Hey Baby, What's Your DNA?

If you've been wondering why I haven't written or responded to comments, we are on vacation. I have not had frequent access to a computer. It is wonderful to step back sometimes and just watch Adam and enjoy him. We play in the sand, we do our thing, regardless of the relentless ramblings of a media that won't let us forget that there is something nearly surreptitious going on without our realizing it, like an unrelenting wave that, when it recedes, it only undulates back again.

Latimer, Judge Rotenberg Center (the article in the New York Times that seems to justify, again, it's existence because kids are "too tough" to handle), and today's rather interesting but also perturbing article in the NYT (sorry, I can't link to articles on this computer so search for December 28th's paper), on variations of DNA. All of it would make you think there there are serious epidemics going on rather than science beginning to find the distinctions between us. Will it really help us to assist our children? Will the barrage of labels really serve to understand various individuals with disabilities?

I haven't uttered "autism" once here, because it won't make any difference. Adam plays, he swims, he tried to kiss his first girl (other than his mother and grandmothers), and more. No one is passing judgement on him here, even if he can't speak that much (or is afraid to because he may also be so aware that it is more difficult for him). I don't feel the need to justify him or his way of moving and being in the world. As my mother-in-law can attest, he is "magnificent."

My friend with two disabled children is here too. She said to me last night, "it makes me so sad to think that there won't be any more people with Down Syndrome in twenty years." I think she has summed it up for many of us parents with genetically different kids. We don't see the problem, here. (Well, I can think of a couple of bloggers who think there are major problems, and as they are parents themselves, I cannot relate to them whatsoever). It is only the medical profession and the media which profits from such a gaze -- the medical gaze, if you will.

If you decide to read today's article in the New York Times, you might be thinking something like me: I can imagine a day when our kids are sitting in a bar, having grown up in a generation of label fanatics, thinking of themselves as quirky, maybe even deficient and living to tell about it. Hopefully they will have rationalized it and come to define themselves on their own -- without their labels. Adam may ask to buy a girl a drink and say, "Hey baby, what's your DNA."

But with the undulating wave of gloom that persists -- be it the Planet in Peril, the wave of health epidemics for which we must DO something, I can only hope for such wonderful sarcasm and such a strong sense of self.

Ransom Notes Campaign is over (but negative media and representations are relentless as I accidentally catch Dr. Phil)

Our petition worked. Thanks to everyone who came aboard to sign the petition against this campaign. The Ransom Notes Campaign is over. Here is their public statement.

However, as I write this, I am watching another "horror" show about autism on Dr. Phil, which demonizes an autistic boy. One mom talks about how the "divorce rate is so high" with autistic children (which is unproven), and how she wishes her child would die before her so that she wouldn't have to worry about what might happen to him when he dies. Sounds eerily familiar to Allison Tepper Singer's wish to drive over the George Washington Bridge with her autistic child, and which she said with her autistic child in the room.

Dr. Sears is on talking about recovery. The video of the autistic kid who has "fully recovered" scoring the touchdown is on. That mum is proud. Again, best if your kid can be a champ, as Dr. Phil insinuates -- better if all autistic kids can become normal. I'm giving you a play-by-play here. Now parents talking about how autistic kids can be abused by teachers -- yes that unfortunately can happen by people who think autism is just a set of behaviours or who are impatient. I wish we could focus on understanding autism in a show, rather than the horror. Where are the autistic adults?? Why weren't they interviewed on Dr. Phil??

I just want to remind people how the Autism Speaks video said many of these things -- the divorce rate stuff, the murder, how hard it is. I want to repeat how when one thing is said, it is repeated in the media (especially by sensationalists like Dr. Phil). It gets repeated by parents. It gets obsessed about. People believe that autism is just a nightmare. It gets repeated so much that people cannot fathom not believing it. So, it must be true.

So much so, need we remind you of the abuses and copycat murders that transpired after Autism Everyday was aired. As a friend mentioned recently, we never hear about Katie McCaron through Autism Speaks. They just don't acknowledge her.

I propose that we all send a letter, once again to Dr. Phil, to thank him for "trying to help," but to at least provide a more balanced view of autism and help us also celebrate the achievements and lives of autistic people, while we also address our challenges. Next time he does a show, it should be full of autistic adults and those of us who are also happy, and coping, with our autistic children.

Autism isn't holding us for ransom here

Thanks, Dinah Murray, for illustrating the hideous marketing from NYU Child Study Center in the video below.

