What Self-Care Means To Me #AutismPositivity2015

By FeministAspie

#AutismPositivity2015

This post has been a frustrating one to start, because at the moment self-care is something I have a lot of feelings about, but it takes so many different forms that I don’t know what to focus on. Self-care varies, because people vary, but here are some ways in which I (at least try to!) practice self-care:

Disregarding “normal”. This might sound obvious, but it’s easier said than done when the neurotypical standards aren’t just present in your own minds, but in the minds of others and in the very fabric of a society not designed to accommodate people like us. This year I’ve had to try and unpack every single “I’m not X enough” standard I have – I mean literally typing out every single one I could think of – and counter them, one by one. I am learning to compare myself to me, six months ago, a year ago, three years ago, but not to my peers, because they’re not me, they’re all their own person, and most of them are neurotypical. This year, I have grown – my experience wasn’t necessarily what I expected, or what was expected of me, or what my friends have experienced, but I have grown.

Special interests. (No, I don’t like the term either, but nobody’s thought of anything better yet…) Escaping the rest of the world, engaging, pacing and spinning around the room and *gasp* not feeling guilty or childish for it. If they can have their big night out, I get to have this.

Accepting online interaction as real, valid interaction. Because it is.

Actually genuinely really being honest. This is a very very VERY recent thing for me, and it’s been brought about for two main reasons. Firstly, to cut a long story short, there is a space where friends are dropping our socially-acceptable masks and talking about our worries and fears and realising we’re actually not alone in them. Secondly, out of necessity, because I haven’t exactly been feeling 100% this week and I needed to have somebody here who understands and can help me out where necessary. I have definitely internalised the idea that if I am still capable of asking for help then I obviously don’t need it and nobody will believe me; I also often fall into the trap of assuming an allistic person probably doesn’t really understand whatever my problem is. Neither of these things are true. Showing vulnerability is hard for me, and this is going to be a slow process, but you’d be surprised by the level of support and empathy that’s there, given the chance – and who knows, you might encourage others to do the same.

Writing notes to myself. This is something I’ve done on-and-off for a couple of years, mostly just on my phone and laptop. I look back over them when I’m feeling useless and pathetic, and they remind me that I’m not.

Lists. For when there’s so many thoughts competing for my attention that I have no idea how to proceed with my day.

Acknowledging invisible strength. That is to say, feeling proud of having done something that scares or overwhelms you even when that’s not noticed because to the neurotypical majority, it’s just normal and everyday. Sometimes, for many of us, that stuff is everyday – and even if I do say so myself, that is really, really brave. Recognising that helps me to recognise when I need to step back and recharge, why I’m feeling crappy and how to fix it (where possible), and how best to prioritise when spoons are low.

Taking things one day at a time. The next couple of months have very scary elements, next year seems impossible, and the future is a dark and terrifying void. But today? I can do today. The chances are I can even do tomorrow.

Original Post: https://feministaspie.wordpress.com/2015/05/15/what-self-care-means-to-me-autismpositivity2015/

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Autistic Academic on Acceptance, Love, and Self-Care #AutismPositivity2015

By Dani Alexis Ryskamp

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Yesterday, I gave the first academic conference presentation of my career: a paper on narratives of cognitive/developmental difference vs “monstrous”/changeling difference in late antiquity and the Middle Ages.*  You can check out the livetweeting from it here.

Overall, the talk went well and seemed to be very well-received.  The Q&A session immediately following was very productive, from my point of view, and I had several people thank and/or congratulate me over the course of the day – not just people who knew it was my first talk and were offering support, but also people I’d never met before who were responding to the content.

And, as has become my norm in any setting where I’m talking about autism, I told them I was autistic.

I always wonder what people think when I disclose in an academic setting.  No doubt some of them think I’m either “surprisingly articulate for an autistic” and/or “so high-functioning” based on the impression they’ve formed of me while I’m talking.  I consider it my duty to give my audience the best work I can provide in the time I have, and I literally prepare for days ahead of time to ensure I can navigate venues smoothly, have sufficient “word power” in my reserve to talk through the allotted time,** and can generally give the best presentation of my work that I can.  My work and my audience deserve no less.

