In the study titled "A Qualitative Study of Adults' and Support Persons' Experiences of Support After Autism Diagnosis," researchers explored the post-diagnosis support experiences and needs of autistic adults and their support persons. The study involved interviews with 19 autistic adults and 4 support persons, focusing on their perspectives on formal and informal support, identity development, and suggestions for improving support experiences.
The findings revealed several key themes. Autistic adults and support persons found the system of formal support services confusing and challenging to navigate. Many adults missed out on support due to a lack of information and prohibitive costs. The contrast between adults' apparent capabilities and significant support needs often led to them being seen as both too disabled and not disabled enough.
Most professional support consisted of counseling and psychotherapy, with a need for more autism-informed services. Adults wanted support that embraced a positive understanding of autism and treated them as equal partners, focusing on their individual goals and values. Working-age autistic adults desired to learn new skills and support themselves through paid work but faced social challenges in job interviews and workplace communication. Adults with intellectual disability found sheltered employment unfulfilling and needed more support to transition to open employment.
Autistic adults wanted to share their diagnosis with friends and family to improve understanding and receive informal support. Positive disclosure often led to better communication and acceptance, while negative reactions added to social isolation. Mutual understanding and adjustment were crucial for both autistic adults and support persons. Support persons helped adults navigate life after diagnosis, but this often led to additional responsibilities and changes in relationship dynamics.
Connections with other autistic people, both in-person and online, were highly valued. These interactions provided understanding, acceptance, and informal support, though some adults preferred peers who matched their gender, interests, and support needs. Diagnosis and support led to self-discovery and deeper changes in how adults perceived their identity. Acceptance of autism coexisted with a desire to change certain aspects, and the importance of autism in their identity evolved over time.
The study highlights the need for comprehensive information and guidance from diagnosing clinicians, more diverse employment opportunities, and support services that respect individual goals and values. It also emphasizes the importance of positive autism awareness in society and the unique social needs of autistic adults with intellectual disability.
Huang, Y., Arnold, S. R. C., Foley, K.-R., & Trollor, J. N. (2024). A qualitative study of adults' and support persons' experiences of support after autism diagnosis. Journal of Autism and Developmental Disorders, 54(1157-1170).