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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Wednesday, January 11, 2006

 

Paying Attention to Autism Vernacular

In autism and dealing and describing our children, I believe that how we describe them reflects how we as parents VIEW them. The use of language in how we refer to autism directly relates to how we feel and relate to our children.

I admit that some days I feel confused. I use terms like "an autistic child" as opposed to "a child who happens to have autism." It is true that we are all more than our labels. Autism is a difference, not a disability. I find myself constantly correcting my language, or making mistakes. Yet, I think as parents especially, we ought to be cognizant and careful of how we use it.

Wrong Ways of Stating Things:
My child is autistic
My child is disabled
Autism is a disease
Autism is a disorder
My child is special needs
My child will be in an institution
ABA is the only LIFESAVING therapy for autism
Autism is an epidemic


Right Ways of Expressing Things
My child learns differently
My child is unique
My child has special requirements
My child has ability
My child will learn on his/her own timetable
My child can learn

There is more...anything that chips away at the unique identity of the child, the child as a whole person instead of "half" of one (normal versus abnormal), is wrong.

It is easy to pull out my hair with autism therapies too. ABA, RDI, Floortime, SI, whatever. At the end of the day, I still ascribe, with my whole heart, to a program that meets THE UNIQUE NEEDS OF EACH CHILD. The problem with programs, per se, is a dangerous lull to blanket approaches, thereby assuming that every autistic child has the same learning needs. In fact, there is nothing more difficult than to help our children and program for them becuase of adherences of certain teaching communities to one program or another. A parent really has to have some balls. A parent has to have faith amidst all the influences and seeds of doubt that many communities wish to impose upon us. It takes a lot of research and a lot of guts. I call every parent to acknowledge the doubt and exercise the time and patience it takes to learn everything you can get your hands on. Then, go back to watching your child and your intuition. Then and only then do I think we can do the best things for our children.

Here's an answer that I repeat to myself when this or that comes pounding in -- what is making Adam attentive and willing to learn? What makes him happy? What makes him able to adapt to the world around him? What are his abilities I can use as bridges to learning? If we can answer those questions, we are well on our way to building a program that works for him.

I used to be co-chair of NAAR here in Toronto (my title changed a couple of times from sponsorship chair to co-chair, so I'm not sure what I was, actually...I raised some money...). NAAR uses vernacular I highly disapprove of, albeit I do appreciate all the research that they do support. It uses CURE to market itself and since there is no, and likely never will be, a cure for autism, I find this highly objectionable. I prefer to address the research in order to understand autism, teach better and create more awareness and understanding. I find the CURE for autism, highly controversial and takes the negative and disabling view towards our children. Instead of fostering a community of genetic diversity, and accepting that as parents and fundraisers, there is a community of people who hate people with autism and insist on CURING them. Think of it that way for a change. Maybe we will all view our children a little differently now.

4 Comments:

Blogger SquareGirl said...

You got it right about the Intuition...that is the thing we should be relying on most when teaching our children, as apposed to one specific brand of therapy.

And I know it's all semantics, but I always say that a person "was diagnosed with autism", as it is not WHO they are, they are not IT, they don't have IT, they have simply been diagnosed with it.

Good Post.

12:11 AM  
Blogger Kristina Chew said...

"Autism is a disability." Disability Studies seeks to combat the notion that being disabled (physically, cognitively) is pejorative---rather, Disability Studies shows how "disability" means to be different abled, not less abled; seeks to expand our understanding of what it means to be human. Charlie's is a neurobiological disability--much more than the kind of "difference" I have lived with as an ethnic American and a woman. Disability can be empowering (and semantics a bit perilous).

1:43 AM  
Anonymous Bonnie Ventura said...

Hi! I just discovered your blog, and I completely agree with you that the words we use to describe our children affect how we relate to them and how they feel about themselves.

I have a collection of links to positive parent sites and pro-neurodiversity sites, and I would love to add your blog to it!

I know from my own experience that positive words and inclusion are very beneficial. I am hyperlexic like your son and had many problems in school as a young child because I didn't understand anything about social interactions except what I had read in stories. I just wanted to be Heidi or Peter Pan all day long! My parents kept me in mainstream classes (which I'm sure wasn't easy), skipped me ahead two years in school, and let me think that my social problems came from being the youngest kid in the class. They also gave me plenty of books about characters with autistic traits (A Wrinkle in Time was one of my favorites).

For most of my adult life, I didn't realize that there was anything particularly unusual about my childhood. Although I knew that most kids didn't learn to read as early, I just assumed that there was a large amount of natural variation in how people learn. I never thought there was anything unusual about my son's autistic traits, either. (He is now in high school and is doing well both socially and academically.) Having positive expectations for children is so important in raising them to be happy and confident!

I also agree with you that NAAR's fundraising for a "cure" is highly objectionable. And the language they use is the least of my worries! In an article posted on MSNBC.com last February, one of the leading scientists frankly admitted that he expects the research to lead to a prenatal test within 10 years.

(Scroll down to the interview with Dr. Buxbaum, about two-thirds of the way down the page. He makes it very plain that the ultimate goal of autism genetic research is eugenic abortion.)

I see that you have Aspies for Freedom in your list of links, so you've probably read some of Amy Nelson's comments about prenatal testing. She is not exaggerating the situation -- I only wish she were!

2:30 PM  
Anonymous Anonymous said...

Your article today about a picture of Adam was so beautiful to share.
God bless you.

The Scorpion

5:28 PM  

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