Friday, April 19, 2013

Autism Acceptance Is NOT



Trigger Warning: Mentions of cure, ableism, mourning for autism diagnosis.
As March ended, I wrote a few things that Autism Acceptance is. And it's important.
We also need to be aware of what Autism Acceptance isn't. And that's what I'm talking about today.

"I love my child, but I hate his autism." That's not autism acceptance. It's not even acceptance of who your kid is. Because some of the things you claim to love are also closely intertwined with autism.

Acceptance as in the stage of grief is also not autism acceptance.

By the way, that's what Autism Speaks is talking about here:

Acceptance
Ultimately, you may feel a sense of acceptance. It's helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism. Accepting the diagnosis simply means that you are ready to advocate for your child.
The period following an autism diagnosis can be very challenging, even for the most harmonious families. Although the child affected by autism may never experience the negative emotions associated with the diagnosis, parents, siblings and extended
family members may each process the diagnosis in different ways, and at different rates. 

That's not autism acceptance. That's going through mourning for a kid because they have a different neurology than you do.

(Most of the things Autism Speaks has tagged with autism acceptance are nothing of the kind. Just so you know.)

Biomedical treatments for autism are not autism acceptance. Medical treatments for the other conditions that an autistic person might have are good, but completely irrelevant to the question of accepting autism or not, just like the those conditions aren't actually autism. (No, really. Whatever it is that's up with my stomach isn't autism, nor is my history of asthma, nor was my shellfish allergy. No, I don't know how a shellfish allergy going away works, but it happened and I don't really care how it happened.)

Insisting that autistic people must learn to pass for neurotypical while also claiming it's fine to be autistic isn't autism acceptance.

Telling Autistic people who have learned to pass because they had to that this means they aren't really Autistic isn't autism acceptance either.
Insisting that you can speak for all Autistic people isn't autism acceptance no matter who you are. That you can say some things which could help all Autistic people and trying to do so? That could be autism acceptance if the things you're saying fit under it. (Remember, we all communicate for ourselves, you can speak for the benefit of someone else, but not for them unless they have said you can.)

Demanding eye contact is not autism acceptance.

Demanding quiet hands is not autism acceptance.

Setting "indistinguishable from one's peers" as the goal is not autism acceptance.

Conflating life skills with passing for neurotypical is not autism acceptance.

Speaking of cures is not autism acceptance. 
(Cures for things that aren't autism are kind of irrelevant to autism acceptance, so this still holds.)

Comparing rates of autism with rates of cancer, AIDS, other things that are actually diseases? 
Not autism acceptance.

Being proud of your own Autistic self, then turning around and insisting that a certain other group of Autistic people needs a cure? Not autism acceptance.
   
Autism Acceptance Is NOT was first posted here.

Note: Comments have been turned off for this post. I forgot to do it when I posted it. Most reprints do not have comments.

Autism Acceptance Is...



Autism Acceptance is saying that autism is not inherently bad or inherently good. It's saying that to make such a statement is just as nonsensical as classifying neurotypicality as inherently good or bad. It's accepting Autistic people and autistic people and people with autism as people who are wired differently, and that's fine. A cat is not a defective dog. A linux computer is not a defective Windows machine. An Autistic person is not a defective neurotypical.

Autism Acceptance is saying that Autistic people are not just like neurotypical people, that we never will be, and that's OK.

Autism Acceptance does line up well with what many neurodiversity advocates aim for- we are wired differently, and we support the strengths people have and we find ways to accommodate for the weaknesses, both those which are considered disabilities and those which are simply considered differences.


Autism Acceptance means supporting the Autistic person in learning the things they want to learn and in gaining the skills they need for what they want to do.

Autism Acceptance is the radical assertion that at the level of broad, overarching principles, what Autistic people need isn't that different. We need to be accepted for who we are. We need to hear that we're OK, we need to hear that the things we have trouble with don't make us broken or lazy or horrible people. We need people's actions towards us to reflect that. We need people to listen when we say we need help, and we need people to listen when we say we don't. We need to be taken as the whole people that we are, and we need to be met with the understanding that we are the experts in our own lives and abilities.

Would you want to go without those things? No, I didn't think so.

Regardless of neurology, people need those things.

