An Evaluation of Support Needs, Gaps and Perceived Solutions for Children, Adolescents and Young Adults with ASD: Lived Experience and the Need for Service System Advancement

Background: Clinical experience in autism highlights that improved access and coordination of services for persons with autism are needed.  However, there continues to be a lack of systematic attention given to understanding individual and family service-related need, and identifying the most pressing areas for service improvement.  

Objectives: This mixed method study, based on a case study design, examined the lived experience of young persons with ASD </=25 years of age, and their families, with a focus on service needs, current access to resources, and potential gaps between services needs and access. 

Methods: Multi-dimensional data collection, drawn from the children, youth and young adults with autism and their parent(s), comprised the following:

(1)   Autism assessment measures examining diagnostic symptomatology, cognitive functioning, language skills, adaptive functioning, academic achievement, anxiety, attention, behavioural, social and emotional supports, sensory-based symptoms, quality of life, and parent stress;

(2)   Child and parent qualitative interviews exploring perceived experiences and needs for services; and

(3)   Family assessment data examining context and family dynamics relative to services used and needed. 

Participants: A total of 30 comprehensive case studies with >60 participants (young person and parent[s]) were stratified across age cohorts as follows:  (i) preschool: n=8 family units, (ii) school age: n=7 family units, (iii) adolescent: n=8 family units, and (iv) young adult: n=7 family units.  Participants were further stratified for range of backgrounds such as child functioning, services received, cultural background, functioning, and household SES.  A comprehensive inter-professional assessment model was trialed using an integrated ‘tag team’ assessment approach. 

Results: The ‘tag-team’ approach reportedly resulted in an enhanced (family-centred) research experience for participants.  Findings identify young persons with autism and their families as profoundly impacted by autism and the need for vigilant family and community care. However, needs were consistently reported to not be met with sufficiently resourced service plans and resources.  Care was largely uncoordinated, suggesting a patchwork of limited resources. Generally, parents expressed frustration and in some cases, desperation, as they independently navigated the service delivery system.  Over time, many parents described symptoms of exhaustion and burnout, yet also demonstrated acumen in dealing with the needs of their child. Transitional challenges and mental health service gaps presented formidable barriers to system access, navigation and family quality of life; and these challenges are currently insufficiently addressed by current service options. Overall, findings highlight the need for improved service delivery, continuity of care, navigational support, and family-centred models that offer relationally-based generative interactions that support access to a sufficient array of services. 

Conclusions: These findings critique existing models of service delivery in that these models obscure and under-treat pressing problems and needs.  Services tend to remain uncoordinated and largely unresponsive to the challenges of persons with autism over time and development.  Participants recommend a service delivery approach that is integrated and coordinated, and comprehensively addresses the complex and shifting needs of children and adults with autism.