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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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.

Wednesday, 25 April 2018

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!

Tuesday, 24 April 2018

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.

Monday, 23 April 2018

Autism Acceptance Month 2018 Day 23: V is for Victories

BSL: victory

V is for Victories

Thank you, Magda!

Victories occur in all walks of life, and can be big or small. Some may appear small to others but for the person/those who know them they can be huge. They can be deeply personal and affect only one person, or they can have an impact on the wider community. All matter, all are valuable.

The most important thing about victories is that they are the autistic person's. Supposed victories where the person (usually a child) "achieves" something where the sole aim is normalisation and denial or suppression of their autistic nature is not a victory for the autistic person. It is a victory for those seeking to eliminate autistic presentation and thus systemic ableism.

True victories are those that are wanted by the person achieving them. Making eye contact is one that could go either way - is it the parent, teacher or therapist (most likely ABA) pushing the matter or is it the autistic person genuinely wanting it ? If it is the former, that is not a real victory, and instead demonstrates only that pressure and compliance training have broken a person's will; if it is the latter, that is then a true victory.

Our victories when it comes to the everyday can sometimes be much more significant and emphatic than those of our neurotypical peers. Some aspects of life are much more challenging for us than for NTs, because the world is not designed for us. For example, many NTs don't think twice about getting on a bus - they just do it. For us, there are what seems like a thousand barriers. Using the bus example, I'm going to detail some of my thinking in the runup to starting secondary school just before I turned 12, as I would be getting the bus there and back, on my own, every day, without knowing anyone. For other people, it was exciting; for me it was terrifying.
  • What if the bus is early and I miss it? That can throw out the rest of the day. When is the next one? What if that doesn't come?
  • What if the bus is late or doesn't come and I end up being late? Again, that's the rest of the day thrown out, filled with a long list of adverse effects resulting from being late.
  • Have I got the right money for the fare? What if the bus driver doesn't have the right change? What do I do?
  • Is my bus pass out-of-date? Have I misread it?
  • Am I expected to make eye-contact with the bus driver?
  • Will I cope with all the noises of the bus and passengers?
  • What if someone's eating something I can't bear the smell of? What if the bus is too smelly?
  • Will I miss my stop? What if I don't press the driver-alert button in time? What if the driver ignores it and goes past my stop?
  • What if I leave something on the bus? Even if it's not vital, how will I get it back?
  • If someone sits next to me, am I expected to make conversation? What do I say? Do I acknowledge them or ignore them? How do I make my need to get off at my stop known to them if I am on the window side of the seat? What is the polite but firm way of doing so?
  • Is it socially acceptable if I put my hands over my ears to block out the noise? If it isn't, how do I cope?
  • And a hundred other things.
But I did it. On the second day the bus (the 8:14 one) was really late and I didn't get to school in time. I didn't know the procedure for late arrivals and I was utterly terrified that I would be in serious trouble. I remember being in floods of tears when I found one of my teachers, who looked after me. After that I got the 7:38 bus (most people got the 7:52 one but I was so terrified of being late that I wanted to make extra sure that I wouldn't be, plus the 7:38 bus was a lot quieter). Every day I still struggled with the above list of anxieties. Even after 6 1/2 years. For me, every time I got on that bus and made it to school in one piece was a massive victory, whereas for the NTs, it was not something that required much thought. I was aware of that disparity, although at the time I did not understand why it was.

This is just one example of many I could give. Paying a bill (although pretty much all of ours are on direct debit because it's just more practical), doing the food shop, having a shower - all of these can pose real challenges to autistics. And accomplishing these may not seem like much to many NTs, but for us it's a real, substantial victory, especially if we have problems with executive functioning; it can often take me a good hour of faffing about before I actually get around to putting the water on. I haven't quite got to the bottom of why (doing so would be another victory!) although I suspect there is a degree of my physical disabilities causing problems (not entirely - it's always something I've faffed about over).

A significant victory I will touch on here, and will likely post about in more detail in future, concerns my history of self-harm. At one point, when I was 16-19, just going 24 hours without doing it was a massive victory. Now, I have gone eleven whole years without doing so! For so long that was an inconceivable concept.

One of the biggest victories any autistic person can have is acceptance of their autistic neurology. And that's a huge one, especially when society tells us that they're wrong, broken, damaged, etc. Pushing back against that pervasive narrative, accepting yourself (and others accepting you) for who you are is a long, hard, often painful process. Don't underestimate or minimise that one! Accepting your autistic self, the way you are (and recognising that you may have some difficulties that others do not), is essential for your wellbeing. I have found that it makes me much more confident in advocating for accommodations and being firm about needs and access requirements.

