Tag: autism

I updated “Design is Tested at the Edges: Intersectionality, The Social Model of Disability, and Design for Real Life” with selections from “Histories of Violence: Neurodiversity and the Policing of the Norm – Los Angeles Review of Books” to further emphasize nuance and context.

Neurodiversity is a movement that celebrates difference while remaining deeply nuanced on questions of (medical) facilitation and the necessity of rethinking the concept of accommodation against narratives of cure. The added emphasis on neurology has been necessary in order to challenge existing norms that form the base-line of existence: the “neuro” in neurodiversity has opened up the conversation about the category of neurotypicality and the largely unspoken criteria that support and reinforce the definition of what it means to be human, to be intelligent, to be of value to society. This has been especially necessary for those folks who continue to be excluded from education, social and economic life, who are regarded as less than human, whose modes of relation continue to be deeply misunderstood, and who are cast as burdens to society.

Nonetheless, I think it’s fair to say that this enhanced perceptual field is an aspect of much autistic experience and something neurotypicals could learn a lot from, not only with regard to perception itself, but also as concerns the complexity of experience.

What is needed are not more categories but more sensitivity to difference and a more acute attunement to qualities of experience.

Source: Histories of Violence: Neurodiversity and the Policing of the Norm – Los Angeles Review of Books

I updated “Autistic Burnout: The Cost of Masking and Passing” with selections from “Wasting Energy – Finally Knowing Me: An Autistic Life”.

Masking is exhausting. Utterly utterly draining. I’ve had people say to me many times over the years “But WHY are you so tired? What have you been doing?” and I’ve been unable to work it out. Even in my 20s I used to collapse with exhaustion on a regular basis. The brutal truth is that for an autistic person simply EXISTING in the world is knackering – never mind trying to hold down a job or have any sort of social life. And many of the standard recommendations for “improving mental health” (such as seeing more people in real life, spending less time on the internet, sitting still and being “calm”) simply make matters worse – solitude, rest, and stimming are much more useful tools. We need a LOT of downtime in order to recover from what, for most folk, are the ordinary things of life.

And this is at the core of the problem of masking. The perpetual acting, the perpetual stress levels on a par with what most folk would feel when at a job interview, the huge physical effort of sitting still and coping with sensory overload, and the conscious process of trying to work out how to interact with other human beings eventually takes its toll. In the short term it can lead to a meltdown (as it did with me in the supermarket the other day). In the long term it can destroy mental health and lead to autistic burnout.

Many autistics mask for years, putting in huge amounts of work to try to fit in to the world. Those of us who were diagnosed very late avoided some of the therapies that essentially force autistics to mask by using punishment when they exhibit autistic behaviours, although we were often taught to “behave properly” and the cane in the corner of the headmaster’s study was a constant threat throughout our childhoods. Some autistics become so good at masking that when they present for diagnosis they are turned away or misdiagnosed and when they tell people they are autistic they are met with disbelief and invalidation.

Source: Wasting Energy – Finally Knowing Me: An Autistic Life

I added selections from THINKING PERSON’S GUIDE TO AUTISM: Autism, Transmasculine Identity, and Invisibility to Neurodiversity and Gender Non-conformity, Dysphoria and Fluidity.

The intersection of being both autistic and transgender is more common than one might think. While the dialogue around autism and gender identity is expanding, I have a bit of trouble figuring out where I fit into the whole picture. So, I decided to do my own research, and while this subject is a fairly new field of study, I found some pretty astounding statistics:

In 2014, a U.S. study of 147 children (ages 6 to 18) diagnosed with ASD found that autistic participants were 7.59 times more likely to express gender variance than the comparison groups. Another study, conducted in the UK in 2015, involved 166 parents of teenagers with Gender Dysphoria (63% were assigned female-at-birth.) Based on parents’ report of their children on the Social Responsiveness Scale, the study found that 54% of the teenagers scored in the mild/moderate or severe clinical range for Autism.

The relationship has only begun to be explored in research in recent years, but I’ve come to realize that there are a lot of autistic trans people out there in the world. As someone who very much values human connection and simultaneously struggles with it, I have to say that looking at those figures provided me an amount of comfort. I discovered that there are a lot of people just like me.

Being autistic and being transgender certainly each has their own respective challenges, though one that they share is a lack of societal acceptance due to stigma. Many people still believe that who I am as a transmasculine person is inherently invalid, just like many other people still believe autism is some kind of tragedy that is to be cured. In contrast, I feel very strongly that who I am as a person is heavily dependent on both my trans and autistic identities, and that they are beautiful things.

Source: THINKING PERSON’S GUIDE TO AUTISM: Autism, Transmasculine Identity, and Invisibility

I updated “I’m Autistic. Here’s what I’d like you to know.” with selections from “An Autistic Burnout – The Autistic Advocate”.

If you saw someone going through Autistic Burnout would you be able to recognise it? Would you even know what it means? Would you know what it meant for yourself if you are an Autistic person? The sad truth is that so many Autistic people, children and adults, go through this with zero comprehension of what is happening to them and with zero support from their friends and families.

