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Profound Concerns about “Profound Autism”: Dangers of Severity Scales and Functioning Labels for Support Needs

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Abstract

Recently the Lancet published a Commission on the future of care and clinical research of autism, which included a side panel arguing for the adoption of “profound autism”, a term in- tended to describe autistic people who require constant supervision or care, thought to usually have significant intellectual disability, limited or no language, and an inability to advocate for themselves. This state-of-the-art review deconstructs problems with autism sublabels such as “profound autism” and low- and high-functioning labels. It then examines the communicative and cognitive capacities of minimally speaking autistic people, finding that such individuals can communicate (especially with responsive partners) and need nonverbal testing that allows them to demonstrate their potential strengths. It concludes with the ability of minimally speaking autistic people to self-advocate, and the influences of other people to both support and frustrate their communication.
Citation: Kapp, S.K. Profound
Concerns about “Profound Autism”:
Dangers of Severity Scales and
Functioning Labels for Support
Needs. Educ. Sci. 2023,13, 106.
https://doi.org/10.3390/
educsci13020106
Academic Editors: Amanda
A. Webster, Jacobus G. Maree
and Debra Costley
Received: 4 October 2022
Revised: 12 January 2023
Accepted: 16 January 2023
Published: 19 January 2023
Copyright: © 2023 by the author.
Licensee MDPI, Basel, Switzerland.
This article is an open access article
distributed under the terms and
conditions of the Creative Commons
Attribution (CC BY) license (https://
creativecommons.org/licenses/by/
4.0/).
education
sciences
Review
Profound Concerns about “Profound Autism”: Dangers of
Severity Scales and Functioning Labels for Support Needs
Steven K. Kapp
Department of Psychology, University of Portsmouth, King Henry Building, King Henry I Street,
Portsmouth PO1 2DY, UK; steven.kapp@port.ac.uk
Abstract:
Recently the Lancet published a Commission on the future of care and clinical research
of autism, which included a side panel arguing for the adoption of “profound autism”, a term in-
tended to describe autistic people who require constant supervision or care, thought to usually have
significant intellectual disability, limited or no language, and an inability to advocate for themselves.
This state-of-the-art review deconstructs problems with autism sublabels such as “profound autism”
and low- and high-functioning labels. It then examines the communicative and cognitive capacities
of minimally speaking autistic people, finding that such individuals can communicate (especially
with responsive partners) and need nonverbal testing that allows them to demonstrate their potential
strengths. It concludes with the ability of minimally speaking autistic people to self-advocate, and
the influences of other people to both support and frustrate their communication.
Keywords: support needs; neurodiversity; profound autism; inclusion; education
1. Introduction
Recently the Lancet published a Commission on the future of care and clinical re-
search in autism, which included a side panel that proposed profound autism as an ad-
ministrative term to describe autistic people likely to have high support needs [
1
]. The
Lancet Commission lacks a clear definition or inclusion criteria for “profound autism” but
operationalizes it through IQ at or below 50 (in the verbal or nonverbal domain, or overall)
and/or minimal or inconsistent use of phrase speech [1].
However, because autistic people have complex diversity in our manifestation of
degrees and types of autistic traits and in our support needs, researchers have failed to
clearly validate (e.g., independently replicate) subtypes of autism [
2
]. Even researchers
who have championed the idea of multiple “autisms” [
3
] and described the need to “take
autism apart” [
4
] have abandoned this fruitless quest to instead call for identifying features
that are shared between multiple diagnostic categories, e.g., [
5
]. Indeed, transcending
the neurodiversity of individuals, environmental influences such as acceptance versus
victimization shape development [
6
,
7
]. For example, studies have found that peers are
more likely reject autistic people with subtler or “milder” behavioral presentations of
autism [
8
14
], such as the “active but odd” “social interaction style” proposed by Lorna
Wing [
9
,
10
,
15
]. Autistic children with active initiation of prosocial approaches more often
encounter rejection than autistic children with passive approaches [
8
10
]. This may explain
why “social initiation and affiliation” shows only a weak relationship to other putative
“subdomains” of autistic people’s social communication [
16
], as people who are able and
motivated to actively initiate may feel less inclined to do so after rejection. Given the
stressful nature of bullying that may target autistic people who appear “odd” rather than
“disabled” [
11
14
,
17
19
], autistic adolescents’ tendencies to increase in social anxiety even
while (a) their typically developing peers decline in it [20] and (b) their autistic traits tend
to become less behaviorally pronounced [
21
], supports evidence that many peers put them
into victimization spirals even as they try to “camouflage” or fit in [22,23].
Educ. Sci. 2023,13, 106. https://doi.org/10.3390/educsci13020106 https://www.mdpi.com/journal/education
Educ. Sci. 2023,13, 106 2 of 20
Those who argue for reductionist labels often misapply if not misunderstand pioneers
of autism research. While Lorna Wing introduced the notion of an autism “spectrum” [
24
],
she did not intend this in a linear sense, but rather believed in autism’s multi- dimen-
sionality [
25
,
26
]. Some have referred to autism with intellectual disability as “Kanner’s
autism” or “classic autism”, but Leo Kanner in his first paper on autism described the
“unquestionabl[e]
. . .
good cognitive potentialities of all autistic children he assessed “Even
though most of these children were at one time or another looked upon as fee- bleminded”
and railed against the ability of standardized IQ tests to measure the intelligence of autistic
children [
27
] (p. 247). He decried the “dumped” institutionalization of an autistic girl
dismissed as “feebleminded” who he thus felt had an underestimated ability [
27
]. Con-
cerns remain today that “profound autism” could be used to promote segregation, while
lacking validity.
This evidence-based review argues against reductionist functioning terms and “pro-
found autism” for reasons that overlap with the Lancet Commission’s repeated acknowl-
edgements (e.g., of autistic people’s “heterogeneity” and “potential for change”) [
1
]. It
questions “profound autism”’s limited scientific validity and feasibility in everyday prac-
tice. Next, it argues that the term describes autistics whose limited speech or verbal IQ has
caused many to underestimate their communication and intelligence. The synthesis sug-
gests instead evidence-based personalized provision for each individual’s profile of strengths
and weaknesses, and unity around systemic issues for autistics with the highest support
needs to live the lives they want.
