Category Archives: neurodiversity

How we Communicate – A Podcast

Posted on May 24, 2016 by | 43 comments

*This was an assignment for English Composition to create a podcast about something you care about.  This is mine after many revisions and incorporating notes from my teacher.  A written transcript of the podcast is below, but if you can, listen first!

 

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Emma – 2016  Photograph by Pete Thompson

This voice?  The one that you’re hearing read these words?  Yeah, that one.  It isn’t my voice.  It’s my mom’s.  You’re probably wondering why a teenage girl would want her mom to read what she’s written.  In my case, it’s because I can’t read what I write out loud.  There’s not a direct line between my brain and my mouth.  It’s more like an elaborate maze.  I can’t speak so people understand what I mean.  If asked a question, my mouth says things that do not answer the question.  My brain doesn’t think in words the way most people’s do.  Names of things and people get handed to me instead of the words that would make sense to the person questioning me.  Sometimes I blurt out whole sentences from another time in my life.  (Emma’s voice) “I bounce a balloon to Emma.  I bounce it back to me.”  They may be images that remind me of the person I’m with or where I am, or words I’ve heard spoken by others, things that get caught in my mind, or unrelated scripts, but that convey the exact emotion I’m feeling.  (Emma’s voice) “No more ice skating.  Ice skating’s gone.”  In any case, what I manage to say usually baffles the people I am speaking to, causing them to misunderstand me.  Not being able to speak what’s in my heart so that others are able to understand can be challenging, but I can type things that I cannot reliably say.  There are computer generated voices that say the letters as I type them and sound like this – (Computerized young girl’s voice) “I am your friendly computerized female voice.  I sound like I’m maybe five years old.”  (Another computerized young girl’s voice) “Or I can sound like this and pretend I’m British.  But yeah, it’s just not me.”  Or I can sound like this.  Okay it’s not my voice, but with some direction, Mom sounds better than a computer.

Imagine for a minute that you can’t talk to people in any way that makes sense to them or you.  Imagine if every time you opened your mouth to speak other words tumbled out.  If you are like me, you might get used to not answering people’s questions or being able to stay on topic.  So what would you do?  How would you interact with people?  Would you ignore their questions?  Pretend you didn’t hear them?  How would you express yourself?  Maybe you would try to connect with scripts you’ve memorized, things you’ve heard other people say in similar situations or maybe you’d find non-word based ways to communicate.  That’s what I do.

(Sound of footsteps, people talking and the subway)

Sound is everywhere.  I don’t have a filtering system marking one particular sound as more important than another.  Can you understand what I’m saying right now?  Mom had to raise the volume of her voice so that you could hear it above all the other noise.  My brain doesn’t do that.  It hears all sounds equally and does not discriminate.  But some people’s voices are not as dramatic to my ear as the honking of a horn.  I love the sound of honking horns.  (Horns honking and traffic noise)  Favoring some sounds dilutes others, but music has the best sounds of all.  (Body Knows Best – Anya Marina)

Music is my first language.  It is a friend who loves me unconditionally.  It’s there when I need it and does not shed a tear if ignored for some time.  Music is a positive force as it stands by my side.  I like hearing the same melodies repeated and did so even when I was very young.  It’s been a comfort to me as long as I can remember.  Music grounds me and plays a huge role in seeking my creativity as it allows me to perform as I choose to.  It’s a way to communicate; it gives me hope, tells me I am not alone and inspires me to create.  Though people respond differently to music, I believe there are always emotions involved. Music has the ability to transform my fearsome thoughts laden with anxiety and stress.  (Music fades out)  It calms me and this has been the case throughout my life.  When singing lyrics I stumble and have trouble articulating the words, (Lose Yourself – Eminem) but I can remember the sounds I hear and recreate them with my voice.  When I sing I am not apart from, but instead am part of.

Music can be both private and public, but it needs to be loud.  (Music gets louder) No one composes music in a whisper.  My body needs to feel the beat so that I can be consumed by it.  (Volume increases steadily and then fades)  When that happens I become part of the music, like another instrument or an extension of it.  I jump and dance and move.  My arms swing or are raised up and my head bops, my whole body keeps time to the beat.  I’m transported to another reality and it is in this alternate reality that I am most happy and comfortable.

At home my need for high volume can cause problems because the members of my family have differing sensory needs that come in direct conflict with mine.  (Heartless – Kanye West) My older brother has to have music as background, while I perform alongside, so it makes sense for mine to be public and his to be private.

(Emma’s brother)  “Yeah I think it’s totally fair that you’re able to use the living room.  It’s not like you play bad music or anything.  If you played music I didn’t really like, I’ll just shut the door and go in my room and hang out.”

My mom and dad both work at home and need quiet in order to concentrate.  I am told to wear headphones, which encumber my movement and dilute my experience.  My family has worked out a solution that allows me to commandeer the living room in the evening.  For several hours I am blissfully able to indulge my love of loud music and dancing while my brother stays in his room or hangs out with my parents in theirs.

Until about a year ago I didn’t know the joy of creating music.  Until then I was an audience member, but not a participant.  My parents encouraged my love of music and hired teachers to help me expand my interests.  Guitar is beautiful to listen to, but it is difficult for my fingers to recreate the sounds flowing through my mind.  Piano is also hard and requires dedication and lots of practice, but I think it’s a better fit for me.  Singing is easy and my lack of inhibitions, great sense of tone and ability to mimic sounds I hear makes it the best choice of all.   Eliot is my piano teacher and Karen is my singing coach.  Eliot came first.

(Eliot) “Emma has a great ear.  She can learn to sing new melodies really quickly and accurately.  Recently she’s been listening to the car horns outside and sings their exact pitch.  Emma is a fun, expressive and creative singer/performer.  She brings a lot of life, passion and feel to the material.”

Karen came next.

(Karen) “Emma has really great pitch control.  She knows exactly how the melodies go whether she knows the words or not and she makes it a real point to study each specific thing that happens in the song and can honor each thing in the song by movement and she can also emulate the sound really well as far as consonants and vowels.”  

(Gimme Resurrection – Anya Marina) Karen and I have great fun together.  I feel at ease in her presence, which is important when you are learning new things and trying to be creative.

Eliot and Karen have taught me to be patient with myself.  From them I have learned how hard it is to become masterful and yet I’ve decided it’s better to love the process of learning as much as the final product.  Communicating isn’t just talking, it’s developing a connection with another.  Music connects us all.  I wrote these lyrics and composed this melody, so this voice?  Yeah, this one’s mine.

Emma sings Over and Coming
Eliot Krimsky on keyboard

The girl’s going in the bed
the girl is going inside
the girl is going outside.

Who is this girl I see?
Who is that girl I see?
Watch careful-ee-ee-ey
Listen to me-ee-ee

Over and coming and over and coming,
over and coming and over and coming

Go, go, go,
go, go, go,
go, go, go, go

Go, go, go,
go, go, go,
go, go, go, go

Find a way
to seize the day
Dare to be the leading girl!

The girl walks out the door
the girl walks in the door
the girl is a teenager.

I am the girl you see,
I am this girl you see,
Do you believe in me?
Please do believe in me.

