The puzzle piece problem

CW: Autism Speaks, ableism, ABA and other “treatments”.

The puzzle piece is arguably the most recognised symbol associated with autism, and has been around for decades. It is also a highly controversial topic in the autism community*, and is becoming increasingly unpopular with autistic people. I touched upon it here a few weeks ago. It has been promoted by many neurotypical-led autism organisations that have shared various questionable interpretations of it, namely:

  • Autistic people suffer from a “puzzling” condition (we don’t; we suffer from ableism and lack of support)
  • Finding a treatment/cure is a puzzle that needs to be solved
  • The pieces of an autistic person’s brain do not fit

Sometimes the puzzle piece will be blue, based on the misconception that autism is a boys’ condition. This is largely associated with Autism Speaks, the leading autism organisation in America – more on that in a bit. Sometimes a symbol will show several brightly coloured puzzle pieces, with the bright colours representing “hope” – for cures and eradication, not support and understanding. Sometimes it will show several interlocked puzzle pieces with one askew or missing altogether. Sometimes the puzzle piece will be on the same ribbon symbol that is used for raising awareness of cancer and other illnesses. 

There are still plenty of people – mainly neurotypical, but also autistic – who like the puzzle piece and try to interpret it positively. They might argue that it represents how connected the autism community* is, or how puzzling life can be as an autistic person. Some go as far as to complain about how easily offended its naysayers are. Neurotypicals: please don’t speak over us on issues like this!

Now if its aesthetic appeal or personal interpretation were the only issues at stake, I might be more neutral on it. The issue for me is the ableist history it represents. As I mentioned previously, it is used as a logo for many harmful organisations, namely Autism Speaks. Autism Speaks is widely loathed by the autistic community* for many reasons. Firstly, it is notorious for demonising autism and using scare tactics and pathologising language when describing it to parents. Second, only a small percentage of its funds goes towards supporting autistic people. Third, it has only included one autistic person on its team, and that person left because they were not comfortable with its ethics. Fourth, it has promoted harmful cures, such as bleach and Applied Behavioural Analysis (ABA).

To clarify, ABA is a behavioural therapy that aims to eradicate autistic traits in children by rewarding compliance and neurotypical behaviour and punishing resistance and autistic behaviour. Punishments can include anything from withdrawal of attention, food or toys to electric shocks, squirting hot sauce in the eyes and general physical abuse. Needless to say, many people who went through it as children have developed PTSD and other mental illnesses.

I hope it goes without saying that I think we shouldn’t be promoting a symbol that is associated with abuse and discrimination. For a better alternative, there is the neurodiversity infinity symbol – gold for autism, rainbow for neurodiversity as a whole. The concept of neurodiversity is that there are many different brains that are all a part of natural human diversity, and all are equally valid. There is also the gold “Au” symbol, which is shorthand for autism, as well as the symbol for Gold in the periodic table. Either way, we are not missing a piece, nor do we need to be fixed. Save the “cure” mindset for conditions that actually cause suffering, and focus on dismantling systemic ableism instead.

 

 

 

*Autism community = anyone with a connection to autism. Autistic community = autistic people.

Note that this post was partly inspired by an article on intheloopaboutneurodiversity.com, which can be found here.

All images are from Canva.com.

To understand more about autism from the inside, please buy my book: Approaching Autistic Adulthood: The Road Less Travelled. You can find it on Amazon or any UK bookshops such as WH Smiths or Waterstones. Don’t forget to leave a review on Amazon to boost the book’s online visibility. Meanwhile, to find out more about me and my work, please visit my website: Artistic Autistic Grace.

Autism “Awareness” Month – what you really need to be “aware” of

For those of you who don’t know, April is officially Autism Awareness Month. You may have seen pictures on social media of buildings “lighting it up blue” for Autism Awareness. Or #autismawareness as a trending hashtag. Or well-meaning but patronising poems about autistic children. Or inspirational stories about an autistic person and the struggles they face, or what a neurotypical person has learned from them. Very often, April just sees the same old pathologising language, inspiration porn, stereotypes and ableist agenda spreading with renewed intensity. Then it passes, and nothing actually changes.

When you put it like that, it may come as no surprise that Autism Awareness Month can actually be a very uncomfortable time for autistic people. So I thought I’d write a quick post about what neurotypicals really need to be aware of in April – and it’s not autism.

