852831

research-article2019
AUT0010.1177/1362361319852831AutismAlvares et al.

Original Article

Autism

The misnomer of ‘high functioning 1­–12

© The Author(s) 2019
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DOI: 10.1177/1362361319852831
https://doi.org/10.1177/1362361319852831

imprecise predictor of functional journals.sagepub.com/home/aut

abilities at diagnosis

Gail A Alvares1 , Keely Bebbington1, Dominique Cleary1,

Kiah Evans1, Emma J Glasson1, Murray T Maybery1, Sarah Pillar1,
Mirko Uljarević2 , Kandice Varcin1, John Wray3 and
Andrew JO Whitehouse1

Abstract
‘High functioning autism’ is a term often used for individuals with autism spectrum disorder without an intellectual
disability. Over time, this term has become synonymous with expectations of greater functional skills and better long-
term outcomes, despite contradictory clinical observations. This study investigated the relationship between adaptive
behaviour, cognitive estimates (intelligence quotient) and age at diagnosis in autism spectrum disorder. Participants
(n = 2225, 1–18 years of age) were notified at diagnosis to a prospective register and grouped by presence (n = 1041)
or absence (n = 1184) of intellectual disability. Functional abilities were reported using the Vineland Adaptive Behaviour
Scales. Regression models suggested that intelligence quotient was a weak predictor of Vineland Adaptive Behaviour
Scales after controlling for sex. Whereas the intellectual disability group’s adaptive behaviour estimates were close to
reported intelligence quotients, Vineland Adaptive Behaviour Scales scores fell significantly below intelligence quotients
for children without intellectual disability. The gap between intelligence quotient and Vineland Adaptive Behaviour Scales
scores remained large with increasing age at diagnosis for all children. These data indicate that estimates from intelligence
quotient alone are an imprecise proxy for functional abilities when diagnosing autism spectrum disorder, particularly
for those without intellectual disability. We argue that ‘high functioning autism’ is an inaccurate clinical descriptor when
based solely on intelligence quotient demarcations and this term should be abandoned in research and clinical practice.

Keywords
adaptive behaviour, autism spectrum disorders, cognitive impairment, intellectual disability

Introduction severe intellectual disability (ID) or with IQs ⩾ 70 (Ameli,

Autism spectrum disorder (ASD) is the collective term for
neurodevelopmental disorders characterized by difficul-
ties in social interaction, verbal or non-verbal communi-
cation, repetitive behaviours or restricted interests, and/or
sensory challenges (American Psychiatric Association,
2013; World Health Organization, 1992). While all indi-
viduals meet the core criteria to receive a diagnosis, func-
tional estimates remain highly variable. ‘High functioning
Courchesne, Lincoln, Kaufman, & Grillon, 1988; DeLong
& Dwyer, 1988; Lincoln, Courchesne, Kilman, Elmasian,
& Allen, 1988; Szatmari, Bartolucci, Bremner, Bond, &
Rich, 1989). While not a formal category in current
1Telethon
Kids Institute, The University of Western Australia, Australia
2Stanford
University, USA
3WA Department of Health, Australia