I’m ready to fly if you let me,
I’ll go
Turn up the music and
just don’t say no.

Starting and going and starting and going
starting and going and starting and going
Starting and going

Do, do, do, do, do, do….

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Posted in anxiety, Autism, autistic, Autistic Blogs, Autistic communication, Blogs By Autistics, body/mind disconnect, communication, conversation, disability, Echolalia, inclusion, language, music, neurodiversity, perseverative speech, presume competence, reading, reading & writing, saying one thing meaning another, scripting, self-advocacy, sensory issues, special needs, Speech, typing, typing to communicate, unreliable speaker

“Autistic People Are…”

Posted on March 2, 2013 by | 10 comments

*Following on the heels of the tremendously successful “Autistic people should…” flash blog last Saturday, today’s flash blog has bloggers adding their thoughts to “Autistic people are…”

Autistic people are…   

human beings.  

with the same rights as anyone else.  

equal.  

as diverse as those who are not Autistic.  

Autistic people are.  

Welcome to the human race.  

Now let’s start treating them as such.

For some history and the flash blog link, click ‘here‘.

As a direct result of last Saturday’s flash blog and thanks to the hard work by Yes, That Too, Unstrangemind and many other Autistic bloggers, this happened – Google Changes Policy for Autism 

While those policies have not yet gone into effect, it is hopeful news and a wonderful first step.

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Posted in Autism, human rights, neurodiversity

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“Autistic People Should…”

Posted on February 23, 2013 by | 10 comments

Today is “Autistic People Should…” flash blog day!  Please take the time to read these terrific posts by Autistic people who are blogging in to change the current views by non-autistic people of what Autistic people should or should not do or be.  Autistic people are taking these three words today and making them their own.

The Autistic People Should… Flash Blog

To give all of you an idea of what comes up if one types “Autistic people should” into a google search box at the moment ~

Yeah.

This has to change.  WE can change this, all of us, together, by spreading the word, sharing the flash blog link, tweeting the posts.  Let’s help change the way we think about autism and Autistic people.  We ALL benefit when we work toward ending oppression and respecting every person’s right to exist.

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

Posted on January 23, 2013 by | 10 comments

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

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Posted in Autism, Autistic Role Models, neurodiversity

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Two Autistics Spoke. How Many Listened?

Posted on November 30, 2012 by | 68 comments

Yesterday C-Span covered “Lawmakers Look into Federal Response to Rising Rates of Autism.” For those of you interested in seeing all 3 hours and 48 minutes of it click ‘here‘. You can also read all eight transcripts of testimony by clicking on each link ‘here‘.

There were two Autistic people of the eight who spoke.  This, in and of itself was significant.  The last two speakers were Michael John Carley, executive dircetor of Global & Regional Asperger Syndrome Partnership (GRASP) and Ari Ne’eman, President of Autistic Self Advocacy Network.

Michael, at one point said, “…research is geared towards the future, and not where the greatest need lies, which is in the present. Today, the amount of services we collectively provide is like one page out of War and Peace when compared with what’s needed.”

He went on to talk about language, “Tone, and language may seem like pc-nonsense semantics to many, but not to someone on the spectrum who grows up having to hear words like “cure,” “disease,” “defeat,” and “combat” …”

“Such negative self-imagery makes self-esteem so much harder to achieve for an individual who is at a psychological disadvantage enough as it is. We have to remember that the vast majority of this population can read what is being written about them, and hear what is being said about them.”

Ari Ne’eman spoke last.  His was a riveting and powerful speech in which he spoke to the “epidemic” of Autism, “If we want to put the idea of an “epidemic” to the test, one of the most compelling lines of research we could pursue is an epidemiological study of the rate of autism among the adult population. A recent study of this nature conducted by the United Kingdom’s National Health Service found a comparable rate of autism in adults as in children in England.” 

Ari spoke of those who are non-speaking Autistics,  “If we invested a mere one-tenth of the amount of money that we currently pour into causation into empowering Autistic people to communicate, that young man and hundreds of thousands more like him would be able to communicate their needs to us today.” 

He went on to point out, “Autism Speaks and the Simons Foundation – devote even less to these areas, with Autism Speaks investing approximately 1% of its research budget to studies on the quality of services to Autistic people (and less than one quarter of a percent to Autistic adults) and the Simons Foundation making no investments in either area. It cannot be doubted that when it comes to the needs of Autistic people today both the public and private research agendas are quite simply not responsive to the priorities of the Autistic community, itself. ”

And he talked about the importance of Medicaid, the importance of providing assistance to those just entering the work force and those who would like to, but do not have the supports in place to do so.

Ari ended with – “I want to thank the Committee members for allowing my community – the Autistic community – the opportunity to have a voice in these discussions. The challenges society currently faces in integrating and supporting Autistic people and our families are not new. We have faced these challenges and made tremendous progress with other disability groups in the past. I believe that at the end the day this is a civil rights issue. I believe in the ability of the United States of America to guarantee the civil rights of all of its citizens. Autistic people want and deserve the same things that anyone else wants – inclusion in our communities, the opportunity to go to school and get a good job, the chance to make our voices heard about the things that matter to us. With your help, we can make that a reality.”

His final words were, “I look forward to hearing your questions.”

I was eager to hear the questions that would undoubtedly be asked of both him and Michael after such terrific speeches, particularly as they are both Autistic, the very people this entire hearing were meant to care about and want to help.   So I waited.  And then I waited some more.

Finally there were a few, but the majority of people who spoke continued to repeat those words that Ari and Michael had cited, as though they’d never been said.  It seems we care about Autism and our Autistic children specifically, but when it comes to “Autistic people” in general, we don’t care so much.

And so I’d like to know, Why is that?

How is it that we can say we “care” about Autism and those who are Autistic yet not fund programs that will make their lives better?  How is it we can use words usually reserved for war and ignore that these words make those who are on the spectrum feel badly about their very existence?  Is this how we want our children to feel?  Do we really want our own children to feel their existence is called into question?  Let’s just say, for the sake of argument, that our Autistic children, whether they speak or not, whether they are in a special education classroom or are mainstreamed, let’s just say, ALL of them can and do understand what is being said about them, but they cannot tell us or do not have the ability to communicate how that feels.   Can we at least imagine what that would be like if this were done to us?  Can we try, just for a moment to have the “empathy” needed to imagine?   Are we compassionate enough to pause, even if for a moment and consider the implications of what we are saying and doing?  Even if we cannot or do not want to think about all the Autistic adults whom we do not know, can we just think about our own child?  Our children will be adults one day, do we really want them to feel as so many Autistic adults do?  Our children have feelings.

Ari is Autistic.

Michael is Autistic.

Both spoke.

How many listened?

My Autistic daughter, Emma – 2002

Emma - 2002

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Why? I Want to Understand…

Posted on November 8, 2012 by | 96 comments

I’m one of those people who, when told to do something that doesn’t make sense or that I can’t figure out the reasoning behind the request, questions it.  I don’t mean I think about it, while silently complying.  I mean I question the thinking out loud as in, “Why are we taking 8th Avenue, when we could take 10th?” or “Why are they asking for the last four digits of my social security number when I just gave them my passport number and anyway it’s a domestic flight?” or “Why take the ice out first when we could just put everything on top and then scoop ice around it?” or any number of other questions that so easily slide from my brain to my mouth before I can stop myself.

