The Road to an Autism Novel

A Parent's Journey with Two Sons with Autism

I remember the day in 1983 when I was driving up the Orange Freeway, barely able to see through my tears. My younger son, Don, had just been diagnosed with autism by a doctor at Children's Hospital of Orange County. It wasn't that we didn't know anything was wrong. We did. He had stopped talking. When he was upset, he was like a wild animal, digging his teeth into my arm and twisting, leaving huge red and blue welts. We had been through hearing tests and treatment and speech pathology. Then there were the doctors who not so subtly implied that the problem was behavioral and my fault. One was a disciple of Fox, a behavioral guru of the time. There was autism in the family. My husband's cousin had been diagnosed as a baby, but the onset of his autism had been attributed to a gamma globulin deficiency --- something my son didn't share.

The diagnosing doctor had been kind. She gave me a referral to B.J. Freeman at the Neuropsychiatric Institute (NPI) at UCLA. She offered to call my husband for me and give him the news. I declined her offer, feeling that a blow like that shouldn't come from a stranger. I gave some thought to driving my son and me into a wall, ending the problem there and then for both of us. I couldn't do it, not because I was afraid, but because I had to pick my older son, JJ, up at private school, where we'd enrolled him because he didn't fit in a normal public school environment.

JJ seemed almost the opposite of his brother. He had started reading spontaneously a week before he was two and rarely stopped talking. He was brilliant, going through primers that should have taken six months, in a week. He was also woefully poor at doing things that came naturally to other kids, like knowing not to change his clothes in public.. He was also clumsy and needed weekly sessions at the Sensory Motor Institute at Long Beach State University to improve his coordination. By the time I reached his school, I had dried my tears and didn't let on that anything was wrong. I didn't want to admit it to myself.

Visits to UCLA yielded another blow. My husband and I had taken JJ with us when we took Don to see Dr. Freeman. After she talked to him for a couple of minutes as he expounded on the differences between the different Superman symbols, she gave my husband and me a funny look and suggested we take JJ to see Dr. Ritvo, then the head of NPI. Dr.. Ritvo diagnosed JJ with autism in the residual state, one of the categories in the DSM at the time.

I found myself both devastated and encouraged. Yes I had two kids with autism, but I had managed with JJ, we were coping. I would manage with Don too. The words of doom we had heard at UCLA, that 95% of kids like Don ended up in institutions, would not apply to my son. He would be in the other 5%.

It was easier said than done. Bruno Bettelheim still held sway and many, including family, were quite willing to believe that everything was my fault, despite the genetic hints on my husband's side. Genetic linkages for autism had yet to be officially established. Dr. Freeman told me where to reach out for help: the local chapter of ASA, and the nearest Regional Center. I also was made aware that kids with developmental disabilities could be put in public school at age three, something my local district certainly had never mentioned. It took me two months to make the call to ASA, mostly because I couldn't get the words out of my mouth.

Once I did, I didn't stop talking anymore than JJ did. I was sent out as a speaker and moved up through the ranks. I was made a chapter vice president. Our family moved to Orange County on the advice of Dr. Freeman, to receive better services. I soon started an autism support group, and then re-founded an ASA chapter in Orange County that had been merged with the Long Beach Chapter when it's original founder had a stroke and could no longer manage it. Along the way I found out that strokes and other signs of stress were unfortunately too common among parents, especially mothers, of children. With autism. I did the best I could to help other parents I knew, even though I eventually went back to work. That was not easy to manage. At first I worked nights and my husband days, so we could split the time taking care of the kids when they weren't in school. Then I found part time work I could shoe horn in around my kid's needs and my responsibilities to ASA. Part time work as chemist is not easy to come by and I had to be creative, eventually becoming the co-founder and minority owner in a company. My computer guru husband worked full time making more money than I did, but I handled most of the responsibilities with they kids and still earned appreciable income. I also became a member of the National Board of ASA, its secretary, and finally its president. That meant working in the daytime, taking care of the kids, having my ear constantly to the phone for parents who called for advice and referral, then staying up at night and taking care of ASA business by computer modem, not a common thing at the time. When I left the presidency and then the ASA Board, I became CA State president and then went back to running my local chapter.

During all this time, one of my main coping mechanisms, indeed one I'd had since childhood, was writing. My writing was a strange brew. It started with poetry when I was six and graduated to short stories when I received my grandmother's old typewriter a few years later, There were plays and a simple musical that were actually put on at school. There was also what many might refer to scornfully as fan fiction, although at the time I don't believe the term existed. Multiple obsessions were involved including one about Star Trek which stretched through my teen years right through my time in graduate school. That writing brought me friendships with others who didn't fit the classic social mold. I continued writing when I was finally living what seemed to be a normal life with a husband, also a Trek fan, a house, and kids, but it took forms that looked more normal too. I sold some poetry and wrote a book on creating a babysitting coop, that I eventually gave away to a regional center.

