Person-Centered Interventions for Autistic Adults Ages 18+ (2013–2021)

Abstract

Systematic review briefs provide a summary of the findings from systematic reviews developed in conjunction with the Evidence-Based Practice Program of the American Occupational Therapy Association. Each systematic review brief summarizes the evidence for a theme related to a systematic review topic. This systematic review brief presents findings from a systematic review of family- and person-centered planning interventions for autistic 1 adults aged 18+ years gathered from literature published between 2013 and 2021.

Full Systematic Review Question

This systematic review addressed the question “What are the effects of person-centered, student-centered, or family-centered planning approaches on outcomes within the scope of occupational therapy for autistic persons and families of autistic individuals?”

Current Theme Reported

The main themes of the studies presented in this systematic review brief include person-centered planning (PCP) interventions for autistic adults aged 18+ years.

Clinical Scenario

Collaborative partnerships between occupational therapy practitioners (OTPs) and clients drive the practice of occupational therapy (American Occupational Therapy Association, 2020). These partnerships depend upon client-centered care which “incorporates respect for and partnership with clients as active participants in the therapy process” and “emphasizes clients’ knowledge and experience, strengths, capacity for choice, and overall autonomy” (Schell & Gillen, 2019, p. 1194). Likewise, PCP offers a “facilitated, individual-directed, positive approach to the planning and coordination of a person’s services and supports based on individual aspirations, needs, preferences, and values” (National Quality Forum, 2020, p. 7).

PCP fosters development of self-determination through meaningful exploration and discovery of unique preferences, needs, and wants (Kim, 2019). Further, PCP can support engagement in areas for which autistic individuals face widespread challenges, such as “health and well-being, relationships, safety, communication, residence, technology, community, resources, and assistance” (National Quality Forum, 2020, p. 7). Autistic adults need tailored supports and services through PCP and other approaches to help drive their participation and full inclusion in pursuits throughout the life course. When equipped with the right supports to thrive, they can pursue engagement in community life that reflects their long-range goals, interests, values, hopes, and dreams. This pursuit can help drive efforts to enhance their quality of life and health and wellness (Carter et al., 2013; Bernhardt et al., 2020).

Summary of Key Findings

This review included both quantitative evidence (Levels 1b–3b) and qualitative studies which described person-centered planning interventions for autistic individuals and their families. Out of the 23 articles included in the full systematic review, 10 articles (Table 1) (43%) focused on person-centered planning interventions for autistic adults aged 18+ years, which are described in this brief.

After analyzing these 10 articles (Level 2B, n = 2; Level 3B, n = 6; single-subject design Level 2, n = 2), three subthemes emerged:

Emerging evidence with a moderate strength of evidence (n = 5 articles) that supports mentoring interventions with PCP components for achieving a wide set of outcomes.

Emerging evidence with a moderate strength of evidence for use of multicomponent module interventions with PCP components for social and self-determination outcomes (n = 3 articles) for transition-age autistic adults.

Unestablished evidence with low strength of evidence to support the use of PCP approaches in the context of employment or a virtual computer training program (n = 2 articles).

Table 1.

