Finding Mary

Introduction There are far too many families traveling the road to autism recovery these days. That road is more like a long and winding super highway, actually, and it is getting more and more crowded by the day. As many as 1 in 100 children are now diagnosed with autism disorders, according to a briefing from the Centers for Disease Control and Prevention in October, 2009. That alarming ratio has been worsening for at least a decade now, to the point that there are now well over half a million American children with autism. Add in the unknowable total of children and adults worldwide that are grappling with autism disorders and we are in the midst of a major crisis early in this century. People with autism exhibit various traits depending on the severity of their condition. These often include lack of eye contact, hand flapping, poor or no social skills, sparse or no language, picky eating, difficulty transitioning from one activity to another, obsessions with a specific object or subject and an inclination to throw horrific tantrums if they don’t get what they want when they want it. My daughter Mary was diagnosed with autism in 2005 and she demonstrated all of those characteristics at one time or another. Mary is now 8, and some of those traits still surface from time to time, even as we proceed further and further along the autism recovery road. For sure, Mary has made great strides and improvements. There are times when it feels like we’re cruising along that road to recovery at 65 miles per hour in a convertible red sports car, the wind whooshing through our hair as Mary makes great leaps forward in her recovery. We are all grins and high-fives as we zip along the open highway. Then again, there are other times when it feels like the road to recovery is completely littered with potholes, the gas tank is almost empty and we’re stuck in bumper to bumper traffic. Those are the times when there seems to be no progress taking place and frustration and stress are the order of the day. You wake up each morning and take stock of the “road conditions:” will this be a top-down cruising day or will we be mired in traffic and headed nowhere? The emotions yo-yo back and forth as you see and read the media reports. Some days you hear of another autistic child “recovered,” some fortunate one who followed a treatment program that had them speeding along the recovery road as if behind the wheel of a Porsche 911 on the German autobahn. On one hand you are encouraged and happy for that child and his or her family and friends – what a relief they must feel! On the other hand, you look at your situation and wonder what’s going to be the big breakthrough that finally allows you to reach that destination, and why haven’t you gotten there yet? Other days you read about a family that is struggling so mightily with autism (or another disability) that the family is barely functioning. There are children with such severe autism that they don’t ever speak or use the toilet or show warmth and emotion with their families. Often those situations tear a family apart – there is no recovery super highway for them, often just stress and depression and quite often divorce. Following along with the highway metaphor, those families are broken down on the side of the road and it just breaks your heart. Then you look at your own situation and are thankful for whatever strides you’ve made in the recovery process. In our case, we feel quite fortunate that Mary has responded so well to many treatments. She is what is often called “high-functioning” in the autism community: she can dress and feed herself, she speaks, albeit not in long or detailed conversations, she’s toilet trained, she attends a public school, she can read books and she shows warmth and emotions and feelings toward others on a regular basis. We constantly remind ourselves to stay positive and believe in the ultimate outcome. In the song “Walk On,” Bono of the rock band U2 sang: You’re packing a suitcase for a place, none of us has been, a place that has to be believed, to be seen. That’s how we feel about our journey with Mary. We believe she will be recovered completely and soon, now we just have to get to that place. While we remain optimistic and believing, raising an autistic child is nevertheless in many ways like caring for a 3-year-old indefinitely, even with all the progress Mary has made. Even as we see improvements in Mary’s behavior and academics, there are still too often those moments that cause your blood to boil or your heart to skip a beat. While Mary can sit and read a book, she can’t pick up many basic social cues and determine appropriate public behavior. She also tends to do whatever she wants, when she wants – the mindset of a 3-year-old – which can be frustrating for all. For example, in the past year as a 7-year-old Mary: • Wandered off on her own at the park when the rest of the family was playing together because she decided she was ready to go home; • Sprayed shaving cream all over the bathroom sink and mirror at her piano teacher’s apartment because it looked fun; • Opened her mother’s make-up bag and rubbed make-up all over the bedspread, mirror and dresser for reasons known only to her; • Took a package of vegan cheese out of the refrigerator and sat on the couch eating slice after slice and just dropped the wrappers on the floor; • Screamed at the top of her lungs “different shirt, different shirt” about a dozen times at the swimming pool club when the only dry shirt we brought was a tank top that she didn’t feel like wearing that day. Most people expect more of a 7-year-old, but with autism it’s a mixed bag every day. She can act 7 or 3 or anywhere in between on any given day and minute. Mary’s bewildering behavior at times reminds me of another favorite U2 song lyric, if I can be so bold as to quote my favorite band twice in one introductory chapter! In the song “Miracle Drug” Bono sings: I want to trip inside your head, spend the day there, to hear the things you haven’t said, and see what you might see. That’s exactly how Debby and I feel about Mary…oh what we would give to get inside her head for a day and view the world through her eyes and with her mind. Fortunately there’s never been a better time to confront autism, because awareness is at an all-time high and increasing all the time. There are therapies and strategies for reversing and minimizing autism that are becoming more widely available, even if there are dissenters and naysayers around every corner when discussing just about any treatment options. Celebrities and media personalities are focusing on autism and money is being raised worldwide in the hopes of discovering a medical breakthrough to cure autism. The reality is that nobody knows what causes autism and why children are affected in so many different ways. Some people blame the rise in autism on vaccines, others believe it may be genetic, still others think it is the result of the increasing number of toxins in our water, air and food. Truth is nobody knows – for now there is no cure, just that long road to a possible recovery that may or may not ever be reached. Even those that reach the destination and are considered recovered are said to occasionally show quirky elements of their past, so the term “recovered” is generally used instead of “cured” because to be cured suggests there are no remaining traces of the condition. After four years on the autism road to recovery, it’s sometimes hard to believe that at one time we never knew this road existed. During her first two years, Mary reached her developmental milestones and brought joy and sunshine into everyone’s lives. She seemed to be doing so well, a laughing, singing, dancing little girl with the curls of brown hair flowing down her back.