Yesterday was tough. Far harder than it had to be. I basically lost an entire day of “productivity” due to the combined effects of rejection sensitivity and justice sensitivity. I’ll explain why it’s important you understand how these interrelate with each other, and how damaging framing can be.
What is Rejection Sensitivity Dysphoria?
(NB: Not an “officially recognised” diagnosis but 98-99% of ADHD adults say they have it and one third say it’s the hardest thing to deal with)
It’s a serious part of ADHD and Autism.
Which brings us to our second social sensitivity – this one has been hell in the last few years especially.
What is Justice Sensitivity?
This is not true of all ADHD people – but definitely among people with the “inattentive” presentations of ADHD – I have found this to be extremely true. Autistic people often have this trait also.
Yesterday was a perfect storm – justice sensitivity and rejection sensitivity COMBINED
When a justice issue is related to me personally – I am caught in a hurricane – I am severely limited in control to how I respond. Social stigmatization is one of the hardest things we need to challenge with mental health conditions. ADHD and Autism especially are incredibly stigmatized. No one listens to us either.
This study came out yesterday:
The framing here is awful. ADHD and autistic people are not a burden, we are people, we have incredibly difficult lives in a world not built for us. We’ve been told this our whole life from nearly everyone – every sector of society discriminates against ADHD and Autistic people – I’m not going to link evidence here just google “ADHD/ASD and Discrimination/Stigmatization” . Every sector of society punches down on ADHD and Autistic people. Diversity initiatives only seek to exploit us, and ignore those with the most needs all too frequently.
I thought the study might be different and maybe media had reported it wrong. Here’s the abstract from the article.
Notice how there’s no framing here about how it affects the kids or autistic people – no consultation about how to frame this. The article title is “Stress and distress in New Zealand parents caring for a child with autism spectrum disorder”. The journal article itself goes into a lot of detail about issues of support and care WHICH WAS THE PURPOSE OF THE ARTICLE. But the abstract and framing talk of Autism as a burden, you should expect to only be burdened having a Autistic child.
How did I react? About as well as you can imagine.
Love seeing studies about parent strain. LOVE IT. Especially love it because one of the effects of having an ADHD child when I researched is having your parents divorce before age 11. Average was 3-6. I was 5. But lets just keep talking about how stressful it is w/o support…
Everytime an ADHD or Autistic person sees these studies who is now an adult it’s a trigger for trauma. But go off about media being ethical and shit.
All this does is REINFORCE the ableist narrative around autism or ADHD, there are fucking great parents out there who spend time educating themselves and shit – ones who know how fucking harmful it is to keep talking about “BURDENS” constantly.
Sorry my existence was hard for my parents. They chose to have me.
ADHD people have enough trauma of their own without constantly being reminded and wondering if they have been the main reason their parents divorced.
Hate that this shit derails me from what I want to achieve in the day. It’s involuntary on my part – I have rejection sensitivity and justice sensitivity. Attacking a justice issue that is related to me triggers both – I don’t get a choice about responding at that point.
Things were just made worse by people defending the article – especially parents of Autistic children. My reaction to this:
You’re absolutely not able to speak with authority on ADHD/Autism if you are just a parent and without. The worst harms I have are by my parents, even though they had “good intentions”. Our lives are constant discomfort, sorry you had to endure the decisions you made having kids.
Then when I tried to explain how harmful it was they just talked over me and explained away their position. I’d like to state not all parents did this – there are some amazing allies and parents of Autistic and ADHD kids who understand that constantly framing the “burden” narrative actually severely undermines their mental health.
Emails to a researcher involved in the project
Subject: Thanks for reminding me this world isnt made for me.
Your research was personally harmful. No actual autistic adult input. You can know that this has triggered my suicide ideation quite heavily. Shame on you.
An Actually Autistic Adult.
Email to Researcher
This isn’t a lie. I had not thought of suicide at all for a long time. Yesterday I started doubting the work I am doing.
They emailed back.
First email response – no idea what this was supposed to mean
Second email – was much clearer and “apologised” for offence caused (this isn’t an apology) – but just highlighted everything that’s wrong with research at the moment:
Just saw this.
I can’t agree more that it is important to conduct research which considers the views and experiences of people with autism, and one of our more recent efforts at AUT has focused on the experiences of adults with autism.
