"Stigma Hurts!": Do We Only Have It Half Right?

I have to admit that oftentimes, I wonder what's not to "get" about de-stigmatizing autism. I mean, it's something that we seem to "get" in many other disabilities and mental "illness." We hear the word de-stigmatize a lot these days in terms of depression, bipolar disorder and today in the Globe and Mail, about mental illness. But the rhetorical landscape remains confusing.

Even with "illness," I am compelled to put it into quotation marks because mental illness might be relative, maybe sometimes subjective. Who deems another "mentally ill," after all? Was Vincent Van Gogh "mentally ill?" Or was he an individual who lived with schizophrenia, who heard voices in his ear so that he cut it off? Or was he just Vincent, living with the egomaniac Gauguin and after their fight, cut off the mere tip of his ear to get the argument out of his head? A shocking gesture, perhaps, and not unlike some other eccentric artists I have come across who have mutilated themselves (I am not going to judge here) -- for life, as some say, can imitate or even BE art. Still, Van Gogh, because he was so very eccentric, also thought himself mad and checked himself into a mental hospital towards the end of his life. Would he have if others had accepted him as he was? And yet, such intensity also came with his gift, his contribution to society in the way of his art. Art, like no other during his time. Art, that changed the way others viewed the world by way of his evolutionary brush strokes.

Quality of life is impacted when one lives with stigma and exclusion. The stigma lends itself to exclusion -- from jobs, from schools, from communities. The disabled say that their ability or dis-ability is effected by the way society understands and accomodates the disability. So it is wise to tread carefully as attributions of "mentally ill" might be social ones -- others might accuse us of being sick" or "ill" or "not normal" or "genetic abnormalities," like many do of autistic individuals, and the individual is neither delusional nor ill at all. So, as I applaud the fact that many Canadians are on the path to de-stigmatizing depression, schizophrenia and the like, I pause. Have we only got it half right? Are we still de-stigmatizing with one caveat: sure, we'll not stigmatize you as long as you get yourself recovered. Because as long as we truly keep ourselves in the dark, as long as we refuse to try and understand, we will continue to marginalize and make assumptions about others who are different.

Margaret Trudeau now advocates for the de-stigmatization of Mood Disorders. On their website, the homepage reads "Stigma Hurts!." It reads:

"Stigma has been defined as: Prejudice based on stereotypes, resulting in discrimination (Corrigan & Lundin, 2001). While public attitude towards some mental illnesses seems to be softening surveys also reveal that people with serious mental illness and addictions are seen to: lack intelligence, are lazy, morally reprehensible, violent and dangerous, have nothing to contribute to society and are unable to recover. People are routinely denied employment, access to health care, housing, insurance and mortgages. Discrimination denies full citizenship and equal rights.

It is this diminished view which allows individuals, communities, institutions and government to accept a reduced social and economic status for people with these conditions than we would accept for oneself. As a consequence stigma and discrimination towards people with mental illness, neurological conditions and addictions is under researched and poorly understood. There are no systems of surveillance in place to monitor the levels or changes in the degree of stigma and discrimination experienced within the general population.[i] We know that stigma is not experienced equally across all cultures, by all consumers or consistently across ones progress towards recovery.

A component of recovery includes rejecting self-stigma, and combating the negative attitudes and discriminatory practices through public education and advocacy. Studies of the magnitude and nature of stigma need to account for both the disease- specific and culture-specific aspects of stigma. However, little research has been done to identify those factors which protect people from the harmful effect of stigma or that promote a healthy progression toward acceptance."

Now off to the Mental Health Commission lead by former senator Michael Kirby. On that homepage, Kirby states:

"I look forward to the day when we can say that we live in a country that has put an end to the stigmatization of mental illness and has eliminated discrimination against people living with mental illness; to the day when we can say that we have put in place a truly seamless continuum of care across the lifespan that allows people living with mental illness to find their individual road to recovery."

Not all individuals feel they have anything to recover from when it comes to disability and I am also referring to autism when I am referring to disability. It is not a denial of the obstacles one can face with a particular disability. It is about where the pressure lies in terms of conforming. What and who "needs to change?" When de-stigmatizing something, we have to believe that there is nothing to recover from. In place of this notion, we might need to consider replacing "recovery" with "accepting and accomodating." We may have to put the type of assistance and education into the hands of the individual -- "self-determination" as it is often referred to. Further, one's quality of life is based on an individual's acceptance by others in their community, and this acceptance can lead to self-acceptance. It means that we treat others with equality and with sensitivity to their individual needs. It means that we learn to understand the issue or disability in order to learn how to educate autistic individuals and others with special needs in our schools.

The idea of acceptance is fundamental. Realizing what is reality for many individuals who have had to live in denial or suppression of their "way of being" has been, and continues to be, much more damaging.

