Archive by Author

Tony Humphreys digs a deeper hole

25 Feb

There’s an old saying: the first step to getting out of the hole you dug is to stop digging. Tony Humphreys could do well to take that advice.

On February 6th, Tony Humphreys published an article in the Irish Examiner. The article can be found here on facebook. Here is an excerpt:

In studies in 1997 and 2001 it was found that the children and grandchildren of engineers were more likely to be autistic and that mathematicians had higher rates of autism than other professions. What is shocking is that Dr Baron-Cohen and the team of researchers are one: assuming that autism is a scientific fact and, two: missing the glaringly obvious fact that if the adults they researched live predominanently in their heads and possess few or no heart qualities, their children will need to find some way of defending themselves against the absence of expressed love and affection and emotional receptivity.

After all, the deepest need of every child is to be unconditionally loved and the absence of it results in children shutting down emotionally themselves because to continue to spontaneously reach out for love would be far too painful.

Children’s well being mostly depends on emotional security – a daily diet of nurture, love, affection, patience, warmth, tenderness, kindness and calm responses to their expressed welfare and emergency feelings. To say that these children have a genetic and/or neurobiological disorder called autism or ASD (autistic spectrum disorder) only adds further to their misery and condemns them to a relationship history where their every thought and action is interpreted as arising from their autism.

I’d be interested to hear how people interpret that. I know how Liz Ditz reacted (the title gives you some idea): Why What a Gormless Irish Self-Help Guru Wrote About Autism Matters.

Tony Humphreys is back in the news. This time in an interview on TV3 and an article in The Journal, “Autism is a theory” – Tony Humphreys defends controversial article

From The Journal:

CLINICAL PSYCHOLOGIST TONY Humphreys has defended remarks he made in a controversial article about autism, saying that the disorder is “a theory”.

Humphreys said his suggestion that autism is caused by environmental factors is substantiated by current research.

“When you use the word autism you’re suggesting it’s a fact. Autism is a theory. It is not a fact,” he said on TV3?s Ireland AM this morning.

“I never in all my life have blamed parents. I’ve been absolutely saddened by the response [to the article]. It was not the response in any way which I expected,” he said.

Well, being called out for making insulting and unfounded remarks is probably not what he expected. Then again, a person who makes these remarks probably isn’t well qualified to predict how they will be received.

Why is this man given publicity (even bad publicity)? Here’s another paragraph from The Journal:

When asked about why he wouldn’t discuss the article with the parent of an autistic child on air Humphreys said: “I didn’t want to get into an argument with a parent who must feel so hurt that suddenly research suggests that there is no such thing as autism”.

Does he not understand why parents are annoyed with him or is he just trying to deflect the flack he is getting. Parents aren’t annoyed that he made ignorant statements that “there is no such thing as autism”. Had he just said that he would have been quickly forgotten as an ignorant man making ignorant statements. Happens a lot. No, parents are annoyed (or at least I am) by statements like “missing the glaringly obvious fact that if the adults they researched live predominanently in their heads and possess few or no heart qualities, their children will need to find some way of defending themselves against the absence of expressed love and affection and emotional receptivity.”

Tony Humphreys exposed himself as being completely ignorant about autism on many fronts. He bills himself as a ” consultant clinical psychologist, author and national and international speaker”.

He’s not-apologized. He’s damaged his own reputation by exposing himself as ignorant in the area he claims as expertise. I hope the Irish press does the right thing and just ignores him from here on out.

Differences in White Matter Fiber Tract Development Present From 6 to 24 Months in Infants With Autism

23 Feb

If you watch for autism related news stories you likely have seen multiple stories on a paper out Friday in the American Journal of Psychiatry: Differences in White Matter Fiber Tract Development Present From 6 to 24 Months in Infants With Autism (full paper available online). The researchers studied brain structure in children and compared those who went on to be diagnosed with autism to those who did not. They found differences in white matter between the two groups. In particular fiber tracks were different.

Here’s figure 1 (click to enlarge) from the paper to give you an idea of what they mean by fiber tracks. Check the brain cartoons on the right. Then check the actual data in the graphs. These are “significantly different” trajectories for these measurements. They are not clear differences that could lead to a diagnostic tool.

