July 30, 2014
Autism at a Crossroads – Part II
BY Mary Mahoney
This is the second installment of a three-part series entitled Autism at a Crossroads. In Part III, we will review autism research news, review therapies and discuss the challenges of autism at school.
In part I of Autism at a Crossroads, we talked about the alarming increase in the number of children diagnosed with autism spectrum disorder, which the Centers for Disease and Prevention, the CDC, says went from 1 in 150 in the year 2000 to 1 in 68 in 2010. Additionally, the autism diagnosis has been retooled in the latest diagnostic manual, the DSM-V, and we discussed options for covering autism-related medical expenses.
The CDC describes autism as “a group of developmental disabilities that can cause significant social, communication and behavioral challenges.” Those with autism may also have low IQ’s, fine and gross motor problems and a host of other complications.
Since there has been such a rapid rise in new cases and much debate over the nature, treatment and causes of ASD, it has been a challenge for families with ASD to navigate their way to a successful plan of action.
For one, autism has to be identified. Sound simple? This is actually one of the biggest hurdles. ASD typically manifests itself in childhood. But because symptoms are so diverse and because not all children develop at the same rate, many parents overlook the signs.
“Despite our being able to reliably diagnose autism as early as 24 months, many children are still going undiagnosed until grade school,” said Amy Daniels, assistant director of public health research for the advocacy organization Autism Speaks, citing its research review. “By recognizing and addressing the factors that delay diagnosis, we ensure that many more children get the quality early intervention that we know can transform lives.”
The Autism Speaks blog notes several studies have shown children with other medical and psychological conditions tend to be diagnosed later than average. “Such conditions included hearing impairment and attention deficit disorder,” the blog said. “Similarly, two studies associated delayed diagnosis with parents mistaking autism symptoms for other behavioral problems such as being ‘stubborn’ or ‘spoiled.’”
Many families turn to Birth to Three to obtain evaluations, assessments and therapy at little or no cost. Sometimes known as early intervention, Birth to Three is a program under the Individuals with Disabilities Education Act – IDEA 2004 – Part C. The IDEA site describes Birth to Three as a federal grant program “that assists states in operating a comprehensive statewide program of early intervention services for infants and toddlers with disabilities, ages birth through age 2 years, and their families.”
Birth to Three is not the only way the government has helped defray the cost of caring for those with autism, but the goal of curing autism remains stubbornly elusive.
The United States spent almost $2 billion on autism in the last decade. The Interagency Autism Coordinating Committee, or IACC, was formed in 2006 under the U.S. Department of Health and Human Services to support the Combat Autism Act law, or CAA. The IACC’s job is to monitor and create a strategic plan to understand and treat autism.
But according to a USA Today article two years ago, more than $1 billion has been spent over the past decade searching for the causes of autism. “In some ways, the research looks like a long-running fishing expedition, with a focus on everything from genetics to the age of the father, the weight of the mother, and how close a child lives to a freeway,” the article said.
Later this year, a new bill will be put forth to reauthorize the Combat Autism Act (CAA), and increase the budget. But how to best spend the money for something we know so little about?
Florida representative Bill Posey had quite bit to say about that in a blog in The Hill: “At a recently called House Oversight Subcommittee meeting, Dr. Insel, Director of the National Institutes of Mental Health and the National Institutes of Health, admitted that after eight years and spending $1.7 billion, the programs developed in the CAA have failed to determine the causes of the enormous increase of the prevalence of autism, failed to prevent a single case of autism, failed to produce any new biomedical treatment for autism, failed to materially reduce the age of diagnosis of autism, failed to ensure appropriate medical care for the co-occurring health problems faced by many with autism, failed to ensure even basic safety protocols for people with autism who “wander,” unfortunately some to their deaths, and overall, failed the families facing autism – most especially the approximately one-third of families with children most severely affected by autism, who literally cannot speak for themselves, and whose severe disabilities portend one of the largest unfunded federal fiscal liabilities of the 21st century.”
To underscore the point, we are not even sure how to approach autism. Advocates have lobbied successfully to change the reauthorized law’s name from the Combat Autism Act to Autism CARES – Autism Collaboration, Accountability, Research, Education, and Support Act of 2014.
What this suggests is that among all the uncertainty and debate, some people are just trying to figure out how to live with autism, learn out more about it and get the right support. And this is very much a work in progress.