Social Skills for Everyone

ableism, Autism, Disability, Education, Friendship, Infographics, Neurodiversity, Parenting

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[Each of the slides above has its own image description. Slideshow can be paused for ease of reading text. Full transcript at the end of this post, with a downloadable PDF.]

Issues of social inclusion are often persistent throughout a disabled person’s lifespan. Lack of inclusion can be a vicious cycle if non-disabled people are unfamiliar with how to include and interact with disabled people in their community:

1. disabled people are excluded, are segregated to disabled-only spaces, and/or withdraw from community life when they are socially rejected

2. non-disabled people continue to have social spaces and groups that have no disabled people in them, and they never become familiar or intimately connected with disabled people

3. disabled people continue to be rejected or excluded by non-disabled people who are unfamiliar with how to include us

And, REPEAT.

How do we break this cycle? Traditionally, most of the onus has been on disabled people to assimilate and “normalize,” but this not only doesn’t work well, it’s unfair and ableist. Mainstream culture is beginning to realize that non-disabled need to do more to include us without trying to “fix” us, but it’s crucial to understand that acceptance is more than just a feeling. It’s a series of actions, and for most it will require some learning and listening to disabled people.

I have a dream that parents of non-disabled children will begin to talk to their kids about disability, as early and as often as possible. Just as with other issues of discrimination, it’s not enough to trust that your kids will be “nice” – even nice, lovely, kind hearted children may discriminate against or exclude disabled children if they simply do not know how to include them, and don’t understand people who are different from themselves in ways that a child can easily perceive.

This guide is a start. Please please share it with your kids and talk to them about what disability inclusion means. It’s not about pity or charity, it’s about equality.

Social Skills for Everyone PDF

FULL TRANSCRIPT:

Cover.
Infographic cover has the title Social Skills for Everyone,” subtitle making friends and getting along.” Above the title are two human figures, one waving their arms with a speech bubble saying hi!” and the other with arms akimbo and a speech bubble containing ellipses. 
Page One.
Infographic text says: You might have noticed… there are all kinds of people in the world. no two are exactly alike. Not even twins! You probably won’t be friends with everyone you meet (and that’s ok!) but learning to get along with people makes life a little better for all of us.” One group of human figures is multicolored, with a green figure waving and saying hello!” A pair of orange figures who look the same as each other stand side by side, one saying I love drawing comic books” and the other saying I don’t draw. But I love Minecraft!” 
Page Two.
Infographic text says: There isn’t only one right way” to socialize… Just like there isn’t only one way to play! Everyone has their own style figure adds, and I think that’s cool!’ and learning someone else’s style is how you include someone new figure adds, and hey, remember… next time, the new person… could be you!’” Bottom image shows a green figure standing in foreground holding/touching their own head, with other figures in the background playing and one waving in greeting to the green new person.
Page Three.
Infographic text says: When you meet someone new… it’s nice to greet them and ever nicer to invite them to talk or play with you.” Image shows two human figures in foreground and two more playing in the background. A green figure waves and says to the orange figure, Hi, I’m Alex. Do you want to play tag with us?’ More text: but what if they don’t answer?” The green figure stands with a question mark thought bubble, while the orange figure touches/holds their own head and stands with a thought bubble containing ellipses.
Page Four.
Infographic text says: It might NOT mean they don’t want to play. Try this! Wait a few more seconds some people just need a little more time to answer questions or think of what to say.” Orange figure has a speech bubble that says …………okay!’ Move so they can see your face some people need to read your lips while you talk.” Two green heads in profile face each other, one with sound waves around mouth. Ask in a different way if they aren’t sure how to answer, using different words might help.” Green figure points to the side and says to orange figure, He’s it.” Let’s run!’ Or maybe just try again later. They might not be ready to join in yet, and that’s okay too!
Page Five.
Infographic text says: Some people do not speak at all (or not very much) but you can still include them! People who don’t speak communicate in other ways, like: Body Language! (orange figure in a variety of poses/gestures), using their voice in other ways (orange laughing face with speech bubble hahaha!’) or even using an app on a tablet! (orange figure holds a black tablet which has a dialog box saying okay. let’s play!’)
Page Six.
Infographic text says: When you meet someone who seems different, you might notice that they look, talk, or act differently than anyone else you’ve met before.” A green figure stands touching/holding their own head with a question mark thought bubble. It’s okay to ask polite questions.” A green figure asks, Does that hurt?’ to an orange figure with a small red mark on their face, who responds, No. It’s just a birthmark.’ More text: It’s good to celebrate our differences AND remember we aren’t all that different on the inside we all pretty much want the same things: to be accepted, to feel we belong, and to have fun doing things we enjoy.” At the bottom is a row of human figures: a green one with arms akimbo, orange one with heart-shaped birthmark, gray one waving arms, green one with headphones high-fiving a gray one with an orange wheelchair.

