Reader response to the NBC News/MSNBC special report 'Autism: The hidden epidemic?' was enormous. Many e-mail comments were from parents who have a child or children affected by autism. Others reflected concerns about the causes of the disorder. Below is a selection of the e-mails we’ve received. Some have been edited for length. When readers refer to a specific feature, a link to the story has been provided.
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I cannot thank you enough for reporting on autism. It is a devastating disorder. When first diagnosed, you are overwhelmed by the knowledge that your child will not reach many of the obvious, and subtle, milestones most children blithely achieve: attending a regular education class, participating in Boy Scouts, playing with the children on the block, or sharing thoughts about — anything.
Many of these are hopes and dreams that you did not know you had, until you realized they were lost. But, in their place are hopes and dreams you never thought you would have — goals and milestones that your child has or will or may achieve. And, each achievement is wonderful.
— Catherine Stevenson Garcia
Your features on autism have been wonderful. As the mother of autistic triplets (2 of 3 diagnosed) I am pleased to see this topic discussed. Parents do feel very isolated and it's nice to know that so many others share the pain and frustrations of having a child diagnosed. I am also glad to see ABA therapy being stressed in a few of your segments. In my opinion it should have a place of its own as the best treatment for this disorder. Vitamins and diet are shots in the dark ... but this is a proven educational method. In three months of the ABA therapy my son went from not communicating at all to communicating using around 20 or so words! As a parent of autistic sons I can tell you this is a major break through. The next huge push will be for ABA therapists in the public schools. Parents will demand to have the therapy used that their children have received in the early years. I consider myself lucky, both my sons are rather high functioning.
P.S. Please show a child having an autistic melt down so my mother-in-law will appreciate what we go through on a daily basis.
— Veronica Scantrus
I will be following this story closely as I have not one but two beautiful nephews with autism. I would love to see some heavy debate about the (what I consider from the bottom of my heart) not merely possible but probable connection between the vaccine program and the rising rate of this "disorder." My nephews were absolutely perfect babies. Perhaps the reason autism crosses all cultural borders is because the vaccine program does too. I have read the Japanese wait till their children are two years of age before administering vaccines in order to let the baby's brain and nervous system develop uninterrupted. Really, think about the increasingly numerous shots that are given to our children. It was only recently (couple years?) that the toxic mercury (thimerosol) was removed as the primary preservative from the vaccines. I don't know ... it's just such a magnanimous assault on all of us as a society if there is any truth to this theory that is being dismissed or covered up. Perhaps it takes an NBC executive's own child or grandchild being affected to get some truth out to us as catastrophic as it might be? Let the government now take financial responsibilty for allthe vaccine damaged children, not just those who suffered damage from the once dirty vaccine known as the DPT shot.
If you would look into the studies before NutraSweet was placed on the market, I think you will find the reasons for autism. The studies peformed on rats will give clues to what is taking place. Then do a study on all the parents who have children with autism and find out how much NutraSweet they consumed before they gave birth. I recieved all this information before NutraSweet was placed on the market and was told never to consume this product. This is food for thought, and guess what? NutraSweet in not food. You will need to check companies in California for the results of the testing. Go back to the early 70s and before. Good luck.
— Sallie Underwood
As autism cases soar, a search for clues
I found your article to be very interesting. Of particular interest was the seemingly drastic rise in autism diagnosis. It seems to be the "in" diagnosis. You can't read a newspaper or pick up a periodical without reading something about it. A couple years ago it was "ADD." My wife and I are a couple in our 30s and have a 2 1/2 year-old boy. Similarly, we have a couple of friends with babies of about the same age. One of these couples' son has been diagnosed as having slight autism. Their doctors have this couple running from one therapy session to another. Five days a week. Now I don't pretend to be a doctor or play one on TV for that matter, but I don't see in my friends' child a tremendous difference between him and our child (who has not been diagnosed with the disorder). Again I spend far more time with my child than with theirs. But my wife and I don't see it. We feel that the experts are painting with a REALLY WIDE BRUSH on a VERY BIG CANVAS. Severe autism, slight autism, high-functioning autism, autistic-LIKE tendencies. A jump from 5.5 cases per 100,000 to 44.9 in such a short time span is epidemic. No one could deny that a jump in any rate (Cancer, AIDS, Down Syndrome) as drastic as that would set off major alarms. Could the "drastic rise" be in part to some misdiagnosis or the NEED to diagnose something? Why must every child be "Something." Children develop differently. Some are quicker to learn than others. Some develop intellect but are lacking in social skills. Some have better motor skills than others. Everyone's different. Of course, an expert will tell you that my friends' child would not have any of the skills he has today if it weren't for the "intensive" therapy he is undergoing. And there is no arguing with an expert. If you do, you're in denial.
