Autism therapies and politics

Just as the State government in Michigan is considering increasing funding for therapies targeted to help children with autism, a new study reports that the number of children receiving the diagnosis is rising quickly. Between  2006 and 2008, a 20 percent increase in the number of children labeled as having this chronic condition was seen. It is unclear if this increase represents a true rise in the number of children with the disorder or if it represents a shift in labeling otherwise quirky children as being on the autistic spectrum. Either way, the increase is striking and worthy of discussion.

Another study recently published revealed that the developmental trajectories for children with autistic spectrum disorders varied widely and that about 10% of children with severe impairment at the time of diagnosis underwent rapid developmental improvement and ultimately were high functioning. This small subset of children, labeled “bloomers” by the researchers came from higher socioeconomic classes and were not cognitively impaired. The study identified six developmental pathways for children on the spectrum and found that children with milder impairments at the time of diagnosis and children of higher socioeconomic status fared better than others. Although specific interventions were not examined in the study, it would appear that the children most apt to improve (including the subset of ‘bloomers’ who started off more severely affected) were likely to have access to better resources, community and neighborhood support, educated parents who could advocate for them to receive therapy and support, and were more likely to have an otherwise enriched home environment.

I have mixed feelings about the legislative push to fund autism therapies. I feel that although autism is often a severe, debilitating disorder, other issues, such as educational disparities among rich and poor and physical and mental health issues are also woefully underfunded and to single out one disorder to fund better will undoubtedly leave others even less able to meet the minimum needs. With the rise in autism diagnoses and the apparent association between socioeconomic class and outcome (which I equate as access to services and advocates), if the state funding is approved, I hope minority and poorer children with autism spectrum disorders see improved outcomes as well. My cynical fear though is that the main reason this legislation has come as far as it has is that well off families with children on the autism spectrum are frustrated with the lack of insurance coverage and expense of therapies. These upper middle class families can already advocate for their children and adapt their work schedules to maximize the chance that their child will have a better outcome. I know these families will maximize any state funding options that are there.

Children from poorer families are less able to access even the basic services of routine care let alone specialized services like speech therapy, intensive behavioral therapy, and occupational therapy. Theses specialized services take place during the regular work day, often far from a family’s home and require a parent to be present both to bring the child and to be taught strategies to implement at home. Families with meager means already face challenges of reliable transportation, the struggle of not being able to take a lot of time off work, and the day to day challenges of parenting a child on the autistic spectrum. These families need the greatest support based on the research to equalize the likelihood of better outcomes and yet funding the therapies is only a small (albeit important) piece of the puzzle. Let’s hope the poorer kids who are at greatest risk for worse long term outcome will be able to access them too.

Autism and the related conditions on the autistic spectrum are challenging for families and society as a whole. Improved long term outcome reap benefits for everyone so that these children can grow into independent adults, contributing to society. Unfortunately though, autism is not the most common barrier to functional success in life. The burden of undereducated poor children is a much greater disruptor in society. Even with 1 in 88 children identified as being on the autistic spectrum, the resources that would be shifted to ensure these children have therapies funded will take money away from something else.

Autism garners attention and support in part because it has been championed by the media with savvy celebrities, divisive debates about it’s cause, but mostly because it affects rich and poor alike and rich folks have a way to trumpeting their concerns. Poor kids have no one to advocate on their behalf, no one to get enraged at the loss of gifted minds and talented children because the education system can’t meet their needs, no one to champion the system-wide change that would need to take place to have each poor child seen as a potential innovator or artist or engineer instead of settling for at best a system that prepares them for mediocrity. If weathier parents felt their children’s potentials were not being maximized you’d hear about it, and the autism legislation is one example of that. Lets hope the poor kids get some of this attention and support as well.

If the legislation passes and financial support for autism treatment is improved, let’s take this example of success and apply the same tactics to ensure mental health issues, education disparities, and access to basic health care for everyone get similar attention.