Why CBS Has Got Autism Wrong

I was forwarded a report on adults with autism on CBS (in the autistic realm, many people prefer to be called autistic adults -- but the preference differs among individuals).

Why does this CBS report have autism pegged all wrong? What does it show in the way society lacks understanding about disability?

I feel like going back a bit in history. In 1987, Reagan on George Bush's recommendation named Evan Kemp Jr. a commissioner to the Equal Employment Opportunity Commission. The US federal C. Boyden Gray, says Joseph Shapiro in his book No Pity: People With Disabilities Forging a New Civil Rights Movement, had opened Bush's eyes -- noting that disabled people were seeking self-empowerment. Gray was not disabled but "he had an instinctive understanding of the fight for self-worth..." Gray was a southerner who attended Harvard, and "he found that his northern classmates automatically assumed he and all Southerners were bigots, rednecks and stupid....'The stereotype was that you spoke with a Southern accent, so you've got to be dumb.' Gray empathized with the desires of disabled people to overcome low expectations and their distaste for being stereotyped...

During the negotiations over Section 504, David Stockman's Office of Management and Budget drafted a new White House position that applied a cost-benefit analysis to proposed disability benefits. To the bean counters at OMB, it seemed sensible. The less a disabled person -- and presumably the more likely that person was to work and live independently -- the more help and rights he or she got. The more disabled someone was, the less he or she was guaranteed. When Kemp [himself a paraplegic] confronted Gray with a leaked copy of the OMB memo, Gray agonized. Kemp, after all, was severely disabled. And Gray knew he could not justify a position that would put a price tag or a cost effectiveness formula on his friend's worth. The proposal was killed." (pp.123-4).

It was perhaps this that lead Gray to understand the meaning of a civil rights bill for people with disabilities. "He [referring to Kemp] reached out to explain the experience of disability, not to scream at me."

"Kemp took the Bush campaign. Three months later, Bush pledged 'I'm going to do whatever it takes to make sure the disabled are included in the mainstream.' Those simple seventeen words, spoken during Bush's image-turning acceptance speech at the Republican National Convention, marked the first time that an American Presidential nominee had acknowledged disabled people as a political force... for several years Bush pollster Robert Teeter presciently had advised his political clients that disabled people and their families were growing into an untapped community...

Later, at the polling firm of Louis Harris and Associates, Louis Genevie, was proving [this] instinct correct. [He] was tracking the voting preferences of disabled voters." They swung markedly to Bush. "Genevie wrote to Bush that disabled voters who had switched to bush had constituted up to one-half of the four million difference of popular votes between Bush and Dukakis. This made up one to three percentage points of bush's seven-point margin of victory....his polling did not even count family members who could be equally strong activists."

"A candidate ignores the issues of disabled people at his own peril," Genevie would later say.

Now let me see, it is said that there are between 40-50 million disabled people in the US today. That is not counting people who become disabled as a result of disease -- many with Parkinsons and Cancer reporting the added stigma in society and the workplace as a result of their diagnosis. If we included that number, Shapiro estimates back in 1991, that that would have accounted for 120 million disabled Americans.

What has happened? Few people are aware of these events, despite their significance for millions of disabled people. Non disabled citizens ignore them. Disabled people, while they have protested on Capitol Hill, cannot do so in large numbers, despite the large numbers of disabled people out there, so it doesn't make headline news. Together, blind, deaf, epileptic, autistic and other disabled people have come together for one cause -- access as a civil right, and to foster a greater understanding and acceptance of disability as an norm of humanity.

So what is wrong with the CBS report? Many things. It perpetuates crisis and fear -- the oncoming "burden" of the many children currently diagnosed with autism.

While it suggests that many adult autistic people CAN contribute to society, it still fosters the fear of autistic people -- their financial burden on the rest of us without viewing their contributions. It sits like a bounty over the heads of autistic individuals.

"To what extent do we have a duty to accommodate?" I often get asked. To me that's like saying to what extent must we allow African Americans into our society? Without speaking to the people where the issues reside, we can never grasp the meaning of exclusion, and will only fear what we have to give up. Of course that fear is often unfounded and based on a false perception.

What is especially traumatic is that despite the headway made in our history by millions of people, Allison Tepper Singer still gets the soapbox -- and makes others worry along with her -- thereby continuing to create fear and despair. The same issues are present in my family, and in many families that come our way. Adam's siblings may have to watch out for him one day. Instead of it being a burden, we try to foster it as just a way of life -- a way of life that in our history would have been obligatory and not seen as a burden in this era of egocentric individualism.

