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?

"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.

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

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.

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.

Integrated wheelchair ramp and steps design

I've seen this image circulating recently and a couple of days ago a friend tagged me in it as they thought that as I'm a wheelchair user I'd probably want to comment on it over here. Correct! While this is primarily an autism blog, it is also a wheelchair-use/disability blog.

This is a real thing, in Robson Square in Vancouver. https://www.canadianarchitect.com/features/robson-square-2/ By all account it's now used in architecture courses to demonstrate how not to design things. 

Here are my thoughts.

Initial reaction: Nope, nope, ALL OF THE NOPE!

Then I took a few moments to come up with a more eloquent response.

1) The complete absence of rails, which are pretty important for safety, especially when going down the slope, is highly problematic. I'm pretty confident and a bit of a risk-taker when it comes to slopes (I live in Devon, which has a LOT of steep hills!) but even I balked at that. I wouldn't feel at all safe going down that slope.

2) Not all people who rely on the slope and can't use steps are wheelchair users - some use walkers, some use sticks or crutches - and many of them rely on handrails for stability and safety. These people cannot access this place.

3) Those turns are really tight, with not much room for manoeuvre, and anyone in a non-standard-size chair (mainly wider ones and power chairs) will find the hairpin bends difficult, if not downright impossible, to negotiate. And throw into the mix point 1, above, I wouldn't want to attempt it!

4)  With the ramp cutting back and forth between the steps, there will be collisions between wheelchair users and others with mobility problems that need to use a slope rather than steps, and able-bodied people. People tend to favour walking in a straight line, don't always pay attention to everything around them and are less likely to register or be aware of those who are lower than their own head height. I would rather have a separate ramp.

5) That ramp is long, so for anyone with fatigue or stamina problems (like myself), someone with a heavy chair or someone who is new to requiring the ramp, it can be really exhausting - and there's no rest stop, bench or anything, which means they'll block the route.

6) It doesn't look like there's any passing space, so realistically only one chair user at a time can use it. Not particularly practical.

7) Anyone with visual processing problems will struggle with the layout.

8) Anyone who's blind or partially-sighted will find it a challenge.

9) Inclement weather conditions, particularly ice, are pretty terrifying if you use any kind of mobility aid - could you imagine the skids and the loss of control that will lead to someone taking a nasty tumble?!

 edit 03/08/19:

10) The irregularity and inconsistency of step height can cause real problems for some people with balance and mobility difficulties, and they would thus struggle to safely walk up/down these steps.

So, nope nope NOPE!

Autism Acceptance Month 2018 Day 30: Conclusion and Thank you!

I have reached the final day of this marathon! Phew! I'm pretty exhausted so I'm going to allow myself some time to recover next month. I'll still be pretty active, but don't expect anything like a new post every single day! I'm making plans for future blog posts and I'm always happy to take suggestions and requests, whether for a one-off post or for a series (the best way is contacting me via private message on the AoW Facebook page). The seemingly-random capitalisation of some words is intentional - it denotes specific posts I have made throughout the month, and the links to those posts are embedded within.

This month has been all about Autism Acceptance, taking it back and claiming it for ourselves as an Autistic Community, myself and many other autistics. We kicked it off by bracing and preparing for the onslaught of blue, puzzle pieces, blue puzzle pieces, "awareness" and Warrior Parents™ on April 2nd. We need all the Resilience we can get, which we have developed over many years.

Everywhere I look on Social Media, people have been going Red Instead or Gold for autism acceptance, embracing and celebrating Neurodiversity in a variety of manners, including sharing autism acceptance memes, sharing autism acceptance articles and raising funds for autistic-led organisations. This blog has been shared by friends and strangers alike, by individuals and Facebook pages. I have discovered new Blogs and read new posts on ones I already followed, those of friends, acquaintances and strangers, many of which are written by autistic Women. During this month I have strengthened existing Friendships and created new ones through the autistic community. I encourage you to read blogs written by those of us who are #actuallyautistic because we are the ones who have the first-hand Experience of living the autistic life, the ones to whom you need to come to gain the best Knowledge of autism; we are the Xenagogues to the autistic world.