Here is the abstract:

Objective:

Evidence from prospective studies of high-risk infants suggests that early symptoms of autism usually emerge late in the first or early in the second year of life after a period of relatively typical development. The authors prospectively examined white matter fiber tract organization from 6 to 24 months in high-risk infants who developed autism spectrum disorders (ASDs) by 24 months.
Method:

The participants were 92 high-risk infant siblings from an ongoing imaging study of autism. All participants had diffusion tensor imaging at 6 months and behavioral assessments at 24 months; a majority contributed additional imaging data at 12 and/or 24 months. At 24 months, 28 infants met criteria for ASDs and 64 infants did not. Microstructural properties of white matter fiber tracts reported to be associated with ASDs or related behaviors were characterized by fractional anisotropy and radial and axial diffusivity.
Results:

The fractional anisotropy trajectories for 12 of 15 fiber tracts differed significantly between the infants who developed ASDs and those who did not. Development for most fiber tracts in the infants with ASDs was characterized by higher fractional anisotropy values at 6 months followed by slower change over time relative to infants without ASDs. Thus, by 24 months of age, those with ASDs had lower values.
Conclusions:

These results suggest that aberrant development of white matter pathways may precede the manifestation of autistic symptoms in the first year of life. Longitudinal data are critical to characterizing the dynamic age-related brain and behavior changes underlying this neurodevelopmental disorder.

If the idea of differences in fiber tracks seems somewhat famiiliar, last year Eric Courchesne at UCSD reported at IMFAR about
Abnormally Accelerated Development of Higher-Order Long-Distance Cerebral Tracts In ASD Infants and Toddlers. The paper was highlighted at the IMFAR press conference (and discussedhere at Left Brain/Right Brain.

At the press conference David Amaral mentioned similar work at the IMFAR press conference last year.

At 51:20 in the video above, Prof. Amaral speaks on the work that precocious brain growth at 4-6 months of age in infants and is most prominently present in children with regression.

“..despite the fact that the regression, the behavioral regression, takes place at 18 months or 24 months, the brain changes actually started taking place at 4 to 6 months. So it actually casts a doubt on the idea that a vaccine, the MMR vaccine for example that’s taken at 12 to 18 months, would be actually the precipitating factor because things were starting much much earlier than that.”

The talk that Prof. Amaral was speaking about was Total Cerebral Volume Is Associated with Onset Status In Preschool Age Children with Autism.

C. W. Nordahl1, A. Lee1, M. D. Shen1, T. J. Simon1, S. J. Rogers1, S. Ozonoff2 and D. G. Amaral1, (1)Psychiatry and Behavioral Sciences, UC Davis M.I.N.D. Institute, Sacramento, CA, (2)Psychiatry and Behavioral Sciences, M.I.N.D. Institute, UC Davis, Sacramento, CA
Background: Autism is a heterogeneous disorder, and multiple behavioral and biological phenotypes likely exist. One well-characterized behavioral phenotype is onset status. While some children with autism exhibit symptoms very early in life, others experience a regression or loss of previously acquired skills. There is currently very little known about the neural substrates associated with these two different behavioral trajectories in autism.

Objectives: We examined the relationship between total brain volume and onset status in a large sample of 2-4 year old children with autism spectrum disorder (ASD) (n = 48, early onset, n = 58, regression) and a comparison group of age-matched typically developing children (TD) (n = 55).

Methods: Diagnoses and autism severity were based on ADOS and ADI-R scores and clinical judgment by trained, experienced psychologists. Developmental quotients (DQ), verbal quotients (VQ) and nonverbal quotients (NVQ) were based on the Mullen Scales. Onset status was categorized based on parent reports from related ADI-R questions. Total cerebral volume was compared between autism onset groups as well as relative to age-matched typically developing controls. Autism severity and DQ were also evaluated in relation to brain volume and onset status.

Results: Children who exhibited regression had significantly larger total brain volumes than children with early onset autism (p = .004). Total brain volume in the early onset ASD group did not differ from the TD group, whereas total brain volume was significantly larger in the children with regression. Moreover, children with regression had significantly lower VQ (p = .03) and higher (i.e. more severe) ADOS social and communication scores (p = .02). Total brain enlargement remained significant even after controlling for these variables. There were no significant correlations between total brain volume and VQ or ADOS scores.

