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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

Tuesday, December 12, 2006


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.


Blogger Lisa/Jedi said...

I like this effort very much, Estee. I would add that it would be a good idea to refrain from labelling autistic people based on their "functioning" levels, because these can be very misleading & can pigeonhole people who tend to have varying abilities into too narrow a designation to be useful or respecful.

9:57 AM  
Blogger Autism Reality NB said...

I recommend you spend less time worrying about the impact of labels and make more of an effort to improve services available for autistic children and adults. There has to be some labelling available to distinguish between the needs of autistic persons who write essays and appear before courts and government committees and those who can not communicate with ordinary language, hurt themselves regularly, do not understand the dangers of everyday life and reside in institutions being cared for by others. They are indeed low functioning. If you can come up with a better more sensitive term please provide it.

2:56 PM  
Blogger Alyric said...

Agree with Lisa here. The quote from Laura Tisoncil sums it up beautifully:

"the difference between high-functioning and low-functioning is that high-functioning means your deficits are ignored, and low-functioning means your assets are ignored". – Laura Tisoncik

4:56 PM  
Blogger Estee Klar-Wolfond said...

Autism "Reality":

First, this post is inteaded to cooperate to find a common language so that ALL our children get the services and education that they require. The reality may be that some people have difficult behavioural issues and yes, as a parent you have to figure that out and you deserve to be supported. As a parent, I also contiunally evaluate myself in how I treat and relate to Adam. I always question my perceptions, my "beliefs," my expectations. They have a role to play in a lot of this.

However, this is not a zero-sum game that you seem to keep making. Further, there are many people who do not "speak" who communicate, and you seem to keep excluding them. As much as you want to use them in your "ever-rising" 1:166 autism numbers on the one hand, you love to "dis" them on the other as non-autistic. So let's get "real" about it. This post is intended to cooperate, not, as you exemplify yet again, create divides.

As many suggest, there are those who do not benefit fromthe services you advocate for, but benefit from a mix of approaches. Are you intending to exclude this huge amount of people in your argument for autism service?

Our society has a duty to accomodate all children. People are hesitant when they hear horror stories which make them fearful, or as I hear often from therapists, OT's and teachers, "I don't want to teach autistic kids because I don't see any reward in it." Why? I feel strongly it is the platform upon which ABA services have been demanded. I am not entirely against ABA -- now that Adam is older, a vareity of approaches seem to be working, but then, who can really tell as he is a non-verbal child who is quite intelligent.

First and foremost all children deserve to be educated and accomodated and assisted when required. I can tell you by Adam, that "approaches" have already varied for him, as one may always need one or another at a certain point in time.

Further, no one is attempting to label anyone here, except perhaps yourself. I believe Lisa/Jedi is simply noting the true fact that many so-called "low functioning" people are intelligent. Therefore, this spectrum idea has no real basis as far as intelligence goes.

This continuous lack of understanding is something that we all must work on. It is something that we must continue to talk about and explore in the science.

In the meantime, as I stated, acceptance can move on, without evidence. Autistic people deserve the same treatment as you would want for yourself: accomodation, assistance, celebration, respect, and anything that can support one's dignity and Personhood.

How can all parents participate in an agreement about the opportunities we want for all our children?

At the moment, I find it terribly difficult to get Adam into a school. I believe strongly that negative perceptions about autism have a lot to do with that as many other parents I know struggle in finding a suitable and accepting placement where our children will continue to thrive and progess.

Finally, another point I wish to add to the list:

"Let no person call another person "a burden on society."

5:12 PM  
Blogger Estee Klar-Wolfond said...

I also want to verify, for Adam's sake what I mean by "non verbal." I get a lot of parents really upset that their children are non verbal.

