Latest "Breakthrough"

In The Politics of Autism, I discuss various ideas about what causes the condition and how to treat it.  I also write:  "If the science were not confusing enough, its coverage in the mass media has added another layer of murk.  News reports hype tentative findings and weak correlations as “breakthroughs” in the quest for autism answers. "

From The Daily Mail:

Autism breakthrough: New drug may 'turn down' enzyme that hijacks social behavior in people on the spectrum

A treatment for adults on the autism spectrum may be in sight, thanks to a new discovery.

After decades of research, scientists at Florida Atlantic University (FA) have discovered a new pathway in the brain linked to behavioral symptoms of autism - and a drug that may quell them.

Some autism advocates have increasingly been pushing for people on the spectrum to not be treated as 'disordered,' but rather as simply different.

On the other hand, the FAU researchers note that autism also frequently comes with physiological problems - particularly for the gut.

There are currently no treatments for autism in adults, but the team discovered a drug treated the behavioral 'disruptions' in mice genetically engineered to have autism, suggesting it might do the same for people on the spectrum.

Vaccine Hesitancy

In The Politics of Autism, I look at the discredited notion that vaccines cause autism..

At The Journal of the Pediatric Infectious Diseases Society, Gary S. Marshall has an article titled "Vaccine Hesitancy, History, and Human Nature: The 2018 Stanley A. Plotkin Lecture."

To understand vaccine hesitancy, we need to understand how parents and providers navigate from the facts as they exist to a vaccination decision, a path that is influenced by surrounding culture (Figure 2). The Internet, and especially Web 2.0, are starting points for many: we cannot ignore these accessible sources of information and misinformation. One must assume that by now virtually all parents have heard that vaccines cause autism. How would this “fact” play out on Vulcan (Spock’s planet of origin, where logic is venerated and emotion vilified)? Parents would view the data through a probabilistic lens and conclude that the purported link is extremely unlikely. On Earth—where antiscience, fake news, and “alternative” facts have free reign—many people cannot differentiate the misinformation mash-up from scientific consensus. (Are there Vulcans who would see glaciers disappear before their eyes and deny that their planet was warming?) Science is under attack, and science agencies are degenerating. It is difficult to refute the fact that vaccines cause autism for parents who sense that (mainstream) science is not always right.

The final arbiter of decisions for Earthlings is, of course, the human mind—a computer that retains ancient algorithms that were responsible for its evolutionary success . One hears about a particular outcome (autism) in an exposed (vaccinated) person, and that is where the thinking stops: the association is confirmed. (Actually, the thinking never starts—our tendency to form snap judgments is innate, and we instinctually err on the side of false positives.) The end result: One case of autism in a vaccinated child is enough for me. No vaccines! Parents who think that vaccines can have serious side effects (Figure 2) are, technically, correct (Table 2).

Parents who color their interpretation of this fact through the they can’t prove vaccines are safe lens are also, technically, correct—science cannot rule out associations between vaccination and adverse events with absolute certainty. However, this is not a failure—it is the way science works. Science seeks evidence to reject or fail to reject the null hypothesis—that being, for example, vaccines do not cause autism. In failing to reject this null hypothesis, we run the risk of making an error (believing that vaccines do not cause autism when, in fact, they do). Our chances of making that error may be very, very small, but they cannot be zero (unless we test every single person who ever did or did not receive a vaccine, which is, well, every single person). This is a difficult concept for people to understand, especially those educated in the United States, a country where math and science education may soon qualify for life support.

A Troubled Provider

The Politics of Autism includes an extensive discussion of autism service providers.

Elisha Anderson and John Wisely at The Detroit Free Press:

Macomb County plans to cut ties with Michigan’s largest autism therapy provider, Centria Healthcare, after a slew of problems including an employee caught on video abusing an autistic child.

The decision follows a similar move by Lapeer County last year, which dumped Centria amid mounting frustrations with the company. Centria said it was told Lapeer wanted a cheaper provider but documents obtained by the Free Press show broader problems in both counties.

In Macomb, community mental health officials cited Centria repeatedly for things like patient care, billing and training issues. Last year, it placed the company on probation.

Then after a video showed a Centria employee taunting, dragging, pushing and swatting a 5-year-old autistic girl during a therapy session in March, the county decided to part ways. The transition to new providers is expected to be completed by the end of the year.

