Tuesday, April 30, 2013

Join Today's Autism Positivity Day Flash Blog!

Today is the last chance for April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We hope you can participate in today's Autism Positivity Day Flash Blog. Details and links below.  -TPGA Editors

From the Autism Positivity Day Flash Blog site:

Last year hundreds of bloggers came together in a show of support and solidarity in response to an anonymous person’s Google search “I wish I didn’t have Aspergers”. The posts that came flooding in from all over the world were a beautiful example of the power of strength in numbers. With so much negativity still surrounding Autism and the misinformation and misconceptions that continue to abound, we invite each of you to share one, or two, or more “Ausome” things!

We invite all of you, anyone who is Autistic, anyone who has an Autistic person in their life and all who blog about autism to share a message of support, wisdom, hope, and pride to this year’s flashblog by posting to https://docs.google.com/spreadsheet/viewform?formkey=dDdPQjAxV244VjdCcXdYX0pPQ0RBblE6MQ.

Details and social media links at autismpositivity.wordpress.com/2013/04/24/1sitivity-2013-flashblog-event.

Monday, April 29, 2013

Inclusion is NOT Social Action

Lisa Friedman

We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing Autism Acceptance posts and pictures all month long. -TPGA Editors

In a recent post, Inclusion is NOT a Program, I reflected on the notion that while all of our synagogue's programs, classrooms, and worship opportunities should be inclusive, inclusion is not a program.  It’s not a one-time workshop or training session. Inclusion is an attitude, it is something that is just naturally woven into the fabric of what we do. At least it should be.

Today I was reminded of something significant that I have learned from one of my mentors in the world of Jewish Disability Awareness and Inclusion. Rabbi Lynne Landsberg, Senior Advisor on Disability Issues at the Religious Action Center of Reform Judaism, teaches that "Inclusion is NOT social action." But all too often, congregations do not know where to "put" their conversations (if they are even having them!) about inclusion, so they fit them under the umbrella of social action.

There is a distinct problem with this. 

By definition, social action stems from the concept of tikkun olam, repairing the world. There is no doubt that we all need to work together to bring real and lasting change to our world, particularly around the conversation of inclusion. But typically, in congregational life, social action is the term we use to describe the "projects" that benefit others. This is the antithesis of inclusion! We do not "do" inclusion "for" people with disabilities. Rather, it is incumbent upon us to figure out how everything we would have done anyway, can be inclusive. See the difference??

Need more?
  • Preparing food for your local shelter = social action
  • Inviting residents of a local group home to Shabbat dinner = NOT social action
  • Planting a garden as a sustainable food source = social action
  • Taking a group of congregants to the Special Olympics NOT social action
Thinking of inclusion as a function of your social action committee perpetuates stereotypes and devalues the significance of any effort you might otherwise bring forward.

So start an Inclusion Committee. Have the conversations. Invite some individuals with disabilities to be a part of those conversations. And then maybe together you can all plan a social action event.

A version of this post was previously published at jewishspecialneeds.blogspot.com.

Friday, April 26, 2013

I’ve Just Seen A Face


We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing Autism Acceptance posts and pictures all month long. -TPGA Editors

I’ve just seen a face / I can’t forget the time or place / Where we just met

This is not a sad story.

Two months ago, a child psychologist confirmed what we had once denied but had long since come to know was true, and thus it was that “autism” became as commonplace a word in our house as “Netflix.”

She’s just the girl for me / And I want all the world / To see we’ve met

Mmm, mmm, mmm, mmm mmm mmm

She’s helping us plan quite the celebration; it will be Madeline-themed, down to a hat-shaped cake that she can’t stop talking about. (“DADDY WILL MAKE A MADELINE HAT CAKE!” No one is happier about life than a little kid with her own cake.) But in honor of today, I’m celebrating her a little early. If you read other posts today about autism awareness, you’re undoubtedly going to come across some disquieting things. There is an enormous cloud of ignorance and stereotypes around diagnosis, labels, and what autism means in our society.  There is so much fear. But there’s none of that here. Here, close to my daughter’s heart and mind, I can talk about what was left after we turned away from the confusion surrounding an autism diagnosis:


Had it been another day / I might have looked the other way

And I’d have never been aware / But as it is I’ll dream of her tonight

La, di, di, da di di

It’s something about Maggie’s eyes, I think. She’s often so quiet; she’s constantly observing. You wouldn’t know how active her mind is. But my grandfather saw that joy, that burning intensity she shares with those she allows into her sphere. If you didn’t want to see her, you wouldn’t–she watches from a safe perch. She protects herself. But when you see her -- truly see her -- you know that she burns with love and light.

I have never known the like of this / I’ve been alone and I have missed things

And kept out of sight / For other girls were never quite like this

La, di, di, da di di

We see her intensity and we have seen what it’s like when the world becomes too much for her. When things are too fast, and when things feel wrong, we think we can get a glimpse of how hard that sensory overwhelm can be. That part of autism is well covered and often played for tragedy points in popular media.

But what of joy? Is it not reasonable for me to believe that because she feels and senses so intensely that she is able to experience happiness on a plane that I can only imagine? I believed that before I knew for sure that it was true; I see her taking joy in things that escape my notice entirely. A sweater that I think of as simply “soft” melts under her hands; the crunchy crackle of extra-strong garlic bread with a bit of sea salt brings fulfillment to her that it does not bring to me. Her senses bring her such a vivid experience. She consumes life with vigor and gusto, and in that vitality I see that Maggie has within her an incredible spring of delight -- the capability for rapturous happiness.

So let us first be aware of this: my daughter is autistic, and she is happy.

Falling, yes I am falling / And she keeps calling / Me back again

And are we, her family, happy? Incredibly. I have written much about fear and uncertainty here and about panicking over the future. But we see now what incredible shades of privilege and ignorance we had over our eyes: that our neurotypical ideas of happiness were the only standard, and that all else would measure up and be found lacking. That she had to conform to the world to be accepted. These attitudes are not only inappropriate -- they are ableist and wrong.

My background is writing, not engineering, but even I know that a building built on uneven, unprepared ground cannot stand for long. To build that strong foundation for Maggie -- to be who we needed to be for her -- the ground first had to be leveled and the landscape permanently altered. Being good parents to her has meant ripping down everything we thought we knew about human communication and interaction, facing biases and ignorance of our privilege that we never knew existed within us, and rebuilding ourselves as parents (point number five is especially important) from the bottom up. It has hurt. It has not always been pleasant. But it has been absolutely necessary in order to see that autism is something inextricably linked to all of Maggie’s senses, and to her sense of self and the world.

We owed her full acceptance. We owed it to her to celebrate her joy, and to return her joy with our unconditional love. Maggie does not have an illness, and she is not broken. We do not seek to cure her, but to push for acceptance for her differences and for recognition for the unique, necessary worldview she offers.

To wish for a “cure” is to wish that our daughter -- who she is now and who she has always been -- did not exist and that another chapter with another child could be written instead. (If you read no other links from this post, read this one.)

And because this is not a sad story, that chapter of rejection and resentment does not–and will never -- exist. This is the story of Maggie’s face, full of intensity and happiness and anger and all the fun and flaws of human existence. She is the child I dreamed of, my firstborn; the child who was a part of my body for 41 life-altering weeks. I could not conceive of my life without her thirst for the world.

I’ve just seen a face / I can’t forget the time or place / Where we just met

So today’s word: awareness. We need a national conversation with autistic people, their friends and families, and supportive organizations to find the best way to support and accommodate those on the spectrum.