Conclusions: Total brain enlargement has been reported in children with autism under the age of five. However, behavioral associations with abnormal brain enlargement have not been fully explored. Our findings suggest that abnormal brain enlargement in autism is associated with a parent-reported regressive pattern of onset and more severe symptoms involving both developmental impairment and ASD severity.

The idea that autism, even regressive autism, has signs as early as 6 months is challenging to some groups on two levels. First the idea that autism involves physical differences in the brain. Second that these differences are present well before regression, or well before vaccines which are sometimes proposed as precipitating events.

The study itself has limitations, one being generalizability. It makes a lot of sense to monitor siblings of autistics since the recurrence risk is high and the chances of collecting data on autistics is higher than in the general populaiton. However, this leaves us with the question: are the types of autism found in siblings (familial autism) representative of all forms of autism?

Apply for IMFAR Travel Grant from the Autism Science Foundation

23 Feb

Are you interested in attending IMFAR (the International Meeting for Autism Research)? The 2012 conference will be held in Toronto, May 17 – May 19. I attended last year in San Diego with the assistance of the Autism Science Foundation (ASF) through a travel grant. If it was possible, I would go this year as well even without the grant.

Applications are open for this year’s ASF travel grants but the deadline (February 29) is coming very quickly. If you are thinking of applying, now is the time.


Here is the announcement from the Autism Science Foundation. I’ll highlight this section:

Applicants should send a letter to grants@autismsciencefoundation.org describing why they want to attend IMFAR and explaining how they would share what they learned with the broader autism community.

Below is the announcement in full:

We are now accepting applications for travel grants to send a limited number of parents of children with autism, individuals with autism, special education teachers, and other stakeholders to attend the International Meeting for Autism Research (IMFAR). This year the conference will be held in Toronto, Canada from May 17-19.

The awards cover up to $1,000 of expenses to be used for registration, travel, accommodations, meals and other directly related expenses, including childcare or special accommodations to enable individuals with autism to participate. Grantees are responsible for obtaining international travel documents.

Applications must be received by February 29, 2012.

Grant Requirements:

Grantees must submit the original receipts for reimbursement and are expected to submit completed travel expense forms within 15 days of return from IMFAR.
Grantees are asked to participate in ASF related activities at IMFAR including a group photo and social media promotion. Full details will be shared closer to the event.
After attending the conference, grantees are asked to share what they learned in their own communities to further spread the knowledge gained within 6 months of attending IMFAR. Grantees are asked to send a short write-up plus photos or a video of their activity for use by ASF.

To apply:

Open to autism stakeholders: individuals with autism, parents of children with autism, special education teachers, graduate and undergraduate students, journalists, and others.
Grants are awarded to US residents only, over 18 years of age.
Applicants should send a letter to grants@autismsciencefoundation.org describing why they want to attend IMFAR and explaining how they would share what they learned 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 email subject line please write: IMFAR Grant.
Letters must be received by February 29, 2012.

Recipients will be announced in late March.

Cochrane Reports: Vaccines for measles, mumps and rubella in children (Review)

22 Feb

The Cochrane collaboration has put out an updated report on the MMR vaccine.

Online discussions (for example, here) are (a) focused on the abstract only so far and (b) centered on two lines from the abstract:

Exposure to the MMR vaccine was unlikely to be associated with autism, asthma, leukaemia, hay fever, type 1 diabetes, gait disturbance, Crohn’s disease, demyelinating diseases, bacterial or viral infections

and

The design and reporting of safety outcomes in MMR vaccine studies, both pre- and post-marketing, are largely inadequate

Here is the full abstract from the paper:

Background
Mumps, measles and rubella (MMR) are serious diseases that can lead to potentially fatal illness, disability and death. However, public
debate over the safety of the trivalent MMR vaccine and the resultant drop in vaccination coverage in several countries persists, despite its almost universal use and accepted effectiveness.

Objectives
To assess the effectiveness and adverse effects associated with the MMR vaccine in children up to 15 years of age.

