Category Archives: Autism

Transitions

Posted on July 18, 2013 by | 14 comments

We returned home last night from the ICI Conference (Institute on Communication and Inclusion) at Syracuse University and though it was wonderful to see those family members we’d left behind, being “back” is hard.  I don’t do transitions well. As a kid I would eagerly anticipate having a sleepover at a friend’s house weeks in advance, only to return home depressed.  It is still like that.  It often takes several days before the weight of sadness, that accompanies returning from a place where I’ve had a terrific time, is lifted.  Even though all that excitement, fun and the constant interaction with lots of people is exhausting.  Yesterday I was so emotional I knew I was in overwhelm, but we had a whole day of presentations ahead of us, so I ploughed through.

When I reach this point of exhaustion and overwhelm I become emotional.  Anything can set off a torrent of tears.  If someone says something even remotely critical the tears begin to flow, watching a movie, saying good-bye, tears and more tears; it’s as though the social dam I’ve constructed gets chipped away until there are too many cracks to hold the feelings back.  Everything becomes intense, my friends become a lifeline, it’s no longer just nice to see them, I feel dependent upon them, as if without them, I may die, words spoken with anything other than kindness, feel like knives, music induces feelings of pain and euphoria all at the same time.  I am hyper aware of and easily overloaded with the feelings and interactions and the sheer numbers of people.  This is how I’ve always been.  I understand this about myself.  I am able to function, barely, but not without lots of tears.  So much so that Ibby handed me her plaid handkerchief at one point, causing me to cry even louder and harder and then came over and hugged me as I sobbed on her shoulder.

I become hyper aware of the injustices of the world, I feel both ecstatic to be among so many wonderfully accepting people, while also horrified by the “real” world we live in and must soon return to.  The disconnect starts to feel impossible.  I begin to believe the change so many are trying to create will never come about.  I slide helplessly into despair.  And then I bolster myself up by remembering other people’s words.  At yesterday’s keynote address with Jamie Burke, Sue Rubin, Tracy Thresher and Larry Bissonnette, Tracy typed,  “Larry likes typing out poking fingers on hurtful labeling to push his wrecking ball toward brick walls of structures of old thinking.  What I intend is to push my own ball of fiery passion of change to the global stage and shatter the glass like Pascal did in the city.  Pascal clumsily broke the water glass; Tracy intends to go about the Inclusion Movement more like George Clooney.  Charming Tracy’s plan; worldly connections repairing injustices is the wretches-in-arms plan.”

I have the choice to join all those who are using their “own ball of fiery passion”.  It feels less like a choice and more like an honor.   We can join each other.  Linking our arms, united in making society understand that to include is in everyone’s best interests and all will benefit.

I am ending with photographs from the last three days spent immersed in a world that accepted, appreciated and above all else, presumed one another competent…

Ibby
Ib

Christine Ashby
Christy

Rosemary Crossley
Rosie

Em types with Leah
Leah& Em

Me, Amy & Ibby after our presentation, “Blogging to Communicate”
Ariane, Amy & Ib

Em takes the stage
*Em

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Ibby & Larry Bissonnette
Ib&Larrry

Douglas Biklen and Me
Doug &Me

Doug Biklen and Ibby
Ib& doug

Doug Biklen & Amy Sequenzia
Doug&Amy

Mark Utter during the Q & A after the screening of his film, I am in here
Mark Utter

Anne Donnellan
Anne Donnallan

Typing with Emma
Me & Em

Sue Rubin
Sue Rubin

Tracy Thresher
Leading Man Tracy

Emma’s String
Em's String

Em, Mark Utter & Ibby
Em, Mark & Ib

 

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Posted in Autism, ICI Conference, inclusion

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The ICI Conference – Day 2

Posted on July 17, 2013 by | 8 comments

Anne DonnallanDr. Anne Donnellan, Professor in the School of Leadership and Education Sciences at the University of San Diego gave the keynote address yesterday morning.  She said,  “I’m very happy to say, when it’s true – I don’t know.”  This sentence should be framed and placed inside of every doctor’s, educator’s and professional’s office.  In fact, this should be in every human being’s home, office, place of work, car… well, you get the idea.  Anne went on to say, “If you don’t know the answer, if you’re not sure, what are you going to say?”  She waited for those in the audience who speak to shout, “I don’t know!”  I have pages of notes from Anne’s speech which centered on how autism is mischaracterized as a communication, behavioral and social deficit, yet the massive sensory-movement issues that most Autistics experience is completely ignored.  Early in her presentation she said, “We didn’t notice people with autism have bodies.”  And a little later she said, “We tend to invent knowledge.”  I will be reading Anne’s book, Autism: Sensory-Movement Differences and Diversity by Martha R. Leary and Anne M. Donnellan.

The bulk of the day was spent supporting Em in her typing.   (I dreamt last night Em had taken over Emma’s Hope Book Face Book page!) Our session with Rosemary Crossley was terrific, with a young woman who is aiding Rosie, and all of twenty years old, came over and expertly supported Em in her typing.  Em proceeded to inform us that “math is not my favorite subject in school” and “The subject I like is english.”  Which… yeah…  because excuse, me young lady, but there’s this blog with YOUR name on it, all set to go!  Trying hard to contain my excitement.  Em then typed, “I am very creative.”  And in answer to my question about whether she’d like to maybe write something for the blog at some point, she typed, “I would like that.”  Yet as I write this, I paused just now and asked her if she’d like to write  something now, to which she gave me a resounding “NO!”  But she did say that she didn’t mind if I quoted her in the sentences above.  This is a work in progress for both of us!

Emily and Mark UtterAfter lunch Em and I watched a wonderful documentary by Mark Utter called, “I am in here.”  Before the movie began Mark typed, “i am totally happy you all are moving with me down this fine river.”  Mark is wonderful, and I have to say, he is one of my new favorite friends, even though we have exchanged few words.  I intend to devote a post to his creative and moving movie about what daily life is like for him and how he would respond to people were he able to talk.  Mark is one of a number of people we have met that I hope to stay in touch with.

PascalLater Em and I met with another family who also live in New York City hoping to have a conversation between Em and a non-speaking teen.  Pascal agreed to help facilitate, but as it turned out, I was able to work with Em pretty well with only a few pointers from Pascal.  It was a great day, though it’s really hard work for Em.  Later she typed with Pascal, “Much of my work with people is patterns and things like spelling is like that…”  And then she added, “And I love to work with Pascal.”
This photograph of Pascal was taken by Emma.

