ASAN Unveils Toolkit on Ending Organ Transplant Discrimination
A Toolkit for Disability Advocates
March 14, 2013 ASAN — ASAN has prepared a comprehensive toolkit to empower people with disabilities, their families, and other disability advocates to help combat disability-based discrimination in organ transplantation.
ASAN’s toolkit on ending discrimination in organ transplantation provides resources for advocacy both on an individual and a system-wide basis.
ASAN’s toolkit on organ transplantation is the first of four upcoming toolkits for advocates on health care issues facing the disability community. These toolkits were made possible by funding from the Special Hope Foundation.
We hope that you find our toolkit useful and distribute it widely. Please send any concerns, feedback, or comments on how you plan to use the toolkit to ASAN’s Director of Public Policy, Samantha Crane, at firstname.lastname@example.org.
Go to ASAN source .
News: Confirmed — Autistic kids have poorer sleep quality
BMJ Group Media Centre News Release | London, UK | September 30, 2013 — Autistic children sleep duration is shorter and they are more prone to frequent waking at night. Poor quality sleep may affect daytime learning and behaviour, say the authors.
Children with autistic spectrum disorders have poorer sleep quality than their peers right up to their teens, reveals research published online in the Archives of Disease in Childhood.
Total sleep duration is shorter and punctuated by more frequent waking at night, the research shows. Poor quality sleep may affect daytime learning and behaviour, say the authors.
Disrupted sleep patterns have been linked to autism before, but the quality of the evidence accumulated to date has often been compromised by small sample size, lack of agreed definitions, and poor comparability of study participants.
The authors of this study instead base their findings on long term data derived from the Avon Longitudinal Study of Parents and Children (ALSPAC), which has been tracking the health and development of more than 14,000 children born in 1991-2 in South West England.
All the parents were quizzed about their children’s sleeping patterns when their kids were 6, 18, 30, 42, 69, 81, 115 and 140 months old, including when their children routinely went to bed and woke up on week days, and how much time they spent sleeping during the daytime.
The researchers also took account of other key information, including the results of validated questionnaires on social and communication skills (SCDC) and intelligence (WISC-III) when the children were 7 years old.
Eighty six of the children had been diagnosed with autistic spectrum disorders by the time they were 11 years old. Thirty had classic autism; 15 had atypical autism; and 23 had Asperger’s syndrome.
The final analysis was based on 39 children with autistic spectrum disorders and 7043 typical children for whom complete data across all time points were available.
This showed that before the age of 30 months, there was no major difference in sleeping patterns between the two groups of children. But from 30 months onwards, children with autistic spectrum disorders tended to sleep less in total, with the greatest discrepancy (43 minutes) persisting up to 140 months of age.
Although the gap in total sleep narrowed after this point, autistic children still slept around 20 fewer minutes each day than their typical peers by the time they reached their teens.
These differences remained even after taking account of influential factors, such as prematurity, low birthweight, maternal education, and social class.
These differences were wholly due to the length of night-time sleep, which was shortened by frequent bouts of wakefulness.
From the age of 30 months onwards, children with autistic spectrum disorders were significantly more likely to wake three or more times a night than their typical peers, a difference that became even more noticeable the older the children became.
By the time the children were 81 months old, more than one in 10 of those with autistic spectrum disorders were waking three or more times a night compared with just 0.5% of their peers.
An increasing body of data also suggests that production of the sleep hormone melatonin may be impaired in some children with autistic spectrum disorders, which may explain disturbed sleep patterns, suggest the authors.
But it’s unclear just what impact this shortened sleep pattern may have, they acknowledge. But they point out that other researchers have suggested that sleep loss may have impact on neuronal development.
“If this hypothesis of cumulative sleep reduction resulting in neuronal loss is confirmed, then clinically [children with autism] might gain from even a small consistent increase in total sleep time,” they write.
News: Obamacare and the I/DD Community
The Autistic Self Advocacy Network has written a policy brief on the impact that Obamacare will have on our community. The brief titled “The Affordable Care Act and the I/DD Community, An Overview of the Law and Advocacy Priorities Going Forward” was written by Ari Ne’eman. The 17 page report discusses the impact of the Affordable Care Act on the disability community and needs not yet met.
|Source:||ASAN Policy Brief: What Impact will the Affordable Care Act have on People with I/DD?
News: Is this the meaning of ‘Goodwill’?
