I keep thinking about what I wrote the other day, that social interactions are so hard, for so many reasons. One thing that I didn’t mention is that interactions can lead to intimacy, and it can be intense. Too intense to harbor. There’s no way of knowing which interactions that will be too intense, too good, too scary. It just happens, and I’m never prepared.
Honestly I don’t know which force is the strongest, my fear for intimacy or my craving for it.
Intimacy is difficult because I tend to not understand what kind of intimicy I’m experiencing. All I know is that interacting with someone feels good and I want more. I want to be closer. But in which way? That’s not always obvious. Sometimes it’s obvious and comparatively uncomplicated, but all the times when I don’t know what the longing for more of this person is – it scares me. If we met AFK, would I want to kiss you? Touch you? Confide in you? Talk about autism or philosophy? Be comforted by you?
I don’t know. And that scares me. And of course, I don’t know what the other person feels, if they experience any sense of intimacy at all. That scares me even more.
Recently, someone asked me to show myself to them. Not that much, just a piece, but an important piece. So I did. It was scary and energy consuming but oh so good. I want them to ask me for more. I want to ask them for more. But I won’t. This person did probably not understand how affected I was from our interaction and I won’t tell them, because that would be to cross a line I have no intention to cross. I hid behind theories, or maybe theories were what made the intimacy possible. I don’t know. All I know is that the interaction was difficult but felt so good and now I want more.
I don’t know if this is something particularly autistic or not. It makes me feel ashamed and that’s why I’m writing it. After all, this is a place where I write about shameful issues.
Content: This post includes mentioning of an abusive partner, but no explicit details.
I don’t know how old I was the first time I realized that I could feel romantic kinds of love for more than one person at the same time. At the time when it happened I didn’t know that there were other people who felt the same and to me it wasn’t an identity, I just considered it one of my flaws.
A couple of years later I was familiar with the term polyamorous and I had found a couple of people to talk to about it. I had come to the point of articulating the question “How does it come that it’s considered perfectly fine to love more than one child, more than one friend, more than one sibling or parent, but never ever to love more than one person as a romantic partner?” To me, this was an honest question but most people outside my poly community seemed to interpret it as a rhetorical question intended to provoke. I didn’t want to provoke, I wanted answers. I wanted to know what I could do to either stop feeling the way I did, because it was obviously so wrong to most people, or to figure out a way to live with my feelings without hating myself for it.
Because, even though I ended up as a speaker in workshops with such great answers about all relationships being hard and demanding work and what not, I never actually figured out how to deal with myself. I had a girlfriend and after a while a boyfriend too, and it didn’t work. I ended up with the same problems as in most relationships of any kind, but so much worse. Everything that was difficult for me in relationships was intensified to a point that teared me apart. Having more than one partner and taking a totally different direction than the conventional path with one partner at a time meant that I was exposed to being misunderstood by more than one person at the same time. Everything that was weird about me, all the stuff I didn’t have words for, became even more weird and impossible to relate to. Living a poly life with all the unpredictability that came with it made me more lonely than ever.
Today, I think that there were many reasons for this. One was that the girlfriend mentioned above was mean and actually abusive, another was that I didn’t understand myself as an autistic person with sensory and emotional overloads. I need to have plenty of time on my own to process and when I didn’t get this I had so many meltdowns that I never understood. I need to know that my processing time is something that will be respected, something that I didn’t experience in most relationships. At one point I was sure that the poly thing wasn’t for me, that it was just a phase and that I needed to put it behind me, so I did. Or, I tried to.
I’m still able to feel romantic kinds of love for more than one person, but today I live in a monogamous relationship. My partner accepts that I’m polyamorous but I hardly have energy to maintain my relationship with him, and there’s absolutely no practical possibility for anybody else. But, I loved someone else too a couple of years ago and until recently I’ve felt so guilty about it. I had forgot that it’s possible to love two people at the same time and felt like I let my partner down by loving someone else too. And then it hit me a couple of days ago that just because I couldn’t handle more than one partner at a time doesn’t mean I don’t have the ability to love two people.
Content Notion: This post describes detailed practices that are often a part of ABA, ableist treatments for autistic people and ignoring of enbies.
After years of increasing problems with my mom, I’ve told her that I don’t want her to help out by taking care of my kid anymore. This is a very sad decision both for me and my kid, because parts of her time with my kid have been good. However, her lack of respect came to a point I couldn’t take and after many conversations with her, that totally drained me without improving the situation, I gave up. She constantly crosses my boundaries and she has no understanding of what my kid needs and this leads to her causing a lot of practical problems and poor health for my kid, me and my partner. This kind of ‘help’ is something I definitely don’t have room for. There are so many things that hurt us in this, and in this post I will focus on one of them: the brainwashing of Autism Experts™.
When I grew up my mom worked with something completely different, but around the time my kid was born she started to work with disabled (mostly autistic) children. She had no background in working with disabled people at all and I have no clue how this happened, but it did. Her employers have over the years given her some education and this is unfortunately the shallow kind of manuals based on ABA, because ABA-based approaches and ‘therapies’ are standard practice were we live. In the beginning she was worried about that she didn’t have a theoretical framework but after a while, this wasn’t a problem anymore.
During these years my mom has worked with autistic children in different settings. Mostly in schools and short term living facilities. These are the kind of places were this scenario regarding staff is very common, people without experience and education are hired because they seem to fit for some reson. It doesn’t make sense to me, but it’s reality.
