The Toll of Thoughtless Comments

It’s only January but so many of my autistic friends on Twitter are already done with this year. They are frazzled, exhausted, burnt out.

Because we never seem to catch a break. We are never given the benefit of the doubt. Allowances are never made for our neurology. We are constantly having to watch what we say, how we say it, or we get accused of being rude, being aggressive, being in some sort of nefarious gang.

And yet non-autistics can say what they want, in whatever way they want. Especially when it comes to conversations about autism. I’m not talking here about the obvious trolls, the people firmly anti-autistic, the ones looking for a cure for us poor suffering specimens.

I’m talking about the person who maybe cares deeply about their autistic child or sibling. Or who has a friend who has an autistic cousin. Or maybe who works with a few autistics now and again. Or learnt about us on some course. They might be someone who is genuinely well-meaning, or at least means no harm. But who has the privilege of not having to think about the language they use.

The person who pops into a conversation about how autistics are being abused and polices our use of identity first language. Or goes on about functioning levels. Or says that we do indeed “suffer” from autism.

And then….goes on with the rest of their lives. One second out of their lives to type a comment and then move on. Or, if challenged, to dig their heels in and get indignant, but to eventually just shrug and put on the kettle or go back to work.

While, the autistics in the conversations are left reeling. We can’t just move on, pick up where we left off. We are left in emotional turmoil. We have to hide our rage and our tears though. Or people will ask why we’re so worked up about a few thoughtless comments from random strangers on the internet.

It’s not something that we can easily explain. If it were one or two comments ever, it might be different. But it’s relentless. What may be a simple comment to the non-autistic person, may be the fifth, tenth, fiftieth similar comment we have been exposed to that day.

Death by a thousand cuts.

And so, I am here to beg. Plead. Implore.

If you are not autistic, take a huge deep breath, count to ten, and consider do you really have to write that comment. Or can you just shrug and move on with your day without doing so.

Because, to you, our words may be irksome. An irritation. But easy to just ignore.

For us, your words leave deep festering wounds.

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When I Am Old

My favourite poem is one by Jenny Joseph called When I Am Old. I first read it when I was in second class, so aged 7. We didn’t have to memorize it, but just draw a picture to go with it. I’ve no idea what I drew, but I did memorize the poem anyway.

I have been thinking of it a lot lately. Because it reminds me a lot of autism, and specifically the way we mask throughout most of our lives. The part of the poem that starts with “But now we must…” is the way we behave when we are masking. Wearing proper but uncomfortable clothes. Paying rent. Setting a good example to our kids. All those things that society demands of us.

And the parts of the poem that describe what she will do when she is old…that’s our authentic autistic selves. And while I am edging closer to that as I get older, right now I’m at the part where I am “practicing” being more autistic. Letting my mask slip a bit more each day. “So people who know me / are not too shocked and surprised.”

No wonder I have always loved this poem!

When I Am Old.

When I am an old woman I shall wear purple

With a red hat that doesn’t go, and doesn’t suit me,

And I shall spend my pension

on brandy and summer gloves

And satin sandals,

and say we’ve no money for butter.

I shall sit down on the pavement when I am tired,

And gobble up samples in shops and press alarm bells,

And run my stick along the public railings,

And make up for the sobriety of my youth.

I shall go out in my slippers in the rain

And pick the flowers in other people’s gardens,

And learn to spit.

You can wear terrible shirts and grow more fat,

And eat three pounds of sausages at a go,

Or only bread and pickle for a week,

And hoard pens and pencils and beer mats

and things in boxes.

But now we must have clothes that keep us dry,

And pay our rent and not swear in the street,

And set a good example for the children.

We will have friends to dinner and read the papers.

But maybe I ought to practise a little now?

So people who know me

are not too shocked and surprised,

When suddenly I am old

and start to wear purple!

Jenny Joseph

The Science Around Being Fat….paraphrased

A few years ago, my special interest was based around the question of why people get fat. I read so much research on it, paper after paper, and I learnt a lot. But I realised that a lot of the research had an underlying anti-fat bias. The researchers would write in their conclusions that people should still be encouraged to lose weight, even though the data in their very own studies showed that this was not only unachievable, but harmful. I also realised that most people I knew simply could not understand scientific papers, that they might as well be written in a different language.

