When I saw the cover story, “After Autism,” in Sunday’s New York Times Magazine, I must confess
to feeling both vindicated AND envious.
From the moment my daughter, Sarah was given the dreaded A-word
diagnosis at 12 months old, I always believed in the possibility of a complete
recovery. Maybe it was magical
thinking, but I had to wake up each day with the hope that I could somehow help
my baby girl grow up, make friends, graduate from college and live an
independent and productive life. Back in the early 1990s—before autism was an
epidemic and Applied Behavioral Analysis (ABA) was the preferred treatment—I
stubbornly believed that Sarah would one day catch up to her neurotypical twin brother, Max. It didn’t matter that most of the “experts”
and test scores predicted that she would NEVER catch up—let alone graduate from
college.
Diagnosed
very early, I had hoped that intensive, early intervention would enable Sarah
to emerge from autism completely, like the teenagers featured in “After
Autism.” However, unlike those success
stories, Sarah’s progress was painfully slow.
We tried MANY treatment approaches: speech therapy, occupational
therapy, Dr. Greenspan’s floor time, vitamin B supplements, cranial sacral
therapy, skin brushing, joint compressions, special schools, along with a
variety of drugs. It was not until Sarah
was seven and her behavior was completely out of control that we tried ABA
(against the advice of her psychiatrist).
By age 7, we were told by the ABA therapists, “it might be too late” for
Sarah to benefit, but we tried it for a few years anyway. At age 10, she began seeing Dr. Harry Wachs at
the Vision & Conceptual Development Center in Washington D.C. (now in
Bethesda, MD). I also took my daughter
to an allergist and tried a modified gluten free diet. There was no panacea, so I felt obliged to
try everything. My strategy was practical and unscientific: throw enough
you-know-what against the wall and hope for the best. For reasons I still don’t understand, Sarah
finally began to improve dramatically when she hit puberty.
Did my
strategy work? Yes and no. Like the old Virginia Slims commercial, Sarah
has “come a long way, baby.” My daughter
is “high functioning,” (but not Asperger’s).
On the positive side, Sarah graduated cum laude from Pace, after earning
an Associate’s Degree from Landmark College (also cum laude). However, it took her 5 years (including
summers), careful selection of a major, and a tremendous amount of
tutoring. Along the way, Sarah managed
to make a small group of friends, find a boyfriend, and work summers,
volunteering with young, special needs kids as a teacher’s assistant. She even co-starred in a film, “Keep the
Change,” about young adults with autism who struggle with relationships.
Sadly,
though, Sarah is NOT cured. Try to have
a conversation about what’s going on in the world, or about anything that isn’t simple or
straightforward, and you will still see the symptoms of autism. Her voice will grow loud and defensive. As Sarah becomes agitated, she will repeat
herself, talk in scripts, and probably stop making eye contact (which is nearly
normal) when she’s on familiar ground.
There are still many life skills and social situations which pose a
challenge. We still haven’t convinced
her that money doesn’t grow on trees or endlessly pop out of an ATM. Then again, there are probably many
neurotypical 20-somethings who haven’t mastered budgeting either.
Of
course I am profoundly grateful for all the progress my daughter has made. I’m proud of Sarah for her courageous
motivation and work ethic that made her many achievements possible. I know how
much worse it could be from reading in “After Autism” about the young man who
made little progress, despite doing the same ABA program for the same number of
hours as another boy who has completely recovered. Catherine Lord, one of the researchers in the
Times article, who has studied autistic kids for 40 years, says: “I’m pretty
good at what I do. But I can’t predict who’s going to get better and who’s not
based on what they look like when I first see them. In fact, I not only can’t predict who is
going to turn out with optimal outcome, but I can’t even predict who will have
high functioning autism and who will be low-functioning.” That’s a pretty scary and discouraging
statement coming 23 years after Sarah was born.
Frighteningly little has changed over that period of time. How is it
possible, after billions have been poured into research, that no one knows what
has happened to the brains of people who no longer have autism? Were their brains different at birth from
those of other autistic kids? Or were their brains similar at birth, but
changed from treatment?
Unlike
20 years ago, there are now people who are against
eliminating autism. Welcome to the world of neurodiversity. Ari Ne’eman, president of the Autistic Self
Advocacy Network, says “autism isn’t an illness in need of a cure.” He believes
that certain qualities of autistic people, which don’t conform to society’s
norms, are actually valuable to a person’s identity and to the world. As always, Temple Grandin, the famous autistic
author and animal scientist is the prime example. Grandin has always believed that her autism—which
manifests in intense focus on details and unusual visual-spatial skills—enabled
her to design humane slaughterhouses for livestock. Furthermore, Ne’eman
argues, “What proof is there that those who lose the diagnosis are any more
successful or happy than those who remain autistic?”
Ne’eman
has a point. Carmin Diflorio, a
no-longer autistic 19 year old said: “When I was little, pretty often I was the
happiest a person could be. That went away when my sister started teasing me,
and I realized that (hand) flapping wasn’t really acceptable.” I still remember Sarah flapping her hands
with joy and excitement, but I also remember my daughter wouldn’t let anyone
HOLD her hand. Trading in hand-flapping
for hand holding has enabled my daughter to connect with a boyfriend, and might
one day help her realize her very
normal dream of getting married.
The
truth is nobody knows whether a person with autism is “better off” with or
without the symptoms. Lower functioning
people with autism are unable to communicate their feelings on the
subject. Higher functioning people with
autism who ARE able to communicate their feelings and preferences cannot speak
for the entire spectrum. As a parent, I
honestly wish my daughter was among the 10% of autistic people who made a full
recovery. That does NOT mean, as Ne’eman
suggests, that I’m really saying ‘I wish the autistic child I have did not
exist and I had a different (non-autistic) child.’ I wouldn’t trade Sarah for
anyone. (Ne’eman obviously has no idea
what it’s like to be a mother.) What I want for my daughter —and what I suspect
parents of other autistic kids want—is for their children to be able to voice
their own feelings in this complex conversation.
I’m glad there’s a conversation that de-pathologizes
autism. Let’s find new ways to talk
about autism, and let’s hear from the young adults on the spectrum who were
yesterday’s kids. But we should listen to ALL
of them, not just the ones who articulate best (or loudest). Let’s not
marginalize (or ignore) the voices of all the children on the spectrum who CAN and
do benefit from medical and other therapeutic interventions Early treatment of autism—whether or not it
“cures” the child completely—often makes a tremendous difference in the quality
life for the child AND the family. Sarah
can tell you.
Labels: " ABA, "Keep the Change, allergists, Ari Ne'eman, autism, behavioral therapy, Dr. Greenspan, Dr. Wachs, floor time, Landmark College, neurodiversity, NY Times Magazine, Pace University, Temple Grandin, twins
