WeAreAutism.org - The Social Support Network for People Living with Autism

Karl Taro Greenfeld: Growing old with autism

In mid-2007,
I set off to meet with geneticists, epidemiologists and doctors who
specialize in researching and treating autism. I was seeking a novel
therapy for my 42-year-old autistic younger brother, Noah. I was also
looking to discover how heightened awareness of autism – it is now
among the most financially successful and mediagenic diseases ever,
with hundreds of millions of dollars a year going to research, and
regular press coverage – might have resulted in new and innovative
programs for adult autistics like Noah. For purposes of fundraising and
awareness-raising, autism has been portrayed as a childhood disease.
The federal Department of Health and Human Services has characterized
it as a "disorder of childhood."

There are practical reasons for this: Early intervention has been shown
to be the most effective therapy. The trend in autism treatment has
been to steadily lower the age at which intensive intervention
commences – as early as five months, according to some experts. Yet
autism is not a degenerative condition; the vast majority of the one in
150 children who are afflicted will survive to adulthood.

As I spoke with the experts, I began to see that the focus on children
had influenced not only the marketing of autism but also research and
treatment. It seemed the majority were interested in children only, the
younger the better.

"The best time to look is at the
early ages, when autism is developing," Sophia Calimaro, vice president
for research at Autism Speaks, told me a few months ago, explaining
that was also where there had been the most treatment success.

Low-functioning adult autistics are viewed with sympathy but not much
scientific inquiry. No one has broken down how many dollars are
actually flowing to adult autistics, but at the International Meeting
for Autism Research in Seattle in May 2007, I counted more than 450
papers and presentations and three dozen talks on autism given by
academics and specialists; of those, only two dealt with
low-functioning adults, and neither included a cohort large enough to
be statistically relevant.

The careful measurements of
brain function, or dysfunction, were almost all done on children. A few
cognitive and emotional development studies dealt with adults, but
these were overwhelmingly focused on high-functioning autistics and
people with Asperger's syndrome.

Autism Speaks, the major
sponsor of autism research projects, has not broken down the proportion
of funds that go to adult-oriented research, but Peter Bell, an
executive vice president for the group, whose teenage son is autistic,
laments that "it's low, too low. ... We have to change the paradigm for
those of us who have kids who are going to grow up and need more and
better services."

That change can't come soon enough.
Even with state-of-the-art early intervention – eight hours a day,
seven days a week – many autistics will need support throughout their
lives.

The reality is that very few, perhaps only 10
percent, of those as severely autistic as Noah benefit from the current
interventions to the point where they become functioning members of
society.

If the current Centers for Disease Control and
Prevention estimation of prevalence is correct, then there will be an
awful lot of adult autistics who need lifetime support and care. Noah's
life has been a grim study in how scarce those resources are. Without
them, his behavior has regressed.

A recent "psychological
and psychopharmacological" report by the California Department of
Developmental Services said Noah exhibited a "failure to develop peer
relationships, a lack of social or emotional reciprocity," and it
described some of his "maladaptive behaviors" like "banging his head
against solid surfaces, pinching himself and grabbing others."

"Noah may also," it noted, "intentionally spit at others, pinch or
scratch others, dig his fingernails into others, and/or pull others'
hair. He may bite, head-butt and hit others; throw objects at others;
and hit/slap his head when he is highly agitated." He is a handful.

Now, imagine a few hundred thousand Noahs

LINK: http://www.dallasnews.com/sharedcontent/dws/dn/opinion/viewpoints/stories/DN-greenfeld_29edi.State.Edition1.304223a.html