Autism ableist language alternatives

Recently, I came across an online article about avoiding ableist language when talking about autism, which I thought I would write my own take on. One thing I liked about it was that it offered alternative things to say, as well as simply listing phrases and implications to avoid. I’m aware this post could make me look like another millennial “snowflake” who gets offended by everything. But I don’t have a fit whenever anyone says something careless. If it’s minor, I’ll ignore it. If it’s major, or if they ask, I’ll politely explain. Besides, pushing through low self worth due to my autism has taught me the importance of helping people understand.

1. Ableist language: “families affected by autism”. Implication: autism is a disease and people on the spectrum are a burden on their families. Alternative: “autistic people and their families”
2. Ableist language: “symptoms”. Implication: autism is a disease. Alternative: “signs”, “traits”, “features”, “characteristics”
3. Ableist language: insisting on using person first language. Implication: neurotypicals dictating how autistic people should talk about themselves. Alternative: if in doubt use identity first language, use both without insisting on either, or just say “people on the autistic spectrum”. Most importantly ask about, and respect, an individual’s preferences
4. Ableist language: “healthy vs autistic”. Implication: again, makes autism sound like a disease. Alternative: “neurotypical vs autistic”
5. Ableist language: talking of treating or curing autism. Implication: autism is a disease (in case I haven’t said this enough) and autistic people have to become neurotypical in order to have a good life. Alternative: talking of supporting autistic people, respecting the needs and opinions of individuals who do want to lose their autistic traits, while striving to make the world a more comfortable place for autistic people to be themselves
6. Ableist language: complimenting someone on how their autism isn’t obvious, or pitying them when they mention they are autistic. Implication: being autistic is lesser. Alternative: asking someone what autism means for them
7. Ableist language: prioritising someone passing as neurotypical i.e. something they’re not. Implication: autism is shameful. Alternative: prioritising emotional wellbeing and learning how to manage difficult situations
8. Ableist language: amplifying autism stereotypes. Implication: autistic people are all the same. Alternative: amplifying what autistic people say about their experiences
9. Ableist language: “epidemic”. Implication: autism is a disease (notice a pattern here?). Alternative: increase in awareness and diagnosis
10. Ableist language: “risk of autism”. Implication: yep, you got it – autism is a disease. Alternative: “increased likelihood”
11. Ableist language: functioning/severity labels. Implication: how “neurotypical” an autistic person comes across, without taking into account specific strengths, struggles, and needs. Alternative: describing specific strengths, struggles, and needs
12. Ableist language: resources that only talk as if an autistic person might be someone’s child, friend, etc. (with the exception of those specifically talking about parenting/befriending someone on the spectrum). Implication: forgetting that an autistic person might also be the “someone” they are addressing. Alternative: resources that educate neurotypicals AND acknowledge autistic people
13. Ableist language: describing autism as a disease. Implication: honestly, do I even need to say it at this point? Alternative: describing autism as a neurological condition/difference

Original article: https://www.liebertpub.com/doi/10.1089/aut.2020.0014?fbclid=IwAR1FyM1cVwRebaISLJ-2GhEJZoQ_HzJm16VvpXC3hK7OiW7H4ySIfDa2wkQ&

Body image

The other day, I came across an article showing images of glamourous plus sized women to prove that we don’t need to be slim to be beautiful. It was trying to send a positive message: that you don’t have to conform to other people’s standards. Yet it still received a lot of negative comments saying we shouldn’t be promoting obesity because it’s unhealthy. To counter that, some people argued that not all heavy people are unhealthy and not all slim people are healthy. Which is true. But is this even a relevant argument?

My first thought was that while health can affect a person’s physical appearance, health and beauty are not the same thing. I do understand that being overweight or obese comes with health risks. If someone is trying to lose weight for the sake of their health, then I completely respect that. I just think it should be their choice for the sake of their own wellbeing.

I also realise how easy it is for me to share my opinion on body image as a tall, slim (ish) young woman in good physical health. Unlike many young women, I have never been massively insecure about my appearance. I sometimes think this is ironic given how many things I am, or have been, insecure about. I never expected to be writing a blog post about physical appearance because it isn’t as important to me as most things I talk about on here. But recently I realised that there are things I want to say about this topic that I think are important.

