Monday, April 12, 2010

I am autism, too. Thoughts on neurodiversity and the cure

I wrote this in response to a parent's note, but on second thought, I thought perhaps I should share it more widely . . .

For many of us on the spectrum, a parent’s stated quest to “cure” autism feels sort of like a divorced parent constantly criticizing her ex in front of us kids. As that kid, I know I am half Dad, and half Mom. So when Mom tells me Dad is no good, what is she saying about me? For those of you who think this is metaphor, let me assure you it’s not.

If much of my life is defined by autism, and autism is a terrible thing, how do you think I will feel about myself? I ended up in special classes because I am autistic. I flunked out because I am autistic. I already know I am disadvantaged with respect to others who are not autistic. I don’t need more stuff to feel bad about.

I want useful help. I want to learn how to hold a conversation, how to make a friend, how to get a job. Practical skills are what I need, not moral judgments.

That’s why it is vital to embrace neurological difference. It is not going to go away, whatever a parent may wish. Demonizing the way we are only makes us feel bad.

And that’s not all. I am a logical fellow. When I consider the situation, it's obvious that autism is not evil. It’s not good or bad. It just is. There is no morality hidden inside neurological difference. It's not logical.

It’s taken a lifetime to begin to understand the myriad ways that autism has shaped me. Indeed, as an adult, it’s just one of the things that make me who or what I am. It’s easy to dwell on what I can’t do, and from there I can surely blame autism or anything else for my failure. But I know that’s not a line of thinking that leads anywhere. So I try to focus on what I can do, and it makes me feel good to to say, “See this great gift I have? It’s because I’m autistic!”

Maybe you don’t agree, and maybe it’s not even a gift in your opinion, but why not let me have my joy over that bit of being?

Life goes better for all of us if we change what we can, and accept what we can’t with some semblance of a smile.

There is nothing wrong with wanting to take away a disability. That's a great goal, and one I fully support. What's wrong is making something out to be "bad," and then failing to take it away; leaving us stuck with the "bad" irremovably bonded to us.

Moral judgement has no place in the world of remediating disability.

Friday, April 9, 2010

Some new autism research is funded . . .

Autism Speaks has announced the funding of five million dollars in new research. In this and my next few blog posts, I’ll describe the research and why it’s important. The five million dollars is allocated over sixteen different grants. Two of them are described here.

I’d like to begin by quoting part of the Autism Speaks release:

Novel directions in early detection of autism

Two studies to be funded are focused on developing new methods for very early detection of ASD. The first will validate a simple questionnaire that can be used by pediatricians to screen for ASD in one year-old babies (Using Parent Report to Identify Infants Who Are at Risk for Autism Spectrum Disorder (ASD) James Resnick, M.D., UNC at Chapel Hill). The second by Sabine Bahn, M.D., Ph.D., MRCPsych, Institute of Biotechnology, University of Cambridge will search for biomarkers for ASD by analyzing blood samples using a newly-developed technology platform called xMAP to identify a panel of proteins that can serve as diagnostic biomarkers for ASD (Biomarkers and Diagnostics for ASD)

Countless studies have shown us that early intervention is the best way to get a good outcome with most autism. No matter what level of autistic impairment you have, the sooner you start working on it, the better off you are. My own life experience has made that crystal clear. So how do we do that?

Right now one of the best early screening tools we have is called M-CHAT. It’s a quiz pediatricians give to parents of toddlers. The answers add up to a score that can cause the pediatrician to refer a tyke for evaluation and further testing – the first step down the diagnostic road.

M-CHAT is good, but by itself, it’s not enough. First of all, it is only one component of a multi-step diagnostic solution. Second, its effectiveness varies in different cultures. A behavior that may seem abnormal to a Vietnamese mom might seem ordinary to a Mexican parent.

But the biggest weakness of M-CHAT is that it starts too late by focusing on toddlers. Scientists are working hard to develop screening tools that will pick up early signs of autism in infants, and that’s what one of these studies aims to do. They are developing a questionnaire like M-CHAT, but for use with parents of infants.

I wil never forget the first time I read the M-CHAT questions. I looked at that simple sheet, and I thought to myself, This thing would have picked up autism in me and my son Cubby in an instant. If only we had known . . . How might our lives have been different, if we'd had that insight so long ago?

I am really excited about the prospects for detecting and remediating autism in infants. Such detection will present us a unique opportunity. You see, the infant brain is at its most plastic and formable. If we could accurately identify those kids who were turning down an autistic path at age one, I think we’d have a good chance of steering many of them back to a typically developing course.

The older we get as children, the more fixed parts of our brains become, and the more we become set in our differences. That’s not to say we can’t improve, grow, or change throughout life. It’s simply that there is a one-time opportunity in early childhood, and many if not most autistic kids miss that chance today because it passes with parents unaware, or only vaguely aware.

The second study – the biomarker study – aims to detect autism though blood tests. At this moment, that seems like a farfetched idea but remember how many things we DO detect through blood testing today, and how farfetched many of them would have seemed to our grandparent’s generation.

The advantage of blood tests is that they are more culture-independent. Their results are not affected by the language of the test subject or the tester. They are not affected by demographic differences, either. It’s almost always preferable to have a hard scientific measurement like this, if you can get it. The problem is, these tests are terribly hard to develop. This particular piece of research won’t take us all the way, but it may well be an important step on a journey we will complete at some point in the future.

The majority of the money Autism Speaks raises is spent on research. Projects like these are important, necessary, and a good use of research dollars, in my opinion. If I helped raise money at a Walk last year, and a few of my dollars ended up with these scientists, I’d feel pretty good about that.

But they are only one piece of a terribly complex puzzle. Once you identify signs of autism in an infant, what do you do? Do you use as-yet undeveloped behavioral therapies? Can medications change the course of brain development in infants in a good way? What other options do we have to improve the outcome of the next generation of kids on the spectrum?

And there’s an even more important question. How do we know which kids need intervention, and at what level? Readers of this blog know I’ve participated in some studies that use TMS to measure brain plasticity as a marker for autism. In the early analysis of those results, scientists can separate autistic from neurotypical people, but the marker is not at all predictive of autistic disability or gift.

That’s the hidden danger of infant testing and treatment. On the one hand, we know that people with serious autistic impairment respond really well the earlier we intervene with existing therapies. But what about some of the more powerful experimental therapies being studied today? If applied to a person who faced permanent disability, the result may well be all to the good. But how would a less imparted person like me be affected, if altered as a child? In our quest to cure profound disability, we must always recognize the gifts that may be concealed within otherwise crippling conditions, and work to remediate the disability without extinguishing that creative fire.

It’s going to be a hard balance to find and keep. The earlier we start to treat autism – however we do it – the less we are able to quantify the scope of impairments that individual may have or develop.

I wish I could offer answers, and not more questions. But I can’t; none of us can. Still, I can understand the importance of early detection, and I support studies that push the foundries of detection farther back into infancy. The question of what we do with the knowledge – once we get it – remains for the future.