Friday, November 18, 2005

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.”

9 Comments:

Blogger Wade Rankin said...

The problem with doing long posts is that someone always seems to beat me to the punch. In this case, it was Patick Sullivan, Jr.

11/18/05, 10:52 PM  
Blogger Kristina Chew said...

Not at all, Wade. Reading this on Injecting Sense endows your report with meaning beyond words, indeed.

11/19/05, 12:59 AM  
Anonymous Patrick Sullivan Jr. said...

As always Wade, great commentary.

As I read the last section where you were writing about about how Humza is apparently a great student now, I couldn't help but think about a statistic I heard recently -- between 1 in 3 and 1 in 6 kids now have some form of learning disorder or attention difficulty.

Maybe autistic kids like Humza who recover via biomedical treatments seem to be that much smarter than their peers because for these kids, so much attention has been put into getting out toxins and putting in nutrients? In comparison, their peers that didn't regress into the autism spectrum but do have ADD and the like just take a steady diet of ridalin and junk food.

I may be generalizing too much that the theory is fatally flawed, but it seems that there could be some logic to this.

Btw, I just realized that my little theory here may come across sounding like, "autistic kids who recover are not special/gifted, their non-autistic peers are just stupid in comparison." That is not at all what I'm saying. So please do not read it that way.

11/19/05, 7:23 PM  
Blogger Anne said...

Wade wonders "how many nine-year olds correctly use the word 'procrastinate?'"

Most 9 year olds wouldn't use the word even if they knew it because it would make them seem nerdy.

When I read that article, I thought that nothing in it seemed inconsistent with Humza being a delightful autistic little boy.

Anne

11/19/05, 11:59 PM  
Blogger Wade Rankin said...

I can only assume that Anne's comment implies an opinion that Humza remains autistic, and has, therefore, not been "cured" of anything. That begs the quesiton of what a "cure" means. In this case, the Iqbals had a young man who had a number of problems associated with his diagmosed condition of autism. They embarked on various interventions, including biomedical protocols. One could argue whether they were treating autism or comorbidities of autism, but I have a feeling that Sara Iqbal would laugh at the argument. I doubt whether she cares what was being treated or whether her son has officially been "cured" of his autism. The important thing for her, no doubt, is that Humza has friends, that he can engage in social interaction in an age-appropriate manner, and that he is able to communicate not just his intellectual gifts but also his feelings. I'm sure that if someone wants still to call Humza autistic, his mother can live with that; she's got the letter.

11/20/05, 5:34 PM  
Blogger Anne said...

One could argue whether they were treating autism or comorbidities of autism, but I have a feeling that Sara Iqbal would laugh at the argument.

Why would you think that? Is the idea that an autistic child could succeed in the classroom, given accommodations like the classroom aide that Hunza has, ridiculous to you? Does the idea that an autistic kid can be successful if the conditions are right make you laugh? It seems to me that this kind of thinking would create something of an obstacle in approaching an autistic child's educational needs.

Do you believe that no autistic 9 year old could participate in limited structured social contact (at school, on "play dates"), or love his mother and write her a nice note, or speak out loud? If so, then you are badly mistaken.

Based on the article, Humza seems like a really great kid who is working hard to create a good interface with his school and his parents. Why deny him the credit that's due? He deserves to be happy, successful, and to live an authentic life as an autistic person. His mom is right; there should be no stigma attached to it. Even if he is not "cured."

11/23/05, 10:09 PM  
Blogger Wade Rankin said...

No Anne, I don't find it laughable that "an" autistic child could be capable of all that. I know many are. Many more, however, are not and won't be without intervention of some kind. Humza's mother obviously feels that her son would not have been capable without intervention, and she obviously feels the most important inetervention for her son was a biomedical protocol. My comment only meant to imply that Sara Iqbal is undoubtedly less interested in our little debate over the whys and hows than she is with her son's progress. As a parent I can relate to her joy.

11/23/05, 10:49 PM  
Anonymous viagra online said...

This comment has been removed by a blog administrator.

7/12/10, 11:04 AM  
Anonymous Anonymous said...

you don't know what he had to go through. I'm his younger sister here and i witnessed all of it.

3/11/11, 7:30 PM  

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