Let’s talk about Sia

Sadly I don’t mean the ice-cream company. I mean the singer. 

Beside singing she apparently also tries to direct movies, and on the 19:th of November the trailer was released. It got a lot of backlash, because it is about “Zu is newly sober when she receives news that she is to become the sole guardian of her half-sister named Music, a young girl on the autism spectrum.” (IMDB. n.d). Sounds nice right? If done correctly this could have been a nice, heartwarming movie with good autistic representation. Sia managed to fail on the representation front without even having to release the movie. Music is played by Maddie Ziegler, who is not autisitc. 

If a disabled actor is not cast to portray a disabled character, then the movie has already failed with its representation. It doesn’t matter how good the storyline is, disabled characters should always be portrayed by disabled actors.   

The best thing is (/s) that Sia did originally have an autistic actor, but she found the filming environment stressful and unpleasant. So instead of changing the environment Sia hired a neurotypical instead. This is stupid and frustrating in so many ways that I can’t even write it out.  

Another amazingly ironic thing she did was when she expressed her anger over the movie being judged before it could be watched. In a way Sia experienced what many autistics (and other neurodivergents) experience on a daily basis; being judged beforehand.   

She claims to have done a ton of research for this movie, but she did still pair up with Autism Speaks, which is more or less an autism hate group. For example, they have no, or close to none autistic board members. Most of their money doesn’t go to helping autistics and they want to cure autism. In short, they suck and now Sia does too.    

Sia did also refer to autism as a “special ability” rather than a disability. That just screams ableist to me. No one that truly respects autistics would say it gave us a special ability. I’m good at many things, but I’m also limited in many ways. You could almost say it hinders my life. Disables it even.    

Now, I can’t say whether the movie is actually good or not. But I have seen the trailer and from that one minute clip, I can tell that the portrayal of autism seems stereotypical, but I guess it is nice that Music is a girl? It is also a lot of things happening all of the time and that seems kind of exhausting to watch. That’s all you will ever hear from me about the actual movie, I have no intention to see it. 

I do not understand why neurotypicals insist on making movie after movie about autistics played by other neurotypicals and still acting surprised when we say we would have preferred if the actor actually was autistic.  

IMDB. (n.d). Music. https://www.imdb.com/title/tt7541720/?ref_=nv_sr_srsg_6

All about sensory overload

Sensory overload happens when you’re getting more input from your five senses than your brain can sort through and process. Multiple conversations going on in one room, flashing overhead lights, or a loud party can all produce the symptoms of sensory overload.” That’s how Healtine defines sensory overload (over stimulation) and I think it is a very good definition, honestly the entire article was very well written and to my surprise did not just focus on sensory overload in children as it tends to be. No, they actually had helpful tips for adults. I really recommend that you check them out

For me, sensory overload often happens when I have had an especially stressful week, one filled with human interaction that I haven’t had enough time to recover from. The chance is lessened if I know about  it in advance, but it works in reverse too. If I do not get enough time to mentally prepare for events happening, then I will freeze and if possible refuse. If that is not possible, then I will just seem like an asshole instead because my brain will not work and I will be upset. Preparation is the key   

With that said, the symptoms of a sensory overload are many, diffuse and different from person to person. So I thought that I would walk you through (Some of Mine) mine.   

  • A milde sense of nausea, you would not believe how many times I thought I randomly was gonna throw up before I realised the connection. The key to telling the difference, is that overload nausea is at the base of my throat while regular nausea is more all over the place. Also, it’s more of a pushing sensation.
  • An increased desire to stim by shaking my hands and arms, preferably my right arm.
  • An increased sensitivity to touch. Resulting in clothing being really annoying and difficult to wear. An intense hate of my hair and annoyance with my nails. Also, do not touch me under any circumstances. When experiencing a sensory overload, you should limit the sensory stimulations, not increase it with another’s touch. 
  • The feeling of wanting to do something but not actually having the ability to do anything at all, because I can’t focus and I can’t stand things.
  • The need to organise and clean my room. I want my room to be clean because an organised space is good both for my mind and for my sensory input. There is less to look at, and the things to see are familiare and in the right place, meaning that the input is lessened.
  • Light sensitivity. I turn off all the lights.
  • A big desire to be left alone. If I don’t have energy to be with my own body, then I really don’t need another one close to me. Also, I don’t have the concentration to listen to someone, resulting in my replies being very monosyllabic. 
  • Everything is too warm.
  • The, hard to describe, feeling of wanting to stop existing but not really, it is more not wanting to touch anything, like I want to be in a sensory depression tank. Only I know that it would be way too boring and I would not feel good anyway. Even when the world is too much, nothing is too little.
  • Wanting to listen to music only that all music is WrONg. Or just not good enough, sensory overload me is really picky 
  • Stops talking 
  • Feels like crying, but like quietly, prettily, just one tear at a time running down my cheek. Cinematographic crying. 
  • Wants to shower, never clean enough
  • Tense as fuck 
  • Tired 

