By Jill Escher, president Autism Society San Francisco Bay Area, and founder, Escher Fund for Autism
At the recent Autism Society of America conference in New Orleans, I was honored to present on the Importance of Citizen Science in Advancing Autism Research along with Alycia Halladay, PhD, Chief Science Officer of the Autism Science Foundation. An interest in science is making a comeback at ASA and I was pleased to be part of the discussion. In this talk I offered my perspective about how ordinary families can help to move the field forward.
My first example was based on my own experience as an "accidental hypothesis hunter." I have two kids with nonverbal, severe forms of autism. By 2010 I had pretty much given up even pondering what could have caused these unprecedented, bizarre, and tragic abnormalities. Nothing made sense, and none of our clinicians or researchers could offer any explanation other than "Maybe it's genetic, after all you have two." But we have no autism or mental disability in our family histories, and genetic testing revealed nothing amiss.
Science is just scratching the surface of this "time bomb" gene-environment phenomenon in humans. But genetic toxicologists and those who study environmental mutagenesis agree that this is obviously an important question—can certain exposures such as pregnancy drugs and maternal smoking cause pathologies in grandchildren via molecular perturbation of the germline? As a Citizen Scientist, I'm leading the charge to have these questions asked and answered.
Aside from hypothesis hunting, families can get involved in philanthropy by raising money to fund studies in your specific field of interest, you can get involved with some of the emerging crowdsourcing efforts around treatments, subtypes, and cause, you can sit on an autism research advisory committee at your local university, you can advocate for more autism research, and you can educate your community and state about the autism numbers.
Both Alycia and I, joined by Dr. Amy Daniels of the Simons Foundation, strongly urged all autism families to get involved in research in some way. Here are two easy ideas: