Number of people who have watched Autism Every Day on YouTube: 715,189
Number of people who watched it yesterday: 407

Dear Peter Bell, Pat Kemp, and Marc Sirkin at Autism Speaks;
Dear Lauren Thierry, Eric Solomon, and Jim Watkins;
Dear Alison Singer and Katie Wright;
 

My name is Landon Bryce, and I run a website for the Autism and Aspergers community called thAutcast.com.  Part of what I do to find material for my site is search daily on YouTube for "autism."  And it always bothers me that the first video that comes up is your 2006 film Autism Every Day.  I am going to be writing to you to ask that you help take this video down, but my purpose in this first letter is tell you that I understand that Autism Every Day does do some very good things:

1.  It allows parents of children with autism to see the painful and difficult aspects of their lives in a vivid and powerful way.

2.  It encourages sympathy and understanding for those parents.

3.  It gives voice to parents of children profoundly disabled by autism, a group of people often ignored by both the media and self-advocates.

4.  It shows a brutally difficult life in a brutal way.

I asked my friends to watch it and describe their feelings, because I knew they would do a much better job than I could of describing both the positives and the negatives.

Kai has autism, and he likes the movie very much:

I watched it and I don't see anything wrong with it. My mom went through the same battle those mothers went through but without the aid of all the autism awareness we have today. It is a battle because autism isn't simply an individual who sees the world differently. In a lot of cases it's a debilitating developmental disorder.

It used to be autism meant the more extreme forms. But now with the spectrum, which was a good change imo, but with that change in definition we've forgotten a lot about the pervasive developmental disorder aspect of it and think more aspergers and ask "why would we want to battle against that they're just different?"

But no, for a lot of people it truly is a battle. I still remember a lot from when I was a little kid and I remember how difficult I made it for my mom, not intentionally but I remember what it was like to be one of those kids in the video. It's not only a battle for the parents but also for the autistic people. It was a battle for me all my life.

I don't know if the alleged problem with this video has to do with it having a negative view of autism. But I think it's the honest truth which sometimes makes us uncomfortable. Those moms face real serious problems and they are human. They love their children beyond words but anyone who has lived life can understand that being the limited humans that we are it takes its toll and they really will feel like "I wish I could have a bagel, BUT..." That's not bad, it's candid.

Not surprisingly, especially since the majority of the peope, who use my site are parents, several of them saw their own pain reflected.  Dee said:

As a parent of three with ASD I can see why the Mother's come off as bitter and stripped down. However, parenting children with autism is such an emotionally draining experience as well. We are in a constant state of guilty turmoil; it really is a love/hate situation. Attack me if you will, but although it's no fault of our children, being the parent of autism is a shattering and unexpecetd experiemce.

Loving your child and fighting tooth and nail for them is what we all strive for; but if we weren't honest about our cracks as well as our heroism we'd be disingenuous. I put down the books years ago, I know my kids, my heart still breaks every time they aren't included in a birthday invitation.

I have three high functioning auties and am blessed they can articulate often what their world really is, but to negate the parents because we admit "it's hard" is doing a disservice. It's fucking hard. Accept our experience and perhaps we might not be so offended when your decide to rip us a new one for being openly human.

Katie said:

I think that people that think that parenting an ASD child is like any other child haven't had an experience parenting an ASD child. I see that video as honest. Our family's days between my son's 2nd and 3rd birthdays were heartbreaking and wore us all down. I had to give up my career because no day care would take him, we qualified for no respite, got hardly any hours of therapy (and of course were broke enough to not be able to afford anything else). He screamed nonstop at least 3 hours straight every day, to the point where we had to have several neurological tests run because they were so extreme and severe. If you've never had to be locked in a house with a child screaming at the top of their lungs for 3 hours, turning purple, when your job is to help them and you can't, you can never understand that heartbreak.

The video is not meant to be offensive. It's the reality of many, many parents. Parents should not feel guilty for being drained. Parents of CP kids, down syndrome kids, etc are 'allowed' to want remedies and better for their kids, and are 'allowed' to feel guilty openly without being further kicked down by others... but autism is somehow different.

You get what you get, you do your best. But sometimes you need to vent, and that does not mean that you don't want better for your child (*for your child* being the key here!). 

Autism Every Day tells some easily ignored truths in a very powerful way.  So why am I asking that come down?  

I'll explain, or rather let my friends explain, next time.

Yours,

Landon Bryce

P. S. To readers:  I still need your comments, positive and negative on Autism Every Day.  Please watch it and tell me how it makes you feel.