I can’t help myself from asking, “Why?”  By the way, I am also married to someone who does the EXACT same thing.  Some people would call this controlling or being defiant, but I see it as a need to understand the reasoning.  Sometimes when someone explains to me their reasoning, I get it, it makes sense and we can carry on, even if I don’t agree with it.  But many times the person explains their reasoning, it still makes no sense and that’s when things get problematic.  It is at this point I have a couple of choices, I can comply, do something that makes no sense to me, which is physically painful, it literally hurts to do whatever it is or I can refuse to do it while explaining why I cannot or I can ask for further clarification.  I tend toward the last two options.  I’m all about clarity.  I’m really not trying to cause problems or be difficult, I really am interested in understanding another point of view.

There are other questions I have that have nothing to do with any requests being made of me, but the answers affect me or someone I love.  Which brings me to a question that’s been very much on my mind recently.  It’s a question that has nagged me since I read Lydia Brown’s piece – Protesting Autism Speaks  on her blog Autistic Hoya – why don’t people who say they care about Autism want to hear from Autistic people directly?  I’m actually being very serious with this question.  I want to understand the thinking behind this.  Because, you see, when I finally found Autistic people who were writing blogs, I felt like I’d hit the jack pot.  When I read Julia Bascom’s blog Just Stimming it was like a beautiful universe unfolded before my eyes.  When E. of The Third Glance reached out to me that first time I read her comment and literally wept with gratitude.  I think I read her comment a dozen times.  When I met Ibby of Tiny Grace Notes at the Disability Conference in New York City, she may as well have been the President of the United States, I was so thrilled.  When she flapped because she was excited to meet me, I felt so completely flattered, it was all I could do not to jump up and down with unadulterated excitement.  I felt profound relief because:

1)  they are Autistic adults and until I found them, I personally knew none
2)  they were describing their thought processes, their experiences, their lives and it gave me insight into how my daughter may be processing the world too
3)  they introduced me to concepts I’d never considered, such as: Presuming competence and not speaking about my daughter as though she couldn’t understand, including my daughter in decisions that affect her and not speaking for her.
4) The whole idea of being talked about as inferior, as a deficit, as a tragedy and how that directly affected their self-esteem.  This last seems so obvious in retrospect, but it was something I hadn’t considered.
5) Having relied on other parents and so-called “autism professionals” up until my daughter was 10 years old, I was incredibly grateful to meet Autistic adults who were able to explain the experience of being autistic first hand. Their experience has helped me help my daughter more than anything else I’ve read or been told.
6) Many of the autistic adults I now know aren’t that much older than my daughter and I found it comforting to know there is a whole community that she may one day choose to join.

I do not read or speak with my Autistic friends and assume they are speaking for Emma.  I don’t assume Emma will grow up to be just like Julia or E. or Ibby or Chou Chou or Paula or Amy.  Each of these women has helped me help Emma far more than any “autism professional” has.  The Autistic men and women I know give me hope.  Hope, not just for Emma, but for ALL our children.  Hope for our world and our future.  I feel grateful to them.  I’m profoundly grateful that they’re blogging, speaking out, protesting, reaching out and asking to be heard.  Maybe one day my daughter will be among them.  I would hate to think that Emma, having worked so hard to communicate, in whatever way that may be when she’s an adult, having worked up the courage to ask a complete stranger, “Want to hear from me?  Want to hear what I have to say?” would be answered with silence or an abrupt “No.” I cannot imagine how painful that must be.  I cannot imagine what that does to one’s sense of self to be met with such outright hostility.  And I don’t understand why.

I am seeing that my experience is not the experience of others.  I do understand that, but why?  Why don’t people see those who are Autistic and can communicate, whether by typing or speaking , as a good thing, as a hopeful thing?  Why is it that some parents don’t want to hear from Autistics who can communicate?  What am I missing here?  Really, I want to understand this.  Help me understand.

How could you NOT want to hear what she has to say?

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The Latest From Autism Speaks

Posted on October 11, 2012 by | 37 comments

This is the email I received this morning.  It’s from Autism Speaks.   Please read and let’s discuss…

“CONTACT THE CAMPAIGNS TO LET THEM KNOW WE WANT OUR 1 IN 88 IN THE DEBATES!

Dear Ariane ,

We had a significant presence at the first Presidential Debate at Denver University last week. We are going to have an even bigger presence at the next two debates to show the candidates how big the autism community is!

We need your help to make the autism community, and all of our issues, a squeaky wheel in this election season. For the next debate, we don’t want just a mention of autism.

We want the candidates to discuss a plan for leadership on increased funding for dedicated autism research and appropriate health insurance coverage for all Americans with autism.”

In the first statement Autism Speaks writes, “… we want our 1 in 88 in the debates.”  When they say “we” am I one of the “we”?  “We are going to have an even bigger presence at the next two debates…”  We are?

“Our” is a curious word to use when speaking of a group of people, many of whom can speak for themselves and those who cannot “speak” are capable of communicating, through typing or other means of communication, their thoughts and ideas.  “Our” is a pronoun implying ownership or at the very least lends a sense of unity and inclusiveness as in “our politicians,” “our neighbors,” “our friends”.   What Autism Speaks is really saying  is “our Autistics.”  I don’t think the people I know, whether Autistic or not, would take kindly to that wording, but “our 1 in 88” somehow gets a pass?

“We want our 1 in 88 in the debates!”  Really?  Is Autism Speaks suggesting Autistic people should be up on a stage or at a town hall debating the presidential candidates?  It’s an interesting and compelling idea and one I whole-heartedly embrace, except I don’t believe this is what they mean.  “Behind every person with Autism is an army of support.”  I don’t think most of the people I know who are Autistic feel they have an “army of support.”  In fact most of the people I know who are Autistic feel they have very little, if any support.  But I’d really like those who are Autistic to weigh in here and say for themselves whether they feel they have an “army of support.”  Armies are usually employed to fight or fend off an enemy.  Who is the enemy and who makes up this army?  Am I part of the ‘army’ that is supposedly supporting my daughter?   Maybe me and Richard?  An army of two?  Where is the army of support that’s standing behind each and every “person with autism”?

Autism Speaks is much, much more than an organization attempting to raise awareness or one that insists they speak for Autistic people while doing nothing of the kind.  They are running a campaign, not a campaign that raises money to help those with Autism, but a campaign that promotes fear and generates terror.  Anyone who  has spent any time in the advertising business knows, fear causes people to open their check books faster than any other single emotion.  Autism Speaks does a brilliant job using language to convey other, more subtle meanings.

Autism Speaks is interested in having autism addressed by politicians, a worthy and important suggestion that ALL of us can agree on.  Except Autism Speaks is NOT a leader in showing the world how to INCLUDE Autistic people in the building and formation of their various programs.  Autism Speaks uses the words, “Autism Speaks it’s time to listen.”  But who is it they are suggesting we listen to?  Not Autistics.  They have positioned themselves as an organization which represents Autism.  They have self-appointed themselves as the “voice” of autistic people despite the vehement protests by so many who are Autistic.