If you’re a parent reading this, I can confidently say that I bet that no Professional, from diagnosis, through any support services you’re lucky enough to have been given, will have mentioned Autistic Burnout or explained what it is. If you’re an Autistic person, nobody will have told you about it either, unless you’ve engaged with the Autistic community.

Autistic Burnout is an integral part of the life of an Autistic person that affects us pretty much from the moment we’re born to the day we die, yet nobody, apart from Autistic people really seem to know about it…

Source: An Autistic Burnout – The Autistic Advocate

I updated “The Double Empathy Problem: Developing Empathy and Reciprocity in Neurotypical Adults” with selections from “Too high a price: why I don’t do behaviour charts — Miss Night’s Marbles”.

How do you feel right now, as an employee? How do you feel about your boss, your colleagues, yourself? How do you feel about having to come back to the same place, the same people, the same chart, tomorrow? What are the chances you will turn things around tomorrow, or ever? What are the chances you will just figure out how to hang at “orange” and deal with the consequences and find ways to enjoy your 20 minute lunch with your orange friends? (I know you are smart enough to stay away from red, but orange is really not so bad, right…?)

If my boss were to hang a chart in the staff lounge, showing which teachers were doing an exceptional job each day, as well as those who were having exceptional-in-a-bad-way days, I would be furious. I would be raging about my privacy, my dignity, my right to be respected by my colleagues for the person I am, and to not be publicly labelled based on any given day. My personal growth is between me and my boss. It has no business being a public display. I don’t know any teacher who would disagree with this. My boss and I have private conversations, plans, and systems to foster my progress.

Source: Too high a price: why I don’t do behaviour charts — Miss Night’s Marbles

I updated “Autistic Burnout: The Cost of Coping and Passing” with a selection from “#TakeTheMaskOff – The Autistic Advocate”.

Research is starting to show that Masking is a direct lead-in to the very early Autistic average age of death, something Autistic people (inc. yours truly) have been shouting about for a very long time. You can read about this research in my article an Autistic Burnout.

Source: #TakeTheMaskOff – The Autistic Advocate

See also,

An Autistic Perspective – What is Autistic Masking? #TakeTheMaskOff – YouTube

#TakeTheMaskOff Live Launch with Do I Look Autistic Yet, Agony Autie and Neurodivergent Rebel – YouTube

Look around you right now. How much technology can you see in your house or office? Autistic people designed much of that, came up with the ideas for much of it. And got paid peanuts, probably, to use a phrase. Look at the famous art prints on your walls. Many by autistic artists. Listening to music? Some is by autistic musicians. Driving home in a vehicle, designed and built by autistic people, over a bridge designed by autistic engineers? You bet that bridge works. We built it.

Your infrastructure relies on autistic people, all day, every day. Society makes trillions out of autistic minds. Capable, determined, passionately focused, fair, honest minds of the sort that fill the professional practices across the country. Autistic lawyers, surveyors, bankers, accountants, doctors, scientists. Getting it right. Challenging nonsense. Stopping salespeople from selling ‘snakeoil’ to people.

Source: Ann’s Autism Blog: Let’s look at why “Autism is the most expensive disability” is untrue.

Society insists on making education, healthcare etc into a sensory hell, and we have to navigate it. Headphones, sunglasses, different clothing, etc can make a big difference. That’s really cheap to achieve for a lot of us, with a small budget from a provider. Hold that thought….that it’s really cheap to achieve for a lot of us ….because it is. If you know what you’re doing. If you ask the autistic person what helps, after having autism training from autistic people, so you know your subject.

Source: Ann’s Autism Blog: Let’s look at why “Autism is the most expensive disability” is untrue.

But, someone realised there was a way to say that there is Big Money in ‘fixing’ us so we’re not autistic any more. And Big Business likes Big Money.

So, the myths started. About cost, about danger, about tragedy. Who wouldn’t pay a fortune to fix a tragedy? Also, about disability. It’s a fault, a deficit, something’s gone ‘wrong’, you’ll be told. Except it isn’t, any more than being gay is a fault and a deficit and an opportunity to cure. Groups tried that, too. Remember that being gay was in the mental health books, and people made a fortune out of ‘gay cure therapies’. Now those are being banned after the gay people said how much damage those therapies did. Guess what some autism ‘therapies’ are based on? Same techniques. But now used on people who can’t say that it hurts, or aren’t believed when they say it hurts.

Meantime, we have made society so bad for autistic people and the scaremongering so effective that our quality of life is often really awful. That’s not ‘autism’ that did that.

Instead, if you must hand over money, ensure that actual autistic specialists receive it. Or our allies. People who understand how to actually help your child, because we were once pretty much the same as your child. And we have spent decades in this trade, learning things that help.

Autistic people are not lab rats who exist so that shareholders can make money.

Source: Ann’s Autism Blog: Let’s look at why “Autism is the most expensive disability” is untrue.