Next Article in Journal
Effective Music Teachers and Effective Music Teaching Today: A Systematic Review
Previous Article in Journal
How Sustainable Are Claims about Evidence-Based Content in Australian Courses for Preparing Special Educators?
Previous Article in Special Issue
Creating Inclusive Classrooms for Highly Dysregulated Students: What Can We Learn from Existing Literature?
Order Article Reprints
Font Type:
Arial Georgia Verdana
Font Size:
Aa Aa Aa
Line Spacing:
Column Width:

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

Department of Psychology, University of Portsmouth, King Henry Building, King Henry I Street, Portsmouth PO1 2DY, UK
Educ. Sci. 2023, 13(2), 106;
Received: 4 October 2022 / Revised: 12 January 2023 / Accepted: 16 January 2023 / Published: 19 January 2023


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.

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 administrative 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 [8,9,10,11,12,13,14], 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 [8,9,10]. 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” [11,12,13,14,17,18,19], 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].
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- dimensionality [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]. Concerns remain today that “profound autism” could be used to promote segregation, while lacking validity.
This evidence-based review argues against reductionist functioning terms and “profound autism” for reasons that overlap with the Lancet Commission’s repeated acknowledgements (e.g., of autistic people’s “heterogeneity” and “potential for change”) [1]. It questions “profound autism”’s limited scientific validity and feasibility in everyday practice. 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 suggests 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:
Are functioning labels for autism valid?
Is the intelligence of autistic people with lower verbal IQs, especially autistic people with intellectual disability according to tests with verbal components, often underestimated?
Similarly, on which IQ tests do such autistic people tend to fare best?
Overall, is the communication of autistic people with minimal speech underestimated?

2.2. Design

The review initially followed the following inclusion strategy [29,30]:
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.
  • Papers cited in relevant articles within these journals and time span.
  • Papers citing relevant articles within these journals and time span.
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”), 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:
The Lancet Commission and academic and community sources relevant to a critique of its:
  • scientific and social validity
  • feasibility
An updated search related to:
  • “minimally verbal” autism
  • any literature building from the previously identified sources.
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 review [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 underestimate 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 modifications [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 Commission 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 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 assignment 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 [44,45,46,47,48,49,50,51,52].

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 development 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 autistic people’s functioning, such as the benefits from parental acceptance of autism [53,54,55,56,57] and inclusive educational settings [58,59,60,61,62,63,64,65,66,67]. Moreover, peer attitudes [11,12,13] and a services drop-off after high/secondary school [68,69,70,71] 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 Neurodevelopmental 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 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 individuals [76]. Instead, it describes co-occurring intellectual disability or structural language impairment [1,76], or (implicitly) apraxia of speech (motor problems with speech production) [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 [79,80,81,82,83]. 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 classification 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 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 [93,94,95,96,97,98], including those who remain minimally speaking well into childhood [85]. These strengths related to greater core autistic traits [99,100,101], 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 allowing 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 [107,108,109]. 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. Studies 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 impression 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, request, 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].

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 speaking 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 manifestations [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 adolescents 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 [127,128,129,130]. 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 [131,132,133]. 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 functioning of autistic youth, including with intellectual disabilities, beyond the effects of demographic and individual characteristics [59]. The Lancet Commission likewise recognized and documented the evidence base of intellectual, educational, academic, and other improvements from educational inclusion for autistic children and adolescents of various abilities [1,114,115,116,117]. 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 [60,61,62,139,140]. 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 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 [146,147,148]. 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 [124,154,155,156]. Another study finding a 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 [124,139,154,155,156]. 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 expressive [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 attention [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].

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 criticism, 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 [178,179,180], 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 complicating 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 [194,195,196]. 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 [198,199,200,201].
Likewise, many classify the neurodiversity movement as only inclusive of or relevant 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] emphasizes 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 ourselves as a neurological minority, and that our focus should be on minority rights, not medicalization” [207] (p. 15). However, autistics active in the neurodiversity movement have denounced “aspie supremacy” [208,209], acknowledge both difference and disability [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 communication 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 autistic 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 [53,54,55,215] 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 humility 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 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.


This research received no external funding.

Institutional Review Board Statement

Not applicable.

Informed Consent Statement

Not applicable.

Data Availability Statement

Not applicable.


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.


