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Wednesday, June 26, 2019

House Passes EMPOWER Care Act

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities.  

A June 19 release from Rep. Debbie Dingell (D-MI): 
The House of Representatives passed bipartisan legislation by Congresswoman Debbie Dingell (D-MI) that makes it easier for seniors and the disabled to receive care in their preferred setting without facing bankruptcy or significant financial hardship. Congressmen Fred Upton (R-MI) and Brett Guthrie (R-KY) let similar bills with Dingell to strengthen long-term care and aging policies.
The Empowering Beneficiaries, Ensuring Access and Strengthening Accountability Act of 2019 extends critical programs within Medicaid for 4.5 years including the Money Follows the Person (MFP) demonstration program and extends spousal impoverishment protections for beneficiaries receiving long-term care in a home or community care setting. The MFP program allows certain Medicaid users, such as seniors and individuals with disabilities, to transition from a nursing home or institutional care back to their home. Since the MFP program was created over a decade ago, it has successfully helped over 88,000 individuals receive care in their own homes. The MFP program does not require people to leave institutional care; rather, it allows individuals who choose to go home to do so. Spousal impoverishment financial protections erase the institutional bias that has led seniors to choose more costly nursing homes over impoverishment.

"This nation’s long-term care system is broken. I understand the challenges better than many. Seniors, families, and caregivers are often desperate, stressed, and don’t know where to turn,” Dingell said. "This strong, bipartisan, and long-term extensions of the Money Follows the Person program and spousal impoverishment protections will create better outcomes for people receiving long-term care in the home or in the community. We will never stop pushing for long-term care and aging policies that allow seniors to age with dignity in the setting best for them.”

...
“The Arc of the United States congratulates the strong group of bipartisan co-sponsors, on the passage of the Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019 (H.R. 3253). This bill includes funding for the Money Follows the Person Program for 4.5 years. These funds will ensure that people with disabilities can leave institutions and return back home to their communities. This program has strong data that shows better quality of life for beneficiaries and cost-savings for Medicaid, a win/win. We thank Representative Dingell for her continued leadership on ensuring more opportunities for people with disabilities and aging Americans to have home and community-based long-term services and supports,” said Nicole Jorwic, Senior Director of Public Policy, The Arc of the United States.

Tuesday, June 25, 2019

Processed Foods


From the University of Central Florida:
With the number of children diagnosed with autism on the rise, the need to find what causes the disorder becomes more urgent every day. UCF researchers are now a step closer to showing the link between the food pregnant women consume and the effects on a fetus' developing brain.
Drs. Saleh Naser, Latifa Abdelli and UCF undergraduate research assistant Aseela Samsam have identified the molecular changes that happen when neuro stem cells are exposed to high levels of an acid commonly found in processed foods. In a study published June 19 in Scientific Reports, a Nature journal, the UCF scientists discovered how high levels of Propionic Acid (PPA), used to increase the shelf life of packaged foods and inhibit mold in commercially processed cheese and bread, reduce the development of neurons in fetal brains.
Dr. Naser, who specializes in gastroenterology research at the College of Medicine's Burnett School of Biomedical Sciences, began the study after reports showed that autistic children often suffer from gastric issues such as irritable bowel syndrome. He wondered about a possible link between the gut and the brain and began examining how the microbiome -- or gut bacteria -- differed between people with autism and those who do not have the condition.
"Studies have shown a higher level of PPA in stool samples from children with autism and the gut microbiome in autistic children is different," Dr. Naser said. "I wanted to know what the underlying cause was."
In the lab, the scientists found exposing neural stem cells to excessive PPA damages brain cells in several ways. First, the acid disrupts the natural balance between brain cells by reducing the number of neurons and over-producing glial cells. While glial cells help develop and protect neuron function, too many glia cells disturb connectivity between neurons. They also cause inflammation, which has been noted in the brains of autistic children.
Excessive amounts of the acid also shorten and damage pathways that neurons use to communicate with the rest of the body. The combination of reduced neurons and damaged pathways impede the brain's ability to communicate, resulting in behaviors that are often found in children with autism, including repetitive behavior, mobility issues and inability to interact with others.
Previous studies have proposed links between autism and environmental and genetic factors, but Drs. Naser and Abdelli say their study is the first to discover the molecular link between elevated levels of PPA, proliferation of glial cells, disturbed neural circuitry and autism. The 18-month study was self-funded by UCF.
PPA occurs naturally in the gut and a mother's microbiome changes during pregnancy and can cause increases in the acid. But Drs. Naser and Abdelli said eating packaged foods containing the acid can further increase PPA in the woman's gut, which then crosses to the fetus.
More research needs to be done before drawing clinical conclusions. Next, the research team will attempt to validate its findings in mice models by seeing if a high PPA maternal diet causes autism in mice genetically predisposed to the condition. There is no cure for autism, which affects about 1 in 59 children, but the scientists hope their findings will advance studies for ways to prevent the disorder.
"This research is only the first step towards better understanding of Autism Spectrum Disorder," the UCF scientists concluded. "But we have confidence we are on the right track to finally uncovering autism etiology."

