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Wednesday, February 28, 2018

Senate Candidacy for Person Who Hates Autistic People?

In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's  bad record on science and disability issues more generally.  A Trump cheerleader is considering a Senate race in California.

Sarah D. Wire at The Los Angeles Times:
Far-right radio host and author Michael Savage says that “very important people” have asked him to run for U.S. Senate in California.

“Some very important people have come to me and said ‘Savage, would you like to run as an independent for the U.S. Senate in the state of California against the esteemed Dianne Feinstein?’” Savage said on his show, “The Savage Nation,” Friday. “I’m asking you should I run or not run?”
Savage is infamous for his verbal attacks on people with autism.

On July 22, 2008, Jacques Steinberg reported at The New York Times:
Michael Savage, the incendiary radio host who last week characterized nearly every child with autism as “a brat who hasn’t been told to cut the act out,” said in a telephone interview on Monday that he stood by his remarks and had no intention of apologizing to those advocates and parents who have called for his firing over the matter.
“My main point remains true,” Mr. Savage, whose radio audience ranks in size behind only those of Rush Limbaugh and Sean Hannity, said in the interview. “It is an overdiagnosed medical condition. In my readings, there is no definitive medical diagnosis for autism.”
On the July 16 installment of his program, which is broadcast every weekday, Mr. Savage suggested that “99 percent of the cases” of autism were a result of lax parenting. He told his audience: “They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life.’ ” Among the other admonitions he felt children with autism should be hearing, he said, were: “ ‘Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.’ ”

Tuesday, February 27, 2018

Trump Again Talks About Mental Institutions

For many years, many people with autism and other developmental disorders languished in large institutions, some of which were snake pits.  JFK, whose sister was severely disabled, wanted to change things. 

In The Politics of Autism, I write:
Shortly after his inauguration, Kennedy created the President’s Panel on Mental Retardation. In a 1963 message to Congress, he called for a reduction “over a number of years and by hundreds of thousands, (in the number) of persons confined” to institutions for the mentally ill and mentally retarded. He said that these persons should be able to return to the community “and there to restore and revitalize their lives through better health programs and strengthened educational and rehabilitation services.” Though he did not use the term at the time, JFK was calling for deinstitutionalization. Over the next several decades, more and more people with disabilities such as autism would stay with their families or remain in their communities instead of entering institutions. 
Donald Trump, February 26, 2018:
You know, in the old days, we had mental institutions. We had a lot of them, and you could nab somebody like this. Because, you know, they did — they knew he was — something was off. You had to know that. People were calling all over the place.

But you used to be able to bring him into a mental institution, and hopefully he gets help or whatever — but he’s off the streets. You can’t arrest him, I guess, because he hasn’t done anything, but you know he’s like a boiler ready to explode, right? So he just — you have to do something. But you can’t put him in jail, I guess, because he hasn’t done anything.

But, in the old days, you would put him into a mental institution. And we had them in New York, and our government started closing them because of cost. And we’re going to have to start talking about mental institutions, because a lot of the folks in this room closed their mental institutions also.

Antivax Campaign in Texas

 In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.

Jessica Glenza reports at The Guardian about a Texas campaign that includes disgraced antivaccine activist Andrew Wakefield.
Anti-vaccine campaigners in the state’s biggest city are door-knocking, fundraising and Facebook-ing in hopes they can replace a moderate Republican with a conservative challenger, to represent a district that houses 2.1-miles of hospitals and research institutions.

Conservative Susanna Dokupil has received enthusiastic support from Texans for Vaccine Choice as she challenges fellow Republican Sarah Davis. Texans for Vaccine Choice declined to comment for this story. Dokupil did not respond to a request for comment.

Davis angered often women-led anti-vaccine groups, which prefer to be called “vaccine choice” or “medical freedom” campaigners, when she urged lawmakers to mandate human papillomavirus vaccines for foster children.

“There are clearly a number of candidates running with this platform front and center – vaccine choice, medical freedom,” Wakefield told the Guardian. “The members of Texans for Vaccine Choice have been very successful in their lobbying.”

“We’re seeing moderate candidates being cherry-picked out by candidates running on anti-vaccine platforms,” said Dr Peter Hotez, a tropical disease vaccine researcher at Baylor College of Medicine in Houston. Hotez, whose daughter has autism, warns that Texas could be vulnerable to a measles outbreak because so many parents have foregone shots. “They’ve clearly been very aggressive now, and have been emboldened.”

