Project Lifesaver

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

An autistic teen from Waterford, New York, went missing this week and apparently drowned in the Mohawk River.

Bethany Bump at The Times-Union in Albany:

The search for both Blaauboer and Williams could have been over in hours, if not minutes, if the two had been enrolled in the Project Lifesaver program, officials have suggested.

Developed in 1999 as a way to bring peace of mind to caregivers of individuals with cognitive disorders such as autism, Alzheimer's and other dementias, those enrolled in the program wear a small transmitter on the wrist or ankle that emits an individualized frequency signal. If they go missing, the caregiver notifies local law enforcement, who can use the technology to pinpoint their location.

There are similar technologies with other names, but Project Lifesaver was one of the first and is used by the majority of county sheriff's offices around the region.

"Thinking about my 16-year-old son Michael who lives with autism, I know how children with autism can tend to wander," said Assemblyman Angelo Santabarbara, who helped bring the program to his home county of Schenectady in 2015.

"It's critical that we invest in this life-saving technology to protect our most vulnerable citizens," he said.

Santabarbara introduced a bill in April to expand the technology statewide to those who need it. In addition to the technology, law enforcement agencies need training in how to use the program, he said.

Career and Technical Education

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

From Autism Speaks:

The Carl D. Perkins Career and Technical Education Act was reauthorized on July 31, 2018. This law increases access to employment opportunities for people with autism and other disabilities.

Perkins-funded CTE programs provide the skills training and experience that are critical for guiding youth through the transition out of secondary school into employment or continued education.

Approximately 500,000 youth with autism will enter adulthood over the next 10 years. Over one-third of young adults with autism never get a job or continue education after high school.

Perkins helps students with disabilities secure employment after graduation by integrating youth into the labor market early. It supports cooperative education which combines academic study and career and technical education (CTE) with work experience in a related field.

The reauthorization of Perkins CTE supports a well prepared, community-led, inclusive workforce by encouraging

• Proven CTE programs, practices, and strategies
• A broad CTE framework more closely aligned with the Workforce Innovation Opportunity Act
• Community involvement by connecting local job markets to local schools
• Workplace-based training
• Relationships between individuals on the spectrum and potential employers
• Improved accountability and performance indicators

The Strengthening Career and Technical Education for the 21st Century Act was originally passed by the U.S. House of Representatives in June 2017. The U.S. Senate amended the bill and passed the legislation on July 23, 2018. The House adopted the Senate's language and passed the bill on July 25. The president signed it into law on July 31.

Autism Speaks served as a primary stakeholder on Perkins CTE reauthorization. We worked across the aisle with party leadership of the Senate HELP and House Education and Workforce committees. We also provided assistance to our legislative champions, Representatives Thompson and Krishnamoorthi and Senators Enzi and Casey. We are prepared to assist with the implementation of the new law going forward.

Antivax Victory in Italy

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

Health system in #Italy has taken a dark turn from a govt promoting phony "medical freedom" & "choice" over the rights of children to be protected against deadly diseases. Similar pseudo-populism now in western #USA states including TX OR WA ID UT AR @CNN https://t.co/82nL2yy8Yz

— Prof Peter Hotez MD PhD (@PeterHotez) August 8, 2018

Gianluca Mezzofiore at CNN:

An amendment from Italy's anti-establishment government that removes mandatory vaccination for schoolchildren is sending shock waves through the country's scientific and medical community.

It suspends for a year a law that requires parents to provide proof of 10 routine vaccinations when enrolling their children in nurseries or preschools. The amendment was approved by Italy's upper house of parliament on Friday by 148 to 110 votes and still has to pass the lower house.

The law had originally been introduced by the Democratic Party in July 2017 amid an ongoing outbreak of measles that saw 5,004 cases reported in 2017 -- the second-highest figure in Europe after Romania -- according to the European Centre for Disease Prevention and Control (ECDC). Italy accounted for 34% of all measles cases reported by countries in the European Economic Area, the center said.

At Time, Ciara Nugent and Jamie Ducharme report:

The anti-vax vote is significant in Italy, with widespread distrust of vaccinations dating back to a later debunked and retracted 1998 study that claimed to show a link between the measles, mumps and rubella (MMR) vaccine and autism. As late as 2012, a court in Italy ruled that a child’s autism had been caused by the MMR vaccine, fueling the anti-vaccination movement. That ruling was overturned in 2015, but its effect seems to linger: A 2017 study of Italian internet habits between 2010 and 2015 found a connection between search and social media activity around the MMR vaccine and lower vaccination rates.

After the Five Star Movement and the League formed a coalition government in May, Interior Minister Matteo Salvini said that the 10 mandatory vaccines were “useless and in many cases dangerous, if not harmful.”

