Dog training instructor: “Get excited! Look happier! Make your voice happy! You have to sound HAPPEEEEE! If you don’t sound HAAPPPPEEEEE!!! your dog won’t know that she’s doing it right.”
Random stranger, after a 5-minute phone conversation: “You don’t seem like a very nice person.”
The Scientist, after sharing something meaningful: “Do you have any feelings about what I just said?”
Phone interviewer, mid-conversation: “I’m glad I’m recording this. You talk so fast, I could never take reliable notes.”
Many people, in many situations: “Shhh. Keep your voice down. The whole floor/house/airport/neighborhood doesn’t need to hear your story.”
More people than I can count (sarcastically): “Don’t sound too excited about it.”
Who Needs Prosody? Not Me
The first time I ever heard the word prosody was when Jess was in high school. She went to a performing arts magnet school, where she majored in creative writing. Occasionally her report cards would mention that she was working on prosody as part of a poetry class.
I’ve been planning to write about gender and autism for a while now. Months ago, I wrote a personal reflection piece. It got two emphatic thumbs down in beta, so I let it languish in my drafts folder. Then, after some feedback from commenters here, I decided I would write a more informative companion post as context for the personal reflections, but that never happened. Then I cannibalized the personal reflections piece for something I was invited to submit to an anthology, which took me weeks to write because apparently everything takes me weeks to write lately.
Which left me still wanting to write about gender and autism here. As a first attempt, I’ve surveyed some of the ideas that people have put forth about gender and autism over the years, starting with Asperger himself.
Note: I’ve linked to a bunch of articles in this post, many of which I don’t agree with. However,I want to share the background information that I used so you can make your own decisions. Also, most references here are to binary gender and gender norms because that is the way most of the research is framed.
The Original Gender Link
In his paper describing his case studies, Hans Asperger hypothesized that autism must be a sex-limited or sex-linked condition because he had only observed it in boys. However, he also noted that some mothers of boys at his clinic who had autistic traits, which he found puzzling given the lack of girls who fit his model. His explanation for why there might be autistic women but not autistic girls was to suggest that autistic traits develop in females only after puberty.
He went on to state that he’d studied over 200 additional autistic children and had concluded from his observations that the autistic personality is an extreme variant of male intelligence. It’s important to note here that Asperger’s model was developed based on case studies of 4 boys who had been referred to him for behavior problems in school. All of them were considered to be uneducable in the traditional school system, creating a very specific profile on which Asperger based his observations.
It’s interesting to contrast Asperger’s idea of male versus female intelligence with Simon Baron-Cohen’s male and female brain models. Asperger believed that females were better learners with a tendency toward concrete practical thinking and tidy methodical work. He thought that males, on the other hand, were naturally gifted with logical ability, abstraction, precise thinking and formulating, and were predisposed to excel at independent scientific investigation. Continue reading Gender and Autism: A Preliminary Survey Post→
Catastrophizing is one of those autistic traits that when I first read about it, I thought, “Oh, I never do that.”
How wrong I was.
I catastrophize daily. It’s usually small stuff that blows over quickly–I’m not going to get to the post office before it closes which means I won’t get my important overnight package and I’ll have to go back tomorrow and everything will be delayed and I should have left home sooner and why did I take a right out of the parking garage instead of a left because taking a right always means waiting in more traffic even though it’s more direct well obviously it’s because I’m stupid and don’t think things through so it’s my fault if I get there too late but maybe I’ll be able to beg one of the workers who’s closing up to get my package because that worked once before and . . .
Next thing I know, I’m at the post office and it’s not closed. Crisis averted! Except this was a fake crisis, made up in my head because I was catastrophizing.
Snowballing a Crisis into a Catastrophe
I don’t mind minor catastrophizing. It’s annoying but not detrimental to my psyche like serious catastrophizing is. The serious type starts out small–like a case of poison ivy starts with just one little itchy bump–and gradually creeps up on me until I find myself taking a sledgehammer to my self-esteem. Continue reading Catastrophizing Sucks→
I’ve seen it used to describe autistic behavior in the context of “nonfunctional routines” and “nonfunctional play.”
Raise your hand if you think your routines are “nonfunctional.” I will happily concede that my routines are inflexible and specific, even weird and inexplicable at times, but nonfunctional? No way.