But we need more than that. We need acceptance. Accepting the true reality of her life: full, good, happy, with friends and loving family. Accepting the possibilities of her future: friends, hobbies, interests, a job, a partner or children of her own one day if she so desires. Accepting that she is not scary or sad, and accepting that her existence is not a tragedy. Accepting her joy, and never implying that if she would just/could just/if only, she might be happier or have a better quality of life. She already is happy; she has a good life. So do a lot of people who go with their humanity unrecognized and unacknowledged. 

She’s just Maggie, our Margaret Kelley: an autistic person, and a happy person.

Let Maggie be the face you remember and talk about today. Remember that she is not the one who needs to change.

Remember that her story is a happy one … and that if the world is willing to think “acceptance,” it will stay that way.

She’s just the girl for me / And I want all the world to see we’ve met

*Italicized lines are the lyrics from The Beatles’ “I’ve Just Seen A Face”

A version of this essay was published at travelingmonkeys.org.

Thursday, April 25, 2013

Asperger's Syndrome Meets Alpha Male Syndrome


We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing Autism Acceptance posts and pictures all month long. -TPGA Editors

7a.m., Monday morning.

I make a rare appearance in the break room at work. I'm sipping coffee, trying to wake up. I'm standing in the corner hoping to avoid people, but a co-worker makes intentional eye contact and starts walking towards me. I think, "Why, god? Why?" I can't remember his name or which department he's from.

The protective social mimicry kicks in.

Co-worker: Dude, can you believe it?

Me: Dude, I really can't.

I have no idea what he's talking about.

Co-worker: You know what I'm talking about ... right?

Me: Of course. You're talking about ... you know, what a surprise it was.

C: I know! Twenty-one six in, like, no time at all!

I blank out ... pause ... then realize that this is likely a sports reference of some sort.

M: I mean, really. It was crazy.

C: Psshh. Best-team-in-the-league? Not anymore, buddy.

M: I know, right?

C: Did you see the whole thing?

M: Oh yeah. You didn't give up on it, did you?

C: Almost. Dude ... I almost stopped at half time.

"Half time" ... we're probably talking about football. Was the super bowl this weekend? Should I make a super bowl reference? No. Not yet. Rule #1 in conversing with humans: stay vague.

M: Still, games like that ... that's what it's all about.

C: Oh no doubt.

Yikes. He's looking at me expectantly, but I'm out of ammo. I'm glancing at the door behind him, thinking, "He's on to you! Run!"

M: So.

I need to bait him into saying something. What do they do in football?

M: The, um, throwing game...

I pause to see if he'll pick up the slack.

C: Seriously. It killed, you know? I mean, it was non-existent there for awhile, I didn't think it was gonna happen, but yeah. It killed.

M: He stepped up when it mattered.

I'm assuming there's a notable "he" involved; seems like a safe bet.

C: They oughtta shorten his last name to just "Man," you know?


M: Yes! There's an idea. And put a "the" in front of it. The Man.

C: Boo-yeah!

M: Woo!

He holds a fist up. I experimentally hold a fist up. He proceeds to tap his knuckles against mine. Oh god ... have I just been initiated into a weird sports cult?

M: Wow, look at the time. I'm late for a meeting...

There is no meeting.

C: Take it easy, bro.

I flee the scene.

Wednesday, April 24, 2013

Towards Acceptance

Emily Brooks

We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing Autism Acceptance posts and pictures all month long. -TPGA Editors

While paging through a local special needs magazine, I paused to scan though a section focusing on autism awareness. It informed me that I should care about autism spectrum disorders (ASDs) because there are so many autistic people that unfortunately it was likely I would meet somebody with autism in the near future if I hadn’t already.

Being on the autism spectrum myself, I wondered why it would be so unfortunate for someone non-autistic, or neurotypical (NT), to meet me. ASD is -- according to that special needs magazine, of all places -- unfortunate. If this loaded term is part of “autism awareness,” then what exactly has “awareness” come to mean?

Perhaps awareness is about informing the public about this "epidemic," and about the many people  "battling" or "struggling against" autism. Everywhere I look, the theme of "autism as crisis" keeps popping up. At the bookstore, a fat encyclopedia scares parents into prevention of autism; on the other side of the same shelf, a parent’s memoir details a triumph over autism. Guidebooks discuss pros and cons of pharmaceuticals that can treat symptoms of ASD; autism assistance dog organizations boast that their canines are trained to stop autistic kiddies from stimming, a.k.a. the repetitive movements like hand-flapping and rocking that can help us autistics soothe ourselves. Parents, upon hearing their child’s diagnosis, are professionally advised to grieve the loss of the child they actually wanted -- which I presume to mean one without ASD.

So is awareness about knowing the signs of an "epidemic" that requires prevention, has symptoms, should be treated, and causes parents to grieve? That sounds like ASD is a serious medical condition! And searching for a cure implies that autism is a problem. But ASD isn’t a medical issue; rather, it's a neurological difference.

Awareness is not about the lived experiences of people on the spectrum. If you have any doubts, consider the official symbol of autism awareness, the puzzle piece: the way that the NT world views the ASD one. To NTs, autism is a question mark, a jigsaw puzzle to solve. For decades now, they’ve collected their clues and theories -- including refrigerator mothers, mercury, vaccines, medications, androgens in the womb, pollution, gluten, genes, older dads -- and they will likely continue to try to piece it together. The larger autism research organizations proudly broadcast their main motivations: research into the causes, prevention, treatment, and cure for ASD.

So why are so many people subscribing to a medical disease-metaphor of ASD that seeks to fix what I believe isn’t broken? Perhaps it’s because of the underlying fear that autistic people are a menace to society, that we are dangerous, violent, and unproductive. Even when those with ASD show no signs of any outward aggression, media misinformation and sensationalism feeds NT fears that autistic people are lacking something fundamentally human, and therefore, that we aren’t really human enough.

Right after the Newtown tragedy, I happened across a forum dehumanizing people on the autism spectrum, symbolically interweaving our brains with the thoughtless lack of compassion of monsters, arguing "they should all die." Disgusted, I turned away. The repeated falsehood that people with ASD cannot experience empathy leads to another popular falsehood: that we are sociopaths. It’s a pitiful lapse of logic. Just because I am on the autism spectrum doesn’t mean I can’t feel for you -- I actually have so much empathy that it hurts. ASD just means I'm worse at reading and interpreting your body language, and awkward at identifying and expressing emotions in social situations. And I can think of heinous crimes committed by non-autistic people, but I don’t generalize or believe that being NT leads people to kill. Autistic people deserve that same respect.

Sadly, the linking of irrational behavior and autism is only strengthening in the public eye. This year, a national autism conference is devoting one session to aggression in ASD; the conference bulletin alludes to recent news and offers practical suggestions. The session description mentions tantrums in the same line as terror, falsely leading the public to believe that meltdowns -- the uncontrollable fits that people with ASD experience because of sensory overload, communication frustrations, and anxieties -- indicate future aggression. Connecting these two things is just plain irresponsible. It leads an innocent NT world into fearing and further ostracizing people on the spectrum. Maybe they’re afraid of a kid having a meltdown at the grocery store. Or maybe they’re scared of the adult sobbing and rocking on the subway bench, which I confess was me just one week back.

Being on the spectrum is just another way of processing the world. My brain is wired slightly differently, and while that presents me with challenges other people may not face, I like myself the way I am. But does self-acceptance have a place in mainstream awareness rhetoric?

It’s clear that acceptance doesn’t have a place in most awareness campaign shows. Autism "success stories" are usually about passing as normal, not about celebrating difference. One such success story, posted on an autism volunteering site, explained that with the right treatment, kids with ASD can appear to be just like their NT peers. The "optimal" outcome is framed as assimilation into the culture of the neurotypical.

In my world, acceptance trumps assimilation as the optimal outcome. Autism acceptance is about appreciating the spectrum of humanity without using a hierarchical scale that devalues minority thinkers. It’s about putting money toward programs that assist people with ASD in enjoying successful lives, not funneling funds toward a search for a "cure." And perhaps most importantly, it’s about listening to the real experts on ASD: the people on the autism spectrum.

