Abstract
Objective
To identify correlates of deliberate self-harm (DSH) in youth with autism and/or intellectual disability (ID).
Method
This retrospective longitudinal cohort analysis used claims data for youth ages 5 to 24 years continuously enrolled in Medicaid in a midwestern state for 6 months and diagnosed with autism and/or ID between 2010 and 2020 (N = 41,230). Cox proportional hazards regression examined associations between demographic and clinical variables and time to DSH for study cohorts with autism and/or ID.
Results
Autism was diagnosed in 34.3% of the sample, ID was diagnosed in 30.6%, and both autism and ID were diagnosed in 35.1%. Sample youth were predominantly male (73.4%) and had an internalizing (74.8%) or externalizing (62.1%) mental health condition. At least 1 DSH event was identified for 734 youths (2.6%) with autism and 686 youths (2.7%) with ID during follow-up. Increased risk of DSH was associated with older age; female sex; history of abuse or neglect; and co-occurring externalizing problems, internalizing problems, substance use, and thought problems for the autism cohort and ID cohort and with the presence of a chronic complex medical condition in the autism cohort. Risk of DSH was significantly lower for youth with moderate ID and youth eligible for Medicaid via disability and foster care.
Conclusion
Risk factors for DSH in youth with autism and ID are similar to those in neurotypical youth and include increasing age, trauma, mental health conditions, substance use, and female sex. Clinician and consumer education regarding suicide risk and its correlates in youth with autism and ID warrants study.
Key words: autism, intellectual disability, self-injurious behavior, suicide
Plain language summary
This study of youth aged 5 to 24 enrolled in Ohio Medicaid found that 2.6% of youth with autism and 2.7% of youth with intellectual disabilities (ID) had at least one deliberate self-harm (DSH) event between 2010 and 2020. Youth who were older, female, had a history of abuse or neglect, and had co-occurring externalizing, internalizing, substance use, or thought problems, had increased risk for DSH. Risk of DSH was lower for youth with moderate ID and those eligible for Medicaid via disability and foster care.
Suicide is a disproportionate source of mortality in young people and the second leading cause of death in youth ages 10 to 24, with youth suicide rates increasing more than 50% over the past 2 decades.1 Autism and intellectual disability (ID) are common neurodevelopmental conditions, each with a prevalence of 1% to 3% in the pediatric population.2,3 Large psychiatric epidemiological studies and psychological autopsy studies of suicide have often overlooked or failed to include individuals with autism and/or ID; however, a heightened risk of suicidal thinking and behaviors, as well as death by suicide, has been identified among individuals with autism4, 5, 6, 7, 8, 9 and ID10, 11, 12 though some studies suggest no risk difference or reduced suicide risk in association with ID.13,14 Individuals with autism and ID also appear to be overrepresented among patients presenting in emergency department settings with suicidal thinking or self-inflicted injury.15 Clinically discerning whether an act of deliberate self-harm (DSH) is the consequence of a suicide attempt or nonsuicidal self-injury can be challenging in children and adolescents with autism and ID.16
Neurodevelopmental conditions often become manifest during the early child development period and are characterized by differences in brain processes that affect personal, social, academic, or occupational functioning.17 ID is characterized by limitations in adaptive functioning and a score of approximately 70 or below on standardized IQ testing.17 Approximately 85% of youth with ID are classified with mild ID, with declining proportions of ID youth being classified as having moderate (10%), severe (5%), or profound (<1%) ID. Autism is characterized by differences in social communication and interaction across multiple contexts, along with heightened sensitivity to sensory stimulation and restricted or repetitive patterns of behavior, interests, or activities.17 Autism and ID are typically lifelong conditions and often co-occur, with approximately 20% to 30% of youth with autism also meeting criteria for ID. An inverse relation between IQ and the risk of mental health conditions was recognized in the Isle of Wight study, which identified ID in 2.5% of the general population of children on the Isle of Wight.18 Subsequent research has also associated both autism and ID with an elevated overall mortality risk relative to that of neurotypical individuals and confirmed findings of a greater likelihood of experiencing mental health conditions, physical health conditions such as epilepsy and cerebral palsy, and adverse childhood experiences and life events such as bullying.9,11
Although research has identified risk and protective factors for youth suicide and suicidal behavior in general pediatric populations that include demographic and clinical risk factors such as mental health conditions and physical health conditions, particularly those directly affecting the brain such as epilepsy, sleep problems, adverse life events, and social isolation,19, 20, 21 the correlates of suicide risk in young people with autism and/or ID have been less well studied. Consequently, the goal of the present study was to examine correlates of DSH, defined as nonsuicidal self-harm and suicide attempts, in a publicly insured sample of youth with autism and/or ID to better understand the impact of risk and protective factors and inform targeted suicide prevention efforts.