  1. Lord, C.; Charman, T.; Havdahl, A.; Carbone, P.; Anagnostou, E.; Boyd, B.; Carr, T.; de Vries, P.J.; Dissanayake, C.; Divan, G.; et al. The Lancet Commission on the future of care and clinical research in autism. Lancet 2022, 399, 271–334. [Google Scholar] [CrossRef] [PubMed]
  2. van Rentergem, J.A.A.; Deserno, M.K.; Geurts, H.M. Validation strategies for subtypes in psychiatry: A systematic review of research on autism spectrum disorder. Clin. Psychol. Rev. 2021, 87, 102033. [Google Scholar] [CrossRef] [PubMed]
  3. Coleman, M.; Gillberg, C. The Autisms; Oxford University Press: Oxford, UK, 2012. [Google Scholar]
  4. Waterhouse, L.; Gillberg, C. Why autism must be taken apart. J. Autism Dev. Disord. 2014, 44, 1788–1792. [Google Scholar] [CrossRef] [PubMed]
  5. Waterhouse, L. Heterogeneity thwarts autism explanatory power: A proposal for endophenotypes. Front. Psychiatry 2022, 13, 947653. [Google Scholar] [CrossRef] [PubMed]
  6. Sameroff, A. A unified theory of development: A dialectic integration of nature and nurture. Child Dev. 2010, 81, 6–22. [Google Scholar] [CrossRef][Green Version]
  7. Swearer, S.M.; Hymel, S. Understanding the psychology of bullying: Moving toward a social-ecological diathesis–stress model. Am. Psychol. 2015, 70, 344. [Google Scholar] [CrossRef][Green Version]
  8. Jones, A.P.; Frederickson, N. Multi-informant predictors of social inclusion for students with autism spectrum disorders attending mainstream school. J. Autism Dev. Disord. 2010, 40, 1094–1103. [Google Scholar] [CrossRef][Green Version]
  9. Scheeren, A.M.; Koot, H.M.; Begeer, S. Social interaction style of children and adolescents with high-functioning autism spectrum disorder. J. Autism Dev. Disord. 2012, 42, 2046–2055. [Google Scholar] [CrossRef][Green Version]
  10. Sreckovic, M.A.; Brunsting, N.C.; Able, H. Victimization of students with autism spectrum disorder: A review of prevalence and risk factors. Res. Autism Spectr. Disord. 2014, 8, 1155–1172. [Google Scholar] [CrossRef]
  11. Libster, N.; Knox, A.; Engin, S.; Geschwind, D.; Parish-Morris, J.; Kasari, C. Personal victimization experiences of autistic and non-autistic children. Mol. Autism 2022, 13, 51. [Google Scholar] [CrossRef]
  12. Rowley, E.; Chandler, S.; Baird, G.; Simonoff, E.; Pickles, A.; Loucas, T.; Charman, T. The experience of friendship, victimization and bullying in children with an autism spectrum disorder: Associations with child characteristics and school placement. Res. Autism Spectr. Disord. 2012, 6, 1126–1134. [Google Scholar] [CrossRef]
  13. Shtayermman, O. Peer victimization in adolescents and young adults diagnosed with Asperger’s syndrome: A link to depressive symptomatology, anxiety symptomatology and suicidal ideation. Issues Compr. Pediatr. Bursing 2007, 30, 87–107. [Google Scholar] [CrossRef] [PubMed]
  14. Shtayermman, O. An exploratory study of the stigma associated with a diagnosis of Asperger’s syndrome: The mental health impact on the adolescents and young adults diagnosed with a disability with a social nature. J. Hum. Behav. Soc. Environ. 2009, 19, 298–313. [Google Scholar] [CrossRef]
  15. Wing, L.; Gould, J. Severe impairments of social interaction and associated abnormalities in children: Epidemiology and classification. J. Autism Dev. Disord. 1979, 9, 11–29. [Google Scholar] [CrossRef] [PubMed]
  16. Zheng, S.; Kaat, A.; Farmer, C.; Kanne, S.; Georgiades, S.; Lord, C.; Esler, A.; Bishop, S.L. Extracting latent subdimensions of social communication: A cross-measure factor analysis. J. Am. Acad. Child Adolesc. Psychiatry 2021, 60, 768–782. [Google Scholar] [CrossRef] [PubMed]
  17. Feldman, D.B.; Crandall, C.S. Dimensions of mental illness stigma: What about mental illness causes social rejection? J. Soc. Clin. Psychol. 2007, 26, 137–154. [Google Scholar] [CrossRef]
  18. Hinshaw, S.P.; Stier, A. Stigma as related to mental disorders. Annu. Rev. Clin. Psychol. 2008, 4, 367–393. [Google Scholar] [CrossRef][Green Version]
  19. Weiner, B. On sin versus sickness: A theory of perceived responsibility and social motivation. Am. Psychol. 1993, 48, 957–965. [Google Scholar] [CrossRef]
  20. Kuusikko, S.; Pollock-Wurman, R.; Jussila, K.; Carter, A.S.; Mattila, M.L.; Ebeling, H.; Pauls, D.L.; Moilanen, I. Social anxiety in high-functioning children and adolescents with autism and Asperger syndrome. J. Autism Dev. Disord. 2008, 38, 1697–1709. [Google Scholar] [CrossRef]
  21. Shattuck, P.T.; Seltzer, M.M.; Greenberg, J.S.; Orsmond, G.I.; Bolt, D.; Kring, S.; Lounds, J.; Lord, C. Change in autism symptoms and maladaptive behaviors in adolescents and adults with an autism spectrum disorder. J. Autism Dev. Disord. 2007, 37, 1735–1747. [Google Scholar] [CrossRef]
  22. Chapman, L.; Rose, K.; Hull, L.; Mandy, W. “I want to fit in… but I don’t want to change myself fundamentally”: A qualitative exploration of the relationship between masking and mental health for autistic teenagers. Res. Autism Spectr. Disord. 2022, 99, 102069. [Google Scholar] [CrossRef]
  23. Pearson, A.; Rose, K.; Rees, J. ‘I felt like I deserved it because I was autistic’: Understanding the impact of interpersonal victimisation in the lives of autistic people. Autism 2022. [Google Scholar] [CrossRef] [PubMed]
  24. Wing, L. Differentiation of retardation and autism from specific communication disorders. Child Care Health Dev. 1979, 5, 57–68. [Google Scholar] [PubMed]
  25. Wing, L. Reflections on opening Pandora’s box. J. Autism Dev. Disord. 2005, 35, 197–203. [Google Scholar] [CrossRef] [PubMed]
  26. Silberman, S. Neurotribes: The Legacy of Autism and How to Think Smarter about People Who Think Differently; Atlantic Books: London, UK, 2017. [Google Scholar]
  27. Kanner, L. Autistic disturbances of affective contact. Nerv. Child 1943, 2, 217–250. [Google Scholar]
  28. Grant, M.J.; Booth, A. A typology of reviews: An analysis of 14 review types and associated methodologies. Health Inf. Libr. J. 2009, 26, 91–108. [Google Scholar] [CrossRef]
  29. Greenhalgh, T.; Wieringa, S. Is it time to drop the ‘knowledge translation’metaphor? A critical litera-ture review. J. R. Soc. Med. 2011, 104, 501–509. [Google Scholar] [CrossRef][Green Version]
  30. Pillay, I. The impact of inequality and COVID-19 on education and career planning for South African children of rural and low-socioeconomic backgrounds. Afr. J. Career Dev. 2021, 3, 7. [Google Scholar] [CrossRef]
  31. Maree, J.G. Rekindling hope and purpose in resource-constrained areas during COVID-19: The merits of counselling for career construction. S. Afr. J. Sci. 2022, 118, 1–7. [Google Scholar] [CrossRef]
  32. Eigsti, I.M.; Fein, D.; Larson, C. Editorial Perspective: Another look at ‘optimal outcome’in autism spectrum disorder. J. Child Psychol. Psychiatry 2022, 64, 332–334. [Google Scholar] [CrossRef]
  33. Simonoff, E.; Kent, R.; Stringer, D.; Lord, C.; Briskman, J.; Lukito, S.; Pickles, A.; Charman, T.; Baird, G. Trajectories in symptoms of autism and cognitive ability in autism from childhood to adult life: Findings from a longitudinal epidemiological cohort. J. Am. Acad. Child Adolesc. Psychiatry 2019, 59, 1342–1352. [Google Scholar] [CrossRef] [PubMed]
  34. Maltman, N.; DaWalt, L.S.; Hong, J.; Mailick, M. Brief report: Socioeconomic factors associated with minimally verbal status in individuals with ASD. J. Autism Dev. Disord. 2021, 51, 2139–2145. [Google Scholar] [CrossRef]
