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End of the R-word?

12 Oct

The following is a press release from The Arc of the United States. It discusses a new law which will change the wording in many governmental uses from “mental retardation” to “intellectual disability”

E-Newsletter Issue Date: Monday, October 11, 2010

On Friday afternoon, President Barack Obama put his pen to work signing the Twenty-First Century Communications and Video Accessibility Act of 2010 into law, delivering brief remarks on the impact of the law on people with disabilities and celebrating Rosa’s Law. The law, which was enacted by the President on Tuesday, substitutes the term “intellectual disabilities” for “mental retardation” in many federal laws.

Self-advocates William Washington (The Arc’s national office receptionist), Jill Egle (Co-Executive Director, The Arc of Northern Virginia) and Jeremy Jacobson (son of The Arc’s Chief Development and Marketing Officer Trudy Jacobson) joined Paul Marchand, Director of the Disability Policy Collaboration to represent the intellectual and developmental disability community whose advocacy resulted in this bill.

Nine-year-old Rosa Marcellino, for whom the law was named was in attendance with her family and received a hug from the President. Also in attendance were the bill’s sponsors, key policy leaders and musician Stevie Wonder.

Rosa’s Law was passed by the Senate earlier this year and passed the House in September. Self-advocates and The Arc have led the effort to get the bill enacted as part of a nationwide effort to remove the stigma of the “r-word.” The majority of states have altered their terminology by replacing the term “mental retardation” with “intellectual disability” in state laws and in the names of state agencies that serve this population.

Changes in terminology are another stepping stone toward realizing a more inclusive society. The Arc was instrumental in the passage of Rosa’s Law by galvanizing support across the nation and through vigorous advocacy. “We have achieved another historic milestone in our movement. We understand that language plays a crucial role in how people with intellectual disabilities are perceived and treated in society. Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights,” said Peter V. Berns, CEO of The Arc.

The Twenty-First Century Communications and Video Accessibility Act increases accessibility for people with sensory disabilities to modern communications, such as internet access over smart phones. The Arc also advocated strongly for this legislation and celebrates its enactment.

Congenital Rubella Syndrome: a Novel Form of Mercury Poisoning?

13 Sep

I considered titling this: A peak into the upcoming book “Age of Autism?” as this seems to show us the sorts of arguments that will be made in that book.

One of the known environmental causes of autism is Congenital Rubella Syndrome, or CRS. This was discussed as part of a presentation to the IACC, What Causes Autism? The Case for an Environmental Contribution, by Dr. Philip Landrigan. (video is here, starting at about minute 79. Sorry it doesn’t embed).

In the question/answer session for that presentation on at about 114 minutes into the IACC meeting) Lyn Redwood of SafeMinds brought up a new argument–that CRS induced autism may be due to mercury. It turns out that in the 1950’s gamma globulin therapy was started as a means of preventing CRS. Gamma Globulin was injected into pregnant mothers who to prevent or reduce the rubella infections. This exposed the mother and fetus to mercury and should be considered the cause of the autism according to Ms. Redwood.

I must admit that when I heard this question I thought: “Well, here is one of the talking points we will hear from the upcoming book, ‘Age of Autism’, by Mark Blaxill and Dan Olmsted”. Their book appears to be an attempt to tie all of autism (and many other conditions) to mercury, including, I suspect now, CRS. There are other loose ends they will undoubtedly bring up and tie into the mercury hypothesis (like the existence of autistics who were born before thimerosal was invented. That will be interesting to read).

There is at least one big reason why CRS was possibly not linked to autism before Stella Chase’s work in the 1970’s. Congenital Rubella Syndrome causes major disability. Severe to profound mental retardation. There are big spikes in the California Department of Developmental Services data for severe and profound mental retardation corresponding to the CRS outbreaks of the 1960s. Why bring this up? Because for the first two decades after Kanner’s original paper, many people considered intellectual disability (mental retardation) and autism to be completely separate.

From Infantile autism reviewed: a decade of research, a review article written in 1981:

One of the chief problems has been how to handle the questions of mental retardation and organic brain disease, issues especially troublesome with regard to infantile autism. When Kanner (1943) first described the diagnostic features, he also remarked that the condition bore no resemblance to any known neurological condition and implied that autistic children had a basically normal intelligence. For over two decades afterwards, diagnosticians generally believed that the presence of mental retardation or neurologic signs ruled out the diagnosis of infantile autism in the Kannerian sense, even if the child met all behavioral criteria (Eisenberg 1966). Thus diagnosis was frequently one dimensional; a child was labeled as afflicted with either infantile autism or mental retardation, not both.