Autism Acceptance is just reminding us that Autistic people are people, and that as such, we need those things too.
This is a reprint from Yes, That Too

Thursday, April 18, 2013

Red Headphone Cupcakes for Autism Acceptance Month

Red Headphone Cupcakes


AUTISM ACCEPTANCE MONTH
Red Headphones for AutismApril is Autism Acceptance Month. Orchestrated by Paula Durbin-Westby in 2011, the first celebration of this special month was devised to shift the focus from autism awareness to acceptance. Typical autism awareness campaigns of late are often times insensitive and maligning to the autism community. It was natural progression then, to affirm a positive light on autistics and autism.
The following story was first published in August of 2011. As we are now halfway through Autism Acceptance Month it’s an ideal time to share it again; to go back to the shift when acceptance gained momentum.
Autism acceptance has a long way to go. But the account of how a town embraced one of its own is a fine example of how it can be done. Read on…

Fondant Red Headphones

Nearly twenty-five years ago John and Lori Horton said, “I do.” But today, as their Silver anniversary approaches, the couple will renew their wedding vows at three o’clock in the afternoon on the water’s edge of a San Diego beach. Though I’ve only known John for several months, I feel as though I’ve known him and his family for many years.


Mr. & Mrs. John Horton
Mr. & Mrs. John Horton, 1986

With John at the helm, he and Lori are the heart and soul behind RED HEADPHONES FOR AUTISM, a community page on Facebook. The premise of the community is simple: Promoting autism awareness and acceptance through a fun and positive life filled with love and autism, it’s not always perfect but its life. …But its life, the one simplistic qualifier that says it all. Life is, after all, experience. And while we are all unique individuals, we often times have similar experiences. Whether the experiences bring joy, make us sad, move us forward or take us a giant leap backwards, they are moments in our lives on a ticking timeline. It is in the sharing of these experiences that we build communities, a scaffolding of human bonds that holds us together, holds us up.


Headphone Fabrication

The autism community—individuals, their families & friends, educators, therapists et al who live with autism, relies upon the support of its members for a better quality of life. A life where uniqueness is celebrated, where different is beautiful and the gifts embedded within the individual are proudly displayed and utilized as a productive, contributing participant in society. But to be aware of autism is not enough. Autism must be embraced through global acceptance which is free from judgment and criticism.

9 Fondant Headphones

John and I met via Facebook through mutual friends of a similar autism awareness page. It didn’t take long for us to bond as we are fathers of autistic sons—that, and he’s a genuinely nice guy. Many of you have met my son Devin in previous posts, but you haven’t met John’s son, Derek, who is the inspirational source for Red Headphones for Autism. Derek is a young man of 20 who has an affinity for red headphones. Red headphones and Derek are as synonymous as Sinatra and the Fedora. And what a glorious shade of red they are too!


Derek
Derek

As the story goes, in the community where the Horton’s live, Derek is popular among the citizens who easily recognize him by his signature red gear when he’s out and about the town. Folks warmly embrace Derek, often calling him by name, with a smile and a friendly wave. And while Derek may be short on words, I’m told he’ll return a twinkly smile to passersby. Was it easy for Derek in establishing himself in society? Of course not, but the strides he’s made to date is attributable to his family and friends among townspeople who are willing to accept Derek for who he is—a young man who has the capacity to love, to emote feelings, has interests, fears, desires and contributions to make no matter how big or small just like anybody else. Do challenges lie ahead for Derek? Yes, however in a community where acceptance is well underway, I suspect those challenges might be a bit easier to tackle with that level of support in place. It’s no wonder then that red headphones were chosen as the symbol of Red Headphones for Autism.

Red Velvet Cake Batter

This past spring when John posted a status update mentioning summer plans to come to California including a stop in my area, I smiled at the thought of visiting with him and his family. A couple of direct messages and a few months later, that day came this past Sunday at the California State Railroad Museum in historic Old Sacramento―one of Derek’s favorite places. As we approached the museum entrance, it was easy to spot our friends, not from physical identifiers as one might think, but from the familiar vibe of the party of three waiting for the door to open.


John & Brooks
John (L) and Brooks (R), August 7, 2011

While our visit was everything I had hoped it would be, friends sharing a good time, swapping stories of our children and life experiences, the Old Sacramento location was not the only historic thing happening that day―this particular day marked the occasion of friends meeting face-to-face for the very first time, but the union was as if we had known each other for many years.

