The Highs and Lows of Functionality

I want to talk about my relationship with the functionality of Autism. This is not based on research. This is not based on how I compare myself to other autistic people, and how we fit on some imaginary scale of usefulness. This is just about me.

I don’t like the term High Functioning. Perhaps it’s partly an instinctive reaction. It sounds snooty. It sounds arrogant. It sounds aloof and cold. And these are all things that I’ve been assumed to be, because I don’t project my emotions the way neurotypicals do.

I don’t like the term because it suggests that I’m on a separate plain to the Low Functioning Autistic. I don’t like it because it belittles how much effort I put in to functioning. It makes it ok to brush my needs off as already dealt with by me.

I don’t like the term because I hear these words used to describe autistic people, and they confuse me.

How do people know? How do you know if a silent person in front of you is high or low functioning?

Talking isn’t an indicator, it doesn’t lay the brain bare for all to see.

Interacting isn’t either. When my brain is at its most active, my interactions shut down, I become silent and withdrawn. My brain is feeding all the space that my senses and projections might otherwise fill.

There’s another dichotomy. When people look at me and see me at my most “High Functioning”, they are not seeing me at all.

When they describe the woman going about her business, calmly chatting to strangers, smiling appropriately, behaving like everyone else, they are not seeing what is there.

That person is an affectation. She is my oily surface, beneath which I’m frantically swimming.

I can only hold my breath and stay under for so long, and when I come up I will be breathless, I will be exhausted.

Is she high functioning? She looks it. She acts it. You can’t see her thought processes and her anxiety.

Or then there’s woman number two. Me at home. In my loose fitting cotton clothing, making paper flower after paper flower after paper flower because the texture and the angles please me. Stopping occasionally to stim. Twitching my nose. Talking in bursts of frantic conversation about abstract thoughts, and then falling back into silence. Pausing to write an article because a thought has occurred to me and I need to catch it before it flutters away into the heaving mass of everything else.

Is she more autistic? She’s effortless. She’s stressless. She’s content in a way that the first woman will never be.

The first is stressed and will need recovery time. The second is content and relaxed and actually being productive. She can respond better to change because there are few external demands. She has processing to spare.

Then there’s the third, the shutdown woman, who cannot talk, who rocks, who cannot think. Who feels like her brain has escaped her.

But the third has only ever come along after too long being the first. The third is a consequence. She is a product of enforced processing.

For me it is simple. The second woman is true. She is genuine and real and she functions on some levels and not on others.

She’s likely to forget to drink anything. She’ll not be making a phone call anytime soon.

The idea that you can quantify my difficulties or my strengths by analysing my behaviours is unhelpful.

By creating woman one, through enforcing behavioural changes, I have not created a High Functioning Autistic. I have made a poor replica of a neurotypical.

If you’re neurotypical then you may make the mistakes that I make when I apply motives to your actions, you’ll make assumptions from your own motivations, from your own experience. And although we do have shared experience, we have lots that isn’t. My motivations are not yours.

It’s not about what I can do, it’s about the price.

My autism is static.

My autism is unchanging.

My autism is my way of processing my experiences.

My autism does not disappear when I’m still, it does not appear when I am alone and my brain is screaming. It is constant.

Autism is a spectrum. You are on it or you are not. It’s an absolute. It will not go away.

What changes is the way you compensate for your difficulties. The better I compensate the easier it is to function in this world built for alien thought-processes, but that doesn’t make them less present.

More importantly it doesn’t detract from the cost of employing them.

If I spend one day as woman number two, then tomorrow is mine to do with as I please.

If I spend one day as woman number one, then tomorrow is eaten by some version of woman number three. Sometimes she’s just exhaustion, sometimes she’s completely lost.

It’s my time. I have a finite number of days.

It’s my life that is being consumed by woman number one. She is not me, but look how well she makes small talk! She’ll even study for it. Find out what you like to watch and watch it, just so there’s common ground to retreat to. Just so she can echo normality.

She will waste her life preparing for pretending to live, when she could be spending it living.

Is that who the world wants me to be?

Published by Rhi

37 thoughts on “The Highs and Lows of Functionality”

  3. Pingback: Functionality – insights | Spectrum Perspectives

  4. I get that either you are in the autismspectra or your not, but is it always the same? I mean is it static or can you see that it has changed over time, or that you have diffrent periods of some sort? Maybe it’s diffrent fore everybody but am despretly seeking any clous I can get right now…

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    1. Autism is the way I see the world. It’s the way my brain works to process what is happening. It’s my automatic reaction to certain things (and lack of reaction to others).

      This has taken a bit of thinking about, just double checking with my earlier self 😊

      Other than growing up and the focus of my attention changing, it has been unchanging.

      That’s not to say I haven’t changed. That’s not to say that the way I interact with the world, the way I think about how I’m processing things, the way I control or don’t control my impulses hasn’t changed.

      I have found that I’m a lot more sociable than I thought I was. I just need to be doing it around people who see the real me. People who I don’t have to mask around.

