Photo by National Cancer Institute on Unsplash
‘Based upon everything we’ve discussed, I believe you clearly fit within the threshold of autism’.
I couldn’t help but smile.
I feel like getting my autism diagnosis is a cause for celebration. I can now actually describe myself as Autistic. I don’t need to caveat as ‘probably autistic’ or question whether I really am or not anymore. What I had basically assumed to be the case 7 months ago turns out to actually be true.
Some people will find my reaction quite surprising. After all, isn’t getting an assessment for a neurological and development disorder actually meant to feel bad?
Autism has explained so much about my life, such as the way I can be extremely sensitive to certain things (emotions, touch, people). Understanding that there is an actual neurological difference is such valuable information, and it has already helped make sense about so many things that have happened in my life.
Yet even if I knew this was probably autism, there was always some element of doubt. Getting a diagnosis means I can have confirmed medical expertise that this isn’t something I’ve made up ‘all in my head’. I haven’t ‘decided’ I am autistic due to being an attention seeker. Nor am I trying to explain away my problems away by finding a fake reason.
Instead, I’m someone who has followed my gut when presented with clear information that I spent hours researching. I’m actually proud of myself that I’ve managed to persevere with this, despite the many hurdles to get assessed (not to mention the stigmas attached).
In this sense, getting an autism diagnosis within seven months is actually very fast. I have friends who are looking for ADHD/Autism assessments but will probably need around a year or two to get one done. Getting an appointment for it is nightmareish, whilst the costs are extremely prohibitive. I’m fortunate that I had the support of my parents, as well as finding a service that was cheaper (~£650) compared to the usual amount of £1000-2000+ in the UK.
On top of actually finding a provider, there was also the difficulty completing the assessments themselves. I had a series of joyous questionnaires to fill in, which ironically are not very autism friendly. The questionnaires are rather binary, and it’s hard to critically judge yourself as well. For example, It was hard to describe myself as a very sensitive person, simply because I only know the experience of my own life. I just assumed that everyone experienced emotions this intensely.
There was also the fact that the assessment needed the perspective of my mother. Logistically, this added the complication that my mum doesn’t speak English incredibly well. It also meant having a fun-filled deep-dive of my childhood behaviours between a psychologist, myself and my mother.
More fundamentally though, there are many things that she doesn’t remember anyway. Asian parenting styles were not ones that have deep levels of observation for childhood quirks compared to a more modern, western style. I was worried that this would mean that the assessment would fall in on itself due to a lack of sufficient ‘evidence’.
The irony of all of this is that I have an increasing amount of autistic people in my life, and based upon my behaviours, many of them could probably tell within twenty minutes.
I wasn’t sure that I would get a professional who has a modern understanding of Autism. I actually had a neuropsychologist tell me a few weeks ago that I could not be autistic because I was able to make jokes, and liked too much variety in my life. I was essentially too ‘functional’ to be Autistic. It was rather depressing that this is still a prevalent view in 2024.
Fortunately, my autism assessor runs a clinic in London. He told me how he comes across many ‘highly functioning’ people who are actually neurodivergent and/or autistic themselves. The myth of autistic people only being ‘low functioning’ is fading, albeit slowly.
I see getting this autism assessment as more about understanding the differences in my way of being. I certainly do not think it is a disorder. Yet, following a lot of consideration, I would still describe autism as a disability. I don’t believe that there is anything wrong with me, but because the system is so ill-equipped for my existence, it’s about seeing that I am going to be perennially disadvantaged.
The search for an answer that has unexpectedly dominated my 2024 has now come to an end.
I know that having the diagnosis doesn’t really change anything in of itself. But it does now let me close this chapter, and move on with my life.