Trashing Common Misperceptions About Autism

“Trashing Common Misperceptions About Autism and Autistic People and Creating a New World” – that’s what I first wrote as the title for this post, but it’s a mouthful and given the limit on characters on twitter, I revised it.

We just returned from Tampa where Richard, Em and I went to a screening of Wretches and Jabberers and to stay with my friend Lauri and her family, or as Em referred to it, “Have sleepover with Henry three.”  Which is an apt description because we spent three nights there.  Four days and three nights of paradise.  Four days and three nights of being with another family and a whole group of friends, new and old who didn’t judge, but rather embraced, a truly inclusive group, coming together, eating, laughing, connecting, talking and typing.  It reminded me a little of my experience at the Autcom Conference this past fall, except it was far more intimate and this time my husband and daughter shared the experience with me.  For four days we were given a glimpse of paradise.   A little peek into what our world could be like, but isn’t…  not yet.

Many people believe, erroneously, that Autistic people aren’t as interested in having friends, developing relationships or crave having mentors as we, non-Autistics.  Those people have never seen Henry’s smile when he is around his mentor and friend, Tracy.

Henry & Tracy@USF

Those people who doubt, didn’t witness Emma’s tears last night when we returned home and she made me promise we would see Henry again and have another “sleepover” with him and his family.  They did not witness Henry and Emma’s laughter and joy from being around each other.

Em and Henry hanging out together by the pool

E&H -Friends

Larry takes Emma’s photograph – perhaps the single greatest compliment a person could receive.  (Amy Sequenzia is in the background.)

Larry takes Em's photograph

They weren’t there to hear Emma tearfully say last night, “Please Mommy.  Go back to Florida tomorrow?  Play with Henry again soon?”

Just because someone cannot or does not express with words their love for another in the way we might expect, does not mean they do not feel it.

Many believe that if a person doesn’t speak, or speaks with a great deal of scripting and echolalia they are not interested in communicating or have little to say.  Those people have never witnessed a typed conversation between those so-called, “non-speaking” or atypical speakers.

Harvey, Tracy, Pascal and Larry, the stars of Gerardine Wurzburg’s documentary, Wretches and Jabberers

H,T, P & L.

Emma, being the consummate performer that she is, could not resist occupying the seat Larry vacated during a break at the University of Southern Florida, the day before the screening, where she wrote for all to read – “My mom and dad hope to meet more people like Larry and Tracy.  Wow(*!)  I am stirring up a crowd(*.)  time to work with people at home in new york to show them it is the intelligent emma there…”  *punctuation was added by me for the purpose of this post and indicates the smile Em gave and the pause she took between typing “crowd” and “time”.

Harvey, Tracy, Pascal & Em @ USF

Em Types@USF

Many people are surprised to learn that even those who do not speak can have wonderfully nuanced senses of humor, can enjoy deep, meaningful friendships, have a great deal to say and are often far more profound than most speaking people are in any given 24 hour period.

A conversation between Tracy, Henry and Emma about getting on board the “inclusion typing train” the night before the Wretches and Jabberers screening.  Tracy is to Henry’s right and out of the picture frame.

H &E type

Tracy, Henry and Emma make a “pitch” to Academy Award winning director, Gerardine Wurzburg who was standing nearby!

Em types

Em takes Gerry Wurzburg’s photo 

Gerry Wurtzburg

Many people assume Autistics have intellectual limitations commensurate with their “severe” and “moderate” labels, yet given appropriate accommodations this idea has been proven wrong again and again.  Yet another reason those labels are not only meaningless, but actually damaging.

Tracy types in answer to a question from the audience about the impact the documentary and meeting monk Hogan has had on his life.

Tracy @ W&J screeening

Many people believe inclusion of Autistics in schools will “bring the other children down” and that inclusion in society will be harmful, when the truth is the opposite with many studies proving this.   (Why this even needs to be proven, is something I am still trying to wrap my mind around!)

Mary Schuh (director of development and consumer affairs at the National Center of Inclusive Education Institute on Disability) and Henry at the Wretches and Jabberers screening at the Tampa Theatre, April 6th, 2013.  Henry is now attending the public school near his home.

Mary & Henry

These are only a few of the beliefs people have when it comes to autism and Autistic people.  Yet, if people were able to witness a weekend such as the one we just experienced, I guarantee their minds would be changed and we would be one step closer to creating a new world.

