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Autism Science Foundation Named as a Top Rated Nonprofit by Great Nonprofits

2 Oct

The Autism Science Foundation funds research related to autism.  They have been named as a “Top-Rated Nonprofit” by Great Nonprofits.  Below is the overview from the announcement website.

Mission:

The Autism Science Foundation supports autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

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Results:

ASF has awarded over one million dollars in funding to scientists doing autism research since our founding in 2009. We also provide travel awards for autism stakeholders to attend the International Meeting for Autism Research each year.

We launched an awareness campaign to encourage brain tissue donation so scientists can investigate the neural underpinnings of autism spectrum disorders.

ASF advocated successfully for a new medical classification code for autistic wandering, which became possible after the ASF-funded wandering study published in the journal Pediatrics.

ASF board members and staff are frequently sought after by major national media (CNN, Wall Street Journal, Washington Post, USA Today, etc) to comment on autism related issues.

By Matt Carey

Alycia Halladay, PhD, Named Chief Science Officer of the Autism Science Foundation

29 Aug

Below is a press release for the Autism Science Foundation. They are growing and have added a Chief Science Officer.

Alycia Halladay, PhD, Named Chief Science Officer of the Autism Science Foundation

August 25, 2014- New York, NY)– The Autism Science Foundation, a not-for-profit organization dedicated to funding autism research, today announced that Dr. Alycia Halladay will join the organization as Chief Science Officer. The announcement was made by Autism Science Foundation president Alison Singer.

“Dr. Halladay is the perfect person to lead our growing science department” said Singer. “She has extensive experience in all aspects of autism research, as well as a deep understanding of how to maximize investment in research to provide the best outcomes for families. I could not be more thrilled to have her as part of our executive team.”

Halladay previously served as the Senior Director of Clinical and Environmental Sciences and Interim Head of the Etiology Portfolio at Autism Speaks. Prior to joining Autism Speaks, she was Associate Director for Research at the National Alliance for Autism Research (NAAR). While at NAAR and Autism Speaks, she worked across all areas of autism science, directing or managing portfolios relating to risk factors, diagnosis, and treatment of ASDs. In addition, she led activities relating to family services, communications, awareness, and advocacy. She has a Ph.D. in psychology and behavioral neuroscience from Rutgers University and completed a post-doctoral fellowship in the department of pharmacology and toxicology at Rutgers where she later joined as faculty and currently holds an adjunct position. She has participated as a guest editor for a number of journals including Neurotoxicology, Autism Research, Brain Research and Gastroenterology and has served on grant review panels for the CDC and the NJ Governor’s Council for ASD.

“I am proud and honored to lead the growing science program at the Autism Science Foundation” said Halladay. “This is an exciting and important time for autism research, and I look forward to working with ASF to continue and also expand its scientific contributions.”

In its five years of operations, the Autism Science Foundation has funded over $1.6 million in grants including pre and postdoctoral fellowships, medical school gap year research fellowships, 3-year early career awards, treatment grants, undergraduate summer research funding, research enhancement mini-grants and travel scholarships to enable stakeholders to attend the annual International Meeting for Autism Research (IMFAR).

“Autism Science Foundation’s research programs have grown consistently year after year and now need full time leadership to oversee their continued expansion”, said Dr. Matthew State, chair of ASF’s Scientific Advisory Board and Chair of the Department of Psychiatry at the University of California in San Francisco. “Alycia is a highly respected autism scientist and has exactly the right experience to lead ASF into the next phase of its growth.”

Dr. Halladay will begin work with the foundation on September 8, 2014.

Founded in 2009, Autism Science Foundation (ASF) is a 501(c) (3) public charity. Its mission is to support autism research by providing funding to scientists and organizations conducting autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. To learn more about the Autism Science Foundation or to make a donation visit http://www.autismsciencefoundation.org.

