The Autism Golden Goose: Exploitation of Families Through Misinformation

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I've seen it in the news, I've seen it on the Internet:  Miracle cures for autism by magic stones, pumping vitamins in the body, using special, expensive "treatments" from European herbs.  Books abound with this information, and publishers snap it up.  Why?  Because families with autistic children are at a loss, and are willing to do anything to help their child.  Millions are taken from these families every year, and yet autism remains prevalent in our society.  The children are not cured, and many end up in worse condition because they have had toxic effects from these "treatments".  Still others are exposed to life-threatening illnesses because their parents have refused to vaccinate them in fear of autism.The problem is, you never hear about these families, those that have gone bankrupt because they followed the advice of a celebrity that never finished college because their doctor was unable to give them any definite answers. So who's fault is it?  Who is leading this major scam against families across the world?  Surely someone must take responsibility, but who?  Let me give you the anatomy of the scams that are out there. 
  1. Autism Is Still Not Defined:  Sure, we know the behavior that is associated with the spectrum, but we don't really know what it is.  There are several genetic disorders that can cause autistic behavior, from food allergies to enlarged brains.  Autism is not a biological diagnosis, it's a psychological diagnosis.  Because of this, no one really knows what causes it, just that it exists.  There have been recent advancements in identifying 6 genes that have a direct link between the size and function in the brain and autism, with another 4 that are being researched.  But until the research is complete, parents will not know what biological disorder their autistic child will have, and therefore not know how best to address the disorder.  It all comes down to funding, research focus, and support from the community.  If your local University is involved in an autism study, do all you can to support that study.
  2.  Print Has Power:  By default, people like to believe what they read.  This extends to websites, newspapers, gossip magazines, and flyers on their windshields.  They believe the claim that one can lose 200 pounds in just 3 months if you eat nothing but grapefruit if it comes in a diet book.  As such, if there is a book out there that claims you can cure your autistic child by feeding them nothing but expensive food that is missing one amino acid, people are willing to believe it.  Here there are three culprits:  the writer, for writing such false information, the publisher for not verifying the material, and the reader by not looking for the clinical evidence that supports the claim.  Often times these writers will put an alphabet soup after their name, and as such feel they don't have to provide the clinical evidence to support their claims.  If ever you see a claim that is not supported by actual research, hang on to your wallet and run!
  3. Celebrities Are Treated Like Experts:  People believe celebrities because they play really smart people on stage or screen.  Unfortunately, these people are no better informed than the average person.  They are human, not perfect people as we would perhaps wish they would be.  But people will still repeat a claim by a celebrity as the final authority, even when doctors and specialists decry such theories. First and foremost, the responsibility lies in each of us.  We can't give credence to people who are not experts in the field, just because they were in our favorite movie at one point.  It flies in the face of common sense.  Unfortunately, common sense is not common, and people will believe the Jennifer McCarthy's out there who claim to have cured their autistic child through magic eastern medicine, even when they still have the same behavioral symptoms as before.  My advice to you is, check the clinical research first.  Get real, controlled study results and judge for yourself.  
  4. People Fear Most What They Do Not Understand:  This is huge.  Yes, the unknown, uncontrolled frightens us as people.  We are afraid, because we can't predict what will happen, when, how it happens, and what to do when it does.  Autism is no different, as we do not know exactly what causes all instances of autism, how it happens, and what to do about it.  Because we don't know what it does, we are afraid of it.  Parents would rather subject their children to polio, measles, small pox, rubella (which damages the blood-brain barrier, by the way), and a host of other illnesses that can be terminal, in an attempt to avoid the unknown of autism.  
All I can say to these parents is that I've been there.  When I found out that my son was autistic, I was numb.  I didn't know what to do, because I didn't know anything about it.   I started my research on the Internet, like most parents would, and not with Google Scholar either.  I read all the crack-pot theories, and went along with it because there were testimonials.  The difference is I didn't have the funds to be fleeced, so I didn't go for any of the really expensive garbage out there.  It took a long time to come around, but eventually I started looking at the research.  I had help, colleagues that were involved with neuropsychology, and access to research materials that helped me understand that autism was caused by real, physiological developments instead of garbage theories that were out there to make money by taking precious funds from families that could be investing in their child's development.  As one wise doctor told a friend of mine, Autism is a popular diagnosis right now, but no one knows what causes it and there is no cure. It's true, there is no cure for autism. There is no magic treatment that will cure your children. But you can help educate your child by helping them communicate, learn skills to help them be as independent as possible, and contribute to society as a whole in some way. Work with your State or National governments and have them focus on real, clinical studies to help identify autism early, and demand educational materials to be available for you to help your child.  Don't just rely on any schooling program, no matter how good they are.  Nothing can replace the support parents can give their children.  And to all those out there that would take advantage and fleece the Autism community, we are on to you, and I have one thing to say to you with all the anger, hatred, and feeling of injustice that I can muster: Shame on you.