Using State Administrative Data to Examine Aspects of Autistic Adult Life: A Comparative Analysis of Identification,Voting,Marriage,and Parenting

Abstract

Background:

Existing outcomes research on autistic adulthood focuses primarily on certain aspects of adult life (e.g., employment) and is limited by methods that are often not representative of whole populations. In the current study, we aimed to use available state administrative data to examine frequencies of receiving state identification, voting, marriage/partnership, and parenting.

Methods:

In this cross-sectional, population-based study, we accessed Utah state administrative data for 7404 autistic adults born from 1970 to 2002 and matched 1:3 to non-autistic adults (N = 22,213). We identified proportions of documentation of ever achieving each outcome (state identification, voting, marriage/partnership, parenting) and differences by group, sex, race, ethnicity, and co-occurring intellectual disability.

Results:

Autistic adults were less likely to have state identification (54.9% vs. 97%, p < 0.001) and to vote (39.4% vs. 51.9%, p < 0.001). However, among only those who had state identification, autistic adults were more likely to vote (55.2% vs. 53.1%, p < 0.05). Autistic males were more likely than autistic females to have state identification and equally likely to vote. Autistic females were more likely than males to be married/partnered and to have offspring. We also observed that married/partnered autistic adults were more likely to divorce than married/partnered non-autistic adults (21.0% vs. 6.1%, p < 0.001). When they had offspring, autistic adults had slightly fewer children on average than non-autistic adults (1.69 vs. 2.00, p < 0.001). There were also racial and ethnic group differences among autistic adults across outcomes. In a subset of the data, individuals with co-occurring intellectual disability were less likely than other autistic Utahns to achieve each studied outcome.

Conclusion:

We found significant differences, indicating that autistic adults are less engaged in multiple aspects of adulthood than their non-autistic peers. Findings point to the need for efforts to better support autistic adult self-determination and to address barriers to achieving the studied outcomes, when desired by autistic individuals.

Community Brief

Why is this an important issue?

Studies on autistic adult outcomes usually focus on certain areas of adulthood, such as employment. There are also very few studies that have looked at adult outcomes for a whole U.S. state population of autistic adults. State-wide administrative data can be a useful resource to use to see if autistic adults have had access to the same opportunities as non-autistic adults.

What was the purpose of this study?

The purpose of this study was to use statewide data to look at how many autistic adults have state identification, have voted, have been married or partnered, and have been parents. And we wanted to see if those findings differed between autistic and non-autistic adults. We also wanted to see if there were differences in the autistic population based on sex, race, ethnicity, and co-occurring intellectual disability.

What did the researchers do?

The researchers accessed Utah state administrative data for 7404 autistic adults and 22,213 non-autistic adults, born from 1970 to 2002. We looked to see if individuals ever had state identification (driver’s license or state ID), ever voted, ever married or partnered, and ever had offspring (children). Then we compared autistic and non-autistic groups, autistic males and females, and autistic adults based on race and ethnicity to look for any differences.

What were the results of the study?

Autistic adults were less likely than non-autistic adults to have state identification and to vote. However, having state identification was very important for voting. When we looked at everyone who had state identification, autistic adults with identification were more likely to vote. Autistic males were more likely than autistic females to have identification, and they were equally likely to vote. Autistic females were more likely than autistic males to be married/partnered and to parent. We also observed that married/partnered autistic adults were more likely to divorce than non-autistic adults. Autistic adults had slightly fewer children on average than non-autistic adults. There were also racial and ethnic group differences across outcomes. Whether or not autistic adults had co-occurring intellectual disability also made a difference.

What do these findings add to what was already known?

There was very little research about how common these outcomes are for autistic adults. This study adds new knowledge about similarities and differences in state identification, voting, marriage, and parenting for autistic adults.

What are potential weaknesses in the study?

We were restricted in this study to the available data. We do not know about autistic people who did not have a medically documented diagnosis. We also were unable to look at potential differences related to LGBTQ+ identity or co-occurring conditions. The results might look different in other states.

How will these findings help autistic adults now or in the future?

Our findings suggest that there may be reduced opportunity for autistic adults to achieve some adult outcomes, and further limited opportunities for some subgroups of autistic adults. Understanding these group differences can help direct advocacy and development of new resources to support autistic adults.

Background

Research on autism in adulthood has grown significantly in the last two decades,¹ increasing opportunities to learn about and better understand autistic adults’ lives and potential needs.² Adult life outcomes have often been measured in autism research by studying the extent of autistic adults’ participation in employment, independent living, and/or social relationships.^3–6 However, these domains do not encompass everything that may be relevant to or important in autistic adults’ lives.^7–9 Furthermore, much of the existing research uses nonrepresentative survey or clinical cohort methods to examine areas of autistic adult life.^10,11 Such methods have the benefits of autism-specific foci and measures but often can miss segments of the diagnosed population. Population-level data have the potential to provide novel information about patterns across all people in a geographic region with an autism diagnosis while being constrained to available data resources.