So, in this post, I’m going to try to write out what I learnt, in easy to understand language. A “literature review” as it were. It was always my favourite thing to do in university and I think I’m quite good at it. Reading research, taking the most important points, and paraphrasing them for a wider audience.

I’m not going to pepper this with a lot of links or citations. I may include some of the more important studies, but so many of them say the same things in different ways, it would get rather tedious to list them all. And anyway, I’m writing this post so you don’t have to go through all the studies yourselves.

Ok, so, let’s begin!

There are, broadly speaking, two types of fat people. There are those who genetically fall on the fat end of the bell-curve that is human weight. Just as there are some families where most people are tall, or have red hair, or are autistic, or any other genetic trait, there are some families that are genetically fat. Their ancestors were fat, going back many generations. Human weight, it turns out, is highly heritable.

It’s not that easy, though, to know if your family is one of those genetically fat ones. That’s because the other type of fat people, who have what I call, for want of a better term, “acquired fat” can also be multi-generational. This is because the cause of this type of fat, though not genetic, often tends to effect the history and environment of these individuals. So your parents, grandparents etc may be fat, not because it’s in their genes, but because the same factors that effect them are also effecting you. If these factors were removed, these people’s weight may be shown to be lower, genetically, than it is.

And what is this cause? What makes people fat, apart from their genes?

The answer may seem complicated and varied, but really it’s just one word: stress.

All the research that shows so many causes of weight gain, really boils down to the same thing. When the human body is under stress, mentally and/or physically (as you really can’t divide the two), it gains weight.

This stress can be caused by so many things: poverty, lack of sleep, stigma, bullying, loneliness, abuse, mental illness, physical illness, dieting, side effects of medication, endocrine disrupters (plastics etc), pollution, being targeted by bigots (racism, misogyny, homophobia, etc).

Each one of these things, on their own or combined, sends a clear signal to the brain “we are under attack”. And the brain’s response “we need to gain weight”. Weight gain therefore is a stress response. The fat organ is not simply an organ for storing energy. It is also a very important producer of hormones. And so many of these hormones are ones that are produced in response to stress. They are our stress-busting response. And so, to produce enough of these hormones to respond to increased stress, we need a larger fat-organ.

I need to emphasise this point, as it’s the main point of this blog post: gaining weight when under stress is a GOOD thing. It is your body behaving the way it needs to, to counter the stress. Yes, I know this sounds counter-intuitive. It requires a shift in thinking so great, it’s a paradigm shift. But really, truly, you need to trust me on this. And yes, I am expecting push-back on this point. It seems to be too difficult for people to accept. But I have spent years reading and thinking and reading some more, especially the very latest research that has not yet trickled into the mainstream.

One bit of research that has sort of made it into the open, is the “obesity paradox”. This is where it’s shown that the outcomes for people who have had heart attacks, have diabetes, or certain surgeries, is better if they are fat. Obviously, if you see being fat as a protective-mechanism of the body’s, then it no longer can be called a “paradox”. That word just shows the amount of anti-fat bias in the minds of the researchers and medical professionals. (This study concludes that the word paradox might need to be re-thought. Note the anti-fat bias in the language of this study though.)

One piece of research that I do want to link to, is this paper by Katherine Flegal in 2013. In it, she showed that “overweight” people live longer than “normal weight” people. People who fell into the “grade 1 obesity” range are just as long-lived as “normal weight” people. It’s only when you get to grades 2 & 3 obesity that you see a reduction in lifespans. But guess who lives the shortest lives? Underweight people. And this study takes into account things like smoking, pre-existing diseases (eg cancer can lead to being underweight) etc.

As I said before, the natural response of our brains to stress is to desire weight gain. We eat more, move less, and maintain this higher weight as best we can. People, misunderstanding this need for weight gain, and it’s protective effects, as well as being pushed and goaded by society and the weight-loss industry, try to counter this by dieting. Which is incredibly damaging. You are literally fighting your body’s survival mechanism. And this is also why over 97% of diets eventually fail in the long term. Because your body is fighting for it’s survival.

There are a group of people for whom this survival mechanism does not kick in. Our bodies/brains don’t react in the right way to stress. Our appetite-triggering hormone (leptin) levels decrease instead of increasing. These are the people with eating disorders, both diagnosed and undiagnosed. We lose our appetites when stressed. And this is not a good thing. We have the shortest life-spans of all.

