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ASAN: Tell Congress “No” to Three More Years of the Same On Autism Policy

29 May

The Combating Autism Re-authorization Act (CARA) has been started in the U.S. legislature. The Autistic Self-Advocacy Network (ASAN) has issued a position statement on the bill:

Today, Senators Menendez and Enzi will be introducing legislation extending the Combating Autism Act for three more years. The Combating Autism Act was passed in 2005 without the involvement or consultation of a single Autistic person, let alone the broader self-advocate community. Without legislative action by Congress, the Act would expire on September 30th of this year. While we respect the Senators’ good intentions, the Menendez-Enzi legislation would freeze in place the current flawed CAA programs, which fail to make any provision for services, do not incorporate anything about adults on the autism spectrum and exclude self-advocates. As a result, ASAN opposes any long term re-authorization of CAA without badly needed investments in services and vital program reforms to ensure self-advocates are involved at every level. We’re urging you to call your Senators and tell them to OPPOSE the Menendez-Enzi re-authorization legislation as too long an extension without any of the needed reforms. You can reach them through the Capital Switchboard at (202) 224-3121 by giving your state and asking to be put through to your Senator. Making the call and urging their opposition is important even if you don’t feel comfortable having a longer conversation, but if you want to provide additional reasons to oppose this extension we have provided several below:

A three year extension of the existing Combating Autism Act means a three year delay before Congress takes any meaningful action on services for Autistic people across the lifespan. It means three years before any new supports for adults on the autism spectrum are introduced and three years before any of the problems with the status quo are fixed. We can’t afford to wait that long.

CAA’s existing programs enable a severe bias in the autism research agenda against services and adult issues. According to the recently released IACC Research Portfolio, less than one percent of autism research dollars spent in 2009 went to research relating to adults while only three percent went to research about improving services, supports and education! This inequity calls out for change.

CAA’s existing structure excludes the very people who should be at the center of the autism conversation: Autistic people ourselves. By locking in place for another three years a bill that was passed without the involvement of self-advocates, Congress would be sending a message that the needs and perspectives of Autistic adults don’t matter.

Any long term extension of CAA must involve additional investments in services, greater inclusion of self-advocates in every program and more respectful language shifting from “combating autism” to supporting Autistic people. Call Congress today at (202) 224-3121! Remember to call twice in order to reach both of your Senators. If for accessibility reasons, you need to e-mail your Senators instead you can find their e-mails on the Senate website at this link.

We need your help to remind Congress they can’t ignore the voices of the Autistic community. As always, Nothing About Us, Without Us!


The Autistic Self Advocacy Network

What I did with your money

18 May

Now LBRB is successfully moved (with a few little bits of tidying needed her and there) I need to tell you what I did with the nearly $1000 so generously donated.

First and foremost of course I bought some new hosting. I think you’ll agree that the site feels much faster and slicker as a result of the move. Gone is the churning away and (hopefully) gone is the CPU throttling.

However, I did have some money left over so I decided that as you all had been so generous that the right thing to do was pay it forward. In that spirit I split the remaining money into three parts and donated thusly:

The Autism Science Foundation – A good deal of LBRB contributors and visitors are American so to donate to a science based autism foundation in the States seemed like a good idea. ASF do not place _any_ research monies into the blind alley of vaccines.

National Autistic Society is the UK’s leading autism charity, giving an actual voice to actual autistic people is vital and the NAS do this better than anyone else in my opinion.

Speur Ghlan are a small, recently incorporated charity based in the land of my fathers – Scotland. I know the founder well and am constantly impressed at her drive and enthusiasm for her subject matter.

The amounts involved were not huge obviously but I hope that I’ve managed to meet with your approval both in choice and reasons for choice.

Thank you once again for your generous donations to get LBRB a better home. I hope I can repay you with years more quality blogging from Sullivan and the odd bit of snark from me 😉

ACT Now!

27 Jul

UK Autism campaigners are working together to ‘ACT NOW!’ about the proposed benefit cuts and assessments and have launched a petition which we intend to deliver personally to No 10 Downing Street. Please ACT NOW! and sign by accessing:

The proposed benefit cuts and the assessments will begin in 2013 for those on the Autistic Spectrum who are in receipt of Disability Living Allowance, Employment Support Allowance and other benefits. In addition the cuts across Local Authorities and Primary Care Trusts could have a catastrophic effect on the Autistic community, a group whose vulnerability already creates high levels of stress and anxiety to those involved.

