A recent systematic review of research on the lived experience of receiving a diagnosis of autism in adulthood identified two main themes: constantly struggling and revelation (Nayyar et al. 2025). Struggles included getting a diagnosis, haphazard support, the costs of a late diagnosis and stigma.
There were several barriers to getting a diagnosis for some autistic adults, including inappropriate diagnostic practices such as using deficit-based criteria and overlooking scaffolding and coping strategies, sex and gender-related differences in presentation and referral pathways, health care professionals holding narrow schemas of autism, and limited access to experienced autism specialists. This is illustrated by the comments:
“Four to five years of depression and anxiety treatment…years of talking therapy… and not once did anyone suggest I had anything other than depression.”
“Oh, look, you’re a parent, and you got married, and you have a job; therefore, you can’t be autistic.”
Some adults reported long wait times and that they were “bounced around” between professionals. Cost was another barrier, including travel, time off work, and fees for private diagnostic assessments, particularly when funded pathways involved lengthy wait lists. Some adults also described communication challenges during assessment interviews, including difficulty identifying and describing emotions (alexithymia) and a tendency to interpret questions literally.
There was a range of experiences following the diagnosis. Some adults reported tangible benefits and autism-informed supports. However, some described minimal follow-up and felt unsupported after diagnosis, including reports of comments such as ‘we’re not here to follow up, only to diagnose.’ Some adults described being offered supports framed primarily within mental illness terms, which they experienced as inappropriate or offensive. Some also reported being declined, redirected, or excluded from mental health services following disclosure of autism.
Without an autism framework to contextualise their experiences, some autistic adults described internalising negative perceptions from people around them. They reported a lifetime of being criticised and misinterpreted by others, including being labelled rude or naughty by teachers. Longstanding experiences of social confusion, overwhelm, and reciprocal misunderstandings consistent with the double empathy perspective often led to increased social isolation and loneliness that persisted into adulthood. Some autistic women reported that not receiving an autism diagnosis earlier left them more vulnerable to abusive situations and described their diagnosis as a tool supporting greater self-advocacy and boundary setting in risky situations.
Many described compensating for social differences by suppressing autistic traits through unconscious social mimicry or consciously constructing a ‘false self’. This was described as exhausting, as illustrated in the comment:
“It’s kind of like a duck on water, you know it’s calm on the surface but sort of paddling really hard underneath.”
Some also reported a reliance on alcohol to cope in social situations.
Before diagnosis, some autistic adults described experiencing stigmatising responses from others to autistic characteristics and access needs, such as reduced eye contact, exhaustion following social engagements, and sensory sensitivity. For some, receiving a diagnosis reduced self-blame and helped contextualise traits and needs that had been stigmatised by others. However, accounts also indicated that experiences of prejudice and rejection often continued after diagnosis.
Many adults suspected their parental stigma related to autism contributed to delayed recognition and diagnosis, as illustrated by the following quotes:
“Having an autistic child would have been totally unacceptable for my mother, for her social status, for any reason.”
Disclosure was associated with some negative reactions, with the comment:
“It limits the expectations of others, who watch me more closely, or assume I will never be able to do things at work or socially that I think I can do.”
Early reactions to receiving a diagnosis of autism comprised complex and multiple thoughts and emotions. Many adults described relief at finally having an explanation and validation for their experiences and emotional responses, for example:
“Almost immediate relief to be able to put a name to the combination of symptoms I’ve had my entire life”
However, some were frustrated by realising the ongoing nature of their difficulties after decades of trying to ‘solve’ them.
One of the themes was the forging of an autistic identity and the reconstruction of their sense of self following diagnosis. For some, this self-understanding was experienced as a profound revelation, for example:
“It was the missing piece of the jigsaw, it put everything into place for me, and I got the bigger picture then…it all just came together.”
The diagnosis explained their lifelong difficulties and differences.
“Now that I know the explanation behind it all, I don’t feel so cruddy.”
The new vocabulary introduced by the diagnosis aided self-understanding and self-advocacy, and greater insight into their personal strengths and weaknesses. This enhanced their ability to prioritise needs and communicate them to others. There was increased self-acceptance and incorporation of autism into their self-identity. Some participants described residual anger or resentment toward health care professionals, teachers or parents for disregarding or dismissing their difficulties.
The diagnosis encouraged a change to the standards by which they judged themselves, fostering self-compassion. There was also pride in their accomplishments, as they reported having discovered and embraced autistic traits that had been hidden from others and from themselves. For some adults, higher self-esteem was associated with improved mental health and greater self-forgiveness.
Socially, the diagnosis provided access to the autistic community and support from other autistic people. The new community was highly valued, characterised by ‘fellow travellers’ or ‘finding one’s own tribe’ and by shared experiences absent from previous relationships. There was a sense of belonging and identity. For example: “Being in this club now, where people talk about their experiences, and having so many echoes of my own.”
These findings underscore that adult autism diagnosis can be both clinically consequential and emotionally significant, with substantial impacts when recognition is delayed or when post-diagnostic support is inconsistent. For mental health professionals, this highlights the importance of assessment processes that recognise diverse presentations, attend to masking and compensation, differentiate autism from trauma and other co-occurring conditions, and deliver feedback and reporting in ways that support understanding, agency, and access to appropriate supports.
Our Masterclass Day 1, Diagnosis for Autistic and/or AuDHD Adults, is designed to build discipline-specific knowledge and practical skills in these areas, including DSM-5-TR-based diagnostic decision-making, best-practice adult assessment processes, and therapeutic communication of results to support clear next steps.
For clinicians seeking to extend this capability beyond diagnostic assessment, Masterclass Day 2, Support and Therapy for Autistic and/or AuDHD Adults, focuses on translating understanding into neurodiversity-affirming care. It addresses biopsychosocial mechanisms underpinning mental health in neurodivergent adults, therapy adaptations across modalities, autistic and ADHD lived experience, and practical strategies to support identity development, safe unmasking, and clinically responsive support for common co-occurring concerns, including burnout, depression, anxiety, and trauma.
Nayyar, J. M., Stapleton, A. V., Guerin, S., & O'Connor, C. (2025). Exploring lived experiences of receiving a diagnosis of autism in adulthood: A systematic review. Autism in Adulthood, 7(1), 1-12. https://doi.org/10.1089/aut.2023.0152
