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

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

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

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

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

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

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

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

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

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

Autism Acceptance Month 2018 Day 29: articles on autism acceptance

BSL: article

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

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

A Heart Made Fullmetal Awareness v Acceptance

A Heart Made Fullmetal: Embracing Autism

A Heart Made Fullmetal: To the Autistic Child 

Alex Forshaw: Poisonous Expectations

Alex Forshaw: The Dark Side of Passing

Amy Sequenzia: Celebrating My Life

Amy Sequenzia: Normalcy is an Ableist Concept


Amy Sequenzia: To You, Young Autistic Friend

Amy Sequenzia: Why I don't like awareness

Ann Memmott: Autism Acceptance - my list of positives

Ann Memmott: Autism: Not a mental health condition 

Autistic and Cheerful: Acceptance is vital for good mental health 

Autistic and Cheerful: Acceptance vs Awareness

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

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

Henry Frost: Two Houses

Kieran R: An autistic diagnosis

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

Leah Kelley: In this house we do acceptance

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

Radical Neurodivergence Speaking: Acceptance vs Awareness

Steve Silberman: Why "Autism Awareness" is Not Enough

Unstrange Mind: A is for Autism Acceptance

Autism Acceptance Month 2018 Day 28: Autism Acceptance Memes

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

Amy Sequenzia

 

Autistic Disney



Autistic Not Weird



Autistic Self-Advocacy Network

Autistic UK



Color the World for Autism Acceptance

 



 





Ed Wiley Autism Acceptance Lending Library
 



Ellen Notbohm





Identity-First Autistic



Jeanette Purkis









Ollibean



PACLA (Parenting Autistic Children with Love and Acceptance)



 

Autism Acceptance Month 2018 Day 27: Z is for Zone

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

Z is for Zone

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

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

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

Ask yourself this:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Autism Acceptance Month 2018 Day 26: Y is for Youth

BSL: youth

Y is for Youth

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

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

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

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

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

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

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

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

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

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

Autism Acceptance Month 2018 Day 25: X is for Xenagogue

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

X is for Xenagogue

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

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

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

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

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

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

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

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

Autism Acceptance Month 2018 Day 24: W is for Women

BSL: woman

W is for Women (and girls)

Thank you, Eli and Tammy!

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

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

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

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

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

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

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

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

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

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

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

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

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

Prominent autistic women whose work I recommend:

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

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

NOS Magazine: 50+ autistic people you should know 

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