Red Velvet, Red Headphone Cupcakes
RED VELVET CUPCAKES with FONDANT RED HEADPHONES
Prep Time: 1 hour, 30 minutes
Cook Time: 20 minutes
Total Time: 2 hours
Yield: About 30 standard size cupcakes
Serving Size: One cupcake
RED VELVET CUPCAKES with FONDANT RED HEADPHONES
Red Velvet Cupcakes are enormously popular and the flavor afforded by this recipe makes it easy to understand why. They were the perfect cupcake to showcase the red fondant headphones. Enjoy!
Adapted from McCormick.
Ingredients
    Cake:
  • 1 1/2 cups all-purpose flour
  • 1 cup cake flour
  • 1/3rd cup unsweetened dark cocoa powder
  • 1 teaspoon baking soda
  • 1/2 teaspoon salt
  • 1 cup (2 sticks) unsalted butter, at room temperature
  • 2 cups sugar
  • 4 eggs, at room temperature
  • 1 cup sour cream
  • 1/2 cup whole milk
  • 1 ounce liquid red food color (usually a full standard bottle - check content weight)
  • 2 teaspoons pure vanilla extract
  • Frosting:
  • 1 package (8 ounces) cream cheese, softened
  • 1/4 cup (half stick) unsalted butter, softened
  • 2 tablespoons sour cream
  • 2 teaspoons pure vanilla extract
  • Pinch of salt
  • 1 pound (1 box or 16 ounces) powdered sugar
  • Fondant Red Headphones:
  • About 1/3rd pound prepackaged white fondant
  • Red gel food color
  • Black gel food color
  • A teaspoon of corn syrup and a small, clean paint brush
  • Tools & equipment for coloring, rolling, cutting and shaping fondant
Instructions
  1. Preheat the oven to 350˚F.
  2. Mix the flours, cocoa powder, baking soda and salt in a medium bowl; set aside.
  3. Using an electric mixer, beat the butter and sugar in a large bowl on medium speed for about 5 minutes. The mixture will become pale in color and fluffy. Beat in the eggs, one at a time, blending well after each addition. Mix in the sour cream, milk, food color, and vanilla. Gradually add the flour mixture in two to three parts blending on low speed until just incorporated. Scrape the bowl after each addition. Carefully spoon the batter into paper-lined muffin pans filling each cup 2/3rds full, but no more.
  4. Bake 18 to 20 minutes. The cupcakes are done when a toothpick inserted in the center comes out clean. Cool the cupcakes in the pan on wire racks for about 5 minutes, then remove them from the pans to cool completely on the racks.
  5. Meanwhile make the frosting. Beat the first 5 ingredients in a large bowl with an electric mixer until light and fluffy. Gradually beat in the powdered sugar until smooth and creamy.
  6. For the headphone decorations, color half the fondant in red gel food color, the other half in black. The amount of gel used depends upon how deep you want the color. Use food safe latex gloves to knead the color into the fondant until the hue is uniform and there are no streaks. Wrap the fondant tightly in plastic while not in use.
  7. To make the red ear pieces, I pinched off a small ball of red fondant pressing it into a 1/4 teaspoon measuring spoon that was lightly swabbed in vegetable oil. This helped to attain the rounded shape I wanted and allowed for uniformity. Gently prick the formed shaped out of the measuring spoon―a toothpick is handy here. Don't be concerned about prick marks on the flat side, they will be covered. Reshape if needed. Set the red pieces aside to firm up by air drying for a couple of hours.
  8. Roll the black fondant to slightly more than 1/8th-inch thick. Cut 3-inch long strips of the fondant that is uniform in width. These will be the headband parts. When you've cut enough headbands to accommodate the ear pieces, roll the remaining black fondant to a thickness to about 1/16th of an inch. Use the wide end of an icing decorating tip to cut circles as close to the same diameter as the measuring spoon. Gently poke the round cut piece out by inserting a toothpick into the opposite decorating end of the tip. You will need as many of these black round cut outs as you have red ear pieces.
  9. Lay two red ear pieces rounded side down and about 3 inches apart onto your work surface. Lightly brush the flat side with corn syrup (this helps the pieces to adhere). Bridge the two pieces by placing a 3-inch headband across from ear piece to ear piece. The ends of the headband should hit the center of the ear pieces. Gently press the bands onto the ear pieces. Lightly brush the pressed headband ends with corn syrup. Place a black round cut out directly over each ear piece sandwiching the ends of the headbands in-between. Gently press the round cut outs into place, sealing around the circumference edge of the headphones as best possible. If desired, tool the surface of the black round cut outs for added headphone detail.
  10. Leave the assembled headphones lying flat on a solid surface to air dry for about an hour. If you don't have plastic tube racks designed for fondant/gum paste shaping, use an empty cardboard tube from a paper towel roll that has been covered in foil or plastic wrap. One at a time, gently lift an assembled headphone (they will still be pliable, but more firm than when they were put together) and drape it over the cardboard tube. The red ear pieces should be on the outside and they should suspend evenly over each side of the tube. Allow these to dry undisturbed overnight and loosely covered. Prepared headphones may be stored in an airtight container at room temperature for 48 hours until ready to use. Do not freeze.
  11. Assemble the cupcakes. With a filled decorating bag fitted with a large round tip and holding it at 90⁰, pipe a steady stream of frosting directly over the center of each cupcake until the frosting flows near the edge. Stop the flow and lift the tip to get that pointy curl. Place a headphone on top of each cupcake. If not consuming them right away, store cupcakes in an airtight container in the refrigerator, but return to room temperature before serving.

