Ageing, cognition and quality of life in autism spectrum disorder: cross-sectional and longitudinal studies

Few studies to date have included older autistic adults, meaning that lifespan outcomes for autistic adults are poorly understood. In this thesis, findings are presented from a four-year programme of research, which followed-up younger and older adults (aged 18-80 years) with a diagnosis of Autism Spectrum Disorder and comparison groups of younger and older typically ageing adults from the general population. The aim of this research was to understand how growing older affects the cognitive functioning, autistic traits, psychological well-being and quality of life of autistic adults. The work reported here extends the recent but sparse literature on autism and ageing and addresses some of the unanswered questions about the lifespan outcomes for autistic adults as they grow older. Is there a steeper risk of cognitive decline with ageing? Does ageing in autism mirror the trajectories of cognitive change seen in typical ageing? Does the cognitive profile of autistic adults stay the same as they grow older? Previous literature has largely neglected the lifespan outcomes of autistic adults in older age, especially concerning questions on the persistence of mental health difficulties across the adult lifespan, and the degree to which cognitive differences and behavioural difficulties associated with autistic traits affects the quality of life of autistic adults as they grow older. The work presented here involved cross-sectional (Study 1) and longitudinal (Study 2) studies. Here, matched groups of older and younger adults with and without a diagnosis of autism spectrum disorder (ASD) were compared at two time points, T1 and T2, approximately 2.5 years apart. Measures were taken of autistic traits, cognitive functions (intellectual ability, language, memory and EF), mental health (anxiety, depression) and quality of life at both time points. The results showed that, at T1, younger autistic adults demonstrated the patterning of cognitive difficulties that resembled older typically ageing adults. Older autistic adults showed a different profile of age-related cognitive abilities, which may be explained by cognitive resilience developed across the lifespan. Nonetheless, co-existing physical and mental health conditions presented difficulties for more than half the autistic adults and were associated with poorer quality of life and well-being across the lifespan. An exploration of longitudinal change from T1 to T2 revealed no age-related changes in the cognitive profiles of younger and older autistic adults. Nevertheless, mental health difficulties persisted, as did poor quality of life. Then, to better understand the specific factors associated with cognitive functioning in older age, Study 3 extended the above work to Prospective Memory (remembering to remember) – a cognitive process that is among the most sensitive to age-related changes in typical ageing. For the first time, prospective memory was explored in ageing and autism, and its relation to quality of life. Ecologically relevant assessments of prospective memory were carried out in laboratory and naturalistic settings, in six experimental tasks. These tasks were designed to test pro-social and self-relevant motivations in event- and time-based aspects of prospective memory, which differentially draw on executive resources and are known to present difficulties for older typically ageing adults. Older autistic adults performed as well as or better than younger autistic adults across the six tasks, showing no age-related difficulties. By contrast, the older typically ageing adults showed age-related difficulties compared to younger typical adults. These findings replicate the previous literature of prospective memory in typical ageing and extend the limited research of PM in ASD to provide, for the first time, an explanation of the cognitive mechanisms associated with prospective memory and their relation to quality of life. The programme of work just described directly addresses some of the key issues associated with ageing and ASD and identifies areas in which some autistic individuals may require supports across their lifespan

Self-guided mindfulness and cognitive behavioural practices reduce anxiety in autistic adults: A pilot 8-month waitlist-controlled trial of widely available online tools

Anxiety in autism is an important treatment target because of its consequences for quality of life and wellbeing. Growing evidence suggests that Cognitive Behaviour Therapies (CBT) and Mindfulness-Based Therapies (MBT) can ameliorate anxiety in autism but cost-effective delivery remains a challenge. This pilot randomized controlled trial examined whether online CBT and MBT self-help programmes could help reduce anxiety in 54 autistic adults who were randomly allocated to either an online CBT (n=16) or MBT (n=19) programme or a waitlist control group (WL; n=19). Primary outcome measures of anxiety, secondary outcome measures of broader wellbeing, and potential process of change variables were collected at baseline, after programme completion, and then 3 and 6 months post-completion. Baseline data confirmed that intolerance of uncertainty and emotional acceptance accounted for up to 61% of self-reported anxiety across all participants. The 23 participants who were retained in the active conditions (14 MBT, 9 CBT) showed significant decreases in anxiety that were maintained over 3, and to some extent also 6 months. Overall, results suggest that online self-help CBT and MBT tools may provide a cost-effective method for delivering mental health support to those autistic adults who can engage effectively with online support tools

