I live with a disorder that an increasing number of people describe as a spectrum: epilepsy. Some people with epilepsy experience irregular simple absence seizures in which they may stare off momentarily without anyone really noticing. Others suffer — and I use that word purposely — through regular, sometimes hourly, tonic clonic (grand mal) seizures. These are what many people think of when they hear the term epilepsy, but the reality is that epilepsy means many different things. It is up to you, as a person living with the disorder, to explain the kind of seizures you have (or the “end of the spectrum” you are on).
People who live on the autism spectrum similarly experience many variations of their disorder. Those with mild autism are often diagnosed with Asperger’s syndrome. They often have difficulty with social interaction and sometimes experience repetitive behaviors or speech patterns. But, unlike many other people with more severe autism, cognitive development is not affected. Some people with Asperger’s credit their disorder with increased intelligence or artistic strength.
Last week the American Psychiatric Association released proposed revisions to the Diagnostic and Statistical Manual of Mental Disorders. The revisions included a recommendation to drop the term Asperger’s, ultimately diagnosing everyone as being on the autism spectrum instead of singling out those with Aspergers. What do you think of this proposal?
Do you, or does someone close to you, live with autism or Asperger’s? Should they be classified together or separately? Do you live with another disorder, like epilepsy, which has many variations? How does your experience influence your thinking on this change? What are the benefits of being “on a spectrum” as opposed to singled out?
- Darryn Sikora: director of the autism program at Oregon Health and Science University’s Child Development and Rehabilitation Center
- Jonathan Chase: person with Asperger’s syndrome and a board member of the Autism Society of Oregon
- Rose Case: mother of a 25 year-old son with Asperger’s and the secretary of the Portland Asperger’s Network