What do you think of when you hear the word “autism”? For many people, it conjures the image of Rain Man. Or screaming children in public. Or someone “freaking out”, perhaps banging their head on a wall, or flapping their arms wildly and spinning around and around. Although this idea might be an accurate depiction of someone with autism, these are not defining traits of autistic people.
The thing about autistic people is that no two people are the same – just like ALL people. Maybe that’s why there is not a lot of understanding about what it means to be autistic from the general public.
I am autistic.
Probably. (Read my recent post for an explanation on the iffy-ness.)
I am expecting this news will hit the people that know me one of three ways: 1. “Ohhhhh. That’s why.” 2. “Really? You hide it well.” 3. “No, you aren’t.”
For those who have the first reaction… yeah, that’s why. For the second group, that’s part of the problem of recognizing and diagnosing autism and kind of sad, if you think about it. For those who think the last, well… you either don’t know me very well or don’t know much about autism. And I can’t blame you for either of those.
I would say there are VERY few people who know me well, if really any at all. I’ll get into that more later. And as for not knowing much about autism, I myself didn’t really understand, even after learning more about it in my Special Needs class for my ECE diploma in college.
As I mentioned in my other post, about 4 years ago now, a friend of mine made a post on Facebook about being misinformed about Asperger’s Syndrome and how that delayed their own autism diagnosis. A few references to what it was like for them were made and I thought, hey, that sounds like me. Through a series of private messages, asking a ton of personal and invasive questions (LOL Sorry! and THANK YOU), and then doing a lot of research online, I came to the realization that maybe this is what has made me feel different my whole life too.
Through this rather obsessive searching online, I came to the conclusion that I really had had no idea what it meant to be autistic. I knew of the more common traits but not what the actual differences in brain function and processing – the core of autism – are.
There is also a lot of confusion because of the recent changes to the diagnosis and labelling. In short, there is a book – the Diagnostic and Statistical Manual of Mental Disorders, which psychologists and other professionals use as a frame of reference for diagnosing all the various mental conditions. In 2013, the 5th edition (commonly called DSM-5) made a lot of changes to what constitutes as Autism Spectrum Disorder and what was previously split into several different diagnoses (like Asperger’s, PDD-NOS, etc.) are now all under one.
Now anyone who fits the criteria is diagnosed with ASD and it covers a wide range (spectrum) of symptoms. Some may say “high-functioning” vs. “low-functioning”, but there is controversy over that and I myself don’t like it. Pretty much, now, instead of all these different labels and categories, you either are autistic or not.
*Note: At some point, I may get into the issues of “person-first language”, but that is a whole other thing, so for now, just accept that I’m saying autistic person rather than person with autism.
The criteria for being diagnosed with autism covers 5 points. In order to be formally diagnosed, an individual must meet all of them. The DSM-5 is wordy and confusing so I’d rather link you to this guy who is autistic and reworded it so that it’s easier to understand.
From my own understanding, people who have ASD have trouble with social situations in both understanding what is going on and performing the expected behaviours, have narrow intense interests, and issues with sensory input. It’s something that has always been since birth and cannot be “cured” – because it’s not an illness but a different wiring of the brain from ‘neurotypical’ people. The differences in processing, perceiving and understanding the world cause problems for the autistic person and make living in a world designed for NTs difficult.
The problem I have with the leveled functioning labels is that they marginalize in both directions. The low-functioning person is considered stupid or incapable or less of a person. The high-functioning person is considered less in need of help or not disabled enough to count or “deserve” the label. For myself personally, because I have tried to adapt, spent my entire life trying to figure out how to behave in a socially acceptable manner, can speak and maintain a job and have friendships, no one really understands or truly sees how much I struggle.
Just FYI if you are curious, here are the ways having autism makes my life difficult. I’m still learning about this so some of this is a new revelation to me, whereas some troubles I’ve been fully aware of all my life.
(Important disclaimer: I wrote the majority of this post back in 2016. Since then, I’ve had some time to adjust to these things.)