Thank goodness I've got my son, and not them and not whatever they claim to have "kidnapped" him, cause it sure doesn't look like the Autism we know. You see, autism around here looks normal to us. It looks friendly, it still learns and grows, and it makes our family happy when it smiles. It's learning to type, it's learning to swim, it goes to school with other children and it seems quite happy there. It likes to travel and tends to speak more when relaxed and seeing new things. It likes to jump and likes to run and is just learning to ride a two-wheel bike. It likes to play musical instruments and likes to coordinate its beat with its music teacher. It reads signs well and is learning about dangerous things. It sure doesn't look like it's holding anyone for ransom here. Our son knows he's different, even if he doesn't know who your Autism is, and it's only what you make of it that he will be fully aware of. You can choose. You can tell my son that Autism is holding him for ransom or you can tell him that he's free to choose what he wants and he's alive, and beautiful and we are all here to help him succeed.




Please sign the petition Dinah makes reference to here.

Please read yesterday's post Pity: It's 100% Curable just previous to this post to contrast videos and campaigns.

Pity -- It's 100% Curable

Talking about fear-marketing at various conferences throughout 2007 and it seems that the work is never over (I will be speaking at the University of San Diego in January for those who wish to attend). As the year closes, I'd like to focus in 2008 on not just what is so destructive for individuals by marketing fear and how that leads to MORE stigma, but to focus on what disabled people do so well and what they DO contribute to society.

This will be my 2008 theme -- making such comparisons and critical investigations. My current studies and papers include a look into disabled art and performance and how it has criticized the "normalized gaze," and our popular notions of cure. I will also continue to look at how organizations "market" autism and disability -- be it overly positive as to glaze over the issues disabled people face and so make the so-called "typical" society feel better, to "acceptance" campaigns that don't really accept, to campaigns and films like Ransom Notes or Autism Speaks' Autism Everyday Film and the overly negative and generalized media attention it derives. I hope that all of us can look to ourselves, how we grew up, and challenge our conceptions of disability and "normalcy." I like to use myself as an example -- a neurotypical girl who grew up with virtually no disabled people around me; who ignored the mentally challenged boy from down the street as a child because of peer pressure (and fear); I consider myself an example of how to challenge and hold oneself up to criticism everyday FOR THE SAKE OF MY SON, and others like him. I credit Adam for at least starting my journey in changing my world view.

Thanks to a couple of friends of mine who pointed me to the Gillette Hospital Foundation's Cure Pity Campaign. Here is what the copy says on their website:

Most of our patients have medical conditions for which there are no cures.

But through breakthrough surgeries and innovative medical treatments and therapies, we are able to help them overcome some of the barriers they face so they can lead more normal, joy-filled lives.

That’s what we’re trying to communicate with this campaign. That Gillette does provide a cure for one of the most insidious human conditions of all—pity.

We ask you to look beyond the disabilities and see the spirit, resiliency, and determination these children embody.

In these videos, you will see children of various disabilities who are showing us what they can do. No hype, no fear...only what is possible. In the wake of the Ransom Notes Campaign and Autism Speaks' relentless fear-marketing, there are a few of us who would like to suggest that every time you see some fear tactic, that you make a donation to the Cure Pity Campaign of The Canadian Down Syndrome Society of Canada -- the latter which has major bill boards up here in Toronto that say "Celebrate Being." Self-reflection is really important. Listening to communities who are effected by such negative campaigning is even more so and our Canadian organizations can no longer act as if the voice and concerns do not exist and are not valid. With one in seven Canadians recently reported with having some kind of disability, such campaigning may effect most of us in our lifetimes. It may effect our ability to be treated fairly and with respect. It may effect someone's view of us, as they may ignore us altogether BECAUSE we are viewed as incompetent as a result of disability.

Take a look at this story from the UK Telegraph:

Myles Fitzpatrick, a 10-year-old autistic boy who saved his mother's life after she suffered a near-fatal asthma attack, was among those honoured at the star-studded service in Westminster Abbey, London.

Sarah and Gordon Brown with the 10 winners of the Woman’s Own Children of Courage award, and Steven Tomlinson [third from right]

Despite severe autism, which means he is unable to carry out even simple instructions, Myles dialed 999 and directed paramedics to his home after finding his mother fighting for breath.


