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Saturday, May 25, 2019

Federal Laws Affecting Students with Disabilities

In The Politics of Autism, I write about special education and laws that affect students with disabilities, such as the Individuals with Disabilities Education Act.

From the report:
The Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act (Section 504), and the Americans with Disabilities Act (ADA) each play a significant part in federal efforts to support the education of individuals with disabilities. These statutory frameworks, while overlapping, differ in scope and in their application to students with disabilities. As a result, when students with disabilities transition between levels of schooling, the accommodations and services they must be provided under federal law may change. For example, while the IDEA, the ADA, and Section 504 potentially apply to children with disabilities from preschool through 12th grade (P-12), only the ADA and Section 504 apply to students in an institution of higher education. More generally, application of the IDEA, Section 504, and the ADA to students with disabilities is determined by (1) the definition of “disability” employed by each framework; (2) the mechanisms employed under each law to determine whether a student has a qualifying disability; and (3) the adaptations, accommodations, and services that must be provided to students with disabilities under each law.

The IDEA incorporates a categorical definition of “disability,” identifying a covered “child with a disability” as any “child” having at least one of 13 conditions specifically categorized in the act. Thus, to qualify for services under the IDEA a student of qualifying age must satisfy two requirements. First, the student must have a documented disability that falls in one of the categories enumerated in the IDEA,  as further specified by ED’s implementing regulation. And second, as a result of that disability the student must require “special education and related services” in order to benefit from public education. Only if the student meets both criteria will he or she be eligible to receive the principal benefit of the act: specially designed instruction or special education in which the content or the delivery of the instruction is adapted to the child’s individual needs, detailed in a plan known as an individualized education program (IEP).
Sections 504 and the ADA draw on a common definition of “disability,” one that is substantially broader than the categorical definition found in the IDEA. Under both laws, an “individual with a disability” includes “any person who (i) has a physical or mental impairment which substantially limits one or more major life activities, (ii) has a record of such an impairment, or (iii) is regarded as having such an impairment.” This definition, unlike the IDEA’s, is not restricted to the educational context. And also unlike the definition used in IDEA, the definition found in Section 504 and the ADA is broadly functional, protecting individuals with any “impairment” affecting a bodily or intellectual function—like seeing, hearing, walking, or thinking.

Footnote 33: Compare 20 U.S.C. § 1401(3)(A)(i) (defining a “child with a disability” as one who has “intellectual disabilities, hearing impairments (including deafness), speech or language impairments, visual impairments (including blindness), serious emotional disturbance . . . , orthopedic impairments, autism, traumatic brain injury, other health impairments, or specific learning disabilities”) with 34 C.F.R. §§ 300.8(c)(1)-(13) (enumerating these as 13 distinct categories of disabilities covered by the IDEA).

Friday, May 24, 2019

Institutionalization During and After Disasters

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  Those challenges get far more intense during disasters.

The National Council on Disability has a new report: Preserving Our Freedom: Ending Institutionalization of People with Disabilities During and After Disasters.
SCOPE: This report examines occurrences of institutionalization of people with disabilities, as well as threats of institutionalization that were thwarted, in 2017 and 2018, including during Hurricanes Harvey, Irma, Maria, Florence, and Michael, and the California wildfires. This report:
  • Examines how, when, and why people with disabilities were institutionalized during and after recent disasters.
  • Examines the systemic issues that continue to cause institutionalization of persons with disabilities.
  • Discusses the grave short- and-long-term physical, mental, and financial consequences that institutionalization wreaks.
  • Provides recommendations and promising practices that would enable federal agencies to eliminate institutionalization of persons with disabilities during future disasters.
SUMMARY: NCD examined available data from several major storms and disasters and found that people with disabilities are frequently institutionalized during and after disasters due to conflicting federal guidance; a lack of equal access to emergency and disaster-related programs and services; and a lack of compliance with federal law.
The report, which focuses on the reasons people with disabilities experience involuntary institutionalization as a result of disasters, found that the Federal Government offers conflicting guidance on the topic.
The report also found that recipients of federal funds do not have training for how to comply with federal requirements to provide equal access to emergency and disaster-related programs and services when using federal dollars, nor do they have the cultural competence to interact with people with disabilties and often adhere to stereotypes and myths about disability that results in institutional placement. As a result of unnecessary institutionalizations during and after disasters, people with disabilities often go unaccounted for, families are separated from loved ones, working individuals with disabilities often become unemployed, and students with disabilities are often excluded from returning to school with their peers. The report concludes with recommendations for federal policymakers.