My routines have purpose. Without them, I risk becoming paralyzed or adrift. My carefully organized life goes all to hell. The plants don’t get watered. The dog may or may not get fed. I forget to shower. I get anxious about what’s for lunch before I’ve even finished breakfast. I spend too many hours happily chasing after this idea or that, forgetting that the rest of the world exists.
In the absence of routines, I just plain forget to do things. I drift. I perseverate and spend way too much energy on the blizzard of little choices that typical people find effortless and aspies find exhausting, never getting around to the more important stuff. I become all details and no big picture.
Take breakfast, for example. I find it fascinating that some people (a lot people?) wake up not knowing what they’ll have for breakfast. Presumably they walk into the kitchen or the diner or 7-11 and just decide on the spot what they’d like. This is an amazing feat of executive function and one that I would find stressful beyond words.
I eat the same thing for breakfast everyday. It frees me from having to think about what I’m in the mood for in the context of what we have in the house, the comparative calories and nutritional value of my choices, how much time it would to prepare each choice, the possibility that I’ve left some better choice off my list not to mention the fact that I’d have to shop for these choices at some point, thereby having to choose not once but twice.
Instead, I grab a bowl, slice up some fruit, dump in my favorite cereal and pour milk over it. It’s simple and it makes me happy and I don’t have to use up precious brain resources before the sun is barely over the horizon. That seems pretty damn functional to me.
Routines give my life structure. Within my routine, I always know what I need to do next or I at least have a limited number of “preprogrammed choices” to pick from. While this doesn’t entirely prevent unwanted surprises, it reduces them to a tolerable level.
If you’re not thinking “yes, exactly!” at this point, you’re probably thinking I’m the most boring rigid monotonous person in the history of humankind.
Fear not, I can be flexible if I have to. Let’s stay with the breakfast example. There are times when breakfast at home isn’t an option. Vacations. Special occasions. Power outages. This used to upset me, but I’ve learned that being grumpy at breakfast when there are so many delicious things to choose from is not only an example of a nonfunctional attachment to routine but a real drag.
At first I had to do the adult equivalent of a social story: Sometimes the restaurant doesn’t have the food I want to eat. That’s okay. There are a lot of other foods on the menu that I can try. Many of them are probably things that I would enjoy.
(That doesn’t look like me at all but I have zero drawing skills so I had to rely on the stock characters at Pixton for an assist)
Yes, I felt a bit odd having to repeat this to myself, but over time it worked.
Which isn’t to say that I’m routine-free on these magical breakfasts away from home. I can be happy with coffee if the restaurant doesn’t have chai. I can enjoy French toast as much as an egg sandwich or a bowl of oatmeal.
You won’t catch me spontaneously ordering a mango smoothie or freestyling my way through the make-your-own-omelet choices. I still have a routine for breakfast; it’s just different.
I’ve discovered that it’s not routines themselves that are problematic, it’s the appropriateness of the routine I choose to run. At home, I need to run the home breakfast routine; when I’m out, I need to run the restaurant breakfast routine. The restaurant breakfast routine has more options. It’s not one that I’d want to run everyday, but I can do it as needed without the kind of negative consequences I’d face if I had no routine at all.
What does no routine at all look like?
The Scientist and I went to a new lunch place last week. First of all, it was one of his totally unplanned let’s be spontaneous adventures so I was already a bit flustered by the last-minuteness of it all. The menu was blessedly limited, except for the all-day breakfast option, which I considered then eliminated on principle, although I’m still wondering even as I type this if I should have factored the breakfast items into my decision.
Anyhow, I ended up choosing a grilled ham and cheese but not before I’d analyzed the pros and cons of everything on the menu that I’d even remotely consider eating. I cycled through a half-dozen choices before settling on the ham and cheese, mostly because that was the choice I was thinking about when the waitress appeared in front of me. If she’d arrived a minute earlier, I would have had a BLT. Before that I was settled on a burger. Thirty seconds later and I might have ended up with ham and egg sandwich.
I have no idea how long I would sit there looking at the menu if I wasn’t forced by circumstances to make a final decision. Ten minutes? A half hour? Indefinitely?
Choosing what to eat at a new restaurant probably sounds trivial to anyone who is running at full executive function capacity. For those of us who have impaired EF, every single one of these decisions uses up resources that could be better spent on important stuff like being productive at work, home or school.
Routines may look nonfunctional and even limiting, but they’re often just the opposite. They allow me to spend less time sweating the small stuff, freeing up my brain for the more important aspects of adulting.
