Do you ever get people looking at you in a certain way after you’ve said something? And their look is telling you, “you are not normal and your experience is not my experience”?
I do. All. The. Time.
I wish I had a witty name for the look that people give me, but I don’t. I just think of it as That Look.
It’s a little wide-eyed, and there’s usually a glance to the side – as if the looker is uncomfortable with aiming it directly at me. Sometimes it’s accompanied by a little smile – that’s the amused variety. It comes in several flavours, you see.
Besides That Look (amused), there’s also That Look (amazed), That Look (oh come on), and That Look (this chick is seriously messed up).
I don’t get it from friends and family… much. When it does happen, they often look at each other while they do it, which is extra special.
Mostly it’s from strangers, but only in certain settings.
I never get That Look from clients at work. So whatever it is about me that prompts That Look, it doesn’t happen when I’m in a position of knowledge, educating others about their dog’s behaviour and/or health.
No, it happens when a friend has a birthday and invites a bunch of her friends out somewhere and I find myself chatting with a bunch of perfectly nice and funny ladies. I start talking about something I find interesting and then bam – there it is. That Look.
It also happens in clinical settings. Back when I was in my Generalized Anxiety Disorder group, for example. I got it several times from the leaders of the group. In that case, it was a flavour of (amazed) followed by the words, “that is the most elaborate justification of anxiety I have ever heard.” The second time it was the rare and highly prized (impressed) variety, followed by, “what an excellent metaphor. Yes. Exactly.”
In every case, it happens when I’m either talking about something I have been thinking about, or describing my actual thought processes themselves.
I know I’m a thinker.
I even know I’m an over-thinker.
What can I say? I live in my head, and as I grow older I have become more and more uncomfortably aware that my experience is not the same as most other people’s experience.
Mostly because of That Look.
I’ve often tried to describe to others how I see the world, though I’m not sure how successful I have been at it.
Here is a couple of ways I have used in the past:
My Head As A Room
Imagine that you are in a comfortable room. There’s lots to do in there so you aren’t bored, but if someone needs to talk to you, or if you need to look outside for any reason, you need to talk through the one window in the room, which is uncomfortably over your head. You need to stand on your bed and balance on your tip-toes to look out properly, and talk to people outside or interact with the outside world. This is nice, of course, but it does get tiring after a while. What is especially annoying is when you do get tired so you start sitting down on your bed for a rest but people keep rapping on your window and making you stand up again.
My Head As Underwater
I also sometimes envision my head as being underwater. Sounds are muted, I’m comfortably floating, and I’m in my own world. When I have to interact with the outside, I have to swim up to the surface and tread water. It’s cold out there and I’m exposed to the elements so whenever I get a chance I sink back down.
I like this metaphor but I don’t think it works for other people because a lot of people associate underwater with drowning, and that would make my above metaphor sound bad. So then I try to reverse it, with having to put my head UNDER the water to interact with the world and getting increasingly desperate to come up for a breath but you can’t because everyone else is pulling you down.
That is probably a more accurate picture for most people even if it feels backwards to me.
That’s the problem with metaphors, though, isn’t it? An extrovert listening to my room analogy might think of the room as a prison and the pestering people at the window as rescuers, and that isn’t how I feel at all.
So maybe that’s why I feel like I never successfully conveyed to anyone quite how it feels to be me. But I have always had a nagging suspicion that other people don’t experience life quite the way I do.
That Look is only one of the reasons.
Certain adjectives tend to come up a lot when people talk about me.
“Obsessive” is a common one. People have called me “obsessed” and “obsessive” since childhood, and I’ve embraced it. I get obsessed with stuff. I get fascinated with something, whether it is Harry Potter or dogs or babywearing or whatever. I research the hell out of it. I spend hours learning about it, reading about it.
“You’re obsessed with animals.”
“You’re obsessed with wolves.”
“You’re obsessed with that guy.”
I heard it so often that I took it for granted. Yup, I’m obsessive. And it’s that obsessiveness which often prompts That Look, because I’ll know far more about a subject than anyone would expect or consider normal.
I’m also incompetent.
To be fair, I’m the one who applies that adjective to myself. But I can’t help it. I can’t even put my underwear on properly! I find everyday tasks that others seem to perform effortlessly to be complicated and tricky.
Even Perfect Husband, who routinely applies adjectives like “amazing” and “wonderful” to me, has taken to blowing his top lately over my little idiocies.
He came downstairs once to find me stuffing more fish in an already-full pot of water until the water overflowed and hissed into steam on the hot stove.
“What the HELL did you think would happen?” he raged in exasperation.
