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Showing posts with label mental health. Show all posts
Showing posts with label mental health. Show all posts

Saturday, June 20, 2026

Trump Wants to Bring Back Snake Pits

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

Julia Metraux at Mother Jones:

On Thursday, the Department of Justice quietly released a memo pertaining to the landmark 1999 disability civil rights case Olmstead v. L.C., which curtailed states’ power to institutionalize people diagnosed with mental illnesses, and related federal civil rights laws. That precedent, the Trump administration memo argues—in conjunction with federal civil rights and disability rights statutes—increases homelessness, a claim that likely signals a push to expand institutionalization in restrictive psychiatric facilities.

The administration’s claims, according to University of Michigan law professor Sam Bagenstos, are not rooted in fact.

“It’s just absurd,” says Bagenstos, general counsel for the Department of Health and Human Services and the Office of Management and Budget during the Biden administration, calling the Olmstead decision “one of the most effective tools in combating homelessness” by encouraging states to augment mental health and housing services outside institutions.

More concerning is the fact that the White House instructed the Justice Department to produce the document, which Bagenstos says “suggests we might potentially be seeing an executive order” directing DOJ and the Department of Health and Human Services to roll back rules meant to avoid institutionalization. The memo, however, does not change laws itself.

Last year at The Daily Caller, Reagan Reese reported an interview with Trump:

 REESE: It’s horrible. I want to get to Russia. I want to ask you another question about D.C. crackdown. Would you be open to the government reopening insane asylums for people with serious mental illness?
TRUMP: Yeah I would.
REESE: You would?

TRUMP: Well, they used to have them, and you never saw people like we had, you know, they used to have them. And what happened is states like New York and California that had them, New York had a lot of them. They released them all into society because they couldn’t afford it. You know, it’s massively expensive. But we had, they were all over New York. I remember when I was growing up, Creedmoor. They had a place, Creedmoor, they had a lot of them, Bellevue, and they were closed by a certain governor. And I remember when they did, it was a long time ago, and I said they didn’t release these people? And they did. They released them into society, and that’s what you have. It’s a rough, it’s a rough situation.

Creedmoor was a notorious snake pit.  See a 2012 piece in AbandonedNYC:

Creedmoor State Hospital was habitually under scrutiny during this period, beginning in the 1940s with an outbreak of dysentery that resulted from unsanitary living conditions in the wards.

The hospital had spiraled completely out of control by 1974 when the state ordered an inquiry into an outbreak of crime on the Creedmoor campus. Within 20 months, three rapes were reported, 22 assaults, 52 fires, 130 burglaries, six instances of suicide, a shooting, a riot, and an attempted murder, prompting an investigation into all downstate mental hospitals. As late as 1984, the violent ward of Creedmoor Psychiatric Center was rocked with scandal following the death of a patient, who had been struck in the throat by a staff member while restrained in a straitjacket.

In the late 20th Century, the development of antipsychotic medications and new standards of treatment for the mentally ill accelerated a trend toward deinstitutionalization.  A series of dramatic budget cuts and dwindling patient populations led to the closing of farm colonies across the United States, and a marked decline at Creedmoor.  The campus continues to operate today, housing only a few hundred patients and providing outpatient services, leaving its turbulent past behind.  Many of the buildings have been sold off to new tenants.  Others, like Building 25, lie fallow.

 Snake pits like Creedmoor housed many autistic people.


 

Sunday, February 1, 2026

Suicidality

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. "

Nuzum, E., Medeisyte, R., Eshetu, A. et al. Autistic traits and suicidality in midlife and old age: investigating mediating effects of mental health and social connectedness. Nat. Mental Health (2026). https://doi.org/10.1038/s44220-025-00579-0 Abstract:
Suicidality is increased among middle-aged and older autistic adults, but little is known about the underlying factors linking autism with suicidality in midlife and older age. Here we report a cross-sectional observational study of 9,979 adults (76% female) aged 50+ years who completed questionnaires measuring autistic traits, current mental health, social connections and suicidality (suicidal ideation and suicidal self-harm). We use path analysis to explore the relationship between autistic traits and suicidality and the mediating effects of current mental health, social connectedness and male/female sex. Our results find that depression, anxiety, post-traumatic stress disorder (PTSD), loneliness and social isolation all significantly mediate the relationship between autistic traits and suicidal ideation, with small effect sizes. For suicidal self-harm, male sex, depression, PTSD and social isolation were found to be mediators. We conclude that mental health difficulties and social isolation mediate higher rates of suicidality in 50+-year-olds with high autistic traits. Targeted and individually tailored interventions for people on the autism spectrum across the lifespan are important.

