Saturday, 26 October 2019

Resource: blue pumpkins for Halloween



So, last year (2018) a few of us in the autistic community encountered the following image claiming that carrying a blue pumpkin for trick-or-treating signified that the person was autistic:


[Text reads: AWARENESS: Trick or Treat...the BLUE BUCKET...if you see someone who appears to be an adult dressed up to trick or treat this year carrying this blue bucket, they are probably autistic. While they may have the body of a 21 year old, they love getting dressed up for Halloween. So when you see the blue bucket share a piece of candy. Spread awareness! These precious people are not "too big" to trick or treat.]


It was not, in fact, anything like the trend or convention it is made out to be. It was ONE SINGULAR Martyr Parent. The shop from which the bucket was bought sold buckets of all different colours, not just blue. There was a Snopes article debunking its presentation as a widespread trend. I wrote my own rebuttal/explanation of why it was so harmful on the Autistic on Wheels Facebook page, which you can read here:

https://www.facebook.com/autisticonwheels/posts/2001751866586022

For those readers who don't use Facebook, this is what I wrote in 2018:

First of all, this is NOT a widespread thing; it appears to be one person's thing (Snopes is a pretty trustworthy source; see the link at the bottom of this post for their more detailed verdict on the post).
Secondly, blue-for-autism is specifically related to Autism $peaks, a US-based organisation pretty much universally regarded as an anti-autistic hate group by the #actuallyautistic community. The choice of blue has been unnecessarily gendered by Autism $peaks and sidelines/ignores/excludes female and nonbinary autistics (due to the reasons it was chosen).

Thirdly, and VERY importantly, this blue pumpkin bucket will confuse matters, potentially dangerously so, with the teal-pumpkins-for-food-allergies practice. In dim light, teal and blue are practically impossible to tell apart, putting children with food allergies at risk.

Then there's the massive visual target that marks someone out as potentially vulnerable (and many kids won't want their neurology broadcast to the world without their explicit permission). There are better ways to go about this - if you *have* to do something to let people know the child is autistic, something more discreet, like a badge, is much better, or a card the child can choose to show people if they wish to.

Guilt-tripping people and manipulating their emotions by playing the disability card is NOT COOL.

Finally, the language used: "the body of a 21-year-old" and "appears to be an adult". No, they ARE a 21-year-old and they ARE an adult. This is incredibly infantilising language and implies their body and brain are completely separate entities. Then there's the use of the word "precious". *shudders* Again, incredibly infantilising, condescending and patronising. No thanks.

Let's hope it doesn't catch on - although I'm sure the moment this comes to the attention of Autism $peaks they'll want to capitalise on it in order to raise funds for their toxic brand of autism "awareness" and their not-eugenics-honest-guv research.

Naturally, as I predicted, Autism $peaks was quick to jump on the bandwagon.



Once Halloween passed, it died down and many of us in the autistic community hoped (and prayed, for those of us who are of a religious persuasion) that it would swiftly be forgotten and disappear into the black hole of the internet.

Except it didn't. The opposite did.

In the last three weeks or so it has EXPLODED across the autism community. The Paaaaarent brigade is pushing it and spreading it as a good idea like the plague, countless news outlets (including reputable, wide-reaching ones like The Independent here in the UK, from whom quite frankly I expected better) are promoting it and the autistic community wants it to f*** off and DIE.

It's now EVERYWHERE. From the lone post and image above from 2018, there is now a plethora of posts of different blue buckets, all loudly proclaiming it to symbolise that the carrier is autistic. Well, usually that the carrier "has autism". And some of them are full of infantilising language like the original 2018 post, which is UNACCEPTABLE. If someone is 13, or 21, or 35 or whatever, just say that. If you absolutely have to disclose their age at all! DO NOT say they "have the body of a [fill in age]-year-old", and CERTAINLY DO NOT say that they have "the mind of a child" or any variant. It's patronising, condescending, infantilising and completely inappropriate.

2019 images are at the bottom, should you wish to peruse them.

Since this plague/virus/horror/blight on humankind* has exploded across social media, various autistics and allies have written posts reiterating WHY this is A REALLY BAD IDEA and why you SHOULD NOT DO IT. You can read them here:

*delete as appropriate


Facebook posts
Anna Rico 
Autistic, Typing
Autistic Union
Giraffe Party
Jyn Virago
Lori Jacobson Campbell
Quirky. Stimmy. Cool.
Radical Neurodivergence Speaking
The Autistic Avenger

Articles
A Diary of a Mom: Some Thoughts About Blue Pumpkins
Autistic and Cheerful: Supporting autistic kids at Halloween (brief mention)
Autistic Pride Reading: We don't need no Blue Pumpkins!
CTV: Autism Canada doesn't endorse 'singling out children' with blue Halloween buckets
Fierce Autie: The Blue Pumpkin and Why I will Never Get One for my Children
Grounded Parents: Today's Terrible Idea: Blue Pumpkins for Autism
Not An Autism Mom: 3 Reasons My Autistic Children Will NOT Carry a Blue Pumpkin for Halloween

Additionally, other fact-checking and myth-debunking websites have kicked into action to attempt to debunk this bollocks; you can read their articles here:

Debunking articles
FullFact: Blue trick or treating pumpkin buckets are not official symbols for the autistic community
Snopes: Does Carrying a Blue Halloween Bucket Signify That a Trick-or-Treater Has Autism?
That's Nonsense: Does using a blue bucket at Halloween indicate autism? Fact check 

It's worth noting that a lot of autistic-run Facebook pages are sharing these posts and articles because they, too, oppose the blue bucket, and adding their own comments on it.

