Aging Well ontheAutism Spectrum

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Journal of Autism and Developmental Disorders 
https://doi.org/10.1007/s10803-018-3596-8
ORIGINAL PAPER
Aging Well on the Autism Spectrum: An Examination of the Dominant 
Model of Successful Aging
Ye In Hwang1,2 · Kitty‑Rose Foley1,2 · Julian N. Trollor1,2
 
© Springer Science+Business Media, LLC, part of Springer Nature 2018
Abstract
There is a gap in our knowledge of aging with autism. The present study examined the applicability of the popular gerontology 
concept of “aging well” to autistic adults. Using survey data, a model of “aging well” was operationalised and applied to 92 
autistic adults and 60 controls. A very small proportion (3.3%) of autistic adults were found to be aging well. Significantly 
less autistic adults were “maintaining physical and cognitive functioning” and “actively engaging with life” in comparison 
to controls. Whilst important differences in health and functioning status were found, the current dominant model of “aging 
well” is limited for examining autistic individuals. Suggested adjustments include development of a broader, more flexible 
and strengths -based model.
Keywords Adulthood · Aging · Aging well · Successful aging · Theory · Medical comorbidities · Physical functioning · 
Cognitive functioning · Activities of daily living · Social participation · Employment · Education
Introduction
‘Successful aging’, or ‘aging well’ (AW) has become a pop-
ular concept in gerontology since its promulgation by Rowe 
and Kahn (1987, 1997). The authors stipulate three criteria 
for AW: (i) avoiding disease and disability, (ii) maintain-
ing high physical and cognitive functioning and (iii) active 
engagement with life (Fig. 1). In the face of recent demo-
graphic trends of population aging and longevity, AW is an 
understandably attractive concept to both individuals and 
wider society. It has attracted sustained attention within 
aging research (Wahl et al. 2016), and hundreds of articles 
have offered critique of Rowe and Kahn’s model (Martinson 
and Berridge 2014). Whilst some have suggested alternative 
models, others have instead made suggestions for conceptual 
refinement and modification (Stowe and Cooney 2014) to 
improve the translational capacity of the model.
In order for the model to be of relevance for the aging of 
all adults, it must be flexible enough to be applied to diverse 
populations, including the significant minority of adults on 
the autism spectrum. However, autistic adults are largely 
excluded from the model because in their original conceptu-
alisation, those with disabilities were automatically classed 
as ‘unsuccessful agers’ (Rowe and Kahn 1987). Authors 
have discussed this exclusion of disabled individuals from 
AW as a major limitation of the model (Minkler and Fadem 
2002).
The characteristics and diagnosis of ASD persist into 
adulthood (Levy and Perry 2011) and the estimated preva-
lence of autism in adulthood is comparable to children, at 
approximately 1.1% of the population (Brugha et al. 2016). 
There are no available statistics of the prevalence of autism 
in Australian adults, though the Australian Bureau of Sta-
tistics reported a rate of .7% for the population overall in 
2015 (Australian Bureau of Statistics 2017). Adults on the 
spectrum experience unique and persistent support needs 
and challenges as they get older (Perkins and Berkman 
2012). Despite this, there is a noticeable gap in the avail-
able research and support for adults on the spectrum over 
the age of 25 (Stuart Hamilton and Morgan 2011). Numer-
ous researchers and organisations have acknowledged the 
pressing need for research focusing on autism in adulthood 
(Bennett 2016; Cusack et al. 2016; Perkins and Berkman 
 * Ye In Hwang 
 jane.hwang@student.unsw.edu.au
1 Department of Developmental Disability Neuropsychiatry, 
School of Psychiatry, UNSW, 30 Botany Street Randwick, 
Sydney, NSW 2031, Australia
2 Cooperative Research Centre for Living with Autism (Autism 
CRC), Long Pocket, Brisbane, QLD, Australia
http://crossmark.crossref.org/dialog/?doi=10.1007/s10803-018-3596-8&domain=pdf
 Journal of Autism and Developmental Disorders
1 3
2012; Wright et al. 2016). The topic has also been addressed 
in recent publications in journals of gerontology and geri-
atrics, where authors have called for attention to the grow-
ing population of autistic adults for whom we have very 
little available evidence, the emergent public health crisis 
this poses and implications for policy, program and service 
implementation (Bennett 2015; Hategan et al. 2017; Wright 
and Wadsworth 2015). There is a need for more collabora-
tion between aging and disability researchers in order to pro-
duce the most relevant and effective information with which 
to service present and future populations (Freedman 2014).
