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 a long time in my youth trying to figure out what was ‘wrong’ with me and was even treated for Social Anxiety in university despite feeling like I just didn’t fit that description.
It took a family friend describing her daughter’s autism after her diagnosis, and an ex describing ADHD after his diagnosis for me to realise that maybe I too have autism and ADHD. I spent a long long time reading books, reading articles, and finding out all I can about Autism and ADHD to be so certain. Then, when I was 100% sure, I sought my own diagnosis.
Just like most people who are self-diagnosed, I didn’t just wake up one day and decide I was Autistic after a few relatable TikToks. I meticulously researched it until I was absolutely certain that there was no doubt in my mind that I was living with two neurological conditions that had a substantial impact on my daily living.
I went and 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 by doing the Right to Choose path 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 to be treated differently in a negative way. I got my diagnosis because I had the privilege, the means, and safety to do so.
Autism and ADHD aren’t new conditions by any means but they are massively under-researched in so many areas. Autistic women and girls are still being misdiagnosed with things like Anxiety, Depression, Borderline Personality Disorder, and Psychosis and are less likely to be diagnosed with Autism or ADHD. Often, their concerns and struggles are 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 and ADHD assessments are less sensitive to traits more commonly present in women and more sensitive to traits present in men (things like hyperactivity and disruptive behaviour).
Sadly, racialised 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 and/or ADHD. 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 ADHD, 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 equality 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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