When People Say They 'Never Guessed' I Have Asperger's
“I’d never have guessed!”
This is the most common response I get when I disclose my diagnosis of Asperger’s syndrome. It’s kindly intended, and is a succinct way of saying “I don’t think you’re that weird or annoying, I accept you as you are and I won’t treat you differently now that you’ve told me this.”
It’s a massive compliment to me, because it means I have succeeded in passing for “normal.” Because I was undiagnosed until the age of 24, I invested a lot of effort into fitting in. I just want to go about life unobtrusively and get on with things. So when somebody tells me they’d never have guessed, I feel like my acting skills are rather exemplary!
But there are a few problems with this response too.
It suggests a lack of understanding of what I go through every day. Sometimes it sounds like “your problem can’t really be that bad because I haven’t noticed it.”
It negates the effort I put in to present the socially acceptable version of me that you see.
It says to me that the pain I have put in to get this far must be kept up, or I won’t be accepted as I am now.
It raises expectations: what you see is a huge amount of effort for me, but it looks like anybody else on low power, just doing daily life. Because I often can produce this, it is expected that I can manage it easily. Unfortunately most people’s minimum is sometimes beyond my reach, or only just within it.
When things do go wrong there is often little understanding. Because I usually seem like everybody else, my responses can seem out of proportion and unacceptable.
As well as the personal effects of not being fully understood, having to continually function at a difficult level and feeling invalidated, there are wider societal implications of “I’d never have guessed.”
It reveals a subconscious belief that most people on the autism spectrum are weird or annoying and require different treatment. That if the person had known they would have looked at me differently. The feeling that they are saying “I still like and respect you” or “it’s not that bad” suggests that Asperger’s would naturally cause people not to like or respect someone and that you must be reassured that they won’t react like that.
It suggests either that I have succeeded in hiding something that should be hidden, or that I am making it all up.
I know most people using this phrase mean well and are really trying to say “it’s OK,” but don’t know how to show the support they want to give.
So next time somebody whose condition isn’t readily visible trusts you enough to share their difficulty or disability (I have a feeling this is relevant to disclosure of most disabilities and mental health problems) you could try some of these responses to show your insight:
Thanks for telling me.
Wow, I didn’t realize. That must make things hard for you.
What does that mean for you?
So when… is that part of it? / Gosh, that must make it difficult when… (This can be really validating and show that you have noticed there is something going on, but do be careful to be supportive here rather than pointing out people’s shortcomings!)
How can I support you?
Would you like to tell me more?
With me, it helps if people ask me questions. I know people can be reluctant because they don’t want to make a big deal and want to just be accepting, but for me, it shows they are really interested in understanding and helping me, and it helps because I often want to talk but don’t know what to say or what people want to know about.
So when you tell me you’d never have guessed, half of me is happy to have fooled you into having no idea I am autistic, but half of me regrets all the effort and pain I put in when the main outcome is to perpetuate the work of hiding in the big wide world. Maybe if we all understand each other a bit better, we’ll all have to hide a bit less.
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Thinkstock photo by Fizkes.