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Wednesday, March 21, 2018

Autism Society Disagrees with Education Department on Racial Disaparities

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

On February 27, the U.S. Department of Education published a notice of proposed rulemaking (NPRM) to postpone the compliance date of the “Equity in IDEA” or “significant disproportionality” Rule by two years until July 1, 2020. For children three through five, the Rule would be postponed for four years until 2022. When Congress last reauthorized the IDEA in 2004, it sought to correct disparate treatment of students of color with disabilities by requiring states, for the first time, to identify school districts with, and direct federal resources to address, gross inequities. The Autism Society opposes this action that delays important resources going to states and schools to correct these inequities. The GAO found that in 2010, states required only two percent of all districts to use IDEA funds for early intervening services to address the overrepresentation problem. The CCD Education Task Force immediately responded to the NPRM, saying “We have long been aware and research shows that students of color and other minorities are disproportionately referred to special education and subject to unfair discipline practices. There is no good reason for this delay.” Senator Patty Murray (WA) and Rep. Bobby Scott (VA), ranking members of the Senate and House Education Committees, also issued a strong statement opposed to the action. The deadline to provide comments is May 13, 2018. The Autism Society will provide comments and will be encouraging affiliates to respond.

Tuesday, March 20, 2018

Kevin and Avonte's Law in the Omnibus?

The Politics of Autism discusses the problem of wandering, which has been the topic of legislation before Congress.

From the Autism Society:
Congress is set to unveil a funding plan for FY 2018, and we hear that inclusion of Kevin and Avonte’s Law in the final appropriations bill is on the table. We need your help to garner support for this option to protect families.
First introduced in 2016, and again late last year, Kevin and Avonte’s Law would provide U.S. Department of Justice grants to law enforcement, nonprofits, and other community organizations to facilitate the development of training resources to better respond to wandering incidents. The bill reauthorizes the expired Missing Alzheimer’s Disease Patient Alert Program, and broadens it to support to people with autism and other developmental disabilities. With 42 percent of wandering cases involving children nine years or younger resulting in fatal outcomes, it is critical Kevin and Avonte’s Law gets the attention it deserves as soon as possible.
Please call (202) 224-3121 TODAY and urge your Senators and Representatives to support the inclusion of Kevin and Avonte’s Law in the omnibus package. Now is the time for everyone to encourage Congress to take this necessary step in order to prevent more tragedies and to keep families safe.

Monday, March 19, 2018

The EMPOWER Act and Money Follows the Person

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities.  Home and Community-Based Services (HCBS) are particularly important.

A 3/15 release from Rep. Brett Guthrie:
Congressman Brett Guthrie (R-KY) and Congresswoman Debbie Dingell (D-MI) today introduced the Ensuring Medicaid Provides Opportunities for Widespread Equity, Resources (EMPOWER) and Care Act (H.R. 5306) to ensure that Medicaid beneficiaries can receive the best long-term care possible in their communities or in their own homes.
The federal Money Follows the Person Demonstration Program was first authorized in 2005 and allows certain Medicaid beneficiaries, mainly those with disabilities, to receive long-term care services in their own homes. The program provides a way for elderly and disabled patients to move from institutional care to home or community-based services. The Kentucky Transitions program has been able to help hundreds of Kentuckians make this transition. 
From Rep. Dingell:
At the end of 2015, 43 states and the District of Columbia were participating in the MFP demonstration. As part of an evaluation provided to Congress in a 2017 report, the U.S. Department of Health and Human Services concluded there is strong evidence beneficiaries’ quality of life improves when they transition from institutional to community-based long-term care system. The report also found that on average, monthly expenditures for beneficiaries participating in the demonstration program declined by 23 percent during the first year, saving Medicare and Medicaid $978 million.
Dingell and Guthrie’s legislation to continue and improve the program is supported by a large coalition of aging and disability organizations.
“Autism Speaks recognizes the critical importance of Medicaid-funded Home and Community Based Services (HCBS) to individuals with autism and their families,” said Angela Geiger, President and CEO Autism Speaks. “Reauthorizing the Money Follows the Person (MFP) program would benefit individuals across the country who are waiting for HCBS. We strongly support the EMPOWER Care Act and urge Congress to pass this important piece of legislation.”
For more information on the EMPOWER Care Act, please click here.