The veneer of normalcy began to crumble even before Don's diagnosis when I was a stay at home mom and realized that watching four of another mother's kids was much easier than dealing with my own, even one at a time. I lapsed into obsession again as a refuge. After the diagnoses had taken place, even when when I managed to be out of the house at an autism conference, during every break in the presentations, I was back to writing dialog for a world into which I had a safe retreat. My full day's absence attending that conference caused such a regression in Don's behavior that I didn't dare stay away from him for much more than the time it took to shop for groceries. My TV oriented stories were the only place I could hide, and eventually they forged the escape hatch to my freedom.

A year after my self-imposed isolation, the fan club of the actor in the show I was writing about was having a writathon for those who were similarly obsessed. I desperately wanted to go and my dear husband Jim agreed to stay with the kids for a day while I did so. I drove for an hour and a half to reach a park in Arcadia where fans ate and chattered enthusiastically. When it came to the actual writing, when faced with a blank page I was the only one of the group who could summon the muse to put pen to paper. It began to rain and someone held an umbrella over my head while I crafted dialog for our hero. I made friends that day outside the circle of the autism community. It was wonderful and exhilarating.

My stomach was in my throat as I returned home, dreading what I might find, but Don was fine and my husband had survived the day. My way back to the world had opened wide. I found a job working a late swing shift in a medical lab, so I could sleep while the kids were at school. Our family was all together at dinner and my husband watched the boys in the evenings. I still had a chance to do my work for autism, especially after I shifted to a part time day job during the hours the boys were gone. I needed a writing obsession less and less and had very little time for one in any case. My partial ownership in a company came along. I still had legal pads on my desk for when I had a few minutes to spin a piece of a saga, but they were often buried under stacks of other things. The most important piece of writing I did was the Cheerful Chemist's Gluten Free Casein Free Cookbook. My family and Sunday School class served as guinea pigs for my recipes. The late Dr. Bernard Rimland wrote the introduction, edited, and distributed it through the Autism Research Institute (ARI) after assuring himself of quality through extensive personal sampling.

Life was working until the technology bubble burst and it became evident that my husband's job would be disappearing. The real estate bubble had yet to follow and living in Southern California was expensive. A satellite operation of my company, in Ohio, was working with a potential customer in Kentucky. I had been flying out on weekends to troubleshoot formulation and production problems but 9/11 hit and no one was flying anywhere for a while. Our customer decided that if we would have any chance of doing business, I would have to be in Ohio. My husband and I decided to relocate.

By that time the boys were theoretically adults. JJ was about to graduate from a combination of a christian college where our pastor was a professor, and a state university, with bachelors in both christian leadership and mechanical engineering, something not done before nor probably since. He decided to go with us. Don still had time left in public school. I was in contact with the special education direction in the small city to which were moving and she was prepared when Don started attending school there.

At first the move to Ohio seemed to be going well. We had moved at the end of May and the climate was similar to what Don had been accustomed, except that everything was green, a color he seemed to find calming. School had yet to start, but JJ and my husband were at home with Don. My husband was consulting, but his hours were largely his own. Our financial positions in the family had switched. I was now the major breadwinner. We had found a house only two miles from my lab. I still came home to make lunch, but during the day, with some help from JJ, my husband was the major caregiver.

In the Fall it seemed like things were really looking up. In Ohio, Don was able to have a dedicated aide, something he could never have in California. It turned out he needed one --- and it helped that the aide was big, male, and strong. Don had gotten increasingly violent, both at school and at home. He was now the largest member of the family at six feet tall and over two hundred pounds. At home I was his primary target. He would hit, punch, or more often pinch or bite. When he went on a rampage he would hunt for me until I had to lock myself in a room or in extreme cases hide in the small space under the basement stairs where no one else, especially Don, would fit. My husband did the best he could to protect me, sometimes putting himself between me and Don, but more often than not he couldn't get there fast enough. I wore nothing but long sleeves regardless of temperature, to cover the bruises on my arms. JJ did the best he could to help, but his brother often terrified him. I couldn't blame him. Don terrified me too.

We had discovered years earlier that Don was intensely sensitive to MSG. It was an accidental discovery. It has always given me headaches and one day I discovered that my headache corresponded exactly with violent behavior from Don. I eliminated all MSG from our household, developing my own recipes to replace Don's favorite foods that contained it. Don's violent behaviors immediately decreased by about seventy percent. It was this experience that stoked my interest in special dietary needs.