Evidence Table for Person-Centered Interventions for Autistic Adults Aged 18+

Author YearLevel of EvidenceRisk of Bias (RoB)CountrySetting	Intervention	Statistically Significant Improvement Resulting From Interventions
Subtheme 1: Mentoring Interventions Including PCP Components Five studies (all Level 3b) evaluated mentoring programs with person-centered planning components. Four studies implemented mentoring with nonautistic peers in university settings for young autistic adults, and one implemented mentoring with autistic adults for other middle-aged autistic adults. These studies support mentoring with person-centered planning components as an emerging evidence-based practice at a moderate strength of evidence for autistic adults.
Hotez et al. (2018) Level 3b Participatory action research, Mixed-methods with one-group pretest, posttest design RoB Moderate Country United States Setting Postsecondary university	Population N = 10 transitioning to college or in college with an identified IEP disability and self or parent-reported autism diagnosis (phase 2). Mean age: 18.8 yr, 80% male. Intervention Summer Transition Program-2 including a structured curriculum adapted each term in response to participant input, group games, role play, and one-on-one meetings with autistic and nonautistic mentors. Curriculum content has included self-advocacy skills, self-efficacy, autism knowledge, disability identity, social skills, executive functioning skills, self-regulation skills, interview and employment skills, and writing skills. Control None. Delivery Method Classroom-based group instruction and undergraduate student mentor delivering individualized support. Dose 5 hr/day for 5 days (25 hr total).	Between Groups N/A Within Group (Prepost Change) Increased self-reported knowledge about autism, decreased symptom report, increased identification of how disability can be a strength, increased identification for why and when disclosure of disability is important in college.
Martin et al. (2017) Level 3b Mixed methods with one-group pretest, posttest design RoB Moderate Country United Kingdom Setting Community based	Population N = 12 self-referred individuals aged 18+ who committed to mentoring process. No mean age or gender reported. Intervention Community-based mentoring program focused on achieving self-identified goals for the autistic mentee paired with an autistic mentor matched for interests. Autistic mentors received training in mentoring and passed criminal background check prior to mentoring. Control None. Delivery Method Face-to-face meetings of mentor and mentee in a public location chosen by both. Dose 1 hr/week for 6 mo (∼24 hr total).	Between Groups N/A Within Group (Prepost Change) 40% experienced an increase in self-selected goals at posttest. Qualitative Mentees perceived that matching of mentors was highly important for success, mentoring enabled progress toward goals, and mentees felt empowered
Siew et al. (2017) Level 3b One-group pretest posttest RoB Moderate Country Australia Setting Postsecondary university	Population N = 10 undergraduate autistic students self-reporting autism diagnosis (mean age = 18.0 yr, 70% male) Intervention Curtin Specialist Mentoring Program (Siew et al., 2017) with one-on-one peer mentoring from a nonautistic postgraduate mentor. Mentors received training using a manualized approach and researchers matched them according to interests. Control None. Delivery Method One-on-one mentoring with optional group meetings. Dose Mentor-mentee pairs met 1 hr/week for one semester. Optional social group sessions were offered weekly.	Between Group N/A Within Group (Prepost Change) Statistically increased scores on the perception in which the autistic participants perceived social support. Statistically reduced apprehension in communicating with others. Qualitative Mentoring was positive when it included the following: constant and stable sources of support, peer supports, and flexible and individualized support focused on mentee goals
Thompson et al. (2020) Level 3b One-group pretest posttest RoB Moderate Country Australia Setting Postsecondary university	Population N = 30 (n = 18 completed) undergraduate autistic students self-reporting autism diagnosis (mean age = 22.3 yr, 73% male) Intervention Curtin Specialist Mentoring Program (Siew et al., 2017) with 1-to-1 peer mentoring from a nonautistic postgraduate mentor. Mentors received training using a manualized approach, and researchers matched them according to interests, and provided weekly supervision for mentors. Control None. Delivery Method 1-on-1 mentoring with optional group meetings. Dose Depended on the university where this was conducted. One university required mentor–mentee pairs to meet for 1 hr/week for one semester; the other university required mentor–mentee dyads to meet 1–2 hr twice a week for a semester. Optional social group sessions ran weekly.	Between Group N/A Within Group (Prepost) Significant decrease in total autistic traits, including communication and motivation symptoms Qualitative “Active ingredients” were developing partnerships and understanding; modeling and practicing communication; psychological supports; and grading and planning skills
Todd et al. (2019) Level 3b Mixed methods one group prepost pilot study RoB Moderate Country United States Setting Postsecondary university	Population N = 16 self-identified autistic college students who were able to participate in moderate to vigorous physical activity (mean age = 22.3 yr, 81.3% male) Intervention IFiT curriculum to provide mentored support for physical fitness; nonautistic peer mentors received training. Paired dyads exercised together and focused on preferred exercise activities identified by autistic participants and implemented at the time and location of participant preferences. Control None. Delivery Method Paired dyads. Dose Sessions of at least 30 min of moderate-to-vigorous physical activity with aerobic and strength training. Dose was 2.5 hr a week for 10 wk (25 hr total).	Between Group N/A Within Group: Fitness Levels 30% had a significant improvement in cardio- respiratory fitness; 25% had a significant improvement in upper body muscular endurance. Adherence 89.1% adherence rate for the IFiT program (18/20 sessions on avg). Qualitative 3 themes: gains in motor competence and knowledge of exercise, improved health (sleep, energy, strength, gastrointestinal health), and a sense of belonging.
