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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

Friday, June 08, 2007


On Schools And Services

Joey's Mom inspired this post today.

Here is an article that denies services to a person with High Functioning Autism.

Mary Ann Chambers, MPP of Ministry of Children and Youth Services was on CBC Radio when she announced additional funding for ABA and other services. She said that ABA "was more for the lower functioning autistics." I went on air after her but didn't get a chance to say this.

Who is low functioning? Who gets to decide who must be "treated" with a government endorsed therapy? While I understand that there is some effort into providing more multi-faceted supports beyond the ABA model, and that yes, I don't mind if people personally decide that ABA is something they want to do (as the ABA today is a mix of various therapies in most cases and is no longer purely ABA and thus should be called by a different name), I do have a problem with the government telling autistic people how they SHOULD be treated. Knowing the history of "treatment" of people with cognitive disabilities, we must address the issues with such "treatments" as it has affected autistic people themselves. Michael Moon, one of TAAProject's board members, recounts the "treatments" attempted on him when he was young and non verbal and how he describes very autistic, despite his ability to articulate today.

We are learning that designations of HFA and LFA are not accurate enough, do not describe autism sufficiently. Amanda Baggs, a "low functioning" autistic woman knows how to communicate using a keyboard. This whole dialogue we are hearing over and over again, so old and out-dated, that individuals with less ability to function are not intelligent, are not aware, is really getting tiresome. An inaccurate understanding of autism leads to maltreatment and a bad education using the model I describe often here. Here is what the University of Montreal has to say about so-called "low functioning autism."

"There are no available convincing data that autism with vs. without overt peaks of ability, with vs. without overt speech, or overall autism vs. Asperger syndrome, differs at a genetic level. Even language abilities cannot be used to distinguish autism from Asperger syndrome, as written language experts are as representative of autism as oral language experts are representative of Asperger's." — Laurent Mottron et al.

We are beginning to understand that high and low functioning does not have a bearing on intelligence. HFA or LFA also has little bearing on functioning too. Adam cannot talk well. This doesn't have any bearing on his abilities. Some people's autism is more of a challenge for them to "function" every day -- sensory issues, anxiety. But autistic people, as I have come to understand it thus far, are no different than anyone except that there are additional challenges, some more extraordinary than others. Those challenges vary from person to person and oftentimes there are co-morbidity issues. We do not belittle those challenges, but consider how we can accomodate them and provide access.

What is exceptionally dangerous is that parents are using this "low functioning" term to justify ABA services to "lower functioning" autistic children, while the rest of autistic children get left behind. In other words, we get more myth building in order to get the money and services without really addressing the real issues. While some people believe that getting something is better than getting nothing, I caution against this thinking as what arises is misunderstandings about what autism is, incomplete and often inhumane ways of "treating" autism, a very poor quality of service, and discrimination and dehumanization of autistic people

Adam can function in a "regular classroom" (his classroom is genteel) with support (and I uphold that almost every child can if the attitude of inclusion exists -- it does not mean throwing a disabled kid into an inhospitable environment. It means that the environment can and must be modified). So, if only a person now with a LFA dx gets attention, does this mean that Adam does not qualify for any one-to-one education, or legislation that entitles him to a family-appointed shadow in an inclusive classroom (I believe that the family has a right to appoint someone they trust instead of being assigned an Educational Assistant who works on behalf of the school board. I say this because Adam's shadows are my eyes and ears. As he cannot tell me if he's being maltreated or bullied, it is important to me to hear from someone I trust).

Does this stratification of competence mean that teachers get to sit on their laurels and blame Adam and other children for not being like the other kids because they don't have to DO anything? I fear that prescriptions for medications are going up in primary school students because the onus is always on the child to act accordingly and to fit into the school's model or structure, without ever really delving deeper into the child him or herself (how can they, their classrooms are WAY too big!) So long as you do your work, show up on time, follow the rules, you will be okay. School, the more I think of it, has little to do with the acquisition and love of knowledge, it is more about discipline and preparation for employment -- yet another structure we must learn to work within. Of course, there are always the teachers we remember who surpass the system to actually instill this love of learning, or who made us feel good about ourselves again. Dawn Prince Hughes describes school as the beginning of when all the walls went up. Everyone in her home, she recounts, was pretty much the same. In the telling of her story at a conference in Toronto recently, she tells us of how her quirks were accepted and supported. When she got to school, everything changed. More walls went up, she said. Eventually, she dropped out when she was sixteen. She became homeless. And of course, for those who know her story, she bonded with the Silverbacks and became a professor of primate anthropology. So, how much do we also have to reconsider the school system as an effective teaching mechanism? How many kids fall through the cracks? When I saw Amanda Baggs in Boston, someone asked her about school. She recounted all the schools she attended -- a long list -- and finally said, "but I didn't learn anything." I know my parents had to get me out of the public system or I would have been one of them.

