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By Way of Introduction and An Explanation in Defense of my Parents
or, This is neither an apology nor a desire to reconnect, it’s a recognition of what is
My name is John and I am the third oldest of eight children. I have an older brother and an older sister and four younger brothers and a younger sister. There are fourteen years between my oldest and youngest siblings and about thirteen months between me and my younger brother. Not that age differences matter after decades of being alive, but when it comes to my story - the story I’m telling, years and months start to make parts of my life make sense.
I was born in Denver, Colorado and after I was born, there were complications and I was moved into the ICU1. My mother doesn’t remember whether my heart was beating too fast or too slow, just that there was a problem. In either case, no one knew whether or not I would survive and instead of having a brand new baby they could hold and love, take home and show off, they had the idea of a child which resulted in someone they could see or hold or share with others. Borrowing from the thought experiment Schrödinger’s Cat2, I was both alive and dead until something changed.
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I was born into the covenant in the Mormon church. Because of my mother’s religious beliefs she started to pray when she realized something was wrong. Her prayers were for me to be healed, to get better. She wanted to bring home her baby. When that didn’t work and something shifted inside of her, she changed her prayers to God’s will to be done. She was prepared for me to die and this change became a faith affirming experience.
My mother found the spiritual fortitude to accept I was going to die. For her, accepting that I was going to die was an answer to her Schrödinger’s Cat prayer problem.
I don’t know how long I was in the hospital or how long my mother spent praying for me to get better or what changed when she decided to give up on my ever going home. What I’ve come to accept is that the answers to these questions don’t exist and if they did the answers would be unreliable. The hospital records don’t exist anymore. I can’t interview the doctors or nurses. The people who would’ve been in my parents life back then don’t exist for me now. What’s worse is I’ve come to find Mormon’s as unreliable and willing to tell white lies or revised truths in service of helping people feel better.
What I do know is how long it takes to grow a baby from insemination to delivery and my younger brother is thirteen months, eighteen days younger than me. A month earlier and we would’v been Irish Twins3. Instead, we were referred to as the Bobbsey Twins4. I hated being called a twin.
I was raised in what I refer to as an Orthodox Mormon household. The preferred name for the church itself and members is the Church of Jesus Christ of Latter-day Saints. I am officially no longer a member, nor are my wife and children. No longer being part of Mormonism is a good thing.
My wife and I intentionally left all religion about ten years ago. There are times I look back at that period. Until recently, I was worried about publicly stating I’m exMormon or that Mormonism in all its colors is a well documented, full blown lie. I was raised to believe those who left Mormonism were anti-Mormon. I am5.
What has become clear in recent years is that I have fundamentally different ideas about the world than my parents do. We both see and approach the world from different points-of-view. These differences begin with my birth and life and extends into almost everything I’ve ever done, every decision I’ve ever made, and the way my parents and siblings have chosen to interact with me6. Today, I believe my parents did give up on me as a baby and when they thought I wasn’t going to survive they replaced me. I also know my childhood is lost in the life and experiences of my younger brother. These are two areas where healing and finding common ground are nearly impossible.
The defense of my parents, though, isn’t found in our differences. I can’t change them and I’m not going to try. My parents are from a different generation from me and are from different generations to each other. One was born at the end of the Great Depression. The other was born at the end of Word War II. They precede the Boomers and they have very different ideas about how children should be raised.
My father was raised by a man who was either left with his babysitter as a young child or was an illegitimate child of the woman who raised him7. My grandfather, who died in 1958, raised my father in the way he knew, which meant hitting. When my father got in trouble he was hit. When I got into trouble I was hit, which was exactly what I knew to expect whenever I knowingly did something my parents would disaprove of.
Which leads into one of the questions about adults who are seeking diagnosis for autism:
Were you abused as a child?
The objective of the question isn’t to pass judgement on parents, but rather to determine whether or not abuse led to characteristics that are similar to people who are autistic. I’ve found the question doesn’t matter as the outcome is always someone who has trouble connecting with the world around them. The difference is found in what kind of therapy and treatment exists for the abused child as opposed to the autistic child, now adult.
