Mental health counseling is rated as most helpful by autistic adults: Service perspectives in adulthood

Abstract

The growing number of autistic adults challenges the limited adult service system. While data on service use and barriers are available, there is limited information from the individual’s perspective on which services are most helpful in adulthood and how service use is connected to community participation outcomes. Forty autistic adults participated in a study combining global positioning system community participation measures with survey and interview data on service use, including which services are most helpful in adulthood, barriers to services, and service needs. Participation outcomes were analyzed relative to demographics, number and types of services received in the past 2 years, and current mental health service use. Participants received an average of two services in the past 2 years, most frequently mental health and employment services. Individuals currently seeing a mental health counselor were more likely to be working full-time and visit more community locations compared to those who were not seeing a counselor. Participants reported mental health services as the most helpful service received in adulthood followed by employment services. While an emphasis is often placed on employment services in the transition to adulthood, findings suggest a need for integrated mental health and employment services for autistic adults.

Lay Abstract

The number of autistic adults is growing, but there are fewer services to support them in adulthood. Many autistic adults need some support services to lead successful adult lives. We know a lot about the services autistic adults use and some of the problems with using these services, but we do not know which services are most helpful to them and how the services they use relate to how they interact with their communities. Forty autistic adults took part in a study about service use and community participation. They completed surveys, interviews, and carried a global positioning system tracker. They answered questions about which services are most helpful in adulthood, things that make it hard to use services, and what services they needed. Most participants used two services in the past 2 years, most frequently mental health and employment services. Adults who were currently seeing a mental health counselor were more likely to be working full-time and visit more locations in the community compared to those who were not seeing a counselor. Mental health services were reported as the most helpful service they received as adults, followed by employment services. We often focus on the importance of employment services after high school, but our findings show a need for both mental health and employment services for autistic adults.

Keywords

adults autism community participation employment mental health psychiatric treatment service use

Autism is a lifelong condition characterized by social and communication differences, along with repetitive and restricted behaviors (American Psychiatric Association (APA), 2013). With improved early diagnosis, many autistic children receive early intervention services, primarily provided through school or health care settings (Shattuck & Grosse, 2007). It is well known, however, that the availability and accessibility of formalized support services precipitously declines after autistic individuals exit from the school system. In addition, the types of services used change over time. For example, while autistic children frequently receive behavioral and educational services (Hyman et al., 2020), caregivers reported the most frequently used adult health services as medication management, case management, mental health counseling, and social skills training (Turcotte et al., 2016). In adulthood, services move away from targeting therapeutic gains in behavior, speech, and function to focus on providing stability and connection to community resources.

This shift in services in adulthood reflects age-related changes in service needs, along with a narrowed criteria of eligibility and the reduced availability of adult services (Laxman et al., 2019). Prior research identifying service use, barriers, and ongoing service needs in adulthood points to gaps in adult services that can significantly impact health outcomes and quality of life (QOL; Damiano et al., 2014; Hewitt et al., 2012). It is becoming clear that there are inadequate formal and informal supports available for the growing number of autistic adults (Howlin & Taylor, 2015). However, missing from the research is what services are helpful for autistic adults, from their perspective, and any association between specific service use and adult outcomes. Current services for autistic adults vary by location but can range from direct support providers, skills groups, employment services, allied health therapies, day programming, transportation, and mental health services. Data from recent adult service use research indicate about half of autistic adults (45%–53%) use mental health services, while 34%–40% use employment services (Dudley et al., 2019; Schott et al., 2021).

Mental health and mental health services

Mental health services (i.e. assessment/diagnosis and individual and group counseling) are warranted as the high rate (70%–72%) of co-occurring psychiatric conditions among autistic youth (Rosen et al., 2018) often continues and may even increase in adulthood (Maddox et al., 2021). A longitudinal study following the service use of 204 autistic youth found little to no change in receipt of psychiatric and crisis services in the years before and after high school exit (Laxman et al., 2019). Large-scale studies of autistic adults report higher rates of psychiatric symptoms associated with anxiety, depression, schizophrenia, and other conditions compared to both non-autistic comparison groups and individuals with other developmental disabilities (Croen et al., 2015; Hollocks et al., 2019; Hudson et al., 2019; Weiss et al., 2018).

