She puts out a number of parting insights. I quote one below:
Life is for living. Even (and perhaps especially) when your child is autistic. PLEASE get out there, have fun, enjoy life, enjoy your kids, don’t spend your life, love and treasure exclusively on therapies. Go fishing. Go swimming. Take a hike. Volunteer. Sing. Play. LIVE! And while you’re out there, look for ways to help your child with autism to join in the fun. Use your imagination, and help your child with autism to use hers. Introduce your child to his world, and to the people in his world. Help them to get to know and care about your child. It’s the community that, in the long run, will make or break your efforts to help your child succeed.
She has always had many writing projects ongoing, and will continue to write.
The Combating Autism Reauthorization Act has been passed by both houses of the US Legislature. President Obama is expected to sign this into law. The announcement from the Office of Autism Research Coordination is below.
Late Monday night, September 26, 2011, the Senate passed The Combating Autism Reauthorization Act (CARA) by voice vote. The bill was passed by the House of Representatives last week. The bill is now en route to the White House to be signed into law by President Obama. The reauthorization of this legislation will allow the continuation of the Interagency Autism Coordinating Committee (IACC) and several other important Federal autism programs for three years, until September 30, 2014.
The Office of Autism Research Coordination looks forward to continuing to partner with Federal agencies and private organizations to facilitate the activities of the IACC and serve the autism community
Sexuality in others, especially family members, is just not a subject I want to consider. It’s no doubt a family culture thing. My parents have yet to have the talk about “the birds and the bees” with me, and I’m passing from middle age to that strange period in life where I’m not yet able to get discounts, but I don’t really expect to live to double my age (and isn’t that the definition of “middle” age?). Given my druthers (a word that pegs me as middle aged or older), I’d stall this intro until you, the reader, had noticeably advanced in age.
While I can put off writing about it, I have to face the fact that my kid, disabled or not, will mature. Will grow into a sexual being. How do I, a parent, address and support that?
I wish I had the answers. I wish I could put it off until some combination of school/friends/Internet/experimentation took over.
The recent paper which brought this question forward again is:
Sexual understanding and development of young people with intellectual disabilities: mothers ‘ perspectives of within-family context.
Here is the abstract:
The sexual development of young people with intellectual disabilities is a marker of their transition to adulthood and affects their sense of well being and identity. Cognitive impairments and a socially marginalized position increase dependence on their families to assist with sexual matters. In this study, the authors adopted a novel interpretive phenomenological analysis approach, asking 8 mothers to contrast their experience of supporting similarly aged siblings with and without intellectual disabilities. Acknowledgment of their nondisabled offspring’s sexuality was demanded by increasing autonomy, whereas continuing dependence of the offspring with intellectual disabilities hindered mothers who were addressing this intensely private and sensitive issue with them. The topic of sexuality brought to the forefront mothers’ fears about their offspring’s ability to cope with the challenges of adulthood
In the end, this study seems to focus on the experiences of the parents, their fears. Which is a valid subject for study. But I’m still wondering: what us the right approach for this parent to take? As with any parent, any kid, there is probably no single “right” approach. I hope that as time marches forward, some good approaches become clear.
The Combating Autism Reauthorization Act recently passed in the U.S. House of Representatives. The next steps are approval in the Senate and, should that happen, signing by the President. Mr. Obama has indicated that he will sign. The senate, however, is a different story.
Just hours before, however, a clash on the Senate floor revealed fresh opposition in Congress to the measure. When the bill’s sponsor, Sen. Robert Menendez, D-N.J., called for his colleagues to give unanimous consent to the autism legislation, a group of Republican senators objected.
“All of us who object support autism research… but it makes absolutely no sense for us from where we sit to try to play scientist and physician,” said Sen. Jim DeMint, R-S.C.
It’s politics, so I don’t expect the short sound-bytes to be logical. The CARA doesn’t make legislature “play scientist and physician”. It does set up an infrastructure to plan for the research priorities, using researchers and stakeholders for input.
Another paragraph from Disability Scoop:
In addition to opposing condition-specific legislation, DeMint, who was joined by Sen. Tom Coburn, R-Okla., in speaking against the bill, said the measure was not necessary in order to continue current research programs which are funded under other appropriations bills.
