Thinking Bloggers 2

Thank you Asperger Square 8 and Whitterer on Autism for tagging me for the Thinking Bloggers Award.

These are the official rules for participation:

1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think,
2. Link to "this" post so that people can easily find the exact origin of the meme,
3. Optional: Proudly display the "Thinking Blogger Award" with a link to the post that you wrote.


Since Kyra of This Mom mentioned me last, I've been thinking about which bloggers have made a difference in our lives. Be it thinking or FEELING, autism blogging for me, is about instigating a change of attitude -- a change in the way we view and treat autistic people so that our children can lead full lives in society.

My thinking most definitely comes from the way I feel about Adam and the way we have experienced autism through clinicians, doctors, therapists. I have gone through self-doubt and confusion and then a growing acceptance of how we WANT to live the rest of our lives, despite the disennt and chatter in the autism world. In the end, I also come to see that, many of us simply want the same things: we want every opportunity for our autistic children and we want to be happy. The difference lies in how we go about that change: in changing the person or the environment. And, is there a compromise? Do we all try to mold ourselves to some degree and when do we feel ready to say that fitting in just doesn't matter as much as we think it does? We have a social issues that we need to keep talking about which is: is changing a person to "fit in," right? Is it just?

I got this the other day when Dawn Prince Hughes just said "f-ck it" on stage during her conference speech. She had to say it in regards to how others have viewed her or wanted her "to behave" in order to live HER life. When we let others pressure us too much, we give pieces of ourselves away until there is nothing left. I don't believe that any of us want our children to feel this way.

So, with this "meme" you make me think about thinking. While I would like to be a better thinker, I think it shows when you think over experience. A marriage of the two is what I hope to achieve one day -- an unmasking of my Self in order to connect with others to achieve a more empathetic society -- in this case regarding disability. I like what Stephen Covey had to say about thinking:

I'm convinced that we can write and live our own scripts more than most people will acknowledge. I also know the price that must be paid. It's a real struggle to do it. It requires visualization and affirmation. It involves living a life of integrity, starting with making and keeping promises, until the whole human personality -- the senses, the thinking, the feeling, and the intuition -- are ultimately integrated and harmonized.

Wow. I don't think I've managed to get that far yet, but I'm committed to trying.

Now it's my turn to meme." Here goes, but like this video I just made, I don't think I could EVER make a thorough enough list of all you people and bloggers I have come to admire so much:

Autism Diva -- She may not remember, but before I ever became a blogger, I emailed her. Autism Diva is the most informative, entertaining and thorough blog about autism out there. She is thinking, feeling and unabashedly wry.

Autism Vox Can anyone keep up with Kristina Chew? I enjoy her essays and her daily thoughts on the latest autism news. I feel an affinity with Kristina (also one of the first autism blogs I ever encountered back in 2005), with her love of literature. I always need to check in with Kristina to read her take on autism lit or art as we often end up writing reviews on top of one another!!


Kathleen Seidel of Neurodiversity.com. There is never a shortage of information on Kathleen's site. She is a woman with the incredible brain. I still don't think I've gotten through all of her material on that site. She is a pillar of the autism acceptance/rights movement, in my opinion.


Kevin Leitch I don't know if most people know about this other pillar of the autism acceptance movement. Kevin, savvy in many areas, blows me away with his research, knowledge, love and generousity. He is, as we say in the Jewish community, a real Mensch. He has helped The Autism Acceptance Project in so many ways and I just can't proclaim my gratitude often enough.


This Mom I've never met Kyra (yet), but there are days when I just wanna hug her. There is never a moment when I don't belly laugh at her butt jokes, or am in awe of her ability to unmask herself. Unmasking is what makes writing great, and I expect we will see a book written by Kyra (I hope) one day. She is not only funny, but a poetic writer right along with her son "Fluffy."

But it's not fair that I have to stop there. I love all of the Autism Hub bloggers and I would give the award if I could to everyone on there. Thank you all for inspiring me so much. What a great community we are growing!!


