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ASAN Invites Autistic College Students to Autism Campus Inclusion Leadership Training

20 Feb

I received the notice below recently from the Autistic Self Advocacy Network (ASAN).

ASAN Invites Autistic College Students to Autism Campus Inclusion Leadership Training

Please disregard the prior email sent out. Due to a small technical issue, the link to apply does not work. This issue has been resolved and we apologize to any inconvenience. Thank you.

– The Autistic Self Advocacy Network Communication Committee

The Autistic Self Advocacy Network with the help of the Mitsubishi Electric American Foundation is launching a new program for Autistic college students. In August 2012, ASAN will be inviting 13-18 Autistic students to participate in the Autism Campus Inclusion leadership training.

Drawing from the powerful Navigating College handbook and the Empowering Autistic Leaders booklet scheduled for release in early 2012, participants will learn valuable skills to effect systems change in their individual campuses and increase their own skills in self-advocacy and self-help.

This is an exciting move forward for ASAN and we hope it can be an exciting move forward for you. If you are a current college undergraduate student who identifies on the Autism Spectrum, including Autistic Disorder, Asperger’s Syndrome, and Pervasive Developmental Disorder Not Otherwise Specified, with a strong interest in the Disability Rights and Autistic Rights movements, we invite you to apply for this leadership training. Applicants must be currently enrolled in a higher education institute or college in the United States (including the District of Columbia), with at least one year left after completion of the leadership training.

If you have any more questions or comments, please direct them to Melody Latimer at mlatimer@autisticadvocacy.org

We look forward to hearing from you.

Thank you for your advocacy,

The Autistic Self Advocacy Network

APPLY NOW

With special thanks to…

Judge Rotenberg Center: Teen tied and shocked for hours; mom calls it “torture”

20 Feb

From a tip by Massachusetts Students United Against The Judge Rotenberg Center (A Facebook group) comes this story at Fox News in Boston: Teen tied and shocked for hours; mom calls it “torture”

(FOX 25 / MyFoxBoston.com) – Video of a disabled teen tied down and given painful electric shocks for seven hours should be made public, the youth’s mother said, so everyone can see what she describes as the “torture” her son went through at the controversial school, the only one in Massachusetts that uses pain to treat its clients.

“This is worse than a nightmare,” Cheryl McCollins said about her disabled son, Andre. “It is horrific. And poor Andre, who had to suffer through this, and not know why.”

The ordeal began after Andre hit a staff member. Inside a classroom, as a camera was recording, he was tied to a restraint board, face down, a helmet over his head.

He stayed like that for seven hours without a break, no food, no water, or trips to the bathroom. Each time he screamed or tensed up, he was shocked, 31 times in all. His mother called the next day to check on him.

“I said, ‘Andre.’ I said, ‘Hello.’ And so he said, ‘Help me,'” McCollins said.

“help me”

Andre spent 7 hours strapped to a board, shocked 31 times. As a result he ended up hospitalized. The mother wants the video of the incident made public. JRC wants to keep the video sealed.

The full story is here and Here is the video of the news report from Fox News:

http://www.myfoxboston.com/video/videoplayer.swf?dppversion=11212

Teen tied and shocked for hours; mom calls it “torture”: MyFoxBOSTON.com

Severe Influenza Among Children and Young Adults with Neurologic and Neurodevelopmental Conditions — Ohio, 2011

17 Feb

Children with neurologic and neurodevelopmental conditions are at increased risk for severe outcomes from influenza, including death. Those aren’t my words. They are the first sentence in a new report by the CDC: Severe Influenza Among Children and Young Adults with Neurologic and Neurodevelopmental Conditions — Ohio, 2011.

Individuals with developmental disabilities are at a higher risk of harm or death from infectious diseases. They are also often more difficult to diagnose due to many factors including difficulties with communication.

The residents included a high percentage of individuals with great challenges. For example, of those with severe infections, nine had “do not resuscitate” orders (the reasons for this is not given).

All 13 residents with severe influenza had severe to profound neurologic and neurodevelopmental disabilities, including physical limitations (e.g., scoliosis, hemiplegia or quadriplegia, or cerebral palsy) (Table 1), and nine had “do not resuscitate” orders.