Method
Study Design and Cohort
A retrospective longitudinal cohort design was used to examine factors associated with DSH among youth with autism and/or ID. The study population included all youth between the ages of 5 and 24 years who had at least 1 inpatient or 2 outpatient claims for autism (ICD-9-CM codes: 299.00, 299.01; ICD-10-CM codes: F84.0, F84.5) or ID (ICD-9-CM codes: 317-319; ICD-10-CM codes: F70-F79) between January 1, 2010, and December 31, 2020, and were continuously enrolled in Medicaid for at least 6 months during the same period (N = 41,230). Youth were followed from the beginning date of the first period of at least 6 months of continuous Medicaid enrollment between January 1, 2010, and December 31, 2020, until the outcome of interest (DSH), loss of Medicaid enrollment, age 25, death, or December 31, 2020 (the end of the study period), whichever came first. The study population was dichotomized into 4 age groups in 5-year blocks: 5-9, 10-14, 15-19, and 20-24 years. These groupings were chosen to reflect elementary school age children, intermediate/middle school age or early adolescence youth, high school age or late adolescence youth, and post–high school young adults. All procedures were approved by the Nationwide Children’s Hospital Institutional Review Board.
Data Sources
Data for this study were abstracted from Medicaid claims and death certificate files from a large midwestern state. Medicaid claims data included information regarding eligibility status (eg, monthly enrollment in Medicaid and enrollee demographic characteristics) and paid claims for inpatient and outpatient services (eg, dates of service, procedure codes, and diagnosis codes). Death certificate data were merged with Medicaid data using a matching algorithm from prior research.22,23 The claims included physician visits, hospitalizations, and any service dates as well as ICD-9-CM and ICD-10-CM codes.
Measures
Outcome
The primary outcome of interest was the first DSH claim during follow-up (Table S1, available online, lists ICD-9-CM and ICD-10-CM codes).
Demographic and Clinical Factors
Demographic factors included age (ranges 5-9, 10-14, 15-19, and 20-24 years), sex (female or male), race/ethnicity (non-Hispanic White; non-Hispanic Black; Hispanic; and other, including American Indian/Alaska Native, Asian, multiple races, Pacific Islander/Native Hawaiian, and unknown race, Native American), county of residence (metropolitan or nonmetropolitan), and initial Medicaid eligibility status (disability, foster care/adoption, and poverty). Mandatory Medicaid eligibility is conferred by living in a low-income family or by receiving Supplemental Security Income; also, children in foster care who do not fit within either mandatory eligibility category are eligible for Medicaid.
Clinical characteristics were identified through the presence of at least 1 claim with a relevant diagnosis code (Table S2, available online) during the study period and included the following psychiatric conditions: internalizing problems (eg, depressive disorders, anxiety disorders), externalizing problems (eg, ADHD, conduct disorders), substance use disorders, and psychosis or other thought problems (see Table S1, available online, for ICD-9-CM and ICD-10-CM codes). The Pediatric Medical Complexity Algorithm was used to identify youth who had chronic noncomplex or chronic complex medical conditions.24,25 A variable identifying co-occurring ID was included for the cohort of youth with autism, and a variable identifying co-occurring autism was included for the cohort of youth with ID. ID was classified as the most severe diagnosis code during the Medicaid enrollment period and categorized as none, mild, moderate, severe, profound, or other. Abuse and neglect were identified through the presence of at least 1 claim with relevant codes.
