Examining the Transition to Adulthood in Autism: Challenges and Opportunities in the Aim of Thriving

David B. Nicholas, Ph.D., examines the transition to adulthood and its implications for autistic individuals. He presents the ecosystem mentality and discusses recent findings supporting a holistic and future-oriented integrated care system. The speaker details potential areas of capacity building within post-secondary education and employment and highlights the need for cross-sector collaboration and lifelong care. Nicholas summarizes the presentation, underscoring changes in contemporary discourse, and considers future avenues of research before the Q&A session.

In this webinar: 

0:00 – Autism Research Insitute introduction
1:52 – World Autism Organization introduction
4:40 – Speaker introduction
6:30 – Objectives and background
9:00 – Ecosystem mentality
10:14 – Study: Transition experiences for individuals in the autism ecosystem
11:35 – Results
13:30 – Mental health accommodations
17:28 – Recommendations
19:45 – Capacity building
24:48 – Post-secondary education
30:00 – Employment
36:07 – A new discourse
45:40 – Summary and conclusion
51:50 – Q & A

Introduction

Nicholas defines the presentation objectives and summarizes current literature on the transition experiences of autistic individuals (5:30). Specifically, he notes that support needs are not well understood across care and that the process of transitioning to adulthood requires more community/system-level support and increased focus on the individual (7:29). The presenter uses the metaphor of a pathway to illustrate the ecosystem mentality and highlights the observable increase in focus on quality of life (QoL) and community/system-level factors within the discourse (8:00). 

Study: Transition experiences for individuals in the autism ecosystem

The speaker describes a grounded theory study that used 64 semi-structured interviews with autistic youth and young adults, parents, and service providers to assess the transition experiences of individuals across the autism ecosystem (10:14). Key challenges faced by many participants included the need to research, find, and wait for services, laborious and complicated application processes, and having to work extremely hard while often being unsure of how to proceed or what to seek out (11:35). Participants also reported that the adult care systems are notably distinct from child/youth services and that, when attained, adult services are often insufficient relative to the needs. Many also cited a notable lack of understanding about support needs across the diverse autism experiences, specifically surrounding mental health and autism (13:30). The presenter shares a quote to illustrate these challenges: 

“[The service provider] said, ‘Well, just call the police, and they’ll take her out of the house.’ I said that would be the last thing [that should be done]. I would never… have the cops take her on a mental health warrant… I knew that [individual] would kill herself if I had done that, and so that was a horrible lack of support. Complete lack of understanding of autism combined with mental health issues…. Just take her, grab her, and put her, you know, drag her to the clinic (15:10).”

Many participants also noted that services are often rooted in the medical approach or a “deficit” orientation, and many access restrictions are based on characteristics outside an individual’s control (i.e., IQ, age, level of functioning). Nicholas asserts the need for cross-sectoral support and a comprehensive approach to addressing the many challenges associated with transitioning to adulthood in autism (15:50). 

Recommendations and capacity building

Despite the discussed challenges, Nicholas continues, there is a growing awareness and willingness to adapt to the diverse needs of autistic people and other neurodiverse groups. For example, many airports, libraries, transportation systems, and employers are already making strides in creating more inclusive and accommodating spaces, programs, and policies (19:20). The speaker asserts that moving forward, supports need to focus on knowledge transfer, tangible help, navigational assistance, and training/skill development (17:28). He underscores the need for stronger relationships and collaboration among diverse stakeholders and outlines three levels of capacity building (19:45): 

• Micro: individual and family support
  • Personal acceptance and flexibility in targeting individual needs
  • Increased expectations for life achievements and aspirations
  • Peer mentorship and support for parents to the role of “life coach”
• Mezzo: program and personnel development
  • Capacity development in residential and community support
  • Staff training 
  • Stronger relationships across diverse stakeholder groups/sectors
• Macro: Policy 
  • Increased funding, with targeted programming to adult services
  • Autistic voices in service planning and priority setting

Post-secondary education (PSE)

Nicholas discusses challenges for autistic people in accessing post-secondary education (PSE) and outlines the micro, mezzo, and macro capacities for change within this context (24:48). He considers the campus ecosystem holistically and discusses potential adjustments to course design, career/employment support, residence life, and campus policies that would accommodate autistic students (27:40). Priorities for accommodation in PSE include mentorship and peer support, supportive engagement with others across sectors, and opportunities/choices in accommodation for individuals across the autism spectrum (29:20). 

Employment

The speaker emphasizes that we must think of the autism ecosystem over time as transitions occur throughout our lives (30:00). Another major transition is PSE to employment. Nicholas shares a quote (31:00): 

“What my son needs now is job skills… he needs to survive in this world as a young adult, with or without his parents. Help! Because not every young adult with autism has parents or has the supports, right? Whether it be parents or other family members, not everyone has that. So he needs job skills; he needs life skills and life training.”

Employment challenges reported by participants included emotional/psychological, focus/concentration, social/relational, and environmental/sensory (31:45). The presenter explains that these challenges make the pathway to adulthood much more complicated than needed. He outlines the ecosystem components of employment and highlights supports and capacity building at the individual, community, and policy levels (34:05). 

A new discourse

Nicholas discusses emerging principles from this work, including intentional access (adult-based resources), multisector integrated engagement, and flexibility in resources (36:07). He highlights some characteristics of integrated navigational services, including linked networks, stigma reduction, coordination of services, and lifespan care. Study respondents specifically mentioned resource information, peer support, and individualized service as important components of navigational support services (38:25). The speaker explains how these characteristics give rise to the idea of integrated or universal care, which gives attention to the social determinants of health and accommodates individual and family needs (37:00). 

Current discursive frameworks, he continues, consider transitions across the lifetime and maintain a holistic view of resources and service system interactions (40:13). Nicholas asserts that characteristics commonly associated with adulthood push the notion of a singular path, or only one way to become independent (42:10). He posits that the pinnacle of adulthood is not so much independence and as it is QoL, being, belonging, and becoming, and the pursuit of aims and dreams (44:30).

Conclusion

Nicholas summarizes the presentation and crucial points. He stresses the importance of future-oriented approaches that consider individual agency and self-determination and highlights that all of this must be done in the interest of supporting and pursuing a good life on one’s terms and belonging in community (45:40). To support these shifts in the autism ecosystem, we need timely mobilization of evidence to action, increased engagement from relevant systems and stakeholders, proactive engagement around social determinants of health, and a greater focus on QoL as the pinnacle in this journey towards adulthood (47:14). The speaker shares research recommendations and sources (48:45) before the Q & A (51:50)