Ageing and autism: A longitudinal follow-up study of mental health and quality of life in autistic adults

Background: Poor mental health is known to adversely affect functional abilities, social isolation, and quality of life (QoL). It is, therefore, crucial to consider the long-term impacts of mental health conditions as autistic adults grow older. Objectives: To explore, in a group of community-based autistic adults, the extent of: (i) autistic traits, co-occurring physical and mental health conditions; (ii) age-related differences in those conditions, and changes over time; and (iii) their impact on everyday living and QoL. Method: About Sixty-eight autistic adults (aged 19–80 years) participated in the first study (T1); 49 participants from T1 took part in a follow-up at T2 (mean retest interval 2.4 years). Standardised self-report measures of autistic traits, mental health, and QoL were completed at both time points. Results: Over two-thirds (71%) of autistic adult participants experienced at least one co-occurring condition, and over a third (37%) met the criteria for three or more co-occurring conditions. Mental and physical health difficulties were related to autistic traits and difficulties in everyday life and were consistent predictors of poor QoL at T1 and T2. Conclusion: Mental health difficulties in autism persisted into older age and did not improve over time. These findings have important implications for mental health provision for autistic adults in older age

"Older Adults with ASD: The Consequences of Aging." Insights from a series of special interest group meetings held at the International Society for Autism Research 2016-2017

A special interest group (SIG) entitled "Older Adults with ASD: The Consequences of Aging" was held at the International Society for Autism Research (INSAR) annual meetings in 2016 and 2017. The SIG and subsequent meetings brought together, for the first time, international delegates who were members of the autistic community, researchers, practitioners and service providers. Based on aging autism research that is already underway in UK, Europe, Australia and North America, discussions focussed on conceptualising the parameters of aging when referring to autism, and the measures that are appropriate to use with older adults when considering diagnostic assessment, cognitive factors and quality of life in older age. Thus, the aim of this SIG was to progress the research agenda on current and future directions for autism research in the context of aging. A global issue on how to define 'aging' when referring to ASD was at the forefront of discussions. The ‘aging’ concept can in principle refer to all developmental transitions. However, in this paper we focus on the cognitive and physical changes that take place from mid-life onwards. Accordingly, it was agreed that aging and ASD research should focus on adults over the age of 50 years, given the high rates of co-occurring physical and mental health concerns and increased risk of premature death in some individuals. Moreover, very little is known about the cognitive change, care needs and outcomes of autistic adults beyond this age. Discussions on the topics of diagnostic and cognitive assessments, and of quality of life and well-being were explored through shared knowledge about which measures are currently being used and which background questions should be asked to obtain comprehensive and informative developmental and medical histories. Accordingly, a survey was completed by SIG delegates who were representatives of international research groups across four continents, and who are currently conducting studies with older autistic adults. Considerable overlap was identified across different research groups in measures of both autism and quality of life, which pointed to combining data and shared learnings as the logical next step. Regarding the background questions that were asked, the different research groups covered similar topics but the groups differed in the way these questions were formulated when working with autistic adults across a range of cognitive abilities. It became clear that continued input from individuals on the autism spectrum is important to ensure that questionnaires used in ongoing and future are accessible and understandable for people across the whole autistic spectrum, including those with limited verbal abilities

“When my Autism Broke”: A Qualitative Study Spotlighting Autistic Voices on Menopause

