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 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.

Illinois Neurodiversity Initiative

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

Sharita Forrest at the University of Illinois 

Neurodivergent students who will be incoming freshmen at the University of Illinois Urbana-Champaign in the upcoming fall semester are encouraged to apply to a program geared toward helping them succeed academically, socially and professionally.

The Illinois Neurodiversity Initiative offers a variety of supports and services for students with conditions in which the brain functions, learns and stores information in atypical ways, including autism, dyslexia and attention deficit hyperactivity disorder.

INI is a comprehensive four-year program that supports neurodivergent students in achieving their highest potential in college and beyond, said program creator Jeanne Kramer, the director of The Autism Program of Illinois, the on-campus partner of the statewide TAP Service Network.

INI was launched last fall as a pilot program with an inaugural cohort of 10 students – including some sophomores – who had a variety of majors, including business and engineering.

“INI has been incredibly beneficial for our son,” said a parent of one of the students. “Before this program, we were worried he may not be ready for college. However, INI has helped him make the transition. In addition, INI has taught him a lot about who he is and what his strengths are. We are grateful to the program for helping our son become a successful college student.”

Mortality Rates

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.

 Ferrán Catalá-López and colleagues have an article at JAMA Pediatrics titled "Mortality in Persons With Autism Spectrum Disorder or Attention-Deficit/Hyperactivity Disorder: A Systematic Review and Meta-analysis."  

Key Points

Question  Are persons with autism spectrum disorder (ASD) or attention-deficit/hyperactivity disorder (ADHD) at a higher risk of dying compared with the general population?

Findings  In this systematic review and meta-analysis of 27 studies, persons with ASD or ADHD had higher mortality rates than the general population. When causes of death were examined, ASD and ADHD were associated with higher mortality due to unnatural causes (eg, injury, poisoning, and other), and only persons with ASD had an increased risk of mortality from natural causes of death (eg, neurologic, respiratory system, and cancer).

Meaning  Having ASD or ADHD may be associated with higher mortality risks.

From the article:

This systematic review and meta-analysis comprehensively assess for the first time, to our knowledge, the available evidence regarding the risk of mortality in persons with ASD or ADHD. We included 27 epidemiologic studies in our quantitative evaluation, 16 of which were judged to be at low risk of bias. We found that ASD and ADHD are associated with a significantly increased risk of all-cause mortality. However, the results should be interpreted with caution because there was evidence of heterogeneity between study estimates of the mortality risks. When we examined causes of death, ASD and ADHD were associated with higher mortality risk due to unnatural (external) causes, and only persons with ASD had an increased risk of mortality from natural causes of death, but the evidence was judged as only low confidence. Fewer studies exist examining the risk of mortality among first-degree relatives of persons with ASD or ADHD, to our knowledge.

Several mechanisms, including health determinants and biological pathways, have been suggested as potential factors that might explain the excess premature mortality among children and young persons with ASD or ADHD. However, establishing a causal relationship is difficult because the associations between mortality and childhood-onset developmental disorders are complex. Severe mental and behavioral disorders appear to be associated with reduced life expectancy, both in terms of mortality from external causes and mortality from other medical conditions or diseases.10,11 Findings from previous studies and reviews have suggested that children and adults with ASD/ADHD are associated with coexisting mental and neurologic conditions (such as oppositional and conduct disorders, tic disorders, epilepsy, depression, anxiety, and substance use disorders).3-5,57 As children and young persons with ASD/ADHD age, they often experience emotional and social difficulties.3-5 Some people also exhibit impulsive forms of behavior with negative impacts on their quality of life. Behaviors such as impulsivity and/or inattention can be contributing factors for injuries and unintentional incidents in children with ASD/ADHD.58,59

