I Was Like Your Autistic Kid.
Note: This post was first published on my original blog - Celebration Generation - on November 16, 2020. It was transferred over to this blog - existing comments and all - on 4/2/2021
Content Warning: This post discusses my experience with both being an autistic kid, and dealing with “autism parents” as an adult. As such, this post contains some content that may be disturbing or triggering for some, including frank discussion of bullying and child abuse.
Yesterday, I shared this post on my personal Facebook.
While all of my friends are decent people - I have no warrior parents friended - I do still like to share educational / “eye opening” posts about autism, and the kinds of things that autistics face.
In this case, it was the pathologization of autistic play. The idea that there’s a right and wrong way to play, and that - of course - autistic play is “wrong”.
While I don’t recall my mother taking issue with my play (my sister was another story!), I was absolutely that kid. The “wrong”, autistic way of play is how I played, especially with regards to grouping, lining up, and ordering of colours (Lego!).
To this day - I still see nothing wrong with it.
You’re Not Like My Kid!
This morning, I woke up thinking about that post. In particular, I was thinking about the idea of autistic kids, autistic adults, and the idea that we’re "not like" autistic kids.
As almost anyone who’s openly autistic on a public-facing social media account will tell you... parents of autistic kids LOVE to say “you’re not like my kid!” when we advocate for autistic rights.
It’s a common tactic to shut us down and somehow disqualify us from having an opinion on autistic rights.
... and it’s utterly ridiculous. I am over 40. Of course I’m not like your kid.
When they read of child abuse in the news, do they disqualify themselves from having an opinion on it, based on the fact that they are also adults, and “not like that kid”?
I doubt it, as that would take a level of self-awareness (and the extension of empathy towards autistics) that most of them don’t seem capable of.
.... Except, We WERE Like Your Kid
Like most autistic adults I know, I empathize with the autistic children of these people. In a lot of our cases, it’s because we WERE those children.
We may not be like your children now, as adults... but we absolutely see ourselves in the “monster” kids that you describe... and for a lot of us, we see our parents in these “warrior” parents.
When we see parents of autistic kids shaming and belittling their kids, publicly displaying such contempt and resentment for their kids?
A lot of us clearly remember being on the receiving end of it.
The parents engaging in such behaviours - and harassing autistics online - seem to think that if we can manage a Twitter account, or speaking, living on our own, being in a relationship, etc ... that somehow disqualifies us from having a view on autism - or experience in the same.
They like to make comments about how autistic adults online are somehow “faking” being autistic, and that we’re just “quirky”. Very, very quick to go to the “quirky, not ACTUALLY autistic” accusation.
So, today I’d like to post very openly and honestly about my childhood as an autistic kid.
A Bit of Context
If you’re new around here, let me take a moment to introduce myself, so you have a bit more context as to where I’m coming from.
- I’m an autistic woman in my early 40s.
- I’ve been happily married for 14 years.
- I’ve being self employed most of my life, and have had a wild career. I’ve achieved acclaim in a few different fields, including wedding / formal wear design, spandex costuming, cake decorating, and as a cookbook author.
- I’ve written 6 sewing manuals, 7 cookbooks, and a tornado memoir.
- I mask well, and can usually “pass” for allistic.
Due to all of this, “Autism parents” love to discount me as “not autistic enough”. The idea is that if I can write, get married, work for myself ... I have no right to speak as an autistic.
However:
I was formally diagnosed with Aspergers (at the time, anyway. Now it’s just autism) at age 15-16. I suspect that I actually had an earlier DX as well, that was withheld from me.
I was routinely taken from class in elementary school for some sort of counselling /therapy that was definitely behavioural in nature, and vaguely resembled light (maybe early?) ABA.
I was told at the time that it was due to my parent’s divorce, and I accepted that at the time. However, looking back on it... that doesn’t make a lot of sense. My little sister had a much harder time with it and was not subjected to this, and - again - it was definitely behavioural / relating to my peers in nature.
Additionally, I would like to point out that receiving an autism diagnosis as a teen girl - in the mid 90s - was rare. For as well as I “pass” now, apparently that was NOT always the case, diagnostically.
They did not hand out autism diagnosis for “quirky”, after all.
Why I’d Like to Discuss My Autistic Childhood
It’s my hope that delving into all the ways that - yes - I CAN relate to autistic kids of today, maybe it’ll help some people understand.