Sunday, March 18, 2018

Banning Aversives

In The Politics of Autism, I write:
For those who remain at larger residential institutions, the horrors of yesteryear have generally ended. In 2012, however, a ten-year-old video surfaced, showing disturbing image of an electric shock device at the Judge Rotenberg Center in Canton Massachusetts. Staffers tied one student to a restraint board and shocked him 31 times over seven hours, ignoring his screamed pleas to stop. The Rotenberg Center is the only one in the nation that admits to using electric shocks on people with developmental disabilities, including autism. Center officials said that they had stopped using restraint boards but insisted that shocks were necessary in extreme cases to prevent officials insist the shock program is a last resort that prevents people with severe disorders from hurting themselves or others. Though a majority of the FDA’s Neurological Devices Panel said that such devises pose “an unreasonable and substantial risk of illness or injury,” the agency had not banned them as of 2014.
ADAPT praises Congressman Chris Smith (R-NJ), a long-time champion on autistic community issues, who is showing leadership yet again by committing to the introduction of a legislation that would ban the use of electric shock devices that are used as a form of “therapy” for disabled people, like the devices used by the Judge Rotenberg Center (JRC). ADAPT and other disability-led organizations have long fought to end the use of these electric shock devices on disabled people, which are made to be stronger than a police taser and have been used to shock disabled people for minor infractions, such as not taking off a coat in a timely manner.
In announcing Congressman Chris Smith determination to put an end to these horrific devices, Congressman Smith said “The use of electrical stimulation devices to “treat” individuals with disabilities as “aversion therapy” is torture-plain and simple. This practice is absurd and degrading, with the UN Special Rapporteur on Torture specifically singling out this practice as a human rights violation. The abuses at the Rotenberg Center need to end, and the FDA-which has for two years both under Presidents Obama and Trump failed to finalize regulations to ban these electric shock devices for aversive therapy-must protect the rights of the vulnerable and ban these devices immediately.”
“Congressman Smith has come through once again for the Disability Community” said ADAPT member Cal Montgomery of Illinois. “We have been fighting for years to end the torture of disabled people who have been subjected to electric shocks. Thanks to Representative Chris Smith we are much closer to ending the use of graduated electronic decelerators to punish disabled children and adults.”
ADAPT members from across the nation have been camped out for eight days outside FDA Commissioner Scott Gottlieb’s home in Washington, D.C. demanding that he release regulations that would do exactly what Congressman Smith is planning to do legislatively – to put an end to this violent treatment by banning these electric shock devices. “I am so glad that this legislation was taken up by a member of Congress who not only introduces legislation but has a track record of getting bills passed,” said Anita Cameron, an organizer with ADAPT. “It is shameful that the FDA wouldn’t release regulations banning these devices. Torturing disabled people is obviously wrong and our country needs to do better. We are thankful to Congressman Smith for leading the way when the FDA would not.”
“We will not rest until this legislation has passed and disabled people are safe from these kinds of abuse” said ADAPT organizer Mike Oxford. “We have worked long and hard for this and we are grateful to Congressman Chris Smith for working with us to make it a reality.”
For decades ADAPT has worked to secure for disabled Americans the same rights and liberties enjoyed by all other Americans. Learn more about ADAPT’s history and activities at, on social media with the NationalADAPT Facebook page and on the @NationalADAPT Twitter, and under the hashtag #ADAPTandRESIST. You can also follow the fight against the JRC shock device at and #StopTheShock.

Saturday, March 17, 2018

Autism Society Opposes 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:
Last month, the House of Representatives passed the ADA Education and Reform Act (H.R. 620) to the dismay of many in the disability community. The bill creates a system whereby individuals whose rights are violated under the Americans with Disabilities Act (ADA) must undergo additional and burdensome hurdles to enforce their civil rights. For nearly 28 years, the ADA has provided pathways for people with disabilities to engage and interact with society. H.R. 620 unravels decades of progress, making it harder for people with disabilities to actively participate in their communities. The Autism Society continues to work with national disability organizations to ensure the Senate fails to pass H.R. 620 or similar legislation. State and local affiliates are encouraged to sign on to a CCD letter urging the Senate not to introduce ADA notification legislation.