From the report:
Anecdotal evidence shows that people with mobility disabilities, autism, intellectual disabilities, actual or perceived psychiatric disabilities, dementia, brain injury, and COPD and respiratory disabilities have been unnecessarily institutionalized during disasters in a variety of facilities.
 One senior executive at a major oil company in Texas who is the parent of a child with autism attributed her inability to resume work after Hurricane Harvey to the lack of child care and transportation from their temporary housing location to her child’s school, which was now several hours away. The relocation of the family’s in-home support providers resulted in the loss of that essential service. The school district offered
residential care so the mother could resume employment, an illustration of multilayered
economic ramifications.


Thursday, May 23, 2019

Bleach Quackery Persists on Social Media

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

E.J. Dickson at Rolling Stone:
Although the FDA has issued numerous warnings about the effects of MMS (and although Humble himself has publicly admitted that the substance “cures nothing”), there are still numerous videos on YouTube of Humble promoting the substance as a cure for, among other things, autism, according to a Business Insider investigation; the report also found that the videos were easily accessible on the platform, coming up as a top result in searches for terms like “autism” and, in some cases, racking up millions of views.
There are also a number of private Facebook groups advocating for using MMS or other forms of sodium chlorite as a cure for autism. Such groups, which overlap a great deal with anti-vaccine content, contain shocking testimonials from mothers who administer these treatments to their autistic children, reporting horrifying adverse reactions; in one particularly appalling case, a mother of a six-year-old autistic boy was reportedly investigated by police after giving him a bleach enema, which led to him having his bowel removed and needing a colostomy bag.

Wednesday, May 22, 2019

Education Department Changes Course on Equity in IDEA

Pursuant to the plain language of the December 19, 2016 Equity in IDEA regulation on significant disproportionality, and in conjunction with the March 7, 2019 decision in COPAA v. Devos, the Department expects States to calculate significant disproportionality for the 2018–2019 school year using the 2016 rule’s standard methodology, or to recalculate using the 2016 rule’s standard methodology if a different methodology has already been used for this school year.
Christina Samuels at Education Week:
The implementation whipsaw is expected to cause problems for states that had relied on the delay of the policy, which relates to disproportional representation of minorities in special education. And these new rules could affect how millions of dollars in federal special education funds are spent at the district level.

The National Association of State Directors of Special Education said that it was "deeply disappointed" in the Education Department's "abrupt" actions, which were announced in a short notice dated May 20 on the department's website. The announcement offers no timetable or additional resources for states.

"A new requirement of this magnitude deserves communication directly from the Department of Education with those responsible for implementation. Moreover, conflicting and untimely direction from the Department is not helpful, nor does it create an effective or efficient means to serve the nation's students with disabilities," said John Eisenberg, the executive director of the special education administrators group, in a statement.

Tuesday, May 21, 2019

Undercover Moms v. Autism Quacks

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

Brandy Zadrozny at NBC:
When they aren’t working or taking care of their autistic children, Melissa Eaton and Amanda Seigler are moles.
Eaton, 39, a single mother from Salisbury, North Carolina, and Seigler, 38, a mom to six in Lake Worth, Florida, have spent much of their free time in the last three years infiltrating more than a dozen private Facebook groups for parents of autistic kids. In some of these groups, members describe using dubious, dangerous methods to try to “heal” their children’s autism — a condition with no medically known cause or cure.