Autistic women often struggle with the onset of menstruation, a key transition point in the female reproductive lifespan. Presently, there is no research investigating how autistic people navigate the menopausal transition, and whether it poses additional challenges in addition to those already faced by neurotypical women. As a preliminary participatory study in this area, we conducted an online focus group with seven autistic individuals, aged 49-63 years (median=64.5 years) and assigned female at birth, to explore the state of knowledge about the menopause in autism, difficulties the menopause might bring, support that might be needed, and what questions require scientific investigation. Thematic analysis of the discussion generated three themes: 1)Lack of knowledge and understanding; 2)Cracking the mask and adaptive functioning; and 3)Finding support. Themes suggested a lack of professional knowledge, understanding and communication about menopause for autistic people, and an absence of support. Menopause was discussed as heightening pre-existing and generating new cognitive, social, emotional and sensory difficulties. This study illustrates the need for greater focus of attention towards how autistic people cope with the major life transition of menopause

Social prescribing for autistic people: A framework for service provision [version 2; peer review: 2 approved]

Social Prescribing (SP) is the referral of patients to non-clinical services for practical, physical or psychosocial support. Recent guidelines from the National Health Service England mean that SP will become commonplace for people with complex healthcare needs. Autistic adults make up 1% of the population and commonly have co-existing physical and mental health conditions, therefore they are likely to be referred to SP services. As yet, no studies have examined the efficacy of SP for autistic adults. In this letter, we review the existing literature examining the efficacy of SP in the general population. We further examine the factors that should be considered when offering SP to autistic adults in order to optimise outcomes

Eye-tracking reveals absent repetition learning across the autism spectrum: Evidence from a passive viewing task

In the domain of memory, autism is characterised by difficulties in explicitly remembering the specific order of stimuli (e.g., Bowler et al., 2016; Poirier, et al., 2011), whereas implicit serial order memory appears to be preserved (Foti et al., 2015). This pattern is of considerable interest because serial order memory is known to play a critical role in children’s language development (Ullman, 2004). Currently, however, few paradigms exist that can effectively probe serial order memory across heterogeneous groups of children, including those who are minimally verbal. We present two experiments, involving 39 adults (20 ASD; 19 TD) and 130 children (86 ASD; 44TD), that address this issue using an eye-tracking paradigm, which simply required participants to ‘watch out for a bunny’ that appeared in repeating sequences of screen locations. The adults in experiment 1 all had normative IQs, whereas experiment 2 included children with and without substantial language and intellectual difficulties. In both experiments gaze latencies and anticipatory fixations to the bunny indicated reliable repetition learning effects in the TD but not the ASD groups. Importantly, we were able to acquire reliable data from around half of the children with significant language impairments in experiment 2, indicating that the paradigm can shed light on important learning processes in this underrepresented group. We discuss the implications of these findings for theories of memory in ASD as well as for the utility of eye-tracking technology to probe repetition learning effects in autism

Aging and autism: Do measures of autism symptoms, co-occurring mental health conditions, or quality of life differ between younger and older autistic adults?

Previous research has consistently indicated that autistic adults experience higher rates of co-occurring mental health difficulties and poorer quality of life (QoL) than their non-autistic peers. Little is known, however, about these aspects in older age or whether younger and older autistic adults experience similar patterns This cross-sectional study investigated potential age-related effects on autism symptoms, self-reported mental health and QoL in younger and older autistic adults (n=79, aged 19-71 years) compared to a non-autistic control group (n=57) matched for gender, age and IQ. Results showed that autistic adults had higher levels of self-reported autism symptoms and poorer QoL than controls. There were no significant age effects on autism symptoms or on most self-rated mental health symptoms. However, significantly more autistic adults in the younger versus older group scored above the clinical threshold for anxiety, somatoform disorders and eating disorders. Older autistic adults rated social QoL as significantly better than younger autistic adults; there was no significant age difference in the control group. Self-reported QoL was best predicted by self-ratings of severity of depressive symptoms in both groups. Further research is needed to track autism and co-occurring mental health symptomatology across the lifespan, so that service provision can be tailored accordingly