Statistical Analysis
Descriptive statistics, including overall counts and relative frequencies, were calculated separately for the entire sample, for youth with autism, and for youth with ID. Associations between demographic and clinical factors and time to DSH were examined using Cox proportional hazards regression. We fit separate models for the cohort of youth with autism and the cohort of youth with ID. Age; co-occurring internalizing problems, externalizing problems, substance use, or psychosis and other thought problems; co-occurring medical conditions; and abuse and neglect were treated as time-varying covariates. Age increased by 1 year at the beginning of each birth month as day of birth was not provided, allowing participants to move into higher age groups when appropriate. All other time-varying covariates were defined as present for a participant from the date of the first observed instance during the study period until study end. We evaluated the proportional hazards assumption using both proportional hazards tests and graphical diagnostics based on scaled Schoenfeld residuals. Although the proportional hazards assumption was violated for age in both the sample of youth with autism and the sample of youth with ID, we present main effects only. Our large sample size had high power to detect proportional hazards assumption violations, and the interaction of age with time had limited clinical meaning due to the small variation; interaction results are presented in Table S3, available online. We present hazard ratios (HRs) and their associated 95% CIs for both unadjusted and adjusted analyses. We performed all statistical analyses using R version 4.2.2 (R Foundation for Statistical Computing, Vienna, Austria; https://www.r-project.org/).
Results
Sample Description
The total sample included 41,230 participants (Table 1). More than two-thirds (n = 29,001; 70.3%) were diagnosed with autism, nearly two-thirds (n = 27,054; 65.6%) were diagnosed with ID, and slightly more than one-third (n = 14,825; 36.0%) were diagnosed with both conditions. Participants were predominantly male (73.0%), between ages 5 and 9 years at the beginning of the first eligible Medicaid enrollment period (70.9%), non-Hispanic White (67.3%), living in a metropolitan county (79.2%), and eligible for Medicaid due to poverty (62.0%). Compared with youth with ID, youth with autism were more often male (79.3% vs 68.9%), younger (ages 5-9 years: 71.4% vs 65.5%), and eligible for Medicaid due to poverty (63.6% vs 53.2%).
Table 1.
Demographic and Clinical Characteristics of Medicaid-Enrolled Youth Diagnosed With Autism or Intellectual Disability, 2010-2020
| Total sample (N = 41,230) |
Autism cohort (n = 29,001) |
Intellectual disability cohort (n = 27,054) |
||||
|---|---|---|---|---|---|---|
| n | (%) | n | (%) | n | (%) | |
| Sex | ||||||
| Female | 11,143 | (27.0) | 6,012 | (20.7) | 8,410 | (31.1) |
| Male | 30,087 | (73.0) | 22,989 | (79.3) | 18,644 | (68.9) |
| Age range, y | ||||||
| 5-9 | 29,247 | (70.9) | 20,709 | (71.4) | 17,726 | (65.5) |
| 10-14 | 6,966 | (16.9) | 4,786 | (16.5) | 5,239 | (19.4) |
| 15-19 | 3,957 | (9.6) | 2,806 | (9.7) | 3,273 | (12.1) |
| 20-24 | 1,060 | (2.6) | 700 | (2.4) | 816 | (3.0) |
| Race/ethnicity | ||||||
| Black, non-Hispanic | 9,164 | (22.2) | 5,861 | (20.2) | 6,274 | (23.2) |
| Hispanic | 1,752 | (4.2) | 1,287 | (4.4) | 982 | (3.6) |
| Other/missinga | 2,546 | (6.2) | 1,939 | (6.7) | 1,504 | (5.6) |
| White, non-Hispanic | 27,768 | (67.3) | 19,914 | (68.7) | 18,294 | (67.6) |
| Area of residence | ||||||
| Metropolitan | 32,644 | (79.2) | 23,067 | (79.5) | 21,330 | (78.8) |
| Nonmetropolitan | 8,586 | (20.8) | 5,934 | (20.5) | 5,724 | (21.2) |
| Medicaid eligibility | ||||||
| Disability | 13,920 | (33.8) | 9,391 | (32.4) | 11,222 | (41.5) |
| Foster care/adoption | 1,763 | (4.3) | 1,156 | (4.0) | 1,429 | (5.3) |
| Poverty | 25,547 | (62.0) | 18,454 | (63.6) | 14,403 | (53.2) |
| Clinical characteristics | ||||||
| Externalizing problems | 25,303 | (61.4) | 19,115 | (65.9) | 16,776 | (62.0) |
| Internalizing problems | 28,575 | (69.3) | 20,732 | (71.5) | 19,437 | (71.8) |
| Psychosis or other thought disorders | 6,017 | (14.6) | 4,706 | (17.2) | 4,655 | (17.2) |
| Substance use | 2,569 | (6.2) | 1,621 | (5.6) | 1,977 | (7.3) |
| Abuse/neglect | 2,934 | (7.1) | 1,906 | (6.6) | 2,186 | (8.1) |
| Intellectual disability | 27,054 | (65.6) | 14,825 | (51.1) | 27,054 | (100) |
| None | 14,176 | (34.4) | 14,176 | (48.9) | 0 | (0) |
| Mild | 2,143 | (5.2) | 1,243 | (4.3) | 2,143 | (7.9) |
| Moderate | 1,977 | (4.8) | 568 | (2.0) | 1,977 | (7.3) |
| Severe | 666 | (1.6) | 230 | (0.8) | 666 | (2.5) |
| Profound | 242 | (0.6) | 64 | (0.2) | 242 | (0.9) |
| Otherb | 22,026 | (53.4) | 12,720 | (43.9) | 22,026 | (81.4) |
| Autism | 29,001 | (70.3) | 29,001 | (100) | 14,825 | (54.8) |
| Medical conditions | ||||||
| No chronic condition | 5,690 | (13.8) | 4,701 | (16.2) | 1,478 | (5.5) |
| Chronic noncomplex | 13,059 | (31.7) | 10,093 | (34.8) | 7,615 | (28.1) |
| Chronic complex | 22,481 | (54.5) | 14,207 | (49.0) | 17,961 | (66.4) |
Note:
Includes American Indian/Alaska Native, Asian, multiple races, Pacific Islander/Native Hawaiian, unknown race.