Likewise, the focus of this research was on parents’ experiences, which is also an important perspective.
The intent of my research was not to make you feel negative about yourself, far from it, but rather provide data that can be used to lobby the government for better support and resources for people on the spectrum.
I sincerely apologise for any offence caused.
Second email back from researcher
My reply to this:
Sorry – as you probably know justice sensitivity and rejection sensitivity are part of the condition. I cannot stop myself from speaking out here. It’s almost entirely involuntary. I know usually these errors occur out of a lack of knowledge of how stuff affects us, but that’s entirely the point.
A paper like this previously came out just a few weeks ago in another country. I understand your paper says you want to increase care but the way it’s been framed in the media and the journal abstract makes it sound like Autistic people are just burdens, this is an attitude we’ve had our whole life.
We are people, we have lives – usually incredibly tough due to the way we are treated, and the adaptation mechanisms that we use to try and survive.
Thank you for replying. I appreciate what you were trying to do, but it’s caused a significant amount of frustration and hurt even if unintentional.
EDIT – 12/02/2021 – The researcher in question has been extremely kind in responding and we are hoping to meet now to discuss the issues around this and potential further research avenues – which is a good outcome from an awful exchange started on my part. I know why I acted in this way – and I can explain it, it’s not an excuse.
The work I am doing has me hopeful about changing things, even though the only person to listen at the moment is Chlöe Swarbrick (Mental Health Spokesperson for the Green Party in New Zealand).
When no one listens generally, it saps my motivation – but I keep going for the people who are supportive, who do listen, and who also live with these conditions. I will keep going – even though I feel like I am screaming into a void at times.
Which brings me to my point – listen to people who say stuff is harmful – if they say it’s harmful don’t do it – agree and pledge to better
I love that people just brush off our concerns constantly.
“This is harmful.”
Massive diatribes about why context is important, how it’s not fair to them.
Haven’t thought about ending thing for months, but you made it come back. Well done!
I’ll be ok, I am just reminded of how impossible the task is ahead.
This lesson is true of any affected population – young people concerned about climate change, racial minorities, those with disabilities.
If someone tells you something is harmful don’t do it.
“If someone is able to show me that what I think or do is not right, I will happily change, for I seek the truth, by which no one was ever truly harmed. It is the person who continues in his self-deception and ignorance who is harmed.” – Marcus Aurelius.
The terms around neurodiversity are controversial for many reasons. If our goal is to improve mental health for all we should maybe think about adjusting terminology.
Issues around current terminology
Neurodiversity is not clearly defined. The term has been co-opted by many ableist organizations pushing the “superpower” narrative of living with Autism especially and using productive and capitalist language to talk of inclusion.
This focus in the neurodiversity movement has made some, especially those with higher current needs for support who feel excluded by this movement.
Neurotypical – this is possibly my biggest issue with language at the moment. What is a neurotypical person? When I see this used it’s always in a negative framing. There are many who feel isolated when we use this language, also people who are undiagnosed may feel excluded, they might not be neurotypical, but due to the ambiguity around the definition do not identify as neurodiverse.
Neuroplasticity – there is substantial evidence that the brain can change dependent on factors in someone’s life. If we limit to lifetime conditions in our definition of Neurodiverse then people who experience short-term mental health issues (which do happen) feel excluded.
A set of new terms, and clarification of existing terms.
Neurotypical should go (in my humble opinion). It’s divisive in nature.
Neuroinclusive/Neuroinclusive Society/Neuroinclusivity as the movement– this means anyone who has different ways of thinking including long-term disabilities, varying needs of support, temporary mental health problems, with a strict definition to exclude productive capacity from using this term. It should be a movement focused on increasing positive outcomes, especially those with the current highest needs as a priority.
Neuroexclusionarysociety instead of neurotypical. In the context of growing up in a society that was not Neuroinclusive.
Neurodiverse/Neurodivergent – as a self-identifying term is fine. It should be used in place of neurotypical, this allows opt-in rather than divisiveness. You can also frame questions with ‘or when you were growing up Neurodivergent/neurodiverse?’
This is an open discussion. Would love to hear your feedback.
DISCLAIMER: My diagnosis was made when I was known as a pākehā straight male (still in the closet rather than bi). I am likely to have received the best possible version of diagnosis and care. There are many barriers to mental health care in Aotearoa New Zealand at the moment, but these are near universal. I’ve mentioned them here.
