Autism Insights The challenge and promise of Autism spectrum Disorders in Adulthood and Aging

53 Pages·2013·1.01 MB·English

Autism Insights
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The challenge and promise of Autism spectrum Disorders in
Adulthood and Aging: A systematic Review of the Literature
(1990–2013)
Scott D. wright1, Denise e. Brooks2, valerie D’Astous3 and Temple Grandin4
1Associate Professor in the Gerontology Interdiscipinary Program, University of Utah. 2Professional Consultant in Aging
and Trauma Social worker, University of Utah Medical Center, Salt Lake City, UT. 3Graduate Candidate at King’s College,
London, UK. 4Professor, Department of Animal Sciences, Colorado State University, Fort Collins, CO.
Corresponding author email: [email protected]
Abstract: In the past five years, there has been a noticeable increase in the number of publications addressing the issues of autism
spectrum disorders (ASDs) in the domain of adulthood and aging. However this increase still represents an extremely small proportion
of the overall literature which is predominantly focused on autism in the childhood and adolescence stages of development. The pur-
pose of this paper is to present results from a systematic literature review covering the timeframe of 1990 to 2013 (including advance
online publications). Five data bases were queried at the intersection of ASD in the domain of adulthood and aging. Using “ASD” and
“adulthood and aging” as the two primary foci, we had several objectives: (1) to conduct an exhaustive and comprehensive review of
the literature; (2) to determine emergent sub-themes from the comprehensive review of publications; (3) to identify the top exemplar
articles per emergent theme; (4) to establish an emergent theme that had the greatest number of publications; the word to between
(5) to document three journals that most frequently publish articles exploring ASDs, adulthood and aging. This review is different
than previous reviews in that: (a) it emphasizes intergenerational factors; (b) it stresses multidisciplinary perspectives; (c) it is life-
course oriented; and (d) we review the promise and potential of neurodiversity and highlight the abilities and capabilities possible for
individuals with ASDs into adulthood and aging.
Keywords: autism spectrum disorder, adulthood, aging, Asperger, ageing, autism, pervasive developmental disorder
Autism Insights 2013:5 21–73
doi: 10.4137/AUI.S11072
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© the author(s), publisher and licensee Libertas Academica Ltd.
This is an open access article published under the Creative Commons CC-BY-NC 3.0 license.
Autism Insights 2013:5 21
wright et al
Aphorisms—Autism spectrum Autism is used as a counterexample to empathy and inter-
subjectivity but also as evidence of the limitless potential and
Disorders and Adulthood and Aging
neurodiversity of the human mind.11
Autism is one of the most prevalent and severe disorders evident The greatest challenge facing people with AS {Asperger’s
in children and adults.1 Syndrome} is not necessarily their primary symptoms
Unfortunately, only a few longitudinal studies have followed related to AS, or even their comorbid symptoms, but rather
children with autism into adulthood. The studies that do exist sug- finding knowledgeable supports and services in their
gest that only a small number of the people diagnosed with autism communities.12
during the 1980s, before the criteria broadened to include higher- The ASDs are heterogeneous conditions in which 2 people
functioning people, have been able to live independently.2 individuals diagnosed as having the disorder do not necessarily
The aging of the population in western countries, the share a single symptom.13
increasing rate of diagnosis of ASDs, and the burgeoning use Individuals with autism spectrum disorders (ASD) spend
of services by persons with ASDs make the need to learn more their majority of lives as adults …14
about aging and autism a high priority.3 Society’s overwhelming proclivity for depicting autism as a
The number of older people with autism will steadily disability of childhood poses a formidable barrier to the dignity
increase in the foreseeable future and we hope that research and well-being of autistic people of all ages.15
intended to both understand and meet their changing needs Because autism is fundamentally discursive, it cannot exist
across the lifespan will increase apace.4 outside of, or prior to, rhetoric. Rhetoric is, and always has
This [ASD] is a lifelong disorder.5 been, integral to what autism means, what it is, and therefore
The time span of adulthood is greater than that of child- (critically), what could or should be desirable, appropriate,
hood and adolescence combined … as such the adult ASD pop- or dominant ways of living within, understanding, interacting
ulation comprises and will continue to comprise the majority of with, or responding to autism’s shifting ontology at any given
the ASD population.6 historical moment.16
We would like to raise the question as to whether it is appro- This march toward greater specialization, combined with
priate for a patient to receive a diagnosis of AS [Aspergers Syn- the pressing need for expertise in science, technology, engi-
drome] in old age. Indeed, it could be argued that if people have neering and mathematics, so-called STEM workers, suggests
reached 65+ with relatively few problems, it is inappropriate to that the prospects for autistic workers will be on the rise in the
start labeling them now. However, on the contrary, we argue coming decades.17
that there is a great need even for the elderly people to receive
an appropriate diagnosis of AS, because this may ensure that preface
they do not receive an unsuitable intervention—whether that be When conducting a systematic literature review
medication or a psychological regimen.7 most scholars inevitably encounter a magic “hit,”
Although misunderstanding, social isolation, unemploy- a seemingly perfect find, a hoped-for gold-standard
ment, worsening mental health, financial hardship and reduced result, and a real signal in all that “noise.” In other
life chances are still harsh realities for adults with ASD, the words, an article with a title that literally stands out
post-industrial service society expects them to self-direct their as the perfect match within the fine-tuned search
decisions regarding education, training and employment so of parameters, keywords, and advanced search
that they could become flexible participants in a very volatile operators on the topic of their investigative work.
