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Strategic Plan Cover 2019

IACC Strategic Plan

For Autism Spectrum Disorder

2018-2019 Update

Chapter 2: IACC Working Group Activities: Improving Health Outcomes for Individuals on the Autism Spectrum

A Doctor and young boy playing with a teddy bear


During the Autism CARES Act of 2014 authorization period, the IACC voted to convene a Working Group on health and wellness issues for individuals with ASD. In response, the IACC established the Working Group: Improving Health Outcomes for Individuals on the Autism Spectrum. The Working Group, composed of IACC members and invited external stakeholders with expertise in a variety of areas, was formed to gather information, discuss issues, and develop activities and recommendations for consideration by the full IACC. The Working Group focused their efforts on identifying the challenges people on the autism spectrum face pertaining to health and general wellness, as well as co-occurring physical and mental health challenges.

Co-occurring physical and mental health conditions have been reported by the community and documented in research as an important factor that can reduce quality of life when not acknowledged, recognized, and properly addressed. Recent research findings also reveal that people on the autism spectrum have shortened lifespans because of a host of co-occurring medical conditions.1 There is a growing body of research on the co-occurring physical and mental health conditions that affect people with ASD, but further research is needed. Additionally, there is a need to address the lack of adequate healthcare services to address co-occurring health issues. Availability of trained personnel who can address health needs across the lifespan and access to healthcare services continue to present challenges in addressing these health needs.

In order to begin to address these particular needs of the autism community, the Working Group planned several activities. The Working Group met by conference call in 2018 and convened public workshops in September 2018 and May 2019. The September 2018 workshop addressed several of the most common physical health issues that are reported by the autism community as areas of concern. The workshop featured speakers who addressed the topics of epilepsy, sleep, gastrointestinal disorders, and patient-provider and healthcare services issues. In May 2019, the Working Group convened a workshop focused on the mental health issues experienced by individuals with ASD. Some of the topics discussed at the workshop included anxiety, depression, suicide, self-injurious behaviors, aggression, and mental health services. This update on the Working Group includes highlights from the September 2018 and May 2019 workshops that focused on co-occur-ring physical and mental health conditions of individuals with ASD and their health care experiences. The Working Group plans to present its findings and recommendations back to the IACC in the form of a written report for further consideration, potential adoption, dissemination, and action.

Highlights from the IACC Workshop: Addressing the Health Needs of People on the Autism Spectrum

In September 2018, the Working Group convened a work-shop to address the health and quality of life for people on the autism spectrum. The Working Group aimed to improve access to care for co-occurring physical health conditions; increase community and provider awareness of these conditions and their treatment; and facilitate the development of practice guidelines, policies, training, and service approaches to enable better patient-provider interactions and improved health outcomes across the lifespan. Six main topics were explored at the workshop:

  • Health and Healthcare for Adults on the Autism Spectrum
  • Overview of Physical and Mental Health in ASD
  • Epilepsy
  • Gastrointestinal (GI) Disorders
  • Sleep Disturbances
  • Healthcare Experiences of Children and Adults with ASD

For each topic, there were presentations on current research efforts followed by a thorough discussion of the gaps, needs, and hopes for future research and services. The workshop participants also debated potential options for the Working Group’s involvement in alleviating the challenges associated with these health conditions. The discussions of each topic are summarized below.

Health and Healthcare for Adults on the Autism Spectrum

Jeremy Parr, M.D.
Professor of Pediatric Neurodisability
Newcastle University Institute of Neuroscience

Presentation Highlights

Dr. Parr presented on his research program, the Adult Autism Spectrum Cohort-UK, which is based in the United Kingdom (UK) and aims to better understand and improve the life experiences of adults with ASD. Dr. Parr reviewed various considerations involved in conducting research on healthcare for adults with autism. These considerations included working in collaboration with individuals with autism on the development of research methods; assessing quality of life as an important outcome metric; the presence, clinical burden, and life course of co-occurring conditions; unmet clinical needs; and health accommodations. Dr. Parr highlighted that implementation science is critical for change within services, and that longitudinal studies with standardized data and protocols are important to accelerate discovery across the lifespan.