In the longer-term, victories are occurring all over the world in order to make it better and more accessible, inclusive and accommodating. France is finally making progress with its attitudes towards autism support. Shops in the UK are beginning to hold "autism hours" where the shop is much quieter, with reduced lighting and less bustle (I'm not sure yet how good or effective these are). Parents are beginning to realise how valuable autistic adults are in negotiating the world of autism; more on that in X is for Xenagogue. More are coming to understand that ABA is not the only option and that it can be incredibly damaging (although there is still a long way to go on that one). As I type this sentence the petition against the Judge Rotenberg Center's practice of electric shocks for behaviour modification is nearing 50,000 signatures, over 40,000 of which have come in the last few days! It's not a full victory yet and won't be until this barbaric practice has been ended, but the way in which we have come together across the autistic community is a victory as well.

Life goals vary from person to person, autistic and NT. For some, it is getting a PhD; for others it is getting on a bus and making it to their destination without having a meltdown. Both are equally significant and matter just as much. Those aiming for the former should not belittle those aiming for the latter. All victories matter.

I may well return to this subject at a later date but I am tired and I would like to finish by listing some of the victories in my own life thus far that matter most to me:
  • passing my driving test
  • getting the bus to and from school every day
  • getting an assessment for, and then diagnosis of, autism, after several years of trying
  • setting up this blog and its corresponding Facebook page
  • returning to university
  • achieving my BA and then my MA
  • having a shower/self-care when the fatigue is bad
  • going to a project volunteer open day last Friday when I had only had 2 1/2 hours' sleep
  • attending events and social gatherings where I do not know anyone
  • living on my own
  • going somewhere I do not know
  • organising an entire wedding in 7 months
  • initiating volunteer work
  • not self-harming
  • getting the Judge Rotenberg petition going
  • not attempting suicide when I was 17
  • stopping self-harming.

Sunday, 22 April 2018

Autism Acceptance Month 2018 Day 22: U is for Unique

BSL: alone, different, individual

U is for Unique

Thank you, Daisy!

It's an oft-uttered phrase in the autism community that "Once you've met one autistic/person with autism, you've met one autistic/person with autism", so much so that it's become a bit of a cliché.

But there is a lot of truth to it! We are human beings, the same as NTs, we have unique DNA (unless we're identical twins), and everyone is different (even identical twins in terms of personality). Logically it makes sense that every autistic, like every NT, is different. But people do like to put us autistics in a very restrictive set of boxes, and then when we don't fit, they insist that we cannot possibly be autistic because [insert reason here]. I have been told I cannot be autistic because I: am female, am speaking, am educated (I have a Master's degree), have a degree in English Literature (BA)/Creative Writing (MA), am married (or, previously, have a boyfriend/am engaged), was educated in a mainstream school, was diagnosed as an adult, have friends, don't have stereotypical autistic interests... The list goes on. Oh, and apparently I "don't look autistic" and the one that made me cackle most is that I'm "too pretty to be autistic". Yes, really. Sorry, guys - I'm definitely autistic! One of the purposes of this blog (among many) is to add my unique perspective to the autism world, to demonstrate that we are not all computer geeks (thanks for stereotyping me, Dad... No, I do not know anywhere near enough about computers to fix yours remotely from 200 miles away!)

And because we are all unique, every one of us has our own perspective on the world, our own abilities, our own talents and gifts, our own personality; we are all different. We are a diverse group of people, and just because we share a neurology, it does not mean we are all carbon copies of each other. We do not expect NTs to be identical and we know they are not (heck, we're very aware that animals have diverse personalities!); why then do some people expect all autistics to be the same? Perhaps it is to do with pathologisation and restrictive diagnostic criteria. Perhaps it is to do with the fact that there are certain traits that we have in common that NTs do not share. Perhaps it is to do with the human penchant for categorising everything. It's something I would be interested in exploring at some point, perhaps if/when I turn this series of blog posts into a book about autism acceptance. The more I contemplate this, the more I want to do it. As though I don't have enough to do...!