and unstable labour market.8 When conducting this systematic review of the topic
Too often, employers don’t realize what autistics are capa- of autism, adulthood and aging, the journal article
ble of, and assign them repetitive, almost menial tasks. But I titled, “ Gerontological Autism: Terms of Account-
believe that most are willing and capable of making sophisti- ability in the Cultural Study of the Category of the
cated contributions to society, if they have the right environ- Fourth Age” by Haim Hazan18 is one such enig-
ment. Sometimes the hardest part is finding the right job,—but matic discovery. The title of this “perfect” article
organizations are now arising to address the problem.9 leapt from the electronic inventory and begged to be
Even though some autism symptoms seem to decrease with automatically added to a growing list of key articles
age, elderly with autism will not reach normal levels of social collected, analyzed and categorized. But despite the
functioning.10 provocative label of “gerontological autism,” Hazan’s
22 Autism Insights 2013:5
Challenge and promise of ASD in adulthood and aging
article is less an examination of autism as a condi- as a time of “aging without agency”). It includes
tion in the aging experience and more a philosophi- the distancing of the extremely old from the rest of
cal piece on the cultural attitudes toward the oldest us, but who still share the same humanity—and the
old (those in the “Fourth Age”). Hazan used autism seemingly obligatory trajectory of senescence. But
as a descriptive term to indicate the supposed “cross- there is more. The beauty of the serendipity in the
cohort incommunicability” in our postmodern era search process is that it renders further connections.
that reflects a “cultural autism” toward the elderly, Reviewing Hazan’s complex paper led to an article
given their supposed invisibility and separation from by Ian Hacking19 “Humans, Aliens and Autism.” We
mainstream society. In other words, those in extreme recommended those not familiar with the varied land-
old age are in an “extra-cultural” condition placing scape of autism read it. By sharing ten reservations,
them apart from the rest of humanity. qualifications, and cautions about the disorder—the
Hazan’s critique and cultural study of the Fourth condition—Hacking offers a different understanding
Age is provocative because of the use of the word of the common knowledge of autism. We take this as
“autism” (via the work of Hacking).19 He describes a strong template in that the experience of aging and
the experiences of those in later life—because both all of its nuances is still a matter of both scientific
the oldest old and those with ASDs are similar enough and humanistic inquiry. More direct to the goal of
but not in all existential dimensions. The experience this paper, in his astute commentary, Hacking states
was like being “an anthropologist on Mars” (attributed “What we now call autism began as infantile autism,
to Temple Grandin via the work of Sacks)20 or like an but never forget autism is for life.” When placed in
“alien in the land of humans.” But this metaphor for context of what it means to be human, we recommend
“gerontological autism” needs further philosophical the philosophical renderings of the meaning and sig-
examination and is worthy of further clarification. nificance of autism—across the life course—should
Our interest explored in this paper is autism spec- be considered.19,22–25
trum disorder (ASD) as an adulthood condition and
part of the aging experience; but not necessarily a Introduction
declaration that in most cultures to be very old is the The phenotyping, diagnostics, and understanding of
same as being an autist (or labeled as autistic). Even autism in adulthood and aging can be considered the
though our paper has more to do with scientific stud- discovery of new territory slowly being mapped and
ies than epistemological debates, we were curious as catalogued. Yet, the known terrain is still incomplete
to how autism in aging has been “discovered” and and the research horizons as challenging as hic sunt
ironically published in journals about aging issues as dracones. But progress is underway. While there is
a way of describing the failure of developing an inter- much research to be done, the landscape is being
generational language to understand the life-world of charted and points of orientation plotted. The goal
“extreme old-age.” According to Hazan’s perspective of our literature review is to be comprehensive and
this failure is minimally the breakdown in commu- inclusive, instead of restricting the parameters and
nication and social connections—which may be an constraining the search process. We offer an indication
attribute of ASDs, but not necessarily—between the that there has been a modest increase in the amount of
oldest cohorts and the rest of society. literature in this domain in our time frame of interest.
