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.
“To non-autistic kids,” she told me, “that feels like neglect.”
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.
“Aye buddy! RrrRRrrRrrRRRrrrr. Love you always. RrrrRrrRrRRrrrr.”
-A card from my grandfather
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.
Processing Trauma
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.
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61 Responses
Many thanks Terra for this wonderful article. Most Autists are not born into healthy Autistic families. We have to co-create our families in our own space and time. In a healthy culture Autistic children are assisted in co-creating their unique Autistic families, but in our “civilisation” this cultural knowledge has been lost and is suppressed.
In Te Reo Māori the NeurodiVenture concept translates to Neurodivergent whānau (https://autcollab.org/community/neurodiventures/). Indigenous languages like Te Reo Māori have important words for concepts that have been suppressed by colonialism.
Whānau : extended family, family group, a familiar term of address to a number of people – the primary economic unit of traditional Māori society. In the modern context the term is sometimes used to include friends who may not have any kinship ties to other members.
There is an urgent need to catalyse Autistic collaboration and co-create healthy Neurodivergent and Autistic whānau all over the world. Autists depend on assistance from others in ways that differ from the cultural norm – and that is pathologised in hypernormative societies. However, the many ways in which non-autistic people depend on others is considered “normal”. The endless chains of trauma must be broken.
In mainstream society people don’t understand how Autistic people support each other, love each other, and care for each other in ways that go far beyond the culturally impaired neuronormative imagination.
There is the saying that “It takes a village to raise a child.” The Autistic translation of this saying is “For an Autistic person it takes an extended Autistic family to feel loved and alive.”
The Autistic Collaboration Trust is co-creating peer support services for Autistic trauma. I’ll write an article about that in the coming weeks. The Autistic community is invited to contribute ideas and experiences.
Very much looking forward to that read
The tale of your connection with your grandfather warmed my heart.
This reminds me of this story I wrote about my son (diagnosed autistic), my father, and me, and how we are probably all not neurotypical, and how I finally backed off and gave my son the space to be whoever he wanted to be.
https://blog.jimgrey.net/2020/04/24/live-life-own-terms/
I loved this. Welcome to the community. I have no doubts. I also cried when I saw the picture of your dad with Garrett. ❤️🙏
WOW this hit me where I live. So many things to relate to and emotions to sort. just…. WOW. Thanks from the bottom of my heart for this post!
I’ve experienced the dualism most overtly at autism-related events where the professionals and autistic people are really polarized (which seems to happen because the autism profession attracts the most allistic people). In some cases it just feels like parallel universes occupying the same space and there’s not a clear view from one into the other. In other cases I’ve seem them fight back pretty hard. As soon as they see us having fun, they can sense that they are missing out, and they retaliate by breaking us up or lecturing us about “behavior” or otherwise preventing autistic energy from collecting in one place, That fighting reaction reminds me a lot of the white response to those racism experiments that you mentioned. Losing privilege feels painful and feels like an urgent thing to stop.
Thanks so much for this truly insightful article! Can I solicit your opinion on something? I am looking for alternatives to ABA at my son’s elementary school. How can I get the school to understand that ABA needs to be a thing of the past and does not consider the whole child??
Thanks so much and best regards,
Aaron Shuck
i’ve heard cognitive behavior therapy is good. If he’s younger “floor time” is also great as it lends itself to the autonomy autistic people need. see if you can get him accommodations like dimming the lights, extra time on work, fidgets, noise cancelling headphones, the ability to leave the classroom for a few minutes if it gets too much, comprehensive specific instructions for work. giving him some strategies and pre-planned responses to common conversation routes can be greatly helpful. My school does SEL (Social Emotional Learning) and i find it really helps me.
A lot of the distruptive behavior is due to a hostile environment. Kids have meltdowns and stop being able to talk when their needs have been ignored and unmet for so long they explode or shut down. sensory accommodations can help tons with this! it sure would have helped me!