And so, this April, I challenge you to see ASD not as merely bearable or tolerable, or fixable or preventable, but instead as a gift of neurodiversity that enriches society with new perspectives and creativity. Who says that complexity is a bad thing? I might not meet your eyes and I’ll probably miss your sarcasm and I’ll most definitely flap my hands when I’m telling you something exciting, even as an adult. But maybe you'll like me for who I am, even though I don’t see things the same way that you do. Maybe you can share with me, share your tools that make this world, which is structured and designed for the NT mind, a little less overwhelming. Through affirming attitudes and supportive programming, let’s cherish this gift and better meet the autism community’s needs. Let’s start seeing each other’s worth in the moment. Let’s gather the courage to finally utter the truth: We are good enough just as we are.

Tuesday, April 23, 2013

Autism: When the Right Message Goes Mainstream

Jennifer Byde Myers

We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing Autism Acceptance posts and pictures all month long. -TPGA Editors

When we first started Thinking Person's Guide to Autism (TPGA), our goal was to put, all in one place, the best information from autistics, parents of autistic children, and the professionals who serve our communities. We always felt it was key to deliver this information with frankness and with honesty, especially regarding autistic struggles, and challenges with aspects of education and parenting. We did not want to seek pity, or place blame. Instead, we sought to highlight neurodiversity as part of the fabric of humanity, part of what it means to be human. We wanted to present a variety of perspectives about autism, and approach it all from a place of positivity, with hope for a future that is more accepting, and holds more opportunities for autistic people. We wanted to share what we wanted to eventually see in the wider media.

Three years later, things are really starting to change. We have a long way to go; I won't pretend we aren't still at the beginning of recognizing the autism rights movement as part of the larger civil rights movement. But communities like Thinking Person's Guide to Autism are helping that recognition move forward: I am a TPGA editor, and was able to bring TPGA principles to my article in the April 2013 edition of Family Circle Magazine -- the ninth largest subscription magazine in the United States. I talked about my experience parenting my autistic son Jack -- and I know that so much of my parenting is informed by my relationships with adult autistics, as well as the parents and professionals in the TPGA community.

A typical angle for an autism parenting article would still be the one where the mom is "devastated" by her child's diagnosis, where all she wants to know is "why," and how to "fix" her precious broken child. That's not what I wrote, not what I believe. I'm lucky, I never felt like my child was stolen from me. I never wanted to cure Jack of anything. Make his life easier? Teach him skills? Of course, but while recognizing that he is autistic -- that is who he is. So I wrote some things I know are true: being patient is hard but necessary, and how it is paramount to find "your people," the ones who get you and your family. Most importantly, to me, I got to share an idea that just isn't usually out there in the mainstream: Presume Competence:
When you meet my nonverbal son -- or any disabled person -- please assume that he understands you and what's happening around him. Nonverbal doesn't mean not intelligent. Say hello to him; don't just speak to me or his aide. He may not answer, but his hearing is perfectly fine. If you think he doesn't understand anything, that's all you will see.
I have received emails from strangers thanking me for sharing this one little thing. The notes came from people who are probably decent human beings, who just never had anyone tell them this in a clear way, and now they will interact differently with the world around them, forever. And you know what? It wasn't that hard for me to convince the editor that this idea was important enough to be in the article. I just had to explain it, and *poof*, the typical "pity me and my child" angle no longer fit into the conversation. 

Family Circle magazine didn't just embrace my article. As part of Autism Awareness month on Family Circle's blog, they featured articles by four other TPGA editors, which means articles by autistics (whose voices are often left out).

Mainstream magazines rarely feature autistic parents talking about parenting autistic children, but Family Circle gave Carol Greenburg the chance to answer a question she hears so often, does being autistic give her special insight into parenting her son?
Because I’ve walked this road myself, sometimes my familiarity helps me navigate its twists and turns with my son. For example, I look at similar special interests, sensory reactions and stims (self-stimulatory behaviors) my son has now that I had way back when. I think about what spurred them in me to figure out what’s going on with my son. I can try to help him meet needs he may be having trouble articulating.
And while many publications are still stuck in the blue funk of Awareness, Family Circle posted Kassiane Sibley's essay on how she is teaching self-advocacy to young autistics:
My goal is to give them a library of advocacy skills that they can eventually pull from in most situations. That way, when they need to advocate for themselves, they know at least where to start.
Shannon Des Roches Rosa talks about balance in her essay, What I Love About Thursdays. Autism is not the defining factor in deciding how much time she devotes to her children; they each require nurturing and attention:
...autism doesn’t change my fundamental connections with my children—different as all three of them are. It certainly doesn’t change how much I love my son and want to spend time with him. And it doesn’t change how much I love and want to spend time with his sisters.
And finally, Emily Willingham writes, not about the limits of a "unifocal obsession," but about the freedom her son has to explore his interests:
...not a day goes by that he doesn’t show us the benefit of leaving him space to find his potential, and that includes space for the things he enjoys most.
As perspectives like ours are embraced by "mainstream media," I am hopeful we will see a shift, that the language used to describe autism and autistics will sound more like difference than disease. And if we persevere, there will be less talk about "cure" and more focus on care -- and more autistic voices will be heard, and recognized as autism experts.

Monday, April 22, 2013

We've All Got Our Something

Emily Willingham

We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing Autism Acceptance posts and pictures all month long. -TPGA Editors

What does it mean to be neurotypical or not?

Someone told me via email that I seem to be "demand(ing) all the trappings of neurotypical privilege" in public while saying that I'm not neurotypical, and I'm wondering about many aspects of it. First, I'll establish that I am what I say I am. That means that I'm a scientist, writer, editor, mother, life partner, and friend. There are adjectives to describe me, as well, but that's a longer list, and I'll avoid both the embarrassment and the indulgence.

What I do know is that I've spent a lifetime being anything but neurotypical (I'm still not sure what that is), and I think I've made at least that much clear. As a woman--what the parsers of Victorian literature would probably call the "odd woman" -- I have had my share of negative experiences related to how my brain works and my behavior, so it's odd to me that someone would describe me as "demanding" the "trappings of neurotypical privilege" in public. I've never demanded any such thing, nor, to my recollection, have I ever experienced them, whatever they are. In my mind, my experiences have been a long string of social learnings, beginning from when I was very young and continuing to today.

I didn't coalesce my feeling of oddity into an identifiable unit until I was in my 30s, but I was aware of not fitting in at least from first grade on, which was easy because my peers made me very aware of it. My social ineptitude and blindness led to considerable childhood misery that included suicidal ideation from a very young age and repeated sentimental listenings of Simon and Garfunkel's "I Am a Rock." As is common with people having my social incapacities, I found myself by junior high in a group of hooligans, struggling to fit in with them because the people who were more like me in other ways -- grades, socioeconomics -- would have nothing to do with me. The hooligans didn't like me much, either, and my greatest triumph from that experience is that I never ended up in juvy.

My parents, in a hyperreaction to get me away from the hooligans and the limited schooling options of my hometown, opted to send me to boarding school my freshman year, when I was 13. A very emotionally immature 13. My 13-year-old self was a mass of contradictions, like most 13-year-olds, but I was even more extreme, unable to read people, unable to tell when they were mocking me until it was too late, subject to some of the most extreme 24-7 bullying imaginable. I wandered alone in the wilds behind the school, read books I liked instead of doing my homework, and once again fell in with a group that could never be described as well behaved. And underwent systematic, methodically cruel mental and emotional torture from the girls around me. Dickens could have written my life in those 9 months and it wouldn't have been hyperbole, but the thrashings would have been mental, rather than physical.

