Autistic swimmer Hunter Devilice wins varsity letter.

There's been a facinating exchange at Liz Ditz between Kassiane and a representative from Autism Speaks about the fact that the organization has used her words without her permission and failed to completely remove them when asked.

Dude, I'm an Aspie on chat problems.

A boy's parents claim he has been denied communion because he has Down syndrome.

Todd Drezner talks about nickels, dimes, and autism:

Why does the autism community continue to obsess over categorizing people as high or low-functioning? It's true that the needs of one autistic person may be very different from the needs of another, but that doesn't mean that they have nothing in common.

As Justin Canha's story shows, the autistic person who needs a lot of support in one area may become a person who needs much less support in that same area. Justin barely spoke before age 10. Now he's verbal.

He didn't suddenly change from "low-functioning" to "high-functioning." Rather, he received the support he needed and developed his skills. It's nothing more than common sense to say that the story of how Justin did it is relevant to many other autistic people, even if they are currently at a much lower skill level.

Not mine alone, but mine (Click image to enlarge).

The thAut above is from the John Weidman-Stephen Sondheim musical Assassins. Revolutionary Emma Goldman says it to young Leon Czolgolz, who has asked if an idea is hers.  "Not mine alone," she answers, "but mine."

One thing I've learned, both from my domestic partner Max's successful work in the gay rights movement and from my observations of political history, is that it can be difficult for activists to acknowledge when our goals have been achieved.  And so we can keep trying to fight the same fights, even though we've already won them, rather than shifting our focus to the new battles that lay ahead of us. 

I am trying very deliberately not to do that.

I began thAutcast specifically to counter the negative ideas about autistic people spread by Autism Speaks.  It started with this video, which was a response to their 2009 short "I Am Autism":

Oh, how I hate this video-- it was made it about a day, including writing, recording, and all the rest.  Shows, doesn't it?

But it's here to point out that I've actually been doing this since 2009, a little longer than most people realize, and that countering extremely negative messages from Autism Speaks is what I started with.  Anyway, a lot of other people hated "I Am Autism" and it was eventually taken down completely. 

In the fall, I did a campaign to draw attention to the video "Autism Every Day", which was one of the first videos Autism Speaks ever produced and paints a relentlessly gloomy portrait of what it is like to parent an autistic child.  It was of great concern to me because it showed up very high in the rankings of videos on YouTube and hundreds of people were watching it daily, including, I'm sure, many parents who had just heard the word "autism" from a doctor, clicked on the first video they found on YouTube, and were told their lives were over. 

And this week I found that "Autism Every Day" has been made private on the Autism Speaks YouTube channel.  You can still find it, if you're looking for it, but the organization itself is no longer putting it forward as the first thing people should see about autism.  If the situation stays like this, one of the major goals of my site has been reached.  The worst of the Autism Speaks messaging about the worthlessness of people like myself has been removed from the spotlight.

I led with the quote above because I need to make one thing extremely clear-- I did not make this happen.  thAutcast as a group did not make this happen.  But we did play a role.  Not the most important role, but I think if I had not been loud about how much traffic "Autism Every Day" was getting a few months ago, and if you had not amplified my concerns, it might still be the top YouTube video when you search for "autism."

It could be made public again at any time, but for the moment the way that I relate to Autism Speaks needs to change.  I will still write about why you should not support it, but I will be able to do so in a less polemic and extreme way. 

Autism Speaks is a bad idea.  It is not led by bad people.  It is led by people whom I believe to be both well-intended and extremely misguided.  Without "Autism Every Day" leading the way, the ways that the organization  attacks the value and self-worth of autistic people are not less dangerous, but they are more nuanced, and they require a more nuanced style of counterattack. 

So that's where I will try to go.

So, yeah.  Peter Bell of Autism Speaks has been appointed to the President’s Committee for People with Intellectual Disabilities.

