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 is serialized 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 an anthology by
Centum Press,
100 Voices Writing for the autism community has now become the guiding direction
for my life.
