The inhumanity of incarceration – an ADHD Pākehā looks at incarceration in a New Zealand context

STRONG CONTENT WARNING: Sexual assault, abuse, substance abuse, incarceration, suicide, mental health stigma, youth issues related to these. If you are ok with these issues scroll down to read – I highly recommend you do.
(If you are reading on phone where spacers don’t work properly – sorry.)


DISCLAIMER: I have been a victim of multiple sexual assaults. I have been abused physically when younger pretty much all the time until age 14, faced discrimination and was bullied in workplaces constantly – in all but one of the ~15 jobs I’ve had in my ~18 years in the workforce. I know what it’s like to want retribution, but that is different to making people accountable. Accountability allows growth and healing to ensure behaviour doesn’t repeat and this cannot be done with retribution.

I also want you to know that in most of these cases – people who commit offences are likely to have been subject to these things themselves. That doesn’t excuse their behaviour. It doesn’t absolve them of the guilt, but it can explain why people hurt people. There are also structural issues that contribute to this behaviour.

I believe incarceration is wrong morally and ethically– incarceration doesn’t work as a tool of justice how you think it does. Shaming people doesn’t help them grow into better people. It isolates them further. Our recidivism rate (the rate at which people reoffend) is over 60%.

I’ll briefly touch on racism and how privilege stopped me from ending up in youth caging facilities and later adult human caging facilities (euphemistically called Prisons – will only refer to it like this if quoting academic stuff – otherwise you don’t get to hide from what this is – they don’t) – there are far better articles about racism in justice systems. I as a Pākehā can’t speak to these issues well enough as someone with no experience of either human caging facilities or racism – I will link them at the end.


My mental health history

A bit about me first. Here’s my mental health in “official” medical records vs when I knew.

In counselling at age 14-17 through Child, Youth and Family Services.

Depression (diagnosed at 25 – present since age ~10)

Tried to get diagnosed for ADHD at age 26 – denied by public healthcare after a six month wait – told that I didn’t have it, it was depression – this is known as medical gaslighting.

Depression + Attention-Deficit/Hyperactivity Disorder – got diagnosed privately at age 29 – the first time I filled my script – the pharmacist asked if I really needed it – this trapped me in the denial stage of grief about getting a diagnosis for the next 6 years until confirmed by another psychiatrist.

DSM-V is updated to add Adult ADHD diagnosis at age 30.

Depression + ADHD + Anxiety disorder (diagnosed at 33, result of stigmatisation and bullying due to ADHD – which I doubted I had or understood at all – thanks to that pharmacist).

Major mental health crisis due to justice sensitivity at age 36 – call 111 – told to meditate 3 times daily by psychiatrist, call 111 again two days later – get tons of drugs, but no talk therapy – actually got an appointment in public healthcare system for talk therapy after a suicide attempt in week 9. 11 weeks after I first called 111 to get help I get to talk to a psychologist.

Finally received full diagnosis and explanation of all comorbid mental health diagnoses.: Depression + Anxiety + ADHD + Autism Spectrum Disorder (diagnosed at 37, present since birth, only knew at 36 because it’s so poorly understood – only through Twitter education did I realise I might have it – took an online test – got diagnosed officially in January 2021)

Things that I know I have through extensive research and testing, that are still undiagnosed: Dysgraphia, Dyscalculia (found out about them at age 35 – explained all my terrible school work I still have, why I struggled with essay exams constantly, and my uniform bad math ability – even though I have a Bachelor of Software Engineering).

Things that I had when growing up undiagnosed for ADHD: A Conduct Disorder (ages 5 to age 20ish – I have theories as to why it dissipated around here, but they are unproven).


“I would have been in human caging facilities, but my skin colour prevented that.”
A single case study in undiagnosed mental health, criminality, and substance abuse

I was a ADHD/ASD child growing up in a world that is not catered to this – that is traumatic alone.

I take responsibility for the things I have done, I have guilt for all the things that I have done – I did bad things. You cannot make me feel shame – I am not a bad person. I doubt few who you consider to be bad people actually are. Especially when given love and support to grow – like I was.


When I was young, I was friends with my bullies, they were the only people who would talk to me – I thought they were being nice to me – even though they rubbed dog faeces in my hair, gave me regular black eyes and beatings, and the one time I fought back I got the permanent nickname “psycho”. All of these were reported to my school, they never did anything about it.

Teachers were also my bullies. I had a conduct disorder of some sort, I think as a result of growing up with undiagnosed ADHD/Autism – I had severe emotional reactions to stuff. I ran away a lot. I disrupted classes. I was a stereotypical “problem” child.

The combination of these two conditions meant I often did a lot of stuff with my bullies. Most notably in memory at school – teasing other kids especially – none of them deserved it (have a permanent playback loop for all the times this happened), getting into fights with my bullies which they initiated all of the time (I’d often get caught for striking back – and be punished here), harassing girls to kiss me when I was in primary (seriously teach kids consent ffs).

Outside of school – I got into a lot of trespassing, property damage, we threw stones at cars. I also inhaled butane in public [I’m lucky to be alive – I got caught doing this and my parents intervened – most people die].

When I was 14 I got caught wagging (being truant from school) and shoplifting clove cigarettes at the same time. The police were called. My 3rd form dean got involved. My punishment? I got banned from 277 mall for two years with a trespass order from police. An extra day at school after school had finished to help clean the school (which finished in two days), I had to tell my Mum personally (which I did), and it went on my official record, but no suspension or expulsion. No youth justice involvement. Diversion but for Pākehā people.

I became a full on loner at school the next year – taking refuge in the library or not attending at all. I also went to the school guidance counsellor of my own volition for sexual assault that happened in childhood and was referred to Child Youth and Family Services for counselling.

This is when I kinda stopped a lot of anti-social behavior, I assessed who my friends were, considering they abandoned me when I got caught shoplifting. With this counselling support, and my keen interest in drama (being successful at school plays as extracurricular activities), I was a lot calmer here and more ok as a person – I still hated school, performed erratically, got bullied by students and staff – but I had good friends in productions with me – and my social isolation dissipated for the first time in my life. I wasn’t using abusing substances and didn’t feel a need to.

The school hate finally got to me, and I decided to drop out for university as I thought that’s what my parents wanted. This was a bad idea. Because I dropped out of school at 17 – I no longer qualified for counselling sessions. The gap between youth and adult support still exists. And it’s like throwing people off a cliff.

At university I never attended. I wasn’t doing subjects I was interested in, I was doing what I thought my family expected of me. When I turned 18 – I hit the clubbing scene. I started abusing a lot of substances. I dropped out of university, I worked fulltime at starbucks.

I nearly died on multiple occasions. I put close friends in ambulances. I breathed for people who had stopped breathing. I dealt to support my own addiction. There were a number of sexual assaults here with men. Then I had a massive major depressive episode after a particularly long binge and my life nearly came to an end. I luckily had family who would take me back, with lots of judgement but they still took me back. I screwed over flatmates to go home, I still regret it.

I managed to get a stable job in IT and I was good at it – I could “perform” in inbound customer service, I thrived because it met a skillset I needed – taking incomplete information from low understanding users and identifying root cause problems – I am great at this.

I still used substances once I turned my life around, but only on weekends – and I still abused them at times. I had found a consistent group of friends, then bad stuff started happening to me and my friends in the group due to drug use. No one died, but I am pretty sure we all carry a lot of trauma from this time period, some of my mental health issues were probably exacerbated by this time period.

I got out of the “scene”. I got clean. I still did things that were ADHD related – car crashes, justice sensitivity issues, blaming others for things that were my fault because I had no idea wtf was going on with me. I wasn’t a great person for a lot of my life. I’ll admit that, I feel guilt for it.

I still struggled with mental health, I have lashed out and put myself into harms way due to justice sensitivity. I nearly died last year – it was the closest I had ever been.

I didn’t really start getting properly mentally healthy until I accepted I have autism. It explained so much behaviour, and from that point onward I have pledged to dedicating myself to making people understand these conditions, the price we pay for having them in a non-accomodating world – and the consequences of having them for those without privilege.

As a result of my diagnoses with love and support – I have improved. That is the case for all people with mental health conditions who I know – given the right support.


There are a number of times during my life I was given leniency by police, times when I could have been put in the youth justice system, but they decided from my recollection that “it wouldn’t be good for a kid like me”. When I was an adult they had lots of probable cause to search me and instead I just got told “maybe just go home now”. I didn’t know what this meant then, or that it was offered only to certain people. I was saved because I am a Pākehā man. I’ve known this is the case since studying criminology at university. I know this because I’ve seen the statistics. I know from internal police reports. I know from every report ever written that I have read on our justice system since 1987.

I know because I’ve seen racism by police first hand, and I’ve had racism explained to me when accessing critical mental health services – a cop bragged about giving mucus jellyfish to one of his regulars when on the way to the hospital – this is an obsessive thought for me now. I think about it and mention it a lot because it was horrific for me to hear when trying to seek help – but imagine what happens to this cops “regular” who might have needed help like I did during his life. (The IPCA is the cops, there’s no way to report this stuff – they are not independent despite what they claim).

The ‘Burden of ADHD’

Early diagnosis is way better to help this, but adult diagnosis is still super important. The consequences of going undiagnosed or untreated can ruin your life and your self-esteem. Even self-diagnosing and seeing people talk about it helps. Look up the ASRS ADHD test, the MURS ADHD test, and the MEWS ADHD test – if you score highly on these – you should seek an official diagnosis – and you can say you have ADHD self-diagnosed (because of barriers I describe in previous articles here) if these problems occur frequently in daily life.

Below is the pull quote from the consensus statement on treatment and diagnosis of Adult ADHD. Read through that statement. Look back at my mental health history and problems I had. Think about why I care about this so much now.

The impairments associated with ADHD across the lifespan are impressive. ADHD is associated with learning difficulties, school dropout, underachievement at work, frequent job changes, chronic fatigue, financial problems, gambling and internet use, home and traffic accidents leading to increased mortality rates, relationship difficulties and intimate partner violence, early onset of addiction, teenage pregnancies and sexual transmitted diseases, a two-fold increased smoking rate, an increased number of suicide attempts and self-harm in adolescents, and increased criminality. Moreover, physical disorders and ailments may become chronic due to forgetfulness, health problems induced by a negative lifestyle, poor eating and sleeping habits, and lack of health care follow-up. ADHD has further been associated with auto-immune diseases, obesity, and physical multi-morbidity. In one large study, individuals with more than 4 diseases had over more than 3-fold higher odds of possible ADHD. The risk of diabetes, hypertension, cardiovascular disease and cancer, that are related to obesity, may be increased as well. An additional burden on family life may be the presence of one or more children with ADHD, which happens frequently due to the high familial risks of the disorder.

Clinicians should also be aware that high functioning adults with ADHD may not present with a typical pattern of functional impairments in their daily life. Adaptive or compensatory skills can develop that mask the more overt behavioral problems related to ADHD. Some may find work that is well suited to their symptom profile. Furthermore, in ADHD neurocognitive performance and inattentive symptoms are sensitive to the salience of task activities. Such people with ADHD may excel in certain aspects of their lives, but still be impaired in others, such as more routine and mundane tasks such as paying bills, looking after the house, or developing stable social relationships. Problems can include subjective distress from symptoms such as mental and physical restlessness, sleep problems, and emotional instability; and the use of drugs such as cannabis or alcohol to reduce these symptoms.

Updated European Consensus Statement on diagnosis and treatment of adult ADHD

A brief summary of our justice system(s) in New Zealand

Here is a summary. We have three justice systems (I’ll provide resources for you to read more on this topic if you are interested):

  • one for rich white people (who almost never get prosecuted, even less go to human caging facilities)
  • one for very few minorities who are rich and poor white people (who usually get prosecuted, who sometimes go to human caging facilities)
  • one for Māori and Pasifika people and all other not mentioned ethnic minorities (where the default is prosecution followed by going to human caging facilities).

Mental health prevalence in NZ Adult Human Caging Facilities (Data from 2016):

In this study, prisoners were found to have a high prevalence of both lifetime and 12-month diagnosis of mental health and substance use disorders. This included nearly all (91%) prisoners having a lifetime diagnosis of a mental health or substance use disorder and 42% having a lifetime prevalence of a comorbid mental health and substance use disorder. Over half (62%) of prisoners had a 12-month diagnosis of a mental health or substance use disorder and one in five (20%) had a 12-month diagnosis of comorbidity for both disorders. With this high prevalence of comorbidity, it is important for treatment provided in prison to address both mental health and substance abuse treatment needs concurrently.

Comorbid substance use disorders and mental health disorders
among New Zealand prisoners

91%!

91%…

We’ve failed as a society. I mean we are caging them because they often have wound up in human caging facilities due to undiagnosed or diagnosed mental health conditions that are untreated.

But wait, how many of the 91% had substance abuse problems?

Lets take a look:

The majority of (87%) prisoners had a lifetime diagnosis of a substance use disorder, compared to 12% in the general population.

COMORBID SUBSTANCE USE DISORDERS AND MENTAL HEALTH DISORDERS
AMONG NEW ZEALAND PRISONERS

87%

87%…

So a large number here will have been committing crimes related to substance abuse. The non-violent offenders shouldn’t be here. They just shouldn’t at all as a start. It’s inhumane to treat people like this, no one gets better incarcerated.

At least we are treating these people in human caging facilities if they need help right? They probably get help while incarcerated.

Nearly half (47%) of prisoners with a 12-month diagnosis of a mental health or substance use disorder had mental health treatment in the preceding year, suggesting high rates of unmet treatment needs. The lowest rate of treatment received in the past year was for substance use disorders (42%), compared to 59% for prisoners with a mood disorder. Men were also significantly less likely to have sought any mental health treatment compared to women.

COMORBID SUBSTANCE USE DISORDERS AND MENTAL HEALTH DISORDERS
AMONG NEW ZEALAND PRISONERS

53% of people currently in human caging facilities receive no mental health support, despite having mental health conditions. This is not justice. This is an abomination.

End Human Caging Facilities


START FIXING ROOT CAUSE ISSUES WITH MENTAL HEALTH SUPPORT.

If you are mad about this, and you absolutely should be furious. Please consider reading up on alternative justice – start reading into abolition.

People Against Prisons Aotearoa (PAPA) is a prison abolitionist organisation working for a fairer, safer, and more just Aotearoa. I am a member – support their cause.

Conclusion

If you have retribution as your goal, we will never agree, and from my extensive research – society will never get better.

I wanted to make this more specifically about ADHD – which 25.5% of prisoners are estimated to be in most prison populations according to the ADHD study I link in the references, with a higher incidence in youth human caging facilities, but it’s not fair to other people suffering if I only show those who have this particular problem.

Human caging facilities are awful. They are racist, they are degrading and dehumanising, people in there often need alternative help. People get better with love and support. No one ever gets better (at best they might get “ok”) in a carceral context. Become an abolitionist.

ANTI-RACISM IS ABOLITION.

Essential Reading on Prison Abolition – taken directly from PAPA’s FAQ.

Further Reading and References:

My Practice of Stoicism (Redux 2021)

image source

This is a repost with some amendments made. I’d like to say that I didn’t lose my way on the Stoic path, and I’ve recently been questioning whether someone with ADHD and Autism could actually develop and progress on the Stoic path. I lost my way pretty heavily when COVID-19 started happening and seasonal depression set in. I underwent a significant mental health crisis.


Luckily for me, someone with ADHD had already asked this of one of the greatest living Stoic philosophers Massimo Pigliucci and his response is here. The answer is yes, and perhaps more interestingly, there are many lessons of the Stoic teachers who remind us to be compassionate to oneself, and remember that the goal is unattainable for us to achieve perfect wisdom.

I have started to resume my daily practices and meditations (here this doesn’t mean meditation in the same way it’s mostly practiced – it means listening to someone give a meditation on Stoicism).


I try to live a life guided by Stoic philosophy. I practice being a Stoic by writing daily and thinking on important readings made by a whole host of Stoic philosophers; aiming to live the most virtuous life I can. I wanted to go into a bit of detail about what being a Stoic person means, and how I incorporate Stoicism into my life.


What exactly is Stoicism ?

So you will have probably come across the term stoic, and have a picture in your mind of a stoic (lowercase ‘s’) person based on the dictionary’s definition:

stoic –

a) a person who can endure pain or hardship without showing their feelings or complaining.

https://www.lexico.com/en/definition/stoic

Generally in popular culture today Stoicism is seen as being unemotional, or someone who doesn’t complain a lot – even when times are at their worst.

While this disposition might be an outcome of Stoic practices, it’s not the end goal of a Stoic. This ability to restrain emotion comes from the way they organise themselves, their thoughts, and practice living a virtuous life. It’s not that they don’t have emotions, but that they do not let them control them.

The main goal of all philosophers during the times of Stoicism rise was to achieve Eudaimonia (roughly translating to “eu” meaning good, “daimon” meaning spirit). Basically the goal is to live the best possible life – however the many schools of philosophy at the time had quite varied interpretations of how that could be achieved. As a Stoic I am trying to live ‘the good life’.


The main tenets of stoic living

Live in agreement with nature

The core goal in life is to live in agreement with nature… which sounds a little vague and cryptic – ( so like does that mean we have to become bush people? Forgo clothing? ). To understand what Stoics mean by this we will turn to the teachings of Epictetus:

“For what is Man? A rational animal, subject to death. At once we ask, from what does the rational element distinguish us? From wild beasts. And from what else? From sheep and the like. Look to it then that you do nothing like a wild beast, else you destroy the Man in you and fail to fulfil his promise. See that you do not act like a sheep, or else again the Man in you perishes.

You ask how we act like sheep?

When we consult the belly, or our passions, when our actions are random or dirty or inconsiderate, are we not falling away to the state of sheep? What do we destroy? The faculty of reason. When our actions are combative, mischievous, angry, and rude, do we not fall away and become wild beasts?”

The Discourses of Epictetus – Chapter IX

The key concept here is that human beings are rational animals. The thing that makes us unique on Earth is our ability to reason – this is something that allows us great faculties in life such as social relationships and mental abilities – for example reading this blog!

We shouldn’t behave like beasts because we have the ability not to, we can make sense of the world around us in ways that beasts will never understand. So for a human to live in agreement with nature they have to embrace their rationality, for if we do not – then we are beasts. So to act in accordance with nature as a human – we must use our naturally given advantage and act like a human by using reason, the thing that makes us human. The goal is to apply reason in everyday life.

Living with ADHD and Autism can make this not always easy, but the goal is where capable to apply this practice.


Live by Virtue

This is the part of Stoicism that spoke to me on a hugely personal level. I have realised that there’s not much I have control over in the world around me, but I want to make sure that I live a life where each day I try to work to better myself, but more importantly the lives of others.

To stoics achieving virtue is the highest good. So what do they mean by virtue? Well, it’s pretty simple actually – if we live in accordance with our nature with us using reason to attain virtue – then we would be living the good life.

So what are virtuous traits – they had this part covered there are four cardinal virtues of according to Stoicism:

  • Wisdom
  • Courage
  • Temperance
  • Justice

Wisdom

This could perhaps be best summed up as the ability to see things as they are, rather than looking for what we want them to be. Stoics were focused specifically on the ability to know what is good, bad, and indifferent. This was summed up well below:

“The chief task in life is simply this: to identify and separate matters so that I can say clearly to myself which are externals not under my control, and which have to do with the choices I actually control. Where then do I look for good and evil? Not to uncontrollable externals, but within myself to the choices that are my own” 

Epictetus

What Epictetus is touching on here is that in order to be wise – we have to have a deep understanding of our biases, values, and beliefs. This passage also points out an important part of Stoicism – the ability to know which things you can and cannot control.

For the things we do control we must take full responsibility – so our beliefs, values, responses to people, reactions to people – these are the things that we have the power to influence and we should use whatever tools we can to improve these things as an everyday practice.

This is sometimes hard with neurological barriers and being someone with ADHD/Autism makes me sometimes take on unwanted or unneeded feelings. Of all the Stoic virtues to master, this is the hardest for me.

Courage

Courage was viewed as opposing cowardice – it doesn’t mean that you are immune to fear, anxiety, and desire, but rather that you act in spite of these things.

Epictetus stated that we shouldn’t feel shame if we react physiologically, with fear, or anxiety as a first reaction. This is often an involuntary and visceral reaction – ie. Jumping to the sound of thunder. What makes the Stoic reaction different to this is that we should train ourselves to reject the initial feeling, and let it go, so that we may bring ourselves back to reason.