Saturday, January 31, 2026

Twice-Exceptional Learners

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

Assouline, S. G., Schabilion, K., & Trog, M. (2025). Evolving Educational Legislation Transforms Twice-Exceptional Research and Educational Practice. Gifted Child Today, 49(1), 76-84. https://doi.org/10.1177/10762175251381364 (Original work published 2026)

Abstract

This article describes the historical evolution of U.S. federal education policy as it pertains to the constructs of disability and giftedness, which were originally treated as distinct domains. However, policy shifts and research initiatives revealed the intersection of the two domains, which led to recognition of twice-exceptional individuals as learners with unique needs related to talent development. Evolving definitions and educational practice shaped two decades of research. A case-example highlights the importance of comprehensive psychoeducational evaluations to understand the nuanced educational and social-emotional needs of twice-exceptional learners. Seven recommendations focus on strength-based approaches to educational practice.

From the article (see references in link above):

The preceding discussion highlights our evolving understanding of twice-exceptionality and makes salient the importance of evidence-based approaches to identification and intervention. The following, grounded in more than two decades of research and clinical experience, provide guidelines for practitioners and policymakers that align with the goals of the Javits Act: to increase educational access and talent development for underserved learners.
(1) Conduct comprehensive individual evaluations to reveal both intraindividual (i.e., relative) and interindividual (i.e., absolute or normative) strengths and challenges. Do not rely on interindividual differences as the sole determinant of the presence of a disorder. Reliance on only interindividual differences increases the likelihood of missed or misdiagnosis of twice-exceptional students (Assouline et al., 2010; Maddocks, 2018; Schabilion, 2020). Intraindividual differences can reveal the student’srelative weaknesses in academic performance, which may warrant accommodations and/or interventions to address the challenges.
(2) Recognize that the high likelihood of co-occurring diagnoses among twice-exceptional students may further complicate diagnosis and intervention, as well as research, with these students. Schabilion (2020) found that 60% of her analytic sample of individuals with SLD-WL also had a diagnosis of ADHD, which may have conflated findings regarding psychosocial profiles.
(3) Prioritize domain-specific data when making decisions regarding programming and services, especially talent development opportunities, for twice-exceptional students. Because of the frequent intraindividual variation within twiceexceptional students’ profiles, use of overall composite scores that integrate multiple domains will prevent thorough understanding of twice-exceptional students’ strengths and weaknesses. For example, use of the Full Scale IQ as an eligibility criterion for talent development programs is likely to exclude twice-exceptional students because of their weaknesses in working memory and processing speed (Assouline et al., 2010; Schabilion, 2020).
(4) Thoroughly explore the student’s individual strengths and weaknesses to avoid misattributing the origin of difficulties to attitude or behavior. Often, observed behaviors that adults describe as “laziness” or lack of motivation reflect skill deficits that are overshadowed by strengths (Assouline et al., 2010); yet these deficits require intervention.
(5) Understand the interplay between psychosocial skills and academic achievement and provide supportive learning environments (Doobay et al., 2014).
(6) Consider academic acceleration, including subject and/or whole-grade acceleration, as a talent development intervention for twiceexceptional students. However, as with all acceleration decisions, a child-study team must consider the individual student’s readiness vis` a-vis the diagnosis and domain-specific strengths as well as the learning environment (LeBeau et al., 2025).
(7) Recognize the complex mental health concerns when high cognitive ability and neurodevelopmental diagnoses intersect (Casten et al., 2023).

Sunday, September 28, 2025

Trump and Stigma

 In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally.   As his words and actions have shown, he despises Americans with disabilities  He told his nephew Fred that severely disabled people -- such as Fred's son -- should "just die."

Caitlin GIbson at WP:

Ashley Kline had made a point to avoid watching the White House briefing about autism. She already had a sense of what President Donald Trump and Health and Human Services Secretary Robert F. Kennedy Jr. might say, and how it would make her feel to hear them say it. As the mother of a 5-year-old autistic son, she’d decided: “I wouldn’t let it get to me.”

But after the news conference ended Monday, Kline picked up her phone and scrolled through the breaking news stories. As she stood in her kitchen in Indiana, her attention vacillated between the reality around her and the one on her screen. She started cooking dinner for her family. She saw that the president had told pregnant women they should only take Tylenol if they couldn’t “tough it out.” She helped her 5-year-old, Andrew, and his big brother make birthday cards for their dad. She read that Trump had referred to autism as a “horrible, horrible crisis.”