Join us in celebrating the fact that each autistic person is Unique, even though we share a neurology and certain Mannerisms. Appreciate that we tend to think Out-of-the-Box and can offer different and valid perspectives. Respect and accept our Zones.

And all this is possible because of the advances in Technology, some of which were developed by my neurosiblings! There is so much Love, of all kinds and all expressions, in the autistic community, which has done wonders for the acceptance and embracing of an autistic Identity for many of us, both those with a Diagnosis and those who are not (for whatever reason).

As many of you know, I have been heavily involved in the creation and promotion of the petition against the Judge Rotenberg Center in the US, calling for an end to the barbaric, inhumane, torturous electric-shock practices there. The creation of it came about through social media, autistic Hyperfocus and strong sense of Justice, and has certainly become one of my Passionate interests. The Autistic Self-Advocacy Network has taken control of it now, from The Autistic Advocate, Cal Montgomery and myself, and when I checked it just now it had just passed the 273,200 signatures mark, which is amazing! The fight is not over yet, not until we #StopTheShock. Please sign and share if you have yet to do so, and if you have done, please share again! Let's count this amongst the autistic community's Victories!

And why do we do all this? It's partly for ourselves, but also for autistic Youth, in the hope that they will not be misunderstood or have to struggle or fight the battles like we have had to. Let us build a better future for all of us.

And on that note, I am going to sign off from Autism Acceptance Month 2018 by having some well-earned and well-needed Quiet. Probably with something Harry Potter-related.

Thank you for all your support, input and encouragement throughout this month. I value and appreciate it more than I can say. Keep on being Âûsome!

Autism Acceptance Month 2018 Day 29: articles on autism acceptance

BSL: article

Following on from yesterday's post of Autism Acceptance Memes, today's post comprises a (non-exhaustive) collection of articles and blog posts written by others on the subject of autism acceptance. Some of them have helped me on my journey of understanding and accepting autism in relation to myself and some of them are ones I've come across since that I want to amplify. For ease of reference, I'm listing them in alphabetical order.

Thank you to everyone who has written and/or shared these posts.

A Heart Made Fullmetal Awareness v Acceptance

A Heart Made Fullmetal: Embracing Autism

A Heart Made Fullmetal: To the Autistic Child 

Alex Forshaw: Poisonous Expectations

Alex Forshaw: The Dark Side of Passing

Amy Sequenzia: Celebrating My Life

Amy Sequenzia: Normalcy is an Ableist Concept


Amy Sequenzia: To You, Young Autistic Friend

Amy Sequenzia: Why I don't like awareness

Ann Memmott: Autism Acceptance - my list of positives

Ann Memmott: Autism: Not a mental health condition 

Autistic and Cheerful: Acceptance is vital for good mental health 

Autistic and Cheerful: Acceptance vs Awareness

Eilidh Cage: Autistic people aren't really accepted - and it's impacting their mental health

Emily Willingham: No Foolin': Forget About Autism Awareness and Lighting Up Blue 

Henry Frost: Two Houses

Kieran R: An autistic diagnosis

Leah Kelley: H on Acceptance, love and self-care

Leah Kelley: In this house we do acceptance

Lei Wiley-Mydske: What is Autism Acceptance?
 
PC Durbin-Westby: Autism Acceptance Month 

Radical Neurodivergence Speaking: Acceptance vs Awareness

Steve Silberman: Why "Autism Awareness" is Not Enough

Unstrange Mind: A is for Autism Acceptance

Autism Acceptance Month 2018 Day 28: Autism Acceptance Memes

Today is a selection of autism acceptance memes and images that I particularly like. I've especially honed in on the ones that link to some of the words I've discussed this month.

