A NINE-YEAR OLD FINDS THE WORDS

You may be aware that a documentary, entitled Finding the Words, has been produced for airing on PBS. The film will examine the hypothesized link between vaccines and the onset of ASD, as well as the use of biomedical interventions. Originally scheduled for this past summer, it is apparently now slated for April. In the meantime, the San Fransisco Chronicle posted a story about one of the children featured in the documentary.

Nine-year old Humza Iqbal developed many of the signs of autism at an early age. Judging by the account in the Chronicle, Humza was profoundly autistic. Over the years, his parents tried various behavioral therapies, with limited results. Then, after seeking a way to help her son’s gastro-intestinal problems, Humza’s mother, Sara, found a new path.

She found information on the Internet about diets that were free of gluten -- wheat protein -- and casein -- dairy protein. Other parents said they’d found these diets alleviated gastrointestinal symptoms and resulted in behavior and learning improvements. She ordered videotapes about the dairy- and wheat-free diet and started Humza on one. She began attending conferences run by Defeat Autism Now, an education and advocacy group that believed autism could be treated biomedically.

In the first days of the diet, she agonized as he refused foods she offered him. But then, slowly, he started to eat pureed food. Within about three weeks, she said, she noticed a difference in his digestion problems and his behavior. After a month and a half on the diet -- and receiving behavioral therapy at the same time -- Humza began looking at his parents.

Sara Iqbal delved deeper into the biomedical approach, adding supplements and weekly intravenous glutathione treatments. As is commonly reported among those of us using a biomedical approach, the Iqbals noted the association between new improvement and the addition of new elements into the protocol.

And what was the result? This is the observation by Katherine Seligman, the Chronicle reporter:

He has grown into an articulate child who excels in school and has friends and play dates and all the ordinary trappings of a 9-year-old life. He comes home from school, does his homework (“I don't like to procrastinate,” he says the first time I meet him), then might read, pop in a video game or play with his sisters who, he admits, sometimes bug him.

Predictably, Humza’s pediatrician says he’s not sure whether the remarkable progress came about because of the behavioral therapies, the biomedical ineterventions or just the passage of time. But Humza’s mother has a definite opinion.

“Had we stayed with the conventional therapies, I don’t think we would have made the initial headway we made in the first month (with biomedical treatments),” said Sara Iqbal. “We’d add another supplement and boom, we saw a change. We looked at it as a disease. The more we started fixing, the more he improved.”

Is Hamza “cured?” The article does not use the word in relation to his progress; in fact Ms. Seligman notes that a part-time “special circumstance assistant” is still assigned to the young man by the school district. That aide, nevertheless, is rarely needed, and:

A school psychologist who observed Humza in early October found he consistently paid attention in class. He asked questions and practiced independently in his handwriting workbook. He got along well with other kids and they appreciated him, she wrote. Overall, she concluded, his social and academic behavior was “appropriate when compared to his peers.”

So Hamza clearly needs less help than most autistics in dealing with school. But again the question becomes whether he is “cured.”

A few weeks ago, I was part of what Ginger called a “blog swarm,” addressing the reason many of us are seeking what some call a “cure” to autism (see Why and Why, Part 2). One of the questions that came out of those posts was whether it was appropriate to cure the dysfunctions of autism when that same process might diminish the cognitive strengths that often accompany the condition. It was a fair question, and I concluded that potential improvement had to be weighed against potential improvement in individual cases.

The Chronicle article does not clarify what special abilities, if any, Humza had before his parent’s remedial efforts, or even whether he was able to even communicate any abilities or gifts he had. After the intervention, however, Hamza seems to be a child of above-average intellectual abilities. Just look at the second quote from the article above; how many nine-year olds correctly use the word “procrastinate?”

Humza has scored at an advanced level in math, and he also has literary interests. The following is from the interview he had with the reporter:

We started talking about what he likes at school -- P.E., especially a kickball game called Two Touch. And he loves reading – “Charlie and the Chocolate Factory,'” “James and the Giant Peach” and “Matilda,” although the author “doesn't use as much craft” in that one, Humza said.

Hamza’s story may just be an anecdote. I’m sure Sara Iqbal can accept that. It seems, though, that we hear more and more of these anecdotes every day.

Autism is different for each autistic person. There is no one-size-fits-all solution. But Sara Iqbal seems to have found an answer for her son. Of course, some do not think a solution is needed for their own condition; not everyone wants to be “cured.”

How does Hamza feel about being “cured?” The Chronicle article doesn’t specifically address that, but a clue might be found in a letter he wrote his mother.

In January, Sara Iqbal returned from a trip and was annoyed to find the house in such a mess and not one of her three kids willing to help clean up. Humza went upstairs to finish his homework, but came down later, handed her a letter and hugged her. “I thank you for everything not just now but always,” he’d written. “I fully thank you I can’t even write how much I thank you because it is way, way, way, way (x10) too long. Love, Humza.”