Open Letter To Autism Parents

This post includes mentioning of ABA, puzzle pieces and functioning lables

 

 

Dear Autism Parents,

We need to talk again. At least I want to talk to you.

Just like you, I’m a parent of an autistic kid. Yes, you probably prefer “child with autism”, but for once, let’s not focus on that. Let’s focus on autistic minds, and what your neurotypical perspectives do to all autistic people around you.

I’m a parent of an autistic kid, and I’m autistic myself. This means that every time you express how angry or sad you are about what you think that autism is doing to you, you don’t only assign blame to your child, you also tell all autistic people of all ages around you that you blame people like us. That you blame the way we react to food and noisy environments, how we process information and how we express ourselves, for causing you discomfort and pain.

You are entitled to your feelings, and so am I, and therefore I will tell you how I feel about your behavior.

Just like you many of you, I sometimes seek out other parents of autistic children in an effort to give my kid the best life i could possibly imagine. I might try to work with you to advocate for more accessible schools and healthcare, because just like you, I don’t want my kid to get PTSD just from going to school. However, I’ve realized that I’m not welcome in your world. When you talk about how autism has destroyed your life, you make it very clear that you are blaming autistic people, instead of focusing on ableist structures. What’s even worse is that you center neurotypical, allistic and ableist views and make me feel ashamed for the way I communicate. I know that you are doing this because you are suffering from knowing that your kid is suffering, but I urge you to think of this: When you are promoting ableist ideas, you are making life worse for your kid and all autistic people. It doesn’t matter how great your intentions are – when you call the need for accessibility “special needs”, when you use functioning lables and when you spread puzzle pieces and refer to autistic people as “mysteries to solve” – you dehumanize us. Dehumanization feeds ableism. We will never have an accessible society that respects autistic people as long as we are dehumanized.

But you know what? There’s another option. You have an autistic child, but you don’t have to see autism as a disaster. It’s totally possible for you to direct you anger and grief to the ableism that’s making life hell for your kid. Because you know – autism isn’t a disaster, ableism is.

I know that it’s hard. Just like you I have been fed all those ableist ideas about autism from healthcare professionals. Just like you I was told that I have to put my kid through ABA, “otherwise he could never grow up”. I’ve had doctors, nurses, psychologists and social workers telling me all those lies about how meltdowns are just a way to avoid demands, that my kid has to be taught not to stim and that putting in a lot of time on behavioral therapies is necessary if I want to give my kid any chance of ever having a good life. But the thing is, none of that is true. You have the option of looking beyond ableist ideas and start paying attention to what autistic people are trying to tell you.

If you decide to start paying attention to what autistic people are saying, you will learn that our lives have meanings. That we connect with each other, we have meaningful relationships and we are able to experience joy and happiness. You will also learn that we are harmed and hurt by an ableist world trying to normalize us, and that will probably not be a pleasant reading to you. When you read about all the violence and abuse we experience, remember that you can be a part of putting an end to it. By refusing the ableist ideas that a lot of healthcare professionals are promoting, and instead listening to autistic people to learn about autism, you can make a difference.

It’s your choice.

Sincerely

the uninspirational

 

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Autistic Parenting – Cherising Autistic People and Culture

A bracelet with an orange chewing circle, a yellow fidget spinner and a multicolored tangle.

 

I’ve written about autistic parenting before, both here and on Twitter. Considering how many confusing euphemisms that are commonly used when talking about autism, parenting and related topics, I’ve decided to try to explain what I mean.

As an autistic parent to an autistic child, I parent autisticly. This means that how I’m a parent is strongly influended by the fact that I am autistic AND that my kid is autistic. The autistic parenting, to me, has its core in that we are two autistic people trying to feel as good as possible as autistic people. For instance, I give myself the predictability, visual support, sensory friendly environment etc. that I need as an autistic person, and I give the equivalent kind of support to my kid. Sometimes it’s the same things, like when we both wear head phones. Sometimes it’s created in different ways, for instance,  I use a tangle a lot and but when it comes to stim toys, my kid prefers chewing toys and fidget spinners.

The biggest difference between what I consider autistic parenting and being what’s frequently called an autism parent isn’t that I’m autistic, even though that matters too. The difference is that autistic parenting is about cherishing and appreciating autistic people and autistic culture. I have no interest in trying to make my kid appear allistic and we have no token systems or other ABA-influenced methods. Instead, we have autistic culture. But what does that mean?

As a parent, I introduce my kid to different forms of culture. I got him his first books when he was a baby, I introduced him to a tv show, to different kinds of customs and celebrations, food and so on. When doing this, I try to do it in a way that highlights and celebrates all the autistic culture we have around us. In our home, two of us are selective about food and it’s considered a valid way of being, not a problem. We have visual aids and stim toys in all rooms.  We never have birthdays celebrations with a lot of people at the same time and wearing your softest pyjamas for your birthday party is totally reasonable, because the softer your clothes are the more energy you have to deal with having guests. We have a literal way of communicating and use written and picture-based communication with each other, even if we’re at home and could talk to each other by making noises with our mouths. Predictability and making sure everybody gets recovery time every day is key to our well being, and this is something that permeates how we organize our days.

This isn’t an exhaustive account of what I mean when I talk about autistic parenting, but some examples. To me, it’s important to highlight to myself that our way of living is autistic and as such, it has value. So many people that I have to relate to act as if our way of living is an inferior version of an allistic family, and writing this is simply a way of resisting that idea.

Intimacy without trust

I want to write about forced intimacy. About the so-called intimacy that I might say yes to, because I don’t really have that much of a choice. About situations where the level of intimacy isn’t matched with the same level of trust. Is it really intimacy? Or is it just somebody in a position of power disrespecting boundaries?