The trend appears to have spread across Texas. In recent months, high-profile politicians have questioned vaccine safety, such as the Bexar county district attorney, and state representatives and senators.

Monday, February 26, 2018

Reel People Employment

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many postshave discussed programs to provide them with training and experience

Valentina I. Valentini at Variety:
A few years ago, sound man Jimmy Lifton began a licensed training institute to help military veterans, including homeless vets, get jobs in below-the-line trades.
Last month his organization — the Lifton Institute for Media Arts and Sciences, or LIMS — expanded its scope with the addition of its Reel People program, designed to find jobs in film for a new group: high-functioning autistic adults.
Lifton, a producer and sound department veteran who has taken home two Daytime Emmys and five Golden Reels, has helped bring vets together with below-the-line workers he’s collaborated with through the years, many of whom are repeats to the program. When it came time to train the autistic adults — who, like the vets, are not charged for the training — he observed some of the same work ethic qualities: focus, determination, attention to detail and general stick-with-it-ness.
From Reel People:
REEL PEOPLE is a program under Plan of Action a non-profit organization specifically designed to train young adults with autism the technical trades in the film and television industry.

REEL PEOPLE is aimed to train individuals in the areas of lighting, camera operation and electrical distribution, visual effects, costume, art and set construction.
REEL PEOPLE founder, Jimmy Lifton, has been in the entertainment industry for over 40 years.
Through his experience, Mr. Lifton has identified autistic young adults with the ideal characteristics who can successfully contribute to the film and television industry.
“These people, in their own special way, have the drive for perfection, attention for detail and the work ethic to make it in this industry,” said Lifton.
Contributions to REEL PEOPLE will enable the funding for the training and job placements.
“There is no doubt in my mind that autistic adults are the ideal candidates to become highly sought-after crew members.” Lifton said emphatically.
Reel People is not your run of the mill job program for people with autism. Reel People opens a new door for these young adults to a real career field once thought beyond their reach.
“These are people who already have the passion for film and television,” said Lifton
“This gives them an opportunity that many did not think could be available to them.”
Lifton has over 40 projects under his belt since getting into the film and television industry dating back to the early 1980’s. Lifton has won 5 Golden Reels and 2 Emmys for his contributions to projects such as Kung Fu Panda and The Penguins of Madagascar.

Sunday, February 25, 2018

"Essential Oils"

In The Politics of Autism, I discuss autism quackery.  At Mother Jones, Kiera Butler writes about multi-level marketing [MLM- think Tupperware] of dubious products to the autism community.
Over the past five years or so, with a big assist from DoTerra and its main competitor, an MLM company called Young Living, essential oils have taken off in the autism community. Some parents I talked to told me they spend more than $200 a month on DoTerra products. On Facebook, there are dozens of essential oil groups for parents of kids on the spectrum—the group Autism, ADHD, and Essential Oils, for example, has more than 19,000 members.

In 2014, the Food and Drug Administration put DoTerra on notice that its salespeople were violating federal law by claiming the company’s essential oils could cure or treat a wide variety of health problems—“viral infections (including ebola), bacterial infections, cancer, brain injury, autism, endometriosis, Grave’s Disease, Alzheimer’s Disease, tumor reduction, ADD/ADHD, and other conditions that are not amenable to self-diagnosis and treatment by individuals who are not medical practitioners.”
After receiving the FDA’s letter, DoTerra warned its army of more than 3 million wellness advocates to refrain from making such claims, but not all of them listened—as of last week, at least one representative was touting the company’s essential oils on Facebook for flu prevention. When asked about salespeople still making health claims, DoTerra’s Larsen responded in an email that the company is “committed to absolute compliance with the FDA and similar regulatory bodies around the world.”

In any case, DoTerra salespeople have found a clever workaround. Instead of explicitly touting the oils’ ability to treat autism, salespeople need only share their personal experiences, telling potential customers about, say, the time vetiver helped their child sit through math class, or how a special blend prompted little Billy to hug Grandma for the first time. This sort of anecdotal marketing worries Jeremy Veenstra-VanderWeele, an autism specialist and professor of psychiatry at Columbia University’s medical school. “People sharing their own stories—that does not really tell us much about whether a treatment works,” he says. In fact, there’s no “biological plausibility” for how an essential oil would improve autism symptoms.