When Do We Get to Be Autistic?

Autism, Friendship, Identity, Neurodiversity

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I’m seeing a new therapist and I’ve told her how much I like to write; last week I told her that I haven’t blogged in a while because I haven’t had the time, but this morning I told her that I’ve realized I am not writing because I don’t know what to say.

She told me that it’s important to keep doing this so that I have a voice.

So I’m going to try to say some things.

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I have a friend who is autistic and also a kind of mentor to me, someone who’s been around for longer and I look up to her because I admire her sense of fairness and the way she applies a gentle touch to fighting for social justice. And also because she has this way of leaving me with these jewels of words that I keep forever – and she probably doesn’t realize she does this, but perhaps she will recognize herself when she reads this – like when I fretted that my inability to express convincing enthusiasm would put her off and she told me, “you don’t have to do the face with me.”

And when we were talking about another autistic person who was under fire for the way they talked to other activists and she said that she was sad because she knew this person was kind and thoughtful and was being misunderstood because of their communication style, which made her wonder, “when do they get to be autistic?”

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This is a post that is not about me, or it’s partly about me, but it’s also about all of us. We’re pattern seekers, you see – we Autistics. Or maybe “pattern receivers” is a better phrase, as so often the patterns just seem to be there, revealing themselves to us. The pattern that lately reveals itself to me everywhere I turn is that it’s still not acceptable, sometimes not safe, to be Autistic in this world, no matter how much lip service is paid to awareness or acceptance.

This is about me, and it’s about all of my friends.

It’s about my friend Michelle who writes, “when I am authentic in my neurodivergent way, I see a pattern of becoming distant from friends and isolated from community.”

It’s abut my friend Ally who writes, “Pretty much every person I talk to or meet, is probably ableist and would think that people like me should be prevented from being born or should not be spoken about with accurate descriptive language because it’s uncomfortable and we all know that Big Pharma is taking over the world and just inventing stuff to medicate and don’t you know that autism is just an excuse?”

It’s about my friend A whom I won’t name without permission but who has spent hours with me dissecting what is really going on in our conflicts with non autistic people and how to balance self care with bridge building and… well. Without A I don’t know what I would have done these past few months, really.

It’s about the people at the Autism Women’s Network meetups who express how much they long to show the world what they can do, what they have to offer, what they’re good at, but struggle to attain even the most basic supports, not because those supports are impossible for others to provide, but because the people in neurotypical environments think that we should be able to just suck it up and deal with: painful lighting, overwhelming noise, fast transitions, sudden schedule changes, our inability to communicate verbally under stress.

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The awkward thing about being an autistic adult who communicates in words is that we are expected to have “overcome our autism” when we have no such goal even if it were possible (spoiler alert: it’s not). I have personally been congratulated for overcoming autism: a well meaning gesture that means nothing at all. For a time I thought this was a kind of applause for having the ability to pass, but I have learned that it’s code for “we expect you to act normal now and anything that you can’t do we will consider a personal failing.” For adults who were not diagnosed until adulthood or are not diagnosed but have self identified, this goes double.

We still ping as different, as other, as unacceptable; but everything that pings as non-typical about us is attributed to a cause that is NOT autism – it’s just a character flaw or something we are doing wrong.