Epictetus said:

“And they say that there is this difference between the mind of a foolish man and that of a wise man, that the foolish man thinks that such ‘visions’ are in fact as dreadful and terrifying as they appear at the original impact of them on his mind, and by his assent he approves of such ideas as if they were rightly to be feared, and ‘confirms’ them …. But the wise man, after being affected for a short time and slightly in his colour and expression, ‘does not assent,’ but retains the steadfastness and strength of the opinion which he has always had about visions of this kind, namely that they are in no wise to be feared but excite terror by a false appearance and vain alarms”

Aulus Gellius – Attic Nights

Temperance (Moderation)

The best way to think of Temperance is to think of the modern day usage in the word moderation. It deals with our ability to self-regulate, and to choose long term over short term satisfaction.

Seneca wrote:

“Until we have begun to go without them, we fail to realise how unnecessary many things are. We’ve been using them not because we needed them but because we had them.”   

Seneca – Letters from a Stoic

Indeed this is something I have recently been trying to put into practice with social media. Social media is addictive, and in my view counterproductive in most cases.

Definitely as the platforms are generally curated by algorithms they are used to drive engagement – so outrage sells – I use these platforms still, until I believe that there’s nothing of value to view (which is pretty much most of it – if uncurated).

In most other areas of my life, I have become pretty indifferent to comforts, and use the Stoic practice of withholding certain comforts (taking cold showers, sleeping outside, wearing one layer less of clothing, forgoing pain medication on bad pain days) to remind myself that these are luxuries that could be taken from me at any time.

Justice

This is the most important of the virtues for me personally, although all are important. Indeed Cicero wrote:

“Justice is the crowning glory of the virtues.” 

This virtue specifically deals with how a Stoic treats others in everyday life, and how we contribute to society as a whole. It encompasses all the moral decisions we make in regards to our networks of influence and communities.

The principles that Stoics regard to be important in these contexts are kindness, understanding, fairness, and generosity. We must provide support to those who need it, and not take from the community without giving back.

This is probably what drew me to Stoicism when I first started reading up about it. I have always tried to regard myself as an ethical person. I have always cared about being altruistic, and for acting in the common good. I have been pretty average at doing this in the past – but I have specific examples of times in my life where the most joy I have felt was through assisting and helping others.

How I practice being a Stoic?

Everyday I listen to meditations – there’s a great podcast series by Massimo Pigliucci available on Spotify – which is a small roughly two minute meditation where an extract of the main Stoic philosophers is read and then analysed by Massimo, as well as giving context and modern examples of Stoic thinking put into practice. These meditations are a great way for me to start my day.

I have tried (and failed often, but always kept retrying) to create anchors for myself in the world in order to remember Stoic teachings, this has allowed me to try and rewire the part of my brain that instinctively reacts and to instead breathe, regather my thoughts, discard the first interaction and then focus on bringing back reason. Again, I am not perfect at this, and the goal is not perfection but to try and make sure that we live as close to the virtuous life as possible.

I carry a copy of Marcus Aurelius’ Meditations on me at all times.

My career – I have specifically chosen a line of work that will lead me to maximising good for society as a whole. My further education that I am undertaking is in line with Stoic practices and allows me to fulfil my life of servitude toward the common good. I have no desire for material wealth, only to somehow deal with the immense challenges that we face as a society in the coming decade – specifically growing inequality, the climate crisis, racial injustice, and continuing denial of basic human rights. These are the challenges I want to deal with in life.

Final Thoughts

There are some modern schools of Stoic thought such as $toicism (a warped capitalist version) and Broicism (a distinctly anti-feminist branch of Stoicism). I reject both of these applications of the teachings as a wilful misunderstanding of the teaching of Stoic philosophy.

Stoicism should not be thought of as a rigid and fixed philosophy, indeed most modern Stoics incorporate good parts of any philosophy, so long as it allows them to better achieve virtue.

This is a very basic look at some of the core teachings of Stoicism – but there are a plethora of amazing resources for further reading. I’d recommend specifically:

  • ‘How to Think Like a Roman Emperor’ – by Donald J. Robertson. This book written by a practising psychologist uses Marcus Aurelius’ life as a teaching tool for incorporating Stoic practice into every day life. The amazing thing he discovers is that a lot of modern psychological practices such as Cognitive Behavioural Therapy techniques were already used in practice almost two millennia ago by Stoics.
  • Daily Stoic – an excellent website with regular updates and insights on living the life of a Stoic.
  • ‘Live Like A Stoic : 52 Exercises for Cultivating a Good Life’ – Massimo Pigliucci and Gregory Lopez. A set of practical weekly exercises aimed at guiding you to living a more stoic life.
  • Stoic Meditations – The podcast series by Massimo Pigliucci.

I might write more about some of the other key teachings in the future, but I thought I would start here.

This is in essence the goal of my life.

A mixed-methods study into New Zealand adults’ experiences of Attention Deficit/Hyperactivity Disorder (ADHD) diagnosis and treatment in New Zealand.

McCarthy, R. 

Abstract

Background

Attention Deficit/Hyperactivity Disorder (ADHD) is a common psychiatric condition that presents in childhood and which persists into adulthood and old age. ADHD appears to be underdiagnosed within New Zealand. A large number of adults who believe they have ADHD through self-diagnosis are unable to access a formal diagnosis due to the barriers of ADHD care in New Zealand. The experiences of these people, with and without a formal diagnosis in the New Zealand healthcare system, have not been explored in research to date.

Objective

To collect perspectives, information about day-to-day living conditions, barriers to access ADHD care and support, and to explore the unmet needs of those living with adult ADHD within New Zealand. To see if these needs match international reports on ADHD. 

Design and Participants

In this mixed methods survey – a self-selected sample of adults (n = 186) who have either have a formal diagnosis of ADHD (n = 106), or have self-diagnosed as having ADHD (n = 80), were recruited from New Zealand via direct contact over Twitter or from within the ADHD New Zealand private Facebook ADHD NZ Adult Support Page.

Results

Adult ADHD persons with undiagnosed or diagnosed ADHD report a lack of support, have more negative than positive outcomes as a result of ADHD, and are subject to societal stigmatisation, gaslighting, and discrimination. Barriers to healthcare are preventing those with the condition from getting a diagnosis, with a large portion of the undiagnosed systemically prevented from gaining treatment.

Conclusion

Adult ADHD services in New Zealand must be improved as a priority in order to prevent further harm from occurring. Wide scale education initiatives are needed for General Practitioner doctors, teachers, and the general public. Issues of stigmatisation, costs of treatment, availability of treatment, and current best practices for ADHD people must be addressed.


Introduction

Attention-deficit/hyperactivity disorder (ADHD) is a common psychiatric disorder of children that persists into adulthood and old age with recent prevalence estimates being around 5% of the population across European countries (Kooij et al., 2019). In studies done in other Western nations, the rates of diagnosis indicate that large numbers of adults are going undiagnosed (Kooij et al., 2019). The current definition of ADHD in the Diagnostic and Statistical Manual of psychiatric disorders (DSM-5) was updated in 2013 after nearly two decades of research have found evidence of the persistence of ADHD symptoms in adults (American Psychological Association [APA] , n.d.). The inclusion of adults and the criterion on which they are assessed has been met with considerable debate. Our knowledge of ADHD presentation is evolving understanding as research improves (Matte et al., 2012).

Research in recent years has shown significant barriers to access to ADHD care internationally. In a mixed method systematic review of ADHD in primary care, a number of reasons contributed to lack of formal diagnosis of this condition; these were summarised into thematic categories: need for education; misconceptions and stigmas; constraints with recognition; management and treatment; and a multidisciplinary approach (French et al., 2019). 

The burden of living with ADHD undiagnosed or untreated can have effects in almost every facet of life including academic achievement, interpersonal relationships, substance or alcohol abuse, financial and employment difficulties, criminality, increased comorbidity of other mental illnesses, and even early fatalities (Hamed et al., 2015).    

The significant barriers to diagnosis have left some people who believe that they have ADHD to self-diagnose. Self-reported ADHD symptom tests such as the Adult ADHD Self-Report Scale (ASRS) and the Wender Utah Rating Scale (WURS) have demonstrated high diagnostic accuracy in Western nations (Brevik et al., 2020). As there are so many people living with ADHD undiagnosed (Kooij et al., 2019), the decision was made in the present study to allow those who had self-diagnosed to participate as they may highlight or verify issues with ADHD care in the New Zealand healthcare system.

The purpose of this research is a) to ascertain whether international trends in Western nations are applicable in New Zealand b) expose barriers to accessing ADHD care c) provide information about needs and concerns in this understudied population to the public sector on this issue. 

Method

This research is part of a  mixed-method confirm and discover approach (Schoonenboom and Johnson, 2017)  to gain an understanding of how ADHD care is being diagnosed or treated. Research overseas highlighted areas that might be of specific interest when looking into ADHD care within New Zealand. Specifically, French et al. (2019), showed that there were some fundamental issues present in most health systems in regard to ADHD treatment. 

A qualitative approach was needed in some cases to discern reasons for self-diagnosis and reasons for not seeking or being prevented from seeking an official diagnosis. Specific research avenues divided the diagnosed and undiagnosed persons with ADHD for context specific understanding of ADHD diagnosis and treatment. The quantitative data collected was a number of multichoice questions, as well as Likert scale tests to ascertain beliefs about the current healthcare system as well as their view of ADHD, and knowledge of ADHD in wider society. 

Quantitative measures were used to gain general patterns of experiences of ADHD adults within the healthcare system, their own ADHD management, as well as the knowledge of new ADHD treatment options. The questions around quantitative approaches were based on previous research conducted overseas into similar issues within ADHD healthcare systems.  It was also important to capture respondents’ experiences within the healthcare system in their own words. 

All qualitative data would be then thematically analysed in order to find common themes (Braun and Clarke, 2006).

Data was kept anonymously, in line with New Zealand privacy laws, and research abides by all modern university ethical standards. However, this research was conducted outside of any institutional learning establishment or special interest organisation.

The survey ran online from January 23rd, 2021 at 10:06AM to January 31st, 2021 at 11:59PM.

Due to the nature of being an online advertised survey, response rate is not able to be measured. Due to the lack of available data on ADHD population through official statistics sources in New Zealand due to privacy concerns – there is no accurate way to calculate sample size. The only available research on this is a single paper that has significant limitations as it only investigates the medication dispensation rates of ADHD medications, and does not provide a full picture(Dsouz 

The need for private collection of data means that things like age, race, gender, and socioeconomic status were not considered. As an online survey was used, those without internet access would have been missed in any data collection. This potentially limits understanding of specific issues. However the aim of this research was to provide a general portrait of ADHD care in the New Zealand health system.

I work as an independent ADHD and Autism Spectrum Disorder (ASD) advocate and researcher. In order to get participants I recruited members through a public Twitter post as shown in Figure 1. In order to screen for New Zealand participants only, I required that they contact me directly through the Direct Messaging service provided by Twitter, or I would contact them through this same service. After quickly verifying that they were from New Zealand, I sent a link to the survey. 

A second source of participants was the official ADHD New Zealand organisation – ADHD NZ Adult Support Page on Facebook. The invitation was posted a day later than Twitter as it was awaiting a moderator’s approval, as seen in Figure 2. A direct link to the survey was made available as the ADHD NZ organization moderates and limits participation to those within New Zealand with ADHD. Prompts were given at regular intervals on both Twitter and Facebook to increase participation. 

The online survey was divided into seven sections with a specific topic focus, or requirement to aid in answering further sections. 

The first section of the survey contained an introductory statement including background and rationale, data privacy considerations, and specific opt-in data collection requirements inline with all legal considerations (see Appendix 1). Users were able to identify their unique data by entering in their initials and a random number between 1 and 100 in case they no longer wished to participate or they could use ‘Not Applicable’ (NA or N/A) shorthand to opt out of any specific private data being collected. A simple math problem was used to verify that the entries were human participants.

The second section asked users a simple yes or no question whether to ascertain if the survey participant had received an official formal diagnosis. 

The third section was only available to those who had answered no to the above question, this section was labeled “Adults with suspected ADHD without an official formal diagnosis”. It contained a yes/no question as to whether the participants had discussed the possibility of ADHD with their primary healthcare physicians. 

Below, an optional question was added which allowed those who had said “No” to the previous question to provide a short explanation as to why they hadn’t, as the intention was to capture qualitative reasons for not approaching their primary care physician (PCP) or general practitioner (GP) doctor. The outcome of this would determine if the predicted barriers to adult diagnosis 

The final question in this section was a multi answer question informed by other research in this field on what prevents people from receiving an official diagnosis. A free text field was available for common causes not listed. 

The fourth section was specifically for those with an official formal diagnosis of ADHD – the purpose of this section of questions was to ascertain whether they were diagnosed as an adult or child/youth (under 18 years) using a single-choice question. Whether that diagnosis was made in public or private healthcare using a single choice question. The Phi-coefficent test would be used here to test a hypothesis that those who had received public healthcare for diagnosis were significantly more likely to have done so as a youth or child than an adult. 

A multiple choice question was asked to see whether they were offered any counselling or mental health care management support or just had been given medication. There was also a free form option for “Other” as seen in Figure 3.  

The final single answer question in this section was in regard to whether their ADHD is currently being managed with a mental health profession other than the prescribed ADHD medications. 

The fifth section was a series of 10-point Likert scale tests using a value of 1 to represent strongly disagree and 10 to represent strongly agree. This was to get an overall picture of how people believe their ADHD is being managed, how well they think people understand their condition, and whether they are impacted negatively or positively by their ADHD, as well as general public views and disclosure of ADHD to new people. Standard statistical measure of mean used to describe trends based on responses. 

The sixth section of this report asked specifically about ADHD Coaching services, and was deemed entirely optional. The rationale for including this is that I had only personally just learned about it as an ADHD adult.I provided information on the service, whether the participants thought it might be helpful, and then asked them to give a qualitative answer on what specific aspects of their day to day living they would like help managing.

The seventh and final section was another optional section. The two qualitative questions that were available here were “Please provide what actions or undertakings you made or have made to get diagnosed” and “Please provide additional comments you wish to make”. As this was specifically on healthcare I wanted to allow the option for people to submit any further concerns they might have had that I had not raised within the scope of my survey. 

Results

Of the 197 survey entries received, 11 were discounted due to a bug with Safari browser that would resubmit results whenever users opened the application. This data was easily found and removed, leaving 186 respondents.

Those with ADHD who had received a formal diagnosis made up 57% (106 participants) with those who had self-diagnosed making up the remaining 43% (80 participants). 

Of those who had received no formal diagnosis 55% (44 participants) had tried to seek diagnosis through their general practitioner doctor, with the remaining 45% (36 participants) stating that they had not. 

All participants without formal diagnosis gave reasons for not talking to their GP in the freeform field. The reasons varied with some common themes emerging (Braun and Clarke, 2006): a lack of confidence in their GP or mental health services to correctly diagnose or be open to diagnosis was most common. Other common themes involved a fear of not being taken seriously because participants did not appear superficially to be struggling or because other diagnoses or personal characteristics overshadow possible ADHD symptoms, as shown in the examples below. :

“I’ve been in the mental health system since I was 9 so I had assumed if I have ADHD they would have noticed but I’ve recently realized alot was overlooked back then”

“I’m not sure she would entertain the idea of testing and treatment, or she would assume I don’t have it because I present very well and successful to people who don’t know me or know me well.“

“Because I don’t feel he would believe me. I’m very personable &  attentive when in a room with one person. Interpersonal skills are good and so people dont believe I can be so scatterbrained etc when talking one on one. If you sat on my shoulder and went through the day with me you’d see differently.”

“Because I have before and they have brushed it off as “it wouldn’t change anything”

“Doctors here don’t even bat an eyelid when I tell them I’m struggling with my mental health.”

“I avoid going to the GP at all costs. (They’re racist and too busy to do a safe job anyway)”

“My doctor has explicitly explained that he thinks my symptoms relating to anything are anxiety based (even though anxiety medication has not done much for me), but I was planning on asking a different GP at my doctors office this week.”

“I’m anxious to bring it up.”

“Afraid of being judged / not taken seriously. Baggage from previous struggle to get physical health issues taken seriously.”

“Previously when i’ve seen a dr it’s been about depression and anxiety, so any difficulty with focus etc has tied into that”

“Lack of confidence with getting an assessment. This is related to my age, and lack of confidence in medical services understanding of Adult ADHD and interplay with ASD.”

“My GP has disappointed me in the past and don’t think she would be much help with this, and I haven’t got around to finding another GP.”

“prefer not to go to any doctor, if it’s not neccessary”

Another common theme in the data was the recent discovery that they are ADHD. 

“I’ve discussed it briefly with a student health therapist. ADHD (inattentive) only hit my radar as a possible neurodivergent dx for me in the last 6 months while looking for how to best support my quirky kids.”

“Only just became aware that certain traits that relate to me can be symptoms of ADHD”

“Has been a recent realization that I have ADHD”

“I had no clue about ADHD until recently”

“Only just realised it may be a possibility via internet”

“i always thought my behaviour was normal”

Finally, a perceived lack of availability of public mental health services and the cost of ADHD support or care are perceived barriers to care.

“Due to unavailability of services…”

“I don’t think I’d be eligible for referral in the public system”

“I’ve read that it costs loads to get a formal diagnosis.”

“I’m really worried about how much it could cost me as I’m still in uni and there is also no specialist in the town I’m currently at.”

The rest of the data was varied in concerns ranging from other health concerns that took priority, immigration status, already receiving alternative therapy or under investigation with other medical staff, COVID-19 delays for seeing the doctor, or a lack of time to seek diagnosis


Answers to the multi answer question on what is preventing them from seeking a formal diagnosis had the following results – cost of private diagnosis (61.3%), affordability of ADHD specialists (56.2%), I am scared that I do not have ADHD (30%), doctor unwilling to consider a diagnosis and will not refer me to a private service (26.2%), waiting for diagnosis through public healthcare (20%). 

There was also the ability to add a reason not specified, the most common theme among the answers was a lack of trust in the medical system (17.5%), with examples below:

“Psychiatrist said going down the diagnosis route would complicate dealing with my anxiety issues.”

“Bad experiences with health system”

“My previous GP told me that my experiences were because I had a high self expectation, and that I didn’t have adhd.”

“Afraid to approach GP about getting a referral to specialist”

“Scared that doctor is going to think I don’t have it”

“I saw one psych and she blamed other mental health problems [redacted for privacy] for any or all possible symptoms and refused to continue assessment”

“Traumatic previous experience with a psychiatrist [redacted for privacy] has made me reluctant to engage with any psychiatrists since”

“Don’t see the need to finish the paperwork until better services are available.”

“There is no way of getting diagnosis through our system for free unless you are a child”


The stigma associated with having ADHD was listed (6.25%), with examples below:

“My husband is also concerned about me getting labelled and medicated.”

“Judgement from family who would help me in the diagnostic process”

“residual reluctance from social stigma around ADHD kept me from seeking help for ~20 years despite suspicions since i was ~10”

“Negative response from future employers”

Other less common themes are listed in the table below.

Reasons for not seeking diagnosisPercentage of respondents
Procrastination5%
ADHD is managed already5%
Newly discovered they had ADHD2.5%
Other health priorities1.3%
Higher insurance premiums1.3%
Table 1 – Reasons for not seeking diagnosis

In the next section people who had a formal diagnosis overwhelmingly were diagnosed as an Adult 84.9% (90 participants) as compared to those who had been diagnosed as a child 15.1% (16 participants). 

Of those with an official diagnosis the vast majority had been diagnosed privately 75.5% (80 participants) compared to those who had received a public diagnosis 24.5% (26 participants).

Based on the results of the survey, people diagnosed by public mental healthcare services are more likely to have been diagnosed as a child than as an adult Φ = 0.31, p < .05. This confirmed the hypothesis showing a moderate positive relationship. 

The single choice answer section on services that had been offered after diagnosis showed that participants were overwhelmingly just given medication 71.6% (76 participants), while paid services  were offered to some 8.5% (9 participants), or free services 6.6% (7 participants). The answers in the other option had those offered no medical or therapeutic support 6.6% (7 participants), the remaining 6.6% (7 participants) had been offered a mix of private and public services, had been too young to remember, were actively receiving support via another source, or been provided with self management techniques. 


Of those currently with a formal diagnosis, the majority were not currently managing their ADHD with health professionals aside from taking ADHD medication 79.2% (84 participants) compared to those who were 20.8% (22 participants).

The next section looked into participant views on issues with ADHD using a 10-point Likert scale with a rating of 1 meaning strongly disagree with the statement and a rating of 10 meaning strongly agree. All 186 participants completed this section.

