“Funny, You Don’t Look Autistic.”

Once I received my autism diagnosis, I found that about 1 out of the 5 carefully chosen people (I have not come out at work, for reasons that will be saved for another post) said some variation upon “but you don’t look autistic!”

I realize there has been post after post written about this on the Internet, so at the risk of being redundant I’ll specify how that particular sentiment feels to me. I remember one day coming across an article about a young autistic woman who was participating in a school program where their parents (in this case, her and her father) were invited to a prom for special needs teenagers. Her mother had taken a number of pictures of her and the first thing that took me aback were this young woman’s hands. Her hands were similar to mine: overly large for the rest of her frame with elegant, elongated fingers.

I spy these similarities everywhere: the thin, large hands, the way when I smile naturally (as in when I’m actually happy about something) my upper lip pulls back to reveal my gums. But when I looked back at that photograph of the young woman and the unfortunate way her autism was referred to as “so severe,” I recognized her in me.

Another reason a lot of people will say “but you don’t look autistic” is because I speak in a way that is considered to be speaking verbally. Interestingly enough, more than one person has inquired whether I learned English as a second language or if I am from “across the pond.” It’s not simply because I might have an unusual way of speaking, but also because sometimes my brain will have me say the exact opposite of what I mean to say. Example: I will say “I did like that movie” and in my mind I believe I said “I did like that movie,” but what actually ends up coming out of my mouth is “I didn’t like that movie” and I’m not even aware I said the opposite unless someone tells me.

Obviously, when you say the exact opposite of what you meant, it can end up with hurt feelings and confusion, but the only way that I can prevent it (or so it seems), is to be painfully aware of each and every word that I speak aloud. It takes a lot of concentration and effort; it’s not at all “natural.” And even then, I still speak a dialect of the English language that sometimes seem to be unusual. I say words in a way that makes people think I’m from the Midwest, yet I’ve never been there. I mispronounce words such as mayonnaise (I say it like “mannaise”), words like “moon” and “room” come out sounding like “mewn” and “rewm.”

But! Here I am, looking perfectly non-autistic, right? I think what happens (and my neurotypical husband has helped me a lot with this, to hear back the things that I don’t realize I’ve said/done) is that if I say something strange or say the complete opposite of what I mean, the regular person will assume I am trying to be funny or … maybe I’m just a little weird. But autistic?

I’m not that clever, but if I could come up with a new acroymn it would be the YDLA (You Don’t Look Autistic) effect. Whenever someone says I don’t look autistic, a part of me wants to ask, “what is it about me that makes you say that? Is it because I am using my mouth and not an assisted typing device? Is it because I am not flapping or doing some kind of tic that you would find abnormal in your presence? Is it because you feel you can communicate ideas to me and I am listening?” I think a lot of it are those things; there is the assumption that I am more “normal” because I fit in a convenient picture of normalcy. For them.

Imagine a pianist got up on a concert stage dressed in a ballerina outfit. If they sat down at the piano and played incredible music, you might think “well, that’s just how they dress. They are clearly a pianist!” But if I stand before you and seem completely normal, but then launch into a in-depth conversation about Stephen Hawking, seemingly out of nowhere you might think, “That’s a little odd. But maybe they just really like Stephen Hawking.” But see, I’ve already fooled you. You don’t know how many hours I might have spent researching black holes and fixating on how Stephen Hawking’s family spent every dinner reading their own book to themselves. Or how Jane Hawking noticed right away his long, thin fingers (Another post for another day is the danger of assuming someone is autistic).

When I am in my comfort zone, i.e. at my house, I do a lot of what we call jumping from topic to topic. For my son and I, it is a easy and comfortable way of talking. We can move from wildly different topics (spending either 5 minutes or 50 minutes, or maybe 5 minutes on 5 different topics), but for my neurotypical husband it is incredibly hard to follow and ends up being a massive headache.

Oh, but wait, I’m normal. Right? The problem that many of us who experience the YDLA effect is that it can be tiresome to continue the facade that these people expect of us. Because, of course, if we did anything strangely different than that would shatter the perception that they were right about how they perceived us. I’m not saying that we should all go and let it all hang out, because frankly, I don’t want to. I know that sentiment can be sometimes viewed as a little radical and dangerous, but I’m not suggesting that autistic people shouldn’t “act” autistic in the way that is natural for them. I’m just saying that those who experience the YDLA effect are often experiencing being on the spectrum in public in a different way.

