Category Archives: Autistic Role Models

Pathologizing Autism? Let’s Discuss.

People argue that we have to pathologize autism because if we do not, families and Autistic people cannot obtain much needed services.  People say that it is one of those unfortunate things, but given the confines of our system, it’s the way it works.  People say that those who argue against the medical model for autism are not considering those who are more profoundly affected by their autism, those who require 24 hour care and assistance, people whose bodies cannot and do not do what their brains tell them, so much so that they cannot live without daily support.

I would love feedback and links from those who are Autistic favoring a shift away from pathologizing language and your reasons why.  I am particularly interested in hearing from those who are themselves, or who discuss people who are, in need of round the clock care.  If you have written about this, or have read anything about this, please send links.

Things people say, that I’d like thoughts on –

The medical model has its place and is needed to get services.

If we do not pathologize how will the people who require assistance receive it?

Any and all arguments and specific reasons why pathologizing autism is harmful.  Are there any studies showing the direct links to pathology language and harm and abuse of the people who are being pathologized?

What are the psychological repercussions of pathologizing autism?  Personal experience would be great!  (If you prefer to keep this confidential, email me at emmashopeblog@gmail.com.)  I will only share content from those who comment here or who tell me in private that I may do so.

A fantastic blog I refer to often and have reread countless times, is Nick Walker’s blog – Neurocosmopolitan, so no one need send me links to Nick’s work.  But for those of you who are unfamiliar with him, please, please read.  His blog is fairly new and has half a dozen posts, so it’s possible to read everything he’s posted in an hour or so, depending on how quickly you read.  I highly recommend doing so. (It took me a bit longer than an hour because I made notes along the way, as well as went to all the links he provided.)

DSM5

Ido Kedar’s Blog and Emma’s Response

I’ve written about Ido and his book and blog, both entitled Ido in Autismland, before, ‘here‘, ‘here‘, and ‘here,’ but want to devote today’s post to Ido’s latest blog post because Emma and I read his post this morning and Emma added some of her own thoughts to what Ido wrote.

Ido begins by talking about having just finished up his junior year at a non special education high school.  (I originally wrote “regular,” but then amended that because I no longer know what any of these words even mean, much less how derogatory they sound.)  Ido then addresses parents and then professionals and finally ends the post with a few encouraging words to other Autistic non-speakers.

After Emma and I read his post, I asked Emma what she thought.  She wrote, “I thought it was decidedly helpful to read Ido’s writing.  He tells strong truths lived.  Teaching wasted talkers about life not run on word fuel.”

“Word fuel.”  Can we just take a moment to fully appreciate that?  “Teaching wasted talkers about life not run on word fuel.”  There’s more, so I will disregard my urge to just end this post with that.

I asked Emma if she had anything she wanted to add to the paragraph he addresses to parents.  Emma wrote, “Parents – you must address your fears and doubts first, and then have caring words of encouragement for all word thinkers.”

I then asked for her thoughts on the paragraph addressed to “professionals”.  Emma wrote, “Teaching tedium does nothing, but water down ideas.  Lethargy is the lesson learned.”

Lethargy is the lesson learned.

Ido ends his post with a few words directed to Autistics like him.  Emma then wrote, “Work today, knowing each day pleases the necessary work of tomorrow.  Having hope, and loving, believing parents will make work easier.”

"Talkers"

“Talkers”

A Documentary, Two Blogs and A YouTube Video

The following is a trailer for Spectrum:  A Documentary about Autism and Sensory Perception.  This is the documentary I cannot wait to see when it’s finished!  It features Nick Walker, Martial Artist, writer of the single best description I’ve ever read answering the question  “What is Autism?” and all around amazing guy and Judy Endow, a terrific writer, speaker, talented painter and sculptor and friend.  The third person featured is Tito Mukhopadhyay, eloquent poet, writer and son to the woman I am filled with gratitude for on a daily basis, Soma Mukhopadhyay, who taught me how to communicate with my daughter.

 

This is the first of two blogs you must know about, if you don’t already.  How to Talk to a Woman Whose Child is Dead the most recent post on Unstrange Mind.  It is so beautifully written by the multi-talented Sparrow Rose Jones, who also sells her fabulous art work in the form of t-shirts, stickers, hoodies.  Click this link Red Bubble to see and purchase Sparrow’s wonderful art work.

The second blog, We Are Like Your Child, is one I’ve been following since it was created.  It’s a group blog with a variety of people, mostly Autistic, who write about a wide range of topics.  A Checklist For Identifying Sources of Aggression is a great bullet point checklist everyone should read and Meltdown, Night Blooming Flowers: Sudden Skill Acquisition and Extreme Context Dependence,  Teaching Us to be Silent, and Please Don’t Rush Me are other examples of the kinds of posts you’ll find.

And finally I’m going to end by sharing again a video of the presentation Emma and I gave at CoNGO affiliated with the UN a month ago on World Autism Awareness Day, now captioned thanks to the beautiful and talented, Savannah Nicole Logsdon-Breakstone.  Thank you again Savannah!

