In writing about Dr. Hanson’s article for Children’s Hospital of Boston, “Is Autism Really on the Rise?" (HERE) my intention was to draw attention to the serious disconnect between how researchers perceive autism and how our children experience autism. Nowhere is this disconnect more apparent than in research priorities. All too often we see autism research centers conducting almost entirely genetic/ face processing orientated autism research which hugely diverges from the actual research and treatment needs of ASD children, many of whom are chronically ill and have no place to go for medical treatment.
Matt Cyr of CHB wrote that I implied that CHB conducts the research they do for financial gain. I never said that and do not believe that to be the case. I see no nefarious motivations behind the institution’s dated and irresponsible autism research agenda. I think CHB is simply doing research that is safe, noncontroversial and relatively easy to get funded and published. However, this strategy has not served our children.
Let’s look at research CHB is currently conducting:
- Spatial Processing, why autistic kids like electronic media
- Face Processing
- Let’s Face It (more face gazing)
- 88 Middle Eastern Families and their genetic clues to autism
- Tuberous Sclerosis face processing vs regular autism and face processing
I wish CHB’s researchers and physicians had attended the most recent National Association of Autism conference. Unlike research hospitals, the NAA is operated by parents and parent physicians who live with and treat autistic children everyday. Here is what CHB missed:
- Dr. Julie Buckley (also and ASD parent) “Treating Autism as a Medical Disease”
- Dr. Theo Theoharides, “Autism as an Emerging Neuroimmune Disorder” – fascinating and treatment orientated
- Dr. Martha Herbert, “Autism as a Chronic Active, Biological Process”
- Dr. Dan Rossignol (also an ASD parent), “ Seizures and Autism” why the overlap and how to treat the problem
- Julie Matthews, M.A., “Dietary Interventions”- offering and advanced understanding of nutrition, food choices and essential nutrients to improve health and relieve many ASD symptoms
This is the kind of research that will help our children and that autism community really wants to see funded. Doesn’t that beat spending millions studying 88 Middle Eastern families?
We need help for our children today. We also need targeted causation research exploring environmental triggers. Approaching autism as a brain and or genetic disorder will not yield the causation evidence we need. Autism’s exponential increase is not genetically driven. Too many children are developing normally and then rapidly regress into an acquired form of this disease, much like HIV. HIV researchers did not spend all their resources studying who was more genetically prone to acquire HIV. No, they quickly isolated the trigger, researched how the disease affects the body and brain and focused on a wide array of treatment interventions.
The researchers at CHB surely work hard, doing so for modest wages and want to help the autism community. Unfortunately their research paradigm is at least a decade out of date. Autism in 2009 is not mainly a heritable brain disorder, characterized mainly by social deficits. I wish! Autism today is a total body disease, one that affects the brain, the GI system, the immune system, liver and kidney functioning…CHB doctors must make an effort to educate themselves about the immediate and profound needs of our children and the need for more biomedical interventions. How many parents with a severely ASD child with gut disease does CHB have on its board? How many parents of ASD kids who had experienced adverse reactions to multiple vaccines and then regressed into autism are on the board? Has CHB spent time with the national autism community, attending family conferences, learning about the complex medical needs of so many kids?
Have any members of the CHB attended a DAN! Conference this year? Or Autism One?
These conferences are organized and attended by families, researchers and physicians. They present an excellent opportunity to network, get acquainted with the most current causation, environmental and treatment research and possibly serve autistic children more effectively. What is the downside? Autism Speaks recently held an excellent seminar for pediatric GIs regarding treating kids in the spectrum. Did anyone from CHB attend? CHB needs to make researching and treating our kids’ autism and their co-morbid issues as important as tuberous sclerosis. I know, I know, researchers argue that by studying these rare diseases, they will learn more about the autism’s pathways. I’m sorry but the majority of ASD families do not agree. The overlap between these extremely rare chromosomal disorders and autism is slim. It would be more productive to study children with traumatic brain injuries. Now that is a population that has much in common with autism.
After my piece was in AoA I heard from so many Boston area Moms and Dads who called CHB seeking help for their ASD child’s GI problems. Over and over again they waited months for an appointment and were told that outside of diagnostics no treatment or medical services were available.
A Mom wrote to me, “I took my son to CHB because they were supposed to be great…we waited 10 months for an appointment only to leave there devastated.”
Another area Dad of a sick kid with autism wrote: “ we don’t take our son to CHB anymore…for inflammatory bowel disease, autoimmunity problems, serious food allergies…because the facility offers nothing to us but genetic tests.”
Another are Dad described CHB’s “doctrine” as “obsolete.” His family left CHB feeling like they were on their own.
A parent of a 13 yr old with autism wrote me that looking at CHB’s website was a flashback to the autism science a decade ago when her son was diagnosed there.
Certainly CHB can do better than this. Certainly Dr. Hanson and the rest of CHB want to do better than this.
Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.