I recently connected with a couple of awesome FB groups for parents of kids with Asperger’s. I began to wonder about why Asperger’s was still being used in the online community (in 2017), since its removal from the DSM-5 in 2013? Here’s what I’ve discovered.
Many parents have heard the name “autism” before. But “spectrum” and “autism spectrum” may be unfamiliar. Specialists, doctors and teachers now use the term “autism spectrum disorder” when years ago we just used “autism”. By considering autism and its symptoms on a continuum from severe to mild, we recognize a wide range of abilities and disabilities. We see people who are severely affected by the disorder, others who have very mild symptoms, as well as those in-between. Classic autism (like the title character in the 1988 movie Rainman) has in the past been called Kanner’s autism. Milder forms of the disorder may be referred to as Asperger syndrome. Both names are from the doctors who first described these conditions. Autism spectrum now includes severe and mild forms and all those in-between. You may also hear specialists refer to children as being “on the spectrum”.
The term Aspergers was used from 1994 – 2013. It was removed with the publication of the DSM-5 in 2013 (the Diagnostic & Statistical Manual, a handbook used in the U.S. and worldwide, as the authoritative guide to the diagnosis of mental disorders). Those previously diagnosed with Aspergers could keep their diagnosis, and new diagnoses would have to be either “Autism Spectrum Disorder” or “Social Communication Disorder”. Autism got divided into:
Level 1 – Requiring Support
Level 2 – Requiring Substantial Support
Level 3 – Requiring Very Substantial Support
My son got an Aspergers diagnosis in 2006, in grade school, and he needed documentation in 2014, in college, so his doctor signed his paperwork “Autism Spectrum Disorder”. I assumed everyone made the same change. I was wrong.
While some parents had no trouble with the change, and used the term “autism spectrum”, many parents are still hanging on to the label “Aspergers”. There were a number of reasons for this. Some parents don’t use the autism label because others see how high-functioning their child is, and are skeptical and may argue about the diagnosis. Other parents felt the need to say “high-functioning” when they talk about their child’s diagnosis to differentiate it from classic autism. A number of parents said they felt the term Aspergers was understood better and more quickly. A few parents still call it Aspergers because their child never had speech or developmental delays. One parent noted she calls it autism and then “Aspergers type” because the general public does not know about the DSM-5 change.
The autism spectrum is so broad, ranging from non-verbal individuals, to folks like my son who pass for neurotypical. But more than that, there are other families like mine, still dealing with the trials and triumphs of Aspergers even though it’s not called that anymore.
I feel very much at home with these families! Thank you all!