Saturday, March 31, 2012

Autism and awareness at 13...Oh My!

Saturday, March 31, 20

This is cross posted from my blog "Herd"

~"Pretty much all the honest truth-telling there is in the world is done by children."~
Oliver Wendell Holmes

*Sigh* It is that time of year again..  Once again, I am being swamped with invitations and name it.  It seems that everyone is talking about wearing blue, lighting it up blue...and if it isn't about blue it is about puzzle pieces...April is Autism awareness month. AND once again, I'm being told by people already aware that we need to get together and be more aware so that unaware people will gain awareness. Say thatten times fast. I am not a fan of this yearly event, and I fully expressed my thoughts on this last April.  So..this year, I thought I would do something a little bit different. This year, I'm going right to the source. 

"Hey Sam!?"  "Yeah Mama?" "Come here please...I want to talk to you."  "What?" "I want to interview you."
"For what?".."My blog." "Your blog? O.K!.".."It is gonna be about that o.k?." "Umm yeah...sure."  "I'm just going to ask you some questions..alright?" .."sure."

Me-"Have you seen those ribbons people wear?  They are either blue or colorful with puzzle pieces on the?"
Sam-"Ribbons?....Oh! yes-yes I have."
Me-"Do you know what they are for?"
Sam-"Not really."
Me-"They are supposed to represent "autism" month is autism awareness month."
Sam"What's that?"
Me-" means that the month is dedicated to making people aware about autism...What do you think about that?"
Sam-"Do you mean "cure it"."
Me-"Maybe some people."
Sam-"Then I don't like it."
Sam-"Because you shouldn't poke around in peoples might mess them up."
Me-"Yeah...but..well...look at you. You are going to go to will have a Oscar on the other hand might not...and what about Frank? (Frank(changed name) is a boy that we know who is severely affected by autism) Things sometimes seem harder for them.  What do you think we should do for them?
Sam-Hey..they are good guys!  I like them just the way they are!"
Me-"But what do you think we should do for them?"
Sam"We should educate them..make sure they are's like that line.."
Sam-"You know..I'm on one part of it..and Oscar is on another?"
Me-"You mean the spectrum."
Sam-"Yes-the spectrum.  Look-just because they are on one place doesn't mean they aren't people! Hey-they might be different..but they are people. They have feelings!"
Me-Hey-I agree with you! 
Sam-"Look-being different is o.k.!"
Me-"It is! I think though..well..I think sometimes different is hard."
Me-"You are different from a lot of your friends at school"
Me-"Does having autism bother you?"
Me-"Well...tell me what you like about it?"
Sam-"I like how I think. The pictures I see."
Me-"What don't you like?"
Sam-"Well..look-everyone at school is always texting...the guys are all in the hall texting the girls and they are texting back..and I don't understand it..I don't get it. That doesn't interest me.."

(as a side note-I think the world at large texts way too much.  Funny-my kids were taught that they had to TALK to people..and all the people they have been made to talk to- are texting.  Anyone else see the irony here?)
Me-"That's alright..You don't have to be interested....Do you know what the word disability means?"
Me" is like this..if you were blind-you would be considered disabled...because the world in general is built around people who can see.."
Me-"Well...did you know that autism is considered a disability?" That some of the things that affect you are considered a disability..Like how you don't like to sweat..or..remember when you stopped talking?"
Sam-"I do remember. I couldn't hear what people were saying was like everyone's words sounded all blingglablahblahgla...I could here some words...but mostly it was all mixed up..I used to only see the movies I watched over and over in my head..I knew who you were..but everything was black around me...except for the movies...and then you remember standing on that porch with me?"
Me-"What porch?"
Sam-"It was when we lived in the blue house..I was standing there with you and it was like everything snapped into place..and the movies in my head stopped.
Me"Wow..just..I never knew that."
Sam-"Yeah it was like I got colors back."
Me-"That is really really interesting everything sound right now?"
Sam-"Well if people are far away and they talk to me...sometimes the words still get mixed up."
Me-"That is considered a disability..auditory processing disorder.."
Sam-"Look-everyone is on the spectrum"
Me-"what do you mean?"
Sam-"Look, the whole world is a spectrum and we are on it."
Me-"Well...there are adults who as they got to be my age, say that they identify with autism..that maybe they are on the spectrum..."
Me-"What's so funny?"
Sam-"Why?'s like biting your tongue and telling people you you get what I'm saying?"
Sam-"Say someone lived inside their house and bit there tongue...and then years later came out and told people they bit there tongue.  What's the point?"
Me-"I..well..I don't know."
Sam-"We are all on the spectrum somewhere..."
Me-"So how do you feel about this whole awareness thing?"
Sam-"'s like that ribbon is a giant monster...and its birthday is in the month of April..and everyone has to celebrate it's birthday or they will be turned into little monsters. Do you get it?"
Me-"Maybe...I have to think about that one.."
Sam-"Alright...can we be done? Can I go on the computer?"
Me-"Yeah...thanks buddy."