Subtheme 2: Multicomponent Structured Module Interventions With Person-Centered Planning Elements Three studies (two Level 2B, one single-subject multiple-baseline design with Level 2 evidence) provided emerging evidence with a moderate strength of evidence for use of multicomponent structured module interventions with PCP components. These studies found positive social and self-determination outcomes for transition-age autistic adults with these approaches.
Nadig et al. (2018) Level 2b Randomized controlled trial RoB Moderate Country Canada Setting Community-based	Population N = 26 autistic adults aged 18–32 yr with diagnosis of autism spectrum disorder, absence of intellectual disability, and the ability to communicate in English (mean age = 21.99, 68% male). Intervention McGill transition support program with 5 modules in 3 domains (social communication, self-determination, working with others)—facilitated by graduate students. Control Waitlist. Delivery Method Groups of 4–6 participants Dose 2-hr sessions weekly, for 10 wk (20 hr total).	Between Group Significantly improved interpersonal cognitive problem-solving vs. control group. Within Group Perceived skill attainment on researcher developed scale, as rated by autistic adults and their parents at the posttest compared with the pretest.
Oswald et al. (2018) Level 2b Pilot randomized controlled trial RoB High Country United States Setting Clinic	Population N = 44 autistic adults with a DSM–5 diagnosis and verbal IQ ≥ 70 (mean age = 25.1 yr, 68.3% male). Intervention ACCESS Program (Acquiring Career, Coping, Executive Control, Social Skills) curriculum with social coaches (parent or close relative). Control Waitlist control. Delivery Method In-person curriculum in clinical setting. Dose 1.5 hr/week for 19 wk (∼28.5 hr total).	Between Group Participants reported significant improvement in coping skills compared with the control group. Social coach reported significant improvement in adaptive behaviors. Social coach reported significant improvement in self-determination skills.
Ashbaugh et al. (2017) Level 2 Single-subject multiple baseline RoB MSR Country United States Setting Postsecondary university	Population N = 3 autistic adults aged 18–25 yr with DSM–5 or DSM–IV diagnosis, enrolled in college, able to speak in full-sentences, and measurable social difficulties (mean age = 21.47y, 33% male). Intervention Structured social planning with 5 components: motivational interests, social activity choice, organizational skill training, peer mentoring, and social skills training. Control Within-subject control using second baseline period. Delivery Method Clinician- and doctoral-student delivered one-on-one sessions with peer mentoring by nonautistic college students. Dose 1 hr session/week for 10 wk (10 hr total)	Participant Findings via Visual Analysis All participants increased the number of informal social activities, extracurricular events attended, and number of peer interactions from baseline to intervention phase. Ratings of satisfaction from pre- to postintervention increased. GPA ratings from pre- to postintervention increased.
Subtheme 3: Person-Centered Planning Interventions in the Context of Employment or a Virtual Computer Program Two studies (one single-subject multiple baseline Level 2 and one 3B) describe the use of person-centered planning approaches embedded into employment settings and in a virtual computer program to foster mental health. These studies represent unestablished evidence at a low strength of evidence when applied to autistic adults because of the lack of other similar studies and the high risk of bias within each study.
Nittrouer et al. (2016) Level 2 Single-subject multiple baseline RoB MSR Country United States Setting Employment setting of the participants (varied)	Population N = 3 adults receiving person-centered planning for customized employment goals of whom n = 2 were autistic and described below (mean age = 24 yr, 100% male) Intervention Functional assessment of workplace skills, collaborative goal setting interviews for improved workplace performance, and implementation of self-management interventions focused on goals. Control Each participant experienced multiple baseline periods without intervention, thus serving as their own control. Delivery Method One-on-one support for development of goals and individualized self-management plan for employment goals. Dose Varied.	Between Groups N/A Within Group N/A Participant Findings via Visual Analysis Baseline to Goal Setting Phase Impact on On-task Behavior: 0% change (participant “C”) 1% change (Participant “A”) Baseline to Self-Management Phase Impact on On-task Behavior: Small, 6% change (Participant “C”) Moderate, 42% change (Participant “A”) Baseline to Self-Management Phase Impact on Job Task Completion: Moderate, 57% avg increase across 4 job tasks (Participant “C”) Moderate, 32%–55% avg increase across 4 job tasks (Participant “A”) Baseline to Maintenance Phase Impact on Job Task Completion: Not employed (Participant “C”) Large,100% change across 4 job tasks (Participant “A”)
Tang et al. (2021) Level 3b Pilot open pragmatic RCT RoB Low Country Australia Setting Virtual	Population N = 25 (n = 20 completed) autistic adults greater than 18 yr living in western Australia with a clinical DSM diagnosis of autism, stable medication regimen, no participation in social skills interventions in the past 3 mo, English and computer skills for participation, IQ > 69, no secondary neurological disorder (e.g., stroke, epilepsy) (64% male). Intervention MindChip™ Plus MindReading© computer program (mean age = 22.64 yr). MindChip ™ includes five manualized learning modules about emotion recognition clues and a facilitated action planning process to set goals and practice applying learning. Modules include “Eye Guesses,” “Face clues,” “Body clues,” “Voice clues,” “Context clues.” MindReading© consists of a toolbox with three sessions focused on personally relevant strategies for managing social situations (“Visual strategies,” “Verbal strategies,” and “Social and Self-care strategies”) and a self-reflection process. Control MindReading© computer program only (mean age = 25.11 yr) used without a facilitator. Delivery Method Virtual modules completed on the computer; intervention group received weekly virtual synchronous session with a psychologist facilitator, virtual modules, and a workbook; Control group received virtual modules and a workbook. Dose 1 hr/week for 10 wk (total 10 hr).	Between Groups Intervention group had statistically greater scores on a measure of emotion recognition and distal generalization of social skills compared with the control group. Within Group Not reported