      So again, the autism hasn’t changed, but I’ve found ways that I can be me and interact happily.

      It’s complicated, isn’t it?

      When I feel controlled by expectations or demands there is always a negative effect. But if I can find my own way around obstacles to do what I want to, then they are minimised.

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      1. Thank you for your replay. Life around here has always been a rollercoster life but lately it has been a extraordinary jumpy one… I think I understand why now. Home is safe normaly but expectations rocks the boat at the moment i think. And unfortunatly I think I’m to blame for some of the rocking… Good thing is I now know how too stop it hopefully. Thank you again for taking your time!

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  5. As a neurotypical who worked closely with autism for a long time, “high functioning” was not a term that was used to describe woman #1 in your example. In most instances it is, but in our program, high functioning was closer to #2. We had non-verbal individuals, we had natural born conversationalists; and in one instance, we had someone who should have run for public office for all the words, promises, and nonsense she uttered daily :-). Functionality, in my program, was reaching your best potential. Some of our individuals could do amazing things but would refuse to apply themselves, thus they were lower functioning. We had non-verbals who never let the world get to them and they would apply themselves to everything and they were high functioning. If what made that person happy was making paper flowers or doing puzzles, there’s nothing wrong with that. If what made you happy was wanton destruction, you were less functional. That was all.

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    1. I see what you’re saying, but what purpose does the term itself actually have? My main objection to it is that on its own, without a signifier, it isn’t quantifying anything.

      You can have a scale of intelligence, or happiness, or productivity. That’s all fine. But if you call it “high functioning” or “low functioning” you are obfuscating meaning and creating confusion. And if it always needs to be qualified then the term is already redundant.

      I don’t have a potential to reach. I just have a life to live. If I don’t live the optimum life for me, that doesn’t mean it was a lower functioning life. Realistically 99% of the population could be re-classed as low functioning 😊

      As you may have guessed, I really don’t like the term 😄 Your program sounds a lot more understanding and practical than most. I like the way it focuses on getting people to a state of content.

      Thanks for your comment. It’s good to know that many understand that conforming to a norm isn’t being “fixed”.

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      1. I too am against qualifiers like that. Currently, I’d be considered low functioning bc I’m barely functioning. But depressed is depressed. So I agree. But in our program (and the way I personally always saw it), that qualifier was necessary. If you had someone considered low functioning, they couldn’t go to all of our job sites. They could talk, follow instructions, etc. What is usually considered high functioning. But if they were more likely to throw a chair through a window, they were low functioning regarding that location. Whereas someone who couldn’t make eye contact, didn’t speak, and screamed if you touched him could be considered high functioning bc they could go to that location and do their job without destruction. And defining it like that really helps families too. Their son or daughter is considered low functioning, and they start to internalize that and agonize over that. But then they function well and do a magnificent job at a particular site and now they’re high functioning in that respect. The parents and families love that, and it makes them feel relief and pride. And the individual, whether or not they understand what high functioning is, know they did a good job. And they can feel proud. That’s the important thing. Pride. Especially for people that the rest of the world seems convinced they can’t feel. Best thing in the world for the individual, the family, and the staff is knowing that an individual can and will put away the jigsaw puzzle or reduce styming just because it’s time to go to a job they love. Or even better: they’re willing to learn subjects they hate to better their skills for that job. Especially when, in the beginning, their parents repeatedly tell you that you will fail because they’re low functioning. Proving them all wrong-that’s something everyone can and should be proud of.

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  7. I agree it’s confusing. I am verbal. My IQ was repeatedly tested at 110. I can dress and feed myself as well as cook and clean house. What I can’t do is financially support myself due to my low-sensory threshold. The trigger sounds of kids and dogs are almost everywhere, and retail is what is pushed in rehabilitation programs-or sheltered workshops (VERY LOUD). I take earmuffs with me when out in public, but even with the worst of sounds softened, I get overwhelmed. I am not someone you take out on a Saturday shopping trip. I also notice that I was less autistic as a child. Everything magnified in adolescence: especially the sound issue and social awkwardness. There are autistic people who are considered “low-functioning” who work, live independently and enjoy social outings. I think it is defined on intellect alone, and that’s not enough.

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    1. Perfectly put. I agree. If you were saying that someone is high functioning intellectually, then at least that has some meaning. It doesn’t mean their lives are any less problematic, it’s specific to the intellect.

      But when you call it high functioning autism, it mainly applies to those with an above average IQ, but implies that their autism is not problematic. When the opposite can easily be the case.

      It’s misleading and doesn’t mean anything or add anything that couldn’t be said more clearly in other ways.

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      1. That’s why I like to say I’m on the spectrum. I saw an illustration about the spectrum. It wasn’t a single line with lf being @ one end and hf being at another, but a color wheel with all the shades and hues of each color. I likened autism traits to a smorgasbord where traits were chosen, not by me, but by chance. Some things were picked from some places (like sensory) and others were left out. I hope that makes sense. If not, I’ll try again.