What does this movie make you feel?

The smart, cool people in the autism world have mostly forgotten about Autism Every Day.  This 2006 film caused a lot of stir, mostly negative in the autism world when it debuted, but people have pretty much moved on.

I think that's because they don't search for "autism" on YouTube every day like I do.  They don't see that Autism Every Day tends to come up at the top of search results, or that hundreds of people watch it every day.  This seven minute movie has had a long life.

And I want it over.

It's not like Autism Speaks can't do this-- they pulled the heinous I Am Autism video-- try to find it online now.  They can make this one go away, too. 

So I am going to ask you to do two things for me:

1.  Watch Autism Every Day-- It's embedded above or watch it here.  This is not an easy task, even if you've seen it before.

2.  Write down what the movie makes you feel, and send it to me.  Or draw a picture or make a video or whatever expresses you best.  Or, if you've written something before, or want to write something for your own blog now, send me a link.  Or if there's something online that someone else wrote or made that expresses how you feel, send me a link to that (just make sure it's clear to me that it's not your own work.)

I will be using your comments to write a series of open letters to Autism Speaks and the makers of this film.  Unless you tell me otherwise, I will identify you by first name only when quoting you.  I am happy to use your full name or leave you completely anonymous, but please let me know that that is what you prefer.

I will consider any comments made here or on the Facebook page as for for publication, unless you specifically say otherwise.

Thanks for your help!

Landon

Asperger's Are Us hates Autism Speaks, and they are doing a show Thursday night!

I laughed out loud last week when I read two severely differing opinions about Autism Speaks.

Kim Wombles, the pro-science autism mom who helps run the Autism Hub, wrote how despite her initial hesitance about the organization, it has grown to be an important part of her life:

And then we walked. Rick, Bobby, my father and I volunteered at the walk itself. I headed a team for my college, and I organized student volunteers, and we walked. We watched all those faces. We saw 2500 people come to that walk and have an incredible day. And a lightbulb clicked on. This was technically a fundraising event, and it cost money, money that will show up in the 990. It was also a community event. It was a service to families. It was, to steal from those ridiculous credit card commercials, priceless.

Asperger's Are Us, the comedy troupe made up entirely of young men with Asperger's syndrome, said this about the organization in a recent interview:

N.B.: What else do we need to discuss? Oh yeah, we hate AutismSpeaks. It’s run by neurotypicals who want to eliminate autistic people, and they’ve consistently refused autistics’ offers to help in any way.

E.F.: AutismSpeaks is like the Klan holding a fundraiser for black people.

N.B.: No, it’s like the Klan running the NAACP and not letting any black people in. Well-meaning people donate to them (they’re the fastest-growing charity in the country right now), because people hear about autism and then they don’t know what to do. But AutismSpeaks really is the worst place you can donate money to if you want to help autistics.

When I heard John Elder Robison speak in San Francisco, he said he thinks Bob and Suzanne Wright, the founders of Autism Speaks, are like racist grandparents: you can still love them and appreciate what they do for you while recognizing that some of their opinions are bigoted and unlikely to change.

I fall somewhere in between John Elder, the only person with autism who has ever been allowed to play a role of any significance in Autism Speaks, and Noah Britton, the N.B. of Asperger's Are Us.

And then there's the money thing.

Kim makes some excellent points in her piece about how Autism Speaks provides services to families that are technically fundraising, and that distorts their financial image.  And, sure, it's true that there are overpaid staff in many major nonprofits.

But Autism Speaks spends a great deal of money on fundraisers that do not involve people with autism to any degree.  And their staff has been among the most overpaid, and they have had a horrible record on where their money goes, and they haven't, to my knowledge, come up with any hard figures to show that that is changed.

I think it's pretty obvious that the highest priority for the people who run Autism Speaks is to enrich and make famous and fabulous the people who run Autism Speaks.  Everything else is less than secondary.

And it makes me mad that Kim excuses Autism Speaks because it's such a young organization, and John Elder excuses its bigotry beause its founders are old.

I can't understand why anybody ever gives a penny to Autism Speaks.

What Alison Singer looks like to me

If I search for "autism" on YouTube, the first video that comes up is "Autism Every Day."  Please let me know if your results are different.

"Autism Every Day" is a film produced by Autism Speaks before they started to hide how much their organization hates autism, and by extension, the people who have it.  In its most infamous segment, an Autism Speaks executive named Alison Singer talks about being overwhelmed by the bad choices available to her when her daughter was diagnosed with autism.  She then movingly describes her desire to kill her daughter and herself.