The parents in many of these groups, which have ranged from tens to tens of thousands of members, believe that autism is caused by a hodgepodge of phenomena, including viruses, bacteria, fungal infections, parasites, heavy metal poisoning from vaccines, general inflammation, allergies, gluten and even the moon.
The so-called treatments are equally confused. Some parents credit turpentine or their children’s own urine as the secret miracle drug for reversing autism. One of the most sought-after chemicals is chlorine dioxide — a compound that the Food and Drug Administration warns amounts to industrial bleach, and doctors say can cause permanent harm. Parents still give it to their children orally, through enemas, and in baths. Proponents of chlorine dioxide profit off these parents’ fears and hopes by selling books about the supposed “cure,” marketing the chemicals and posting how-to videos.
 Horrified by the treatment of these children, Eaton and Seigler research the parents online to determine their identity and location, then send screenshots of the Facebook posts to the local Child Protective Services division, though they rarely hear back on whether action was taken. The pair say they’ve reported over 100 parents since 2016. They also report the posts to Facebook and have submitted their findings to the Food and Drug Administration, the Department of Justice and child abuse organizations.

Monday, May 20, 2019


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 May 17, 2019, 880 individual cases of measles have been confirmed in 24 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 1994 and since measles was declared eliminated in 2000."

Lena Sun and Ben Guarino at The Washington Post:
In a suburban shopping center an hour north of New York City, hundreds of mostly ultra-Orthodox Jews gathered in a sex-partitioned ballroom to hear leaders of the national anti-vaccine movement.
Sustained applause greeted Del Bigtree, a former television producer-turned-activist who often wears a yellow star of David, similar to those required of Jews in Nazi Germany, to show solidarity with parents ordered to keep unvaccinated children at home.
Bigtree described the purported dangers of childhood vaccines in phrases that also conjured the Nazis.
“They have turned our children into the largest human experiment in history — all of history,” he said.
The turnout last week in this suburb hard hit by measles helps explain why New York has become Ground Zero in one of this country’s largest and longest-lasting measles outbreak in nearly 30 years. Even in a religious community grappling with more than 700 cases in Rockland County and New York City since last fall — among them, children on oxygen in intensive care units — anxious and confused parents said they came because they are afraid of vaccines and seeking guidance about what to do.
Ethan, a 36-year-old father of six from Queens who declined to give his last name, said he attended the event out of “a genuine concern” for his family, driven by his wife’s research into vaccines. She had read “a lot of literature” and watched Bigtree’s film, which accuses the government of covering up a purported link between the measles vaccine and autism — a tie repeatedly disproved by studies around the world involving hundreds of thousands of children.

Sunday, May 19, 2019

Little Progress on Curbing Vax Exemptions

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.

Michael Ollove at Stateline:
Despite the worst measles outbreak in decades, few state legislatures this year have reconsidered the exemptions that families use to avoid inoculating their children.
As many legislative sessions wind down, only Washington state, which has had one of the highest numbers of measles cases, has sent a measure to the governor’s desk.
Every state allows schoolchildren to skip inoculations for medical reasons, such as a compromised immune system or an allergy to a vaccine’s components. And all but three states — California, Mississippi and West Virginia — also give passes to families who claim personal or religious objections to vaccinations.
In many states, that number has been growing. For example, the Houston Chronicle reported this week that nonmedical exemptions granted in Texas rose 14% in 2018-2019, continuing a 15-year upward trajectory.
To be sure, the current outbreak began after most state legislative sessions were underway. But proposals to scale back exemptions that did emerge faced vehement opposition from “anti-vaxxer” groups, which scuttled them in several states.
Dr. Sean O’Leary, a Colorado pediatrician who serves on the infectious diseases committee of the American Academy of Pediatrics, blamed such groups for the failure of a bill in his state.
“The anti-vax groups are loud and pretty organized and have worked for years,” he said.
They were organized in Oregon, at Aubrey Wieber reports at The Salem Reporter  that legislation to end non-medical exemptions died in the state senate.
[P]olitical spending reports filed with the state Elections Division show that the political action committee of one of the groups most active against HB 3063, Oregonians for Medical Freedom, has received nearly $160,000 in political donations since. A good chunk of that money — $87,443 — came from Portland venture capitalist Jonathan Handley and his wife Lisa. They haven't contributed since 2017.

