On being mindful: the good, the bad, and the doubtful

I try to be mindful: I don’t want to do anything that would hurt anyone else, I don’t want to do anything that would hurt me. It hasn’t always been that way.

When I was in the revolving door of the mental health system my life was chaotic. In crisis a lot of the time. They tried anti-depressants, anti-psychotics, stuff to calm me down, stuff to lift my mood; talking therapies, ECT; in-patient and out-patient. And still I could be violent towards others (throwing anything that came to hand in the direction of anyone who annoyed me) and always violent to myself. Self-harm was my prime coping strategy and many times I made suicide attempts.

Last year I was referred to a Mindfulness group. Way too many hours plodding through a workbook that expected – demanded – total commitment; exercises to do each day between sessions, sheet to complete. I shut down when the very first exercise involved total mindful immersion in eating a raisin. What? I hate dried fruit. The sweetness. The texture. The way it sticks to your teeth. No way could I even think about it. But then I didn’t know I was on the spectrum. And so the weeks went on with me trying to be involved in the group knowing that I did no homework. The others felt guilty that they weren’t committed enough. In fact I did feel that the whole thing revolved around hanging a huge guilt trip on you. I felt that giving lip-service to this charade of MacMindfulness was all it deserved.

Don’t get me wrong. I’ve meditated – but in a ‘proper’, not-for-profit meditation group, when I’ve visited my friend in South Australia. She runs such a group and once she brought a friend who taught us the Buddhist cleansing breath.

And so last November, having recently been diagnosed ASD I drew up a plan for my days and included ‘Being Mindful’ each day. So each day, hopefully around the same time but I certainly don’t beat myself up if it isn’t, I do a 3 minute breathing space exercise. I’d be lying if I said it hasn’t made a difference. Sometimes I find myself getting a bit fraught and I say to my husband – I haven’t had my 3 minutes. I take time out and feel so much better. And if my mind wanders, so what? I tend to find that I’m thinking about positive things, I’m never distressed, and I’m certainly not emotionally uncomfortable.

I’m not going to advocate that you start full-on mindfulness. Certainly not the kind that I’ve come across – that would be hypocritical. But being mindful on your own terms and in your own space may help. As long as you’re comfortable, you can do worse than try.

A regret: things I should have done

Yesterday I went to the Caernarfon Food Fayre. Before I set off I wrote about my feelings, trepidations, and how I hoped to cope. Unfortunately, and I guess this is an ‘aside’ regret, I didn’t post on this site. I was on my Facebook page – ASD and beyond – and only posted there. So, apologies.

What I did, what I should have done

The Food Fayre was amazing and I surprised even myself in the way I handled it. Sure, I got angry with the people who barged past (despite my walking with a stick) and especially with a woman who managed to knock against the whole of my right arm (yep, the one in which I hold my stick). But what was incredible was that previously I would gone into a full meltdown – tearful, verbally loud, demanding that we get out. My husband was also amazing, asking where I’d like to go, steering me towards quieter places, and being totally patient.

So, my regret? We were at a stall looking at the foodstuffs – handmade confectionery, real Turkish Delight in all colours and flavours, and olives. Wow, those olives. I turned to leave and a young lad was behind waiting to get to the stall. He saw my stick, stepped back and said ‘sorry’. Brilliant understanding and compassion about a sudden situation. But his mother wasn’t happy about this. She pushed him forward with the words ‘Go and say what you want.’ I felt for the lad. But I did nothing and said nothing. I smiled my thanks and I hope that was enough.

I truly hope my smile said what I couldn’t.

Know someone on the spectrum? Not sure how to behave?

Before I begin … I can only speak from my own experience; from a standpoint of being an adult; of having language, speech, communication skills, and a considerable life-time of getting on with people. Well, that’s how others see me, and when I began to tell those closest to me about my diagnosis 99% said they’d never noticed anything that would even hint at it. That’s 99% of a half-dozen people as I’ve never been anyway close to 100 friends or acquaintances!
As for my husband, it’s been a very steep learning curve for him. For the first few months after diagnosis my shutdowns / meltdowns would still take him completely unawares and the following conversations about them would often end with him saying “I forget that you have a serious condition – you always seem so normal”.

