Follow-up studies published in the past decade have moved toward implementing more rigorous and quantifiable outcome criteria. These criteria are made up of empirical definitions of optimal social functioning such as having meaningful friendships, being competitively employed, and living independently. This focus on practical independence in adult life almost certainly reflects the deinstitutionalization movement for adults with autism and other intellectual disabilities. Kanner’s (1971)
cases of profound social deterioration following admission to an institutional setting were once the norm. However, with institutions across North America closing their doors and more adults with ASD living in the community, researchers sought to describe whether they were thriving in the community. Success in adulthood no longer means avoiding institutionalization, but achieving practical independence in relationships, employment, and living arrangements.
In addition to identifying specific goals of independent functioning in the community, another shift has been an increased emphasis on reliability among outcome measurements. All of the studies in this era used nominal scales of independence in various domains that combine to a composite outcome score. This method facilitates reliability evaluations within follow-ups as well as replicability between studies. This era’s emphasis on reliability is demonstrated in two ways. First, while only 14% of the studies described in the previous section reported any type of reliability, over half of the following studies attempted some kind of inter-rater reliability to ensure that different members of the study teams coded outcome categories in the same way. Also, the wider use of specific, standardized definitions of outcome categories (very good to very poor) increased the reliability of comparisons made between outcome studies.
Perhaps the first study to delineate and apply a numerical index of overall functioning was conducted by Howlin, Mawhood, and Rutter (2000)
. The four criteria they used to describe overall outcomes in adults with autism were autistic behaviors, language, friendship, and independence. Autistic behaviors were rated on a scale of 0 to 6, and language, friendship, and independence were each rated on a scale of 0 to 2 with specific criteria for each score. A composite score of 0–1 describes an outcome of normal / near normal social functioning in adulthood. Across domains, scores of 0 (normal / near normal) describe an adult who has minimal or no problems with stereotyped/repetitive behaviors, competence in communication and relationships, and independence in daily functioning. Their results indicated that 74% of the adults with autism had a poor
or very poor
outcome according to this scale.
The rest of the studies in this category assessed overall outcomes with variations of the Overall Outcome Rating (OOR) scale (Eaves & Ho, 2008
; Howlin, Goode, Hutton, & Rutter, 2004
). This global rating, first proposed by Howlin and colleagues (2004)
, is the sum of scores from three domains – work, friendship, and independent living – with 0 denoting the best outcomes. Work ratings range from 0 to 3 (employed to unemployed); friendship ratings also range from 0 to 3 (close friendship to no friends); and independence ratings range from 0 to 5 (living independently to institutionalization). These ratings are combined into 5 overall categories: score of 0–2 = very good
(i.e., achieving a high level of independence, having some friends and a job); score of 3–4 = good
(i.e. generally in work but requiring some degree of support in daily living; some friends / acquaintances); score of 5–7 = fair
(i.e. has some degree of independence, and although requires support and supervision does not need specialist residential provision; no close friends but some acquaintances); score of 8–10 = poor
(i.e. requiring special residential provision/ high level of support; no friends outside of residence); and score of 11 = very poor
(i.e. needing high-level hospital care, no friends; no autonomy).
Using these more rigorous scoring scales, studies were still generally in agreement with each other as well as with earlier studies. Howlin and colleagues (2004)
collected outcome data on a sample of 68 adults with an IQ of at least 50, diagnosed with autistic disorder between 1959 and 1979. At the time of follow-up, they found that only 4% of adults lived independently, 13% were independently employed, and just under one-half had significant friendships. Overall, the results were similar to findings in previous literature, with 57% of adults demonstrating a poor
to very poor
outcome. Eaves and Ho (2008)
assigned outcome categories to a sample of 48 young adults with autism spectrum disorders (ASD) in British Columbia. Their data indicated slightly more optimistic results than previous studies, with just less than one-half having poor
outcomes and none having a very poor
outcome. Over 50% were still residing with their parents, and 35% were in some kind of supported living arrangement such as a group home or foster care. Only two young adults were independently employed, but about one-half had had some kind of volunteer or sheltered work experience. Note that while the authors used the term ASD, their sample is comparable to those in previous studies in that they were diagnosed mostly with infantile autism prior to the widening of the diagnostic criteria.
