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 contact. Commonly 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 touch. Commonly 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 meltdown. Commonly 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 shutdown. Commonly 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.

Book release date and photos

As I mentioned a few weeks ago, I am now the proud author of an upcoming book, Approaching Autistic Adulthood: The Road Less Travelled. This week, two very exciting things happened. First, I was given an official release date: Wednesday 13th October. Second, I received my very first copy in the post! Once I officially approve it, I will be getting 100 more in a few weeks.

To recap: the book is an informal guide to life as a young autistic adult, with plenty of my own life anecdotes and some that were very kindly contributed by other autistic adults. Last time I talked about my book on here, I included an image of the cover design. This time, I can show you some photos of the book itself (I did all the drawings, while Panoma designed the cover):

The drawing I did for the beginning of Chapter 1 – Explaining Autism. The robot on the left represents the “unemotional genius” autism stereotype, while the person on the right is me in all my nerdy, emotionally sensitive, cat loving glory.

 

The drawing I did for the beginning of Chapter 2 – Overload. The picture basically depicts how it feels when I am too overwhelmed to maintain my neurotypical mask.

The book is not available for pre-order on Amazon yet, but I will let you know when it is. I will be sure to keep posting updates as and when I have them, and will be particularly active on social media in the lead up to the release date. Please keep sharing online and by word of mouth, not just to support me, but because there are so many things in my book that I wish more people understood. My social media details are as follows:

Facebook: Unwritten Grace – autism and writing

Instagram: unwrittengraceblogs

Twitter: unwrittengracel (that’s a lowercase L)

To conclude, I would like to say a big thanks to Panoma Press for producing this book so efficiently and for being so helpful and informative all the (many) times I have been unsure of anything. I would also like to thank the other autistic people who contributed their stories and advice. My book would not be the same without them. Now let’s start counting down the days until Wednesday 13th October!

 

Alexithymia – do autistic people lack emotions?

One of the most common – and harmful – stereotypes about autistic people is that we lack emotions. This is another example of neurotypicals speaking over us about our own experiences and interpreting our behaviour through a neurotypical lens. It fuels the ongoing alienation of autistic people by making us sound less capable – and deserving – of emotional intimacy. And it undermines the very real emotions we experience throughout our lives.

It is true, however, that we might not always know how to describe emotions or be consciously aware of how something has affected us. This is called alexithymia, something that I have only recently begun to understand. For a long time I didn’t think it applied to me, because I’m a deep feeler and very introspective. But upon learning what it really means, I have noticed that I do experience certain alexithymic tendencies.

For example, I often need time to let emotions sink in (both positive and negative ones). I might not always know why I am feeling a certain way if it isn’t a strong, immediate reaction to something significant. And sometimes I don’t know how to describe what I am feeling.

But I can see how that last line might not make sense. How can one not tell when one is feeling happy, or sad, or angry? Upon recent reflection, this is the best analogy I could come up with, complete with visuals:

I can identify and describe basic emotions such as happy, sad or angry as easily as I can describe colours 1, 2 or 3 as being red, blue or green, respectively. I can also differentiate between feeling mildly sad and feeling very sad in the same way that I can identify colour 4 as light blue and colour 5 as dark blue.

On the other hand, I might have more trouble describing the difference between two very similar emotions even though they feel different to me. For example, the frustration of not being able to do something because of an unforseen hitch, and the more deep-rooted frustration of not being able to make myself understood feel different to me. Yet I might express them in the same way. Similarly, if I was presented with colours 6 and 7, I would describe them both as black. I can see that they are different kinds of black, but if I don’t have the words to describe them in detail, how can I explain the difference?

Then there are feelings that are a mix of different emotions. Like the feeling I’ve had when under pressure to improve my performance at work. I can’t summarise it in one word because it a mix of frustration, anxiety, and self-loathing. That feeling fits all those words, yet none of them alone do it justice. Likewise, I would struggle to describe colour 8. It is sort of orange, sort of light brown, sort of yellow ochre and yet not fully any of them. As with the two blacks, I might struggle to name it, but that doesn’t mean I can’t see it.

I realise I could have just talked about those colours by name* without including a picture. I didn’t, because I wanted to simulate what it’s like to experience something fully and clearly without always being able to explain it. Being autistic might mean we don’t always communicate our feelings in a neurotypical way, but that doesn’t mean those feelings aren’t there.

 

 

*If you want to get technical, colour 6 is Mars Black, colour 7 is Midnight Black and colour 8 is Sandstone.