Don’t get me wrong, I like to look presentable. I try to live a (mostly) healthy lifestyle. I am guilty of worrying about my weight, though in my case I think that’s partly a control thing, and I realise I’m not alone in that. I like clothes that make me feel good. If there’s a special occasion, then I’ll happily wear more make-up, accessories, and fancy clothes. I can make myself prettier when it matters. It’s just not a priority for me.

In short, I think anyone can make the best of their appearance if they want to, regardless of their shape, size, health, age, colour, gender, or whatever. More importantly, none of the above should have any bearing on a person’s right to be loved, respected, and represented. We need to be able to embrace our identity and uniqueness, and as cliched as that sounds, it sometimes feels like people forget that.

To conclude, here are a few snapshots of my physical appearance at its finest:

Look at that face

 

Looking festive

 

All the folds

 

Macarena

 

An actual (handmade) mask, not the metaphorical one I’m always banging on about

 

To be fair I often pull that face during any interaction with my stepfather

Summer sensory sensitivities

Being on the autistic spectrum means that sensory sensitivities are a part of life for me, and therefore a recurring topic on my blog. It’s not always a case of being overwhelmed by noise, people, and general confusion in a busy airport or during a long day at uni, however. Sometimes it’s the little things that are impossible to ignore. So while my brain recovers from heat-induced insomnia, let me summarise the sensory issues of these past few days and weeks.

If there’s one time of year when sensory sensitivities are rife, it’s during the summer. Don’t get me wrong, there are many things I like about summer. I like being outside in the sun surrounded by nature. I like more hours of sunlight. But when I’m so hot I can barely move, I’m always a teeny bit relieved when things cool down.

The biggest issue for me is sleep. During a heatwave, I know how to keep cool during the day, but night is a whole other story. Having a fan helps. Unless it rattles, then I can’t ignore it. Opening the window also helps. Except when there’s traffic outside, or people staying out late and talking. Good earplugs block out any sound. But until I get used to them, I’m constantly aware of them. As for covering, summer duvet? Too hot. No covering? Can’t get comfortable. Get up, get bedsheet. But what do I wear? Pyjamas feel too hot. Vest is fine except when it gets twisted. Underwear only may work or I may get too cold by morning. And…now I’m too awake to settle.

And if I don’t have enough to keep me awake, there will always be insect bites. I have been a walking snack bar for insects ever since I can remember, and have managed about 100 bites in the space of a two week holiday in the past. Insect repellent is smelly, sticky, and not always effective. But if I don’t use it when abroad, all the itchiness and scratching make me look and feel like I’m experiencing a flea infestation.

Then there’s the topical issue of not touching your face and eyes too much right now. As someone with chronically dry eyes (yes, that is an actual diagnosis I have had) and hayfever, not touching my eyes has been impossible. Unless someone invents a cone collar for humans, I am going to have to keep myself dosed up on eyedrops and antihistamines. And even then, I can’t make any promises.

And finally, hair. Dark hair soaks up heat. Thick hair traps heat. If your hair is as thick and dark as mine, you might as well be wearing a permanently heated woolly hat. Tying it up lets my neck feel the breeze. But then I will inevitably be aware of the hair elastic pulling and hair clips pinching until I take it down again.

So to combat the disappointment of days getting shorter and weather getting bleaker, I comfort myself with the anticipation of comfortable sleeping and less itching. Because each season has its pros and cons, and we might as well take them as they come!

My blogging experience and what I have learned from it

When I first considered blogging, I was trying to figure out how best to hone my writing skills. It sounded like a good thing to do, and in my head it was something that real writers did all the time. Except I wasn’t a real writer. So there was no way I was actually going to try it myself. Right?

Then when I was 19, I got Blogging for Dummies for Christmas. So naturally I decided to give it a try. Not that it would ever take off or anything.

Once I started, it was fun! I liked how much easier it was to express myself than in the real world. As time passed, both my blog and my life saw various chapters come and go. The turbulent university phase, where I experimented with poetry and that weird 4 temperaments reflection series. My internship and the aimless job hunting that came before and afterwards, during which I reflected on topics such as mission trips, rude customers, and whether or not autism should be healed. Seven years and about 180 blog posts after I started, I thought I’d reflect on what I have learned from blogging.