For a start, please don’t support ableist organisations or resources. Some examples would be Autism Speaks (responsible for the “Light It Up Blue” movement), Turn Autism Around, Autism Hope Alliance, The Autism Community in Action and American Autism Association. To the untrained eye, I understand it might not be easy to distinguish between the reputable and less reputable ones. So if in any doubt, please consider the following:

  • Do they focus on causes and treatments, or support and acceptance?
  • Are they run purely by and for neurotypical people, or do they include and promote autistic voices? Neurotypical-led media only give an outside perspective on autism at best, and at worst, increase autism stigma.
  • Do they use pathologising, ableist language that makes autism sound like a tragedy or an illness, or do they use neurodiversity-affirming language (that is, promoting the idea that there are many different types of brain and that they are all equally valid)?
  • Do they use the puzzle piece symbol or the neurodiversity infinity symbol? The puzzle piece symbol is used by Autism Speaks, which is notorious for promoting harmful treatments, using only a small percentage of its money for helping autistic people and not including or supporting autistic voices.
  • Do they use exclusively person-first language (as preferred by many neurotypical “experts”) or do they use identity-first language (as preferred by many autistic people)?
  • Do they promote Applied Behavioural Analysis? ABA is a common behavioural therapy for autistic children, especially in the US, that aims to train autistic children to act more neurotypical by punishing resistance and autistic behaviour and rewarding compliance and masking. Autistic kids are put through this for 20-40 hours a week – the equivalent of a part-time to full-time job – and become susceptible to abuse, depression, anxiety and PTSD later in life.

With that in mind, be careful about raising money for any autism-related cause. Don’t do it for treatments, ABA, cures or scientific research. Do it for understanding, acceptance, better support and promoting autistic voices. Don’t pity “those affected by autism”. I am not “affected by autism”. I am an autistic person who is affected by neurotypical ignorance and lack of accommodation.

Take the time to learn from autistic people and to amplify what we are saying. Learn about autistic experiences – from younger and older autistic people, those with low and high support needs, those who speak, those who communicate in any other way, those of different races and cultures and those of all gender identities and sexualities. There are plenty of autistic advocates, groups and resources out there. I will include some links below.

Finally, don’t support the autistic community just to look or feel good. Do it because we need more understanding and accommodation. There are too many neurotypicals out there who won’t listen because some of us are deemed too “high functioning” to really count as autistic, while others are deemed too “low functioning” to be taken seriously. We have enough “awareness”. Let’s make April “Autism Acceptance Month”.

 

https://artistic-autistic.co.uk/ (my website)

https://www.amazon.co.uk/Approaching-Autistic-Adulthood-Road-Travelled/dp/1784529575/ref=cm_cr_arp_d_pl_foot_top?ie=UTF8 (my book)

https://neuroclastic.com/

https://neurodivergentrebel.com/

https://chrisbonnello.com/

https://autisticinclusivemeets.org/

https://ellemcnicoll.com/

https://mysilentvoice.blog/category/autism/

https://queerlyautistic.com/

https://autismandrace.com/

http://www.thinkingautismguide.com/

https://awnnetwork.org/

The medical vs social model of disability

The use of the words “disability” and “disabled”, and if and when they are appropriate, is still widely debated. Many typically-abled people see them as dirty words and a taboo subject. They prefer phrases like “differently abled” instead. Meanwhile, many people with disabilities see this as rather patronising, and are trying to reclaim the word “disabled” in order to shake off the stigma. They feel there is no shame in accepting their disability as part of their identity, and to shy away from it is to shy away from the realities they face.

For a long time, I was unsure of where I stood, as an autistic person with low support needs. I can manage basic adult life skills and have made it through mainstream education and work. Autism counts as a disability, yet for me, at least, many of my struggles have come from me simply being different to my peers and them not understanding my differences.

Then I learned about the medical model and social model of disability. The medical model of disability portrays a disabled person as being disabled by their physical or neurological differences. These differences are seen as defects that need to be treated or removed in order for the person to be accepted, or have a good quality of life. If the disability is a neurological one, the person is praised when they are able to suppress their natural traits and needs and appear neurotypical. When disabled people are seen through the medical model lens, they are often pitied and patronised.

