Estée Klar » Contributions to Society

Part of the Network of Give and Take

Estee — Sun, 18 Dec 2011 17:12:34 +0000

It has occured to me that Adam gives back. He’s not the only one in need of assistance. He and I, and all of us, are part of a network of give and take.

For many reasons this Hannukah and Christmas (or Fesitivus for the rest of us), Adam and I will be volunteering to assist families in need of food in Toronto.

Adam is affable, people love him, he puts smiles on people’s faces. More than this, he’s systematic and likes to contribute. Giving out food will be a constructive work for a nine-year-old who will be taking on his first “job.” I believe that we have to let our children learn and meet others who are part of the G&T network I referred to above. It equalizes us.

One mom the other day, of a younger autistic child, said she was self-conscious of going out with her child. I said that we as autistic families cannot ever stop going out and being part of the world. If we do, no one will understand us and there will be nothing available for autistic people. I thought this is a way for Adam to begin learning that he is valued and needed, as an autistic person.

Not only do we go out all the time and are part of our community, but Adam is not just on the receiving end of services. He is able to give back in so many ways.

Why Every Minute Is Not Therapy (or a short case for why it shouldn’t be)

Estee — Thu, 08 Sep 2011 23:19:04 +0000

The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They had thought with some reason that there is no more dreadful punishment than futile and hopeless labor.

I heard this term used by someone today. It is often used in ABA-speak — that every minute of every day must be a form of “therapy” for the autistic child. Some believe this is necessary because there is a belief that autistic children are not learning unless they are doing it in a way that that we can understand…measurable. This made me think of Sisyphus and the futile attempts we make in trying to normalize an autistic person.

The truth is, we take comfort in measures. Yet as I wrote in my essay/presentation The Mismeasure of Autism, we cannot hold autistic people up against the same measures as we do of people with typical people. Not all brains are wired in the same way.

For example, women have quickly discovered that when we compare ourselves to men in the workplace, or try to behave like men, we fail. In pretending to be like men, we can undergo a great deal of stress because we are working against our nature. When we are valued for the manner in which we can accomplish the same tasks as men, but in our own way, we discover that our differences can be beneficial to the workplace. Women to men are as autistic people to neurotypical ones: different and equal.

I was reminded of the contributions of those who are different from the film titled Journey Into Dyslexia, which profiles accomplished people with dyslexia. The trailer can be seen by clicking here.

During the film, dyslexic individuals describe their trauma with the education system — how no one appreciated the unique wiring of their brain and tried to make the dyslexic students learn like typical ones. I was so saddened by the life-long adverse effects this had on them.

In another segment, a researcher discusses how dyslexic individuals have unique abilities and pattern recognition and explain that our world would not be the same without such thinkers. This reminded me of the research being done which shows advanced perceptual ability in autistic individuals of all functioning levels.

It should be said that in the film about dyslexia, individuals do not appear disabled. In autism, this isn’t always the case. While some individuals do not physically appear different, others are distiguishable by their various eye-gaze, facial expression, gait and idiosyncratic body movements (which serve most often to regulate or feel the body in space), referred to as self-stimulatory behaviour. I thought to myself that in our (still) disabled-adverse society, it is easier to accept dyslexic people, that is, sadly easier to accept people who do not have any obvious appearance of disability. Yet, dyslexics did not always have the same recognition and status. Dyslexic students were labeled and marginalized — called stupid — and not much was expected from them in the future.

Time changed that. Studies of the brain and achievements and activism by dyslexic individuals changed it too. So I had to wonder, as I always do when I watch such movies, why it is taking so long for the autistic community to receive such recognition and access? There are scientific studies that demonstrate advanced perceptual abilities, patterning skills in autistic individuals despite the labels of “functioning levels.” There is anecdotal evidence that autistic individuals are exceptional employees — reliable, honest, able to do detailed and repetitive work, and perhaps even able to design world-renowned facilities (think Temple Grandin).