Adam can communicate. He has tons of intentional communication and is using picture cards. On the computer, he can show me what he knows which is far beyond his ability to express in words. Although he doesn't speak in sentences at this point in time, he has lots of utterances and is beginning to use words, albeit inconsistently and if so, often quietly. Lots of his language is prompted and it comes easier with visual support (written words as he is hyperlexic, or pictures). So, I prefer to call him quasi-verbal, actually, but technically, I can't say that he is fully verbal at this point in time either. So perhaps some parents might call their children non verbal in the same circumstances, and some might not.

Nevertheless, he is a bright young little guy with tons of vigour and motivation to learn. I believe we were in part responsible for cultivating that motivation with positive approaches and by putting our faith in him and ourselves. I believe the will is in us all.

For his sake, I prefer to represent him in the way he deserves -- not overblowing the disabiltiy, and not understating it either.

6:34 PM  
Blogger Lisa/Jedi said...

Personally, my concern with the labelling issue is that my son, who has Aspergers, falls on the so-called "high-functioning" end of the spectrum. He is, if anything, hyper-verbal, bright, creative, funny... he also has a great deal of difficulty with every day functioning because of OCD & Tourettes, which we see as a part of his autism spectrum qualities. We are fortunate to have him in a private school that appreciates his abilities & works with us to accomodate his difficulties, but this is likely the only school in our area that could cope with his behavioural issues. To generically apply a "high-functioning" label to my son because of his verbal ability is just as oppressive, in my opinion, as applying "low-functioning" to someone who is non-verbal because it simply does not accurately describe or respect his uniqueness or his needs.

9:29 PM  
Blogger Zilari said...

As someone who has been identified as "high functioning" at several points in my life, and quite a bit less "functioning" at several other points, I can attest to the fact that these kinds of labels are troublesome in various ways. If I'm getting overloaded in the presence of other people, for instance, and I need to communicate to someone that I'm autistic, I really don't find it helpful to have to deal with people's questions as to whether I'm "high functioning" or not. The public concept of autism seems to be divided something like this:

1. High functioning people, who can speak and write and work but who are somewhat socially awkward.

2. Low functioning people, who are wholly or mostly nonverbal, who need a lot of one-on-one assistance, etc.

It just isn't that simple, and those designations leave out those of us who can write and who are at least moderately verbal, and who can work when properly accomodated, but who also might be subject to serious overload issues in various environments, and who might have executive-functioning issues that mean we need help with things many people might consider "basic" (even while not necessarily needing help with other things that might be considered more complex -- there do exist autistic graduate students who cannot cook or drive, for instance).

The idea that some people need to be identified as "low functioning" so that they can receive acceptable services still ignores the individual -- even if two people seem to, superficially, have a similar skill profile, they might actually need entirely different kinds of accomodations.

The labeling thing in this regard is simply a convenience for those in the position to size up what a person supposedly "needs" or what would benefit them from the most. Ideally, I would like to see individually-based services -- those based on what a person actually needs the most help with, regardless of what's written down on a piece of paper (usually as a result of testing of some kind -- anyone who thinks you can divide autistics into high and low-functioning groups based on ANY test is seriously missing some information).

Reality is a lot more complex than many people think -- and to say that we NEED to pigeonhole autistics into particular label-boxes because otherwise some people might not get the right kinds of help is just defeatist. Why not work on coming up with better ways of assessing people's living and educational needs, based on individual criteria? I've seen far, far too many examples of parents and children being discriminated against (particularly with regard to educational services) based on the child's supposed "functioning level" -- clearly, the existing classification schema isn't working. It needs to change.

I think that it's safe to say that autistics exist, as fuzzy as the actual definitions of "autism" might be, but once it has been established that someone is autistic it makes much more sense to address them as an autistic individual.

10:55 PM  
Blogger Estee Klar-Wolfond said...

Thanks, Zilari` Your comment sums it up very well and I agree that we need Individualized Support, when required.

8:25 AM  
Anonymous Anonymous said...

There is one goal to which all parents of autistic children could join forces. Autistic children should be allowed into schools with shadows. If this could be attained, it would change the direction and attitudes of society.


