Things to Avoid Saying to an Autistic Person… (Part 1)

‘You don’t seem autistic’- actually, I do seem autistic, because I am autistic, so this is what it seems like. I may not fit the stereotypical cultural image of an autistic person, but a lot of us don’t. This response when someone finds out I am autistic is often delivered in one of two ways- You don’t seem autistic- as in ‘No, you’re not really autistic, I don’t believe you, and you are just saying that to get attention/sympathy/because it’s trendy etc.’ This dismissive response is ableist and extremely upsetting. I do not call myself autistic for any of those reasons. I call myself autistic because I have been diagnosed as such by a psychiatrist, and before I was officially diagnosed I called myself autistic because I spent hundreds (not hyperbole) of hours reading research on autism, listening to podcasts by autistic people and deep-diving into anything and everything I could find about autism. In the light of this information, I then reassessed my entire history through this new lens and discovered that, all of a sudden, my life made sense in a way that it never had before.

My sense of isolation as a child, the feeling different from my peers, my need to try and control my environment. All the sensory sensitivities. The co-occurring health problems- repeated ear infections as a child, the gastro-intestinal issues, sleep problems. The depression and anxiety and the attempts to control them using alcohol. The inability to recognise my own emotions. The need to be constantly playing with something in my hands or tapping my leg. Never understanding the sub-text of a conversation. Never knowing when I was being too ‘blunt’ with what I was saying. The hyperfocus on a new subject every few months, to the exclusion of all other things. The discomfort with eye-contact  (more on that in another post). The difficulty in maintaining a full-time job without regular, extended periods of illness due to exhaustion. The shut-downs, melt-downs and burn-out from trying to function in a society not designed for neurodivergent people. So yes, I do seem autistic.

The other way that this phrase is sometimes used is, you don’t seem autistic, as in – ‘I’m complimenting you, that even though you may be autistic, I’m reassuring you that you don’t come across that way’. The reason that often I may not appear to ‘be autistic’, is that from a very young age I learnt that certain autistic behaviours and ways of being are not acceptable in neurotypical society and as such I learnt to repress them. This subconscious process is known as autistic ‘masking’ or ‘camouflaging’ and it is extremely damaging. Research suggests (Cassidy et al) that autistic people who mask, are at higher risk of lifetime suicidality.

We need to work together to create a society where autistic people feel safe to express themselves without fear of judgment and censure. A society that truly embraces difference. A society where it is safe to ‘seem autistic’ in all its wonderful, varied and unique manifestations.

Cassidy et al (2023) Is camouflaging autistic traits associated with defeat,
entrapment, and lifetime suicidal thoughts? Expanding the Integrated Motivational Volitional Model of Suicide

https://pure.coventry.ac.uk/ws/portalfiles/portal/63985501/Suicide_Life_Threat_Behav_2023_Cassidy_Is_camouflaging_autistic_traits_associated_with_defeat_entrapment_and.pdf