The social model, on the other hand, portrays a disabled person as being disabled by a lack of understanding and accommodation by society. Their differences are only disabling when they are in the wrong environment. In order for the person to have a good quality of life, they need the right physical and social accommodations. When disabilities are viewed through the social model lens, they are seen as yet another natural variant in human diversity.

This sums up my experience. I am only disabled when in the wrong place or with the wrong people. When people explain things to me in a clear, step-by-step manner, I am not disabled. Nor when people understand that I listen better without eye contact. Nor when I don’t have to be in a busy, noisy place, or in a situation that requires physical co-ordination. Nor when I am interacting with fellow autistic people, or neurotypicals who understand me. Nor when I am allowed time to myself after sensory or social overload.

But according to the medical model, my natural abilities and traits are nothing more that a set of “symptoms” and “deficits” that need to be removed*. My natural tenacity – and any resistance I show when pressured to act more neurotypical – are seen as inflexibility. When I was a child, my unusual interests and ways of playing would have been seen as inappropriate. My tendency to say what I mean with no hidden expectations is seen as an inability to deal with other people not doing so. I am depicted as having poor social skills just because my social skills are different to neurotypicals’.

Basically, I am “differently abled”, and in a neurotypical world, that can be very disabling. To conclude, I thought I would paraphrase a quote** that I came across on Facebook recently: People think of autism as being a tear in the fabric that makes autistic people who we are. What they don’t understand is that autism is the fabric.

 

 

*I realise some autistic people with high support needs have co-occurring conditions that many people think should be treated. For my thoughts on that, please go here.

**unfortunately I can’t find the source.

 

To understand more about the autistic experience from the inside, please buy my book: Approaching Autistic Adulthood: The Road Less Travelled. Don’t forget to leave an Amazon review to boost the book’s online visibility!

My website: https://artistic-autistic.co.uk/

“High/low functioning” labels, and why they don’t work

If you are well familiar with autism, you may have heard the phrase: “If you’ve met one autistic person, you’ve met one autistic person”. In other words, no two autistic people are completely alike. While most of us do share certain traits that we are less likely to share with neurotypicals, the above phrase is accurate overall. We all have different interests and abilities. We all have different sensory needs and struggles. We don’t all communicate in the same way. Some of us speak, some sign, some use technology and some use any combination. Some of us are very expressive, others struggle to externalise our emotions. Overall, we’re a pretty diverse bunch.

You may have also heard the phrases “high functioning” and “low functioning”. These labels were coined to summarise how an autistic person comes across. People often say “high functioning” to mean “able to speak, live independently and mask as neurotypical”, and “low functioning” to mean “non-speaking and needing full time support due to co-occurring disabilities.” But more and more autistic people are turning away from “functioning” labels. Why? I’ll explore the main reasons below.

I’ll start with an uncomfortable truth: these labels were originally used to convey how useful any autistic person is to neurotypicals. “High functioning” people are seen as similar to neurotypicals and therefore useful to society. “Low functioning” people, on the other hand, are deemed too different to neurotypicals to be of any use at all.

On a similar note, people labelled “high functioning” often have their struggles dismissed. People only see them managing life skills and acting neurotypical, without seeing the very real sensory overload, masking, communication mismatch, burnout and so on. They are seen as too “weird” or “stupid” to be fully accepted, but not disabled enough to be accommodated. And people labelled “low functioning”, often have their abilities dismissed. People see how different they are to neurotypicals, or how much support they need, and assume they have no potential. Instead, they are seen as eternal children.

Also, being autistic isn’t as black and white as the “functioning” labels imply. Someone might be non-speaking and very talented in some areas, or fully speaking yet unable to live independently, or intelligent and sociable but prone to bad meltdowns. And most autistic people find that how well they function varies depending on their situation, or even their stage of life.

What are the alternatives? One is to say “low/high support needs”, which summarises how much support a person needs, rather than how they are perceived by society. While these labels may still seem black and white, there is no reason why the person has to use the same one at all times. Another alternative is to simply describe each individual’s needs and abilities as they are, without categorising them at all. That way, you are painting an accurate picture of that person while reducing the leeway for assumptions.

Which alternative do you think works best? Please share your thoughts in the comments!

 

To understand more about the autistic experience from the inside, please buy my book: Approaching Autistic Adulthood: The Road Less Travelled. Don’t forget to leave an Amazon review to boost the book’s online visibility!