Isn't it is also disturbing that the young man folding towels was not being paid anything at all, for all work should be compensated -- even for work in training. What is most fearful is the creation and continuation of a caste system based on disability -- or the presumption that ALL our autistic kids will be able to do is fold towels and stock shelves. Of course, we know that that isn't always the case, and while there is nothing wrong with sweeping the floors, let us not limit the opportunities and possibilities for many autistic children who will soon become adults.

And speaking of work, how can disabled people get to work if they are not equipped to at least begin to pay for public transit? How can they get to their first job interviews without financial support to launch them? And what happened to a truly inclusive society with the special transit that must be booked well in advance and does not always allow non disabled people to travel with them on special transit?

Our attitudes are the burden for autistic people that keeps them at bay.

The only way to really understand what autistic people are confronted with everyday is to talk to them -- those who have to spell out a sentence letter by letter, slowly. Or those who rarely talk or get to talk at all as well as to those who also have never talked as young children but can talk today. CBS didn't talk to autistic people. They only spoke to an Autism Speak's spokesperson who likes to spread fear instead of qualifying concerns and reframing lives in order to empower caregivers. The mother knew her son could contribute -- I, for one, would have liked to have heard a bit more from her. Yet, it's not just the service system that needs improving, it's our attitudes. As in the history of disability rights, autistic people must help run the systems that seek to assist the autistic children who will one day become the adults.

George Bush said, "'Let the shameful wall of exclusion finally come tumbling down.' He put his pen to the bill. Then Bush turned to Evan Kemp, who was sitting next to him on the podium overlooking the Washington Monument, and gave him an affectionate kiss on the head.

Bush's administration would promptly issue regulations for the ADA. There would be no four-year fight like that over Section 504. The law took effect in 1992. Many companies, particularly large ones, complied eagerly and reaped the rewards -- new customers, new workers, and good publicity. Passage of the ADA was an earthshaking event for disabled people. It signaled radical transformation in the way they saw themselves -- as a minority that now had rights to challenge its exclusion. But it was an odd victory; as radical as the ADA's passage would be for disabled people, non disabled Americans still had little understanding that this group now demanded rights, not pity." (Shapiro, pp. 140-141).

If there is any crisis that CBS reports, it should note the crisis of misunderstanding, intolerance and continued stereotyping. As Susan Goodman, President of CSAAC noted, "Because people with autism are the most difficult to serve, they are the first to be written off." (Shapiro, p. 144).She suggests that because of this, the autistic are the most segregated of all.

Presidential nominees might also take into account the numbers of disabled and autistic adults living in our society today -- valid, valuable and lo and behold -- voters.

One of My Favourite Blogs

Kay Olson's The Gimp Parade. Check out this poster "Good access is good business." Click on the picture to enlarge.

Absolutely.


Also check out The Perorations of Lady Bracknell:
"We exist in every culture; every race; every class; every creed; every nationality; every political party. We have arrived here as a result of accident, injury, illness or simple genetic glitch. We are adults and we are children; we are men and we are women; we are straight, we are gay, and we are bisexual. We are too frail to leave the house and we are strong enough to yomp across continents. We are desperately ill and we are at the peak of physical fitness. We die young and we live to a ripe old age. We are accepted in our communities and we are locked away in institutions. We have been this way since birth, and we have been this way since yesterday. We are the premature baby and the great-grandparent. We are the criminal underclass and the pillar of society. We are the warmonger and the pacifist. We are the teacher and the student.

We are, without a shadow of a doubt, the most diverse minority group on the planet. We are everywhere you look, and yet you do not see us. We are one in seven."

The Media Does Not Convey The Whole Message

As many of you know, Amanda Baggs and many people at the AutCom conference in Edmonton which was held in October, will be on CNN this Friday night on Anderson Cooper 360. The shortened version aired Monday night and you can read the transcript here. I am interested in the way people construe meaning. TAAProject has heard from more autistic people as a result of the broadcast. It has also received calls from people who want to "heal" those they saw on the broadcast (which of course would be offensive to those very people who were on CNN). It is the nature of the media beast, of expression and art itself: what one sees and hears is a result of one's own experience and the challenge is to study and stretch beyond ourselves (the proverbial "comfort zone"). Please read Amanda's post on her feelings about the broadcast.