A few studies have applied a slightly modified version of the OOR scale (Eaves & Ho, 2008
; Howlin et al., 2004
) to their samples. Gillespie-Lynch et al. (2011)
found results similar to Eaves and Ho (2008)
, with 50% of their sample having a poor
outcome, but none having a very poor
outcome. Esbensen, Bishop, Seltzer, Greenberg, & Taylor (2010)
examined a sample of 70 adults with ASD and comorbid intellectual disability, finding that 61% fell into the two lowest independence categories (comparable to the poor
and very poor
OOR categories). Farley et al. (2009)
conducted a follow-up with 41 adults with autism who had an IQ of 70 or greater to see if outcomes would be better for individuals with average or near-average cognitive abilities. Over one-half of the participants were found to be independently employed, a much higher number than in any previous study. A majority of the adults were also involved in social activities, ranging from church activities to martial arts classes. However, 56% of the sample was still living at home with parents. Overall, these adults – who had higher cognitive functioning than most previous samples – had more optimistic outcomes. About one-half had good
or very good
outcomes, 34% had fair
outcomes, 17% had poor
outcomes, and none had a very poor
outcome. Farley et al. attributed these results in part to their sample’s cultural context. Nearly all of the participants were members of the Church of Jesus Christ of Latter Day Saints (LDS Church), which places a strong emphasis on inclusion and community. As a result, adults in this sample may have been more likely to benefit from the support of religious and community activities throughout their lives than adults in cultural contexts that lack this emphasis on inclusion. Integrating Person and Environment
Despite the positive shift from vague and unreliable criteria to more specific, observable goals of independence, a few researchers have called for further reevaluation of outcome measures for adults with ASD. One such suggestion is for the addition of a broader and more dynamic framework in measuring outcome success, which takes into account the fit between the person and his or her environment (Ruble & Dalrymple, 1996
). When transition to adulthood became a federal initiative in the mid -1980s (Will, 1984
), many criticized the narrowness of its goal of employment for adults with disabilities. Although these goals were later expanded to include a variety of positive post-school activities, Halpern (1993)
advocated adding more dimension by considering four dichotomies: (1) subjective versus objective perspectives, (2) personal choice versus universal entitlements, (3) personal needs versus social expectations, and (4) personal intervention versus social policy development.
At the basis of these four dichotomies is the relationship between the specific criteria outlined in the OOR scales and the individual’s subjective experience in his or her environment. With objective (3), for example, Halpern (1993)
suggested that it is important not only to meet societal norms and expectations of adulthood, but also for the individual and his or her family to feel that personal needs and goals have been achieved. To illustrate this point, consider one individual who has achieved OOR scale criteria such as independent living and competitive employment, but does not have adequate support in his or her living arrangement and dislikes his or her job. Classifying this as a very good
outcome may not reveal a complete picture. Likewise, if a particular individual resides in a group home and has reached optimal levels of objective independence with the support of that setting, that individual and his or her family may disagree with the classification of only a fair
outcome. By comparing personal needs to social expectations, the person-environment relationship tells a more dynamic and complete story of outcomes in adulthood.
Along these lines, Billstedt, Gillberg, and Gillberg (2011)
reevaluated the sample from their 2005 study, adding measures of the relationship between the person and his/her environment. For their first measure, called “Autism-Friendly Environment”, they created a global assessment scale from (1) very good
to (5) very poor.
The item quality categories were: (a) staff and caregivers have specific “autism knowledge;” (b) applied structured education implemented; (c) individual specific treatment/training plan for the person with autism implemented; (d) occupation or everyday life activity corresponding to his/her level of capacity; and (e) overall quality of life level. A second measure, “Parent/Carer-Rating of Individual’s Well-Being”, simply asked the parent or caregiver to rate the individual’s well-being in his or her residential setting on a 1 to 5 scale, very good
to very poor
Results from these person-environment measures revealed dramatically different results compared with the 2005 results that were based on friendships, education, work, and living arrangements only. Whereas 78% of the sample fell into the poor
or very poor
category with the 2005 criteria (Billstedt, Gillberg, & Gillberg, 2005
), 62% were in the good
or very good
category for “Autism-Friendly Environment.” Moreover, 91% of parents/caregivers rated the residential well-being of their child in the good
or very good
categories. Residential statuses included living in the parents’ home (38%) or community-based group homes (49%), with a few in apartments with or without support. Few were competitively employed, and while many parents/caregivers expressed continued concern over meaningful occupation for their son or daughter, over half still rated “occupation at level of capacity” as good
or very good
. Considering this research group’s 2005 study had the highest percentage of individuals with poor
or very poor
outcomes, these high person-environment ratings were especially surprising. Furthermore, they reveal the need to balance criteria based on objective societal norms with criteria that reveal the individual’s subjective perspective of his or her success. Taking both of these into account will reveal a more complete and multi-dimensional picture of adult outcomes for individuals with ASD.