Keeping Up Appearances

I read a post about the problems with calling autistic people “high functioning” and it made me think of how much my life always has been about struggling to keep up appearances. I grew up without any names or diagnoses for any of my disabilities, and not knowing I was autistic was by far what made me suffer the most. I worked so hard on seeming “normal”, because when I failed (which I did, a lot), nobody understood that I needed help, support and accessibility. Instead I was considered weird and punished in different ways. One of the reasons for why I think functioning labels as so harmful is because it becomes a measurement tool to state how “normal”, meaning similar to neurotypical, an individual seems to be. It obfuscates how much work a person might have to do to keep this up and as a result, a lot of autistic people suffer in severe stress collapses. (There are more reasons for why I think functioning labels are harmful, for instance I see it being used as an excuse to treat people terribly bad, just because they are considered “low functioning”.)

So what do I mean when I write that I worked hard to seem normal?

  • I did careful research in books, movies, tv shows, among kids in school etc. about how people moved and talked.
  • I observed people around me and analysed what kind of behavior that led to different outcomes. I didn’t understand it, but I memorized it and spent plenty of time analyzing it.
  • I took all this research and wrote lists on what to say, what to not say, what to do, how to walk, how to dress, how to be in order to seem like a real, relatable person.

Writing this makes me cry, because I can’t believe how hard I had to fight every day as a kid, and still – I failed. I was punished in different ways for everything I couldn’t be.

I was eight years old the first time I started to refuse going to school, because it was too much. I was stressed out. I wonder if people understand what kind of life this was. I worked myself to exhaustion and still I failed, not only in certain areas of life – I failed at being a real person. The lists I made weren’t like a helpful shopping list to remember what to buy, it was an attempt to construct myself as a human being worthy of respect and being liked.

As a kid, I hid most of my interests, because they were considered weird. I had to hide almost everything that was me and my life was a constant battle to just navigate and understand people’s behavior. It felt like I was running a car really fast in the middle of total darkness with no lamps – I had no idea what to expect of anything. I had no idea when I was going to crash into something, I just knew that I would and still couldn’t stop. Because the only way of stopping and protecting myself from collapsing was to stay at home and hide in my room. I did that in periods of time, until my parents dragged me to school, threatening me with that if I didn’t go to school, the police would come and place me in foster care.

I was verbal, but talked to mask everything I didn’t understand. I had so many scripts that worked fairly well, but it got me into trouble too. When I actually did tell the truth, without scripts, people didn’t believe me. My reality simply couldn’t be true. According to people around me, there was no way you could stop going too school as a teenager because you don’t have any mental energy left.

I thought about all the energy consuming research to fit in when I watched parts of the first episode of the horribly bad Atypical on Netflix. We get to see the autistic main character Sam do exactly this type of research, but the show fails to portray how exhausting it is. I think that’s really bad, because this kind of emotional and mental labor seems to be a fairly common, and a very exhausting, part of autistic people’s lives.

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Books never asked me questions I couldn’t answer

When I was around ten years old, I read a series of books about a girl in the same age. This main character, we can call her Bee, is based on the author and the story took place a couple of generations back but in a neighborhood not that far from where I grew up. I recognized some of the places described in the books but a lot of things were different too, because the story took place around 50 years earlier.

Besides from being a wonderfully told story, these books gave me something that no other book, person or anything in the whole world could give me as a kid. As a ten-year-old, Bee was the only kid I had ever heard about who just couldn’t go to school. For Bee, school seemed meaningless and the way these books portray depression and exhaustion for a kid were so similar to what I experienced. From what I remember Bee isn’t overwhelmed as much as I was as a kid, but the experience of hopelessness are written in a way that hit me hard. The total darkness that hit me every fall, the impossibility of getting up, getting dressed, eating, going to school – I didn’t know what it was. And just like me, Bee just had enough one day when she was in her classroom and the meaningless of life hit her, and she got up and left. Even though my escapes usually were more dramatic, reading about Bee doing almost the same made me less lonely. Because even though no adult or kid could understand what I was trying to explain, I knew there was somebody out there who could at least imagine it well enough to write a book about it. I thought the books about Bee were pure fiction and that made me think that what I experienced was so weird that it was almost like science fiction. It was something that people made up, nothing that happened in real life. This was not a very nice thought, but I still adored these books.

A few of years ago I read an interview with the author and learned that Bee is very much based on the author herself, and the books based on her childhood. No diagnoses were mentioned but from her description of herself, she could very well be autistic. Even though I’m going to refrain from further speculation, I know from the interview that the episodes where Bee didn’t go to school were something that actually happened to the author. I read this interview when I had just really realized that I am autistic and I had started to make peace with the memories of being unable to go to school as a kid, and it was such a comfort. Like my childhood memories finally started to make sense to me.