Maybe it’ll click for someone that autistic adults do actually know what we’re talking about.
Maybe it’ll show people that their autistic kid isn’t “doomed” to whatever bereft hell life the parent is imagining for them.
Or maybe it’ll serve as a warning to people who don’t consider the words and actions they use on their autistic kids.
Contrary to popular belief... we do see and hear what’s going on. We see, hear, and feel the resentment.
Also... We DO remember, and sometimes we grow up to have a platform 🙂
There’s a song in Les Miserables - “Little People” that always spoke to me. It came to mind just now:
“And little people know
When little people fight
We may look like little weaklings
But we've got some bite
So never kick a dog
Because he's just a pup
We'll fight like twenty armies
And we won’t give up
So you'd better run for cover
When the pup grows up!”
Not that “I shouldn’t be awful to my autistic kid in case they find their voice and blog about it some day” should be THE deterrent from mistreating autistic kids, mind you.
The fact that the kid is a human, a living being, etc should be enough.
All too often though, it is not.
ANYWAY.
How I WAS Like Your Autistic Kid
Over the years, I’ve made note of all the things that people stress out about over their autistic kids.
SO often, I end up relating to the kid, across many facets of the autism things that parents complain about... or even just acknowledge.
Language and Processing
Hyperlexia
As a kid, I always read - and had a vocabulary - far beyond my age group. The “Age appropriate” books in any classroom were always super boring, and I felt like I was being made to read “baby” books.
- I was reading Star Trek Novels in grade 4 (and getting ridiculed for it).
- In grade 3 or 4, a standardized spelling test determined that I was reading and spelling at at LEAST grade 12 level. It was the highest level test they had, so we don’t actually know what level reading I was at.
My teacher at the time used it as some kind of twisted “motivation” for the other kids, holding up my results as something they should strive for.
... it made life HELL for me.
As a bit of an aside, I’ve always looked at that incident with bewilderment. While Autistics are the ones constantly accused of inappropriate behaviour, not reading social situations, etc... what was SHE thinking?
She was an adult, a teacher... what part of using my test results (A wild anomaly!) to shame kids *who were mostly performing at their expected grade level* was socially acceptable?
Aside from reading, my verbal skills were also advanced at a young age.
My great aunt once told me a story about how we were in a canoe when I was 2. Someone looked over the side, and I piped up with "Don't be afraid, it's only your reflection!"
Apparently I shocked everyone, and my aunt still has no idea how I even knew the word "Reflection", much less how to pronounce it at that age. She still laughs about how "Serious" I sounded.
I don't remember it - I was 2 - but it's one of many times I've been told about how I sounded like a "little adult" at such a young age.
Math Skills
While my reading and speaking skills were great, the way I processed information actually held me back a bit when it came to math... in a really weird way.
As a kid, I could look at any of those logic type word problems - which they’d use in algebra class - and just figure the answer out in my head.
“Joe is ___ years older than Bob, who is twice the age of ___...." - That kind of thing.
I could look at these questions - and other algebra problems - and the answer would just come to me. Sometimes I’d think it out, but usually it would just kind of be there, if that makes sense.
The thing is, the way they asked us to show work? To this day, I don’t understand it. They’d ask for tables, factor trees, whatever... I couldn’t wrap my head around any of it.
So I’d just write the answer.
This one time in grade 9, I got 26% (!!!!!!!!) on a math test, *AND* an accusation of cheating... because I only wrote my answers.
I could have been in a lot of trouble, but I took it to the principal, who had my back. Luckily, I was the only person in the whole grade to get the whole thing right. Who was I supposed to have cheated off?
I was never going to be a mathematician or physicist - and the idea that we’re all good at math is harmful stereotype in the community - but a lot of the time, we DO process information differently.
In my case, it was both a boon and a detriment. 26%!!!!
Social “Skills”
The comments made about autistic social skills - or “lack thereof” - usually hit home for me.
Eye Contact
Hated eye contact. Still do. I’ll never understand why there is such an obsession with eye contact, in our culture.
It’s not a universal thing for humans - many cultures also look at eye contact the way that autistics do. It’s both an intimacy thing and an intimidation thing.
In many cultures - autism, internationally, etc - eye contact is seen as an aggressive thing. This is true in the animal kingdom (which we DO belong to!) - as well.