Autistics exist in all walks of life. Rich, poor, middle-class. White, black, Asian, Maori, Indian, Bulgarian, Chilean, Ghanaian... Male, female, trans, non-binary. Catholic, Protestant, Muslim, Jewish, Baha'i, agnostic, atheist. Actor, musician, engineer, astrophysicist, writer, microbiologist, cartographer, journalist... Parent, child, sibling, cousin, neighbour... Hearing, Deaf, blind, able-bodied... Communist, socialist, centrist, centre-right, far right.

Our passionate interests cover as many things as their are existing in the world. Some are conventional, such as computers, whereas others are incredibly niche. All should be valued. We should all be valued.

I am a unique person. There is nobody in the world, never has been, never will be, identical to me. There are, have been and will be others like me in some respects - married, bisexual, Catholic, writer, female, Burnley FC supporter, hearing signer - but nobody will ever be exactly like me. Nobody will have my unique perspective on the world. Nobody will be exactly like you, or have your unique perspective on the world.

People often forget that everyone is unique when it comes to autism in a way that they don't seem to with NTs. We are as diverse as NTs. Let's celebrate our uniqueness! It makes us who we are!

Saturday, 21 April 2018

Autism Acceptance Month 2018 Day 21: T is for Technology

BSL: technology

T is for Technology

First of all, many of the brains behind the technology we use are or were thought to be autistic. Without autistic contributions to this field technology would be very different! And their being autistic will have played a significant role in their skills, abilities, thinking and so on. That's definitely worth celebrating!

Quick reminder that we're not all tech geeks. As my friends and family will happily tell you, I'm one of the least technologically-minded people of my generation; I only finally got a smartphone 4 months ago and that was primarily because my old laptop went away for repair for rather a long time before it turned out they couldn't get the part required because they didn't make it any more. As part of autism acceptance, let's halt the spread of that stereotype and remind people that we're a diverse group of people with as broad a spectrum of skills and abilities as NTs.

The other aspect of this subject is the role technology plays in autistics' lives; the combination of technology and social media, which I talked about yesterday in S is for Social Media, has revolutionised our ability to connect and communicate like never before. Technology has allowed us to link up, interact, support each other, organise, reach parents of autistic children, and so on.

Technology has also enabled many autistics to express themselves far better. For those who are non-speaking, technology has enabled them to find their voice through typing in particular. This is why it is so insulting that a lack of speech causes many to assume severe intellectual disability; as I have mentioned before, the ability to speak has traditionally been associated with intelligence and used as a marker of it. Computers, tablets and other communication devices allow much better and freer expression than things like PECS. Intellectual disability and incompetence should never be presumed anyway, and technology developments have emphatically demonstrated this.

Even for those of us who do speak, we have times (usually when we are tired, stressed, experiencing sensory overload, for example) when we can't. I've always felt more comfortable communicating through the written word than speech, and I can't always speak (or write by hand).

I mentioned recently in L is for Love that there is a massive emphasis on speech above all, and I find that parents and professionals get so focused on this that other avenues of communication are overlooked, pushed aside, considered inferior. Don't! Don't see it as a last resort, as lesser! Give your autistic child as many communication options as possible, as early as possible. Technology will benefit them! Having a means of communication is essential and if technology aids that, it will make everyone's lives better.

In addition to communication and connection, technology has given us the opportunity to develop businesses, to provide better information, to access support, make information more accessible. One of my friends works for a company called Brain in Hand, which enables people to live the lives they want. Now I have a smartphone it is something I am considering as an option.

And it would be terribly remiss of me to not mention the advances made in mobility technology to enable the freedom so many of us multiply-disabled autistics enjoy, whether it is a manual self-propelled rigid-frame wheelchair (which is what I use), a power chair or other aids. They are our freedom.

Yes, you do need to be careful with the internet and so on, but technology has massively improved the lives of many autistics. Embrace technology-assisted communication, embrace its ability to connect the autistic and autism communities, embrace how much it has benefitted us. And embrace the contribution of autistics towards its creation and development!

Sorry this is short but I am exhausted. It took me three attempts to write "provide" instead of the "prodive" that my fingers kept typing.

I am considering, once this series of posts is over, looking into developing it into a full book on autism acceptance. The thought only came to me this morning, but we need more things about autism acceptance out there!


Friday, 20 April 2018

Autism Acceptance Month 2018 Day 20: S is for Social Media

BSL: gossip/chatter (bottom row, middle clip) + media

S is for Social Media

This one links in nicely with C is for Community, F is for Friendships, J is for Justice and tomorrow's T is for Technology.

