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

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.

Sunday, 29 July 2018

Take The Mask Off: week 1 list of autistic writings

I was hoping to do my own take on this but between being quite busy and the combination of temperatures of 30C and above and the accompanying humidity, my energy has been even more depleted and limited than ever. The mix of high humidity, and fibromyalgia and ME, is not a good one.

Short explanation: It's a campaign being run by advocates Kieran Rose (The Autistic Advocate), Hannah Molesworth (Do I look Autistic Yet?), Sara-Hane Harvey (Agony Autie) and Christa Holmans (Neurodivergent Rebel), and supported by the autistic activist/advocate community. This is a campaign by and for autistic people on the problems of masking, and is aimed at reducing the need (or the perception of the need) to mask our true autistic selves and replace them with a "mask" of neurotypicality. Here's the link to more details about the campaign: http://www.theautisticadvocate.com/2018/06/takethemaskoff.html

In lieu of my own article on the subject at this point (hopefully I will be able to catch up at a later date), this entry will be a collection of links to the many fantastic and informative posts written by other autistics, many of whom are friends of mine and who are fantastic people. For ease of use, I'm listing them in alphabetical order. If there are any I've missed, I will edit this post to include them.

Adriana L. White: #TakeTheMaskOff week 1

AutieFortyAndFAB: Some Thoughts on #TakeTheMaskOff

Autism Education: What is Masking?

Autistic Science Lady: Accepting my Autistic self

Autistic Superhero: Autism Unmasked

Autistic Zebra: What is Masking

Autistic Zebra: More on Masking

Autist Stuff: Why I keep my mask in my pocket

Blogging Astrid: What is Masking

Cambria's Big Fat Autistic Blog: My Relationship with the Mask

Cat Amongst Wolves: What is Masking

Comments From the Pecan Galelry: What is Masking

Eve Reiland: When The Mask Was Donned

Finally Knowing Me: Wasting Energy

Hannah Molesworth: Sky News interview about #TakeTheMaskOff

Inside The Rainbow: What It's Like to Wear the Mask

Libby's Autism Blog: What is Masking

Live chat between the 4 campaign launchers

Luciane Hatadani

Peter Wynn: Stop Masking It

Rosie Writes: Pass my Mask, I need to leave the house... 

The Asian Aspergirl: Understanding Aspies #TakeTheMaskOff Challenge
 
The Autistic Advocate: I am not OK

From prior to this campaign - not part of #TakeTheMaskOff but highly relevant to it:
Ryan Boren - Autistic Burnout: The Cost of Coping and Passing

Understanding Autistics: transitioning from being a lost 'neurotypical' to a happy autistic

Monday, 25 June 2018

Tackling bullying could help reduce depression in autistic teens: specific article

Tackling bullying could help reduce depression in autistic teens

I came across this article a couple of days ago (dated June 19th), sourced from the University of Bristol, and decided to offer my evaluation and perspective on it.

The short answer is: This is pretty obvious and makes sense.

Just over 6,000 children were studied as part of a longer-term study, the Children of the 90s study. I think the children are a mix of autistic and NT because the parents were recruited during pregnancy. The UK's population is around 65.6 million, with approximately 20% being children; the NAS estimates that there are around 700,000 autistic people (adults and children) in the UK. These statistics are not completely accurate as we don't know how many undiagnosed autistics there are in the country, but it has some use as a general guide. It is certainly a big enough study for the results to be considered significant, and it is feasible to extrapolate this for the UK population as a whole (although other factors for bullying come into play, such as socioeconomic status, co-existing medical conditions and disabilities, race, religion and so on). I would very much like to see a much bigger survey done to show whether this study's findings do accurately reflect the broader picture.

The article states that:  "The researchers did not find any link between having higher genetic tendencies towards autism and depressive symptoms" and Dr James Cusack is quoted in the article that: "it was bullying rather than genetic differences which drove an increase in depressive symptoms in autistic people".
 
The evidence demonstrates that it is not anything to do with the autistic structure or chemical balance of the brain, and that the increases in mental health problems among autistic children comes from external factors, not something internal such as biological or neurological factors. In short, autism does not cause mental illnesses, external factors do.