We were interested in conducting a comprehensive We seek an eclectic understanding of the scholarship
systematic review of the literature found up to the on autism, autism in adulthood and aging, and find
revision of this manuscript, March 22, 2013, at the affinity with guideposts and heuristic structures that
intersect of aging and ASD issues. It was fascinating cluster the extant literature into a helpful typology.
to encounter the use of the term “autism” to describe While we do not claim to exhaust the search of every
not only a lifelong neurodevelopmental disorder publication conducted in this domain, we are confi-
present in the domain of adulthood and aging, but dent we present the most up-to-date exemplar publica-
as a way of describing and capturing the fragmenta- tions capturing the spirit of theory, methodology, and
tion of the life course near its terminus (or as Gil- practices of the various constructed subthemes. These
leard and Higgs21 would refer to the “Fourth Age” subthemes provide a relevant structure and working
Autism Insights 2013:5 23
wright et al
matrix to the array of diverse publications thus far. ing ASD such that autism is not seen as a disease or a
Also presented are unique and inclusive perspectives developmental qualitative disorder, but as a behavioral
emphasizing intergenerational factors, life-course extreme in individual variation deserving of rich and
orientation (from young adulthood through old age), supportive mentoring services that facilitate creativity
and a strengths-based component offering a comple- and prosperity for individuals with ASDs.44
mentary perspective to the traditional “disability” and There are most certainly challenges with ASDs
“disorder” (or deficit) conceptual models and research for the individual in adolescence and adulthood;45,46
outcomes. For example, the presentation and descrip- the family;47–55 in the context of our national legal
tion by Brugha et al26 captures the main sentiment of and policy system;56 in the context of ethics and
the traditional model and reviewed ASDs in the con- cultural beliefs;57 and for our communities in an
text of the health sciences. aging society.8,58 But there is hope for meaningful
interventions and support systems and the promise
Autism spectrum disorders (ASDs) are developmental disor-
of a fulfilling life with dignity, productivity, and
ders characterized by impairment of reciprocal social interac-
purpose.14,59,60
tion, social communication and social imagination, often in
While the concept of aging with autism issues is
the presence of restricted repetitive behaviors, with negative
still emerging and empirical findings building, it is
impacts on learning and independence in adulthood, affecting
important to recognize knowledge has been heavily
individuals with abilities ranging from the profoundly learning
skewed toward the early childhood years where a
disabled to the intellectual superior, of whom some may also
plethora of research is more evident and interven-
suffer from other co-morbid psychiatric disorders. (p. 647)
tions are deemed more effective.61 Others have pro-
With this comprehensive description as a ref- posed there is a “infantilization of autism” such that
erence point, a benchmark of understanding, we public awareness and media attention are dominated
recognize the notion of “spectrum” is just that—where by the depiction of autism as a child-bound dis-
classification and conditions warrant a quantitative ability that creates barriers to understanding autism
approach of health status along a continuum rather as a life-long challenge.15 Some say that the focus
than a binary or categorical diagnosis.27 In other words on the childhood years is also where fund-raising
in addition to the three core deficits, the classification and awareness raising has gained the most traction.
and characteristics of autism spectrum disorders For example, in a New York Times story about his
which capture an array of conditions, represents a 42-year-old younger brother, Noah, who is diag-
continuum of social communication challenges, and nosed with autism,63 Karl Greenfield describes how
where heterogeneity is a key descriptor for genetic he struggled with his lifelong impact as a sibling62
factors and for the phenotypic presentation.13,28,29 and offers the insight that many will “grow old with
The heterogeneity in the autism phenotype has many autism.” Many of these individuals, typically older
investigators referring to a broad array of deficits as than age 22, have “aged out” of the educational sys-
“the autisms”,28 although the classification system tem and there is often little in the way of resources
in the new DSM-5 (May, 2013) seeks to consolidate and services for those who exit the secondary school
several ASD subtypes into one entity.30–33,188 system and age into adulthood with autism spec-
We recognize the need to focus on the impairments trum challenges.64 Furthermore, Greenfeld63 indi-
and the physical and mental health disorders associ- cates for those individuals with autism who cannot
ated with autism; but the epistemology should not be find employment, continue on in education, or find
limited or guided by epidemiology or nosology. In the sheltered workshops there are not many options. He
scholarship, there is room for “positive biology”,34 notes
“positive psychology”,35 and even “positive or human-
istic neurology”.36 This paradigm shift should be used If the current CDC [US Centers for Disease and Prevention]
to investigate and understand the landscape for all indi- estimation of prevalence is correct, then there will be an awful
viduals on the autism spectrum and examine the varied lot of adult autistics who need lifetime support and care. Noah’s
dimensions of neurodiversity.24,25,37–43 Some propose life has been a grim study in how scarce those resources are.
a distinctly “quantitative approach” to understand- Without them, his behavior has regressed.