In meeting my friends for the very first time, I knew I wanted to bring something special. So I quickly settled on an idea to express my appreciation for them, something that would elicit a smile. And that’s exactly what these delicious cupcakes decorated with the symbol that stays close to their hearts did. While it was Facebook that brought us together, it’s the ensuing friendship we share that will keep us that way.


This is a reprint from http://cakewalkr.com/red-headphone-cupcakes/  Check out the wonderfully beautiful cakes on the site!

Wednesday, April 17, 2013

Autism Acceptance Profiles: 1. My Friend J

It’s autism acceptance month, and in honor of that, I am going to share some real-life examples of (neurotypical) people who accept me (autism, geekiness, and everything else), just for who I am. No ifs, ands, or buts. These people have something that the rest of the world can learn from.

I’d like to introduce you to my good friend, J. He is a PhD student in a scientific field that is not really related at all to my scientific field, but is at the same university as me. We were introduced by a mutual friend, because she knew we were both going to be at the same place for grad school. I’ve talked about J before – he is my grocery-store buddy.

J is a stereotypical absent-minded scientist – I’m constantly reminding him what we’re doing and where we are going. It’s a running joke between us. He’s also a fierce feminist and is constantly angered by the crappy things people are constantly doing to each other. J is very much someone who believes 100% “a person is a person, and that everyone should be treated with respect, regardless of anything”. But he doesn’t just say he believes that, he lives it. And he lives it in a more honest way than I’ve ever seen anyone do so before. With some people, getting angry over injustice is about performing an act to get others to see that you are a “good person”. With J, getting angry over an injustice is a genuine, visceral response that has nothing to do with how others perceive him, or anything to do with performing the socially acceptable dance of “look, I’m a good person, really”. It’s his honest, knee-jerk response, regardless of rewards or consequences therein. And that’s what makes him such an awesome person.

When I first met J, we instantly clicked as friends. I felt comfortable and relaxed, and didn’t try to “pass” as neurotypical in front of him (I usually put effort into this when I first meet people, because I’ve learned that not doing so usually ends significantly worse). As a consequence, he saw the stimming, the spinning in circles, the constant obsessions over various textures of clothing, and everything else, right from the start. We started grocery shopping together almost immediately – I have a car, he doesn’t, and you can’t get anywhere in this town with any amount of efficiency, unless you have a car, or you’re willing to walk >1 mile with groceries on either end of a long bus ride. So I offered, and he accepted, and that was the beginning of a wonderful friendship. Since we first met, he has been great with all my little quirks.

I’ve talked before about how one of my stims is to repeat everything that is being said, or to sign the word I’m currently perseverating on, using American Sign Language and finger-spelling (see post: My Hands are Echolalic). Well, when J noticed that, instead of wondering what my hands were doing, or saying it was bad, he said “woah, is that ASL?” – he’d always wanted to learn sign, and when I told him that my hands were spelling things, he didn’t bat an eye. He was fascinated, and asked a bunch of really good questions about what they were saying. It ended with me teaching him the alphabet. Now he tries to read my hands sometimes. And when I’m tired and not processing speech, sometimes I can fingrespell to him.

In the grocery store, I memorize where everything I need is. I also memorize the usual pricing schemes. We often so to several stores, because there are different products needed. As a consequence, some items overlap. I mentioned J is an absent-minded scientist. When we go shopping, we have a deal. I tell him where everything is and how much it costs, and whether it is better to get it at one place or another. He deals with the people for me, and helps keep the sensory overload to a minimum. We each have our own unique skillsets that make the trip faster and more painless for the other. Combined powers.

We also go to costco together. Now I love costco. I love the big boxes, with their giant aisles and super-organized shelves with thousands of things. I think they are fascinating. But costco is nearly always packed with people, so I have to go during quiet times. I should also mention that I am obsessed with stuffed animals, have 323 of them, and have a super-soft spot in my heart for them. All of them. And I can name them all and tell you how and when I got them. But I digress. Anyway, one day we were on a costco run, and costco greeted us with a bin full of giant stuffed bears. Immediately I abandoned the cart to make a bee-line towards it, and J smiled. He took the cart and followed me to the giant stuffed bears. I greeted them, and told them I wished I could take one home. But I knew I probably shouldn’t.

I then spent the next hour, weaving through the store with J, constantly repeating “giant stuffed bear… giant stuffed bear”. I couldn’t get them out of my head, and there was this one who had been tossed aside and not in the right spot, and I had to take him home. Giant stuffed bear. Talk about perseveration. Giant stuffed bear. Anyway, rather than be annoyed, as most people would have been, J continued to smile, and encourage me. Giant stuffed bear. He carried on conversation with me, keeping the giant stuffed bear happily involved. We decided that if I was still obsessing when we got done with the necessary food and toilet paper shopping, that I could go back and if that one was still thrown off haphazardly, I would take it home. Giant stuffed bear. So we did. Giant stuffed bear. And I now have a wonderful, cuddly, giant stuffed bear named Ferdinand. When we got back to my apartment, I immediately pulled Ferdinand out to the couch and curled up with him (the bear, not J). J grinned and took pictures to send to me. Giant stuffed bear. If that isn’t autism acceptance, I don’t know what is.