2. Methodology
This article employs a state-of-the-art review in that it addresses the current matter
of the novel “profound autism” category proposed by “The Lancet Commission on the
future of care and clinical research in autism” [
1
]. As opposed to more traditional literature
reviews, a state-of-the-art review offers a new critical perspective on current issues via a
comprehensive review of the literature [
28
]. It conducts its analysis on the current state of
knowledge using narrative synthesis and concludes with priorities for future research [
28
],
focusing its critique on The Lancet Commission’s report and the historical context of failed
attempts at functioning labels and subtypes for autism.
2.1. Research Questions
This state-of-the-art review aimed to address the following four research questions:
(1)
Are functioning labels for autism valid?
(2) Is the intelligence of autistic people with lower verbal IQs, especially autistic people with
intellectual disability according to tests with verbal components, often underestimated?
(3)
Similarly, on which IQ tests do such autistic people tend to fare best?
(4) Overall, is the communication of autistic people with minimal speech underestimated?
2.2. Design
The review initially followed the following inclusion strategy [29,30]:
(1)
All papers published in the journals American Journal of Intellectual and Developmental
Disabilities,Autism,Autism Research,Intellectual and Developmental Disabilities,Journal
of the American Association of Child and Adolescent Psychiatry,Journal of Autism and
Developmental Disorders,Journal of Child Psychology and Psychiatry, and Research in
Autism Spectrum Disorders between 2005 and 2015.
a. Papers cited in relevant articles within these journals and time span.
b. Papers citing relevant articles within these journals and time span.
(2) Searches for (a) “high-functioning” or “low-functioning” autism, (b) nonverbal IQ tests
and IQ tests with verbal and nonverbal components to which the nonverbal IQ tests
have been compared for autistic people (beginning with the “Raven’s” and “Leiter”),
Educ. Sci. 2023,13, 106 3 of 20
and (c) “minimally verbal” in multiple databases (including Pubmed, PSYCHInfo,
and Google Scholar).
Following publication of “The Lancet Commission on the future of care and clinical
re-search in autism” [1], the inclusion criteria came to encompass:
(3)
The Lancet Commission and academic and community sources relevant to a critique
of its:
a. scientific and social validity
b. feasibility
(4)
An updated search related to:
a. “minimally verbal” autism
b. any literature building from the previously identified sources.
(5)
A multi-database search of literature on autism and augmentative and alternative
communication (AAC), in response to reviewer comments requesting content in
this area.
2.3. Data Analysis
Any identified paper related to the research questions, or otherwise known to the
author, was considered for fit, quality, and breadth [
28
,
30
,
31
]. No papers were excluded for
contradicting other findings [29], but instead such results required critical analysis [28].
2.4. Research Type
This article is a state-of-the art review [
28
], adapted [
31
] from a critical narrative re-
view [
28
,
29
]. It is adapted in that the original review (see (1) and (2) in the Design subsection
for its inclusion criteria) was updated to critique the Lancet Commission’s report on the
care and clinical research of autistic people [
1
], and the inclusion criteria grew to cover (3)
to (5) as well. The author felt a state-of-the-art review was more appropriate as the scope of
the various issues raised by the Commission’s report was too broad for a systematic review.
It is critical because the original review, like the review explicated in this article, found that
functioning labels for autism lack validity, IQ tests with verbal components may underes-
timate the intelligence of minimally speaking autistic people, and the communication of
minimally speaking autistic people may be underestimated. Therefore, the author decided
to critique the empirically unsupported or questionable claims of the Lancet Commission,
throughout the article’s analysis of (1) functioning labels, (2) the “profound autism label”,
(3) the communicative and cognitive capacities of minimally speaking autistic people, and
(4) autistic people’s ability and need to self-advocate. My article extensively and flexibly
researches and critically evaluates the literature through narrative synthesis [28].
3. Functioning Labels
3.1. Developmental Gains
Autism varies broadly in manifestations and autistic people have wide differences in
support needs, although these have too much complexity to reduce to simple terms such as
“profound autism” or “low-“ or “high-functioning”. Autistic people tend to make gains
over time, as acknowledged by the Commission’s repeated assertions of autistic people’s
“potential for change”, that often occurs with age and intervention or environmental modi-
fications [
1
]. This includes people the Commission retroactively labelled with profound
autism, who “moved out” of the category through language and IQ improvements [
1
]
(p. 279). It occurred to the point that the term showed poor stability (only 83%) according
to the Commission’s own dataset, compared with autism as a whole (about 91%) [
32
].
This occurred for a cohort assessed at age 12 and reassessed at age 23 [
1
,
33
], yet the Com-
mission claims “profound autism” works best for adolescents and adults [
1
]. Indeed, the
Commission acknowledges that young autistic people with speech delays often improve
dramatically [
1
], yet it says “profound autism” may be applied to “early school age” [
1
]
(p. 278). Most autistics in early childhood with minimal speech may go on to have fluent
Educ. Sci. 2023,13, 106 4 of 20
speech [
34
]. This dovetails with evidence that autistic people with speech onset delay tend
to have strengths over autistic peers without a history of language delay that helps them to
developmentally catch up [35].
3.2. Within-Person Variability
Autistic people experience so much within-person variability in their abilities and
sensory processing that a participatory study recently identified these as core autistic
traits [
36
]. Performance and functioning commonly change for the same tasks for the same
autistic individuals even within the same day [
37
,
38
]. For example, sensory (e.g., visual,
auditory, tactile) processing has shown atypical variability for autistic people [
37
]. Autistics
have described how factors such as their mental state and the control they have over
the environment affect how they perceive sensory stimuli [
39
]. Similarly, autistic people
have shown more variability in their movement for the same tasks over time than people
identified as hyperactive or with tics, i.e., people with ADHD and Tourette’s [38].