The first thing was the importance of writing with feeling. If something makes me feel, it should make other people feel. After my internship’s mission trip, I tried to capture the lows of an anxiety attack on the plane, and the highs of going on an adventure with friends. When my neurotypical “mask” was failing me, I wanted people to understand how draining it was to maintain in the first place. When I was despairing about how anti-vaxxers think autism is a fate worse than death, I wanted to emphasise how it feels knowing that some people think I’d be better off dead.

Similarly, if something makes me laugh, it should make other people laugh. The trick is to make it relatable. When I wrote about some of my embarrassing stories, I was prepared to sacrifice my dignity for the sake of entertainment. I wasn’t prepared for it to become one of my most popular posts ever. I wasn’t sure whether to be flattered by the attention or disconcerted by how many people were amused by my mishaps. But hey, it got a lot of laughs.

One of the trickiest things is getting the beginning and ending just right. Too long, and you’re rambling. Too short, and it doesn’t flow. To introduce and conclude a point, it pays to be conversational. But not go off on a tangent that distracts you altogether.

The other is striking the balance between opening up but not too much. This depends on what you – and people you write about – feel comfortable with. Anyone can read a blog, so for me it’s important to remember what I’m prepared to disclose publicly, and what I’m not.

And finally, with a blog, you have the power to use publicity for good. If an issue matters to you, write about it. If you have challenges that most people don’t, educate by sharing your perspective. More than ever, we have the potential to make even a small difference to whoever we reach out to. If nothing else, that has to count for something.

My recent endeavors: Aspie Cat, National Autistic Society interview, and the Thoughty Auti podcast

Over the past few months, I have taken my autism themed work beyond my blog, and I thought I would share my experiences with my latest endeavors on here. Starting with:

Aspie Cat

I have often compared my autistic struggles with certain cat traits. Things like touch sensitivity, stereotypes about being unfeeling, etc. Then last summer, the idea suddenly came to me: why not portray this in a series of comic style drawings? I drafted a cover page during autumn, and started drawing in earnest in November. Before I knew it, these cartoon shorts became part of a story. Which I am hoping to turn into a graphic novel.

As a child, I loved making up animal stories and spending hours drawing them. You could say I’ve fallen back on an old hobby. The scenes I portray are based on real life issues that I want people to understand better. At the same time, I like to inject a bit of humour into them, because there are some situations you have to laugh at.

National Autistic Society interview

Over the years, my family and I have been following the National Autistic Society. A few months ago, my stepdad contacted them to promote my blog. Long story short, he put them in touch with me, and in February I was interviewed via email for Stories from the Spectrum!

Stories from the Spectrum is a section on the NAS website that features interviews with autistic people from all walks of life. I’m pretty sure that had it been a face-to-face interview, my brain would have frozen and I would have forgotten every relevant part of my life story. As it was, I spent over an hour rapidly handwriting notes until my hand ached. Four journal pages and a long email later, I was satisfied.

The publication date in April initially seemed like ages away. Given that the pandemic, lockdown, and my hasty move back into my parents’ house happened shortly afterwards, in hindsight it felt like another lifetime away. But hey, I’m proud to have made it on there! I talked about my childhood, my experiences at church, and the assumptions I have dealt with about my race and my autism. Go to the link below and have a read!

Meanwhile, if you want to learn more about real life autistic experiences, then browsing through other interviews is a must!

My interview: https://www.autism.org.uk/about/stories/grace-liu.aspx

Thoughty Auti podcast

And finally, I had the honour of featuring on the Thoughty Auti podcast. It is a podcast that covers topics relating to autism and mental health, and is run by Thomas Henley, YouTuber at Aspergers Growth. And my episode was released yesterday!

Back in May, we planned to talk about the impact of early life changes (e.g. moving countries) and my struggles with being biracial and autistic. At first I was so nervous I was digging my nails into my arms without noticing, but Thomas was super easy to talk to, and we actually had a fair few laughs! I did have a classic autistic moment at the end where he said goodbye to the audience and I had no idea he was expecting me to do the same, but that got removed.