Amy Sequenzia

 

Autistic Disney



Autistic Not Weird



Autistic Self-Advocacy Network

Autistic UK



Color the World for Autism Acceptance

 



 





Ed Wiley Autism Acceptance Lending Library
 



Ellen Notbohm





Identity-First Autistic



Jeanette Purkis









Ollibean



PACLA (Parenting Autistic Children with Love and Acceptance)



 

Autism Acceptance Month 2018 Day 27: Z is for Zone

BSL: zone or area (bottom left sign) or focus (bottom left sign)

Z is for Zone

Thanks to Pamela, and also to Gideon and Jenna for throwing a couple of suggestions on this subject at me as well.

Comfort Zones (Pamela)
This can be a tricky area to navigate, not least for parents new to the autism world who are being bombarded with often contradictory information, so they get overwhelmed and confused. This is where us adult autistics come in (see E is for Experience and X is for Xenagogue).

There is a persistent notion that parents have to constantly seek to force their autistic child out of their comfort zone in order to get them to accept new things. Wrong approach. Forcing does no good, can actually be counter-productive and is cruel. The autistic person generally has good reason for refusing to do something, and the answer is not to bully them until they are exhausted, their will is broken and they comply because they have come to realise that what they want and can cope with does not matter, but to seek out why they are refusing it, decide how important it is that they do/don't do it and then working with them to get round it if it is important - and accepting that if it isn't actually that important, there is nothing wrong with letting it go.

Ask yourself this:

• Why are they refusing?
• Would they enjoy it if the reasons for the refusal can be worked around?
• Do they even want to do it?
• Can the refusal be worked around?
• Is it essential? In the grand scheme of things, does it matter if they do not do it?
• Who is it for?
• Can it be done on another occasion?

I say this particularly in light of the most recent article about Whitney Ellenby (aka "ElmoMom"). I will be writing more on that on another occasion because this month is about acceptance and she demonstrates a distinct lack of it.

So why do we refuse to go beyond our comfort zone?

A lot of it comes down to anxiety and fear of the unknown. And the unknown is a massive thing for us, often overwhelmingly so. The world is so busy and chaotic that we need to know absolutely everything possible. It could be because we've picked up negative feedback about the thing from other people. Maybe we need more information. Maybe we've done it before so we know we can't cope with it. Maybe we're tired, or ill, or in pain, or hungry, so our ability to cope with something new and our anxieties, to tolerate sensory input, other people, etc is a lot lower. Maybe it throws our routine off too much. Maybe we had already planned to do something else. Maybe we're terrified of disappointing you, especially if we know you've spent a lot of money on it (particularly if in the past you have expressed disappointment, displeasure and unhappiness with us, or tried to make us feel guilty, about similar things in the past). Those are just some of the reasons.

One key aspect of autism acceptance is recognising that we have our comfort zones for a reason, acknowledging and respecting them and working with us.

When I'm stressed, tired, anxious, in pain, or otherwise in a less-than-optimum state, I need to be in my comfort zone in order to recalibrate and to simply cope with the world. I need to have some time to feel comfortable and safe. Pushing me on, keeping me out of that comfort zone, insisting on me feeling anxious, uncomfortable and unsafe, does nobody any good. These days I am fairly good at recognising my limits and articulating (whether it is spoken, signed, written or typed) them, and being firm about having them respected. As a child, if people encroached on my comfort zone when I couldn't cope with the world, especially if I had made that as clear as I could, I would smack them away, bite and scream.

If it's for something essential, such as a hospital visit, there are ways of managing distress and working with the autistic person. I will write about that on another occasion.

However, if it is for something non-essential, do you really have to do it? For instance, taking your autistic child to see Elmo live? Who is it really for (and be absolutely, brutally honest with yourself)? Are there ways to make the process easier on them, such as arranging accommodations like ensuring lighting so their fear of the dark doesn't overwhelm them to the point of meltdown (not "tantrum")? Again, I will cover this at some point in the future.