Still, we as an autistic community (meaning parents, researchers and autistic people) tend to discount the mounting evidence. While I don’t wish to go into yet another lengthy about high and low functioning labels, but I will reiterate that they are unreliable in determining intelligence levels. Not all intelligences can be measured the same way, as demonstrated by many of the neurological differences which now have labels out there. This is also explained brilliantly in the film.

We can learn from our fellow disability communities. We can turn to ones, like the dyslexic community, in learning how to advocate for autistic individuals. We can definitely acknowledge that it is natural for the human speicies to have differently-wired brains and that these “different” brains are integral to the survival of our speicies (watch the movie for an advanced argument on that point).

That is the reason why the idea that “every minute should be therapy” for the autistic person is a form of discrimination. Underneath the premise is the idea that autistic people need to learn and act like those who are different from them. I cannot imagine the anguish of that experience, and every day I try to feel what Adam must have to go through and what he may come to say of it when he grows older.

Before the hyper-programmed generation (that is, my generation), we had many bored moments when our parents let us figure out what to do on our own. We stared at clouds, talked to ourselves and created laboratories out of our mother’s cosmetic bottles and the contents therein. When I look back, I remember creating many imaginary worlds. Adam’s chatter is considered abnormal to many behaviourists, although I’ve never stopped him. I’ve now learned how valuable that self-chatter is to autistic children for language acquisition.

Compare the way we let typical children play to the existence of the autistic child today. It is said that autistic children can’t learn on their own, let alone imagine, without our intervention. Autistic free time is not valued. Autistic nature is not valued. Autistic learning is not valued and the autistic person is more often than not, underestimated.

I tend to use the story of how Adam taught himself how to read and count in an argument such as this. A more recent example I would use is how he has taught himself how to search for what he wants on the computer. You see, those are the things we see and measure, but I wouldn’t be able to determine how he came to do it. I can’t measure the exact process he went through. I can wait until he is able to explain some of it to me, unscientifically maybe, and I am certain now that he will as his verbal and typing skills catapulted again this summer along with his long days in the fresh air.

If I had turned each and every one of Adam’s minutes — nay existence — into “therapy,” not only would I become completely exhausted and dismayed, but I’m quite certain that Adam would not be has happy and as well adjusted as any young autistic individual can wish to be. He will have his complaints, I am certain. He is up against so much more than I have ever been.

I am thankful for my attitude of late and for the balanced approach that time and experience has given us. It is not always easy to maintain this attitude consistently in our community where autistic children are not taught to their needs or potential, let alone accepted into many schools and taught well. For many autism parents, it is the fear of the future that is the driving force behind the idea that every moment needs to be a therapeutic one. I completely understand that fear.

It is in these very moments when we need to turn to autistic adults and call upon all of our autism societies to spotlight the achievements of autistic individuals of all functioning levels, and their contributions to society. In autism we have Temple Grandin, Vernon Smith (Nobel Prize Winner), Stephen Wiltshire, Daniel Tammet, Donna Williams, Michelle Dawson, Matt Savage, Amanda Baggs, Larry Bissonnette, and so many more autistic contributors. In so many of their stories, we have heard how they have learned and achieved by virtue of their autistic brains and societal accommodation, not from minute-by-minute therapy.

We should do everything to celebrate the achievements of our comrades, as this will enable better services and accommodations for the next generation of autistic people to contribute. If we do not stand up for our own community, what chances will our children have to prove themselves? What chances for acceptance?

Everyone has something to contribute.

About Control

Estee — Wed, 26 Jan 2011 23:37:14 +0000

Yesterday, The Globe and Mail published, For A Child, It’s All About Control. The premise of the study, conducted by researchers in New Zealand followed 1,000 children for more than thirty years. The findings, published in the Proceedings of The National Academy of Sciences stated that “those children who demonstrated strong self control skills as early as age three were less likely to abuse drugs, and develop health problems, experience financial difficulties or be convicted of a crime.” The ability to control one’s own behaviour is an indication, therefore, of future success. I guess that makes most of us the doomed portion of the population.

