Assignment 16 - Delaney Staley - Speech

In an article published in The Atlantic, it details a family’s story of struggling to find support for their 21 year old son with autism, Andrew. The family had been able to rely on government funded support for the entirety of his life, enrolling him in some of the best programs to aid him. However, after high school, in most cases, this support ends. The Individuals with Disabilities Act (IDEA), most recently revised in 2004, mandates that the state “...makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children.” This encompasses various disabilities, including autism. The law defines autism as “...a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child’s educational performance.” In Andrew’s case, he was diagnosed at 2 and a half years old. He is unable to speak and his parents are aware that he will need assistance for the remainder of his life. Due to the increasing awareness of autism and the overwhelming research, the number of children diagnosed with autism has gone from 1 in every 150 in the year 2000 to 1 in every 59 children in 2014, according to the CDC. 

According to the National Autism Indicators Report, almost half a million youth diagnosed with autism will become adults over the next decade. Once past age 21, the Individuals with Disabilities Education Act states that young adults with autism are no longer entitled to the services provided and mandated under the law. This is known as the services cliff -- which many youth experience after high school, when they lose access to the services they had through special education provided for them by the government. This leaves the individual and their families, in most cases, to fend for themselves and delve through the other government services provided for those with disabilities including autism. These services include Medicaid, Supplemental Security Income, and various state disability agencies. The complicated process that one must endure simply to apply for these services and the strict criteria often leave families still struggling to make ends meet. According to the 2015 National Autism Indicators Support, while half of families reported needing some or a great deal of effort to find and access services when the youth was 17 years old, after high school this number jumped to more than 70%. Furthermore, During high school, 97% of youth received at least one of these services, including speech-language therapy, personal assistant services, social work, case management, transportation and occupational therapy. In their transition from adolescence to adulthood, approximately 26% of young adults on the autism spectrum received no services. In a study of 242 teens, researchers found that young people’s autism symptoms and behaviors often improved during adolescence but after they exited high school, progress slowed and in some cases, stopped. This could be attributed to the lack of services provided to those young adults with autism as many cannot afford the same degree of support they were receiving before and this makes it even harder to be able to secure and maintain a job.

In a report to Congress regarding Young Adults and Transitioning Youth with Autism Spectrum Disorder, it was found that only 2 percent of research funding on ASD has been dedicated to the needs of adults living with ASD and less than 2 percent has been pledged to transition-related issues. Leann Smith, a developmental psychologist says “When you look at early intervention for autism, there are lots of different models, and we have a pretty good sense of evidence-based practices for young children with autism, there isn’t anything analogous to that for adults.” Though those living with autism spend a greater majority of their life as adults, still the research into how to better serve this population is meager and insufficient. As more and more adolescents transition into young adults, this lack of research into how to improve the lives of those adults with autism will continue to fuel the unavailability of good and modestly-priced programs to serve those adults.

In order for our society to improve as a whole, we need to start making more services available to adults diagnosed with autism by lowering qualifications to make them more accessible. Further, we need to simplify the process through which families are to apply for aid for developmental disabilities such as autism, such as to facilitate a faster means of delivering that aid and eliminating the wait. Lastly, we need to dedicate a larger amount of money towards researching the efficacy of already-existing programs intended to help adults with autism and towards developing new ones. Once these changes have been made, adults with autism will be able to have a stable place in our society.