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Joint Letter to CDC on Wandering

6 Apr

Below is a letter signed by a number of disability groups, including the Autistic Self Advocacy Network (ASAN) on the issue of the proposed ICD-9 code for wandering. These organizations oppose the addition of the code, for the reasons given below.

This letter was sent to the CDC’s National Center for Health Statistics on Friday, April 1st.

Dear Ms. Pickett:

We are writing as a coalition of organizations representing a wide variety of different constituents in the disabilities field. The constituencies that we collectively represent number in the hundreds of thousands from every stakeholder group in the disability field. We include organizations run by people with disabilities as well as those run by parents, other family members, professionals, providers and many others. Our coalition also includes groups representing a wide array of different kinds of disability categories, including developmental disabilities, mental health conditions, physical disabilities and sensory disabilities. We are writing to express our profound concern about the proposed ICD-9-CM code for wandering discussed at the last meeting of the ICD Coordination and Maintenance Committee on March 9th-10th.

While wandering behavior leading to injury and death represents an important and legitimate safety issue for the disability community, we are concerned that the proposal put forward by CDC’s National Center for Birth Defects and Developmental Disabilities (NCBDDD) is not rooted in high quality research and has significant potential unintended consequences for people with disabilities and family members. We encourage the National Center for Health Statistics to reject an ICD-9-CM coding for wandering behavior as ill-advised and inappropriate.

First, a code for wandering behavior could limit the self-determination rights of adults with disabilities. The wandering coding has no clear operational definition and thus no limits to its application. The proposal makes no distinction between wandering behavior that would qualify for the coding and a rational and willful effort by an individual with a disability to remove oneself from a dangerous or uncomfortable situation. For individuals with significant communication challenges, attempting to leave a situation may be one of the only ways of communicating abuse, a sensorily overwhelming situation or simple boredom. We are concerned that if this coding enters the ICD-9-CM such attempts at communication will be disregarded as medical symptoms.

Second, a code for wandering behavior could lead to serious unintended consequences in professional practice for schools and residential service-provision settings for adults with disabilities. Restraint and seclusion in schools and in residential service-provision settings is already a persistent problem. The application of this coding may result in increased restraint and seclusion as a way of preventing wandering behavior, supplanting required active support, person-centered planning and appropriate supervision. In addition, we are concerned that this coding may enable other forms of overly restrictive interventions and settings. For example, individuals with disabilities who are labeled with a wandering coding may be less likely to be included in the general education classroom, more likely to be placed in large group homes or institutions and more likely to experience chemical restraint. Each of these issues already represents a critical problem for people with intellectual and developmental disabilities that this coding may exacerbate. For example, while only 18% of adults on the autism spectrum receiving developmental disability services have a diagnosis of mental illness, 41% of such individuals are receiving psychotropic medications, suggesting a high incidence of chemical restraint.

Third, the proposed ICD-9-CM code for wandering behavior lacks research support and is not based on evidence or a controlled examination of the issues involved. No research exists to look at wandering as a medical rather than behavioral issue. The research which CDC relies on to make the case for this coding is weak. For example, one of the statistics that CDC cites (that 92% of families of children on the autism spectrum report at least one or more incidents of wandering) comes not from a high quality research study, but instead from an online poll on the website of an advocacy organization. This is not in line with the high standards for research and evidence that the CDC bases its other decision-making on.

While we respect the good intentions behind the creation of this coding, we firmly believe that there are other ways of accomplishing the positive objectives of this coding without placing people with disabilities and our families at risk of the same unintended consequences. Other methods of data collection around wandering can and are being pursued by both public and private funders. In addition, a wide variety of human services and educational approaches hold significant promise in addressing the issue of dangerous wandering behavior outside of a medical context. As a result, we strongly urge you to consider and reject the proposed ICD-9-CM coding for wandering behavior.

