NAA Board Member, Claire Bothwell serves as a Consumer Reviewer for the Department of Defense Congressionally Directed Medical Research Programs (CDMRP) Autism Research Panel. We’re proud to share with you this blog she wrote regarding her experience as a research reviewer for this important federal program.
No one believes in your child the way you do
By Claire Bothwell
The role that is the source of my greatest pleasures and concerns is that of Mother: Mother to three wonderful people – 23-year-old Will, 21-year-old Katrina, and 19-year-old Jillian. The reason I have participated, several times, in the Department of Defense Congressionally Directed Medical Research Programs (CDMRP) Autism Research Panel as a consumer reviewer is because of my son, Will, who has autism.
Our concerns for Will began when he was around two. It took us a while to realize there was a real “difference” between him and other 2-year-olds, but even longer to get assessed. By then, life had become pretty difficult with this beautiful little boy. My son was always at the center of some row and would either ignore or push away the other toddlers. He couldn’t share or tolerate sitting down for “circle time.” He threw terrible violent tantrums at the slightest thing and would be really difficult to calm down. I stopped going out in public with him unless it was absolutely necessary. I was about to deliver our second baby and I just didn’t have the strength to deal with Will outside of the house.
Although he said his first word at 10 months and gradually developed a considerable vocabulary, somewhere along the line he stopped developing any new language and he didn’t use the language he had to interact with people. He never pointed. Eye contact had also disappeared. The baby that used to smile straight at us was gone, and the little boy left behind observed things in furtive glances through his peripheral vision or stared blankly into space. He had dreadful gross motor skills and was constantly falling down.
Will was 34 months old when he was diagnosed. I was surprised at how very little was out there for my family in the way of resources. There were a few books and a few parent support groups, but not nearly the amount of information and support that can be found for other diseases and conditions affecting children and their families when facing a new diagnosis. I joined support groups that I could, but I was quickly frustrated by the static nature of these organizations and what I perceived as their inertia when it came to finding current research and treatments that might make a difference for my son. I contacted the local regional center and school district and was dismayed to find they were only interested in offering the most basic of services: something offered to every single child with autism and not designed to address Will’s, or others’, individual needs. They didn’t see him as a child with promise, who could learn and improve, only one drop in a rapidly increasing pool of children draining the school’s budget seeking special education services. This is when I learned my biggest lesson about advocacy: No one believes in your child the way you do.
I realized I needed more knowledge and power to advocate for my son. Through my advocacy research, I participated in meetings, influenced decisions made at school districts and regional centers, and quickly provided parents with information about the latest research and teaching programs for their children. Within the local Autism Society of America chapter, another mother and I founded a separate support group specifically designed for the Newly Diagnosed Parent. We amassed as much information and resources as we could and developed reference binders to address all the concerns and issues for newly diagnosed families. We held support group meetings and assigned around-the-clock mentors to be available for phone conversations. We sought to empower other parents to successfully advocate for their children. We continued that support group until 2007 while I also became affiliated with FEAT (Families for Effective Autism Treatment) and was one of the founding members of LA FEAT (Los Angeles Families for Effective Autism Treatment).
By the year 2000, I was traveling more to attend government hearings, conferences, and meetings addressing many different autism topics and I became involved with the founders of Moms on a Mission for Autism (MOMA). I met other parents from all over the United States who had experiences and concerns similar to mine. Together we networked to have our voices heard on a national level. We sought out lawmakers and policymakers and took our children’s issues to State and National government offices to meet with our elected representatives about the plight of our children, hoping to convince them to address the rising epidemic and help us make changes that would positively affect the future outcome of children with autism. MOMA became the National Autism Association (NAA) and, after being involved as a general member, I was invited to join the Board. I served as Board Chair during 2007-2008 and continue to be an active Board member. NAA is the leading autism membership organization for breaking through the myths of autism as a mysterious and incurable disorder. Recognizing that the future of those with an autism diagnosis cannot rely on raising awareness alone, we are committed to empowering parents and caregivers with the most up-to-date resources available to enable all affected individuals to reach their full potential.
It was through my service on the NAA Board that I learned about the CDMRP Autism Research Program in 2008. In 2010, I was nominated by NAA to serve on a panel as a consumer reviewer. I had never served on a peer review group before, but I was very interested in being part of the process. I was keen to represent the autism community in discussions about the sort of research that our community needed to be funded and was very excited that consumers were consulted on what research would be important to fund for individuals with autism. I was hopeful that we might help shift the prevailing trend of “nice to know” research towards “need to know” research.
I have been impressed with the broad range of research proposals submitted to the CDMRP, as well as the thoughtful and careful review and discussion by the scientific reviewers on the panel. As a consumer reviewer, I have been able to bring the perspective of the community to those peer reviews and to discuss the relevance and potential impact of each proposal to our community’s concerns and needs. I am extremely grateful to the scientific reviewers and their commitment and dedication to improving the lives and possible outcome for individuals with autism, and I applaud the Department of Defense CDMRP for developing this program for Autism Spectrum Disorders (ASD) and committing the funds to move necessary research proposals forward. It is important to acknowledge the many challenges facing individuals with autism and their families, and also the scientists, therapists, clinicians, psychologists, teachers, and technicians working so hard behind the scenes so that research into this devastating disorder can not only continue, but increase as well.
I’m very encouraged to see more research proposals focusing on the effect of environmental triggers or events on pre-existing genetic conditions. I would love to see more research focusing on the growing adult population that will be increasing exponentially as the boom of ASD children diagnosed in the 1990’s and beyond age out of school and special education – such as Will, who is continuing to blossom. He has learned to drive and would like to eventually transfer to Cal State Long Beach and work on a Bachelor’s degree in Statistics. He has volunteered at local summer camps for children with disabilities and he works particularly well with young children. He is kind and, contrary to what “experts” predicted, very empathetic. He is extremely literal and can be pedantic and obtuse. And he is very much loved.