Complementary and alternative medicine use in a large pediatric autism sample

9 Nov

The journal Pediatrics has a large number of autism related articles in a recent supplement. One of these covers a topic discussed a great deal by parent groups online: alternative medical approaches to the treatment of autism. In Complementary and alternative medicine use in a large pediatric autism sample, James Perrin (this one of his five articles in the Supplement; Dr. Perrin is the president elect of the American Academy of Pediatrics) and his coauthors use the Autism Treatment Network (ATN) to review parent report of use of complementary and alternative medicine (CAM) in regards to autism.

The authors find that while CAM is used by a significant minority of parents, it is a minority: 28% (896 out of 3173). Special diets are the most common (548 respondents, 17%). Various methodologies are listed below:

Characteristic N
Any CAM 896
Special diets 548
Gluten-free diet 249
Casein-free diet 289
No processed sugars 69
No sugars or salicylates 28
Feingold diet 14
Other specified special diet 293
Other CAM 643
Other vitamin supplements 413
Probiotics 274
Essential fatty acids 171
Digestive enzymes 116
Higher dosing vitamin B6 and magnesium 99
Chiropractic 77
Amino acids 59
Antifungals 58
Glutathione 33
Chelation 19
Hyperbaric oxygen 12
Acupuncture 10
Sulfation 7
Other specified CAM 173

Some of the most talked about methodologies are rarely used. Chelation, for example, had only 19 respondents or 0.6%. Hyperbaric oxygen, 0.4%. Previously, chelation had been reported as being used by about 7% of families. If these studies are comparable, this would indicate that chelation has dropped from low to very low in use by parents.

CAM usage is higher among the wealthy, whites, those with children with autism vs PDD NOS or Asperger syndrome, and higher among those whose children have gastrointestinal complaints and/or seizures. The authors note:

As with other CAM use, it will help to determine more about the potential synergistic effects of CAM with medical treatments as well as ways that CAM use may interfere with improvement in medical conditions.

The full article is available free online including a discussion of limitations of the study. The abstract is copied below:

BACKGROUND AND OBJECTIVE Children and adolescents with autism spectrum disorder (ASD) often use complementary and alternative medicine (CAM), usually along with other medical care. This study aimed to determine associations of ASD diagnostic category, co-existing conditions, and use of medications with use of CAM.

METHODS We used the Autism Speaks Autism Treatment Network patient registry, which collects information on CAM use, medical conditions, and psychotropic medication at enrollment. CAM was categorized as special diets versus “other” CAM; ASD was defined as autism, pervasive developmental disorder (PDD), or Asperger’s. Gastrointestinal symptoms, seizure disorders, sleep problems, and medication use were determined from parent report. Child Behavior Checklist (CBCL) scores were used to measure behavioral symptoms. Logistic regression was used to determine associations of diagnostic category, other medical conditions, and medication use with CAM treatments, controlling for demographic characteristics.

RESULTS Of 3413 subjects in the registry as of April 2011, 3173 had complete data on CAM use: 896 (28%) reported any use; 548 (17%), special diets; and 643 (20%), other CAM. Higher rates of CAM use were associated with gastrointestinal symptoms (odds ratio [OR] = 1.88), seizures (OR = 1.58), and CBCL total score >70 (OR = 1.29). Children with PDD (OR = 0.62), Asperger’s (OR = 0.66), or using medications (0.69) had lower rates.

CONCLUSIONS Children with ASD use more CAM when they have co-existing gastrointestinal symptoms, seizure disorders, and behavior problems. This study suggests the importance of asking about CAM use in children with ASD, especially those with complex symptoms.

10 Responses to “Complementary and alternative medicine use in a large pediatric autism sample”

  1. Science Mom November 10, 2012 at 22:52 #

    Interesting to see this information collated and reported. However, given that the use of CAM was parent-reported, there is a lot of potential reporting bias. Parents who are embarrassed or feel as though their “treatments” are socially-unacceptable and perceived as abusive would doubtfully accurately list all of the “CAM” treatments they have subjected their children to.