Note. DSM = Diagnostic and Statistical Manual of Mental Disorders; IEP = individualized education plan; GPA = Grade Point Average; IFiT = Into Fitness Together; IQ = Intelligence quotient; MSR = Meets Standards with Reservations; PCP = person-centered planning; RCT = randomized controlled trial.

In this systematic review brief, the evaluation of certainty of available evidence is based on two sources. The National Professional Development Center on Autism Spectrum Disorder ([NPDC], n.d.; Young et al., 2010), which is accepted in the field of autism research, classify evidence-based practices into three categories: “evidence-based,” “emerging evidence,” and “unestablished.”

Interventions deemed to be “evidence-based” contained either:

two or more high-quality randomized controlled trials in support of that intervention, or

five high-quality single-subject designs conducted by at least three different research groups and which enrolled at least 20 research participants across all single-subject designs.

“Emerging evidence” reflected two or more studies which existed that a) were of lower quality or had less-rigorous study design, and b) had evidence that showed some or no effect and did not produce negative effects on participants (e.g., poor outcomes).

“Unestablished interventions” reflected evidence from available studies that met at least one of these conditions: a) showed negative effects on outcomes of the participants, b) showed no effect for all the available studies on that intervention, or c) presented only one intervention study that that was available for review.

We also provided levels of evidence based on the Oxford Centre for Evidence-Based Medicine (2009) levels of evidence for this review. The strength-of-evidence designations are based on the guidelines of the U.S. Preventive Services Task Force (2018). Study design and strength of evidence for causal relations were evaluated for studies that employed single case experimental design methodology using criteria developed for the What Works Clearinghouse (Kratochwill et al., 2010).

Bottom Line for Occupational Therapy Practice

Based on the evidence reviewed, this brief recommends that OTPs working with autistic adults adopt practices of structured mentoring programs that use PCP from existing literature to support a wide set of outcomes. Some of these articles focus on mentoring programs implemented primarily at colleges and universities. One article supports the use of mentoring in community settings to foster person-centered goals, interests, and strengths. On average, mentoring programs have a dosage totaling approximately 25 hr. This dosage included one program implemented over a 1-wk period, three programs implemented over a college semester, and one program implemented over a 6-mo period.

These studies show that OTPs who aim to support interpersonal skills and self-determination among their autistic clients should partner with other healthcare professionals, including those from mental health. They should work together to implement PCP-focused multicomponent, module-based interventions for autistic adults who strive to attain improved self-determination and social outcomes for their life course. Optimally, these person-centered approaches should infuse specific intervention components to help achieve the best outcomes. These components include cognitive-behavioral therapy, group-based instruction, and structured participation in social settings with peer supports that are manualized. OTPs who are not familiar with these approaches should seek out training to develop their capacity for implementing these approaches with fidelity prior to utilizing them with their clients.