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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  

Thursday, June 26, 2008


Laughter at the Airport

I am sitting in the San Diego airport waiting to go home and see my family that I miss. As I take a look at what happened over the past week, I stumble over San Diego Fox News, where I burst out laughing at what I see -- photo of me in my worst possible state after major surgery in the hospital with Adam this past May.

I can't wait to tell you more when I return home about the fabulous Autism Hub bloggers I met down here and the wonderful folks in San Diego.

At least I'm laughing and happy. I caught my cancer early, I will survive, I made it to the conference, and I have a happy and healthy son.

Ah, the laughter... the joy.

Wednesday, June 25, 2008


San Diego

I'm in San Diego -- the Work With Me, Not On Me -- and I must say that I'm really enjoying meeting many other Autism Hub Bloggers here: Autism Diva, Asperger Square 8, One Dad's Opinion and Dad of Cameron.

We've all been busy presenting, and Steve and Bev have been on the radio which you can here hear by clicking on this link.

Today, Adam graduated Senior Kindergarten (Pomp and Circumstance and all), and my family has been sending me so many photos. I hated to miss it, but while I'm here, I know I'm also speaking for Adam's future. I delivered my Mismeasure of Autism: The Current Basis of Autism "Advocacy"presentation which is being published this July in Wendy Lawson's Concepts of Normalcy: The Autistic And Typical Spectrum. The audience has been really interested, asking great questions and I must say that the reception at the autism conferences lately has been very refreshing.

In the meantime, Adam and I are sending SMS messages to each other. As he doesn't like the phone, we've found a new way to communicate. We found yet another way to adapt.

Friday, June 20, 2008


He Did It!

"We Jews, we dance," said Elie Wiesel in a speech he gave in Toronto just over a year ago now. I had the honour and privilege of meeting him in person. He was talking about how exactly BECAUSE of tough times, is reason to celebrate good ones. This is a philosophy I don't take for granted. Adam has just graduated from Senior Kindergarten and will be going into Grade One in September.

"It has been a tremendous joy to work with Adam this term, and to be a part of his progress. Adam has exploded into independence...the greatest achievements Adam has seen in language this term have been in the area of self-expression. The work he is doing in and out of the classroom with his device has built his confidence and allowed him a very important and impactful release," says his report card. Adam goes to an inclusive school -- not special ed, not an autism school, not a contained classroom or a partially integrated setting. Adam is also "classically" autistic.

The tough times for us seem to have been society's view of Adam, and schools adopting that exclusive, medical perspective of autism. Adam's challenges came from early pre-schools that didn't understand him and thought he had to develop just like other children. That was frustrating and emotionally debilitating for us all. Yet, we kept seeking loftier goals. We never believed in "NORMAL," and resisted many temptations to work "on" Adam to make him such. It never would have happened anyway. When we tried (in our early intervention days), Adam cried a lot.

In his book Enforcing Normalcy, Lennard Davis said, "before the early-to-mid nineteenth-century, Western society lacked a concept of normalcy. Indeed the word normal appeared in English only about 150 years ago, and in French fifty years before that. Before the rise of the concept of normalcy, there appears not to have been a concept of the normal; instead the regnant paradigm was once revolving around the word ideal. If people have a concept of the ideal, then all human beings fall far below that standard and so exist in varying degrees of imperfection. The key point is that in a culture of the ideal, physical imperfections are seen as not as absolute but part of a descending continuum from top to bottom. No one, for example, can have an ideal body, and therefore no one has to have an ideal body..." (pp. 100-101)

And so, we dance, we celebrate Adam's being, his achievements. We congratulate everyone who has assisted us in enabling him and his own personal success. I cannot imagine the world without Adam as he is. Our world has oversimplified the state of being human and to support this, I would like to direct you now to listen to Harriet McBryde Johnson who talks about disability and the notion of "the cure." Harriet McBryde Johnson brought a disability rights perspective to bear on issues raised by the Museum's Deadly Medicine exhibition. This podcast comes from United States Memorial Holocaust Museum.


Brueggemann, Brenda Jo, Garland-Thompsan, Rosemarie, Snyder, Sharon L., Disability Studies, Enabling the Humanities, New York: The Modern Language Association of America, 2002.

Tuesday, June 17, 2008


Proud Mom

School is almost over and camp is soon to begin. In closing the school year, Adam did a timeline of his life which you can view on Adam's own blog here.

I am swelling with pride for all the hard work he has done and I am that he's had a wonderful year at a truly inclusive school. Every day Adam always looked forward to seeing his friends there and started initiating "peer interaction." (I don't like using over-used terms, as they come to reflect what is otherwise known as "appropriate peer interaction" as opposed to simply peer interaction that may appear atypical -- or of peer interest that may appear atypical to onlookers).

