Tuesday, March 6, 2012
Autism - The Politics of Hate and Cure
This is bound to be a controversial post and I'll probably offend at least a few people out there. It's not my intention but it's probably inevitable so before I begin, I want to apologize - it's nothing personal okay.
At the same time, I'll admit that I'm not entirely qualified to say what I'll be saying here. My kids can use the toilet though I often say that my boys are stormtroopers - amazing shooters who seem to hit everything except the target. I understand that there are other people out there with far less fortunate circumstances and I'm aware that I haven't walked in their shoes.
Like most of you, I'm still learning about autism politics and I make mistakes too. I'm sure I'll be picked up on these in the comments. It's not my intention to sensationalise things or to "close the book on the subject" - simply to tell you what I've learned so far. I'm sure that it will be as much a learning experience for me as it will be for my readers.
I had intended to write neutrally about this topic but unfortunately, I can't find a middle ground.
Finally, one more apology. I'm sorry for the length of this piece. Normally I'd split something like this across more than one post but in this case, I feel it needs to be kept together.
Thinking about things in different terms
I often feel that thinking about autism using different terms is useful. One of the easiest analogies to understand is racism - so I guess that this is the first group that I'm going to insult (sorry).
I'm going to start by using white people as my "autistic group" because it's less commonly done that way and maybe I'll insult less people - I don't know.
If we pretend that it's a racist thing and we say that we want to "cure" white people to make everybody "black" since the world's population is predominantly non-white. Does anyone see a problem with that? I certainly do - it sounds very extremist and it's clearly wrong.
This is the same as suggesting that people with autism should be cured. I'm aware that some of my readers might not agree. That's okay. It's a free world and you can think what you like but please read on and give me a chance to explain.
Staying with our analogy, there are of course, things we might want to change but they fall into several categories and not all of them are fair. I'll be discussing three types of change in this post.
Perhaps we want our white people to have better singing voices because it seems that black people are generally much better singers than whites. Is it fair to want this? Is it necessary? In this case, I don't think that it is. It's a want rather than a need and it's similar to the parent who wants their non-verbal autistic child to become an orator or to "follow in their footsteps".
It's a problem which occurs when people can't let go of their preconceived ideas of what their children are and it's bordering on "lack of acceptance".
There is little difference between a parent not accepting a child who simply can't do something and a parent who won't accept their child's gender. There are countries where children of the "wrong" gender are murdered or given away. We see those actions as wrong so why can't we see the lack of acceptance for what it is?
Critical Needs Change
The second reason that you might want to change people is to take care of critical needs.
Continuing our racial example, suppose we live in a hot country with little shelter and we wish that our fair-skinned child wasn't so susceptible to sunburn. Note; we don't wish for her to be black, just safer.
We accept that we can't change the child and we do our best to counter the problem with suntan lotion, a hat and dark glasses.
This analogy is a little like the use of therapy and supports to assist in developing a vital skill such as toilet training. We want our child to toilet on their own because it's safer and more hygienic.
We're not wanting them to be "normal", just more capable. I think that this is acceptable because you're accepting the child and their limitations and your intervention is directed towards safety and self-sufficiency, not "normalisation".
How words like "hate" and "cure" don't help anyone.
There are parents out there who say that they hate "autism". I can see how it presents a large target but actually, it's not "autism" itself that you hate. It's the inconvenience, embarrasment, suffering and just plain hard work associated with some parts of the autistic condition that you hate.
It would be better if we could be more specific about the things we hate. Clearly we hate having to clean up after a toileting accident for example. Make it clear though, it's about US, the parents, not the children.
This is a good step forward but making a "hate list" of specific things will only carry you so far and really it's better to let go of the hate and "accept the things you cannot change". If you don't do this, things will simply build up until you explode or are overcome by depression.
The list is still an important part though because it tells you what you should work on first. The next step is to see what you can do to modify the behaviour.
You see, if you simply "hate autism" then your only option is to fund a possible cure or worse, to try dangerous therapies (brain surgery and chelation) in an attempt to eradicate what you see as the problem.
Personally, I don't believe that there will be a cure in my lifetime. In fact, short of some kind of thoroughly evil sterilisation process, I don't think there will be a "cure" at all.
Anyway, just to be completely clear; even if a working cure was developed today, it would probably be a decade before it passed enough clinical trials to be approved for general use.
So instead of throwing money into a lost cause, let's look at what our money can achieve today. Better support, better facilities and happy memories. Because we have a "hate list" we can turn it into a wish list. Let's look at what we don't like and see if we can make some progress.
For example, you might find that lack of communication is a barrier. You might spend money on speech therapy, signing assistance, social story charts or an iPad. These are things that you can do for your children today. They will provide at least some benefit and probably happiness too.
Back to our reasons for changing people; the third case might be easier for some people to understand if the black and white roles are reversed so if need be, swap them in your head.
This time, we're not talking about "changing our children", we're talking about changing other people. It's something that the autism advocates are constantly talking about and it's a very worthwhile cause.
Let's imagine that social conditions are far better for people of one colour than another. That perhaps one race has access to better schools or that there are areas that the other race is not permitted to go. Maybe there's also financial inequality.
We've seen all this before in our history and we know that it was wrong. I think that in a lot of ways it still continues today. We have a lot of inequality of circumstance. People don't choose to be born one colour or another, they don't choose the religion that they grow up in and they don't choose their initial economic circumstances. It's therefore unfair to judge them or to oppress them based on the circumstances of their birth. The same applies to people on the spectrum and indeed all people who were born with conditions which differentiate them from "normality".
Much of the discomfort of people with autism comes from society. As a society, we point out different people and we exclude people on the basis of appearance or abilty.
Consider the sensory child who hops into a crowded elevator filled with loud, smelly, squishy people and with piped music and movement for added discomfort. As parents, we take some of these things for granted and sometimes don't think about how they could affect our children. We're only human and we make mistakes.
What compounds these problems however is society. The people in the elevator who view your child's meltdown with distaste and mutter things about their behaviour; who tell you or others loudly that the child needs a good hard smack or that, heaven forbid, reach down and give your child a sharp poke with a finger, a stern gaze and a harsh voice.
Even worse, when you explain that your child has autism, these people either deny the diagnosis or back away as if there's a chance it could be catching.
Our schools and workplaces are full of bullies who not only won't understand but who will act against or exclude your child. In fact, often children on the spectrum are segregated, like other persecuted groups in our history. How is this fair?
Our children know that this is happening and it takes a great emotional toll on them. In the right environment and with the right supports, a person with autism can thrive. Crush their spirits however and it may take a lifetime to recover.
The question is, should we speak out or hold our tongues? Being a non-confrontational person, I would love to simply crawl away and let society think what it will -- but that isn't the right thing. Throughout history, the only way that persecuted groups such as women voters, black people and gay rights activitists have gained their their rights has been to fight for them. To stand up and be heard.
That's what we as in the autism community need to do to effect societal change.
There's no cure now and there is unlikely to be one in your child's formative years. It's fine to fight but lets be clear what we're fighting. It's not autism. We're fighting for acceptance, for understanding, for support and most of all for a change in our circumstances.