I frequently present at trainings, webinars, and conferences on various topics related to autism. In one conference, I talked to mental health providers about autistic differences.
The subject matter felt very basic to me, but it’s easy for me to lose sight of how much of a paradigm shift autistic-positive messaging is for people who only know of autism as a series of deficits.
Author’s note: some minor details changed for the sake of anonymity.
Towards the end of the presentation, there were breakout rooms. What this means is that all the people in a virtual conference were randomly sorted into small groups. This is intended to be a space of reflection to talk about how the material impacted them or how they can use the material in the future.
As a speaker, I was tasked with hopping around to different breakout rooms to answer any questions people had. It was like being teleported randomly into the middle of different conversations.
I want to write about conversations that happened in two of those rooms.
Breakout Room 1
In the first room, a woman said that she watched me interacting with my friend who was co-presenting and realized that autistic people have these very fluid, seamless friendships and deep connections full of humor and nuance. It caused her to challenge herself about how she had historically used the word “awkward” to characterize autistic people. Then she asked me what I thought about what she said.
I told her that now that I know I’m autistic and am in the position I’m in (as a high-profile advocate), I’m often in meetings wherein the majority of us are autistic and there are one or two non-autistic people.
In those spaces, the non-autistic people are awkward, they say the wrong things, they don’t get our jokes, and they try hard to relate but can’t. They’re also absolutely cognitively exhausted trying to process the social and communication differences whereas we feel energized at the end.
Just observing autistics being charismatic (differently), comfortable (differently), funny (differently), and intuitive (differently) shifted how she understood us in a major way.
Non-autistics rarely get to see us in conditions optimized for us.
Breakout Room 2
In the second room, I was “teleported” in while a woman was speaking. She was emotional and trying not to cry.
She was non-autistic but had been raised by autistic parents and had autistic siblings (though undiagnosed at the time). She was somewhere between seething and despondent that I had not talked about how it is so hard for neurotypical people to be in a majority-autistic family.
At first, it reminded me of those old experiments where white high school students fell apart when they experienced racism, even just for a few minutes when they knew it was just for a temporary experiment. That’s not to say that racism and ableism are the same, because they are not, but that it is profound when someone in a privileged position experiences what it’s like to to lose their majority position for just a few minutes.
For people who live with oppression every day, they have to learn to accept that kind of behavior from others without showing their emotions for the sake of their safety.
But the difference was, this woman wasn’t in a fake experiment. This was her family who surrounded her during her most formative years.
I validated for her that, yes, it is absolutely hard to be in the neurominority, regardless of neurotype. It is a death of a thousand papercuts (with occasional bullet wounds) where all your relational instincts fail you, and you feel so forever out of sync.
She was in the neurominority in her most important developmental setting— at home with her family.
She had spent a lot of time in her adult life reading books about “Asperger’s” (this was over ten years ago when that was a common diagnosis), and those books had validated her by reassuring her that her parents were broken and at fault by default. She internalized the message that her family couldn’t relate to her or meet her needs because they were inherently missing pieces of their humanity.
I could tell she was angry at me, and she even said she felt like it was hard to say those things in front of a “person with autism.” Her anger was visceral, too. Her whole body shook with it.
I’ve been where she was and recognized that pain and those emotions. Sort of.
Thinking of us autistics as inherently broken had made it easier for her to process those feelings of being the “other” in her family.
I had mentioned in my presentation how autistic kids, because they didn’t tend to perceive people in relation to social hierarchies, can prefer being treated like equals with adults, and that autistic parents and adults tend to really value kids’ autonomy.
That’s fair. She was acknowledging that children have different needs, and those needs are related to their neurology.
The Harms of Misinformation
The books and articles she had read had convinced her that her parents just had no empathy or capacity for understanding anyone’s needs. Seeing my friend and me co-presenting, laughing, interacting fluently, and seeing other professionals valuing our insights made her angry.
People weren’t supposed to see us as fully human equals who had different— not broken or incomplete— heuristics (internal rules) that would impact how they relate to others.
