Better Understanding Adults with Autism: The Need for More Support

One theme that often comes up in our weekly reporting is the tension between the bountiful amount of research, thinkpieces, and community activism working to increase awareness about autism in children and the lack of support structures in place for adults with autism. After all, the vast majority of autism research is focused on children as well as most of government funding goes toward children.

And now we’re starting to get to a point where the amount of adults with autism and other mental or social disorders is currently overwhelming the rate of funding necessary to cover all the individuals in need. According to Autism Speaks Vice President of Adult Services Leslie Long, “There are hundreds of thousands of people (with autism and similar disorders) across the country who are waiting for waiver support. There is not enough funding for the tsunami of people coming into the adult system. Our budgets are getting tighter and it’s not going to pay for everyone who needs services. The demand is greater than the supply.”

And when looking closely at the numbers, it’s clear that this is an issue that only more funding will fix. After all, based on the latest figures, the average cost of case for an individual with autism is about $1.5 million over a lifetime. This cost actually doubles when there is a co-occurring intellectual disability in the individual.

A study recently conducted by Drexel University drew a connection between adults with autism and high rates of unemployment cause by a lack of socialization, which may be a result of a sudden lack of financial support while they are still in school. “School funding (for autistic adults) ends very abruptly at 21,” Long said. “Underfunding makes it hard to make a smooth transition (into the work force).”

In addition to the disruptive effect on the work force that this lack of financial support is causing, another new study out of the University of Rochester is highlighting the psychological cost of autism in adults, finding that adults with autism are more likely to suffer seizure disorders and depression while young adults with autism are reporting higher rates of hypertension, high cholesterol, allergies, and anxiety.

“Adults with autism frequently face barriers to accessing health care and receiving recommended treatments for common problems,” lead author Robert J. Fortuna says. “Therefore, greater awareness is needed to ensure that adults with autism are treated for conditions that are more prevalent with autism as well as conditions that are commonly encountered with advancing age.”

So how can a community work together to provide the support for their adult members with autism. One example can be found in Cumberland County, PA where a variety of organizations and initiatives have sprung up to provide important opportunities—like work and therapy—for adults with autism. One such example is the county’s Red Tomato Farm and Inn, which gives adults with autism the chance to interact with others while completing farm-related work.

“Red Tomato Farm is a great place for our individuals on the autism spectrum,” said Red Tomato Development Officer Deborah Shaffer. “It provides them with work through farm tasks and it creates opportunities to interact with the general community. It is a new concept as far as adult training facilities go. They get the opportunity to work with gardening, towing and with animals.”

Thus, while adults with autism in our society are in need of a greater degree of awareness and support in terms of helping them to find work and get better health care, at the local level we can see how communities can come together to better care for those who need it the most.