Saturday, February 24, 2018

ASD College Students: The Accommodations That They Prefer

This 2-year study investigated the accommodations and support services preferred by college students with autism spectrum disorder using sequential mixed methods non-experimental survey and semi-structured follow-up interviews. Students with autism spectrum disorder reported using both academic and non-academic supports with frequency (e.g. extended time on exams, transition program), using academic supports in line with other disability populations, and using non-academic supports connecting them one-to-one with a faculty member or coach as preferred (e.g. academic coach, counselor, faculty mentor). Findings suggest a need for university disability service centers, counseling services, and faculty to work together to develop systematic support systems for college students with autism spectrum disorder.
From the article:
Extra time on tests. Student interview comments corroborate the finding that extra time on tests was the top rated accommodation overall (83%). One student reported that
the extra time allows for careful reading of test questions:
I would probably say extra time on tests. With a lot of things I know that I could complete a test in a certain amount of time, but I always like double checking with things, because I know with a lot of my tests with my professors they would try to trick you with the wording of the questions. That’s the main reason why I take slow with tests.

Friday, February 23, 2018

Autistic People Do Not Lack Empathy

In The Politics of Autism, I look at the daily struggles of autistic people, including stereotypes and myths.

Sometimes political writers use "autism" as shorthand for things that they dislike.  (Google the term "political autism" and you will see what I mean.)  Such a practice is intellectually lazy and deeply demaning to people with real autism.

James McWilliams at Pacific Standard:
It's not often that an historian speaking to a church group ignites a controversy. But Nancy MacLean, a Duke University history professor, did exactly that when, in a recorded speech about her new book, Democracy in Chains: The Deep History of the Radical Right's Stealth Plan for America, she suggested that libertarians—or at least a subset thereof—were on the autism spectrum.
Reason's Robby Soave called MacLean's comment "decidedly unempathetic" and rooted in "remarkably bad-faith assumptions," an assessment which seems about right.
Scorned as they may be, the libertarians rightfully alluded to the real issue at stake here: The comment may have mischaracterized libertarianism, but it totally distorted autism.
The outdated association of autism with a lack of empathy comes largely from a British professor of psychopathology, Simon Baron Cohen. He coined the term "mind blindness" to describe an autistic person's inability to see the world through the eyes of another individual. The most debilitating feature of mind blindness, according to Cohen, is difficulty in reading people's facial and body language, which non-autistic people do to achieve a basic—albeit shallow—empathy.
But there are different sorts of empathy. As more recent research shows, having difficulty with social interaction, which could be fostered by mind blindness, doesn't preclude deep, or what's often called "affective," empathy. In Psychology Today, the psychologist Steve Taylor, hypothesizes that while autistic people may indeed be challenged when it comes to shallow empathy, they are quite adept at practicing deep empathy, an emotional reaction whereby a person enters the "mind space" of another, senses their feelings, and feels their pain or pleasure. It is in this direction that the research is flowing.

MacLean, for her part, regrets her error. More so, according to an email she sent to me, she appreciates the chance to have been pointed in a more progressive direction, at least when it comes to autism research. About her remark, she writes, "It was a long night and rather than take the time to find the right way to express what I wanted to say, I reached for a reference that was inappropriate and just wrong." And, she promises, "Having sought deeper knowledge about autism I have already learned my error about empathy and solidarity. I will continue to learn more going forward."
All of us, libertarians included, might seek our deepest empathy and consider doing the same.

Thursday, February 22, 2018

Trump Suggests Bringing Back Mental Institutions

For many years, many people with autism and other developmental disorders languished in mental institutions, some of which were snake pits.  JFK, whose sister was severely disabled, wanted to change things. 

In The Politics of Autism, I write:
Shortly after his inauguration, Kennedy created the President’s Panel on Mental Retardation. In a 1963 message to Congress, he called for a reduction “over a number of years and by hundreds of thousands, (in the number) of persons confined” to institutions for the mentally ill and mentally retarded. He said that these persons should be able to return to the community “and there to restore and revitalize their lives through better health programs and strengthened educational and rehabilitation services.” Though he did not use the term at the time, JFK was calling for deinstitutionalization. Over the next several decades, more and more people with disabilities such as autism would stay with their families or remain in their communities instead of entering institutions. 
Institutions still exist of course, but they house fewer people than in the past. At the White House listening session on school shootings, Trump suggested that he would like to turn the clock back.  He also demonstrated a total misunderstanding of why many of them closed in the first place.
You know, years ago, we had mental hospitals, mental institutions -- we had a lot of them, and a lot of them have closed. They've closed -- some people thought it was a stigma. Some people thought, frankly, it was -- the legislators thought it was too expensive.
Today, if you catch somebody, they don't know what to do with them. He hasn't committed the crime, but he may very well, and there's no mental institution. There's no place to bring him.

