Musings

Musings on life, adoption, trauma, autism, and anything else that comes to mind.

Autism, functioning labels, and we’re all on the spectrum

Many people are under the impression that autism exists on a linear spectrum, going from not-at-all-autistic to extremely-autistic (“Oh we’re all a bit on the spectrum, aren’t we?!!”).  Autistic people are given labels that put us on a scale from ‘low’ to ‘high’ functioning. Most autistics I know aren’t that interested in the idea of lining ourselves up in order of who is the ‘most’ autistic (much as we may enjoy a nice orderly line) so effectively these labels are just a shorthand for professionals. This idea of graduated difficulties can be useful in some situations, and is essential under a medical model – for example an A&E nurse responsible for triaging patients needs to know that a broken leg is more severe than a sprained ankle. However, is it really appropriate to apply the same kind of scale to something that is simply a difference in how we are wired? Is there a risk that the use of functioning labels could mean people who are seen as ‘high functioning’ have their struggles dismissed or ignored, and people who are ‘low functioning’ are presumed incompetent and unable to communicate, when that may not actually be the case?

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Autism diagnosis – one year on

I set out writing this post with the intention to reflect on the last 14 months or so since my autism diagnosis; however I’ve found a lot more to reflect about than I had expected(!) so this is going to end up as a series of posts, each with a particular theme. (Or more likely, it will be one post and then get forgotten.) This particular post is about how my diagnosis has helped me to manage the social interactions in my life, and reframe some of the negative beliefs I held about myself as a person. Since being diagnosed with autism just over a year ago, I’ve been fairly open about it, both in my online life and my ‘real’ one. I feel the need to talk about it in a way that I never have with sexuality, mental health, or other aspects of my personality. Autism has become part of my identity.  

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Autism and the body-mind disconnect

This is something that’s been on my mind for a while, and I’ve really wanted to sit down and get my thoughts together on it. When I first heard about the body-mind disconnect that is experienced by some autistic people, it all sounded a bit strange – but gradually I started to realise that it explained a lot of things that I’d been unable to fully articulate about my relationship with my body.  Ever since I was a child I’ve struggled to get my body to do what I want it to do, to feel how I think it should feel, and to look how society deems an attractive body should look like. I’ve always blamed it on being overweight, and that definitely contributes to many of my issues, but it doesn’t quite tell the whole story.

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Another sort of self care

Self care is a topic that’s often dismissed – whether it’s gently mocked as ‘ladies who lunch’, all about getting massages and painting your nails, or whether it’s a simple belief that “I don’t have time for that”. I used to be one of those people – I thought self care was a nice idea, but I couldn’t see how I could fit it in to my life. I’ve written about self care quite extensively in my book, as learning to look after myself as well as Tickle was the single biggest thing that turned our adoption around from being on the verge of disruption to the relatively ’normal’ family life that we have today.

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Triggers

The subject of ‘triggers’ has been on my mind a lot today. We all have triggers, things that just ‘push our buttons’, or ‘set us off’. I spend quite a lot of time trying to work out what has triggered certain behaviours in Tickle or Alex, but unusually for me today, it’s not triggers for my children’s behaviour that I have been thinking about – it’s my own. When you’re a parent to a traumatised child, day to day life can be somewhat emotionally fraught. Some days I’m quite good at riding the wave, but other days less so and on those days there are a couple of things that will instantly flip my switch. Borrowing my husband for an example, one of his main triggers is when Tickle goes a bit loopy and starts to chase the cat.

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Reigning in the emotional brain

This morning, as usual, I was woken up by Tickle shouting at Husband. When I heard Husband start to shout back, I thought I’d better get out of bed. Tickle had thrown a toy at Husband’s face (again) – though thankfully this time it was only a small one and didn’t do any actual damage. Tickle came to sit with me in bed for a bit. He didn’t like this much, which he chose to communicate to me by throwing his glasses on the floor, and then shouting at me because he couldn’t see. I got back in to bed and ignored him until he’d calmed down a bit. We had a chat. We talked about what was worrying him – school, as it turned out, or more specifically, one boy at school who he is worried about. This particular boy actually left school at the end of the summer term, and I’ve spent the last few months trying to help Tickle understand that he isn’t coming back ‘for ever and ever’. However, it seems like it hasn’t quite gone in yet, and he’s still pretty anxious about whether this boy will hurt him. This flowed naturally in to a repeat of the conversation we usually have following an incident like this: “It’s OK to be worried, but it’s not OK to hurt people.”

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Taking the mask off

My autism diagnosis is still a really new thing for me, but I’ve been feeling more and more over the last couple of weeks that I wanted to tell people about it. One reason is because there are quite probably tens of thousands of people like me, who have no clue that they’re autistic, and the only way that is going to change is by amplifying autistic voices and providing an alternative to the ‘awkward geeky guy’ stereotype that most people associate with the word ‘autism’. The other reason though, I think, is because I feel this real need to live my new life as authentically as possible. My life since diagnosis has been a series of lightbulb moment – sudden realisations that explain so many different aspects of my past. I do feel like a different person. I feel calmer, lighter, more aware of myself. I’m enjoying getting to know the person under the many layers of masking that have built up over the last 38 years.

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Navigating the world of work

I have had a very mixed experience with the world of employment. I often feel like I haven’t really achieved the things I’m capable of, haven’t got where I want to be in my career. Where I’m capable of. I don’t quite mean that I haven’t reached the pinnacle of my career yet, I mean that I, as I am today, right now, ought to be doing better than I am. I’m pretty sure this is not a uniquely autistic thing, but there are a few things I need to unpack about why I’ve struggled in work, so that I can move on and do better. I also really want to do this in a balanced way, so I can work out what I do well, as well as what I struggle with.

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Diagnosis

I am taking part in the Instagram Chronic Illness January Photo Challenge, and I thought I’d try and write a few blog posts to go along with the pictures I’m posting. Today’s theme is ‘Diagnosis’. One of my main motivations for writing about my experience with autism – aside from using the process of writing to help me work through my thought process – is to provide another voice for women who have lived a significant portion of their lives without knowing that they’re autistic. I’m certain I will know other people who are on the spectrum, but haven’t realised it, and if writing honestly about my experiences can help someone else make a connection with their own life then I feel I ought to do it.

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The Christmas Ratio

Over the Christmas holidays so far, I reckon our ‘nice bits’ to ‘hard bits’ ratio is probably about 70:30. Possibly slightly better, if you take in to account the fact that the hard bits are no where near as hard as they used to be. Last year’s Christmas ratio was about 20:80 at best I reckon, and looking back at the blog from this time last year it seems T was going through a bitey phase as well. The worst we’ve had this holiday is hitting, and even then I think it’s only been once or twice. Gosh, it’s so weird writing that, when I think back to posts I’ve written in the past describing the aggression and violence that was happening multiple times per DAY, for anything up to a couple of hours at a time.

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