Discussion of Challenges and Desired Outcomes

The workshop participants discussed the representation of the adult ASD population in research, the aging out of individuals from pediatric care as they transition to adulthood, and the hardships experienced by individuals with autism or other disabilities who are also caregivers for a person with ASD. They also discussed incorporating feedback from individuals with autism to better inform research methodology and service development, implementing evidence-based practices for challenges in daily living, and adapting standard practices and delivery methods for healthcare services within the ASD community. Participants also considered access to care, especially in rural areas, and the need for change in Medicare/Medicaid reimbursement for health services.

A challenge mentioned in both research and clinical care was that physicians can sometimes experience difficulty completing parts of physical exams, such as blood draws or electrocardiograms, for individuals with ASD. Another challenge for young adults transitioning out of pediatric care was the lack of adult specialists with experience treating individuals with ASD. These challenges could be met by either the creation of a subspecialty or increased training and education programs for primary care physicians and specialists, such as neurologists or gastroenterologists.

Additionally, the workshop participants discussed the availability of tools to educate community providers about ASD and co-occurring conditions. There are several such tools available in the United States (US), such as Project ECHO, and the participants noted the need for a more effective dissemination and implementation plan for bringing these tools to clinicians and the public. Reward systems may help motivate primary care physicians to complete physical exams or attend specialty training programs. The workshop participants highlighted targeted implementation of evidence-based healthcare practices for people on the autism spectrum and broad dissemination of information on ASD as an overall desired outcome.

Overview of Physical and Mental Health In ASD

David G. Amaral, Ph.D.
Distinguished Professor, Department of Psychiatry and Behavioral Science, University of California, Davis (UC), UC Davis MIND Institute

(on behalf of)

Lisa Croen, Ph.D.
Senior Research Scientist, Division of Research, Kaiser Permanente Northern California
Director, Kaiser Permanente Autism Research Program

Presentation Highlights

On behalf of Dr. Croen, Dr. Amaral presented an overview of co-occurring conditions in individuals with ASD, such as obesity, seizures, sleep problems, gastrointestinal (GI) issues, and immune problems. He highlighted Dr. Croen’s work with the large health database of the Kaiser Permanente Autism Research Program, which has revealed several insights into the prevalence of co-occurring conditions and other health outcomes in the autism population. Dr. Croen’s research has demonstrated that autistic individuals experience a shorter lifespan, greater numbers of health challenges, higher utilization of healthcare due to co-occurring conditions, higher prevalence of certain health conditions, clustered health conditions, and changes in prevalence in co-occurring conditions over time. Dr. Amaral also discussed relevant research gaps to understanding and treating co-occurring conditions for individuals with ASD and challenged the Working Group to explore why individuals with ASD experience these co-occurring conditions.

Discussion of Challenges and Desired Outcomes

The workshop participants discussed various barriers in access to healthcare for individuals seeking treatment for co-occurring conditions, as well as risk factors that can lead to increased co-occurring health issues. They also discussed the difficulties in access to care experienced by individuals with ASD, often because their symptoms have been overlooked or ignored, they have co-occurring conditions with overlapping symptoms, or they have been misdiagnosed. The participants also discussed the biological, social, and behavioral factors that contribute to co-occurring conditions in ASD. Additionally, they discussed potential solutions, reviewed the potential of creating a subspecialty versus increased training in specialty practices related to common co-occurring conditions, and considered financial and insurance reimbursement structures that could improve healthcare outcomes.

A challenge in access to care for co-occurring conditions is the difficulty that some individuals with ASD face when communicating their symptoms and healthcare needs, due to social, verbal, and/or executive function issues. There is also a significant problem of clinician inexperience in working with individuals with autism. The participants noted the need to develop an improved approach among physicians to overcome the communication problems and other challenges that create barriers to care, and to develop the accommodations needed to improve quality of care. Increased funding for research from genetic and patho-physiological perspectives could improve understanding of co-occurring conditions, identify subtypes, and reduce misdiagnoses. The workshop participants discussed the need to consider different models of technical assistance and training to support clinicians unfamiliar with ASD and related health issues.

Epilepsy In Individuals with ASD

Gregory Barnes, M.D., Ph.D.
Director, University of Louisville Autism Center
Associate Professor, Child Neurology, Department of Neurology, University of Louisville School of Medicine

Sarah Spence, M.D., Ph.D.
Co-Director, Autism Spectrum Center, Boston Children’s Hospital
Assistant Professor of Neurology, Harvard Medical School

Presentation Highlights

Dr. Barnes summarized the shared genetic and neurobio-logical mechanisms of epilepsy and ASD. He also reviewed the characteristics of seizures across the lifespan and the co-occurrence of intellectual disabilities in this population.