And as for those who fall into the “grade 2&3 obesity” brackets? Well, there’s only so much stress a body can handle before stress-fighting hormones have no effect. The body keeps increasing fat levels, to pump out more and more hormones, but it’s not enough. And so much of this stress is due to fat stigma. The more stressed the fat person is, the more weight they need to gain to counter it, the more society stigmatises them, the more their stress levels rise, and so the cycle continues in an upward spiral. Fat stigma, literally, kills.

I hope the takeaway you get from this post is this: to improve the lives of fat people, the answer is not to force them to lose weight. It is to reduce the stress in their lives, so they don’t need to have as large fat organs to produce enough hormones to keep on living. Don’t fight fat. Fight poverty, stigma, lack of sleep, pollution etc etc. Accept that there are some things that you can’t fight directly eg genetic illness that stress the body/mind. But you can fight the ableism that makes this stress worse. Fight bigotry. Fight prejudice.

Fighting these things, incidentally, helps everyone, not just fat people. And is the right thing to do anyway. So, if you are “worried” about fat people’s health, think about what you can do, today, to reduce the stress in the world. This is the real fight. And we are all in it together.

Introducing….Amy Goh

I first met Amy on an online forum a few years ago. We seemed to have a lot in common and just got along really well. When I discovered what a talented artist she was, and that she was taking commissions, I asked her to draw my mother. The result was spectacular.

[image is Amy’s drawing of my mother. It is in pen and ink, in her distinctive style, and featuring motifs from my mother’s poems eg Horses, water, hints of Japan, all enclosed in her hair.]

And when Amy recently informed me that she was autistic, I knew I had to feature her in this blog. I also decided that I would like to feature other creative autistics, one per month, and that’s how the concept of my “Introducing…” series was born.

So, here is Amy, in her own words and images….

How would you describe yourself?

I’m a self-taught artist who draws surrealistic landscapes that map out a personal cosmology with motifs and symbols particular to my own growth and psyche. I work primarily in pen and ink but lately, I’ve been exploring inkwash, papercut / papercraft, bookbinding and needle-felting. I spend most of my time daydreaming, reading and generally being a hermit.

When did you first realise you were autistic?

It happened as a kind of accident, initially. A Facebook friend did an Aspie Quiz on a BBC health website and got a normal score. I took it and my numbers were actually above the autistic range. I thought there was something wrong with the test so I did more research, read many blogs and completed more AS quizzes but they all revealed that I was in the autistic range. I then realized that some of the things in my life, such as my tendency to focus intensely on one thing or my inappropriate bluntness, could be explained under the lens of autism.

In a way, it was rather liberating. All my life, I had thought or had been told that there was some things innately wrong with me, and now I had a name for it. I’ve always been told I’m from another planet (my nickname in high school was “space cadet”) or that I need to stop doing X, Y and Z behaviours in order to be socially accepted. Even the way I walked was atypical, but how do you teach someone to walk ‘correctly’ without making them feel they are grotesque? I had even gone through a couple of torturous years in which I forced myself to fit into that elusive category of “normal” (spoiler: it didn’t work). Discovering autism was, in a way, like discovering a language I could describe my experience of difference with. It was wonderful.

How do you think being autistic has impacted on your art?

Art has been the most important force in helping me to see myself on my own terms, using my own arcane language. I used art as a type of language from which I could draw myself into being. That was how it started. Halfway through my 2+ year stint of attempted normalcy, I started drawing. My initial drawings were frantic and manic. I felt like I had discovered a way to express who I was on the inside, and I didn’t stop producing a drawing or more weekly for the next three years. Art helped me to find my way back to myself, to understand myself. Of course, all this happened on a subliminal level. I had many years of innate wrongness and “I’m a bad person because that’s how I was born” to disentangle.

Also, I was mute at home at the time I started drawing. I lost language for a few years, so you could say that drawing was a way to give me back that ability to speak. I could speak eloquently in school when I needed to express intellectual ideas but somehow I would stutter when I tried to say a simple sentence at home. That splitting of myself was also something that had to heal, and art was a bridge between those two worlds: one of silence and shame, and the other of vibrancy and the constant swirl of ideas.

