Tuesday, May 09, 2006

Autism & Snake Oil Salesman

An Autistic Kid graces Time Magazine's cover this week. It is causing controversy. (Is there an article on Autism that doesn't?) This Controversy Du Jour is Facilitated Communication--a method, with little scientific support, where a teacher guides the child's hands to a letter and the child pushes it. Most research says it's nonsense. Adherents swear by it.

Over at Scientific American, where I linked before, John Rennie states that Time did a disservice to its readers by blandly covering Facilitated Communication. He thinks they were irresponsible to not clarify the controversy and worse, frame FC as an acceptable treatment for Autistic Kids.

Newsflash Mr. Rennie, nearly all Autistic treatments either suffer from lack of evidence or shoddy evidence. The well-researched and scientifically supported treatments like Applied Behavioral Analysis (ABA) work effectively only 50% of the time--hardly a ringing endorsement when it costs upwards of $50,000 per year for a family to do it.

Meanwhile, very successful treatments, such as B-Vitamin therapy receive scant support from the Medical Community even though plenty of research demonstrates effectiveness. It's just not sexy enough, I guess. And it's a pain in the ass of the parents trying to get the nutrition down the kids. But it works a lot of the time. (Bernard Rimland has been the recipient of scorn since advocating nutrition as an Autism Treatment. He was one of the first ABA supporters, but his cheering section went quiet once he started to use lowly Vitamins and Minerals.)

Mr. Rennie rightly notes that families with Autistic children are ripe for Snake Oil Salesman. We are. Parents desperate to help their children, to help themselves, will do almost anything to unlock the life inside that child. They know it is there, because there are flashes of him. Moments of perfect lucidity, mixed in with the mash of mad mannerisms and machinations, taunt the parents. And then medical professionals accuse the parents of delusion.

The problems in the Autism field are multifold:

  1. Each child is so individual, what works on him or her, is not necessarily going to work on someone else. That isn't to diminish the effectiveness on him or her.
  2. Many doctors, parents, helpers hold beliefs at odds with other doctors, parents and helpers. Such as: some people believe Autism can be overcome. Some don't. This basic belief changes how everyone interacts with the child.
  3. Beliefs lead to different "Plans". Some plan to get a child to "survive in society" others hope that the child will succeed using his or her talents.
  4. The success of the child's treatments depend to a HUGE degree on those working with the child. A successful Autism teacher, therapist, etc. must possess intelligence, patience and most of all, a deep abiding love for kids with Autism. Anything less and the child feels the lack of love. They are like animals that way. Often a child viewed as "hopeless" just hasn't had the right people working with him. Parents sense this and feel helpless in the face of such a daunting task.
  5. Parents are alone. Insurance won't cover Autism treatments, because they are "unproven". Schools often have undereducated or undermotivated teachers in Special Ed who have a wide variety of children to reach. Understaffed, too busy to learn the latest, and not beholden to the same standards General Ed classes are held to, the kids get passed along, passed along, passed along. And, like my kid, with great grades! Woo Hoo! A 98% in math--never mind it's what Kindergartners are doing.
I have seen Facilitated Communication work. Actually, there was a whole PBS, I think, documentary on a girl who was believed to be mentally retarded, but they found to have a genius I.Q. The problem was (as it is with most Autistic people) expressive language. Once she could communicate she blew everyone away. She needed help to steady her hand. The idea that her aid was doing her work, was laughable. The aid did not possess the reasoning and skills to do the work the Autistic woman could. She needed help though, because something akin to an Intention Tremor occurs with her--many Autistic people have what might be called a Mental Intention Tremor, a mental stutter that makes expression very difficult. I'm not quite ready to banish Facilitated Communication. This girl would be lost.

I snuck into Applied Behavioral Training and got certified with a bunch of Teachers doing continuing education here in Houston. I wasn't the only parent there. The teacher was a world-renowned expert in the field. Many of his techniques helped me break through with my son. But ABA has limitations--namely that the repetitive training done the traditional way rarely translates into real life situations. A lot of drilling and flashcards may help some, but it takes more work to get a child functioning in real life. (By the way, the Teachers were largely disinterested and few paid any attention. The parents, however, were riveted and asking all the questions.)

I've met Dr. Temple Grandin, perhaps the most popular adult Autistic person. Tony Attwood, PhD gives great seminars and has put an awesome program in place in Australia. Would that the U.S. might try the same here. I've read most of the books. I'm personal friends with some of the best researchers in the nutrition field. I've talked on the phone to the lead researcher at Yale Child Studies.

