Friday, April 10, 2009

What is autism? Well, it ain't this.

While waiting for the ignominy that we call "mammogram" yesterday, I picked up one of the free mags in the waiting room. It's name is Austin Woman Magazine. Being a woman and in Austin, I felt I must be a member of its target audience. After paging through about 50 ads for plastic surgery and anti-aging treatments, I figured that my age and gender were its target audience, but that I myself was not.

Then, I came across this story, entitled "What is Autism?" I quote here for your delectation the lede:

"What is autism? Autism is a complex medical illness that affects a person's behavior as well as many of the body's systems, most notably the neurological, gastrointestinal and the immune systems. Children with autism have impaired ability to detoxify themselves. When exposed to environmental chemicals, instead of the body getting rid of them through its natural defenses, the substances build up and cause massive disruption of the metabolism and bodily functions. Children with autism often have seizures, copious foul diarrhea and are prone to recurrent infections because of their impaired ability to detoxify."

Oh. My. God. Let's overlook the crappy prose, the lack of parallelism, the AP style. No. Don't look at that. Look at that description of autism. For God's sake. What? WTF? Impaired ability to detoxify? Can I see the damned peer-reviewed, unretracted citations on that one? Environmental chemicals? What other kinds of chemicals are there? Non-environmental? Heavenly? Other-worldly?

There's so much here to stomp into the mud that I won't even bother. As my brain tried desperately to recover even as I read on (masochism, anyone?), I noted the photo credit. Dr. Bryan Jepson, Thoughtful House Center for Children. I turned the page. There was a "sidebar" that included a plug for and picture of the cover of Jepson's book, Changing the Course of Autism: A Scientific Approach for Parents and Physicians. And the "expert" quoted throughout the article? Why, the good Dr. Jepson himself. Oh. This is not an article. It's dressed like one. It's bylined like one. But it's really one big long advertisement for Jepson and Thoughtful House. Hope they paid good money for it.

Good Lord. It quotes the good doctor as saying, "Many people say that autism is genetic. But studies show that is not the case. Autism has been studied extensively in genetics, yet only 3% of those affected have a genetic component." WHAT? And then, in the very next quote, he says, "Autism appears to have a genetic predisposition that is triggered by the environment." Dr. Jepson, do you always argue with yourself like that? How do you feel about arguing with actual scientists who are working in the genetics of autism, like, say, these folks at MIT? What have you got to say about the findings of twin studies that directly contradict these unsupported statements? These, by the way, are rhetorical questions. I'm not interested in such a conversation.

I understand that this "magazine" relies completely on advertising dollars, given that it is a free, four-color glossy pub. But that's no excuse for parading nonsense and misinformation in the guise of a bylined, allegedly "journalistic" article that begins with a string of false, unsupportable assertions and relies solely on one "expert" who's got a big, fat, moneyed dog in this hunt. This piece is a huge disservice to so many stakeholders in autism. I encourage anyone who reads this to contact the editors of this magazine at editor@austinwomanmagazine.com and let them know what a gross misrepresentation of autism this is. One question you might ask is, Why aren't the full-page ads for liposuction and breast enhancement enough?

13 comments:

Jeannie said...

I don't even know how to respond. I hate how much misinformation there is out there with autism. Autism is defined in the DSV-IV. None of the crap this person wrote is consistent with that description.

Here's a post where I list the DSM-IV definition: http://mamabusypants.blogspot.com/2009/02/word-doesnt-change-kid-autism-101.html

Great post!
Jeannie

spectrumbeach said...

OMG. Such crap. And unfortunately when you put something in print, in a "magazine", people believe it. Because its in print. So it must be true. ARG.

I'm sending an e-mail.

Hammie said...

Gawd, I know you like to be clean and christian Emily but Fur Fecks Sake!

Gee, here I was participating in the Human Genome Project which has mapped 97% of the genes common to autism and it turns out to be all about the toxicity?

Emily, I am sorry to read that you are going for a Mamo. I hope it is purely routine and you get the result you want. I had the same experience last monday and for now please god it seems to be soft moveable tissue.
Lucky I had the forethought to bring a Mma Ramotswe and the No 1 Ladies Detective Agency in my large handbag or I might have been forced to read the load of merde that you encountered.
xx

Mom26children said...