The Autistic Self Advocacy Network objects:

“Bell’s appointment shows such contrast to the forward motion the Obama administration has shown in the areas of autism and disability as a whole,” said Melody Latimer, ASAN Director of Community Engagement and an autistic parent of autistic children herself.

Bell, Executive Vice President of Programs at Autism Speaks, has a long history of supporting anti-vaccination related causes, dating back to his time as President and CEO of Cure Autism Now, which merged with Autism Speaks in 2007. Despite wide ranging scientific evidence to the contrary, Bell and others in the anti-vaccine movement have long maintained the existence of a link, a position viewed as irresponsible by many public health advocates.

My friend Marc Rosen has started a petition to oppose Bell's appointment:

Through his work at Autism Speaks, Peter Bell has made a career out of promoting the concept that autistic people should be objects of pity, fear, and derision. He and Autism Speaks have advanced the belief that we are inferior to non-autistic people, and worse, that we are somehow a threat to everyone around us. He continues to stand for the "hope" that autism will one day be, in the words of Autism Speaks founder Suzanne Wright, "...a word for the history books."

I would also add that before he because a full time professional autism dude, Bell was a marketing executive for Johnson and Johnson, the makers of Risperdal.  He has continued to advocate for the medically dubious use of that and similar drugs for autistic children since leaving the company, as he did when it was approved for use with children in 2006:

According to Peter Bell, president and chief executive of Cure Autism Now, a national organization committed to accelerating the pace of autism research, the approval is "an extremely positive sign."

It signals, Bell said, that the pharmaceutical industry is looking at autism as a future market.

"Risperdal is not going to cure every child, and it's not going be appropriate for all," Bell said, "but when used appropriately it could make a significant difference in a child's life."

Yes, making an adolescent boy grow breasts, which can happen as a side effect of the drug, will "make a significant difference" in his life.  No doubt.

I don't think it matters very much if Bell is on this committee or not, because in politics, money speaks, not autism.  And Autism Speaks has the most money to throw around.  So Bell is going to be setting policy, whether it is through this board or just through collusion with Allstate Insurance executive vice president Mark LaNeve and other people who view people with autism and especially their families the way Bell does:  as a market to exploit.

Stephanie Rochester, who killed her 6-month-old son, was found not guilty by reason by insanity yesterday.  When she killed Rylan, she told authorities that it was because he had autism.  However, yesterday in court, her delusions were depicted in much more colorful fashion. 

Psychiatrist Richard Martinez said she saw her son as an "alien, toxic, contaminated being" and that he "was contaminated or possessed in some sense."  The reason for this is obvious-- thinking her son was autistic was not sufficient legal justification for murder:

To be legally insane under state law, a defendant must be so "diseased or defective of mind" that she cannot distinguish right from wrong or cannot form intent. If a defendant has a delusion -- for example, that a normal child is not meeting developmental milestones -- that would not justify a criminal action, such as killing the child, and the defendant would still be guilty under state law, despite being mentally ill.

Martinez found Rochester insane and said he believed she suffered from a "misidentification" of Rylan, such that in her mind, he was no longer her son and a human being. For example, he said she stopped breastfeeding because she believed that Rylan was poisonous to her in some way. In another instance, she thought Rylan's hand was a claw, Martinez said.

Rochester believed both that she had to kill her son to get rid of the toxicity that had taken him over and that by killing him, she would be relieving his own suffering from that toxicity, Martinez said.

Three observations:

1.  This switch from autism to a different set of delusions calls into serious question the court's choice not to allow prosecutors to have Rochester evaluated by their own psychiatrist-- she was seen only by an expert for the defense and one from the state mental hospital.  This gave prosecutors little chance to contest their finding that she was legally insane:

However, on cross-examination, prosecutor Adrian Van Nice pressed Martinez to explain why no one around Rochester realized she had these delusions and why she only expressed her concerns in terms of autism or another developmental delay.

