Locked In For Autism update

WOW. What a hectic few days.

On Thursday/Friday I emailed several appropriate MPs about the Locked In campaign, a man at Tesco who appears to be fairly high up, Andy Bailey (the man quoted in the Hackney Gazette article in my previous post) and a woman at Third Sector Excellence Awards because Caudwell has been nominated for (an) award(s).

I have not yet heard back from the MPs I emailed (Diane Abbott as her constituency is Hackney; Penny Mordaunt as she's Minister of State of Disabled People; and Marie Rimmer as she is the Shadow Minister for Disabled People). Andy Bailey replied on Thursday saying he was out of the office until Monday (today) and to call him on the number provided; I'm not great on the phone and so I replied explaining that I have difficulties on the phone because I am autistic so could we please keep the correspondence to email. I have yet to receive a reply. If I haven't heard anything by lunchtime tomorrow I'm going to email again. I also have not heard back from the Third Secot woman; I did get an automated reply saying that she was away at the awards judging and so had limited access to email and that if it was urgent, to contact someone else in the organisation (this other person's email was provided). I emailed the alternative, because if the judging is currently occurring, this is an urgent matter due to the involvement of Caudwell. Again, I have yet to hear anything back.

I received the following email from Tesco customer service on Friday:

Thank you for taking the time to email Dave Lewis, our Chief Executive.

I’ve asked one of the team to look into this in more detail for you. Due to unexpected contact volumes we are taking a little longer to respond than we would have hoped however, one of the team will be in touch as soon as they can.

Thank you for your patience until then.

Tesco Chief Executive’s Office

By "unexpected contact volumes" I suspect they mean "many, many emails from autistic people flooding in since yesterday"! I know I'm far from the only one who emailed them.

I did not expect to hear anything for at least a few days. After all, it's a big company and they had a lot of anti-Locked In emails to trawl through.

This afternoon at 4:22pm I received the following email from Tesco:

I nearly fainted! I had to re-read it several times before it sank in. This is MASSIVE. It's a real victory. It shows that Tesco is listening to autistic voices and that we can make a difference. This is real people power - the autistic community has come together and clearly demonstrated that we matter, that we can instigate change, that we can get better, more appropriate representation, that we can get organisations to listen to and respect us, that we can be viewed as equals.

I'm amazed and exhilarated at such a swift response and decision. I suspect that some of the reasoning behind that is that a lot of people have contacted Tesco, particularly via Twitter on the @NotLockedIn account, to express their displeasure at and disagreement with their support of Locked In and to inform Tesco that as long as they continued to support Locked In, they would not be shopping at Tesco, and nor would their friends and family. The threat of losing customers and money is a pretty big incentive, especially on this scale! I hope that it is also because Tesco has actually listened to autistic voices and realised that Locked In is a harmful campaign. The email from them seems positive and I have replied, informing them that I am happy to work with them in ensuring they support appropriate autism organisations and causes in the future. I also asked for clarification as it is unclear whether the Hackney and Birmingham events will still go ahead.

So this evening we are celebrating this victory. It was well-fought and well-organised and I want to thank everyone who lent support, be it emailing, tweeting, sharing things on Facebook, signing the petition to Tesco, or anything else. You have been fantastic.

However, this was one battle, and it was the relatively easy one. Surprisingly easy, if I'm honest! Now we take the fight to Caudwell itself. It may be easier than we feared, though, as following Tesco's withdrawal of support they have suspended Locked In. Though it's suspended rather than terminated, so it's not as good as it could be, although it's better than we hoped at this stage (the NotLockedIn campaign has been going less than a week). The ultimate goal is to completely terminate this stunt, as well as any other stunts that are similar, either in method or theory, because they are harmful to autistics. Thanks to my fellow campaigner Sarah-Jayne for the screen grabs!

I'm going to analyse and critique this response:

• They apologise for distress caused, which is appreciated (if they are genuinely apologetic) but if not it is patronising and condescending; I really want it to be the former rather than the latter, but given their history my gut says the latter.
• They exclusively use person-first language, despite the autistic community voicing our objections to it and explaining why we reject that and use identity-first language.
• I and many others do not see how this stunt gets people discussing autism in a "positive and constructive way" and many of us have repeatedly told them (and explained why) that it does precisely the opposite, because it perpetuates old, inaccurate stereotypes - it Others us, turns us into a freak show, it dehumanises us.
• It is very telling that the "widespread" support that Locked In has received has been from the media and local communities, neither or which are likely as a whole to understand the autistic experience, and NOT autistics, who are conspicuous by our absence; it is neurotypical superiority and their presumed incompetence of us continues, as demonstrated by some of their responses to the suspension of Locked In, such as complaining because they apparently know autism because they're affected by it (though they aren't autistic themselves), as if we don't know autism! They think that because they are Autism Parents, they know autism, and they don't want to hear autistics telling them they're wrong and fail to understand why we find Locked In offensive and inaccurate. No; the real autism experts are the autistics! It comes down to ableist NT privilege, with NTs presuming our inferiority and incompetence. There would be outrage if a charity for women was founded and run solely by men, and then they did a stunt claiming to demonstrate what life is like for a woman, and then when women objected because it was inaccurate and false portrayals, they shut us up and silenced us; this is no different. They wouldn't do it to other marginalised groups, yet they think it's acceptable to do it to autistics, because society as a whole still presumes our incompetence and inferiority. THAT IS NOT ACCEPTABLE.
• I am pleased that they have taken note of the recent reaction; however, there is plenty of evidence demonstrating that this is not just a recent occurrence so it seems they are choosing to ignore that and are only focusing on what is current and widespread.
• Suspending the campaign is an excellent decision, and hopefully that includes the planned events in Hackney and Birmingham (the wording suggests that, as does the email I received earlier from Tesco, but I'm not entirely sure); however, it has not yet been abolished completely. I hope, with the NotLockedIn campaign continuing and pressure on Caudwell growing, the "comprehensive review" will come to the conclusion that they have to abandon Locked In. I would be interested in finding out what exactly the review entails and who is able to participate in it (it's probably an internal thing).
• If they do decide to abandon Locked In completely, my suspicion is that they would be doing it because of the negative publicity it's received recently rather than because they have actually listened to autistic voices, taken on board what we've said and realised that it is a harmful campaign. That said, if they do decide to abandon it completely, for whatever reason, I will accept that as a huge victory. However, whatever the outcome, I will be watching them extremely closely, keeping an eye on everything else they do, and I will not hesitate to speak out if they start some new inaccurate and offensive campaign.

Going back to the point about "recent reaction", I wish now to draw your attention to this, from November 2016:

 My issues:

• The stunt is based on an autism parent's opinion about autism, NOT an actual autistic. That immediately reduces and probably completely eliminates any validity and authenticity that this stunt has. Considering that Caudwell is supposed to work with autistics, is it really that difficult for them to make the effort to ask one of us?
• Regarding the autistics they allegedly consulted and the one who actually participated in Locked In, I would be very  interested in knowing what information about autism and the autistic (not autism; autistic) community these autistic adults had. Honestly?? I suspect there's a lot of internalised ableism and that these people have not had access, for whatever reason, to all the information out there. If they only have information from Autism Parents and specific organisations (particularly, say, Caudwell), they are not able to make a genuinely informed decision. Like so many autistics, once I found the autistic community, I recognised the ableism, the internalised ableism and the good and bad organisations.
• They claim that they "will endeavour to address the concerns of those who provided feedback", yet I have read a lot of that feedback provided through the Cat In A Dog's World post and Caudwell clearly has utterly failed to address any of those concerns - in short, they have ignored us.
• The last point makes it clear that this is about raising money, and awareness/understanding/acceptance is a distant second, despite them saying that this campaign is supposed to be about raising awareness.

The November 2016 post clearly demonstrates that Caudwell's words were empty then. They are going to have to do a LOT to show that things are different, and at this moment I have no reason to believe that their latest placatory attempt will be any different.

[22:45 edit: It's very interesting and revealing to note that Caudwell only suspended Locked In after Tesco pulled out.]

NotLockedIn is continuing. We have won the initial part with Tesco, but now we move on to Caudwell itself. Watch this space and please continue helping the campaign!

Locked In For Autism ableist stunt

I came across the following article on the Neurodiverse UK Facebook page earlier and it's really made me furious:
 

http://www.hackneygazette.co.uk/news/autism-charity-caudwell-calls-for-volunteer-for-50-hour-glass-box-lock-in-at-hackney-tesco-1-5094876

I've just emailed the person organising it with the response below and I will be very interested to see the response, if I even get one.

I have also, annoyingly, just realised that I also meant to say that at the end of the 50 hours, the person in the box gets to go back to their normal, everyday life, whereas us autistics live our often-marginalised lives 24/7. Ah well, it's a minor point and I said quite a bit else.

Dear Andy,

I have just learned of the above event through the Hackney Gazette and am curious about why Caudwell Children is persisting in these events (I am aware of one occurring in Burnley recently and that another is planned for one in Birmingham in August) despite the fact that many of my fellow autistics are voicing their objections to it for a number of very good and well-explained reasons. I know for a fact that the organisation is well aware of our repeated objections, which is why I was hoping you or someone else within the organisation could justify to me your reasons for continuing this stunt.