As a good friend said, fear is good when you want to make people STOP something, like drunk driving. Fear immobilizes. Hope mobilizes. If you feel hopeless from all this negative campaigning, go to these sites and keep perpetuating LIFE and something tangible for our children's future. Send a strong message.

Thank you Ari Ne'eman

Thank you Ari of The Autistic Self Advocacy Network (ASAN) and others who supported the petition drafted by his organization. Ari's work to demand the withdrawl of the New York Child Study Center's Ransom Notes Campaign has been run in the New York Times, The Wall Street Journal's Health Blog, and the New York Daily News.

I once again call upon you out there to sign this petition. This campaign is not okay. It does not consult the very people it claims to "help," and it continues to perpetuate the fear and stigma it so claims to want to stop.

Is ANY publicity "good" publicity?

I am sorry I haven't been around to write about the the New York Child Study Center "Ransom Notes" Campaign until today. Here is some more reference to it. The Autism Acceptance Project has signed in support against this campaign with The Autistic Self Advocacy Network . The Gimp Parade , Not Dead Yet, Whose Planet Is It Anyway, Susan Senator, Autism Vox, Alex Bain, and others have written on this and I urge you to read, if you have not already, or click on Autism Hub to read more from other excellent bloggers.

I was even more stunned when one of our friends, upon stating her disappointment over the campaign received this letter from its board of directors:

Dean Robert Grossman, Michael Recanati, and Ira Statfeld forwarded your email to me, and I am responding on their behalf.

The NYU Child Study Center's "Ransom Notes" public service campaign is designed as a provocative wake up to create awareness and spark dialogue about childhood psychiatric disorders, one of America's last remaining silent public health epidemics. Twelve million American children and adolescents face daily battles with psychiatric disorders. Untreated, these children are at risk for academic failure, school dropout, substance abuse, suicide, unemployment, and imprisonment. Children who do receive appropriate treatment, however, can learn to function and thrive.

"Ransom Notes" may be shocking to some, but so are the statistics: suicide is the third leading cause of death among young people ages 15 to 24, and serious emotional problems affect one out of 10 young people, most of whom do not get help. The strong response to this campaign is evidence that our approach is working. We acknowledge the challenges faced by individuals with these disorders and their families. We hope to both generate a national dialogue that will end the stigma surrounding childhood psychiatric disorders and advance the science, giving children the help they need and deserve. We want this campaign to be a wake up call. Please join the dialogue.


Harold S. Koplewicz, M.D.
Director, NYU Child Study Center;
Arnold and Debbie Simon Professor and Chair,
Department of Child and Adolescent Psychiatry;
Sr. Vice President and Vice Dean for External Affairs,

As the ASAN letter says,

While the “Ransom Notes” campaign was no doubt a well-intentioned effort to increase awareness and thus support for the disabilities it describes, the means through which it attempts this have the opposite effect. When a child with ADHD is described as “a detriment to himself and those around him,” it hurts the efforts of individuals, parents and families to ensure inclusion and equal access throughout society for people with disabilities. When individuals with diagnoses of autism and Asperger’s Syndrome are told that their capacities for social interaction and independent living are completely destroyed, it hurts their efforts for respect, inclusion, and necessary supports by spreading misleading and inaccurate information about these neurologies. While it is true that there are many difficulties associated with the disabilities you describe, individuals with those diagnostic categories do succeed – not necessarily by becoming indistinguishable from their non-disabled peers – but by finding ways to maximize their unique abilities and potential on their own terms.
and

Individuals with disabilities are not replacements for normal children that are stolen away by the disability in question. They are whole people, deserving of the same rights, respect, and dignity afforded their peers. Too often, the idea that children with disabilities are less than human lies at the heart of horrific crimes committed against them.

I urge everyone to sign the petition against this very dangerous campaign. Not all publicity is good publicity. All we have to remember are the recent mall, church and university shootings to know that. I also think that most of us agree when the rampage of negative campaigning does not reduce stigma -- it only increases ignorance and fear.

YOU CAN ALSO COMMENT HERE AT TODAY'S NYT ARTICLE

Happy Holidays from our Board

Let me introduce to you The Autism Acceptance Project's Board of Directors: Bottom Row from left to right is,

Andrew Brown, Ellen Yack, our new President of the Board in centre, Michael Moon (who was recently featured in The Ottawa Citizen which got cut-off in this online version), my son and honourary board member, Adam Wolfond, Mira Davis-Kelly (part-time assistant and designer of our online newsletter), and myself, Estee Klar-Wolfond.