Includes all other and unspecified intellectual disability diagnoses.
Co-occurring psychiatric conditions were prevalent in the overall sample, the autism cohort, and the ID cohort, with co-occurring internalizing problems being particularly common in each group (69.3%, 71.5%, and 71.8%, respectively). Less than one-tenth of sample youth had a history of abuse or neglect (7.1%), and this was consistent across the autism (6.6%) and ID (8.1%) cohorts. A chronic complex medical condition such as epilepsy was identified in more than half of the sample (54.5%), with the prevalence being higher in the cohort with ID (66.4%) than in the cohort with autism (49.0%).
Factors Associated With DSH
Autism and DSH
During the follow-up period, at least 1 DSH claim was recorded for 734 (2.5%) youths with autism. In the fully adjusted model for youth with autism presented in Table 2, where an HR greater than 1.0 indicates a positive association and an HR less than 1.0 indicates a negative association, increased risks for DSH were associated with female sex (vs male; HR 1.44 [95% CI 1.23-1.69]), older age (vs 5-9 years; 10-14 years: HR 3.71 [95% CI 2.74-5.03]; 15-19 years: HR 4.80 [95% CI 3.50-6.59]; 20-24 years: HR 3.26 [95% CI 2.27-4.71]), and Hispanic ethnicity (vs non-Hispanic White; HR 1.46 [95% CI 1.01-2.10]). Co-occurring psychiatric conditions were associated with increased DSH risk, including internalizing problems (HR 4.64 [95% CI 3.28-6.57]), externalizing problems (HR 1.77 [95% CI 1.36-2.29]), substance use disorders (HR 2.62 [95% CI 2.17-3.16]), and psychosis or other thought problems (HR 3.30 [95% CI 2.77-3.93]), as was a history of abuse or neglect (HR 2.43 [95% CI 2.01-2.94]) and the presence of a chronic complex medical condition (vs none; HR 1.42 [95% CI 1.04-1.93]). Youth with autism who were eligible for Medicaid due to disability had a decreased DSH risk (vs poverty; HR 0.67 [95% CI 0.56-0.80]), as did youth with co-occurring moderate ID (vs no ID; HR 0.31 [95% CI 0.14-0.69]).
Table 2.