3.3. Uneven Skills
Autistic people tend to have highly uneven skills [
36
,
40
], which invalidates the assign-
ment to binary categories such as “high-” or “low-functioning”. Autistic people often have
large discrepancies between verbal and nonverbal IQ scores, with those who have more
limited speech usually performing significantly better on nonverbal IQ tests [
41
]. IQ scores
poorly predict academic achievement for autistic youth [
42
], who usually have verbal
and mathematical strengths (e.g., hyperlexia) or weaknesses (e.g., dyslexia) significantly
different from their overall IQ score [
43
]. Autistic people as a group tend to struggle in
adaptive functioning, with a gap between (low) adaptive behavior and an IQ that rises
with age and test scores. There is especially a mismatch between (low) adaptive behavior
and IQ with higher age and test scores [4452].
3.4. Social Context
As the Commission states, “a substantial proportion of the risk of poor outcomes is
likely to be socially produced” (p. 277) and “the course of an autistic individual’s develop-
ment is determined by other factors as much as the condition itself” (p. 291), including the
enrichment and modification of the social environment [
1
]. Social context also affects autis-
tic people’s functioning, such as the benefits from parental acceptance of autism [
53
57
]
and inclusive educational settings [
58
67
]. Moreover, peer
attitudes [1113]
and a services
drop-off after high/secondary school [
68
71
] may disproportionately adversely affect the
functioning of people with subtler autistic traits without intellectual disability. The rest of
this review will explore how the “low-functioning” and “profound autism” labels may
exclude opportunities for and underestimate autistic people. Relatedly, the Neurodevelop-
mental Disorders Workgroup that revised the autism diagnosis in the DSM-5 opposed a
severity scale because autistic people may function well because they have support, sharing
the concern raised by Ari Ne’eman and the Autistic Self Advocacy Network [72,73].
3.5. Need for Support
The DSM-5 Workgroup decided to consolidate all autism diagnoses into one and
opposed a severity scale, not because autistic people all have similar needs, but because
of the above nuances [
40
,
72
,
73
]. What diagnosis on the autism spectrum an individual
received in the DSM-IV era had more to do with the site of assessment they went to
than their individual characteristics [
74
]. Therefore, because the American Psychiatric
Association (APA) imposed some form of severity scale, the classifier became reframed
as being about “need for support” to try to focus on access needs even when individuals
function well [
40
,
73
]. The Workgroup similarly also adopted ASAN’s recommendation
that the levels of need for support “should not be used for eligibility for and provision
of services; these can only be developed at an individual level and through discussion of
personal priorities and targets” [40] (p. 51, 72). Indeed, separate “severity levels” exist for
Educ. Sci. 2023,13, 106 5 of 20
the domains of social communication and restrictive, repetitive behaviors [
40
], so service
providers cannot reduce all autistic people to a single severity level.
How these levels get measured has huge implications if used for services, yet the
DSM-5 does not offer specifics. As the Commission acknowledges, differences in the
methods used to assess intellectual ability, language ability, and autistic traits make a big
difference [
1
]. Against the DSM-5’s advice, systems such as Australia’s National Disability
Insurance Scheme make decisions about eligibility for and the provision of services based
on which “severity level” an autistic person supposedly has. It problematically prioritizes
these severity levels above actual functional assessments [
75
]. As the Commission noted,
autistic people’s support needs have the potential to fluctuate, justifying monitoring and
follow-up assessments [
1
]. However, clinicians and service providers often rely on the
initial diagnostic assessment [
1
], treating the diagnosis as prescriptive when it is more
accurate to think of it as descriptive. Despite recognizing such limitations of clinical practice,
the Commission nevertheless introduces the term “profound autism” that presents further
scientific and practical problems.
4. “Profound Autism” Label
The “profound autism” term recommended by the Lancet Commission [
1
] comes with
several self-contradictions that reflect its limitations. As the Global Autistic Task Force
on Autism Research noted, the term implies that it describes profoundly autistic individ-
uals [
76
]. Instead, it describes co-occurring intellectual disability or structural language
impairment [
1
,
76
], or (implicitly) apraxia of speech (motor problems with speech produc-
tion) [
77
,
78
]. Therefore, it may mislead practitioners and individuals or families to think of
those separately diagnosable disabilities as core autistic traits [
76
]. Moreover, someone with
intellectual disability or language impairment may not have “profound” autistic traits [
76
].
Indeed, autistic traits have only a modest, or even statistically insignificant, relationship
to adaptive functioning [
79
83
]. Among minimally speaking autistic people, the number
of words expressed do not clearly relate to autistic traits [
41
]. However, the Commission
defines “profound autism” through cognitive and language skills, even as it admits that
research has explained little about how these or co-occurring conditions “contribute to
responses to different treatments” [1] (p. 291).
The Commission acknowledges that the DSM-5 [
40
] and ICD-11 [
84
] current classifica-
tion systems encourage diagnosing co-occurring intellectual and language impairments
in autistic people [
1
]. Nevertheless, the report notes that these “are not consistently used
in practice or in research” (p. 278) in citing the need for a “profound autism” label [
1
].
This unofficial label would repeat the same DSM-IV problems of inconsistent research
and the practical applications of autism. Indeed, the Commission acknowledges autism’s
“unreliable categorical subtypes” (p. 293), yet it proposes a new one [1].
4.1. IQ below 50
One of the two main pathways to eligibility for “profound autism” is having an IQ
below 50, which the Commission operationalized as being in either the verbal or nonverbal
domain [
1
]. The discrepancy between these domains for such individuals favors nonverbal
scores [
41
], such that someone may have a high nonverbal IQ alongside an extremely low
(if testable) verbal IQ [
85
,
86
]. Some minimally speaking individuals with a high nonverbal
IQ have a good understanding of language [
87
], and their support needs may look quite
different from people who have profound intellectual disability (as the term “profound
autism” may also imply).
Diagnosing “profound autism” in practice risks commonly diagnosing non-autistic
people with severe to profound intellectual disability as autistic. The DSM-5 stipulates
that the diagnosis of autism in the presence of intellectual disability should only occur
when social communication traits exceed those expected for the (nonverbal) developmental
level [
19
], which the Commission generally acknowledges [
1
]. However, among people
with severe to profound intellectual disability, people with and without autism diagnoses
Educ. Sci. 2023,13, 106 6 of 20
may share similar levels of social communication difficulties [
88
]. That data again comes
from adolescents and adults [
84
], the Commission’s recommended period for assigning
“profound autism” [
1
]. It also comes from the first author of the Lancet Commission using
the ADI-R [
89
] and ADOS-2 [
90
] tools the Commission recommended as being better at
differentiating between autism and severe intellectual disability or developmental delay,
whereas most other instruments perform worse [1].