This week’s questions are about acceptance and gender/sexuality/body image. You can answer here or at Survey Monkey, wherever you feel most comfortable. (I’m going to break from pattern and answer anonymously this week, because . . . reasons.)
I’ve created two separate surveys at Survey Monkey:
As always, this is open to anyone, regardless of official diagnosis.
Acceptance
Do your friends and family ask you about your diagnosis? Do you feel supported by them?
Do you ever feel ashamed to be autistic/technically disabled/different? Especially after spending a big chunk of your life as a ‘normal’ person?
Do you all experience a lot of double standards regarding your autism, and how do you deal with this? For instance, it annoys me so much that an NT person can move their hands around, fiddle with clothing etc, but when I do it, it’s stimming and therefore A Bad Thing in the eyes of others.
If you could be neurotypical, would you want to be?
How often do you hear someone use autistic as a pejorative?
Before you realised you were autistic did you ever understand yourself as being somehow not human or not from your culture of birth? (e.g. an alien from the wrong planet or born into the wrong country, century or species etc)
Gender/Sexuality/Body Image
How do you relate to gender? What is your understanding of the word/concept?
Has there been a point in your life when you felt that you wanted to be, or were meant to be, a gender different to the one you were raised as? (If so, why do you think this was, how old were you, how long did this last?)
Do you currently believe in or follow gender roles and stereotypes? (for example, roles/rules about how you’re meant to dress and present yourself, what interests you’re meant to have, how assertive/emotional/nurturing/etc you’re supposed to be, what role you’re supposed to take in personal and professional relationships, etc)
If you are some variety of transgender or answered that you’re gender nonconformist in some way, do you think that this is in any way related to your autistic traits? Do you think you ‘do gender’ or ‘do transgender’ differently to other people because you’re autistic?
Is your sexuality, romantic orientation or preferred relationship structure different from our cultural norms in some way? If so how does this differ and do you think this is related to your being autistic?
Have you ever had any difficulties with your self image, if so how did these manifest? (such as physical/bodily gender dysphoria, body dysmorphia, eating disorders)
Tuesday!!!!!! I’m so excited. I’ve missed our interactive Tuesdays.
This week’s survey questions are all about special skills and fun things that didn’t quite fit in the other categories. You can answer here in the comments or answer anonymously at Survey Monkey. Question #10 has 4 parts because Survey Monkey only allows 10 questions on their free surveys and I didn’t want to break this into 2 surveys.
Answer as many as you like. Tell us about your awesomeness. Have fun!
Special Skills and Fun Stuff
What is your favourite thing about being autistic?
Do you have hyperfocus? Do you like it? How long do you focus for, on average?
If you like numbers, what’s your favourite number game?
What is your autistic superpower? (data processing, attention to detail, math, super-concentration, beautiful flapping, lucid dreaming, synasthesia etc)
What cool thing about being autistic do you wish that neurotypical people could experience?
Apparently, most people feel that their inner self has a particular age unrelated to their chronological age. How old are you inside? Are you older or younger than when you were a child?
If you have a photographic memory, how do you cope with physical locations becoming crowded with all of the history?
Do you have childish or otherwise ‘age inappropriate’ interests or did you at an earlier point in life, such as during your teenage years?
And a multi-parter for number 10 because Survey Monkey only lets me make 10 questions. Do you:
Around the time I started blogging, a blogger that I was following made her 100th post and I was in awe. I wasn’t sure if I could stick with this blogging thing long enough to make it to 100. I wasn’t sure if anyone would read what I wrote or if I had enough ideas to make more than a few posts.
It turns out that I probably have enough ideas for a thousand posts. Even better, I have an amazing group of readers who I’m enjoying getting to know. I didn’t realize how interactive blogging can be. Again and again I’m humbled by the comments here, by the kind words and the trust. By your willingness to share and be open and support each other and make this journey with me.
And to those of you who read and lurk, I see you, pushing my post view count up day after day. I know you’re out there and I’m grateful. Don’t be shy about joining in the conversation if the spirit moves you.
A Change of Plans
I was going to post one more survey tomorrow before I leave for my Big Adventure, but I’ve decided to wait until I get back. My executive function has been in a downward spiral for the past week. Right now I have the EF of a squirrel.
