Families that have a member with a disability are looking for answers. They want to know what they can do to help this person they love. Most of them want to do this as naturally as possible without using a host of possible chemicals. It seems logical that if something went wrong with natural processes of conception or gestation to create this disability then something natural should be able to cure the problem or at least make it better, so they look at the possibility of supplements.
There is a wealth of information available through many sources. Some of those sources are anecdotal and some are peer reviewed. Anecdotal sources are those sources where results have been reported by the person taking the supplement or by the family members of the person taking the supplement. Peer-reviewed sources are those sources where researchers have followed scientific method, they’ve obtain approval to pursue this research by a board or committee that insures that the rights of those being researched have been protected, they’ve done research in a methodical way, they’ve written their results then submitted the article to be reviewed by their peers. This insures that any research from these sources has followed guidelines and generally, that nobody should be hurt from following the recommendations they make.
Families and individuals with disabilities have felt forsaken by the researchers. The research takes years that they frankly don’t have to give suggestions they needed years ago. For the researchers much of the underlying problem is money or lack of money. If the research will only benefit a few people then it’s extremely hard to get funds to undergo the research. In addition, research on many of the supplements will probably never be funded because there is no money to be made on the hind end of the study. Supplements like B6 or magnesium are available over the counter for a fairly cheap price. It’s problematic to convince someone to fund research if they will have no return after the study.
Families, who are affected by disabilities such as autism, started years ago, passing on information about supplements they had used then subsequently saw an improvement in their affected child. Other families were grateful. There was at least something they could try that wouldn’t break the bank. Scientists were skeptical. There are many problems with this approach from the scientific perspective. How did you measure improvement? What about the placebo effect? Could some of these supplements be harmful?
I once had the pleasure of talking directly to Bernard Rimland from the Autism Research Institute on the phone. He gave me some of the best advice I’ve ever received in that short 10 minute phone conversation. He encouraged me to make sure my children, who have autism, were really getting a benefit from the supplements I was using with them. His suggestion was simple. He said, “Tell nobody who doesn’t have to know.” This levels the playing field, so to speak. If the people around your child/person with disabilities are biased towards believing wholeheartedly the answer to all their problems is giving them a supplement, they will believe they see positive effects once they find out your child is on a supplement. If the person working with your child/person with disabilities believes that supplements are a waste of money then they not only are not going to see any progress they are going to see regression. If nobody knows, the parent is given the opportunity to come in later and ask open ended questions. For instance you’ve given your child a supplement that others have reported improve language then the parent can ask, “how do you think his language is lately?” This gives the person you’re asking the opportunity to give a more honest response.
As a parent, I used that method of determining how any alternative treatments I was using were affecting my boys. I found it interesting that anything that had the desired effects for one boy did not have the same effects for the other. You could literally draw a line down a piece of paper, write their names individually at the top then list the treatments with a benefit under each name. There was only one treatment that could be listed under both of their names.
I have many concerns about the many supplements that are being offered for individuals with disabilities. I’m concerned about the costs to the family and the possibility of toxicity. Some recommendations far exceed the tolerable upper limits set for those nutrients. Some nutrients don’t have a tolerable upper limit set, but that’s no guarantee. That may just mean that nobody has reached that upper limit or if they have then nobody realized the problem was caused by taking excessive amounts of a nutrient. The costs to the family can be financial. Some of the supplements are encouraging an intake that costs in excess of $200 per month. Usually, those companies encourage families to put everyone in the family on those supplement. Some of these companies are using very high pressure sales tactics. I’ve personally had people tell me, “If you aren’t doing “this” for your child then you aren’t doing everything humanly possible”. Of course, the underlying message is “bad parent, you aren’t doing enough for your child”. In addition, some of these companies have engaged in acquiring sponsors to pay for others supplements. This concerns me not only for the family that is going to use the supplement, but for the sponsor family as most of the sponsors I’ve been aware of are families that have recently had a tragic loss. I fear the supplement companies are taking advantage of the sponsor families and their current state of grief.
The costs to the family that concerns me the most is the social capital loss. Social capital is how connected you are to your family, friends, and community. It is your emotional safety net. Those around you get tired of the many treatments and gradually that may be their reason for disappearing from your life especially if the family has been recruited as a salesperson for the supplement company.
My advice to those who are considering using a supplement is to take Dr Rimland’s advice. If you are going to try a supplement, tell only those who need to know and then ask open-ended non-leading questions. If someone is giving you high pressure to buy a supplement then tell them you don’t feel you can make an informed choice under that kind of pressure. Watch closely for any signs of toxicity. Re-evaluate on a regular basis if this treatment is beneficial. Know the signs of toxicity for the nutrients you are taking. Finally, as you give yourself permission to start these supplements determine under what conditions you would be willing to stop.
Regularly, make an appointment with someone you trust. This can be a one of the professionals you deal or a friend. List to them all the pros and cons of your current treatment then ask them to honestly tell you what they hear you saying. Do they hear you saying you’re having some doubts? Do they hear you saying this has been a great benefit? Do they hear you saying this is having too much of a strain? Or do they hear you saying this is helping you get through the day?
Families have the right to try supplements or any treatment they feel will be beneficial. Many families have seen some good improvements using these supplements, including mine. However, they also have the right to all the information. Just because something is natural does not make it harmless. Proceed cautiously; keep an open mind to the possible benefits and pitfalls.
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