One of the biggest concerns that I and many other autistic people have (as I mentioned in the original AoW post, above) is that in the dark or dim, multicoloured lighting, blue and teal pumpkins could be confused, which is Potentially Really Dangerous for people with allergies. I've already seen easily 100 people on a handful of Facebook posts getting confused about this, just in the last few days, and so have many other people I know. The Teal Pumpkin Project is A Real Thing, and one I and many other people wholeheartedly support. You can read about it here:

Teal Pumpkin Project website

It's a brilliant idea, and one that I really hope spreads further every year.

The other big, important concern is, as mentioned above, that if this becomes a mainstream, promoted thing, vulnerable people are being put at great risk, because these buckets are a huge target, having the potential to attract predators and bullies. Additionally, those people carrying blue buckets "because autism" are learning that their neurology/diagnosis is for the public domain and they do not have the same right to privacy or consent/withholding consent as NT and/or non-disabled people do. This is why this whole thing is An Incredibly Bad And Dangerous Idea.

And while on the subject of consent, what if the person doesn't want a blue bucket? What if they don't like blue? What if they would rather have pink, or red, or green, or any other colour because that's their favourite colour? If the autistic child wants a blue bucket because blue happens to be their favourite colour, that's fine, because that's their choice and it's not because it's parading their neurology for all the world to see without their consent. There are plenty of Martyr Parents that simply wouldn't care if the person doesn't want blue - clear evidence that it's all about the Parent, not the autistic person. I've seen a number of parents saying that they're getting their autistic child a blue bucket "because autism" and the child has no say over whether they even want a blue buclet.

Alternatives? Don't disclose. No autistic person owes you their diagnosis. If you really feel that there needs to be something to indicate that the person is autistic, opt for something more discreet, preferably something that the autistic person can choose to disclose or not. If you want something discreet, try for something like a card the person can show to people. Maybe a badge. But NO puzzle pieces, NO blue buckets. The autistic community widely rejects the association of blue with autism.

And for those people saying, "But the intentions are good!" so what? So. Bloody. What??? Impact is greater than intent, and there's that famous line of "The road to hell is paved with good intentions". It doesn't matter what your intentions are if the outcomes are harmful. And countless autistic people ARE saying that the outcomes are harmful.

Blue-for-autism means Autism $peaks, There is a plethora of articles available from many autistic people (and some allies) about why they are a really, REALLY bad organisation. That's not a post for now. If you want to know more, Google is your friend, go to autistic-run blogs and Facebook pages. The information is easy to find.

Listen
to
autistic
people.

DO NOT put people at risk. DO NOT support this harmful idea. DO speak out against it wherever possible.

2019 posts





Sunday, 14 July 2019

Resource: key articles on identity-first language

I've been meaning to write this for a while. Following a conversation just now (in a cat group on Facebook, of all places!) I thought it was about time I pulled together a comprehensive list of articles by autistic people about why identity-first language is overwhelmingly favoured by us (and person-first overwhelmingly - and often vehemently - rejected).

DO NOT try to minimise or trivialise this subject. DO NOT say, "There are more important things to discuss", or "This isn't important in the grand scheme of things", or anything like that. It may not matter much to you which language is used, but for many autistic people, it really does matter because of how language works and because of the impact of language. At some point I'll be writing something about the linguistic effect and significance of PFL and IFL (and differences between the two), but that hasn't come into even planning existence yet, so keep an eye out. When I do, I will update this list.

I am aiming to make this as thorough as possible, so it is quite likely that as I come across more articles, research, etc on this subject, I will be updating this list. If there are any you readers know of that I have not included, please do let me know and send them my way!

Note: if the article is from The Mighty, don't link it directly and instead try to find it on an alternative website; if you have to, use DoNotLink. The Mighty partners with Autism $peaks.

*****

Definitions

Person-first language (PFL): puts the person before the condition, separates the two.

Examples: "has autism", "a person with autism", a person living with autism" (I wrote a scathing comment on THAT one on this blog's Facebook page a few weeks ago, which you can read here: https://www.facebook.com/autisticonwheels/posts/2360697670691438), "a person experiencing autism"), "someone touched by autism". I have fibromyalgia and ME/CFS.

Identity-first language (IFL): incorporates the condition as an inextricable part of the person's identity.

Examples: "is autistic", "is Deaf".

*****

Articles on IFL

Listed alphabetically for ease. Mostly from autistic people, but also a few parents who listen to the autistic community and defer to our preferences.

