Many who were diagnosed with autism late in life had grown up believing they were bad people

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Many over-50s who were diagnosed with autism late in life had grown up believing they were bad people, according to a new study published in the journal Health Psychology and Behavioural Medicine.

Researchers from Anglia Ruskin University interviewed nine adults about their experiences of being diagnosed with autism in their 50s. The participants were aged between 52 and 54.

As children, some participants recounted having no friends and being isolated from others, and as adults they could not understand why people treated them differently.

Several had been treated for anxiety and depression.

Participants also highlighted the lack of support available to adults with a new diagnosis.

It is thought to be the first study of its kind that examines the phenomenon of receiving a diagnosis exclusively in middle age.

It is thought to be the first study of its kind that examines the phenomenon of receiving a diagnosis exclusively in middle age.

Dr Steven Stagg, Senior Lecturer in Psychology at Anglia Ruskin University (ARU) and lead author of the study, said: “One aspect of the research I found heart-wrenching was that the participants had grown up believing they were bad people.

They referred to themselves as ‘alien’ and ‘non human’.

“The research also suggests that receiving a diagnosis in middle age can be positive.

The participants often described it as a eureka moment that brought relief into their lives.

It allowed them to understand why others had reacted negatively towards them.

“Clinicians and health workers need to be aware of the possible signs of autism.

Often people are diagnosed with depression, anxiety or other mental health conditions and the autism is missed.

More work also needs to be done to support older people after they receive a diagnosis.”


Autism Spectrum Disorder (ASD)1 has for many decades been known as a lifelong neurodevelopmental disorder, which may have profound effects on intellectual ability and psychological functioning, general ability, and life outcomes (Howlin et al., 2004Howlin et al., 2013Howlin et al., 2014).

However, autism research has to date largely neglected the life outcomes and trajectories for older adults diagnosed with the condition (Michael, 2016Mukaetova-Ladinska et al., 2012Smith et al., 2012). This has led to recent reports attempting to identify priorities for research on aging and ASD (e.g. Happé & Charlton, 2011Howlin et al., 2015Damiano et al., 2014).

Several other co-existing conditions, such as anxiety, depression, Attention Deficit Hyperactivity Disorder (ADHD) and Obsessive-Compulsive Disorder (OCD; Lever & Geurts, 2016) are associated with their own sets of psychological difficulties that can affect general wellbeing and autonomous living (Hofvander et al., 2009Kats et al., 2013).

All these factors converge on several key areas that point to the need for better understanding of the experiences of autistic individuals as they grow older. Moreover, long-term mental health difficulties, such as depression, are known to be associated with cognitive difficulties in typical aging (McClintock et al., 2010), and with increased risk of neurocognitive disorders (i.e. dementia; Bauman, 2010) in the general population (Evans & Mottram, 2000).

The findings from many studies in the typical aging literature suggest that cognitive aging can be observed after 50 years of age with declines observed in processing speed (Salthouse, 1996); attention (McCabe et al., 2010), metacognitive ability (Mäntylä et al., 2010), executive functions (Craik & Bialystok, 2006Friedman & Miyake, 2017), memory (Craik & Byrd, 1982Rabbitt, 2016) and general intellectual ability (Salthouse, 2004Anderson & Craik, 2017; and see Hedden & Gabrieli, 2004 for review of lifespan changes and stability).

More broadly, during the course of aging, changes in the domains of memory, executive function, and fluid intelligence affect psychological functioning and well-being.

This includes functional skills for independent daily living and life management, including the ability to perform more demanding activities such as employment, planning skills, spatial orientation and navigation, taking one’s medication and even remembering a doctor’s appointment or someone’s name (McDaniel & Einstein, 2000).

In this respect, age-related cognitive decline can have far-reaching and devastating effects on an individual’s general functioning and independence, leading to social isolation and poorer quality of life (Crook et al., 1986Hedden & Gabrieli, 2004Salthouse et al., 2003Salthouse, 2004Woods et al., 2015).