*Emma approved this post.

54 responses to “Trashing Common Misperceptions About Autism

  1. Linnea Rademaker

    I see a lot of “soul” in Emma and Henry’s eyes and faces! Thanks for sharing!

    • Yes, I do too! These two are just beginning to show the world what they are capable of and it is exciting to be a part of and to witness.

    • I love this series and have read each post with excitement and hope. My little boy has (mild) autism and we have had to deal with such patronising and outdated views from teachers at his school that I am in despair! Comments such as ” All ASD children have a low IQ” and “Why should he have the same homework as the others? He could never keep up.” (I just wanted to see what he could do in the mainstream homework but his teacher acted as if I was asking for a million dollars!)
      He is a bright, curious and wonderful person who happens to learn DIFFERENTLY. This doesn’t mean he doesn’t learn AT ALL! (as some people would like to make out so they don’t have to put much effort into teaching him)
      Thank you for opening the world’s eyes just that little bit more.
      Yours, Lucy

  2. I am all misty. I understand that feeling of finding a place where you would like to stay forever. When H and I have gone to Az and had the opportunity to hang out with Laura Nagle, I have had a glimpse of that.
    Yay to Em and Henry (and everyone else)!

    Also – I must add that I appreciate the way you explained your use of punctuation in Em’s communication. It is very respectful and is used to show pause and another layer of communication.

    I also loved the “*Emma approved this post.” I think I might begin doing that as well.

    Wonderful!
    Leah

    • Thanks ((((Leah)))). I had a long talk with Emma after she boldly climbed up on the stage at the University of Southern California, proceeded to sit herself down next to Pascal, whom she adores and typed for all to see. We spoke about this blog and being public and privacy and I asked her how she felt about all of this. She said, “people need to listen to Emma, Mommy. They need to know.” So this post was a reflection of that conversation and our magical weekend!

      • How wonderful! Yay, Emma! You go, girl! 😉

        Sounds like it was a wonderful time. Thanks for posting about it! And Emma, thanks for approving this post! 🙂

        😉 tagAught

  3. So glad Emma approved and you could share with us. I heartily approve also! We have a group of friends that get together to type as well – friendship is very important!

  4. I cannot tell you how excited/happy/misty I felt reading this post. I wish I could have been there to see Em and Henry working away!

  5. Brilliant. Emma is well on her way to whatever she chooses. What an inspiring post! Thank you. And, I loved the extra photos…bonus, will share with Barb asap.

  6. Awesome evocation of so much. I feel I “know” Emma and Henry and the other characters (and what you do together) that you mention, more than I did before seeing what this post reveals. The conference screening of typing for persons using assistive technology, is mind-blowing: so obvious, so simple, so awesomely effective in rich outcome; but just a moment ago it was a possibility which had not entered my mind. The poetic power of the language-usage of Emma and Henry; a well from which to drink. The impulse to create and have a New World, it accomodating and embracing and including and honouring and celebrating Emma and Henry and others; this we must do.
    Rather than trash misperceptions, though: I think we have to offer new lamps for old; more useful perception for harmful (to Emma and Henry and autistic-friends) perceptions. I know you know that, and your post is an exemplar of what these new lamps must be and do. Emma and Henry are these lamps, or are the light these lamps shine; and you are providing the frame which allow others to see both lamps and lamplight.

  7. So excited to watch you and Richard observing the emerging of Emma as Laurie and her family is with Henry. It sure is a mountain top high and these kids will keep going with the support they get from you and their “groupies”!

    Yes, friendship is VERY important and how blessed they found each other! A perfect pair!! Tracy and Larry have done so much good in their ability to open up and be themselves; awesome doesn’t even touch how wonderful they are!

    Dr. Zack Rosetti (got his PhD from SU) was interested in friendships among individuals with autism and published his research. Maybe google his name and see where he is published. He lives in Massachusetts (I think) with his wife and baby. Very kind and caring young man.

    So happy for all to have this wonderful experience, may it continue and flow!

