Is Autism Awareness Leaving Anyone Behind?
As the old saying goes, it takes a whole village to raise one child. And parents and caregivers of children with ASD know that they often have to rely on an even larger village. But what happens when those children become adults? What village is there to care for them and lift them up?
When individuals with ASD are in school, they receive consistent, federally mandated assistance and access to a variety of special education or early intervention programs. As required by the Individuals with Disabilities Education Act (IDEA), public schools have to provide educational services and support for ASD students, and students with other special needs /disabilities, until they turn 21 or 22, depending on the state. After that, those individuals and their families lose access to much of the funding and support they relied on. This phenomenon is most often referred to as “aging out,” in reference to the aforementioned age cutoff. The majority of that remaining financial burden then has to be carried by families themselves, and many families struggle.
Kristina Chew, a Rutgers Classics professor whose 18-year-old son Charlie has ASD, is one of many parents of autistic young adults advocating that public schools should continue to educate developmentally delayed or ASD students until they turn 25. Other families turn to day habilitation or dayhab programs. Meanwhile, some families turn to residential facilities, but since a great many of these communal living centers have historically not operated in the past with tenants’ best interests in mind, they aren’t always the most popular. Additionally, while there are plenty of after school or weekend programs for school-aged individuals with ASD, very few of those programs cater to the needs of young adults with autism, and even fewer centers have affordable programs exclusively for young adults. Accessing resources for autistic or developmentally delayed individuals who are well into adulthood can be even more challenging.
Thanks in part to severe Medicaid cuts in recent years, the number of programs for young adults with ASD is shrinking, while the number of ASD diagnoses is increasing. ASD is the most common developmental disorder in the US (in 2018, the CDC found that 1 in 59 American children have some form of ASD). As a result, over the next decade, approximately 500,000 young adults with ASD will age out of the education system, according to the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network.
Many autism awareness advocates argue that there needs to be a shift in regards to funding. Vox writer Dylan Matthews who has ASD himself, has reported on how funding trends lean towards researching the condition’s biology and neurology, instead of focusing on researching more “immediate, tangible benefits to people on the autism spectrum.” The Interagency Autism Coordinating Committee (IACC), a branch of federal Health and Human Services found that just 1 percent of their overall funding between 2011-2012 was devoted to researching the needs of autistic adults. During that same year, a mere 10 percent of IACC’s treatment related funding went to “evaluating the effectiveness of community-based services in assisting autistic people.” The Autism Self Advocacy Network, a premiere autism rights organization, found that out of all the National Institutes of Health’s 2012 ASD funding, "services-research was 1.82% of the NIH investment while research on adults reached a historic low of 0.9% – less than one percent." Ari Ne'eman, The Autism Self Advocacy Network’s president responded to the statistics by saying they “show a shocking lack of interest in aligning scientific investment in autism research to the priorities of the most important stakeholders: autistic people ourselves."
For writer-blogger, and ASD awareness advocate Susan Senator, whose 30 year-old son, Nat, has ASD, adequate dayhab programs are difficult to find, not just because there are too few of them, but also because so many of those programs themselves are lacking. In speaking to The Child Mind Institute, she described how most dayhab programs are like "babysitting, [with] table top activities, coloring, television or sheltered workshops, with very little out in the community…" Observations such as these prompted SNACK to expand its services to create our latest initiative, SNACK 21+, in 2016. SNACK 21+ is devoted to working with ASD (and other developmental delayed) young adults to help them achieve their maximum potential by supporting a successful transition to adulthood. Our one on one staff member to student ratio allows us to provide alternative activities each day, which enhances skills needed for independence, community participation and a sense of purpose to our students everyday lives. We work with our SNACK21+ students in a variety of different areas, including job development, community participation and technology training, to best equip them with the structure and resources they need to live as independently as possible.
Because of their generalized lack of federal funding, the importance of services across the country for adults with ASD aren’t recognized as much as they should be. And that has to change. If it doesn’t, we can not only not support the autistic adults of today, but we also won’t be able to support children with autism—the adults with autism of tomorrow.