The Community Integration Reversal and Transition Plans

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

Trump does not care.  He despises people with disabilities.  His head of the DOJ Civil Rights Division is a political hack who uses the r-word as a slur.

In August, the Department of Justice quietly released a memo pertaining to the landmark 1999 disability civil rights case Olmstead v. L.C.  That precedent, the memo claimed without evidence, increases homelessness.

Caitlynn Peetz Stephens at Education Week:

New federal guidance threatens to upend decades of progress in high school transition planning, which helps students with disabilities prepare for college, the workforce, and living independently, advocates and researchers say.

In 1999, the U.S. Supreme Court ruled in Olmstead v. L.C. that states must eliminate unnecessary segregation of people with disabilities and ensure they receive services in “the most integrated setting appropriate to their needs.” The ruling established that unjustified institutionalization constitutes discrimination under the Americans with Disabilities Act (ADA).

But in June, the U.S. Department of Justice stated it “will not rely upon the Olmstead Guidance in its enforcement” of the ADA, and that Olmstead is “not enforceable.”

The Olmstead ruling has for decades served as the backbone of students’ individualized education programs (IEPs) by requiring transition plans that teach students with disabilities 16 and older independent living skills.

Under the Individuals with Disabilities Education Act, transition plans must include goals related to postsecondary education or training, employment, and, if appropriate, independent living.

“To have a document that says segregated living is OK and transitioning into that integrated setting isn’t the priority, it’s really the antithesis of what we’re working for for 21 years of their lives in special education,” said Meghan Burke, a professor of special education at Vanderbilt University. “If now we’re saying it’s no longer the goal for youth with disabilities to be living in the community, it could potentially turn everything in transition planning on its head.”

988, Crisis Counselors, and Autistic People

In The Politics of Autism, I write about the many challenges facing people on the spectrum.  Among many other things, they are at high risk for suicide. (In July, the United States transitioned from 10-digit National Suicide Prevention Lifeline to 988 – an easy-to-remember three-digit number for 24/7 crisis care. "

Corinne Purtill at LAT:

Free, largely confidential and available 24 hours a day via call, text or online chat, the 988 Lifeline — formerly the National Suicide Prevention Lifeline — is among the most accessible and effective suicide prevention tools in the U.S.

But there are challenges for autistic people, who may process information slowly or misunderstand what the crisis counselor is saying.

“Autistic people are misunderstood and have difficulty conveying what they’re going through in a way that’s productive,” said Lisa Morgan, founder and co-chair of the Autism and Suicide Prevention Workgroup, a research collective dedicated to the issue. “The crisis counselors try to help, but end up kind of just landing wrong.”

...

Morgan, who is herself autistic, and her research partner Brenna Maddox, a clinical psychologist and co-chair of the workgroup, set out to help the 988 system do just that.

In 2023, they published a guide to help crisis workers assess whether the person they are talking to could be on the autism spectrum. It also offered specific conversation strategies that could improve the call: asking if the person has any special interests; asking clear, short, direct questions; allowing ample time for the person to respond; and being open to the caller’s own suggestions for what works for them. The final page of the guide is a single sheet of tips that crisis workers can print out and hang by their desk.

“An autistic individual may say that spinning quarters is a good distraction technique for them,” reads one tip. “Even if that sounds unusual to the crisis center worker, it is still a valid and acceptable answer.”

The following year, they published a detailed guide for autistic adults on what to expect when contacting 988. This includes the likelihood of a wait time (the 988 number connects to a network of more than 200 individual call centers around the U.S. and it can take a few minutes to find an available counselor) and how to sign off on a call or text chat. Earlier this year, the workgroup released a version for autistic youth and their caregivers.

Then last year, they achieved a goal long in the works: direct training for 988 counselors. Morgan and Maddox conducted three one-hour webinars for Vibrant that covered the fundamentals of autism, autism-specific suicide warning signs and support strategies for autistic people in crisis.

 

Demographics and Experience of Discrimination

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

Menezes, M., Linde, J., Howard, M. et al. Associations Among Demographic and Clinical Characteristics and Discrimination Experiences of Autistic Youth. J Autism Dev Disord (2025). https://doi.org/10.1007/s10803-025-07019-z.  Abstract:

Purpose

Autistic individuals experience discrimination as a neurominority. Nonetheless, there has been limited research on characteristics or factors contributing to discrimination against autistic people. Therefore, this study sought to examine demographic and clinical predictors of discriminatory experiences of autistic children and adolescents utilizing a large, population-based sample. 

Methods

Data were obtained from the 2021 and 2022 National Survey of Children’s Health, a nationally distributed caregiver-report questionnaire. Participants included 2,297 autistic youth (6–17 years old). Two separate binary logistic regressions were conducted for the prediction of race or ethnicity discrimination and health condition or disability discrimination. Predictors were child age, sex, race, ethnicity, autism “severity,” behavior problems, and intellectual disability, and household income.

