How much do we currently know about the long-term prognosis of autism, and what challenges do we face in terms of health care and management strategies?

There is almost no knowledge about the later-life development of individuals with autism. Autism was originally described as a disorder of young children. More recently the field has focused on transitions to adulthood.

But having been first described in the 1940’s, we now have many examples of young children with autism who grow up to be older adults with autism . Yet there has been almost no systematic studies of this population.

This lack of knowledge is a huge concern given that the prevalence of autism in school-age children is now thought to be as high as one in one hundred, given that the recognition that for most affected individuals, autism is a life-long condition, and given the aging of individuals in western societies – we have no idea what to expect in the way of possible changes in behavior, cognition and medical status in older individuals with autism.

We also have no idea how to deal with the unique aspects of care for this age group that involve knowledge of both geriatric medicine and autism. And, we do not have a trained work force to knowledgeably care for these individuals as they age.

Could you give us some background to the area of research that you focused on in this study?

We started our work with a very broad scope to gain a sense of the major problem areas in older adults with autism. We then narrowed the scope of research to focus on the neurological/motor exam given preliminary findings from our first pilot study in North Carolina.

Overall, the main finding from the study is that adults with autism may have substantially elevated risk for Parkinson’s disease.

There is good reason to think that as far as findings in older adults with autism are concerned, this report is just the tip of the iceberg.

Our research was not able to definitively diagnose Parkinson’s disease (research criteria requires a more definitive assessment, including longer term follow-up).

However, our findings, together with others recently by Lisa Croen on a medical record review of patients seen through a large clinical population in California, strongly suggest that further research is necessary to document that this problem exists. It is also needed to explore associated features (such as cognitive decline), to understand its causes and to explore appropriate treatment.

What important questions remain to be answered?

There is good reason to think that as far as findings in older adults with autism are concerned, this report is just the tip of the iceberg. As recently as the 1990’s the first textbook of Geriatric Psychiatry was published. Geriatric psychiatry is now a bedrock component of the field of psychiatry and medicine more broadly.

The overwhelming focus in autism to date has been on children, adolescents and more recently young adults. But research on ‘older adults with autism’ is a new frontier that will likely reveal very rich and important new knowledge about this condition.