By Jodi Murphy
I’m standing in the middle of the family room hugging a binder with a four inch spine and in it are carefully tabbed sections chronicling my son’s medical and developmental history. It feels awkward and uncomfortable to have and to be holding such a binder, because reading it will make any stranger feel pity for my family and a guilty relief that they don’t have a son with autism.
The binder is necessary for the battles that I have to fight on my son’s behalf, and it contains important information that I must keep in order for anyone who may have to take over if something happens to me or my husband. I can’t tell you how many times I’ve copied, synopsized, and sent off its contents in order to get the appropriate approvals or assistance or interventions.
But the binder isn’t the entire story. It’s just cold, detached, documentation of his Aspergers Syndrome and how it has clinically impacted him. The reality is so much better than that stupid binder.
I have no maternal instincts…or so I thought.
I never babysat. I rarely played with dolls. I didn’t ooh and ahh over new babies. I didn’t cry at ‘Kodak’ moments. So when I found out that I was pregnant, my happiness was tinged with an overwhelming anxiety…would I be a good mother?
But the minute, no, the second Jonathan emerged from my womb, I knew, KNEW, that I was put on this earth to be his mother.
First, understand the mindset during the 1980s about how autism was portrayed and talked about. Even though Aspergers Syndrome was classified by pediatrician Hans Asperger in 1944, it wasn’t even on the U.S. diagnosis radar back then. At least that was my experience.
I knew at 2, that something was up with my son but no medical professional or therapist ever mentioned or discussed it with us as a possible explanation for his developmental and social issues. When he played with cars, he turned them over, placed them up real close to his eyes and watched the wheels spin and spin and spin. He was fascinated by light and we’d go from mall to mall during the holidays to look at all the Christmas tree displays—and they had to be the multi-colored lights, not the plain white twinkles. He was captivated (no obsessed really) with the Tyrannosaurus Rex and collected every toy, book, and VHS on his prehistoric pal in order to learn and talk about it, literally non-stop. He paced around and around our coffee table engrossed in self-conversation.
With those kinds of behaviors and noticing he wasn’t following the typical developmental milestones of his peers, I’d ask medical professionals, “Is he autistic?” And the response was always a categorical “no,” followed by varying responses that I can boil down for you… I am an over-bearing, over-protective, over-reactive mom who just needed to relax and not worry so much.
It took until age 13 for a diagnosis of Aspergers Syndrome but we were already doing whatever we could to find him help and support where he needed it—occupational therapy, tutors, role-play, a magnificent school for children with learning disabilities—and my own ingenuity and creativity.
My husband comes from a big family and I have a rather large extended family. When Jonathan was born, he was the first of his generation. When you come from baby-obsessed families like ours, life is an endless supply of hugs, kisses, adoration and attention. He could make a crowded room grow quiet in an instant with his happy chatter or little baby steps. He always had a grandma or aunt or uncle wanting to hold him, and later, spend time playing and interacting with him.
At home, we gave him our attention and fostered his curiosities and interests. We practiced positive reinforcement and praise versus negative criticism as a way to change behaviors. He was showered with love and support, and yet he struggled with insecurities and lack of confidence.
What? John Lennon said “all you need is love!” What I realized is that unconditional love and support from your family is the foundation. They give you the strength to go out in the world and take risks because you know that family has your back and will be there with you every step of the way, no matter what. But self-esteem comes from personal achievement…you can praise and pass out certificates and stickers and clap and give your undivided attention, but you cannot “give” someone confidence.
I could see my son falling behind developmentally and academically with his peers. Even though he couldn’t express it, I could tell that he felt like someone who’ll never be as good as anyone else.
His social skills were (and still are) his biggest challenge. He used to call himself a hedgehog saying that “it’s difficult for hedgehogs to get close to other hedgehogs because of their spines. They’re afraid of getting hurt and that’s my problem …every time I reach out to people I am afraid of getting rejected.”
Aspergers Syndrome is a good news, bad news situation.
A diagnosis of a higher functioning form of autism is a good news, bad news situation. The good news is that he can, with the right interventions, learn to function independently in society. The bad news is that it is difficult, and challenging, to find the right professionals and services for his needs, especially now that he is an adult. Even if I can identify resources that can help, he usually doesn’t have access to them because, according to our state’s guidelines, he doesn’t constitute a “substantial disability.” It’s understandable, because the system is bursting at the seams for so many who need assistance, but tell that to him as he struggles to make his way in a world he just doesn’t quite understand.