autism’ is a term often used for individuals diagnosed

Corresponding author:
with ASD who have an intelligence quotient (IQ) estimate Gail A Alvares, Telethon Kids Institute, The University of Western
of 70 or above. The term first appeared in the 1980s, spe- Australia, 100 Roberts Road, Subiaco, WA 6008, Australia.
cifically referring to individuals without moderate to Email: Gail.Alvares@telethonkids.org.au
2 Autism 00(0)
Figure 1.  Number of PubMed mentions over time of autism
and the keywords ‘high functioning’ compared with ‘intellectual
impairment’ and ‘low functioning’.
Search terms were autis* OR Asperger* AND ‘high functioning’ OR
‘low functioning’ OR ‘intellectual impairment’; retrieved 3 March 2018.
diagnostic manuals (APA, 2013; WHO, 1992), the term is
still widely used within clinical practice and research, and
sometimes used interchangeably with Asperger’s syn-
drome. Over time, ‘high functioning’ has become a term
synonymous with expectations of relative strengths in
language, higher IQ, milder symptom profiles and better
long-term outcomes, despite a significant amount of
research countering these assumptions (Fein et al., 2013;
Howlin, 2003; Howlin, Savage, Moss, Tempier, & Rutter,
2014). Longitudinal outcomes also vary widely within
‘high functioning’ individuals, ranging from social isola-
tion, unemployment and limited autonomy, to attaining
meaningful social relationships, employment and greater
autonomy (Magiati, Tay, & Howlin, 2014). The dramatic
increase in the use of ‘high functioning autism’ over the
past decade within research is clearest when contrasted
with the comparatively limited usage of ‘without intel-
lectual impairment’ or ‘low-functioning autism’ (see
Figure 1); although use of the term has been declining in
recent years, many researchers persist in its use in scien-
tific publications, despite ASD-specific journals recently
publishing changes in preferred terminology (Kenny
et al., 2016). There is therefore an increasing imperative
to understand the term’s validity in delineating ‘func-
tioning’ based on IQ.
To estimate an individual’s level of functioning (com-
monly referred to as adaptive functioning), researchers and
clinicians profile an individual’s acquired social and practi-
cal skills relevant for use in typical everyday situations
(Sparrow, Balla, Cicchetti, Harrison, & Doll, 1984). These
skills are often categorized into several domains, including
functional use of verbal and non-verbal communication,
socialization skills (e.g. developing and sustaining mean-
ingful relationships) and everyday living skills (e.g. partici-
pating in the community, self-care skills). Adaptive
functioning is typically assessed through reports of an indi-
vidual’s behaviour or through observational assessments,
with the Vineland Adaptive Behaviour Scales (VABS), a
parent or carer completed questionnaire or interview
(Sparrow, Cicchetti, & Balla, 2005), the most commonly
used measure in ASD research and clinical practice.
Individuals with ASD consistently exhibit poorer adap-
tive functional skills compared with typically developing
individuals or relative to individuals with other develop-
mental conditions (Carter et al., 1998; Kenworthy, Case,
Harms, Martin, & Wallace, 2010; Kraijer, 2000; Liss et al.,
2001; Mouga, Almeida, Café, Duque, & Oliveira, 2015;
Perry, Flanagan, Geier, & Freeman, 2009). Adaptive func-
tioning estimates are sometimes associated with measures
of ASD symptoms (Kenworthy et al., 2010; Liss et al.,
2001), in particular social-communication abilities
(Tillmann et al., 2019), and exhibit age-related declines
(Chatham et al., 2018; Kanne et al., 2011; Klin et al., 2007;
Pugliese et al., 2015; Tillmann et al., 2019), implying that
adaptive skills of children with ASD fall further behind
those of their peers as they get older. While cognitive lev-
els and adaptive functioning estimates are generally cor-
related, adaptive scores tend to be lower than cognitive
estimates for individuals with ASD (Duncan & Bishop,
2013; Kenworthy et al., 2010). This gap between IQ and
adaptive functioning has been noted in individuals with
higher IQ (Bölte & Poustka, 2002; Freeman et al., 1991;
Klin et al., 2007; Kraper, Kenworthy, Popal, Martin, &
Wallace, 2017; Tillmann et al., 2019), although not con-
sistently observed in individuals with lower cognitive lev-
els or ID (Bölte & Poustka, 2002). Although adaptive
behaviour profiles are generally commensurate with cog-
nitive estimates in individuals without an ASD diagnosis
(Sparrow et al., 2005), these previous studies suggest that
there may be a large discrepancy between the IQ and func-
tional abilities in individuals with ASD but without ID.
In many countries the level of support an individual
with ASD receives is at least partly based on an assessment
of cognitive functioning (Bowen, 2014). However, there is
now a strong recognition that intervention decisions are
best supported not by focusing on disability or impair-
ments, but rather on the consequences of symptoms in eve-
ryday life. This has motivated the development of ASD
core sets in the International Classification of Functioning,
Disability and Health (Bölte et al., 2019; Bölte et al.,
2014). While the Diagnostic and Statistical Manual of
Mental Disorders (5th-ed; DSM-5) recommends using
adaptive functioning assessments for those with intellec-
tual impairments, this is not an explicit recommendation
for those without ID, despite an acknowledgement that IQs
are often discrepant from adaptive functioning assess-
ments in ASD (APA, 2013).
Alvares et al. 3
