I just saw this press release and thought it worth noting here. I saw the story at Time Magazine yesterday, but I already had a few posts going up them. I find it good that autism research is high enough profile to make the Time list.
PHILADELPHIA, Dec. 11 /PRNewswire-USNewswire/ — Autism research led by scientists at the Children’s Hospital of Philadelphia has been named one of the top ten medical breakthroughs of 2009 by Time Magazine.
On the magazine’s website on Dec. 8, Time cited the largest-ever genetic study of autism spectrum disorders (ASDs), published in April in the journal Nature, by a group led by Hakon Hakonarson, M.D., Ph.D., director of the Center for Applied Genomics at the Children’s Hospital of Philadelphia. That study identified DNA variations that account for as many as 15 percent of all ASD cases. Because the gene region affects how brain cells connect with each other in early childhood, the research significantly advances the understanding of how autism originates.
“We are proud of this research discovery, and are glad to see it receive this recognition,” said Philip R. Johnson, M.D., chief scientific officer at the Children’s Hospital of Philadelphia. “It provides a starting point for translating biological knowledge into future autism treatments.”
The autism gene research from Children’s Hospital, which included two studies in the same issue of Nature, received extensive news coverage, including the CBS Evening News, ABC World News Tonight, BBC, Reuters, the Chicago Tribune, the Philadelphia Inquirer, and other news outlets in the U.K., India, Australia, Germany and China. Hakonarson’s main collaborator was neuroscientist Gerard D. Schellenberg, Ph.D., of the University of Pennsylvania School of Medicine, with other scientists participating from 14 additional centers.
To see Time’s description of new research on autism, click here:
About the Children’s Hospital of Philadelphia: The Children’s Hospital of Philadelphia was founded in 1855 as the nation’s first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals and pioneering major research initiatives, Children’s Hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program is among the largest in the country, ranking third in National Institutes of Health funding. In addition, its unique family-centered care and public service programs have brought the 441-bed hospital recognition as a leading advocate for children and adolescents. For more information, visit http://www.chop.edu.
CONTACT: Rachel Salis-Silverman of the Children’s Hospital of Philadelphia, +1-267-426-6063, Salis@email.chop.edu
The site is still a “beta” release. But I like the general appearance. I like the quick-links on the main page by age group (prenatal, baby, toddler, gradeschool, teen, young adult). For example, the baby link takes you to a page with milestones and articles.
At least, that is what Science Daily has to say about a new study out of Exeter and Bristol. And with a title like that, you have to imagine people will jump on it and claim that the title says that the increase is real (read it again, it doesn’t say that at all).
From Science Daily:
“There is no doubt that the reported prevalence of autistic spectrum disorders has increased spectacularly over the last 20 years,” said Ms Russell. “Medical consensus is that the increase is not a ‘real’ increase in cases but is the result of the diagnosis being made more often.
“But our examination of letters and phone calls received by scientists carrying out research into the environmental causes of autism shows that, in the opinion of many people in contact with autistic children, it is not diagnosis but true incidence which has increased, and these people think that we should be investigating what factors have led to this increase. They believe that it goes hand in hand with lifestyle changes in the late 20th and early 21st century, changes which are causing autistic spectrum disorders to occur more often.”
Let’s take a look at the abstract from the actual study, shall we?
Introduction There has been a dramatic increase in the prevalence of autistic spectrum disorders (ASD) in the last 20 years. The reasons for this are disputed. The consensus among epidemiologists and other experts is that greater case load is due to changes in diagnostic practice rather than reflecting changing aetiological factors leading to a true increase in incidence. We set out to examine lay views concerning the aetiology and prevalence of ASD and whether they conflict with or support this consensus position.
Methods Over 100 unsolicited communications (letters e mails and several telephone calls) were received by a UK epidemiological study of ASD. We carried out a qualitative analysis of all correspondence in order to examine spontaneously expressed lay beliefs about the prevalence and aetiology of ASD.
Results The majority of correspondents suggested theories about environmental causes of ASD. This study demonstrates the strength of lay belief that the true incidence of autism is rising, and this is due to risks from modern technologies and changing lifestyles.