After months of battering in Ohio, I discovered that the food Don had demanded for his lunches in Ohio was full of MSG. We changed the situation and life became a lot more livable. There were still violent incidents, but they were occasional instead of almost daily. Eventually the situation improved even more when I found another approach to to controlling excess glutamate. Glutamate serves as an important neurotransmitter. Some medications affect it, including the Depakote Don was taking to control seizure activity. In a chemical journal that was part of my regular reading, I stumbled on the use of n-acetyl cysteine to control glutamate. N-acetyl cysteine (N.A.C.) is an amino acid pharmaceutical that is used to loosen mucus plugs and also is the antidote to Tylenol poisoning. It is a precursor to the amino acid glutathione. Glutathione complexes with glutamate in the liver, tying it up. The research I read related to disorders other than autism, but the biochemistry fit. While N.A.C. was available by prescription, it was also available over the counter at health food stores and on the internet. My research revealed no serious side effects or interactions. I talked to Don's doctor and sent him copies of research from two major universities. He didn't say no to a prescription, but we didn't get one either. I bought some N.A.C. at a local store. I tried it on myself first to make sure there were no untoward effects. I was happily surprised that it helped keep me from getting locked into unwanted loops of unpleasant and frightening thoughts. I started Don on N.A.C. and let his doctor know I had done so. His behaviors improved further and we were able to discontinue two prescription drugs the doctor had tried with less than great success, to control his remaining violent incidents.

Even though things finally improved with Don, the financial situation of our family seemed aimed for a downhill slide. Things had been on the edge since our move to Ohio. Even though I was acting as Q.C. Manager for both my little company and the two others owned by my majority partner, as well as a formulator, I was being paid twenty-five percent less than I had been promised. With my husband's contribution severely curtailed, things were tight and threatened to become tighter. I addition, Don was eligible for only one more year of school after which he was with my husband all day, hindering his ability to pursue other opportunities. We had yet to become eligible for respite, and special needs sitters were beyond our means. JJ had started graduate school and his time to help us with his brother was limited. Once more I retreated into a make believe world, only this time I was using a keyboard instead of a pen, a connecting with others on the internet. My first online effort involved writing part of a multi-author online story featuring my favorite vampire. It was a foreshadowing of things to come.

I prayed for divine intervention and for a while it seemed that God had sent an angel. We had a buyer for my partner's part of our little company. I was suddenly working for only one company instead of three, but making slightly more money. My lab was now located too far from our house to go home at lunchtime but the commute was still fairly short. My new partner was determined to put us on the road to going public. The journey was exhilarating. My work earned multiple patents both in the United States and abroad. As the sole inventor my resume looked very impressive. There was a publicity blitz resulting in interviews for newspapers and magazines as well as an appearance on Tech Trax on the Microsoft website. I was even interviewed on Ecuadoran radio. With the publicity came a flurry of awards for my technology. We received multiple offers for acquisition which would have resulted in receiving stock eligible to be traded on well known exchanges. As the minority partner, I wouldn't have been really rich, but I would have been comfortable. My partner turned the offers down. He wanted to go public by way of a reverse merger, a procedure which yields failure more often than it yields success. We did it anyway, and for a while I was doing pretty well. I was making more money than my husband ever had. We could afford some help with Don. Times seemed pretty good. I was pouring all my creative energy into company business and my writing fell off to almost nothing.

Some of the specifics are still before a judge, but stock fraud ensued and eventually our company was forced into bankruptcy. Everything I'd built for decades was wrenched away. I needed my writing more than any time except the earliest years after my sons' diagnoses. I became a daily part of the online fanfic community with positive reviews giving me confidence to try something more mainstream. By this time JJ had earned both a masters and a PhD. and had moved to another state to work. We had worked our way up a waiting list and Don was housed in an apartment five minutes from our house with one other young man with autism, and round the clock staff. He is now in a house, also with one other person and round the clock staff. We speak on the phone every day and I see him at least once a week.

Following the time honored advice of writing about what I know, I wrote about characters on the autism spectrum. My first novel, Singing the Solution is about an obviously ASD detective who usually sings because it's easier for him than talking. My hero, Cary Ellis, has a number of sensory and social challenges. He is highly competent at his job, in part because of autism related skills, although his partner Tamar usually does all the talking. He became a cop because although he was able to communicate and big and strong enough to defend himself, he found himself coming to the aid more vulnerable disabled classmates who were threatened bullying and even molestation. He sees himself as a protector. He collects comics and is obsessed with an anime show called Star Strider which gives him clues to solving cases. He's become quite adept at cooking to avoid textures he can't tolerate. Tamar and Cary learn from each other. She helps him in the social arena and he helps her learn to cook and opens up areas of interest she hadn't known existed. Singing the Solution was accepted for serialization on Channillo.com.

For my second book I became both more ambitious and more steeped in the autism theme. Based on all of both the strengths and weaknesses of individuals with autism and drawing on popular mythology, a high functioning individual with autism becomes a vampire. Rather than becoming a killer, he finds a way for both himself and many others to survive while hurting no one. It was written with both persons with autism and those who love them in mind, and miracle of miracles, a publisher agreed it was worth sharing with the world. That novel, Dark Awakening, is published by Snow Leopard and is now available on Amazon.  I have a new gluten free casein free cookbook that is available on Amazon as well  and I'm working on a sequel to Dark Awakening. A new short story featuring Cary and Tamar has also been included in 100 Voices an anthology by Centum Press.  Writing for the autism community has now become the guiding direction for my life.