    There is really nothing more that I can add to this.  I believe I will let my sons words stand on their own.  Because they can-and isn't that wonderful?   This week, Sam (much to his delight) surpassed me in height..perhaps he surpassed me in wisdom as well.
 "Out of the mouths of babes oft times come gems..."(prov.)

If you care to comment-please remember-this is my son-I would appreciate if you would respect that.

Friday, March 23, 2012

Why Principled Positions Matter: The Judge Rotenberg Center and Autism Organizations

Also crossposted at Countering and Science 2.0.-- Kim Wombles
How a society treats the disabled, especially those in need of specialized care due to aggressive behaviors and self-injurious behaviors, says a lot about the morality and compassion of that society. Are they locked away out of sight, left to live in horrendous conditions, abandoned not only by society, but by family members as well? The United States does not have a good record when it comes to the care provided to the mentally and physically disabled. From lobotomies to forced sterilization, from electric shock therapy and restraint systems that resemble the horrors of a torturer’s chamber, we as a society have wreaked havoc on those unable to defend themselves.
And then, in an effort to make things better, we closed several institutions and placed the disabled in their communities, except that we failed to fund group homes adequately, we failed to legislate adequate training for carers, we paid the caregivers substandard wages, and we neglected to make sure those placed in the community were safe and well-cared for. In actuality, many ended up homeless, some ended up in jail, and ill-equipped families took in their disabled and did the best they could with no training, little support, and few opportunities.
Today, our society is facing an overwhelming crisis of what to do and how to help those who are disabled have equal access to society and all that being a full member of society entails: work that is fulfilling, socialization opportunities and safe living environments. Parents and families struggle to find appropriate programs from early childhood on as school districts prove themselves ill-equipped to provide for the disabled and as our children reach adulthood, we and our adult children find ourselves struggling to find workable solutions that keep our loved ones safe and allow them autonomy and satisfaction.
Some disabled individuals, faced with a past that failed to help them get aggressive behaviors and self-injurious behaviors under control, end up in jail for attacking their caregivers or carted off to various institutions until there’s no place left that will take them, except the Judge Rotenberg Center, which prides itself on not rejecting anyone. Of course, one of the hidden costs of admission is being hooked up to electrodes that will shock the individual should he engage in any behavior deemed unacceptable. In addition to shocks administered by staff with minimal training, restraints, including four-point restraints, are a favored tactic.
You would think that the stories that come out of the center would ensure its closing, but instead parents of those institutionalized there go before the Massachusetts government  and argue that the shocks are good things. And perhaps, for the parents, grown children suddenly malleable and cowed, seems like a boon. Parents go home with the shock boxes and the ability to stop their children on a dime if  they choose to act out. Who wouldn't want the ability to taser an aggressive individual, right? And that is what it's tantamount to: tasering. 
Abuse story after abuse story comes out, advocates and organizations rallyand the federal justice department investigates, and yet nothing really changes. Autistic advocates and parent advocates have come together over the years, writing piece after piece, like Lydia Brown's work on  and at the Autism Education Project and Marj Hatzell's piece in The Stir. The ICAA recently wrote about the center, noting that "The GED skin shocks were created and used by the JRC to deliberately apply painful burns to the skin of people with disabilities who become students at the JRC in Massachusetts. The skin shocks are many times more powerful than that of an average dog shock collar which is universally considered abuse for humans and is controversial for use on dogs or other animals."
This should be a no-brainer for anyone concerned with the humane and responsible care and education of individuals with disabilities. It should be an easy thing to stand up and say "We stand against the restraint, abuse, and torture of the disabled." Every organization dealing with disabled populations should feel a moral imperative to do this: to stand against the Judge Rotenberg Center and its thirty year plus history of shocking clients, refusing food, restraining for hours without any kind of break for the client. 
However, that is definitely not the case. Two major autism organizations have not stood up and led the way on this issue. Two major autism non-profits have failed to stand against restraint, seclusion, the withholding of food, and the administration of painful shocks that the Judge Rotenberg Center engages in. Autism Speaks and the Autism Society have chosen, for whatever reason, to remain silent on an issue their stature and recognition among the public would certainly bring attention to.
 Autism Speaks has no official statement on the center, according to Marc Sirkin, Autism Speaks Vice President, Social Marketing & Online Fundraising. The Autism Society did not respond to a request for its position on the center and no information about Judge Rotenberg Center could be found on the society's website.
The National Autism Association stands up against the Judge Rotenberg Center. So do these organizations, who in 2009, stood up for those institutionalized at the Judge Rotenberg Center:
American Association on Intellectual and Developmental Disabilities  
Association of University Centers on Disabilities   
The Arc of the U.S.   
Autism National Committee (AutCom)     
The Autistic Self Advocacy Network     
Center on Human Policy, Law, and Disability Studies, Syracuse University     
The Coalition for the Legal Rights of People with Disabilities      
Cobb and Douglas Counties Community Service Boards              
Connecticut Council on Developmental Disabilities               
Disability Rights Education and Defense Fund               
Easter Seals            
Exceptional Parent Magazine             
Hope House Foundation                     