Those are some things that would have helped me. autism is a spectrum so i don’t know every side so most of my advice on accommodations is for sensory needs, which many autistic people have but make sure to talk to your son as an equal.
My mother has ADHD. I think ADHDers make great parents for autiatic kids
Hmm, I feel like I have a pretty good relationship with my autistic teenager and wondered why, but I do think I might have undiagnosed ADHD.
I love this post so much. I love your grandfather’s face and his letter to you! That’s communication! He’s got the type of face of people I’m drawn to… You can look at it and see what he’s thinking and feeling, right? And it’s a face I can remember! I spend time watching autistic YouTubers so I can hear and watch others who talk like me. I love to be able to easily follow what they say and think. That ease is a joy and makes me think that maybe I don’t have an auditory processing disorder!
It sounds like you handled the situation with the non-autistic daughter in such a healing way, with so much wisdom, insight, and compassion.
This is a wonderful and insightful article that I totally get.
I was very lucky in the fact that my home life was very calm, and I felt very loved, absolutely contrary to my experience of the outside world.
Thanks for another helpful mind readjustment. If this keeps up, I can foresee a day when I might have an actual sense of dignity (instead of just the defense mechanisms and compensations I’ve relied on so far).
Another wonderful piece, thank you for writing it.
Thank you for a very informative article. Up until my nephew was diagnosed with High functioning autism I never realized it ran in the family. After that diagnosis my mom mentioned that she used to have similar behaviors (hand waving, meltdowns, etc.) but coming from a country that would not tolerate those behaviors she learned to control them. I think I may be autistic as well but have never been diagnosed, My relationship with my mother has always been strained and she tries to act “normal” and I always had an issue with that and wouldn’t conform. In our case even though we may both be autistic my mother is so conditioned to mask that the bond as two autistic people isnt there.
Makes sense. I am autistic and have an (undiagnosed) autistic mother. She is a very very high masker who is very very bent on not standing out in public and on fitting social norms, who doesn’t realize that she isn’t masking anything at all, because she has no idea that what she’s trying to be is neurotypical; she just sees her issues as cultural issues.
I feel like I have moments where she and I can relate well to each other – usually it involves smoking weed together. But otherwise it’s like dealing with someone totally unaware of their own autism, who requires that I completely suppress any and all signs of my own.
Could you please elaborate on what the woman in breakout room one meant when she observed that autistic people have these very fluid, seamless friendships and deep connections full of humor and nuance. What is a fluid and seamless friendship?
Wow. This article hits home like you wouldn’t believe. We are non autistic parents to an autistic child. This child has endured so much pain and heartache, due to the narratives you describe, and our own ignorance as neurotypical parents, who just failed to “get him”, until it was too late. Yes, society and medicalised notions of disability need to be challenged at every level. It’s been a painful journey for us all.
Terra, a beautiful piece as usual. Gives me a lot to think about. I am a divorced dad, which means I see my daughter about 25 to 30% of the time in a 2 week cycle. Parenting an NT kid is a challenge for me. She doesn’t know what I mean a lot of the time, and the same is true in reverse. We hit a nadir last fall and are coming up from it now. More understanding and compassion is coming, I hope.
I see parents of autistic kids double down all the time on listening to the wrong people, and I see their kids get more and more suicidal. And they totally ignore all advice from me (an autistic adult) and other autistic adults. I just don’t know how to get them to listen. And it breaks my heart.
Jenny, I think a basic problem is that our real life lived experiences don’t offer the validity of having been certified by a non-autistic authorizing body which provides a piece of paper at multiple tens of thousands of dollars of cost which can be utilized to add initials behind our names.
(but that doesn’t explain why parents accept input from celebrities as though it were edicts from almighty God.)
(but that thing does bring to mind my saying that this thing about the USA having no official state religion is total BS, there is a state religion and it is the religion of celebrity worship)
Your characterization of the woman in breakout room 2 is absolutely disgusting. You are clearly projecting your own issues onto her and you should really be ashamed. What a sham of an article.