Factors Associated With Deliberate Self-Harm Among Medicaid-Enrolled Youth Diagnosed With Autism, 2010-2020
| Hazard ratio | (95%CI) | p | |
|---|---|---|---|
| Sex | |||
| Female | 1.44 | (1.23-1.69) | <.001 |
| Male | 1.00 | ||
| Age range, y | |||
| 5-9 | 1.00 | ||
| 10-14 | 3.71 | (2.74-5.03) | <.001 |
| 15-19 | 4.80 | (3.50-6.59) | <.001 |
| 20-24 | 3.26 | (2.27-4.71) | <.001 |
| Race/ethnicity | |||
| Black, non-Hispanic | 1.10 | (0.90-1.34) | .365 |
| Hispanic | 1.46 | (1.01-2.10) | .043 |
| Other/missinga | 1.25 | (0.87-1.80) | .234 |
| White, non-Hispanic | 1.00 | ||
| Area of residence | |||
| Metropolitan | 1.00 | ||
| Nonmetropolitan | 1.02 | (0.85-1.22) | .841 |
| Medicaid eligibility | |||
| Disability | 0.67 | (0.56-0.80) | <.001 |
| Foster care/adoption | 0.76 | (0.58-0.99) | .041 |
| Poverty | 1.00 | ||
| Clinical characteristics | |||
| Externalizing problems | 1.77 | (1.36-2.29) | <.001 |
| Internalizing problems | 4.64 | (3.28-6.57) | <.001 |
| Psychosis or other thought problems | 3.30 | (2.77-3.93) | <.001 |
| Substance use | 2.62 | (2.17-3.16) | <.001 |
| Abuse/neglect | 2.43 | (2.01-2.94) | <.001 |
| Intellectual disability | |||
| None | 1.00 | ||
| Mild | 1.01 | (0.75-1.35) | .948 |
| Moderate | 0.31 | (0.14-0.69) | .005 |
| Severe | 0.33 | (0.08-1.32) | .117 |
| Profound | 0.95 | (0.13-6.83) | .963 |
| Otherb | 0.89 | (0.74-1.06) | .189 |
| Medical conditions | |||
| No chronic condition | 1.00 | ||
| Chronic noncomplex | 1.03 | (0.73-1.44) | .865 |
| Chronic complex | 1.42 | (1.04-1.93) | .028 |
Note:
Includes American Indian/Alaska Native, Asian, multiple races, Pacific Islander/Native Hawaiian, unknown race.
Includes all other and unspecified intellectual disability diagnoses.
ID and DSH
At least 1 DSH claim was recorded for 686 (2.7%) youths with ID during the study period. Table 3 presents HRs and their associated 95% CIs for the Cox proportional hazards regression model in the cohort of youth with ID. In the fully adjusted model examining the association between ID and DSH, factors associated with an increased DSH hazard included female sex (vs male; HR 1.61 [95% CI 1.38-1.88]) and older age (vs 5-9 years: 10-14 years: HR 3.17 [95% CI 2.28-4.41]; 15-19 years: HR 3.98 [95% CI 2.83-5.58]; 20-24 years: HR 2.94 [95% CI 2.02-4.27]). Co-occurring psychiatric disorders including internalizing problems (HR 4.04 [95% CI 2.88-5.66]), externalizing problems (HR 2.26 [95% CI 1.73-2.95]), psychosis or other thought problems (HR 3.88 [95% CI 3.24-4.64]), and substance use disorders (HR 2.75 [95% CI 2.29-3.29]) were associated with increased DSH risk, as was a history of abuse or neglect (HR 2.03 [95% CI 1.68-2.45]). Youth with moderate ID (HR 0.42 [95% CI 0.25-0.70]) had decreased DSH risk relative to youth with mild ID. Youth with ID who were eligible for Medicaid due to disability (vs poverty: HR 0.61 [95% CI 0.52-0.72]) or foster care/adoption (vs poverty; HR 0.70 [95% CI 0.55-0.90]) had a reduced DSH risk.
Table 3.
Factors Associated With Deliberate Self-Harm Among Medicaid-Enrolled Youth Diagnosed With Intellectual Disability, 2010-2020
| Hazard ratio | (95%CI) | p | |
|---|---|---|---|
| Sex | |||
| Female | 1.61 | (1.38-1.88) | <.001 |
| Male | 1.00 | ||
| Age range, y | |||
| 5-9 | 1.00 | ||
| 10-14 | 3.17 | (2.28-4.41) | <.001 |
| 15-19 | 3.98 | (2.83-5.58) | <.001 |
| 20-24 | 2.94 | (2.02-4.27) | <.001 |
| Race/ethnicity | |||
| Black, non-Hispanic | 1.18 | (0.98-1.44) | .072 |
| Hispanic | 1.22 | (0.80-1.81) | .353 |
| Other/missinga | 1.05 | (0.68-1.63) | .823 |
| White, non-Hispanic | 1.00 | ||
| Area of residence | |||
| Metropolitan | 1.00 | ||
| Nonmetropolitan | 1.02 | (0.85-1.22) | .849 |
| Medicaid eligibility | |||
| Disability | 0.61 | (0.52-0.72) | <.001 |
| Foster care/adoption | 0.70 | (0.55-0.90) | .006 |
| Poverty | 1.00 | ||
| Clinical characteristics | |||
| Externalizing problems | 2.26 | (1.73-2.95) | <.001 |
| Internalizing problems | 4.04 | (2.88-5.66) | <.001 |
| Psychosis or other thought problems | 3.88 | (3.24-4.64) | <.001 |
| Substance use | 2.75 | (2.29-3.29) | <.001 |
| Abuse/neglect | 2.03 | (1.68-2.45) | <.001 |
| Intellectual disability | |||
| Mild | 1.00 | ||
| Moderate | 0.42 | (0.25-0.70) | <.01 |
| Severe | 0.76 | (0.37-1.58) | .467 |
| Profound | 0.70 | (0.17-2.84) | .614 |
| Otherb | 0.95 | (0.76-1.19) | .645 |
| Autism | 1.16 | (0.99-1.37) | .070 |
| Medical conditions | |||
| No chronic condition | 1.00 | ||
| Chronic noncomplex | 0.83 | (0.51-1.35) | .461 |
| Chronic complex | 1.08 | (0.69-1.69) | .750 |
Note:
Includes American Indian/Alaska Native, Asian, multiple races, Pacific Islander/Native Hawaiian, unknown race.
