Tag Archives: Neurodiversity

Pathologizing Autism? Let’s Discuss.

Posted on June 16, 2014 by | 30 comments

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

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

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

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

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

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

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

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

DSM5

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Posted in Autism, Autistic Blogs, Autistic Role Models

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What We Would Have Done Differently

Posted on February 27, 2014 by | 40 comments

What We Would Have Done Differently Had We Known What We Know Now is the longer version of the above title for this post.

Someone left a comment on a post I wrote about a year and a half ago – Want to Know About Autism?  Ask An Autistic.  In the comment they asked a number of questions and because they are questions others have also asked, I’m writing a post devoted solely to answering them.

“What would you have done with Emma if you had not fought your seven year war? How would you have spent that time with her knowing what you know now? What do you think would have been of most benefit to Emma when she was still too young to type? How would you have gone about learning assuming competence?”

“What would you have done with Emma if you had not fought your seven year war?”

The “seven-year war” they are referring to is one I describe in that post detailing all the things I did upon receiving my daughter’s diagnosis.  To contemplate what we would have done differently had we known what we know now is both exhilarating and painful, but I’m going to give it my best shot…

The short answer is – we would have done everything differently.  The longer answer is vast, so vast I don’t know that I can do it justice in just a few paragraphs, but I will try…

Once we were given her diagnosis I would not have done any of the therapies suggested other than occupational therapy.  I know this will strike many as radical, even negligent, but I am speaking very specifically about my daughter.  Right from the beginning, knowing what I know now, would have changed all of my thinking, reactions and response to my daughter.  All those years spent trying to “help” her were years marked by fear, distress and worry.

I know now how sensitive Emma is to other people’s emotions, how she picks up on all of that easily and how distressing it can be for her.  So there are things I would have done that actually have nothing to do with Emma, but that would have helped me be a better parent to her.  Reducing my fear and constant worry would have been helpful to all of us.  In order to do that I would have had to ignore pretty much everything I was being told about autism and what that meant for my child.  The information we were given in 2004, the year Emma was diagnosed, was presented as fact.  And, as it turns out, it was incorrect.  I cannot think of a single thing we were told that did not prove later to be wrong.  Think about that for a second…  Every single thing we were told was incorrect.  Everything.  (Richard, correct me if I’m mistaken about this.)

A quick aside –  this is where, the way our society is structured has done none of us any favors.  If we lived in a truly inclusive society where autism was not denigrated, but was considered just another neurology, no better or worse than non-autistic neurology, where there was no judgement placed on either neurology, but more was treated as fact, where everyone came into contact with both neurologies on any given day in a variety of settings, “autism” would not be viewed with the fear and worry and even terror that it currently is.  When I say “inclusive” I am using that word literally and not code for “tolerating” or “understanding” or even “accepting.”  I mean a society where all neurologies are treated equal, without comparison of one, which is thought to be superior, to another considered inferior.  An inclusive society would mean “accommodations” would be embedded into our daily lives seamlessly and without fanfare, just as the many accommodations non-autistic people enjoy without even noticing them, do.

I would not have sought out the advice of the slew of doctors and specialists we carted her off to.  I would have surrounded her with music, singing, dancing, lots and lots of movement, gymnastics, swimming, trampolines, trapeze, art, literature, poetry (much of this we actually did do.)  Had Soma begun her center at the time of Emma’s diagnosis, I would have begun learning RPM and implemented Soma‘s suggestions for very young children right away.   Beginning with isolating the index finger to point independently and moving on to presenting written choices, for everything and anything – “do you want some M-I-L-K or do you prefer J-U-I-C-E?”  Writing each letter, while saying the letters out loud as I did so.  Encouraging her to point to the two choices I wrote.

There were many things, looking back, that we did right, things we did for both our children, such as getting her on skis when she was just three years old, horseback riding, lots of hiking, carrying her in a back pack, Emma loved being carried in a Kelty pack so she was able to view the world at the same height as me.  We took the children to the theatre, puppet shows, kids concerts, and traveled on airplanes when they were both babies.  I began brushing their teeth the minute that first tooth came in, I cannot tell you how grateful I am that I did that.  I began flossing their teeth the instant a neighboring tooth appeared.  I read to the children and provided both of them with lots and lots of books.  We exposed our children to art and literature; these are all things I would not have changed.

