Sunday, 16 August 2020

Cinderella, Prince Charming and prosopagnosia

 
 

Why doesn't the prince in Cinderella simply go round all the homes in the area and look at the women's faces to identify the owner of the lost glass slipper? After all, he's danced with her all evening and he's fallen head-over-heels in love with her, so it should be easy, right? 

Actually, not necessarily.

There's a condition called prosopagnosia - in lay terms, "face blindness" (and it's relevant here because it's something a proportion of autistics have; I myself don't as far as I know, as I'm generally pretty good at recognising faces, although I do have what I call "context blindness", where I don't recognise someone I know if they're in a setting/context I'm not expecting to see them in). There's also the fact that people can be difficult to recognise if their appearance has radically changed.

It won't have had that technical label at the time Cinderella as a story was created, but I'm sure that as a concept it will have existed.

Theory: the prince in Cinderella had prosopagnosia. And that is why he had to go round every single home with the slipper - because his brain simply could not identify and recognise faces. He needed an alternative cue, which in this case is the unique, slipper, magically-tailored to only fit Cinderella's foot, in order to identify the woman he's fallen in love with.

Maybe someone else has already put this theory out there online (if they have, I've never come across it). I've just seen a couple of memes mocking the prince, and come across several articles about unanswered questions and ridiculous things in fairy tales/Disney films, in this particular case saying how implausible it is that he doesn't recognise her. And then this theory occurred to me.

 Edit: I can't find the original meme (either it's been deleted or the original poster has changed their privacy settings) but here's another one:

 

Some resources on prosopagnosia:

Centre for Face Processing Disorders (Bournemouth University)

Face-Blind: Why are some of us terrible at recognizing faces? By Oliver Sacks 

Looking beyond the face area: lesion network mapping of prosopagnosia

NHS: Prosopagnosia (face blindness)

Oliver Sacks describes his struggle with face blindness 

Prosopagnosia Research Center

Prosopagnosia: The artist in search of her face 

Prosopagnosia: What it's like to live with 'face blindness' 

Striking a Path into Neurotypical Space – Yenn Purkis

Friday, 24 July 2020

Open letter to The Telegraph


In reference/response to the following article:

Face masks in shops: rules on compulsory coverings, fines and who is exempt from wearing one 


This appeared in The Telegraph, a UK newspaper, on 23/07/2020.

(I don't actively seek out this publication to read, as their politics and worldview contrast greatly from mine; it came to my attention as a news article via the Upday news app that my phone came with, so I read it to see what they said about autism-related exemptions.)

**********

Here is what I wrote to them:


I am autistic. This is highly relevant to the article content.

The article, when detailing those who are exempt from wearing face masks, uses the phrase "Those who suffer from autism". We suffer from the impact of a world that does not (and frequently will not) accommodate our differences. We suffer from systemic, societal ableism and discrimination as a result of having a neurology that deviates from the majority of the population. We suffer from co-occurring conditions (particularly mental illness) brought about from trauma, bullying, ableism and discrimination due to being different from the majority. We suffer from low self-esteem and a sense of being "broken" and "defective" as a result of constantly reading things like this statement, phrases that reinforce the (false) notion that we are lesser, inferior, wrong, a world telling us we are inherently defective and that our way of being is unacceptable.

We DO NOT "suffer from" autism itself.

This is a highly offensive phrase.

This type of language is deeply hurtful and harmful. It is outdated, inaccurate and ignorant, clearly written by those who have no real knowledge or understanding of autism or what it means to be autistic. Autism is not a disease; it is a perfectly natural variant in human neurology that means we process and interact with the world differently from the neurotypical majority.

This phrase being used in such a prominent, wide-reaching publication such as The Telegraph causes significant harm to autistic people, and normalises and renders acceptable to the wider public such pathologising language. It perpetuates the notion that autism is something terrible. It perpetuates fear and misunderstanding. It enables the flourishing of false, sometimes dangerous "treatments" such as MMS and the Nemechek Protocol. It promotes (often insidiously) the notion that eugenics is acceptable when it comes to autism. It is complicit in the filicide of disabled children by their caregivers as something understandable and makes it acceptable in the public mindset to sympathise with the caregiver. It contributes to poor self-image among autistic people.

The correct phrasing should be "autistic people".

**********

 24/07/2020 - They have replied to me. Apparently it doesn't breach the Editors' Code so it cannot be considered a "complaint", so it's been passed on to the editorial team. I just replied in an effort to educate them on suitable language and hopefully obtain some sort of promise or guarantee that they will never again use such atrocious wording. I have also said that I am happy to continue the conversation regarding appropriate language in relation to autism.


If you want to add your own voice to pointing out the inappropriate wording, either use their Contact form https://www.telegraph.co.uk/customer/contact-us or, if you are unsure which option to select from the drop-down menu, there is the general email address at the bottom of the Contact Us page.

Sunday, 26 April 2020

Response to Autism Speaks' "Steps For Kindness"


On April 25th 2020, Autism $peaks held a virtual/individual alternative to their usual "Autism Walks", due to the current coronavirus Covid-19 situation. You can find it here: https://www.facebook.com/autismspeaks/videos/666979750790422
Word about the event, as so often happens, swiftly got around the autistic community. Autistic people flocked to the live-stream video to speak.