Senator Tammy Duckworth (D-IL) is preparing a letter to Senators McConnell (R-KY) and Schumer (D-NY) telling them they should not bring forward H.R.620 or any similar bill to the Senate floor. We need help getting additional Senators to sign a letter opposing H.R. 620 or similar measure in the Senate. Please take a minute to call your Senators and ask them to sign-on to the "Duckworth ADA letter protecting the rights of people with disabilities.”

Friday, March 16, 2018

Co-Occurring Conditions

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.

The abstract:
We compared the prevalence of various medical and behavioral co-occurring conditions/symptoms between 4- and 8-year-olds with autism spectrum disorder (ASD) from five sites in the Autism and Developmental Disabilities Monitoring Network during the 2010 survey year, accounting for sociodemographic differences. Over 95% of children had at least one co-occurring condition/symptom. Overall, the prevalence was higher in 8- than 4-year-olds for 67% of co-occurring conditions/symptoms examined. Further, our data suggested that co-occurring conditions/symptoms increased or decreased the age at which children were first evaluated for ASD. Similarly, among the 8-year-olds, the prevalence of most co-occurring conditions/symptoms was higher in children with a previous ASD diagnosis documented in their records. These findings are informative for understanding and screening co-occurring conditions/symptoms in ASD.
From the article:
[F]indings from this study are informative and useful to policymakers, clinicians, and earlyintervention specialists. These data may inform policymakers on the type of screening programs that may provide the best opportunity to capture most co-occurring conditions/symptoms during routine evaluations of children with ASD. Since co-occurring conditions can be found even at a young age, clinicians may use these data to support screening for co-occurring conditions/symptoms and provide specific interventions. As reported by others, the high prevalence and the diversity of co-occurring conditions/symptoms in ASD suggest the need for a comprehensive system of care for these children. Assessment of co-occurring conditions/symptoms at an early age may provide opportunity for early identification of children with ASD, since these conditions/symptoms increase the likelihood to be in contact with different health care providers.

Thursday, March 15, 2018

Trump Fails to Convene Disability Committees

Michelle R. Davis at Disability Scoop:
Lawmakers are urging the Trump administration to convene multiple committees tasked with advising the federal government on disability issues that appear to have been put on hiatus.
The three panels — The President’s Committee for People with Intellectual Disabilities; The National Institute on Disability, Independent Living and Rehabilitation Research Advisory Committee; and the Interagency Committee on Disability Research — typically meet quarterly or several times a year, but have been less active as of late, according to six Democratic senators.
In a letter sent this month to Lance Robertson who heads the U.S. Department of Health and Human Services’ Administration for Community Living, the senators expressed concern that the panels “were largely ignored in 2017” leading to less input from people with disabilities and other advocates on federal policy.
“The administration’s failure to convene these committees and councils is a clear stifling of the disability community’s voice and representation in government,” said Sen. Bob Casey, D-Pa., the ranking member of the U.S. Senate Special Committee on Aging and a lead signatory of the letter. “It’s insulting for the administration to make important decisions about key programs without input from the disability community.”

The title of one of Trump's ghostwritten books suggests his attitudes toward disability:

 Crippled America - How to Make America Great Again.jpg

Wednesday, March 14, 2018

Autism Legislation in Georgia: Score One for Evidence

The Politics of Autism includes an extensive discussion of insurance.

As Martha Derthick and Paul J. Quirk argued years ago in The Politics of Deregulation, strong evidence and arguments can actually change lawmaker's minds.

In Atlanta, Doug Richards reports at WXIA-TV:
The battle to expand insurance coverage for children with autism has been years in the making at Georgia's Capitol. It won a key victory three years ago – and another in Monday House insurance committee meeting – where chairman Rep. Richard Smith (R-Columbus) has spent years blocking autism legislation.
Smith had worried that adding mandated autism coverage would increase insurance costs. But Smith says he’s studied it further – and is now a believer in the autism bill. Currently, Georgia law requires some insurers to cover autism costs through age 6. This year’s Senate bill expanded it to age 12. Smith expanded it again to age 20.
Smith said his research showed that expanding coverage would cost policyholders less than 50 cents per month. "Fifty cents isn’t going to break anybody," Smith told 11Alive News after the vote.
"Today was a miraculous day," said Judith Ursitti of Autism Speaks, who added Chairman Smith’s conversion was quite unexpected.

