The impact of a late autism diagnosis, and some reflections | disability

I was diagnosed with autism when I was 15, after a few months of the question mark being over my head.

The first time it was bought up was by an orthopaedic surgeon who asked if I had Aspergers as I walk on my toes and was about to start seeing CAMHS; before him, it had never been questioned or considered. My mum and I were stunned, and were upset for weeks. Looking back, I know that we shouldn’t have been – but it was just so shocking at the time. By the time we met my psychologist not long after and he brought it up, we were no longer surprised. But that didn’t mean we’d quite accepted it yet, it didn’t mean the process was without difficulty.

The issue of girls going undiagnosed is well documented. Many are diagnosed much later than me, too, but many boys are diagnosed a decade before I was. There are some that would argue that it’s a simple cause and effect that less girls are autistic, but with the amount of girls diagnosed so late on in life, it is becoming more commonly recognised that this is likely untrue. Regardless of the sex ratio of how many people have it, it can be seen that boys are almost always diagnosed earlier than girls. The impact that can have on individuals, on families, is huge.

I had my ADOS (Autism Diagnostic Observation Schedule) during my time in inpatient CAMHS care. I spent over six hours on my own in my room that day, the anxiety and overwhelm and shame refusing to subside. I’m not sure I will ever forget that day, and how much my heart ached. Due to my anxiety causing me to refuse to partake in most of the assessment, I had to later have a 3DI (Developmental, Dimensional and Diagnostic Interview) in order to confirm my diagnosis.

It is difficult to describe the shame I felt for being autistic for the first year or two. I didn’t understand how I should feel. When I learnt I might be autistic, a lot of things suddenly fell into place. I understood why I am the way I am, why I feel certain ways, why I can’t cope with certain things. But internalised ableism is very, very real. “Autistic” was used as an insult and a joke amongst my year group at school. I didn’t tell anyone but my very closest friends, even once I reached sixth form and my year group was a fraction of the size and I had accepted it myself. I could never have imagined at the time putting anything about my ASD on social media, even though I was already a disability activist for my other conditions, in case it were to be found.

My mum also found it quite difficult to accept – it wasn’t that she was ashamed of me, or that she didn’t support me at all, it was just such a strange concept that after 15 years of knowing me, there was suddenly a label attached to me, a label that meant I was different but in quite a specific way. We had a lot of conversations in that first year, some teary, some productive and analytical. I am so appreciative for the place we have reached now, and for every bit of support she has given me.

I was extremely lucky that my school were very supportive from the moment the diagnosis was in question, and I’m very aware that most young autistic women do not get this experience. My teachers, particularly at A Level, were incredible and constantly made sure they were doing things correctly. Even though I was hiding my autism from my peers, in Year 12 I gave a presentation during a CPD training session to the entire staff body (I hope I get to do more of these in the future), all the while attempting to make sure no-one found out. Sometimes I wonder if anyone knew and helped me keep it quiet.

I spend a lot of time wondering what it would have been like to have been unashamedly myself for those four years at school. I let my proper personality shine through much more during sixth form, but I still couldn’t just be – I spent so much time hoping I wasn’t being too much, taking up too much space, being too ‘weird’.

When I started at university this year, I promised myself I wouldn’t let myself hide it. Don’t get me wrong, I was still a bit guarded, but I never tried to hide it and most people knew pretty quickly. I’m enjoying being myself without apologies, and finally getting to do all the autism advocacy that I always wanted to do.

I love being autistic. Maybe not always, maybe not every day. It causes meltdowns and sensory overload and anxiety. It causes fights with my family when I can’t explain myself. It causes me to spend hours and hours worrying about social norms, whether I’ve done something wrong or embarrassed myself.

But it gives me my passion for social justice and equality and for a better world. It means I spend hours researching a topic I saw in a tweet, or something my old chemistry teacher would mention offhand. It gives me my creativity and my innovation, the perspectives that not everyone has. It gives me my sense of empathy, the one that many people don’t believe we have.

I wish I had been diagnosed earlier. I wish I hadn’t have had to go through the panic attacks and anxiety that meant it finally got picked up. I wish that I never felt ashamed. But I can’t change that part. What I can do instead, is now shout about it. Show the positives and the negatives and the things that need to change. And, overall, I’m grateful I managed to get my diagnosis at all, because so many still can’t or don’t.

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