I am concerned for autistic people who really put themselves out there for the purposes of getting out the message. It's a Catch-22 situation. If you are visibly disabled, you are discriminated against or receive the insult of low-expectation. If you are "functional" or invisibly disabled, you are questioned or treated with disdain and do not receive the understanding you need in order to be able to contribute. People have a hard time understanding autism in the way of dissonance of skills --be it in "doing something" inconsistently, or even verbalizing.

Despite all this, I want to say that I am really am grateful, because I am beginning to understand how frustrating it really is. Communication is already challenging for many of us, never mind jumping over such strong stereotypes that are deeply embedded in our society. While television can be important to get messages out, the work behind autistic civil rights (in the way of the writings and contributions of autistic people) is even more so. The media cuts and edits dialogue, extracts meaning, and it gets filtered or interpreted in ways not always intended by the person being interviewed. The purpose of many reports is to produce a general message for public consumption. Sometimes it is meant to sell papers and acquire viewers through sensationalism. We know that the messages that come out can be whitewashed. There is nothing simple about human or autistic experience, and the media tries to distill it for the simplest message, which is not always fair.

We've all heard that the grade level required to read the average newspaper is quite low. I found this blog "Common Sense Technology" that suggests that newspapers are written to the 3rd grade reading level. Adam will soon out read us all (he has been reading since 11 months of age and he is only 5 1/2). Seriously, just think about how simple the arguments have to be! It is important to read outside of the newspapers and what gets portrayed on television and it behooves us to "question everything." For instance, I let others know that the piece would be on on Monday night. I received emails back asking, "is this an accurate report?" That is the right question!

Still, while activism doesn't happen as frequently on Capitol Hill or Parliament Hill, it has ended up on the Internet, and the media does a great deal to send out messages to a larger public. That said, the media and the public are still learning (some might disagree saying that many reporters never learn -- Margaret Wente's report this past year in the Globe and Mail on autism was most definitely an ill-informed piece of journalism and did not "show two sides of the story." Sadly, it is not an individual case of sloppy journalism). As a parent, I keep learning about the community to which my son belongs, and I want to stand beside him. That means I want to stand beside all autistic people, for they continue to teach me so much and I also stand with parents who are open to learning from and assisting their children.

There ARE journalists who are really getting interested in the more complex story. I wish to encourage a Pulitzer Prize-winning one! Why not? Do autistic people not deserve it?! What about an article to discuss disability rights and culture and perhaps autism as the newest disability to be confronted with extreme bias that is at the ever-confusing ethical crossroads with bioengineering and Neuroscience -- that parallels with questions of how much a society should enhance itself? It should be written by an autistic journalist, but can be attempted by a non autistic one if the perspective (and inherent bias) are qualified.

For certain, opening up one's life is really difficult. So much vulnerability and the discrimination is ever more apparent when it gets met with such hostility, disrespect and utter naivete from some people. I look at it this way, if one is open to listening and learning, and keeps being open to confronting their own bias in order to understand before just discounting the perspective of the autistic person, then the learning has just launched.

I keep thinking of how much gratitude I have for the people who continue to go out there in the face of such adversity, because I really can't come up with any other way than to open up in the face of it. Adam's opportunities have been built on the backs of autistic people today and who before them came people like The Rolling Quads at Berkeley, and many other people in our disability rights history. Ed Roberts, a quadriplegic who ended up becoming the chief of The Center for Independent Living -- an agency that "a decade and a half earlier had deemed it 'infeasible' that he would ever hold a job.'" He had a son, Lee, and later "underscored the silliness of a system that tried to write off people based on the severity of their disability." (Shapiro: No Pity: People With Disabilities Forging A New Civil Rights Movement,p. 54-55). The events at Gallaudet University and the protests that lead to the appointment of its first deaf president I. King Jordan, were significant that lead to the Americans with Disabilities Act just two months later. There are tremendous acts of courage and perseverance, in addition to these events, by many other disabled individuals of all "functioning" levels and "severities."