In the gerontology literature, researchers have opera-
tionalised Rowe and Kahn’s model to examine the propor-
tion of non-autistic adults who may be deemed to be AW. 
The reported proportion of adults who are AW has varied 
depending on the measures used and characteristics of 
the sample, with figures between 10 and 20% commonly 
reported in recent studies (Bosnes et al. 2016; Feng et al. 
2014; McLaughlin et al. 2010). To the best of our knowledge 
there have been no investigations of Rowe and Kahn’s model 
to examine AW in autistic adults.
According to extant evidence, autistic adults may start 
from a position of potential disadvantage regarding the fac-
tors of Rowe and Kahn model. Whilst a high rate and number 
of medical comorbidities are documented for autistic adults 
(Jones et al. 2015), studies comparing rates of disease with 
the general population are scarce and somewhat conflicting. 
Higher rates of diabetes and cardiovascular disease in autistic 
adults have been reported by a larger study including adults 
over 18 (Croen et al. 2015), whilst no differences were found 
in another smaller study of adults over 40 (Fortuna et al. 2015). 
Both studies report comparable rates of osteoporosis, cancer 
and lung disease between autistic adults and controls. Gastro-
intestinal disorders are also consistently reported to be higher 
in those on the spectrum (Cashin et al. 2016). Lifestyle-related 
factors that increase the risk of chronic medical conditions 
such as obesity and hypertension are higher in autistic adults 
than the general population, whilst smoking and alcohol use 
are lower (Croen et al. 2015; Tyler et al. 2011).
The evidence regarding daily functioning impairments for 
those on the spectrum is more consistent. Individuals on the 
autism spectrum reportedly experience impaired function-
ing in daily living skills and though some improvements are 
documented over time, these effects plateau during their 30 s 
(Smith et al. 2012). Independence in daily activities is also 
lower for autistic individuals over 40 than age-matched con-
trols (Fortuna et al. 2015). Evidence regarding age-related 
changes in cognitive functioning in autistic adults is scarce. 
However, executive functioning deficits are consistently 
documented, both for those with and without comorbid intel-
lectual disability and impairments appear to worsen with age 
(Lever et al. 2015; Rosenthal et al. 2013). Labour force par-
ticipation for those on the spectrum is low, with studies from 
the United Kingdom and United States reporting that only 
13 and 12% of autistic adults are in competitive employment 
respectively (Howlin et al. 2004; Wehman et al. 2016). Diffi-
culties in social interaction and communication and sensory 
sensitivities present in autistic adults are also likely to create 
significant barriers to social participation and leisure.
At face value, Rowe and Kahn’s model has limited cur-
rency for autistic adults and for other populations that 
experience similar limitations. However, it does allow for 
examination of some key health and functioning indicators 
in adult samples. Common suggestions to improve the model 
generally have includedthe incorporation of a broader range 
of factors, considering subjective perspectives and the need 
to eliminate ‘ableism’ implied by the model (Martinson and 
Berridge 2014). A formal investigation of the existing model 
in its applicability to autistic adults may allow for an explo-
ration of the health and functioning status of autistic adults 
and importantly provide insight to the development of a new, 
more inclusive model.
The current study aimed to investigate the proportion of 
autistic adults involved in a longitudinal study of autistic 
adults in Australia, who are AW according to Rowe and 
Kahn’s (1987, 1997) model, compared to adults from the 
general population. In doing so, it aimed to explore the 
applicability of Rowe and Kahn’s model to autistic adults. 
It was hypothesised that the proportion of adults who are 
AW would be lower for autistic adults than in the general 
population for the three factors of the model as well as for 
AW overall.
Methods
Participants and Recruitment
Participants included autistic adults and non-autistic con-
trols who participated in the first wave of the Australian 
AVOIDING DISEASE 
AND DISABILITY
HIGH PHYSICAL 
AND 
COGNITIVE 
FUNCTION
ENGAGEMENT 
WITH LIFE
SUCCESSFUL 
AGING
Fig. 1 Illustration of Rowe and Kahn’s (1997) original conceptualisa-
tion of ‘successful aging’
Journal of Autism and Developmental Disorders 
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Longitudinal Study of Adults with Autism (ALSAA). 
