We provide an update on reproductive health education (RHE) and substance use prevention education (SUPE) participation for autistic youth compared with other youth with and without individualized education plans (IEPs) and 504 plans. The 800 000 autistic youth served by the US special education system need education to make informed decisions about reproductive health and substance use.
Data were from the National Longitudinal Transition Study-2012, a survey designed to yield nationally representative estimates of the experiences of US youth. Autistic youth (n = 390) who received RHE and SUPE were compared with youth with all other IEP classifications (n = 4420), with a 504 plan (n = 350), and with no IEP or 504 plan (n = 980). All youth were ≥14 years old and able to self-report on a survey. Bivariate and multivariate regression analyses were performed for each group to identify characteristics associated with RHE and SUPE receipt.
Autistic youth reported a significantly lower rate of RHE (47.4%) and SUPE (49.6%) inclusion versus students with no IEP or 504 plan (59.2% and 57.4%, respectively). Autistic girls were more than twice as likely to report RHE receipt than autistic boys (55.1% vs 45.9%). For autistic youth, no markers for receipt of SUPE were identified.
Autistic youth are underserved when it comes to school-based RHE and SUPE, potentially undermining self-determination and leading to poorer lifespan health trajectories. Research and policy advocacy are needed to ensure that these youth have access to RHE and SUPE.
Autistic adolescents need reproductive health and substance use prevention education but may not get it. Only 5 states mandate accessible health education for youth with disabilities. However, districts increasingly provide teachers professional development to support disability-inclusive health education.
This study used a national dataset to determine rates of autistic youth who reported reproductive health and substance use prevention education. Less than half of these youth received either, significantly lower than students not receiving special education services.
Approximately 800 000 youth classified as autistic are served by the US special education system, with 92% enrolled in public schools and most spending at least half of their time in general education classrooms.1 An individualized education plan (IEP) is developed by a multidisciplinary team for every youth receiving special education services under Part B of the Individuals With Disabilities Education Act. Students with disabilities who do not need or qualify for special education may instead receive 504 plan accommodations (eg, extra time on tests), developed in accordance with Section 504 of the Rehabilitation Act of 1973, to help them to access the general education curriculum. It is critical to understand if health education strategies are being implemented for youth with disabilities as intended.
Autistic adolescents need reproductive health education (RHE) and substance use prevention education (SUPE) just like their neurotypical peers. School-based RHE is designed to prepare youth for healthy relationships, teach socially appropriate and consensual dating behavior, increase accuracy and comfort when reporting sexual health issues, and encourage positive self-image and communication skills.2 RHE topics typically include anatomy, reproduction, age of consent, abstinence, and personal values. School-based SUPE is designed to counteract substance use patterns that could become established in adolescence and contribute to morbidity and mortality over the lifespan. SUPE can include evidence-based approaches such as social resistance skills training (eg, increasing social influence awareness), normative education (eg, correct inaccurate perceptions of high substance use prevalence), and competence enhancement (ie, life skills such as problem-solving, resisting influence, increasing self-control, and coping and social skills).3
The Centers for Disease Control and Prevention4 and American Academy of Pediatrics (AAP)5 emphasize the role of schools in promoting health for adolescents and adults with disabilities. The AAP recommends that developmentally appropriate RHE be provided to every student with intellectual and developmental disabilities, including autistic youth.6 Additionally, the Substance Abuse and Mental Health Services Administration7 has highlighted the importance of SUPE in schools. In response, schools have adopted policies that support appropriate health education for youth with disabilities. Most high schools (86%) include SUPE in their health education policies.8 Currently, 5 states mandate accessible health education. Districts have increasingly provided professional development on effective health instruction and mandate strategies to support disability-inclusive health education.8 These policy metrics are promising, but the extent to which autistic youth are included in health education and factors that affect inclusion remain understudied.
