(This is a blog post I wrote in April 2013, six months after my youngest daughter was diagnosed as autistic. The original blog is now defunct, but this post has always been one I go back to.)
I don’t know if you are aware of this, but after you go through the palaver of getting an official autism diagnosis for your child, you are pretty much left to your own devices.
There is no “treatment plan”, there is no manual that says ok, now you need to go and do All The Things. The paediatrician we saw basically said “chelation is dangerous, diet stuff is crap, everything you do about this now is up to you, see ya in six months or so.” And that was it.
Honestly, I was surprised, but relieved too. It meant we were free to make up our own minds on what we were going to “do” about “this”. It meant that we had some time to do some research. Learn some stuff. Think hard about the most important part in all of this – our gorgeously awesome NinjaGirl – and what it was she really needed.
Assuming of course, that she needed anything at all.
And this is where we (once again) started to diverge from the norm.
Now the usual approach to receiving an autism diagnosis for your child is to listen to the rather long (and presumptuous) lists out there in the community of all the things your child will never be able to do, and then sign up for an arseload of therapies and interventions to try and stop that from happening. And why wouldn’t you? You want the best for your child, right? For them to be happy, to be successful, to fit in with their friends and family? So why wouldn’t you make sure you were doing everything you possibly could to make sure your child can do all the things you wish for them?
So you start making appointments with psychologists, because everyone knows autistic kids have issues, and need help. And then you make appointments with an occupational therapist, because everyone knows autistic kids have problems, and need help. And you make appointments with a speech pathologist, because the worst thing would be a kid who doesn’t talk, and so autistic kids need All The Help, All The Time.
You might add some ABA therapies (behaviour modification stuff, basically), recommended at 20-40 hours each week. Perhaps some social therapies, so your autistic child will learn how to be social. Any medical appointments that may be required for any co-morbids that often accompany autism come on top of that. And before you know it, you are racing around from appointment to appointment, dragging one or more child with you, trying to make sure that you are doing everything right so that your child will have to suffer from their autism as little as possible. Because that is what every parent wants for their child, and to make that happen, well, you must do it like this, right?
Except, maybe….maybe all that is wrong.
Maybe what an autistic child needs is not to be subjected to therapies that are founded on a presumption of deficit and delay. That assume that autistic people are automatically failing simply by existing. That spend precious childhood days reinforcing in your child’s mind that how they think, communicate, relate to people, connect, how they ARE, is somehow wrong, incorrect, and needing to be fixed. Perhaps therapies and interventions that suggest that your autistic child needs to be cured of who they are, needs to have conformity as an ultimate goal and measure of success, perhaps these kinds of therapies are doing more harm than good.
Imagine that you find a particular physical task extremely uncomfortable. Trying to do it makes it hard for you to focus on what is happening around you. Maybe it hurts. Maybe it creates enough anxiety that you start to cry or yell. But instead of being supported in that by the people around you, you are instead expected to do it anyway, because that is what other people, people you don’t know and who don’t know you, expect you to be able to do because if you don’t they feel uncomforable. So you spend time each day “practicing” something that hurts you. Now imagine that task is making eye contact.
Or perhaps imagine that you DO something that makes you feel good. When you are sad or uncomfortable, you do this thing, or a variety of things, and they calm you down so you can function again. Or you do this thing when you are happy or excited, and this is how you show it. Or perhaps these things you do help your brain tick over, just like when people are concentrating and they stick their tongue out a bit, or jiggle their leg, or when they meditate to music. Now imagine that other people, people you don’t know and who don’t know you, find it uncomfortable that you do these things, and so you are expected to stop, even though it means having a harder time expressing your feelings, or a harder time focusing on your interests. So you spend time each day learning not to do these things, learning to suppress who you are. Now imagine that the things you do are stims.
And now imagine that you are three, like NinjaGirl, You don’t talk, which people expect you to do. You make lots of gorgeous loud noises, you babble, you laugh, you click and hoot and growl. You just don’t make words. And so people assume you have nothing to say. That you can’t communicate, or that you are some how mentally deficient. Because you don’t do something in the way they expect, or in a way that makes them comfortable.
Imagine how horrible it would be to have to deal with any of that. With all of it. With everything that you are, everything that you could be, discounted because it just doesn’t fit with how other people expect you to be.
And imagine that you are put into a system based on therapies and research that are built on that very concept.
So it was no surprise that, when we looked into what therapies were being recommended and what interventions and support services are available, and then we listened to what the autistic advocacy community was saying, my first reaction was “wait….you want me to do what?!”
Because first things first, NinjaGirl is a person. And then a child. And there is nothing wrong with who or how she is, and there is no way we are going to seek support from anyone who thinks otherwise.