By Emma Hinze, Professor Tony Attwood and Dr. Michelle Garnett.
Over the last decade, there has been a significant increase in the number of women seeking diagnostic assessments for autism. Many of these women are self-referred, often after recognising autistic characteristics in themselves following the diagnosis of a child or through learning about autism from media and autobiographies that resonate with their own experiences. This growing awareness among women is leading to more diagnoses later in life, which presents unique challenges and opportunities for understanding their identity and experiences.
Additionally, the pathway to a diagnostic assessment for many autistic adults includes the recognition of a co-occurring mental health condition. Conditions such as depression, anxiety disorders, borderline personality disorder, addiction, PTSD, chronic fatigue syndrome, and eating disorders are often conferred before a diagnosis of autism. Specialists in these areas may notice atypical developmental histories and profiles of abilities in their patients, eventually referring them for a diagnostic assessment by a colleague specialising in autism.
However, there is also research showing that many men have missed out on an early diagnosis. Many autistic men retrospectively identify early indicators, such as differences in social preferences and sensory sensitivities, that were unrecognised by educators and healthcare professionals. For example, a study by Lupindo et al. (2022) reveals how behaviours dismissed as typical gender-conforming activities, for example, heightened activity in boys, may mask underlying autistic traits. This oversight can be attributed to a historical lack of awareness and understanding of the subtleties of autism, particularly how autism can present differently across genders and personalities.
Psychological Impact of Delayed Diagnosis
The consequences of a missed or misdiagnosis in childhood extend well into adulthood. Many autistic adults experience significant psychological distress, including anxiety, depression, and even suicidal ideation, due to missing out on understanding and support and feeling different from their peers in a negative way from an early age, with no explanation other than “there’s something wrong with me”.
Lupindo et al. (2022) highlighted the severe emotional distress experienced by late-diagnosed autistic men due to undiagnosed autism. For example, one participant, Philip, recounted his experiences with bullying and isolation, which led to severe emotional distress: “I’ve been cut on my back with a razor, had my head pushed into a toilet, physically beaten… I felt isolated and anxious.”
Internalised stigma and negative comments from others further erode self-esteem. Janine’s reflections captured this well: “I was too shy, too anxious, not clever enough, not a good enough friend… I felt so lacking as a person” (Lilley et al., 2021). This self-perception, influenced by the negative feedback from others, often leads to a persistent sense of inadequacy.
Mental health issues such as anxiety, depression, and suicidal thoughts are prevalent among this group. Sarah, feeling “depressed and isolated” since university, attempted suicide multiple times. Lisa, who first had suicidal ideations in adolescence, shared, “I used to shut myself in my room… There were times when I wanted to die and so forth. I’ve had that through my life” (Lilley et al., 2021).
The Relief and Validation of a Late Diagnosis
Despite the challenges associated with a late autism diagnosis, many adults report a profound sense of relief and validation upon receiving their diagnosis. Understanding the underlying reason for their lifelong struggles provides a framework for self-acceptance and a new perspective on their experiences, past and present.
Receiving a diagnosis can illuminate past difficulties and offer a way forward. Many late-diagnosed autistic adults described the diagnostic process as a turning point that allowed them to understand their behaviours and develop coping strategies (De Broize et al., 2021). For example, one autistic adult emphasised the clarity it brought: “It has helped me understand why I find it difficult building connections with people” (Lupindo et al., 2022).
Similarly, others found that receiving a diagnosis allowed them to reevaluate their past and embrace their true selves. This pivotal moment was described as “almost like I was revisiting my whole life and realised, actually I’m not a bad person, I’m not faulty” (Lilley et al., 2021). Others expressed feeling “like I can be proud of who I am; I don’t have this shame any more” and how receiving an autism diagnosis “puts everything in your life in a different light.”
