Paper Lifeboat

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Welcome to Paper Lifeboat!

It’s hard to remember that this day will never come again. That the time is now and the place is here and that there are no second chances at a single moment.
Jeanette Winterson

Welcome to the Paper Lifeboat blog. Founded in Spring 2019, its aim is to connect with adults learning that they are autistic – to offer education, entertainment, and some much-needed solace.

Here goes…

I’ve always felt like an alien on this planet.

As a child in the 1970s, I used to think, “Any minute now, someone is going to let me in on what’s really going on here. Until then, I have to play along. If I just keep pretending, if I just keep smiling, I’ll be given the keys to the kingdom and my life can really start.”

I learned to mimic and tell stories, to make people laugh, to act and to put on a good face. I just had to be patient, I told myself. Eventually I would pass the secret test, and someone – perhaps a parent, perhaps a teacher, perhaps even a benevolent committee of some kind – would take me into a quiet room, sit me down, and congratulate me. They’d tell me the reasons why nothing made sense, everyone was pretending, and everything was just a bit, well, weird.

Weird summed up my days. I couldn’t keep track of physical objects and was forever losing and breaking things, including my own body. I found eating to be uncomfortable and pleasureless, and couldn’t understand why we performed this bodily function in groups. I didn’t like to be hugged or touched, preferring instead to soothe my senses with repetitive fiddling that drove others mad (particularly the few people whose arms or hands I did like to stroke for comfort). I laughed at things no-one else found funny, and missed things that others did. I often zoned out without knowing why, and forgot huge expanses of the day, yet at night I couldn’t settle to sleep. I was probably hungry and exhausted most of the time, but couldn’t tell. I still didn’t know what was normal, so there was nothing to compare it with. I still hadn’t been told.

Teenage years arrived, and I was still awaiting the chat. By then I’d had some wonderful, happy adventures in this peculiar and miraculous world. Academically bright, outspoken, and creative, I bounced through life doing reasonably well on the surface. But I never quite fitted in anywhere. Whatever the class, club, or clique, I could give an approximation of being a member, but would often find myself inexplicably excluded before too long. I loved people, but they confused me. I would crave time alone so that I could weep, rock, and shake without attracting attention. I didn’t know how to “hang out” with others, or obey the unwritten rules of group membership and loyalty. I started to become a loner. I stopped acting and singing. All of a sudden I didn’t want anyone’s eyes on me. I made myself small to pass under radars; without anyone realising, I was getting left behind.

By my early 20s I was beginning to think that the “chat” was never coming. Still, I persisted in all the right things; I graduated, and went on to hold down demanding work in the emergency services. I married and became a mother, I took a worthy charity job, I arranged birthday parties and went to toddler groups. It all seemed like a fairy tale, and that’s exactly what I was doing – following a narrative and waiting for the chapter where it all made sense, where I could start to feel the benefits of it all, instead of feeling scared and overwhelmed all the time.

The disconnect between the two was painful; I was regularly suicidal and self-harming. I covered it well with masking because I felt so ashamed of my inability to cope, but this exhausted me. I’d regularly collapse knowing something was wrong, but not what, and not feeling able to connect with anyone who wanted to help.

Once I entered my 30s, I realised I had to go out and find this “chat” for myself. Action was needed if I was to continue to function at work and as a parent – and once I became a mum, I couldn’t hide my not-coping any longer. With great difficulty, I broke the pattern of generations and asked for help.

Mental health services did their best, but never really settled on a diagnosis for me, and whatever it was ran much deeper than anti-depressants or therapy could touch. Time after time I’d be signed off a course of therapy or drugs with the needle having barely moved; therapists would say, “I’m sorry we didn’t make much difference for you.” I’d always learn something from therapies like CBT or EMDR, but I couldn’t really execute it; like watching a gymnast somersaulting, I could see how it worked, but couldn’t somersault my own, unwieldy self.

Eventually, I gave up involving other people at all, apart from a small tribe of beloved weirdos who loved me fiercely. The “chat” wasn’t coming, I decided. No-one, anywhere, knew what was going on. I resigned myself to being lost, relying on my own wonky coping strategies to get through each day.

I’d always been aware that autism existed. But it wasn’t until I first started working closely with autistic people in my late 30s (first as a mental health worker, and then as a service manager) that I realised it might be a factor for me. I related much more to autistic people than to others. They made sense. I liked the way they approached things, their unmasked socialising, their sense of humour.

Both my children’s schools were noticing differences in them, too. In the 1970s and 80s, so long as your marks were high and you weren’t misbehaving, no-one minded if you spent each lunchbreak locked in the toilet, or sitting on a wall talking to yourself. In the 1990s, I could play the part of a coolly aloof student, or a boffin-like employee. In the 21st century, things got noticed. Or maybe I was just more aware. Maybe… maybe someone did have a clue, after all. And so it was that I started the long journey towards the realisation that I am autistic.

In time, I’ll share the things that helped me to acknowledge it, how I was assessed, and what a difference it has made. (A huge turn of the tide came with an article about someone else like me, which I originally read on a blog just like this one; it inspired my name, and I’d love to find and thank the writer.)