 

2.  Rochester's husband Lloyd wishes there had been a jury trial:

Lloyd Rochester testified that his wife was an educated and self-aware mental health professional who had always appeared able to recognize harmful ways of thinking.

After the hearing, Lloyd Rochester said he was "disappointed" the case hadn't gone to a jury, and the family was never convinced Stephanie Rochester wasn't malingering or making up her psychotic symptoms. Her initial confession was consistent with her frequently expressed fears of autism, but no one in the family ever saw any indication she saw Rylan as possessed, toxic or poisonous, nor did they notice any other psychotic symptoms.

"We felt in general like the Boulder County justice system bent over backwards to protect Stephanie's rights and didn't focus on the real victim, which was Rylan," Lloyd Rochester said.

 

3.  There is a striking similarity between Rochester's second set of delusions and the way that people with autism are often depicted in the media.  We are often seen as "alien, toxic, contaminated beings."  As I wrote about a month ago:

Rochester's involvement with autistic children went far beyond the occasional encounter:

Rochester told authorities that she worked for two years as a counselor with autistic kids at Children's Hospital and "can recognize the signs of autism." She said she was convinced her son, Rylan, had severe autism.

 Children's Hospital Colorado became part of the Autism Treatment Network in 2008. 

The Autism Treatment Network is one of the flagship efforts of Autism Speaks.

We know what Stephanie Rochester's attitude toward people with autism was:

She placed a plastic Target bag over Rylan's head as he slept and then put a blanket on top of his face, the affidavit said.

"She said that she had conducted research on the computer and read that carbon monoxide poisoning deaths don't hurt and you just go to sleep," Spurgeon wrote. "She did not want Rylan to hurt."

After a minute, she removed the bag, and Rylan was still breathing. She went downstairs, according to the affidavit, and ate dinner with her husband -- drinking wine and discussing selling their house.

"She and Lloyd talked about how they wanted to have fun in life," Spurgeon wrote. "Stephanie said that she knew they would not have fun while they were caring for a severely autistic child."

It is possible that Rochester's attitude had nothing to do messages she got about autistic children from her work at Children's Hospital.  It is also possible that Autism Speaks had nothing to do with any negative attitudes she picked up there. 

And-- this is important-- Rochester was not a reasonable person.  Even if negative messages she picked up from Autism Speaks did affect her, that would not mean the organization should or could be blamed for Rylan's death.

However, that does not mean that people who are alarmed by this crime should not also be alarmed by the way Autism Speaks has talked about autistic people.

I have not written in any depth about Stephanie Rochester, the woman who killed her six-month-old son Rylan because she thought he was showing signs of autism.

The best consideration of her case that I have read comes from Emily Willingham, who discusses her own experience with postpartum depression, and the likelihood that Rochester also suffered from it:

The mother, reports say, thought she had postpartum depression and commented to friends about it before she killed her infant. It was severe enough to metastasize into a psychosis that led her to kill her child out of, according to her, a fear that he was autistic. The DA involved in the case recently elected not to try her because of her ongoing mental state. According to reports, she was obsessed with the notion that her son was autistic and that his autism would destroy her life, her marriage, her finances, and her fun. Her husband filed for divorced within days of their son's murder, and he has also filed a wrongful death suit. She was aware enough of her actions to have, according to reports, hidden the blankets she ultimately used to suffocate the child on her final attempt. The story is horrific.

The mother's work experience prior to having the baby included two years working as a counselor at a children's hospital, where she had encountered children with autism. I do not know what the attitude of the professionals or parents at the hospital were about autism. What I do know is that if she had paid attention to any one of the thousands of fear-mongering news media reports about autism, she'd've been terrified if, in her mind, her son were showing signs of it. I know that if she'd paid any attention at all to what some organizations that purport to help autistic people say about it, she'd've been terrified at the prospect. I also know that if she'd read any of the verbiage on the Internet about "toxic" children, "monsters" whose "real selves" were "stolen" from their parents, she'd be terrified. Stories purporting to describe the horrific financial burdens of autism. Stories focusing on the horrific toll autism reportedly takes on marriages and families. Stories with the angle that autism destroys lives.