  35. Kapp, S.K. The Strengths of Speech Delay: Getting a Grip on the Sensory-Motor Complexity of Autism. 2022; unpublished manuscript. [Google Scholar]
  36. Ratto, A.B.; Bascom, J.; daVanport, S.; Strang, J.F.; Anthony, L.G.; Verbalis, A.; Pugliese, C.; Nadwodny, N.; Brown, L.X.; Cruz, M.; et al. Centering the Inner Experience of Autism: Development of the Self-Assessment of Autistic Traits. Autism Adulthood 2022. [Google Scholar] [CrossRef]
  37. Haigh, S.M. Variable sensory perception in autism. Eur. J. Neurosci. 2018, 47, 602–609. [Google Scholar] [CrossRef] [PubMed]
  38. Geurts, H.M.; Grasman, R.P.; Verté, S.; Oosterlaan, J.; Roeyers, H.; van Kammen, S.M.; Sergeant, J.A. Intra-individual variability in ADHD, autism spectrum disorders and Tourette’s syndrome. Neuropsychologia 2008, 46, 3030–3041. [Google Scholar] [CrossRef]
  39. Robertson, A.E.; Simmons, D.R. The sensory experiences of adults with autism spectrum disorder: A qualitative analysis. Perception 2015, 44, 569–586. [Google Scholar] [CrossRef][Green Version]
  40. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 5th ed.; American Psychiatric Publishing: Arlington, VA, USA, 2013. [Google Scholar]
  41. Bal, V.H.; Katz, T.; Bishop, S.L.; Krasileva, K. Understanding definitions of minimally verbal across instruments: Evidence for subgroups within minimally verbal children and adolescents with autism spectrum disorder. J. Child Psychol. Psychiatry 2016, 57, 1424–1433. [Google Scholar] [CrossRef]
  42. Estes, A.; Rivera, V.; Bryan, M.; Cali, P.; Dawson, G. Discrepancies between academic achievement and intellectual ability in higher-functioning school-aged children with autism spectrum disorder. J. Autism Dev. Disord. 2011, 41, 1044–1052. [Google Scholar] [CrossRef]
  43. Jones, C.R.; Happé, F.; Golden, H.; Marsden, A.J.; Tregay, J.; Simonoff, E.; Pickles, A.; Baird, G.; Charman, T. Reading and arithmetic in adolescents with autism spectrum disorders: Peaks and dips in attainment. Neuropsychology 2009, 23, 718–728. [Google Scholar] [CrossRef][Green Version]
  44. Alvares, G.A.; Bebbington, K.; Cleary, D.; Evans, K.; Glasson, E.J.; Maybery, M.T.; Pillar, S.; Uljarević, M.; Varcin, K.; Wray, J.; et al. The misnomer of ‘high functioning autism’: Intelligence is an imprecise predictor of functional abilities at diagnosis. Autism 2020, 24, 221–232. [Google Scholar] [CrossRef]
  45. Balfe, M.; Tantam, D. A descriptive social and health profile of a community sample of adults and adolescents with Asperger syndrome. BMC Res. Notes 2010, 3, 300–306. [Google Scholar] [CrossRef] [PubMed]
  46. Kanne, S.M.; Gerber, A.J.; Quirmbach, L.M.; Sparrow, S.S.; Cicchetti, D.V.; Saulnier, C.A. The role of adaptive behavior in autism spectrum disorders: Implications for functional outcome. J. Autism Dev. Disord. 2011, 41, 1007–1018. [Google Scholar] [CrossRef] [PubMed]
  47. Klin, A.; Saulnier, C.A.; Sparrow, S.S.; Cicchetti, D.V.; Volkmar, F.R.; Lord, C. Social and communication abilities and disabilities in higher functioning individuals with autism spectrum disorders: The Vineland and the ADOS. J. Autism Dev. Disord. 2007, 37, 748–759. [Google Scholar] [CrossRef] [PubMed]
  48. Lee, H.J.; Park, H.R. An integrated literature review on the adaptive behavior of individuals with Asperger syndrome. Remedial Spec. Educ. 2007, 28, 132–139. [Google Scholar]
  49. Levy, A.; Perry, A. Outcomes in adolescents and adults with autism: A review of the literature. Res. Autism Spectr. Disord. 2011, 5, 1271–1282. [Google Scholar] [CrossRef]
  50. Myles, B.S.; Lee, H.J.; Smith, S.M.; Tien, K.-C.; Chou, Y.-C.; Swanson, T.C.; Hudson, J. A large-scale study of the characteristics of Asperger syndrome. Educ. Train. Dev. Disabil. 2007, 42, 448–459. [Google Scholar]
  51. Saulnier, C.A.; Klin, A. Brief report: Social and communication abilities and disabilities in higher functioning individuals with autism and Asperger syndrome. J. Autism Dev. Disord. 2007, 37, 788–793. [Google Scholar] [CrossRef]
  52. Volker, M.A.; Lopata, C.; Smerbeck, A.M.; Knoll, V.A.; Thomeer, M.L.; Toomey, J.A.; Rodgers, J.D. BASC-2 PRS profiles for students with high-functioning autism spectrum disorders. J. Autism Dev. Disord. 2010, 40, 188–199. [Google Scholar] [CrossRef]
  53. Hutman, T.; Siller, M.; Sigman, M. Mothers’ narratives regarding their child with autism predict maternal synchronous behavior during play. J. Child Psychol. Psychiatry 2009, 50, 1255–1263. [Google Scholar] [CrossRef]
  54. Oppenheim, D.; Koren-Karie, N.; Dolev, S.; Yirmiya, N. Maternal insightfulness and resolution of the diagnosis are associated with secure attachment in preschoolers with autism spectrum disorders. Child Dev. 2009, 80, 519–527. [Google Scholar] [CrossRef]
  55. Wachtel, K.; Carter, A.S. Reaction to diagnosis and parenting styles among mothers of young children with ASDs. Autism 2008, 12, 575–594. [Google Scholar] [CrossRef] [PubMed]
  56. Dolev, S.; Sher-Censor, E.; Baransi, N.; Amara, K.; Said, M. Resolution of the child’s ASD diagnosis among Arab–Israeli mothers: Associations with maternal sensitivity and wellbeing. Res. Autism Spectr. Disord. 2016, 21, 73–83. [Google Scholar] [CrossRef]
  57. Oppenheim, D.; Koren-Karie, N.; Dolev, S.; Yirmiya, N. Maternal sensitivity mediates the link between maternal insightfulness/resolution and child–mother attachment: The case of children with Autism Spectrum Disorder. Attach. Hum. Dev. 2012, 14, 567–584. [Google Scholar] [CrossRef]
  58. Nahmias, A.S.; Kase, C.; Mandell, D.S. Comparing cognitive outcomes among children with autism spectrum disorders receiving community-based early intervention in one of three placements. Autism 2014, 18, 311–320. [Google Scholar] [CrossRef] [PubMed]
  59. Woodman, A.C.; Smith, L.E.; Greenberg, J.S.; Mailick, M.R. Contextual factors predict patterns of change in functioning over 10 years among adolescents and adults with autism spectrum disorders. J. Autism Dev. Disord. 2016, 46, 176–189. [Google Scholar] [CrossRef] [PubMed][Green Version]
  60. Kurth, J.A.; Mastergeorge, A.M. Academic and cognitive profiles of students with autism: Implications for classroom practice and placement. Int. J. Spec. Educ. 2010, 25, 8–14. [Google Scholar]
  61. Kurth, J.; Mastergeorge, A.M. Impact of setting and instructional context for adolescents with autism. J. Spec. Educ. 2012, 46, 36–48. [Google Scholar] [CrossRef][Green Version]
  62. Kurth, J.; Mastergeorge, A.M. Individual education plan goals and services for adolescents with autism: Impact of age and educational setting. J. Spec. Educ. 2010, 44, 146–160. [Google Scholar] [CrossRef][Green Version]
  63. Dolev, S.; Oppenheim, D.; Koren-Karie, N.; Yirmiya, N. Early attachment and maternal insightfulness predict educational placement of children with autism. Res. Autism Spectr. Disord. 2014, 8, 958–967. [Google Scholar] [CrossRef]
  64. Magnus, P.; Birke, C.; Vejrup, K.; Haugan, A.; Alsaker, E.; Daltveit, A.K.; Handal, M.; Haugen, M.; Høiseth, G.; Knudsen, G.P.; et al. Cohort profile update: The Norwegian mother and child cohort study (MoBa). Int. J. Epidemiol. 2016, 45, 382–388. [Google Scholar] [CrossRef][Green Version]
  65. Gal, E.; Selanikyo, E.; Bar-Haim Erez, A.; Katz, N. Integration in the vocational world: How does it affect quality of life and subjective well-being of young adults with ASD. Int. J. Environ. Res. Public Health 2015, 12, 10820–10832. [Google Scholar] [CrossRef] [PubMed]