For now, you might be wondering whether I’ve still given up all hope of “the chat” – the one where someone would give me the magic keys I needed to make sense of the world. So, yes. I have given up my 40 year hope that someone would explain it all to me. Instead, I’ve realised something rather wonderful…

We all co-create the reality we find ourselves in from one moment to the next, based on our experience, learning, and best-guesses. These are based on perceptions that are individual to each person, and our ability to express how the world looks to us varies wildly.

No-one really knows what’s going on, or what “normal” looks like. There is no committee, there is no “chat.” I used to think that was terrifying, but now I find it exciting. I’m ready to have agency in the second half of my life, rather than be tossed about on the waves.

People still yearn for “the chat,” though. And that’s exactly why I’m writing – to take part in the conversation. You can just listen for now – I understand that feels more comfortable at first. So I don’t mind laying my experiences out for you. It was a blog that first tossed me a life raft, so I’m paying it forward so that you can start your very own chat – with yourself and the people you choose to involve – before too long.

Wishing you well on your journey of discovery and self-acceptance!

Back in the water

I had a reminder that it’s been nearly three years since I last wrote anything here! I know the site still works, as I still get enquiries from time to time from people looking for a hand-hold. I’m always glad to give it, or to support a project.

Paper Lifeboat was doing its job quite well by simply sitting in the station and giving advice to any visitors that passed by. The world of autism acceptance has moved on a lot since last I wrote – and so have I. So, what’s been going on?

New openings through lockdown

Through COVID I’ve worked my socks off for a number of organisations working in mental health, disability, accessibility, and public engagement. I’ve learned a lot about creating media and trainings online. I even became a radio DJ at one point!

Em sits at a radio DJ mixing desk smiling and holding a pair of headphones. Across the desk two guests smile and talk into their microphones. — Hosting a radio show for Living Options Devon

The huge surprise for me was how much better I do at virtual events than in-person ones. There’s so much less sensory and social information to digest. Lockdown was good for me, my career, and my family. The kids enjoyed homeschooling and thrived with social pressures taken off them. Simply wearing comfy clothes each day has been liberating. My whole system has resisted the return to normal. This has shown up as better clarity in what I will and won’t take on. I welcome it.

Due to a very shocking and sad bereavement (a kind friend and boss) I was acting CEO at one job for a while while I helped them find their new lead. They wanted me to carry the torch, but it didn’t feel quite right to me for a number of reasons. I was content to help out during the initial shock and recovery, and make space for someone new when the time was right. I’ve been bereaved by violence or suicide several times in my life, so I had a different kind of lived experience to bring. It’s been sad, and often lonely. I’ll remember it as a deeply humbling time.

My daily work has centred less on autism awareness and advocacy, but I still managed a couple of events – a chat with the fantastic Autistic on Wheels in 2021 about what it’s like to be autistic in the workplace. For this year’s Autism Acceptance Month I hosted an online drop-in about autism and mental health, which was brilliantly attended and caught the attention of our local Adult Autism and ADHD service.

The event was a mixture of celebration of ourselves and a call to change; I reported on two recent pieces of research around autistic suicide and mis-diagnosis of adults. You can read the write-up here. Something that really touched me was trying to hold a minute’s silence for all the autistic people who did not get the help they needed in time, and finding that everyone in my group was deeply appreciative, and moved by it. It needs marking; there are too many.

Somatic studies

At the end of 2019 I took a huge, heartfelt leap and signed up for a module of training with the Institute for Integrative Bodywork and Movement Therapy. I’d been following the tide of interest in the soma with my own explorations of bodywork and movement over the last 15 years. All the classic somatic books lined up on my shelves; The Body Keeps the Score, When The Body Says No, The Body Remembers. Then I started this incredibly deep dive with IBMT and my appetite (and bookshelf) just grew, and grew, and grew! I discovered the work of Bonnie Bainbridge Cohen (and was lucky to attend a couple of her seasonal series of teachings). I gobbled up Linda Hartley’s books on body wisdom and somatic psychotherapy. I discovered new thinkers and writers on the deep mystery and mechanics of human form. I embraced learnings on human gestation, birth, anatomy, and the development of movement as a framework for the manifestation of our will in the world.

Authentic movement circle with IBMT

I ended up completing the full training over 3 years and am now completing my case study hours, working slowly towards Registered Somatic Movement Therapist. My second year essay was on somatic approches to ASC1. I am deeply touched by how being in movement, accompanied by a compassionate witness, can allow expression of deep personal truths and traumas, and bring potential for choice and repatterning. It has worked magic for me and my peers, who have become friends for life. I’ve managed to weave these teachings into my work. I see huge applications for neurodivergent folk, but I want to take things responsibly and carefully. This is why I opted for a longer training that leads to registration. Too many have-a-go heroes out there – and we can celebrate that, too – but I owe it to the people I want to serve to get this right. And so, it takes time, and care.

Anything else?