My website: https://artistic-autistic.co.uk/

Letting down my hair

Here’s another short story. This one summarises how I and many autistic people often feel at social gatherings. Note that the people in this story are entirely fictional.

“Your hair’s coming loose already, let me just fix it,”

I stiffen as my friend Georgia reaches over and adjusts one of the grips in my hair. I try not to grimace too visibly at the sensation.

“Thanks,” I reply, conscious of the grip pinching tighter at my hair, now unnaturally straight and smooth. “This is why I don’t really do much with it. It’s kind of hard to hold it down for long before it goes wavy.”

“You should really do more with it,” she says. “It looks so good straightened and styled. You want to look your best at a party.”

We have just spent the past couple of hours at Georgia’s house. She was desperate to do my hair and makeup, and because this is a special occasion, I agreed. I gritted my teeth through the sensation of the straighteners slowly pulling my hair. I tried not to flinch when she did my makeup. I was going to have to look my best and like it.

Now I look around me at all the people in the room, mingling in small groups. I can hear snippets of conversation from all angles. The music in the background is pulsating in my head. The zip on my dress feels scratchy and my shoes are rubbing. There is so much to see and hear and feel all at once, too much to filter out so I can just focus…

“You ok?” One of the other guests is looking at me.”

“Sorry, yeah,” I reply, remembering just in time to make eye contact. “Just got distracted.”

Next to me, Georgia is shaking her head at me slightly, chuckling.

“Sorry,” I say to her quietly. “I did say I’ve never really been much of a party person.”

“Of course you are!” she says brightly. “You just need to be more confident. Talk to people a bit more, make more effort with your appearance, that sort of thing.”

I make a non-committal noise. I don’t tell her that talking to people isn’t as simple as it sounds. That all the confidence in the world won’t help me navigate unspoken social expectations, like when to talk and what to say. That looking my best does nothing for me except pull at my scalp all evening, make my face feel sticky or rub at my skin for hours.

Instead, I strike up a conversation with one of the girls opposite me. I force myself to make eye contact, watch for social cues and focus on saying the right things. Nice top! Where did you get it? Ah cool. Do you enjoy shopping? Then Georgia chimes in about where we went for our latest shopping trip. I try to stay in the loop, but now my hair grips are rubbing uncomfortably behind my ears. A sudden chorus of laughter erupts from a cluster of people near by and I jump out of my skin. The noise is getting unbearable. I turn back to Georgia and the others, but they are chatting away now, barely looking at me.

I get up and slip off towards the bathroom. I look at myself in the mirror. My hair is trying to curl, pushing the grips out of place. I don’t have the know-how to fix it, nor the energy to sit through someone fiddling with it again. I get my phone out of my handbag and scroll until I find the Uber app. Select time, select pick-up spot…

***

Home at last, I kick off my shoes and head upstairs to my room, glad I can walk without further chafing my ankles. The silence feels like a shock to my system, but with my mind still buzzing with sensory overload, I embrace it. Once in my room, I take off my dress and tights, and pull on some tracksuit trousers, fluffy socks and my favourite nightshirt, relishing the contrast. The trousers and socks feel soft and not too clingy. The shirt smells warm and comforting. I reach for a makeup wipe and rub away at my face until it feels nothing but clean and fresh.

Finally, I free my hair from the hair grips and let it fall back into place. I carefully undo the little plait at the side. I gently run a brush through it until it is back to its own comfortable shape. Then I lie down on my bed, feeling comforted by the softness. Now I can let my hair down. Now I can just…be.

The swan

Here is another prose piece, my personal spin on The Ugly Duckling by Hans Christian Andersen. I got the idea when I briefly mentioned that story here. This piece is for anyone who has ever struggled with being different and finding their place.

The sun slowly rises above the hills. Nestled safely beneath the willow tree, you blink several times, adjusting to the light. You rise to your feet and stretch out your wings, giving them a quick shake. You look ahead of you to see that the lake is no longer frozen. As you wade through the reeds, you glance around carefully, feeling that familiar sense of foreboding. Who might be waiting unseen, ready to drive you out? Not a creature in sight so far. For the moment, you are safe.