BOOK ANNOUNCEMENT – Approaching Autistic Adulthood: The Road Less Travelled

To coincide with my 200th blog post, I have some BIG NEWS to break! I can confirm that I have officially written a book: Approaching Autistic Adulthood: The Road Less Travelled. It will be published by Panoma Press, it is due to be released in October 2021 (exact date TBC), and it will be available on Amazon as a paperback and eBook. Alternatively, you can buy one directly from me, as I will receive 100 copies nearer the time. If you are interested, you can message me via Facebook (Unwritten Grace – autism and writing) or Instagram (unwrittengraceblogs). Please stay tuned for more information on other available outlets and for the exact release date.

The book is aimed at young autistic adults, and is an informal guide to dealing with topics such as: explaining autism, overload, friendship, dating, college and university, work, being out and about, and disrespectful behaviour. From autistic masking and burnout, to autism and intersectionality, to dealing with patronising and “neurotypical-splaining“, this book covers a range of issues commonly experienced by autistic people.

Throughout the book, I include my own life anecdotes to back up what I am saying and to give the audience something they can relate to. I like to think I’ve packed in a few laughs too! I also include quotes from several autistic friends and acquaintances of mine. They have been immensely helpful to me, and their contributions have enabled me to portray a variety of autistic experiences that my perspective alone would not be able to offer.

Because the way we talk about autism is changing all the time, I have set myself a few rules of thumb. One: I mainly use identity first language, but occasionally use person first language for the sake of autistic people who prefer it. Two: I use the word “Asperger’s” when describing my diagnosis or another situation where that word is specifically used, but say “autism” most of the time. A lot of people are dropping the term “Asperger’s Syndrome” due to Hans Asperger’s association with the Nazi regime, and I am careful to acknowledge this in the intro. Three: I try to avoid any words that make autism sound like a disease.

Finally, please spread the word either online or by word of mouth, and keep an eye on my blog and social media for more information. I am super excited to share with you this project that has taken over my life for the past 15 months. Any support of my book will mean a lot to me, and even more importantly, there are so many things in there that I wish more people understood. Panoma have been really helpful and efficient throughout the process, and I hope to be able to tell you more soon. Until then, here is a picture of the front cover (designed by Panoma):

Getting healed?! part 3 – help vs “help”

Ages ago, I wrote a couple of blog posts about the concept of getting healed for autism. I was strongly opposed to such an idea when a well-meaning person suggested it to me. Then I read about the perspective of parents of severely disabled autistic people who apparently would have a better life without autism, and suddenly I wasn’t so sure. I remained adamant that I don’t need fixing, but I couldn’t help worrying about promoting views that dismissed the suffering of people with higher support needs.

But after a lot of reflection, I realised that speaking up for the right to exist as an autistic person doesn’t have to be the same as denying support to anyone who needs it. When we speak against treatment, we aren’t saying that autistic people do not need help. The problem is that so often “help” is all about forcing someone to be more neurotypical, and less about easing suffering. And if, through finding a better quality of life, someone overcomes some of their autistic traits, then so be it. But the priority should always be their wellbeing, not their social image.

I understand there are some severely disabled autistic people who may have a better quality of life without some of their autistic traits. I understand why they, and their family and carers, may need a lot of support. But there is a fine line between help that equips someone to manage situations they struggle with, and “help” that forces them to be someone they’re not in order for people to accept them.

The sad thing is, there are still people who think it’s sad that autistic people work, play, and learn differently to neurotypicals, because the world is conditioned to see anything outside of neurotypical norms as lesser. There are still people who aren’t explicitly against autistic people, but complain when we struggle with eye contact, express ourselves in an autistic way, struggle with things that neurotypicals find easy, etc. There are still “interventions” and “treatments” (two words that I am always suspicious of) that ignore autistic needs and communication in favour of enforcing compliance and masking. And there are still too many resources that speak over autistic people instead of promoting what we are trying to say.

By speaking out against these issues, I am not trying to romanticise autism. Rather, I am trying to raise understanding and acceptance. I am not a sick, broken, or otherwise damaged neurotypical person. I am an autistic person trying to break free from years of masking my natural traits out of shame, and being encouraged to believe that being autistic is lesser. I write about these issues to help make the world a safer place for all autistic people because we deserve to be ourselves without shame.

Belonging and being myself

One of my unhealthy thought patterns is my ongoing “outsider” mindset. I’m sure I am not alone in this. I am quick to worry that friends will lose interest in me. When I find a community where I fit in, I end up hiding certain traits or parts of my identity for fear of losing my place. I can keep this up for quite some time, but in the long run, it only leads to further feelings of alienation.