We have to learn how to learn about autism rather than how we tend to ascribe it the other way around. We often say that autistic people need to "learn how to learn." Yet, we have to recognize what we mean by that. It means that "they have to learn how WE learn," while ignoring the fact that autistics learn in an autistic way. Autistic people learn. How can we learn how to teach them? Where is the two way street in special ed?

After speaking with many in the world of disability, a world that seems to be quickly becoming my own as I traverse it with Adam, the word "assistance" when it comes to autism seems much more appropriate -- "merging help with respect," say Norman Kunc and Emma Van Der Klift in their outstanding paper Hell Bent on Helping.

With so much money going into genetics research rather than research that seeks to understand autism and help autistics live rich lives with autism, we do not know how to teach, employ and interact or accomodate because our minds are on the goal of preventing, curing and recovering (can we say "saving") autistic people, literally, from themselves. Do we have this right? Or is our responsibility to learn and merge that teaching with respect for how autistics learn so that we learn to function in society with disabled people contributing to it?

We know that some individuals have more challenges than others and the levels of assistance differ. But as I continue to read the rhetoric, even if it seems positive and the goal is to achieve a world that de-stigmatizes the individual with either autism, another disability or mental illness, I scratch my head and wonder how the rhetoric will be used: to provide more fuel to the people who want to "recover" others, and change individuals so that they are "normal," or to provide the supports and assistance to enable people to live freely and comfortably in society as they are? In other words, do we value the individual who lives with the mental illness or disability, or do we value them ONLY when they recover or come as close to "recovery" as they can get?

As the Down Syndrome Society includes in its site this article from The Chronicle Herald:
Down syndrome: rights doomed by the media
By RENATE LINDEMAN

"Canada’s signing of the UN convention on the rights of people with disabilities on March 31, 2007, marked another milestone in advancing the rights of people with disabilities. It appears we have come a long way. People with Down syndrome are
included in their schools and communities, they get married, enjoy equal-opportunity employment. But beneath all this outward appearance of progress, a different message can be heard....

In Canada, this is not a heartening time to have Down syndrome....

The "value" of people with Down syndrome was being questioned over and over, as they were accused of being unproductive and a drain on resources. "Value" for society was only measured in terms of the ability to make money, and no value was placed on care, respect, acceptance or love. If society views people with Down syndrome as a "burden" in these times of abundance, what will happen if we face an economical recession? We cannot allow people with Down syndrome to be the scapegoat."

It comes down to value. It strikes me as odd, in a world that values "diversity," that people can sometimes stare at Adam strangely, which shows that he is not valued (or understood as understanding leads to valuing) that much by others. Instead, if they have heard anything about autism, they may stare at him with fascination and label him under their breath. It is with a strong resolve that I choose to ignore those scrutinizing glances, even if I notice it, for Adam's sake. It is with the same resolve that I question society's use of rhetoric so that his value is never undermined.

Grab the World

"Caroline had listened intently, her heart lifting with every word. They left for the library and went for coffee. Caroline would never forget those hours, the excitement she'd felt, as if she were walking from a long, slow dream. What would happen, they conjectured, if they simply went on assuming their children would do everything. Perhaps not quickly. Perhaps not by the book. But what if they simply erased those growth and development charts, with the precise constricting points and curves? What if they kept their expectations but erased the time line? What harm could it do? Why not try?" (Excerpt from The Memory Keeper's Daughter, Kim Edwards, p.98.).

Caroline is the nurse character who takes Phoebe, a newborn with Down Syndrome to care for. The father, a doctor who had lost a sister to disease, delivers his own twins. The second is Phoebe. He tells Caroline, his nurse, to take her to the institution, but neglects to tell his wife. He thinks he is sparing her from pain. Instead, he tells Norah, that their second child is stillborn. He ends up mourning longer than his wife, as he receives news of Phoebe doing just fine -- Caroline refuses to leave Phoebe in the institution she visits.

He must live with his guilt. The scene above is Caroline engaged in a weekly play date with another mother and Down's child. She agonizes that Phoebe, at over a year in age, has still not rolled over. The other little boy, at three, is just beginning to stack blocks. They let them play, but the play is also targeted. Phoebe has not yet grabbed the dangling keys that Caroline keeps putting just within her reach. Her efforts seem futile as she attempts the exercise daily. Until, unexpectedly:

"Phoebe was making soft sounds reaching. Her hands were brushing against Al's neck, his collarbone, his dark plaid shirt. At first it didn't register with Caroline, what was happening; then, suddenly, it did....Phoebe was reaching for the medallion. Not batting at air, as she had this morning, but using Al's chest for resistance, her small fingers scraping and scraping the medallion into her plam until she could close her fist around it. Rapt with success, she yanked the medallion hard on its string, making Al raise his hand to the chafing.