Previous studies16,17,49 have tested potential modifying effects of comorbidity on mortality risk for persons with ASD/ADHD. For example, Dalsgaard et al,16 Sun et al,17 and Schendel et al49 suggested increased mortality RRs in persons with ADHD or ASD with comorbid neurologic or mental conditions (eg, oppositional defiant disorder, conduct disorder, or substance use disorder). However, it should be noted that presence of ASD and/or ADHD with any distinct additional medical condition (the so-called comorbidity or multimorbidity) may be confounded by previous exposures (such as socioeconomic factors, environmental factors, and childhood abuse).60 Prevention efforts to reduce mortality in persons with ASD or ADHD may need to address the conditions that appear to mediate causes of death. While potentially preventable, reducing excess premature mortality (eg, due to external causes) can be challenging. For example, systematic screening would be advisable in health services and social care, and preventive education can be feasible in almost all circumstances. However, some persons with ADHD/ASD are often from socioeconomically disadvantaged groups/areas and are more likely to be exposed to environmental risk factors (eg, substance misuse, violence) than other populations.61-63 Similarly, studies64,65 have shown that persons with ADHD or ASD may be less likely to receive timely diagnosis and prompt care. All these factors are possible complications of ASD/ADHD, so the implication for practice is that health care professionals should recognize their importance.

Race and Disability Classification

In The Politics of Autism, I write about the experiences of different economic, ethnic and racial groups.   Inequality is a big part of the story. 

At Socius,  Thomas M. Skrtic, Argun Saatcioglu, and Austin Nichols have an article titled "Disability as Status Competition: The Role of Race in Classifying Children."  The abstract:

Many African American and Hispanic children are classified as mildly disabled. Although this makes special education services available to these and other children who need them, contention endures as to whether disability classification also is racially (and ethnically) biased. The authors view disability classification as status competition, in which minorities are overrepresented in low-status categories such as intellectual disability and emotional disturbance, and whites are overrepresented in high-status categories such as attention-deficit/hyperactivity disorder and autism. The authors address the racialized construction and evolution of the mild disability classification system along with mechanisms that perpetuate racial segmentation in contemporary classification. They analyze a large federal longitudinal data set (1998–2007) to examine racialization and find that classification continues to operate at least in part as a racial sorting scheme. Implications for research and policy are discussed.

From the article:

Black and Hispanic students are overrepresented in ID, ED, and LD across nearly all grades. Whites, on the other hand, are overrepresented in ADHD and autism, but in specific ways across the grade span. They appear to leverage ADHD at key transition points: before elementary school and before middle school, in each case to help with potential issues in later grades. As for autism, whites become overrepresented in it only cumulatively, meaning that autism becomes disproportionately white over time as whites switch from nonautism categories to autism across the grade span, a strategy that reduces stigma and provides new resources and services. Our findings on whitening of autism are consistent with those of Travers et al. (2014) and Travers, Tincani, and Krezmien (2013), who attributed the pattern to changes in diagnostic procedures and standards in the 2000s. But if patterns in autism are affected by changing diagnostic methods in those years, the results likely would have been the same for autism regardless of whether students had other labels prior to autism or not. This is not what we find, however.

...

IDEA, the law that regulates classification, brings coherence and a degree of monitoring and accountability to the classification process.10 But it fails to target factors sustaining racialized patterns. In Senate hearings prior to passage of IDEA’s original legislation, experts recognized that parents may be differentially equipped to exercise legal rights. Kirp, Buss, and Kuriloff (1974) argued for open IEP meetings and due-process hearings with nonprofit advocacy groups involved. These and other scholars also argued that beyond their value in maximizing the potential of individual children, parent participation and due-process rights were essential to realizing reforms for improving practice. They saw the hearings as a means to put pressure on schools to make changes. Toward that end, experts and advocates wanted results of due process cases to become broadly applied precedents. They envisioned an open, collectively advocated, and precedent-based system, leading to continuous improvement nationally through diffusion of common norms. Instead, actual IEP meetings and due-process hearings are private affairs centered on the student’s individualized educational plan (Ong-Dean 2009), subverting reform and reinforcing inequity. Our recommendation is to reappropriate the originally envisioned system as a blueprint to address IDEA’s flaws.

More recent data, however, suggest that the pattern may have changed.

Autism and Health

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

A release from Autism Speaks:

Autism Speaks today issued the first in a series of annual, in-depth reports on special topics in autism. Autism and Health: Advances in Understanding and Treating the Health Conditions that Frequently Accompany Autism gathers into one comprehensive report the most authoritative research and the latest guidelines on treatment and support of children and adults with autism spectrum disorder.

