, , ,

I sometimes discuss autism with people at work. I don’t discuss it much anywhere else because, to be honest, I don’t interact with many people outside of work.

And I’ve noticed that I only mention it when I’m feeling OK, and I talk about it in a very neutral manner. I might describe sensory overload, or my synaesthesia-type reaction to colour.

What I don’t do is discuss the bad stuff.

I never bring up the subject when I’m overloaded or close to meltdown. I don’t bring it up when I need people to do things to make the environment easier for me to function in. I never say that I need help, or what that help is.

For the last few weeks I’ve been wondering why that is. And I’ve figured it out.

Asking for help is attention seeking. it’s saying that I’m special, or that I’m weak, or that I’m defective.

Letting the people around me know that there are issues I can’t overcome without help will do one of two things:

– Get me pigeonholed as different, as not quite human, as less than a real person

– Label me as demanding, as a problem, as someone who thinks her needs take priority.

And I think this is a big autie issue, and probably similar for anyone with a ‘hidden’ neurological disability. (Hint: it’s only hidden because everyone around us demands that we hide it and embark on the lifelong charade of Pretending to be Normal.)

If you’re paraplegic, there is no social pressure to get out of your wheelchair and walk (excluding those in some religious communities). The same goes for many other disabilities. And though our world isn’t exactly welcoming to those who negotiate it on wheels, most people aren’t going to insist that a paraplegic use the stairs, and accuse them of not trying hard enough when they insist on taking a lift.

Now, when you think about it, a paraplegic could get up the stairs. They could use their hands, or their elbows, and simply drag themselves up, causing inconvenience to everyone around them and a lot of pain, stress and inconvenience to themselves.

But that would be terrible, wouldn’t it? You’d see a disabled person suffering – hell, you’d have to step over them in order to get up the stairs yourself, and that’s annoying, and untidy, and just not very nice for all involved. So we’re probably in agreement that lifts (elevators) are a Good Thing. Stuff that helps disabled people is a Good Thing.

Except when you’re being asked to change your own behaviour, or forgo something you want. For example:

– Having the radio or television on in a work environment (including staff tea rooms, where most people, including autistics, expect to have a break).

– touching or poking someone without warning, regardless of being told that you’re causing distress.

– changing rosters or other routines at short notice

– shouting or making sudden loud noises

– wearing strong perfume

– demanding eye contact during all conversations

– refusing to handle complex issues in writing

– treating stimming as an offense

– using ableist language (crazy/moron/retard/hysterical/autistic)

Because autism is primarily a sensory processing and communication issue, most of the things that cause problems are on the interface between autistic and non-autistic people. And, like a paraplegic being unable to walk, there is little an autistic person can do to change their neurology. Just as there are lifts for those in wheelchairs, and hearing loops for the hearing-impaired, there has to be some accomodation for us. It’s unfortunate that this requires you to do a bit more than simply paying charities or taxes to be used to fund ramps, and disabled toilets, and guide dogs. This time you’re actually going to have to make some small personal adjustments in how you interact with some people, so that you don’t cause stress and anxiety and meltdowns.

When was the last time you felt so stressed that you literally hit your head against a wall, sobbing? Is that the kind of stress you think it’s OK to inflict on another person?

You can cling to your mantra of you could try harder all you want, but the fact is, we’re trying hard enough already. 95% of the effort is on our side.

Is the other 5% too much to ask?