There has been some idiocy in recent days regarding autism being a "scam". Another celebrity (if one can call either party that) referred to the parents concerned about the autism/vaccine link as "parasites." Regarding the people touting these beliefs, I will not add to his or her infamy by rebroadcasting or reprinting their remarks; the latter has made some weak apology, and the former is doubtless enjoying the sensation they have caused.
But these recent incidents have me very concerned. In the past ten years since my oldest son's diagnosis, we as a nation have gone from thinking of autism spectrum disorder as a rare, "orphan" disease to a neurological condition affecting as many as 1 in every 150 children, primarily boys. I remember very well, after the developmental pediatrician's shocking proclamation ("Oh, he's autistic, of course!" she said, just like she was telling us Ben had the measles, not to worry), doing what any good journalist would do -- going to the library to find something, anything about this strange disorder -- and finding three books in all of the Los Angeles Public Library's vast holding that were aimed at parents. Now, if you do a search at lapl.org on the word "autism," you will find 75 items; "autism in children" will net you 62, and even as specific a subject as "parents of children with autism" show a comfortable 21 texts. (There is even a book about how to talk to the parents of children with autism -- perhaps I should send that blunt doctor a copy.)
However, the very public gaffs (or deliberate incitement) of the past week show that the pendulum bringing autism out of the Dark Ages may be swinging back. What was the darling disorder of TIME and Newsweek for the past couple of years -- it even has its own month, April, thanks to the efforts of several autism awareness groups -- is now being blamed for sapping school districts of needed funds, causing a public health crisis from parents who refuse to innoculate their children against serious diseases (however you feel about the topic) and now, being at the root of what some consider the weakening of parental control in our society. ("Spare the rod and spoil your child into being autistic!" these critics shout -- making one wonder what James Dobson et al. would do if they actually had an autistic child or grandchild.)
It is similar to what has happened, sadly, with Attention Deficit Disorder, which in the late 1980s to mid-1990s started to be taken more seriously by researchers -- only to end up as an excuse to sell parents and teachers on the joys of Ritalin. Granted, there was likely some over-diagnosing of children and teens with this disorder; however, many kids who could have been helped by learning more about effective ADD therapies are now suffering because no one wants "that label" anymore.
And this is what I fear may happen with autism. There is already enough stigma attached to the "A" word. Some parents, myself included, talk about our kids having Asperger's Syndrome because it doesn't sound quite as bad (and because the public is just educated enough to know that "Aspie" kids are supposed to be geniuses). If this is the situation with educated parents, who already know what their children need, how in the world will this affect the parents of children not yet diagnosed? Because there will be parents out there whose child is on the autism spectrum who fail to get that child the intervention they need -- all because people around these parents convince them that what they need to do is discipline that child and he or she will stop being autistic. And G-d only knows what kinds of discipline they may turn to in the name of "fixing" their little boy or girl.
All the studies show, and common sense dictates, that early intervention using positive reinforcement -- whether ABA or floortime or whatever methodology fits -- makes a huge difference in helping children with autism to be functional, productive and, we hope, happy human beings. But these methods cost money -- money that often has to be provided through government agencies. How likely is the public to continue funding programs and specialists for children on the autism spectrum if they believe that it is the parents' fault these kids are the way they are?
A long time ago, in the 1950s, a man called Bruno Bettelheim made a name for himself as a therapist by purporting to study and write about autistic children. The cause of their illness, Bettelheim found, was a basic lack of attachment between the child and his or her primary caregivers. The result? As shown in the documentary "Refrigerator Mothers," the children were removed from their homes -- in some cases literally torn away from their grief stricken moms and dads -- and institutionalized, with the idea that they would do better away from their parents' harmful ways. "If anything could be more devastating to a mother than having her child succumb to autism, it might be having to shoulder the blame for the affliction...Though wholly discredited today, the 'refrigerator mother' diagnosis condemned thousands of autistic children to questionable therapies, and their mothers to a long nightmare of self-doubt and guilt" (http://www.pbs.org/pov/pov2002/refrigeratormothers/aboutthefilm.html).
Just like the ill-informed and heartless treatments of the 1950s, the harm being done by today's self-serving celebrities is unconscionable. It is up to the parents, the grandparents, the aunts, the uncles, the teachers, the school personnel, the doctors and nurses and occupational therapists and behaviorists and camp counselors and neighbors and friends -- indeed, anyone who has ever loved a child with autism -- to see that the evil legacy of Bruno Bettleheim and his ilk does not destroy the progress we have made.
Sunday, July 20, 2008
Thursday, March 13, 2008
Why We're Going Gluten-Free
We're all on the gluten-free diet over at my house — and, in spite of the expense, the hassle, and the sabotaging by some unenlightened humans, it's actually helping.
