I had an epiphany the other night about disability.
I was walking to meet my partner at a restaurant. I could feel the familiar unease building; I’m much more anxious meeting someone at a destination than arriving with them. As always, I sent him a text message asking where he was sitting. I wanted to know exactly where I would have to look to find him when I arrived.
I had been having a fairly good day, and I was feeling more self-reflective than usual. Right after I hit send, I thought to myself—why do I need to know where he’s sitting? Why does it matter so much?
I know the easy answer.
Autistic people like predictability.
I, as an autistic person, like to have a clear mental image of exactly what’s going to happen before it happens. It calms me. It makes me feel safe. But why?
Whenever I feel anxious my go-to method to calm down is to imagine the situation I fear and think of the (realistic) worst case scenario. It helps me stay grounded in the fact that what I am worried about isn’t as bad as it seems. This also helps me understand why I’m anxious about something in the first place.
So I thought: What happens if I show up and don’t know where my boyfriend is sitting?
My gut reaction was, I won’t be able to find him.
I saw myself standing in the restaurant, staring around at all the tables, attracting attention and looking like a clueless fool, my target anonymous in a sea of heads and shoulders and bodies and tablecloths.
The answer was ridiculously simple.
I have poor visual scanning skills, especially in environments with lots of competing stimuli, like a restaurant. I knew that visually scanning for Tom would be very difficult for me. So I wanted to take the easy way out. I didn’t want to have to struggle.
Working with other autistic people in a professional setting helps a lot with my own self-awareness because I can adopt that sort of clinical, third party perspective when looking at myself. This experience is the only reason why the buzzword “visual scanning” popped into my head.
I realized that I don’t “need” to text my boyfriend before I meet him somewhere. I just want to.
I’ve been thinking about this constantly since I thought of it, realizing it extends to nearly every aspect of my life.
For as long as I can remember—probably my whole life—I’ve been confusing “difficult” with “impossible.”
I confuse disability with inability.
Just because something is difficult for me, or painful, or uncomfortable, doesn’t mean I can’t do it. It just means it’ll take more time and effort.
For a long time, I couldn’t wash dishes.
The sensation of getting my hands wet when the rest of me is dry is indescribably violating, almost painful. It’s a kind of wrong that I feel in my soul. To compare different types of sensory violation: if a loud ambulance is like stepping on a nail, then wetting my hands is like a mouthful of live bugs.
Gloves don’t help. I can feel the temperature of the water, and some always leaks through, so I always get slightly damp, even through industrial shoulder-height gloves (I own a pair).
But since this epiphany I’ve gotten really good at doing the dishes.
I just have to accept that fact that it’s horrible, disgusting, painful, and evil. It’s going to be terrible, and there’s nothing I can do about it. But I can do it. Disability doesn’t mean inability.
I’m horrible on the phone. I have such poor auditory processing that can’t understand what the other person says. I jumble my thoughts, can’t tell when I should start and stop speaking, forget half of what I needed to say, and generally feel like an anxious wreck.
I used to never talk on the phone. But I can talk on the phone. It’s just hard. I avoid it when I can, but if I can’t avoid it… Well, I have to feel horrible for 20 minutes.
Too often I put off essential things, avoid important tasks, give up on hopes and desires, all because I fool myself into thinking I can’t do them. In a way, I’m giving in to the black-and-white thinking that autistic people are so famous for. If it’s not easy, I think I can’t do it.
I often feel like I can’t do anything.
It’s more accurate to say that everything is hard for me.
And just because things are hard doesn’t mean I have to give up.
Kirsten, this was so important for me to read, not because I needed to know it, but because I figured this out for myself so long ago that I don’t have access any more to the process of how I figured it out. I’ve been trying to help my children understand this though without much success. Do you feel like anything could have helped you come to this realization sooner?
Honestly, I’m not sure. I have a feeling that if someone else had told me this when I was younger I would have heard but not understood, if that makes sense. Something that’s helped me has been exposure to the “worst case scenario” (dealing with something hard with no support) and surviving the ordeal. But this moment where I put all the pieces together is something I’d have a hard time conveying to someone not ready to internalize it.
LikeLiked by 1 person
Totally get this. I had a very self destructive decade from 15-25, and no amount of great friends trying to ‘talk sense into me’ stopped me from doing what I was. The person has to be ready for the change…
Things would be sooooo much different if autistics and aspies really “got” what you are saying here. I am happy you had the breakthrough, but the breakthrough itself seems like one of those impossible things for the aspie in my life. Because “it’s just how I am wired. I CANNOT change it.” Thanks for writing this, anyway….
I will say the difficult aspect of this is that everything being hard does mean that it takes a lot more energy to do things. If I’ve had a full day then I don’t have the energy to power through the dishes. But life is full of grey areas. Perhaps the aspie is your life will get there eventually.
Visual scanning skills, that’s it! For the first time, I read a reasonable explanation for what I experience every time meeting someone in a restaurant. I prefer to let people going in ahead of me because I struggle to detect a free place for us/myself. That’s the main reason for which I have great difficulties to go into a restaurant just alone. I prefer not to but to wait for the warm season when free places outside can be easily checked out. Otherwise I always send text messages like you to ask where they’re sitting.
Yes!! This makes finding free seats hard too! And finding bathrooms, or anything really. Grocery shopping takes me forever haha
LikeLiked by 1 person
Reblogged this on Spectrum Perspectives and commented:
Right in the feels, and REALLY awesome message, period.
Your epiphany sounds amazing, and go you for facing those dishes!
This was another truly insightful piece, thanks so much for offering a window to your world Kirsten. I have read so much from the perspective of other mums, but hearing about autism through your eyes is helping me understand my daughter’s world so much better. A huge thank you!
LikeLiked by 1 person
Thank you! That means a lot. I’m glad you enjoy my writing 🙂
This is so helpful for parents and friends, In fact everyone, who doesn’t suffer with what you do!
Also it helped me as a survivor of abuse. There are lots of things I avoid in life because they remind me of the abuse. Either having a smallish effect or a very profound affect which makes me feel unable to do some things.
Thank you for sharing as this has made me realise that I can do these things but just don’t want to. Before I thought I just couldn’t do these things. Maybe this realisation is what will help thousand of abuse survivors🙂🙂
I love this entry. I can relate very strongly to it as someone who has always had an anxiety disorder and agoraphobia, but I’m grateful for it as a mother to an autistic daughter. People call me a control freak because of this need to have scripting, but it helps ease the anxiety. It helps to feel as if there’s more of a measure of safety in a situation. Not control… but safety. And my daughter needs it too, more than I do.
I’ve had people tell me that I’m coddling my daughter and “giving her” the anxiety, teaching her to be anxious by teaching her scripting and how to think things through first, through repetition through the years (she’s only 13 years old). People seem to think that the only way children learn is watching adults once or twice and learning by rote, learning by reading, or just figuring it out on their own at some arbitrary point in their lives.
I like your way of sharing insights. 🙂 Thank you. Blogs like yours help me be a much better mother to all of my children.
Thanks for your important insights and thanks for sharing. Very helpful for us NT’s to understand your experience, which helps us to understand what you do and WHY you do it. This is the basis of building trust and respect, and this is what I try to communicate in my new book, Uniquely Human: A Different Way of Seeing Autism. It resonates with your important message.
Are you not dating Alex anymore?
I never was! We’ve been friends for many years, though.