Dr. Spence discussed the epidemiology of epilepsy with ASD, reviewing the prevalence across age groups and other clinical conditions that overlap with epilepsy and autism. She discussed the higher mortality rates in individuals with autism and epilepsy, the risk differences between sexes, and how epilepsy affects different autistic behaviors. She reviewed treatment options for epilepsy and suggested that, since autism and epilepsy are most often studied separately, better integration of the two would help improve understanding and treatment.

Discussion of Challenges and Desired Outcomes

The workshop participants discussed the contributions of sex, family history, parental IQ, and social determinants in the development of epilepsy in individuals with ASD. Additionally, the participants discussed the effect of anti-seizure medications on ASD behaviors and the challenges in treating multiple health issues at once. Better behavioral supports may help individuals with ASD become more comfortable with clinical assessment, treatment, and research protocols. Another challenge is a lack of data on ASD with co-occurring epilepsy because the two are often studied separately by researchers. Integrated research efforts for both epilepsy and autism would be valuable for improved understanding and outcomes. The participants also discussed existing and emerging technologies to assess and treat seizures. The cost of these technologies may be prohibitive for many families; the participants discussed the need to advocate for reimbursement of these interventions.

ASD and Gastrointestinal (GI) Disorders

Timothy Buie, M.D.
Attending Physician, Division of Gastroenterology, Hepatology and Nutrition, Boston Children’s Hospital Assistant Professor of Pediatrics, Harvard Medical School

Presentation Highlights

Dr. Buie presented on the history of research and the current state of science on GI disorders in autism. He reviewed past hypotheses on GI issues in autism, including theories on gluten, casein, enterocolitis, intestinal inflammation, and immune disruption. Recent research has more closely investigated the role of inflammation, immune response, intestinal permeability, and microbiota disruption. Dr. Buie talked about challenges that families face with feeding and food restrictions, and the need to consult with a gastroenterologist to assess and treat symptoms.

Discussion of Challenges and Desired Outcomes

The workshop participants discussed research on the impact of the microbiome on the brain, the genetic factors that impact the GI tract and ASD, oxidative stress, and serotonin regulation related to gut sensitivity. They also discussed the correlations between issues such as sensory sensitivity or anxiety and GI issues. They reviewed the efficacy and long-term safety of treatment options, and they discussed the difficulties that individuals with ASD often face in accessing specialty GI care.

One challenge identified by the participants was that individuals with ASD and their families have difficulty finding educational and clinical resources related to GI issues. Another challenge is that recent research findings are promising, but still emerging, and may take years to transition to practice. Additionally, there is not currently enough data on the effects of long-term use of current GI treatments for individuals with ASD.

The workshop participants suggested that guidance about standard GI care practices would be helpful for individuals with autism who have GI issues and may need additional clinical supports. Continued research into the mechanisms of GI issues in autism may result in novel treatments that may be safer and more effective than current treatments.

ASD and Sleep Disturbances

Beth Ann Malow, M.D., M.S.
Burry Chair in Cognitive Childhood Development, Professor of Neurology and Pediatrics,
Vanderbilt Kennedy Center Director, Vanderbilt Sleep Disorders Division

Presentation Highlights

Dr. Malow summarized research on sleep issues in individuals with ASD and considerations for assessment and treatment. She reviewed a case study of a boy with autism who experienced multiple sleep issues at once, and she presented a systematic approach for identifying the underlying problems and a treatment approach for improved sleep. She also discussed research on melatonin levels in children with ASD and noted that not all sleep issues in autism are related to melatonin deficiency. Dr. Malow provided recommendations and tools to assess sleep problems for individuals with ASD and proposed several actions that the Working Group could take in addressing sleep issues.