“How would you have gone about learning assuming competence?”

Presuming competence is ongoing.  It’s a practice, a mind set and it requires a leap of faith.  Or at least this is how I have come to view it.  Presuming competence is less about an idea and more about doing.  It’s an action, one I must be constantly mindful of and vigilant about doing moment to moment.  My past thinking is so ingrained, changing that thinking is something I must work hard at all the time.  First I must become aware that I have ingrained thinking that is not presuming in my child’s competence, second, I must accept that my ingrained thinking is unhelpful and hurts my child, and third slowly, slowly work to do, and  think about, things differently.

I’ve written about presuming competence ‘here‘, ‘here‘, ‘here‘ and ‘here,’ but I will just add that this is very much something I continually struggle to do better.  To peel back the layers and layers of misinformation and assumptions that get in the way of being completely present in a way that is nonjudgmental and most helpful to my daughter so that she can flourish is not easy, but it is the single best thing I have strived to do.  It requires actively ignoring the more common thinking about autism and what that neurology means.  It means actively questioning everything I am told by people who present themselves as experts.  It means listening, really listening to my daughter.  It means sitting with the discomfort that I have done so much of this wrong.  It means forgiving myself for my mistakes.  This is the path I find myself on at present.

And truthfully it is Emma who is leading the way, my job is to follow, listen, learn and cheer her on.

Emma ~ January 29th, 2014

Emma ~ January 29th, 2014

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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

6a01053624b365970c0120a5b6a7b5970b-800wi

 

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Posted in Autism, Autistic Role Models, neurodiversity

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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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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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Autism = A Human Rights Issue

Posted on August 23, 2012 by | 53 comments

Sometimes I read something and I am completely overwhelmed by the weight and content of the words.  Yesterday I read this – written by Kate.  It’s entitled Scarred.   It was posted on The Thinking Person’s Guide to Autism.  I am including just the first few sentences.  Please click on the link to read it in it’s entirety.  This piece needs to be read – by every parent, every school, every “specialist,” every researcher, everyone and anyone who every comes into contact with anyone, ever, on the spectrum.

“Scarred

Kate

We are scarred, we adults on the spectrum.

We are scarred, both inside and out.

Our lives are twisted paths littered with diagnoses. We have fought for years to get to where we are now, and still it isn’t good enough. 

We are scarred.” 

Autism is a human rights issue.  We must begin thinking of it this way.  We are condemning a group of people, treating them worse than we treat convicted felons, murderers, rapists, psychopaths.  We must stop.  We must stop the way we think about Autism.  We must stop the way we think of Autistics.  We must stop oversimplifying, we must stop applying our Neurotypical thought processes to Autistic people.  We must stop with our assumptions.  And the only way we are going to stop is by LISTENING!  We must, every single one of us, listen to those on the spectrum who are communicating and we must put aside our “but my child can’t talk, therefore this person isn’t like my child” or “this person must be high functioning and therefore doesn’t know what it’s like for me and my child” or “my child is in diapers and is nonverbal and therefore this other Autistic person has nothing of any importance to say to me”  or “I can’t hear this person, they’re too angry.”

We must stop speaking for Autistics.  We must stop arguing about semantics.  We must stop and hear the pain our misinformation and misperceptions are causing.  We must stop and listen.  Listen to what we, as a society, are doing.  Listen to what Kate and so many others are saying.  A group of people are being abused, shamed, yelled at, blamed, talked about, treated with contempt by schools, specialists, doctors, teachers, organizations carrying the word “autism” in it’s name, parents, siblings, cousins, society, the world.  We are arguing over wording.  We are bristling at the word Neurodiversity, we are shouting at one another, but shouldn’t we start listening to those who we are all supposedly wanting to help?  Isn’t it condescending of us to pretend to care about autism and yet make excuses as to why what so many of them are saying shouldn’t be listened to?  I hear people say, well that person is too angry, therefore, what?  Therefore their voice is invalid?  Really? Do we really believe that when  someone is saying something we agree with and want to hear?  Isn’t it that we don’t like it when someone is saying something that goes against what we think or believe?

