Or the details of my life that are probably not worth knowing
My name is John Hattaway and in 2012 I was diagnosed with autism. There is an entire story behind getting to thirty-eight years old and not knowing I was ASD1, and I will share that story, but for now I am introducing a more general me.
I was born in 1974 in Denver, Colorado. The weather was cold2. I’m told my father had to keep a fire going under the oil pan3. Soon after I was born I was taken from my parents and put into ICU. I don’t know why I was in the ICU, what I’ve been told was that my heart was either beating too fast or too slow4. In either case, I wasn’t put into a nursery. My mother didn’t have a well-baby bed sitting next to hers. Neither of my parents could hold court and show me off. I was born and I was unrealized.
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For my mother, this became a faith crisis, which is a way of saying she began to pray that God would save my life5. I’m absolutely certain my mother began to bargain with God. For the religiously inclined, or those who’ve had enough religious experience, bargaining with God is akin to Hannah promising to give Samuel to God if God would let him live6. I don’t know how to process either a faith crisis or bargaining with God since God, by the definition I was raised with, is all-powerful and all-knowing. What my mother wanted was immaterial since God already knew was going to happen.
Eventually, my mother stopped praying for me to be healed and instead prayed:
Thy will be done
… and from that moment forward I think I stopped being her kid and became something else7.
My father, understanding that I was probably going to die and I hope in service to what he believed was necessary for God and religion asked their Mormon Bishop to help give me a name and a blessing. I can say this because I know my parents, my father, enough to know that “best medical advice” would’ve been important. Thinking about what this represents, I now believe both of my parents had given up on me because both of my parents thought I was going to die.
Religiously speaking, at least before I died, what my father did was essential because I would be added to God’s list of people. While not baptism, which for Mormon’s doesn’t happen until at least eight-years-of-age, this was clearly the next best thing. It was, for pre-grieving parents, a salve on their pain. Whether or not they recognize this, they were preparing for the next steps in life.
What I’ve spent a lot of time thinking about and I’ve come to understand is my mother’s “Thy will be done,” was her acknowledgment of my pending death. It was a form of religious permission accept her pioneer heritage8.
Then I didn’t die and my parents got to take me home. I have no experience with this kind of change and have no stories or shared experiences from my parents to be able to guess how me getting better changed them. Maybe they were happy. I hope they were. What I wonder about is if it changed them enough or if preparing for me to die meant something else.
During our time in Denver, the next two of my siblings were born. Four, a boy, and Five, a girl. When we moved to Virginia Six, a brother, was born. This was followed by a move to California where Seven, also a boy, was born. Then Texas and ten years and three months after I was born and put into the ICU, my youngest brother, Eight, was born.
I don’t have a lot of memories about growing up in Virginia or California and most of my clear and firm memories begin around the time Eight was born. Before that, my mother would occasionally talk about Colorado and the playhouse or fort my father built in the backyard or as though I should remember it9. Or there’d be mentions of Sterling, Virginia and the things we did there. What I’ve found to be true is some memories are strong and clear and everything else exists in a world where I have to find proof I existed on my own.
There are events I remember. For example, Six climbed onto the stove and turned it on and his legs were severely burned. I don’t remember him climbing onto the stove, nor do I remember the ambulance. I don’t remember my One putting out the burning pajamas, or that my parents had been out of the house. I do remember being told about the hospital visits. I remember Six being washed and the burns abraded. I remember the time spent helping Six recuperate.
Four and I shared a bedroom in Virginia, which was the beginning of our arguments over who got to sleep in what bed. The room was on the second floor at the top of the stairs and had a window that looked out over a cement patio where my father stored his ladders. One night, I remember having trouble sleeping and looking out the window only to see someone pale and white and scary staring back at me10. I remember waking up on Christmas Eve and hearing noises and looking out over the living room from the top of the stairs and seeing my parents putting Christmas together. My four-year-old brain understood who Santa Claus was and Christmas stopped being magical. It was about pretending to believe so I got presents.
Virginia was probably where, based on my mother’s stories, I followed my older brother to school, pushing my matchbox cars. My mother didn’t know I was missing with three other children that needed to be taken care of. A neighbor found me and brought me home. Virginia was where we had strawberry’s growing next to the back door and where we would find turtles eating the strawberries. This was, based on stories, where my father stopped a neighbor kid from hitting his sister11. As an adult, the neighbor girl eventually found my parents to thank them.
Our house in California was in Mission Viejo in Orange County. We lived on a road that ended in a cul-de-sac. Our house was on the outside of a ninety-degree turn about halfway down. At the top of the main road was a park and the bottom was opposite a new development where construction vehicles were parked. The equipment operators never locked the cabs or took the keys out of the machines.
My father built a pergola over the back patio while we lived there. My older brother had rabbit hutches in the backyard along one of the fences. All of the boys, four of us at the time, shared a room, with Four and me on one side and One and Six on the other side. One literally drew a line to delineate his side of the room from our side of the room. We weren’t allowed to cross his line. Eventually, when Seven was moved out of my parents room, Four and I shared our side with him.