Discussion of Challenges and Desired Outcomes

The workshop participants discussed concerns about the use of melatonin during puberty, and the need for additional research to understand medical and biological causes of sleep issues among individuals with ASD. They also talked about sleep issues across the lifespan, the potential for sleep problems to be misdiagnosed as other psychiatric conditions, and case studies of more rare sleep issues in ASD such as REM sleep behavior disorder or dramatically short sleepers. They discussed the effect of cortisol on waking and daytime sleepiness, the cycle of not being able to fall or stay asleep and excessive daytime sleepiness, and the impact that sleep issues may have on employment. Finally, they reviewed co-occurring conditions alongside sleep-related issues that would be beneficial to research, such as GI problems, anxiety, sleep medications, and developmental differences.

One challenge identified is that many individuals with ASD already practice basic sleep hygiene yet still experience sleep issues, and their medical providers often do not offer more targeted guidance. Sleep issues may be caused by multiple factors, and it may be difficult to identify a root cause and effective treatment. Another challenge is that there is not enough data on the long-term use of melatonin or the use of alternative medications to improve sleep outcomes in the autism population. Additionally, there is an incomplete understanding of the underlying drivers of sleep problems in autism.

Participants advocated for expanded research efforts to understand underlying drivers of sleep problems, sleep issues over the life cycle, and how functions such as circadian clock gene activity differ in individuals with autism. There are opportunities to expand existing research efforts and leverage current data resources, such as the Simons Foundation’s SPARK study.

Healthcare Experiences of Children and Adults with ASD

Micah Mazurek, Ph.D.
Associate Professor of Education, Curry School of Education, University of Virginia

Christina Nicolaidis, M.D., M.P.H.
Professor and Senior Scholar in Social Determinants of Health, School of Social Work, Portland State University
Adjunct Associate Professor, Division of General Internal Medicine, Oregon Health and Science University

Dora Raymaker, Ph.D.
Research Assistant Professor, Portland State University
Co-Director, Academic Autism Spectrum Partnership in Research and Education (AASPIRE)

Presentation Highlights

Dr. Mazurek discussed the healthcare experiences of children with autism, discussing the negative impact of multiple co-occurring conditions on functioning, finances, daily life, and families and caregivers. She discussed research demonstrating that children with autism experience worse access to care, more costly care needs, uncomfortable care environments, and communication and sensory difficulties during clinical visits. She reiterated the importance of expanding clinical training and education for primary care providers, especially given that there are a limited number of specialists available. Dr. Mazurek also discussed her work with Project ECHO to explore telehealth approaches for autism and its potential for future implemen-tation across more sites.

Drs. Nicolaidis and Raymaker presented on the healthcare experiences of adults with autism, discussing their work on the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) and with Kaiser Permanente to better understand unmet healthcare needs, healthcare utilization, and patient satisfaction. They summarized their study outcomes showing significantly low clinician confidence in treating adults with autism and little planning to pursue additional training, despite high willingness to accept an adult with autism into the practice. They discussed the specific barriers to healthcare for adults with autism, including high costs, anxiety, difficulty processing information quickly, and sensory and communication issues. They also discussed challenges in developing and implementing specialty training for the clinical care of people with autism. Finally, they reviewed their Autism Healthcare Accommodation Toolkit, a tool for individuals with autism to complete for their healthcare providers that could improve clinical visits.

Discussion of Challenges and Desired Outcomes

The workshop participants discussed the potential cost and effectiveness of genetic testing towards advocating for more specific treatment approaches, and the intersectionality of health and employment. They talked about the challenges experienced by the transition-aged ASD population, the need for physician continuing education programs with ASD-related content, and approaches for increasing clinician motivation with regard to working with adults on the autism spectrum. Another challenge noted is the reliance on self-reporting in healthcare and healthcare research, which may result in research outcome errors or clinical inaccuracies due to communication difficulties faced by some individuals with ASD.

The financial burden of healthcare in autism is a substantial challenge, especially for families in rural areas and families with children who have significant health issues. Concepts such as concierge care, though potentially helpful for some, may also increase health disparities. There is a general lack of representation of different minority, socioeconomic, and rural populations in autism research. Future research efforts in healthcare for people with autism should focus on including hard-to-reach or otherwise marginalized populations. Better understanding of the social determinants of health outcomes in autism could improve assessment and treatment effectiveness.

The participants also discussed the utilization and effectiveness of different clinical educational approaches; the development of simple tools such as decision trees, checklists, or short quizzes; and lessons learned from other models of clinical education. The workshop participants noted that training and education tools for healthcare providers should be developed with feasibility and sustain-ability in mind and future efforts should focus on practical implementation of health services.