Many people do not even realize that the opportunities they have for their autistic children today exist because people with disabilities fought, through adversity, for the very rights we are beginning enjoy. Yes, we still have a long way to go, but at least we have a path to go there and I do not want it gated. Organizations forged by parents typically "[aroused] the public's fear of the handicap itself" (Shapiro). In the case of the Muscular Dystrophy Association's telethons, for instance, "the telethon makes viewers more afraid of handicapped people" (Shapiro, pp. 21-22.). We witness the same "marketing of fear" today in our own autism organizations lead by non autistic people, who put autistic children as "poster kids" in order to call for the prevention of autism while ignoring the adults. I hope for a day that non autistic people work with autistic people without talking and advocating over them. I write this because don't you know the saying that we teach others what we most need to learn? Michael Moon will soon become our new TAAProject's (The Autism Acceptance Project) President for this very reason. Brian Henson and Martine Stonehouse have been activists in their own right prior to the incorporation of The Autism Acceptance Project and we are lucky to have them on our board.

Some parents currently attack our autistic members of society as being "not autistic" or not "having the right to speak" because they are "higher functioning" than the children they have. And yet, people with all kinds of disabilities, and severities of them, have fought for many years so that our children do not end up in institutions, or can go to community schools, and have access to special services and accommodations.

Perhaps this is what we might keep in mind when the next show will be aired, the next newspaper report published. The media is watching and listening and learning. I encourage all autistic people to hang in there and continue so that no one speaks on behalf of you, for no one should and no one really can.

The Ineffable Language

Here is Grandma and Adam on around the University Music Hall and Philosopher's Walk. Adam likes it there -- just like his Grandparents. My parents used to take me at Adam's age, to U of T music concerts in the Edward Johnson building (they are trying to take Adam now as well). Music was a major part of my life as I took dance, played many an instrument and was a singer in choirs and later, in bands. Of course, those of you who've been reading this blog know that I moved into fine art history. My love of art, music and philosophy was cultivated by my father who collected. He also made me read Wagnerian librettos by the age of twelve despite my protests (I'd rather listen to Michael Jackson at the time), and he believed that a mighty discipline could be transferred from a military-like barking: KICK! those Kabalevsky Kicking Stones, he said over-emphatically from behind my shoulder (which ultimately lead me to win first prize in the Kiwanis Music Festival).




But a military-like discipline was not my style. I was a quieter, poetic type who preferred to explore my creativity through other pathways (reading books under my covers with a flashlight was common). I never became that concert pianist, although I want to play again as I struggle to read my notations (I was always better at playing by ear). I never became a visual artist, despite my appreciation. Now at forty-two, I try to work on the craft of writing, recognizing that I will spend the next thirty more years of my life, if I am lucky, attempting to develop it. What of this do we pass on to my child? While he may appreciate music he may not like to play it, or even be able to. He may be the consummate listener.

The most awesome savants work endlessly at their craft -- the sheer obsession and focus that nurtures the end product. While a gift is clearly present, I am not convinced that even savants do not work tirelessly to become "savants," for it is the intense focus, or "obsession" as some call it, that creates the beauty and the ability. I am disturbed when "plain old" autistic people, for the mere fact that the "do" art, are called "savants." This happened when I curated The Joy of Autism: Redefining Ability and Quality of Life exhibition. This cheapens their Personhood, and the propensity to artistic endeavour for all human beings -- for art is nourishment. No, not all autistic artists and musicians are savants for the mere fact that they are artistic, or have some ability and enjoyment in the making of it.

Adam enjoys music. He likes to sing, though talking is much more difficult. As I learn that song is deeply embedded in our brains and can be "extracted," if you will, in even the most seriously brain injured, I believe that art and music are a part of human mystery -- the human "spirit." Despite all attempts to map it and observe it on FMRI's and TMS's (Transcranial Magnetic Stimulation), I wonder if we will truly transcend what has fascinated philosophers for all time. Isn't it part of being human to question what makes us so? What will happen if that mystery disappears? Will we still be human? Will science decode the very nature of humanity -- the deeply embedded stuff of consciousness? While art informs us of cognition, it also equalizes and unites us. At least it should.

Neuroaesthetics is fascinating to me, and I'm in the process of studying it. It is thrilling to see this confluence of ideas -- of art, philosophy, music, and the sciences. My father used to hate the fact that universities begin to "teach trades," if you will. An engineer turned businessman out of necessity, his worldly entrapments abated on Sunday mornings as he engaged me in discussions about Roman History, Linguistics, Emmanual Kant, Baruch Spinoza -- and then the perils of the MBA. Perhaps he was a purist in thinking that universities should provide a "universal education." I have inherited such a belief (although I struggle to attain the same level of focus as he in my studies). In art history, how intrigued were my professors when I brought in musical pieces and examples from other genres to illustrate a period. I owe it to my father -- the man behind the camera, by the way, in many of the photos I post here to my blog.

