Tag Archives: Autism Speaks

Autism, Acceptance And Love

My friend Shannon Des Roches Rosa posted a great piece regarding understanding acceptance on Thinking Person’s Guide to Autism the other day. I wanted to write a comment, but had to think about what she’d written and then wrote a long, epic length, rambling comment, so lengthy that when I went to submit it I was informed I’d “timed out” and lost the whole thing.  But it got me thinking…

Whenever I think of acceptance the “serenity prayer” comes to mind – “…grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.”  This prayer was what I repeated to myself each and every day for years after we were given Emma’s diagnosis.  “Courage to change the things I can” was what I clung to as I doggedly pursued treatment after unproven treatment.  One of the single biggest stumbling blocks for me in accepting my daughter’s “autism” (I write it this way, because this was how I thought of it, as something separate from her) was that I believed it was within my power to change her autism.  I thought I could remove it.   As long as I continued to hold onto that belief, I couldn’t accept her autism or the idea of her as an Autistic individual, she was Emma who was diagnosed with autism and therefore, my thinking went, could also be diagnosed withOUT autism.  These two points were key in my thinking.  Anyone who suggested I not think of my daughter and autism in this way were disregarded.

I no longer think in these terms.  But I read the often heated exchanges between parents who accept autism and their Autistic children, and those who maintain they accept their child, but do not accept autism.   Interchange the word “accept” for “love” and things start getting really volatile.  None of us welcome anyone who suggests we do not love our children.  And truthfully, this is where, I think, the disconnect happens.  I think this is less about love and more about having a different understanding of what Autism is.  If autism is seen as completely negative, (something Autism Speaks has perfected to a science by using words such as, affliction, epidemic, crisis and tragedy) this horrible thing that causes my child to writhe in agony, an “affliction” with no redeeming qualities, coupled with the belief that autism is something that can be removed, in fact has been removed by many parents who have gone on to write memoirs about their triumphant courage to change the things they can, then what parent wouldn’t welcome their child relief from that?

But if Autism is seen as something complex, woven into the very fabric of a human’s being with a wide range of attributes as well as challenges, all of this becomes far more complicated.  It was this idea, so beautifully described in eloquent detail by Julia Bascom in her blog Just Stimming that made me pause.  Her description of the challenges and joys of being Autistic were what made me stop and reconsider everything I thought I knew and believed.  As long as we hold to the view that our child is locked inside a seemingly impenetrable shell called “autism” while listening to that seductive, whispering voice assuring us that we can break through that shell if we just try x, y, and z we will struggle mightily with the idea of acceptance.

Emma – 2002

The Latest From Autism Speaks

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


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.

At What Point Do Our Actions Constitute Torture?

The New York Times published an OpEd piece yesterday by Bill Lichtenstein about the use of restraints and seclusion rooms for children with special needs in schools.  Please read by clicking ‘here‘.   Bill Lichtenstein writes, “According to national Department of Education data, most of the nearly 40,000 students who were restrained or isolated in seclusion rooms during the 2009-10 school year had learning, behavioral, physical or developmental needs, even though students with those issues represented just 12 percent of the student population.”

When we speak of a group of people as less than, when we view them through the lens of deficiency, we begin paving the way for the kind of abuse shown in this footage at the Judge Rotenberg Center.

The Judge Rotenberg Center is still operating despite lawsuits, protests and outrage.  The Judge Rotenberg Center, the systematic use of restraints and seclusion rooms in our schools as described in the NYTimes OpEd piece are but a few examples of what happens when we allow ourselves to think of people as “low functioning,” “severely Autistic” or any of the other words so readily used when speaking of Autism .  Those words make incorrect assumptions about a person’s intellect, capabilities and cognition.

When organizations like Autism Speaks and others like them fan the flames of fear by using words like epidemic, devastating, and use war terminology regarding Autism and Autistic people we are creating a toxic environment for those who are Autistic, an environment our children, who will one day grow up to become adults, will inherit.  There is a connection to the current words being used when talking about Autism and the abuse of Autistics.

All of us, each one of us must ask ourselves – if you were unable to speak in a language that those who had power over you understood, if you were spoken of as “broken,” “deficient,” “low functioning” and people treated you as though you were incapable of understanding because you could not make yourself understood, even though you continuously tried, if you were then punished, scolded, yelled at, drugged, restrained, shocked, put into a dark room because you expressed your frustration in the only way you knew how – by acting out, by becoming violent, by self harming –  what would you do?  How would YOU feel?  At what point do our actions constitute torture?

Countless articles have been written about the abuse of disabled children and yet the abuse continues.  Mother Jones published an article  about the Judge Rotenberg Center in 2007, recently updated entitled School of Shock.  

“The Rotenberg Center is the only facility in the country that disciplines students by shocking them, a form of punishment not inflicted on serial killers or child molesters or any of the 2.2 million inmates now incarcerated in U.S. jails and prisons.”

