People with Autism? Or Autistic People?
Tuesday June 10, 2008
When I first started writing about autism, I was told in no uncertain terms that "people first language" - i.e. "people with autism" as opposed to "autistic people" - was always preferred by members of the autism community. As a writer for About.com, I am constantly challenged to fit my titles and metatitles into limited space, but I've worked hard to use people-first language as often as possible.
Now, as I read about the autism advocacy movement, I see that people with autism are starting to refer to themselves more and more often as... autistic!
With that in mind, I wonder if you would be kind enough to give me your opinion. Should I use "people first" language (even when it makes it tough to create great headlines) - or is it ok to sometimes use the word "autistic?"
Please vote in this poll. If you prefer a word other than those presented in the poll, please let me know by commenting on this blog.
Thanks in advance!
Comments
I voted I don’t care, either is fine. There are far more important challenges to deal with in trying to help my autistic son/son with Autistic Disorder than the chronological order of nouns and adjectives.
People who have autism. Our children are not autistic that is not how they are defined. If a person has cancer we don’t define them as cancerous. Autism is just one part of who they are, not their whole existence. My son is beautiful, bright, loving and has a great laugh. Autism is only a part of who he is.
In speaking with a young adult who uses a wheelchair, she conveyed to me that among others who use a wheelchair, they sometimes refer to themselves using a term that we would usually find offensive. But that if someone who did not use a wheelchair referred to them by that same term, it would be highly offensive to them. I believe that is the difference. If they are “choosing” to use that term to describe themselves, it is ok. But if they are not making the choice, it is offensive. I personally will continue to respect all people with disabilities and use reference to people first.
some people are more sensitive to the terminology than others, and when you’re on a blog with multiple different types of people within the autism community, it’s often hard to find a ‘one term fits all’.
I believe no matter what part of the autism community one represents, there needs to be sensitivity to all, and the understanding that no matter how it is termed, we’re talking about the same thing with no intentional malice.
I personally believe autism is a disorder, which is secondary to the person.
mercury poisoned people
I appreciate your attention to the language. Comment #2 is closest to how I feel. There is more to my so n than his autism.
There is more to blind and deaf people than their blindness and deafness but we don’t refer to them as “people with blindness” and “people with deafness”.
I think it is most respectful to use the term that the given population prefers and in this case, we (the 3 autistics in this household) prefer “autistic”.
Since Autism is considered a disease, and autistic is a description of a behavior pattern, I would much prefer to be refered to as having some autistic behavior paterns, than being labelled with a disease, especially since I do not consider my position on the autistic spectrum, Asperger’s Syndrome, to even be a handicap, much less a disease.
I’ve noticed that your comments are from people who are not themselves autistic. The autistic adults I know prefer to refer to themselves as autistic, because they see it as an integral part of their humanity. In my blog, I use the language preferred by autistics themselves.
When it is necessary to describe myself, and in my own mind, I’m autistic. It is an essential, impossible-to-separate-from-the-rest-of-me element of who I am. I allow others to identify themselves in whatever way they choose. But most of the time I just think of people w/ASD or people w/Excessive Normality or people w/funny dogs as _people._ Unless it serves a purpose, there’s no reason to say anything else.
My son is blond, my son is blue-eyed, my son is Polis and my son is autistic. It is just as much a part of him as all of those other things.
Dear Fred,
Perhaps if you listened to some of the information regarding mercury poisoning and what it really looks like compared to Autism, you would have a better understanding of why your comment is misleading and incorrect.
Mercury and thimerosal do NOT cause Autism however certain metal poisonings can cause Autism-like symptoms. Keep in mind that Autism-like symptoms and Autism are NOT the same thing.
Elyse: you say “certain metal poisonings can cause Autism-like symptoms. Keep in mind that Autism-like symptoms and Autism are NOT the same thing.”
I understand what you’re saying: mercury poisoning may LOOK like autism, but it’s a complete distinct disorder.
Here’s my conundrum, though. ASD (outside of Rett syndrome and Fragile X) is diagnosed entirely as a result of observation of behaviors and assessment of abilities/challenges. Since that’s the case, autism really IS diagnosed on the basis of a collection of “autism-like symptoms.”
That being the case, I’m finding it very tough to distinguish in a useful way between “real” autism and “autism-like symptoms.”
My question, at this point in history, is - is the autism spectrum, in fact, a collection of multiple disorders which manifest themselves as “autism-like symptoms?” Is it possible that those symptoms are caused, in some cases, by toxins; in other cases by genetics; in yet other cases by food allergies?
Just tossing the thought out there.
Lisa (autism guide)
The term “autistic” makes me cringe. My son is American, he’s not autistic. He has been diagnosed as having PDD-NOS. When people hear Autistic they think of the serious end of the spectrum. People first, you can’t go wrong.
I believe the “People First” language is mandated for use by federal agencies, any researcher or other entity receiving federal monies over $10,000 by the Rehabilitation Act of 1973. This was seen as a way to reduce discrimination, if the “person” was recognized as a person before he/she was recognized as some group of behaviors or symptoms. How we describe ourselves or our children and siblings may indeed be different from how we may want to be described by the rest of the world. I’d like people to recognize my son as a young man first, before they recognize his uniqueness. Many people upon first meeting my son, speak to him in an adult manner and then when learning he has autism and may have difficulty responding verbally to their questions, they immediately speak to him as if he is a baby. I’d like my son to be comfortable with himself, as much as anyone else can be comfortable with himself/herself. Most of us find something about ourselves uncomfortable. And sometimes we label ourselves with these things. I’m fat. I don’t say “I am a person who is fat.” I notice when I label myself, it is almost 100% a socially negative label, fat, stupid, slow, etc.. I don’t think I label myself with socially positve labels. Sometimes, when my son is having difficulty with sounds, smells, or confusing situations, he identifies his difficulties as “my autism”. He does not identify non-difficult experiences as his autism. Maybe that is something I have let him believe, that his autism can lead to him having difficulty. If so, I didn’t mean to do that. I don’t want him to see his autism as a socially negative label, but I do want him to recognize difficult situations so he can learn appropriate coping methods. Certainly, he has received that message from society at large. I notice when he is seen as a person first, he is granted more opportunities. I guess the question is if we identify ourselves as “autisitcs” how do we keep society from using that terminology to discriminate against us? Maybe using the shared identity as “person” or “people” will reduce discrimination.
I think both are acceptable and that one can use the phrase that will get the most sought-after response from their audience, no matter what the size or environment. In written documents, both can be used to tap into the semantics of the reader as well as appease the readers who favor one or the other.
If there is something to be gained from the audience, using the language that will help them see your side could be beneficial. If someone believes strongly “people with autism” vs. “autistic,” then that is what they should use and can use their position as an educational opportunity and/or forum for advocacy.