Monday, June 24, 2019

1077 Measles Cases in 2019 So Far

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  TwitterFacebook, and other social media platforms have helped spread this dangerous myth.

From CDC: "From January 1 to June 20, 2019, 1,077** individual cases of measles have been confirmed in 28 states. This is an increase of 33 cases from the previous week. This is the greatest number of cases reported in the U.S. since 1992 and since measles was declared eliminated in 2000."

 Pam Belluck and Reed Abelson at NYT:
There were about two claims of injury for every one million doses of all vaccines distributed in the United States from 2006 through 2017, the period for which the injury compensation program has dosage data. It says more than 3.4 billion vaccine doses were distributed during that time.
The rarity of claims is especially notable because the program aims to make it easy to file a petition. It frequently pays claimants’ fees for lawyers and expert witnesses, whether the claim is compensated or not, said Dr. Narayan Nair, who oversees the program as director of the Department of Health and Human Services’s division of injury compensation programs.
...
One condition that is not on the list of potential vaccine-related effects is autism. In the early 2000s, after a now-debunked study attempted to link autism to vaccines, the program received several thousand claims. The matter was exhaustively evaluated for several years by federal courts, which ultimately ruled that evidence showed autism is not caused by vaccines and is not a legitimate claim for the injury program. Autism-related claims were dismissed.
...
A growing proportion of recent claims, about half of all petitions since 2017, do not involve the content of vaccines themselves. Instead, they refer to shoulder injuries, usually in adults, that occurred because a health provider injected a vaccine too high on the shoulder, or into the joint space instead of into muscle tissue. That may cause an inflammatory response leading to shoulder pain and limited motion.

Friday, June 21, 2019

People with Disabilities in Areas of Armed Conflict


From the United Nations:
Acting unanimously today, the Security Council adopted its first-ever resolution calling upon Member States and parties to armed conflict to protect persons with disabilities in conflict situations and to ensure they have access to justice, basic services and unimpeded humanitarian assistance.
By the terms of resolution 2475 (2019), the 15-member Council called upon all parties to armed conflict to allow and facilitate safe, timely and unimpeded humanitarian access to all people in need of assistance. It further urged them to prevent violence and abuses against civilians in situations of armed conflict, including those involving in killing and maiming, abduction and torture, as well as rape and other forms of sexual violence in conflict and post-conflict situations.
The Council emphasized the need for States to end impunity for criminal acts against civilians, including those with disabilities, and to ensure they have access to justice and effective remedies, and as appropriate, reparation. It called upon all parties to armed conflict to allow and facilitate safe, timely and unimpeded humanitarian access.
Encouraging Member States to ensure that persons with disabilities enjoy equal access to basic services, including education, health care, transportation and information and communications technology (ICT) and systems, the Council further urged States to enable the meaningful participation and representation of persons with disabilities, including their representative organizations, in humanitarian action and in conflict prevention, resolution, reconciliation, reconstruction and peacebuilding.
Further by the resolution, the Council urged Member States to take steps to eliminate discrimination and marginalization on the basis of disability in situations of armed conflict. It also urged States parties to comply with their obligations under the 2006 Convention on the Rights of Persons with Disabilities.