Being diagnosed with autism wasn’t possible for me as a child. I believe my parents were anti-therapy, anti-mental health, and anti-help. They raised me to be stubbornly independent, insofar as that’s even possible. At the same time, they raised me to be very dependent because I was different and special.
What is true is how I was raised and the lack of help meant that I did consider suicide on more than one occasion. Once in front of my parents while my father was lecturing about something I’d done and how it was bad and I'd be lucky to stay out of prison. He stopped lecturing and started telling me how God had told him what I was thinking. My father was trained in criminology and law enforcement, it’s what he did. God said nothing, instead his instincts told him my attitude had changed and I was actively planning something else.
Rather than let me go to bed or do what I was planning, he continued to talk and talk and talk. When I finally left my parents room and went to bed, it was to fall asleep. I was too tired to act. The thing neither of my parents ever bothered about, as far as I could tell, was to make sure those thoughts never returned or to seek out real help for what I was going through. Seeking help would’ve been a sign of weakness and a betrayal to one of my mother’s beliefs.
What they didn’t know8 was this wasn’t my first go-round with suicidal thoughts nor would it be my last. All they did was keep me awake long enough that I most likely wouldn't act. Which is how I stayed alive that night.
I know without any doubt that neither of my parents know nor understand me. They've never asked questions. The information they serve up as evidence is often observational or second and third hand. There isn't an ounce of willingness left in them to put in any effort to listen to me. There may have been a period where they were willing to try, but if true those attempts are as lost to time as my childhood is lost in someone else's life9.
My parents may or may not need religion. I can’t know that, but what I do know is they allow it to inform a disproportionally high level of their lives and the negative aspects of Mormonism were allowed to dictate how I lived. I now know a strict, religious upbringing isn’t good for anyone10. Mine was filled with lies and manipulation, an expectation to give everything I had at an organization that doesn't care about people as people. I was left in the care of leaders who actively looked for ways to harm me or who ignored the harm that was caused by others.
I was born in 1974 a year after Roe v. Wade was decided. When I was born, my parents made a choice to have me. They chose to get pregnant. They chose to keep me. They chose to bring me home from the hospital. They chose to raise me.
I share this not because it’s in any way a criticism against being born or people having children. It is, however, an observation on who makes what choices. My parents made choices that had nothing to do with me even though those same choices resulted in me being born. They are also responsible for the choices that left me wondering who I am and what was I like as a child.
My parents are from generations where children were considered extensions of their parents. The name I was given at birth is a family name and I was taught that I needed to live up to the honor of the man who possessed it before me. Children were born into emotional and financial obligation. Mormonism furthers this obligation by teaching each child born picked their parents. Which means, as a Mormon, I chose the obligation I was born into whether I remembered it or not.
In September 1993 I went on a Mormon mission to San Jose, California. Less than a year later, while I was living in Prunedale, California, the DSM-IV was released. This is the Diagnostic and Statistical Manual of Mental Disorders. Prior to this release, someone who was diagnosed with autism would’ve been considered too disabled to expect to ever live on their own.
Eventually, the DSM IV-TR was released and with it HFA11 and Asperger's Syndrome12, which is where I would've been disagnosed under different circumstances. However, as a child and since after World War II, in the United States, a diagnosis of autism was considered a worse case scenario with no execptation for the child, or adult, to have or express emotions, communicate effectiveley, or take care of themselves.
What people knew about autism, and still believe to be true about autism, was that it was bad. Really bad. In 2001, as autism diagnoses were on the rise in Silicon Valley (San Jose, California and surrounding cities) Steve Silberman wrote an article for Wired titled The Geek Syndrome13. The article presented autism in a negative light and as a pandemic that was on the rise. Years later, Steve Silberman would write a follow-up book titled Neurotribes: The Legacy of Autism and the Future of Neurodiversity14 that acts as a longer form correction of the misapprehensions from his Wired article.
People look at autism as a bad thing and my parents aren’t exceptions. They are, as is true of all distribution patterns, the rule. For them an admission of autism or any mental disorder was bad. If one of their children had autism, that would be bad for them socially. My parents had a social life and children, while important to them for reasons, were also the objects of other people’s judgements. Mormonism with all its preaching of acceptance is very judgmental and those, like me, who fall outside what is considered normal aren’t accepted or embraced15.