Here's my contribution. To my knowledge, as of 5pm 26th April, it is still there (although it's hard to find now, due to the 4,400 or so other comments, many of which are from other autistic people speaking out against Autism $peaks and the hypocrisy of this event, which is fantastic to see; A$ has been deleting comments left by some autistic people, but there is such a huge quantity that many are still there and visible, which is brilliant).

*****

Kindness? From your organisation? The hypocrisy and doublespeak is so intense that I'm not sure whether to laugh or cry. Why? Because kindness is the LAST thing you as an organisation has ever shown autistic people.

You want kindness, Autism Speaks? I have a few suggestions (not in order of importance, just the order in which I think of them) - and for the record, I am autistic:

1) Stop constantly and persistently silencing #actuallyautistic people (that includes deleting any comments that you don't like) - start LISTENING to autistic people; you say "It's time to listen" but it's perfectly apparent that that does not include listening to autistic people

2) Stop constantly and persistently ignoring #actuallyautistic people - start taking on board what we say and actually do something productive and constructive (such as what we suggest)

3) Stop using and promoting ABA, which is a harmful intervention that causes PTSD in autistic people (I recommend you start with Henny Kupferstein's research on the matter), an "intervention" with the same principles and practices as gay conversion therapy (Lovaas is responsible for both, in case you were unaware)

4) Stop treating us like tragedies and burdens (I Am Autism and Autism Every Day make it perfectly clear what you think of us), and that includes continuing to uphold parents as warriors and superheroes and so on just for BEING PARENTS (it's literally their job description, they chose to have children) because that sustains and reinforces the notion that parenting autistic people is so much harder and that it's basically a nightmare

5) Stop using the puzzle piece for autism - it needs to be consigned to the history books; we are #PeopleNotPuzzles (check out https://intheloopaboutneurodiversity.wordpress.com/2019/03/20/the-ableist-history-of-the-puzzle-piece-symbol-for-autism/ for your introductory reading, and then start doing some more reading, and there's some good research showing that the puzzle piece has inherently negative connotations) - we do NOT have pieces missing, we are NOT puzzles, and we'd seem far less puzzling if you actually LISTENED to autistic people

6) Apologise for the aforementioned horrific short films painting us as tragedies, burdens, etc, and that an autism diagnosis warrants grieving (yes, you have significantly contributed to that mentality and culture)

7) Stop blindly supporting the parents who murder their autistic children (your tragedy/burden narratives in the aforementioned films are drectly responsible in part for enabling and perpetuating that mentality) because of their disabilities, and start channelling far more resources into supporting those people and families who are struggling

8) Start putting substantially more of your funds towards actually supporting autistic people (and that does NOT include ABA)

9) Stop treating us as broken neurotypicals in need of fixing (again, that includes stopping promotion of ABA); we are NOT neurotypicals "trapped" inside a "shell" of autism, we are autistic through and through; we DO NOT NEED FIXING

10) Stop using person-first language ("with autism"/"has autism") and start using the identity-first language ("is autistic") that the overwhelming majority of autistic people prefer (by all means use both, but the exclusive use of PFL, despite you being told again and again and AGAIN, even on your own polls, that we strongly and overwhelmingly favour IFL, makes it abundantly clear that you ARE NOT LISTENING TO AUTISTIC PEOPLE. https://autistic-on-wheels.blogspot.com/2019/07/resource-key-articles-on-identity-first.html

11) Stop centring non-autistic parents instead of actual autistic people (this links in with 1, 2, 7 and 9 in particular).

12) And don't even get me started on how little of your funds are spent on supporting autistic people (1.7% in 2017 - yes, that's one point seven percent).

Your ableist attitudes towards us contribute to a substantial portion of mental health problems among autistic people because you contribute so much to broader societal attitudes about us. You say "different, not less", but less is how we are made to feel, and you have directly enabled this. Not just you, there are plenty of other groups, but you have a lot to answer for in that regard.

You may have made recent superficial changes, but it's going to take a LOT more than a bit of window-dressing to even *begin* to undo the massive hurt you have caused autistic people since your inception - and to be honest, it's unlikely you ever will, the damage is that severe. Actions speak louder than words.

Autism Speaks DOES NOT speak for me.

We DO NOT need (or want) a cure. Autism is a perfectly natural and acceptable neurological variation and should be accepted.

You have directly contributed, through your genderised use of blue, to the misdiagnosis and underdiagnosis of female and nonbinary autistics, because you and the colour choice (chosen for genderised reasons) have perpetuated, and continue to contribute to the perpetuation of, this myth that autism is a male thing.

You know who we SHOULD be lighting it up blue for? The NHS (the UK's National Health Service) and other care workers, especially in the current pandemic. (Blue because that's the NHS logo colour, for non-UK people.) NOT AUTISM. #LightItUpGold #RedInstead #AutismAcceptance #NothingAboutUsWithoutUs

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

Erin Bulluss and Abby Sesterka
Talking About Autism

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.