The objective of this study was to examine the relation-
ship between adaptive functioning, measured using the
VABS, and IQ, in a sample of systematically ascertained
cases diagnosed with ASD. While much research in this
area has utilized large convenience samples (e.g. partici-
pant registries or through clinics), we analysed data from
an ASD register in which IQ and adaptive functioning
information were collected at the time of diagnostic eval-
uation. Data have been collected prospectively since
1999, providing a unique and representative sample to
investigate the validity of IQ as a proxy for functional
estimation at ASD diagnosis. We expected adaptive func-
tioning scores to be lower in those with ID (IQs < 70)
compared with those without ID (IQs ⩾ 70). With adap-
tive functioning assessed against age norms and scores
typically decreasing with age in ASD samples, we
expected age of diagnosis to correlate negatively with
adaptive functioning scores. We also hypothesized that
there would be a significant discrepancy between adap-
tive functioning and IQ, particularly in children without
ID and for children older at diagnosis.
Method
Sample
Since 1997, the Australian state of Western Australia has
utilized a standardized procedure for diagnosis of ASD
and determination of eligibility for government-supported
therapies (Glasson et al., 2008). For children below
12 years of age, the diagnostic assessment is performed by
three health professionals (paediatrician/psychiatrist, psy-
chologist and speech-language pathologist), and for ado-
lescents and adults, by at least two professionals (clinical
psychologist and paediatrician/psychiatrist, and speech-
language pathologist, if required). A typical diagnostic
evaluation for ASD in Western Australia consists of a psy-
chological assessment of behaviour and collecting infor-
mation from parents or other relevant informants to
ascertain ASD-relevant behaviours during early child-
hood, a cognitive or developmental assessment to deter-
mine cognitive functioning, and a speech-language
assessment to identify language impairments (if develop-
mentally appropriate). A medical assessment by a paedia-
trician or psychiatrist is also required. Results from these
assessments are then collated to confirm that the diagnos-
tic criteria for ASD have been met according to DSM cri-
terion (APA, 2000, 2013).
The Western Australian Register for Autism Spectrum
Disorders (‘Autism Register’) is an ongoing, independent
and prospective collection of data about diagnosed cases
of ASD in Western Australia (Glasson, 2002). At the time
of diagnosis, clinicians submit information to the Autism
Register using a standardized notification form. Identifying
information (name, date of birth, postcode) is included
with parental consent (or, in the case of adults, own con-
sent). Where consent for identifiable information was not
provided, de-identified clinical data is recorded with gen-
der and year of birth only. Notification to the register is
voluntary, but up until 2010 ascertainment was enhanced
by supplemental annual reviews of missing cases at the
four primary centres in which most diagnostic assessments
were conducted. Diagnostic information from any missed
cases was added to the Autism Register without identify-
ing details.
From 1 January 1999 until 30 June 2017, there were
5941 cases notified to the Autism Register, using
Diagnostic and Statistical Manual of Mental Disorders
4th ed (DSM-IV; n = 4587, 1999–2014: autistic disorder:
n = 3692; pervasive developmental disorder not otherwise
specified: n = 649; Asperger’s disorder: n = 245; childhood
disintegrative disorder n = 1) and 5th ed (DSM-5; n = 1290,
2013–30 June 2017; all ASD) criteria; DSM data missing
for n = 64. Presence or absence of ID was coded using the
clinician’s report of confirmed ID (n = 937) or no evidence
of ID (n = 2891) or the DSM-5 specifier (‘with or without
intellectual impairment’); the IQ score was used in the
absence of a diagnostician’s report. Cases with global
developmental delay or clinician’s report of suspected ID
were classed as ‘Vulnerable for ID’ (n = 751), missing
cognitive data for n = 1357 and five cases recorded with
conflicting data between a clinician’s report and cognitive
estimates. For this study, cases were grouped into the
‘Without ID’ group if there was no evidence for ID and
into the ‘With ID’ group if there was confirmed ID or
where cases were classed as Vulnerable for ID. Where
there was missing data or conflicting information from a
clinician report and the cognitive estimate, these cases
were not included.
Individuals were selected for this study if they met the
following criteria: (1) recorded VABS composite score
and/or any of the domains, (2) aged ⩽ 18 years at diagnosis
and (3) an IQ estimate and/or rating of with/without ID.
This left a final sample of n = 2225 (see Figure S1, availa-
ble online).
Sample characteristics
Table 1 presents the characteristics for the entire sample
as well as for the two groups (with or without ID) and
their statistical comparison. Sex distribution was consist-
ent between groups (without ID: 17.3% female, with ID:
19.1% female; χ2(1) = 1.12, p = 0.28). Children in the ID
group were significantly younger at diagnosis (M = 6.22
SD = 3.45) than children without ID (M = 4.48 SD = 2.72;
t(2220) = 13.09, p < 0.001). A larger majority of the ID
group (83.9%) were diagnosed before 5 years of age
compared with 58.9% of children without ID
(χ2(2) = 165.77, p < 0.001). Proportionally, more children
with ID were diagnosed using DSM-5 criteria (11.3%)
4 Autism 00(0)

