Nationwide, 1 in 44 people is identified as autistic in Minnesota, where more evaluation services are available, the rate is 1 in 36. Autism Spectrum Disorder, or ASD, is a pervasive, neurological, and developmental disability that can include impairment in reciprocal social communication and social interaction, sensory intensity, and restricted, repetitive patterns of behavior, interests or activities.
From an early age, autistic individuals are expected and trained to suppress some core features of their identities or adjust certain behaviors to fit into the dominant neurotypical framework at school, at work, and at home. Many autistic individuals feel like outsiders who are “less than” their peers, worry a great deal about making social “mistakes,” and expend a lot of stressful energy trying to fit in—to be what they’re not. This masking—the result of well-intentioned services employed to help autistic individuals function in a neurotypical world—can damage autistics’ concept of self and take a significant toll on their mental health.
Like everyone else, autistic youth need to see and know role models who are similar to themselves, who can understand how they think, and show them paths to successful, healthy futures. This reality was never more apparent than when an 8-year-old boy told his mother, “Nobody understands me, not even you, because your brain works different than mine.” His mother, Emily Goldberg, realized that though her autistic twin sons were supported by a network of family, friends, teachers, and therapists, they didn’t have autistic adults in their lives who could serve as positive adult role models. Negative stereotyping of autistic people increases the temptation to develop programs designed to “fix” or “treat” autistic children.
The Autism Mentorship Program (AMP), a groundbreaking program that Emily went on to develop, fills a critical void by empowering its key stakeholders—autistic individuals, their families, and allies—to build and participate in a program designed to improve the lives of those in their own community. Rather than focusing on “fixing” autism, AMP builds on the inherent strengths of autistic individuals to provide support for the present and hope for the future.
Some reports indicate that two-thirds of autistic young adults fail to secure a job or enroll in further education during the first two years after high school, 25% are socially isolated, and only 20% will live independently by their early 20s. Yet, there is theoretical and anecdotal indication that many autistic teens make a successful transition to adulthood when they feel a sense of purpose, mattering, and belonging.
AMP supports the transition from adolescence to adulthood by pairing autistic high school students with autistic adults in 1-to-1 mentoring relationships where they talk, share, play games, and build connections. AMP is a place for autistic teens and adults to “just be.” It’s a place where disguises can be removed and true selves can be revealed. Autistic mentors provide understanding and insights to autistic youth that others can’t, help build their sense of self, instill pride in their autistic and other identities, and assist in navigating the challenges of an often confusing or harmful world.
AMP was first initiated in the Spring of 2019 in an abbreviated, 12-week program. The program was well-received and showed great promise for autistic individuals. As a result, in 2019-2020, the program was piloted in its full form (22 mentoring sessions during the school year). Mentor-mentee matches met after school for one hour per week at Kennedy High School in Bloomington, MN. At the start of the COVID-19 global health pandemic, the program shifted online, and mentor-mentee matches continued their sessions via Zoom. It quickly became apparent that AMP was a lifeline for autistic teens. Very rarely did youth miss a session. AMP was a constant and reliable presence during the chaos of Spring 2020.
In 2020-2021, CURA funded our project to pilot test the virtual delivery of AMP. Participants were 6 mentees (aged 15-17) and 7 mentors (aged 20-35). One mentee did not participate in the evaluation. All participants had a diagnosis of ASD and most reported additional diagnoses, including anxiety, ADHD, depression, and PTSD. Surveys were administered at pre- and post-test to assess program satisfaction, mentoring relationship quality, and change from pre- to post-test on targeted outcomes.
Youth mentees reported high program satisfaction and high-quality mentoring relationships. See Table 1.
Table 1: Youth-reported program satisfaction and mentoring relationship quality at post-test
|Construct||Possible Range||Mean (SD)|
|Satisfaction with Participation in AMP||1-5||4.67 (0.52)|
|Satisfaction with Support Received in AMP||1-5||4.67 (0.52)|
|Satisfaction with Mentoring Relationship||1-5||4.83 (0.41)|
|Quality of Mentoring Relationship||1-5||4.35 (0.36)|
Preliminary results of the pilot evaluation also indicated that mentees’ social and emotional well-being improved; and notably, loneliness, depression, and anxiety scores decreased. See Table 2 for pre- and post-test mean scores and the estimated effect size (i.e., Hedge’s g).
