It seems extraordinary that a condition first described only 75 years ago is now estimated to occur in one in every 61 births. Yet, that is the case with what is now referred to as “Autism Spectrum Disorder,” or ASD. While advances in knowledge and services for younger people with ASD have followed the recognition of this high prevalence, our understanding of the needs of older people with ASD and the development of services to address these needs are largely unmet.
ASD was first identified in 1943 as a separate entity by Leo Kanner, the first child psychiatrist at Johns Hopkins. He described 11 children who had difficulty forming relationships with others. Most had difficulty using words and some had intellectual disability. A year later Swiss psychiatrist Hans Asperger described children with similar problem but normal intelligence and intact language, but his description received little attention until the 1970s.
Honing the ASD Description
During the 1940s and 1950s, most psychiatrists and psychologists dismissed the claim that this was a previously undescribed illness and attributed the symptoms to diseases such as schizophrenia. However, as clinicians and researchers saw more children with the symptoms described by Kanner and Asperger they acknowledged the uniqueness of the condition, realized that it was likely present at birth (although often not recognized for several years), that early identification could lessen the negative impact of the symptoms and that the symptoms persisted into adulthood.
Today, these two descriptions are recognized as representing a single entity whose symptoms of impaired social communication and restricted interests are on a spectrum from mild to severe, hence the name Autism Spectrum Disorder. Many individuals with milder symptoms of ASD are successful in their family, work and social lives. Others need lifelong support and are not able to function fully independently.
Not surprisingly, debates about the definition of ASD continue. Some argue that the mildest symptoms fall within the range of expected human variation. These advocates argue that people without ASD should be considered “neurotypical” people and that those who fall on the ASD spectrum do not have a “disorder” but rather are “different.“ Still others, mostly advocates for the more severely impaired, believe that the need for lifelong services indicates that that ASD is a disease that deserves society’s understanding and fiscal support for housing, education and work.
Although first described in children, ASD is clearly a lifelong condition. Many long-term follow-up studies show that symptoms persist into adulthood and old age. I was able to interview or obtain information about 11 of the more than 100 patients evaluated by Leo Kanner in the 1940s and early 1950s who were still alive in the 2010s. Some were fully dependent upon others for food, lodging and day-to-day activities. Others had obtained advanced degrees, held a single job throughout their lives, had healthy children and maintained lifelong relationships. In other words, the condition presents challenges in everyday living throughout the life span for some, but others are able to live fully independent lives. This suggests to me that a “one-size-fits-all” approach to helping people with ASD is neither appropriate nor beneficial.
Outlook, Causes and Aging with Autism
In the past, people with ASD had shortened life expectancy, but today many individuals with ASD symptoms live into old age. We lack a clear understanding of the needs of these older individuals. We do not know whether there are unique medical, psychological and cognitive challenges that people with ASD face as they age, nor do we know whether interventions throughout the lifespan can increase independence, quality of life, medical well-being and social functioning. Hopefully, bringing attention to these questions will lead to answers that improve our ability to help those with ASD meet these goals.
'Today many individuals with ASD symptoms live into old age.'
Many distinct causes of ASD have been identified. As many as 10 percent of people on the ASD spectrum have an identifiable genetic abnormality. For example, some individuals with Down Syndrome have the symptoms of ASD. In addition, more than 100 gene variations have been identified that are associated with an increased risk of having ASD. We do not know whether therapies will vary based on the cause of an individual’s ASD or whether the social, emotional and functional impairments that some people with ASD experience will respond to the same interventions no matter what the cause. What is known is that the group of people who fall into the ASD category have higher rates of occupational, social, functional, psychological and health difficulties at every age, but many people with ASD thrive in these areas.
Perhaps one-third of people with ASD also have intellectual disability. It seems likely that these individuals will need different supports and interventions than those without intellectual disability.
One fact about successful interventions in ASD that is well-documented is that some difficulties are age- or developmental-period specific. Language communication interventions are most effective very early in life. Interventions targeting the transitions to school and into the workforce are effective when provided for individuals at the ages at which those events usually occur.
I believe that interventions targeting transitions that occur in mid- and later life, such as having children, retiring, developing complex medical illnesses and experiencing the deaths of parents, spouses, family members and close friends will be needed, but only by careful study will we be able to determine if interventions targeting these challenges are effective.
Some older adults with ASD face unique challenges. We do not know how to meet the needs of those who have required lifelong support as their loved ones age and become less able to support them. Many of the programs that have helped adults with ASD to remain independent become overwhelmed as their clients experience declines in health and cognition. We do not know whether new services need to be developed to meet these complex needs or whether existing programs can be adapted to meet the specific challenges that the psychological challenges of aging, retirement, increasing physical limitations and decreasing size of social networks present.
Recognizing what these questions and issues are is a beginning. Now is the time to focus on finding answers and solutions.
Peter Rabins, M.D., M.P.H., is the Richman Family Professor of Alzheimer’s Disease and Related Disorders, Emeritus, in the departments of Psychiatry and Medicine, at the Johns Hopkins School of Medicine in Baltimore, Md.