Regards,

Access Living
ADAPT
American Association of People with Disabilities
American Association on Intellectual and Developmental Disabilities
Autistic Self Advocacy Network (ASAN)
The Arc of the United States
Brooklyn Center for the Independence of the Disabled (BCID)
Center for Self-Determination
Coalition for Community Integration
Collaboration for the Promotion of Self-Determination
Council of Parent Attorneys and Advocates (COPAA)
Disability Rights Education and Defense Fund (DREDF)
Disabled in Action of Greater Syracuse
Disabled in Action of Metropolitan New York
Disabled Queers in Action
Disability Network of Michigan
Disabilities Network of New York City
Hearing Loss Association of America (HLAA)
Independent Living Center of the Hudson Valley
Independent Living Council of Wisconsin
Independent Living Coalition of Wisconsin
Little People of America (LPA)
Kansas ADAPT
Montana ADAPT
National Association of the Deaf (NAD)
National Association of State Directors of Developmental Disability Services (NASDDDS)
National Association of the Physically Handicapped
National Council on Independent Living (NCIL)
National Organization of Nurses with Disabilities
New York Association of Psychiatric Rehabilitation Services
Options for Independence, Inc.
Pineda Foundation for Youth
Self Advocates Becoming Empowered (SABE)
Silicon Valley Independent Living Center
Statewide Parent Advocacy Network of New Jersey (SPAN)
SKIL Resource Center of Kansas
TASH
Topeka Independent Living Center
United Spinal Association
Wisconsin Board for People with Developmental Disabilities

Autism supplement in yesterdays Independent

31 Mar

An interesting supplement with contributions from Jane Asher amongst others. Download as a PDF right here.

Somali community start to fight back against Andrew Wakefield and Generation Rescue

26 Mar

Taken from http://www.startribune.com/lifestyle/health/118686794.html

Hodan Hassan of Minneapolis understands why some parents are afraid to have their children vaccinated. Until recently, she was one of them.

But today, Hassan will be one of the featured speakers at a Somali community forum designed to allay fears about vaccines in the midst of a measles outbreak.

“[I] read about how the world used to be without the immunization program,” said Hassan, who has four children, including a daughter with autism. “This generation doesn’t understand the benefit, and the importance, and how lucky they are having an immunization program in place.”

So far, 11 cases of measles have been confirmed in Hennepin County since February, five in Somali children who had not been vaccinated. Experts say that vaccine rates have dropped in the Somali community, along with other groups, because of unfounded fears of a possible link to autism.

Now, Somali physicians and state health officials have joined forces to counter what they say are widespread misconceptions about vaccine safety, which has left many children vulnerable to preventable diseases. The concern has grown in the last two years, since a Health Department study confirmed that there were an unusually high number of Somali children in the Minneapolis schools’ autism program.

In Hassan’s case, she stopped vaccinating her children after she learned that her daughter, Geni, now 6, had autism. At the time, she said, she was desperate for answers. Medical experts could not explain what caused her daughter’s condition, a severe communication and behavior disorder. But she quickly learned about the autism activists who blame the vaccines, in spite of medical assurances to the contrary. She began reading their books and attending their conferences, she said, and the fear took hold.

In December, she said, she turned out to hear Andrew Wakefield, the hero of the anti-vaccine movement, at a Somali community meeting in Minneapolis. Wakefield conducted a now-discredited 1998 study suggesting a link between autism and the measles, mumps and rubella (MMR) vaccine.

‘I was shocked’

Later, Hassan said, a local doctor challenged her to do her own research on Wakefield, who was accused of scientific misconduct in connection with the study, and ultimately stripped of his medical license in England.

Now she is one of his biggest critics. “I was shocked when I found out people used to die [of measles],” she said. Many still do in her native Somalia, she noted, and in other in parts of the world where vaccines are not available.

“If we could all go back in time, we would have appreciated it,” she said.

Just this week, Wakefield returned to Minneapolis for a private meeting with Somali families. Members of the news media were barred from Wednesday’s gathering, which reportedly drew only about a half-dozen Somali parents.

