Hashtag Autism # – is it helping ?

Recently on Twitter there have been a couple of hashtags to do with Autism, #livingwithautism and #actuallyautistic.

And I’m not sure about either of them. 

The first, “living with” conjures all sort of bad things in my mind. I say that because, in my experience, the only time I hear the words “living with” or those of a similar bent, are by way of a complaint. 

“Well I have to live with it” 

“You try living with it” 

“If I have to live with it a day longer..” 

it always sounds such a burden, a chore, something we would rather not face. 

I appreciate that many responses have been in a humorous vein and that’s great but to me “living with” sounds tiresome and forced. 

“Actually autistic” does, I feel, present it’s own problems. 

It’s like a justification. Yes I’m “actually” autistic. Yes, I really am. No, I’m being serious. 

Who, exactly are we trying to separate ourselves from ?. Those who aren’t “actually” autistic but might be/hope to be/think they are or from the wider neurotypical world. 

Does “actually autistic” mean things by/relating to/for those on the spectrum ?. Is this a seal of approval ?, a quality mark if you were ?. Genuine Autism sold here ?. 

And should we have to justify it ?. And to whom ?. 

I have Aspergers. I am Autistic. Do I need to add “actually” ?. Does it make me better ?. 

Is there an “actually neurotypical” hashtag ?. Should there be ?. 

My uneasiness stems partly from these things being, to me, a little unnecessary and partly from the fact that we have somehow become quite militant, quite tribal and also quite dismissive of the neurotypical society. We’ve started to become a little arrogant. 

It interests me when I read tweets dismissive of people such as Tony Atwood or Simon Baron-Cohen. Tweets that criticise their thinking, call them misguided or wrong to varying degrees….yet these are the people (in Simon Baron-Cohens case certainly) who have diagnosed some of our associates on the spectrum. 

Were they wrong in their diagnoses ?. 

But I digress from the point I was making, Do we need a hashtag to prove a point ?. To highlight who we are ?. 

Of course I can’t stop it. If people want to use hashtags then of course they can. But are they really helping us ?, promoting us ?, capturing who we are ?. 

I’m not “actually” autistic. 

I am Autistic. Full stop. 

” So here I am once more…..”

” In the playground of the broken hearts. One more experience, one more entry in a diary, self penned. Yet another emotional suicide, overdosed on sentiment and pride…”

Those lyrics, from “Script for a Jesters Tear” by Marillion, seem very apt today. 

I feel broken. Not just in my heart which seems full of sorrow, grief and regret, but all over. I feel shaken, lifted and hurled down onto jagged rocks, my body breaking into a million tiny fragments. My mind is a rapidly changing cinema screen flicking endless images behind my eyes like some bizarre slide show. I am thinking a thousand thoughts at once, each overlapping the next and then layering itself like a sheet over the bed in my mind. One after another they come and are then overtaken by a rapidly advancing wave of the next thought, cascading, gushing, roaring like a river swollen with winter rains and melting snow. 

My body aches. My head throbs as the next thought crashes through my skull. I feel the weight of lost hopes and wasted dreams pound my shoulders and drive me down. My knees buckle under the weight of expectation, but whose expectation, mine, or others, I cannot tell. 

Each day becomes harder. I unfold myself from my tormented slumbers. Each movement brings fresh agony and then the dull throb of resignation as I roll, joints protesting and cracking argumentatively from my bed. 

My right hand side, my stroke affected side, utters feeble protests as I stand, bent, twisted, lop sided. Some days it’s obstinate, other days more obliging but it’s always there, that feeling that I’m in two halves, an invisible line between my good side and my bad side. 

Physically I’m exhausted. Rest seems mythical. I mean true rest, the rest from which you awake refreshed. Sleep seems fitful, vivid dreams disturb me, frighten me, I’m always running from something. I wake often, too hot, too cold, too sore. I toss, I turn, each movement sending pain through my nerve endings, each movement as useless as the last. 

Daybreak brings fresh pain. The pain of work or not work, routine or not routine, each equally insufferable. The lighting at work that hurts my eyes, the closeness of others, that feeling of helplessness, the unpredictability of the caller, the uncomfortable, oppressive nature of the building itself. 

Or home. Mindless, useless, formless. No routine. Freedom yes, of a sort, but then also trapped. Trapped in uncertainty. Trapped in myself. Trapped in not knowing what to do. No hobbies, no pleasure. Either way there’s that feeling of desolation, of being troubled, of being sick. Of wanting out. 

Sentiment and pride are not familiar bedfellows. I have nothing to be prideful about. I take no pride. I have no pride. Nothing achieved and hence nothing to be proud of. 

I cannot overdose on sentiment. I do not know how to express something I do not know. 

Suicide. Yes I often think of it. Not it as in suicide itself but the feeling of wanting to return to a state of nothingness. To retreat back into the void from whence I came. Not death then, yet a desire to not live, to be “unborn”, to be diminished, to go from this world and leave nothing behind. 

