It is difficult to read about autism in the newspaper nowadays without the article including the photograph of a young autistic child. The focus of the photograph is so much on the child that often other family members are excluded from view. What happens with the adult autistic individual? In 2010 the NIH Inter-Agency Consulting Council on Autism asked the question: “What does the future holds particularly for adults with autism?” Leo Kanner who first described autism within the medical literature described a small series of patients comprised of 8 boys and 3 girls whose average age in 1943 was 8 years. In 2014 the average age of the patients in Kanner’s series would have been 79.
For over a decade Marsha Mailick (UW-Madison School of Social Work) and her collaborators have pursued the natural history of the adolescent and adult autistic individuals in a prospective longitudinal study. The total number of individuals in her sample is 406 with a wide age range (10-52 at the start of the trial in 1998). Seventy percent of her sample has diagnosed intellectual disability (defined as an IQ less than 70) and 51% have a superimposed mental health diagnosis (primarily anxiety). Her study has focused on how parenting, school, socioeconomic status, health care, and work influence autistic symptoms.
One of Dr Mailick’s studies assessed activities of daily living using a scale known as the W-ADL. This scale consists of some 17 items and takes just a few minutes to complete. Dr. Mailick screened her ASD population and used a Down syndrome cohort as a control. According to this study, over time, ASD follows a curvilinear path that reaches a zenith in the 30’s and then declines. Contrariwise in Down syndrome there is a continuous increase in skills and, despite the fact that some of them may develop early Alzheimer’s, there is no evidence of age-related decline. The data for individuals with autism spectrum disorders suggests that there is a need to focus not only on the acquisition of living skills but also on maintaining the same.
Another study by Dr. Mailick indicates that parenting, in terms of maternal praise, improves outcomes. OK, not all of the results were unexpected nor novel; however, Dr. Mailick went on to emphasize that graduation from high school (for those ASD individuals that do so) is a MAJOR turning point in their lives. Using ADI-R subscales and SRS ratings she proved that this event provides for a slowing of improvements in both autistic symptoms and behavioral problems. Furthermore, slowing seems to be significantly different by gender as women show a 15X larger decline as compared to men! Unemployment itself was devastating to surveyed individuals as jobs are a source of sustenance, pride, and social support. Only 5% of her sample achieved gainful employment. In addition, only 25% of her sample had a secondary education and only 5% said they had a friend.
Given the large sample base it is not surprising that several deaths were reported for the study in question. There were cases of death due to liver failure (caused by Depakote damage), 2 choked on food (it seems that choking is something that happens more frequently with aging in autism and needs to be further studied), and others died from seizures. Several patients died from cancer with a stage III or IV tumor that had gone undetected. Many of the causes of death were preventable and call into question the quality of health care that these individuals are receiving. Furthermore, there is an urgent need to better manage medication in patients. There was a consistent trend throughout the years for patients to receive an escalating number of medications.