Take food. I used to be what is described as a "picky eater" (many of my issues with food were due to sensory issues, such as texture or taste) and whenever we went out for a meal I would only ever have a plate of chips, much to my parents' despair. And I know why - I feared trying new things in case I didn't like them, and I didn't want to disappoint my parents or want them to have wasted money. I knew it wouldn't be exactly the same as my mum cooked it; again, what if I didn't like it? And sometimes there were several things that sounded quite nice but there were the anxieties I've just listed coupled with there being too much choice and I couldn't decide. So I stayed in my comfort zone of just chips (maybe chicken nuggets if they had those) because my anxieties were just too much. As I've got older I have got better, and going off to university did help a lot with that - it meant that I was much more in control of food and so I could try new things at my own pace and thus wasn't letting down anyone else. These days I eat most things that aren't spicy (except celery and peppers). My husband has been amazingly patient with me on this - I used to hate mushrooms; he loves them. Not long after we started going out, I decided I wanted to try them, but I knew I had to be in the right place mentally, so he would put them in food but in pieces big enough that I could pick out if I changed my mind. It took about 2 or 3 years of this before I was finally able to do this but I did it. This was something I wanted to do and he let me lead him, let me set the pace, and never shamed or guilt-tripped me if I couldn't go through with it. Thank you so, so much for that, Gideon.

It is so, so important that wherever possible, pushing the boundaries of our comfort zone is led by us and is not imposed on us from outside, especially if they are non-essential. That can actually cause us more stress and make us less likely and able to step out of our comfort zone.

And remember that we have it for a reason, and if we say we need to stay in it, especially if tired, stressed, overwhelmed, etc, respect that.

"In the Zone" (Gideon, Jenna)
Earlier this month I talked about autistic hyperfocus in H is for Hyperfocus, and I'm linking it here because it is relevant. The phrase "in the zone" essentially means being hyperfocused, efficient and highly productive, with potential distractions not affecting the person who is In The Zone. The quality and quantity of things that can be produced (both material and otherwise) when someone is "in the zone" can be pretty phenomenal, especially for autistics when our Hyperfocus mode has been engaged! On more than one occasion at university I've bashed out an entire good-quality 3,000-word essay in a few hours, and sometimes when I'm writing fiction I've produced 4-5,000 words in four hours!

With the Judge Rotenberg Center petition, Kieran and I spent a solid 8 hours working on it, discussing it over Facebook Messenger (he's in the north east of England, I'm in the south west), researching weighty articles and documents in order to maximise its impact, tweaking it so the wording was just right, with minimal distractions affecting us because our hyperfocus had kicked in and we were In The Zone. And we were very pleased with the outcome of that because it meant that by the end of the session, we had something we were confident in. (For the record, in the last 5 or 6 hours, the number of signatures has rocketed from around 66,000 to just shy of 265,000!!!) If you have yet to do so, please sign the petition by clicking here, and if you have signed, please do share it with as many people as possible because it is a barbaric, inhumane practice that has no place in society and has been labelled as torture by the UN.

Being In The Zone can bring enormous benefits (as long as it isn't harmful) and that should be accepted and welcomed as a positive aspect of being autistic. Embrace it!

Autism Acceptance Month 2018 Day 26: Y is for Youth

BSL: youth

Y is for Youth

Thanks to Bob, Kyly and Amanda for this word (or a variation of it)!

Young autistic people are the future of the autistic community and the world's relationship to autism so autism acceptance is essential for this. This is one of the big reasons we activists and advocates do what we do - obviously to make the world better, more accessible and more accepting for us but also for future generations. We have struggled and continue to struggle so much, but we don't want to and neither should other autistics. It can be an extremely difficult task, negotiating your way through a world you don't understand, that overwhelms and doesn't accept you, that marks you out as different and thus "bad". Nobody should have to suffer that. We strive to make the world better for young autistics and those who have yet to enter the world, and try to make it accepting for and of them.