  66. Kim, S.H.; Bal, V.H.; Lord, C. Longitudinal follow-up of academic achievement in children with autism from age 2 to 18. J. Child Psychol. Psychiatry 2018, 59, 258–267. [Google Scholar] [CrossRef] [PubMed]
  67. Jones, R.M.; Pickles, A.; Lord, C. Evaluating the quality of peer interactions in children and adolescents with autism with the Penn Interactive Peer Play Scale (PIPPS). Mol. Autism 2017, 8, 28. [Google Scholar] [CrossRef][Green Version]
  68. Shattuck, P.T.; Wagner, M.; Narendorf, S.; Sterzing, P.; Hensley, M. Post–high school service use among young adults with an autism spectrum disorder. Arch. Pediatr. Adolesc. Med. 2011, 165, 141–146. [Google Scholar] [CrossRef] [PubMed]
  69. Taylor, J.L.; Seltzer, M.M. Employment and post-secondary educational activities for young adults with autism spectrum disorders during the transition to adulthood. J. Autism Dev. Disord. 2011, 41, 566–574. [Google Scholar] [CrossRef] [PubMed][Green Version]
  70. Taylor, J.L.; Seltzer, M.M. Changes in the autism behavioral phenotype during the transition to adulthood. J. Autism Dev. Disord. 2010, 40, 1431–1446. [Google Scholar] [CrossRef][Green Version]
  71. Taylor, J.L.; Seltzer, M.M. Changes in the mother–child relationship during the transition to adulthood for youth with autism spectrum disorders. J. Autism Dev. Disord. 2011, 41, 1397–1410. [Google Scholar] [CrossRef][Green Version]
  72. Moore, M.J. On the Spectrum: Autistics, Functioning, and Care. Ph.D. Thesis, UC Santa Cruz, Santa Cruz, CA, USA, 2014. [Google Scholar]
  73. Kapp, S.K.; Ne’eman, A. Lobbying autism’s diagnostic revision in the DSM-5. In Autistic Community and the Neurodiversity Movement; Palgrave Macmillan: Singapore, 2020; pp. 167–194. [Google Scholar]
  74. Lord, C.; Petkova, E.; Hus, V.; Gan, W.; Lu, F.; Martin, D.M.; Ousley, O.; Guy, L.; Bernier, R.; Gerdts, J.; et al. A multisite study of the clinical diagnosis of different autism spectrum disorders. Arch. Gen. Psychiatry 2012, 69, 306–313. [Google Scholar] [CrossRef]
  75. Anderson, J.; Birch-Hanger, E.; Burn, G.; Dodevska, G.; Fitzgerald, J.; Harrison, M.; McVilly, K.; Moore, R.; Staples, D.; Thomas, S.; et al. The Scope-University of Melbourne Partnership Submission to the Senate Select Committee on Autism; The University of Melbourne: Parkville, VIC, Australia, 2020. [Google Scholar]
  76. Pukki, H.; Bettin, J.; Outlaw, A.G.; Hennessy, J.; Brook, K.; Dekker, M.; Doherty, M.; Shaw, S.C.; Bervoets, J.; Rudolph, S.; et al. Autistic perspectives on the future of clinical autism research. Autism Adulthood 2022, 4, 93–101. [Google Scholar] [CrossRef]
  77. Shriberg, L.; Strand, E.; Fourakis, M.; Jakielski, K.J.; Hall, S.D.; Karlsson, H.B.; Mabie, H.L.; McSweeny, J.L.; Tilkens, C.M.; Wilson, D.L. A diagnostic marker to discriminate childhood apraxia of speech from speech delay: I. Development and description of the pause marker. J. Speech Lang. Hear. Res. 2017, 60, S1096–S1117. [Google Scholar] [CrossRef][Green Version]
  78. Chenausky, K.; Brignell, A.; Morgan, A.; Tager-Flusberg, H. Motor speech impairment predicts expressive language in minimally verbal, but not low verbal, individuals with autism spectrum disorder. Autism Dev. Lang. Impair. 2019, 4, 2396941519856333. [Google Scholar] [CrossRef] [PubMed]
  79. Hill, T.L.; Gray, S.A.O.; Kamps, J.L.; Varela, R.E. Age and adaptive functioning in children and adolescents with ASD: The effects of intellectual functioning and ASD symptom severity. J. Autism Dev. Disord. 2015, 45, 4074–4083. [Google Scholar] [CrossRef] [PubMed][Green Version]
  80. Yang, S.; Paynter, J.M.; Gilmore, L. Vineland Adaptive Behavior Scales: II profile of young children with autism spectrum disorder. J. Autism Dev. Disord. 2016, 46, 64–73. [Google Scholar] [CrossRef] [PubMed][Green Version]
  81. Franchini, M.; Zöller, D.; Gentaz, E.; Glaser, B.; Wood de Wilde, H.; Kojovic, N.; Eliez, S.; Schaer, M. Early adaptive functioning trajectories in preschoolers with autism spectrum disorders. J. Pediatr. Psychol. 2018, 43, 800–813. [Google Scholar] [CrossRef]
  82. Pathak, M.; Bennett, A.; Shui, A.M. Correlates of adaptive behavior profiles in a large cohort of children with autism: The Autism Speaks Autism Treatment Network registry data. Autism 2019, 23, 87–99. [Google Scholar] [CrossRef] [PubMed]
  83. Hodge, M.A.; Boulton, K.A.; Sutherland, R.; Barnett, D.; Bennett, B.; Chan, E.; Cramsie, J.; Drevensek, S.; Eapen, V.; Ganesalingam, K.; et al. Predictors of adaptive functioning in preschool aged children with autism spectrum disorder. Autism Res. 2021, 14, 1444–1455. [Google Scholar] [CrossRef] [PubMed]
  84. World Health Organisation (WHO). ICD-11 International Classification of Diseases for Mortality and Morbidity Statistics (11th Revision). 2018. Available online: (accessed on 11 January 2023).
  85. Courchesne, V.; Meilleur, A.A.S.; Poulin-Lord, M.P.; Dawson, M.; Soulières, I. Autistic children at risk of being underestimated: School-based pilot study of a strength-informed assessment. Mol. Autism 2015, 6, 12. [Google Scholar] [CrossRef][Green Version]
  86. Plesa Skwerer, D.; Jordan, S.E.; Brukilacchio, B.H.; Tager-Flusberg, H. Comparing methods for assessing receptive language skills in minimally verbal children and adolescents with autism spectrum disorders. Autism 2016, 20, 591–604. [Google Scholar] [CrossRef]
  87. Tager-Flusberg, H.; Kasari, C. Minimally verbal school-aged children with autism spectrum disorder: The neglected end of the spectrum. Autism Res. 2013, 6, 468–478. [Google Scholar] [CrossRef][Green Version]
  88. Elias, R.; Lord, C. Diagnostic stability in individuals with autism spectrum disorder: Insights from a longitudinal follow-up study. J. Child Psychol. Psychiatry 2022, 63, 973–983. [Google Scholar] [CrossRef]
  89. Le Couteur, A.; Lord, C.; Rutter, M. The Autism Diagnostic Interview-Revised (ADI-R); Western Psychological Services: Los Angeles, CA, USA, 2003. [Google Scholar]
  90. Lord, C.; Rutter, M.; DiLavore, P.; Risi, S.; Gotham, K.; Bishop, S. Autism Diagnostic Observation Schedule, 2nd ed.; Western Psychological Services: Los Angeles, CA, USA, 2012. [Google Scholar]
  91. Dawson, M.; Soulières, I.; Ann Gernsbacher, M.; Mottron, L. The level and nature of autistic intelligence. Psychol. Sci. 2007, 18, 657–662. [Google Scholar] [CrossRef] [PubMed][Green Version]
  92. Mottron, L.; Dawson, M.; Soulières, I.; Hubert, B.; Burack, J. Enhanced perceptual functioning in autism: An update, and eight principles of autistic perception. J. Autism Dev. Disord. 2006, 36, 27–43. [Google Scholar] [CrossRef] [PubMed]
  93. Barbeau, E.B.; Soulières, I.; Dawson, M.; Zeffiro, T.A.; Mottron, L. The level and nature of autistic intelligence III: Inspection time. J. Abnorm. Psychol. 2013, 122, 295. [Google Scholar] [CrossRef][Green Version]
  94. Bölte, S.; Dziobek, I.; Poustka, F. Brief report: The level and nature of autistic intelligence revisited. J. Autism Dev. Disord. 2009, 39, 678–682. [Google Scholar] [CrossRef] [PubMed]
  95. Bucaille, A.; Grandgeorge, M.; Degrez, C.; Mallégol, C.; Cam, P.; Botbol, M.; Planche, P. Cognitive profile in adults with Asperger syndrome using WAIS-IV: Comparison to typical adults. Res. Autism Spectr. Disord. 2016, 21, 1–9. [Google Scholar] [CrossRef]
  96. Nader, A.M.; Jelenic, P.; Soulières, I. Discrepancy between WISC-III and WISC-IV cognitive profile in autism spectrum: What does it reveal about autistic cognition? PLoS ONE 2015, 10, e0144645. [Google Scholar] [CrossRef][Green Version]
