autism

Finding our feet

We’re getting there. By my reckoning we’re approaching the end of week 4, and we’re starting to find things that seem to work. I’m being deliberately vague, as there’s still a voice in the back of my head that says it’s not ‘working’ yet because we’re not doing regular hours on regular days, but I’m doing my best to ignore it. Yesterday for example, we read four chapters from two different fiction books, studied the famous ‘elephants on acid’ research and talked about ethics of using animals for science experiments, and discussed LGBT+ history and in particular how terminology has changed over time (including what has needed to happen in order for those changes to occur, and how they have impacted Alex’s generation) as well as quite a lot about binaries, categorising things, and whether you can represent the human experience using the numbers 1-7. We had a mini session on languages and tried our hands at Welsh, Swedish, German, and Spanish, and designed some cover art for the podcast we’re planning to start to document our Home Ed journey. Today, by comparison, it’s nearly twenty past four and we’ve managed a grand total of one short walk.

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The difficult second week

I’ve lost count of the number of times I’ve sat down to write and re-write this post. This week has been *hard*. I think there’s a belief amongst people who aren’t teachers that the hardest part of the job is dealing with belligerent children all day, but it’s really not. The hardest part is dealing with the systems, the culture, the expectations placed on you by society, the government, whoever it is who happens to be writing education policy that day, or the particular member of senior management who decides a school-wide writing policy is the thing that’s really missing from my Year 8 music lessons. For me, the hardest thing about teaching isn’t the children – it’s the adults. This is apparently true even at the School of Mum and Dad. Alex is not the problem – it’s me.

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Fostering Flexibility

When I was re-jigging my website recently I came across this ancient blog post from 2014, which was called ‘Fostering Flexibility’. I wrote it way before I ever starting thinking about autism in relation to either Alex or myself, but it was very interesting to look back on with this new information, and has been interesting to read again today, in light of my earlier post! Here it is in it’s entirety: “In Alex’s school at the moment they are having a ‘Reading Challenge’. The rules of this challenge are: read to an adult, get the adult to sign your Reading Record, and when you have a signed record you are allowed to put a tick on the chart in the classroom. If you get a certain number of ticks in a week you get some extra playtime on Friday.

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Oh, the tired…

Oh gosh the tired. It’s to be expected, I suppose. Here we are, in the midst of a global pandemic, both kids at home, trying to run a business AND home educate a teenager AND provide on-tap therapy for a traumatised pre-teen who is getting really fed up about being left with dad all the time AND look after myself and make sure I have enough time to rest and recuperate, because by the way my list of health conditions is nearly as long as my arm… it’s feeling like a lot today. In fact, it felt like a lot yesterday too. After two reasonably good days where Alex and I managed maths, English, and BSL together, I could barely open my eyes yesterday morning. Alex was looking equally as thrilled at the prospect of starting the day off with maths again, so I suggested we ditch the plan and do some art instead. Which is all very well and good, and it’s great that home-ed lets us be that flexible, but I’m not sure I could get away with that every day..!

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Day 1

I wasn’t really intending to blog daily about this, but today has been a bit of a shock – in a rather unexpected way. I was completely unprepared for how exhausting *I* would find it. I figured it would be a bit tiring, but I was definitely not expecting it to be three-weighted-blanket tiring. It took me a good half an hour lying under my duvet-and-three-blankets before I could even tolerate anyone being in the room with me – unfortunately for my husband, who chose that moment to try and ask me a question about something. I’m still not sure what he wanted.

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Educating Alex

For the second time in two years we find ourselves at the end of February half term, poised and ready to take on a new type of schooling tomorrow morning. The first time was when we’d made the move out of mainstream, hopeful that an online version of ‘normal’ school would be enough to help Alex manage the varying challenges the education system was providing. At first it was going pretty well; no crowds, no noise, no navigating your way around an environment that was nothing short of sensory hell for my autistic eleven year old – however it soon became obvious that school is school is school, however you access it, and that the problem, in fact, was school.

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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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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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