Health
Special Diets May Do Nothing Special
Published July 28, 2009 @ 12:49AM PT
A study by researchers at the Mayo Clinic and published in the most recent edition of Pediatrics has found that autistic children are no more likely to have gastrointestinal problems than children who are not on the spectrum. The medical records of 100 autistic children over an 18-year period were compared to those of more than 200 children as controls. 77 percent of the autistic children had common GI problems (constipation, diarrhea, abdominal bloating, reflux, vomiting); 72 percent of the control group had these. Researchers did find that the autistic children were more likely to have constipation (34 percent to 17.6 percent) and to be picky eaters (24.5 percent to 16 percent). Only one autistic child had Crohn's disease and none had celiac disease.
The study suggests that "special diets"---in particular the gluten-free casein-free diet, which many families have placed their autistic children---are not warranted as treatments for autism. As noted in the July 27th New York Times, placing an autistic child on a restrictive child should only be done "after having appropriate diagnostic tests done."
I'm one of many parents who have placed their child on "the diet." In the early days, we swore by it and policed every drop of food that went into Charlie's mouth and into our house --- we had many bagel-free, pizza-free years as a result. (Jim and I agreed, if we were not letting Charlie eat something, we would not eat the "forbidden" food in his presence---fair's fair.) I thought I saw changes in Charlie while on his food regimen, which overlapped with him starting an intense ABA home program.
Or was it that, I saw the changes that I was so wanting to see?
As Charlie got older, the diet became restrictive in more and more ways, namely, our vigilance about "NO cupcakes, not even a bite" at school parties for other students started to restrict Charlie socially. We gradually started him eating wheat; no big deal. Milk and other dairy products did seem to disagree with Charlie so we've still kept him off of those.
When Charlie was just diagnosed and everything was chaos and confusion, "doing the diet" made us feel that we were doing something, that we were somehow contributing to helping Charlie as we waited to get evaluations done, searched for therapists, set up a home program. Whatever its actual merits as a treatment, putting on Charlie on the diet did have the positive side-effect of getting him to have to try new foods (when we started the diet, he mostly ate carbohydrates; some days, he'd only eat chocolate chip cookies). Our search for "ok foods" led us to introduce Charlie to many ethnic restaurants and to this day his favorites include Vietnamese summer rolls and mien and sushi.
Regarding the researchers' findings of more constipation and picky eating, I found some of the commentary in the New York Times article of interest:
Dr. [Samar] Ibrahim suggested that the loss of appetite and difficulty gaining weight in autistic children may be related to the use of stimulant medications, which are often prescribed for the condition, and that the constipation may be due to children not consuming enough fiber or drinking enough water.
Well, maybe, but not every child takes stimulant medications. There have been times when Charlie has limited himself to very few foods and, therefore, eaten very little; we've learned that his food choices are sometimes rooted in his sensory issues. As for constipation---some children may simply not want or be able to use just any bathroom (i.e., they may insist only on using a bathroom at home, versus one at school or in a store or restaurant), and this insistence can lead to some interesting scenarios. One thing I've learned time and again in trying to figure out why something or other is going on with Charlie that the most obvious answer isn't always the one that turns out to be right.
Dentist Visits For Everyone
Published July 21, 2009 @ 02:24PM PT
Going to the dentist and getting his teeth checked without sedation or being restrained in something like a "papoose": This was one of the things I noted we've been able to teach Charlie through a lot of hard work, ours and most of all, his own. Yesterday's Las Vegas Review-Journal features Dr. Jeff Kinner, who has, for the past two years, reserved Mondays to see only autistic children. Kinner notes that sometimes he'll see a child three to four times before actually starting to work on their teeth; he draws on techniques of Applied Behavior Analysis learned from occupational therapists.
Certainly going to the dentist is all-out sensory over-stimulating (not to mention painful) experience. We've been lucky to find a pediatric dentist who also devotes some of his time to seeing children with disabilities. But will there be similar professionals willing to see Charlie when he's an adult?
Laugh and Be Happy
Published July 13, 2009 @ 04:00PM PT
Apparently there are two types of laughter--laughter as an unconscious expression of joy, and laughter as a conscious expression of social information. Guess which one an Ithaca study found autistic children do much more of? The good news for us is that people prefer listening to the unconscious, spontaneous type of laugher that many of us on the spectrum excel at. Spontaneous laughter is the sound of happiness.
On the happiness topic, a University of North Carolina, Chapel Hill study is all about how short, frequent moments of happiness lead to resiliency and well-being, that, as quoted from researcher Barbara Fredrickson),
"Those small moments let positive emotions blossom, and that helps us become more open. That openness then helps us build resources that can help us rebound better from adversity and stress, ward off depression and continue to grow."
