Beauty

The other day, I was talking to my kid about different countries, their capitals and where they are located in relation to each other. After, my kid went out on the balcony and called in through the open window in my bedroom:

– Mom! It was so much fun to talk about countries.

Indeed it was. We had fun. We talked about in very autistic ways, which means ways that most of the allistic world will never understand, and will certainly not see the beauty in. This makes me sad and happy at the same time, just like so much of the interactions with my kid.

I see beauty in it. I see so much beauty in my kid’s way of thinking and communiticating. In my kid’s being. For me, it’s like I finally have someone to share my intuitive self with. Interacting and being with my kid means that everything that I tried to extinct about myself is possible to see in the light of authenticity, purpose and yes – beauty.

I know that the allistic world will never understand the joy of stimming. I know that you will only see deficits and never see the affirmative bond created when two autistic people are allowed to interact in our ways. You will never see the beauty in info dumping.

I’m happy because I know what we have, me and my kid. I’m sad because I know that the world around us will always belittle it.

We have our autistic beauty and you will probably never understand it, but I will always fight for our right to keep it.

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Creating a Proper Person: Part 2 – Protection

I want to continue the story of how I have spent all of my life trying to be a real person. I need to write this to be able to grasp this and move on, but it’s hard. It’s painful and it’s a messy story with too many elements to parse, intertwined beyond what I can follow.

The other night, I was thinking about my obsession with the idea of somebody giving me permission to protect myself, or even helping me protect myself. I don’t know what that would feel like, but thinking about it is like daydreaming about some kind of utopia. I feel bad for writing this because the truth is that my partner actually does a lot of things in order to protect me, but there’s some dimension of it that I have no words for but that I long for intensely.

Interactions with other people was for a long time something that always, without exceptions, meant being pushed by others into discomfort. After a while, maybe when I was around seven years old, I became complicit and started pushing myself into discomfort all the time. Being autistic means being a human being in ways that the world can’t even imagine is possible, and all interactions with other people mean that everything that is me collides with deeply rooted notions about how to think, what to like, how to feel in order to be human.

I don’t have the words I need to explain this and I keep repeating myself but I’m not getting to the core of my experiences, because I don’t know the terms to describe them. Not in English, not in my first language, not in any other language.

There was something deeply frustrating about learning that my interpretations of everything were wrong but never getting a good answer to the question why my interpretation was wrong. The few times I have come far enough in processing confusing interactions with other people and been able to ask why my way was so obviously wrong I have most of the times not received any reply at all, but just been dismissed as a weird or untrustworthy person. Belittled, humiliated and succumbing to shame I’ve learned not to ask.

My head is messy now. I want to connect the two main points of this post: Being wrong and longing for protection, because I can literally feel the connection inside me.

Being human in a way that is considered so wrong that it made me not a human being anymore means that I have always had to focus on deliberately constructing myself as a proper kind of person. Practising what to say, how to move and what to feel, analyzing other people’s behavior and always watching myself is exhausting, but it also means that I have to push myself into very much discomfort hand harm. I wasn’t allowed to protect myself and nobody protected me. Since I’m now an adult with an unfulfilled need to be protected and being allowed to just exist, without making an effort to appear allistic, I don’t know what to do with myself.

I want to learn to just exist, without masking, but I don’t know how. I can’t come out as autistic because that could harm my kid so getting professional help isn’t an option.

For me, having to construct an allistic persona and always trying to play that part successfully (and always failing) has harmed me so badly and I didn’t understand the full extent of it until recently. Now, the wound is open.

It’s harming me to see teachers ans psychologists praise autistic children who appear allistic. It’s like having to see the horror movie of my childhood repeated again.

I wish so hard that somebody could have protected me against the harm that masking did. I wish I could have had some kind of experiences of what it felt like to interact with someone without exhausting myself when I was a kid. I wish I had a sense of self-worth, and a value as a human being.

Pictures

At the moment, I’m caught up in a process of trying to give my autistic kid what I didn’t have. This is a constantly ongoing project, but right now it means that I’m printing, laminating and cutting out a lot of picture symbols.

We use picture guides, schedules, comic strips and other kinds of visual aids a lot, both for me and my kid. Never as a part of token systems or behavioral therapy (we don’t do that), but as a way of creating predictability and supporting a better understanding of the world. A while ago we changed what kind of symbols we use and therefore there has been some work to update all of our tools. Hence, the laminating and cutting.

My partner thinks that I’m working too intensely with this and in a way, he’s right. I get where that opinions comes from, because I do exhaust myself and worsen my disease (Myalgic Encephalomyelitis), and the symptomes from my hypermobile joints by doing this. It’s just that, I can’t stop. I don’t want to restrains myself any more than I’m already doing. In a few weeks we’re going to a summer house and we don’t have a printer there, so the box with printed pictures needs to be done by then.