In the next decade, 707 000 to 1 116 000 US autistic youth will reach 18 years of age9,10 ; therefore, it is critical to understand the health education strategies being implemented for these youth. The only previous nationally representative data on inclusion of youth with disabilities in RHE and SUPE was the 2000 National Longitudinal Transition Study-2 (NLTS-2). The authors of the NLTS-2 reports found that across IEP disability classification groups, autistic youth were the least likely to receive RHE (28%) or SUPE (25%).11 In the current study, we provide an update and investigate the inclusion of autistic youth in RHE and SUPE using the National Longitudinal Transition Study-2012 (NLTS-2012).12 Specifically, we (1) estimate the rate of RHE and SUPE receipt among autistic youth compared with other youth with and without IEPs and 504 plans and (2) identify factors associated with the receipt of RHE and SUPE.
Methods
The NLTS-201212 was designed to yield nationally representative estimates of the characteristics and experiences of US youth, focusing on those who received special education services. The NLTS-2012 investigators sampled youth who (1) received special education services in 1 of 12 federally designated categories as part of an IEP, (2) received accommodations under a 504 plan, or (3) did not receive IEP services or 504 accommodations. Surveys were administered to parents and then to youth if the parent believed that the youth could participate. NLTS-2012 design details are available elsewhere.12
Participants
This study examined 4 groups: (1) youth in the autism IEP category (n = 390), (2) youth in any other IEP category (n = 4030), (3) youth with 504 plan accommodations (n = 350), and (4) youth with no IEP or 504 plan (n = 980). Because some autistic youth may not have IEPs or 504 plans, references to youth in specific IEP categories (eg, autistic youth) should be interpreted as autistic youth with an IEP. Analyses were limited to students age ≥14 years in grades 9 to 13 or an ungraded class in a public school setting (not in a residential or private school setting or homeschooled) and who answered the youth questionnaire on their own behalf. Proxy respondents were not asked whether youth received RHE or SUPE.
Dependent Variables
The dependent variable for RHE analysis was the response to the item “In school year (2011–2012 or 2012–2013), did school staff provide you with reproductive health or pregnancy prevention education or services?” The dependent variable for SUPE analysis was the response to the item, “In school year (2011–2012 or 2012–2013), did school staff provide you with substance abuse counseling or education? This includes both drugs and alcohol.” Responses to these items included yes and no. Regression analyses were conducted separately for RHE and SUPE.
Independent Variables
For all 4 study groups, independent variables included demographic information (ie, age, sex, race, household income as a percentage of the federal poverty level). In addition, for youth with an IEP, the following variables were included: parent and youth attendance at an IEP meeting in the past 2 years and how well youth could carry on a conversation, understand what is said to them, get to places outside the home, count change, and use a telephone and look up telephone numbers. Responses to these items included no trouble, a little trouble, a lot of trouble, or cannot.
Analysis
Receipt of RHE and SUPE
Bivariate RHE and SUPE receipt estimates are presented for the following groups: youth in each IEP category, youth with 504 plan accommodations, and youth with no IEP or 504 plan. Univariate logistic regressions with RHE and SUPE receipt as the outcomes and a dummy indicator for no IEP or 504 plan versus each IEP category or with 504 plan accommodations were used to test for differences between the no IEP or 504 plan group and each other group.
Factors Associated With RHE and SUPE Receipt
The percentage of youth who received RHE and SUPE are presented for each level of each independent variable by group, and significant differences in receipt of RHE and SUPE were assessed using logistic regression. Multivariate logistic regression was used to examine associations of all independent variables with receipt of RHE and SUPE. Separate regression analyses were performed for each group. Analysis was performed using Stata version 15 and accounted for the need to incorporate both the sampling weights and sampling design variables.12
Results
Receipt of RHE
Figure 1 shows the percentage of youth in each IEP category who reported receiving RHE. Less than half of autistic youth reported receiving RHE (47.4%), significantly fewer than youth with no IEP or 504 plan (59.2%). Compared with autistic youth, only youth in the intellectual disability IEP category reported lower receipt of RHE (44.6%).
Estimates of the percentage of students receiving RHE by disability classification. Statistical comparisons made to the no IEP or 504 plan group.