So here’s The Plan:
100th post
Put blog on hiatus
Big Adventure Part 1: Go far far away
Big Adventure Part 2: Come home, immediately move to new apartment
Die a little
Recover
Post survey part 4
Start writing again
I have no idea how long 5 and 6 will take so I’m not sure how long the hiatus will last. Maybe close to a month? Hopefully my Big Adventure will give me lots to write about.
I’m sorry to keep messing with the survey schedule. I know unexpected change can be frustrating.
WTF Executive Function?
My Big Adventure is looming large. A major trip followed by a move is a lot to cope with. Massive change, lack of control, uncertainty, sensory triggers, major sleep disruption, yadda, yadda, yadda. I used to think that the uneasiness and disorientation I felt before a big event was anxiety but I’m starting to think it’s actually stress-induced deterioration of my executive function.
The degree of my uneasiness is directly proportionate to how stressful I anticipate an event will be. The next few weeks are 7-9 our of 10 on my stress-o-meter. Not just an evening or a day of level 7-9 stress, but a full two weeks of it. The anticipation I’ve been feeling over the past week has given me a chance to step back and observe my reactions to extreme stress.
Here’s what I’m discovering: the closer I get to the Big Adventure, the worse my executive functioning is becoming. About 10 days ago, I started to notice that I was having trouble concentrating on work. I made myself a detailed schedule, plotting out a reasonable number of tasks each day and allowing myself five days of no complex work leading up to my trip. That helped a lot.
Then I noticed that I was having trouble staying organized. Moving and preparing to travel overseas involves a lot of planning. Random details were constantly flying around in my head, especially things I absolutely shouldn’t forget. Turning the utilities on/off. Buying dog food. Changing my address on this account and that account and some other account. Packing tampons and melatonin and my laptop cord. Picking up moving boxes at the grocery store. My passport!
Finally, I took out a notepad and wrote everything down–lists, important dates, schedules, reminders. The notepad sits on the kitchen counter and every time I think of something, no matter how trivial, I write it down.
Gradually, I started to lose interest in communicating. I’ve mostly stopped keeping up with social media, email, etc. Soon after that, I started to struggle with writing. Just getting through this fairly straight forward post is taking me forever. I keep losing track of thoughts and going down blind alleys. (There also seems to be something wonky about the tenses here, but IDK.)
I’ve been spending a lot of time this week doing stimmy, low-cognitive-demand things, like playing Temple Run, taking long walks and being silly with the dog.
I’ve been double and triple checking everything I do, especially for work. Still, I find myself making a lot of little mistakes. Putting my empty cereal bowl in the fridge instead of the dishwasher. Putting clothes in the dryer but not turning it on. Not realizing I’m wearing my shirt inside out until the end of my run.
So this feeling I get–disconnected, disoriented, unfocused, withdrawn, restless–this thing I’ve been thinking all these years was anxiety is looking more like a deterioration of my executive function. Thinking about it in that way has removed a layer of stress. It also explains why my “anxiety” symptoms only match a small subset of typical anxiety symptoms (restlessness, difficulty concentrating, becoming less social, fatigue).
Instead of worrying about it and beating myself up for not coping well and powering through it like I’ve done in the past, I’m being kind to myself. I’m making accommodations, acknowledging that I shouldn’t be doing complicated work projects right now, taking more breaks during the day, asking for help/advice where I need it, reminding myself that it’s temporary.
By not pushing myself, I feel like I’ve deescalated my stress quite a bit. I’ve also been able to avoid negative coping mechanisms like perseverating, withdrawing or being controlling. This makes for a happier marriage and a happier me.
See You on the Other Side
Assuming all goes as planned, I’ll see you in 3-4 weeks. Until then, be well.
Four years ago, The Scientist and I adopted a dog. This is Emma, a few days after we brought her home:
Emma was a rescue. She spent nearly 3 months in the shelter system. The week we adopted her, she was featured in the shelter’s weekly newspaper ad that highlights the hard cases. We didn’t know that at the time.
When we visited the shelter, The Scientist and I agreed to walk around separately and then compare notes on the dogs that seemed like good possibilities. Emma was on The Scientist’s list; I hadn’t noticed her. Most of the dogs in the shelter come running to the door of their enclosure when a person walks by. Emma sat in the back corner, wary and watchful.
But that was okay. I understand what it means to fear change.
She fit my criteria (female, medium-sized, short-haired, not hyper or teething or a submissive piddler) so we took her out to the shelter’s backyard for a visit. As soon as we let her off the leash, she ran to the opposite side of the enclosure, as far away from us she could get.