I have always been aware that I seem to think about behaviour (my own and of other people) a lot more than the majority of other people. I wasn’t aware of just how much I do that though until recently. I have always observed other people and the way they act and how they react to the way I act and tried to adjust my behaviour accordingly (not always successfully). I spend hours pondering over the whys. Why do people do [insert baffling behaviour]? What is the purpose of [whatever social construct]? If it turns out to be something that I can make sense of, I will mimic it, making it part of my social repertoire. If I just can’t wrap my head around it, I will refuse to do it myself and will be angry or judgemental when other people do it. I HATE it when people do something for no reason or just because everyone else does it. For the most part, I try to do and say everything with purpose. When other people don’t think, I get very upset. I didn’t realize how much time and energy I was expending constantly evaluating and re-evaluating every minor detail of social interaction I encounter (real life, TV, books, etc.).
Socializing itself is very draining, even when it’s fun. I love talking to people and feeling that connection with other human beings. I love spending time with friends, but it takes a lot out of me and I need a lot of recovery time afterwards. On the other hand, I really dislike structured social gatherings where there is an expectation to behave in a certain way. Weddings are the worst. Not only do I have to do the whole dance of small talk and proper etiquette, I also have to be uncomfortable in clothing I hate.
I dislike meeting new people. I don’t like running into acquaintances. I really struggle with what to say to people. I’m awkward and don’t know how to start, continue, or end conversation. I actually fear it and avoid this type of interaction as much as possible. I don’t even really like getting together with someone I’m friends with one-on-one. This puts too much pressure on me to “be on”. I prefer someone else be there as a buffer. Hanging out with 2 or 3 friends at a time is ideal. There are a few people who I am now comfortable enough with that it’s not so much of a task. (I even have difficulty spending alone time with family members.)
The telephone is a nightmare. I hate making and receiving calls. I will avoid it at all costs. I logically know nothing bad will happen to me, but my instinctive fight or flight thing takes hold and I have panic attacks whenever I have to use the phone. Even if I am close with someone and comfortable with them, the initial starting of the call is difficult for me. I definitely worry about not having the visual cues to aid me in conversation but it’s more than just that. I feel sick even just thinking about it.
As for interests… Hahahaha. Have you read anything else on my blog? I think it’s fairly apparent that when I’m into something, it’s completely life consuming. No prizes for those that know my two biggest areas of interest: any and all things pertaining to Japan (and East Asian, in general) and the Twilight Saga. I don’t like to say I’m an expert in anything, because there are always people who know way more than me, but I know quite a bit about those two subjects in particular and love learning more. I spend an inordinate amount of time soaking up whatever I can or going back over what I already know. I will talk the ear off of anyone who shows even the slightest amount of caring to listen.
I also spend countless focused hours on what I call digital hoarding and organizing. I download crazy amounts of… crap, really. Movies, music, pictures, documents. More than I could ever have time to actually use. And then I catalogue and organize (and reorganize) it all. For example, I like to read fan fiction. I’ve maybe only read about 200 stories, but I have maybe 10,000 collected. I’ll never get to them all. But I like to have them. I like to be able to give them to other people, should they want them. They are all labelled a certain way and I have them all organized into folders. And I have “my chart”, listing the titles and pertinent information about them. I have spent sooooo much time on this chart. I am always going back to it and changing the formatting, the information it contains, the order it’s in, etc. It’s… silly. But I enjoy doing it. I also have a chart for the movies I own that is just as scary.
It’s not just digital things I organize and reorganize over and over. I do this with books, DVDs, the way stuffed animals/collectibles are displayed, etc. I rearrange furniture frequently. I change the order of things in the cupboards. It’s weird. You’d think that I would just put something in an acceptable manner and then go with that, but I feel I can always improve it or that it needs tweaking.
Conversely, I get upset when things are moved by others (namely, my husband) or not placed according to my current system. Example: I like the dishwasher to be loaded in a certain way. To me, it makes sense. The dishes will be cleaned optimally if placed correctly. They won’t be as sanitary otherwise. I logically know this is ridiculous. Okay, when 2 spoons are stuck together, they may have some residue or leftover food where they were touching, but in general, there are no germs left behind if a knife is upside down or right side up. I just like order.
My sensory issues are vast, even more so than I thought before. I’ve always considered myself quite particular. I’ve been told my whole life that I’m picky. But it’s more than just preference. It’s necessity. I thought I was being irrational and immature when I would get so worked up. Now I know it’s because I become overloaded by negative sensory input.