 

How Do We Put A Price on Communication?

As I was downloading a couple of photographs just now, I found the video we took of Ari and Emma’s presentation Wednesday evening.  Intact.  We’ve got it all!!  Woot!  Woot!  But before I put the video on here, I have to get permission from Ari and Emma.  So let me do that and then, if both agree, you should be able to view it next week.  I’m hoping by Monday.

In the meantime, there’s something else I want to talk about.  And that is the experience of hearing your child’s thoughts and opinions, interests, questions, and desires, when you weren’t sure you would ever be able to do so.  Now this is a little loaded because there are some who believe it’s wrong to suggest all Autistic people will be able to express themselves.  Those people believe there are some who cannot and it is creating false hope to suggest otherwise.  There are still others who feel that communication comes in myriad forms and we must stop insisting one way (speech) is the only way. They believe we should honor all methods of communication, whether that’s through words, sounds, body language, or silence and using our other senses.   Those people believe, and I am one of them, that we all have the wish to connect with our fellow humans in some capacity, at least some of the time, and it is incumbent upon all of us to figure out how we can support each other so that all have the opportunity to do so.

When Emma first wrote an unexpected sentence, described in detail ‘here‘ it was the beginning of what would turn out to be nothing short of an odyssey for all of us.  From that moment, on November 25th, 2012, we have experienced what can only be described as a dream-like adventure with Emma leading the way.  The degree to which she was underestimated by almost everyone who met her, including us, is beyond my ability to describe.  I say “almost” because there were a few people who met her who were not fooled.  It is interesting to note that those few were Autistic.  My friend Ibby was the first and we’ve written a little about this in two pieces she and I wrote featured in Parenting Autistic Children With Love and Acceptance’s first addition of their terrific new magazine, which you can read ‘here‘ (It begins with a piece by Ibby on page 17 and then ends with my companion piece beginning on page 21.)  By the way, the entire magazine is filled with wonderful pieces by Beth Ryan, Nick Walker, Cynthia Kim, Amy Sequenzia, Renee Salas, Sharon davenport, Alyssa Hillary, Kimberly F. Steiner, Juniper Russo, Amy Caraballo, Jane Strauss, Kelly Green, Steve Summers, Leslie Rice, Zita Dube-Lockhart, Leah Kelley, Lei Wiley Mydske and others who donated their art work.

When someone sees Emma, who now communicates by pointing to letters on a letter board, (which is different from when she wrote that first sentence a year and a half ago) I sometimes hear the following comments – “I just don’t see how this can translate to a school setting” or “It takes too long” or  “economically it’s not feasible because it requires a one on one ratio that most schools won’t be able to pay for.”  Except here’s the thing…  The way Emma communicates is tailored for an academic setting.  Just as in any classroom, a student is called upon to give an answer or thought, about any given topic, so could Emma be given the opportunity.  All it requires is for the teacher to say, “Emma when you’re ready just signal and you’ll be next.”  The aide can then raise their hand when Emma has finished writing.  This would also deal with the comment that it “takes too long” and I’ll just add that our society’s increasing desire, that everything be reduced to a sound bite, should be tempered, and having someone like Emma in a classroom, would be beneficial to all, by the very fact that we all need to slow the f*ck down.

As far as what this means economically, I argue that there is a great deal of money being spent on a great many things that are NOT working.  Things like trainings for methods that do not produce the type of complex and nuanced language we are seeing.  How do we put a price on communication?  How can anyone suggest that having someone who was thought to be unable, or worse, incapable of expressing their thoughts, not be supported to do so because of the cost associated with it?  How can any of us seriously object?  And yet… people do all the time.  And it catches me by surprise every, single time when they do.

To see your child express their thoughts, as we have had the opportunity to do, is beyond anything I’ve ever experienced.  It has changed everything.  Literally everything.  Some people have said to me, “Oh you’re so patient.”  No.  I’m not.  When Emma is writing something, I am filled with eager anticipation for what she’ll say.  Patience?  No.  Ecstatic is a better way to describe my feelings as I witness the outpouring of her words.

How we engage with our daughter, how we speak to her, what we think and now believe, all of it has dramatically changed as a direct result of her communication.  I haven’t even begun to discuss what this has meant to Emma.  And here’s just one more massive difference between then and now.  Instead of me guessing or making assumptions about what this means to Emma, she can now tell us.

“I want to tell you that I am capable.  Daring massively, eager to prove my intelligence, I will work tirelessly so that Autistic children younger than me won’t be doubted the way I am.”                                         By Emma Zurcher-Long

How does anyone put a price tag on this?

Emma Wears A Pretty Dress To School ~ April 4th, 2014

Emma Wears A Pretty Dress To School ~ April 4th, 2014

Emma Presents At CoNGo With Ari Ne’eman

Tuesday night I received a message from Jess of the blog  – Diary of a Mom – telling me she wasn’t feeling great, was supposed to get on an airplane the next morning to come to New York City to give a presentation, along with Ari Ne’eman, co-founder of ASAN (Autistic Self Advocacy Network) at CoNGO (Conference of NGO’s) in consultative relationship with the UN.  She asked me if I’d be able to step in if she still felt awful Wednesday morning.  I told her, not to worry, “we’ve got this,” urged her to drink liquids and get lots of rest, but that I fully expected her to wake feeling much better and that none of this would be necessary.