24 Autism Insights 2013:5
Challenge and promise of ASD in adulthood and aging
“Aging out” (beyond educational and social ser- on age of the individual with autism. Geurts and Viss-
vices) and then growing old with autism is still a ers conclude that while the aging trajectory for people
missing piece of the larger puzzle set. “Aging out” at with HFA is typical in most cognitive domains, it is
22 years old (see video documentary Autism: Coming also atypical and divergent from normal patterns in
of Age, a WGBY Public Television Documentary) is other domains. They saw both a “double jeopardy
an expression obviously relative to those who work effect” for visual memory (aging + autism = acceler-
with youth in special education. From a gerontologi- ated decrease in cognitive functioning) and a “safe-
cal perspective this journey is seen as “into aging and guarding effect” (individuals with HFA have acquired
onward”—for the long haul. The ultimate goal of our compensatory strategies to cope with their cognitive
systematic literature review is to fill knowledge gaps challenges as they get older). Geurts and Vissers also
while also serving as a catalyst for more awareness, raise many more questions needing to be answered as
more education, and more interventions addressing research continues to emerge and unfold. These are
the challenges and the promise of ASDs. Scholar- only some of the key questions which call for more
ship should not focus on autism in childhood or as scientific inquiry of autism in an aging society. But of
a medical issue limited to geriatrics, but as a multi- more concern is the overall lack of knowledge in the
disciplinary perspective of the entire life course and domain of gerontology and geriatrics for multidisci-
of various domains of scholarly inquiry.11,65 In other plinary issues of autism.
words, autism does not have an age limit nor does Thus far, the issues of autism associated with
one field or a single profession have a monopoly adulthood, aging and older people “have generated
on understanding autism. It is important to investi- little interest among researchers, which is an unfor-
gate the autism experience through the life course tunate oversight.” Much is left to investigate. There
with an interest in scientific and humanistic dimen- is both good news—the increase in scholarship—and
sions.22,24,25,51,53,55,60,66 Searching the literature with this bad news—the increase is just the beginning.22 We
perspective in mind additional questions arose which hope that by using a heuristic analysis structure to
need to be addressed: (1) How do individuals with present our systematic literature review findings, we
ASD prepare for adulthood?67,68 (2) What happens to will bring more attention and awareness to the topic
people with ASDs in midlife and beyond?69 (3) Do and inspire future research.
ASDs have a distinct and separate profile in childhood
versus adulthood and aging? (4) Are there human
For this section, we recommended
development biological and phenotypic expressions
the following citations as the most
of autism to differentiate autism in childhood and
youth years from the experiences of maturation and relevant and current
senescence? (5) Are potential biomarkers different? Barker ET, Hartley SL, Seltzer MM, Floyd FJ,
(6) Should treatments, services, and programs for Greenberg JS, Orsmond GI. Trajectories of emo-
adults with ASD be organized and delivered in a dif- tional well-being in mothers of adolescents and adults
ferent manner than for children and youth?14 (7) Is with autism. Developmental Psychology. 2011;47(2):
it possible to recover from autism, and if so, how?70 551–61. doi:10.1037/a0021268.47
and (8) Are there differences between aging individ- Dicker S, Bennett E. Engulfed by the spec-
uals with high-functioning autism (HFA) compared trum: The impact of autism spectrum disorders on
to individuals without HFA?71 law and policy. Valparaiso University Law Review.
Some of these questions are addressed in a study 2011;45(2):415–56.56
by Geurts and Vissers.10 They examined the lives of Geurts HM, Vissers ME. Elderly with autism:
older adults with HFA and found mixed results and Executive functions and memory. Journal of Autism
that the differential impact of autism may depend on and Developmental Disorders. 2012;42(5):665–75.
the specific cognitive domain being examined. They doi:10.1007/s10803-011-1291-0.10
suggest knowledge based on childhood and adulthood Grandin T. Thinking in Pictures (Expanded, Tie-In
autism studies cannot be translated directly to elderly Edition): My Life With Autism: New York: Vintage;
with autism because deficits are different depending 2010.37
Autism Insights 2013:5 25
wright et al
Greenfeld KT. Growing old with autism. New York publications found in five databases at the intersect
Times Op-Ed. May 23, 2009b. Retrieved at: http:// of ASD in the domain of adulthood and aging. Using
www.nytimes.com/2009/05/24/opinion/24greenfeld. “ASD” and “adulthood and aging” as the two primary
html?scp=7&sq=karl%20Greenfeld&st=cse63 foci, we had several objectives: (1) Conduct an ide-
Harmon A. Autistic and seeking a place in ally exhaustive, comprehensive review of the literature
an adult world. New York Times. Sep 17, 2011. to derive a cumulative count of relevant publications;
Retrieved at: http://www.nytimes.com/2011/09/18/ (2) Create an inventory of the top exemplar publications;
us/autistic-and-seeking-a-place-in-an-adult-world. (3) Determine if higher order themes emerged in the
html?pagewanted=all59 comprehensive review of publications; (4) Identify the
Neely J, Amatea ES, Echevarria-Doan S, Tannen T. top exemplar articles per emergent theme; (5) Establish
Working with families living with autism: Poten- which emergent theme that had the greatest number of
tial contributions of marriage and family. Journal of publications; and (6) Document the top three journals
Marriage and Family Therapy. 2012;38(s1):211–26. that most frequently publish articles exploring ASDs
doi:10.1111/j.1752-0606.2011.00265.x.51 and adulthood and aging. The literature was system-
Norton R. Aging Out: The Sad Story of the Hod- atically reviewed for relevant peer-reviewed journals,
gins Family. Mar 8, 2012. Retrieved at: http://blog. books, and book chapters to achieve these objectives.
