Keeping Up Appearances

I read a post about the problems with calling autistic people “high functioning” and it made me think of how much my life always has been about struggling to keep up appearances. I grew up without any names or diagnoses for any of my disabilities, and not knowing I was autistic was by far what made me suffer the most. I worked so hard on seeming “normal”, because when I failed (which I did, a lot), nobody understood that I needed help, support and accessibility. Instead I was considered weird and punished in different ways. One of the reasons for why I think functioning labels as so harmful is because it becomes a measurement tool to state how “normal”, meaning similar to neurotypical, an individual seems to be. It obfuscates how much work a person might have to do to keep this up and as a result, a lot of autistic people suffer in severe stress collapses. (There are more reasons for why I think functioning labels are harmful, for instance I see it being used as an excuse to treat people terribly bad, just because they are considered “low functioning”.)

So what do I mean when I write that I worked hard to seem normal?

  • I did careful research in books, movies, tv shows, among kids in school etc. about how people moved and talked.
  • I observed people around me and analysed what kind of behavior that led to different outcomes. I didn’t understand it, but I memorized it and spent plenty of time analyzing it.
  • I took all this research and wrote lists on what to say, what to not say, what to do, how to walk, how to dress, how to be in order to seem like a real, relatable person.

Writing this makes me cry, because I can’t believe how hard I had to fight every day as a kid, and still – I failed. I was punished in different ways for everything I couldn’t be.

I was eight years old the first time I started to refuse going to school, because it was too much. I was stressed out. I wonder if people understand what kind of life this was. I worked myself to exhaustion and still I failed, not only in certain areas of life – I failed at being a real person. The lists I made weren’t like a helpful shopping list to remember what to buy, it was an attempt to construct myself as a human being worthy of respect and being liked.

As a kid, I hid most of my interests, because they were considered weird. I had to hide almost everything that was me and my life was a constant battle to just navigate and understand people’s behavior. It felt like I was running a car really fast in the middle of total darkness with no lamps – I had no idea what to expect of anything. I had no idea when I was going to crash into something, I just knew that I would and still couldn’t stop. Because the only way of stopping and protecting myself from collapsing was to stay at home and hide in my room. I did that in periods of time, until my parents dragged me to school, threatening me with that if I didn’t go to school, the police would come and place me in foster care.

I was verbal, but talked to mask everything I didn’t understand. I had so many scripts that worked fairly well, but it got me into trouble too. When I actually did tell the truth, without scripts, people didn’t believe me. My reality simply couldn’t be true. According to people around me, there was no way you could stop going too school as a teenager because you don’t have any mental energy left.

I thought about all the energy consuming research to fit in when I watched parts of the first episode of the horribly bad Atypical on Netflix. We get to see the autistic main character Sam do exactly this type of research, but the show fails to portray how exhausting it is. I think that’s really bad, because this kind of emotional and mental labor seems to be a fairly common, and a very exhausting, part of autistic people’s lives.

A Lack of Trust

My child spends time with a relative on a regular basis. Every month, I take initiative to plan this time with the relative. Then I look through all the different emails with information of plans from school, look through mine and my partner’s shared calendar, and merge it all together in a plan and send to school. I do this to make sure that I, my partner and my child’s teachers will have the same information about what will happen at school, when my child will have time off to go see a doctor or physiotherapist or when he just has time off to be with the relative (school isn’t mandatory for my child yet).

This coordinating and planning takes time and a lot of my energy. Quite often, we find out with very short notice that school has made extra plans to go to a museum or do some other activity that demands preparations to be accessible to our child. The teachers at school are simply not very skilled when it comes to planning and they don’t always communicate well with each other. Every time this happens, it’s a smaller crisis to my child and to me and my partner. Sometimes it means my child can’t join the rest of his group and has to stay at home because necessary accommodations and preparations haven’t been done, sometimes it means that me and my partner to emergency preparations but it ends up stealing a lot of energy from all three of us.

Today, I sent the plan for February and I asked the receiving teachers to please fill me in if I have missed something. After less than an hour I got a reply saying that the plan for the whole semester has already been communicated. My first response was to think “well, yes, but how could I trust that plan when you have failed to communicated changes so many times?” That thought taught me something. My child’s teachers probably don’t understand the disaster in my child’s (and my) health they create when they forget to tell us about demanding upcoming events, and they probably don’t understand that it’s a really huge problem in our lives. I think it’s likely to say that they have no idea how much they have damaged the trust by doing this so many times, and afterwards not taking responsibility for it. Because they never apologize, instead they claim that it isn’t even a problem. This made me realize that they probably have no clue how hard it is for me to take all these fragments and merge to a plan. They don’t realize how a carefully balanced activity level is key for my child’s health, and that their actions have a negative effect on our efforts to balance activities with recovery.

The trust issue is the biggest part of the problem. If my child’s teachers still (after more than four years) don’t even realize how high our stresslevels are when we can’t trust that there will be preparations and accommodations to make school accessible, we will never be able to work together as equal partners. Next year my child is changing school, and it’s time to give up my hope of ever making this a productive partnership with the teachers at this school.

Demanding Verbal Communication Means Silencing Patients

Today I had a meeting with an occupational therapist and a kind of social counsellor at the ME-clinic. They are supposed to help me apply for different kinds of help, like help with household work and shampooing my hair. The clinic they work at had arranged for medical transportation where I could lie down and the meeting was held in a room with a fairly comfortable, real bed for me. Still, this was too much for me. The meeting was inaccessible and the consequence is a boiling brain and an upcoming crash (PEM).