We are still persistently demonised and dehumanised by the world at large. Stunts like these do nothing to reduce that and in fact are more likely to exacerbate it.

It plays into an old, tired and inaccurate stereotype of autism. It perpetuates narrow, restricted and actively harmful stereotypes of autism.

It does nothing to improve awareness, only increasing fear and hatred of autism. We want to be accepted for who we are as we are. As autistics. We want the younger generation of autistic children to grow up accepting who they are and being okay with that, not feeling hated, feared and rejected by the world because they are neurologically different from the majority of the population. The world is hostile enough towards us as it is. We want these children to grow up into happy, confident autistic adults. There is a phrase in the Deaf community of "Deaf positive", and it means that Deaf people are accepting of their Deaf identity and are positive and confident about it, not feeling marginalised and separated from a world that views them as defective and does not accept them. Autistic children need that, not to have overhwelmingly negative feelings about their intrinsic nature; they need to know the world accepts them and does not view them as defective, need to know that they are as equally valued and wanted as their neurotypical counterparts. This stunt of yours sends a clear message that they are defective, rejected, unwanted and inferior. A cat is not a defective dog; it is a cat. An autistic is not a defective neurotypical.

Every day parents are being told that their child is autistic, and stunts like this serve only to send the message that we are frightening, separate, Other. It suggests that there is a "normal", neurotypical child "trapped" inside this autistic outer layer, and that if we break through that outer layer we can reach the "normal" child that is being held prisoner by autism. That is simply impossible, because there is no "normal", NT child trapped inside a shell of autism. Autistic *is* their/our normal and the world should accept that, and work to include us and break down the barriers, not add to them.

Persisting to carry out these events despite many objections from people who are actually autistic clearly demonstrates that your organisation does not want to hear actual autistic voices, that you are essentially sticking your fingers in your ears and going "La la la, I can't hear you". It sends a very strong message to us autistics that we don't matter, that our input and feedback is irrelevant, that you consider our perspectives unnecessary. An organisation that purports to support autistics needs to listen to autistic voices and listen and act on our requests, preferences and input.

It is overwhelmingly ableist because you presume to know what we want, how we feel, how we experience the world and impose your ideas and preferences on us whilst simultaneously ignoring the voices of those who live the autistic life. The mother whose idea this apparently was is talking about *her* experience, *not* her child's; unless her child has used this description it is not applicable. By persisting with this stunt you are actively silencing us. This is completely unacceptable. It sends a message to autistics that we don't matter, that our perspective is worthless; younger autistics will learn that their voices don't matter and so will give up speaking out, and they (and the world) will suffer because of it.

There's a saying in the autistic community that needs to be taken on board by your organisation: Nothing About Us Without Us. So far all I see you doing is *everything* about us without us, and that is unacceptable.

Your organisation seems to believe it is helping us. We are telling us that you are harming, not helping, us, yet you continue with this stunt; at this point it is wilful ignoring and silencing of us.

I also find your us of the phrase "unique, once-in-a-lifetime experience" in the interview with the paper completely inappropriate, because such terms are usually used in reference to an exotic, luxurious holiday or similar and so, with the way the human brain works, people will unconsciously equate the two. It is not a holiday or anything like that, and so it is disingenuous in the extreme to use such language.

This stunt is tokenism, a pat on the back for neurotypical people to feel good about themselves. It is *not* about the autistics.

And yes, I am using "autistic" (identity-first language, or IFL) rather than the person-first language, or PFL ("has autism"/"person with autism") rife throughout the article and your interview because the vast majority of autistics favour IFL and actively reject PFL. The National Autistic Society has recent data clearly demonstrating this and the fact that you persist in using PFL is yet another indicator that Caudwell Children does not listen to autistic voices.

The article below is not mine, but it seems your organisation needs reminding of a few things on this matter.

https://acatinadogsworld.wordpress.com/2016/11/12/how-lockedinforautism-is-hurting-actuallyautistic-people/

I await your response.

Random autistic stuff

Just a quick Sunday-evening post because I was doing this with my Crispy M&Ms and I thought, "That's probably something to go on the autism blog". It's something I do constantly with anything that's a mix of colours (and always have done). M&Ms, Skittles, etc. and it is part of being autistic.

I like to know how many of each colour I have, then I work out which colour has the fewest, so I give eating priority to those of other colours that exceed the number of the colour with the fewest, so there's the same number of each colour. Then I'll eat either one or two of each colour so that by the time I've eaten one or two of the final colour there's still the same number of each colour.