I suddenly got a new person performing the disability services I’m granted. One day last week the manager texted me saying that the former person is ill, could she start the introduction with a new person tomorrow?

I wasn’t ready for a new person with such short notice. I was in a really bad shape and that makes me very vulnerable, a single little misstake can make my symptoms worse. But I said yes, because what would have happened if I said no? I would be a burden. A difficult person causing the manager problems. How would that affect the help I receive?

The new person, V, has had two days of introduction. Today she came on her own, even though I had no idea that her introduction was over. I don’t know her. I didn’t even had a phone number to her so I couldn’t text her, which meant I could hardly communicate at all with her since I have a hard time talking most mornings. I don’t want a stranger coming into my bedroom, but I have accepted that I need somebody to bring me breakfast in the morning. But when the manager just sends someone that has been here twice when I’ve been in a really bad condition, that means that I don’t even get a fair chance to get to know her. The intimacy is forced upon me. I didn’t get a chance to say that I’m not ready to have her in my bedroom yet.

Later this week, she’s supposed to assist me before and after my shower. She hasn’t even been here during a shower day yet. There are written instructions for her but how am I supposed to trust that she has understood them? That she will respect that she’s not allowed in my bedroom for 15 minutes after my shower, because I’m half naked putting tape on my hypermobile joints?

There’s something weird about disability services being organized in a way that requires me to comply with an intimacy level without being able to demand a matching level of trust. I guess it’s called ableism.

Involuntarily Closeted

I wrote on Twitter that I’m getting depressed and since depression means that I isolate myself I want to explain a bit about what’s going on. This is probably not very interesting to most readers, but to those of you who know me and wonder why I’m not very good at replying to your messages, this is an explanation. There should probably be a couple of content warnings on this but I’m having a hard time pinpointing exactly what that would be. I can tell you as much as that this is not a nice post. This is a post about identity crisis and the lived experiences of ableism and oppression of queer people.

My life is full of real threats. My future income, the school situation for my autistic kid, all my healthcare contacts and probably something else. These are all things that are serious threats to me and my family, because my health is now so fragile that for instance one Capability For Work-assessment would make me so ill that my partner would have to choose between neglecting me or neglecting our kid. I’m scared to the point where I’ve told my partner that I want an autopsy if I die (and yes, I’ve made official documents about it). I think this could be enough to make me depressed, but that’s actually not the only thing that makes everything seem hopeless.

I’ve been living with this fear for years, and maybe all this accumulated fear is the major reason. Maybe there’s a limit to how much fear I can handle. But there is one more thing, and I don’t really know how to describe it but here it goes:

I feel like I’m living a lie. I don’t know exactly what authenticity is for me, but I know it’s not present in my life. I feel like people relate to me as somebody I’m not, and it feels like a small animal is eating me from inside (yes, I mean that literally. I have an image in my head where a small mouse is nibbling on my intestines, that’s how it feels). I know this experience from before, and that was what made me come out as a person with eating disorders and as bisexual. But it’s like I’m closeted again, closeted to the point where I don’t even know how to relate to other people anymore.

Who am I? I’m a bisexual, queer, polyamorous, autistic enby/genderfluid/womanish with ADHD, Complex PTSD, Myalgic Encephalomyelitis, POTS, Hypermobility Joint Syndrome/EDS. I’m a parent. I’m somebody’s partner.

Who most people see me like? A straight woman, mom, somebody who is constantly tired, a fragile person.

I’m closeted partly because I have to in order to protect my kid, but also because when I try to tell people, most people don’t believe me. My partner believes me but admits to not truly understanding most of my autistic experiences. He really tries but he can’t, and honestly – it hurts. I don’t blame him because he is really making an effort and doing the best he can, but not having my autistic experiences validated by the person I share my everyday life with hurts like hell.

When it comes to being bisexual and queer – it gets so complicated that I don’t know where to begin. I’m bisexual, yes, but when it comes to love… I don’t have any words to explain what I feel. I love my partner very much but I’m not romantically in love with him. For long periods, I avoid books, movies and TV shows with queer characters because it hurts too much to be reminded of the lie my life feels like, but that means feeling like a freak in my own life because I get no representation to mirror myself in. Then, when I listen to an audiobook or watch a movie with queer characters, I fall. I fall hard and end up where I am right now.

This is probably a messy post. The bottom line is that I’m mostly not seen as the person I feel like I am and it’s making me so sad and disoriented that I don’t know how to interact with people. I’m too ill to change my life, but I’m paralyzed by the thought of keeping this lie up for the rest of my life. I feel guilty and ashamed for being so affected by things that are minor compared to the threats I mentioned in the beginning, but the guilt and shame doesn’t make it go away.

It will probably pass.

 

P.S. As usual, please refrain from telling me that “I have to seek professional help”. No I don’t. In fact, I can’t.

I Just Want to Be Safe

Content: This post includes thoughts on safety, fear, threats and abuse related to ableism

 

I hope I’m just having a bad day. Like, I really, really hope that this will pass soon.

Because I’m falling.

In some aspects I’m safer now than I was before, and that’s great and totally terrifying. When I’m finally a little bit safer, the thought of going back is so scary that I almost wish the temporary safety away. Because I can’t go back.

But I will be unsafe again soon. One of the bigger threats is on its way back. There’s nothing I can do about it. In a month, it’s starting again.

I can’t. I can’t do this.

My mind is preoccupied with the idea of ever feeling safe. People think that my highest wish is to not be ill anymore but it isn’t. Because even if there’s a cure for ME one day, I could still be ill again. I will still be disabled. In an ableist world, that means being very unsafe.

I just want to feel safe. I just want to live a life without the constant threat of abuse.