9:46 AM  
Blogger Autism Reality NB said...

You still have not provided any subsitute terminology to replace the labels which you find offensive. My son is low functioning. I do not find it offensive to describe him that way. It is simply a statement of fact.

I have worked very hard to help him learn to communicate and the results have been very good. I did not worry about labels though. Conor has learned through ABA interventions. I find great joy in my son not in his autism.

You can find a picture of Conor waiting in anticipation for a visit from his ABA therapist at this location:

7:33 AM  
Anonymous kyra said...

high functioning/low functioning--those terms mean nothing. i wish they could be wiped off the board in the autism discussions. autistic individuals. that's what the world is populated with, autistic children, teens, and adults.

of course autistic children must be allowed into schools. it infuriates and saddens me that it is such an issue. there needs to be more funding, more space, more properly educated teachers and aides, more openness in educational approaches. i can see WHY it's hard for people to get up to speed with this. the educational system in our country has never been eager to equip itself to serve the range of kids that enter its doors. they are much more concerned about behavioral management and maintaining 'control' of the classroom. they have long been baffled by how to educate any child then slips even slightly to the edge of the bell curve. it's a TALL order to ask our educators and legislators to open their minds and stretch their dollars and their preconceptions, address their fears (which is where the bias and discrimination comes from) about differences but it is a lofty and CRITICALLY important goal and i applaud you, estee, for creating this list.

let's not say the word CURE but let's allow the possibility that since there is so much about autism that we don't know, creative and effective approaches to the sensory-motor needs and developmental needs of autistic kids MAY alleviate some or much of what makes navigating the typical world hard or painful. and let's allow that to be seen as respectful and not about trying to make autistics into something they're not. the goal is not to turn autistics into NTs. the goal is to allow every autistic child maximum opportunity for realizing their potential. it's what we want for the 'typical' child. why would it be different for the autistic child? at the same time, there is no picture that each child must mirror in order to be deemed successful. the measure of success is highly personaly and individual but i find most professionals pay lip service to this. even in the NT world, there are many parents with kids who don't fall on the spectrum but certainly DO fall outside of the mainstream who've been fighting for the chance to have their child seen as unique, and worth the time and effort needed to educate with regard to his/her wonderful peculiarities.

8:09 AM  
Anonymous Anonymous said...

I can see the points of both sides of the labeling camps.

On the one hand, Autism often manifests itself in "splinters" - both high and low. If one is averaging, then all Autistic people would rest near the middle of the spectrum.

On the other hand, if your local school district is offering a "one size fits all" program, and you believe that it is innapropriate for your child, where will you find your argument? If a program is filled with those at moderate to severe levels, with a ratio of 2 typical to 15 Autistic children, where would your argument for mainstreaming with a one-to-one aid come in?
Indeed, the entire argument of "least restrictive" environment stands of falls on being able to label your child before a judge, and effectively argue correct placement based on need and level of functioning.

2:22 PM  
Blogger Estee Klar-Wolfond said...

The point is that we wouldn't want a school to use a "one size fits all program" for any child with special needs. Inclusion means Individualized Education. Read Dr. Paula Kluth and Dr. Rita Jordan for excellent examples of what this can look like. I think we all know that there are many forms of effective education and environments for different autistic people at different points in their life.

The courts, in my view, will never be able to solve this issue in a "one size fits all" way because every autistic person is different, like it or not. It is a fact and we have to deal with it instead of trying to sweep it under the carpet.

I think we are better off moving forward with a continued list of needs before we look at resources. We have to address an array of needs out there. Further, we can address them by not using autistic people "as disasters that require urgent funding," rather, as autistic people that deserve the kind of individualized education and accomodation that is their basic human right. It seems we are at a point where those of us doing it, acknowledge a variety of approaches that perhaps, for now, can be used as tools for teaching autistic children. However, I would never want a teacher to stop being creative, or stop thinking about my son as a unique individual as opposed to "an autistic person that needs only one approach. I think we can all attest, whether we use ABA therapists or other kinds of therapists, that the power to teach lies in the teacher, not always solely in the methodology.