Thursday, June 20, 2019

Underreporting of Restraint and Seclusion

In The Politics of Autismdiscuss the use of restraint and seclusion.  Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

The Government Accountability Office has a new report titled "Education Should Take Immediate Action to Address Inaccuracies in Federal Restraint and Seclusion Data."  Highlights:
GAOs' review found that data the Department of Education (Education) uses in its enforcement of civil rights laws does not accurately or completely reflect all incidents of restraint and seclusion of public school students. Education has stated that restraint and seclusion should only be used when a child's behavior poses imminent danger of serious physical harm to self or others. GAO's review of the most recent Civil Rights Data Collection (CRDC), school year 2015-16, found that 70 percent of the more than 17,000 school districts in the U.S. reported zero incidents of restraint and zero incidents of seclusion. However, GAO's analysis and documents from Education showed substantial evidence that nine of the 30 largest districts (those with more than 100,000 students) inaccurately reported zeros when they actually had incidents or did not have the data. Moreover, Education officials have said very large districts are likely to have incidents of restraint and seclusion. For example, Fairfax County Public Schools in Virginia, which has about 186,000 students, reported zero incidents in school year 2015-16 but recently acknowledged that it had over 1,600 incidents of restraint or seclusion in school year 2017-18.
Documents from Education also showed that several of the very largest school districts reporting zero incidents were instead not collecting data on restraint and seclusion for the CRDC at all, contrary to Education's guidance and policy. While Education requires districts to provide plans for collecting data that are missing or incomplete, GAO found that several of the largest districts reporting zero either did not provide plans or provided incomplete plans. These districts were able to bypass the CRDC system requirement to submit plans because they reported zero incidents instead of leaving the fields blank to indicate the data were missing. Education created a tip sheet to instruct districts on when to report zeros and how to report that data are not available, but the tip sheet is difficult to find on the CRDC website and not available on the screen where districts submit data. Further, Education has not corrected the data for the nine largest districts that inaccurately reported zero restraints and seclusions.
While it is difficult to know the full extent of underreporting, the problems that GAO found with the largest districts reporting zero incidents when in fact the data were missing raise questions as to whether other school districts correctly reported zero incidents of restraint and seclusion. GAO found documents from Education that indicated other, smaller districts also might have misreported zeroes.
Education describes its civil rights data as a key part of its enforcement strategy to protect students from discrimination and ensure equal access to education. Without adequate systems in place to ensure the accurate, complete reporting of restraint and seclusion data, districts may continue to erroneously report zero incidents and Education may be hindered in its enforcement of civil rights laws.

Wednesday, June 19, 2019

Antivax Funders

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  TwitterFacebook, and other social media platforms have helped spread this dangerous myth.

 Lena H. Sun and Amy Brittain at WP report that a wealthy couple in Manhattan has given more than $3 million to antivaccine groups. They helped finance the infamous "documentary" titled Vaxxed.
Hedge fund manager and philanthropist Bernard Selz and his wife, Lisa, have long donated to organizations focused on the arts, culture, education and the environment. But seven years ago, their private foundation embraced a very different cause: groups that question the safety and effectiveness of vaccines.
How the Selzes came to support anti-vaccine ideas is unknown, but their financial impact has been enormous. Their money has gone to a handful of determined individuals who have played an outsize role in spreading doubt and misinformation about vaccines and the diseases they prevent. The groups’ false claims linking vaccines to autism and other ailments, while downplaying the risks of measles, have led growing numbers of parents to shun the shots. As a result, health officials have said, the potentially deadly disease has surged to at least 1,044 cases this year, the highest number in nearly three decades.
The Selz Foundation provides roughly three-fourths of the funding for the Informed Consent Action Network, a three-year-old charity that describes its mission as promoting drug and vaccine safety and parental choice in vaccine decisions.
...
Tax filings for the couple’s charitable foundation show they began supporting the movement in 2012, when they gave $200,000 to a legal fund for Andrew Wakefield, one of the most important anti-vaccine activists.

