The Curious Incident of Denying the Borrowed Voices

Writing about autism can be controversial. But imagine, imagine that the process around Mark Haddon’s “A Curious Incident of the Dog In the Nighttime” had happened with some other condition than autism. I’m going to use an example of a physical illness which was freighted with controversy and wrapped up in competing agendas. This is not intended to be a metaphor of equivalence. But one that allows us to look at a situation from a different angle.

So, imagine a writer wanted to avoid all the associations and controversies around HIV but just write about an individual’s experience of it rather than making them a symbol.

(A laudable aim)

So they don’t say their fictional protagonist has got HIV. Maybe they call it an “Auto immune condition” although the book jacket DOES refer to it as HIV.

(confusing, but okay…I suppose writers don’t always have confidence to have control of things like marketing and publishers would want to cash in).

The novelist reads some articles about people with HIV but doesn’t do any specific research, or talk to people with HIV because “imagination is better than research”

(Hang on, some alarm bells are jangling now) 

They therefore write about some aspects of HIV which are not actually a feature of the condition. They also focus on the group most associated with HIV in the West- gay men, and for good measure, end up reinforcing some of the caricatures from the most stigmatising fictional narratives about the Aids epidemic.


But a good thing is that this main character is actually likeable and relatable and is therefore taken up (except by people with HIV) as a positive representation of the illness. It does engage some hearts and minds and make people recognise that they weren’t as aware of the condition as they could have been. The protagonist’s point of view makes people realise that “normality” is a relative concept and cuts through some of their judgments and prejudices.

(Nothing’s ever simple is it?) 

The book becomes a bestseller and a classic, and it turns out some counsellors and patients are basing their conception of HIV on the symptoms of the character in the book

(Thaaat’s not good)

The author of the novel disavows this use of his book, and points out that he never speaks at events on HIV because he isn’t an expert on it.

(But his book has become inextricably associated with it. Is that his fault?) 

In a Twitter debate about whether it’s okay for novelists to write from the point of view of minority characters, he said this week:

“But when an entitled writer borrows the voice of someone who’s been denied that voice in real life, and clearly has no understanding of this injustice, the writing clangs like a cracked bell.”

(Hang on, that’s a bit ironic)

Yes, that’s what I thought when I read it. Let us kill the metaphor and return to reality. Mark Haddon wrote an immensely popular book about an engaging Aspergers character, Christopher Boone. He did not engage with autistic people to do this. Autistic people are still massively under represented and under voiced in employment, in the media, in the arts and in the telly programmes (and plays- the first autistic actor to play the character in the play of the book was engaged last year after the play had been running since 2012 ) churned out about them in which they still, mostly, do not star. They are spoken about not to, or with. Haddon passionately believes that “Labels say nothing about a person, they say only how the rest of us categorise that person”; His Blog).    The irony is, that his attempt to avoid tokenism and labels has led him to derive a character from caricatures, archetypes and stereotypes of Aspergers, rather than from the complicated, multiple, layered realities of it. It is true that the labels do not currently do justice to autism. But what we need is more writers who are willing to listen to the voices of actually autistic people. And more actually autistic writers.

This blog by Greg Olear is good on what it is about Christopher Boone that “clangs like a cracked bell” for some autistic people – but mainly the damaging thing is the continuing reiteration of Aspergers people as being solitary savants who are cold and literal. Here

New, powerful writing is coming through and I can recommend, for example, this piece by Joanne Limburg who wrote the poetry collection “The Autistic Alice” and is now working on a piece for a new anthology for Unbound about Otherness. In which Othered voices ring out for themselves. Excerpt

I engaged in some Twitter back and forth with Mark Haddon after that Tweet and I’m not sure we got anywhere really. In my “Not out” life as a writer we’ve done some work for the same organisation and it would be good to talk further about this. It doesn’t seem very productive to retrospectively criticise the decisions he made around the writing of what has become a very well loved and influential book. I just wish he would show some awareness of how very silenced autistic people still are.