Conclusion This study based on unsolicited data highlights the contrast between lay explanations of increasing prevalence and the consensus opinion of medical experts. It also demonstrates how many people in direct contact with ASD have important information to share.
Yes, they read emails and letters and logged phone calls and came to the conclusion that many people in contact with autistics think that the increase is real.
I am stunned this got published. Maybe I am too close to the subject, but the idea that many non-researchers in the autism communities think the increase is real is, well, far from surprising.
For now, let’s just acknoweldge what is said and what is not said in the paper. They say that non-researchers believe the increase is real. They do not say the increase is real.
A year ago I spent a lot of time blogging about Barack Obama. As the U.S. election neared, I liked what I heard from him–concrete statements, not just pseudo-promises with no teeth like Mr. McCain was giving us here in the U.S..
After the inauguration, I blogged Change and Hope, taking two of the catch-words from the campaign.
Stimulus money was applied to autism research. Tom Insel (head of NIMH and chair of the IACC) gave credit to the fact that they had a Strategic Plan in place. It is easier to justify spending money when you can tell someone (the president in this case) exactly what you intend to do. Dr. Insel noted that in a recent meeting, Mr. Obama restated his commitment to allocate $1B towards autism research.
What we haven’t seen yet is the appointment of an “Autism Czar”, or an increase in IDEA funding to full levels. Also, the IDEA funding from the stimulus money is not a long term commitment.
This has been a very tough year for Mr. Obama. He came in to office with a major economic crisis and (or compounded by!) two wars ongoing. Those are huge distractions for anyone, but I would like to see focus applied especially on long-term, full funding of IDEA.
I am curious as to what other people think of promises made during the election and where we stand now.
It is an unfortunate fact that we see a lot of lost kid stories in the autism community. Elopement–running away–is real and serious.
I’m always caught in what to do when these stories come up in the media. The stories affect me greatly as this is one of the big fears of an autism parent. It affects me even more when I think of the fear for the lost autistic. I remember being lost. I remember the terror. Most of the stories area about kids, and I know I was a much more capable kid than many of the autistics mentioned in those news stories. I can only imagine how terrifying it must be for the lost autistic. I feel like anything I write could trivialize their experiences.
I think I have to get over that. When I talk to the search and rescue people, they tell me it is valuable to raise awareness.
Of course, I’m prompted to write this after the recent, tragic story about James Delorey, an autistic child who was lost in the cold of Cape Breton, Canada for two nights. He was found, but still died of hypothermia.
I wanted to write about search and rescue, from the perspective of a parent of an autistic. But, this isn’t something I am really well read about. So, thankfully Alex Bain over at the RunMan blog have an excellent post on this as a part of their condolences to the family on Master Delorey’s passing. I am borrowing their YouTube content, but do take the time to read the post (and bookmark the blog–it is excellent!)
Here is audio from the radio interview with Alex’s mother, Janet Norman Bain:
One piece of advice that Alex has given on his blog in the past, and in this post, is the use of an ID tag or bracelet. Here is an image of his bracelet:
I have one of these, as does everyone in my family. You can put these on shoes, cliping them to laces/straps. That’s where we put them since (a) I am forgetful and will leave it off much of the time and (b) my kid doesn’t like bracelets.
As I said, and you have likely noticed, I don’t tend to write about these stories. Keeping stories like this in the news is important. It lets the rescue workers–and the people paying them–know they are valued.
Letting people know they are valued is important in general, in my opinion. I tend to contact (email or phone) people who do cool things–like researchers and, well, rescue workers. I’m not saying we need big phone-in campaigns for rescue workers, but if the inspiration strikes, don’t feel shy about dropping an email or commenting on a news story thanking them.
If I had a lost typical kid, I’d probably defer to the search and rescue team’s expertise. By that I mean that I would let them ask the questions about my child and trust that their experience and expertise would guide them to the correct questions (again, for the most part! I’d still have things to offer in addition to their questions)
However, with a disabled child, I keep thinking ahead as to what I would want to tell the Search and Rescue team. Really, I think that I’d need to educate the Search and Rescue team about how my kid is likely very different from any they’ve helped before.