The ALSAA is a national, comprehensive questionnaire 
that aims to describe the health and wellbeing profile of 
autistic adults in Australia. Inclusion criteria for autistic 
adults and controls in the present investigation included 
being 40 years old or older, living in Australia and Eng-
lish proficiency. The sample thus included a number of 
adults that are younger than traditionally associated with 
studies of aging. This allowed for the minimisation of 
survivor bias, which is particularly important for autistic 
individuals who experience decreased life expectancy and 
premature mortality in comparison to the general popula-
tion (Hirvikoski et al. 2015; Perkins and Berkman 2012). 
Lowering the minimum age cut-off allowed for a more 
robust examination of health and wellbeing for autistic 
adults in middle-age and beyond, for whom there is a 
scarcity of available research evidence.
For autistic adults, only those with a formal diagno-
sis were included. Diagnosis was self-reported by par-
ticipants, who reported the year, name and type of pro-
fessional involved in the diagnosis. Participants were 
recruited by dissemination of promotional materials to 
autism-specific organisations, aged-care and disability 
service providers, universities, medical centres and rel-
evant online communities.
Participants were either sent an email containing their 
personal link to an online version of the questionnaire, or 
mailed a paper copy of the questionnaire with a reply-paid 
envelope addressed back to the research team. Information 
and consent forms were included at the beginning of the 
online survey with checkboxes for participants to select. 
Information and consent forms were also mailed with the 
paper questionnaires, and it was specified that completing 
and returning the questionnaire implied informed consent. 
Progress on the online questionnaire could be saved and 
re-accessed via the same link and submitted when com-
plete. Data from the online questionnaires were stored on 
a password protected account in Qualtrics. Data from the 
returned paper questionnaires were entered by members 
of the research team into Qualtrics.
For a subset of the autistic adult group, the question-
naire was completed by a proxy (a relative or partner) 
on behalf of the adult, whilst all controls self-reported. 
Completion of the self-report or proxy version was deter-
mined by: the adult’s choice to self-report and a check-
list for Capacity to Provide Consent provided during the 
screening process. This checklist was adapted from the 
original version used in the Study of Aging in Intellectual 
Disability (SAGE-ID). Ethical approval for the ALSAA 
was obtained from the University of New South Wales 
Human Research Ethics Committee (approval number 
HR:15001).
Measures
In addition to basic demographic information, data regard-
ing presence of intellectual disability, type of diagnosis 
and score on the Autism-spectrum Quotient-Short (AQ-28) 
(Baron-Cohen et al. 2001; Hoekstra et al. 2011) was taken 
from the ALSAA. The AQ-28 (Hoekstra et al. 2011) is a 
self-report measure of autistic traits. Though not a diagnostic 
tool, a score above 65 (possible score range 28–112) is con-
sidered indicative of being on the autism spectrum (Hoekstra 
et al. 2011). Participants were also asked if they had any 
current diagnoses of depression or anxiety.
The three-factor model by Rowe and Kahn (1997) was 
operationalised for use in the present study. The ALSAA 
includes a broad range of health and wellbeing measures 
spanning many domains such as autism-specific topics, men-
tal and physical health, day activities, quality of life, health 
service use, social supports and daily functioning. Data from 
the ALSAA that were relevant to Rowe and Kahn’s model 
were selected for analysis. Refer to Table 1 for a summary 
of the measures used in the present study. Criteria for each 
of the factors were determined based on Rowe and Kahn’s 
original conceptual papers (Rowe and Kahn 1987, 1997), 
international health guidelines and past studies that have 
operationalised the model for use with the general popula-
tion (Bosnes et al. 2016; Brown and Bond 2016; Strawbridge 
et al. 2002).
Avoidance of Disease and Disability
In order to satisfy this criteria, participants needed to report 
no history of seven common diseases in adults: myocardial 
infarction (heart attack), stroke, diabetes, cancer, osteoporo-
sis, chronic lung disease or hypertension. Participants also 
needed to report being a non-smoker, fall under the lifetime 
risky drinking threshold defined by the National Health and 
Medical Research Council of Australia (up to two standard 
drinks on any day for the past 12 months) and report a BMI 
lower than 30.
