It’s never all bad.

[Author’s note: I’m publishing this post almost simultaneously with a previous one because I had both stored up as drafts in my paper notebook, but hadn’t had sufficient “get-up-and-go” to publish them until now. This is the more recent of the two.. However, I felt that the other post was sufficiently time-specific to need publishing pretty sharpish; hence, a buy-one-get-one-free, one time only offer.

Trigger warning: mental illness.]


It’s only dawned on me over the past few days that I have recently become horribly depressed.

In recent years, I’ve grown so accustomed to anxiety being my particular mental illness du jour that this particular “episode” has caught me unawares. The gloomy weather front had been advancing, but I’d continued to try to play in fading sun, in denial of the specks of mental drizzle and the occasional gust of despair – forcing myself to soldier on, like an anorak-clad British holidaymaker building sandcastles on a rainy, windswept beach.

But the feeling that I’m “not good enough” is unmistakeable. The veering between floods of tears and experiencing a desperate need to cry without being physically able to do so. Even all the beautiful detail around me seeming, on occasion… somewhat flat.

I’ve been here before.

I’ve been ground down. One too many instructions to “just try and keep your reactions under control” in the face of the near-constant sensory onslaught, extreme distractibility and utter breakdown of executive function that come with being an autistic parent off work for three weeks of the summer holidays and contending with the looking-after of a five-year-old and a toddler in the throes (though he’s not reached the official age for it) of the “terrible twos”.

An awareness of A-level results being received, and the recent discussions about “giftedness” have caused me to mentally reframe much of my lifetime thus far of academic experience. And the anger has been building and building and building over all the things I didn’t achieve. All the times I felt I “wasn’t good enough” when I wasn’t playing on a level field. And I didn’t even realise I wasn’t.

I’m self-aware enough these days to recognise that the “not good enough” feelings are untrue, inaccurate, unfounded. But that doesn’t stop the anger and sadness.

And yet, it’s never all bad.

I’ve spent a day on my own. My husband and I agreed that I needed at least a couple of days entirely to myself during this final week of the holidays,

And as always, as I go about my day, I continually experience reminders of times gone by: scenes; sounds; images; smells; snatches of speech. Triggers of past memories. And though my current prevailing mood shares its similarities with those of dark times past, I can’t help but experience some pangs of nostalgia for those times. Fondness, even.

Right now, so many of the clothes I see in shops, and worn in particular by young people, are in styles that last saw the light of day when I was a teenager. I see young people in their teens and early 20s, kitted out in uncannily familiar garb and hairstyles, and my heart goes out to them. I feel compassion, admiration, wry amusement, wistfulness. But also hope. They have so much of their lives ahead of them, and I desperately want to believe that none of them are experiencing the pain I felt at their age.

And yet to say it was constant pain does my entire life a disservice. For all the years I was depressed, I still experienced joy, laughter, companionship. Long deep conversations, or just ridiculously amusing ones. The excitement of gigs and festivals. Band rehearsal camaraderie. Bright, golden sunlit days. Starry skies. Euphoria. Dancing. And oh, so much love.

During my formative years, I struggled with my sense of true self. I still do. Womanhood and femininity still come awkwardly and unnaturally to me. And yet, I have always been me, deep down, Any sense of self I did have back then was distorted by lack of self-knowledge and yet…those years were still formative.

And despite any pain, I still had so much fun. Sincerely.

It’s never all bad.

Any spike of fun a person has during an extended bout of depression does not negate the experience of that depression. It’s not a flatline. But that doesn’t mean it isn’t still hard to bear.

I had a great day. A lengthy morning gym session. Towards the end of that, yes, I did feel the pricks of tears that wouldn’t come. It took a long time to get myself showered, dressed, and home.

But then I was out again. Gin and tonic and tapas for lunch, and an unexpected kindness from a long-not-seen friend. The necessary evil of a bit of shopping, and then a lone trip to the cinema. I revelled in the darkness of the theatre. The film, Detroit, was masterful. Harrowing. Shocking at times. Tears welled in my eyes as the ending approached. But one doesn’t always need levity and glee to be taken out of oneself. I was immersed in something other than my own gloom for over two and a half hours.

And I returned home to my family. I cuddled them, made them tea, and played makebelieve with my daughter. We visited a haunted house.

I’m still, in the grander scheme of things, depressed. But it’s never all bad. Today was good for me. 


[Featured image: bright green, somewhat “architectural” foliage – stiff, long leaves with sharp pointed tips and veins that firm concertina folds along the entire lengths of each frond.]