– if you have social anxiety, actually you are just
—> rude, unfriendly, antisocial, self-isolating, a misanthrope, a snob

– if you have a direct communication style, actually you are just
—> rude, confrontational, aggressive, insensitive, argumentative

– if you are drawn to deep connections in conversation, actually you are just
—> too serious, too intense, a downer, socially awkward

– if you have sensory aversions, actually you are just
—> fussy, entitled, irritable, negative

– if you have executive functioning challenges, actually you are just
—> lazy, disorganized, incompetent, a complainer… or not that smart.

So the people who “just don’t see it” when you say you’re autistic or who think it’s so great that you’ve “overcome” the way your entire mind and body are designed simply because you can say words with your mouth or type words with your fingers (sometimes), definitely see that you are not like them. They’ll tell you so all the time, in their own way.

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I worry that because I fumble to express myself in a room with people but manage to find my words when I’m alone with my fingers on the keys, I will be seen as

—> disingenuous, passive aggressive, two faced, or just plain

Crazy, like those old coworkers once called me when they found my blog…

I’ve had a pervasive feeling of not being safe lately that’s been impossible to shake. I don’t mean that I have felt myself to be in physical or mortal danger, but my soul, my true self, is afraid to come out. I’m aware of being too much, too intense, too serious, too too… . I worry that owning the word disabled will cause people to see me as incompetent. I feel that asking for more help or support will cause others to think that I can’t do it at all. I can’t stop pushing myself to prove my worth through my hard work. I will wear myself out trying to earn a place in the world.

I look on others who come out to the world with powerful vulnerability, who find their strength in softness, with keen envy. I feel miles away from that. Light years away.

I don’t feel brave enough to speak. But someone told me that I should keep writing because I need to have a voice. If this is my voice, I have some things I’d like to whisper.

Hiding

Autism, Friendship, Identity

When I was 11, I had a crush on a boy who was a year younger, a boy from my church, and we also went to school together. Liking a boy in a lower grade than oneself was a thing that was simply not done, and so I concealed our puppy love, until it came out, as such things always do. My friends at the time both teased me for going out with a fifth grader, and embarked on a mission to flirt and lure him away from me. They had me coming and going, mortified, jealous, and exposed.

But that’s only kid stuff. Not like the time in college when I broke out of my usual mode of strict privacy in an attempt to bond with some girlfriends, trying to copy the way they forged their social bonds, by participating in a frank sexual conversation. And then one of them later repeated something highly personal that I’d said. Loudly. To a large group of acquaintances. In front of me.

I don’t mean to be oversensitive, of course. Maybe I was being overly sensitive too when I started my first blog, pouring out my innermost thoughts, kind of like I do here, but anonymously. It was something only my fellow anonymous internet bloggers ever saw until I worked up the courage to send the link to a close friend, the closest friend I’d had in years (maybe ever), to see what she thought, and she flatly replied, “it’s not you at your best.”

I should say former friend, because later that person sent me a letter informing me that she no longer wanted to be my friend, because she wanted to move on from me. That was not the first time that happened to me, by the way. It also happened to me the summer before seventh grade, a similar letter in the mail telling me that my friends had decided to be my friends no longer.

But, hey, I misjudge people sometimes. Like that time in my early 20s when I quit my job, and attempted to retain a friendship with one of my coworkers, sending her an email after I’d left, and including (again, oops! I never learn) a link to my blog. In hindsight, of course, I can plainly see how profoundly NOT my friend that person was, but at the time it didn’t cross my mind that she might cross me. She never replied, but another former coworker did email me, to tell me my “friend” had forwarded my blog to every single person in the company and they’d all laughed at me together and joked that I was crazy and in need of psychiatric help.

That’s the first time I’ve ever told that story to anyone but my husband, by the way, because for several years I couldn’t even think of that episode without feeling humiliation and shame nearly as fresh as the day it happened. I had nightmares about having to return to the company to work there again, for years.