First – I DID NOT WRITE THIS ARTICLE. Second – I don’t know if I’m more annoyed over the fact that you attacked a total stranger who had nothing to do with this article (that would be me just in case I haven’t been clear) or if I’m annoyed over the idea that instead of discussing your concerns with the author in a calm and collected fashion, you just decided to make an assumption about what she was thinking and then you metaphorically crapped all over her.
Are you ALWAYS this rude to people you disagree with? Who is projecting now? I am personally disgusted over the tone of your response and your complete lack of manners.
Holy crud!
People like you are why I quit this (and other) sites.
The world is hard enough for anyone on the spectrum but to be attacked in a place that should be safe by people who should be more tolerant is completely unacceptable to me.
You may jolly well sod off!
Dear Elle,
I would like to apologize for telling you to sod off. I have not been active on this site for months and when your comment popped into my mailbox, I though tit was addressed to me and it made me really angry. I didn’t realize until after I responded that you were in fact writing to the author.
Having apologized, I still think that you were completely out of line. While your are certainly entitled to agree to disagree, being as rude as you were is completely unacceptable. I think you owe the author an apology.
You know, when my mom and I were on our way from my autism diagnosis, we talked a lot about the disconnect in communication between me as an autistic person, and allistic people like my mom. About how, to neurotypical people I seem awfully quiet or awkward, or if i can talk “normal” then that masking is exhausting to me. But when I am with other neurodivergent peers, our conversations are incredibly fufilling and flow so naturally.
I compared being in a social situation with neurotypicals to me is like being a zebra stuck in a flock of horses. It feels “off” and unnatural because i don’t communicate in the same way they do, even if we are superficially the same (obviously zebras and horses have wayyy more differences than humans of different neurotypes, but you get the point.)
I am a neuritypical daughter of an autistic mother. I am not outnumbered, there are two NT siblings and my dad is NT. My mom is high functioning, keeps a job, everyone says she’s nice, even if she doesn’t understand jokes or like film or music. But she took out a lot of her displeasure with the chaos if kids on me. When she felt it was my fault that the schedule was off she would start listing my deficiencies. She likes to list ways I could improve because she thinks it will help me learn to be happy. She also doesn’t have anh concept of audience, she will say private things to aquaintainces and told my whole class that I was a liar and shouldn’t be believed because she hated that I played make believe and talked to imaginary friends. She often comments on my appearance and the fact that I was not ab”popular kid”. She would tell me if I just lost ten pounds, I could have a boyfriend and be normal. What I now undersnd was her sharing life lessons in her own way, I was suicidal from the age of 10. I often didn’t speak in school because voicing different opinions often meant opening myself up to character assassination. I disagree with a Sunday school teacher and I am difficult and going to hell. That sort of thing. Even suicide attempts are brought up year later and I get scolded for being selfish and because I said once that it was because I wanted to leave the family.
I don’t like the books she enjoyed as a kid, or the toys or the clothes and so she would get frustrated and tell me I was wrong, that I wasn’t supposed to be like that, and then she would say I only spoke to her to make her angry, when I was just telling her about my day.
Displays of emotions were met with lectures and criticism, so I learned to only say I was happy or tired. Once I had a broken ankle and I had to walk on it for weeks because she was convinced I was just trying to get sympathy. Finally the school stepped in when I couldn’t walk to recess.
She didn’t meant it, but she was cruel. By the time I was 9, I understood other mother’s weren’t like this, but so much damage was done.
No one will like you if you dress like that. You need more friends. If you weren’t so far, you’d be pretty.
I struggle to keep up with friends because all my communication was clearly a conviction and annoyance. Something that disrupted the day.
I am now 40 and capable of being a healthy partner, but I still struggle to overcome the horrible things she said. She doesn’t even agree they are horrible, just good advice or her opinion. But that’s not fair to inflict that on a small child with no support system. My dad is amazing and did his best, but he has to work long hours and always believed her when she said I was being difficult on purpose. My sister had many of the same struggles, but she didn’t like when we were close so she made our lives harder when we seemed closer to eachother than her, so we lived very separately in the same house, until she ran away at 14.
