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.
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.
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.”
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.
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?
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.)
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.
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.”
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.
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..?)
Today, a friend messaged me from their mid-morning Monday desk to say that they were struggling. (This friend thinks they might be on the spectrum and is wrestling with whether that warrants further enquiry. People in this situation seek me out often, and I actively welcome it.)
Their pleasingly logical plea for help came with an insistence for me not to worry about them; however, if I could send them a couple of tips to get through their messy, stressy Monday, they’d appreciate it… sorry to have troubled me… don’t worry if I don’t have time… and other adorable, relatable minimisings.
I shared a couple of quick fix check-ins. The Pomodoro technique. The sensory sweep. (I’ll write about these in time – links will appear across these posts before too long.) However I sensed something more fundamental in their offloading.
Their stress arose from a situation in which other people were not making much sense. And when you’re prone to thinking you’re defective, it’s all too easy to assume that any deficit of understanding lies squarely with you.
So I offered this: Consider the possibility that other people aren’t making sense in this situation. Just because you’re having difficulty understanding something, it doesn’t automatically follow that it’s been properly explained and the fault lies with you, the receiver. You are entitled to seek clarification. You are allowed to ask the same question twice.
“The beginning of wisdom, I believe, is our ability to accept an inherent messiness in our explanation of what’s going on.”
Sometimes, no-one has the first idea what they’re doing. Sometimes a whole business meeting can go by with nothing having been achieved or agreed on at all beyond a little power-wrestling or grandstanding.
Yes, it’s taken me twenty five years of working life to fully understand this. When someone is only making 10% of sense, my sense-seeking mind has a tendency to leap forward 90% to make up the shortfall of understanding between us. Sometimes this speeds things up; sometimes, it develops ideas. Sometimes though, it misfires and annoys them – either because I’ve drawn the wrong conclusion, or frankly, been a smart-arse.
I’ve learned (or rather, am learning) to quiet that internal voice that insists on perfect sense from others. It’s not my job to restore everyone else’s thoughts and actions to order, and it’s an arrogance to try. There are times when, if nothing much is at stake, the quickest route to sanity is accepting that an exchange simply made no sense to anyone, and letting that pass by unremarked. And of course, a pleasing side-effect of letting other people not make sense is that you give that permission to yourself, too. What a relief.
My correspondent today was twenty years my junior. I hope they went back into their day feeling a little less wrong-footed.
Later that evening on the tube (I’m in town for tomorrow’s National Suicide Prevention Alliance conference) I found myself propped against an open window between carriages. Each time the train set off, tepid air gusted through, carrying chatter and scent from all the carriages ahead. At first I winced and dodged it, fringe whipping at my face, eyes stinging as I turned this way and that.
Soon I found the right angle. With my face pressed full into the breeze, the warm scent of working machinery and discarded coffee cups pushed my hair away from my closed eyelids; a temporary figurehead in winter coat and messenger bag. I felt the pressure give way as we all surged through the tunnel, together temporarily on our many missions, carrying tiny payloads of potential to our myriad destinations.
It’s a wonder, really, that anything synchronises at all. Don’t exhaust yourself trying bring it all to order. Save your energy for those times when directing the flow could make a difference.