In the current study, we aimed to use state administrative data available population-wide to examine multiple aspects of adult life that have been less well studied in the autism literature. Specifically, based on data availability and hypothesized associations, we focus here on autistic adults: receiving state identification, voting, marrying/partnering, and parenting.^a The outcomes examined in the present study are connected to some of the capabilities that Pellicano et al. described as supportive of autistic flourishing (e.g., bodily integrity, affiliation, agency).¹² Examination of population-wide data can allow new understanding of potential differences that could inform future research to elucidate discordance between desired versus actual participation and the subsequent development of supports to meet individuals’ goals.

Identification

Having identification can be critical for several aspects of adult life, including employment, opening a bank account, traveling, and accessing community events. There is limited literature on how common it is for autistic adults to have or not have a form of state identification or another widely accepted form of identification (e.g., passport). However, the most common form of state identification is a driver’s license, and there is some existing literature on acquiring driver’s licenses among autistic individuals. Curry et al. identified that about one-third of autistic adolescents in a New Jersey cohort received a driver’s license—significantly less than 83.5% of non-autistic comparators.¹³ When they did get a license, they did so a median of 9.2 months later.¹³ The U.S. representative National Longitudinal Transition Study-2 (NLTS2)¹⁴ similarly found 33.4% of autistic young adults had a driver’s license, which was significantly less than seen across several other disability categories. One study that tested for sex differences related to rates of driving among autistic teens did not identify any.¹⁵

Voting

Voting has received limited attention in autism research. In the NLTS2, 55.4% of autistic young adults were registered to vote, which was among the lowest across disability categories.¹⁴ Graham Holmes et al. conducted a survey with parents of autistic youth and examined preparation for voting as one of several areas supporting preparation for adulthood.¹⁶ In that study, autistic male youth were more likely than autistic female youth to be educated about citizenship through classes about civics and/or discussions about politics and voting.¹⁶ They also identified differences by intellectual disability status, finding that youth with intellectual disability were significantly less likely to be prepared for voting.¹⁶ Song et al. examined autistic and non-autistic adults’ frequency, importance, breadth, and sufficiency of participation in 22 community activities.¹⁷ One of their included activities was civic/political engagement, which was rated low in terms of both participation and importance by autistic adult survey participants.¹⁷ However, in their study, civic/political engagement was considered a social activity, and thus may be viewed differently than participating in voting.¹⁷ While there is limited evidence comparing autistic and non-autistic individuals’ voting history, Butel discussed how autistic individuals—similar to many others with disabilities—are disenfranchised and often not legally able to or empowered to vote.¹⁸ Disenfranchisement may occur through the guardianship process, lack of education and preparation, and/or through physical, communication, and sensory barriers to voting.¹⁸

Marriage

Population-based research on marriage rates among autistic adults is limited. However, the broader literature on romantic and sexual relationships among autistic adults demonstrates that many autistic adults are interested in relationships yet may face challenges with social factors, communication, and sensory processing.^19–22 Furthermore, autistic adults—along with other disability populations—may face financial penalties for being married (e.g., reduced social security benefits for two married disabled individuals, referred to as the “disability marriage penalty”).²³ Thus, despite limited population-based data, low rates of marriage are expected among autistic adults. An analysis from an earlier autistic adult cohort study (N = 169) in Utah reported a marriage rate of about 5%.²⁴ In the NLTS2, 0.9% of autistic young adults were married up to eight years after exiting high school, the lowest of any disability category.¹⁴

Parenting

In the NLTS2, 3.0% of autistic young adults had a child up to eight years after exiting high school, the lowest of any disability category.¹⁴ Beyond that, there is limited evidence about how common it is for autistic adults to parent. However, a 2021 review by McDonnell and DeLucia identified eight articles about parenting experiences.²⁵ Most research focused on autistic female experiences of parenting.²⁵ Challenges identified by McDonnell and DeLucia included negative pregnancy experiences (e.g., health care barriers, peri- and postpartum depression, and complications), isolation during parenting, judgment from professionals, and inadequate support.²⁵ However, despite challenges, many autistic parents found the experience rewarding.²⁵ One study looked at sex differences in autistic parenting experiences, noting lower levels of parental self-efficacy among autistic male versus female parents.²⁶

Study purpose

In the current study, we used population-wide administrative data in the U.S. state of Utah to explore holding state identification, voting, marriage/partnership, and parenting, as well as associations with demographic factors, co-occurring intellectual disability, and comparisons between autistic and non-autistic adults across the state. Given existing knowledge about differences, we hypothesized that autistic adults would have lower proportions of engagement across all the examined aspects of adult life when compared with non-autistic adults. We also hypothesized sex, race, and ethnicity differences, but given the limited existing research, this hypothesis was nondirectional. In subset analyses, we hypothesized that autistic adults with versus without co-occurring intellectual disability would have less engagement in the examined aspects of adult life. We anticipated that understanding these multiple aspects of autistic adult life at a population level could help to identify potential needs for services and supports, as well to as inform future directions for research.