How do I see myself? How do I feel about the world? Being within this world?

It’s tough. Not just tough being out there. Tough being inside me.

Yes, I have language. I love language: the rules of it, the spelling, grammar, idiosyncrasies. But I don’t always follow the spoken language. I take things literally.

Yes, I have speech. And boy can I talk: but I don’t know when to just shut up, when what I say is inappropriate, if what I say is too soft or too loud.

Yes, I have communication skills. I’ve given talks on my Personality Disorder and on my Sensory Integration Dysfunction: but I don’t find it easy to do ‘small talk’, to engage with people in ‘low-level’ chat; I’m only comfortable with a good discussion about things I’m interested in.

Yes, I get on with people. But it tends to be superficial. I can be what people expect from me; I mirror them in order to learn; I wear a mask that is adapted for them; and then I’m in for social overload when it’s over. This may be shutdown, or full-blown meltdown depending on how draining or stressful it’s been.

To return to my starting point, how might you behave?

Ask them

When I’m in shutdown I need to be left in my own headspace for 10-15 minutes, maybe upwards of an hour. Sometimes I take myself to bed and sleep. However long I need for my head to re-boot my husband now knows to leave me. Then I’ll need the physical assurance of a hug that I’m back in a good place. That process didn’t evolve overnight. We talked about it, discussed it, tried it. And now we have something that works. No questions. No discussion. No post-mortem.

When we are out and I’m obviously struggling, I’m able to ask that we move on or go elsewhere. Previously that would have been met with ‘Why?’ ‘What’s wrong?’. Now it is understood that I need do. End of.

The most difficult situation is one that does need to addressed before that situation arises. What to tell people who may visit, ones who are likely not be their friends and we’ve had this scenario recently when an old family friend of my husband visited. Within a couple of months of my diagnosis my husband asked what I felt about telling people. Well, I’m absolutely fine with it. It’s certainly not anything I’m ashamed of.

Almost as important as your asking, is their knowing that you care.

I know that when I’m asked ‘Do you have your headphones?’ when going out that it is asked from a point of caring that I’m OK. My walking stick goes in the car.

If you’ve read my blog on stimming you’ll know that Norm is my constant companion. If you haven’t, well he’s a hedgehog (not a real one but I don’t tell him that) that I’ve had for 24 years. He spends most of the day by my armchair in the living room, which happens to be the room we ‘live’ in – armchairs, dining table, computers. When we watch TV my husband takes him into the sitting room; when we go to bed, Norm comes with us. He travels with me, he goes to hospital with me. I don’t have to ask.

I hope that these few pointers have set you thinking. About them. About you.
If you’d like to ask me about this … I can’t guarantee anything above and beyond my own experience … but I’m happy to try.

Ask. Care. Ask. Ask. Care. Ask.

Book review: spectrum women

spectrum women – Walking to the Beat of Autism

Edited by Barb Cook & Dr Michelle Garnett; Jessica Kingsley Publishers 2018

Unless you are able to take in all that a book has to offer just by scanning a few pages, possibly through mental osmosis, then any purchase has to come with a certain degree of blind faith

Well, I took that leap of faith and I have not been disappointed. The Foreword had me laughing out loud and I knew that I would be in safe hands reading this book. The contributors are fifteen women with experience of autism who bravely share their personal journeys in the hope of helping others. Each of the twenty chapters explores a different, vital aspect of life (growing up, socializing, parenting, relationships, executive functioning, self-care are just a few) written by different women and all ending with input from clinician Dr Michelle Garnett.

Even if every chapter is not relevant to you (I’m long past needing a chapter on growing up – although I can see with hindsight how my autism affected my childhood) it is a brilliant book. It’s one you don’t need to read front to back, but can dip into as needs or curiosity arise.

So, to all the women who worked on this book, in whatever way, I thank you with “a silent clap” from the heart.

To blog, or not to blog? That’s quite a question.

With apologies to Shakespeare, here’s my take on a smattering of great writers.

The Bard himself, trawling for ideas, getting known. The Blogging Beast.

Dickens, the ultimate showman and self-promoter. Why travel extensively to reach hundreds when you can reach the world at the press of a key? His novels were published like modern soaps – short episodes ending on a cliff-hanger. Perfect for a Blogging Diva.