The high rates of comorbid mental health conditions in the autistic community correspond with decreased QOL (Lawson et al., 2020; Park et al., 2019) and increased mental health service use (Joshi et al., 2013). In longitudinal survey research following 40 autistic adults over a 20-month period, participants used an average of five health services. The most common services used included primary care, dentistry, counseling, psychiatry, and case management, with 80% reporting they had used at least one mental health service type (Vogan et al., 2017).

Most evidence-based mental health treatment adaptations have been based in cognitive behavioral therapy (CBT) with autistic youth and have helped manage or reduce symptoms related to anxiety, depression, and obsessive-compulsive disorder (Dickson et al., 2021; Stockall & Blackwell, 2022; Vause et al., 2020; Wood et al., 2020). In addition, group CBT interventions may improve QOL (Hesselmark et al., 2014) and emotion regulation (Kuroda et al., 2022) in autistic adults. With growing support for the need for mental health services in adulthood and increased rates of death by suicide, mental health is a current research priority in the autistic community and for the Interagency Autism Coordinating Committee (IACC, 2019; Cassidy et al., 2020). Beyond counts of types of services received or needed, research understanding the subjective experience of mental health service delivery from autistic adults can provide further information on the satisfaction with services received in adulthood and their perceived needs (Laxman et al., 2019). Furthermore, understanding how mental health services impact long-term functioning (e.g. community participation) is missing from the literature and needed to establish the outcomes associated with these services beyond symptom reduction.

Employment and employment services

In addition to high rates of comorbid psychiatric conditions, autistic adults have high rates of unemployment and underemployment (Ohl et al., 2017), yet employment services are not always reported in adult services research. Researchers have examined evidence-based supports and services to address poor employment outcomes among autistic adults. For example, vocational rehabilitation (VR) provides services to individuals with disabilities to improve employment outcomes. Competitive employment rates among autistic individuals following VR services range from 37% to 52% (Alverson & Yamamoto, 2017; Chen et al., 2015). Among autistic youth specifically, approximately 50% secure employment after exiting VR services (Kaya et al., 2018; Migliore et al., 2014). However, only 50% of youth who are referred to VR receive their services (Migliore et al., 2014), indicating low service utilization.

In addition to VR services, other employment services, such as Individual Placement and Support (IPS) have some evidence of efficacy (Schall et al., 2020). IPS is a supported employment approach that involves a quick job search and placement, involvement of both mental health and employment services, and emphasizes individual preference (Drake et al., 2012; Wallstroem et al., 2021). In a pilot study of five autistic individuals using the IPS approach, all participants achieved employment at the study conclusion (McLaren et al., 2017). Project Search + ASD Supports (i.e. a program that provides autistic high school students with internships and social assistance) as well as the supported employment approach are both associated with positive employment outcomes (Schall et al., 2020). Customized employment is another approach which involves creating a new job specifically for an individual with a disability in a work setting (Riesen et al., 2015). In a sample of 64 autistic adults, 63 obtained competitive employment through a customized employment approach (Wehman et al., 2016).

Being employed in a community setting is one example of how autistic adults participate in their communities. Employment necessitates being physically present in the community and interacting with others, which can lead to meaningful social connections (Chan et al., 2023). Community participation is associated with better health outcomes, social participation, and QOL (Bath & Wakerman, 2015; Smith et al., 2021; Williams et al., 2021). A systematic review of social participation of autistic adults identified the presence of meaningful daytime activity and perceived informal support as the most important factors contributing to QOL (Tobin et al., 2014). However, in some cases, up to 50% of participants had no regular daytime activities or occupation. While employment and mental health services exist, there are often barriers contributing to low service utilization.

Service use barriers

While some autistic adults are accessing services with positive outcomes, many experience barriers. When young adults graduate from high school, many experience an abrupt end to services (Anderson et al., 2018; Laxman et al., 2019). Past research has documented the high rates of unmet service needs in adulthood from both the caregiver (Dudley et al., 2019; Schott et al., 2021) and autistic adults’ perspective (Schott et al., 2021; Vogan et al., 2017), with reports of unmet need for services ranging from 50% to 75%, respectively. Specific barriers to services include bureaucratic challenges, a mismatch between available services and individual needs, communication difficulties with clinicians, and lack of knowledge about where to access services (Anderson & Butt, 2018; Dudley et al., 2019). Certain demographic and other individual factors are associated with low service use as well. For example, Black and Hispanic individuals use fewer services and have more unmet services needs compared to White individuals (Schott et al., 2021). In addition, adults living in residential facilities are more likely to receive services compared to those living with family (Dudley et al., 2019; Schott et al., 2021), and individuals with one or more co-occurring psychiatric disorders report more unmet service needs compared to adults without comorbid disorders (Schott et al., 2021). Furthermore, employed adults receive more services and have fewer unmet service needs than those who are unemployed (Schott et al., 2021).