So why is it that it’s autistics - rather than the subset of humans (North American allistics, for the most part) who insist on eye contact - who are “broken”?
Dealing with Other Kids
Growing up, the other kids KNEW I was different, and never let me forget it.
For my part, there were many times where I felt like I’d basically been dropped off on the wrong planet. I looked like the other kids, I sounded (mostly) like the other kids...
... but it always felt like I was wearing an uncomfortable skin - like a disguise - trying to fit in. I’d be speaking the same language, and somehow not be understood.
Kids found me weird, I had a really difficult time making friends. To be honest, I didn’t really have friends, looking back.
There were kids that were halfway decent to me - and I thought they were my friends at the time - but looking back, I think it was just the contrast of “mostly left me alone” vs “bullied, harassed, and assaulted me”.
I guess that was my black and white thinking - people were either friend or foe. The foes made themselves obvious, usually... and anyone else just got slotted to “friend”. There.... weren’t that many,
I was routinely called “Rain Man” and “R*tarded”.
School Projects
I wasn’t great at team work, as it always felt like we were on completely different pages, speaking different languages (not literally!), etc.
I HATED group projects. Not only was it awful to have to work so closely with the other kids, they would routinely be unreliable, refuse to follow the teacher’s instructions, goof off, have terrible organization skills, etc.
By high school, I was very much about the “sit down, shut up, and just let me do it”. I didn’t really get much/any blow back on it, either.
As an adult, I’ve found that experience to be pretty common among my autistic friends. We may have been “weird” in school, but for the most part... others were - and still are - quick to want to benefit from our other skills.
As an aside, that concept is something I think about often, as I see people taking to social media to attack autistics, to carry on about “fighting autism”, talk about us needing a “cure”, etc.
Computers, internet, social media... none of that would be around, if not for autistic minds. The fact that people benefit from our brains *while attacking those brains* is... wild.
NOT Dealing with Other Kids
In the vast majority of my experience, kids were loud, obnoxious, and - a lot of the time - straight up abusive. So, I mostly tried to avoid them:
The Library
I hated recess, as that’s when the harassment and abuse would be the most out of control. So, I would find any excuse I could to NOT do recess.
My absolute favourite avoidance technique was hiding out in the library. The school librarian was kind, and would let me volunteer with “helping” her out.
Let me tell you, sorting and shelving books was my idea of a good time... not the “chore” it was made out to be.
I loved the Dewey Decimal system, I loved sorting through titles, memorizing batches of identifiers, seeing how efficient I could be with pre-sorting them.
I’d race myself to see how fast I could get a stack of books categorized and shelved. You know, actual fun... not at ALL like recess!
The Back of the Yard
Sometimes, I wasn’t allowed to hide in the library. Maybe there was an event, or the librarian was sick, etc. On those occasions, I’d camp out at the back of the school yard.
There was a sidewalk that divided the back of the school fields from the bit of land that bordered the houses just beyond the field, and we weren’t supposed to go beyond the sidewalk.
... but that area was PEACE. I routinely broke that rule, but was generally left alone over it.
In the spring and fall, I’d just enjoy the peace and quiet among the trees and leaves. I’d enjoy the colours, the sound of the wind, and just generally relax. It was nice.
In the winter, snow drifts would form on the school side of the residential fencing, usually with a small bit of open area between the drift and the fence.
I’d make sort of an open fort back there, carving out a seating area to just chill. Sometimes, I’d be so peaceful and relaxed back there, I wouldn’t hear the bell.
Oh well. It was a great escape for me!
Parents like to pathologize their autistic kids for being loners, but honestly... I really loved being alone. It was peaceful and quiet and lovely.
Wandering
I’d written a whole post on the subject of my experience with autistic wandering / “eloping” - "Running Away: Autism & Elopement" on “Thinking Person’s Guide to Autism” - but I’ll mention it here, too.
I did love to wander, for the same reasons I loved the back of the school yard. It was peaceful, quiet, and honestly... was the only real freedom I felt.
I would get on my bike - I’d say this was mostly between ages 8-12, but ESPECIALLY when I was 11-12 - and just bike. I’d take random turns, and basically try to get myself lost.
That probably sounds weird, but I liked the challenge of being “lost” and finding my way back. It was never stressful, it was just like... a physical way to engage in problem solving.
