I spend a lot of time on social media, as most people in their mid 20s do, and most of my newsfeed is Autism, ADHD, and neurodiverse content because that’s just how an algorithm works and I like being an enthusiastic part of the community. Spreading knowledge and awareness is something I love to do. Lately though, there seems to be a trend within the community of people putting others down for not being formally diagnosed with Autism and I wanted to address that in this post.
I was diagnosed in April 2024 when I was 23 years old and it was not easy to get there. I spent all my teen years and the beginning of my adulthood trying to figure out what was ‘wrong’ with me. When I was 19, as soon as I started university, I went to my GP saying I think I have depression and anxiety. I thought I did for years because of how much I struggled. My doctor diagnosed me with mild depression and social anxiety. Towards the end of the pandemic, when I was 20, they starting giving me online Cognitive Behavioural Therapy (CBT) sessions to treat my social anxiety but nothing my therapist said seemed to describe what I was feeling.
She described social anxiety as thinking people were looking at me and thinking I was weird. But I knew people were looking at me and that they knew I was weird because many people told me as much. I remember saying “I don’t think I have social anxiety. I’m not anxious about going into social situations. It’s more like I don’t know what I’m doing socially so I either overcompensate or barely say anything and then I analyse the whole interaction meticulously for days afterwards.” I explained not feeling anxious enough to cause a panic attack but still experiencing them (plot twist: they were meltdowns), how I’m quite happy to start a conversation but not handling small talk very well, and how I mostly feel awkward rather than anxious. My therapist’s response was verbatim “No. You have social anxiety.”
I continued with my CBT for several months despite it not working for me. Then I heard my mum’s friend talking about her daughter’s recent diagnosis of Autism and what that means. What she was saying made sense and I turned to my mum and said “Mum, that sounds like me!” and that’s where my journey into discovering my Autism began. My ex talking about his ADHD is what got me looking into that and more and more pieces began to click into place. It gave me the courage to tell my therapist “I’m 99.9% sure I’m Autistic and ADHD” and to try a different approach because her methods didn’t seem to be working for me. She said “Come back to me when you actually want help.”
Fortunately, her comment only fuelled me to look further into getting help but this time it needed to be more catered to Autism and ADHD. I called my GP again, and asked to be referred for ASD and ADHD assessments. After several years and much more research later, I grew impatient waiting on an assessment to tell me what I already knew. So, I looked at other ways to get assessed which is how I came across the Right to Choose option. Psychiatry UK were no longer accepting referrals so I went with Clinical Partners.
In October 2023, I filled out two forms; one for ASD and one for ADHD, made a face-to-face appointment with my GP so he can sign my self-referral, and sent it all to Clinical Partners. In February 2024, I had both assessments done and by April 2024 I was diagnosed with both Autism and ADHD. I am fully diagnosed now but it took me YEARS and saying “I am 100% sure I’m Autistic and ADHD” to get to that point.
Just like most people who are self-diagnosed, I didn’t just wake up one day and decide I was Autistic. I spent a long long time reading books, reading articles, and finding out all I can about Autism and ADHD to be so certain. I got a diagnosis because I was privileged enough to have that option. I live in a country where I have free healthcare which also includes ASD assessments, I surpassed waiting lists for assessments because I had myself and my family to support me and advocate for a diagnosis, and I was in an environment where a diagnosis or ‘label’ wouldn’t cause me too much trouble.
Autism and ADHD aren’t new conditions by any means but they are massively unresearched in so many areas. In the 90s, less than 10 years before I was born, Autistic women and girls were still being misdiagnosed with things like Psychosis. Women and girls are less likely to be diagnosed with Autism and their concerns dismissed due to a culmination of reasons; girls are more likely to Mask and hide their traits especially when they don’t fit in to what society believes women should be, so much of what we know about Autism is based off of research done on boys but not girls so girls don’t always fit the traditional profile of Autism, and Autism assessments are less sensitive to traits more commonly present in women and girls.
Sadly, non-white and low-income children are less likely to get a diagnosis or will go through much longer processes than their white or higher-income peers. It’s disappointing and completely unjust but, unfortunately, discrimination still exists in the medical field including getting a diagnosis of Autism. A study once found that, despite the fact that the prevalence of ASD does not differ across ethnic groups, White children were 19% more likely to get a diagnosis of ASD than Black children, and 65% more likely than Latinx children.
Not everyone has access to a diagnosis, whether that be due to ethnicity, cultural background, income/cost, lack of support, or even a misdiagnosis. I only got a diagnosis because I was in a position to get one but, with or without that little piece of paper signed by a psychiatrist, I’d still be Autistic and I’d still need my community’s support. If I wasn’t supported and championed by the Autistic community on social media due to not having a diagnosis, I wouldn’t have learned as much as I have about myself and I wouldn’t have had the confidence to start this blog!
In conclusion: I believe whole-heartedly that self-diagnosis after lots of research is absolutely valid and that, until we live in a better world where health equity has been achieved and ASD in women and girls has been studied as much as ASD in men and boys, the Autistic community has a duty of care to everyone within, official diagnosis or not.
Excellent sources of info:
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