...

To Kline, this kind of rhetoric feels both harmful and ominous. “I definitely fear that if we keep trending along this path where we are buying what these leaders are selling, telling us that autism is horrible and it rips families apart —” Kline pauses. “I don’t want it to get to a point where inclusion is just thrown out the window, and people start insisting that the best thing for autistic children and adults is to be hidden behind walls once again.”

 In the not-too-distant past, autistic people got the label of "retarded" or "mentally ill" and ended up in snakepit institutions such as Creedmoor Psychiatric Center. At The Daily Caller a few weeks ago, Reagan Reese interviewed Trump:

REESE: It’s horrible. I want to get to Russia. I want to ask you another question about D.C. crackdown. Would you be open to the government reopening insane asylums for people with serious mental illness? 
TRUMP: Yeah I would.

REESE: You would?

TRUMP: Yeah I would.

TRUMP: Well, they used to have them, and you never saw people like we had, you know, they used to have them. And what happened is states like New York and California that had them, New York had a lot of them. They released them all into society because they couldn’t afford it. You know, it’s massively expensive. But we had, they were all over New York. I remember when I was growing up, Creedmoor. They had a place, Creedmoor, they had a lot of them, Bellevue, and they were closed by a certain governor. And I remember when they did, it was a long time ago, and I said they didn’t release these people? And they did. They released them into society, and that’s what you have. It’s a rough, it’s a rough situation.

REESE: How soon –

TRUMP: Why is that a big thing? People are thinking about that?

REESE: Well –

TRUMP: Because, you can’t have these people walking around.

Sunday, September 14, 2025

The Physical and Mental Health of Autistic Adults

In The Politics of Autism, I write about the everyday struggles facing autistic people and their families.

Lay Abstract:

Autistic adults often face a range of physical and mental health conditions, but the relationship between these two types of health issues is not well understood. Our study looked at how often physical and mental health conditions in autistic adults occurred. We also examined the relationships between these conditions using a method called psychometric network analysis. We surveyed 327 autistic and 274 non-autistic adults, aged 30–90 years, about potential health conditions they faced and the perception of the quality of their health, also known as health-related quality of life. We found that autistic adults had a lower health-related quality of life and reported higher rates of all mental health conditions. Mood (45%), anxiety (22%), and personality disorders (21%) were most common. Autistic adults were between six and 34 times more likely to have these mental health conditions compared to non-autistic adults. In terms of physical health, autistic adults reported higher rates of bowel conditions (27%), allergies (48%), hypothyroid conditions (6%), and less robustly of strokes (CVA/TIAs; 3%), and rheumatic conditions (31%)— and a two- to four-times higher risk than non-autistic adults. Using psychometric network analysis, we found that mental health conditions in autistic adults are closely linked, showing how complex their health challenges are. While there was no single condition that connected physical and mental health in particular, we found several links between the two. These findings emphasize the need for improved healthcare and broader societal changes to enhance the well-being of autistic individuals.

From the article:

In the physical health domain, bowel conditions, respiratory conditions, and allergies showed most connections to other conditions in the network, suggesting they may be key targets for intervention. Hypothetically, they add to the stress that autistic adults already face and deteriorate other physical and mental health problems (Grant et al., 2022). Evidently, such conditions might also be a consequence of stress and MHCs (Ohrnberger et al., 2017). In both cases, improved medical care might reduce the burden for autistic adults. As noted by others, it is essential to take away existing healthcare barriers (Malik-Soni et al., 2022; Mason et al., 2019; Walsh et al., 2020; Warreman, Ester, et al., 2023). The SPACE framework (Sensory needs, Predictability, Acceptance, Communication, and Empathy) highlights principles for making healthcare more accommodating (Doherty et al., 2023). First steps can be in simple solutions such as increasing consultation time to adapt to longer processing time, securing consistent healthcare providers to accommodate a need for consistency and familiarity, and embedding e-Health solutions to ease communication (Mason et al., 2019; Warreman, Ester, et al., 2023). In addition, addressing the “triple empathy problem”—the mutual misunderstandings between autistic individuals and healthcare providers—might reduce healthcare avoidance and improve interactions (Shaw et al., 2024).

