In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.
Fifty years ago, when I was an 8-year old child, autism was believed to be uncommon, with only 1 child in every 2 or 3 thousand receiving such a diagnosis. It was probably the last thing a teacher or parent thought of when they observed what they may have thought was a socially awkward child trying to navigate the complex hierarchies of the classroom and playground.
Today, with improved national awareness and greater ability to identify and diagnose children with what is now called Autism Spectrum Disorder (ASD), we know far more about how ASD manifests itself and how common this condition is. ASD involves impairment in social interactions and restricted or repetitive behaviors and interests. Its manifestations can range widely from mild to very extensive. Only about one-third of children with ASD have an intellectual disability. About one-quarter fall into the below-average range, while nearly one-half are average or above average intellectual ability. Unfortunately, this means that many children with ASD may not qualify for special education services because they are within the typical range academically or because they do not present with any specific behavioral problems.
In 2000, about 1 in 150 children was identified as having ASD at the age of 8 years; by 2012 (the most current estimate), this had risen to 1 in 68, in large part due to improved diagnostic tools and awareness by health and education professionals. It is not surprising that we are now experiencing a surge of young people with ASD transitioning to adulthood. Based on U.S. Census data and ASD prevalence estimates, over a half million youth with ASD will turn 18 over the next decade. Unfortunately, they are entering a health and social service system that is largely unprepared for them, one that often lacks many of the resources that youth with ASD need for a successful transition to adulthood.
New and expanded models of service and health care delivery are needed that ensure coordinated and comprehensive care across what have traditionally been different service systems. For children, the educational system provides most supports for those with ASD, but for adults, the health and social services available are more complex and not often specific to the needs of persons living with ASD.
It is vital that supports and services be comprehensive, coordinated and individualized to each person’s needs. For example, in addition to medical care, one young adult with ASD may need vocational rehabilitation services and assistance with independent living, whereas another may particularly need behavioral health care and social skills supports for the workplace.
An important consideration for the transition period is anticipating individual health care needs. Recent research has revealed relatively poor health outcomes over the lifespan among adults with ASD, finding that when compared with the general population, those with ASD:
The need for improved individualized planning, access to support services, and specialized health care through the transition period to adulthood and beyond is vital for improving the health outcomes and community integration for youth with ASD.
- Die an average of 16 years earlier;
- Are 40 times more likely to die prematurely of a neurological condition (such as epilepsy) if they also have an intellectual disability;
- Are nine times more likely to die from suicide;
- Are at heightened risk for conditions such as depression and anxiety; and
- Are at higher risk for other non-communicable diseases, including type 2 diabetes and heart disease.
Currently, only about 1 percent of autism research, both private and publicly funded, is devoted to ASD in adulthood, including the transition to adulthood. More research on transition issues, as well as development and evaluation of models of appropriate care and service delivery, are an urgent public health need, as a half million youth with ASD will become adults over the next decade.
To learn more about Autism Spectrum Disorder visit HHS.gov/autism.