It's partly a flavour thing when it comes to Skittles - orange is my least-favourite colour, so I eat all the orange ones first, then the blackcurrant ones, then one each of lemon and lime together, then finish with strawberry, which is my favourite. With M&Ms flavour isn't an issue, but I still go for the orange ones first, then the brown ones, then usually red, yellow, green and finally blue (though for some reason today I did it the other way round - I don't know why and now it's bugging me). If I'm in a situation where I can't count them, line them up and so on it does stress me out. That situation's most likely to occur when I'm driving, although as Gideon doesn't particularly like Crispy M&Ms we don't tend to get them, so that scenario doesn't come up very often. If I'm munching on them while driving alone, I just have to grit my teeth and put up with it because there's not much I can do.

On its own it's not a harmful behaviour so I'm not going to do it just because it's considered a bit "odd" or in order to seem NT or anything like that - I don't modify my behaviour in order to "pass" as NT because I am autistic and don't want to be anything else. However, I'm far more likely to engage in it rigidly and inflexibly when I'm stressed, so if I'm being really strict about it, it's usually an indicator that something is off and that I need to watch myself in case my other OCD behaviours kick in, behaviours that can cause actual problems.

Harry Potter, autism and me: Harry Potter 20th anniversary

#HarryPotter20

Today marks the 20th anniversary of the release of Harry Potter and the Philosopher's Stone (or Sorcerer's Stone, if you're American), and the world is celebrating it. And rightly so. This series of books is one of the most popular, loved and powerful in the world.

"Harry Potter? But I thought this was an autism blog!" I hear you cry in confusion.

It is an autism blog. But for me, the two are intrinsically linked. So I'm going to give you the background and then elaborate. It's not perfectly polished and I suspect I've not thought of everything I want to say (I'd like to write a neater, better-structured, more polished article in future, one that's as comprehensive as possible, one I'm not trying to bash out in 3 or 4 hours, but this is the original for HarryPotter20 to get it out on time while it's still June 26th).

And I'm a proud Hufflepuff.

Background

I was 16 and in Year 11 (that's 5th year, OWL year, in Potter-speak) when my schoolfriend Meng Yun first introduced me to the books because she thought I'd enjoy them. At this point only the first four were out (this was late 2000). I raced through PS and for Christmas that year Meng Yun gave me Chamber of Secrets, which I also devoured. It didn't take me long to get through Prisoner of Azkaban and then Goblet of Fire. And then I had to wait! Order of the Phoenix was released at midnight after my last A-Level exam (a 2 1/2-hour English Lit paper) so I went down (having persuaded my father to drive me) to the local WHSmith to pick it up - I was so eager to get it! There were only a few people there, and I only knew about it because a couple of people from school worked there. It took me about 8 hours to get through (I skim-read, as much as a dyslexic can skim-read (undiagnosed at the time)). It was a bit more hectic in 2005 when Half Blood Prince came out - again, I went down for the midnight release, which was a bit more bustling this time as it was actually advertised. Then, in 2007, the final instalment, Deathly Hallows, came out; I went down, again to WHSmith, with my friend Tammy, this time in costume, and met Aaron and Freyja (primary-school friends of mine and siblings; we're probably distantly related as we have the same surname and family from the same parts of the county) there. It was packed this time! When Tammy and I got back to my parents' we forced ourselves to go to bed and then spent most of the next day curled up in my bedroom with noses in our respective copies. And that was it, the entire story available, and there would be no more late-night book releases in costume. The end of an era in some respects.

Life happened. I never fell out of love with this amazing world, but other things and interests took up my time so I spent far less time in this world.

Then Cursed Child happened. I don't want to get into a debate here over whether or not we should accept it as canon, plot flaws, quibbles, etc because this post isn't about that. CC was released last July (2016) and this time my poor husband got dragged down in costume to the big Waterstone's in Exeter for a launch party (with all kinds of games, quizzes, etc,10pm-midnight, at which point the playscript in book format was released, if you'd pre-ordered). It was a lot of fun! So bang! I tumbled straight back into the world as hard and fast as before! Since then I've done the Harry Potter studio tour at Leavesden (went for my birthday), went to an exhibition in Newton Abbot (it's now on tour) of art from the new illustrated editions and even managed to go and see CC in the West End (with the original cast, no less; and I'm going again next month!) My poor husband isn't anywhere near as into HP as I am so he's having to put up with quite a lot!