If you have just been diagnosed or self-diagnosed:
You are valid. You are a good person. The things that have happened in your past can always be forgiven as long as you embrace a growth mindset, and understand your weaknesses. Things get easier. People with mental health conditions will love you implicitly. There’s a community for everyone. Don’t struggle alone. You are not the productive worth that capitalism has tried to define you as. You are unique. You deserve love.
I’m always on Twitter if you need to vent or talk – if I don’t respond it’s because I am sleeping or busy but I will respond – I will never judge you or share your personal details with anyone. My Twitter is @roryreckons – DMs are open. It’s a safespace – I will never violate your trust. I cannot always offer advice but I can let you know that you are not alone, understand you, and point you where to start on this journey.
My condensed mental health diagnosis timeline
1988-2000 – in school have a conduct disorder I am pretty sure here, teachers dislike me. Also have never diagnosed dysgraphia and dyscalculia – these are never detected in my education anywhere.
~1993 – start showing symptoms of depression I think I had (due to suicide ideation starting at this age).
2001 – Substance abuse problems – during this time someone says if I don’t react like others to amphetamines I might have ADHD (this is the first time I thought about it).
2002 – Have the start of major depressive disorder. I have been messing up in life a lot. Mental health is never discussed anywhere in society, except to stigmatise the “crazy”.
2009 – Diagnosed with depression – started on Fluoxetine (Prozac). No effect.
2009 – Learn about ADHD in university – believe I have it, but most science here says it only occurs in children. I have also been masking behaviour for a long time, and making adaptations to cause depression and anxiety from this issue. I don’t think it can be me.
2010 – I can’t get it out of my head that I have ADHD. It describes me too well. I talk to my doctor about it – they tell me it’s highly unlikely, but I push for a referral to the public mental health system. I take everything I can for evidence – school reports etc. The public psychiatrist doesn’t even entertain a diagnosis – says it’s my existing depression, changes my medication to Venlafaxine. I have a severe adverse reaction to this and I am told to persist for a month before they allow me to discontinue despite extreme suicide ideation and full body central nervous system zaps whenever I move.
2010 – Sleep issues constantly – prescribed Zopiclone [Doctor dislikes this long term]. Switched to Temazepam – severe adverse reaction – no sensation in extremities. Switched back to Zopiclone – been taking it pretty consistently for the last 10 years.
2011 – Switched to Citalopram (Celexa) for depression. No effect.
2013 – Switched to Sertraline (Zoloft) for depression. No effect.
2013 – Switch doctors. Tell them I think I have ADHD. They tell me they know of someone they can refer me, cast doubts on this doctors ability to diagnose. Get a referral. Spend 3 hours in assessment, costs an unreasonable amount of money, take supporting evidence (School reports, Academic records, Work History). Do a TOVA test – this showed ‘moderate’ ADHD-C. Doctor believes I have it and prescribed Ritalin. Go to fill my script for the first time and the pharmacist asks me “Do you really need this? Your doctor is just known to prescribe it.” I say yes – this fills me with doubt about my diagnosis.
2013-2019 – Spend most of my time in denial here – medication is not working, I try short release, long release, combinations of stuff, believe I can “cure” my ADHD symptoms with medication.
2016 – Put on Lorazepam for regular occurring panic attacks.
2019 – My renewal for medication is up, and my Doctor has retired. See new Psychiatrist – he says I definitely have it, switched to Dexamphetamine… IT WORKS.
2019 – 2020 – Become active on Twitterabout my ADHD, connect with the mental health activist movement – start relating to autism related memes that talk about specific effects not related to ADHD. Take an online test. Says high chance of Autism Spectrum Disorder
2021 – Diagnosed “officially” with ADHD and autism with comorbid depression and anxiety – only after undergoing a mental health crisis in the previous year related to justice sensitivity which meant I could access free mental healthcare.
Self-diagnosis is valid – if done honestly and correctly
That doesn’t mean to say “everyone is a little ADHD”, or that if you took a quiz on BuzzFeed that said you might have it you have it. But there are a number of self-diagnostic tools – ADHD Self Reporting Scale (ASRS rev, 1,1), Wender Utah Rating Scale (WURS), Mind Excessive Wandering Scale (MEWS) – when taken with honest intent a high score on these tests should indicate that you might have ADHD, these tests are used as part of the ADHD diagnosis process.