Tuesday, March 13, 2018

NY Post Calls on Maloney to Apologize for Past Antivax Stand

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

An editorial in The New York Post:
Rep. Carolyn Maloney has finally seen the light about vaccines — sort of.
The Upper East Side/Queens congresswoman for years bought into the myth that vaccines can cause autism.
So it’s good that a Maloney spokesman on Sunday announced that she’s dropped the lunacy
“Congresswoman Maloney believes in the efficacy and safety of vaccines. She was at the forefront of efforts to protect funding for vaccines in the Affordable Care Act.”
Yet even after passage of the ACA, she compared — in congressional testimony — those who reject the supposed autism-vaccine link to those Big Tobacco apologists who denied that smoking causes cancer.
To be fair, that was partly because she has a heart, citing “verbal evidence coming from parents where they break down, [and say], ‘I had a normal child, I gave him a vaccination, and then they came down with autism.’ ”
But playing to that sentiment has led all too many parents to skip immunizations for their children — putting them and other kids at risk.
This, when medical experts long ago utterly debunked the connection: The Lancet, the journal that published the original study “proving” a vaccination-autism link, retracted it as utterly flawed back in 2010.
It’s a small win for science that Maloney’s admitting the truth. It’ll be a bigger one if she (and others who did the same) apologizes for promoting a deadly myth.

Monday, March 12, 2018

Antivax House Member Apparently Jumps Ship

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

At The New York Post, Carl Campanile reports that an antivax House member has apparently jumped ship.
A veteran congresswoman on Sunday backed away from her years of championing a discredited movement that claims vaccines cause autism.
A campaign spokesman for Rep. Carolyn Maloney [D-NY] said the congresswoman now “does not believe there is a link between vaccinations and autism.”
Congresswoman Maloney believes in the efficacy and safety of vaccines. She was at the forefront of efforts to protect funding for vaccines in the Affordable Care Act,” the rep said.
But for years, Maloney beat the drum for authorities to the study for any links between vaccines and autism — even saying the denials of a connection reminded her of people who dismissed tobacco smoking as a cause of cancer.

Sunday, March 11, 2018

Too Many Autistic People Die Young

In The Politics of Autism, I write:
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.
David Mandell writes at Autism:
People with autism think about killing themselves and die from suicide at a horrifying rate. Small studies find that 20%–40% of adults with autism have considered killing themselves (Hedley et al., 2017) and 15% report making at least one attempt (Balfe and Tantam, 2010). A large Swedish cohort study found that adults with autism are nine times more likely to die from suicide than other adults (Hirvikoski et al., 2016). Studies of children with autism find that 11% have suicidal ideation and 4%–7% have made suicide attempts (Mayes et al., 2013), and the risk of making a suicide attempt is six times that of other children (Moses, 2017).
As we think about the urgent task of reducing premature mortality in people with autism, it is worth revisiting some passages from the Autistica report that deserve as much public attention as those describing suicide risk. The risk of early mortality from all causes among people with autism is nearly twice that of the general population. Those with autism and no accompanying learning disability die an average of 16 years earlier. Those with autism and intellectual or learning disabilities die an average of 30 years earlier (Hirvikoski et al., 2016). The study by Hirvikoski and colleagues represents the largest and most careful study of mortality and autism to date. They found that 12% of deaths were due to suicide; 22% were due to diseases of the circulatory system, which include heart disease and stroke; and 12% were due to neoplasms, which include cancers. Diseases of the nervous system, which include epilepsy, accounted for 9% of deaths. These numbers vary greatly between individuals with and without intellectual disability. Suicides accounted for 14% of deaths in autistic adults without intellectual disability and 4% of deaths in those with intellectual disability. Death from nervous system diseases accounted for 4% of deaths in those without and 19% of those with intellectual disability.
By no means am I suggesting that we divert attention or resources from determining the best ways to reduce suicide risk in people with autism, but we must not lose sight of our primary goal, which should be to reduce all premature mortality and increase quality of life among people with autism. It would be a great service if future studies of mortality in autism provided attributable fractions, with the goal of directing public health efforts. Studies to date suggest that there is no single cause or even small set of causes that accounts for all the excess mortality in autism. Until we know exactly where to direct our efforts, improving primary and preventive care for people with autism (Nicolaidis and Raymaker, 2013), and addressing the healthcare needs that are common to all adults but exacerbated in adults with autism, may result in better outcomes than specialty programs that address one risk factor at a time.