But one of the organizers, Patti Carroll of Shoreview, said she doesn’t believe parents are worried about the measles outbreak.

“They’d rather have them get the measles than deal with the effects of unsafe vaccines,” said Carroll, a volunteer with Generation Rescue, an autism advocacy group.

Health officials warn that measles is highly contagious and extremely dangerous. So far, six people have been hospitalized in the current outbreak, most of them young children. All are said to be recovering.

This week, Hassan circulated an e-mail inviting members of the Somali community to tonight’s forum at the Brian Coyle Center in Minneapolis.

“Our community has been misled about MMR causing autism,” she wrote. “Vaccines don’t cause autism and the benefit [outweighs] the risk.” She added: “We are very much against an unlicensed doctor to make our community his scapegoat.”

Detection of Plasma Autoantibodies to Brain Tissue in Young Children with and without Autism Spectrum Disorders

25 Mar

Researchers at the MIND Institute published studies in the past few years correlating antibodies to brain tissue and autism. The first study of this sort (that I recall) studied whether the mother had antibodies to fetal brain tissue: Autism: maternally derived antibodies specific for fetal brain proteins. Other studies have looked at autoantibodies within the plasma of the autistics themselves: Detection of autoantibodies to neural cells of the cerebellum in the plasma of subjects with autism spectrum disorders.

The idea is fairly simple. If the mother or the autistic has antibodies against brain tissue, this might lead to an increased risk of autism.

There are even patent applications in for use of these methods to For example, a 2011 patent application US20110038872A1: METHODS OF DIAGNOSING AND TREATING AUTISM:

Determining a risk of an offspring for developing an autism spectrum disorder comprises identifying in a biological sample from the mother of the offspring in the presence of maternal antibodies that bind to the biomarkers

This past week, another paper from the MIND group came out:

Detection of Plasma Autoantibodies to Brain Tissue in Young Children with and without Autism Spectrum Disorders

In this study they looked for autoantibodies and compared autistics and non-autistics. They found no differences between the groups in frequency of autoantibodies.

Abstract
Autism spectrum disorders (ASDs) are characterized by impaired language and social skills, often with restricted interests and stereotyped behaviors. A previous investigation of blood plasma from children with ASDs (mean age = 5½ years) demonstrated that 21% of samples contained autoantibodies that reacted intensely with GABAergic Golgi neurons of the cerebellum while no samples from non-sibling, typically developing children showed similar staining (Wills et al., 2009). In order to characterize the clinical features of children positive for these autoantibodies, we analyzed plasma samples from children enrolled in the Autism Phenome Project, a multidisciplinary project aimed at identifying subtypes of ASD. Plasma from male and female children (mean age = 3.2 years) was analyzed immunohistochemically for the presence of autoantibodies using histological sections of macaque monkey brain. Immunoreactivity to cerebellar Golgi neurons and other presumed interneurons was observed for some samples but there was no difference in the rate of occurrence of these autoantibodies between children with ASD and their typically developing peers. Staining of neurons, punctate profiles in the molecular layer of the dentate gyrus, and neuronal nuclei were also observed. Taken together, 42% of controls and subjects with ASD demonstrated immunoreactivity to some neural element. Interestingly, children whose plasma reacted to brain tissue had scores on the Child Behavior Checklist (CBCL) that indicated increased behavioral and emotional problems. Children whose plasma was immunoreactive with neuronal cell bodies scored higher on multiple CBCL scales. These studies indicate that additional research into the genesis and prevalence of brain-directed autoantibodies is warranted.

” Immunoreactivity to cerebellar Golgi neurons and other presumed interneurons was observed for some samples but there was no difference in the rate of occurrence of these autoantibodies between children with ASD and their typically developing peers.”

Autism Science Foundation announces Pre & Post Doctoral Training Fellowships

21 Mar

The Autism Science Foundation has announced their pre-doctoral and post doctoral fellowships for this year. The press release is quoted below.

