In honor of Autism Awareness month I have the privilege of interviewing my friend, editor, and fellow parent of a child on the autism spectrum. I first heard of Robert when someone on an on-line support group for parents told me about his documentary entitled, Come Back Jack. I remember having a cathartic cry when I saw it because Jack was so much like my son. It made me feel as though I were not alone in experiencing both the joys and struggles of parenting a child who has autism. I wrote about my reaction to his film to my support group. My written “review” of Come Back Jack was read by a member who just happened to be Robert’s neighbor! She hand delivered a copy of my post to him and then he contacted me soon after. My initial mortification turned to gratitude when Robert invited my son and me to be part of an upcoming film he was creating about autism. And more than several years after our documentary debut, Robert had graciously invited me to contribute the first chapter in a book entitled, Embracing Autism.
So it is my pleasure to introduce to you Robert Parish.
So why don’t we start off with you telling our readers here on Health Central who you are and what you are about.
Robert Parish. Otherwise known as Jack’s Dad. I’ve been in the Autism world since my son was diagnosed in 1996. Since then I’ve produced more than 100 media projects on ASD, including several award-winning documentaries. I’ve also hosted a regular program on Autism One Radio, and have presented at dozens of conferences, large and small. Last year, my first book on the subject (EMBRACING AUTISM…Connecting and Communicating with Children in the Autism Spectrum) was published by Jossey-Bass. More information about all my ASD work can be found here.
As you know, April is Autism Awareness Month. Do you think having a month dedicated to Autism awareness helps?
I do. I believe that people are starting to FINALLY take this epidemic seriously. In part that has to do with the powers-that-be designating a time period to recognize ASD. April is perfect. Spring - it’s a season of hope and growth. Plus, spring and the change of seasons is a major element of my favorite ASD-themed movie of all time, BEING THERE, starring Peter Sellers and Shirley Maclaine.
How would you define autism? What is it exactly?
My favorite definition, which I think is the most perfect one I’ve ever read, came from writer and ASD Mom Lynn Fremer :
“A neurological glitch characterized by obscure talents, impatience, extreme sensitivity, determination, frivolity and merriment, concealed intelligence, excessive and/or infrequent speech and tornado-like behaviors that may be acceptable in a fraternity house, but not in the checkout line. Despite these distinctions, individuals with Autism share an occasional smile that will melt a parent’s heart.”
When were you first aware of autism?
Like most, my first l look at Autism came from the movie RAINMAN. Although I still love the film, in retrospect it is not at all an accurate view of this “difference.” It does capture one small segment of the diagnosis, but not the reality for most of us. After Jack was born, he developed typically, but then - at about 16 months, he started exhibiting some disconnected behaviors. The most striking was captured on videotape - when he was playing with the leaves of a plant, totally oblivious to anything else around him. The truth is I thought he had suddenly gone deaf.
What early warning signs did you see in Jack that in retrospect you can now say that they were markers of autism?
Jack was able to block everything out and fixate on whatever was in front of him. He had no interest socializing or typical play. He especially loved “playing with” videotapes - fast-forwarding and rewinding endlessly, something he still does today.
What has been the greatest challenge for you in raising a son who has autism?
Staying connected to my son. In 2001, after a contentious divorce, Jack’s mother fought hard to relocate my son to another state. I objected as strongly as I could. The legal system was called upon to resolve the matter. And, as usual, the party with the most money emerged victorious. The truth is I had virtually exhausted my bank account fighting on behalf of my daughter, who did not want to move from Ohio. She is 14 months older than her little brother and is now a junior honor student in high school.
Something I wrote recently about long-distance parenting sums up my greatest challenge:
Often, children and adults with an ASD diagnosis are able to embrace and process only the parts of our world that are right in their faces. For instance, Jack can stand at a door leading to a playground, and say “Go outside and play!” When I ask him the specifics of what he’d like to do once we’re out there, he knows, but is unable to tell me.
Long distance parenting, something I did and continue to do very well with my two older boys (they’re college grads and live in other parts of the country), is impossible with Jack. He cannot, and has no interest in carrying on a telephone conversation, sending an email or text message. In fact, the list of things that Jack is not interested in is infinite. Non-face-to-face communication is probably near the top of this list.
Sadly, during the past 8 years, our relationship has suffered. Jack and I now see each other only occasionally. And, our visits only last for an hour or two, because - as he’s gotten older - transitions have become more and more difficult for him.
What has brought you the greatest joy in this experience of parenting a child on the autism spectrum?
The media work that my son has inspired which has connected me to so many amazing parents and professionals who I would not have met otherwise.
What would you say to provide some hope to parents who have a child who has just been diagnosed with autism?
Love your child for who he or she actually is. Be there for him/her no matter what.
Great advice Robert! Thank you so much for doing this interview for Health Central!
I am a mother, a writer, and now an MS patient