The Handleys' son was diagnosed with autism and Jonathan Handley wrote a book about a connection between autism and vaccines. Over the years there have been many reports and theories on a connection between vaccines and autism, but the scientific community has repeatedly debunked them.


Oregonians for Medical Freedom is based in Hillsboro and was registered as a nonprofit last February by the law private firm of Andrew Downs, who also serves as legal counsel for the Senate Republican office.
The term "medical freedom" is inherently political. It originated in libertarian circles and is a term used by famed libertarian Ron Paul. Similarly minded groups in several states use the term medical freedom or something similar.
Sen. Sarah Gelser, D-Corvallis, said she is worried the success of the opponents could become a playbook for other issues. The opposition pulled people from all walks of life. Some, Gelser said, were pleasant and respectful... Others, she said, made physically and sexually violent threats, wearing the yellow stars of David and making analogies to gas chambers, communism and Jim Crow laws. "I got this heinous email about being raped and being raped harder," Gelser said. "In the past 24 hours, I have been called a turd sandwich, a whore, the C-word, I have been invited to lick, suck and bite various body parts, some of which I've never heard of."
 One of those who became a regular at the Capitol was Raisa Piatkoff of the Russian Old Believer community in Woodburn. Her community is against the bill for religious reasons.

Saturday, May 18, 2019

Prevalence and Outcomes in Adults

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence

At Autism Research, John Elder Robison has an article titled "Autism Prevalence and Outcomes in Older Adults."

The lay summary:
Public policy toward autistic people is driven by data. Most autism data to date have been derived from and about children, because autism tends to be identified and supported in the public school system. This has created a public perception of autism as a childhood problem. In fact, autism is a lifelong difference or disability, and recent studies suggest serious overlooked concerns for autistic adults. This commentary discusses how we have evaluated adult autism so far, limitations of our knowledge, and how we might evaluate adult needs going forward. The commentary makes a case for specific new adult prevalence and outcome studies to inform public policy.
From the article:
When discussing autism in public policy our first question might be how many adults are actually at risk? The fact is, we do not know the size of our adult autistic population, and we do not know if the outcome data we have is broadly applicable, or only applies to the subset profiled by the studies. The arguments that it does not apply are just as strong as those that it does.
Amazingly, there is only one large‐scale study measuring adult prevalence. In 2011, Terry Brugha of the University of Leicester evaluated autism prevalence in a British community [Brugha et al., 2011]. That project was based on a survey of 7461 adults and looked at rates of autism and social attainment. Perhaps the most significant finding was that the rate of autism was not age‐dependent, but the rate of existing diagnosis was. Brugha et al. [2011] found a fairly constant prevalence independent of year of birth. The older the study participant, the less likely they were to have been previously diagnosed with autism.
The finding that most older adults were not originally diagnosed with autism is consistent with anecdotal accounts of older autistic people ...If those and the Brugha et al. [2011] data are a guide, there are many older autistic adults who are unaware they would be on the autism spectrum if evaluated today. Brugha et al. [2011] found very high rates of autism among older adults previously diagnosed with learning disabilities, and they found a large number of autistic people living in group or institutional settings. Neither of those findings are surprising.
According to Brugha et al. [2011], with our current best estimates of prevalence, roughly one in 50 men, or one in 75 people of all ages are on the autism spectrum.
Adult outcomes range from institutionalization to invisibly blending into the community, yielding a colossal range of implications for supports and services. If we are to have an informed autism policy, we need accurate data characterizing autistic adults. What studies like Croen et al. [2015] show is that the diagnosed (and therefore identifiable) older adult autistic population has an alarming set of problems, but Brugha and other findings suggest they are only a small percentage of the actual adult population. We do not know anything of the health of the rest. To accurately survey the medical issues of all autistic adults, we must identify a broad enough swath to describe the population. That probably means conducting a larger scale study like Brugha et al. [2011] in the U.S.

Friday, May 17, 2019

Antivax Acquiescence = Complicity

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.

