Telling people that you’re autistic is a big deal. Sharing my diagnosis means sharing something pretty personal and opening myself up to potential judgement which makes me anxious. On the other hand if I don’t tell then I might be judged for the way I behave. So I’m generally fairly open about my autism in order to gain acceptance and understanding. Plus as it’s a relatively new diagnosis for me I’m pretty obsessed with autism at the moment (an autistic person, obsessed, surely not) so it tends to come up in conversation often.
In my experience of telling people I have encountered various versions of the following responses.
“Oh, gosh, really? You don’t seem autistic, you can talk/are not rocking/can make eye contact. It must be very mild autism”
Having analysed it I think this response is generally meant in a kind and reassuring way. People want to reassure you that you are ‘normal’ (whatever the heck that is) and that you don’t stand out.
Unfortunately it feels a little bit dismissive, and belittles the experiences those of us with autism, who have significant enough issues to warrant a diagnosis. Appearing ‘normal’ in no way means I’m not significantly affected by being autistic.
“So I’m autistic”
“Oh really, I think I might be a little bit autistic as I really like routines/am a neat freak/sometimes say the wrong thing, after all everyone’s on the spectrum aren’t they.”
To be honest I find this response pretty irritating. I get that people want to normalise my situation and reassure me but no not everyone is on the spectrum. I recently attended a talk with Steve Silberman, author of Neurotribes, and he gave the perfect response to this statement and I’ll be using it to explain why not from now on.
So here it is;
Basically autistic traits are human traits and can be experienced to a greater or lesser degree by a large percentage of humanity. However experiencing these traits to a degree whereby it interferes with day to day life and you need significant support to cope is a wholly different matter and it’s these people who need a diagnosis and are on the spectrum.
“Really? What does that mean for you?” or “Really? I don’t really know much about autism, tell me about it”
Perfect. I like it when I get this kind of response, when a person tries to better understand my situation or autism generally. I can explain my situation and what might make things a little easier for me.
I’ve found telling people I’m autistic really useful in some situations. For example when I needed dental work it helped to explain my extreme anxiety about the treatment and helped the dentist to reassure me and help me undergo the treatment needed. Equally telling my friends and family has helped them to understand me better and treat me in a way which helps me to feel calm and happy.
So on the whole I’d say being open about my autism has been a positive experience.