Caroline touched her own neck too, feeling the quick burn of joy.

Oh yes, she thought. Grab it my darling. Grab the world."(pp.104-105)

Perhaps what constitutes "successful parenting of an autistic child" as discussed recently on the blogs, is the innate knowing that there is no harm in waiting. As we push to help our children achieve the developmental milestones, we realize that much of our efforts our futile -- the forced effort, that is. Somehow, the milestones come, be it from a combination of teaching and environment, or because it comes naturally over time, with that confluence of experience, ability and desire. That's not to be mourned. It certainly need not be catastrophized. The points and the curves don't mean much. No harm will be done if our kids take a little longer to reach one of those precious milestones, or if they even come to it differently.

Recently, a friend pointed me to this blog by journalist Patricia E. Bauer: Stand Tallor her other website www.patriciaEbauer.com -- bureau chief of The Washington Post, senior editor of Los Angeles Times Magazine and writer for The New Yorker. I highly recommend that all of us in the autism community reference her disability writing. I too like to keep talking about how autism is referenced in the media and will do so again this October at the Autcom Conference in Edmonton. You can also view my presentation on how autism is referenced at the MIT lecture I gave last May.

Patricia gives us many good reasons why we must continue to remain vigilant about the way autism is referred to. Here is an excerpt from her keynote speech about prenatal screening:

"Let’s start with what we can do as individuals. As I’ve gone around the conference, I’ve heard about some great things that people are doing in their own communities. Things like:

–Helping to educate the doctors and genetic counselors in their area by visiting their classes or professional meetings.

–Building relationships with hospitals, and talking with families who have a fresh diagnosis.

– Monitoring their local news media, and holding them accountable for their coverage and their use of language about people with disabilities.

These are great steps, but let’s not stop there. Let’s dream even bigger.

It’s time for us to insist that our organizations advocate forcefully on behalf of people with Down syndrome in ways that are targeted to reach decision-makers, to reach medical professionals, and of course to reach the general public. Here are some of the things we need to do.

1. We need to provide disability awareness training and accurate information directly to obstetricians, to gynecologists, and to the professionals who assist them. They need to hear the nuanced, compassionate message that is at the core of diversity and human rights: all people have value and dignity and are worthy of celebration. We’ve told them this nicely. Now perhaps it’s time to turn up the volume.

2. We need to put out lots and lots of well-designed materials that will teach doctors how to discuss prenatal screening and diagnoses with their patients. Senators Kennedy and Brownback have recently reintroduced their bill on this topic. Whether it’s this bill or another one, we need to find a way for doctors to get the materials they need.

3. We need to improve medical school curriculums, which include almost nothing about children with disabilities.

4. We need to hold publishers accountable for the editorial content of their pregnancy handbooks. Take a look in your local bookstore, and notice what those books say about our young people. If they carry anything at all, it’s more than likely a cold, clinical list of symptoms and diagnoses, guaranteed to strike fear in the heart of any pregnant woman. We must change this.

5. We need to use technology to convey our message. Where does your average 20-or 30-something look for medical information? Right. The Internet. If we truly want to help people make informed decisions, we need to get involved in the Internet in a big way, both in print and in video. Our content needs to be useful and modern.

6. We need to enable prospective parents to see that people with disabilities live good lives, and that they have warm, sustaining relationships with their families and friends. Presently, that information is only coming to them anecdotally, if at all. Imagine how different things would be if people could be referred to a website that allowed them to click on videos that would show them footage of people with Down syndrome, of all ages and ability levels, going through their daily lives. America’s teenagers are communicating actively through Youtube – why shouldn’t we?

7. We need to speak up to challenge the old stereotypes about our family members and ourselves. We’re not victims. We’re not heroes. We’re just ordinary people sharing slightly extraordinary lives with people we love and who love us."


As I watch Adam's exuberance, his joy, his desire, his beauty, his innocence, I consider that perhaps the world needs to think and pause for his sake; Adam -- who doesn't judge anyone, who, just wants to grab his own piece of the world.

Experience and Literacy

Disabled individuals, says June E. Downing, in her book Teaching Literacy to Students with Significant Disabilities, are often given little experience. As many non verbal or presumed "inattentive" disabled individuals are denied experience, this can significantly delay literacy skills. Downing says that people think that disabled people won't "get" anything from the experience, so the average person thinks, "why bother.... why take a blind person to the zoo? What would they gain from that experience?"