The largest autism science conference, IMFAR, starts this week

12 May

IMFAR, the International Meeting For Autism Research, is being held this week in Atlanta, Georgia. The schedule for the meeting is up, as is the list of talks (program). Abstracts are embargoed until Wednesday at 10am EST.

Here is a list of general topics for the conference:

Adult Outcome: Medical, Cognitive, Behavioral
Animal Models
Brain Function (fMRI, fcMRI, MRS, EEG, ERP, MEG)
Brain Structure (MRI, neuropathology)
Cognition: Attention, Learning, Memory
Communication and Language
Early Development (< 48 months)
Epidemiology
Genetics
Intellectual and Behavioral Assessment and Measurement
Invited, Keynote Speakers, Awards
Medical and Psychiatric Co-morbidity
Molecular and Cellular Biology
Other
Repetitive Behaviors and Interests
Services
Social Cognition and Social Behavior
Special Interest Groups (SIGs)
Specific Interventions – Non-pharmacologic
Specific Interventions – Pharmacologic
Technology Demonstration

I, for one, am very glad to see a focus on adults (<a href=”https://imfar.confex.com/imfar/2014/webprogram/Session3075.html“>three sessions) and on services (three sessions).

There is a session on Autism in Africa. There is very little information on this area.

There is a dearth of autism research on the African continent; this scientific panel session aims to highlight recent research progress addressing this gap. The panel includes scientific presentations from two sub-Saharan African countries, using a combination of qualitative and quantitative methodologies and reporting on both urban and rural African populations. Altogether, the findings from these studies highlight the major barriers to appropriate support for families of children with autism in Africa (including the severe shortage of diagnostic and educational services, lack of awareness about autism and its causes, and high levels of stigma), and report on a promising scalable model that can help tackle these problems by training frontline community-based health extension workers. The challenges and opportunities discussed in these presentations apply not just to the countries under study, but have relevance for the entire African continent and low/middle income countries elsewhere. During the panel discussion these common themes will be reviewed and priority areas for future research and opportunities for intervention will be highlighted, in order to facilitate future autism research, advocacy and capacity building efforts.

I was able to attend IMFAR in San Diego a few years ago with the aid of an Autism Science Foundation grant. It was a great experience and I wish I could attend this year. There is nothing like it for concentrated autism science.


By Matt Carey

Autism Science Foundation hosts live chat with David Amaral and Jill Locke tomorrow (Friday)

19 Apr

The Autism Science Foundation hosts live chats on Fridays during April. Tomorrow they will have chats with David Amaral (of the U.C. Davis MIND Institute) at 12noon eastern time and Jill Locke (of U Penn) at 2pm eastern time. The chats can be found at the ASF website.


By Matt Carey

Was Mark Roithmayr pushed out of Autism Speaks over vaccines?

1 Mar

Last June Autism Speaks suddenly announced that their president, Mark Roithmayr, was leaving and being replaced by Liz Feld. (Mr. Roithmayr is now Chief Development Officer at the Leukemia & Lymphoma Society) There was little information about why Mr. Roithmayr left. The suddenness and the lack of information given out for the departure of an executive pointed to there being much more going on behind the scenes. Things going on which Autism Speaks would prefer did not become public.

In reading up on the group Focus Autism, I found a past webpage of emails from the founder, Barry Segal. One of those is copied below:

Barry Segal’s email to Bob Wright June 21, 2012

Bob,

Good work on Mark. On June 1st, I sent an email to you as well as Peter Bell that stated, “I feel Mark Roithmayr is not an asset to Autism Speaks.” In three weeks he was gone. You acted faster than Warren Buffet. When I wrote him that his top three men at JM knew nothing about roofing, it took him 90 days to replace them.

Here’s the problem. The gist of it is that the government was not going to do the necessary environmental and vaccine research due to political restrictions of public money, but that did not mean that private sector organizations, like Autism Speaks, had to follow those restrictions, per Kevin Barry.