Fade to the following day.

Jess texts me to say she’s feeling wretched, definitely has the flu, there’s no way she’s going anywhere and has contacted the person who invited her to speak to tell him she can’t make it, but that she’s asked me and is hoping he’s okay with this change in plans.  So we wait to hear from him and I go about my day, trying as best I can to not think about it.

Three hours before the event I was able to check my email and see that I’d been given the green light.  I had a few things I needed to do before I could even think about what I would say, but because of an earlier conversation I’d had with Erich who organized the event, I felt I had a pretty good idea.  Basically I intended to introduce Emma and begin by reading her A Letter to the World followed by Emma Discusses Awareness, a quote from something Emma wrote about Acceptance just a few hours before and ending with a question to Emma, “would you like to add anything?”  An hour before the event I was in a panic, while Emma was cheerfully singing and dancing to Donna Summers, wearing her pretty party dress which she chose specifically for the presentation.

We arrived and Ari gave a terrific speech about autism, acceptance, the reason calling a group of people “burdensome” and an “epidemic” is hurtful and problematic and then it was Emma’s turn.  After I read Emma’s words about “Awareness” I said, “I asked Emma earlier today what she thought about awareness versus acceptance.  Emma wrote, “I am aware of many things, and so are you.  Acceptance takes more dedication.”  I paused and then turned to Emma and said, “Do you have anything else you’d like to add?”  I held her stencil board and gave her a pencil.  Emma wrote, saying each letter as it was pointed to, “Yes.  Autism was not something parents wanted to hear, but I hope that will change when more people meet someone like me.”

Applause.

I intended to post the video of the whole thing here, but our camera had a different idea and when we returned home, excited to see the footage, nothing had been recorded.  And because we thought the whole thing was being recorded we didn’t bother taking any still shots either.  So other than a few photographs of Ari, we got nothing.  (Insert sad emoticon.)

Regardless, Ari and Emma rocked and I’m guessing at least a few people came away with a very different idea of what autism is and isn’t.  And if I’m right then it was worth every second.

PS  Jess, I’m hoping you’re feeling better.

Ari Ne'eman

Ari Ne’eman

 

 

 

Seeing Others Write To Communicate

I often think about that first time I saw someone who was unable to express themselves through spoken language, but who spoke through writing.  There is nothing quite like seeing to believe or at least to begin to believe what many of us have been told is impossible.   So I’ve compiled a few Youtube videos of different people who communicate the way Emma does.  A couple of them show people who have graduated from the laminated letter board and now type independently on a stationary keyboard.  This is our goal and what Emma is working toward.   For those who may feel someone holding a laminated letter board is cumbersome and suspect, please keep in mind the letter board is a stepping stone, which all hope will eventually lead to full independence.

The first video is of Ido who now types independently on a keyboard.  Ido’s blog is Ido in Autismland where, in a recent post, A Challenge to Autism Professionals, he wrote:

“The theories regarding autism have been based on observation of our odd behaviors. Lists of these behaviors make a diagnosis. I have limited independence in selfcare. I have limited eye contact. I have flat affect often. I can’t express my ideas verbally. I have poor fine motor control. I have impaired initiation. I have impaired gross motor control. I have difficulty controlling intense emotions. I have impulse control challenges and self stimulatory behavior.”

At the end of this terrific post he writes:

“Thousands of autistic people like me live life in isolation and loneliness, denied education, condemned to baby talk and high fives, and never able to express a thought. The price of assuming that nonverbal people with autism have impaired thinking is a high one to families and to people who live in solitary confinement within their own bodies. It is high time professionals rethought their theories.”

Ido wrote a book with the same title as his blog – Ido in Autismland.  I cannot recommend this book enough and have written about it before ‘here‘ and ‘here.’   It should be required reading for all parents with an Autistic child as well as anyone who is considering entering or is already in the field of special education and/or autism.

This second Youtube video is of a boy who writes a letter to his church.

Jackie Dorhurst is a speech/language pathologist shown here working with Gavin.  Jackie has an organization called RPM+ located in Wisconsin.

This next video is of my friend Sue Finnes’s son Chris.  Sue has a wealth of videos that she’s posted on Youtube over the years of Chris working with a number of people whom she’s trained to work with him.

And finally this video is of another independent typer, Mitch Helt who writes a letter to his aide.

This post was inspired by a comment from Ari,  who has a wonderful blog, Pixie Perceptions.  You are not alone Ari.  Doing all I can to make sure others realize this…

Some Thoughts on Stereotypes and Empathy

Stereotypes are more problematic than not and yet most people, even though they may be unconscious of this, behave according to what they’ve been told or have observed to be true, even though it may not be true.  So, for example, if we are told Autistic people lack empathy, we will unconsciously be on high alert for any example of this.  In doing so, we behave in accordance with the very stereotype we are critical of.  In other words our own empathy suffers.