Again, let’s consider what actually happens. The Combating Autism Act, and the re-authorization, don’t appropriate funds. They authorize the appropriations. Simply put, they are a plan for what will be authorized. But the Act doesn’t commit congress to make the appropriations. Consider it a statement of intent. A promise.
The Washington Times has a story: Standoff threatens autism research funding. This includes a statement by Senator Tom Coburn:
“What we are opposed to is tying the hands of the researchers and the directors at National Institutes of Health and telling them what they should do and how they should do it.”
I find this odd on two counts. Again, the Act does not tie the hands of people at NIH other than in the formation of the IACC to create a strategic plan and advise the Secretary of Health and Human Services.
As to telling the NIH what to do, what areas to focus upon. Well, there’s the National Cancer Institute, the National Eye Institute, the National Heart Lung and Blood Institute…you get the idea. The NIH has already created specific focus areas. The Combating Autism Act is not out of place in the way the NIH is run by congress.
The Times quotes Rep. Michael F. Doyle:
Mr. Doyle said he spoke with two senators who had concerns about the bill and that he “did not have an indication that there was an effort to block this thing permanently.”
If accurate, this places the current stall in the category of “politics”.
This story is in the U.K. version of the Huffington Post. The article, Law Firm Faces Legal Action Over Handling Of MMR Vaccine Case, brings the question of MMR litigation back up, but in a different way. First, the families are claiming that encephalitis, not autism, was the claimed injury. Second, they are suing the law firm that handled the case, not the vaccine manufacturers.
Three families who claim their children suffered a potentially fatal illness from the mumps, measles and rubella (MMR) vaccine are suing a law firm they say grouped them with a now discredited case over a link between the jab and autism.
A case was brought against the manufacturers of the MMR jab – Smithkline Beecham, Smith Kline & French Laboratories and Sanofi Pasteur MDF – in 2007, over claims that the jab caused autism in children. However three families who say the vaccine caused encephalitis in their children, not autism, believe they were unable to claim compensation because of the way the case was dealt with.
Note that the Huffington Post has the dates wrong in the section quoted above. The case was brought in the late 1990’s and abandoned in 2003 when lack of evidence resulted in a loss of public funds to support the investigation further.
The BMJ also covers the story, noting that in 2002 the then chairman of the UK’s Committee on Safety of Medicines, Alasdair Breckenridge, said: “There is sound evidence that mumps vaccine containing the Urabe stran of virus is associated with a risk of meningitis and [has} no proven additional benefits. The risk to children of a potentially serious neurological complication makes its use unacceptable.”
Since the focus here at Left Brain/Right Brain is primarily autism, and the Wakefield case has been discussed (and discussed, and discussed), I expect that most readers know the basic story. But, indulge me for a moment while I give a short history.
Back in the mid-1990’s, some families believed that MMR caused their child’s autism. They sought both legal and medical expertise to pursue their case. The legal end was led by Richard Barr of the firm Alexander Harris. For medical expertise, they (parents and leagal team) approached Andrew Wakefield, a research gastroenterologist who had just recently implicated the measles vaccine in Crohn’s disease.
After Mr. Wakefield and his team published their first paper in The Lancet in 1998 (a paper since retracted), he became even better known for his views on MMR. Sometime after this, attorney Richard Barr was contacted by a public health insider with concerns about the MMR. Mr. Barr and Mr. Wakefield met with this “whistleblower” in secret.
The thing is, the concern was about encephalitis from the mumps component. Not autism from the measles component, as was Mr. Wakefield’s hypothesis.
The meeting between Mr. Wakefield and this gentleman became known only recently, 1998, while Mr. Wakefield faced charges before the General Medical Council. Mr. Wakefield released details of his story and threatened to disclose the name of the “whistleblower”. Mr. Wakefield later followed through on this threat.
This raises very important questions. Most notably, why didn’t the legal and scientific team working on MMR litigation follow up on the mumps/encephalitis question? The idea was known to Mr. Wakefield and Mr. Barr. The MMR litigation went forward with the theory that the measles component was causing autism, and failed.
And now some parents consider these events to be a strong enough case to sue a law firm handling their case: Alexander Harris.
The families claim the MMR vaccine brought neurological injury and are suing the law firm that brought the original litigation against the vaccine’s manufacturer.