Harry Potter, autism and me

Harry Potter has been a significant part of my world for half my life now. During that time I have written (and am still writing) quite a bit of HP fanfiction, dressed up and made some lifelong friends. Katharina, who I've mentioned before, is like a sister to me and one of my best friends, and we originally met through HP fanfic! One of the things I enjoy about fanfic is that it's an opportunity to explore the world and characters in it, maybe try to understand it and them better.

It's one of my Aspie special interests. Pretty much everyone who knows me will tell you I'm a rolling Harry Potter encyclopedia and I can talk about it for hours. And hours. And hours! (And maybe days...) Gideon and I once spent most of a drive from Exeter to Southampton (2 1/2 hours) discussing the complexities of Narcissa Malfoy, and there was still more we could have said.

JK Rowling's writing has always been very vivid, vibrant and visual, which works really well with my autistic, visually-wired brain. There are some books I've read where I couldn't visualise the characters, the world, etc very well, and that tends to put me off those books. I need to be able to visualise to fully enjoy a book or world.

Being autistic in a neurotypical-oriented world, especially being an undiagnosed and unidentified autistic in that world, meant that I was constantly the outsider, constantly confused by things that other people understood and were comfortable with, constantly uncomfortable and out-of-place in a world where others were comfortable, at home and fitted in. I didn't fit in, and there were social rules, concepts and expectations that people assumed I knew, so when I got it wrong it brought bafflement and scorn upon me. So Harry, particularly in PS, really resonated with me. He was the outsider, the one who didn't fit in, the one to whom things didn't make sense. Like me, he was bullied. He was in this world where he did not belong; so was I. He was different from everyone around him; so was I. We both knew this, yet neither of us understood why.

And then we were introduced to these entire worlds we'd known nothing about. For Harry, it was the wizarding world; for me, it was the autistic world. Suddenly the strange things that didn't make sense before, made sense and had an explanation - for Harry, it was odd occurrences like ending up on the school roof or the glass vanishing from the snake enclosure; for me it was sensory overloads, meltdowns, misunderstandings, being mocked and targeted because everyone (including myself) picked up that I was different. Harry found out he was a wizard; I found out I was autistic.

And then we realised that there was a world to which we belonged! That revelation is life-changing, it really is. There were explanations for why we were the way we were, there was a community to which we belonged, there was a world where things made sense for what felt like the first time ever. And we both embraced our respective worlds.

There was terminology to get our heads around, things we'd never come across before, new kinds of people, but they were part of that world and we absorbed them sponge-like (though I think it's safe to say I do a lot more reading and active research about a lot of aspects of my world than Harry does about his!)

There's the assumption from other people that because you're part of a community or a world, you know all the rules, conventions and so on, but that's not always the case. Magical folk assumed that because Harry was born into that world, he knew certain things that he didn't, because he grew up in the Muggle world (Voldemort, Hogwarts houses, currency, etc); I've had people assume that I know everything about autism (I wish! Though it's something I'm working on) because they've assumed I was diagnosed young (I was 28 when I was diagnosed) and grew up in that world. We've had to find our own way, and to an extent we're still doing that.

We've both discovered that the world to which we belong isn't perfect. Both worlds have bullies, presumptions, hierarchies, bigotry and an us-v-them mentality - for Harry, there is the pureblood-superiority attitude as demonstrated by people like the Malfoys (though the war does drastically change Draco's viewpoint on that particular subject, ultimately causing him to completely reject and abandon it); for me, I've encountered autistics who are convinced we're the master race and eminently superior to NTs, people who think that those of us who are classed as "high-functioning" aren't really autistic and thus don't belong in the community, and then there are the Autism Warrior Parents (AWPs). But we're both trying to improve our worlds, and work together with people on that.

It's not just Harry. I feel a real connection with Hermione (my LiveJournal - which I should really update at some point...! - is called Hermione's Hideout) because we have so much in common: a desire to learn EVERYTHING ABOUT EVERYTHING in our world, our academic ability and an enjoyment of it, perfectionist tendencies, overachiever, thought of as a bit odd by others, and determined and driven to forge our path in a way that makes a positive difference to the wider community.

There are marginalised characters in Harry's world, and I've always found myself drawn to them, especially Remus Lupin and Severus Snape. Like Lupin, I've been (and realistically still am in some ways - although I'm white and cisgender, I'm also bisexual, female, physically disabled and autistic) on the margins, shunned and pushed aside, considered lesser because of who and what I am - in JKR's world, werewolves are considered to be monsters, less than human, and there are so many people out there who consider autistics to be, if not monsters (though some do see us that way), at least less-than-human, not deserving of the same rights as NTs.