Estimates of the percentage of students receiving RHE by disability classification. Statistical comparisons made to the no IEP or 504 plan group.
Receipt of SUPE
Figure 2 shows the percentage of youth in each IEP category who reported receiving SUPE. Half of autistic youth (49.6%) reported receiving SUPE, significantly fewer than youth with no IEP or 504 plan (57.0%). Youth in the intellectual disability, emotional disturbance, multiple disabilities, and orthopedic impairment IEP categories also reported lower receipt of SUPE than those with no IEP or 504 plan.
Estimates of the percentage of students receiving SUPE. Statistical comparisons made to the no IEP or 504 plan group.
Estimates of the percentage of students receiving SUPE. Statistical comparisons made to the no IEP or 504 plan group.
Factors Associated With RHE Receipt
The only factor associated with RHE receipt in bivariate analyses for autistic youth was how well the youth could use the telephone and look up telephone numbers. Youth who could do this very well were more likely to receive RHE than those who could not (50% vs 31%; Table 1). For youth in any other IEP category, all disability characteristics and attendance at an IEP meeting were associated with receipt of RHE, with poorer functional ability associated with a lower probability of receiving RHE in all cases. For youth with no IEP or 504 plan, fewer from low-income households received RHE compared with not from low-income households.
Percentage Estimates and CIs for Receipt of RHE by Demographic and Disability Characteristics
| Autism IEP(n = 390) | Other IEP(n = 4420) | 504 Plan(n = 350) | No IEP or 504 Plan(n = 980) | |||||
|---|---|---|---|---|---|---|---|---|
| Characteristic | % | 95% CI | % | 95% CI | % | 95% CI | % | 95% CI |
| All patients | 47.4** | 41.7–53.1 | — | — | 60.7 | 54.8–66.2 | 59.2 | 55.5–62.7 |
| Age, y | ||||||||
| 14–16 | 48.2 | 40.4–56.1 | 52.5 | 48.9–56.1 | 61.2 | 53.3–68.5 | 59.8 | 55.4–64.0 |
| 17–21 | 46.3 | 38.1–54.5 | 54.7 | 51.1–58.2 | 59.6 | 49.5–69.0 | 57.8 | 51.2–64.1 |
| Sex | ||||||||
| Female | 55.1 | 40.9–68.6 | 54.7 | 50.4–59.0 | 61.2 | 52.3–69.5 | 57.2 | 52.2–62.0 |
| Male | 45.9 | 40.0–51.9 | 52.7 | 49.5–56.0 | 60.2 | 51.2–68.5 | 61.4 | 56.4–66.2 |
| Race | ||||||||
| White | 46.0 | 39.6–52.6 | 53.7 | 50.3–57.1 | 60.5 | 53.5–67.1 | 59.9 | 55.5–64.2 |
| Black | 54.9 | 38.4–70.3 | 53.4 | 47.7–59.1 | 58.9 | 45.8–70.9 | 59.5 | 50.3–68.1 |
| Other/multiracial | 53.0 | 34.4–70.8 | 54.2 | 47.0–61.3 | 62.4 | 42.4–78.9 | 54.1 | 43.1–64.6 |
| Household income <185% FPL | 39.7 | 30.6–49.5 | 51.4 | 48.1–54.7 | 60.1 | 49.9–69.5 | 54.3* | 48.9–59.6 |
| Household >185% FPL | 51.0 | 43.9–58.0 | 56.2 | 52.0–60.5 | 60.9 | 53.9–67.6 | 62.6* | 58.0–66.9 |
| Parent did not attend an IEP meeting | 29.3 | 13.4–52.6 | 55.4 | 48.2–62.3 | — | — | — | — |
| Parent attended an IEP meeting | 48.5 | 42.6–54.5 | 52.8 | 49.8–55.8 | — | — | — | — |
