Autism Functioning Levels

I woke up earlier this week having been dreaming about an argument/discussion I’d had on one of the ME groups on Facebook I’m a part of, and I’ve been meaning to blog about it for a while so now is a good time. Someone posted an image on there which was about invisible illnesses, and included autism in the list. I mentioned how calling autism an illness annoys me (it does) and it turned into an argument where vaccines cause autism, Andrew Wakefield is a hero and I don’t understand because I’m too high functioning.

I don’t understand autism functioning levels. The best explanation I’ve seen is that high functioning means your difficulties get ignored, and low functioning means your strengths get ignored. When it comes to defining it, no-one can give a definitive answer. Some say it’s based on speech, others on ability to perform self care tasks. others on supposed intelligence. When done over the internet, people who can communicate online are normally “diagnosed” as high functioning.

Autism does cause me difficulties, even though I don’t have any associated learning disabilities or epilepsy. Most of it is stuff that no-one really gets to see unless they spend a lot of time with me (or happen to be around at the wrong time). I have meltdowns. During them, I have self harmed (not consciously- it just happens in an attempt to get the pain to stop). I had meltdowns in public until I became too ill to go out.

Meltdowns are scary. They happen when I’m overloaded, and since the world isn’t designed for autistic people, that used to happen an awful lot. As a teenager I’d be verbally aggressive and if anyone tried to touch me, would lash out. Sometimes I’d run away from the situation. As I got older and learnt to internalise it more, it would appear like a panic attack, and I’d bite my hand or scratch my skin or whack my head off the closest wall. I’d hum or scream to try and drown stuff out. Crying and trying anything to make it stop.

Other times I’d shut down instead. Less dramatic looking but just as terrifying to me. The outside world would be distant and feel wrong. I’d be unable to process anything and unable to think. Often I’d be very still (unusual for me – I was in constant motion normally, even if it was just my fingers or feet that were moving). I’d be unable to communicate no matter how much I wanted to. Someone who saw this told me it looked like I wasn’t there, and it scared them because normally I’d respond in some way, even if non verbally.

I’ve been told my meltdowns look like temper tantrums (I was told they were temper tantrums until I found out I was autistic). They scared me because I couldn’t control them. I didn’t want to be acting that way, but I didn’t have conscious control of my body. Both are caused by overload, and it’s like a computer crashing (one where it starts doing weird stuff, the other where it freezes).

I learnt to speak on time. Yet it was never completely reliable for me. I was called quiet or shy as there were times I just couldn’t speak (though it wasn’t noticed as such as when I could I spoke older than I was). The more expectations that were placed on me, the worse my speech reliability got as I had to use the brain power for other stuff. I was often punished for not responding or responding inappropriately and I hated myself as I couldn’t understand why it was so hard.

One area I did excel was academics. This hid a lot of my difficulties as I did well in school. Until I was 16 I had a photographic memory for text, which made learning very easy. I couldn’t manage homework for various reasons but on tests and exams I could perform. Teachers noticed I was clumsy, over sensitive, and that I struggled socially (especially after age 8, which is when my differences started becoming obvious to my peers) yet it was expected that as I was intelligent I’d just learn to be “normal”. It never happened. If I’d not been managing academically I suspect my other difficulties would have been picked up on a lot earlier.

One of the big reasons given to call someone low functioning is not managing toileting independently. I don’t understand the obsession with it. As far as I’m aware I was toilet trained at a normal age, yet as a teenager I started having accidents as I wouldn’t notice I needed the toilet until it was too late (would be called regression by some people). Eventually it was happening frequently enough that I carried spare clothes and a clean up kit whenever I went very far, and kept a spare change of clothes in my locker at college. I’m not surprised that it’s one area the ME made worse (as I have less brain processes to deal with recognising when I need to go, along with now not having control which is probably neurological) so I now wear incontinence pads, which is nowhere near the big deal many people make it out to be. Nor is needing someone else to change them because I can’t do it myself.

I know I’m more able to mimic neurotypical behaviour than some other autistic people, and that (along with being able to type well, and sometimes speak well) is why I’m classed as high functioning. Yet at age 20 I was nearly placed in a care home because I couldn’t live independently (still can’t and even without ME wouldn’t be able to) and I’ve been treated like I couldn’t think for myself when unable to communicate verbally (something that happens to a lot of people with autism and learning disabilities, and is always wrong). The local police thought I should be under a guardianship order due to how I appeared in public when alone. That’s not normally what is associated with high functioning.

It’s mostly luck that I managed to avoid the care home and probably a lifetime of being institutionalised. My social worker found some supported accommodation for me, and my friend Colin provided me with support at night when the workers weren’t there. Vicky moved in with me when I moved out to my own place and we helped each other. Johan moved in with me so that I wouldn’t have to go back into supported accommodation (or a care home) after Vicky moved out and I wasn’t able to even keep myself fed adequately. Louise at college sorted out loads so that paperwork I couldn’t manage got done (along with a ton of other stuff). My mental health problems were partially caused by not being able to cope and being diagnosed as autistic was the start of learning about myself and my depression getting better. Knowing why I struggled helped me to cope with it and either learn ways around my difficulties or know when to accept help to deal with them.

Having severe ME has given me some insight into what it’s like to be more severely disabled, outside of during overload. I’m not always able to understand speech. I’m not always able to communicate (at all when I’m paralysed). It’s incredibly frustrating. Even more frustrating is when my communication isn’t recognised, and at its worst has meant my basic needs weren’t met (I went 18 hours without going to the toilet, having needed medication or having a drink because the care home I was in wouldn’t listen to me if I couldn’t speak, despite being told it happens). I can’t always get my body to do what I want it to do (caused by both autism and ME) and when unable to communicate in any other way, it comes out in violence. Over the years I’ve both gained skills and lost them. Now I rely on other people for pretty much everything, though I’m grateful I can usually type. The times I’ve been treated as unable to understand or think for myself I’ve ended up overloaded, and if I were treated like that all the time instead of occasionally I wouldn’t be able to show what I could do, or learn new skills. I imagine that’s the case for at least some autistic people who are labelled low functioning. Being treated like a capable human being, who deserves the support I need, lets me be the best Danni I can be.

At times my difficulties have been dismissed as it’s assumed that because I can do one thing, I can do something else. At others it’s been assumed that because I can’t do something, I can’t do things I can do. To me it’s normal for people to assume when I can’t speak that I can’t understand. It’s wrong but it happens a lot. I want everyone to get the support they need to be the best they can be, whether that’s social support from friends, help with personal care tasks from carers, or anything else. Every person deserves to be treated as human, no matter what.

(I’m sorry if this is confusing or muddled. I’ve been trying to write it for several days and as most of it has been typed on my tablet, I couldn’t see much of what I’d written. My brain fog has been worse than normal so typing which is normally one of my strengths has been hard.)