StatementMeanAgreement or Disagreement
I have the support I need to manage my condition4.09Slight disagreement
My ADHD is being managed well4.58Very slight disagreement
I have been provided enough publicly funded options to treat my ADHD2.16Moderate disagreement
I believe that my primary health care physician (Your Doctor or General Practitioner) has a good understanding of the challenges and needs of my ADHD3.91Disagreement
ADHD often negatively affects my day to day life8.03Moderate agreement
ADHD often positively affects my day to day life4.98No agreement or disagreement
I believe I would benefit from more support8.85Strong agreement
Getting an ADHD diagnosis is easy in New Zealand2.50Moderate disagreement
I never have faced ableism (being discriminated against due to your ADHD) in the healthcare system or had my medication questioned by a healthcare professional in New Zealand5.02No agreement or disagreement
I feel safe disclosing my ADHD status to new people4.35Slight disagreement
I believe that the general public is well informed about how ADHD presents and the difficulties of living with the condition1.93Strong disagreement
Table 2. Agreements or Disagreements with targeted statements

The next section focused on ADHD Coaching a new line of assistance that is available for ADHD care. When asked if they had heard of this service before the majority had not heard of it before 67.7% (126 participants) compared to those who had heard of it 32.3% (60 participants).

When answering if they would use the ADHD coaching services to manage their ADHD using a multi answer question  – the majority would indicated yes 85.5% (159) they would use it based on the following conditions –  if the service was publicly available 68.3% (127 participants), if the service was reasonably priced 58.1% (108 participants), or if the service was offered pro bono 21% (39 participants). 

Of those that answered that they would not, the most common objection was that they would not have the time 8.6% (16 participants), while 1.6% (3 participants) believed there was no need for them personally to access  this service. 

An ‘other’ option was given, and the most common answer was that they were unsure of the service 2.6% (5 people) The other single participant (1.3%) answers given were that they were in coaching overseas, that they wouldn’t want to take up space if they didn’t get a diagnosis over someone who did, that the Employee Assistance Programme in New Zealand should cover things like this, that it was not applicable to them due to their current training, or that they are uncomfortable with ‘managing their ADHD’ because a lot of their issues come from unreasonable normative expectations.

Common themes were also identified in answers to the freeform optional question which 158 participants answered about what help they would like in their day-to-day lives. I did not include 8 entries who were unsure or answering outside the scope of the question. The most common response related to executive function issues 55.1% (87 participants) examples below:

“executive function stuff”

“Just being able to function on a day to day basis with things like cooking and cleaning for myself”

“follow through”

“Concentration”

“Improving ability to ignore distractions and stay engaged in boring tasks which are required”

The next common theme was planning, organising, and time management – the distinction with the last category is that this is about designing schedules, rather than executing them as above, with 35.4% (65 participants), examples below:

“Time management”

“planning tasks”

“Planning not just for myself but for other staff too.”

“Generalised hints for organisation”

“Organising the things that I need to do daily especially uni related things”

“scheduling free time, hobbies and work time separately, daily routine”

The next common theme, with rejection sensitivity a common element, was emotional regulation with 17.7% (28 participants): 

“anger management”

“emotional regulation”

“Stress, emotion regulation”

“relaxing when my brain is wired”

“help with minimising self-destructive habits”

“Emotions. I feel like adhd makes emotional regulation hard and brings up stuff that isn’t quite anxiety or depression and that normal channels aren’t always equipped to help you.”

The next common theme was issues with low self worth or self esteem, confidence, and negative thinking 13.3% (22 participants):

“not being able to reach my own high standards.”

“self esteem”

“Resilience”

“setting realistic expectations of myself”

“negative perfectionism”

“negative thinking cycle”

Less common themes have been summarised in the table below:

Day-to-day life issuesPercentage of respondents
Managing others demands7.6%
Anxiety or intrusive thoughts7.6%
Education on how ADHD affects their lives7%
Losing common items6.3%
Sleeping5.7%
Everything5.1%
Socialising and Relationships3.8%
Cleaning tasks1.9%
Maintaining eating habits1.3%
Advocacy1.3%
Table 3. Day-to-day life issues that need management

The next section was a free form answer section 134 participants gave an answer on what actions they took or had taken to get diagnosed. A very common result is being failed by the public mental health system or having to wait too long 22.4%(30 participants), examples below:

“I saw my GP who advised going through the public health system for dx because of outdated measures and slow. Went on a waitlist for a partially funded service but then moved out of the catchment zone so ended up going to a private psychiatrist”

“Contacted private psychiatrist to make appointment, had appointment, paid for it, got diagnosis, paid for medication reviews.Didn’t bother with public system as heard there were huge waiting lists and it was not dealt with by my DHB. Had experience with the time taken to get my children diagnosed in public system, so knew the system was woefully under-resourced and I was unlikely to be helped.”

“In 2016 it was my final semester of university and I was on the verge of failing all my papers, so I finally went to my GP and suggested I thought there was something wrong. I suspected it was ADHD but was too nervous to propose it myself, so I said I thought I was depressed. But after I explained my experiences the doctor immediately suggested it sounded like ADHD could be my main problem. We went through the checklists and she asked a bunch of questions, and ended up saying I should try and get a proper diagnosis.

After this I initially tried to go through the public system, although my GP warned me I probably wouldn’t get an appointment. I had a ten minute phone call with a nurse, mostly in tears, as she asked me about my social life and whether I had a part time job and could pass my courses, and eventually concluded that she didn’t think it was ADHD and I wasn’t that badly off anyway so should just try taking antidepressants for the time being and see what happened.

In the end a relative (I didn’t feel comfortable talking to my parents about mental health) paid for and drove me to an appointment with a private psychiatrist, where I got a diagnosis and a prescription for medication.”

“I researched a lot online and compared my experience to what I saw depicted on Twitter, as a lot of artists and other creatives with ADHD congregate there and share their experiences (particularly @ADHD_Alien). Once I was sure that I had adult ADHD and that my insurance could cover it, I made an appointment with a psychiatrist specialising in ADHD and made sure I was able to get the diagnosis in that session alone because I wouldn’t have been able to afford anything else.”

“Requested referral from WLG Community Health, Maanaki House AKL, and GP. All went nowhere/declined. Currently pending private appointment”

“Talked to a psychiatrist at community mental health, had observational scale tests done by family/friends, trying to save money to see a private specialist”

“Three different GPS between 2018 and 2020 but none with a long term history of me and only one of them had an understanding of ADHD in adults but I dismissed it back in 2018. The next told me I would’ve been an underachieving hyperactive child. The next told me it could be sleep apnea (spoiler: it was not). I’ve procrastinated for over a year now but finally going to see someone private (after I was told I shouldn’t clog up the mental healthcare system) but only due to my family pitching in for my Christmas present.”

“My GP said there was no point referring me to the CDHB because they don’t deal with adult ADHD so gave me the details for the Psychology Clinic or something – and adult ADHD thing run by Canterbury University but when I rang them they said their waiting list was full so I ended up getting a Skype appointment with a Psychologist in Auckland instead”

“Visited GP, requested referral to psychiatrist, went private as public waiting list was forever. Several visits to psychiatrist later I was formally diagnosed.”

“I got to the point where I couldn’t get out of bed or complete basic tasks. I sought out medication/treatment out of desperation. I got a diagnosis from a private psychiatrist after being told I would have to watch at least 6 months to see someone through the public system.”


The simplest process with to get a diagnosis was through GP then referral to private service, or to go through a private specialist without GP referral 20.9% (28 participants), an expensive process usually with examples listed below: 

“I approached my GP about it, who referred me to a private psychiatrist who diagnosed me and prescribed me rubifen. Overall cost was about $500.”

“I sought out a diagnosis from a psychiatrist that specializes in adult adhd.”

“Suspected for years, mentioned it to a GP after a head injury, which ended up being a catalyst for the diagnosis (my self-created coping mechanisms were disrupted after the injury and I could no longer manage alone). I was referred to a psychiatrist and it was only through the sheer luck of having health insurance through my job that I was able to get diagnosed and medicated by the psychiatrist, avoiding the $450+ per appt fees.”

“I got referred by my GP and was assessed by a psychiatrist 2 months later.”

“had to find a private clinical psychologist”

“Paid to see a private psychologist for assessment”

“I went to a GP who referred me to a doctor”

“Had to go through a GP and get recommended someone”

“I spoke to my doctor who referred me”

“privately paying for diagnosis”


While some have ended up being treated have had massive delays due to medical misdiagnosis or perceived lack of education with GPs, with some still awaiting a diagnosis and without hope 14.9% (20 participants), these examples below:

“I had my first assessment when I was 8 years old and have seen countless mental (counsellors, psychologists, psychiatrists), medical, disability focused and educational professionals (note I was not diagnosed until this year at age 24, after I read an article about someone diagnosed with adult ADHD and then sought out a psychiatrist that specialised in this area)”

“Years of seeking help for insomnia and fatigue with no help, misdiagnosed as depression , finally finding a gp interested in neuropsychology that suggested screening (at 41yrs old, after having given up my career due to poor functioning), no availability of public funding so paid $700 for two Psychiatrist appointments.”

“I feel very privileged that I was able to get an ADHD assessment and subsequent diagnosis. Since 2012 I had seen at least six publicly-funded mental health professionals (including three psychologists), but it wasn’t until I saw a private psychologist who could take the time to learn about my past and symptoms – and explore potential causes rather than only tackling symptoms – that it was suggested to me I sought an assessment for ADHD. In 2019 I was assessed by a private psychiatrist over Skype (as there were no private psychologists in my area at that time), and was given a confirmed diagnosis. I was very privileged to be in a financial position where I was able to pay for the psychologist and psychiatrist appointments.”

 “Told my current Doctor I wanted to be assessed for adhd. Not the first time I’ve brought it up with a Doctor but the first time one has taken me seriously. The first Doctor I told said I didn’t Look like I had it becos I wasn’t moving a lot. I was much younger and not very assertive. Almost 15 years later I’m on meds and I wish I had been taken seriously from the beginning.”

“”Asked GP if I could be assessed. He said he didn’t believe that I was likely to have ADHD given I have post-grad education, and told me to use EAP to talk to Psychologist about what “”rewards”” I might be seeking with delaying behaviours.

Within the next couple of weeks my team got restructured, I went contracting, and no longer was eligible for EAP.”

“My area exclusively has locum GPs, so every time I go to follow up, I have to start from the beginning in regards to looking for a diagnosis and convincing them that I need help”

“Two appointments with different GPs asking about diagnosis process, the first shut down line of enquiry and made me feel too uncomfortable to press the issue, the other referred me to four free sessions with a psychologist to discuss procrastination.” 

“Talked to my GP and had to have multiple sessions convincing them I might have it, then trying to get a psychiatrist to see me”

“I found out information about ADHD, my sister was talking to her friend about herself and her friend said she was ADHD and my sister should get tested. My sister got diagnosed privately and helped me through the same journey. I booked myself in and got diagnosed. I have been diagnosed with depression and anxiety through my gp and have been written off as that. No help to find anything else no matter how crazy or scared I felt.”

“I was diagnosed as a child but my mum didn’t want me to be medicated, had to get rediagnosed at 30 when I decided that I wanted to try medication as a means of managing my ADD as I was very stressed and overwhelmed at work. Told my GP (who offered me anti-depressants as a stopgap measure, which was totally unnecessary), got referred publicly, within a few months I saw a clin psych who rediagnosed me without hesitation and put me on Ritalin.”

“I had to spend nearly $2000 to get a diagnosis and some initial coaching, all private. I also had to self-refer as the doctor I saw at my GPs, didn’t really understand what I wanted.”

“Asked several GPS for diagnoses and ritalin (didn’t know it was restricted), was repeatedly shut down, one GP asked if I was just stupider than I thought, eventually got a nice GP, helped me find a specialist (Dr H), borrowed money from parents to get tested as WINZ are bastards.”

“I asked the doctor for help with managing my life better, and gave him some examples of problems I have that I’ve noticed other people don’t seem to have, and he asked several questions of me, and stated that it wasn’t ADHD or anything similar, that I just had to work harder at making myself do things.

I researched other ways of getting help for these things, but couldn’t find any more help. Apparently you have to be referred by the doctor. I’ve since asked about ASD as well from the doctor who has said that there’s no help for “that kind of thing”, so getting a diagnosis is a waste of time.

Someone suggested I approach our local public mental health centre, but I had a very bad experience with them several years ago over a trauma-triggered breakdown (they refused to listen or help me until I took SSRIs and when I refused to take them because my body reacts dangerously to SSRIs, they then accused me of malingering. They labelled me as “resistant” and upped the number of prescriptions I had to take in order to access care, so I had to discharge myself while still being suicidal to keep myself safe from them), as a result I get a severe panic attack any time I go near them, it would be injurious to my mental health to approach the local public mental health system in this issue.

I am also on a benefit so I do not have the funds to seek private care/diagnosis.

From here, I have no known options to get a diagnosis, so I have to deal with everything on my own – with varying degrees of success.”

“I had to refer myself after being ignored for 20 years by gps”

“Seen GP, had some low level testing there, stopped at referral.”

“Talked to my doctors, have been told that’s just how makes are when explained about my hyperfocusing and forgetfulness, second doctor was more helpful and told me to bring in collections from my parents and such of how I was when I was a kid, git told even if I was a strong candidate that it was highly unlikely I would be seem still since I was highy “successful/functioning “(I think that’s the word ).”

The public health system has worked for 3.7% (5 participants), although some faced significant delays in diagnosis:

“Referred to community mental health services for suspected ADHD and mood disorders by GP, diagnosed with a mood disorder and put on the waiting list for an ADHD assessment, assessed for ADHD more than two years later.”

 “My daughter was diagnosed thru the public system and I realised that I probably had it as well. I made a GP appointment, asked the doc to refer me to a psychiatrist. After a few meeting with the psych I was prescribed ritalin and diagnosed. I was referred to a psychologist and undertook therapy for over a year. All free. In Gisborne”

“Have been diagnosed both privately and publicly, very different experiences. Am now also in a position professionally where I have made diagnoses.”

“I was given a referral to the public mental health team when I asked, and had 2 appointments with a psychiatrist – the initial one was 2 hours long, and the second one as a check in and confirmation of diagnosis.”

“Requested appt with specialist thru public system via gp”

In the remaining entries people have given up on a diagnosis, had been diagnosed as children with no recollection of the exact process, were diagnosed overseas and had their diagnosis confirmed here, some are traumatised from previous experiences, some are still waiting, some had medication concerns, some have only newly discovered that they have ADHD, some had unclear diagnosis descriptions, and a few gave answers not related to the question which were discounted. The answers that have relevance to this research beyond this simple text description I have posted below: 

“Lots of trial and error lots of its your parenting when doing my children lots of discrimination lots of they don’t have it they are fine and lack of school support”

“I always had a suspicion and when everything was getting real hard I borrowed a tonne of money off my mum to get diagnosed and get help.”

“”I did a hella lot of research beforehand–for a couple of years, actually, on and off, trying to decide if I was convinced enough to spend $400+ on an appointment. I needed to basically be sure myself (because $400+ is A Lot), so there was a lot of reading and thinking and lurking on ADHD and ND and ExecDys forums (and even now, I’m still not Entirely Sure, given that I think ASD is also a possibility in addition to ADHD and I haven’t managed to consistently take the meds yet, and that’s apparently a diagnosis method of its own).

I went private. I’d ‘d tried to go through the public health system and my doctor applied for me, even though she was personally dubious–she has very little knowledge of ADHD herself–but they sent back a letter essentially saying ‘we don’t have the funding, go see the national ADHD organisation’, which was deeply unhelpful, but also utterly expected from the public system. My doctor did actually recommend seeing the private psychiatrist I did eventually go see, though.

I have a couple of friends who got diagnosed via that psychiatrist–one of them getting diagnosed was the reason I started being aware of ADHD as potentially applying to me–so I asked them for advice and for what to expect in the appointment. I also did a bunch of reading and searching through the ADHD NZ page backlog to look for psychiatrists that were often recommended, and why they were recommended, and whether any of them had been complained about etc.

And then I booked an appointment. There was, like, a month and a half’s wait. I’m aware I don’t present as immediately ADHD because I have fifty billion compensatory strategies (e.g. very very compulsive overpreparer), so during this time I wrote up a detailed list of symptoms and reasons why. I also phoned up ahead of time to clarify if this psychiatrist diagnosed ASD, because I’d heard he didn’t, and was told by the staff that he did (but it never got brought up in our session).

I wrote the obligatory I’m Going To An Appointment And I’m Freaking Out post in the ADHD NZ group (and was comforted by the comments while on the bus and in the waiting room), and then was incredibly nervous and low-key freaking out the entire way through the appointment, enough to feel absolutely terrible after. Which the psychiatrist apparently Did Not Notice, based on his report. I did not, in fact, need my list for that conversation–my list went into way more depth than the questions I was asked (although it definitely helped me clarify and order my own thoughts prior to the appt).

I was tentatively diagnosed, in that I got a ‘given the evidence, it seems more likely that you do have adult ADHD than you don’t, but you’ll need to take the meds to see if they work and that’s actually the case’, which was not particularly definite as a statement (hence still not being sure). I also did not feel particularly seen or heard by this psychiatrist, so I’m intending to go to another one (pref. capable of diagnosing ASD) when I go for a medication review (once I’ve started taking my meds consistently).

That’s it, that’s my diagnosis experience.”

“Saw a psychiatrist but needed to show him reports from school to ‘prove it’, didn’t have them. Didn’t seem to know about the hidden or inactive adhd symptoms often in women”

“Looked into cost of private psych with student discount, looked online to see if there is a link between cancer survivors and ADHD, looked at if there’s research into use of medications such as Ritalin in those who have difficulty concentrating after chemo, watched videos about living with ADHD.”

“None really, I have discussed depression and anxiety with my gp and a specialist but have only recently started thinking that my difficulty focusing, hyper-awareness, poor organisation and time management, and eclectic interests might be linked to an attention disorder. These have been features of my life since I can remember but I have learned to live with them, so I’m not really sure what help the gp could be – gp visits are expensive too.”

“I asked to be referred to a physiologist and paid out of pocket for appt which ended up with being traumatised”

“I have been diagnosed with General Anxiety Disorder but there are some things in life that don’t feel connected so I’m investigating ADHD as well to see if it’s both or just a really nasty anxiety disorder”

The final question was a free form field allowing people to make any additional comments they wished, 73 participants provided feedback. Some comments were either survey feedback, thanks to the researcher, or personal requests for contact. These have been left out of results. 

The most common theme in this free form field was expressing concern about the lack of support in adult ADHD care or ADHD care in general, some examples here:

“My psychiatrist left the clinic before we finished finding a medication that worked for me and I am not aware of any other suitable psychiatrists in Christchurch so I had to manage my condition without meds”

“Trying to deal with ADHD is so incredibly difficult in NZ. Why?”

“The nurse said in first appointment that the community health probably wont know what to do with me/ my referral”

“I feel a formal diagnosis is the first step to legitimate health care. I’m absolutely stumped as to how difficult the process has been via public means. Completely inaccessible for anyone that doesn’t have income that they can fork out $500-1000 on a potential diagnosis. Also it feels like a lot of doctors might not understand how critical and central it is for lots of issues – ie co-morbidities. 

I’ve already started doing a few helpful things for people with adhd (understanding how dopamine and stimulation works) and it’s making a huge difference to how I function and my quality of life. But if I had a formal diagnosis then I could really harness some healthier mechanisms to deal with adhd and harness its power too.”

“Psychiatrist is very expensive but doesn’t really provide a lot of support apart from giving access to meds, would have appreciated a referral by them or gp to some counseling and coaching and learning about adhd”

“As I further understand how ADHD permeates my life (thanks to ADHD Twitter, largely), I become increasingly distressed about only receiving a diagnosis in adulthood, the lack of support available, and invalidating comments from people around me. The support I really need the most is therapy, but it is financially inaccessible to me.”

“Fortunately I was able to budget to be able to pay privately but know this is a significant barrier to most people. Also the lack of any funded counselling is distressing. In addition we don’t have access to one of the leading overseas medications, Vyvanse, which I’d like to try as my current med is short actin* and i5 is difficult to remember to take the second dose. In addition, having to get a prescription from the dr every month is very expensive, there should be the ability to get 3 month prescriptions which the pharmacy can ensure are only filled monthly.”

“Getting an ADHD diagnosis and the medication I need to function in my day-to-day life should not be a potentially $400 expense.”