The Learning Community for Person Centered Practices         
The Maine Independent Media Center            
Maryland Coalition for Inclusive Education          
National Association of County Behavioral Health and Developmental Disability Directors 
National Association of Councils on Developmental Disabilities 
National Association for the Dually Diagnosed (NADD) 
National Disability Rights Network Washington, DC
The National Leadership Consortium on Developmental Disabilities, University of Delaware 
Respect ABILITY Law Center             
RHA Howell, Inc.                   
Self Advocates Becoming Empowered            
United Cerebral Palsy          
University of Medicine and Dentistry of New Jersey, School of Nursing           
University of San Diego Autism Institute             
The Voices and and Choices of Autism            

Men and women of good conscience cannot stand quiet on this issue. Each day, disabled individuals at the center are being shocked, some for having the temerity to refuse to remain seated. When concerns about money take precedence over the absolute right of human beings to be free from torture, restraint, and abuse, the morality of society as a whole is in jeopardy.
I call upon these two organizations, Autism Speaks and the Autism Society, to take a moral stand--to speak up for the victims of the Judge Rotenberg Center, to put the weight and clout of being multi-million dollar organizations into getting the center shut down and the aversive shocks outlawed permanently. 
Don't let a handful of parents arguing before the Massachusetts government for the continued abuse of their children keep you, Autism Speaks and Autism Society, from speaking out and helping to put a stop to this. Don't let the fear of offense to those who would line your coffers keep you silent.  
To fail to speak, to fail to act, to fail to show compassion and respect for the rights of these individuals who find themselves consigned to the bizarro world of the center with its opulent reward centers coupled with abusive, painful shocks, some of which come by the dozens, is to fail humanity utterly.
To be at the forefront of the autism community, to wield fiscal power, demands integrity of the highest order. Failing to speak out against acts like those that happened to Andre McCollins is simply unconscionable. 

Tuesday, March 13, 2012

Platforms, Bridges and The way it is...

I wrote this post almost two years ago.  It was in response to many things..most notably, some tragedies that had been discussed within the online autism community. Well, tragedy has once again struck. Again there has been much "discussion." Sides have been taken-lines have been drawn. This deeply upsets me-on so many levels.  No one ever really knows what another person is thinking, feeling, or why they do the things that they do.  They(myself included) can guess, they can suppose, they can make suppositions, argue and judge. All the while never looking at all the pieces-and instead, only finding the ones that best support their position.