As part of the group autism case, the families claim they were deprived of the compensation likely to come from bringing individual actions.
Mr. Wakefield’s discussion of his meeting with the “whistleblower”, together with commentary from Brian Deer, is in the video below:
While Mr. Deer focuses on how Mr. Wakefield is treating the “whistleblower”, another big question is left open by this discussion: did Mr. Wakefield act on the information he was given? Did the attorneys? The secret meeting in the train station makes a rather dramatic story, but it doesn’t really reflect well on Mr. Wakefield.
The U.S. House of Representatives have voted to approve the Combating Autism Re authorization Act (CARA). The announcement, from Autism Speaks, is below:
Autism Speaks Hails House Approval of Bill Renewing
Combating Autism Act for Another Three Years
Urges Quick Senate Action Before Sept. 30 Deadline
NEW YORK, N.Y. (September 20, 2011) – Autism Speaks, the nation’s largest autism science and advocacy organization, hailed today’s voice vote by the U.S. House of Representatives approving the Combating Autism Reauthorization Act, and urged the Senate to quickly complete congressional action on the bill and send it to President Obama.
The legislation would renew the 2006 Combating Autism Act, which expires September 30, renewing the federal government’s commitment to fund autism research and treatment for another three years. The bill would sustain federal funding at current levels, authorizing $693 million for research and treatment for autism and related disorders.
“Autism Speaks thanks Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA) for their leadership in assuring a strong federal response to autism, which now affects 1 in every 110 children—including 1 in 70 boys,” said Autism Speaks co-founder Bob Wright. “Autism has been declared a public health emergency—doing nothing is not an option.”
Action on the bill moves to the Senate where the measure cleared the Health, Education, Labor and Pensions Committee on Sept. 7 by unanimous vote.President Obama has pledged to sign a bill reauthorizing the CAA this year. The CDC has determined that the incidence of autism in America has jumped to 1 in 110 children, and 1 in every 70 boys.
CARA would authorize a total of $693 million on continued biomedical and treatment research on autism and require further development of an overall strategic plan for the intensification, expansion and better coordination of federal efforts designed to help persons with autism and their families. The fight for CARA in the Senate has been led by Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY).
The Combating Autism Act of 2006 was signed into law on December 19, 2006 by President George Bush following a nearly unanimous Congressional vote. The CAA made a clear statement by the U.S. government on the public health emergency posed by the growing prevalence of ASDs, and the lack of adequate research, effective treatments, and services to address this urgent and growing crisis.
The Combating Autism Reauthorization Act is schedule to be voted on in the U.S. House of Representatives today. Amongst other things, the Act sets out authorizations for research funding for autism. This is also the law which authorizes the Interagency Autism Coordinating Committee (IACC).
Below is the announcement from The Arc. The link helps you find your congressperson’s phone number to call and ask them to vote (my congressman is voting for it).
GOOD NEWS AND ACTION NEEDED TODAY
URGE YOUR REPRESENTATIVE TO PASS THE COMBATING AUTISM ACT REAUTHORIZATION
Call Now
Enter Your Zip Code
September 20, 2011
We have good news! It appears that our advocacy over the past few weeks is starting to pay off!
We have just been informed (directly by Majority Leader Eric Cantor’s office) that the House leadership has put HR 2005, the reauthorization of the Combating Autism Act, on the “suspension calendar” today, Tuesday, September 20 at 6:30 p.m. This means that the House bill could be passed on a fast-track procedure without committee consideration. They need 2/3 of the Representatives present and voting for the bill to be passed under this procedure.
What Does the Combating Autism Act Do?
It provides funding to educate professionals about proper screening, diagnosis, and intervention for children with autism spectrum disorder and other developmental disabilities. It also funds autism research and surveillance. The Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program is just one of the things that the CAA supports. Click here to learn more.
Why is This Important Now?
The Combating Autism Act will expire at the end of this month. If it is not reauthorized before then, people with autism and other developmental disabilities stand to lose appropriate diagnostic, early intervention, and support services.
Take Action
Call your Representative’s office TODAY before 6:30 p.m. EST. Click on the “Take Action” link and enter your zip code to locate your representative’s phone number.
What to Say:
“Please Vote for H.R. 2005, the reauthorization of the Combating Autism Act, when it comes up for a vote under “Suspension of the Rules” this evening.”