For several months, I didn’t talk about the “autism-thing” with J. He was just content to overlook all of the things that others considered to be horrible autistic behaviors (stimming, failure to eat most foods with certain textures, not speaking properly, perseveration, etc etc etc). When I was struggling, he was patient and never critical. When I was perseverating or even scripting, he happily went along. He has always met me where I am at. But one day, we were with someone else, and they got snappy and I got defensive, and I snapped “I’m autistic, that’s why!” at them. A couple of weeks later, J and I talked about autism a bit. He said he didn’t think I could possibly be autistic. I didn’t fit what he knew about autism. So then I brought up my clothing, my eating habits (which he’d been dealing with for months), my stuffed animals and the Giant Stuffed Bear perseveration, my obsessions, my fingerspelling, stimming hands. I brought up the fact that I don’t communicate well in groups, and how clumsy I am, and the fact that I’m apt to lecture him with lists and things I’m currently obsessing over (like that moment when I started explaining how I was autisitc, or when he asks about things related to my research). And a number of other things that are all indicative of autism. All things he’s seen me do constantly since the day we met. And his response to all of this was the following:

“Huh, that’s interesting. I really didn’t understand what autism is at all. I’ve never met an autistic person before. Thanks for explaining. I don’t think of those things as deficits or symptoms or anything, they’re just what make you, YOU. And that’s the best part of hanging out with you, is that you are an interesting, unique person, who has a bunch of awesome traits, is fun to hang out with. I don’t care if it has a name or not, I wouldn’t change anything about you.”

And he hasn’t. He’s never tried to convince me to do something I can’t. He’s never criticized me for any of it. He’s asked me if things are ok or not when he doesn’t know (like going to the stores in a different order, or watching a particular movie or show, to eating various foods), and he accepts the answer “no” as easily as the answer “yes”.

And that, my friends, is what autism acceptance looks like.

———————————————
Author’s note: This is the first in a series of Autism Acceptance profiles in honor of Autism Acceptance month. I have been lucky enough to meet and interact with a number of wonderful people in my life who really embody autism acceptance, and I want to share their awesomeness with the world. Read more about this series here.


This article is reprinted from:
http://thethirdglance.wordpress.com/2013/04/07/autism-acceptance-profiles-1-my-friend-j/

Autism Acceptance Month - A rallying cry

by Samantha Bodwell

It is April again and we are celebrating the second year of Autism Acceptance Month in Northern Virginia, thanks to my continued efforts on the Acceptance front! 
 
As you recall, due to my suggestion and further urging the board of the Autism Society of Northern Virginia, my board, voted unanimously in November of 2011 to change April to Autism Acceptance Month.  This is a milestone in Autistic History.  An Autistic on a board of Neurotypicals was able to change their minds and real tangible change has come out of it.  All other Autistic led movements were born/exist on the Internet, this one never was.  I am proud to have suggested Autism Acceptance Month and seen it come to fruition.
 
Autism Acceptance Month is a time to celebrate and embrace our Autistic differences.  It is so much more than you accepting your Autistic diagnosis or your child’s, it is instead about society as a whole accepting Autistics for who we are, verbal or nonverbal, stims and all. 
 
Look how far other civil rights movements have come.  Blacks are now CEOs of big companies, the president of the United States, elected officials, etc., etc.  Gays are getting married in many states, elected officials, etc., etc.  Both minority groups are no longer seen as second class citizens.  People with physical handicaps are now able to work wherever they like, given building accommodations, etc.
 
The rights of Autistics are also civil rights.  We have rights too, but Autistics are still seen as second class citizens, we are continually discounted by society because we are not “normal”, but what is “normal” anyway.  Our Autistic youth are continually experimented on in hopes of “curing” their Autism from shock “therapy” to chelation “therapy” to bleach enemas to crazy diets to new drugs with horrible side-effects to the latest quack therapy having them ingest the eggs of parasitic helmith porcine whipworms to who knows what!  Autism is not something that can be “cured”, it is not a disease!  We as a society need to stop all of this quackery masquerading as science!  Stop experimenting on our Autistic youth!  No other community, disability or not, has been continuously treated this badly!  We are hated and feared; the news media of late has only made to exacerbate the situation, not improve it.  When it comes to Autism confusion about us is the norm. We need Acceptance!  Parents and caregivers murder us and society does not even bat an eye, nor do they shout that such atrocities must cease.  They instead say that the caregiver or parent had to struggle because of that Autistic adult or Autistic child and that it is understandable that they committed murder; it is never about us, only just them.  They try to rationalize it, but murder is still murder plain and simple.  No one speaks for the innocent murdered Autistics; we are just seen as expendable.  We are not expendable, we are just has human as you are, we too deserve respect. 
 
