Response to 'Autism: The hidden epidemic?'

I know the purpose of your series on autism is to help parents with young children get help. But so far you've treated it like a new problem, neglecting an important overlooked community — adults with autism, who still struggle for medical care, job placement, and recognition from the community. All your attention comes too late for them. They're still suffering.
Our 22-year-old son Jeffrey was finally diagnosed and labeled as autistic in 1999, at age 17. In 1990, after eight years of tests for everything from lead to food allergies to Fragile X syndrome, a psychiatrist at Emory University told us our son had eight of the 14 markers for autism, but refused to diagnose him as autistic.
He said he did not want to have our son saddled with that label since it would diminish the support he received in school. So instead, he was labeled moderately mentally handicapped with a lower IQ, ADHD, and autistic-like tendencies. Because the autism wasn't labeled, it wasn't treated or addressed. In the end, THAT was a greater disservice to him than calling him autistic. The system today still doesn't know what to do with adults with autism. People like my son have a hard time finding a place in society, and few people care. We're blessed that our son is healthy, without any other medical concern. He has a full life working in a caring day facility for mentally challenged adults. He has friends and a sweet girlfriend, too. But no one knows about this group, and thanks to your series, no one will. You missed a great chance to help some folks who really have no voice and needed your help, too. Wish I could say I'm surprised.
— Ginger Carter

I've been watching your specials about autism. I especially liked the segment this morning about the effects it has on the family. I have one concern, though. I think the "recovery" stories are wonderful. Especially for the families of the loved one who has recovered from autism. But, these families represent a small percentage of the millions that are afflicted with this condition. Most do not recover; and it grieves me terribly to say this. Most do, however, make progress if treated early and intensely.
The reality is that many families, such as mine, are not located in an area where we can recieve the intense therapies and are not financially able to get these services for our children. So, we take what we can get, which often is not nearly enough or not qualified enough. I have no doubt that my son could make more progress if given the intense therapies by a trained individual. Cole's teachers love him, and are very good to him, but I often feel like they're basically just baby-sitting him most of the day. But, what do we do? Our only option is to drive him to a facility an hour and a half away, move, or enroll him in a 24-hour facility 2 hours away from us where we wouldn't get to be with him except on special visitation days.
My point is, you need to realistically show the other side of the spectrum, so families like ours don't keep beating ourselves up because our child isn't "recovering" from autism. Yes, we should (and are) still hopeful, but there's a tremendous amount of frustration and guilt when you try to do everything you can, and you see only tiny amounts of progress over YEARS, not weeks. And yes, we do still celebrate those victories — no matter how small.
— Jacque Hennington

I am the mother of a 14-year-old with Asperger Syndrome. My husband and I watched our local news yesterday and were very upset when they said it was every parents' nightmare that their child was diagnosed with autism. We feel we are blessed to have our son. Our struggle is not with our son but with the people who don't understand, like the insurance companies who don't cover autism or the lack of doctors in our area, or the school that handcuffed him because he wouldn't go to class. Why don't you do a report on these subjects so other parents are aware of what can happen to their child in school? No one wanted to hear our story when our son was handcuffed and what it did to him. It forever changed him and it could happen to anyone's child. I hope someday someone will listen, until then I will still fight for my son's rights.
— Q Debora

Re: Inside the treatment maze
I enjoyed your article on autism treatment. I am a licensed psychologist in California specializing in applied behavior analysis. I wanted to correct a statement made by Ms. Lord in regards to lack of replication of Lovaas’s research. So that I do not provide any misinformation, you could contact him directly, and I believe he will inform you of replication studies that have been done in the last several years. Also, one should point out that the scale of the treatment study done by Lovaas (over two years of intensive treatment followed by follow up years after) is non-existent in regards to autism treatment for all other treatments. In other words, studies of this type of longitude are not usually done. So to claim that it has not been replicated as a fault would apply to all other social environmental treatments also.
— Ennio Cipanni

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