Care for the Older Autistic Child

Autism Awareness Ribbon

This morning, while I waited for my daily spin/torture class at the gym, a classmate” approached me. After speaking with me for a few moments, she disclosed a bit of information including the fact that she has a 17-year-old special needs child. As most people in my situation might have done, I relayed my sympathy for the challenges that she is encountering.

My friend conveyed that she has some concerns about the care that he will receive after turning 18. According to the State and to her insurance carriers, once he turns 18, he is considered an adult and not able to get access to the same level of services he had while in school including 24 hour a day residential care. My friend noted that there is one space available in another community around the same time that her son turns 18 but that there was no guarantee that he will get the spot and there is no way to know how well he will adjust to a new living situation. She is worried for her son and for his future.

I left the conversation with questions about what care is actually available once an autistic child ages out of the system and is no longer eligible for the services offered at school. As a health care advocate, I wondered, how can I help?

Recently, there has been a stronger push to make parent aware of the signs and symptoms of autism. The Centers for Disease Control and Prevention (CDC) reports that every one in 110 children has a form of autism. The prevalence has risen over the past several decades perhaps due to more advanced diagnosis strategies.

According to the Professional Patient Advocate Institute, “Autism may be a leading area of need for patient advocates.” According to a new study published in the Archives of Pediatrics & Adolescent Medicine, “Four out of every 10 young adults with autism are forced to face their condition without the aid of support services, whether that be medical services, mental health services, case management or therapy.”

Thirty-nine percent of adults with autism between the ages of 19 and 20 receive no services according to the study. “The lack of care comes at what is often a critical time in the lives of individuals with the neurodevelopment disorder, as they attempt to transition into adulthood following the often strong care available in high school, when two-thirds of individuals have a case manager and three-quarters receive speech therapy.”

Not surprisingly, the study also found that minorities and low-income families are the most affected by the lack of services. “Blacks were there times less likely to receive services, while families making less than $25,000 were six times more likely to not receive services than families making more than $75,000.

Regardless of the socio-economic class or race, any loss of supportive services can lead to increased emotional and financial strain for family caregivers as well as reduced opportunities for the adults with autism to be engaged in his or her community.

The healthcare industry in the United States is changing. Regardless of one’s viewpoints and opinions about the what’s, who’s and why’s, it is going to metamorphosis in the next few years. While we spend ample resources helping and treating the massive Baby Boomer population, now is the time to also consider the needs of our other vulnerable citizens. I look forward to reading about more studies highlighting the needs of often overlooked young adults and their families.

To learn about Autism and what you can do to help, please check out the Autism Speaks web site: