His death remains as unexplained as his original problem, although the two are likely to be related. It reminds me that there is mortality as well as morbidity associated with autism and related developmental disorders. We have an extremely long way to go to provide full access to adequate care for children, adolescents, and adults with autism. It is very difficult to confront attitudes as a physician that I only suspected as a child. Insurance companies, state agencies, school administrators, and other physicians continually turn away from caring for people with autism.
Much more attention is given to paperwork than provision of care and services.
This is not the main purpose of our meeting today, but I can not speak without mentioning this. Although many of the most severe problems are emotional and behavioral, insurance companies discriminate against the best treatments by the most qualified providers, with the result often being time lost from work for parents, depression in parents, and most importantly, suffering would otherwise be treatable. The needs of the patients and problems in the systems of care and education have seemed overwhelming since I started my practice in the mid 1980s, so the thought of an increase in the prevalence of autism is probably something I wouldn't want to confront. However, comment on changes in systems that are largely responsible for the apparent increase is appropriate. An increase in autism in Illinois schools has been cited as evidence a rise in autism prevalence rates, but autism is still underestimated in Illinois schools.