Since I wrote the last post about how me and my kid hang out together, I’ve thought about all those other times as a parent. Although I think it’s really important to write about the beauty of autistic parenting, I also want to be honest about all those times that are just as important (or maybe even more important), but way harder. I’m talking about dealing with inaccessible schools and healthcare, meltdowns, sleeping problems, when other kids are mean to my kid, when our sensory needs don’t fit well together and so on.
To be honest, this is a very difficult thing to write about. It’s difficult in a practical sense, because there are a lot I don’t want to write about with regard to my kid’s integrity. It’s also emotionally difficult, because these issues are issues that I often feel sad and frustrated about. Being an autistic parent to an autistic kid is by no means always easy. Parenting is demanding in general and the fact that we on top of regular parenting have to fight ableism, and I need to deal with all my own disabilities and my disease, means that life is very hard.
I want to write about some of the difficult parts of parenting. Like hyperempathy – how do I help my kid deal with strong and unpleasant emotions when I get so affected by his emotions? And how do I practically handle having to fix everything to make the world accessible to my kid? Not to mention the underlying and really difficult question: How do I deal with the fact that I won’t be able to protect my kid as much as I want from an ableist world?
I don’t know how to write about this yet. But I can be transparent enough to share some of my fundamental rules as a parent, rules that help me navigate when parenting is difficult. These are:
Truly understanding autistic experiences of the world is necessary to be able to give good, respectful support to any autistic person. This understanding comes from spending a lot of time reading about other autistic people’s experiences of the world. (Only relying on my own experiences seems a bit dangerous, I need multiple autistic perspectives.)
All support, help and parenting should arise from the idea that my kid is supposed to get the best possibilities to grow as an autistic person. He’s autistic, he will stay autistic.
I want my kid to feel safe and loved, as the autistic person he is.
Self care, love and having other needs met don’t depend on behaving well. (I rarely talk about behavior as good or bad, if my kid does something that I don’t like I explain the concrete consequences of it. Then we try to agree on another way to do things next time.)
Predictability, having sensory needs met, having visual aids and other support systems are a a way of meeting basic needs. It’s not temporary, we will not aim at managing without it.
Balancing activities to make sure my kid doesn’t run out of energy is cruicial.
Feeling powerless in a difficult situation doesn’t mean that I actually can skip taking responsibility. I might need help to solve something but as the adult, I need to ask for that help. It’s not okay to put the responsibility on my kid just because I don’t know what to do.
My kid will thrive as an autistic person when his everyday life is organized in a way that he can handle. This means that adults around him need to provide enough support to only demand as much of him as he has the skills to deal with. Creating a chaotic situation that for instance demands executive functioning that my kid doesn’t have will just cause stress.
Just to be clear, I have no idea if these are rules that will work for other people, or if anyone even understands what I mean with this. These are principles that I use to handle life when parenting is hard. Hopefully, I can write more about the difficult parts of parenting later, when I’ve figured out how to do that.
A while ago I wrote a post about how I tend to feel like a bad parent, mostly because of the disease that makes me unable to to a lot of parenting stuff. Since then I have thought a lot about it and realize that even though I don’t do a lot of the stuff that I think of as parenting, I do other things with and for my kid. To help my memory along the next time I feel like an absent parent, I’m going ot publish a list of some of the things we do together.
So, here it goes.
We chill in my bed with an iPad/phone/computer each, headphones on and indulge in our interests. Every now and then my kid interrupts me to show something he has written or a picture he’s been drawing.
I tuck my kid in at night. Put on his duvet, make sure all toes are covered (a ritual that he loves). Then we say good night in three languages.
We look at pictures and movies, both from when he was younger and more recent ones. He’s learning how to search among pictures and movies using keywords on my computer and loves it.
We write. My kid writes short stories on his ipad (or sometimes on a computer) and I write my stuff. Recently he started to care about spelling so now he’s asking me how different words are spelled and I have to try to explain different spelling rules in English and our first language.
I create visual supports of different kinds, and my kid is always involved in this. He gives me input by telling me how he understands pictures for instance, so I can create schedules, instructions and illustrations of different kinds that help him.
We make illustrated stories about things that are going to happen, things that have happened and things that my kid wishes for. We use a special app where we combine drawing, pictures, text and record talk.
We read together. The more severe my ME has become, the harder it is for me to read out loud but sometimes I read to him, other times he reads to me.
Stim. We color stim by blending colors in my drawing app (SketchBook), and look at things with nice, deep colors.
This list is by no means exhaustive and as a parent I do a lot of things that are more boring and not obvious to my kid, like planning different things with my partner, preparing for different events, arranged an assessment of my kid’s hypermobility and so on. But the list above is a good reminder of that I actually do spend time with my kid and I am his parent.
My way of parenting doesn’t fit the idea I have of what parenting should be, and it makes me doubt myself as a parent, but I need to remind myself that I do what I can considering being quite severley ill in ME, bedbound and housebound. I don’t parent in a conventional way, but I can give my kid something that I didn’t get: Space to explore and be his autistic self.
Sometimes (almost all the time), I feel like such a bad parent. I’m in bed all day because of my disease and there are so many things I don’t do as a parent. I don’t take my kid to school. I don’t cook. I never take him anywhere, since I can only leave my home during very special circumstances.
But what’s worse than all that is that I can’t handle my own feelings when he’s upset. When certain things happen to my kid, I relive all the times it has happened to me and my world falls apart. When my kid is overwhelmed or when I can tell that he’s not understanding a situation and therefore has a hard time coping, I feel the same way. Sometimes I fake that I’m calm as good as I can, other times his other parent is with him and then I stay in my bedroom and feel like shit.
Because of my disease, I don’t do much parenting at all anymore. I feel guilty and ashamed. I think about my kid all the time and try to solve things like how to find a good school and what not but for too much time, I’m not there.
I’m so sad that I didn’t get a chance to understand myself and learn how to help myself as a kid. Because when my kid is upset, I’m still a kid. Partly because of all the things I never learned as a kid. I didn’t know what it felt like to have your experience validated as a kid. I didn’t have anyone to ask for guidance on how to deal with all the stuff you deal with as autistic. I never felt safe.
I want to comfort my kid when he’s upset but just like me, he runs to his room and slams the door. He doesn’t want to be comforted when he’s too upset and of course, I have to respect that. But since I never allow people to comfort me either, these kind of situations turn into an emotional chaos to me. And I feel lika I’m the worst parent in the world.
Update August 11: Since this post, I’ve done some thinking and partly changed my mind. You can read my following thoughts here and here.
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.
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.