Or, to put it another way, what many people today call “Kanner’s Autism”, with intellectual disability and/or apraxia, is not what Kanner and most of the people of his time thought of as autism.

But, data, as they say, there’s a funny thing about evidence. Real data is worth more than all these blogger discussions. The paper out today from Pediatrics included immune globulins in their analysis and showed that mercury exposure prenatally and in infancy and found that these exposures did not increase the risk of autism.

Then again, the funny thing about evidence is that it is repeatable. Two previous papers showed no link between immune globulins and autism:

Maternal Rh D status, anti-D immune globulin exposure during pregnancy, and risk of autism spectrum disorders


Lack of association between Rh status, Rh immune globulin in pregnancy and autism.

So, if I am correct and “Age of Autism” the book claims immune globulins *are* a cause of autism, what can we say? We can say that the funny thing about evidence is that some people are not swayed by it. Some people will continue to push the mercury hypothesis forever.

A reminder for neurodiversity

2 Sep

Its been awhile since I blogged about neurodiversity and why it matters to me as a concept. Two recent events in my own life has made me more aware of that than usual.

In the first event, which concerns me directly, I have had to have a change in the medication I take that helps me regulate the manic depression (bipolar) I am diagnosed with. Nobody knows why I need to adjust my medication, only that it needs adjusting and so I shall shortly have Lamotrigine added to the medication regime I have to take.

How does that remind me about neurodiversity? It reminds me that the basic tenets of neurodiversity – respect for the individual differences those with different neurological makeups have – are my best way of being able to move forward in this world. More on this later.

In the second event, which occurred to some of my new family two days ago, myself, my partner and her two daughters – of whom the eldest (she is 4) is autistic – were shopping. Lily began to have a meltdown, a not unknown event in supermarkets for her and one for which we have a carefully worked out strategy. However, this time our strategy was rudely interrupted when a young woman began to shake her head, gawp openly at Lily and make tutting noises. She obviously felt Lily was a naughty child, rather than an autie child.

My partner and I decided that we had had enough of people judging Lily and so remonstrated with this woman. We both explained that Lily was autistic and unable at the age of four to regulate herself in high impact environments but we had to eat and anyway why should we exclude Lily from coming out with us as a family?

The woman waved her hand at us both in a casual dismissal and said we weren’t ‘controlling’ her properly. I smiled through gritted teeth and asked her what she knew about autism. She refused to answer. I asked her again and she walked off with another casual wave of dismissal. My partner’s by now angry shout of ‘shes autistic and a little girl, she can’t help herself’ following her down the aisle.

Of course, this isn’t the first time either one of us have been exposed to such ignorance and I doubt it will be the last. I’m also sure that many parents and autistic people reading this will be familiar with ‘the look’ that can come from such ignorant people who believe they have a divine right to judge others. But it again reminded me of neurodiversity and why I believe in its most basic tenet.

My partner said to me later that what had upset her so much was that Lily (and you can substitute her name for your own or your child’s) would be – to a certain degree either a lot or some – be dependant on the good will of society as she grew up.

People like the woman in Sainsburys are the ‘anti-neurodiversity’. They believe we can and should judge immediately, based on no other evidence than what we see and hear right in front of us. To me, neurodiversity should sit and think, consider the possibilities and act accordingly, based on a desire to help society in the belief that society should do the same for us.

By specifying a desire to include those with differing neurological disorders/disabilities/differences, neurodiversity helps me to feel secure in the world. It also means that I can feel secure in the world my children will inherit.

New study – “90% diagnostic accuracy”

11 Aug

According to study author Christine Ecker in today’s Guardian:

We know already that people with autism have differences in brain anatomy and some regions are just bigger and smaller or just different in shape…[o]ur technique can use this information to identify someone with autism.

The study used 20 non autistic controls and 20 autistic people – all adults – and found ‘significant differences’ in the grey matter areas of the brain which control behaviour and language. This is nothing new in itself, differences in brain structure have long been known about in regards to autism. Whats new in this study is the method – and resultant accuracy – of the detection of autism.