 


Saturday, December 7, 2024

Suicide Risk

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. "

Brown, C.M., Newell, V., Sahin, E. et al. Updated Systematic Review of Suicide in Autism: 2018–2024. Curr Dev Disord Rep 11, 225–256 (2024). https://doi.org/10.1007/s40474-024-00308-9

Abstract:

The purpose of this review is to provide a comprehensive update of literature published between January 2018 and April 2024, examining suicidal thoughts and behavior (STB) prevalence, risk factors, theoretical models, and interventions in autism.
Recent findings

We identified four recent meta-analyses and two systematic reviews. Pooled prevalence estimates in autism ranged from 34.2% for suicide ideation to 24.3% for suicide attempts. Autistic traits, interpersonal factors, and depressive symptoms were identified as STB risk factors, with elevated risk observed across the lifespan.
Summary

We included 80 studies examining STB in diagnosed autistic people or autistic traits in non-clinical samples. Autistic people were found to have an up to eightfold increased risk of death by suicide compared to non-autistic people, although reported rates varied considerably between studies; co-occurring mental health conditions, social, psychological, and cognitive factors exacerbated risk. Validated STB assessment tools and interventions for autistic people were notably scarce.

Thursday, October 24, 2024

Measuring Quality of Life and Mental Health

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.
Timmerman, A., Totsika, V., Lye, V., Crane, L., Linden, A., & Pellicano, E. (2024). Quality-of-life measurement in randomised controlled trials of mental health interventions for autistic adults: A systematic review. Autism, 0(0). https://doi.org/10.1177/13623613241287586. Lay abstract:
Autistic people are more likely to have co-occurring mental health conditions compared to the general population, and mental health interventions have been identified as a top research priority by autistic people and the wider autism community. Autistic adults have also communicated that quality of life is the outcome that matters most to them in relation to mental health research and that they want to be involved more actively in the research process. Our systematic review aimed to determine the extent and nature of (1) quality of life measurement in randomised controlled trials of mental health interventions for autistic adults and (2) community involvement taking place within identified randomised controlled trials. We searched Medline, Embase, APA PsycInfo, Web of Science and grey literature sources. After screening over 10,000 records, 19 studies were eligible and five of those studies measured quality of life as an outcome. Of those five, three included community involvement and two did not report on community involvement. We conclude there is a need for increased use of quality of life measurement when trialling mental health interventions, including the use of measures validated for autistic adults – which would be facilitated by greater autistic involvement in the research process

Tuesday, August 27, 2024

Autism and 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

 Emily Alpert Reyes at LAT:
Some researchers have estimated that upward of 90% of autistic youth have overlapping conditions like anxiety, depression or ADHD. Many have suffered alarming levels of trauma.

Yet “there are very few specialized facilities in the country that meet the unique needs of individuals with autism and co-occurring mental health conditions,” especially in crisis situations, said Cynthia Martin, senior clinical psychologist at the Child Mind Institute, which is based in New York.

Between 2020 and 2021, the number of California children and teens served by the state developmental disability system who were deemed to have “complex needs” — a state term for those who needed a range of crisis services or landed in a locked psychiatric ward — rose from 536 to 677, according to a report released last year by the California Department of Developmental Services.
...

Autistic people and their families have also lamented that they cannot find adequate help in their communities before they reach a crisis point. Researchers have found that mental health workers are often unprepared to work with people with intellectual or developmental disabilities or may chalk up symptoms to their disabilities, rather than overlapping needs.

“It’s pretty common for a mental health practitioner to turn away someone with a developmental disability or say, ‘I don’t serve that population,’” said Zoe Gross, director of advocacy for the Autistic Self Advocacy Network.

Thursday, June 13, 2024

AI Companionship

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

Webb Wright at Scientific American:

Many mental health experts have serious concerns about people who are socially isolated—autistic or not—relying on AI companionship apps as a means of self-treatment or escapism. The problem is “not the inherent content of the AI,” says Catherine Lord, a clinical psychologist in Los Angeles who specializes in autism. But she worries that AI can exacerbate a user’s isolation if the technology is used without the guidance of trained therapists. (Replika and WithFeeling.AI, Paradot’s parent company, have not responded to Scientific American’s requests for comment.)

The open-ended interactions provided by such apps present a double-edged sword for autistic users. Personalized avatars that respond to user behavior with encouraging, humanlike language could help autistic people open up about themselves, especially in ways they may not be able to with other individuals. But these avatars—unlike real people—are always available and very rarely criticize anyone’s opinions. “You end up in this circuit where you have an algorithm dressed up as a human telling you that you’re right and maybe pushing you towards bad choices,” says Valentina Pitardi, an associate professor of marketing at Surrey Business School in England, who has studied the emotional impacts of AI companionship apps.

