Archive | Orgs RSS feed for this section

Join ASAN Seattle in Protesting the Judge Rotenberg Center at the ABAI Convention!

24 May

The Autistic Self Advocacy Network (ASAN) is organizing a protest against the Judge Rotenberg Center.

On Sunday, May 27th, the Association for Behavior Analysis International (ABAI) is holding their annual convention in the city of Seattle, Washington. As they have many times in the past, ABAI is allowing the Judge Rotenberg Center (JRC) to exhibit at their convention this year.
The Judge Rotenberg Center’s use of contingent electric shock, food deprivation, mechanical restraint and other “aversives” have been called out as abusive on multiple occations. In 2010, their practices were  declared torture by the United Nations, which then asked the US government to intervene.  Recent civil litigation has led to renewed media attention from sources ranging from the Boston Globe to Anderson Cooper’s television shows. The United States Department of Justice has targeted the Judge Rotenberg Center in an ongoing investigation of their abusive practices. For decades, disability rights advocates have worked towards one simple goal: shut the Judge Rotenberg Center down.

Still, ABAI hasn’t gotten the message: the Judge Rotenberg Center’s use of torture in the name of treatment should never be given a platform. ABAI needs to disavow the Judge Rotenberg Center and other facilities which use abusive treatments.

The Autistic Self Advocacy Network’s Seattle chapter is mobilizing to tell ABAI that when it comes to the torture of disabled children and adults, the time has come for them to pick a side, condemn the Judge Rotenberg Center and stop giving them a platform.

When: Sunday, May 27th, 2012 at 12 NOON PDT

Where: Washington Convention & Trade Center Downtown

800 Convention Place, Seattle, WA 98101-2350

RSVP on Facebook

With pending legislation in New York and Massachusetts, we are closer now than ever before to ending the Judge Rotenberg Center’s torture of our people. Please show up to the protest and invite others to attend with you.

Places like the Judge Rotenberg Center count on the world not caring about people with disabilities to survive. They count on on society’s unwillingness to open its eyes and see Americans with disabilities as equal citizens deserving of equal rights. This Sunday, let’s prove how wrong they are. Let’s make sure our voices are heard.

Sincerely,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://autisticadvocacy.org/

Autism Advocacy: Developing New Markets

23 May

Autism Speaks is hiring. You can find their job posts on the Web. Nothing surprising about that. Here is a segment from a recent job post:

Autism Speaks is the world’s largest autism science and advocacy organization, dedicated to funding global biomedical research into the causes, prevention, treatment and cure for autism. We currently have a rewarding (new) career opportunity available for an experienced Area Director – South Florida (Miami, Palm Beach, Broward) to join our growing organization.

The selected individual will be responsible for driving revenue through walks and events, strengthening existing markets and identifying and developing new markets. Must be experienced in staff management and volunteer leadership development. This position reports to the Executive Director – South Florida Chapter, which is based in Miami, FL.

Let me highlight the phrase that caught my eye: “…strengthening existing markets and identifying and developing new markets”.

Before people start talking about “big Autism” and all, that’s not really my point. More my own naivety. We’d like to think of Autism Speaks’ walk-a-thons and other fundraising as being organized by the communities. But this is a $50M a year charity. That’s just not going to happen with an all volunteer organization.

Are you happy with what the $50M/year organization does? That is another question.

Autism Science Foundation to host online chat with Jill Locke tomorrow (Friday)

26 Apr

Jill Locke is a researcher (a post-doc) at the Center for Autism Research at the U. Pennsylvania. Here is her biography from the CAR website:

Dr. Locke is a post-doctoral research fellow at the Center for Autism Research. She completed her doctorate degree in Educational Psychology at the University of California, Los Angeles. Jill worked with Dr. Connie Kasari at the UCLA Center for Autism Research and Treatment where she contributed to multiple randomized controlled treatment trials that examined the effects of targeted social skills interventions on the peer relationships and social networks of elementary-aged children with autism in the Los Angeles public schools. She created a social skills assessment tool using the Q-Sort methodology for her dissertation that investigated the differences in teachers’ and classroom aides’ perceptions of social competence in children with and without autism spectrum disorders as well as how these perceptions related to teacher-student and peer relationships.

Jill’s research interests are in social skills training and friendship/relationship development in children and adolescents with autism. She is also interested in exploring the ways in which treatment gains in intervention programs are generalized and sustained over time as well as the delivery to and sustainability of evidence-based practices in community settings.