Health Minister Giulia Grillo says requiring 10 vaccines threatens “school inclusion” and that the government want to “simplify rules for parents.”

Texas Antivax Hotpsots

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

At The Dallas Morning News, Eva-Marie Ayala and Nanette Light report on antivax hotspots in Texas:

"It's so frustrating because I can see this train coming two miles down the tracks," said Dr. Peter Hotez, director of the Texas Children's Hospital Center for Vaccine Development and dean of the National School of Tropical Medicine at Baylor College of Medicine in Houston. "And I can't do much to stop it other than just try to talk about vaccines, why they're safe, why the evidence shows there's clearly no link between vaccines and autism."

...

Hotez’s research has showed big clusters of exemptions in the western part of the country and in pockets where parents have slightly more wealth and education. His study showed Texas had the most “hot spots” of kindergartners whose parents, for nonmedical reasons, kept them from getting vaccinations against diseases such as measles, mumps, chicken pox and whooping cough.

Texas is among 18 states that let families opt out of vaccines for personal or moral beliefs, according to the National Conference of State Legislatures. And Plano, Fort Worth, Austin and Houston all ranked among the 15 U.S. metro areas with the most such conscientious exemptions for kindergartners. Each had more than 400 kindergartners exempted from vaccines.

Conscientious objections have risen steadily in the state over the past five years and now top 1 percent for the first time in recent years. Texas reported that 56,738 students — from kindergarten to 12th grade — opted out last school year. That’s an increase of almost 4,000 students from the previous year, according to the Texas Department of Health and Human Services.

Hotez, who is the father of an autistic daughter, is most concerned about how exemption hot spots can put more people at risk for outbreaks of childhood infections. He said people tend to look at national and statewide rates and say, "They're not that alarming."

But those numbers, he said, “mask pockets in these schools.”

IVF

In The Politics of Autism, I 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. When the research yields mixed results, the media headlines can be comically inconsistent. Consider how various publications covered a 2013 study on the impact of in vitro fertilization:

• RARE IN VITRO TECHNIQUE RAISES AUTISM RISK, STUDY SAYS
• IVF PROCEDURES DO NOT BOOST AUTISM RISK
• SOME FORMS OF IVF LINKED TO AUTISM, MENTAL DISABILITY
• IVF, AUTISM NOT LINKED, BUT STUDY FINDS RISK OF INTELLECTUAL DISABILITY[i]

[i] John J. Pitney, Jr., “IVF, Autism, and Headlines,” Autism Policy and Politics, July 2, 2013. Online: http://www.autismpolicyblog.com/2013/07/ivf-autism-and-headlines.html; “Autism and IVF: More Contradictory Headlines,” Autism Policy and Politics, July 3, 2013. Online: http://www.autismpolicyblog.com/2013/07/autism-and-ivf-more-contradictory.html

Now a headline at Xinhua:  SOME FERTILITY TREATMENTS CAN CAUSE AUTISM: ISRAELI RESEARCH

 Fertility treatments may increase the risk of autism in children, according to a research published by the University of Haifa in northern Israel Sunday.

In recent years, efforts have been made to identify the environmental factors that influence the development of autism. One of the directions that has not been thoroughly tested is the effect of fertility treatments.

Today there is a scientific and medical controversy. Some studies have found that there is no connection between fertility treatments and autism, especially IVF (In vitro fertilisation) treatments. Other studies have linked to individual hormones and autism.
The new study, which also included researchers from Mount Sinai Hospital in New York and the Karolinska Institute in Sweden, included 108,548 boys, as boys have a higher risk of developing autism than girls.

In the case of progesterone hormone therapy, it was found that the odds of having a child on the autistic spectrum were 1.5 times higher than those who did not undergo fertility treatments.

Among other things, beware the word cause the headline.  As every social scientist knows, correlation is not the same as causation.

Autism and Employment: The Research

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

Melissa Scott and colleagues have an article at Autism titled "Factors Impacting Employment for People with Autism Spectrum Disorder: A Scoping Review."