The words we use, the organizations we support, the way we speak to and about our Autistic children, as well as Autistic people, matters.  I have done so many things wrong in raising my daughter, I cannot fit it all into a single post.  I have so many regrets, I could fill several pages with the things I tried all in the name of “helping her.”  Emma could not tell me how she felt about the various treatments and remedies I tried and I never thought to ask.  I’ve written about all of this before, the DAN doctors, the specialists, the pediatricians, the stem cell treatments.  If I sit and contemplate what I’ve done to my daughter with the best of intentions, I can barely move.  I feel devastated.  I know I didn’t mean to hurt her.  I know I didn’t mean to harm her.  I know.  I did it because I thought that as her mother it was the right thing to do.  Now I know differently.  Now I know what I did was wrong.  And the only thing I can do moving forward is write about it honestly.  Talk about it.  I can make sure I do things differently now.  I can make sure I talk about these things openly, honestly, not because I am intent on beating myself up, nothing good comes of that, but because maybe, just maybe others may learn from my mistakes.

What we do, how we behave, what we say and how we say it matters.  This is the ripple effect.

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Joe Scarborough’s Ignorance And What It Means To The American Public

I wanted to write about how Richard came home yesterday (Yay!) and how we took Emma to the Chelsea Market and how she insisted on wearing a pair of black patent leather shoes, turquoise tank top and pink terry cloth shorts with white hearts.  I wanted to post a couple of photos of her so you could see for yourself how great she looks, but when I sat down to write I knew I had to write about something else.

I don’t want to talk about Joe Scarborough any more.  Yet his unfortunate, ridiculous, careless and ignorant remarks, make it impossible not to mention him, because he has a huge following, because people imagine he knows something about Autism.  Joe Scarborough’s remarks are indicative of a larger issue – ignorance and misinformation, which leads to opinions and a general consensus about Autism that is incorrect.  One such commenter on an article about Joe Scarborough’s remarks, said he believed Joe Scarborough knew more about autism than he did because he has a son who is Autistic.  And that is exactly why this is about more than just some asshole with a radio show.  There are countless people spewing all kinds of venom on the radio and everywhere else.  Much of it is dismissed.  But when someone, whether it’s a pseudo celebrity or a talk show host with a large following says they have a child on the spectrum ears perk up.  Forget that AUTISTICS are talking about what it’s like to be autistic ALL THE TIME and their words are almost never in accordance with what that parent with an Autistic child is saying.

So just to reiterate:

Autism is NOT a “mental health” issue.  It is neurological, neither good nor bad, just DIFFERENT.

Joe Scarborough, (I know, there’s his name again) said in a statement he made yesterday, which was neither apologetic nor a retraction from his original inflammatory comments, “I look forward to continuing my work with wonderful organizations like Autism Speaks to provide badly needed support to millions of Americans who struggle with Autism every day.”

Autism Speaks does NOT provide badly needed support to Autistics.  In fact Autism Speaks is uniformly HATED by a massive number of Autistics who speak to that fact on a daily basis.  If you google “Autistics who hate Autism Speaks” you will see more than a dozen pages of links addressing why this is so.  (Really, I just googled it.)

While I’m at it, let’s dispel a couple more myths, something Autistics are doing ALL the time on their blogs.

Autistic people are not inherently violent.

Autistic people do not LACK empathy.

Autistic people are not all loners sitting in a corner banging their heads against the wall  (That would better describe me right about now)  until they can no longer take it and go on a murderous rampage.

Autistic people are not all depressed and friendless.

I’m depressed right now.  But this isn’t about me, or how I feel, or anything else that contains the word, me or I.  This is about prejudices and prejudices are always negative, reinforced by ignorance, ingested by those who believe they are being told the truth by someone who is more knowledgable than they are about something they know nothing about.  This is how it works.  This is how it has always worked throughout history, the demonization of a group of people whose voices are drowned out by the larger roar of ignorance and stupidity.

I refuse to end on this note, however.  So here.  Here are a couple of photos of Emma in the outfit she threw on to go to Chelsea Market yesterday evening.  Because Em is one more example of what Autism looks like.  Emma is inherently HAPPY.  Emma is inherently SOCIAL.  Emma is inherently KIND.  Emma is inherently EMPATHIC.  I’m trying really hard to follow her lead.

This is Autism.  This is Emma.

Loved that as I took this photo a woman wearing black patent leather pumps and turquoise dress walked toward her!

“I can’t reach!”

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Parenting and The Depiction of Autism in the Media

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.

Birthday Parties

Birthday parties, anticipated with great excitement by neuro-typical children, are something parents of autistic children often dread.  Many autistic kids have sensory issues, which cause them to crash when they are over or under stimulated.  Emma has both and it’s impossible to predict what might trigger her.  Crashing for Emma can mean perseverating on some seemingly insignificant thing – a missing photograph, a stick she picked up and by mistake dropped, a portion of packing tape, a magazine no one knew she cared about that was inadvertently thrown away.  These are the things she uses to calm herself and there’s nothing like a party to trigger the desire for items used for self-soothing suddenly and without warning.  In the past we have witnessed all of the above as well as her wanting something we cannot understand and therefore cannot help her find, which leads to crying or worse, a full melt down.  When in the later mode, we must physically remove her from wherever we are and get her home as expeditiously as possible, something onlookers find baffling and frightening.