Why? Because participating in a verbal conversation with three people (OT, counsellor and my partner) is in itself an inaccessible form of communication for me. My brain get completely speeded from trying to focus enough and be able to actually articulate what I need them to know. Shifting from me talking to listening to somebody’s response is really demanding. Too demanding, it turns out. I had written notes helping me to remember what I needed to say, and I managed to say most of it, but it was too hard. I don’t really remember what the other people said, just fragments that are unsorted. I have no clear picture of what will happen now, it’s all just a big, messy lump in my thoughts, demanding attention to be processed. That means that my brain is still speeding, more than an hour after the meeting was finished. Meaning, I can’t rest. And before someone gives me the advice of taking notes and recording the discussion, my partner did that for me. However, that doesn’t really help to give me a clear picture now. The mess in my head will continue to demand attention and make it difficult to rest and recover.

This could have been avoided if we could have this chat online instead. Preferably via email so I could take time to process their answers and phrase what I want to communicate. If I could write, my voice could be heard without me collapsing, and I would be more autonomous. But where I live, communication with medical staff is supposed to be done verbally. Preferably in physical meetings, otherwise on the phone. Patients have to talk to get help, and those who can’t talk can possibly have somebody talking for them in some way, but the verbal talking and physical meetings are required, no matter how inaccessible it is. This means silencing some patients, actually quite a lot of patients. Demanding verbal communication has to be recognized as ableism and discrimination, and it has to stop.

Needing help for ME as autistic

I have recently been formally diagnosed with myalgic encephalomyelitis, ME. It has been suspected by several doctors for years but for various reasons it wasn’t until now that somebody had the courage to be clear about it. After a couple of years in the neverland, where I was considered an abnormality wherever I went in the healthcare system (even at the clinic I went to for my hypermobility/EDS), I’m now starting a process of getting actual adequate healthcare for ME. This means trying out some meds and getting help from an occupational therapist to make my everyday life easier.

I’ve only met with this OT once, but so far she seems good. Besides from a wheelchair and adjustments and equipment in my home, she brought up the question of applying for practical help with different things. It’s still unclear what I will qualify for and be able to afford, but I have to start consider practical help with cooking, cleaning and washing my hair. Basically because my partner can’t be both mine and our child’s assistant and work full time at the job that brings an income.

The thought of practical help is overwhelming. Partly because it’s going to be a lot of work to make it happen, but also because I have to accept that I’m ill. I have to trust a new person. I don’t know if I can trust someone enough to allow them in my home without it feeling like a violation of my integrity. Because my integrity has been systematically violated enough during the last couple of years in the healthcare system.

One of the most taxing things about this is me being a self-diagnosed autistic. Since I don’t have a formal diagnosis as autistic, it will be very hard to claim the right to adjustments to needs coming from my autism. I have a really hard time shifting focus. I really don’t have the mental capacity for too many social contacts, meaning that it will be a huge effort for me to have one more person in my life. I can’t have five different people coming into my home and into a very private sphere. A person that is supposed to help me cannot make polite smalltalk to me, because that steals too much energy from me since I find it stressful. I need help with somebody folding laundry and putting it in my closet, but it’s very important they put it in order. I’m picky about food, partly from my ME (some symptoms gets worse from certain food) and partly because I have a high sensitivity to textures and smells. The only reason I’m not underweight is because I’ve stopped trying to eat things that simply feels disgusting, which puts me an a limited diet.

As an autistic, there are things in how I communicate that needs to be taken into consideration in order to get practical help to work, and not stress me out. But in the healthcare system, I’m not open about being autstic and I don’t know how this will work out.

Lonely, liking and sharing

I feel lonely sometimes. As a matter of fact I am quite lonely, because I make myself lonely. I’ve been thinking a lot about this lately. (This post won’t be very well articulated because my head feels like it’s filled with mashed potatoes.)

I know that if I responded more in conversations I would probably have more friends. There are a couple of other things that I theoretically could do that also would result in more friends, but the thing is that I can’t do it. I can manage reading through twitter, but I can’t handle conversations too often, and certainly not with too many people.

I can manage quite a lot of social contacts if they are superficial and I have no obligations, like in a facebook group where I participate in conversations when I have the energy for it. As soon as people get closer than that, I can only deal with a few people. It’s not that I don’t care about people – I care a lot – I just find social interactions exhausting most of the time.

This is shameful to say but sometimes I tend to feel more validated when people click “like” or share something that I’ve written, than when people comment on it. At least this goes for people I don’t know well. Sharing or liking something means “I’ve seen this, but I don’t demand more interaction from you”. Every now and then I read about people complaining that social media is full of too much clicking and too little conversation, but I really don’t agree. I have other blogs, besides from this one, and every time somebody shares or like something I’ve written, it means something to me. Every time. It still does, after having had my stuff shared for five years or so.

I love blog conversations. When I read a post by somebody else, my thoughts starts spinning, and I write something related to it. Then, a couple of days (or weeks, or months), that person (or somebody else) writes something as a comment on my piece. These are conversation with enough space to elaborate on ideas and thoughts, and a kind of conversations that have been a big part in how I’ve changed my mind on certain issues. It has shaped my understanding and I’ve learnt so much through these kind of blog conversations over the last five years.

I guess I’m rambling about this because I’m trying to understand my own behaviour better. I’m just trying to understand what I need and that it’s okay to not want hundreds of semi-close friends.

Update: I don’t mean that people aren’t allow to comment, you are. Otherwise I wouldn’t have made it possible to comment here. I’m just trying ot figure myself out, since I’m not who I thought I was.