I must end this post now, but not before saying, these conferences are profound.  They are profound because of how they are completely unlike the world we live in.  They include, embrace and celebrate difference.  Every person is treated with respect.  People are allowed to be, without judgment.  It is bittersweet to be here, because this afternoon we will have to leave and return to the world that is not even remotely like this tiny piece, of what can only be described as, paradise.

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Live From The ICI Conference In Syracuse!

Posted on July 16, 2013 by | 14 comments

IbYesterday began with Ibby, as any proper day should.  Ib, assistant professor, blogger, activist, advocate and all around amazing human being, gave the keynote opening day address at the Institute on Communication and Inclusion here in Syracuse.  The room was packed.  Everywhere you looked people milled about from all over the country, ranging in age from under ten years to over seventy.  Some sat in wheelchairs, others moved their bodies back and forth, from side to side, some quickly in staccato gestures, others more slowly and rhythmically. Verbal utterances were not cause for stares or frowns, this was not a “quiet room” but a room filled with the sound of human beings in all their vibrant diversity, being themselves without censorship, without admonishment.  You can’t go to a conference like this and not get swept up in the beauty of unedited human beings being.

Ib & SteveJust prior to Ibby’s address I met the wonderfully talented, Stephen Kuusisto of the blog Planet of the Blind. Steve is a poet, author, professor, disability advocate and Fulbright Scholar.  Douglas Biklen, Dean of the School of Education at Syracuse University introduced us. This is Doug’s final conference as acting Dean and so I am particularly grateful to be here before he leaves.

This photo of Ibby and Steve Kuusisto was taken during Amy Sequenzia, Ibby and my presentation, “Blogging to Communicate.”

RosieAfter the keynote, we went to our “Hands-On Skill Building Workshop” with Rosemary Crossley.  Rosie is the one who developed facilitated typing more than 30 years ago in Australia, so I was very eager to meet her, finally.  Rosie went around the room and asked people to introduce themselves.  When she came to Emma, Em sat up and said loudly, “I don’t want to type!  My name is Emma.” To which Rosie said, “Oh! Hello Emma, how old are you?”  Em responded with, “I’m nine.” (Em is actually eleven, but tells people she’s nine, when asked.)  “Have you ever been to Australia?” Rosie asked.  “Yes!” Em answered. This time, however Rosie had a small machine that she held with a “yes” and “no” button on it and a laminated square with the words “yes” and “no”.  “Have you been to Australia?” she asked again.  This time Em, without hesitation pressed the “no” button.  A little later Rosie came and sat next to Emma and asked, “What’s your favorite color?”  While supporting Emma’s elbow, lightly with one hand, Em typed, “Pink.  What’s yours?” Then Em astonished me by continuing to type, “I hate yellow.”  Hate?  Seriously?  I hate yellow too, but really, I had no idea my daughter hated anything, much less a color!  Presume competence.  I’m going to reread that post I wrote…

RalphLater in the day Ralph Savarese and Steve Kuusisto presented on “Autism, the Brain and Poetic Creativity”  where they led participants in a poetry writing workshop.  After which Emma typed to Pascal, “really am telling my sameness self that its good to find different ways to that things and watching Ralph is fun.”  So there you go, Ralph.  A solid endorsement from Em.

Amy Sequenzia gave a personal and moving presentation about blogging and why she blogs, followed by me and then Ib who also spoke about why blogging is such a terrific platform, not least of all because it is interactive and immediate.  Ib then opened our presentation up for questions and comments and then…

Ib, Amy & Ariane

well, and then Em indicated that she’d like to say a few words, so Ib introduced her and Em took over, beginning with – “Ladies and Gentleman…” and ending with a list of all the various doctors, therapists, and people we once took her to see, followed by a list of all the people who now help us.  “Now we have Pascal and Harvey and Ibby and Ibbia (because Ibby has been given her own country, apparently) and Soma…”   Take it away Em!

It's the Em show

*I have to interrupt this post as I have to get to Anne Donnellan’s keynote starting in 30 minutes.  Peyton and Dianne Goddard sent me a copy of Anne’s book two weeks ago and I’ve been carrying it with me ever since.  So when I ran into Anne yesterday I pulled it out and showed it to her.  She is lovely and I cannot wait to hear her.  More to come!

One last photo though before I leave you…

Me with Amy and Ib – you guys rock!

Me, Amy & Ib

 

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Being the Adult I Want my Children to Become

Posted on July 12, 2013 by | 20 comments

“Are you the adult you want your child to grow up to be?” ~ Brené Brown from her book Daring Greatly.

Are we being honest here?

Because if we’re being honest, then – no, no I’m not.

I could hit the publish button right now and call this a post, but I’ve got a couple of things to add here.

From Daring Greatly – “…we should strive to raise children who:

  • Engage with the world from a place of worthiness
  • Embrace their vulnerabilities and imperfections
  • Feel a deep sense of love and compassion for themselves and others
  • Value hard work, perseverance, and respect
  • Carry a sense of authenticity and belonging with them, rather than searching for it in external places
  • Have the courage to be imperfect, vulnerable, and creative
  • Don’t fear feeling ashamed or unlovable if they are different or if they are struggling
  • Move through our rapidly changing world with courage and a resilient spirit

Now read every one of these things as a directive for yourself, like this:  Embrace your vulnerabilities and imperfections.  Feel a deep sense of love and compassion for yourself and others.  Carry a sense of authenticity and belonging with you, rather than searching for it in external places.  Don’t fear feeling ashamed or unlovable if you are different or if you are struggling.

I am becoming increasingly aware of how often my critical responses to my children are often reflections of my deepest insecurities. I don’t want them to make the same mistakes I’ve made.  I think I can control their future by making sure they understand just how serious all of this is.  I admonish my son for forgetting to feed the cat, while remembering the time my parents left me in charge when I was fifteen, two years older than my son is now, and how I forgot to feed the horses and had nightmares for years afterward.  I try to remember to phrase my sentences as – You forgot to feed the cat, what might help you remember?  Instead of my knee jerk response of “Did you forget to feed the cat again?  Why can’t you ever remember to do that?”  Because, wow, there’s a world of difference between the two…  and yes, I’ve said both.  The first is when I’m being the adult I want my children to grow up to be and the second is the adult I hope beyond measure they never become.

I worry about what a neighbor is thinking when he asks how we are and my daughter responds with, “Yeah, baby Teddy can’t go on the pogo stick.  Baby Teddy might fall and hurt his head.  Baby Teddy will cry and have to go to hospital…” and then describes how the doctors are going to have to put a breathing mask on baby Teddy.  I stand there feeling increasingly uncomfortable, because I care what our friendly neighbor thinks or because I’m afraid of what this might say about me and the things we put her through years ago?  And even as I am writing this, I marvel at how she really was answering his question, far more honestly than I ever would dare.