   A mother killed her son and then herself. Two lives were lost. Two.  This is not a time for argument-or debating the worth of one life over another. Who deserves more compassion-or who loves their kids more. This is a horrific and terrible tragedy. One that maybe could have been prevented.  I don't have the answer to that. I was not there, I was not in that mothers head. None of us were.  I do know that I feel incredible compassion and empathy for the two people involved.  So maybe ..instead of arguing with each other over who deserves more sympathy or who REALLY loves their children..maybe we can honor those two lost lives by by reaching out to each other. By building bridges instead of platforms..and maybe we can stop something like this from ever happening again...


The way it is..

"Well I looked my demons in the eyes, laid bare my chest, said "Do your best, destroy me.
 You see, I've been to hell and back so many times I must admit you kind of bore me."
Theres a lot of things can kill a man, theres a lot of ways to die
. Listen, some already did and walk beside me.
 Theres a lot of things I don't understand.
  Why so many people lie.
  It's the hurt I hide that fuels the fire inside me."
Ray Lamontagne

  I don't think I can really remember a time before autism.  Oh sure, I can divide my life in pieces..There was the time" before kids" and the time "after kids". There is a clean divide.  There was a time when we had so much more freedom..and a time when we had lots less. Kids do that to you. Now, as they get older, I find myself having more freedom again.  But it isn't the same kind as" before kids".  Because no matter what, they are always on your mind, there are always pieces of them that travel with you. Kind of like a backpack crazy glued to your heart.  I think it is just the nature of being a parent.

  When I say that I don't remember a time before autism, I mean that my kids were always autistic.  I don't know having children any other way. I never lamented their being anything other than who they are, because they have always been who they are. I had nothing other than themselves to measure against. Does that make sense?  How could I possibly mourn something that never was. I'd much rather celebrate what is. I guess in a nice way I'm saying that I don't understand when I hear about parents speaking desperately of "recovering  their child". I always think" recover?"  "They're right in front of you"!  Understand, this doesn't mean that I don't help my kids, work with them,or get them the services and supports they need.  That is my job-my responsibility.  It is called being a parent. Whether my kids are neuro typical, have three heads or autism-it is what a parent is supposed to do. 

  I know that people mean well when they say things like "I don't know how you've done it" to me. But it really annoys the crap out of me. How I've done what?  These are the only kids I've known as a parent. I don't deserve a medal for that. That doesn't mean I wouldn't like a medal though..NOT for raising autistic kids-but maybe for getting them all fed, and dressed in clean clothes on a daily basis, for not losing my patience (too much) when they can't find their shoes, or when they are fighting over one thing or another. Yes, there are days when a parade in my honor would be nice. 

  Believe me, I am in no way minimizing what it takes to raise children with disabilities. The early days with my boys were some of my hardest. There were years of sleep deprivation of ceaseless screaming, times when I became a punching bag because I thought that was better than letting them slam their heads into the walls or the glass windows. There were times when I wanted to quit-to give up, to run away from home and join the Foreign Legion. Oh the powerlessness I felt.  Because I was their mother-and I didn't know what to do-how to help them-to make their world right .But  never-not ever, NOT ONCE did I hate them, or blame them, or wish them away.  Those feelings were instead directed towards myself because I felt helpless. Like a failure. I was the Mom-it is MY JOB to makes things right. My job to figure things out. To make their world better. It wasn't up to them. I have never been burdened by their disabilities-but rather, my own inability. Although I look at them now and think we've done o.k. They continue to develop and thrive. Sometimes I think it is because we let them just be. Wait!  Before any nay sayers start with their naying..Letting them be means simply that although we got them services and supports-and have continually helped them to learn and grow-we never treated them as if they were" less than" or" broken". Got it? So I don' think that I deserve a medal for doing my job. (although if you would like to send me chocolate or coffee, I won't complain)  I chose to have children. That is where my choice ended. These are the ones I have. Case closed.