Can we all try harder to look at what we’re doing when we try to silence those who are speaking out.  Do you think so many would be so angry if they felt they were being heard, that what they had to say was having an impact?  Hasn’t every movement had voices of anger as well as those who tried to be civil?   Don’t we need both?  Do you think they would be shouting if they didn’t feel ignored, condemned, brutalized?  Many Autistics are angry?  Yes.  Why wouldn’t they be?

Autism is a human rights issue that has been sadly overlooked.  That has to change.

It must.

I know, I know.  I just went on a rant.  I’m taking a deep breath…  

Autism can look like this… (2002)

and like this… (2003)

and this… (2004)

and this, too… (2012)

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“You Have To See The Horror, But Not Be Defeated By It.”

Posted on May 22, 2012 by | 12 comments

Yesterday I had lunch with the inspirational and brilliant James Cone, also known as the “father” of black theology, and a professor at Union Theological Seminary. For those of you who aren’t familiar with James and his work, he is the man who wrote the powerful book, The Cross and the Lynching Tree.  Sometimes in life you meet people, people who are special, for whatever reason, they reach us in ways that most people do not.  James is one of those people in my life.

Over lunch, as we got on the topic of various movements:  the civil rights movement, the disabilities movement, the LGBT (Lesbian, Gay, Bisexual, Transgender) movement, he said, “You cannot let your circumstances define you, who you are, your race, your gender or what others say about you.”  And I thought about Emma and how autism is perceived by many as a tragedy.  I thought about how I don’t ever want her to define herself by the way some may see her.  I thought about how that perception does damage to so many, how the way we perceive people is how we justify our treatment of them, how we treat them differently without even realizing it.  I thought about how I want to protect Emma from that.

I thought about the neurodiversity movement and how so many Autists are speaking out, asking for acceptance, asking for respect, asking to just be heard.  I thought about all those Autists who cannot speak, who are non-verbal and cannot communicate their thoughts, ideas and opinions at all.  I thought of those who are called “severely Autistic” and I thought of those who are, at this moment, in institutions or group homes run by people who may not understand them.  People who will use their ideas and perceptions of who they think they are to treat them in ways that will hurt them.  Who fights for them?  Who ensures their rights are respected and considered?   As I thought about all of this, I felt myself falling into despair.  And then James reached over and took my hand.  He said, “You have to see the horror, but not be defeated by it.”

I thought about all the stories I’ve read of Autistics who have been abused, often by their own family members, caregivers, or in homes where they were placed.  The people who cannot fight back because they do not have words.  The people who cannot fight back because even by communicating through other devices they are viewed as less than and so their words are disregarded.  I thought of those who have risen up and despite their challenges are blogging about their experiences.  I thought of the unimaginable horrors they have endured.  “You have to see the horror, but not be defeated by it.”

Those people have lived the horror, the rest of us are only witnesses to and only if we choose to be.  And that is a critical and striking difference.  We have a choice.  We can turn away if we choose.  We do not have to read their stories.  We do not have their memories etched into our brains, their experiences scarring our bodies.  We will not get triggered by those who behave in similar ways to the perpetrators of their abuse.  “You have to see the horror, but not be defeated by it.”

One blog I read not long ago, described in graphic, terrifying detail the abuse she was subjected to at the hands of her stepfather, mother, siblings and cousins.  As I read her post, I thought, this isn’t abuse, this is torture.   I felt nauseous reading her blog.   When I wanted to click the little red button on the top left corner of the page to delete it forever, I had to remind myself that this is her life, the least I could do was read what she’d written.  How do you take what you’ve read and continue living your life as you had been, before you knew what you now know?

“You have to see the horror, but not be defeated by it.”

And I know.  I know I have to keep writing about all of this.  I have to keep reading the stories, they aren’t going to disappear just because I’ve made the choice not to read them.

“Strive toward an ideal,” James said at one point.  He paused and then he said, “Write where the hurt is most.”

And so I will.  I will try.  It’s the least I can do.

Emma in one of her “pretty summer dresses.”