In the case of war, where we are fighting an “enemy” this type of stereotyping is actively sought and pursued so that those who are on the front lines can justify their actions.  We are told the enemy are “radicals” or “terrorists” or “fundamentalists” or “extremists” or unduly aggressive, thus justifying our own aggression toward them, which is seen as “good” and “necessary”.  Often we are told the enemy is deceitful, even “evil” or “bad”.  Stereotyping is usually negative, but not always.  It is a way to claim pride and feel a sense of belonging to one group, while seeing the other group as different, lacking understanding and often threatening.

To take this a step further, the people, usually a group of people who are not the majority, such as those who are being grouped into the “lacking empathy” category, may also internalize this idea and be on the look out for instances where they “lack empathy.”  And yet, most of us can find examples of this if we look hard and long enough, times when we have behaved in ways that would be seen as “lacking empathy”.

Empathy is both a feeling and the ability to sense another person’s emotions as well as imagine what they might be thinking or feeling, coupled with the ability to communicate all of this.  If communication is even remotely an issue, expressing one’s empathy will be difficult.  If you are in a country where the spoken language is not one you understood or know, its culture one you are not familiar with, would you be able to adequately express the empathy you felt in a way that would be recognized and understood?   Is it possible you would be misunderstood and labeled as something that you are not, simply because the cultural norms did not come naturally to you or you had not learned them and could not express yourself in a way that the other group recognized?

Additionally being on the defensive, feeling constantly attacked and criticized might also erode your ability to express yourself.  Feeling anxiety, judged, and ill at ease might put you on high alert.  It’s really tough to feel for other people when you are in a state of almost constant attack.  This is counter intuitive to all human beings regardless of their neurology.  But saying that those who are under almost constant attack (and for those of you who will argue that this is hyperbole, please know I am not suggesting every single person whose neurology is Autistic is feeling attacked, rather I am pointing out that many are and have been saying so for quite some time now) lack empathy is an interesting twist, exonerating one’s own actions and part in all of this, while holding another to a higher set of standards.

While stereotypes may help one identify with a specific group, they are largely negative and encourage assumptions that, more often than not, exclude rather than include.   I keep hoping we are heading toward a more inclusive society, but so many of the current debates suggest otherwise…

Emma, Mark Utter and Ibby at the ICI Conference - July, 2013

Emma, Mark Utter and Ibby at the ICI Conference – July, 2013

This post was inspired by yesterday’s post over on  Diary of A Mom, that Jess alerted me to.

Related Links from others:

Empathy as a Form of Communication by Michael Forbes Wilcox
Not Guilty by BJForshaw
I am in here by Mark Utter
The Sound and Worry By Arianna
Inventing Empathy by M Kelter

A Radical Notion

As I fantasize about a world in which autism is not consider a “bad” thing, but instead is seen as yet another type of neurology with its pluses and minuses, I continue to rewrite the “ideal introduction to autism” with the hope that one day this may actually be a parent’s experience.  I can’t imagine what that would be like, but I know for a fact, it would be a hell of a lot better than the very real, very upsetting, confusing and painful introduction to autism that I was given almost ten years ago.

First off, the literature regarding autism…  more and more there are books and blogs (!) written by Autistic people introducing the idea of autism as another kind of neurology with both innate challenges and wonders.  I’ve listed many of them on the Resources page on this blog.  As there were no blogs (written by Autistic people) that I knew of in the fall of 2004 I went to Barnes & Noble and bought pretty much every single book written on Autism.  Some would say that was my first mistake, as I was greeted with nothing but gloom and doom.  Other than Donna Williams and Temple Grandin, all the books were written by non autistic people about the dire, horrors of autism and what that meant for your child. (And none of it was good.)  Autism was most definitely not something to celebrate.

The idea that autism could be seen as anything but terrible was not even a radical notion, it was a thought that hadn’t made it into the public sphere.  When Emma was diagnosed the big names associated with autism were Andrew Wakefield, Jenny McCarthy and Bernard Rimland.  It was impossible to read anything about autism without those three names coming up.  Parents new to all of this, fumbled around trying to make sense of the various thoughts about cause, was it really an epidemic and how to best serve our children who were said to have been snatched from our protective arms.  I’ve written about the depth of my fear during those first few months that turned quickly into years in numerous posts on this blog.

My fantasy is nothing short of radical, but perhaps one day it will not be seen as such, but instead, will be commonplace.  My fantasy introduction to autism begins with the evaluation.  At least one of the therapists who came to our home in September of 2004 would have been Autistic.  Once it was thought my daughter might occupy a place on the Autism spectrum, more Autistic therapists, social workers and psychologists would have come to conduct the evaluation and talk to us.  This, then, would have been our introduction to autism…  meeting actual Autistic people, who are able to articulate what the challenges are and what the joys are!  People who could offer a balanced view of a neurology that I would be able to identify with and see there was overlap with my own.  People who would gently encourage me to review my own neurology and see that my daughter’s experience and processing of the world, while different from mine, has many similarities.  People who could help me so that I was in a better position to be the mother my daughter needed me to be.