Nearly a year ago, the Free Press began examining thousands of internal and public documents related to Centria and interviewed former executives and employees who claimed the business has engaged in billing fraud, violating patient privacy, forgery, falsifying reports and employing unqualified people in an effort to boost profits.

Centria denies any wrongdoing and sued three former employees for defamation. That case is pending in Oakland County

Special Education in New York City

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

Elizabeth A. Harris at NYT:

By the Education Department’s own accounting, more than 25 percent of students with disabilities, or nearly 50,000, did not receive the kind of specialized instruction to which they were legally entitled to in the 2016-17 school year, the most recent year for which that information was available. That was actually better than the year before, when more than 40 percent of students with disabilities did not receive their mandated instruction.

In many cases, the city doesn’t even know in real time if children are getting what they need because the computer system designed to keep track of interventions, which has cost the city at least $130 million, has been riddled with technical glitches and systemic problems since it was instituted in 2011.

While the graduation rate for all students has improved significantly in recent years, just 43.4 percent of students with disabilities finished high school on time in 2017, nearly 30 percentage points lower than the citywide rate. Nearly half of those graduates with disabilities received what’s called a local diploma, with requirements that are less rigorous than the norm.

Will Mantell, a spokesman for the department of education, said the city has made changes to improve special education by hiring more staff, and enhancing training and data tracking. “We’ve made real progress,” Mr. Mantell said. “We know there’s more work to do, and this is a focus area for the chancellor and the D.O.E.”

In the meantime, for students across the spectrum of disability, navigating the system can be a draining battle. “We find that families of students with a range of needs struggle to get the evaluations and services that their children need,” said Randi Levine, policy director of Advocates for Children of New York, which often intervenes with the Education Department on behalf of families. “We hear from families whose children only need speech therapy who are having difficulty getting it. And we hear from families whose students have autism and a range of complex needs who are having difficulty getting the classes and services their child needs.”

Benefits of Minimizing Restraint and Seclusion

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

A release from Ukeru:

A new longitudinal study, just released in the journal Advances in Neurodevelopmental Disorders, illustrates one behavioral healthcare facility’s ability to dramatically reduce physical restraint and completely eliminate seclusion by shifting to an approach of comfort versus control. The article, “Evaluation of a Program Model for Minimizing Restraint and Seclusion,” follows the sharp decline of the use of restraint and seclusion from 2004 – 2016 at Grafton Integrated Health Network, a Virginia-based facility that serves at-risk and high-risk clients (both children and adults) with intellectual, developmental, and psychiatric disabilities.

The study evaluated all of Grafton’s organizational operations, which included more than 750 employees and 3,244 clients in 2016. In the year before the program began (2003), there were 6,646 incidents of restraint and seclusion.

“We knew there had to be a better way,” said Kim Sanders, co-author of the study and Executive Vice President of Grafton. “Not only were these techniques harmful to both our clients and our staff, they simply didn’t work. In fact, consistent with the data, we saw that using restraint and seclusion was just reinforcing and maintaining aggression and violence. We decided to create a new model for addressing challenging behavior which was grounded in respect for all involved.”

A comfort versus control mindset was introduced as part of a trauma-informed approach. This method minimizes the chance for everyday operations to traumatize or re-traumatize clients during service delivery. The Grafton philosophy taught response blocking, promoted an understanding of behavioral intent and client needs, and encouraged the development of creative solutions as meaningful alternatives to restraint and seclusion. This cultural shift asked employees to reassure clients, ask questions instead of making assumptions, be flexible, let go of the need to have the “upper hand,” and treat others with kindness and compassion.

The results were dramatic:

• A 99% decrease in restraint frequency
• A 100% reduction seclusion (from 253 cases in 2003 to 0 in 2015 and 2016)
• A 97% decrease in staff injury from a restraint
• A 64% decrease in client-induced staff injury
• An increase in client goal mastery 133% from 2003 to 2016
• A savings of over $16 million in lost time expenses, turnover costs, and workers’ compensation policy costs

“This model of care not only has an impact on restraint and seclusion incident rates but has created a profound culture shift across the entire organization,” said James Stewart, Grafton’s Chief Executive Officer. “Our approach is rooted in the belief that the use of physical restraints is not only unnecessary, but also unproductive and that all intervention — educational and behavioral — should be built on an approach of comfort versus control.”

Now, through its Ukeru Systems division, Grafton has trained more than 100 other organizations on the conceptual and technical elements of the program. Ukeru provides support and capacity building to caregivers, teachers, parents and others, helping them to implement the model in their own environment.