Rather than express concern about the possibility of over-diagnosing non-autistic
people with severe to profound ID as autistic, the Commission advocates for applying
autism interventions to people who do not meet the criteria [
1
] However, this conflicts with
the Commission’s repeated advocacy for personalized, evidence-based assessments and
interventions that consider individuals’ strengths and weaknesses [
1
], considering that
autism-related weaknesses and strengths can inform treatment. Autistic people tend to
have strengths in visual perception [
91
,
92
], which especially apply to autistic people with a
history of speech onset delay and lower scores in verbal comprehension [
93
98
], including
those who remain minimally speaking well into childhood [
85
]. These strengths related
to greater core autistic traits [
99
101
], perhaps because autistic people can usually take
in greater amounts of visual information [
102
,
103
], but this risks becoming overloading.
Colored filters overlaid onto words enabled autistic children with and without intellectual
disability to read faster than peers matched for receptive vocabulary, whereas peers had
a marginal benefit [
104
]. Other studies reported similar patterns for colored overlays on
photographs for reading facial expressions helping only autistic children [105,106].
4.2. Minimal Speech
In addition to a (verbal or nonverbal) IQ below 50, the Commission describes al-
lowing the eligibility for meeting “profound autism” through a lack of short phrases or
sentences in speech [
1
]. However, autistic individuals may have expressive language or
other communication without speech, especially if they have sensory-motor impairments
such as apraxia of speech [
77
,
78
] and severe dyspraxia of movement [
107
109
]. These
render some autistic individuals unable to produce their own speech without affecting an
understanding of language [
78
], but through accessing a communication system they may
express their ideas. While such individuals generally understand more language than they
can convey, the Lancet Commission unfortunately does not necessarily advise assessing
receptive language (only if “this is in question”, p. 296), and never mentions apraxia of
speech [
1
]. Individualized approaches to testing can help minimally speaking autistics
demonstrate receptive language, which may require multiple types of assessments, such as
eye-tracking and responses by touchscreen [86].
Assessment plays a gigantic role in understanding minimally speaking autistics. Stud-
ies vary widely in the measures and definitions they use [
110
]. Five commonly used
instruments to measure “minimally verbal” autistics resulted in an overlap ranging wildly
from 3 to 100% in a sample of 257 children [
91
]. However, the Commission did not offer
specifics in its definition or how to implement it, and indeed applied different definitions
and measurements that contributed to different results [1].
5. Establishing Communicative and Cognitive Competencies in Minimally Speaking
Autistic People
Designation of “profound” or “low-functioning” autism risks creating the false im-
pression that autistic people cannot communicate or advocate for themselves, an assertion
that the Lancet Commission makes about most people they consider to meet criteria for
“profound autism” [
1
] yet minimally speaking autistic children can agree or disagree, re-
quest, label, and respond [
111
]; make clear bids for attention [
112
,
113
]; and gesture [
114
].
Autistic children with minimal to no speech can generally learn from observation [
115
]
and understand and engage with goals [
116
], the syntax of phrases [
117
]), and stories [
118
].
They demonstrate interest and affection (e.g., approach, active gaze, touch) and reciprocal
imitation in response to others’ interactive imitation of their behavior [112,119].
Educ. Sci. 2023,13, 106 7 of 20
5.1. Responsive Communication from Social Partners
Labels such as “profound autism” may cause unintended underappreciation for the
role of social partners in autistic people’s communication. It appears that minimally speak-
ing autistic children often lack sufficient opportunity to engage, since others may act
intrusively instead of following their lead and imitating their unusual behaviors to elicit
their attention [
120
]. They often exhibit difficulties with disengaging their attention (or
a sustained focus that resists distraction), turning their head, and executing intentional
actions alongside possibly enhanced perception that may enable skill in peripheral vision.
These features may give their bids for joint attention atypical and underrecognized manifes-
tations [
121
]. Thus, especially perhaps because of these children’s difficulty with processing
and producing quick and well-coordinated body language, slower facial expressions and
other nonverbal cues from their communication partners help autistic children and adoles-
cents with limited speech to imitate [
122
]. Similarly, parents’ observation of clinical sessions
that model how to interact with their minimally speaking autistic child of elementary school
age, and the first month of training on how to communicate with their child produced the
greatest gains for parents’ implementation of an intervention for joint engagement with
their child [
123
]. The parents’ fidelity drove the shared engagement [
73
] that helped the
children produce language gains [
124
] through a greater initiation of interactions [
125
].
Parents’ use of strategies that synchronize their behavior in response to their child’s, such
as matching their child’s pace, mainly account for the gains of this intervention across
developmental levels [126].
5.2. Educational Inclusion
Such responsive rather than directive communication especially helps speech-delayed
autistic people to build language and cognitive skills [
127
130
]. Responsive approaches
require an understanding of the individual to follow their lead and focus of interest,
yet autistic and non-autistic people often struggle to understand one another [
131
133
].
Early maternal understanding of and bond with their autistic child accounted for the
child’s placement in an inclusive educational setting, beyond the effects of the child’s IQ
or interpersonal competence [
63
]. Perhaps reflecting difficulties relating to their autistic
children, parents have more often preferred inclusion for children with Down syndrome
rather than autistic children [
134
]. Low IQ has also influenced placement decisions for
autistic children [
135
,
136
]. Higher levels of education inclusion relate to the better func-
tioning of autistic youth, including with intellectual disabilities, beyond the effects of
demographic and individual characteristics [
59
]. The Lancet Commission likewise recog-
nized and documented the evidence base of intellectual, educational, academic, and other
improvements from educational inclusion for autistic children and adolescents of various
abilities [1,114117]
. This evidence underlines the travesty that historically befell children
with intellectual disabilities who were assigned diagnoses of idiot,imbecile, and moron and
graded for their supposed educability [137,138].