Tuesday, June 18, 2019

Chlorine Dioxide

 In The Politics of Autism, I discuss autism quackery.  One particularly dangerous"cure" involves bleach.

Brandy Zadrozny at NBC:
The chlorine dioxide Laurel Austin gives to her sons is made by mixing a sodium chlorite solution with an acid activator — both of which are available online for about $20. The solution was first promoted almost two decades ago by a former Scientologist, Jim Humble, as the “Miracle Mineral Solution,” or MMS for short, and sold as a cure for AIDS, cancer and almost every other disease known to humanity.
Doctors say chlorine dioxide’s only effects are harmful, warning that it can damage tissues in the digestive system, disrupt the functioning of red blood cells and lead to kidney failure.
Kerri Rivera, a former Chicago real estate agent who is not a doctor, latched onto the so-called cure and began suggesting it to parents of autistic children around 2012, writing a book and appearing at seminars and on popular conspiracy theorists’ YouTube channels at a time when autism diagnoses were skyrocketing. Rivera declined to comment.
...
 Over the last five years, poison control centers have managed 16,521 cases nationwide dealing with chlorine dioxide, according to data provided by the American Association of Poison Control Centers. At least 50 of the cases were considered life-threatening, and eight people died. It’s not clear how many of the cases involved people with autism.
...
Laurel Austin showed the police online articles about chlorine dioxide, including one from the Autism Research Institute, one of the first and most vocal organizations to push the discredited theory that vaccines cause autism. That 2015 article claimed the solution had the potential to heal, but ultimately advised against its use, according to investigation notes. “This legitimizes the claim by Laurel of her use of MMS CLO2 as a holistic treatment approach,” the officer wrote. Laurel Austin followed up with the officer by sending a link to a YouTube video of Rivera explaining the chlorine dioxide protocol.

Monday, June 17, 2019

1044

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread.

From CDC:
From January 1 to June 13, 2019, 1,044** individual cases of measles have been confirmed in 28 states. This is an increase of 22 cases from the previous week. This is the greatest number of cases reported in the U.S. since 1992 and since measles was declared eliminated in 2000.

Sunday, June 16, 2019

Fathers and Autism

 In The Politics of AutismI discuss the role of families.  Most of the literature on fatherhood and autism is about paternal age as a "risk factor."

Literature in developmental psychology suggests that mothers and fathers both play unique and important roles in their children’s development. However, research investigating the unique contributions and psychological functioning of fathers of youth with developmental disabilities, and the role that fathers play in effective intervention, remains limited. Whereas evidence suggests that parent-mediated interventions for children with autism spectrum disorder (ASD) can lead to increased engagement from parents, and reduced stress and psychopathology commonly experienced by parents of youth with ASD, these interventions often do not specifically address potential benefits of paternal involvement. This systematic review aimed to understand how often/how commonly research on children with ASD examines the father’s role within the family, how often fathers are targeted directly during intervention efforts, and the impact of increased paternal involvement. This review suggests that fathers of children with ASD are not often included in research on children with ASD, in either their general involvement or in their inclusion in intervention. While studies generally suggest that these fathers may be less involved than mothers in childrearing practices, having both parents highly involved may improve the overall family system across many levels, and fathers may be equally as effective as mothers in implementing intervention strategies. Overall, this review suggests that while often overlooked, fathers of youth with ASD make important contributions to children with ASD and the larger family and should be included in future research on children with ASD.