  The past week or so the online autism community has been abuzz with a couple of stories. Two mothers did the unthinkable. They murdered their children. One of the mothers killed herself as well. The reason given in both cases was that they had autistic children and were overwhelmed by it. Some prominent people in the community are using this as a platform. Claiming that this is just the beginning-that we are going to see more and more of these stories because not enough is being done to help parents of autistic children.  No mention is made of the innocent victims-nor of the probable mental instability of the mothers-none. Nope, it is all about the evil autism...and I am reeling. Yes, there does need to be more done-more services, more programs-more support.  I don't argue that. However, I find it morally reprehensible that it is being argued for in this way. I also find it offensive....and a lot of other strong words-that I don't use on this blog.(but I do use in regular life)

  I came across another parent's blog this past week.  It was by a mom who was raising a child with medical issues.  Sadly, last week her daughter died. In her post she spoke of her loss her agony..her girl..and of how she would miss her for the rest of her life..the rest of her life. I thought to myself.."parenting never ends" (I say that in a loving way).. I know that when I look at my each individual child-at all that they are..I can say the same. Because no matter what..regardless of how they are..what they look like..who they become..I will fight for them, work for them and advocate because I am their mother..and I will love them for the rest of my life.  

Saturday, March 3, 2012

Book Review: Cindy Ariel's Loving Someone with Asperger's Syndrome

Part guidebook, part workbook, Ariel's book for neurotypical partners is sure to be considered a boon for spouses who know almost nothing about Asperger's Syndrome. Written by  Cindy Ariel, a licensed psychologist who provides therapy for a variety of issues, including relationships, it is an easy-to-read guide to understanding Asperger's Syndrome and why partners on the spectrum behave in ways that may be hard for those unfamiliar with the syndrome to understand.

Much of this book is valuable for any couple struggling with issues dealing with miscommunication and unmet expectations. It does have a few areas of concern, though, that may make it unpalatable to some people on the spectrum: mention of Maxine Aston's Cassandra Syndrome is certain to rile those familiar with her speculations that neurotypical partners are victimized by their autistic mates and a failure to include any autistic voices in the text. To be fair, the voices of neurotypical partners are not included, either, and this lack of real-life examples both keeps this book at a manageable length and avoids any additional emotional entanglement. 

The best people, though, to explain what is going on in the autistic mind are autistic people. Therapists can certainly be helpful in negotiating compromise and fostering mutual respect and compassion, and this is something that Ariel does stress in her text, but in the end, each partner must be willing to offer his or her own insight and explanation for their actions and behaviors. 

In her concluding chapter, Ariel writes, "Make your life what you want it to be. If you want change, you must start by changing yourself." This is good advice for anyone. It isn't enough to want things to be different; we have to be willing to act, and gaining information and insight is a good first step towards effective action.

Thursday, March 1, 2012

Dialogue is Painful by Lydia Brown

Lydia blogs very eloquently at Autistic Hoya. Given the continued difficulties communicating our realities in a way that is honest and yet respectful of others, this is a very timely post--Kim

Since the Thinking Person’s Guide to Autism hosted the Self-Advocate/Parent Dialogues over a period of two weeks from September to October 2011, there has been a continued and consistent flurry of discussion and responses to the dialogues in the blogosphere. In the last few months, it’s mostly died down, with only occasional articles and posts addressing the complex, interwoven, and intricate relationships between parents and Autistics and Autistic parents.

When Kim Wombles asked me to write a response to the dialogues close to six months ago, I was at first excited and enthusiastic to embark on such a project -- to join a conversation that had been watched with keen interest throughout the autism community.

It took about two days before I realized that I was tackling a series of complex issues that no one article or blog post could truly do justice. So I kept procrastinating. I put the article at the end of a rather long to do list, reassuring myself (and Kim) that I was working on it and would have it done in a timely fashion. Occasionally I would think of ideas or phrases to use in this article, but just as quickly, I would discard those same ideas as too cliche or lacking the right amount of nuance for the feelings and ideas I hoped to convey.

It’s five months after I received that email, and still I fear whether I can adequately address the myriad of underlying issues that have been brought to light through the TPGA-hosted dialogues, and all of the subsequent writings from the autism and Autistic communities since then.

Let me start, then, with a simple declaration.

Dialogue is painful.

That might seem like a pessimistic statement, a defeatist declaration, or a cynical look at the possibilities for the outcomes of these dialogues. But it is a true statement. We have seen this to be true throughout history and across the world. Whether it is the family member of a murder victim engaging in dialogue with the condemned inmate who committed the deed as part of a restorative justice program, or children from Israel and Palestine engaging in dialogue at a peace camp, or survivors of genocide engaging in dialogue with the perpetrators of the crimes against humanity -- dialogue is painful.