The story from this Ohio facility is bad on many fronts. An outbreak of influenza swept through the facility. 130 residents total. 76 residents had acute onset of respiratory illness. 13 were severely ill. 10 were hospitalized, and seven died.

All of those severely ill had the influenza vaccine. However, during the investigation it was found that the refrigerator that stored the vaccines was 27 degrees F. If the same temperature was in effect while the vaccines were stored, the low temperature could have inactivated the vaccine.

In other words, these individuals were given vaccines but they could have been rendered useless by the storage conditions.

Here is the abstract:

Children with neurologic and neurodevelopmental conditions are at increased risk for severe outcomes from influenza, including death. In April 2011, the Ohio Department of Health and CDC investigated an influenza outbreak that began in February 2011 in a residential facility for 130 children and young adults with neurologic and neurodevelopmental conditions. This report summarizes the characteristics and clinical courses of 13 severely ill residents with suspected or confirmed influenza; 10 were hospitalized, and seven died. Diagnosis is challenging in this population, and clinicians should consider influenza in patients with neurologic and neurodevelopmental conditions who have respiratory illness or a decline in baseline medical status when influenza is circulating in the community. Prompt testing, early and aggressive antiviral treatment, and antiviral chemoprophylaxis are important for these patients. When influenza is suspected, antiviral treatment should be given as soon as possible after symptom onset, ideally within 48 hours. Treatment should not wait for laboratory confirmation of influenza. During outbreaks, antiviral chemoprophylaxis should be provided to all residents of institutional facilities (e.g., nursing homes and long-term- care facilities), regardless of vaccination status. Residential facilities for patients with neurologic and neurodevelopmental conditions are encouraged to vaccinate all eligible residents and staff members against influenza.

The story notes the relatively low efficacy of the influenza vaccine (about 60%). If the vaccines were compromised by low temperature storage, 60% efficacy could have saved 4 of the seven people. So called “vaccine safety” groups should be calling for more effective vaccines, not downplaying the need for vaccines using the 60% figure.

What are the take-away messages from this? For one, influenza *is* a serious disease. Especially to many in the disability community.

Eugene Hoskins Is His Name

16 Feb

Slate.com has a very interesting story up: Eugene Hoskins Is His Name, The long-forgotten story of a black autistic man in Oxford, Miss., who crossed paths with William Faulkner. The story describes a man from the early 20th century with calendar (and other) savant skills,

“Eugene Hoskins is his name. He lives at Oxford, Miss., a University place of about three thousand people. He is well known about town for his eccentricities.” Thus begins the 1920 account of a 24-year-old black man whose constellation of neuropsychological symptoms—that is to say, his “eccentricities”—are now immediately recognizable as those of an autistic savant. Remarking on his “uncanny knowledge of dates,” the case report relates how “a bystander said to him: ‘I was married on the 8th of June, 1901.’ Without a moment’s hesitation Eugene said: ‘Dat was a Satu’day.’ Given the month, day and year, he will give the day of the week. He never fails, never hesitates. Vary if you will by giving the year and month and asking what day of the month was the second Tuesday, or the fourth Friday—he answers just the same.”

The paper they reference is from 1920. Here is the abstract:

The case of a feeble-minded negro is described. He is chronologically 24 years and mentally between 8 and 9. He has a rather short auditory memory span failing on five digits. He has committed to memory a large array of facts about dates, places and locomotive engine numbers. Given a date—month, year, and day of month—he will give day of week. He cannot go back of 1901 nor forward beyond 1924. Between these limits he never fails. From Psych Bulletin 18:01:00034. (PsycINFO Database Record (c) 2010 APA, all rights reserved)

Not all savants are autsitic. Certainly, not all autistics are savants. But the story is interesting nonetheless.

Follow up on Redwood City special ed teacher story

16 Feb

Last week I wrote about a news story: Redwood City teacher accused of slapping, kicking special needs students. If you are reading this, I would urge you to read two posts by Shannon Des Roches Rosa. On BlogHer: Alleged Special Ed Abuse and the Court of Public Opinion and on Squidalicious: Fair Witness. Ms. Rosa knows the teacher in question quite well.