“There are no supports funded for adults with ADHD – I was almost 50 years old when diagnosed, and apart from ritalin (which is great) there is no other support around that is funded for me  – medication is only a part of what I need to function”

“The process of diagnosis was lengthy and expensive, I am grateful that my University funded this before I had to come back to NZ (due to covid). My doctor referred me onto a psychiatrist here who had a 6 month waitlist but a friend with ADHD put me on to [ADHD Clinic] who was much shorter and more helpful.”

Another theme was lamenting the stigma and sadness associated with living with ADHD undiagnosed 20.5% (15 participants), examples given here: 

“Attitudes towards adhd in public health sector are appalling, lack of knowledge of how adhd presents in women and girls is seriously lacking and adhd is stigmatized horribly. I had a public health sector try and tell me my 12yo was bipolar, despite myself and my son being diagnosed adhd (with strongly genetic indicators in gene testing), despite there being no evidence of bipolar. He then said “it looks the same on [male name]” and wanted to put her on lithium.”

“In the public health system, in almost any context, if anyone who is undiagnosed raises that they may have ADHD they are often immediately labeled a drug seeker which is patently false for probably almost every case. This is stopping people being able to access medication that they need to treat their ADHD as well as being able to be diagnosed in the first place, and, if this is noted in their file, can lead to further discrimination from other health providers including GPs, hospitals and psychology/counselling/mental health services.”

“Specialist at Gisborne Hospital  stated he did not believe in adult ADHD and strongly implied i was drugseeking”

“I feel like I’ve had a very easy and successful path to adult diagnosis, no doubt aided by my childhood diagnosis, but by the same token I’ve had GPs minimize my symptoms as I’m “high-functioning” and good at masking my symptoms and distress, and offering incredibly patronizing suggestions like “maybe you should try writing to-do lists” as if I don’t already write both physical ones, and digital ones with programmed reminders and alarms”

“It’s frustrating that companies know nothing about ADHD and aren’t able to accommodate to staff who struggle with it. I had to leave my last job at a [their profession] due to HR and management refusing to work with me on making small accomodations to enable me to work efficiently. There should be government provided guidelines and resources for this kind of thing.”

“Due to my age and the attitude of most Gps regarding adult ADHD, I have a very real concern that my medication will at some point be refused or made difficult to access, as it seems general understanding of the presentation in adults/women seems very limited. Also zero help with managing symptoms or life in general, or even information in general about the condition was offered.”

“I think there are probably so many of us, especially women, that have been labelled as lazy or ditsy, but actually have ADHD. Wish I knew before high school.”

“I would like to optimize the life I have left. I sometimes feel hamstrung by my inability to be consistent, on time, organized, proactive in planning and moving forward (ambition), follow though, forgetfulness and clumsiness. In saying that I’ve got an awesome personality and connect in well with people. I just wish I was able to keep more things in head without everything fleeting away.”

“Its a shame it was never picked up when I was younger.”

“It can be really hard having ADHD and trying to get through life on your own with your kids after your girlfriend leaves you.”

“My life would be very different effected my health relationships work education parenting etc if I had of had help when I was younger to be understood taught differently, encouraged not just left to deal with it myself with no understanding. I knew I had it years ago but just got told there’s no such thing. Im glad more awarenesses is slowly coming”

The next most significant section was a request for more education in general across all sectors for ADHD knowledge 15.1% (11 participants), especially for women with ADHD, examples below:

“This condition is poorly understood, more needs to be done to assist with diagnosis and support”

“I especially would love to see more open discussion/available information about women with ADHD and how their symptoms differ, as well as the ways they are pressured to mask negative symptoms from an early age, and consequently fail to be diagnosed. For me, medication has helped A LOT, but bigger picture there is still a lot of healing/work to be done, but it doesn’t feel like there’s much out there atm (unless you’re wealthy).”

“”I have had 3 major mental health issues in my life. In each case the ability of the medical system in New Zealand to respond was pitiful. Had it not been for a supportive partner I would likely not be here responding to this question. Doctors, as primary support contacts, are typically unable to provide quality diagnoses, do not have a network for providing competent MH referrals, and can only afford sufficient time to “uhuh ahaha ok take these tablets” not a diagnosis, and not enough to make a meaningful difference. If I had sufficient support during my first incident aged around 20 or 21, I would likely not have had the subsequent ones. My journey in understanding ADHD and related issues has largely been lead by informal discussion, internet “”diagnosis””, reading as much material as I can get my hands on. I estimate the cost to the taxpayer (simply because of lost taxes) to be 20-30x what any actual medical support might have been earlier in my life. Not funding mental health properly is like not funding dental care for children.

I call on the govt to start training all doctors, including those already “in the field”, on mental health issues, to increase funding for speciality care through pyschologists and psychiatrists, and to build an explicit advisory network for doctors, so that they can be informed, and get competent referrals, for their patients.

I call on the school system to be informed of ADHD and similar MH diagnoses, to be able to catch and support people earlier, so that we do not go through life branded as unable to concentrate, or having failing grades, and that we unblock the potential and  creativity that I found after the education system, and avoid “”self medicating”” that many of us fall into, with drugs, alcohol, and other high stimulus activities.

The illusion that MH is a “cost” on the system, needs to be unveiled, and we need to realise that for every person unable to function to their potential, we accept a downstream cost in schools, workplaces, prison systems, and healthcare, that could have been avoided, just like caries & brushing teeth, by appropriate care and training at the time.”

“Public needs educating on adhd,and more free holistic therapys should be available,to heal from late life diagnosis,and needing to unlearn detrimental coping mechanisms.Pubic needs to understand how debilitating adhd can be.Wish we had brain scans available in nz too,for free”

“”LOL – was thinking of all the things I’d forgotten to add…..

•Daily empathy reminders for spouses 

•How to approach spouses you suspect have ADHD

•How to tell your children your challenges.

•How to tell your children they have ADHD but are normal?

• Approved information handouts/emails for ignorant & arrogant family members, teachers etc – 

outlining general ADHD challenges , 

the 3 types of ADHD and common additional behaviours, eg, ASD, severe anxiety, low mood- depression, constant physical/eye movements, appropriate activities, awareness of sensory overload. Type of communication required. 

When to ask for assistance rather than discipline. 

Explaining thought patterns (your horse drawing example). That person/child is intelligent & normal, 

Their teaching & patience needs to be modified to bring out child/persons talents and not to negatively affect their self esteem because of being born with ADHD – as will lead to irreversible negative effects. That their voiced personal negative  opinions are unhelpful and not required because authorised health & social professionals are aware of child/person and are in constant contact with child/person/guardian regarding school life.”

“I’m comfortable with the fact that I have adhd less comfortable in the fact I pass it on but hey thats life and we just get on with it. Understanding from others would be nice instead of constant battle”

“I did not know until this year that my symptoms were common with adhd. It wasn’t until I was spending a lot of time with a adhd person that they often told me the things I was complaining about and struggling with in life were common symptoms and that I should get a test.”

“I didn’t even know I had ADHD until a month ago, becoming suspicious a few months back after a friend received a diagnosis. I believe ADHD (especially in adults and women) is constantly misunderstood and I’ve only recently realised that my inability to do certain things was due to the way my brain was differently wired rather than me being ‘stupid’ as I have always felt. The inattentive version being particularly less spoken about. As much of a relieving realisation as it’s been, it’s unfortunate that I only found out of this being my reality through a friend, with countless doctors writing off my behaviour as casual procrastination and my own fault.”

The last significant theme was participants talking about their lack of trust in the NZ healthcare system, examples below:

“After being diagnosed I was offered medication but unfortunately it did not agree with me, I did not have the funds to pursue CBT or further psychiatrist appointments and university counseling was even more demoralising because of the lack of knowledge, understanding and support around women with ADHD. Currently am unmedicated and untreated, have learnt to live with the fact that I’ll probably never function 100%”

“I’ve got my assessment tomorrow and I’m ridiculously anxious wondering what if the hundreds of dollars I’m spending will be for nothing. To just be told again that I’ve got high standards of myself, and be provided with no answers as to why my brain doesn’t seem to work the same way as everyone else. This is despite me having an experience where I talked to someone who had recently been diagnosed, and we shared our common experiences of our lives being a hot mess. A friend was listening to this conversation and their listening to our experiences got her to go and seek an assessment herself. Turns out she has adhd”

“It took quite a bit of courage to bring it up with the psychiatrist and so was quite disappointing for it to just be shut down. It feels quite difficult to engage with the ADHD community and find help in other ways without an official diagnosis.”

“as i was always in high stream classes in school (with “could do better” on my report cards) i never felt like anyone understood how hard it is for me to set my mind to a task, or stick with it after i feel like is seems too hard. Friends with an ADHD diagnosis tell me they think that’s what I have but drs tend to brush it off as depression + anxiety”

“”I still don’t know if I have ADHD or not, I feel enough like I might and that it affects my ability to work but because I can “get away with it” and it’s not obvious how much I’m struggling no one including doctors believe me. Even if I don’t have it I really wanted to go through the diagnostic process so I can stop worrying about it. I’ve struggled with anxiety depression before, so therapists and GPs often seem to think that’s the root of the issue, when I actually have the suspicion that the disorganisation, feelings of not living up to potential, and general stress (potential ADHD?) may have been the root of the anxiety and depression, rather than the other way around.

Fighting to see someone who can diagnose me is too much to deal with, doctors left me feeling invalidated and uninformed even of how to pursue diagnosis privately, the psychologist was helpful for general therapy but had nothing useful to say about any potential ADHD symptoms or management, and I can function even though I am often feeling stressed and overwhelmed, so I have mostly given up on diagnosis.”

There were also a number of comments made about difficulty of getting an ADHD diagnosis or treatment due to other comorbid conditions 5.5% (4 participants), examples below:

“Was advised medication not required but long history with anti depressants so not sure if depression is related to non treatment”

“It’s difficult because I have bipolar disorder as well and ADHD meds can trigger mania”

“I would like to get diagnosed, but I have so many other health conditions, I cannot cope with yet another diagnosis at the moment.”

The was one other relevant comment made – expressing concern about self-diagnosis of ADHD:

“I do worry a bit about the current trend of ADHD self diagnosis, as a lot of the most ‘popular’ and discussed symptoms can be attributed to general anxiety too.” 

Discussion

The purpose of this survey was to fill a gap in current knowledge and confirm public healthcare failings for those living with adult ADHD. In line with research from other countries (French et al., 2019), the research suggests there are large gaps in ADHD care, knowledge, treatment, and support. Further avenues for research have also been identified due to the exploratory nature of the survey.

Needs and Concerns

Most of the diagnosed participants were diagnosed privately, which suggests a large lack of equity in care. This is in line with other recent findings that have found that although ADHD medication dispensation rates have increased in New Zealand from 516 per 100,000 in 2007/2008 to 996 per 100,000 in 2017/2018, the distribution of medicines has a male bias, and also there are signs that certain groups are being more undiagnosed than others (D’Souza et al, 2020). Those adults who had been diagnosed in the public system were more likely to have been diagnosed as children rather than adults. 

Qualitative thematic analysis (Braun and Clarke, 2006) showed that common issues that ADHD adults would like assistance with are executive function issues; planning, organizing, and time management; emotional regulation and rejection sensitivity; issues of self-esteem, negative thinking and confidence also featured highly. 

Both the qualitative thematic analysis (Braun et al., 2006) and Likert scale results show a need for increased ADHD education, as well as other research into this field (French et al., 2017; Kooli et al, 2019). General practitioner doctors must be upskilled as well as those in educational institutes. Education must be provided and awareness must be increased in the general population – where ADHD people rated knowledge to be the worst. The effects of negative stigmatisation cause lasting damage to self esteem, and prevent participation in society (Hamed et al., 2015).

Socioeconomic analysis on the costs of ADHD have demonstrated “the individual and societal burden of ADHD in adulthood and highlight the importance of continued support from childhood–adolescent to adult health services and early prevention of multimorbidity”(Du Rietz et al., 2020). This has been confirmed in other studies also (Pallanti and Salerno, 2020). 

New Zealand mental health services must address the care of ADHD children and adults as a priority. The looming fallout of COVID-19 on finances is likely to have lasting effects, people with ADHD are more likely to be unemployed (Hamad et al, 2015) and men with financial issues and ADHD are four times more likely to be at risk of suicide than the general population according to recent population studies (Beauchaine et al., 2020). 

Perceived barriers to accessing care

Almost half the participants for this survey believed they had ADHD without diagnosis and a large number were unable to access support care they needed. Common themes were confirmed around misconceptions and stigmas; constraints with recognition; management and treatment(French et. al, 2019). 

The biggest barriers to diagnosis according to those undiagnosed are the cost of a diagnosis , and the affordability of ADHD specialists, that undiagnosed participants are scared that they do not have ADHD – this could be explained by medical gaslighting where patients are not believed by doctors for reporting their symptoms, indeed this was confirmed with the other option available where a reported a lack of trust in the medical system. Undiagnosed participants also reported that their doctor was unwilling to consider a diagnosis and referring them to private service. Undiagnosed participants also waiting for a diagnosis through the public healthcare system are significant . 

Of those who are diagnosed, large issues have been found in ADHD treatment and care, with an overwhelming majority receiving only medication. While stimulant medication does work to reduce symptoms, it does appear that it provides no long term benefits (Rajeh et al., 2017). The large majority of those who have been diagnosed are not receiving any therapy aside from ADHD medication.

Recent advances in ADHD science – such as ADHD coaching – as described in, Kooij et al., 2019, do not appear to be available here, or are not widely available. ADHD knowledge of these new services is low even among those who have enough knowledge to consider a self-diagnosis or those currently with a diagnosis. ADHD Coaching has shown positive results in multiple preliminary studies (Kubik, 2010; Prevatt and Yelland, 2015; Wentz et al., 2012). When asked if they would engage with this service nearly all participants thought they would try the service if offered, contingent on price, but the majority of ADHD people had not heard of it before this survey.

Limitations of study

No criteria for ADHD self-diagnosis was established. It would have been a good idea to use some statistically proven measure to ensure that people who had self-diagnosed scored highly enough on the ASRS or WURS symptoms tests. 

A longer survey period would have allowed more participants, as well as making the survey available offline to get a clearer picture of ADHD care in New Zealand – limiting participation to Facebook and Twitter would have also had an effect. As I am an independent researcher, a lower level of trust in participating may have been a factor. While every measure was taken to ensure people did not respond multiple times, there were no data restrictions on persons doing so, although unique identifiers and variability of N/A responses showed no patterns of response to alter the data. Where duplication of data had occurred, as with the Safari bug, it was easily eliminated. 

People often don’t know they have ADHD. Knowledge of this condition is low, it’s presentation in women is especially not well understood. This means that there may be large numbers of undiagnosed but unknowing persons who were not included that require care. 

Further Research

With a small number in active care and the vast majority being given just medication to treat ADHD rather than the recommended combined therapy (Rajeh et al., 2017); a more qualitative look into how ADHD affects those with an official diagnosis are affected or educated about day-to-day presentation would be an area of interest. While perceived public knowledge was measured in this survey, no qualitative or quantitative question was asked about how well participants understand exactly how ADHD affects day-to-day life. Anecdotally, in ADHD support groups, there have also been reports of widespread discrimination of ADHD people in workplace and schooling environments.

A study could be run in New Zealand on the efficacy of ADHD coaching, this service could be publicly funded and used to measure specific outcomes such as academic performance as done overseas, with recommendations that universities trial an ADHD coach on staff to assist with academic outcomes of ADHD persons (Parker et al, 2011). This could be a great alternative therapy to expensive services.

General practitioner knowledge of modern ADHD presentation could be tested to see if this perceived barrier to care that was identified by those with undiagnosed ADHD was through lack of knowledge, care, and treatment of the condition. Anecdotally, through support groups I am a part of, and with some data provided here, people have complained also that mental health professionals working in the field have little understanding also. These could be addressed within the same study.

Conclusion

Adult ADHD care in the New Zealand medical system is unacceptable. NZ is not following best health practices, and outdated understanding of ADHD is preventing those with the condition from getting treatment.The dangers of going undiagnosed and untreated is contributing significant harm to this community – racial minorities and women appear to be most at risk. A rapid response by health and education officials must be prioritised in order to prevent further harm, using modern breakthroughs in ADHD treatment to get people the help they need. 

Three key recommendations are to upskill medical healthcare professionals, especially GP doctors, on modern presentation of ADHD, especially in women. There are great new tools to assist with symptom presentation to help with diagnosis such as the Mind Excessively Wandering Scale (MEWS) alongside the existing ASRS and WURS, which appears to be invariant between sexes, and can’t be masked as other symptoms can (Kooij et al., 2019).

Increase public healthcare availability and funding as a priority to address the needs of ADHD adults. Inaccessibility of diagnosis and treatment is preventing those with the condition from getting the help they need. People with ADHD are at risk of severe and lasting negative outcomes if undiagnosed or untreated (Hamud et al., 2015). 

Run public media campaigns on ADHD. Show modern understandings of presentations of symptoms. Make use of existing resources that internet content creators have made to rapidly improve knowledge of the condition in the general public in order to reduce effects of stigmatization, and discrimination.

References

Beauchaine, T. P., Ben-David, I., & Bos, M. (2020). ADHD, financial distress, and suicide in adulthood: A population study. Science Advances, 6(40), eaba1551. https://doi.org/10.1126/sciadv.aba1551

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa

Brevik, E. J., Lundervold, A. J., Haavik, J., & Posserud, M. (2020). Validity and accuracy of the Adult Attention‐Deficit/Hyperactivity Disorder (ADHD) Self‐Report Scale (ASRS) and the Wender Utah Rating Scale (WURS) symptom checklists in discriminating between adults with and without ADHD. Brain and Behavior, 10(6). https://doi.org/10.1002/brb3.1605

DSM-5 Fact Sheets. (n.d.). Retrieved 1 February 2021, from https://www.psychiatry.org/psychiatrists/practice/dsm/educational-resources/dsm-5-fact-sheets

D’Souza, S., Bowden, N., Gibb, S., Shackleton, N., Audas, R., Hetrick, S., Taylor, B., & Milne, B. (2020). Medication dispensing for attention-deficit/hyperactivity disorder to New Zealand youth. The New Zealand Medical Journal, 133(1522), 84–95.

Du Rietz, E., Jangmo, A., Kuja‐Halkola, R., Chang, Z., D’Onofrio, B. M., Ahnemark, E., Werner‐Kiechle, T., & Larsson, H. (2020). Trajectories of healthcare utilization and costs of psychiatric and somatic multimorbidity in adults with childhood ADHD: A prospective register‐based study. Journal of Child Psychology and Psychiatry, 61(9), 959–968. https://doi.org/10.1111/jcpp.13206

French, B., Sayal, K., & Daley, D. (2019). Barriers and facilitators to understanding of ADHD in primary care: A mixed-method systematic review. European Child & Adolescent Psychiatry, 28(8), 1037–1064. https://doi.org/10.1007/s00787-018-1256-3

Hamed, A. M., Kauer, A. J., & Stevens, H. E. (2015). Why the Diagnosis of Attention Deficit Hyperactivity Disorder Matters. Frontiers in Psychiatry, 6. https://doi.org/10.3389/fpsyt.2015.00168

Kooij, J. J. S., Bijlenga, D., Salerno, L., Jaeschke, R., Bitter, I., Balázs, J., Thome, J., Dom, G., Kasper, S., Nunes Filipe, C., Stes, S., Mohr, P., Leppämäki, S., Casas, M., Bobes, J., Mccarthy, J. M., Richarte, V., Kjems Philipsen, A., Pehlivanidis, A., … Asherson, P. (2019). Updated European Consensus Statement on diagnosis and treatment of adult ADHD. European Psychiatry, 56(1), 14–34. https://doi.org/10.1016/j.eurpsy.2018.11.001

Kubik, J. A. (2010). Efficacy of ADHD Coaching for Adults With ADHD. Journal of Attention Disorders, 13(5), 442–453. https://doi.org/10.1177/1087054708329960

Matte, B., Rohde, L. A., & Grevet, E. H. (2012). ADHD in adults: A concept in evolution. ADHD Attention Deficit and Hyperactivity Disorders, 4(2), 53–62. https://doi.org/10.1007/s12402-012-0077-3

Pallanti, S., & Salerno, L. (2020). The Socioeconomic Burden of Adult ADHD. In S. Pallanti & L. Salerno (Eds.), The Burden of Adult ADHD in Comorbid Psychiatric and Neurological Disorders (pp. 1–20). Springer International Publishing. https://doi.org/10.1007/978-3-030-39051-8_1

Parker, D.R., Hoffman, S.F., Sawilowsky, S., & Rolands, L. (2011). An Examination of the Effects of ADHD Coaching on University Students’ Executive Functioning. The Journal of Postsecondary Education and Disability, 24, 115-132.