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  8. Yes, I too find that the ‘use of the expression ‘High Functioning Autism’ and ‘Low Functioning Autism’ is not really fully representative of the degree and variety of strengths and weaknesses, opportunities and threats (remember SWOT) that someone on the spectrum may have in varying aspects of their life. I’m aware that the terms were used a lot in the context of primary health and mental health care provisioning where it was useful to differentiate those who would need a higher or lower care/support package, and that tells you that they were being largely generalistic, now people on the spectrum may be liable to think that they ‘have’ to be in one or the other category, but I think that we shouldn’t use this to try to understand ourselves as those terms weren’t designed or intended for that purpose, a more holistic and realistic appraisal of ourselves may be better if someone could come across a useful framework that might be useful across many different agencies involved with autism as well as with individuals like ourselves, me – I don’t take those terms too literally, it’s better to set yourself your own goals and work towards having a balanced stable and fulfilling life irrespective of what misleading stereotypes and mis-labelling that exists out there 🙂 Let’s all say together, ‘this doesn’t make sense, maybe it’s rubbish!’ 🙂

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  9. I’m glad that functioning labels aren’t used in relation to students at my school… I’d probably be classified as “high functioning” and denied accommodations. And also called lazy. Functioning labels are just so meaningless like… High functioning at what? That doesn’t tell anyone what my strengths and weaknesses are.

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    1. Exactly. There are much better words like “happy” or “productive” to use that are actually descriptive and relevant.

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  10. Answer is NO! definitely no. you just go on being woman number 2 and the others can just fuck themselves (sorry for the language). but it’s true. why on earth would you pretend? so that you can make some small talk, even a few friends, well guess what, i don’t think you even need friends who don’t understand how you feel. and you certainly don’t need friends who categorizes you in some invented bullshit categories on how good you are at pretending to care about them.

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  11. I am reading this thinking this makes perfect sense as to how I think or present myself. I have learned overtime differnt ways to fool people into being normal,but Im not. I am exhausted everyday and some days I can function and other days I am a mess. All this time I thought I was just crazy.And even now that I have the diagnosis I wouldnt dare tell anyone because no one would believe me.

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    1. You are definitely not crazy. It’s exhausting. It’s hard.

      I’ve been amazed by many of the ignorant responses, but I’ve been more overwhelmed by the understanding responses. Some people will surprise you by just how much they’re willing to listen.

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  12. The difficulty is I am a recovering drug addict. That is how people define me. Im either crazy or a druggie.I went to college earned a B.A. degree in criminal justice,even that doesnt matter. I started stimulate use when I was young because I couldnt stay awake,then of course it progressed.My mother would always say to me and others I was born depressed.My son was diagnoised officially at 22months. It was then I began to realize I fit in the spectrum more than he did.I keep thinking I wouldnt be such a failure if others could see the autism in me

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    1. I’m so sorry you’ve been through so much. There has been some research done into a link between alcoholism and autism, so addiction in general could well have a link.

      Not surprising that people find ways of coping and shutting down. A form of self-medication for overload.

      Your son has all the understanding that I wish you’d had.

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      1. Thank you for your kind words. I am misunderstood by many and my inability to communicate effectively has cost my son. For instance in 2010 when he was seven years old he became ill with HSP a vary rared illness. Apparently my behavoir was considerd odd and I was accussed of munchysi-by-proxi, My son was treated horribly and I was blamed for his illness. I took him to the mayo clinic where I was cleared of any wrong doing.But my son suffered because of me at the other hospital.And I have had social services investigate my family over and over because of the iggnorance of school teachers. The allegations are dismissed but the nine months it takes proving innocense is stressful and tiring. My son would be better off with someone who could present themselves in a normal way.

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        1. Your son was not let down by you, he was let down by a society that failed to understand you. I very much doubt he would feel happier with anyone but you. You understand him. Don’t underestimate how valuable that is.

          You’ve overcome addiction, you’ve survived in a neurotypical world. An amazing achievement. Don’t do yourself down. Social services have not found an issue.

          Concentrate on you and your son. You’re the important ones.

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          1. My grandparents took care of me until I was 12. I was taught how to behave in social situations and I was living in a house where it was quiete,calm and knew what to expect.The phone didnt ring after 8pm,evry day was planned. It was my normal and without the love and teaching of how to behave I wouldnt have been able to function as well as I have. I miss them terribly

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            1. Sounds like the perfect set up for an autistic child. I’m sorry they’re not still with you. You can be that stability for your son.

              The past is gone. You can be who you want to be now. We all make mistakes. We learn. We move on. Concentrate on creating that world for your son. It will mean the world to both of you.

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  13. our life is hetic and have I mentioned I have another child? She is 10 years older than my son and has two of her own children,who spend alot of time with us. So its impossible to provide the life my grandparents provided. But I do try. Its funny,my daughter was borning knowing. She said her first word at 7months and could say two word phrases at 10 months old. She was told she could be in the spectrum but I just dont see it in her. She smiled alot was always very social and …no she isnt any the spectrum but definetly has some sort of gift because the child was born knowing

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