Now, I realize my way of sensing and feeling can actually be a gift. I am a tactile feeler, meaning I sense objects with my mind’s fingers/tongue. Ironically, I have a rather bad visual memory for an artist, as I do not remember things as wholes but in fragments of detail, texture, microcosmic grain. You could say I see the world in macro to the extent I’m unable to zoom out and see the larger picture. For example, I can’t visualize a whole person in my head: it’s impossible. But weirdly, I am able to sculpt something from wool without much reference because I remember the feeling of the object with my mind. This is actually a really great asset for the type of art I do. All of my art consists of a complex intricate web of details woven together. The funny thing is that I don’t actually remember the ‘whole’ of my drawings at all. I only remember pieces of them, which are connected to a smell, sensation or thought I had at the time I was drawing it.

What advice would you give other autistics who wanted to develop their creative side?

I strongly encourage other autistics to embrace their creative side because I think it can be a game-changer or even a lifesaver. Honestly, I think anything that enables you to be able to find your own language is the biggest gift you can ever give yourself. Art has the potential to give you the tools to express what is inexplicable in your own experience. I still feel like most of the reality I live in cannot be expressed in physical form. But the drive to express it in words, textures, paper, ink, scraps and other bits and pieces: that’s motivation enough for me create.

I feel that people on the autistic spectrum have a fundamentally different way of experiencing the world. By being outside of normal social or even sensory confines, we have a special perspective on what society considers ‘normal’. I think that it’s important to express that difference to foster compassion and perhaps give others a glimpse into how diverse and rich the world truly is when you peel apart the layers of your preconceptions.

“My Soul is a Series of Cascading Dolls”

“Inwards, I Turn”

“Lightness”

Amy also makes cute hand-bound books, and felt animals. She takes commissions for these, and for her drawings and papercuts. You can see more of her work via Instagram, Facebook or her website.

Instagram @missinkblot

FB: www.facebook.com/inkyapocalypse

website: www.atlantisdreaming.org.

“You don’t look it.”

Last night I watched the documentary “Unrest” by Jennifer Brea, on Netflix. It documents the lives and struggles of people, like herself, who have been diagnosed with CFS/ME. The people in the film are mostly those with the severe form, who often don’t leave their homes or their beds. The ones who are hidden from view, the #MillionsMissing.

I have a lot of thoughts about the film, and I’m sure I will write about many topics inspired by watching it. But right now, I want to write about Jennifer’s face. Huh? What does her face have to do with anything? Let me explain.

The film starts with her lying in the floor, unable to move. All we can hear is her breath. Slowly she inches her way into bed. And all we can really see is her face. And it looks awful. We can clearly see how exhausted she is, how difficult it is for her to do anything. Throughout the film, there are numerous closeups of her face. During her difficult moments, the pain, grief and trauma is etched upon her face. If someone said “this lady has CFS/ME”, nobody would doubt it. We can see it, because we have the privilege of seeing, in this film, something that usually remains hidden: her worst days.

But at other times in the film, her face is smiling, beaming even. She has maybe managed to walk a little, or met up with some friends, left her bed and her house. During these moments, if someone pointed out that she has CFS/ME, I can imagine some folks would doubt it. They might not say it out loud, but they would be thinking “she doesn’t look it”. Because they are only seeing her at her best.

And this is a situation that occurs to me, and the vast majority of disabled people, especially those with more “invisible illnesses” when we speak up about our diagnoses. “You don’t look it”. Because we are often actively trying to mask how tired we are, how much in pain, or how we don’t quite understand what’s going on. We hide our stims and our distress. Because we know they upset you. Or maybe we’re having that rare day where we are feeling less tired, less in pain, or are actually enjoying ourselves. You may be seeing us on the rare day we have managed to leave the house. You are seeing us at our best.

And so you judge us. Call us fakers. Think things can’t be “that bad” or that we are somehow “cured” now. But if you could peek into our lives, our bad days, if we recorded them and broadcast them to the world like Jennifer did, you would realise how wrong you are.

And so, I love this film. The rawness. The bad days. The despair. Because it shines a light on what too often gets hidden. On who gets hidden. And shows that there is so much more going on than what we portray when we leave our homes, what you choose to see.

And if we “don’t look it”, it’s simply because you’re not looking closely enough.

A little autistic?