Amy Sequenzia
Person First Language and Ableism
The Gymnastics of Person First Language

Autistinquisitor
Actually, I Do Let Autism Define Me: Identity-First Language

Autistic and Cheerful
Autism terminology: Identity or person first language
Actually, autism DOES define me

Autistic Zebra
No, I Will Not Call You a "Person with Autism"
Identity First Language 

Beth Wilson
Identity First Language

Dawn-Joy Leong
Identity First


Diary of a Mom (*NT parent of an autistic child)
Person First: An Evolution in Thinking (at TPGA)
I do not have neurotypicalism: where person-first language fails
Neurology as identity, not accessory

Emily Ladau
Why Person-First Language doesn't always put the person first

Gordon Darroch (Autistic Dad)

On Language


Identity-First Autistic
A Brief History of Identity-First Language

Illusion of Competence
Disability first: autism is not an accessory

Jean Winegardner
'Autistic' or 'Person With Autism'? (at TPGA)

Jeff Gitchel (Turtlemoon)
Autism First (Again)

Jim Sinclair
Why I dislike "person first" language

Julia Bascom
Dear "Autism Parents"

Kassiane A (Radical Neurodivergence Speaking)
I don't have autism. I am autistic.
Remember autistic & person aren't mutually exclusive! Language, again.
Classic Neurodivergence: The Cancer Comparison. AGAIN.

Katherine Lawrence (Autistic on Wheels; me)
30 Days of Autism Acceptance: day 15

Kaylene George (Autistic Mama)
3 Simple Reasons to Use Identity Language For Autistics
Yes I Will Say That My Son is Autistic, and Other Unpopular Autism Opinions

Kieran Rose (The Autistic Advocate)
An Autistic Identity (*VERY long; for specifics, scroll down to the heading titled "How we talk is how we think" in particular)

Lorcan Kenny, Caroline Hattersley et al (*researchers; neurology unknown)
Which terms should be used to describe autism? Perspectives from the UK autism community (*abstract/summary only unless you have institutional or paid access)

Lydia XZ Brown (Autistic Hoya)
The Significance of Semantics: Person-First Language: Why It Matters
Identity and Hypocrisy: A Second Argument Against Person-First Language
"People First - Create an Environment of Respect"
My Dog Isn't Named Autism 

Maxfield Sparrow (Unstrange Mind)
Labels are Valuable Tools

Michelle Swan (Hello Michelle Swan)
The language of identity, or "I am not an autism parent"
Why do you say "autistic" instead of "person with autism"?
Autism does define me

Musings of an Aspie
The Logical Fallacy of Person First Language

Patrick Dwyer (Autistic Scholar)
Identity-First Language

Reaca Pearl (*NT parent and wife of autistics)
5 Reasons Why I Use Identity-First Language For My Autistic Daughter

Robin Eames
Identity first language: a note on language 

Ryan Boren
Identity First

Speaking of Autism
How Person-First Language can be Dehumanizing 

Wibbly Wobbly, Neuro-UNlogical Stuff
Person First vs. Identity First Language

Yenn Purkis
"It's my 'me'!" Identity, language and autism

Yo Samdy Sam
Person with autism or autistic person?  My problem with “person-first language” for autism

*****

Articles on IFL not specific to autism:

Brittany Wong
It's Perfectly OK To Call A Disabled Person 'Disabled', And Here's Why

Cara Liebowitz
I Am Disabled: On Identity-First Versus People-First Language

CL Lynch
Confused about person-first language?

Monday, 8 July 2019

Asperger's: should it stay or should it go?

Just now a question was posed on a local autism (autistic-run) Facebook page that I follow. The person writing it asked what people thought about the "loss" (ie. removal) of Asperger's as a separate diagnosis.
(Quick note: in the US and other places that use the DSM-V diagnosticians no longer give it because it does not exist as a separate diagnosis in that book, it is all "autism spectrum disorder/condition"; here in the UK and other parts of the world we use the ICD-10, which includes Asperger's and is the criteria with which I was diagnosed, but the ICD-11, when it eventually comes out in January 2022, will follow the DSM-V with no separate Asperger's category.)

The page added the hashtag #keepAspergers.

This is the comment I made:

*****
My formal diagnosis is Asperger's. Quite frankly, I'm happy to see it go, resigned to the history books.

  1. Asperger's as a separate diagnosis causes confusion - that separation from "autism" makes people think that that means it isn't autism, or isn't "real" autism.
  2. Following on from 1, some people/systems use it to deny supports because it is generally associated with not needing as many supports as those with a diagnosis of "classic autism". People go, "Oh, it's only Asperger's so they'll be fine, they don't need support/accomodations, they're just being difficult" (I've had more or less exactly that said to me, as have a number of my friends with an Asperger's diagnosis).
  3. It's an arbitrary, unnecessary division - the only real difference between an "Asperger's" diagnosis and an "autism" diagnosis is whether the person reached developmental milestones earlier than/in line with the average or whether they reached them later than the average. By the time someone reaches adulthood, does it really matter what age they were when they reached those milestones, if they reach them?
  4. It gets used as a functioning label, an alternative to "high functioning autism" (and functioning labels are divisive, restrictive and extremely harmful, and need to be resigned to the history books).
  5. The "Aspie supremacists" hang onto it in their desperate, misguided effort to feel superior to neurotypicals (often evident in such statements as "the next step in human evolution", etc) and those with a "classic autism" diagnosis who require more support, whom the Aspie supremacists regard as inferior and from whom the supremacists wish to distance themselves. A lot of these people support eugenics and believe that autistics with high support needs should be prevented from existing.
  6. Hans Asperger was an actual Nazi who was actively complicit in eugenics, sending autistics deemed "useless eaters" etc to the death camps. Quite frankly, no way in hell do I want to be associated with that.

