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.”

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.)

Wisteria, you’re breaking my heart…

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.

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

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

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?

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)