Purpose of the study

Past research suggests the current service system has limited capacity to meet the needs of autistic adults, with services described as unhelpful or unavailable (Cheak-Zamora et al., 2015; Gotham et al., 2015). Autistic individuals and their families are frustrated by the lack of service availability and are concerned about continued dependence on caregivers in adulthood (Cheak-Zamora et al., 2015). While past survey data on service use and barriers provide information on service needs and access to resources, this information does not reflect the meaningfulness of the services to the person (Turcotte et al., 2016), or how these services connect to outcomes associated with QOL in adulthood to make the best use of limited resources. In addition, little is known about the association between service use and community participation. As adult outcomes are often dependent on access to services, understanding how to best support autistic adults, their service preferences and needs, and which services they perceive are most helpful is increasingly important (Levy & Perry, 2011; Turcotte et al., 2016).

This study extends the research on adult service use and needs. We sought to understand which services have been most helpful in adulthood from the individual’s perspective as an expert on their own experiences, and to examine the relationship between service use and community participation outcomes.

Methods

Participants

An autism research registry associated with a university in the southeastern United States assisted with participant recruitment. To be eligible for study participation, participants needed a documented diagnosis of autism, an IQ of 70 or above, to be an English speaker (verbally or nonverbally) and between the ages of 24 and 65. Participants (N = 40) were required to attend two 1-h-long interviews, and thus, a high level of language development was needed to participate in our study. Prior research has demonstrated that autistic children with low IQs tend to have language impairments as adults (Howlin et al., 2004). Requiring participants to have an IQ of 70 or above in the present study ensured that participants could meaningfully participate in the study, including the qualitative component. The research registry manages a database of all individuals in the state who have a diagnosis of autism and have expressed interest in participating in autism research. Eligible participants were contacted by the registry via mail or email and could either respond to the registry or the principal investigator (PI). The PI or graduate research assistant then contacted interested participants by telephone to review the study in more detail and ask screening questions to ensure the participant was able to engage in all parts of the study. Participants or their legal guardian consented to participation in writing. Five participants had a legal guardian, and those with a legal guardian verbally assented prior to the beginning of the study. The university’s Institutional Review Board approved all aspects of the study.

Measures

Community participation

This study used a mixed methods approach to assess community participation that included global positioning system GPS tracking, survey data, and interviews. All participants carried a GPS device for 1 week, which supplied information on where they went in the community and how much time they spent in the community. The research team confirmed the data-tracking week represented a typical week for each participant before and after data collection. The participant also completed a daily travel diary of locations visited outside the home, the purpose of the visit, and type of location (i.e. social/leisure, healthcare, shopping, etc.). Each location was then coded by the research team into broader location categories of daily living (e.g. drug stores and grocery stores), vocational (e.g. volunteer or work locations), or social and/or recreational (e.g. movie theaters and friends’ homes). Based on the locations visited during the week, an “activity space” was created for each participant through geographic information system (GIS) mapping software, which geographically represents the distance and direction of space occupied in the community through visiting these locations. The size of this activity space was then calculated in GIS using a 1 standard deviation ellipse method in ArcGIS v.10.5. Community participation outcome measures included GPS data of average time away from home, number of unique locations visited during the study week, number of each different type of locations visited, and activity space size.

Service use and barriers

Prior to the study week, participants or their legal guardian completed a survey that included questions about demographic factors (age, gender, race and ethnicity, employment status, and level of education). Two of the five participants who had a legal guardian completed the survey on their behalf. The survey also asked which services participants had received in the last 2 years from a list of 17 service types, including assistance finding a job or vocational skill development, job coaching, financial aid, educational assistance, daily living skills support, mental health services, social work services, physical therapy, assistive technology services, disability transportation assistance, diagnostic and/or evaluation services, speech or language therapy, audiology services, respite care, housing or residential assistance, personal assistant/in-home aid, and nursing care.