I knew I had it, everyone I know who has been diagnosed as an adult knows they have it. The world is not the same as other people experience. People in your life are constantly frustrated at you for things and you don’t know why you do or don’t do them.
There are significant barriers to accessing ADHD diagnosis, until these are addressed – self-diagnosis is valid.
What to expect after diagnosis in my experience
So the instant thing you will feel after diagnosis is relief. There’s a moment of release where suddenly the reason you’ve been struggling on hardmode with tasks that should be simple that you know you want to do but just can’t all makes sense.
This is very short lived. What comes next and how the people in your life treat you will have lasting effects on your outcomes. It’s time to discuss the grief of adult ADHD diagnosis.
The ADHD Diagnosis Grief Continuum (people call it a cycle but it’s non-linear)
This is what happens pretty much after you get your diagnosis. You get a brief moment of relief, then your ADHD negative self talk brain just goes for it. “You’re lying”, “You are just looking for an excuse”, “Convenient all the bad things you didn’t like doing and play back in your head constantly could possibly be explained by this”. Everyone goes through this. The absolute worst thing you can do to someone here is question their diagnosis. Especially if you are in the medical industry.
It’s really important if you have just been diagnosed to understand that everyone goes through this – it’s a phase – this one does go away.
My pharmacist and primary doctor cast aspersions on my diagnosis both before and after my diagnosis making me believe I didn’t have it – they fed into my self-doubt. That combined with negative conditions in other areas of my life made me question whether I had ADHD, I didn’t leave here til 2019 after getting a second diagnosis with a new psychiatrist.
[NOTE – NOT OFFICIAL MEDICAL ADVICE BUT BASED ON MY EXPERIENCE: If your meds aren’t working after several adjustments – talk to your psychiatrist about changing medications – in recent studies it has been shown that dexamphetamine is more effective at treating adult ADHD than methylphenidate (Ritalin). The reverse is true for children. They only work for ~60% of cases for either medication – don’t be like me, demand change within 12 months if you aren’t seeing effects after diagnosis.]
This part is going to come up a lot. The denial phase you can get past, however anger will keep hitting you in unexpected ways. Common anger responses are “how did people in my life miss this?”. “Damn x person for treating me this way for having ADHD”. “I can’t believe how many people have been awful to me in my life for this”. These are acceptable things to be upset about – but you will not grow if you allow them to consume you.
The truth is little was known about ADHD, a lot is still not known. The only people you can actually be mad at here is research scientists who never considered how biases might affect their perceptions of ADHD and it’s presentation. They let down the medical field, who let down you – and the snowball effect has made every sector of society buy into the deficit model of mental health. This is still occuring. Science has improved but there’s a lag in the medical field with current practices.
So you have accepted you have ADHD. But now it’s about curing it. You look into therapies, you try everything, there’s studies, evidence – breakthroughs – new tech potentially to ruin your brain with. You start doing everything you can to negotiate your way out of being “ADHD”. You strive to be “normal”. You strive to just be able to do the things that others can without having “this” about you. A lack of support here can really damage people too – they personalise their ADHD failings still as character flaws and think there’s a way to “cure” it. You can not cure ADHD.
Hello old friend… most people diagnosed as adults will have a comorbid diagnosis of depression.
The bargaining didn’t work, you don’t know how this affects you fully yet – there’s so much information everywhere, you must just be bad at doing ADHD management. You fall into depression. ADHD is still having an effect on your life but you’ve been diagnosed and the meds are helping – why are you so bad at this you ask…
This is the final stage. You can cycle back all the other phases here, or you can accept.
You have ADHD. You are different. Your brain is not the same as other people when it processes and stores information. You have problems with focusing attention, not the ability to focus. You will have bad days. You will have good days. You are an ADHD person, and it affects you in nearly every part of your life. You no longer believe that you have moral failings due to ADHD. You adapt and make what efforts you can to resolve your negative ADHD effects but you understand they will never go away.
Acceptance is the hardest stage to reach. It took me until mid-late 2020 to finally reach this stage. I’ll tell you what can make it easier.