"Literacy builds on our life experiences, which is why it is imperative to provide children with multiple experiences to support their learning. Children with severe physical impairments may lack experiential learning due to the difficulty they have walking and physically exploring their environments (Blishcak, 1995). When childrlen have significant disabilities that may involve the multiple impact of physical, cognitive, and sensory impairments, the ability to explore and learn from this exploration may be even more hampered. To compound the problem, experiences can become limited as care providers question the value of these experiences. Instead of supporting the child's involvement in varied experiences on an ongoing basis, the decision may be made to keep the child at home, where he or she is most comfortable. Unfortunately, such a decision further handicaps the child, making it more difficult to acquire and understand basic concepts." (Downing, pp. 9-10).

She suggests that the compounding of reading, exposure, experience and varied teaching is the path to literacy. Sadly, at school, many students with significant disabilities seem to be overlooked (Downing) when it comes to such opportunities.

I see it in autism. I see an over-generalization, and a plea for money that rightfully belongs to all people of disabilities and I would hate to see funding get taken away for educational opportunities for others. The more I begin to study the other disabilities alongside autism, I see that autism is not all that dissimilar. There may be differences in some areas for autistic individuals for sure, and we need to build the understanding and sensitivity around those issues. However, we've made "autism education" and "autism funding" much too daunting. Few want to teach an autistic student. The path to acceptance, in my experience and many of my friends with autistic children, is empowering the teacher -- the "try this" approach that lets the teacher experience success. The teacher then feels that the teaching of an autistic individual doesn't have to be as daunting as it sounds.

In much of "discrete trial" teaching or ABA or whatever you want to call it, I see a lot of table-teaching of very young people (age two years). Sure, there is NET teaching too (Natural Environment Teaching), when the therapist believes it is time for the child to "generalize" his/her skills. It is a subjective choice by the therapist or supervisor, often based on the child's ability to respond to questions in a typical way, or do a task the way that is expected. In the meantime, hours, days and months pass by and the child loses experience because the therapist doesn't believe that the child can garner anything from experience without learning the skills at the table, first. If they child is on an outing, they are again expected to respond, to act typically, to talk in at least declaratives, instead of being allowed to experience in a way that may be unique to them. The emphasis in today's "autism education" is too heavily weighted in letter naming, letter-sound association "before accessing meaningful literacy," says Downing. She calls it a linear sequence of isolated skills.

We all need time to filter -- to let experience penetrate all of our senses. We need time to process, to get used to new things without being pressured or judged.

Teaching and experience must go hand and hand. A teacher has to believe in the innate garnering and registering of experience of the person they are seeking to teach.

Once in a while, a family member of mine would say when demanding "hey Adam look at this," or "do this," or "touch your nose," to appease his desire for Adam's normalcy, I suppose. When Adam didn't do it quickly enough or at all, this person would say "oh, he doesn't care." I don't think it was judgmental in a bad way, but it is certainly indicative of how most people view autistic people -- something we've all talked about so much on our blogs, so I don't need to repeat it here. And we all know that an atypical response or what we perceive as non response is NOT no response, or a lack of understanding. It is an inability to respond in a way that the rest of us have learned so we do not understand it.

That said, I believe in experience. No matter how hard it is -- when a child has a meltdown and you feel like melting away as a parent -- we have to get up and keep trying. Dinners out, the zoo, the movies even if for only ten minutes at a time -- we've got to keep exposing our children to the world that also belongs to them. Experience also requires time away from the table.

As for the blind person who "wouldn't get anything from going to the zoo," read about the blind person who shot a hole in one.

The Zen of Dog Sledding

This photo was taken a couple of weeks ago on our family trip to Alaska. On my knee sits Adam, laughing hysterically. In the back rides Henry, wearing the pink gloves I bought last minute because we learned it was going to be cold up there. As the dogs mushed, the jerk of the sled sudden by these mighty little dogs, Adam was thrilled.

"We could hear him all the way back at base camp," said a young woman wrapped in winter clothes in the middle of August. She is young and decides to give me two photos taken of us instead of one, "because he is so adorable," she says.

Should I mention that Adam took a helicopter to a glacier, had to wear earphones (he has always hated wearing those), and did not flinch at the hundreds of dogs barking, yelping and leaping even more frenetically as we approached because they knew they were about to go for a run, we were told by Molly, our dog-sled guide.

"I live alone further North," she said. "Just me and my dogs and no electricity." She says this just after we meet all ten dogs who will pull us along, each with their own distinct personality -- the one closest to my view who keeps looking back to check with Molly, as if trying to please her.