  97. Sahyoun, C.P.; Soulieres, I.; Belliveau, J.W.; Mottron, L.; Mody, M. Cognitive differences in pictorial reasoning between high-functioning autism and Asperger’s syndrome. J. Autism Dev. Disord. 2009, 39, 1014–1023. [Google Scholar] [CrossRef][Green Version]
  98. Soulières, I.; Dawson, M.; Gernsbacher, M.A.; Mottron, L. The level and nature of autistic intelligence II: What about Asperger syndrome? PLoS ONE 2011, 6, e25372. [Google Scholar] [CrossRef][Green Version]
  99. Gliga, T.; Bedford, R.; Charman, T.; Johnson, M.H.; Baron-Cohen, S.; Bolton, P.; Cheung, C.; Davies, K.; Liew, M.; Fernandes, J.; et al. Enhanced visual search in infancy predicts emerging autism symptoms. Curr. Biol. 2015, 25, 1727–1730. [Google Scholar] [CrossRef][Green Version]
  100. Joseph, R.M.; Keehn, B.; Connolly, C.; Wolfe, J.M.; Horowitz, T.S. Why is visual search superior in autism spectrum disorder? Dev. Sci. 2009, 12, 1083–1096. [Google Scholar] [CrossRef]
  101. Keehn, B.; Joseph, R.M. Exploring what’s missing: What do target absent trials reveal about autism search superiority? J. Autism Dev. Disord. 2016, 46, 1686–1698. [Google Scholar] [CrossRef] [PubMed][Green Version]
  102. Remington, A.M.; Swettenham, J.G.; Lavie, N. Lightening the load: Perceptual load impairs visual detection in typical adults but not in autism. J. Abnorm. Psychol. 2012, 121, 544. [Google Scholar] [CrossRef] [PubMed][Green Version]
  103. Remington, A.; Swettenham, J.; Campbell, R.; Coleman, M. Selective attention and perceptual load in autism spectrum disorder. Psychol. Sci. 2009, 20, 1388–1393. [Google Scholar] [CrossRef] [PubMed][Green Version]
  104. Ludlow, A.K.; Wilkins, A.J.; Heaton, P. Colored overlays enhance visual perceptual performance in children with autism spectrum disorders. Res. Autism Spectr. Disord. 2008, 2, 498–515. [Google Scholar] [CrossRef]
  105. Ludlow, A.K.; Taylor-Whiffen, E.; Wilkins, A.J. Coloured filters enhance the visual perception of social cues in children with autism spectrum disorders. Int. Sch. Res. Not. 2012, 2012, 298098. [Google Scholar] [CrossRef][Green Version]
  106. Whitaker, L.; Jones, C.R.; Wilkins, A.J.; Roberson, D. Judging the intensity of emotional expression in faces: The effects of colored tints on individuals with autism spectrum disorder. Autism Res. 2016, 9, 450–459. [Google Scholar] [CrossRef][Green Version]
  107. Dziuk, M.A.; Larson, J.G.; Apostu, A.; Mahone, E.M.; Denckla, M.B.; Mostofsky, S.H. Dyspraxia in autism: Association with motor, social, and communicative deficits. Dev. Med. Child Neurol. 2007, 49, 734–739. [Google Scholar] [CrossRef]
  108. Leary, M.R.; Hill, D.A. Moving on: Autism and movement disturbance. Ment. Retard. 1996, 34, 39–53. [Google Scholar]
  109. Shoener, R.F.; Kinnealey, M.; Koenig, K.P. You can know me now if you listen: Sensory, motor, and communication issues in a nonverbal person with autism. Am. J. Occup. Ther. 2008, 62, 547–553. [Google Scholar] [CrossRef][Green Version]
  110. Koegel, L.K.; Bryan, K.M.; Su, P.L.; Vaidya, M.; Camarata, S. Definitions of nonverbal and minimally verbal in research for autism: A systematic review of the literature. J. Autism Dev. Disord. 2020, 50, 2957–2972. [Google Scholar] [CrossRef]
  111. La Valle, C.; Plesa-Skwerer, D.; Tager-Flusberg, H. Comparing the pragmatic speech profiles of minimally verbal and verbally fluent individuals with autism spectrum disorder. J. Autism Dev. Disord. 2020, 50, 3699–3713. [Google Scholar] [CrossRef] [PubMed]
  112. Nadel, J. Perception–action coupling and imitation in autism spectrum disorder. Dev. Med. Child Neurol. 2015, 57, 55–58. [Google Scholar] [CrossRef] [PubMed]
  113. Stiegler, L.N. Discovering communicative competencies in a nonspeaking child with autism. Lang. Speech Hear. Serv. Sch. 2007, 38, 400–413. [Google Scholar] [CrossRef] [PubMed]
  114. Valle, C.L.; Chenausky, K.; Tager-Flusberg, H. How do minimally verbal children and adolescents with autism spectrum disorder use communicative gestures to complement their spoken language abilities? Autism Dev. Lang. Impair. 2021, 6, 23969415211035065. [Google Scholar] [CrossRef]
  115. Nadel, J.; Aouka, N.; Coulon, N.; Gras-Vincendon, A.; Canet, P.; Fagard, J.; Bursztejn, C. Yes they can! An approach to observational learning in low-functioning children with autism. Autism 2011, 15, 421–435. [Google Scholar] [CrossRef]
  116. Somogyi, E.; Király, I.; Gergely, G.; Nadel, J. Understanding goals and intentions in low-functioning autism. Res. Dev. Disabil. 2013, 34, 3822–3832. [Google Scholar] [CrossRef]
  117. McGonigle-Chalmers, M.; Alderson-Day, B.; Fleming, J.; Monsen, K. Profound expressive language impairment in low functioning children with autism: An investigation of syntactic awareness using a computerised learning task. J. Autism Dev. Disord. 2013, 43, 2062–2081. [Google Scholar] [CrossRef]
  118. Mucchetti, C.A. Adapted shared reading at school for minimally verbal students with autism. Autism 2013, 17, 358–372. [Google Scholar] [CrossRef]
  119. Heimann, M.; Laberg, K.E.; Nordøen, B. Imitative interaction increases social interest and elicited imitation in non-verbal children with autism. Infant Child Dev. 2006, 15, 297–309. [Google Scholar] [CrossRef]
  120. Gernsbacher, M.A. Toward a behavior of reciprocity. J. Dev. Process. 2006, 1, 139–152. [Google Scholar]
  121. Gernsbacher, M.A.; Stevenson, J.L.; Khandakar, S.; Goldsmith, H.H. Why does joint attention look atypical in autism? Child Dev. Perspect. 2008, 2, 38–45. [Google Scholar] [CrossRef] [PubMed][Green Version]
  122. Lainé, F.; Rauzy, S.; Tardif, C.; Gepner, B. Slowing down the presentation of facial and body movements enhances imitation performance in children with severe autism. J. Autism Dev. Disord. 2011, 41, 983–996. [Google Scholar] [CrossRef] [PubMed][Green Version]
  123. Shire, S.Y.; Goods, K.; Shih, W.; Distefano, C.; Kaiser, A.; Wright, C.; Mathy, P.; Landa, R.; Kasari, C. Parents’ adoption of social communication intervention strategies: Families including children with autism spectrum disorder who are minimally verbal. J. Autism Dev. Disord. 2015, 45, 1712–1724. [Google Scholar] [CrossRef] [PubMed][Green Version]
  124. Kasari, C.; Kaiser, A.; Goods, K.; Nietfeld, J.; Mathy, P.; Landa, R.; Murphy, S.; Almirall, D. Communication interventions for minimally verbal children with autism: A sequential multiple assignment randomized trial. J. Am. Acad. Child Adolesc. Psychiatry 2014, 53, 635–646. [Google Scholar] [CrossRef] [PubMed][Green Version]
  125. DiStefano, C.; Shih, W.; Kaiser, A.; Landa, R.; Kasari, C. Communication growth in minimally verbal children with ASD: The importance of interaction. Autism Res. 2016, 9, 1093–1102. [Google Scholar] [CrossRef]
  126. Gulsrud, A.C.; Hellemann, G.; Shire, S.; Kasari, C. Isolating active ingredients in a parent-mediated social communication intervention for toddlers with autism spectrum disorder. J. Child Psychol. Psychiatry 2016, 57, 606–613. [Google Scholar] [CrossRef] [PubMed]
  127. Haebig, E.; McDuffie, A.; Ellis Weismer, S. Brief report: Parent verbal responsiveness and language development in toddlers on the autism spectrum. J. Autism Dev. Disord. 2013, 43, 2218–2227. [Google Scholar] [CrossRef]
  128. Haebig, E.; McDuffie, A.; Weismer, S.E. The contribution of two categories of parent verbal responsiveness to later language for toddlers and preschoolers on the autism spectrum. Am. J. Speech Lang. Pathol. 2013, 22, 57–70. [Google Scholar] [CrossRef][Green Version]