Results

Results demonstrated a relationship between minoritized racial and ethnic background and increased likelihood of discrimination due to race/ethnicity and health condition/disability. Relationships between older age and greater odds of race/ethnicity and health condition/disability discrimination experiences were also found. Furthermore, “more severe” autism, intellectual disability, and challenging behavior were associated with increased odds of health condition/disability discrimination.

Conclusion

This study highlights characteristics of autistic youth that may increase their risk for experiencing discrimination and should inform practices and policies to reduce discrimination against autistic people.

Discussion:

This study examined demographic and clinical predictors of discriminatory experiences of autistic youth. Results demonstrated an association between minoritized racial and ethnic background and likelihood of discrimination due to race or ethnicity and health condition or disability. Relationships between older age and greater odds of race/ethnicity and health/disability discrimination experiences were additionally found. Furthermore, “more severe” autism, ID, and challenging behavior were related to an increased likelihood of an autistic young person having experienced discrimination due to health condition or disability.

Aligned with hypotheses, increased odds of race or ethnicity discrimination were found for autistic youth identifying as Black, Asian, multiracial, and another (non-White) racial identity (i.e., American Indian/Alaska Native or Native Hawaiian/Other Pacific Islander), as well as for Hispanic or Latino autistic children and adolescents. These findings align with previous research on racial discrimination experiences of the general population of marginalized youth (Datu, 2018; Lee et al., 2019) and marginalized youth with special health care needs (Helton et al., 2023). Results further previous research by demonstrating an association between minoritized racial and ethnic backgrounds and increased risk for race/ethnicity discrimination within the autistic community, which should prompt the implementation of policies and practices to address the complex vulnerabilities autistic youth from minoritized racial and ethnic backgrounds experience.

An increased likelihood of race or ethnicity and health condition or disability discrimination was found for older age, which was not predicted. This could result from bullying, harassment, and other forms of victimization and discrimination increasing as youth have more contact with external discriminatory systems as well as individuals in older childhood and adolescence (Fisher et al., 2000; Greene et al., 2006). In addition, victims may become more aware of their differing treatment. Peer victimizers may also become more perceptive of differences in characteristics (e.g., social differences associated with autism), and the general population may be less tolerant of social and behavioral differences in older children and adolescents than younger children (Locke et al.,2017; Rotheram-Fuller et al., 2010).

 

Early Employment Disparities

 In The Politics of Autism, I discuss the employment of people on the autism spectrum.

Yon-Hernández, J.A., Gonzales, C., Bothra, S. et al. Early Employment Outcomes in Autistic and Non-autistic Youth: Challenges and Opportunities. J Autism Dev Disord (2025). https://doi.org/10.1007/s10803-025-07001-9.  The abstract:

Autistic youth often encounter significant barriers in securing employment, including difficulties with job acquisition, limited workplace support, and reduced access to structured employment services. This study examined early employment experiences in cognitively able autistic and non-autistic youth, with a focus on job characteristics and the associated factors of employment status. Participants included 99 individuals (51 autistic, 48 non-autistic) aged 18–23. Open-ended responses were coded to characterize first job experiences, including job setting, duration, hours worked, support received, sector, and job acquisition method. Group differences were assessed using chi-square tests. Logistic regression was used to examine the predictors of employment outcomes, including IQ, executive functioning, adaptive functioning, and education level. Results revealed notable differences between groups, with 67% of autistic participants having had a first work experience compared to 86% of non-autistic participants. When unpaid experiences (such as WorkAbility/internships) were excluded, this gap widened to 50% versus 78%. Autistic participants were significantly less likely to obtain jobs through competitive hiring and were more likely to work in sales/retail-related roles, whereas non-autistic participants exhibited greater job diversity and career-oriented positions. Personal connections were critical to job acquisition for autistic individuals, although structured employment programs were also a key pathway. Executive functioning difficulties were significantly associated with lower employment likelihood. Early employment disparities persist among autistic youth, particularly in access to competitive and career-track jobs. Interventions that support executive functioning, expand structured employment options, and leverage family and social networks may enhance employment success during the transition to adulthood.

Survey on Discrimination

Many posts have discussed discrimination against autistic people.