After the evaluation and diagnosis had been made, we would then be given support in finding at least a few Autistic people who were in the profession of working with families with Autistic children.  In my fantasy, Autistic people would be among those creating schools, designing curriculums, teaching academics, conducting seminars for us, the parents of Autistic children, to attend so that we might better help our kids.  It seems to me a radical shift in all aspects of autism, what is said about what it is to be Autistic and what is being told to those who are non autistic, needs to occur.  My dream team would include Autistic and non autistic alike, but it would be a blend of those who presume my child competent, who treat my child with respect, who are interested in my child’s well being and want to work towards her strengths, encouraging her to be all she can be and cheering her on.  photo

An Interview With Tracy Thresher of Wretches and Jabberers

Wretches and Jabberers, the not-to-be-missed documentary by Oscar Award winning and two-time Academy award-nominated filmmaker Gerardine Wurtzburg, follows two non-speaking Autistic men, Tracy Thresher and Larry Bissonnette as they travel the world, reaching out to other non-speaking Autistic people in an attempt to change public perceptions surrounding intelligence and autism.

I’ve written about the film ‘here‘, ‘here‘ and ‘here‘ and about meeting Tracy and Larry, ‘here‘, ‘here‘ and ‘here‘.  I cannot emphasize enough how mind altering this documentary is. It is imperative people begin to examine their own ideas about what intelligence is and what that means, particularly as parents of children who may be similar to Larry and Tracy, who appear profoundly disabled or have difficulties with verbal communication.  Tracy and Larry exemplify all that is thought to be “other” and yet, when they type, they are eloquent, often hilarious, articulate and philosophical, as well as insightful about society’s view of them.  After watching Wretches and Jabberers, one cannot help but conclude we are all more alike than not.  The divisions we perceive are shown as constructs of our own making.  The biases we have towards those with disabilities is something we all must actively change.

A few months ago Tracy Thresher generously agreed to answer a few of my questions.  What follows is our conversation, but as you read this, please think about questions you may have and leave them for me in the comments section or email me privately with them at:  emmashopeblog@gmail.com.  (Do tell me whether you prefer to remain anonymous as I will credit you with any questions I end up using, unless you prefer I do not.)  I intend to submit this interview, once it’s finished, to Huffington Post and hope it might inspire people to reconsider their assumptions.

AZ:  Tracy, how would you describe the documentary, Wretches and Jabberers?

TT:  Our film catapulted me to realize my dream of traveling the world to educate, learn and change old attitudes of discrimination toward people of varying abilities. The Larry and Tracy duo illustrates how intelligence is often worked out in a much different way. Our journey takes us to places of enlightenment and our humanity, humor and intelligence comes shining through our typing. Our mission to spread the reality of our amazing intelligence through our typing is our way of promoting the Presumption of Competence dispelling myths. Our story is one that is a road trip for two friends who are in Larry’s words “more like you than not”.

AZ:  “More like you than not” is such a wonderful description.  So much of the literature surrounding autism is about the “deficits” of Autistic neurology compared to non Autistic neurology. Can you talk about the assets and the similarities?

TT:  In my way of thinking, my experience initially was uncontrollable anger for the life I had trying to break through the misunderstanding in school. Kids can be brutally honest, reflecting the language that was the accepted norm in my childhood. Labeling kids is crippling. MR (mental retardation) on a diagnostic chart equates to NOT a candidate for the honor roll. Now I am able to communicate the reality of autism. I met Monk Hogen during the filming of “Wretches and Jabberers”, shining his wisdom on my autism. My true desire and purpose in life is breaking the walls of injustice down and my autism is the gift God gave me. I now focus on how I am connecting with all kinds of people through my work on the road. The high I feel in my own community is so wonderful, knowing that people want to know me. The man I am today is because my autism is the gift I was given to be a leader to anyone who has ever felt less than human based on their appearance. Martin Luther King knew that hurt and he took it to the mountain of peace. My mind is more like a Mensa candidate than I can type. My life is a testimony to the lesson of humanity. Like Larry typed “More like you than not” is the guiding principle to inclusion.

The anger on stage during my presentation in Japan was related to the lost opportunities in my education. I kept shouting out my automatics like “Look at me now! The kid you told one another to keep in isolation now is mentoring students which is healing salve to old wounds of injustice.” The other anger in Sri Lanka is more about the heat in the way it took my overly heated mix of perspiration soaking my clothing to extreme discomfort. Also, the popular foods in their culture are not in my comfort zone. Finland washed my anger, turning my heart to love of the climate. The cuisine helped too. Primarily, beautiful lands of countryside put my spirit at ease. Henna melted years of lost hope by crumbling away the feelings of isolating my heart to love.

People in the world often fear the paradox that autism usually presents. Larry and I mostly felt gracious vibes in our travels but the camera crew likely alters reality. To reflect on the cultural attitudes, the typing of my international friends is the true compass pointing to injustice.

AZ:  For children who may be trying to cope with similar frustrations and anger, what do you suggest to them and their parents, teachers and therapists?