sfgate.com/rnorton/2012/03/07/aging-out-the-sad- To generate a list of articles (as of March 22, 2013)
story-of-the-hodgins-family.64 systematic searches were done in five electronic data-
Robison JE. Be Different: Adventures of a Free- bases: AgeLine, PsychINFO, PubMed, Web of Science
Range Aspergian with Practical Advice for Aspergians, and ProQuest. Various forms and combinations of the
Misfits, Families And Teachers. New York: Crown terms autism, autism spectrum disorder, Asperger
Archetype; 2011.39 syndrome, pervasive developmental disorder, adult,
Rydzewska E. Destination unknown? Transition to adulthood, meta, systematic review, and aging were
adulthood for people with autism spectrum disorders. used. From the database searches, 416 sources pub-
British Journal of Special Education. 2012;39(2):87–93. lished after 1990 and found before March 22, 2013
doi:10.1111/j.1467-8578.2012.00536.x.8 were identified and integrated into this paper. To deter-
Smith LE, Greenberg JS, Seltzer MM. Social mine the relevance of each source or article the abstract
support and well-being at mid-life among mothers was read. If the abstract information was insufficient
of adolescents and adults with autism spectrum the article was read in full. Study reference lists meet-
disorders. Journal of Autism and Developmental ing the inclusion criteria were reviewed to discover
Disorders. 2011;42(9):1818–26. doi:10.1007/s10803- additional studies for inclusion. Relevant books were
011-1420-9.53 identified through published scholarly journal book
Solomon O. Sense and the senses: Anthropology and reviews, published journal article references, Google
the study of autism. Annual Review of Anthropology. Scholar, and through the Amazon.com search tool. Our
2010;39:241–59. doi:10.1146/annurev.anthro.012809. research strategy was also supplemented by inspecting
105012.11 the reference lists of included study articles. To meet
Tammet D. Embracing the Wide Sky: A Tour Across the study inclusion criteria at least one of the study par-
the Horizons of the Mind. New York: Free Press; 2009.43 ticipants had to be aged 18 years and older diagnosed
White SE, McMorris C, Weiss JA, Lunsky Y. with and ASD, autism syndrome (AS), or HFA and
The experience of crisis in families of individuals published or online between January 1990 and March
with autism spectrum disorder across the lifespan. 22, 2013. Studies only providing data on animal sub-
Journal of Child and Family Studies. 2012;21(3): jects were excluded.
457–65. doi:10.1007/s10826-011-9499-3.55
Autism spectrum Disorders
process and procedure for the in Adulthood and Aging: The Major
systematic Literature Review Review publications
This paper is a systematic literature review that includes In this section we highlight the most significant pub-
sources from the year 1990 to 2013 and online-first lications thus far in the domain of autism, adulthood
26 Autism Insights 2013:5
Challenge and promise of ASD in adulthood and aging
and aging. They offer both depth and breadth to the Bishop-Fitzgerald, Minshew, and Eack noted, “This
topic and create a referential benchmark to show cohort of children is rapidly approaching adulthood
how this literature review is different from previous and will need effective treatment and services once
publications. they age out of entitlement services provided within
In their peer-reviewed article “Outcomes in and through the United States special education
Adults with Autism Spectrum Disorders: A Historical system.”