The truth is my children are closer to the adult I’d like to be, but am not yet.  I figure since my husband is hard at work figuring out the whole anti-aging thing, I’ve got at least as many decades ahead of me as I’ve got behind me to work on this goal.  I’m grateful for that, really.  I’m going to need every year I’ve got left.

“Have the courage to be imperfect, vulnerable, and creative”

Yup, check.

“Move through our rapidly changing world with courage and a resilient spirit”

Yup, check.   I got this.

Reflections in a puddle

Reflections in a puddle

 

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Posted in Autism, Parenting, shame

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Beauty in Being

Posted on July 11, 2013 by | 26 comments

A couple of years after my daughter was diagnosed with autism, a well-meaning acquaintance said to me, “God must think you very strong.”  It was one of those comments you wish the person hadn’t said.  I understood they meant well, I understood it was some sort of convoluted compliment, I understood they meant to be something like supportive, but it felt awful.  Least of all because I have never gained any solace from the existence or non-existence of the G-word, but mostly because of its obvious prejudice to those who are Autistic.  The person then followed that sentence with this next one, which was like a second jab to the solar plexus.  “I could never handle an Autistic child.”  I stood there in stunned silence.

At the time I think I probably looked away and tried to untangle the multitude of feelings that surged through me.  But today, now years later, I have a couple of things I want to say.  Let me tell you about my beautiful, perfectly wonderful, very human, child.  She is like the sunlight that glimmers off the leaves of an Aspen tree.  She is that first ripple that appears on a crystal clear lake, extending outward in ever-widening arcs.  She is the sound of rain on fallen autumn leaves, she is the smell of sage brush after an electrical storm, she is the glimmer of morning sunlight when it first appears rising up over snow capped mountains, she is imperfectly perfect and a gift and yes, a blessing.  And if I’m going to be completely, utterly selfish, I must say this:  she has taught me more in her short eleven years of existence than any book, spiritual leader, graduate class, academic study or person I’ve ever read, listened to or met.

I know Emma’s life will have challenges because of her specific neurology.  I know she will often have to fight harder, prove herself more often, work more doggedly and persistently than her non Autistic peers to accomplish things that many do not even consider accomplishments, but assume are a given.  Yet there are some things she can do and will learn to do that will be easier for her than many of her non Autistic peers.  I no longer see autism as a road block, but more as a different road all together.

Every morning I wake up filled with gratitude for my family.   But it is my daughter, my beautiful, beautiful daughter who has introduced me to a world I never knew existed.  A world that is beyond anything I could have imagined, a world filled with other Autistic people who enhance my life and the world on a daily basis because of their existence.  Emma has taught me the true meaning of gratitude.  She impacts my life in ways I will never be able to fully describe or express.  Gifts are like that.  Strength has nothing to do with receiving gifts.  It does not require strength to see the good in others.  It does not require anything actually.

That is another lesson my daughter has taught me –  the beauty in being.

Em testing out her new pogo stick.  Her record?  62 bounces.  

*Blue Pogo Stick

Related articles
  • Reflection (whereartandlifemeet.com – Ariane’s other blog)

 

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We Are Like Your Child: The Blog

Posted on July 10, 2013 by | 27 comments

*To Emma’s Hope Book followers – This post was password protected so that those I quoted could read it first and give their approval before I published.  They have and now it is here for everyone to read!

We Are Like Your Child is a new blog created by a group of people, all of whom have been instrumental in helping me understand autism and what it means to be Autistic.  These are the people I think of as my mentors.  They have helped me more than I can describe.  They are a diverse group in every way, but one.   They all have lived their lives with the same neurology as my daughter.  They are Autistic.  These are the people I often reference when I talk about how our lives changed.  It is their voices, their lives, their stories that have changed mine.  To say I’m excited to introduce their collective blog to all of you, doesn’t really sum up what I’m feeling!  I am grateful.  I am incredibly grateful.

This is exactly the sort of blog I would have devoured, had it existed in 2004 the year Emma was diagnosed.  The year when everything was so terrifying.  The year I began, unsuccessfully, to look for adults who might give me insights into my child’s mind.  We Are Like Your Child is created by those adults.  I will be following eagerly and closely.  Posts so far have included such topics as time agnosia, how one person dealt with having meltdowns as a child, routines and what happens when they are disrupted, and life skills.

A number of the blog’s creators agreed to answer a few of my questions.  (Thank you everyone!)  What follows is a group interview representing the many voices and points of view of its creators.

What is “We Are Like Your Child”?

“We Are Like Your Child is a collective, community blog by disabled, mostly neurodivergent folks.  The name comes from the whole declaration of “You aren’t like my child!  You can X, Y, and Z!” that we hear all too often.  The thing is, my way of doing Z, Y, and X is vastly different from how most people do, because I have a profound inability to do Q, G, and -7 but am absolutely rockin at P, F, and pi or whatever.  So this is kind of a place to write about our self accommodating mechanisms, the workarounds we use to function in a world not even a little built for us.  It’s a collection of coping strategies.  It’s our difficulties.  It’s our strengths.  It’s a collection of awesome people talking about our unique problem solving. ”

“We are more like your children than you know… and while we are all different, we are a roadmap of sorts, a set of guideposts pointing to the many potential directions your child may end up journeying to in the course of their life.”

“There are difficulties and sometimes they are very difficult. I actually do talk about them on tinygracenotes fairly often but since it is in the context of relating to what someone else is asking, perhaps that does not stand out the way it needs to. In this blog, we want to have our stories show that things are sometimes difficult and sometimes very difficult, and yet we live lives.” ~ From the post Lost, Mistimed and Melty.

Why did all of you create this blog?

“The most common stories in the media about disability tend to be inspiration porn or people who have a disability but have never had any problems ever (a subset of inspiration porn) or are the tragedy, doom, gloom narrative.  We are presenting a bit more reality than that.  Reality is sticky and messy and complicated and beautiful and difficult and sparkly all at once.”

“We love your child.  What?  You say we do not know your child?  No, maybe not.  But your child is a member of our tribe, our neuro-tribe, our extended family of those who share similar types of brains and similar ways of being in this world and so we do love your child and we want to try to help the Hard Knocks in their School of Life fall a little softer than they did on us.”