Search methods
For this update we searched the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library 2011, Issue 2),
which includes the Cochrane Acute Respiratory Infections Group’s Specialised Register, PubMed (July 2004 to May week 2, 2011)
and Embase.com (July 2004 to May 2011).

Selection criteria
We used comparative prospective or retrospective trials assessing the effects of the MMR vaccine compared to placebo, do nothing or a combination of measles, mumps and rubella antigens on healthy individuals up to 15 years of age.

Data collection and analysis
Two review authors independently extracted data and assessed methodological quality of the included studies. One review author
arbitrated in case of disagreement.

Main results
We included five randomised controlled trials (RCTs), one controlled clinical trial (CCT), 27 cohort studies, 17 case-control studies, five time-series trials, one case cross-over trial, two ecological studies, six self controlled case series studies involving in all about 14,700,000 children and assessing effectiveness and safety of MMR vaccine. Based on the available evidence, one MMR vaccine dose is at least 95% effective in preventing clinical measles and 92% effective in preventing secondary cases among household contacts.
Effectiveness of at least one dose of MMR in preventing clinical mumps in children is estimated to be between 69% and 81% for the
vaccine prepared with Jeryl Lynn mumps strain and between 70% and 75% for the vaccine containing the Urabe strain. Vaccination
with MMR containing the Urabe strain has demonstrated to be 73% effective in preventing secondary mumps cases. Effectiveness of
Jeryl Lynn containing MMR in preventing laboratory-confirmed mumps cases in children and adolescents was estimated to be between
64% to 66% for one dose and 83% to 88% for two vaccine doses. We did not identify any studies assessing the effectiveness of MMR in preventing rubella.

The highest risk of association with aseptic meningitis was observed within the third week after immunisation with Urabe-containing
MMR (risk ratio (RR) 14.28; 95% confidence interval (CI) from 7.93 to 25.71) and within the third (RR 22.5; 95% CI 11.8 to
42.9) or fifth (RR 15.6; 95% CI 10.3 to 24.2) weeks after immunisation with the vaccine prepared with the Leningrad-Zagreb strain.
A significant risk of association with febrile seizures and MMR exposure during the two previous weeks (RR 1.10; 95% CI 1.05 to
1.15) was assessed in one large person-time cohort study involving 537,171 children aged between three months and five year of age. Increased risk of febrile seizure has also been observed in children aged between 12 to 23 months (relative incidence (RI) 4.09; 95% CI 3.1 to 5.33) and children aged 12 to 35 months (RI 5.68; 95% CI 2.31 to 13.97) within six to 11 days after exposure to MMR vaccine. An increased risk of thrombocytopenic purpura within six weeks after MMR immunisation in children aged 12 to 23 months was assessed in one case-control study (RR 6.3; 95% CI 1.3 to 30.1) and in one small self controlled case series (incidence rate ratio (IRR) 5.38; 95% CI 2.72 to 10.62). Increased risk of thrombocytopenic purpura within six weeks after MMR exposure was also assessed in one other case-control study involving 2311 children and adolescents between one month and 18 years (odds ratio (OR) 2.4; 95% CI 1.2 to 4.7). Exposure to the MMR vaccine was unlikely to be associated with autism, asthma, leukaemia, hay fever, type 1 diabetes, gait disturbance, Crohn’s disease, demyelinating diseases, bacterial or viral infections.

Authors’ conclusions
The design and reporting of safety outcomes in MMR vaccine studies, both pre- and post-marketing, are largely inadequate. The
evidence of adverse events following immunisation with the MMR vaccine cannot be separated from its role in preventing the target
diseases.

The body of the paper summarizes the accepted papers and judges papers on criteria such as potential for bias and generalizability.

While much discussion online is given to the short abstract available in pubmed, consider the last three sections of the paper.