No tests, no marks, sure... but also no other people. It was just a bit of fun!
That said, I guess I did at least some degree of the other kind of “autistic wandering”, I remember visiting a museum in Ottawa while on vacation, and ending up getting dragged along with a school group.
My grandfather eventually found me, and had to convince the teachers that I was not, in fact, with their group.
Skipping School
As I got older, I started skipping school.
Junior high, especially, was incredibly difficult for me. The school I went to was filled with feral kids, and the abuse I was subjected to was *off the charts*. A few highlights:
- Getting shoved down a flight of stairs
- Being followed home and hit over the head from behind, with a large chunk of tree
- Being subjected to homophobia and gay bashing... as a straight person.
Robert McCall - a Canadian figure skater - had recently died of AIDS, and somehow that meant that ALL figure skaters were gay and had AIDS. They were relentless with the harassment, verbal abuse, slurs, and physical assaults.
The thing is, I don’t know any of my fellow skaters that went through the same thing. I don’t really think it was about Rob McCall, and I don’t even think they necessarily thought I was gay and had AIDS. I think it was just one other way they could target me, for being different.
Anyway, Jr High was miserable, so I would skip whenever I could... usually to go to the rink, funny enough!
By high school, I was mercifully allowed to transfer to a different section of the school district, and things were so much better.
I was still “weird”, but the kids were much nicer, and weird seemed far more acceptable. I was pretty set in my escapist ways, though. In grade 10 and 12, I spent less time AT school, than I did skipping!
For the most part, my teachers were understanding. As long as I did my reading and homework, and showed up for the important tests... they pretty much left me alone.
Kids vs Parents
Actually, on the subject of the rink...
I always found the parents more human, interesting, easier to relate to, etc than the kids my age.
I think it was less that I had “no” social skills, and more that I really *could not* relate to my peers at all. I’d hang out with parents often, no problem.
I remember Veronica, the mom of one of the skaters who was a little older than I was. We’d go get meals together and watch her daughter - Tara - skate, from the lounge above. She’d tell me all of the interpersonal intrigue going on in the world of figure skating at the competitive levels above my own.
That said, I did have a few friends - my age or slightly older - at the rink: the nerds.
One friend that was usually on my session was a weird loner like me. She went into fashion - merchandising, I think - and I’m convinced that she “Played for the A Team” herself, looking back.
One wanted to go into nuclear medicine. I had SUCH a crush on him, and we’re still friends today!
One ended up as a highly regarded surgeon. We were friends as adults, for awhile... until he want super right wing. I’m still disappointed.
Autistic vs Non Autistic Social Skills
I’m not sure where to comment on this - it’s a bit of an aside - so this will do, I guess.
People are very quick to pathologize autistics for our “lack of social skills” when it comes to our ability to relate to allistics, yet the same is not pathologized, the other way around.
Why is it “lack of social skills” that I was unable to relate to my peers, but perfectly acceptable that they were unable to relate to me?
There is a world of difference between my “I don’t really fit in with these people”, and their “This person is different, and MUST BE HARASSED AND RIDICULED!” ways of interpersonal interaction.
How much better would the world be right now, if the “Must abuse anyone different!” thing was the one pathologized?
Ableism, racism, homophobia, transphobia, xenophobia, Islamophobia, etc... all things that could definitely stand to be pathologized, IMHO.
The thing is, Autistics generally don’t have much trouble relating to and socializing with other autistics, whether it be as kids, when dating, or in the workplace.
If anything, we have LESS trouble - and less drama - among our own, than allistics do among THEIR own.
... so who’s REALLY lacking in social skills?
We’re expected to bend over backwards to understand allistics, communicate in their preferred way - both verbally and in terms of body language - etc. The same is not generally reciprocated, nor is it a widespread expectation.
I don’t know, I just see the “social skills in our neurotype” skills being more or less the same - or BETTER - on the autistic side, while also expecting autistics to basically be bilingual in our social skills... with no such expectation or demand of allistics.
From where I sit... does that not make us MORE socially skilled? If not inherently, at least by design/practice?
As Another Aside...
When I was growing up, I did so without the benefit of being able to relate to anyone in the media, either.
Most kids would relate to some character in a movie, sitcom, whatever. Literally the only character on TV that I could relate to was an alien.