So the Toronto District School Board, despite the issues I have raised which are overwhelmingly problematic, must include autistic people on the autism reference committee. It currently does not. We need autistic adults testifying about autism regarding the Senate Committee Report. We need autistic adults to state the kinds of help that would actually benefit them. It benefits us to understand their child hood experiences so we can set up the environments properly. Does it take our effort? Of course it does.

And why should we do it? Because we have kids with all kinds of learning and sensory issues who do not have autism too. I am troubled at seeing kids who need extra help, not get any because they do not have the diagnosis du jour.


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11:19 AM  
Anonymous -Brian- said...

Quoting Estée:

"School, the more I think of it, has little to do with the acquisition and love of knowledge, it is more about discipline and preparation for employment -- yet another structure we must learn to work within."

That was the message that I got in college, before I (or anyone in my family) was aware of me being autistic.

I was told in the third semester of a course that we had to divide into teams, and that we had to do our own "ad-hoc" work when it came to the operating of each team. When I tried to tell one instructor that I was not able to understand the operations of a "team" in this manner, and wanted to work on my own, he asked me: "Are you trying to weasel your way out of an important part of this course? Employers are the ones hiring graduates from this course, and they demand employees with strong team spirit. If that's the way you feel, you do not belong in this course, at all!"

That was just one step along the road to suspension. Even today, some claim that I should have taken the college to court in a lawsuite, but what judge would not classify me as being "below par" when it comes to my rights? Even lawyers I spoke to would only say that my chances were "slim, at least" in winning such a case.

When a person, such as myself, wants an education for knowledge and creativity, is there anyplace to go to that does not demand that the student "prepare for the workplace" as one of the biggest requirements for graduation?

Even at the college level, autistics are needed, not just on the student councils, but also, on the college advisory boards, and as advisors to the various teachers' federations, as well.

11:30 AM  
Blogger VAB said...

Your whole post rocked, but this I particularly agreed with:
"I fear that prescriptions for medications are going up in primary school students because the onus is always on the child to act accordingly and to fit into the school's model or structure, without ever really delving deeper into the child him or herself (how can they, their classrooms are WAY too big!)"

What is more, if you use medication or whatever to modify the child, rather than modifying the class, it allows classes to evolve into forms that are ever less suitable to an ever larger number of kids. If you accept that kids are the way that they are (and I mean the whole diverse population) and adapt the class to the kids, things will work out much better in the long run, for everyone.

11:56 AM  
Blogger Club 166 said...

It seems to me that autistics (at least in my neck of the woods) get put into one of three boxes:

1)"Low Functioning"-We'll give you an aide, and put you into "day care", where we won't really expend any effort to keep you up to speed.

2)"High Functioning"-Why are you asking for any support? Get with the program, if you can talk then any "misbehavior" is totally willful. Medicate them if necessary,

3)"Either of the above with behaviors"-we'll throw you in the emotionally disturbed/oppositional defiant disorder group. We'll either put you into a segregated class where no one really teaches, or get your butt booted out for disciplinary reasons.

Now, proud parent, which box did you want us to put your child in?

8:09 PM  
Blogger bigwhitehat said...

I get what you are saying but I can't afford to depend on anybody to give my boy a thing. As a dad, it is incumbent on me to make things happen. All we get from the school is gravy.

9:56 PM  
Blogger farmwifetwo said...

I would go on forever. So maybe I should do it this way instead. As I said in one of these posts.. as long as my kid can pick his nose and sit quietly... bye bye EA... and guess what's happening next year.

The first one is the Liberal gov'ts memorandum on ABA. And my opinion on it.

I also sent an email to on the subject per my PDD Teacher. It was the last day for the MACSE consumer feedback forms. Pretty much cut and pasted the above post.

TVDSB.... read the 2nd post... Luckily so far the eldest will be fine. Thank goodness for ME purchasing outside services and tutoring for him... but my little one.. is going to get SCREWED.

I'm NOT happy.


6:47 AM  
Blogger Sam I Am said...

Excellent post Estee.

1:41 PM  

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