But then you hear the sound of beating wings approaching from far across the sky, one of many sounds you have learned to dread. You look up to see a group of huge white birds with long necks descending towards you. It is too late to hide. They have seen you, and you know that they are not going to like what they see. Maybe they will ask questions. Why are you so strange? Why aren’t you like other ducks? Maybe they will laugh, beat you, chase you away. You lower your head and turn back towards the willow, bracing yourself for the inevitable.

“Why are you trying to hide?”

You feel a gentle touch on your wing, and you tentatively look over your shoulder to see one of the great white birds leaning towards you, head slightly cocked. They are surrounding you, standing tall and graceful, their white feathers glossy in the sunlight. Now you feel smaller than ever, and your voice shakes a little as you reply:

“Because you might hurt me, or drive me away.”

“Why would we drive away one of us?” ask the bird who has spoken.

“I’m sorry,” you say. “but I can’t be one of you. I am too ugly.”

The birds look at each other. Surely now they have realised their mistake? But then the leading bird speaks again.

“Look into the water”

With the white birds at your side, you reluctantly walk back towards the lake. Memories flash through your mind of the other ducks laughing at your too-grey feathers, your too-big head, your too-loud voice, until you learned to stay quiet and avoid your reflection. Then you look.

In the water, you see the tall white birds with their slender curved necks. They are elegant and majestic, and their wings are strong and powerful. And the one in the centre is you.

For a few moments you are completely stunned. When you find your voice again, you manage to say, “I never thought a duck like me could turn out like this”.

“A duck?” says another bird. “You are no duck, nor are you ugly. You are a swan, like us, and you are truly beautiful. You really are one of us.” The others echo their agreement, and for the first time you can remember, you begin to feel hopeful.

“We came to ask whether you would like to join our group,” says the first swan. “You won’t have to be alone, and we will do everything we can to help you belong”.

In a daze, you accept, and you follow the swans as they glide across the lake. You are happier than you have ever been, and yet your joy is tainted by grief for all the seasons lost to humiliation and self loathing and never knowing anything else. Underneath your new-found beauty, you are still the same little ugly duckling, and you wonder if you will ever be free of that feeling.

Then the swans beat their wings and rise into the air, and you join them, relishing the wind ruffling your feathers. Has flying always felt so wonderful? You think about the ducks and all the other farm animals, and you can’t help wishing they could see you now. You wish they could understand the constant fear and shame they instilled in you while you were growing up. You have to accept that they probably never will.

But then you put on a burst of speed so that you are at the centre of the group. And as you gaze at the greenery flashing by below, you wonder: would being among your true family feel so good if you had never known the opposite?

Am I autistic or do I have autism? Part 3: the problem with the person-first mindset

The debate over using identity-first or person-first language has become an increasingly common topic in the autism community. Identity-first language (IFL) is “autistic person”, while person-first language (PFL) is “person with autism”. I have already written about this twice. But yesterday, I stumbled across a Facebook post talking about what children with autism want the world to know. One of those points was that they are children first, they have autism. Adults can choose to identify however they like, but children shouldn’t be defined by one characteristic.

I realise that this sentiment is well-intentioned. But what people don’t realise is just how problematic the person-first mindset can be. As someone who used to be one of the children the author of that post is trying to speak for, let me explore this (again).

But first, I should probably make a few things clear:

  1. I’m talking specifically about autism, not disabilities as a whole. IFL may not be the right approach for some conditions.
  2. If someone occasionally uses PFL in conversation, that is fine by me. It’s neurotypical resources insisting on using it despite many autistic people saying otherwise that bothers me.
  3. If another autistic person prefers PFL, I will respect their opinion.

There are several reasons why many autistic people are turning away from PFL. We shouldn’t have to remind the world that we are people first. Similarly, we are not “affected by autism” (a phrase that makes me want to gag). We are autistic people who are affected by neurotypicals and their idiosyncrasies. There is no neurotypical person hiding behind the autism. We cannot be separated from our own neurology like an illness or physical condition; it is how we are wired.

Also, the impact of the person-first approach can be significant but not always obvious. When I was growing up, PFL wasn’t as widely talked about as it is now, but the general attitude was still there. As far as people were concerned, I was an otherwise “normal” child with “symptoms” and “deficits”. These were regularly discussed at school, not least because it was the only way to prove that I needed support. To get by socially and academically, I had to learn to mask, and began to see overcoming my natural traits as a desirable goal. Then when I couldn’t, I struggled with frustration, anxiety and self-loathing.