To dialogue means to engage in a reciprocal conversation in which all participants are equal (setting aside privilege or familiar footing) and equally welcome and accepted. A true dialogue is an open conversation in which nothing is hidden or withheld, nothing is sugar-coated or skirted, and nothing is off-limits or out-of-bounds. To be put on equal footing means that the participants in a dialogue have to relinquish their need to be cautious in every word. It means, in a sense, that they have to relinquish their privacy.

Dialogues are about people. People have pasts. They have experiences and emotions and ideas. Dialogues must reflect and include all of that -- the best and worst parts. And we all know that it is impossible to talk about sensitive topics, or indeed any topic in which one is personally and emotionally vested, without eliciting passionate emotions. We have to recognize that. Especially when we dialogue about autism -- each of us has a deep and personal connection to autism, whether it is by way of being Autistic, having a family member who is Autistic, or otherwise. Many of us have had painful experiences. Words like anxiety, depression, and indignation resonate with the members of our community very well.

Thus, dialogue is painful.

But it doesn’t stop there. Dialogue has to be painful, because if it’s not painful, then it isn’t -- and won’t be -- succeeding. The problems that we encounter arise when we allow our emotions -- of deep hurt and offense -- to influence our words to each other. It is very easy to speak from anger or hurt, but it is very difficult to speak of anger or hurt.

This is one of the major reasons why our community has seen such vitriol and vicious infighting over the last several years. Each of us has had such intimately painful experiences for an entire amalgam of reasons, and when we hear another person say something that seems to ignore, dismiss, or diminish those very real experiences, we have the natural tendency to retaliate through harsh words. That’s true of all of us, by the way. It is not exclusive to Autistic self-advocates, or to non-Autistic parent advocates, or to Autistic parents of Autistic children.

But let’s not dwell too long on the past. It is wrong to ignore the past and to ignore past experiences. It is equally wrong, however, to languish in it without attempting to move forward. After all, dialogue has a purpose. The purpose of dialogue is to use such open conversation as a means of achieving some goal or outcome -- in this case, I think, to bridge the often mutually alienated Autistic self-advocate and non-Autistic parent advocate communities (and to include Autistic parents of Autistic children, who have often stated their frustrations with the non-Autistic parent community.)

What are the problems, then?

The original dialogue participants and many of the responses to the dialogues touch upon a whole host of them. First and foremost is language. One of the primary purposes for language is to communicate and express ideas, but a major pitfall to interpersonal communication occurs when one person uses language with the intent of expressing one idea, and another person understands that same language with an entirely different nuance. Other pitfalls come when definitions have not been agreed upon before entering dialogue, or when certain language has come to be associated with negative connotations among members of one group but not another.

These consistent failures to communicate over shared use of language can and do result in miscommunications. It is evident to me that the failures in our community’s ability to dialogue within itself are the result of gross misunderstandings and misconceptions on all sides of the aisles.

Some Autistic self-advocates fail to adequately recognize in their words that the vast majority of non-Autistic parents care deeply about their Autistic children and genuinely want what is best for them. Similarly, many non-Autistic parents fail to adequately recognize that Autistic adults who are not their children have valuable and important voices in the national conversation about autism. (In fact, it may be that Autistic adults may be the best role models for Autistic children -- but that’s a conversation for another time.)

Yet despite the very valid expressions of discontent, disappointment, frustration, and hurt resulting from the vitriol and infighting within out community, there are occasional instances where we see that cooperation and joint efforts can effect powerful change. This became more evident after the petition demanding systemic changes in a county in Kentucky after an Autistic child was restrained and confined to a bag intended for sensory integration therapy -- it has over 191,000 signatures to date, and did not merely draw non-Autistic parents of Autistic children together with Autistics and Autistic parents, but also galvanized national attention around the systematic abuse of restraints, seclusion, and aversives in a way that has never really happened before.

So what should we expect when entering dialogue?

Expect to be offended. Expect to cause offense. Expect to misunderstand. Expect to be misunderstood. Expect to recognize privilege that you have. Expect to have your perceptions challenged and questioned. Expect to be upset. Expect to be emotionally involved. If those things aren’t happening, then neither is dialogue.




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