Includes all other and unspecified intellectual disability diagnoses.
Discussion
This study examined the demographic and clinical correlates of DSH in a large sample of Medicaid-enrolled youth with autism and/or ID. Study findings highlight the clinical complexity associated with autism and ID in the form of co-occurring mental, neurodevelopmental, and physical health conditions. Autism and ID commonly co-occurred, with one-third of study youth being diagnosed with both autism and ID, and the prevalence of mental health conditions and complex medical conditions was quite high among youth with autism and/or ID.
The landmark Isle of Wight study identified an inverse relationship between IQ and the likelihood of experiencing a mental health condition and called attention to the nonrandom associations of ID with mental and physical health conditions that primarily affect the brain such as epilepsy and cerebral palsy.18 Subsequent work has confirmed an elevated risk of mental health conditions, physical health conditions, exposure to adverse life events, and overall mortality in association with ID26,27 and autism28 relative to the neurotypical population. Consistent with this literature, approximately three-fourths of study youth with autism and/or ID were identified as having internalizing problems, more than half had a complex chronic medical condition, and approximately 7% of study youth had documentation of abuse or neglect.
As in the general pediatric population, increasing age, psychiatric conditions, trauma, complex physical health conditions, and female sex were associated with a heightened risk of DSH for youth with autism and/or ID. Previous research has identified a statistically significant association between autism and an elevated risk of suicidal thinking and behavior even after controlling for the presence of psychiatric conditions, medical conditions such as epilepsy, adverse life events, and demographic risk factors4,5,7,8,29 and has also suggested that females with autism may be at proportionally greater risk for DSH and suicide than neurotypical female youth.6,30 Co-occurring autism was not found to be an independent risk factor for DSH among youth with ID in adjusted analyses.
Previous research suggests that youth with autism may experience an increased risk of suicidal thinking and behavior, and study results provide evidence that the correlates of DSH in youth with autism and ID are similar to those found in neurotypical youth. Future research should expand on these findings and better clarify the association between autism and/or ID and suicide risk by moving beyond the proxy variable of DSH and exploring correlates of suicide or narrowly defined suicidal behavior. Additional research should consider why youth with autism might be at increased risk of suicidal thinking and behavior and focus on strategies to mitigate this risk. Barriers to social communication and interaction have been implicated as a source of elevated suicide risk in individuals with autism,31,32 who are more likely to experience loneliness, lack of social support, and social isolation than neurotypical peers.33 Efforts to address social connectedness and feelings of isolation may have potential to reduce suicide risk in people with autism.