There are many things I remember from California, riding my bike along trails and falling off and getting hurt and then picking myself up and heading on my way. Or walking or riding to school, which meant going out to the main road and heading down the hill, turning left at the bottom and following the road to the intersection. Crossing a busy highway and then walking with packs of kids along a walking trail until we got to school. I remember climbing all over construction vehicles. Defacing new playground toys. Deciding it was easier to get home by climbing the side of the hill opposite the school, only to learn that climbing in dirt wasn’t easier than walking around the long way.
My problem is I don’t remember people. I don’t remember what it was actually like to be in that house, or in Virginia. I don’t remember the experience of California and as a result I struggle with the memories I do have. They are disconnected from everything else while the memories that are connected are associated with pain.
My first memory of Texas was being semi-awake in a gas station across from the McDonald’s near the high school with my father trying to figure out where we were going. We’d spend some time in a motel near the mall, but on that day, my first day in Temple, Texas, I was hot and uncomfortable and aware that things were different. The motel we were staying in was across an open field from the mall and when I’d get bored sitting in a cramped motel room with too many people, I’d walk across the field. One of my first Texas experiences was coming across a diamondback rattlesnake slithering across the trail I was making.
I’m sure a lot of this is benign memories and information. It’s uninteresting. There’s little in the way of historical facts or a record that matters. Except, each of these places has details and in some cases I’ve been able to verify the details. I’ve been back to the house in Virginia when I was working in Washington, D.C. and while I didn’t stop or knock on the door, I was able to see that I what I remembered about the house and the area was accurate. I think, if I could, I’d return to the house in California just to see how accurate my memory of that area is, but forty years is a long time and a lot has changed12.
I graduated high school in 1993 and three months later I went on a Mormon mission. When I got home from my mission, I decided the best medicine for the worst two years of my life13 was to get away from everyone and I got a job driving long haul semis across the country. Six months later, I realized my mistake and quit and went to work in a bookstore and then for a local internet service provider where I did tech support and built and fixed computers. Eventually, I moved to Utah to try going to school and I realized I wasn’t taking school seriously so I changed my focus to having a job and paying bills.
Regardless of my stated objectives, I was always focused on writing and reading and throughout my life I’ve bought books to read and digest. Regardless of location, the one constant in my life are stacks of books or shelves covered in books in the rooms where I lived. As I got older the books changed and the content matured, but the stacks remained. Even today, my bedroom and office, the living areas and in storage are lots of books. It’s part of who I am.
Eventually, I moved to New Hampshire and started going to school again then transferred to BYU14 where I met Erin. We got married and a year later we had our first child15. A few months later I graduated with a Bachelor of Arts in English and my little family moved from Utah to Massachusetts. When the process of finding a well-paying job seemed impossible16, I went on to get a Masters of Fine Arts in Creative Writing and Erin earned a Masters in Education.
What is true about my story before Erin and before Massachusetts is the complete lack of mention of autism or any developmental disorder. There are no mentions of anxiety or depression or ADHD or anything else, all aspects of ASD I deal with and have dealt with for my entire life.
When we lived in Virginia, my mother was asked to bring Four and me to a special education preschool so the children there had normal children17 to emulate. I question whether or not my mother was asked to come because the children needed other children to mirror or if she was asked to bring me and Four because I was different and someone wanted to try to help. In the late 1970s and early 1980s, being special was a bad thing18 and today I believe my parents actively rejected the possibility that I was different19.
As a parent, my older son was included in a preschool where he was a NT child as part of a class that had ASD children and children with other disorders. He was one of the NT role models in the class. This was intentional on our part. We wanted him to have this kind of exposure to other children of all ability levels. If for no other reason than to help him build and understand an area of empathy many NT children seem to lack.
There are a lot of points in my life where I’m certain my parents should’ve been proactive about and identified the differences that were my behavior and life. I know they noticed them because I was raised to understand that the rules that applied to my older brother and sister were not the rules that were used with me and the rules for my younger siblings were also different20. My takeaway has been that I’m different and should therefore be treated differently.
What little I have been told about my life before any reliable memories exist was that I didn’t move a lot in utero. I was a big baby and I’d kick once a day to let my mother know I was alive. When I didn’t kick for a couple of days, she’d rush to the hospital to make sure I was still alive. I’ve also been told that anger and yelling, people being too emotional would cause me to shut down and to withdraw.
My parents knew there was something different about me and I spent a lot of my life believing because I was different I was being punished for the actions of my older brother and sister. I had to be better and I had to toe-the-line and do everything I was told because someone else screwed up and broke the rules. My older brother and sister were normal children and teenagers. They snuck out. They came home late. Rather than acknowledging maybe I was both different and willing to follow the rules, I was told that my parents wouldn’t bail me out of jail when I was arrested.
My older brother and sister were both violent toward me and when I pushed back or said something I was the one who was punished. They didn’t want a younger sibling sent on dates with them as a chaperone or a younger sibling period21. There were no safe places for me.