| Youth did not attend an IEP meeting | 40.1 | 28.7–52.6 | 47.3** | 42.2–52.4 | — | — | — | — |
| Youth attended an IEP meeting | 48.8 | 42.6–55.2 | 55.6** | 52.4–58.7 | — | — | — | — |
| How well does youth carry on a conversation? | ||||||||
| Not at all well or with a lot of trouble | 51.4 | 39.4–63.3 | 39.5** | 30.6–49.2 | — | — | — | — |
| With no trouble or a little trouble | 46.6 | 40.0–53.4 | 54.2** | 51.3–57.0 | — | — | — | — |
| How well does youth understand what is said to him or her? | ||||||||
| Not at all well, with a lot of trouble, or with a little trouble | 43.7 | 37.1–50.5 | 50.3* | 46.4–54.1 | — | — | — | — |
| With no trouble | 54.5 | 45.1–63.6 | 55.2* | 51.6–58.7 | — | — | — | — |
| How well does youth get to places outside the home? | ||||||||
| Very well or pretty well | 50.3 | 43.6–57.0 | 54.8*** | 51.9–57.7 | — | — | — | — |
| Not very well or not at all well, not allowed | 38.6 | 28.8–49.3 | 39.3*** | 32.7–46.4 | — | — | — | — |
| How well does youth count change? | ||||||||
| Very well or pretty well | 48.3 | 40.5–56.3 | — | — | — | — | — | — |
| Not very well or not at all well | 41.8 | 32.3–52.0 | — | — | — | — | — | — |
| How well does youth use the telephone and look up telephone numbers? | ||||||||
| Very well or pretty well | 49.9** | 43.2–56.6 | — | — | — | — | — | — |
| Not very well or not at all well | 31.0** | 20.6–43.8 | — | — | — | — | — | — |
| Autism IEP(n = 390) | Other IEP(n = 4420) | 504 Plan(n = 350) | No IEP or 504 Plan(n = 980) | |||||
|---|---|---|---|---|---|---|---|---|
| Characteristic | % | 95% CI | % | 95% CI | % | 95% CI | % | 95% CI |
| All patients | 47.4** | 41.7–53.1 | — | — | 60.7 | 54.8–66.2 | 59.2 | 55.5–62.7 |
| Age, y | ||||||||
| 14–16 | 48.2 | 40.4–56.1 | 52.5 | 48.9–56.1 | 61.2 | 53.3–68.5 | 59.8 | 55.4–64.0 |
| 17–21 | 46.3 | 38.1–54.5 | 54.7 | 51.1–58.2 | 59.6 | 49.5–69.0 | 57.8 | 51.2–64.1 |
| Sex | ||||||||
| Female | 55.1 | 40.9–68.6 | 54.7 | 50.4–59.0 | 61.2 | 52.3–69.5 | 57.2 | 52.2–62.0 |
| Male | 45.9 | 40.0–51.9 | 52.7 | 49.5–56.0 | 60.2 | 51.2–68.5 | 61.4 | 56.4–66.2 |
| Race | ||||||||
| White | 46.0 | 39.6–52.6 | 53.7 | 50.3–57.1 | 60.5 | 53.5–67.1 | 59.9 | 55.5–64.2 |
| Black | 54.9 | 38.4–70.3 | 53.4 | 47.7–59.1 | 58.9 | 45.8–70.9 | 59.5 | 50.3–68.1 |
| Other/multiracial | 53.0 | 34.4–70.8 | 54.2 | 47.0–61.3 | 62.4 | 42.4–78.9 | 54.1 | 43.1–64.6 |
| Household income <185% FPL | 39.7 | 30.6–49.5 | 51.4 | 48.1–54.7 | 60.1 | 49.9–69.5 | 54.3* | 48.9–59.6 |
| Household >185% FPL | 51.0 | 43.9–58.0 | 56.2 | 52.0–60.5 | 60.9 | 53.9–67.6 | 62.6* | 58.0–66.9 |
| Parent did not attend an IEP meeting | 29.3 | 13.4–52.6 | 55.4 | 48.2–62.3 | — | — | — | — |
| Parent attended an IEP meeting | 48.5 | 42.6–54.5 | 52.8 | 49.8–55.8 | — | — | — | — |
| Youth did not attend an IEP meeting | 40.1 | 28.7–52.6 | 47.3** | 42.2–52.4 | — | — | — | — |
| Youth attended an IEP meeting | 48.8 | 42.6–55.2 | 55.6** | 52.4–58.7 | — | — | — | — |
