Why Participate in Research?

At the Bernier Lab, we conduct research related to genetic and neurocognitive underpinning of  Autism Spectrum Disorder (ASD). Our research studies cover a wide range of key areas in autism research. Our research participants are families with and without children with autism. We provide diagnostic evaluations, as well as cognitive and communication assessments for those participating in our studies.

What’s the difference between research and clinical genetic testing?

Our research results are considered preliminary because they will be conducted in a research lab, not through a CLIA-certified clinical lab that is required to do triple checks to confirm findings. We encourage you to contact your pediatrician/primary care provider for referrals to a medical geneticist.

What genetic testing do we do?

We send samples taken during our testing process to a genetics research lab for several kinds of genetic testing. We will use existing genetic tests, such as microarray and exome sequencing, and others as well.  One of the advantages of participating in this kind of research is that we are always using the most cutting edge technologies.

Reasons to Participate in Autism Research

When my daughter was diagnosed at age two, I so wished there was a test that could tell us more than the fact that she met criteria for autism spectrum disorder. “Is autism in our family tree?” I wondered, thinking back to a quirky great aunt or two. “Did I do or not do something to cause this?” and “What specific treatments offer her the best chances for an optimal outcome?” were the other two questions that for years haunted me.

There were not many research studies back then and science seemed glacially slow to me considering I had worked with adults with autism in the early 80’s and had thought that we’d have figured this out by the time I had kids. Fast-forward to today when parents have the opportunity to participate in many studies aimed at answering these same questions.

With an already crazy-busy life, why would parents even consider adding one more thing to the mix? I can think of five good reasons!

1. Knowledge is empowering.

We’re learning that this disorder we call autism is quite genetically complex, accounting for the broad spectrum of presentation in individuals. The unknown is often what scares us the most. Realizing that there are dedicated people trying to find answers is reassuring and learning more about their work can help build confidence.

2. Science gives us hope.

With adversity, it always helps to have hope that things can and will get better. The way I see it, the only way this will happen is if we find answers to the many questions an autism diagnosis brings.

3. Research informs clinical care.

What scientists learn in the lab can directly translate to improved clinical care in our child’s clinic visits. For example, behaviorally based therapy for autism, now the only empirically supported treatment, at one point was only a research idea. More recently, with advances in understanding the genetics of autism, for families with identified genetic events there are now specific treatment guidelines with information on what symptoms to monitor as well as opportunities to meet and engage with other families with the same genetic event.

4. Research leads to more tailored treatment.

Recent genetic studies are yielding promising clues to better understanding autism which means more specific treatment can be tailored to an individual’s unique genetic profile. This focused approach means parents save time, money, and effort.

5. We’re all in this together.

Whether your child is 4 or 40, we all have the same fervent desire to improve their and our quality of life. Science depends upon numbers to show patterns, differences, and provide statistically significant results. Each of us adds to this effort for the greater good.

– “5 Good Reasons to Participate in Autism Research”  Adapted from original post on 4/20/16 by Lynn Vigo, MSW, LICSW on The Autism Blog (http://theautismblog.seattlechildrens.org/)