...The study helps show that to be happy, people do not need to adopt a "Pollyanna-ish" approach and deny the upsetting aspects of life.
...Fredrickson suggested focusing on the "micro-moments" that can help unlock one positive emotion here or there.
Something probably especially important for those of us who live with a lot of stress. And perhaps something to be mindful of concerning--or even be an important reason behind--autism therapy fatigue.
More Stress on Stress
Published July 10, 2009 @ 12:27AM PT
Just last month I posted on an ongoing study about stress in the mothers of autistic children being done by researchers at the University of Wisconsin-Madison under psychologist Marshal Seltzner. Another study on stress in mothers of autistic children (we have more stress according to the study---findings I am not exactly surprised at) has been published in the most recent issue of the journal Autism.
Researchers at the University of Washington under Annette Estes, associate director of the University of Washington Autism Center, had 73 mothers fill out detailed surveys which measured: parenting stress, psychological distress, problem behaviors and adaptive functioning level (daily living skills). 51 of the children were on the autism spectrum and 22 had developmental delays. Most of the children were under 3 1/2 years old, male, and white.
Estes (in a Science Daily post) noted that it was "psychological stress" and not psychiatric disorders that was tested and I'm glad for that distinction. While it's possible that women with a history of psychiatric disorders might be more prone to stress, it would be inaccurate, and potentially misleading, to make any kind of connection between mothers of autistic children. Regretfully, such a connection was quite readily made by the likes of Bruno Bettelheim and others in a previous generation, and this is certainly one reason that there's more than some wariness in approaching the topic of stress in parents (and mothers in particular) in autistic children.
Back to the University of Washington study, which suggests that parenting an autistic child is more stressful than parenting than a child who is not disabled: I suspect that most parents, and most mothers, of children on all parts of the spectrum, would answer in the affirmative. My son has been doing well but that's because my husband Jim and I have put 100%+ of our energy, thinking power, financial resources, and I don't know what else into him. Charlie's 12 and looks older than he is because of his height and build. But his needs are not those of a "typical" 12-year-old: He needs someone with him all the time; at school, he needs one-to-one teaching. He's able to do more and more, understands more and more, but will need support and care from us and others throughout his life.
That's taking the big picture. One other thing about life with Charlie is that we sweat the small stuff more than we might.
Jeremy Fraser's Unnecessary Death
Published July 07, 2009 @ 12:34AM PT
I'm still trying to get my mind around the reports about Kristen LaBrie, the Massachusetts mother who is accused of withholding cancer treatment from her autistic son, Jeremy Fraser. Jeremy died in March of this year at the age of nine.
Yesterday LaBrie pleaded "not guilty" to a charge of attempted murder; she had earlier been charged with child endangerment. The July 6th Associated Press vis WBUR reports that Jeremy was diagnosed with a "severe form of autism" while young. He was diagnosed with non-Hodgkin’s lymphoma in October of 2006 and given an 85 percent to 90 percent chance of recovery. He received "large doses of chemotherapy" and his cancer went into remission. LeBrie was given prescriptions for medications for Jeremy to take at home and this is when the story turns more than puzzling. According to Assistant District Attorney Kate MacDougall,
LaBrie repeatedly failed to pick up prescriptions, but led doctors to believe they were being filled, at one point asking for a liquid version of the medication because her son was having trouble swallowing pills.
“Miss LaBrie never expressed any misgivings about the treatment,” MacDougall said.
In February 2008, after one of Jeremy’s doctors called LaBrie’s pharmacy and learned she had not been filling prescriptions, LaBrie said the pharmacy must have made a mistake, MacDougall said.
It was at that point that doctors discovered that the boy’s cancer had returned as leukemia and was untreatable with chemotherapy, she said.
The details only occlude the situation: LaBrie was divorced from Jeremy's father, Eric Fraser, and they shared custody until a year ago, when full custody and parental rights were signed over to Fraser. In court documents filed in April of 2007, LaBrie claimed that "Fraser chronically missed visits with his son and did not have contact with his school or doctors during the boy’s chemotherapy"; the withholding of medications for treatment occurred while Jeremy was in LaBrie's care. As reported in the July 4, 2008, Boston Herald, since 2000 both LaBrie and Fraser had been "the subject of nine complaints of abuse and neglect, called 51As, although seven of those were unsubstantiated or screened out, according to DSS records. A 51A complaint triggers a DSS probe."
In reading about this very sad case, I've mostly been thinking about what must life have been like for Jeremy, to have his cancer go untreated? What must he have suffered?
There's a lot of difficult and sad news that one reads about autism but this one is particularly disturbing. There's plenty of disagreement among parents and within the autism community about what to do for autistic children, but there's certainly the acknowledgement that things need to be done, and a deep sense of responsibility to do what's right.
It's not going to be easy to read further reports about Jeremy Fraser.