Can you imagine an organization that suggested they spoke for the American people and yet were made up of people of some other nationality.  An organization which only had one or perhaps two Americans on their board, advisory committee or occupying more than one or two seats of the upper echelons of their organization?  Imagine for a moment how you would feel if an organization called themselves: “Americans Speak it’s time to listen”, yet those who were talking weren’t American and when you tried to say something you were routinely ignored.  Imagine how you would feel if this organization continued to insist they spoke for you and yet when you heard them speak you didn’t recognize yourself or any of those you knew.  Just imagine.

To Mitt Romney and Barack Obama:  please inform yourselves about autism by listening to those who are AUTISTIC.  That’s the discussion I’m interested in listening to, the one that includes autistic people and not those organizations that say they do and yet do not.

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AutCom 2012 Conference – The Best Kept Secret

Posted on October 8, 2012 by | 47 comments

The Autcom conference was a fleeting glimpse into paradise.  A tiny taste of how the world could be were we accepting of each other, treated all people as equals and with respect, without prejudice, without assumptions, without bias.  Autcom was a window into how the world could be, but isn’t.  Not yet.  Words do not do this conference justice.  How could they?  How do you describe a room full of people who are connected not through race, nationality, religion, political views or neurology, but instead are connected by an idea.  A vision.  How do you describe that?

Accommodation – it’s a word we hear, but what does it really mean?  At the Autcom conference it meant waving hands at the end of a presentation instead of clapping, lowered lights, snacks that included gluten-free and casein free items and non dairy alternatives.  Accommodation meant no one stared disapprovingly at anyone who stimmed or made noise or got up to leave in the middle of a talk.  Accommodation meant people were polite and moved chairs that might be blocking someone’s ability to come or go.  It meant using a microphone or repeating a question for those who weren’t able to hear the first time.  It meant being respectful and considerate when someone came up to peer at your name tag and it meant understanding that when that person gently touched your hand after a presentation it was their way of thanking you and I defy anyone to not see the beauty and love in that.  Accommodation meant slowing down while someone typed their answer or question or thought.  It turns out accommodation means being a thoughtful, considerate human being who is respectful of others.  How is it this isn’t done automatically, as a matter of course.  How is it that we as a society have drifted so far from this very basic and easy way of being in the world?

The single biggest issue I had with this wonderful conference was that there were too many terrific things going on at once and it was impossible to see and hear everyone and everything.  To give you an example of this – on the first day of the conference after Ari Ne’eman’s welcome and an opening keynote address by Jennifer Paige Seybert, was Savannah Nicole Logsdon-Breakstone’s presentation – Loud Hands Project’s Neurodiversity 101.  At the same time, Larry Bissonnette, Pascal Cheng, Harvey Lavoy and Tracy Thresher were doing a presentation on Supported Typing, which I really needed to go to in order to assess whether this might be something we could use to help Em communicate more effectively, but next door to them was Nick Pentzell, Hope Block, Jacob Pratt and Autumn Dae Miller presenting “Rated “R”: That Oh-So-Difficult Topic”.  I cannot tell you how much I wanted to hear them too and later heard from others that it was a not to be missed presentation, sadly though, I missed it.  Human Development Journey was presented by Cecilia Breinbauer about using DIR, which was the method Richard and I were trained in by the late Stanley Greenspan, after abandoning ABA.

Ari Ne’eman

Jennifer Paige Seybert

That evening after dinner and a wonderful performance by Jordon Ackerson who reminded me of Emma because of his beautiful voice, we watched Wretches and Jabberers, with a Q&A with Larry and Tracy.  This was my third time watching this documentary, which I posted about last month ‘here‘.   I asked them about self-injurious behaviors, something both engage in during the film.  I asked for  their opinion about the commonly held belief by many that SIBs should be thwarted and how parents and caregivers are often unsure how to deal with this.  Tracy typed, “That was years of frustration with no way to reliably express myself working its way out through my behavior the problem was lack of communication which pissed me off.”  Larry typed, “I lived in an institution so I was locked in arms of restraint its legal but immoral and only represses anger nothing looks more kind than softly spoken words and lit up smiles.”

Jordan Ackerson

Tracy Thresher

Larry Bissonnette

Read that again.  “… nothing looks more kind than softly spoken words and lit up smiles.”  The presentations were terrific, but it was what is possible that this conference represented, which affected me most profoundly. The AutCom conference was an example all organizations, who say they are interested in Autism and helping those who are Autistic, should follow.  Autistic people make up a large portion of their board, Autistic people led more than 50% of the presentations, the audience was at least half Autistic, if not more.  At my presentation there were more Autistic people than not, for which I was truly honored by.  The conference showed what the world could be like if we work together, reach out to each other, include everyone despite our perceived differences with love, compassion and kindness.  Accommodation is less about accommodating and more about getting in touch with our humanity and what it means to be alive and sharing this planet together.  Accommodation and inclusion means we ALL benefit.

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An Interview With Amy Sequenzia

Posted on September 6, 2012 by | 16 comments

Amy Sequenzia, a  non-speaking Autistic self-advocate,  poet and writer agreed to an interview with me.  Amy is someone whose work I have been following since I met her, this past spring.  Her powerful book of poems, My Voice: Autism, Life and Dreams can be purchased by contacting Amy ‘here‘.  Amy’s writing and poems are regularly featured on Ollibean.

Amy Sequenzia

AZ:  Hi Amy. Thank you so much for agreeing to this interview. You describe yourself as a self-advocate.  Can you tell us how that came to be?

“I think it was in PA when I had my first real contact with a group of autistics who where typing to communicate (The Lonesome Doves). That was in 2003 and I realized I could be speaking up for my rights to more people. After that I began writing poems that were a little bit about my life. Then I decided to write to, and meet with, legislators; was encouraged to write to newspapers and later for blogs.”

AZ:  You’ve described how people have spoken about you when you were present, as though you couldn’t hear them or understand them. Can you talk about what that feels like?

“It feels like you don’t count as a whole person. It is rude and frustrating because I can’t respond or will not walk away. It makes me sad when people who love me do it anyway. Some people even continue to do this after being reminded that I can hear, type and think.”

AZ:  Do you have memories of that happening when you were younger, before you could communicate through typing?

“Yes and I would get angry, frustrated, sad. Sometimes I would cry, sometimes I had a meltdown.

Sadly, it still happens.”

AZ:  Were there things you did, sounds you made, actions you took when this happened?

“I answered in the question before, but I have to add this: I don’t have meltdowns anymore. But I need to have my support person with me to make sure I can express myself, if I want to. Some people still don’t get it.”

AZ:  How did you learn to communicate through typing?

“It was a long and emotionally draining session with someone from the Institute on Communication and Inclusion (I think it was called FC Institute back then). I was 8.”

AZ:  There’s been a great deal of negative notions and even so called “studies” done regarding facilitated communication. Can you address this idea that FC is not an accurate or meaningful way of communicating?

“It is how I communicate, it means it is how I can have my voice heard.