Last night, Oliver Sacks came to speak in Toronto. He has popularized the merging of such ideas -- of art and science in his new book Musicophilia. I quite enjoy listening to anyone discussing art, cognition and the tacit suggestion that what we don't know makes us fully human -- of the unbidden, the underpinnings of the brain, which we can also understand through injury, and the capacity of the brain to compensate and adapt. While I am fascinated how science can observe the functioning of the brain in action, I question if science, through its "simple art of observation" as Sacks says in his book, "may be lost, that clinical description may become perfunctory, and the richness of human context ignored." Isn't this missing from our current scientific studies in disability and autism? The human context? The human experience? Afterall, when science de-constructs, what might it take away from human experience?

I will hopefully be writing more on this myself in the coming months, as the arts are my true passion. I revel in Adam's own unique experiences, and I try to document the things he loves and the context in which he places them in order to try to make a sense out of them. He enjoys the number 4 today, and usually, 7 soothes him. When he repeats the number 11, I know he is very distressed. And what of his art that embeds letters underneath his staccato (okay he is still only five and a half), brush strokes, or his innate musical ability (which as Sacks notes, tends to be innate in all of us, but is subsequently pruned)?

So I find it ironic that my son traverses the path of his Grandparents and of his mother at the university's Philosopher's Walk. We never know what will become of it, of us -- the matter of it all. You see, not everything can be distilled. There are some things that are just plain ineffable -- music and the human spirit perhaps just two of them.

Our Best Friend

This is Kiki. This photo was shot about an hour before I got dressed up for an event. She turned a year-old this week and is a mild-tempered, sweet girl. She loyally follows Adam around the house and lies at his feet. She wants to be everywhere he is -- and this is not something I had to train her to do. She just loves him unconditionally.

Some people note that their autistic kids don't take much interest in dogs -- opposite to cats and more "like humans" the way they socially "get in your face," they may receive the same atypical response as people get (at least people who demand eye contact and typical social responses) -- which is something I've read from other autistic people. But Kiki is not just a pet, she is a presence. What I thought was an adorable nuisance when we acquired her has turned just this month for me anyway, into true love. I don't know if any of you have experienced that sudden bond? Maybe it even happens to people when they give birth. Sometimes bonds don't happen immediately -- they just suddenly click. How did it happen for me? Was it how she stayed by my side the night we had a dinner at our home with a bunch of strangers, or how she seems to be following Adam around the house when he's home -- her loyalty stronger to him than to me? She doesn't read his supposed "non response" as disinterest. She is just there, always by his side, often under my feet when I work at my desk when Adam is at school...waiting.

At first, I wondered if Adam would take to a dog. I got her because like me, Adam is an only child. Granted, his has four half-siblings, but they are all so much older. I grew up with dogs, and I wanted Adam to have something cuddly or "just around" like I did. I watch other kids with Kiki and they are more animated around her, wanting to pet her or feed her. Adam goes on playing and his way of being around her is much more subtle. Some days, she pisses him off when she cuts in front of him with excitement. Other days, she lies on her back, paws hanging and teeth showing like a mischievous grin -- in some dog-induced bliss of anticipating that tummy-rub. Adam thinks it's hilarious, and he may even go to pet her.

Adam is really changing again these days -- he is moving on to six years of age soon and I can't believe it. He put himself to bed on his own last night and was really clear he didn't want me in the room -- his desire to be more independent and in control is very apparent to me these days and I don't take it personally, but see it as a positive thing. He can do so many things for himself and when he does he is so proud. His communication was of upset with me for wanting to comfort him, but he didn't want it. He was over-tired and wanted to be by himself, and good 'ol mom thought she could solve it for him. I am acutely aware of how not listening to this communication would have lead to aggression, as he was already kicking me away (not actually kicking me, but the air that shifted in my direction with each thrust).

Tomorrow, we start a concentrated AAC program with a device. We have been working on literacy and it's been going very well for him. He is so proud when he writes things down, or can read to me a few words from a story book. His awareness is catapulting and I know he is aware already of his difference. I so want to support him emotionally with is growing self-awareness and awareness of how the world works and perceives him. And in the meantime, Kiki will be there, always beside him no matter what, I'm sure.