A few years ago Emma was invited to a little girl’s birthday “Tea Party”, which took place in the Rose Club of the Plaza Hotel.  Red velvet banquets and gold gilded chairs with couples speaking in hushed tones made me inwardly groan, when we arrived.  How was I going to keep Emma occupied?  What if she was disruptive, unable to sit still?  When the menu was delivered I barely went through the motions of opening it – what was the point?  I knew she wouldn’t eat anything from the menu.  I had the foresight to bring food I knew she’d eat and just hoped the service was quick, given there were eight little girls with a variety of disabilities attending.  My memory of that party is of running after Emma and trying my best to keep her from jumping on the beautifully upholstered furniture or sliding down the marble banister, Mary Poppins style, while avoiding the glares of the hotel staff.

The only other party to rival that one was when Emma turned four.  Given Emma’s love of music, we hired a musician to come to our apartment. We invited a number of children from her special education preschool as well as some neuro-typical children Emma and her older brother, Nic had known since they were babies.   Emma spent most of the party attempting to lie down inside of the musician’s guitar case as the other children danced, ran around or sat politely listening to the music and singing along when appropriate.  My husband, Richard and I took turns excusing ourselves and each went separately into our bathroom where we allowed ourselves a few minutes to cry, before mustering up the strength to return to our guests, doing our best to act as though everything was fine.

That was also the year we had been called into a parent/teacher conference at her special education preschool only to be told our daughter’s development was a “red flag” and that she had “flat-lined”.  It was a tough year.  A year Richard and I still refer to when we feel doubtful of Emma’s current progress.  That year marked a time of desperation, sadness and a general feeling of impotence on our part.   It seemed whatever therapy we tried, whatever medical interventions we took on, nothing made a difference.

Emma’s most successful birthday parties have been when we’ve rented a gym, as we did a few months ago for her 9th birthday (we’re learning) or when we’ve planned the party in some other equally active place.  This past birthday, we rented a gym for her birthday party and the following day took her and Nic to Bounce U in Brooklyn where she ran into a friend from her special education school and everyone had a blast.

Emma at Bounce U

For more on Emma’s journey through a childhood of autism go to: www.EmmasHopeBook.com

Autism – Questions

How much does my child really understand?  What is she thinking?  What is it like to live in her body?  What sounds does she hear?  Does she know what she wants to say, but somewhere in between the thought and the attempt to verbalize it, the meaning becomes lost?  Does she believe she is saying something, only to have us respond with bewilderment?  What does she see?  What does she feel?

Many autistic children through various communication devices have allowed us to see and hear what they are thinking and feeling.  What they are able to tell us is both heartbreaking as well as miraculous.  Heartbreaking because they are aware of so much more than they appear, they know they are different, they know so much more than they are able to communicate, have complicated, busy inner lives, know anxiety, stress, depression, joy, boredom.

When Emma first spoke she said, Da-da, ah-done, and a series of other words and phrases typical of a baby learning to speak.  There was little to give us concern.  What was unusual was the language acquired did not serve as building blocks upon which more language was added.  At the age of 18 months Emma said – Chase me – we heard her say that for a few months, then it disappeared, never to be heard again.  There were many words acquired then seemingly forgotten.

In the field of autism, this is referred to as regressive autism.  Typically a child follows a neuro-typical child’s development, but at around 15 – 30 months begins to regress.  However we continue to see our eight-year old Emma “learn” things, only to forget them later.  Emma’s progress is not the steady progress one sees with neuro-typical children.  Hers is more of a hic-cup.  She paints with her brother, we document it, take photographs, exult in what amazing progress this means, only to have her never repeat the action.  Countless times my husband and I have recounted to one another something Emma has said or done only to see it never repeated.  The idea of a base of knowledge being constructed, the logical progression of a skill acquired, leading to another and another has not been Emma’s path.  We are teased into believing something has been learned only to see our expectation and hope thwarted.  We are left waiting.  Yet some other action will then occur – wholly unexpected – to raise our hopes anew.

Once when Emma was about three I took her to the dentist where it was found she had one tooth more on the bottom than is usual and one less than the norm on the top.

“Is this unusual?” I asked the dentist.

“Why shouldn’t it be?  Everything else about her is,” the dentist smiled.

I think of Emma’s progress and often despair.  Yet why should her progress follow the same path as a neuro-typical child’s?   Emma leap frogs where other children slowly, methodically climb.  Emma shows tremendous bursts of cognition followed by lethargy and meltdowns.  This is Emma’s way.  Hers is not the path of other children.  But it is a path, nevertheless.  One I feel privileged to accompany her on.