These days I simply say "I'm autistic" and it does me perfectly well.

*****

Since I posted my comment (which is what I have written in this post), the page's post seems to have disappeared. Maybe it's a Facebook glitch or but I suspect they didn't like my response so took the post down (mine was the only comment) because there is no record of me commenting in my Fb activity log (which generally indicates that a post has been removed). Knew I should have taken screenshots...



Maybe I'm being cynical and there are other reasons. We shall see.
I could write an entire essay on the subject (and I'm sure I will at some point!), but this was a quick five-minute effort and I'd like to post it. Short but sweet, and all that.

I'll be blunt - that's a cowardly move if it was because of my comment, and if so,I am deeply unimpressed with their actions. I have also since discovered that this page seems to support functioning labels. NOT a fan.

Monday, 4 March 2019

Autism, driving and the DVLA

DVLA: Driver and Vehicle Licencing Agency
UK government department that deals with registration of vehicles and the managing of driving licences.

There's been a sudden explosion of conversation in the UK autistic community over the last few days regarding what seems to be a very recent revision (with no announcement) by the DVLA regarding the disclosure of an autistic neurology to them.

Previously, a person only needed to disclose to the DVLA that they were autistic if it had an effect/impact on their driving.

As of last month that seems to have changed to it being compulsory to declare. But people have still not been 100% certain about this because there appears to be some contradictions on the DVLA website. Ann Memmot posted the other day about this subject, which you can read here: Driving Whilst Autistic - The Evidence

 The DVLA website in the last recently (nobody is quite sure precisely when) removed the section about only needing to notify them if your autism affects your driving:



The Motability (organisation that leases cars, and powered scooters and wheelchairs to disabled people) website only gives advice, dated May 2017, for those who do not currently hold a licence and are considering applying for one (there is nothing about those of us who held a full licence prior to receiving an autism diagnosis):



The National Autistic Society (NAS) has also attempted to seek clarification on whether disclosure is compulsory or only under certain circumstances. Last week they were under the impression that disclosure is only required if aspects of a person's autism adversely impacts on their driving ability.

The National Police Autism Association last week were also under the impression that it was only necessary to disclose your neurology if it affected your driving:


As of the morning of today (4th March 2019), the NAS has confirmed that we HAVE to disclose our neurology:
DVLA and changes to the rules for autistic drivers (4 March 2019) 



People have emailed them and received a response stating that you MUST disclose if you have an autism diagnosis (screenshot shared from a group with the person's permission):


This new change from the DVLA means that failure to disclose can have a detrimental effect on the validity of your insurance, especially if you are involved in a traffic incident, and will lead to a fine of up to £1,000 and/or prosecution. The NAS, Ann and several others are currently in the process of seeking legal advice on this so this is a live, ongoing situation, and I will be updating as this process continues.

It's ridiculous. If an autistic person is not safe to drive, they don't pass the driving test. If they have medical issues such as epilepsy, that's a different matter, and there are very clear and specific rules about those. But autism alone? It should come down to their actual ability to drive, which is assessed constantly by driving instructors (who advise whether or not someone is ready and able to take their test) and then on whether they pass or fail the driving test. It's almost like THAT'S WHAT THE TEST IS THERE FOR.

These two items sum this up rather nicely:



Competence, awareness, co-ordination, etc are all assessed in the current driving test, so if someone does not demonstrate a high enough standard of these, autistic OR NT, they would not pass the test.

This feels like a witch-hunt against the autistic population. There was no official announcement about it. No widespread notifying of the general population - which means a limited chance of anyone finding out about it had it not been for some eagle-eyed people who happened to be looking in the right place at the right time, and were able to spread the word.

I have already seen several people say that with this change in wording, they are planning to withdraw from being assessed for autism for fear that they may have their driving licence suspended/revoked. THAT is the reality of this. This screenshot has been shared with the permission of the blue commenter (I am the claret one):


And what about those who have been driving for years, especially with a 100% clean licence and no insurance claims that have anything to do with their driving ability? (For the latter, I'm thinking of things like the time I had to talk to Motability's insurance branch after some inconsiderate person failed to park properly in Plymouth, leaving a scrape down the side of my car and the tail reflector smashed in - my car was properly parked and I was a good mile or so away at the time, absolutely nothing to do with me.) I passed my test when I was 18, according to the criteria at the time. I have never had so much as a parking ticket; I'm one of the safest drivers on the road. The same can be said for many other autistic folk.

