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Voices: Emily Willingham

  • Posted on November 20, 2013 at 10:00 AM

Emily Willingham wrote this heart-felt piece published by Forbes.

Usually, when I land on a Forbes page it’s because I’m researching a piece for a client. Forbes is a fount of respectable business information. But this time I landed on a piece decrying Autism Speaks. In Forbes. That’s gotta hurt!

Apparently Suzanne Wright penned a little missive that pissed Emily off and Forbes is quite the platform for a scathing response like this:

“It’s odd that Wright would argue so strongly for supports given that, according to the Autistic Self Advocacy Network [their statement on Autism Speaks is here], her own organization in 2010 devoted only 4% of its budget to “Family service” grants. And Autism Speaks’ track record on inclusion of the very people it claims to represent was limited, at best, and now has returned to nonexistent.”

I am trying to be more respectful of the wider community of voices and generally I do a pretty good job of it. But I can’t help but take pleasure in reading Emily’s Forbes-worthy critique of the “science” and untenable position of Autism Speaks.

Autism Organizations: Which Ones Do You Trust?

  • Posted on July 30, 2012 at 8:00 AM

There are many autism organizations out there—from ASAN to Autism Speaks and all sorts of organizations in between and among them.

They all have their own agendas, their own missions, their own purposes. They each behave differently, though there are similarities. Their memberships are different, though there are similarities.

Which ones do you trust and why?

Up until now I’ve steered clear of joining any organizations, because there are often legitimate voices criticizing each one. I did my stint in politics before my children’s diagnoses and my experiences destroyed my faith in the integrity of political organizations. It is far too easy for political organizations to lose sight of their original agendas, to play lip service to those agendas, while directing the efforts of the organization into some expedient side-road. And that’s for those organizations with legitimate goals in the first place.

I’m not sure I’ll ever go back on that decision. But membership—that commitment—isn’t the only form of participation. Still, it’s difficult to know which organizations are worthy of becoming an ally and which organizations are too vested in their own self interest that they act at the expense of the causes they proclaim to support, the causes that are their public reason for existence.

So, which autism organizations do you support and why? How do you show that support?

Why It’s Not Okay

  • Posted on January 2, 2012 at 8:00 AM

Sharon of The Tumultuous Truth recently posted about Alison Singer in response to this and this

I remember watching “Autism Every Day,” knowing in advance that it would be a problem for me.  I was warned.  But it was worse than I had imagined.  (No, I’m not going to link to it.)

At the time, I was struggling.  Raising three children with autism, even with adequate supports, is difficult.  When there are problems with the supports or the supports are inadequate, it’s worse—a lot worse.  I’m not one to minimize that.  Nor is it wrong to express that.

BUT…and this is a big, huge BUT

It’s one thing to express frustration, to express our feelings of being overwhelmed, our feelings of betrayal, our feelings of inadequacy and all those negative feelings that go along with them…and it’s a whole different thing to fantasize about killing one’s child.

AND…another big one…

It’s yet another thing to tape record ourselves fantasizing about killing our children for a viewing audience to raise funds for…well, for anything.  I don’t care if you’re raising funds for Murders Anonymous (to my knowledge there is no such organization, but then again society has yet to cease to amaze me), you just don’t do it.  Not if you’re an ethical person, not if you’re a loving parent.

Why not?  Really, if you need an answer…  [grumbling to self]  Because murder is wrong.  Because murdering an innocent child is especially wrong.  Because murdering your own innocent child is even more especially wrong.  Because fantasizing about murdering your child brings you one step closer to actually doing it.  Because publicizing your fantasy is actually advocating that mind-space.  Because advocating that mind-space could lead to other people—people who are mentally ill and not altogether reasonable—thinking that mind-space is safe, justified, and right.

I must admit that I cannot imagine what it would take to fantasize about murdering my children.  I cannot imagine it.  I cannot imagine the mind-space Alison was in when she thought about that.  I cannot imagine the mind-space of the people who’ve followed through with their gruesome fantasies.  I have had some very low points.  I know despair.  I really, really do.  But even at my lowest point I never once fantasized about killing my kids.  I cannot even imagine it.

My advice for people in that mind-space—seriously without any humor or any sarcasm—is this:  GET PSYCHIATRIC HELP NOW!!!  You know that moment that you realized—however it happened, whatever triggered it—that something was wrong (or “wrong”) with your child, that your child’s development was atypical, that you needed help to raise your child.  If you fantasize about murdering your child, then you need to realize that there is something wrong with you and get the help you need.  If you are having such fantasies, you have to realize IT’S NOT ABOUT YOUR CHILD, you have to realize IT’S ABOUT YOU!!!  There is something wrong with you.