Read My Fear Toolkit published in the Huffington Post

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Parenting and The Depiction of Autism in the Media

Posted on May 17, 2012 by | 13 comments

We are inundated with disturbing imagery regarding autism in the media.  Perhaps one of the most famous is a video Autism Speaks made.  It is a video montage with a number of parents speaking of their distress and the difficulties they face while raising an autistic child.  Their children are almost always present as the parents speak.  The camera cuts to these same children in full meltdown, stimming or sitting alone in a playground in stark contrast to their neurotypical peers who are running around shouting and laughing, while playing with one another.  At one point a parent discusses how, for a brief moment she allowed herself the fantasy of driving off the George Washington Bridge with her autistic child.

The video is disturbing on many, many levels.  I’m sure it was successful in raising a great deal of money.  However, as someone who once viewed images such as these through the lens of ignorance and as a result was paralyzed with the fear these images induced, I am aware of the underlying emotional manipulation that is so obviously being employed.   It is propaganda, whether intentional or not, biased, deeply prejudiced and intended to create fear.  And it is doing tremendous damage to Autists.  These types of imagery perpetuate the marginalization and unfortunate stereotyping of people on the spectrum.  In using the images of Autistic children it negates and ignores the effect these depictions have on those same children in ten or fifteen years from now, when they grow up to be autistic adults.  Sadly it is not just Autism Speaks who is engaged in this kind of negativity and bias.  News programs routinely air shows about “savants” who are seen as fascinating curiosities or programs about the tragedy and horrors of autism, citing statistics and the growing numbers, with shrinking resources etc.  How did we get here?  What happened to ethics in journalism?  What happened to the idea that journalists have a moral responsibility?

For those who do not have an autistic person in their life or have never met one, these images are the only things you have to base your perceptions on.  Just as when I was first told Emma was autistic, my mind grabbed onto the image of Dustin Hoffman rocking back and forth while muttering in his role as Raymond Babbitt in the movie Rainman.  Raymond Babbitt and Emma are as dissimilar to each other as I am to Raymond Babbitt.  But at the time of Emma’s diagnosis I knew of no other autistic person, so this was who I immediately thought of and then felt confused as to how my daughter could possibly be autistic.  Many years later, when I met Temple Grandin at a lecture she gave, I again found myself looking for similarities.  There were very few.

Over the years there have been countless news programs showing autistic children, teens and adults and while some of the people depicted share one or two behavioral similarities to Emma, I have yet to see any, where I think – Oh, that’s what Emma will certainly be like in 15 or 20 years.  Comparing Emma to adults on the spectrum is something I have been doing for years without realizing it. This is not something I do with my son Nic.  In fact it never occurs to me to compare him to adults.  I know and trust that Nic will continue to mature and grow up to be the responsible, kind, thoughtful, intelligent human being that he is already showing himself to be.  Why do I not do this with my daughter?   Clearly this is where my work lies.  It’s a double standard that I hold, one for my neurotypical son and another for my autistic daughter.  Here is where using the word neuromajority really is appropriate and more accurate.  Nic is in the neuromajority and therefore I understand and assume things about his future that I cannot know any more than I can predict my daughter’s.  But because he is in the neuromajority I am able to lull myself into a calm state of thinking that I know, or feel that the chances are at least better than good that he will grow to be the person I can see him becoming now.

With Emma, her future, in my mind, remains a giant question mark and so I can fall easily into fearful thinking.  The one thing, the single most important thing that is making an enormous difference in my thinking regarding my daughter, is communicating with Autistic adults.  There are a number of them that I particularly like and admire, that I reach out to and who are kind enough to take the time out of their busy lives to communicate with me.  I do not assume Emma will grow up to be just like any one of them, but in communicating with them I am given tremendous hope because unlike the media coverage of autism and autistic people, they do not live their lives from one dramatic sound bite to another.  They are complicated, interesting, intelligent people working, studying and living their lives.