Sometimes, when you get sick, you go to the doctor and he prescribes something, and in 5-7 days you feel better. Sometimes, when you get sick, you do nothing and in 5-7 days you feel better, too.
— Frank Prano
Having a child diagnosed with autism, I have been following your various news stories this week with much interest. One of the most frustrating issues that I hope will also be addressed is convincing the medical insurance companies that autism is now considered a "mainstream" medical condition that should be covered. At best, some of the biggest insurance companies will only partially cover a limited number of therapy visits.
Definitely not enough to do justice in giving the child the help they need.
Hopefully, you can interview some of the insurance company CEOs to put them on the spot for commitment. I would like to recognize organizations such as Denver Options, who have been wonderful in providing assistance.
— Ron Sherman
Perhaps the diagnosis of autism is soaring because it is misdiagnosed and overdiagnosed far to often. With the obsession in this country with standards and testing it is no wonder that children who talk later than "normal" are labeled as autistic by over enthusiastic clinicians and school staff. Many times children whose only problem is delayed receptive and/or expression language development will quickly be labeled autistic. May I suggest that you read information about the study and work that Dr. Stephen Camarata of Vanderbilt University is doing on late talking children? It may enlighten you and help explain why so many children are labeled now as autistic. I would also suggest that you read "The Einstein Syndrome" by Dr. Thomas Sowell.
— Sharon Knecht
After reading the articles regarding the increase in autism — especially in Silicone Valley, I can't help but wonder if there is a relationship between autism and the use of some illegal drugs. I say this because I have a grandson who has been diagnosed with Asperger Syndrome and I have reason to believe that his mother was smoking pot during her pregnancy and that she had been using it for many years prior to her getting pregnant. Also, the father was a long time user of pot as well. Both parents continued to smoke pot after the birth and I believe that the infant was exposed to the second hand smoke. Silicone Valley has a reputation for attracting people who have used and continue to use drugs. I may be all wrong, but I think that there is a common denominator here that should be investigated.
— Carolyn Mosley
Thank you, thank you, thank you for running your series on autism awareness. My beautiful son, John, was diagnosed a year ago at the age of three. John had no language before we began our journey of ABA therapy. With a lot of time, energy, money and faith he is developing into a "typical" four-year-old. I often wonder if the flu shot or rhogam shot I received during my pregnancy contributed to his disorder. I do know that if we don't figure out what is causing this devastating disorder we will have a generation full of adults who can't function on their own. My son is proof that early, intensive therapy is key to this crippling nightmare and I thank you for devoting time and effort to awareness and understanding.
— Susan Pero
My name is Cynthia Brown and I reside in Cheyenne Wyoming after moving from New York City in October. I am the divorced mother of an 8-year-old child with autism who is in the majority of families that struggle to raise their children alone.
I am disappointed in the stories that I have seen so far. I feel that by writing this letter, I am speaking for poor minorities, single parents, grandparents who struggle to raise their children with the limited resources that we have. I am a native of the Bronx who has had to make the difficult decision to move 1,800 miles away from family and friends so that my son could have a better life. These are the population of families that are being ignored, I cannot relate to Dan Marino, he is a millionaire that could well afford the best for his son, unfortunately, this is not the case for a majority of us. My son has had the early intervention and still cannot carry on a full conversation. Unlike Dan Marino, I cannot afford a private therapist to come into my home and work with my son. My son was diagnosed at 14 months old and while most parents have time to grieve, I had to figure out what I needed to do to help my son.
Social Security is another issue not covered. In a time where the divorce rate is at its highest, me along with other parents have had to depend on Supplemental Security Income to meet the cost of raising a child with autism. I was receiving $158 per month in SSI payments along with child support and food stamps and still was not making ends meet. I did not have anyone who could care for my son after school so that I can work and finish my education. I was not making it and I needed to make some decisions for me and my son. This is my story and the stories of many people like myself that struggle to raise their children with limited incomes and resources. These are the people that we need to hear from.
— Cynthia Brown
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
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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