You often hear people bemoaning the alleged detrimental effect social media has had on our communication skills, our relationships, our mental health, and so on, and you do have to be careful because that can happen, especially because social media can give a skewed presentation of people's lives. There are plenty of things I don't post about on Facebook and I'm sure that's applicable to most people.

But social media can also be an exceptional tool and massively beneficial, which is what I'm going to write about today, particularly focusing on its role within the autistic community and the striving towards autism acceptance.

Before social media (Facebook, Twitter, YouTube, Tumblr, Reddit, Instagram, etc) existed, it was more difficult to stay in touch with as many people. I personally only use Facebook; I've considered Twitter (as Autistic on Wheels) but I find it moves too fast, there can be too much information, too many responses and rapid reactions, and it's too overwhelming for me. I may experiment with it in the future, I may not. Facebook is a great way for maintaining contact with people you might otherwise not; I have on my personal Fb a number of people I was at secondary, and even a few at primary, school with. I'm a writer; people and their lives fascinate and intrigue me. And we live in a world where people converge and then part ways; wanting to stay in contact in such a fast-paced world, especially when you meet so many amazing people, can be challenging, whether your life is busy with activities from dawn till dusk, or it's rather more slow-paced. My health issues, particularly that fatigue- and brain-fog-related aspects, mean I am at home a lot of the time, so it's harder to stay connected with the wider world and not feel lonely and isolated. Social media enables me to stay connected and feel involved in the world, even on the bad days when I can barely manage to make a cup of tea. I can chat with friends on Messenger, I can stay informed about what is going on in people's lives, I can keep up-to-date on events and I can do "armchair activism" (a term often dripping with derision when said by many, but it's increasingly powerful and much more accessible for the marginalised of society than going out on the streets). One of my absolute best friends lives in Iowa (we originally met through a Catholic community on LiveJournal; since connecting there we've visited each other 3 times, and her parents have informally adopted me as a third daughter). She's 6 hours behind and several thousand miles away from me, but we talk often and love each other as sisters.

It was also a lot harder to connect with people you didn't know in real life, face to face, even if they were members of the same community as you, such as the autistic or Deaf communities, members of whom are disparate, dispersed throughout the world mixed in with neurotypical or hearing people. I do sometimes accept Facebook friend requests from people I've not met in person, but we do have to have interacted on some level in groups and so on prior to connecting directly - I don't just accept requests from random people! I have quite a few people on my Facebook friends list who I have not met in person, although hopefully eventually we will meet. I am planning to meet Ann M in person later this year when she comes down to the West Country (and introduce her to the delights of the Lyme Bay Winery), and I also hope to meet many of my fellow activists.

Social media has revolutionised how disparate communities come together and connect. In the past, my contact with other autistics (what some of us call our "neurosiblings" - I quite like that term) would have been largely restricted to those who lived locally to me, with perhaps one or two from slightly further afield, perhaps a couple of counties over. Now, though, we can connect from all over the globe! I regularly interact with autistics in many different countries, including Iceland, Brazil, Singapore, the Middle East and others, and am Facebook-friends (and interact directly) with autistics in Canada, the US, Sweden, Australia, New Zealand and Ireland. Possibly one or two other places as well. And I have found some amazing, fantastic people in the autistic community, people I would never have met if it wasn't for social media. Ditto for several allies who have become friends.

It's also a great way for autistics who use alternative communication methods and high support needs to be part of the community in a way that they might not otherwise be able to, and for parents/family members and autistics to come together and advise, inform and support. That said, there are many toxic groups and pages out there, so you have to be extremely careful where you go, because of the Autism Parents™. It's absolutely fine (and healthy!) to be highly selective about where you spend your time and which pages you follow. When I come across an autism page, the first things I do are look at the language use (if it's solely person-first language it puts me on alert, as it's unlikely to be run by actual autistics) and, most importantly, which pages are Liked by that page. If there's anything relating to Autism $peaks, Light It Up Blue, TACA or other cure or pseudoscience organisations/people, that's a big Nope.