5.3. Augmentative and Alternative Communication
Segregated settings for autistic children may cause them to suffer from the lack of
typically developing peers as classmates as well as lower expectations and educational
quality, such as less instruction and a focus on applied skill development [
60
62
,
139
,
140
].
In a classroom of minimally speaking autistic children, the classroom quality lacked an
association with their IQ scores and the adults at school missed many of their frequent
communication attempts, limiting them to little engagement mostly with aides [
139
]. Only
one child in a study of 36 minimally speaking autistic students in segregated classrooms
used an AAC device and he had among the greatest communication [
139
]. In the U.S., most
special education teachers who supported students with complex disabilities using AAC
identify challenges such as a lack of training and of comprehensive assessment, inadequate
preparation time, and inconsistent implementation of AAC across staff [
141
]. Similarly, in
Saudi Arabia, special education teachers recognized the school as the biggest barrier to
Educ. Sci. 2023,13, 106 8 of 20
student access to AAC and professionals’ need for training, but family members’ support
also played a role [
142
]. Indeed, the perceived value of both parents and professionals
toward AAC affect whether and how it becomes used [
143
]. Unfortunately, many parents,
teachers, clinicians, and other practitioners falsely believe AAC may interfere with their
minimally speaking autistic child’s language development [144].
Instead, AAC can be used to teach a variety of communicative functions, and all
systematically reviewed studies showed improvements in communication skills, with the
strongest effects for speech-generating devices (SGDs) and communication boards [
145
];
also see [
146
148
]. The study with the strongest quality of evidence [
145
] showed that an
SGD-assisted tablets enabled more speech and communication for minimally speaking
autistics [
124
], an effect maintained over time [
149
]. Individual preference also influences
which AAC devices help students gain reliable access to communication [150].
Eye-tracking may help to design even better AAC systems for minimally speaking
autistic children [
151
], given their reduced demands [
152
]. For example, studies from
autistic children suggest that using less realistic and less socially complex images and
showing the displays for long enough for them to interpret may help [
151
]. Minimally
speaking autistic children have had less success with eye-tracking trials (60%: [
82
]) than
the rates of the above 80% for non-autistic children with intellectual disability and 90% for
autistic children without intellectual disability [
152
]. Perhaps significant eye-movement
problems complicate eye-tracking use; poor oculomotor control relates to lower IQs for
both autistic and non-autistic children [153].
5.4. Nonverbal IQ Testing
Searching for strengths, especially among those with less language, may help them
to communicate and demonstrate their intelligence. The following section will argue that,
among IQ tests, minimally speaking autistic people tend to perform best on the Raven’s
(Colored) Progressive Matrices, followed, respectively, by the Leiter,
Stanford–Binet
, and
Weschler. A study recruited 30 autistic children ages six to 12 with minimal or no spoken
language attending schools for profoundly impaired autistic children, who could not
complete a standard IQ test with a verbal component (the Wechsler). Almost all could
complete a nonverbal IQ test that taps into many autistic people’s visual–spatial skills
(the Raven’s Colored Progressive Matrices), and related visual–spatial tasks (a visual
search task, and the Children’s Embedded Figures Test). Raven’s scores varied extremely
but the children scored an average IQ of 83, well outside of intellectual disability and
nearly within a standard deviation of typical. The autistic children performed faster than
Raven’s-matched typically developing children, with positive relationships among their
performance on the tests. These results indicate that many children potentially considered
“low-functioning” or “untestable” show autism-typical perceptual strengths; recognizing
them may help tap into their abilities or potential [
85
]. Indeed, tasks and interventions that
use adaptations such as visual supports help to unveil stronger understanding than the
expression of language among many minimally verbal autistic children [117,118].
Another study likewise found that autistic children who could not complete tests
with verbal IQ scores such as the Wechsler had a mean at the boundary of the normal
range of intellectual performance on both the original and revised nonverbal Leiter IQ
test, with strengths in visual processing [
154
]. Their findings parallel the mean IQ at
the border of the average range for autistic children on the Leiter at a time (1985) when
autism had much more restricted criteria, which surpassed that of the Wechsler [
155
].
Similar to Courchesne and colleagues’ results through the Raven’s test [
85
], Krueger [
139
]
found an extreme range of scores on the Leiter test among the 28 able to complete it in
a sample of 36 minimally speaking autistic children, with a child in both samples at the
90th percentile (equivalent of IQ of 120). Studies using the Leiter with autistic children
classified as intellectually disabled, “minimally verbal”, or untestable on IQ tests with
verbal components have consistently reported a mean score at least near the threshold of
the average range of intellectual ability: 65 to 72 [
124
,
154
156
]. Another study finding a
Educ. Sci. 2023,13, 106 9 of 20
mean in the intellectual disability range (66.5) on the classic Stanford–Binet Intelligence
Scales for autistic children reported a score fully within the average range (88) on the
Leiter [
157
]. Courchesne et al. [
85
] argue the superiority of the Raven’s over the Leiter for
most autistic people, with the mean they reported comparable to the much more verbal
children in Grondhuis and Mulick’s [157] sample.
Ravens’ greater appropriateness over even the Leiter, especially for autistic children
with the lowest language [
85
], may support the notion that most minimally speaking
autistic people qualify as “high-functioning” if defined by an IQ above 70. The Leiter
has resulted in higher scores for most autistic people over not only the Wechsler and
Stanford–Binet
tests but also the Kaufmann (KBIT-2) scale, even when compared with
peers with language impairments [
158
]. The Leiter and nonverbal IQ of the KBIT-2 almost
exactly matched means for autistic children (above 86), while the average verbal IQ on
the KBIT-2 again scored in the intellectual disability range (below 67: [
158
]. In turn, the
nonverbal IQ of the Kaufmann test resulted in higher scores for autistic children than the
Wechsler. Three quarters classified within the mild intellectual disability or below average
ranges on the Weschler compared with the same proportion scoring in the average or above
average ranges on the Kaufmann, with none in that highest range on the Weschler [
159
].
Timing constraints of the Weschler apparently contributed to the discrepancy in this study,
as autistic children in this study performed slowly on subtests other than Block Design [
159
].
That task taps into visuospatial abilities, which several studies have replicated as an area of
strength, particularly for autistic people with lower verbal IQ scores [
160
]. Carothers and
Taylor [
161
] analyzed additional problems of how the challenges of autism and the design
of the Wechsler may deflate IQ scores.