The National Council on Disability (NCD) advices the U.S. government on many areas, including civil rights, diversity, employment, housing and education. The NCD has sent a letter to the U.S. Secretary of Education, Arne Duncan, on the subject of “No Child Left Behind” and waivers which allow schools to “shield” some children from the standards of NCLB.
NCD Meets with Secretary Duncan on Forthcoming No Child Left Behind Waivers
Following a meeting with U.S. Department of Education Secretary Arne Duncan on Monday, the National Council on Disability (NCD) sent the following letter to the Secretary, outlining policy recommendations for the NCLB waiver process:
September 19, 2011
The Honorable Arne Duncan, Secretary of Education
U.S. Department of Education
400 Maryland Avenue, SW
Washington, DC 20202
Dear Secretary Duncan:
It was a pleasure meeting with you and your senior staff to discuss priorities for students with disabilities within the forthcoming waiver applications for state flexibility under the No Child Left Behind (NCLB) amendments to the Elementary and Secondary Education Act. I’m writing as follow up providing you with a number of policy proposals we are putting forward to ensure that the significant progress that students with disabilities have made under No Child Left Behind is not lost as the Department pursues a waiver process. While the achievement gap between students with and without disabilities is still wide, No Child Left Behind’s disaggregation of data and requirement that schools make Adequate Yearly Progress for each subgroup of students has been a critical driver of reform.
We support the “flexibility for reform” model the Department has put forward in its vision for the waiver process. Having said that, it is imperative that the Department consider the needs of students with disabilities both with regards to what it should and should not provide in flexibility from NCLB’s accountability provisions and what it should require states and school districts to offer in return for the aforementioned flexibility.
With regards to flexibility, we urge the Department to ensure that the following provisions of NCLB are not eliminated or weakened through the waiver process:
Maintain NCLB’s requirement to disaggregate data and ensure a 95% participation rate in state assessments, disaggregated by subgroup population;
Maintain accountability for the Students with Disabilities subgroup and avoid the creation of additional rules allowing states and districts to shield certain populations of students from assessment; and
Maintain NCLB’s teacher quality provisions, particularly the requirement that special education teachers be highly qualified in any content area in which they provide direct instruction;
With regards to reform, we urge the Department to ensure that closing the achievement gap faced by students with disabilities is given sufficient emphasis through incorporating reform provisions which specifically relate to this population. As such, we encourage the Department to consider the following proposals for inclusion in the waiver process:
Eliminate the 2% rule allowing states and school districts to shield 2% of all students from their accountability systems through the use of modified assessments;
Reform the 1% rule to ensure that students who take the alternative assessment must first be assessed for and have access to Augmentative and Alternative Communication (AAC) technology;
Require states applying for waiver flexibility to instruct Local Education Agencies (LEA) to create an additional sub-group for the purposes of disaggregation of data when a sufficient numbers of students within an LEA fall into multiple sub-groups (i.e.: African-American students with disabilities, low-income students with disabilities, etc.);
Require states applying for waiver flexibility to set goals for increasing students with disabilities’ access to the general education classroom (as measured through IDEA State Performance Plan Indicator 5a); and
Require states to increase their use of research-validated educational methodologies, such as Universal Design for Learning and Response to Intervention;
NCLB has been a source of tremendous progress for students with disabilities, and we believe that if properly constructed, the waiver process can drive similar reform. We urge you to ensure that closing the achievement gap for students with disabilities is as great an area of emphasis for the Department as closing the achievement gaps faced by other minority groups. To quote from NCD’s 2008 report The No Child Left Behind Act and the Individuals with Disabilities Act: A Progress Report, “Teachers, administrators, and the community are becoming aware of what students with disabilities are capable of achieving if they are held to high standards and expectations .”
NCD’s Policy and Program Evaluation Committee Chair Ari Ne’eman stands ready to work with you and your staff on these matters. He can be reached at aneeman@ncd.gov or at our office phone number at 202-272-2004. Thank you for your consideration.
Sincerely,
Jonathan M. Young, J.D., Ph.D.
Chairman, National Council on Disability
The National Institutes of Health’s Office of Autism Research Coordination (OARC) and the Autism Coordinating Committee (ACC) are sponsoring the workshop: Ethical, Legal and Social Implications of Autism Research.