Believe me, anything—yes anything—is better than murdering your child.  If you do that, your child’s life is over.  Done.  There’s no coming back.  There’s no recovery.  There’s no hope.  (Yes, I’m a Christian and I believe in the resurrection after death, and YES I’m still saying that, because you have NO RIGHT to send your child to heaven.  God put your child on this earth for a purpose and YOU HAVE NO RIGHT to thwart that purpose by murdering your child, whatever your reasons may be.)

Consider the possibilities:  If you have to put your child in a horrible school (Alison’s trigger), you can do something.  You can advocate for changing the school, you make money to send the child to a private school, you can learn how to homeschool your child, you can move to another state or another country, you can DO something.  If you kill your child, it’s OVER.  You can’t do anything to help your child.

If you’re not getting the services and support you need, you can do something.  You can advocate for change, you can ask family, friends, neighbors, hell even strangers for help.  You can knock on the door of every agency in your county until you get a lead.  You can apply for grants.  You can build your own support network.  You can DO something.  If you kill your child, it’s OVER.  You can’t do anything to help your child.

If you really can’t handle your child (or feed your child), then give your child up.  Put your child in foster care.  As horrible as foster care can be, it’s better than being DEAD.  Even if the child will end up in an institution, being in an institution is better than being DEAD.  Your child can recover from an institution.  There are people who are working to change the system and help children just like yours.  You can take your child out of foster care when you’re better.  You can DO something.  There’s a course of action, a way to help.  If you kill your child, it’s OVER.  There’s no next step.  You can’t help your child any more, nor can anyone else.

If you are fantasizing about murdering your child, then I see two possibilities:  Either you’re experiencing some kind of mental health issue or you are evil.  Chances are it’s the first one.

Despair is not an excuse for fantasizing about murdering your child.  Despair is certainly not an excuse for doing so on an internationally distributed video that makes it seem like it’s okay to murder autistic children.

Mental illness is not an excuse for fantasizing about murdering your child.  Mental illness is certainly not an excuse for doing so on an internationally distributed video that makes it seem like it’s okay to murder autistic children.

There is no excuse for that kind of behavior.  There’s no justification.  There’s no reasonable explanation.  And, by God, I hope that Alison has apologized to her daughter, because that’s what loving parents do when they’ve hurt their children.  I also hope she finds it in herself to apologize to people with autism and to the world at large.

Now, back to Sharon’s post, I won’t write Alison off.  I won’t write her Autism Science Foundation off.  There is the possibility of redemption.  There is the possibility of forgiveness.  There is still the possibility to do some great good for people with autism.

But I won’t excuse her behavior either.  What she did was wrong.  There is no justification for it.  There are no acceptable excuses.  Her behavior was WRONG!!!  Her words hurt people—real people with real feelings.  She can’t explain it away and expect the people she hurt to just let it go.  I can’t just let it go.  I won’t.  Not until she admits that what she did was wrong and apologizes.  Because that’s what ethical, responsible people do.

Retraction: Interview with Stephen Roberts from The Dark Fiction Spotlight

  • Posted on January 10, 2011 at 1:02 PM

On October 26, 2010, I wrote a scathing post about The Dark Fiction Spotlight for hosting an autism anthology that stated in the guidelines, “Anything that will offend Autism Speaks will offend me and will not be considered.”

I didn’t really expect a response from the magazine.  I certainly didn’t expect the response that I received from Stephen Roberts:

I stumbled upon this blog by chance and it pains me that this is the image you’ve gained of myself, my associations and my magazine, The Dark Fiction Spotlight.

I wish to tell you about the autism anthology that will never be. 

[You read the rest of the comment here.]

Well, to say the least, this required a retraction.  But I was curious.  I wanted to know more.  So, I contacted Stephen Roberts, and was granted an interview.

You stopped participating in the autism anthology you were working on with Autism Speaks.  Where did this project come about and what ultimately made you make the decision to pull out of the project?

Well, to be honest, I’m new to the politics and such of autism. All I knew was what I learned from my nephews as I watched them grow. I was tapped by a publishing company preparing to launch that was to be run by a good friend of mine and she said she wanted to do the occasional charity anthology, to which I immediately thought of autism and my nephews.

Once announced, I received a great deal of support from the literary community, but also an outcry as to whom I’d associated myself with and more so my nephews, as they were to be involved in the cover art.

I immediately hit the web and started looking up every forum on autism I could and I found out that autism speaks.org didn’t represent my views on autism to say the least.

You are still interested in pursuing a similar project.  What are you looking for in recipients to the funds you raise?