This is an area of research funding I approve of–supporting new researchers. The more new, good people we can pull into the field, the better off autism research will be in the long term.

Pre & Post Doctoral Training Fellowships Announced

(March 21, 2011-New York, NY)–The Autism Science Foundation, a not-for-profit organization dedicated to funding autism research, today announced the recipients of its annual pre and post doctoral fellowships. In all, $220,000 in grants will be awarded to student/mentor teams conducting research in autism interventions, early diagnosis, biomarkers, and animal models. This funding level represents a 22% increase over last year’s training fellowship grants.

“We are thrilled to be increasing our funding in only our second year of operations, and to be supporting such high quality grants”, said Autism Science Foundation co-founder Karen London. “Outstanding research is the greatest gift we can offer our families. We are so grateful to all our donors and volunteers who have come together to support autism research.”

The following new projects have been selected for funding:

Post Doctoral Fellowships:

* Jill Locke/David Mandell: University of Pennsylvania
Implementing Evidence-Based Social Skills Interventions in Public School Settings
* Portia McCoy/Ben Philpot: University of North Carolina
Ube3a Requirements for Structural Plasticity of Synapses
* Haley Speed/Craig Powell: UT Southwestern University
Identifying Impairments in Synaptic Connectivity in Mouse Models of ASD
* Elena Tenenbaum/Stephen Sheinkopf: Women & Infants Hospital andBrown University
Attentional Distribution and Word Learning in Children with Autism

Pre-Doctoral Fellowships:

* Jessica Bradshaw/Robert Koegel: University of California at Santa Barbara
Prelinguistic Symptoms of Autism Spectrum Disorders in Infancy
* Christie Buchovecky/Monica Justice: Baylor College of Medicine
Identifying Genetic Modifiers of Rett Syndrome in the Mouse

Read more about these studies.

The Autism Science Foundation is a 501(c)3 public charity that provides funding to scientists and organizations conducting autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. Learn more at http://www.autismsciencefoundation.org

disclaimer–I have accepted support from ASF to attend IMFAR 2011./

Jake Crosby abuses man with psychiatric disorder

21 Mar

Today at Age of Autism Jake Crosby – man who has a psychiatric disorder himself – took it upon himself to disparage a man who also has a psychiatric disorder and encourage the Age of Autism readers to do the same:

Seth Mnookin – a former drug dealer and burglar who bit a police officer…

Geez oh Peet! Offit picks the lousiest spokespeople, doesn’t he? First Amanda “don’t listen to me” Peet and now this former heroin addict.

Starting on Page 191, the DSM IV diagnoses Substance-Related Disorders:

The Substance-Related Disorders include disorders related to the taking of a drug of abuse (including alcohol), to the side effects of a medication, and to toxin exposure. In this manual, the term substance can refer to a drug of abuse, a medication, or a toxin. The substances discussed in this section are grouped into 11 classes: alcohol; amphetamine or similarly acting sympathomimetics; caffeine; cannabis; cocaine; hallucinogens; inhalants; nicotine; opioids; p hencyclidine (PCP) or similarly acting arylcyclohexylamines; and sedatives, hypnotics, or anxiolytics. Although these 11 classes appear in alphabetical order, the follow ing classes share similar features: alcohol shares features with the sedatives, hypnotics, and anxiolytics; and cocaine shares features with amphetamines or similarly acting sympathomimetics. Also included in this section are Polysubstance Dependence and Other or Unknown Substance-Related Disorders (which include most disorders related to medications or toxins).

What Crosby has done is no different than someone coming up to him and abusing him based on his autism. Its shameful and deeply offensive. This is the 21st Century and Crosby has taken it upon himself to ridicule and abuse a man who has the strength of character to overcome his personal demons and carve out a successful career for himself as an exemplary investigative journalist. If Age of Autism need proof of the calibre of his work they should take a look at the reviews The Panic Virus garnered and compare them to the calibre of the 5 reviews Dan Olmsted could round up for Age of Autism – The Book.