Let’s not reserve our outrage for the likes of Jonathan Stickland, the buffoonish far-right Texas House member from Bedford who attacked a prominent infectious disease expert on Twitter recently and equated Dr. Peter Hotez’s life-saving vaccine research to “sorcery.”
Let’s save some ire for folks who know better and say nothing.
Gov. Greg Abbott and legislative leaders in Austin surely know that Texas has seen a 2,000 percent increase in vaccine exemptions since 2003, the year we began allowing parents to decline required immunizations for non-medical reasons. Texas saw a 14 percent increase last year alone.
We hope Abbott and the others saw the story Friday by the Chronicle’s Todd Ackerman on a study showing Harris County is one of the nation’s most vulnerable counties to an outbreak of the highly contagious, potentially fatal virus that was largely eradicated two decades ago.
Why? International travel mixed with the dangerous prevalence of parents opting out of once-mandatory shots for their children, according to the journal Lancet Infectious Diseases.

Yet, Abbott and others say little to counter the myths invented in debunked scientific research, half-truths and conspiracy theories of the growing anti-vaccine movement.
In 2015, spokeswoman Amelia Chasse said in a Chronicle story that the governor recognized the public health benefits of vaccines and encouraged all parents to have their children vaccinated, as he and the first lady did with their daughter.
But Abbott “supports current Texas law that he believes strikes the right balance of requiring vaccinations while still allowing parents to opt out under certain circumstances,” Chasse added.

Thursday, May 16, 2019

Due Process: Grim Odds in Maryland

In The Politics of Autism, I write about litigation under the Individuals with Disabilities Education Act. School districts prevail in most due-process hearings.  Here are some reasons:
School districts have built-in expert witnesses in the form of teachers and staff.  They also have full access to all relevant information about a proposed placement, and often deny parents access to those programs in advance of hearings. When parents’ experts can observe children in class, districts can limit their observations.   More important, parents have to foot the bill for their experts because of a 2006 Supreme Court decision that IDEA does not authorize reimbursement of witness fees. “While authorizing the award of reasonable attorney's fees, the Act contains detailed provisions that are designed to ensure that such awards are indeed reasonable,” Justice Alito wrote for the majority. “The absence of any comparable provisions relating to expert fees strongly suggests that recovery of expert fees is not authorized.” It goes without saying that this decision disadvantages all parents, and especially those with modest incomes. 
Talia Richman at The Baltimore Sun:
It’s rare for the parents of students with disabilities to prevail in legal battles against Maryland school districts. In the past five years, they’ve lost more than 85 percent of the time, state education department documents show, even after investing tens of thousands of dollars and countless hours in pursuit of a better education for their children.
Other states avoid such asymmetrical rates. [NOT CALIFORNIA, THOUGH. -- ed.]A study examining due process hearings in Texas found districts prevailed in roughly 72 percent of cases from 2011 to 2015. A similar assessment in Massachusetts found school districts won in a little more than half of the due process hearings over eight years.   
Some researchers believe districts prevail much more often because they have far greater legal and financial resources than a family does. Another explanation special education experts offer is the districts will attempt to resolve cases that are less likely to be won and go to a hearing only if they are supremely confident in their chances. Others believe judges give deference to the judgment of district officials.

“It’s always been a David and Goliath issue,” said special education attorney Selene Almazan.

Project HEAL produced a report analyzing each of the 105 due process hearings from fiscal year 2014 to the second quarter of fiscal year 2019, most of which were initiated by the parents.

Judges sided with school districts in all but 14 cases. No parents won if they represented themselves.


Wednesday, May 15, 2019

Rally Speaker Blames Disease on "lllegals"

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.