Well… yes! I’ve learned a great deal about loving and being loved (such a privilege and responsibility), relationships, neurology, nutrition. I’m reading Internal Family Systems theory. I’ve become a peer trainer with the NHS and bring somatic learnings to the management of anxiety, depression, and PTSD. I’ve gone back to the piano and am almost back to playing as well as I could when a teenager. Markmaking has formed part of my course, which has given me a new love of pastels and painting. I’ve watched my two amazing kids grow into a teenager and adult, so able to express their feelings, ask for help, and advocate for themselves. I’ve embraced open water swimming and last summer I co-facilitated 30 folk for their first try in the water to support their mental health. Being in wetsuit and swimming boots makes me feel invincible!

Scene of a picnic blanket on a flat sandy bleach on a sunny day. The sea is calm in the background. In the foreground is a book called "wisdom of the body moving" with a stone on top to stop the pages blowing in the wind. — Reading after a swim!

I’ve also often been overwhelmed, and desperate. Autistic people don’t enjoy change or ambiguity, and the world has served up hefty doses each day. Being so god damned interested in the world, quick to take in information but slow to integrate it, means I often get saturated. The pores of my sponge-system get logged, blocked, and heavy, and since I didn’t come equipped with a “tank full” cutoff or an overflow valve, I often need some time to integrate. It happens to us all, but when you’re autistic it can be stealthier and faster. I love that I know this about myself, and see it (mostly!) as a difference that needs adjustment, and planning, and care. Gratitude for our collecting learning (and unlearning) abounds. It’s such an interesting time to be alive.

So, there we have it. I managed to blog before 3 years was up! I’d love to hear how you are, what you’re up to. Drop me a line.

Warm wishes – Em

Cracking up & staying whole

Why cracking up with laughter is crucial for keeping it together

Blurred image of the author laughing very hard. — Wibble.

I used to wonder why laughter is such fantastic medicine, and since I never miss an opportunity to overthink all the fun out of something, it’s been a running quest for decades.

A few years ago, I saw Ruby Wax’s “Sane New World” tour after I was gifted her book. The first half of the show was a brilliant stand-up routine about neurotransmitters; what they do, and what can go wrong when they don’t. With funny stories and a hefty dose of Proper Science, we learned how we are each tossed about on the waves of our ever-changing, neurochemical soup-streams. It made mental illness feel much less like a personal failing, and more like a botched recipe. For me, that was a good thing.

The second half of the show was given over to questions and answers from the audience. Uncharacteristically for me, I beckoned over a runner and held tight to the microphone as I waited my turn. A squirt of cortisol about public speaking crept thickly, bitterly up my spine as other peoples’ questions were posed and answered. But I noticed that every time Ruby made us all laugh, my anxiety dropped, plummeting into my feet and dispersing almost into nothing, only to rise again when the giggling subsided. What was this magic?

When my moment finally came after ten, trembling minutes of “will I, or won’t I?” I stammered out that I’d always wondered what your brain looks like on humour, and how sitting here holding my nerve had gifted me a brilliant example of the way true laughter makes your whole body feel suddenly better. Did Ruby know which blend of neurotransmitters were released by laughter, and if so, how could I get the recipe?

She liked the question, but she didn’t know the answer, and opened it up to the floor. A learned scholar in the expensive seats gave an interesting answer about mode of mind, which wasn’t about neurochemistry and which I didn’t understand. (Fancy an autistic person not understanding mode of mind…) I came away still mystified, but happily so, loosened up and warmed through by hours of laughter and connection.

Humour, I’ve found, has been the best weapon in my arsenal against mental illness, and a lack of it is always a warning sign for me.

Dark or gallows humour is particularly tasty. In the 1990s I surprised everyone (including myself) by working for the police for some years, first in the control room (no, madam, you can’t report a lost wheelie bin on 999) and later as a business analyst (a promotion I was too young to understand no-one wanted if they cared about keeping their friends.) I spent time working across divisions and found that, the closer officers were to ground level, the darker the jokes would get. Scenes of crimes officers (SOCOs) always had the very best/worst jokes. Their office at Christmas was a joke that assaulted every sense – ceiling, walls and furniture entirely coated in tinsel, banners of celebration criss-crossing the windows, and a light-up Virgin Mary doorbell that played (what else?) Rudolph the Red-Nosed Reindeer. An entirely appropriate atmosphere when you’re putting together homicide stats for HMIC.

Closer to home, I lost my beloved Dad in a car crash almost 20 years ago. (Don’t worry, the funny’s coming.) The many tokens, flowers, and cards that flooded into the family home all landed like petals in the dark well of that impossibly painful first few days. Gentle words in pastel tones, hushed sentiments, apologetic visitors. But what gave me most relief was a beloved auntie arriving with a bottle of scotch, a copy of Roger’s Profanisaurus – and the willingness to sit and read aloud with me until our howls of laughter broke the shock and unlocked my first tears. They would have choked me far longer had she sent a “Live, Laugh, Love” postcard.