“Our system shows that you can eliminate the use of restraint and seclusion without compromising safety, as long as caregivers are properly trained,” said Sanders, who is also the President of Ukeru. “Ultimately, it is about receiving, engaging, sensing, feeling and responding to what someone is trying to communicate to us through their actions while maintaining the safety of all those involved.”

ESSA Is Often Falling Short for Students with Disabilities

In The Politics of Autism, I write about special education and federal legislation.

From the National Center for Learning Disabilities:

NCLD is proud to announce the release of Assessing ESSA: Missed Opportunities for Students with Disabilities. This new report provides the first national analysis of how state plans include and serve students with disabilities under the Every Student Succeeds Act (ESSA), the nation’s new K-12 education law.

NCLD is committed to improving outcomes for students with disabilities, and we believe that through ESSA, states have an obligation and critical opportunity to make sure that our students are front and center in discussions about achievement, equity, school quality, accountability and improvement. States can do more to take advantage of this opportunity, and therefore must reflect on their progress and strive to make improvements in how they serve all learners.

The report rates each state’s, the District of Columbia’s and Puerto Rico’s ESSA plan on three key areas:

• Holding Districts and Schools Accountable
• Helping Struggling Schools
• Collaborating to Support All Schools

The results of the ESSA analysis are troubling. Groups of students, including students with disabilities, low-income students and students learning English, are frequently neglected. For example:

• 33 states do not include the academic performance of specific groups of students, like those with disabilities, in their school rating systems.
• Only 18 states set the same long-term goals for students with disabilities as students without disabilities.
• Roughly half of states don’t provide a detailed description of how they will work with their existing special education plans to improve outcomes for students with disabilities.

The bottom line: Most states need to do more.

Check out how your state scored in each rating area and read the full report at NCLD.org/AssessingESSA.

Medi-Cal and Behavioral Health Treatment

In The Politics of Autism, I discuss state Medicaid services for people with intellectual and developmental disabilities

A release from CARD:

Center for Autism and Related Disorders (CARD) welcomes the announcement from the State of California's Department of Health Care Services (DHCS) that Medi-Cal will cover behavioral health treatment, including applied behavior analysis (ABA), regardless of an eligible beneficiary's diagnosis. Earlier this year, DHCS announced that Medi-Cal enrollees under 21 whose diagnosis may benefit from ABA, as determined by a physician or psychologist, have access to behavioral health treatment.

"ABA has been shown to be effective in the treatment of many diagnoses, such as substance use disorder, Down Syndrome, and eating disorders, to name a few," said Michelle LaBruzzi, MA, BCBA. "We are looking forward to expanding the families we can help in addition to those in the autism community."

...

"We are happy to see California take the lead in expanding access to applied behavior analysis for our Medi-Cal community," said Doreen Granpeesheh, PhD, BCBA-D, founder of CARD.

In addition to traditional 1:1 intensive ABA programs, CARD offers focused ABA programs and several targeted programs, including feeding, pill swallowing, social skills groups, short and long-term treatment of severe problem behavior, and more focused parent training. Parents and caregivers are encouraged to participate in parent/caregiver training, which is available during non-traditional work hours and online

Big Funding Deal

The Politics of Autism discusses legislation before Congress.

From Autism Speaks:

Autism Speaks advocates for appropriations to ensure federal agencies that run programs for autism research, services, and supports are appropriately funded.

Twelve appropriations bills, which provide funding for the federal government in the next fiscal year, must pass each year. These bills must be enacted by October 1, or the government shuts down due to lack of funding.

Last week, an appropriations “minibus” was enacted that includes the funding bills for the Department of Defense, and the Departments of Labor, Health and Human Services, and Education for Fiscal Year 2019.

This is the first time the Labor-HHS-Education appropriations bill has been completed before October 1, the start of the new fiscal year, since 1999.

This spending package includes wins for autism research and services, including

• $2 billion increase for the National Institutes of Health (NIH). NIH’s funding increase is particularly important in achieving the goal set by the Interagency Autism Coordinating Committee (IACC) to double the autism research budget by 2020.

• $150 million increase for the National Institute of Mental Health (NIMH), with $57.5 million NIMH funds designated for the BRAIN initiative.

• $23.1 million for autism activities at the Centers for Disease Control and Prevention (CDC). CDC’s work includes providing essential data on autism spectrum disorder (ASD), searching for risk factors and possible causes, and developing resources to help identify children as early as possible.