The announcement is below. This sounds like what could be a very useful workshop and a chance to be heard on an important topic.
Date:
Monday, September 26, 2011
Time:
8:30 a.m. to 5:00 p.m. Eastern time (ET)
Agenda:
The National Institutes of Health’s Office of Autism Research Coordination (OARC) and the Autism Coordinating Committee (ACC) are sponsoring the workshop: Ethical, Legal and Social Implications of Autism Research. Leading community stakeholders, bioethicists, and scientific researchers will address topics such as ethical implications of genetic and environmental risk factor research, ethical issues in genetic testing, risk communication, ethical issues in childhood and adult diagnosis, and effective partnering with families and the self advocacy community to advance treatment/intervention and services research.
The goal of the workshop will be to define possible approaches for conducting future studies of ethical, legal, and social implications of ASD research, taking into consideration how these types of issues have been approached in related medical conditions.
To view the agenda, click here.
Place:
Bethesda North Marriott Hotel & Conference Center
5701 Marinelli Road
Bethesda, Maryland 20852
Map and Directions This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site.
http://www.acclaroresearch.com/oarc/9-26-11/ This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site.
Pre-registration is strongly recommended, but pre-registration does not guarantee you a seat. Seating is first come, first served, with expedited check-in for those pre-registered. Seating is limited to room capacity.
Access:
On-site parking available with validation
2 1/2 blocks from the White Flint Metro (Red Line)
Contact Person:
Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, Room 8185a
Rockville, Maryland 20852-9669
Phone: 301-443-6040
Email: IACCPublicInquiries@mail.nih.gov
Please Note:
This workshop will also be open to the public through a conference call. Members of the public who participate using the conference call phone number will be able to listen to the discussion but will not be heard. If you experience any technical problems with the conference call, please e-mail OARC’s technical support team at IACCTechSupport@acclaroresearch.com or call the OARC Technical Support Help Line at 443-680-0098.
Individuals who participate in person or by using these electronic services 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 on this notice at least 7 days prior to the meeting.
As a part of security procedures, attendees should be prepared to present a photo ID at the meeting registration desk during the check-in process. Pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. Please note: Online pre-registration will close by 5:00 p.m. the day before the meeting. After that time, registration will have to be done onsite the day of the meeting.
I wish there were more details in this story. The story is: Scout with autism earns all 132 badges. With apologies for copying the whole story (it is so short!)
To become an Eagle Scout, the highest achievement in Scouting, a Boy Scout must earn 21 merit badges. Nathan Christensen, 17, a senior at Bingham High in South Jordan, Utah, earned all 132 badges. And what makes his accomplishment even more impressive is that Nathan has autism.
Nate’s mother Sandy said Scouting helped improve his social skills. Nate, who didn’t start speaking until he was 7, started working on earning his badges, from journalism to camping, when he was 11. Six years later he had all 132.
Nate took no shortcuts in getting his badges, even though that was an option for him. He has binders for all of his badges to remind him of his hard work, and to inspire him in the future.
NIH autism research funding has collapsed since Mr. Kennedy became HHS Secretary. I wrote about this in my open letter to the IACC. Then I got curious: are the cuts limited to autism, or is this happening across NIH? The answer: it’s everywhere, and it’s worse than I expected. Below is a graph I made […]
Secretary Kennedy has cut back on autism research, and you can act. You should act. You must act. Here are data from NIH Reporter on new NIH autism grants by fiscal year. I pro-rated the results from 2026, since the fiscal year ends in September. This graph shows only those grants which are new in each fiscal […]
Yes, this is a different topic than typical for this blog. But, let’s consider a simple and obvious lie by our president: the As is typical for this president, this project involves multiple lies. Here are but two. First, the White House would not be changed itself. Just added to. As noted in a recent […]
How does one recapture trust in the public health system? I can tell you one way to make it worse. Put Mark Baxill to work at the CDC. Mr. Blaxill is a long time anti-vaccine activist who has done a lot of harm promoting the “vaccines cause autism” lie. We on this blog have been […]
The same people who might value your efforts with Operation Warp Speed will also be able to do the simple math in their heads that says Mr. Kennedy’s approach is going to kill people. Mr. Trump, there is a lot of chatter about you wanting the Nobel Peace Prize. OK, I know you’ve publicly stated […]
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