After receiving an autism diagnosis in adulthood, many individuals experience a mix of relief and confusion but are left without adequate support.
Services often focus on diagnosis rather than what comes next, leaving people to navigate identity, emotions, and practical challenges alone.
Accessible, affirming resources are urgently needed to help adults process their diagnosis, build self-understanding, and connect with supportive communities.
Edwards, C., Love, A. M., Cai, R. Y., Heyworth, M., Johnston, A., Aldridge, F., & Gibbs, V. “I’m not feeling alone in my experiences”: How newly diagnosed autistic adults engage with a neurodiversity-affirming “Welcome Pack”. Autism. https://doi.org/10.1177_13623613251335070
Key Points
- Focus: The study explores how newly diagnosed autistic adults engage with a self-guided, neurodiversity-affirming resource called the “Welcome Pack.”
- Research Aim: To examine how the “Welcome Pack” supports identity development and post-diagnostic adjustment among late-diagnosed autistic adults.
- Approach: Reflexive thematic analysis within a qualitative framework grounded in experiential, constructionist epistemology.
- Findings:
- The “Welcome Pack” fostered belonging through shared narratives.
- It was one of several tools aiding self-understanding, with some participants wanting more practical guidance.
- Emotional responses included both grief over past masking and new self-compassion.
- Participants faced challenges in self-advocacy and educating others.
- Implications: Self-guided tools can offer meaningful post-diagnostic support but are most effective when integrated into broader systems of peer connection and practical services.
Rationale
Many autistic adults are diagnosed later in life, often after years of masking their traits and struggling with unidentified neurodivergence.
The diagnostic process is fraught with barriers including societal biases, lack of professional awareness, and camouflaging behaviors—particularly among women, transgender, and non-binary people.
Although a diagnosis can be validating, it may also prompt grief, confusion, and isolation, especially when post-diagnostic support is inadequate.
Existing support programs tend to be resource-intensive and geographically limited, leaving many adults underserved.
Self-guided tools like the “Welcome Pack” are promising due to their accessibility and scalability.
Research Questions:
- How do newly diagnosed autistic adults experience the “Welcome Pack” as a self-guided resource?
- How does it contribute to their broader post-diagnosis journey?
Method
- Sample: 11 formally diagnosed autistic adults in Australia (within 6 months of diagnosis), aged 23–60. Most identified as female; participants were predominantly White, with some diversity in ethnicity and co-occurring conditions (e.g., ADHD, anxiety).
- Setting: Participants were recruited through adult autism services and social media. The study focused on individuals without intellectual disabilities.
- Data Collection: Semi-structured interviews were conducted via phone, video, or written responses. Participants engaged with the “Welcome Pack” over two months before being interviewed.
- Data Analysis: Reflexive thematic analysis (RTA) was used, combining semantic and latent coding. NVivo or similar software is not mentioned, suggesting manual analysis. Themes were reviewed collaboratively by a team including autistic researchers.
Results
Four main themes and seven subthemes were identified (see thematic map on page 5 of the paper):
Theme 1: Finding Belonging Through Community and Representation
Subtheme 1.1: “I’m not feeling alone in my experiences”
Personal stories in the “Welcome Pack” fostered a strong sense of connection. “I’m not feeling alone in my experiences” was a recurring sentiment.
“Look at all these people that are out there doing this and loving this and seeing this and how they felt really similar to mine, and to be seen and heard is such a big value of mine, but never really happened in a way that did when I read that book [‘Welcome Pack’]—was huge for me.” —Bonnie
Subtheme 1.2: A desire “to connect with others”
Participants wanted peer connection beyond the written stories. Many expressed a desire for structured group discussions or social opportunities.
“I guess that’s kind of the part that I haven’t really found yet, like, aside from my work colleague, you know, I would like to connect with others that are late diagnosed.” —Mika
Theme 2: A Range of Tools and Support Needed
Subtheme 2.1: “This information would have been so useful at that very starting point”
Participants felt the “Welcome Pack” would have been most useful at the start of their diagnostic journey.
“If I had this [‘Welcome Pack’] right at the beginning, probably would have got even more out of it. So, think that, like the journey is, doesn’t really start at diagnosis.” —Robyn
Subtheme 2.2: “Welcome Pack was just one of many sources”
It was viewed as one of many tools, alongside podcasts, peer advice, and online communities.