In the experiment, Ecker showed that her imaging technique was able to detect which people in her group had autism, with 90% accuracy. “If we get a new case, we will also hopefully be 90% accurate,” she said. The research, supported by the Medical Research Council, Wellcome Trust and National Institute for Health Research, is published today in the Journal of Neuroscience.

If this is established as a viable method (Carol Povey of NAS states that further testing is still required) then it’ll be the first true objective test for autism ever developed. So far, as everyone knows, autism is diagnosed based on the opinion of a clinician (or team of specialists). Whilst they will probably still play a role, this test offers an objectivity that would be unparalleled. It would also have the interesting effect of making the DSM diagnosis largely obsolete.

Upcoming IACC Services Subcommittee Conference Call – August 10, 2010

6 Aug

I just got this announcement:

The Interagency Autism Coordinating Committee (IACC) Services Subcommittee will be holding a conference call on Tuesday, August 10, 2010 from 2:00 PM – 3:30 PM ET. For more information see: http://iacc.hhs.gov/events.

The purpose of this meeting will be to discuss plans for the IACC Services Workshop that will be held on November 8, 2010 in Rockville, Maryland. (More information about the workshop is posted on the IACC website and will continue to be updated.)

To access the conference call:

USA/Canada Phone Number: 800-369-3340
Public access code: 8415008

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.

Give the IACC your input on what autism research should focus upon

28 Jul

I’ve already blogged this a few times. The deadline is coming soon, July 30th. The IACC listens to public input. Whatever you think should be stressed or not stressed in autism research, let the IACC know now.

The link for the input form is here

They allow you to give very extensive responses. Don’t let this put you off. If you only have a couple comments, give them. Do it now.

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: http://actnow01.web.officelive.com/default.aspx

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.

ASAN Update on IACC Public Comment Deadline

27 Jul

The Interagency Autism Coordinating Committee (IACC) has the job of creating a strategy for the U.S. government’s research in autism. They are made up of government officials, professionals, parents and, most importantly, autistics. The IACC creates their Strategic Plan with input from the public.

One of the big opportunities to submit input is this week. The IACC has an “RFI“, request for information. This is your chance to tell the IACC what you think should (and should not) be stressed in autism research.

I was reminded of this deadline when I received an email from the Autistic Self Advocacy Network (ASAN), which I quote below:

This is another ASAN Update for bloggers in the Autistic and disability rights communities. The public comment period for the Interagency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder Research closes this Friday, July 30, 2010, as stated in the IACC’s reminder notice set forth below. The IACC is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services concerning autism. The Autistic Self Advocacy Network encourages public participation in the IACC’s proceedings.

As always, please feel free to contact us if you have any questions or feedback, and let us know if you would prefer to receive these announcements at a different address or to be removed from the list.

Best regards,

Meg Evans, Director of Community Liaison
Autistic Self Advocacy Network

The RFI announcement is below:

Reminder: IACC 2010 RFI to Inform the 2011 Update of the IACC Strategic Plan Closes This Friday, July 30, 2010

The IACC has issued a formal Request for Information (RFI) to solicit public input to inform the 2011 update of the IACC Strategic Plan for Autism Spectrum Disorder Research. During the six-week public comment period (June 18 – July 30, 2010), members of the public are asked to provide input to the committee on what has been learned in the past year about the issues covered in each of the seven chapters of the IACC Strategic Plan, and on what are the remaining gaps in the subject area covered by each chapter. In addition, the committee is seeking input on the introductory chapter and other general comments about the Strategic Plan. Comments collected through this RFI will be posted to the IACC web site after the closing date.

If you would like to respond to the RFI, please go to: http://www.acclaroresearch.com/oarc/2010rfi/. Responses will be accepted until this Friday, July 30, 2010.

Take the time to comment. You don’t have to give them permission to use your name. You don’t have to respond to every section. You can give a short comment or two (or more) and be done.

Now is the time!

Now is your chance to tell the US Government what autism research should focus upon

13 Jul

I got this reminder notice today. You can give the IACC (Interagency Autism Coordinating Committee) your views on what is important in autism research:

Reminder: IACC 2010 RFI to Inform the 2011 Update of the IACC Strategic Plan is Open Until Friday, July 30, 2010

In June 2010 the IACC issued a formal Request for Information (RFI) to solicit public input to inform the 2011 update of the IACC Strategic Plan for Autism Spectrum Disorder Research. During the six-week public comment period (June 18 – July 30, 2010), members of the public are asked to provide input to the committee on what has been learned in the past year about the issues covered in each of the seven chapters of the IACC Strategic Plan, and on what are the remaining gaps in the subject area covered by each chapter. In addition, the committee is seeking input on the introductory chapter and other general comments about the Strategic Plan. Comments collected through this RFI will be posted to the IACC web site after the closing date.