A Comparison of Urinary Mercury between Children with Autism Spectrum Disorders and Control Children

16 Feb

Researchers are still looking at the question of whether autism is caused by mercury intoxication. One of the measures used in the past is to check the mercury content in the urine of autistic and non autistic children. Claims have been made that autistic children are “poor excretors” of mercury. This is defined as “more mercury in the urine than other children” or “less mercury in the urine of other children”.

A group of researchers from the UK and US have tested a group of autistic children, special needs non autistic children, siblings and regular school children. What did they find? No difference.

Background

Urinary mercury concentrations are used in research exploring mercury exposure. Some theorists have proposed that autism is caused by mercury toxicity. We set out to test whether mercury concentrations in the urine of children with autism were significantly increased or decreased compared to controls or siblings.

Methods

Blinded cohort analyses were carried out on the urine of 56 children with autism spectrum disorders (ASD) compared to their siblings (n = 42) and a control sample of children without ASD in mainstream (n = 121) and special schools (n = 34).
Results

There were no statistically significant differences in creatinine levels, in uncorrected urinary mercury levels or in levels of mercury corrected for creatinine, whether or not the analysis is controlled for age, gender and amalgam fillings.

Conclusions

This study lends no support for the hypothesis of differences in urinary mercury excretion in children with autism compared to other groups. Some of the results, however, do suggest further research in the area may be warranted to replicate this in a larger group and with clear measurement of potential confounding factors.

There were outliers of high mercury content in the special needs children (both autistic and non autistic). Expect those promoting the autism/mercury connection to focus on those children and to build connections between the funding agencies and pharmaceutical companies.

Attorney for Prof. Walker-Smith: alleged link between MMR and autism utterly disproved

14 Feb

Prof. John Walker-Smith was a colleague of Andrew Wakefield, a co-author on the no-retracted 1998 Lancet paper and shared the same fate as Mr. Wakefield after the General Medical Council Hearings: he was struck off the medical register. Prof. Walker-Smith has appealed (Mr. Wakefield did not). A few news stories have come up about this appeal. In Doctor struck off over MMR controversy appeals against ruling, the Guardian notes:

Prof John Walker-Smith tells high court he was denied a fair hearing before he was struck off by the General Medical Council

Many are looking to this appeal for vindication of Mr. Wakefield and his theories on MMR being linked to and causal in autism. Prof. Walker-Smith’s attorney appears to have made a rather clear statement to the contrary:

Miller said it had been important that the disciplinary panel “separate out research from the clinical medicine – but that was a task that appeared to be beyond them”.

The judge asked Miller whether the alleged link between MMR and the vaccine “has now been utterly disproved” in the opinion of “respectable medical opinion”.

Miller said that was “exactly” the position.

edit to add:

I took the statement “The judge asked Miller whether the alleged link between MMR and the vaccine “has now been utterly disproved” ” to be a mistaken report by the Guardian because, as written, it does not make sense. My own interpretation was that the actual question was whether the MMR and *autism* was the point. However, I should have made that assumption very clear in the above piece and I apologize for that. I have written the paper as well as some other people who might be able to clarify the statement.

The Panic Virus: now in paperback

9 Feb

The Panic Virus came out just over a year ago. We discussed it on Left Brain/Right Brain (here and here). As one who has spent a great deal of time reading and writing about the autism/vaccine discussion, I found the book to be extremely well researched and very well written.

The author, Seth Mnookin, now teaches science writing at the Massachusetts Institute of Technology (MIT) and writes for the PLoS blogs.

Here is a blurb on the book:

WHO DECIDES WHICH FACTS ARE TRUE?

In 1998 Andrew Wakefield, a British gastroenterologist with a history of self-promotion, published a paper with a shocking allegation: the measles-mumps-rubella vaccine might cause autism. The media seized hold of the story and, in the process, helped to launch one of the most devastating health scares ever. In the years to come Wakefield would be revealed as a profiteer in league with class-action lawyers, and he would eventually lose his medical license. Meanwhile one study after another failed to find any link between childhood vaccines and autism.