Saturday, June 15, 2019

"School-to-Guardianship Pipeline"

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities. 

In a recently released report, new federal research examining guardianships of people with intellectual and developmental disabilities (ID/DD) finds data supporting the existence of a "school-to-guardianship pipeline" that results in people with ID/DD being placed under guardianships from their earliest years of majority rather than exploring use of less restrictive decision-making supports.
Under guardianship, an individual can have the following rights removed: the right to marry; the right to determine one's own friends; the right to vote; the right to seek or retain employment; the right to consent to a medical procedure, including a sterilization or abortion; the right to drive; the right to decide where to live; and many others.
In its latest report about these and other related findings, the National Council on Disability (NCD) – an independent federal agency that advises Congress, the President, and other federal agencies, found that school officials may be biasing parents toward pursuing guardianships over their adult children with disabilities because of the manner in which they are conveying information – and without understanding the legal implications of guardianship. Schools are the number one referral source for guardianship and a full 58 percent of people with ID/DD ages 18-22 receiving publicly funded services have guardians, most of whom will remain under guardianships for decades to come – many unnecessarily.

NCD's newest research examines whether the increased risk for people with ID/DD being under guardianships may be linked to the different ways in which states apply their guardianship laws, as well as to assumptions about the abilities of people with ID/DD to fully experience the dignity of risk. The research goes on to examine how being under a guardianship impacts one's ability to benefit from key civil rights laws. NCD's report, which relied heavily on key informant interviews and analysis of applicable existing data sets, also provides an in-depth analysis of the experience of people with ID/DD under guardianships in Washington, D.C., before and after recent guardianship reforms.
The report concludes by offering policy recommendations to states, the Social Security Administration, the U.S. Department of Education, the U.S. Department of Justice, the U.S. Department of Health and Human Services, and state courts.
Among the recommendations, NCD calls on DOJ to issue guidance to states on their legal obligations under the ADA in the context of ensuring that guardianship be a last resort imposed only after less-restrictive alternatives have been determined to be inappropriate or ineffective; and calls on ED to do more to promote its existing guidance that recognizes the serious implications of guardianship and encourages schools to recognize less restrictive decision making supports for adults in special education.

Read the report at ncd.gov/publications/2019/turning-rights-into-reality.

Friday, June 14, 2019

RIT Program for Autistic Students

In The Politics of Autism, I discuss the growing number of college students on the spectrum

Jeremy Bauer-Wolf at Inside Higher Ed:
About a decade ago, an influx of students diagnosed with autism spectrum disorder surprised officials at Rochester Institute of Technology’s Disability Services Office. The students had questions beyond the usual accommodations. They wanted to know how to deal with a snippy roommate or professor, or they just had problems communicating.
The presence of so many students with autism was unremarkable for RIT. The university is home to the well-known National Technical Institute for the Deaf, so the college was already used to teaching in different styles for students with disabilities. And students with autism are often attracted to computing and other STEM-centric programs -- RIT’s specialty. 
Officials have registered 200 students with autism with disability services in the last academic year. Because students are not obligated to report their disabilities, those with autism are likely underrepresented in that figure. RIT’s total population is a little more than 19,000 students.
The institution wanted to do more for students on the spectrum, and with a two-year, $200,000 National Science Foundation grant, officials in 2008 launched a program designed specifically for them -- one that would provide students with autism with weekly coaching on all facets of college life.
Ten years later, the Spectrum Support Program has become a cornerstone at RIT, an initiative that grew organically and rapidly simply through word of mouth, said Laurie Ackles, the program’s director.

Thursday, June 13, 2019

Jessica Biel

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  TwitterFacebook, and other social media platforms have helped spread this dangerous myth.

Antivaxxers usually claim that they are pro-vaccineEven Jenny McCarthy has said that she is pro-vaccine. That is just not true.