I would still love to do something to help out the families touched by autism, namely the education of children and even the continued education of adults. I have found that many people write off those with autism, whereas all they need is a bit of patience from us to show us how brilliant they are.

I’m open to collaborate with somebody that has the vision and perhaps even the connections to get the funds earned to the proper place.

I also feel like we need more sites that represent the community of those touched by autism and not just the same biochemical explanations. More communication, less misinformation.

You are helping your sister raise your nephews, who have diagnoses of autism.  How has that changed or shaped your views on autism? 

Frankly, I knew little to nothing about autism several years ago, but when my oldest nephew was diagnosed (he’s 8-years-old now, his brother is 6-years-old), I sort of understood it, but mostly just did what I had to do for them on a day to day basis. I know their autistic, but to me they’ve never been “special” or hindered by anything.

I guess we (my family) must be doing something right, as their schools consider them to be gifted and they grow both socially and academically in leaps and bounds. 

What do you consider the most important areas for research in autism?

Again, to me I believe it to be all about education. Isn’t it a magical idea that my nephews could be given a shot that would immediately “fix them”, giving them perfect speech and altered personalities?

I do not mean to insult anybody on their views, but I just personally feel that education is key to the benefit of an autistic child as to ensure a healthy and prosperous adulthood.

I’m always open to learn more about the study of autism and welcome all opinions and websites to learn from.

If you had the opportunity to interact autistic adults, what would you most like to learn from them?

 If I could ask anything, it would be what I can potentially look forward to in the growth of my nephews. I’d love to know their views on the political stances taken on autism and the politicians who seem to be asking everyone but them.

I know that autism doesn’t make you “slow” or anything to the like, but in fact simply one who views this world from a different perspective. That’s something special in itself and anybody should want to converse and learn from them.

I hold my nephews to the highest of standards as far as their futures go and I’d just love to be able to know the stories of others and what they’ve achieved as individuals. Much like how a high school student might want to know what to expect in college, I’d just love to see what’s next. 

What change do you consider most important in how we, as a society and a world, address the challenges presented by autism?

I think we all just need to listen more. For one, I think that the whole puzzle piece symbolism is absolutely insulting. I don’t know if this is the consensus of the community, but once I really thought about it I didn’t like it. It implies that they’re not human or just don’t fit with us as a society.

What I’ve seen with my nephew’s teachers is that patience is key; all students are different, but they will tell you what they need if you’re willing to listen. No assumptions, no exceptions. 

For my readers who also write speculative fiction, can you give any tips on how to break into The Dark Fiction Spotlight?  (Also, do you have any idea when submissions will open again?)

Well, I wouldn’t say it takes much more than a love for your craft and the darker side of fiction to fit in with us folk. We’re open to most concepts as long as it’s dark in nature and the only thing we do not like are those who don’t take writing seriously.

We as a group do not believe in writing to be a hobby anymore than it is a talent to be born with. All the best writers I know don’t sleep some nights as their so obsessed with their craft.  Unhealthy? Perhaps. Does it pay off at times? Yes.

But all in all, Daniel, Stacy, Thadd and I are pretty easy folks to work with, at least I think so.

Unfortunately The Dark Fiction Spotlight is on hiatus, but not in a negative sense. We’re developing a solid game plan to take our 4theluv/contest money e-zine and evolving it into a print/digital magazine at pro rates. This is something we take very seriously and do not wish to rush just yet. We’re also considering anthologies, contests and things to the like on the site until said launch, so please do keep in touch with us and or visit the site to see what’s going on.

The site:

www.thedarkfiction.com

TDFS submissions/query e-mail:

tdfspublication.subs@gmail.com

While I cannot apologize for my gut reaction, I sincerely apologize to Stephen Roberts, The Dark Fiction Spotlight, and my readers for not researching the proposed anthology more extensively.  I know I’ll be check in with The Dark Fiction Spotlight from time to time, and I hope you do as well.  And I hope Stephen Roberts gets to edit the anthology he was hoping for!

Offending Autism Speaks

  • Posted on October 26, 2010 at 2:16 AM

Okay, so I didn’t intend to take a break from my bullying series until I’d finished with it.  But, I think this is worth it.

For those who don’t know, I am a professional writer—a professional writer at the beginning of my career, but a professional writer nonetheless.  I write full-time.  I make money.  I have been professionally published.  I’m writing two novels and a non-fiction book, along with many other shorter projects.  I market my skills to local businesses (and sometimes not-so-local businesses) and I get paid well for my work.

My point is that I have many interests.  One of the interests I’m resurrecting, after years of studying business, is my fiction.  I’ve neglected my fiction sorely over the last decade of child-bearing, autism-diagnosing, and degree-getting.  Now it’s time for that passion to be re-born.

