I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu
Transplant programs are given wide latitude in deciding whether to take a patient’s disability into account. According to a Post article published in March, the 815 transplant programs in the United States may take into account neurocognitive disabilities when making decisions about lifesaving organ transplants. Whether programs do so varies. A 2008 study by the Stanford Center for Biomedical Ethics found that 43 percent of the 50 pediatric heart, liver and kidney transplant programs surveyed always or usually considered neurodevelopmental delays, while 39 percent rarely or never did.
This discretion creates an opening for ingrained stereotypes and false assumptions to influence decisions. Some transplant teams might assume that people with disabilities are incapable of making it through the rigors of a grueling marathon of medical procedures involved in a transplant, or that they’re unable to care properly for themselves post-surgery.
While the Americans With Disabilities Act explicitly prevents discrimination in medicine, there is no mechanism for enforcement. This leaves states on the front line of not just ensuring the prevention of the discrimination but also giving families an effective and time-sensitive path of recourse outside of adjudication. Our state, Oregon, in June joined California, New Jersey, Maryland, and Massachusetts in the fight. More states should adopt these policies prohibiting discrimination.
The upending of normalcy during the worst tropical weather system ever to hit Houston is particularly hard on those with special needs, and disability advocates and families are working to help them cope.
The Autism Society of Texas has providers from Austin, as well as partners in Clear Lake and north-central Houston, heading to shelters to offer resources and support, executive director Suzanne Potts said.
The organization is working with FEMA and the Red Cross to assess needs. What's en route: sensory-support bags containing stuffed animals, fidget toys, weighted blankets, earplugs and noise-canceling headphones, notepads and crayons.
"There's an overwhelming need for saneness," Potts said. "A sense of consistency and creating a routine are critical."
The Red Cross has asked for respite care and behavioral-intervention guidance for those struggling to adjust to the crowds, noise and lighting at shelters, including the George R. Brown Convention Center, Potts said. Her outfit has advised creating a dimly lit quiet space, if possible, and posting a visual schedule like that many people with autism rely on to know when meals will be served, for example.
The Autism Society also is distributing H-E-B and Walmart gift cards to anyone displaced by the storm - handy for those with dietary restrictions.
Potts suggested those at shelters find other special-needs families for comfort. And whether at a shelter or home, Potts, a licensed social worker, offered caregivers this advice: "Focus on the here and now - don't look too far forward or too far back … Manage your own self-care. Take a walk if it's safe
Federal legislation and policy increasingly seek to address minority overrepresentation in special education due to concerns that U.S. schools are misidentifying children as disabled based on their race or ethnicity. Yet whether and to what extent this is occurring is currently in dispute. We estimated racial disparities in disability identification using very large (e.g., Ns = 183,570, 165,540, and 48,560) student-level, nationally representative data sets and multivariate logistic regression including school fixed effects models along with tabulations of percentage with a disability among racial or ethnic groups across academic achievement deciles. Among children who were otherwise similar in their academic achievement, poverty exposure, gender, and English language learner status, racial or ethnic minority children were consistently less likely than White children to be identified as having disabilities. Minority children’s disability underidentification was evident (a) in elementary, middle, and high school; (b) across racially diverse groups and specific disability conditions; and (c) throughout the achievement distribution. Contrary to federal regulatory and policy efforts, minority children have been less likely than otherwise similarly achieving White children to receive special education services in the United States since at least 2003.
Autism is just one of a number of issues where anecdotes drive public discussion about risk. Psychologist Daniel Kahneman lays out the pattern: “On some occasions, a media story about a risk catches the attention of a segment of the public, which becomes aroused and worried. The emotional reaction becomes a story in itself, prompting additional coverage in the media, which in turn produces greater concern and involvement.” Individuals or groups with an interest in driving the issue then work to keep up the flow of worrying news, and to discredit anyone who questions the hype.
There are hundreds of websites and Facebook pages that claim that autism is caused by vaccines, and which promote “cures” – often substances that can be bought via that website. And the stories they share are often hugely viral.
Analysis by BuzzFeed News found that more than half of the most-shared scientific stories about autism published online in the last five years promote unevidenced or disproven treatments, or purported causes.
