“Doing anything is better than doing nothing,” is one of the more common expressions in our culture. Many people said that in response to 9/11 (e.g. authorizing government officials to incarcerate without charges anyone with dark hair, dark eyes, olive skin and who appeared to be of Middle Eastern origin) and to giving our children with autism chemical agents designed to extract heavy metals from their bodies, metals which they generally don’t have in their bodies in the first place.
The premise of this statement ("doing something is better than doing nothing") is that someone is seriously considering doing nothing in response to a situation or condition. Virtually never is doing nothing an option that anyone is seriously entertaining. It’s just that what is being offered isn’t appealing to the speaker, hence from their vantage point amounts to nothing. They are looking for something more dramatic that will eliminate their fear and abolish their pain. The bogus “doing something” argument avoids acknowledging their fear.
Based on the mistaken notion that “doing something is better than nothing,” American parents of children with autism often expose their youngsters, to a wide variety of ineffective treatments by the dozens. None of these treatments have been shown to produce clinically measurable improvements in core symptoms of autism in controlled studies, or improved quality of life for the child as determined by an independent, unbiased observer.
• Aquatic Therapy
• Auditory Integration Therapy (Tomatis Method, Berard Method, Earobics
• Casein and gluten free diets
• Chelation (usually EDTA, DMPS or lipoic)
• Chiropractic manipulation
• Craniosacral therapy
• Dolphin Assisted Therapy
• Doman Delacado Patterning
• Facilitated Communication
• Herbal therapies (e.g. Ayurvedic Treatment)
• Hippotherapy (therapeutic horseback riding)
• Homeopathic Therapies (extremely low dosages or chemicals, minerals and toxic substances such as aconite, Belladonna, Pulsatilla, Chamomilla, Sulphur, Arnica, Mercurius)
• Hyperbaric oxygen
• Intravenous Immunoglobulin
• Magnets
• Megavitamins and minerals
• Music Therapy
• Nystatin, Flygyl or Diflucan (for hypothesized fungal infection)
• Psychoanalytic and Humanistic Play Therapies
• Secretin
• Sensory Integration Therapy
• Sugar free and dye free diets
• Vision Therapies (Irlen lenses, Eye Exercises to enhance visual attention, Rapid Eye Therapy, Iridology, Ambient lenses, or Yoked Prisms)
The dollar costs for these therapies vary widely, from $40 for a two week supply of an herbal remedy, to $1200-2000 for 10 hours of auditory integration therapy, $3750 for 30 chelation sessions, and $11,800 for three weeks at five times per week of dolphin assisted therapy (excluding transportation, meals and lodging). I shudder to think of the total amount of money average parents of a child with autism spend on these ineffective treatments from the day of their child's diagnosis to their adulthood. And yet there is no objective evidence they do any good for the children receiving these remedies.
Some of these “therapies” are probably fun and may make life more interesting for children on the autism spectrum, like aquatic therapy, horseback riding and dolphin therapy, but they have nothing to do with overcoming core autism symptons. Most of the other treatments cause no harm, other than complicating the child's life with ineffective activities and wasting the parents’ money. But some can cause gastrointestinal and other problems, such as some herbal therapies, megavitamins and minerals and antifungals (which can interact with other medicines). Others can be very harmful, such as chelation, immunoglobulin and hyperbaric oxygen treatment. The Center for Disease Control’s MWMR eNewsletter (March 3, 2006 / 55(08);204-207) reported three chelation deaths in the US, and there was a subsequent reported death of a child with autism in England. There have been reports of acute liver failure and heart toxicity resulting from immunoglobulin treatment. The most common adverse effects of hyperbaric oxygen are claustrophobic panic attacks, broken eardrums and pulmonary edema. Desperate people try desperate solutions.
