SPARK Plug: Thought on Participating in Autism Research

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. 

The One Thing We Shouldn't Tell Children with Autism

Last year, I was asked to be a guest speaker at a middle school in Brooklyn for their Peace & Diversity Conference day. I spoke there to a group of sixth graders, and then had lunch with a self-contained class of sixth graders with autism. I was asked to return again this year, and made the trek out to Brooklyn at the end of January, just hours ahead of a snowy winter storm.

I can still see him so clearly. The small one, with thick, black-rimmed glasses that were almost too big for his face, sitting there tugging nervously at the hem of his shirt. He wasn't as gregarious as some of the other children--not like the one I affectionately refer to as Mr. Mayor, because he probably will be one someday--but he made an impression that I won't soon forget.

It's not often that I have the opportunity to be around sixth graders, let alone ones who are as self-aware and bright as they were. One by one, they came over to sit at my table and began asking me questions in that combination of wide-eyed innocent and weathered that only 12-year-olds seem to do so well. They sometimes spoke over each other, and as their enthusiasm grew, the questions flew out almost before their brains had a chance to finish coming up with them.

Then it was the small boy’s turn. He cleared his throat and looked up at me shyly.

“What was it like when you had autism?”

 I pause.

“Well…I still have autism,” I said, the full weight and meaning of his question just starting to sink in.

It’s no secret that most of the media portrayals of autism predominantly feature young children. Autistic adults—who are not necessarily cute, small, or more easily managed—are given very little of the spotlight in comparison. But perhaps there is more to it than that.

Every day, many children with autism undergo various types of therapies—ABA, Floortime, social skills groups, and so on. Self-contained classrooms are cropping up in schools all across the country, accompanied by a veritable army of teachers, psychologists, speech therapists, aides, and other professionals.  All of this in the name of helping these kids to overcome challenges, to thrive, and to succeed.

But increasingly, “success” seems to be defined as “no longer having or appearing to have autism.”

Parents, teachers, people with the very best of intentions are doing a great disservice to children with autism by sending a loud and specific message: That this is only temporary, something you are getting help for now, so that you—and everyone else—won’t have to deal with it later.

In reality, nothing could be further from the truth.

As a child, I did not undergo early invention. My parents tried one thing after another to help me, a desperate if not futile effort in a world that had little (if any) awareness or understanding of autism. The challenges I faced were many, yet few were greater than the low expectations and doubt in my abilities that others had for me.

Today, I am an autism consultant, a professional public speaker, a writer, and an advocate. I’ve surpassed the beliefs of those who said I would not amount to anything, who told my parents I would not graduate high school, let alone attend college. I have a Masters degree, I have my own business, and I have a life that took me years of struggle to build. My story only started because I believed it was worth writing, and even now, it is still being written.

I have overcome tremendous obstacles because I have worked hard to do so, not because I no longer have autism.

The fear of children with autism facing certain challenges for the rest of their lives is overwhelming, and often is the driving force for parents and teachers to find help for these children. But because autism is an integral part of who we are, overcoming those challenges does not and will not suddenly make us neurotypical. It just means that we are going to grow up and have those challenges replaced by new ones.

Therapies and treatments have their place, and can be meaningful and effective tools for assisting autistic children and their families. But preparing your child to be an adult with autism is the best and most important thing that you can do to help them live in this world.

I hope I will get to see that little boy with the thick-rimmed glasses again. 

I hope he grows into his striped shirt, grows into the person that he’s going to become, a person who will give so much to this world. I hope he knows how special he is, and that he can be autistic and succeed, be loved, be a friend, and be just exactly who he is.

All of our children can.