Menezes, M., Pappagianopoulos, J., Smith, J. V., Howard, M., Brunt, S., Witte, L., Anderson, S., Boyd, B. A., & Mazurek, M. O. (2025). Prevalence of discrimination experienced by autistic youth as compared to neurotypical youth and youth with other neurodevelopmental diagnoses. Autism, 0(0). https://doi.org/10.1177/13623613241312445

Lay abstract:

Autistic individuals have described facing unfair or discriminatory treatment across settings, such as in school and at work. However, there have been few studies examining how widespread or prevalent discrimination is against autistic individuals. We aimed to fill that gap by examining how prevalent or common it is for autistic youth to experience discrimination based on race or ethnicity, sexual orientation or gender identity, and health condition or disability. We compared rates of discrimination against autistic youth to youth without developmental differences/diagnoses and youth with other developmental differences (i.e. youth diagnosed with attention-deficit/hyperactivity disorder [ADHD], learning disability, and speech/language disorders). We analyzed data from the 2021–2022 National Survey of Children’s Health, which is a nationwide survey on which parents report about aspects of their children’s lives. We found that autistic youth experience higher rates of discrimination based on race or ethnicity and sexual orientation or gender identity compared to youth who are typically developing and do not have a diagnosis (such as a speech or language disorder). Importantly, they also face significantly more discrimination due to their disability than youth with other diagnoses, such as ADHD, and youth without a developmental diagnosis. These results show that autistic youth are at risk for experiencing discriminatory treatment. Our study should motivate researchers, policymakers, and community members to address this critical issue.

Bullying, Depression, and Anxiety

 In The Politics of Autism, I discuss challenges facing autistic adults and children.  One is bullying.

Accardo, A.L., Neely, L.C., Pontes, N.M.H. et al. Bullying Victimization is Associated with Heightened Rates of Anxiety and Depression Among Autistic and ADHD Youth: National Survey of Children’s Health 2016–2020. J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-024-06479-z.  The abstract:

Autistic youth and youth with ADHD have heightened rates of bullying victimization, anxiety, and depression. The purpose of this research is to use nationally representative US data to 1) estimate the prevalence of anxiety and depression among bullied neurodivergent youth and 2) investigate whether the association between bullying victimization and anxiety or depression is significantly greater among autistic youth and youth with ADHD. For this research, we used five years of data (2016–2020) from the nationally representative National Survey of Children’s Health (NSCH), youth ages 12–17 years (n = 71,973). Data were analyzed with R and the R survey package to estimate average marginal percentages, risk differences, and additive interactions as recommended by STROBE guidelines. The study identified heightened anxiety and depression among bullied autistic or ADHD youth. Results also showed that the increase in the rate of anxiety or depression associated with bullying victimization was significantly greater among autistic youth and youth with ADHD relative to non-autistic non-ADHD youth; interactions were significant among both male and female youth. Autistic youth, youth with ADHD, and youth with co-occurring autism and ADHD are particularly vulnerable to bullying victimization and associated depression and anxiety. Future research is needed to understand why the association between bullying victimization and depression/anxiety is significantly greater among autistic and non-autistic ADHD youth. Recommendations include exploring school-wide anti-stigma initiatives to stop the reciprocal bullying–anxiety/depression cycle, routine bullying and mental health screening of autistic and ADHD youth, and clinical management of bullied autistic and ADHD youth with anxiety or depression

Autistic Youths, Healthcare Providers, and Driving

In The Politics of Autism, I write that a number of ASD people drive cars.

Myers, R.K., Labows, C., McDonald, C.C. et al. Preparing to “Live a Life of Possibilities”: Experiences of Healthcare Providers Readying Autistic Adolescents and Their Families for Independent Driving. J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-024-06335-0

Autistic adolescents and their families may experience barriers to transportation, including independent driving, which is critical to supporting quality of life and engagement in social, educational, and employment opportunities. Healthcare providers may feel unprepared to provide guidance to autistic adolescents, although they are among the professionals families turn to for guidance. This study describes providers’ experiences supporting autistic adolescents and families in the decision to pursue licensure and identifies barriers experienced in providing support. We conducted interviews with 15 healthcare providers focused on how they support autistic adolescents and their families in navigating topics related to independence, driving, and transportation. Key themes identified included: importance of understanding adolescents’ perspectives and motivations, approaches to readying caregivers for children to pursue driving, and role of providers in fostering agreement between adolescents and caregivers. Results reflect healthcare providers as intermediaries between autistic adolescents and caregivers making the decision to pursue licensure and bring families to consensus. Our findings emphasize the importance of healthcare providers, in collaboration with community-based providers, in supporting autistic adolescents and their families considering licensure. Improving conversations between providers and families provides opportunity to better support quality of life among autistic adolescents and their caregivers navigating the transition to independence.

Independence and Interdependence

 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.