...

Lord also points to what she regards as a lack of real data that show any kind of therapeutic benefit of AI-powered apps for autistic users. She draws a comparison to prescription drugs: new medications must pass rigorous human trials before legal approval, and the same should be true of AI for autistic users, in her view. “It should be clear what the risks are and what the true value is,” she says. But many companion apps are only a few years old, and autism research is often a painstakingly slow process. For more than three decades, Lord has been running a single longitudinal study of autistic people, for example. It will take some time before she and other autism experts fully understand the technology’s potential consequences.

Wednesday, February 21, 2024

Autistic College Students, Social Connections, Depression, and Anxiety


 In The Politics of Autism, I discuss the growing number of college students on the autism spectrum

 McKenney, E. E., Richards, J. K., Day, T. C., Brunwasser, S. M., Cucchiara, C. L., Kofner, B., McDonald, R. G., Gillespie-Lynch, K., Lamm, J., Kang, E., Lerner, M. D., & Gotham, K. O. (2024). Satisfaction with social connectedness is associated with depression and anxiety symptoms in neurodiverse first-semester college students. Autism, 0(0). 

https://doi.org/10.1177/13623613231216879

Lay abstract:

How satisfied people feel with their social connections and support is related to mental health outcomes for many different types of people. People may feel less socially connected at some times in their life—like when they start college. Feeling disconnected from others could lead to depression or anxiety. The transition to college may be especially difficult for autistic students as they are more likely to have difficulties adjusting socially. In our study, we asked 263 college students to answer questions about their emotions and social satisfaction twice per week during their first semester of college. We found that students who reported being less satisfied with their social connectedness (either at the beginning or throughout the semester) tended to express more symptoms of depression and anxiety. This relationship between social satisfaction and anxiety was even stronger for people who had a strong desire for social interaction (i.e. were more socially motivated). Students with more autistic traits tended to report more mood concerns, and they also reported being less satisfied with friendships at the beginning of the semester. This information may help to support ongoing efforts to better address mental health in autistic college students by encouraging efforts to improve social satisfaction.

Wednesday, December 6, 2023

Kludgeocracy and Employment

Uncertainty and complexity are major themes of The Politics of Autism.

Political scientist Steven M. Teles has coined a term that comes in handy for any discussion of autism services: kludgeocracy. In computing, a “kludge” is a system consisting of ill- matched elements or parts made for other applications. Engineers patch it together and hook it up to an existing system in order to solve a new problem. Kludges are complicated, hard to understand, and subject to crashes. Teles says that this description fits much of American public policy: “From the mind-numbing complexity of the health care system … our Byzantine system of funding higher education, and our bewildering federal-state system of governing everything from the welfare state to environmental regulation, America has chosen more indirect and incoherent policy mechanisms than any comparable country."

 Marjorie Solomon and colleagues have a commentary at Autism Research titled "The challenges and promises of competitively employing autistic adults in the United States." 

[In] the U.S., IPS {Individualized Placement and Support] traditionally is delivered within states' mental health versus DD service systems, and this raises important questions related to its implementation with fidelity in autistic individuals served by the DD system. First, we are finding that in the California system of Regional Centers (state centers to provide services for people with disabilities), a single service coordinator takes responsibility for all service coordination (e.g., housing, independent living, transportation and mental health) in addition to supported employment for their large caseloads. Service delivery in general may be less integrated than it is in the mental health system, where it is customary for large teams working with the client on their employment, independent living, mental health, and general case coordination, to meet regularly to discuss client services. This is likely because in the mental health system, employment is considered a critical component of mental health. Employment is not at the core of what Regional Center coordinators do, and they may be unable to even stay abreast of all the employment programs and services available to their clients, given their many responsibilities. It also bears mention that, the improved integration of vocational and mental health services for autistic workers could be very useful given the high percentage of autistic individuals with mental health issues (Rast et al., 2021).

Surprisingly, upon initiating the Project we anticipated that adapting IPS for the autistic adults would be our largest challenge. Instead, we are finding that service system issues are more critical and although service systems differ by county, state, and locality, we believe that integration issues are common to them all. While both efforts may be costly and require systems change, as stated in the opening section of this Commentary, helping persons with autism to achieve lasting CIE is perhaps the most cost-effective, and socially beneficial way to improve outcomes for them, so it remains a worthy goal with potential synergistic outcomes. It is still early days, but we are hopeful that we are building a partnership within our local DD service community that can help break down barriers between agencies, engage in coordinated problem solving, and think creatively about resource and funding streams and thereby co-create a more integrated, comprehensive, and responsive supported employment system for all California adults.

