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Excerpt from "Grace, Under Pressure: A Girl with Asperger’s and Her Marathon Mom"

Treatment

by Sophie Walker


As things stand, the main “treatment” comes in the form of support, and for high-functioning autism like Grace’s, that primarily means learning. There is a raft of educational techniques and assistance available. Though God knows in my part of the world it seems extraordinarily hard to access (more on this later), this was the route I had started down with Grace. I had seen examples of people with high-functioning autism who were able to adapt and learn how to socialize and overcome their communication dif?culties, while re-taining their individuality and often, indeed, being prized for their particular (and many) skills.

But for many parents, among them — naturally enough — those whose children suffer from severe autism, this is not suf?cient. Some who are desperate for more radical help to change and improve the lives of their children want alternative therapies.

Researching the options on offer in this universe felt like stepping into Aladdin’s cave: before me lay acres of winking treasures — endless bounty that somehow also seemed liable to leave me empty-handed if I grasped for them. Thousands upon thousands of case studies are out there, detailing the differences that can be made by everything from drugs, to diet (cutting out gluten, dairy products, caffeine, and sugar being the most common), to dolphin therapy and dogs for autism. Intensive behavioral training exists in many different forms and programs; music, light, and sound therapy is also popular. I even discovered the “Audiokinetron” — an electronic machine to exercise the entire hearing system, with the aim of improving sound sensitivity and thus reducing behavioral disturbances.

In every instance, a proponent would rave about the changes effected. Someone else would declare it bunkum.

I asked Peter Bearman if the work he was doing would result, ultimately, in a cure. Do you, I asked, foresee a treatment?

This time his answer was unequivocal.

“Yes. According to our data, about 10 percent of children with autism who start off severely impacted have incredible developmental trajectories and are off the spectrum within a decade. Something is happening to those children,” he said.

“And as soon as you can see that some kids really do change in different ways, you have to ask, ‘What are their parents doing?’?

Bearman can’t do the study himself: as part of the research conditions for his other work the names and personal details of the families and children he has studied have been erased. He is following 8 million children, but he doesn’t know who they are, or what their parents did, or what services they used. But if someone else does a study and ?nds those children and observes what they’re doing, he says, “I’m sure that what’s accessible to 10 percent of all children can be of use to many more.”

It’s tantalizing to think that the seed of knowledge about how to cure this condition may already be out there in the population somewhere.

But when I think about a “cured” version of Grace, my mind draws a blank. I ?nd I don’t know who that is. Where does my daughter begin and her Asperger’s end? How can she be Grace without being all that she is now?

The whole idea of somehow “?xing” autism is of course a highly controversial area and there is a growing movement among adults with autism and Asperger’s syndrome to oppose any attempts to “cure” the disorder. They emphasize instead the importance of celebrating difference.

Aspies for Freedom is one such group. An online forum founded by a group of people with Asperger’s syndrome in June 2004, it aims to bring together people with autism-spectrum conditions to further the view that Asperger’s and autism are not negative, and not always a disability.

“Part of the problem with the ‘autism as tragedy’ point of view is that it carries with it the idea that a person is somehow separable from autism, and that there is a ‘normal’ person trapped ‘behind’ the autism,” says the homepage on the group’s website. It continues:

Being autistic is something that in?uences every single element of who a person is — from the interests we have, the ethical systems we use, the way we view the world and the way we live our lives. As such, autism is part of who we are...

We know that autism is not a disease and we oppose any attempts to “cure” someone of an autism-spectrum condition, or any attempts to make them “normal” against their will.

I read this and stop dead. Is this what I have been doing? Have I been trying to make my darling girl “normal”?

There are many similar groups and thousands of proponents. There are also thousands of parents and the deeper I go into the argument on cyberspace, the louder the shouting gets. Just as I thought I was starting to get a grip on the scale of the community to which my daughter — and therefore to a certain extent I, too — now belongs, the rug is pulled out from under me again. Now I have to answer the question of just how committed we are to being part of this community or whether we’ve been trying to be something else.

I think back to the very many testimonies on treatments I read and I wonder at how hard it must be for parents of severely autistic children to support any idea that says attempts to cure are iniquitous and insulting.

And then, just like that, I ?nd an answer for me and for Grace.

It’s a Sunday afternoon and the ham I am boiling in the kitchen has caused the windows to steam up, giving the outside world an opaque, distant appearance. Betty is asleep and Grace is at her dad’s house and I am for the time being alone, sitting at the dinner table sur?ng websites and turning the pages of a growing pile of books beside my computer. My head is spinning. I have tried several times to get up and walk away and allow my jumbled, gyrating thoughts to come to a stop — to let them fall where they will and leave me to pick over the pieces later. But I can’t quite do it.

And then I click on a site called Neurodiversity.com, whose stated aims are to reduce the challenges of autism and help increase education and support. On the page dealing with the question of a cure is an excerpt from a quote which makes my heart beat a bit faster. I sit up and quickly, quickly, ?re up the search engine to ?nd the rest of it.

The quote is from e.e. cummings and it feels like oxygen. It’s all the answer I need, for now.

To be nobody-but-yourself — in a world which is doing its best, night and day, to make you everybody else — means to ?ght the hardest battle which any human being can ?ght; and never stop ?ghting.

I determine to let Grace be herself: to cherish and delight in her and work hard to help others to understand and appreciate her. I can help her by getting her the support she needs to be happy within herself, and to take pleasure in her idiosyncrasies, without worrying about where they come from or what that means.

At least, I’ll try...

Sophie Walker is the author of Grace, Under Pressure: A Girl with Asperger’s and Her Marathon Mom. She lives in London. Visit her online at http://www.courage-is.blogspot.com or on Twitter @sophierunning.

Excerpted from the book Grace, Under Pressure: A Girl with Asperger’s and Her Marathon Mom © 2013 by Sophie Walker. Printed with permission of New World Library www.newworldlibrary.com


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