Sex and Disability in the City

I had a wonderful time last night at a Barmitzvah. I talk to a lot of mums who feel so burdened by all kinds of responsibilities. We forget to offload, to just be ourselves, and come back to our daily lives with refreshed views. Clenched in the vice of duty and worry, we could, if we don't go out and live, forget who we truly are. I always think about this -- how we are supposed to be so devoted to the point of forgetting to enjoy life! Long before I knew anything about disability, I would have thought that parents with disabled children make the ultimate sacrifices, including a ditching of their very sexuality, which in essence, makes up who we are! Not only are disabled individuals perceived as asexual beings, I think a lot of parents fear that this is how they'll be viewed if they have a disabled child -- that "life is over," attitude. I urge people to check out the exhibitions the Abilities Festival put on in Toronto this fall -- couples (both with Down syndrome) with a child, beautiful photography of disabled bodies. Man, there was nothing asexual about it!

We are perceived as some kind of "heroes" who give up our time, who make extraordinary sacrifices. While it is challenging and we all have are own unique "crosses to bear," I really don't like when people paint me out to be a hero of any kind. I thank their kind words, for perhaps it is I who don't take to compliments gracefully enough, but I see devotion as something that just is -- not a full sacrifice of myself.

When Adam was first diagnosed, I fretted. I still give most of my time and days to him and his development. I have also learned to let go a little over time. I don't think it's something a parent can just do upon a diagnosis. It's something that has to be learned. One has to give themselves permission.

They say you have to put on the oxygen mask in an emergency on yourself before you put it onto your child. When I feel the pull of being a mom versus doing the things I need to do -- that purgatory of guilt -- I tell myself that I owe it to Adam. I owe him my passions, my failures, my humanity as a model for his own. I feel I would cheat him if I didn't dance the night away, fall flat on my face some days, show him who I really am. Making room for who I am perhaps allows me to make more room for him to be who he is.

Dance to the Autism Beat

Adam is drumming to his own beat, and I am tapping my feet to the beat of these people:



Message from the You Tube poster: This band was formed by autistics since 1991. They are living in Taiwan and had won many awards. Please kindly give your comments to encourage them. Thank you.

Person-Centred Planning

There are many options to approach the ongoing development of an autistic child. Talk to many a family with an autistic child here in Ontario, however, few are aware of any options in planning, AAC, and facilitation of teams. Add to that limiting services by suggesting there is only ONE type of therapy to assist the autistic child, and we have an urgent situation where there are few services available here in Ontario that are actually subsidized. Typically in Ontario, we have to do it this way:

1. Get on a wait list for ABA services with TPAS;
2. Wait for an "approved" supervisor (a psychologist with BCBA accrediation) to run the child's ABA team;
3. Find ABA therapists (usually young women, but not exclusively -- often students interested in pursuing further study in ABA or seeking out part-time employment;
4. Add an SLP and an OT to the team, which is not subsidized to the same extent by government (there are some programs but the wait lists are pretty long -- Geneva Centre for Autism in Toronto is an example of some such services -- a full-time OT was just hired).These service providers often become part of the overall team and goal-setting process. Some kids are lucky if schools bring such clinicians to consult in their settings. Training for SLP's is limited -- very few are trained in how to use technologies to assist learning.

From there, a team moves together, but within the ABA framework (which is changing in shape and form -- so we cannot call it ABA anymore).

New parents to the process may not realize that there are options that may include a myriad of professionals as well as other team players that can assist the autistic child in their development.

I thought families might be interested in this tool: "Little Ones Have Big Dreams Too." By visiting the Insitute on Disability at the University of New Hampshire, you might find some ideas to assist your current team or help direct change within that very team. It takes a community to raise a child, so the saying goes. I think the struggle for all parents is to ensure that we bring people into our family folds whom we trust, who share our values and respect our goals for our children. In the booklet, there are questions to assist us in facilitating our teams, and for mapping a plan of action that is child-centred:

1. What makes your child want to communicate and connect with you?
2. What makes him/her sparkle and smile?
3. What creates social connectedness to others?
4. What makes him/her withdraw?
5. When is s/he least likely to communicate?

Our friends in the US are way ahead of us in providing supports and subsidies beyond the ABA model, but they are still struggling in many states. I know my friends in ABA studies are also interested in moving beyond the ABA model, telling their students that "there is more than one way for each child." Thankfully, we are moving beyond a strict paradigm. Many of us really need to take the "behavourism" out of the teaching approaches to describe education and assistance.