In some ways, the world is better for young autistic people than it was when my and older generations were their age. As I mentioned in K is for Knowledge, much more is known and understood about autism than when we were children, which means more children are getting identified as autistic at a younger age, and if appropriate supports and services are made available, they should have a better time. Early identification, with the right guidance and accurate information, can enable someone to understand themselves and their relationship with the world much younger and thus be more confident in who they are. Not being diagnosed can be harmful, as I discovered (the hard way).

Another aspect of autism acceptance comes from NT peers. If NT children (and adults, but I'm specifically talking about youth today) are encouraged in accepting autism as a natural part of humanity, and not allowed or encouraged to think or behave cruelly about autistics - so any bullying is nipped in the bud with no tolerance of it - autistics will be much more included and accepted in society. And instilling that when people are young children is essential for a better, accepting society. We need to promote acceptance in our young people, NT and autistic, for a better world.

It physically hurts to see the plethora of posts on Facebook, forums, blogs and so on about a young autistic person struggling because they know they're different (and other children have picked up on this and make things difficult for them because of it) but not always knowing why, or they/their parents struggling to get a formal diagnosis or even an assessment because they don't fit old stereotypes.

Then there are other autistic young people who do have a diagnosis who face constant bullying, who have been made to feel lesser, defective, broken, because of their neurology. Who are known to be autistic and have that used against them. This is NOT COOL.

And both of these scenarios are awful because it is one of the big reasons for why so many autistics have significant and pervasive mental-health problems. I was one of those. I was one of those undiagnosed autistic teenagers that felt lesser, strange, broken. I was one of those undiagnosed autistic teenagers hiding in corners, severely depressed and highly anxious, cutting her arms up late at night because she didn't understand herself, how her brain worked, why she struggled or why others targeted her. And I see this story and variations on it play out countless times.

Because autism acceptance is starting to grow and expand, I have a great deal of hope for the future, for the next generations of autistics. There is a portion of the autism community that works on awareness over acceptance, fear, rejection of autism, imposition of NT norms and a degree of self-martyrdom by family members of autistics, and this is dangerous for these autistic youths, but people are starting to fight back more and more against this harmful ideology. This is why we must strive for acceptance.

With autism acceptance I see young people embracing their identity as Autistic people, confident in who they are and how they perceive the world. They are not ashamed of their neurology. I want to see that more and more. I want the future to consist of everyone accepting neurodiversity, of everyone being informed and knowledgeable, of everyone knowing and understanding the importance of making accommodations for us and being happy and willing to do so, and not even needing to be asked. I see it most commonly (although not exclusively) with children whose parents are autistic. The son of one of my friends (both autistic) recently went to school on World Book Day dressed as "Autistic" because they accept and embrace his neurology. We are working for a world where this is the norm, where we are accepted, where all autistic young people can feel as confident and comfortable in their Autistic identities as this young man. Acceptance means our young people being Autistic Positive and their NT peers accepting and including them for who they are.

I dream of a future where being autistic is not a one-way ticket to years of bullying and long-term menttal health difficulties, of a future where autistic youths can grow up confident in and unashamed of their neurology and identity, embracing it, a future where everyone accepts them for who they are and accommodates them without batting an eyelid. I dream of a future where they are Autistic Positive.

Autism Acceptance Month 2018 Day 25: X is for Xenagogue

BSL: foreign + country + guide (not the "conduct" or Exeter Deaf Academy videos - the ERADE one is the sign for a dog lead)

X is for Xenagogue

Shoutout to my friend Julie for the link to X words!

A xenagogue is someone whose job is to guide people in a foreign place, and I've chosen this word because autistic adults can fill this role to parents who are new to the autism world; it is an essential role and one of the keys to autism acceptance, both for the autistic individual and wider society.