TT:  This is my mission to show kids and their supports that putting communication to the top of their list of priorities is vitally cleansing to the mind. Releasing deep thoughts is the key to alleviating anxiety. Frustration leads the body to unproductive anger. Being able to show intelligent thought is the path to happier futures and true quality of life, leading to purpose. That is what I sought and found with typing.

AZ:  Was there anything others might have done to help you when you were overwhelmed with anger?

Harvey and I have trust in our partnership. I need his firm yet kind support to stay on course with managing my autism. Harvey and I work well together. Typing is my outlet and open communication is the key.  Long term shared goals helps to keep me on track. Harvey’s commitment to my communication is the big time dosing of calm energy that I need. The commitment to presuming competence is the major breeze of refreshing air to cooling anger.

AZ:  You communicate by typing, but need someone to support your typing.  Why is it necessary for you to have someone supporting you?

TT:  Impulse to type out my most irritating automatics like going to radio stations or wcax news gets looping in my mind. Having good facilitators is helping me to slow my typing to think and connect to my inner thoughts. I also need high goal of working on fading physical support to be more independent and type with lessening support. Building trust is critical to fading.

Tracy Thresher

“People Have to Listen”

Stop Hurting Kids is a campaign to “end restraint and seclusion abuse in schools.”  Restraint and Seclusion: Hear Our Stories is a 27 minute film by documentary filmmaker, Dan Habib.   Creator of Including Samuel and Who Cares About Kelsey?  Dan Habib is “Filmmaker in Residence at the Institute on Disability at the University of New Hampshire.”  The transcript of Restraint and Seclusion is available here.

For those of you who do not have the time or inclination to watch the film, here are a few quotes from it, which I hope will serve to pique your interest enough to watch the film in its entirety.  Because this is happening all around us, because this could be one of our children, because we, as a society, must become aware of what is going on, because without awareness and protest this will continue, because prejudice and brutality are not the answer, because as Barb Rentenbach continues to remind us, I might be you, because as my daughter, Emma has said on numerous occasions, “People have to listen.  Mommy, people do not listen to Emma.”

“The National Disability Rights Network reported that in recent years, the misuse of restraint and seclusion has resulted in hundreds of deaths and thousands of injuries.”

Peyton Goddard – “It was bruted power jired by purses wrongfully called teachers trying to beat I. This war wasted my rest. The sweet in I evaporated out.”

Helena – “He slammed me up against the wall, arm barred me across the throat and lifted up so I couldn’t breathe. And then whispered, “How am I supposed to talk to you nice and slow so you can understand?”

Wil Beaudoin – “One particular day we went to see my son and we were going to give him a haircut. So, we took off his shirt and he was covered with bruises and abrasions, fifteen to twenty on his body…everywhere.”

Peyton Goddard – “Fright opted I timid, silent and unable to fight back. Telling myself sweet lies that the tortures did not matter.”

Brianna – “I did not have a speech-generating device. Good evaluation would have made that happen. I tried to tell my mother. She did not understand me or she thought the teachers knew everything.” 

Peyton Goddard – “Try to see potent powerful potentials in each pierced person. There you will free their gifts. There I can feel I’m treasured. There nary I’m fret. I’m ready. Are you? Try please.”

Larry Bissonnette, Peyton Goddard and Tracy Thresher at TASH

TASH 6

 

Acknowledging Other’s Achievements

When I asked Emma if I could post this video of her doing her latest “catch”, she said, “Yes!  Post on blog!”

I’ve written about Emma perfecting her “catch” ‘here‘ and ‘here‘ and I’ve mentioned too, the hours of practice it took, for her to get to this point.  It’s important you understand how hard she’s worked.   She didn’t suddenly climb up a ladder, grab onto the trapeze, swing a few times and then catch someone else’s arms one day.  She has been practicing this for years.  Just as she didn’t suddenly begin typing sentences or one day open up a book and start reading it, Emma has worked hard, incredibly hard and for anyone to suggest otherwise is doing her and others who are accomplishing wonderful things a tremendous disservice.

Far too often we hear stories of children and people who, seemingly miraculously, began reading grade level material or began typing their thoughts or began playing an instrument and to us, the reader, the person who has just now discovered this story, this video, this whatever it is, it seems it all happened “suddenly”, “miraculously”,  “overnight”, yet this is rarely the case.   Years and years of practice, of hard, hard work have taken place before that moment when we become aware of the person.  How many times have we heard about someone being an “overnight sensation” with lots of exclamation marks following those two words.  How often do we hear of someone who has accomplished incredible things, we marvel at them, but we also dismiss their tremendous accomplishments with our belief that it all happened “miraculously”.

The years leading up to those success stories are not so interesting to most of us.  We don’t really want to know about the daily grind, day after day of showing up to perfect or master a skill.  When we apply these same beliefs to people with disabilities we are doing them a tremendous disservice.  Not only are we ignoring the difficult work, the hours and hours they put, in practicing and honing their skills, we are dismissing all that hard work with words like “magical” and “miraculous” and we are ignoring just how hard that work is.   There is nothing miraculous about someone accomplishing something after putting in hundreds and thousands of hours of practice and hard work for years.  Their accomplishment is not an indication of our failure.  We do not need to dismiss someone else’s achievements to make ourselves feel better.