Table 1.  Sample characteristics.

Total sample Without ID With ID Between-group

n = 2225 n = 1184 n = 1041 comparisons
Sex (%)
 Female 403 (18.1%) 204 (17.3%) 199 (19.1%)  
 Male 1818 (81.9%) 977 (82.7%) 841 (80.9%) χ2(1) = 1.29, p = 0.26,
ϕc = 0.02
Age at diagnosisa 5.41 (3.25) 6.22 (3.45) 4.48 (2.72) t(1048) = 9.59, p < 0.001,
d = 0.56
Age at diagnosis
  1–5 years 1571 (70.6%) 698 (59.0%) 873 (83.9%)  
  6–12 years 537 (24.1%) 401 (33.9%) 136 (13.1%)  
  13–18 years 117 (5.3%) 85 (7.2%) 32 (3.1%) χ2(2) = 165.77, p < 0.001,
ϕc = 0.27
Diagnostic criteria
 DSM-IV 2009 (90.3%) 1086 (91.7%) 923 (88.7%)  
 DSM-5 216 (9.7%) 98 (8.3%) 118 (11.3%) χ2(1) = 5.91, p = 0.02,
ϕc = 0.05
Diagnosisb
  DSM-IV Autistic Disorder 1662 (76.3%) 848 (74.6%) 814 (78.2%)  
  DSM-IV PDD-NOS 299 (13.7%) 190 (16.7%) 109 (10.5%)  
  DSM-5 ASD 216 (9.9%) 98 (8.6%) 118 (11.3%) χ2(2) = 20.38, p < 0.001,
ϕc = 0.10
Mother’s ethnicity
 Caucasian 1714 (85.0%) 971 (91.2%) 743 (78.0%)  
 Asian 220 (10.9%) 70 (6.6%) 150 (15.8%)  
 Aboriginal 32 (1.6%) 11 (1.0%) 21 (2.2%)  
 Other 51 (2.5%) 13 (1.2%) 38 (4.0%) χ2(3) = 68.69, p < 0.001,
ϕc = 0.19
Father’s ethnicity
 Caucasian 1695 (85.4%) 959 (91.3%) 736 (78.8%)  
 Asian 195 (9.8%) 65 (6.2%) 130 (13.9%)  
 Aboriginal 38 (1.9%) 13 (1.2%) 25 (2.7%)  
 Other 56 (2.8%) 13 (1.2%) 43 (4.6%) χ2(2) = 64.30, p < 0.001,
ϕc = 0.18
Country of birth
 Australia 1990 (92.9%) 1057 (92.5%) 933 (93.3%)  
 Other 153 (7.1%) 86 (7.5%) 67 (6.7%) χ2(1) = 0.55, p = 0.46,
ϕc = 0.02
Language spoken at home
 English 2029 (94.3%) 1119 (97.6%) 910 (90.5%)  
 Other 123 (5.7%) 28 (2.4%) 95 (9.5%) χ2(1) = 48.87, p < 0.001,
ϕc = 0.15