Yet the myth that vaccines somehow cause developmental disorders lives on. Despite the lack of corroborating evidence, it has been popularized by media personalities such as Oprah Winfrey and Jenny McCarthy and legitimized by journalists who claim that they are just being fair to “both sides” of an issue about which there is little debate. Meanwhile millions of dollars have been diverted from potential breakthroughs in autism research, families have spent their savings on ineffective “miracle cures,” and declining vaccination rates have led to outbreaks of deadly illnesses like Hib, measles, and whooping cough. Most tragic of all is the increasing number of children dying from vaccine-preventable diseases.

In The Panic Virus Seth Mnookin draws on interviews with parents, public-health advocates, scientists, and anti-vaccine activists to tackle a fundamental question: How do we decide what the truth is? The fascinating answer helps explain everything from the persistence of conspiracy theories about 9/11 to the appeal of talk-show hosts who demand that President Obama “prove” he was born in America.

The Panic Virus is a riveting and sometimes heart-breaking medical detective story that explores the limits of rational thought. It is the ultimate cautionary tale for our time.

If you were waiting for paperback to save some money, here’s the Amazon.com link. Other booksellers will have it too.

Autism SA battles for funds

9 Feb

For most within the autism communities, I suspect that charities are chosen with great care. Whether under- or un-employed autistic or a parent concerned about providing for a child, each dollar counts to many of us. But if you will allow me to suggest a charity to consider: Autism South Africa

I was reminded of Autism SA while reading another blog. The Simons Foundation SFARI blog has a discussion of a recent study on Autism in Africa. The study they focus on is Excess of non-verbal cases of autism spectrum disorders presenting to orthodox clinical practice in Africa – a trend possibly resulting from late diagnosis and intervention. On many levels this study is important to me. But, what I’m writing about now is based on a comment:

Things are not improving fast enough. South Africa’s main autism charity, Autism SA, has only two months left if it doesn’t get funds to continue. http://www.sowetanlive.co.za/news/2012/02/08/autism-sa-battles-for-funds The majority of doctors, psychologists and other healthcare practitioners in South Africa and the rest of Africa are not trained to diagnose autism.

Autism South Africa’s website includes a link to how to donate. I just sent a few Rand their way, it’s pretty easy.

A Multisite Study of the Clinical Diagnosis of Different Autism Spectrum Disorders

5 Feb

This study came out towards the end of last year. Given the current interest in the DSM-5 diagnostic criteria and how they may impact the numbers of individuals diagnosed with PDD-NOS and Asperger syndrome, this seems timely.

The study had a large number of authors. As a multi-site study, this is not surprising. The lead author is Cathy Lord. She is part of the DSM-5 work group on neurodevelopmental disorders.

The author list and the abstract are below. I’ll pull the conclusion from the abstract out for now:

Clinical distinctions among categorical diagnostic subtypes of autism spectrum disorders were not reliable even across sites with well-documented fidelity using standardized diagnostic instruments. Results support the move from existing subgroupings of autism spectrum disorders to dimensional descriptions of core features of social affect and fixated, repetitive behaviors, together with characteristics such as language level and cognitive function

To put it simply (and with less precision, but let’s go with this): Whether one is diagnosed as Asperger, PDD-NOS or Autistic Disorder is more dependent on where one is diagnosed than what one’s scores are on the tests given.

Seems likely this is part of the reason why there’s a move to incorporate all ASD’s under a single label.

The “lines” between autistic disorder, PDD-NOS and Asperger syndrome are blurred to say the least.

Here is the full author list:

Lord C, Petkova E, Hus V, Gan W, Lu F, Martin DM, Ousley O, Guy L, Bernier R, Gerdts J, Algermissen M, Whitaker A, Sutcliffe JS, Warren Z, Klin A, Saulnier C, Hanson E, Hundley R, Piggot J, Fombonne E, Steiman M, Miles J, Kanne SM, Goin-Kochel RP, Peters SU, Cook EH, Guter S, Tjernagel J, Green-Snyder LA, Bishop S, Esler A, Gotham K, Luyster R, Miller F, Olson J, Richler J, Risi S.
Source