Top row from left to right is,

Brian Henson, Martine Stonehouse, Jamie Gold (active advisor), Mark Persaud and David Hill.

We look forward to continuing to lecture at schools and universities in our community and abroad, to conducting support groups, and educating governments with regard to the various needs of autistic individuals and to enhance understanding. We also look forward to further developing a very active membership of autistic Canadians at this governance level.

The Board of Directors wishes everyone a peaceful holiday season.

Live Strong

I was just in NYC this past weekend for the Michael J. Fox's Foundation Gala. Henry insisted I get this photo with Lance Armstrong. So, in keeping with the "Live Strong" theme, I'm going to express it in the name of autism.

Also, I didn't have a chance to post Roger Collier's article from the Ottawa Citizen until today -- Autism Reconsidered. I also post it here within this theme.

I really like the article, compared to how other journalists have mostly written about autism to-date, almost always over-simplifying a very complex matter. Most of all, I like the ambition and intention of non-autistic people who strive to understand the views of disabled and autistic individuals.

When I say in the article that Adam "regressed" because of the ABA that was conducted early in hour home before he was two, he did. He has progressed without the use of it, exclusively. What I mean is, the "breaking some tasks into small parts" bit of teaching is something we do often here in our home. Yet with many instructors, ABA or otherwise, he lost some of the skills that he came to acquire on his own. He learned mostly with play therapy, music, exposure to new things, videos, computers and more. I found many therapists did not understand his learning style. I found that they tried to squeeze him into a box in which he did not fit, and those who used the method, or who had low expectations, made him anxious. I found that some therapists did not respect our family values (one told me that nursing Adam still at two was wrong).

Often when you hire someone to assist you or members of your family, they see their role as having to fix things. I wonder how much of this is an encumbrance on them as clinicians? I also wonder how much of this expectation from families shape a clinicians approach to autism? I will admit, there were a few who came into our home -- at the time of our early expectations of eradicating autism -- who said that we had to "accept" Adam and "enjoy" him. In those days when the fight seemed the more honorable route, I got angry with people who didn't want to battle his autism with me because it felt like giving up. At the same time, people who say "accept" should not beleaguer us with their low expectations. Here's one more definition of acceptance: it means that Adam is just as entitled as anyone else -- no less valuable and no less human.

What if we didn't construct a system for autistics that focuses just on fixing them or extinguishing autism? What if we focussed on their innate ability to learn? The wholeness of the child (for lack of a better word but I use it since our kids are conversely often referred to as broken). I want parents, like me, to have choices. We don't want to be fixed. We want to learn, grow, live and be included. Acceptance has propelled us forward and Adam is included in a "regular" school, with an aide. Acceptance has not forced us into isolation.

We did not pull Adam out of all therapy, so if you hear from others that I advocate "doing nothing" for autistic individuals, they are misconstruing the message. In Adam's case, we had to modify the approach to his therapy, and those modifications are always occurring as he changes and grows. I am all for one-to-one assistance. Also, those who want to claim that I am against ABA are mis-characterizing me and the role of The Autism Acceptance Project. There are many people who traverse this path and who love their kids, and I know many families who have little else to acquire here in Canada, so they are working with their teams in the best way they can. Yet, I haven't met one fully satisfied parent. The real fact is, in Ontario, there is little choice in what families can acquire in the name of support, and the overriding view of autism is that it's a horrible thing, which of course, I don't believe. I believe that view is extremely damaging to our children. I know there are challenges - some of which are rooted in perception, others which are real, perhaps exacerbated by lack of understanding and support.

If ABA (which ABA instructors are beginning to say in their classrooms does not work for all autistic people, and who are already expanding their methods outside of the ABA box), works for a family then they should get that assistance (and perhaps the ABA community might feel some solace in knowing that their child's right to assistance need not depend on devastation rhetoric). I am ready to acknowledge that ABA has evolved and it is not pure ABA anymore anyway. What needs changing is an evolution of our understanding of autism from autistic people as well as research that helps us learn the best way to assist autistic people -- from family attitudes to medical approaches to educational methods. We may also need to accept that our community will be diverse within itself. As in the deaf community, there will be branches of belief systems and some of these viewpoints will be influenced by whether or not parents share the disability, or at least share in a sensitivity to "difference."