Ways to improve outcomes [Tools/things I learned that helped me]
YOU HAVE REJECTION SENSITIVE DYSPHORIA
You do not respond to criticism or perceived criticism in the same way that other people do. You have rejection sensitivity from years of being told that you are not good enough, not trying hard enough, not applying yourself. This manifests even when you get good advice – and it can be devastating if you respect the person who gives it – it causes a wild mood swing that makes you feel extremely depressed or angry – but will usually pass within hours. A better article on this specific part of ADHD can be found here: What You Need To Know About Rejection Sensitive Dysphoria – by René Brooks | Black Girl, Lost Keys.
Find a mental health community support group on the internet
This part is absolutely essential. You will be feeling alone, the people around you might not have the condition or have limited experience with it. They will not understand you in a way that other people with this condition do. I use ADHD Twitter, I also use a discord and a Facebook support group. I shopped around a bit for a discord community because there are a number of them. There’s also usually local or regional Facebook pages for support – I do not generally recommend them as they are quite hostile.
Educate yourself – using resources written by ADHD people for ADHD people
It’s very unlikely that you will get good advice from people without ADHD on how to live with ADHD – the quality of material here is bad. It just is, it’s either passively insulting, or suggests stuff for us that will not work. There’s no one right way to manage your ADHD symptoms – but be super skeptical of any claims made by people who are not affected by ADHD. It’s absolutely vital you do this. I kept trying to use tools developed to manage my productivity, cleaning, and general life management USING non-ADHD people backed tools. They rarely will work (if ever).
This one I really didn’t learn to do this properly until 2020.
The act of doing this will make you a better person. Connect with the mental health community. Follow disability activists. Follow racial minorities, Indigenous people and start helping them.
This ended up teaching me how to empathise with those who had harmed me in my life. Especially my family. I am not going to say that you should forgive people who are obviously toxic and show no sign of repentance – but if your family has unintentionally hurt you through a lack of knowledge – practicing this enough in real life will help you to get to this step. The amount of unintentional harm that has occurred in your life will be a lot. We love to commit the attribution bias to protect ourselves – but sometimes people do bad things with good intentions, they are not bad people.
This is incredibly important not only for others, but you learn to turn that radical empathy inward. You start to forgive yourself. You start to heal. You can start to become the person you want to be.
Cut toxic people out of your life if you’ve tried educating them
This is hard too. This will hurt – but you need to assess if people are constantly denigrating you for your ADHD, an occasional joke will be ok in the right context, but people who demean or insult you should be either ghosted if you cannot handle the confrontation – or confronted (this is better and will work sometimes but it’s hard due to rejection sensitivity).
If they are absolutely vital due to familial ties or cultural reasons – mentally prepare yourself before and after when dealing with them – but don’t be afraid to do this – I’ve never regret doing it.
Know your RIGHTS in the workplace. Join your union.
Discrimination of ADHD in the workplace was present my whole career(s) except one job. It’s essential that you know how your ADHD manifests, how it affects you, and how to advocate for yourself. The brilliant Ashleigh the Advocate in New Zealand (very context specific – please research workplace rights in your own country) wrote this guide on knowing your rights: ADHD and Employment Rights – Know your rights.
You have a disability, you are disabled. [There’s nothing wrong with this term – any other version of this term is a form of ableism]. They must make accommodations for that. A union can help you with disagreements – you really don’t want to be facing this stuff alone and they are the best source of legal recourse if you need to actually make a complaint. I repeat you do not want to be alone during this process.
Morality and ADHD
I am a practicing Stoic philosopher. I describe that a bit here: My practice of Stoicism (Redux 2021). There’s a few articles on ADHD and moral development. You will most likely have been stunted in your growth in this area due to how you have been treated, you’ll most likely have a chequered past of bad relationships, potential criminality and substance use – things you attribute to moral failings. It’s kind of essential you learn about this stuff imho – if you already know it that’s fine too.
Here’s some tough love about your actions – ADHD is NEVER an excuse for abusing others, it can offer an explanation but it’s not an excuse. This scene might hurt but you need to understand the importance of accountability – this show is brilliant.
Once you have processed this video. Now take all the bad stuff you might have done, when you get the playback reel that tells you you are awful, if you have changed and grown since it occured or it was related to untreated and undiagnosed ADHD – throw that stuff away – it won’t help you holding on. You take accountability and you move forward – GROW.
