Mail Call and Correction: March 14, 2005 issue
Can Early Warnings Help Treat Autism?
March 14, 2005 issue - Parents of children with autism and experts in the field responded en masse to our Feb. 28 story. One mother wrote poignantly of the "autistic fog" enveloping her son, while another related how her child "is my greatest joy as well as my most devastating heartbreak." Many pointed to possible chemical, environmental and genetic factors, and cited a variety of therapies that have helped them. One man offered hope: "The extent to which medicine and education can work together will determine the best course." The mother of a 55-year-old from "the first generation of autistic children" hailed her son for earning a college degree, holding down a computer-programming job and recently moving into his own apartment. "He has made this enormous progress in the decades when there were no facilities to help him." A girl with Asperger's asked for understanding: "I am autistic. I don't want a cure. I want people to accept that I'm different, not diseased."
As the mother of a precious 6-year-old boy with autism, I would like to say thank you a thousand times over for the coverage you have given over the years to this devastating disorder, including your recent cover story ("Babies and Autism," Feb. 28). As parents of an autistic child (and three other "normal" children), we sometimes get bogged down in the day-to-day of school, therapy, etc., and it is so nice to know that we are getting help raising awareness about autism. The more people know, the more people can help find a new treatment or cure, or even just understand my son's condition when they pass him on the street. Keep up the great work and thank you again.
Iowa Park, Texas
I never knew how sad I could possibly feel or how strong I could become until my two young sons were diagnosed with autism. It is hard to explain how it feels when your only two children slip away into a mysterious world where language and development completely regress. The anguish of looking your baby son in the eye when he doesn't see you is so profound that tears cannot take away the pain. The screaming silence of autism sometimes echoes so loudly in my house that it deafens me. Other times the incredible tantrums seem to shatter my patience and break my heart. How can anyone understand how it feels when your son doesn't call you "mama" anymore and doesn't respond to his own name? Sadly, I am not alone. I never thought autism would affect my family. Will yours be next? Let's support funding for autism research and cure this epidemic.
I want to thank Claudia Kalb and NEWSWEEK for your coverage of autism. As the father of three autistic sons, all under the age of 6, I believe it's important that the world understand that autism is an epidemic. Probably few of your readers walked away thinking this terrible disease will have an impact on them. Families with autistic children become overwhelmed both physically and financially, and have very little energy to educate and spread the word. I would like to express my gratitude to Suzanne and Bob Wright and their family for being public about their grandson's diagnosis ("Willing the World to Listen"). Even though autism does not have social or economic boundaries, few influential families have publicly come out. What the Wright family has done is monumental for the war on autism.
Marc A. Augier
Chagrin Falls, Ohio
I applaud your coverage of autism. I wish it had come out 11 years ago when our now 14-year-old son was diagnosed. Talk about wacky therapy. I think we tried most of it. You will attempt almost anything if you think it will work even a little. We tried using Secretin (a hormone from a pig's pancreas), retraining the hairs in the ear so that he was less sensitive to sound, Interactive Metronome therapy and five to 10 other things that were promised to have an impact. My advice is: stick to the speech therapy, occupational therapy, drugs that help and all the play therapy you can afford. Maybe the most important is to have your child around typical kids as much as possible. Perhaps our son's most effective therapy was having a sister five years younger who would not let him obsess or stay in his own world. He has come a long way, but our battles are ongoing, as we have to constantly remind people of all he can do and to look past his quirkiness. I share my commiseration with the Wrights and their daughter, and I thank NEWSWEEK for helping to bring awareness to autism.
As a pediatric psychologist, I have worked with many autistic children. My practice has always been nontraditional in that I see children in the natural environment. I talk with parents in their home, work with the children in the home, school, community, etc. I was surprised to read that "one of the newest [treatments] on the block [is] Relationship Development Intervention, or RDI." I have used similar methods for the past 15 years. and I could never interest anyone else to practice this way. To work in the environment means you have to travel around instead of sit in an office. This, in turn, means fewer patients per day and, unfortunately, places some limitations on billable time. On the positive side, I have a very real-world view of these children, their families and the problems they are dealing with. I believe this has led to much more effective treatment plans. Additionally, since I am frequently in the schools, I am able to work with the teachers and staff, and advocate for the children at Individual Education Programs that are more collaborative. I am glad to hear that the rest of the world has "discovered" this "new" treatment approach.
Studio City, Calif.
If the Bush administration really wants "No Child Left Behind," it will force the insurance industry to stop discriminating against children. As a mother of two children with learning disabilities on the Autism Spectrum, I could fill a congressional hearing room with just the parents I know who've had their speech-, occupational- and physical-therapy claims denied by their insurance company because benefits apply only to stroke or accident victims and the elderly. Without these therapies, kids with developmental disabilities simply can't catch up to their peers, and at $90 to $150 an hour, many parents can't afford necessary therapy without insurance.
Maureen Mulqueeny Larson
After reading your article on autism, I decided that it was time to watch "the tape"—a video I shot of my then 21/2-year-old son during the weekend that my husband and I realized he was autistic. We barely remember the child in the video. That child engaged in repetitive, inane behaviors, threw uncontrollable tantrums, spoke gibberish and was completely unaware of the world around him. That was last May. Today our son is a happy, loving child who is beginning to speak in four- to five-word sentences, understands emotion, responds to his name and does what he is told. He currently attends a state-funded school for children with developmental delays, and his teachers and therapists all agree that he should attend regular preschool in the fall. Imagine my dismay when I read your article and saw little about the benefits of a gluten-free or casein-free diet, supplements and the removal of heavy metals. These are the things that are bringing our child back to us. In the nine months that we have known about our son's autism, we have aggressively fought back with the help of the Defeat Autism Now network. There are many, many formerly autistic children out there. Ours will be one soon.
Jenny and Jim DeMaria
As a professor of special education and a parent of a child with Asperger syndrome, I think it is important for readers to understand how far we've come in so short a time. While we still are unsure about the specific causes of the wide range of Autistic Spectrum Disorders, the increase in the number of individuals diagnosed is due in large part to a broader definition, enhanced awareness and expanded early-identification efforts. Although having a parent who happens to have a Ph.D. in special education, my son was not identified with Asperger syndrome until the age of 15 (he is 22 now). Despite my supposed access to information, my family struggled and suffered until a correct diagnosis was finally made. If you have a relatively high-functioning child, a diagnosis of Asperger syndrome or Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) will be more difficult to make and will almost certainly occur at a later age than that of youngsters with classic autism. Also, families should beware of bandwagon treatments such as facilitated communication, which do little but break the hearts of parents. Knowledge is incremental, and as desperate as one's situation may be (I've been there), common sense, love, patience and advocacy remain the best approach.
Ohio University, College of Education
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