We sat down on the gravel and waited. Eventually she came over to tentatively check us out. I didn’t realize at the time what a huge step this was for her. After talking it over, we decided to take her home.
We had no idea what we were getting into.
Shortly after arriving home, I took her out into our walled-in backyard. When I turned on the hose to water some newly planted trees, she jumped the three-foot wall and bolted.
All I kept thinking as I tried to lure her close enough to grab was, “If I call the shelter and report her missing on the same day we adopted her, they’ll never let me have another dog.”
I finally managed to coax her back into the yard. In the coming days, every time I turned on the hose she bolted over the wall. When I unloaded the dishwasher, she ran off to hide in another room. When the laser printer started up, she fled from my office like a bomb had gone off. When I picked up a ball to throw it, she cowered and hid under a bush.
But that was all okay. I understand what it means to have seemingly irrational triggers.
We took her to the vet for a check-up. One of the first things the vet said was, “You need to start socializing this dog immediately or she’ll bond exclusively with you and won’t be able to tolerate anyone else.”
At the time, I was having trouble imagining her bonding with anyone. She was content to spend her days alone in the yard. Some nights it took me a half hour or more to get close enough to leash her and bring her inside. Even when it was snowing, she preferred to dig a hole and curl up in it, oblivious to the snowflakes accumulating on her. Once I got her inside (she refused to let the Scientist get close enough to leash her), we had to lie flat on the floor and be very quiet to get her to approach us voluntarily.
But that was okay. I understand what it means to be slow to trust strangers.
She was an exceptionally good dog. She climbed on the couch once. I told her to get off. She never did it again. She never chewed up a shoe or a sock or anything else that wasn’t a dog toy. She rarely had an accident inside. What she did do–and still does when she’s anxious–is pace. Relentlessly. In circles. She also compulsively dug holes all over the yard.
But that was okay. I understand what it means to engage in repetitive comforting activities when you’re anxious.
I researched how to socialize a traumatized dog. I rewarded her for channeling her stress into her chew toys, for smelling objects that frightened her, for making eye contact. We enrolled in puppy kindergarten. For the first six weeks, we had to carry her into the classroom because there was no way in hell she was going through that door voluntarily.
It was too noisy, too unfamiliar and there were too many strangers. It took both of us to manage her during the hour-long class. We were all exhausted when it was time to go home.
But that was okay. I understand what it means to struggle with new situations, strangers, and loud noises.
I read and read. I was becoming an expert on dog socialization. One book after another emphasized the importance of routines in making a traumatized dog feel secure. A dog that knew what to expect was a happy dog.
This was not news to me.
Gradually we got to know Emma and she got to know us. We discovered that she has some scars–one of her ears never grew (it’s all scar tissue), her muzzle is scarred, and her right rear hip bone sits half out of the socket, poorly healed from some unknown injury. We don’t know her early history, but the evidence points to a rough start in life.
We also discovered that she loves to play and is very affectionate with people she’s grown used to. She warms up to friendly strangers more quickly these days. She’s still terrified of children, but has learned to politely share an elevator, as long as everyone stays on their own side.
She’s a loyal guard dog, an enthusiastic running partner and she instinctively knows when one of us needs comfort. The last time I had a meltdown, she came and laid her head on my cheek as I was curled up on the floor, crying. She reminds me to feed her if I forget and nudges at my elbow to get me to take a break when I’ve been at the computer too long.
She’s come to understand what I need in much the same way I learned to understand her in those early weeks and months.
They say dogs resemble their people–or is it the other way around?–and as you’ve probably guessed, Emma and I are kindred souls. I wonder if The Scientist picked her out because she reminded him of me.
It’s Monday morning and The Scientist is off from work:
Him: Do you want to go to the diner for breakfast?
Me: No.
We never go to the diner on Monday. It’s not part of The Plan.
We’re hiking through a new trail system:
Him: That trail looks interesting. Let’s try it.
Me: I think we should stick to the route I planned.
I don’t even consider whether the other trail might be more interesting. It’s not in The Plan.
We’re driving home from a quick trip to the mall on Sunday afternoon:
Him: Let’s go to the movies!
Me: . . . .