  129. Kasari, C.; Paparella, T.; Freeman, S.; Jahromi, L.B. Language outcome in autism: Randomized comparison of joint attention and play interventions. J. Consult. Clin. Psychol. 2008, 76, 125. [Google Scholar] [CrossRef]
  130. Siller, M.; Hutman, T.; Sigman, M. A parent-mediated intervention to increase responsive parental behaviors and child communication in children with ASD: A randomized clinical trial. J. Autism Dev. Disord. 2013, 43, 540–555. [Google Scholar] [CrossRef][Green Version]
  131. Crompton, C.J.; DeBrabander, K.; Heasman, B.; Milton, D.; Sasson, N.J. Double empathy: Why autistic people are often misunderstood. Front. Young Minds 2021, 9, 554875. [Google Scholar] [CrossRef]
  132. Milton, D.E. On the ontological status of autism: The ‘double empathy problem’. Disabil. Soc. 2012, 27, 883–887. [Google Scholar] [CrossRef]
  133. Milton, D.; Gurbuz, E.; Lopez, B. The ‘double empathy problem’: Ten years on. Autism 2022, 26, 1901–1903. [Google Scholar] [CrossRef] [PubMed]
  134. Kasari, C.; Freeman, S.F.; Bauminger, N.; Alkin, M.C. Parental perspectives on inclusion: Effects of autism and Down syndrome. J. Autism Dev. Disord. 1999, 29, 297–305. [Google Scholar] [CrossRef] [PubMed]
  135. Harris, S.L.; Handleman, J.S. Age and IQ at intake as predictors of placement for young children with autism: A four-to six-year follow-up. J. Autism Dev. Disord. 2000, 30, 137–142. [Google Scholar] [CrossRef]
  136. Segall, M.J.; Campbell, J.M. Factors influencing the educational placement of students with autism spectrum disorders. Res. Autism Spectr. Disord. 2014, 8, 31–43. [Google Scholar] [CrossRef]
  137. Doll, E.A. The nature of mental deficiency. Psychol. Rev. 1940, 47, 395–415. [Google Scholar] [CrossRef]
  138. Goldsmith, D.M. Grading People. Vimeo. 2010. Available online: (accessed on 11 January 2023).
  139. Krueger, K.K. Minimally Verbal School-Aged Children with Autism: Communication, Academic Engagement and Classroom Quality; Unpublished Doctoral Dissertation; University of California: Los Angeles, CA, USA, 2013. [Google Scholar]
  140. Ravet, J. Inclusive/exclusive? Contradictory perspectives on autism and inclusion: The case for an integrative position. Int. J. Incl. Educ. 2011, 15, 667–682. [Google Scholar] [CrossRef]
  141. Andzik, N.R.; Chung, Y.C.; Doneski-Nicol, J.; Dollarhide, C.T. AAC services in schools: A special educator’s perspective. Int. J. Dev. Disabil. 2019, 65, 89–97. [Google Scholar] [CrossRef]
  142. Aldabas, R. Barriers and facilitators of using augmentative and alternative communication with students with multiple disabilities in inclusive education: Special education teachers’ perspectives. Int. J. Incl. Educ. 2021, 25, 1010–1026. [Google Scholar] [CrossRef]
  143. Biggs, E.E.; Hacker, R. Engaging stakeholders to improve social validity: Intervention priorities for students with complex communication needs. Augment. Altern. Commun. 2021, 37, 25–38. [Google Scholar] [CrossRef] [PubMed]
  144. DiStefano, C.; Kasari, C. The window to language is still open: Distinguishing between preverbal and minimally verbal children with ASD. Perspect. ASHA Spec. Interest Groups 2016, 1, 4–11. [Google Scholar] [CrossRef][Green Version]
  145. Logan, K.; Iacono, T.; Trembath, D. A systematic review of research into aided AAC to increase social-communication functions in children with autism spectrum disorder. Augment. Altern. Commun. 2017, 33, 51–64. [Google Scholar] [CrossRef] [PubMed]
  146. Aydin, O.; Diken, I.H. Studies comparing augmentative and alternative communication systems (AAC) applications for individuals with autism spectrum disorder: A systematic review and meta-analysis. Educ. Train. Autism Dev. Disabil. 2020, 55, 119–141. [Google Scholar]
  147. Hong, E.R.; Gong, L.Y.; Ninci, J.; Morin, K.; Davis, J.L.; Kawaminami, S.; Shi, Y.; Noro, F. A meta-analysis of single-case research on the use of tablet-mediated interventions for persons with ASD. Res. Dev. Disabil. 2017, 70, 198–214. [Google Scholar] [CrossRef]
  148. Syriopoulou-Delli, C.K.; Eleni, G. Effectiveness of different types of Augmentative and Alternative Communication (AAC) in improving communication skills and in enhancing the vocabulary of children with ASD: A review. Rev. J. Autism Dev. Disord. 2021, 9, 493–506. [Google Scholar] [CrossRef]
  149. Almirall, D.; DiStefano, C.; Chang, Y.C.; Shire, S.; Kaiser, A.; Lu, X.; Nahum-Shani, I.; Landa, R.; Mathy, P.; Kasari, C. Longitudinal effects of adaptive interventions with a speech-generating device in minimally verbal children with ASD. J. Clin. Child Adolesc. Psychol. 2016, 45, 442–456. [Google Scholar] [CrossRef]
  150. van der Meer, L.; Sutherland, D.; O’Reilly, M.F.; Lancioni, G.E.; Sigafoos, J. A further comparison of manual signing, picture exchange, and speech-generating devices as communication modes for children with autism spectrum disorders. Res. Autism Spectr. Disord. 2012, 6, 1247–1257. [Google Scholar] [CrossRef]
  151. Gillespie-Smith, K.; Fletcher-Watson, S. Designing AAC systems for children with autism: Evidence from eye tracking research. Augment. Altern. Commun. 2014, 30, 160–171. [Google Scholar] [CrossRef]
  152. Light, J.; McNaughton, D. From basic to applied research to improve outcomes for individuals who require augmentative and alternative communication: Potential contributions of eye tracking research methods. Augment. Altern. Commun. 2014, 30, 99–105. [Google Scholar] [CrossRef][Green Version]
  153. Kelly, D.J.; Walker, R.; Norbury, C.F. Deficits in volitional oculomotor control align with language status in autism spectrum disorders. Dev. Sci. 2013, 16, 56–66. [Google Scholar] [CrossRef] [PubMed]
  154. Tsatsanis, K.D.; Dartnall, N.; Cicchetti, D.; Sparrow, S.S.; Klin, A.; Volkmar, F.R. Concurrent validity and classification accuracy of the Leiter and Leiter-R in low-functioning children with autism. J. Autism Dev. Disord. 2003, 33, 23–30. [Google Scholar] [CrossRef]
  155. Shah, A.; Holmes, N. Brief report: The use of the Leiter International Performance Scale with autistic children. J. Autism Dev. Disord. 1985, 15, 195–203. [Google Scholar] [CrossRef] [PubMed]
  156. Chenausky, K.V.; Norton, A.C.; Tager-Flusberg, H.; Schlaug, G. Auditory-motor mapping training: Testing an intonation-based spoken language treatment for minimally verbal children with autism spectrum disorder. Ann. N. Y. Acad. Sci. 2022, 1515, 266–275. [Google Scholar] [CrossRef] [PubMed]
  157. Grondhuis, S.N.; Mulick, J.A. Comparison of the Leiter International Performance Scale-Revised and the Stanford-Binet Intelligence Scales, in children with autism spectrum disorders. Am. J. Intellect. Dev. Disabil. 2013, 118, 44–54. [Google Scholar] [CrossRef] [PubMed][Green Version]
  158. Scattone, D.; Raggio, D.J.; May, W. Brief report: Concurrent validity of the Leiter-R and KBIT-2 scales of nonverbal intelligence for children with autism and language impairments. J. Autism Dev. Disord. 2012, 42, 2486–2490. [Google Scholar] [CrossRef] [PubMed]
  159. McGonigle-Chalmers, M.; McSweeney, M. The role of timing in testing nonverbal IQ in children with ASD. J. Autism Dev. Disord. 2013, 43, 80–90. [Google Scholar] [CrossRef]
  160. Charman, T.; Jones, C.R.; Pickles, A.; Simonoff, E.; Baird, G.; Happé, F. Defining the cognitive phenotype of autism. Brain Res. 2011, 1380, 10–21. [Google Scholar] [CrossRef]