But when people see me in that sort of venue, there are two things they don’t see…

Read the rest of this powerful and important post here: http://autisticacademic.com/2015/05/15/autistic-academic-on-acceptance-love-and-self-care-autismpositivity2015/

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All People Deserve Acceptance, Love, and Self-Care #AutismPositivity2015

By Debra Muzikar

The Art of Autism along with many fellow bloggers around the world is celebrating Autism Positivity today through the Autism Positivity Flash Blog.

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Many Autistic People are participating in the #Walkinred campaign. #ActuallyAutistic people and their friends are encouraged to take selfies in red shoes.

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This Sunday at USC IGM Art Gallery I’m moderating a Neurodiversity panel. I hope all in the Los Angeles area will come out for this event. Not only is there going to be great art and insights, we make new friends at these events. We also demystify autism and other neurodiversities.

Complete Post: http://the-art-of-autism.com/all-people-deserve-acceptance-love-and-self-care-autismpositivity2015%E2%80%B3/

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The Difference A Year Makes #AutismPositivity2015

By Pamela

#AutismPositivity2015I had a meeting with the school execs about O and his transition to grade 9 in September.  As usual, I was anxious.  Would he get edged into the most convenient corner?  Did the funding allow his needs to get met?  Do they even ‘get’ him and all the amazingness that we think he is?

I need not have worried.  The meeting was a success and went beyond my expectations.  And yes, they ‘get’ him alright.  We laughed about his sense of humour, marvelled at his memory for dates and details and the teacher kept saying how bright he is, how much she was going to miss him.  They understand that his bounciness and pacing are needed and part of how he expresses himself.  They know that 9 out of 10 times that his outbursts of enthusiasm are both important to him and great for the rest of the class too. I am happy.

The theme for this Autism Positivity Flash Blog is ‘Acceptance, Love and Self-Care’.  Perfect.  This theme reflects how things have been going for the last year.

Last year at this time I was anxious and concerned for how O was doing at school.  Despite great teaching and some class support, he was fitting in like a square peg in a round hole.  The school and class sizes were too big, there was too many transitions to cope with and the homework was overwhelming.  Something had to change because I was seeing his school confidence dropping and his anxieties rising.

We got him into a program that was suited for both his learning disabilities and his ASD.  Our guy’s school experience went from dark to light.  O loves his class this year.  There are 8 kids total in the class, the coolest teacher ever, a Child and Youth Worker apprentice in the class and full use of the technologies that help him learn.  Awesome!

What I love best is how this current program is not about whittling away at that square peg that is my guy to make him fit, it is about accepting that his shape is perfect for who he is.  He didn’t have to change, the system did.  His enthusiasm for certain video games is worked into the curriculum.  His pacing doesn’t have to be stopped, they just make room for it.  He is loved for exactly who he is and he is thriving because of it.

Unfortunately his current program ends at grade 8.  However, after the great meeting this week, I am confident that this path that has enriched him so much this year is going to continue.

I used to wish for that crystal ball to know what was going to happen in his future so that I could be prepared to work things out for him.  Now I am confident that all he is learning will truly help him meet his full potential.  Even if I don’t know what it will be, I am very sure that our guy’s future will be amazing.

Original Post: https://pamiseasilyamused.wordpress.com/2015/05/15/autism-positiviy-2015-flash-blog/

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7 Years After Embracing My Identity #AutismPositivity2015

