April, Awareness, Acceptance, Anarchy

Okay, I'll be honest and tell you there's nothing about anarchy in this post, I just got bored of the boring stuff. Unless I decide to throw something anarchical in for a laugh. Most likely my use of the "word" anarchical is about as lawless as it's going to get.

I absolutely did not plan to write anything on this topic (awareness/acceptance etc, not anarchy) during April. I actually got a bit tired of posts about autism awareness month, autism acceptance month, people supporting it, people getting cross about it, it kind of put me off Autism a bit, as it were!

BUT as tends to happen, I had a moment which got me thinking.

I had one of those jolly things, a meeting about me, yippee. They usually start with people giving a brief overview of what has happened since any previous meeting. I was happy enough with the first person's summary of our work, detailing how we had made reasonable adjustments and Peggy had worked very hard etc etc.

Then the second person said something in their update which gave me the moment. "Peggy has made lots of reasonable adjustments for me and my odd ways of working and needs." 

Why does that sound odd? Answers on a postcard or in a comment - please do actually think about it!*

That just made me chuckle, while you're thinking about it

It was said in jest and taken as such, yet speaks volumes. I know exactly what that person was saying when they said it (I think!), and I know that they know I will receive that message though it may be passed over by others as a humorous aside.

What that person was saying was, Peggy's needs are not a problem. Yes, she has idiosyncrasies and may act or communicate differently from some other people, but actually nobody is "normal" and it is everybody's job to adjust for everybody else. While we may have made a number of observable differences to our sessions to accommodate Peggy more comfortably, Peggy has also made many adjustments in order to access our (reasonably adjusted) service.

In fact, Peggy does this all day every day in order to participate in the world, because people with her idiosyncrasies are in the minority and would not always elicit respect or kindness were they to walk through life entirely unmasked.

The person was perhaps pointing out that by highlighting the reasonable adjustments we may be making the person feel more "other," more different, more excluded, lesser by reason of us having to do something for them, or wrong because they don't fit the standard.

Of course that was not what the first person meant, and neither did I take it that way. We have a good relationship and they have been very helpful to me, even if I don't agree 100% with everything they say. They were reflecting on how we had worked together in a way that worked for both of us and acknowledging that that is not a given.

But I have to say I was glad of the second voice. It reminded me that while accommodating and including are positive and necessary there is something even more beautiful: belonging. 

I have a suspicion that the second person "gets" me better than any other professional ever has because they have a similar brain. Not on a piece of paper, but just as I find understanding comes much more naturally with autistic people or other neurodivergent people, so it does with this person. My ways do not stick out like a sore thumb to them. I am not baffling or confusing, a mystery to be solved or somebody to be scared of.

In belonging a person is of equal value, equally capable, equally interesting (or boring!). They are not remarkable, and I think that is the key: when we belong we don't have to make extra effort to access the things other people access. We don't feel like a problem and our presence isn't a speciality but a normality. To be a natural part of things is what the soul needs to be well.

It's a drop in the ocean and I wish there were more voices like that in services, but every drop affects the water around it and perhaps it rippled one or two people today - it did me.

I will always belong here

*For a suggestion, maybe one day I'll write about medical vs social model of disability but I can't be bothered right now

I Stole From Anxiety

Outstretched arms inviting a thief. Offering a moment.

The warm weight of trust unreserved. The moment is mine. Close my eyes, dive right in. Sink deep. Our heads together; the meaning of peace.

Warm sun on our skin, soft breeze. Distant noise like a hazy soundtrack: lawnmower, laughter, birdsong, traffic. Warm breath moving miniature lungs.

Every sensation is treasured - to be bottled, if it would. Every muscle suspended in animation to preserve our bubble.

This stolen moment so freely given heals me more than all others.

The Shoes of Despair!

And here's another one - thank you executive dysfunction! I've waffled about executive function before so I won't explain it now, just a little reminder of some of the applications or implications.

The hole is so big you
can see my sock

I need to buy a new pair of shoes. This has been the state of affairs for several weeks, and that's a conservative estimate based on when I obtained the refund for the faulty pair. It's actually more like several months, depending on which precise stage of decay you choose to name "out of circulation," which is a little embarrassing. (The shoes are still in circulation because I have not replaced them...)