Enough sad stuff. Humour helps. My dearest friends have always been those with whom I can sink to my knees with laughter – and not care how we look. (My bestie Kate and I call this sinking, shaking sensation “wibbling.”) I’ve even forged some very unlikely friendships that have endured many years – all because we, say, once misheard a speaker at a conference, swapped a look, realised we had both misheard “willy,” and spent the rest of the speech clutching at each others’ elbows to prevent our giggles bursting out.

I keep a list of bookmarks that are guaranteed to make me laugh, and it’s used daily. I like childish things, mistaken things, over-the-top things. My favourites are wordplay and “misunderstanding” jokes. Me and my children have the autistic trait of sometimes taking things literally, and we often find the resulting misunderstandings hilarious – so jokes where others have done the same are most welcome – especially when someone misunderstands on purpose to cause mischief.

420k people are still wibbling.

It amazes me that autistic people are often thought not to have a sense of humour; indeed, my tendency to laugh uproariously was for some time a key factor in my not thinking autism applied to me. Robyn Steward and Jamie Knight covered this brilliantly in a BBC podcast. There are jokes that don’t make me laugh, though – mainly those at others’ expense, particularly when they highlight the deficits of a person or a group. I lose my sense of humour pretty quickly over those, and can kill the fun stone dead with my inability to join in. I can’t always tell if it’s affectionate. Teasing is a mystery, too. A boss of mine used to joke that “Emma just isn’t putting the effort in.” I knew he meant it as quite the opposite, and that he liked and admired me, but I could barely raise a chuckle, and sometimes teared up. Even though I knew it was a joke, even though I knew it was affectionate, even though, even though… it made no difference. Those words had been spoken and that made them true. My sensitivity in this regard is hard on me and hard on other people. I wish I could turn that function off.

Last night, after a tough day for us at work and at school, I tried to explain to my son what “don’t look a gift horse in the mouth” means. It took ten full minutes, several allegorical diversions, and lots of neighing. Rolling around together on the sofa, our bodies racked with laughter, was a delight. Later we snuggled in the garden by the fire pit, stroking heads and talking softly about the summer ahead. Would we have finished the day with that calm affection without first having cracked up?

Maybe it’s some sort of trauma release exercise – the clenching of jaw, eyes, and chest, then the violent shaking and noise-making. Maybe it’s the connection you feel when someone else “gets it.” Maybe, for someone like me who is particularly sensitive and prone to feeling left out, that release, that connection, is even sweeter nectar.

The one thing guaranteed to dull a joke is having to explain it. Maybe that’s why trying to make sense of the nonsensical – however confusing, however dark – is one of the silliest, funniest things you can do.

Coming to you live on the airwaves…

Paper Lifeboat joins a podcast and gets invited onto the “proper” radio

A few weeks ago, my friends at A.I.R. Team Global asked me onto their podcast as a guest to talk about my blog and my work.

I’ve been interviewed before for various campaigns and work projects on TV & radio, but this was my first time being on a podcast as “just me.” Luckily Rowan, Anna, John and Carl knew what they were doing, and made me feel right at home.

We covered some serious subjects, such as the gender gap in diagnosis, and internalised ableism, but we had a lot of fun, too. I even debuted my two-step seagull deterrent program, which involves weeing into a bucket and waving bunting on a stick. (I live on the coast and have spent the last 6 years trying – humanely – to deter seagulls from nesting on my office roof.) You’ll have to hear it to believe it…

A curious offshoot of this is that we’ve been invited to talk on our local radio station, BBC Radio Devon. Michael Chequer has asked us to speak on his evening show at 8pm today, Tuesday 2nd July. We’ll be talking about Team A.I.R. and our favourite musical decade. I’ve picked the 1980s – I spent much of my childhood overseas, and chart music from the U.K. was a lovely way to feel connected with home.

Tonight, I’m going to be the team chaffeur and cheerleader – it’s Team A.I.R.’s work that is in the spotlight – but I confess I’m feeling a little nervous about being on the “proper” radio as myself, rather than for something work-related.

Maybe I’ll take my crochet and a big sign saying “Don’t swear… or talk about throwing urine at seagulls.”

ABC, 123, HMRC

A very quick share today…

In my efforts to keep a family afloat as a single parent, I’ve often despaired at how convoluted and impersonal dealing with HMRC can be. Whether it’s a change to credits or the wrong tax code on your payslip, it’s an alien language. And it’s particularly challenging when you are anxious as all hell because the way the conversation goes will have such impact. You’re scared and confused, which is not a powerful position from which to advocate for your needs, especially when your executive function is prone to go offline rapidly in these conditions.

For those of us who don’t have the luxury of an accountant, a loved one who handles our finances, or the time to study it all ourselves, changes to taxation and credits are a real headache. Combine this with my (eroding) fear of appearing stupid or uninformed about anything, ever, ever, and soon you have an ostrich with her head stuck in the sand and just enough money to cover her now rather vulnerable arse. The final feather on the top is some needless shame about not earning very much at this single-parent, bereaved-by-suicide, trying-to-stay-afloat juncture of my life. Not attractive. Not the done thing to talk about earnings. Hide. Shush. Mask it away.

