Thursday, June 25, 2009

Autism's False Prophets: A look at the role of bad science and good intentions


Autism's False Prophets: Bad science, risky medicine, and the search for a cure, explores the role of social forces in shaping what we perceive as "science" and "truth." Through great research, author Paul A. Offit debunks the idea that vaccines or mercury cause autism, or that biomedical "alternative" treatments will cure it. He aims to give voice to parents who do NOT buy into this idea, and resent the diversion of research and resources spent to prove or disprove causation and miracle cures rather than interventions and family support.

That would be me. Hear Offit's own words here.

Offit's book features a few parents who have publicized their beliefs, at times at the peril of their own family's safety from zealots. Camille Clark, the woman behind the Autism Diva blog, has been harassed by phone and e-mail; it looks like the blog is no longer active but the archives are fascinating.

Kathleen Seidel is an activist who started neurodiversity.com. She has had her share of vocal detractors as well, many other parents of children with autism. Her web site/blog has a great Health Fraud section. I identify with Kathleen in that we both consider ourselves liberal Democrats, but are on the "wrong"side when it comes to conspiracy theories about "Big Pharma" (the pharmacy industry) being in cahoots with the government to cover-up harm done by vaccines. We're not buying it.

Neither are we buying the promise of alternative "cures." Says Kathleen, in the book, "When I read about a doctor who suggests to a parent that they take out a second mortgage on their house so they can buy a home Hyperbaric Oxygen Therapy Chamber, I want to cry." (230).

I encourage readers to check out these web sites, and read Autism's False Prophets. Have you tried a non-traditional treatment for your child with special needs? What was your experience like? I shared a bit about our family's experience in my post Race for a cure or journey towards acceptance? Please share yours.




Friday, June 12, 2009


Today is graduation day for high school seniors 'round these parts. But for teens or young adults with special needs, it may just be another day, if they are not "walking" with their "typically developing" peers.

How nice, then, to read about a graduation ceremony recently in Oregon for graduates of the Salem-Keizer School District's Community Transition Program. This article describes the impact that graduates have had have on the instructional assistants, bus drivers and specialists who have worked along side of them for so many years. Many of these attend the ceremony as "crucial partners in special education."

Thanks for Mackenzie Ryan for writing this article, for the Statesman Journal for publishing it, and to reader "K" for bringing it to my attention via Facebook.

Friday, May 29, 2009

IEPs According to Dr. Seuss (author unknown)




Dan was sent this poem via Washington Dads, a support group for dads raising children with special needs. It seems appropriate with IEP season upon us.




IEPs According to Dr. Seuss (author unknown)


I do not like these IEPs

I do not like them, Jeeze Louise


We test, we check

We plan, we meet

But nothing ever seems complete.

Would you, could you

Like the form?


I do not like the form I see

Not page 1, not 2, not 3

Another change

A brand new box

I think we all

Have lost our rocks.


Could you all meet here or there?

We could not all meet here or there.

We cannot all fit anywhere.

Not in a room

Not in the hall

There seems to be no space at all.


Would you, could you meet again?

I cannot meet again next week

No lunch no prep

Please hear me speak.

No, not at dusk. No, not at dawn

At 4 pm I should be gone.


Could you hear while all speak out?

Would you write the words they spout?

I could not hear, I would not write

This does not need to be a fight.

Sign here, date there,

Mark this, check that

Beware the student's ad-vo-cat(e).


You do not like them

So you say

Try again! Try again!

And you may.


If you will let me be,

I will try again

You will see.


Say!

I almost like these IEPs

I think I'll write 6,003.

And I will practice day and night

Until they say

"You got it right!"






Sunday, May 17, 2009

The Perils of City Driving: Have the streets shrunk or has my van grown?

Wow - where did last week go? My Different Nest has been a Neglected Nest of late, but here is a story about driving in "the City" that I posted recently in the 50-something Moms Blog:

City Driving: Not so fun anymore

Portland Today I drove into downtown Portland (OR) from Camas, WA, the "suburban utopia" I call home for a mid-day appointment. I often go visit the Portland neighborhoods but it has been a while since I've been to downtown, let alone driven in on a week-day.

Either my mini-van has gotten bigger or the streets have gotten narrower, but this trip was a bit harrowing. The simple, and embarrassing, truth is that I'm not used to sharing the road with so many pedestrians and cars. The streets in the suburbs are so, well, wide. The stop lights are fewer, and further in between. And the rush hour traffic home. Oy, I could never deal with it every day.

While I was driving downtown, destination: Smart Park garage, Goal: Don't hit any one, I remembered how I used to drive over to to the East Village from Long Island in my parent's car. At night. At age 17. And it didn't faze me.

As I was driving home, I recalled how I learned to drive on the Long Island Expressway. Yes, our high school driving instructor used tough love to teach us how to merge. In retrospect,he deserved a medal for bravery. But, this afternoon there I was on the freeway, shoulders scrunched up to my ears and hands rigidly set at 10:00 and 2:00 o'clock battling "traffic" that DC Beltway drivers wouldn't bat an eye at.