Advertisements

Picture this.

[Author’s note: I’m publishing this post almost simultaneously with a subsequent one because I had both stored up as drafts in my paper notebook, but hadn’t had sufficient “get-up-and-go” to publish them until now. This was written a few days ago, and it doesn’t quite fit my current mood – the accompanying post does. However, I felt that this one was sufficiently time-specific to need publishing pretty sharpish.

Trigger warning: mental illness, post-traumatic stress disorder.]


I’m writing this post with Blondie‘s ‘Picture This‘ playing on repeat in my head.

The copy of the song that I hear on my mental jukebox is the one on the secondhand vinyl LP copy of Parallel Lines that I bought during my second year of university. Scratched in parts, though not sufficiently damaged for the needle to jump. I can hear the particular qualities of my specific vinyl copy, with its fuzzy warmth and minor quirks, gently filtering the instrumentation and Debbie Harry’s vocals.

It’s in my mind because I had a documentary about the making of Parallel Lines running on the television as a soundtrack (preceded, no less, by a selection of 80s hip hop classics) to my reorganising of my CD collection following a redecoration.

But the documentary evoked so much more than simply the sound of the song.

I am at the opposite end of the visualisation abilities scale from someone with aphantasia. My visual imagination – nay, my three-dimensional, multisensory imagination – is piercingly acute, and at times seemingly all-encompassing. It can be as if I’m experiencing parallel worlds, alternate realities, or times long past, but not actually in parallel; one world is overlaid upon another. I experience both simultaneously.

I suppose it’s something like being a cyborg, a networked human, a ‘ghost in the shell‘. Simultaneously processing both what’s in front of me and also another, different but no less potent reality that exists, and is experienced, in a different portion of my mind.

Over a year ago, I was walking my daughter to preschool. It was late spring. Something about the quality of the crisp spring air, the golden glow of the sun still low and yet bright in the sky, the cold-warm piecing blue of the sky, led me back to an early-morning walk along the seafront of Thessaloniki, Greece at the start of February, 2011. I was both there, and walking my daughter to preschool. Both realities existed, there and in that moment.

Sometimes, the recollected worlds that overlay my present-day, real-time world are far less pleasant. For several years after breaking up with an emotionally and financially abusive previous partner, there were times when I really, honest-to-goodness, lived back in that council flat. The terracotta walls of the living room. The overly firm, overly shallow, institution-blue council issue sofa. The clunk of the door to the controls of the enormous floor-standing combi boiler. Clothes soaking in the bath for want of a washing machine. The cloying stink from the rubbish chute. The nightly whirr of the police helicopter in the sky above the estate, and the constant undercurrent of fear.

Those flashbacks often brought tears to my eyes. I felt like I was there. Again.

This evening, I went for a long walk. It grew dark as I paced the streets, ‘Picture This’ playing over and over. I bought Parallel Lines not long before the beginning of my biggest ever depressive episode. And it’s sad to think that so much of the music I love was purchased at a time when I was so sad. As I walked, I was back in my ground floor student bedroom, the living room of a terraced house poorly converted into sleeping and study space. The lime-green throw on my bed. Threadbare carpet.

I was so lost, back then.

Towards the end of my walk I passed through one of the local “student villages”. And although my own first-year flat was nothing like as luxurious, something about the landscaping, the carefully laid out paths and highly geometric medium-rise accommodation blocks, brought back the pleasant, sweet-sour smell of the glue on university prospectuses; the weight of each of those thick, wide, rectangular tomes, and the sheen of their covers.

It’s August, after all. All across the country, many will be preparing to leave home for the first time, with or without their anticipated A-level grades, whether or not to their original educational establishment of choice. I remember that feeling of anticipation. The anxious wait for something new. Something that just had to be better than what I’d experienced in life so far.

And I felt angry. I so often do these days. And desperately sad. Because whilst my life has, in many ways, been a good life, so much has not been the way it could, or should, have been. And whilst regrets are a waste of time and energy, I can’t help but grieve for lost opportunities, potential not reached, support neither given nor received.

Since my last post and the resulting comments, and after reading another author’s subsequent blog that references it, I’ve been thinking wistfully about my education. My years lacking in confidence. My years of self-doubt and shaky self-identity. And I think to myself: I wish it hadn’t always been so bloody hard.

I wish I’d known who I truly was far earlier in life. I wish I’d known far earlier in life that it was okay to be me, and to be the way I am.