So if you want to know about racist schoolboys, being outnumbered by white neurotypicals, and how Thomas and I went off on a tangent about cheese, here it is (you can also find it on YouTube and Apple):

NB: to anyone who’s listened to it, I didn’t think to ask Mum if I’ve ever counted as an immigrant until too late (I haven’t).

Oversharing: the autistic way

When I interact with new people, nine times out of ten, my natural inclination is to metaphorically hold my cards close to my chest. I’ll be polite. Sometimes conversational. On a good day I might even put them at ease with my sense of humour. I might just take a while to really feel comfortable with them.

Occasionally, however, I’ll meet someone who I connect with quickly and naturally, and suddenly I’m at risk of talking too much if I’m not careful. I’ll be rambling about the good and bad things in my life, what sort of day/week I’m having, whatever entertaining anecdote I can think of etc., feeling pretty good. And then my anxiety will resurface and leave me thinking: why did I talk so much?! What the HECK did I just say?!

Some autistic people have been known to be prone to oversharing. Sometimes known as info dumping. That is, talking for way too long and/or in too much detail. Which sounds ironic when you think about how one of the main struggles of autism is social interaction. But because we struggle with social etiquette, we are caught between that need for emotional intimacy and not knowing how to achieve it. So we either clam up and look antisocial, or boycott all the bog standard small talk and rattle off everything we are thinking or feeling.

Or we might talk at length about our special interests. It’s our way of trying to connect with people. We’d far rather talk about something close to our hearts than make aimless chit-chat. I think I’m less prone to that than I used to be. When I was a child, I considered my encyclopaedic knowledge of cat breeds to be a core part of my identity. What was so weird about giving a 1< hour lecture on the subject to everyone I met?

It gets awkward when it comes to sharing more private things. My mum was persistent in getting it into my head that it’s ok to talk about such things discreetly with close female friends, but not loudly, publicly, or to boys. Which is a principle I’m thankful for. Without it, I would have spent my teenage and uni years baffled by how some girls talked loudly about periods, toilet details, or sex in a room full of people, while others avoided such topics like the plague.

What I’m less clear on is how much I’m expected to say when someone I don’t know closely asks how I am. Saying “fine thanks” might sound boring or antisocial if the other person wants a proper conversation. And if I’m not fine, I’m not good at lying, even if I don’t feel like talking about it. But then I’ve embarrassed myself in the past by talking about something specific that was bothering me, only to realise afterwards that it was more than the other person was expecting. I might be my own worst critic, but I sometimes feel like I can’t win!

So to anyone who has been subjected to autistic oversharing, please bear with us! We are trying to connect in the way we know best. If you need to change or end the conversation, a firm but gentle pointer will go much further than unspoken expectations.

Lockdown losses and the life left behind

Just over a year ago, I moved to Leicester to be nearer my job and start a new chapter in my life. I spent the best part of the day arranging my entire room to my satisfaction so that it felt like home. I created a routine around my work that didn’t involve a 7:30am commute. I was nearer my Leicester friends. I had more time and energy to invest in my friendships. Life was good.

Last weekend I paid a flying visit to my room in Leicester to collect more of my stuff. Everything was gathering dust. Many things I had left behind were out of place. A few were exactly as I had first arranged them. When I had last been staying there, life had been completely different, and yet it still felt like my room.

Is it strange to be grieving a life left behind? When I hastily packed up most of my things and headed home before the lockdown, I was ashamed of how painful it felt when I had it easy in many ways. No-one in my life was dying (mercifully still the case). I had a family I could go and stay with. I could stay in touch with my friends. I would always have money and food. Yet I was still close to tears. And when briefly going back made me relive just a touch of that sadness, I realised maybe there is a logic to it after all.

For me, making the difficult decision to hastily pack up my room and move back with my parents was a stark reminder of how I was leaving my life behind. It was also the action that finalised it. It meant facing the reality of the crisis and all its implications: fear for the safety of myself, my friends, and my family, and uncertainty surrounding the future. I was leaving the room I’d grown to love. I was leaving my working life as I knew it. I was leaving the friends I was used to seeing on a regular basis. I would not be able to still see Mary as normal before she left. I was leaving my routine and the independent lifestyle I had established.

When life changes dramatically into a time of fear and instability, we very often do not get to say goodbye to the way things were. We feel bereft of what we had before. We feel helpless. We might have more things to process than time to process them. Some people have been separated from close family members. Many people are now fearing for their own or others’ lives but are powerless to do anything.