Methods

This cross-sectional analysis utilized securely linked administrative data from the state of Utah. The University of Utah Institutional Review Board, the Utah Resource for Genetic and Epidemiological Research, and the Utah Registry of Autism and Developmental Disabilities (URADD) Oversight Committee approved this study.

Data sources

The primary source of data for this study was the Utah Population Database (UPDB), a large, statewide database containing demographic, vital records, medical and genealogical data. The UPDB can internally link to other compatible data sources, following strict protocols to protect data security. For the present analyses, data linked from multiple sources through the UPDB included state identification (presence/absence only), voting history (presence/absence only), marital/partnership status, birth certificates (number of times listed as a parent), and autism status. The UPDB staff conducted all data linkages for this study. Study investigators used secure virtual environments for analysis and accessed only partially identifiable data (defined as dates that include month and year).

To identify autistic individuals, the UPDB linked to URADD, a statewide registry of individuals with an autism diagnosis. The state of Utah established URADD to conduct state- and population-wide ascertainment for autism, under Utah Health Code Chapter 26 Title 7 Section 4. Autism status in URADD is determined based on the presence of a community-based medical diagnosis of autism, documented anywhere in the electronic data warehouses of all major health care providers in the state, including the Utah Department of Health and Human Services, private/public clinics and hospitals, and behavioral health centers. URADD queries these sources for an autism diagnostic code (i.e., ICD-9 299.X or ICD-10 F84.X) on a biannual basis. Bakian et al. validated URADD’s case ascertainment procedure, finding 96.4% specificity and 81.7% sensitivity (highly superior to 58.5% sensitivity when requiring two diagnostic codes).²⁷ For this study, the UPDB securely linked URADD data to other UPDB data sources through anonymous numeric case identifiers.

Sample

The sample for the present analyses included a population-derived sample of individuals identified through URADD born in 1970 or after, and who were at least 18 years old at the time of data extraction (2020). The UPDB staff then generated a non-autistic comparison group matched 3:1 based on birth year, sex, and whether they were born in or out of the state. We required that the non-autistic individuals did not have an autism diagnosis in their health care record and that they were documented to live in the state for the same length of time (in years) as the reference autistic individual to allow for maximally comparable data.

Variables

We included the following available demographic variables: sex, birth decade, age at time of data extraction (or at death, where relevant), race, and Hispanic ethnicity. We treated the target outcomes as binary variables, including holding state identification, voting, marriage/partnership, and parenting, as well as continuous variables, including first age of voting and number of children. State identification information came from the Utah Department of Public Safety Driver License Division but did not distinguish whether the holder held a driver’s license or a different form of state identification (i.e., nondriver identification). Voting information indicated whether the individual has ever voted and the first time they voted; the investigator team did not have access to information on party registration or specific voting actions. Marriage and partnership status could have come from a variety of sources that link to the UPDB, including marriage certificates, birth certificates, and health care administrative data. A variety of marital/partnership statuses were populated in the data; the investigator team simplified the data to create the following two binary variables: married/partnered ever and divorced ever. Data on parenting came from birth certificates and indicated whether an individual was listed as a parent on any Utah birth certificate; we created a binary variable to indicate parent status and a continuous variable to indicate the number of offspring.

Data analysis

We used SPSS (Version 29) for data management and analysis. To examine the proportions of each target outcome, we calculated percentages and conducted chi-square tests to compare the frequencies of outcomes in autistic versus non-autistic groups. Comparisons were also stratified by sex, race, and ethnicity. We calculated means and standard deviations for continuous variables and conducted comparisons using t-tests. To understand the data further, we also reduced the consideration set where relevant to examine voting among just those with state identification, divorce among just those who had been married/partnered ever, and parenting among those who had been married/partnered ever. To examine the relationship between status in the autistic group and each outcome, we formulated multivariable logistic regression models accounting for age, sex, and birth decade. We used an alpha of 0.05 for significance testing and 95% confidence intervals (CIs) for odds ratios (OR) from the logistic regression analyses. Missing data were minimal except for the race and ethnicity variables (see Table 1), and we employed available case analysis throughout.

Table 1.

Sample Demographic Characteristics and Descriptive Statistics on Variables of Interest in Autistic and Non-Autistic Populations, with Group Comparisons