For years I’ve shunted stuff like that off, blaming baby brain when I microwaved my yogurt, or stress when a hallucinated adding cornmeal to my shopping cart. But I’m not pregnant. I’m not nursing. And while I’m anxious and overworked and stressed, I don’t think I can blame that forever.
The fact is that while I barely had to study for classes like Radiology or Cytology, my friends in Vet Tech school had to spend hours – literally HOURS – helping me practice folding surgical towels and gowns because I could NOT get it right.
The fact is that I found it easy – no, enjoyable – to forgo all other forms of recreation, giving up television and even my beloved reading to write and publish a 200,000 words sequel to my book over the last year… but I still can’t find a way to make myself wash the dishes on a routine basis.
I’m a mess of extremes, unable to do anything by halves, either sucking at it or excelling at it with very little in between.
And it makes people give me That Look.
And whenever I get that look, it reminds me that I am Other. There’s something about me which is not quite normal.
Perfect Husband says I’m obsessed (there’s that word again!) with figuring out what’s “normal”. But imagine one day, casually mentioning to someone how blue the sky is, only to get That Look from someone and hear, “The sky is pink.” And you say, “what are you talking about? It’s a lovely sunny day and the sky is blue.” And the person says, “the sky is never blue. Skies aren’t blue except maybe at sunrise sometimes. Are you feeling okay?”
So then you start telling someone else about your weird friend who is convinced that the sky is pink, but everyone you talk to assures you that the sky is pink, has always been pink, and that a blue sky sounds plain weird.
Now imagine that this happens to you again and again throughout your life.
Wouldn’t you start asking around whenever someone disagrees with you?
“So and so says I’m weird because of X. But doesn’t everyone do/think/experience X?”
“Uh… no…” they say and then they give you That Look.
Reality is a tipsy turvy kind of a place, and people are constantly trying to convince you that it’s something other than what you see or experience. I think it is understandable for you to become a bit obsessed with trying to figure out what is real, and what the hell everyone else is experiencing.
What it is about you that makes people give you That Look because sometimes, you don’t even know.
And then, one day last month, I read an article that sounded in me like a gong.
It was called “I Thought I Was Lazy” and it tells the story of a girl who just couldn’t figure out how everyone else did things like keeping their room tidy and getting their errands done. Therapists and counsellors suggested apps and time management tricks and none of it worked and no one could understand why, least of all her.
I bet she got That Look a lot.
Well, long story short, it turns out she’s autistic.
I’ve been interested in autism for a long time. I’ve read Carly Fleishman’s book and I follow her online. I follow Ido Kedar and Marco Arturo, too. I loved reading The Spark. When people talk about “lighting it up blue” for Autism Speaks, I go around posting articles explaining to people that Autism Speaks is considered a hate group by actual autistic people.
Just the week before I read that Establishment article I made a donation to ASAN, an actual GOOD autism charity.
But never have I thought I could be autistic.
I’m chatty. I look people in the eyes. I mean, when I was a kid I remember being confused by the direction to “look me in the eyes”. I was never sure which eye to look at. But I’m sure we ALL went through that, right? I mean, that’s just part of growing up and learning how to interact with others right?
Anyway, I understand and use subtext in speech like sarcasm and metaphorical language, too.
Okay, so Perfect Husband has always joked that I… well, I and my mother’s whole side of the family, are amusingly literal, and he has a couple of funny anecdotes to back it up
…And okay, so we do have one case of diagnosed Asperger’s on that side of the family, not to mention a couple of people who everyone knows is probably Aspie but get along just fine so what does it matter?
But according to the article I was reading in The Establishment, our classic picture of autism – Asperger’s or otherwise – is a masculine manifestation. After all, most autistic people are male. Autistic women are rare.
Or maybe they aren’t.
It turns out that women with autism are less likely to suffer from blatant social symptoms. They “mask” better, learning how to look people in the eyes and learning social interaction by rote instead of instinctively.
They are more likely to seek out friendships and while they have the sort of obsessions that autistic people are prone to, they tend to be more gender-acceptable things – dolls or celebrities… or animals.
And unlike most autistic men, women are more likely to suffer from executive dysfunction – rather than being pathologically neat and tidy, they may be pathologically disorganized and chaotic.
Not to say that there aren’t women who present with the classical “male” symptoms – of course there are. They’re the ones most likely to get diagnosed. And there are boys out there too who may be able to mask socially but suffer in other ways, and they may slip under the radar.
So this isn’t totally a sex-based thing.
But women are more likely to present in this kind of muted-autism that people don’t notice.
So I started Googling.
Holy crap, did the descriptions sound exactly like me.