The thing is, I buy the same shoes for everyday wear. They usually last two to three years. It was hard enough this time round when I bought them in October, the previous pair having finally worn through to having holes in the soles. They don't sell the precise same ones any more so I ordered the three closest approximations to choose from. None were quite right, obviously, so I ended up with the two I couldn't decide between (why hello again executive dysfunction, lovely to see you!). Each had benefits and drawbacks and was better in a different context. I radically accepted this 😉

BUT THEN! Within a few short months one of the pairs was already dead, even by my standards. Noooo! I ignored the fact for a while, eventually I became conscious of appearing disreputable and it takes a while before I care about that!

Finally I caved and faced the truth. So I emailed the company asking for a refund so I could buy a new pair. Excellent speedy response, no quibbles, thank you Mountain Warehouse.

Less comfy but
more presentable

But, um, that was weeks ago and I'm still wearing the old ones, with a cold toe trying not to tread in puddles on wet days. I had a rough couple of weeks in March so once I surfaced from those I told myself it was only a week until the holidays and I would do it then. It is the last night of the holidays. I haven't done it. I have begun an online search several times and become overwhelmed and suddenly I am going to be faced with work again and have only the shoes I want to keep presentable or the shoes that will probably get me sacked (either for presentation or for health and safety - no open-toed shoes 🤣). Oh dear.

But buying shoes is too much brain. I cannot buy the same for they may die just as quickly. I cannot repeat the pair I have, for I need a pair with the complementary features that are better in different environments. I can't see any other similar affordable ones. Maybe I should branch out and try a completely different type of shoe, but WHERE TO START??? And so I don't. I write blog posts about it instead...

If you see me barefoot you know why 😉

Anxiety

Most autistic people live with frequent to constant anxiety at some level. For some it is relatively mild and/or manageable; for others, incapacitating.

I'm not sure whether any part of it is intrinsic to being autistic, but certainly the lion's share (not sure why the lion gets a share of autistic anxiety 🤔) is caused by living in a world where your brain type is a minority and most environments, systems and social networks are designed for a type of brain that's different from yours.

My anxiety varies wildly depending on all kinds of factors. Some I've figured out, like tiredness, sensory overload and social overload and others I haven't so it appears random. Sometimes I can go days without experiencing more than mild, ignorable anxiety. I can do and enjoy the activities I have chosen and the jobs I need to do - sometimes even things that aren't imminently urgent. At other times I know that the anxiety is more. I have to work at managing it, using different skills to keep calm and either acting the opposite and not allowing it to shrink or interrupt my life, or listening to what it is telling me and scaling things back as needed. And then sometimes it seems unmanageable. I can't do the things I want or need to do, I have meltdowns, shutdowns or panic attacks, and it is hard to recover.

Today I haven't had any of the big moments (yet!), but anxiety meant I did not speak to the person I've been trying to meet for several weeks who was finally in the same place as me. It meant I spent my half hour car journey doing breathing exercises and mindfulness to try and stay calm and avoid spiralling. It meant I didn't look for the person who's selling a balance bike I'd like for Little Peggy. It meant I struggled to concentrate on the talk because I kept having to retrieve my thoughts from anxiety-land. It meant I didn't chat to the person I wanted to catch up with about their recent visits to families with disabled children in Malawi, and whether there's any way I could help or links we could build with my work. It meant I nearly forgot to use my Tangle instead of harmful stims. It meant I had to talk myself into eating my meals. It meant noise was more noisy and stress was more stressy. It meant I didn't tell Mr Peggy how anxious I was until about the fourth invitation, at which point I still said very little about it. In fact talking at all is much more effort than normal - so I've been masking by talking anyway, which eats further into my spoon supplies (amusing metaphorical image...).

And probably a thousand other things that I didn't notice or can't be bothered to list.

Some of today's anxiety was inevitable with things that are coming up in my week. Some could have been avoided or reduced by better communication. It is compounded by memories popping up as usual and bringing difficult emotions.

So yeah. Anxiety. If you know any kind of ND (neurodivergent person - autistic, ADHD, dyslexic, dyspraxic etc) they probably live with anxiety. It might not look the same every day or in every situation: that doesn't mean they're making it up or that they're "acting out," being dramatic or manipulative. Their resources just aren't stretching so far right now. Please be kind. If you want to help, get to know the person and what helps to reduce their anxiety. Just asking is likely to automatically reduce anxiety around you even if there's nothing else we ask - many of my lovely Peggies have done this and it makes me feel more relaxed when they're around. Thanks people!