I realise this post is way more cliched and less conversational than I usually aim for. I suppose what I want to say is no matter how well we settle into a new way of life, moments of sadness can still crop up. Because with this crisis comes loss. And to come to terms with that loss, we have to be able to feel it.

Autistic meltdowns vs shutdowns

A few years ago, I wrote about autistic meltdowns. Back then, I just thought the word “meltdown” was a catch-all term for any behavioural signs of mental, emotional, or sensory overload. But meltdowns are typically characterised by physical and emotional outbursts and an obvious struggle to deal with one’s immediate situation. And very often I find it hard to express when I’m feeling overwhelmed, because it’s just not in my nature to openly explode.

My main lockdown project comprises writing a non-fiction book about autism, something I have had very little time for in a normal working life. This has required a lot of research, and in reading about the ins and outs of autistic meltdowns, I stumbled across a related, but less commonly used term: autistic shutdown.

Shutdowns and meltdowns are two sides of the same coin. They are both primitive coping mechanisms for dealing with a crisis. The difference is how they present themselves. Someone having a meltdown might lash out. They might shout or scream. They might display repetitive behaviours. A shutdown, on the other hand, is usually far less obvious.

When I have a shutdown, my brain and emotions have reached breaking point. For me, it means being desperate to hide from the outside world. It means being too bewildered and unfocused to function. It might mean having to leave the room because I can’t handle the situation. It might mean crying because of some small trigger that has unleashed festering negativity (though I hate crying in front of people, and will either fight the urge or shut myself away if possible first). Most of all, it means being stuck in a daze with my mind in turmoil and my social skills gone.

But because my instinct is to internalise and withdraw, I can’t always communicate my struggles. So to other people, I might just seem really flustered. I might be uncharacteristically irritable. I might be even more socially awkward than usual. I might come across as confused, or even downright stupid. I might seem moody and anti-social. Or I might be keeping quiet and looking like nothing’s wrong.

As with meltdowns, no two autistic people will experience shutdowns in the same way. Or in the same situations. Airports and the London Underground network always leave me exhausted. When the stresses of 3rd year uni assessments reached a boiling point, with deadlines looming and my coursemates hating each other, I had to shut myself in the bathroom at one point when it got too much. My graduation day was so draining, my mum had to find an empty room for me to just sit quietly. And now we’ve all had to say an unceremonious goodbye to life as we know it, while learning some uncomfortable truths about how the world works. Which makes this a fitting time to be talking about crisis coping mechanisms.

To conclude, I will re-iterate what I said in my meltdowns post about managing these situations. Be aware of what a shutdown means for you, and what might trigger one. When anticipating a high-stress situation, learn what to expect from it, and plan where, when, and how you can recharge. Stick with someone who understands you, and if no-one does, explain to them what you might struggle with while you still feel able. Because you deserve to be heard.

My responses to common opinions on Black Lives Matter, and some petition links

I’m not going to try and make this blog post conversational or entertaining like I usually do, because this isn’t about making myself or my writing look good. This is just a list of points I want to get across – including some that have already been said – in response to things I’ve heard people saying about Black Lives Matter.

To anyone who says all lives matter: yes, all lives do matter. And people from various backgrounds are in danger from all kinds of crimes. But the bigger picture is that some lives are in far more danger from racial hatred than others. The “all lives matter” sentiment is commonly compared on social media to someone watching a burning house being extinguished and saying “but all houses matter! Why aren’t the others being extinguished?”.

To anyone who insists that they won’t be ashamed of being white: being white in itself isn’t something to be ashamed of, and no-one is saying it is. Non-black people are just being encouraged to listen to black people and examine their own biases. That makes some people defensive because unconscious bias is an uncomfortable thing to face in yourself. But we all have it in one way or another. Like that time ages ago when I got talking to another East Asian looking person and thought they were from China. Just an example.

To anyone who says racial bias and white supremacy aren’t real: yes they are. Take it from me, a mixed race woman. Some people have made assumptions about me because they see me as a stereotype. Others have shouted inane things about my race at me in public for a laugh. Certain kids were rude about it at secondary school. Again, I’m not trying to make this all about me. I’m just using my own experiences to prove my point.