| How well does youth carry on a conversation? | ||||||||
| Not at all well or with a lot of trouble | 51.4 | 39.4–63.3 | 39.5** | 30.6–49.2 | — | — | — | — |
| With no trouble or a little trouble | 46.6 | 40.0–53.4 | 54.2** | 51.3–57.0 | — | — | — | — |
| How well does youth understand what is said to him or her? | ||||||||
| Not at all well, with a lot of trouble, or with a little trouble | 43.7 | 37.1–50.5 | 50.3* | 46.4–54.1 | — | — | — | — |
| With no trouble | 54.5 | 45.1–63.6 | 55.2* | 51.6–58.7 | — | — | — | — |
| How well does youth get to places outside the home? | ||||||||
| Very well or pretty well | 50.3 | 43.6–57.0 | 54.8*** | 51.9–57.7 | — | — | — | — |
| Not very well or not at all well, not allowed | 38.6 | 28.8–49.3 | 39.3*** | 32.7–46.4 | — | — | — | — |
| How well does youth count change? | ||||||||
| Very well or pretty well | 48.3 | 40.5–56.3 | — | — | — | — | — | — |
| Not very well or not at all well | 41.8 | 32.3–52.0 | — | — | — | — | — | — |
| How well does youth use the telephone and look up telephone numbers? | ||||||||
| Very well or pretty well | 49.9** | 43.2–56.6 | — | — | — | — | — | — |
| Not very well or not at all well | 31.0** | 20.6–43.8 | — | — | — | — | — | — |
—, not applicable; FPL, federal poverty level.
P < .05;
P < .01;
P < .001.
In multivariate analyses, autistic girls had 2.26 times the odds of RHE receipt compared with boys (odds ratio [OR], 2.26; 95% confidence interval [CI], 1.17–4.39); all other variables were not significant. Youth in any other IEP category were more likely to receive RHE if they attended an IEP meeting (OR, 1.40; 95% CI, 1.07–1.82) and were able to get to places outside the home with no trouble (OR, 1.54; 95% CI, 1.11–2.14).
Factors Associated With SUPE Receipt
There were no statistically significant bivariate associations with receipt of SUPE for autistic youth (Table 1). In contrast, for youth in all other IEP categories, those who had attended an IEP meeting and those who had less difficulty with carrying on a conversation or getting to places outside the home were more likely to report that they received SUPE than youth with more difficulties or who had not attended an IEP meeting. For youth with no IEP or 504 plan, 60% of younger youth (ages 14–16 years) reported receipt of SUPE compared with 51% of older youth (ages 17–21 years).
No statistically significant associations were found with receipt of SUPE and any independent variable in multivariate logistic regression for autistic youth, youth with 504 plan accommodations, or youth with no IEP or 504 plan (Table 2). For youth in all other IEP categories, attendance at an IEP meeting (OR, 1.49; 95% CI, 1.18–1.87), having no trouble with carrying on a conversation (OR, 1.99; 95% CI, 1.32–3.01), and having no trouble getting to places outside the home (OR, 1.59; 95% CI, 1.21–2.09) were associated with a higher odds of SUPE receipt.