The lay abstract:

Adults with Autism Spectrum Disorder (ASD) possess unique strengths and abilities. Despite increasing recognition of the potential contribution that individuals with ASD can make in the workplace, they continue to experience challenges in finding and maintaining a job. This review examined the factors relating to the employment of individuals with ASD. Database searches were conducted. Studies describing adults with ASD employed in competitive, supported or sheltered employment were included. A technique called content analysis was used to identify the strengths and abilities in the workplace of employees with ASD. Lastly, meaningful concepts relating to employment interventions were linked to the International Classification of Functioning, Disability and Health (ICF) Cores Sets for ASD (these are a way of categorising and describing how individuals with ASD function across the lifespan). The search identified 134 studies for inclusion. Of these studies, only 14 explored the strengths and abilities of individuals with ASD in the workplace including attention to detail, high quality of work and a strong sense of morality. Thirty-six studies evaluated employment interventions for adults with ASD, with a focus on modifying ASD characteristics for improved job performance, with little consideration of the impact of environmental factors on work participation. The ICF Core Sets for ASD were found to be a useful tool in holistically examining the employment literature. This review highlighted the key role that environmental factors play as barriers and facilitators in the employment of people with ASD and the critical need for interventions to target both personal and environmental factors if employment outcomes are to be improved.

From the article:

To date, ASD research has largely focussed on diagnosis and early intervention services for children, and as confirmed by the findings of the current review, a paucity of literature has focussed on examining the relative effectiveness of interventions in adulthood (Hedley et al., 2016; Howlin et al., 2015; Schall et al., 2015). Of the 134 employment studies identified for inclusion in this review, only 36 were intervention based. While these interventions studies had the stated collective purpose of improving employment outcomes, they were primarily impairment-focussed, targeting their interventions at intrinsic individual ASD characteristics, with little consideration of contextual influences. Interventions targeted ASD traits commonly associated with difficulties in finding and obtaining a job, such as executive functioning skills in relation to problem-solving, organisation, task management and behaviour regulation and social-communication skills required in interviews and workplace interactions (American Psychiatric Association, 2013; Hendricks, 2010; Müller et al., 2003). While many of these interventions were effective in increasing measured vocational and executive functioning skills, many participants continued to remain unemployed. The continuing high rates of unemployment among participants following these interventions suggest that impairment-focussed interventions alone are not sufficient in achieving and maintaining successful work-related outcomes for individuals with ASD (Ellenkamp et al., 2016). 

• American Psychiatric Association (2013) Diagnostic andStatistical Manual of Mental Disorders. 5th ed. Text revision.Arlington, VA: American Psychiatric Publishing.
• Ellenkamp J, Brouwers E, Embregts P, et al. (2016) Work environment-relatedf actors in obtaining and maintaining work in a competitive employment setting for employees with intellectual disabilities: a systematic review. Journal ofOccupational Rehabilitation 26: 56–69
• Hedley D, Uljarevic M, Cameron L, et al. (2016) Employment programmes and interventions targeting adults with autismspectrum disorder: a systematic review. Autism 1: 13. 
• Hendricks D (2010) Employment and adults with autism spectrum disorders: challenges and strategies for success.Journal of Vocational Rehabilitation 32: 125–134.
• Howlin P, Arciuli J, Begeer S, et al. (2015) Research on adults with autism spectrum disorder: roundtable report. Journalof Intellectual & Developmental Disability 40: 388–393.
• Müller E, Schuler A, Burton BA, et al. (2003) Meeting the vocational support needs of individuals with Asperger syndrome and other autsim spectrum disabilities. Journal of Vocational Rehabilitation 18: 163–175.
• Schall CM, Wehman P, Brooke V, et al. (2015) Employment interventions for individuals with ASD: the relative efficacy of supported employment with or without prior project SEARCH training. Journal of Autism and Developmental Disorders 45: 3990–4001

Disparities in Disability Employment

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

Martha Ross and Nicole Bateman at Brookings:

Employment rates among prime-aged adults with disabilities in the 100 largest metropolitan areas range from 28 percent to 60 percent (Map 1). Workers and would-be workers with disabilities fare better in places where higher shares of the overall working-age population are employed. Such places include Madison, Wis.; Minneapolis-St. Paul, Minn.; Washington, D.C.; Denver, Colo.; Austin, Texas; Wichita, Kan.; Omaha, Neb.; and Boise, Idaho.

Nonetheless, even in places with high employment rates among people with disabilities, the gap relative to the population as a whole is huge, anywhere from 20 to 35 percentage points. For example, in Minneapolis-St. Paul, the employment rate among adults with disabilities is 51 percent, compared to 87 percent among all adults. In fact, the highest employment rate among people with disabilities (60 percent in Madison, Wis.) is still below the rate for all working-age adults in Bakersfield, Calif. (70 percent), the region with the lowest employment rate among the 100 largest metro areas.

Employment rates also vary by race, ethnicity, and education level.