  8. I am teary-eyed reading this! What a magical, special weekend. Henry is missing Em, too. I will write more later, but thank you for sharing your beautiful family with us. Looking forward to many more times like these! Much love , L

  9. This this this this this this this. Standing, bouncing, flapping ovation.

  10. (To Emma) Truly, even typing, words fail me. Welcome, Emma my sister in spirit, to the public debut of your activism. Clearly you are well on your way to matching your mother someday.
    (To Ariane) Well done. You are well on your way to becoming the consummate parent advocate. And I see that even the evil empire agrees. And Emma has one of the best mommies on the planet.

    • (((Andrew))) ❤ This made me cry. Granted I’m pretty weepy, but still…

      • Ain’t nothing but the truth, ladies.

        • You speak to my sense of things in what you say Andrew. The crux is, that parenting (and caring-for and educating-to) to yield self-advocating autistically-developing children (then adults), is the mission of this moment.
          I’m basically philosophical in my approach to things. What I see in the dynamics of what you so elegantly put-on-a-pin in this post, is just so exciting; an excitement so well captured and expressed in all the lovely photographs of the event.

  11. Once again, there isn’t much I can add to this wonderful post. As I read your words and looked at the pictures I hoped it would never end (though I’m grateful you didn’t have pictures of me:). One beautiful memory that came up: Emma yelling at Henry over and over to come play with her in the pool while Henry laughed and laughed. So beautiful. Love you darlin’.

  12. This brought me so much joy to read this! And maybe a tiny bit of coveting, or just wishing, that Sunny and I could’ve been there too. So many mutual friends! Before AutCom2012 I was only friends with the DC area ASAN people. Then getting to meet you, W&J guys, Amy… It was as life-changing for me and Sunny as it was for you – these connections run deep! This is the stuff that gives me hope, within the behavior-controlled environment that I must submit myself to, until I finish 1000 hrs of internship. I can’t say anymore until it’s over. Then I will talk, more impassioned than ever before. Please everyone send me as many prayers, positive thoughts and well wishes as possible. Only 3.5 more weeks….

    • Sending positive thoughts… sending positive thoughts… ❤

      • After a good night’s rest, I’m back to my brainstorming. I wonder if Emma and Henry would be interested in doing a music video, something that could be shared on YouTube that other kids can be inspired by. I wrote a song for my music therapy sessions this week called, “Presume Competence in me.” It took some explaining what those words meant, then some persuading to let me do it. And here I am at one of the biggest autism research and intervention programs in the world… 😦
        The song is simple but the message is strong. It’s making some of the teachers and program aides here feel uncomfortable, simply because it is such a foreign topic and “presume competence” is still an unknown phrase in these circles. This whole place is lit up blue and I have to be strategic and graceful in everything I say and do. Going through some big character tests lately. So often I just want to scream and stim with my students, but I probably wouldn’t pass my internship if I did that.
        Next week I am planning in singing the Norah Jones tune “Change is Gonna Come” and play that clip from W & J. I’ve only met two people in this whole place that have heard of the film. I think showing a clip would really inspire the staff here to go home and watch it. I’m also going to loan my copy to the head social worker.
        Thank you Ariane, for communicating so well with people through your blog comments, I feel safe here. 🙂 I have to be so careful right now with what I post on my own blog and social media places. But I so badly want to reach out in fellowship to my friends and other like-minded people.

        There is a such better way, than drugs and ABA!!

        • Across a humbler role than your own, I can relate to what you say about working within a setting not always committed to the sensing and thinking that engagement with autistically-developing children spontaneously throws up for some of us.
          I use my vacations to “get back to a personal self” that I get distanced from across terms of strategically managing how I express and communicate my sense of things-autistic to colleagues and managers. I fear I often then fail to be graceful; I wish that I could be more graceful and more consistently so.
          I feel that we can make use of this our experience, to see and understand how it plays out for children to be subject to a regime that we have (gracefully articulated) reservations about. I sail as close to the wind as I can, in inviting and sharing student reservations and criticism about the provision offered them. Being strategic and elegant in dealing with such things is an important part of becoming able to advocate for yourself.
          I find I am plucking resources, such as the presuming competence idea, that I can then apply in my work, from an online self-advocacy community.
          Good luck and all strength to you in the adventure of your career.

        • Well… Emma is very much a performer! So let’s talk (with Em) as I’m guessing she will want to be involved.
          Hang in there CJ. You are and will continue to do so much good!