Highlights From the IACC Workshop: Addressing the Mental Health Needs of People on the Autism Spectrum

In May 2019, the Working Group convened a workshop to address the mental health needs of people on the autism spectrum. The workshop agenda included discussion of community stakeholders’ experiences with mental health issues and services, premature mortality related to mental health issues, and parental and family mental health, among other concerns raised by participants at the workshop. Six main topics were explored:

  • Mental Health Needs of People on the Autism Spectrum
  • Personal Perspectives on Mental Health Issues in ASD
  • Anxiety and OCD
  • Depression and Suicide
  • Self-Injurious Behaviors (SIB) and Aggression
  • Mental Health Services for People on the Autism Spectrum

For each topic, there were presentations on current research efforts followed by a thorough discussion of the gaps, needs, and hopes for future research and services. The workshop participants also debated potential options for the Working Group’s involvement in alleviating the challenges to these health conditions. The discussions of each topic are summarized below.

Mental Health Needs of People on the Autism Spectrum

Carla Mazefsky, Ph.D.
Associate Professor of Psychiatry and Psychology, University of Pittsburgh

Presentation Highlights

Dr. Mazefsky presented an overview of mental health issues in people with ASD. She explained that individuals with ASD are more likely to have co-occurring mental health disorders, and that as a result they, their families, and the community often experience challenges such as distress, high health care utilization, barriers to school and workplace success, and disciplinary actions. However, service delivery to address these needs is inhibited by providers with a limited understanding of ASD and its associated lifespan implications. Dr. Mazefsky recommended three ways to address these issues: first, to create more sensitive diagnostic assessments for identifying co-occurring mental health conditions; second, to design more effective and targeted treatments for mental health in autism; and third, to seek fresh perspectives on risk and vulnerability of developing co-occurring mental health conditions.

Discussion of Challenges and Desired Outcomes

The workshop participants discussed the role of trauma in cognitive changes and emotional dysregulation among children and adults with ASD. Specifically, they noted that although genetics plays a role in mental health issues, social issues such as bullying and adversity that affect individuals with disabilities may also be contributing factors.

The participants also highlighted the importance of con-sidering positive aspects related to autism rather than focusing only on perceived negative aspects. This could facilitate expanding research beyond conditions such as depression to include broader issues, such as resilience, temperament, and mindfulness.

Workshop participants discussed ways to improve provider awareness of issues related to autism and mental health. Although providers do not need to be experts in autism to treat this population, they need to be familiar with the challenges that children and adults with ASD face in order to best deliver services and interventions. The participants suggested that providers could consider ASD co-occurring mental health conditions in the context of more familiar issues and populations, such as treating anxiety or PTSD in veterans. They also noted that there is a critical need for longitudinal studies to understand the trajectory of co- occurring mental health symptoms and their early predictors, allowing researchers to design treatments aimed at early prevention.

The participants concluded that there is a lot to learn from mainstream mental health practices, which should be considered for both research and application in individuals with ASD. In parallel, the Working Group has significant potential to contribute knowledge about autism to mainstream awareness of these issues.

Personal Perspectives on Mental Health Issues In ASD

Lindsey Nebeker
Development Specialist, Autism Society of America, Freelance Presenter/Speaker

Dennis Mashue
Co-Founder, Tuck’s Tooques, LLC
Founder, OuterSelf Initiatives

Alison Morantz, JD, Ph.D.
James and Nancy Kelso Professor of Law
Director of the Stanford Intellectual and Developmental Disabilities Law and Policy Project
Senior Fellow and Steering Committee Member, Stanford Institute for Economic Policy Research

Presentation Highlights

Three individuals provided their personal perspectives on managing ASD and co-occurring mental health issues. Ms. Nebeker, an autistic self-advocate, shared her personal story of the challenges of co-occurring mental health conditions and her experience with issues related to suicide. She discussed the need for community members to prioritize treating each other with kindness and providing support for people who are struggling with mental health conditions.

Mr. Mashue is an autistic self-advocate and the father of a son with ASD who is minimally verbal. He spoke about the difficulties he has experienced in obtaining Medicaid services for his son, which has led to financial hardships and exacerbated mental health issues. He urged the Working Group to engage with the community, focusing on supporting adults with autism and caregivers.