Still, you would think that by age 30 I would have developed a better radar for trustworthy people. Instead, at that stage of life I found myself being dumped by a close colleague I’d worked with intimately for a few years. We were partners in business and, I thought, friends outside of work, until the day – which seemed to me completely out of nowhere – she told me coldly that I was nothing without her and she didn’t need me anymore. Nothing. It might sound like a House of Cards parody now, but it didn’t feel funny as I stood in a parking lot and wept uncontrollably, feeling like the unprofessional child she’d told me I was, but unable to stop myself crying.

Hide everything you care about, hide the things that matter, hide all of your feelings, hide your true self, because letting people see you is dangerous.

Humiliation and shame. Those are recurring themes in my social life over the years. The life lesson learned is to hide. Hide everything you care about, hide the things that matter, hide all of your feelings, hide your true self, because letting people see you is dangerous.

Hiding is an early instinct for autistic people, I think. Because it only takes a few rejections and betrayals for us to note the pattern: expose yourself and you may be hurt. Because we have an intense drive to protect ourselves from pain. Because we often can’t tell which people, places, and situations are safe, so it’s best to just avoid risking it, and to hide our most valued things, our most intimate selves, out of sight.

The trouble is, this is unsustainable. Because like any other human being we long for connection, and so eventually we’ll do it again and take a risk. Like Charlie Brown agreeing to kick the football (a thing I think Charles Schulz well understood – I suspect he was autistic too), we always will end up trying again, one more time yet again, to let ourselves be seen and hope that this time people won’t pull the football away, and let us fall flat on our backs, and laugh.

Sometimes it becomes a weird feedback loop where, because we are hiding, we find ourselves surrounded by people who only actually love the false fronts we put on. Like my former friend who told me my innermost feelings were not “me at my best,” to these people our “best” side is the side we show to please them. This is not a deception, however; we have fully internalized the belief that we must try to be this “best side” of ourselves, the one that earns the approval of our family, friends, teachers, colleagues. We want to be at our best, don’t we? And so we push those embarrassing other parts of us down, out of sight, and we hide.

I still hide, all the time. I hide the things I love, the things I’m passionate about, the things that delight me, the things that I enjoy just for fun’s sake. I hide the books I’m reading when they’re about social justice. I hide the video games I play on my phone because they are probably silly. I hide the guilty pleasure TV shows I watch late at night on Netflix.

I hide my blog in plain sight. That might sound baffling, because it’s a public blog that I write under my real name and I actively promote it on social media, but I also pretend to myself that my loved ones don’t read it. I just try not to think about them ever seeing my words. I never send them links to posts I write, I don’t talk about blogging, I cringe to mention the word “blog” in front of my own husband. It’s not that I don’t want them to know the real me, it’s that I’m embarrassed. I’m afraid. I can’t even let myself think about how exposed it makes me feel because if I think about it for too long I feel tempted to just delete the whole thing. Retreat. Hide.

I don’t have a solution for this; I expect that I never will. I’m just trying, now, to at least stop feeling ashamed for the times that I let myself come out of my hiding places.

When I was a kid I used to read Peanuts in the Sunday paper, and when I was very young I believed there was a chance that someday Charlie Brown was actually going to kick the football. Why not this time? It could happen, right? And then when I got a little older I just felt angry at Charlie Brown – why did he keep letting Lucy trick him, he knew she would pull it away, why did he even try?

But now as an adult I know that Charlie Brown would always try to kick the football one more time because that trying again was part of who he was, and that was one thing no one could never take away from him.

The Bethany Card

Friendship

On Sunday November 5, 2011, a childhood friend of mine passed away from a sudden heart attack. Bethany Haveard was 34 and is survived by her husband and their five beautiful children. She was a wonderful, caring person who was always there with an encouraging word for her many friends.

I have created the Bethany Card to honor my friend and to help her family. Send this card to a friend or loved one just to let them know you care, are thinking of them, and love them. This is a hand drawn, printed card on cream cardstock, with a blank inside for your personal message; all proceeds will go to Bethany’s Memorial Fund to assist her husband and children. It will be available starting today on my E Custom Cards Order Now page and in my Etsy store.