Around 5.30/6pm today the NAS reported that the DVLA website has reverted to its previous wording:



The DVLA's Twitter account clarified the rules earlier as well:



So for clarification, for the moment we only need to notify them IF our autism affects our driving, as was the case previously. How long this will last, I have no idea. But the current (as of 9pm March 4th 2019) we only have to notify the DVLA if our autism affects our ability to drive.

A massive, MASSIVE thank-you to everyone who put in the work over the last few days to get this clarified and sorted. You are all amazing and I am extremely grateful for all your efforts.

This is not over yet. There is a panel discussion on March 20th regarding this matter.But in the meantime, hold off on sending in your M1 form unless your autism does affect your driving.

Watch this space.

Sunday, 17 February 2019

On-stage dehumanisation of autistic people: All In A Row and #puppetgate



"[I]t seems that the company was advised by the National Autistic Society against aspects of the production and decided to go ahead with them anyway."

"In a discussion with the BBC, Alex Oates responded to this criticism by saying 'people are making the point that we’re dehumanizing him…and, you know, in a way we are. But that wasn’t the primary reason we chose the puppet.'"

You can read Shaun May's (excellent) full review here: https://shaunmay.co.uk/allinarow/

I am not in a position to attend the play to write my own review of it; however, this man, a senior lecturer in drama and theatre, has, and this is his thorough review of it. I'm not sure if he's autistic or not (although some of the things he says in the review suggests that he is).

I am utterly appalled and disgusted at Oates' attitude, as are many, many other autistics. He ignores advice and guidance from the NAS (they are not without problems themselves, but in this case they absolutely got it right) and has the audacity to openly admit to dehumanising us. At least he admits to this callous action, which means it is undeniable and thus he cannot attempt to backtrack and claim he didn't. But the fact that he says it "wasn't the primary reason" implies that it was a reason, which suggests that, consciously or subconsciously, Oates does not see autistic people as human. And that is horrific.

The play's Facebook page has been deleting any and every comment expressing any objections to the puppet use, which makes it abundantly clear that our voices are explicitly unwelcome and that All In A Row has no interest in representing us fairly or accurately.

Yet again autistic perspectives are silenced.

In some articles they have claimed that the reason they opted to use a puppet rather than an actor is a combination of child-labour laws here in Britain and that the subject material would be too difficult for a child actor to handle, the emotional impact too difficult. That seems like a cop-out, an excuse, an attempt to pacify the autistic community, because if that was really the primary concern, there is a simple way around it - use a young adult actor fresh out of drama school. It would be far from the first play to do so: I present to you Harry Potter and the Cursed Child. In that, we initially meet the two protagonists (Albus Potter and Scorpius Malfoy) at the age of 11, with the main action occurring at the start of their fourth year, when they are 14. They use adult actors for these roles, and because they have fantastic actors in the roles, it works brilliantly and there is no issue with suspension of disbelief (I've seen it twice, with two different casts, and never once did I find myself thinking, "They're too old", same for everyone else I know who has seen it). I even said so on a post on the Southwark Playhouse post where they try to fob us off claiming "child protection", and on AIAR's page underneath the Southwark Playhouse post; I took screenshots because All in a Row has been very vigilant about deleting each and every comment criticising their decisions and dehumanisation of us.



So All in a Row has NO EXCUSE.

[For those using screenreaders, my comment is: "If you're so concerned about issues of child protection, there's a simple solution: use a young adult actor fresh out of drama school. Harry Potter and the Cursed Child manages this fantastically well, as have other plays, so why not go down this route instead of using a creepy puppet that reinforces the dehumanisation of us autistic folk that is still so pervasive in society?

And then there's this highly problematic cover/publicity image they use:



3 yellow French Fancy cakes neatly lined up, with one blue one (for the record, French Fancies do NOT come in blue; they come in yellow (lemon), brown (chocolate) and pink (plain)) upended and out of line in front of the yellow cakes. This blue one (Autism $peaks blue, no less!) is clearly meant to represent Laurence, the autistic child character, which sends up all kinds of red flags because of the connotations blue carries when it comes to autism (ie. Autism $peaks).

Symbols are hugely important in theatre (and fiction generally), so this cannot be an accident - so if they are using blue to represent autism, either they are unaware of this link (which shows a worrying lack of research) or they do not care that the autistic community on the whole rejects blue being used to represent autism. Given their actions mentioned above regarding dismissing the NAS's recommendations and the persistent deleting of all comments expressing objections, I'm inclined to go with the latter.

Using a puppet is another symbol: in this case a symbol of dehumanisation and absence of agency. The puppet in use is, quite frankly, creepy as hell. The face is grey (and grey is often associated with blandness, dullness, apathy and other such things - hardly anything to elicit positive feelings about it) and the expression does not change, suggesting passivity, and absence of emotions, thoughts and feelings (all accusations thrown at us in the past). It feeds into the false "blank slate" concept that Lovaas (the founder of ABA) so loved to espouse, reinforcing this concept that we are not people inthe same way that NTs are. Even more so because slate is grey. Additionally, the puppet has to be operated by another person, reinforcing the notion that autistic people do not have agency, that they need to have their every move prompted by another (implicit: NT) person. Finally, it perpetuates the false idea that autism is a shell, an idea so often used by those pushing the tragedy narrative (ie. that there is a "normal" NT child "trapped" inside the "shell" of autism). In short, it creates the idea that autistic people are not fully human, do not have agency, thoughts or emotions, and are just a shell operated by another.