Moser, C., Smith DaWalt, L., Burke, M. M., & Taylor, J. L. (2024). Emerging adulthood in autism: Striving for independence or interdependence? Autism, 0(0). https://doi.org/10.1177/13623613241245647

While some autistic youth have attitudes consistent with Arnett’s conceptualization of emerging adulthood, feeling as though they need more time to gradually move toward adulthood (Cribb et al., 2019), others consider themselves to be adults immediately after adolescence (e.g. 18 years of age; Anderson et al., 2016). This belief may lead to unattainable expectations, as most people achieve more traditional milestones of adulthood later in life (e.g. 29 years of age; Arnett, 2014). Like their non-autistic peers, it is also unclear to what extent independence should be considered a marker of adulthood in this group—particularly given the varied opinions autistic emerging adults have about the importance of self-sufficiency. For instance, although some autistic youth hope to live on their own, others report no desire to move out of the parental home (Anderson et al., 2016). Moreover, autistic emerging adults who desire greater independence can find it challenging to achieve this goal without support (Cribb et al., 2019; Sosnowy et al., 2018).

Thus, to support autistic youth in reaching their maximum potential and achieving their goals during emerging adulthood and beyond, it may be helpful to widen our focus from promoting independence, to promoting independence and interdependence. While the term interdependence has been used in various contexts, here we conceptualize interdependence as a mutual dependency between two or more people and is underscored by the notion that support should not stifle autonomy (Condeluci, 1995). Drawing from other scholars (e.g. Settersten et al., 2015), we argue that no one acts entirely independently, and thus, independence and interdependence co-occur within all people (autistic or not). Furthermore, individuals demonstrate varying degrees of independence and interdependence across domains of life and stages of development. For instance, while some emerging adults may prefer a high degree of interdependence throughout their lifespan, others may desire some degree of interdependence to gain more self-sufficiency in later adulthood (e.g. living independently).

Deputy Fatally Shoots Autistic Teen

 In The Politics of Autism, I discuss interactions between police and autistic people.  When cops encounter autistic people, they may not respond in the same way as NT people, and things can get out of hand. Among other things, they may misinterpret autistic behavior as aggressive or defiant, and respond with tasers, batons, chokeholds, or worse. Training could help.

Hannah Fry at LAT:

Ryan Gainer, a teen with autism, was a cross-country runner who worked out his frustrations with six-mile runs and dreamed of becoming an engineer.

On Saturday afternoon, the 15-year-old became upset that his parents had demanded he complete his household chores before he would be allowed to play video games or listen to music on his computer, according to DeWitt Lacy, a civil rights attorney representing Ryan’s family.

“He got upset. Any teen would be upset by that,” Lacy said. Some people with autism experience more heightened emotions and on that day Ryan responded by breaking glass on the front door, Lacy said.

A family member called 911 for help, asking dispatch to send deputies to “take him in” because he was breaking glass and hitting his sister, according to a portion of the call released by the San Bernardino County Sheriff’s Department.

But instead a responding deputy fatally shot the teen, saying he had threatened the deputy with a garden tool.

 

Nevada to Establish Diversionary Court Program

In The Politics of Autism, I discuss interactions between the justice system and autistic people.

Casey Harrison at The Las Vegas Sun:

Nevada is primed to become the first in the nation to establish a diversionary court program statewide for at-risk adolescent youths with autism, a move officials say will help children on the spectrum stay on a path of success.

Gov. Joe Lombardo held a ceremonial signing Monday in Las Vegas for Senate Bill 411, which allows family courts statewide to establish an “appropriate program” for children diagnosed with or suspected to have autism spectrum disorders. The bill passed unanimously through the Nevada Legislature.

“It shows you how much effort it takes to have successful legislation,” Lombardo told attendees at the Grant Sawyer State Office Building, which included autism advocates, judges and public defenders. “The thing that surprised me with today’s bill is that it hasn’t happened before today. And that’s unfortunate, but now, fortunately, we’re moving forward as a community.”

A child assigned to the program must be made aware of the terms for successful completion of the program, including probation or other informal supervision, and the court must also provide benchmarks to “ensure that every child is making satisfactory progress” toward completing the program.

Clark County’s 8th Judicial District Court launched a similar diversionary program in 2018, spearheaded by juvenile court Judge Sunny Bailey, who is the mother of an autistic child, she told the Sun.

That program, which is called Detention Alternative for Autistic Youth, or DAAY Court, came about after Bailey was assigned a case involving a delinquent on the spectrum. She and others from the district attorney’s office volunteered on the side to develop a tailored supervision program to fit that child’s needs.

IEPs and Transition Planning

 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.