Age of Autism has revealed its truly nasty and shallow depths by abusing a man with a psychiatric disorder. Maybe they should think twice before attacking someone based solely or partly on their disorders in order to whip up negativity in their cult members and start to realise the consequences of their actions. I would wish shame on them but they’ve proven time and time again that shame and self-reflection is an alien emotion to them.

Perusing the IRS form 990’s for some autism organizations

18 Mar

How big are more outspoken autism organizations? How much do they support research? How much do they pay their executives? This became a big question about a year ago when it became public how much Autism Speaks pays their top people. Since the 2009 form 990 (IRS forms from non-profit organizations) are now public, I thought I’d take a quick look at some of the organizations out there. More importantly, we are in a tough financial time and charities get hit hard in recessions.

Autism Speaks

revenue: $45.5M down from $66.4M
Expenses: $43.6M down from $73.1M
Assets: $10.8M up from 8.9M

30 people listed as officers/directors.
14 people listed with salaries >$100k

Total salaries paid–$16.5M

Program services expenses:
$17,362,551 in research
$10,238,612 in awareness
$814,016 grants to families
$2,276,703 in other program service expenses

ratio of salary to program service expenses $16.5M/$30.7M=0.53

For those who want to know, Geraldine Dawson’s salary is $409,382. Very high, but also not as high as was reported last year. The previous year included many one-time expenses involved with her move to Autism Speaks.

Generation Rescue:

revenue: $641K down from $1,190k
expenses: $843k up from $745K
net assets $213k down from $445k

Salaries:
Stan Kurtz is now listed as “former” president. Salary: $129,167
Candace MacDonald: $100,000 in salary. Listed as president.

They spend about $19k on their website/year
biggest single expense (other than salary) is marketing, at $169k.

they list an expense of $729,340 for “GENERATION RESCUE PROVIDES EDUCATION, MEDICAL ASSISTANCE AND TREATMENT FOR CHILDREN WITH AUTISM SPECTRUM DISORDERS, DIRECTLY IMPROVING THE CHILD’S QUALITY OF LIFE FOR ALL FAMILIES IN NEED”

They spent $23k on research.

ratio of salary to program expenses: 364,686/729,340=0.50

The ratio of salary to program expenses is basically the same as for Autism Speaks.

National Autism Association (NAA)

revenue: $542K down from $595k
expenses: $696k up from $570K
net assets: $62K down from $216

no salaries for organization officers listed

15 people listed as officers/etc. (including Katie Wright, Dierdre Imus)

expenses:
$434k in “building a solid foundation” for the NAA. Public awareness, etc.
$75k in crisis support–direct support to families in case of disasters, deaths, etc.

ratio of salary to program service expenses: 134,511/509,232=0.26

The ratio of salary to program services is much lower than for Generation Rescue or Autism Speaks.

SafeMinds

revenue: $196K down from $24k
expenses: $126k down from $179K
net assets: $187K up from $117k

no salaries for organization officers listed
14 people listed as officers/members

Expenses
$41K in research
$31k in website/PR
$23k for conferences
$15k to the Age of Autism
$29k to Thoughtful house

ratio of salary to program service expenses: 0/96,016=0.0

This is the only group with a zero ratio.

TACA (Talk About Curing Autism)

revenue: $841K up from $780k
expenses: $912k up from $847k
net assets: $477K down from $532k

4 people listed as board members/etc
One compensated, at $44k/year

expenses
$349,565. Meetings/conferences/seminars for parent education
$135,753. Print and electronic publications
$99,472. direct financial support to families

ratio of salary to program service expenses: 320,442/586,12 4=0.55

This is similar to Autism Speaks and Generation Rescue.

Checking a few figures.

First, it was claimed a while back that the National Autism Association had thousands of dues paying members. The lowest dues level for the NAA is $35/year. The amount of dues collected was $12,465. This suggests a maximum of 356 dues paying members.