    • futuredave5 November 11, 2012 at 02:18 #

      This makes sense. At least parents have the good sense to be ashamed of bad treatments.

      I am at the NAA conference this weekend, and have spoken to a few of the parents here. I haven’t met any that admitted to using HBO, for example. (Although someone must be, since they appeared to be selling HBO units in the exhibit hall.)

      My non-random sample came up with ten (100%) kids using or tried some form of ABA, and about six of those on some kind of diet.

      One admitted to chelation, two admitted to acupuncture, and one admitted to homeopathic. Everyone had at least tried various supplements, enzymes, probiotics, or whatever.

      I didn’t meet anyone who admitted to off-label use of medicines, or even HBOT, but then it was hardly an anonymous setting.

  2. Samuel November 13, 2012 at 07:11 #

    What an amazing study. I love seeing the numbers like this to show people cold, hard facts. I’m glad the parents were willing to allow their children to participate.

  3. futuredave5 November 13, 2012 at 11:21 #

    I would like to see this particular study carried to its conclusion, though. How many parents feel that the “alternative” treatments are helping? And, if possible, how much of the parents opinion can be verified?

    We have our son on a gluten-free diet, for example. We decided to give it a try, and to keep a log to determine if it is helping. In the past year, he has gotten gluten exactly four times, and we have been asked to remove him from his karate class for disorderly behavior exactly four times. Each time, on the day following the gluten.

    To do a scientific study, we would need to do the same observation with a few dozen similar kids; but we only have one available. Based on our observation, we have decided to keep him on a gluten free diet.

    Two of our friends tried the same diet, and noticed no difference at all. Does this mean that we are mistaken, or does it mean that different children might respond differently to the same treatment?

    • Lara Lohne November 13, 2012 at 17:46 #

      futuredave5, personally what I think it means, and what the general consensus seems to be among autistics and professionals alike, if the person has an allergy or sensitivity to a particular food, then ingesting that food may cause bowel irritation and pain and that pain may result in sensory overload in that individual. When the source of the irritation is removed and the pain relieved the behavior does improve, but the autism does not change. It is no different from a child with a sound sensitivity being exposed to loud noise levels or even a particular sound/pitch that may cause pain to them and exaggerate autistic/stimming behavior. Take away the source of sensory overload and the stimming goes away or is at least lessened. Since not all autistic people have gluten or casein sensitivities, or even bowel issues at all, GFCF diet would not do anything for these individuals. And also best to keep in mind autism is delay, not stasis, therefore a child who is only mild to moderately affected by autism will make progress just as a normal part of the aging process. Your son stands on one side of the diet question, my son stands on the other. He hasn’t ever had bowel issues, and a diet that eliminated things he wasn’t showing any sensitivity to didn’t make sense. He has made progress though, but it’s not because of any special diet, and he’s not received a whole lot of intervention on the other end either, so the majority of progress he has made has been on his own, naturally. While I’m sure there are many more references to be found, my time is limited right now to be able to find them all, but I did find this: I’ve not yet searched for the actual study this article is speaking about.

    • Roger Kulp November 14, 2012 at 03:06 #

      futuredave5,It means there are many different conditions that present as “autism”.Does your son react to dairy,or more specifically cow’s milk?I am diagnosed both,on the spectrum,and with what is called refractory celiac,that is celiac that does not respond to diet.I have had serious malnutrition my whole life.As a child I was diagnosed as having failure to thrive.Gluten causes me to just have very severe GI problems,but cow’s milk,has always caused me not only GI problems,but all sorts of brain/behavior and autism related problems.Head banging after eating dairy is a good example.Other people have problems with soy.

      I kind of doubt your son has the serious folate metabolism problems (CFD folate receptor autoimmunity,and other folate problems.)I do,but,in people like me,cow’s milk has been documented to cause serious brain/behavior problems that make autism much worse.

      This can all be proven with genetic and metabolic tests.I have had them all,and tested positive.


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