Table 2: Mentee-related change from pre- to post-test
|Pride in Autistic Identity||3.00 (1.58)||3.40 (0.89)||0.20|
|Satisfaction with Self||2.80 (0.84)||3.20 (1.48)||0.29|
|Satisfaction with Relationships||3.25 (1.50)||4.00 (1.41)||0.44|
|Depression||21.00 (10.93)||17.80 (11.69)||-0.25|
|Anxiety||30.80 (20.00)||25.40 (19.14)||-0.25|
|Loneliness||2.53 (0.51)||1.89 (1.65)||-0.73|
|Future Orientation||6.68 (0.91)||6.52(1.65)||-0.10|
|Behavioral School Engagement||3.52 (0.46)||3.56 (0.41)||0.08|
|Emotional School Engagement||3.16 (0.46)||3.28 (0.30)||0.24|
Because mentoring relationships are reciprocal in nature, data were also collected on the mentors’ experiences of the program. All mentors (100%) indicated that they (a) were satisfied with their participation in AMP, (b) were satisfied with the level of support they received in AMP, (c) enjoyed their participation in AMP, and (d) were satisfied with their mentoring relationship.
On a measure of relationship quality with their mentees,6 mentors averaged a 4.1 out of 5. Mentors reported that guiding their mentees, playing games, positively bonding with their mentees, interacting with other mentor-mentee pairs, and having a positive impact in their mentee’s lives were most important to them. Mentors were asked about the most challenging aspects of mentoring and noted dealing with personal struggles, maintaining conversation, technological issues, and conducting sessions when mentees are less interactive.
Finally, mentors were asked to reflect on how being a mentor has helped them, if at all. Mentors reported increased confidence, strengthened leadership skills, learning how to support others, and learning how to be vulnerable. Mentors showed positive pre- to post-test change in empathy and flourishing. See Table 3 for pre- and post-test mean scores and the estimated effect size (i.e., Hedge’s g).
Table 3: Mentor-related change from pre- to post-test
|Construct||Pre-Test Mean (SD)||Post-test Mean (SD)||Hedge’s g|
|Empathy||8.05 (.65)||8.59 (1.54)||0.53|
|Self-esteem||15.86 (4.30)||15.86 (4.45)||0.00|
|Flourishing||8.95 (1.21)||9.16 (.98)||0.41|
Our work has shown the promise of AMP as a program that provides a positive experience for both autistic adolescents and adults. AMP participants report enjoying the program, having positive relationships with one another, and experiencing improvements regarding their mental health and self-concept. Participants and their families find AMP to be meaningful and continue to find the program valuable for their community.
While participants find the program to be helpful, participants do report some areas of challenge. For example, as noted, mentors reported that it can be difficult to lead conversations and engage mentees at times. This type of feedback provides our university-community team with some valuable input as to how we can best support mentors throughout their participation. AMP is also making targeted efforts to increase diversity and inclusion within programming, which will support further access to the program for communities who have not yet been able to participate. Increased diversity and inclusion will also provide opportunities for increased representation within mentor-mentee matches that can enhance the understanding and relationship-building found in mentoring relationships.
AMP is preparing to run a randomized controlled trial (RCT) of the online mentoring program during the 2022-2023 school year. We will evaluate social and mental health outcomes for 20 mentor-mentee matches, as well as outcomes for 20 autistic adolescents who do not participate in AMP but continue participating in special education programming as usual. Following the completion of this study, we hope to continue expansion of the program to allow mentoring for more autistic individuals across Minnesota.
Dr. Lindsey Weiler is an Associate Professor in the Department of Family Social Science at the University of Minnesota. Dr. Weiler studies the process and impact of youth mentoring programs. She is a family therapist and prevention scientist who applies this expertise to the use of relational interventions for positive youth and family development. She is co-founder of the Campus Connections mentoring program for youth. Dr. Weiler currently serves on the Research Board of the National Mentoring Resource Center and her research has been featured in various local and national outlets.
Emily Goldberg is the founder of the Autism Mentorship Program. She parents 8th grade autistic twin boys whose insights sparked the idea for the program. A documentary filmmaker, video and podcast producer by profession, she brings decades of communication, avid research, and deep listening skills to the program’s development. Emily oversees the program, engaging in strategic planning, establishing partnerships, and working to secure financial support.
AJ Hokland has been involved in AMP since its early development, and currently serves as a Program Consultant. They help develop program curriculum, review and edit written materials, mentor the autistic adult mentors, and contribute ideas to AMP team dialogue. A member of a multi-generational autistic family, AJ is an autistic individual with three autistic adult offspring. With an associate’s degree in Early Childhood Education and a BA in Developmental Psychology and Education, AJ has taught disabled and autistic students and volunteered extensively in the Minneapolis Public Schools. They are also the sole proprietor of a sewing and alterations business.