Some autistics will be more prone to depression and mental illness due to other genetics coming into play, so that should be noted, but those alone are not as a direct result of autism.

This study makes it pretty clear that far more should be done to prevent bullying because bullying is a substantial factor in the development of depression and the researchers have, rightly in my opinion, remarked on this.

Dr Deeraj Rai: 
"[T]hese findings suggest that focusing on the role of traumatic experiences such as bullying and interventions targeting these, could be important and may have the potential to make a real difference to the wellbeing of autistic people."

Dr James Cusack:
"We now urgently need to carefully understand bullying and other traumatic experiences in autistic people as we're now finding they can have a devastating impact."

Additionally, due to our social and communication difficulties/differences, we are more vulnerable to being bullied, according to Dr Alan Emond. 

So why is this? Personal experience and discussions I've seen in various autistic spaces suggests that it is because other children pick up on the fact that we are different, and use it against us. Different is seen as bad and undesirable. I was frequently labelled "weird", "strange" and other variants. I could not connect with the others on a social level in a way that the NT children could.

Emond suggests that:
"To protect autistic children and young people a whole school approach is needed to prevent bullying, coupled with targeted support for vulnerable individuals."

In short, yes. What we as a society need to be doing is teaching ALL children that bullying is wrong. That is where the problem lies. It's not the autism that causes the depression, it's the bullying from others because we're different. If all children were taught that bullying is wrong and being cruel to someone because they're different (or any other reason) is wrong, that it is socially unacceptable, it would be reduced, and thus fewer autistics (and, to be fair, other children generally) would become depressed. This is why we need autism acceptance. If autism was more normalised in social terms (such as behaviours not being labelled 'strange' or 'weird', and our way of being less remarkable) people would hopefully be less inclined to target us for that. Society needs to stop victim-blaming us for being bullying targets (eg. people, particularly teachers, parents and others in positions of authority, saying things such as, "If you don't flap your hands people won't pick on you") and start targeting the real issue, which is the bullying, which is cause by attitudes, negative beliefs and a degree of tribalism (the "us and them" mentality, where people who do not fit with a group's preferences are excluded). Society needs to stop forcing us to change, often at the expense of our mental wellbeing, when it is not us who are behaving problematically.

This article is important and significant, and needs to be heeded and acted upon.

Also, better knowledge and understanding of autism, particularly in girls is urgently needed - I didn't know until I was 23 that I was autistic, diagnosed age 28, and one of the biggest reasons I slipped through the net was because I'm female and autism is still very much seen as a "male" condition.

I was bullied for years because I was "different"; all the others around me picked up on it and targeted me. I thought I/my brain was broken. If I'd known when I was younger why I was different and that I was autistic, I would have understood myself far better and wouldn't have hated myself so much or thought I was broken.


Footnote: after a number of years of distancing themselves from Autism $peaks, it has recently emerged that Autistica seems to be getting back into bed with them in terms of research funding and projects. The autistic community is very disappointed to see this and does not endorse it.

Sunday, 17 June 2018

Inaugural Exeter Autistic Pride event!



Today I (as Autistic on Wheels) hosted the inaugural Exeter Autistic Pride event! It was a casual, low-key picnic on Cathedral Green, and the weather kindly held off (it was trying to rain initially). It was a fairly last-minute decision to do something (just under two weeks ago) but for a new event, simple was definitely better. Most attendees were autistic, and there were family members and friends too, and even a spaniel who was very well-behaved around all the food! Some were old friends, others were new friends and people I'd seen around online but had yet to meet in person.

We talked about all kinds of things. Autism was a prominent topic, rather unsurprisingly, but other things were also discussed and chatted about, and it was really nice to be with so many lovely people.

It was a great day: really friendly, welcoming and relaxed, with no NT social pressures or demands. I made the flags you can see in the photos (gold infinity symbol on a purple background) and people brought loads of food to share.

Next year I'd like to do something a bit bigger and more formal. In the meantime, we're thinking about doing something socially on a more regular basis.