Saturday, March 10, 2018

Special Ed Reform in CA: Unanticipated Consequences

 In The Politics of Autism, I write about IEPs and FAPE.  Some of the analysis involves California.

At EdSource, John Fensterwald offers a very clear example of how reforms create unanticipated consequences.
Students with disabilities are served by 133 regional agencies that administer special education services for member school districts. These agencies, known as Special Education Local Plan Agencies, or SELPAs, serve either multiple districts or a single large district.

Overall enrollment is declining in about half of the state’s school districts — but not special education enrollment, which results in many SELPAs receiving less state revenue for more students.

San Bernardino City Unified, which is large enough to have its own SELPA, illustrates the challenge. Jayne Christakos, chief business officer for the district, told legislators that at the same time that district enrollment dropped by 398 students, leading to a loss of $4 million in general funding and $210,000 in special education funding, the number of students identified with disabilities increased by 189 students. Many of those are autistic, requiring more money than the state provides.

The current system, adopted in 1998, switched to funding based on total enrollment to discourage districts that were suspected of over-identifying special education students and placing them in separate classes with more seriously disabled students — to get bigger reimbursements. The new process, which is funding based on enrollment, not specific disabilities, did simplify the process but no longer corresponds to need.

Friday, March 9, 2018

Myth about FDA Warning Lives On

 In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.  I also discuss the role of the Internet in spreading misinformation:
One problem is that a good deal of the solid research about autism lies in academic journals behind an Internet paywall, open only to people who have a university library card or can afford the journals’ exorbitant prices ($35 or more per article). Says neuroscientist Sophia Colamarino: “In today’s information age, where essentially anything said by anyone can be made accessible within a matter of moments, it is unfortunate that families have easy access to all BUT the most scientifically valid information, that which can be found in scientifically reviewed research literature.” NIH and Autism Speaks have tried to remedy this situation by requiring its research grant recipients to put any resulting peer-reviewed research papers on the PubMed Central online archive, but this policy affects only a fraction of the literature on autism.
Some health websites have misrepresented the fine print on an old vaccine label to falsely claim that the “FDA announced that vaccines are causing autism.” Vaccines do not cause autism and the U.S. Food and Drug Administration did not make any new statement this week about the long-debunked claim.
Autism was listed as one of many “adverse events” on the 2005 label of Sanofi Pasteur’s Tripedia childhood vaccine for diphtheria, tetanus and pertussis. When the vaccine was first approved, such reports were generated voluntarily by consumers and were automatically added to the FDA label, even if there was no plausible connection to the product.
The 2005 label notes that such reports do not “establish a causal relationship” to the vaccine. Since then, the FDA has changed its labeling rules and now only includes adverse events “for which there is some basis to believe there is a causal relationship,” the agency said in a statement.
Sanofi Pasteur stopped making the vaccine years ago, and its last shipment of it was in 2012.

Thursday, March 8, 2018

Antivax DA Goes Down in Texas

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

In Texas primaries this week, antivaccine forces failed miserably in an attempt to oust a GOP lawmaker.  They also lost a wacky DA.

Jasper Scherer at The San Antonio Express-News:
Bexar County District Attorney Nico LaHood, who gained national attention for his anti-Islamic comments and support of a debunked claim that vaccines cause autism, was decisively defeated after just a single term by Joe Gonzales, a one-time business associate.

Gonzales jumped into what became a bitter and divisive race after LaHood, in front of a judge, threatened to destroy his legal practice.

His race was aided by nearly $1 million in donations from liberal hedge fund magnate George Soros. LaHood struck back with lurid attack ads that claimed Soros “owned” Gonzales while deriding his commitment to not prosecute prostitution.
Brian Chasnoff at the same newspaper:
For many defectors, the breaking point came in the summer of 2016, when the DA appeared in a video, seated at his desk in his office, and declared, “I'm Nico LaHood. I'm the criminal district attorney in San Antonio, Texas. I'm here to tell you that vaccines can and do cause autism.”

Criticized for the statement, LaHood once again dodged responsibility, explaining it was his personal opinion based on his experiences as a father. Few actions by an elected official, though, could cause more harm to the public, particularly to children, who face a higher risk of contracting diseases in the absence of vaccines.

Nonetheless, in both 2014 and this year, LaHood ran on a platform of protecting children. This time, his actions spoke louder than words, and voters reacted in turn.