Percentage Estimates and CIs for Receipt of SUPE by Demographic and Disability Characteristics
| Autism IEP(n = 390) | Other IEP(n = 4420) | 504 Plan(n = 350) | No IEP or 504 Plan(n = 980) | |||||
|---|---|---|---|---|---|---|---|---|
| Characteristic | % | 95% CI | % | 95% CI | % | 95% CI | % | 95% CI |
| All patients | 49.6* | 43.7–55.5 | — | — | 55.1 | 48.3–61.7 | 57.0 | 53.4–60.6 |
| Age, y | ||||||||
| 14–16 | 51.6 | 44.2–58.9 | 49.4 | 46.1–52.8 | 55.8 | 47.5–63.8 | 60.0* | 55.4–64.4 |
| 17–21 | 47.0 | 38.3–56.0 | 52.8 | 49.6–56.1 | 53.7 | 44.3–62.9 | 50.5* | 44.7–56.2 |
| Sex | ||||||||
| Female | 40.5 | 28.1–54.2 | 51.9 | 47.9–56.0 | 52.5 | 43.3–61.5 | 54.6 | 49.7–59.5 |
| Male | 51.3 | 44.8–57.7 | 50.3 | 47.3–53.3 | 57.4 | 48.2–66.1 | 59.7 | 54.3–64.9 |
| Race | ||||||||
| White | 48.5 | 41.7–55.4 | 51.7 | 48.5–54.9 | 53.6 | 45.4–61.6 | 57.5 | 52.9–61.9 |
| Black | 50.8 | 34.6–66.8 | 49.5 | 44.4–54.7 | 55.7 | 42.6–68.0 | 60.3 | 51.0–68.8 |
| Other/multiracial | 54.8 | 37.1–71.5 | 49.0 | 42.2–55.9 | 68.7 | 49.7–83.0 | 50.8 | 41.1–60.4 |
| Household income <185% FPL | 51.3 | 42.2–60.4 | 49.1 | 46.1–52.1 | 52.3 | 41.7–62.7 | 56.7 | 51.1–62.1 |
| Household >185% FPL | 48.6 | 41.0–56.2 | 53.6 | 49.7–57.4 | 56.9 | 48.0–65.3 | 57.3 | 52.5–62.0 |
| Parent did not attend an IEP meeting | 46.3 | 24.2–69.9 | 47.8 | 41.3–54.4 | — | — | — | — |
| Parent attended an IEP meeting | 50.4 | 44.2–56.7 | 51.2 | 48.3–54.1 | — | — | — | — |
| Youth did not attend an IEP meeting | 44.7 | 33.5–56.5 | 43.9*** | 39.9–47.9 | — | — | — | — |
| Youth attended an IEP meeting | 50.4 | 43.6–57.3 | 53.6*** | 50.8–56.5 | — | — | — | — |
| How well does youth carry on a conversation? | ||||||||
| Not at all well or with a lot of trouble | 45.3 | 33.1–58.1 | 33.2*** | 25.7–41.6 | — | — | — | — |
| With no trouble or a little trouble | 50.3 | 44.0–56.6 | 51.8*** | 49.4–54.3 | — | — | — | — |
| How well does youth understand what is said to him or her? | ||||||||
| Not at all well, with a lot of trouble, or with a little trouble | 46.7 | 39.5–54.0 | 50.5 | 46.8–54.1 | — | — | — | — |
| With no trouble | 54.1 | 44.4–63.6 | 51.0 | 47.9–54.1 | — | — | — | — |
| How well does youth get to places outside the home? | ||||||||
| Very well or pretty well | 52.6 | 46.0–59.1 | 52.0*** | 49.5–54.6 | — | — | — | — |
| Not very well or not at all well, not allowed | 41.2 | 30.6–52.7 | 39.2*** | 33.0–45.8 | — | — | — | — |
| How well does youth count change? | ||||||||
| Very well or pretty well | 48.6 | 41.2–56.1 | — | — | — | — | — | — |
| Not very well or not at all well | 48.0 | 38.2–58.0 | — | — | — | — | — | — |
| How well does youth use the telephone and look up telephone numbers? | ||||||||
| Very well or pretty well | 51.0 | 44.0–57.8 | — | — | — | — | — | — |
| Not very well or not at all well | 36.9 | 24.7–51.0 | — | — | — | — | — | — |