This is a play that could have had great potential, that could have done so much good. But instead, like so many works of fiction written by NTs that feature autistic characters, it perpetuates the tragedy narrative of autism and literally completely dehumanises us. And on top of that, it was highly inaccessible to autistic people, which makes this even worse than it already was.

It is clear that Alex Oates (and by extension director Dominic Shaw and Southwark Playhouse) have no interest whatsoever in listening to autistic people or accurately representing us. Their persistent disregard of autistic voices has become wilful ignorance and active silencing.


#puppetgate

My academic background: BA(Hons) English Literature (2:1), MA Creative Writing (Merit) from Exeter.

Sunday, 30 December 2018

Beware a harmful image (dissection included)

This post on a Facebook page for a local (not to me; further up-country) "Special Educational Needs" organisation popped up in my newsfeed this morning, in an autistics-and-allies Fb group I'm in. I don't know who originally created it because one of my friends encountered it today on Pinterest as well.

So consider this an open letter to the person who originally created this horrific, self-martyring, pity-party drivel. This is cruel, gaslighting, fearmongering, emotionally-abusive hate. If you are the creator, I hope you read what I and so many other autistic people are saying about it, and understand how harmful it is, and do better in future.

EVERYTHING about this is WRONG and here's why. The numbers below correspond to the numbers on the image above. As of about 5pm it's been removed from the page on which I saw it and a subsequent apology issued, with an assurance that it will not happen again. I certainly hope so! The autistic community will be watching closely.

I don't know what the original creator's intent or point was, but if it was to highlight any kind of systematic problem with support and service provision, it has utterly failed. This image is all about the appalling self-martyrdom I see among so many parents of autistic children, who make their child's struggles about how hard it is for them as parents, completely overlooking and ignoring how hard things are for the child. It exploits our struggles for the parent's desire for attention and ego-stroking. That is something that Needs. To. STOP.

It was good to see so many people (autistics and allies) pointing out how cruel, abusive and harmful the post was.

  1. The self-centred "Autism Parent" title that seems to be becoming more and more widespread. No. STOP IT. You don't parent autism, you parent an autistic child. You don't get to appropriate OUR neurology for YOUR identity, especially when you scream at us for using identity-first language for ourselves, when you use IFL for yourselves but deny us the right to do the same. That's something I'll be talking about in a future post because it warrants an entire article to itself.
  2. The accusatory tone that suggests it is our fault that the parent has to fight, that it is somehow our fault or choice that we need additional supports, rather than the fault of a fearful, ill-informed tragedy-and-burden-narrative-pushing society (of which certain organisations play a highly influential role in perpetuating) and a broken, resource-limited system that doesn't understand our needs or want to help us, along with an implicit, "You'd better be damn sure you repeatedly express your undying gratitude".
  3. The parent being blamed for the child being autistic - yes, it is horrible and unacceptable that that happens (and it does, frequently - it's a guilt-trip that the antivaxxers and the woo- and pseudoscience-pushing false-cure peddlers love to use, and a mentality that was commonplace in the past among clinicians, such as the false theory of the "refrigerator mother"), but the structure of this and the lack of clarification sends the message that it is our fault that the parent was blamed for it; this expression of frustration needs to be directed elsewhere, to those who told the parent that it was their fault. The current layout of the page clearly shows it being directed towards the autistic (expanded on below), which needs to be changed.
  4. Blaming the parent for autistic behaviours and being perceived as a bad parent, much the same as point 3, needs to be directed to a more appropriate figure, such as an ill-informed society.