Like Snape, I was bullied by the popular kids because I was odd. I wouldn't be at all surprised if he has a history of self-harm etc. I didn't really have many friends when I was younger because most people wanted nothing to do with me, due to my oddness and social difficulties.

I love Luna! She's wacky, odd and very much dances to her own tune. She doesn't care what other people think about her - she's aware of it, although she doesn't often let on, but she generally doesn't let it bother her - and lives her life the way she wants to, whilst being as kind as possible to everyone. I very much try to take that approach these days; in some ways I wish I'd encountered her earlier because that might have made it a bit easier to metaphorically stick two fingers up to the people who made my life hell and I might have done it sooner, but ah well, it didn't work out that way. I got there in the end. I really hope young people, particularly autistics, follow her example.

Also, Harry Potter saved my life. Literally. Because I was an undiagnosed autistic, I was different (though I didn't at the time know why), everyone picked up on it and many of them made life hell for me because of it. They didn't know or understand why I was different from them - it didn't matter - only that I was, so they made my life hell. I was bullied throughout secondary school, mainly through snide comments and exclusion. There wasn't much physical bullying involved, just the occasional trip, elbow or shove in the corridor, or strategic kicks to the back of a chair or stool; it was much more in typical girl-bullying fashion. I might post in more detail another time, but the short story is that I was severely depressed for most of my time at secondary school. I started self-harming when I was 15 and was suicidal for quite a lot of Lower Sixth.

[As I said on a previous post, Liz Morris, Sarah Jones (family of mine), and Ann Libby and Sue Foster and any other friends of my parents, if you're reading this, please don't say anything to my parents about this because they to this day don't know about it, and I'd like to keep it that way.]

And this is where JK Rowling and her creation saved my life. I don't remember much of Lower 6th because I was so depressed, but I do remember being actively suicidal and there was a point where I was about to attempt suicide when a little voice in my head said, "But if you kill yourself now, you'll never find out what happens in the fifth Harry Potter book. Or the sixth or seventh books." That pulled me up short. I moved the blade just far enough away from my wrist. I thought about it again and the words echoed around my head. I can't remember if I then self-harmed instead of attempting suicide - I can't remember what I did; all I remember is those words and that I did not attempt suicide that night. Where those words came from, I can't be sure. I'm Catholic, so my view is that it was God. Readers of this blog who aren't Christian may well have different opinions. The important thing is that that voice stopped me and I didn't try to kill myself.

I feel like I've missed some things, but this is fairly long!

In summary, Harry Potter has been, and continues to be, massively significant and influential in my life. I've made some amazing, lifelong friends through this fictional world. I see parallels between Harry discovering the wizarding world and myself discovering the autistic world, finding out who and what we really are; I've found characters with whom I really identify and resonate; and it literally saved my life at one point.

Here's to the next 20 years and more of Harry!

Eye-contact issues (specific article)

Researchers Explore Why Those With Autism Avoid Eye Contact

I just came across the above article, from last Friday, in Neuroscience News. I'm always interested in the scientific reasons for why we are the way we are (both autistic and NT) and this is one that has piqued my curiosity in the past.

I generally don't make eye contact with anyone. I could count on the fingers of one hand the number of people I've intentionally made eye contact with, and even then it's brief and fleeting. Accidental eye-contact makes me physically uncomfortable and I shudder when it happens. My skin prickles and it hurts, to the point of being unbearable. It's something that often gets commented on, and my inability to make eye contact has been mentioned in feedback from job interviews, that they didn't like that I didn't do it. It's one of the reasons I sought a formal diagnosis and now I always mention it prior to any interview because otherwise it will count against me (if I disclose and it's used against me, that counts as disability discrimination; if I don't, they don't necessarily know that I'm autistic and thus measure me against NT norms because they don't know any better). 

Are you aware how difficult and unnatural it is for so many of us? Because it is unnatural for a lot of autistics.

During conversation I tend to look at people's mouths, so it's less obvious that I'm not making eye contact (I don't do it in order to make it less obvious; the "so" is more a "thus" rather than a "because"). I frequently have people say to me, "But you were making eye contact just now!" Er, no I wasn't. I must confess to being rather baffled that they can't tell that I'm not doing it - the physical sensation is so strong in me; is it not for other people? Surely you can tell if someone's doing it? If you're an NT reader I'm genuinely interested about whether or not you can tell, and why/how. I look at mouths partly because it's where the movement is - being so visual, the slightest movement catches my attention, so my gaze will be focused on where the movement is occurring - and partly, these days, because I sign so the mouth gives important cues for exact meaning, emotion, etc, and finally (and I think the biggest reason, from what I can tell of my self-analysis) it's because I have auditory processing issues, so lipreading helps contextualise and clarify what's being said.