” The number one most important thing to guide you in your journey of parenting an Autistic child is your child.  Listen to your child – really listen.  The number two most important piece of your map in the huge love you have for your child.  Feel that love, feed that love, let that love guide you toward doing the best for your child.  We want to be the third big resource for you.  We are the grown-ups who used to be your child.  We want to help your child.  We want to help you.  We created this place as a bridge between our world and yours where we can meet and conspire.  Our collective job is to make the world a better place for Autistics and , specifically, for the Autistics you know and love.  Let’s work together to make that a reality for all of us.”

Yay!  Who among us doesn’t want to work together to make this world a better place?  I do!  I do!  *Jumps up and down.

Ahem.  My next question:  Who do you want to reach?

“I’m hoping to reach other disabled folks, really.  But I am also hoping to provide a resource for people who know and love disabled kids.  If we’ve tried 8,000 things, none of which are “well don’t be autistic then” and had some success, then maybe that’ll mean some kid doesn’t have to reinvent the wheel.”

“We want to reach other adults who are looking for ways to be in this world that suit their needs better.  We have advice from our own experience.

“We want to reach those who love autistic adults and want to help make their lives better.  We can tell you what kind of help we appreciate and explain why help that is not very helpful is… not very helpful.

“We want to reach parents of Autistic children.  Your child’s diagnosis was not the end of the world!  It was the beginning of a new and beautiful life as a member of our tribe.  Your child is not a tragedy!  Your child is beautiful and we want to rejoice with you in the diagnosis that will help your child get their needs met in ways you never dreamed possible.

“We want to reach anyone who wants to know that the lived experience of autism can be difficult, yes, but can be indescribably beautiful as well. We want to reach anyone who is open to learning about Autistic people and how to accept us, how to live co-operatively with us, or even how to be a happier Autistic yourself.”

The guidelines for submissions can be found ‘here‘, but in addition to what a couple of the creators had to say, I just had to quote from their blog:  “So you think you want to submit to We Are Like Your Child? Great! We want to hear from a large number of people, about how you manage to exist in a world that isn’t made for you, and yet like yourself anyway.”

Who can submit?

“We do not take submissions from not disabled people.  Well, I mean, they can send them, the system won’t explode, but we only print submissions from disabled people.”

“We also don’t print submissions that amount to “I just decided to act normal yay me” or “woe unto me life is terrible bc disability.”  Those markets are pretty saturated.”

Do you encourage people to ask questions?

“Yes!  Please ask questions!  We have a facebook page and we also are all reading comments on the blog itself.”

A wonderful new blog has been born.  Let’s welcome it into the world!

The Blog:  We Are Like Your Child

The Facebook Page:  We Are Like Your Child

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Protected: “We Are Like Your Child”

Posted on July 9, 2013 by | Enter your password to view comments.

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Progress

Posted on July 9, 2013 by | 22 comments

It’s a little ironic that this blog began as a document of my daughter’s “progress” (which, at the time I defined as – becoming indistinguishable from her non autistic peers) and has evolved into a document of my progress and movement away from exactly that kind of thinking.  I don’t really have a problem admitting the mistakes I’ve made, which is probably a very good thing as I am not going to get to a point where I never make any.  But I do my best to learn from them.  I try hard not to beat myself up.  Sometimes I’m more successful at that than other times, but that too is a lesson I learn from.  I didn’t get to any of this on my own.  The progress I’ve made regarding autism, how I think about my daughter and because of that thinking, how I interact with her, is a result of the help I’ve been given.  Help given to me by those who are Autistic.

I would be dishonest if I didn’t admit to times I’ve felt confused, afraid, unsure of myself, and incredibly vulnerable more often than I’d like, but that’s progress too.  There was a time in my twenties and early thirties when I did pretty much anything not to admit I ever needed help, let alone asked for it.  Thankfully I’ve progressed.  So last night when Richard told me about running into one of Emma’s early intervention therapists and how it seemed she was surprised that Emma was not able to carry on a conversation with her, I felt a wave of something I couldn’t immediately identify.  First I cycled through thoughts of “I don’t want to hear your feelings on this,” to “I wish you hadn’t told me about this” to the overwhelming urge to stick my fingers in my ears and yell, “LALALALALALALALA I CAN’T HEAR YOU LALALALALALALALA!!!”

Yeah.  I know.  That would have been childish of me.  And by the way, I’m 52 years old.  You have no idea how much I wanted to do that.  *Shrugs, then smiles. 

Progress…

So after all that, after we got into a fight about something unrelated that I can no longer even remember what the topic was, I realized what I was feeling.  I felt the weight and force of my feelings.  Feelings I really prefer not to have or feel.  Ever.  Shame.  Feelings of shame.  Yup.  Shame.  Like a massive metal door closing in on me, I felt shame.  And then I felt shame for feeling shame.  Fade to black.

Because that’s how this works right?  We feel something and then instead of being able to sit with the feeling, work through it, we add to it by feeling shame for feeling the initial feeling of shame.  Who came up with this stuff?  If it wasn’t so damn painful it would be beautiful in its perfection!  As a friend of mine and I like to say, it’s a “pick your poison” situation.  Whichever way you go, it’s going to hurt.  So yeah, I chose to feel the initial shame and tried hard to be aware of my judgment and that really loud, obnoxious, critical voice that loves to shout at me given the slightest opportunity.  “Shame.  Feeling shame.  Lots of shame,” I said.  Meanwhile Richard had moved on to the New York Times Crossword puzzle and looked at me with confusion.

To be clear – This isn’t about my kid.  This has nothing to do with her, who she is, her neurology, what she did or didn’t say.  This has nothing to do with Richard running into one of her Early Intervention therapists or perceived expectations, either mine, his or the therapist’s.  This isn’t about autism.  This isn’t even about parenting.  This is about perfectionism.  This is about my shame for being an imperfect human being.  That’s what this is about.

Progress…

Reflection

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Posted in Autism, Parenting, Perfectionism

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Early Intervention

Posted on July 8, 2013 by | 32 comments

Last week I wrote a post,  Autism “Experts” about how I used to attribute any action or sentence uttered by my daughter as evidence that whatever therapy or treatment we were employing at the time was “working.”  It was my way of staving off the persistent fear that if we were not intimately involved in a constant barrage of therapies, she would make no progress or whatever progress she made would be less, than if we devoted every waking hour to constant involvement and interaction.  Suddenly every waking moment became a moment we must engage, interact, teach and push for more.

