Content: This post mentions functioning labels and gives an example of ableism.
Last night when I had dinner with my partner I heard myself say “There’s no point in me trying to handle some of the contact with school, I only screw things up”. Earlier in the day I had received an email from the school nurse where she told me that she had a policy not to send a picture of herself, as I had asked her. My kid had an appointment with her in a week and since he has never met her, I asked her for a picture and explained that since he’s autistic he needs to see a picture of her in advance. Despite the fact that I had explained in detail why my kid needs a picture of her, she denied him this. I started crying, my thoughts got disorganized and I didn’t understand what was happening and why. I was trying to explain my kid’s need but judging from her response, she either didn’t care or didn’t understand what I meant. I felt like I was trying to translate from the autistic world to the allistic, but the allistic world didn’t understand or care.
In this situation, I needed more support. I needed somebody to help med navigate. Somebody who assured me that what I had asked for was totally reasonable but also somebody who could both help me talk to the school nurse and try to find a solution, and somebody who could help me deal with my own reaction.
I’ve been thinking about this a lot lately, that in more and more situations I realize that my support needs are much bigger than I’ve earlier considered them. Besides from being autistic I have a neurological disease (ME) that has made me homebound and almost completely bedbound and it has made me very limited in a number of areas. I many situations it’s not easy to say exactly how much of my disabilities that stem from being autistic and having ADHD and how much that comes from ME, but lately I’ve been thinking that I have much bigger support needs than I realized that stems from me being autistic. This kind of situation where I can’t navigate in the messy social playfield that comes from having an autistic kid in an ableist world occures more and more often.
The insight that my support needs as an autistic person are bigger than I thought makes me ask myself: What will happen if I try to ask for this support? The answer is, unfortunately but not unexpectedly, quite depressing. I see other autistic people being deemed either as “high-functioning” and therefore denied adequate support because they are considered “almost normal”, or as “low-functioning” and then dehumanized, maybe getting support but being totally deprived of autonomy and treated with no respect at all. Considering this, I don’t think I will ever get the support I actually need. The ableist division of autistic people in functioning categories makes it difficult for autistic people to get the support we need and still be respected as human beings, because functioning labels are so intrinsically bound to the perception of the allistic as normal and superior.
In an earlier post, I covered how hard I’ve been fighting all my life to appear normal. Besides from exhausting me and giving me a painful level of self-hatred, my efforts have also made it impossible to ever be met like an autistic person and get the support I actually need. My support needs are totally underestimated and therefore I’m considered “high-functioning”. Being considered “high-functioning” is in itself considered a reason for me not to have much support needs at all.
Functioning labels are illogical and serve as a reinforcer of an ableist understanding of support needs and autism. The division of autistic people in functioning categories obfuscates an understanding of autism beoynd ableism, and that’s harming autistic people.
Grieving is a paradox. On one hand I feel numb, like I’m stuck in gray vacuum. On the other hand I’m overflowing with some kind of emotion. Maybe it’s sadness, maybe it’s something else in this as well as the the sorrow.
When I think about it, I guess there’s a bit of shame in this. I’m ashamed because the autistic world and the allistic world aren’t great at working together and I’m stuck in between them, blamed, ridiculed and belittled for my efforts to translate and convert logics between these worlds. For some reason, it’s always up to the people from the autistic world to explain and prove our needs to the allistic world and when I have explained myself into exhaustion, the allistic world usually doesn’t appreciate my efforts. I try to explain, illustrate and point at sources just to be told that my needs are just as unreasonable as my kid’s needs. They won’t be accommodated because of some made up policy that makes no sense at all more than that it fits allistic people.
I know that it isn’t my fault, but the shame is still deep and burning. The sadness of being denied accessibility isn’t only for all the practical problems it causes – it’s just as much about the message that refusal of accessibility sends me. The message that says that I’m not worthy the access to healthcare or that my kid isn’t worthy of access to education. That we’re asking for something unreasonable when we’re asking for the same things as abled people. Like we’re not real people.