Prevatt, F., & Yelland, S. (2015). An Empirical Evaluation of ADHD Coaching in College Students. Journal of Attention Disorders, 19(8), 666–677. https://doi.org/10.1177/1087054713480036

Rajeh, A., Amanullah, S., Shivakumar, K., & Cole, J. (2017). Interventions in ADHD: A comparative review of stimulant medications and behavioral therapies. Asian Journal of Psychiatry, 25, 131–135. https://doi.org/10.1016/j.ajp.2016.09.005

Schoonenboom, J., & Johnson, R. B. (2017). How to Construct a Mixed Methods Research Design. KZfSS Kölner Zeitschrift Für Soziologie Und Sozialpsychologie, 69(S2), 107–131. https://doi.org/10.1007/s11577-017-0454-1

Sedgwick, J. A., Merwood, A., & Asherson, P. (2019). The positive aspects of attention deficit hyperactivity disorder: A qualitative investigation of successful adults with ADHD. ADHD Attention Deficit and Hyperactivity Disorders, 11(3), 241–253. https://doi.org/10.1007/s12402-018-0277-6

Wentz, E., Nydén, A., & Krevers, B. (2012). Development of an internet-based support and coaching model for adolescents and young adults with ADHD and autism spectrum disorders: A pilot study. European Child & Adolescent Psychiatry, 21(11), 611–622. https://doi.org/10.1007/s00787-012-0297-2

Figures

Figure 1. 

Figure 2. 

Figure 3. 

Appendices

Appendix 1.

Introductory statement for survey:

Kia Ora,

Who is this survey for?

The survey is open to all adults in Aotearoa New Zealand who suspect they have adult ADHD (Attention-Deficit Hyperactivity Disorder), as well as those with a formal official diagnosis. This survey is compiled and presented by me, Rory McCarthy, independently of any educational institutions or organisations.

What is the purpose of the survey?

Findings from the survey will contribute to a submission to the New Zealand Minister of Health. The intention is to provide a look at what our needs are and how well our needs are being met within the public health system in Aotearoa New Zealand.

Background and rationale

Since I was diagnosed with ADHD in 2013, I have noticed that in New Zealand, at least for adults, support and medical treatment beyond the prescription of stimulants are minimal, and education about how ADHD and medication affect day-to-day life has been absent or unavailable. There has been no public counselling (or very limited) for the damage that living with undiagnosed ADHD can do. I am dedicated to making sure that all ADHD services are improved for adults living with these conditions. 

Further to this, I have discovered that nearly all people who had Adult ADHD had been diagnosed through private health care – meaning that this is a problem that is being addressed in a non-equitable way, and will not meet our obligations to Ti Tiriti o Waitangi.

I am looking to train as an Internationally Certificated ADHD Coach, and currently devote my time to raising awareness on Twitter of ADHD, as well as trying to advocate through officials for better ADHD support. In 2019, I became active on #ADHDTwitter and discovered that many young college students, comic creators and tweeters were able to communicate the experience of living with ADHD far better than medical staff I had dealt with during my time in the New Zealand medical system: the contributions of those with lived experience of ADHD are an essential part of improving service. 

In order to provide data to our Minister of Health – Andrew Little, please consider filling in this survey. 

Data Collection

All data will be anonymous and will be destroyed within 60 days of survey completion, after the data has been summarised. You can exit the survey at any time and your data will be withdrawn and should contact the survey creator, Rory McCarthy, if you wish to withdraw your data after completing the survey.

In some cases it would be useful to follow up via Zoom or other messaging platforms. At the end of the survey there will be a link if you would be open to being contacted. This data will be stored separately in line with all privacy practices. It will never be provided to a third party and will only be used by the survey creator Rory McCarthy to arrange further discussion if you would like to do so on this topic. This data will be destroyed at the end of the survey period also.

If you would like to receive a summary of the findings, please contact me at: [redacted email address]

Ngā mihi nui,

Rory McCarthy (ADHD Advocate, Researcher, and Educator)

ADHD and Autism Care For Women Must Be Addressed

IMPORTANT: To trans women and non-binary people – there’s not much definitive research on how you have been failed in ADHD/Autism care yet – so I will be referring to women as they are in the currently available science. You need far more inclusion in gender differences studies and it’s not my intention to make you feel excluded if it comes across that way – I am reporting on academic science I can find. Please if you see me use the term women, trans women are women. Due to the effects of transmisogyny – these same issues will apply to you, but there will be unique considerations also.

Trans rights are human rights.

If you can’t accept that – no other science I show you will matter because you can’t pick and choose the replicable science you want to “believe”.


I’ll start this off with a story. Someone who has become a great help and friend to me recently had tried to get help for their wife with suspected Adult Deficit Hyperactivity Disorder (ADHD). When they went for assessment they were diagnosed with “borderline ADHD”. As in close to being ADHD but not enough. There is no such thing as borderline ADHD. (This also wasn’t a diagnosis of comorbid Borderline Personality Disorder and ADHD). The treatment instead that was given to treat this “edge case” of ADHD – was anti-anxiety medication and to persist with their anti-depressant medication.

After looking closer and at the more recent work with women and girls who have ADHD it suggests that this is an prime example of medical bias – and it’s the result of bad science, and outdated views – women are held to different standards for ADHD diagnosis. This seems like a misdiagnosis.

It’s really bad for women with ADHD/Autism

To women, I am so sorry. I am sorry that the entire medical profession has been gaslighting you for years. I am sorry that psychological researchers have failed you for so long. I am sorry that you have been denied validation of your conditions. I will show you how you have been failed and why but some of this will be tough reading – it was for me.

There’s a specific kind of hell with living with ADHD or Autism or both undiagnosed. You constantly believe that you’re not as good as anyone else. You constantly assume that you are “crazy” or “hysterical”. You’re constantly becoming someone who you don’t want to be. So you start masking your symptoms with “hacks” or things you’ve found that seem to work for you, you limit behaviour that is natural to conform to an idealistic “normal” standard. You suppress completely natural feelings and behaviours for your mind.

The effects of socialisation and specifically the patriarchal desire for women to be more subservient leads women to mask faster, they are more prone to this behaviour than men. Society’s gender bias in how men and women should behave is vastly different. Women do far more unpaid labour. The effects of being an undiagnosed woman will mean that you are having to put in more effort constantly than your undiagnosed male peers. This must change as a priority.

Usually I have focused my articles on either ADHD or Autism. There’s a lot of overlap – where specific behaviours exist or reasons for not getting diagnosed I will make a distinction.


A brief (but incomplete) chronological history of ADHD and Autism

I have to start this section with a little historical context – this is not to absolve the issues of misdiagnosis but to explain the historical contexts which have allowed them to occur. I’ll post a timeline here and then discuss it a bit further below. Some of the language here is really problematic but I am quoting it as is.

Timeline of ADHD and Autismin Science:

  • 1902 – (ADHD) British Pediatrician Sir George Still provides an early description of what would become ADHD as “an abnormal defect of moral control in children”
  • 1908 – (Autism) Swiss psychiatrist Eugen Bleuler first uses the term ‘autism’ to describe schizophrenic patients are “profoundly withdrawn and self-interested”
  • 1936 – (ADHD) Dr Charles Bradley discovered a medicine called benzedrine is effective in helping children with performance or behaviour problems in school. His research contemporaries ignore his findings.
  • 1943 – (Autism) American child psychiatrist Dr Leo Kanner describes 11 children who were highly intelligent but “displayed a powerful desire for aloneness” as well as “an obsessive need for sameness”. This was later referred to as “early infantile autism”.
  • 1944 – (Autism) German Nazi Scientist and Eugenicist Hans Asperger describes a ‘milder’ version of autism known as ‘Asperger’s Syndrome’. In his studies all subjects were boys who were highly intelligent, with obsessive specific interests, and had trouble socialising.
  • 1952 – (ADHD/Autism) The first ever Diagnostic and Statistical Manual of Mental Disorders (DSM) is published. Children with autism symptoms are labelled as having childhood schizophrenia.
  • 1968 – (ADHD) A new condition called ‘Hyperkinetic Impulse Disorder’ is added to the second publication of the of the DSM (DSM-II). Hyperactivity was thought of as an indication of brain damage.
  • 1977 – (Autism) A breakthrough study on twins finds that autism is caused by genetic and biological differences in the brain.
  • 1980 – (ADHD/Autism) Hyperkinetic Impulse Disorder is renamed to Attention Deficit Disorder (ADD) as they believe the main symptom isn’t hyperactivity, but instead difficulties of attention. “Infantile autism” becomes listed for the first time, and is seperate from schizophrenia. The DSM-III is published with these included.
  • 1987 – (ADHD/Autism) A revised edition of the DSM-III-R is released. It includes the term Attention-Deficit Hyperactivity Disorder (ADHD). “Infantile autism” is replaced by “autism disorder” – intensive behavior therapy is pushed as “revolutionary” in “treating” autism.
  • 1994 – (ADHD/Autism) Asperger’s Syndrome is added to the DSM-III-R. ADHD is divided into three subtypes: predominantly inattentive, predominantly hyperactive, and combined.
  • 1998 – (Autism) – The hugely discredited and completely false study on the MMR vaccine is published linking autism to vaccines with no scientifically valid or replicable proof. (This stalled Autism understanding).
  • 2000 – (Autism) Vaccine manufacturers remove thimerosal (due to the false vaccine/autism link) allowing crackpots to run wild on vaccine science and autism.
  • 2006 – (ADHD) A number of studies around this time show that ADHD persists into adulthood.
  • 2013 – (ADHD/Autism) The DSM-V is published. ADHD criteria is expanded to cover more of the age range of adolescents and adults. The three subtypes of ADHD are now called “presentations”, condition can be mild, moderate, or severe. All subcategories of autism are folded into one new definition. The condition Asperger’s syndrome is no longer considered a separate condition. Autism Spectrum Disorder (ASD) is defined by two categories – impaired social communication and restricted or repetitive behaviours.

Some quick takeaways:

  • Science said people with ADHD or Autism were brain damaged until that was disproven – instead our brains are wired differently in most cases. Science is prone to failure – lobotomies were considered valid and reasonable science.
  • All of this science had a male bias. Male-ness of ADHD and Autism was prevalent up until very recently when understanding began of feminine presentation of both ADHD or Autism.
  • Scientific contributions of women to this field have been constantly erased.
  • The scientific field has always been dominated by men.
  • The autism and vaccine “link” caused a massive delay in scientific research on autism – this significantly stalled a lot of research as massive replication studies were done (and no link was found – the methodology of the first study was terrible).
  • Adult ADHD wasn’t even recognised or researched until 2006. It’s still very poorly understood. Adult autism is similar.
  • Asperger’s is a term you should probably not use to identify yourself if you were diagnosed with it – you have Autism or Autism Spectrum Disorder (either of these is ok). Asperger’s syndrome is not a valid diagnosis anymore.

Why are women under diagnosed? A few key reasons.

Patriarchy – A potential cognitive bias explanation – Science informed doctors – Doctors informed science. Yay science? No, just bad science.

Science around ADHD and Autism has been patchy, as developments in understanding of these conditions has increased, we are beginning to see how much science has failed women especially.

In science on both these conditions – almost all articles from very early on till just in the last decade have always spoken to the prevalence of ADHD/Autism being higher in boys/men than girls/women.

Gender differences have been reported in the prevalence rates of ADHD, with the published literature indicating that the prevalence of ADHD in boys is 2- to 9-fold higher than in girls in clinical samples and 2- to 3-fold higher in epidemiologic samples.These findings are consistent with the 3- to 16-fold higher prevalence of ADHD in boys than in girls across European countries as well.

Citation

There’s a phenomenon in psychology known as a self-fulfilling prophecy. A summary is that when someone believes that something is likely to occur, they modify their behaviour so that thing occurs.

The early science focused on boys, the main research into ADHD/Autism that was done early on in preliminary studies focused almost entirely on boys. The presentation of these conditions in the DSM versions then informed doctors. Doctors then were less likely to ascribe ADHD and Autism to women due to the science.

Science then did studies into diagnosis rates of men and women. Men were more likely to be diagnosed with ADHD/Autism than women.

Can you see the issue?

While it’s very hard to prove a causal link here due to scientific rigour needed, it seems a fair assumption to me that as a Doctor; if a patient presented themselves as ADHD/Autism, I would be more likely to diagnose men rather than women with these conditions with confidence.

Now when I do this, men show up more in diagnosis studies, and then these studies are like – SEE THE SYSTEM WORKS!

Patriarchy – Science informed science to cover their asses. Neuroscience – It’s big brain time.

I don’t know how to say this without trying to scare you off completely but most science has a lot of issues. These issues are being addressed as critique of science in the past has been highlighting a lot of issues. But some of the worst science done has suggested theories that have no basis in reality. A lot of science was conducted based on the premise that ADHD and Autism occured more in men – so they did studies to find out why.

Neuroscience (study of the brain and nervous system) has run with some pretty wild theories over the years – let’s discuss the Extreme Male Brain Hypothesis.

The Extreme Male Brain (EMB) Hypothesis of Autism- This hypothesis states that male and female brains are wired differently; therefore Autism is more likely to occur in men than women as a result of neurological development due to gender differences or put simply men act like men because they have men brains, women act like women because they have women brains.

I mean looking at it, it seems reasonable – we’ve been taught that men and women are fundamentally different due to sex organs every chance we get from birth – why wouldn’t this be true of brains?

Then you realise that they are trying to say that women are hardwired for empathy and social competency, and men are are good at systemizing (understanding and building systems). This is a pretty bad leap of logic. When tested under scientific rigour – this didn’t hold up too well (but it is still a widely believed hypothesis).

The EMB is inconsistent with meta analytic research illustrating more similarities than differences in performance of males and females across psychological domains (e.g., cognitive abilities, social behavior, and personality) in childhood through adulthood

CITATION

The problem is that when measuring these neurological differences with actual people in the general population the traits they describe are present in both women and men, the overlap of these traits disproves the hypothesis. It’s like 1950’s level understanding of gender differences. To think that neurodevelopment won’t be affected by society and influenced by gender coding everything is bad science.

You can read the paper I have cited there for more critical analysis – but I think a lot of neuroscience is pretty awful at best – as imaging studies improve there may be more substantial proof of this, but current neuroscience has made many assumptions that are unreliable.

The brain is incredibly complicated, there’s neurochemicals, transmitters, receptors, impulses – your brain is doing a lot all at once – seeing, hearing, feeling, smelling, focusing attention, thinking… Reducing neuroscience down to neurological traits such as empathy brain and structural brain seems like an extremely irreplicable reductionist approach to me, especially when we know things like trauma can alter the brain itself.

Patriarchy – other biases at play – convenience sampling

A lot of issues with modern science and replication of results – has been convenience sampling. The field of social science especially has been challenged by cultural differences as most social science was conducted at universities using college students from affluent white backgrounds – this convenience sampling bias shook the very foundations of the field.

In the Autism/ADHD context it means a lot of research has been prone to this bias. When finding research participants you take what you can get, as there’s no way to legally mandate participation due to ethical violations.

In the case of autism this is very apparent:

In a qualitative review of 392 empirical articles obtained through a search using the keyword ‘‘autism,’’ it was estimated that 80 percent of the collective ASD study samples had been male on average, and of studies including both genders, only five percent (20 articles) analyzed dependent variables separately for male and females.

CITATION

A trend emerging?

Patriarchy. It’s just patriarchy.

I keep reading more and more about it, and the more I see, the more I know that we live in a patriarchal society.

Women are less likely to have their learning disabilities accommodated for than men. Women are less likely to be diagnosed by doctors. Women are less likely to be believed about their symptoms. Women are more likely to be given a diagnosis of anxiety or depression than either of these conditions correctly. Women are more likely to be doubted when challenging these diagnoses.

STOP GASLIGHTING WOMEN

The other trend that keeps popping up is that women are better at adapting to our society (or specifically that women mask better than men their ADHD or Autism behaviours). I can’t stop thinking about patriarchy – this is because conforming is something women are expected to do more than men. Being different or speaking out is acceptable if a man but not if a woman.

I don’t know how to tell you that our society is ruined for women – but it is. It’s totally broken.

I kept reading through this and I keep identifying with the “feminine” experience of ADHD and Autism. Gender coding traits is awful – it’s a limited understanding of gender. It’s holding us back. [This has also made me realise that I am non-binary].

The list of reasons all points to one thing, fundamental issues with the structural nature of society. I was going to make this longer. I will provide a two searches for papers at the bottom but they are all dancing around the issue that sexism (conscious or unconscious) in science is a major problem, and the problem is caused by major problems with our society.

Academic institutes need to fix structural issues around participation and safety for women – or we are going to keep getting garbage science.

Further Reading

ADHD and Autism are going undiagnosed – barriers to treatment and self-testing

(You can read a previous blog about me and my advocacy)

I will repeat something from the above article – I was diagnosed late in life – I was diagnosed with Attention Deficit Hyper Activity Disorder (ADHD) at 29, and my Autism Spectrum Disorder (ASD – This is it’s official name but I will refer to it as Autism as some in the community have taken issue with this classification and I want this to be as inclusive as possible) was diagnosed eight years later correctly after assuming I had a comorbid anxiety disorder.

DISCLAIMER: THIS IS NOT OFFICIAL MEDICAL ADVICE – I HAVE NO RELEVANT QUALIFICATIONS IT’S PROVIDED AS IS FOR EDUCATIONAL PURPOSES ONLY.

I’m going to break down a lot of the reasons why this has happened, why it’s a concern, and how you can take some online self tests that will give you a fairly accurate idea of whether you should seek treatment. Unfortunately seeking treatment can be difficult due to the barriers – for this reason I believe that self-diagnosis is valid. I was self-diagnosed for both these conditions before seeking a formal diagnosis. Remember that these must be persistent and you believe them to affect you and prevent you from living a thriving full life.

I will provide article citations as I go through but I won’t reference in an academic style. Please note that this science has been done generally through high income Western education institutions, and I am not able to say with confidence that this will be the same for countries outside these parameters although some studies are also from these nations on specific barriers.

In order to make sure I am not talking about historical barriers to issues in ADHD and Autism treatment – I have limited the research done in this area to articles dated 2017 onwards.

These studies all have limitations but the wealth of evidence on one key point is pretty overwhelming. ADHD/Autism is still going massively undiagnosed.

(IF YOU ARE UNABLE TO ACCESS ARTICLES DUE TO THEM BEING LOCKED BEHIND A PAYWALL – PLEASE DO NOT USE SCI HUB. SCI HUB CONTAINS BILLIONS OF ACADEMIC INFORMATION THAT HAS BEEN ILLEGALLY MADE AVAILABLE TO THE PUBLIC AS THEY BELIEVE IN FREE ACCESS FOR KNOWLEDGE – BUT DON’T USE IT.)


Barriers To Entry for Attention Deficit Hyperactivity Disorder (ADHD)


Need for Education

A common theme that has kept coming up in papers is that most people do not know what having ADHD actually looks like. The literature that most educational institutes have historically used, has been outdated and relying on ADHD science from early versions of the Diagnostic and Statistical Manual of Mental Disorders (DSM) – the main psychiatric manual for diagnosis. Science on ADHD (originally added to the DSM in 1968) has vastly improved understanding within the last decade. Outdated views on ADHD are leading large numbers of people undiagnosed through lack of knowledge of the disorder – especially women, minorities, and failing to understand cultural differences.


Teachers

Teachers have shown in multiple studies [reference, 2nd reference, 3rd reference] that their knowledge of ADHD is sub-optimal, often holding onto out dated tropes like the common archetype (“hyperactive loud boy”) associated with the outdated scientific literature on the presentation of ADHD. On ADHD knowledge tests (symptoms, causes, nature, and treatment for the disorder) teachers score as low as 47.8% in some parts of the US to as high as 77.5% in Canada [reference]. This is largely consistent in the US with poor understanding of the mental health generally (28% believe they have appropriate knowledge[reference]) with only 34% acknowledging that they have the the skills[reference].

There are signs that this educational and teacher training programs are improving this knowledge, with significant variance between preservice (in training) and in-service (current teachers)[reference].


General Practitioner Doctors

One of the main barriers to getting a diagnosis can be your General Practitioner (GP). (Not sure if this is a universal term but it refers to the Doctor you would see first within the medical system – another term I have seen is Primary Care Physician (PCP)).

