Autism Acceptance Week

Clarifying some common misconceptions...

Originally named Autism Awareness Week, the week following World Autism Day is now known as Autism Acceptance Week, with less of a focus on raising awareness and more of a push on inclusion and overcoming prejudice.

This being said, there have been many calls for another name change – from myself included – as “acceptance” implies that autistic people are something of a nuisance to be put up with, rather than valuable and brilliant people to be embraced and celebrated like everybody else.

After Liv’s brilliant blog post on Tuesday for World Autism day, and as an autistic woman involved in various social networks of neurodivergent people, I thought today could be a good opportunity to clarify some common misconceptions and hopefully teach you something new!I

Common Misconceptions

“Autism is a boy’s disorder
though isn’t it?”

Much like Liv, I was late diagnosed with ASD as an adult in Nov 2022. For women and those assigned female at birth, this is very common. There are various reasons for this and I could go on for hours talking about it, but in summary:

• Autism in women, girls and those assigned female at birth often presents differently to the stereotypes. This is because the majority of studies – much like in other areas of medicine – have been focused on (young, white) boys & men.

• Our special interests often tend to fly under the radar and are dismissed as just “girly stuff”
• Autistic women and girls are also notoriously good at “masking” their autistic traits in order to try and blend in with everybody else.

Due to this, autistic women are far more likely to be misdiagnosed with personality disorders, anxiety, depression OCD and/or bipolar disorder. Of course we can (and usually do) have one or more of these conditions alongside autism, but the correct diagnosis and medical understanding is essential to understanding ourselves and accessing the right support & treatment. Oliver McGowan, who all healthcare professionals should now be aware of, is a prime example.

“But everybody is a little bit autistic aren’t they? We’re all on the spectrum somewhere, right?”

Wrong! While Autism is a spectrum disorder, the spectrum exists within the disorder itself. It also isn’t a case of “a little bit autistic” on a straight line up to “severely autistic”. Nobody is “more” or “less” autistic than anybody else, and many autistic people find functioning or severity labels to be harmful.

The spectrum can be better represented as a wheel, like below:

“Seem’s like everybody is autistic these days. People are just diagnosing themselves and I blame TikTok.”

Autism is a relatively newly discovered disorder. The first diagnosis was only made in 1943 – to Donald Triplett, who sadly passed away in June of last year.

Though it may seem as though there has been a huge increase in autistic people in recent years, we have always been here. Nowadays, with the internet and social media, we have better access to information (like short form video content), an increase in representation, and a better general understanding of autism.

This means that people feel more empowered & equipped to advocate for themselves and go to their GPs with confidence. The percentage of autism in the population is likely the same as ever, it’s just that we have better access to testing and a greater understanding of the diagnostic criteria.

“You don’t behave like my nephew, though. You must have Asperges Syndrome, not Autism”

ASD, as in the name, is a spectrum disorder. Like in the diagram above, autistic people’s traits can present in many different ways. Aspergers is encompassed within ASD, and is a term that we are gradually leaving behind – and with good reason.

Hans Asperger was an Austrian doctor during 2^nd World War, heavily involved in eugenics under the Nazi regime – sending autistic children to the “euthanasia” program in Vienna. His diagnosis of these children was largely rooted in whether or not they were capable of joining Hitler Youth and whether they fitted into the Nazi Party’s idea of “the organism of the social community”. More information on this can be found here.

“Oh you were diagnosed with Autism? I’m so sorry”

Please don’t apologise! In our community, it is pretty standard to actually congratulate others when they’re diagnosed. This is largely due to the end of the long and stressful process leading up to it, but also because the diagnosis can be a really positive thing for many.

After my diagnosis, my first feeling was relief. Finally, I had the answer to so many questions I’d been asking myself for as long as I could remember.

• Why don’t I fit in with the other kids at school?
• Why do I feel like I’m the only person who hasn’t been given the instruction book on socialising?
• Why is the “uni student lifestyle” so difficult for me to keep up with?
• Why am I so tired? So depressed? So anxious?
• Why is going into the office for work every day so exhausting, when everyone else manages it fine?

Well, now I know! And now, I can support myself in ways I never knew I needed. It has been one of the most positive developments of my life so far.

Post Diagnosis Thoughts

I’d heard a lot of people talk about an intense feeling of grief, after their diagnosis. I never understood this, until it happened. While I was, and am, so happy to have my diagnosis and my answers – it prompted more questions about how different my life could have been if only I had known. If only I was diagnosed as a child.

• Could I have done so much better at school and Uni if I had the right tools and access to support I needed?

• Might my parents, teachers and colleagues have been kinder, more understanding and patient with me?
• Would I have struggled so badly with my mental health for so many years if I understood myself and my needs from the get go?

I’ll never know the answers to these questions, and in a sense I do grieve for the childhood and early adulthood I could have had. But, I also recognize that I am one of the lucky ones. I live in a country where healthcare is accessible, and where most people have at least a base level understanding of Autism. I have my diagnosis now, I understand myself better, I give myself grace when I need it, and I advocate for those who haven’t been as fortunate to be diagnosed in their 20s.

Thousands of people up and down the country, in their 30s, 40s, 50s and older, are still wondering why they feel different – why they just can’t seem to fit in. So, this week (and every other week), I hope the awareness continues, understanding grows, and access to the proper healthcare and social support will increase.

Of course I can largely only speak for my own experiences, but if you have any questions please do feel free to pop it in the comments or message me directly on teams/slack. Autism itself has become one of my special interests, so I'm always happy to chat or point you in the direction of some information resources and content creators too.