While the vast majority of autistic representation today is some degree of problematic, there was NONE back then.
I had Spock, and that was it.
That’s... a weird way to grow up.
Anyway, enough about the social skills issues, let’s move on:
Attention, Attention-Adjacent Issues
Being “Distracted” in Class
I doodled in class, I’m sure it looked like I was completely not present.
Whole pages full of geometric designs, for the most part - all the way through my school years.
There was a period in grade 3 or so where washable markers were a thing... and I’d draw on my socks, while wearing them. Usually fruit designs, sometimes geometric.
I was ridiculed mercilessly for it, and some teachers would get mad for me “not paying attention”... but I heard - and processed - everything they said.
As a teen skater, my coach would get SO mad at me for bringing a walkman out on figures sessions. I NEEDED to listen to music - dance music - in order to focus on the monotonous task of drawing figure 8s out on the ice.
I literally could not focus without it.
Focus
The demand that children focus on what the teacher is saying, undivided attention, eyes forward, etc... seems a tad hypocritical, TBH.
As adults, no one bats an eye at the idea of needing music or TV on in the background, in order to be able to get work done.
Many, many allistic people have a hard time getting work done in a silent environment, and would agree that that additional sensory input actually helps them concentrate.
Why is it so easy to accept that one can pay attention to driving with music playing, or have an easier time doing computer based work with a TV show or music on in the background... but not understand that drawing helps an autistic with learning in class?
If you can do work and watch a TV show, then - TBH - you have no standing for not understanding why we doodle - or read! - in class. It really does help us out.
“Destroying” School Supplies.
“Destroying” pens, binders, and paperclips was also a THING for me, alongside the doodling. Paperclips would be bent into completely unusable designs, or used to perforate my binders.
This was not only a focus thing, it was also sensory - the “pop” that would happen once a paperclip would stretch - and break through - the plastic binder cover was satisfying.
It was never about “destroying” something. It was about both the need for the “distraction” to help me focus, and about sensory seeking. More on that in a bit.
Special Interests
Virology
When I was really, REALLY young, I had a book that ended up becoming the genesis of a lifelong autistic special interest for me.
It was “The Value of Believing In Yourself” - the story of Louis Pasteur... and it spawned my interest in virology.
I wanted to be a virologist (got sidetracked in high school!), I found the whole science fascinating. Still do.
If you think your kid is weird because they’re super interested in birds, or trains, or ... whatever? I was a young girl obsessed with viruses.
Never in a germ-phobe way, but in a ... “Reading Andromeda Strain in grade 4 and getting mad about how inconsistent the terminology and science was” kind of way.
... and there’s nothing wrong with that.
The Nylons
When my little sister had New Kids on the Block posters, dolls, a sleeping bag, etc? I was ALL about The Nylons.
I would buy their cassettes, beg my grandpa to take me to the library downtown so I could print old articles off microfiche to have “posters” on my walls, too.
I even made “earrings” (way too big and heavy to wear) out of FIMO clay, based on the cover art from the “One Size Fits All” album.
Was I looked at as a weird kid for that special interest? Yes.
DO I still love The Nylons to this day? YES.
Triffids
As a kid, no movie ever gripped my attention like the Day of the Triffids mini series. I don’t actually know what it was about it that made it stand out from every other movie in that genre, but I was OBSESSED.
I made little Triffid sculptures and “jewelry” out of coloured paper. Really twee, “Kawaii” versions of Triffids, but Triffids nonetheless.
If your autistic kid enjoys something - really, seriously enjoys something ... let them. Let them be weird, let them enjoy things.
You don’t need to understand why they’re obsessed with it, for it to be OK. Hell, half the time we can’t even explain why we are/were obsessed with something.
Autistic joy is a beautiful thing to behold - enjoy it, don’t squelch it.
Autistic Sensory Issues
Like many autistics, I was - and still am - both sensory seeking, and sensory sensitive. A few examples:
Sucking Clothing
I sucked my shirt and jacket collars all the way through at least Jr high. My lower lip and chin were frequently raw and “wind burnt” as a result.
I’m assuming it was mostly a nervous stim, as it definitely went away as my stressors were removed (home life, the awful schools I went to). Pretty sure I had stopped by high school... and my high school experience was actually really good.