Hundreds of Orthodox Jewish families gathered in a catering hall Monday night in the Rockland County hamlet of Monsey, where they heard anti-vaccine crusaders claim that inoculations are the real health risk, and that measles can help produce growth spurts and prevent everything from cancer to heart disease.
Just one of the event’s five speakers, who were introduced as “distinguished personalities” and the “cream of humanity’s crop,” was from the Orthodox community. Rabbi Hillel Handler, who has likened vaccination to “child sacrifice” in the past, told the crowd that according to “medical research,” if you catch “measles, mumps and chickenpox, your chances of getting cancer, heart disease, and strokes goes down 60 percent.”
He also said that Hasidim were being scapegoated by New York City Mayor Bill de Blasio, who he called “a very, very sneaky fellow” and a German.
“The Jews are our misfortune,” he said, bringing up how Jews were stigmatized in Nazi Germany. “We Hasidim have been chosen as the target in order to distract from the virulent diseases that are sweeping through the city from illegals.”
The final speakers were two of the biggest names on the anti-vaccination circuit. Andrew Wakefield, the author of the fraudulent 1998 paper published then retracted in the Lancet that claimed there was a link between the Measles Mumps Rubella vaccine and autism by looking at 12 autistic children, spoke to the crowd via videoconference.
“I want to reassure you, I have never been involved in scientific fraud,” he said.
“What happened to me is what happens to doctors who threaten the bottom line of the pharmaceutical companies and who threaten government policy in the interest of their patients and that is what happened.”

Where could Rabbi Handler have gotten the idea that migrants bring disease?

Tuesday, May 14, 2019

General Anesthesia During C-Sections

In The Politics of Autism, I discuss various ideas about what causes the conditionHere is just a partial list of correlatesrisk factors, and possible causes that have been the subject of serious studies:
Maayan Huberman Samuel and colleagues have an article in The Journal of Autism and Developmental Disorders titled: "Exposure to General Anesthesia May Contribute to the Association between Cesarean Delivery and Autism Spectrum Disorder." The abstract:
Cesarean section (CS) has been consistently associated with susceptibility to autism spectrum disorder (ASD), however, the underlying mechanism for this association remains vague. Here, we studied various pre-peri-and-neonatal factors among 347 children with ASD, 117 children with other developmental delays (DD), and 2226 age, sex and ethnicity matched controls. We found that CS is significantly associated with an increased risk of ASD but not DD (p = 0.019 and p = 0.540 respectively). Furthermore, we show that only CS performed with general anesthesia (GA) elevated the risk of ASD with no significant difference between indicated and non-indicated surgeries (aOR = 1.537; 95% CI 1.026–2.302, and aOR = 1.692; 95% CI 1.057–2.709, pdiff = 0.865). We therefore suggest that exposure to GA during CS may explain the association between CS and ASD.

Monday, May 13, 2019


In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  One result of this corrosive myth is the recent upsurge of measles outbreaks.

From CDC:
From January 1 to May 10, 2019, 839** individual cases of measles have been confirmed in 23 states. This is an increase of 75 cases from the previous week. This is the greatest number of cases reported in the U.S. since 1994 and since measles was declared eliminated in 2000.
The states that have reported cases to CDC are Arizona, California, Colorado, Connecticut, Florida, Georgia, Illinois, Indiana, Iowa, Kentucky, Maryland, Massachusetts, Michigan, Missouri, Nevada, New Hampshire, New Jersey, New York, Oregon, Pennsylvania, Texas, Tennessee, and Washington.

Trends in Measles Cases: 2010-2019

*Cases as of December 29, 2018. Case count is preliminary and subject to change.
**Cases as of May 10, 2019. Case count is preliminary and subject to change. Data are updated every Monday.

Eight in Ten New Jerseyans Know Someone with an ASD Diagnosis

In The Politics of Autism, I write:
The number of people with a stake in the issue is going to mount. I am not saying that there will be a true increase in the prevalence of autism. As we saw in chapter 3, it is unclear how much of the apparent change involves awareness and diagnostic standards. Even if there has been a true increase in recent decades, there is no way of knowing whether it will go on. But the rise in the number of autism diagnoses and educational determinations will translate into a growing population of people who have lived with the autism label, and who think of themselves as autistic. Most in this category will have family members and other people who are close to them. They may be guardians or caregivers, or they may just be friends and relatives with a deep concern. Either way, autism will be part of their lives, too. Overall, the share of Americans who know someone with autism will surely top the 39 percent recorded in 2008. One study found that 60 percent of respondents in Northern Ireland knew someone with autism in their own family, circle of friends or co-workers. There is no reason to think that the figure would be lower in the United States.