The analysis used data from BuzzSumo, a company that tracks social sharing across multiple platforms including Facebook and Twitter, to find the most shared webpages about autism over the past five years. It then manually extracted the top 50 that claimed to present scientific or medical information about autism, such as reports on research or stories that claimed to focus on causes, or “cures”.
Those that primarily promoted a disproven or unevidenced theory about autism (for example, ones that advocated for links with vaccines or glyphosate fertiliser, or which advanced pseudoscientific cures) were classified as “unevidenced”, while those that provided an approach based on good-quality research or objective reporting were classified as “evidenced”. The categorisation erred on the side of caution, putting ambiguous or speculative articles into the “evidenced” bracket.
It found that more than half (28 out of 50, or 56%) of the most shared stories published between August 2012 and August 2017, including both of the top two, were unevidenced. Between them, the unevidenced stories were shared 6.3 million times, compared with around 4.5 million for the evidence-based stories. The top story, “Courts quietly confirm MMR vaccine causes autism”, was shared almost a million times and appears twice on the list from two different sites. As this Forbes story from 2013 explains, it is false.
... The rise of social media has made it easy for these bubbles to form in recent years. But for parents of autistic children, it started much earlier – before Facebook even existed, and years before it reached its current ubiquity. Parents swapped stories via email and message boards, especially a bunch of sites on the Yahoo Health groups that sprang up in the late 1990s and early 2000s. They included places like as Environment of Harm, a Yahoo group set up to discuss “vaccine damage and mercury poisoning and other environmental toxins as it relates to autism”; GFCFKids, “a discussion forum for parents of children on the autism spectrum who are avoiding gluten and casein and other substances in their children’s diets”; Chelatingkids2, “for parents and/or family members of children with autism who are seeking biomedical intervention”; and Autism-Mercury, focusing on “the increasing incidence of autism [and] the potential link between excessive mercury exposure via thimerosal in infant vaccines”.
As to whether liberals or conservatives are now more likely to be opposed to vaccination, some researchers have suggested that, while anti-vaccination beliefs have spread to libertarians on the right, the anti-vaccination movement originates and finds its strongest support in the political left. A later article by the same researchers similarly argues that Centers for Disease Control and Prevention (CDC) evidence shows that states that voted for Obama in 2012 have higher rates of nonmedical vaccination exemptions.
Yet, other research suggests that it is in fact conservatives who are more likely to believe that vaccines cause autism, that it is liberals who are more likely to endorse pro-vaccination statements and that the more strongly someone identifies with the Republican Party, the more likely he or she is to have a negative opinion of vaccination.
The Pew Research Center has conducted two surveys that asked about vaccination. One survey in early 2015 asked respondents about whether they thought vaccines were safe, and another survey in late 2014 asked respondents about U.S. vaccination policy and whether vaccination for children should be required or a parent’s choice.
When relating the answers to these questions in the Pew surveys to people’s political views, I find an interesting divergence. The more conservative and also the more liberal someone is, the more likely he or she is to believe that vaccination is unsafe.
Yet only those who are very conservative are more likely to believe that vaccination should be a parent’s choice. This suggests the social dynamics that shape Americans’ personal beliefs about vaccine safety are not the same as the social dynamics that shape their views about whether parents can decide not to vaccinate their children.
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 such as the current floods in Texas.
After natural disasters, children are likely very frightened and may need help better understanding what happened.
Individuals with ASD tend to be inquisitive, seeking to learn more about topics they are interested in. They may start talking a lot about floods, other natural disasters, death and tragedy. Below are some suggestions to help in processing information for children on the spectrum:
As long as government funds so much research, politics will shape the questions that scientists ask and determine the kinds of research that receive funding. Politics will even influence which scientists the policymakers will believe and which findings will guide public policy. In the end, science cannot tell us what kinds of outcomes we should want. ABA “works” in the sense that it helps some autistic people become more like their typically developing peers. Most parents regard such an outcome as desirable, but not all people on the spectrum agree.
One of the major roadblocks to making progress in this area is perhaps one of the most basic—there is little consensus on what outcomes are actually good outcomes and thus should be the target of services and intervention.