I think reading the books about Bee was what made me really hooked on reading and writing fiction. It was through Bee that I found that books were the friends who never asked questions I couldn’t answer, but instead gave me a sense of orientation in a very confusing world.

My Mom Is an Autism Expert and I Don’t Trust Her to Take Care of My Autistic Child

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.

Respectful Parenting in an Ableistic World

Content Warning: This post includes ABA and descriptions of children being abused.

 

 

Yesterday, I saw a twitter thread about parents being abusive to their autistic children. It’s a really important thread about how normalized abusive, ableistic parenting is, and how horrible it is to see parents talking about their autistic children as if they lacked humanity. As a response to this, some people claim “not all parents to autstic kids are like this”, and I want to write about that.

It is somehow true, there are parents of autistic children who aren’t abusive. Parents who don’t do ABA and focus on our children’s well-being instead of gettin them to pass as non-autistic. I want to think of myself as one of those parents. Still, I find it problematic to claim that I’m not one of the abusive parents, because I think it would be dangerous to state that and settle.

Being a parent to an autistic child means that I have to choose to not be the abusive parent every day. Sometimes, I even have to fight for it. Not because I want to be that parent, but because where I live, treating autistic children as dehumanized objects who should be corrected until they pass as non-autistic is what’s recommended by most professionals. It’s the core value that most professionals base their work on, because ABA is considered the only evidence-based approach. Almost every time I’m in contact with medical staff or somebody regarding my child’s school, I’m marinated in this horrible ideology. I don’t do what they want me to do, I know that they are wrong, but I think that being surrounded by this ideology can affect me anyway. As horrible as this is to think of, I think there is a risk that I at some point could be pressured enough by this ableistic society to give in to professional’s pressure. Let me explain why.

If my child’s school would become inaccessible or abusive to the point where he can’t attend school (very common where I live), I will be questioned as a parent. When social workers find out that we don’t practise the abusive parenting that is widely recommended, we could be deemed unfit parents and risk having our child taken away from us. I know parents who have carried their screaming, kicking, panicking kids to school, because if they don’t do that social workers have threatened to take their kids away, which would be even worse. Sometimes in these situations, social workers make parents take parent training courses in ABA-inspired methods, and make the parents practise this with their children in order to get them to school. So-called experts that teach parents to take away everything that their children like, and only give it to them when they have been to school. This is one of my constant fears.

I also think that given the fact that I grew up undiagnosed, I didn’t learn as a child what supporting autistic children means. Nobody helped me when I suffered from autistic burnouts as a result of lack of support and an inaccessible school. Nobody taught me how to deal with sensory overload or the tremendous confusion about everything, all I learned was to always try a bit more and work a bit harder. When I collapsed it was somehow my fault, not that I understood how. This means that I have to work harder now, and not do what adults did to me.

To not end this post in hopelessness, I want to mention what actually made me question the ableistic ideology, even before it was clear that my kid was autistic. Because despite these lousy circumstances, something made me say no and fight for my child already when he was a baby. It was the stories I had read in blogs by autistic adults, before my child was born. Stories teaching me that autism isn’t a tragedy and that meaningful, good lives are possible for autistic people. These stories were scary because it became clear to what extent autistic children are let down by parents, schools and healthcare, but they also gave me a certain amount of hope. For that I’m forever grateful, because the autistic bloggers probably saved me from being one of the abusive parents.

The Faulty Version of a Girl

When I was a kid, me and my siblings used to play card games. Sometimes we got our parents to play with us, which was fun because with more players some games got more difficult and therefore more fun. Usually the atmosphere was friendly, at least I don’t remember anybody being upset from losing. None of us were skilled card dealers, meaning that we sometimes fumbled with the cards. For some reason this always made my dad remind us of that dropping a card while dealing wasn’t allowed back in the old Wild West. This comment was said as a joke, sometimes my dad formed his fingers to look like a gun and pretended to shoot himself in the head when he was the one fumbling. This wasn’t particularly funny but I considered it just another case of boring adult humor. Sometimes though, this was followed by something utterly weird.

In more than one of these occasions, my dad made a comment on how women like me wouldn’t survive a day in the old Wild West saloons. Meaning, women who spoke their minds and refused to conform to the traditional subordinate position expected from women. Women who were loud, wild, didn’t take orders from anyone and who questioned authorities. Women who were disobedient.

I don’t remember how old I was the first time this happened, but I can’t have been more than ten. When I think about my childhood, I have so many memories of this kind of comments from different people. Teachers, parents, relatives, and a bunch of other adults. They all made sure I knew that I was not like girls were supposed to be like. Very often, people made these comments in the same way that my dad did, not as an upfront accusation, but as a part of a joke. People sneaked it in and it always made me confused. If I confronted the person who made the comment I would prove them right. If I didn’t confront them, I was left confused. These comments made me feel ashamed, since I was obviously a faulty version of a girl.