An example: I saw a young man in the grocery store wearing earbuds (with an iPod or some such strapped to his belt) and clutching a shopping list. He was clearly trying to overcome the horrible clashing experience that the grocery store can be (the “background” music, people talking, people in every aisle and in the middle of where you’re trying to walk, etc) with the means he had, i.e. the headphones. But he looked just as silently horrified as I often am when I have to go the grocery store. I wanted to tell him it was okay, I understood, but he was possibly another person whom a lot of people say, “you don’t look autistic.”

What I would really love is if a person says, “hey, you might not realize this, but I’m autistic” that others would respond, “I appreciate you sharing that with me. Thanks.” Because for some people, it is like sharing the part of themselves that they feel like no one else can see, yet at the same time people must somehow be seeing. Because often we do feel weird, we feel odd, we feel that the way we look at people when we’re trying to understand them can be a little daunting. Recently, when my husband was talking about something, he suddenly stopped and said, “why are you looking at me like that?” I was troubled, because the way he reacted made me think I had looked at him in a way that was bizarre. It was then that I realized what I had been doing: “That’s my concentrating face!” I was concentrating so hard on what he was saying, because I was interested, that my facial features made him think something must be wrong!

So yes, the almost humorous thing is that I do think I look autistic. But because I don’t fit in some people’s perspective of what autism must look like, they see what they wish to see: perhaps odd, sometimes confusing, but a mostly normal person.


A History of Hanne’s Universe: The Diagnosis Story

Every older person who finally gets their autism diagnosis (I say “older” here to mean 30+, but understandably there are twentysomethings who do not get diagnosed at an early age as well) usually loves to tell their story of when they were told “yes, you are autistic.” I think the reason for this is that many of us felt different or weird, or we noticed similarities in our autistic children and wondered “is that me, too?” For many of us, an autism diagnosis gives a meaning to the fears and bewilderment of why we do the things we do. But sometimes, it can also cause new fears and anxieties such as “now that I know I am autistic, is there nothing I can do about it?”

Due to the awful costs of health care, I feel strongly that there is nothing wrong with self-diagnosis so long as it leads one on a path to treating oneself better, more kindly and with greater understanding. For my own reasons, I wanted a medical professional to tell me whether or not I was autistic because I doubted my own self-diagnosis and had told myself I was just looking for an excuse for being so odd!

I sat down with a neuropsychologist who was well known in her field for her work with autistic patients. I was expecting a number of tests, but instead she just sat across from me and said, “So, tell me about yourself.” I was thrown a little off-guard, but soon I was able to unravel the story of my childhood: an early reader but a late talker (according to my parents, I did not talk until age 4. But because it was the mid-1970s and they could “understand” me, for some reason it did not cause them alarm) and unable to connect with peers except for those in the advanced reading group I was in (my first nerd tribe).

My father would often tell me that when I was a child I would tell my complete life story (and, to their dismay, the life story of my parents) to cashiers, waitresses, anyone who would listen to a squeaky-voiced gangly little girl. I told this doctor about how I felt the entire world a little too vividly. Despite my growing hearing loss (and annoying tinnitus), I have the inability to filter out any noise around me.  Sitting in a doctor’s waiting room often becomes a feat of strength as I hear every single conversation, every cough and hiss of the heater. A repeated tone on someone’s smartphone as they receive texts can cause my anxiety to ratchet up to fearful heights.

I also have the worst autistic super power ever: I remember people’s wardrobes, the jewelry or watches they were wearing, the way the wore their hair. I can’t remember right away what I had for dinner yesterday, but I can recite my co-worker’s entire wardrobe, right down to the shoes. Not very useful and terribly distracting.

I can also notice if something in an office was moved or something new is in its place. I once saw a therapist who, due to office space, had to see me in a different office EVERY time I went to see her. The changes were so extreme that I had to stop seeing her, it was way too much overload.

So, I told this doctor all of these things. She asked me to walk across the room, she examined my hands and my feet (I have very long fingers and toes, as does my son, which often makes doctors think we have Marfan’s Syndrome). Her questions did not alarm me and it felt good to at last tell someone what it felt like to be me. How in elementary school,  at a birthday party, I told the birthday girl’s mother that her cake was “crummy.” Of course what I meant was “crumbly,” but since I knew that the “b” in the word “crumb” was silent, I thought I was using the adjective correctly! When the girl and her friends cornered me on the playground the next day, I found out I was very wrong… I remember how upset I was, clearly I hadn’t meant any harm.