I don’t think I can summarise any better than the below pullquote from this mixed-method systematic review:

The main theme highlighted by this review related to the need for education on ADHD. Thirty-seven papers identified issues related to a lack of education on ADHD, representing a wide range of countries, 14 from the US, 7 from the UK, 3 from Australia, 2 from the Netherlands, 2 from South Africa, 2 from Canada, and 1 each from France, Singapore, Pakistan , Finland, Brazil, Iran and Switzerland . These papers highlighted both a lack of initial training, as well as inadequate training on ADHD. They also highlighted a lack of awareness, experience, understanding and knowledge of ADHD. Most PCPs also reported a lack of confidence about ADHD and in treating ADHD. These factors often hindered general knowledge and understanding of ADHD.

CITATION

I will have some specific results of the experiences of ADHD care in Aotearoa New Zealand from the perspective of currently diagnosed and self-diagnosed persons with ADHD – but it seems this trend is very applicable here too.

Media Representations of ADHD

In news media, film, and television ADHD presentation and understanding is awful.

News Media

All of the statements I make will be based on this comprehensive overview in this source.

Stories are constantly run to undermine or obfuscate scientific information around ADHD. They have debated it’s existence (when it has been proven in science over 50 years), created moral panics about the over-prescription of stimulants – often running stories on college students who abuse ADHD medication (which while an issue is not as large scale as it seems).

They have constructed a narrative around extreme behavioural problems, people with ADHD being ‘naughty boys’, or blamed parents for neurological conditions (especially single mothers, and working mothers).

The misrepresentation of science in news media has created exaggerated claims of the abilities of ADHD medicines, while inadequately showing the potential harms. This exaggeration of effects has lead people to engage in drug seeking behaviour.

One of the main factors in all of this has been media’s complicity in propagation of newsworthiness and the decline of scientific authority. Newsworthiness (whether something will be published) is prone to bias of those who run editorial rooms and is influenced by corporate ownership of media. Scientists are often hesitant to present their findings due to inaccurate science representation, often altering the outcomes to frame the existent media narrative. e.g. issues such as emotional regulation will be framed as “bad behaviour” implying that it’s not a neurological condition and that persons with ADHD willingly choose to participate in.

Stereotypes are a common feature of ADHD representations – and implicit biases and outdated understanding of ADHD means that they will publish stories that align with pre-existing media narrative around the condition.

There are more issues than that but news media is largely culpable in reinforcing negative stereotypes, obfuscating the science, making sensational claims, platforming experts with no relevant field experience, or highlighting studies that are still awaiting peer review that do not get published due to glaring methodology errors.

Film and Television Representation

I have yet to see a TV show that portrays what life is like living with ADHD. There’s not much research on this specific area in academic science but a few media articles have been written on problems with in representation.

Popular culture’s dated portrayal of ADHD as shorthand for ‘lazy’, ‘stupid’ or ‘deviant’ reinforces the stereotype that the condition is a problem only for criminals or naughty boys

ADHD will remain misunderstood until TV shows us characters who aren’t ‘lazy’, ‘naughty’ stereotypes

Indeed I believe this representation is one of the most harmful as this is how large portions of the general public get their information from on ADHD. In my recent survey, public understanding and perception is thought of as being extremely naive and uninformed.

This is an issue especially for women who have very little ADHD representation, and when represented generally are shown as having more of the male dominant forms of ADHD (the hyperactive rather than the inattentive subtype.) (Side note: Although not specifically stated – Rue from Euphoria (US) is a good representation of ADHD or Autism and it’s struggles in my personal opinion from my experiences).

I might come back to this topic in a later blog. Due to the lack of academic data on this I am not comfortable making more definitive statements – I do know that public understanding of ADHD is atrocious from my own experiences.

Stigmatisation of ADHD

Due to all these factors listed above people who do finally admit they are ADHD people face stigmatisation in education, workplaces, real life. People often do not disclose their ADHD status. I was very quiet about it (especially meeting new people) between 2013-2019. The stigmatisation around ADHD means that instantly you’re thought of as “less than”.

I actually can’t write too much on this topic at the moment as this is a massive trigger for lowering my self-esteem. I am proud of having ADHD, but it’s dredging up a whole list of reasons why I understand that others do not proudly share that fact. I am also in a position of privilege, meaning that I do not have to face other huge barriers in society – I can talk about my ADHD because I am in a position to do so.

This stigmatisation can cause parents to refuse diagnosis of their children and themselves, and lead to people living with manageable but extremely difficult day to day lives. Parents are some of the biggest barriers for children who have been diagnosed because of the stigma that comes with this condition. [source]

If you would like to read up on the effects of stigmatisation – this journal article on lived experience of ADHD is very comprehensive: ADHD in adulthood.

Cost and Availability of ADHD Treatments

ADHD care is expensive. It’s nearly entirely private for adults in New Zealand meaning that those with money can afford to seek an official diagnosis. The amount of ADHD specific services is not adequate – and have heard anecdotally from doctors that sometimes they do not refer as the service is overwhelmed.

Seeking a public diagnosis in New Zealand for ADHD is extremely difficult to the point of nearing on impossibility. The services are under massive strain from years of underfunding along with significant mental health impacts of living through the COVID-19 pandemic.

The quality and price of private treatment is varied. And some describe going to get diagnosed as an expensive lottery. [source]

In addition to this, even when diagnosed – no support is offered unless you pay out of your own pocket. The support network of health professionals around ADHD treatment (specifically in adults) is haphazardly organised. No specific treatment plans or counselling support is offered to adults unless they pay significant costs to treat the underlying damage from living with the condition undiagnosed.

Barriers summation and Autism similarities

There are many significant reasons why ADHD is not recognised. I have listed what I believe to be the main reasons above, if you read linked articles you can find more. These all contribute to lacking an understanding to seek a diagnosis or preventing you from getting a diagnosis.

With Autism almost all the same barriers occur – the prevalence of bad science, male-ness of the initial criteria, poor understanding of masking behaviour (masking is the act of limiting natural behaviour to conform to a “normal” society), unaffordable support services, doctor hesitancy to refer to diagnosis etc… (I will do a blog soon but I want to talk about self diagnosis and I have limited time).

Self diagnosis of ADHD/Autism

DISCLAIMER: THIS IS NOT OFFICIAL MEDICAL ADVICE – I HAVE NO RELEVANT QUALIFICATIONS IT’S PROVIDED AS IS FOR EDUCATIONAL PURPOSES ONLY.

Self diagnosis has been a huge area of interest in modern academic science. As education and understanding improves; more people realise that the troubles that they have been having which have been labelled as something such as anxiety or depression may have another underlying cause. It’s an important note that official diagnosis is important – but due to barriers like the ones listed above people can not get an official formal diagnosis. I self diagnosed both of my conditions before the medical profession, and these diagnoses were confirmed. Remember that these behaviours must be frequent in day to day life.

Below I will offer some tools that have high statistical validity and reliability when performing self-tests for ADHD and Autism. These have limitations, but if you score highly on these tests it might be worth pursuing a formal diagnosis if you have the means to.

Self Diagnosing ADHD (Two Tools)

The higher your score on these tests, the more likely you have ADHD.

The Adult Attention‐Deficit/Hyperactivity Disorder (ADHD) Self‐Report Scale (ASRS):

Available Online here

The Wender Utah Rating Scale (WURS) again this is a modified version – they have removed the irrelevant questions:

A slightly modified version here – available Online here

Science to back the validity and reliability of self-diagnosis in ADHD:
https://onlinelibrary.wiley.com/doi/full/10.1002/brb3.1605
https://academic.oup.com/fampra/article/35/3/336/4645208

Self Diagnosing Autism

Autism is a lot more complicated. I didn’t feel comfortable self-identifying with the label until I got an official diagnosis. I still believe that self-diagnosis is valid but the science here is not as clear as the ADHD tests. Things like high IQ also can muddy these results. PLEASE NOTE: NO SPECIFIC SCIENCE EXISTS FOR THE IDR-ASDT. I don’t know how it’s different. The RBQ-2A is good at diagnosing but this is uncertain to me, this was the test I used before seeking a formal diagnosis.

The IDRlabs Autism Test (IDR-ASDT) based on the RBQ-2A:

Available Online here

Science for the RBQ-2A Test (again I do not know the significant differences between the IDR-ASDT and RBQ-2A):
https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0242-4?optIn=true

Where to from here? Positive signs

The European Network Adult ADHD put out a consensus statement on diagnosis and treatment of Adult ADHD – it’s an amazing document with incredible recommendations, and shows the frustrations of issues within this space – I’d recommend reading the whole thing. EDIT: fixed this to updated version from 2019.

https://www.cambridge.org/core/journals/european-psychiatry/article/updated-european-consensus-statement-on-diagnosis-and-treatment-of-adult-adhd/707E2A36539213CF85EACCA576F47427

What did diagnosis feel like for me ?

Hrm… My ADHD diagnosis was first (it took a further 8 years to correctly identify my comorbid Autism).

I will cover the feelings of being diagnosed in more depth later as there’s a lot of research in this area that I want to discuss. Relief was the first feeling. I suddenly felt validated. I felt seen, I felt like my struggles had a name. Then came a whole heap of other complicated emotions.

My Autism diagnosis was made on Monday of this week (25th January, 2021). Again relief, but also now I know why things happen and I know what to do to resolve stuff. I’ve been researching Autism for a short time, but understanding and living with this condition is so much easier now I KNOW why I am feeling things suddenly.

To give an example of ADHD and Autism in real life this situation occurred this week.

I had plans to go to the dentist – for a routine clean. I believed my wife was doing other tasks during my appointment and then we would be going straight home. Thanks to my ADHD inattentiveness I didn’t hear her tell me we needed to go several places afterwards. She told me when I got back in the car we needed to go to several more places. Instantly anxiety filled me, I started needing to stim, I thought the plan was to go straight home and now we were going places and I was just filled with anxiety. Then I remembered that this is a symptom of Autism – as described here. I then knew that I needed to indulge my stimming behaviour to release anxiety… AND IT WORKED. No lorazepam (anti-anxiety medication) needed. When I can explain the cause of my feelings it allows me counter the massive emotional dysregulation that comes with both ADHD and Autism.


Anyway – if you really want to help people with Autism.

Protest Sia’s ableist movie ‘Music’ – deplatform it by contacting platforms to say you don’t like the glorification of massively inaccurate and harmful portrayals of stereotyped Autism. Also it includes promoting a technique of restraint that has got people killed, and is causing significant amounts of trauma in those who have survived being restrained. This movie will do immeasurable harm to the Autism community and it shouldn’t be given the light of day.

Here’s an article on it:
https://www.bitchmedia.org/article/sia-film-music-ableism-autistic-representation-film

Adult ADHD/Autism Advocacy in New Zealand – Things Must Change

Advocacy – What it means to me?


Advocacy can simply be defined as activities by an individual which aims to influence decisions within political, economic, and social institutions. Advocacy includes activities and publications to influence public policy, laws and budgets by using facts, their relationships, the media, and messaging to educate government officials and the public. Advocacy can include many activities that a person or organization undertakes including media campaigns, public speaking, commissioning and publishing research.

For me this means – I am going to be far more active in all of these spaces this year trying to raise awareness, support, funding and will be meeting with prominent politicians to try and lift the living conditions of people who live with either Attention Deficit Hyperactivity Disorder or Autism. I will have a particular focus on raising the issues around those who are currently being left out of the conversation – specifically most adults with these conditions, a large number of which are women due to originally bad science leading to under diagnosis, as well as making sure that those communities without the means to access are prioritised – in this case Māori, Pasifika, Asian, and other BIPOC communities must be prioritised for care – as these are the people who are not being shown in what little data we have on ADHD in New Zealand.

I am going to focus this article on my ADHD because I am still very much educating myself on Autism – this will be a blog for another time.

Who am I?


My name is Rory McCarthy. I have been diagnosed with ADHD since 2013. I was initially diagnosed generalized anxiety disorder, and intermittent and sometimes intense depression. Last year after receiving critical mental health support, my psychologist told me that I likely had Autism also. This diagnosis was confirmed in January of 2021.

My ADHD diagnosis story


At all points during my life – I have struggled. I was a relatively good student. I achieved high grades in certain areas – and I had intense passions, I hyper-fixated on things that were not neurotypical hobbies like other kids. I had problems maintaining friendships. I was a creative child who loved Drama class and school plays were the area where I shone most, and was most allowed to be my authentic self.

I was also bullied consistently, and not just by kids. The worst abuse I have suffered in my life has come from adults or authority figures in my life. I believe that this was all due to a fundamental lack of understanding about ADHD.

By the time I was 15 in high school, the constant negative feedback that ADHD children receive (especially those who are undiagnosed) started to catch up with me. I started becoming depressed. Anecdotally this is where a lot of other ADHD people I know have broken within the neurotypical education system.

The reason for this breakdown – I believed the following things about myself – “I am lazy, stupid, or crazy”. This is something that had been reinforced to me by my teachers, and other adults, as well as in peer relationships. Research done by Dr. William Dodson has theorised a new condition that is not officially recognised that presents in children and adults with ADHD known as Rejection Sensitive Dysphoria (RSD) – or severe emotional pain and overreaction to critique. The sad reason for the development of this condition is that ADHD researchers estimate that by age 12, children with ADHD get 20,000 more negative messages about themselves than other kids their age. All that criticism can take a real toll on their self-esteem.

The best selling ADHD self help book has the title “You Mean I’m Not Lazy Stupid or Crazy?!”

I went straight to university at 17, by the time I turned 18, I had dropped out and started dealing with one of the most difficult problems – drug addiction. I was still working fulltime at a Starbucks but a large portion of my week was spent engaging with and taking drugs. During this time I discovered that amphetamines (incl. meth amphetamine) had a different effect on me than other people. Instead of whatever high they got, I could focus. Some of the users I took drugs with said that I might have ADHD because of this. This was the first time I had considered that I was not neurotypical but I did nothing about it.

A few years passed. I kept struggling in every job I ever had, performance meetings to discuss issues around productivity were common, but another side effect of ADHD is justice sensitivity – we cannot sit by when we see perceived injustice occurring. This might seem like a nice quality to have, and it is when that justice work is targeted correctly. But we also have high standards, and neurotypical workplaces have made me commit light fraud, as well as engage in bullying practices – this incongruity combined with our need for justice has caused me to speak out in a lot of circumstances. Anyone who whistle-blows on bad business practice can tell you – it always ends poorly for the whistleblower – this happened to me in two jobs, one in New Zealand and one in Australia. I was forced out after speaking up.

When I was 26 I returned to University to pursue a law degree, but due to complications of Crohn’s disease I was unable to progress my first year and had to resit the entire year. I decided to do psychology papers at university. During this time I learned about ADHD, but the science in 2009 still said overwhelmingly that ADHD was a childhood condition, and that adults didn’t suffer from it. So I delayed getting a diagnosis even though I knew that sounded like me. I had also started masking my ADHD symptoms with anxiety responses – I was always late to appointments – so now I showed up 30 minutes early anywhere and had to wait around for a socially acceptable arriving time. Due to this masking, it made me believe that I had ADHD less.

Then I kept struggling to focus on papers that I was interested in, my GPA was still high (Average A-). I tried to get a diagnosis through the public healthcare system.

I was referred to the Public Mental Health service psychiatrist. During my appointment – because I had an existing diagnosis of depression – the psychiatrist would not even discuss the possibility that I had ADHD. I was put on Venlafaxine – a drug which ended up almost killing me as it gave me full central nervous system body shivers for approximately one month. I believed that I must not have ADHD because they wouldn’t help. This was in 2010.

I had returned to tertiary education again – this time to get a Bachelor of Software Engineering (I completed this qualification, a diploma in Film and TV, and I have 2.5 years of Psychology, Criminology and Sociology papers towards a Bachelor of Arts that I cannot bring myself to finish in rigourous academia).

I started struggling again – by 2013 – research into adult ADHD had become more prominent, I knew that for certain I had this condition. I booked an appointment with the only ADHD specialist I could find. I did a comprehensive background check including school reports, a TOVA test, and talked at length with the diagnosing physician. They diagnosed me as ADHD-C and I was to start Ritalin.

I wasn’t offered counselling, this particular no longer practicing doctor instead provided me with a pamphlet on the Christian faith and it’s value in treating ADHD (I had long since left Christianity – a story for another time maybe).

After getting a diagnosis for ADHD in October of 2013, three years after being rejected by the public system and struggling, I still believed that the medication was to the only way to reduce the symptoms of ADHD. I had read books on ADHD, but none of them were helpful. The medication (methylphenidate) did not work for me correctly I would find. It had extremely inconsistent results, and it was more likely I was still untreated here but hyperfocus on areas I loved had meant that I thrived.

In 2019 I realise that my medication isnt working this is after spending the last 6 years trying to get the prescription right – cycling through the different brand names of the drug and trying to get the correct dosages.

I booked back into a new psychiatrist as mine had retired at this point. He prescribed dexamphetamine. It was completely different. I could focus, I wasn’t anxious and my heart was not beating out of my chest all the time. I could sleep easier than when on methylphenidate.

More to this though, now that my diagnosis had been confirmed by a second psychiatrist – I finally felt validated in my diagnosis. I started to self-identify as an ADHD person. I started to engage with the online Twitter community.

ADHD Twitter changed my life.


Suddenly all the struggles I had in my life were being Tweet out, drawn in comics, discussed in articles written by people with the condition. For the first time in my life I felt a) less alone, and b) more educated than ever.

The point I am trying to make with this is that ADHD care is awful, especially for adults – there’s no access to public services generally, and those that are accessible are very limited. I have learned more about ADHD on Twitter than all my past experiences in the entire medical health system – this is gross negligence on the part of our Health System.

On top of that decades bad research has contributed to false information around the condition, and unless doctors stay current – they will be trying to diagnose patients for the condition based on outdated and sexist criteria that lead doctors to believe the condition is less likely in women for example (this has now been disproven by recent research studies – and the presentation of ADHD in women is vastly different – a planned blog for another time).

Some amazing Twitter accounts to follow listed below – the women listed here have explained more to me about my condition and management than anyone else – and a special mention for René Brooks(@blkgirllostkeys) specifically – she has been an amazing source of information and personally communicative to help me on this journey:

Pinahttps://twitter.com/ADHD_Alien – an ADHD comic artist – be sure to check out the pinned Tweet of all Pina’s ADHD comics – great for parents, kids, teachers, anyone as an entry point.
René Brookshttps://twitter.com/blkgirllostkeys – an ADHD author, advocate and also runs her own store that sells great products for people with ADHD.
Jessica McCabe https://twitter.com/HowtoADHD – a vlogger who creates amazing content on ADHD – and how to manage it in every day life.
Dani Donovanhttps://twitter.com/danidonovan – an ADHD comic creator focusing on acceptance and understanding of ADHD, also a prominent ADHD TikTok personality.
Shirahttps://twitter.com/shiraisinspired – a more recent addition who constantly makes super relevant and personally relatable content and Tweets about just day to day ADHD life. A very funny person.

This really has to change – Social media shouldn’t know more than Doctors


The general public still have outdated ideas about what someone with ADHD looks like – generally the hyperactive boy trope. This has been reinforced with terrible non-lived experience actors playing the roles of people with ADHD and giving a farcical representation that demeans and insults us.

The attitudes and stigma toward ADHD are harmful. They prevent people from seeking a diagnosis, contribute to more rejection, and leave people with the condition feeling unaccepted or unworthy. Self esteem problems are a major issue with adult ADHD as living with the condition undiagnosed wreaks havoc on ALL aspects of your life.

Yeah but what are you random Twitter user, and single person going to do about it?


I had considered going back to university. There are extensive gaps in knowledge, and misconceptions that need to be challenged. I believe that the academic institute has been contributing significant harm to ADHD. There have been more recent studies done that show we need to be included at every phase of research design, but my preference personally would be to only have the research undertaken by someone neurodiverse or for a neurodiverse person to be included on the team. Especially if making comments about us. The callous indifference with which neurotypical researchers treat us in their studies shines through, and faulty methodology seems to encourage the propagation of more bad science.

I have instead decided to step up and just do the work I would do at university outside of the formal structure. Going back to university would damage my health. It’s not that I do not respect the merits of going to university, just that academia is an inherently ableist and exclusionary discipline that only seeks to serve and uphold it’s white supremacist patriarchal structure.

I have already started one of these initiatives collecting data on Adult ADHD experiences within New Zealand public healthcare.