Sunday, November 26, 2023

Costs and Benefits of an Autism Diagnosis



In summary then, receiving an autism diagnosis can act as a permission slip, for belonging in the autistic community, for relief from judgement (by self and others), and for access to tailored services and workplace adjustments. However, an autism diagnosis is a double-edged sword and may also come with costs (Ruiz Calzada et al., 2012). For example, autistic people diagnosed in adulthood have reported their experience of being diminished in others’ eyes, especially in the workplace (Romualdez et al., 2021). Such negative experiences may be exacerbated if the thing that drove them to seek a diagnosis was some sort of crisis: mental ill-health or burnout. As a result, many autistic people choose not to disclose their identity at work, fearing negative effects (not without reason) and thus missing out on some of the potential practical benefits (Thompson-Hodgetts et al., 2020). Most strikingly, recent research reports that one-third of autistic doctors had disclosed to no one at all at work (Shaw et al., 2023). Another example of a diagnosis having the precise opposite of the desired effect occurs in mental health services which require a primary or solitary psychiatric diagnosis such that an autism diagnosis becomes an exclusion criterion for access.

Sunday, September 10, 2023

Autistic Adults, and Services for Mental Health and Employment

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.
Studies show that autism services can be complicated, creating difficulties for autistic people and their families


The number of autistic adults is growing, but there are fewer services to support them in adulthood. Many autistic adults need some support services to lead successful adult lives. We know a lot about the services autistic adults use and some of the problems with using these services, but we do not know which services are most helpful to them and how the services they use relate to how they interact with their communities. Forty autistic adults took part in a study about service use and community participation. They completed surveys, interviews, and carried a global positioning system tracker. They answered questions about which services are most helpful in adulthood, things that make it hard to use services, and what services they needed. Most participants used two services in the past 2 years, most frequently mental health and employment services. Adults who were currently seeing a mental health counselor were more likely to be working full-time and visit more locations in the community compared to those who were not seeing a counselor. Mental health services were reported as the most helpful service they received as adults, followed by employment services. We often focus on the importance of employment services after high school, but our findings show a need for both mental health and employment services for autistic adults.

Thursday, August 10, 2023

Autism, Self-Harm, and Co-Occurring Psychiatric Diagnoses

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. "

Meng-Chuan Lai et al., "Self-Harm Events and Suicide Deaths Among Autistic Individuals in Ontario, Canada," JAMA Netw Open. 2023;6(8):e2327415. doi:10.1001/jamanetworkopen.2023.27415

Key Points

Question What are the sex-stratified rates of self-harm events and suicide death among autistic individuals vs nonautistic individuals and the associated sociodemographic and clinical risk factors?

Findings In this cohort study including 379 630 individuals regarding self-harm findings and 334 690 individuals regarding suicide death findings in Ontario, Canada, autistic females had an 83% increased risk and autistic males had a 47% increased risk of self-harm compared with nonautistic individuals, when accounting for neighborhood income and rurality, intellectual disabilities, and psychiatric diagnoses. The crude hazard ratio showed that autistic females had a 98% increased risk and autistic males had a 34% increased risk of suicide death, but these increases were associated with psychiatric diagnoses.

Meaning This study suggests that psychiatric diagnoses were significantly associated with risks of self-harm and especially suicide among autistic females and males.

Tuesday, May 9, 2023

Diagnosis Problems for Adults and Children


Lily Altavena at The Detroit Free Press:
It wasn't until Ashley Marchuck started experiencing frequent anxiety attacks at work — almost every day — that she started to suspect she might be autistic.

Working at Starbucks, she was bombarded with loud noises such as the whirr of the coffee machines, the music playing and the conversations among customers. The sensory overload was too much. The anxiety attacks, leaving her sweaty and panicked, wouldn't stop. Marchuck took a leave of absence to figure out what was going on. At 31 years old, she was diagnosed with autism spectrum disorder.

She'd realized that her anxiety attacks were a symptom of sensory issues related to autism, she said.

"It basically takes a mental crisis to get diagnosed," said, Marchuk, now 32. "And that's how it was with me, unfortunately, you know, having those anxiety attacks for months."
...