We were told about the human brain and the small window when the brain’s plasticity is at its most optimal for learning.  From the moment that diagnosis was handed to us, we felt we were in a race against time.  Any time we sat down to read the newspaper or took ten minutes in our daughter’s presence to relax and just be in each other’s company without “working” with her was reason for guilt and the feeling that time was slipping away from us.  The nagging worry, if only we did more than we already were, she would be better served, is one I remember well and can still feel the residual stress of.

I want to clarify a couple of things that perhaps were not entirely clear in last week’s post.  I do not believe an autism diagnosis means we sit and do nothing to help our children, but I believe there must be a balance.  What we did was detrimental to all involved and I do not encourage anyone to follow in our footsteps.  All our hard work, the round the clock therapy, (more than 40 hours a week) the training, the evenings and weekends spent taking over once the therapists had gone home, did not ensure our child’s brain was rewired.  She was not mainstreamed within a few years.

This idea, popularized by the book, Let me Hear Your Voice by Catherine Maurice was NOT our story.  I do NOT recommend that book, in fact I urge parents to avoid it.  It was the first one recommended to me by Emma’s ABA supervisor and it set us on a very painful road of discouragement and disappointment, but perhaps even more importantly and destructive, it put into play the belief that Emma’s neurology could and should be “fixed.” And it pushed us further away from any degree of acceptance and eventually embracing and yes, celebrating our daughter for the amazing, uniquely beautiful being that she is.

That early intervention is so often equated with ABA is worrisome to me.  I hope this is changing.  People suggest it is, but when my daughter was diagnosed it was a given.  It was ABA or nothing.  Agencies offered versions of ABA, but it was still ABA.  My child was not helped by ABA.  I would not have done it could I do it all over again.  I’ve written about ABA before ‘here‘ and ‘here‘.  I know many of you feel it has helped your child, many have written to me and described some version of ABA that bears no resemblance to the method used with my daughter.   Evidently ABA has, in some cases, changed.  The bottom line is this – Does it presume competence?  Does it respect the child as a human being?   Is this a method I would use on a child who was not Autistic?

What I would have done when my daughter was first diagnosed was OT.  I would have enrolled her in gymnastics, trapeze school, swimming and I would have introduced her to a stencil board and AAC (Augmentative and Alternative Communication) devices.  I would have begun using Proloquo2go and many of the terrific Grasshopper apps had we had iPads when Emma was diagnosed.  And I would have begun working with Soma Mukhopadhyay.  In an ideal world all of these things would be a given.  All of these things would fall under “early intervention.”  All of these things would be available to ALL families despite their level of income.  These are the things that have proven to help my daughter.  All children may not respond to the things she has responded to.  But in an ideal world “services” would include an evaluation determining what things would help and a plan would be made.

In last week’s post I questioned those who are not Autistic and have little or no contact outside of a professional setting to those who are and yet call themselves “experts.”  I was not referring to the many professionals who are intimately involved in the autism community (and by that I mean the community of people who are Autistic) who have dedicated themselves to helping our kids and us so that we can be, not only the best parents we can be, but also equipped with information that will help us help our children flourish.  There are a great many of you out there, and to you I am incredibly grateful.  To all those professionals in the field of autism who are not familiar with Autistic blogs, books or do not have have any Autistic people in your life who are friends and colleagues, please become familiar with Autistic people’s work so you can tell parents.  Many parent’s first contact with anyone involved with autism, outside of their child, will be a therapist.

Please make sure parents know there is a growing population of adults who share our child’s neurology.  Even if that means just giving us a list of blogs and books written by Autistic people.  Ideally there would be programs in place that employed Autistic people, just as social workers, therapists, parent liaisons are employed. Autistic people who are interested in interacting with new parents and their newly diagnosed children would become a part of “Early Intervention.”

Ideally we would live in a society where we did not segregate those who were more profoundly affected by physical impairments and do not speak, so that all of us came into daily contact with those whose neurology was similar to our child’s as well as those with an array of impairments.  Perhaps families with older kids who are farther along in the process would volunteer to reach out and be available to other families new to all of this.   The point is that we could help each other more than is being currently done.

No family should feel they are alone, or feel the fear we felt or the terror and worry that dogged us every waking moment of those first years after my daughter’s diagnosis.  Years we spent in a state of almost constant panic that we should be doing more, that if we didn’t we were losing time, that our daughter’s life depended on it and that anything less meant we were failing her.

No one, who is given a diagnosis of autism, should feel they are alone.  None should feel less than or believe they are damaged or broken.  No child should feel ostracized or that the way they process and view the world is “wrong” or “bad.”  None should feel that because they are Autistic, they need to hide or feel abandoned by society. No one should be made to feel ashamed for the way they were born.  No one.  This is what I want to see change.  This is why I keep writing.  All of us can work together to create a world that embraces one another and encourages, rather than condemns.  Each of us can play a small part in making this happen, by increasing our awareness, by accepting difference, by working together.

**Em

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Posted in Autism, Parenting, presume competence

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Autism “Experts”

Posted on July 5, 2013 by | 57 comments

Yesterday Emma asked Richard a question.  It was a question she’d never asked before.  It was a question that made us both inwardly gasp and later discuss at length.  It was one of those things that was noteworthy and made us both rejoice.  It was an example of progress, not just Emma’s, but as I’ll explain, our’s too.  Emma’s reaction to Richard crying out when our impish kitty, Merlin leapt onto his back, was what one might expect, except it wasn’t.  As all four paws, claws extended made contact with Richard’s flesh, Richard howled out in considerable pain.  Emma ran into our bedroom and asked, “What happened Daddy?”

Had we been in the midst of some “therapy” or “treatment” protocol, as we almost always were a few years back, we would have attributed this new, never-before-heard question to that therapy or treatment.  We would have felt a wave of euphoria, believing, even if only briefly, that this new treatment or therapy could be credited for her voicing such a question.  We would have remarked to each other that this was proof and only later, perhaps the following day or day after that, we might have questioned our conclusions.  We might have discussed any other significant thing that might have occurred or we might have waited with guarded excitement for the “next” wonderful thing that would prove to us, once and for all, without a doubt that this thing we were doing was making a difference.  As though our daughter would otherwise stagnate without our constant tinkering.  As though she would not make any “progress” without our various interventions.  As though autism meant complete stagnation and no movement of any kind.

Since we no longer adhere to this line of thinking, we simply spoke of what we’d just witnessed with joy, while shaking our heads at how fabulous it was that we are making progress along side our wonderful daughter.  And as we mutually applauded ourselves for the headway we’ve made, we attributed all of it, her question and our reaction, to what it was – life, maturity, learning, growth and the fact that we humans have a tendency to change and progress and how wonderful is that?!