Further, neurocognitive research involving the study of the interaction between the changes in the nervous system and changes in brain regions may provide clues to the cognitive mechanisms that underlie how individuals learn and process information.

For instance, the impairments observed in cognitive functioning within certain clinical groups are similar to those observed in persons with brain trauma or developmental disorders (Cappelletti et al., 2014Dempster, 1992). These similarities indicate that particular brain regions are be implicated in learning and memory across the lifespan.

For instance, frontal brain regions (associated with executive function) and the hippocampus and related structures of the medial temporal lobe (associated with memory) have been shown to decline in volume and functional connectivity with increasing age (e.g. Raz et al., 2005Craik & Rose, 2012aCraik & Rose, 2012bFerreira et al., 2016) – a picture that corresponds to the cognitive and brain profiles of patients with amnestic and dementia pathologies (Hedden & Gabrieli, 2004).

For individuals on the autism spectrum, a similar profile has been identified, in relation to atypical functional connectivity between associated brain regions at various developmental stages (e.g. Boucher et al., 2012Just et al., 2012), including middle-older age (40–65 years; Braden et al., 2015).

In turn, these brain differences in autistic individuals are accompanied by selective cognitive difficulties, such as executive function and memory (Boucher et al., 2012Braden et al., 2015Hill, 2004; but see Mottron & Burack, 2001).

The parallels that can be drawn between cognitive difficulties in younger autistic individuals and the similar profile of difficulties seen in typical age-related cognitive decline, suggests that autistic individuals may present as prematurely cognitively old (Bowler, 2007).

If true, then these findings highlight important considerations of how growing older might affect the cognitive abilities and functioning of older autistic adults and whether early developmental profiles present an increased risk of cognitive decline associated with dementia and co-existing mental health conditions (Braden et al., 2015Croen et al., 2015; but see Oberman & Pascual-Leone, 2014).

The risk of onset of dementia, including Alzheimer’s disease which is the most common (62%) cause of dementia, increases dramatically with older age (Lewis et al., 2014Prince et al., 2014).

An estimated 2% of adults aged 65–69 years have dementia (1.8% female; 1.5% male), increasing to 25% (men) to 33% (women) by age 85 years or older (Stuart-Hamilton, 2006, p. 197; Lewis et al., 2014Prince et al., 2014) – some research suggests even higher risks for Alzheimer’s disease in almost half of all adults in older age (85+ years; Bishop et al., 2010).

The various forms of dementia are associated with fronto-temporal lobe dysfunction – the domains associated with executive and memory functions (Bishop et al., 2010) – and are thought to exacerbate the effect of age-related cognitive decline and poor quality of life (Knapp et al., 2007Lewis et al., 2014).

In ASD, little is known of the risk of dementia in older age. One study (Croen et al., 2015) reported prevalence rates of 1.9% (men) to 3.2% (women), for dementia in autistic adults. Another study has speculated that cognitive “hyperplasticity” (Oberman & Pascual-Leone, 2014, p.341), which could explain the cognitive and behavioural profiles seen in early development (Oberman & Pascual-Leone, 2008), may offer protection from dementia in older age when plasticity is typically reduced. However, the possible factors associated with dementia-related protection or risk in ASD are under-researched and still poorly understood (Wright et al., 2016).

Consequently, because very little research has included older autistic adults, much less is known about how the process of aging affects the quality of life of autistic individuals and the need for long-term care (Happé & Charlton, 2011Howlin et al., 2015Mukaetova-Ladinska et al., 2012).

We aimed to address the gap in knowledge by bringing together, for the first time, an international consortium of researchers, professionals and autistic adults to discuss the issues related to aging and autism, with implications for future research and clinical applications.