• $1.5 million increase to the Health Resources & Services Administration (HRSA) for autism activities, with $33.5 million of HRSA funds designated for LEND.

• $7.5 million for the Autism Research Program at the Department of Defense. Since its inception in Fiscal Year 2007, close to $100 million has been directed to promote innovative research designed to advance the understanding of ASD and to improve the lives of those living with autism. 

• $12.4 billion for IDEA special education, an $87 million increase over last year.

These funding increases and focus on autism-specific programs keep us on a path toward new autism discoveries and supports.

We owe a special thanks to Representatives Chris Smith (R-NJ) and Mike Doyle (D-PA)who led the effort for these programs in the House of Representatives, and Senators Amy Klobuchar (D-MN) and Thom Tills (R-NC) who led the effort in the Senate.

In Autism Intervention, Cheap Does Not Always Mean Good

In The Politics of Autism, I discuss costs and benefits of autism services.

At Autism, Giacomo Vivanti, Aubyn Stahmer have an article titled "Early Intervention for Sutism: Are We prioritizing Feasibility at the Expenses of Effectiveness? A Cautionary Note."

In the ASD early intervention field, the concept of sustainability is frequently—and mistakenly—equated with affordability, which refers to the initial costs of training providers and ongoing costs of implementing an evidence-based intervention. Accordingly, while factors promoting sustainment of interventions are under-researched, there is an increasing trend toward reducing intervention costs to make interventions more feasible for use in the community. In ASD, this is often accomplished by decreasing the intensity of an intervention or by lowering specialization standards or training requirements for those delivering the intervention. Three phenomena illustrate this trend: (1) the growing emphasis on low-intensity, parent-mediated early interventions (both in terms of publicly funded programs and new interventions being developed and tested; Nevill et al., 2018); (2) the increased reliance on paraprofessionals with minimal training or supervision to deliver interventions (e.g. behavior technicians who receive 1 week of training overall; Leaf et al., 2017); and, perhaps as a result of (1) and (2), (3) poor adherence to evidence-based practice protocol as providers adapt methods for their own context (Stahmer et al., 2005).

In short, it's the Iron Triangle of health care policy:  cost, access, quality.   One cannot maximize all three at the same time. There are always tradeoffs.

Tracking Devices: a Success Story

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

WTEN-TV reports that Project Lifesaver helped save a boy in Upstate New York

Saratoga County Sheriff's deputies say around 1 p.m. Saturday afternoon a 9-year-old boy living with Autism was reported missing.

Fortunately, the child is a member of the Sheriff’s Project Lifesaver Program and wears a transmitter bracelet.

Officers searched for about an hour before successfully tracking him down.

Program participants wear a transmitter bracelet which the Sheriff’s Office uses to locate the individual if they were to wander. In most cases, there is little to no cost to participates in the program.

If you have a family member with Autism, Alzheimer’s or any other condition and you are concerned that they may wander, please contact the Saratoga County Sheriff's Office to find out more about the program at (518)944-6288 email jlang@saratogacountyny.gov.

Antivaxxers and Fake News

In The Politics of Autism, I look at the discredited notion that vaccines cause autism..

This bogus idea has had an impact in Italy. Writes Francesca De Benedetti at The Independent:

“What Italy is seeing is not a vague sentiment, or parents' response to some abstract concern about vaccines. It's the product of real people and specific facts,” says British journalist Brian Deer.

“This is principally the achievement of the disgraced former British doctor Andrew Wakefield, and a group of enablers who work with him, aiming to destabilise public confidence in vaccines.

“Embittered after he was caught falsifying vaccine research, he can do this because of the opportunities provided by social media.”

Mr Deer has become the unofficial debunker of the claims of anti-vaxxers. Twenty years ago, Wakefield published a study in The Lancet suggesting an association between the MMR (measles-mumps-rubella) vaccine and autism and gastrointestinal diseases.

This paper is at the origins of parents’ growing scepticism towards vaccination – but Mr Deer showed that Wakefield had manipulated evidence and had a conflict of interest. As The Lancet itself had to admit, the study was “fake news” long before the term was popular.

Nevertheless, the fake news continues to be spread online, and public confidence in vaccinations continues to drop, and, as Mr Deer points out, the result is polarisation.As was the case with Donald Trump – who tweeted and claimed that vaccines and autism are linked – at first Italian populists rode the wave of anti-vaccine sentiment in their election campaigns.