My Story – What is a good person? (HINT: There are no good or bad people)
When I started watching The Good Place, I became interested in philosophy. I started listening to a podcast on the history of philosophy – Philosophize This! – This is an excellent podcast – use the 1.2x or 1.5x or even 2x feature to actually have people talk at an ADHD brain interesting speed. Do not force yourself to do this either – you need to have a decent interest or it won’t work.
The Wisdom of Marcus Aurelius
In that podcast I discovered Stoicism. Stoicism had some exceptional quotes. A book called Meditations by Marcus Aurelius (last of the five good emperors of Rome) is something I now carry with me everywhere – please note man could be interchanged for person here – it’s a 2000 year old book that I am quoting verbatim. Here’s a few quotes that I love and try and live by:
“The happiness of your life depends upon the quality of your thoughts.”
“Waste no more time arguing about what a good man should be. Be one.”
“If you are distressed by anything external, the pain is not due to the thing itself, but to your estimate of it; and this you have the power to revoke at any moment.”
“Accept the things to which fate binds you, and love the people with whom fate brings you together, but do so with all your heart.”
“If someone is able to show me that what I think or do is not right, I will happily change, for I seek the truth, by which no one was ever truly harmed. It is the person who continues in his self-deception and ignorance who is harmed.”
“If it is not right do not do it; if it is not true do not say it.”
“I have often wondered how it is that every man loves himself more than all the rest of men, but yet sets less value on his own opinion of himself than on the opinion of others.”
“When another blames you or hates you, or people voice similar criticisms, go to their souls, penetrate inside and see what sort of people they are. You will realize that there is no need to be racked with anxiety that they should hold any particular opinion about you.”
I could honestly quote from this book forever. The advice in this book is exceptional. I was drawn to Stoicism for it’s practice of virtue ethics – or always striving to be the best version of yourself.
Understanding that you are only responsible for your thoughts, feelings, and actions towards other people that you can control is one of the key lessons of Stoicism. This stuff takes a while to sink in and you will fail at it constantly – self forgiveness is the key.
The Good Place (Spoilers and Quotes)
One of the things I like most about The Good Place is it’s main themes. That there are no good or bad people. That with love and support all of us can change. That taking action is how you become good.
Here’s a handful of my favourite quotes from the show to round out this post.
“What matters isn’t if people are good or bad. What matters is if they’re trying to be better today than they were yesterday. You asked me where my hope comes from. That’s your answer.”
“We choose to be good because of our bonds with other people and our innate desire to treat them with dignity. Simply put, We are not in this alone.”
“If all you care about in the world is the velvet rope, you will always be unhappy no matter which side you’re on.”
“The fact that it makes you nervous is exactly why you should do it.”
“Come on, you know how this works. You fail and then you try something else. And you fail again and again, and you fail a thousand times, and you keep trying because maybe the 1,001st idea might work. Now, I’m gonna and try to find our 1,001st idea.”
“The point is, people improve when they get external love and support. How can we hold it against them when they don’t?”
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/Autism 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 for about 3 years – then I learned to mask everything.
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.
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):
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 use problems?
Lets take a look:
So a large number here will have been committing crimes related to substance use. 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.
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.
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.
In Abolitionist Demands, we outline a number of material demands that take the path to prison abolition. The demands have been broken down into short-term, intermediate-term, and long-term, as well as into categories concerning policing, courts, and prisons. We recognise that some demands can be enacted through policy reform, while others will require a revolution in economic and social conditions. Readers are encouraged to take the demands and make them happen.
This booklet, made to accompany our workshops, outlines the guiding principles behind transformative justice and presents a brief but malleable plan for dealing with interpersonal harm in a way that does not involve incarcerating, punishing or isolating people. In a friendly, accessible tone, it includes answers to common questions about when and where transformative justice can be used, as well as links to community resources and toolkits. As it is made to supplement face-to-face discussion, we encourage readers to use the booklet as a starting point, discuss it with loved ones, and think about how you can apply them to your own community.
Words, Actions, Dehumanization, and Accountability – Podcast by Brené Brown (one of my favourite social researchers, and role models). I’d recommend both her series called Unlocking Us and Dare to Lead – especially if you are a leader. Read her books, watch her TED talks.
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 I as an Autistic, ADHD, and OCD person 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 acute Autistic Burnout.