	Autistic Number (%) N = 7404	Non-autistic Number (%) N = 22,213	Comparison χ² or t-test statistic
Sex			0.0
Male	5699 (77.0%)	17,080 (76.9%)
Female	1703 (23.0%)	5127 (23.1%)
Age: M (SD)	24.7 (6.7)	24.8 (6.8)	−1.0
Birth Decade			0.2
1970s	332 (4.5%)	1007 (4.5%)
1980s	849 (11.5%)	2584 (11.6%)
1990s	4065 (54.9%)	12,179 (54.8%)
2000s	2158 (29.1%)	6443 (29.0%)
Race			80.6^***
White	6042 (81.6%)	17,222 (77.5%)
Black or African American	72 (1.0%)	171 (0.8%)
American Indian or Alaska Native	19 (0.3%)	114 (0.5%)
Asian	^a	85 (0.4%)
Native Hawaiian or other Pacific Islander	^a	56 (0.3%)
Multiple races	373 (5.0%)	1187 (5.3%)
Unknown	877 (11.8%)	3378 (15.2%)
Ethnicity			151.3^***
Hispanic	1503 (20.3%)	4912 (22.1%)
Non-Hispanic	4413 (59.6%)	11,512 (51.8%)
Unknown	1488 (20.1%)	5789 (26.1%)
State identification			8419.8^***
Has state identification	4063 (54.9%)	21,546 (97.0%)
No state identification	3341 (45.1%)	667 (3.0%)
Voting history			351.0^***
Has voting history	2914 (39.4%)	11,534 (51.9%)
No voting history	4490 (60.6%)	10,679 (48.1%)
Earliest voting age: M (SD)	20.8 (3.8)	21.5 (4.3)	−7.4^***
Marriage/Partnership history			955.5^***
Marriage/partnership	353 (6.3%)	4126 (25.6%)
No marriage/partnership	5295 (93.8%)	12,015 (74.4%)
Divorce
Divorce	74 (1.3%)	252 (1.6%)	1.8
Divorce (percent of ever married)	(21.0%)	(6.1%)	106.3^***
Offspring
Child	304 (4.1%)	4719 (21.2%)	1158.2^***
Child (number and percent of ever married)	194 (55.0%)	3703 (89.7%)	348.1^***
Number of children: M (SD)	1.7 (1.0)	2.0 (1.2)	−4.6^***

^***

p < 0.001.

Counts suppressed according to data agreement guidelines.

M, mean; SD, standard deviation.

Subset analyses to examine co-occurring intellectual disability

We conducted additional analyses to examine the influence of co-occurring intellectual disability on the studied outcomes. We identified autistic individuals who had an intellectual disability code (i.e., International Classification of Diseases [ICD]-9 317–319 or ICD-10 F70-79) in their records from some of the accessible medical sources: inpatient hospitals, emergency departments, and ambulatory surgery facilities throughout the state, as well as the University of Utah health care system. We did not have access to intellectual disability status from other sources that populate autism diagnostic status in the URADD registry. Therefore, we created a subset of the data, including only those autistic individuals who had an autism and/or intellectual disability ICD code from the aforementioned sources. Within the subset, we calculated proportions and chi-square statistics comparing autistic individuals with and without a documented intellectual disability code for each examined outcome. We also repeated the multivariable logistic regression models in the subset examining the influence of intellectual disability status rather than autism diagnosis.

Results

The sample included 7404 autistic individuals and a 1:3 matched group of 22,213 non-autistic individuals. Over half the sample was born in the 1990s, with about a quarter born in the 2000s, and the remainder born before 1990. In line with population estimates of autism diagnoses for these age groups, 77% of the sample was male. Consistent with the matching procedure, the autistic and non-autistic groups did not differ on sex, age, or birth decade. The groups differed slightly on race and ethnicity, with slightly more White and non-Hispanic individuals in the autistic group and more individuals of unknown race and ethnicity in the non-autistic group. A detailed sample description is given in Table 1.

State identification

We found that the vast majority (97%) of non-autistic individuals held state identification, whereas only slightly more than half (54.9%) of autistic individuals held state identification (χ² = 8419.81, p < 0.001). Autistic males (56.1%) were significantly more likely to hold a state identification than autistic females (51.0%; χ2 = 13.74, p < 0.001), while there were no sex differences in the non-autistic group (χ² = 1.71, p > 0.05). See Tables 1 and 2 for additional details. In the autistic group, White autistic people were most likely to hold state identification (55.3%), followed by people classified as unknown (55.0%) and multiple races (53.1%; χ² = 15.04, p < 0.05). There were no significant differences in the percentage holding state identification based on Hispanic ethnicity in the autistic group. Consistent with the chi-square results, autistic individuals had a much lower odds of holding state identification than their non-autistic counterparts in a multivariable logistic regression model (OR: 0.04, 95% CI: 0.03–0.04; see Table 3).

Table 2.

Autistic Male and Female Frequencies and Percentages of State Identification, Voting History, Marriage/Partnership, and Parenting, with Sex Comparisons

	Autistic males Number (%) N = 5699	Autistic females Number (%) N = 1703	Comparison χ² or t-test statistic
State identification			13.7***
Has state identification	3195 (56.1%)	868 (51.0%)
No state identification	2504 (43.9%)	835 (49.0%)
Voting history			0.4
Has voting history	2254 (39.6%)	660 (38.8%)
No voting history	3445 (60.4%)	1043 (61.2%)
Earliest voting age: M (SD)	20.72 (3.68)	21.19 (4.10)	2.6**
Marriage/Partnership history			24.2***
Marriage/partnership	229 (5.4%)	124 (9.1%)
No marriage/partnership	4049 (94.6%)	1246 (90.9%)
Divorce
Divorce	45 (1.1%)	29 (2.1%)	9.1**
Divorce (percent of ever married)	45/229 (19.7%)	29/124 (23.4%)	0.7
Offspring
Child	174 (3.1%)	130 (7.6%)	69.9***
Child (number and percent of ever married)	115/229 (50.2%)	79/124 (63.7%)	5.9*
Number of children: M (SD)	1.62 (1.01)	1.78 (1.07)	1.4

*p < 0.05; **p < 0.01; ***p < 0.001.

