(I don’t actually like the musical. I find the subject matter somewhat uncomfortable and it possibly contains the sleaziest song in musical theatre.)
The song itself is about being caught between two worlds and where to find your own place. Which has a rather obvious relevance to where I find myself at the moment in relation to autism. I find myself relating to the last three lines in particular:
I don’t belong where the crowds are.
I don’t belong where the clouds are.
Then where do I belong?
As I read more, and reflect more, it’s clear that I don’t belong with the ‘crowds’ / neurotypical community. Trying to fit in is becoming more and more challenging as I become more confident with my own identity as a person with autism. And I doubt I will ever be fully accepted or understood by people who don’t share my condition, simply because my experience and the way I see the world is so different. It’s a two way street: I don’t understand them either.
(And talking about understanding, I’m getting increasingly annoyed at the amount of rubbish online. For instance, I recently looked at a website claiming to have expertise in helping people on the autistic spectrum. They suggested that an appropriate career for someone with Asperger’s Syndrome would be telemarketing. From an entirely unscientific sample of one person (me!), working on a call centre doesn’t end well… There’s an entire comedy script in there somewhere. Maybe I should write it.)
But I also don’t feel that I belong with the ‘clouds’ / autistic community. Although I find reading some blogs helpful in understanding myself, I struggle to engage with the online communities much of the time. I realise that online communities in general are dominated by a few posters and that they are pretty much self-selecting. But I find that many of the communities tend to perpetuate stereotypes and I disagree / don’t identify with many of the prevailing attitudes:
1. Autistic = good; neurotypical = bad. Very much ‘them v. us’ situation.
2. Autistic = special skills
3. Autistic = hate myself
I completely identify with this, to be fair! However, I’m also aware that – for me at least – this is more of a psychological issue that needs to be addressed rather than a core part of being autistic.
4. Autistic = need to pretend to be normal / neurotypical
For me, a key part of coming to terms with my condition is accepting that I have differences. That sometimes I may need different treatment / handling than someone without autism. And as one of the key things that led to me having a mental health crisis last year was trying and failing to pretend to be ‘normal’, I’m not keen to go back to a place where I have to hide who I am for the comfort of others.
In terms of the online communities, in particular, I’m increasingly uncomfortable with the prevalence of posters who are self-diagnosed and yet try to act as the arbiters of how people on the autistic spectrum should think, feel and act (I haven’t noticed this being an issue with people who have been formally diagnosed). I’m certainly not saying that self-diagnosis means that someone isn’t autistic. But I wonder whether in some cases the challenges that some (by no means all) of the self-diagnosed posters face are more to do with psychological issues than with autism.
I also don’t feel the need to identify with others based solely on a condition that I have. The person I am has been shaped by many things; some of which are to do with autism (and living undiagnosed for years), others which are nothing to do with the condition. It’s a bit like I wouldn’t feel the need to join an eye colour club to connect with people who share my eye colour. Although having said that, there may be a gap in the market for people like me (the ‘have-no-clue-what-colour-eyes-they-have-so-let’s-just-say-grey’ club perhaps?)…
I’m being slightly facetious. But, honestly, I feel that I’m as likely (or unlikely) to have things in common with someone based on eye colour as I am with someone based on the fact that both they and I are autistic. We may get on. We may not.
Where there are specific challenges and issues, then it’s helpful to hear how other people deal with similar issues and what strategies they use. But I don’t find that this is the focus online, apart from some blogs. The communities are more about forging a shared identity about what it means to be autistic – but as mentioned above, I don’t personally agree with their conclusions.
So, where does that leave me? Where do I belong?
I simply don’t know.