Ms. Morantz is a professor at Stanford Law School and mother to a child with autism and early-onset schizophrenia. Ms. Morantz discussed the critical need for individualized supports, inpatient treatment, and residential living options for children with autism who experience co-occurring mental illness, as well as an increase in training and over-sight of health professionals.

Discussion of Challenges and Desired Outcomes

The workshop participants agreed that these personal perspectives were compelling and that the challenges and barriers that were highlighted are critical to consider. They also emphasized the importance of considering the potential impact of mental health issues on attainment of services and supports and, as a result, workplace opportunities.

Anxiety and OCD with ASD

Connor Kerns, Ph.D.
Assistant Professor, Department of Psychology, University of British Columbia

Judy Reaven, Ph.D.
Associate Professor, Departments of Psychiatry and Pediatrics, University of Colorado Anschutz Medical Campus

Presentation Highlights

Dr. Kerns discussed the common co-occurrence of anxiety disorders and/or obsessive-compulsive disorder (OCD) in the ASD population, diagnoses which are often overlooked because symptoms frequently overlap with autism-related behaviors. She noted that when anxiety disorders are co-morbid with ASD, they are commonly associated with a severe clinical profile that includes additional problems with social skills, repetitive and restricted behaviors, depression, and self-injury, sleep problems, and GI disturbances. Dr. Kerns noted the significant barriers to researching and diagnosing these conditions, including communication barriers and a lack of mental health measures tailored specifically for this population.

Dr. Reaven discussed treatment for anxiety in individuals with ASD; she noted that many individuals with ASD use cognitive behavioral therapy (CBT) to treat anxiety symptoms. A variety of CBT-based treatments for anxiety and OCD are available across different ages, settings, and individual needs, although more research is needed to continue to tailor these services to autistic individuals. Medication (such as sertraline) is a commonly used treatment approach for anxiety in the general population, but there is still a need to study anxiety medications in the ASD population. Dr. Reaven recommended that future funding efforts focus on implementation science for anxiety treatments, applying research in clinical settings, understanding anxiety and ASD in underserved groups, and developing telehealth approaches (such as iPad applications and virtual reality).

Discussion of Challenges and Desired Outcomes

The workshop participants addressed challenges related to sensory responses and anxiety in individuals with ASD; some data suggest that sensory issues may be predictive of problems with anxiety later on. Participants considered the need to improve strategies for reducing anxiety and/or OCD symptoms in real-life settings. They noted that application-based research may be particularly useful in helping people with autism build coping and compensatory strategies. The workshop participants also discussed the need to promote awareness about high rates of anxiety in the ASD community to ensure that early anxious tendencies are prevented from developing into maladaptive behaviors.

Depression and Suicide In ASD

Katherine Gotham, Ph.D.
Assistant Professor, Department of Psychiatry and Behavioral Sciences, Vanderbilt University Medical Center

Anne Kirby, Ph.D., OTR/L
Assistant Professor, Occupational & Recreational Therapies, University of Utah

Darren Hedley, Ph.D.
Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University

Sarah Cassidy, Ph.D.
Assistant Professor, School of Psychology, University of Nottingham

Presentation Highlights

Dr. Gotham presented a summary of her research on depression in autistic individuals. She noted that people with ASD are four times more likely to experience depression than the general population, which can further impair their social skills and adaptive behaviors. Because common depression symptoms (such as flat affect and social withdrawal) may be overshadowed by overlapping ASD features, assessing and diagnosing depression in the ASD population can pose significant challenges. People with ASD may be more likely to experience depression because they tend to be less socially connected and they often struggle with repetitive thinking patterns, which can trap them in negative thought cycles. Dr. Gotham also discussed cognitive behavioral therapy and medications as successful interventions for depression in the general population, and with appropriate modifications—based on tailored measurement tools and research studies—they may also be useful for people with ASD.

Dr. Kirby reviewed current research on suicide in the ASD population, which currently suggests that people with autism in the United States are six to eight times more likely to attempt or die by suicide. Differences in suicide rates are especially pronounced among girls and women; autistic women are three times more likely to die by suicide than their non-autistic female counterparts. In the general population, men are at much higher risk of dying by suicide than women, but in the ASD population the rates tend to be more similar among autistic males and females. Suicide death is still relatively rare and is only one consideration in terms of quality of life for people with ASD. However, there is a need to study the risk factors and co-occurring conditions associated with suicidality in the ASD population, especially for women and other vulnerable subgroups, such as older adults and those without intellectual disability.