No one told us this seemingly obvious fact when Em was first diagnosed.  No one told us this, probably because no one thought it necessary to.  Except that in my case anyway, it was necessary.  It was more than necessary.  It was required.  Because with all the misinformation we received upon Emma’s diagnosis, one of the implications was that massive amounts of intervention, forced interaction and jumping through a million hoops was more than necessary, it was required if we wanted to see any “progress.”  It was suggested that if we didn’t do all these things, we might as well resign ourselves to the idea that our child would never move beyond where she currently was.

“I can’t stress strongly enough the importance of diving into action immediately. Every expert in the field agrees that early intervention is essential and critical. The “wait and see” approach is detrimental to your child.” ~  Lynn Koegel and Claire LaZebnik

It should be noted, “Every expert” who is NOT Autistic, may believe this, though I’d argue with the word “every.”  It wasn’t until I began reading blogs written by Autistic people and talking with my Autistic friends, that I started to seriously question this idea.  I also began questioning the whole idea of what “progress” really meant, but that will have to be tackled in another post.  It wasn’t until I began questioning the idea, that I then began also questioning who exactly were these people calling themselves “experts” and how none of them were Autistic, nor did they seem particularly interested in hearing what Autistic people were saying.  Do any of you find it curious that so many of these so-called “experts” do not seem to personally know any Autistic people outside of a clinical setting?  The very people they say they are experts on?  Don’t you find that odd?

Can you imagine if a number of men claimed to be “experts” of women and what it is to be female, but none actually knew any women outside of their professional setting?  Can you imagine that when women spoke up or suggested these views were in direct contrast to what they, as women, lived on a daily basis, these male “experts” ignored them or suggested they couldn’t possibly know what they were talking about because women couldn’t be relied upon to make sense of such things?  Perhaps even suggesting that women tended toward hysteria and being overly emotional? Can you imagine laws being enacted that directly affected women’s lives and their bodies, with a complete disregard for how women felt about such laws?  Any of this sound vaguely familiar?

“What happened, Daddy?”

Em dressed as a pink poodle ~ 2007

Em- poodle

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Posted in Autism, diagnosis, Parenting

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A Recipe For Living a Good Life

Posted on July 3, 2013 by | 55 comments

Last night Richard and I had one of our conversations.  It’s the conversation that starts with, “If only we’d known what we know now…”  The conversation that continues with, “If only we’d known our friends, particularly the ones whose neurology we don’t share, the ones who are Autistic…”  It’s the conversation that ends with both of us looking at each other and shaking our heads until one of us says, “We would have done everything differently…”   And then the other joins in with, “Literally.  We would have literally done everything differently!”

One of the biggest motivators I have for continuing to blog about autism is this idea that everything would have changed had we known what we know now.  How different our lives would have been had our introduction to autism not been abject fear, but to adults who are Autistic.  How different our approach would have been had we not reacted to the news of our daughter’s neurology with terror.  How much money, time, energy, not to mention pain would have been avoided had we not listened to all those non-autistic people who greeted our daughter’s diagnosis with, “Here’s what you need to do…”  “Here’s the name of a therapist/neurologist/homeopath/nutritionist/DAN doctor, call them now!”  “You should try…”

I’ve written about all of this before, but since I typically blog Monday through Friday, many of you may have missed those posts, so here are just a few…

What I Wish I’d Been Made Aware Of When My Daughter Was Diagnosed With Autism
How Fear Drove Me To Pursue A Cure
We Are in This Together
A Fantasy For Parents of Newly Diagnosed Autistic Children
To The Person Who Googled “I Don’t Know if I Can Handle Autism”

What we were told about autism was WRONG.  Everything we were told during those first few years after Emma was diagnosed have NOT proven to be true.  Having an Autistic child does not mean the entire family will be dragged down.  No one need “sacrifice” their life to support another, in fact, our lives are enhanced by each member of our family.  Each of us brings something unique and special to the family. Having an Autistic child is not the same as having a child diagnosed with cancer, this comparison is incredibly hurtful to my child, to your child, it is offensive to all of us.

We have been told all kinds of things about our daughter by non autistic people.  Not one of their predictions has come true.  NOT ONE!  Read that again.  Nothing we were told would happen, actually has!   Think about that.  Being given an autism diagnosis for your child is like listening to an anchorman predict the weather a year from now.  But we believed every single one of those pronouncements and then behaved as though each dire prediction was fact.  If I’d known all the people I know now, the people I’ve interviewed, whose blogs I read, all the people I am fortunate enough to call my friends, who have changed my life and helped me understand autism and what it’s like living in a world that doesn’t accept them, growing up with parents who believed they were doing what was best for them, but who were being told the same sorts of things we were told… Had I known all those people when Emma was first diagnosed, our response to the pronouncements and predictions given to us would have been to laugh and walk away. Literally.  We would have laughed and walked away.

We would not have hired the agency who provided us with round the clock therapists.  We would not have shuttled Emma from one doctor to the next.  We would not have spent all those nights lying awake, staring at the ceiling fearing what would never come to pass.  We would not have lost all those years, years we could have spent actually enjoying and loving our child, but that were spent in fear, engaged in a war on her neurology.   All those years when Richard and I felt beaten down, could have been spent embracing this amazing being who has taught us so much.  The challenges any parent faces, exhaustion, sleepless nights, worry, these would certainly have been a part of our story, but the terror… the terror did not have to be a part of it.

So here’s the truth about my Autistic child:

She is a human being with desires, wants, needs, emotions and feelings, just like any other child.  If I treat my (Autistic) child the way I would want to be treated, with unconditional love, respect, encouragement and support, I will have been a good parent.  If I can be kind, patient, vulnerable and willing to examine my preconceived beliefs about what it is to be a human being, while making amends for my mistakes;  I will have led a good life.

Emma and Nic ~ 2003

Em & Nic - 2003

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Posted in Autism, fear, Parenting

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Shame, Addiction & Autism

Posted on July 2, 2013 by | 9 comments

“We all have shame.  We all have good and bad, dark and light, inside of us.  But if we don’t come to terms with our shame, our struggles, we start believing that there’s something wrong with us – that we’re bad, flawed, not good enough – and even worse, we start acting on those beliefs. If we want to be fully engaged, to be connected, we have to be vulnerable.  In order to be vulnerable, we need to develop resilience to shame.” ~ Daring Greatly by Brené Brown

I’ve written about shame before.  A couple of commenters on my last post about shame told me to watch Brené Brown’s TED talks on vulnerability and shame, which I did.  B. Brown also has several books, Daring Greatly, is the one I’m currently reading, where she writes, “A sense of worthiness inspires us to be vulnerable, share openly, and persevere.  Shame keeps us small, resentful, and afraid.”