I also verified this year that Adam's verbal communication cannot reflect what he thinks and how sophisticated he is. For instance, if I have a family albumn, he may say "dog" for daddy, deferring to an easier "d" word he knows. However, if he labels them with the written form, he can match names to his family members easily.

It's just an important point I want to make. Speech is not always as reliable as text.

Friday, June 13, 2008


What Can We Learn From "Jerry's Kids?"

What can we learn from Jerry's Kids? A lot, I'd say. How often do we hear relentlessly over and over and over again that so-called "high functioning" people do not have a right to talk for all autistic people as if they are "taking away services" rather than adding to better the quality of life for everyone?

Here are some myths that need dispelling yet again:

1. A non verbal person can often read. These are people often called "low-functioning," but they can often learn to communicate via augmentative communication methods. Very often, these possibilities are not tapped because behavioural interventions are sought first -- the typical response is sought instead of enabling the autistic response;

2. Some parents call their children low functioning when they are higher functioning than my son Adam. I've heard parents in the beginning of our journey who said they would "institutionalize" their child who could talk more than Adam could. Some call their children non verbal even though they speak fluently, because they may have trouble with following directions. This is mis-labeling, so we cannot trust the use of labels used by many advocates;

3. We should not assume that "richer" people have more access to services and therefore can "cure" their children easier. Yes, one can hire private shadow support, and other therapies, but do not assume that a person who has more resources does not want to advocate for full inclusion and support of autistic people, and make this accessible as a right for all. At the same time, "richer" people have also wasted a lot of money on "therapies" that have not enabled their children to the fullest extent;

4. Biomed autism advocates like Jenny McCarthy's TACA group need and use "higher-functioning" autistic people in their statistics to try to prove there is an "epidemic" on the one hand, while stating on the other that they are not "severe" enough to speak for autistic people.

Okay, I could go on with the hypocricies, but it's better to show than to tell. Visit the website, for a little history lesson on "Jerry's Kids." Watch how some disability rights advocates are blamed. Sound familiar to autism???

The movie trailer can be watched here. When you watch it, you'll understand why I don't walk for Autism Speaks.

Tuesday, June 10, 2008


Inequaltiy, Discrimination and the Medical Model of Disability

Some Reflections After Viewing Diane Sawyer on Social Justice and Autism

Despite all of our efforts (and it is quite an uphill climb), reporters don't listen to autistic people. I am continually surprised that an African-American woman reporter, who might remember a time when the Black Civil Rights Movement was considered extreme, would call autistic people "ill" even though she interviewed them. I was equally surprised when Diane Sawyer of ABC, asked rhetorically, "isn't it [acceptance] a beautiful way of expressing heartbreak?"

Well, no. I can't say that I am heartbroken in the least as a mother of a truly, classically autistic child -- a child who struggles with sensory issues and anxiety, but who is otherwise fully capable of learning. If I were heartbroken, our lives would truly be miserable, wouldn't it? I mean, what part do we parents play in feeding into stereotypes and how must we become so hypersensitive to these stereotypes so that we can give our children better opportunities than they have today?

What part does the medical profession play in pathologizing disability to such an extent that we are faced with the challenge of making real systemic change -- because our systems are based in the medical model, not the social model of disability? In other words, when will the public begin to listen to autistic people and not cast them aside as a minority group in this present environment of heavy oppression that weighs upon autistics, and on my mind, like the thick humid air of a Toronto summer?

ABC may be hearing, but it ain't listening. That kind of report that I saw in the clip was akin to saying that well, "you're really don't want to be White? We just can't understand why you wouldn't want to be White! You must feel terrible. You must be suffering because you are Black and not like us." Sigh. I guess they just find it so terribly hard to believe, intrinsic in those who like to admire their image in the crystal-clear water.

I have been interviewed lately (to be announced) and I am struck by the repetition of the questions regarding "the cure," and the relative comparison to the severity of disability and challenge, which tells me that there is a conceptual gap that hasn't yet been filled. In large part, the public can't get there so long as the medical model of disability reigns supreme and the social model is ignored, or is falsely perceived to be lead by a small band of "extreme" disability activists, or people who are, as Thomas Insel called us, "a nuisance." I mean come on! There are eighty million disabled people in North America, and our scientific discoveries, while making us live longer, will likely have many of us becoming disabled in our lifetimes.

In an era when an African American man has finally received an opportunity to become President of the United States, we really should all be shocked that justice for the disabled remains elusive; that in the wake of acceptance of diversity as an overall ideaology, 'neurodiversity' is scoffed at and ignored as trite; or that our educational systems remain as segregated today as were water fountains, schools and buses were for the "Negroes" or "Colored People."

No, today we live in a world where paradox reigns supreme, where everyone is a unique hypocrite, and where no one really listens to each other to really SEE that we do all want pretty much the same things in this life. However, equality does not mean that we keep paying the gatekeepers.