ID: intellectual disability; DSM: Diagnostic and Statistical Manual of Mental Disorders.
Values are count and percentage within groups or mean (SD).
aExact age at diagnosis not available for 53% of cases (only non-identifiable year of birth recorded); age of diagnosis is therefore calculated as year of

birth minus year of diagnosis.

b48 cases were diagnosed with Asperger’s disorder (DSM-IV) but were not included in this analysis as ID and Asperger’s disorder were mutually

exclusive. Missing data excluded list wise from analysis and missing data varied from n = 4 to n = 212. Effect sizes are reported as Cramér’s phi
(coefficient) ϕc or Cohen’s d.

than DSM-IV (8.3% in without ID group; χ2(1) = 5.96,
p = 0.02). Children in the ID group were more likely to
not speak English as a primary language (9.5%) com-
pared with children in the without ID group (2.4%;
χ2(1) = 48.87, p < 0.001) and have non-Caucasian moth-
ers and fathers (both p’s < 0.001). Most children were
born in Australia, with no difference in country of birth
between groups (χ2(1) = 0.54, p = 0.46).
Data collection was approved by the Princess Margaret
Hospital Human Research Ethics Committee (294EP) and
analysis approved by the University of Western Australia
Human Research Ethics Committee (RA/4/20/4266).
Alvares et al. 5
Measures
Demographic information. All cases included basic informa-
tion about the year of birth, sex, country of birth, mother’s
and father’s ethnicity, and primary language at home. Date of
birth, postcode and state of birth (partially identifiable infor-
mation) were provided in 48% of cases. Parental ethnicity
was coded as Caucasian, Asian, Aboriginal or Torres Strait
Islander (Indigenous Australians), or Other. Data recorded
under ‘Other’ were manually checked using standard Austral-
ian classifications (Australian Standard Classification of Cul-
tural and Ethnic Groups, 2016). Where a country was
specified instead of ethnicity or an ambiguous ethnicity
recorded (e.g. Caucasian-Asian), these were kept as ‘Other’.
Adaptive functioning. Adaptive functioning was measured
using the VABS, a standardized measure of daily functioning
elicited from parent or carer reports during an interview or
completed as a survey. The VABS has been designed for ages
from birth through 90 years. Individual items sum to yield an
overall composite score (Adaptive Behaviour Composite)
along with standard scores in the domains of Communica-
tion, Daily Living, Socialization and Motor Skills (Sparrow
et al., 2005). The Communication domain encompasses
items that describe an individual’s expressive and receptive
language, as well as reading and writing. The Daily Living
domain describes skills related to personal (e.g. eating, dress-
ing, hygiene), domestic (e.g. household tasks performed) and
community (e.g. using money, answering the phone) tasks.
The Socialization domain comprises items related to how an
individual interacts with others, plays or uses their leisure
time, and their responsivity and sensitivity to others. Finally,
the Motor Skills domain assesses gross and fine motor skills,
including movement and coordination skills as well as
manipulation of objects using hands and fingers. All scored
domain scores are then summed to yield a composite score,
apart from the Motor Skills domain, which is only adminis-
tered and included in the composite score for children under
the six years of age. Raw items are summed and then sum
scores are standardized to age norms; these standard scores
have a mean of 100 and an SD of 15. Descriptive categories
are provided for interpreting these standard scores: High
(⩾130), Moderately High (115–129), Adequate (86–114),
Moderately Low (71–85) and Low (⩽70). Due to the wide
range of years spanned by this study, the original Vineland
Scales (Sparrow et al., 1984), as well as the second edition
(Vineland-II; Sparrow et al., 2005), in survey, interview or
school versions were reported (Vineland-I, n = 657, Vine-
land-II, n = 1888; version number missing for 15.1%). Cor-
relations between the first and second versions have been
reported between 0.68 to 0.96 across the domains/sub-
domains and across ages (Sparrow et al., 2005).
Cognitive assessments.  Clinicians used a variety of cogni-
tive assessments over the study period, all comprising
standardized (i.e. normed) outcomes (M = 100, SD = 15)
with established psychometric properties suitable for cog-
nitive and developmental assessments. These included the
Bayley Scales of Infant Development (Bayley, 1993), Stan-
ford Binet Intelligence Scale (Thorndike, Hagen, & Sattler,
1986), Mullen Scales of Early Learning (Mullen, 1995),
Wechsler Preschool and Primary Scale of Intelligence
(Wechsler, 1967), Wechsler Intelligence Scale for Children
(Wechsler, 2003), Griffith Mental Development Scales
revised versions (Griffiths, 1996; Luiz et al., 2004), or the
Leiter International Performance Scale (Roid & Miller,
2011). Diagnosticians reported either IQs or developmental
quotients (DQs) depending on the assessment tool used.
Developmental assessments (e.g. the Bayley Scales of
Infant Development, Mullen Scales of Early Learning or
Griffith Mental Development Scales) are often adminis-
tered for very young children or for children who may not
be able to complete a standardized IQ assessment. For chil-
dren with ASD, a developmental assessment is more often
appropriate given the flexible methods of administration,
lack of timed questions, and less dependence on receptive
and expressive language to measure non-verbal domains.
There is evidence that DQ scores may provide a reasonable
approximate for cognitive ability in children with ASD
(Delmolino, 2006; Kurita, Osada, Shimizu, & Tachimori,
2003; Portoghese et al., 2010); as such, where a DQ was
reported, this was used as the IQ estimate.
IQ scores were available for 54.61% (n = 1215) of the
sample and reflected the variation in assessment protocols
used across diagnostic centres. There were several possi-
ble explanations for this high proportion of missing data:
(1) very young children are often administered develop-
mental rather than cognitive assessments; (2) behavioural
difficulties may have made some cognitive assessments
unreliable and therefore not reported; (3) if a clinical pres-
entation did not indicate possible ID or developmental
delay, clinicians may have chosen not to conduct cogni-
tive/developmental testing to minimize assessment bur-
den; and (4) scores may not have been finalized and
