I’ve gotten the best information and solace from other autistic people. We are the experts, as far as I’m concerned. Just as even the most sensitive man cannot be an expert on what it’s like to be a woman, so even the most sensitive neuro-typical person cannot be an expert on what it’s like to be autistic. It’s simple neurology. It can’t be done.

I’ve wandered around for years thinking something was wrong because of how I view things and people, how I feel and so on. I thought for quite a while that I was OCD and a bit mentally ill or something.

As I grew up I was bright, verbose and emotionally in real difficulties. I had few friends (actually none) and even now as an adult I’ve never managed more than 1 or 2 at a time. I’ve managed to have 2 friends now for 4 and 6 years but I’m in my 30s and have to work at contact.

Problem is being so hurt by other people and not understanding them left me feeling it was all my fault and led to some spectacular melt downs. So in my early 20s I began to learn how to mask what was going on inside. I now feel like a master chess player when dealing with people as I deploy all my strategies to understand and second guess people so I don’t get hurt. Trouble is my learned banter responses often miss the mark but the people around me just assume I’m a bit eccentric. I still desperately want people to like me but want to run away and hide as well.

I work in special needs education and always thought one or two too many of the ASD traits fitted me but not entirely, even AS wasn’t spot on. I can socialise, I can empathise, I get jokes and sarcasm. BUT it feels analytically applied, like the chess game I alluded to. So I took a couple of on line tests and came back with quite highish scores (e.g. 164/200).

Many of the presentations of ASD/AS seem to fit, routines I get distressed if I can’t follow, overwhelming emotions or none at all, struggling to read other people, meltdowns that include lashing out at inaimate objects like a four year old, don’t like dealing with people. My wife even says I have a work voice/persona which I kind of put on compared to the real me at home. I feel like I do this with friends and to an extent even her. Loneliness, what is it they say about a lack of appreciation of layered language?

Now my closest friends seem to think I’m off my trolley. My wife thinks there is something in it but after so long learning to cope and mask it it’s hard to spot. My main strategy is being detached to the point where I’m actually inside looking at someone else running my body for me so I don’t need to deal with people, he does it for me.

When I work with ASD pupils we look to skill them in coping strategies and communication skills. We don’t really think about helping them with learning about themselves and being at peace.

So what happens if you learn all this coping strategies so you can ‘pass’ in neuro society before you realise what might be wrong??? How then do you know what you are anymore?

Does anyone have resonance with this? Why is it the more blogs I read from autistic people the more it sounds like the ‘symptoms’ list only covers a small proportion of the behaviours? For a group of people whom are supposed to have problems with feelings seems like we have them too deeply to always cope with.

For me now I have a journey to find out where I fit into this equation. I’ve felt lost and alone all my life living inside here, maybe this time I’ll find an answer.

Jennifer G: The same kind of “backseat driving” has happened with Bob and me–with me turning over a task to him and then backseat driving as he attempts to do it. Thanks for putting it into words.

Saja: Amanda Baggs’ video really broke open the whole question of high versus low functioning for me. It’s an amazing thing to watch. I wonder if the “high-moderate-low” hierarchy is simply reflective of the way that the larger world likes to put everything into rank order, and that we’ve bought into it in our quest to appear NT.

Jennifer: I don’t know how other Aspies are, but some of my routines are extremely important, and others come and go. It’s really individual. Consult your local Aspie.

I would go a step further….I think that there is even an autisitic component in the neurology of every NT’er, to a lesser or greater degree.

I wouldn’t rule out if some degree of autism can be out-grown, but whether it’s a matter of time, social conditioning, or something else.

What April said about routine is one of those things I have been wondering about too….I wonder whether routine is really as good for an Aspie as people think. Of course everybody has some degree of routine, such as waking, having breakfast, and dressing…..but do those things always have to be in the same order, for an Aspie to feel comfortable?

Can challenging the comfort zone be a good thing too?

Thanks for another fine entry. Every day I spend with your words is a day I get stronger.

Rachel – you’re absolutely right, though I’d never thought about it this clearly, I suppose because trying to pass for NT has been my goal for most of my life (though of course I didn’t call it that before I knew I was autistic). Whether someone is “high” or “low” functioning is all about how NTs percieve that person to operate in the world, relative to how an average NT operates. Which is why so many kids start out lower and end up higher, or “outgrow” their diagnoses. Pffft. Outgrow your neurology? I think not. Get better and better at practiced NT skills? Yes.

I’ve actually thought quite a bit the past week or two about Amanda Baggs, who is considered “low” functioning. She doesn’t speak with her own mouth, and she does lots of autisticky flapping and moving and noisemaking. But she’s a bright, articulate woman, and quite an activist. I’m sure, before she got her speech simulator (think Stephen Hawking) and internet access, that people thought she was retarded, unreachable, largely “not there,” because she didn’t communicate or behave in typical ways. I’m sure *I* would have thought the same thing if I’d just seen her somewhere, or seen her “my native language” video (on YouTube) without the accompanying text. But I’d have been so incredibly wrong.

Of course, now that she’s got ways to communicate with the outside world that most people can relate to, her diagnosis of “low” functioning is considered “inaccurate.” While nothing’s changed about *her*.

And you are spot-on about what “high-functioning” means. It is a definition of how a person relates to the NT world, and not how the person is on the inside. It’s not meaningless, but I think too often it is an excuse to assume that someone “high-functioning” is less in need of support/services than someone less “high-functioning”, which is not necessarily true. The cost of functioning in the NT world can be high, as you and I both know, and it carries its own problems.