Participants were also asked to indicate which services had been most helpful in the past 2 years, and which services had been most helpful since high school. Participants could freely write in any response to these questions. The survey noted the services listed were examples, but they could include other services not listed, and requested that participants rank which services were most helpful if more than one service was reported. Responses were compiled and grouped into themes aligning with the 17 main service categories if the response was not part of the original list.

Participants could also select barriers to service utilization from a list including cost, unavailability or distance, poor service quality, language difficulties, transportation challenges, ineligibility, or being unsure where to find services. The survey also included questions regarding whether participants required additional services and which services they needed, where participants could again respond in an open text space.

Count data were recorded for the number of services each participant used in the past 2 years, the number of service barriers reported, the number of participants who accessed each service type, the number of times each service was elected as most important, and the number of participants who endorsed each type of barrier. The number of participants who indicated they needed additional services was determined as well as a count of the type of services requested.

Finally, following the 1-week data tracking period, participants engaged in a follow-up semi-structured interview that asked questions regarding the places they visited during the GPS tracking week, and invited participants to add other places that were important to them in the community but that they did not visit that week. As part of this process, participants were asked a series of prompts that included potential community locations they may visit, including if they were currently seeing a counselor, which was coded as a yes/no response.

Autistic adults provided input in assessment selection and interview questions as part of pilot testing from a previous version of this project. Based on feedback from the pilot testing, changes for the current study included selecting survey measures with a yes/no response or well-defined response options rather than using Likert-type scales or asking participants to provide estimates of the frequency of participation or service use.

Analysis

Analyses were performed in IBM SPSS Statistics (IBM Corp, 2022, Version 28) and R (Rstudio Team, 2021) and all inferential statistics were performed at an alpha level of 0.05. Based on the findings of the descriptive analysis regarding the use of mental health and employment services, subsequent analyses focused on these service areas. t-tests were used to compare participants who received mental health services or employment services in the past 2 years to those who did not, and those who were or were not currently seeing a mental health counselor on community participation outcome variables (number of unique locations visited, number of different types of locations visited, average time away from home, and activity space size). t-tests were also performed to examine differences between demographic groups (i.e. gender, race, and employment status) on the number of services used and barriers to services. Levine’s tests of homogeneity were run for each t-test resulting in p > 0.05, indicating the assumption of equal variances was met for each test. One case was removed from analyses involving activity space as an outcome variable because the participant’s activity space was exceptionally large compared to other participants (x = 1793.70 vs M = 123.61) due to work-related travel during the study week.

Chi-square tests were used to determine if those who accessed mental health treatment and employment services differed on employment status, and to examine if an association existed between demographic factors (i.e. race and gender) and employment/mental health service use in the past 2 years. In addition, a chi-square test was used to test the association between accessing mental health services and employment services in the past 2 years. A Yate’s continuity correction was applied to chi-square tests when expected contingencies were less than 5.

Results

Forty adults aged 24–62 years completed the study. Table 1 contains participant demographics.

Table 1.

Participant demographics (N = 40).

Demographics	n	%
Age
M (SD)	37.80 (10.77)
Range	24–62 years
Gender
Male	27	67.5
Under guardianship	5	12.5
Race
White	33	(82.5)
Black/African American	4	(10)
Multiracial	3	(7.5)
Highest educational achievement
High school	3	7.5
Some college	18	45
2-year degree	6	15
4-year degree	7	17.5
Advanced degree	6	15
Living situation
Alone	10	25
With spouse or roommate	8	20
With family	21	52.5
In a group home	1	2.5
Employment status
Employed	22	55
Full-time	8	20
Part-time	14	35
Unemployed	18	45
Never employed	7	17.5
Previously employed, currently unemployed	11	27.5

SD: standard deviation.