Of course, these things are never, ever black and white:

Him- “I’m genuinely sorry you feel the novel is unhelpful. but I have many letters from readers for whom it has proved profoundly helpful. i can only hope that the latter outweighs the former”.

Person Centered Therapy and Autism 

 I think my mental health is fairly average, which sounds like an odd thing to say, but there we are. Basically I mean I’ve had short periods of depression as reactions to upsetting events and bulimia on and off for ten years from my teens (untreated, though I did mention it to Doctors a couple of times). However I’m generally on a reasonably even keel mood-wise, with a higher baseline of wellbeing since I’ve had a stable relationship/house/work in the past ten years. 

As lots of autistic people have mental health conditions (partly caused by the stress of being autistic in a mostly non-autistic world) then many autistic people have had therapy. With or without a diagnosis. I’ve had quite a lot (all pre diagnosis), after originally doing a counselling course at college and joining a therapy group. This had the inevitable subsidiary function of helping me understand people and their motivations, as well as my own. I’m posting about this now because I realise that therapy has had quite a big impact on how I’m able to “pass” as neurotypical (for better and worse), but also on how I’m able to accept myself as autistic now. 

Mostly, the counselling I trained in at college  and had with therapists, was person-centred. That’s based on the precepts of the humanist psychologist Carl Rogers. It’s sort of the opposite of the behaviouralism (reward or punishment based learning) underpinning ABA & other autistic therapies. It believes that a client will grow towards being who they are in the context of a warm, genuine, empathic relationship with a therapist whose warm, honest acceptance, deep listening and reflecting-back of a client helps facilitate their warm, genuine acceptance of themselves. It’s powerful stuff. It unfolds gradually over time so is nowadays less attractive to finders and healthcare organisations than the quick fixes (some would say patches) and “measurable” outcomes of therapies like CBT. 

I think I had accidentally found a very autism-friendly therapy-particularly with its emphasis on honesty and “congruence”-that is aligning how you experience the world with how you actually act. Also, shifting your value system from what other people/society think you “should” do, to what feels right to YOU. It was sometimes messy, confusing, frustrating and chaotic. As well as exciting, supportive, mind and heart-opening and empowering. It worked in conjunction with me becoming a writer and performer and facilitating other people to do those things. I tried to do that in a person-centred way too. It gave me a set of “rules” for being who I am. (Including permission to ignore the rules about who you should be!). Much as I think that it’s a bit crap that neither my GP or the local autism centre are able to signpost me to any post-diagnostic counselling, I feel lucky to have been equipped with some great tools I still draw on everyday. I’m also aware of how privileged I was to be able to pay privately for sessions over a period of about ten years (Between £35-50 for the individual sessions. I didn’t have a big income but at least had one, & saw it as a worthwhile investment in my wellbeing). 

It feels important to mark this as an important part of becoming who I am now. There ARE alternatives to behavioural therapies which can help people be less anxious about who and how to be in the world. This post is more abstract than I’d wanted so I’m just going to end with some fragments I remember from sessions and courses:

The tutor lets us into the room for our “Introduction to Counselling”. “I’m really tired” she says, yawning. I’m baffled by how she isn’t faking perkiness-and intrigued. When she takes us through the “core conditions” of person-centred counselling I realise she was being “congruent”- aligning her inner self and her outer self. I become the world’ biggest fan of congruence. 

If the counsellor forgets to do a “check-in” where all the group members talk about how they’re feeling, I nudge him so that we all do it. I love knowing how people are feeling rather than having to guess. My check-ins ramble and digress. Sometimes someone pulls me up: “But how are you actually feeling?”. I struggle to find where feelings might be. 

Someone else in the group talks about feeling things in her tummy. She tells us how she wore a crop top to the gym after realising she’d been made to feel ashamed of her stomach when she was little. I begin to realise that my own tummy has feelings in it sometimes. 

In my first session with a new therapist, she stops my long, rambling, digressive monologue complete with many sentences that start but din’t finish. She looks horrified. “Is this how you actually talk?” she asks. (NB: that wasn’t a very person-centered intervention). 

