Autism over the age of 50

As clinicians, we have seen an increasing number of adults, and especially women, over the age of 50 seeking confirmation of autism in their developmental history and current profile of abilities. This has provided an opportunity to explore the ageing process associated with autism using a cross-sectional approach, that is the changing 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 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 blog.

Confirmation of autism later in life

Our clinical experience is that the discovery of autism later in life is perceived as a positive experience, with research confirming that nearly 80% of participants feel a sense of relief and being liberated, as illustrated in the following quotations from the Wake et al. (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 Wake et al. study felt relieved and better about themselves following confirmation of autism but distressed that they had lived such a great part of their lives without knowing they were autistic. They were unable to benefit during their childhood and adolescence from our current understanding of autism and the new range of acceptance and support programmes at school, home, work and in relationships. They have also not had access to psychological therapy specifically designed for autistic individuals to reduce feelings of anxiety and depression.

The overwhelming majority in the Wake et al. (2021) study 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, academically and socially. 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 autism confirmed earlier in life.

After the confirmation of autism in their senior 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 of confirmation of being autistic on mental health, as expressed by one research participant who said:

“My depression lifted without medication”.

Changing characteristics of autism

Tony convened a focus group of 27 autistic adults over the age of 50 to explore if the degree of expression of the diagnostic criteria for autism changed during the adult years. Participants were asked if, from their perspective, the specified diagnostic criteria for autism remained stable, increased, or reduced.

Section A of the DSM 5 diagnostic criteria for autism refers to difficulties with social-emotional reciprocity, reading body language and making and maintaining friendships and relationships. Around 60% of participants considered that these autistic characteristics increased, and only 17% considered that they reduced over time.

Section B refers to routines and rituals, interests and sensory sensitivity. The majority of participants (76%) considered that routines and rituals and sensory sensitivity were stable with no clear pattern for interests. It seems there was greater acceptance of sensory sensitivity and determination not to let the sensory pain inhibit their quality of life.

The comments of the participants were interesting in that although the signs of autism increased, coping strategies improved, as in the quotation:

“My coping skills are better so even though my symptoms may be worse, they may not seem worse”, and there was greater self-agency “I know what I am bad at so I avoid situations. I have more agency as an older person in that I can choose whether I expose myself to situations or not”.

Another participant observed that since finishing work, his stress levels have decreased, and therefore his autistic characteristics were less dominant, and he was perceived as a friendlier person.

Social abilities

Our clients have described having a gradual improvement in social abilities and number of friendships, which included having autistic friends after confirmation of their autism. There is a desire to connect with others intellectually rather than emotionally and, in later years, a desire to help other autistic adults (Wylie et al., 2016). However, socializing and maintaining friendships remains effortful throughout life and energy-draining.  However, most participants in the two research studies reported being less bothered by a perceived lack of friends than they were during earlier stages of life, and they gradually acquired socializing strategies: With life experiences, you learn the rules slowly, and you learn to compensate for what isn’t there by inherent nature.

Employment

Nearly 60% of the research participants in the Wake et al. (2021) study 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 & Attwood, 2022). The workbook is based on our clinical experience and the experiences of older autistic adults.

Relationships

A source of stress in later years was relationship difficulties, especially a perceived failure to meet the emotional needs and expectations of their partners.  

The Wake et al. (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 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.

Mental health

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 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 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

 “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.

Physical health

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 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 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.

References

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