Petition by The Autistic Self Advocacy Network
From Change.org — Goodwill Industries pays thousands of workers with disabilities less than minimum wage by exploiting a provision in the Fair Labor Standards Act left over from the 1930s. Sec 14 (c) allows corporations to pay people with disabilities a subminimum wage. According to Labor Department records, Goodwill pays some of its disabled workers as low as 22, 38 and 41 cents per hour. This is wrong: disabled workers at Goodwill deserve to be paid a living wage.
It’s not well known that Goodwill is a multibillion-dollar company whose executives make six-figure salaries. They don’t need to pay disabled people subminimum wages when salaries for the CEOs Goodwill franchises across America total more than $30 million.
For more infor or to sign this petition goto
Change.org: Goodwill Industries International: Pay Disabled Workers a Real Wage
News: Air Pollution Exposure May Cause Autism
Boston, MA, June 18, 2013 — Women in the U.S. exposed to high levels of air pollution while pregnant were up to twice as likely to have a child with autism as women who lived in areas with low pollution, according to a new study from Harvard School of Public Health (HSPH). It is the first large national study to examine links between autism and air pollution across the U.S.
“Our findings raise concerns since, depending on the pollutant, 20% to 60% of the women in our study lived in areas where risk of autism was elevated,” said lead author Andrea Roberts, research associate in the HSPH Department of Social and Behavioral Sciences.
The study appeared online June 18, 2013 in Environmental Health Perspectives.
Exposure to diesel particulates, lead, manganese, mercury, methylene chloride and other pollutants are known to affect brain function and to affect the developing baby. Two previous studies found associations between exposure to air pollution during pregnancy and autism in children, but those studies looked at data in just three locations in the U.S.
The researchers examined data from Nurses’ Health Study II, a long-term study based at Brigham and Women’s Hospital involving 116,430 nurses that began in 1989. Among that group, the authors studied 325 women who had a child with autism and 22,000 women who had a child without the disorder. They looked at associations between autism and levels of pollutants at the time and place of birth. They used air pollution data from the U.S. Environmental Protection Agency to estimate women’s exposure to pollutants while pregnant. They also adjusted for the influence of factors such as income, education, and smoking during pregnancy.
The results showed that women who lived in the 20% of locations with the highest levels of diesel particulates or mercury in the air were twice as likely to have a child with autism as those who lived in the 20% of areas with the lowest levels.
Other types of air pollution—lead, manganese, methylene chloride, and combined metal exposure—were associated with higher autism risk as well. Women who lived in the 20% of locations with the highest levels of these pollutants were about 50% more likely to have a child with autism than those who lived in the 20% of areas with the lowest concentrations.
Most pollutants were associated with autism more strongly in boys than girls. However, since there were few girls with autism in the study, the authors said this finding should be examined further.
Senior author Marc Weisskopf, associate professor of environmental and occupational epidemiology at HSPH, said, “Our results suggest that new studies should begin the process of measuring metals and other pollutants in the blood of pregnant women or newborn children to provide stronger evidence that specific pollutants increase risk of autism. A better understanding of this can help to develop interventions to reduce pregnant women’s exposure to these pollutants.”
Other HSPH authors included Alberto Ascherio, professor of epidemiology and nutrition; Kristen Lyall, visiting scientist in the Department of Nutrition; Jaime Hart, instructor in the Department of Environmental Health; Francine Laden, Mark Winkler and Catherine Winkler Associate Professor of Epidemiology in the Department of Epidemiology; Allan Just, research fellow in the Department of Environmental Health; and Jennifer Bobb, research fellow in the Department of Biostatistics.
Support for the study came from DOD W81XWH-08-1-0499, USAMRMC A-14917, NIH T32MH073124-08, P60AR047782 and R01ES017017-04. The Nurses’ Health Study II is funded in part by NIH CA50385.
For more information: Todd Datz, 617.432.8413, tdatz @ hsph.harvard.edu
Reference: Roberts, Andrea L.; Lyall, Kristen; Hart, Jaime E.; Laden, Francine; Just, Allan C.; Bobb, Jennifer F.; Koenen, Karestan C.; Ascherio, Alberto; and Weisskopf, Marc G. | Perinatal Air Pollutant Exposures and Autism Spectrum Disorder in the Children of Nurses’ Health Study II Participants | Environmental Health Perspectives | online June 18, 2013 @ http://ehp.niehs.nih.gov/1206187/.
|Links:||Environmental Health Perspectives: Press Release
Environmental Health Perspectives: Journal Article