Employment gaps of the magnitude described above stem from multiple sources. Federal disability policy emphasizes income support and disincentives employment, with only an estimated 1 percent of federal and state expenditures on working-age people with disabilities going to education, training, and employment. Turning to education, improving opportunities and removing barriers for students with disabilities is an ongoing process, as evidenced by the lower levels of educational attainment among people with disabilities. Employers may be unaware of the capacity of people with disabilities, unfamiliar with how to recruit and hire them, and unfamiliar as well with workplace accommodations. Moreover, several reports document that people with disabilities face attitudinal barriers and stigma in the labor market, a perception that is reinforced by a recent field study finding that employers were less likely to respond to resumes and cover letters from job candidates who disclosed disabilities, even when the candidates were equally qualified as those without disabilities.

Medical Cannibis in Minnesota

In The Politics of Autism, I write:

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

These approaches sometimes include marijuana.

From JD Supra:

On August 1, 2018, some Minnesotans diagnosed with obstructive sleep apnea or autism will be able to use medical cannabis to alleviate symptoms associated with those conditions for the first time. Individuals diagnosed with either condition were eligible to begin the state’s registration and enrollment process on July 1, 2018, for access to medical cannabis beginning one month later. These most recent additions to Minnesota’s medical cannabis “qualifying conditions” list exemplify a significant shift in potential eligibility for medical cannabis. In the early years of medical cannabis, states often restricted eligibility to a short list of very severe conditions. However, several states have since expanded their qualifying conditions lists – meaning that individuals diagnosed with a wide variety of conditions may now be using medical cannabis. This raises a number of issues for employers; schools/childcare providers; and healthcare providers who are increasingly likely to have employees, students, or patients who are using or pursuing medical cannabis.

Official details here. 

Autism and Polycystic Ovary Syndrome

In The Politics of Autism, I discuss various ideas about what causes the condition. Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious studies:

• Pesticides;
• Air pollution and proximity to freeways;
• Maternal thyroid issues;
• Autoimmune disorders;
• Induced labor;
• Preterm birth;
• Fever  
• Birth by cesarean section;
• Maternal and paternal obesity;
• Maternal diabetes;
• Maternal and paternal age;
• Maternal post-traumatic stress disorder;
• Smoking during pregnancy;
• Antidepressant use during pregnancy;

A release from Cambridge University:

Women with polycystic ovary syndrome (PCOS) are more likely than other women to have an autistic child, according to an analysis of NHS data carried out by a team at Cambridge University's Autism Research Centre. The research is published today in the journal Translational Psychiatry.

PCOS affects about one in ten women and is caused by elevated levels of the hormone testosterone. It is associated with fluid-filled sacs (called follicles) in the ovaries, and with symptoms such as delayed onset of puberty, irregular menstrual cycles, and excess bodily hair.

...

Professor Simon Baron-Cohen, Director of the Autism Research Centre, who supervised the research, said: "This new research is helping us understand the effects of testosterone on the developing fetal brain, and on the child's later behaviour and mind. These hormonal effects are not necessarily independent of genetic factors, as a mother or her baby may have higher levels of the hormone for genetic reasons, and testosterone can affect how genes function."

Dr Carrie Allison who co-supervised the research, said: "We need to think about the practical steps we can put in place to support women with PCOS as they go through their pregnancies. The likelihood is statistically significant but nevertheless still small, in that most women with PCOS won't have a child with autism, but we want to be transparent with this new information."

Dr Rupert Payne from the University of Bristol Centre for Academic Primary Care, a GP and the expert on the team in using GP health record data for this type of research, said: "Autism can have a significant impact on a person's wellbeing, and on their parents, and many autistic people have significant health, social care and educational special needs. This is an important step in trying to understand what causes autism. It is also an excellent example of the value of using anonymous routine healthcare data to answer vital medical research questions."

Journal Reference:

Adriana Cherskov, Alexa Pohl, Carrie Allison, Heping Zhang, Rupert A. Payne, Simon Baron-Cohen. Polycystic ovary syndrome and autism: A test of the prenatal sex steroid theory. Translational Psychiatry, 2018; 8 (1) DOI: 10.1038/s41398-018-0186-7

The Cost of a Measles Outbreak

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

Jennifer B. Rosen and colleagues have an article at JAMA Pediatrics titled: "Public Health Consequences of a 2013 Measles Outbreak in New York City."

Question: What is the burden of a measles outbreak on public health?

Findings: This epidemiologic assessment and cost analysis of a 2013 measles outbreak in New York City, New York, found 58 cases of measles infection and 3351 exposed contacts, with 78% of the age-eligible cases unvaccinated owing to refusal or intentional delay. Total direct costs to the Department of Health and Mental Hygiene were $394 448, and 10 054 personnel hours were consumed responding to and controlling the outbreak.