  13. Your steadfast earnestness and laser focus are an inspiration to me Ariane. Thank you. 🙂

  14. Barb (from DC)

    wow wow wow! Watch out world, Emma has arrived. Please tell her I especially like the pic of her and Henry by the pool, and her and Henry with Harvey and Pascal, that is a great shot!

  15. i do love seeing the real of people coming out for the rest of the world to see. i am so so so so so so happy to know of henry and emma – two kids having such a different future before them than when i was growing up. i cannot fashion words for the magnanimous feeling of all this. it is outside the boundaries of words. everyone assumes words it the top of the top to communicate – maybe because words are the top of the top for NTs. for real for all things especially wonderful words are an inadequately archaic expression we use bumbling along with no better way to share in the moment. i too wish one day to show my insides that express beyond what words can do. so many years to learn to use words and to find words are wonderful and limiting all in the same time. love love love reading this and also of seeing mary schuh in the pic.

  16. I am so excited to hear about Emma meeting more of her tribe. Wonderful!

  17. This is all such a joy! Sending all of you much love! Hope to catch up with all of you soon. Yes, as I said when I first wrote to you, Ariane. Emma will be wonderful. She IS wonderful…as are Henry and the other astounding autist and advocates I continue to meet through your glittering writings ❤ I will continue to try to comment when I can, but, for now, I must keep up with my busy performing life, and try, just try, to be as astounding as all of you are!!
    I am working on a cabaret project that will be a joyful love gift, and an openly happy expression of my life as a Musical Autist (Christy Joy Shiloh, I will fill you in soon:))
    I also have a children’s song I wrote years ago that is being arranged. I would love to explore doing a recording with Emma of this song.
    For now, there are swing dancers that need to be thrilled, and all the happy performer’s work that I have, and see in Emma’s future, perhaps, one day ❤❤❤

  18. I was thinking about how excited Emma was at being with Henry and the others and how much she had to say that she wanted to share. She and Henry and all the others there, all want the same thing as “non autistic” people want: to be acknowledged; to be heard and to be happy. They sure look like they’re happy to me. So they are really normal kids and adults with a need to do things a little differently.

  19. Coming late to this and still smiling wide. What an amazing model for the way things may, will, someday be. Thank you all! Ariane, I also can’t wait to meet you this summer in Syracuse. Will Emma be along?

  20. Pingback: Henry & Emma’s Story | Emma's Hope Book

  21. id like to se e more postings with folks who use AAC or type independently, im sorry but i seen too mjch proof that FC is nott he autistic but is the facilitator, plus its not a functional wayanyway takes too long, and with the adaptive AAC devices peoplecan use hed pointer, or eye gaze, mouse joystick, and much more toaccess it independently so there will be NO DOUBT tht, that person usign the device is there thughts and words and theres alone, and not even possibly somebodye elses

    • Well, I’d like to see that NT’s can communicate information other than Auti$m $peak$ talking points. So I guess neither of us is getting what we want.

    • Personally I’d like to see less people like Kim … and James Todd and their followers occupying the same universe as autistic people (or me). Their unending crusade to silence the voices of autistic people who already have limited or no language ability is as mystifying as it is sadistic. They claim to be debunking FC and RPM for the benefit of the parents of autistics so they don’t have any “false hopes” that their children are actually highly intelligent beings. What a tragedy it is for people to assume competence! Think of the destruction this causes! The ruined lives! And these creeps support their crusade with cherry-picked scientific studies yet completely ignore any scientific studies that conflicts with their “just gag ’em” agenda.

      Plus, they ignore the countless examples of videotaped evidence that FC is authentic. When Pascal rests his hand on Larry’s shoulder while he is clearly typing letter by letter, apparently what is actually happening is that Pascal’s fingers have burrowed through Larry’s shirt and skin, drilled into his cerebral cortex and wrist, and Pascal is manipulating him like a puppet. OR Pascal is an illusionist exceeding the abilities of David Copperfield. And somehow, either of those possibilities is more believable that the option that Larry uses Pascal’s stabilizing presence to remain focused and calm so that he can express his thoughts articulately.

      And every time I think of an autistic child whose future is being destroyed by their own parents because they have swallowed this bullshit hook, line and sinker, I want to…

      Silence them.

  22. Clearly, Richard, we are of one mind here :-). Ariane and Emma are a couple of lucky ladies 🙂

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