By Professor Tony Attwood and Dr. Michelle Garnett
Research has recently been conducted on autism over the age of 50 using semi-structured interviews. A study by Wake et al. (2021) included 150 research participants with an age range from 50 to 80 years, and Tony has been an associate advisor to a PhD study that used a detailed thematic analysis of ten autistic adults aged 53 to 74 years (Ommensen et al.). These studies and our extensive clinical experience are the basis of this two-part blog.
Quality of life
There have been several research studies on the quality of life for autistic adults. McConachie et al. (2009) confirmed that quality of life was associated with a positive autistic identity and other people’s understanding and acceptance of autism. Other factors affecting quality of life included mental health issues, the nature of friendships and external support and services. Mason et al. (2018) found that the quality of life was lower for autistic adults compared to the general population and that the positive predictors for quality of life were being employed, in a relationship, and receiving support. Negative predictors were mental health conditions and the severity of autistic characteristics.
Maja Toudal is a clinical psychologist and autistic colleague in Denmark. She conducted an Internet survey asking autistic adults to describe their concept of quality of life and well-being. Their responses included:
- To not be disturbed
- Not having to act a certain way just because it is supposedly normal or appropriate
- Having my own place to hide
- Being able to express myself and be understood
- Being able to excel in what I love to do
- Space to pursue interests/hobbies
- Daily engagement with preferred interests
- Freedom from excess sensory pain/disturbance
- Having a purpose in life
- Accepting my autism and working with it to create harmony in my life instead of difficulties
A sense of well-being and quality of life was associated with reduced aversive sensory experiences and being able to engage in a passionate interest. This is important information when supporting an autistic person of any age.
Many research participants in the Wake et al. (2021) study experienced mental health problems since their teenage years, but they did not understand what they were going through at the time and were not able to explain their thoughts and feelings to family and professionals effectively due to problems with interoception and alexithymia. In the above study, high levels of anxiety were reported by 74% of research participants and depression by 72%. with suicidal thoughts reported by 38% of participants. One in three of the research participants reported having post-traumatic stress disorder with a history of experiencing abuse in childhood and adolescence.
According to both the Ommensen et al. study and that of Wake et al. (2021), there was distrust and disdain for most forms of conventional mental health treatment and mental health professionals. They felt they were not listened to or understood and were unfairly judged and misrepresented, as illustrated in the following quotation. “They were not interested in me. They’re interested in the drugs they can sell”.
An aversion to prescription medication for a mental health diagnosis was a common theme. Some participants had been prescribed medication for anxiety or depression but found them either unhelpful or the side effects outweighed any beneficial effects. There was also the issue of compliance in taking the medication. Alcohol and illegal drugs were used during the early adult years by 36% of participants in the Wake et al. study, but this was reduced to 16% over the age of 50.
Recovery from depression was slow and lengthy, but most participants reported that as they had grown older, they had experienced an improvement in their mental health. This was often due to discovering strategies themselves through identifying patterns in their experiences and emotional reactions and reading and experimentation rather than advice or therapy from health professionals. Several participants in the Ommensen et al. study were of the view that psychological treatment was not worthwhile unless it was tailored to an autistic individual’s unique needs and circumstances. Since, for most research participants, professional help was not seen as a therapeutic option; alternative self-regulatory strategies were actively discovered and employed to regulate emotions. Some of these were maladaptive practices, such as the use of alcohol, but most were positive such as mindfulness, meditation, and physical activities, such as gardening. These were consistently mentioned as successful techniques for emotional self-regulation. These activities, and sometimes a combination of them, were typically enjoyed as calming solitary pursuits that had developed over the life span and were cited by several participants as important to helping them achieve a sense of peace and emotional stability without the negative side effects of medication.
Some conventional cognitive behaviour therapy techniques were successful, such as positive self-talk, as this quote describes:
“I used to try and sort of gee myself up and say, “oh come on for goodness sake” you know you can manage this” and all that sort of thing.”
