The Role of Parents in Autism Research

My daughter has autism. She was diagnosed at the age of 2 and she is now 10. Over the years, I have learned a lot about many aspects of autism. I have learned so much over the past 8 years that as I type this, I realize how many steps have gone into the process of helping her. My daughter is blessed to have improved a great deal. She is in a regular grade 4 classroom. She has an aide, but the aide is not always in the classroom and basically is used only when needed. My daughter also receives speech services to help her with conversational and social skills. At home, we are working on programs that focus on perspective taking and the back and forth flow of communication. My daughter is currently in an RDI program, from which she has benefited enormously. Yes, there is still work to be done, but I am truly grateful for her improvement. I cannot put into words how truly thankful I am. As the mom of a special needs child, I have gone through so many emotions dealing with handling this type of situation. I have pushed for answers and I have not been afraid or embarrassed to advocate for her. I have come to know, and become friends with, other parents who have enormous determination to help their children. The following article, posted at TVOparents.com, outlines the role of parents in autism research. I hope you will find it informative and, even more so, motivational and inspirational.

The Role of Parents in Autism Research – An Historical Perspective

This study reviewed the role of parents and advocates in autism research and treatment over the last 50 years. Specifically, this study examined scientific publications and archival sources to document how parents and advocates organized research funding, constructed clinical research networks, suggested new avenues for research, popularized empirically based therapies and anticipated paradigmatic shifts in the understanding of autism.

In general, parents of children with autism are very well informed and actively involved in the diagnosis and treatment of their children. Pediatricians have often felt bewildered or angry when parents challenge not only their authority but the entire scientific process.

Though this often happens with childhood disorders, autism has become one of the most controversial and thus salient examples.

Learning from Parents
Parents have been essential to advancing research. They often provide meticulous notes which have been used as primary sources for research. In fact, parents often diagnosed their children themselves when professionals were unfamiliar with the disorder. When professionals were thinking that autism in children was caused by “refrigerator parents”, it was a parent who noted that the atypical social tendencies and intellectualism of parents of autistic children might be evidence of mild autistic tendencies in parents – what researchers now refer to as the broader autism phenotype. Other parents helped professionals understand that autism was a developmental disorder and the tomes of evidence presented by parents groups helped the US Office of Special Education change the description of autism from a severe emotional disorder to a developmental one.

It was parents who reported a regressive form of autism where children acquired words, maintained eye contact and demonstrated joint attention before losing these abilities – and only recently have researchers been studying this regressive form of autism.

Because researchers were not sharing genetic samples and a large number of genetic samples are necessary to show that autism was a complex and heterogeneous genetic disorder, parents contacted other parents and enrolled them in a new gene bank and made the publication and sharing of data conditions of use. Now, all qualified investigators are granted access to the gene bank for research.

Parents have also pushed for increased federal funding and legislation for autism research. The Combating Autism Act was signed into law after lobbying by parent groups.

Parent groups also maintain grant review policies, scientific review committees and make use of scientific degree-holing parents with autistic children. Parents groups increasingly set goals and distribute funds.

Parents as Proponents of Interventions
Applied behaviour analysis or the Lovaas technique was widely used mainly because of the activism of parents. The authors of almost all behavioural programs for autistic children emphasize the central role of parental participation.

Some parent groups have pursued medical treatment and some have pursued alternative treatments in the absence of simple medical interventions. For example, many parent groups believe that children with autism will responds to an individualized regimen of elimination diets, nutritional supplements, and detox therapies.

Anecdotal evidence passed from parent to parent is powerful evidence for families considering new therapies, especially when the risk is small.

Parents have voiced concerns about the relative importance of symptoms and what are seen as co-morbid conditions; it was parents who argued that there are children with autism who are in distinct subsets of children with autism. For instance parents noticed a subset of autistic children with a history of regression and gastrointestinal problems.

Parents concerned about the relationship between vaccines and the preservative thimerosal and increasing autism rates caused physicians to delay vaccination until thimerosal was removed. Although empirical evidence didn’t support the thimerosal-autism link, there has been some research to suggest the preservative may affect immune response. Concerned parents have formed advocacy groups devoted to the autism-mercury hypothesis.

Antagonism, Partnership or Collaboration?
Over the last 20 years, advocacy groups have developed relationships with researchers and medical practitioners. The availability of information on the web combined with an increased skepticism toward medical authority has resulted in advocacy groups that are highly interested in taking part in research and offering ideas about the disorder and the way research should be carried out. They have also acquired a historical perspective since parents with autistic children are aware of the history of psychogenic theories and are concerned about the ability of pediatricians and developmental specialists to dismiss parental claims in favour of an interpreation based on prevailing theories.

Parents are going beyond supporting research through funding to questioning the way that climincal trials are designed. These social advocacy groups pressure legislators, couts and medical researchers because researches depend on patient populations for access to research subjects and materials.

Parents give understandings of disorders that are difficult to get in a clinical study: they interact daily with the illness, they witness its alterations over time and can report on the efficacy of daily treatments.

CONCLUSIONS
It is unlikely that autism with respond to a single intervention, thus both doctors and parents will have to work together to see partial and incremental improvements.
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In Canada, one agency that helps children, their parents, and other family members, is the Autism Society of Canada.