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.

Paper Lifeboat Awareness Month

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.

Monty Python Awareness Month

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

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)

Let the nonsense flow

Pattern made from upholstery on the Victoria line

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.

Rupert Sheldrake

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.

How many lifeboats is too many?

Starting Paper Lifeboat has taken me a long time. Five years, to be exact. One of the things that’s held me back is wondering whether the world really needs yet another autism and mental health blogger. Aren’t there enough of us out there already? Won’t my words just sink like a stone in the churning waters of voices?

This is great fuel for an inner critic. Mine’s been admonishing me that there are other things I Really Should Be Focusing On. Such as the impending void of Brexit, climate change’s implications for our children, and the refugee crisis. Brains are helpful like that; they love to remind you how impotent you are in the face of major, systemic problems. And of course, that impotence is hard to argue against. It taints everything with pointlessness. Before you know it you’ve been under the duvet for three hours. And so the challenge becomes to Do Something Anyway.

So it was that, on Sunday, I took myself off for a walk by the sea. I’d taken this blog down a day after starting it, terrified that telling my story was going to bring Brexit-sized calamity down on myself and everyone I loved (thanks, brain.) Grey seas battered the prom as the soggy January wind blew all over my catastrophising. The weather’s solidarity with my mood made me feel a little better, but soon I was quite cold (having failed to plan my outfit properly for the weather, basing it instead on Just Bloody Well Getting Out For A Walk Before I Sabotage Even That.)

“It is surprising how many unoriginal thoughts we have”

Martine Bachelor

And so I dived into a place I have probably walked past twice a week for many years without stopping – the RNLI gift shop. Inside this teeny space crammed with cheery goodies sat two women whose ages I would not dare to guess at. Dressed in jaunty scarves and woollens, they chatted brightly, Britishly, about the weather and the vagaries of their new kettle (the hot topic of the morning). I was comforted by the tradition of it all, and soon we were chatting away about their new stock.

Making suitably interested noises about their gift cards, tote bags, and travel sweets, I suddenly realised that their branding colours were the same ones as I’d chosen for this site. I found myself staring at the children’s gifts in their navy and orange livery, and when my eyes settled on a lifeboat itself, I started to laugh. I was in a freaking navy and orange lifeboat shop. A shop that, as a U.K. seaside dweller, had been in my peripheral vision for decades. I hadn’t set out to copy them, and yet I totally, if unconsciously, had.

There are very few original ideas in the world. We all soak up influence like sponges, and in turn, influence more than we can understand. Maybe it’s time to accept this and take my little bit of influence out into the world after all. It might not be new, it might not be original. But the vanity of not offering anything at all is a poor excuse not to try.

The following day, I re-published Paper Lifeboat. It has already reached 9 countries and over 600 people have read so far. Turns out there’s a need for more lifeboats. An endless chain of demand and supply, in fact. I’d been demanding something like Paper Lifeboat for so long. Time to get over myself, and supply it.

I’m going to change my colours eventually – it’s the right thing to do (not that the RNLI need protecting from my mighty empire!) As a peace offering in the meantime, I bought some of their lovely gifts.

I think I’m going to need more of that tea…

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!