“A man is but the product of his thoughts -- what he thinks, he becomes.” --Mahatma Gandi

I Believe

There is something that I've been made aware of lately: at the conference I spoke at last week, a gentleman with brain damage noted after my presentation that I am proud. He meant it in the sense that he too is proud and that what shines when I talk about Adam and autism is not shame, but pride. He is right. There is nothing I'm NOT proud about when it comes to him. It's that heart-swelling thing I've got, and I hope it's contagious. I look at pictures and despite the fact that I am far from perfect and that there has been a lot of pain in my life, like there is in most of our lives, there is just so much to be happy about. Perhaps it is just sheer will on my part -- not out of some depression or delusion (I am not associating one with the other by the way) -- but this determination that has enabled me to well, BELIEVE in him:

RESPECT: A Homage

If only I could put everyone in this little homage. The people I've met so far in Canada, do not know who you are:

What Kind Of World Do We Want

My video response to whatkindofworlddoyouwant.com



Credits to Asperger Square 8, autistics.org, Autism Speaks: Don't Speak for Me Petition and Jonathan Lerman.

Not Everyone Wants to Be Cured

In Snowcake, Weaver's recent movie where she plays an autistic woman, she comments on finding her "inner autism." In the following article from San Diego, she is interviewed and Neurodiversity.com, Left Brain/Right Brain, Autism Diva and our very own The Autism Acceptance Project, www.taaproject.com are mentioned in the article as important sites in support of autism acceptance. Weaver did the above public service announcement with GRASP.

Last night, I spend time with Dawn Prince Hughes who also presented at The Come To Your Senses Conference in Toronto where I presented the talk you can also see on video from MIT. She thanked me for presenting there, but what was so apparent was the ease of connection between us. This is a person, very much like myself, who understands the frenzy of how we behave socially, with masks and walls, and we both have an incredible need to slow down and really connect. When you are with Dawn, that's what you are feel (if you are willing).

I am really glad to see a celebrity align themselves not with an idea, a cure as it were, but with the people this means so much to. This is, after all, about living.

By James Hebert
UNION-TRIBUNE ARTS WRITER
May 25, 2007

She set out to learn about life with autism, and after a year spent with people across the vast spectrum of that condition, Sigourney Weaver found she hardly needed to step out of her own two shoes.

“What I ended up doing, in retrospect, was finding the autistic person in myself,” says the actress, who plays a middle-aged mom with autism in the new movie “Snow Cake.”

“God knows it's there,” Weaver adds with a deep, warm laugh. “I mean, that's one thing you see very quickly, is we're all on the spectrum. We all have different ways of stabilizing ourselves.”

“Snow Cake,” which opens today at Landmark's Hillcrest Cinemas, arrives at a time of exploding awareness about autism spectrum disorders, the catch-all term for a range of conditions that share (to varying degrees) difficulties in the areas of speech, social interaction and repetitive behaviors.

It also comes as advocates for the autistic – including some autistic people themselves – are raising their voices in a plea for respect and acceptance.

Their message is similar to the point Weaver makes: that autism is part of the continuum of human neurology, not some separate category of existence. That it is, in essence, a difference rather than a disease, although its consequences for those affected and their families can be profound.

It can be a hard point to get across when so many mysteries swirl around the subject, and when the main message the public hears about autism is how common its diagnosis has become. The incidence of autism spectrum disorders among U.S. children is thought to be as high as 1 in 150 now; the ratio has risen in recent years as understanding of what constitutes autism has broadened.

Weaver, whose memorable film roles over the years range from brave space warrior (the “Alien” series) to crusading naturalist (“Gorillas in the Mist”) to monstrous boss (“Working Girl”), says spending time with autistic people in researching “Snow Cake” was eye-opening in ways she couldn't have imagined.

“I thought I knew a lot, but really, I knew less than nothing,” she says. “And I felt so humbled, both by the people I met on the spectrum, and the people who devote themselves to bringing out their talents and successes, and improving their quality of life – parents, friends, teachers.”

One of the most startling things she learned was how variable the condition is; there are as many expressions of autism as there are autistic people, which means there's no single way to address it – therapeutically or artistically.

