Season 6, Episode 7: Aging as an Autistic Person with Prof. Sandra Thom-Jones
This week Monique interviews Professor Sandra Thom-Jones about aging as an Autistic person.
Sandra is an Autistic author, artisan, academic, and advocate. She provides consultancy services to education, employment, and healthcare providers, and supports for autistic people through her consultancy, Autistic Professor.
Sandra is the author of Growing in to Autism, and she has undertaken numerous research projects in partnership with the Autistic community on the experiences of autistic people and the knowledge and attitudes towards autism in the community; including research that won the Autism CRC’s 2019 and 2021 awards for research translation and the 2022 award for inclusive research.
In this episode, Monique and Sandra cover:
Sandra’s experience of her neurodivergence throughout her life and her path to identifying her Autistic neurotype.
Why do older Autistic adults tend to be ‘invisible’ to society at large, and what factors contribute to the support needs of this population
Generational trends in the understanding of and meaning associated with an Autism diagnosis, and the implications for disclosure and self-advocacy.
The unique needs of Autistic folk when navigating later stages of life like menopause, increasing healthcare needs, aged care, retirement, and managing family changes and transitions.
The importance of discarding neuro-normative expectations about what aging or retirement ‘should’ look like, and Sandra’s tips for a joyful retirement as an Autistic person.
[00:01:11] Sandra’s experience of her neurodivergence throughout her life and her path to identifying her autistic neurotype
Key Takeaways:
Neurodivergence can be understood on multiple levels. Sandra explains that, while the term is debated academically, she finds comfort in defining it as referring to people whose brains are wired different—not faulty, just different.
The concept of neurodivergence shifts the narrative away from seeing Autism and ADHD as problems to fix, encouraging an acceptance of differences. Sandra likens it to being “a banana, not an apple”—just another way of being, and no less valid.
Sandra recalls growing up feeling fundamentally flawed and deeply aware of her differences. Without the language or diagnosis to frame her experiences, she believed she was faulty for not fitting in socially and blamed herself for struggling where others didn’t.
Her journey toward self-understanding was shaped by her children's diagnoses. When teachers suggested that her children’s behaviour was problematic, Sandra was surprised, seeing many of their traits as completely normal—just how she had always thought.
She describes the common experience of being diagnosed after one’s children, especially among older generations who missed opportunities for early identification. The idea that Autism only affected boys delayed her realisation of her own neurodivergence.
As her sons grew older, they helped her recognise similarities between herself and them. Through their encouragement, she began exploring her Autistic identity, realising how much of her experience aligned with theirs.
There is a strong genetic link in Autism. Through Sandra’s research with over 90 Autistic parents, she found a recurring pattern: most parents with Autistic children recognised their own Autism only after their children were diagnosed.
The evolving understanding of Autism is opening up space for many people to finally make sense of their experiences. Many parents are now discovering their own Autistic identity later in life, thanks to increased awareness and diagnoses within families.
Sandra’s late Autism diagnosis as profoundly impactful, shifting her understanding of herself in unexpected ways. It validated her sense of identity, silencing lingering doubts that she was simply “a faulty human being” using Autism as an excuse.
The diagnosis gave her the confidence to advocate for her needs, especially in work environments. While she had been comfortable advocating for others, the formal recognition empowered her to ask for accommodations without self-doubt.
Gaining clarity around her Autism allowed her to stop judging herself against neurotypical standards. This realisation gave her permission to be kinder to herself, reducing self-imposed pressure and embracing ways to manage her life more comfortably.
She now delegates sensory-challenging tasks, like grocery shopping, to her husband, realising it’s okay to lean on others. She jokes about sitting in the car, texting him a shopping list—an arrangement that works well for their partnership.
She reflects on how hard it is for adults to access a diagnosis, despite the life-changing impact it can have. Sandra criticises the government for making the process costly and inaccessible for many, leaving adults without necessary accommodations or validation.
The diagnosis also provides leverage for workplace accommodation, and having formal documentation makes it more difficult for employers to deny reasonable adjustments, highlighting the importance of accessible diagnostic pathways for all adults.
[00:16:58] Why do older Autistic adults tend to be ‘invisible’ to society at large, and what factors contribute to the support needs of this population
Key Takeaways:
A persistent belief in both medical research and public perception is that Autism is primarily a childhood condition. This misconception leads to insufficient research, services, and support for Autistic adults.
Many Autistic adults either mask extensively to fit in, becoming invisible, or withdraw from society due to stigma and discrimination. As a result, they are less visible and seen as less of a priority for research and policy.
Sandra highlights the research gap for older Autistic adults, noting that if all the participants from every study on Autistic people over 50 were gathered, they could fit in her house—underscoring the neglect of this demographic.
The lack of understanding and visibility for older Autistic adults is compounded by intersecting identities, such as being an older Autistic woman, where both ageism and ableism contribute to this invisibility.