I became hyper-aware and listened for anything he would talk about to give me a clue for finding something (anything) he was interested in where his involvement could result in personal achievement. Notice the “could.” No matter what I’d find, there was a risk that he’d get frustrated, feel like a failure and want to give up too soon. But I had to take that risk, so he had opportunities for success.
When he showed interest in (and a talent for) acting, I found opportunities for him to audition in community theater. The experience of performing on stage transformed him—the hedgehog disappeared and a new found confidence in his abilities and worth spilled over into his everyday life. And he had a pathway to college studies and a career.
He went to an accredited theater conservatory to study acting and took classes and workshops at an acclaimed voice studio in San Francisco tutored by industry professionals who taught him the proper techniques for working as a voice actor.
He excelled at both, earning cum laude status from the conservatory and landing an agent for voice over. He was always fearful of failure and not fitting in—but in spite of those fears he persevered. It took almost three times longer than the norm but we put no pressure on him to make some standard timetable. Everyone should be free from ‘typical’ anything and set their own pace for growth and success.
Jonathan’s gone on to work for many clients doing voices for some video games, toys, podcasts, children’s CDs, audio books, and apps. For the past 5 seasons, he’s been the ‘voice’ of California’s Great America Theme Park where hundreds of thousands visit each year and it’s his voice they hear on rides, in park announcements, and show intros.
A few years ago, I stopped working for my clients to become his marketing assistant for his professional voice acting career. An actor’s day is chaotic and unpredictable—experiences that are anathema to someone on the autism spectrum. My moral, administrative and marketing support allow him to focus on his strengths and not become overly anxious over tasks that are not.
I never stop thinking out-of-the-box for my through-the-cracks kid.
Jonathan receives no social security or financial aid of any kind. He relies on the income he can earn, supplemented by our support. But he wants to one day be free of that financial support and fully independent. So now I’m focused on how to help him reach this goal.
His client work ebbs and flows, so to provide more consistency and more ways for him to have meaningful work using his talents and abilities, I took on the initiative and risk of an entrepreneur. And then I became one!
I founded Geek Club Books with the idea to create a children’s story inspired by my son’s real life and told in a unique, charming and entertaining way to show how someone on the spectrum overcomes obstacles, triumphs over social anxieties, and thrives…quirks and all.
I chose to make the story an app so that Jonathan could do the narration and character voices. I worked with a talented creative team and app developers and released Mighty League in September 2013 on iTunes, Amazon and Google Play. I had no idea what the response would be, I just knew that what we created was high quality in terms of illustration and interactivity…but most of all it was authentic and from the heart.
What began from personal motive has grown into a global mission.
Feedback was overwhelming. Awards, yes. Top marks from reviewers, yes. But more important, parents let us know that for the first time, their children see themselves in a character they can relate to and in such a positive way, too; neurotypical sibs gained a better understanding of their brothers and sisters; and teachers started using it in their classrooms to teach acceptance of differences.
Setting out to help my son, I unleashed a passion in myself to take on a more global mission. In August 2014, Geek Club Books became a 501c3 nonprofit charity. We’re autism storytellers of hope through mobile children’s apps, autism education, empowerment programs and positive autism advocacy. We’re giving members of the autism community a platform and audience for expressing their hopes, dreams, successes and struggles. And in doing so, we’ll put a human face to autism for the public while they find their own self-acceptance and confidence.
I don’t know where this is going to lead for either Jonathan or me. But what I do know is that it feels right and I’ve learned from the very beginning of our journey together to trust my instincts. I also know that he’s thrived when he has meaningful work using his talents and abilities. I’ll never stop innovating and thinking out-of-the-box to help him and others feel accepted and valued.
So now we’re going beyond the story to entertain and educate with a social mission. We want to profoundly change how the world view’s autism. Though there is a long road ahead, I just know that I am on the right path, at the right time. We are already making a positive impact, one family at a time.
So please file away our black binder with all its clinical coldness and remember our real and hopeful story instead.