April 2nd, 2010
09:06 AM ET

3 questions: Autism is not just a childhood disorder

Karl Greenfeld grew up in Los Angeles as the older brother – by two years – of perhaps the most famous autistic child in America. Noah Greenfeld was the subject of three popular books – “A Child Called Noah,” “A Place For Noah,” and “A Client Called Noah” - written by their father, Josh, a successful screenwriter.  The books, as well as widely read magazine articles, trace the early history of autism diagnosis and treatment, through the eyes of one family desperately seeking help for Noah. Those efforts, and the efforts of families like the Greenfelds, eventually led to therapies that offer some hope to families today. But not for Noah Greenfeld. Now 43, Noah does not speak and lives in an assisted living home near Los Angeles.
[cnn-photo-caption image=
http://i2.cdn.turner.com/cnn/2010/images/04/01/karl.and.noah.jpg caption="Karl and Noah in childhood."]
[cnn-photo-caption image=
http://i2.cdn.turner.com/cnn/2010/images/04/01/karl.and.noah.adults.png caption="Karl and Noah as adults."]

Inevitably – Karl became at times an afterthought, as Noah sucked up the family’s time and resources. Along the way, he gained a keen appreciation for his parents’ struggles and a sharp eye for the ups and downs of living with a severely autistic child. A magazine writer and editor and the author of four books, he never wrote about autism until now – in “Boy Alone: a Brother’s Memoir.” He spoke with CNN Chief medical correspondent Dr. Sanjay Gupta.

Gupta: What is autism? How do you describe what autism is?

Greenfeld: I see autism as my brother. My brother, Noah, is a fact of autism for me. I find Noah to have very little in common with Temple Grandin. I find Noah to have very little in common with high-functioning Asperger’s diagnoses. And in some ways, I wonder if the expansion of diagnostic criteria to make autism a spectrum disorder has almost diluted the meaning of autism. We’re at a point now where you can take someone who’s a low functioning, non-verbal person who really needs 24-hour supervision, to someone who’s considered a genius. That’s why I wonder how useful it is, this very wide spectrum diagnosis.

Gupta: A lot of people, when they think of autism, think of children, young children. Noah is obviously in his 40s now. What is that like?

Greenfeld: I was surprised when I really seriously began researching autism again, when I was working on "Boy Alone." I was surprised at how widely held the notion that it is a childhood disorder. That somehow you grow out of it, because, you know, Noah’s disability was so profound that I’ve spent more time with him as an adult autistic, than ever I did with him as a child. So, the one thing people seem to not be aware of is that there are a great number of adult autistics. And, if this epidemic of diagnosis is true, there are going to be more adult autistics. And one thing I tried to write about in this book is to talk to families that maybe have a teenaged autistic son or daughter now, and talk a little bit about that journey in adulthood, and how your life as a parent or sibling of an autistic person to some extent, always revolves around that person.

Gupta: What did you think when your father wrote those books about Noah?

Greenfeld: My father would tell me that one of the reasons he was writing about our family was that so other families didn’t feel alone.  I think "Boy Alone"  was my attempt to talk to family members, to talk to brothers and sisters of an autistic child and also let them know they’re not alone. And especially as you get older, as you’re a grown up and you have your own life and you still have to integrate this autistic sibling into your life, it’s challenging. But I wasn’t able to write this book until I had children of my own. Until I saw my daughters and understood their sibling relationship and said, “Ah, that’s what brothers and sisters act like and look like,” and I had something to compare with my own childhood. I couldn’t do this until I was at the point in my life where I understood family a little better, because I had a family. And I understood, oh, this is how my family was atypical.

To see more of this interview, please tune in to "Sanjay Gupta M.D." on Saturday and Sunday at 7:30 a.m. ET.

April 2nd, 2010
08:48 AM ET

Latest on autism research

By Madison Park
CNNhealth.com writer/producer

April 2 is U.N.-declared World Autism Awareness Day. A life touched by autism is one forever in search of new information, and answers to the questions "Why did this happen?" and "How can I help my child?" Here's a brief wrap of some of the latest headlines about the mysterious neurological disorder, which affects as many as 1 in 110 children, according to the Centers for Disease Control and Prevention.

In March, a federal court ruled that the evidence supporting an alleged link between autism and a mercury-containing preservative in vaccines was not persuasive, and that the families of children who have  autism were not entitled to compensation. Vaccine court finds no link to autism

In February, a notorious study that linked the measles, mumps and rubella (MMR) vaccine to autism and digestive disorders, was retracted 12 years after it was published.  Its lead author Dr. Andrew Wakefield was found to have acted unethically in conducting the research by the British entity that oversees doctors.   Medical journal retracts study linking autism to vaccine

As research  indicates that the rates of autism are increasing and that about 1 percent of the children in the United States have the disorder,  there is an increasing body of science looking into causes and contributing factors to the mysterious condition.

Here are some major findings according to Autism Speaks, a leading advocacy and education organization.

1) Two major studies using different methodologies reached similar conclusions: autism is on the rise.  Four years earlier, autism spectrum disorder was found to affect 1 out of 150 children, but more recent data suggest it's closer to 1 in 91 or 1 in 110 children, depending on the study.  Research also found that autism is four times more common in boys than girls.

Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US

Prevalence of autism spectrum disorders – autism and developmental disabilities monitoring network

2) Delivering early intervention programs for children with autism improved IQ, language skills and adaptive behavior even for those as young as 18 months.

Randomized, controlled trial of an intervention for toddlers with autism: the Early Start Denver Model

3) An autism genome study found a genetic variation associated with the genes cadherin 10 and 9, which are responsible for forming nerve connections. This suggests abnormal interactions between neurons may cause the deficits seen in autism.

Common genetic variants on 5p14.1 associate with autism spectrum disorders

4) Researchers analyzed submicroscopic DNA deletions or duplications called copy number variants in the autism genome and found a new cellular pathway called "ubiquitin pathway," in the pathology of autism.

Autism genome-wide copy number variation reveals ubiquitin and neuronal genes

5) A study demonstrated that combining drug and behavioral treatments were more effective than drug treatment alone for reducing challenging behaviors.

Medication and parent training in children with pervasive developmental disorders and serious behavior problems: Results from a randomized clinical trial

For the complete list and expanded explanation, visit Top 10 Autism Research Achievements

Editor's Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation.

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Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.