Pediatrics 

JUNE 22 2023

Individualized Education Programs and Transition Planning for Adolescents With Autism 

Michelle M. Hughes, PhD; Anne V. Kirby, PhD; John Davis, PhD; Deborah A. Bilder, MD; Mary Patrick, MPH; Maya Lopez, MD; Leann S. DaWalt, PhD; Elise T. Pas, PhD; Amanda V. Bakian, PhD; Kelly A. Shaw, PhD; Monica DiRienzo, MA; Allison Hudson, BS; Yvette D. Schwenk, MS; Thaer M. Baroud, MHSA; Anita Washington, MPH; Matthew J. Maenner, PhD

OBJECTIVES:

The study objectives were to examine the contents of individualized education programs (IEPs) of adolescents with autism spectrum disorder (ASD), including postsecondary transition goals, services, and changes in special education classification over time.

METHODS:

This study involved a longitudinal population-based surveillance cohort from the Autism Developmental Disabilities Monitoring Network from 2002 to 2018 in 3 catchment areas in the United States. The sample included 322 adolescents who were born in 2002, identified with ASD, and had an IEP available for review at ages 15–16 years. 

RESULTS:

We found that 297 (92%) adolescents with ASD had an IEP including a transition plan. Those without intellectual disability (ID) were more likely to have postsecondary education and employment goals and have those goals be to pursue higher education or competitive employment compared with those with ID. Forty-one percent of adolescents with ASD had a postsecondary living arrangement goal. Although 28% of adolescents with ASD received school-based mental health services, none of these adolescents were Black; additionally, 15% of those with ID received mental health services compared with 34% without ID. The percentage of adolescents with ASD served under an autism classification increased from 44% at age 8 years to 62% by age 16.
CONCLUSIONS:

We identified gaps and disparities in school-based postsecondary transition planning. Working with education partners, families, and adolescents will be important to identify what challenges contribute to these findings and what supports are needed to improve the equity and quality of the transition planning process for adolescents with ASD so they are prepared for adulthood.

Autistic Adolescents

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 Journal of Adolescent Health, Michelle M. Hughes and colleague have an article titled "
Adolescents With Autism Spectrum Disorder: Diagnostic Patterns, Co-occurring Conditions, and Transition Planning  Abstract:

Purpose

The objectives of this study were to describe child characteristics associated with later autism spectrum disorder (ASD) identification and the health status and educational transition plans of adolescents with ASD.

Methods

Longitudinal population-based surveillance cohort from the Autism Developmental Disabilities Monitoring Network during 2002–2018 in five catchment areas in the United States. Participants included 3,148 children born in 2002 whose records were first reviewed for ASD surveillance in 2010.

Results

Of the 1,846 children identified in the community as an ASD case, 11.6% were first identified after age 8 years. Children who were more likely to have ASD identified at older ages were Hispanic; were born with low birth weight; were verbal; had high intelligence quotient or adaptive scores; or had certain co-occurring neuropsychological conditions by age 8 years. By age 16 years, neuropsychological conditions were common with more than half of the adolescents with ASD having a diagnosis of attention-deficit/hyperactivity disorder or anxiety. Intellectual disability (ID) status was unchanged for the majority (>80%) of children from ages 8–16 years. A transition plan was completed for over 94% of adolescents, but disparities were observed in planning by ID status.

Discussion

A high percentage of adolescents with ASD have co-occurring neuropsychological conditions, markedly higher than at age 8. While most adolescents had transition planning, this occurred less often for those with ID. Ensuring access to services for all people with ASD during adolescence and transition to adulthood may help to promote overall health and quality of life.

Vicious Beating of Autistic Teen

In The Politics of Autism, I write:

People with disabilities are victims of violent crime three times as often as people without disabilities. The Bureau of Justice Statistics does not report separately on autistic victims, but it does note that the victimization rate is especially high among those whose disabilities are cognitive. A small-sample study of Americans and Canadians found that adults with autism face a greater risk of sexual victimization than their peers. Autistic respondents were more than twice as likely to say that had been the victim of rape and over three times as likely to report unwanted sexual contact.

 Emma Seiwell and Thomas Tracy at NY Daily News:

Detectives have identified the three teens who allegedly beat a 15-year-old autistic boy in an upper Manhattan subway station as others yelled the n-word at him in an attack that police are investigating as a possible hate crime.

The three teens hadn’t been arrested by Tuesday, as community activist groups decried the sheer viciousness and flippant racism seen in the video.

The boy, sporting glasses and a blue hooded sweatshirt, was pulled off a northbound A train at the 181st St. station near Fort Washington Ave. in Washington Heights around 5:30 p.m. Friday, cops said.

Video taken of the attack shows one teen handing the victim off to a teenage girl who grabs him by his sweatshirt and forces him to walk down the crowded platform.

“Walk!” the girl screams as her frightened victim tries to get back on the train. Commuters stare as she force-marches the boy down the platform..

After being shoved down the platform, the teen tries to break free, but the girl grabs his sweatshirt tighter.

“You runnin’!” she screams. “Why you runnin’!”

