The Parent Movement and Self-Diagnosis

Content: This post contains ableism.

 

Recently, I’ve been getting som pieces of hope regarding the movement of parents to neurodivergent kids. I’ve seen autistic parents speak up about the ableism within the parent movement and even though it has mostly been met with silence or total dismissal, I thought that maybe some kind of change is happening. Then I got a reminder of how bad the situation actually is.

Where I live, most parents to neurodivergent kids don’t know what ableism is. There is no organization for self advocacy for autistic or neurodivergent people, only one for people with specifically Asperger’s syndrome and they are very ableist themselves, not wanting to have anything to do with people with people with intellectual disabilities or people with what they consider a too big support need. The big discussion point in media is if autism and ADHD really exist or if it’s just made up by Big Pharma and lousy parents who can’t control our kids. Autism Parents are not used to being questioned by autistic adults and the parent movement is so permeated by ableism that it seems impossible for most of the parents to even imagine advocacy without ableism. Neurodiversity isn’t only misunderstood, most Autism Parents haven’t even heard of it.

The other day, I was also reminded of how the concept of self-diangosis is basically non-existing where I live. Despite the fact that there are multiple factors that will decide if a formal diagnosis is possible or not, even so-called self-advocates often refuse to see the need to recognize self-diagnosis. I came out as a self-diagnosed autistic and was basically told that it couldn’t be recognized and it hurt. It hurt more than I expected. It hurt because even if I wasn’t expecting miracles, I had some hope for this specific context and group of people. When a person in charge declared that they didn’t care at all about all the reasons why a formal diagnosis isn’t possible for all autistic people, I was a bit disappointed.

Because how can you declare wanting to empower neurodivergent people but only those privileged enough to get a formal diagnosis? How can you refuse to care about for instance the racism, ableism and sexism that keep a lot of neurodivergent people from being diagnosed? I don’t understand how anybody can defend throwing some people under the bus in a struggle for empowerment and against oppression.

This is so typical and one of the reasons for why I’m creating more and more distance between myself and most other parents of neurodivergent kids. I work hard on dealing with all my internalized ableism, not only for the sake of my kid but also for my own well-being. Being around Autism Parents and the rest of the parent movement is too much of a reminder of why I should hate myself.

Censoring

Recently, I haven’t been careful enough about hiding details about me and my life. I suspect that a couple of people have figured out who I am (besides from the three people who I have told because I trust them) and even though I don’t think these are people that will hurt me, it means that it may be just a matter of time before more people can figure it out. Therefore, I will probably go through this blog and remove some posts. I won’t be fast because I don’t have the mental energy to focus for very long.

Seeing how vicious people can turn when being criticized has made me think about how much vulnerability I have revealed in this blog and considering that I’ve been criticizing Autism Parents, I need to protect myself.

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.

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.