To anyone who thinks white privilege doesn’t exist: white/non-black privilege doesn’t mean your life is free from hardships. It just means that your skin colour, and the way you are treated because of it, isn’t among them. I have never feared for my life because of my race. I have never been seen as a thug or a terrorist. And I have never written a blog post like this before because I have never had a personal reason to. These are just a few of my many privileges.

And to anyone who says they don’t see colour: this is a well meaning sentiment. People who say it are generally making it clear that someone’s skin colour isn’t important to them. But seeing colour isn’t the problem. Sometimes we need to see colour to see issues like this. Discriminating because of colour is the problem.

To finish, here are few petitions you can sign:

https://www.change.org/p/suspend-uk-export-of-tear-gas-rubber-bullets-and-riot-shields-to-usa?fbclid=IwAR1B_gGTLGHy6KgWTfLD8kYU8Le4zzDlpVHn2ilTTv05Pvs6QAh7b111hnk

https://www.change.org/p/mayor-jacob-frey-justice-for-george-floyd?utm_content=cl_sharecopy_22414602_en-US%3Av7&recruited_by_id=fa788df0-a4d7-11ea-8cea-cfb954c70557&utm_source=share_petition&utm_medium=copylink&utm_campaign=psf_combo_share_initial&utm_term=psf_combo_share_initial

https://www.change.org/p/free-siyanda?recruiter=292334657&utm_source=share_petition&utm_medium=facebook&utm_campaign=psf_combo_share_initial&utm_term=psf_combo_share_initial&recruited_by_id=be69d270-f581-11e4-9a29-4ff9d8c6606c&utm_content=fht-20433063-en-gb%3Av2

https://act.colorofchange.org/sign/justiceforbre-breonna-taylor-officers-fired/?sp_ref=647898062.176.206799.f.654065.2&referring_akid=.10786968.tSzvdi&source=fb_sp – NOTE this one only works for people in the US

The ambiguity of lockdown

Right now, I’m in a state of conflict over my relationship with social media. On one hand, I’m trying to make the most of the extra time not just to write more, but get my work out there, and in this day and age, I can’t do that without the internet. On the other hand, I fear too much engagement with social media will drive me to despair. Why?

There are several reasons, but the one I’m thinking of is this. My main autistic struggles include dealing with ambiguous expectations and mixed messages, which the internet is full of. When Covid 19 took off in earnest, I couldn’t tell how worried we were supposed to be. First it was just a new kind of flu that most people weren’t worried about. Then we had to stock up on essentials. But not over-buy. But also get there before the people who do over-buy. Then I ended up packing my things at short notice, moving back in with my parents, and not leaving the house except for exercise.

Now briefly visiting other people is ok if you follow the rules (which keep changing). Some places are re-opening. Some aren’t. Some kids are going back to school. Some aren’t. We’re allowed to linger a bit more in parks and beaches. But not too much. And it’s all on the brink of changing again. Which is important for the economy. But also dangerous.

Plus I still don’t know how worried to be about the virus itself. My chance of dying from it would be below 1%. Yet hundreds of people die from it every day, while the rest of us need to keep 2m apart. We may get a vaccine this September, or next September. No-one can agree on how effective it’s likely to be. If all this happened 15-20 years ago when even the thought of going near someone with a cold terrified me, I would have panicked too much to be able to function!

I like to think I’m doing a good job of dealing with the lockdown itself. I have a routine. I’ve been honing my skills, learning new recipes, and getting fitter. I’m aware that I’m privileged when it comes to my health and my living arrangements. I just find the ever-changing guidelines and news exhausting to keep up with. I like knowing what’s going to happen, and feeling in control of my life. And having those removed has been hard.

So for the time being, I’m carrying on as I have been, and checking with my family and other people I know about what we can and can’t do now. I’ve had ups and downs, but I’m learning to be at peace with not knowing what’s going to happen. I’m taking control of my life in other ways. I’ve done more writing in two months than I’ve managed these past two years! And for my own sanity, I’m trying not to get more emotionally invested in the news than I have to. I realise apathy isn’t always a healthy attitude. I’m just aware that if I get overwhelmed by what might happen soon, I can’t be productive now.