In college, we pair up. Our partner talks for five minutes about a problem they have. We must listen & then feedback what they have said to them, including things we perceive they didn’t say, but implied. My partner listens to what I have heard and confirms what I had picked up: “It’s so much clearer when I hear it from you” she says. “You listening to me has helped me listen to me”. I start to take notice of stray thoughts and feelings that come into my own head, buoyed up by the knowledge that I can read people. One day the phrase “Midwives of silence” comes and I know that it describes this group. 

A therapist tells me I seem agitated. (I didn’t know I was agitated). He suggests I do some deep breathing. I take deep breaths. I begin to feel more relaxed. “Not everyone learns emotional regulation from their parents” he says. As usual, I look unfamiliar phrases up in the psychotherapy books I’m buying by the handful. Now “emotional regulation” isn’t just words, it’s the calm after those breaths. 

I recount some traumatic things that have happened to me. The therapist tells me I don’t seem to have feelings about these things. I know that I do, but I can’t tell him where or what they are. “I feel full/blocked/numb” becomes my way of wanting to convey this. “These feelings are behind a dam/buried/an unexploded bomb” I might later say. A downside of this talking therapy is that it lets me escape into talking, rather than feeling. Is that sometimes therapists facilitate talking rather than feeling. 

A final metaphor: Imagine a console full of buttons and switches. The controls of my brain-body, like in the Pixar film “Inside Out”. Counselling means someone is helping me label the switches. “Sadness” for example, “Happiness”. Once labelled, the switch lights up more. Some others ping on and off in an irregular pattern. Me, and the other witnesses (counsellors/other people I’m congruent with) notice those lights. We point at them. They begin to light up more, for longer. To join up with other lights, forming circuits. “See that one?” someone says. “That seems to come on when you feel left out, it connects to that sensation like an elevator dropping in your stomach”. Another circuit is formed. Sometimes all the lights flash at once. Overload. I breathe deeply. The lights settle,  twinkle like a city at night. Being seen and heard by others woke me up to myself (and others). There is still so much to explore. 

Autistic at the Doctors 

First trip to the doctors since diagnosis. Not the GP who knows about it (I went private after realising an NHS diagnosis would take ages & I was unlikely to see an expert in women), but another at the same surgery. 

I imagined something might flash up on his screen and he would suddenly move into patronising mode, or helpful mode or something. In the end, he tripped my aspiedar himself immediately. 

Our interactions were awkward, and it was hard to tell how much was him and how much was me. I did realise how often I feel like this when dealing with medics though. I was there because I’ve had a sore throat for five days and wanted to check it wasn’t an infection. 

He made a vague gesture which turned out to mean “look left”. I did that and then, without explanation he put a thing in my ear. “Oh?” I said. “Taking your temperature” he explained. Then he asked me to stand up. Held a stick in front of me. I worked out he wanted me to open my mouth & that he was going to depress my tongue. “aaaah” he said as he did it. I didn’t join in. “You’re the one supposed to say aargh” he said. “You were already doing it” I riposted, finding both our awkwardness quite funny. “It’s a virus probably as there’s no pus, just some injection”. “Injection?” I queried. “Slight redness” he said. 

Because post-dx I’m more alert to the ways in which I’m awkward, I noticed them. But I realised that what would have been good practice for me as an autistic person would be good practice for EVERYBODY. It’s really not rocket science or special treatment or adjustments.  Give clear instructions. Tell people what you’re going to do and why. Don’t use Doctor jargon. He might see twenty throat viruses a week, but it was my first one and I don’t go to the Doctors often enough to be familiar with their equipment and procedures (taking your temperature in your ear?!).  In other news, GPs can be autistic. Though that could just be my aspiedar working overtime. 

Letters to an Autistic Teenage Girl. 1.

Dear Me,

Sixteen year old me, that is. Here are some letters from the future which might have been useful for me to have. Though of course, if I had, then I’d have been a different person and perhaps not writing them at all. But that’s enough time travel paradoxes.