No one should have children unless they are emotionally mature enough to do so. This may be harder for autistic people than NTs, but there’s just no way it isn’t emotional abuse. It’s the same for NTs that refuse to accept their child’s autism. It’s legal torture, but it is immoral. If I could go back in time to advise my parents, I would say don’t have children. Just because you have a biological urge, doesn’t mean it’s ok to follow. My dad is the best father I could hope for, and he made up for a lot. I used to beg him to leave my mom. I wish he had. It’s just irresponsible to raise children with someone who can be cruel and not mind because “that shouldn’t upset you”.
Please, if you have autism, and you want kids, adopt an older child that can understand you.
It sounds to me like your mom’s abuse wasn’t autism. It was moral failure. She behaved badly towards you. She made wrong decisions. Please don’t judge all people with autism based on your mom. Seriously.
“Moral failure.” Is that a diagnosis? Sounds like you need to come to grips with the fact that autism caused the mom to behave in abusive ways. It’s not passing judgement on all autistics, but it IS acknowledging an uncomfortable truth: a person’s autism can cause them to be crappy parents. There I said it. Stop denying it with flowery, toxic positivity b.s., saying things like “It was just a failure of both sides to understand each other.” This woman’s mother inflicted real damage, no matter if it was unintentional, the result is still the same: a childhood marked by emotional abuse and neglect. Don’t invalidate her perspective; she makes a valid point: not everyone should be a parent, in this case specifically autistic people who haven’t/aren’t willing to put in a TON of work on how to overcome their deficiencies (and YES, having difficulty reading/understanding emotions and responding appropriately is a DEFICIENCY. STOP trying to make autism out like it’s just “different,” and not a deficiency. Not saying autistic people don’t have other strengths, but trying to play it off as just different helps NO ONE.)
The deficiency was not in failing to read or understand emotions, it was in arrogant behaviour and deriving a sense of superiority regardless of (or perhaps even enjoying) the misery it caused. That is moral failure, regardless of neurotype. However blame, put downs, shaming, coercion, emotional immaturity… sounds more like narcissism to me. Autism can appear like narcissism, but typically lacks the manipulative and sadistic elements I read above. We also don’t know if the mother was clinically diagnosed or if Al S has personally diagnosed her as autistic in an attempt to rationalize their trauma. Neurotypical parents/family can be deliberately cruel and abusive, you only have to read the news to know this: what deficiency is responsible for that?
Neurotypical people can be deliberately cruel and abusive, yes; THAT is moral failure. But that is a straw man argument. Al S clearly states their mother is autistic, and also says “she didn’t mean it, but she was cruel.” You are denying what this person has clearly stated (that mom was autistic), and instead projecting your own interpretation of things (that mom was narcissistic) onto their experience. You said it yourself: autism can appear like narcissism. From the perspective of a NT child being raised in that situation, it doesn’t matter if she was narcissist or autistic: the result is still a parent who acted cruelly toward them, whether it was because they were incapable of understanding and reacting appropriately to the child (i.e: a DEFICIENCY in ability), or because they were manipulative and sadistic. An NT child can’t be expected to sort those two things out when they’re suffering being raised in that environment. Do you deny that it’s quite possible for an autistic person to be a crappy parent because of their inability to read, understand, and respond appropriately to an NY child?
This is a great article that brilliantly highlights an example of double empathy problem. Bookmarking. Additionally, I can tell that your grandad’s smiling in the first photo, although most neutotypical people probably won’t recognise it as it’s very atypical.
I couldnt finish it. Guesswork when you have no freaking idea whatso ever! I think its called MINDBLIND, you cannot see your own or others, yet you think you are a counselor of sorts. I know autistics that study metaphors and never grasp a word, this article is the same as that only worse. Its a great example of how truly mindblind and lacking in empathy … these deep thinkers are!