She will be participating in a live chat on the Autism Science Foundation’s Facebook page tomorrow (Friday, April 27) at 12 noon Eastern time.

If you want an idea of what these online chats look like, transcripts are online for last week’s chat with Stephen Shore, Marcus Center Autism Research Dr. Celine Saulnier, and Yale Autism Scientist Dr. Kevin Pelphrey.

Simons Foundation announces RFA for Explorer Awards

17 Apr

The Simons Foundation is a large source of funding for autism research. They have posted a RFA (request for application) for their Explorer Awards RFA

This award program is designed to enhance our existing support of autism research by providing timely resources to enable focused experiments highly relevant to our mission. A deeper understanding of the mechanisms underlying autism spectrum disorders or potential therapeutic approaches will require investigation at multiple levels, including but not limited to studies focused on gene discovery, molecular mechanisms, circuits, anatomy, and cognition and behavior. We will consider proposals at all of these levels.

The maximum budget is $60,000, including indirect costs for one (1) year, non-renewable.

The full RFA is on the Simons website: Explorer Awards RFA

Workshop report: Regression in autism

17 Apr

Simons Foundation has an article on their recent workshop on regression in autism. Here are the first two paragraphs:

A number of studies suggest that a subset of children with autism make significant social and language gains in the first year of life, and then experience a dramatic loss of skills. As infants, these children babble and make eye contact. However, those abilities suddenly disappear. This loss of skills is known as regression.

Some research suggests that these children may be a unique subgroup within the autism spectrum, distinct from those who show more gradual declines. The question of whether there is an abrupt change in only some children with autism has become an important topic for parents, clinicians and researchers.

Simons Foundation is the largest non government source of autism research funding. They are a private foundation. Their website and blog are great resources for those who follow autism research.

It is very tempting to pull a number of quotes from their article, but instead I’d encourage readers to go to the Simons website and read the article, regression in autism.

Autism Science Foundation interview with Celine Saulnier of the Marcus Autism Center

13 Apr

The Autism Science Foundation is hosting an interview with Celine Saulnier of the Marcus Autism Center today at 12 noon Eastern Time. The interview will be on the ASF Facebook page

Autism Science Foundation fundraiser on Philanthroper

12 Apr

The Autism Science Foundation (ASF) is running a fundraiser on Philanthroper. These are short (1 day) fundraisers with small amounts ($1 to $10). Below is the text from the fundraiser.

https://philanthroper.com/deals/autism-science-foundation

“You can make a big difference with money placed in the right scientific hands.”

– Alison Singer, Autism Science Foundation

It’s Autism Awareness Month. We know a lot and a little about it. We know it’s a development disorder affecting about 1:88 people. We know it affects boys four times more than girls. We know it can make simple communication and social interactions impossibly difficult for those who have it.

We don’t know “the cause,” but we strongly suspect a large genetic component since identical twins will usually share a diagnosis.

We do know we need to learn more.

The Autism Science Foundation is a new group of parents and doctors united to fund the freshest, most exciting ideas to track down the causes of autism and develop evidence-based treatments.

And they’re really good at leveraging small grants to young, driven researchers – like doctoral students – to explore promising new ideas.

“That first grant can make a huge difference,” explains President Alison Singer. “That’s the money that’s dried up from the federal government. That’s what makes or breaks someone’s career.”

It’s a smart approach: don’t write the biggest checks, just try to write the most important ones. Fund a researcher just enough to explore an idea and gather preliminary data. Then, with this germinating seed of science, a researcher can apply for a larger grant somewhere else to continue the work.

And sometimes, most of the legwork of this research has been completed in the umbrella of another study – there’s just no way to see it through.

“You’ll have a student working on another grant who says, ‘wow, we should also be looking at this function, or this particular protein,'” explains Singer. “That only takes a little bit of extra money.”

Given the ASF’s focus on young, driven minds, it’s not surprising that they themselves are a hot startup in the world of autism nonprofits. Nor is it surprising that they’ve already funded successful research at Johns Hopkins.

That said, they can only do what they do by raising money.

“We run this foundation on a shoestring,” says Singer. “At the end of the year, and we write those grant checks and the treasury goes down to zero. The money does not do anyone any good sitting in Citibank.”