That boarding school year sounds like a mistake, but in hindsight, I think it might have been the best thing for a girl like me. What better way for an inept to learn about social interactions among my peers than to be immersed in those interactions every hour of every day? Was I good at it? Nope. But I came out of those 9 months with an arsenal of information about how people my age thought and behaved, what drove their interactions with each other and with me, how to function among them. I'd learned that my way of association was to use social algorithms, the if-then constructs of small-talk social exchanges that I still use today. It has been immensely useful to me, and I still think of those girls in that school and how much they taught me, often by being mocking and cruel, but the lessons remain good ones.

Indeed, today, I'm so stuck in my algorithms that I'll proceed with one even if the other person's taken it off into a different algorithm. My most common error is to enter into the "How are you?" "I am fine, how are you?" exchange, assuming that the responder will provide that "how are you?" question in return. Even if they don't, I'll still respond, "Oh, I'm fine." I've never been able to tell if people notice it or find it odd, but I do this one all the time. I'm stuck in my ways now, and I can't seem to get a pause inserted into that one to make sure the question gets asked.

I still collect my algorithms, watching people exchange small talk, picking up tips and adding in bits and pieces to existing ones, but for some reason, that oldest of algorithms is one I can't modify for specific situations. If we're past small talk, I'm just genuinely Me, doing one of two things: listening sincerely and intently (which I do a lot) or talking too much, probably being overly loud or overly enthusiastic or swearing a lot. But those more superficial exchanges that come from a place of social niceties rather than being born from the gut? Algorithms.

Another problem for me is reading faces. I can remember faces better than just about anyone I know. If I haven't seen you for 20 years, I'll still probably recognize who you are and link your name and face. I can identify the most obscure actor in a movie and list that actor's previous film and television credits. But if I say something to you that's offensive, subtle facial expressions and body language -- especially passive-aggressive behaviors -- in response will go right over my head. I will not know I've offended unless you tell me. Then, I'll feel bad. Very bad. And I'll apologize. If a person laughs with gusto or expresses what they're thinking in honest words, I'm all good, but those subtle or passive-aggressive behaviors? I miss their implications entirely. My life history is littered with such overlooked passive messaging, and I sometimes laugh at my idiocy when I think about cues like these that I've missed. We're all dumb about something, aren't we?

People have commented to me about my behaviors throughout my life. I've got a decades-long reputation for being blunt. People say things like, "Why don't you tell us what you really think, Emily?" I've blurted out some honest observation at the wrong time and put my metaphorical foot in it. My friends and family know how I feel about hugs (and no, I don't think it's funny if someone knows that about me and then gives me a big, long bear hug. Not funny at all). And I've heard about my flat affect, including from total strangers who drive me up the wall by saying, "Smile! It can't be that bad!" when all I'm doing is walking through the mall. Which, by the way, is kind of that bad, but that's not why I'm not smiling. I won't even get started on my feelings about crowds, lights, noise, or Costco.

Then one day, shortly after I started my postdoc in my mid-30s, a resident who was doing research in the lab met me for the first time. I was in a state of high excitement because I'd just had a hilarious exchange with a postdoc from Brazil who was saying the word "urine" to me in Portuguese and somehow, I couldn't understand the cognate. So he and I were rather hysterical by the time she showed up, having finally understood each other. I tend to get sort of ... edgy looking ... when in the midst of high hilarity. She took one look at me and said, "Hmmm. There's something here, isn't there. You've got something. What is it? ADHD? Something." I must have had that look in my eye, that slightly manic laugh over the word "urina," and she picked up on it immediately. She, of course, must have had a "little something," too, as that was pretty much the first thing she said to me. But her comment was like the proverbial lightbulb in my mind and brought my lifetime of social experience into that light, experiences that now took shape as Something. I've never sought to have my Something named. It was simply useful and somewhat of a relief to know that it was there, recognizable for people paying attention.

In the end, we all have "a little something." Some of us have more Something than others. I don't know what the privileges are of someone who's less Something and more Neurotypical because I've never been that way. Thirty or even forty years ago, I might have benefited from having my "something" labeled, maybe, if people had understood the label and used it to understand me. We use our sons' labels to understand them and as shorthand for the world, and we advocate for them and their future in part on behalf of those labels. Labels are relevant to me but not as important as generalized perspective taking and embracing neurodiversity in all of its forms.

As for me today? The labels I use are the ones that fit my current roles: scientist, writer, editor, mother, life partner, and friend. Considering my past, considering my social struggles and my presentation as the Odd Woman, my ability to bear each of those labels is an enormous privilege to me. And that is something.

Previously published at daisymayfattypants.blogspot.com.

Friday, April 19, 2013

Book Review-And Straight On til Morning : Essays on Autism Acceptance

And Straight On til Morning : Essays on Autism Acceptance
edited by Julia Bascom
Published by the Autistic Self-Advocacy Network 

We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing your Autism Acceptance posts and pictures all month long. If you want to participate, contact us at thinkingautism at gmail dot com. -TPGA Editors

In keeping with Autism Acceptance month, there probably isn't a more appropriate book to share than And Straight On til Morning : Essays on Autism Acceptance, which contains the work of wonderful Autistics and allies, including Zoe Gross, Shain Neumeier, Lydia Brown, as well as Kassiane Sibley, and Shannon Des Roches Rosa from TPGA.  Julia Bascomebook, it is available quickly, and very inexpensively at $2.99.

I was never much for any of the campaigns to wear a certain color, or a certain ribbon. When I was told that April is Autism Awareness month, I thought it was just plain odd, because we're pretty aware of autism. What's missing is the impetus from Awareness to Acceptance, and that's precisely what this book works to do. One contributor, Carol Quirk, reveals her personal transformation from the deficit model--by listening to autistics, and their families, she began to "presume competence." This shift in paradigm changes the way an ally advocates, from speaking for autistics, to listening and learning from autistics. And Straight On til Morning focuses on this shift and has a forward by ASAN President, Ari Ne'eman that is all at once, grateful for the changes we've seen with the growth of the neurodiversity movement, and yet remains a call to arms to work for Acceptance.

The opening essay Plants Outside the Shade, by Amanda Baggs,  is moving and poetic as she shares how she interacts with the world, "Objects have always been alive to me, and my interaction with them has always felt like communication."  And she reveals how rarely people have understood what she is communicating, because of how she conveys the message, "I seem to come with an entirely different set of assumptions about the world than most people do. The older I get, the more I realize there are huge gaps between how I see the world and how others do." 

Baggs description of accessing skills with her autistic brain reads like undulations of information, rather than having a constant level of ability, and she explains it so well. Her words left me wondering if this accounts for the difficulty some have when skills don't transfer to other environments; home versus school, or why routine is sometimes a solace.

Cheryl M. Jorgensen, PhD. an educator, walks the reader through the concepts of accepting autism as a "natuaral part of human diversity." Where the disease model fades away, and "having autism should not diminish a person's ability to live a full life in the community." In this realm a student's behavior is assumed to be a form of communication, not a behavioral issue.
What if we appreciated the unique talents of students with autism and recognized the contributions that they might make to our schools and communities?

While the tone of the book is generally pressing, after all this is advocacy work, we are left with a sense of purpose after most essays, but this is not without hard truths, and in my case more than a few tears. Killing Words by Zoe Gross, send a clear message with the title alone, and I was absorbed by Shain Neumeier's detailed account in The Judge Rotenberg Center on Trial. At the Judge Rotenberg Center, horrific, almost Medieval-type "therapy" is still administered to clients in the form of painful electric shocks to the skin in an attempt to punish self-injurious behavior (like tensing your entire body...while you are strapped down). In the trial, you can hear by the language of the defendants that they see these patients as "other;" There is no acceptance to be found here. JRC will be shut down with the help of groups like the publisher of this book, ASAN, eventually, but until then, a read-through of this case underscores the need for continued advocacy.