Until 2020, menopause had never been studied in Autistic women. Only a handful of small studies have been conducted since, illustrating the oversight in research on how hormonal changes impact neurodivergent women.
There is a concerning assumption in education and society that if individuals have managed to cope thus far, they will continue to do so. This overlooks the impact of lifelong masking, which leads to significant psychological and physical health consequences later in life.
Older Autistic adults often face a “support cliff”—just as their need for support peaks due to burnout and exhaustion from masking, they encounter a societal assumption that they no longer need help.
It is crucial to address the intersection of ageism and ableism, as the lack of necessary support for older Autistic adults represents a significant crisis. These individuals are often at their most vulnerable when society assumes they have fewer needs.
There is a strong call for more inclusive policies, services, and research to ensure that all Autistic individuals, regardless of age, receive the necessary support.
It is important to recognise that stress and trauma accumulate over a lifetime, and Autistic individuals frequently experience increased exposure to adverse events. As a result, Autistic burnout and occupational burnout typically occur earlier for these individuals compared to neurotypical people, a reality that is often overlooked.
There is a harmful assumption that adults no longer need support, even though responsibilities, demands, and expectations increase with age. Without adequate support, many Autistic people experience severe burnout, leading to significant mental and physical health issues.
Support needs vary across the lifespan, with Autistic individuals requiring more assistance at certain stages or in specific situations and less at others; however, ongoing access to support is essential.
Sharing her personal experience, Monique describes how burnout has impacted three generations of her family. Her grandfather, believed to be neurodivergent, experienced burnout and chronic health conditions, forcing him into early retirement at 50. Her father burned out at 40, also developing health issues, and Monique herself burned out at 23 while studying for her master’s.
Monique’s story highlights the intergenerational pattern of burnout among undiagnosed neurodivergent individuals in her family, underscoring the urgent need for change in how Autistic people are supported throughout life.
The conversation reflects a critical call for lifelong support to prevent the devastating impact of repeated burnout and improve the quality of life for Autistic individuals across generations.
“If we look at all the research on the impacts of masking—the huge psychological and physical health consequences of masking—people get to the age of 50 or 60, and they are exhausted. They are burnt out, and they have so many negative health consequences of that.
So, they hit that age at a point where their support needs are actually absolutely maximised, and they’re hitting this assumption that, “Okay, you’re a 60-year-old person. You’ve managed all this time. You don’t need anything.” But they’re actually hitting a point where they need more support than ever before.”
[00:27:28] Generational trends in the understanding of and meaning associated with an Autism diagnosis, and the implications for disclosure and self-advocacy.
Key Takeaways:
Sandra, reflecting on being part of Generation X, describes the stigma surrounding Autism during her upbringing. Diagnoses were rare, and children were pressured to conform to societal norms, with families believing that blending in was necessary for success.
The generational shift is apparent. While older generations, including parents and grandparents, often avoid acknowledging neurodivergence, younger generations are embracing it.
Sandra highlights how her sons confidently disclose their Autistic identities, inspiring her to do the same.
Disclosing Autism at work brought Sandra mixed reactions. Many younger colleagues found it empowering, but peers from her own generation warned it was risky and could impact her career. Even senior professionals often choose not to disclose, fearing negative consequences.
The visibility of older Autistic professionals across various fields is crucial. Showcasing success in careers such as law, healthcare, and academia can challenge stereotypes and inspire younger Autistic individuals to embrace their own identities.
Millennials and younger generations are driving change by normalising conversations about mental health, neurodivergence, and therapy. However, the majority of decision-makers in workplaces and healthcare still come from older generations, where stigma persists.
There is a need for those in power—primarily Gen X and baby boomers—to shift their attitudes toward neurodivergence. As these generations control access to promotions, resources, and accommodations, their awareness is crucial for creating inclusive environments.
Visibility and advocacy are essential, even when disclosure carries risks. Sandra reflects on how disclosing her own diagnosis provided hope and encouragement to junior colleagues, demonstrating that it’s possible to be successful while being openly Autistic.
Generational change is needed not only to support ageing Autistic adults but also to create a strong foundation for younger neurodivergent people. Sandra sees younger generations as role models for openness and hopes her own generation will help foster inclusive spaces for them.
[00:38:15] The unique needs of Autistic folk when navigating later stages of life like menopause, increasing healthcare needs, aged care, retirement, and managing family changes and transitions.
Key Takeaways:
Navigating later stages of life as an older Autistic person comes with unique challenges, but research on these experiences is scarce. Menopause, for instance, brings heightened sensory issues and mood swings, which are significantly more intense for Autistic women, yet the medical system is ill-equipped to address these specific needs.
Medical care becomes more complex as people age, but for older Autistic individuals, healthcare barriers are intensified. Sensory issues, communication difficulties, and the lack of understanding about Autism in medical professionals often lead to misinterpretation, resulting in unmet healthcare needs.