I sometimes feel bad for saying this when I have a supportive family and great friends. But something I’ve been reflecting on lately is how I have always struggled to feel any sense of belonging as someone in multiple minority categories. It’s even harder when there is pressure to “be yourself” in order to connect with people who may react negatively to me doing so. I often wonder if this is a common struggle for anyone who is “different” in some way. So I thought I’d explore it here.

Being half Taiwanese means I have been different literally since birth. It was not uncommon for strangers in Taiwan to stare at me or even touch me when I was very little (to which I reacted by screaming in their faces!). Now, having lived in the UK since I was 4, I have often had to deal with assumptions or even rude comments about my race. From passing lads shouting “Great Wall of China!” to people asking if I speak English, it always rubs it in how people see me as a stereotype or a foreigner.

Then there’s autism and the stigma surrounding it. As an autistic person, I have always been surrounded by people who think differently to me and see their way as the norm. I am lucky to have family and friends who understand me pretty well. But even in recent years, I have had people take it personally when I don’t make enough eye contact, or when I don’t have the energy for socialising. At school, I spent most of my time either alone or burning out from trying to act more neurotypical. I saw being different as shameful, and I hated myself for it.

On top of all that, I was also trying to suppress my sexuality. I couldn’t face yet another thing that set me apart from other people. I had to sit through Christian talks and conversations about how gay people shouldn’t be accepted. I had to listen to people in my new friendship circle saying we should resist any “gay agenda”. I would hear discussions about the importance of “being vulnerable” in the same community where certain members were openly homophobic. While I was opening up more about autism, my sexuality remained taboo.

Mercifully, when I came out last month, I received nothing but overwhelming positivity. This is something that I will hold onto forever.

People often emphasise how important it is to be real. Unfortunately, when doing so could be met with hostility, it’s not always that simple. So I thought I’d conclude with a point made by a very wise friend the other year. To establish a sense of belonging in any community, should we focus less on pressuring each other to open up, and more on helping people feel safe enough to do so?

Double standards – neurotypicals and autistic people

After nearly a year of being in a pandemic, I have spent most weekdays and some weekends writing extensively about autism. This has had two effects. 1) Sapping my ability to continue doing so as if it is not getting stale for me. If my attempts at sounding conversational feel forced, please bear with me! 2) Forcing me to reflect on some uncomfortable realities about being outnumbered by neurotypicals. Namely, the double standards by which people are judged depending on how their brains work.

We’ve established that being in a minority is hard. When your communication style is different from the majority, it can feel like you have to push yourself twice as hard just to achieve the same things. When your experiences and struggles fall outside of the so-called norm, you have to fight to make yourself heard and hope that some people will listen.

There are constant misunderstandings between neurotypicals and the autistic community. I have heard it said that these things work both ways, which makes it even. I disagree. Misunderstandings do work both ways, but when one neurotype heavily outnumbers the other, and is therefore deemed “normal” and “right”, that does not make it even. Let me explain.

When neurotypicals don’t understand autistic people, it is because autistic people are complex and confusing. When autistic people misunderstand neurotypicals, it is because we are bad at understanding people.

When neurotypicals struggle to show empathy towards autistic people, it is because autistic people are unemotional and robotic. When autistic people struggle to show empathy in a neurotypical way, it is because we lack empathy altogether. NTs have spread so many stereotypes, described autism purely based on how autistic people come across, and shamed autistic people for not behaving in a neurotypical way. Those of us on the spectrum often feel our own and other’s emotions profoundly, and spend much of our time trying to learn how to connect with neurotypicals, yet we are the ones who apparently lack empathy.

When neurotypicals can’t read autistic body language, it is because autistic people are bad at displaying body language. When autistic people can’t read NT body language, it is because we are bad at reading body language.

When neurotypicals are unable to predict how autistic people will behave or react, it is because autistic people are unpredictable. When autistic people are unable to predict how NTs will behave or react, it is because we are bad at predicting people’s behaviour.

Many neurotypicals are only willing to bend so far to understand autistic people better, and are quick to alienate anyone who is different to them. Meanwhile, most of us on the spectrum have experienced constant pressure to adapt to and make sense of other people’s social expectations, yet we are the ones who are deemed bad at communicating.

I hope it goes without saying that these are criticisms about attitudes towards autism, not an attack on neurotypicals. I will always be grateful for people who listen and try to understand. Meanwhile, fellow autistic people, if there are any crucial points that I have missed, please let me know!