There is so much that the Neurotypical world can learn from us, we have much to share, our brains work differently from yours, but that does not mean that we are “flawed” or “broken” or “damaged”, it just means we are different and may have a unique way of looking at things.  Give us a chance to show you, you might just be surprised.  We do not need to be “fixed” or “cured”, that is not what we need, what we need is Acceptance, pure and simple.  Other groups have gotten it, but we need it more.  Ours is a hidden disability that many times gets mistaken for insanity, especially when an adult is having a meltdown in public.  We are restrained like prisoners and experimented on, we are not lab rats here to help advance science, your quest to improve us pharmaceutically is unfounded, we are not “diseased”, etc.  One looks for “cures” for diseases, Autism is not a disease.  If I blew on you, you would not catch my Autism. 
 
Statistically Autistics are either underemployed or unemployed, that does not mean we have nothing to offer to the workforce or that we are not employable, it just means that the workforce is not always welcoming to us.  Offices and other workplaces have noises, distractions, unfriendly lighting, social demands, smells, etc. that we Autistics can not handle, it is not in our “design”.  Other disabilities are given ready accommodations, but unlike, for example blindness, one set of accommodations does not fit us all, we are all unique in our Autistic strengths and weaknesses.  The solution is not for Autistics to become more like Neurotypicals, no other disability has been made to do that.  There is no way that we Autistics can become Neurotypical, we are wired differently.  The internet is littered with stories and blogs about Autistics who stepped onto the stage of life and tried their hand at “playing” Neurotypicals.  Autistics struggle through life, from sensory difficulties to communication problems, etc. the additional stress of trying to be a Neurotypical does not help, it instead hurts us.  We have our ups and downs, the downs are the worst, but the ups make it all worthwhile.  What happened to those Autistics who “played” at being Neurotypicals, did it work you ask?  No, it did not, in the end those same Autistics who valiantly tried to work in a way that they were never meant to have burned out.  It is not healthy for us to be anything other that what we are.  We are Autistic. 
 
What we need is for society to welcome and embrace our Autistic differences and not shun us or try to “fix” or “cure” us.  April as you know is Autism Acceptance Month, it is a month to celebrate and embrace our Autistic differences, those of our friends, our children, and family members.  Autism Acceptance is about society as a whole accepting Autistics for who we are, verbal or nonverbal, stims and all.  During the month of April I especially ask, beg, and plead that you work toward Autism Acceptance in your local communities, for your Autistic selves, your Autistic children, and all of the Autistic generations yet to come.  As I have mentioned in other entries, every great movement starts with a spark, now is your chance to be that spark!  Be proud of who you and we are.  We are unique and beautiful and do not need to be changed!  Nonverbal or verbal, we Autistics have much to offer society, from a smile to a brilliant discovery; all we need is a chance to do so.  We need love and Acceptance.  One can only be who he/she is, no one else.  Be you, the only YOU, you can be.  Do not try to blend in, instead be true to yourself.  No matter how hard things get we Autistics should not be dissuaded in our efforts, we need to keep working to make the world a welcoming place, encouraging others to Accept us is the way to do it.  We need more self-advocates working within the system to change things for us.  If we all do our part, we will make a better world.  Be Autistic and Proud, I know I am and I would not want to be any other way. 
 
A VERY happy Autism Acceptance Month to one and all!!
 
Samantha Bodwell – Autism Acceptance Digest  https://plus.google.com/117870784963099546718

Tuesday, April 16, 2013

Listen Up! ASAN's PSA for Autism Acceptance Month

ASAN has released a PSA! It’s called Listen Up, and it’s on Youtube now.

Go watch it and help make it go viral. 

And then, quoting from ASAN-

"But that’s not all – if you want to see Listen Up aired on television, both locally and nation-wide, we need your help for that, too.

Getting a PSA shown on television is highly competitive, so the more people who contact the national networks, the higher the chance they will listen. That’s why we’re providing you with information, detailed instructions, and the support you will need to help us email and tweet at both local and national networks.

You can use this factsheet to learn how to contact your local news station, and this factsheet to learn how to contact national networks.

And, if you have any clarifying questions, comments, or concerns,  please email us at acceptance@autisticadvocacy.org. We want to hear from you, offer any support and assistance that may be needed, and make sure we know which stations have been contacted and which have responded."