Aged care presents a daunting prospect for many older Autistic people, as it often strips them of autonomy. Sensory control, dietary preferences, and personal routines may be compromised, which is particularly distressing for those used to managing their environments carefully to accommodate their neurodivergence.
There is a notable lack of research on what appropriate aged care looks like for Autistic individuals. Current aged-care systems are not designed to accommodate Autistic needs, and the assumption that all older people share similar experiences can dismiss the specific difficulties Autistic people face.
Autistic individuals who have spent a lifetime masking or conforming to societal norms often view aged care with dread, fearing a return to environments where their needs are overlooked or labelled as being “difficult” or unsociable. This echoes the struggles they faced in earlier life, where conformity was imposed.
Monique compares aged care to the social dynamics of high school, where individuals are forced into shared living situations, often losing autonomy and control. The fear of navigating social cliques and being unable to escape from overstimulating environments is a recurring concern.
Losing the ability to retreat to a personal, safe space, which many Autistic individuals have at home, is a significant concern in aged care. With limited control over their surroundings, older Autistic individuals may find it difficult to recharge and manage their sensory needs effectively.
There is an urgent need for research, policy changes, and aged-care systems that recognise the specific needs of Autistic people. Without these, the risk of significant distress, burnout, and poor quality of life for older Autistic individuals remains high.
Autistic families often have tight, insular bonds, with parents and children being deeply connected.For many Autistic parents, children are more than just family—they are close friends and key emotional supports, making the transition of children moving out particularly challenging.
External pressures, such as those from NDIS planners or societal expectations, often push the idea that adult children should move out by a certain age. Sandra questions these neurotypical norms, emphasising that every family should define what works best for them, whether that means children staying at home or choosing to move out.
Sandra shares her personal experience of navigating this transition, reflecting on the emotional impact of her son moving out and getting married. While delighted to welcome a daughter-in-law, she acknowledges the difficulty of seeing such close relationships change.
Societal expectations surrounding nuclear families and independence are relatively modern. Historically and across many cultures, intergenerational living has been common, highlighting that family structures vary widely, and there is no universal “right” way to organise family life.
Autistic families should feel empowered to structure their relationships and living arrangements in ways that feel right for them, without being driven by societal expectations. Whether children stay at home or move out, it’s important that these decisions align with what makes the family feel comfortable and connected.
Change is particularly difficult for many Autistic individuals. Transitioning to new routines and finding new ways to stay connected with adult children can be overwhelming, requiring time to adjust on both ends.
Even when adult children move out, support and connection often remain important. Building new routines to stay connected after children leave home is essential, underscoring that these transitions are significant for both parents and children to navigate.
Family dynamics and routines are unique and personal. What matters most is that the family feels supported and comfortable with the choices they make, regardless of societal norms.
[01:00:24] The importance of discarding neuro-normative expectations about what aging or retirement ‘should’ look like, and Sandra’s tips for a joyful retirement as an Autistic person.
Key Takeaways:
Sandra describes her “transition to retirement” as a gradual and intentional process, prioritising personal joy and interests. After stepping away from a senior academic role, she realised the importance of finding activities outside work that bring her fulfilment.
Autistic burnout played a key role in her decision to leave her full-time job. While the job itself aligned with her interests, the workplace dynamics—such as politics, meetings, and sensory overload—became unsustainable, highlighting the need for environments suited to neurodivergent needs.
Sandra found that moving away from a structured, salaried role gave her the freedom to explore non-work-related special interests. Without the pressure of obligations, she feels more in control of her time, choosing activities that either make her happy or contribute meaningfully to the Autistic community.
A key realisation for Sandra was rediscovering her hobbies—such as working on jigsaw puzzles, cataloguing her doll collection, and knitting—which had been buried under years of work. This rediscovery allowed her to envision a retirement that is deeply aligned with her interests.
Her version of retirement doesn’t conform to traditional expectations, such as joining social clubs or playing sports. Instead, it focuses on doing what brings joy, with the flexibility to adjust based on capacity and energy levels over time.
She reflects on how the absence of obligations has improved her quality of life. Without the constant pressure to attend meetings or meet others’ expectations, she feels more in control and empowered to do things at her own pace.
Sandra’s experience provides an important model for Autistic retirement, demonstrating that it can be a gradual, self-paced transition. Framing retirement as a shift toward activities that bring joy, rather than an abrupt loss of identity, makes the process more approachable.
For those approaching retirement, the advice is to start building the foundation for their “happy place” by identifying and gathering the supplies for the activities they love. This preparation ensures that retirement becomes a joyful, meaningful phase, rather than something to dread.
Connect with Prof. Sandra Thom-Jones:
You can find more of Sandra’s work through her website – www.autisticprofessor.com
Or follow her on Facebook Autistic Professor or Instagram @sandra_thomjones_au_author
Get a copy of Sandra’s book, Growing in to Autism, and pre-order her upcoming book, Autistics in Academia, through Cambridge University Press.
Follow Sandra on socials to stay updated on her next book, on the experiences of autistic people in the workplace!
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