  5. Learning how to fight lawyers in order for suitable education to be provided is also said in a very accusatory manner, as though it is the fault of the autistic person for having additional needs. Yes, it is incredibly tough on a parent to have to fight for their child's right to education and they should not have to; however, again it is the layout that is the problem here and the tone. This, like points 2, 3 and 4, need to be directed to appropriate targets  (those in positions of power who make the criteria, funding decisions, etc), not blaming the autistic person in the way that this image implies.
  6. Declaring themselves as more knowledgeable about autism than any other NT is incredibly arrogant and disingenuousto those NTs who work with a wide range of autistic people and other parents, and this arrogance frequently comes across when Paaaaaarents (by which I mean a particular subset, among the Martyr brigade) when they try to silence autistic voices and their allies.
  7. The 80%-divorce-rate statistic is utter bollocks and has been repeatedly debunked - and not even recently! This is a bogus figure put out by Autism $peaks (I know, I know, no surprises there) purely for fearmongering purposes: Relationship status among parents of children with autism spectrum disorders: a population-based study and Autism Families: High Divorce Rate is a Myth
  8. Losing friends because of "caring duties" is called BEING A PARENT, regardless of the child's neurology, and to be quite frank, if the friends can't understand this and aren't willing to accept your child's needs, or understand autism, they're probably not people you want in your life anyway. And again, the layout of this image directs the blame towards the autistic person. You DO NOT get to blame us for the behaviour of other adults. Our neurology is not the cause of other adults' douchebaggery and lack of consideration.
  9. The loss of a job because of "caring duties" - again, a lot of this is called BEING A PARENT and many parents find themselves leaving a job because of childcare commitments/the cost of childcare. This is not unique to parents of autistic children. You aren't a superhero just for doing what you signed up to do when you decided to have a child. And the use of the word "duties" makes it out to be a chore and leaves an unpleasant taste in the mouth. Further, if society ensured the right support, the loss of a job would not be as big a problem as it currently is - again, not the fault of the autistic person.
  10. Mental-illness rates being higher among parents of autistic children may be true, but yet again this is presented as being the autistic person's fault. This needs to be directed towards those limiting support services and those perpetuating the burden/tragedy narrative of autism that spreads the fear that is so prevalent around our neurology. One of the biggest problems facing the autistic community is the dominant narrative that autism is some sort of death sentence to everyone's lives, that we are a burden, a drain on resources and society, that an autism diagnosis is life-destroying. It is NOT OUR FAULT that the institutional structures, financial decision-makers and society at large are failing parents. You DO NOT get to blame us for that. Blame groups like Autism $peaks and others who talk about us as some kind of disaster. When society creates that much fear around it, it's going to have a knock-on effect on those dealing with it. Tear down the barriers, the misinformation, the fearmongering, the systematic anti-autistic narrative, and things will be infinitely better.
  11. Declaring that parents sacrifice so much is an incredibly heavy (and wholly unfair) burden to place on us, and is very much misplaced. I see this refrain constantly from the Martyr Parent ranks. What do you want, some kind of jewelled golden crown being brought to you by a host of angels, just for BEING A PARENT and doing what all good parents do as par for the course??? Every parent, regardless of their child's neurology, makes some sort of sacrifice; your child being autistic doesn't make you any different or more special than those with NT children. And before you say, "But autistic children are harder to parent and require more work!", STOP. Think about the impact of that, the message it sends. Also, it's not true. My mother will happily tell you that I was far easier to parent than many of the NT kids she taught (or attempted to teach) over the years. I have seen quite a few parents who have kids with both neurologies say that their autistic child is actually far easier and less work than their NT child.

    Additionally, they don't "know more about autism...than you can possibly imagine". I'm pretty sure those of us who ARE AUTISTIC, who LIVE autism with every sub-atomic particle of our being, know at least as much as these parents, and certainly more about the direct experience, because however much of an expert in autism an NT might be, it is all from an external, detached position. They do not know it in the same way that we do. I'm pretty sure that we know at least as much as you.
  12. Claiming that nobody helps is an oft-uttered refrain from the Martyr Parent brigade even when there is help. Generally what they mean, when you dig a bit deeper and unearth the real meaning, is, "Nobody can make my child NT". Yes, some do struggle and in a lot of places there are limits on supports and services, and some people don't really get any support, but this is far too much of an over-generalisation, and I have seen many Paaaaaaaaaarents dismiss the offers of help when it's not the kind they want (even when it's better, such as recommending OT in place of the abuse that is ABA). If I had a pound for every time a Martyr Parent dismissed autistic input and then persisted in claiming nobody will help, even when the autistic people have been doing so, or when family members and friends have offered to help but not in the way the Paaaaaarent demands, I really wouldn't be worrying about how I'd be able to pay my bills each month.
  13. The young man is clearly meant to be a caricature of us autistic adults who call out the Martyr Parents, presenting us as ungrateful brats who don't understand or appreciate how difficult we are on them and who are directing our frustrations in the wrong directions. It is an active attempt to silence those autistics who are trying to look out for the current generation of autistic children, to make things better for them and to stop them being put through the things we were forced to endure. It is an attempt to guilt-trip and manipulate us into staying quiet because then the parents don't have to confront the fact that they may possibly have been getting it wrong.
The layout, with the parent character facing towards the autistic-adult character, with no other character, sends a very clear visual message that the parent is directing their accusations at the autistic, which is completely inappropriate. There are no other figures in the image to which these statements could and should be directed, and so, consciously or unconsciously, that is the message being sent. That it is all the fault of the autistic person for being autistic, that we are a burden and too difficult, and ruin parents' lives. No. You don't get to do that to us. You don't get to gaslight us.

Layout and design matter. They communicate with the viewer.

This image is abusive, gaslighting, cruel, harmful and dangerous. It perpetuates the othering narrative of autistic people as a burden, people to be feared, hated and cast out, and as ungrateful brats who don't know what's good for us.

It is victim-blaming and that is NOT OK. It is NOT ACCEPTABLE to blame an autistic person for the difficulties they face and it is NOT ACCEPTABLE to make the autistic person out as the villain when the fault lies with a lack of support and service provision, with those restricting finances to fund those resources. You need to place the responsibility of shortfall with them.