I’d often wished for a mentor to hold my hand through some of these processes using plain language, so that I could be sure I was making the best use of my hard-won income, and not being duped or ignored for any tax breaks or entitlements. And today I found it in a website.

Just have a read of the opening paragraph of The Low Incomes Tax Reform Group and feel the knots in your neck release a little. Here is a group of smart, just, proactive people who are making a difference to earners in this situation right now. They’re also campaigning for greater clarity in taxation. Imagine that – a taxation system that truly helps those who help themselves.

This would be a good moment to say thank you to all the volunteers and pro bono folk there who made this work, especially given that it’s Volunteers’ Week. If anyone who helped make this happen is reading – thank you from me, my children, and the people I work with who will be using these resources.

I’m off to ruffle some feathers…

Making movies (and masking!)

On being trusted to teach others about autistic masking.

Thanks for the brilliant response to my blog post on 10 milestones of autistic self-acceptance. I promised a follow-up article about each one and that’s yet to happen, but for a lovely reason…

The Autism Plan asked last month if I would help them to produce a video about social masking. Their request came in while I was on holiday, walking in a very genteel National Trust garden. I reckon Sir Francis Drake’s ghost was rattled by my very loud “yayyyy!” and skipping about with excitement. (The National Trust volunteers certainly were.)

I was deeply honoured to be entrusted with advising others on the subject of autistic masking – something I have done for much of my life without realising, something that’s had a very negative impact on me, and been confusing for others. I personally believe that masking (for any neurotype) is the biggest contributor to loneliness, and may explain the higher suicide rate in autistic women. It’s important, and it’s misunderstood.

Spending a week consolidating all my learning about social masking and its impact was of huge value. Distilling reams of notes and research into a few short video clips required discipline, and challenged my tendancy to get distracted and waffle. I managed to keep it succinct, but I’m lucky that they have a great editor to help me!

I’m sharing an excerpt on Facebook from the training video they’ll be offering soon. As for the 10 milestone articles, an article about social masking follows soon. I can’t wait to offer a little comfort and guidance to all of you working so hard to “get it right” socially.

It’s okay be to someone who squeals and flaps and cuddles flowers and trees in public. Really it is.

Am I Autistic? 10 Milestones from Self Awareness to Self Acceptance

This Autism Awareness Month, Paper Lifeboat shares 10 personal milestones from autism awareness, to autism acceptance.

It’s the 30th of April, and another Autism Awareness month, the annual marathon of campaign, debate, and fundraising, is drawing to a close.

Every year I’m struck by how far the conversation has moved forward in a short space of time. This April, the movement towards autism acceptance (evolving out of awareness) has been striking. Awareness has brought us a long way, but it’s only a starting point towards actual change. You can be aware of something without taking any positive action. And you can be aware of someone’s differences or difficulties without doing anything to accommodate them, too.

We’ve all heard by now that “if you’ve met one autistic person, you’ve met… one autistic person.” There’s infinite human variety in how each person is made up, how they were brought up, and how they show up. This is as true for autistic people as it is for any other group. I’ve particularly enjoyed friends on Twitter driving the point home by adding “Awareness Month” to their names this year (e.g. “Jane Smith Awareness Month.”) Awareness is passive, even indifferent. Being aware that an individual exists gives little insight into their experience.

Acceptance takes us to a personal level. It asks us to nail our colours to the mast and declare – are we in, or are we out? Do we accept that autism exists, and are we prepared to accommodate and adapt to that?

Reader, I’m taking you to a very personal level, if you’ll forgive the self-indulgence (self-indulgence on a blog! Whatever next?) I’ve found the journey from autism awareness, to autism acceptance, has run parallel with a deep journey of self-acceptance. And even though learning that I was autistic was a huge relief after decades of yearning for answers, acceptance still didn’t come easy.

Since starting this blog, dozens of people have reached out to ask for my help along similar journeys. Often they are becoming aware of autism in themselves, or someone close to them, and they are usually confused about how to become more accepting.

These conversations got me wondering about what I could offer to people visiting this blog who are just starting out.

In the spirit of “we’re all individuals,” the best insights I can give are some of the key milestones in my own journey to accepting my autistic self. Just like individuals, I found them all valuable, infuriating, or comforting by turns.

Each milestone was marked by questions that came from a lack of autistic acceptance. They were cruel, fearful, possibly even offensive. A life-long lack of self-belief takes some time to soothe. But there was no avoiding them. Like the bear hunt, I couldn’t go around it, I couldn’t go over it… I had to go through it. They’re listed here in no particular order; importance shifts depending on the circumstances of each moment.