I know that a lot of people get bad associations when reading about picture communication for autistic kids, because it’s fairly common that it’s used in token systems, ABA and as a way of trying to make autistic kids obedient and to appear more allistic. This is probably partly a culture difference, because where I live that certainly is common, but picture communication is also something that is used in very different ways. Reducing stress and not pressure autistic kids to talk with their mouths for instance.

I realized how strong the ABA paradigm is in the US the other day when I posted a picture thing from my kitchen on Instagram. Somebody else reposted it and tagged it with hashtags that made it obvious that they interpreted the use of picture symbols in this post as a part of behavioral therapy. It made me feel really bad, even though I understand that this was partly because the person didn’t understand what I had written, because it wasn’t written in English.

Anyway, I feel so much better when we have all our aids and communication supports and cognitive supports ready. I’m trying to help my kid not being as confused as I was all the time. I need our tools in order to be a good autistic parent to my autistic kid. It’s a kind of resistance to the pressure to trying to make us appear more allistic, a pressure we’re constantly subjected to.

Creating a Proper Person: Part 1

I’m Autistic.

Yes, I’ve written this so many times before but I need to write it again. You see, all of my life people have made it very clear to me that I’m not what I should be. I don’t act, behave and react as people think I should but what’s more important is that there’s something beyond the obvious verbs, something beyond the activities, that I don’t do in a correct manner. In a normal, human manner. There’s something about me that is wrong. Unrelatable. I’m a human being but not fulfulling this role completely. So what am I? Sub-human?

It’s true that I don’t know how to behave. A long time ago I had intuitive reactions and behaviors but they were punished, so I tried to learn how to be a proper person. I wrote lists with reminders and directions of how to walk, talk, dress and move my hands and face. I rehearsed my actions in my bedroom, in front of a big mirror, but no matter how much I rehearsed, I rarely nailed it on stage.

Interacting with other people has always been mostly like playing a part on a stage. There’s always a critic telling other people how I failed when the lights go off and I leave the room. Or even worse, sometimes people tell me straight to my face how I’m not really relatable at all as a human being to them. The few times I’ve managed to play the part of a human successfully, I got praise and thought that finally, I’ve cracked the code. It always made me terribly exhausted but I remember how on all of those occasions I thought to myself that yes, now I’ve reached my goal and have learned how to be a proper person. Astonished by how people believed what I said and seemed to like and respect the person I had created, I was floating in a sense of happiness. Now, I had managed to become a person that people could be kind to. I was real. The next day was always horrible, because the denial of my reality was always back and I was too exhausted to keep up the person I had to be and instead had meltdowns that made me want to run away from everything and never come back.

Reality is that most of the time I fail to be a proper person and these occasions, where I succeeded, are few. I remember the firs time clearly, because despite the fact that it was a long time ago I feel the feelings over and over. I was eleven years old and for some reason, I had made friends with a girl in school that was popular and considered cool. How this happened is a quite sad story but let’s leave that for now.

One Friday evening, there was a dance in school and we were there. This girl, T, was used to having boyfriends and because she talked to some of the boys in the year above us, so did I. Writing this is still painful because the memories of total confusion are so vivid, but it needs to be put into words. I need to face what happened because the words of one of the boys are still haunting me.

“Are you new in this school?” this boy in the year above us asked me that evening. I wasn’t new. I had been in this school ever since I started school years back, so I told him no. His question was one of the few things that night that didn’t confuse me. I knew that I had finally become a real person so now this group of people noticed me in a positive manner, because the person I had been up to that point wasn’t a complete person. That was a failure. This night, however, I was managing to follow my rehearsed manners and then I suddenly started to exist. This boy’s question confirmed everything I had figured about personhood. He didn’t ask this in the beginning of the evening, but quite late, when we had talked for a while and I had been playing my part successfully for hours. The timing of his question may sound like a minor detail, but it wasn’t. He didn’t ask me this when we first started talking together with my friend. He asked me if I was new when I had been playing my part for enough time to become a real person.

That night, another boy, who happened to be the most popular boy in school, apparently fell in love with me. Probably more felt like claiming me, but that’s another story. A few weeks later, he became my boyfriend but as expected I failed to be a proper person and it ended in a meltdown and years of tears because of everything I couldn’t be.

Considering how I’m feeling now when I have finally put this into words, I’m wondering if I will be able to finish the story that I need to write. The story that has been too deeply buried because of the confusion and shame it still makes me feel. I need to write it, because the robbing of autistic people’s personhood is an ongoing kind of violence that is harming me every time I’m confronted with it, which is every day.