Thank you for this. I’m a child of a complicated upbringing where this is just one factor, but it helps me understand the situation much better. I actually struggle in the work environment due to the direct communication style I was raised with and my additional complexity of having ADD. My brother and mother both have tuberous sclerosis which has caused them to have ASD (in my opinion).
I am 99% sure my dad is on the spectrum but undiagnosed. I’m in my mid 20s and NT as far as I know, but it was definitely traumatic as a child being exposed to his meltdowns, sensory issues, mindblindness, egocentrism/paranoia. In some ways he is mentally and emotionally stuck at the level of a young child. Also I think he suffered from middle age autism burnout because after that age he refused to get a job and has become increasingly reclusive. My mum was the main breadwinner and did majority of the childrearing, our family was more like single mother dynamic. I realised the other day that I have never been able to have a real back and forth conversation with him. I am trying to restart communication and rebuild a relationship via letter writing (it’s easier for him to communicate that way) but it’s very difficult. There are almost no resources for people in our situation except for a tiny handful of articles and private FB groups.
I totally relate- can you please share those FB groups or articles? I cant find anything
Hi M, trying to respond to you, I think my comments get removed because I tried to post links. If you search for NT Adult Children of AS Parents on facebook the group should appear.
If you have an email address or any other way of contact I’ll post you over some links. There’s several from The Neurotypical DOT com
If you have an email address or other way to get in contact let me know and I’ll send you those links. Best of luck!
Oswald, I was diagnosed at 42. My mom acknowledged that my Dad is likely autistic 4 years later. It takes time to see it.
Thanks Raphael, I agree that it takes time to see it but in many ways it is too late. I have a better understanding of my dads behaviour now and our family dynamic. I really needed my dad as a child but I experienced trauma and neglect stemming from his autistic spectrum hypersensitivity, egocentrism/paranoia and mind-blindedness/inability to relate emotionally or communicate with me. I hope to salvage some kind of relationship with him as an adult, but in the meantime I have to move on and make my own way in the world, I cannot wait around for him to change or realise his own condition.
Hi, I’m in the same boat as you: 99% certain my dad is on the spectrum, I’m NT (in my 40s). Same traumatic memories of dad’s meltdowns, mindblindness, egocentric. My dad also quit working in late middle age, when I was just starting high school, which meant he was home all the time and so we kids (all 4 of us) got to experience even more of his temper, frustrations, rants, and rigid ways of seeing and doing things. You are completely correct that there are almost no resources for people in our situation. When I first started coming to the realization that my dad is most likely on the spectrum a few years ago and searched the internet for even just basic information, all I found was an onslaught of pro-autism parent sites and articles, touting how autistics can be great parents too! (often with an underlying shaming tone at anyone who would have any doubt as to what wonderful parents they can be).
