Tag Archives: Autism Speaks

Autism Awareness?

Posted on April 3, 2013 | 26 Comments

It’s interesting to note that the word awareness, when paired with the verb “to be” as in – be aware, is easily visualized and thought of as, “beware” which dramatically changes the meaning.  It no longer is a word of benign information, but instead is a word of caution and fear.  I do not think this is a mistake.  I know it’s cynical of me, but I think Autism Speaks, the single largest organization involved in Autism and the creator of the “Autism Awareness” campaign, chose their wording carefully.  I’d like to think I’m giving them more credit than they deserve, but for a company that spends more on PR than they do on actually helping families and those who are Autistic, I don’t believe I am.

My awareness of autism has dramatically changed over the years.  It has changed because of the information I’ve found and been given.  In the beginning, my information came from books, autism organizations, various professionals, a couple of neurologists, our pediatrician; surprisingly the more “credentialed” the person was, the more likely they were to admit how little they actually knew about autism.  In retrospect this was my first real lesson in awareness – beware of organizations and those who believe they “know” all about autism, whether that is the cause or which specific methodologies, treatments or therapies your child will be best served by, because they do not know, despite how vehemently and persuasively they may speak.

As time went on, I became increasingly aware of my own misery.  The common misery supposedly shared by us parents, dominated the conversations surrounding autism.  I became fixated on the “fact” that autism was the cause of my misery and set about removing it from all our lives.  This is where awareness took me.  This was what I knew and understood.  But this is not the sort of awareness I want to be a part of.  This is not the kind of information I wish I’d gotten, nor is it the information I hope other parents and families will receive.  Those first few months after receiving the diagnosis are critical.  How we talk about autism and by extension our Autistic child changes all that we then do and where we focus our energies.

Autism did not cause me to be miserable.  I was concerned and I was scared, but my daughter’s neurology was factually not what frightened me, it was what I was being told about her neurology that terrified me.  Had someone said to me when we were still trying to get her out of diapers when she was seven years old – “it’s going to be okay, here are a couple of different things you can try, but remember most people do get out of diapers, eventually” I would have felt a little calmer.  Had someone said to us when our daughter was six years old, “read to her age appropriate material, teach her age appropriate lessons” I might have felt confused, I might have had a great many questions, but I wouldn’t have felt the fear I felt when we were informed she could not possibly be placed in a school with her same age peers.  Had someone said to us when we first received her diagnosis, “presume competence, she can and will learn, but she will learn at a different pace, she will learn differently than you might expect” I might have felt concern, but I would not have felt the kind of despair I felt when I questioned whether she was capable of learning at all.

If we want to have more awareness about Autism then let’s have it come from those who are actually Autistic.  Because if you are like me, these are the people who will change your views and shift your mind away from the “tragic” to the far more helpful information that might actually help you help your child.  The kind of information that opened our minds to different forms of communicating, different ways of learning, all those things that have actually aided us in helping our daughter.  Our judgments about her neurology and all it meant to us and her, did not help us do anything but feel more fearful and miserable.

Below is a small list of people I know and am in touch with.  I’ve provided a link to their blog, book(s) or film to each of their names.  I will feature more people who have helped me in my growing awareness during this month of April.  I’ve separated those who can speak, but depending on the circumstances lose speech, with those who mostly do not speak, but ALL communicate.  Want to become aware?  Read their words.

Non-Speaking Autistic:

Amy Sequenzia, Barb Rentenbach, Peyton Goddard, Emma, Tracy Thresher, Henry Frost, Tito Mukhopadhyay

Autistic:

Ibby Grace, Gareeth, Kassiane, Paula Durbin-Westby, Landon Bryce, Julia Bascom, E., Renee, Judy Endow, Michael Scott Monje Jr.

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Posted in Autism, Autism "Awareness", Parenting

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Light it up Blue? – No

Posted on March 28, 2013 | 44 Comments

I must interrupt my previously planned programming regarding the recording of Barb’s audio book, I might be you and mention the “light it up blue” campaign from Autism Speaks, as April is fast upon us.  I know a great many, really well-meaning people will be “lighting it up blue” on at least one day in April, but I urge you to reconsider.  For those of you who love reading links to other relevant posts on the topic, here you go…

Warning April is Coming! ~ Gareeth’s Blog

Autism Acceptance Day ~ This blog was started by Paula Durbin-Westby and originally began as a way to counter the “awareness” that Autism Speaks suggests it is promoting.

Tone it Down Taupe This April!! ~ From Radical Neurodivergence Speaking an alternative to the “light it up blue” campaign!  This is a MUST read and it’s also very funny.