Let me explain: my husband was the first to try going gluten-free. He's had digestive problems all his life, and spent the last few years eliminating first one thing, then another. When he finally locked onto the GF diet, it made such a difference he wanted the rest of us to give it a go.
This wasn't just a whim. My older son, who has Crohn's, juvenile rheumatoid arthritis and high functioning autism, underwent allergy testing last month and showed a strong reaction to casein, which he's had problems with since he was a baby. (He broke out in hives upon his first taste of yogurt at six months, then had no dairy until age two, when it seemed fine. Makes me wonder...). He's on so many medications, some with very serious side effects, that just to be able to reduce his meds is one of our major goals.
Then there's my youngest, who is borderline on the autism spectrum. He's had bouts of bad behavior at school and so many tantrums and mood swings, we were willing to try anything to help him get it under control.
As for me, I've fought eczema and anemia for years, along with a host of other, more serious health problems. The latest battle has been with this strange skin disorder no one seems to be able to diagnose. It makes me itch like crazy most of the time, and about 50 percent of my body is covered with a rash that matches side to side. Despite this evidence, I've been treated more dismissively by medical professionals this past year than ever in my life. One doc's solution was to put me on antibiotics, to which I had a huge allergic reaction; another responded to my plea for something to stop the itch by telling me to "go soak in a tub with some Clorox."
Finally, the one doctor I trust — who's in a totally different branch of medicine — told me she really wanted me to go get a colonoscopy. It was part of her standard procedure for her patients, but she was also troubled by a test showing me leaning heavily toward osteoporosis, despite my age (40ish). The moment of ultimate irony occurred when the gastroenterologist to whom she referred me, after taking a health history, paused and told me he'd like to do more than a colonoscopy: he'd like to biopsy my small intestine.
"Well...sure, but why?" I asked.
"Have you ever heard of celiac disease?" he asked. Ding, ding, ding, ding, ding!
At this point, I had already been experimenting with cutting out the gluten. The doctor — let's call him Dr. M. — told me I couldn't do that; I must eat as much gluten as possible, in order to get an accurate test result. I tried to follow his directions. For the next four days I ate two bagels a day, munched on my school cafeteria's evil coffee cake (the same recipe they'd had since I was in high school — that stuff's got to be chock full o' gluten) and toasted every wheaty thing I could toast. Unfortunately, it only took three of those four days for my symptoms — digestive, dermatological and depressive — to return, even worse than before.
So after considering how awful I felt, and believing that the $950 out of pocket the endoscopy would cost me could be much better spent elsewhere, I decided to just go on the diet, along with everyone else. I realize this may not be optimal in terms of a diagnosis, but if I feel better and my family starts to heal, then maybe that is all the proof we need.
ADDENDUM July 2008
In the interest of honesty, I need to say a few words about what turned out to be an enlightening, but mostly failed, family experiment.
The results were, at best, mixed. For my husband, going gluten free seems to have helped him to lose weight and to feel better. For me, after further tests it looks like it is unlikely I have celiac disease, but I may have an allergy to wheat (we'll know in a few weeks).
As for the children -- this was actually my second gf/cf diet experiment for B., and both times it turned out poorly. The first time, back in 2000, there were very few decent-tasting foods I could substitute for his usual diet (chicken nuggets, anyone?), and after three weeks there was no substantial change in his health or his behavior. This time, we had plenty of delicious substitutes, but he lost so much weight in such a short time, with no improvement in the Crohn's, that it was detrimental to continue and we stopped after six weeks.
And then there was our youngest. Z., whose stubborness is matched only by his cunning, found every possible way to "cheat" on the diet, to the point where he was actually paying other kids to let him eat some of their lunch. He also knew to go for snacks to certain teachers in the after-school program, the ones who were new and not up on all the kids yet. (You have to admire his determination.)
The real moment of enlightenment came when we visited my parents one day during the six weeks. I had brought with us some wonderful gluten-free cookies from The Sensitive Baker in Culver City. For the first twenty minutes we were there, Z. was content to toss a baseball back and forth with my dad. Then he came inside and ate a cookie. Within minutes, he was trying to sit upside down in the living room chair. He bounced off the furniture, chattering away non-stop like a frantic chimpanzee. I looked at the label and what do you know? The cookies had about three times as much sugar as a bowl of Cap'n Crunch (the standard by which I measure all things sugary). So his problem isn't the wheat -- it's the sweet!
Overall, I would still tell parents to try the gf/cf diet if you feel it might help your child -- but you MUST do it under the supervision of a doctor and/or nutritionist. Even with monitoring B. closely, it was the visit to his gastro that showed us this diet was too extreme -- and ultimately ineffective.