If you would like to respond to the RFI, please go to: http://www.acclaroresearch.com/oarc/2010rfi/. Responses will be accepted until Friday, July 30, 2010.

The Arc Action alert – HELP PASS THE ABLE ACT IN THIS CONGRESS!

8 Jul

This is an action alert for citizens of the United States. The Arc is gathering support for a bill, the ABLE act, which would allow people to make tax deductible contributions to a savings account which could be used for them to use for “qualified expenses”. Here is the action alert:

HELP PASS THE ABLE ACT IN THIS CONGRESS!

Take Action!
Contact Your Representatives to Convene a Hearing and Vote on the ABLE Act

The Arc and UCP strongly endorse the Achieving a Better Life Experience Act (ABLE) of 2009 (S. 493/H.R. 1205).

Background

The ABLE Act will give individuals with disabilities and their families the ability to save for their child’s future just like every other American family, and help people with disabilities live full, productive lives in their communities. The ABLE Act will allow individuals with disabilities a tax deduction, up to $2,000 per year, for contributions to an “ABLE account.” The account could fund a variety of essential expenses including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.

The legislation continues to have widespread, bipartisan support. However, even though the House bill now has 180 co-sponsors and the Senate bill has 21 cosponsors, the bills have not advanced since they were introduced more than a year ago.

The time to pass this bill is now – Please contact your Representatives today to encourage them to convene a hearing and vote on the ABLE Act! Once the House votes, the Senate should follow. If we don’t get the ABLE act passed by the end of the year, we will have to start all over again next year.

Status of the Bills

House bill (H.R. 1205)
2/26/2009 – Introduced and referred to the Committee on Ways and Means and Committee on Energy and Commerce

Senate bill (S. 493)
2/26/2009 – Introduced and referred to the Committee on Finance

Take Action

Please call your Representative’s home district office during the Independence Day recess (July 2-12). Click on the “Take Action” link and enter your zip code to get the home district office number.

What to say:

* May I please speak to the staff member who covers disability issues?
* I am calling to urge Representative ________________ to pass the Achieving a Better Life Experience Act (ABLE) of 2009 (HR 1205) this year.
* I would like to request that Representative _______________:
* ask Ways and Means Chairman Levin to convene a hearing on the bill
* encourage House leadership to schedule a vote on the bill this Congress.

In case you are wondering what a “qualified expense” would be, below is the text from the House bill on what constitutes a “qualified expense”

`(i) EDUCATION- Expenses for education, including tuition for preschool thru post-secondary education, books, supplies, and educational materials related to such education, tutors, and special education services.

`(ii) HOUSING- Expenses for housing, including rent, mortgage payments, home improvements and modifications, maintenance and repairs, real property taxes, and utility charges.

`(iii) TRANSPORTATION- Expenses for transportation, including the use of mass transit, the purchase or modification of vehicles, and moving expenses.

`(iv) EMPLOYMENT SUPPORT- Expenses related to obtaining and maintaining employment, including job-related training, assistive technology, and personal assistance supports.

`(v) HEALTH, PREVENTION, AND WELLNESS- Expenses for the health and wellness, including premiums for health insurance, medical, vision, and dental expenses, habilitation and rehabilitation services, durable medical equipment, therapy, respite care, long term services and supports, and nutritional management.

`(vi) LIFE NECESSITIES- Expenses for life necessities, including clothing, activities which are religious, cultural, or recreational, supplies and equipment for personal care, community-based supports, communication services and devices, adaptive equipment, assistive technology, personal assistance supports, financial management and administrative services, expenses for oversight, monitoring, or advocacy, funeral and burial expenses.

`(vii) OTHER APPROVED EXPENSES- Any other expenses which are approved by the Secretary under regulations and consistent with the purposes of this section.

`(viii) ASSISTIVE TECHNOLOGY AND PERSONAL SUPPORT SERVICES- Expenses for assistive technology and personal support with respect to any item described in clauses (i) through (vii).

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