By Professor Tony Attwood and Dr. Michelle Garnett
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 two-part blog.
Confirmation of autism later in life
Our clinical experience is that the discovery of autism later in life is perceived as being positive, 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, greater acceptance by the community, or 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 recognise, affirm or validate 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. Most participants (76%) considered that their 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. 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.
Where to from here?
Our online courses cover many aspects of autism in different age groups and genders, including Diagnosis for Autistic Adults and Support & Therapy for Autistic Adults. We also offer live and webcast events.
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