It took me a long time to realise that I was ok as I was and accept my autistic identity despite the ongoing autism stigma. I gradually moved past the mindset that autism was something that could and should be separated from me. Although I still have my struggles, I have definitely been happier and more secure in myself since.

I should add that I do, at least, have a kind and supportive family who have always accepted me. I realise not everyone is so lucky.

To conclude, I though I’d reference the metaphor in Hans Christian Andersen’s* story of The Ugly Duckling. I am not a duck with characteristics deemed undesirable by duck standards. I am a metaphorical swan, something similar to a duck, yet also inherently different.

 

To learn more about what it truly means to stand strong as an autistic person in a neurotypical world, please buy my book, Approaching Autistic Adulthood: The Road Less TravelledYou can buy it on Amazon, order it via any UK bookshop (e.g. WH Smiths or Waterstones) in person or online, or via me personally. And please leave a review on Amazon. I’ve been advised to aim for 100<. Four so far, 96 to go!

 

 

*Incidentally, Hans Christian Andersen was thought to be autistic.

Church and vulnerability part 2

A while back, I wrote a blog post about church and vulnerability. I had recently listened to a talk about the importance of being vulnerable and open, and as a then-closeted lesbian, this had left me feeling conflicted. Now, having taken more time to reflect on – and open up about – my sexuality, I thought I’d explore this topic again with a bit more perspective.

Being open – or not – in a Christian environment has been a recurring theme in my life. For a start, it was at church that I started to make more friends. I felt more able to open up about being autistic and generally grew more socially confident. Before I knew it, I was attending regular church socials and even camping trips. People at church didn’t seem to hold me to the same standards as many of my peers did at the time, something that still holds true in my adult life. This is something that I will always be thankful for.

But it was around this time that I first heard people rant about “the gay lifestyle“, or talk about how we should be rejecting any “homosexual agenda”. Would they reject me, if they knew I was a lesbian? I got into the habit of fervently Googling whether or not being gay was a sin and despairing over how many people believed it was. Christians would keep talking about how important love and marriage were, but would also insist that same sex attracted people remain celibate. I kept suppressing any desires for romance or any feelings about my sexuality so that I would still be accepted. I had found it so hard to belong as an autistic person, I couldn’t bring myself to risk losing my new found friendship group.

Fast forward a few years to my weekly intern discipleship course. Everyone was friendly, and when travelling to and from our mission trip, I got the support I needed. Overall, I had some good times with the people I met, and by the end of the year, I was proud of how well I had managed. In hindsight, however, I realise I was wearing my neurotypical mask as best I could, and when I couldn’t, I stood out like a sore thumb. I had a shutdown at the beginning of the course. I struggled with team games and other group activities. When I needed time alone at lunch, I was encouraged to go and socialise with the others. I didn’t try too hard to explain my needs because I lacked confidence and hadn’t yet unlearned the mindset of trying to be as neurotypical as possible.

On top of that, we were always being encouraged to keep opening up and going deeper with each other. Unfortunately, hearing a speaker talk about how we shouldn’t be welcoming or including LGBT people made this all the more daunting for me.

People at church encourage vulnerability, but the reality is we need to ensure that church is a safe space for opening up. Christian groups are, in many ways, groups of people like any other. And groups of people have biases. They don’t always accommodate different needs. They say hurtful or ignorant things without thinking that someone in their audience might be impacted by what they are saying. We can’t always eliminate these issues, but we don’t have to go along with them unquestioningly either.

 

Want to read more about finding your place as a person in a minority category (or three)? Please buy my book, Approaching Autistic Adulthood: The Road Less Travelled, available for purchase via Amazon or any UK bookshop or bookshop website. You can also buy one directly from me – just message me privately via any of my social media outlets. And don’t forget to leave a review on Amazon. The more reviews I get, the more my book will circulate online, so please keep them coming!

Q and A on Facebook Live

It is just over a week until the release of my book, Approaching Autistic Adulthood, and this Wednesday 6th October at 6pm UK time, I will be doing a livestream Q and A video. You can find it on my Facebook page, Unwritten Grace – autism and writing. Please fire away with your questions about the book, the writing process, my experiences as an autistic person or anything else you can think of. If you can’t be there, you can still ask me questions in advance either in the comments section here or via a private social media message (see my About section for social media details). I’m hoping to have plenty to talk about, so the more questions the merrier!