This analysis of IQ tests and their applications has shown that the IQ of autistic people
with language impairments is often underestimated. The publication date of the studies
using the Leiter nonverbal test covered above ranged from 1985 to 2022 [
124
,
139
,
154
156
].
In 1987, prevailing views in the autism field included that three quarters of autistic children
possessed intellectual disability and that intelligence tests did not underestimate autistic
children’s intelligence [
162
]. Teachers and especially parents often resisted [
163
], and
by the mid-2010s scientific research overturned [
164
,
165
] these beliefs as misconceptions.
This brought research full circle to the original accounts of autism, which declared the
cognitive potential of all autistic people and, at times, the inadequacy of standard measures
of intelligence or otherwise to assess their abilities [
27
,
166
,
167
]. Furthermore, the analysis
of claims that most autistic people have intellectual disability suffer from serious empirical
problems, such as the fact that most studies repeating this long-standing claim measured
development or adaptive behavior rather than intelligence [168,169].
Critics might point out that, in some minimally speaking people, measured expres-
sive [
78
] and even receptive language [
78
,
170
] does not relate to a nonverbal IQ yet this
means that an autistic person may have little language but a high IQ; families, schools,
and clinicians are likely underestimate their intelligence. Critics might also point out
that some minimally speaking autistic people test on the floor even on the Ravens [
86
].
However, tests may generally underestimate autistic people, who may choose to engage
little in them [
86
,
171
]. Adaptations such as for visual support [
118
], timing [
117
], and at-
tention [
172
] may help to produce higher scores. Autistic people generally do not perform
on command for audiences, which has accounted for why some have scored low on tasks
measuring supposed core deficits, such as in ‘theory of mind’ [173].
6. Recognizing the Self-Advocacy of Autistic People
As the Lancet Commission says, meeting autistic people’s needs requires our inclusion
and participation, and must consider our preferences [
1
]. However, the Lancet Commission
has little focus on self-advocacy, and few autistic people contributed to it [
74
]. Indeed,
autistic advocates and autistic researchers have lined up against “profound autism”, just as
we did against functioning labels [74,174,175].
Educ. Sci. 2023,13, 106 10 of 20
6.1. A Call for Calm
While the Commission reports that “profound autism” concept often means minimal
ability to self-advocate, this appears to discount the communication and self-advocacy of
autistic people limited by language. As the late nonspeaking autistic advocate Mel Baggs
said, “When people generally said to be incapable of communication find ways of making
clear what they do and don’t want through means other than words, this is self-advocacy”
(p. 223). Baggs clarified that self-advocacy includes what some refer to as behavioral
problems in response to abuse or violence against them [
176
]. For example, bidirectional
effects exist between autistic people’s externalizing behaviors and parental distress or criti-
cism, but they appear more driven by parents’ impacts on their children [
177
,
178
]. People
may tend to underestimate a trend for self-other emotional blurring in autistic people
associated with affective sharing in a variety of contexts that may lead to dysregulation
from overarousal. For example, autistic people experience heightened distress in response
to parents’ distress [
178
180
], or embarrassment [
181
] and anger [
182
] in reaction to other’s
such emotions outside the family. Emotional dysregulation may constitute a core feature of
autism [
183
], and anxiety overlaps with core traits in various domains [
184
]. Anxiety often
manifests atypically in autistic people, such as the possibly automatic “flight” or “freeze”
responses of shutdowns, avoidance, or withdrawal [
185
,
186
] and the “fight” responses of
meltdowns (externalizing frustration as aggression or irritability [
187
,
188
]). Non-autistic
people often misunderstand autistic people’s facial expressions [
189
,
190
], further compli-
cating an understanding of the emotions of a minimally verbal autistic person. Autistic
people’s relationships with teachers often fares better than with parents [
191
,
192
] (although
both may function well [
193
]), which may help to explain why autistics may demonstrate
more externalizing behavior around their parents than teachers [
194
196
]. Certainly, a
positive teacher-student relationship promotes academic engagement [197].
6.2. Relevance of Neurodiversity
Moreover, the claim of a limited ability to self-advocate for individuals labelled with
“profound autism” [
1
] might have unintended consequences for discrediting the relevance
of any advocacy autistic people make on their behalf. Autistic activists’ attempts to speak
on behalf of fellow autistics often encounter resistance. These include designations as either
“too autistic” to have insight or “not really autistic” and thus not representative because
of their articulate capacities. Similarly, critics have defined “functioning” in terms of an
ability to effectively communicate and autism advocacy as focused on “low-functioning”
individuals [198201].
Likewise, many classify the neurodiversity movement as only inclusive of or rel-
evant for “high-functioning” people, or—as the Lancet Commission hinted—as against
all treatment or mitigation of autistic people’s core struggles [
1
], despite evidence to the
contrary [
202
,
203
]. In 1992, autistic rehabilitation counselor Jim Sinclair co-founded the
neurodiversity movement that originated with autism, and galvanized autistic culture
and community through coordinating the first autistic-run autism organization: Autism
Network International (ANI; [
204
,
205
]). The founders all had speech delays as children,
such as Sinclair’s which was onset at age 12 [
204
], who noted “we had all fit descriptions of
‘low functioning’ autistic people when we were younger” [
205
] (p. 22). Sinclair [
206
] em-
phasizes developmental principles such as the importance that parents learn to speak their
child’s language for the growth and well-being of the family. This need finds widespread
agreement among self-identified autistic people and non-autistic people regardless of
neurodiversity views [202].
Perhaps some confusion about neurodiversity stems from the views of the main coiner
of the term neurodiversity, Judy Singer. As she stated regarding her thesis, the first time
neurodiversity appeared in print within the autistic community, “My thesis made clear
from the start that I was only advocating for people with high-functioning autism, (or
the Syndrome-formerly-known-as-Asperger) when I argued that Aspies should view our-
selves as a neurological minority, and that our focus should be on minority rights, not
Educ. Sci. 2023,13, 106 11 of 20
medicalization” [
207
] (p. 15). However, autistics active in the neurodiversity movement
have denounced “aspie supremacy” [
208
,
209
], acknowledge both difference and disabil-
ity [
210
,
211
], and advocate for supports that ameliorate aspects of autism that threaten
quality of life [
202
]. For example, the movement has prioritized AAC and meaningful com-
munication for all autistic people [
212
]. Organizations such as the Autistic Self Advocacy
Network promote services that particularly benefit people with the highest support needs,
such as home- and community-based services for people to live in their own home with
the support they need [213].