The result of my mom’s ‘education’ about autism is horrific. Like most people working with autistic people (or as they say, people with autism), she doesn’t question ABA and its fundaments at all. She is critical to parts of it but she doesn’t seem to even be aware of the assumptions ABA is based on, like that autistic people aren’t real people. Further, she doesn’t engage with autistic adults as sources of information – as people who are experts on autism – and therefore she is completely in denial about how many autistic people who are adults today suffer tremendously from growing up with ABA.
The only reason for why I’ve allowed her to take care of my kid despite this is that she doesn’t really believe that he is that autistic, meaning that she treats him better than the autistic children she works with. Since she is great with him in some ways, I’ve tried to compromise. But, as good as parts of their time together might have been, it doesn’t justify some of the things she does. I don’t trust her, because neither does she respect our agreements, neither does she have an understanding of my child’s needs that is accurate enough.
So, what is my mom’s idea of how to treat autistic children?
First of all, she is very focused on observational behavior in the moment. She doesn’t show any understanding of that the consequences of lack of support and accessibility can surface after the actual situation or after participating in an activity several times. In my network of autistic families (both children and parents), it’s a fairly common trait that autistic people keep up the appearance in school or in public, and then collapse when we come home. There are plenty of testimonials about this delayed reactions out there, but my mom refuses to accept this.
The fact that a lack of accessibility and support consumes a lot of autistic people’s precious energy is something she doesn’t really acknowledge. There are tools to plan activity levels to make sure that there is enough of recovery time, but she obstructs my work with energy management for my kid by not asking beforehand if she can take my kid to an exciting museum or invite people over. She protests when I explain that these kind of activities are demanding and energy consuming to my child.
This brings us to the third point which is that she cares about observational behavior, or how similar to neurotypical it is, and ignores health. Because focusing on observational behavior in the moment and ignoring energy levels and a long term perspective on health means that my kid’s health will suffer.
As a consequence of not paying attention to health, she doesn’t acknowledge symptoms of stress, and instead she’s prone to explaining most problems with a lack of motivation. When an autistic kid is dead tired on a Monday morning and crying because the demand of brushing teeth and putting on clothes is too high, she explains this with that he or she (no other genders exist to her) isn’t being challenged enough. No matter how much information I’ve given her that explains that this can happen when the weekend has been too energy consuming, she doesn’t really believe me.
To some extent she understands the need for predictability, but she doesn’t accept that there is no universal model for this. Autistic people may very often need preparations to get a necessary amount of predictability, but how that is achieved varies greatly between different individuals. I have found ways to prepare my child (and myself) and adjust activities by preparing other people who will participate in them that work great for my kid, but since they are more elaborate than what my mom is used to, she doesn’t respect our ways. This means that she doesn’t fully respect the need for preparations and predictability.
My mom – a monster?
In the beginning of this post, I wrote that my mom lacks what’s often considered an adequate education, meaning she’s not a teacher, psychologist etc. However, the reason for why I’m writing this is because the exact same attitude and ideas are very common among the professionals* I’ve encountered, even those who are trained psychologists, teachers, doctors and what not with so-called proper educations.
As an autistic parent to an autistic child, it hurts me so badly to experience how my child is being disrespected and misunderstood in the same ways as I was as a child – by my own parent. When I see my own words in this post, my mom comes off as a horribel person, and all these issues that I’ve explained here make that true. But as with a lot of people, she’s not only horrible. She can be kind, caring and unconventional in a way that benefits autistic people too. But at the same time she does all these harmful things. This is an important lesson to me and something that I need to remember: people who treat autistic people like shit aren’t evil monsters. They are common people who may have great intentions but that doesn’t make the harm they are causing less harmful.
*I’ve made a correction here, before it was ‘experts’ instead of ‘professionals’. Since I consider autistic people to be the experts of autism, I made a correction.
It’s around five years ago that I fell ill in ME and during these years I’ve had experiences that I never thought I was going to have. One of these is how painful it is to interact with people without chronic illness or disabilities. This is a letter to all of you healthy people without disabilities that I’m hardly in touch with nowadays.
Dear friends, family and aquaintances outside of the chronic illness and disability world,
I know I hurt you when I don’t show up for gatherings, when I don’t want to talk on the phone and when I don’t always reply to your texts and emails. The main reason is that I can’t fit interacting with you in to my very limited life, and most social situations are inaccessible to me. I won’t apologize for that, because the inaccessibility is not my fault.
However, I want to explain something to you. My silence isn’t only because of lack of ability and accessibility, it also stems from the pain it causes me to interact with you. Everything in my life is affected by my disease and my disabilities but to you it seems like I’m supposed to be the same person, just in a wheelchair. But you see, when you talk about what you think are causal, safe subjects, I’m reminded of how small my life has become. I don’t know if the winter was cold because I can’t go outside. I don’t know if I like the new ice cream at the beach café, because I can’t go to the beach and I can’t have ice cream. And I don’t know what I think about the new book from the author I used to love because I couldn’t focus enough to finish it.
When you try to show me that you care about me by saying that you hope I will get well soon so we can get together again, I’m reminded of that there are no good treatments for my disease and that you don’t seem to understand that at all.
When you ask me if I need help with something but demand that we talk on the phone in order for me to get that help from you, I’m reminded of that you don’t get that talking on the phone can make me so ill that I can’t be around my child that day.
Having ME means living in a parallel world, a world that is more bizarre than you can ever imagine. It means having a severe disease that most doctors choose to not know anything about, a disease with a huge stigma created by fraud ‘scientists’. It means not only fighting for my life everyday because of the disease, but also fighting due to the harm caused by fake science and healthcare professionals who believe I’m ill because of ‘false illness beliefs’.
I don’t expect you to understand this, but as long as you don’t respect what you don’t understand I can’t be around you. It’s too painful to be reminded of everything that was taken away from me.