I’ll end this first part here, burning with fever and shame.

When the System Is Rigged Against You: Social Services and Ableism

Content: This post includes descriptions of ableism, mentionings of violence and an example of ABA

 

A couple of days ago I wrote about me and my partner being reported as bad parents to child protection by my mom. This happened for a number of reasons. One of them was because my mom wanted revenge for me not letting her control me, another was because my mom is not well herself. I suspect early onset dementia but it can be something else too. She has done more than one weird thing (not only to me) altely and it makes me and other people around me thinking that she has an altered sense of reality. However, that’s not what I want to write about.

There won’t be any investigation of us this time, but the thing is that where I live, parents of autistic children are sooner or later reported to child protection. This has increased a lot over the last 5-10 years and is connected to political changes. The country I live in is becoming increasingly hostile to all disabled people, partly as a consequence of political decisions. Different kind of supports are being cut down, healthcare and schools are becoming more and more inaccessible and on top of this it’s more and more socially accepted to be very condescending and hostile towards disabled people in general. Healthcare professionals, politicans and teachers are openly hating us, because it’s almost only disabled people who calls it out. Most other people don’t care about ableism. Most likely, I will be reported again by my kid’s school and at that point they will see that we have been reported before and that will cast suspicion over us.

Being reported as a bad parent to an autistic child isn’t something that happens without a context, and this context is important to understand. A lot of the parents I know have been reported and investigated for demanding reasonable accommodations for their kids in school before sending them there. Others have been reported because somebody who is employed to provide some kind of support doesn’t understand what it’s like to be autistic and thinks that sensitivity to harsh clothes, loud noises, a lot of food and too many people at the same time is a sign of parental neglect. A lot of the people reporting parents of autistic kids are professionals who are supposed to be experts on providing certain services, but who are so misinformed about autism that they do real damage.

If child protection services decide that they should investigate you, the misinformation-pattern continues and turns into something very harmful. Sometimes they actually do know a lot about autism and then things work out okay, but very often they don’t. Sometimes they demand to speak to the child but denies the child accessible forms of communication. If the child can’t answer their questions, they don’t understand that it’s because of the denial of AAC but instead thinks it’s because of parental neglect. Sometimes they decide to observe the family in their homes, meaning that one morning a stranger shows up to sit and observe your morning routines. The fact that a lot of autistic children get extremely stressed out by having a stranger in their home is something that isn’t taken into consideration, because remember – these people lack knowledge about what it’s like to be autistic.

I know families who have been offered “help” from child protection after they have been reported because the kid suffered a burn-out from lack of support and accessibility in school. This “help” doesn’t mean that a social worker goes to school and tries to make things better, which would be real help. This “help” means that the family has to go through a number of classes and sessions on how to be better parents. Once again, this is not designed to teach parents to give good support to their kids as the autistic people they are, but to pressure their kids to go to school by removing everything that they like in life and declare that the kids have to go to school to get it back. Very often it includes toys, communication devices and so on. Yes, straight up ABA style. We are talking about “help” that means that you should deny your autistic child support and instead try to make them pass as more allistic.

Being investigated by child protection as a parent to an autistic child means that either you play along, do what they say and let them harm your kid, or you resist harm and risk having your kids taken from you and put in institutions that will be straight up violent (to be honest, even if you play along and do everything they say, they can take your kid and put them in an institution anyway). It’s a dilemma and as a parent to an autistic kid, I think about it way more than I wish to. The system isn’t designed to protect autistic people, it’s designed to try to make us appear more allistic or to slowly and painfully get rid of us.

When I had published the previous post, I got a couple of comments that I have chosen not to publish. One of them was from a social worker who gave advice I never asked for about how to handle being reported. This included things like to cooperate and say yes to all help offered. Besides from the fact that I have a serious disease myself and can’t show up for appointments and weird classes outside of my own home, this kind of attitude from social workers is a part of the problem.

Where I live (not in the UK or US), both the investigations and the corrective “help” tend to not be very suitable for families with autistic kids and/or adults. It’s actually harmful stuff. Saying that I should just go along with everything means that you say that I should just let people harm my kid and myself. This is not the kind of “help” I need. It’s not supportive.

What I need is people recognizing the power structures in this.

What I need is social workers daring to ask yourselves if your practices are really ethically okay and safe for all the people you put through them.

What I need is for you to listen to disabled people in general, learn about ableism and that you dare to take a stance and work for practises that aren’t harming disabled people.

I don’t need more paternalism. I don’t need social workers showing up in my blog giving me advice despite the fact that I have only given you tiny pieces of information, meaning you are giving advice on something you don’t really have enough information on.