“Some people have said, 'Well, my relative with autism doesn't have any of these capabilities,' ” Weaver acknowledges, speaking of those who have seen the film. “But this movie is not about autism, and we were not trying to present the (prototypical) autistic person.

“This is about a man who's thrown together with these two different women, and Linda (Weaver's character) happens to be autistic. And he learns from her, as she does from him. I think interaction – for people who don't want interaction – is one of the messages of the film. Which is: It's good for us to mix it up with each other.”

In the film, Linda is able to live on her own and hold a job stocking store shelves. She speaks capably – a struggle for many with autism – but has trouble deciphering the moods and motives of the people around her.

She winds up playing reluctant host to Alex (Alan Rickman), a stranger in whose car Linda's daughter died during a traffic accident. Alex also forms a bond with Maggie, a loner who is Linda's neighbor.

Angela Pell, the British writer who scripted “Snow Cake,” was inspired by her own autistic son, though his story is far different from Linda's.

Nine-year-old Johnny is “at the other extreme of the spectrum,” Pell says. “He doesn't have a huge amount of language. If I went to see 'Snow Cake,' I'd probably come out and say, 'Well, actually, that's nothing like my son.'

“But what I was trying to do is just give a general feel of what it's like to learn to live with and love somebody who's rather extraordinary, really. And there are a few other themes in there, just generally about acceptance, really.”

Pell recalls that when Johnny was first diagnosed, “we had all these leaflets and books showing pictures of children on their own, with tears in their eyes. All these very negative images.”

“And although it was quite challenging with our son to start with, it's not our experience that it's been totally negative. Our son is one of the happiest people I've ever met, and he brings a lot of joy to a lot of people.”

Advocating for acceptance of those who are different might not seem particularly controversial, but “it's quite a minefield, actually,” says Pell. And some of those mines are inscribed with the word “cure.”

Those in what's loosely known as the neurodiversity movement say talk of a cure is insulting and demeaning because it suggests autistic people are broken or damaged or otherwise need to be “fixed.” They also argue that autism is an inextricable part of who the person is and cannot be removed like a bad tooth.

(The movement has a strong Web presence at such sites as Neurodiversity.com, Left Brain/Right Brain, Autism Diva and The Autism Acceptance Project, www.taaproject.com.)

Some also voice concerns that dangling the promise of a cure can make desperate families susceptible to questionable therapies.

Groups that have sprung up to fund research into a possible cure counter that it's cruel not to try to help those with autism – although nothing in the neurodiversity approach argues against taking steps to improve quality of life.

Quite apart from that debate, though, Weaver sees a more simple and basic need for understanding and respect.

“I don't like being in a world where I don't see people with different problems,” she says. “I think it enriches our world, and it hopefully will enrich their world, to be able to come and go without our shrinking in fear and ignorance. Which is all it is.”

MY MIT TALK NOW FOR VIEWING

You can view my talk at MIT HERE.

I gave this same talk at the Come To Your Senses today. It was full unlike at MIT where they were in the middle of exame week. I also met Dawn Prince Hughes who gave me a big hug. She said, "imagine where I would be if someone decided to cure me."

New Minds, New Bodies, New Identities

You can now watch the h2O conference at MIT here. . Consider Oliver Sack's comment on the blind man who was given sight, and thus became "more disabled."

Autistic Teachers, Scientists, Consultants Every Day

As many of you know, Amanda Baggs has been working with MIT on their assitive devices for autism. Michelle Dawson is a researcher at the University of Montreal. Dr. Morton Ann Gernsbacher so eloquently wrote about the meaning of participation in this article, The True Meaning of Research Participation. But autistic and Aspergers teachers? Policy makers? Board members and leaders? Introducing, Carole Ann MacDonald who is a teacher with Aspergers Syndrome in Brampton. The National Post:

It is the middle of a lesson in the classroom at Greenbriar Public School in Brampton, and the boys, aged 12 to 14, take turns jumping on the trampoline in between listening to their teacher.

"It releases tension," teacher Carole Ann MacDonald says matter-of-factly, as she surveys a classroom that also includes terrariums, a beanbag chair, a sectional couch and, most importantly, three teaching assistants and a teacher for just nine students.

