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.