Identifying as autistic has profoundly changed many autistic adults’ sense of self. Moments of realisation, such as “everything just clicked into place,” provided “an incredible feeling to finally know why.” Some referred to their diagnosis as a “lightbulb moment,” allowing them to “reconstruct my perspective of who I am and who I want to be.” For many, it “helped me understand myself better… There’s now rhyme to the reasoning” (Lilley et al., 2021).
The diagnosis often meant they no longer felt the need to conform to societal norms. This newfound understanding enabled them to embrace their true selves fully: “I can finally be me!” For others, having this knowledge was a powerful tool for self-forgiveness and acceptance. As one autistic adult shared, “Having that knowledge was such a powerful thing because I could understand and forgive myself. It’s okay to want to avoid going to the mall desperately. It’s okay to hide inside and do all of your shopping online instead of talking to people in shops… There’s nothing wrong with that” (Lilley et al., 2021).
The diagnosis also helped dispel long-held negative self-perceptions. One individual expressed, “It was awesome to finally know I wasn’t a broken person, or a bad person, or dumb, or stupid, or all the other things I’d beaten myself up about for so many decades” (Lilley et al., 2021). These reflections highlight the transformative impact a diagnosis can have, providing clarity, understanding, and a renewed sense of self-worth. The diagnosis allows for a better understanding of past behaviours and experiences, fostering self-acceptance and enabling autistic individuals to move forward with greater confidence and authenticity.
Some, however, had mixed feelings about their diagnosis. One autistic adult described their journey as “a bit of a blessing and a curse,” still unsure of what it means for them. Another felt disappointed that “so many things still stay the same,” adding, “I don’t know if I expected to wake up and go, ‘hey I’m autistic,’ to everyone and then the world was going to change. And it hasn’t.”
Conclusion
The journey to a late diagnosis of autism is fraught with challenges, yet it also opens doors to self-discovery and acceptance. By promoting greater awareness and understanding of autism across the lifespan, society can better support those diagnosed later in life in navigating their conditions. Furthermore, a late diagnosis can profoundly impact an individual’s mental health and self-perception, emphasising the importance of recognising and affirming neurodiverse experiences at any age. Continued research and advocacy are essential in creating an inclusive environment where autistic individuals, regardless of when they are diagnosed, can thrive.
Where to from here:
We have created a half-day course for Autistic Women that will be live webcast on Friday 6th September. We describe the strengths and abilities commonly experienced by autistic women, as well as key challenges, including self-understanding, developing an authentic self, navigating the workplace, executive function, including ADHD, developing relationships whilst staying true to oneself, self-advocacy and issues of mental health including anxiety, depression, autistic burnout and eating disorders. Our presentation is based on recent relevant research and our combined 80 years of experience in autism. We discuss autism in females aged 17+.
NB: Whilst there is some overlap with content from our previous full-day event, Autistic Girls & Women, this half-day event was developed to allow full focus on issues relating to autistic women aged 17+ years, including transgender and men who camouflage.
We created our online course Autistic Adults to help autistic adults understand themselves through the lens of autism, discover ideas and strategies to meet their challenges, and assist professionals involved in helping autistic adults. Our topics include:
coping mechanisms for growing up and being autistic in a world dominated by non-autistic people;
- leaving home and becoming independent;
- creating or extending a social network;
- understanding and accepting the authentic self;
- finding and keeping a partner;
- being a parent;
- employment issues;
- managing executive function challenges;
- autism over the adult lifespan;
- mental health, including managing anxiety and depression;
- physical health
- the effects of the discovery of autism later in life;
- well-being as an autistic adult
References
Lilley, R., et al. (2021). A way to be me: Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood.
De Broize, M., et al. (2021). Exploring the experience of seeking an autism diagnosis as an adult.
Mason, D., et al. (2021). Older age autism research: A rapidly growing field, but still a long way to go.
Lupindo, B. M., Maw, A., & Shabalala, N. (2022). Late diagnosis of autism: Exploring experiences of males diagnosed with autism in adulthood.