Thank you for this wonderful article! I have some thoughts and questions that I would super appreciate it if you are open to considering. To help frame where I am coming from, I am neurodivergent but do not experience autism. I have ADHD (not diagnosed until I was 38), Complex PTSD, and deal with severe and long periods of depression. I was bullied a lot as a kid and had a lot of dangerous and difficult things happen in part because of my differences. I also had a father who was moody and unpredictable, who was prone to angry outbursts and grabbing me and shouting at me to be quiet in very aggressive ways. His needs dominated our house and we all walked on eggshells around him all the time, and my mom did most of the parenting work and housework and built a “screaming room” in the basement where we were allowed to make noise an dmy father wouldnt come and shake us and yell at us for doing things that many children do when they play. When he was writing his newspaper articles, if we needed to ask him questions or anything, we risked getting snapped and yelled at. There were times where my young sister was in danger (like hanging on the wrong side of an escalator about to fall off about 30 feet) where I would ask for his help but he would angrily tell me not to interrupt him because he was talking. Other times, he would just focus on his reading and my sister and I ended up in the hospital emergency room a couple times because we were playing with sharp tools and he was too focused on things besides his parenting. Being a sensitive kid like me, this was especially hard. Some of my trauma shows up as needing to be hyper-vigilant and I have spent years and years in therapy healing from it. Only this week did my step sister, who is in school to become a therapist, finalyl put the pieces together that my father likely is high-functioning ASD. I know his life has been super hard because of struggling with being so different throughout his life. I have been defending him against others without knowing the cause of his difference my whole life. However, there are two things that I felt a little hurt by in your article here that touch on this experience. One is that, just because that woman is not autistic, does not mean you know she is neuro-typical, unless you specifically asked her. She also may have developed complex PSTD as a result of her experiences, which would explain some of her emotional response. I think without investigation into this, and naming it specifically in your article, you may risk some significant assumptions about her brain and the context of your conversation. That being said, perhaps she was neuotypical and had not acquired any mental health issues from her difficult childhood. In that case, by invalidating her experience and desire for information as being privileged, another point feels missed. In your (acknowledged highly problematic) correlation between race and autistic experience, she is not simply the privileged but she is someene living in a household of people who are oppressed and experiencing some of their discrimination and able-ism etc indirectly. She is PART of the community, even if not the person on the front line. Making her separate deletes an important second-ring of people who are impacted and opportunities for solidarity. Also, as in the case of my experience, there are impacts of living with difference sometimes that arent just about misunderstanding. In my relationships, there are things I have gotten into big fights with my partners about that are due to my ADHD. Sometimes, in my fight to be understood, I risk trying to gloss over the impacts of some of my behaviors on others. Yes, I need more support, for them to educate themselves about my difference, and more compassion. But also when I leave the stove on and the kitchen is filled with smoke (again), they are allowed to say the fear impacts their life. Having to wait around for me when Im late, or experience my emotional disregulation and big feelings that can be explosive and sudden, does have an impact. This is a “both/ and” not an “either/or” and I believe the same is true with people with ASD or any other difference. I have been looking all night for a support group for people raised with parents with undiagnosed ASD symptoms because it is a really specific experience and I really need help. And there is not anything out there to help. Only info about how to help the person with ASD. It felt a little misleading and hurtful to have the only article I found referencing someone as being upset and trying to find resources as being privileged and misinformed. She may very well have been both, but I guess after writing this way too long (ADHD trait!) post here, I just want you to know that some of us have a more complex relationship to the subject of having a parent with ASD and we need tools to not only help them, but also to understand our own experiences and get support. Thank you for considering my opinion. <3
Yes. This is exactly what I had been thinking. I should also say, in a family of generations of neurodiverse people of which i am i minority NT, a very high functioning successful person, such as the author, is not the norm. Nor are swathes of positive jolly business meetings with like minded fellows. As someone who is supporting 3 generations of ND individuals, school is very difficult for them and me. Work is very challenging for my successful partner and my parents are increasingly isolated due to their fixed way of being and tendency to offend the wider population. My challenges living in this environment are complex and stressful and without bias, to dismiss that woman’s reality as privelege was cruel. The prejudice in this article resembles the ones I so hate written by NT people.
Wow. Reading your article transported me to all the times I (an NT woman) have sat with my dad (ND) and tried to have a conversation about something I was struggling with, only to have him hijack the conversation and go off on some experience that he had had that was only vaguely related to my issue, leaving me feel completely unheard and invalidated. Most of the time the conversation wouldn’t even return to the thing I needed help with, or he would offer up (only after indulging in listening to his tangential rant for quite some time, of course) some completely useless or bad advice. Just like when your article about “having autistic parents when you are NT” went off on a self-indulgent discussion of how great-but-misunderstood your grandfather was for the bulk of it. At least you returned to the topic at hand: the pain and very real neglect that NT woman experienced. But still bad advice, because you tried to make some weird statement about privilege (which is basically missing the point, not to mention tone-deaf), and then attempted to deny her reality that her autistic parents were, in fact, unable to show appropriate affection to her BECAUSE of their autism.