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.

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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.

What We Do

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.
A red infinity symbol with traces of blue, yellow, green, pink and purple. The background is light blue with a hint of green. The picture is painted to look almost like clouds.

 

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.

Let Me Decide If It’s Worth It

As a person with a bunch of chronic conditions I’m sometimes told by so-called experts that I should do fun and meaningful things, even if it leads to a worsening a symptoms. This is especially common among healthcare professionals who work with people with chronic pain. People who advocate this approach to dealing with chronic pain seem to think that the positive outcome of doing something meaningful will be greater than the pain, and that will make it worth it. Avoiding things that trigger more pain is called avoidance or fear and is for some reason always considered irrational.

I wonder how much damage this idea has done to me. Even though I have never really believed it, it has affected me. It has made me think that there is some piece of truth in it. It has made me harm myself.

Yesterday I met with a friend and her kid. It’s the first time in a year that we have met. Actually, it’s the first time in a year that I’ve met with any friend away from keyboard. The circumstances were made to be as gentle to me as possible: I took breaks and rested, my partner did all cooking and practical stuff, we were outside in the garden to keep the noise level with two kids down. We had a great time. Still, I feel so bad today. My tachycardia is worse, fever is up, pain is increased. My sensitivity to light, noise, movement and moving visual impressions is horrible. I can’t brush my teeth because my muscles are too weak and sore to hold my electrical toothbrush. I can’t be in the same room as my kid. I can’t be outside. I’m isolated in a bedroom with curtains down, needing help with almost everything but can’t tolerate to have people around me.

I had a great time yesterday, but was it worth it?

No. It wasn’t worth it. It wasn’t worth this.

I knew I was going to pay for seeing my friend and her kid, but I thought it was going to be worth it. I don’t know exactly how I was thinking, because I knew I was going to pay by feeling like I am today. There’s no surprise going on here. So why did I think it was going to be worth it?

Because a part of me still can’t let go of the ideas planted in my head by healthcare professionals who have no clue about how bad many symptoms get when I exert myself. I know they are wrong but I want to believe it. I want to believe it because I don’t want to have reached the point where I only see my kid, partner and healthcare professionals AFK. But it seems like I have.

How does it come that so many healthcare professionals seem to think that their job is to make people accept our situations by over-estimating our capacity and pushing ourselves, instead of learning to truely accept the limitations we actually live with? How does it come that these people, who brain-washed me into thinking that harming myself is a good thing, never have to take any responsability?

I know the answers to these questions. I just have a hard time believing that it’s true.

 

(Update: With ME the thing where healthcare professionals push us to over exert ourselves is especially bad because we don’t always recover, we risk permanent harm. I’m well aware of this but just realized that I don’t make it clear in the post.)

The Emotional Harm of Unhelpful Help

Content: This post contains explicit descriptions of situations of harm done by people who are supposed to help. It refers to feelings of fear, vulnerability and unsafety.

 

I’ve been approved for a service where I will get help with some household stuff. Mostly it’s to get breakfast done for me, and a certain amount of tidying, cooking and cleaning, but also to get help with schampooing my hair. At first it was a nice surprise that I was approved for this, but now I’m feeling really bad about it. I can’t imagine how I will ever make this work without me being harmed in one way or the other.

Thinking about how a stranger (or strangers) will enter my home makes me feel like the world is imploding. It’s a specific sense of disaster that I really can’t describe more precise than that it creates an intense fear that feels like reliving all those times people who I’ve been depending on have harmed and hurt me. I relive all those times in one second, with all fear, pain and vulnerability enhanced to a level that I don’t have any mathematical expression for. Because it isn’t only the sum of all fear and pain, it transforms into something else. To an unwanted insight of how unsafe I am in this world. Letting people into my home to help me means giving people the power to harm me again. So far my experience says that this is what will happen. Because when people don’t understand what I need, they harm me in at least two different ways.

The first kind of harm is the practical harm. If I need help with getting something to eat and you give me something that I’m allergic to, you harm me. This is usually fairly easy for people to grasp, but it happens a lot anyway. However, when I need help from a doctor with a medical problem, and the doctor fails to recognize and understand how I respond to meds due to having ME and therefore prescribes meds that lead to permanent harm, it’s usually not recognized. When I need help with special transportation (transportation that allows me to lie down) and the driver keeps talking and therefore creates unnecessary brainfog, it’s usually not admitted to be harm. When the person who is supposed to help me out by cleaning my home creates extra work with coordination and therefore steals precious energy and makes me exert myself more than what I should and I therefore end up with a worsening of symptoms, it’s usually not considered harm.

The other kind of harm is the emotional harm that the practical harm leads to. When I need help with food, cleaning and other household stuff but the person helping me is blaming me for having such unrelatable needs, such as only certain hours of the day, limited talking, only certain food, keep the curtains covering the window and what not, I feel unrelatable. Like my needs aren’t real needs, like I chose them. Like I could get rid of my needs if I only made an effort. It hurts because I’ve frequently been blamed for being such a demanding and difficult patient and person. When I’ve been practically harmed I’ve most of the times not received any apology, but instead been further blamed for the pain someone else has caused me. That makes me scared, because to me that’s like saying that harming me is justified by me being so difficult. It means it will happen again.

The harm that I’ve been subjected to so many times by people who were supposed to help me has made me a very suspicious and scared person. Letting a new person into my home to help me feels like inviting an abuser into my home to attack me.