We have that a lot. Even -- if they caught this person -- I'm being nice when I use the word "person" -- they probably wouldn't have known what to do. They're not going to put him in jail. And yet -- so there's no -- that middle ground of having that institution, where you had trained people that could handle it and do something about it and find out how sick he really is. Because he is a sick guy, and he should have been nabbed a number of times, frankly.

Wednesday, February 21, 2018


In The Politics of Autism, I write:
There is no evidence linking autism to planned violence, but in recent years, mass shootings by young men have led commentators in the mainstream media and on the Internet to suggest such a connection. After the 2007 Virginia Tech massacre, for instance, news reports said that the shooter was on the spectrum. The speculation made little sense to anyone who understood autism. Whereas autistic people have language delays and deficits, the killer had learned English as a second language — and learned it well enough to major in the subject in college. Later on, it turned out that he had an entirely different problem, a social anxiety disorder. Adam Lanza, who committed the Sandy Hook massacre in 2012, may have had an Asperger’s diagnosis, but his father emphasized that his behavior stemmed from the psychiatric illnesses that he also had. Nevertheless, the media speculated about Lanza’s place on the spectrum, which worried autism parents. One mother of an autistic child wrote: “This is the first time I'm truly afraid for him. Afraid of what may happen to my son with autism at the hands of a stranger; a stranger who has chosen to buy into the media-fueled misinformation that individuals diagnosed with an Autism Spectrum Disorder are dangerous and capable of horrendous acts of terror and violence.”
Autism Speaks extends its deepest condolences to the community of Parkland, Florida, after last week’s deadly shooting rampage. As investigators search for motives, media reports indicated that the gunman had been diagnosed with autism spectrum disorder. But an autism diagnosis does not explain this horrific act of violence. We know that speculation and misinformation about autism and other neurodevelopmental disabilities have hurtful and lasting consequences.
Many people with autism also have secondary health issues and, in some, that secondary condition can be a mental health condition. However, research shows that people on the autism spectrum do not have higher rates of criminal behavior than the general public. In fact, teens and adults with autism are more likely than average to be the victims of crime. Autism affects each person differently, and misconceptions can increase prejudice toward the vast majority who are peaceful and productive members of society. Together, we can increase understanding and acceptance of each person’s unique story – the challenges, interests, abilities and aspirations. This is a time to mourn with the Parkland community and to remember that words matter when discussing this heartbreaking loss of life and shattered sense of security.
From the Autism Society:
 The Autism Society of America extends our thoughts and prayers to the families of the 17 innocent adults and children who were killed and those injured in a mass shooting at Marjory Stoneman Douglas High School in Parkland, Florida. We can’t imagine the grief and sorrow of all impacted by these shootings. We thank the first responders and teachers who were there to help students through this horrific tragedy.
Some media outlets and social media messages are suggesting the individual arrested for these killings may have autism. In some news reports, the reporting of his diagnosis may imply a linkage of an autism diagnosis and committing violence. No reliable research has found that a person who is autistic is more likely to commit violence than a person without an autism diagnosis. In fact, existing research finds that autistic individuals are more likely to be victims of violence than those without an autism diagnosis. There is no confirmation of the diagnosis of the individual arrested.
We ask that those reporting about this tragic event not suggest or imply any linkage of autism and violence. Implying or suggesting that a person who is diagnosed with autism is violent is not only wrong but hurtful to the over 3.5 million individuals living in the United States and any other individual with an autism diagnosis.
We again strongly encourage Congress and state legislatures to bring together experts on violence and develop a comprehensive and effective national response to stop these senseless killings.

Tuesday, February 20, 2018

Trump Budget Cuts

 In The Politics of Autism, I discuss the political aspects of science and public health. Many posts havediscussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on scienceand disability issues more generally.

The Autism Society analyzes the Trump budget's impact on disability programs. It is mostly negative.