FC is a process, with clear steps and a final goal – independence. It is not easy and many factors play a part in the process.
As far as I know, from all the people who say FC is a hoax, none of them has ever interviewed a user who became independent, or has acknowledged the many studies, including double-blind studies done by different facilitators with different users. All this is documented.”

AZ:  For those people who have only read the negative views on FC, is there anything that might make them understand what you experience when you try to communicate without FC?

“I am misunderstood. My face does not always show how I feel and I have other disabilities that prevent me from being more pro-active. My body can be stubborn. Without FC I don’t really participate in the world.

But it is important to know that sometimes I choose not to type and other times I might be too overwhelmed or tired to type.”

AZ:  Have you ever had a bad facilitator?

“Yes. When I was in school, sometimes people would try to facilitate with me without any information about the method. Some would guide my hand; others would not offer resistance or the right support. I could not type like this.”

AZ:  How did you cope with that?

“Sadly, I did not do anything. There was no encouragement from some and with others it was as if I was a piece of entertainment. I felt disrespected. FC is a lot of serious work. I had to wait until I met someone who believed in me and was committed to follow the best practices.”

AZ:  How long did it take you to learn to type?

“I took only the first session for me to find out that I could type. Typing is also a matter of practice and trust. Today I am more confident and I can type fairly well with trained facilitators after a few minutes. If I know they will follow the best practices and nothing else interferes (like a seizure or spasms), I type really well, even if I don’t know the facilitator well.”

AZ:  Is there anything you’d recommend to parents of nonverbal children who are hoping their child might communicate through typing and/or FC?

“Give your child every possible chance to communicate. Don’t believe in every article or every “expert” who says FC does not work. Go to the Institute on Communication and Inclusion (ICI) and question them yourself. Being skeptical is ok. That’s why dean Biklen and the others at the Institute do such a good job documenting everything.”  (Click for the link to the ICI website)

AZ:  My daughter Emma is just learning to read, write, and type. She is extremely resistant however. I’ve been told this is often the case. Were you resistant to communicating in the beginning?

“No. I wanted to leave the school/institution where I was living, so I had to make it clear. But it can be scary to have all the power to say things that can change everything.

I don’t know Emma. Maybe she just needs some time.”

AZ:  Do you remember what it was like in the beginning for you? Were there things that could have helped you more that what was done?

“I wanted to type. I could choose food, clothes, anything. Then I began typing my thoughts. Maybe Emma is not interested yet. It has to be her choice, at her own time.”

AZ:  What is your living situation like now?

“I live with friends. It is their house, but it is our home. We call it life sharing. I have state funding which is not good, especially in Florida. But because my friends respect me, I can have a life I can be proud of, and happy with.”

AZ:  Did/do you have a mentor? If yes, can you talk about that experience and relationship?

“My mentors are people who show me the many possibilities of my life. They don’t always know that.”

AZ:  I know several people consider you extremely important in their own process of learning to communicate and in their life. They think of you as a mentor. How has mentoring others changed you/helped you?

“I hope it has helped them. I still need mentoring. It is a good exchange of ideas, experiences, encouragement and support. It feels good to be considered important in someone else’s growth. It is lovely.”

“Thanks Ariane. This was a good interview. And thank you for being supportive of autistic voices.”

Thank you so much Amy for being willing to answer all my questions.  Please help me thank Amy, everyone!

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An Identity Crisis and Other Ramblings

Posted on August 31, 2012 by | 37 comments

*Warning – This post is written with humor.  If it offends, stop reading immediately and find another post.  There are lots of posts on this blog that are humorless.  Seriously.  Stop.  I mean go.  I mean…

My friend, Ib, (thank god she has returned from her various travels as I have felt decidedly “off” while she’s been away) and I were joking yesterday about the identity crisis I am currently undergoing due to the result I was given from taking the Broader Autism Phenotype test.  I was told “You scored above the cutoff on all three scales. Clearly, you are either autistic or on the broader autistic phenotype.”   It also said something about having an “aloof personality” something I’ve been accused of my whole life.  So I did what any sane human being would do – I retook the test.  This time the results said I had scored above the cutoff on two scales and therefore it was no longer “clear” that I was either autistic or on the broader autistic phenotype, but rather “likely” that I was.

And no.  I do not intend to take it a third time.  However I have resisted (so far) the desire to do a more thorough research of this test, how they are scoring it, exactly who is taking it, etc.  I so want to share my conversation with Ib, but didn’t think to ask if it was okay, so I’ll just share some of the tidbits from me, which is a pity as Ib had the best lines and is hilarious.  Ib is truly one of the funniest people I know, which, given the current view of Autistics being unable to understand irony and sarcasm, makes her so rare, she should be concerned that some autism specialist doesn’t catch wind of this lest they cart her off and stick her in a cage for more thorough examination.  But then those specialists haven’t gone on twitter and read tweets from my friends CoyoteTooth, HardAspie, TwinsMa, or AspieChap, nor have they listened in on FaceBook conversations with Brigianna, Kassiane, Julia, Rachel and countless others, all of whom have the whole sarcasm, appreciation for irony thing down to a science.

But I digress…  So in response to a hilarious, dry comment by Ib about my newly found status/nonstatus/questionable status I wrote:  “Ib… I do love you so.  And you really, really make me laugh, because you have that (oddly nonAutistic) humor, which clearly, despite being saddled with autism, you have managed to hang on to.”

To which she wrote something I cannot repeat.  And then mentioned one of the other myths regarding Autistic children, (it’s always regarding children and not adults because the common perception is that there are no Autistic adults and evidently never will be) which is that they are all so “exceptionally beautiful.”  This is something many have written about in a great many books, memoirs and on every single one of Emma’s reports and evaluations.  Each is prefaced with – “Emma, a beautiful little girl, of 5 years and 2 months, bounded around the classroom, only stopping to pick up a chair, which she hurled against the wall.  She spoke in one or two-word utterances, refused to obey any of the rules….” and the report would continue with the evaluator’s “observations” of Emma’s various activities as one might write about an animal under observation in the zoo.

So I responded to Ibby with this:  “…but that whole “oh they’re angels sent to us from God is crap.  I’ve heard the whole “unusually good looking” thing and I, personally do not see this as the case.  Sure there are lots of cute Autistic kids, there are also lots of really “cute” non Autistic kids.  I mean isn’t this the puppy syndrome?  Most puppies are pretty damn cute.  I think it’s that NTs expect an Autistic kid to look “weird” and so when they don’t they say, “oh she’s an angel, sent to teach us lessons that we’ve still not learned and never will, but while we’re NOT learning them at least we can feel better that the kid is so damn cute.

 SOS – Need Ibby home NOW..  Losing all patience with humanity’s stupidity…..  eeeeeeeeeeee”

Ib then responded with a whole diatribe that was so funny I laughed out loud and she ended said diatribe with the word – “sarcasm.”

I responded:  “I know you identified that last bit with “sarcasm” because now with my newly found identity you are assuming I’ve lost all ability to understand that that was in fact sarcastic.  Richard only this morning pointed that out to me and I tell you, it was an enormous relief to me.  Because now that it seems I am (at the very least) precariously close to being near if not ON the spectrum I will be humorless, incapable of understanding nuances and suddenly, miraculously very good at math, plus my IQ will take a massive leap upwards, for which I am extremely grateful.”