It doesn’t matter whether you have Liz Feld, Donald Trump or Alex Rodriguez on the board. Unless Bernie relents and lets Autism Speaks go after the vaccine involvement, nothing will be gained.

Barry

It appears clear to me from this email that Mr. Roithmayr was pushed out. If we take the email above at face value, Barry Segal (a large donor to Autism Speaks) wrote to Bob Wright (Founder of Autism Speaks) and Peter Bell (executive vice president for Autism Speaks), pushing for Mr. Roitmayr’s ouster. Mr. Segal has elsewhere indicated that both Bob Wright and Peter Bell want more work done on vaccines and autism.

Given the next two paragraphs of the email, it appears that Mr. Segal’s complaint about Mr. Roithmayr was, indeed, his stance on vaccines:

It doesn’t matter whether you have Liz Feld, Donald Trump or Alex Rodriguez on the board. Unless Bernie relents and lets Autism Speaks go after the vaccine involvement, nothing will be gained.

I read this to say that while pushing Mr. Roithmayr out was a step forward (in Mr. Segal’s view), that Bernie (I assume Marcus, of the Marcus Autism Center and Autism Speaks) is still in the way of the wish to push Autism Speaks further into pursuing vaccines.

Kevin Barry, on the other hand, is a former president of Generation Rescue (an organization which especially then was very vocal about vaccine causation) who went to work as a consultant for Autism Speaks in 2006. While at Autism Speaks, Mr. Barry was apparently using others to post his messages to discussion boards. In this case, a call was sent out on the “Evidence of Harm” board for people to give input to Autism Speaks on the “epimdemic ‘debate’ “:

Hi Heidi, Confidential. I am not allowed to comment on the Boards. Would you post this to the EOH board as if you can upon it yourself? It is a page where people can comment on the epidemic “debate”. It would not hurt if Autism Speaks heard more feedback from EOH parents. Thanks, Kevin

In 2009 Autism Speaks lost Eric London (founder of NAAR and member of the Autism Speaks Scientific Affairs Committee) largely due to difference over vaccines. Earlier in 2009, Autism Speaks’ executive vice president of communications and awareness, Alison Tepper Singer, resigned prior to an IACC meeting in which a vote was to take place on vaccine related research. “Knowing she might cast a vote with which Autism Speaks might disagree, she resigned from Autism Speaks prior to the meeting.” In the press release following her departure, Ms. Singer wrote:

“However, for some time I have had concerns about Autism Speaks’ policy on vaccine research. Dozens of credible scientific studies have exonerated vaccines as a cause of autism. I believe we must devote limited funding to more promising areas of autism research.”

The same day, Autism Speaks published a press release, Autism Speaks Withdraws Support for Strategic Plan for Autism Research, Decries Unexpected Change in Final Approval Process. Yes, Autism Speaks pulled it’s support for the Strategic Plan because it didn’t include vaccines. The press release included this statement from Bob Wright:

“We are angered and disappointed by this last-minute deviation in the painstaking process of approving the Strategic Plan. Members of the autism community have worked tirelessly during the last two years to develop a plan that would set the stage for significant progress and discoveries for autism research over the next five years,” said Bob Wright, co-founder of Autism Speaks. “In a matter of minutes, the Federal Members of the IACC destroyed much of the good will that had been established during the course of this process. Because of this surprise tactic, we now have a plan that is tainted and cannot be supported by the autism community.”

It appears that even though Autism Speaks has not made such strong statements about vaccine causation in the past few years, the sentiments remain strong within the organization. Strong enough apparently to push the president out.

If it is true that Mr. Roithmayr was pushed out over vaccines, this would mean that the fears of many are validated: that Autism Speaks has a public face adhering to the science of today, while inside they still have a strong faction, including the founders and executives, pushing for a focus on vaccines. And that there is no room for someone with an opposing view.


