Another reason I suspect many on the spectrum reject the ‘label’ of autism, is because of the association with ‘disability’. Much of the little there is about autism ‘out there’ insists on calling it a ‘crippling disability’ – and few like to think of themselves as ‘crippled’, even if they have major difficulties with many areas of life. Their image of ‘crippled’ or ‘disabled’ is perhaps of someone drooling in a wheelchair, having to be looked after by others on a 24/7 basis. Or perhaps a blind or deaf person, an intellectually handicapped one, etc… “Well, I’m not like THAT!” they tell themselves.
It doesn’t help that the ‘disabled’ are often treated as though they are all intellectually handicapped, or incompetent to manage their own lives. For instance, recently two men here in NZ were not allowed to take the plane seats they had booked – because they were in wheelchairs. Not because there was no room for the chairs; rather, they were told, the airline had a policy of not allowing any disabled to fly without their ‘carers’. These were grown men, who simply happened to be paralysed from the waist down. They could take care of their own needs, and in fact were on their way to compete in a disabled sports tournament. They didn’t need ‘carers’, they told the airline staff indignantly, to no avail. They still weren’t allowed to fly. (The airline did later apologise, I must add here, though only after the men contacted the media.)
I have Chronic Fatigue Syndrome, a physical disability, and have had similar things happen to me. I have been patronised and talked down to, especially during the worst phases of my illness, till I sometimes felt like saying “it’s my body that’s weak, not my brain!!” That at times I felt I was probably more intelligent than them, made it even more insufferable.
In fact the disabled often seem to be treated as though they aren’t fully ‘human’, with the same rights and dignity as the ‘normals’. (Does this begin to sound familiar to anyone on the spectrum?) While their physical needs are better taken care of now than they used to be – eg ramp access to public buildings, disabled toilets - their psychological needs are still often brushed aside, at least by the general public. It’s presumed they should be ‘grateful’ and not complain if someone talks down to them, or literally over their head (“Does she need someone to take her to the toilet?”).
So ‘disabled’ is seen as ‘lesser than, weak, inferior’, and who would want to identify with that? This sometimes extends to not wanting to identify even with those on the spectrum who seem to be more obviously ‘disabled’, ie the ‘non-verbal’, non-toilet-trained adolescent or young adult, or anyone else obviously more ‘severely’ autistic or ‘low-functioning’. Some aspies or HFAs seem to draw a line between ‘them’ and ‘us’ – the ones who can ‘function’ in the world (albeit with difficulty), the ones who can go to school, hold down a job, start a family, hold a conversation (of sorts), etc, etc. “We’re not like them either”, seems to be the thought/feeling. (I would hasten to add here that not ALL ‘higher functioning’ autistics see things this way.)
But that line is proving more and more of an artificial one, as more and more of those once thought ‘severely autistic’ reveal themselves as capable of communication, even if it’s only on a computer keyboard or similar device. Moreover, my feeling is that the difference between ‘them’ and ‘us’ is one of degree, not kind. To draw such a line is to abandon our ‘less-able-to-pass-for-normal’ brothers and sisters. They need us, and we need them. We are all in the same boat, and what affects one ‘type’ of autistic, affects us all.
Moreover, I don’t feel there is any shame in admitting that we are ‘disabled’ in some areas of our lives. In fact, to be autistic means being disabled, at least to some degree, and in some areas of our lives. I would certainly admit to being ‘socially disabled’, and that this affects my ability to have relationships, make friends of anyone not also on the spectrum, and to relate to co-workers. I also have had major difficulties learning what are now termed ‘life skills’, which has also handicapped me in many employment situations, and I struggled for many years with ‘executive dysfunction’, until I learnt some pretty rigid ways of organising myself and my daily routines. I don’t feel ‘lesser than’, in saying this, nor do I feel my intelligence is demeaned, or my essential ‘personhood’ somehow diminished. I’m still ‘me’, and as worthy of respect as anyone else. As are you all, including those of us who are labelled ‘lower-functioning’, and as are all those people in wheelchairs, or with intellectual disabilities, or blind, or deaf, etc, etc. And the ‘normal’ people too.
We are all equal in our essential humanity, all worthy of respect as people, whatever our individual diagnoses or difficulties – or lack of them. It’s a point worth remembering.