So here I am once more…

Regrettably, sadly, unfortunately…

I am. 

Here. 

If I wake up tomorrow

If I wake up tomorrow

Forgive me

It’s not what I wanted to do

I look at my life and it hurts me

I just want it all to be through

I’m tired of the hurt and the suffering

The anguish, the torment and pain

And if I should wake up tomorrow

I have to live through it again

I know I have nothing to offer

No skill and no talents to use

So living like this, it just seems to me,

A different form of abuse

So if I should wake up tomorrow

I’m sorry ……

So sorry…

When Anhedonia strikes..

Two years ago I had hobbies. Things I enjoyed and took pleasure in. 

I looked forward to things, new books, new films, new music by my favourite artists. 

Then things unravelled. 

Dad died. He had vascular dementia and went downhill pretty quickly. The last few months were depressing and I hated seeing this crumbling, stuttering shell instead of the DIY expert, the huge jigsaw fan, the avid stamp collector. 

Then Mum committed suicide. 

Police on your doorstep at 2.50 in the morning is never a good thing. Both parents gone in eight months. This was December 2014 to August 2015. 

And with their passing so did my interests. I lost pleasure in everything. It all became a chore. 

I read bits of books, skipping pages through lack of concentration, lack of will power, lack of interest. 

I didn’t want to watch a film. I didn’t want to watch anything that was long or required me to concentrate. I got bored and frustrated so quickly. 

Music seemed annoying. It was just sound and I had no patience with it. I found songs trite and meaningless, repetitive and an assault on my delicate senses. 

Part of this was down to Mum. I couldn’t pick up the phone and talk to her anymore. I couldn’t hear what she thought of music she had heard, of books she had read or what the critics in the papers thought of the latest blockbuster. Everything seemed meaningless and pointless. 

And now ?

Now I have no pleasure. I force myself through everything. I try to read, listen to music, watch films, but there’s a hollow feeling inside. I’m just passing time, I’m not living, not enjoying the moment. 

I loved to travel. But there is a financial requirement there and it’s one I can’t meet with enough regularity to sustain me. And then, again, the person I talked to about my travels and who I bored rigid with the endless photos, was Mum. 

I went to India last October. Loved (I think) the experience of my third trip but the build up, usually so enjoyable, seemed slow torture and the emptiness I felt when I returned, of having nobody to share things with, was profound. 

I feel trapped. 

But I don’t know by what ?. Grief ?. My lack of talent in something I enjoy (any talent would do) ?. Money ?. My whole damn life ?. All of those, some some of those ?. 

I have Anhedonia. It’s been 2 years since my decay began and I have no idea what to do anymore. I have nobody to turn to, nobody to talk it through with..

I have no pleasure in things. No enjoyment. It’s been sucked out of me. 

And that sucks! 

Working through my Autistic life

I’ve been up since 2.30am. Can’t sleep. Had a tooth out yesterday under sedation, eyes heavy, headache, jaw ache, blurry vision. Feel like crap. 

Ideal time to blog. Ideal time to do a blog nobody will read. 

I don’t know where I am in my life. 

Recently here was some trouble on twitter. Sides were taken, battle lines drawn, conversations taken out of context. 

Disappointing. 

As a community we, on the Autustic spectrum, always seem to be moaning about not being taken seriously or understood by NTs. Yet, there we were, fighting amongst ourselves, point scoring, name calling and worse. Pathetic. 

I wasn’t involved. Wasn’t involved yet felt dragged in and deeply depressed by it all. Thought we were a community, a team, not a bunch of juveniles who need to sit on the naughty step until we cool down. 

Not taking sides. Wasn’t there. Don’t know how it started. I can say though that calling me a c**t in a tweet did semi drag me into it and then asking followers to get an account blocked because the person who called me a c**t, was in turn called that by a third party, is being hugely hypocritical by anyone’s standards!. 

But what it did illustrate was something I’ve mentioned before, the rotten core at the heart of Autism. 

I’m 50. I was diagnosed in 2009 and again in 2014 (just for good measure). I have Anhedonia, Dysthymia, Depression, Anxiety as well as physical ailments. 

What I would like is a knowledgeable, approachable, supportive community. That’s something I could really do with. But what I find is a know it all, superior, condescending (oh your diagnosis can’t be right/is worthless unless you know every piece of terminology or label associated with Autism) , my diagnosis is better/more worthy than yours, approach. 

That’s really unhelpful. Really unhelpful. 

I am trying to make sense of so much, my physical stuff, losing both my parents in an eight month period in 2015, one to suicide, how I feel, being trapped in a job I loathe because of it’s unsuitability and how it’s making me ill, relationships, a complete breakdown in my ability to get interested in anything at all, my loss of hobbies…it’s along list. 

So I’m trying to work through my Autistic life…

And I’m really struggling. 

I’m not better than you, you aren’t better than me, stop the attitude and come together as a community …please ?. 

I’m trying to work through my life and a community that could help me is, instead, damaging me. 

Grow up!