29 April 2005

Oxidation and autism

From - Forbes.com:

'Oxidation is basically burning,' McGinnis said. 'Chemically, it involves the loss of electrons. A burning match is a clear case of oxidation.' Other examples include an apple slice turning brown or vegetable oils that go rancid, he said.

McGinnis' studies have found that autistic children exhibit high levels of cellular oxidation, which exacerbates the disorder's symptoms. To treat this, McGinnis is exploring the intravenous use of important antioxidants such as zinc, magnesium and various vitamins. He said his research has shown some success. 'Some of these kids talk only on the days they get these IV treatments,' McGinnis said.
Just as autism is a spectrum, so are the apparent causes....

28 April 2005

The language of "us" and "they"

We first came across this poem by Mayer Shevin many years ago when we were first coping with a diagnosis of autism, and found copies of it recently when were doing some spring cleaning. You can find more about it at the links above, but I've included it below:

We like things.
They fixate on Objects.

We try to make friends.
They display attentions seeking behavior.

We take a break.
They display off-task behaviors.

We stand up for ourselves.
They are non-compliant.

We have hobbies.
They self-stim.

We choose our friends wisely.
They display poor socialization.

We persevere.
They perseverate.

We love people.
They have dependencies on people.

We go for a walk.
They run away.

We insist.
They tantrum.

We change our minds.
They are disoriented and have short attention span.

We have talents.

We are human.
They are ?????????????????
Kind of takes me back to Luke's question, "When is an obsession not an obsession."

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Autism Information from CDC

A resource I just learned about is the CDC - Autism page. Has the basic info about Autism spectrum disorders (ASD) and links to more detailed info the CDC has compiled.

Thoughts on curing autism

Research into autism's causes and a cure are very important, and I hope for success sooner rather than later. There is a lot of work going on towards finding a cure for autism. The most obvious example comes from the appropriately named organization Cure Autism Now, (or CAN, for short).

But what would happen if, all of sudden, they did find a cure?

"We can give your child a shot now, and when he wakes up tomorrow he will no longer be autistic. Would you like us to give him the shot?"
Pose this question to a group of parents of children just diagnosed with autism, and chances are you would get a very quick, passionate, and unanimous response of YES!!! Ask this question to those partents of older children, though, and the responses would likely be more hesitant, not quite as passionate, and definitely not unanimous. Ask this question of autistic adults, and you may be surprised at the answer you get.

In the forward to her book Thinking in Pictures, Temple Grandin is quoted as saying the following on the subject:
If I could snap my fingers and be nonautistic, I would not - because then I wouldn't be me. Autism is part of who I am.
Unlike a cure for a physical ailment, which fixes the body so it works properly, a cure for a neurological disorder such as autism fundamentally changes the nature, the personality, of the person suffering the disorder. As autistic children get older, their personality becomes more and more not just a product of their disorder, but inseparable from it. If you take away the autism, what else do you take away?

14 April 2005

Your Life's Work

In the soon to be released What is Your Life's Work? : Answer the BIG Question About What Really Matters...and Reawaken the Passion for What You Do, author Bill Jensen recounts a defining moment in his life, when he :

Over ten years ago, a wake-up call completely changed my life’s work, and pulled me into this project. In July 1994, I came home one night just as the phone was ringing. It was my sister. Mom just had a massive stroke. We’d better get to the hospital — fast.

We got there just in time for the emergency room doctor to inform us that Mom wasn’t expected to make it through the night. None of us was prepared for this shock. Mom was the cornerstone of our family. Suddenly, we had to say goodbye....

For months, I scribbled down what I was going through and thinking about. Eventually, a new kind of clarity emerged for me. I found a new calling — what really mattered in my own work became crystal clear....

I can draw a direct line between what happened in the hospital that night, my diary about the experience, and how that changed what really mattered for me.
Parents and family members of autistic children can identify all too well with this. We all have that moment first of, "What?". Then, "How? Why?" Then ultimately, "What can I do about it?" Which sometimes (usually) results in a re-thinking of their life's work.

There are many examples of organizations and efforts started up by parents and other family members of autistic children as they embark on this new work. The first I recall using was the American Hyperlexia Association, started up and maintained (until very recently) by Ted and Julie Whaley. It was an invaluable resource as we tried to figure out what was going on and where things would lead. Thanks Ted and Julie.

11 April 2005

Adventures in Autism: A Case for Mainstreaming

As our autistic children grow up, one of the key questions that we face is where they will go to school. To mainstream, or not? From Chandler's Mommy is this Case for Mainstreaming:

In 1998 Yad Hamoreh became the first conventional educational facility in the world to open its doors to severely disabled autistic children and to integrate them into day-long studies and activities with mainstream pupils.

While the first years were chaotic, today the school stands as the world's pioneer in the field of school integration with low-level autistic pupils. The endeavor was initially an unmitigated disaster. In class, where they had been placed with healthy pupils, autistic youngsters would rock back and forth, beat their heads against the walls, pull their classmates' hair, scream, and savagely bite both themselves and others.
As the quote above states, the article addresses mainstreaming of low-level autistic children, but is worthwhile for the parents of any kids on the autistic spectrum. Unfortunately, the process this school adopted, and the participation of the "typical" students and their parents, is not going to be the norm at most schools. Neither will most schools be willing to accept the hard times early on.

Still, it gives you hope.

04 April 2005

Evidence of Harm - thimerosal and vaccines

On today's Leonard Lopate Show on WYNC, Leonard spoke with David Kirby, author of Evidence of Harm:

Bad Medicine?

David Kirby investigates the side effects of thimerosal--a preservative used in vaccines that contains mercury. Noting that the use of this preservative coincided with an upsurge of reported cases of autism amongst American children in the 1990s, he looks into whether these vaccines directly hurt children, and who should be held accountable if they did, in Evidence of Harm.
You can listen to the discussion in Real Audio format or get it (and other things from WNYC) via podcast.

If you are in the NYC area, you can see David Kirby speak at the 92d Street Y, Makor Steinhart Center Division on Wednesday at noon.

01 April 2005

April is Autism Awareness Month

In support of local efforts here in New Jersey, I've signed up as an "Autism Awareness Ambassador" for the NJ Center for Outreach & Services for Autism Community, or more simply COSAC. Their mission statement (quoted from their website):

COSAC is a non-profit agency providing information and advocacy, services, family and professional education and consultation. COSAC encourages responsible basic and applied research that would lead to a lessening of the effects and potential prevention of autism. COSAC is dedicated to ensuring that all people with autism receive appropriate, effective services to maximize their growth potential and to enhancing the overall awareness of autism in the general public.
As part of my ambassador duties, I've also set up a page as part of COSAC's online fundraising campaign for Autism Awareness month. I've set a modest goal of US$500 and am posting this notice here (and here) as well as sending out some e-mails to friends and family. While COSAC is primarily an NJ organization, the work they do ultimately benefits us all.