See the original link here:

http://www.autismacceptancemonth.com/listen-up/ 

Monday, April 15, 2013

Autism: Awareness/Alarmist/Acceptance/Activism: The Next Generation.....


by Jane Strauss

Earlier in April one of my Facebook friends asked if awareness didn't always lead to acceptance.  This is a common misconception.  My answer, of course, was NO.  When awareness is brought up in an alarmist tone ("Scared yet?") it leads to fear, disgust, even hatred (Many "people with Aspergers should die"  or similar sites popped up online in the wake of a horrific mass shooting incident last year.)  A good example of this type of alarmism surfaced in some satirical "Neurotypical Awareness" posters on the Web, designed by a well-known blogger and Autism activist (Example here: http://www.disabilityandrepresentation.com/2013/04/04/neurotypical-awareness-its-inexplicable/)  What is most ironic is that apparently a number of people have not understood the irony here, especially interesting as some "experts" who are not on the spectrum claim that we Autistics are always literal and are incapable of understanding irony or sarcasm.

Yes, awareness of Autism, or of anything, is needed before it can be accepted.  Hard to accept what you don't know exists, right?  Also wrong.  At our synagogue, many people don't know what our son "has", only that he is in some way unique and behaves differently from the way they might expect a 15 year old to behave.  Letting them put a particular label on him will not change their acceptance of him, which has been indeed, very hard-won.   At least now the leadership does not tell the Rabbi to call us before a big event or "simcha" and ask that we stay home.  And I am still not "out" as Autistic to the majority of the congregation -- nor do most of the people who know believe the label.

Visitors, on seeing how my son relates, and the role he plays at the synagogue, almost always ask "Does he have (fill in the blank)?", filling it in with some (often rare, often genetic, and generally linked with severe cognitive delay) condition of which they are aware.  Filling in the blank with "autism" would really not change the situation, or their opinions (often wrong) of my son and his capabilities.   It would merely layer on top of their observations the stereotypes of autism pushed in the media.  Whoever my son is, he is NOT "Rainman", Adam Lanza, Temple Grandin, Ari Ne'eman, Carly Fleischmann, or any of the myriad people whose names come up on a Google search of autistic/autism.  He is himself, a unique individual.  Neither he nor I fit the stereotype of general lack of or robotic speech, static facial expression, or constant stimming in vogue based on much media coverage.  That does not make us any less on the spectrum, merely affirms the truism that "when you have met one autistic, you have met one autistic."

Acceptance - that may be key. But what is acceptance? Some have told me, or acted as if, acceptance means having no expectations of a person ever changing in any way. My response, especially when this refers to a young person, is "hogwash!" this is not acceptance, it is condescension at best, and a self-fulfilling prophecy of failure at worst. It is the attitude referenced by one of my daughters, a licensed Special Education teacher, when she announced that she was changing direction, entering the Early Childhood field, because "I want to work with and help kids BEFORE the system has given up on them!"

Some have said that acceptance is ignoring any difference and pretending a person has no challenges. This begs the question and ignores reality, which is that we are all different, we all have our strengths and weaknesses, and we all need to attend to both in order to learn and grow.  This type of "acceptance" is most akin, in my mind, to mainstreaming with no supports and then wondering why the plan didn't work.  It'[s the first cousin to wondering why the friend who just lost their job, had their car totaled, and ended up homeless might be a tiny bit depressed - well, heck, in such a situation they would have to be catatonic NOT to be a bit down at the mouth.  It's far different from the first assertion, in that it does not eliminate expectations, and yet the same in that it ignores uniqueness.  It's also the same as the first assertion in that neither provides any supports for a person to be able to learn, grow, or reach self-set goals, and that both approaches disrespect both reality and the person they allegedly "accept" as an individual.

As an autistic myself and the parent and partner of others, I put real Acceptance at a third and separate point on the plane, one rooted in reality, providing needed supports, and maintaining expectations. It is also based in the apparent mantra of my life: Picking my battles. 

Acceptance is:

  • Looking at the person in front of you and seeing who they are, what they want to do or be, and what barriers may exist
  • Asking them what their goals or needs are if you cannot tell, and asking them if you have it right if you think you know
  • Presuming competence and listening to what those goals or needs are
  • Asking how they would like to be helped if they do
  • Respecting their right to try and meet those goals, even if it means failing a time, or two, or ten.
  • Participating in their  life in the same way in which you would for any friend/child/student/partner (or whatever your role is.....), which, of necessity, means your role will be different with a young student or a child than with an adult
  • Realizing that all people are not alike, that outside Camazotz (the dystopia in A Wrinkle in TIme, in which Judge Rotenberg Center - like electric shocks are given kids who bounce balls outside an accepted rhythm)  shaping behavior to be identical is not an appropriate goal, and that actions often speak more loudly than words - in fact, that all  behavior is communication
  • Giving people space to be who they are, with all their peculiarities, actions or fallibility

If you would not try to change the behaviors of a person not labeled autistic in similar circumstances, trying to change an autistic person's behavior is NOT Acceptance. 

