Since being diagnosed with autism in my mid-30s, I’ve been re-thinking a lot of things.
I’ve spent a lifetime of trying to appear to be the same as everyone else. I’ve been watching. I’ve been studying. Every book, article, overheard conversation, brings me that little bit closer to passing for normal.
I’ve spent a long time thinking about who I ought to be.
And I thought you were all doing it too. Maybe not everyone. Maybe a few of you were in on the secret, but I assumed, as we all do, that the way I see the world is the way everyone does.
Now I know that when I don’t understand you, it’s not that I’ve missed out the rules of the game, it’s that you’re playing Monopoly whilst I’m playing Rugby Union.
It’s not that I’m coming at it from the wrong angle, it’s that I don’t have the… Whatever-it-is to understand you. I don’t get it. I can’t.
And that’s ok.
That’s what I’m coming to terms with. It’s ok. It’s ok that I don’t want to make small talk, and it’s ok that you do. There will be times when I will. I hope there will be times when you won’t.
I’ve been working on analogies. I like analogies. They’re pictures that you can lay over life to try to make sense of it.
Since finding out who I am, I have been struck by several things:-
When you try to describe what being Autistic is, everyone says, “Well I do that too.”
People say this because it’s hard to describe being autistic. Often you end up clutching a collection of behaviours, such as social exhaustion, hating the phone, wiggling your feet.
And other people say, “I don’t like using phones either, and I wiggle my feet, and I’m shattered after a night out, maybe I’m a bit spectrumy!”
You look at them and something inside dies a little, because you’ve not communicated what you wanted to, and you really don’t want to have to tell them about the time when you were walking down the corridor, and suddenly there was too much noise from all the people, and your head started spinning, and the lights were wrong, and the space was wrong and everything started shutting down on you, because that behaviour makes you vulnerable.
So you smile (because that’s what people do), and you try to stop the conversation, because now you’re upset at yourself, and you can’t maintain eye contact well when you’re upset.
(I say eye-contact! I mean it’s hard to even look at people’s noses, or anywhere near their faces, when it gets too much)
It’s ok. It’s ok that I cocked up because I focused on the behaviours and not the causes. It’s hard. It’s complicated.
How do you explain to someone what it’s like to not have something that you don’t even know exists?
It’s like trying to describe silence to someone who has always lived their life beneath a roaring waterfall. They won’t hear the water. They’ll take it for granted. They’ll say, “This is silence.”
How do I describe a lack of social processing to someone who doesn’t know they do it?
How do I describe how much active processing I put in to everyday tasks, which they can happily do on automatic without noticing?
Did you know that when asked a complicated question, most people will look away from the questioners face, because it frees up processing power? Processing that they don’t even know happens. They will be studying expression in great detail, without knowing it. It’s like having a computer that just provides the answers.
My computer tells me what it sees. It gives me a literal view of the face and its changes. I can use these to compare to what I have learned. I can use my stored knowledge to try to work out what you are thinking, what I should do, what it is you need from me.
But my computer doesn’t give me the answers. Mine gives me problems to solve.
When you’ve spent a lifetime pretending to be normal, you shouldn’t be surprised that people think you’re not autistic.
People have told me how normal I am. How they don’t see any part of me that is different. I think I should assume this is a compliment. I’m sure it’s meant as one.
To me it’s a mirror showing just how much effort I have put in to being someone socially acceptable. Each aspect of me that is deemed “presentable” is an effort. It’s a sort of me. It’s a kind of me.
But it ought not to be.
Oh dear lord the self doubt. I never thought I could accuse myself of not being who I deep-down know I am, in so many inventive and insidious ways.
Post-diagnosis has been a roller-coaster of elation and depression and acceptance and reluctance and “I get to be me forever?!” (Said sometimes joyously and sometimes in pain).
I am autistic.
I am an autistic woman.
I am an autistic mother, person, wife, daughter and so on and on and on.
I’ve taken against using Asperger’s to describe myself, even though it’s accurate, I think for some reason it feels euphemistic.
I don’t like euphemisms.
I don’t want a sanitised, socially acceptable me anymore. I want to be the me that I am. The me that I have always been.
Because I am socially acceptable. I might be a bit peculiar if I let it all hang out, I might seem a bit less self-assured and a bit more terrified, but that’s ok, isn’t it? Other people get to break those rules? I may not be good at breaking rules, but maybe I can add new ones, a few sub-clauses here and there.
It’s what I’m striving for. Being a bit more me. Now is the time.