The last decade has brought tremendous advances in understanding and addressing the many physical and mental health conditions that often go hand-in-hand with autism. Those conditions include epilepsy, gastrointestinal distress (GI), sleep disturbances, eating and feeding challenges, attention deficit and hyperactivity disorder (ADHD), anxiety, depression, schizophrenia and bipolar disorder. These issues can extend across the life span.

While each new piece of high-quality research adds to our understanding of autism, it also adds to the complexity of developing the best practices to address the diverse needs of the autism community.

Health problems attributed to autism may instead be symptoms of a different condition - one that is treatable. For example:

• Children with autism are almost 8 times more likely than typical kids to have chronic GI distress. The report includes expert guidance on when to seek help for "picky eating," which could be a sign of GI problems.

• More than half of people with autism have sleep disturbances, which may contribute to daytime behavioral problems. A model parent-education program teaches autism-specific sleep guidelines.

• 30 to 60 percent of people with autism have symptoms of ADHD. Research shows that personalized treatment with cognitive-behavioral techniques adapted for autism may help.

The special report's Facts and Figures Supplement provides data on prevalence, screening and diagnosis, the cost of services and treatment, adult needs, and funding for research, among other categories.

"We now know more about autism than ever before, but each new piece of research paints an even more complex picture of the disorder," said Thomas Frazier, PhD, Autism Speaks chief science officer. "For the first time, our report pulls together the most up-to-date research on autism, and presents it in easy-to-understand terms. We hope people with autism, parents, communities, and health care providers will use this information to make the best possible decisions for their particular needs and to enhance the quality of life, now and in the future."

###
Autism and Health: Advances in Understanding and Treating the Health Conditions that Frequently Accompany Autism is available at http://www.autismspeaks.org/specialreport.

Labels

The Philadelphia Daily News is carrying an article by Charles A. Williams III, an assistant clinical professor and director of the Center for the Prevention of School-Aged Violence at Drexel University. He writes of Aaron, a bright child with an autism diagnosis.

In 2001, during the American Psychological Assn.'s annual convention, the Society of Clinical Child and Adolescent Psychology held a special panel discussion on ADHD. The experts lamented the fact that there appeared to be a tendency to "overdiagnose" and "overmedicate" children with ADHD.

Now, fast-forward to 2010 as we consider the prevalence of the diagnosis of autism given to so many children.

Is this a case of deja vu? Well, in a recent published interview, developmental neuropsychologist David Evans, of Bucknell University, stated that a parent may seek a label as way to get children the clinical and educational attention they need - and that this could lead to overdiagnosis.

How sad. Such a statement suggests that without a label, many children wouldn't get the quality support, resources and education they deserve.

And even when we do correctly diagnose, with the state of American education being what it is, can we hold out hope that Aaron may one day follow in the footsteps of a Temple Grandin, the renowned animal scientist with autism, featured in the recent award-winning HBO movie?

I don't pretend to have the answers to all these questions, but what I do know is that without them, the fate of many of our nation's most vulnerable children will continue to hang in limbo.

The ADHD Complex

This Washington Post account (h/t Fred Lynch) by the mother of an ADHD child may seem very familiar to people on the autism spectrum and their families:

Growing along with those numbers is one of the most aggressive, lucrative, bewildering and often just plain useless sales forces humanity has ever seen - call it the ADHD-industrial complex.

This includes not only the U.S. pharmaceutical industry, which by one measure sells more than $5 billion worth of ADHD medications each year - and which only in the United States and New Zealand may market directly to the public - but a growing league of all-but-unregulated, usually costly and sometimes wildly imaginative alternatives, including herbal supplements, complicated exercise regimes to stimulate specific brain regions, magnetic mattresses, personal coaches and therapy "assisted" by dolphins.

If modern mothering is madness, what metaphor might suit the straw-grasping of parents of children with this disorder, whose main symptoms are distraction, inattentiveness, forgetfulness and impulsivity? The ADHD industry's exuberance matches the vulnerability of its target market: millions of desperate parents who, given the strongly hereditary nature of ADHD, are often just as distracted and impulsive as their progeny.

The mother herself got a diagnosis of ADHD at age 50. Similarly, some parents of kids on the spectrum learn (or at least suspect) that they have HFA or AS.