I once had the privilege of attending a course where a panel of parents and family members of individuals with autism and other developmental disabilities spoke with us about their every day challenges and realities. I have worked in the field for over 8 years. I have built many wonderful relationships with the parents of my students and have always felt that I could connect with families, doing my best to understand what they were going through. But this panel showed me how little I truly did understand. While every family member opened my eyes in one way or another, one father's words really stuck with me. He said you need to get to a place where you understand and accept that things don't always have to be "OK"... We always think we have to fight and search and work towards fixing things, but there are some things we can't fix and we have to become OK with things not being OK. He was by no means giving up on his child. His point was that the constant searching, fighting, and waiting for things to "get better" was putting such a strain on the family and on their relationships with their son that at some point they had to stop focusing on trying to fix everything and start focusing on their family learning to be OK with things not being OK.
He was right. So was Jenny McCarthy... Every parent wants to fight for their child. Even your typically developing child who may be facing more run of the mill challenges, parents will do everything they can to help their children and solve all their problems for them. So for a child with a disability, one which will likely affect them throughout their lives, that desire to protect, to fix, to cure is surely unwavering. What is scary and unfortunate is how far this desire will take you. What are you willing to do? What are you willing to look past? And what are you willing to believe? These topics, not surprisingly, also came up at the panel. Parents spoke out on trying or wanting to try various unfounded treatments. When there are spokespeople out there claiming a cure but science tells you it is a long journey with projected improvements but no cure, what/who are you likely to believe?
Here's the thing: Scientific and medical research are fairly important (clearly an understatement). While their claims and treatment outcomes may not be as fast acting or as flashy as many "alternative treatments" out there claim to be, the results of scientific and medical research help to keep us safe, to weigh the costs and benefits of various treatments, and to prove or disprove the actual efficacy of any given treatment.
Here's the other thing: There are many very scary "alternative treatments" out there in the autism world. Their being called "alternative" doesn't mean that they are good alternatives, it means simply that they are the alternative to or opposite of research based treatments. So really, they are without evidence. They DON'T work or the results are infrequent, inconsistent, or otherwise unreliable... or they are simply too dangerous to try. Some of these treatments are not harmful: A gluten-casein free diet is not likely to cause any damage (though nutritional balance should still be maintained when foods any are eliminated). Other alternative methods include Chelation therapy, using hyperbaric oxygen chambers, and other unproven medical procedures could have very dangerous outcomes (even death) for your children. What isn't true about alternative treatments? That they never work for anyone. There are so many factors that could lead to results from alternative treatments.
- The treatment actually worked.
- The treatment in combination with other (research based) treatments produced the results.
- The other (research based) treatments produced the results and this alternative treatment had no impact.
- Something else entirely caused the change.
The problem? It is much easier to access and understand many of these unfounded claims. Listening to a celebrity on the news or a talk show speaking without using jargon or confusing numbers and explaining what they saw in their child is easier than a researcher showing graphs and giving numbers without anecdotes parents can easily relate to. Ever notice how much of a difference a doctor's bedside manner makes? Well that's pretty much the premise here too. Often researchers, even behavior analysts who work with you and your child on a regular basis are hard to relate to since they may only focus on science, numbers, data, and do not account for other information you may provide about your child. This should not be the case, but regardless, a well known public figure sharing personal and heartfelt stories you can relate to really goes a long way. This is where I fault Jenny McCarthy (along with many others). Making public claims about the efficacy of unproven treatments, providing anecdotes instead of evidence and discrediting science to an audience who is out there looking for answers, looking for ways to make everything OK is incredibly unethical and dangerous. Of course I acknowledge that in many cases people are not intending the harm they cause, but for the same reason it would be unethical for me (as a special education teacher with a background in Applied Behavior Analysis) to begin making public claims about better ways to fix congestive heart failure even if I saw it "work" for someone else (always remember the difference between correlation and causation, just because two things happened does not mean that one caused the other...)
One last thing: Basically all of this is very understandable. There is so much more research needed in the field. For all the research that has been done, there is still so little known. The biggest question? What causes autism? The answers to this question will undoubtedly lead to greater advancements in autism treatment. In the meantime, providing accessible, clear cut/understandable, and relatable information to families is truly essential. There are already some great resources out there including state by state organizations (e.g., Autism New Jersey), the Association for Science in Autism Treatment, the Organization for Autism Research, etc. which are both "parent and professional friendly." This article from the Association for Science in Autism Treatment, for example, http://www.asatonline.org/treatment/makingsense provides helpful information regarding evidence based vs discredited treatments and can help parents wade through all the conflicting information and sources out there.
Let's try to have a good outcome from all of this. Lesson learned? Trust science, not stories. If something without an evidence base works for your child? Fantastic. Be thankful and provide as much information about it as possible to a teacher, therapist, researcher, etc. and hope that it may lead to a breakthrough, but don't claim there has been one before the proof is there...
Kristine your amazing :) and well spoken by the way
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