According to Ommensen et al., with time and life experience, participants developed greater self-awareness and, ultimately, self-acceptance and self-forgiveness. “I think I’ve become more friends with myself”. Their positive appraisal of life left less room for negative emotions such as regret and guilt. The sub-theme of resilience was prevalent throughout the two studies. The participants conveyed self-acceptance and a lack of self-pity as they each described how they managed, with persistence and determination, a lifetime of mental health issues, relationship and employment difficulties, and feelings of difference and failure. This suggests that acceptance-based therapies would be particularly beneficial for autistic adults.
Throughout life, there were concerns regarding insomnia or other sleep disorders, allergies, obesity, and migraine. Research and clinical experience indicate that menopause can be a difficult time for autistic women with an increase in autistic characteristics and more meltdowns, as illustrated in this quote: “During menopause, I was on 3 meltdowns per week” (Groenman et al, 2022; Karavidas & DeVisser, 2022; Mosely et al., 2020). Several participants in the focus group described how menopause increased their sensory sensitivity and was associated with new aversive sensory experiences. There is also a decline in executive functioning ability.
Recent research has confirmed an association between autism and early-onset dementia (Vivanti et al., 2021). The five-year prevalence of dementia in autistic adults aged 30-64 years was 4.04%, and only 0.97% in the non-autistic population. Autism may also be associated with Parkinson’s disease (Croen et al., 2015; Geurts et al., 2022), with between 17% and 33% screening positive. Common features include rigidity, stiffness, slowness, getting ‘stuck’ and tremors.
Factors contributing to a positive outcome
Our clinical experience and the two main studies described in this blog suggest that factors contributing to a positive outcome tend to be personal and interpersonal. Personal factors are increased self-acceptance and self-compassion, such as the comment, “I can look back now and cut myself a bit of slack”, celebrating the qualities associated with autism and a positive outlook. This includes having a sense of humour, positive reframing, and less self-blame, such as the comment, “I used to think I could make people like me if I tried hard enough. Therefore, if they didn’t like me, it was my fault”.
Another factor was discovering new enjoyable activities such as volunteer work and community groups and feeling there was less pressure to conform to society’s standards and focus on activities that brought pleasure and a sense of fulfilment. For many, life experience engendered resilience and, in later life, increased self-awareness and acceptance. Interpersonal factors include connecting with other autistic adults and the development of autistic friendships and a sense of belonging.
As explained by Ommensen et al., relative to earlier life stages, later life in the typically developing population generally brings emotional stability and improved emotional well-being, reductions in mental health problems, contentment, and a positive outlook. It seems that this pattern is also reflected in the developmental trajectory of autistic adults. There is the potential for positive change in the mature years.
Where to from here?
On the 13th January, 2024, we will be conducting a live in-person and webcast from London on Autistic Girls & Women. The presentation describes the strengths and abilities commonly experienced by autistic females, as well as key challenges, including self-understanding, developing an authentic self, navigating school and 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 year of experience in autism. We discuss autism in females across the lifespan.
Bradley et al. (2021) Autism in Adulthood 3 320-329
Croen et al (2015) autism 19 814-823
Garnett and Attwood (2022) Autism Working: A Seven-Stage Plan to Thriving at Work London, Jessica Kingsley Publishers
Groenman et al (2022) Autism, 1563-1572.
Geurts et al (2022) Autism 26, 217-229
Karavidas and DeVisser (2022) Journal of Autism and Developmental Disorders 52, 1143-1155.
Mason et al. (2018). Autism Research 11, 1138-1147
McConachie et al. 2020 Autism in Adulthood 2 4-12
Mosely, Druce and Turner-Cobb (2020). Autism 24 1423-1437
Ommensen, B. University of Queensland PhD thesis recently submitted.
Vivanti et al (2021) Autism Research 1-11
Wake, Endlich and Lagos (2021). Older Autistic Adults in Their Own Words: The Lost Generation AAPC Publishing, Shawnee, KS.
Wylie et al. (2016) The Nine Degrees of Autism London, Routledge