At What Point?

Filed Under (Acceptance, Inclusion, Joy, Research) by Estee on 14-11-2010

At what point do we stop participating in research studies? I think about this as I receive another request to do so with Adam. We’ve received many of these notices and requests over the years to participate in one research study or another — none of them very appealing to me.

Adam is eight. He began his life as any other infant and toddler. Then suddenly, at the age of 19 months, before he was two (!), he was diagnosed as autistic. Everything at that point changed in our family life, although Adam had never changed. Our views of him had changed by virtue of a label, a screen through which we now saw him. We spent time in doctor’s offices, with diagnosticians and therapists galore. Life has been nothing but a stream of experts and research trying to figure him out. As his mother, I’ve accompanied Adam on this journey, and even subjected him to this.

Although I’ve always been so inclined, and this is likely a natural progression for me, I feel as if I’m entering a period of trying to look at myself objectively as his parent and how I need to figure myself out. How have I managed, after all, with autism and the many things that life brings? I am becoming far less anxious about what Adam will be when he grows up to trying to figure out what will make us simply content in the day-to-day. The work we need to do should be less about fixing people than on creating an inclusive, welcoming communities.

After all, life is extremely fragile. The odds of being born are slimmer than we imagine. Nature has a way of aborting the “wrong combinations” of genes. Yet, there are so many fragile people who have usurped the odds and reached the point of being born. Who is to say that autism or any other disability in this sense, then, is “wrong?” Perhaps there is no real genetic “order,” and “normal,” is not one complete genetic sentence. It is a new way of looking at disability. It is a new way I can look at Adam who continues to overcome so many odds. Adam is here. He forced his way into the world and he not only survives — he thrives.

Today I can’t stop thinking about Adam’s quality of life, and what that means for him, not me, although the quality of mine seems to improve everytime I look at Adam and enjoy him. He must be taught, he will grow, and he will develop his own need for independence. No matter how severely disabled one is, the will to be so is strong in all of us, even when we need others to assist us in our daily lives. I’m reluctant to be a part of research studies as they are crafted right now — to subject Adam to batteries of tests and “experts,” even if some of these studies may be valuable. I know there are some disorders that may benefit from studies, although my thoughts are still inconclusive on this. Still, I do not want Adam to view his life as if he is living in a sort-of test tube. I do not want to get angry at people who will view, by virtue of their research role, on-looker and so forth, Adam as a subject or a pathology. Hey, he made it after all. He deserves to be here. Researchers should be throwing rose petals at his feet! (Hmmm, that’s an idea. Celebrate life. Novel.)

So I don’t participate. We don’t need false expectations and I don’t need the pain of prejudice, that is, that subtle suggestion that we should be doing something to change Adam and make him better. I am much more interested in, not the genetic code, those “incomplete genetic sentences,” if you will. I’m interested in book of life we are writing — fragmented to full sentences, idiosyncratic spelling, words, noises and all. We are born to give back to the world, to contribute, and to find the beauty in our lives. As I grow a little older, I no longer see the value in competition, in being the best. I see the necessity of working together in creating a more just world.

Protecting Little Joys

Filed Under (Acceptance, Adam, autism, Autism Theories, Joy, Research) by Estee on 04-10-2010

We have to protect our little joys. I was thinking of this as I was putting Adam down to sleep this evening. As usual, we read Dr. Seuss. He eventually yawned and put his head down on his pillow. It sounds “normal,” I know. Around here, hums, noises, hand-flapping, smiles, and some words (difficult to come by) are our normal. Also “normal” is Adam’s soft hair that I can’t help recounting over and over because he presses his head gently into my face before he drifts off to sleep.

Adam has adapted to his new school which will accommodate his special learning needs. Today, he brought home a Recognition Certificate for his accomplishments — on focusing and “completing daily tasks.” I thought it was a wonderful idea to recognize his accomplishments. I loved it also because Adam was full of smiles when he came home from school today. Thankfully, his cheeks are still so round that when he does so they just get fuller like the moon. Time has not taken them from me yet.