That’s the sound of my head exploding. The Scientist, you see, is very spontaneous. I am not. He can decide on a whim to go to the movies. He’ll drive to the theater, pick something that looks decent and is playing soonish, and buy a ticket. Then he’ll find a way to kill time until the movie starts. And he might enjoy the movie or be a little bored or end up thinking it sucks, but he’ll have a good time regardless.
I don’t understand this. At all.
A movie is not part of my daily routine. It requires contingency planning. It raises many many questions that have to be answered before A Plan can be put into place. What will I see? When? Where? Can I get there in time? Will I have to wait? Will I be early enough to get The Right Seat? Do I want popcorn? How long will the movie run? Should I eat before? After? Where? How much time will that require?
And my response to all of these questions?
NO!
Do not want.
Too hard.
Let’s go home and sit quietly and think about maybe going to the movies tomorrow. When we have A Plan.
Yes, that’s much better.
I have a very strong NO reflex.
Do I want to do something that isn’t part of The Plan? NO
Do I want to unexpectedly deviate from the schedule? Serendipitously try something new? Alter, vary or disrupt my routine at the last minute? NO, NO , and NO
I don’t cope well with unexpected anything. With adequate warning, I manage change pretty well. I vary my schedule, go new places, and try new things without excess trepidation. I need enough lead time so I can mentally prepare myself but once I have a contingency plan, all systems are go.
Without enough warning, however, my instinctive response to anything not in The Plan, is NO. Often an emphatic and even angry NO. Yes, unplanned change makes me irrationally angry.
I don’t stop to consider whether the change might be better than what I’ve planned. I don’t weigh the pros and cons. I’m not easily persuaded. In fact, the more you try to persuade me, the more panicked I’ll start to feel.
And the stupidest part of my NO reflex is that the change often is better. Going out for breakfast with my husband on a Monday morning? That’s actually a great idea. The food would be good. We’d have enjoyable relaxing conversation. What’s not to like about it? Why does the fact that it’s Monday preclude me from enjoying something, well, enjoyable?
There is no good logical answer to this. My fictional Plan isn’t an etched-in-stone prescription for a happy life. It’s a coping mechanism. At times it’s helpful and at times it’s an impediment.
I suspect my NO reflex is related to the weak central coherence that’s a part of Asperger’s. Aspies tend to see the details where others see the whole. The Scientist perceives going to the movies as one cohesive thing. He’s a top-down kind of guy who expects the details to fall into place along the way.
Me? I see going to the movies–or any unexpected event–as a massive overwhelming collection of details. Each detail seems to set off a cascade of more details, creating a complex matrix of endless details, into which I’ll be sucked and never return . . .
Okay, so it’s not quite that bad. But it can feel that way at times.
Being Okay
Consciously thinking about my resistance to unexpected change has led to the idea of “being okay” with things.
When someone asks me to do something unexpectedly, I momentarily shush the NO reflex. I let my initial panic at this unexpected request subside, then I try to consider the options objectively.
Breakfast at the diner on a Monday?
Evidence in favor: spending time with my husband, good food, a relaxing start to the week, variety can be refreshing
Evidence against: cuts into my planned work time, higher fat/sugar breakfast might affect my mood temporarily, there may be some sensory overload to deal with
As much as I’m tempted to, I don’t allow myself to include “not in The Plan” as evidence against anything. I remind myself that I can “be okay” with doing something different. I don’t have to feel uncomfortable with an out-of-the-ordinary event.
I’ll admit, this doesn’t always work. Often I’m 80% okay and 20% uncomfortable. But that’s better than not going and beating myself up about it, which is also a strong reflex. It’s not like I enjoy raining on everyone’s parade. The other option–the one I used to force myself into–was reluctantly going and being 100% uncomfortable. Given how unhealthy both of my previous responses were, 20% uncomfortable looks pretty good.
I’m not ready for any unplanned trips to the movies, but I’m happy with the day-to-day decisions I make lately that aren’t an automatic NO. Sometimes I say yes and sometimes I say no. Each response is a conscious, mindful decision, not a reflexive reaction.
I used to feel guilty about my constant string of NOs. There were many and they had a negative effect on my life. I didn’t want to be a terminal spoilsport. I didn’t want to be so rigid about everything.
It wasn’t until I started to understand more about Asperger’s that I was able to make sense of my NO reflex. Before, I saw myself as negative and controlling. A lot of other people saw me that way too. Now I know that difficulty with change is an aspie trait and one that I don’t have to be confined by.