I highly recommend you read Paula Kluth and Dr. Rita Jordan and Stuart Powell's book: Autism and Learning: A Guide to Good Practice...."At the root of our beliefs about the education of those with autism is the notion that we need to respect the way in which those individuals think and learn. By 'respect' we mean more than the acknowledgement of a right to the kind of respect that is necessary in any human relationship if it is to be truly of the human kind. We use the term here to include a notion of recognition at a psychological level that the world is as it seems to the individual with autism for him/her. We think this holds true in as mush as the way in which the child perceives and reacts to the social and physical worlds in which they live represents a reality for him/her. We may not be able to share autistic ways of understanding but that is our problem as teachers and our starting point for any move towards real learning on the part of our students. There is a natural tension (which professionals need to resolve) between, on the one hand, trying to enable individuals with autism to work effectively and live productively within the non autistic world by improving the effectiveness of their thinking and learning."

We are all trying to figure this out.

4:46 PM  
Blogger ballastexistenz said...

autism reality nb: You say: There has to be some labelling available to distinguish between the needs of autistic persons who write essays and appear before courts and government committees and those who can not communicate with ordinary language, hurt themselves regularly, do not understand the dangers of everyday life and reside in institutions being cared for by others. They are indeed low functioning. If you can come up with a better more sensitive term please provide it.

Why do you feel such a need to distinguish between those as two distinct groups of people?

I find it very telling that on the "high functioning" side you have two traits:

* write essays
* appear before courts and government committees.

On the "low functioning" side you have four things:

* can not communicate with ordinary language
* hurt themselves regularly
* do not understand the dangers of everyday life
* reside in institutions

Only one of those things you list in the "low functioning" side contradicts the "high functioning" side: A person who cannot communicate in ordinary language cannot write essays. (Although they can appear in before courts and government committees.)

The rest, a person can do while still doing all the things you list on the "high functioning" side.

One of them is not even a trait of anything internal to the person at all, it's a trait of how service provision generally works. Living in institutions has nothing to do with how autistic you are, it has to do with what people decide to do with certain kinds of people. As a woman in California put it, "I have found over a long time that the population of people living in state institutions and the population of people living outside them are identical." And that's true.

Additionally, two of the traits you've listed are assumptions about internal states that you have no way of knowing from the outside.

One of those is inability to communicate in ordinary language. There are plenty of autistic people who could communicate in ordinary language, if given access to the right technology, who are written off as "unable" to do so because they aren't given the right kind of technology or the right kind of access to it. Larry Bissonnette, one of the people Estee talks about, is in that category.

Another of those is inability to understand everyday dangers. That's an assumption as to why an autistic person does things that put them in danger. Sometimes the problem isn't inability to understand those dangers, but inability to put whatever understanding we have into practice. For instance, I know perfectly well that cars can kill me, but I'm not going to be thinking about that or able to act on that when I try to follow those interesting straight lines in the middle of the road, or when I go on autopilot and open a car door in the middle of the freeway (both of these have happened, they aren't random examples).

It seems to me that you more want to separate autistics who engage in a particular word-based form of self-advocacy from all other autistics, and you want to do it by bunching together traits that in reality do not bunch together that way. It's not just about offensiveness, it's about inaccurateness. The way you have lumped people together in your above comment just plain isn't accurate.

10:32 AM  
Blogger Artemisia said...

I, too, am dismayed at the fuss about labels - label my son anything you like, as long as you will work with us towards our goals: maximum skill acquisition, maximum participation in our family and community, maximized quality of life.

I have certainly been dismayed as well at teachers and professionals who cling to broad generalizations and neglect to take into consideration the widely varying strengths and deficits of each individual under their care. However, that indicates problems in training and education of the professional, not with labels.

12:10 AM  

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