"Being up here all summer with twenty-five others is claustrophobic," she says to us as if she is confiding. "In can get a little crowded up here," she chuckles heartily, I think, knowing that to city folk like us, twenty five people is probably a kafe klatch. Yet I suppose being with twenty-five people stuck high up on a glacier, anything can happen. I guess I too feel a little confined when my home door is revolving -- maintenance workers, people for Adam, our large family, the events we have at our home, our friends. I wouldn't trade it in, mind you, but it makes me feel, well, anti-social -- striving for moments when I can be alone, writing like this. When a book is in progress, when there's much work to be done as with The Autism Acceptance Project, I want to find those long stretches of time to think, to work. The rhythm of my life is fast, and the moments with Adam, like dog sledding, are suspended in time. I relish them as much as I do the moments alone to write meandering posts like this. I relish the moments as I watch Adam's almond eyes struggle to remain open at bedtime, and he finally surrenders to sleep, his soft breath warm against my face. I savour the memories of each trip, each sleep, each ordinary day by recounting them as I do here. If all this is a homage, a memory of Adam's great impact on my life, then so be it. If it's about autism and thinking about it a little differently, then that's fine too.

I love this photograph. I love its joy. I love how Adam seems to drink in life, his precious and ordinary moments.

Wanted: Perfection

You can find this article about "getting rid" of Down Syndrome people as quickly as possible. I decided to post this as Adam is playing today with his friend down the street, who is "Downs." The other friend has another neurological issue. They are really wonderful kids, all of them just returned from different camps and find themselves in need of play on this hot summer day.

I find it disturbing that we have this trend, no less in "The Economist," where I suppose, the financial factor is critical to assessing human value -- the 'who costs more' issue. If you're special needs, you're in for trouble:


Pre-natal testing

Wanted: perfection

Jul 5th 2007 | PHOENIX
From The Economist print edition


Doctors try not to be sued over Down's syndrome babies

BUSINESS is brisk at Phoenix Perinatal Associates, a practice for high-risk pregnancies in Arizona. “We are solidly booked for months,” the receptionist sighs. Part of the rush comes from new guidelines published on January 2nd by the American College of Obstetricians and Gynaecologists (ACOG). These urge that all pregnant women, regardless of age, should be screened for babies with Down Syndrome.

Only women over 35 have a high risk of producing a Down Syndrome child. They have been screened through blood tests and ultrasound scans, then with amniocentesis or chorionic villus sampling (CVS), in which cells are taken from the developing embryo. Younger mums have been screened too, but in their second trimesters and only with blood tests. The new recommendation is that all women be screened at the 20th week, using the same tests; and many women are being pushed to have them earlier.

Many like the idea. The tests will be more accurate (amniocentesis has a 99% accuracy rate), and will give women more time to decide what to do. It makes sense to test under-35s: 80% of Down's syndrome babies are born to younger women, because their fertility rates are higher. But others find the changes unsettling, and with reason. Both amniocentesis and CVS tests carry a slight risk of miscarriage. And roughly 80% of women testing positive for Down's have abortions.

The new guidelines may also be triggered by the surge in lawsuits. In November an ACOG survey found that 65% of obstetrician-gynaecologists had reduced their practices for fear of liability claims. Clinic workers confirm that women who have imperfect babies tend to blame doctors. One nurse says her clinic can't afford the insurance to ward off the suits. “If more tests reduce our risks, then so be it.”

To advocates of the 350,000 Americans with Down's syndrome, all this sounds disturbing. Jon Colman, the chief operating officer at the National Down's syndrome Society (NDSS), notes that although many of them are born susceptible to heart problems, hearing loss and respiratory problems as well as mental retardation, most contribute to their families and communities and all are entitled to lead productive, independent lives. Down's children, many parents say, are delightful to bring up. And most do not die in their 20s, as Americans tend to assume, but can hope to live into their mid-50s.

Back in February, the NDSS challenged ACOG and others to make common cause with Down's syndrome organisations to give parents better information. They also urged doctors not to push expectant parents into prenatal testing, or towards abortion. But monitoring a more restrained approach might be tough. Many obstetricians are clearly overworked, with no time to offer more than suggestions and results. And although the guidelines describe these tests as options, many pregnant women are feeling badgered. Some are being asked six times or more whether they want an amniocentesis.

Asked what his goal was, one genetic counsellor in Phoenix replies: “To catch as many Down's babies” as he can. But with such eagerness, much could go wrong. Academic research suggests that around one in 100 40-year-olds produce Down's syndrome babies, but many Arizona clinics cite a figure as high as one in four. “There must be a regulated message,” says one 40-year-old new mum in Chandler. “And even then I would question it.”

I would love for every genetic counsellor to reassess "perfection" by reading my short story "The Perfect Child" in the book, Between Interruptions. Perfection and imperfection, are in the eyes of the beholder. I never had an amniocentesis, even though I was of the age to get one when I was carrying Adam. I chose not to. I chose to take whatever I got. I believe in the right to choose. I also believe in the dire need for education in terms of what joys, mixed in with those challenges we hear about much more often, can come with having special needs children. I can't imagine, as Krista Flint of The Canadian Down Syndrome Society has reported many times "a world without a Down syndrome person [or autistic person, or cerebral palsy person or whatever] in it."