M, mean; SD, standard deviation.

Table 3.

Logistic Regression Analyses Examining Contribution of Autism Diagnosis to Likelihood of State Identification, Voting, Marriage, and Parenting Outcomes, Accounting for Covariates

	Odds ratios (95% confidence intervals)
	Identification	Voting	Marriage	Parenting
Autism Diagnosis	0.04 (0.03–0.04)	0.55 (0.52–0.59)	0.10 (0.08–0.11)	0.08 (0.07–0.09)
Covariates
Age	1.03 (1.01–1.05)	1.16 (1.15–1.18)	1.34 (1.32–1.36)	1.28 (1.27–1.30)
Male sex	1.24 (1.13–1.36)	0.96 (0.87–0.98)	0.58 (0.52–0.64)	0.50 (0.46–0.54)
1970s birth	Reference	Reference	Reference	Reference
1980s birth	0.46 (0.33–0.64)	2.93 (2.41–3.56)	7.17 (5.67–9.06)	7.05 (5.74–8.65)
1990s birth	0.51 (0.33–0.79)	5.26 (4.07–6.80)	11.10 (7.93–15.52)	9.12 (6.77–12.28)
2000s birth	0.36 (0.03–0.04)	3.25 (2.39–4.42)	3.98 (2.43–6.50)	2.03 (1.31–3.16)

Significant results bolded.

Voting

We found that just over half (51.9%) of non-autistic individuals have ever voted compared with 39.4% of autistic individuals (χ² = 351.03, p < 0.001). While females were more likely than males to ever vote in the non-autistic group (55.1% vs. 51.0%; χ² = 27.36, p < 0.001), autistic females and males showed similar voting percentages (38.8% vs. 39.6%; χ² = 0.35, p > 0.05). See Tables 1 and 2 for additional details. In the autistic group, Asian autistic people were most likely to have ever voted (55.0%) followed by White autistic people (51.5%; χ² = 36.85, p < 0.001), and autistic people of unknown ethnicity were most likely to ever vote (41.7%) compared with Hispanic (36.0%) and non-Hispanic (39.7%) individuals (χ² = 10.69, p < 0.01). In a multivariable logistic regression model, the odds of autistic people ever voting were significantly lower than their non-autistic counterparts (OR: 0.55, 95% CI: 0.52–0.59; see Table 3).

However, when accounting for whether individuals held state identification, a larger percentage of autistic individuals with identification (55.2%) ever voted compared with non-autistic individuals with identification (53.1%; χ² = 5.74, p < 0.05). After adding state identification to the multivariable logistic regression, we found that the odds of an autistic individual ever voting were about five times higher compared with their non-autistic counterparts (OR: 5.41, 95% CI: 4.89–5.99).

The autistic group who ever voted was slightly younger at first age of voting (M = 20.83 [standard deviation or SD = 3.79]) compared with the non-autistic group who ever voted (M = 21.53, SD = 4.32; t = 8.05, p < 0.001). Within the autistic group, autistic females were slightly older at first age of voting (M = 21.2 [SD = 4.1]) compared with autistic males (M = 20.7 [SD = 3.7]; t = 2.62, p < 0.01).

Marriage/partnership

Autistic people were significantly less likely to have ever been documented as married or partnered (6.3%) compared with the non-autistic group (25.6%; χ² = 955.54, p < 0.001). Autistic females (9.1%) were significantly more likely than autistic males (5.4%) to have ever been married or partnered (χ² = 24.22, p < 0.001). There were no racial differences in rates of marriage/partnership in the autistic group (χ² = 12.74, p > 0.05), while Hispanic autistic people were more likely to have marriage/partnership (8.1%) compared with non-Hispanic individuals (6.2%) and those of unknown ethnicity (2.2%) (χ² = 23.14; p < 0.001). Autistic and non-autistic individuals were equally likely to experience divorce (1.3% vs. 1.6%; χ² = 1.79, p > 0.05). However, among only those individuals who were ever married or partnered, autistic individuals were proportionally much more likely to experience divorce (21.0% vs. 6.1%; χ² = 106.34, p < 0.001). Autistic females were more likely to experience divorce than males (χ² = 9.10, p < 0.01) given their higher rate of marriage/partnership, but when that was taken into account, autistic females and males were equally likely to experience divorce (χ² = 0.68, p > 0.05). See Tables 1 and 2 for additional details. Consistent with the chi-square results, the odds of marriage were highly reduced in autistic individuals compared with non-autistic individuals in the multivariable logistic regression model (OR: 0.10, 95% CI: 0.08–0.11; see Table 3).