I can choose to say yes and I can choose to say no.
It’s not as simple as it sounds, but it’s worth the effort and the more I practice, the more natural it’s becoming.
Through the magic of old home movies (actually DVD transfers of grainy super 8 footage), I’ve been able to study bits of my childhood, looking for typical early childhood signs of autism.
Hindsight is not only 20/20 it’s very entertaining. I decided to liveblog scenes from my autistic childhood, so you can share in the fun.
Let’s go back in time . . .
DVD #1: The Early Years
Through most of the first disc I look like an average baby and toddler. Maybe a little hard to engage at times. I’m often staring intently at something off camera. I’m interested in objects as much as people. Give me a baby doll and I’ll probably hug her. Or wield her like a club. It’s a toss up.
I’m not the most expressive baby. I more often look panicked or confused or grumpy than happy. Hmmm, when I do look happy it tends to be the shrieking, hand flapping sort of happiness.
Then this happens:
My dad is on the floor in front of me, just outside the cropped frames. At first he’s making noises and I’m laughing. After a few seconds of that, I look up toward the camera, suddenly oblivious to him. Frustrated, my dad puts his hand between me and the camera. Note the unchanged expression on my face before and after. He shakes my shoulder, tickles me, calls me, tries the hand thing a couple more times. Nothing seems to get through to me. I’m still staring at whatever’s caught my attention when the frame goes dark.
Doesn’t respond to his or her name or to the sound of a familiar voice.
Soon I see more clues:
51:55 – I’d rather sit and bounce on my ball than throw or kick it.
53:01 – The first of many shots of me happily swinging on my backyard swing set.
54.35 – I’m intensely interested in hammering nails into a piece of scrap wood. With a real hammer! There’s an entire reel of hammering. Perseveration R Us.
58:38 – A little hand flapping for the goats at the petting zoo.
1:04:14 – Here I am getting a haircut. I loved going to the hairdresser because it meant I got to play with the rollers and hair clips. And by play with, I mean sort by size and color.
Doesn’t play “pretend” games, engage in group games, imitate others, or use toys in creative ways.
DVD #2: Vacation!
Being away from home causes me to stim nearly nonstop. In the first twenty minutes, I’m 3 to 4 years old and still an only child. I wonder if being the first child–with no siblings to compare my behavior to–makes my autistic traits less obvious to my parents.
3:40 – Here I am rocking back and forth in my stroller at Santa’s Land.
5:21 – My parents prompt me to wave to the camera. Again. I rarely wave unless they tell me to.
Uses few or no gestures (e.g., does not wave goodbye)
8:12 – An entire reel of me sitting beside my inflatable pool, washing the grass off my feet. I’m still doing it when the camera shuts off. I seriously did not like having grass stuck to my feet. Or grass in my pool.
9:40 – Happily swinging on a porch swing.
9:52 – Really happily swinging on a chain link fence. Okay, more like happily full body slamming the chain link fence.
Flaps their hands, rocks their body, or spins in circles
10:39 – Staring intently at an animatronic display. So intently that I have my face pressed flat up against the glass.
11:40 – Swinging on a glider. A disproportionate amount of these movies are of me swinging on things.
11:55 – Stimming with Santa! Here’s how my 4-year-old visit with Santa goes: I get on his lap. I sit facing away from him and never once look at him. I fiddle with the candy cane wrapper in my hand, examining it like it’s the most interesting thing I’ve ever seen. Santa says something to me. I pretend he doesn’t exist. I fidget with the wrapper some more. Santa says something and waves at the camera. I enter a state of serene bliss in which nothing exists but the wrapper. Santa waves some more. Santa tries to take away my candy cane wrapper. The screen abruptly goes dark.
Exhibits poor eye contact
12:42 – More rocking, this time while posing in front of a statue of a giant pig.
12:56 – More intense staring at animatronic gnomes.They’re rocking gnomes. I love them. In fact, I love them so much, I’m rocking in time with them.
13:20 – More staring. This time at dwarves.
14:18 – Here I am rubbing Humpty-Dumpty’s egg-shaped body. Over and over again, my parents pose me on or next to something and I immediately start rubbing my thumb or palm over the closest surface.
Engages in repetitive gestures or behaviors like touching objects
15:49 – Swinging from the rope of the school bell in an old fashioned schoolhouse.
16:32 – Bouncing up and down with the White Mountains in the background.