Ms. MacDonald knows, perhaps more than most, the need for an autistic child to have a release from the structure of a school day.

When she was a bit younger than these students, she was labelled "retarded" and severely disabled, and required a team of private tutors to get her through school. It was not until her final year of teacher's college, three years ago, that she was diagnosed with Asperger's, a form of autism.

I am excited about reading as Adam is still young and his prospects of being taught by people who might really understand him are becoming a reality. I was a little disturbed by this next judgmental paragraph, as I certainly wouldn't mind hand-flapping or "autistic behaviours" from any of his teachers, so long as they knew how to teach:

Ms. MacDonald is considered by autism experts such as Dr. Kevin Stoddart to be among the highest functioning cases of Asperger's. She does not shake hands obsessively or have any noticeable physical tics. Her unusualness manifests itself in a way that is difficult to pinpoint.

In the classroom, where other teachers might give harsh words when students misbehave -- the boys on this particular day were eating, pacing the room and talking out of turn --Ms. MacDonald laughs.

The Autism Acceptance Project support group, lead by four autistic adults (so far -- more are welcome!), has adults with autism, Aspergers and are all so very unique as individuals as are their experiences.

The possibilities abound.

Thinking Bloggers

This will be a rambling post. Contrary to the title, it is not "thinking" about much, really. It is not an essay with a point. It is a post reflecting the state of the world as we feel it today.

I want to thank This Mom for mentioning me in her post today. I've recently noticed this Thinking Blogger nomination memes going on, and I happen-stanced upon Kyra's post today.

As Kyra noted, there are too many wonderful bloggers out there and so much to read. I don't think I have the time to read everyone I would like to, particularly how I am trying to write a lot more these days on other topics elsewhere.

Yesterday, I spoke a little about Adam and how well I think he's doing. I have been thinking about all the fretting we have done, and how at peace we are these days. Is it spring? Sunshine? Summer quickly approaching? The great school we now attend where Adam is integrated and happy? The new approach we take at home in respecting Adam , his innate intelligence and building learning programs that really address his learning style?

I reflect that it has taken us nearly four years to get to this point -- dealing with therapists coming from ABA backgrounds and keeping the ones who really want to learn how to teach -- nearly fighting with some of them about Adam's needs and HOW to teach him respectfully. We need this combination of background and flexibility when teaching kids. And then, at Adam's school, there is no background but the right method for his needs. (I will not disclose his school for safety and privacy reasons).

Yes I Can! nursery school lost their funding for summer camps yesterday. I am very sad about that as Adam used to attend that camp when he was a very little guy. Adam attended Yes I Can! for preschool and camp. While he outgrew their teaching style, it was a warm welcoming place when he was very little. This was where he learned how to paint, where he wore his first Halloween costume. Janet MacDougall really cared about our Adam. Many camps have had funding cuts -- the funding goes towards camp counselors -- special needs camps were not specifically cut. And Yes I Can! was not just for special needs kids. It was for all kinds of kids. This is why we loved it there too -- a marriage between understanding the special needs child and inclusion. The Toronto Star reported that the government said that Yes I Can! scored poorly on quality of service. I don't know if anything has changed because it has been three years since we've attended Yes I Can! But our early memories are positive, and then we had to move on.

Apparently, the government wishes to direct funds to counselors with disabilities. The Toronto Star reported:

Program funding gives priority to organizations in high unemployment areas as well as those that hire students "with disabilities, aboriginal students, and students who are visible minorities," Lesley Harmer said in an email. "It is unfortunate that every year there are always more applications for funding than money available," she said.


There is nothing wrong with that goal. The places I want for Adam include:

-access and inclusion;
-camps that take shadows or can provide them;
-affordability (some families should receive financial support);
-understanding autism outside of the behavioural box;

There is no reason why camps should limit access to kids with special needs, or not have special needs counselors.

Anyway, as I meander down the contented path the past few weeks, I will sit down and write my book, a couple of essays. We look forward to camp, to some lazy summer days, and just, well...rambling along.