First bit of advice–call the police sooner rather than later. The police won’t mind a second phone call with a message of “you don’t have to send a car, we found the kid”.
The sorts of things to tell the search and rescue team that I’ve thought of and heard from other parents (and let me know if you have others or find these wrong for any reason)
1) What is the person’s “cognitive” age. If they are looking for a 10 year old, they have certain expectations. If you tell them, “this kid cognitively is more like a 4 year old” that resets a lot of expectations.
You may have to tell this this repeatedly.
2) Can the person talk? They are expecting someone verbal.
3) if the person can talk, will he she respond to someone calling out their name? That can change the search methods dramatically.
4) What is the person wearing? One search and rescue person I talked to gave the example of a case where the team didn’t ask the parents this. They assumed that since the kid was about 10, he had dressed himself and that the parents probably didn’t recall what the kid was wearing. If you are dressing your kid still at that age, you may have a better idea what the kid is wearing.
5) Does the person have a restricted diet. If they find a lost kid and offer gatorade or some other rehydration drink, the person may reject it. Strongly. The person may reject other foods and/or drinks. They should be prepared for this.
6) Does the person have dietary restrictions. Whatever you think of diets like GFCF, if a person is on a restricted diet, the rescue workers should know not to offer certain foods.
7) Does the person have a fear of medical workers? A person in a white lab coat may seem nice and comforting to some people, but could be terrorizing to another. If so, the teams should know.
8) Does the person still wear a diaper? They (a) should be prepared with new ones and (b) may want to be on the lookout for a discarded diaper in their search. Some kids can take the diapers off, but can’t put pants/shoes back on. This would mean (a) look out for the clothes and (b) be prepared for the kid to show even more signs of exposure.
9) Is the person on any medications? What is the person like without the medication or on withdrawal from the medication?
10) Does the person have very special interests? This may be a good thing to coax a person out of hiding, and to calm the person after being found. Also, the rescue workers should know that they may have to discuss a single subject over and over until you show up.
11) Just because a person doesn’t talk doesn’t mean that he/she isn’t aware of what is going on.
12) What is calming to the person? Music may calm one person and irritate another. Some people might be sensory seekers, other sensory avoiders. The rescue workers should know for when they find the person.
These are just some of the suggestions I’ve heard from parents. Every person will be different and I know that search and rescue teams are aware of this. But, some people are very different from most of their experiences. Disabled kids, for example. Autistics. Be prepared to educate the search and rescue team about specific details about your loved one.
This is not my area of expertise by far. If you see anything that you think should be changed, don’t be shy. Let me know. I have tried to make this age-neutral, but as a parent I am biased towards talking about children and that probably shows.
Rescue workers are heroes. I think we all hurt a little when someone goes missing and we all cheer a little when someone is found, even if that person is thousands of miles away.
Parents of Kids with Infectious Diseases has produced a series of public service announcements on vaccination for various diseases. These are well done and worth sharing with people who are questioning the value of vaccination.
For any who wish to comment that this has nothing to do with autism, I agree. Unfortunately, the autism community is one of the biggest sources of misinformation about vaccines and vaccine preventable diseases. If I can help PKIDs a bit with this post, I see that as a good thing.
Below is a press release from the Justice for All Action Network and the Autistic Self Advocacy Network. While the topic of seclusion and restraint is painful to write about, it is a pleasure to highlight disability advocacy like this.
Seclusion and restraint legislation one of 12 items on Coalition Agenda
(Washington D.C.) — The Justice for All Action Network (JFAAN), a coalition of disability-led organizations and allies, applauds proposed legislation that protects students with disabilities from the misuse of seclusions and restraints in schools. Introduced today in the House of Representatives and the Senate, the bill will equip students with disabilities with federal protection from abuse in the schools.