As a fellow Woman from Austin, I am disgusted by this article.
Every stinking news show here in Austin revolves around The Thoughtful House.
I had dealings with them 4 years ago..I am so glad I came to my senses.
They are very dangerous, I believe, to Autistic children. Nothing but a colonoscopy factory.
When did GI issues get in as part of the diagnosis????
Geesh...
Now my blood is boiling..

I hope you mammogram turned out okay...they are so pleasant, aren't they?

Mom26children said...

Here is the letter I sent...

What Is Autism?
Autism is a neurological disorder. It is not GI issues !!!
It is not the "unethical and untested" treatments given by doctors at The Thoughtful House.
Autism is not heavy metal poisoning or too much toxicity in the body.
What Is Autism?
Autism, in my house is age 18, severe autism, junior at regular high school with an aide...honor roll.
Age 14, Aspergers..regular high school honor roll.
Age 12, PDD-NOS..regular middle school....honor roll.
Age 9, PDD-NOS..regular elementary school...honor roll.
Age 8, Severe Autism, regular elementary school..lifeskills program with inclusion.
It is not sedation with a colonscopy. It is not the elemental diet fasting. It is not Hbot chambers. It is not chelation.

It is hard-working therapists who work hard to help our children be able to live in a society that wants to "cure" them so desperately.
My children are not broken, they need to adapt to a society that so readily wants to make them better. They are pretty amazing to me already.
If you really want to see autism, give me a holler... I will introduce you to some pretty amazing people...

Emily said...

Sorry...I should have made clear that this was just a routine mammo. Those of us over 40 are supposed to do that yearly, although I'm thinking of going every 2 years, at most.

SB...it is such crap. Hammie...clean and Christian? Moi? ;) A bit off topic: I love the No 1 Ladies! We're watching the series of that on HBO, and it's just like the books, I think. Mma Hammie!

Mom26...my blood, too. I really almost had a coronary when I started reading that last night.

Becca said...

I hear you. I was on Craigslist the other day (looking in the childcare section) and a woman posted something about looking for "green" childcare and stating that there are studies that "prove" that autism is linked to cleaning solutions. Yeah, if we'd just chelate the Windex, our son would be fine!

And a woman I met with from the county, who was trying to explain the whole Medicaid/TEFRA thing to me, said that "Vitamin D supplements could help because they remove heavy metals from the body."

People just toss this stuff off, now, with little thought. It seems like it's become accepted truth -- which is horrifying.

Brenda said...

Thank you for blogging about this,
Emily. Misinformation like this is so wrong. There's so much truthiness surrounding autism, as Stephen Colbert defines it: if you say something often enough, it becomes true. For people who don't yet know enough about autism, it's unfair and unethical. No wonder people really don't understand what autism is. Keep up the investigative reporting, girl!

Perky Skeptic said...

I'm being an irresponsible mammogram slacker until age 50. I've decided to follow the NHS recommendations instead of the CDC ones, for no other reason than it keeps me from getting squished for another 9 years.

Colonoscopy, on the other hand, that's one I'll have to be responsible about, based on family history. Oh, well! Just think! If we lived in ancient times we'd probably all be dead by now! All this is GRAVY, baby!!!! :D

Laura said...

Living and working in the Autism field in Austin I join you in your frustration. We don't know for sure what the cause is or how to "fix" it... don't exploit parents' fear for marketing.

Liz Ditz said...

The biomed/Thoughtful House/Wakers/ Age of Autism/Jenny McAutism/ bilge about autism is like the Hydra -- the more their heads are taken off, the more they multiply.

The "green our vaccines"/"too many too soon" dogma has even invaded the parents of college age students, questioning the need for pertussis & meningitis boosters before college.

Mom26children said...

-----Original Message-----
From: Darline Turner-Lee
To: Mom26children@aol.com
Sent: Mon, 20 Apr 2009 2:39 pm
Subject: RE: What is Autism

Dear Ms. O'Donnell,

As the writer of the "What is Autism" article, I am responding to your editorial comment.

First off, Autism is classified as a neurological disorder, but that description is believed by many
clinicians who work with children with autism to be incomplete. There is overwhelming evidence that
many of the neurological manifestations of autism are the result of abnormalities in affected children's
gastrointestinal tracts and immune systems. Many scientists and clinicians, those of Thoughtful House,
The CARE Clinics and others believe that doctors have to look at and treat the other systems in order to
effectively manage autism.