No one wants to be isolated, and yet, autistic people are some of the most isolated individuals today. Not because they do NOT want to be social, but rather, because "this isolation is indicative of existing social barriers experienced by adults with autism. Kudlick traces some of the different definitions of autism throughout the medical history. In the end, this article "casts disability as not just another 'Other,' it reveals and constructs notions of citizenship, human difference, social values, sexuality and the complex relationship between biological and social worlds." (Kudlick, 2001.) The idea that disabled people are viewed as different alone, can further emphasize inequality and segregation and discrimination that goes against social justice.

There might be no greater paradox than the public school system itself. Schools are a major social system of society. If there were any just policy shift, there would be no barriers to inclusion. Jenkinson argues that, "inclusive education is founded on the premise that all children, regardless of disability, are capable of learning and should be given the same opportunities to achieve, through learning, to the best of their ability." (Jenkinson, 1997) UNESCO, which the Ontario Board of Education is attending to, in the Salamanca Statement, says "regular schools with this inclusive orientation are the most effective means of combating discriminatory attitudes, creating welcoming communities, building an inclusive society and achieving education for all." (UNESCO, 1994). Yet, the IEP, and the IPRC process here in Ontario, (The Identification, Placement and Review Committee Process for Students with Autism), leaves much to be desired in the process to such equality and inclusion. Instead, children are placed in contained classrooms or are partially integrated. The entire process is solely based on the medical model of disability, as parents wait and rely on prejudiced therapists and clinicians who maintain these barriers. Let us not forget to mention as I have numerous times, that NO policy board on autism in our school system has ONE autistic person on it. These are the barriers that inclusion would do without. Teachers would not graduate teacher's college without knowing how to accommodate and include every student. Policy committees on inclusion or autism would not proceed without many autistic voices on them.

"Dempsey and Foreman examine five types of educational therapies available to autistic students. They conclude that early and intensive educational support is the best method to treat autistic students. Once these treatments are successful, it is surmised that students can then follow a regular curriculum. Essentially, Dempsey and Foreman describe a deficit-based approach which places the problem with the individual. This follows the medical model of disability." (Sandra Broekhof in her thesis to York University: What's In It For Us?: A Social Justice Approach to Educational Services For Students With Autism.)

Sandra investigated the Ontario Ministry of Education to conclude, "it is clear that policy is based on the medical model of disability. As noted earlier, the policies have set up certain barriers that do not allow students with autism to be fully included members of the classroom or society. Policy leads to a certain way of viewing and dealing with learners with autism, as well as other learners." (p.16)

Hodge, of on Reflections on diagnosing autism spectrum disorders, an article in Disability and Society, says "he became increasingly uncomfortable with the extent to which giving diagnostic labels reinforces a system of provision that is about the potency of professionals and the impotency of parents in the lives of vulnerable children." (2005) Might I add, in the lives of autistic children and adults too? This over-reliance on the DSM IV-R is present in every aspect of education policy to the way society views autistic and other individuals with many aspects of human variance or atypicality.

The paradox continues: "Inclusive education is more than a method or a strategy; it is a way of life that is tied directly to the belief system that values diversity. Inclusive education is also a philosophical and practical educational approach which strives to respond to individual needs, and is intended to ensure equal access for all students to educational programs offered in regular classroom settings." (A Directive and Guidelines on Special Needs Education in the Northwest Territories). We often hear in our province that "everyone learns differently," and we are taught to respect that and make room for that. It sounds pretty nice. The Special Education Model, says Sandra Broekhof, "utilizes a philosophy that students with disabilities learn differently. In terms of students with autism, some of the services include music therapy and Intensive Behaviour Interventions. By utilizing the specific services available, the students can hope to be cured and can eventually enter the classroom. As well as using specific services, very often students with disabilities use a different curriculum than their peers. In this sense there is more segregation because the students learn different things. The assumption behind the Special Education Model is 'that every individual is unique but the services are not unique.' By focusing on services, and not individual needs, students with autism are classified and individual needs are not being met." (p.10) [bold mine]. This is the reason I do not support the ABA/IBI lobby in Ontario or in Canada. There is no one-size-fits-all therapy for any autistic person, and it should not be mandated that our children follow it.

"In order for individual Boards of Education to shift to a social justice educational model, there needs to be a shift in educational policies towards inclusion." (Broekhof) And yet, there are barriers. Ainscow and Cesar argue against the special education system as reflecting "assumptions, values and power relations." (2006). All of the services for autistic children and adults are aimed at curing and fixing. It is not until the child is fixed that they are accepted and/or allowed into mainstream settings. Consider as well, the autistic adult, who after the age of twenty-one, is presumed to have learned all they can, and are placed into group homes where the learning discontinues, and "quality of life" only goes as far as daily feeding and care. "People with autism are denied primacy and even agency." (Waltz, 2005) I know quite a few autistic adults now, and I can say that the learning never ends, the contributions to humankind, immense.