Based on ongoing work concerning the cognitive changes associated with aging in ASD and their impact on quality of life (e.g., Braden et al., 2017Lever & Geurts, 2015Powell et al., 2017Roestorf & Bowler, 2016Roestorf, Howlin et al., 2018van Heijst & Geurts, 2015), a series of Special Interest Group (SIG) meetings was held at the 2016 and 2017 annual meetings for the International Society for Autism Research (INSAR).

These were co-led by the first and last author of the present article. The SIG objectives focused on three priorities for Aging and ASD derived from recent reports (e.g. “Getting On Policy Report”, National Autistic Society, 2008Pellicano, Dinsmore, & Charman, 2014aPellicano, Dinsmore, & Charman, 2014b; “Autistica’s Research Strategy 2015-20″, Autistica, 2014), which were:

  • (1)Later life autistic traits and diagnosis of ASD: for earlier referral and/or interventions, better diagnostic tools, and post-diagnostic support of autistic adults;
  • (2)Cognitive aging in ASD: for a better understanding of the age-related cognitive changes associated with aging in ASD and potential risk factors for cognitive declines associated with dementia;
  • (3)Treatment and care of older adults: with respect to general wellbeing, physical, and mental health across the autistic adult’s lifespan.

These priorities were provided as starter points for a more in-depth discussion to determine how the autism research community can develop more collaborative research in order to maximise validity and generalisability of findings and conclusions.

Delegates in the first SIG meeting (N = 53) included representatives from nine countries (UK, Netherlands, Italy, Norway, Denmark, USA, Canada, Australia, Taiwan).

In that meeting, which was held at INSAR Baltimore, USA in May 2016, delegates were asked to discuss the above three priorities in small groups and to identify and report back on two key points related to them. Delegates elected to participate in one of the three discussion groups related to the above themes, based on their specific area of research interest.

The discussion points for each priority were: (a) to identify the primary question to be addressed, potentially in a collaborative research effort; (b) to discuss one single challenge that needed to be overcome when studying this specific age group and provide a potential solution to this challenge. The main outcomes from these discussion groups are reported below.

Global issues about aging and ASD

An issue that transcended the priority areas was the question of how to define ‘aging’ when referring to ASD. Whilst it was acknowledged that aging is a broad concept that spans developmental issues relating to the transition from child to adulthood to considerations of care and cognitive change in individuals older than 65 years, it was also agreed that research on aging in autism should focus on individuals over 50 years of age.

The consensus was that this relatively arbitrary boundary is appropriate, especially as autism is associated with premature death in some cases (mean age 54 years; Hirvikoski et al., 2016) which may be accelerated by a wide range of co-existing medical conditions (Croen et al., 2015Zerbo et al., 2018). Thus, recent research has highlighted greater co-occurring health conditions and mental health needs in ASD compared to the general population (Hirvikoski et al., 2016Fortuna et al., 2016Happé et al., 2016; and see Lever & Geurts, 2016). Moreover, relatively few have access to appropriate services in adulthood and across their lifespan (Wright et al., 2016).

The co-occurrence of one or more physical or mental health conditions is reported in at least 50–84% of autistic individuals (Hirvikoski et al., 2016Hofvander et al., 2009Lever & Geurts, 2016) but little is known about the health and social support services available for older autistic adults who may need continued support related to autistic traits, co-occurring mental health difficulties or daily living skills (Fortuna et al., 2016Hirvikoski et al., 2016Nicolaidis et al., 2014Seltzer et al., 2004; and see Wright et al., 2016).

The cumulative effect of long-term psychiatric co-existing conditions on cognitive functions and quality of life is largely unknown (Howlin & Moss, 2012Howlin et al., 2015Kats et al., 2013). In addition, the use of pharmacological treatments for co-existing conditions may further affect cognitive difficulties, such as memory (Joss et al., 2003).

These factors pose particular challenges for autistic individuals as they grow older and may be exacerbated in the case of those individuals who are unable to live independently, since support from family members is likely to be reduced as parent caregivers themselves approach old age and end of life (Howlin et al., 2015).

