Measuring Outcome and Addressing the Needs of Adolescents and Adults with ASD
This is a guest post by Ruth Carper, Ph.D. Dr. Carper is a member of the research faculty of the Center for Human Development at the University of California San Diego (chd.ucsd.edu; radlab.ucsd.edu). She is beginning a study on the cognitive and behavioral changes that occur in people with ASD over the age of 30 years, and on the support services that are available to people in this age group.
Kids with ASD get lots of attention in the media, in research, etc. But what happens when those kids are 20? Or 40? These kids we see today will grow up, do grow up. They will become adults, some able to function independently, go to college, and have “normal” lives. Others will move to group homes or supported living services, and some will stay at home with family. But they will grow up and there are a great many issues that families must contend with and plan for and a great deal of information that service providers and scientists don’t yet have.
In the past, studies of long-term outcome in adults with ASD only looked at very basic measures. Outcomes were classified as ‘good’ or ‘poor’ based primarily on independence – holding a job, living outside of the parents’ home – and simple measures of overall intelligence. While this information is useful, it doesn’t provide much detail about how relevant symptoms and specific abilities change during adolescence and adulthood. Social skills often improve, but we don’t yet know to what degree, or whether skills continue to improve across the lifespan. Repetitive behaviors are thought to diminish or change in quality. Only recently has research begun which will help us to understand how symptoms and abilities change as people with ASD grow up.
At the recent International Meeting for Autism Research (IMFAR), the special Educational Symposium “What Really Matters: Measuring Outcome and Addressing the Needs of Adolescents and Adults with ASD” introduced some of these issues. (The symposium was organized and moderated by Drs. Patricia Howlin and Peter Szatmari. Presentations were given by Julie Taylor, Themba Carr, Somer Bishop, and Kaite Gotham.) While a short symposium can only scratch at the surface of such a broad topic, the information offered was informative and is summarized below. However, the thing that struck me most about the session was that it was standing room only, showing the growing interest and attention that will be paid to the needs of adults and adolescents with autism.
The transition to adulthood
Our education system provides appropriate (more or less) training as mandated by IDEA until the child reaches 22 years of age. But access to services changes drastically after that, with many services no longer available to young adults. This time of transition can have a major impact on young adults with ASD and on their families. Any parent reading this blog knows that change can be quite stressful for an adult or child with autism. The drastic changes to daily routine, structure, and social opportunities can affect mood, anxiety, and behavior. One study examined the challenges that occur during the period as the individual exits the school system.
The daily routine, structure, and social opportunities that are provided by the school setting, as well the behavioral interventions that may be implemented there, generally help to improve the child’s social skills and behaviors. Not surprisingly, the loss of these opportunities reduces the rate of that improvement and may even result in setbacks. Researchers followed a group of children and young adults during their school years and saw a continuing reduction in the frequency of unwanted repetitive behaviors, ongoing improvement in pro-social behavior, and improvement in internalized behavior. Unfortunately, when these children left high school, their rates of improvement slowed substantially. For the most part behavior didn’t get worse, but the change in rate suggests that further gains may have been possible but that those opportunities were missed. If structured services were more available for adults with ASD, substantial gains might continue.
In addition to the behavioral and cognitive issues that define autism, additional problems may arise. The challenges of living with autism can produce anxiety and depression both in people with autism and in their families and caregivers. This may be particularly problematic for higher functioning individuals. Even among adults who do not have autism, greater awareness of one’s own social limitations or poor social skills, is known to correlate with depression. Higher functioning people with ASD generally have greater insight into their own limitations and that may affect mood or produce anxiety. Insight into a person’s prospects for independent living is also a predictor of depression.
More cognitively impaired people with autism may be somewhat protected from these secondary stressors simply by being less aware of their own limitations. But it’s difficult for us to know. Communication skills are poor of course, but it’s particularly difficult for them to communicate about abstract concepts such as emotions. A range of emotions is certainly felt, but can’t be described in words. And the overt symptoms that can be indicators of depression in young children with similar language difficulties, may not be telling in autism. Typical hallmarks of depression such as changes in appetite or sleep patterns are often abnormal in ASD even without depression.
Effects on the family: Cultural differences
Having a child with autism, whether he is still a child or is an adult, can have a substantial effect on the life of the parent. Family relationships can be affected, friendships, activities, and finances, can all be affected. In a survey of parents, mothers were asked to reflect on the degree to which their child’s ASD had affected their own lives and compared the effects reported by African American and Caucasian mothers of different levels of education. Caucasian parents generally reported a greater negative impact on their daily lives than did African American families. The moms that reported the least negative impact were African American parents with less education (e.g. high school as opposed to college). This suggests that these families are better able to cope on a personal and emotional level than other families. This is somewhat surprising given that these moms probably did not have the same financial resources that are typically available to families with more education. This may also be surprising in light of the reported difference in services utilized by these families. During the school years, Caucasian children with ASD receive many more hours of treatment outside of school than do African American families. However, it is unknown if this reflects a true difference in access, or is a result of the lower perceived impact.
This two-hour symposium was only able to discuss a small part of the very large topic of adolescence and adulthood in autism. We still need to know more about how abilities and symptoms change in the longer term, into middle age and even into senior years. Families still need to know if sufficient care services are available and are appropriate for their adult children. We need to know what interventions, training programs, and other support services are most effective for improving quality of life. Fortunately, funding agencies, such as Autism Speaks and the National Institutes of Health, are now directing effort toward these issues, specifically asking for more research on later portions of the lifespan in autism. Where funding goes, research will follow, so we can expect a better understanding of these issues in the coming years.
Please also visit our Advancing Futures for Adults with Autism initiative at www.afaa-us.org and “like us” on Facebook, where we regularly post articles and items of interest regarding adult issues and services.
To read complete coverage from IMFAR, please visit http://www.autismspeaks.org/science/science_news/imfar_2010.php.