I had a question in the inbox about alternative treatments in autism. So today’s series, I’m going to deep dive into the industry of Autism treatments and programmes: What works? What doesn’t? What is potentially harmful? Let’s talk guidelines to help you choose when you want to do everything possible to help your child, and keep him/her safe.
27 – 88 % of families have used alternative or complementary treatments (CAM) for children with autism. This potentially lucrative market has unfortunately left families and children vulneralble to exploitation and potential harm by unethical or incompetent companies.
Doctors completely understand and support families to use complementary treatments. We know that this is a valid choice. Is the family frustrated with lack of effective conventional treatment? Does the family want to add in CAM in addition to conventional treatments just so they are doing everything possible to help their child ? Is the family concerned about safety or side effects of conventional allopathic therapies such as prescribed medications?
CAM for autism should follow same guidelines that I always recommend for CAM in any child:
1. It is safe and has no potential to harm child/family.
2. It potentially can have an effect.
3. It is not exploiting the patient or family in any way,
including misleading or financial costs.
4. It is discussed with your child’s doctors so that it can be
integrated into the overall care plan.
What are 7 Red Flags to avoid? Let’s give you some Red Flag guidelines for CAM autism treatments (also apply to most other CAM treatments out there for other conditions, too):
1. “Cure”: Let’s start at the very top by setting realistic expectations: There is no cure for autism, unforunately. And not that scientists aren’t working on it. However, to date, any product or treatment claiming to “cure” autism does not work, and no reputable therapist, researcher, or doctor would use that word. If you see “cure” claimed on the book or package wording, that should be your redflag to choose something else for your child’s CAM therapy.
2. Avoid any “chelation” treatment or therapy. There are potentially serious harmful or life-threatening to your child. They do not work, and there have been tragic cases. If the word “chelation” is in there, avoid.
3. Hyperbaric oxygen therapy: Does not work, is financially expensive, and has potential to harm.
4. Be suspicious of products that claim to treat a wide range of diseases, not just autism.
5. Any product/book that uses personal testimonials as a substitute for scientific evidence. If I gave you enough money for a quote and a headshot, what would you endorse?
6. It’s not just autism: There are very few diseases that conditions can be treated quickly, so be suspicious of any therapy claimed as a “quick fix.”
7. “Miracle cures,” which claim “scientific breakthroughs” or contain secret ingredients.
Are there CAM therapies that work or are recommended by experts?
What can be recommended as safe and has, in recognised studies, been shown to be at least partly effective?
A healthy lifestyle is recommended for all children, but should be particularly encouraged for children with autism. By healthy, we mean that mind-body-social connection health that docs call “biopsychosocial” model of health.
This includes a healthy diet with adequate intake of all essential nutrients, regular physical exercise, adequate sleep for their age, management of stress, and good social support. Studies have shown that when these balances can be struck, there is a definite improvement in behaviour. No easy task, though, for anyone or any parent for any child!
Vitamin D supplementation to meet daily requirements may be necessary in children with inadequate intake of vitamin D, which is common in Ireland. The evidence isn’t as strong for it, but it can be safely recommended.
What is safe, and might be effective?
Music therapy, as part of a broader programme: The studies are mixed but on the whole, most studies found that even when results weren’t measurable on a scale, parents reported benefits.
Melatonin for the sleep disturbances. Improved sleep will improve other things; there is nothing else magic about the melatonin. As any mammy (or on-call doctor) can tell you, enough sleep in itself can improve things. Use only with your doctor’s guidance.
Animal therapy and therapeutic horseback riding – yes, researchers study everything! Therapeutic horseback riding improved attention, distractibility, and social motivation in studies. (note: helmet and competent supervision recommended)
Sulphoraphane – It’s a compound in broccoli or brussel sprouts. Early studies using a supplement are mixed, (but doctors are fairly confident that recommending more broccoli can usually benefit your child in any case.😉 )
Usually safe choice to try but docs/researchers aren’t sure works at that well?
●Yoga
●Body work and energy therapies (qigong massage, therapeutic touch, healing touch, Reiki)
●Biofeedback/
●Hypnotherapy.
●Vitamin C – doses less than 2 g/day
●Vitamin B12
What other ASD treatments don’t seem work and may harm your child? (Or, think twice before setting up your GoFundMe page for any of these):
● Experts do not suggest a gluten-free casein-free (GFCF) diet for children with ASD unless there is evidence of celiac disease or true gluten sensitivity. Evidence that it works is very poor, and keeping to the diet is difficult. It has the potential to do real harm. There is a real risk of nutritional deficiencies, especially calcium, vitamin D, amino acids, unless monitored by an INDI/CORU registered dietician. No other “nutritionist” is qualified to recommend dietary changes in a child, for any condition. If you want to try it, protect your child and invest in/request referral to an INDI-CORU registered dietitian.
●Clinics abroad offering immunoglobulin therapies. It has failed trials and is extremely expensive. As potential risk of reaction to infusion or infection from infusion.
●Antimicrobial treatments: Not proven and risks include allergic reactions, low blood counts, skin rashes, liver injury and promoting antimicrobial resistance (the cause of “superbugs”)
●Vitamin B6 and magnesium- High doses don’t work, and high doses of B6 can actually damage a child’s nervous system.
● Vitamin A and D above recommended daily intake: They can be toxic to liver and calcium regulation at excessive levels, especially in children.
●Chelation and hyperbaric oxygen therapy – don’t work and potential for injury. (Both treatments are used routinely by medicine for legitimate indications, but no evidence they do any good in ASD and definitely have significant potential for harm)
● Any abroad clinic offering expensive vagal nerve stimulation or stem cell therapy. This does not work for ASD (the proposed science makes no sense at all here), and has significant risk attached to those procedures.
These below have all been looked at by paediatric experts, but don’t seem to help. They don’t seem to harm, though, either. The guideline here would be family budget. If you want to try it, probably can’t hurt but if you are stretching your budget to try to afford it, it more than likely is not worth it. But always, always, always discuss with your child’s doctor:
●”Oxidative therapies” other than vitamin C and vitamin B12 such as eg, methylcobalamin, folate, N-acetylcysteine
●Zinc.
●Herbal products (again, depends on what is in them; always discuss them with your doctor as herbal supplements can interact with your child’s prescription medication).
●Amino acids, which include dimethylglycine (DMG, a derivative of glycine) as well as others (eg, taurine, lysine, gamma-aminobutyric acid.
●Digestive enzymes.
●Mindfulness therapy has been studied in parents of children with ASD and in children with ASD.
●Acupuncture – Although generally considered to be safe BUT there is a risk of injury in uncooperative children. Do NOT force your child to cooperate with acupuncture.
●Craniosacral manipulation – Although systematic reviews suggest that craniosacral manipulation is low risk , experts advise that adverse effects may be underreported and is not recommended.
●Chiropractic treatment no proven benefit.
●Auditory integration training: Experts do not encourage using auditory integration training (AIT) for children with ASD. Although risk of harm is low, it doesn’t seem to work and it is very expensive.
●Omega-3 fatty acids: Multiple randomized trials have found that omega-3 fatty acid supplementation does not improve core symptoms of ASD or symptoms associated with ASD. Omega-3 supplements are not likely to be harmful, however, and are good for heart health!
●Probiotics: We have talked about this before for other conditions. Probiotics just can’t do almost any of the things that they claim to do.
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