Interestingly, those questions that were outlined in the booklet were the questions that I asked myself intuitively, long before we learned that person-centred planning existed. Instead, I resisted and resented pencils scratching on lined paper, carefully marking out graphs typical in ABA programs, and therapists arbitrarily making decisions about what Adam SHOULD be learning according to them, without considering his own path and pace at all. While it does take a "village" as they say to raise a child, let's make sure that the village we bring into our homes and into the lives of our children are ones who don't work contrary to our children and our values.

The Autism Acceptance Project Blog

We are opening up the blog for other writers. Kathy Grant just wrote a post on what TAAProject means to her. Please visit The Autism Acceptance Project blog for more articles from our TAAProject community and write us if you are interested in becoming a regular contributor.

Registered Disability Savings Plan

“Helping Canadians with disabilities means giving them the means to plan for their financial future,” said Minister Solberg. “With this proposed legislation, Canada’s New Government is taking an active role in making sure the people who need it most are getting the long-term financial support they require.”

Interested parties are invited to provide comments in writing on the draft legislative proposals. Comments can be sent jointly to the Tax Policy Branch, Department of Finance and the Office of Disability Issues, Human Resources and Social Development Canada at 140 O’Connor Street, Ottawa, ON, K1A 0G5 on or before October 23, 2007.

Shifting Direction

I thought that posting Madeline Kahn's I'm Tired video might not be fully appropriate, but I can't get it out of my head. So, when I get a little tired of debates that shift the direction away from Adam, I turn back to him. He is my solace and my direction when debates rage and others try to convince us that our children are "hopeless," or reporters cheapen the discourse by "parsing complex realities into [simple] divisions of two." -- Stephen Jay Gould


There is nothing simple about Adam, or his humanity and existence as an autistic person. So I am back to celebrating (not that I ever stop when it comes to my child). Readers may notice my blog always sways from disturbing trends in society back to the joy of being.

"To appreciate children as gifts is to accept them as they come, not as objects of our design, or products of our will, or instruments of our ambition. Parental love is not contingent on talents and attributes the child happens to have. We choose our friends and spouses at least partly on the basis of qualities we find attractive. But we do not choose our children. Their qualities are unpredictable, and even conscientious parents cannot be held wholly responsible for the kind of child they have. That is why parenthood, more than other human relationships, teaches what the theologian William F. May calls an 'openness to the unbidden.'" -- The Case Against Perfection, Michael J. Sandel.


It's rather cool to watch Adam, and consider my role in his life as his rock and maybe his guide, perhaps for a time, but also capable of achieving and growing on his own:

Autistics 'We Don't Want A Cure'

Today in the Globe and Mail, Andrea Bradford-Lambert and her son Griffin are interviewed with others regarding the philosophy of acceptance.

There is one thing I would like to correct Mr. Doherty on: we are NEVER "ashamed of" our more severely effected disabled members of our society. As much as I respect Mr. Doherty's right to seek the assistance he needs to attain for his child, I do not agree with this mischaracterization of the neurodiversity or acceptance movement.

I also do not agree that autism is just a "difference." It IS a disability. The "difference" analogy comes from the notion that there is no normal -- that normal is subjective and concepts of normalcy can change over time. Therefore, we are all "different." We are concerned that pejorative referencing alone (extreme characterizations of autism as "a living nightmare" and the like) will increase the stigma, prejudice and LACK of support. The latter may be replaced with government-mandated normalization campaigns which suggest that if you are NOT like others, you are less valued and, yes let's take this jump, do not deserve to exist. One might say that you are doomed if you do not fully "recover" from your disability.

It is not to say that disability is not challenging for families. On all levels - with these positive or negative sketches of autistic existence -- we have to recognize the result of gross generalizations and how they come to characterize autism or any disability over time. I feel strongly that we have to hold the media accountable for the manner in which they report about these issues.

The point of the whole "movement" is that it is okay to be disabled (for quick references check out TVO Agenda on "The Right to Be Disabled" as well as website Disbility is Natural to start. Society has an obligation and must recognize an individual's right to be disabled and the access required that is currently denied. In other words, once we value disabled individuals for their inherent strengths and abilities, as well as accepting and accommodating the disability, we begin to dismantle prejudice and overwhelming assumptions that disability is a "fate worse than death" or whatever. We also begin to value inclusion as we humanize the disabled and what they already contribute to society. These values should seem natural in a society that claims to celebrate diversity on all levels. Yet it still seems to be quite a conceptual "jump" for many people, which is reflective how locked into our bias and preconceptions we may actually be.