The tendency for greater support for the neurodiversity movement or opposition
to autism’s medical model among autistic people includes autistic people who are close
to other autistic people with intellectual disability or non-speaking autistic people [
214
].
Furthermore, both autistic and non-autistic people who are close to non-speaking autis-
tic people tend to have enhanced support for the notion that “Autistic people who can
communicate their needs should play a leading role in the development of intervention
goals” [
214
]. Similarly, parents’ acceptance of their child’s autism [
53
55
,
215
] and positive
emotions toward their autistic child [
216
] do not relate to their autistic child’s core traits
or support needs, or, if anything, acceptance grows as their child’s autism becomes more
apparent [
217
]. These studies suggest the potential for consensus in helping autistic people
to express their needs and listening to them when they do.
6.3. A Call for Unity
A unified autism diagnosis can allow practitioners to provide support at a personalized
level with the recognition of individual strengths and needs; developmental, psychiatric,
and medical co-occurring conditions; and demographic and social factors. Advocates have
more strength in numbers to find a common cause with people with other disabilities
for cross-disability systems change, so more people can live happy, safe, self-determined
lives in the community. As the Lancet Commission acknowledges, around the world
autistic adults often lack access to services, and biomarkers have not usefully helped
autistic people [
1
]. Instead, governments and research organizations can fund more applied
services research (including for adults), which may benefit many non-autistic disabled
people as well. Research has identified interventions to increase self-determination in
high school for students with intellectual disabilities [
218
,
219
], which can be adapted as
needed for autistic people with intellectual disabilities. Interviews can creatively include
minimally speaking autistic youth where possible to discuss what they would like in their
future, such as one with an IQ of 33 [
220
]. With the right support (perhaps consultation
with organizations such as ASAN), many parents may elect for supported decision-making
rather than guardianship, to help autistic people with the highest support needs make
choices about their lives. Indeed, the Commission advocates for “shared decision-making
that takes into account patient and family preferences and resources” (p. 283) [
1
], yet
its rhetoric about “profound autism” might inadvertently encourage parents to conserve
their children.
With systems change more people can live like Joaquin, a minimally speaking autistic
man regarded as having significant intellectual disability, with a history of aggression,
self-injury, and seizures. He lives in his own house in the community with around-the-
clock paid support staff, friendly neighbors who accept him, and chores and walks in the
community he enjoys. His nearby sister, Diana Pastora Carson, understands his limited
speech that may seem meaningless to a stranger, and together they advocated to get him
out of an institution [221].
7. Conclusions
Let us always consider the transactional dynamics of communication and have humil-
ity when we do not understand others’ communicative acts. We also need to have humility
about the vague terms that define “profound autism” and our ability to measure capacities
and needs, remembering that the choice of assessment (such as an inappropriate IQ test
Educ. Sci. 2023,13, 106 12 of 20
with verbal components) may have serious consequences for the individual. Indeed, the
implementation of “profound autism” could backfire into service providers only offering
services to autistic people who meet that designation, applied conservatively (restrictively)
in definition and measurement (e.g., IQ below 50 on the Raven’s). Overall, we must strive
for inclusion in society and not use terms to promote segregation.
Funding: This research received no external funding.
Institutional Review Board Statement: Not applicable.
Informed Consent Statement: Not applicable.
Data Availability Statement: Not applicable.
Acknowledgments:
The author would like to thank Shannon Des Roches Rosa, Kristen Bottema-
Beutel, Ruth Kapp, Amy Pearson, and Kim Bard for their comments on earlier versions of the article.
He would like to thank Guest Editor Amanda A. Webster and reviewers for their helpful comments.
Conflicts of Interest: The author declares no conflict of interest.
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... Second, GPs tended to adhere to an outdated and oversimplified idea of a linear autism spectrum which remains common place across medical, healthcare, education disciplines and broader society (Chapman & Veit, 2020;Darazsdi & Bialka, 2023;Fennell & Johnson, 2022a;Kapp, 2023;Pukki et al., 2022). This perspective was presented as binary, dividing autistic people into two categories: severely affected or mildly affected. ...
... The outdated and problematic nature of using binary functioning labels to understand and describe autistic people and their experiences is well documented in recent literature (ASAN, 2021;Bradshaw et al., 2021;Burgess, 2022;Chapman & Veit, 2020;Darazsdi & Bialka, 2023;Fennell & Johnson, 2022a;Hayworth, 2021;Hooge, 2019;Kapp, 2023;Kapp & Ne'eman, 2020;Kat, 2019;Lynch, 2019;Pukki et al., 2022Pukki et al., , 2022Seers & Hogg, 2021;Wolfe, 2022). For example, a recent review on the future of clinical research on autism deconstructed problems with autism labels, including high/low functioning labels, as well as the communicative and cognitive capacities of minimally-speaking autistic people (Kapp, 2023). ...
... The outdated and problematic nature of using binary functioning labels to understand and describe autistic people and their experiences is well documented in recent literature (ASAN, 2021;Bradshaw et al., 2021;Burgess, 2022;Chapman & Veit, 2020;Darazsdi & Bialka, 2023;Fennell & Johnson, 2022a;Hayworth, 2021;Hooge, 2019;Kapp, 2023;Kapp & Ne'eman, 2020;Kat, 2019;Lynch, 2019;Pukki et al., 2022Pukki et al., , 2022Seers & Hogg, 2021;Wolfe, 2022). For example, a recent review on the future of clinical research on autism deconstructed problems with autism labels, including high/low functioning labels, as well as the communicative and cognitive capacities of minimally-speaking autistic people (Kapp, 2023). These problems included oversimplifying the highly heterogenous nature of autistic people, underestimating cognitive or communicative abilities leading to inappropriate or limiting supports, perpetuating stigma leading to lower expectations, exclusion, segregation, lack of scientific validity as traits and abilities vary widely, and impacting how autistic people view themselves and their ability to advocate for their needs, potentially discouraging selfadvocacy or pressure to conform (Kapp, 2023). ...