Dr. Hedley discussed the relationship between autistic traits and suicide risk, as well as common mechanisms that underlie suicide risk and autism. Current research indicates that an autism diagnosis independently predicts suicide risk, while depression, high IQ, and level of satisfaction with living arrangements are potential predictors of suicide in individuals with ASD. Additionally, autistic people, especially those whose autism is more severe, often experi-ence isolation, disconnectedness, and loneliness—factors that may significantly contribute to suicidality. Studies have found that successful social supports can mediate the effects of depression in people with ASD, decreasing loneliness and suicidal ideation.

Dr. Cassidy reviewed ideas for the future of research and prevention of suicide in ASD and, more generally, mental health. Currently funded research priorities often do not align with what people with ASD think is important, and it is important to directly consult people with ASD before developing priorities. Since 2016, Dr. Cassidy has managed a series of national (in the United Kingdom) and interna-tional data-gathering activities and workshops to engage individuals with ASD and their families about suicide in collaboration with researchers and stakeholders in the ASD community. During these initial workshops, participants identified topics of importance to them; these suggestions were used to develop a top ten priority list for research. Identifying barriers to services and supports, a topic that has been consistently under-funded, was named the top priority for research to prevent suicide in people on the autism spectrum, as difficulty accessing appropriate services and supports is thought to be a contributing factor to suicidality in this population. She concluded by encouraging researchers to work with people with autism to ensure that community priorities and research priorities are aligned.

Discussion of Challenges and Desired Outcomes

Workshop participants discussed stories related to traumatic events, misdiagnosis and delayed diagnosis, and misunderstandings of autism that can contribute to depression and other mental health problems. Sleep disturbances, which are common in people with autism, is another critical factor in understanding the relationship between depression and suicide in ASD. Because these problems can be difficult to manage alone, many people with autism report a need for a services system navigator.

The workshop participants discussed common warning signs for depression and suicide, and how these signs differ in autistic individuals compared to the general population. There is a critical need to be watchful for conventional signs—both verbal and non-verbal, such as sleeping a lot or losing interest in activities—even when the person with autism doesn’t specifically communicate about suicide. Some people with autism may under-report their struggles because they fear being institutionalized. The participants discussed issues related to employment and employment-related stress, which may be linked to suicidality in people with ASD. More research is needed to determine the association between mental health and jobs in this population.

Currently, there is a lack of validated tools for assessing suicidality in ASD, and many existing studies have only used surveys developed by individual clinics. Current data indicates that only a small portion of those who died by suicide had a clinical event or measure of previous suicidal ideation in their clinical record.

Self-Injurious Behaviors and Aggression In ASD

Matthew Siegel, M.D.
Director, Autism & Developmental Disorders Inpatient Research Collaborative (ADDIRC), Maine Medical Research Institute; Vice President Medical Affairs, Developmental Disorders Service, Maine Behavioral Healthcare

Craig A. Erickson, M.D.
Director, Fragile X Research and Treatment Center, Medical Director, Psychiatry Neurobehavioral Continuum of Care, Director of Research, The Kelly O'Leary Center for Autism Spectrum Disorders, Cincinnati Children's Hospital Medical Center

Presentation Highlights

Dr. Siegel discussed current research opportunities and gaps in self-injurious behaviors and aggression in autism. Families report that aggression and self-injury can be more impactful than other autism-related symptoms, because these behaviors are often associated with increased stress, isolation, and financial burden. Aggression and self-injurious behaviors also tend to limit the child’s development because they can no longer attend school or engage with non- specialized support systems. Common treatment options include ABA and psychotropic medication, but most of these options lack a strong evidence base, tend to be time-intensive, and have inconsistent outcomes. Dr. Siegel’s current research has shown that physiological arousal (such as increased heart rate) can predict an aggressive episode with 80 percent accuracy, which is particularly important when the child is unable to communicate this information his/herself. However, more research is needed to better understand the mechanisms and to develop better diagnostic tools and treatments.

