Why generalists need to understand autism

I don’t want to feel upset by Len but I do.  I am not sure if it can be helped.  Len is a nice man and is also an ally working towards autism acceptance.  He is employed as an autism support worker and facilitated a self-advocacy group for autistic adults. He told me he loved working with this group and felt he really understood them.  “They told me that they were really scared about meeting other people, they felt they were being judged and didn’t know what to say.   I feel like that too about meeting people – I suppose we are all somewhere on the spectrum”   I think in saying this Len felt he was expressing empathy and showing that he understood and identified with an autistic sensibility.  I was aware of this but the remark still upset me, in fact I was so upset that I was unable to discuss the issue  and instead just muttered something  nondescript that probably sounded appreciative to him. 

I know I am not the only autistic who feels frustrated when I hear this things like “I feel like that too”…….”that is normal, we all feel that way”………” everyone has a bit of autism”. I also know they are often said by well-meaning people who want to support us so it might be worth explaining my reaction. 

First off I should say that I believe we are all part of the human constellation and autistic traits are human traits, I suspect Len was trying to communicate to me that he shared this belief.  But the bit that he didn’t seem to understand is that his social anxiety is different from autistic social anxiety, for the simple reason that autistics’ social anxiety or even social terror is entirely rational. 

Typically the largest part of social communication is non-verbal – autistic people do not understand this communication.  We just do not have the neurological equipment to decode and deal with social situations in a typical way; we fear entering territory that often proves treacherous for us. Comparing ordinary anxiety about social situations to autistic social anxiety is like comparing my concern about swimming across a river (I am a good swimmer)  to that of a poor swimmer or non-swimmer needing to cross the same river.  We  are facing the same situation but our ability to deal with it is vastly different.  

I might be anxious because of the currents and the fact I don’t know this particular river, I might not make it because of conditions beyond my control; but I do have the skills to cross given reasonable conditions and a history of successful river crossings. However, a non-swimmer without outside help is likely to drown regardless of the conditions – they don’t have the equipment for the task.  Their anxiety is of a different order of magnitude to my anxiety, their anxiety is grounded in the likelihood of a bad outcome, whereas my anxiety is priming me to be careful and achieve the best possible outcome.  

So while I appreciate efforts to empathise with the autistic reality they need to be grounded in knowledge of just how differently we might be experiencing the world. Maybe if I had expressed to Len how upset I was with his remark he would have had an experience all too familiar to many autistics – that of trying to interact positively with someone only to find that you have said something that has the opposite effect to what you intended.  Paradoxically in this case Len in trying to get close to one autistic sensibility mirrored Autistic experience demonstrating what my friend and colleague Damian Milton calls the Double Empathy Problem