If you can’t get a job done properly, do it yourself
Chapter 4 – My self-diagnoses of ADHD and autism – at last some insight and compassion from within, but official validation from health services still elusive
When I chanced upon my ADHD diagnosis through an accidental Google search on how to stop losing things in 2016, it was a paradigm-shifting moment.
I could finally have some compassion and understanding for myself.
Encouraged by my new insights, I made friends with others in the neurominority community through ADHD support groups and on social media (people who would later help me to establish myself as a neurodivergent activist, speaker and autistic peer mentor).
They were the misunderstood ones like me with social difficulties who struggled with finding sustainable work that didn’t make them unwell. They got what it was like to always feel like an outsider. Or what it was like to be the butt of innumerable in-jokes and the object of constant frustration, bullying, bewilderment and disapproval, still living with their parents in their 30s, struggling to feel like a ‘real adult’.
The more I researched, the more self-knowledge and perspective I gained. Knowing facts like ‘adults with untreated ADHD in the UK are twice as likely to be fired from a job and nine times more likely to end up in prison’ and realising the disproportionate share of the latter that are likely to be racialised people, brought home what I was up against and why it was poisonous to compare myself to my more privileged and neurotypical peers.
Finding the Neurodiversity movement and more importantly, those who were multiply-marginalised or didn’t have to be given an education on what racism is (beware those majority-white support groups who have a ‘no politics’ policy where talking openly about racism becomes very difficult, if not impossible), was when true healing could begin.
But I still craved the validation and certainty of an official diagnosis and access to medication that could make a substantial difference to my exhaustingly chaotic existence.
Little did I know how hard that would be to get…
Neo-liberal mental healthcare
I am based in the borough of Camden, supposedly one of the best areas in London for mental health. Yet even here, an ADHD referral can lead to waiting lists of up to five years with no recourse to getting on a shorter one.
Before that, there are barriers in getting referred by GPs who, I believe, are largely ignorant or suspicious about ADHD as a valid diagnosis and have biases that impair their ability to believe a racialised woman like me could have it.
When I first nervously and earnestly raised the issue with my GP and presented my ADHD self-report scale and findings, the first thing they said, with a patronisingly concerned, tone was: ‘Are you sure it isn’t anxiety? The medication is pretty heavy.’
Another GP would only offer anti-depressants for my anxiety. Impatient with my insistence on an ADHD referral, they curtly said I should just be ‘grateful’ for what I could get.
In the interim, I took up another GP’s offer of a referral to Improving Access to Psychological Therapies (IAPT) consisting of six 30-minute sessions (most of which I turned up late for so were actually 20 minutes…). The therapy was delivered by someone who, frankly, both looked and made me feel like they were very newly qualified.
There were lots of printouts, mindfulness/CBT exercises and strongly suggested recommendations for generic workshops (‘why don’t you try the one on anxiety?’). The whole experience made me feel like I was living in a vacuum – there was no space for understanding or discussing any of my intersections, and a focus instead on what you can do to think more positively (reminded me of this cult I was in…).
The inaccessibility of diagnosis
Fed up with getting nowhere on the NHS, I got a private diagnosis in January 2018. Although my relief at finally being vindicated with an ADHD diagnosis was palpable, it had cost me nearly £600 to get it. Further appointments combined with medication prescriptions cost £270 per month.
Meanwhile, the therapist I had found, one of the only ones I could find who knew anything about ADHD, but who appeared to know nothing about racism, cost £65 a week. The only way I could afford all this was through the privilege of having supportive parents.
Many multiply-marginalised people I know could never afford this, given we are most likely to be in low-income insecure employment, if we’re able to work at all. In my experience, many are also estranged from families who fail to recognise their conditions or accept their identities. Most probably don’t make it to diagnosis or even self-diagnosis.
I had been recognised as having ADHD now, but something was still amiss. Not all my traits felt as though they had been explained. After extensive research, prompted by my partner and an acquaintance who has both autism and ADHD, I further diagnosed myself with autism. The Samantha Craft list of autistic female traits provided further confirmation for me.
Yet my autism could easily have been missed for even longer than it was because I don’t present with some of the better-known autism characteristics. I’m social, articulate and able to hold some eye contact (i.e. mask), which means I’m often told: ‘but you don’t look autistic!’ or ‘you must be one of those high functioning ones’ (yes, someone really said that to me).
People Assigned Female At Birth (AFAB) like me and women are more likely to be identified as having a mood condition like bipolar disorder, Borderline Personality Disorder (BPD) anxiety, or depression.. If you’re racialised you’re also more likely to be labelled as having anger management or behavioural issues (especially at school), poverty-related issues, or even to be sectioned as a schizophrenic and/or violently psychotic (especially if you’re a black man).
My autism could easily have been missed for even longer than it was because I don’t present with some of the better-known autism characteristics.
The issues around getting an autism diagnosis are compounded by the media’s narratives of what autism should look like, making it harder for people like me to even self-identify as autistic, never mind getting professional to agree that’s our condition. Rain Man (1988) and TV series like The Big Bang (2006) and The Good Doctor (2013) etc. portray an image of numerate nerds, but I don’t find maths or science easy.
I have probable dyscalculia and maths anxiety for one…,I liked having friends and socialising (I would now define myself as an ambivert) and I wasn’t interested in organising or collecting train sets.
I can only think that these ingrained cultural stereotypes of autistic people being socially inept white male savants unable to hold any eye contact, influenced the quick dismissal of me having autism when in December 2019 I finally went for my NHS ADHD assessment session, which included an autism test called AQ10, a more concise version of the AQ50 test.
My first red flag was when the assessor started asking leading questions such as, ‘You don’t collect things do you?’, leaving me angry that he could so blatantly skew the assessment with his foregone conclusions, despite my long months of research and reflection.
Needless to say, I didn’t pass the test.