First, “Agreements and disagreements with other studies or reviews”

Agreements and disagreements with other studies or reviews
Currently, this is the only review covering both effectiveness and safety issues ofMMR vaccines. In agreement with results from other studies and reviews a significant association between autism and MMR exposurewas not found.The study of Wakefield (Wakefield 1998), linking MMR vaccination with autism, has been recently fully retracted (The Editors of The Lancet 2010) as Dr.Wakefield has been found guilty of ethical,medical and scientific misconduct in the publication of the paper; many other authors have moreover demonstrated that his data were fraudulent (Flaherty 2011). A formal retraction of the interpretation that there was a causal link between MMR vaccine and autism has already been issued in year 2004 by 10 out of the 12 original co-authors (Murch 2004). At that time (1998) an excessive and unjustified media coverage of this small study had disastrous consequences (Flaherty 2011; Hilton 2007; Offit 2003; Smith 2008), such as distrust of public health vaccination programmes, suspicion about vaccine safety, with a consequential significant decrease in MMR-vaccine coverage and re-emergence of measles in the UK.

Let’s look at the “Authors Conclusions” section at the end the paper:

AUTHORS’ CONCLUSIONS

This is in two sections:

first:

Implications for practice
Existing evidence on the safety and effectiveness of MMR vaccine supports current policies of mass immunisation aimed at global measles eradication and in order to reduce morbidity and mortality associated with mumps and rubella.

Repeat for emphasis: Existing evidence supports the current policies of mass immunisation.

This is followed by “implications for research”:

Implications for research
The design and reporting of safety outcomes in MMR vaccine studies, both pre and post-marketing, need to be improved and standardised definitions of adverse events should be adopted. More evidence assessing whether the protective effect of MMR could wane with the time since immunisation should be addressed.

At this point I’ll point out what I see as a false dichotomy. The discussion is not between “should vaccination continue” and “are the studies adequate” as some have framed it. Clearly Cochrane has called for both continued immunization *and* more research. This includes research into “assessing whether the protective effect of MMR could wane with the time since immunisation”, something which could point to the need for booster shots.

How about the MMR/autism question?

First off, let’s note that four of Mr. Wakefield’s papers were considered for the review. All four were rejected.

Wakefield 1998 {published data only}
Wakefield AJ, Murch SH, Anthony A, Linnell J, Casson DM, Malik M, et al.Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children. Lancet 1998;351(9103):637–41.

Wakefield 1999a {published data only}
Wakefield AJ, Montgomery SM. Autism, viral infection and measles-mumps-rubella vaccination. Israel Medical
Association Journal 1999;1(3):183–7.

Wakefield 1999b {published data only}
Wakefield AJ. MMR vaccination and autism. Lancet 1999; 354(9182):949–50.

Wakefield 2000 {published data only}
Wakefield AJ, Montgomery SM. Measles, mumps, rubella vaccine: through a glass, darkly. Adverse Drug Reactions and
Toxicological Reviews 2000;19(4):265-83; discussion 284- 92.

Oddly, while the body of the Cochrane review notes that Wakefield 1998 has been retracted, the citation does not. The paper should either not be cited (as it has been effectively erased from the public record) or the citation should include the term “retracted”. The retraction is not the given reason for rejecting the study from the review. It was rejected due to being a case series. Wakefield 1999a and was rejected for lack of comparative data while Wakefield 1999b because it has no data.

As already quoted above, the authors of the Cochrane review *do* take notice of the GMC hearing and the Lancet retraction:

“The study of Wakefield (Wakefield 1998), linking MMR vaccination with autism, has been recently fully retracted (The Editors of The Lancet 2010) as Dr. Wakefield has been found guilty of ethical,medical and scientific misconduct in the publication of the paper; many other authors have moreover demonstrated that his data were fraudulent (Flaherty 2011).”

I note the statement that “many other authors have moreover demonstrated that his data were fraudulent ” First, the Cochrane Report is reporting that the data have been “demonstrated” to be fraudelent. Further, not “The BMJ” have claimed that the data were fraudulent, but “many other authors”.

In what I see as a strange move, the Hornig study (Lack of association between measles virus vaccine and autism with enteropathy: a case-control study.) was not considered by Cochrane with the given reason “Subjects affected by gastrointestinal disturbance”. Hornig et al. was the most on-target attempt to reproduce multiple critical aspects of Mr. Wakefield’s work.