There is a section devoted to Acceptance vs. Awareness, where Kate Gladstone, Kassiane S., Lydia Brown, and Shannon Rosa point out the subtle and not so subtle ways the two are very different. As Kassiane S. says "Awareness is easy, Acceptance required actual work."

A little bit of light is wrapped up in the stories that remind us progress that has been, or can be made when Paula C. Durbin-Westby proffers playdates in, From the Pro-Neurodiversity Trenches, and Andee Joyce shares her public speaking debut, I'm in Ur Toastmasters Meeting, Giving U Speeches. And Meg Evans, whose essay title was used for the book, writes, 
As we work to create more opportunities in society for ourselves and our children, we are storytellers above all else. When we focus on developing inclusive education programs, ending employment discrimination, making community services more widely available, and many other worthwhile causes, we are crafting social narratives centered on acceptance and inclusion. Such stories form a backdrop for the scenes of a strong, confident, successful life.
The stories that this book holds are just a glimpse of all that we can learn from each other. And in the strive for a world where Autistics are included not as an afterthought, but as integral voices to shape teaching and classroom environments, and are considered part of the "team of experts" structuring support systems, it would serve us well to continue to gather as much insight as we can from books like this. 

And Straight On til Morning : Essays on Autism Acceptance is available at Amazon.com in the Kindle store.

Jennifer Byde Myers is an editor at Thinking Person's Guide to Autism, and received a free copy of this ebook for review. Her writing here reflects her own opinion of the book.

Thursday, April 18, 2013

How to Be Socially Awkward, or, What I Learned In Social Skills Class

N. M. Silber

We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing your Autism Acceptance posts and pictures all month long. If you want to participate, contact us at thinkingautism at gmail dot com. -TPGA Editors

Warning: snark ahead.

Over the years many people have “explained” the autism spectrum to me, for which I owe them a debt of gratitude. Without their thoughtful help I would never have guessed that I was cognitively impaired and lacked empathy. Who knew that I would never grasp the subtleties of language or concepts, like irony, sarcasm, or satire?

More than anything, though, I deeply appreciate how their expertise helped to blend in flawlessly in social situations. Rather than just staying at home and doing things that make me happy, like reading or writing about subjects I like (being socially isolated and fixated on obsessive interests), I can instead engage in meaningless conversation with people who I don’t know well or like very much (socialize appropriately). I have a whole list of conversation starters in my pocket and I’m ready to mingle, baby!

There’s only one snag that I have run into so far, the fact that apart from other Autistic people, nobody else has had social skills training. Time and again I seem to encounter people who have not learned that when I approach them (with a smile and good eye contact, making sure that my body is facing them and I am standing at an appropriate distance), that they are supposed to turn toward me and pause their conversation so that I can use one of the “openings” that I diligently practiced. They also don’t know that they are supposed to warmly welcome me when I toss out (in a carefully slowed down and not overly-loud voice),  my “Hey guys” or “What are you guys doing?” Amazingly enough, some of them even seem to find this type of thing a little awkward, or even creepy, coming from a complete stranger.

I’m sure that it has nothing at all to do with anything like the realistic quality of the scripted conversations that I memorized.  After all, they were created by  experts who clearly must have known a great deal about the dynamics of social interaction -- especially back when I was a teen attempting to interact with other teens and those experts were so much older and wiser. I suppose I’ll just have to chalk it up to coincidence.

It’s not that I have been systematically taught to be even more socially awkward than I already was, it’s simply that everyone I have ever approached and been rejected by has been an undiagnosed autistic person in need of appropriate social skills training.

Previously published at extemporarysanity.wordpress.com

Wednesday, April 17, 2013

How CalAcademy Could Be a More Autism-Friendly Science Center

Shannon Des Roches Rosa

We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing your Autism Acceptance posts and pictures all month long. If you want to participate, contact us at thinkingautism at gmail dot com. -TPGA Editors

My son Leo and I are members at San Francisco's California Academy of Sciences for two reasons: 1) We want to support fabulous, hands-on science, and 2) We depend on members-only early entry hours so we can avoid the crowds and noise that don't always mesh so well with Leo's exuberant autism and his favorite CalAcademy routines.

Though our CalAcademy trips are usually happy ones, today's visit was a bit bumpy. Leo's autistic behaviors -- his loud squeals of happiness while watching his beloved Planetarium show, for instance -- started disturbing other visitors, so we left the show before anyone could complain. It wasn't a total wash -- we still enjoyed grokking with the fishies in the Aquarium, riding the elevator from the Living Roof, and partaking in the obligatory Tortoise Photo Op. But not being able to stay in the Planetarium show got me thinking.

Leo would be so happy -- and so would I, and so would so many of our friends -- if CalAcademy and similar science centers would officially investigate and recognize the needs of their autistic visitors, and incorporate autism acceptance and accommodation alongside existing ADA Accessibility guidelines. So here are some suggestions:
  • Conduct staff autism acceptance training. Help floor staff recognize autistic behaviors of happiness and self-soothing (squeals, hand flapping, stimming, pacing, etc.), and train them to advocate on behalf of autistic patrons when and if other patrons complain. Autism is part of natural human variation, after all, so this approach would be in keeping with CalAcademy's ongoing mission of exploration and understanding. (Note: please consult with Autistic people when recruiting autism experts for this training, as not all autism specialists respect autistic needs.)
  • Highlight existing autism- or sensory-friendly (or unfriendly) features. When are your periods of lightest traffic? If they are during members-only hours, emphasize this! Are there quiet areas where overwhelmed patrons can retreat so they don't have to leave? Map them! Where are the noisiest areas, when are the noisiest times? Diagram them!
  • Hold periodic autism or "all abilities" showings at planetariums or IMAX theaters. Leo is not the only person who adores immersive audio/visual experiences yet has trouble sitting still and/or keeping quiet. Why not get a whole room full of his fellow whoopers & fidgeters together? This wouldn't exclude other visitors, of course -- but they should be informed that noise and movement will be tolerated.
  • Have center-wide autism or all abilities events. The San Jose Children's Discovery Museum holds "Play Your Way" events several times each year (the next one is this Saturday, April 20th), and a few years ago the Exploratorium had a autism-only family night (the new Exploratorium opens today, in its much more sensory-friendly space). Connect with those organizations, find out how they made their events happen.
Implementing any of these suggestions would be so helpful for the many, many autistic people and autism families who never even go to CalAcademy or other science centers because they don't feel accepted, or accommodated; who don't have Leo's thick skin and relatively high tolerance for sensory inundation. If you have additional suggestions for ways to make science centers more safe and welcoming for autistic people and their families, please leave a comment. And CalAcademy folk -- if you're reading this and want to talk further, I'd be delighted and so would Leo.

Tuesday, April 16, 2013

The Third Glance


We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing your Autism Acceptance posts and pictures all month long. If you want to participate, contact us at thinkingautism at gmail dot com. -TPGA Editors

On the surface, I am a young PhD student, studying my absolute favorite subject. I am independent from my parents. I am asexual. I have a super cool secret life based on a hobby I have. I can speak in English, and I know French, and some American Sign Language. I am a voracious reader, both of fiction and non-. I love playing the piano. I am Autistic. And I have a story that wants to be told.

At first glance, I pass. I can enter into the neurotypical world and it looks like I’m doing well. It looks like I’m normal, successful, and all-around a good example. I graduated college in two and a half years, with honors, while most people -- including my parents -- thought I would flunk out in a few months. I’m a research scientist, in a wonderful lab, doing what I love to do, and I even get paid for it.