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:
a) a person who can endure pain or hardship without showing their feelings or complaining.
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 as an ADHD, Autistic, and OCD person 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:
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”
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 as an ADHD/Autistic/OCD person makes me sometimes take on unwanted or unneeded feelings. Of all the Stoic virtues to master, this is the hardest for me.
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.
“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
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.
“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.
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.
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.
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.
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.
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.
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.
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.
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.
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 diagnosis
Percentage of respondents
ADHD is managed already
Newly discovered they had ADHD
Other health priorities
Higher insurance premiums
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.
Agreement or Disagreement
I have the support I need to manage my condition
My ADHD is being managed well
Very slight disagreement
I have been provided enough publicly funded options to treat my ADHD
I believe that my primary health care physician (Your Doctor or General Practitioner) has a good understanding of the challenges and needs of my ADHD
ADHD often negatively affects my day to day life
ADHD often positively affects my day to day life
No agreement or disagreement
I believe I would benefit from more support
Getting an ADHD diagnosis is easy in New Zealand
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 Zealand
No agreement or disagreement
I feel safe disclosing my ADHD status to new people
I believe that the general public is well informed about how ADHD presents and the difficulties of living with the condition
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”
“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:
“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):
“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.”
“setting realistic expectations of myself”
“negative thinking cycle”
Less common themes have been summarised in the table below:
Day-to-day life issues
Percentage of respondents
Managing others demands
Anxiety or intrusive thoughts
Education on how ADHD affects their lives
Losing common items
Socialising and Relationships
Maintaining eating habits
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.”
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.
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.
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.
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
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
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
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
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.
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
Introductory statement for survey:
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.
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)
IMPORTANT: To trans women – there’s not much definitive research on how you have been failed in ADHD/Autism care yet. There needs to be 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. 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 cis women and cis 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 ADHD and Autistic cis women
If you’ve already know this, I don’t mean to rehash what you already know, it’s simply to help anyone of any gender who doesn’t know this already.
To cis 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. If you haven’t read the science and don’t already know I can give you evidence on 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. We constantly believe that we’re not as good as anyone else. We constantly assume that we are “crazy” or “hysterical”. We’re constantly becoming someone who we don’t want to be. So we start masking your symptoms with “hacks” or things we’ve found that seem to work for us, we limit behaviour that is natural to conform to an idealistic “normal” standard. We 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 cis 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 cis woman will mean that you are having to put in more effort constantly than your undiagnosed cis 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 ADHD or Autistic people 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 cis women to this field have been constantly erased.
The scientific field has always been dominated by cis 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 cis 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 cis men than cis women.
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 cis women due to the science.
Science then did studies into diagnosis rates of cis men and cis women. Men were more likely to be diagnosed with ADHD/Autism than cis 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 cis men rather than cis women with these conditions with confidence.
Now when I do this, cis 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 cis men than cis women as a result of neurological development due to gender differences or put simply cis men act like cis men because they have cis men brains, cis women act like cis women because they have cis women brains.
I mean looking at it, it seems reasonable – we’ve been taught that cis men and cis 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 cis women are hardwired for empathy and social competency, and cis 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 problem is that when measuring these neurological differences with actual people in the general population the traits they describe are present in both cis women and cis 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:
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.
Cis women are less likely to have their learning disabilities accommodated for than cis men. Cis women are less likely to be diagnosed by doctors. Cis women are less likely to be believed about their symptoms. Cis women are more likely to be given a diagnosis of anxiety or depression than either of these conditions correctly. Cis women are more likely to be doubted when challenging these diagnoses.
STOP GASLIGHTING CIS 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 cis women are expected to do more than cis men. Being different or speaking out is acceptable if a cis man but not if a cis woman.
I don’t know how to tell you that our society is ruined for cis women for those who didn’t know – 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 research into what being non-binary actually means and I have realised 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 ALL women – or we are going to keep getting garbage science.
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 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:
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.
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 ADHD people 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.
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):
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 (faulty but common measure of intelligence) 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:
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.
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 Autistic people.
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.
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.
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:
Pina – https://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 Brooks – https://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 Donovan – https://twitter.com/danidonovan – an ADHD comic creator focusing on acceptance and understanding of ADHD, also a prominent ADHD TikTok personality. Shira – https://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.
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)).
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.
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:
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.
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”.
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.