So first of all, welcome! Welcome to our world, our language, our culture!

I have said in previous posts, particularly in E is for Experience, that autistic adults are an invaluable resource when it comes to navigating the autism world. For the neurotypical visitor, especially one who has only just arrived, it can seem baffling and confusing, a different language they do not yet understand or speak, different cultural conventions, unfamiliar services and resources, an overload of information that makes little to no sense to the outsider and the uninitiated.

There is so much out there to navigate, and a lot of it is conflicting, so much is from harmful sources, so much telling you that you need to "battle" and "defeat" autism, that method X or treatment Y will miraculously "cure" autism, that it is this terrible, insidious monster that invades and destroys everything in your and your loved ones' lives, that there is a "normal" (ie. neurotypical) child "trapped" inside this "shell" of autism. And because information and resources are so heavily dominated by clinicians and Warrior Parents™ it is overwhelmingly doom-and-gloom, fear-based, deficit-based and unaccepting.

But that need not be the case! Autistic adults, especially those of us who are also advocates, are here as xenagogues! We can show you:

• There is nothing wrong with being autistic 
• That being autistic is a perfectly natural and acceptable thing
• How to accept neurological variations as equally valid as the NT state
• You can be authentically and happily autistic
• The positives of an autistic brain 
• Our language and culture, in order to help you understand our way 
• All methods of communication
• Helpful things that make life easier and more enjoyable 
• Dangerous things before you get dragged towards them
• How to live and thrive here, autistically 
• Positive role-models who enable autistic children to grow into confident, happy autistic adults, accepting of their identity and comfortable with their place in the world
• Ways of accessing support and accommodations
• And pretty much anything you can think of about an autistic life! (I am always happy to answer just about any question - I spent two years as an occupational therapy student and I'm part of the Deaf community, so it takes a lot to embarrass me! - so just drop me a line.)

We, autistic adults, especially those of us who are advocates, are your guides! We can translate and explain the language used, we can inform you of and explain cultural conventions (because autistic culture really is a thing), we can help you navigate the information about our world, services and resources, we can direct you to what is beneficial and what is harmful. We know the world best because we live it. It is our language, our culture. We are the best resource you have!

Autism Acceptance Month 2018 Day 24: W is for Women

BSL: woman

W is for Women (and girls)

Thank you, Eli and Tammy!

This is an important subject, one to which I am likely to return on other occasions, because autism in women has long been overlooked. There are so many people who still see autism as a "male" thing (not helped by groups like Autism $peaks unnecessarily genderising it through their reasoning behind their choice of blue). I've lost track of the number of times I've been told that I can't possibly be autistic purely because I'm female. Even in 2018. It's one of the reasons I wasn't picked up at a younger age. And that is the story for many others.

In recent years awareness, knowledge and understanding of autism in women has increased, which is brilliant. There's still progress to be made, but things are improving, and I want to acknowledge and recognise that. Now we have the Autism Women's Network, Autism Women's Empowerment Project and Fighting Inequality for Girls on the Spectrum. AWN is US-based; AWE and FIGS are both here in the UK. I would like to get more involved with them in future, when I have the energy. They seem to be doing excellent work and I hope they can grow and become much more prominent in society. Please do support them and check out their websites and Facebook pages.

Accessing autism assessment and diagnosis for females can be more challenging than for males, partly because there do seem to be differences in presentation but also because it is not something that is considered for females as prominently or widely as for males. There are years of misdiagnosis, of focus on mental-health difficulties that are actually symptoms of underlying autism-related issues, unsuitable treatment for the mental illnesses and lack of understanding by professionals of the specific neurology. If you are a female who has only come to the realisation as an adult that you are autistic, accessing an assessment is a real postcode lottery. I am aware that I am lucky, living where I am - there are many areas (both here in the UK and beyond) that do not have adult assessment services. Something I would like to work on in the future is campaigning to ensure that every area in the UK has an adult assessment service (although with the Tories undermining and cutting the NHS left, right and centre that isn't going to happen anytime soon; it will not, however, stop me from trying). Every person who suspects they may be autistic should be able to access an assessment.

