I think a lot Autistic people have been told one or more of these things at some point in their life:
‘You don’t look Autistic’
‘It’s pretty mild though isn’t it?’
‘I have an (insert relative here) who is actually Autistic’.
These statements usually betray a level of ignorance around Autism and they can be incredibly hurtful. This sort of thing is basically people who don’t understand Autism defining our identity.
I will unpack two of these sorts of statements which I have heard said about me and which were hurtful and left me angry and upset.
The first one is “You shouldn’t say you are Autistic. It’s pretty mild, isn’t it.”
This statement demonstrates a complete lack of understanding of both me and other Autistic people and the challenges we can face. Before I respond on my behalf, I shall respond on behalf of a friend and her two sons. Both boys are on the spectrum. One does not use much spoken language and has quite high support needs in terms of daily life. The other boy is very verbally articulate and outwardly confident and engaged in life. My friend says that people almost always put too low expectations on one child and too high expectations on the other. The assumption of ‘mild’ Autism fails to understand the challenges people with less obvious support needs face every day.
Moving onto my own experience, the ‘mild’ label is highly unhelpful. If you look at me now you will see somebody who is outwardly successful. To some people my Autism probably seems more of a reason for my work helping others than a difficulty for me. The fact is I have built my strategies and wisdom around managing my struggles over many years.
As somebody who did not have a diagnosis as a child, the fact that I looked largely like a ‘typical’ girl but wasn’t, resulted in endless bullying. I looked like a non-autistic person so school kids had an expectation that I would behave as such. When I didn’t, they responded with confusion and often active hostility. I was probably more ‘weird’ to them than someone who was more obviously in need of support would have been.
The bullying I experienced led to all sorts of other nasties – it stripped away my self esteem and self confidence. It left me incredibly negatively focussed and actively seeking out bad things well into my adulthood. The other thing I suffered from continuously for many years was sexual violence. Predators apparently saw me as fair game and I was haunted by predatory men for many years. I was naive and didn’t understand the non-verbal cues around sexual behaviour, So while most people would see that an interaction was headed towards sexual activity, I did not. I would find myself in men’s bedrooms having no idea how I got there or how to escape. I felt like I had a sign on my head saying ‘please abuse me.’
As a person with ‘mild’ Autism and no diagnosis there were no services for me at all. I was expected to be able to manage the world with no assistance. All these things conspired to make my early adult years totally disastrous. It took me years to learn to manage being who I am and where I fit in the world. I was in a self destructive space for many years and I am very fortunate that I didn’t not die. So when somebody who I barely know suggests my Autism is ‘too mild’ to be considered an issue, you can understand why I get quite upset and immediately set them straight.
The second comment which has cause me concern is “You don’t have to say you are Autistic, you could pass as ‘normal’.” I find this incredibly insulting, especially if the person knows about my work in Autism advocacy. It suggests that being Autistic is somehow shameful or something I would want to hide. I do not want to be neurotypical. I am happy to be my Autistic self. I am proud of who I am as an Autistic woman.
My other concern with this statement is that if somebody says that to me, they probably say similar things to other people, who may not be as confident in their Autistic identity as I am. This sort of statement might make them feel bad about being Autistic. Another concern with this attitude is that many Autistic people actually do try to look and seem more neurotypical often as a means of surviving in a hostile world. I would like a world where people don’t feel the need to hide their Autism and try to pass as ‘normal.’ I did this for many years and it stripped away my own identity. It betrayed my lack of confidence in myself, and that I hated myself. Comments which suggest Autism is something to hide or be ashamed of are very counterproductive.
Ignorance around Autism can be damaging and invalidating, We need to work to change attitudes so that Autistic identity is not defined by those who barely know us asserting their assumptions and expectations on us. Autistic identity needs to be shaped by Autistic individuals.