Physical and Mental Functioning
To satisfy criteria, participants were required to be inde-
pendent in eight daily tasks: toileting, making his/her own 
bed, light house cleaning, washing/bathing, grooming, dress-
ing and undressing, drinking from a cup and eating from a 
plate. These items were taken from the Waisman Activities 
of Daily Living Scale adapted for adults with developmental 
disabilities (Maenner et al. 2013). For physical functioning, 
participants also needed to report either no or only mild diffi-
culty in walking long distances and little or no limitations in 
climbing several flights of stairs. For cognitive functioning, 
participants needed to report no difficulty in concentrating 
 Journal of Autism and Developmental Disorders
1 3
on something for 10 min and in learning a new task. These 
items were selected from participants’ responses on the 
Short Form Health Survey (SF-12) (Khanna et al. 2015) 
and the World Health Organization Disability Assessment 
Schedule 2.0 (Üstün et al. 2010).
Active Engagement with Life
Participants were required to satisfy two criteria. The first 
was having at least monthly contact with family and friends. 
The second was being engaged in at least one of the follow-
ing day activities: formal employment, volunteering, educa-
tion, or caring for someone.
Statistical Analyses
STATA 14 (StataCorp 2015) was used for statistical analy-
sis. Descriptive statistics were used to explore the propor-
tion of autistic adults and controls who met each factor of 
the Rowe and Kahn model. Participants were dichotomously 
classed as either AW or not AW for each of the factors of 
the model and for the overall model. Proportions of autistic 
adults and controls meeting different combinations of fac-
tors were also explored. Threebinomial logistic regressions 
were used to explore the association between each factor of 
the Rowe and Kahn model and: being autistic, age, gender, 
marital status, socioeconomic status, level of education and 
AQ score for the whole sample.
Results
Participant Characteristics
The initial sample included 115 autistic adults (109 self-
report and 6 proxy report) and 77 controls. Of this sample, 
23 (20%) autistic adults and 17 (22%) controls had incom-
plete or missing data. Fisher’s exact tests revealed no asso-
ciation between missing observations and being autistic 
(p = .70), gender (p = .75), age (p = .79) or self-report versus 
Table 1 Operationalisation of Rowe and Kahn’s three-factor model of successful aging
All measures were included as part of the ALSAA questionnaire
a Questions that were included in the ALSAA but not sourced from a specific measure
Factor Sub-criteria Criterion Measure/source
Avoidance of disease and dis-
ability
Avoidance of disease No history of : myocardial infarc-
tion (heart attack), stroke, diabe-
tes, cancer, osteoporosis, chronic 
lung disease
ALSAAa
Avoidance of risk factors for 
disease and disability
Non-smoker
Less than two standard alcoholic 
drinks per day
Body Mass Index(Nicolaidis et al. 2013; Zerbo et al. 2015). Such issues will 
be important for the development of a re-conceptualisation 
of AW that adequately captures the health challenges facing 
autistic adults.
Significantly poorer performance on physical and cogni-
tive functioning indicators by the autistic group also echoes 
Table 3 Proportion of 
participants who satisfied each 
criteria of Rowe and Kahn’s 
model
ASD (n = 92) Controls (n = 60) p
Avoidance of disease and disability 21 (22.8) 12 (20.0) .680
 Disease (no history) 45 (48.9) 34 (56.7) .350
  Diabetes 83 (90.2) 56 (93.3)
  Cancer 78 (84.8) 51 (85.0)
  Osteoporosis 84 (91.3) 57 (95.0)
  Lung disease 61 (66.3) 45 (75.0)
  Cardiovascular 89 (96.7) 57 (95.0)
 Risk factors for disease/disability 41 (44.6) 18 (30.0) .072
  Non-risky alcohol consumption 73 (79.4) 44 (73.3)
  Non-smoker 80 (87.0) 45 (75.0)
  BMI (not obese) 64 (69.6) 40 (66.7)
  No hypertension 67 (72.8) 42 (70.0)
Physical and mental functioning 29 (31.5) 45 (75.0)in future work.
The ‘all or nothing’ approach appears to unduly restrict 
those who fail one criterion but do well in others. More flex-
ibility should be allowed by considering subgroups of adults 
who fulfil different combinations of criteria. This will offer 
more meaningful profiles of aging. Also, whilst cut-offs are 
useful when delineating subpopulations for investigation and 
comparison, cumulative scores on each factor which then 
accumulate to an overall indication of AW would allow for 
monitoring progress over time. Similarly, it would be useful 
to reconsider the factors of the models as resources, rather 
than outcomes, which help achieve AW and allowing com-
pensatory factors to work where others may be lacking. It is 
also important to consider that the resources and capacity 
to AW are not stable across individuals, contexts and time.