Back to services, if I need an AAC device and training for my son, then I should be able to get that for Adam without having to travel to the U.S. to find that expertise. If I want my son to be included in the school system, and I want to hire an aide who will assure his safety and learning, then schools should accept that as much as a seeing-eye dog should be accepted. If we are all committed to finding the best ways of assisting our children as well as the adults living autistically, then it can be positive. What I fear is a kind of re-institutionized-like policy for autistic people -- that all autistic kids must be surveilled and go to segregated schools. If the program of surveillance is to simply re-assess a child's need (a child diagnosed early may have been misdiagnosed), and the methods are more expansive -- from play, music therapies and more options suitable for the specific child -- then I'm in support. For Adam's sake, I want to work with others if they are willing to work with us in order that we keep moving forward and say a farewell to days past. We cannot do this, however, without autistic people helping us through the process, or at the exclusion of them. And no movement should feel threatened by including autistic people. If a method is good and really strives to understand autism, it will not wither with the inclusion of autistic people who can communicate.

The truth is, the reality in our home is different than in someone else's. While one parent may wish to wave the magic wand of never having brought a child with autism in the world, there are others, like us, who sigh and wonder what we would have never learned or gained if Adam were different than he currently is. Do I want to take away some of these struggles? Absolutely. But it is very fine line we tread in not only preserving his self-esteem, but in recognizing that his challenges may be the very things that enable his gifts and may have formed much of his unique personality.

What is a mis-characterization of TAAProject's advocacy is a view that there is only one way to do things. We we wish to transmit the message that the huge GAP is society's understanding and attention to the way disabled and autistic people feel about themselves. We need to listen to the the kinds of assistance that they feel was helpful to them as children in order that we may learn (as well as what they need as adults), and we need to listen to how they want to be treated by others in society. We are still stuck in a recent mind-set of institutionalization of cognitively and physically disabled individuals, and in the wake of a disabled civil rights movement (started in the 1960's) we have irreconcilable images and views of disability. This is what we are seeking to change.

If we have different views about curing autism, then that is current truth. That truth may be in part because of our recent history -- discordant with our view of the disabled-person-as-child, with the presumption that they have no means to self-advocate. There is risk to shifting perception and expectations, and to allowing our children to make mistakes, or even letting them move and exist in the world atypically. As parents, we may have to let go a bit and let our children take some of those risks.

We have decided to live our life fully and to be proud of who we are. I do not lessen my expectations of Adam, although clearly see that his path to success may meander. I still expect him to attend university. I expect anxiety, sadness and joys. I do not expect life to be easy, but I do not lessen my expectations that he, like my other step-children currently studying law, could one day be a lawyer for disabled people. A mom can dream inasmuch a disabled person can dream of freedom, for those of us who persevere may make dreams a reality. If you are naive, you position, quite incorrectly, the "Joy of Autism" blog and person behind it, as ignoring all the obstacles that exist. Instead, we live in spite of society's view of us as Tragedy. [capital intended]

This is why the Klar-Wolfond family merges with other autistic people who feel that living "the dream" also comes from a compromise by society -- accept us and let us roam and be included without so much fuss, without grim faces, without so many serious questions, without so many barriers -- many of which are perceptual which lead to passivity, or the belief that it's "too hard" or "too expensive." When we have to keep perky and bright for the sake of another's grim face upon our arrival, that is a stigma we face everyday that is exhausting to us. Wouldn't it be nice if we could walk into a new room that smiled at us? Adam is a bright and beautiful little boy. He does not deserve to be peered at for the sake of it. He deserves to be celebrated -- so says his mother.

While there are devastating moments in everyone's life, being autistic does not need to be characterized as a devastating condition. At the same time, it is okay to speak about devastating moments. Yet, we need to qualify them. What is a tragedy is characterizing an entire life within a thirty-second frame, sound-bite or headline for the sake of fear-marketing. That ignores nearly forty years of lobbying by disabled people that sought the benefits our children have today, as well as the expectation I have now that my son has a right to be a contributing member of society. There was a day when a parent couldn't even have that expectation.

I decided to put Adam's picture in the paper because we are not ashamed of who he is. We are so utterly proud of him. His picture smiling at you says, he and all autistic people DESERVE BETTER -- they deserve to be in our communities, to be included in our schools, and to receive the basic accommodations to enable that to happen.

WE DO NOT NEED PITY. WE NEED UNDERSTANDING. WE ARE HERE AND WE LIVE STRONG.