As a result the frightening portrayals the media seems so enamored with are softened, I am able to be logical in my thinking when confronted with those images and now even choose to avoid those programs.  I do not need these depictions to compete with the very real autistic person in my life who struggles, yes, but who also progresses, who is funny and happy, smart and kind and loving, sensitive and unique, who will continue to grow and mature to become a young woman with all of those qualities and more.   If there is one thing I can cite, which has changed how I think more than anything else, it is in being in contact with these kind strangers who are autistic.  I’ve written about this before, and I will continue to write about this, because it is the thing that has changed everything that I believe and has opened my mind to the very real infinite possibilities that exist and has given me hope.  I fall easily into fearful thinking, but I was capable of that long before my autistic daughter came into my life.

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Posted in Autism, neurodiversity, neuromajority, Parenting

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A Fantasy for Parents of Newly Diagnosed Autistic Children

Posted on May 11, 2012 by | 11 comments

I wrote about some of these ideas before in the Fantasy For Autists post a couple of weeks ago.  This is a follow up post, a fantasy for parents of newly diagnosed autistic children.

When Emma was first diagnosed I felt fear more than any other emotion.  It was overwhelming and crushing.  The word “autism” carried with it a weighty sense of doom.  People have described it as akin to receiving a “life sentence,” it was a word I knew almost nothing about, and what I did know wasn’t good. “We don’t know what causes it,” “There is no cure” were the words we were told many, many times by the various specialists we went to, seeking help for our beautiful, happy, fiercely independent daughter.  Those words were said matter-of-factly, but the grim set of the lips by those who spoke those words belied the truth, it seemed.  Some specialists would follow those words with a sad shake of their head, often done while uttering, “I’m sorry”  as they ushered us out of their office.  The doctor’s appointment now over, we were left standing alone, confused, terrified and overwhelmed by what we could not understand, by what could not be explained, by what seemed like a dark cloud enveloping every aspect of our lives.

Then there were the depictions in the media of the devastated families struggling to make ends meet, the scary images of the perseverative, stimming children in full meltdown, family members run ragged, siblings, silent and resentful, spouses angry and argumentative, and the autistic child, always somewhere in the background, seemingly oblivious to all the chaos they supposedly had created within, what would otherwise have been, the perfect American family, had they not been born.  While this may help with fund raising by preying on people’s fears and pity for those less fortunate than themselves, it is these depictions that the newly diagnosed child and her family will see.

Can we take a moment and consider how these depictions make the newly diagnosed child feel?  What message is being sent?  This child that everyone is so sure isn’t picking up on any of this, but perhaps is.  What if that child understands a great deal, even at the young age of a year and a half ?  What if that child is extremely intelligent and feels the overwhelming sadness their very existence seems to be causing their family?  What if these feelings are then intensified by the things that are said between family members in front of the child or within hearing distance of the child?  How would this affect the CHILD?  Think if you grew up feeling you were a mistake, damaged and broken?  What if the words that were used about you and to you were said with anger, exasperation and annoyance?  What if instead of being given the help you so desperately needed, you were told that the things that helped you concentrate and focus were wrong?  What if you were told almost everything you did was wrong?  Would that help you do things differently?

These negative images are also what will flash through the minds of the parents as they are given the “dreaded” diagnosis.  Listen to any newscast about autism.  The way the news anchors say the word – “autism” – the voice lowers, there is often a hesitation before the word is spoken.  Look at the statistics, the alarming statistics that cause everyone to feel frightened, because we know so little, so we fall into fear, fear of the unknown, fear of what might be, fear of the future, fear of the present, fear.  Is all of that fear helping any of us?  Does fear help us as parents do a better job parenting our autistic children?  Does the fear give you patience, does it help you when your child is unable to express themselves and so acts out?  Does that fear make any of us behave better, more appropriately?  Does the rampant fear help us sleep at night?  How’s all that fear working out for you?  Does it help?  And if you think it does, I’d love to know, how?

But what if this was not the way families were introduced to autism?  What if instead of sitting with the sympathetic, yet professionally aloof specialist the family was introduced to a group of self appointed adults, all of whom were autistic. What if these adults were verbal and nonverbal, women and men, spanning a wide range of ages?  What if each Autist “spoke,” whether through language or by typing or through a voice activated device?  What if the families were able to ask questions and were allowed to approach these Autists and even were able to have one or two or more assigned to them, the way a social worker is now, during Early Intervention?  What if those Autists were available to the family and their autistic child?  What if these were the people the family could turn to when they had questions, needed help finding resources, schools, methodologies or just wanted to check in with someone who might understand their child better than any pediatrician, psychologist, developmental pediatrician or neurologist could?