“Everyone is a little autistic” is a sentence guaranteed to anger a lot of autistics. It is often used by non-autistic people to belittle us, to imply that our struggles are not so bad or so different from theirs. The usual retort by understandably angered autistics is “nobody is a little autistic. You’re either autistic or you’re not”. Unfortunately, that not entirely accurate.

I have taken a lot of “Are you autistic” type tests. And although I always scored highly on them, I often wondered about the cutoffs used in these tests. “If you score above X you are probably autistic”. What about those people who score just one or two points below X? Five points below? Who defined the cutoff as X and how? I realised that whether or not someone is autistic is not black or white. The same problem exists with the criteria used to officially diagnose autism. There is a grey area where someone can have some traits but “not enough”. I call these people “grey autistics”. In my opinion, that are autistic if they think they are. And often they are more autistic than they realise, as they may develop more traits as they get older or circumstances change, or they may have more traits than they realise, subtle traits.

There is a group of people defined in scientific literature as belonging to the Broader Autism Phenotype (BAP). These correspond with my “grey autistics”. They are close family members of autistics, often parents, who have some autistic traits but not enough for a diagnosis. At the moment, most research about them focuses on demonstrating the genetic nature of autism.

If these people wish to define themselves as “a little autistic” then I believe that is their right. However, this is not the same as saying “everyone is a little autistic”. Given that the prevalence rate of those belonging in the BAP is currently about 5%, and that of diagnosed autistics is around 2%, it is clear that 93% of the population is clearly not “a little autistic”.

(There are also “autistic cousins” who are not in the BAP but have some autistic traits. I have written a bit about those here.)

ARFID: an Autistic eating disorder?

A conversation amongst some autistic friends on twitter about eating issues, reminded me that this blog post is long overdue. These are just my personal thoughts into the links between autism and ARFID, as there hasn’t been much research in this matter, though there is an ongoing study into autism and eating disorders at Kings College London. (And if you’d like to take part, you can find the survey here)

Though you will find studies linking anorexia and bulimia to autism, not much has been written about those of us who are autistic and have eating issues unrelated to fear of weight gain. That said, it is common to find many of us with such issues. A Twitter poll I ran last year had over 200 respondents, 86% of whom said they had such issues. Obviously, a Twitter poll is in no way scientific but I do find them useful for seeing if I’m on the right track with an idea.

There are many eating issues that autistics have that fall under the umbrella of ARFID. If you need a reminder of what ARFID actually is, I wrote about it here.

One of the issues, often mentioned by parents of autistic children as being of concern, is the subset of ARFID that is known as Selective Eating Disorder. This is where the individual only eats a very limited range of foods. Obviously, many adults also have this issue, but some have been able to expand the number of tolerable foods over time. The reason behind this eating issue is often sensory. We intensely dislike certain tastes or smells or textures. It’s more than just being picky or not liking it very much, we will often choose to starve rather than eat the food in question.

Another subtype of ARFID is that caused by an “apparent lack of appetite or interest in food”. This is an issue that I have not really seen written about but that comes up time and again when autistics talk amongst ourselves. Quite often it is in the context of our special interests, when we are so focussed on these that we simply forget to eat, or don’t realise that we are hungry. This can happen at other times too, like when we are stressed or anxious, or often for no discernible reason. We often don’t have strong hunger cues until it is too late and blood sugar issues are what finally remind us to eat.

A lot of the autistics I speak to don’t have a diagnosis of ARFID, and most don’t realise they may have an eating disorder. They simply have “food issues”. I don’t necessarily think a formal diagnosis is needed or particularly helpful as it is not clear if the newly-developing strategies for ARFID are helpful for the autistic population. We often don’t react in the expected way to psychological therapies that help non-autistic people. It is certainly an area where a lot more research is needed.

I want to end this little piece by saying that if you’re autistic and have any of these food issues, you are certainly not alone. Although not talked about enough, I do think the issues with eating that autistics have are finally getting some recognition. I’m guessing that most autistics struggle with eating at various points in their lives. Not all of them will struggle to the extent required for a diagnosis of an eating disorder. But it can be a problem all the same. And I think that we autistics will be the ones to develop strategies that will help us to eat in a way that is healthy for us.

And the first step towards this is by talking out loud about it.

[image of a child with elbows on a grey topped table, with their cheek resting on one fist, looking glumly into the distance. Beside them is a pile of raw, whole vegetables such as tomatoes, peppers, lettuce and kale.]