This is an unusual situation, as the diagnostic criteria for children have been updated in only the last ten years. Most adults on the spectrum have no idea that they have high functioning autism/ Asperger’s until other people start noticing strange behaviors in their loved ones. When they point it out to their significant others or adult children, it becomes a personal journey to self discovery.
A recent news story on NBC featured a husband and father who had the distinguishing characteristics of someone with high functioning autism. He had spent most of his life not knowing there was anything different about him that set him and his peculiarities apart from others. It was his wife of ten years that began to notice repetitive ritual behaviors, avoidance of loud noises, and misunderstandings in communication such that she had to reword whatever she said in a different and more direct manner so he would understand her better.
Once she had read up on autism and the associated behaviors, she recognized that her husband and the father of their two boys might have autism. When he went in to be diagnosed, the behavior analyst was able to see that he, quite clearly, was a high functioning adult with autism. This is pretty much how adults with autism spectrum disorders discover that they have it.
Rarer still are adults in group homes who were previously diagnosed as having mental retardation. Because autism was considered far too rare a disorder when they were children, their language and social deficits landed them the label of “mentally retarded”. These adult patients, when seen again now and reassessed, have been found not to be retarded, but actually adults with ASD. It takes their care program in a whole new direction, because most adults diagnosed thirty or more years ago with mental retardation who do not have it now were not allowed to go to traditional schools or were taught how to read if it was assumed they couldn’t learn.
Adults in the above situation are not too old to learn to speak, communicate, read or do anything else. If they obviously understand what is being said to them, then they can learn and benefit from treatments and therapy that children with autism have used for the last decade. Because there is so much focus on children with ASD, people have forgotten that there might be a lot of adults with ASD and that they too, could benefit from skills enhancing programs and therapy.
If you think that a loved one has either been misdiagnosed early in life or shows signs of an autism spectrum disorder, you can schedule an appointment with an applied behavior analyst and a neurologist who has experience reading brain scans of those with ASD. The high functioning adult will be able to consent to the testing on their own and should be encouraged to do so if the unusual behaviors have a tendency to interfere with daily life or relationships. Lower functioning individuals will need their physical/ medical guardian’s permission for the testing. Lower functioning adults may have problems with the Mild Mental Retardation (MMR) / brain scan testing, so it’s important to note that with the neurologist in advance and discuss options in how to proceed. High functioning adults may also have a problem if they don’t like being enclosed or the noises of the machine make them jumpy. Keep a diary of repetitive or seemingly obsessive behaviors, sensory defensiveness, a need for hyper stimulation, language and communication problems, and anything else that might help the analysts and doctors diagnose your adult loved one.