Because many parents of children with ASDs want the best for their children, and because there is so much controversy and in-fighting around what autism is (very common, when old models are no longer able to explain – or dismiss – the accumulation of new observations), this is a situation that is ripe for exploitation. And sure enough, there are people who are making a bundle of cash from autism parents’ hopes for their children.
In all justice, many of these professionals who are charging a lot for experimental protocols have high expenses. Not only do they have to invest in special equipment, but they have to keep a clinic, staff, and outreach going, in addition to paying for their own time, any necessary insurance, and an up-to-date dispensary. And some protocols, like the ones that the Autism Research Institute carries through, require lots of expensive metabolic tests, and lots of expensive time from multiple capable, educated, and insightful people.
The challenge is, how do we determine what is worth trying, and what is unethical? Is it unethical to do the GAPS diet because during the first 1-3 weeks, those of us with gut dysbiosis are likely to have an unpleasant and derailing Herxheimer reaction from the die-off of undesirable gut bugs? Is it unethical to take children or adults who are addicted to certain toxins like dryer sheets, or to opiates from casein and gluten, and remove those addictive substances from their environments?
After all, diet change and detoxing might not be what that individual wants at all… though he or she may like the resulting jump in comfort and function very well – as I did. Is what the individual wants more important than their health and quality of life? Should this change at a specific age? It’s a difficult question that I try to address by recommending that dependent autistics be involved in any decision-making, even if it amounts to a thumbs up to continue, or thumbs-down not to.
I struggle more with whether things like Hyperbaric Chambers are ethical, because whether and how much they help is so dependent on your overall autistic symptom picture, and in many cases this is not very clearly explained. In addition, there are much less expensive ways to oxygenate the tissues that have been black-balled because they aren’t patentable (read Altman’s “Oxygen Healing Therapies” for more information).
It also seems as though, for many protocols, the first response of many practitioners who are not getting the desired results is, “If you were doing it right, your autistic dependent would be getting better”, thereby putting the victims at fault. This is HIGHLY unethical. Much better is the question, “Hmm, I wonder if we’re missing something important, here?” This draws everyone into the problem-solving process, and takes the professional off the “authority who must be unquestioningly obeyed, to the letter” pedestal.
Many people ignore the reams of medical research showing the benefits of treatments such as homeopathy (e.g. Dr. Nancy Malek’s site: http://drnancymalik.wordpress.com/2014/04/04/download/) and instead engage in uninformed and inflammatory diatribes like the one created by my national news (dis)service, at: http://www.cbc.ca/news/health/homeopathic-nosodes-should-not-be-on-the-shelf-1.2075046
The thing is, when you’re part of the 40% of the population for whom prescription and other drugs do NOT work well, for self-care you’re left with things that most MDs scoff at, such as herbal medicines, nutrition, a variety of different hands-on therapies, trauma release techniques, and techniques that work with the very tiny electromagnetic signals the body controls itself with, such as homeopathics. And this is not a comprehensive list of effective interventions, by any means.
So we’re back to caveat emptor, do your research, and the precautionary principle. If it’s a technique that has the potential for harm (and most healing techniques and supports do), walking in with your eyes open is the only way to go. Learn everything you can from experienced people who have tried that intervention, both successfully and unsuccessfully, like other parents, and autistics who are able to communicate.
Research everything about a particular treatment before making a decision, especially about how long to do a trial for. Many people go off the SCD or GAPS diet before they’ve been on it long enough, because of the worsening of symptoms as the body clears out old junk. And there are some parents, such as Judith Chinitz in “We Band of Mothers” who go for 6 or more months before they begin to see real improvements in health and function from this diet.
Now what about the question, is a specific protocol or intervention worth trying?
There are lots of interventions that help some of us and not others, that help a little and stick (the results last), or help a little and don’t stick, or that seem so controversial it’s hard to imagine why someone would choose to even think about them (like fecal transplants). Is it worth it, once you’ve gone through your own safety and cost-to-potential-benefit analysis, and selected what you believe your best options are – is it worth it to keep going if the going gets rough?
A general rule of thumb I’ve gone by is to track ALL the symptoms. If some improve while others stay the same or get worse, I go looking for the science which might explain this reaction… which is often unique for each autistic. Any symptoms getting worse are a warning flag for me, but if the worsening has an explanation and is temporary, I’m usually up for waiting to see if more of the benefits I’m also seeing start to increasingly kick in.
I’m not anti-intervention, nor anti-treatment, despite the abysmal (and in some cases, ongoing, such as electro-shocks used as aversives) history of treatment that has been inflicted on we autistics. The main thing is, any treatment or intervention I try has to give me some hope, right away. I have to see at least one or two symptoms that are improving enough to make bearing with the temporary worsening of others acceptable.
And I don’t see any point at all in doing expensive, intensive therapies if you aren’t at least trying to modify your lifestyle in the low-cost ways we KNOW promote health, for all humans: Love, Food, and Detoxing. If these haven’t been attempted to the degree possible in your current lifestyle, you’re unnecessarily compounding the difficulty and expense of the health and quality-of-life gains that you desire.