“There is a long history of students with disabilities being subjected to inappropriate and abusive seclusions and restraints,” said Ari Ne-eman of the Autistic Self Advocacy Network, a member of the JFAAN Steering Committee. “The legislation introduced today is the first of its kind, going far beyond previous efforts to protect students with disabilities. We look forward to working with House and Senate leaders to pass legislation that addresses each of our concerns and provides students with disabilities with urgently needed protections from abusive seclusions and restraints.”
While the JFAAN Coalition hopes to continue work with House and Senate leaders to ensure that the final legislation is the strongest possible, the bill introduced today is the most comprehensive legislation to date protecting students with disabilities from abuse in the schools.
“We commend Chairman Miller, Representative McMorris Rodgers and Senator Dodd for taking a stand against the barbaric treatment of disabled children and youth that has been allowed to take place in too many schools for too many years. Schools need to educate children without putting students in solitary confinement or using inappropriate and unsafe restraint. When schools become mini-prisons, families have no reason to send their children to school,” said Andrew Imparato, President and CEO of the American Association of People with Disabilities, a member of the JFAAN Steering Committee.
Unlike previous attempts to protect students with disabilities, this legislation applies to all students and bans the worst practices, including mechanical restraint, chemical restraint and physical restraint. “The fact that our children are still subject to abuse is a disgrace,” said Dana Commandatore, the parent of an Autistic child and a supporter of the Autistic Self Advocacy Network. “The legislation introduced today is an important step toward ensuring that students with disabilities are protected from abusive restraints and seclusions.”
Legislation that protects people with disabilities from unwarranted seclusions and restraints is a key component of a campaign agenda developed by JFAAN. The 12-point JFAAN Joint Campaign Agenda addresses major policy issues of people with intellectual, physical, psychiatric, developmental and sensory disabilities.
Created in an effort to build a strong and unified cross-disability movement, the Justice for All Action Network is organized into a steering committee of 13 national consumer-led disability organizations and more than 20 organizational and individual members. The group was formed in the wake of the 2008 Presidential Election.
About the Justice for All Action Network
Mission: The Justice for All Action Network is a national cross-disability coalition, led by disability groups run by persons with disabilities with support from allies, committed to building a strong and unified cross-disability movement so that individuals with disabilities have the power to shape national policies, politics, media, and culture.
Working as a coalition, JFAAN is committed to accomplishing each item on the coalition’s agenda by July 2010, the 20th anniversary of the Americans with Disabilities Act.
Steering Committee Members: ADAPT, American Association of People with Disabilities, American Council of the Blind, Autistic Self Advocacy Network, Hearing Loss Association of America, Little People of America, National Association of the Deaf, National Coalition of Mental Health Consumer Survivor Organizations, National Council on Independent Living, National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, United Spinal Association.
For more information, contact Ari Ne-eman, Autistic Self Advocacy Network, (202) 596-1056;
Andy Imparato, American Association of People with Disabilities, (202) 521-4301
To many of us who have been following the online ‘careers’ of the various people and factions behind Age of ‘Autism’ for many years (at least 7 in my case) this will be no surprise but it still needs pointing out once more:
The Age of ‘Autism’ blog is a repository of and a flag waver for anti-vaccine quackery.
Easy to say and growing easier and easier to demonstrate every day. As of the time of publishing of this post, the latest *six* posts from Age of ‘Autism’ have absolutely nothing to do with autism. These posts are (in reverse order):
1) Counting Offit’s Millions: More on How Merck’s Rotateq Vaccine Made Paul Offit Wealthy
2) Is One Man to Blame for the WorldWide H1N1 Panic?
3) $300K to Banyan Communications from Advisory Commission on Childhood Vaccines?
4) Harvard and CNN Report on Lower than Expected H1N1 Vaccine Uptake
5) Oops. Flu Pandemic May Be The Mildest since Modern Medicine Began Tracking.
6) Kickin’ the Tires of the Green Vaccine Initiative
*All* the above have no relationship to autism. *All* the above have a direct relationship to anti-vaccine beliefs.
One or two stories every now and then that don’t touch on your blog’s core subject is routine and only to be expected – but six in a row? Thats only routine if your core subject is drifting. Or if your *real* core subject is slowly being revealed.