Shame is something I am intimate with.  I don’t know many addicts who aren’t.  I’ve written about addiction and specifically having an eating disorder ‘here‘, ‘here‘ and ‘here‘.  The self-betrayal implicit in addictive behavior exacerbates the pre-existing shame, creating depression and self-loathing.  Attempts to alleviate those feelings with addictive behavior only fuels them.  Shame heaped upon more shame is not a recipe for happiness or success.  Ignoring shame, trying to bury it, and trying harder to not feel it, doesn’t work either.

There have been a number of studies suggesting a link between addictive behavior and autism.  I don’t find this surprising given how feelings of alienation, isolation and fractured self-worth all contribute to wanting to seek refuge and escape. Except the thing we are trying to escape from is often ourselves.  Many of us have internalized our shame, particularly those of us who tend toward perfectionism.  Add to this obsessive tendencies, a desire to be loved, wanting to fit in, believing we are “less than” and addiction can feel like a perfect fit and the only way we can survive in a hostile, unaccepting world.

Oddly, we, as a society, tend to attribute laziness and a lack of will power as the reason people eat too much, drink too much or spend more money than they make.  Similarly, people seem to think autism is a choice or at least the behaviors associated with autism are.  These people apparently believe Autistic people can  “lose” their “autism” if they can just be trained to hide their “problem” behaviors or the things they do that make them obviously Autistic.  Many Autistic people talk about being scolded and punished when they were unable to produce the results expected of them when told they needed to “try harder.”  Trying harder will usually make the person feel more terrible about themselves.

I worry about a culture that is conditioned to believe we must ‘train’ our Autistic children to behave in ways that most cannot, or cannot without a massive cost to their self-esteem.  I worry about “autism treatments” and “therapies” whose underlying message is that our children are not okay.  I worry about what our children are internalizing.  I worry about addiction, depression, suicidal ideation, and how those things get set in motion at a very young age from feeling we are “bad,” not worthy and less than. I worry that because many do not understand autism is a neurological wiring, or do not take into account the experience so many Autistic people are describing, we are raising fearful children, filled with shame for who they are as human beings.  Instead of helping our children flourish, encouraging them to be all they can be, we are trying to make them into something they cannot be.

I love this photo of Emma because it captures her in all her Emma-ness!

Emma - 2002

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Posted in Autism, Parenting, shame

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Living Independently on the Autism Spectrum: by Lynne Soraya

Posted on July 1, 2013 by | 22 comments

Unknown-1Living Independently on the Autism Spectrum by Lynne Soraya is described as “What you need to know to move into a place of your own, succeed at work, start a relationship, stay safe.”  In fact, it’s a great deal more.  Lynne, who writes for Asperger’s Diary in Psychology Today and works for a Fortune 500 company, covers everything from proper conduct and attire at a job interview, what to do when stopped by the police, setting boundaries, career goals, work related issues and self advocacy.  My copy is filled with highlighted sections and notations, such as this quote regarding boundaries:

“The unfortunate reality for many on the spectrum is that the training that we receive to help us to “blend in” to the wider world can have the difficult side effect of teaching us to ignore our own boundaries.

“We learn to tolerate pain and discomfort of situations beyond what many others experience in order to appear more “normal” or to “fit in.”

In the margin I scribbled – “encourage a sense of self, listen, honor and respect.  Attempts to teach how to “fit in” ensures the opposite within one’s own self. Feelings of being a fraud.”

And this, in her chapter on safety:

“There are times when you will not want to make eye contact.  For example, for men, making eye contact while in the bathroom or at the urinal may be completely misunderstood.”

I wrote in the margin, “Privilege = never having to think about things like this.”  And, I would add, not only never thinking about something like this, but never having the thought occur to me to think about something like this.  Many of the things Lynne writes about are not only things I’ve never had to think about, they are things that have never even occurred to me to think about.

Another sentence I highlighted regarding encounters with law enforcement:

“If you are concerned as to how your body language or speech patterns may be perceived by the officer or first responder, let her know that you have autism and/or provide an autism information card.  Before you reach for the card, however, indicate to the officer either verbally or with gestures that you will be reaching into your pocket or wherever the card is located so that the officer will not think you are reaching for a weapon.”

And this about job interviews:

“However, the way many charities represent autism, mixed with our culture’s very simplistic understanding of what disability is all about, can be devastating to many of us who are seeking deeper inclusion in the world.  The reality is that I, you, and everyone else on the spectrum need to help the world understand that having challenges – even extreme ones – does not mean a person does not have abilities and contributions to make to the world.  Ability isn’t a binary thing.  Unfortunately, many people who have limited experience with disabilities tend to act like it is, so when challenges are emphasized, lack of ability is assumed.”

Throughout this book I thought about my daughter.  I thought about how, as she grows older, she may encounter, at least, some of these issues.  I thought about how she put music to a slide show of photographs on her computer last night and was so excited because I came in to watch it with her and told her how impressed I was.  I thought about how creative she is with language and how she comes up with ideas and ways of saying things that would never occur to me, I thought of her joy in music and how when she dances, she is without inhibitions or self-conscious thought.  I thought about society and how so many would suggest we “train” her to conform, fit in, and how, many believe, it is all for her own good.  And I thought about how I hope my daughter never feels she must betray herself to appease or please others.

Lynne’s thought-provoking and insightful book is available in paperback and on kindle at Amazon.

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Posted in Autism, independence, Parenting

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Disability and Society’s Role

Posted on June 28, 2013 by | 39 comments

I have to preface this post by saying I’m still grappling with all of this.  I recognize that while I can intellectually understand something, it takes me much longer to completely “get it” to the degree that I can own it and incorporate it into my thinking.   Perhaps this is a specific quirk to my neurology…  Here goes – Yesterday afternoon something came up that I didn’t understand.  It was surrounding the words “disability”, “impairment” and the role society plays.  It was stated that autism is a neurological difference that can create certain impairments.  Impairments that can lead to disability when not accommodated.  I didn’t understand the concept at all.  I couldn’t wrap my mind around society’s role in creating disability by not accommodating.  I need to backtrack here for a second. Stay with me…

My father was in a wheelchair the last decade of his life due to a horseback riding accident that occurred when he was 40 years old.  Most of us, who do not require a wheelchair, probably don’t think about what can happen to the human body as a result of not being able to stand and walk around.  There are things that often occur as a direct result of being in a wheelchair for the majority of one’s waking day.  Things like sores, atrophied muscles, metabolism changes due to inactivity, which can lead to constipation, a greater risk for infection, etc.

