I was recently asked to take part in the SPARK (Simons Foundation Powering Autism Research for Knowledge) online research partnership, and was both excited and apprehensive to hear about the study’s purpose and intended goals.
One of the things I began to wonder was what this study could this mean for our understanding of autism—where it comes from, why the incidence rate has seemingly “increased” in the last few years, and how or if it travels through families. The autism narrative is often challenging to navigate, and it is my hope that a study like SPARK could be a map to help us find our way.
When we talk about autism, there often seems to be a great divide. On one side, there are personal anecdotes, stories from individuals and families of their own personal journeys on the spectrum. On the other side, there are scientists and researchers working endlessly to collect data and compile information about autism as it relates to a greater epidemiological picture.
Both sides have been and continue to be invested in finding the cause of autism, of whether environmental factors or heredity or something else hold the key to deciphering autism. The SPARK study has the potential to answer that question, to take the tiniest of saliva samples from our mouths to someone’s ears who can then say, “This is what causes autism.”
Along with illuminating causes, there is the possibility of this research being used to develop treatments for autism. While it is important to find ways of reducing or preventing self-injurious and other physically harmful behaviors sometimes associated with autism, we must also remember that autism is part of who a person is, and treatments should be administered with the person, not just the disorder, in mind.
Autism research has continued to expand over the last few years, and as we study the spectrum in a laboratory setting, it is imperative that autistic individuals be included in that research process—not only as subjects, but as co-investigators. Our triumphs and heartbreaks, our potential futures, our very lives are being put under the microscope, and it is we who have the greatest stake in this research.
One day, we will learn the results of the SPARK study, though it will take time for the full impact of those results to unfold. I am hopeful that the picture these results paint will show that autism is not a puzzle to be solved, but a story to be told. I want to see the answers and knowledge that we glean open a discussion on how we can improve the quality of life not just for future generations, but for individuals on the spectrum living in the world right now.
Most of all, I want those of us who have felt out of place in the world, in our communities, and in our families to learn through SPARK that what lives in our DNA is not something that was done to us, but part of what makes us who we are.