I live independently, and I can take care of myself. I have good “life skills”: laundry? I’ve been doing my own since I was four. Cooking? No problem, I am able to make at least one real meal every few days, and can fake the rest with cereal and sandwiches and leftovers. I’ve learned to manage money and can pay all my own bills on time. I’m rules oriented. I’ve never missed a deadline, because I know that it is against the rules. I’m not violent, and don’t have obvious, visible meltdowns in public. I’ve been trained, meticulously, to be invisible, to not be a burden, to exist without being seen or heard or even acknowledged.

Because when you take that second glance, you see that I can’t pass. That I flap and jump up and down and babble incoherently when I’m excited about something. That when I’m tired, or scared, or thinking really hard, I curl up and rock. That I don’t make eye contact, and that I typically communicate in a very one-sided way. That I wear the same thing day after day after day. I have eight fleece jackets, because I like the way they feel on my skin, and I wear one every day, because if I don’t the strange textures on my skin make me so uncomfortable that I can’t function. That I jump at the slightest sounds and I always know who is entering the room. That I need to have a routine and lists and written reminders and timers to function. That I often forget to eat or drink because I’m so absorbed in what I’m doing that I don't notice hunger or anything else. That I’m so sensitive to textures that when I do remember to eat, it’s often the same thing over and over again, because I can only tolerate a few foods.

The second glance is the one that most people stop: I’m too weird for them, and it’s an effort to be near me or friendly to me, or even to acknowledge that I exist. In our society, “different” translates to “difficult” and difficult situations and difficult people are simply swept under the rug with the philosophy “if we just ignore them, they will go away.” I can pass just enough to be read as “normal” at first glance, and to be made invisible and a nonperson at second glance.

But then there’s the third glance, the one that most people never bother to take, but it is the most important one, the one that captivates you, and turns that fleeting glance into a good long look. I am the person I am today, because there are a few people who took that third glance. And they saw a compassionate, excited, quirky person. They saw someone who is brutally honest, exceptionally aware of her surroundings, keenly observant, meticulous, interesting, and fiercely passionate: someone who is worthwhile, and who will be a loyal friend, if you give her the chance. They saw a person, because they took the time to really truly see.

I’m hoping that you will take that third glance. Not just at me, but at everyone in your life. I hope that sharing my story, I will help you to see beyond that second glance, and to understand the people you at first brush aside because they are too different. I’m lucky because I have words that I can use to express how I think and feel. But these words are new to me and I am still learning how to use them. I am still learning how to take that third glance at myself. So learn to take that Third Glance and open your eyes and really look at those around you. And in doing so, you will come to know amazing, passionate people. And take that third glance at yourself and discover the wonderful person under your own skin. Because everyone deserves to be seen.

© E (The Third Glance) 2011 | A version of this essay was originally published at thethirdglance.wordpress.com and is reprinted here with permission from the author. 

Monday, April 15, 2013

What Autism Means to Me


We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing your Autism Acceptance posts and pictures all month long. If you want to participate, contact us at thinkingautism at gmail dot com. -TPGA Editors

It is awesome to be different, it’s genetics. Our DNA makes us all different, that is what God wanted. Acceptance is a big word but really, it’s easy to do. Why would God place us all on the earth to be the same, I don’t want to be like everyone else. Why do some accept people in books and movies like Harry Potter, people who aren’t real but I’m real and you don’t accept me? I do awesome things, I’m a great friend, and I’m an awesome gamer and Nerf player. We all have special powers, your powers aren’t any better than mine, they are just different.

I forgive the bullies who were mean to me. I forgive the grown-ups who were mean to my mom and dad. I think that they bully because something bad happened to them and I feel sad for them.

Any kid that is different just wants to be accepted, to be loved, to have a friend, to be who they are with all their quirks. It is not nice to have people make fun of you, tease you, bully you, laugh at you and to stare at you. If you have questions just ask me but don’t point and be mean.

If you accept God and Jesus why can’t you accept who He has created? He created me, He made me different and He made me awesome! I know sometimes I don’t always look people in the eyes or answer loud enough or know what to say but I love everyone and I am listening, sometimes I just need a minute to think or to know what to say. I am not being rude, I just need to think. I want you to hug me but sometimes it makes me feel awkward just give me time and I will hug you back. I like high fives and fist bumps to show people that I love them.

I am not a number that the doctors put out, I am not just Autistic or a math genius, I am more than that; I am me, just call me Logan. And watch me change the world.

Friday, April 12, 2013

Autism Acceptance: We All Grow Up

Jennifer Byde Myers

We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing your Autism Acceptance posts and pictures all month long. If you want to participate, contact us at thinkingautism at gmail dot com. -TPGA Editors

I heard a crunchy sound from a mouth that should have been empty. It is a horrible feeling when I think one of my children has eaten something dangerous. We've been pretty lucky around here, the most inedible items actually swallowed aren't really inedible, the cut-off tops to strawberries, nibbles of wine corks, a little raw onion, a small piece of crayon; nothing really harmful at all.

So when I heard the crunchy, chomping-on-china-plates sound, I begged Jack to spit out what was in his mouth. He laughed as I followed him around the kitchen, and tried desperately to put my finger in the side of his mouth. Just as I was wondering how much worse it was going to be when he bit off and swallowed my finger along with the glassy sounding bit, he pushed a small white object out between his lips at me, and it bounced between my fingers and clinked like porcelain onto the floor. He smiled and ran across to the living room.

It was a tooth. His tooth, of course. He's still a kid who is going to lose teeth. All at once he is both too young and too old for that, but he's 11 1/2, so he is actually right on time to lose those molars. And whether I am ready or not, many milestones occur without regard for ability or disability. He grows physically, and changes mentally by the minute these days.

He's just at that point between being a little boy and a young man. In some ways, he'll always be my baby, just like I am my Daddy's "Jennyalice, " and Momma's "BabyGirl," but I need to remember that he is growing up. It's challenging sometimes to gauge things because his known abilities are so uneven and his expressive communication requires a patience on my part that I strive for rather than come by naturally. But even if Jack is not at grade level in math, it doesn't mean that he might not have crushes on girls, or start to have other new interests. We've already recognized that he is attentive to Myth Busters, and done with Dora.

I'm trying to stop using the word "potty," and use instead, "bathroom" or "toilet." I hold myself back a little bit when he is in front of his classmates before I smother him with kisses. When the topic of moving from one classroom setting to another came up at his school, I asked him what he thought, and what classroom he thought he should be in.

As a society we often infantalize people with disabilities, especially those people who do not speak typically. People who use AAC devices aren't always given credit for all of the nuance of thinking they may have because their device 'speaks' in straightforward, quipped language. And those who do not use devices at all are often thought to have no thought at all. In the absence of a clear, articulated sentence, it is still important, or rather, imperative,  to consider Jack's opinion first in any situation that involves him, and to be respectful to ensure that, as much as possible, barring safety concerns, Jack be in charge of his body and his actions.

It would be easier to push and pull him where I want, maybe. It would be faster if I made the choices: vanilla or chocolate, green or red, apple or pear. It would be convenient to use only my desires to dictate where we go and what we do next. I'm guessing this is just part of the parenting process in some ways, when our children are young we control most of their environment, and some of that control naturally falls away with a typical child who asserts themselves with voice or physical action. With a kid like mine sometimes you have to look carefully for the cues that tell you to step aside. The longer I have this job, the more I realize that it is my goal as a parent to teach my children to make good choices on their own, and to support them so they are confident in the decisions they have made.

And as they grow older, I will encourage both of my children to give thought to what they want out of this life.  As individuals they need to consider what is the best thing for themselves, for their family, and for their community with any choice they make. It may always be harder for me to tease out what Jack thinks is important, and to discover his desires, and I recognize that he may need help executing many of his choices.. but he deserves to be heard.

