Better Support Needed for Parents of Autistic Adults

Dana Alliance member Barry Gordon, M.D., is familiar with autism on both a personal and professional level. Gordon, a behavioral neurologist and cognitive neuroscientist at Johns Hopkins with interests in disorders of speech, language, and memory, is also father to a severely autistic 22-year old son who cannot speak.Gordon_Barry

“It was beyond irony when our son proved to be unable to speak and unable to learn,” he said at a July Capitol Hill briefing, hosted by AAAS through the support of the Dana Foundation in conjunction with Rep. Chaka Fattah (D-Pa.). [See also our interview with him in 2012.]

Gordon and his wife, Renée, shared their personal story at the briefing and the steps they’ve taken to ensure that their son, Alex, receives the best instruction to nurture his communication skills. But as Alex aged into adulthood the family faced new challenges—school ended but his need for round-the-clock care remained.

Gordon recently addressed this challenge in a piece for PBS in which he asked the question, “What can be done to help parents of autistic adults?” In the article, he outlines the requirements needed for daytime and residential care, and acknowledges the ongoing struggle parents of autistic children face to find the time and money needed to navigate the current system. He is hopeful, however, that the system can be made better so that the quality of care is improved and the cost is less.

The current system is at best ponderous, sometimes impenetrable, incomplete and certainly very expensive… Do we have the will to focus our energies on improving the current system rather than continuing to spend dollars on efforts that simply maintain the existing system? If even a fraction of the money and effort now spent on ongoing care of these individuals were restructured into coherent plans that truly focused on the lives of adults with autism, the payoffs to society, to these individuals and to their families is likely to be immense.

With one in 68 children diagnosed with autism spectrum disorders in 2014, the need for improvement is certainly pressing. With leaders like Gordon, dedicated to the research and to the public’s education about the condition, we can hope that better policies are not far off.

–Ann L. Whitman

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