You get the idea. Ten more minutes of vacation footage and I’m constantly in motion. Bouncing, rocking, fidgeting with my windbreaker zipper, kicking my feet, flexing my knees, jiggling my feet, rubbing surfaces, hand flapping.
Moves constantly
I’m thinking it’s time to shut the DVD off, assuming I’ve made my point, when I see my sister do something I haven’t done once in more than 90 minutes of video: she points. She’s about a year old, and she’s pointing at the petting zoo animals. That’s when it hits me. I have one of the classic early childhood autism symptoms–a failure to point at objects.
Doesn’t point, wave goodbye or use other gestures to communicate
Soon we’re at Disney World with a family friend. She and my sister point again and again at things they’re excited about. I don’t point at anything. Not once.
30:06 – I’m about six here and I’ve learned to wave at the camera without being reminded. I’m riding on a carousel and wave at the camera every single time I go by. Yep, I’ve got the waving thing down good.
35:36 – We’re at Gettysburg. I’m around seven years old. My mother and sister are posing by a canon, waving at the camera, chatting away. I’m climbing on the canon, rubbing the canon, pretending to ride on the canon, paying no attention to them or the camera.
Appears disinterested or unaware of other people or what’s going on around them
It’s interesting to see footage of my sister and I at similar ages. I see how much more likely she was to engage with the camera, to wave spontaneously, to be smiling or talking or paying attention to the people around her.
I also see that I took a lot of cues from her. She’s four years younger, but at times–like when we’re interacting with characters at Disney World–I’m obviously watching her and following her lead.
And now that I’m no longer the sole focus of the camera’s attention, I’m a lot more likely to just wander out of the frame.
DVD #3: A Slew of Holidays with a Dash of Empathy on the Side
12:10 – Back in time again, to my 2nd birthday party. It’s a huge one. Every cousin, aunt, uncle and grandparent wedged into our basement rec room. I’m looking a little overwhelmed, circling a pole in the background as my cousins mug for the camera. When it’s time to blow out the candles I bravely poke a finger into the icing, lick it off my finger and immediately grab a napkin to clean my hand. Some things never change.
17:51 – Halloween. I’m six years old and for the first time I see evidence of my inability to tell if anyone is paying attention when I’m talking. As I scoop the seeds out of my pumpkin I’m rambling on about something to my sister who is too young to understand and my mother who is bustling around the kitchen, not even in the frame half the time. I’m blissfully undeterred.
Tends to carry on monologues on a favorite subject
20:12 – A bunch of Halloweens flash by. I’m Raggedy Ann. I’m a nurse. I’m a cat. Every costume has a stiff plastic mask which I pull off repeatedly. After yanking off the cat mask, I tug at my hair with both hands. Even today, my single most vivid memory of Halloween is the warm wet sensation of plastic against my face as my breath condensed on the inside of those masks.
29:50 – It’s snowed! My eighteen-month-old self is skeptical. I touch the snow with one mitten. Look at my hand. Immediately begin flapping. Cut to a shot of me a few months later, enjoying a fine spring day by toe-walking up the driveway. Yet another thing I’d say I never did if I hadn’t seen it here.
32:50 – I’m sitting on the couch with a doll. My parents have mounted a light on the camera to improve their movies. I peek toward the camera, grimace in shock (or pain?) and close my eyes. I not only don’t look at the camera again, I turn my doll’s head away too. Empathy! Does it still count if it’s for an inanimate object?
May be unusually sensitive to light, sound and/or touch
40:19 – My sister and I are playing with my dolls in my room. By playing I mean I’m lining them up against the wall by height while preventing her from touching them. She enjoys this about as much as you’d expect a toddler to.
Obsessively lines up or arranges things in a certain order.
Looking back at these old films through the lens of autism is really enlightening. I had telltale signs of Asperger’s syndrome at a time when AS didn’t exist. I don’t remember much of what I’ve related here, but I do remember being a generally happy kid in my preschool years. Because I didn’t attend nursery school or daycare, I guess spent my first five years in a bit of a bubble, happily stimming my way through Santa’s Land.
Was I a happy kid or what?
Signs of Autism in Early Childhood
While I’ve highlighted many of the early signs of autism in my observations of my younger self, each child is different. You can find comprehensive lists of early signs and symptoms at Mayo Clinic: Autism Symptoms and/or the CDC’s ASD Signs and Symptoms.
Musings of an Aspie 