Perspective” published in Autism, Henninger and The 2011 article “Autism Spectrum Disorders in
Taylor72 examine the ways in which researchers define Older Adults: Toward Defining a Research Agenda,”
successful adult outcomes for individuals with ASDs. published in The Journal of the American Geriatrics
Their review includes publications from the first sys- Society, is a major contribution to the literature in the
tematic follow-up reports (about mid-1990’s) to year autism adulthood and aging domain. On behalf of the
2011 (year of their review publications). They divide Autism-in-Older Adults Working Group, Piven and
the historical timeframe into three eras and conclude Rabins3 capture the work and effort of a larger inter-
the First Era studies used vague and unreliable out- disciplinary group that met in March 2010 to review
come scales. Second Era studies, done in the last current knowledge, identify gaps in knowledge, define
decade, mark a focus on more rigorous and empirical research directions to help individuals with ASD,
measures of individuals with ASDs on independence inform the healthcare system, and prepare society
in residential placement, employment, and relation- to meet the needs of this growing population.73 The
ships. In the more recent Third Era, studies were article is not a review publication per se but much of
more likely to consider Person-in-E nvironment (PIE) the extant research relating to key health and medi-
issues offering a more dynamic and broader frame- cal sciences community issues is examined. Piven
work for measuring outcome measures. Although and Rabins also examine ASD issues across the life
Henninger and Taylor note the percentage of adults span in the dimensions of prevalence, manifestations,
with ASD and poor outcomes has stayed about the effect on quality of life, course of ASDs, associated
same over time they offer there is hope for more opti- medical and psychiatric features, interventions, and
mistic future findings. We argue that studies on emer- long-term care. They state prior to the convening of
gent adulthood experiences should take into account the working group only one systematic study had
both PIE factors, which incorporate both subjective been published examining autism issues for adults
and objective indices of independence, and functional aged 50 and older. Based upon the lack of research
abilities. Additionally, they propose an interesting life and gaps of knowledge, the authors articulate the fol-
course stage “emergent adulthood” as a new human lowing future research priorities: (1) Develop diag-
developmental phase between adolescence and adult- nostic criteria and instruments to diagnosis and assess
hood. Identification of this life course stage could the needs of older adults with ASDs; (2) Conduct
alter perspectives of developmental tasks strongly cross-sectional descriptive phenomenology studies
connected to “successful outcomes” in traditional in adults, including current symptoms and behaviors,
studies. neuropsychiatric features, associated medical condi-
In a similar thread, the publication of Bishop- tions, and descriptions of available service and sup-
Fitzgerald, Minshew, and Eack14 represents a port networks; (3) Conduct longitudinal studies on life
systematic review of psychosocial interventions for span trajectories; (4) Conduct neurobiological studies
adults with autism spectrum disorders. Although they examining whether findings (eg, those from genetic
reviewed 1,217 studies, only 13 met their inclusion and imaging studies) in young individuals with ASDs
criteria. They found that the effects of psychosocial are present in older persons with ASDs, and exam-
interventions were largely positive, but the quantity ine the interaction between aging, associated disease,
and quality of studies is limited. We recommend this and autistic symptoms in the brain of autistic individ-
article as it frames the demographic challenges ahead uals as they age; (5) Conduct studies on the psycho-
when placing the current estimates for ASD preva- social, behavioral, educational, and pharmacological
lence (1 in every 88 children) and that approximately interventions in older individuals with ASDs; and
70% of identified individuals with ASD are under 14. (6) Develop mechanisms to support research train-
Autism Insights 2013:5 27
wright et al
ing on aging with ASDs. Piven and Rabins accurately paper is the narrative and data comparison for rele-
identify key intervention and autism policy issues for vant research on ‘neurotypical’ aging in core domains
aging adults versus young adults. For example, they of autistic impairment: social cognition, executive
believe the literature offering evidence of efficacy in function, cognitive style, and memory.75 For exam-
interventions for ASDs in children and adolescents ple, the authors discuss the aging process effects on
raises the question of whether similar interventions “theory of mind” and speculate about the age-related
would benefit middle-aged and older adults; espe- decline in social cognition. They postulate whether
cially those whose condition has not been previously social cognition would worsen in adults with ASD,
recognized, diagnosed or treated. They also propose but note some high-functioning individuals (eg, Tem-
different interventions might be more effective for ple Grandin) may show improving understanding of
different age groups. Furthermore, they propose older socio-cognitive situations, possibly due to increas-
individuals with ASDs, whose social and care needs ing compensation and adaptive abilities. Happé and
have been met by family members, could lose all their Charlton also propose cognitive reserve, compensa-
support with the death or incapacity of their parents tion, quality of life, loneliness, and physical health as
or siblings.52 Many issues yet to be addressed need to areas for future research. Finally, they suggest studies
be researched. of aging in autism will be important not only to plan
In a more recent article titled “Brief Report: appropriate services but also to shed light on the full
The Medical Care of Adults with Autism Spectrum developmental trajectory of this neurodevelopmental
Disorders—Identifying the Needs,”73 Bruder, Kerins, condition, and perhaps provide clues to neuropathol-
Mazzarella, Sims and Stein sustain the biomedical ogy and etiology.