Those who live with autism 24/7, 365 days each year will be at the core of these cuts and will have to live with whatever ensues as a result of the cuts. We are not opposed to cuts as such and understand that cuts need to be made. However the magnitude of the changes that these cuts will bring about and how they will impact on a community that is already marginalised and discriminated against, must be taken into account.

In 2008 the National Audit Office estimated that autism costs the UK 28.2 billion pounds each year and yet only 18% of Local Authorities who responded to the National Audit Office survey were able to give precise numbers of adults with low functioning autism known to services, with only 12% being able to do so for adults with high functioning autism. Given that thousands of children and adults do not meet the criteria for the provision that is available in their Local Authorities and Primary Care Trusts we would like to know how much of the money being spent is on crisis management.

The cuts to budgets in Local Authorities and Primary Care Trusts are going to make it even harder for children and adults to meet the criteria to access the provision that is available within Authorities and Primary Care Trusts, and we fear that only the minimum that can be supplied to these children and adults will be what is given. We also have grave concerns that there will be no new services that would directly benefit autistic children and adults, commissioned by Local Authorities and Primary Care Trusts.

We are calling for urgent talks with Her Majesty’s Government to ensure that those who live with autism 24/7 are consulted fairly and effectively in every aspect of the decision making process that will ultimately affect our lives.

We would like HMS Government to address and respond to our concerns. We WANT HMS Government to address and respond to our concerns.

UKAF launches a Keep The Promise Autism Awareness Campaign

3 Jun

The UK Autism Foundation is issuing a call to all supporters to back the Foundation’s new ‘Keep The Promise‘ Autism Awareness Campaign that we are launching. We first started the Autism Awareness Campaign in 2000 but we feel that there is a great deal of unfinished business on autism in the United Kingdom and we are appealing to the new Prime Minister David Cameron to take firm and decisive action on autism. Prime Minister Cameron has promised to help and protect the vulnerable. We now ask the Prime Minister to KEEP THE PROMISE and support the 500,000 people with autism.

Please support UKAF’s Autism Awareness Campaign by writing letters to the following – for the cost of a few stamps you too can make a difference by ‘Standing Up for Autism.’ We have been campaigning non-stop since 2000. Her Majesty’s Government needs to do so much more for parents, carers, children and adults with autism and Asperger’s Syndrome in our country. Many are still suffering and struggle to access public services in education, health, specialist speech therapy and respite care.

Join UKAF’s ‘Keep The Promise’ Autism Awareness Campaign by writing to:

Prime Minister David Cameron
10 Downing Street
London SW1A 2AA

PLEASE tell the Prime Minister that you are backing the UK Autism Foundation’s ‘Keep The Promise’ Autism Awareness Campaign and ask him to protect the vulnerable by supporting UKAF’s call for –

* An autism strategy for children
* An autism strategy for the elderly
* A new Autism Stakeholders Group – so there could be genuine and real partnership working with small, medium, large charities and Ministers with HM Government where everyone will feel they are equal at the top table.
* Permanent increases in the disability living allowance, the carer’s allwance, child benefit and tax credits for the Autism Community. Many carers are working over 70 hours a week and get a pitiful 72 pence an hour – this is way below a minimum. Autism is a 24 hour job and carers need more than 72 pence an hour.
* UKAF is calling for state funded autism schools and Autism Academies so that all children and young people with autism will have equality of opportunity. UKAF is calling for all avenues to be open – mainstream, special schools and specialist autism schools.
*UKAF is urging Prime Minister David Cameron and Deputy Prime Minister Nick Clegg to reach out and help poor families with autism who are struggling to cope with life during this recession. UKAF has urged the Government to protect the vulnerable from the cuts to Public Services.

Please also send letters – with the above points to –

Rt.Hon.Nick Clegg MP
Deputy Prime Minister
Cabinet Office
70 Whitehall
London SW1A 2AS

Rt. Hon. Andrew Lansley MP
Secretary of State
Departmentr of Health
Richmond House
79 Whitehall
London SW1A 2NS

Rt. Hon. Michael Gove MP
Secretary of State
Department of Education
Sanctuary Buildings
Great Smith Street
London SWIP 3BT

We appeal to you to spend on a few stamps and write to the above next week, backing the UKAF’s ‘Keep The Promise’ Autism Awareness Campaign – your support will make a difference – we need decisive action on autism.