Service use and barriers

Participants averaged 2.2 types of services (SD = 2.02, range = 0–9) out of a possible 17 services over the past 2 years. The most frequent services used in the past 2 years were mental health services (n = 23, 57.5%) and employment services (n = 15 or 37.5%, with 11 participants receiving job coaching). Participants also frequently accessed medical services for diagnosis or evaluation related to their disability (n = 12, 30%). Very few participants received instruction or help with daily living skills including managing money or cooking (n = 3, 7.5%), transportation (n = 2, 5%), personal supports (n = 2, 5%), home health (n = 2, 5%), physical therapy (n = 5, 12.5%) or social work services (n = 5, 12.5%). While many participants reported no barriers to obtaining services in the past year (n = 14, 35%), the most frequent service barriers reported were services not being available or too far away (n = 11, 27.5%), not being sure where to find the services needed (n = 10, 25%), and not being eligible for needed service (n = 8, 20%).

There was not a significant relationship between receiving mental health and employment services in the past 2 years, or between any other services, except for receiving employment services and having a job coach, χ²(1, n = 40) = 15.46, p < 0.001 and between receiving mental health services and medical services, χ²(1, n = 40) = 6.31, p = 0.012.

Demographic differences

There were no significant differences in the number of services received in the past 2 years observed by demographic variables, including by gender, race, employment status, education level, or living situation. Similarly, there were no significant differences in the reported barriers to services use by race, gender, employment status, education level, or living status. When examining differences between those who had and had not received employment services in the past 2 years, 100% of the sample receiving employment services in the past 2 years were White (n = 15), although statistically there was not a significant association between race and receiving employment services after applying a Yate’s continuity correction, χ²(1, n = 40) = 3.34, p = 0.068. There was also not a significant association between race and receiving mental health services in the previous 2 years nor between gender and receipt of either service type.

Most helpful services

Autistic adults most frequently (n = 15, 37.5%) identified mental health services, including psychological, counseling, other mental health services, or related services such as medication assistance and evaluation for autism, as the most helpful service received in the past 2 years, followed by employment support services (n = 8, 20%) such as job coaching, help finding a job, and supported employment (Figure 1). When asked which services had been most helpful since high school, psychological or mental health services (n = 15, 37.5%) and employment services (n = 9, 22.5%) were again reported as most helpful (Figure 2). The two participants whose legal guardians completed the survey similarly indicated that employment services, and also Medicaid Waiver services were most helpful in the past 2 years and since high school.

Figure 1.

Most helpful services in the last 2 years.

Figure 2.

Most helpful services since high school.

Service priorities

When asked about which services autistic adults in the sample desired but were not currently receiving, a similar trend was found. For those who responded as needing additional services (n = 18, 45%), six requested mental health services and four noted needing employment supports. Regarding needed services, one participant stated, “A counselor who is trained to work with autistic adults.” Other participants expressed a desire for support groups, psychological counseling workshops, pastoral counseling, and individual counseling. Related to employment supports, responses for service needs included, “[A] job coach if I return to work,” and “Help getting a job or volunteering,” and “[a] job, reading, school.” Other requested services included, “help with social interactions and group activities, having a mentor/’friend’ and/or life coach,” “having a personal assistant,” and “help with finding services covered by insurance.” In addition, participants mentioned communication assistance, help finding an autism doctor, and help with finances. Several participants simply noted “personal assistant” as a need. However, in many cases, the participant reported needs across multiple areas of life. For example, one adult reported needed services as, “Therapy/counseling, support group with others in a similar functional capacity as me, cooking/health/socializing classes or one-on-one instruction, assistance with more advanced activities of daily living (stuff beyond just the basics),” while another noted, “Organizational planning to structure life not at work, some sort of life coach at home.” Similarly, another participant expressed needs of “Career counseling, life management, health advisor, immigration specialist.” These service needs were similar for those who had a guardian, although one guardian noted daily nursing care needs following surgery.

Services use and community participation

To examine connections between service use and community participation outcomes, a Chi-Square Test of Independence was performed to assess the relationship between currently seeing a counselor and participating in full-time or part-time employment. There was a significant relationship between the two variables, χ²(1, n = 34) = 4.86, p = 0.039, where individuals who were currently or previously working full-time were more likely to be currently seeing a counselor than those who were working part-time. Individuals currently seeing a mental health counselor (n = 21) also had a significantly greater number of unique locations visited in the community, and specifically were participating in a significantly greater number of social/recreational locations. Figure 3 shows an example mapping the difference in number of unique locations and activity space size between a participant who was currently seeing a mental health counselor and working 40 h per week (Adult 1) and one who was not seeing a counselor and working 30–39 h per week (Adult 2). There were no significant differences between those currently seeing a mental health counselor and those who were not seeing a counselor on other community participation measures of average time away from home, activity space size, or number of vocational or daily living locations.