What studies *were* included? Here’s the list, together with how Cochrane rated them for “risk of bias” and “generalisability”
Madsen 2002 moderate/high
Fombonne 2001 high/low
Uchiyama 2007 high/low
Smeeth 2004 moderate/medium
DeStefano 2004 moderate/medium
Mrozek-Budzyn 2010 moderate/medium
Fombonne 2006 moderate/medium
Honda 2005 moderate/medium
Makela 2002 moderate/medium
Taylor 1999 moderate/medium

To close, I’ll repeat the “implications for practice”:

Implications for practice
Existing evidence on the safety and effectiveness of MMR vaccine supports current policies of mass immunisation aimed at global measles eradication and in order to reduce morbidity and mortality associated with mumps and rubella.

President Obama Tells The Arc, Disability Community “I’ve Got Your Back”

20 Feb

Barack Obama, President of the United States, made a surprise visit to a White House Community Leaders Briefing for The Arc.

Here is the press release on the event from The Arc:

Washington, DC – Today, 150 leaders of The Arc from across the country met with a variety of senior White House officials at a Community Leaders Briefing to ask questions and discuss issues facing people with intellectual and developmental disabilities (I/DD). The session, held just for The Arc, included an unannounced visit from President Barack Obama. The President spoke of his commitment to people with disabilities saying, “I’ve got your back.”

This surprise appearance by the President of the United States was the highlight of the day for many attendees, along with the opportunity to interact with high level government officials about how they can support people with I/DD to live in the community. Over the course of the day, leaders of chapters of The Arc were briefed on topics ranging from Medicaid to education to community living and employment for people with I/DD. Many of the speakers, including President Obama, referenced the impact advocates made during budget negotiations to protect Medicaid, and encouraged The Arc and others to continue these efforts.

Another unannounced speaker was White House Chief of Staff Jack Lew, who reiterated the President’s opposition to turning Medicaid into a block grant. He also took questions from the audience, including Barbara Coppens, a member of the national board of directors of The Arc and a self-advocate who took the opportunity to speak about the importance of self-advocacy by people with disabilities.

“I tell other self-advocates – you’ve got to get out there and advocate for yourself because you can’t rely on other people to make change for you,” said Coppens to Chief of Staff Jack Lew.

The day was organized by Kareem Dale, Special Assistant to the President for Disability Policy, who kicked off the agenda by welcoming guests and speaking about employment issues. The Arc heard from Cecilia Muñoz, Director of the White House Domestic Policy Council, who spoke of their commitment to providing services and supports to all in need. Other speakers included Carol Galante, Acting Assistant Secretary – Federal Housing Administration Commissioner, Department of Housing and Urban Development; Cindy Mann, Deputy Administrator, Centers for Medicare and Medicaid Services; Robert Gordon, Executive Associate Director, Office of Management and Budget; and Tom Perez, Assistant Attorney General for Civil Rights, Department of Justice.

Assistant Attorney General Perez discussed the recent Department of Justice settlement with the Commonwealth of Virginia regarding people with I/DD who live in any of its five institutions who could live in the community. He spoke about the bipartisan work going on across the country to implement the Olmstead decision, which states that under the Americans with Disabilities Act (ADA), unnecessarily institutionalizing a person with a disability who, with proper support, is capable of and who wants to live in the community can amount to discrimination.

After a tour of the East Wing of the White House, advocates from The Arc took part in policy breakout sessions that allowed for more detailed discussions on certain issue areas, like community living, family caregiving, education, and Medicaid. The purpose of these briefings was to allow White House and administration officials to engage in a dialogue with leaders of The Arc about how government policies affect the lives of people with I/DD and impact their ability to live full, independent lives. Given the Department of Education’s announcement yesterday to allow ten states waivers from some of the No Child Left Behind law requirements, the education session with Alexa Posny, Assistant Secretary, Office of Special Education and Rehabilitation Services, was incredibly timely, as were meetings with representatives from the Department of Health and Human Services, Department of Justice, Administration on Aging, and the White House Domestic Policy Council.

“This unique, face-to-face opportunity to speak directly to people in positions to make change from within the government allowed leaders of The Arc to make the voices of the millions of people with I/DD heard at the White House. Our network seized on this opportunity, and we left the White House feeling a sense of accomplishment and inspiration for continued advocacy that we will take back to our communities to help grow our movement,” said Peter V. Berns, CEO of The Arc.

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.

← Older Entries
Newer Entries →