The Chicago Tribune recently ran a lengthy article looking at some of the more controversial treatments being used for autism. If the link doesn't work, a search of the archives should help you find the article. Try "autism treatment" or something similar.
When I first saw the headline, I immediately scanned the article to see if my personal favorite - Facilitated Communication - was included. Because the story focused on questionable medical interventions, we were spared this time. But I know the feeling all too well. Being part of a major controversy keeps one on edge much of the time.
So, breathing a sigh of relief, I read on. And, as I have done so often in the past, I tried putting myself in the shoes of the parents. What if I had a child with autism? Where would I turn? What might I consider in the way of treatment or intervention? How does one begin to make such decisions, especially when the medical field seems to know so little about the condition?
I have seen many families whose lives are completely disrupted when they receive the autism diagnosis. Understandably so - it is NOT an easy situation to deal with. I know of NO family with autism living what might even be loosely considered a "typical" life. Everything changes; and at least at the beginning, it seems as though everything revolves around the child with autism.
Most of the parents are quite well-educated; many have higher than average family income. All of us want to do whatever we can to help our children. If a child has a diagnosed medical condition, we want to get him/her the best possible medical attention. But autism is so complex, even mysterious, some sort of mixture of medical and psychiatric disorder, very poorly understood. Where does one turn?
I wouldn't dream of passing judgment on parents who search tirelessly for answers. I have the highest regard for family physicians who take a sincere interest in the child and are willing to help the family in their search. But I do get scared by what I see all too often as the first suggestion for treatment: psychiatric drugs. Surely there must be something better than putting a young child on medications that are designed for adults with schizophrenia or other serious psychiatric conditions.
We talk about the autism "spectrum," suggesting there is a wide variation among those who are given the diagnosis. Knowing as little as we do about the causes of autism, it seems to me that there will be a wide array of interventions or treatments that might be helpful.
So, what would I do? Lots and lots of research. Find a support group. Establish a trusted respite care provider. Take care of self and family. Maybe try some basic dietary changes (the gluten-free, casein-free diet has helped many). Look for early intervention programs that stress development of language, play and social skills. Find a medical doctor (or larger research center) to help with more specific evaluation of underlying medical conditions. And above all, presume competence. Love that child and assume they are capable of learning, thinking, feeling; read to them, talk to them, take them places, expose them to the world - even if they seem to be paying no attention at all, even if they seem to prefer to be left alone in their own world.
What would I avoid? Spending tons of money. Anything that seems just a little too invasive or experimental. Anything that causes major disruptions in the family structure or routine. Trying to find a "cure." Psychiatric medications. (These might be needed later on - I don't like the idea of using them before other interventions have been tried).
Many of the adults with autism who have written books or are able to give presentations at conferences talk about the confusion they felt when they were younger. Parents who thought they were showing their love and concern by running from doctor to doctor seeking answers inadvertently sent a message to the child that there was something terribly "wrong" with them. The child often knows they are causing their family trouble, and easily picks up on the idea that they are defective. They want to be loved and accepted for who they are - don't we all? So, the search for answers and interventions must be delicately balanced. The message to be conveyed is that we love you just as you are, and we will never, ever give up on our efforts to make your life as comfortable and "livable" as possible. We are NOT trying to fix you, but we WILL try to make your environment as accommodating as we possibly can. We WILL try to educate ourselves and everyone else in your life so that we can all live more comfortably with you and your autism.
It is not easy. The good news is that there are more and more success stories out there. There is hope for a better future.