When all of those little baby teeth are gone there will be a precious, possibly-pimply, fuzzy, young man standing in my kitchen, and we should all want to know what he thinks.

A version of this essay was previously published at jennyalice.com.

Thursday, April 11, 2013

I Am Not a Token Autistic

Samantha Bodwell

We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing your Autism Acceptance posts and pictures all month long. If you want to participate, contact us at thinkingautism at gmail dot com. -TPGA Editors

My name is Samantha Bodwell, I am the sole Autistic on the board of the Autism Society of Northern Virginia and due to my suggestion and further urging my board voted unanimously in November of 2011 to rename April Autism Acceptance Month!  :)  I am not a token Autistic, like some are on majority Neurotypical boards, but a full contributing member!  :)  This is the second annual celebration of Autism Acceptance Month here in Northern Virginia. In honor of Autism Acceptance Month I have made a sign and posted it in our front yard.

Happy Autism Acceptance Month everyone.

*My Autism Pride Shop, a portion of the purchase price will be donated to organizations that promote Autism Pride and Autism Acceptance!  Please check out my wares and if you have any ideas for things I can design don't hesitate to suggest them!

Wednesday, April 10, 2013


S.R. Salas

We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing your Autism Acceptance posts and pictures all month long. If you want to participate, contact us at thinkingautism at gmail dot com. -TPGA Editors

A lady asked me what I wanted for my child (Bas). My answer to her was the same answer I would give if asked the same question about Bella or Lex. And that answer is this:

 I want him to be happy!

The lady I told this to didn’t think that was such a good answer. As a matter of fact she tried to impress upon me in a very patronizing tone that my hopes for my son were “not very realistic.” Please remember, that this walking book of  knowledge had no children (still giggling about that little tidbit). If you define ‘realistic’ as I did above, you will see that it is to seek what is achievable or possible based on known facts:

Fact:  People make Bas happy

Fact:  Being loved makes Bas happy (Bas is loved to bitty pieces)

Fact: Bas has a network of love and support through family, friends, and his schooling community -- and they all want him to be happy (and he makes us just as happy in return)

Fact: Riding horses makes Bas happy (he rides horses)

Fact: Books make Bas happy (he has many books at home and we go to the library and bookstore together)

Fact: Water makes Bas happy (we go to the beach and the pool)

Fact: Music makes Bas happy (he has more music than an iTunes store)

Fact: Computers make Bas happy (he has use of all sorts of computers and technology)

Fact: Learning and going to school makes Bas happy (we found an amazing school and he absolutely loves it!) 

I could go on and on but there’s no point. You guys get the idea, and in all honesty there is one fact that makes listing all the above facts obsolete…

Fact: BAS  IS  ALREADY  HAPPY! (so why is it unrealistic for me to want him to continue to be so?)

So Here’s The Really Big Question…

Why is it unrealistic to want my autistic kids to be happy, yet it’s perfectly all right to wish that very thing for my NT child?

Does This Make Any Sense?

To me it doesn’t, not right out of the gate anyway. Is it my autistic brain blinding me to the views of others? I’m sure quite a lot of it is -- my brain blissfully functions oblivious to the thoughts of others on most days. So, I’m asking … What on Earth could this woman be thinking? From this point on, I am only speculating because, as you know, I didn’t hang around to bask in her wisdom. Why would I? She had the bar lowered and her mind made up before she even met him! Because he’s autistic.

Anyway, I think I have an idea where she was coming from. Let me first say that I don’t think this woman was mean or hateful, I’ll call her … uneducated in the ways of diversity! Okay, now I’m gonna take a shot at playing devil’s advocate and let’s see where it takes us:

If one is of the ilk that believes happiness should not be a ‘goal’ in the life of a person with a disability; and that their days would be best put to use if filled to capacity with therapies, doctor’s appointments, and behavioral interventions; and that a realistic goal in life should be working as hard as possible to ‘get better,’ then you know what? … I think I can see why some unenlightened folks (maybe this woman) think that people with disabilities don’t have much to be happy about. And why they believe that we as parents are being unrealistic in wanting to see our children happy. And maybe, just maybe:  They can’t conceive of the idea that someone with a disability has much to be happy about.

Bite Your Tongue (or theirs)!

I have a disability, or so they tell me (wink), and I’m not liking the sound of the life I described above. How about you? I mean we all have areas that could use work, disability or no. You know … Because We’re Human! So I completely understand that therapy, any kind(s), may be necessary and our family is certainly not exempt! I do feel confident in saying, however, that no matter the mildness or severity of our disabilities (or lack thereof) we still want to have fun! And, yes, you guessed it… we still want to be happy!

The truth of the matter is that at the end of my life, I don’t want to look back and realize that I spent it trying to ‘make my kids better.’ Because in my eyes (and theirs) there is nothing wrong with them. They are not broken -- I am not broken -- no ‘fixing’ necessary, thank you! Maybe some tweaking here and there (winking again), but we’ll work towards things we can accomplish and do our personal best! And the things we can’t … well, nobody’s perfect. It’s about each of us being happy with who we are as individuals. And while I see great things ahead for my kids, because that’s what parents do (still winking), none of it will mean a thing if at the end of my life they aren’t…


A version of this post was previously published at srsalas.com

Tuesday, April 9, 2013

What Happens When You Devalue People

N. M. Silber

We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing your Autism Acceptance posts and pictures all month long. If you want to participate, contact us at thinkingautism at gmail dot com. -TPGA Editors

Trigger Warning: Situations described could cause a stress related response in individuals who have been restrained, especially those overcoming PTSD.

What happens when a group of people is systematically devalued? Society is given permission to treat them differently. They are denied organ transplants and medical care. When they are murdered people empathize with their killers. When they are unable to force themselves to look and act and react to a world that they experience and perceive differently than the masses they are mistreated, locked in closets, restrained, shocked with electrical current.

Once upon the time I was a public defender. (All the people who want to start leaping to conclusions about me should know that I survived having special ed “supports” as a kid.)  As I wrote, once upon a time I was a public defender, and I saw the criminal justice system up close. I SAW how people who were schizophrenic, bipolar, Autistic, or had other disabilities or differences were treated. I saw them devalued when they were victims. I saw them devalued when they were accused of crimes. I saw them warehoused awaiting psych evals, thrown into the general prison and jail populations where they were abused while guards looked the other way or abused them themselves.

I represented a man who was diagnosed with schizophrenia and an intellectual disability. I’m not a mental health professional and I can’t diagnose people but I am Autistic and I thought that he was too. He had been arrested because he was staying in a homeless shelter and another person stole something he valued and he hit that person. Someone called the police and they came and tried to restrain him. (He was also black by the way and there was plenty of talk about how “dangerous” he was even though the cops who held him down were bigger than him.) He tried to fight his way out of the hold. Now he was charged with a felony -- assaulting a police officer even though the cop was unhurt.

It was hard to defend him because he did not communicate well under the best circumstances but when I saw him he was frightened and hurt. When we got to court I heard people laughing – cops, even a prosecutor -- mocking him while he sat there restrained. They assumed he didn’t understand. People talked about his future, his freedom, like he wasn’t there and they laughed at him. I was very angry and I made them stop but I knew it would start again as soon as his “bitchy” lawyer left.

This man had struck out at a person who stole something of value to him. That person was also unhurt, incidentally, and he himself had a record for assault. I tried to get him out, but we had to wait until he could be evaluated. That took a long time. I arranged to get him a bed in a halfway house and I had people who would work with him but it didn’t matter. He had to wait.

When he was evaluated the psychologist testified that he could become violent again under similar circumstances -- I guess he meant if he were held down by cops. So he was denied access to the halfway house. Nothing I said or did mattered. They wanted to send him to a state hospital with a lock-down for violent offenders. I fought for almost TWO YEARS to get him out and when I retired I turned his case over to another public defender.