Going backward into my mother’s upbringing and relationships, her mother and sisters and sisters-in-law, was how a mother who had autistic children were viewed by the public and professionally. The phrase is: refrigerator mother. They were supposed to have been cold during pregnancy and distant at birth. The child had come out damaged because the mother was, somehow, damaged.
Which meant my mother’s mantra: I do not produce defective children, is an important road sign in my attempt to understand how I was raised and why so much of who I am could be ignored or beaten out of me.
The reason my mother’s mantra has meaning was an aspect of her upbringing and generation. A defective child was a child with some birth defect or disorder. Like autism. A defective child is an autistic child and I was both defective and autistic. My mother, and therefore my father, couldn’t identify me defective because it meant she was a bad mother. She’d failed.
Having me meant my mother had somehow failed and failure wasn’t an option.
How we define success and failure is always subjective. For Mormon mother’s its having children and raising them to remain Mormon. For Mormon father’s its providing for families and being priesthood holders. For Mormon children it’s growing up within the faith and remaining faithful and active. There’s more: marriage, family, education, and career. The biggest concern Mormon’s have is being successful enough to stand out and if the parents aren’t as successful as they think they should be, the success transfers to their children who then need to have children, and a spouse, and careers, and education or training.
My parents are the standard for Mormons. They are just like all of the parents from their generation. My mother wanted to measure her success through having six sons all of whom were all Eagle Scouts and Returned Missionaries, married in a Mormon temple and successful16. By being autistic and leaving Mormonism, I've become a disapointment to my parents.
I have a lot of reasons why I won’t talk to my parents about any of this. I know they lack the ability to talk about it. My mother once told me to stop trying to talk to my grandma about a sensitive subject because “She’s too old and it’s been too long.” It had been two weeks. I want to believe my mother was looking out for grandma, but really she was shutting down having to hear about grandma being a bad person.
By encouraging me to drop something uncomfortable, my mother, both of my parents, set the groundwork for our relationship today.
I don’t get to change my parents and by extension they don’t get to change me. Nor am I concerned about making changes. Estrangement was easy. All I had to do was stop trying.
What I can do moving forward is to look for answers and questions, in that order. I can continue to look for my past and I can try to understand. My parents are the villains in my story and while that may not seem fair or reasonable, too bad. They are also my parents and as every adult comes to discover, a part of me will always want to have a different relationship while recognizing I’m done trying.
By way of introduction, I’m an adult who was diagnosed with autism and in the more than ten years since, I continue to look for answers. Especially when those answers can and do help my son who is also autistic. I’m here to share my autism and my world with you.
Intensive Care Unit, though today it would be the Neonatal or Newborn Intensive Care Unit.
Schrödinger’s Cat is a thought experiment that imagines a cat inside a box with a vial of poison. The poison is set to open at some random and unknowable time. Until the box is open, the fate of the cat cannot be known and can therefore be thought of as both alive and dead or in a quantum state. It’s only through opening the box and looking inside can one determine whether or not the cat is alive or dead. http://plato.stanford.edu/entries/thought-experiment/.
There will be a whole post on respect and Mormonism and why remaining quiet out of respect for others beliefs isn’t respectful.
There are filial exceptions to this, my younger sister is one as is, oddly, the one brother who’s never met my wife or children.
I have an answer to this question, but the answer isn’t the story the family has talked about for 100 years and therefore isn’t desired.
… and still don’t unless they’ve found and are reading this …
I’ve tried to get my parents and many of siblings to remember anything they could.
I’m not sharing a belief. I know a religious upbringing isn’t a good thing and the evidence and studies, the news articles and people who represent the religious upbringing support what I know and a lot of the world knows, but can’t talk about because there are a vocal minority who think the only way to raise a child is in a strict religious setting.
High Functioning Autism
There will be more in later posts on Hans Asperger, Leo Kanner, and others who are today considered pioneers in autism research and diagnosis.
If curious, follow the news on Mormonism and their stance on LGBTQ+ communities and members or others who fall outside the Mormon standard. It’s not pretty.
The only two of these that are actual statements my mother made to me are Eagle Scout and Returned Missionary, of which I am both.