Ten Autistic Self Acceptance Milestones

1 – Feeling entitled to call myself autistic. Am I making it up? Does it really matter? Who is the final authority? Why do I want a diagnosis?
2 – Dismantling my internalised prejudice and ableism. Is it a “real” disability? Am I entitled to ask for help? Don’t others have it worse?
3 – A lifelong condition. Am I allowed to grieve for a “normal” life? Will it ever go away? Is this as good as it gets?
4 – Coming out as autistic. Will I hurt loved ones? What about my career/relationships? Will people disbelieve me, judge me, or be cruel?
5 – Separating autism and mental health. Can I be autistic and mentally healthy? How do I know when I’m ill? How do I avoid becoming ill?
6 – Educating myself about autism. Who is a trusted authority? What’s the science, where’s the research? Does anyone agree on anything?
7 – Sensory adjustments. How can I befriend a confused body? What have I numbed off from? What are my limits? Can I stim to soothe myself?
8 – Making peace with masking. When does it help me? When does it harm me? What’s my true “yes” and “no?” Am I authentic? Who the hell am I?
9 – Finding my community. Who accepts me? Who doesn’t, and do they matter? Do online communities help? How should I socialise?
10 – Executive functioning. What is it? What helps, and where do I get that help? What are my strengths and weaknesses? Am I just lazy and stupid?

I’m pleased to say that I’ve made huge progress in every one of these areas, and will follow up with a positive (or, at least, a kind) response to each question in the coming weeks.

If you’re moving from awareness to acceptance of someone else being autistic, maybe these milestones will give you some insight into what they could be wrestling with. Feel free to use this post as a conversation starter. Maybe you’ll notice a milestone they’ve been quietly sitting on for a long, lonely time.

And if you’re on your own journey from autistic self-awareness to self-acceptance, I hope you take heart from me laying bare my own starting point. A few short years ago I didn’t think I had a voice at all, or the right to stand up for myself in just about any area. I thought I was broken, beyond help, an awkward person who didn’t deserve any special consideration.

I don’t believe those things any more. Autism is an intrinsic part of me, and accepting my whole self means accepting autism. It’s been a gift. I’ve come a long way – and so will you.

Being a problem eater – when it’s hard to swallow

Show a “problem eater” some love this Eating Disorders Awareness Week

Fruitbowl eclipse

This National Eating Disorders Awareness Week (25th February – 3rd March 2019) is focussed on two of my favourite subjects – self-acceptance, and smashing stereotypes. With this in mind, I’m writing today about a less well-known eating disorder that probably dominated my early life, back in the days when we didn’t have all these disorders and instead we “Just Got On With It” (“It” largely being feeling horrible and lonely.)

ARFID (Avoidant/Restrictive Food Intake Disorder) often centres around difficulties with the sensory or mechanical processes of eating, rather than difficulties with how food affects emotions or body shape – and it’s common in autistic people.

“Stereotypes would have you believe that eating disorders are not serious illnesses and they always take the same form. These stereotypes are dangerous, they discourage people from seeking help… and it makes them harder to be spotted by the sufferer or a loved one.”
Beat Eating Disorders UK

I was a “problem eater” until my mid-twenties. A highly restricted repertoire of foods I could stomach, combined with difficulty swallowing and a tendency to choke, made mealtimes a several-times-a-day flashpoint. I could count on both hands the few things I could swallow comfortably, and I had to chew for a long time before anything would actually go down. Food went “the wrong way” constantly, especially if I disliked it and couldn’t bear it to touch my tongue. My plate would always be full long after everyone else’s was empty. I was thin, weak, and tired.

How this started, I couldn’t say. What I can say is that my difficulty eating was never about my body image, weight, or calorie intake. The ravages of anorexia and bulimia were not, and never would be, known to me, and for this I am grateful. Nevertheless, I soon gained some labels of my own – fussy, picky – a problem eater. What was happening for me was a generalised fear of ingesting food, and it comprised of:

sensory difficulties with the textures, smells, tastes, and even sounds of food
motor difficulties with chewing and swallowing
the pressures of eating at the same time as socialising/talking
food becoming an emotive, loaded subject, and deepening the cycle

I quickly learned that “problem eating” was a source of embarrassment and shame. After all, what do families and friends do when they gather together, to celebrate or just to catch up? They feast; they sit in a circle and offer their best food to each other, they share it out, appreciate it, congratulate the cook. Everyone feels warm and fuzzy and full. But for me aged 10, a typical gathering would go like this:

Arrive at the event as full as possible and fill your pockets with snacks beforehand if you can
Try to get a seat at the edge of the table so you can sneak away
Find ways to hide/distract from the fact that you’re not eating – talk too much, bring a book to the table, get someone else started on their favourite subject
Hang around and help clear up so you can grab leftovers you can tolerate while no-one’s looking

Despite all my careful planning, the inevitable moment would come. Someone would call attention to my not eating, and fear would strike me cold, especially if it came with admonishments for my parents. “Why is she not eating? I’ve gone to all that trouble…” And suddenly, with a red face and blood whooshing in my ears, my still-full plate would sit there between us, silently signifying my struggle, my hunger, my shame.

A notebook gifted to me in 1986 (and my annotations!)

The connotations of not being a “good eater” are harsh: Ungrateful. Spoilt. Rude. All the things I was not. And parents of “problem eaters” don’t fare much better: Indulgent. Uninformed. Neglectful. And yet, my throat simply wouldn’t swallow more than once per effortful minute, however much I willed it to. Other times, I could get food in, but then it wouldn’t stay down. All these strong emotions and social codes only served to compound the initial difficulty with psychosomatic anxiety – and before long, it became an insurmountable, impenetrable, conundrum that no-one could fathom. In the meantime, I was still hungry all day and not sure what to do about it.

