It’s not just the Genes…

An important new study, “Genetic Heritability and Shared Environmental Factors among Twin Pairs with Autism” was released on July 4^th in the Archives of General Psychiatry.  It reports findings that support what SO many TACA parents have long suspected – almost “known” in our guts.  In a nutshell, the findings suggest that autism is triggered by environmental factors, not just genes.

Its bittersweet, this study.  On the one hand, a group of credible researchers (from Stanford and other highly respected universities no less) seem to have followed their scientific curiosity about the meteoric rise of autism, and maybe even listened to a parent or two.  Now these researchers admit parents might be on to something.  Something outside of genetics IS triggering autism, causing normally developing children to regress!  If identical twins share the same genes and have statistically significant different autism-related outcomes, something other than genes must have a role in ASD.

But on the other hand, thousands of TACA parents from across the country have been desperately trying to communicate this idea to countless doctors at endless appointments for over ten years.  “My child was fine and then something changed!!”  The majority of us got this response from our pediatrician:  “No (insert name here), autism is genetic.  Nothing changed in your child.  You just didn’t know what to look for.  You missed the signs.  Autism was there all the time.”

How much further along could we be in the search for treatments, for answers, for a better life for our children if our voices were heard 10 years ago?

I remember believing that parents and pediatricians were partners in a child’s care.  Like every other expectant parent in the last 20 years, I read all the pregnancy and parenting books.  ALL of them encouraged parents to be partners with their pediatricians.  I thought “of course I will work closely with my baby’s doctor!  I’ll have him/her over for dinner and we’ll be buds!”  As parents we rely heavily on pediatricians to assess, diagnose and treat a myriad of childhood issues so a good relationship is important, right?

Well partnering is a two-way street.  As part of this process, pediatricians NEED to partner with parents as well, and listen to concerns.  When parents say “something is different with my child” we need to be heard and not dismissed.

Autism is on the rise not just because of genetics but also because something in the environment over the past 20 years has changed. Autism went from an obscure and rare diagnosis to a prominent condition affecting every 1 in 91 or 1 in 110 children – depending upon which survey you refer to.

A quote from CBS News regarding the twin study released on July 4th:   “I was very surprised.   The environmental influence is stronger than I thought,” study author Dr. Joachim Hallmayer, an associate professor of psychiatry and behavioral science at Stanford University, told HealthDay.  “It doesn’t mean that genes don’t play a role, but they may not play as big a role as we thought.”

These findings are surprising if you never talk to or refuse to hear the parents of children with autism.  Trust me – NO ONE in the TACA office and none of my friends who are also raising children with autism found this surprising at all.

Recently at an autism conference I attended a lecture given by a physician currently treating children with autism.  He stated, “If an adult stopped talking or regressed in their skills, physicians would order a myriad of tests including an MRI.  When a child regresses or stops talking we just call it autism.”  We need to encourage our medical community to listen and be part of the solutions for our children.  Parent stories need to be an important part of the puzzle.

In the end, what this study really demonstrates is that we can accomplish so much more as partners who listen one to another – the parents and the professionals – than we can waging war.  Or worse – ignoring one another.

So here are a few practical ways you can help TACA encourage greater partnering in the autism journey:

1. Share this important study with your child’s professional team (including: physicians, neurologists, psychologists, therapists, etc).  Genetics should no longer be the sole focus on autism research.
2. Ask for more environmental research.  Share your story with legislators, with physicians, with community groups, with funders.  Tell your child’s story (if they regressed, when they regressed and the environmental issues your child was exposed to.) Your story is important and provides important clues.

One important place to share your story is with the National Institutes of Health (NIH).   Dr Thomas Insel at the NIH chairs the Interagency Autism Coordinating Committee (IACC).  With the Combating Autism Bill up for reauthorization, it is time for parents to share their concerns, give thanks to important (albeit late on the scene) studies like this one, and be a voice for additional autism research in the areas of our environment.  They cannot be fully effective without ALL of the necessary information or clues to autism, and who knows those stories better than the parents of children with autism?

One last thought for my heroic fellow parents out there: Many of you have tried for years to tell your story.  To be heard.  You are tired and frustrated.  You read the articles yesterday and said “well I could have told you that!  In fact I tried to tell you that.  You just weren’t listening.”

I know how you feel.  I am one of you.  Bittersweet, this news.

But if there is even a chance that today is a new day in understanding autism, in listening to parents, in a renewed willingness for professionals and researchers to partner with parents – isn’t it worth another try?

Sources

Recent study: http://archpsyc.ama-assn.org/cgi/content/full/archgenpsychiatry.2011.76

CBS News article http://www.cbsnews.com/8301-504763_162-20076822-10391704.html

IACC http://iacc.hhs.gov/