My night-time walk, like so many before it, took me along streets lined with tall, mature trees. Occasional flashes of bright, vivid green leaves picked up by streetlights directly overhead. Noises from houses. My own footsteps, the sound of my breath, and the slight feeling of strain at my hip joints. My need to move my arms vigorously, coupled with a nervousness about doing so in a public place, no matter how late the hour or how empty the street.

Every time I must take myself out of the house for a walk, I am reminded of those countless other occasions just like this one. The worlds of those other space-catching, breath-catching walks layer and layer over my present world. Not all of them are distinct memories, of course, but the sense I get from each one is played out time and time again.

My walks sometimes clear my mind. Sometimes, they fill it. They may soothe my tingling, fizzing body’s need for “something” other than an indoor environment. And they may ease my pain in some ways, whilst also making more acute that other, remembered pain.

And as ‘Picture This’ plays over and over in my head, I’m reminded of just how often I’ve striven, and struggled, to find myself somewhere on those tree-lined streets.


[Featured image description: grainy, heavily filtered (blue end of colour spectrum) photo of a set of mostly-empty CD shelves, with piles of CDs stacked immediately in front of them, awaiting sorting and re-shelving.]

One year on

It’s a whole month since I last wrote a blog post, which seems an awfully long time. A couple of weeks ago, I celebrated one year since it was formally confirmed to me that I’m autistic. I’d been intending to write about it around the date of my “autiversary”, but I’ve been pretty short on time recently. And now it’s a while after the fact, and whilst I’d like to write some kind of lovely creative piece, the truth is, I need to get myself back into swing of things by doing a bit of self-reflection. This post is probably going to be more for my benefit than for anyone else’s, therefore.

A year since diagnosis seems a far more apt time to reflect than the arbitrary calendar shift that occurs from December to January. An autism diagnosis, for an adult-diagnosed autistic person who’s spent most of her lifetime not knowing such a fundamental fact about herself, is a pretty bloody significant milestone to mark.

A lot has happened to me in recent months, autism-wise. Back in May, I had an article published in the Times Higher Education Magazine about my experiences as an autistic student (albeit undiagnosed at the time), and education developer. It was a re-working of a post on here, and the response to it was pretty overwhelmingly positive. I’m now in touch with a fellow late-diagnosed autistic woman in my institution, and we’re looking into setting up some kind of peer support group for autistic staff. Before that actually happens, I’m just looking forward to having coffee with her, and just “being autistic” with someone else who understands.

Last month, I took part in an awareness event organised by our Medical School, featuring a performance of an original play on autism and being different by Spectrum Theatre Sheffield. I took part in the question-and-answer/panel discussion that followed the performance, alongside members of the cast and a (neurotypical) representative of a local charity (who I won’t exactly say hogged the discussion, but, well, never mind. On the whole, it was all bloody fantastic).

In September, I’m running a workshop with a bipolar colleague on neurodiversity and enterprise education at my field’s biggest annual international conference.

I’m open about being autistic. I’m out there. I’ve added the #ActuallyAutistic hashtag to my work-focused twitter profile. It’s a risky business, but to me it makes complete sense. I can’t be other than who I am – and once you realise who you truly are, after not understanding for so long, how can you ignore it or turn back?

And I’m lucky to say that only very rarely has anyone looked down on me or patronised me (I might write something about this at some stage, but I’m staying upbeat for now). Most people seem to be politely interested. Perhaps that’s simply a reflection of the circles I move within.

I’ve experienced nearly a lifetime (so far) of self-doubt, faltering and dissolving confidence, impostor syndrome, and inferiority complexes. I’ve never been “good enough”. And even though my diagnosis has been liberating, it’s also made me put myself under the microscope once again, scrutinising my past experiences, behaviours and reactions anew. I sometimes find I question my actions in a far more extreme way than ever before, despite my determination just to relax and be myself more than ever before. But this has also been one of the most God-damned life-affirming, validating years I’ve ever had, from a professional and personal perspective (let’s just ignore world events for now, yeah?).

I’ll probably reflect separately on positive work stuff and the cool things I’ve learned recently about how my autistic brain works, but for now, it’s enough to say that I’m not special. No-one is. But for all the challenges I’ve faced, the traumas and indignities I’ve suffered, and the pain I’ve endured, I wouldn’t change who I am. I actually like who I am, right now. It’s taken a long time to get to that point, but I’m here now.

And I can keep moving forward, whilst valuing the world I’m in right now.

[Featured image description: park on a bright sunny day, with blue sky, people playing, sitting, or lying on the grass, colourful flowerbeds and lots of trees.]

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.