By Ben Edwards

Today is Autism Positivity Day, and, conveniently for me, it almost coincides with the day where seven years ago I decided to fully embrace the fact that I am an autistic man, not man with autism, but autistic, with a Capital A. I know seven years is not much of a period, but for me, this coincides with the time I finally got my Bachelor’s degree, after seven years of college, fighting uphill against two college environments that for an autistic were hard to adjust to. Yet, in that time, I also started and led collegiate organizations on both campuses that stressed an environment where autistics could be themselves. I also started two autism blogs, which have now together garnered over fifteen thousand views in over sixty countries, spoke to children at an autism camp twice—which I had formerly attended as a teenager, the high school students of my former school for youth with intellectual and developmental disabilities, the Psych Club, Pursuit of Happiness Day forum, and the 2015 Spring Leadership Conference at UCM, wrote for the Autistic Speaking Day blog, the Autistic Self-Advocacy Network of Kansas City, the Horizon Academy (my high school) newsletter, the UCM Muleskinner, KCTV, the Kansas Legislature, JCCC’s Autism Beyond the Diagnosis 2008 Conference, and Autism and Neurodiversity in the Classroom on the struggle of the autistic community. I would also write The Friend of Autism Pledge, donate artwork to the Mission Project Housing for people with I/DD, and make poster presentations for Disability Awareness Week in 2013 and 2014, and Autism Acceptance Month in 2014 at UCM. I would also graduate UCM’s intellectual and developmental disability THRIVE program two years before I became the first, and so far only THRIVE student to graduate with a Bachelor’s degree, although many did go on to become regular students at UCM and other universities. The thing is that my life has changed so radically, as have others I’ve heard, from embracing who I am, something I have only truly done for less than a third of my life.

But despite all this, I actually feared telling my story to just anyone. I feared I would become an idol for “inspiration porn,” which is frequently the tone of any disabled person who rises above societies abysmal expectations of them, or, worse, overcoming autism. At no point was I free from self-doubt that largely seems to go unheard of with autistics like Temple Grandin and John Elder Robison. I questioned my decisions frequently and even blamed myself for whatever suffering came the way of my fellow autistic UCM students. In fact, if it were not for my meditation, spiritual life, true friends, family, and fellow Autistic Student and Peer Organization, JCCC Autism Spectrum Support Group, ASAN-KC, Camp Encourage, Horizon Academy members, various autistic and ally Facebook friends, I literally do not think I would have survived the last four years of completing the collegiate autistic advocacy experiment in Warrensburg. At every point, I encountered opposition from people who claimed to be true friends of autism, and am still learning much of the backhanded nature of their acts. Many said to me that given our societies unaccommodating nature of autism, these people did the best they could. However, all of them had in fact acted selfishly. Over my time at UCM, I learned four valuable lessons of how to get autistics to create a community that truly embraces people like us, including:

 

  1. Do not, under any circumstances, use the puzzle piece. Yes, the puzzle piece may be very well known, but if groups advocating for autistics care about us more than the group, they will sacrifice their commercial success for individual’s welfare. Any point where the name of autism advocacy is used to gain a competitive edge over others is almost certainly for selfish reasons. What really annoys me these days about the autism puzzle piece is that it seems to be a socially acceptable way of calling someone the R-word. Yes, every autistic person is unique, but I found rainbow mosaic or kaleidoscope symbols (not with just primary colors) also represented every autistic person’s uniqueness in a cohesive, natural way. A kaleidoscope’s changing ways can also represent autistic’s struggle to adapt to society.

 

  1. ACCEPTANCE, not awareness, is a mantra for change. When young, naïve neurotypicals stop me in the streets asking them to support their cause of autism awareness, I wish to ask them, “I live with autism 24/7, and it is in my sleeping patterns, dietary habits, and even the way I move. How can I not be aware of it?” The fact that a person would automatically assume I am not autistic leads me to wonder how much their cause is really promoting awareness. Awareness tends to emphasize elite neurotypicals and institutions lending their name to the cause of autism then it does the diverse stories of autistics in our own words. It is a paternalistic relationship, enforced by the perception that autistics are basically all children, not an empowering one.

 

  1. Blue lights cannot be away to welcome people you wish to be fully accepting, self-respecting autistics, for their only true association with autism is the logo of an autism an autism organization (Autism Speaks) whose financial, commercial, and corporate aspects are, at best, questionable. It would be like wearing gray for Black History Month, as gray was the color of the Confederate soldiers. Instead, I wear gold, whose chemical symbol Au is the first to letters of the word “autistic”; red, the color of a heart, which has been proposed as an alternative symbol for the puzzle piece; taupe, the color of the Tree of Neurodiversity, also suggested as an alternative symbol for the puzzle piece; and orange, the color of the spark logo of the Celebrate Autism Foundation, also suggested as an alternative to the puzzle piece; or rainbow colors, not just blue, representing the diversity of autism throughout life, and the Autistic Self-Advocacy Networks rainbow heptagon symbol, also suggested as an alternative for something. No prizes for guessing what.

