The scientist in me appreciates the enormous amount of research funding that is going into autism research. Many extremely talented individuals are conducting cutting edge research into the causes and potential treatments for autism. Huge genetic studies, experimental brain imaging, the use of new medications aimed at making children more social, more engaging, and less autistic, are among the myriad of research projects that are being undertaken. The science behind the human brain, both in health and in illness, is a key reason why I trained as a psychiatrist. I hope the scientific study of autism will allow for amazing insights and beneficial discoveries in the coming years or decades.
What do we do right now?
At the same time, there are people with autism who would benefit from help today. Expecting them to wait months for an appointment is difficult enough, let alone years for the next possible breakthrough. The interventions that are genuinely helping people with autism and their families today are far simpler and have attracted much less research attention. Ask me how we can improve the lives of people with autism, and I am less likely to identify a type of brain receptor, and much more likely to talk about social skills training, engaging with the school or work place, and making sure that families are being supported at home. These topics are much less likely to be the subjects of academic research and funding, and furthermore, these "softer" interventions are not even that readily accessible to families.
The Autism "Gap"
Most of these interventions fall into what I call the autism "gap," a chasm of care and services that lies between families, health care, education, and social services. What we need is a coordinated approach, because without it people with autism will continue to remain disadvantaged in medical, educational, and vocational settings. Let us also not forget about the families of people with autism. Families that face many challenges in pursuing care, leading to immense stress in family and spousal relationships.
I have also heard about the importance of telling parents to "advocate" for their children. Then one day, my wife asked me what exactly that meant. After about a minute of a bumbling response, I realized the truth. It meant asking the parents to find a solution to the autism "gap," a seemingly insurmountable challenge. "Advocating" for their children was an easy way of saying that the autism "gap" is for parents to figure out, and no one else was willing to help them address it.
The autism "gap" is by no means uniform. It varies immensely from person to person, school to school, and state to state. The needs of each individual with autism is unique, and even more difficult to address given the zip code lottery of services that families have to contend with. While gaining autism services is difficult for any family, those from minority backgrounds, limited English fluency, or the economically disadvantaged, face even greater hurdles.
For Adults the "Gap" is More Like the Grand Canyon
As the many children with autism grow older, and more individuals are diagnosed with autism in their teens and adulthood, we find ourselves in a system that is even more ill-equipped to cope. This is where the autism "gap" begins to look more like the Grand Canyon. Which group of medical specialists look after adults with autism? How many employers actually have accessible vocational plans for adults with autism? Where are the social skills or sporting clubs where adults with autism further develop skills and stay engaged in exercise? I cannot count the number of conversations that I have had with parents, who are often emotional, when their express their fear of what the future holds for their child when they themselves become infirm or are no longer alive.
The autism "gap" can also apply to children without the diagnosis of autism. What do we do when a child would likely benefit from specialized services but lacks a diagnosis? As a physician psychiatrist, I know that my diagnosis of autism carries with it substantial implications for both the child and their family, who have often waited months to be seen in the clinic. We really need to be in a position where we can rapidly assess children in primary care, giving a preliminary diagnostic opinion so that the process for obtaining additional support and services can be started earlier. I would also welcome a case coordinator or "autism navigator" to guide families as to where and how to gain the services their child needs.
From Autism "Gap" to a National Autism Strategy?
How do we address the autism "gap" -- is it time for a National Autism Strategy? Before I trained as a psychiatrist, I had trained as a family physician in England. What I learnt is that close coordination with social services, schools, and the community is essential in delivering care to the most vulnerable members of our community. England actually passed an Autism Act law in 2009, and followed up with a strategy for adults with autism in 2010. What it means is that there are clear pathways for diagnosing autism, there are regionally appointed individuals who oversee the autism policy, specialist autism training is provided for primary care clinicians and social service staff, and services must be made available based on the needs of the population being served. While the success of the act and the strategy is debated by some, the fact that it is in print, and part of the law is a step in the right direction. I hope we can learn from the lessons in England and develop our own national strategy. The longer we wait the bigger the challenges are going to be.