While I make some effort to keep my variety of interests separate, there is some overlap.  The main character of one of my novels is rather Aspie-ish.  (Though, I’m not going to call her an Aspie—if, for no other reason, then because she’s a fairy.)  My other novel, which is being co-written by a friend of mine, has strong “outsider” themes.  My non-fiction book melds my interests in autism and business and confronts one point where those interests overlap.

Then, there are other, less pleasant, intersections.

I receive many newsletters for writers, including Writing World.  I scan the articles and choose which ones I’ll read in detail.  One I chose to read in detail was about dark fiction markets, written by C. M. Saunders.  This article recommended The Dark Fiction Spotlight as a token-paying market that publishes dark fiction.  So, I checked it out.  As I was scanning pages on the website I found a sub-tab called “Anthology for Autism.” 

Hmm, I thought.  Now, that could be cool!  I have an idea of for a short story that is both dark, science fiction and involving an autistic main character.  The story isn’t written; it’s one of many projects that has been postponed due to time-constraints.  But, I figured if there’s actually a market for it…

So, I started reading about this anthology, and it starts with:

About Autism Speaks:

Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Since then, Autism Speaks has grown into the nation’s largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. We are proud of what we’ve been able to accomplish and look forward to continued successes in the years ahead.

Oh, dear.  It didn’t look quite so promising any more.  But, I kept reading.  Maybe they’re open-minded.  But, then…

I repeat:

Anything that will offend Autism Speaks will offend me and will not be considered.

Honestly, my story would definitely offend Autism Speaks.  And, frankly, I wouldn’t have it any other way.  I remember trying to interview someone at Autism Speaks once.  It didn’t go well.  It wasn’t even an advocacy piece, but that didn’t matter.  Even a piece designed to inform parents of their information options offended the Autism Speaks representative I spoke with.  They were only willing to participate if they had full control over what I wrote, which is an ethical no-no in the journalism world.

So, I took a break from my bullying series to warn my fellow speculative fiction writers and autism advocates that The Dark Fiction Spotlight or Lady Luck Publishing might not be publishers you want to patronize or write for.  As much as I hate to write off potential markets, I won’t be pursuing any opportunities with them.

* * *

For those who read this blog and don’t already know, this last part provides reasons why such an affiliation with Autism Speaks requires me to boycott this company and it’s zines.

In a sense, all of this is about bullying. 

Autism Speaks claims they exist to advocate for families with autism, but only 4% of the donations goes to those families.  They fund research, and one of their major projects seeks a way to diagnose autism in utero, which is a form of eugenics.

That is why I disagree with Autism Speaks’ agenda.  But that, in and of itself, does not warrant boycotting (though it is why I would not donate to their organization).

Autism Speaks goes even further than this.  Autism Speaks is an organization that intentionally spreads fear and despair.  They use advertisements that amount to hate speech against autistics.  They encourage parents to fantasize on camera about killing their autistic children, and use this as a reason why autistics should be eliminated from society.

They use “Autism Speaks” as their name to claim that they speak for autistics; they don’t.  Autistics can and do speak for themselves, like these protesters.  On the site for the anthology, there’s this branding slogan: “Autism Speaks. It’s time to listen.”  Autistics, in return, says: “Autism Speaks needs to listen.”  Instead, Autism Speaks actively tries to silence those not in agreement with their eugenics agenda.

If this wasn’t bad enough, they engage in unethical business practices.  They mislead donors as they raise funds for their research.  They try to control media elements, as they did when I tried to interview one of their representatives.  And they bully their way through politics and the social landscape.  Their message is clear:  If you don’t feel bad (or even homicidal) about having an autistic child, then there’s something wrong with you, because autism has stolen your child’s soul.  (Yes, the soul-stealing is paraphrased, but with their very words one of their representatives has used.)

As an organization, Autism Speaks is a bully—a well-funded, politically powerful bully that believes that eugenics is the solution to autism.  And that offends me.  They use their size and their wealth to attempt to stomp out disagreement.

And they create anthologies where one point of view is all that can be expressed, because they don’t want their audience to become aware of differing points of view.

That offends me.  Autism Speaks offends me.  As a business person who believes in ethical business practices and as a parent of three children with diagnoses of autism, Autism Speaks offends me.  And I cannot write honestly and not offend them in turn.

I wouldn’t change that even if I could.