It's disgusting.

It also keeps killing children and keeping murders from justice..

I find it impossible to believe that Kristen LaBrie, who killed her son Jeremy by denying him chemotherapy, was unfamiliar with the top YouTube video about autism.  I can imagine Yvonne Freaney, who strangled her son Glenn, watching it over and over.  And I would bet that some of the jurors who let Freaney off with a manslaughter charge went home and watched a couple of YouTube videos to learn a little more about autism. 

The first video that comes up when you search for "autism" on YouTube tells you that it is understandable for parents to kill their autistic children.

It isn't. 

Singer left Autism Speaks and started the Autism Science Foundation because she disagreed with their stance on vaccines.  She doesn't advocate murder anymore.  Now she just peddles the myth that a cure for autism is a realistic hope.

It isn't.

Not in the lifetime of anyone currently alive.

What is possible is that we will have prenatal testing that will identify fetuses who are likely to be autistic, so that parents can have the option of deciding to abort those children.

That's not the same as a cure for autism.  And it's not going to happen soon, either.

Our understanding of neurology is in its infancy.  Truly.  Most of what we are learning about the brain tells us that it is more complex than we had previously imagined.  The same is true of autism itself.  We are decades from understanding autism and the brain well enough to know what would need to happen in order for an autistic brain to be "cured."  It will take decades after that to develop the necessary technology to develop affective treatment based on that knowledge.

Anyone who tells you something different from that either does not understand the research very well or is trying to mislead you about it.

Autism Speaks and the Autism Science Foundation want your money.

So they lie to you-- not about the significance of the research they fund-- but about how close it is to being of any practical value for any autistic person currently alive, unless their focus shifts away from eradicating autism and toward support and treatment.

I've lost a little respect for Left Brain/Right Brain because of Sullivan's willingness to promote Singer's press release, begging for your money because she is going to ride on the back of somebody's motorcycle. and intimating that a cure is within reach:  

Having just returned from the International Meeting for Autism Research, I am more optimistic than ever that we are on our way to finding new treatments and eventually a cure for autism, but there is still a lot of work ahead of us and we need your help. 

That's fundamentally dishonest.  It's peddling false hope like Andrew Wakefield.

Worse than that was the defense mounted by Kev for the initial post. After acknowledging that many people find the idea of a cure offensive, he writes this:

There are those autistic people who do want a hypothetical cure. For those, we are duty bound to look for one.

So it's okay to promote Alison Singer's lies that a cure is feasible, because people would like it if it were.  It's okay to suck up all the money people donate, intending to HELP people with autism, and spending it all on voodoo instead.

Alison Singer still hurts people with autism every day, by stealing resources that need to be used to help us today.

Do not ever donate any money to any organization she has ever had anything to do with.  Do not treat people who tell you they are zeroing in a cure for autism with any more respect than you treat someone who wanted you to send them money to help fund their research to harness the awesome power of Santa Claus.

Please.

Autistic self-advocate Paula C. Durbin-Westby was not impressed when Autism Speaks' chief science officer Geraldine Dawson insisted at the White House event for autism last week that autism is a disorder:

A disorder is not a person.  A disorder is a collection of “symptoms” or “undesirable” conditions or traits.  A disorder doesn’t have a body.  A disorder doesn’t have a mind of its own.  A disorder can’t be a child, perhaps a child in need of protection.  As such, a disorder does not have any rights under the DD Act or any other act.  Only people do.  A disorder can be “combatted,” “cured,” “prevented,” and “eradicated” in any manner that researchers and others see fit.  Autism Speaks has a habit of depersonalizing autism (remember the infamous “I… Am… Autism…” video with the creepy disembodied voice?) in order to justify eradication and prevention.

There is one problem with all this, and is the reason I think Geri Dawson’s comments are concerning and also very telling of Autism Speaks’ continued focus in eradicating autism.  Those disembodied disorders?  They are actually part and parcel of people, people with bodies, with brains and minds, people with disabilities. Every “cure,” “treatment,” and other intervention is not actually carried out against a disorder. It is carried out on and sometimes in, the bodies of real people, including children.  Disability is embodied.  It cannot be separated from the person who has it.  Every attempt to eradicate a disorder has to be balanced against the fact that the disorder is carried within a person.  Not so disembodied after all, creepy voices or tragic rhetoric notwithstanding.