 

  1. Autistics must be empowered to speak for themselves, as individuals, and as a community, not by neurotypical parents, celebrities, school spirit faces, or institutions. While neurotypical loved ones may help, they must not talk over, manipulate, or review for approval the voices ofautistics, because while many doing so do intend to help, let’s look at what picture this creates ofautistics: individuals, regardless of their age, who need mommy and daddy to fight their battles. Rather than empowering images of people you’d want for your company, social life, or any aspect that is a key to autistic integration,autistics are devalued as children, much the way slaves in the American South were called “boy.” The Autistic Self-Advocacy Network meanwhile, has created resources for everything from improving autistic services to preventing murders of children to stopping disabled discrimination in organ transplants, and has made substantially more differencethen elite individuals who wish to speak forautistics. For the first few years I knew I was autistic, these things—puzzle pieces, blue lights, awareness, and helicopter parents— were all I knew of the autism world. Consequently, I did not embrace my autism, and would not have done all this stuff for the autistic community if I hadn’t. I hope my fellow autistic individuals will be motivated to do the same things I have done and make this a better world for people like us.Original Post: http://autistdharma.blogspot.ca/2015/05/autism-positivity-day-2015-post-7-years.htmla6620-925e0399dd2041d17f9d40e6390963bb

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Married, With Aspergers: Acceptance, Love, and Self-care #AutismPositivity15

By Alexandra Forshaw

The national motto of France is “Liberté, égalité, fraternité” which translates as “Liberty, equality, fraternity”. It’s the reason for my advocacy, the end I have in sight. It’s a deceptively simple phrase that carries a wonderfully idealistic message: that we all have the basic rights to freedom, equality and belonging to a larger community.

  • Freedom means we are free to be our authentic selves, free to express ourselves in whatever way comes naturally.
  • Equality means our rights are the same as anybody else’s, our voices carry the same weight, we are seen as people who are every bit as valuable as anybody else.
  • Fraternity means that we are part of whatever community we live in, we have access to support and to community facilities.

This is what it means to be accepted. This is the least we deserve as human beings; this is our fundamental inalienable human right.

We aren’t there yet. Persecution such as that suffered by Kayleb Moon-Robinson and many others demonstrates that autistic people are not accepted by society at large. The message hasn’t gotten out yet: we are people just like you with hopes, dreams, needs, strengths and weaknesses. We need your acceptance; we need your love if we are to take our place alongside you so we can contribute to our shared society on equal terms.

This is why so many autistic people advocate on behalf of ourselves and those like us: we strive to educate and bring the understanding that is the gateway to acceptance. All you need to do is listen and learn.

Original Post: https://bjforshaw.wordpress.com/2015/05/15/married-with-aspergers-acceptance-love-and-self-care-autismpositivity2015/

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It’s Bridget’s Word: Acceptance, Love, and Self-care #AutismPositivity2015

By Bridget Allen

I am tired. Bone tired. Soul tired.

When I started this blog, I was in the best health of my life. I don’t mean that in some colloquial sense. I mean, as a person multiply disabled from birth, I was experiencing, for the first time in my life, health. Minimal pain, increased mobility, fewer seizures, and blood counts on the low end of normal, but still normal.

It was amazing. I felt like a super hero in middle of my own origin story.

I wanted to do all the things. “No” and “I can’t” left my vocabulary. The world was big and bad, and I wanted to do everything I could to make it a tiny bit better.

Of course, I am no superhero, and this is no origin story. Middle aged autistic grannies don’t have origin stories.
(And I wonder; why the hell don’t we? Really. We are an interesting and diverse bunch of bad asses.)