All those people who have gone on to prove themselves as more capable than most people gave them credit for are NOT examples of miracles.  They got to where they are through HARD WORK.  To all of you,  Emma Z-L, Carly Fleischmann, Tito Mukhopadhyay, Jennifer Seybert, Jamie Burke, DJ Savarese, Barb Rentenbach, Amy Sequenzia,  Emma Studer, Paige Goddard, Amanda Baggs, Henry Frost, Larry Bissonnette, Tracy Thresher, Sue Rubin, Alberto Frugone, Richard Attfield, Nick Pentzell, Rob Cutler (there are too many people to list) to all of you who have worked so hard, who continue to work every single day to communicate and do all that you do, your hard work is acknowledged and appreciated.  I need you to know how much I appreciate the days, months, years, and for some of you, decades that each of you has spent showing up, day after day to do what does not come easily.

You are leading the way for my daughter.  You are showing me how it’s done; I cannot thank you enough.

Emma practices climbing the rope wall

Nic & Em

Emma’s Hope Book Celebrates 1000 Ausome Things #AutismPositivity2013

Today is 1,000 Ausome Things ~ The Autism Positivity 2013 Flashblog Event!!

For those of you who want the history of the Autism Positivity Flash blog in all it’s glory, this post from Outrunning the Storm is essential reading.

This flash blog event asks that we focus on “ausomeness” to counter all the negativity, fear, and very often, misinformation that surrounds autism, our Autistic children and Autistic people.  There is no way I can detail all the Ausome things about autism I’ve learned in the last year, let alone last nine years, since my daughter was first diagnosed.   So instead of using words, I am using images. Please enjoy this scrapbook, all taken in the last two months.

Larry Bissonnette (star of Documentary film – Wretches & Jabberers) taking Emma’s photograph

Larry takes Em's photograph

Emma types with support from Pascal Cheng.  Tracy Thresher (star of Wretches & Jabberers) and Harvey Lavoy sit to the left.

Harvey, Tracy, Pascal & Em @ USF

Emma with her friend Henry

E&H -Friends

Barb Rentenbach (author of the book, I might be you) – cheering Em on 

Barb Rentenbach

Emma laughing with Ibby (of Tiny Grace Notes)

Em and Ib

And this… just this… which if I could only send in one image, one snippet, it would be this – Emma soars and yes she and everyone else pictured above are the very definition of the word – AUSOME!

 

The Influence of Others

On March 1st, 2012 my life changed.  I had no idea it was about to change.  I had no idea a single blog post would impact my life the way it did.  I didn’t know when I clicked on the link a commenter sent me on this blog, taking me to someone else’s blog, that I was in for the ride of a lifetime.

I had no idea.

On March 1st, 2012 I read Julia Bascom‘s post ~ The Obsessive Joy of Autism.  A post she’d written almost a year before, but I was only now reading.  Her post begins with this, “I am autistic. I can talk; I talked to myself for a long time before I would talk to anyone else. My sensory system is a painful mess, my grasp on language isn’t always the best, and it takes me quite some time to process social situations. I cannot yet live on my own or manage college or relationships successfully.”

I had no idea.

I have read that post half a dozen times since I discovered it.  And then I read her post just preceding entitled Grabbers.  “The grabbers don’t believe that we can be happy or find meaning unless we are exactly like them…”

Read that again – “The grabbers don’t believe that we can be happy or find meaning unless we are exactly like them…”

As a parent I want nothing more than for both my children to find their way toward meaningful lives, lived with purpose.  That they will then also find happiness I thought was a given.  Or so I always believed.  Does that mean they must be like me?  Do I believe that their ability to feel happiness is reduced, lessened, not relevant, inadequate, inferior, if it looks different from my idea of what constitutes meaning and happiness?  Can I let go of my preconceived ideas pertaining to happiness and what that means for anyone but myself?  Do I even know what happiness is for me, let alone another?

I had no idea.

These were the questions that began to gnaw at me as I read Julia’s blog, Just Stimming.  I urge anyone who is not familiar with her blog to read it.  Just Stimming is beautifully written as well as powerful, poignant, evocative and for me anyway, gut wrenching.

Again, from her post Grabbers –  (**Words highlighted in bold are mine, as in Julia’s post those words are italicized.)

The hands are everywhere.

They’re at our chins. “Look at me,” with a face pressed in so close to yours that you count the pores until they force your gazes to meet.

…protesting just means you need to be grabbed more often, with harder and more insistent hands, until you realize that the way you move is fundamentally wrong, as wrong and deficient and disturbing and dangerous as you are, and if you want to be counted as a “you” at all you must let them grab you until you can stop your self.”

I had no idea and now I realize that claim begins to ring false, even to my ears.  How was it possible to not have considered this?  But no.

I had no idea.