I would love for our Autism Society of Ontario and Autism Society of Canada Executive Directors say the same thing for autistic people. As confidently. As boldly.

The Branding of Joy?

I got a bit of a kick out of this when I fell upon this site selling Joy of Autism T-shirts. as well as "Autism: it's not what you think" T-shirts. Looks like the sellers are based in Hamburg, Germany.

Ah well... as long as everyone looks upon all human beings as a joy, right?

Viva La Difference!

It's perhaps slowly becoming known that there is an alternative view that autistics are different, not aberrant. It is more than apparent, after meeting any autistic person, no matter how "profoundly disabled or autistic" one person subjectively decides them to be are, well, just human. Difference does not define who we are and how we should be treated (often as ill or deficient), but rather, differences might be viewed as what makes up humanity. Valuing difference can also lay a path in providing the services required to also equalize the "human field" while respecting and protecting the difference, the heritage, the being. The pitfall of social stigma of human difference -- race, gender, sexual orientation and disability -- might be eradicated with this emerging awareness of the over-homogenization of human appearance and behaviour.

In this Association for Psychological Science Presidential Symposium, Dr. Morton Ann Gernsbacher chairs, "Stigma from Science: Group Differences, Not Group Deficits" Viva La Difference, (not La Deficit). Joining her on the discussion of stigma in science, are Susan T. Fiske, APS Fellow Douglas L. Medin, APS Fellow James Jones and APS Fellow and Charter Member Gregory M. Herek:



"I'm not saying that people are politically biased and that their science is suspect," Fiske explained. "I'm saying that people pursue what they find interesting, and what people find interesting is informed by their values and their identities." Group differences, when used unjudiciously, "have the tendency to divide us and oversimplify," Fiske said. For one thing, differences assumed to exist between groups can become self-fulfilling (as in the phenomenon of "stereotype threat") and prescriptive. Even positive attributes can be damaging when assigned to a whole group._ -- Fiske.




"A big problem in research is you start with what you know, in your own culture." As a result, he said, it is easy to export our own presumptions to other cultures and other ethnicities and to minimize the differences within cultural/ethnic groups." -- Medin.



"If you allege that groups are inferior, and then you develop opportunities for them consistent with that inferiority, then of course they behave in ways you predict so you have a sort of scientific self-fulfilling prophecy." --Jones.



"On the subject of homosexuality, Sigmund Freud was ahead of his time, Herek said. Although he maintained that homosexuality reflected a less-than-optimal object choice, he did not consider it a sickness. But despite following the psychoanalytic paradigm through the first half of the century, the American psychiatric establishment departed from Freud on this matter and classified homosexuality as an illness. It was a classification based on assumptions and not on sound empirical data.

"The logical response was to cure it," Herek said, and numerous techniques were tried to alter people's sexual orientation -- all unsuccessful, some tragic." -- Herek.

Thanks to APS for putting on this presentation and The Autism Acceptance Project hopes to follow suit in 2008.

Our Walkabouts

This painting is of an Aboriginal Walkabout in Australia otherwise known as a "Songline."


Adam went to the doctor today -- calm and saying "ear, ear," leading the doctor's hand to the ears that seem to still bother him. We went there for a visit before our trip to Alaska as he contracted "swimmer's ear" with a blazing fever. The round of antibiotics had little effect -- his ears still bother him.

Usually, Adam has been terrified of getting his ears checked. Just approaching the doctor's office has usually sent Adam into tears. Yet, since being integrated into his quiet school and since being integrated at a camp, he is becoming more social, more aware -- being VERY aware of how others act around him. Obviously, he's an observational learner.

He's not the social butterfly of the group, but has what it takes to earn the nickname "Romeo" at camp as the girls have been fighting for his kisses, hugs and attention. Adam doesn't seem to mind. No, he's been beaming, in fact. Where close proximity and a swarm of people around him kissing him would have made him once meltdown, he is smiling and giggling away. He hung around the boys who came to visit us from Israel the other day, even though he can't find the words, "play with me." But "play with me," he is saying -- as clear as day.