Melissa Matthews at Yahoo:
Jessica Biel wants you to know that she not anti- vaccinations. Yesterday, the 37-year-old actress was dubbed an "anti-vaxxer" by some outlets after she spoke to California legislators about about proposed bill #SB277. Today, she claims to be pro-choice when it comes to vaccinations in an Instagram post.
The whole thing began on the social media channel when environmental activist Robert F. Kennedy Jr., posed for several photos with Biel captioned, "Please say thank you to the courageous @jessicabiel for a busy and productive day at the California State House."

The pair went to Sacramento to lobby against SB 276, a California state bill that proposes to require approval from a state public health officer when seeking medical exemptions for vaccinations.
News of Biels' visit has gone viral on social media and media outlets. This morning, the actress responded to claims that she is an "anti-vaxxer" in an Instagram post:
"I am not against vaccinations - I support children getting vaccinations and I also support families having the right to make educated medical decisions for their children alongside their physicians. My concern with #SB277 is solely regarding medical exemptions...

Wednesday, June 12, 2019

Generation Rescue Rebrands

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  TwitterFacebook, and other social media platforms have helped spread this dangerous myth.

Anna Merlan at Jezebel:
Generation Rescue, the charity whose public face and board president is actor Jenny McCarthy, and which promotes debunked and sometimes dangerous treatments for autistic children, seems to rebranding away from the subject of autism and towards a much more broad set of medical issues. Sometime in May, the Generation Rescue website was taken offline, replaced with a page that reads, simply, “Stay tuned for what’s next.”
Even before the site disappeared, there were signs that McCarthy and Generation Rescue hoped to retool the organization into a “functional medicine” nonprofit, rather than one focused on the controversial and non-scientific autism recovery claims they’ve made for years. The apparent rebrand feels almost Goop-esque, a way for McCarthy and the organization to enter a much broader and less clearly defined “wellness” space, where many more kinds of questionable pseudoscience are possible.

Generation Rescue was founded by a businessman named J.B. Handley, who, like McCarthy, claims that vaccines cause autism. (Both Handley and his wife Lisa, like McCarthy, have claimed that one of their three children developed autism after being vaccinated. Yet another enormous studypublished in March has thoroughly refuted the idea that vaccines cause autism.

Tuesday, June 11, 2019

1022 Measles Case: Time to Act

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread.

From January 1 to June 6, 2019, 1,022 individual cases of measles have been confirmed in 28 states. This is an increase of 41 cases from the previous week. This is the greatest number of cases reported in the U.S. since 1992 and since measles was declared eliminated in 2000.
Matthew Crane at The Sacramento Bee:
At a time when vaccination standards have been thrust into the spotlight by Senate Bill 276 and remain a point of national fixation, Gov. Gavin Newsom’s recent comments are deeper than political pandering to a target demographic. The remarks represent more than an everyday gaffe. They are outright irresponsible and emblematic of how policymakers and public health agents have responded to the anti-vaccination movement.
Recently, Newsom indicated concern with the role of government in SB 276. He contends that, though he believes in the importance of vaccinations, he holds reservations about inserting bureaucracy into the “very personal” decision whether to vaccinate one’s children.
The persistence of the anti-vaccination public health catastrophe can be squarely attributed to such ineffectual and poorly informed comments.
 Elizabeth Cohen, John Bonifield and Debra Goldschmidt at CNN:
Health authorities in New York say they've faced formidable challenges to quell the current outbreak: anti-vaxers who specifically targeted the state's ultra-Orthodox Jewish community, bombarding them with lies that vaccines cause autism.
"We are now countering not only the vector of the measles virus, but we're countering the vector of the anti-vaxers, and that message - that insidious message -- is just as challenging as the most contagious virus on the face of the earth," said Dr. Oxiris Barbot, the commissioner of the New York City Department of Health and Mental Hygiene.
New York health authorities face an additional challenge: ultra-Orthodox Jews travel frequently to Israel and Europe, where there have been more than 100,000 measles cases this year.
When the Disneyland measles outbreak occurred in California in 2014, the state moved swiftly. Within a few months, lawmakers introduced and passed legislation getting rid of religious and philosophical exemptions for vaccines. Now, schoolchildren in California have to be vaccinated unless they have a medical excuse.
Similar bills have languished in the New York legislature since January.