Please see this link to read the rest of this fabulous and important post: http://itsbridgetsword.com/2015/05/15/its-bridgets-word-acceptance-love-and-self-care-autismpositivity2015/

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Let’s Talk About Neurodiversity {Acceptance, Love, and Self-care: #AutismPositivity2015}

By Rebecca Monteleone

Flesch-Kincaid Reading Level: 12th grade. For an EASY READ VERSION, is available on full post. (see link)

[Note: the following blog post is my opinion. I certainly do not speak for everyone.]

Hello, everyone! Today, as part of Autism Acceptance Month (which was actually in April), bloggers from all over the world are posting to celebrate autism pride. This year’s theme, “Acceptance, Love and Self-Care” will be written about by hundreds of disability and autism bloggers. So, once you’re done here, check out #AutismPositivity2015 on your social media site of choice, and happy reading!

Today, I’d like to just have a quick chat about NEURODIVERSITY with all of you beautiful souls, and then I’d love to direct you toward some awesome autism-positive and disability pride resources so that you can feed your brains with the deliciousness that is the celebration of variation!

So what is neurodiversity?

Great question! Neurodiversity is an understanding that neurological differences should be recognised and celebrated as part of human variation. Differences in cognition should be valued and cherished as diversifying our communities and challenging false paradigms about “normalcy” (National Symposium on Neurodiversity).  Basically, the neurodiversity model posits that there is no one way for the human mind to function, and differences in neuro-functioning should not necessarily be pathologised.

Please follow this link to read the full post: http://insertdisabilityeuphemismhere.blogspot.co.uk/2015/05/acceptance-love-and-self-care.html

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We Always Liked Picasso Anyway: Acceptance, Love, and Self-care #AutismPositivity15

By Lei Wiley-Mydske

We Always Liked Picasso Anyway: Acceptance. Love, and Self-care: #AutismPositivity2015

Practicing self care can be a challenge for a lot of Autistic people.  We are constantly told that the way we use our downtime, or the things that we enjoy are not okay.  I have spent a lifetime unlearning how to be my natural self, but the last few years since my son came along, we are learning together that practicing self care in Autistic ways is just as valid as any other way…..

My son is homeschooled and finds learning the most enjoyable when he is allowed to pursue his own interests and build upon them.  Recently, he became interested in learning about notable women and various feminist icons.   I was very excited when he wanted to learn more about Frida Kahlo, who is a favorite of mine!

He enjoys learning about unconventional people in general, which is why I think that Frida Kahlo sparked his interest.  We talked about some of her paintings and about her life as a disabled woman of color and how all of these intersections impacted her art. We have enjoyed thinking about her symbolism and our own interpretations of her art.   Most of all, we have  just enjoyed looking and the feelings that her art inspires in us.

F’s favorite Frida Kahlo painting, “Self Portrait With Thorn Necklace And Hummingbird”.

F’s favorite Frida Kahlo painting, “Self Portrait With Thorn Necklace And Hummingbird”.

We thought it would be fun to take a break from our daily routine and practice a little bit of self care inspired by Frida Kahlo and do our own self portraits. While my son is a fast worker, I like to take my time, so mine is still not quite finished yet…

“Self portrait of F in front of a dragon cave with orbs”

“Self portrait of F in front of a dragon cave with orbs”

 

Unfinished self portrait of me, a close up of the also unfinished  face because the rest is not anywhere near ready to share!

Unfinished self portrait of me, a close up of the also unfinished face because the rest is not anywhere near ready to share!

 

Our Scrabble board, where we don’t care about rules and “gigapyro” is a legit word

Our Scrabble board, where we don’t care about rules and “gigapyro” is a legit word

We talked about the other ways that we like to practice self care. My son enjoys watching videos of his favorite video games “to get better at them”. He like snuggling with his cat, Sweet Dee, and playing Scrabble with me in our quiet place.

For me, self care is the ability to be outside in nature, hiking in the woods or at the beach and we are so lucky to live near both!

Please see the rest of the message and beautiful photos in this exquisite post at: http://autistictimestwo.blogspot.com/2015/05/we-always-liked-picasso-anyway.html

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It is May… We are Moving Forward! #AutismPositivity2015

By Amy Sequenzia

Acceptance, Love and Self-Care: #AutismPositivity2015

It is May.