It seems like the grieving hits me like a tornado every time I’m told that accessibility won’t be created for me or my kid. Every time I’ve had a long email conversation, filled with efforts to make the receiver understand my or my kid’s needs, and finally get a clear answer instead of the endless BS of circling around my question, it hits me with a pain I thought I would get used to. But I’m not getting used to it. My skin isn’t getting thicker for every time it happens, instead I break more and more and just fall deeper and deeper inte the burning shame.
Because I’m not a real person in the abled world’s eyes, and neither is my kid. I can’t even carry my own pain, and knowing that my kid will go through this is too much. I can’t handle this.
My mind is occupied with love. Love and autism.
I’ve experienced romantic love a couple of times, and I’ve had plenty of experiences of sexual desire. I’ve had romantic crushes that have faded, flings that turned into friendships, friendships that evolved into romantic relationships and so many other kinds of relationships where the experience of love has changed over time. At the moment, I love a couple of people, all in unique ways. My thoughts are often occupied with how difficult I find it to trust people and let them in, but when I think about it like this I can see how much warm feeling for other people I have at the moment and have had in the past and that makes me happy. Love isn’t one single, monolithic feeling or experience. Rather, love is multiplicity.
One of the people that I’ve been (or maybe still am) deeply, romantically in love with stands out in ways that I don’t know how to describe. I just wrote that all my experiences of romantic love have been unique to me and they have, but this one is different because not only did my love for her feel different than for all other people. My feelings for her had (have?) a whole separate dimension. Honestly, it’s not a perfect way to describe it, but I’m lacking words and that’s not only because I’m writing in a language that doesn’t feel fluent to me. What I felt (feel) for her was something so…special, rare, different, unique… no words are really fit here… that I don’t have any words in any language. Despite that, I have a strong urge to write about it. It doesn’t make sense. Or maybe that’s exactly what it does.
When I think about my time with her, Liz, I feel like I’m totally falling. It was like I was standing at a mountain and when I was with her, a separate world opened and we fell straight into it. Considering that the expression “falling in love is” exists in several languages, I suspect that I’m not the only one who have experienced the falling feeling. Tomber à l’amour, falling in love. However, what was special with my feelings for Liz wasn’t the falling feeling, but that new dimension of intimacy.
It was like we fell straight into a world where our words and actions had a meaning that only we understood. Like the words I had been saying, writing, hearing and reading all of my life had only been making some kind of sense, because my undiscovered autistic self had always lived with such a chaos and confusion. When other people talked about how they, and as they assumed even I, experienced the world, it only fit to some degree. I had been trying to be that person that other people told me that I was, a real person that experienced sensations like real people should, and felt feelings like real people should. It had never fit, and all my words had always been scraping and rubbing my mind instead of fitting smoothly. And then I fell deeply in love with Liz and we talked about experiencing other people’s feelings, about not being able to shield ourselves and about wanting so desperately to be close to other people while easily being overwhelmed and needing space and quiet time.
I was shaken to the ground. I was so used to hiding everything that was me, so used to be an unrelatable freak that had to exhaust myself in my efforts to be like (what I thought was) a real person. With her, I lost everything that I had to defend myself. I showed myself to her and it scared me to the bone.
This happened several years ago, before I had understood that I am autistic. Up until recently, I never understood why I was so shaken by this experience. Now I think I finally know why.
TW: Suicide, death, ableism, school
I’m thinking a lot about death these days. One moment I’m scared that my heart and the rest of my body is failing me, then suddenly I fee like this life can’t be ended fast enough and maybe I’ll have to end it myself.
I can’t end my life, because I have to save my kid. But I can’t do much for my kid, I’m trying but it’s not enough.
I feel like I’m a burden to my partner, because my partner needs to focus on finding a school that won’t harm my autistic kid.
Sorry, this isn’t much of a post. This is just a bunch of desperate thoughts, because I can’t take this hell for much longer and no matter how hard we try, it’s not enough. Being an autistic kid who learns easily but are harmed from an allistic culture means there are no accessible schools.
As usual, I really don’t want any advice. If you comment or email me telling me what to do I’ll block you. I’m not writing this because I think anybody can solve anything for me, I’m writing this because my thoughts are too heavy to stay in my head.