Trouble for Special Ed in Puerto Rico

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

At Bloomberg, John O'Neil  and Michael Elsen-Rooney report that Hurricane Maria worsened an already-bad situation for special education in Puerto Rico.  Many people are leaving the island, and schools are closing.

Puerto Rico has been operating under a court order to improve special education for 37 years. As of last year, 33.4 percent of public school students in the commonwealth are enrolled in such programs, compared with a national average of 13 percent in 2015, the last year for which there are figures. But while more numerous, Puerto Rico’s special education students fare far worse. Some 93 percent of them scored below the basic level on the National Assessment of Educational Progress test—nationally, that figure was 51 percent.

...
[Puerto Rico's education secretary Julia] Keleher said Puerto Rico’s special education program produces “terrible” results. Almost four decades ago, a judge made a similar observation in a ruling that the commonwealth had failed to meet its constitutional obligations to disabled students.

When the lawsuit was filed in 1980, only 3.9 percent of Puerto Rico’s students were classified as eligible for special education, compared with a national average of around 10 percent at the time. Keleher credits the lawsuit, begun just five years after she was born, with having forced the department to identify more students with disabilities. But she added that the current percentage of students designated as needing special education, more than eight times that of 1980, is “off the rails.”

Pressure from the lawsuit may have led educators to over-enroll, she said. Students were classified as being suitable for special education without sufficient screening. It was an impulse to err “on the side of, ‘Let me just help you, because we don’t want to be accused of not helping,’ ” Keleher said.

 There are other theories. Joyce Davila, the founder of Puerto Rico’s Autism Alliance, thinks the current 33 percent figure may be accurate—reflecting the high level of disability that stems from the island’s poverty. Susan Therriault, a managing researcher with the American Institutes of Research who has worked in Puerto Rico, said the high percentage may reflect the large number of students enrolled in private schools, some of which she claimed have a reputation for being reluctant to admit students with disabilities. As a result, an artificially large contingent of kids with special needs are left in public schools.

ASAN Opposes the Proposed "Public Charge" Regulation

In The Politics of Autism, I explain how the issue connects with so many other issues.  Immigration is an example.

From ASAN:

The Autistic Self Advocacy Network strongly condemns the Administration’s proposed “Public Charge” regulation, which discriminates against disabled and low-income immigrants and makes pathways to American citizenship contingent upon wealth and the absence of disability.

“Public charge” clauses have existed in US immigration law since 1882 and are a clear echo of the racist and ableist policies of the eugenics era. Immigrants deemed likely to become a “public charge” are unable to enter the United States or, if already present, apply for green cards in order to remain as permanent residents. Right now, only immigrants who are receiving cash assistance (such as Temporary Assistance for Needy Families) or who are institutionalized are considered likely to become a “public charge.” Rather than reversing this legacy of discrimination, the Trump Administration has doubled down and proposed making these regulations exponentially worse.

Under the proposed regulations, receiving or even being likely to receive almost any form of public benefit — such as Medicaid, Section 8 housing assistance, Medicare Part D, and SNAP — could make someone “likely to become a public charge.” These provisions would effectively exclude all low-income immigrants and many immigrants with disabilities, who are disproportionately more likely to be low-income or utilize social services. The proposed regulations also consider counting Children’s Health Insurance Program benefits, a cold-hearted move that would harm many low-income immigrant families. Community organizations are already reporting that these proposed regulations are discouraging immigrant families from applying for benefits they or their family members, including US-citizen children, are legally entitled to receive, negatively impacting their health, wellbeing, and quality of life.

The proposed regulations also explicitly discriminate against people with disabilities. The proposed rule singles out people with medical conditions that require “extensive medical treatment or institutionalization” and/or impact the person’s ability to work — in other words, people with disabilities — and says this can be counted against them during a public charge determination. This provision is unambiguously ableist and discounts the many contributions made by Americans with disabilities. Disabled immigrants who need health care they can’t pay for on their own will be caught in a catch-22: either they can use public benefits such as Medicaid, and be penalized for using public benefits as well asfor having a medical condition; or they can forgo necessary medical care and still be penalized for having a medical condition.

Disability or a need for supports and services should never impact someone’s immigration status. Immigrants, including low-income and disabled immigrants, are a vital part of our society. ASAN calls for the immediate dismissal of this immoral and indefensible proposed regulation. For more information on ASAN’s positions with respect to the proposed rule, contact Samantha Crane, our Director of Legal and Public Policy, at scrane@autisticadvocacy.org.