Also, eye contact on top of concentrating on the words being spoken is just too much sensory input for me and I can't focus, especially when there are other sensory inputs from the surrounding environment. Multiple noises make it impossible for me to process and comprehend speech; lipreading over eye contact can often be the difference between me understanding or not understanding something.

I really don't get why people make a big deal out of making or not making eye contact, other than it's a social NT norm. Gideon (my husband) tells me that lack of eye contact generally send the message that you lack confidence or that you're hiding something/are untrustworthy, so presumably it's all tied in with that (it's something I might look into another time). I get frustrated that so much emphasis is placed by professionals, experts and parents on autistics (particularly autistic children) on making eye contact - there are better things to spend time, effort, money and so on, on, than enforcing NT norms on us, particularly one that causes so much discomfort. I get annoyed with parents going on and on about how it's so wonderful that their child finally made eye contact, especially when it's after however many hours of "intervention" (generally code for ABA and similar) - is that really the most important thing??? Seriously??? 

On to an analysis of the article.

First, I would like to note that "abnormal" in scientific terms and articles does not necessarily mean faulty or broken; it means different from the majority (and autistics are in the minority compared to NTs) and is a completely neutral term. Yes, in the wider world it is considered perjorative, but in the scientific world it is neutral. It does make me a bit uncomfortable, I have to admit, but I also know that in this context it is a neutral term. 

Pros:

• It's fairly easy to read and well-summarised (the information in it is taken from a scientific academic journal article), so is somewhat accessible for a non-scientific readership (which is so important for disseminating accurate information, because the vast majority of us don't have biomedical or neurology degrees).

• I really like that it contains the experiences of actual autistics as to how making eye-contact feels; we are the best people to ask. It's so important to get our perspectives, our words, rather than just those of NT parents, professional and experts.

• This research uses techniques that should be easy enough to duplicate by other scientists.

• It indicates that the reason behind the differences in eye contact between autistics and NTs has a firm biological reason/root, so it is an "overactivation of subcortical brain structures in response to direct gaze" rather than us being 'difficult' or 'lacking interest'. Thus hopefully it will stop us being punished for what is perceived as bad or disrespectful behaviour.

• It reinforces the concept that there are clear, distinct differences between autistic and NT brains; maybe that will help dissipate the notion of "we're all on the spectrum".

• Clear, replicable scientific methods such as the one used here could eventually assist diagnosis, with definitive scans and tests supporting the current methods (like audiology tests for deafness, for example).

• There are plans to further this research, which is a good thing.

Cons:

• The article's language can be a little too technical for some readers - I have an A-Level in biology and an HND in occupational therapy so my understanding of neurology, and structures and functions of different parts of the brain, is perhaps a little above that of many others, so it isn't quite as accessible as it could be (though it is worth bearing in mind that it is a neuroscience site, so the target readership has to be considered, and hopefully anyone without the relevant knowledge about things like functions and structures of the brain will then go away and read up about it).
  
  
• It refers to the difference as "abnormal", which although as stated above is a neutral term within science, does make me uncomfortable because of the negative associations of that. Perhaps "difference","minority neurology" or similar would be better?
  
  
• It exclusively uses person-first language, which may seem like a petty quibble but as I and other autistic writers have stated and explained, it actually really matters, because perpetuating PFL reinforces that autism is something that can be separated from us, that we are a "normal" person with the autism as a detachable add-on, which is not the case (and this research demonstrates that our brain wiring is inextricable from our identity, so the use of PFL in an article showing that autism cannot be separated from a person and is intrinsic to who we are seems somewhat oxymoronic).
  
  
• And the big one: stating that NT norms should be the goal and what is natural for us should be eliminated:
  
  
  'In revealing the underlying reasons for eye-avoidance, the study also suggests more effective ways of engaging individuals with autism. “The findings indicate that forcing children with autism to look into someone’s eyes in behavioral therapy may create a lot of anxiety for them,” says Hadjikhani, an associate professor of Radiology at Harvard Medical School. “An approach involving slow habituation to eye contact may help them overcome this overreaction and be able to handle eye contact in the long run, thereby avoiding the cascading effects that this eye-avoidance has on the development of the social brain.”'
  
  
  It sounds to me like they want to employ CBT techniques. That can be beneficial for some things, like overcoming phobias, because not overcoming phobias can be severely limiting for people's lives, such as agoraphobia preventing someone from doing grocery-shopping, working, socialising and things they enjoyed. Desensitisation and so on can really help (I say this as someone who has OCD tendencies; I try to rein those in because otherwise they cause real problems in every aspect of my life).
  