And social media isn't good for just meeting other autistics; it can be a great way to converge, organise, plan, campaign and spread our activism. Longer-term followers of AoW will know that I was one of the key players in the Not Locked In counter-campaign to Caudwell Children's Locked In For Autism stunt, which took off rapidly and successfully last year. That came about solely through social media - we met through a UK autistic-and-neurodiversity group, an article about one of the events came up, and autistic hyperfocus went into overdrive! We mobilised on the Thursday night, and by Friday morning had a discussion group on Facebook, a Facebook page, the Twitter profile was reactivated (there were previous unsuccessful efforts to end LIFA) and a petition calling on Tesco to withdraw. The other two handled the social media and press side of things while I hammered out goodness knows how many emails, and by the Monday afternoon Tesco had pulled out. All this was done through social media. More recently, I've been one of the main three organisers of the petition against the Judge Rotenberg Center, which has in the last few days, thanks to ASAN's involvement, rocketed from around 4,000 signatures to over 14,200 when I checked a few minutes ago! Thank you everyone and keep signing and sharing it! Let's END this torture! Again, all this came about through social media, through a group of autistic activists that I'm a member of - one of our members was at the ADAPT protest outside Scott Gottlieb's house and posted about it, I enquired about whether there was a petition or anything that those of us outside the US could sign or otherwise show support for, and within 48 hours, Cal, Kieran and myself had finalised the petition and activated it.

Social media has enabled us to come together and connect, to support each other, to discuss and spread ideas and campaigns, to work together, to form a network across national borders and oceans, and create a distinct community that was previously diffuse and fragmented. And for that I am overwhelmingly grateful. Social media has made a massive positive difference in the lives of many autistics around the world.

Apologies if any of this lacks coherence (please do let me know and I will endeavour to edit it) but circumstances conspired to ensure that I only got about two and a half hours' sleep last night, and I spent several hours earlier today at an event for increasing Deaf people's participation in physical activity in Devon that I'm looking at getting involved with, so this has taken me rather longer to write than originally anticipated. The lack of sleep means it's taking me twice as long to think coherently and then type accurately (tiredness always exacerbates the dyslexia symptoms), and the event earlier means I'm still partially thinking in another language (BSL)!

Thursday, 19 April 2018

Autism Acceptance Month 2018 Day 19: R is for Resilience

BSL: endurance (right-hand sign), firm (right-hand sign)

R is for Resilience

Thanks to Kyly for this one!

In a world that is not set up for autistics, it can be difficult to manoeuvre day-to-day, so a lot of us have developed a good amount of resilience. We've had to.

So often, the world can be too loud, too bright, too close, too confusing, too overwhelming, and just getting through the day can feel like an impossible battle. It throws an inordinate amount of hassle and stress at us and we are expected to take it, are expected to switch off our autistic responses as though they were a light switch (hint: it doesn't work that way). It is a lot harder for us to negotiate than it is for NTs. And we don't always cope, I'll be the first to admit that. I often have no idea how I manage, although as I said yesterday, quiet time is massively beneficial. Knowing and being able to identify triggers can help, but they can't always be avoided, and the same can be said for demands, expectations, activities, etc. That quiet time makes it easier to deal with the busy parts of the day.

Getting through a school day was difficult, especially secondary school. I'm thankful that my primary school had huge windows so there was a lot of natural daylight pourng in, which meant less time spent under fluorescent lights, but they still irritated me (I have Irlen Syndrome, a light-sensitivity condition, so severely I managed to break the diagnostic scale...!) On top of that, the constant noise and social expectations could be unbearable sometimes, and I loved reading time, because it was so wonderfully quiet and peaceful (this is before the Numeracy and Literacy Hours were introduced in UK primary schools). Sitting at the front of the classroom helped - it was easier to focus on the board (especially in Year 6 (the academic year in which you turn 11) when I started to become shortsighted) and the chatter of the other pupils was behind me rather than around me, which made it easier to concentrate.

Secondary school was where the social difficulties became painfully obvious. I barely coped, I'll be honest - not least because I didn't know I was autistic at the time - and I spent break and lunchtimes out of the classroom, away from the chatter and the social exclusion, instead finding a quiet corner with a book or notebook, or going to a lunchtime club. I struggled. I struggled horribly. To this day I'm still not sure how I made it through, how I'm still here. Sometimes you keep going solely because you have to. With me I think part of it was sheer bloody-mindedness and autistic stubbornness! That and some amazing friends, especially Carol H and Caroline B (now T).

So many other autistics have similar stories.

We fight on, we keep going, we keep strong even when we don't feel it or want to.

And as adults, it continues. Difficulty finding jobs because the process is skewed against us, mental-health problems, PTSD from being put through "interventions" like ABA, loneliness, social exclusion, difficulty with the world around us.