I am also training to be an ADHD Coach through the International Coaching Federation. That course starts in March and finishes in October, at the end I will be one of New Zealand’s only Internationally Certified ADHD Coaches. A shocking fact. If you would like to support me through my education to do this – please consider donating to my givealittle: https://givealittle.co.nz/cause/help-rory-become-an-internationally-certified-adhd

On top of this, I will be engaging with our health minister – Andrew Little – as well as the mental health spokesperson in the Greens party – Chlöe Swarbrick – to get more traction and awareness raised.

One dinosaur saying to another

Mental health is political
Mental Health Is Political (Source: https://twitter.com/dinoman_j)

At almost every age ADHD and Autistic people are being discriminated against on a regular basis. The time for stigma and shame around this condition to end is now. Now we move to loving acceptance and education.

Ngā mihi nui,

Rory McCarthy (Independent ADHD/Autism Advocate, Researcher, and ADHD Coach in training(soon)).

There is no excuse for white privilege (and racism) in the post-BLM world


White Privilege

It’s beyond time for white people to acknowledge their privilege, the white supremacist society we live, and to start doing the work to dismantle it. In every measurable outcome that involves Māori, Pasifika, Black, BIPOC, and Asian people – we have been perpetuating a culture that actively harms these groups.

They are paid less, over policed, get less access to medical care, are trapped in poverty, and are criminalised by our justice system at far higher rates than the white population just to name a few areas that we are failing. However, if we look it’s easy to see systemic deficits in all facets of our society.

To be unaware of race issues and actively not campaigning against them makes you complicit in a system of racism, it’s not enough to know of race issues – you cannot claim not to see race – this in itself is an act of racism.

As world renowned scholar, activist, and organizer Angela Y. Davis wrote:

“In a racist society, it is not enough to be non-racist, we must be anti-racist.”

Angela Y. Davis

None of this is new information. Moana Jackson published the He Whaipaanga Hou (Māori and the Criminal Justice System – A New Perspective) report in 1987. In this report which is extremely detailed, he shows how our justice system is broken, racist and provided a comprehensive look at how we could potentially reform it to undo colonial structures of imprisonment.

Despite repeated claims and initiatives – our prison system is nearly exactly the same with the same issues and the recent riot at Waikeria prison was a direct result of not doing the work to actually fix the problems that were identified in 1987.

For an indepth look at the issues of the prison riot and the conditions and circumstances that lead to the uprising – I recommend this excellent article by Emilie Rākete – We warned Kelvin Davis about the Waikeria uprising.

I am a prison abolitionist, I have come to this view after spending time researching Criminology at University and I would recommend this book ‘Human Rights and Incarceration – Critical Perspectives’ if you would like to understand more of the issues around incarceration with a specific focus on the New Zealand prison system.

What I am trying to say with this example – is that nothing has substantively changed for a lot of outcomes since 1987 – and we still keep making excuses as to why rather than doing the work.


The BLM movement was at it’s peak last year – why are you discussing it now?

There are far better people than I (a white privileged male with no lived experience of racism) whom discussed these topics at the time – I will provide resources at the end for Aotearoa and non-Aotearoa specific texts on this movement.

The reason I am talking about this is because the start of this year (less than 3 weeks into 2021) I have seen some acts of racism in Aotearoa that I would like to discuss – and I have seen some responses that highlight how much work we as white people need to do in order to actually make progress. I am going to highlight some pretty egregious stuff that has happened – and I will avoid naming specific individuals where possible.


Twitter Interactions – Racism Online

If you are on NZ political left Twitter you may know of this recent display of outright racism. A well known immigrant activist was holding an ex-PM to account for their racism and then when asked consistently to do the work for the ex-PM, made a comment that if they were really interested they should be paid for their time.

What happened next was atrocious. Two white young left wing Twitter users launched an attack on the immigrant activist – using pejorative terms to describe their activism as “performative” and saying that they “hate that guy” (which also was an act of gender discrimination as the person has they/them pronouns) – with no obvious reason to do so. The activist in question is anything other than performative, having made significant movement on extremely important legislation within the LGBTQIA+ community.

The response was quick from the person targeted, other BIPOC, Māori, and Pasifika people as well as White allies. They spoke out against these people – and many of their responses were deemed as “piling on”.

Firstly, this is wrong, unfortunately if you put something out into the world that is bigoted, racist, transphobic, misogynistic or otherwise – the backlash you receive for doing this is you being held accountable – how vengeful or upset you deem these people to be is not something you get to decide – the marginalised group who has been harmed is allowed to react however they want (excluding threats of violence).

Secondly, there were two different responses. One of which was nearly correct but still relied on excusing the person from the resulting backlash – unfortunately there’s no defense for retribution here. You have to accept the consequences of your actions – if you have fucked up, in the age of Twitter, you are going to be criticised heavily due to the nature of social media.

The other response, was to take no responsibility for their personal failings, go private on Twitter indefinitely and to have their family member restart with racist attacks days later because their family member perceived unfair harm on their part for their actions. This is absolutely the worst way to respond to accusations of racism.

“I didn’t know I was dressing as a white supremacist insurrectionist”

At the America’s Cup boat race – a real estate agent (shocking…) named Ollie Wall decided that it would be a good idea for him to support the American Magic boat race team by dressing up as a white nationalist insurrectionist. Here’s a now hidden Instagram photo:

Image
Oliver Wall groping the breast of an unknown person during the America’s cup boat race. Source: Ollie Wall’s IG.

Again – the backlash for doing this was swift. He’s been criticised, his family have been called and he claims that people have threatened him with molotov cocktails (this last part isn’t ok). Ollie got right of reply to discuss these issues with the NZ Herald the article is here. I want to highlight his “apology” and his reasoning and to show that these are unacceptable given the age we live in and the work that White people have to do to dismantle racism.

First here’s his “apology”

I am truly sorry for any offence caused by my silly outfit choice. A friend had the good idea of supporting the teams who have made a huge effort to be here and unfortunately had very little support on the water for obvious reasons. We were asked to dress up ‘USA’ for Saturday’s races to show American Magic support. My intention was to poke fun at the QAnon character and have a laugh at his utter ridiculousness. However, I ignorantly had no idea at the time the significance and depths of that person’s ideology and evilness.

Ollie Wall

This isn’t an apology. It’s a list of excuses. The first line says he’s sorry for “offence caused”. He’s sorry for the results of his action, but excuses himself from being accountable for the action. An apology without personal accountability, reflection, and reasonable action taken to undo the harm isn’t an apology. He’s learned absolutely nothing from this experience – and believes he was just wearing “a silly costume”.

The person whom he is portraying participated in a violent insurrection on the US Capitol that has left six people dead (including two Capitol police – one through suicide days later, the other from brutal beating with a fire extinguisher). He claims not to have known anything about the ideology of the person involved – and yet at the top of the IG post he used the words “Storm the Capitol”.

GET FUCKED.

There’s no way you could duplicate the level of accuracy without sourcing multiple photos, and all of the sources of these photos would have discussed his violent ideology as well as just being in the fucking Capitol in an insurrection. Trump’s movement has always stood for one thing – WHITE SUPREMACY.

The casual groping of the breast in the above photo screams misogynistic asshole to me also. He’s not sorry and he’s yet to be held accountable for his actions. Ignorance for racism is unacceptable – people who are victims of racism do not get a choice about racial discourse – and White people should not be given a free pass.


I’ve been accused of racism – how should I react then?

I think the best advice I’ve seen is from Brené Brown. When you are faced with criticism – your instant response will be shame – how you respond to that shame will dictate whether you have learned from this interaction.

Firstly when you feel shame – “don’t text, talk, or type”. In these moments of shame when you’ve been held accountable for something wrong you have done – you will not be thinking clearly – your body will be undergoing a stress response, and you will act defensively. Your first instinct will be to excuse your actions by explaining them, and to start going through a process of “armoring up” to protect yourself.

The correct response to someone who has accused you of racism is to say – “I am sorry I was racist, I will research in my own time and reflect on my actions, thank you for educating me”. It’s very important for White people not to ask why something is racist of those who accuse you, unless you have a personal relationship where this has been agreed on. No victim of racism should have to explain your racism to you.

What you need to do here is to turn your actions from a shame response into a guilt one – the difference between shame and guilt is described by Brown like this – Shame is the belief that you are a bad person. It’s an unhelpful emotion that causes us to armor up, and it isolates us from others. Guilt is the act of believing that we have done a bad action, but that we mean to be good – guilt allows growth – shame does not. (I recommend all people listen to Brown’s podcast series ‘Unlocking Us‘ – she’s a social researcher with over 20 years experience dealing with emotions such as embarrassment, shame and guilt – who has done some incredible work on mechanisms and actions involved with these emotions).

Redemption for your actions

The only way to truly redeem yourself for committing a horrible act is to make sure you take responsibility, are accountable, and educated enough not to make mistakes in the future.

Similarly – people who make genuine efforts to apologise and do better must be allowed the chance to prove themselves. That doesn’t mean forgiving their actions, but understanding that people make mistakes – even good people (in fact the best people I know constantly make mistakes) – but their response to making mistakes is what separates them from other people.

As a white person who grew up in a racist environment – you are going to constantly fail even with the best of intentions – Brown has been doing anti-racist work for 15 years and still needs to be corrected.

What we must do learn to do as White people is to lean into the discomfort. You will experience cognitive dissonance when your actions do not align with your beliefs – but listening, educating and correcting based on the feedback from others has never been something I regret – even if I felt awful.

Further Reading

Anti-racist reading list compiled by Ibram X. Kendi – https://chipublib.bibliocommons.com/list/share/204842963/1357692923

Aotearoa specific anti-racist reading list compiled by Jacinta Ruru, Angela Wanhalla & Jeanette Wikaira – https://thespinoff.co.nz/atea/15-06-2020/read-our-words-an-anti-racist-reading-list-for-new-zealanders/

Brené Brown’s podcast series Unlocking Us – https://brenebrown.com/podcast/introducing-unlocking-us/

A specific episode of Brené Brown’s podcast relevant to this post – https://brenebrown.com/transcript/brene-on-shame-and-accountability/

We must become a truly empathetic society

This blog will be less structured than I usually try to make things, I’m trying to show you connections I see that are apparent to my brain and how I think with ADHD. More a ramblings and thoughts of the past 24 hours stolen unashamedly from David Slack who I would recommend subscribing to, free samples of his work are available to see if it is your thing.

The Press Leaders Debate

Fundamental issues with Leaders Debates

I’m writing this blog after The Press Leaders debate in Christchurch between Jacinda Ardern and Judith Collins. A debate that included only the two front runners in our democracy, the binary choice we’re constantly told we have to make between our two major parties. We’ve had our Mixed Member Proportional (MMP) system of government for a long time now (since 1996) but our media is still trapped in a First Past the Post competition.

There’s a lot of issues with this, for one, since it’s inception – no party in government has ever been able to govern alone. That means that yes, other voices will influence those two present on stage. If debates are all they are hyped up to be as one of the key features of our western democracy, why are we still ignoring our MMP system of government?

Realistic contenders for coalition partners with these parties should be invited. And definitely all those parties who have been in government/or are in government should be present at the Leader’s debates. We have nearly a two party system reliant on a few % points to keep the other two viable parties in our government. MMP won’t have failed, the media and us in our complicity will have failed MMP.

The Actual Debate

Firstly the debate can be viewed here.

I’ll admit I don’t watch debates. I am someone who shys at times from conflict. Watching things I know will give me obvious discomfort, not to mention the reading of body language I constantly am attuned to, makes these debates incredibly hard to watch.

There were no winners in this debate, Ardern may have made better points, carried herself with conviction, and spoke eloquently about issues, but the very nature of the debate made it a loser for all involved. The press, the candidates, and most of all, we as voters and viewers.

You might have gleaned a small amount of new information, we know what Ardern and Collins drive for cars, but this debate would have had a minimal effect on the outcome of the election. It will have hardened the ideological division and thought patterns that you ascribe to National and Labour voters, it would have lowered empathy, and it would have given rise to a far more toxic trait that is eroding our social fabric.

It’s time to discuss contemptuousness

There’s a way of treating people currently in society, that is prevalent on an international level. Something born out of an old way of thinking, and that pervades and persists across the political divide, in workplaces, cultures, families, and even individuals. It’s responsible for all of us not being able to see how close we are to each other, and it’s something that I am guilty of at times, and I am guessing if you’re brave enough to take an honest moral inventory of yourself, you could think of examples where you’ve acted in this way.

In a 2016 study published in the Journal of Personality and Social Psychology, the researchers sought to understand a new trait of personality – contemptuousness. There are some for who this is the dominant trait The study can be found (freely accessible) here – Dispositional Contempt: A First Look at the Contemptuous Person.

Here’s a relevant pullquote from the findings of their paper:

Dispositional contempt was distinguished from tendencies toward related emotions and was most associated with dispositional envy, anger, and hubristic pride. Somewhat paradoxically, dispositional contempt was related to being cold and “superior,” with associations found with narcissism, other-oriented perfectionism, and various antisocial tendencies (e.g., Disagreeableness, Machiavellianism, racism), but was also related to being self-deprecating and emotionally fragile, with associations found with low self-esteem, insecure attachment, and feeling that others impose perfectionistic standards on oneself.

Dispositional Contempt: A First Look at the Contemptuous Person

I think if we use two current examples from leadership in the world today, we can find almost text book examples.

Trump looking smug and disconnected
The Poster Child for Contemptuousness

Donald J Trump is a deeply sick man. Not just due to his recent contracting of COVID-19. But because he represents contemptuousness left unchecked, and as a result everyone on Earth is suffering because of it. Those in the US are more at very real threat to their immediate safety, but his rolling back of climate protections and ramping up of fossil fuel infrastructure is setting us on a course for global annihilation due to climate change.

Anand Giridharadas (@AnandWrites) is an excellent author who wrote this amazing piece on the certain strain of toxicity that is currently plaguing American society. Men especially, I’d advise you to read and engage with what he is saying, especially if you think you’re a “man’s man”. There seems to be surface level indications as he states with polling numbers that we are coming to completely abhor this disposition in people, which brings me to my second example.

We need to talk about Judith Collins

Judith Collins is a highly problematic politician, leader, and communicator. Judith Collins is also a very contemptuous person. Stealing a little from Giridharadas’ article – “she’s a weak person who has always longed to be a strong one, and a weak person’s idea of a strong one.” (Paraphrased and Gender changed).

The one trait that media reminds us of with Collins is her “toughness”. The words “tough” and “aggressive” are commonly associated with her, in the press, and even in the public. This persona is a mirage, instead Collins is contemptuous.

There’s a specific emotion and facial expression that I implicitly associate with the trait of contemptuous people – sneering. Nothing good has ever come out of sneering at someone, it’s a human expression that denies empathy – and shows a complete disregard for peoples humanity.

It was noted by Russell Brown on Twitter that Judith Collins reminded him so much of Robert Muldoon, a past leader with a very aggressive contemptuous nature, and style of leadership that was authoritarian. Muldoon as Prime Minister even broke New Zealand law to cancel our superannuation scheme. (Details here).

Judith reminds me a lot of Muldoon, and that’s an awful thing, he was a terrible prime minister. His greatest achievement in my mind was getting drunk to call a snap election. Then @resurrecti0nman linked this photo:

There was a moment during the debate where one of the Stuff photographers (Joe Johnson) captured this image (a somewhat fitting photo given her disdain for photography):

A snarling picture of Judith
Judith acting with contempt

Judith Collins is a bully, a serial liar or prone to misrepresenting of the truth, and has no self-awareness or unemotional response to valid criticism. She perceives attacks on her as holding her to a perfect standard that others are not held to, when her flaws are sometimes so large and potentially damaging to society such as her cronyism with her Orivida. This attitude might have come from an environment where she saw constant valid criticism of a Prime Minister in John Key get left alone. When she was held to account for her actions in Dirty Politics, he avoided this using his “many hats” and “I don’t recall” persona to deflect along with a complicit press.

She is in a word – contemptuous. Will accuse others of constantly being weak – despite these people showing bravery in their capacity to show vulnerability, and at the same time completely unable to see or admit that she has vulnerability. This causes a massive disconnect, and the inconsistency here is why she’s a highly unlikeable candidate.

Signs of Hope in Aotearoa

When Judith Collins was elected I was nervous. Campaigns for people who should never hold the highest office due to their contemptuous nature had gained a lot of traction overseas. Donald Trump came to power by embodying this attitude. A victory for a fascist dictator who has gone on to kill over 210,000 of his own citizens through manslaughter due to his absolute botched response to the COVID-19 virus. He also provides a starting point for 38% of the English language misinformation around COVID-19 – contributing to countless deaths overseas. He’s objectively a bad person.

Collins embodies a lot of his campaigning style – she uses dog whistling language, has cosied up to religion, engaged in racially divisive language against Māori especially in regards to Ihumātao. These aren’t signs of a good leader, they are signs of someone who thinks that their way is right, and that they are morally, intellectually, and generally superior to all others. This attitude is flawed in nearly every way. The good news is – Collins is polling terribly, doing worse than the two rapid fire predecessors in nearly every poll. People of Aotearoa are rejecting the language of divisiveness from their leader.

Reflections on Left Wing Contemptuousness

I’d love to say that this is a partisan issue, but it’s not. We all need to stop treating each other with contempt. Everyday on Twitter I see microaggressive behaviours from across the political spectrum. Based on my personal analytics of my own Twitter feed, people respond far better to positively framed information, than they do on snide attacks on a rival party or position. Jacinda embraces a positive approach (while allowing her ministers to perform the necessary attacks to highlight the negative part of their campaign).

That’s not to say negative criticism has no place, indeed sometimes there can be acceptable or understandable contempt of a person. Tone policing can be highly problematic. When Donald J Trump was confirmed to be infected, my reaction was good, this man has caused an irreparable amount of harm to his country, and international relations. He’s undermined the very fabric of society. I wish him to suffer the consequences of his actions, and I also believe in compassion for all human beings. These are two opposing views I am comfortable to hold in my own head.

For me this is a morally correct position – I am a practicing Stoic and one of the main Stoic philosophers had this quote:

He who spares the wicked injures the good.

Seneca

Sometimes the greater harm is to allow evil men to continue. I know you all want a humiliating defeat of Trump in the election, and you have concerns about whether his death would be a good or bad thing for the US. I wish I had the view that this didn’t end in violence, but I see no paths left – no matter the outcome. 33% of Americans now believe political violence is ok, and we’re talking about a populace with the most guns per capita in the world. All safeguards against this have failed, and with the ramifications of a stacked court, peaceful resolution seems incredibly unlikely to me. Not having a unifying figure that the soldiers of contemptuousness have in Trump will still have a destabilising effect on their ability to organise.

I also think my view has best been framed by one of my favourite feminists – Mona Eltahawy in her Editorial: FEMINIST GIANT Does Not Wish Donald Trump Well.

The opposite of contempt – empathy

The way to counter what we are seeing is to walk a mile in that persons shoes. This is something I am still really bad at, I may seem like an empathetic person from the outside but I still react in a defensive and non-constructive manner when presented with criticism – this is partially due to Rejection Sensitive Dysphoria a byproduct of ADHD. I want to be better than I am at responding to feedback in this way – and I have just been provided a great way of doing that from someone who recently offered some criticism. An excellent article that I think we all need to read about how to do empathy correctly. Own, Apologize, Repair: Coming Back to Integrity.

It’s often hard for me to frame things without centering myself, and I do this constantly as a way to relate to people (often giving them the impression I only care about myself, or that I have failed to understand their position) – when I relate my personal experiences it’s to try and show I am listening, and that I somewhat understand.

End thoughts

A few last things to mention. Judith Collins has shown empathy before, she’s defended Golriz Ghahraman on Twitter on a few occasions, and I believe she is capable of change. I also believe that she’s been given the worst job possible, and is way in over her head. I am not sure that her positions these times are authentic, because of the current displays of patterns of behaviour.

I often think of the environment in the National party, and given National’s propensity to attack anyone they have contempt for, constantly punching down on members of society in vulnerable positions. This has included airing negative views about people publicly in their own party, they create a perfect environment for incapable leadership, and promote a damaging mental health environment. They are all byproducts of toxicity, and a toxic institution must be rebuilt from the ground up, with a set of core values.

Empathy must be at societies core, because contempt never made anyone happier, and the results of a truly contemptuous leadership can have dire consequences for everyone.

Beat Saber is Revolutionary

I don’t know if you’ve ever heard of Beat Saber, but I want to talk to you about it in a way that makes you understand it’s not just a game. It’s actually pretty responsible for increasing my self esteem, fixing health issues that I had, and it has given me a sense of self that exists that I am trying to work toward.