April is over, and after the dreadful “awareness” campaigns, after all the clueless people – in some cases plain hurtful people – giddy about blue lights, after Autism Speaks once again spread the hateful rhetoric about us, after Autism Speaks collected money from people who walked in circles that led them nowhere, after companies partnered with Autism Speaks in silencing Actually Autistic voices, April is finally over.

We will see the consequences of the “beware of autism” campaigns all year long. Since awareness = beware of = fear = “autism is a problem”, we are already/still seeing very young Autistic kids being arrested, in handcuffs and shackles, charged with felony, all because they had a meltdown (usually caused by failures of the neurotypical adults around the child).

More people are listening to Actually Autistic voices.
More people are not afraid of learning from us.

One example that made me squee came from television, and expanded to social media. I have never seen this happen before. Autistic characters have always been caricatures, a product of the “awareness” campaigns. And actors have been mostly unresponsive to us, they have usually followed the lead of the big media savvy Autism Speaks.

I am not a big TV fan but if I see something I like, I do watch and I saw not one, but two awesome Autistic characters on TV.

In one show, the main character was Autistic. He was a prodigy, he stimmed with a ball in public, he had meltdowns.
He was also lovely, affectionate, empathic, and sometimes confused about his emotions.
He had a romantic/sexual relationship, you know, as many people do.

The character was not a caricature, he was Actually Autistic. He was human, like all Autistics are.

The credit goes to actor Gavin Stenhouse, who did what should be common sense: he reached out and learned from Actually Autistic people for the part.
He is also a sweetheart, very accessible and responsive to fans on Twitter.

He went all in when asked to join the #WalkInRed hashtag in support of Autism Acceptance. He took pictures and tweeted them.

When he tweeted #LIUB (Autism Speaks “Light It Up Blue”), we asked him to not do it. He read about our reasons, and deleted the tweet.

He heard us, he joined us. Acceptance and Respect.
A positive portrayal of autism, an actor who is accepting.
Autism Positivity.

The other show also had an Autistic main character. The actor on this show was Ashley Zukerman. The character was a hacker who had extreme sensory overload, huge meltdowns, and who was not considered capable of making his own decisions.

I loved how this one character debunks the silliness of functioning labels. The actor showed us a character with a wide range of needs and unique assets that is what we all experience in our lives. He needed some accommodations, and he needed space. He needed to be accepted and respected.

More Autism Positivity. No caricatures.

I think this is important and I thanked them both for that. TV is mass media and, in the same way the proponents of “beware of autism” send subliminal messages that scare people, positive messages can also reach TV viewers.

Something even more awesome: Autistic actors on stage, using autism as their best asset, like actor Mickey Rowe. Autism Positivity in the performing arts!

It is May!
We are moving forward, towards acceptance. It is sometimes frustrating and slow but along the way we collect positivity, we celebrate them.

Acceptance and #AutismPositivity.

Note:

I know many people want to see disabled actors playing disabled characters. I do too.
I will, however, celebrate any Autistic character that is realistic and not based on assumptions, stereotypes or portrayed through the lens of normalization.
If the actors do their research and seek our input, if they are respectful and open, I will celebrate them.
Furthermore, some actors may be neurodivergent or Autistic. Unless they confirm or deny, we don’t really know about their neurology.

If they spread Autism Positivity, I will celebrate.

Links:
Gavin Stenhouse Twitter account: https://twitter.com/gavinstenhouse (check his pictures)
Show was “Allegiance”, it has been cancelled but I think it is still available online
This interview is great (acceptance and identity-first language) http://starrymag.com/?p=5591

Ashley Zukerman Twitter account: https://twitter.com/ashzukerman
Miniseries was “The Code”, on Netflix

Actor Mickey Rowe Twitter account: https://twitter.com/MickeyIsaacRowe
He wrote this: http://howlround.com/our-differences-are-our-strengths-neurodiversity-in-theatre

Original Post: http://autismwomensnetwork.org/acceptance-love-and-self-care-autismpositivity2015/

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