Conceptually, the focus should be shifted away from 
delaying or avoiding natural, age-related deterioration in 
functioning towards the achievement and maintenance of 
strengths and resources in adulthood. This is in line with 
positive discourses of aging which appreciate these strengths 
and resources available to adults in later life. Importantly, 
this is also complementary to the neurodiversity movement, 
advocates of which call for inclusion, equity and respect for 
all autistic individuals by reconceptualising autism as a dif-
ference with its unique strengths and attributes, rather than 
a deficit in need of fixing (Kapp et al. 2012). Importantly, 
this will stimulate the development of tools and programs 
that focus on helping each individual attain their highest 
achievable standard of health and wellbeing, regardless of 
their abilities and circumstances.
Future Work
Differences between those who are classified as AW accord-
ing to researcher-defined criteria such as the model by Rowe 
and Kahn and those who believe themselves to be AW has 
been well-established in literature for the general popula-
tion (Brown and Bond 2016; Strawbridge et al. 2002). In 
moving forward, it would be useful to explore whether this 
is true also for autistic adults. Reasons for such disparity 
may be revealed by means of qualitative investigations of 
the meaning of AW for this population. Very few qualita-
tive investigations of aging have been conducted with this 
population thus far. Those that have been conducted have 
uncovered factors that are not necessarily covered in exist-
ing models, such as mental health, life experiences and 
environmental-level factors as important aspects of getting 
older on the autism spectrum (Elichaoff 2015; Hwang et al. 
2017). Specific qualitative investigations of the meaning and 
experience of AW for autistic adults that are complemen-
tary to those previously conducted with adults in the general 
population will be able to provide useful insights for the 
development of an effective model of AW for autistic adults.
In addition to a general improvement of the model, it 
would also be useful to explore the role and impact of 
autism-specific aspects on AW. That is, whether and how 
being autistic, the associated symptoms and life experiences 
may contribute to the outcome of AW. For example, many 
autistic individuals experience a range of sensory sensitivi-
ties (Robertson and Simmons 2015a) and repetitive behav-
iours (Chowdhury et al. 2010) but the impact of these are 
poorly understood in adulthood. Qualitative studies suggest 
that they may affect daily functioning and participation 
(Robertson and Simmons 2015b) and further investigation 
may offer useful insights into an aspect of AW that is unique 
to those on the spectrum.
Conclusions
Rowe and Kahn’s popular model of aging, whilst useful for 
examining health and functional status, is limited in its abil-
ity to effectively and appropriately assess aging for those on 
the autism spectrum. The present findings provide the basis 
for future development and testing of a more inclusive and 
powerful model of AW. A necessary step forward would be 
to consolidate existing theoretical and empirical evidence 
to develop and test an expanded and more inclusive model 
of AW. In particular, AW should consider more environ-
mental, psychosocial and autism-specific factors, include 
both subjective and objective criteria and move away from 
a deficit-based model to one that considers strengths and 
resources, allowing for compensatory mechanisms that make 
AW achievable for all individuals.
Acknowledgments The authors also acknowledge the valuable contri-
bution of the Research Advisory Network and members of the Autism 
CRC Research Academy whose insight and recommendations shaped 
this work. We also gratefully acknowledge the cooperation and par-
ticipation of all participants on the autism spectrum and their carers 
involved in this study.
Author Contributions YIH was involved in formulating the research 
question, designing the study, ethics preparation, recruitment, data col-
lection, data analysis and writing the manuscript. K-RF was involved 
formulating the research question, designing the study, recruitment, 
data analysis and editing the manuscript. JT was involved in for-
mulating the research question, designing the study and editing the 
manuscript.
Funding This work was supported by the Cooperative Research Centre 
for Living with Autism (Autism CRC), established and supported under 
the Australian Government’s Cooperative Research Centres Program.
Journal of Autism and Developmental Disorders 
1 3
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	Aging Well on the Autism Spectrum: An Examination of the Dominant Model of Successful Aging
	Abstract
	Introduction
	Methods
	Participants and Recruitment
	Measures
	Avoidance of Disease and Disability
	Physical and Mental Functioning
	Active Engagement with Life
	Statistical Analyses
	Results
	Participant Characteristics
	Proportion of Adults Aging Well
	Correlates of Aging Well
	DiscussionLimitations
	Theoretical and Practical Implications
	Future Work
	Conclusions
	Acknowledgments 
	References