So, no happy ending folks. Sorry. Why am I telling you this depressing tale? Because this would not have gone down this way if he had not been different. It wouldn’t have happened if he were seen as even just as valuable as the already devalued poor homeless person who he was.

I am going to implore people one last time -- for that man, and everyone else who is different. We are not “broken.” We are not “lost.” We are not “LESS!!!” When you describe us that way you give people permission to treat us that way. My client wound up in jail because he wound up homeless.  It can happen.  It does happen.  Be a part of the solution. Assume that people understand and deserve to be treated with dignity. Then make sure that the word gets out.

Previously published at extemporarysanity.wordpress.com

Monday, April 8, 2013

What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism

Ariane Zurcher

We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing your Autism Acceptance posts and pictures all month long. If you want to participate, contact us at thinkingautism at gmail dot com. -TPGA Editors

What follows are some of the things I wish I’d been told (and given) when we learned Emma was Autistic. These are the things, in retrospect, I wish all those doctors, specialists, pediatricians, therapists, and people who dedicate their lives and careers to autism had told me, but did not. I believe our lives would have changed dramatically had we been told even a few of these things. It is my hope that for those of you who may be at the beginning of your journey with an Autistic child, this list might help you avoid some of the many, many mistakes we made and a great deal of unnecessary pain.

1.  Seek out the work of Autistic people. Most of the work I’ve listed was not available when my daughter was diagnosed, but it is now. Take advantage of all that is out there, these people are leading the way.  If I had to choose just one thing that has had the single greatest impact on my life and the life of my daughter, it is these people.  My gratitude to all of them doesn’t come close to covering how I feel.

a)  Blogs by Autistic people:  This is a partial list.  To see more blogs go to the blogroll ‘here‘ as well as each of these blogs often feature blogrolls as well: A Quiet Week, Autism Experts, Autistic Hoya, Chavisory, Cracked Mirror in Shalott, Emma’s Messiah Miracle of Music, Evil Autie, Gareeth, I’m Somewhere Else, It’s Bridget’s Word, Just Stimming,  Kyriolexy, Musings of an Aspie, Olliebean, Paula Durbin-Westby’s Blog, Radical Neurodivergence Speaking, thAutcast, The Third Glance, Tiny Grace Notes, Yes, That Too

b)  Watch these two documentaries:  Wretches and Jabberers and Vectors of Autism

c)  Read books written by Autistic people (again this is just a few of my favorites):  Barb Rentenbach’s, I might be you, any book written by Judy Endow, Peyton Goddard’s, i am intelligent, Loud Hands: Autistic People, Speaking, any book written by Tito Mukhopadhyay, S.R. Salas’s, Black and White, Michael Scott Monje Jr.’s Nothing is Right and A Field Guide to Earthlings: An autistic/Asperger view of neurotypical behavior

2. Autism is not a disease. Read Don’t mourn for us by Jim Sinclair. This may take some time for you to understand. It’s okay. Get the help and support you need so you can better help your child.  Try to think of autism in the same way you think about any groupings, a Mac and a PC, fiction, non-fiction, memoir and young adult, a shirt, a pair of pants, shoes and socks, a microwave and a gas heated oven. Autistic, Neurotypical, Allistic, (or my personal favorite, coined by a friend) NT-NOS, we are all human beings. Try not to judge one over another. Judgment will not help you help your child.

3.  Presume Competence. (This post helps explain what presuming competence means.) If a therapy and/or professional does not approach your child with a presumption of competence, please consider finding one who does. Tremendous long-term damage can come from not presuming competence. Rethink how you view communication. Listen to your child, not just to words, but to body language, facial expressions. You may be surprised by the ways your child is communicating despite not being able to do so verbally. Teach her to point with her index finger, first with support if needed and as time goes on, fade the support. Give her the appropriate tools and support so that she can learn to type or communicate by pointing to a letter board. There are many wonderful iPad apps that can help with this. Begin with sequencing games and colored tiles, or if she’s musical, notes. Join them together to make patterns. Show her first, have her mimic.

4.  Do not speak of or about your child as though they cannot and do not understand or hear you  (read Barb Rentenbach’s book for more on this). This is something we did without thinking for years. Sadly it is not the only regret I have, but one of many. Still it is worth repeating. Chances are your child can and does understand what you’re saying even if they do not show any signs that you recognize.

5.  Throw out everything you think you know and question everything. There is a massive amount of misinformation/myths disguised as truth and fact regarding autism. You may hear people say things like “They are in their own little world,” or “they are imprisoned behind their autism.” These phrases are perhaps an accurate reflection of what non-Autistic people feel about the Autistic person in their life, but they serve to divide rather than unite and ultimately serve none of us. Be suspicious of anyone who says they know what causes autism or how to “treat” it.  Disregard any organization that describes autism and your child as tragic, an epidemic, a burden or any other word generally reserved for warfare.  If you read or hear something that causes you to feel fear, walk away, it is most likely inaccurate and intended to make you afraid. None of us are able to help our children when we are terrified. Fear can cause us to make decisions we will later regret.

6.  Set your child up to succeed. My daughter is extremely sensitive to criticism. Saying “No!” or criticizing her does not help her learn, but instead makes her feel badly about herself. Encourage her with smiles and by asking her to try again.

7. Do not try to make your Autistic child behave like a non Autistic child, instead encourage your Autistic child to be the very best ______ (fill in your child’s name) they can be. For more, read this.

8.  Avoid comparing your child to any other child, Autistic or otherwise. I have struggled with this one and continue to. All I can say is, this is a work in progress. I hope one day to “know” this and refrain from doing it as it gets me into “compare and despair” thinking faster than anything else.  Emma is Emma. She is best served when I remember this fact.

9. We parents are fallible. We will make mistakes. I’ve made dozens. I wish I hadn’t made quite so many. But I have. If there is one thing I know without a doubt it is this -- I will make mistakes, I am human. I can admit my mistakes, tell my daughter how sorry I am, make a living amends to her by doing everything in my power not to repeat the mistake and continue to move forward without beating myself or anyone else up. As my wise mother once said, “Show and tell your children over and over how much you love them, and one day they will forgive you.”

10. Get to know Autistic adults. One of the single biggest misperceptions surrounding autism is that autism is only seen in children. Autistic adults are often our best teachers and  many of them are leading the way so that our children’s lives might be better than their own. These people are courageously and tirelessly pushing back against the deeply ingrained prejudices, biases and misperceptions that are rampant within our society.  (See #1)  It is my goal to honor these people who have beaten a path ahead of my daughter, so that she may more easily live in this world that so often will not and does not accommodate her or give her what she needs to flourish. They are speaking out, let’s all get behind them and give them the microphone so that more can hear what they are saying.  One day, the person holding that microphone might just be your child!

The year after Emma was diagnosed ~ 2005
Em - 2005

Previously published at emmashopebook.com.

Friday, April 5, 2013

Why Autistic Friends Matter

We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing your Autism Acceptance posts and pictures all month long. If you want to participate, contact us at thinkingautism at gmail dot com. -TPGA Editors

It matters when you meet someone who gets you. When you see someone who moves like you. When you're with someone who understands what you like and why, even if you've only known each other for thirty minutes.

Leo felt instantly comfortable when he met Zoe (and Julia) for the first time, and hung out with them at a local aquarium. They were instant friends. Leo got to be his own genuine happy autistic self thanks to Zoe and Julia being their own warm lovely autistic selves.

Autistic friends matter. They really do.

Head in lap. Watching straw flick.
Voluntary participation in elbow plucking
Interlacing fingers. (Offered by Leo only when at ease.)
Back and Forth. Heaven for Leo! Thank you, Zoe.

Photos courtesy of Steve Silberman.