Monday, June 10, 2019

Divisions in Autism

In The Politics of Autism, I discuss divisions and factions within the autism community.
To the extent that the stakeholders form a “community,” it is a quarrelsome one. James Madison identified the causes of faction, including a zeal for different ideas and interests.  In autism politics, the factional disagreements are diverse and deep.    Emotions run high because the stakes are high. Few things are more frightening to parents than not knowing whether a child will ever be able to live independently, indeed to survive without them.  For people with autism, the issue involves their very identity.  

Jonathon Rose at History News Network:
One also has to be mindful that the autism community is riven by ideological divisions, and the unwary researcher may be caught in the crossfire. For instance, if you invite an autistic individual to tell their own story, they might say something like this:
As a child, I went to special education schools for eight years and I do a self-stimulatory behavior during the day which prevents me from getting much done. I’ve never had a girlfriend. I have bad motor coordination problems which greatly impair my ability to handwrite and do other tasks. I also have social skills problems, and I sometimes say and do inappropriate things that cause offense. I was fired from more than 20 jobs for making excessive mistakes and for behavioural problems before I retired at the age of 51.
Others with autism spectrum disorder have it worse than I do. People on the more severe end sometimes can’t speak. They soil themselves, wreak havoc and break things. I have known them to chew up furniture and self-mutilate. They need lifelong care.[7]
This is an actual self-portrait by Jonathan Mitchell, who is autistic. So you might conclude that this is an excellent example of the disabled writing their own history, unflinchingly honest and compassionate toward the still less fortunate, something that everyone in the autism community would applaud. And yet, as Mitchell goes on to explain, he has been furiously attacked by “neurodiversity” activists, who militantly deny that autism is a disorder at all. They insist that it is simply a form of cognitive difference, perhaps even a source of “genius”, and they generally don’t tolerate any discussion of curing autism or preventing its onset. When Mitchell and other autistic self-advocates call for a cure, the epithets “self-haters” and “genocide” are often hurled at them. So who speaks for autism? An interviewer who describes autism as a “disorder”, or who even raises the issues that Mitchell freely discussed, might well alienate a neurodiversity interview

Sunday, June 9, 2019

Autistic Woman Is a Contestant for Miss Florida

In The Politics of Autism, I discuss depictions of ASD in popular cultureAutistic people continue to smash stereotypes.

Ray Sanchez at CNN:
Growing up with autism, Rachel Barcellona was told to limit her expectations.
"I was basically promised that I would never graduate any school really or have any friends," she told CNN affiliate WFLA. "Pretty much everything bad was going to happen to me because I have autism."
Later this month, Barcellona, 22, will make history as the first contestant with autism to take the stage of the Miss Florida pageant.
"I want to use my voice to inspire hope to others," Barcellona told CNN affiliate WFTS in April after being selected to speak at the United Nations for World Autism Day.
...
On the website of the Dyspraxia Foundation USA, Barcellona wrote that she has Asperger's syndrome, loves to sing opera and hopes one day to open a school for children with disabilities. She also described her struggles with epilepsy, the neurological disorder dyspraxia, and the learning disorder dyscalculia.
"The phrase, 'You don't look autistic,' I get that all the time," Barcellona told WFTS. "And I just want to say, 'What does autism look like to you?'"

Saturday, June 8, 2019

Trump Has Not Changed His Position on Vaccines

In The Politics of Autism, I discuss the issue's role in presidential campaigns. In the 2016 campaign, a number of posts discussed Trump's support for the discredited notion that vaccines cause autism. He also has a bad record on science and disability issues more generally.

