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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 life.
  • 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.
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."

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 else.

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.

Telephone: 215-592-1333
FAX: 267-200-0806
Address: 514 South 4th Street, Philadelphia, PA 19147
E- mail: rnaseef@alternativechoices.com

If you have not read the TIME cover story you can see it at http://www.time.com/time/covers/1101020506/

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