What if each Autist was given an opportunity to discuss what it was like for them growing up, the things that helped, the things that didn’t?  What if those Autists discussed how to teach life skills?  What if each family went away from this initial “welcoming” meeting with a folder that included a handbook written by Autists, a list of resources of Autistic doctors, neurologists, pediatricians, Autistic run schools with curriculum approved by Autists and others designed by Autists, and a list of  some of the essential things parents need to know and remember as they help their autistic child live and thrive?   What if, instead of being bombarded with frightening stories of self injurious nonverbal children we were shown videos of nonverbal Autists helping those children learn how to cope?  What if we were shown videos and news programs about all the Autistic adults who are pursuing their passions?   What if there were Autistic lawyers, neurologists, accountants, pediatricians, veterinarians, Occupational Therapists, Speech Therapists, Teachers, Educators, Head Masters, scientists, musicians, singers, performers, painters, writers, that we were all exposed to and knew about?  How would this change how we viewed our own children?  What if we were given the support we needed to help our children reach their potential without sadness, fear and pity?  What if?

My wish for Mother’s Day is that one day this will no longer be a far-fetched fantasy, but will be a reality.

To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here‘

And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.

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Autism and the Neuromajority

Posted on May 8, 2012 by | 8 comments

I am wading into murky waters with this post.  I know this, but I’m going to do it anyway…

I really dislike the word “neurotypical.”  It’s one of those words that has always bothered me because, in my opinion, it doesn’t really mean what it’s meant to mean.  Neurotypical is the word coined by many in the neurodiversity movement, (a word I like – neurodiversity – by the way, kind of like biodiversity, there’s no pejorative, underlying meaning) because it does mean what it’s meant to.  But I don’t think neurotypical goes far enough.  I understand that it was created as an upgrade and improvement from the word “normal” (a word which really, really bothers me.)  The word normal being completely subjective and arguably something none of us could really say we are if anyone is being brutally honest.  But neurotypical, while certainly preferable to “normal” just doesn’t do it for me.

Last weekend, Richard and I were talking about autism, and I said, “the neuromajority…”  Richard said, “I like that, neuromajority.  That’s good.”  Yup, these are the kinds of conversations we often have with each other…  He agreed with me that he didn’t like the word neurotypical either.   The word “typical” has a slightly positive spin to it, kind of like a private club.  Having always been unconventional (and proud of it) I’m not a big believer or fan of clubs, never have been.  The word neurotypical is also vague, open to interpretation, completely subjective and ultimately confusing.  I don’t like that.  So I started using the word neuromajority.  It doesn’t roll off the tongue as easily as neurotypical, but at least it is more accurate in that it means what it’s meant to mean.  Neuromajority – It is the neurological state the majority of humans have, neither good nor bad.

Flushed with pride in having come up with such a brilliant new word, a word I felt I alone had coined, it hadn’t occurred to me that others may have already used this word.  Until I began writing this post.  As I was writing, right around the end of the last paragraph, I suddenly thought – I should Google – neuromajority – and see if anything comes up.  There were three instances of neuromajority being used, one of them was a comment left on an interview with Temple Grandin for 60 minutes.  The commenter wrote:  “Like most of the neuro-majority you reached beyond her statement and arrived at the conclusion this means she’s faking her eye contact” and the other was from a blogger with the blog – 1uppitywoman where she writes:  “Asperger’s has complicated life for me only so far as the neuromajority bristles at people like myself because we’re different from them.”  The last was another comment left on the blog AspieWeb.  So I went from feeling pleased with myself for my tiny stroke of brilliance in having come up with a word I prefer to use in describing myself and others like me, to the humility of realizing I had NOT come up with this word all on my own, to indignation that only three sites came up where the word was used.  My thinking is, since it’s been used, then why hasn’t it taken off and been used by a great many?  After all it’s a really good word, isn’t it? (!)