High verbal skills, crappy life skills. Likely artistic or a writer, likely interested in animals. Great long-term memory, shitty short-term memory. Prone to black-and-white thinking. Finds interacting with other people to be extremely exhausting. Easily stressed. Freaks out if too much is asked of her. Loves to talk about her “special interests” (autistic for ‘obsessions’). Would rather engage in special interest rather than interact with friends or family. History of being bullied by peers. Childlike voice.
The lists go on and on and on and it’s ALL ME.
Maybe, when I stand on tiptoe to look out at the world and interact with it… maybe that is me trying to peer out from my autism.
Maybe I’m not just an uber introvert who has to exert myself massively to do the least thing – Maybe I’m autistic.
So I took the lists to Perfect Husband. At first, he was gently cautious, but he read the lists… and he started pointing things out.
“Look at this – overreacts to the slightest criticism. Hmmm!“
“Yep,” I said.
“Likes things to be the same day after day!”
“Ability to “hyperfocus” for long periods of time involved in the special interest.”
“Like the book I’m writing? Yep.”
He was as fascinated as I was.
“I don’t do this, though,” I would say, dismissing one.
“Uh… yes you do, love,” PH would reply.
Far from dismissing me, he became even more firmly convinced than I.
“Holy crap,” he said at one point. “You’re autistic. Suddenly the last ten years make so much more sense.”
It was as big a revelation for him as it was for me. Maybe bigger.
Because for years and years we’ve had fights about how I said something one way and he took it another way. It had been coming to a head recently, to the point where he actually accused me of sighing passive aggressively. I kept insisting that I really didn’t mean what I said the way he took it, but he didn’t believe me.
I thought he was unreasonably touchy.
He thought I was incredibly bitchy.
And the word “autism” changed all of that in a heartbeat.
“You would complain about something or other – some NOTHING of a thing – and I would think that the only reason for you to do that would be to rub it in, because it was a thing I used to do, and can’t do now because of my depression,” he said. “But now I realize – it’s because, for you, it wasn’t nothing. It was a really difficult and scary thing.”
“That’s what I’ve been trying to tell you!” I said.
“But now I get it,” he said.
When I mentioned it to other people, though, people who don’t see me with my mask off, people who don’t see how hard I work to peer out of my little cozy room, they dismissed me. After all, lists like that are a dime a dozen. Isn’t that what astrology is based on? Vague descriptions that could be anybody?
But when I pulled out the list and started reading it off, none of the women I was in the room with could identify with the things that were ME OH MY GOD SO TOTALLY ME.
Besides, if you know me at all by now, you’ll know that I didn’t stop there.
I found rating scales, online quizzes, even long complex tests based on years of data.
Guys, on professional rating scales I come comfortably over the line for Autism/Asperger’s (Asperger’s no longer exists as a diagnosis in North America, so I’ll be referring to it as Autism).
34 on the Baron-Cohen scale (threshold 28)
126 on the Ritvo Scale (threshold 65)
And finally, I went on Tumblr (where all the autistic people be for some reason) and submitted a description of myself to an autism blog, asking, “Is this right? Could I really be autistic?”
The blogger responded that self-diagnosis is common and well accepted in the autism community since it is so difficult to get a diagnosis in adulthood. They said that based on my description I could well be autistic and it was okay to consider myself as such if I thought it fit.
And someone else chimed in saying that “if you can relate to an experience, you’re having the experience.”
I showed it to PH.
“Yer an autist, Harry,” he said.
Yes. I think I am. I think I may have finally found the reason for That Look. I won’t stop getting it. But the next time it happens… at least I’ll know why.
Wow. Just wow. I enjoyed reading this. I can’t relate to this exact experience but I felt a touch of recognition regarding the feeling of discovering something new about yourself well into adulthood. I’m glad that you know this about yourself and I’m happy to hear that you’ve embraced it as you being fully you. I hope knowing continues to be helpful.
It makes so much sense!
I’ve honestly wondered this about myself a lot, because I have a lot of the same weirdnesses and dysfunctions and strange little quirks that you mention here, and have had the same experience of reading autistic people’s experiences and going “… wait.” I am (I think?) relatively empathetic, but the rest of it is… often painfully me, tbh.
I guess I’m just saying, FWIW, if we were in the same group of people, I would be the other chick who was getting The Look. *solidarity high five from across the pond*
Hi five for The Look!
