Sunday, 29 July 2018

Take The Mask Off: week 1 list of autistic writings

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

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

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

Adriana L. White: #TakeTheMaskOff week 1

AutieFortyAndFAB: Some Thoughts on #TakeTheMaskOff

Autism Education: What is Masking?

Autistic Science Lady: Accepting my Autistic self

Autistic Superhero: Autism Unmasked

Autistic Zebra: What is Masking

Autistic Zebra: More on Masking

Autist Stuff: Why I keep my mask in my pocket

Blogging Astrid: What is Masking

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

Cat Amongst Wolves: What is Masking

Comments From the Pecan Galelry: What is Masking

Eve Reiland: When The Mask Was Donned

Finally Knowing Me: Wasting Energy

Hannah Molesworth: Sky News interview about #TakeTheMaskOff

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

Libby's Autism Blog: What is Masking

Live chat between the 4 campaign launchers

Luciane Hatadani

Peter Wynn: Stop Masking It

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

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

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

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

Monday, 25 June 2018

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

Tackling bullying could help reduce depression in autistic teens

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

Sunday, 17 June 2018

Inaugural Exeter Autistic Pride event!



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

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

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

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








Tuesday, 8 May 2018

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?!

So, nope nope NOPE!

Monday, 30 April 2018

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!

Sunday, 29 April 2018

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

Saturday, 28 April 2018

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

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Autistic Disney

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Autistic Not Weird

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Autistic Self-Advocacy NetworkImage result for autism acceptance

Autistic UK

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Color the World for Autism Acceptance

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Ed Wiley Autism Acceptance Lending Library
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Ellen Notbohm

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Identity-First Autistic

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Jeanette Purkis

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Ollibean

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PACLA (Parenting Autistic Children with Love and Acceptance)

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