I wrote this as an introduction to a discussion called Raised by Aspergers parent. It generated one response from someone who had a similar experience.
My mother never wanted to take anyone’s word for anything, always being suspect of what she could not see for herself. When I said that my father had Aspergers, an understanding I came to after a nephew was diagnosed as being on the spectrum and I did the research, she assumed I was just blowing smoke. She told my sister this after she saw a show on TLC profiling a man with Aspergers and was astounded to find that he was just like her husband! Maybe I wasn’t wrong after all, though she would never tell me.
I had no doubts. And when I said the word to the staff in the hospital, they just nodded their heads, the pattern coming clear to them.
What my mother never understood was that she too had Aspergers. To her, life was just a massive disappointment, a place where nobody made her happy, instead annoying her with their stupid insistence on doing things their own way. Everyone was out to hurt her, from her mother to her children. She could never make new friends, so she was just isolated, hurt and angry in ways that she could never really understand, instead just spraying her pain over her family.
At the table she could never seem to find the end of a story, instead having it waver on into dust. She was unable to pay attention to the stories of others, often just breaking in with her story or even walking away. When her children were hurt or angry she just cared that they were making her look bad. I didn’t stay home sick from school even one day after second grade; I knew that things would always be worse at home where I would be seen as a whining intrusion. There wasn’t going to be anyone at home to help me negotiate how to express and use my emotions in the world, rather there were going to be parents who would blast me for having the baffling damn emotions in the first place.
My mother was not physically engaged with her children, unable to play with them as she was not coordinated or athletic at all. She didn’t touch us except until she decided to surrogate spouse us in our teens.
Everything was all about her and her emotions, emotions that she had no way to understand, own or manage.
I could make a list of all of the personality issues I claimed about my mother over the years, including her profound narcissism and immense self-pity, but as I came to see her life as centred around the struggle with not being neuro-typical, it seemed to me that much of her challenges while not directly related to her Aspergers were very much connected to the frustration, hurt and separation that not being able to fit in, to feel seen, understood and valued caused over the years.
I took care of them in the last decade of their life, a crushing job. My mother was still angry at her mother, but the more I understood her as Aspergers, the more I felt for her mother who had a wilful and disconnected child growing up in the late 1920s and 30s, even before Dr. Asperger had identified the pattern.
I never saw myself as taking care of my mother but rather as helping my father take care of my mother. He was incredibly sweet and loving in his own crackpot engineer manner, always avoiding emotional conflict but willing to explain why those experts were idiots and why he had to publish another technical paper even though they always blocked him, one calling him a “sociopath.” He was a man who could not take yes for an answer, having to explain over and over and over again what we had already agreed with.
I knew that I had to be there to protect him or my mothers demands would crush him.
The impossible part of this was how it shaped me. I never learned to be grounded, confident that others would engage and understand me rather than making it all about them. I always felt unsafe at home and unsafe at school, where no one could understand the struggles in my home life. The strategies I modelled after the ones I saw my parents use were isolating and impossible, leaving me acting like I had Aspergers without the insulation that brings.
I became a caretaker very, very early. I stood up against them, earning me the nickname “Stupid” in the family, the target patient who called out the problem so must be silenced. The enmeshment with my parents was intense, and having no healthy models and support for owning my own life past the limits of their vision. I took care of them even in the face of people who thought I was a fool, for surely they were adults and didn’t need the kind of attention and protection I gave them.
There is no doubt that trying to hold my parents to any criteria of how people “should” act would be futile and offensive. They very much did the best they could even if that left their kids battered. I am more distressed by a society that had no way to reach them, to help them. They had no effective support for learning to manage their own way of mind.
When I was sent to a therapist in eighth grade (the one who told them to stop calling me “stupid”) I only agreed to go if someone would help my parents. The teachers lied to me about that, f course, as a kid I had no clout to get them help, because I was the problem, right? Since they wouldn’t help, though, I had to. They were who they were and would always be.
It was tough to the end. My mother would complain that my father had hurt her when he sometimes put the children first and I would scream inside, knowing that I was one of those children and that we needed and deserved to be protected. She complained to a health care aide so much that they blamed me for abuse and refused to come back. My sister spent time trying to placate my mother by deciding to leverage me to do the things I refused to let my mother manipulate me into doing, often leaving me crushed and alone even as I protected her, also somewhere on the spectrum.
The ability to both be hurt & angry while also being loving & caring is crucial in tending to parents. It was very important that I be understanding and compassionate, but that didn’t mean that I wasn’t also frustrated and pained while engaging them.
And the absolute worst part of all of this (and the much, much more that occurred) was how little of it I could explain to anyone else in the world. If you don’t know Aspergers, you can’t imagine what this was like. A very few people understand what having one parent was like, but with two, it is relentless and isolating. I would reach out to others, mostly getting the response of parents who just want their spectrum kids to be fixed, beyond any comprehensions.
If we don’t learn to trust other people with our tender heart when we are young can we ever really make up that ground? My sister spoke today of how a friend saw that if she was locked in her studio for days she would never be bored or desperate, only finding new projects to engage her. She knew this was rooted in her childhood experiences, where her room was safety. I laughed and noted how a friend when I was in college for education asked me if I played alone a lot as a child. “Is there any other way?” I answered.
My brother used a different strategy. Shielded by older siblings who took the brunt, he looked for new families to adopt, eventually joining the family of his wife who hated how his birth family didn’t venerate and celebrate her. His separation allowed him to become someone new and angry.
My immersion in a Aspergers world has shaped me in powerful ways. I am a master of the meta and the literal, a natural outcome of years of being the translator, helping them negotiate hospitals and systems and such, but my own dreams and emotions are stunted, never having the moments of childhood to return to. I was adultified early and it very much made me who I am.
I suspect this all is baffling and overwhelming, but that is just the expectation I have been trained for.