*To all whom I’ve now offended, this was not meant as offensive, but was poking fun at just a few of the ridiculous generalities, assumptions, theories and labels that continue to plague anyone who is Autistic.  And anyway if you reached this far and are still offended you clearly did not read the warning label, which suggests you are not good at following rules, coupled with your inability to see the humor, I therefore encourage you to take the Broader Autism Phenotype test.

My two exceptionally beautiful children (sarcasm, sort of)

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Wretches and Jabberers – Defying Labels

Posted on August 29, 2012 by | 43 comments

A few months ago, my friend Ib, gently encouraged me to watch the documentary Wretches and Jabberers.  It’s available on Netflix and iTunes.  I was traveling at the time, Richard was in Colorado, I was in NYC.  In addition I can’t be bothered with the four different remote controls required to watch anything on our TV, let alone find a specific movie, put it in the queue, figure out which remote(s) to use, download the movie and watch it.  Yeah.  I know.  When I see a TV, anywhere (unless it’s already turned on) I automatically walk away.  It’s like a Pavlovian response at this point.  If I’m home alone or just with Em, the TV screen stays dark.  And I’m totally f*cked if Em wants to watch something and presses the wrong button by mistake.  My 12-year-old son, Nic, has been known to pat me on the head and say in condescending tones, “Aw… Mommy.  It’s okay.  Let me help you with that.”  Really.  This has actually happened.  Several times.   So, yes, it took me awhile before I finally was able to watch Wretches and Jabberers with Richard on Netflix.  I cried.  I laughed.  Wow, what a documentary!  I’ll wait here while you go to the above link and put it in your queue.

Larry Bissonnette and Tracy Thresher are predominantly nonverbal Autistics.  Larry is a painter, lives with his sister and was institutionalized as a child.  He hits himself in the head when frustrated.  He is echolaic.  Tracy is homeless. *Please read Tracy’s mom’s comment on this comment thread as my statement is incorrect.*   In the documentary he has places he is able to go for a few nights here and there, but nowhere he calls “home”.  Both Larry and Tracy communicate through facilitators by typing.  The documentary follows them as they travel all over the world meeting other nonverbal Autistics.  The film defies the accepted and common neurotypical views and assumptions about Autism and what it means to be Autistic.  Powerful, funny, poignant, it is essential viewing for all human beings, not just those interested in Autism, because it rattles our unexamined biases, our beliefs, our perceptions and everything we are being “told” about autism.

A terrific discussion took place in the comments on yesterday’s post.  The whole issue of mentorship and hf/lf (high functioning / low functioning) was brought up.  One person mentioned how “our functioning level should be based on how we treat our fellow humans not whether someone judges another’s way of communicating or perceiving the world as correct, or less or greater than another’s.”  Her remarks made me think about the neurotypical world.  What if each of us were given a functioning label?  What if our lives, our abilities were reduced to a set list of priorities.  Let’s say each of us was given a “critique” of our ability to meet that criteria?

If I was put under a similar magnifying glass as Autistics, it could be argued (of course all of this is subjective and that’s the point) I would fall into the moderately functioning category for neurotypicals depending on the set of agreed upon priorities.  I do not hold any position of power.  I write a blog for which I earn not a single cent.  I publish occasionally on the Huffington Post, again, I am not “employed” by them, I submit pieces, they publish them, no money is paid for those pieces.  I am mother to my two children, I do my best to care for them, but I do not “make money” for the privilege of having two children.  I have my own business, I make a decent living (for a great many years I did not and barely was able to pay my rent.)

I flounder in the face of tests.  I score poorly on most of them unless I have taken the time to study the material to ensure I am able to breeze through and even then I tend to make mistakes.  I freeze up when I feel nervous or stressed.  My vocabulary can be spotty, particularly when in stressful situations, I go off on tangents, I have difficulty writing a standard 5 paragraph essay.  I shut down completely in the face of mathematical word problems.  I use lots of adverbs, sometimes I change tenses in the middle of a sentence.  Sometimes it’s hard for me to stay on track.  I’m terrible at most cocktail parties.  My interest in cocktail conversation wanes after the first 5 minutes.  I have a passing interest in the weather, a favorite topic at such events.  I have special interests that I can go on and on and on about.  I cannot remember people’s names.  I’m marginally versed in social networking.  I dislike most TV.  I cannot stand any show with the word “housewives” in it.  I am extremely sensitive.  I make social faux pas (what is the plural of faux pas?) often.  I am not patient.  I am a terrible liar.  The list goes on and on.

We neurotypicals are not held to the same scrutiny our Autistic brothers and sisters are held to though.  We don’t have to worry that we will be slapped with a functioning label, which will be prominently placed on our resumes.  But what if we were?  I doubt we’d sit passively, without resistance and “accept” this kind of limited categorization.  I think many of us would protest vehemently.  I think many of us would rise up, organize protests, argue for our rights as human beings, we would advocate for ourselves, we would fight,  just as gays, African-Americans, Women and now…  Autistics are.

Emma – 2008

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A Little Gratitude And Love

Posted on August 8, 2012 by | 21 comments

I have to begin this post with some gratitude.  Angela, whose blog – Half Past Normal – a wonderful blog I hope all of you will visit, reached out to me yesterday with a lovely comment.  As with all the comments people leave, I was left feeling so fortunate to be among such a wonderfully vibrant and diverse community.  Thank you Angela for thinking of me and reaching out to me.  It made me very, very happy.

I wrote yesterday about feeling off kilter, feeling what my father would have termed – je ne c’est quoi – I couldn’t put my finger on it, thought it was from all the travel and jet lag, maybe some overwhelm too, I didn’t know really.  But I’m closer now to what it is.  My friend Ib, whom I adore and carry with me in my heart at all moments, helped clarify it for me yesterday.  She calls it “weltschmerz” and she said, “it is located in your language of erosion of trust… disappointment… the need to help underscored with a note of (in my ears) not being sure it will work or anyone will listen… I think it is weltschmerz and I think it got in your body like it does for us and made your bones tired.”  The “us” she is referring to are all the Autistics who are advocating for change.  They are constantly working to change our thinking, our perceptions and the way Autism and Autistics are viewed and treated.

As I read Ib’s explanation I thought of @Coyotetooth who tweets poems in 140 characters or less and photos of his walks.  He is one of the many brilliant, kind souls who is quietly making a difference.  His post, Unshattered is just one example of his poetry on his blog CoyoteTooth13.  His tweets are the ones I try to find first thing in the morning. Sometimes if I’m very lucky I will come upon his and @AspieChap’s conversations, often conducted in rhyme, the best way to begin any morning, it seems to me.  Then there’s @Aspie_Warrior who is tweeting and blogging (blog – Aspiewarrior) about  what it’s like for him as Dad to AS son and NT family.  He writes, “This has led to me working as kind of translator in my household. Kind of a bridge between my NT family and my son.”

