Low Functioning

I’m having a bad day. I move slowly. I wash my hands and feel my fingers slide over each over, caught in the fascination of how slowly I am taking things in. I usually flash from one thought to the next, but that’s gone now. I am in treacle.

I keep getting stuck on things. My thoughts catch. I want to do one thing, but as soon as any kind of problem in the routine arises, I am lost. I can’t work out what to do next.

Today I had my first meltdown of the year. I think I need a new word for it, these are not the meltdowns of my youth. When I was a child I would disappear. I would become a ball of fury and lose all rational thought. As an adult my emotions take over, but I can overrule the worst of the drives. Sort of.

I start to cry, and then the howls rise within me. I am conscious enough to think, “I look autistic now,” but not conscious enough to find my balance. I am rage and sadness and aloneness.

I keep having to remind myself to slow my breathing. My heart rate is high. I remember as a child struggling to breathe. That terrifying feeling of suffocating as you breathe faster and faster. The breathlessness will linger for hours, and I consciously slow my breathing to keep from that fear. One more thing to keep on top of.

My hand starts to hurt. I look down and see that I’m gripping my phone so hard that I’ve left deep imprints in my palm. I let it go, feeling disjointed from what is happening to me.

The pain in my head starts to rise. It feels as though my skull is caught in a vice and is squeezed. My nose aches. My jaw aches. I am tense from head to toe. I wail. I hate this bit. I hate myself for coming back here. I hate the unfairness of what pushed me over the edge and I hate that I want no one to ever see this side of my autism.

My words start to go; first they came for the adverbs, and I did not speak out, because no one really needs adverbs. Then they came for the adjectives, and I let them go too. Then the in-between words and the other things and the thingamabobs. Gone. Not know talking.

My head starts to feel like it will explode and I feel really alien. I feel like I’m not a part of the world. I feel utterly different and alone. Everything I look at becomes a pattern in my pain; I could have a cup of tea, but the urge to scald myself rose within; I could make a sandwich, but that knife would be too close; I brave a painkiller and throw the rest from me. The feelings are too much to be close to things that could hurt me.

I want to break something. I want to break something that I love. It has to be something I love for it to have the right feeling attached to it. I sit on the floor instead, and my dog licks my face. I don’t let my dog lick my face usually; I am glad she is.

I message a friend who understands and through snippets of poorly phrased text, she sits with me. She helps me let out the safe urges, and keep back the harmful ones.

What caused it? A perfect storm; overdoing things, not enough sleep, too much change and then a final straw. I was recovering from a busy time. I had planned time to recover. I was just beginning to emerge again from my cocoon.

It wasn’t an enormous straw that broke me, but it was big enough; I was told that I had broken a rule I didn’t know existed, and that my actions were wrong and hurtful. I was told I had behaved incorrectly and it had been noted.

Sometimes I forget how fragile my self worth is. I have built it out of so much love and kindness, but it is a tower built of crackling ice, and all it takes is a gust to widen those cracks. My perfectionism can handle fair criticism, but combine perfectionism and a need for fairplay and low energy and see it all crumble, slowly, downwards like an iceberg shearing off a glacier in a nature documentary.

I am happy and healthy in general, I am not depressed or ill. Today I am overloaded and in pain, but it will pass.

Today is a bad day. I am not functioning. I am not doing basic self care or feeding myself or drinking enough. I keep getting stuck in echolalia loops; repeating a phrase or a sound over and over. Sounds and light bother me immensely and I don’t want to be touched.

This past week has seen me soar and crash. I shall rise again. This week has been the most connected I have felt in a long time. I have spent time with wonderful autistic people, who would never have misunderstood me the way that I have been today, and I am enriched by all of them.

I feel shame sharing this. I don’t want people to see this side of me. I don’t want people to think that I’m out of control, or in some way ‘disturbed’. I don’t want people to avoid giving me work because of some ill-conceived idea that it would be too much for me – I am resilient to a fault. I don’t want people to shy away or fear me, but this is the time I should reach out the most. I need to write about this for people to understand. Don’t I?

Don’t I? Don’t I? Don’t I?

Published by Rhi

40 thoughts on “Low Functioning”

      1. Brilliant, agonising piece. Thanks so much for sharing. I totally relate to the words vanishing under high stress, and how the trigger for this episode is the cruelty and coded expectations and guilt tripping from another party. I have been to similar dark wildernesses, and I really admire your ability to express feelings that often seem impossible to contain or name. Great writing.