Thumb Sucking
As a kid, my thumb sucking was a HUGE issue for my mother, which led her to some frankly bizarre intervention attempts.
At age 9 or 10, she tried to bribe me with money to stop. It was something like $50 or $100 to go a month without. I ... did not. LOL.
Then, there was the onion issue, which was a HUGE miscalculation on her part.
She decided to try and use an aversive on me, to extinguish that particular stim: She pureed onions and would make me soak my thumb in it.
The joke was on her, in the end: I liked it.
Looking back on it now, though: She would puree onions and keep it in a little plastic (maybe rubber?) Tupperware type canister in the cupboard.
... I think it was raw, and she was very specifically forcing a recently sucked-on thumb into that container of onion. I have no idea how long she’d keep it in the cupboard for, but.... yikes.
She was a great cook, but apparently not so big on the food safety. (Though maybe that was by design?)
Mini Liquor Bottles
Here’s a weird stim / sensory seeking behaviour for you: I LOVED collecting used mini liquor bottles. This would have been before the age of 11.
I’d be “rewarded” with them, sometimes, and I’d keep them in a little empty “Pot of Gold” chocolates box. Why?
Because I loved the smell of them. I’d uncap and sniff them every once in a while, usually when upset. I guess it was a really janky form of aromatherapy?
I totally realize that “8-10 year old sniffing old booze bottles” is probably TOTALLY weird to most reading this, I get it.
I had no desire to *drink* them, though - it was more like perfume, but without the headaches that most perfumes would give me. Peach Schnapps and Creme de Menthe were my favourites.
Scent-Sensory Seeking
To this day, I don’t like the VAST majority of perfumes out there. I need things to be single note, and an identifiable smell - usually a fruit.
I’ve always loved The Body Shop for their - now discontinued - perfume oils. Satsuma was my JAM (and regular readers here will not be shocked by that).
These days, when I wear perfumes, it’s generally the Demeter line of fragrances.. Lemon Meringue and Lychee are my usual go-tos.
Figure Skating
I LOVED figure skating. Not only was it a physical and mental escape from my hellish home and school lives, it just felt good.
The smell of the rink was intoxicating. It’s not even necessarily a GOOD smell - it’s pretty neutral, really - but it’s physically electrifying.
I had to go many years without even entering a rink, after my car accident. Then one day, my husband and I went to a sports grill that happened to be located at an arena.
Years and years without being exposed to that smell - and I’d never been in that particular rink before - meant nothing. I had an immediate, full-body sensory bliss-out reaction to it.
Beyond that, there’s always the “wind” feeling in the hair, the sound of the blades on the ice, and spinning. I LOVE spinning.
You don’t like your kid spinning in the living room? Stick them in figure skating. Seriously, it’s a fantastically stimmy sport.
Chalk
So, enough about sensory seeking, let me talk about CHALK. UGH.
Chalk was a huge bane to my existence all through school. Even sitting here thinking about what to say, I can *feel* what it was like to touch chalk, even though it’s literally been decades since I touched any. UGH.
When I touch chalk - and this has always been the case - it feels like it sucks all the moisture from my hand. The feeling is INCREDIBLY unpleasant, and sort of crawls up my hand from there.
As a kid, I would be in TEARS when being forced to use chalk. I’m sure I looked like I was being dramatic or “a brat”, but it really was - and is - one of the most unpleasant sensations I can ever remember having.
Some of my nicer teachers would offer to let me use their chalk - a piece of chalk in a metal holder - but the handle was usually covered in chalk dust itself, and just as bad.
I’ve stabbed myself with a skate blade, broken bones, etc... not as unpleasant as chalk. Needles? Whatever. I’m sitting here coming up with all kinds of really gross examples of sensory sensations, and haven’t yet come up with one that would be worse than touching chalk.
Whenever I see movies with someone high on drugs imagining bugs crawling on them, it makes me think of touching chalk. SO gross.
Sensory Aversion
I’m not alone in this, by any means... but it’s also not a universal thing. Many autistics think “gross” is exclusively about wet/slimey textures, not ... chalk, terra cotta, the back side of un-set tiles, etc.
Your kid might also have weird sensory aversions. You might not understand them, *I* might not understand them... but that doesn’t make it any less real.
Sometimes our bodies process sensory stimulus in a way that’s completely unlike anything you may know, have experienced, or even heard of.
