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. 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 is 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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PACLA (Parenting Autistic Children with Love and Acceptance)

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Friday, 27 April 2018

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!

Thursday, 26 April 2018

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.