The latest Generation Rescue newsletter leads me to believe that Airborne may be considering funding Generation Rescue. Here is the latest Generation Rescue newsletter:
Generation Rescue is in the final stages of receiving grant funding for a vaccine research study on the long term effects of the current U.S. recommended schedule. The last thing we need are declarations of support from our community who purchased Airborne Health.
1.) Did you purchase Airborne during May 1, 2001 – November 29, 2007?
2.) Do you support a vaccine research study on the long term effects of the current U.S. schedule?
3.) Do you support a study on vaccinated vs. unvaccinated children?
If you answer yes to all three of these questions, then you are a supporter and can help Generation Rescue provide ground breaking research.
The first 40 respondents will receive a free bag of revitaPOPS for completing a declaration of support.
Airborne is a supplement company that produces a product that claimed to be able to help people fight the common cold. They were involved in a class action lawsuit, resulting in an agreed payment of $23 million to consumers who purchased the product and who could prove they purchased it.
My speculation: there is a big pot of the $23M left over, and Generation Rescue is trying to get Airborne to donate it to fund a vaccinated/unvaccinated study.
Of all the groups to manage such a study, Generation Rescue is way (WAY) down on the bottom of the list.
The deadline to submit claims was December 5, 2009 (4 days ago). It strikes this observer as likely that only a small percentage of Airborne’s customers saved their receipts and were able to be compensated, leaving a large amount of money unclaimed.
I really wonder if Airborne knows what sort of group they are working with in Generation Rescue. Soon Airborne will receive testimonials from people who claim to have purchased their products, who want a Vaccinated/Unvaccinated study done by Generation Rescue.
The very fact that Generation Rescue is paying people to submit testimonials should raise red flags at Airborne.
In my opinion, if, for whatever reason, Airborne wants such a study done, they should find a group other than Generation Rescue to manage it. Funding Generation Rescue in this effort is just throwing money away. Airborne would do much better to fund something that could make a real impact in the lives of autistics.
Edit to add
1) Note that Airborne made no admission of fault in this settlement.
2) Here is a section from the settlement document, noting that money left over could be donated to a non-profit group
If the aggregate value of Valid Claims by Settlement Class Members is less than the amount of the Net Settlement Fund, the balance of the Net Settlement Fund, after payment of all Valid Claims of Settlement Class Members, shall be distributed cy pres to non-profit organizations. Class Counsel shall nominate the non-profit organization(s) that will be recipients of any cy pres funds, which shall then be subject to the consent of Defendants (which Defendants shall not unreasonably withhold) and approval by the Court. For purposes of this paragraph, Defendants agree
that in order to validly withhold consent, Defendants must demonstrate that including a non-profit organization as a recipient would substantially
undermine Defendants’ legitimate business interest or is otherwise improper, and that Defendants’ refusal to consent is not philosophically or
politically motivated. Plaintiff agrees that the Center for Science in the Public Interest will not be a recipient of cy pres funds.
It appears to this reader that the class action lawyers (Center for Science in the Public Interest ) get to nominate the possible non-proffits, and that Airborne has the right to reject. In order to reject a non-profit, Airborne would have to claim that the donation “would substantially undermine Defendants’ legitimate business interest or is otherwise improper, and that Defendants’ refusal to consent is not philosophically or politically motivated”
I wonder if class counsel has to prove that the nominations are not philosophically or politically motivated?
The Interagency Autism Coordinating Committee (IACC) will be holding a Full Committee Meeting on Friday, December 11, 2009 from 9:00 AM – 1:00 PM ET. The meeting will be conducted via telephone conference call and webinar only.
The purpose of the IACC meeting is to continue discussing recommendations for the annual update of the IACC Strategic Plan for Autism Spectrum Disorders Research.
The meeting will be conducted and available to the public via a telephone conference call phone number and a webinar conducted using a web presentation tool on the Internet. Registration is not required. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.
Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the web presentation tool or conference call, please-mail IACCTechSupport@acclaroresearch.com.
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