themes proposed by themes proposed by Piven and The team of Mukaetova-Ladinska, Perry, Baron,
Rabins.3 Surprisingly, however, Bruder et al73 do not and Povey76 published their review paper in the
mention or cite the Piven and Rabins review in their International Journal of Geriatric Psychiatry. It
publication. This may be due to the gap in publication represents an effort similar to the Piven and Rabins3
sequence but the connections and concordance of con- publication. Their team met in Newcastle University,
clusions are similar. From their survey, Bruder et al73 UK on October 29, 2009 and wrote on behalf of a
reveal only a few physicians provide medical care for research group wanting to address the question of
adults with ASD. Importantly, results from the same aging in people with ASDs and focus on those with a
survey show the majority of the physicians report lack disability. In terms of the number of publications on
of training in the care of adults with ASD and desire ASD according to age, Mukaetova-Ladinska et al76
more education and training in this area. provide the best comparison in the literature up to
The publication “Aging in Autism Spectrum Dis- the point of our systematic review. They conducted a
orders: A Mini-Review” follows the protocol of the PubMed search for relevant literature between 1946
journal Gerontology. Happé and Charlton’s74 research and January 2011. Their key findings were: (1) There
reflects the small amount of published research they are no data regarding aging in people with ASD;
encountered in their search process. Their conclu- (2) Prevalence rates, clinical symptomology and
sion was that “very little is known about old age in medical and mental health needs, as well as social
autism” (p. 73). Although Happé and Charlton note needs, need to be determined for older individuals
search term parameters for their review article, it was with ASD; (3) There is a need to design appropriate
not clear what time frame they used for their inclu- tools for diagnosing older people with ASD; and
sion criteria (ie, year of publication). Nevertheless, (4) Understanding brain aging in people with ASD
Happé and Charlton’s search results yielded three will facilitate novel therapeutic interventions for
subcategories of publications: case studies report- this population and also knowledge regarding the
ing older individuals with ASD, discussion papers molecular mechanism of aging.77
raising questions about aging and/or the diagnosis In their article published in Research in Autism
of ASD in older age, and papers reporting empirical Spectrum Disorders, Edwards, Watkins, Lotfizadeh,
data from surveys or studies of older individuals with and Poling4 presented the findings of their review of
ASD. The main strength of the Happé and Charlton 146 intervention research studies on autism in the
28 Autism Insights 2013:5
Challenge and promise of ASD in adulthood and aging
top four journals. They discovered most of the 2063 Howlin and Moss offer several recommendations,
study participants were between 2 and 8 years of age eg, systematic follow-up studies from childhood
and only 1.7% (five participants) were 20 years or over the lifespan.
older. The mean participant was age 6.89 and 85.8% In the same Canadian Journal of Psychiatry special
of the participants were male. Edwards et al4 conclude issue Shattuck et al, review 23 studies on the topic of
autism intervention researchers largely overlook older services for adults with an ASD. One of the main con-
people. clusions of their article “Adults with Autism Spectrum
In her paper “How Does Visual Thinking Work Disorders” is that the evidence base of ASD services for
in the Mind of a Person with Autism? A Personal adults is underdeveloped and relatively little is known.
Account” published in Philosophical Transactions We highly recommend readers review this article.
of The Royal Society B, Temple Grandin78 includes a In 2011, Levy and Perry published their article66
list of major publications addressing autism in adult- “Outcomes in Adolescents and Adults with Autism:
hood and aging. She offers a myriad of ways in which A Review of the Literature” in Research in Autism
“thinking” can take place for individuals on the spec- Spectrum Disorder. They offer an excellent review of
trum and proposes three principal autism thinking the literature on outcomes for adolescence and adults
types: (1) photo-realistic visual thinkers (that Grandin with autism. They conclude outcomes in adoles-
identifies with); (2) pattern-thinking (music and math cence and adulthood are dependent on many factors
minds); and (3) word (fact) thinkers. Her primary eg, autism severity, cognitive functioning, language
concern is that as individuals with Asperger’s or HFA development, additional psychopathology, and access
progress through school and college they especially to intervention programs and services. However,
may not be supported or mentored toward specific they also argue that the majority of studies thus are
careers and occupational tracks. Grandin shares her small samples of predominantly higher functioning
autobiographical and retrospective nuances of devel- individuals.
opmental changes and adaptations for an individual Holwerda, van der Klink, Groothoff, and Brouwer
with autism through the college-years and into examine factors that facilitate or hinder the ability
mature adulthood.79 As a result, they may be poorly of people with autism to work in their article87 “Pre-
equipped to realize both functional and fulfilling dictors for Work Participation in Individuals with an
lives into the adulthood and the aging years.80,81 Autism Spectrum Disorder: A Systematic Review
In relation to the topic of this paper it important to published in the Journal of Occupational Rehabilita-
note that Temple Grandin82 turned 65 in August 2012. tion. They found individuals who successfully work
Based upon her life experiences and opportunities, need adequate intervention and services geared to
she believes there is much creativity and talent to be help them adjust to societal psychosocial demands.
harnessed in individuals with HFA and Asperger syn- Holwerda, van der Klink, Groothoff, and Brouwer87
drome (AS). also conclude high quality studies predicting success-
The paper “Adults with Autism Spectrum Disor- ful employment participation are lacking.