Autism Therapy Fatigue
Published June 29, 2009 @ 02:57PM PT
The relative of an autistic girl asks if there's such a thing as "therapy fatigue" in a letter published in the Manila Bulletin Publishing Corporation:
.....I noticed that the child is always tired of attending one therapy after another. She becomes cranky and would be moody at the end of the day. Sometimes, she even refuses to go out as if she doesn’t want any therapies anymore. Is there such thing as “therapy fatigue”? If yes, should I tell her parents to stop or lessen giving the child therapy session? If none, can you tell me until when should a child with autism continue to attend therapies?
Responds Dr. Myra V. Altonaga, a neurodevelopmental pediatrician based in Cebu:
...herapy fatigue often occurs in children who are subjected to daily therapies (not just one therapy). In other words, their daily routine would include going from one therapy to another.
In my clinical practice, I’ve encountered parents who would not be contented with the therapy in the center alone but would also get home service therapy within the day either just to fill up the schedule of their children, or to maximize the intervention.But we have to remember that they are also children who want to play and do things that they enjoy. We have to give them enough time for these also.
Lessening the therapy sessions would be helpful. Anyway, the big factor for the success in the intervention would be the follow through and the active participation of the family members and not the frequency of the therapy sessions.
It's not hard for a parent to go into autism-therapy-overdrive with so many therapies and treatments, educational, biomedical, medical, etc.. When my son was younger, we tried many things; sometimes it felt (felt) that there was an unconscious feeling among parents that "the more we're doing, the more it shows how hard we're trying. Gradually---after seeing what helped Charlie and what not---we let go of the alternative biomedical treatments and focused on his education. The only doctors we visit now are the pediatrician (inevitable colds and minor ailments), the neurologist, the dentist. (And I think we all felt a sense of relief at not driving him every which way to yet another therapy appointment.)
When do you know when enough is enough?
The Same Old Same Old
Published June 26, 2009 @ 12:36AM PT
Looks like Dora and I did it again, both posting about the same (Chicago Tribune) article yesterday. Dora's post focused on precisely the topic that drew me to the article, the notion of "insistence on sameness" and, in particular, on "insistence on sameness" as something as "maladaptive" and in needing of lessening or, even, outright eliminating. Repetitive behaviors can rather be seen as an individual's attempts to self-calm and adapt to a world that's not so readily going to adapt to her or him.
I'd been thinking a lot about sameness with the end of Charlie's regular school year. And, on Thursday and for half of Friday, Jim and I were encouraging Charlie to, indeed, not do "the same old same old" and veer from his routine. Yesterday, I spoke at the 15th Annual Pennsylvania Immunization Conference in Grantville, Pennsylvania, which is near Hershey (as in bar, as in chocolate), Pennsylvania. I spoke on "Autism and Vaccines: A Parent's Perspective"---on why we once (very irrationally) worried (but we did worry) that vaccines could have "contributed" to autism in Charlie; and about how, when he was 8 and everything was set for him to start in a new school district except that he was not up to date on his vaccines, we gave ourselves a good shake and got him up to date, and it was No Big Deal. I talked about the tremendous amount of energy and passion devoted to this issue and how this is, ultimately, a huge distraction from the real issues that real individuals and their families face, the need for education and schools, supports and services.
In other words, I talked about the same things I've been writing about while blogging at Autism Vox (to the point that I sometimes thought I should temporarily rename the blog Autism Vax). I won't be surprised to be referred to as a "paid Pharma shill" or some such and to be supplied (in the comments to this post and elsewhere) with numerous links to numerous articles, websites, studies studies studies pointing to a "link" between autism and vaccines (there is no link), informing me I'm wrong, and so forth.
But that's more of the same---what is it about certain autism topics that they become so perseverated upon?---and, rather than write a post like many I have already written before, here's something about the change in Jim's, Charlie's and my routine from going to Grantville, PA.
The conference was something over two hours away from where we live in New Jersey and I was scheduled to speak at 10.15am on Thusday morning, so we thought it best to leave on Wednesday evening. As of the past year, Charlie has been much more resistant to traveling beyond his usual circle of places, as we realized on our last trip to California, when Charlie made it clear, he wanted to be h-o-m-e and N-O-W. In the past year, he's been generally more insistent (and communicating this to us) about keeping some things----where we eat, what he eats, what order we do things in while at the pool---the same. The past year having been a time of perpetual transitions for Charlie, it makes sense to us that Charlie would be seeking to create some waystations---markers---to rely on in the midst of much turbulence both inside him (physically, certainly) and all around him.
On the other hand, there are times when he and we seem to be stuck in a box, so in need of maintaining the same old same old that it feels impossible to do anything else. What do you do if the one diner he has to eat at is closed for renovations?
