CLINICAL RESEARCH POSTER PRESENTATION ABSTRACTS
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FRIDAY, 5:45-6:30 PM

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Markell M, Bregman J, Lesser M, Lukin M, Spritzer L, Blank L, Rosof B.

Use of Complementary and Alternative Medicine (CAM) by families of children with Autistic Spectrum Disorder (ASD): frequency, source of information, reasons for use & for discontinuation of therapy.

Office of CAM, North Shore-Long Island Jewish Health System mmarkell@downstate.edu

Families of children with ASD reportedly use CAM therapies frequently, however the reasons for using, source of information and reasons for termination of therapy have not been studied. We interviewed 20 consecutive families who presented with children for intake at the Fay J Lindner Center for Autism in Bethpage NY using a questionnaire that was designed to address these issues. The average age of the children was 12.6+7.6 yrs and 85% were male. The most common diagnosis was autistic disorder (40%), followed by pervasive developmental disorder (25%), Asperger's (20%) and ADHD (10%). The majority of patients were Caucasian (80%), with the rest Black (5%), Asian (10%) and others (5%). Families were well-educated (75% had 4 years of college or graduate school), and the majority (65%) reported an income >$75,000 per year. 75%(15) of families reported using one or more CAM modality. Modalities that were studied included allergy shots, anti-yeast treatments, auditory integration training (AIT), chelation therapy, chiropractic, cranio-sacral therapy, DAN (Defeat Autism Now protocol), gastrointestinal interventions (including colonoscopy), special diets (including gluten or casein free), herbs or botanicals, homeopathy, intravenous infusions (including secretin), oral immune strengthening protocols, sensory integration training (SIT), and dietary supplements or minerals. Of families who reported using CAM therapies, the most common were chiropractic (7/15, 47%), sensory integration training (8/15, 53%), supplements/vitamins/minerals (8/15, 53%) and special diets (7/15, 47%). At least one family reported using each of the other modalities. Total number of therapies used per family ranged from 1 to 12 (mean 3.9), with the majority of families (10/15, 67%) using more than one. Most common sources of information were health care providers other than the primary physician (chiropractor, allergist, other MD—31%), book or magazine (16%), other (school, research protocol) (13%), friend or relative (11%), primary physician (11%), Internet (9%) and support group (7%). The most common reason for trying CAM was frustration that "conventional" therapies weren't working (32%), followed by recommendation by an MD (not necessarily the primary physician) (30%), and that "research looked convincing" (18%) or other people's experience was convincing (11%). The most common reason for discontinuation was "therapy didn't work" (75%), followed by "too expensive" (19%). Other reasons were inconvenience of therapy including distance to the therapist and difficulties with dietary restrictions.

We conclude, in our population:

1. CAM use is common, and many families use more than one type;
2. Chiropractic, SIT and dietary supplements were the most commonly used;
3. Source of information was most commonly a health care provider other than the primary MD, or a book or magazine;
4. Most common reason for use was frustration that other therapies weren't working;
5. Families were willing to recognize when CAM therapies didn't work & stopped treatment on that basis.

 

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