Walt Whitman, man of the world, man of the universe; blogging into the dark nights reaching fellow souls, speaking of their pain. And wanting nothing back. The Wise Blogger.

Kafka, using the Blog as pivotal to touching a disembodied society searching for answers to which there are no questions. The Humanitarian Blogger.

What’s your take on your favourite writers as bloggers?

I’ve been blogging now for five days – that’s hours and hours at the computer to produce a dozen posts. But I’ve also been learning and refining. Not just learning the mechanics about how the site works, what each theme can do, how to navigate within the site, but learning what to do and what not to do when it comes to publishing. Before publishing a blog, I’ve learned to:

  • plan what I want to write and then compose it as a Word document first; I can then copy & paste and do final tweaks on site; for me this process takes the pressure off doing everything directly on site
  • get images ready to go, checking dimension requirements, how they will appear on the screen, and how the Title will look on the background image
  • be myself, in the way I write and the way I present; that’s the only way I can be consistent, so if people like what they read and come back they shouldn’t be disappointed
  • and read advice from successful bloggers who post great tutorials that I can relate to; I’ve found one that I find particularly relevant and useful – The Art of Blogging by Cristian Mihai. http://artofblogging.net

So, yes definitely blog if you’ve got something to say that’s worthwhile, that will reach out to individuals, that you feel passionate about, that you care about. My blogs are about my first-hand experience of autism and mental health. I believe I tick all those boxes. And I believe that they are worth all the time and effort they take to do. But mostly I believe I’ve got to keep learning because it’s the only way to get better.

What’s stimming for and how does it relate to being on the spectrum?

The generally accepted definition of stimming is repetitive “self-stimulatory behaviours”. It can affect people with differing diagnoses and conditions, and while it is a common feature of autism it is not necessarily an indication of ASD. It can affect old and young alike, although older people may learn to hide or mask behaviours that may appear ‘weird’ to others. Whoever engages in it, I regard it as a ‘self-soothing’ coping mechanism.

These repetitive behaviours can take a wide variety of forms, for example:

  • physical (hand-flapping, rocking, hard blinking) and verbal (repeating noises or words)
  • outwardly visible (pacing) and unseen internal actions (tightening & relaxing stomach muscles)
  • intense response to sudden disturbing occurrence (rocking head when there’s sudden loud noise) to a prolonged response to sensory overload (whole body rocking)

In short, stimming is as varied as the individuals who stim.

What form does my stimming take?

I have used stimming as a coping mechanism for so long that I don’t recall when it started. I do recall the first time it was commented on although I didn’t know there was a name for it. I was in my early 20s and my husband and I were walking by a river. In the distance I saw two or three people coming towards us. As they got nearer I began to sing – just quietly (I think) – and when they were a ‘safe’ distance behind us I stopped. This was when my husband commented that he’d noticed that I often sang when strangers approached. I thought it was probably due to a nervousness I have in such situations. That was it.

Forty-odd years later I have a very clear knowledge of what I do, what helps me, and when to tone it down.

I still sing, but in a nonsense / repetitive way if very distressed; before my ASD diagnosis my husband would ask me to sing something he recognised so he could join in!

I move my fingers – stretching, flexing – when I need a short-term fix to get my thoughts back in focus

I tap my feet, separate or together, push up on my toes, or bang my heels down

And I rock. Gently, rhythmically, most of the day. I rock as I’m going off to sleep, and I find that I’m rocking when I wake

My take on stimming generally?

ASD stimming is harmless to others; it causes no offence. So why people question it is absolutely beyond me. So called ‘neuro-typicals’ also stim, but their stimming is considered socially acceptable. It is socially acceptable because ‘N-Ts’ are in the majority. Except that their stimming behaviours can be environmentally unfriendly, offensive, harmful to themselves and others. But it’s OK.

My Gang

These six characters are with me for a lot of my day. Their leader, and my constant companion is Norm – the hedgehog who’s been with me through thick and thin for nearly 24 years. For those of you who know Monty Python, he’s named after Spiney Norman. They are important to me and, like other forms of stimming, help me cope in difficult times.