Given the many potential areas of need, it is unclear which potential aspects of adult life, if altered, would have the greatest impact on well-being and quality of life. If an adult with autism has few friends, does this indicate a “bad” outcome? Given the heterogeneity of autism, it is likely that some adults could be distressed by this situation whereas others would find it satisfying. Is paid employment always an indicator of a “good” outcome? Or is the fit of the vocational activity to the interest and skills of the individual more important? Should community living be considered a “good” outcome for all? As researchers, we often make value-based decisions about what activities we consider to be a good outcome, yet the very same activity or type of activity might have a different meaning to adults across the autism spectrum.
Perhaps then, one should take a personalized approach, allowing each person and family to define which outcome is the most important to target for that person. However, that approach is problematic for research purposes, when some degree of commonality and standardization is necessary. It may be that a hybrid of standardized and personalized approaches will be most helpful when defining “good” outcomes—particularly given the vast heterogeneity observed across numerous domains among adults with autism.
The latest available data from the federal courts show that civil rights suits against schools have more than doubled during the last four years. During July 2017 the government reported 51 new civil lawsuits over alleged violations of civil rights involving schools, colleges and other educational institutions. According to the case-by-case court records analyzed by the Transactional Records Access Clearinghouse (TRAC) at Syracuse University this brings the total of such suits to 497 during the first ten months of FY 2017. ...
If a similar pace of filings continues through the end of FY 2017, civil rights filings involving educational institutions will reach an estimated 596 during a single year. This would be the largest number recorded since the court began tracking this class of cases in October of 2011.
... During FY 2017, the largest volume of litigation involved the treatment of students with disabilities. Over four out of ten suits (41.6%) cited a cause of action based upon this allegation vis-Ã -vis students. When broader claims under the Americans with Disabilities Act and related statutes were added that might involve job applicants or employees, the percentage climbed to just under half of all suits that named disability issues.
Autism is “political” in a broader sense. Political conflict involves ideas and arguments for which the information is often murky, incomplete, interpretive, and open to manipulation. Just about everything concerning autism is subject to dispute. What is it? What causes it? How many different kinds of it are there? Who has it? What can we do about it? Is it even the right problem to be thinking about?
Even the graphic art is cause for argument.
At Autism, Morton Ann Gernsbacher and colleagues have an article titled: "Do Puzzle Pieces and Autism Puzzle Piece Logos Evoke Negative Associations?" The abstract:
Puzzle pieces have become ubiquitous symbols for autism. However, puzzle-piece imagery stirs debate between those who support and those who object to its use because they believe puzzle-piece imagery evokes negative associations. Our study empirically investigated whether puzzle pieces evoke negative associations in the general public. Participants’ (N = 400) implicit negative associations were measured with an Implicit Association Task, which is a speeded categorization task, and participants’ explicit associations were measured with an Explicit Association Task, which is a standard task for assessing consumers’ explicit associations with brands (and images of those brands). Puzzle pieces, both those used as autism logos and those used more generically, evoked negative implicit associations (t(399) = –5.357, p < 0.001) and negative explicit associations (z = 4.693, p < 0.001, d = 0.491). Participants explicitly associated puzzle pieces, even generic puzzle pieces, with incompleteness, imperfection, and oddity. Our results bear public policy implications. If an organization’s intention for using puzzle-piece imagery is to evoke negative associations, our results suggest the organization’s use of puzzle-piece imagery is apt. However, if the organization’s intention is to evoke positive associations, our results suggest that puzzle-piece imagery should probably be avoided.
Minnesota’s worst measles outbreak in decades has unexpectedly energized anti-vaccine forces, who have stepped up their work in recent months to challenge efforts by public health officials and clinicians to prevent the spread of the highly infectious disease.
In Facebook group discussions, local activists have asked about holding “measles parties” to expose unvaccinated children to others infected with the virus so they can contract the disease and acquire immunity. Health officials say they are aware of the message posts but haven’t seen evidence that such parties are taking place.
The activists also are using social media to urge families who do not want to immunize their children or who believe their children have been harmed by vaccines to meet in Minneapolis this week with associates of Andrew Wakefield, the founder of the modern anti-vaccine movement. The associates have been touring the United States and abroad with the former doctor’s movie, “Vaxxed: From Cover-up to Catastrophe,” which repeats the debunked theory that vaccines cause autism and that scientists, pediatricians and the public health system are part of an elaborate conspiracy. A recent fundraiser at the clinic of a suburban Minneapolis pediatrician who supports “alternative vaccine schedules” benefited a second film that also will feature Wakefield, whose research has been retracted for falsehoods.