As a crowd gathers, several onlookers start screaming “N----- alert!” as the victim, who is Black, tries to break free one more time and jumps back on the train.

UPDATE:

 

Cops arrest 14-year-old boy they say took part in hate-fueled beating of 15-year-old autistic boy in Manhattan subway station, police say

Investigators charged him with misdemeanor assault, aggravated harassment and menacinghttps://t.co/wydZmRE0Lh

— New York Daily News (@NYDailyNews) March 15, 2023

Peer Support

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 Journal of Autism and Developmental Disorders, Lindsay L. Shea and colleagues have an article titled "Autistic-Delivered Peer Support: A Feasibility Study."

A robust and growing evidence base has identified gaps in services and supports available to autistic adolescents and adults (Dudley et al., 2019; Kałużna-Czaplińska et al., 2018; Koffer Miller et al., 2018; Myers et al., 2015; Turcotte et al., 2016). The creation of services to meet the needs of this group is urgent, as the number of autistic youth aging into adulthood is growing (Schott et al., 2021a, 2021b; Shattuck et al., 2012). As autistic youth age, poor outcomes have been observed in multiple areas, including social and community participation, employment, interpersonal relationships, independent living, and overall quality of life (Henninger & Taylor, 2013; Roux et al., 2015; Shattuck et al., 2011, 2012; Sosnowy et al., 2018; Wehman et al., 2014). A recent meta-analysis found that approximately 50% of the autistic adults included in research studies did not achieve independence in those areas (Mason et al., 2021). Unmet needs for services to support social skills, adaptive skills such as self-care, self-acceptance, and other skill areas may result in barriers for autistic individuals to live independently and fully participate in their community (Cage et al., 2017; Henninger & Taylor, 2013; Kanne et al., 2011). Generating new service options to meet the needs of autistic adolescents and adults that can be funded by Medical Assistance, or Medicaid, is especially critical since it is a primary insurer relied upon by this group across the lifespan (Rizzolo et al., 2013; Schott et al., 2021a, 2021b; Semansky et al., 2011b).

...

The goal of this paper is to examine areas of feasibility (i.e., demand, practicality, and acceptability; Bowen et al., 2009) of an autistic-delivered peer support program aimed at enhancing self-identified goals for community outcomes among autistic adolescents and adults. The overall goal of the initiative, the Community Autism Peer Specialist (CAPS), is to promote independent living, participation, and social relationships of autistic youth and adults by addressing individual-identified needs and goals. The CAPS initiative involved the development of a first of its kind peer specialist training program designed by and for autistic peers, which we describe briefly, followed by a description of the CAPS program itself that employed some of the trained peer specialists. We examine the level of utilization of the CAPS services and characteristics of those who have participated in the CAPS program, such as age, co-occurring conditions, social functioning, and unmet needs, with a particular interest in assessing whether autistic individuals with more service needs are willing to seek autistic-delivered peer support services. We also demonstrate practicality through self-reported relationships between peer specialists and program participants in agreement on the goals and tasks and development of bond. Moreover, we evaluate acceptability by assessing both participants and peer specialists’ satisfaction with the program. This information is critical to informing future efforts aimed at expanding the availability of similar peer support initiatives for autistic individuals focused on enhancing community outcomes.

...
We provide empirical data about the feasibility and acceptability of an autistic-delivered peer support intervention for transition-age youth and adults. Data from 29 participants who were referred to the program suggest that s. Participants were generally highly engaged in the services and reported high levels of satisfaction with most aspects of the program.

Evaluating Transition Research

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.

Kristen Bottema-Beutel and colleagues have an article at Autism titled  "An evaluation of intervention research for transition-age autistic youth."  The lay abstract:

In this study, we assess the quality of intervention research that focuses on autistic youth who are 14–22 years old. We found 193 different studies on this topic, and carefully reviewed them. Most of these studies tested strategies that were behavioral. This means that they used procedures like prompting and rewards to change participants’ behavior. We found that the majority of studies had problems that make it hard to determine whether or not the intervention worked. The problems related to how researchers designed their studies, and how they measured the study outcomes. We also found that researchers rarely tried to find out if the strategies they studied had unintended negative effects for participants. Because of these issues, we make suggestions for how researchers might design better studies that will let people know how well the strategies worked.