Parenting

Autistic people were significantly less likely to be a listed parent on a birth certificate (4.1% vs. 21.2%; χ² = 1158.15, p < 0.001). Among those who had children, autistic people had slightly fewer children on average (M = 1.69 [SD = 1.04]) than non-autistic people (M = 2.00 [SD = 1.16]; t = −4.587, p < 0.001). Autistic individuals of multiple races were most likely to have children (7.0%) followed by Asian autistic people (6.7%; χ² = 53.24, p < 0.001), and Hispanic autistic people were more likely to have a child (6.9%) compared with non-Hispanic individuals (4.4%) and those of unknown ethnicity (0.5%) (χ² = 79.70; p < 0.001). See Tables 1 and 2 for additional details. Consistent with the chi-square results, the odds of autistic individuals being listed as a parent on a birth certificate were considerably lower than their non-autistic counterparts in a multivariable logistic regression model (OR: 0.08, 95% CI: 0.07–0.09; see Table 3).

To examine the connection between marriage/partnership and parenting, we also reduced consideration to only those with evidence of marriage or partnership. Over half of partnered autistic people (55.0%) had a child, compared with 89.7% of partnered non-autistic people (χ² = 348.14, p < 0.001). As expected, not all individuals who had a child were married/partnered.

Intellectual disability subset analyses

We identified a subset of 1821 autistic individuals with an autism and/or intellectual disability code in the available ICD records: 632 (34.7%) with an intellectual disability code and 1189 (65.3%) without one. Comparing those with and without intellectual disability, there were no significant differences in the proportion of males (73.7% and 77.4%, respectively) and females (26.3% and 22.6%, respectively) (χ² = 3.01, p = 0.083). Autistic adults with versus without intellectual disability were significantly less likely to have state identification (22.5% vs. 52.6%; χ² = 154.13, p < 0.001), vote (23.7% vs. 44.1%; χ² = 73.20, p < 0.001), and to parent (<2%^b vs. 2.6%; χ² = 5.70, p = 0.017). The raw difference between rates of marriage/partnership were not significant between those with and without intellectual disability (2.3% vs. 4.2%; χ² = 3.69, p = 0.055). However, in multivariable models, intellectual disability status was associated with significantly reduced likelihood of marriage/partnership, along with reduced likelihood of state identification and voting (see Table 4); we did not conduct multivariable modeling for parenting in this subset due to the small sample size.

Table 4.

Logistic Regression Analyses Examining Contribution of Co-Occurring Intellectual Disability to Likelihood of State Identification, Voting, and Marriage Outcomes Among a Subset of Autistic Adults, Accounting for Covariates

	Odds ratios (95% confidence intervals)
	Identification	Voting	Marriage
Intellectual Disability Status	0.11 (0.08–0.15)	0.20 (0.15–0.26)	0.22 (0.11–0.44)
Covariates
Age	1.10 (1.05–1.14)	1.10 (1.05–1.14)	1.09 (0.99–1.21)
Male sex	1.09 (0.86–1.40)	1.06 (0.83–1.36)	0.36 (0.20–0.65)
1970s birth	Reference	Reference	Reference
1980s birth	0.31 (0.17–0.58)	1.49 (0.84–2.63)	1.31 (0.40–4.26)
1990s birth	0.35 (0.14–0.88)	1.80 (0.75–4.34)	0.41 (0.05–3.55)
2000s birth	0.36 (0.11–1.13)	0.55 (0.18–1.67)	0.23 (0.11–4.66)

Significant results bolded.

Discussion

In the current study, we utilized population-wide administrative data to examine aspects of autistic adult life in one U.S. state. Through examination of proportions holding state identification, voting, marriage/partnership, and parenting, we aimed to understand similarities and differences between autistic and non-autistic adults in the population and also examine potential sex and race/ethnicity differences related to these outcomes. Across the study, we observed that autistic adults do hold identification, vote, get married, and parent. However, proportionally fewer autistic adults engage in each of these outcomes when compared with non-autistic adults. Furthermore, although we did not compare autistic adults with adults with other types of disabilities in the current study, our findings should be considered in the light of NLTS2 findings, which demonstrated that autistic adults had among the lowest rates of all of our examined outcomes when compared with other disability groups.¹⁴

Overall, our findings point to a need for increased understanding of why autistic adults are less engaged in these activities—is it aligned with their wishes and needs, or due to limited opportunities? If the latter, this may indicate a need for supports and services tailored for autistic people to support their self-determination and skills to access these aspects of adulthood.²⁸ Viewed through a social model of disability lens, our findings could signal contextual barriers that autistic youth and adults face in having opportunities to learn about, prepare for, and achieve these outcomes.²⁹ Research demonstrates that low expectations, limited education, stigma, and accessibility limitations all could play a role in decreasing opportunities for autistic individuals to achieve outcomes aligned with their goals.^16,30–32