I’m writing to let you know you’re autistic. Don’t worry. It’s just a catch-all term for the brain you already know is different and quirky. But it explains a few other things too. Things I wish I’d known earlier. I often think that between ages 15-23 or so is when a diagnosis would have been most useful to me. To you I mean. Though to be honest, you do already have a lot on your plate. You’re estranged from your family, living in a very damp, cold bedsit and doing your A-levels. You know you don’t fit in. It’s fair to say that you often feel totally alone in the world. You’re sort of alright with that, though maybe not as alright as you think you are.

You’re doing great in some ways. Excellent work on keeping school as the main source of structure in your life. Also on going to drama workshops (and on your English teacher for getting you enrolled). Yes, I know you’d have preferred to be in the group with the older teenagers, but it’s probably for the best that you’re in this one. It is frustrating when the drama facilitator has asked you all to write about being “Typical teenagers” and you know you’re anything but, but stick with it. There’s something here for you. In these spaces where you get to experiment with different ways of being and speaking. Where you become aware of an audience and how they respond to you. I know you also often feel uncomfortable when you do the physical exercises and have to have other people in your personal space. This is going to get better too.

I’m not going to overwhelm you with other advice all at once, this is a series. But just to say that, you know when you do that exercise in drama where you have to close your eyes and lean back and trust that your partner will catch you? Your body can’t relax enough to do this yet, but stick with it. Keep trying. This is also symbolic. You don’t trust anybody yet. You’ve never been able to close your eyes and lean back on your parents or anybody. Your body hasn’t learned how to let go. I want you to know that you CAN trust some people. I can hear your questions; who, how, how do you KNOW? Weirdly, once you start to trust yourself, you can begin to learn who else to trust. But you’ve got to start getting to know yourself more first.

That churning feeling in your stomach? That’s usually a warning signal. The way that the things someone is telling you just don’t add up? That’s because they don’t. Stop persisting with making sense of their lack of sense. The feeling that you have that somebody doesn’t really see YOU, your real self is invisible to them? It’s because they’re not listening to your wants and needs. This might be because you’re not great at expressing these yet (Just be direct- you’re allowed wants and needs). But it also might be because they’re not really listening to you at all.

Once you know how to trust (some) people, you can ask them for help with the things that you’re not so good at. You struggle with some of these things not through lack of effort, but because they’re not your thing- it’s not cheating to ask for help and support. For example with: paperwork, organising homework and bills, prioritising tasks generally, how to approach people in the type of creative work you want to do, reading body language and non-verbal signals (this is a big one- there’ll be whole letters on that), how to budget, how to plan meals and cook. I know you find practical stuff boring, but you’ll have more brain left for the exciting stuff if you’re not struggling with these sort of things.

I’ll leave it there for now, as this is plenty to think about, though just to add:

Keep listening to Leonard Cohen. Glad you’ve discovered him. This thing called Spotify’s going to be huge and you’ll be able to get all the rest of his stuff for free one day.

I know your weekend food routine of a Chinese on Saturday night, Galaxy bar and pint of orange juice for Sunday breakfast, then Fish and Chips for Sunday tea is working for you but how about you throw a banana into the mix? Your bones and synapses and things will thank you for it one day.

Princess Diana is NOT a good model for your emotional life. We’ll discuss this in further letters…

All the best


Ten Good Things about #Aspergers and Me and Ten Niggly Things

Review of this BBC documentary about the wildlife presenter Chris Packham:

The Good Stuff

  1. Chris Packham used his great TV presenting chops to make this an autism-led show. He was engaging, thoughtful, articulate and funny. He showed those who doubt, that autistic people can be these things and was allowed to take centre stage as an authority on his own experience and not a victim.
  2. He highlighted the sensory issues of autism when he described the “Hyper-reality” of seeing trees, and pointed out how distracting the school and office environments he visited were.
  3. He provided a rare, mainstream criticism of ABA and put up a good case for it being counter-productive and cruel.
  4. But he sensitively acknowledged how some parents of autistic children are desperate for a cure and can be exploited.
  5. The show was beautifully shot and put together, and the reconstructions of his past were done really well. (Also yay- Penetration’s “Shout Above the Noise”- one of my own personal anthems too!)
  6. His relationships with his kestrel, dogs, girlfriend, sister, stepdaughter and other animals were shown as deep, loving and complex.
  7. He was realistic about how although he’s currently in a good place “It’s all built on sand” and he wasn’t sure how he’d cope with another loss. (Arguably the human condition is that everything we have is built on sand though).
  8. There was a strong sense of how he had built his own coping strategies and implemented them – although also a sense of how restrictive these could be.
  9. He acknowledged that these experiences were his and that those of other autistic people were different- and that he had been lucky in many ways.
  10. The chronological timeline of the show demonstrated what is often missed- that autism is a DEVELOPMENTAL condition and thus someone will change over the course of their life. He often talked about the downsides of “Going off on one” but it was clear that in his TV presenting environment, his colleagues accepted and appreciated his quirks, as well as his great knowledge and expertise.


Ten Niggly Things 

  1. Women are chronically under diagnosed. This is a huge issue. But literally the only women speaking in this documentary were Chris’ sister, girlfriend and stepdaughter.
  2. He seemed to accept descriptions of him as lacking empathy and compassion but I saw HUGE empathy and compassion for animals- and also for humans, even if not always expressed in conventional ways.
  3. Would a woman get to say “I’m not going to your graduation, no way” to her stepdaughter and have everyone laugh ruefully? Nope. This is why acknowledging that the social context for men is different is important.
  4. Loved seeing Chris’ tidy, colour coded wardrobe. But many autistic people have executive function issues which mean they find it hard to keep things tidy. Strongly suspect he has a cleaner- nothing wrong with this, but would have been nice to know a bit more about some of those day to day organisational challenges.
  5. His strategy to avoid the baffling rejections and confusions of his teenage years and of socialising is to live alone in a forest. I understand this as one possible strategy but it’s really NOT the only one, and is not available to everyone. Another downside of focusing on one person’s story at once.
  6. Are autistic people never allowed to be friends with other autistic people on telly? I’ve only ever met autistic people in social contexts so perhaps I have a skewed view, but still. It reinforces the idea of autistic people as unable to form communities.
  7. The producers still framed the show around the “Let’s look at the new scientific developments/cure” angle. Although this was brilliantly challenged, it would be great to have it fully challenged by highlighting how little research cash is spent on helping autistic people live more fully and happily.
  8. At a time when funding for diagnosis and support for children is being cut and support for adults is still woeful, it would have been good to have a bit of a political angle. Still, I think there should be more of a political angle to everything. Use of “functioning” labels also not ideal. 
  9. The word “Neurodiversity” would have been nice to hear- though I think the spirit of it pervaded the whole show wonderfully.
  10. It reproduced some of the most pervasive tropes of autism-cliché- awkward, solitary, sciencey man uses special gifts to justify existence and triumph. At the same time it was also a nuanced enough show to undercut all the tropes too- yay!

Social trough 

As if to chastise me for crowing about my current joy at socialising and surprisingly good social skills, I have spectacularly failed at social all day. So in the interests of balance I will share some of that too. Maybe better here than in edited middle of the night “Oh no, then I said that!” highlights. 

Today I was helping organise a conference. Let us skip over the bureaucratic hell and the long emails & the executive function nightmares in the lead up. I was looking forward to the day itself. Creative people interested in what I’m interested in. Oh dear. I’d forgotten how the feeling of responsibility caused by being one of the hosts would make me run on about 30% social battery.

So when the break time drinks were not available & I failed to get much help out of the venue receptionist I didn’t have enough battery to hide my irritation or bafflement. Cue my colleague saying later in disbelief “The receptionist said you were angry…that wasn’t you was it? I said to her ‘She’s not an angry person’ “”. 