When I became an adult and started moving around, there would be periodic check-ins with my father on my spending habits, the nature of what I was doing, where I lived, how I went about conducting myself. It was almost as though the only way my parents could deal with me was to reduce our interactions to premeditated and mechanical operations from which I could be judged. Different interactions meant a different parent. Open disapproval was always my father. Open questioning of benign actions or activities was always my mother.
If I wasn’t being judged, I was being attacked for talking about things that interested me, telling my parents or siblings about what I’d recently learned, or questioned on the veracity and legitimacy of what I was saying. There were often concerted attacks on my source material. I’d gotten so used to this kind of competitive interaction, an expectation that I deserved to be attacked, that I was surprised and upset when Erin pointed out how I was treated22.
There were times when it got to be too much23.
A lot of this, for me, tracks back to thoughts of being a newborn and what it must’ve been like for my parents. At what point did they decide I was too much effort?
Because I’ve had a child who spent his first week of life in NICU, I also know there are parents, mothers and fathers, who have to return to their lives, their work, the outside world because the baby is going to be in the NICU for an indeterminate amount of time. There isn’t an immediate plan to take the child home and the best the parents can do is to get done with work and go to the hospital for a couple hours before going home and sleeping and doing it all over again the next day.
Fortunately, Cy spent one week in the NICU24.
For my parents, especially my father, staying with me was never an option in 1974. Not only did the hospital not let my parents see me while I was in the ICU, I have two older siblings who were small and needed to be taken care of. I don’t know if one of my grandmothers showed up to help or not. Maybe. That information has never been shared with me. Even if that had been the case, I know both of my grandmother’s would’ve had dates by which they would be done, no exceptions.
I don’t know what research existed at the time about the need for infants and physical contact and the mortality rates of infants in the ICU who weren’t held25. Was I held and by who? Was there more to my care than scheduled feeding and changing my diaper? What was the medical wisdom in 1973 and 1974?
Answering these questions are avenues to follow. They informs parts of who I am. The answers also don’t matter. I know who didn’t hold me and I know why they didn’t hold me. They weren’t allowed26.
Today, we know that physical contact with infants is important and essential for their development. Having physical contact, being held, is important and not being held leads to a higher mortality rate among infants and children. Which leads back to the early signs of being autistic. I wasn’t the most demanding or naturally affectionate child. Does my early ICU experience explain this or was it because of autism?
ASD stands for Autism Spectrum Disorder, this is how I refer to myself as in I’m ASD or I have ASD and it’s how I refer to my son with autism or he also has ASD.
More details. Things like this are important as I begin to piece together parts of my early life.
This is a question that will reappear over and over and over again as the specifics of what was wrong with me are lost to time.
Mormonism swill be dealt with in more detail in the future.
And then Samuel went to live with the Priests in the Temple and God spoke to him and the Priest, not at all jealous of Samuel, told Samuel to listen and thus begins the story of a biblical prophet in a deal between a self-serving God and the Samuel’s mother. Here’s the Wikipedia article on Hanna as the story is about her.
This is supposition on my part.
At some point I’ll need to find where I’ve read about pioneer and religious people who literally lost an infant and then proceeded to have another child to replace the one they lost. I think the context is relevant.
The phrase I wish more people would adopt and use in terms of small children is infantile amnesia. This is the reason why people don’t remember being infants or small children.
Most likely my pasty white reflection looking back in at me.
Hitting is a theme and when I hear these kinds of stories, the theme is dark.
Plus, I’m actively avoiding cross the Mississippi River or heading into the Western United States.
There’s a Mormon movie or musical titled The Best Two Years, it’s probably absolutely not propaganda.
BYU stands for Brigham Young University. I will refer to the school only by its initials, the acronym.
A son we named Cy.
I worked as an overnight stocker for Walmart; answered incoming calls for the New York State Family Court system; and finally as the Loss Prevention Lead for a Kmart. None of these jobs paid above minimum wage.
Today I’d refer to this as neurotypical or NT.
One of the phrases that will come up again and again is Refrigerator Mother. Another is Defective Children. These are terms I’ll come back to and talk about as I write.
The phrase I referenced in my first post was “I do not produce defective children.” This idea of what it means to be a mother will come up a lot.
While I use this as an example of my parents seeing and not seeing my ASD, I believe in different sets of rules based on the person and circumstances. The needs of the individual dictate what has to be explicitly defined.
I can go into additional details here and I’m sure both my older brother and older sister would point out specific examples of this not being true, not wanting younger siblings. Maybe they simply didn’t want me around and when they were finally willing to have me around as an adult, I neither wanted nor needed older siblings. I needed people I could rely on in my life.
Erin’s observation began in Church and extended to family. My changes started in Church, I stopped interacting with people so I wasn’t confrontational, and extended to my parents and siblings.
I touch on this in the first post, By Way of Introduction, and will come back to it. I believe the way in which I reacted is directly related to having ASD and having ASD the comorbid conditions ignored.
Yes. I know perfectly well what was wrong with him when he was born and I live with that knowledge every day.
It’s called The Bucharest Project and because of a government overthrow in Romania, 170,000 children were neglected.
At some point, I’ll explore the research on ASD and being touched, affection and brushing, and how this helps ASD children develop.