As his parent, I have a right to enjoy Adam’s brief childhood. I’ve been in this autism world for six-and-a-half years now with Adam (he is eight) and I’m always breathtakingly amazed with the copious amounts of information about autism, usually presented in dire terms, that infiltrate parents negatively and make them worry. We worry so much that we blog, enter information on Facebook and Twitter about autism endlessly. Okay, let me speak for myself by hiding behind the “we,” won’t you? If we’re not actively doing that, we at least read so much. Worrying about our children, autistic or not, seems to be part of the parenting job. We all want our children to learn. I am not against research or reading the information. Yet I do think it’s okay for parents to take a break from the autism tornados brewing out there.

Autism doesn’t steal our children. Fear and worry steal precious moments with our kids. It steals our happiness with what is. It might be the reason why I find it difficult or frustrating to read some things these days. We still need more “positive autism” out there.

I cannot think of times more special than these: reading to Adam, watching him smile, being witness to every accomplishment (no matter how minor), and simply putting him to bed, to name a few. Thinking of how quickly this will pass — when he will no longer have the famous cherub cheeks and tiny-voiced giggles, well, I want to know that while there was worry constantly spinning around us, and a race to make Adam “better,” that I really did work on being the calm within the storm. I want look back and know that while I served him well to find the best-suited education, I also took the time with him to just be happy.

Has Our Autism Doomsday Arrived?

Filed Under (Activism, Advocacy, autism, Discrimination, Ethics, Research) by Estee on 10-06-2010

We knew there were genetic studies on autism. We knew this was coming. Perhaps a better title for this would be “for every downside, there is an upside.” This is could be very true about the Human Genome Project.

Today Carolyn Abraham reports on the front page of The Globe and Mail the recent publicity surrounding the findings of an international group of scientists trying to uncover the genes that comprise autism. Throughout the article, Ms. Abraham describes autism and it’s “genes” as a hiccup — “genes fouled up by long stretches of missing or duplicated pieces of DNA.”

Doomsday is coming, or it could come. I know that there are parents who dread having a child with any disability. I understand that no two families are alike in the way they approach the subject. Yet there are families who do cope well; those of us who value the children we have and balk at the concept that humanity can be distilled into DNA. Of course, it can in a sense, but the complexities of being human cannot. I could tear this article apart. I am utterly offended by it, if I am to admit my leanings. I cringe at the thought of my son reading that he is a “hiccup” or a series of “fouled up genes.”

Just as important is the idea, the very scary idea I might add, that we can terminate an autistic pregnancy. The study co-author Peter Szatmari admits that the prospect of the commercial test that will prematurely reach the market “makes me nervous. I don’t think we have the science yet to nail it down. This isn’t one gene but a profile of genes, a pattern of susceptibility, not cause.” As reporter Abraham writes, “in the direct market age, the market rarely waits for more research.” In other words, in a world that hardly understands disability, how disabled people live and feel, disabled pride, autistic pride, and rarely hears or listens to the voices of autistic people, parents may rush to pick up a screening test. Without this knowledge, what do you think is going to happen?

Then it occurred to me: Adam’s parents, that’s right — his father and myself and his entire family — would likely have many of those genes — those “fouled up” ones in one way shape or form. Maybe this would mean I would not be here, his dad, his grandparents, his Bubby or his Zaida. “In all,” says the Globe article, “the study spearheaded by post-doctoral fellow Dalila Pinto at Sick Kids, identified more than 100 genes affected in the people with autism, many of them forming a part of a network that governs how brain cells grow and talk to each other.” Perhaps this comprehensive network is part of all of us that make up autism. Autism is an accentuation of our very human traits.

As far as I’m concerned, this is doomsday approaching fast IF the dialogue about how we use science — how we implement knowledge — better be linked with a dialogue about not only what it means to be human, but the very right to be disabled, autistic and yes, what can be wonderful about that in our world that has been taught to fear disability. There is a social aspect here that is running the show and we are a highly biased society against those with neurological differences and further, we write about autism as if it’s the worst thing on the planet.

In our family, and in many others that I know of, it is not. Premature reporting of scientific findings without a balanced argument (or even acknowledgment that there are people who prefer to be autistic) of this kind runs a very high risk.

Another discussion that may help our own:

The article referred to in Nature here.

“People With Autism Ace Intelligence Test”– Globe and Mail

Filed Under (Activism, Adam, Autism and Intelligence, Autism and Learning, Research) by Estee on 17-06-2009

I’m leaving my theme of writing about children for a moment to disseminate today’s article in The Globe and Mail here.