available to report by the notifying clinician (as diagnostic
evaluations are conducted by a multidisciplinary team in
Western Australia).
Data analysis
Three sets of analyses were conducted on the VABS
Composite and domain scores (Communication, Daily
Living Skills, Socialization, and Motor Skills): (1) To test
the association between IQ and VABS across and within
groups, first univariate analyses of variance (ANOVAs)
were conducted on the VABS Composite and domain scores
with ID group as the between-group factor. Pearson’s bivar-
iate correlations were then conducted to test the association
between continuous IQ estimates, and each of the VABS
Composite and domain scores. (2) To test for the effects of
age of diagnosis in the relationship between IQ and VABS
6 Autism 00(0)
scores, hierarchical multiple linear regression analyses were
then conducted on the VABS composite and domain scores.
Step 1 included sex as the first predictor (dummy coded),
Step 2 included continuous IQ scores (mean-centred), Step
3 entered ID group (dummy coded), Step 4 entered age at
diagnosis (mean-centred) and the last step entered the inter-
action between age and ID group. (3) To examine the dis-
crepancy between VABS and IQ as a function of the two
groups and age, IQ estimates were subtracted from the
VABS composite and domain scores (excluding the Motor
Skills domain as this is only calculated for children
< = 6 years of age). Age at diagnosis was categorized into
early childhood (<5 years), childhood (6–12 years) and ado-
lescence (> 13 years) groupings. These difference scores
were then entered as dependent variables with ID groups
and age at diagnosis (< 5 years, 6–12 years, > 13 years) as
between-group factors in separate univariate ANOVAs. For
all statistical tests, statistical assumptions for multiple
regression and ANOVAs were met. Significance was set at a
Bonferroni adjusted alpha level of 0.01 within each set of
analyses due to the five adaptive functioning outcomes
(composite score and four domains) included for analysis,
and effect sizes were interpreted as small for d = 0.20 or
r = 0.10, moderate for d = 0.50 or r = 0.30 and large for
d = 0.80 or r = 0.50 (Cohen, 1988).
Results
Adaptive functioning and intellectual ability
VABS scores were compared between the two groups
(with and without ID) in a series of univariate ANOVAs.
As expected, the ID group had significantly lower scores
on the VABS Composite (M = 59.00, SD = 9.81, n = 1007)
compared with children without ID (M = 65.66, SD = 12.13,
n = 1142); F(1, 2147) = 192.25, p < 0.001, d = 0.60. The
largest difference, associated with a large effect size, was
observed for the Communication domain; with ID:
M = 58.41, SD = 11.28, n = 1030; without ID M = 72.97,
SD = 14.88, n = 1170; F(1, 2198) = 654.91, p < 0.001,
d = 1.09. The smallest difference, associated with a small
effect size, found on the Socialization domain; with ID:
M = 60.52, SD = 9.45, n = 1027; without ID M = 63.30,
SD = 11.90, n = 1164; F(1, 2189) = 35.98, p < 0.001,
d = 0.26. We also conducted secondary analyses by adding
sex as a between-groups factor. Males and females did not
significantly differ on the VABS Composite or any domain
score and while two interaction effects were observed on
the Composite and Daily Living Skills, this fell above the
Bonferroni corrected p threshold. See Tables S1 and S2 for
Composite and domain scores for the total sample and
between ID groups and sex, available online.
Bivariate correlations then explored the association
between adaptive functioning and IQ. Significant correla-
tions were observed between IQ and VABS across all
domain and composite scores for the entire sample (Table
2); however, correlations varied within the two ID groups.
For the whole sample, Socialization exhibited the smallest
correlation with IQ (r = 0.11, p < 0.001), which did not
reach statistical significance when examined within indi-
vidual ID groups. For the Composite and other domain
correlations, all remained significant within groups, but
the coefficients reduced in magnitude. Correlations were
also rerun with sex as an additional between-groups factor;
these correlations remained broadly consistent, however,
there were no longer any significant correlations between
IQ and VABS for females with ID. These correlations were
also reanalysed for IQ and DQ estimates separately to con-
firm consistency of effects across cognitive estimates; see
Tables S3 and S4, available online.
Age at diagnosis
Age at diagnosis was negatively associated with the VABS
composite (r = −0.22, p < 0.001, n = 2149), Daily Living
(r = −0.23, p < 0.001, n = 2197), Socialization (r = −0.27,
p < 0.001, n = 2191) and Motor Skills (r = −0.25, p < 0.001,
n = 1654) domains, but not with the Communication domain
(r = 0.01, p = 0.55, n = 2200). Age at diagnosis was posi-
tively correlated with IQ scores for the whole sample
(r = 0.16, p < 0.001, n = 1160), but not when considered
separately for children without ID (r = 0.07, p = 0.08,
n = 726) or with ID (r = −0.10, p = 0.04, n = 434). VABS
Composite and domain scores were then entered into a
series of hierarchical linear regression models, with sex,
IQ, ID group, age and the interaction between age and ID
group as predictor variables. For the Composite and
domains, IQ made significant but small contributions to
predicting adaptive functioning after controlling for sex
(ΔR2 between 0.00 and 0.06; see Tables S5A-E, available
online) with the largest change in variance explained by IQ
for the Communication domain (ΔR2 = 0.21). ID group did
not significantly explain additional variance in any model,
while the addition of age at diagnosis into these models did
(ΔR2 between 0.03 and 0.13). The interaction between age
and ID group significant explained additional variance only
in the Daily Living Skills and Motor Skills domains, add-
ing a small amount of additional variance explained.
Overall, VABS scores alone were not well predicted by IQ,
ID group, age, or the interaction between age and ID group.
Discrepancy between VABS and IQ scores
We next examined the difference (or discrepancy) between
VABS scores and IQ, calculated for the VABS Composite
score and each domain except Motor Skills (omitted since
it is used only for children below 6 years of age). Significant
main effects were observed for ID group (all medium-
large effect sizes; smallest F(1, 1200) = 152.90, p < 0.001,
η2p = 0.11, Communication domain) and age groups (all
Alvares et al. 7

