Recovery vs Neurodiversity - Why Can't We Accept Both?
It's not often (or, ever) that I throw my blogging-hat in to the ring when it comes to the big debates within the autism community. Frankly I find it sad and frustrating that there is such division and conflict. Tell me - do you know of any other group that are bound together by a disease or disorder, that experiences the venom and hatred running rampant through this one? I don't.
Not long after my son Josh was officially diagnosed, I joined a few online support groups - for parents of special needs and autistic children. What I discovered much to my shock and disappointment, was that belonging to these groups was actually doing more damage to me emotionally/psychologically than good because of the vehemence with which people would argue their beliefs - it wasn't enough for anyone to simply say, this is how I feel, or not, it was apparently necessary to make those who didn't share those beliefs feel like the worst people on the face of the earth. I'm not just talking about the vaccine issue, it also happened and still happens, regarding treatments and therapies. So I simply stopped participating and have made it somewhat of a self-imposed rule that I don't get in to those issues any more, particularly on my blog. I'm not writing to be attacked by people for things I don't deserve to be attacked for, nor am I trying to impose my feelings on to others. I simply want to write about Toad (my nickname for him), and what life is like with him. I know all too well how quickly things can deteriorate when it comes to certain subjects in this community.
Currently, there are battle lines in the sand between those that believe autism can and more to the point, should be cured and those that believe autism is just a variation on what we view as "normal" and we should be working to accept and support rather than be trying to change those who have it. The terms in vogue at the moment for these camps are "Recovery" and "Neurodiversity". If you do more than just casual reading about autism, I'm sure you've seen these terms flying around a lot lately.
What's interesting to me, is that this is not new. Not for me, anyway. Back when Toadie was 6-7, there were no official terms or neatly defined positions. But the two ideologies were certainly clear, even back then, when it came to making some tough decisions about further interventions.
With few answers and more questions all the time, this is how I see it: Autism is like cancer (let me finish, I don't mean in a prognostic sense). There are different types, and there are different severities. Some types and severities will respond to some treatments, some will respond to others, and those people will recover. Some, will respond, but maybe not completely recover. And some won't recover or respond at all. To anything you try. Even cutting edge, experimental treatments, once you've exhausted the mainstream. I've tried to come up with other comparisons, but this is the best one I can think of. Cancer is not the same in everyone who has it. And it's not treated the same way in everyone who has it. I've had skin cancer. A basal cell carcinoma on my nose and had minor surgery to remove it. I would never, ever compare myself to my friend who lost her battle with Leukemia last summer. Yet we both had cancer. Same disease, yet so very different. That's what I see with autism - how else can you explain that some children truly seem to respond and "recover" with various therapies and treatments, and some don't? Some improve to a certain extent but not completely? How can you compare Toadie to Temple Grandin? You don't see cancer agencies and support groups insisting that there is one cause and one right way to treat it, and if you don't agree with that then things are going to get nasty, do you? No, never. People would be horrified. But this is what is happening, and has been happening all along, in the autism community and it makes me wonder why.
There are so many variations and differences within the diagnosis and and for all we know, we could be looking at different entities.Unlike cancer, we can't just look at some cells and say, yep, that's autism. But the current accepted notion is that this is just one giant spectrum, so we should be accepting of the fact that there are different causes, treatments, and outcomes, not fighting each other over them.
We did a lot with Toad. All the research told us that early intervention was key. You had to get in to it quickly, the more the better, and there was a window... the magic, terrible window, that by all accounts closed by the time he was 7. We did. We did it all - speech therapy, occupational therapy, physical therapy, pre-school, hippo-therapy, you name it. He hated it all except the hippotherapy and some of the OT/PT. We were told, and the research showed, that ABA was THE accepted therapy. We did it. We got him started when he was 3-4, and did it for 3 years. At that time, Karen Seroussi was all over the news and internet with the GFCF diet. I decided we needed to try it, after all, her son got better! So, Toadie was GFCF also for 3 years. We also tried mega vitamin supplementation, saw a special, self-proclaimed Autism Dr in Oregon who did a million tests for everything - mercury toxicity, you name it. Nothing came from the tests, and he suggested Methyl B12 injections. So we tried those too. And after all of this, nothing. No significant changes in anything, not his behavior, not his speech, not his mood, nothing. And he hated ABA. And when I say he hated it, I mean he would scream for hours and hit himself till he was bloody behind the ears. How helpful could it possibly be when that was happening every time? It wasn't. He truly made no real progress with any of it. It ripped my heart out every afternoon, listening to him scream during his ABA sessions. What were we doing to him??? How was this good?
In the end, it was too much. Too much heartbreak, distress, and yes, expense, for too little return. All I could think was, what is the goal here, what are we trying to do, exactly? He hadn't responded the way anyone had hoped to any of it. He was miserable. He was just a little boy. What were we doing?!? Beyond what we'd tried there were more, un-tested, potentially dangerous treatments being touted as the route to recovery. Everywhere I turned on the internet there was something else, and they all had people claiming to have "cured" their children's autism with them.
What it came down to was, this is our son. We've done a lot, things that have been studied and "proven", as well as things that haven't. He hasn't responded. All we want is for him to be happy. I love my Toad with all my heart and maybe, this is just who he is. Why should we be trying to make him "normal" when it clearly is so hard and unhappy for him? Who are we doing this for? Obviously, every situation and every child is different, as I pointed out above. With Josh, the severity of his issues, and his lack of response to everything we'd tried, it just seemed like we were the ones who needed to change. I decided then that this, was Toad. I was not going to try to force him in to some mold that the rest of society said was how he should be. All I wanted was for him to have as happy a life as he could. So we stopped. Everything except school and speech therapy. There was no regression on his part, confirming the lack of response to any of it. As I've mentioned before, the medication is the only thing that had any significant impact. That and school. At school the progress is slow, but it's there.
If Toadie were more cognitively able to understand things and not so developmentally delayed, the decisions might have been different. But I feel like it was the right path for him. Do I feel guilty sometimes when I read about other parents who have spent fortunes on a million different treatments and tried everything under the sun to "recover" their children? You bet. Maybe we didn't do enough. But then I think back to those days, and how unhappy he was, and the crazy, scary things that people were suggesting, and I think, no, we made the right choices. I am not willing to risk his happiness, health, safety or even his life just so he can be more "normal." With the right balance of his meds, he is generally a happy little Toad, and that is all I've ever wanted for him.
So whose side am I on? You might think from this the answer would be the Neurodiversity camp. But it's not. I'm on Josh's side. And that's all. I can't say that for all kids with autism, that simply accepting their issues is going to be the "right" choice. I don't believe that. I think the choices need to be as individual as our children are, and that sorting our community in to two sides like that is ridiculous.
Most of us learn early on in childhood that working together gets you farther than working against one another. And that would certainly hold true for research in autism. But we don't work together. Subsequently, our energy and limited resources are divided which only limits any progress that could actually be made. It's unfortunate. As someone who is on the older side with a child now entering his teens, I have watched these debates for a decade - with all of the information that has been learned over the years, you'd think that things would have settled down by now. They haven't. In fact, they almost seem to be getting worse. Which isn't helping anyone, least of all our children.