@SpectrumScribe with his wonderful blog, Postcards From the Edge of the Spectrum writes about his journey of discovery, revelation, acceptance and self-reconciliation.  He has wonderful suggestions for books and film in addition to his terrific posts.  There’s @AspieKid whose comments on Emma’s Hope Book have inspired whole posts  and who writes on his blog, AspieKid about his life and what it was like for him as a child.  There’s Laura Nagle, featured in the wonderful documentary, Vectors of Autism: Laura Nagle and gives one of the best monologues I’ve ever heard about what it is to be Autistic.

There is Amy Sequenzia and Peyton Goddard and Emma Studer, all of whom are nonverbal Autistics communicating through typing and whose words are having an impact.  One by one they are changing people’s perceptions of their children and what it means to be a nonverbal Autistic adult in the world.  There are countless others and I will try to include them in future posts, but these are all Autistic people who help me understand, who through their kindness help me forgive myself for the mistakes I’ve made, who have helped me do things differently.  Maybe they already know they are making a difference or maybe this will come as a surprise, but they are and they have.  They have made a difference in my life and by extension in my daughter’s life.

If there is one thing I can do with my writing and with this blog, I hope it is to inspire other parents and organizations to read what Autistics are writing and to interact with Autistic people.  If I can have any impact on the organization – icare4autism – it is to persuade them to seek out the advice of Autistics, to hand the microphone over to them and to work closely with them in moving their organization forward.   We parents can give each other support and cheer each other on, but it is Autistics who can best advocate for themselves, who can explain to the rest of us what it’s like, who can encourage us to not concentrate on deficits, but on assets and who can show us we are not so different.  We are, after all, human, regardless of our neurology.  Perhaps it is in sharing our commonalities, rather than our differences that will encourage people, all people to come together to help one another.

I have to end this post with my friend Ib.  Ib doesn’t have a blog, but she is a powerful presenter and advocate.  She also is my friend, someone who reminds me when I feel discouraged, frustrated, tired or angry that kindness was what changed things for me.  Kindness from Autistics who reached out to me and extended their hand not so long ago.  E. from the blog The Third Glance was one of the first, and I’ll never forget how much her comment on this blog meant to me.  Ib has not only extended her hand to me, but opened her arms in embrace, no matter my mood, no matter my lack of understanding, patiently, lovingly, she has given herself in friendship and I can only hope she feels my love for her in return.

Yesterday evening


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I Think I Finally Understand – But I May Still Need Your Help

Posted on July 18, 2012 by | 44 comments

I am reading I am intelligent by Peyton Goddard and Dianne Goddard with Carol Cujec.  I am not finished yet.  It is a powerful, beautifully written tale of triumph about Peyton who was denigrated, undermined, diagnosed as “mentally retarded” believed to be incompetent then learned to communicate through a facilitator as a young adult and proved everyone wrong.  Peyton’s story is shocking, heartbreaking and revelatory.  Her mother writes with a poetic beauty about her own evolution as she worked to help her daughter, refusing the labels being applied and yet allowing that they seep into our thinking unbidden despite our rejections of them.  I have been  unable to think of little else.

As I read Peyton’s and her mother’s words I finally understood why so many object to the labels of “high,” “low,” “moderate” when describing an Autistic person.  This is a concept I thought I understood, I certainly understood it intellectually, but I didn’t feel I completely understood until I was about half way through this terrific book.  I have felt uneasy when people have rejected the delineations for autism.  A  little voice in my head whispered those clichéd words, yes but if their child weren’t so high functioning they wouldn’t be so quick to dismiss these terms.  I admit to having felt uncomfortable and even upset when I read accounts of other parent’s struggles with their brilliant, verbose, hyperlexic children.  What I would give to have a child who could speak and think circles around me, I thought with envy.

Mostly I’ve remained silent, understanding that my thinking was limiting but unable to work out exactly why.  I felt the pull of other parents whose children are non-verbal, some violent in their frustration to be understood and unable to communicate. When those parents used the word “severe” it was a short-hand I thought I understood.  Yet, I read a blog of a parent who described her two children as being “severe” and then felt confusion when I read her posts because the children described were academically and verbally much more advanced than my own “moderately” Autistic child.  But I said nothing and tried to move on, understanding that I didn’t understand.

Finally I sent such a post to a close autistic friend whom I trust and knew would not judge me harshly.  I ranted and admitted how I felt.  She was patient with me.  She gave me the space to be confused, though it must have been difficult to stay calm in the face of my non-understanding.  Particularly as she is one who could be labeled “high” functioning and yet her teeth cause her pain when she is lied to, she suffers migraines and becomes overwhelmed, yet feels she has to pretend that she’s fine.  She carries the weight of not wanting to burden those who love her, because she “should” be able to deal with the things that she cannot.

As I read about how Peyton started to communicate by typing and how people began to see how intelligent she was, a little light went off in my brain and I got it.  Because (and this is probably obvious to many of you already, but I’m a slow learner you see) Peyton was labeled all sorts of things by people throughout her childhood, but those rating systems did nothing but hurt her.  Not one of them actually helped her, they didn’t support her, they were used to further segregate her and they were used by some to abuse her horribly.  As I was reading, I thought, right because Emma is considered “moderately” autistic, but she’s not moderately intelligent.  Her intelligence is extremely high, so what does moderate really mean.  Is that how she “seems” to neurotypicals?  But how is that helping her?  It doesn’t help her.  In fact, by thinking of Emma as moderate or severe or mild she is being limited.  If someone who is thought of as “high” functioning then can’t cope in a crowded place with fluorescent lighting and begins shouting and flailing about, the common thought is, well he could control himself, but is choosing not to.  Just as a “severely” Autistic person is an inspiration and miracle when they are able to express themselves and communicate their thoughts to those who had slapped a low IQ on their charts.  These ratings become the method by which a human being is seen as non-human or less human.

In my enthusiasm I wrote to my friend, Ib last night.

Me:  I think I finally understand what you and others have meant about characterizing autism in terms of mild, severe etc I suddenly had a brain flash and I think I understand why.

Ib:  Oh thank heavens 😀

Ib reminded me that the scaling system is ineffective as a descriptive device as children grow, progress and become adults where they continue to grow, evolve and progress.  I thought of Peyton finally finding a way to communicate in her early twenties.

Ib said, “You wouldn’t grade me now as you would grade teenager me the level doesn’t stay we grow, like anyone else.  I remember things that is why I can suggest to you what Emma may mean with levels-thinking, you may never have seen me as a resource because “Ib is not like my Em” but you see that I am.”

Ib is right.  She is my friend, first and foremost, but she is also someone I rely on to help me understand.  Because there is so much that I don’t.  But with help I can.

I would love to hear from anyone who cares to chime in here.   If I’ve been disrespectful, please let me know.  I think I’m getting it, finally, but I want to hear from all of you.  I need to understand this.  For my daughter’s sake, I have to understand and she can’t explain it to me…  yet.

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Laura Nagle – Paving the Way

Posted on July 16, 2012 by | 11 comments

The following was a “comment” sent to me by Laura Nagle, who is the star of the wonderful, powerful and not to be missed documentary:  Vectors of Autism: Laura Nagle.  I couldn’t just include it in the comments section, you will see why.  So I asked and received Laura’s permission to publish it here as a post on its own.

