Why
In partnership with Reframing Autism and Griffith University, we examined the experiences of newly diagnosed Autistic adults engaging with Reframing Autism's neurodiversity-affirming resource, Welcome to the Autistic Community: A Welcome Pack (Welcome Pack). This resource, developed as an Autistic-led initiative, is freely available online to support individuals questioning their identity or navigating their early post-diagnostic journey.
Our research is crucial as it addresses the significant gap in post-diagnostic support for Autistic adults, a population often overlooked in autism research and services. By focusing on adult-specific needs and experiences, our research offers valuable insights into the role of the Welcome Pack in fostering self-understanding and connection
within the Autistic community.
How do newly diagnosed Autistic adults experience the Welcome Pack as a self-guided resource, and how does it contribute to their post-diagnosis journey?
The research
Recruitment
Eleven participants in Australia who had received an autism diagnosis in the past six months
Welcome Pack use
Participants used the Welcome Pack for two months
Interview
How the Welcome Pack influenced participants' understanding of autism, sense of identity and ability to navigate life post-diagnosis.
Analysis
Reflexive thematic analysis used to generate key themes
What we learnt
Four themes were identified from the experiences of participants who used the Welcome Pack.
1. Finding belonging through community and representation
- Feeling validated and connected
- Seeking opportunities for community engagement
“To be seen and heard is such a big value of mine, but it never really happened in a way that did when I read that book.”
“I guess that’s kind of the part that I haven’t really found yet … I would like to connect with others that are late diagnosed.”
2. A range of tools and support needed for the Autistic journey
- Foundational knowledge for early self-discovery
- A complementary resource
- The need for targeted guidance
“At the start of me thinking that I might be Autistic, I would have really loved those types of stories and just knowing that my experience is valid.”
“It [Welcome Pack] kind of tied everything in nicely together.”
“The thing that I really wanted was … navigating the workplace.”
3. Emotional reflections after diagnosis
- Grieving years of masking
- Developing self-compassion
“Grieving for not knowing how my brain works, for thinking that I was never as good as everyone else.”
“I left reading this feeling good about myself for the first time, and that was really helpful.”
4. Educating and advocating for others
“This might help people around me understand autism better … so it hasn’t just been like, this is my little book [Welcome Pack] for me, but I’ve sort of been sharing it with people.”
“My workplace isn’t set up to deal with my disability, and so many people have so little knowledge … I feel the struggle of not knowing.”
Publication
Edwards, C., Love, A. M., Cai, R. Y., Heyworth, M., Johnston, A., Aldridge, F., & Gibbs, V. (2025). “I’m not feeling alone in my experiences”: How newly diagnosed autistic adults engage with a neurodiversity-affirming "Welcome Pack". Autism.
Making a difference
This study highlights the significant value of the Welcome Pack as a neurodiversity-affirming resource that supports newly diagnosed Autistic adults during a critical transition. By fostering self-understanding, promoting self-compassion and providing practical strategies, the resource helps individuals navigate the complexities of their post-diagnosis journey.
Research team
- Dr Chris Edwards, Aspect Research Centre for Autism Practice (ARCAP), Griffith University
- Dr Abbey Love, ARCAP
- Dr Ru Ying Cai, ARCAP
- Dr Vicki Gibbs, ARCAP
- Dr Fiona Aldridge, Aspect Assessments
- Dr Alexandra Johnston, Reframing Autism, Griffith University
- Dr Melanie Heyworth, Reframing Autism
Started
2024
Ends
2025
Funding
Aspect
Reframing Autism
The Woodend Foundation