Wednesday, March 7, 2018

Antivaxxer Loses in Texas

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

Emma Platoff, Cassandra Pollock, and Edgar Walter report at The Texas Tribune on a statehouse race in which disgraced antivaccine doctor Andrew Wakefield backed a Republican candidate who also had the support of the state's governor.  They lost.
After Gov. Greg Abbott spent more than a quarter of a million dollars in a campaign to unseat three Republican incumbents in the Texas House, two of those incumbents nonetheless defeated their primary challengers Tuesday.
And state Rep. Sarah Davis, Abbott’s most explicit target, bested challenger Susanna Dokupil by more than 12 percentage points.
In a victory celebration, she thanked voters for re-electing her, telling them this primary race had significance far beyond her Harris County district.
“It was about whether the Republican party would be big enough to support diverse voices, and the right of a representative to vote her conscience and her district,” she said, framed by celebratory balloons.
Davis took several explicit shots at Abbott — who has called out her voting record in ways she has called disingenuous — as well as her opponent, who is backed by the anti-vaccine movement. Davis thanked her district for “supporting science and medicine — and vaccines,” to big applause.
"No amount of money in a campaign account can buy back your reputation when you squander it by making false accusations to exploit the suffering brought to us by the natural disaster that was Hurricane Harvey,” Davis said, in an apparent reference to Abbott’s claim that a Davis bill filed in 2017 might have undercut the state’s response to Harvey.
As Jonathan D. Quick and Heidi Larson write at Time, last week included a dubious milestone:
The vaccine-autism myth is one chilling example of fraudulent science. February 28, 2018 marks the 20th anniversary of an infamous article published in the prestigious medical journal, The Lancet, in which Andrew Wakefield, a former British doctor, falsely linked the MMR (measles, mumps and rubella) vaccine to autism. The paper eventually was retracted by the co-authors and the journal. Wakefield was de-licensed by medical authorities for his deceit and “callous disregard” for children in his care. It took nearly two decades for the UK immunization rates to recover. By the end, UK families had experienced more than 12,000 cases of measles, hundreds of hospitalizations — many with serious complications — and at least three deaths.

Tuesday, March 6, 2018

Midlife Social Outcomes

 Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:
A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.
Researchers are trying to fill this gap.

This paper describes the social functioning outcomes for 169 adults with autism spectrum disorders in mid-life. Adult participants spanned the full range of functional and cognitive ability levels, with over 75% functioning in the cognitively impaired range. While summary descriptions of outcomes for this sample were similar to those reported for other groups of adults, this report provides detailed information regarding employment outcomes, social relationships, leisure activities, participation in the community, residential situations, public service use, and involvement with law enforcement.
Among other things, the article finds that only 12% of the sample had a full-time unsupported daily occupation (including postsecondary education)  and another 12% had a part-time unsupported occupation.

Sunday, March 4, 2018

Trump Inspires Disability Activism

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

He is now inspiring disability activism.

Abigail Abrams at Time:
During his campaign, Trump promised not to touch entitlement programs. Since taking office, however, he and the GOP-controlled Congress have pursued an agenda that could have outsized consequences for disabled Americans. Each of the GOP’s proposals to repeal the Affordable Care Act included cuts to Medicaid, the main health insurer for adults and children with disabilities. Medicaid covers services that other insurers typically do not, such as personal care assistants and lifts that allow people with disabilities to live in their own homes and communities. While the ACA repeal attempts failed, the Trump administration has now allowed states to enact work requirements for those who receive Medicaid—a policy change that experts say will likely result in many disabled people losing coverage.

The backlash from the disabled community was fierce. Activists staged a “die-in” at Republican Senate Leader Mitch McConnell’s office last June, while members of ADAPT organized an average of three protests per day across 30 states over the summer, according to national organizer Gregg Beratan. The demonstrations helped grow the group’s ranks: at least 10 new chapters have emerged since Trump took office, according to ADAPT’s Cameron. Larger chapters, like the one in Denver where ADAPT started, have seen increases in membership and donations. Before the 2016 election, the Denver chapter typically raised about $10,000 each year. In 2017 they doubled that sum. The American Association of People with Disabilities launched a National Disability Voter Registration Week in 2016; last year the number of voter registration events rose nearly 400%. An estimated 45,000 people with disabilities attended the Women’s March on Washington last year, making that day likely the largest gathering of disabled people in American history. For those who could not go in person, an online Disability March drew more than 3,000 participants.