Let me explain: my husband was the first to try going gluten-free. He's had digestive problems all his life, and spent the last few years eliminating first one thing, then another. When he finally locked onto the GF diet, it made such a difference he wanted the rest of us to give it a go.
This wasn't just a whim. My older son, who has Crohn's, juvenile rheumatoid arthritis and high functioning autism, underwent allergy testing last month and showed a strong reaction to casein, which he's had problems with since he was a baby. (He broke out in hives upon his first taste of yogurt at six months, then had no dairy until age two, when it seemed fine. Makes me wonder...). He's on so many medications, some with very serious side effects, that just to be able to reduce his meds is one of our major goals.
Then there's my youngest, who is borderline on the autism spectrum. He's had bouts of bad behavior at school and so many tantrums and mood swings, we were willing to try anything to help him get it under control.
As for me, I've fought eczema and anemia for years, along with a host of other, more serious health problems. The latest battle has been with this strange skin disorder no one seems to be able to diagnose. It makes me itch like crazy most of the time, and about 50 percent of my body is covered with a rash that matches side to side. Despite this evidence, I've been treated more dismissively by medical professionals this past year than ever in my life. One doc's solution was to put me on antibiotics, to which I had a huge allergic reaction; another responded to my plea for something to stop the itch by telling me to "go soak in a tub with some Clorox."
Finally, the one doctor I trust — who's in a totally different branch of medicine — told me she really wanted me to go get a colonoscopy. It was part of her standard procedure for her patients, but she was also troubled by a test showing me leaning heavily toward osteoporosis, despite my age (40ish). The moment of ultimate irony occurred when the gastroenterologist to whom she referred me, after taking a health history, paused and told me he'd like to do more than a colonoscopy: he'd like to biopsy my small intestine.
"Well...sure, but why?" I asked.
"Have you ever heard of celiac disease?" he asked. Ding, ding, ding, ding, ding!
At this point, I had already been experimenting with cutting out the gluten. The doctor — let's call him Dr. M. — told me I couldn't do that; I must eat as much gluten as possible, in order to get an accurate test result. I tried to follow his directions. For the next four days I ate two bagels a day, munched on my school cafeteria's evil coffee cake (the same recipe they'd had since I was in high school — that stuff's got to be chock full o' gluten) and toasted every wheaty thing I could toast. Unfortunately, it only took three of those four days for my symptoms — digestive, dermatological and depressive — to return, even worse than before.
So after considering how awful I felt, and believing that the $950 out of pocket the endoscopy would cost me could be much better spent elsewhere, I decided to just go on the diet, along with everyone else. I realize this may not be optimal in terms of a diagnosis, but if I feel better and my family starts to heal, then maybe that is all the proof we need.
ADDENDUM July 2008
In the interest of honesty, I need to say a few words about what turned out to be an enlightening, but mostly failed, family experiment.
The results were, at best, mixed. For my husband, going gluten free seems to have helped him to lose weight and to feel better. For me, after further tests it looks like it is unlikely I have celiac disease, but I may have an allergy to wheat (we'll know in a few weeks).
As for the children -- this was actually my second gf/cf diet experiment for B., and both times it turned out poorly. The first time, back in 2000, there were very few decent-tasting foods I could substitute for his usual diet (chicken nuggets, anyone?), and after three weeks there was no substantial change in his health or his behavior. This time, we had plenty of delicious substitutes, but he lost so much weight in such a short time, with no improvement in the Crohn's, that it was detrimental to continue and we stopped after six weeks.
And then there was our youngest. Z., whose stubborness is matched only by his cunning, found every possible way to "cheat" on the diet, to the point where he was actually paying other kids to let him eat some of their lunch. He also knew to go for snacks to certain teachers in the after-school program, the ones who were new and not up on all the kids yet. (You have to admire his determination.)
The real moment of enlightenment came when we visited my parents one day during the six weeks. I had brought with us some wonderful gluten-free cookies from The Sensitive Baker in Culver City. For the first twenty minutes we were there, Z. was content to toss a baseball back and forth with my dad. Then he came inside and ate a cookie. Within minutes, he was trying to sit upside down in the living room chair. He bounced off the furniture, chattering away non-stop like a frantic chimpanzee. I looked at the label and what do you know? The cookies had about three times as much sugar as a bowl of Cap'n Crunch (the standard by which I measure all things sugary). So his problem isn't the wheat -- it's the sweet!
Overall, I would still tell parents to try the gf/cf diet if you feel it might help your child -- but you MUST do it under the supervision of a doctor and/or nutritionist. Even with monitoring B. closely, it was the visit to his gastro that showed us this diet was too extreme -- and ultimately ineffective.
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