Shameful vulnerability and the longing for autistic access intimacy

Content: This post includes mentioning of an activity that occurs in a sexual context


A while ago I got to try a new medication and even though I’m still very ill, it has a good effect on one of my most problematic symptoms. Now, when my heart doesn’t go bananas and pushes me into a horrible PEM (Post-Exertional Malaise, core symptom of Myalgic Encephalomyelitis) crash that I never recover from every time I feel a little arousal, I can have sex sometimes. Not often, not without it affecting my health, but sometimes.

One of the things that I’ve discovered is that I really like it when my partner strokes my back. My spine used to be very sore but nowadays it isn’t, and that means that the experience of having my back stroked changed radically. It turns me on, but I also like it in contexts that aren’t sexual. This isn’t complicated regarding my diseases, pain and disabilities, it’s not complicated for my partner either so in theory, this is great.

Practically? This was (is) a huge deal for me to admit, both to myself and my partner. This is shameful and just writing it makes me blush and the butterflies in my stomach go wild. Why?

For a couple of months I didn’t at all get why and honestly, I couldn’t really handle thinking about it either. However, it bothered me so much to feel so ashamed and not understanding why that it kept coming back to me. How can it feel so difficult to like having my back stroked? It’s hardly considered taboo or particularly kinky to me. As a matter of fact, I feel way less bothered by a lot of other stuff that I guess I do consider kinky.

Then it dawned on me: It’s about vulnerability. It’s the same thing coming back again and again. Admitting this is a sort of exposure that means acknowledging a part of me that I’m still struggling to deal with and don’t have words for yet. It’s the scared, traumatized part of me that fears being judged for who I am, for my perception and sensory issues. This isn’t just about what feels good, this is about who I am. About having everything that is me rejected, dehumanized and considered not valid. This is about being autistic and connecting with my autistic self, and that is a very taxing thing for me. It’s also something I’m longing for.

My partner is not a judgemental person when it comes to sex, and my fear isn’t that he will judge me for this. This fear is so much deeper, because it’s about taking the risk of not having my sensory experiences understood. My partner can very often understand me on an intellectual level, but I long so hard for the kind of validation I only get when somebody shares my sensory experiences. I guess I’m longing for autistic access intimacy, and – I’m hurting from the lack of it.

Autism Support and Despair

So, there’s something I need to discuss. Something I need to tell the world, because seriously, the people who should know better obviously don’t understand this.

Being an autistic parent to an autistic kid is hard. It’s not the autism that’s hard, it’s the allistic, and abled in general, world. The more I analyze and understand myself and the further I proceed in the process of unboxing myself as an autistic person, the more I realize that the clashes with the abled world are so horrible to me that I need help. Theoretically, I need some kind of support person helping me navigate, translate and cope. Theoretically.

In reality, the abled world don’t get what autism is. No, not even the people who are praised for their so-called amazing skills. They lack a power analysis, they lack a critical perspective and they lack the ability to analyze themselves as allistic people. All this means that so many of the allistic so-called autism experts can’t help me, because they constantly repeat and reproduce the things that are causing me trouble.

Because I’m parenting an autistic child I’m a member of some parenting groups and are exposed to the so-called allistic autism experts on social media and there are few things in the world that can make me more devastated than seeing how these people are worshipped like heros for their very mediocre understanding of autism. Keep in mind that these are the comparatively knowledgable people, the ones that sometimes listen to autistic people and aren’t doing ABA.

The other day, I read a bit from a book that’s supposed to be some sort of guide to autistic parents. The book says that being autistic means that it’s hard to understand, read and interact with other people. However, this chapter didn’t mention at all that most allistic people are spectacularly bad at reading, understanding and interacting with autistic people. This may seem like a minor detail but it’s not. In fact, it’s this kind of lack of critical perspective of oneself from the allistic world that makes me feel so much despair and think that the chance of ever finding somebody that could offer me professional support and that wouldn’t consider me unrelatable is zero. Because professional support is organized from a very allistic point of view where I live.

I need support in a lot of everyday situations but the existing autism support pushes me into so much despair. I’m trying to reconcile with the fact that I will never have this support, but seriously, it’s difficult. When I was a kid I thought that as an adult, the world wouldn’t be a totally unreliable, scary, confusing and dangerous place anymore. But it is.