By Matt Carey

Comment on: The association between bullying and the psychological functioning of children with autism spectrum disorders

10 Jan

A study published recently addressed the issues of bullying among school age autistics: The association between bullying and the psychological functioning of children with autism spectrum disorders. The abstract is below. I wrote a discussion of this for the Autism Science Foundation’s blog:

Comment on The association between bullying and the psychological functioning of children with autism spectrum disorders.

OBJECTIVE: : Bullying has become a major national concern, particularly as it affects children with disabilities. The current study aimed to determine the association between psychiatric comorbid conditions, involvement in bullying (victim, bully, or bully-victim), and the immediate psychological correlates of bullying among children with autism spectrum disorders (ASDs).

METHODS: : A national sample of 1221 parents completed a survey dedicated to the bullying and school experiences of their child with ASD, reporting on the immediate consequences of bullying involvement, including their child’s psychological well-being and any psychiatric comorbidity. Multivariate logistic regressions were performed to determine whether specific psychiatric comorbidities were associated with an increased risk of involvement as victim, bully, or bully-victim. Analyses of variance determined the relationship between bullying frequency and psychological functioning. All models adjusted for child and school covariates.

RESULTS: : Children who were frequently victimized were more likely to present with internalizing symptoms, whereas children who frequently bullied others were more likely to exhibit emotion regulation problems. Children who were identified as frequent bully-victims presented with both internalizing symptoms and emotion regulation problems. Children with attention-deficit hyperactivity disorder (ADHD) and depression were more likely to have been victimized, whereas children with conduct disorder (CD) or oppositional defiant disorder (ODD) were more likely to have bullied other children. Children identified as bully-victims were more likely to have ADHD, CD, or ODD.

CONCLUSIONS: : Children with ASDs who had displayed bullying behaviors in the past month exhibited psychological impairments, including psychiatric comorbidity. The frequency of bullying behaviors was significantly associated with the level of impairment.

Last chance to participate: UJA Adults with Autism Survey

29 Dec

IAN, the Interactive Autism Network, the UJA Federation of New York and the Autism Science Foundation have teamed up to sponsor the Adult with ASD Survey.

The survey closes on December 31, so time is short to participate.  You can take the survey here.

Here is a description of the effort from the ASF:

As many of you know, there is little information about the changing needs of adults with autism spectrum disorders (ASD) to guide those planning programs and services. That is why the UJA Federation of New York and the Autism Science Foundation are asking adults with ASD (and their parents or guardians) to complete a survey addressing what is going well in daily life, and what is a challenge. The results of this survey will inform decision making with regard to which programs should be expanded and which may no longer be of value.

We invite you to take this survey by joining the Interactive Autism Network (IAN)—the world’s largest online autism research project—and then completing the UJA Adult with ASD Survey. As a member of IAN, you’ll be informed about future surveys and studies, with a chance to provide ongoing input regarding the experience of adults with ASD over time.

Your participation is critical, and will inform those planning programs about which resources and services adults with ASD and their families need most.

Eligibility for Study Participation:

You are eligible to participate in IAN and the UJA Adult with ASD Survey if you are:

An 18-35 year old adult with ASD who is independent (that is, you are not under anyone’s legal guardianship)
The parent of an independent 18-35 year old adult with ASD (that is, your adult son or daughter with ASD is not under legal guardianship and maintains the right to make their own medical and legal decisions)
The legally authorized representative of a dependent 18-35 year old adult with ASD (For example, you may have legal guardianship or medical power of attorney for the adult with ASD)
Participation Details:

IAN registration and this survey can be completed entirely online and will take approximately 20 minutes.

If you’d like to read the IAN Research study consent form, including privacy policies, before continuing, click here:

https://www.ianresearch.org/pdfs/ian_consent.pdf

Principal Investigator: Dr. Paul A. Law

Contact Information: If you have any questions, the IAN team is happy to answer them for you. You can contact them at 1-866-348-3440 or ian@kennedykrieger.org.

To begin registration and the survey, click on the link below:
http://bit.ly/ORf7d5


By Matt Carey