| Autism IEP(n = 390) | Other IEP(n = 4420) | 504 Plan(n = 350) | No IEP or 504 Plan(n = 980) | |||||
|---|---|---|---|---|---|---|---|---|
| Characteristic | % | 95% CI | % | 95% CI | % | 95% CI | % | 95% CI |
| All patients | 49.6* | 43.7–55.5 | — | — | 55.1 | 48.3–61.7 | 57.0 | 53.4–60.6 |
| Age, y | ||||||||
| 14–16 | 51.6 | 44.2–58.9 | 49.4 | 46.1–52.8 | 55.8 | 47.5–63.8 | 60.0* | 55.4–64.4 |
| 17–21 | 47.0 | 38.3–56.0 | 52.8 | 49.6–56.1 | 53.7 | 44.3–62.9 | 50.5* | 44.7–56.2 |
| Sex | ||||||||
| Female | 40.5 | 28.1–54.2 | 51.9 | 47.9–56.0 | 52.5 | 43.3–61.5 | 54.6 | 49.7–59.5 |
| Male | 51.3 | 44.8–57.7 | 50.3 | 47.3–53.3 | 57.4 | 48.2–66.1 | 59.7 | 54.3–64.9 |
| Race | ||||||||
| White | 48.5 | 41.7–55.4 | 51.7 | 48.5–54.9 | 53.6 | 45.4–61.6 | 57.5 | 52.9–61.9 |
| Black | 50.8 | 34.6–66.8 | 49.5 | 44.4–54.7 | 55.7 | 42.6–68.0 | 60.3 | 51.0–68.8 |
| Other/multiracial | 54.8 | 37.1–71.5 | 49.0 | 42.2–55.9 | 68.7 | 49.7–83.0 | 50.8 | 41.1–60.4 |
| Household income <185% FPL | 51.3 | 42.2–60.4 | 49.1 | 46.1–52.1 | 52.3 | 41.7–62.7 | 56.7 | 51.1–62.1 |
| Household >185% FPL | 48.6 | 41.0–56.2 | 53.6 | 49.7–57.4 | 56.9 | 48.0–65.3 | 57.3 | 52.5–62.0 |
| Parent did not attend an IEP meeting | 46.3 | 24.2–69.9 | 47.8 | 41.3–54.4 | — | — | — | — |
| Parent attended an IEP meeting | 50.4 | 44.2–56.7 | 51.2 | 48.3–54.1 | — | — | — | — |
| Youth did not attend an IEP meeting | 44.7 | 33.5–56.5 | 43.9*** | 39.9–47.9 | — | — | — | — |
| Youth attended an IEP meeting | 50.4 | 43.6–57.3 | 53.6*** | 50.8–56.5 | — | — | — | — |
| How well does youth carry on a conversation? | ||||||||
| Not at all well or with a lot of trouble | 45.3 | 33.1–58.1 | 33.2*** | 25.7–41.6 | — | — | — | — |
| With no trouble or a little trouble | 50.3 | 44.0–56.6 | 51.8*** | 49.4–54.3 | — | — | — | — |
| How well does youth understand what is said to him or her? | ||||||||
| Not at all well, with a lot of trouble, or with a little trouble | 46.7 | 39.5–54.0 | 50.5 | 46.8–54.1 | — | — | — | — |
| With no trouble | 54.1 | 44.4–63.6 | 51.0 | 47.9–54.1 | — | — | — | — |
| How well does youth get to places outside the home? | ||||||||
| Very well or pretty well | 52.6 | 46.0–59.1 | 52.0*** | 49.5–54.6 | — | — | — | — |
| Not very well or not at all well, not allowed | 41.2 | 30.6–52.7 | 39.2*** | 33.0–45.8 | — | — | — | — |
| How well does youth count change? | ||||||||
| Very well or pretty well | 48.6 | 41.2–56.1 | — | — | — | — | — | — |
| Not very well or not at all well | 48.0 | 38.2–58.0 | — | — | — | — | — | — |
| How well does youth use the telephone and look up telephone numbers? | ||||||||
| Very well or pretty well | 51.0 | 44.0–57.8 | — | — | — | — | — | — |
| Not very well or not at all well | 36.9 | 24.7–51.0 | — | — | — | — | — | — |
—, not applicable; FPL, federal poverty level.