Figure 3.

Map of number of unique locations and activity space sizes of adult 1, who was currently seeing a mental health counselor and working 40 h per week, and adult 2 who was not seeing a counselor and working 30–39 h per week.

Those who had received mental health services in the past 2 years visited significantly more daily living locations during the study week than those who had not received mental health services, while those who received employment services in the past 2 years visited significantly less daily living locations than those who did not receive employment services. Summary statistics of significant analyses are provided in Table 2. There were no significant differences between those who accessed mental health services or employment services in the past 2 years and those who did not on any other community participation measures. Non-significant results from all analyses are available upon request.

Table 2.

Service use and community participation t-test results.

IV	DV	M	SD	t(38)	p	95% CI	d	CId
Currently seeing a counselor vs not	Number of unique locations	16.05 vs 11.16	5.63 vs 6.83	−2.48	0.018	−8.88, −0.90	−0.79	−1.45, −0.12
Currently seeing a counselor vs not	Number of social/ recreational locations	6.29 vs 2.79	3.15 vs 2.51	−3.86	<0.001	−5.33, −1.66	−1.22	−1.92, −0.52
Received mental health services in the past 2 years vs not	Daily living locations	8.22 vs 5.65	4.24 vs 3.46	−2.04	0.048	−5.12, −0.02	−0.65	−1.32, 0.01
Received employment services vs not	Daily living locations	5.13 vs 8.32	3.56 vs 3.98	2.55	0.015	0.66, 5.72	0.83,	0.14, 1.52

IV: independent variable; DV: dependent variable; SD: standard deviation; CI: confidence interval.

Discussion

With an estimated 5.4 million autistic adults in the United States who may need services, but have diminishing supports in adulthood, more attention is needed to improve service access, quality, and outcomes at the community level (Buescher et al., 2014; Dietz et al., 2020; Shattuck & Roux, 2014). To the literature on service use and barriers, the current study adds autistic adults’ perspectives regarding which services are most helpful in adulthood, and which services may contribute to adult community participation outcomes with notable trends. While overall receipt of services in adulthood was low across the sample, receiving mental health services in adulthood, particularly currently seeing a mental health counselor, emerged as an important factor related to participating in more social/recreational activities and full-time employment, as well as visiting significantly more unique locations in the community during the study week. Receipt of mental health services was also most frequently identified as the service that has been most helpful for individuals in the past 2 years, and the service identified as needed most for those who were not currently receiving it. The low number of services received in the past 2 years (i.e. an average of 2 out of 17 services) may reflect the overall lack of available services for autistic adults, which was reported as the primary barrier from the sample. It is also possible, however, that our participants did not qualify for certain services because our inclusion criteria required participants to have an IQ above 70, a characteristic that may have rendered them ineligible for many services.

Obtaining information from the autistic adult’s perspective on which services are perceived as most meaningful in adulthood extends past research describing most adult services as unhelpful and unavailable (Cheak-Zamora et al., 2015; Gotham et al., 2015). Notably, receiving mental health services was reported as more helpful by a greater number of autistic adults in the sample than employment services, both since high school and in adulthood overall. While employment services were also noted as helpful to the autistic adults, the current service system prioritizes employment services, with less consideration of mental health services as essential to prepare autistic youth for success in adulthood. Although this study purposefully included adults past transition age (24 years and older) to focus on adult outcomes and perspectives, we recognize that the success of these outcomes often begins in the transition period. Referral to VR begins at 14–16 years old as part of transition planning in the US school system, and employment is one of the required areas that must be addressed on individualized education plans before high school exit (Individuals with Disabilities Education Act, 20 U.S.C. § 1400, 2004). However, similar emphasis is not given to referral for mental health services in the transition to adulthood, despite growing research on the high rates of comorbid psychiatric disorders and suicidal thoughts and behaviors in autistic adolescents and adults (Cassidy et al., 2014; Maddox et al., 2021; Rosen et al., 2018). School personnel may wish to screen for mental health conditions beginning in early adolescence with broadband behavioral health rating scales such as the Behavior Assessment System for Children, 3^rd Edition (Reynolds & Kamphaus, 2015), which could identify adolescents at risk for mental health conditions and allow for connection to school or community based mental health services early on, if warranted, with a plan for continuing mental health services in adulthood.

