What to Say or NOT Say About Autism

I've been thinking about writing a post about an agreement about what not to say about autism. Because there is so much disagreement, lack of scientific evidence and understanding about autism, I am always struck with the "assurance" of some people on how they can speak about autism. Be in so-called "Fact Sheets" created by parent groups, or some professionals who speak about autism as a disease or condition, with lack of substantial understanding, we have to agree at least about what NOT to say about autism, until we know otherwise. Based on what we do know, I suggest we begin by creating a list that we can all reference when speaking about autism and further, put pressure on the Ministry of Education and others to impose an anti-ableism policy as much as we enforce anti-racism. While the drive towards inclusion is there in words (in the Ministry of Education's Special Education Transformation document submitted on May 6, 2006) we can't enforce autism acceptance, it seems, without an enforcable policy, and a means by which teachers and schools cannot turn away any child, no matter what the disability. Turning away children with autism is happening far too often in both public and private settings. "We don't take autistic children," or "we don't want to look like a speical needs school," is something I hear almost daily. Or "we are far too verbal a school. Your child may have difficulty here." Or my favourite: "we don't have enough space in our school for shadows." While there is intent to accept, there is still a great amount of hesitancy.

Words are not enough. Bad words are even harmful. Semantics plays a role in how people are viewed. So, I've started a list of what we might agree on as a society in how we reference autism, that I thought everyone could contribute to, so this is just a stab at it. It's a draft about what we might agree on, which may lead to a list of what NOT to say in light of lack of evidence, about autism:

1. Agree that murdering an autistic child is not excusable simply because the child is autistic. Therefore, although living with challenged kids is just that, "a challenge," let us not excuse violent acts in our reference to autism;

2. Agree to refer to autism as a disability that requires accomodation;

3. Agree to refer to autism as an ability as education needs to cater to the unique learning needs and abilities of autistic children who are as learning "different" as any child;

4 Agree to reference autistic people as people, not people "afflicted" with a disease or illness;

5. Refrain from referring to autistic people in pejorative terms: "autism is a living nightmare," horror, etc. as it does not connote any respect for the living autistic person;

6. Agree to invest in Understanding Autism and become less fragmented in terms of investigating appropriate teaching methodologies for autistic children;

7. Refrain from using "Autism Treatment" to "Autism Accomodations and Education" in order to respect the fact that we do not yet fully understand autism and the manner in which autistic people learn;

No parent should find it necessary to speak about their children in pejorative terms in order to receive effective accomodations which should be backed up by accurate science. There is a way of acknowledging struggle without spotlighting children in a miserable way. I will quote here from Peter Szatmari, from his testimony to the Senate Committee on Social Affairs, Science and Techonology on November 22, 2006, in which Eric Fombonne and Michelle Dawson also testified:

Szatmari: "The first thing is we do not know enough. [bold mine] As Ms. Dawson pointed out, there is only a single randomized control trial of the efficacy of early intentsive behavioural intervention. There are not many programs in this country that have such a large investment that are based on only a single randomized control trial. It works. However, there is a lot of misinformation. I would argue that the 40 per cent cure rate that is often quoted is not really consistent with the data. It is not based on teh best-quality study that is available. There is no question that some children with autism spectrum disorder do need intensive early behavioural intervention. It is very expensive. However, not everybody needs it. There are other forms of ABA, if we think of it in the sort of broadest sense of the term, that are less expensive, less intensive, can be delivered in a more naturalistic setting and which are very effective for those children. There are some children who will not respond to any form of intensive behavioural intervention no matter how much you give them for how long a period. They need another form of intervention, and they deserve the right to have that intervention. The key is that we have to match the type of intervention to the type of child."

Dr. Eric Fombonne: ..."there are techniques that can be very harmful to the child. Children have died from correction therapy based on the notion that mercury poisoning is causing autism, which is completely untrue. Therefore, we need to provide evidence-based information to Canadian families in order to inform them of what works and what does not...."one approach has been the TEAACH method [showing slide]. This is a patient of mine who is nonverbal, Jacob, but he has been using these pictograms so he can communicate. He does not have any words but he communicates in his family using these pictures. This has been around for many years. The evidence for the efficacy for this method has not been as good as we like, but we have techniques like this that work....What are the factors that will explain the response of a child to a particular treatment approach? ...There are different approaches which may work for some children; others work better for other children. However, we do not know that much yet. [bold mine]

8. Agree that we "learn to do by doing," meaning, that you won't know how to accept an autistic child into the classroom until you bring him/her in. We don't have to wait to accept people with evidence;

9. Agree that there are many ways to teach an autistic person;

10. Agree not to use CURE in reference to autism. Agree to invest in Understanding and Accomodating Autism, and indeed celebrating the lives of autistic people as a means to humanizing instead of dehumanizing people; (we cannot use the word CURE for many reasons: first being that many autistic people are taking offense and the idea of a CURE does not lead to Acceptance of people. It connotes aberration. Second, like Cerebral Palsy and Deafness as only two examples, autism may not likely "curable.") Look up the history the history of "behavioural treatments" used to "cure" cerebral palsy, which we understand today to be uncurable. Use history as a guide to how we regard people and use our powerful language to support people while we continue to study to understand autism;

11. Change the name of the "Combating Autism" act to "Understanding Autism" act and the language therein;

12. Agree that all parents handle disability differently and that parents require more support as we continue to understand autism;

13. Agree that "being different" is as unique as being human.

I invite more people to add to this list. I intend to make it longer and more detailed. If you want to contribute via your blogs, it might just be a positive step into appropriate representations of autism, and might also be worthy of a press release.

Finally, I want to share a anecdote with you. I was watching the news for a brief ten minutes last night, and there was a commercial, I wasn't paying attention for what, with kids playing karate. In that commercial, there were a number of children kicking and doing their "karate chops," and the camera flashed to a girl with Down's Syndrome. I didn't notice it in the beginning. She was just there with the other kids and I truly didn't think anything of it until about two minutes after the commercial. I thought to myself, "I didn't even notice that she was different," but the moment I realized how unremarkable it was, how she truly belonged in those scenes I thought that this is the place where we all need to be. When we realize that disability is not such a big deal, and that providing accomodations is much easier than we think, we will be a lot further ahead. We only just yap much too long about it that it SEEMS big.