Recognize that title?
I suppose this blog is for both audiences -autistic and neurotypical – in some ways.
My first response was ‘What I am supposed to look like, then? Green with purple tentacles maybe?’
One member of our group pointed out that we’re all supposed to be ‘mute headbangers’ all of the time.
I don’t know about anyone else, but it makes me feel both frustrated and insecure (YESS!! I’ve managed to identify the feelings!). Frustrated because of the lack of understanding, and insecure because the world is already incomprehensible, and being virtually accused of faking a disorder is even more confusing.
Even though it has slowly seeped into the collective consciousness that not all autists are Rain Man, there is still the expectation of us acting like him.
But the autism spectrum is wide and varied. Symptoms and behaviour vary wildly from one person to the next, depending on where on the spectrum one is, IQ, culture, upbringing, education, gender…and so on. I can look normal a lot of the time. I did look relatively normal for most of my life, but at the cost of severe depression and anxiety that made my life unbearable. I am a woman, of average intelligence, reasonably well-educated, so I have developed coping habits on my own. Not all of them helpful or healthy, so unlearning and relearning is part of what I do now.
Imagine, for a moment, that the brain is a box, where everything incoming is dropped. There is someone in charge of deciding what needs to go in, and what doesn’t. In most people that box is of rubber, and when too many things are dropped in, the box will strain and stretch, but unless the stress is severe, it will not break, and rest (taking out most of the content) will restore it to normal.
Not so with autism. The box is smaller to begin with, and of cardboard. Drop in too many things (and too many things GET dropped in because there is NO person in charge of selection, and if there is, he or she pops off for a coffee break with alarming frequency) and the box will tear, spilling everything.
That makes for a lot of cleanup, discarding whatever items were in, and getting another box up and running. This takes TIME.
No, the box will never be flexible. It MAY grow a little bit bigger, but mostly we just learn to avoid situations in which a lot of stuff is dropped in all at once.
So, why do we not ‘look autistic’ – whatever that might mean?
Most likely because what people think autism should ‘look like’ is very limited and very skewed – maybe 0.01% of autists exhibit such behaviour all of the time.
Also, when the box in our head is nice and empty, it will allow the dropping in of stuff. And we can do something we find difficult. No one sees the energy it costs us, or the time before and after we need to empty out the box, but for the time being, we may act reasonably normal. Neurotypicals also have their good and bad days, times where they are fed up and tired, times where they are energetic and focused, and it’s the same for us.
The best response I’ve found to this so far is “Thank you. May I respond by saying that I think you don’t look normal?”
Another good one is ‘but I thought all autists are retarded?’
In this case, try: “Well, thank you. Please clarify whether your question means you think I am retarded, you think I do not have autism, or that you’ve failed to obtain accurate information before approaching the subject, in which case I will be happy to provide you with several outstanding books or websites where you can seek to remedy this deficit.”
Just because we have autism, it doesn’t mean we are automatically wrong about everything. Our opinions deserve to be heard just as much. And if we state that something is causing us problems, then something is causing us problems, it’s as simple as that.
Although I am never in favour of the whole ‘minority’ mentality, in this case it is true that women are confronted with these misconceptions even more than men. There are less women with a diagnosis of autism, and women as a whole are slightly better in hiding and adapting. Our problems with autism tend to turn inside more. It is quite common for women to first be treated for depression and anxiety.
So, except for collecting some witty/sharp remarks to try and get people to think about what they’ve just said, what can we do?
Again – explain. Or have someone explain. Or give people a book. Assure people that we generally know when something is difficult. And that despite our difficulties with social interaction, it IS possible to talk to us and acquire information. No, we can’t speak for every single person on the spectrum, but if anyone wants to know what autism is like, chances are that speaking to someone on the spectrum yields more results than talking to neurotypicals, even though we’re very much not all the same.
That is, after all, the reason for this blog – to find a way to function in church and grow spiritually.
I am afraid that a lot of the time we will just have to put up with ignorant remarks and disbelief. Remember that neurotypicals have this overactive secretary discarding half the incoming information, so they might actually not realize what it is that causes us problems. It is unreasonable to expect them to be able to do that. But it IS reasonable to expect them to *believe* us when we say something is a problem.
We are human. If that cannot be respected, then perhaps one day we will all have dress up in a purple tentacle suit and paint ourselves green.