It defintely makes a lot of sense to us as Adam has learned to play piano using visuals and patterns. He just had his first recital last week and beamed with “hey, that applause is for me?” kind-of-pride that just swells and oozes with, well….joy.

Research That Enhances Lives, Not Annihilates Them

Filed Under (Activism, Critical Disability Studies, Research) by Estee on 12-04-2009

I know that as a parent of an autistic child, I want to see much more research on what enhances the lives of autistic individuals, not research that seeks to annihilate autism. I want research that shows how autistic people learn and what they have already contributed to the world in order that an autistic way of doing and thinking is more valued in this society.

I believe with all my heart that there is a place for Adam —  many places among us all where he will contribute greatly. I believe it so much,  I joined the Critical Disability Studies Department at York University; to help make the dialogue as prominent, if not more so, than the research funded for cures. 

I am at a university which not only has such a department that questions all status quo notions about disability, but also talks fundamentally about social justice. It is so ironic because nearby work the to “fight this terrible disease,” and across the way, a behavioural department seeking to modify undesirable autistic behaviour. It’s an interesting mix, this microcosm of the world the UNIVERSE-CITY. (University was never as subdivided as it is today. The focus used to be on studying everything so one had a universal knowledge — sort of like a renaissance-man sort of body of knowledge where one area of study would inform the other. Scholars often note the dumbing-down of a university education with areas of specialty. This is what the Critical Disability Studies Department does not do. It culls from philosophy, history, sociology, law, culture, art and more to study disability).

If you are interested in this kind research (and there are more calls for social research out there everyday), you can start at the Interagency Committee on Disability Research to start. Check out the universities as well. The more we ask, the more we may receive:

 

The ICDR Seeks Your Recommendations on Emerging Disability Research Topics

Web site provides opportunity to vote and prioritize disability issues of greatest concern

This year for the first time, the federally mandated Interagency Committee on Disability Research (ICDR) is utilizing an innovative Web-based approach to collect online disability research comments to assist in developing a federal disability and rehabilitation 2010 research agenda. This technology-driven approach gives the public a three-week time frame from March 27th through April 17th to submit their recommendations.

Additionally, registered participants will be invited to review all comments submitted and vote on their top ten concerns in each topic area during the one-week period from April 22nd through April 29th. Public comments from stakeholders are the focal point of the disability research recommendations in the ICDR Annual Report to the President and Congress.

All disability-related research topics are welcomed, including discussion about concerns important to the veteran and military communities. The ICDR is seeking comments with special emphasis placed in the following areas:

  • Collaboration and coordination among federal agencies;
  • Health information technology and/or electronic health records;
  • Health disparities;
  • Health promotion in the workplace;
  • Employment and health; and
  • Other critical research issues.

Guidelines and Instructions:

  • To submit your comments and vote via the Web site you must create an account.
  • If you have problems submitting comments via the Web site please either:
    • e-mail your comments to ICDRevents@cessi.net,
    • fax them to 703-442-9015, or
    • mail them to: ICDR c/o CESSI, 6858 Old Dominion Drive, Suite 250, McLean, VA 22101.
  • Written comments must be:
    • No longer than 250 words or 1,500 characters
    • Single-spaced using 12-point font in Times New Roman
    • Received or postmarked by April 17, 2009 (3:00 P.M. EDT)
  • Online Public Voting: April 22–29, 2009 (11:59 P.M. EDT)

About the ICDR

The ICDR is authorized by the Rehabilitation Act of 1973 (as amended) to promote overarching coordination and cooperation among federal departments and agencies conducting rehabilitation research programs and activities. Major roles of the ICDR are to identify research duplication and gaps, secure public input and compile data to inform future research, promote communication and coordination, and facilitate interagency collaboration.

The ICDR brings together agency representatives, policy makers, advocates and people with disabilities through a Senior Oversight Committee (SOC) and subcommittees. The SOC is the ICDR administrative body that spearheads interagency collaboration and research coordination. The subcommittees represent specific areas of disability research including education, disability statistics, employment, medical rehabilitation, and technology. The ICDR facilitates the exchange of information on disability and rehabilitation research programs, activities and collaborative projects among ICDR member agencies and federal partners.

For more information about the ICDR, visit the Web site: www.icdr.us.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.