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Camille Clark, the woman behind the Autism Diva blog, has been harassed by phone and e-mail; it looks like the blog is no longer active but the archives are fascinating.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.  Kathleen and I 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.

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.

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!"

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

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.

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.....

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.

Social Security PASS Program: A pathway to self-employment

How 1 Autistic Young Man Runs a Business is a great article sent to me by reader "K." It describes how Joe Steffy, a young man with autism and Down's syndrome operates his own Kettle Corn business, Poppin' Joes Kettle Corn. This guy is from Kansas and is also nonverbal.

Joe developed his business with the help of his parents, a consultant, and a program that's news to me - the Social Security Administration's Plan to Achieve Self-Support program (PASS). He now has five part-time employees and unmeasurable self-esteem and sense of worth that comes with running your own company.

The PASS program offers resources to enable people with disabilities in the Social Security system to begin work or return to work. A key support in the program is the ability of persons who receive Social Security benefits to set aside money and/or things they own to pay for items or services needed to achieve their specific work goal.

Joe was required to develop a business plan to participate in the PASS program. The webcast on his web site, "Developing a Business Plan for Self Employment" may be useful for families exploring this employment option. The PASS program has other requirements, all outlined in this link.

More information about the program, and other success stories, can be found in this video from the University of Florida Institute for Child Health Policy.

What I don't know is how this program is fairing in light of budget cuts and the economy. It would be a shame to curtail the program, especially since participants who succeed save the government money. For example, Joe no longer receives Social Security disability payments AND he pays state and federal taxes.

If any readers have experience with this program, or know about it's future fate - please share.