Were it not for a lack of knowledge or, frankly, interest on the part of most of the medical community, parents of children with autism would be happy to relinquish their quest for appropriate treatment.
Too often, I listen to stories about pediatricians who have declared, “Well, I don’t know much about that ‘spectrum’ diagnosis. Let’s wait 3 to 6 months and see what develops.” Or neurologists who, after observing a patient for less than 5 minutes arrive at what they think is an accurate diagnosis, followed by little in the way of explanation, and even less effort to provide relief, other that a ticket to, “find a good therapist.” Then, there is the peanut gallery of mildly interested observers who implicate over-diagnosis and link the epidemic to anti-vaccination conspiracies.
That being said, the families who are left to fend for themselves in this void must navigate a sea of dangerous waters in order to find safe, reliable and effective protocols for children affected with ASD. These are some of the issues that frequently arise for those warrior-parents.
No matter how ‘benign’ the intervention, what works for one child might actually make another child worse. There are many different kinds of autism, including boys (aggressive) vs. girls, early vs. late (language regression), immune (rashes, constantly sick and antibiotics), gastrointestinal (reflux, bowel problems), and genetic variations. Furthermore, at any one point in time, speech apraxia, social isolation, sensory issues, or aggression might define a child’s autism. So, Dr. Google’s therapy du jour may not even apply to the present status of your offspring.
Will Junior actually take a supplement that was suggested on the Internet? Compliance issues are a major challenge among our patients at The Child Development Center. Children are usually very picky eaters, sometimes refusing to chew, or preferring to smell everything, and not likely to ingest another yucky concoction. The ‘best’ fish oil won’t work if your child won’t take it, so a better tasting, less expensive, well-tolerated version may be the better choice.
Costs can spiral out of control. Each affected child may take between 5 to 10 supplements/medications per day, often exceeding $300 per month. And, of course, it is not covered by health insurance. Can you really afford to give another remedy on the advice of a friend-of-a-friend-of-a-person-whose-kid-has-autism?
Complicated, expensive therapies are compelling. Parents who seek experimental, untested, and/or potentially dangerous regimens are not foolish or ignorant, they are frustrated and desperate. For the most part, unless your family has unlimited resources, your money is better spent on proven, conventional behavioral interventions.
Parents may not be aware whether item #2 on the list of supplements is actually amplifying item # 7, or nullifying. For example, notwithstanding manufacturers’ claims, digestive enzymes digest stuff. Probiotics, proteins, etc. work best when they reach their intended destination in the natural state, so some products must be given individually.
Home therapies do not take the place of a thorough medical workup by an experienced practitioner who demonstrates reproducible results. Vitamin D, e.g., is great, but high doses could be harmful. The child’s blood count, liver, kidneys, thyroid, and other metabolic functioning should be documented and followed when a fragile toddler is the recipient of pharmaceuticals of any kind, with potentially serious effects.
Rather than eschewing novel treatments, I am eager to become educated about patients’ reactions – positive and negative – so that my advice applies to each individual child, at a particular point in their recovery, targeted at the therapies that will take the patient to the next level toward independent function.
I have learned useful techniques from naturopathic, holistic, Ayurvedic, and just plain Mom-medicine. Epsom salt baths, attention to nutrition, probiotics, essential oils, and the like, can be quite helpful. However if you are experiencing a 2 year-old who is not making eye contact, a 3 year-old who doesn’t speak, or a 4 year-old who is banging her head, sooner or later you will get the most tangible results from a practitioner who can accurately identify, and treat, such serious challenges.
About regimens and treatments that some might say, “How can it hurt?” the most important lost resource may be time.