  
  But autistics not making eye contact is NOT HARMING ANYONE. The only thing that's negatively affected is NT social norms and the NT's feelings, at the expense of the autistic's. Never mind that it's physically uncomfortable, if not downright impossible, for us - we are still expected and encouraged to conform to NT standards. And that is something that doesn't have to happen. What should happen is that with this newfound knowledge, we disseminate that information and use it to support and assist diagnosis in order to benefit autistics, not in order to train us like dogs (such as with ABA) to seem more NT, to conform to NT standards. Because that's what the author(s) is/are suggesting: that we use this knowledge in order to enforce NT norms and train autistics to present more neurotypically. Not to accept our differences.
  
  
  What we should do is say, look, this research demonstrates clear biological and neurological differences between autistic and neurotypical brains; this shows that society should learn about, understand and accept this difference, and accommodate it. NT people should accept that a lot of autistics do not and cannot make eye contact because it is physically uncomfortable, distracting, overloads the senses, etc, and work around that. Plenty of autistics function perfectly well without making eye contact - I'm fairly sure my friends and family would say that I do, and that not making eye contact hasn't caused negative impacts on my life (the job-interview-feedback situation is very much a past one, before I knew I was autistic; since I've realised and been diagnosed, I've disclosed and it hasn't got in the way as far as I can tell, as the few interviews I've been to, my explanation and reasoning have been accepted with a smile). Not making eye contact hurts nobody, just NT norms and expectations, and with education and acceptance, those can be broken down as they don't have to exist.
  
  
  Stop forcing your NT norms on us with no regard for their impact on us. Respect our diversity.

Autism rates country-by-country (specific article)

I just came across this article in an autistic group I'm in on Facebook and it really got my hackles up.

11 Countries With the Highest Rates of Autism in the World

This is my reaction to it:

Bottom line: really crap article.

Talk about fearmongering! The language in this article is horrific! This whole article is disgraceful.

"The phrase "taking its toll", like we're a burden and nothing else - UGH.

Then there's "The prevalence of autism is on the alarming rise" - where's the evidence? The article's author seems to be completely incapable of differentiating between prevalence and diagnosis rates.

"autism is far more likely to affect boys than girls, a fact that is still unexplained" - not *far* more likely, and this difference is largely because females are so underdiagnosed (which this article completely fails to take into consideration).

Why the hell bring the repeatedly-debunked MMR "link" into it? Why even mention the MMR vaccine? This makes me really wary of the author's agenda.

The age group from which data was taken varies from country to country, so of course that's going to have an impact on rates - it's likely that ones with younger children and fewer older children will be higher because of better diagnosis rates among younger children as knowledge and understanding develops and expands. Not a particularly good method of comparison.

Ditto from the year when the data was taken - there's a huge range of years (for example, Denmark was from 2011, Sweden's from 1999, a gap of 12 years, 12 years in which knowledge and understanding of the full extent of the autistic spectrum changed and improved massively). You cannot justifiably use this as a reliable means of comparison.

Same for data-pool size and geographical area - they vary far too much. Some are just from one city, others nationwide. Rates will probably differ between a city-wide and a nation-wide scale, especially if there are good, autistic-friendly schools in a particular city and not so much on a national scale.

The data available does not allow for a valid comparison, the vaccine comment was completely unnecessary and the language in the introduction (pre-country-by-country stats) is pure fearmongering, like we're something to hate and be afraid of.

What are your thoughts on the quality, accuracy and tone of the article?

Invitation for topic suggestions

Now April and all the Autism Awareness/Autism Bewareness Month stuff is over, I'm looking for suggestions for things to post about on this blog. There are quite a few things that I touched on during the #30DaysofAutismAcceptance challenge/task that I want to explore further, as well as other things. As well as the topics included during April, I'm thinking of the following:

- a series on autistic and possibly-autistic fictional characters (book/TV/film)

- technology

- grieving (it's prominent at the moment because of Granny Mac's recent death)

- the combination of autism and fibromyalgia and ME/CFS

- ask an autistic

I also welcome suggestions for anything and everything! So, my questions to you are:

- What topics/themes would you like me to discuss?

- What have you always wanted to know about autism but were afraid to ask? (It can be absolutely anything, however embarassing/awkward - I won't judge, and you can always PM me if you don't want to leave it on this post.)

- Which fictional characters have you come across that are/might be autistic? And why do you think so? I'd like to look into as many as possible.

There are probably other things but I can't think of them right now.

Fire away!