So today I didn’t hide my hand in my pocket when I needed to stim. It’s the little things.
Tomorrow I will contemplate world domination.
Autism and Expectations 
I’m in the middle of the road here–I am certain that if I were a child today, I would have been diagnosed as on the spectrum, but I have been teaching myself to fit in for so long, I wonder if such a diagnosis would be accurate, or if I’d be one of the kids diagnosed because its the “in” thing to do (because I’m able to pass for normal so well, maybe I’m just high strung, with social anxiety, and a smidge of OCD, it be better to take that diagnosis and leave the autism one to the people who really need it). All I can really say (I’m curious, but not desperate for a formal diagnosis) is that I’m grateful for my husband, who when I told him that I was pretty sure I’d be put in the spectrum during autism awareness week this year, immediately grabbed the blue lightbulb he’d found a few days prior in his sons old room and put it in our outside light. Guess he knows I’m weird whatever the cause may be. ☺
LikeLiked by 3 people
Lovely people who love us are a wonderful thing. As I always say, it’s not the autism that makes my life hard, it’s the fact that the world isn’t designed for me. If it was, I’d be fine.
Having people around us (whether autistic or not) who truly understand and respect our needs, is the real recipe for happiness.
LikeLiked by 4 people
I hope getting the diagnosis answers as many questions as it probably raises. My son was diagnosed really early–he has classic autism versus ‘autism-light’ (which is how I tend to think of it in my neurotypically thoughtless way). I tend to measure my son’s behavior against other children of friends, to help define what is actually autism versus what is something that might be ‘normal’ teenage behavior. Generally, any behavior may be ‘normal’ but that when it is taken to autistic levels generally is increased, or larger, in some way that makes it stand out or separate my son from my friends’ children. I’m not sure if that helps to explain why people say things like “I do that too.” Perhaps they are trying to make you feel more comfortable for your behavior, rather than questioning whether that particular action makes you autistic or not? People–both on and off the spectrum–can get it wrong when they are trying to connect and show empathy for others.
LikeLiked by 2 people
Thank you for a wonderful piece. The waterfall analogy and the “Well I do that too” response resonate with me. At the risk of sounding like a self-diagnosing patient of Dr. Google, I am certain that I have been on the spectrum. The many obsessions, compulsive speech patterns and long periods of social withdrawal in my youth can’t be explained any other way. Like you, I appear normal as far as my presentation is concerned. I’m high functioning, from occupational and academic standpoints. I am also functionally asexual, and reasonably social, after great progress. I am overcoming decades of anxiety and magical thinking distortions. That much needed fixing. At this crossroads, however, I am coming to see that becoming comfortable with my genuine self is more important than changing myself. When others tell me they don’t see how a person can go their whole life without being sexual, I respond that I don’t see how a person could be sexual. Yep, that’s right out of “How do you explain to someone what it’s like to not have something that you don’t even know exists?” Thanks for giving me confidence by summing it up that way!
LikeLiked by 2 people
I am so very glad that it helped. Realising who you are and accepting that is such an enormous thing to do. People will always struggle to understand at times, but we are all getting better at it. Everyone assumes that their own needs and drives are “normal”, and there’s just no such thing.
It’s so hard to deal with the anxiety when we don’t accept who we are. That’s the starting point. Thanks for your comment.
LikeLiked by 1 person
Is there a connection between asexuality and Autism, new to me?
LikeLike
I mean asexually generically. The social skills that make for successful sexual relationships elude some people on the autistic spectrum.
LikeLike
I like labels. Once you have labelled something you have diminished it somewhat. Now you can attach healing properties to it.
LikeLiked by 1 person
Labels are enormously useful for getting across a lot of information really quickly. They only become an issue when people attach value to them. I like labels too
LikeLiked by 1 person
I’ve been diagnosed for a few years now. I can relate to this so much, I had to drop out of uni due to my aspergers giving me issues. It sucks but I see the world differently and can add a new perspective to things. But it’s also really hard to be social, and get my head into the right frame of mind to do things. I have goals but when i try them my head just does backflips. Pain in the arse tbh
LikeLiked by 1 person
Good write-up. I definitely appreciate this website.
Continue the good work!
LikeLike
Reblogged this on Art by Nicole Corrado.
LikeLike
A fantastic post, which I only discovered after someone pointed it out on a Twitter. (I hadn’t delved that far back into your blog before!) Thank you! 😊
LikeLiked by 1 person
Thank you so much. It seems a long time ago now, but still holds true
LikeLiked by 1 person