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.
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