Robert Kennedy Jr., the environmental activist and leading vaccine skeptic, says that it has been months since he has talked with White House officials about chairing a vaccine safety commission — and that the idea of such a panel may no longer be under consideration.
“I’ve had no discussions specifically about the vaccine safety commission, probably since February,” Kennedy told STAT. “You’d have to ask the White House. It may be that it’s evolved.”
Kennedy said, however, he has met with a series of top administration officials about vaccine safety since Trump took office, including officials at the upper ranks of the Food and Drug Administration and National Institutes of Health. He said those meetings took place at the request of the White House.
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.
For children under three, the first stop is an Individualized Family Service Plan (IFSP), which maps out Early Intervention (EI). After age three, children get an Individualized Education Program (IEP) from their local education agency (LEA), that is, their school system. The IEP explains how children will receive a free appropriate public education (FAPE) in the least restrictive environment (LRE) The program may include speech therapy (ST), occupational therapy (OT), physical therapy (PT), adapted physical education (APE), and applied behavior analysis (ABA) interventions including discrete trial training (DTT). Depending on which state they live in, official agencies or insurance companies may also subsidize services from NPAs (nonpublic agencies). As attorney Gary S. Mayerson observes drily: “Given the confusion that all these unhelpful acronyms are causing for parents and professionals, it is not without irony that autism is associated with communication dysfunction.”
Autism is political. It involves all kinds of government policy – from provision of education and social services, to regulation of insurance companies and medical professionals, to public funding of scientific research into its causes and treatment. The connections between government and autism reach farther than most people know. For example, many police officers and other first responders get training in how to deal with autistic people, who might react in unexpected ways during emergencies and crime investigations. Many organizations lobby policymakers and try to influence what government does about issues involving autism. Thomas Insel, director of the National Institute of Mental Health (NIMH), told journalist Andrew Solomon: “We get more calls from the White House about autism than about everything else combined.”
Autism is “political” in a broader sense. Political conflict involves ideas and arguments for which the information is often murky, incomplete, interpretive, and open to manipulation. Just about everything concerning autism is subject to dispute. What is it? What causes it? How many different kinds of it are there? Who has it? What can we do about it? Is it even the right problem to be thinking about? All of these questions, and many others, are the stuff of bitter political battles. The stakes are high: according to one estimate, the national cost of supporting people with autism adds up to $236 billion per year. Of course, such numbers themselves entail controversy. An alternative perspective is that they do not represent the cost of autism, but rather the cost of discrimination against people who have it, and the failure to help them lead independent lives.
According to the Centers for Disease Control and Prevention, one out of 68 — or roughly 1.2 million — people under the age of 21 in the U.S. is diagnosed with autism. While there are no reliable figures of how many autistic people are incarcerated, a 2015 report by the Department of Justice's Bureau of Justice Statistics found that 2 in 10 prisoners and 3 in 10 jail inmates reported having a cognitive disability. With more than 2.3 million people imprisoned in the U.S., it's fair to conclude that thousands of diagnosed and undiagnosed autistic people are behind bars with little to no support. ... As a prison volunteer, I've seen countless inmates over the years who were clearly developmentally disabled and yet stuck in a revolving door of incarceration. One inmate in particular named Manny sticks out in my mind. He was a large man, over six feet tall with large arm muscles and knuckles that bore the scars of many past fights.
It was my first time in a prison as a volunteer and I was nervous. Manny entered the cafeteria and immediately began waving at all of the corrections officers and inmates as they passed. A few patted him on the back and I could see him stiffen for a moment each time, his smile faltering, before he saw another familiar face and the smile returned. He noticed me and came over to say hello. He avoided eye contact, preferring to look at my shoulder. But he was curious as to who I was and eager to introduce himself. I reached out my hand but his smile faltered so I waved instead. That brought the smile back. He turned away and went to sit near the wall.