I am drifting further and further away from centres that seek to support all kinds of people with disabilities based on inequitable treatment. Instead of clinician-client relations, we need a system of support where self-determination is a given, where this responsibility and agency is taken for granted. I recently attended an event for a centre here in Toronto that sought funds to support it. Still, kids and adults are segregated and I was struck how the video's testimonials were only of the parents, not of one disabled person who used the services of the centre. Not even one on the stage! The MC kept calling users of the centre, "clients," but who is the client, really? They are not always the people going there. They are, once again, the parents.

In my view as a parent, I feel it would have been fine to interview me, but not without my son in the foreground. I feel that Adam always has to be with me when I talk about autism. This will be his fight, you see. He will have to face the same asinine questions about why he doesn't want to be cured and how his case as never as severe as the next person's. Adam can clearly write now that he wants to be able to talk, but I do not believe that he would want to change the person he is. Could anyone guarantee that a cure would not take away one's essence, one's way of being in the world, having been like that from the time of birth? Does he feel that he's really missing a piece of himself, or is it society that makes him feel that way -- or will attempt to? I do not believe a blind person feels they are missing a part, or really feel envious of sighted people when they have never experienced sight! In contrast, I am sometimes envious of the voluptuous senses that the brain cultivates in the absence of the proverbial five.

We parents still have a big role to play. My role as I see it is to include Adam, to advocate for him and get him what he needs while also teaching him that has to advocate for himself. Yet, I think we can be doing more as parents by moving towards options for families. More aides and shadows, and a move towards real inclusion as opposed to integration which takes the kids OUT of the regular setting and away from their peers. I would tutor Adam on our own time, but I wouldn't want him to miss out on any aspect of school, or have a special curriculum made up just for him. Other parents do need some respite time and that should be part of our community aide system. Adam enjoys the curriculum at his school and requires a means of responding in a manner that he can so he is enabled to participate. Special education, while it sounds good and may be peppered with the lovely language of "inclusion" and "acceptance," is still segregated and exclusive. It is the paradox of special ed and many of our centres and programs for the disabled today. They are still based in the medical model of disability which pathologizes autistic people, rather than views autism as an atypicality of humanity. Thus, we must consider putting more emphasis on environments and social structures as the real disabling and hurtful aspects of disability itself. We can no longer disguise insufficient services, systems and therapies with the language of acceptance. Acceptance is what acceptance does.

But out-dated, preconceived, tragic views of autism reign. Biomedical intervenors prey on frightened, ill-informed parents (see footnote) and a fearful public by using the medical model while ignoring the social model completely... and Diane Sawyer thinks I'm heartbroken.

I'm not heartbroken. I lovingly accept and celebrate Adam and all that makes him, him. I want for him a better world, and it is the autistic and other disabled adults who are paving the way.

My Footnote:

I said "ill-informed parents." In many respects, all of us are ill-informed. Many of us are over-informed which doesn't mean we are right, or something (like biomed) is scientifically proven to be effective for all autistic individuals, but rather, may be specific to the individual, whether they are autistic or not. Thus, over-informed may be akin to falsly informed -- information that is profuse but nonetheless false or not yet proven to be true. However, when I wrote "ill-informed," initially, I was referring to frightened, new parents to autism who are usually given access to biomedical interventions and behavioural interventions first, all based in the medical model of disability. I was once such a parent and admit to being a parent on a journey to learning, but committed to social justice for Adam and people like him.

Special Thanks:

Special Thanks to M. Sandra Broekhof for giving me her paper, What's In It For Us: A Social Justice Approach to Autism. M.A. Thesis, Critical Disability Studies, York University, 2008.

Other Sources Cited:

Ainscow, M. & Cesar, C. (2006). Inclusive education ten years after Salamanca: Setting the agenda. European Journal of Psychology of Education, 21 (3) 231-238.

Dempsey, I. & Foreman, P. (2001). A review of educational approaches for individuals with autism. International Journal of Disability, Development and Education, 48 (1), 103-116.

Hodge, N. (2005). Reflections on diagnosing autism spectrum disorders. Disability and Society 20 (3), 345-349

Jenkinson, J.C. (1997). Mainstreaming or educating students with disabilities. Routledge, Toronto.

Kudlick, C.J. (2003). Disability History: Why we need another "other." The American Historical Review, 108(3), 1-28.

UNESCO (1994) The Salamanca Statement and Framework for Action on Special Needs Education. UNESCO

Waltz, M. (2005) Reading case studies of people with autistic spectrum disorders: A cultural studies approach to issues of disability representations. Disability and Society, 20(4), 421-435