Things I have learnt in 2016

I’ve never been the kind of person to go on for the endofyearroundupsocialmediastatusupdate thing. But this year has been different, and besides, I’m blogging now.

Just over five months ago, I received my formal autism diagnosis. But it feels as if this whole year has been about autism – my own, and that of my daughter. For the seven months prior to my assessment, my eyes were gradually being opened. 

So here are just a few things I’ve learnt (by no means exhaustive) in this turbulent, traumatic year.

So yeah, I’m autistic.

I learned this for myself in the early part of this year, and had my conclusions officially confirmed in July. Celebrity deaths, mass genocide, the rise of fascism, Brexit, and Trump aside, that’s kind of what this year’s been about for me. It’s a pretty big thing, after all those years of bewilderment. I felt it important enough to write about, anyway.

I can write.

I mean, yes; I always knew I could write a bit. But this year, my investigations into autism, my diagnosis, and the resulting self-reflection, have given me oh so much fuel to get my words out into the world. I like to think I’m pretty good at it, and it feels like I’m getting even better.

There’s no harm in a little judicious (or even brutal) editing at times.

Brevity is not one of my strong points – either in speech or the written word. But I’m working on it. And I’m learning. And improving.

Writing can be used to make real change.

Of course I know this on one level; I’m an English graduate. I’ve read an awful lot over the years.

But over recent months I’ve had people contacting me directly as a result of my blog – asking for advice, telling me how much my words have meant to them, how much better they now understand their partner/spouse/child/friend, how much they recognise themselves in someone else’s story and how validating this feels to them. People have told me that my words have made them think.

And, of course, I owe a debt of gratitude to all the bloggers whose words I read when I was investigating autism for the first time. Had I not seen those personal accounts, I never would have seen myself through a new lens. And I never would have had the chance to really understand who I truly am.

The more the voices of autistic people are shared, heard, and amplified, the more there is a chance for real positive change to happen. Writing isn’t the only way this can, or should, happen, but it’s still important.

I don’t have to lament the loss of past opportunities to be creative.

Okay, so I gave up fine art after GCSEs, despite it being a lifelong passion from the age of about three onwards. I’ve always had a fear of committing my musical ideas to a recorded form, resulting in a lifetime of forgotten songs and song fragments swimming in my head until, eventually, they get squeezed out by everything else my brain is trying to deal with.

No matter. No point in regrets. I feel compelled to write, these days. Who knows where this will take me?

Being open about my autism is the right thing to do.

For one thing, it’s helped hugely at work so far (I know not everyone shares my positive experience here). I’m continually surprised by how much my general stress levels have reduced now I have the weight of diagnosis off my mind, and now that I’m able to explain my situation, and my needs, somewhat better to my colleagues.

Not everyone will feel the same as I do about being “out”, and that’s fine. Not everyone’s circumstances make this feasible, or desirable. I’m very, very lucky. But for me, it feels imperative that I’m out there, visible, challenging people’s notions of what it means to be autistic. I hope that by doing so, I might be able to help others like me.

I have some absolutely bloody wonderful family, friends, colleagues, co-workers and acquaintances.

Here, again, I’m lucky. I never posted the great big, coming out, “hey everyone, I’m autistic!” status update on Facebook or elsewhere. But a lot of people know about my diagnosis. It’s not something I ever intend to keep secret. And so far, although it’s early days (big caveat, there – there may be the odd dark day to come in future. Who knows?), I’m not aware of many folks that have mentally or physically excommunicated or disowned me. I think it helps that many of my friends, colleagues, and family are equally as weird as I am, albeit not all of them autistically weird.

And on that note:

Weirdness is normal.

Weird people might not make up the majority of humanity. But there are loads of us. And that’s rather interesting and wonderful. And some aspects of my weirdness are beautifully, elegantly, wonderfully explained by my being autistic. Other elements of who I am are weird for other reasons, and that’s also cool.

Autistic people feel empathy.

That would appear to be a weird thing for an autistic person to write, right?

The reason this was news to me was because I’d spent years reading the odd clinical account of autism, seeing the odd mainstream media representation here or there, without ever recognising myself in the depictions. So often, I’d read the words “lack of empathy”. I couldn’t possibly be autistic…could I?

I’m abysmal at reading people right in front of me, in the here and now, but with a little distance, my empathy goes into override. And this year I’ve learnt that, amongst autistic people, I’m far from alone in this respect.

Understanding my own autism helps me to be a better human.

I’m not saying that being autistic makes me a better human. No single group of people can claim superiority in that respect – there are arseholes all over the place, of every neurotype. But in the time I’ve been writing my blog, interacting with other bloggers, communicating with folks on twitter and elsewhere, and since being formally diagnosed as “different”, I’ve developed a deeper understanding of what it means to be different, and how the many types of difference intersect and affect people’s experiences, life choices and opportunities (or lack thereof).

Again, I’m still learning.

There’s a whole wonderful community of autistic people out there.