  161. Carothers, D.E.; Taylor, R.L. Differential effect of features of autism on IQs reported using Wechsler scales. Focus Autism Other Dev. Disabil. 2013, 28, 54–59. [Google Scholar] [CrossRef]
  162. Stone, W.L. Cross-disciplinary perspectives on autism. J. Pediatr. Psychol. 1987, 12, 615–630. [Google Scholar] [CrossRef]
  163. Stone, W.L.; Rosenbaum, J.L. A comparison of teacher and parent views of autism. J. Autism Dev. Disord. 1988, 18, 403–414. [Google Scholar] [CrossRef] [PubMed]
  164. Gillespie-Lynch, K.; Brooks, P.J.; Someki, F.; Obeid, R.; Shane-Simpson, C.; Kapp, S.K.; Daou, N.; Smith, D.S. Changing college students’ conceptions of autism: An online training to increase knowledge and decrease stigma. J. Autism Dev. Disord. 2015, 45, 2553–2566. [Google Scholar] [CrossRef] [PubMed][Green Version]
  165. Tipton, L.A.; Blacher, J. Brief report: Autism awareness: Views from a campus community. J. Autism Dev. Disord. 2014, 44, 477–483. [Google Scholar] [CrossRef] [PubMed]
  166. Asperger, H. ‘Autistic psychopathy’ in childhood. In Autism and Asperger Syndrome; Frith, U., Ed.; Cambridge University Press: Cambridge, UK, 1991; pp. 37–92. [Google Scholar]
  167. Asperger, H. Die autistischen Psychopathen im Kindesalter. Arch. Psychiatre Nervenkrankh. 1944, 117, 76–136. [Google Scholar] [CrossRef]
  168. Edelson, M.G. Are the majority of children with autism mentally retarded? A systematic evaluation of the data. Focus Autism Other Dev. Disabil. 2006, 21, 66–83. [Google Scholar] [CrossRef]
  169. Freeman, B.J.; Van Dyke, M. Are the majority of children with autism mentally retarded? Focus Autism Other Dev. Disabil. 2006, 21, 86–88. [Google Scholar] [CrossRef]
  170. Slušná, D.; Rodríguez, A.; Salvadó, B.; Vicente, A.; Hinzen, W. Relations between language, nonverbal cognition, and conceptualization in non-or minimally verbal individuals with ASD across the lifespan. Autism Dev. Lang. Impair. 2021, 6, 23969415211053264. [Google Scholar] [CrossRef]
  171. Akshoomoff, N. Use of the Mullen Scales of Early Learning for the assessment of young children with autism spectrum disorders. Child Neuropsychol. 2006, 12, 269–277. [Google Scholar] [CrossRef][Green Version]
  172. Courchesne, V.; Girard, D.; Jacques, C.; Soulières, I. Assessing intelligence at autism diagnosis: Mission impossible? Testability and cognitive profile of autistic preschoolers. J. Autism Dev. Disord. 2019, 49, 845–856. [Google Scholar] [CrossRef]
  173. Chevallier, C.; Parish-Morris, J.; Tonge, N.; Le, L.; Miller, J.; Schultz, R.T. Susceptibility to the audience effect explains performance gap between children with and without autism in a theory of mind task. J. Exp. Psychol. Gen. 2014, 143, 972. [Google Scholar] [CrossRef][Green Version]
  174. Autistic Self Advocacy Network. Functioning Labels Harm Autistic People. 9 December 2021. Available online: (accessed on 11 January 2023).
  175. Keating, C.T.; Hickman, L.; Leung, J.; Monk, R.; Montgomery, A.; Heath, H.; Sowden, S. Autismrelated language preferences of English-speaking individuals across the globe: A mixed methods investigation. Autism Res. 2022. [Google Scholar] [CrossRef] [PubMed]
  176. Baggs, A. The meaning of self-advocacy. In Loud Hands: Autistic People, Speaking; Bascom, J., Ed.; The Autistic Press: Washington, DC, USA, 2012; pp. 223–225. [Google Scholar]
  177. Baker, J.K.; Smith, L.E.; Greenberg, J.S.; Seltzer, M.M.; Taylor, J.L. Change in maternal criticism and behavior problems in adolescents and adults with autism across a 7-year period. J. Abnorm. Psychol. 2011, 120, 465–475. [Google Scholar] [CrossRef] [PubMed][Green Version]
  178. Zaidman-Zait, A.; Mirenda, P.; Duku, E.; Szatmari, P.; Georgiades, S.; Volden, J.; Zwaigenbaum, L.; Vaillancourt, T.; Bryson, S.; Smith, I.; et al. Examination of bidirectional relationships between parent stress and two types of problem behavior in children with autism spectrum disorder. J. Autism Dev. Disord. 2014, 44, 1908–1917. [Google Scholar] [CrossRef] [PubMed]
  179. Park, S.; Park, M.H.; Kim, H.J.; Yoo, H.J. Anxiety and depression symptoms in children with Asperger syndrome compared with attention-deficit/hyperactivity disorder and depressive disorder. J. Child Fam. Stud. 2013, 22, 559–568. [Google Scholar] [CrossRef]
  180. Totsika, V.; Hastings, R.P.; Emerson, E.; Lancaster, G.A.; Berridge, D.M.; Vagenas, D. Is there a bidirectional relationship between maternal well-being and child behavior problems in autism spectrum disorders? Longitudinal analysis of a population defined sample of young children. Autism Res. 2013, 6, 201–211. [Google Scholar] [CrossRef] [PubMed]
  181. Adler, N.; Dvash, J.; Shamay-Tsoory, S.G. Empathic embarrassment accuracy in autism spectrum disorder. Autism Res. 2015, 8, 241–249. [Google Scholar] [CrossRef]
  182. Pouw, L.B.; Rieffe, C.; Oosterveld, P.; Huskens, B.; Stockmann, L. Reactive/proactive aggression and affective/cognitive empathy in children with ASD. Res. Dev. Disabil. 2013, 34, 1256–1266. [Google Scholar] [CrossRef]
  183. Samson, A.C.; Phillips, J.M.; Parker, K.J.; Shah, S.; Gross, J.J.; Hardan, A.Y. Emotion dysregulation and the core features of autism spectrum disorder. J. Autism Dev. Disord. 2014, 44, 1766–1772. [Google Scholar] [CrossRef][Green Version]
  184. Wood, J.J.; Gadow, K.D. Exploring the nature and function of anxiety in youth with autism spectrum disorders. Clin. Psychol. Sci. Pract. 2010, 17, 281–292. [Google Scholar] [CrossRef]
  185. Jahromi, L.B.; Meek, S.E.; Ober-Reynolds, S. Emotion regulation in the context of frustration in children with high functioning autism and their typical peers. J. Child Psychol. Psychiatry 2012, 53, 1250–1258. [Google Scholar] [CrossRef]
  186. Mazefsky, C.A.; Borue, X.; Day, T.N.; Minshew, N.J. Emotion regulation patterns in adolescents with high-functioning autism spectrum disorder: Comparison to typically developing adolescents and association with psychiatric symptoms. Autism Res. 2014, 7, 344–354. [Google Scholar] [CrossRef] [PubMed][Green Version]
  187. Evans, D.W.; Canavera, K.; Kleinpeter, F.L.; Maccubbin, E.; Taga, K. The fears, phobias and anxieties of children with autism spectrum disorders and Down syndrome: Comparisons with developmentally and chronologically age matched children. Child Psychiatry Hum. Dev. 2005, 36, 3–26. [Google Scholar] [CrossRef]
  188. Gotham, K.; Bishop, S.L.; Hus, V.; Huerta, M.; Lund, S.; Buja, A.; Krieger, A.; Lord, C. Exploring the relationship between anxiety and insistence on sameness in autism spectrum disorders. Autism Res. 2013, 6, 33–41. [Google Scholar] [CrossRef] [PubMed][Green Version]
  189. Brewer, R.; Biotti, F.; Catmur, C.; Press, C.; Happé, F.; Cook, R.; Bird, G. Can neurotypical individuals read autistic facial expressions? Atypical production of emotional facial expressions in autism spectrum disorders. Autism Res. 2016, 9, 262–271. [Google Scholar] [CrossRef] [PubMed][Green Version]
  190. Sheppard, E.; Pillai, D.; Wong, G.T.L.; Ropar, D.; Mitchell, P. How easy is it to read the minds of people with autism spectrum disorder? J. Autism Dev. Disord. 2016, 46, 1247–1254. [Google Scholar] [CrossRef]
  191. Humphrey, N.; Symes, W. Perceptions of social support and experience of bullying among pupils with autistic spectrum disorders in mainstream secondary schools. Eur. J. Spec. Needs Educ. 2010, 25, 77–91. [Google Scholar] [CrossRef]