The biggest problem is with smell, but I am also bothered visually, by touch, by sound, and by temperature to the point where I “freak out”. (I don’t really meltdown like some other autistic people might. I may to a degree, but I do experience shutdown a lot.) I wrote on my blog before about soap. This is one example of my narrow acceptance of various smells. There are some smells I love and I find them calming. Most scents are obnoxious and overwhelming. When I encounter a smell I don’t like, I have to remove it (or myself) immediately. If I am subjected to a bad smell for too long, I will become extremely agitated and have had meltdowns.
I should quickly interject to say my meltdown don’t look like other people’s. I don’t scream or hit or things like that. I have taught myself to “behave” as much as possible in public and the fear of public attention is so great that when I lose control over myself, it still doesn’t appear that drastic. (It may to my husband though, who has witnessed this a few times.) As a meltdown comes on, I will flap my hands in front of my face, start … moaning? (IDK what to call it. Whimper, I guess.), then start crying. I might pace or crouch down into a ball. If it progresses, I will start sobbing uncontrollably and hyperventilate.
Usually, I shut down before I meltdown. For me, that means becoming physically still, unable to move without great effort, being unable to speak and becoming upset/crying if made to. I literally look like a robot in power saving mode. I will stay like this until I sleep it off.
Back to sensory stuff…
Visually~ I am bothered by bright lights (I HATE the sun). I am revolted by a lot of things (people eating, other body functions, feet, bugs). I enjoy darker spaces, a lot of colour, many accessories or adornments although I dislike clutter and chaos. I like moving things like kinetic toys but don’t like strobing effects for very long. I like pattern and intricacy and fine detail.
Touch~ I am very discerning with textures. I absolutely despise wet fleece and fuzzy shoelaces. I can’t wear certain fabrics. I don’t mind seams as long as they are symmetrical. I like heavy pressure on my body. I can’t sleep without blankets covering me completely, no matter how hot it is (which sucks, actually). I don’t like hugging people but that is less a sensory thing and more of an intimacy thing. I can’t sit with my legs straight or dangling. I don’t like persistent movement at all. I like to be still as much as possible myself and if someone is near me and moving, I get agitated. (Hubby jiggles his feet a lot and it drives me nuts.) I hate the feeling of things on my face. I don’t use products on my body because it feels bad.
Sounds~ I love music. I love the complexity and harmony of sounds. Natural sounds are very soothing but mechanical sounds are irritating. I enjoy low frequencies. Thunder and rain are my favourite. Sudden changes in volume upset me. Anything high-pitched is not good. I hate alarm clocks. Certain types of voices can either soothe me or agitate me to the point of freaking out. I am extremely stressed by raised voices and become upset when people argue. I have a really hard time understanding what someone is saying if there are other noises happening at the same time. Absolute silence hurts my ears.
Temperature is a problem for me. I can’t seem to regulate. From one minute to the next, I can be freezing and then feel like I’m burning. I prefer cool spaces. I get overheated easily and hate being sweaty. Being hot is another thing that can throw me into a meltdown. I like the feeling of being bundled up but will panic if I can’t strip off whatever it is fast enough. I can’t eat/drink food until it’s cooled and what most people think is cool enough is still too hot for me.
Taste isn’t a big issue for me. I don’t like spicy things. For the most part, my aversions to food are to do with texture. I do have a huge problem with food that greatly affects my life, but it’s more to do with how it makes me feel. I don’t like things in my mouth so I don’t enjoy the physicality of eating, which is annoying, but I have digestive problems so I feel sick the majority of the time.
There are so many little things about me that I am just learning are “autistic things”. It’s actually kind of fascinating how every single little quirk I have seems to be attributed to having autism. It’s making looking back on my life very interesting, if not a little sad. I wish I had known earlier so that I would have had better coping skills and so that I wouldn’t have felt so ‘weird’.
I think maybe at first, realizing this about myself was sort of shocking and embarrassing. There is still huge amounts of stigma around autism and so much is misunderstood. But, really, I’m used to being misunderstood. I’m not going to be taking on the active advocacy role because that is too daunting for me, but I will do my best to be a positive face if and when it comes up.
In a way, I have sort of always known I was autistic. From the very first time I heard about it, I felt a connection to those people I heard about and identified with some of what was being described. It’s nice, after all these years, to know the ‘why’ to almost every question I ever had about myself.
I’m autistic. And I’m totally okay with that.