And despite the fact I only know the majority of these beautiful individuals online, I now consider many of them to be true friends.

I feel a duty to help others like me.

I can’t stand by and let other undiagnosed autistic people – especially girls and women – fall through the cracks. I have limited capacity to help, it’s true; I have a full time job, a young family, and precious little downtime to keep myself healthy and happy. Nevertheless, I feel it to be something of a duty for me to educate, explain, and support in whatever small ways I can.

The world is a somewhat terrifying place right now.

But I still believe in seeing the best in people, and in tackling prejudice, hate, violence and abuse through dialogue, understanding and compassion. It won’t achieve everything, I know, but for me, personally, it’s much healthier to behave in this way.

And whilst I’m at it:

I need to take better care of myself.

I am getting better at saying “no”. I’m learning to let go of the guilt I feel at not responding quickly enough to messages, sacking off a social occasion, and general not doing as much as I used to, because I recognise the need to recharge and to protect myself. Now I have a confirmed reason for why I often feel this way, it’s much easier. Being kind to myself, first, leaves me in a better position to be kind to others.

Again, I’m still learning.

I’m not broken.

Certain aspects of my autism can at times be disabling. And the process of assessment and diagnosis led me into a tough period of questioning, self-scrutiny, and self-doubt. But I have many, many strengths. I’m realising this more and more as time goes on.

And my way of thinking, of feeling, of being, is every bit as valid as anybody else’s.

Information and resources page revamp

A quick update: I’ve had a go at reorganising, categorising and systematising the additional resources on this site, with the hope that I’m therefore able to reach, inform, and help more people out there who might need this.

I like to respond to individual messages (and these days I get quite a few, which I’m happy to receive!), but at the same time I’m a very tired and busy full-time employee, and parent of small children, on top of experiencing all the overloading that comes with my particular neurological profile, and so I have very little spare time and energy!

At times I need to look after myself, so providing a permanent place for useful information and resources allows me to provide signposts for times when I can’t tailor lengthy replies to personal messages.

The ‘information and resources’ page has now been divided into an introductory page, a page of links to sources of basic general information, and a specific space for links to resources by and from #ActuallyAutistic people.

Also added is a new section on the specifics (from my perspective) of getting assessed.

I hope people find this useful! I’ll keep adding stuff as and when I get the opportunity.

Head Music

I’m always fascinated by how different my speaking voice sounds on recordings, compared to the way I hear it in my own head. I used to cringe in horror at how unlike me it sounded, but I’ve seen or heard enough footage of me speaking over the years to have eventually become resigned to the fact of how others hear me, however much I myself dislike it.

At some point I’d love to read up on the science behind the proximity of the vocal chords, lips and tongue, to the various sound-box features of the skull, and all this to the ear – and the effect of all of these on how we hear own voices ‘live’, in real-time. But for now, my fascination is pretty abstract.

Using my head and its various physical contents to entertain myself sonically is something I’ve done for as long as I can remember. Sometimes I hum, and I’m intrigued by how the sound is modulated by circumstances: recently I’ve had a terrible cold, and was struck but an observation that the gloopy stuff clogging my nose, throat and sinuses had turned my hum into a sound somewhat akin to a bassoon or – at the higher end of my register – an oboe.

Since pre-school age my teeth and jaws have provided me with ready access to a miniature internal drumkit. A certain scraping of the teeth produces a snare drum sound; various clenches, bites and taps of the teeth can be made to sound like kick drum, floor and rack toms.

While I’ve added the odd tongue click or tap over the years for more ‘dancey’ beats, cymbals have a fricative quality that strays too close to the voice, and so I avoid them: I’ve always had the instinct that ‘dental drumming’ was something I needed to do discreetly – unlike whistling, humming, or singing a tune (all of which I will happily do in public without embarrassment), it feels just that little bit too eccentric to indulge in too obviously. So I combine the dental drumkit with a ride, crash, and hi-hat played through the speakers of my mind’s ear.

Playing tunes in my head isn’t just about the physicality of the dental drumkit, however. The mind is involved too. The mental one-woman band is more than just the aforementioned filling in of cymbal gaps. I’ve mentioned in a previous post that I can often mentally ‘hear’ songs in their entirety, with complete instrumentation, after one listening. And so I’ll combine the physical beats with a full mental musical arrangement.

I do this both with songs I know (Massive Attack’s Inertia Creeps is one of my favourite tunes to “play in my head”) and with new creations. And it’s been a repeated source of frustration throughout my life that I’ve never actually recorded any of the original musical stuff that fills my head.

Lack of confidence, lack of money, lack of space, inability to multitask or play most of the many instruments I wanted to record, executive dysfunction, simple downright fear – these things have all conspired against me over the years. And these days parenthood, work, and a small terraced house perpetuate this difficulty. But I miss making music, and, who knows, perhaps mobile technology might just make it possible for me to overcome some of my previous barriers and limitations.

In the meantime, I keep on drumming.