Monday, February 19, 2018

Bleach and Autism

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

WDBJ in Indianapolis:
An Indianapolis father accused his wife of feeding their child bleach to help cure her autism, according to a recent police report.
The report says the mother was putting drops of hydrochloric acid and water purifying solution (which contains chlorine) in her child’s drink. The man says his wife told him she read about the mixture online in a Facebook group. The mother reportedly identified the mixture as the "miracle mineral solution.”
According to IMPD, the Department of Child Services is currently investigating the case and has removed the child from the home.
The miracle mineral solution claims to be a cure-all for anything ranging from cancer to hepatitis and even aids. However, health officials, including the FDA, have warned the product is little more than bleach.
Officials at the Applied Behavioral Center for Autism say it’s common for parents to search for home remedies to cure autism.
“Taking things into their own hands is something that many parents have done out of desperation, out of hope,” president and founder Sherry Quinn said.
Abby Haglage at Yahoo:
Myths abound in the autism world — and, thanks to the internet, those myths travel.
Whether it’s a company touting concentrated oxygen chambers as a cure or a doctor erroneously claiming the condition is caused by vaccines, the many misconceptions about autism cater to parents who are desperate for answers. At best, they muddy the truth about the developmental disorder that affects one in 68 kids nationwide. At worst, they put those kids in danger.
That’s what happened most recently in Indiana, when a mom allegedly gave her daughter drops of a “bleach-like” concoction that she read online was a “cure” for autism. According to local Fox news, the unnamed mother told her husband she got the idea from “a Facebook group” that referred to the liquid as the “miracle mineral solution” or MMS.
This “miracle mineral solution” is a myth that has existed for some time; it pops up regularly in online antivaccination discussions. For instance, MMS interpreted as “master mineral solution” is favored by a woman named Kerri Rivera, a controversial Chicago native who now runs a nonprofit clinic in Latin America that purports to “cure” autism. In 2012 at a yearly conference called Autism One, Rivera announced MMS as the “missing piece to the autism puzzle,” one that she claims allowed “38 children to recover in 20 months.” Her website now claims that MMS has cured 235 children, as of October 2016.

Sunday, February 18, 2018


In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. The challenges are especially great for military families.

Many posts have discussed Tricare  a health care program of the Department of Defense Military Health System.  It Tricare provides civilian health benefits for military personnel, military retirees, and their dependents. Military autism families depend on it.

Dianna Cahn at Stars and Stripes:
Across the country, parents and providers say they are facing overwhelming obstacles to sustaining services under Tricare following the Jan. 1 reorganization that included merging Tricare East and Tricare South and changing out contracts for Tricare East and West.

Servicemembers and family members have reported difficulties connecting to online systems and hourslong waits to speak to customer service. Parents and providers said they learned more from each other in online forums than from attempts to reach their insurance representatives.

Meanwhile, providers say reimbursements are patchy; they are slow to be approved; many providers are being reimbursed at rates of less qualified professionals; and the management companies – Humana Military in Tricare East and HealthNet in Tricare West – are slow to correct errors or address problems.

The Defense Health Agency says it is aware of the problems, particularly in Tricare East, and it has established a joint DHA/Humana Autism Task Force to resolve issues. It also says many of the problems have been corrected or are being resolved. But providers say that while claims that do go through without error are being processed more quickly, many of the issues still persist – including frequent errors in processing, payment rates and full reimbursements.

Saturday, February 17, 2018

Judge Rules That Endrew F's Family Should Get Reimbursement

In The Politics of Autism, I write about IEPs and FAPE.

John Aguilar at The Denver Post:
A federal judge on Monday ruled that the Douglas County School District did not provide an adequate education to a student who has autism and must reimburse his family for the cost of sending him to a private school for students with disabilities.
The ruling from U.S. District Judge Lewis Babcock represents the latest, and possibly final, chapter in a long-running legal battle between the family of a student known in court records as Endrew F. and the 68,000-student school district that went all the way to the U.S. Supreme Court.
In a unanimous ruling last year, the high court stated that federal law requires public schools to offer special education programs that meet a higher standard than simply the bare minimum. Chief Justice John Roberts wrote in the March 2017 opinion that federal law requires an educational program be “reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances.”
The high court didn’t say whether Douglas County had reached that bar with the individualized educational program it offered Endrew and remanded the case back to the district court to make that determination.
Babcock reasoned that once the Supreme Court elevated the previous standard of a “de minimis” — or minimum — approach to special needs education to a higher standard of “markedly more demanding,” Douglas County’s efforts to provide Endrew with a special needs curriculum had been insufficient. He said the district is on the hook for the student’s private tuition.