As a young adult, I had more agency, and at first, I simply avoided any gathering that might involve food. I’d abandon a lovely day out with a white lie about having promised to eat elsewhere (the promise actually being to eat by myself), or I’d arrange meet-ups between mealtimes. But I was growing up and finding my own way, and the world was changing, too. Cooking programmes were coming into vogue, and I found I was curious about trying foods I’d never heard of before. Then I realised – this was my opportunity to completely set my own menu, times, and eating environment.

And so it was that slowly, carefully, I expanded my repertoire. I started exploring recipe books and trying out things that were just a little different from my usual fare. The important thing was, the shame and emotion were taken out of eating. Alone, I could eat at my own speed. I could read at the table or watch TV to make consuming less… all-consuming. I didn’t have to perform the epiglottal aerobics of speaking, swallowing, and breathing at the same time. And if I couldn’t eat something, no-one would be offended or outraged (except, perhaps, my food budget.) It wasn’t quick – it probably took about 3 years – but it worked. The total, self-caring agency was the key ingredient of my success. I was worth good food, and I was worth the investment it took to access good food. So what if it took me a little longer?

Nowadays I have somewhat of the opposite problem – I love food, and there’s almost nothing that I don’t like to eat! The key thing is I have full agency about what and how I eat. I enjoy going out to eat with friends – but my plate is often left half-full, maybe because we’ve been talking a lot, or because something was hard to swallow. And if I’m meeting someone for the first time in a new place, I’d rather food was off the table completely. It’s not because I’m ashamed (well, perhaps just a tiny bit, still.) It’s because I now have four decades of evidence that I struggle in that scenario. And that’s plenty enough evidence for me to choose what works. It’s even become an early-warning system for me. If I’m struggling to swallow my food, it means I’m becoming overwhelmed, and need to slow down in other areas, too. I quite literally can’t process anything for a while.

These experiences have served me incredibly well as a parent to two people who also struggle with food. There’s no denying that the challenge of feeding such very different people can be frustrating. The bottom line? I look for every opportunity to diffuse unnecessary emotion around our mealtimes. If someone doesn’t want to eat something, that’s all that’s actually happening in that moment. No need to pile on messages of shame and blame. No need to wring my hands about being a less-than-perfect parent.

Food and health go hand in hand. To make that a healthy relationship, we should challenge ideal “meal images” just as we challenge ideal body images. Meals are like clothes – one size does not fit all. Here are some of the ways I apply this to make mealtimes at home less stressful:

Make peace with a limited repertoire. So your son will only eat peas and no other vegetable? So what?! Peas are excellent. Bring on ALL the peas.
Ensure that every meal has at least two things that each person can happily eat so that no-one ever leaves a meal feeling hungry – even if it makes for some unusual pairings. Who says you can’t have bread with a stir-fry, or corn-on-the-cob with a roast?
Serve food so that everyone can choose the components they like; keep things separate on the plate, or serve up buffet-style in the kitchen straight from the cooker – no serving bowls to wash up!
Don’t compare eaters. Don’t single someone who has no trouble eating as good or “better” than a person who is struggling. Shame is a terrible motivator.
Put a weekly meal plan somewhere visible so that everyone can see what’s coming tonight. Better still, let them have a day of the week where they set the menu. What they actually want might surprise you!

This doesn’t mean that trying new things is completely off-menu. Helping people discover food is enriching. However, this works best away from the pressured environment of a mealtime (particularly a big family event, or eating out.) Here are some things that have helped people I care for to expand their preferences:

Cooking a really special meal just for myself or a guest, asking the kids to help me prepare and serve it, and casually offering, just once, a taste or a dip of something new – without any pressure to join in.
Learning about the “science” of food preparation. Why is a roasted potato so different from a raw potato? Observe the differences – with no pressure to taste them.
Appeal to logic by explaining the elements of food and how they help the body. Learning about iron, haemoglobin and the funny shape of red blood cells is much more engaging (and logical) than “because it’s good for you.”

Finally, if you care for someone who is a “problem eater,” recognise that much of the problem might actually be… yours. What preconceptions and anxieties are you bringing to their difficulties? How is your fear of being judged by others clouding the issue? Could a fundamental thing like difficulty swallowing be what’s really going on?

From Beat Eating Disorders UK
https://www.beateatingdisorders.org.uk/uploads/documents/2017/9/tips-poster.pdf

Nutrition and health/mental health are so intricately connected. Let’s make a pledge this week to educate ourselves about both – and let’s start by showing a “problem eater” some love and understanding. (Especially if that person is you.)