Nurture, not nature: the impact of being autistic in a neurotypical world

Through writing regularly about autism, I have noticed that there are many resources that describe inherent autistic traits. Many of these resources are by and for neurotypicals. Some of them are by autistic people explaining from the inside. What I haven’t seen so much of is something I have reflected on a lot lately: what traits might someone develop as a result of being outnumbered by non-autistic people? I can’t speak for everyone, but I can speak for me. Before I do, let me say: I am not making excuses for myself, because I know my flaws need to be kept in check. I am simply reflecting on how some of them came to be.

One of my main flaws is oversensitivity to criticism and judgement – real and perceived. If someone comments on, say, what a big portion of food I have at a meal, I immediately get self conscious. Am I greedy? Have I broken some implicit social rule? Similarly, if I behave in a noticeably “autistic” way and someone asks me why, I feel unreasonably frustrated. I know how important it is to understand each other’s differences, but sometimes it feels like I can’t just “be” without having to explain myself or face people’s judgement. 

I have realised that this is largely down to years of being monitored and corrected by teachers, and being teased and isolated by some of my peers. The latter in particular has led to another unhealthy tendency of mine: always feeling like an outsider. I resent feeling like an outsider in any situation, yet I am aware that that is my comfort zone because I know how to be that person. Once the excitement of making friends with an individual or a group has worn off, I am quick to assume they will get bored of me. If a friend grows close to another person, whether platonically or romantically, I sadly accept that they prefer that person now, when it might not even be true! I haven’t completely fought the “outsider” mindset yet, but I’m getting better at keeping it in perspective.

Then there’s my inability to trust my own judgement. What with all the mistakes I’ve actually made and the number of times I’ve been told “you’ll take longer to learn x” or “autistic people are always bad at y”, I expect to be wrong. At work, I was often told I needed to voice my opinions more and speak up about any changes I wanted to see. If I asked a question that was supposed to be obvious, it was sometimes met with annoyance. Very often, I had an idea of what the answer was, but was constantly worried that it had changed or that I had misunderstood.

Lastly, there is masking – that is, constantly trying to behave in a neurotypical way. It’s unavoidable, and in some situations, even necessary. I have often reached the point, however, where I have tried to mask my autism for so long, that I can’t keep it up. I have reached a better understanding now of when masking is and isn’t necessary. However I have been doing it out of shame for so long that I don’t know how to voluntarily unmask. I am not alone in this. Those of us on the spectrum put so much energy into being what people expect us to be, that we easily lose sight of who we really are.

‘Tis the lead up to Christmas

Recently there have been at least a couple of Christmas themed poems on Facebook about the trials and tribulations of living with an autistic person. Here’s my sort-of-heartfelt, sort-of-satirical, spoof about the trials and tribulations of living with neurotypicals. Yes, it’s even tackier than I intended. Enjoy!

 

‘Tis the lead up to Christmas, and all through the day,

Festive preparations are well on the way.

We’re all in the kitchen surrounded by mess.

There’s work to be done, no time to de-stress!

 

Cake decorating here, mince pies baking there

And us walking into each other everywhere.

Can’t judge where to step – wait, am I in the way?

Too much talking and mess jumbled up in the fray.

 

So I’ll step away from the chaos and cake.

With too much going on, I could do with a break.

I like Christmas, yes, but it can get too mad

With all of the prep and social calls to be had.

 

A crowded kitchen today, a video call last night

With the chat breaking up and the wrong level of light.

No clear turn to talk, no idea what to say

And having to put up with the sound delay.

 

For there are challenges that come with being autistic

In a neurotypical world where you’re always missing a trick

With odd social rules about conversation

That you have to learn out of pure obligation.

 

After a tough few weeks in a difficult year

Full of change and uncertainty, losses and fear,

We all need a holiday, and time to have fun

But a break from the NT world? Easier said than done!

 

Refusal to change, unclear communication,

Confusing demands that just lead to frustration,

And times when they leave me feeling stupid and small

And so burned out, I can’t function at all.

 

I’ve fretted and agonised, worried and moped,

Over all recent things that haven’t gone as I’d hoped,

And wished there were more people who understand

That I’m constantly trying as hard as I can!

 

But amid all the struggles, I like to remember

Everything to be thankful for this December.

So I’ll start with the obvious: my friends and family

Who know and support me and have always stuck by me.

 

For each neurotypical is different, I’d say,

And very unique “in their own special way”

Though some are illogical, strange and confusing,

Some are supportive, kind and amazing.

 

Now, as I rejoin all the family madness

With a much clearer head, I’ll do it with gladness.

At times I’ve felt lonely. At times I’ve felt stuck.

But with such a strong base, I know I’m in luck.

 

So Merry Christmas to all, and to all one last thing,

Whether you’re doing well or simply surviving,

Amid all the chaos at this crazy time,

With all the right people, you’ll pull through just fine.