The implications of these factors are that many autistic adults will continue to require social care support across the lifespan (Parr, 2016D’Astous et al., 2016Howlin et al., 2013).

Moreover, there is a growing awareness of the risk factors associated with multiple co-occurring complex health conditions and reduced life expectancy in ASD, with potentially greater risks for individuals with impaired cognitive ability, including those with intellectual disabilities (ID) and epilepsy (Hirvikoski et al., 2016Mouridsen et al., 2008).

Consequently, as co-existing ID is an important factor in the context of premature death (Hirvikoski et al., 2016), future discussions are needed to determine how this might impact on the suggested old age boundary for aging and autism research.

Topic (1): Late life autistic traits and diagnosis of ASD

Key questions

Anecdotes from autistic self-advocates and practitioners confirmed that receiving a diagnosis of ASD in later life was a life changing event.

Clinicians face multiple challenges in identifying the clinical features of autism in older adults, especially in the ways these may differ from the symptoms shown by a younger autistic individual and across a range of abilities. This can result in undiagnosed older adults failing to be identified by social or healthcare services (Brugha et al., 2011Wright et al., 2016). The key question that emerged from this discussion topic was: ‘What does ASD look like in older individuals?

This led to a secondary question: ‘What questions should be asked to obtain appropriate background information about medical and developmental histories in older autistic adults in order to reach a reliable diagnosis?‘.

Challenges to addressing key question(s) and potential solutions

A major issue associated with research on aging and autism is the participation of the full spectrum of older autistic individuals. Some individuals may be unable to take part in research because of limited verbal or cognitive ability.

Thus, a collaborative effort is needed by aging and autism researchers to ensure that individuals with limited verbal skills can be included in related research, and to adequately address the research priorities of autistic adults, their families and partners (Autistica, 2014Pellicano, Dinsmore, & Charman, 2014aPellicano, Dinsmore, & Charman, 2014bWarner et al., 2018; and see Autistica, 2018). In others, social isolation may result in their failing to be aware of requests for research participation; still others may have been undiagnosed or misdiagnosed in earlier life and therefore never have received an ASD diagnosis or may not present themselves as autistic.

This raises further questions about the factors that prevent older adults from receiving a diagnosis. These may include ‘masking’ of symptoms, which seems particularly prevalent in women (Lai et al., 2015); the degree of co-existing conditions and autism-related symptoms, which may fall under the threshold of some diagnostic methods (Happé & Charlton, 2011Roestorf, Gaigg, Williams & Bowler, 2018) and differences or strengths in cognitive abilities, educational attainment and social-cognitive function (2014, Howlin et al., 2013) that may enable or inhibit individuals from participation in research (Pellicano, Dinsmore, & Charman, 2014aPellicano, Dinsmore, & Charman, 2014b).

SIG delegates also recommended that healthcare professionals need to be better informed of the age-related conditions and cognitive changes that can occur at various life stages, and how these changes may specifically affect older autistic adults.

Topic (2): Cognitive aging, decline, and dementia risk

Key questions to ask

The discussion centred around how researchers and clinicians could reach consensus on the cognitive assessment measures appropriate for older autistic adults, given wide differences in verbal and intellectual ability across the autism spectrum. The primary question that emerged from this discussion topic was: ‘How do we define the core assessments of basic cognitive function, that are appropriate for autistic individuals across the spectrum of ability and across the lifespan?’ This led to a second question: ‘How do these measures need to be adapted for reliable assessments that are age-appropriate, ability-specific and gender-relevant?’.

The question of cultural relevance was raised in relation to race/ethnicity and how future assessments are adapted to culturally specific requirements. Regarding cultural diversity, it was suggested that shared insights from the international consortium of researchers may to some extent facilitate this knowledge. However, more work is needed to understand the scope of implications for the collection of sensitive personal information in line with data protection regulations of each country or region.