Dr. Erickson reviewed medication management for aggres-sion and self-injurious behaviors, recommending medication use as a secondary intervention to evidence-based behavioral interventions or in combination with these interventions. Currently, there are two FDA-approved medications—risperidone and aripiprazole—for the treatment of irritability, which is defined by the FDA as aggression, self-injurious behaviors, and severe tantrums. Although effective in reducing aggressive behaviors, these medications are known to have undesirable side effects, such as abnormal movements and significant weight gain. Some alternative medications have demonstrated less severe side effects, such as less weight gain, but there is not yet enough scientific evidence to support greater use among individuals with ASD. Dr. Erikson noted that electroconvulsive therapy (ECT) is a last-resort approach that can be used when other interventions fail.

Discussion of Challenges and Desired Outcomes

The workshop participants discussed the role of ECT in treating aggressive and self-injurious behaviors, expressing the importance of overcoming stigmas related to this potential treatment. They also discussed the underlying mechanisms of medication-related weight gain, which are not known but may be related to increased appetite or changes in metabolism. Additionally, the participants discussed de-escalation strategies that can be applied in the moments before an aggressive episode occurs, which can include breathing exercises or going to a quiet space.

Lastly, participants debated the use of wearable sensors to identify physiological arousal in order to predict an aggressive episode and how these tools are not useful unless paired with an intervention to prevent or de-escalate the episode.

Mental Health Services Issues for People on the Autism Spectrum

Brenna B. Maddox, Ph.D., LCP
Post-Doctoral Fellow and Licensed Clinical Psychologist, Penn Center for Mental Health, University of Pennsylvania

Presentation Highlights

Dr. Maddox reviewed the main barriers to mental health services among people with autism, as well as possible solutions. Common barriers include insufficient clinician training, lack of ASD-specific treatment designs, and historical difficulties accessing mental health care as a result of chasms between developmental disability systems and mental health systems. Some possible solutions include clinician training, which is needed at the pre-service level and should be offered to providers of both adult and child services. Community-academic partnerships may also be useful in ensuring that individuals with ASD have access to evidence-based services and supports. Finally, coordination between mental health and developmental disability systems may begin to bridge existing gaps that can contribute to service barriers in the ASD population.

Discussion of Challenges and Desired Outcomes

The workshop participants discussed the problem that many providers lack confidence and/or knowledge in treating co-occurring mental health conditions in people on the autism spectrum, often adding more obstacles for individuals with autism and their family members. In addition, participants discussed modular treatment approaches that may be effective for broader implementation across diagnoses and age ranges; these approaches may help to ensure continuity of access to services across the lifespan. The workshop participants debated the potential benefits and drawbacks of having separate State agencies for health services (e.g., develop-mental disability services and mental health services).

Also, because autism and mental health issues have significant overlap, workshop participants recommended other federal advisory committees such as the Interdepart-mental Serious Mental Illness Coordinating Committee (ISMICC) that may be able to contribute to the ongoing conversation about autism and mental health.


The IACC recognizes that physical and mental health concerns are major factors in the quality of life of people on the autism spectrum. There are many physical and mental health needs within the autism community that are currently not adequately met due to lack of research and practical understanding of the relationship of these conditions with ASD, inadequacy of current treatments, lack of an adequate number of medical personnel with un-derstanding of ASD, and challenges within the healthcare system. The Committee recognized these concerns by implementing an objective in the 2016-2017 IACC Strategic Plan directed at improving the understanding of co-occur-ring conditions associated with ASD as well as forming a Working Group to address the challenges and barriers in research and healthcare services.

The Working Group held workshops in 2018 and 2019 in which the participants identified several ideas that could improve ASD research efforts in understanding the root causes of co-occurring physical and mental health issues, accelerate development of effective treatments across the spectrum and across the lifespan, and improve healthcare services for people on the autism spectrum, such as physician education and development of best practices in healthcare, toolkits, and training approaches. The Working Group is using the information gathered in these workshops to develop a summary document to describe the state of research on co-occurring physical and mental health conditions in ASD, current treatments and guidelines, challenges in delivering healthcare to this population in a way that addresses these needs, and future directions for research, services, and policy. This information will be reviewed by the IACC and, upon completion and approval, published and shared with the public at a future meeting of the IACC.


  1. Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2016). Premature mortality in autism spectrum disorder. The British Journal of Psychiatry, 208(3), 232-238.

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