How I Discovered Beat Saber

My main passion in the games industry (since only recently) is Virtual Reality (VR) Gaming. I have a lot of ideas about what to make, and I am probably considered a senior VR programmer at this point. I have worked in Mobile/PC VR gaming, and I have a pretty extensive knowledge of how to make people feel ok using VR from a programming and efficiency perspective. I have worked on 3 now published titles.

I was also what you would call a VR skeptic. I think the tech is revolutionary. I think it could have massive implications for fields it’s not really had much work in yet especially education. I thought VR tech needed years more work before it could provide us with any insight into it’s efficiency, or to even be worthwhile for purchase.

When I moved into independent development, my intention was to start working on a story based VR fishing game, that explores themes around parental aging, Alzheimer’s disease, and loss of habitat and extinction in nature. Unfortunately I can’t actually code at the moment due to PTSD from an experience I had in my life.

I got a high end VR headset, I got all the “Triple-A” budget titles which are cool experiences but make VR feel clunky and unresponsive a lot of the time (the notable exception is Valve’s Half-Life Alyx – which is a master showcase of the potential of VR).

I had seen Beat Saber videos in the past, usually popular streamers, but I was awful at Guitar Hero, and this game basically looked like Guitar Hero and Fruit Ninja crossed together. I didn’t think it would be for me, I am clumsy and uncoordinated in real life – I have never been good at sports. Then in December of 2019, I saw a video on Twitter of someone who is now one of my favourite streamers – Naysy (will promo all her links at the bottom – she deserves the support).

Someone had custom mapped Christmas Songs – Naysy is an amazing player, and her costume game is always amazing.

I thought that looked really cool, and the concept of light sabers slashing through blocks sounded awesome. I purchased the game.


Unintended Amazing Consequences

I have never really been fit in my life. Exercise is something I hate, I find the gym super boring, I find running super boring, I can’t play sports because I am bad at them. I have made many attempts to keep schedules so that I be “healthy”. I tried really hard to be awesome at these things. I think the longest I’ve kept up any of these habits would be about a month.

Beat Saber changed me completely. I don’t mean in some small superficial way, it actually changed my life completely. When I got the game, the first few sessions I was like “this is cool”. Then roughly 30 minutes later I was lamenting the pain that I felt. I didn’t realise it, but I had actually being doing high-intensity interval training (HIIT) exercising. Better than this though, I had no idea I was even doing exercise. I would be exhausted.

I played through the main base game, but I found the game quite boring, and that’s because the base game is limited to a handful of songs (you can expand with Downloadable Content Pack expansions for some artists too). These are good and I generally buy them to support the developer (but have a lot of ethical dilemmas around who now owns BeatGames – Facebook).

The joy of this game comes from custom mapping. The Beat Saber Modding Group is a community that regularly “maps” songs into note combinations, and the catalogue is always growing. You can load these songs onto the PC VR or Oculus Stand-Alone headsets, unfortunately PSVR has no way to do this (Sorry dimsie).

I got custom songs… then something incredible started happening. I was burning over 1000 calories a day just playing the game for ~roughly two hours. I’m going to show you some of my measured progress (I received a smart watch as a wedding present from my wife).


Hello healthy BMI* range, goodbye fat mass

* BMI is not a perfect measurement, there are a lot of problems, I don’t agree with a lot of the science here but it’s good as a comparative scale.

I got super addicted to this game, I also am a tech geek in a lot of respects, I have a lot of stuff I like to use because it provides me with data so I can see progress, more easily than just looking at myself.

Here’s my weight and fat mass in kilograms.

A set of two graphs that show a rapid decline. 
One measures weight in kilograms showing a measurement on December 3rd of 84.3 kg,
The other shows fat mass with a measurement of 20.7kg
Both are well out of the "healthy" range.
Top Graph: Current Weight
Bottom Graph: Current Fat Mass

And here’s my weight and fat mass approximately four months later.

A set of two graphs that show a rapid decline. Measurements shown on December 3rd.
One measures weight in kilograms showing a measurement on December 3rd of 84.3 kg,
The other shows fat mass with a measurement of 20.7kg
Both are well out of the "healthy" range.
Top Graph: Current Weight
Bottom Graph: Current Fat Mass

That’s right. In 16 weeks and 1 day I had gone from being 84.3 kilograms down to 69.4 (A total loss of 14.9 kilos). I had not changed my diet, I had not changed the amount of “exercise” I was doing. I had just played Beat Saber, got addicted and played more and more.

How those calories were burned!

Luckily I can show you calories burned too. There’s an app called Yur.fit that allows for Calorie Expenditure Tracking. Here’s the month’s of January, February and March:


A day by day calories burned chart showing a total adding up to 21500 for January
Total Calories Burned in VR in January – ~21500 Calories

A day by day calories burned chart showing a total adding up to 15900 for February
Total Calories Burned in February – ~15900 Calories

A day by day calories burned chart showing a total adding up to 47000 for March
Total Calories Burned in March – ~47000 Calories

So… I need to explain a few things here, you’ll notice that at the end of January and in February I have some weird holes. My headsets that I was using broke, they broke due to sweat damage. At the time I was using HTC Vive hardware with the wireless adapter. The tracking is considerably better than other headsets, but their headset build quality is awful. I don’t use their hardware anymore – even with militant wiping down and cleaning the headset – when you sweat inside the head set it generates passive moisture that would seep in and erode sensors to the point it no longer worked. I’ll list recommended hardware further down.

In March I burn more calories than in the other two months. That is because on top of switching hardware, I had begun thinking of streaming and trying to increase in rank in the main Beat Saber scoring system. This meant I had a more consistent schedule of play, and I also was pushing myself insanely hard. Some weekends and days I would play for up to 6 hours.

I was attending University at this stage, and my intention was to actually do a Masters thesis on Beat Saber. I wanted to see if it could be used for other people like me who are resistant or non-responsive to traditional forms of exercise. My thesis question was going to be around this, then COVID-19 hit – due to being high-risk due to Asthma and Crohn’s Disease – on medical advice I dropped out.

Maybe I can monetise this? (Thanks Capitalism)

This meant I started looking into how to turn Beat Saber into a job. I started a YouTube Channel, and was posting (nearly) daily videos to TikTok. I wanted to do this full time. I started streaming on Twitch. I am not a very personable person when streaming because it’s so unnatural to me (and I have body dysmorphia and also hate my voice), despite this I hit affiliate really quickly and had some subscribes.

Then I started seeing Jeff Bezos earning billions every day and I was talking to people in the USA who were in horrible circumstances. Due to being highly sensitive I attune myself to others pain, and there was a lot.

This started to grind against my personal code of ethics – I don’t want to give money to billionaires if I can avoid it, and talking to people in countries that had not controlled the virus started giving me massive survivor guilt, making me unable to connect with my audience. The worst effect I didn’t really realise until months later is that this actually killed a lot of my love of the game.

Then the June 2020 streamer and gaming personality #metoo moment happened. A number of popular streamers on the platform had sexually assaulted or harassed women at events, or in real life. They were outed, and Twitch made some small efforts to remove these toxic abusers. But this was the final straw for me ethically, I could no longer reconcile my strong ethical beliefs with a platform that turns a constant blind eye to the objectification, abuse and sexual harassment of women, as well as splitting everything I earned 50/50 with the worlds richest man.

I deleted my Twitch, took all my YouTube videos offline, deleted my streamer Twitter, and left my TikTok videos up, but never used the app anymore. Exploring this as a career option killed a lot of interest I had in the game. I have only recently begun appreciating it for the fun and not the slog of a job in recent months. (I underwent a number of mental health crises in this time due to external unrelated issues which hasn’t helped).

Post-Monetisation – Advice to others!

I basically am an evangelist for Beat Saber. I love this game, everyone I’ve ever shown it to has fallen in love with it. The concept is so simple, cut a block in time to music, dodge walls, and avoid bombs. I think it’s the perfect game, and the best game made in my life of video gaming. I can’t really do the description of why it’s awesome justice as well as this video by Jacob Geller I found early on when I started playing. It’s 14 minutes long, but it really explains in depth the awesomeness of Beat Saber.

How to play?

Currently the hardware I recommend depends on what you personally have currently.

Hardware You HaveProsConsPrice (NZD)
A High Spec PC (not a Mac):
Oculus Rift
Relatively cheap
Great build quality
Easy To Setup
Tied to Facebook now
Owned by Facebook
Some small tracking issues
$699
PS4:
Playstation VR
The Cheapest
NO CUSTOM MAPS
Bad tracking comparatively
$299-$469
Stand Alone VR:
Oculus Quest 2
Can be used anywhere
Cheaper than PC
Can be used on PC
Some tracking issues
Limited battery time
(minor gripe)
Tied to Facebook
Owned by Facebook
Preorder atm (27/9/2020)
$569 64GB
$739 264GB

If you don’t have anything, or you have a PC even, it is probably better to get the Oculus Quest 2. It can be used on PC to power up the graphics by using the computer hardware instead of the inbuilt processor.

The downside here is that Oculus is owned by Facebook, and now you have to have a Facebook account to use the hardware. That gives me a few privacy concerns, I don’t trust Mark Zuckerberg.

However, if I was to purchase any hardware right now – it would be the Oculus Quest 2.

The ability to play anywhere and take the device with you, as well as being able to play with better graphics makes it the stand out winner, even in spite of it’s attachment to Facebook.

It’s really frustrating in a lot of ways, I don’t use Facebook except for support groups I am in, I barely use instagram (but have some friends whom I have no other way of contacting) and I am on a personal losing crusade to have my family switch from WhatsApp. I think the company is evil, and actually destabilising to society.

I wouldn’t buy a PSVR just for Beat Saber on the Playstation 4, the reason for this is that it doesn’t allow for custom songs, there’s no way to load them on the Playstation, so you are confined to the original track list and whatever additional DLC packs they have. If you already have a PS4 and PSVR it’s worth picking up, but this limitation makes it super bad for getting the true value out of the game.


Will I stream again ? Will I make videos ?

I’m not sure. I really liked doing it in some ways as it kept me motivated to play a lot longer than I usually would. I even commissioned a map made by one of the greatest in game mappers – Joetastic – the result here:

This mash up had massive mapping potential.

Why it changed my life…

Aside from the obvious health benefits of finding a cardio workout that I love. It taught me that I wasn’t bad at sport – just needed some persistence, and I made it into the top 2% of players for a while – but I really dislike the ranked maps (it’s usually a lot of anime songs).

It taught me that with practice I can actually get good at stuff, and that I can improve with effort. It taught me video editing skills, it showed me how to build a community. It inspired me to finally learn an instrument and now I am learning how to sing (again) and play the piano. I know that I can improve at something physical with consistent effort now that I didn’t know about myself previously.

This game changed my life. It made it better in almost every way. Here was a motivational video I made for TikTok.

Links to Stuff

Auckland Boys Grammar School is bad. Actually.

I’m getting pretty sick of seeing my alma mater constantly in the news. Pretty much my entire experience at Auckland Boys Grammar School (AGS) was awful. Starting before I even went there. Some of this is not entirely the schools fault – I was undiagnosed for ADHD and Autism and I also had vision impairment that wasn’t corrected until two years into my high school education, and I had a genius brother who I had to try and live up to.

To attend AGS you have to live in one of the richest areas in Auckland. A lot of the pricing for housing is set so that you may attend this prestigious and self-mastabatory school. It’s the rich boys public school – and it’s made this way through zoning laws. Fees here weren’t “optional” they withheld certain things if you couldn’t pay – and it was quite pricey even in my time for poor families. They are the least progressive school in existence, and their firm belief that theirs is the best way is something that is drilled into you constantly while you are there. The amount of times I heard from teachers and staff how lucky I was to go there was bordering on parody.

Their willingness to change or even critically assess themselves is non-existant and their subject options are the blandest boring academic shit ever… I mean look at these choices…

I’m going to list a few of the major problems I had with AGS. The first is the streaming system, it’s implementation, and the damage it does to young teenagers, and especially neurodiverse kids by constantly pressuring them into exams, and changing their routines when classes are changed due to restreaming.

Once you are accepted to AGS, every student who is attending will take a preliminary test to rank you within their class system which streams students according to their academic ability. I’m pretty sure it’s a standardised IQ test. I remember taking this through the last half of my second year at intermediate. I’m fairly certain this was the first ever “exam” I’d taken in my life. I remember one of my friends didn’t realise that there was double sides to the exam and only had done half.

The outcome of this exam is not discovered until you go through one of the most publicly humiliating experiences in your first assembly. They basically list the students off in alphabetical streamed order (3rd Form or Year 9 when I was there had streams from A-M). This process is incredibly stressful, the longer it takes for your name to be read, the worse off academically they perceive you to do, based on an IQ test.

My brother is a straight up genius, I don’t mean that in like a superficial way, he’s the smartest person I know. He was an A stream student, the best of the best. When I got streamed into my first class I was in G stream. Pretty much middle of the pack. This was a massive blow to my confidence and abilities, although a constant stream of negative feedback from untreated ADHD (remember kids who have ADHD experience on average 20,000 more pieces of negative feedback than regular kids), I expected it. The hard thing for me was going to be going home and explaining that I was in G to my mother.

But there are far more insidious issues with the streaming system, the quality of teaching is markedly different in the A and B streams (as they are basically put a year ahead) and from my view and experiences received all the best Grammar had to offer in terms of getting good results. I was just inside the cut off for having an additional subject in my course load – Latin was compulsory for students ranked G or above when I was there, with French and Japanese as your two options for different subjects. Then you get the standard white bread academic education subjects, in the first year the core subjects were English, Mathematics, Science, Social Studies, Latin (if graded high enough in the entrance test), and an additional language.

The 2020 curriculum is much the same but with some improvements.

The introduction of Te Reo Māori is a great thing to see, as is technology (which was like woodwork or something when I went), those lesser subjects you are not graded on per se but instead given effort grades for your work in their classes.

Everyday you go to that school, your basically constantly working toward another set of exams, the first set of exams in your first year is the most crucial in a lot of ways as you get re-streamed and have an opportunity to correct a bad one off result and to get into the A&B stream before it heavily changes in the second year and starts advancing more quickly than the other streams. The pressure to succeed at all times is brutal.

The way they referred to the class differences at my time was that it was expected that all the “Polys and Māoris would end up in the lower set of classes”, teaching resource and quality of teachers gets worse the lower you go down, they will sprinkle a handful of good teachers throughout the lower streams for some subjects but on average you will receive a lower grade of teaching the lower you go.

This racism was explicitly explained to me by multiple teachers, we we’re reminded we’d be dumb like them if we didn’t work hard and would graduate over the back fence (to Mt Eden Prison) like those Māoris and Polys in lower streams. They are expected to fail, which if you know anything about how teaching works, becomes a self fulfilling prophecy. Teacher expectation is one of the biggest drivers of student success.

So returning to my first exam period, I was pretty demoralised, I knew I was smart, maybe not as smart as my brother (He never seemed to struggle at all with his homework and just was good at stuff). I worked incredibly hard, I had some teachers who were incredible, and I still retain most of my Latin knowledge from my first term thanks to Mr Kirby who basically figured out a way to cater to most people’s teaching styles, I’ll remember his “latercising” to remember “sum, I am, es, you are… etc” for the rest of my life.

I came in near the top of the School in Latin, and was devastated with my 90+~% result. I struggled and studied harder than I knew I could, I mean I was doing consistent 4-5 hour nights of studying trying to make sure I could get into A or B stream to make my Mum proud. (She’d sacrificed a lot to get us in the zone to go here). I did well in most other subjects except Mathematics (I am pretty sure I have dyslexia for numbers – dyscalculia). Mathematics is especially hard for my brain to do, but I can remember sequences of numbers fine…

After all this effort, I moved up to stream C. C. Fucking C. I was so fucking mad, I felt cheated, I felt like I would always be incredibly dumb. But this compounded heavily when nearly all of my teachers were changed, each with a new way of teaching, and some were absolutely fucking rubbish who just showed up drank liquor under their desks and threw books at my head when I was being disruptive (Shout out to you Mr White).

I didn’t really recover from not making the grade to be honest, I am pretty sure that with medication and proper understanding of ADHD I would have been an A stream student. But trying so hard, and falling just short of being able to progress into a better stream killed my motivation. I didn’t do the massive amounts of study required to just do a good job. Teachers generally hated me, I was disruptive. In some classes I was ok, in others I was bored to tears at how slow the material was taught and what the point of learning stuff like math even was (this fucked me up real bad later in life when I did software engineering – that was a mighty deficit to overcome).

Disruptive students were punished by being generally excluded from the classroom. I was excluded a lot, I missed out on a lot of teaching, I had detention often. Self-depreciation was my main defence mechanism to survive at this school and I relied on it everyday to withstand getting bullied, you become the class clown so that you get a rebel attitude and the meaner kids are less likely to make your life hell.

I think during my time at AGS I drifted started in G moved to C fell back to E then F, then H in my final year where I dropped out to attend University instead. My time management for assignments was near non-existent, unless I was immediately at threat of losing grades I didn’t start until the night before. All nighters were common. This is common with all ADHD kids. Things are either an immediate threat or not a concern.

This too became my exam preparation after years of being told that I would succeed more if I focused more, or that I had such potential. After trying so hard constantly at school only to fall short, I developed a why bother attitude. My Mum was disappointed, and the comments in my report cards directly reflected the fact I had ADHD, but no one knew what it was really – so I constantly was trying my hardest but couldn’t because ADHD doesn’t let you tackle stuff that way untreated. I was burning myself out constantly trying to be just average due to inattention and focus issues.

Now let’s move on to the massive problem no one wants to talk about at AGS that I believe based on everything I’ve seen in the media recently about this stain of patriarchy. Women were lesser, the culture around masculinity and academic success was always to show that we were better than women.

The only interaction you get with girl’s at AGS is if you do a few special extracurricular activities such as Drama. I did this, so I got to hang out with girls a lot. I was a theatre kid, went from being an extra in my first year to cast as a lead in the last year I stayed a full year.

I think I got inoculated against the vast majority of sexism (but still had a lot being honest that took as recently as four-five years ago to finally process out of my system) that occurred generally if you were a sports guy. Those guys are basically bred into being sociopaths embracing the worst of toxic masculinity. Women were conquests, losing your virginity at that school was a badge of honor. Homophobia was built in. The F slur for gay people was the most common insult.

You couldn’t show weakness, and I remember bullying one kid in particular who was lower on the pecking order than me. We were savagely ruthless to this kid. I feel awful looking back, I remember at camp he broke his arm, and we mocked him for being a “pansy” for a full week. He came back the week after camp with a cast having had a broken arm untreated for 5 days. The “Be a Man” thing was super true here and showing any kind of emotion at all would make you a target. Teachers at Camp joined in savaging this kid (except for like that one teacher or parent who came along and was like horrified and looked after them as best they could – I ended up being nicer to him later in the week away from other kids if I could – delicately balancing my need to not be like this with my need to survive).

Status and by that I mean wealth and power were always major dynamics at the school. People knew if you were poor and that made you less than. Status symbols when I went here was the cellphone, and in particular the best status symbol one could have was the indestructible and cool looking Nokia 3310. Texting/calling was expensive as shit back then, like 20 cents per message and like $1 a minute to call or something crazy.

I remember once going round to a very famous NZ celebrities house as I was friends with his son at the time. I went there once and I was hated pretty badly by this guy, they made it perfectly clear that their son shouldn’t associate with someone like me. This happened with all my “richer” friends who quite often lived out of zone but got in through string pulling somehow. My experience with parents was always negative, having ADHD is kryptonite for being someone parents like.

By the time I was 15/16 I finally burned myself out (from my anecdotal evidence this is when most kids with undiagnosed ADHD burnout). I started missing school a lot – I was clinically depressed at this point, due to constant negative feedback and bad self-perception. I missed so much school I nearly had to repeat the year. I still managed to pass all but a few of my exams so this didn’t happen.

This is also around the time that you’ll find a lot of kids at AGS killed themselves. We had a few of those assemblies in my time, and it was often the kids in the highest streamed classes who had immense pressure from sustained engagement. They would start drinking around this time, and interacting with girls at parties and shit. This pressure got to a lot of them… The school didn’t really give a fuck about mental health in the 90s. I sure hope that’s changed now.

So whenever I see the latest dickhead who happens to be principal at this steaming pile of misogyny, toxic masculinity, homophobia, racism which just creates generations of sociopaths. I think back fondly to the day I realised I could walk out those fucking gates never to return. It was truly the school fucking motto – through rough ravines to hallowed heights.