"Manny is very sweet, until he gets mad," the female officer standing nearby told me. "He goes crazy when he gets into a rage. Things just set him off. He's like a kid in many ways."
Another officer later told me that many correctional officers suspected he may be autistic, but without an official diagnosis, his violent outbursts led to more charges and stints in solitary because no one really understood how to handle him. That lack of understanding is a huge problem within the U.S. justice system today
This happened a few months ago, but in light of recent events in Charlottesville, it is timely.
Charlotte Helene Fien, 21, has Down Syndrome and autism. She sent her speech to the British House of Lords, from where it was forwarded to the United Nations Human Rights Committee at the United Nations, Geneva. where she delivered it in person on March 20.
Good afternoon my name is Charlotte Helene Fien.
I am 21 years old and have Down's syndrome and Autism.
In the 1930's and 1940's the Nazis decided to get rid of all disabled people.
More than 200,000 disabled people were murdered including many children with Down's syndrome.
Today, the same thing is happening.
A test that checks for Down's syndrome is being used to kill all babies with Down's syndrome. In Iceland, Denmark and China not a single baby with Downs Syndrome has been born for 7 years, SEVEN YEARS!
The goal is to eradicate Down's syndrome in future.
This makes me angry and very sad.
I have Down's syndrome.
I am not suffering.
I am not ill.
None of my friends who have Down's syndrome are suffering either.
We all live happy lives.
We go out to the pub,
have dinner parties at my friend Aimee's house,
have boyfriends and
have plans and goals for the future!
We just have an extra chromosome we are still human beings.
We are human beings.
We are not monsters
don't be afraid of us.
We are people with different abilities and strengths.
Don't feel sorry for me,
my life is great!
My goals are to find a job I love.
I love golf and would like to teach children to play.
I've been playing golf since I was 6 years old.
I want to live independently one day and support myself with my job.
I already travel on my own to different places even abroad.
Don't be afraid of me or feel sorry for me.
I'm just like you
I'm just like you but different.
I have an extra chromosome
it's not stopping me from enjoying my life.
Please do not try to kill us all off.
Do not allow this test.
If you do allow it you are no better than the Nazis
who killed 200,000 disabled people.
I have a right to live
and so do other people
like me"
YouTube link to hear her speak - https://youtu.be/1Xqku6RwaAY
When a pregnancy is under way, doctors can detect certain kinds of disorders, but neither amniocentesis nor any other prenatal test can currently tell us whether a fetus will become autistic. Suppose that such a test did exist. “The best case use of a prenatal test at the moment would be if you could say to a parent, your child has got an 80 percent likelihood of autism and so once the baby's born, we would like to keep a close eye on that child in case they need extra support like speech therapy or social skills training or some sort of behavioral approach,” says leading autism scientist Simon Baron-Cohen. But would the “best case use” be the most common? When amniocentesis indicates Down Syndrome, most mothers choose abortion. A study of autism parents in Taiwan found that just over half would abort if a prenatal test indicated that their next child would be autistic. We cannot be sure what the figures would be if such tests were available in the United States, but it seems likely that a large share of autism pregnancies would end in abortion.
Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women -- close to 100 percent -- who received a positive test for Down syndrome terminated their pregnancy.
While the tests are optional, the government states that all expectant mothers must be informed about availability of screening tests, which reveal the likelihood of a child being born with Down syndrome. Around 80 to 85 percent of pregnant women choose to take the prenatal screening test, according to Landspitali University Hospital in Reykjavik.
...
Using an ultrasound, blood test and the mother's age, the test, called the Combination Test, determines whether the fetus will have a chromosome abnormality, the most common of which results in Down syndrome. Children born with this genetic disorder have distinctive facial issues and a range of developmental issues. Many people born with Down syndrome can live full, healthy lives, with an average lifespan of around 60 years.
Other countries aren't lagging too far behind in Down syndrome termination rates. According to the most recent data available, the United States has an estimated termination rate for Down syndrome of 67 percent (1995-2011); in France it's 77 percent (2015); and Denmark, 98 percent (2015). The law in Iceland permits abortion after 16 weeks if the fetus has a deformity -- and Down syndrome is included in this category.