“…Until you realize that the way you move is fundamentally wrong…”

The post ends with, “In the end it just comes down to you are wrong, and for that you must be punished. It simplifies to your body is not your own, but it is mine.

I am about four years old, we are living in the first house I ever lived in.  Our baby sitter, Mrs. Williams stands guard outside the bathroom where I have been told I will stay until I have had a “bowel movement.”  I am sure she will not let me leave, but I cannot go to the bathroom on command.  I feel anxiety course through my body, it is as though my entire being is encased in a net, I can breathe, but I am trapped.  I sit staring straight ahead, wondering how long before she begins to yell at me.  I am terrified of Mrs. Williams.  She smells of antiseptic soap and wears a nurses uniform that crackles when she moves and those awful white shoes you see in hospitals that sound like she’s stepped in chewing gum when she walks.  Her skin is pasty white and hangs from her body as though it were half a size too big.   But mostly it is her eyes, partially hidden by glasses lens that  do not conceal her anger and resentment.  Those eyes hurt to look at because I see so much that isn’t said.

Finally I stand, tip toe to the sink, grab my drinking cup and fill it with toilet water then pour the water back into the toilet and flush.  I place the cup carefully back on the edge of the sink and wait for Mrs. Williams to open the door, allowing me to escape.

Your body is not your own, but it is mine...”

Julia’s blog was the beginning.  It showed me a different path and urged me to follow it.  I did.  Along the way I have found countless other blogs and have even been fortunate enough to meet many of the authors of those blogs.  Because of Julia’s blog I met my mentor and friend Ibby.  Because of Julia’s blog I read E.’s blog The Third Glance, which I intend to write about in the near future.  Because of Julia I have become a  (I hope) better parent.  Because of Julia I see the world differently.  Julia’s writing opened my eyes.  I wonder if any of us can ever really know how deeply our words can impact another.  I don’t know that anything I write here can convey what this woman has done for me or how enormously she has influenced me and because of her influence the difference she has made to my thinking and life and by extension, my daughter’s life.

Julia lit the way.

Julia created The Loud Hands Project.

Julia, with ASAN (Autistic Self Advocacy Network) put together the must read anthology, Loud Hands:  Autistic People Speaking.  

Julia is also the editor of the just released And Straight on Till Morning Essays on Autism Acceptance.  I just downloaded this book from Amazon for $2.99 and encourage everyone to do the same!

Julia’s writing gave me insight.  She confronted me with her truth.  She makes me think and rethink what I believe, what I think I know and she has made me question everything.  This post doesn’t do her justice.  How could it?

To Julia ~ Thank you  

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.

What Does Autism and The Hubble Space Craft Have in Common?

Most of you have probably read Jim Sinclair’s famous essay Don’t Mourn For Us.  If you haven’t, do.  In the Loud Hands:  Autistic People, Speaking Anthology a version of that essay comes after Julia Bascom’s wonderful Foreword.  By the way, if you didn’t see the Huffington Post interview I did with Julia regarding the anthology and future projects, you can read that by clicking ‘here‘ and I’ve also embedded a link so those of you who haven’t read the Anthology can buy it and read, because..  well this book needs to be read by every person on this earth AND it’s now available in paperback as well as on Kindle, so who can resist?  Here’s the “link” (again) to buy it.  Full disclosure – I bought this book for a number of my family members and gave it as a Christmas gift!

I read the anthology as a PDF file first, then I read it again in paperback and now I’m rereading it with my highlighter in hand.  There is not a single essay that has not been streaked with neon green highlighter.  The anthology has contributions from a wide range of people (a few of my favorite writers are missing, but I am hoping this anthology will be followed with a second that will include writing from E. of The Third Glance (not to be confused with “E.” who is in the current anthology), Aspie Kid, Michael Scott Monje Jr and Sparrow Rose Jones to name just a few.)  It’s not the type of book you can really quote from as each piece needs to be read in its entirety to get the full weight and power of it.

Having said that, I have to quote Jim Sinclair and hope that all of you will get the book and read it from cover to cover.  Jim wrote, “The ways we relate are different.  Push for the things your expectations tell you are normal, and you’ll find frustration, disappointment, resentment, maybe even rage and hatred.  Approach respectfully, without preconceptions, and with openness to learning new things, and you’ll find a world you could never have imagined.”  “… you’ll find a world you could never have imagined.”  This has been my experience, exactly.  I think I’ve even said something close to this before.  I believe I’ve said finding Autistic voices and reading their words was like being presented with proof that another universe exists, but that I never knew about.  So for all of you who need or want proof that another universe, a more wondrous and fantastic universe than is imaginable, read the Anthology and be prepared to have your world changed in the best possible way!

One of Emma’s favorite Imax movies is about the Hubble Space Craft found to have a faulty lens and requires repair.  Once fixed, it produces absolutely hallucinogenic images of the universe that are so beautiful it is hard to believe they are real.  To me, autism is like those images, beyond anything I could have imagined.

Images taken from Hubble Space Craft 

HubbleSpaceTelescope_N90

6a01053624b365970c0120a5b6a7b5970b-800wi