Identification

We found that significantly fewer autistic adults held state identification compared with non-autistic adults. This difference places autistic adults at a disadvantage in accessing multiple aspects of adult life, including employment, financial independence, travel, and community activities, and can limit self-determination.²⁸ Evidence from several states demonstrates that a small proportion of individualized education plans for transition-aged autistic youth contain a goal about securing a form of identification,³³ while having an IEP goal can predict achieving the outcome.¹⁵ Although we do not specifically know whether individuals in the current study held a driver’s license or nondriver identification, existing evidence also suggests differences in access to driving for autistic adults.¹³ Interestingly, Curry et al.’s findings suggest that license-related decisions are primarily made before getting a permit.¹³ Furthermore, health care providers report being less likely to discuss transportation (including driving) with autistic versus other patients.³⁴ Thus, driving decisions may ultimately be made for autistic youth and adults early on rather than by or with them.

Voting

Relatedly, we found that state identification was significantly related to voting—an important right of citizens. Although autistic adults were significantly less likely overall to vote, we found that having state identification may be critical. In this study, autistic individuals with identification were over five times more likely to have ever voted compared with non-autistic individuals with identification in a multivariable model. Thus, an important step for enfranchisement may be taking steps, as described above, to support autistic individuals to get state identification. Other approaches to support removing barriers to voting may be informed by Syed et al. who described recommendations from disability voting rights advocates for designing more accessible elections.³⁵

Marriage/partnership and parenting

Autistic adults in this study were significantly less likely to be married and to be parents than non-autistic adults. While it is unknown whether this particular sample of autistic individuals may desire more marriage and parenting opportunities, existing research suggests patterns of frustration and dissatisfaction for autistic adults related to these life experiences.^19,21,22 Thus, there is a need to support autistic adults who want to engage in marriages/partnerships and/or parenting but face challenges in doing so. Furthermore, the proportion of divorces among those who have been married may suggest a specific need for marital counseling and divorce-related supports for autistic adults and their families during stressful relationship experiences. DeWinter et al. summarized stakeholder perspectives on priorities for future research related to autism, sexuality, and intimate relationships finding How to support healthy and satisfying romantic relationships? as the highest priority.³⁶ In a study of research priorities for autistic adults, Gotham et al. identified romantic relationships as moderate-to-high importance and marriage or family therapy as moderate importance.³⁷ There is also evidence of the need for improved sexuality and relationship education for autistic individuals.³⁸ Rothman et al. recently described the feasibility and early support for Healthy Relationships on the Autism Spectrum, a program designed to promote healthy relationship development for autistic individuals.³⁹

Differences by sex, race, and ethnicity

Thanks to our population-based approach, we also had the opportunity to examine differences by sex and by race and ethnicity, which has been extremely limited in existing research. Autistic males were more likely to hold state identification, whereas autistic females were more likely to be married/partnered and be a listed parent on a birth certificate. We speculate that these findings may possibly relate to traditional sex stereotypes,^40,41 reflecting higher expectations for males to drive and work (requiring identification) and for females to engage in family activities.

We identified racial differences, such that White autistic adults were more likely to hold state identification and both White and Asian autistic adults were more likely to have ever voted than other racial groups. Both multiracial and Asian autistic people were most likely to be a listed parent on a birth certificate. Autistic people with Hispanic ethnicity were more likely to have been married/partnered and to be a listed parent on a birth certificate. We speculate that our findings on racial and ethnic differences may reflect differential access to information and resources (i.e., a form of institutional discrimination),⁴² as well as variations in cultural expectations and influences related to adulthood.⁴³ However, it is also important to note that the autistic group was more likely to be White and non-Hispanic, and thus differences in access to diagnosis and related services may have also influenced the findings.

Differences by intellectual disability status

Prior research on the studied outcomes for autistic adults with intellectual disability is limited. Our findings in a subset of the population indicate that autistic people with co-occurring intellectual disability are significantly less likely to receive state identification, vote, marry/partner, and parent—much less so than the broader autistic population in Utah.

A lack of state identification could potentially limit autistic people with co-occurring intellectual disabilities access to community activities and opportunities. Education about voting made accessible to those with intellectual disability could promote enfranchisement and options to participate in civic life. Agran et al. previously conducted a study of 28 adults with intellectual disability, finding that they were interested in voting and wanted to be included, but did not receive adequate support.⁴⁴ Furthermore, a policy brief by Schriner and Ochs emphasized the critical nature of voting rights for the self-determination of people with intellectual and developmental disabilities.⁴⁵

Our findings also contribute to the literature on sexuality and relationships among autistic individuals with intellectual disability. Prior research shows that healthy sexual expression for this population can be limited by exclusion, concerns around victimization, and stigma.³⁸ However, there is emerging evidence about the value of tailored sexuality and relationship education, with significant need for more research and development to best meet the needs of this population.³⁸