Autism: The Musical

  • Posted on October 3, 2009 at 12:00 PM

I thought “Autism: The Musical” was old news.  At my brother’s request, I borrowed a copy of this movie through Netflix to coincide with my brother’s visit while he was working on a project to design a sensory center (he’s a student of architecture) that would, should it ever be built, meet the diverse sensory needs of children with autism while also removing averse sensory stimuli from the building’s design.  The research he conducted while he was here included long conversations with me, meetings with some of our service providers, and watching this video to get reactions from my mom and me.  Time is only a passing acquaintance of mine that leaves few discernible marks in my memory – meaning I don’t know when this viewing occurred.  However, it was months and months ago.

Autism: The Musical was released in April, 2007, and seemed like “old news” when I watched it.  Now, over two years later, it’s still having a newsworthy impact.

“I cannot make people value my daughter,” one mother said, while speaking of her child during an emotional showing of “Autism: The Musical” on Sunday.

That one quote quickly became a talking centerpiece at the event.

Honestly, I don’t remember the entirety of my reaction to this movie.  I do know there were some parts I considered seriously controversial.  I also know that Autism Speaks posted this description:  “As it follows their journey, the audience not only better understands the nature of what autism is, but celebrates the joyful spirit of each child.”  Not without irony.  I also remember that it provided an excellent platform for my brother to experience the diversity that is autism beyond what my three unique little boys can provide.

What I also know is that Autism: The Musical supports getting involved in Autism Speaks, Cure Autism Now, and the (seemingly out-of-place) Miracle Project.

If it serves as a vehicle for communicating the value of autistic persons, that’s pretty good news.  However, I can’t help but think valuing autistic persons and curing people of autism are conflicting paradigms.

Bev and Bruce Say It Well

  • Posted on September 30, 2009 at 1:16 AM

Asperger Square 8 has a new post definitely worth reading.  Beautifully written and deeply meaningful, Bev addresses the news that Bruce Springsteen will be performing a benefit concert for Autism Speaks.  While her entire post is worthy of a good read and a good cry, I want to respond to these words:

Those who defend Autism Speaks will tell you that people with “real autism” can not speak for themselves. Some will go so far as to say that these “real” autistics cannot communicate at all.

My son, Alex, is one of these “real” autistics.  He does not speak, at least not in the sense that his vocalizations consistently and effectively communicate.  However, that does not mean he does not communicate, though it does mean he can be difficult to understand.

Yesterday, I was speaking with Ben’s therapists who were playing with Ben in his room.  We had plumbers over doing smelly things in order to bring our upstairs bathroom back to life – without the constant sluicing of our kitchen cupboards.  So, to release the smelliness we had the windows propped open.  One of the things I used to prop open a window was a box (100+) of crayons that were upstairs as part of Ben’s therapy supplies.  Alex saw the box of crayons and wanted them.  Alex loves to color and he goes through crayons rather quickly and removes the paper and breaks them into smaller pieces for his own, unknown reasons.  So, Ben has his own crayons that haven’t been Alex-ified.  And now Alex wanted them.  After all, he hadn’t had new crayons in two whole weeks.

I told Alex I had other crayons for him and these were Ben’s.  Alex accepted that answer and we both went downstairs, and I went all the way to the basement to get a little work done.

A few minutes later, Mark came down with our merry little catch phrase: “Just in case you didn’t know, our kids are weird.”  This is not said to be derogatory.  It’s just one of the things we say to capture the chaos that is our lives.  It could just as easily be me saying, “Just in case you didn’t know, my brain is weird,” with me then launching into one of the strange places my thought patterns had taken me this time.  So, Mark came down to describe an oddity to me.

This time it involved Alex, who regularly leads people to things he wants in order to communicate.  Alex took Mark by the hand and led him to the living room (which happens to be by the stairs that lead up to Ben’s room).  Then, Alex pulled Mark across to the other side of the house to get a piece of paper off the pile in the den.  Then, he pulled Mark back to the living room.  Knowing nothing of the exchange Alex and I shared moments ago, Mark was understandably baffled.

I knew exactly what Alex meant, however, so I handed Mark the box of new crayons I had tucked away for Alex.  Then, Alex contentedly peeled, broke, and colored away for most of the evening.

It certainly would have been easier if Alex could have said, “Dad, Mom said I could have new crayons and I would like them now, please.”  But Alex cannot say that.  That does not, however, mean he cannot communicate it.  The key to communication is not what you say, it’s what the person you’re trying to communicate with hears or observes.  Because Alex communicates in a way that is difficult for others to “hear,” we often need interpreters to understand him.  In this case I was the interpreter, but other times I’m the one who needs the interpreter.  Someday, when he’s ready, Alex will try to communicate with a bigger audience.  Hopefully there will be people willing to “listen” no matter how he is tries to communicate.