I’m Your Alien

I will never forget the first time I met with a nurse at a clinic for autistic children. Six months earlier my child had been diagnosed  as autistic and a referral letter was sent to this clinic. Now we were finally here, me and my partner. My expectations weren’t that high but I knew they had occupational therapists and I was hoping that they could help us make the preschool our kid attended more accessible. We had a fairly good cooperation with the teachers but it was hard work to do on our own, and I thought that getting some help to increase accessibility and support would improve my kid’s health by decreasing his stress level.

One of the first things that the nurse told us was “These children rely heavily on motivation to learn new skills”.

I froze. I couldn’t pinpoint exactly why but there was something in this sentence that made me highly uncomfortable. Obviously a part of it was the motivation thing, since it’s a central part of ABA and that wasn’t something we wanted, but there was something more that made me react. There was something in how this nurse talked about autistic kids. “These children…” they were the Others. They were not a part of us.

During the rest of our meeting she talked about autistic kids in the same way, creating a distance between us parents and our autistic kid. At this point I wasn’t clear about that I was autistic, but I had my suspicions. I couldn’t articulate it but I was very uncomfortable and somewhere in my head a thought kept repeating itself: You are talking about me. These kids you are talking about like aliens, I’m one of them. I’m one those people you don’t consider a complete human being.

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.

Want people to listen to you? Make sure to distance yourself from your autistic kid

Here’s an interesting (and sad) thing I’ve noticed: As a parent to an autistic child, every time I openly identify with my child, people are considering me less trustworthy. Especially psychologists, doctors and teachers. It’s like I have to talk about my kid as completely different from me, distancing myself from everything autistic, in order to be somebody that people listen to. Isn’t that very a huge problem?

Before my child was formally diagnosed as autistic, I was considered a very good parent. I fought for an assessment, I started making adjustments in our home to make it a more sensory-friendly environment, I read a lot about autism and different approaches and I started using visual aids, like schedules with pictures. Teachers at preschool, my mom and other people treated me like I was some kind of hero for doing all this without any professional help.

When my child was diagnosed a year ago, things started to change. We were offered ABA, but I refused. During this year I’ve read more and therefore I know more and I’ve found more ways of helping my kid feel better. I have deeper knowledge of autism and I know my kid better and therefore I’ve changed my mind a lot. The stereotypes I started out with (like “a person with autism isn’t capable of imagining things”) are replaced with a nuanced understanding. This is great for my kid and for me, but not for people around us.

Since I refused ABA and since I reject a lot of things that are being said about autistic people, I’m losing a lot of allies. Other parents to autistic kids don’t like me anymore and psychologists, teachers and doctors treat me like I don’t know much at all or like I’m just a very nervous mom projecting my own anxiety on my kid.

The biggest no-no is when I openly identify with my kid, as I wrote in the beginning. When I phrase thing like “for those of us who are very sensitive to noises, it’s painful being exposed to a group of people talking loudly”, I lose the last bit of credibility I had left. (Not that I’m openly autistic, but I give some examples of certain things to my kid’s teachers when I’m desperate to give them a better understanding of what the world can be like for autistic people.)

This is probably a part of the dehumanizing understanding of autism that this ableist society has. It’s awful and it needs to change. Actually autistic people need to be listened to. The world needs to start talking to us, not only about us.

How Dialectical Behavior Therapy both helped and masked my autism

When I was in my early twenties I was tired of falling into depression, anxiety and exhaustion over and over again. My whole life had been a bit of a rollercoaster and I managed to get myself diagnosed with emotionally unstable personality disorder (also known as borderline personality disorder) and asked for Dialectical Behavior Therapy (DBT), which I actually got. To my surprise, it worked better than anything I had tried so far. My life improved in many ways and even though the psychologists and doctors claimed that this kind of remarkable progress was unusual nobody ever questioned why. Nobody ever questioned why the most frequent emotion I dealt with in my home assignments was fatigue. Fatigue isn’t considered an emotion in this context but fatigue and the lack of mental (and sometimes physical) energy was without any hesitation what was bothering me the most.

After I had finished my treatment I was considered cured. I didn’t fulfill the criteria for the diagnosis anymore and even though the fatigue was really bothering me, that wasn’t a problem according to the psychologists. I was told that everybody was tired and that I expected to have an unrealistic amount of energy.

During my year of DBT I learned a lot of very hands-on strategies for different situations in life and a sort of inner list of rules for social situations. It puzzled me because for a while I seemed to be almost “normal”. Now I was behaving the way I should. Now I was a real human being, a complete one. Not broken or faulty as I used to be. At this point I didn’t think at all about autism and I didn’t at all connect this experience to the possibility of me being autistic. Instead, I felt ashamed for myself and who I had been before DBT. I could never pinpoint exactly why. I didn’t have the knowledge nor the words to understand it. Today I phrase it as “what came automatic to neurotypical people didn’t come automatic to me”.

Many people will probably consider this a success story. I finally got help and learned skills necessary to live a happy life with meaningful social relationships. The thing is though, that’s not true.

Because I didn’t understand why I had needed to learn what I learned in therapy, I never understood that for people who can do certain things automatically it requires way less mental energy than for me who have to think through every step of a conversation all the time. I didn’t realize that I had a disability and needed strategies, adjustments, accessibility and different kinds of tools to not exhaust myself. Instead, the shame of my past personality made me try to erase it. I worked so hard on being the new, normal me with all my new skills that I had a new breakdown. I passed for normal so hard that I passed myself into a collapse. Because the fatigue only got worse.

I also missed finding other people with similar disabilities for support and I missed the possibility of an identity and a context. I missed the critical perspective that I need to ask myself how much I should adjust my behavior to the norm just to make life easier for other people.

When I finally got an assessment for ADHD almost ten years later, autism was overlooked because I had learned to come across as way too allistic. The skills I had learned in DBT, combined with the shame that had made me study peoples body language etc. made the doctor think that my body language was exceptionally coherent and that there were no signs of autism in our first meeting. The screening and assessment tools were by no means good enough. I passed.

I find it both sad and almost ironic that DBT both helped me to better skills in many areas of life (some of the coping skills for dealing with anxiety for instance worked well for me) but the social skills were practised to perfection which made me push myself into exhaustion again, but now also covering all signs of autism. On the surface it can look like learning new skills is an improvement and sometimes it is. However, sometimes it’s just masking. In this case, the behavioral changes in me turned out to harm me deeply.