On Self-Diagnosis, My Story

TW / CW trauma, suicide

It’s always disappointing to see the same problems occurring in the media around mental health, and especially neurodivergence. Not only were there a number of factual errors, but the very people meant to help us have made clear their ignorance.

There are extremely tough barriers to getting a diagnosis, sometimes self-diagnosis is all we get. Especially if you have intersectional identities.

I’d like to make a passionate defence of self-diagnosis. I’ve been in the mental health & disability advocacy space for just a little over two years. An unpaid often extremely emotionally demanding activity that we do because we care deeply about other people, especially those who are facing the difficulties of unidentified neurodivergence and helping those already identified.

Listen to the experts they tell us, they know best. If I did that I’d be dead. I’ve seen a doctor about 200-300 times in my life for 37 years while I accrued a various assortment of physical and mental health problems, with them completely missing the root cause. I have been diagnosed with asthma, dermatitis, Crohn’s disease, anxiety, seasonal affective disorder, panic attacks, and I’ve had to battle substance use issues.

I’ve known since I was a young child I was different to my peers. I got a lot of the labels that neurotypical people give us when they don’t understand how our brains work. Labels like lazy, stupid, crazy, idiot, thick, too loud, too quiet, too intense, too much, insightful, an old soul, a know-it-all. I’ve been asked consistently by people in my life what is wrong with me. A few times people derogatorily referred to me as Autistic.

When I tried to get help people told me I was overreacting, I should “be a man”, and harden up. I wasn’t believed by my doctor for a year when trying to get diagnosed with Crohn’s disease, they said I was looking for excuses. A year later I was diagnosed, put on an unsuitable medication for the type of Crohn’s disease I had, and a few years later I lost 30cm of bowel that needed to be resected.

I got diagnosed with ‘depression’ that year. But I knew I wasn’t depressed for no reason, as science tried to tell us at the time, this was apparently a biological problem resulting from a chemical imbalance (which has been found to have no basis). Medication did nothing for me. I had learned at University in psychology that I definitely was an ADHDer. I had irrefutable proof in my school reports in childhood.

I argued with my doctor to give me a referral. They told me it was unlikely, but referred me to a public psychiatrist. I took all my evidence. They didn’t even look at it and said it was not possible and changed my antidepressant. I nearly died taking venlafaxine. When I contacted my doctor about the full central nervous system zaps I had, the unbelievable head fog, and a near relentless suicide ideation. I was told to persist and it would go away. It didn’t, and I missed a lot of University due to being unable to make it to the course due to these effects.

I got put on another antidepressant medication. It did not work. I spent the next two years at University burning myself out, getting extremely sick, and ending up in hospital with Crohn’s disease flares.

I couldn’t complete my degree. I stopped trying, until a few years later. This time studying software engineering. I was doing well as computers are a hyper fixation of mine, and I could hyperfocus. However, for some subjects I could not focus, no matter how hard I tried. I was determined to get an ADHD diagnosis at this point.

I took all my evidence to the one doctor in Auckland who specialised Adult ADHD at the time. After a three hour assessment that went into every detail of my life, a T.O.V.A test, and an interview with me and my wife. I was diagnosed with ADHD-C. Given Ritalin and a pamphlet on the Christian faith for education. The pharmacist I took my script to said “Are you sure you even need this? That doctor just prescribes it for anyone”.

Medication helps for some traits, but I still had no idea how my ADHD manifested in every part of my life. The dominant narrative at the time was that ADHD was a superpower. Reading information available online in official publications made me feel like I must not have it, and the pharmacist questioning me made me fall into actual depression. It had been reinforced in the education system that I was a bad learner, so I stopped looking.

I must just be a lazy, irresponsible, uncaring person. It meant that I couldn’t advocate for myself, and caused issues with being abused because of it.

Around this time I started getting constant anxiety, I also was having panic attacks at work. I had been rotated onto other antidepressants, and was on sleeping pills regularly. I had massive complications from Crohn’s disease. It eroded my self esteem completely.

In 2019 on Twitter, I saw someone tweet about ADHD, more specifically it was my life. I saw myself, I found out so much about how things were affecting me, but a piece was missing.

In 2020, I had a “mental breakdown” which I now know was Autistic Burnout It was like a bomb went off in my brain. My senses were on fire, I couldn’t think at all, I’d ruminate, I’d self harm, I wanted to not exist at all anymore. The response was to pump me full of antipsychotics, benzodiazepines, and more sleeping pills. It made me more unstable and I attempted suicide.

My suicide attempt broke me in a good way, I got lucky. I was just mad people needed it to get this bad to actually care. I needed answers, ones not being given to me. 

I connected with more mental health advocates for diagnoses I didn’t have, and Autistic people were extremely relatable. After four months of research I knew I was Autistic. Not only that, nearly every perception of what it means to be Autistic is entirely incorrect. We are harmed every day by bad science.

I self-diagnosed. I had it confirmed twice, once at the end of my six free sessions with a psychologist, and a second time “officially” with a psychiatrist, a privilege afforded to me for nearly dying.

Want to know what is worse about this? All the conditions I had alongside this are more common in Autistic or ADHD people. I am a near textbook worst case scenario for the effects of unrecognised and unmanaged Autism/ADHD. 

I stopped taking my immunosuppressants after I found a link between stress and Crohn’s disease. I manage my sensory environment which causes stress using accomodations from solutions the experts on this – Autistic people – provided. I received a letter from my doctor yesterday. It’s in full remission according to my gastroenterologist.

I spent 37 years not knowing why my life was so difficult while constantly gaslighted by medical professionals who made my life hell by forcing me to push through pain, weight gain, serotonin shock syndrome. I lost jobs, friendships, and failed academically despite being “smart”. I had no sense of self. I have somewhere in the realm of 30-60k of student loan debts I have for misdiagnosis. I lost 30 cm of bowel due to poor treatment.

Self-diagnosis is valid, and the “professionals” in this industry are some of the people who know the least. I know this because I’ve helped two people with PhDs in psychology realise they too are neurodivergent.

So maybe we could start listening to the actual experts, those who live a divergent life everyday.

Published by roryreckons

I am an ADHD/Autism Coach as well as ADHD/Autism/OCD/CPTSD advocate and independent ADHD/Autism researcher. I am an ADHD/Autism Coach who trained through the ADD Coaching Academy. I write mainly about ADHD/Autism/OCD/Mental health issues, but will also discuss morality, abolition, and current affairs occasionally.

2 thoughts on “On Self-Diagnosis, My Story

  1. Independently of each other, a psychiatrist (after 10 sessions) and a health counsellor (after 12 sessions) identified me as being on the autism spectrum – probably Aspergers. But as I was 60 years old at the time they advised against obtaining an “official diagnosis” as there would be no assistance available to me because of my age, and because of the stigma often attached to the label (even by some the health professionals) would be disadvantageous. Besides, the cost would be prohibitive if I went privately, and my “symptoms” aren’t severe enough (in other words, after coping for 60 years I’ve made “adequate adjustments”) to be eligible for the public waiting list.

    As autism isn’t at a disease or a disorder, I no longer use the word “diagnosis” when referring to being autistic or neurodivergent. Instead I refer to the situation when someone learns or discovers they are autistic/ADHD etc, no matter how they learn that they are. I think one one of the best ways of knowing if you are autistic is if other autistic people recognise you are and/or you you relate to the experiences of autistic people. Quite simple really 🙂

    Like

  2. Absolutely this should be the standard. The diagnostic process was so degrading.

    “How do you know character motivations in books?”
    “How could you do acting?”

    All the diagnostic tests for this are awful.

    Like

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