A release from Rutgers (h/t Alan Greenblatt)
Eight in ten New Jerseyans say that they know someone who has been diagnosed with Autism spectrum disorder (ASD), according to the latest Rutgers-Eagleton Poll, which was conducted in collaboration with the New Jersey Autism Center of Excellence at Rutgers University.
Sixty-eight percent know an ASD-diagnosed child outside of their family, 48 percent know an ASD-diagnosed adult outside of their family, 31 percent have a child family member with ASD, and 18 percent have an adult family member.
Yet, despite these connections, few interact regularly with individuals who have Autism: about a quarter interact with an individual with Autism weekly, one in five have monthly interactions, three in ten have less frequent interactions, and a quarter have no interactions at all.
Six in ten New Jerseyans (62 percent) have seen or heard ASD referred to as a behavioral problem. A similar number (55 percent) think that a child with Autism does not have the ability to control his or her behavior.
Just over half have seen or heard ASD referred to as a brain disorder (54 percent) or mental illness (52 percent). Fewer have heard Autism referred to as a nervous system disorder (39 percent). When it comes to treatment, two-thirds of residents (67 percent) think that ASD is best treated with a combination of both medication and behavioral therapy.
“The American Psychiatric Association has already included sensory issues in the DSM-5 as part of the criteria for diagnosing Autism, yet the public still perceives Autism as a behavioral problem or mental illness more than they do a disorder of the nervous system,” said Elizabeth Torres, associate professor of Psychology and director of the New Jersey Autism Center of Excellence at Rutgers University. “This misperception of what Autism is and is not is especially detrimental to treating it in schools. Without neurologists on hand, teachers and aides may not know how to cope with the somatic and sensory-motor issues that we have measured in research settings.”
More than eight in 10 support the federal government providing financial assistance for individuals with Autism and their families.
Results are from a statewide poll of 1,008 adults contacted by live callers on landlines and cell phones from March 29 through April 9, 2019. The sample has a margin of error of +/-3.5 percentage points. Interviews were done in English and, when requested, Spanish.

Sunday, May 12, 2019

Autistic Adults

In The Politics of Autism, I write that many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism.

My older brother suffered from a severe developmental disability and mental illness. He did not speak until he was 6. Was not toilet trained until after that. This was the 1950s and early '60s, and there was little support for parents with children stricken with autism, schizophrenia and epilepsy. My aunt and uncle urged my parents to institutionalize Andy. A child like that could destroy their marriage and our family.
I wasn’t with my parents when they disdained those warnings, but I watched them calm Andy when he would freak out at the sound of screeching subway wheels or a dog on the street or pigeons at the park or the approach of garbage trucks, which he seemed afraid would swallow him. I watched them indulge his interests in order to draw him out. I watched him watching records spin round and round on the phonograph and I saw him take an LP with him into his bed and sleep next to it. I watched him take pictures with an Instamatic camera, snapping through 24 exposures in a few seconds, and I went with my mother to the drug store where she had them all developed and printed as if the random images might unlock something in Andy’s mind.
In the short-lived 1975 comedy The Hot L Baltimore, she played the eccentric mother of a never-seen son with a developmental disability.

Cos Michael has an article at Autism titled "Why We Need Research about Autism and Ageing."
Research into any lifelong condition usually follows the lifespan of individuals with that condition as a way of understanding its trajectory and to provide a point of reference against which the success of interventions can be marked. Yet, with only a few exceptions, autism research has generally excluded autistic people over the age of 40 years (Howlin and Moss, 2012; Povey et al., 2011). We know virtually nothing about what happens to us, autistic people, physically, cognitively, emotionally and socially as we pass through middle and older age.
There is so much to learn. What is the long-term outcome of autism interventions such as selective serotonin reuptake inhibitors (SSRIs) or behavioural interventions? Understanding of the experience of older generations has the potential to affect the support offered to younger people.
What we do know is that there is a much greater risk of premature mortality in autism (Heslop et al., 2013; Hirvikoski et al., 2016); on average, autistic people with additional intellectual disability die 30 years before non-autistic people (Heslop et al., 2013) – with epilepsy identified as the biggest cause of premature death in this group – and those autistic people without an intellectual disability die 12 years earlier than typical adults. We do not know why the risk of premature mortality is so high. Without research into its potential precursors, professionals lack the tools to combat this high death rate. Why invest resources in researching autism interventions in earlier years and then ignore their long-term outcomes or monitor the trajectory of autistic lives to their conclusion?