So I’m putting it out there – does anyone else dislike the word “neurotypical?”  Is there a better word we can use?  What does everyone else think?  Or is all of this way too political and therefore weighty and fraught with unseen implications that I’ve missed?

Tomorrow’s post will be about Emma’s new name for her dad.

For my latest piece in the Huffington Post, click ‘here‘.

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Imagine What it is Like to be Autistic

Posted on May 3, 2012 by | Leave a comment

The last 72 hours has seen a whirlwind of activity regarding the Autism Positivity 2012 Flash Blog and those words “I wish I didn’t have Aspergers.”  It has been incredible to witness.  To recap  –  A group of bloggers devoted days of their time and energy to come up with and create the Autism Positivity Flash Blog.  They then reached out to all the bloggers they knew, asking for each to contribute something.  New contributions were posted every 15 minutes on the last day of April, with more trickling in after that. I don’t know what the total ended up being, but it was well over 115 contributions.  As a result of their efforts, a whole community of Autistics, Aspergers, Parents of Autistics and Parents of Aspergers were galvanized and inspired to come together in support of any Autist who has ever felt – marginalized, less than, misunderstood, ignored or alone – even if for only a minute.  It was an incredible show of strength in numbers, of people working together, of a diverse and vibrant community uniting and reaching out to another (anonymous) human being.

Yesterday, Genisa, the person who typed those words commented on the piece I’d submitted to Huffington Post.   Because the Huffington Post limits comments to 250 words, you have to break your comment down into segments and submit each segment, hoping they’ll be published in the order you submitted.  As both Genisa and I found out, this was not what actually occurred.  HuffPo moderates all comments that come in and because of the massive numbers of comments they are (I’m sure) quickly overwhelmed with content they cannot keep up with.  So Part 2 of my 3-part response was never published at all, and part 5 of Genisa’s comment wasn’t either.  It was incredibly frustrating and I felt somewhat horrified when I realized that people were going to read just the last part of a very personal comment and one which made me feel incredibly vulnerable to misinterpretation that I’d written in response to Genisa’s.  About four hours later the first part of my comment was eventually published, which still did little to mitigate my frustration.  (Someone on Facebook suggested those lost comments end up with all those random single socks that somehow never make it into the light of day between the washing machine and dryer.  I kind of love that!)

Genisa wrote in frustration – “I am noticing a pattern here. They are only posting the first and last of cont. posting. I had to post 6 posts to get all of what I wanted to say out. How can anyone understand what I said if all they post is the beginning and end of what I was trying to say? It is leaving out all of the details, the important stuff. This is how it is every day living with Aspergers. I tend to not ever get the whole message people try to tell me, because I am so focused on the details. But when most of it is left out, I just don’t get any of it.”

“This is how it is every day living with Aspergers.”  The analogy being drawn between the frustration of not fully getting everything someone is saying, whole chunks of  what is being said are erased, and trying to make sense of it all anyway, while being expected to respond was so powerful to me.  I thought –  What if it was this way when you tried to express yourself as well?  What if you had a whole idea, something you wanted to relate to another person, but then had to submit it (say it) in short segments, yet it came out scrambled and not in the right order with some of what you wanted to say not coming out at all?  What if this was your constant experience in attempting to communicate with others?  Imagine if every time you had a conversation with someone this was your experience in both receiving information and giving?  Imagine how incredibly frustrating that would be.  Imagine if this happened not once, when you could shrug it off knowing that it was a one time annoyance and while irritating not an ongoing problem, but each and every time you spoke.  Imagine that your experience of communicating was to have people routinely misunderstand you or respond to the last part of what you’d said without hearing or understanding the first part.  Imagine if when people spoke to you, you lost portions of what they were saying.  Imagine what it would be like to ask them to repeat themselves and have them lose their patience with you.  Imagine if you were scolded, ridiculed, called names and punished for not giving an appropriate response.  Just imagine how that would make you feel.

Can you imagine?

For my latest piece in the Huffington Post, click ‘here‘
 Anyone can contribute!  To be a part of the change, contribute to the Autism Positivity Blog click ‘here‘

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