“It’s kind of the cumulative effect of, you know, the ‘Welcome Pack’ and the online communities. And I also have a work colleague who was late diagnosed as well . . . so I guess it was a combination of all those things.” —Mika
Subtheme 2.3: “Always want stuff that’s very practical and relevant to me”
Participants sought more practical content, such as unmasking strategies and workplace advocacy advice.
“I guess that masking and camouflaging bit, because that’s the area that I feel I need to work on the most. So that probably stood out the most. I probably could have read more on that. If you have more in there, I would have definitely dived a bit deeper there.” —Mika
Theme 3: Emotional Reflections After Diagnosis
Subtheme 3.1: “My entire life I was masking”
Grief over years of masking and internalized self-criticism was common.
“Grief . . . but not because of the diagnosis, but because of how badly I treated myself for so many years . . . I pretty much beat myself, I’d say, for 35 years . . . grieving for not knowing how my brain works, for thinking that I was never as good as everyone else.” —Bonnie
Subtheme 3.2: “Just made you be kinder to yourself”
Participants developed greater self-compassion. The resource helped them reframe their experiences and reduce self-blame.
“I just realized how much I wasn’t looking after my health, like I was prioritizing responding to how other people wanted from me without like ever pushing back very much.” —Sam
Theme 4: Navigating Self-Advocacy and Educating Others
Participants were motivated to educate family, friends, and employers but often lacked the tools to do so effectively. The “Welcome Pack” helped in some cases, but gaps remained, especially in workplace contexts.
“My workplace isn’t set up to deal with my disability, and so many people have so little knowledge, and yeah, it’s almost like there’s this new burden that maybe can help with some of the others, but I can’t really. I feel the struggle of not knowing where to even start with that.” —Robyn
Insight
This study highlights the power of identity-affirming narratives in reducing isolation and supporting autistic adults in the early post-diagnostic phase.
Participants described the “Welcome Pack” as a validating tool, especially when existing services were lacking or inaccessible. It bridged the emotional and cognitive gap between diagnosis and identity integration.
Compared to structured peer programs, the pack offers scalable support. Yet its value was enhanced when used alongside community and relational resources.
This suggests future directions in blended supports—self-guided materials paired with peer engagement and practical coaching.
Clinical Implications
- For Practitioners:
- Offer the “Welcome Pack” alongside formal diagnosis to facilitate early identity processing.
- Recommend additional peer and professional supports tailored to workplace navigation and unmasking.
- For Policymakers and Services:
- Invest in post-diagnostic care that integrates both scalable resources and peer-facilitated programs.
- Recognize the importance of lived experience in designing support tools.
- Challenges:
- Ensuring accessibility for non-text-preferred users (e.g., those with dyslexia).
- Overcoming systemic underfunding and service fragmentation.
Strengths
This study had several methodological strengths, including:
- The study was led by a team that included autistic researchers, ensuring authenticity and reflexivity in interpretation.
- The use of reflexive thematic analysis allowed nuanced insights into participant experiences.
- Diverse communication formats (written, phone, video) respected neurodiverse communication preferences.
- The research addressed an important and underexplored transition point in autistic adults’ lives.
Limitations
This study also had several limitations, including:
- The sample was small (N=11) and demographically skewed toward White, female-identifying individuals.
- Only those with a formal diagnosis were included, excluding self-identifying autistic adults.
- The focus on short-term experiences may overlook evolving needs over time.
- The study did not deeply explore how the “Welcome Pack” interacts with other resources in practice.
- As a text-based tool, the “Welcome Pack” may not meet all accessibility needs.
Socratic Questions
- Methodology & Sample:
- How might the findings have differed if the study included self-identified autistic adults or a more diverse sample?
- What are the benefits and drawbacks of using reflexive thematic analysis with a small participant group?
- Findings & Interpretation:
- Could the participants’ emotional shifts be attributed to the diagnosis itself, rather than the “Welcome Pack”?
- How does reading about others’ experiences influence one’s own identity development?
- Practical Application:
- What other types of post-diagnostic resources could complement the “Welcome Pack”?
- How can clinicians ensure that self-guided materials are accessible to individuals with varying literacy levels or learning preferences?
- Theoretical Implications:
- In what ways does this study support or challenge deficit-based models of autism?
- How might a neurodiversity-affirming framework reshape the goals of post-diagnostic care?
- Future Directions:
- How could this study be extended to evaluate long-term outcomes of using self-guided resources?
- What might a hybrid support system look like that combines the strengths of both group-based and self-directed approaches?