Lila Khan holds a Bachelor's degree in Neuroscience and is currently a graduate student at the University of Minnesota-Twin Cities pursuing her Master's degree in Family Social Science, as well as a certificate in Nonprofit Management. Her research is focused on health and well-being in families with autistic children, with a special interest in cultural and religious diversity in families. She is currently the Lead Graduate Research Assistant for the Autism Mentorship Program.
Zaibunnisa (Zeba) Ahmed is a master's student majoring in Integrated Behavioural Health focusing on addiction and co-occurring mental disorders. She has previous work experience in India, at various mental health organizations, private, government, and non-profit. As a research enthusiast, her interest in multicultural perspectives on mental health led to her joining the Autism Mentorship Program. She performs various research-related tasks, including meeting with potential participants to obtain their consent, determine their study eligibility, and collect data. She is looking forward to working with clients from different cultural backgrounds and broadening her perspectives on the various determinants of mental well-being.
Dr. Rebekah Hudock is an Assistant Professor and Pediatric Neuropsychologist in the University of Minnesota’s Department of Pediatrics. She conducts diagnostic evaluations and therapy programming through the Autism & Neurodevelopment Clinic at the Masonic Institute for the Developing Brain (MIDB). Dr. Hudock’s research focuses on development and adaptation of clinical and community-based programming to support autistic adolescents and young adults and others with neurodevelopmental conditions and their caregivers. Current projects and programs focus on mentoring, transition to adulthood, social relationships, managing anxiety, and helping families understand and manage challenges related to ADHD. She is also a MNLEND faculty mentor.
 Maenner MJ. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018. MMWR Surveill Summ. 2021;70. doi:10.15585/mmwr.ss7011a1
 Data and research. Minnesota Autism Portal. Accessed July 20, 2022. https://mn.gov/autism/about-autism/data-and-research/
 American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (5th Ed., Text Rev.).; 2022. https://doi.org/10.1176/appi.books.9780890425787
 Roux, Anne M., Shattuck, Paul T., Rast, Jessica E., Rava, Julianna A., and Anderson, Kristy, A. National Autism Indicators Report: Transition into Young Adulthood.
 Goerdt, Weiler, & Hudock. Feasibility and Pilot Evaluation of the Autism Mentorship Program. Published online 2021.
 Validating a Mentoring Relationship Quality Scale: Does Match Strength Predict Match Length? - Jean E. Rhodes, Sarah E. O. Schwartz, Margaret M. Willis, Max B. Wu, 2017. Accessed July 8, 2022. https://journals.sagepub.com/doi/full/10.1177/0044118X14531604
 Beck, Steer, & Brown. Manual for the Beck Depression Inventory-II. Published online 1996.
 Beck & Steer. Beck Anxiety Inventory Manual. Published online 1993.
 Ebesutani C, Drescher CF, Reise SP, et al. The Loneliness Questionnaire–short version: An evaluation of reverse-worded and non-reverse-worded items via item response theory. J Pers Assess. 2012;94(4):427-437.
 Jose PE, Ryan N, Pryor J. Does Social Connectedness Promote a Greater Sense of Well-Being in Adolescence Over Time? J Res Adolesc. 2012;22(2):235-251. doi:10.1111/j.1532-7795.2012.00783.x
 Skinner EA, Kindermann TA, Furrer CJ. A motivational perspective on engagement and disaffection: Conceptualization and assessment of children’s behavioral and emotional participation in academic activities in the classroom. Educ Psychol Meas. 2009;69(3):493-525. doi:10.1177/0013164408323233
 Long ECJ. Measuring Dyadic Perspective-Taking: Two Scales for Assessing Perspective-Taking in Marriage and Similar Dyads. Educ Psychol Meas. 1990;50(1):91-103. doi:10.1177/0013164490501008
 Rosenberg M. Society and the Adolescent Self-Image. Princeton University Press; 1965. Accessed July 8, 2022. https://www.jstor.org/stable/j.ctt183pjjh
 Diener E, Wirtz D, Tov W, et al. New Well-being Measures: Short Scales to Assess Flourishing and Positive and Negative Feelings. Soc Indic Res. 2010;97(2):143-156. doi:10.1007/s11205-009-9493-y