Remembering Bethany

Friendship

Yesterday I found out on Facebook that a friend of mine had died. I didn’t understand what I was reading at first; I had just read a post from Bethany early that morning about how one of her newborn twins was a great sleeper and the other up all night. Suddenly a mutual friend was writing what looked like a goodbye. I went to Bethany’s wall and people were writing “rest in peace.” It made no sense. Until it did. But how could it be true?

Bethany was only 34, a year older than me. She had a sudden heart attack due to spontaneous coronary artery dissection, a very rare event that is more common in postpartum women. She was a mother of five children, including twin girls who are two weeks old today. On Saturday she was fine. On Sunday she was gone.

Bethany was my first friend. My first best friend. We met when we were just toddlers – our parents later told us that she used to call me “the little girl with the yellow hair.” We were next door neighbors all our lives until we moved out of our parents’ homes. In the picture above we are standing in my backyard and behind us you can see her house.

In the early days, we were inseparable. Every day we were at each other’s house or playing outside together. We played House a lot, and I was always the Big Sister while Bethany was Mommy to her baby dolls, because she was a year older, but also because she just was the mommy. She was one of those little girls who was always nurturing and maternal, born to be a real mommy some day.

I remember one time we had to spend the day apart for some reason. We agreed that at a certain time we would sit by our bedroom windows, which faced each other, and play Dionne Warwick’s “That’s What Friends Are For,” which we had each taped off the radio. I remember gazing out at her house, so sad to be separated for a whole entire day.

I still have that song on tape, along with the theme to Punky Brewster and some tape recorded conversations between us when we about 5 and 6 years old. There is one part where she asks what’s on my finger and I tell her it’s a cardboard ring, and she cracks up laughing. She had the BEST laugh.

When we got a little older, we made other friends at school, but we were still great friends, still together all the time. We made up dance routines to every one of the songs on the soundtrack to Stand By Me. We had sleepovers.

Then one day our parents had some sort of falling out, and said we were not to play together anymore, and we obeyed. It was hard to lose my first best friend, but by then we had lots of other friends, and we moved on, and eventually grew apart, as kids do.

During senior year of high school Bethany passed me a note on the bus. It said that she still cared about me and wished that we were still friends, and she was inviting me to come to her house and spend time with her sometime, if I wanted to. I did want to, and I did go hang out. But it was awkward, because so much time had passed we didn’t really know each other anymore, and at that age we were different… I was a rebel without a clue, but Bethany was the same as she ever was – sweet, open, loving.

A few years ago Bethany reached out to me again, finding me on Facebook and reigniting our friendship. Right around that time, she and I and some mutual friends from way back in school were all pregnant, but I lost that baby. Later, Bethany was pregnant again, and lost her baby around the beginning of her second trimester – she named that baby Alex. I spoke with her on the phone then, wishing to lend her support in any way I could, answering questions, telling her where to find the support group that had helped me.

Friendship in the age of Facebook is a funny thing – and so is loss. I haven’t seen Bethany in many years and chances are I never would have seen her again, since she had settled in Florida and I in Nebraska. It’s strange though, because there is so much intimacy to an online friendship when you are part of their everyday. Building that on top of our shared history, I felt that we were connected again. And yet I know that that sadness I feel over losing her – so suddenly, it doesn’t seem real – can’t compare to the grief that the people who really knew and loved her, held and hugged her, laughed and cried with her, must be feeling.

This is the thing that seems so unfathomable about losing Bethany – she was such a beautiful person. If you met her as an adult and you were kind of a cynical person like me, you might think, no one can really be that nice. But I knew her from the beginning, and I knew she was genuine. She was always that way. She cared deeply, she loved everyone, she reached out to people, she was kind. I keep looking at the messages people are posting on her Facebook wall now, but I can only stand to read a few before it’s too much. It is just so unfair that her five children not only lost their mother, they lost an amazing mother, one who loved them with such an abundance of joy that it seems impossible she could have been taken away from them, and from the world.

I’m still not sure I really quite believe it. But I will remember her every day.