She had trouble gathering and verbalizing her thoughts, and her eyes watered. Essentially, she was experiencing what we autistics would call situational mutism— or the type of communication barrier that is anxiety-driven and a result of years of having communication not be fully understood or accurately interpreted.
She wiped away tears and said that as a child, she was looking for more attention, overt nurturing, rules, structure, and discipline. That level of autonomy and personal space is what an autistic person might crave, but it felt like neglect to her.
It was very sad. She had real trauma, like almost all autistics who didn’t have an autistic parent.
My Childhood Was a Mirror Image of Hers, the Same but in Reverse
I had non-autistic parents. Or, at least, my much more dominant parent was non-autistic. The jury is still out on if my dad is autistic. He definitely has traits, but I’m not sure. But my mom is definitely not autistic.
Three of my 4 grandparents were definitely autistic. I was very close to my maternal grandparents growing up. They only lived a few houses away, and everything in my soul was drawn to them like a cosmic magnet during every waking hour.
I thought about how I felt like my grandfather was the kindest, warmest man ever, but most people (even if they loved him) found him terrifying, pedantic, and far too blunt. My nickname was “little buddy” and his was “aye buddy” because that was his greeting to everyone regardless of relationship, gender, or social status. (Autistic people can struggle with matching names to faces.)
I was his constant sidekick.
We literally communicated with noises, and when I went away to college, he would write me letters or send me cards wherein he just spelled noises— mostly R’s in varrying sizes.
I was desperate to learn anything he had to teach me, and he used everything he did with me as a teaching opportunity. I learned all kinds of things about circuitry, horticulture, raising chickens, song birds, water purification, gardening, auto mechanics— all the things.
But I always knew that other people just didn’t, or couldn’t, bond in the same ways with him. Most people loved him, but they found him intimidating and terrifying— too honest, too direct, too confrontational, too explosive. They didn’t see him as the “let’s grab lunch” type of relationship.
But making him angry, dysregulating him and setting him off on a shouting and swearing reel, was my favorite pastime. I would laugh so hard, and he would ham it up and be extra because I thought it was so funny. I sometimes worried I would literally die because he made me laugh so hard that I couldn’t catch my breath.
The economy collapsed decades ago in coal country, so villages of yardsale and flea markets popped up in the abandoned parking lots and on the foundations of burned down buildings. I would ask him to stop at the flea markets, then pull a stunt— like the time I asked for two dollars and a cardboard box.
His sense of adventure was stronger than his sense of self-preservation. So he gave me the money and asked around for a box until he found one.
We went home with a live adult duck.
Another time, I hatched a rooster in an incubator, and he disassembled my grandmother’s dining room— much to her chagrin— so I could raise that rooster in the house for a while. Its name was Union Carbide.
I never once felt even remotely unsafe around him.
My relationship at home was not so smooth…
Everything is much better when everyone involved has great tools and information. My parents didn’t have that luxury in the 80s in the rural backwoods coal mining camp where I grew up, and the harder they tried, the more friction there was.
All their efforts failed, so they just kept trying harder. My dad worked the “hoot owl” (evening) shift in the mines six days a week and is very passive, so my mom had her hands full with three autistic kids.
Plus, I was the only girl out of my whole family— even of all my cousins. I was also the most stereotypically masculine, and that was problematic in that place and time. I had no “Southern grace.” I was fire and gasoline, a powder keg of dynamite.
Everything, from the clothes I wore, to the food I ate and when and how I ate it, to holidays, to posture, to social gatherings, to sports, to gender expression, to the way religion was practiced, to my gait, to homework, to how I interacted with friends became increasingly more and more about control and management as I did everything differently from how I was “supposed to.”
I just kept being not-normal. I was full of demand avoidance, and they wanted me to submit to authority.