ASAN’s Ethical, Legal and Social Implications of Autism Research Symposium Goes Live

10 Apr

The Autistic Self Advocacy Network (ASAN) hosted a symposium on the Ethical, Legal and Social Implications of Autism Research recently. They are now making it available online. See the message below:

Dear Friends:

This week, the media reported that over $1 billion has been spent over the course of the last decade on autism research funding. During a time of constant budget cuts and increasing fiscal pressures on government, this is an astonishing sum. What have we purchased for this investment? How successful has the autism research agenda been in making the American dream a reality for Autistic people and our families? Has our society discussed the ethical, legal and social consequences of how autism research findings may be used? We think these questions are worth asking, and with your help, we think it is past time to get more people involved in the discussion.

Last December, the Autistic Self Advocacy Network joined with the Harvard Law Project on Disability and the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics to hold a symposium on the Ethical, Legal and Social Implications (ELSI) of Autism Research. Supported by a grant from the Administration on Developmental Disabilities, the ASAN ELSI Symposium served as the launching point for a robust conversation about changing the way our society approaches autism research. From our partnership with federal research funders to get self-advocates on grant review panels to growing attention to ethical issues on topics like prenatal testing, self-determination in service-provision and more, the need to introduce values into our national autism research dialogue remains stronger than ever.

Over the course of the month of April, we will be releasing captioned videos of December’s ELSI Symposium. The first is already available on our YouTube channel. You can help us get the word out by watching it alone or with your friends and colleagues, sharing it on facebook and twitter, and starting to talk about these things in your own community. The time has come for our voices to be heard.

Nothing About Us, Without Us!
Ari Ne’eman
President
Autistic Self Advocacy Network

Maternal Metabolic Conditions and Risk for Autism and Other Neurodevelopmental Disorders

9 Apr

A study from the U.C. Davis MIND Institute was published today in the journal Pediatrics: Maternal Metabolic Conditions and Risk for Autism and Other Neurodevelopmental Disorders. The link is to the abstract, but the full paper is available free for download.

The paper is part of the CHARGE Study. (CHARGE: Childhood Autism Risks from Genetics and the Environment). The study looked for increased risk of a child being diagnosed autism if the mother had metabolic conditions during pregnancy. The metabolic conditions studied were diabetes, hypertension and obesity. They found a possibly heightened risk of autism for these pregnancies. I wrote a more in-depth summary which is available at the Autism Science Foundation blog .

Autism Science Foundation live chat with Kevin Pelphrey Friday 12noon eastern time

5 Apr

The Autism Science Foundation will host live interviews with scientists and policy makers during the month of April (Autism Awareness Month). These will be hosted on their facebook page. These will be in a chat format where, as ASF puts it:

“Have questions for an autism researcher? Join us for a live, online chat tomorrow at 12PM ET where YOU can interview Kevin Pelphrey of the Yale Child Study Center.”

The interview/chat with Prof. Pelphrey will be held tomorrow, Friday April 5, at noon eastern time on the Autism Science Foundation facebook page.

Here’s more on Prof. Pelphrey:

Work in Dr. Pelphrey’s laboratory focuses on discovering brain mechanisms underlying the development of different aspects of social cognition including social perception (the initial stages of evaluating the intentions and goals of others by analysis of biological motion cues), theory of mind (the ability to make inferences about the mental states of others), and the perception and regulation of emotion. This work employs cognitive neuroscience methods including functional and structural magnetic resonance imaging, diffusion tensor imaging, imaging genetics, visual scanpath recordings, and virtual reality techniques.

The laboratory conducts studies focused on fundamental questions regarding the typical and atypical development of social cognition in children with and without autism spectrum disorders and other neurodevelopmental disorders. By studying the normal ontogeny of the brain mechanisms underlying social cognition and the abnormal development of these mechanisms in children with autism and other neurodevelopmental disorders, the Pelphrey laboratory is working to uncover the building blocks for complex, multi-faceted, social cognitive abilities.

Dr. Pelphrey has received a Scientist Career Development Award from the National Institutes of Health, a John Merck Scholars Award for his work on the biology of developmental disorders, and the American Psychological Association’s Boyd McCandless Award for distinguished early career theoretical contributions to Developmental Psychology. His research program is funded by the National Institutes of Health, the Simons Foundation, Autism Speaks, and the National Science Foundation.

← Older Entries
Newer Entries →