How We Talk About People With Autism is All Wrong

Correct information about Autism is Lacking

Uncritical over reliance on US Centers for Disease Control and Prevention (CDC) autism numbers has created a string of misguided awareness campaigns. Lack of clarity and ongoing failures to meet the needs of autistic people and their families persist. This superficial understanding of autism leaves the needs of autistic people, in some cases their existence, unrecognized and unaddressed.

The CDC is clear about the limitations of estimates from their eleven monitoring sites across the country. As a result, reathless claims about epidemics prevail. Positioning rates of autism as something fearful makes it seem as if being autistic is the worst thing that could happen.

Autism remains relatively ‘unknown,’ as a result enough isn’t being done

The lack of clarity surrounding the true number of autistic people prevents an adequate accounting of their needs. I’ve been hunting for statistics on the numbers of people with autism living and receiving services in New York State. No one seems to know where or how to obtain those numbers. Not even those entities tasked with providing services. The reality is those providing services are not asking us what we need or how the existing systems are affecting us. Policy makers and certain advocates fret about the costs associated with the lives of autistic people. Although they lack definitive numbers on people with autism and how to adequately address their needs.

Reducing the lives of autistic people to dubious estimates of the costs of caring for autistic children leaves unaddressed the fact that autistic children grow up to be autistic adults. If there’s no accurate measure of the number of autistic people, how accurate can any costs associated with them be?

Governments are failing people with Autism and their families

Only an estimated 35% of U.S high school graduates with autism get to go to college. Additionally, Autistic adults with college degrees have an estimated 80% to 85% unemployment rate in the U.S. This is far above the rate of any other demographic in the country. Access to opportunities and the possibility of economic freedom for Autistic people is practically non existent

Recent additions to the numbers game include estimates of the “burden” of special education costs on school district budgets across the United States.  At the same time, there have been cases where schools districts were exposed for not providing students with appropriate services.  Families who fight for the accommodations required by law struggle to find sympathy for the budgetary burdens of school districts. Especially when our loved ones are not getting the care and services they deserve.

In New York state the 2017 graduation rate for students with disabilities, which includes autistic students, was 54%. The “burden” of special education costs pales in comparison to the lack of an adequate education for a student. Discussions about the burden of the costs of special education are lost on families who must fight for resources. Imagine if educating students with disabilities wasn’t framed as a burden on school districts?

Stereotypes about who has Autism further ignore underserved communities

Children from groups classified as minorities in the US consistently have lower rates of diagnosis, high rates of late diagnosis, poor service access, and poor outcomes. 

Even though autism occurs at similar rates in every ethnic and racial group worldwide.  Socioeconomic status remains the single greatest influence on outcomes for an autistic person.

Families and providers fail to see Autism is possible for all people, not just affluent white males. 

Schools are under resourced and over stressed

In distressed rural and urban school districts families with the social capital to advocate for their children get the limited resources available. A surprising special education trend in my region is parent reports of the reluctance of wealthier school districts to provide legally mandated support services to students with disabilities. Framing educating students with disabilities as a burden, rather than an integral part of the education process, has dire immediate and long-term effects for autistic people. Particularly those of lower socioeconomic classes.

Mental Health and Autism

Given the stresses that autistic people and their families face navigating systems of care it shouldn’t be surprising that autistic people have increased risks of developing mental illnesses. In fact, Autistic youth are at increased risk of suicidal ideation as well as other mental health challenges. These issues persist into adulthood.

Neither should it be a surprise that autistic people have high rates of poor mental health outcomes. The dual stigma of autism and mental illness confounds addressing these needs in a manner that works for autistic people. The social and political will to adequately address the mental health needs of autistic people is virtually non existent. National mental health advocacy and national autism advocacy organizations have yet to address this area of need.

We Need To Do Better For People with Autism

Autism by the usual numbers doesn’t come close to elucidating autistic experience. Despite the decades of research supporting the diversity of autistic expression and experience, the need for social and economic supports for families and individuals, and the risks to the mental health of autistic people and their families, the systems of care to address the needs of autistic people remain unresponsive. This must change before another generation of autistic people is cut off from the full experience of their personhood. The CDC and large autism awareness organizations have a responsibility to include and accurately represent the experiences of diverse families as well as the realities of life on the autism spectrum.

Samantha Pierce is an education and autism advocate, writer, wife, mother, and friend. I meet people where they are and connect them to possibilities and opportunities. I’m the quirky black girl who read all the books, took apart the electronics, messed with live wires and lived to tell the tale. I’m the founder and CEO of NeuroDiversity Consulting as well as founder and president of the nonprofit Sanchia A Callender, Inc.