Challenges to address key question(s) and potential solutions

The challenges to reaching a consensus on measurement include identifying measures that are sensitive to age-related changes and can characterise the diagnostic differences on the autism spectrum whilst remaining appropriate for use with autistic individuals with and without co-existing ID. A key consideration includes methods of identifying ‘missing groups’ of individuals with autism who do not self-refer for research and who may be lost in the community.

These may include, for example, individuals over the age of 21 years who are no longer in social or health-related services; those with co-existing ID; or older autistic individuals in residential care. Moreover, measures need to be robust to practice effects when tracking long-term outcomes in longitudinal research.

Issues were also raised around appropriate referral to healthcare services for individuals with multiple physical and mental health conditions, and the need to establish a better understanding of the long-term effects of pharmacological treatments on cognitive decline in later life.

It was recognised that insights from related work on the age-related cognitive changes in typical development (i.e. gerontology; Wright et al., 2016) and neuropsychological conditions (e.g. schizophrenia, Down’s syndrome, Parkinson’s; e.g. Coppus et al., 2006Croen et al., 2015Starkstein et al., 2015aStarkstein et al., 2015b) may provide clues for what could be expected of aging in ASD. Such research is also important for identifying the potential risk factors for age-related cognitive impairments in later life and markers of cognitive decline associated with dementia (Coppus et al., 2006Croen et al., 2015).

The consensus was that there was a need for future work to define a (small) set of cognitive measures based mainly on current studies that already focus on cognitive aging (Lever & Geurts, 2015Powell et al., 2017Roestorf & Bowler, 2016) and to draw from existing cognitive test sets in comparable fields of study (e.g. Charlton et al., 2009Salthouse, 2011).

Topic (3): Treatment and care of older adults

Key questions

The discussion raised several issues relating to treatment pathways, care plans and the measurement of outcomes and the effect of co-existing conditions and long-term medication use on life course outcomes. The primary question that emerged from this discussion topic was: ‘Which aspect(s) of physical and mental health intervention need to be addressed in ASD?’ and a related question: ‘What are the effects of psychopharmacology and overuse of medication in autistic adults as they grow older?’.

Challenges to address question(s) and potential solution(s)

The main challenges identified centred on the life expectancy of older autistic adults, increased risk of mental health problems and suicidality, and ASD-related co-existing conditions including epilepsy and ID which are related to cognitive and behavioural difficulties in adulthood (Howlin et al., 2014Totsika et al., 2010). These issues highlight the need for effective health care management across the lifespan and raise the importance of understanding health-related effects on cognitive decline and increased risk of dementia in later life (Croen et al., 2015; and see Howlin & Moss, 2012Michael, 2016). A suggested potential first step towards a solution was to make an inventory of all the interventions different countries have already successfully implemented so these can be adapted to fit local needs and health care systems.

Possible ways for the autism research community to address the issues raised in the SIG

Across the three discussion topics – later life diagnosis, cognitive function/decline in aging, and treatment and care of older adults, there was considerable overlap in the issues raised. Furthermore, two issues consistently featured as factors that are currently hindering the progress of research on aging and ASD. These issues are: (i) identification of the core questions and factors that need to be addressed on aging and ASD; and (ii) developing support for studies through collaboration and sharing of resources to achieve more effective research outcomes.

Delegates agreed that a centralised database would better facilitate collaborations between researchers, practitioners, and the autism community. Such a database might include information about research protocols, methodologies and recent research findings. A centralised resource could also facilitate an increase in research participation by making studies accessible to individuals across a range of abilities and locations. Such data pooling would need to comply with General Data Protection Regulations (GDPR; Information Commissioner’s Office, 2018).


Source:
Anglia Ruskin University
Media Contacts:
Jon Green – Anglia Ruskin University
Image Source:
The image is in the public domain.

Original Research: Open access
“Living with autism without knowing: receiving a diagnosis in later life”. Steven D. Stagg and Hannah Belcher.
Health Psychology and Behavioural Medicine doi:10.1080/21642850.2019.1684920.

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