And there are still no bullet proof answers.

Finally, in desperation, I dragged my husband to a seminar at The Option Institute, where Barry Kaufman, a father of the now-grown Raun Kaufman, taught. It was a week-long exercise in what many high-minded "Scientists" would call snake oil. It was anything but. There, my husband and I learned how to help our son. The principles we learned there guide us to this day. Learn more at Autism Treatment Center of America.

On the back-drop of their Son-Rise program, we use diet aids, we use ABA, we would like to take him to swim with dolphins, we detoxed him. He receives speech therapy, occupational therapy, physical therapy. Therapy. Therapy. Therapy.

We try it all. He is doing far better than some children who started off better than him. If we had stayed within the "acceptable scientific perameters" he'd be where he was and worse than the other kids.

We believe Autism can be overcome. Why not? It beats believing that it is a curse without cure. So far he exceeds most peoples (besides us) expectations. "He does so well......for an autistic kid." Is what people say. "Kiss my ass," is what I say.

And "Kiss my ass" to the Scientists who have dismissed parent's reports that their child was developing normally and then went backwards. And "Kiss my ass" to the Scientists who get lost in the tiny twigs of the mind, when Autism involves the executive functioning of the frontal lobe, the auditory integration and language developement of the temporal lobe, the visual processing centers, the amygdala and, the second biggest bunch of neurons in the body the Gut! Autism is a BIOLOGICAL disorder as much as it is a neurological disorder. It is an immune disorder. It is most definitely genetic, but has environmental triggers. It affects the musculo-skeletal system much in the same way Muscular Dystrophy does.

It is complex. A parts-is-parts study won't find the cure. Too many interlocking features contribute to the problem. All of this points to an environmental toxin of some sort. What, suddenly, in this millenium a new, pervasive genetic disorder appears and has no link to the environment? Doubtful.

Anyway, while I can appreciate the fears of Scientists about Facilitated Communication, I trust the parents to filter the garbage and find what is good for their child. I'm not fan of junk treatments, either. But for all the high and mighty researchers out there I'd like to remind them that "Science's" Autism Treatment once included locked boxes where the child was exposed to sensory deprivation to "extinguish" behavior. Thank you, Dr. Skinner.

Science needs to keep up the work. In the mean-time, limiting treatments for a Disorder so broad and difficult to define, never mind treat effectively, is, quite simply, wrong. Parents make choices every day for their children and tiny advances can be huge for them in way a detached scientist can't understand. For example, getting an autistic child potty-trained is a rite of passage. The methods to accomplish this routine developmental stage are wide and varied for normal children, forget autistic children. Should the treatment arsenal be limited at this point (child abuse is not part of the arsenal, btw)? No.

On a personal note, my four year old echolalic son couldn't say his own name when asked, "What's your name?" Through ABA techniques I taught him that first. What was the second thing I taught him? "I love you." Nope, he didn't know what he was saying at first. Just like some kids don't know what they're typing at first with Facilitated Communication. But eventually he knew. He knows today. But I needed to hear it then. Can any parent imagine going four years without hearing, "I love you, Mama"? How about ten years? So ABA techniques are 50% effective. Some kids NEVER talk, 50% or more of them, NEVER respond to ABA. Yet, to teach my son expressive language, the ABA techniques were 100% effective. I'm not going to take away a tool that may help another mom keep going even if FC works for only 1% of people. For that 1%, it might make all the difference.


Barbara Cunningham said...

F.C. kept my son alive. Until he was introduced to supported typing at age 10, he was trying to kill himself, by running into the street, and lying down, ready to be killed by auto. Since F.C. Sean has experienced education in the mainstream, with a high-level aide in most cases. For his 11th birthday, he asked for the Periodic Table of the Elements, so he could memorize it. He can translate and write in French and Spanish thanks to loving caregivers from Peru and Paris, who also brought him books. He took a 98 in the National Latin II
test, when he was in 11th grade.
He completed his B.A. degree at George Mason University in May, 2005, and when he walked up onto the stage, his major-- psychology being last -- the 1,000 graduates started a wave of support:
"Sean! Sean! Sean!" they whispered up to a crescendo. He turned and looked at the crowd, and smiled
a huge grin.

F.C. may not work for some persons, but it presumes competence, and it allows for fluent language expression among those who may crave it the most.

Barbara Cunningham, Ed.D.,
mother of Sean D. Sokler

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