For those of you who can’t cope with yet another link, let me try to explain.  ”Lighting it up blue” seems like a perfectly benign and thoughtful thing to do, yet what is meant as a token gesture of caring and thoughtfulness, is actually anything but that.  Lighting it up blue is an ad campaign by Autism Speaks.  It is less about bringing any real awareness about autism or the lives being led by those who are Autistic and everything about branding and promoting that brand that is Autism Speaks.  It is a brilliant campaign.  Most people who “light it up blue” believe they are showing solidarity and support to Autistic people.  Most people would be shocked to know that Autism Speaks is the single most powerful organization promoting fear of autism by using language to describe autism as a “terrifying epidemic,” “a crisis” and Autistic people as “burdens” to society.

This quote is taken from Autism Speaks website:

“Acceptance
Ultimately, you may feel a sense of acceptance. It’s helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism.”

This sentence encapsulates everything I once believed and thought about autism and my autistic child.  This idea is incredibly destructive and insidious in it’s seemingly benign wording, but it is anything but that.  If we separate out the person from their neurology, what do we have?  How do we do that?  What exactly does this mean?  This sentence from Autism Speaks is exactly what is wrong with the organization.  You cannot accept your child while NOT accepting their neurology.  It is not possible.  Yet this is exactly what I believed for many years to the detriment of my child’s well-being, to the detriment of her self-esteem, to the detriment of who and what she is.  But I didn’t know that.

“Lighting it up blue” is not helping any of our children or those who are Autistic.  The only one who is benefiting from this campaign is the organization who came up with it – Autism Speaks.

So before you head to the hardware store to find some blue light bulbs or open your check book, please, reconsider.   Think how you would feel if this campaign was about your neurology.  Because as Barb Rentenbach has so beautifully written in her book that I am currently recording the audio version for,

I might be you.

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Two Autistics Spoke. How Many Listened?

Posted on November 30, 2012 | 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 | 94 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 interesting 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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GO VOTE!

Posted on November 6, 2012 | 9 Comments

*A version of the following was sent to me a few weeks ago.  This is about women fighting for the right to vote, but it could be the battle engaged by any group in the minority, including those who are Autistic fighting for the right to have a say in the policies that ultimately harm or help them.  It is the same story, told over and over again.  This post was inspired by Lydia Brown’s recent post, Protesting Autism Speaks on her blog Autistic Hoya where she recounts the response she received as she and others offered ASAN (Autistic Self Advocacy Network) flyers to Autism Speaks supporters and asked, “Would you like to hear from Autistic people?” only to be told “No” over and over again.

Less than 100 years ago women did not have the right to vote.

The 19th Amendment, ratified August 18, 1920, granted women the right to vote. Prior to that women marched and picketed as a way to bring attention to their cause.  These tactics succeeded in raising awareness, but were often met with massive resistance and brutality.

On November 15, 1917, known as the “Night of Terror” when the prison warden at the Occoquan Workhouse in Virginia ordered his guards to teach a lesson to the suffragists imprisoned there because they picketed the White House for the right to vote.


By the end of the night, many were barely alive. Forty prison guards wielding clubs and with their warden’s blessing went on a rampage against the 33 women convicted of “obstructing sidewalk traffic”.
One of those women was Lucy Burns. They beat her, chained her hands to the cell bars above her head and left her hanging all night.
Dora Lewis

They threw Dora Lewis into a dark cell, smashed her head against an iron bed, knocking her out. Her cellmate, Alice Cosu, thinking Lewis dead, suffered a heart attack. Additional affidavits describe the guards grabbing, dragging, beating, choking and kicking the women.

Alice Paul

Alice Paul began a hunger strike so they tied her to a chair, forced a tube down her throat and poured liquid into her until she threw up. She was tortured for weeks until word was smuggled out to the press.

Edith Ainge

Voting is our right. It isn’t always convenient, we have to take off early from work, find childcare to watch our kids, stand in long lines, but it is our right. A right our grandmothers and great grandmothers did not have.  It’s easy to take for granted that which we have grown up believing is a given.  But it wasn’t always our right, and while it is doubtful it could ever be taken away, there are many in this world who still do not have that right even today.

Helena Hill Weed – Serving a 3-day sentence for carrying a banner saying, “Governments derive their just powers from the consent of the governed.”

Lest we forget, rights we think are a given, can be taken away.

Go out and vote!

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Autism, Acceptance And Love

Posted on October 25, 2012 | 10 Comments

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

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The Latest From Autism Speaks

Posted on October 11, 2012 | 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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At What Point Do Our Actions Constitute Torture?

Posted on September 10, 2012 | 21 Comments

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

Posted on July 25, 2012 | 25 Comments

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

Posted on May 17, 2012 | 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.

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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