Right, I was talking about his ears. I remember swimmer's ear. Adam comes by it honestly. He is the son of two former competitive swimmers and has come to love the water, advancing four levels at camp swim lessons. Shown once, maybe twice, he then launches on his own, dunking and jumping underwater and trying the "starfish" on his back. Adam wants to conquer the pool. I say this as I remember the days of pushing and prodding him as "expert" ABA therapists told me that he has to "learn how to learn" and that we had to reinforce everything because an autistic person had no intrinsic motivation. We never had to externally reinforce Adam, even though the therapists insisted that he had to be. No, it was when we said goodbye to ABA that Adam began to find his way, and I followed his lead and found the support he needed with Occupational Therapists, shadows and Speech Language Therapists. Adam had to be shown. He also needs to feel, experience -- experience through all the senses so that he can feel and learn, because learning has to have some meaning. Too often, if a child is presumed to be inattentive, they are denied the experiences. Lessons are confined to a table. For a child whose senses are alive, table-learning is non experiential. Table learning is usually based on an ability to perform and respond -- it has little to do with learning. It leaves big gaps in fact, as one needs meaning in order to become literate.

Yes, all that dunking in the water has its price, though. All that fun. I remember my own many swimmer's ear infections, and I hate to say that Adam needs the pus manually extracted. No more swimming for him -- at least not for a while and not without plugs.

So we play in our yard, we've had very little "therapy" but lots of activity. I once said, as the Canadian ABA'ers faulted me for doing so, that " a child has to be happy in order to learn." I remember educators saying that "learning isn't always fun." It sounded reasonable because learning was often made miserable for me. I was not good at math and was never given the time or belief that I would ever be good at it. For sure, the message was that I would always bad at it, the expectation was low, and it has stayed with me forever. There is absolutely no way that Adam could have learned as much as he has by following a pedantic ABA program -- one that would still have him reciting the names of animals because he can not necessarily "respond" in a typical way. It is true that learning is not always easy, but learning should never be married with the low expectation that is typically associated with autistic intelligence and "performance."

Adam blossoms and I look forward to the liberty of a non-ABA school -- a school that simply accepts Adam and happens to be the right setting for him at the moment. He is picking up math books, wants to write better (he has difficulty with his fine motor control), and he wants to gain those literacy skills as he enjoys lessons with mommy on categories and then go on jaunts to the grocery store to learn about "food." Or when we read and write stories about different kinds of "animals," after grandpa has taken dozens of photos from their trip to the zoo.

At the same time, Adam explores his yard, moving systematically from one bush to another, saying something to each, rustling our long ornamental grasses with his hands, getting his face really close. He walks to the pool and says something to it as well. He moves towards his image reflected in our glass door and takes steps backwards as if he's measuring the space.

"...repetitive, obsessive movement and interests," I remember being told. "They are dysfuntional. We have to make it functional." Again the famous last words of our ABA supervisors.

And yet, functional the behaviour is. Like a poetic mapping of his environment and a greeting of his familiar spaces. It reminds me of Dawn Prince Hughes' greeting of all the familiar trees and rooms in her house.

"I would silently acknowledge landmarks as the route unwound, whether they were the buildings or the hills or the flowers and trees. I had memorized everything. To me, each flower, tree, building and hill was a person, a being with its own personality and sense of agency. It I did not see it, it missed me and felt abandoned." (p. 19 of Songs of the Gorilla Nation).

Knowing her prose and meeting Dawn this year, I expect Adam is similar as we returned from Alaska and Adam greeting all our backyard plants. You call it odd? I call it an aesthetic: an ability to have one's surroundings pulsate with life within you so that you care for its very existence; an ability to know what it is to LIVE in our house, our neighbourhood. As I listened to This American Life on Mapping (Click here for This American Life), Adam's "repetitive movements" in his backyard are like a cartographical poetry. The interview asks rather pragmatically, "What do the patterns of leaf light tell you?" He asks as if the act is a meaningless waste of time. I would say that this kind of mapping is to know, to intimately know. To even know and understand the relationship of things in the environment to each other. What does it mean, in other words, to live?

Is that dysfuntional?

Is the Walbiri tribe in Australia? They "sing" there world into existence -- every stone and every tree. Or consider the Dream-tracking of the honey-ant, one of the totems of the Popanji:

"It was the Eternal Home, he explained, of the Honey-ant Ancestor at Tatata. And suddenly it was as though we could set the row on row of honey-ants, their bodies striped and gleaming, bursting with nectar in their cells beneath the roots of the mulga tree. We saw the ring of flame-red earth around the entrance to their nest, and the routes of their migration as they spread to other places.

'The circles,' Mrs. Lacey added helpfully, 'are honey-ant ceremonial centres. The "tubes", as you call them, are Dreaming-tracks.'

The American man was captivated. 'And we can go and look for these Dreaming-tracks? Out there, I mean? Like at Ayers Rock? Some place like that?'

'They can,' she said. 'You can't.'

'You mean they're invisible?'

'To you. Not to them.'

'Then where are they?'

'Everywhere,' she said. 'For all I know there's a Dreaming-track running right through the middle of my shop.'

'Spooky,' the wife giggled.

'And only they can see it?'