Brian Calley, former Michigan lieutenant governor and vice chair of the Autism Alliance of Michigan Board of Directors, said identification will expand as early childhood programs expand in the state. And he said pediatricians are conducting more developmental screenings but noted that such screenings won't help vulnerable populations who can't regularly go to the pediatrician's office.

Calley, who is the father of a child with autism, added that society also needs to reduce stigma around the condition. He remembers feeling unsure about seeking a diagnosis at first for his child, fearing what a diagnosis could mean.


"There's still some of that, that happens where people might notice that there's issues challenges, problems, delays, and not ready to seek a diagnosis because of societal stigma," he said.

Monday, May 8, 2023

Misdiagnosis


Claire Jack at Psychology Today:
[B]ecause autistic adolescents and adults may also experience other psychiatric issues, such as mood disorders, suicidality, and anxiety, they often come into contact with healthcare professionals because of those symptoms, as opposed to because of autism itself.3 Mental health professionals may therefore mistake autistic characteristics for those of other psychiatric disorders.4

There are also gender differences in terms of which misdiagnoses people are likely to receive. One small study found that out of 10 women who were misdiagnosed, the most common misdiagnosis was a personality disorder (one person was diagnosed with an anxiety disorder and one with psychotic spectrum disorder). In contrast, the majority of a group of seven men were diagnosed with ADHD, while two received a diagnosis of psychotic spectrum disorders and one received a diagnosis of behavioural issues.5 This and other research strongly suggest that not only is misdiagnosis a possibility but that diagnosis may be influenced by the biases and past experience of psychiatrists.
References

1. https://www.bbc.co.uk/programmes/m001kgzr Women's Hour, BBC Radio 4, 29th March 2023

2. Huang Y., Arnold S. R., Foley K. R., Trollor J. N. (2020). Diagnosis of autism in adulthood: a scoping review. Autism 24, 1311–1327. doi: 10.1177/1362361320903128, PMID: [PubMed] [CrossRef] [Google Scholar]

3. Tromans S., Chester V. (2020). Commentary on “being diagnosed with autism in adulthood: a personal case study”. Adv. Autism 7, 262–265. doi: 10.1108/AIA-03-2020-0023 [CrossRef] [Google Scholar] [Ref list]

4. Au-Yeung S. K., Bradley L., Robertson A. E., Shaw R., Baron-Cohen S., Cassidy S. (2019). Experience of mental health diagnosis and perceived misdiagnoses in autistic, possibly autistic and non-autistic adults. Autism 23, 1508–1518. doi: 10.1177/1362361318818167, PMID: [PubMed] [CrossRef] [Google Scholar]

5. Gesi C, Migliarese G, Torriero S, Capellazzi M, Omboni AC, Cerveri G, Mencacci C. Gender Differences in Misdiagnosis and Delayed Diagnosis among Adults with Autism Spectrum Disorder with No Language or Intellectual Disability. Brain Sci. 2021 Jul 9;11(7):912. doi: 10.3390/brainsci11070912. PMID: 34356146; PMCID: PMC8306851.

Thursday, April 13, 2023

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.

Thursday, March 9, 2023

Louisville Police and People with Disabilities

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.

Posts have discussed incidents in the following places:

The Justice Department has a report titled Investigation of the Louisville Metro Police Department and Louisville Metro Government.  It finds that the police and the metro government discriminate against people with behavioral health disabilities when responding to them in crisis.

In some cases, officers’ animosity toward people with behavioral health disabilities may have led to a worsening of their mental health symptoms. According to stakeholders, the treatment faced by these individuals is not uncommon. Stakeholders told us about officers making jokes about mental illness, taunting individuals in crisis, and treating unhoused individuals with “disdain.” Unnecessary and inappropriate LMPD involvement also can also lead to avoidable arrests and incarceration, which carries unique risks for people with behavioral health disabilities.

LMPD officers sometimes arrest people on multiple, redundant criminal charges, even when it is clear that the person is experiencing behavioral health problems. In one incident, officers were dispatched to a white woman who was having thoughts of self-harm, a typical scenario that can often be handled by a behavioral health response such as a mobile crisis team. Upon officers’ arrival, she was clearly experiencing illogical, disorganized thinking and delusions. The officer approached her quickly, closely, and confrontationally. She stated that she wanted to go to prison, spit in the direction of the officer, and, several minutes later, gave the officer a very light push. The officer aggressively handcuffed her and told her that she was “acting like a child” and that “quite a bit is wrong with” her. The officer arrested her and charged her with menacing, giving false identifying information, and disorderly conduct. Officers once again encountered this woman in April 2022 while she was experiencing a crisis and took her to the hospital. During this interaction, one officer stated: “They could have handled that with a social worker, right?”