All of this passes relatively quickly. Generally it happens in the evening/early night and I can just sleep it off. Nowadays it is more of an annoyance than a real problem.    

I have included my original list, written while experiencing sensory overload. You can see how it gets worse as the writing progresses because the writing gets worse and worse. Good luck trying to read it!  

  • A milde sense of nausea, you would not belive how many times I thought I randomly was gonna trow up before I realised the conection. The cle to telling the diffrens is that overload nausea is at the base of my troat while regular nausea is more all over the place. Also, it’s more of a puching sensation.
  • An incread desier to stim by shaking my hands and arms, or the rest of my body.
  • An increasd semsitivety to tuche. Resulting in clothing being really annojing and difficult to ware. A intest hate of hair and much problem with nails. Also, do not tuch me under any sirmunstases.
  • The feeling of wanting do do something but not actually havning the ability to do something resulting in a lot of time spent on the internet frustrated scroling around
  • The need to organise and clean my room.
  • Light sensitivety.
  • Leav me the fuck alone,or a geting reallt tierd by social interatvtions.
  • Everything is to warm.
  • The hard to describe feeling of wanting to stop existing but not reallt it is more not wanting tp tuch anything like I wnat to be in a sensort deprsio tank onlt I knpw that it woould be way tp boring and i would not feel gppd anyy way
  • Wanting tp lstne tp music onlt that all music is WrONg. Or just not good enpugh, sensort overload me is rallt piky 
  • Stops talking 
  • Feels like crying 
  • Wants tp sower, never clean enough
  • Reallt really want tp clean te floor, just no enegty at all. Krävs för mycket aktoverogs emergi
  • Teanss as fuxk
  • Unfocused in body and hyper focused 
  • Ball 
  • Tierd

I don’t want kids, please stop questioning it

I was around thirteen when I realised I don’t want kids. This I understood, as I could barely stand being around people my own age, and not at all being around kids younger than me. This has followed me thru my whole childhood. It has made it somewhat difficult to make friends, but I’ve managed. It also meant that me and my little brother did not have a good relationship. We were both equally mean towards each other. It’s only now, after he turned eleven, that we have started to be able to hang out, without trying to kill or seriously maim each other. My parents are not used to this new development in our relationship and therefore they still try to medel when we jokingly trade insults. 

My dislike for children, even when I was a child myself, made it very clear to me that any child that I would theoretically have, would not be a happy child, possibly even a neglected child. But more importantly to me, I would not be a happy mother. I crave a certain freedom that would be impossible to maintain with kids. I don’t ever want to be that responsible for some little thing that can’t do a thing for itself. This, as I have learned recently, applies to both children and dogs. Apparently, taking care of something helpless, causes me a great deal of stress that takes hours to recover from. Therefore it’s only logical that I don’t have kids. 

This has proven to be difficult for adults to understand. 

A nice bonus picture of the dog that causes me a great deal of stress

Sporadically the topic is raised, and I always make it very clear that I don’t ever want kids of my own. I’m happy to be a cool aunt, I am even looking forward to it. Still, grown ups tend to say one out of two things: either “Of course you don’t want children now, you are only 17” or “Children are delightful, how can you not want them?”. For the second alternative I could explain the reasons listed above, and the first alternative  is a very valid question. I’m only 17, my opinions could change when I grow older. I don’t think they will, but it could happen. The point is, that both alternatives undermines my judgment. Sure, I’m 17, but my opinions are still valid and shouldn’t be questioned.      