The current findings suggest the need for both mental health and employment services for the best chance of success in adulthood. Autistic adults may need mental health services in addition to employment support, following an integrated treatment model like the IPS approach that has demonstrated some success with young autistic adults (McLaren et al., 2017). In addition, our findings provide preliminary support for why mental health services may be so important. Specifically, currently seeing a mental health counselor was associated with full-time work and more community participation, especially participation in social/recreational activities, which are often of high importance to autistic adults (Shea et al., 2021).

In addition to the mental health and employment services used, medical services for diagnosis or evaluation of autism was the third most frequently used service type, which may provide continued support for the growing data on late diagnosis of autistic adults (Lai & Baron-Cohen, 2015; Leedham et al., 2020). Conversely, very few participants received services related to daily living skills including managing money or cooking, transportation, or personal supports. These results may be due to our sample representing individuals with an IQ above 70 and able to participate in a 1-h interview, reflecting a functional level of individuals who may be less likely to qualify for ongoing services in adulthood compared to those with co-occurring intellectual disability (Hewitt et al., 2012 ). However, these same services could still be important for this group, as several participants noted similar themes in the free response section for needing help with organization, planning, daily living and personal support services. Borrowing from an evidence-based practice in mental health service provision, the Assertive Community Treatment (ACT) team model (Stein & Santos, 1998), creates an interdisciplinary team-based approach with time-unlimited support that similarly could provide regular, community-based connection points with multiple areas of expertise and customized support for the needs of autistic adults to live, work, and participate in the community as independently as desired. While it would have a somewhat different focus and core team than traditional ACT teams, the traditional expertise in psychiatry, nursing, mental health, employment/education, housing and peer support could be supplemented with expertise in life skills, goal setting/self-management, community safety, transportation, social coaching, and/or financial or legal support for a holistic, community-based approach to improve housing and employment stability as part of community living and participation. Future research may benefit from exploring a modified ACT approach to address service needs and barriers for autistic adults.

The current findings align with past research as autistic adults report the greatest needs in mental health and employment services, and service barriers related to availability in the geographic area, lack of knowledge of services, and eligibility. Schott and colleagues (2021) surveyed 227 caregivers and autistic adults and found that over 50% of caregivers reported an unmet mental health care need for their adult children and over 60% reported an unmet employment service need. In addition, approximately 35% and 45% of autistic adults self-reported unmet mental health and employment service needs, respectively (Schott et al., 2021).

It is of note, however, that there was minimal association between receipt of different services, including mental health and employment services. In the current study, it was not the case that if participants were receiving one of these services, they were receiving both, or many service types. This suggests that participants were not necessarily “service connected,” and reinforces the call for providers to be “service brokers” to connect families to other services (Cascio & Racine, 2022). However, it is also possible that those individuals had previously received some of these services noted in adulthood beyond the data requested from the last 2 years. Similarly, although work status was not associated with employment services, it is possible that participants who were currently employed had received employment services prior to the past 2 years. It may be that their current job or job seeking skills were already established because of the focus on employment supports in the transition period. Examining the current study’s data more closely, nine participants (22.5%) were currently employed and reported receiving employment services and/or job coaching in past 2 years, while 12 (30%) were currently employed but had not received employment services in past 2 years. It is unknown whether these individuals secured employment on their own, or were previously involved with employment services, which is a limitation in the data. In contrast, seven participants had received employment services or job coaching within the past 2 years but were currently unemployed. This finding is in line with the previously established competitive employment rates following VR services of approximately 40%–50% (Alverson & Yamamoto, 2017 ; Chen et al., 2015). Autistic adults may be referred to and even access VR services, but not everyone will achieve an employment outcome.

