By Professor Tony Attwood and Dr Michelle Garnett
Over the last decade we have seen an increasing number of mature adults seeking confirmation of autism in their developmental history and profile of abilities. This has provided an opportunity to explore ageing and autism using a cross sectional approach, that is the expression of autism within specific decades and a longitudinal approach by regularly seeing some autistic adults over several decades. Research has also recently been conducted on ageing and autism using semi-structured interviews. A study by Wake, Endlich and Lagos (2021) included 150 research participants with an age range from 50 to 80 years. Tony has been an associate advisor to a PhD study that used a detailed analysis of ten autistic adults aged from 53 to 74 years (Ommensen et al). In this blog we examine autism and ageing based on both research and our extensive clinical experience.
Autistic adults over the age of 50, colloquially known as the Baby Boomers, were unable to benefit during their childhood and adolescence from our current range of support programmes at school and home that improve social understanding and friendships skills, as well as develop a positive sense of self. They have also not had access in their early adult years to therapy specifically designed to reduce feelings of anxiety and depression in autistic adults and they missed out on the environmental and attitude adaptations that we now have to support autistic adults at work. It is interesting that despite a lack of understanding and support throughout their life, some mature autistic adults have achieved a successful and enjoyable quality of life and wellbeing that will be valuable information for those designing interventions and support for future generations.
Recognition of autism late in life
Our clinical experience is that recognition of autism later in life is a positive experience, with research confirming that nearly 80% of participants feeling a sense of relief and being liberated, as illustrated in the following quotations from the Wake, Endlich and Lagos (2021) study.
“I felt I didn’t have to blame myself any more for being me … at least not so much.”
“It was so nice to have a name for it! And it allowed me to join a support group and start learning more about myself, as well as being clearer about which aspects of being on the spectrum I could work on and which I would just have to live with.”
Most research participants in the study felt relieved and better about themselves following confirmation of being autistic but upset that they had lived such a great part of their lives without knowing. The overwhelming majority recognized they were different to their peers during early childhood (95%) but without knowing why. They were often intellectually able students but had miserable experiences at school. It seems that the greatest distress came from not just being different, but from not having words or concepts to express their autism or someone to confirm the pattern of autistic characteristics. All research participants regretted not having their autism confirmed earlier in life.
After the recognition of autism in their mature years, there were changes in terms of feeling better about themselves (67%) and making sense of who they are. There was a reduction in self-blame, restructuring their lives based on strengths and abilities and finding support communities. There was also less inclination to engage in camouflaging autism (Bradley et al 2021). There were also beneficial effects on mental health as expressed by one research participant who said: “My depression lifted without medication”.
Coping reactions over time
Attwood (2007) described two internalizing and two externalizing reactions to autism that can be recognised in childhood that can extend into the adult years. The two internalizing reactions can be depression and escape into imagination or academics. The two externalizing reactions are denial of being different and supressing autistic characteristics and creating a social mask (camouflaging). Wake, Endlich and Lagos (2021) found that these coping strategies were more common in adolescence and early adulthood, but gradually reduced in midlife. This was probably due to using other coping strategies such as self-acceptance and a positive perception of autism. There were also improvements in understanding social situations, less need for rigid routines and time alone and being bullied and teased less often. Our clinical experience confirms the change in coping reactions over time.
Our clients have described having a gradual improvement in social abilities and number of friendships, that included having autistic friends after confirmation of their autism. There is a desire to connect with others intellectually and in the later years, a desire to help other autistic adults. However, socializing remains effortful and energy draining and a lifelong problem.
Ommensen and colleagues found that four out of five autistic adults described experiencing an improvement in social abilities in their mature years, but for one in five, these abilities declined. We speculate that improvement of social abilities may have been due to autistic adults using cognitive rather than intuitive abilities to process social information. A characteristic of aging in later life is a reduced functioning of the frontal lobes which may explain their reported experience of a deterioration in social abilities.
