Gap

My relationship to my partner has been better for the last couple of months, and I’m very happy about that. We have sorted some things out and some external factors have changed and that also seems to make our everyday life easier. However, sometimes I experience some sort of gap between us. Like right in this moment.

There’s too much going on this week. Special things for my kid in school (a small concert and a theme day about human rights) that we found out about very late, meaning, we’re working our asses off to make visual material and prepare our kid. On top of that we have some healthcare stuff for me that my partner need to take me too and preparations to be done before that. My partner has done a big part of the preparation work for our kid because I haven’t been well enough today, so he’s kind of stressed out. I feel bad for not being able to do more but I also feel bad because this is the kind of situation that worries me a lot. Everything has too work smoothly according to our plan, otherwise it’s quite likely that things will be chaotic for all of us. The thing is, things never run smoothly. There will be some kind of problem that needs to be solved and I know that I don’t have the capacity to handle it, but I have to solve certain things because otherwise my kid might end up suffering.

This is not how I prefer to organize things, but this is happening mainly because my kid’s school forgot to inform us on time. Still, we have to solve this situation.

I worry. I need to just focus on dealing with my anxiety. My partner thinks that since he’s doing a lot of the preparation work with our kid, I get to rest since I’m done with most of the preparations for my doctor’s appointment. But I’m not resting. I spend my time planning exactly how to deal with every minute of Monday and Tuesday, trying to predict everything because I don’t have room to deal with any kind of demand that I’m not prepared for. In these kind of situations, I always end up over-exerting myself and that means that I also have to plan for being in a terribly bad shape until Friday.

I’m trying to focus on just getting by the rest of the day. Tomorrow, I’ll be drained of energy from just dealing with the chaos that this kind of tight schedule is causing me, and my partner won’t understand why. It will be a huge gap between us but we’ll be too busy and exhausted to sort things out.

 


As usual, I’m not writing this to get any practical advice and comments including advice won’t be published.

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ME/CFS Researchers Don’t Understand Autism

Content: This post includes mentioning of ABA, an autism cure and a lot of ableism.

 

 

Fellow autistic readers, I need your help.

The last couple of months, I’ve been made aware of that some researchers who are originally researching the disease ME (Myalgic Encephalomyelitis), are now interested in autism. This is very troublesome because from what I’ve read, they don’t understand autism at all and their misconceptions can turn out to harm autistic people.

A couple of days ago an article called Treating Autism and ME/CFS: Could One Drug Do Both? was published at the Open Medicine Foundation’s website, and it includes a number of troubling statements. For instance this:

ASD is not chronic fatigue syndrome (ME/CFS) but some similarities exist. Both diseases affect cognition and sensory processing, cause problems with stimuli, cause significant social withdrawal, and are associated with increased levels of oxidative stress, reduced glutathione levels, and a Th2 immune response shift.

The rest of the article goes on as expected, with a number of biomedical facts about autism and ME, but with no further definition or accurate description of what autism really is. From what I can tell, the researcher and/or the person who wrote the article both seem to consider autism a disease defined by a number of behaviors, like mutism and social withdrawl mentioned in the quote above. There’s no sign of any awareness of how heavily autistic people have criticized this understanding of autism. There’s no recognition of all the other aspects of autism, like hyper-empathy. Autism is considered a disease and therefore something bad, and demonstration of less autistic behaviors is interpreted as improvements.

The scores indicated that the children’s social interactions, language, and restricted and/or repetitive behaviors all improved.

Further on in the article, we have parents to autistic children being interviewed about how horrible they find their children’s autism. The parent perspective is of the usual tragedy kind that tends to be standard from Autism Parents, but no actually autistic person is being interviewed in the article.

This is bad. Terribly bad. I fear that the researcher’s misconception about autism and lack of awareness of that historically, attempts to “cure” autistic people have turned into so much harm and will lead to us being harmed again. There are so many testemonies out there of how ABA, the therapy that is still widely used in attempts to teach autistic people to behave less autistic, gives people PTSD. Behaving more like allistic people doesn’t make autistic people less autistic, our brains are still wired the way they are. What it does mean is that autistic people spend a horrible amount of energy trying to fit in and be approved, instead of punished.

I’m devastated by this. I’m autistic and I have ME. I want to be cured from ME but I want to continue to be autistic, because I don’t want to change my personality. For a number of reasons, I’m drained and have very little energy at the moment. I can’t fight this on my own. Those of you who want to protest, please do.

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

 

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.