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A First Person Response to the TIME Magazine Cover Story on Autism
by Robert A. Naseef, Ph.D.
Sometimes it seems like yesterday, since my only son and my oldest
child, Tariq, was a seemingly normal happy toddler. At 18 months he was
just beginning to speak and had a small but useful vocabulary. Then
autism struck, and life has never been the same. When I found out my
son had autism and that the condition would last for his lifetime, I can
remember believing that I would never smile or laugh again.
When I first glanced at the cover of TIME featuring a boy with autism, I
shuddered. The boy's hands and his far away look brought me back 20
years. That was my baby's hands at 2-and now at 22. A knot formed in
the pit of my stomach. My head began to spin. Momentarily, I got short
of breath. I decided to go on with my day and read it another time.
Later, I read the article in its entirety, and I feel grateful to TIME
for bringing the complex issues around the causes of autism, the
exploding number of new cases, the impact on families, the status of
research, and the need for intensive treatment to the fore.
As a psychologist, I help families deal with the often treacherous
emotional landscape once autism strikes. It's been called the "autism
bomb." People often spontaneously describe to me how the diagnosis of
their child's autism was a bomb that exploded their hopes and dreams.
The calendar of their lives was ripped off the wall and replaced by an
uncertain future as they began intensive intervention to help their
child, while they struggle to find hope and to regain their footing in
No longer is it hard to find people who have been touched by autism. I
couldn't help but notice that two of the first person accounts came from
the TIME family-arts reporter and parent, Amy Lennard Goehner, and Karl
Taro Greenfeld, sibling and editor of TIME ASIA. Everyone in the family
unit is deeply affected. As Greenfeld's father, Josh, wrote so
poignantly in A Child Called Noah in 1970, "There is a strain on any
marriage whenever a baby is sick. And we always have a sick baby."
- Just last week in my office, one mother sobbed as she told me
that her 10 year old son with Asperger syndrome had told her, "I wish my
imaginary friends were real and that I could play with them."
- Another mother recounted how her life seems like "one long day."
Her 8 year old son rarely sleeps through the night. His autism includes
seizures which have been elusive to control despite excellent care at
Children's Hospital of Philadelphia.
- In a group of fathers I meet with regularly, one man reiterated
how not a day goes by that he doesn't wish his son didn't have autism.
Like me, he would read TIME later. He had read enough about autism for
right now. Another man who had two boys with autism wept as he recalled
when his oldest son had stopped talking.
- A mother I have known for several years told her support group,
"I wish the autism was a thing, and then I could drag it out of him and
beat it to death. But it is a part of him and I love him." The group
concurred virtually in unison.
It gives my life and my son's life meaning to do the work I do. Still I
can't help but wonder, when I see a father with a small boy, what might
have been. Like Noah Greenfeld, my son is nonverbal and very limited in
what he can do. Like most other parents, I have learned to enjoy and
celebrate everything he learns to do. I am consoled by the reality that
people with autism teach the rest of us profound and spiritual lessons
in acceptance and in honoring the diversity of the human condition.
Yet there are things we must change. When my son was diagnosed, the
incidence of autism was widely cited as 5 in 10,000. Nobody I knew had
any knowledge or experience of it. It was a very lonely and dark time.
Now we are told that the incidence is more like 1 in 250 for various and
mysterious reasons. So many children have been affected, and so many
families have had their lives disrupted. I hardly feel alone anymore,
and I do laugh and smile, but I never wished for this much company.
The money being spent on research is a tiny fraction of what is needed.
For example, we need objective research about the vaccines independent
of the scientists who have financial links to the pharmaceutical
industry. We need answers about why certain parts of the country, such
as areas in California and New Jersey have much higher incidences than
other areas. We need to understand more of the neuroscience of autism,
so that effective drugs can be developed to reverse the condition
regardless of the cause.
Equally urgent is the need for state of the art services for children
and their families who have been struck by autism. Research has
demonstrated that early and vigorous treatment can make a huge
difference in the outcome for individuals affected by autism and other
developmental disorders. Alarmingly, a two year old child just
diagnosed with autism gets only a few hours of home based services per
week, while experts recommend 30 to 40 hours of programming. Parents
shouldn't have to beg and scream for services when their child enters
public school. Many of these schools are poorly funded, especially in
the inner cities, and have inadequately trained staff and few or no
opportunities for developing social skills by including children with
autism with their same aged peers.
It is heartening to have the issues in public focus. Now let's do our
best as a society to find solutions--before it's too late-for someone
Robert A. Naseef, Ph.D. http://www.specialfamilies.com, is the author of
Special Children, Challenged Parents: The Struggles and Rewards of
Raising a Child with a Disability.
Address: 514 South 4th Street, Philadelphia, PA 19147
If you have not read the TIME cover story you can see it at