For some reason I am unable to access Facebook on my computer this afternoon, so to provide a link to the event, I have had to copy and paste from my Twitter post and hope for the best: https://t.co/hu0TQ98NeH?amp=1

Meanwhile, in case you missed it, here is the Amazon preview of my book. You may find it useful as a prompt for any questions: https://www.amazon.co.uk/Approaching-Autistic-Adulthood-Road-Travelled/dp/1784529575/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1633335304&sr=8-3

Autistic behaviour – interpretation vs meaning

Most autism resources perpetuate the notion that autistic people struggle to understand neurotypicals and therefore lack social skills. The reality is that while we struggle to understand neurotypicals and their social cues, they struggle to understand us and ours. But because NTs make up the majority, it is their ways of communicating that are seen as the default. All too often, this means that even the most well meaning people tend to interpret autistic behaviours through a neurotypical lens. Then, for good measure, they might blame any misunderstandings on autistic people having poor social skills.

With that in mind, I thought I’d write a list of autistic traits and behaviours that are commonly misunderstood and what they are likely to mean. I realise not every meaning I have listed will be completely accurate for everyone on the spectrum, but I hope this is an eye opener for neurotypicals who need to understand.

  1. Behaviour: Not making eye contactCommonly interpreted as: “I am not listening to/interested in what you are saying”. Actual meaning: If staring in a fixed direction: “I can concentrate more easily on what you are saying if I am not also concentrating on how to stare at your eyeballs in a way that you approve of”. If looking all around: “I can hear what you are saying, but I am having trouble filtering out everything else I can hear – and see – all around me”.
  2. Behaviour: Being uncomfortable with touchCommonly interpreted as: “I do not like you” or “I am upset with you”. Actual meaning: “I am very easily startled/overwhelmed by touch” or “I do not know you well enough to be on touching terms with you”.
  3. Behaviour: Needing time alone. Commonly interpreted as: “I do not want to spend time with you”. Actual meaning: “I am going through sensory/social/emotional overload right now and do not have the mental energy for socialising.”
  4. Behaviour: Struggling to keep up with group work. Commonly interpreted as: “I can’t be bothered to contribute”. Actual meaning: “There is too much noise and too much information being thrown around and I have no idea what I should be doing”.
  5. Behaviour: Having a meltdownCommonly interpreted as: “I am angry about not getting my own way” or “I want attention”. Actual meaning: “I am feeling completely overwhelmed by the situation I am in”.
  6. Behaviour: Having a shutdownCommonly interpreted as: “I do not want to engage/co-operate with you”. Actual meaning: “I am feeling completely overwhelmed by the situation I am in”.
  7. Behaviour: Talking over someone. Commonly interpreted as: “I am being rude and/or impatient”. Actual meaning: “I find it hard to judge when it is my turn to talk”.
  8. Behaviour: Struggling to reply when spoken to. Commonly interpreted as: “I am ignoring you” or “I can’t hear you”. Actual meaning: “I am overloaded/concentrating on what I am doing, and I do not have much mental capacity left for talking”.
  9. Behaviour: Stimming, e.g. fidgeting, rocking, pacing, hand flapping, playing with hair. Commonly interpreted as: “I am bored” or “I am weird”. Actual meaning: “I am nervous/excited/frustrated/overwhelmed, and I am trying to regulate my emotions.”
  10. Behaviour: Making eye contact, not reacting to uncomfortable sensory stimuli, not stimming, and generally appearing neurotypical. Commonly interpreted as: “I am doing well socially”. Actual meaning: “I am masking my natural traits in order to be socially acceptable to other people, and can only keep this up for so long before I burn out.”

None of this means that autistic people should never be corrected for anything. I can’t speak for everyone on the spectrum, but if I do or say something that is actually problematic, just tell me clearly and logically, and I will willingly take full responsibility. What I want people to take away is that a behaviour that means one thing from a neurotypical may mean something very different from an autistic person.

 

Want to understand autistic communication better? Please preorder a copy of my book, Approaching Autistic Adulthood: The Road Less Travelled, out on Wednesday 13th October. You can find it on Amazon as a paperback and ebook, and it will be available on most bookshop websites. Alternatively, I have a limited number of copies that you can buy directly from me. To find out more, please message my Facebook page: Unwritten Grace – autism and writing.