Implications for research and practice

The importance of mental health services reported by autistic adults in the current study underscores the significant need for more mental health counselors trained in working with autistic individuals. Maddox and colleagues (2021) identified the limited capacity of the community workforce to serve autistic individuals across the lifespan and the significant shortage of counselors specifically trained to work with autistic adults as one of the current gaps in mental health service provision. This need was poignantly noted by one of the participants in the current study, who identified finding a counselor specialized in working with autistic adults as their primary service need. As this need becomes clearer and as more research shows the benefits of mental health treatment for autistic adults (Hesselmark et al., 2014; Kuroda et al., 2022), graduate psychology and counseling training programs would benefit from including training on how to tailor evidence-based practices for individuals with developmental disabilities. In addition, freely available online training in mental health and developmental disabilities is available to practicing clinicians (Mental Health and Developmental Disabilities, 2022). Autistic adults may also benefit from connections to mental health clinicians through VR counselors as our findings suggest that this may improve employment outcomes.

While not statistically significant, in this sample all participants who received employment services in the past 2 years were White. Similarly, previous findings related to VR service outcomes for autistic individuals note racial discrepancies. For example, White individuals are more likely to be competitively employed following VR services compared to those of racial/ethnic minority groups (Alverson & Yamamoto, 2017 ; Schaller & Yang, 2005). Although our findings represent a small sample (n = 7 non-White) from a specific geographic area (southeastern United States), the current findings suggest an important gap in service provision and accessibility to employment services, and warrants closer analysis.

Limitations

Notable limitations to the current findings include a small sample from a limited geographic area that does not include individuals with an IQ less than 70, and therefore does not represent the full spectrum of the population. Individuals with lower cognitive abilities may have different service use patterns, priorities, and needs in adulthood than those reported in the current study. We used semi-structured interviews in our study and employed IQ as a proxy for the ability to complete these interviews. Rather than assessing each participant for their language abilities and preferences, IQ was used as an estimate of language ability to minimize time, resources, and burden on participants. However, IQ and language are not perfectly correlated, and future qualitative studies would benefit from the inclusion of individuals across the cognitive spectrum with accommodations for communication preferences and interview length tolerance.

In addition, as the study was not designed as a comprehensive assessment of service use, follow-up on why specific services, such as mental health services, were reported as “most helpful” in adulthood is missing to further inform the data and implications. For example, one participant noted in the interview that their therapist was their biggest form of social support. Other participants noted social connections gained through their weekly adult support group at the local autism program. Similarly, although participants were able to freely respond to what services they felt they needed in adulthood, it is unclear what participants envisioned in the services reported. For example, how a “life coach” or “life manager” would help and how this service might differ from other types of therapy is unclear. In addition, the survey question regarding full-time employment asked participants to specify how many hours they worked in their current or most recent job. Therefore, results of the analysis regarding currently seeing a mental health counselor and full-time employment included individuals who were capable of full-time employment but may not have been currently working. Future research with a larger, more representative sample can include specific questions regarding the value of receiving mental health services, or being connected to a mental health counselor, from the autistic adult’s perspective. Finally, as mentioned previously, because service use was only asked regarding the past 2 years, it is possible that some of the services were previously received and no longer needed, such as prior employment services for those who were currently employed. Therefore, the notion of service connectedness is not represented in the current data, which is a limitation of the study.

Conclusion

The demand for adult services by a growing autistic adult population is projected to overwhelm the current adult service delivery system. The current study captured autistic adults’ perspectives on which services are most helpful in adulthood, which services are still needed, and how services used may be associated with community participation. Although findings note overall low service use in adulthood, autistic adults were most frequently receiving mental health and employment services, the two services they reported have been most helpful in adulthood and that are an ongoing need. Furthermore, current engagement with a mental health counselor was connected to full time employment and participation in a wider range of community locations, particularly social/recreation-based locations. Future research and a service delivery model reflecting the enduring need for integrated mental health and employment services and supports may be warranted to increase community participation in adulthood.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was made possible through funding from The National Institute on Disability, Independent Living, and Rehabilitation Research (#90SFGE0008-01-00). Recruitment assistance for the project was conducted through the Autism Research Registry, provided by the UNC Intellectual and Developmental Disabilities Research Center (NICHD; P50 HD103573; PI: Joseph Piven). The REDCap data management aspect of the project described was supported by the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health, through Grant Award Number UL1TR002489. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. This paper was presented at the Conference on Rehabilitation Education (NCRE/CSAV/RSA) Annual Meeting, 16 September 2022.

ORCID iDs

Dara V Chan

Julie D Doran

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