Thesis
Full-text available
Background: Studies from around the world have shown that autistic adults often experience multiple barriers to accessing healthcare and report more barriers to healthcare than non-autistic adults. Autistic adults have also consistently reported experiencing challenges in both physical and mental well-being, coupled with a diminished life expectancy when contrasted with their non-autistic counterparts. Yet, we know little about the experiences of Australian autistic adults in general practice settings. Aim: To develop an in-depth understanding of the factors contributing to the care that autistic adults receive in Australian general practice settings – from the perspectives of autistic adults themselves, their supporters, and general practitioners (GPs). Methods: I completed in-depth semi-structured interviews with 34 autistic adults, four supporters and 15 GPs in their preferred method (i.e., Zoom, telephone, email). Most autistic adult participants were white (n = 28; 82%), female (n = 24; 70%) and ranged in age from 26 to 73 years (M = 41.93, SD = 11.48). Most supporters were white (n = 3; 75%) and all were women (n = 4; 100%), ranging in age from 51 to 72 years (M = 61, SD = 7.8). Most GP participants were white (n = 12; 80%), female (n = 11; 73%), ranged in age from 28 to 60 years (M = 45.4, SD = 7.6), had worked as a GP for 5 – 25 years, and had not received any formal autism specific training prior to obtaining their primary qualification (n = 10; 66%), or post obtaining their primary qualification (n = 11; 73%). I collaborated with a ‘Community Council’ of ten Australian autistic adults from a range of diverse age, gender, employment, and educational backgrounds in the development of the research aim, interview questions, and participant-facing materials. During the interviews, autistic and supporter participants were asked about six areas: GP consultation experiences, waiting at the GP clinic, disclosure of an autism diagnosis and seeking an [autism] assessment referral, accessing GP services during COVID-19 and what participants want GPs to know about autism and do differently. During interviews with GPs, I also asked about their knowledge and perceptions of, and attitudes towards, autistic people; the clinic environment; diagnosing autism; impact of COVID-19 restrictions; and GP education and training. I analysed the interview transcripts using reflexive thematic analysis. I also used a neuro-affirming and critical autism studies approach to inform my analysis, as well as an epistemic justice framework to preface my conclusions. Results: My thesis comprises four distinct research studies aimed at elucidating the general practice experiences of autistic adults. The first study (Chapter 2) was a systematic literature review to delineate barriers and facilitators to healthcare access for this population. I identified a range of challenges encompassing provider-level factors including inadequate knowledge and biased attitudes, and system-level issues such as limited accessibility. Additionally, I highlighted the scarcity of evidence-based health supports tailored to autistic adults. These findings were confirmed and extended by the results of my empirical work (Chapters 5 – 7). In Chapter 5, I present the results from the interview study on GPs’ perceptions of autistic people and how these perceptions impact healthcare interactions, as reported by autistic adults, their supporters, and GPs. In Chapter 6, I examine how patient-provider interactions in primary care settings affect autistic patients’ physical health specifically. Finally, in Chapter 7, I further interrogate the responses of autistic adults, their supporters and GPs to understand autistic experiences of seeking care in general practice. I unveiled pervasive negative interactions and outcomes experienced by autistic adults. I also revealed a notable lack of contemporary knowledge and subconscious biases among GPs about autism and being autistic, which appeared to impact healthcare provision. Similarly, supporters exhibited gaps in understanding, exacerbating the challenges faced by autistic adults in general practice settings. Limited contemporary understandings of ‘autism’ and prejudiced attitudes led to undiagnosed or misdiagnosed physical and mental health conditions, causing medical gaslighting and iatrogenesis. Autistic adults described feeling objectified and disempowered as a result of these issues when interacting with GPs in Australian general practice settings. Conclusion: My research challenges medical interpretations of ‘autism’ and demonstrates epistemic violence in the Australian general practice experiences of autistic adults. Pernicious ignorance and epistemicide of ‘autism’ interpretations, coupled with knowledge-based epistemic violence within healthcare, including general practice, result in testimonial silencing and smothering. To ensure the healthcare needs, preferences, and rights of autistic adults are upheld and that epistemic justice is promoted, I advocate for epistemic respect and recognition through contemporaneous neuro-affirming autistic-led education and training for general practice staff and medical students. My findings underscore the imperative for comprehensive reforms in healthcare practices and provider education and training to bridge the existing gaps and cater effectively to the healthcare needs and rights of autistic adults.
... Throughout history, people have been misled by myths and misconceptions regarding the causes and treatments for ASD (AlBatti et al., 2022); (Ghirardi et al., 2021). According to Kapp (2023), people believe that witchcraft, sorcery, bad spirits, and God's punishment for family sins are all causes of autism. Kapp (2023) and Morris-Rosendahl and Crocq (2020) showed that people with impairments, particularly those exhibiting symptoms of high-functioning autism (HFA), were taunted, ridiculed, and excluded from engaging with others in various aspects of society. ...
... According to Kapp (2023), people believe that witchcraft, sorcery, bad spirits, and God's punishment for family sins are all causes of autism. Kapp (2023) and Morris-Rosendahl and Crocq (2020) showed that people with impairments, particularly those exhibiting symptoms of high-functioning autism (HFA), were taunted, ridiculed, and excluded from engaging with others in various aspects of society. This discrimination may have stemmed from the limited information available to all people about how individuals with ASD behave, interact, and socialize with others and among themselves in various societal settings (Ghirardi et al., 2021;Kapp, 2023;Porter et al., 2023). ...
... Kapp (2023) and Morris-Rosendahl and Crocq (2020) showed that people with impairments, particularly those exhibiting symptoms of high-functioning autism (HFA), were taunted, ridiculed, and excluded from engaging with others in various aspects of society. This discrimination may have stemmed from the limited information available to all people about how individuals with ASD behave, interact, and socialize with others and among themselves in various societal settings (Ghirardi et al., 2021;Kapp, 2023;Porter et al., 2023). ...