Another aspect of resilience comes from dealing with people online, particularly Autism Parents™, antivaxxers, curebies and so on. I've not yet encountered that many, although there have been the odd one commenting on AoW. I'm sure it will come! I take my hat off to people like Ryan, who encounter them on a frequent basis. I think to an extent you have to force yourself to not let it bother you - I know I've had to as I tend to feel everything very intensely, and at first the attacks hurt deeply and feel extremely personal, but I've reinforced my mental and emotional armour. We're a tough, stubborn sort.

[Side note: If you come on AoW and defend ABA, play the Not Like My Child card or go all Autism Warrior/Martyr Parent™ on me, you don't upset, hurt or intimidate me, I don't lose sleep over you - I've got too much resilience these days.]

And so today I want to celebrate our resilience, our ability to not be crushed and utterly destroyed by a hostile world. I want to celebrate our survival, our internal strength (even when we don't feel very strong), our resilience. Shoutouts to my friends, and fellow activists and advocates, all of whom have amazing resilience! Ryan H, Ann M, Dallas, Amalena, Kieran R, Cal M, Amy S, Paula D-W, Hannah Q, Garrett, Alexis R, Monique C, Michelle Mc, John G, Alex K, Jeanette P and anyone I've accidentally missed.

You guys are brilliant and I love you all; keep going!

Wednesday, 18 April 2018

Autism Acceptance Month 2018 Day 18: Q is for Quiet

BSL: quiet (right and bottom)

Q is for Quiet

Thank you to Helen and Alison for this one. There were several good suggestions but I was quite taken by the idea of this one because it's such an important aspect of autistic life. As I write this, the only sound I can hear is the tumble dryer (I'd like to put the laundry outside because it's a glorious day but the wind is so wild that I'd end up having to repeatedly chase the laundry across the communal lawns, and I've got better things to use my limited energy on). Before I put the tumble dryer on, the only sounds I could hear were birdsong and the occasional car or train. It's wonderful.

I like quiet. I need quiet. The same is true for pretty much every autistic I've ever come across, because the world is so often too loud and too overwhelming, too demanding. Quiet time enables us to decompress, to process, to calm down, to relax. If we are not given the opportunity to do this, we are more at risk of meltdowns, shutdowns and other problems. Quiet time is essential.

A quiet environment makes it much easier for me to think and process, because I don't have external auditory input distracting me or interrupting my train of thought (once my attention is away from that train of thought, it shoots out of the station faster than a Japanese bullet train, making it impossible for me to get back on it). When I study, I can't have the TV or songs on because I will end up inserting words from there into my work. Learned that the hard way with some Year 8 (age 13) history homework, which I handed in completely unaware that I'd written out two lines from Simon & Garfunkel's Sound of Silence in the midst of something about the British Civil War! Instrumental music is better but it can still distract me because I get caught up in the rhythms, tunes, etc and don't get on with my work. I find I produce my best work when I don't have other sounds cutting through my concentration. "Exam conditions" (no talking, no music, silence) are actually my favourite way of working!

I can be quite a social person. I like hanging out with friends, going ceilidh-dancing, roleplaying, doing wheelchair badminton and so on. Being around friends and doing things is fun, and it's good to get out and about. Never socialising can be pretty detrimental for me.

But this has limits. There is only so much socialising I can do, particularly if it's somewhere that has a lot going on, background noises, multiple conversations, people bustling about and so on, before it starts to get draining. It uses up a substantial quantity of my energy to concentrate, and the longer it goes on, the less I can cope, the harder it is to tune out background noises, the harder it is to ignore every tiny movement that catches my eye. It's taken a long time, but I'm now reasonably good at recognising my limits and the warning signs before sensory overload kicks in and triggers a meltdown, allowing me to take my leave and head off before I get overwhelmed.

And then quiet. Peaceful, blissful quiet. No external input, nothing to process, just calm and silence. Nothing bombarding my senses, nothing making any kind of demand of my body or my brain. It is one of the most delightful, soothing feelings you can experience.

It is essential that our need for quiet is respected, that "Just five minutes more" can be too long and demand too much of us. When we express our need to leave imminently, that needs to be heard and acquiesced to. Forcing us to stay in a situation that is overwhelming us is torture and unfair, and the fallout will horrible, for both you and us.

Venues that have quiet spaces are fantastic and there need to be many more of them. It can make all the difference between enjoying something or not, and can determine whether or not we even attend in the first place. It's something I often check before going somewhere because I know how much I need that silence at times.

Having the option of retreating to a quiet space is essential. Quiet time enables us to recalibrate, recharge, be ready and willing to engage with the world again.