'Or sing it,' Mrs. Lacey said. 'You can't have a track without a song.'

'And these tracks run every place?' the man asked. 'All over Australia?'

'Yes,' said Mrs. Lacey, sighing with satisfaction at having found a catchy phrase. 'The song and the land are one.'" (from Bruce Chatwin's, The Songlines, pp. 27-28)

Adam sings as he meanders through are yard on these hot summer days. He mumbles words to them like a mutual secret. He does this several times until he moves on to something else, butterflies fluttering above his head.

Perhaps the "pragmatists" of our world need some lessons in the behaviours of various cultures. Pragmatism kills art. It kills creativity and perhaps even the lifeblood of "different" kinds of people or species. It lives for some ubiquitous "functionality," and even characterizes "autism acceptance" as a kind of "denial" of any intrinsic difficulty or disability. One must measure, however, how much of the difficulty or the disability arises from a majority that does not see the Dreaming-tracks, or the poetry of the environment -- that otherwise rushes from one task to another ever so "pragmatically" so to never, or rarely, see or feel or value little, if anything, at all.

Hillary Clinton: Autism "Prevention" and Political Opportunism

Don't get me wrong. I rather like Hillary Clinton. I am in favour of a female or a African-American President. What I am not in favour of is using autism "prevention" -- aka another "war on autism" as a political platform in order to get votes. Christschool's videos are provocative -- as they should be. Below, is another good version of his ability to illustrate the problems with using "epidemic" to get votes, money or anything of the like. If I lived in America, Hillary would lose my vote for her poorly researched stance on autism. Indeed, we are not united with Autism Speaks. We are not united with those who support factless facts on a non-existent epidemic. Adam is not a misery or an epidemic, even if there are others who insist he must be. No, he is a wonderful, joyful, exuberant little boy who is now growing and coming into his own.

So, no thanks, Hillary. We don't need another autism vigilante.

Lazy Days for Language

Adam is back with his parents from his trip to Alaska. We visited Glacier Bay and College Fjiords and more. We saw Humpback and Orca Whales jump out of the water, bald eagles perched atop of trees watching us carefully, sea otters trailing sea paths, their heads occasionally poking out of the water. Glaciers plunged large chunks of ice into the jade colour sea, pieces scattering the water landscape so that Al Gore's global warming theories seemed more real than ever. We travelled on the goldrush tram across the treacherous sides of moutains -- railway builders said a railroad could never be built there. The impossible made possible only by someone who knew railroad construction and the terrain.

Adam was a trooper and I am told by Henry that even on the worst travelling day at the end of our Alaskan cruise -- a twelve hour jaunt that began at five in the morning after a bad night's sleep, Adam was still better than the rest of his other kids. Adam ate in the dining room, he played in the play room with other children, he ate well and as I always predict now in these wonderful lazy days of summer that I now have began to treasure rather than fret (that no work is being done), he began to talk a whole lot more. He said things like, "I'm at the airport," when we were waiting in line to check in our luggage. He said "go away!" when he was frustrated with me on the airplane. He said, "I like this one," as clear as day when his friend B, (we were travelling with another family), handed him one of those balls that expand and contract. He demanded "breakfast" upon waking and specific foods. He yelled "I want to go!" at the top of his lungs on that twelve hour travel day near the end of our jaunt.

Now, anyone who doesn't know Adam would have thought him to be a typical four or five-year-old, and maybe would be a little puzzled when he didn't answer their questions quickly enough. Even though I don't want anyone to think that talking is the be-all and end-all for disabled kids, I must say that it is exciting for me to experience. It would be just as exciting to see my child use sign language, use a device -- anything that would deliberately communicate with me. In fact, when Adam grabs my hand and leads me to what he wants when he can't find the words, it is just as exciting. He is a strong-willed little boy who wants control over his life. He is growing up. If I do too much for him now, he gets ticked off with me. He is at the age when he wants to try many things on his own, and little enough to want to come to mommy when he really wants me to take care of him.

So today I am just a mom who is once again beaming with pride at her son. I am proud that he tries so hard, that he is a real trooper when he travels -- enduring four hour tours without complaint now busily occupying himself with games when he becomes bored.

There was a day when everyone said this wouldn't really happen -- that autistic people always melt down, have real trouble with transitions, who, if they didn't talk by three, would never talk at all, and who, well, just wouldn't be able to cope or understand the world around them. It's not to say that it doesn't happen for many autistic people. When travelling with Adam, I don't see the disparity, just a few little differences as he grows. I also think that disparity is in the eyes of the beholder. I don't know what the future will hold, and it's no point worrying too much about it. The joy we find is letting the days unfold, watching Adam develop and become the person he is meant to be, and taking time out of the everyday to see that language develops when our kids are allowed to relax.