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        2. Thank you, I’m sorry you share the experience, but it’s good to know we are very much not alone in it – even when it can feel that way 💐

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  3. Thank you for sharing. This helps me understand my son so much better. I find that times I walk on pins and needles so as not to upset him. It’s hard to anticipate what might set off a meltdown, but we all have something similar. Maybe not as exaggerated but we try to understand. Because we are all human with ups and downs. You’re very brave to share with us and there’s no need to for you to apologize.

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    1. Thank you, what a lovely thing to say. Absolutely, we are all human, and those responses are stress responses that everyone shares – we just tend to find more things stressful. The kinder we are to each other, the easier things are 💐

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  4. I’m in tears. Thank you so much for sharing this! My grandson is almost eleven and struggles with speech. His meltdowns are so much of what you descibed. The wanting to break things. The self harm. The screaming rage. The embarrassment when it’s over. I know that if he had the words he would tell a very similar story. Thank you again! Do not EVER feel shame. Meltdowns are a part of you, NOT all of you.

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    1. Thank you so much, it is lovely to know that my words help explain the experience. It is so difficult, but they pass, and there is so much good in the world too 💐

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  7. You definitely should not feel shame in sharing this. I totally get it. I wrote something a while ago but have since realised I was putting a positive spin on it – for the sake of others and for me not wanting to admit that sometimes it’s just difficult. Have another piece written but not published yet because it’s me being a bit down. Thank you for sharing and reminding me I’m not alone 🙂

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    1. Thank you for sharing back. It can be really hard to share stark difficulties without adding something in to make it more palatable. We are okay. This is just how it goes sometimes. It will pass, but that doesn’t make the moment any easier. I think the more we all share about it, the easier it will get 💐

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  9. I think that most ( if not all) people who read your blog will understand you. Your description of what is happening and why it is happening is so clear and well written, it is valuable for us to read because it is so insightful, so thank you for sharing this. I don’t actually experience meltdowns like this myself – one of the big reasons my ‘you’re not really autistic’ inner voice keeps throwing at me…

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    1. We all experience things differently. Don’t let that feed that voice of doubt (it’s a horrible voice). We will have much that is shared and much that isn’t. We are all beautifully individual

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  10. I also “am resilient to a fault.” Thank you for putting into words the fractured reality of a partly-managed meltdown. Also the terrible humiliation of breaking a rule that you did not know existed. Just– Thank you.

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  11. What a powerful depiction of what a meltdown feels like! Thank you for pointing out how function labels can only be used to self describe, because functioning changes based on mood. I am so happy to hear you have a dog who helps you through the meltdowns. Dogs are very intuitive, and know what you need at the time.

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    1. They really are. Yesterday they stayed glued to my side all day long. They clearly felt the tension and wanted to reassure me. It really helped having them about.

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  15. This bit made me tear up, because this is one of my big triggers: ‘It wasn’t an enormous straw that broke me, but it was big enough; I was told that I had broken a rule I didn’t know existed, and that my actions were wrong and hurtful. I was told I had behaved incorrectly and it had been noted.’

    Thank you for writing this.

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  16. Thank you so much for sharing this. I almost cried reading it because I could have written it. Thank you for being brave and letting the rest of us know we’re not alone.

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  17. Thank you for writing such an honest piece. I am only still learning that I have autism and what that means (at the age of 46!). My meltdowns have been happening a lot more the last year and have spilled into self-harming. It was bad enough that I had to be hospitalized for 10 days. They called it just depression, but I am learning, partly from your account, that they are my meltdowns. Next week, I meet with a psychological evaluation person to assess me formally for autism. I really hope they can diagnose me so I can get better help. Thank you for sharing your journey.

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    1. You are very welcome. We are so often misdiagnosed with mental health issues, when actually it’s a stress response to stressors other people don’t share. Good luck with the diagnosis. I hope you have professionals who understand 💐

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  18. We all have bad days. As long as they’re not really bad days, there’s a chance you’ll survive. I have been to that dark place when there were really bad days, days when I wanted to die. I would go within myself to die. That’s how bad it was. Yet something stopped me from taking that irreversable step, because I’m writing this now. I understand.

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    1. I’m very glad you held on. I remember reading somewhere that people don’t want to end things forever, they just want to stop for today. If you can hold on until tomorrow there is so much more out there. Hard times are awful, but good times are amazing. Thank you 💐

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  19. Sometimes it feels like I’m having to punch my words through some kind of barrier – so only the necessary ones get punched through, and it sounds curt and abrupt to those around me.

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