John Elder Robison is a world-recognized authority on life
with high functioning autism, also known as Asperger’s Syndrome. The
best-selling author of “Look Me in the Eye,” “Be Different,” and “Raising
Cubby,” he has worked to help people understand what life is like for those
with Asperger’s and to gain acceptance for those whose brains work differently.
Yet, when he was offered the chance to take part in an experimental research
study utilizing TMS, transcranial magnetic stimulation (basically energetic
stimulation of targeted parts of the brain), in order to discover the
underlying brain causes of autism and see if it would help change autistic
brains, he jumped at the opportunity.
In “Switched On,” he tells of what happened next. His
results were unexpected and certainly not the same as that which everyone who
took part in the study experienced, but they open up the possibility of brain
transformation and the pros and cons of such a treatment.
The treatments had both immediate effects that sometimes
faded as well as long-lasting effects that are still with him. He is a changed
man. He became able to make eye contact, something he had always avoided. He
also began to be able to read and feel empathy for other people’s emotions. It
even impacted his hobby of taking photographs – his use of color changed as
well as his compositional style.
Yet, as is often the case with profound personal change,
these positive aspects came at a great cost. As . the treatments were going on,
he feared the loss of the insights he experienced. “Imagine that all your life
you have seen the world in black and white. Meanwhile, everyone around you
describes the beauty and richness of color. . . Now try to imagine what it
would feel like to experience a glimpse of the truth. You step into a lab, and
for a few hours, scientists turn on your ability to see the world in all its
vivid color . . . Then the colors fade. Your world in once again black and
white. Yet you are forever changed.”
He also had to deal with changing relationships as he came
to terms with social mistakes he had made and reinterpreted events in his past
in a new light.
Robison promised the researchers that in his book, he “would
do his best . . . to share both the promise and risk and complexity of these
new technologies.” He has succeeded in this mission. He discusses his own
experience as well as the ethical question of whether we should even be trying
to fix Asperger’s seeing as those with this syndrome often have talents in a
particular area that might be lost. In trying to change them, the world might
be losing the inherent benefit they can bring to the world. This isn’t a simple
situation.
As the mother of one diagnosed teen Aspie and another who I
believe is on the spectrum as well, I admit I’m conflicted about the potential
for these new technologies. They aren’t available to the general public yet,
but they hold some promise. I see first-hand the struggles my sons have with social
cues, fine motor skills, and learning disabilities. They don’t lie, which can
be a positive, but their honesty can also be brutal, and unless I am actually
crying (which doesn’t happen that often), they never can sense that I am upset.
I know they love me and that it is not intentional, but it still hurts.
I have an adopted neurotypical daughter. One day when she
was about three years old, she had done something I didn’t like and I had made
a face at her. “Why are you mad at me?” she asked. It was such a simple
question but it shocked me. I had been a parent for thirteen years, but it was the
first time one of my children had picked up on a nonverbal cue that I was upset.
Would my children be “better” if these issues could be
fixed? Maybe, but they would also be different. In any event, my children are
well on their way to adulthood and any widespread use of this technology is a
few years out. It will be up to them if they ever want to pursue it. As Robison
indicates in “Switched On,” the therapy seems to work better on adults anyway,
having a more long-lasting effect, perhaps because they have more experience to
work with.
“Switched On” makes for compelling reading for anyone
interested in Asperger’s or the ethics of brain-changing treatment. It raises
more questions than it answers, but Robison’s first-hand account is an
important part of the conversation.
No comments:
Post a Comment