PLEASE email your friends to join the campaign and start writing these letters. Please spread the word on Facebook, Twitter and My Space and ask them to write to David Cameron to support UKAF’s ‘Keep The Promise’ Autism Awareness Campaign calling for decisive action on autism.

PLEASE support the vulnerable.

PLEASE ask your friends to join the UK Autism Foundation causes page on Facebook please invite all your friends and contacts to join this page and help and support us – we are lobbying and campaigning for the poorest sections of society.

Autism Science Foundation offering places at IMFAR 2010

11 Feb

Funds will enable parents and other stakeholders to attend the leading autism research conference and share what they’ve learned with the broader autism community.

The Autism Science Foundation today announced that is offering a limited number of grants to parents of children with autism and other stakeholders to support attendance at the International Meeting for Autism Research (IMFAR), to be held in Philadelphia, May 20-22, 2010. Awards of up to $1000 can be used to cover registration, travel, accommodations, meals and other directly related expenses, including childcare.

After the conference, grant recipients will be expected to share what they’ve learned with families in their local communities and/or online.

IMFAR is an annual scientific meeting, convened each spring, to promote, exchange and disseminate the latest scientific findings in autism research and to stimulate research progress in understanding the nature, causes, and treatments for autism spectrum disorders. IMFAR is the annual meeting of the International Society for Autism Research (INSAR).

“We are thrilled to be able to give back directly to the autism community in a research-focused way,” said Alison Singer, president of the Autism Science Foundation. “The award recipients will bring critical new research information to their communities, increasing the speed with which the latest data are shared with the broader autism community.”

“These scholarships are a wonderful opportunity to bring more stakeholders to the IMFAR and improve dissemination of the latest research findings presented at the conference,” said Dr. David Amaral, president of INSAR and director of research at the University of California at Davis M.I.N.D. Institute.

To apply, send a letter to grantsATautismsciencefoundationDOTorg describing why you want to attend IMFAR and, most importantly, explaining how you would share what you learn there with the broader autism community. Letters should be sent as Microsoft Word attachments of no more than 2 pages, 12-point type, “Arial” font, with standard margins. In the subject line please write: IMFAR Grant. Letters must be received by March 15, 2010. Recipients will be announced in April.

Less evolved creatures

29 Dec

Back in of this year, Wired did a piece called ‘An Epidemic of Fear‘ that exposed some of the anti-vaccine charlatans masquerading as purveyors of science that have infested the autism community in the last 10 years or so.

Amy Wallace’s excellent piece (”An Epidemic of Fear,” issue 17.11) isn’t really even about vaccines. It’s about what Thomas Friedman calls the American “dumb as we wanna be” attitude, which combines stunning intellectual laziness, the erroneous concept that all information is equal, and the Internet to create a witches’ brew that we’re using to commit national suicide.

Sadly not just a national malaise, but an international one, Wallace’s piece provoked outraged indignation from those primarily responsible for stirring the Witches brew. The same people that time and again commit the sin of pride as they tell you that they – a handful of business moguls, big titted starlets and antivax lawyers – know as much about the science of vaccination as well, actual scientists who study vaccination and its side effects. Who can forget Jenny McCarthy’s ego-exhortation: her son *is* her science, a course she passed at Google University.

Wired go on to say:

…We got more mail about our cover story, “An Epidemic of Fear,” than any other piece we’ve published. Dozens of medical professionals commended Amy Wallace’s feature on the fallacies promulgated by the anti-vaccine movement. Meanwhile the anti-vaxers flooded our mailboxes with stories of children injured by vaccinations, chain letters, misogynistic rants, threats, and just plain crazytown (”Sodomite editors should go get AIDS at the Folsom Street Fair,” advised one less-evolved creature).

Less evolved creatues permeate the rank, file and leadership of the autism/antivax community. From the creatures that are proud of the baby eating pieces on Age of Autism to the creatures like Dr Sherri Tenpenny who think its OK for kids to die of the flu:

Study these numbers. We’ve had SARS, Bird flu and Swine flu. On average, approx. 190 children/year die from the flu. Considering there are about 62M kids under the 14 years of age in the US, this is NOT “statistically signficant” and should not even make the radar screen.

In 2010, the less evolved creatures should be given less and less weight. Let them carry on making their noises to themselves and we – the autism community – can carry on talking about things that matter.

Disability Coalition Applauds Introduction of Legislation that Protects Students with Disabilities from Abuse

10 Dec

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.

This is also discussed on the Education Week blog.

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