TAAProject's First Support Group

Last night, TAAProject hosted the first support group for non autistics, lead by four autistic adults -- all very different -- from Aspergers diagnosis to autism diagnosis. The group went so well that it wants to convene every two weeks instead of every month for two hours at a time. There is one thing I want to share that speaks to comments on "early intervention."

All of the members were recipients of many "treatments," and physical or verbal abuse from their parents, and general exclusion and misunderstanding by society at large. Michael Moon said one thing that was very important, I think. He was diagnosed with autism: "What was considered my weakness turned into my strengths. My love of playing with sand turned into photography. My need to make noise turned into playing music. My need to move turned into dance." To see for yourself, check out the gallery at The Autism Acceptance Project website (www.taaproject.com) or link at the left side bar.

An overwhelming response from all autistic members of the group noted how important it is to focus on strengths -- that constant focusing on "appropriateness" is so damaging to self-esteem.

As the years pass, it becomes less difficult to break away from the limiting boxes that many interventionists put us and our kids into. Instead, the people who work with us are learning about the importance of following Adam's lead and respecting him. Adam works everyday, but we don't focus on the negative or what he isn't. We focus on what he is. And you know what, we are beginning to fly at a rate that we never did before. I believe that there is room for working with autistic kids for sure, but in a way that we do not typically think about which is valuing our kids and the way they learn.

Belated Mother's Day Wish

A belated mother's day wish to all:

My New Book

Well, it's my first piece published by Key Porter Books. You can pre-order here at Amazon, edited by Cori Howard and titled: Between Interruptions: Thirty Women Tell the Truth About Motherhood*

The other contributors (all Canadians) are Lisa Bendall, Randi Chapnik Myers, Christy Ann Conlin, Leanne Delap, Monika Deol, Debleka Guin, Marina Jimenez, Alison Kelly, Chantal Kreviazuk, Joy Kogawa, Deidre Kogawa-Canute, Jen Lawrence, Mary Lynk, Rachel Mate, Chandra Mayor, Ami McKay, Carrie-Anne Moss, Susan Olding, Sheree-Lee Olson, Katrina Onstad, Elizabeth Renzetti, Harmony Rice, Rachel Rose, Denise Ryan, Cristina Sampang, Carol Shaben, Joanna Streetly, Dorothy Woodend, and Jamie Zeppa.

My other book is in the making.

Are We Blind?

I have a little something I’m working on for all the “autism moms” today, but it’s not quite ready – the reason I haven’t been blogging this week is largely because I have to figure out how to use a new MAC computer which I got for the purposes of making easier movies and presentations. Huh. I knew the salesperson made it look too easy. Anything that looks or seems easy, is never easy. My father was right.

What an interesting week it has been: I spoke at MIT this week and they will be loading my presentation into You Tube. I met Amanda Baggs there and Amanda is at MIT all week now. I commend Rosalind Picard and Rana Kaliouby for understanding the importance of adding autistics to their research teams. Rana said to me “knowing what we know now, we would teach this course differently.” In other words, with a growing understanding of the social and ethical issues surrounding autism (rather than the medicalized accounts of autism we are hearing much too often), they would not teach autism and technology out of the proverbial text books. What a breath of fresh air. Some people who actually care what autistics think. I asked other scientists in the room to consider the same, and to talk to Autism Speaks and like organizations about their marketing tactics that steam roll over the real issues, in other words, how autistic people (and parents like myself), feel about manipulating fear and despair for research funds.

And then my other mother’s day surprises: two articles in the New York Times today that are must-reads: Genetic Testing + Abortion = ??? and then in Sunday Styles an article on the disability community called Clearly, Frankly, Unabashedly Disabled: “This is who I am. If you have a problem with it, that’s your problem.” Are we finally entering an era (in the US anyway, as Canadian press are very lame so far in addressing the issues) of discussing prenatal screening and, uh, ethics? Consider Sarahlynn Lester’s comment, a thirty-two-year-old supporter of abortion rights, “I thought it would be morally wrong to have an abortion for a child that had a genetic disability.” In other words, it used to be “easy” to stand on the side of the pro choice movement. But now that technologies have made the stakes higher, our knowledge and control over life greater, the choice is not so easy. Do we have the right to choose between certain kinds of children?