Employment and relationships
Nearly 60% of the research participants in the Wake, Endlich and Lagos study (2021) indicated that autism had made employment difficult but 26% indicated that autism had helped in their chosen career. Our recent self-guided workbook Autism Working provides advice, strategies and activities to manage the difficulties that can arise at work for autistic adults (Garnett and Attwood 2022). We wrote the book with the knowledge that many autistic adults struggle to find and maintain work, despite having many qualities and abilities that are advantageous in the workplace.
A source of stress in the mature years was relationship difficulties, especially a perceived failure to meet the emotional needs of their partners. The Wake, Endlich and Lagos (2021) study found that 26% of participants described how they have never really been close to anyone. The study also found more diversity in sexual orientation for both genders than in the general population. This is consistent with our clinical experience.
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 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 wellbeing. 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 and be understood
- Being able to excel in what you love to do
- Space to pursue interests/hobbies
- Daily engagement with special 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
It is interesting to note that a sense of wellbeing and quality of life was associated with reduced aversive sensory experiences and being able to engage in a special interest. This is important information when supporting an autistic adult.
The study of Wake, Endlich and Lagos (2021) found that there was an overall improvement in the quality of life for autistic adults after age 50, both in terms of effective coping strategies and improved mental health.
Many research participants experienced mental health problems since their teenage years, but not understanding what they were going through at the time and not being able to effectively explain their thoughts and feelings to family and professionals. In the above study, over the age of 50, high levels of anxiety were reported by 74% of research participants and depression by 72%. In the same age range, suicidal thoughts were reported for 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, Endlich and Lagos (2021) there was a distrust and disdain for most forms of conventional treatment and health professionals, especially medical doctors. They felt they were not listened to or understood and unfairly judged and mis-represented, as illustrated in the following quotation. “They were not interested in me. They’re interested in the drugs they can sell”.
An aversion to drugs was a common theme. Some participants had been prescribed medication for anxiety or depression but found them either unhelpful or the side-effects off-putting. There was also the issue of compliance in taking the medication as illustrated in the following quotation: “She sent me off to see a psychiatrist and he told me … give me anti-depressants and I … said well, a. I don’t think I’m depressed, b. I’m still breastfeeding and c. you know, can we not talk about this? And he said if I wouldn’t take the antidepressants there was no point me seeing him. So that was the end of our visits. I didn’t take the antidepressants”.
Recovery from depression was slow and lengthy but the majority of 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.
Mindfulness, meditation, spiritual and physical activities, such as gardening, 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 to achieve a sense of peace and emotional stability without the negative side-effects of medication.
Some conventional cognitive techniques were successful, such as positive self-talk
“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 had developed a greater self-awareness and, ultimately, self-acceptance and self-forgiveness. 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 stoicism 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.
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” (Mosely, Druce and Turner-Cobb 2020). Throughout life there were concerns regarding insomnia or other sleep disorders, allergies and obesity.
There is ongoing research exploring whether there is an association between autism and early onset dementia (Vivanti et al 2021) and Parkinson’s disease (Croen et al 2015). Preliminary research indicates that there may be significantly increased rates of these two medical conditions in autistic adults.
Factors contributing to a positive outcome
Our clinical experience and research suggest that factors contributing to a positive outcome tend to be personal and interpersonal. Personal factors are self-acceptance and a lack of self-pity, 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 fulfillment. 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 wellbeing, 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?
Our online course, Diagnosis and Therapy for Autistic Adults focuses on assessing and confirming autism using a range of instruments based on research studies and our extensive clinical experience. The courses assists clinicians to recognise autism in a variety of presentations, to assess co-morbidity and differential diagnoses and reviews the range of screening instruments and standardised assessments or scales. The second component of the course takes the themes of this blog further, increasing the clinician’s knowledge of autism and how to modify therapy for a range of autistic clients.
Attwood T. (2007) The Complete Guide to Asperger’s Syndrome, London, Jessica Kingsley Publishers
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
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 to be 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.