I had to write a Bible verse over and over and over, thousands of times, as a punishment in school:
Obey them that have the rule over you, and submit yourselves: for they watch for your souls, as they that must give account, that they may do it with joy, and not with grief: for that is unprofitable for you.-Hebrews 13:17, King James Version
My mom was wired to value social hierarchy, so “normal” was the gold standard. I resisted, she doubled up on control. I resisted harder, she controlled with increasing strictness. By my final year of high school, this struggle had become so extreme that she was my school’s principal, taught 5 of my 7 classes, coached my volleyball team, and chaperoned every trip I ever took.
Reconciling the Past with a Future-Minded Paradigm
I moved out right after graduating high school. It was not until after an autism diagnosis in my mid-30s that we started to understand each other and build a healthier relationship. We had no framework to understand that we were just very different.
She never wanted to be that mom. I never wanted to be that kid.
I think what happened to her happens to a lot of parents of autistic kids. She wanted better for me than what she thought the world was going to give me, so she needed me to be able to comply.
And I understand better now what she was doing and why, but it took me a couple decades to get to this place.
She was trying to break me in so that I would fall into place because I was not compatible with broader society. She was trying to protect me and literally built a whole world around me with herself as the authority to do just that.
What we have in common as parents is that we are both willing to rearrange the entire hostile world for our kids— we just had different ideas of how to sort the pieces. She tried to protect me with the same energy that I use to protect my child. But her instincts made her think the best way to do that was to make me fit.
It was never going to happen, so I found every rebellion I could sink my fangs into to prove it.
Meanwhile, my grandparents thought I was the sweetest, easiest, most agreeable child in the world. I never once told them no or had any conflict with them. Never once wanted to. They didn’t even see normal or have it as a value.
Now, as an autistic parent to an autistic child, my relationship with my child is just like my relationship with my grandfather. I can’t connect like that with most kids, and it would be so hard painful not to be able to— but at least there’s better information available now to help with that.
It makes me feel so sad for my mom. She was doing what she thought was best and what her instincts told her to do. She was trying to make sure I knew how to belong and be a fit— and that’s the lowest priority on my list of needs.
My mom’s parenting instincts may have been exactly what that woman in the second breakout room needed… maybe that woman would have loved tagging along to baby showers, wearing dresses, playing with dolls, Girl Scouts, busy schedules, ballet lessons, vacations, little league sports, play dates, Sunday School, piano lessons…
Maybe they would have had very few conflicts. Maybe they would have felt like the great mother and the great child we wanted to be for each other.
Prejudice Holds Dominant Identities in Place
The way most autistic people have to live every day, in every setting— at home, at school, at work– makes them a minority with instincts different from most people’s.
The difference is there are not tons of books out there telling autistic people that everyone who ever misunderstood them—intentionally or unintentionally— was just too broken to even be able to care.
No one reassures autistic people that they are burdened for having to live with non-autistics. No one tells us that those who caused us harm and even trauma were the broken ones and we were normal and whole and deserved better.
We do not ever get the benefit of the doubt that we are the default way to be human. We are never the “gold standard.”
We are demonized as not being able to feel emotions or empathy, as not caring about people around us, and sometimes as being sadistic.
Can you imagine if this woman had looked for support and answers, and all she found were tons of books and articles and groups set up to help autistics cope with and grieve having a non-autistic child?
Can you imagine if she only had access to information that claimed she was broken and awkward and had no empathy or social grace? That made her feel like what needs she had were a result of her brain being defective?
Can you imagine if the whole structure of society agreed that she was the problem and her parents were victims? That she needed to be cured or enrolled in a 40-hour-a-week intervention therapy so she could learn to overcome her “challenging” and “attention seeking” behavior?
She didn’t deserve to see herself as broken, and neither do I.
Society is broken. It’s standardized, colonized, and pathologized.
In that system, there’s no hope of healing.
For that woman, framing her parents as broken was an illusion that wouldn’t ever give her the insight she needed to understand her childhood. Eventually, if it wasn’t from me and my co-presenter, someone would have shattered the illusion that was holding her identity in place.