Autism acceptance includes accepting that we need quiet time and that it is beneficial for us, and providing us with that space to allow us to recharge. When people do this, it makes all the difference in the world, and makes life better for everyone.

A useful analogy is batteries: the longer they are in use and demand is placed upon them, the less power and charge they have, and thus the less they are capable of. After a period of time of having no demands placed on them and being in a situation where they can be recharged, they return to capacity and can work again.


Tuesday, 17 April 2018

Autism Acceptance Month 2018 Day 17: P is for Passionate Interests

BSL: excited + interest/focus (bottom left)

P is for Passionate Interests

Clinically referred to as "special interests" or "obsessions", autistics are increasingly trying to change the language around this term, because it implies that there is something wrong with the interest, or at least the level of intensity of it, especially if it is considered not age- or gender-appropriate. It is true that the intensity level tends to be much higher for autistics than NTs, but that does not necessarily mean it is unhealthy.

Over the years I have had the following passionate interests (some past, some ongoing); here is the non-exhaustive list in alphabetical order:
  • The Amish and other Anabaptist denominations
  • Autism
  • Canals
  • Cats
  • Cults and fundamentalist Christianity (research for a novel I'm working on)
  • D&D (not 4th edition, though!) 
  • ER (TV programme)
  • Football (soccer for you non-Brits!) statistics
  • Harry Potter
  • HazChem Code (age 6)
  • NCIS (TV programme)
  • Politics
  • Social justice
  • Tolkien's writing
I'm fairly sure I've had many other short-term passionate interests, but most of the ones listed above have stuck with me long-term.

Sometimes a passionate interest is dangerous (eg. setting fire to things) and on these occasions some intervention is required, to divert it to something safe. But on the whole, interests should not be prevented, restricted or used as a means of power over the autistic person as they so often are. If you wouldn't do it to a neurotypical person, why would it be OK to do it to an autistic?

[Answer: it wouldn't be.]

And forget all the stuff about "age-appropriate interest" or "gender-appropriate interest". Who gets to decide that?! So what if someone is 56 and passionate about My Little Pony? So what if someone is 5 and can recite the periodic table including chemical weights and so on? What society deems age- or gender-appropriate is completely arbitrary and dictated by the people with the social power, and they tend to be the "cool" crowd, which is not something many of us autistics have been a part of. And it frequently shifts anyway, so what's "cool" one week swiftly becomes relegated to the fad bin and anyone still going along with it is seen as off-the-pace and uncool.

Screw them! Embrace and celebrate that passionate interest! Nurture your, your family member, friend or partner's special interest! It could lead down all kinds of avenues in future, and even if it doesn't, so what? If something holds a person's interest, if it's something they're passionate about, if it gives them joy and pleasure, cool! I'm all for that. The world needs more passion and love. And it would be incredibly boring if everyone was into the same things. I love seeing the diversity of my neurosiblings' interests, I love it when they infodump (I love learning new stuff about pretty much anything), I love sharing their excitement and passion, I love seeing where their interests and passions take them. I wouldn't have it any other way.

There is something amazing about finding something you have a passion for and it's an incredible feeling. I get an overwhelming sense of pleasure, happiness and energy from it. It makes me more able to engage with the outside world, it gives me a means of relating to things in a way I may not otherwise be able to (as my husband and a number of close friends will tell you, I will link absolutely everything possible to Harry Potter!), I've made some amazing friends through some of my interests, had some fantastic experiences and these interests have done wonders for my mental health, particularly in the dark days (see in particular my post from last year, Harry Potter, autism and me), and have made life so much better.

Find something you love and are passionate about, and enjoy it. Don't pay attention to people who try to shame you by insisting that it's not "cool", or "age-appropriate" or "gender-appropriate" - they're such arbitrary markers anyway, changing from culture to culture, week to week, clinician to clinician, and so on. Everyone is different and unique, everyone has their interests, and people should respect and accept that.

My husband isn't particularly into Harry Potter, yet he accepts that it's one of my long-term passionate interests and is a huge part of my life, and he's watched all the films with me, done the Warner Bros studio tour twice and come with me to see Cursed Child (which he really enjoyed, not least because his background is theatre and performance), and we regularly have long, in-depth discussions about many aspects of it. He does roll his eyes a bit when football comes up because he really isn't into that (which I respect so I try not to bore him with it, and will only put a televised match on if it's a Burnley (my team) game, and catch up with Match of the Day and so on when he isn't in)! And my husband has his own interests, some of which I'm really not into but others of which have intrigued me and so I've expanded my own knowledge base and learned about his interests.