Thursday, February 15, 2018

House Votes Today on Bill to Weaken ADA

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

David M. Perry at Pacific Standard:
On Thursday, February 15th, the Republican caucus and at least some Democrats in the House of Representatives are likely to vote to make the Americans With Disabilities Act (ADA) functionally optional when it comes to businesses. Propelled by years of lobbying by a group that represents shopping malls, the House will approve a new law that removes businesses' incentive to comply with the ADA. Disability activists unanimously argue that the bill will reverse nearly 30 years of progress, but the lobbying efforts of the International Council of Shopping Centers keep pushing it forward.
H.R. 620, the "ADA Education and Reform Act of 2017," restructures the enforcement mechanism for the ADA. The means of enforcement have always been unusual. Most regulations that affect commerce are enforced by local, state, and federal agencies. While there is a small division in the Department of Justice (DOJ) doing some oversight, the ADA generally depends on private citizens bringing complaints through damages-free lawsuits (though with legal fees attached) in order to command technical compliance in commercial spaces. Think about how this differs from most other regulatory situations. You aren't required to check whether the local restaurant complies with health codes, labor standards, or other safety features; the government does that for you. When it comes to disability, though, most enforcement starts with a personal lawsuit.
H.R. 620 works on two fronts. First, it demands that the federal government offer businesses more education about the ADA, while not providing additional funding to implement that education. In fact, the DOJ already provides such education. As we've covered at Pacific Standard, the Department of Justice has been rolling back guidance documents that clarify how the ADA works, so the best guess about H.R. 620's education statute is that it's a way to cut enforcement activity by making the DOJ spend more money on education.
The second front—notification—is more pernicious. Right now, businesses that are found to be non-compliant can be held immediately accountable. That seems fair, given that the ADA has been law for 28 years. Under the new bill, a person who encounters an accessibility obstacle would need to give a written, technical notification to the business (which often will require a lawyer to do correctly), wait 60 days for that notification to be acknowledged, and then wait 120 more days for "substantial progress" to be made in resolving the accessibility issue. If, after 180 days, there hasn't been substantial progress (it's not clear quite how that standard would be regulated), the disabled person who first encountered the accessibility obstacle can then sue. They still won't be able to collect damages.

Wednesday, February 14, 2018

ASAN Opposes Bill to Weaken ADA

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

ASAN Letter to House Leaders on H.R. 620
The Autistic Self Advocacy Network (ASAN), the nation’s leading 501(c)(3) disability rights advocacy organization by and for autistic people ourselves, strongly opposes H.R. 620, the “ADA Education and Reform Act of 2017.” H.R. 620 would curtail the civil rights of Americans with disabilities by making it prohibitively difficult for us to enforce our right to access public places under Title III of the Americans with Disabilities Act (ADA). By unnecessarily forcing people with disabilities to navigate complex red tape and wait for months before challenging access barriers, HR 620 would greatly reduce our access to the community and limit our ability to live full and independent lives. By forcing people with disabilities to hire lawyers to provide the required notices, H.R. 620 may also increase the total amount of ADA litigation.
H.R. 620 would require people with disabilities to file a complicated written notice to the owner of a public accommodation before they can file a legal complaint challenging an architectural barrier. The notice must describe the barrier, explain the exact way that the barrier has already prevented the person from gaining access, note whether the barrier was permanent or temporary, whether the person has already requested the removal of the barrier, and must even cite the specific provisions of the ADA that were violated. No other civil rights law requires such a notice. Requiring people who want to sue under a civil rights law to navigate additional procedural hurdles sets a dangerous precedent, which could lead to similar bills that curtail the enforcement of other civil rights laws, such as the Civil Rights Act of 1964. The notice requirement is also unduly burdensome and will chill legitimate claims, particularly for people with cognitive and developmental disabilities, who may have difficulty providing these details. Moreover, because it requires a citation to specific portions of the ADA, the law effectively forces people with disabilities to preemptively hire a lawyer in order to notify businesses of an ADA violation.
Following the receipt of a notice, the business owner would then have 60 full days to acknowledge receipt of the letter, and another 120 days to make “substantial progress” in eliminating the barrier. People with disabilities might be forced to wait up to four months to enforce our own civil rights, even if we need access to a particular business right away. This will make the ADA effectively unavailable to people with disabilities who wish to attend concerts, sports games, or other similar events on a specific date, to travelers with disabilities, and to people with disabilities who need to access a specific building as part of their job.
Additionally, H.R. 620’s letter requirements place the burden of educating businesses on ADA compliance on the person with a disability. The Americans with Disabilities Act has been law since July 26, 1990. Businesses have had 28 years to come into compliance with the ADA, and 28 years of ready access to the resources necessary to understand how to come into compliance. The Department of Justice and Regional ADA Centers already provide technical assistance, training, and resources on how to comply to businesses across the nation. Many disability rights organizations themselves offer webinars, training, and resources on how to create accessible businesses and public spaces. There is no justifiable reason, therefore, that a business should be out of compliance with the ADA, nor should people with disabilities have to wait even one day longer to take action against a business that is violating the law. We cannot, and should not, be expected to teach a business how to respect our rights.
H.R. 620 is being promoted by a small number of businesses who feel that they have been subjected to frivolous lawsuits. While frivolous lawsuits and unethical lawyers do exist in all legal fields, including disability rights, imposing onerous procedural requirements and a lengthy waiting period is unreasonable and ineffective as a deterrent. The ADA itself was constructed with an emphasis on reducing frivolous litigation. Only injunctive relief and attorney’s fees, rather than damages, are available for violations of Title III of the ADA. State and local laws, professional ethics rules, and the federal rules of civil procedure (such as Rule 11), additionally deter lawyers from submitting fraudulent or frivolous lawsuits.
Instead, since average citizens are less likely to be familiar with the procedural requirements, H.R. 620 is more likely to chill legitimate claims filed by people with disabilities ourselves. People with disabilities with legitimate claims often attempt to notify businesses and give them an opportunity to cure the violation prior to seeking out a lawyer. However, since few lay persons will be aware of the requirements of H.R. 620, those who made a good faith but unsuccessful effort to talk to the business owner will find that they must now provide another legal notice and wait another four months before they can file a complaint in court. This system encourages a person with a disability to hire a lawyer as soon as they experience an access denial, which may in fact increase the likelihood of litigation.
People with disabilities have been discriminated against and treated as second-class citizens for generations. H.R. 620 would undermine enforcement of critical legal protections. For this reason we urge Congress to oppose the passage of this legislation. For more information on the Autistic Self Advocacy Network and our opposition to H.R. 620, please contact Samantha Crane, our Director of Legal and Public Policy, at
Samantha CraneDirector of Legal and Public PolicyAutistic Self Advocacy Network