The doctor said it looked that it certainly looked like Asperger’s Syndrome to her (the same exact diagnosis that was given to my son) and that she felt that on the whole, it seemed like I was doing all right. I had a job, a husband, a child, a house. All the things a “normal” person should have.

In hindsight, I can’t blame her for thinking that my life was going pretty well. But she was not a therapist and I couldn’t tell her what was really going on. I had the diagnosis, which is what I had come for. I thanked her and left.

Getting that diagnosis was an extreme relief to me. Now I could look at the way that I thought, certain obsessions I had and the world around me in a new way. I could look at myself in a new way.

The problem I soon found was that when one is diagnosed with Asperger’s, it’s usually what is considered “autism lite.” Or, to some people, not even really autism at all… which I feel can be a dangerous conclusion because then it leads people diagnosed with Asperger’s to feel that somehow their autism ought to be easier. And this is where it tends to fall apart.

My son can feed himself, but he eats a total of approximately 5 foods. He can dress himself, but he will only wear certain clothes. He can now be in a crowd without wearing headphones, but he will still get agitated if it’s not a situation he feels he can navigate adequately. The more and more I investigate the type of autism that he and I experience, I have come to the conclusion that while autism is indeed a spectrum, any autistic person can move to different points on the spectrum on any given day. Imagine the autism spectrum as being a volume meter and the needle is forever moving between what the neurotypical world considers “high” and “low” functioning.

It is unhelpful to consider those diagnosed with Asperger’s to always have their needle in the high functioning zone just as it is unfair to insist those diagnosed with autism must always have their needle in the be in the low functioning zone.

I have a lot of other thoughts on functioning and so forth, but I’m going to stick just to the facts of my story for now. Please feel free to share thoughts or links to your own diagnosis story; I’m always curious to read them. If you are not autistic and have a loved one that is, as always please feel free to comment as well.

Welcome to the Autistic Odometer

a trip meter showing trip a and trip b

After a long time of believing that I really had nothing to say, I am attempting one of my new year’s goals to start a blog. The theme of this blog has come to me many times in the past, inspired by pressing the “trip meter” of my car’s odometer.

“Unlike the odometer, a trip meter is reset at any point in a journey, making it possible to record the distance traveled in any particular journey or part of a journey.” Wikipedia, Odometer.

My son was diagnosed with Asperger’s Syndrome at age 8 following a “diagnosis” of Developmental Delay. I was diagnosed with Asperger’s in my late 30s after I recognized many of my son’s traits and struggles as similar to mine. While he and I both embrace “Aspie” as a term, it also sometimes can make others believe we are more high functioning than we really are. I realize that to use the term “autistic” can also be a loaded term, but I feel there is wiggle room for both. I feel our gender has also come to play in how our autistic minds grew: I was gregarious and excitable as a child, but became withdrawn and scared as I did not understand the complexities of my brain and why I was teased for my quirkiness. My son resorted to shoving people alway, literally, as a way to protect his overstimulated mind from the outside world.

When I received my diagnosis, I told my son and he hugged me tightly. We were now pals in this strange and wonderous journey; the journey of our intricate minds. I often hear that autistic parents of autistic children have a bond that can make neurotypical parents jealous, but I’m here to tell you this: that bond can be both something that is wonderful and incredible, but it can also sometimes keep the autistic parent from understanding how their autistic child is a separate person from them and is often having an entirely different journey than their own. I only say this because I have found myself declaring to others that I knew “exactly how he feels” but in hindsight, I only thought I knew. He is a completely wonderful individual, but he is an individual and not just a smaller version of me (regardless of how closely we resemble each other physically).

This is why I decided to subtitle this blog “Trip A, Trip B.” Because even though my son and I may share some of the same neuropathy, we are very different in many ways and I cannot assume to “know” him and all his thoughts simply because we share a diagnosis.

This blog is a record of the distance he and I make in the world, nearly 10 years apart in age. He is autistic in an age of the Internet, where more and more autistic people are letting their voices be heard every day. I grew up autistic in an age where the term “autism” had a single stereotype. There was seemingly no spectrum upon which I fit. I am fortunate that my son has opened up his life and his struggles to me. Even so, he keeps many of them secret and that is part of the reason why I choose anonymity, at least for now until such a point in time comes where he and I feel okay to be “out.” I hoping in time he will choose to voice his thoughts either via dictation or typing, but I leave it to him to choose to do so in his own time.

For now, I hope my thoughts will suffice for now. I look forward to sharing with you.