Then there were the people looking at me with something between concern and bafflement when I failed to concentrate on the conversations they tried to engage me in. The woman to whom I said roughly  “I’ll look some other time” when she tried to show me her photos. The woman who reminded me she’d been heavily pregnant last time we met when I expressed surprise she had a son. The people I perserverated to about there not being enough water available. I was aware of giving off a manic, disconnected energy apart from in the rare moments where I could manage to focus or someone somehow allowed me to just “be” with them. (Hardly anyone).

Spiky profile. On the positive side, I spoke well, confidently, warmly and amusingly when introducing things (except towards the end when stuttering over my words). I also managed not to be openly annoyed with the woman who talked, when I disclosed my diagnosis to her later, about performers with depression and social anxiety talking about it on stage. She said it would be no problem. I said “The thing with autism though is, people think you lack empathy, humanity and humour”. “Ah” she said “But that depends where you sit on the spectrum doesn’t it?”

Well no, it really doesn’t. It depends on how tired you are, your social context, your moment to moment confidence levels, all sorts. As today has proved. 

Peak Social 

I meet a lot of people with social anxiety. Performers mostly. That sounds counter-intuitive, but there’s something about speaking or singing your words alone on a stage, audience in dim light in front of you, that is both a compulsion and a salve for the socially anxious. They’ll talk about it openly after the gig, or during. The times they couldn’t board a train or talk to someone or be seen without shaking. The fear of what could happen. 

I listen with sympathy and interest then feel like a fraud. I was diagnosed autistic three months ago. Shouldn’t I (statistically & according to my diagnosis) be struggling in social situations? Shouldn’t I be running through worse case scenarios in my head? At the moment talking to new people energises and excites me. I get into banter with the woman checking me in, stay up late with the other writers, get into intense conversation over breakfast with a singer I hardly know. 

The thing is, I’m somehow in the best social condition of my life. I mainly socialise at academic conferences or gigs I’ve done. This means I’m talking to people about my special interests. About things we’re all enthusiastic about. I’m a performer and writer so people don’t expect me to be conventional. I have built- in social leeway. I’m mainly among tolerant and open people. There are some other factors I think might also be contributing to this peak social time for me: usually the talk’s in quiet bars or conference rooms. I’m 42. An age where fewer weird sexual undercurrents I can’t read are swirling. I’m married anyway. Many of the people I talk to are partnered up. I have some status in the gatherings I’m at. My work’s known a bit by the people there. I don’t have to justify my existence. At the same time I’m not very high status (at all). People feel okay to approach me. “You must meet a lot of people” they say. Not quite being offended when I fail to recognise them. 

This is all so different to social situations when I was younger. The loud bars, the banging music, the confusing emotional undercurrents when people copped off with each other or tried to do so with me. The gatherings without clear purpose or structure or ending or beginning. People drinking a lot and changing in front of your eyes. Talking about things in ways very different to how I thought about things: getting a boyfriend, reading magazines, getting a house. “You’re so intense” they’d say, “You think too much” and I’d look on, like I’d been beamed down from another planet. I don’t think I’d have described myself as socially anxious, even then, but I was certainly often bored, confused, frustrated by socialising. 

I know I’m lucky at the moment. Work I like to do has led to socialising I like to do. It also seems to have become even more enjoyable since my diagnosis because I’ve not got a little voice telling me how I “should” be socialising. If I’m tired or bored, I’ll leave. I even asked one group I  (mostly strangers) “will you be having interesting conversations?” before joining them. I think any judgments they might make about me say more about them than me. 

Don’t get me wrong, I still have cringey conversations where my brain won’t work, there are awkward pauses & I almost want to blurt out “Sorry, my autism’s showing!”.  But overall I’m more me, and finding people who are also “more me”. I’ve even got to grips with the idea that socialising doesn’t have to have a purpose exactly. It can be playful, letting off steam, lightly connective without leading to lifelong bonds. In short, fun. Who knew?