In response to a question, Trump recently said that parents should get vaccinations for their children. Some reports suggested that he was changing his position, but he was not. He has always claimed to be "pro-vaccine," but he has told parents to space out vaccinations. Many antivax activists make the same claim. But "spacing out" vaccines is harmful advice.

Autism has become an epidemic. Twenty-five years ago, 35 years ago, you look at the statistics, not even close. It has gotten totally out of control.
I am totally in favor of vaccines. But I want smaller doses over a longer period of time. Because you take a baby in -- and I've seen it -- and I've seen it, and I had my children taken care of over a long period of time, over a two or three year period of time.
Same exact amount, but you take this little beautiful baby, and you pump -- I mean, it looks just like it's meant for a horse, not for a child, and we've had so many instances, people that work for me.
Just the other day, two years old, two and a half years old, a child, a beautiful child went to have the vaccine, and came back, and a week later got a tremendous fever, got very, very sick, now is autistic.
I only say it's not -- I'm in favor of vaccines, do them over a longer period of time, same amount.

Amid a growing measles outbreak, more parents are choosing to alter the recommended vaccine schedule for their children in hopes of not overwhelming their immune systems, a practice doctors say could be just as risky as not vaccinating at all.

Dr. Paul Offit, a physician in the Division of Infectious Diseases and Director of the Vaccine Education Center at Children's Hospital of Philadelphia, told the Washington Examiner he has seen an uptick in parents asking whether they should alter the vaccine schedule recommended by the Centers for Disease Control and Prevention.

He tells parents that delaying vaccines doesn’t lessen any possible side effects from vaccines themselves, but rather that “it increases the amount of time that your child is vulnerable.”
...

Dr. Peter Hotez, dean of the National School of Tropical Medicine at Baylor College of Medicine in Houston and co-director of the Texas Children’s Hospital Center for Vaccine Development, has also seen an increase in parents asking about delaying vaccines. He told the Washington Examiner that spacing out doses is “all risk and no benefit.”

“The bottom line is that in spacing vaccines apart, parents only increase the likelihood that the vaccines won’t work,” Hotez said. “A lot of it is based on a theory with no evidence that giving vaccines close together overwhelms the immune system.”

Friday, June 7, 2019

Autism, Measles, Vaccines, and Quackery

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread.

On June 5, 2019, the Centers for Disease Control and Prevention (CDC) reported that the number of measles cases nationwide so far in 2019 was 1,001. 

Ed Pilkington at The Guardian:
Thousands of American children are being put on homeopathic alternatives to vaccination by practitioners who claim they can prevent measles and “cure” autism, the Guardian has learned.
At least 200 homeopaths in the US are practicing a controversial “therapy” known as Cease that falsely asserts that it has the power to treat and even cure autism. The acronym stands for Complete Elimination of Autistic Spectrum Expression.
The “therapy” relies in part on administering high doses of vitamin C. Advocates falsely say it repairs the harm caused by vaccination – a double untruth as most vaccines are safe and there is no link between vaccines and autism, a condition for which there is no cure.

In addition 250 homeopaths, some of whom also practice Cease, are promoting “homeoprophylaxis” that advertises itself as an “immunological education program”. More than 2,000 American children have been put on the program which claims to build natural immunity against infectious diseases, though there is no scientific evidence that it works.
From the Public Policy Institute of California:
 As the US confronts its worst measles outbreak in more than 20 years, the California Legislature is considering a bill (Senate Bill 276) that would tighten the state’s already strict school immunization law. SB 276 would create a standardized form for parents seeking to medically exempt their children from vaccination and would require state review and tracking of exemption requests.
An overwhelming majority of adults (73%) think that parents should be required to vaccinate their children. Asked about child vaccines to prevent measles, mumps, and rubella, 62 percent of adults say these vaccines are very safe, and another 27 percent say they are somewhat safe. An overwhelming majority (79%) are concerned that the recent outbreak of measles will become more widespread (43% very concerned, 36% somewhat concerned).