Celebrate the interest and the passion, no matter how obscure! They're part of what makes someone who they are.

Monday, 16 April 2018

Autism Acceptance Month 2018 Day 16: O is for Out-of-the-Box

BSL: different + perspective (top left and bottom right signs)

O is for Out-of-the-Box


Thank you, Helena! Following our conversation yesterday I opted for this suggestion because it seems appropriate for this month's theme of acceptance. Although I'm generally trying to go for single-word options, this is an exception.

Many people have come across the phrase "thinking outside the box" and its variants, and it is certainly applicable to autistics. The NT majority of the world see things in one particular way, autistics in a different way, presumably because our brains operate differently. Neither is wrong, they are simply different, and can often complement each other. The box in this case is the NT way of thinking because it is the prevailing, majority neurology, considered the conventional and expected way of thinking. While people sometimes criticise us for thinking too rigidly, in too constrained and limited a manner, I think the same can sometimes be said for NTs. There are certain social conventions and perspectives, and people frequently go along with them and don't always realise that there are other angles and perspectives, so their views and input can be limited by the boundaries of the box. Autistics are not necessarily constrained by these conventions and thus can approach something in an entirely new - and sometimes unconventional - way.

This is an incredibly valuable trait and one that should be accepted and welcomed. It enables us to come at things from a different angle, give alternative perspectives, see things in another way. Having people with different approaches and perspectives on things aids understanding and increases the chances of all bases being covered. It's relevant in many diverse scenarios: work or school projects, design, education, academia, hobbies, and ordinary day-to-day life.

Because we are a minority, neurologically speaking, our different perspective can sometimes come as a bit of a surprise to NTs (particularly in the workplace, as so few of us are in paid employment) but it is certainly beneficial!

I have a very visual brain, which is likely to be due to my neurodiversity (autism and dyslexia), and that enables me to come at situations in a visual manner, which is a great complement to those who think in words. Often, I can provide an alternative angle on something, approach a situation from a different angle, one that the NTs around me hadn't even considered, especially if they have become particularly entrenched in conventional approaches.

This ability to think outside of the box is a valuable thing, and should be accepted and embraced.

Sunday, 15 April 2018

Autism Acceptance Month 2018 Day 15: N is for Neurodiversity

BSL: brain (neuro) (bottom signs) + diversity


N is for Neurodiversity


The Dictionary.com definition of neurodiversity reads thus:

"the variation and differences in neurological structure and function that exist among human beings, especially when viewed as being normal and natural rather than pathological:
recognizing autism as an example of neurodiversity."

Autism is part of the neurodiversity paradigm, which recognises that there are different kinds of brain setups. Accepting neurodiversity means accepting people for who they are, how their brains work and not trying to change them to be more "normal" (ie. fit in with the majority of society). Certain interventions, such as ABA, seek to homogenise us, to hide the autism, but they're only ever a surface thing - however NT a person may present, they are still autistic.

It's a normal part of the human species; it's just an alternative operating system. While the majority of the world runs on Windows, neurodiverse people run on Linux (baffling at first to those familiar with the prevailing system, but easy once you know how to work with it).

Neurodiversity means not suppressing autistic/other neurodiverse behaviours. Neurodiversity means not enforcing abritrary rules and demands on us.

Neurodiversity means recognising that we are not broken and do not need to be fixed.

Neurodiversity means being openly autistic/Tourette's/etc in public without having to worry about being mocked, derided, abused or, in the US, being shot by the police.

Neurodiversity means having accommodations in place to enable people to access spaces, events, services, etc. and people happy to accommodate. This includes supports.

Neurodiversity means no discrimination or barriers to employment or education.

Neurodiversity means equal civil rights for neurotypical and neurodiverse people.

Neurodiversity means acceptance as we are, authentically us.


 

Image from https://www.cambridgenetwork.co.uk/news/neurotypical-v-neurodiverse-behaviours-creating-diversity-in7794/ 

On the subject of brains, mine is currently not working very well due to fibro- and ME-related brain fog, so this post is short. I will leave you with several good articles about neurodiversity.

Nick Walker: Neurodiversity

Autism Acceptance Month

The Art of Autism

Harvard Business Review: Neurodiversity as a competitive advantage

Ann's Autism Blog: Autism is a neurodiversity, not a mental health condition

The Autistic Advocate: Why neurodiversity needs self-advocacy