Behaviour
Toe Walking
Like many, I walked up on my toes, all the time. I had no idea that was an autistic thing until fairly recently.
Can’t really give any explanation for why we do it, other than “it just feels right”.
“Tantrums”
I was seen as an incredibly volatile kid. Screaming meltdowns (or “tantrums”, if you were to ask my “mother”), kicking or punching walls, etc.
At the time, I wasn’t in a position to be able to explain why I did these things - they were knee jerk reactions to whatever was happening at the time.
The thing is, an autistic kid who is living a peaceful existence... is not a volatile kid.
An autistic kid that is not being exposed to stressors beyond their limits doesn’t experience meltdowns, hit, punch walls, etc.
When a person talks of their “monster” autistic kid, describes meltdowns, punched walls, etc?
My empathy is with the kid. I don’t know what exactly that kid is being exposed to, but it’s obviously something far beyond what they’re able to deal with.
I will forever be grateful that I grew up before the rise of mommy blogs, warrior parents, and the like.
I’m sure my own mother would have been quick to tell everyone about how I kicked a large hole in the wall in our front entry.
... and I’m sure she’d be far less quick to add the context: I kicked the hole in the wall immediately after my stepfather threw me down that light of stairs.
More on that in a bit.
Meltdowns
The thing is, we don’t choose to have meltdowns. We don’t have them “for fun” - they’re NOT fun - or to “manipulate” people.
We have them when we’ve reached out limit of stressors (physical, internal, sensory, whatever), and physically *cannot deal* with what’s happening.
When an autistic kid is having a meltdown, or getting violent - something is not being addressed.
Whether they’re straight up being abused or not, something is amiss. It can be as simple and “innocent” as the smell of a floor cleaner getting to us.
Maybe it’s a food intolerance or allergy causing discomfort.
Maybe it’s a high pitched noise that your allistic ears can’t hear, but is driving the autistic BATTY.
We may try and endure it, but if it’s a stressor... it can definitely build up and cause a meltdown.
When I hear that a kid is often having meltdowns, it’s a huge red flag that their needs, communication, etc is being ignored. That the parent is more focused on centering themselves as a “victim” of their kid’s autism, than finding out what is harming or distressing their kid.
Empathy
Empathy is a weird thing when it comes to autism.
We’re accused of lacking it. This is usually projection, coming from people who are utterly incapable of feeling even the slightest bit of empathy for autistic people.
In reality, we tend to have more than enough /TOO MUCH empathy. This can make life rough for any autistic - child or adult. As a few examples from my history:
The Candy Incident
One of my earliest childhood memories is one that disturbs me to this day.
I was in kindergarten, and some kid was getting beaten up for some candy. I can picture exactly where I was, where they were, etc... ~ 35 years later.
I can't even tell you how disturbed I was by it. It was almost.. a consuming sort of instant depression. Absolute despair.
The idea that someone would have so little respect for another person, to do THAT... and for something as stupid and meaningless as CANDY.
I was 5 or 6, and already giving up on humans, if that makes any sense.
The teacher could NOT understand why I was so upset. Their view was that *I* didn’t get beaten up, so I had no reason to be upset.
... WHO was the one lacking empathy?
Secondhand Embarrassment, Etc
Some TV shows and movies were almost impossible to watch, because I would feel SO bad for the characters in it.
If they were humiliated, or ridiculed, etc... it was a bit much to take. Even for fictional characters - empathy is a wild thing.
It’s not something I’ve grown out of, either. We’ve recently started watching “Mohawk Girls”, and it’s a fantastic show.
It’s also a really difficult watch at times - I feel like we’re watching the writer actually bully Caitlyn - a fictional character. The show is so awful to the character (Who is a precious cinnamon roll!), that it gets incredibly uncomfortable to watch.
If your kid gets upset when people are bullied, laughed at, picked on, or injured on TV? That’s empathy.
The “Psychic” Thing
This one’s a bit embarrassing, For a good part of my childhood - especially tween/early teen years, my grandmother and other people around me were convinced that I was psychic, and pretty much had me convinced of the same.
Yes, I was pretty accurate at knowing what people close to me were thinking (though I definitely put that down to pattern observation!)... but it was FEELING what others feel, that really stood out.
I had a really difficult time with things like taking a crowded bus, especially at stress times like rush hour.