Meaning: Measles vaccine refusals or delays can lead to large outbreaks following measles importations, with costly and resource intensive response and containment.

Two Bills from Senator Casey

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

From Senator Bob Casey:

The Americans with Disabilities Act affirmed rights outlined in the 14th Amendment. Despite those guarantees, this past year we've seen substantial, and I would argue in many instances, very cruel efforts that threaten equality for people with disabilities. We need actions that promote and protect the dream that is at the core of the ADA. To that end, I'm introducing two pieces of legislation, the Disability Employment Incentive Act and the Office of Disability Policy Act. The first encourages businesses to hire more people with disabilities and the second establishes the infrastructure necessary to provide accurate, nonpartisan information about proposals that could harm people with disabilities.

Licensing Behavior Analysts

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

Occupational licensing is a tricky issue.  On the one hand, it can protect consumers from unqualified providers of service.  On the other hand, it can hurt consumers by limiting competition and driving up prices.  

In July 2018, Connecticut became the 30th state to require licensing of behavior analysts. Josh Kovner reports at The Hartford Courant:

While there is, and has been since 1998, a group of board certified, master’s- and doctorate-level practitioners in the state, they have been stretched thin, and the side doors to the profession were always left open.

That allowed people with far less professional training to slip in and find work in family homes and even in schools, particularly during the first decade of the 2000s, as parents with children who were newly diagnosed with autism became desperate for qualified analysts.

A person with a good rap and an affinity for working with children could earn a lot of money, at rates approaching $400 an hour — and they could keep working for months or even years, unless or until a parent or school district recognized that the impostor was skirting the requirements for studied observation: precise assessments of behaviors, careful data collection, an individualized treatment plan and follow-up.

“I called them cowboys — maybe they got a list of programs, maybe they attended a workshop, or they spent time working with someone who was qualified,” said Suzane Letso, the mother of a son with autism and a pioneer in the field in Connecticut.

Several years ago, Letso helped win title protection for the real practitioners. It became a felony for someone without board certification to call him or herself a behavior analyst. However, that didn’t stop people with no credentials from offering their services. They just avoided the title, Letso said.

“Of course it can do harm,” Julie Swanson, mother of a son with autism and a special education consultant, said of the work of unqualified behaviorists. “If the intervention doesn’t work, behavior problems can linger into adulthood, and they can become magnified in adulthood. If the assessment is wrong, then the treatment plan is going to be wrong.”

The Limits of Inclusion

In The Politics of Autism, I write about special education, testing, and inclusion.

Allison Gilmour at Education Next:

It is a mistake to equate the setting in which a student is educated (that is, the general-education classroom) with the actual progress a student is making. Such an assumption ignores the fact that students are found eligible for special-education services precisely because they are failing to progress in general education. Placement data may suggest that SWDs are being exposed to the general-education curriculum, but achievement data suggest that they are not actually learning the curriculum: SWDs placed in general-education classrooms continue to lag dramatically behind their peers. A recent meta-analysis that I conducted with my colleagues Doug Fuchs and Joe Wehby estimated that SWDs score about 1.2 standard deviations below their non-disabled peers in reading, a gap that translates to more than three years of academic growth. Achievement gaps between SWDs and their peers are similarly large in math. Though federal laws stress the importance of educating SWDs in the regular classroom, there is no good evidence that placement there improves the outcomes of these students.
...
More-recent work also finds that SWDs educated in general-education settings have better outcomes. Roddy Theobald and colleagues observed that high-school students with disabilities in Washington State who spent more time in general-education settings had higher reading scores than their peers who had less time in such settings, even after taking into account differences in prior achievement and a wide range of student characteristics. They were also more likely to graduate on time and enroll in college than students educated in more-restrictive settings. Laura Schifter has reported similar results regarding graduation for students in Massachusetts: SWDs educated in general-education classrooms have higher probabilities of graduating than their peers who were educated in more-isolated settings. These recent studies and others have led many to conclude that inclusion benefits SWDs.

Unfortunately, this determination ignores a major limitation of the current research base: the failure to account for selection bias. Students with higher academic abilities or fewer behavioral challenges are more likely to be placed in inclusive settings, while their peers who may have the same disability label but greater learning or behavioral needs are placed in special-education settings. The consistent finding that SWDs have better outcomes when educated in general-education settings likely reflects this bias. Even in studies that account for students’ prior levels of academic achievement, the researchers may not capture all the aspects of a student, such as his behavior, that can influence both the setting in which he is placed and his future outcomes. A student’s educational placement is an IEP team decision and may be based on a host of factors not included in the administrative data sets to which researchers typically have access. This makes estimating the true causal effect of inclusion on student outcomes nearly impossible.