My father’s accident was my introduction to “disability” as the word my father used to describe himself.  I didn’t spend much time thinking about society’s role beyond the easy to spot prejudices people obviously had upon seeing him, how some people were worse than others, either in the way they spoke to him with barely concealed pity or the way they raised their voice or slowed their speech as though he were intellectually impaired as well.  I was acutely aware of the many places he could not go because they were not accessible to his wheelchair.  And I was aware of the physical pain he was often in. But I didn’t think society played a role in creating his disability, but rather it exacerbated it.

I’m going to interrupt this train of thought for a second while you watch the following short video (1:26) via Ollibean, the terrific site that “unites disability-centric news & editorial led content- connecting families, self-advocates, & professionals through social conversations.”

This article (by  Lisa Egan) is a great one, sent to me by the wonderful, incredibly, kind and extremely thoughtful, Nick Walker, who is interviewed ‘here‘ on Shrink Rap Radio.  After I watched the video and read all the links, I felt I was beginning to understand.

My father’s accident left him physically impaired, but with the necessary accommodations in place he could still get around and do many of the things he enjoyed.  His quality of life was greatly reduced because many of the things he once enjoyed, playing tennis, skiing, were no longer possible, but he could do other things, swimming, gardening, spending time outside.  (Still, I feel confusion and can tell, I’m not quite there yet.  I think I have an understanding, without completely understanding, if that makes any sense.  And I’m also getting hung up on semantics.  But I have to keep going with this.)  I understand my father was impaired, but was he disabled?  Obviously he was to the degree that society didn’t do a great job accommodating him, but what about his weakened body and the pain he was in that kept him from pursuing things he enjoyed and would have done had he not been in such physical pain, such as travel?

*Those of you who understand all of this, please feel free to jump in and correct me.  As I said, I am processing!

Autism.  When my daughter was diagnosed I didn’t think of her as disabled, in fact I remember resenting the notion that anyone might think of her as such.   I understood she was different, and, sadly, I also bought into the “disease” thinking, which I’ve written about on this blog.  As my thinking evolved I thought of her as neurologically different from the majority of people and as such would face more challenges in the world, than if she were not Autistic.  Still later, and more recently I thought that because she cannot reliably use either speech or independent typing to communicate yet, she had a disability, but that her disability had little to do with society and was very much a result of the many issues she faced, physically, emotionally and neurologically.

The idea that society could and should do more to accommodate her and those like her is something I have witnessed first hand and am fighting for.  Yet, this idea that society created her disability, either some or all of it, is a new concept.  So last night I spent many hours reading.  This post from Savannah on her blog, Cracked Mirror in Shalott is terrific with great links to four other bloggers whose work I have tremendous respect for:  That Crazy Crippled Chick – A Musing on the Word Disabled, Radical Neurodivergence Speaking – In this place, in this activity, I am not disabled, Yes, That Too – Ablism is to Blame and  Autistic Hoya – Constructing Disability.   And finally this piece from Sparrow Jones, Voices of Experience on her blog Unstrange Minds where she writes, “In contrast to impairment, Reindal writes about disability as the “barrier to being,” suggesting that the social constructs that view those with impairments as lesser beings, not worthy of inclusion or accommodation, creates an existential crisis that extends deeply into the disabled person’s core being.”

And this is why all of this matters so much.  Because we as a society are adding to impairment.  My child is Autistic.  There are things that are much harder for her to do than the majority of the population.  Her hardship is exponentially increased by society’s lack of accommodations for her and those like her.  This post about my experience at the AutCom Conference last fall is an example of simple accommodations  easily put into place.  My daughter’s life will be infinitely easier if people were better informed about autism and what that means.

Society plays a role in all aspects of her life, from the education system and how we perceive inclusion, to air travel, where she could be allowed to sit by the window to accommodate her need to look out the window to better manage her stress, just as someone in a wheelchair is given an aisle seat and not expected to sit just anywhere.  I could go on and on, but I’m interested to hear from all of you and hear your thoughts on all of this.

Emma and Henry type to each other with Pascal and Harvey’s assistance

H &E type

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Posted in Autism, disability, Parenting

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Person First Language

Posted on June 27, 2013 by | 27 comments

I wrote yesterday about an evolving fantasy of my ideal introduction to autism and what that might look like.  Later I was asked privately about ‘person first’ language.  An example of ‘person first’ language is:  “My child has autism” or “She is a person with autism” as opposed to:  “My daughter is Autistic.” This topic comes up repeatedly so I thought I’d tackle it with a post of its own.  The current language used to describe autism and Autistic people, starting with the insistence among many parents, educational institutions and the medical establishment to use person-first language (read Jim Sinclair’s Why I Dislike ‘Person First’ Language),  is all about deficits, comparing Autistic neurology (inferior) to non Autistic neurology (superior) which is self-serving, biased and continues to further the general public’s misperceptions about autism and Autistic people.

Shame based language, the things we say because we don’t know better, because we’ve heard or been told it’s how, whatever the topic is, should be spoken of, is still shame based language.  For a long time I didn’t understand why person-first language was objectionable.  It seemed “respectful” to speak of the person first before adding their neurology.  Except that autism brings with it discrimination, prejudice, misunderstanding, assumptions about intelligence or a lack of, and so suddenly all those people who are being so careful to describe this person, whose neurology is “Autistic”, are actually implying that they think autism is something to be avoided, it’s something we pity, it’s something we’d like to be sure the person knows, we “understand” and are being careful to give them “respect” except we are doing exactly the opposite.  When we have no particular issue with some aspect of a person, we do not make sure they understand we are aware they are part of the human race.

I will always respect anyone’s personal preference, but in general, I will continue to use “Autistic” because I am not ashamed of my daughter’s neurology and I refuse to convey that underlying message of ‘less than’ inherent in ‘person first’ language.

Autistic perspective on ‘person first’ language:

ASAN – Identity First Language
Shaping Clay – Person-First Language Doesn’t Put People First, It Makes Them Invisibly
Autistic Hoya – A Second Argument Against Person-First Language
Radical Neurodivergence Speaking:  I don’t have autism.  I am autistic.
Amy Sequenzia – I am Autistic

Em

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Posted in Autism, language, Parenting

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