Autism affects one out of 150 children in the United States. Every time I look at this statistic, I’m amazed by the number of families dealing with this challenging issue.
As most of you know, I deliver babies for a living. I have certainly delivered more than 150 children in my lifetime, yet I’m always puzzled when I hear that one of those children I delivered has autism. Everyone’s pregnancy is different – some were vaginal deliveries, some Caesarean section – but I’ve never been able to find a common theme that would lead me to believe that autism would be present after birth.
Autism is an issue that really hits home with me, because in my own family, I have three beautiful children – one of whom is autistic. I diagnosed Ryan at the age of two, and my suspicions were confirmed when he received a full workup by developmental pediatricians in New York City.
There’s no doubt having an autistic child represents tremendous challenges for both the children and their parents, but in my experience, it has brought me closer to my family and has given me an appreciation for how the human brain develops and the uniqueness of each child it afflicts. When Ryan was 3 years old, he could not speak or concentrate for long periods of time. Today, at the age of 12, he speaks two languages fluently, and I know that he will develop into a beautiful young man, thanks to early childhood intervention.
There are still so many unanswered questions about what causes autism and other developmental disorders on the spectrum. So it is vital that we continue to research and educate ourselves in the hopes that we may begin to understand the challenges that these children and their families continue to face with each passing day.
For the past 10 years there has been a champion for children, parents and educators who are affected by autistic spectrum disorders. Autism Asperger’s Digest was started to provide “real life information for meeting the real life challenges of ASD.” These challenges come in the form of impaired social communication and eccentric activities and interests; often leaving families looking for practical strategies to raise their autistic children. This magazine has strived to provide proactive solutions for those affect by these conditions in a positive way.
Early this year, Fox News Health established a partnership with Autism Digest to help shed more light on this condition, which continues to affect so many children and adults in this country and around the world. We support Autism Digest in their efforts as they explore creative strategies and the latest research that can help families and community members with ASD.
I spoke with Veronica Zysk, managing editor of Autism Asperger's Digest, about where the ASD community has been and where it’s going.
Dr. Manny: What is it about autism spectrum disorders that propelled you into this field?
Zysk: I think it was kismet, my fate. I was a psychology major in college in the early 1970s and always fascinated by the different ways people think, feel, and relate to others. A few decades later life came full circle when I accepted the position as executive director of the Autism Society of America in 1991. And that’s where the real education began: talking with scores of parents, the professionals in the field, and more and more adults on the spectrum. This is a fascinating disorder, and an equally interesting community of individuals. It’s never dull!
Dr. Manny: When you started the magazine in 1999, what kinds of resources were available for parents and teachers?
Zysk: Not much. Publications that did exist (a couple of research journals) were geared to the scientific community, full of technical jargon and difficult to understand. Nothing existed for “the rest of us.” Our mission became filling that void for positive, proactive, use-it-today information for parents and educators. It remains our focus today.
Dr. Manny: How have you seen the medical establishment’s view of ASD change over the last 10 years?
Zysk: There’s a much better appreciation for the vast spectrum of differences that fall under the umbrella of autism spectrum disorders. Some professionals are starting to even use the term “autisms” – acknowledging that many subsets of the disorder may, in fact, exist. There’s more acceptance now of different treatment models, and acknowledging both the outer behavioral and inner biomedical aspects of the disorder.
Dr. Manny: Who writes for your magazine? What is your strategy in covering all the facets of ASD?
Zysk: Contributions come from parents, educators, medical professionals, service providers, and of course, people with autism or Asperger’s. One of the beliefs upon which the AADigest is based is that this is a diverse community, with diverse needs. We keep an open mind towards emerging ideas and topics in the field. As the community and its needs evolve, so does our magazine.
Dr. Manny: What have been the most encouraging success stories you’ve seen?
Zysk: There have been so, so many! And, not just about the kids. Autism can change lives, for the better and the worse. The adult perspective is so important. I’ve witnessed families who started out feeling devastated, terrified and immobilized transform into adults and children who come to appreciate what it means to love unconditionally, work as a team, be flexible in handling challenges, respect differences and celebrate even the smallest of achievements…not just towards the child with autism, but themselves and others. That’s powerful change.
Dr. Manny: What is the most important issue facing the ASD community?
Zysk: Today, I’d say it’s the explosive growth in the number of kids being diagnosed. It’s now 1 in every 58 boys. Services for these kids are nowhere near what they need to be. And, directly related is the growing number of kids of years ago who are now becoming adults. As a society, we’re just not prepared and the needed changes are coming too slowly.
Dr. Manny: How will we beat this condition?
Zysk: I guess it depends on how you view ASD. An entire movement - neurodiversity - is blossoming that is anti-cure. Opponents advocate research aimed at finding a way to eradicate autism and the devastating effects it can have on some individuals. I think we’ll make the greatest gains by embracing the idea that differences are not necessarily deficiencies, and that we have a long, long way to go before any of us really understand what ASD is, and is not. As Einstein said, “The important thing is not to stop questioning.”