Laura Nagle writes:
“I self diagnosed with Asperger’s Syndrome several years ago. I told my sister, who told our father who confirmed my suspicions with recollection of my official autism diagnosis long ago, before the flood. I soon learned of a local chapter of the Autism Society of America, meeting in Flagstaff. I went there. Walking into that first meeting was a large and difficult step. I am so glad that I summoned the courage.

You see, I have always been autistic. I have always been a misfit in the world. I have had all the typical autism issues, but without having any answers as to why. I have paid my bills, but otherwise have wandered aimless upon the earth. I have lived in crushing financial poverty, as do far too many of us. I have found a form of poverty so much worse than that of mere money; and have lived this soul poverty most of my life.

You see, I have had nothing to give. I have been so deep in money trouble that I have not been able to give to charity. By the end of a day’s work in the real and generally entee world I am exhausted, and melted,  and depressed, and not capable of any optional accomplishments. And I have lacked any special worth or skill or talents. What can a poor, fatigued, worthless loner give to anyone. Nothing. Nothing at all. That is the desolation that I have endured. . .

. . . Until my walking into the meeting of the Northern Arizona chapter, ASA. I must note, and strongly, that my life did not change at that moment. That would be to assume that I had a life prior to the ASA chapter and the people I met there. I did not have a life, I had a rude existence. My life began at that moment.

I found the ASA and was found by them as well. It turns out that all that I learned during those harsh years is of value to others. It happens that I have an essential talent of putting an esoteric condition and its personal reality into words understandable by persons who will never experience it. This talent is a gift, I cannot take credit for it, but I will use it as well and as often as I can.

I am motivated. As I scan the decades of my life I see so many ”autistic moments” in which I adjusted my life’s trajectory downward. I see so many moments in which things might have turned out better for me if only I. . . If only someone near me had known the whats and hows of autism. They did not. I want new ones of my Spectrumite Tribe to excel! I want them to do far better than have I! I want them to exceed me in every way.

And I have the chance to do this! These wonderful people around me, people of ASA, people of TASH, these people have given me purpose and friendship and thus life itself – on a silver platter! I have gone so long in a drought! I have people and purpose! The drought is broken, and I am blessed beyond my wildest dreams, and I so deeply appreciate it all!

Without the ever growing people I cannot fulfill my purpose. I need people to dream with me and also for support and guidance. I need those people who listen to my message and apply these concepts in real life and so insure that new auties shall exceed me and my success! People and purpose. I would never have dreamed of this. I have thanks that would take several lives to give.

And I would like to offer those thanks here! Thanks big and wide to the ”Vectors of Autism” team, to my ASA and TASH friends and to all who watch our film and are moved by it. Special thanks go to John, our director, who insisted on making this film more than a documentary. Thanks to our cameraman, Matt who lent his vision – literally! And most of all, thanks to Susan, producer of this film, and of my life!

Dang I am lucky!”

*I believe, but I haven’t verified this with Laura, that when she writes “entee” she is referring to NT (neurotypical).

I was going to title this post “Laura Nagle – Paving the Way For Emma” because Laura is, but it isn’t just Emma who profits from her words and this documentary.  The more Autistics are given a platform from which they can speak out, discuss their experience of the world, the better this world will be for all of us, not just our children, but for every single child and every human being on this earth.

Thank you Laura for writing this.  Thank you for being who you are.  And thank you Leah Kelley of Thirty Days of Autism for introducing me to Laura.

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Vectors Of Autism: Laura Nagle

Posted on July 12, 2012 by | 13 comments

Vectors of Autism: Laura Nagle   For those of you who have not yet viewed this powerful documentary, you must.  I cannot urge you enough.  Just do it.  Watch it.  Keep a box of tissue nearby, because if you’re like me, you’ll need it.  I wept throughout the entire film, from joy, from sadness, from relief that such a film has finally been made, from pain that we have so far to go in educating ourselves, the public, the media about autism and what it means to be autistic.  At one point Laura laughs and says, “I figure I was built out of reworked parts.”  It is a poignant example of both her sense of humor, but also how society’s view of her has weighed heavily.

Anything I say about this documentary is inadequate.  So I’m going to give you a couple of fun facts while you click on that link above and purchase the DVD.  I know, it’s $35.00 but think of it as an investment in your child’s future and to the future of this film.  The more people who buy it, the more likely it will make it to film festivals, and to the larger public where this message needs to be seen more than ever.

Laura Nagle wrote the lyrics to the theme song and plays the harmonica on it, she’s also an architect, an artist and Autistic.  It’s hauntingly beautiful, which is kind of perfect because so is she and so is the documentary about her.  The couple in the documentary with two little girls on the spectrum, Jennifer Turrell and Stewart Anderson wrote the music.

*Addendum – I was so tired when I wrote this post late last night, I just didn’t have the energy to write more.  But I need to add, this documentary is everything I and others like me have been saying.  It is imperative Autistics speak out about their experiences and it is vital that we, in the neuromajority, listen.  For those of you who are still uncertain as to why I say this, it is because I know I am not the only parent of an autistic child who went through a hellish period (far too many years) in which I struggled with my daughter’s diagnosis and what that meant to her and to us as her family.  I tried my best to understand, I did what I could with the knowledge I had available to me, but even so, I fell short.  I cannot help but wonder, had I heard Laura Nagle and others speak of their experience, would I have done things differently?  Would my stress and fears have been abated even if only by a little?  Would I have sought the opinions of all those specialists with such tenacity and fervor?  Would I have been able to set aside some of my fears in favor of a more rational and calmer mindset?  And most importantly, would any of this have effected Emma?  I think it would have.  I hope others can learn from some of my mistakes.  I hope that by writing about my journey, others who are closer to the beginning of theirs can avoid some of the traps I so easily and readily fell into.

What I know now is that having operated with a stress level hovering in the red for so many years, I am relieved to see this documentary.  I am grateful to have friends who are autistic and whose lives, opinions and experiences help pave the way for my daughter.  The question is – how do we go about making these kinds of connections available to other families?  Families who do not have blogs, who do not know where to go to find Autistic adults who are interested in speaking to them and sharing their experiences with them.

One of the reasons 12-step programs work as well as they do, is because they provide a model for living through mentorship.  The role of the addict who has cobbled together some time as a sober and abstinent being, who then goes on to offer support to other addicts with less experience and who may be still struggling with their addictions is a powerful model for any community.  A huge component of 12-step programs is the idea of being of service.  Without being of service to a fellow addict we will almost certainly lose our way.  But this idea, this model can be translated to include any community.   Within the autism community, for those self-appointed Autistics who have a desire to extend their hand to families with autistic children, it is a vital lifeline, one that everyone involved can profit from.

If you’re still undecided here’s a preview video:

After you have watched it, I want to hear your thoughts.  What did you think?  What did you learn?  What surprised you?  What made you cry?  What made you laugh?  Laura is very funny, so that one is probably easy!  Laura has not just started a conversation, she is extending her hand.  It is up to us to grab it.

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