What’s in a name? Apparently, everything, if you are a person with an autism or Asperger’s Syndrome diagnosis. At issue is whether or not to use ‘autistic’ as an adjective or to keep the traditional PeopleFirst language of an ‘individual with autism.’ The reasoning for both have great merit.
PeopleFirst fans would claim that a person would never call an individual with cancer a ‘cancerous’ person, so why wouldn’t the diagnosis always be listed last? Thus, a person with a cognitive disability or a person with a cold or a person with an autism spectrum disorder deserves the same respect by placing the name of the individual first.
To their credit, the neuro-diversitivists who prefer the term ‘autistic’ agree that PeopleFirst language is courteous and respectful for persons with significant disabilities. However, many neuro-diversitivists, particularly those with high-functioning autism or Asperger’s Syndrome, prefer the term ‘autistic’ because they believe that their differences are strengths, and are not related to a disorder. Further, they would like to see Asperger’s removed from the DSM-IV classifications for autism spectrum disorders, because of the societal stigma, misunderstanding and discrimination that is generated by the diagnosis.
On a personal level, my son doesn’t like to be called ‘autistic’ or ‘a child with autism,’ but he doesn’t mind using the term autism to explain his differences. My adult Asperger friends prefer the term autistic. As a writer, an advocate, a friend and a mother, I’m stuck. I want to respect everyone, and I care deeply about their feelings, but I’m not exactly sure what to do. PeopleFirst language can be unwieldy, so it is easier to use the adjective when writing, but for all the individuals who have worked their tails off to remove the R word from government organizations and to implement PeopleFirst language, I feel like a traitor for abandoning it.
Recently, I saw a wonderful brochure about people with disabilities finding ‘real jobs’ in our state. The term ‘autism’ was never used. Instead, the individual was described as having a ‘learning disability.’ I think the authors were on to something. Perhaps when we talk about challenges, we could be much more specific, such as an individual with special sensory needs or speech or social delays. (Or in my case, as I sit here with a sprained ankle, perhaps individuals with balance issues! ) Kudos to the state of Missouri Planning Council for Developmental Disabilities for creating a humane, respectful and much more descriptive solution.
But more importantly, I think we need to do a much better job of recognizing and celebrating an autistic person’s strengths. Our kids, our friends, our colleagues and our relatives with autism diagnoses have abilities — attention to detail, memory, creativity, musical, artistic, mathematical and other skills — that are enviable, admirable and valuable to society.
I personally do not want the term aspergers removed from the DSM only because it is vey descriptive of who my chidren are as opposed to HFA. There are so many levels of the spectrum that I think it is important to understand them all. I also am not so sure that learning diability works for autism. There are many more issues associated with autism in the workplace and these issues should be addressed. That being said I have no idea how to describe people anymore without insulting someone.
I agree, Elise. The areas of demarcation between PDD-NOS, ASpergers and HFA are pretty thin. All I know is that Connor’s latest Dx is HFA. He didn’t meet the Asperger’s Syndrome criteria because he had an early speech and language delay.
One thing I thought I’d try when writing is to remove the term ‘disorder’ and just refer to it as an autism spectrum diagnosis and THEN talk about specific delays. I am still working on it, and have decided to put my book on hold until I can edit it with the new nomenclature and have an adult friend with Asperger’s review it. Normally, I don’t like to write by consensus, but this issue is so important to the individuals that we are trying to support.
What do your sons think? They are young men now, and probably have some opinions.
- Mae
Actually they don’t really think about it at all. They just think of themselves as people. I can actually say that when they describe themselves they never use aspergers or autism in anyway shape of form. It’s just a part of what makes them them. They don’t see it as who they are. The who would be-Collegeman thinks of himself as a college student trying to figure out how to save the world and highschoolboy will refer to himelf as a “gamer.” Maybe its the way we raised them to not let their autism define who they are but to let their desires and beliefs define their future.
That’s wonderful! – Mae
My pitfall is that I use the terms interchangeably. I don’t know which way is right and don’t know that either is. I have even been guilty of (in frustration) asking myself/God/my son/the air why my child can’t be ‘normal’. I don’t mean it, and wouldn’t change him for the world, but it’s another one of “those words/phrases”.
I touched on this in my booklet “Same Child, Different Day”, but don’t think have the right/wrong answer.
Thanks for the thought-provoking post.
You are most welcome, John. Thanks for the heads up on your booklet. When you get a chance, let me know how I can find it. I’d like to read it. – Mae