  192. Lasgaard, M.; Nielsen, A.; Eriksen, M.E.; Goossens, L. Loneliness and social support in adolescent boys with autism spectrum disorders. J. Autism Dev. Disord. 2010, 40, 218–226. [Google Scholar] [CrossRef]
  193. Cottenceau, H.; Roux, S.; Blanc, R.; Lenoir, P.; Bonnet-Brilhault, F.; Barthélémy, C. Quality of life of adolescents with autism spectrum disorders: Comparison to adolescents with diabetes. Eur. Child Adolesc. Psychiatry 2012, 21, 289–296. [Google Scholar] [CrossRef]
  194. Barnhill, G.P.; Hagiwara, T.; Myles, B.S.; Simpson, R.L.; Brick, M.L.; Griswold, D.E. Parent, teacher, and self-report of problem and adaptive behaviors in children and adolescents with Asperger syndrome. Assess. Eff. Interv. 2000, 25, 147–167. [Google Scholar] [CrossRef]
  195. Kanne, S.M.; Mazurek, M.O. Aggression in children and adolescents with ASD: Prevalence and risk factors. J. Autism Dev. Disord. 2011, 41, 926–937. [Google Scholar] [CrossRef]
  196. Kanne, S.M.; Abbacchi, A.M.; Constantino, J.N. Multi-informant ratings of psychiatric symptom severity in children with autism spectrum disorders: The importance of environmental context. J. Autism Dev. Disord. 2009, 39, 856–864. [Google Scholar] [CrossRef] [PubMed][Green Version]
  197. Losh, A.; Eisenhower, A.; Blacher, J. Impact of student-teacher relationship quality on classroom behavioral engagement for young students on the autism spectrum. Res. Autism Spectr. Disord. 2022, 98, 102027. [Google Scholar] [CrossRef]
  198. Milton, D.E.M. Autistic expertise: A critical reflection on the production of knowledge in autism studies. Autism 2014, 18, 794–802. [Google Scholar] [CrossRef] [PubMed][Green Version]
  199. Silverman, C. Understanding Autism: Parents, Doctors, and the History of a Disorder; Princeton University Press: Princeton, NJ, USA, 2012. [Google Scholar]
  200. Smukler, D. Unauthorized minds: How “theory of mind” theory misrepresents autism. Ment. Retard. 2005, 42, 11–24. [Google Scholar] [CrossRef]
  201. Yergeau, M. Circle wars: Reshaping the typical autism essay. Disabil. Stud. Q. 2010, 30. [Google Scholar] [CrossRef]
  202. Kapp, S.K.; Gillespie-Lynch, K.; Sherman, L.E.; Hutman, T. Deficit, difference, or both? Autism and neurodiversity. Dev. Psychol. 2013, 49, 59–71. [Google Scholar] [CrossRef][Green Version]
  203. Nicolaidis, C. What can physicians learn from the neurodiversity movement? Virtual Mentor 2012, 14, 503–510. [Google Scholar]
  204. Silberman, S. NeuroTribes: The Legacy of Autism and the Future of Neurodiversity; Avery: New York, NY, USA, 2015. [Google Scholar]
  205. Sinclair, J. Autism Network International: The development of a community and its culture. In Loud Hands: Autistic People, Speaking; Bascom, J., Ed.; The Autistic Press: Washington, DC, USA, 2012; pp. 17–48. Available online: (accessed on 17 January 2023).
  206. Sinclair, J. Don’t mourn for us. In Loud Hands: Autistic People, Speaking. Bascom, J., Ed.; The Autistic Press: Washington, DC, USA, 2012; pp. 13–16. [Google Scholar]
  207. Singer, J. Neurodiversity: The Birth of an Idea; The University of Edinburgh: Edinburgh, UK, 2017. [Google Scholar]
  208. Botha, M.; Cage, E. “Autism Research is in Crisis”: A mixed method study of researcher’s constructions of autistic people and autism research. Front. Psychol. 2022, 13, 1050897. [Google Scholar] [CrossRef]
  209. Hillary, A. Neurodiversity and cross-cultural communication. In Neurodiversity Studies; Routledge: New York, NY, USA, 2020; pp. 91–107. [Google Scholar]
  210. Den Houting, J. Neurodiversity: An insider’s perspective. Autism 2019, 23, 271–273. [Google Scholar] [CrossRef]
  211. Gillespie-Lynch, K.; Kapp, S.K.; Brooks, P.J.; Pickens, J.; Schwartzman, B. Whose expertise is it? Evidence for autistic adults as critical autism experts. Front. Psychol. 2017, 8, 438. [Google Scholar] [CrossRef][Green Version]
  212. Ne’eman, A. The future (and the past) of Autism advocacy, or why the ASA’s magazine, The Advocate, wouldn’t publish this piece. Disabil. Stud. Q. 2010, 30. [Google Scholar] [CrossRef]
  213. Ne’eman, A.; Bascom, J. Autistic self advocacy in the developmental disability movement. Am. J. Bioeth. 2020, 20, 25–27. [Google Scholar] [CrossRef]
  214. Hersh, L.H. Autism Stakeholder Views on Autism Intervention: Effects of Closeness to Autistic People with High Support Needs. Bachelor’s Thesis, University of California, Davis, CA, USA. Unpublished.
  215. Milshtein, S.; Yirmiya, N.; Oppenheim, D.; Koren-Karie, N.; Levi, S. Resolution of the diagnosis among parents of children with autism spectrum disorder: Associations with child and parent characteristics. J. Autism Dev. Disord. 2010, 40, 89–99. [Google Scholar] [CrossRef] [PubMed]
  216. Totsika, V.; Hastings, R.P.; Emerson, E.; Lancaster, G.A.; Berridge, D.M. A population-based investigation of behavioural and emotional problems and maternal mental health: Associations with autism spectrum disorder and intellectual disability. J. Child Psychol. Psychiatry 2011, 52, 91–99. [Google Scholar] [CrossRef] [PubMed]
  217. Yirmiya, N.; Seidman, I.; Koren-Karie, N.; Oppenheim, D.; Dolev, S. Stability and change in resolution of diagnosis among parents of children with autism spectrum disorder: Child and parental contributions. Dev. Psychopathol. 2015, 27 Pt 1, 1045–1057. [Google Scholar] [CrossRef] [PubMed]
  218. Shogren, K.A.; Burke, K.M.; Anderson, M.H.; Antosh, A.A.; Wehmeyer, M.L.; LaPlante, T.; Shaw, L.A. Evaluating the differential impact of interventions to promote self-determination and goal attainment for transition-age youth with intellectual disability. Res. Pract. Pers. Sev. Disabil. 2018, 43, 165–180. [Google Scholar] [CrossRef]
  219. Shogren, K.A.; Hicks, T.A.; Burke, K.M.; Antosh, A.; LaPlante, T.; Anderson, M.H. Examining the impact of the SDLMI and whose future is it? Over a two-year period with students with intellectual disability. Am. J. Intellect. Dev. Disabil. 2020, 125, 217–229. [Google Scholar] [CrossRef]
  220. Tesfaye, R.; Courchesne, V.; Mirenda, P.; Mitchell, W.; Nicholas, D.; Singh, I.; Zwaigenbaum, L.; Elsabbagh, M. Autism voices: Perspectives of the needs, challenges, and hopes for the future of autistic youth. Autism 2022, 13623613221132108. [Google Scholar] [CrossRef]
  221. Carson, D. Walking with Joaquin. YouTube. 13 December 2017. Available online: (accessed on 11 January 2023).
Disclaimer/Publisher’s Note: The statements, opinions and data contained in all publications are solely those of the individual author(s) and contributor(s) and not of MDPI and/or the editor(s). MDPI and/or the editor(s) disclaim responsibility for any injury to people or property resulting from any ideas, methods, instructions or products referred to in the content.

Share and Cite

MDPI and ACS Style

Kapp, S.K. Profound Concerns about “Profound Autism”: Dangers of Severity Scales and Functioning Labels for Support Needs. Educ. Sci. 2023, 13, 106.

AMA Style

Kapp SK. Profound Concerns about “Profound Autism”: Dangers of Severity Scales and Functioning Labels for Support Needs. Education Sciences. 2023; 13(2):106.

Chicago/Turabian Style

Kapp, Steven K. 2023. "Profound Concerns about “Profound Autism”: Dangers of Severity Scales and Functioning Labels for Support Needs" Education Sciences 13, no. 2: 106.

Note that from the first issue of 2016, this journal uses article numbers instead of page numbers. See further details here.

Article Metrics

Back to TopTop