You know who the parent character here reminds me of? Vernon and Petunia Dursley in the Harry Potter books. At some point I will likely edit this post with some direct quotes but not right now. I know that I am very lucky to have not had parents blame me for simply being autistic and for being a burden on them or making their life oh-so-hard, or tell me how grateful I should be because of everything they've ever done for me and I should be on my knees in overwhelming thanks just for being given the basic necessities of life, but I have encountered a disturbing number of autistics for whom this is their experience. It's horrific, and has left them with serious long-term mental-health problems. THAT is why things like this are so dangerous and cause so much harm. THAT is why autistics continue to speak out against things like this.

There are far, FAR better ways to talk about us and the struggles that can ensue from systemic shortfalls and damaging societal narratives than this self-serving, guilt-tripping drivel.

Finally, regarding the statistics given for the friend/job loss and mental-illness comments (we've already established that the divorce figure is utter rubbish), from where are these figures sourced? If you're including specific numbers, you need to give the source. Anyone can write a number and claim it's a statistic, but it's meaningless if they're just made up, and actively dangerous if they're being used to perpetuate fear and harm. What are you going to do with those figures, creator of this post? Stick them on the side of a big red bus and drive it around the country claiming it as fact?

Tuesday, 4 September 2018

"Atypical": summary outline

I know it's been an entire year since the Netflix 8-episode show "Atypical" first appeared. I watched it soon after it launched and made copious notes, but it's such an utter sh*tstorm of absolute horror that I haven't quite been able to bring myself to write it. But as season 2 is being launched, I should probably get on with it.

Expect 8 more posts on this in the near future, one post per episode (because there's so much to say that condensing it all into one entry just isn't practical). In the meantime, here's a summary of it. All of the aspects I refer to below in this post will be discussed in further detail in episode-specific entries.

*****

Loathed, hated, DESPISED it. Autism $peaks had substantial input, which tells you a lot.

I felt my heart sink when it turned out to be YET ANOTHER heterosexual, cisgender, white, ablebodied, socioeconomically-well-off male. I swear writers can't seem
to be able to deviate from this list and it frustrates the hell out of me. There's a massive underrepresentation of those that don't fit that paper-thin stereotype and that needs to change.

As others have said, it was more about perpetuating the NT tragedy/burden narrative of how difficult we are, how detrimental we are to families and how much it was about the mother (and her affair wasn't so much implying that it's because of The Autizms as straight-up smacking the audience in the face with it and hammering it into us, going, "HAVE YOU GOT THE MESSAGE YET? HAVE YOU? HAVE YOU???"). She was a stereotypical Autism Mom™ and it was incredibly painful to watch.

It felt like we were meant to laugh AT Sam, not with him, because of his terrible social faux-pas, like the autism is the butt of the joke. It's exploiting neurological difference for a cheap laugh. A case of, "Oh ha ha, look at the weird autistic kid messing up again, isn't that funny".

The emotional abuse of Sam is appalling, particularly with Paige's card system where he's only allowed to talk about his passionate interest 3 times a day - yet she's allowed to blather on about whatever vapid, inane thing she likes as much as she likes with no limits. That's not an equal relationship, that's a massive power imbalance and that is NOT OK for any type of romantic partnership. She's manipulative and controlling; that's dangerous. It worries me that young autistic teenagers will watch this and think that such abuse is acceptable in relationships if it means they actually get to have a relationship, and thus won't recognise abusive relationships if they happen to them. Couldn't stand her. It's classic ABA techniques, reinforcing the notion that the autistic way of being is somehow wrong and needs "fixing", and that the NT way should be worked towards and strived for. Enforcing compliance and submission, complete power imbalance - which is dangerous in a romantic relationship. This is emotional and mental abuse in action, deviously disguised as love.

Paige reminds me of those inspiration-porn kids that circulate social media around prom time, of the "kindhearted" NT able-bodied kid "graciously" inviting the disabled classmate to prom because it makes them look good. It becomes all about the deed-doer, and the disabled person is marginalised and silenced in their own story. Not OK.

It sends horrific, dangerous messages about consent (not so just sexual, but all aspects of life, such as the mother barging into her kids' rooms without permission even though she knows damn well she's meant to knock first). Boundaries are ignored and crushed.

The persistent, pervasive, horrific levels of misogyny and sexual objectification of the female body was appalling. And then we wonder why there's such a problem with toxic masculinity in our society?!?!?!

Then there's Julia, the therapist. If she's supposedly such an expert in autism, how the hell is she still so clueless?! She seems to be completely unable to interact with Sam or understand his perspective.

Overall, the quality of the writing was really poor (I say this as someone with a Creative Writing MA). There was a terrible lack of continuity - suddenly in about episode 6 Sam has a thing about how there can't be more than 3 rules for any one thing; where did that come from??? It wasn't there in earlier episodes and is completely contradictory. Also, Sam comes across far more as a DSM checklist of indicators than a real person - it was like they were sitting there saying, "Got that one, got that one, got that one - oooh quick, haven't got that one, let's slap it in halfway through and hope that nobody picks up on the contradiction".

There were a few not-completely-horrific parts, such as showing the buildup to a meltdown and how it's experienced, but that was one of the very, VERY few positives.


*****

For something calling itself "Atypical", it's actually the opposite. It's a very "typical" portrayal of autism, some might even say "stereotypical". It isn't atypical in any way, shape or form.

I won't be watching season 2.