Let us all work together to find the supports that ALL autistic individuals require to ASSIST them to reach their fullest potential. The argument here is that assistance is an acknowledgment of this right -- not a mission to "normalize," because our assumptions of both what is normal and what is not are constructed on historical bias and abstract conceptions, as we learn from many disability communities.

Also, we all have to recognize that not everyone will agree on what they want for themselves as autistic individuals. While there is currently no cure for autism, other autistic individuals may seek out ways to assist themselves in this complex world. Note the key word is "assist." This may come in forms which we may not even conceive of at the moment, but are still do-able right now by learning from autistic individuals first what it is they need in order to contribute to society as autistic people.

What this Globe and Mail article shows in an attempt at balance, is the complexity and diversity of the autistic community itself, and the fact that there are individuals who do not want to be whitewashed under the autism as "illness" description. Perhaps for this aspect alone, I accept the article as a shift in the right direction. If we can embrace all needs, much like what happened to the deaf community after its virulent debates, we have taken a step forward. Yet, I'm afraid that the Globe article still misses some very important points, which I've already attempted to mention.

There are still bigger steps to take. The biggest is this understanding that the millions of North American citizens who are disabled have a right to be understood and this includes autistic individuals. Autistic individuals continue to generously express their experiences for which they are largely ignored. We all have to learn from their views on what they need to thrive, and their life-experience benefits children because we as educators, clinicians and parents develop empathy and understanding in order to provide more appropriate methods of assistance. Autistic individuals need to participate and be included in society -- and valued for their way of being -- not forced into becoming some normal-seeming simulacrum. Disability need not be "catastrophized." By suggesting the latter, disabled individuals have been subject to human rights abuses exemplified throughout human history. Perhaps we need to keep illustrating those so we "never forget."

Valuing people for who they are will lead to better services and access that all families and individuals require.Some of this may require the right to medical treatment (we do know that because of disability, many individuals are denied the same "treatment" as other citizens in our society), even though disability need not be characterized in the medical context. As a human race, we are all subject to medical conditions that require medical support throughout our lives. A medical construct for discussing autism, as well as other disabilities, does not fully characterize or adequately describe the experience of being disabled. One might not describe one's experience of "being human" in the strictest medical sense.

I do have an optimistic outlook for Adam's future -- my son who still cannot speak at nearly six years of age. As we work for more understanding of autism and acceptance of the way he manifests his communication, I see possibilities of the access and accommodation he may need as he seeks higher education and employment. He may need an aide to help him navigate the outside world, he may need a device in order to help others understand what he is thinking. There is nothing wrong with interdependency in order to attain these goals. He certainly is worthy, wonderful and deserves these modifications by us as society so that he can reach them, and share his life with others. It makes me a little angry when I see money being funneled into "gifted educational programs" -- because these children are "our future," while we view autistic children as our future burden on society. I could go into the giftedness of many a disabled person, even those with "severe disabilities," not to mention the severe anxiety issues of many a "gifted" child. Adam has an equal right to prove that he can contribute and be educated in a manner that suits his learning style and ability to manifest his understanding of the world. A respect for dissonance is what needs to be cultivated by further explanation. For myself, I have better skills in some areas than others. This dissonance may be more extreme in some areas for some individuals. It warrants no less sensitivity and acceptance.

One explanation of this "dissonance" that speaks louder than words is by witnessing an individual who has been taught to communicate using a device. It demolishes assumptions that "just because you can't speak doesn't mean you don't have anything to say." Perhaps that is the best example we need in order to heed our words and monitor our attitudes towards every disabled individual who might otherwise be assumed "unaware," and thus subject to various "treatments" that we as parents and a society feel is in their "best interest."

I also look forward to more discussion about autistic individuals and what they contribute to the Canadian economy -- both in the work force and through their unpaid volunteer and creative work (Bruce Mau in the exhibition Massive Change, estimated volunteerism and unpaid workers to be the billion dollar engine of today's economy). Right now, we only hear about how much autistic people cost, which yet again adds to the stigma they face. I challenge others to valuate their enormous contributions.

So thanks at the attempt, Erin Anderseen of The Globe and Mail. This article was a refreshing change that many of us need in order to move forward, but it's still not the full story reflecting accurately the needs and issues confronting the autistic individuals right now. The article is reduced to the black and white dialogue that the media tends to default to on a regular basis (cure versus no cure) that sadly clouds the real issues and real needs of our community.