Now I'm home safe and sound, wondering if it's middle age, suburbia, driving a Dodge Caravan instead of a Dodge Dart - or a combination of all of the above. All I know is that when I retire I want to live IN a city, so I can walk or ride on over to the Early Bird Special.

This is an original 50 Something Moms post. When Carol is not driving her minivan with the largish carbon foot print she writes in her blog A Different Nest.

Thursday, May 7, 2009

On explaining autism to a "neurotypical" 1st grader






A few days ago, our 1st grade neighbor boy, "B", went with Sayer and I on a walk around the neighborhood. Rather, I walked, Sayer rode his scooter and "B" was on his bike but mostly walked along side me, chatting. As we cruised by the elementary school one block from our house, that "B" attends, and he asked me, as he has in the past, why Sayer does not go to his school - aka our "home school."

I explained that Sayer has autism and that he is in a special program at another elementary school (which, mind you, is a only a mile or so away). I asked him if he knew what autism was, and he said he had heard of it.

I gave him the Readers Digest version, saying Sayer learns differently and has some problems talking, and with being a good friend, and can get overwhelmed when a lot is going on. Also, sometimes it makes his behavior not so great. And "B" replied, "Oh, yeah, like when Sayer doesn't always answer me when I ask him questions." Yes, like that, I said.

By then, we were back at our house, and "B" seemed satisfied with my explanation. Sayer, naturally, ran right into the house without saying good-bye to "B", giving me another example to describe to him how kids with autism have limited social skills. With that, "B" was on his way, quite nonchalant.

Has anyone had a similar experience? It's hard to know what is too little and what is too much information to share. Sort of like the birds and the bees.....

Thursday, April 30, 2009

Pondering the Neurodiversity Movement


"I am not a puzzle, I am a person" is a salon article by Elizabeth Svoboda with this preface: People with autism don't need to be "cured," argues the burgeoning "autism culture" movement. Not all parents or medical experts agree.

This fascinating article was forwarded to me by my friend and personal autism-issue clipping service (Thanks, Mr. D!). It's about the "neurodiversity" movement - and I'm not sure what my opinion is on the idea that society needs to learn to adapt to people on the autism spectrum, not the other way around.

I am quite concerned about the "ABA-bashing" aspect of this movement. Individual ABA therapy, a type of behavior therapy commonly used for people with autism, jump started Sayer's ability to talk, and instilled in him vital self-sufficiency skills. Both his language and self-help abilities are essential to who he is today - although he STILL would have you believe he needs help putting on his socks. And I think that the "aversive" techniques originally used in this therapy, decades ago, are rare today.

On the other hand, any movement that disparages Jenny McCarthy has some merit, in my book. From the article:

Jenny McCarthy can go jump off a cliff. While the Hollywood comedian's claims that childhood shots cause autism may be well-intentioned, Ne'eman says, her message has a pernicious and probably untrue implication: If we stopped giving kids "toxic" vaccines, autism wouldn't exist. Not only does this message distract from pragmatic efforts to get autistic kids the social support they need, it implies that autistic children are inherently less valuable than their normal counterparts. "The cure paradigm sends a message that there is somehow a normal person under the autistic person, and that's a significant denial of who we are.

But yet - people like Sayer do need to fit into the world as it is and not endanger themselves or others. And to disparage therapies is like throwing the baby out with the bathwater. Please share your views on the idea of neurodiversity, and this article.

Tuesday, April 21, 2009

Finding Feingold


Our family has decided to try the Feingold Program/Diet for Sayer. Here's a quick definition from their web site:

Numerous studies show that certain synthetic food additives can have serious learning, behavior, and/or health effects for sensitive people.

The Feingold Program (also known as the Feingold Diet) is a test to determine if certain foods or food additives are triggering particular symptoms. It is basically the way people used to eat before "hyperactivity" and "ADHD" became household words, and before asthma and chronic ear infections became so very common.

We have noticed anecdotally that his negative behavior patterns are linked to Sayer eating food with artificial colorings, dyes, etc. We aren't expecting a miracle cure, yet the diet seems to "make sense" to me in the way that the Gluten Free/Casein Free diet does not, at least for our kid.

This week is what I call a "soft launch" of the diet in our home. We have received all the materials on what ingredients to avoid and what specific foods are acceptable. We are trying to give him foods that meet the first stage of the diet, but are waiting until next week to be true zealots.

Fortunately, there are still a lot of foods Sayer can eat that he enjoys. We're mixing it up so he can enjoy new things, like Fritos and even an approved brand of sliced salami (who knew?). It's just somewhat of a hunting expedition to find them. I went to the super discount supermarket, Winco, yesterday and finding acceptable luncheon meats and cheese was a bit like hunting for lady bugs in a tar pit. But,I survived to tell the tale.

Maybe it is because of the food changes or maybe it is because Dan and I feel calmer because we are doing SOMETHING to counteract Sayer's perseverative behavior besides extolling him to stop, but our lil' boy does seem calmer this week than he has in a while. If it's the placebo effect, I can live with that = bring it on! But, I hope that it does have something to do with food and chemicals in non-food items like shampoo and toothpaste, because that is something we can control.

Wish us luck!