Saturday, May 11, 2019

Education Department Will Appeal on Equity in IDEA Rule

The US Department of Education will appeal a judge's decision concerning minority students in special education. Christina Samuels reports at Education Week:
Under Education Secretary Betsy DeVos, the department has moved to put off the Equity in IDEA rule by two years for further study, saying it might prompt special education quotas.
But U.S. District Court Judge Tanya Chutkan's decision March 7 vacated the Education Department's delaying action. She ruled that the delay is a violation of the Administrative Procedure Act, which governs how federal agencies propose and implement regulations.
Since that decision, there had been little word from the department—other than the notice of appeal, dated May 6—about what it planned to do in the wake of the judge's ruling. DeVos has been asked about the decision by lawmakers and recently said the department was "moving towards implementation."
In response to the U.S. Department of Education’s decision to file a notice of appeal of the March 7, 2019 judicial decision in COPAA v. DeVos, theCouncil of Parent Attorneys and Advocates (COPAA) issued the following statement:
“COPAA is aware the U.S. Department of Education has filed a notice of appeal in COPAA v. DeVos. We hope this is a procedural measure; COPAA is in the process of learning more. Of course, states are still required to carry out the Equity in IDEA regulations regardless of the legal proceedings and we urge them to come into compliance as required by law. Ideally, the Department will avail themselves to states and provide the technical assistance and support states need as they move forward to help districts with this important undertaking.”

Friday, May 10, 2019

Vaccines and Kennedys

In The Politics of Autism, I look at the discredited notion that vaccines cause autismRobert F. Kennedy, Jr. has helped spread this dangerous falsehood.

Former Maryland Lieutenant Governor Kathleen Kennedy Townsend, former Repesentative Joseph P. Kennedy II, and Maeve Kennedy McKean at Politico:
Robert F. Kennedy Jr.—Joe and Kathleen’s brother and Maeve’s uncle—is part of this campaign to attack the institutions committed to reducing the tragedy of preventable infectious diseases. He has helped to spread dangerous misinformation over social media and is complicit in sowing distrust of the science behind vaccines.
No matter what you might have read on social media, there is no scientific basis to allegations that vaccines against HPV pose a serious health threat. And numerous studies from many countries by many researchers have concluded that there is no link between autism and vaccines.

President Kennedy signed the Vaccination Assistance Act in 1962 to, in the words of a CDC report, “achieve as quickly as possible the protection of the population, especially of all preschool children ... through intensive immunization activity.” In a message to Congress that year, Kennedy said: “There is no longer any reason why American children should suffer from polio, diphtheria, whooping cough, or tetanus … I am asking the American people to join in a nationwide vaccination program to stamp out these four diseases.”
Those who delay or refuse vaccinations, or encourage others to do so, put themselves and others, especially children, at risk. It is in all our interests to make sure that immunizations reach every child on the globe through safe, effective and affordable vaccines. Everyone must communicate the benefits and safety of vaccines, and advocate for the respect and confidence of the institutions which make them possible. To do otherwise risks even further erosion of one of public health’s greatest achievements.
From Matt Carey at LBRB:
To the Kennedys: I am a father. I have an autistic child. Robert Kennedy positions himself as an ally, a champion of parents like myself. Let me make this clear: Robert Kennedy does not speak for me. He does not speak for more than a few autism parents. He certainly doesn’t speak my son or other autistics. He has been part of the effort to weaponize fear of disability to frighten people about vaccines. As such, he has added to the stigma my son faces.
There is another aspect to this you may not be aware of: the anti-vaccine community is closely tied to the worst in the alternative medicine movement. Robert Kennedy regularly speaks at autism parent conventions where therapies that can only be called abusive are promoted as “cures for vaccine injury”. Mr. Kennedy could speak out against these therapies. He could stand up and make himself heard and stop this abuse. Instead, he has remained silent.