I’m not just writing this because I felt like I was reading a paper in 1900, not 2011. I’m writing because I have an autistic child, where the controversy in his way of being is primarily described as behavioural — difficulties with attention, focus and impulse control. Children diagnosed with ADHD, ADD share similar impulse control “issues.”

It’s an odd time we live in. We diagnose every possible human way of being under the sun, while also being able to appreciate, paradoxcally, the creative contributions and potential of people with, as we say, “different kinds of minds.” Despite all our best efforts to use medications to control behavioural issues, the individuals we medicate are often incredibly able, talented, and have been, in fact, insanely successful. An official ADHD website proudly lists successful people with the disorder, the list including Albert Einstein. And this list. In keeping with funny little lists, here’s one that cites some successful autistic people. And another one.

Most of us have heard and read about Donald Treffert’s work in giftedness and autism, although not every autistic person possesses exeptional gifts (even though everyone is exceptional). The real issue seems not to be that the ability to exercise self-control makes us more successful, but in how we learn to work within the frameworks we’ve got. The most heralded people of our culture are the ones who are able to think out of the box; in other words, differently.

Another issue is one of pedagogy. The study insinuates, for me anyway, that all children should be alike: focussed, sitting at their desks and compliant with their teacher. A child like Adam is a sure candidate then, to be banned from schools that use these criteria as a series of prerequisites. Sure, we all have to learn the rules, but the rules also have to bend for the accommodation of individuals so that they can learn. One example is having children move throughout their day in order to think. As physical programming gets slashed and Canadians, in a recent CBC report, are getting fatter, it might be no wonder how children have difficulty concentrating. There are many different ways to learn. Most autistic chidlren need sensory stimulation throughout their day, similarly, to be able to focus.

“Self-control is a vital skill for scanning the horizon to be prepared for what might happen to you, for envisaging your own future possibilities, for planning ahead to get where you want to go, for controlling your temper when life frustrates you,” says Terrie Moffitt from Duke University, quoted in the article. Really? Can we truly plan ahead? I mean, a few years under my belt and I’ve been stimied over and over at the universal joke: that life never ends up the way we plan. Nevertheless, we’re all supposed to have a good one. While it’s not the entire point of my post here, some of the reasons cited as necessary for being in control of oneself in the study seem a little silly.

How many of us have had behavioural issues in our lifetime, or a real diagnosis effecting our ability to control our impulses? Have the researchers considered the contributions made to our society by individuals who have severe difficulties with it? How many of us might have to use many accommodations throughout our day in order to be “successful” — the very word raising many other questions on what success really means?

“You’re training people to think about long-term consequences of their behaviour,” Professor Piquero was quoted.

Indeed.

Put The Autism Hub Back Online

Estee — Wed, 12 May 2010 18:47:43 +0000

I am really disappointed that the Autism Hub is on “hiatus.” A lot of people were referred to the Hub around the world and it is an extremely important gathering of blogs in support of autistic people. I remember when the Hub was started in and around 2005 by Kevin Leitch and what an undertaking that was. The Hub, since, has been explored at universities world-wide and on television.

My vote is to get it back online as quickly as possible. How can we help to do that?

It’s Just That Simple

Estee — Tue, 02 Mar 2010 14:36:28 +0000

I love this video. It’s just that simple. “You get rid of the autism gene and you get rid of Mozart, Einstein, Silicon Valley…” I love how Temple advocates and it’s this kind of advocacy that assists us in putting ourselves, as neurotypical parents and teachers and therapists, with outrageous expectations, under a much needed spotlight. Beyond listening to her story about “gifts” is an opportunity to consider the disconnect we create when we try to “fix the problem.”

Lorraine Kerwood: “I didn’t perceive myself intelligent in any way”

Estee — Wed, 25 Nov 2009 02:47:48 +0000

Lorraine came to me by way of my own website, which attests to the power of the Internet in making connections these days. Reviewing her own work with recycling computers, and how she came to regard herself by way of other people’s view of her, I of course cannot help but think about autistic people and what a “contribution to society” can look like:

For people who view obsessions as negative, this video is another story of how our “obsessions” are pathways to creativity and invention. Visit the Next Step Recycling website.