Suicide Prevention

In The Politics of Autism, I write about the many challenges facing people on the spectrum.  Among many other things, they are at high risk for suicide. (In July, the United States transitioned from 10-digit National Suicide Prevention Lifeline to 988 – an easy-to-remember three-digit number for 24/7 crisis care. "

In a book titled Youth Suicide Prevention and Intervention: Best Practices and Policy Implications (eds. John P. Ackerman, Lisa M. Horowitz), Katie Johanning-Gray and colleagues have a chapter titled "Preventing Suicide in Youth with Intellectual and Neurodevelopmental Disorders: Lessons Learned and Policy Recommendations."  The abstract:

Preventing suicide in youth with autism spectrum disorder (ASD) and other intellectual and neurodevelopmental disorders (INDs) is a critical issue. In the USA, the overall number of individuals living with ASD and other developmental disabilities has been increasing in prevalence; in 2014 the prevalence of children ever diagnosed with any developmental disability was 5.76%, and this increased to 6.99% by 2016 (Zablotsky et al., 2017). Concurrent with the rise in IND prevalence is a troubling rise in the rates of suicide, with suicide now being the second leading cause of death among those between the ages of 10 and 24 in the USA (CDC, 2020). Due to gaps in our existing knowledge including a lack of validated assessment tools and suicide-specific treatments for these youth, researchers and clinicians alike grapple with how to prevent suicide in individuals with INDs. This chapter explores the evidence regarding the prevalence of suicidal ideation and behavior in this population and discusses lessons learned during the implementation of suicide prevention policies within programs serving patients with INDs at a large pediatric hospital setting.

Alcohol

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Health problems are prominent among them.

Emily Rothman and colleagues have an Autism article titled "Reasons for alcohol use and non-use by underage U.S. autistic youth: A qualitative study." Abstract:

This study describes the views and experiences of autistic youth about alcohol, including reasons for use and nonuse. We conducted 40 semi-structured interviews with autistic youth aged 16–20 years old. Of these, 20 had consumed alcohol in the past year. We used an inductive content-based analysis approach. Youth were deliberate about their choices to use, or abstain from, alcohol. Some conducted their own background research on the effects of alcohol, while others took a very measured approach to drinking and paced their alcohol consumption during drinking episodes with care. Reasons not to drink included fear of developing alcohol addiction, not liking the taste of alcohol, concern about alcohol interacting with prescribed medications, as well as the desire to avoid hangover, disinhibition, or other negative effects. On the contrary, youth had some positive alcohol expectancies: non-autistic people are more accepting when drinking, alcohol helps autistic people cope with problems, irritability, boredom, and sensory processing challenges, and helps them fit in. Results reveal that alcohol use disorder in autistic adults could have its roots in underage experiences that provide temporary relief from social anxiety, feeling socially isolated, and challenges with sensory processing. The development of evidence-based youth alcohol prevention strategies for autistic youth may be an important next step.

Readiness for Driving

In The Politics of Autism, I discuss interactions between police and autistic people.  Sometimes they occur on the road.  A number of ASD people drive cars.

A release from Children's Hospital of Philadelphia:

A collaborative study from the Center for Injury Research and Prevention (CIRP) and the Center for Autism Research (CAR) at Children’s Hospital of Philadelphia (CHOP) found that only 8% of pediatric healthcare and behavioral service providers feel prepared to assess whether their autistic patients are ready to drive. These findings, recently published in the Journal of Autism and Developmental Disorders, suggest a critical need to develop resources that prepare providers and others who work with autistic youth to effectively facilitate independence and mobility as their patients become adults.

This study is part of a body of research that aims to understand the transportation needs of autistic adolescents. Prior studies have examined how individualized training, parental support, and driving patterns contribute to safe driving. Other studies have found that, whether autistic adolescents decide to drive or not, being able to get where they want to go on their own improves psychosocial, health and employment outcomes. While making decisions about transportation, families of both autistic and non-autistic youth seek guidance from their child’s pediatric healthcare and behavioral service providers. However, little is known about these conversations or how providers approach these topics with patients.

The researchers surveyed a total of 78 providers who care for both autistic and non-autistic patients in March and April of 2019. Most providers were attending pediatric physicians and psychologists located in Pennsylvania and New Jersey. Half reported they had general transportation-related discussions with their non-autistic patients, while only 1 in 5 had these conversations with their autistic patients. When discussing driving, 33% of providers believed they could assess if their non-autistic patients were ready to drive, while only 8% believed they could do so for their autistic patients.

“It was also surprising to learn that only 1 in 4 providers refer their patients, autistic or not, to other providers for driving-related issues,” says Emma Sartin, PhD, MPH, lead author and a postdoctoral fellow at CIRP. “Our next steps will be to start developing resources and tools so that families, and the professionals who support them, are not left largely on their own to make or guide important decisions about driving.”

A lack of guidance for families on how to navigate transportation decisions could be critical, as previous CHOP research found that two-thirds of 15- to 18-year-old autistic adolescents without intellectual disability are currently driving or planning to drive, and 1 in 3 autistic individuals without intellectual disability get licensed by age 21. Other recent research conducted at CHOP found that newly licensed young autistic drivers have similar to lower crash rates than their non-autistic peers, suggesting those who do become licensed are generally safe drivers. Additionally, young autistic drivers are much less likely to have their license suspended or to receive a traffic violation than their non-autistic peers.