Tuesday, February 13, 2018

Food Boxes

In The Politics of Autism, I write:
Autism often involves a range of other co-occurring conditions: intellectual disabilities (e.g., low IQ); delays in gross motor skills (e.g., walking, throwing) and fine motor skills (e.g., writing); attention problems and hyperactivity; anxiety; self-injurious behavior; unusual sensitivity to certain sounds, smells, or feelings; extreme food selectivity; and sleep disorders. For autistic people and their families, the co-occurring conditions may cause as much anguish as the autism itself.
Helena Bottemiller Evich reports at Politico:
The Trump administration is proposing to save billions in the coming years by giving low-income families a box of government-picked, nonperishable foods every month instead of food stamps.
White House OMB Director Mick Mulvaney on Monday hailed the idea as one that kept up with the modern era, calling it a "Blue Apron-type program" — a nod to the high-end meal kit delivery company that had one of the worst stock debuts in 2017 and has struggled to hold onto customers. Mulvaney said the administration’s planwould not only save the government money, but also provide people with more nutritious food than they have now.
The idea that USDA would provide millions of low-income people packages of food on a national scale has not been floated by conservative think tanks, promoted by industry, or sought by previous administrations. Murtaugh said the concept was developed internally at USDA. Mulvaney on Monday credited Perdue for it during a briefing at the White House.
"Secretary Perdue wanted to give it a chance," he said. "We thought it was a tremendous idea."
Numerous questions remain, such as how these boxes would be customized for, say, a family that has a child with nut allergies — or for those who don't eat certain types of meat out of religious or personal reasons. The proposal was so out of left field that some anti-hunger advocates initially thought it was a joke.
Autism presents another problem for such a scheme.  Some low-income families have autistic children.  Most autistic children have problems with food selectivity.  They not just "picky eaters" like many typically developing children. They cannot tolerate certain kinds of foods and often subsist on an extremely narrow diet. Marci Wheeler writes at Indiana University:
Many parents of children on the autism spectrum struggle with their child’s severe eating problems with little or no professional help. In part, this is simply due to the limited number of specialists dealing with eating and feeding disorders. Furthermore, within this limited number of specialists there are few that have much understanding and experience with children who have autism spectrum disorders. A frequently suggested strategy for many children with eating and feeding disorders involves withholding food until the child is hungry enough to eat. This approach has been shown to be dangerous and not appropriate for a child on the autism spectrum. Unfortunately, professionals as well as concerned family members and friends mistakenly blame parents of children with autism spectrum disorders for their child’s poor eating habits. Sometimes parents’ concerns are ignored and they are told not to worry since most children go through stages of picky eating and food fads.
 The Trump scheme would mean that many of these kids would go hungry.