Actually, though, Rochester's involvement with autistic children went far beyond the occasional encounter:

Rochester told authorities that she worked for two years as a counselor with autistic kids at Children's Hospital and "can recognize the signs of autism." She said she was convinced her son, Rylan, had severe autism.

 Children's Hospital Colorado became part of the Autism Treatment Network in 2008. 

The Autism Treatment Network is one of the flagship efforts of Autism Speaks.

We know what Stephanie Rochester's attitude toward people with autism was:

She placed a plastic Target bag over Rylan's head as he slept and then put a blanket on top of his face, the affidavit said.

"She said that she had conducted research on the computer and read that carbon monoxide poisoning deaths don't hurt and you just go to sleep," Spurgeon wrote. "She did not want Rylan to hurt."

After a minute, she removed the bag, and Rylan was still breathing. She went downstairs, according to the affidavit, and ate dinner with her husband -- drinking wine and discussing selling their house.

"She and Lloyd talked about how they wanted to have fun in life," Spurgeon wrote. "Stephanie said that she knew they would not have fun while they were caring for a severely autistic child."

It is possible that Rochester's attitude had nothing to do messages she got about autistic children from her work at Children's Hospital.  It is also possible that Autism Speaks had nothing to do with any negative attitudes she picked up there. 

And-- this is important-- Rochester was not a reasonable person.  Even if negative messages she picked up from Autism Speaks did affect her, that would not mean the organization should or could be blamed for Rylan's death.

However, that does not mean that people who are alarmed by this crime should not also be alarmed by the way Autism Speaks has talked about autistic people:

I know that Autism Speaks doesn't put out material like this anymore.  I know that Alison Singer, now president of the Autism Science Foundation, doesn't talk like this anymore.

Except on YouTube.

In the three months since I last wrote about "Autism Every Day," the video from which the clip above is taken, it has been watched over 50,000 times on YouTube.

It seems outrageous to me to pretend that this has no effect on how people with autism are perceived.  It also seems outrageous to me to leave out "Autism Every Day" when discussing the possible culpability of Autism Speaks in Rylan's death:

It's tempting when these horrifying stories about parents killing their children come out to play the blame game. Indeed, it's something we often can't resist. It's Age of Autism's fault because they present autism as so awful. It's Autism Speaks' fault because of that stupid sentence saying autism is more prevalent than  three dreaded diseases. It's everybody who has ever complained about autism. It's everybody's fault but the woman who chose to kill her child. If only there wasn't negative things written about parenting a child with autism that woman wouldn't have done that. She was mentally ill. She chose, whether she was in her right mind or not, to take her child's life. That is not the fault of anyone on the internet, although it is comforting to think so.

I agree with much of what Kim Wombles says here-- it is not anyone else's fault that Stephanie Rochester killed her son.  But to pretend that the most dangerous thing that Autism Speaks ever said is that "autism is more prevalent than  three dreaded diseases" seems dishonest to me.  If Kim wants to defend "Autism Every Day," I would love to read what she has to say.  But I ask everyone to please stop pretending it doesn't exist when writing about Autism Speaks and negative messages. At least not while hundreds of people are still watching it every day.

And, in Rochester's case, there is a much more direct link:  the hospital at which she counseled the families of autistic children is part of the Autism Treatment Network.  The Autism Network is part of Autism Speaks.  So, in her own small way, was Stephanie Rochester.

Pointing that out, and asking the people at Autism Speaks to re-examine the attitudes they display toward autistic people is not blaming them for Rylan's death.  I've tried to make it clear that I believe even in creating "Autism Every Day" their intentions were good.  But good intentions sometimes have unfortunate, unintended consequences.