Similarly, our review of body-worn camera footage revealed that LMPD officers frequently escalate situations rather than de-escalate them. Officers frequently fail to give people experiencing crisis time or space, do not engage in verbal de-escalation for enough time to be successful, and shout orders rather than speaking calmly.77 Additionally, in some videos we witnessed LMPD officers rapidly surrounding individuals experiencing a behavioral health crisis with weapons drawn and failing to designate an officer to be the primary communicator. Both tactics tend to escalate rather than de-escalate the situation. In some cases, officers’ escalation of the behavioral health crisis led to increased safety risks to themselves and the person in crisis and increased the likelihood of the use of force. At other times, officers’ behavior toward people may have created the entire crisis. What we saw was confirmed more broadly by community stakeholders. For example, one service provider stated, “Things don’t end well when LMPD gets involved.”

 

Sunday, January 29, 2023

Suicide and Self-Injuiry

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. "

 At Autism, Theodoros V Giannouchos and colleagues have an article titled "Suicide and non-fatal self-injury-related emergency department visits among individuals with autism spectrum disorder."  The lay abstract:

This study used data for 14.4 million individuals with 43.5 million emergency department visits from all hospitals in the state of New York to explore the association between suicide and non-fatal self-injury-related (self-injury) emergency department visits and autism spectrum disorder. Overall, we found that individuals with autism spectrum disorder had more emergency department visits and admissions through the emergency department, more years of emergency department utilization, and higher prevalence of mental health-related comorbidities. Individuals with autism spectrum disorder were also significantly more likely to have at least one self-injury-related emergency department visit compared to those without autism spectrum disorder. These results emphasize the need to raise awareness across both family caregivers and healthcare providers on the increased suicide and self-injury risks that individuals with autism spectrum disorder face and to improve care delivery practices. In addition, effort to promote and increase timely access to mental health care is an urgent priority for individuals with autism spectrum disorder.

From the article:

Combined, our results suggest that while the high and growing suicide, and non-fatal self-injury rate in the United States is a concern for the entire population, it is a particular concern in the ASD community and notably among younger children and adolescents (Healthcare Cost and Utilization Project, 2020). Given existing documented issues for individuals with ASD in accessing needed care in a timely manner, many are forced to seek treatment from EDs that are often overwhelmed and not well equipped to address the specific needs of individuals with ASD (Muskat et al., 2015; Nageswaran et al., 2011; Nicolaidis et al., 2013). Our findings suggest that identifying ways to increase timely access to outpatient care—and mental health care in particular given the observed and increased prevalence of ED visits for mental health conditions among those with ASD which is consistent with previous work—is an urgent priority for individuals with ASD to provide continuous and supportive care and to prevent suicidal and non-fatal self-injurious attempts (Lytle et al., 2018). This is emphasized by previous work that found more than half of individuals who leave the ED after a suicide attempt never attend their first outpatient appointment (Lai et al., 2019). Increasing access to outpatient care will require policy changes to overcome both the shortage of mental health care providers in certain parts of the country as well as the large proportion of mental health care professionals who do not accept health insurance, such as expansion of virtual appointments, higher reimbursement rates, and reduced administrative and contractual complexity (Bishop et al., 2014; Thomas et al., 2009).

Wednesday, January 18, 2023

Using Strengths

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 Autism, Emily C. Taylor and colleagues have an article titled "Psychological strengths and well-being: Strengths use predicts quality of life, well-being and mental health in autism."  The lay abstract:

It is often suggested that supporting autistic people to identify and use their strengths will lead to positive outcomes. However, little research has explored if this is true. To date, no research has explored whether autistic people already have knowledge of and use their strengths, nor whether increased strengths knowledge and use is linked to good outcomes, such as a better quality of life, well-being and improved mental health. Comparing large samples of autistic and non-autistic people, this study tested these unanswered questions. We found that autistic and non-autistic people reported similar strengths, but autistic people reported less knowledge and use of their strengths compared to non-autistic people. Importantly however, autistic people who reported using their strengths often had better quality of life, well-being and mental health than autistic people who reported using their strengths less frequently. We, therefore, propose that supporting autistic people to use their strengths more often may be a valuable way to boost well-being in this population.