Individuals with autism value and benefit from individually tailored treatment and support, but commonly report difficulties in accessing treatment and support in the health care setting as well as a lack of understanding and knowledge relevant to the care of people with autism among health care professionals.34 The transition from pediatric services to the less familiar and often fragmented adult system of care may be particularly stressful, and careful attention and support from health and mental health professionals is warranted to promote continuity of care.35 Emotional dysregulation36 and sleep disturbance37 may also contribute to a heightened risk of DSH in youth with autism, suggesting that interventions developed to address emotional dysregulation and sleep problems in youth with autism might also warrant study as a means of reducing suicide risk. A shared familial or genetic predisposition for suicidal behavior among people with autism has also been suggested, and warrants additional study.5,29,38 Consistent with prior research suggesting that people with lower support needs (ie, lower levels of ID severity) are at greater suicide risk than individuals needing higher levels of support,14 moderate ID appeared to be associated with a somewhat reduced risk of DSH relative to absent or mild ID. Although study results are unable to contribute to our understanding of why this might be the case, the ability to plan and execute acts of DSH may decline as ID severity increases. Research on the association between autism and/or ID and suicide risk has been inconclusive, with some work finding that the risk of DSH is greater in people with autism without ID than in individuals with autism and ID,8,29 whereas other studies suggest that co-occurring ID is associated with a greater likelihood of DSH in people with autism.39
Study findings highlight the importance of access to care and of educating health and mental health care providers, as well as patients and families, about the risk of suicidal thinking and behavior in youth people with autism and/or ID and also call attention to the high prevalence of psychiatric conditions, complex health conditions such as epilepsy, life adversity, and co-occurrence of autism and ID. There is a need for studies to determine if practices such as suicide risk screening,40,41 evidence-based safety planning, and suicide-specific psychotherapies might require modifications in youth with autism and/or ID as well as how such interventions may need to be adapted for use in individuals with more severe ID.42 Relatedly, interventions to cultivate self-regulation strategies, improve sleep, and enhance social connections43 warrant greater attention and investigation.
The use of a large dataset in which individuals could be tracked over time across a broad age range is a strength of this study. However, there are several limitations. First, the data were derived from the Medicaid claims program of a single state, so findings may not be generalizable to other state Medicaid programs or non-Medicaid programs. Second, Medicaid claims data do not include standardized diagnoses, allowing for variation in how conditions are captured. Third, study reliance on claims data to classify events requiring medical attention as DSH did not allow for distinctions between nonsuicidal self-injury and suicide attempts. Consequently, DSH associated with suicidal intent could not be distinguished from nonsuicidal self-injury. Fourth, the study did not provide an opportunity to compare young people with autism and/or ID with neurotypical peers. Fifth, the use of claims data precluded the inclusion of additional factors associated with DSH and relevant to individuals with autism and/or ID such as bullying and other stressors. Finally, although the study included 11 years of data, individuals were not tracked across their life span and entered the study at various time points, which limits conclusions that can be drawn about the greatest risk period for DSH events among youth with autism and/or ID.
Risk factors for DSH in youth with autism and/or ID appear to be consistent with those found in neurotypical youth and include increasing age, history of abuse or neglect, co-occurring mental health conditions, substance use, and female sex. Clinician and consumer education regarding suicide risk and its correlates in youth with autism and ID is warranted, and future research should explore how and why youth with autism and/or ID might be at elevated suicide risk and focus on the development and testing of targeted interventions.
CRediT authorship contribution statement
Carmen Lopez-Arvizu: Writing – review & editing, Writing – original draft, Conceptualization. Danielle L. Steelesmith: Writing – review & editing, Formal analysis. Brittany N. Hand: Writing – review & editing, Methodology. Rui Huang: Formal analysis. Amanda J. Thompson: Writing – review & editing, Methodology. Elyse N. Llamocca: Writing – review & editing. Bridget A. Quinn: Writing – review & editing. Cynthia A. Fontanella: Methodology, Data curation, Conceptualization. John V. Campo: Writing – review & editing, Conceptualization.
Footnotes
This project was funded by a grant from the National Institute of Mental Health (NIMH) (1R01MH117594-01 to Dr. Fontanella). Dr. Llamocca was also supported by a grant from the NIMH (T32-MH125792).
This article is part of a special series devoted to the subject of suicide in children and adolescents, with a focus on the need for improvement to current approaches to prediction, prevention, and treatment. This special series is edited by Guest Editor Lynsay Ayer, PhD, Deputy Editor Daniel P. Dickstein, MD, and Editor Manpreet K. Singh, MD, MS.
This study was presented as a poster at the American Academy of Child and Adolescent Psychiatry’s 70th Annual Meeting; October 14-19, 2023; New York, NY.
Data Sharing: Data collected for the study will not be made available to others.
Danielle L. Steelesmith and Rui Huang served as the statistical experts for this research.
Disclosure: Carmen Lopez-Arvizu, Danielle L. Steelesmith, Brittany N. Hand, Rui Huang, Amanda J. Thompson, Elyse N. Llamocca, Bridget A. Quinn, Cynthia A. Fontanella, and John V. Campo have reported no biomedical financial interests or potential conflicts of interest.
Supplemental Material
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