“One important way that providers can help autistic teens and their families is to start talking about driving and transportation before they get to high school,” says Benjamin E. Yerys, PhD, study author and a clinical psychologist at CAR. “We know this seems early, but it provides more time for them to benefit from supports, including those services that come from outside of healthcare, including tailored instruction from a driving rehabilitation specialist.”

Resources for families to help their autistic teens transition to adulthood are available at the Center for Autism Research at CHOP and TeenDriverSource.org.

This research was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development at the National Institutes of Health Awards R01HD079398 and R01HD096221.

Sartin et al, “Brief Report: Healthcare Providers’ Discussions Regarding Transportation and Driving with Autistic and Non-autistic Patients.” J Autism Dev Disord. Online December 1, 2021. DOI: 10.1007/s10803-021-05372-3

National Autism Indicators: Mental Health

The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families. 

From Drexel University:

 KEY FINDINGS

Autistic children and adults have high rates of co-occurring mental health conditions. Treatment or counseling from mental health professionals was common, however mental health services were difficult to access and parents of autistic children often report needing more mental health care. Psychotropic medication use is common in autistic children and adults, especially in those with co-occurring mental health conditions such as depression. Mental health conditions are also the most common cause for hospitalization in autistic children and adults. Autistic children with unmet need for mental health care were less likely to participate in their community than children who had no unmet need for mental health care.

OVERVIEW

The purpose of this report is to catalogue indicators of mental health and mental health care to highlight areas of needed improvement in practice and policy. Mental health care is an urgent priority and this report documents barriers that individuals and families face when trying to access mental health care. Good health and wellbeing require effective interventions and supportive policy to ensure that mental health needs of autistic children and adults are effectively addressed.

SUGGESTED CITATION

Rast, Jessica E., Garfield, Tamara, Roux, Anne M., Koffer Miller, Kaitlin H., Hund, Lisa M., Tao, Sha, Kerns, Connor M., Rosenau, Kashia A., Hotez, Emily, Anderson, Kristy A., Shattuck, Paul T., and Shea, Lindsay L. National Autism Indicators Report: Mental Health. Philadelphia, PA: Life Course Outcomes Program, A.J. Drexel Autism Institute, Drexel University, August 2021

From the report: 

Forty-four percent of autistic students reported frequent anxiety or depression in their freshman year. Twenty-two percent of all other freshman students reported the same. Autistic students with frequent anxiety or depression were more likely to rate their emotional health below average than their peers without autism (27% versus 16%). Nearly three-quarters of autistic students reported being overwhelmed by all they had to do. Mental health conditions were more common in this group than in the overall group of autistic students, with 62% reporting a psychological disorder. However, the rate of ADHD was the same, while still higher than peers without autism

COVID and Transportation

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

 At The Journal of Autism and Developmental Disorders, Beth Pfeiffer and colleagues have an article titled "Impact of COVID-19 on Community Participation and Mobility in Young Adults with Autism Spectrum Disorders."

Transportation and mobility for community integration is difficult for persons with ASD under normal circumstances (AOTA, 2008; Feeley et al., 2015; Friedman & Rizzolo, 2016; Newman et al., 2011), but the impact of COVID-19 made access even more difficult. COVID-19 had a significant impact on the lives of the six study participants based on GPS and daily reporting data. For all participants, the number of trip destinations, as well as travel modes, were substantially reduced during the first after COVID-19 period which immediately followed the closure, with only very small increases in the second after COVID-19 period. Specifically, all six of the study participants had significant reductions in the after COVID-19 periods in transportation modes used, total destinations for all five categories analyzed, time out of home, median daily activity living space, and distance traveled. Business closures and shutdowns significantly decreased activities by restricting services to those deemed essential (Office of the Governor, 2020a, 2020b; Wolf, 2020a). All participants had reduced trips for essential function. Additionally, five of the six participants had reduced trips for non-essential functions, with two making zero trips for non-essential functions.

...

Perhaps the most significant contribution of this study is to illustrate the lack of access to different transportation modes during the after COVID-19 periods. None of the six participants reported any type of travel provided by a social or human services agency to ensure essential needs were being met during this time period. As described in the Daily Community Mobility and Participation questionnaires, the first participant only traveled three times during the two after COVID-19 periods and only for ADLs/IADLs. This was even more significant for the second participant who used five different modes for community mobility during the before COVID-19 period, but only walked for nonessential purposes including RLEA and a few SA. Participant 2 only traveled once during this timeframe and was driven by someone else for an essential purpose.