Monday, February 12, 2018

Up This Week: A Bill to Weaken ADA

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

From the Autism Society
Next week the House of Representatives may consider a bill, the ADA Education and Reform Act (H.R. 620), that would severely weaken the Americans with Disabilities Act (ADA). H.R. 620 is a thinly veiled attempt to absolve businesses and organizations from complying with the ADA provision requiring access to public accommodations by shifting the burden to inform and educate to those whose rights are violated.
Please call your Representative today and the rest of this week and urge them to protect the rights of people with disabilities by voting NO on H.R. 620. Call the U.S. Capitol switchboard 202-224-3121 and ask for your Member of Congress.
Talking Points

HR 620 would do the following:
Eliminate the need for businesses and other entities that offer services to the public to meet accessibility requirements until a complaint is filed against them
Limit the ability to file a complaint unless it is in writing, specifies the exact part of the law that is being violated, whether the person complaining has made a direct complaint to the business, and whether the barrier or lack of access is permanent or temporary
The person with a disability must then wait up to 180 days for the business to “fix” the complaint; therefore denying the person with a disability access to the services for the waiting period
Also, a business could have more than 180 days to fix the complaint if they are making “substantial progress” to fix the complaint
This bill attacks the rights of people with disabilities because of “frivolous” law suits being brought by lawyers against businesses. This “problem” is about lawyers who are bad actors and should not be “solved” by gutting the rights of people with disabilities.
For more information and talking points, see the Consortium for Citizens with Disabilities’ ADA website.
California delegation
Illinois delegation
Florida delegation
Colorado delegation
Texas delegation
New Mexico delegation
Arizona delegation
Nevada delegation
Oregon delegation
Collin Peterson (D-MN)
Kurt Schrader (D-OR)
Zoe Lofgren (D-CA)
Mark DeSaulnier (D-CA)
Daniel Lipinski ( D-IL)
Ted Deutch (D-FL)
Jim Cooper (D-TN)
Jacky Rosen (D-NV)
Stephanie Murphy (D-FL)
Jared Polis (D-CO)
Dwight Evans (D-PA)
Mike Doyle (D-PA)
Kathleen Rice (D-NY)
Terri Sewell (D-AL)
Bill Foster (D-IL)
Jim Costa (D-CA)
Jackie Speier (D-CA)
Ami Bera (D-CA)
Luis Correa (D-CA)
Pete Aguilar (D-CA)
Scott Peters (D-CA)
Henry Cuellar (D-TX)
Kyrsten Sinema (D-AZ)

Sunday, February 11, 2018

Autism Acceptance in the Workplace

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.

Last April, 50 big-name companies -- including JP Morgan, Ford and Ernst &Young -- came together for a summit on how to bring more autistic adults into the workforce.
It was hosted at the Silicon Valley campus of German software maker SAP, which was one of the first large companies to reach out to the autistic community.
It started its Autism at Work Program almost five years ago, and since then it's hired 128 people on the spectrum, with the goal of hiring more than 600.
"I have been in this industry for close to 30 years, and I can tell you it's probably the single most rewarding program that I have been involved with," said Jose Velasco, who heads the program.
The biggest surprise for him, he says, has been the variety of candidates applying. "Very quickly we started getting resumes from people that had degrees in history, and literature in graphic design, attorneys … the whole gamut of jobs," Velasco said.
"So really, you went into this thinking that people with autism would be good at certain jobs, and what you ended up discovering is they're good at all jobs?" asked Cowan.
"They are good at just about every role."

Saturday, February 10, 2018

Milwaukee Official Screws Up on Vaccines and Autism

 In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.

Rebecca Klopf reports at WTMJ-TV in Milwaukee:
After she was criticized for stating the "science is still out" on the link between vaccines and autism on a radio show, Milwaukee interim health commissioner Patricia McManus, walked back her comments in a statement to the Milwaukee Common Council.

“My daughter received all of her immunizations as a child, and all of my grandchildren continue to do so as well. I do not question the science," McManus said in a prepared statement Friday. "I, as most public health professionals and doctors, believe that the best thing to do is to get immunized.”

McManus made the comments on the radio show The Forum on Thursday, saying, “I mean, there’s still people who believe it. And so I don’t know. I think the science is still out. I think that’s a decision that these families are going to have to make on their own at this point.”

"The information that is out there, especially from CDC they basically say there's been no way of knowing that there has been a linkage between autism and MMR," McManus also said.

A statement from CDC said the opposite: "All reputable scientific studies have found no relationship between MMR vaccine and autism."