Advocacy – What it means to me?
Advocacy can simply be defined as activities by an individual which aims to influence decisions within political, economic, and social institutions. Advocacy includes activities and publications to influence public policy, laws and budgets by using facts, their relationships, the media, and messaging to educate government officials and the public. Advocacy can include many activities that a person or organization undertakes including media campaigns, public speaking, commissioning and publishing research.
For me this means – I am going to be far more active in all of these spaces this year trying to raise awareness, support, funding and will be meeting with prominent politicians to try and lift the living conditions of people who live with either Attention Deficit Hyperactivity Disorder or Autism. I will have a particular focus on raising the issues around those who are currently being left out of the conversation – specifically most adults with these conditions, a large number of which are women due to originally bad science leading to under diagnosis, as well as making sure that those communities without the means to access are prioritised – in this case Māori, Pasifika, Asian, and other BIPoC communities must be prioritised for care – as these are the people who are not being shown in what little data we have on ADHD in New Zealand.
I am going to focus this article on my ADHD because I am still very much educating myself on Autism – this will be a blog for another time.
Who am I?
My name is Rory McCarthy. I have been diagnosed with ADHD since 2013. I was initially diagnosed generalized anxiety disorder, and intermittent and sometimes intense depression. Last year after receiving critical mental health support, my psychologist told me that I likely had Autism also. This diagnosis was confirmed in January of 2021.
My ADHD diagnosis story
At all points during my life – I have struggled. I was a relatively good student. I achieved high grades in certain areas – and I had intense passions, I hyper-fixated on things that were not neurotypical hobbies like other kids. I had problems maintaining friendships. I was a creative child who loved Drama class and school plays were the area where I shone most, and was most allowed to be my authentic self.
I was also bullied consistently, and not just by kids. The worst abuse I have suffered in my life has come from adults or authority figures in my life. I believe that this was all due to a fundamental lack of understanding about ADHD.
By the time I was 15 in high school, the constant negative feedback that ADHD children receive (especially those who are undiagnosed) started to catch up with me. I started becoming depressed. Anecdotally this is where a lot of other ADHD people I know have broken within the neurotypical education system.
The reason for this breakdown – I believed the following things about myself – “I am lazy, stupid, or crazy”. This is something that had been reinforced to me by my teachers, and other adults, as well as in peer relationships. Research done by Dr. William Dodson has theorised a new condition that is not officially recognised that presents in children and adults with ADHD known as Rejection Sensitive Dysphoria (RSD) – or severe emotional pain and overreaction to critique. The sad reason for the development of this condition is that ADHD researchers estimate that by age 12, children with ADHD get 20,000 more negative messages about themselves than other kids their age. All that criticism can take a real toll on their self-esteem.
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.
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.