More and more women are being diagnosed autistic as adults, and more girls are being identified while they are children. These means that the diagnostic ratio of males to females has shifted from the old figure of 10:1 to a mix ranging from 2:1 to 6:1 depending on which source you look at (not least because a lot of statistics are likely to be garnered from a single country, and each country's diagnostic rates vary). More females being diagnosed is a good thing, because it means they are being picked up and thus getting access to services and supports appropriate for them (rather than things designed for NTs).

It is essential that society is more informed about autism in females and that all recognise and accept that it is not limited to males. too many females have suffered the effects of this lack of understanding and recognition. There is better understanding than there was 5, 10, 20 years ago, and that is something to appreciate, although there are still gaps that need more work in order for them to be closed. Here's to closing the gender gap!

There is a tendency among undiagnosed autistic females to mask and camouflage, to present as NT by copying and mimicking others around them, particularly other girls, in order to avoid being bullied. This has short-term benefits but causes long-term damage. Alternatively, being true to one's autistic self and behaving autistically can lead to a lot of bullying. Trust me on that one - I opted for the latter and paid the price (but I would rather be me than try to mask - it's too exhausting). And when a girl develops an eating disorder, starts self-harming or has other mental illnesses, autism is considered as a possibility far too infrequently. It's no wonder so many of us end up feeling like we are the broken ones! I have struggled thus far to find statistics on the proportion of autistic females with a history of eating disorders and/or self-harm but I anticipate it being extremely high.

And THIS is where autism acceptance plays a crucial role: if autistic behaviours, mannerisms, ways of thinking and so on were accepted as a normal part of the human experience, there would be no need for the suffering that so many of us have dealt with. It would no longer be acceptable for teachers, parents and so on to say things like, "Have you tried changing your behaviour to fit in? Try not do [insert autistic behaviour, thought style, etc] and then the others won't pick on you."

Autism acceptance means a no-tolerance approach to bullying of autistics just for being autistic.

Autism acceptance means not demanding we change our very self in order to satisfy other people and in order to supposedly protect us from the cruelty of others.

Autism acceptance means standing up to and calling out those who tell us to change ourselves and who victim-shame us.

Autism acceptance means making sure women and girls have access to assessments, diagnosis and appropriate support.

Autism acceptance means recognising, not denying, the lived experiences of autistic women and girls; means not telling someone she cannot be autistic just because of her gender.

Accepting your identity as an autistic female can sometimes be more difficult due to gender bias, but it is perfectly possible to do that. Autistic females are becoming more prominent and known about, and are providing excellent examples for the next generation of autistic females. They are fantastic advocates and amazing women, some of whom are personal friends of mine.

Prominent autistic women whose work I recommend:

• Amy Sequenzia
• Carly Fleischmann
• Ann Memmott
• Julia Bascom
• Erin Human 
• Paula Durbin-Westby 
• Jeanette Purkis
• Judy Endow

(I am not including Lydia Brown of Autistic Hoya or Amythest Schaber as they are non-binary; I am also intentionally not including Temple Grandin because although she has made some contributions, many of her beliefs and attitudes are highly problematic and come from a place of limited understanding of the struggles many of us face and from a position of great privilege - I will discuss this dichotomy and the problematic nature of her another time.) I think there are probably others so this list is not comprehensive; these are the ones who come to mind. I will edit this list if I suddenly think of someone else - it wa written rather late at night so brain was not fully functional.

NOS Magazine: 50+ autistic people you should know 

Apologies for the brevity, but the weather today, particularly the fluctuating air pressure, has played absolute havoc with both my joints and my cognitive abilities. Rest assured I will be writing much more on this subject at a later date, including talking about my own experiences as an undiagnosed girl.