Strengths and Limitations

Our use of administrative data is a strength in that it allowed for complete capture of those who have received a medical diagnosis of autism within a whole state population. Much of the available literature uses convenience samples, clinical samples, and voluntary registries, which may not fully represent the diagnosed population. This study represents progress in understanding certain community participation outcomes among a wide range of diagnosed autistic adults. However, autistic individuals who have not received an autism diagnosis through the health care system or received one out of state are not included in this sample and could potentially be included in the non-autistic group introducing bias toward the null. Despite this possibility, Utah previously showed high rates of childhood autism diagnosis compared with some other states,⁴⁶ potentially indicating good diagnostic capture in older cohorts. Other than examining intellectual disability among a subset of the population, we did not examine co-occurring conditions among the autistic sample and did not study disabilities or diagnoses in the matched non-autistic sample. Future work should consider other diagnoses and conditions in both autistic and non-autistic groups.

We are limited by the data that were available for use in this study. Notably, we did not have access to information about gender identity, and were limited to only examining sex differences. Future work would benefit from also examining gender differences. Furthermore, we have no information on LGBTQIA+ identity. Existing research indicates that autistic people are more likely to be LGBTQIA+ than non-autistic people,^47,48 which could have potentially impacted our findings related to marriage and parenting. Research should continue to explore the needs and priorities of LGBTQIA+ autistic adults. Similarly, the way that marriage/relationship data were captured in the UPDB may not have reflected the full range of relationship types that autistic adults may engage in or provide a complete ascertainment of marriage/partnership status. Furthermore, we do not know the extent to which parents listed on birth certificates are actively involved in parenting/child care. We also do not know if other individuals are actively involved in parenting/child care who were not listed as parents on a child’s birth certificate.

We also caution that while statewide data provide a comprehensive picture of one state, they do not necessarily generalize to other states. Demographic trends in Utah—such as having among the highest birth rates in the nation, being in the top-10 states for rates of marriage, and being in the top half of states for rates of divorce^49,50—may influence the relevance of our present findings to other states in the United States. Utah is also ranked 11th among state populations considered “highly religious” according to the Pew Research Center,⁵¹ with the Church of Jesus Christ of Latter Day Saints a dominant religion in the state. These demographic factors warrant consideration when evaluating relevance of the present findings to other state populations. State-specific autism services and policies also differ throughout the country, and could contribute to greater or lesser patterns of difference between autistic and non-autistic state populations. However, by conducting matched analyses within-state, our comparisons are among autistic and non-autistic people within the same context.

Importantly, the current study was limited by the fact that we did not know the priorities and wishes of the individuals whose data we described in this study. Thus, it is critical to continue to conduct survey and qualitative research that gather data directly from autistic adults to best understand their priorities and desires for their own adult lives. Services should also prioritize individualized goals tailored to the unique needs and preferences of each autistic individual, aiming to maximize person-environment fit.⁷

Conclusion

In the current study, we examined proportions of holding state identification, voting, marrying/partnering, and parenting among autistic and non-autistic adults in Utah. We found significant differences, indicating that autistic adults are less engaged in these aspects of adulthood than their peers. We do not know to what extent this reflects a discrepancy between desired and actual outcomes for autistic people in Utah. However, these findings may point to the need for concerted efforts to better support autistic adult self-determination and to address barriers through individual services and structural/institutional changes that emphasize empowering autistic youth and adults to achieve outcomes aligned with their individual goals.

Footnotes

Acknowledgments

The authors thank the Pedigree and Population Resource of Huntsman Cancer Institute, University of Utah (funded, in part, by the Huntsman Cancer Foundation) for its role in the ongoing collection, maintenance, and support of the UPDB. The authors thank the Utah health data sources who contributed essential information to inform the identification of autistic adults by the Utah Registry of Autism and Developmental Disabilities.

Authorship Confirmation Statement

A.V.K.: Conceptualization, analysis, and writing—original draft. D.A.B.: Conceptualization, writing—review and editing, and funding acquisition. C.N.: Analysis and writing—review and editing. W.M.M.: Conceptualization and writing—review and editing. A.V.B.: Conceptualization, writing—review and editing, resources, and funding acquisition. The article has been submitted solely to Autism in Adulthood.

Disclaimer

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or Centers for Disease Control and Prevention (CDC).

Author Disclosure Statement

D.A.B. has consulted for BioMarin Pharmaceutical Inc, Encoded Therapeutics, and Taysha Gene Therapies. A.V.K., C.N., W.M.M., and A.V.B. have no conflicts of interest to declare.

Funding Information

Investigator efforts on this project were supported by the CDC National Center on Birth Defects and Developmental Disabilities under contract NU53DD000009. The authors also acknowledge partial support for the UPDB through grant P30 CA2014 from the National Cancer Institute, University of Utah, and from the University of Utah’s program in Personalized Health and Utah Clinical and Translational Science Institute.

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