Second, the $15k payment to the Age of Autism intrigued me. Age of Autism portrays itself as an autism organization in advocacy efforts. They are not, however, a charitable organization. The Age of Autism is a limited liability corporation registered to Dan Olmsted. Because of this, financial records are not public. But we can attempt an estimate with public information:

Age of Autism has 4 sponsors listed on their website. (SafeMinds, Generation Rescue, the National Autism Association and TACA). Assuming that all 4 are paying $15k per year, this would mean $60k/year from sponsors. In addition, they received advertising revenue. A link on the top of the Age of Autism blog takes you to where you can see advertising rates. AoA has two types of ads, leaderboard ads (at $10/day) and sidebar ads (varying from $25/week with no image to $250/week for a large ad with picture). They have no leaderboard right now, but 6 sidebar ads. Using an estimate average of $210/week based on the sizes I see (and the fact that this divides easily by 7), that gives $30/day per sidebar. I am assuming that the ads for the books are gratis. If they fill the leaderboard ad, AoA could be getting $190/day from advertisements. 365 days of that gives $69,350. Together with sponsorship, the Age of Autism is bringing in an estimated $129,350 a year. They have to pay for hosting, but they also get donations. They do not specify how the money is distributed.

LeftBrain/RightBrain shame Age of Autism into half-hearted apology for gun violence

14 Mar

Via Facebook of course, not on their actual site:

Funny thing though, I would’ve thought that to be included in an image archive entitled ‘Fan pics _from_ Age of Autism’ it would’ve had to have been approved _by_ Age of Autism..?

Also note the lack of apology for the rampant anti-vaccine part of the image – just the gun violence. Age of Autism fail to see that by promoting an anti-vaccine message they are still condoning violence – just a different kind of violence.

Age of Autism threaten doctors and also make clear how anti-vaccine they are

12 Mar

On a Facebook page entitled ‘Fan photos from Age of Autism‘ you will find this (click for bigger):

Lets not kid around here, this is a direct threat of violence towards people carrying ‘syringes’ i.e. people who might want to vaccinate children. I have no idea if Jenny McCarthy has any knowledge of this photo but its clear from the title ‘fan photos _from_ the Age of Autism, that Age of Autism clearly do.

Lets also be clear about the utterly anti-vaccine message of this image. The editors continually describe themselves as ‘pro-vaccine safety’. Let me suggest to them that creating a picture of Jenny McCarthy threatening people carrying syringes in a medical setting isn’t pro-vaccine safety. Its anti-vaccine pure and simple.

Reauthorizing the Combating Autism Act?

12 Mar

The Combating Autism Act (CAA) committed the US government to fund autism research. As part of this effort, the Interagency Autism Coordinating Committee (IACC) was re-authorized (it actually predated the CAA, having been established under the Children’s Health Act of 2000)

At the end of the last congress, a Combating Autism Reauthorization Act (CARA) was presented. It was a nice move by Sentator Dodd as he was retiring, but as you will read if you follow the link, that bill is dead:

This bill never became law. This bill was proposed in a previous session of Congress. Sessions of Congress last two years, and at the end of each session all proposed bills and resolutions that haven’t passed are cleared from the books. Members often reintroduce bills that did not come up for debate under a new number in the next session.

If you go to the Senate’s webpage and enter “autism” as a search term for current bills, you will get two. Neither is the re-authorization of the CAA. Similar results come from searching Thomas for autism.

Sometimes I think, I just can’t find it. But it really isn’t there. In their piece Urge Congress to Reintroduce the Combating Autism Reauthorization Act!, “The Child Health Site” is asking people to sign a petition to reintroduce CARA.

The text of the original CAA you will find the following (or similar) a number of times: Sunset.–This section shall not apply after September 30, 2011.

Authorization for funding will sunset this year. The IACC will sunset this year. That is, of course, unless a re-authorization occurs. I haven’t seen much from the national autism organizations calling for action on this. There is undoubtedly much going on behind the scenes, but it strikes this observer that perhaps something should have happened by now.

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