As a mother of 4 children with Autism Spectrum Disorder, I am sure that you have seen
a wide range of symptoms and had to try a wide range of treatments in order to help your
children to be able to function and mainstream to the high degree that they are currently.
Thankfully for you, you found conventional treatment plans and therapist that have worked
for your situation. Unfortunately, that has not been the case in many other situations. For many
other families, when conventional treatments and therapists gave them no hope at all, using alternative
treatments such as dietary modification, chelation therapy, Hyperbaric Oxygen, supplements and others
has meant the difference between their children being able to focus and mainstream into public schools
and being unable to function, interact with others or to participate in society.

It is not anyone's right (yours included) to declare that a treatment is wrong or ineffective if they have not used it,
it was not effective in their situation or if other people are using it-whether successful or not. Parents of
autistic children, like parents of children with any type of medical disorder, are simply trying to get help
for their children. When one treatment or therapist doesn't work for them, they must move on to something else.
Every parent makes difficult decisions for their children. These are choices that many parents made and while
you and others may not believe in the treatments offered by these facilities, that does not mean that they are not valid,
are not effective or that they cannot be discussed.

The doctors at both Thoughtful House and The CARE Clinics are not practicing outside the scope of skill,
they are not doing anything unethical nor are they harming the children that they treat. They provide ANOTHER
MEANS by which children on the Autism Spectrum Disorder can manage their symptoms and be able to focus, control
their movements, learn and become integrated into our society. I found that to be worthy of reporting and so I did.

What you don't know and what will be presented in Part II of this series is that the aforementioned "alternative"
therapies in conjunction with therapies such as Applied Behavioral Therapy and DIR Floor Model Therapies
are giving children a chance at functional independence. So no, The work of dedicated therapists is not discounted.
They will be presented. Autism is a multifactorial disorder and many therapies have to be integrated for treatment to be
effective.

We are all individuals and what will work in one person is not guaranteed to work in the next.
If we become so narrowminded as to believe only what we can see and only what resonates with our belief systems
we are going to miss out on a bounty of good therapies and I don't want that to happen.

Thank you for your response.

Darline Turner-Lee
Physician Assistant, ACSM Clinical Exercise Specialist, Health Care Writer
Next Step Fitness, Inc and Bedrest Comfort & Care
6705 Hwy. 290 West, Ste 502 #283, Austin, TX 78735
www.nextstepfitness.com
www.mamasonbedrest.com
darline@nextstepfitness.com
darline@mamasonbedrest.com
512-288-0827


This is my response back to Darline:

Thanks for your reply. I must tell you, I have 5 autistic children, not 4.
Your article was titled "What Is Autism"?
You did not define it. You put what The Thoughtful House decided it is.
Autism is not defined as gastrointestinal. No where in the DSM-IV is
gastrointestinal listed.
Autism is not toxic overload. That is what The Thoughtful House is
defining it as.
I found it very irresponsible reporting and yes, that is my opinion.

2 of my children are severely affected by autism. My oldest, 18 years old...
and my youngest, 8 years old. My oldest received all vaccinations...my
youngest received NONE...
My 14 year old has Aspergers.
My 12 year old and my 9 year old were both diagnosed with severe autism and
now are PDD-NOS...both fully inclusioned in regular classrooms in regular
schools.
Why is this not being reported?
They did not receive any chelation, any biomedical interventions, any Hbot
any B12 shots, and any ABA or RDI. They have not been physically invaded through
colonoscopies or lumbar punctures.
What they did receive was OT, Speech, Play and Physical Therapies with a stress
on Sensory Integration.
Why is this not being reported?

Why, because it is not sensationalistic enough, that is why.

If I sound angry, I am not...I am just irritated with the media's need to represent
Autism in a one deminsional way..the biomedical Jenny McCarthy-Thoughtful House
way. That is not good journalism, but makes a good story, right?

There is a new program starting at the University of Texas called UTAP-
University of Texas Autism Program.
They implement Sensory Integration Therapies and have found great success.
I hope to heck they will be included in future media reports..you know,
fair and balanced.

Unless you have a child on the spectrum, you have know idea what some parent's will
do to cure their children. Places like the Thoughtful House know this. They happily
take the money these parent's are willing to hand out for false promises.

I am a mother living in Austin and believe me, your magazine does not represent me.

Jeanette O'Donnell

Jeannie said...

This so needs to be its own post (her response and yours back to her.) Also, if you're not a writer on Autism Sucks, talk to Send Chocolate (go to autismsucksrocks.blogspot.com) and see if you can become one (there are many writers on this site.) This would be another wonderful forum for this discussion.

Keep us posted.