Weill Cornell Medical College, White Plains (Dr Lord), Nathan Klein Institute for Psychiatric Research, Orangeburg (Dr Petkova), and Department of Child and Adolescent Psychiatry, New York University (Drs Petkova and Gan and Ms Lu), Division of Child and Adolescent Psychiatry, Columbia University Medical Center (Drs Algermissen and Whitaker), and Simons Foundation (Ms Tjernagel), New York, New York; Autism and Communication Disorders Center (Drs Green-Snyder, Gotham, Miller, Olson, and Risi and Ms Hus) and Departments of Pediatrics and Human Genetics (Dr Martin), University of Michigan; Ann Arbor; Emory University School of Medicine (Drs Ousley, Klin, and Saulnier), and Marcus Autism Center, Children’s Healthcare of Atlanta (Dr Klin), Georgia; Center for Autism Research, Children’s Hospital of Philadelphia, Pennsylvania (Dr Guy); Departments of Psychiatry (Dr Bernier) and Psychology (Dr Gerdts), University of Washington, Seattle; Departments of Molecular Physiology and Biophysics and Psychiatry, Vanderbilt Kennedy Center (Dr Sutcliffe), and Departments of Pediatrics (Drs Warren and Peters) and Psychiatry (Dr Warren), Vanderbilt University Medical Center, Nashville, Tennessee; Division of Developmental Medicine, Children’s Hospital Boston, Harvard Medical School, Massachusetts (Drs Hanson, Hundley, and Luyster); Center for Autism Research and Treatment and Department of Psychiatry, Semel Institute of Neuroscience, University of California Los Angeles (Dr Piggot); Department of Psychiatry, Montreal Children’s Hospital, Québec, Canada (Drs Fombonne and Steiman); Thompson Center for Autism and Neurodevelopmental Disorders, University of Missouri, Columbia (Dr Miles); Department of Pediatrics, Baylor College of Medicine, Houston, Texas (Drs Kanne and Goin-Kochel); Institute for Juvenile Research, Department of Psychiatry, University of Illinois at Chicago (Dr Cook and Mr Guter); Cincinnati Children’s Hospital Medical Center, Ohio (Dr Bishop); Department of Pediatrics, University of Minnesota, Minneapolis (Dr Esler); and Department of Psychological and Brain Sciences, Indiana University, Bloomington (Dr Richler).

And here the abstract:

CONTEXT:

Best-estimate clinical diagnoses of specific autism spectrum disorders (autistic disorder, pervasive developmental disorder-not otherwise specified, and Asperger syndrome) have been used as the diagnostic gold standard, even when information from standardized instruments is available.

OBJECTIVE:

To determine whether the relationships between behavioral phenotypes and clinical diagnoses of different autism spectrum disorders vary across 12 university-based sites.

DESIGN:

Multisite observational study collecting clinical phenotype data (diagnostic, developmental, and demographic) for genetic research. Classification trees were used to identify characteristics that predicted diagnosis across and within sites.

SETTING:

Participants were recruited through 12 university-based autism service providers into a genetic study of autism.

PARTICIPANTS:

A total of 2102 probands (1814 male probands) between 4 and 18 years of age (mean [SD] age, 8.93 [3.5] years) who met autism spectrum criteria on the Autism Diagnostic Interview-Revised and the Autism Diagnostic Observation Schedule and who had a clinical diagnosis of an autism spectrum disorder. Main Outcome Measure Best-estimate clinical diagnoses predicted by standardized scores from diagnostic, cognitive, and behavioral measures.

RESULTS:

Although distributions of scores on standardized measures were similar across sites, significant site differences emerged in best-estimate clinical diagnoses of specific autism spectrum disorders. Relationships between clinical diagnoses and standardized scores, particularly verbal IQ, language level, and core diagnostic features, varied across sites in weighting of information and cutoffs.

CONCLUSIONS:

Clinical distinctions among categorical diagnostic subtypes of autism spectrum disorders were not reliable even across sites with well-documented fidelity using standardized diagnostic instruments. Results support the move from existing subgroupings of autism spectrum disorders to dimensional descriptions of core features of social affect and fixated, repetitive behaviors, together with characteristics such as language level and cognitive function.

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