Another thing that I have found to be a misconception, is that my disinterest in kids means that I don’t want a family. That is not true. I want a loving partner, and I want to be a hella cool aunt that my future nieces and nephews can rely on. This includes both the children that my brother may have, but also those of my best friend. The somewhat ironic thing is that she’s completely willing to have the kid on her own, while I’m sure I want a partner. I think that the main problem is that people, specifically adults, are so stuck in their ways about how a family should look. And also sexsism. If I was a guy then, I believe, adults wouldn’t try and convince me the same way they do now.

I spent three years of my life just surviving and not living, it’s still affecting me.

My mental health wasn’t the best between the age of 13 and 16, due to several reasons. Now that I’m once more feeling good, I have to relearn how to live, it’s not going that well. Turns out it’s difficult getting out of the habits you had before. I learn every weekend that I actually have energy to spend time with real living humans and not just cats, that means that I theoretically could hang out with friends. But I don’t, simply because I’m still stuck in the same routines. But, like with many other things I’m getting better. I fully believe that eventually I will know that I have the energy to do all I want to do. Until then I will continue to push my boundaries one friend or museum visit at a time.            

Do you know how weird it is to step off the bus on a Friday afternoon and realise that you are actually feeling good? And then realise that just having that feeling is weird? Hopefully you don’t, if you do recognize yourself feel free to contact me, if you need to share. Sometimes I think about how bad I was feeling during that period, and then I get sad for the past me. I’m mourning the time when I was as good as dead. I don’t think that I accomplished anything during those three years, besides schoolwork. That is three years worth of unspent potential, three years of only barely managing to do what was expected of me, three years of not doing anything for myself. And that is just so fucking tragic.

The weirdest thing is that I’m mostly fine now, except for when I’m sad for past me, also when I’m feeling particularly upset over where I live. I do of course still have bad days, days when all I want to do is curl up in my bed and cry myself to sleep. But most of the time when I’m feeling sad it’s due to the past, not the present. It’s not surprising, just because I’m no longer “sick” doesn’t mean that I’m fully recovered, and honestly I don’t think that I’m ever going to be recovered. Those three years are now like a scar, they will always be with me and on occasion it will be bothersome. But bad days are just that; days. They will pass and then I will feel good again. Until then I may cry some, for the 13 year old me that didn’t know that it would get a lot better.

The five steps of coming to terms with one’s disability

Step 1: Realise that you’re different and actually get a diagnosis

  (Or just get a self-diagnose, both are valid, I knew that I was autistic before it was official.)

This is perhaps the easiest and most difficult step. It took me three years to realise that something was wrong* with me. It was three really bad years that I spent feeling like shit and not understanding why. When I finally realised that I was autistic it came as a relief. It wasn’t me that was wrong. I was just different and in an environment that was bad for me. It then took me a year to officially get my diagnosis, but it only took me half a year to change my environment for the better.         

Step 2: I’m autistic but I’m not autisticTM

So I realised that I was autistic, but I also realised that I was nothing like Raymond in Rain Man. Or Christopher Boone in The Curious Incident of the Dog in the Night-Time. Or Sheldon Cooper in The Big Bang Theory and the list goes on like that. They are all white men that is completely socially inept and don’t care about others and that, that’s not me All the autism moms and Autism Speaks doesn’t help. I was nothing like the media portrays us and I didn’t know how to deal with that.   

Step 3: Realising that you are in fact autistic and that there is nothing wrong with that, and that autisticTM  is just how the media portrays us, but still don’t talk about it.

It took me a while to realise that not just I felt like the media portrayed us wrong, and that I was in fact normal autistic. Tumblr was a great help with this, being able to connect and read about the experiences of other persons on the spectrum in an easy way, was great for me. Still, I didn’t talk with any one new about my diagnosis, I didn’t want to be associated with the media portrayal.   

Step 4: Be angry about autisticTM and decide to do something about it.

The fourth step is my favorite, it’s what made me start this blog. I don’t like that neurotypical people are the ones telling the stories of autistic people, it should be us. So I decided to do something about it and started writing.   

Step 5: Be completely confident about yourself and your diagnosis and live your best life.    

I’m not here yet, but I’m getting there. I’m happy about where I’m at, but there is always room for improvement. I still have some things to fix, and some hangups to get over, and I still don’t really speak about autism, but then again, I have never been great at sharing my personal life with anyone. Over all, I’m currently feeling great and it feels damn good.

* My mother thinks that I should changes wrong to something else, but I honestly thought that something was wrong with me, that I was sick or something like that so I will not change it.I don’t think that autism is wrong.