Table 2.  Bivariate correlations between cognitive estimates and adaptive behaviour scores.

For ID groups All cases Without ID With ID

N R n r n r
Composite 1182 0.26*** 743 0.16*** 439 0.15**
Communication 1203 0.47*** 752 0.31*** 451 0.19***
Daily Living Skills 1198 0.19*** 749 0.11** 449 0.15**
Socialization 1197 0.11*** 748 0.05 452 0.07
Motor Skills 812 0.21*** 460 0.14** 352 0.13*

For ID groups Without ID With ID

split by sex
Male Female Male Female

N r n r n r n r
Composite 614 0.15*** 126 0.24** 353 0.16** 86 0.13
Communication 621 0.29*** 128 0.42*** 361 0.19*** 90 0.19
Daily Living Skills 618 0.09* 128 0.27** 360 0.16** 89 0.09
Socialization 618 0.05 127 0.05 359 0.09 90 −0.03
Motor Skills 376 0.15** 83 0.10 279 0.17** 73 −0.02

ID: intellectual disability.

*p < 0.05.
**p < 0.01.
***p < 0.001; 2-tailed.

small-medium effect sizes; smallest F(2, 1200) = 14.83,
p < 0.001, η2p = 0.02, Communication domain) for the
Composite and Communication, Daily Living and
Socialization discrepancy scores; see Figure 2. There were
no significant interaction effects observed between age
and ID group across all analyses (largest F(2, 1195) = 2.18,
p = 0.11, η2p  = 0.00, Socialization domain). The main
effects of ID group reflected a more pronounced discrep-
ancy in adaptive behaviour scores compared with IQ esti-
mates in children with ASD without ID, relative to children
with ID. The main effects of age group reflected increases
in discrepancy scores as individuals got older at the point
of diagnosis; however, these changes with age were con-
sistent across ID groupings; see Table S6 for mean dis-
crepancy scores by age and ID group and Figure S2 for
scatterplots of VABS discrepancy scores by age at diagno-
sis and ID groups, available online.
Discussion
To our knowledge, this is the largest investigation of the
relationship between adaptive functioning and IQ at the
time of ASD diagnosis. Our findings confirm that while
there was an association between adaptive functioning and
IQ, age at diagnosis explained a greater proportion of vari-
ance in adaptive scores than IQ alone. For all domains
except Communication, IQ was only a weak predictor of
adaptive functioning, and the addition of age at diagnosis
improved the predictive capacity of the models. The gap
between standardized adaptive and IQ estimates was large
for those children without ID and continued to remain
large for all children as age at diagnosis increased.
Combined, these results highlight that the term ‘high func-
tioning autism’, used to denote individuals without ID
(IQ ⩾ 70), is not a good descriptor for adaptive functioning
levels at the time of diagnosis. These findings support the
notion that ‘high functioning’ is a clear misnomer when
based on IQ alone; intelligence estimates are an imprecise
proxy for functional ability in ASD and are incongruent
with age at diagnosis.
Previous studies comparing mean adaptive differences
between ASD and non-ASD samples have consistently
found overall lowered adaptive functioning in ASD and
positive correlations of VABS scores with IQ (Kanne et al.,
2011; Kenworthy et al., 2010; Klin et al., 2007; Mouga
et al., 2015; Perry et al., 2009). More recently, very large-
scale studies pooling data from multiple sources have con-
firmed the decline of adaptive functioning in individuals
with ASD with increasing age (Chatham et al., 2018). The
results from this study confirm and extend these reports,
first by illustrating that the difference between standard-
ized adaptive and IQ scores is more apparent in children
without ID than those with ID, and, second, by showing
that these discrepancy scores remain large with increasing
diagnostic age. These findings are consistent with a recent
large study of school-aged children with ASD, which
reported VABS scores below mean IQ levels for children
with borderline or average IQs, and a negative association
of VABS with age (Pathak, Bennett, & Shui, 2019). This
study adds to this large evidence base confirming signifi-
cant adaptive functioning support needs for individuals
with ASD by specifically highlighting these needs at the
8 Autism 00(0)
Figure 2.  Difference between Vineland (VABS), (a) Composite and (b–d) domain scores and IQ by age at diagnosis and ID groups.
time of diagnostic evaluation, where clinical service needs
are most likely to be identified.
The present findings also highlight age as an important
moderator of adaptive behaviour. Adaptive functioning,
when measured using tools such as the VABS, is scored
relative to normative data, so this continuing gap between
IQ and adaptive scores as individuals get older reflects a
large discrepancy in skill development for children diag-
nosed with ASD that continues with age. Expectations for
older children diagnosed with ASD may be different to
those for younger children; informants who complete
adaptive assessments may rate behaviours as not being
achieved because of different expectations relative to an
individual’s age and cognitive capacity. In addition, the
expectations for individuals as they grow is to attain
greater independence in the skills assessed in these kinds
of functional behaviour instruments, which may be par-
ticularly challenging for individuals with ASD to demon-
strate. Alternatively, lag in functional abilities in children
without ID may be due to a slower rate of acquisition of
skills, which is more evident as children get older.
Combined with our data confirming that children without
ID are diagnosed much later than those with ID, these
results emphasize the need for functional adaptive assess-
ments at the time of diagnosis to guide treatment planning
(Tomanik, Pearson, Loveland, Lane, & Shaw, 2007).
The arbitrary use of IQ cut-offs as a proxy for func-
tioning levels has significant implications for funding
models and service provision. While different govern-
ment-supported or health insurance models exist interna-
tionally, these are largely based on receiving a diagnosis
of ASD and/or ID. More recently, some countries have
moved towards models that consider both diagnostic
thresholds and functioning levels for receiving services.
For example, in Australia, the new National Disability
Insurance Scheme allocates government funding based
on the gap between current functional capacity and the
degree of support required to participate in everyday
activities expected of an individual of the same age. In
the United States, funding for intervention services is
provided through public or private health insurance.
However, state-level discretion determines eligibility for
services; this may include an adaptive behaviour assess-
ment, but this is often only requested for individuals with
Alvares et al. 9
developmental delay/ID (Bowen, 2014; Danaher, 2011).
Many US states determine eligibility for services explic-
itly on the basis of an IQ less than 70, rather than a func-
tional assessment (Bowen, 2014). Using IQ cut-offs as a
proxy for adaptive functioning in those without ID risks
inequitable distribution of funds and inadequate funding
to increase functional capacity. Although functional
assessments are broadly recommended by various pro-
fessional bodies involved in ASD diagnostic assessments
and clinical services (e.g. in Australia, the Australian
National Guidelines for ASD Diagnosis; Whitehouse,
Evans, Eapen, Prior, & Wray, 2018; in the United