The story quotes a pregnancy counselor:
"We don't look at abortion as a murder. We look at it as a thing that we ended. We ended a possible life that may have had a huge complication... preventing suffering for the child and for the family. And I think that is more right than seeing it as a murder -- that's so black and white. Life isn't black and white. Life is grey."
At The Daily Caller: Eric Lieberman reports on James Damore, the Google engineer who lost his job after questioning diversity policies. On a Reddit "“ask me anything” (AMA) session, he speculated that he might be on the spectrum.
“Hello James. I have been diagnosed with Autism Spectrum Disorder and I recognised a lot of myself in your interviews,” Reddit user “TheKingsRaven” said. “I was curious if you’ve ever been diagnosed with ASD/Autism/Aspbergers [sic]yourself? Sorry if this is too personal.”
Damore appeared to have no qualms with the question, answering in a straightforward, apparently honest way.
“I am likely on the spectrum,” Damore said, “because my thinking is very pattern oriented and I didn’t start talking until much later than normal.”
Another Redditer then asked if people with ASD innately have problems with leadership, drive for success, or ideas in general.
“I’m not sure, I haven’t read enough [on] autism and those on the spectrum can be very different than the most extreme,” Damore responded. “I personally have problems with leadership and don’t have as high a drive for success as others.”
At Vaccine, Mark Dredze and colleagues have an article titled "Vaccine Opponents’ Use of Twitter during the 2016 US Presidential Election: Implications for Practice and Policy."
These patterns show that those endorsing vaccine refusal are significantly more engaged with Mr. Trump than with other candidates. This engagement increased after the election. Given the increased energy of the vaccine refusal community, and early actions from the Trump administration, we may see policy proposals (including increased pressure on state governments from both federal and grassroots sources) aimed at addressing erceived vaccine safety concerns. Even small changes can have consequences, since prevention of communicable diseases that impact children requires long-term, consistent effort.
People’s inability to update their memories in light of corrective information may have important public health consequences, as in the case of vaccination choice. In the present study, we compare three potentially effective strategies in vaccine promotion: one contrasting myths vs. facts, one employing fact and icon boxes, and one showing images of non-vaccinated sick children. Beliefs in the autism/vaccines link and in vaccines side effects, along with intention to vaccinate a future child, were evaluated both immediately after the correction intervention and after a 7-day delay to reveal possible backfire effects. Results show that existing strategies to correct vaccine misinformation are ineffective and often backfire, resulting in the unintended opposite effect, reinforcing ill-founded beliefs about vaccination and reducing intentions to vaccinate. The implications for research on vaccines misinformation and recommendations for progress are discussed.
From the article:
Our pattern of results thus confirms that there should be more testing of public health campaign messages. This is especially true because corrective strategies may appear effective immediately yet backfire even after a short delay, when the message they tried to convey gradually fades from memory, allowing common misconceptions to be more easily remembered and identified as true [25]. This is the case of one of the most frequently used corrective strategy employing the myths versus facts format, which often backfires because the simple repetition of the myth, though well-intended and necessary in order to contrast it with the available evidence, paradoxically amplifies the familiarity of that false claim making it seem even more believable and widely-shared [46]. This happens, at least partly, because people tend to mistake repetition for truth, a phenomenon known as the “illusory truth” effect [22, 23]. Familiarity appears as a key determinant of this effect; indeed, when something seems familiar is easier to process and one is more inclined to believe it [24], regardless of whether the statement is factually true or false [22, 47] or was initially rated as credible or questionable [48].
At nearly 750 schools, 90% or fewer kindergartners had been fully vaccinated last year, the analysis found. Experts say the rate should be at least 95% to prevent the spread of highly contagious diseases such as measles.
California’s tougher inoculation law, known as SB 277, was approved in 2015 after a measles outbreak that originated at Disneyland. The law bars parents from citing religious or personal beliefs to excuse their children from immunizations, but some who already had such exemptions were allowed to keep them.
The rest of the unvaccinated children need a form signed by their doctor saying they had a medical reason not to get their shots.
In the school year that began last fall, the law’s first year, the number of kindergartners in California with medical exemptions tripled, the analysis found [from 991 to 2850]
In The Politics of Autism, I discuss interactions between police and autistic people. When autistic people violate the law, to what extent should the courts hold them responsible? The answer is the same as for NT people: it depends on the individual case.