I don’t have a good way of describing it without using “woo” language - when there’s a bunch of people in an enclosed area, their stresses ARE a kind of “energy” in the air, and it was absolutely overwhelming for me.
Being next to *one* person who’s stressed out, grieving, etc can be overwhelming. It’s like their emotion is a sentient THING that can reach out and grab you. It’s disconcerting.
So when you’re stressed out and your autistic kid starts getting upset? That is ALSO empathy.
I Remember
I really should wrap this up, as it’s getting long.
As you can probably tell, I remember a LOT about my childhood. Plenty of my experiences as an autistic kid are pretty universal, and can be related to by any number of autistics, or parents looking to understand their autistic kid, which is great.
... but I also remember the bad stuff.
- The stairs incident.
- Being locked up in the unfinished basement and told that there are “brown recluse spiders that like to bite little girls”. (THAT one led to a wicked case of arachnophobia for years!)
- Being made to eat off the floor like a dog, while being told that I didn’t deserve to eat at the table with the rest of the family.
- My “mother” grabbing my shoulders and sing-yelling “YOU’RE insane, got no BRAIN” in my face, when Cyprus Hill played on the radio. Still hate that song, even if the actual lyrics are marginally less gross than her version.
- Being resented.
- Being expected to apologize for being different.
Hopefully, this post - which was incredibly difficult to write - will give some insight into the fact that no matter how “not autistic” adult autistics may seem, how “not like your kid” we seem... we were also autistic kids at one point, and we do remember.
... and sometimes, the things we remember will stick with us forever, for better or worse.
What memories do you want to leave your kid with?
I have a great life, a rewarding career, a fantastic marriage, and a robust social life (well, pre-covid, anyway!). All of is in spite of my childhood. I was lucky, I emerged unscathed.
However - like many autistics - I have no contact or relationship with my birth family ... and life is much better for that.
I don’t think that “autism parents” tend to think that far ahead, about how their kid will grow up and look back on how they were treated.
I don’t think they realize that one day, that kid will grow up, find their community, and start undoing all the damage that was done to them as a kid.
I don’t think they realize how many of us out there know - from personal experience - that those who are quickest to demonize their “monster” child... are likely to be the monsters, themselves.
Please keep all of this in mind, when you attack autistic adults for standing up for autistic rights.
In the meantime, here's some more reading for you:
After an Autism Diagnosis: 13 Necessary Next Steps For Parents
How ‘Autism Warrior Parents’ Harm Autistic Kids
How listening to autistic adults helped me understand and support my son
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Vicky Finnemore
Thank you so much ❤️ My son is autistic, and is the most amazing person I know. My son is expected to fit in with the ‘normals’ and what a bunch of screwed up peeps us normals are! I’ve gained more understanding from your experiences than any book or article I’ve read re autism. Thank you xx
Vicky, mum to Mark, aged 10, from the UK
Annie
Thank for this. Like you I always felt like an alien left on the wrong planet, children the same age as me I found dumb. Mr Spock was my idol, oh and Spiderman.
I always doodled, I always had music on when I did my school work.
Sorting Legos by colour and size before playing.
I also loved sorting books in the school library.
I sometimes sort out shelves in stores when something annoys me until hubby says, you don't work here. LOL
I never had close friends until I finished school.
I used to walk on my toes.
I still get terribly upset when someone gets bullied in a book, a movie or TV series. Injustice towards me or anyone else make me furious. And yes, I still remember all the bad things that happened to me and all the tragedies I was unfortunate enough to witness.
But thankfully I grew up in home full of love and with an undiagnosed Autistic mother who just got me and still does.
Karine
This was a fantastic post to read.
It's also weird to recognize myself in some of what you mentioned about your childhood, and seeing some of my older son. ADHD does have some overlapping traits with autism. Like you, I was a doodler and needed to do it to help me focus. My son was a shirt sucker and has some hypersensitivities.
I really appreciate when you share your experience like this - I find that it helps me learn and grow in my open-mindedness. Thank you.
Bev Kukhta-Jackson
Marie, this is is excellent. I could see you as a child in the library and schoolyard and as a teenager at the rink in your descriptive writing. Thank you for explaining your experiences and feelings to help people better understand autistic children and adults. You are a beautiful, caring and intelligent woman.