Kingdom, National Collaborating Centre for Women’s
and Children’s Health (UK), 2011), this is not an explicit
requirement for receiving an ASD diagnosis. While the
use of clinical specifiers (with or without intellectual
impairment, or language impairment) is already embed-
ded within the DSM-5 (APA, 2013), ideally a compre-
hensive ASD diagnostic evaluation would incorporate
functional assessments. This would help identify
strengths and challenges that can guide services and
funding that are more aligned with the types of support
needed and maximize the potential for better long-term
outcomes (Tomanik et al., 2007).
The use of IQ as a proxy for adaptive functioning has
also resulted in the assumption that functioning levels are
stable over time and context. However, there has been lit-
tle systematic investigation into adaptive functioning pro-
files of individuals with ASD across the lifespan. Several
recent studies have recently shown that, when assessed
repeatedly over development, distinct adaptive function-
ing trajectories may be observed in children with ASD;
while the majority exhibit stable or worsening trajectories
of functioning with increasing age, some demonstrate
moderate improvements over time (Farmer, Swineford,
Swedo, & Thurm, 2018; Szatmari et al., 2015). These
recent findings highlight the need for periodic adaptive
behaviour assessments over an individual’s lifespan to
help with understanding potential developmental trajecto-
ries and in planning for clinical service provision
(Szatmari et al., 2015).
The strengths of this study include the large sample
size and prospective design, with data collection stand-
ardized across the sample to the time of diagnosis.
Previous research in this area has primarily utilized con-
venience samples from clinics, data collected through
participant registries, or pooled data across multiple sam-
ples (Chatham et al., 2018; Frazier, Georgiades, Bishop,
& Hardan, 2014; Pathak et al., 2019), which introduces
selective sampling biases and heterogeneity from com-
bining data from different populations with different
ascertainment and diagnostic methods. By contrast, this
study uses data collected at the point of diagnosis, within
a state in Australia that has a standardized method for
ASD diagnostic evaluations. This method of sample
ascertainment limits potential heterogeneity and allows
for a more standardized snapshot of adaptive functioning
with the same reference point for all age groups. In addi-
tion, data were collected from both government and pri-
vate clinical practices, rather than from a research setting,
improving the potential generalizability of findings to
current clinical practice. In using a systematic and popu-
lation-wide ascertainment, these results provide more
clinically relevant and translatable outcomes to demon-
strate the significant effects of IQ and age on adaptive
functioning in ASD at the time of diagnosis.
Despite these strengths, we acknowledge several limi-
tations. A variety of cognitive assessments and VABS edi-
tions were utilized during the time period this study
covered. Although we used standardized estimates, the
variety of tools used may have added greater risk of bias to
analyses. In addition, there were insufficient numbers of
recently diagnosed cases with both VABS and IQ data, so
we were unable to test for differences between DSM-IV
and DSM-5 diagnoses. To further confirm the robustness
of these findings, further research should examine adap-
tive functioning in a larger sample of recently diagnosed
cases in comparison with individuals with ID only or with
another neurodevelopmental condition (e.g. language dis-
orders). Finally, this study used data captured cross-sec-
tionally from cases at the time of diagnosis, which may be
confounded by possible sampling differences across ages
and over time; for example, children with cognitive and/or
language difficulties may be more likely to be identified
and diagnosed at younger ages. Evidence from longitudi-
nal studies, however, suggest that early delays in adaptive
functioning may remain stable or continue to worsen for
children with ASD, which may be predicted by age at diag-
nosis and cognitive factors (Farmer et al., 2018; Szatmari
et al., 2015). The period during which cases were ascer-
tained spanned almost two decades, which may suggest
that changes in diagnostic practices over time may influ-
ence interpretation of the present findings. However, DSM
diagnostic criteria were used for all cases (the majority
assessed to DSM-IV criteria), there was only one change
to criteria during the study period (with the introduction of
DSM-5 in 2013), and diagnostic practices have remained
consistent within Western Australia over time due to fund-
ing requirements (see ‘Sample’ for further details). Indeed,
the significant strength of this dataset lies in the consist-
ency of case ascertainment, data collection and diagnostic
practices over the study period.
Based on the present findings, we argue that ‘high func-
tioning autism’ is a poor clinical descriptor when based
solely on IQ and should not be used in current clinical or
research practices to infer functional abilities. In line with
calls from neurodiversity advocates, the continued use of
the terms ‘high functioning’ can be harmful, denying sup-
ports to those presumed to have greater functional ability
based on IQ in addition to restricting agency and autonomy
10 Autism 00(0)
to those classified as ‘low functioning’ (den Houting,
2019). Instead, researchers and clinicians should strive to
articulate specific phenotypes, whether this is in the context
of diagnostic assessments, treatment planning or in research
investigations. Delineation of specific subtypes and their
effect on functioning will support such change in practice,
for example, specifying cognitive features (e.g. presence or
absence of ID) along with language level (e.g. minimally
verbal or fluent), or other diagnosed conditions. The results
also highlight the need for comprehensive diagnostic eval-
uations that incorporate functional assessments to guide
service provision and funding allocation (Whitehouse
et al., 2018). The present findings suggest that researchers
and clinicians should move away from binary ‘high/low
functioning’ categorical descriptors towards a greater
understanding of the variety of functioning and cognitive
profiles that manifest across the autism spectrum and the
specific support needs required to maximize an individual’s
opportunities and potential.
Acknowledgements
The authors would like to acknowledge the Advisory Committee
of the Western Australian Register for Autism Spectrum
Disorders, as well as the diagnosticians and participants who
contributed data to the register. Author GAA 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.
Funding
The authors disclosed receipt of the following financial support
for the research, authorship, and/or publication of this article:
This work was supported by a National Health and Medical
Research Council Senior Research Fellowship to author AJOW
[APP1077966]; and a Raine Medical Research Foundation
Priming Grant to author GAA [RPG103-18].
Supplemental material
Supplemental material for this article is available online.
ORCID iDs
Gail A Alvares https://orcid.org/0000-0003-3351-5919
Mirko Uljarević https://orcid.org/0000-0002-7481-3923
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