As a neurodevelopmental condition that affects cognitive functioning, autism has been used as a test case for theories of moral responsibility. Most of the relevant literature focuses on autism’s impact on theory of mind and empathy. Here I examine aspects of autism related to executive function. I apply an account of how we might fail to be reasons responsive to argue that autism can increase the frequency of excuses for transgressive behavior, but will rarely make anyone completely exempt from moral responsibility in general. On this account, although excuses may apply more often to autists than to others, the excuses that apply to autists are just the same excuses that can apply to anyone.
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, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.
At Autism, Michael Ayres and colleagues have an article titled "A Systematic Review of Quality of Life of Adults on the Autism Spectrum." The abstract:
Autism spectrum disorder is associated with co-existing conditions that may adversely affect an individual’s quality of life. No systematic review of quality of life of adults on the autism spectrum has been conducted. Our objectives were as follows: (1) review the evidence about quality of life for adults on the autism spectrum; (2) critically appraise current practice in assessing quality of life of adults on the autism spectrum. We searched bibliographic databases and other literature to identify studies using a direct measure of quality of life of adults on the autism spectrum. Hand searching of reference lists, citation searching and personal communication with field experts were also undertaken. In total, 827 studies were identified; 14 were included. Only one quality of life measure designed for use with the general autism spectrum population was identified. Quality of life of adults on the autism spectrum is lower than that of typically developing adults, when measured with tools designed for the general population. There are no comprehensive autism spectrum disorder–specific quality of life measurement tools validated for use with representative samples of adults on the autism spectrum. There is a pressing need to develop robust measures of quality of life of autistic adults.
The perspective of autistic people on these issues can be quite different from that of non-autistic people. From the article:
[We] need to also be mindful that autistic individuals may value some experiences and activities more/less than people without ASD (Tavernor et al., 2013). For example, time spent on repetitive behaviours and on circumscribed or particular interests may be considered more desirable than some activities undertaken by typically developing adults; social and group activities may be valued less by autistic adults. Therefore, the items included in these specific domains of assessment tools developed for and validated with the general population may lack validity when used with autistic individuals.
The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.
The National Advertising Division (NAD) of the Council of Better Business Bureaus recommended this week that Neurocore “discontinue its testimonials.” The NAD said a review of the company’s claims, and their supporting evidence, led it to conclude that “the advertiser’s evidence was insufficiently reliable to substantiate the strong health-related advertising claims.”
According to the NAD, these claims include statements such as, “81% of children who come to us on ADHD meds and complete our program are able to reduce or eliminate their use of medications upon program completion,” as well as claims that Neurocore services produced a “25% reduction in reported symptoms on the autism evaluation checklists.”
The problem with the company’s claims, according to the NAD, is that they relied on a study of their own patients and those patients’ self-assessments. ... Advocates for students with disabilities including autism were especially alarmed by DeVos’ connection to Neurocore — a company that claimed its treatments produced a “25% reduction in reported symptoms on the autism evaluation checklists.”
“We have a lot of evidence-based treatments that actually do help children with autism,” Fred Volkmar, director of the Yale Child Study Center, told Spectrum News, a news site dedicated to autism research, in February. Volkmar said that DeVos’ awareness of treatments seemed to be limited to the one that “has not yet been shown to be effective.”
A "large" number of South Carolina children suffering from autism are not getting access to medically necessary treatment they need because the state pays the lowest therapy rates in the nation, a lawyer representing advocates and organizations has told federal Medicaid officials.
In a letter to the U.S. Centers for Medicare and Medicaid dated June 29, the advocates urge federal officials to direct the state Department of Health and Human Services to increase their reimbursement rates for applied behavior analysis treatments, what advocates believe offers the most hope for many who suffer from autism.
"Our most immediate concern is that a large number of South Carolina children are being deprived of access to prescribed, medically necessary ABA treatment because SCDHHS’ substandard reimbursement rate for these services — the lowest in the country, by far — has resulted in a lack of providers of this desperately needed care," Daniel Unumb wrote for the Autism Legal Resource Center and seven advocates and their organizations.