I mentioned that autistic people— like any people— could be abusive, and was about to explain that if she had experienced abuse, it was inexcusable regardless of the neurotype of her parents.
She interrupted me at that point and said she knew her parents were great people who loved her and were doing their best. That’s when she really broke down. It seemed like that was the most bitter part for her.
She had witnessed her parents effortlessly interacting with each other, her siblings, and their similarly-different friends— but no matter how hard she’d tried, she never could connect the same way.
I know what that’s like.
She couldn’t think of her parents as abusive, so she was validated when all that pain of missed connections was explained in the books she’d read and the research she’d done as them having deficits.
Those books describe autistic people as “mind blind” (that’s the actual terminology) and not being able to perspective-take or relate to others. She had learned (falsely) that autistics couldn’t form deep connections and were happy with surface-level interactions.
I was taking that illusion from her, and I imagine it was like losing a religion suddenly.
The truth is that no one was broken. They all needed better information. If they were good parents, they would have done everything they could to relate to and get to know their child.
But if we have that hierarchy in place, a perpetual unhealthy codependency is automatic where one person sees themselves as the savior who has to fix or carry the burden and the other has to be reliant on the “default” as being the authority on everything— even what it means to be human.
So much pain can be avoided for everyone if we chronicle our differences and help each other to have translation guides. Just like learning a new language as an adult, it won’t ever be as effortless as it is for native speakers— but it goes a long way to bridge communication gaps.
I like to think— hope— that both of our parents would have been able to understand and accommodate us better had they had better resources.
Where I felt under constant duress for being too controlled and too pressured, she felt under duress with the lack of social structure and no chain of command. I felt suffocated, and she felt neglected. I had too many rules and too much oversight, she longed for more of those things. I hated the pressure to “know my place,” but she felt disconnected and as if she didn’t have any place to belong. I wanted to author an identity separate from others, she wanted to belong to an identity.
Of course, all children, regardless of neurotype, have different needs. I am not the same as every autistic, and she is not the same as every non-autistic.
We have both grieved what could have been had we all had an understanding of who we were, what we needed, and how to bridge those perceptive differences. But she now has to grieve again and unpack all the lies she was told and learn to see her family as different, not broken.
I was not offended by her anger towards me, her clipped words through gritted teeth, her discomfort, or her scowl. She had been socialized to see me as having no idea what I was talking about because, to her, I couldn’t. She had propped her emotional equanimity up on the notion that I was too “mind blind” to understand nuance.
I suspect she always knew, down deep, that wasn’t true.
Those lies never really benefited her, either.
The misinformation she had did not help her to heal. She had biases to overcome, and both of us were victims of the misinformation about autism.
NeuroClastic Is a Love Letter
When you’re in the autistic community, you quickly learn that most autistic people don’t have the best relationships with their non-autistic parents.
The comments on this Instagram post from Asiatu Lawoyin are telling:
We want to help non-autistic parents and their kids to avoid this kind of pain caused by having different ways of being.
They will never read articles Autistics write. They’ll be annoyed we’re infiltrating the autism narrative.
This whole site is a love letter to both autistic people and those who provide services to, parent, employ, or support autistic people.
We want to help people avoid the totally unnecessary pain most of us have experienced.
That means non-autistics will have to abandon the “experts” and pop psychologists at the top of the academic and social food chains peddling the “broken neurotypical” narrative of autism and will need to listen to us.
Parents reach out or leave comments sometimes. It is too late for them. They are learning only after their children are no longer alive. “I wish I had found this site years ago” is the tragic refrain.
We want to see healing happen.
Those illusions and prejudices will not hold relationships and identities together forever. There’s hope, and we can help each other get to better tomorrows.
- What autistics mean when we say this world is not made for us: How fun activities push autistics into the margins - December 23, 2022
- Being a Great Parent to Your Autistic Child at Fall Festivals and Halloween Events - October 31, 2022
- Who Am I? Printable Resource for Connecting with Your Core Self - October 3, 2022