ders” by Patricia Howlin and Philippa Moss83 is one In their chapter “Adults with Autism Spectrum Dis-
of many “review” cluster articles in the journal The orders” in the book International Handbook of Autism
Canadian Journal of Psychiatry with a guest editorial and Pervasive Developmental Disorders, Mahan and
titled “Autism in Adult Life” by Eric Fombonne.84 Kozlowski6 provide an extensive overview of key
Howlin and Moss emphasize and restate previ- ASD domains in the literature. These domains include
ous review article themes. They argue that many treatment techniques used among adults with ASD,
adults with ASDs are significantly disadvantaged in prognosis, living placements, transition from high
issues of employment, social relationships, physi- school, employment options and supports, specific
cal and mental health, and quality of life. They state models providing multiple services, and training pro-
most research focuses on young adults, but little is grams focusing on relationships and sexuality.
known about people with ASD as they reach mid- Although the publication is targeted to special-
life and beyond into later life.85 To ensure a better ists in communication disorders, Smith88 has written
future and quality of life for individuals with ASD, a very valuable overview of aging and autism issues
Autism Insights 2013:5 29
wright et al
in her publication, Perspectives on Gerontology. and adolescence. Collectively, they offer a deeper and
Smith88 conducts a review of the literature, identifies comprehensive view of the factors known thus far but
potential needs for individuals with ASD as they age, also show how much is unknown regarding the expe-
and addresses some of the challenges that will affect rience of ASDs beyond childhood and adolescence.
professionals working in geriatric settings as this This systematic literature review contributes to the
population (those with ASD) ages. landscape of aging scholarship by reaching beyond
Poon89 conducted a conducted a systematic review the limitations inherent with each of the previous pub-
of 18 peer-reviewed research articles reporting on lications on autism, adulthood, and aging. It is more
the outcomes of adults with ASD. Poon89 focused inclusive of research topics and categories emerg-
the review on publications about adults with higher ing in the field. For example, this review is different
support needs, and thus studies that focused solely from the Piven and Rabins3 article because their focus
on high functioning autism or Asperger’s syndrome was primarily on older adults and within the optic of
were omitted. Poon89 found that adults with ASD con- medical science, in particular geriatrics, whereas our
tinue to experience significant degrees of impairment review is gerontologically focused, multidisciplinary
in the core deficits and experience poor outcomes in and utilizes a life-course approach to cover topics from
social role attainment. We included this publication emergent adulthood through old age. Similar to Pivens
in this section because of the international focus and and Rabins, the Mukaetova-Ladinski et al76 article is
publication outlet, but Poon89 indicated the review also geriatric-focused and has a distinct neuropsychi-
reflected findings mainly from the North American atric emphasis. The Happé and Charlton74 review was
continent, and Europe. comprehensive but was published in a European-based
Perkins and Berkman reviews the current literature journal Gerontology: International Journal of Experi-
related to quality of life outcomes of aging adults with mental, Clinical, Behavioural, and Technological Ger-
ASD.90 Specific areas for their review include: life ontology. Thus far adulthood and aging research has
expectancy, comorbid physical and mental health issues, primarily been done in Europe and the United King-
ASD symptomtology, and social, residential, and voca- dom. Our review advances the field of knowledge by
tional outcomes. They concluded from their review that primarily targeting a North American audience. Finally
aging with ASD presents challenges, but there is also this review expands the scope of database searches
evidence that positive outcomes are attainable. beyond PsychINFO and previously limited key words
The last publication we highlight in this section is searches (eg, “autism” and “interventions”) that were
the 2012 book by Grandin,82 Different . . . Not Less: the focus of the Edwards et al,4 study.
Inspiring Stories of Achievement and Successful
The preeminent publications we
Employment from Adults with Autism, Asperger’s, and
ADHD [Attention Deficit Hyperactivity Disorder]. recommend for this section are
Although not scientific in nature the book reviews Bishop-Fitzpatrick L, Minshew NJ, Eack S. A sys-
older individuals now diagnosed with ASDs. Their tematic review of psychosocial interventions for adults
stories present a review of their lives and describe with autism spectrum disorders. Journal of Autism
life as an older person with ASD. Even though their and Developmental Disorders. 2012. doi:10.1007/
stores explain their challenges their stories can be s10803-012-1615-8.14
inspirational to anyone who identifies with life chal- Edwards TL, Watkins EE, Lotfizadeh AD, Poling A.
lenges in general. Intervention research to benefit people with autism:
We recommend these fourteen peer reviewed jour- How old are the participants? Research in Autism
nal publications and three book as exemplars that Spectrum Disorders. 2012;6(3):996–9. doi:10.1016/
highlight and emphasize the issues of adulthood, j.rasd.2011.11.002.4
aging, and autism. Researchers for each publication Grandin T. How does visual thinking work
demonstrate the need for an increase in the knowl- in the mind of a person with autism? A personal
edge and understanding of autism issues across the account. Philosophical Transactions of the Royal
life course and to determine if these issues are differ- Society B. 2009;364(1522):1437–42. doi:10.1098/
ent from those associated with autism in childhood rstb.2008.0297.78
30 Autism Insights 2013:5