During the year when I was finally properly labeled as being on spectrum, i got a stellar example of this principle.  I had been working with an "advocate" at the local unit of one of the big national nonprofits professing to help families and people with "cognitive and other developmental delays".  the reason I was getting help was to file a complaint about disability related discrimination against me and others in my family due to disability.  And yes, I was angry. 

It was OK for me to be angry until their office staff found out that not only was I the parent of a "child with developmental delays" but I was a "person with developmental delays " myself.  Suddenly, I was ignored when angry.  Their staff, with limited skills, tried to "behavior mod" me out of expressing anger.  It not only did not work, but soured me on the organization and I will not even patronize their thrift store any more.  Of course they have now jumped on the "acceptance" bandwagon, and for some years have claimed to "train self advocates," but I know the truth about them, and that the only real self advocates in my area are folks from Advocating Change Together.

So what is next, now that the large organizations that do a fantastic job of Alienating and do anything but Accept us have jumped on the verbal "Acceptance" bandwagon?

Activism.  That's the next step.  There is a growing community of Autistics and Allies on the Web, and if we can keep from letting our differences and misunderstandings tear us apart in cat fights, we can exercise tremendous power.  We can see truth and present it.  We can give those who would condescend to us  enough rope to show others what they really do.  We can build community, and as we accept each others' strengths and complement each others' challenges, we can provide others with a real working model of Assertion, Acceptance and Awareness.  In building our own culture, we increase our strength and that is the first step to true cohesion as a community.

This a reprint. The original can be found on Facebook here:

https://www.facebook.com/notes/jane-strauss/autism-awarenessalarmistacceptanceactivism-the-next-generation/10151321388125813?comment_id=27676001

Testimony to the power of Autism Acceptance


I'm grateful for all the parents of Autistic kids who have testified in their blogs about Autism Acceptance, but I have hesitated to blog about my experience parenting M, since I do not feel worthy of adequately documenting that experience and doing justice to her. My path to embracing neurodiversity and accepting/celebrating my Autistic daughter and my Autistic friends has been long and is still rocky, I continue to make mistakes as I attempt gradually to raise my understanding of my privilege, and to unpack and peel away the deep-seated ableism that has shaped the way I have grown up in our culture. I am grateful to all those who continue to build a strong Autistic "tribe" from which my daughter will be able to draw as she comes into her own adulthood, and I try every day to be a worthy ally to those who advocate so elegantly for Neurodiversity and Autism Acceptance.

A recent blog by Karla Fisher, which appeared earlier on this web site [http://autismacceptanceday.blogspot.com/2013/04/imagine-world-where-everyone-was.html], especially spoke to me in its observation that when parents embrace their children's neurodiversity rather than attempting to change them, the children blossom. There is no question that M has flourished more and more in the last couple of years as I have pushed away my former thoughts of "curing" or "defeating" Autism, and learned to understand her magnificent neurological uniqueness as an aspect of diversity that I can joyfully embrace. While I am saddened that it took me so long, I rejoice in our newfound connection.
 
And thus this image, which I offer as my testimony to the power of Autism Acceptance: M has been studying the violoncello for almost a year and a half now; her acquisition of skills has been unconventional, but it has been steady, and her justifiable pride can be glimpsed in her smile. As a musician, I rejoice in her unique Autistic connection to music, from which I am privileged to learn every day.

[description: a young Asian woman in her "tweens" is playing a violoncello with the assistance of a caucasian woman in her twenties, who is helping to hold the bow steady while the young Asian woman is guiding its motion with her hand; the young Asian woman has her fingers on the 'cello fingerboard, her feet are up on the chair-stool on which she is sitting; she is looking ahead very intently, and she has a slight and subtle smile on her face.]




Sunday, April 14, 2013

My (Probably Partial) To-Do List for Autism Acceptance Month 2013




Things I need to do.

This is my public to-do list. I had better do these things, since I am posting them!

I need to add more blogs to the blog list on the side. The past two years it contained direct links to articles and blog entries rather than to an entire blog. I have to think about whether I want to keep it this way. I think I like it this way but it could get rather long. There are so many now, whereas in the past there were not that many. This is a GOOD thing, even if I have to spend some time figuring out how to design it to be not just one really really really long list.

Keep up with submissions! (More are lined up ready to go; I just need to make sure I have gotten back to people about their status).

Post more photos that have been sent.

Interviews coming soon! I am working on the interview questions. I am trying to make them, well, PERFECT. I ought to give up on that in a day or two....