Unumb is the husband of Lorri Unumb, vice president of Autism Speaks and a new appointee for the state Department of Disabilities and Special Needs Commission. She also signed the letter.
My name is Katie Franke, and I am a doctoral candidate in school psychology at the University of South Carolina. If you are a caregiver of a teen with ASD (ages 13-18), I invite you and your teen to participate in an on-line research study of strengths and well-being. The online questionnaire (password: research) takes 20-30 minutes total to complete. A caregiver completes the first part, and the teen completes the second part. Participants can enter to win one of eight $25 Amazon.com gift cards!
A recent study by Penn Medicine researchers published online ahead of print in the Journal of the American Academy of Child & Adolescent Psychiatry found that thecosts associated with the Early Start Denver Model (ESDM), one evidence-based treatment for young children with autism, were fully offset after only two years following intervention due to reductions in children's use of other services.
The Early Start Denver Model (ESDM) is designed for children with autism ages 12 to 48 months. The program includes a developmental curriculum and a set of teaching procedures that are delivered by therapy teams and parents either in a clinic or the child's home. A randomized trial of 48 children between 18 and 30 months of age who were diagnosed with ASD found that children who received ESDM had better cognitive and behavioral outcomes than children who received community treatment. The present study of associated costs used data that was collected during that trial and for two years after the trial was completed.
During the intervention, children who received the ESDM had average annual health-related costs that were higher by about $14,000 than those of children who received community-based treatment, although this difference was not statistically significant.
The higher cost of ESDM was partially offset during the intervention period because children in the ESDM group used fewer community services like early intervention and speech therapy. In the post-intervention period, compared with children who had not received ESDM, children in the ESDM group used fewer early intervention services, less occupational or physical therapy, and less speech therapy, resulting in cost savings of about $19,000 per year per child. While the exact reasons for this reduction in service use aren't known, it is likely that children who were in the ESDM group used fewer services because they had made developmental gains to the point that their parents thought that they no longer needed those services.
Zuleyha Cidav, PhD, the lead author of the study, and a research assistant professor at the Center for Mental Health Policy and Services Research says that the findings demonstrate the economic value of identifying young children with autism and providing early high-quality, intensive and comprehensive developmental behavioral treatment.
"Prior studies have found that community-based early intervention costs between $40,000 and $80,000 per year," Cidav said. "We found that the high-quality, university-based early intervention delivered in this study costs about $45,580. This suggests that the issue is not how much we spend on early intervention, but rather how we use that money most effectively to scale up such interventions so that they are effective in community settings."
According to the study's senior author, David Mandell, ScD, a professor of Psychiatry and director of the Center for Mental Health Policy and Services Research, prior studies that relied on simulated data to estimate the return on investment of early intervention generally found that it would take decades to see a financial return on investment.
"We wanted to show what the short term payoff would be if payers invested in early intensive treatment for children with autism," Mandell said. "Much to our surprise, we found that the entire additional cost associated with high-quality intervention as opposed to traditional community services, which often are not as intensive or as of high quality, was completely offset within two years."
... In the United States, the two largest funders of early intervention services for children with autism are the Department of Education and Medicaid.In Pennsylvania alone, Medicaid pays roughly $130 million each year for special education services like behavioral health therapists and occupational and physical therapy in schools. Mandell says his team's study is particularly important in the current political climate, where cuts to funding for Medicaid and special education are regularly being debated by elected officials.
One in 68 U.S. children has autism — 1 in 42 boys — and that rate has steadily increased since researchers began tracking it in 2000.
But just 58 percent of people with autism were employed in 2015. That’s far lower than the overall employment rate, and also the overall rate for people with disabilities.
More people with autism in films and on TV — portrayed accurately — help fix that.
“There’s an unemployment rate that’s ridiculously high,” Matt Asner, vice president of development at the Autism Society of America, told Healthline.
He said people with autism are “model employees,” and that employers need to step up and hire them.
“But in order for that to happen, we need to educate employers on what autism is, and I think film and TV does a great job at that,” he said.
“The greatest thing that’s happening right now…is that we’re starting to see people talk about autism in a very respectful way. We’re seeing people weave it into the lives of the people on-screen instead of making a statement about it,” Asner said. “They’re dealing with autism the way it should be dealt with, just as a part of life."