One of my friends felt her son was on the spectrum. She took him to see a specialist and the diagnosis came back “quirky but not in need of services”. We giggle about that but I think that it means he presents in a more typically female way so she’s done a lot of reading and researching to help her son navigate. In doing so, she learned a lot about autism in women and sent along some stuff and lists to me. She felt she might be on the spectrum and I was like omg me too! Maybe not as far into the scale but I get that Look too. But I also feel like I’ve surrounded myself with people my whole life who get it. They look at the world in different ways, not the same way I look at the world, but they think about things. They don’t just coast along thoughtlessly. They’re interesting to talk to and interested in thinking about things in different ways. So I’ve kind of co-opted her son’s diagnosis. I feel like I’m quirky, but not in need of services. I’m glad you’ve found something that makes sense for you. 🙂
One of the things that I was stuck on for a lon time was the fact that I didn’t have any developmental delays – although I definitely had “special interests” from day one. But from what I’ve been reading, many girls don’t show overt signs of autism until their social life gets more complex. That’s definitely me. The older I got, the less well I fit in and the weirder I seemed. A three year old who cries easily and sucks her thumb doesn’t seem as weird as an eight year old who cries and sucks her thumb. And a six year old who pretends she’s an animal all day every daydoesn’t seem as weird as a thirteen year old who pretends she’s an animal whenever she gets a chance…
So I think a lot of us are quirky… until it becomes too much. If I am autistic – and I think I am – I’m not surprised that I went under the radar as quirky but not in need of services. Yes, I was severely bullied in grade 8-10 because I wasn’t emotionally and sexually maturing the way my classmates were. But nothing could have helped with that.
It’s now that I have a full complement of adult responsibilities that I can really see the way my autism affects my life – both positively and negatively. And I am in need of services, now.
Even if that service is a maid.
Nicki Hunt said:
My daughter is dyspraxic, and therefore on the spectrum, it was lovely to read this and get a little insight into the effort needed to socialize in an acceptable way, I’m sure you’re room analogy will resonate very strongly with her.
I hope PH is beginning to feel better again and that life is becoming easier for you all, it’s lovely to have some more writing from you.
Much love xxx
Meagan Campbell said:
I stumbled on this blog years ago and have kept up with it because I felt some sort of kinship with you! (And I enjoy your writing voice!). When I started reading this entry I immediately thought “I bet she is autistic. I wish I could privately message her and let her know.” Then I reached the whole party where you’d realized it yourself! You must feel so, so, SO relieved to know that about yourself! For a long time you’ve thought “I’m different. I’m weird. Something is not normal about me.” And now you know WHY. Such relief must have rushed in! I know this because this every same thing happened to me 8 years ago at the age of 22.
I’ve always had intense interests, animals being a long running one (I did not watch cartoons as a child, instead I insisted my mother record nature documentaries on VHS for me to watch. We are taking from about age 3-4). Well, long story short, autism became on of my intense interests when I was in my early twenties and the more I read about it the more I saw myself described. I am self-diagnosed, though I have discussed with my physician as well as an autism expert and they agree with my self diagnosis.
It’s so true about high functioning autism going inderdiagnosed in girls. We mask the symptoms, find ways to cope, ways to appear “normal”. Inside it is a struggle. Doing the dishes on a regular basis (dear lord, the water is just so disgusting, I would rather do any other chore!), going out and grocery shopping, making small talk, the list goes on! GAD is an incredibly common comorbidity – it is safe and predictably and warm and comforting to stay at home doing the things I enjoy doing. People just don’t seem to understand that I am happy to be alone. It is not a sad thing! The other day I was face painting at a Christmas Party and my mom said to me “aw, look at the boy sitting alone in the corner over there. It’s sad.” My response? “Just because some one is alone doesn’t mean they are sad!”
It is funny how we both have careers in the behaviour realm. You train dogs, I do ABA therapy for kids with autism. On the surface it would seem an odd choice for someone whose own behaviour is sometimes unusual or someone who doesn’t fit in with the typical behaviour of others, but when you think about it it isn’t really surprising. I assume that you, like me, have studied the behaviour of others. You’re intelligent and a quick learner and you’ve made behaviour a topic to learn about. We don’t naturally understand, but through study we have come to understand the ABCs of behaviour.
Gosh, I have so much I want to say to you that I’m kind of rambling on with no real point. I guess what I’m trying to say is this: welcome to the club. Wear your diagnosis with pride. You have a special brain and a great perspective to give the world!
Meagan Campbell said:
Oh gosh, do forgive all the spelling errors. I’m on my phone and shit motor skills + tiny touch screen buttons = mistakes. I do have an honours degree in English and am a self proclaimed “grammar nazi” so I must point out that I acknowledge my errors! (You understand this, I’m sure!)
Hi fellow autie! and Thanks!