P < .05;
P < .001.
Discussion
Inclusion of autistic youth in school health programs, including RHE and SUPE, has the potential to alter health trajectories across the life course by supporting sexual and reproductive health and healthy relationships and by preventing substance use initiation. However, we found that autistic youth were significantly less likely than youth with no IEP or 504 plan to receive RHE or SUPE. Indeed, autistic youth with IEPs are one of the most underserved subgroups among students with disabilities. Comparing our NLTS-2012 results to those of a previous analysis of NLTS-2 data, rates of RHE and SUPE for the autism group seem to have improved from 28% to 47% for RHE and 25% to 49% for SUPE. However, these two datasets are not directly comparable because the NLTS-2 investigators used teacher report for receipt of RHE and SUPE, meaning that youth with greater support needs were included, while the NLTS-2012 only included youth who could self-report, meaning that students whose parents did not perceive them as able to complete a self-report survey or interview were not included.
We do not know why more than half of autistic youth are excluded from RHE and SUPE, but we suspect that noninclusion may be related to perceived need. Teachers who responded to the NLTS-2 were least likely to rate autistic students who did not receive RHE or SUPE as being likely to benefit compared with other students with disabilities.11 Additionally, autistic girls included in the NLTS-2012 were more likely to receive RHE than boys, possibly because girls are considered to be more affected by RHE. This is at odds with recent research wherein investigators indicated that autistic people desire relationships and engage in sexual behavior, including during adolescence.13 Furthermore, studies have revealed that autistic adults are just as likely to have drug abuse or dependence diagnoses compared with control adults,14 and 23% to 44% of autistic college students report using alcohol.15 Of note, youth with 504 plan accommodations were about as likely as youth with no IEP or 504 plan to receive RHE.
Although we found significant differences between groups on receipt of RHE and SUPE, the absolute differences between groups were not large (eg, for RHE, reported receipt by group ranged from 44.6% to 60.7%). This could indicate problems with how the survey items were worded or interpreted by participants. Of note, these items were created by a national panel of experts and have been used previously.11 Because of the design of the NLTS-2012, only youth with an IEP who could self-report were included in the autism category in this study, and results may not be generalizable to autistic youth who require either more or fewer supports (eg, those with 504 plan accommodations). A strength of self-report is that youth may know better than parents or teachers what education they received, although it is also possible that they do not recall. Additionally, from these data, we cannot demonstrate whether the learning needs of autistic students who received RHE or SUPE were appropriately supported.
The results of this study reveal that autistic students in the US are underserved when it comes to RHE and SUPE, despite Centers for Disease Control and Prevention, AAP, and Substance Abuse and Mental Health Services Administration recommendations underscoring the importance of school-based health programming for youth. Research that supports accessible and inclusive RHE and SUPE for students with intellectual and developmental disabilities is urgently needed to inform policy changes and address this education gap.
Acknowledgments
The authors thank Paul Shattuck for his support and contribution to the initial design of this project.
Dr Graham Holmes conceptualized and designed the study, drafted the original manuscript, and revised the manuscript; Ms Rast conceptualized and designed the study, curated the data, carried out the analyses, and reviewed the manuscript; Ms Roux assisted in data interpretation, drafted the original manuscript, and provided supervision; Dr Rothman assisted in data interpretation, reviewed and edited the manuscript, and provided supervision; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
FUNDING: This project is supported by the Health Resources and Services Administration of the US Department of Health and Human Services under cooperative agreement UT2MC39440, Autism Intervention Research Network on Physical Health. The information, content, and/or conclusions are those of the authors and should not be construed as the official position or policy of or endorsement by the Health Resources and Services Administration, Department of Health and Human Services, or the US government. The funder did not participate in the work.
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