Beat Eating Disorders UK Helpline – 0808 8010677

National Eating Disorders Association (US)

National Eating Disorders Collaboration (Australia)

Believing your own nose

I’m on my fourth day at home with not-quite-flu and thought I’d capture a quick post about how complicated self-care can be. I’ll have forgotten once I’m better. Here’s why…

Being able to tune in to what your body is telling you is not the same for everyone. I find it very hard to understand the messages my body sends me (and working to improve this has given great results.)

Let’s take a very simple example. It’s embarrassing to admit, but sometimes I can feel very irritated and not myself for a couple of hours. Eventually I realise that what’s at the bottom of this is that I actually need a trip to the loo. Yes, I just admitted that publicly. When I worked that simple thing out, it made a huge difference. This is especially true in an unfamiliar environment where the loo might be as yet unmapped. Like a baby learning object permanence, if I don’t see a loo, then the concept of loo has vanished from the universe, and I’m left careering aimlessly through corridors like Danny in The Shining towards heaven only knows what.

I’m exaggerating for effect, but it’s a good illustration of how taking care of basic needs can help to manage stress. Learning to factor in loo breaks has made a huge difference to my overall anxiety levels. I can’t rely on my body to send me signals in a timely way that connects to the appropriate action, and so I have to build in exo-reminders.

When I think back to my childhood, I worried about what my body was doing a lot. If I detected something in me was off-kilter, I needed advice about it. It probably looked like hypochondria, but was actually requests for information. Why have two of my toes turned a deathly green? What’s making me wheeze all of a sudden? How is my nose producing all of this… You get the idea. It helps that human biology is fascinating, and miraculous. All children have this natural curiosity about themselves. I suppose some are just better able to connect with the changing weather inside their own system, and adapt to it naturally, whereas others are left hot and bothered without making the connection that their experience would improve considerably if they just took their jumper off.

So here I am, a grown adult, in bed surrounded by lemon drinks and tissue boxes. It took me a full 36 hours to discern that the reason everything in life had suddenly become ten times more difficult was simply that I had a cold (followed by a little period of wondering whether it’s socially acceptable to have a cold and what the correct response might be, but that’s a whole other can of Lucozade.)

However old and wise I get, I’m still alarmed when my body misbehaves, and it takes me a while to connect the dots.

If this resonates with you, my advice is:

Learn how human bodies work. You’d be amazed how much something like a basic understanding of the sympathetic nervous system can help you in the throes of a panic attack.
Check in with yourself often, using an external reminder if necessary. Are any of your systems misfiring? Is anything painful or uncomfortable?
Forgive yourself, over and over and over. It’s really bloody irritating to need this level of micromanagement of your own body. Getting annoyed with yourself won’t help. You’re a warrior for keeping at it every day.

I’d usually link to resources to help readers, but will save that for another day when I’m feeling better. For now, I’m noticing my sore throat and fuzzy head, and going back to sleep.

(See? I’m learning!)

Tweets, quacks and… what noise does a cygnet make?

Last year, I discovered the #actuallyautistic community on Twitter. These brilliant folk have been the source of much information, validation, and friendship.

One brave soul from their ranks noticed that she and I lived close together, and suggested a meet-up. Having both acknowledged that socialising with strangers was usually very low on our to-do lists, a procrastinate-tastic period followed. Then, thanks again to Twitter’s #actuallyautistic community, fate gave us a nudge with an event that seemed designed exclusively for us… in the shape of “The Duck.”

Penned by Rhi Lloyd-Williams of Autact Theatre, this one-actor showcase by Lucy Theobald spoke to us both in a voice so clear and pure, a voice that said, “no, it’s not just you.” Delivered as a monologue, it describes a young autistic woman’s attempts to come to terms with the masks others wear, and discover which might fit her. By turns funny, hopeful, and heart-breaking, it blends delicacy with a deep dive into how it feels to be at odds with the world, and yet madly in love with it and wanting to belong.

“The usual representation of autism is not someone like me. They’re usually children and male. It’s so important that we see autistic women out there too. That representation is vital.”

Rhi Lloyd-Williams

And so it was that we two Twitter strangers quacked happily with ideas and relief right through the 3 hour round trip to see it, freed up by the permission the show gave us to tell our stories and connect.

A sliver of my ever-changing Good Things Gallery

The flyer has been pinned to my office noticeboard ever since. It’s now a part of my “good things happen” gallery. The reverse even has origami instructions to make your very own paper duck. (Wouldn’t that look nice next to a paper lifeboat..?)

The Duck is doing another fly-past near me soon; this time, to Exeter’s Cygnet Theatre next Friday 15th February.

I’ve already bought my fistful of tickets to see it again, and can’t recommend it highly enough.

If you think you’re a duck and would like to come, but are lost for someone to sit with, drop me a line – maybe I’ll see you there!

Before and after

Travelling home from today’s National Suicide Prevention Alliance Conference with a head full of ideas and a heart full of hope. Lots to share in the days to come; tweeted some highlights of the day as it unfolded. For now, I’m (happily, justifiably) wiped out.

Here’s the before and after pictures!

9am – raring to go with Chukumeka Maxwell, founder of ATPS

After – decompressing on the train with crochet and crumbles!

Huge thanks to Action to Prevent Suicide for inviting me.