There are other costs as well. Parents who persistently search for autism’s magic bullet find it difficult to make a serious commitment to any one treatment, including those that are actually very effective. The search is constantly on for a new and better treatment. While they are learning to use a new prompting strategy to teach language to their child, with one half of their brain, they are thinking about the email they received from another parent about a new treatment for "leaky gut", with the other half. Nearly every child with whom I have been involved in providing home-based early intervention services, is also being schlepped to private occupational therapy, speech therapy, early childhood special education, social skills sessions, and often one to two other lessons or therapies per week. There is no information available that indicates such a complex array of therapies and educational programs is beneficial. Little time remains to participate in, and follow through with therapies that really do make a difference, like speech or behavior therapy, or to enjoy typical family activities. Mom’s life is spent frenetically transporting her child with an ASD from therapy to school to their lesson and then to another therapy, getting ready for dinner, toileting, bathing, putting the child in bed, and then collapsing exhausted, wondering how she will make it through another day of her child’s therapies.
For years, parents often keep slogging away, trying one after another new treatment. In due course, they usually conclude that most of these treatments to which they have been exposing their child have been a waste of time and money, and may actually be causing problems (e.g. casein-gluten free diet is often associated with feeding problems; minerals, vitamins, enzymes and other supplements can cause diarrhea or constipation).
The net result is growing parental cynicism about all treatments. “Nothing really works,” I’ve heard parents say, meaning that the various somethings they have been trying weren’t making a difference. But the unglamorous, pain-staking, gradual, labor-intensive behavior therapy that their child has been receiving, that is really making a tremendous difference in her or his life, hasn’t entirely solved Mom and Dad’s problem. All too often, Intensive Early Behavior Therapy was that "nothing" alternative they had in mind when they embarked upon their search for the cure for their child’s autism. It offered no quick fixes and lacked pizzazz. Their child still has an autism spectrum disorder even after highly effective intensive early therapy, though it may be in a much milder residual form that ordinary people wouldn't recognize as autism. While that’s all well and good, to many parents, that’s not nearly good enough.
Parents are overwhelmed by The Presence of Absence.* When we speak with parents of our effective treatments for their child with autism, our language eludes the reality of what they are experiencing. They nod in acknowledgment of our graphs and percent improvement scores revealing their child's progress, but silently wonder, “Will he ever fall in love?” But we must talk and write about our journey with them as best we can, as honestly as we can, even though we know it will be disappointing. Our words cannot encapsulate and retrace the reality of their loss, but we must speak and write knowing that our language is not adequate, knowing that it is impossible to heal the wound, but that what we have to share with them will eventually provide them with more than the vague hope of the illusory somethings that they hoped would be better than nothing.
[*The title of a symposium at the Northeast Modern Language Association conference last year captured the essence of parents’ dilemma, “The Presence of Absence.” The conference presentations dealt with how one comes to terms with the Holocaust in literature, but the concept applies equally to this context.}
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Bio
I am a psychologist by training and a writer and occasionally a water colorist by inclination. My day job is as Supervising Psychologist of the Minnesota Early Autism Project (MEAP) located in Maple Grove, MN, a northwest suburb of Minneapolis. At MEAP I evaluate children for autism services, and supervise intensive early behavior therapy services for young children with autism spectrum disorders.
In my former life I was a researcher and science administrator focusing on developmental disabilities and psychopharmacology. I was previously Director of the John F. Kennedy Center at Vanderbilt University and for many years a faculty member in several departments at the University of Minnesota, Minneapolis, including psychiatry, psychology, pharmacology and the special education program.
I have served on National Institutes of Health committees reviewing grant applications as well as policy matters. I travel a good deal presenting invited lectures and workshops. I have made presentations in 47 states and 14 countries outside the US and published 230 articles and chapters and 30 books. My most recent books deal with autism spectrum disorders ("Making Sense of Autism" (2007); "Straight Talk on Autism" (2008); "Freedom from Meltdowns: Solutions for Children with Autism" (2008); all published by Paul H. Brookes Publishing Company). They are intended for parents of children with autism, teachers and therapists who work with kids with autism.
I am married to Anneke Thompson, who is doting grandmother, a retired special education teacher, avid reader and quilter. We have four adult children, Rebecca, Jennifer, Andrea and Peter, and 7 grandchildren, who never cease to amaze us with their individuality and unique achievements. One of our grandchildren, Michael, age 13, lives in Eastern US and has an ASD diagnosis.
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