Saturday, March 3, 2018

National Autism Coordinator

In The Politics of Autism, I discuss the National Institutes of Health and the Inter-Agency Autism Coordinating Committee.

A press release from NIMH:
U.S. Department of Health and Human Services (HHS) Secretary Alex Azar has designated Ann E. Wagner, Ph.D., as the National Autism Coordinator. In this role, Dr. Wagner will play a vital role in ensuring the implementation of national autism spectrum disorder (ASD) research, services, and support activities across federal agencies. This role will complement the activities of the Interagency Autism Coordinating Committee, which includes public and federal members, takes place in a public forum, and focuses on sharing information about ongoing activities and providing advice to the Secretary of Health and Human Services on issues related to ASD.
Dr. Wagner is currently the Chief of the Biomarker and Intervention Development for Childhood-Onset Mental Disorders Branch in the Division of Translational Research at the National Institute of Mental Health (NIMH), part of the National Institutes of Health (NIH). In this role, she oversees the NIMH Autism Research Program, which supports a wide range of research on the characterization, pathophysiology, treatment, and outcomes of individuals with ASD and related neurodevelopmental disorders.
Dr. Wagner also serves as Chair of the NIH Autism Coordinating Committee, which coordinates autism-related research across several NIH Institutes and Centers and has jointly developed critical research initiatives, including the Autism Centers of Excellence and the Autism Biomarkers Consortium for Clinical Trials.
Dr. Wagner holds a Ph.D. in clinical psychology, with an emphasis in pediatric psychology, from Michigan State University. Prior to joining NIMH in 2001, she provided psychological services for children and adolescents, established and co-directed a diagnostic and treatment program for children with ASD and their families, and conducted clinical research and training at the Children’s National Medical Center/George Washington University Medical School in Washington, D.C.

Friday, March 2, 2018


In The Politics of Autism, I write:
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 The Conversation,  Chloe C. Hudson and Kate Harkness write:
Nearly half of adults with autism will experience clinical depression in their lifetime, according to our new research published in the Journal of Abnormal Child Psychology.
Depression can have devastating consequences for individuals with autism, including a loss of previously learned skills, greater difficulty carrying out everyday tasks, and at worst, suicide. People with autism should be regularly screened for depression so that they can access appropriate treatment.
Autism is a disorder that involves difficulties with social interactions and restricted repetitive patterns of behaviours. Autism also raises risk for severe mental illness.
Until now, researchers and clinicians did not know how many individuals with autism were affected by depression.
Our study, which involved a systematic review of nearly 8,000 research articles, now reveals clear evidence that depression is highly prevalent in both children and adults with autism. It also reveals that depression is more common in individuals with autism who have higher intelligence.

Thursday, March 1, 2018

Charter Schools

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

The National Center for Special Education in Charter Schools has a new report titled Key Trends in Special Education in Charter Schools: A Secondary Analysis of the Civil Rights Data Collection

  • [Among students with disabilities} charter schools report higher percentages of enrollment of students with specific learning disabilities—the largest category of students with disabilities served under IDEA (49.49% vs. 45.98%), autism (7.2% vs. 6.53%), and emotional disturbance(5.06% vs. 4.10%) compared to traditional public schools.
  • Most specialized schools (62.04%) have a focus on two or more IDEA categories. In terms of more specific disability categories,emotional disturbance (13.14%) and autism (10.95%) are the most represented 
These charter schools focus on autism:
  • Arizona Autism Charter Schools Phoenix AZ 
  • South Florida Autism Charter School Inc. Hialeah FL 
  • The Hope Charter Center for Autism Jensen Beach FL
  • Florida Autism Charter School of Excellence Tampa FL 
  • Renaissance Learning Academy West Palm Beach FL 
  • Palm Beach School for Autism Lake Worth FL 
  • Princeton House Charter Orlando FL 
  • Renaissance Learning Center West Palm Beach FL
  • Margaret Brent Regional Center New Carrollton MD 
  • Lionsgate Academy Crystal MN 
  • Broome Street Academy Charter HighSchool Orange NY 
  • New York Center for Autism Charter School New York NY
  • The Autism Academy of Learning Toledo OH 
  • Autism Model School Toledo OH 
  • The Foundation School for Autism San Antonio TX