I recently came across a wonderful book by Sophie Walker called “Grace Under Pressure.” As a mom of a child with special needs, I could relate to her story. I was very grateful when Sophie provided me with an excerpt from the book to share with you:
Grace, Under Pressure
A Girl with Asperger’s and Her Marathon Mom
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 difficulties, 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 sufficient. 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 finds 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 find 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 “fixing” 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:
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 find 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 surfing 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, fire up
the search engine to find 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.
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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