“How much choice do you really want to give?” asks Arthur Caplan in the article who is chairman of the department of medical ethics at the University of Pennsylvania School of Medicine. “That’s the challenge of prenatal testing to pro-choicers.”


I’ve written about this many times. I went into that genetic counselor’s office when I was pregnant with Adam. I heard statistics and was confused. There was no way of knowing what life would be like if I had a child with a disability until I lived with it. And the fault is society – us. People with disabilities are the statistically highest minority group in the US today. Unlike other disabilities, however, autistics still do not receive the same consideration. While people may be listening somewhat to the Downs and other communities, we have a real problem in hearing out those with autism, largely due to ignorance about disability to begin with and then how that has proliferated organizations like Autism Speaks which spread fear and despair about autism, despite what people with autism have to say about their own disability.

The New York Times article on disability today says:

“The public image of people with disabilities has often hinged on the heroic or the tragic. But Mr. Blue [who has CP], 28, represents the broader portrait of disability now infusing television and film. This new, sometimes confrontational stance reflects the higher expectations among many members of the disabled population that they be treated as people who happen to have disability, rather than as people defined by disability.”


At the MIT lecture, a young man said that he could understand what it would be like to lose an arm, be deaf, be blind, but he couldn’t understand what it would be like to be autistic – that he couldn’t wrap his head around it. I think what most of us are lacking, in this autism debate, clearly, is a theory-of-mind. Indeed, it is not the autistic who are “mind-blind,” but rather, the rest of us who are blind to the community, the words, and the real lives of those who tell us everyday, what it is like to be autistic in our society.

Life is not a Preparation

This Tuesday, I'm speaking at MIT. I'm talking about all the fear and fascination we see and hear about autism and what respect means. I'm talking about a fair way of talking about autism. I'm so heartened to hear others who talk the same way. It strikes me that our autistic children are put under unfair and impossible microscopes -- every behaviour scrutinzed, pondered, with therapists often wanting to change it. Is this really fair? Do we put other five year olds who tantrum and are being stubborn, or who do not want to do something under the same microscopes? Have we set the bar a lot higher for children with special needs?

This focus on changing behaviour that isn't harming anyone strikes me as a waste of time when Adam needs to focus on learning and living, but not always preparing for the future. That really does happen naturally. We have decided that it's also important to spend time enjoying life and being together. I think today I'll take him out for lunch, walk the dog, and we'll do what we want -- it's Sunday. I don't book anything on Sundays so we can discover what's out there, discover ourselves, and who knows what else. What we want is some quality in our lives, and we are happier when we don't have to worry every single day of what may be or what may become of Adam. Life is about living. Yes, it's also about working. But we want to live today, not worry about tomorrow. Here's a great post by Aspie Home Education. In order to learn and to discover ourselves, autistic or not, we need some time and space to experience.

Ralph Savarese's Book in Newsweek:

Home Is Where The Heart Is
The Savarese family thought they were autism experts—and then they adopted DJ.


May 4, 2007 - We’re told to pick our battles if we want to make a difference in the world. Activist and writer Ralph James Savarese thought he and his wife, Emily, had done just that. For her it meant working with a Florida center for disabled and autistic children. For him it meant writing and teaching college students about responsibility and social obligation. But in the late '90s they found themselves forgoing these larger causes for the smaller one staring them right in the face: an abused, autistic toddler named DJ. Click here to read more.

Blogging Against Dis-Ablism Day

Today is blogging against dis-ableism day --the purpose of which is “to write about disability and rail against the discrimination that disabled people continue to face.”

Yesterday, Orato Media published "I am the Happy Mother of an Autistic Child." I think that will be my contribution to today's theme. It is about accomodating autism versus remediating it, and understanding the Hue in Hu-Manity.

Speaking of hues, I also want to point you to Elliot, an autistic five-year-old artist who was in the New York Times today (thanks to Kristina of Autism Vox for pointing me in his direction). Elliot's cards are available for sale here.

In the Wolfond household, we are about what can be done as opposed to the cannots. Our lives are about creating the lives we want to live and trying to make it happen no matter what tries to obstruct us.