The Severe End of the Spectrum: Insights and Opportunities from the Autism Inpatient Collection (AIC)

Siegel, Matthew

doi:10.1007/s10803-018-3731-6

Cited by 20 publications

(14 citation statements)

References 23 publications

(23 reference statements)

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“…Thus, despite interest in the comorbid psychiatric conditions in people with ASD, there is a paucity of studies that focus on the segment of the population most severely affected, the ~30% of individuals with ASD who remain non- or minimally verbal beyond school-age (26, 27). In an effort to fill this gap, a research collaborative between several academic and medical institutions was established in 2014, with the goal of conducting common comprehensive assessments on children and adolescents with ASD admitted to inpatient psychiatry care units [the Autism Inpatient Collection; AIC; (28)]. A preliminary paper reporting on 147 participants showed that expressive language impairment (being non-, or minimally verbal) affected 52% of the sample, 43% had intellectual disability, and 27% engaged in self-injurious behavior.…”

Section: Introductionmentioning

confidence: 99%

“…In sum, the majority of previous studies did not enroll non- or minimally verbal youths with ASD and only more recent studies have focused specifically on this neglected “severe end of the spectrum” (26, 28). Expanding on this research, here we examined the type, frequency, and severity of psychiatric symptoms using the CASI-5 as our primary outcome measure, and the Emotion Dysregulation Inventory [ EDI ; (35)], a new measure designed to assess emotion control difficulties independently of IQ and verbal ability in individuals with ASD, in a group of MV children and adolescents with ASD who have never received inpatient psychiatric care.…”

Section: Introductionmentioning

confidence: 99%

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Prevalence and Correlates of Psychiatric Symptoms in Minimally Verbal Children and Adolescents With ASD

et al. 2019

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Despite many studies documenting the prevalence of various co-occurring psychiatric symptoms in children and adults with ASD, less is known about how these symptoms relate to subtypes defined by particular phenotypic features within the ASD population. We examined the severity and prevalence of comorbid symptoms of psychopathology, emotion dysregulation, and maladaptive behaviors, as well as adaptive functioning, in a group of 65 minimally verbal children ( n = 33) and adolescents ( n = 32) with ASD. On the Child and Adolescent Symptom Inventory (CASI-5), for all the symptom classifications except oppositional defiant disorder and conduct disorder, more participants in our sample showed elevated or clinically concerning severity scores relative to the general population. On the Emotion Dysregulation Inventory (EDI) , the mean scores for Reactivity and Dysphoria factors in our sample were lower than in the autism calibration sample, which included a large number of inpatient youth with ASD. Overall, few differences were found between the children and adolescents within this severely impaired group of ASD individuals based on clinical cutoff scores on the CASI-5 and EDI factor scores. Psychiatric comorbidities and emotion dysregulation measures were not correlated with autism symptom severity or with measures of adaptive functioning, and were largely unrelated to IQ in our sample. The number of clinically significant psychiatric symptoms on the CASI-5 emerged as the main predictor of maladaptive behaviors. Findings suggest a wide range of co-occurring psychopathology and high degree of maladaptive behavior among minimally verbal children and adolescents with ASD, which are not directly attributable to autism symptom severity, intellectual disability or limitations in adaptive functioning.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Prevalence and Correlates of Psychiatric Symptoms in Minimally Verbal Children and Adolescents With ASD

et al. 2019

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“…Interviewing people with communication impairments is a relatively recent innovation, with scope for refinement (Siegel, 2018). The few researchers who have interviewed people with autism, have mainly focused on individuals who have expressive language and the ability to communicate independently (Kirby et al, 2015;Vine Foggo & Webster, 2017).…”

Section: Interview As a Data Collection Methods With People With Nonvementioning

confidence: 99%

“…Whilst there is a growing body of research pertaining to people with autism, a paucity of research concerning those with Level 3 (severe -nonverbal)(American Psychiatric Association [APA], 2013) autism is evident (Hills, Clapton, & Dorset, 2016). Communication and social barriers have prevented the inclusion of people with nonverbal autism as direct respondents in research opportunities to date (Siegel, 2018). This paper describes the methodological approach of a research study, Spirituality in the context of people with nonverbal autism.…”

Section: Introductionmentioning

confidence: 99%

Conducting Research with People with Nonverbal Autism: An Inclusive Methodological Approach

Hills

Clapton

Dorsett

et al. 2020

Journal of Social Inclusion

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Current academic literature exposes a paucity of information about people diagnosed with Level 3 (severe social and communication deficits requiring substantial support) autism from their own perspective. Most research pertaining to this population has obtained data from secondary sources such as a parent or caregiver. This paper describes the methodological approach to a study exploring the spirituality of people with Level 3 autism, using interview as a strategy for sourcing data. The study was intentionally designed to work inclusively with this population, rather than conducting research on or about them. As such, opportunity was provided for participants to be direct respondents in the research process. Participants were seven adults, aged between 23 and 53, who had been diagnosed with Level 3 autism. A bricolage approach incorporating participant's personal narratives provided an inclusive method for working with people who do not use spoken language to communicate. As communicating with this population necessitates the use of some type of augmentative device, certain strategies were adopted to address the particular practical, methodological and ethical challenges confronted during the research process. Interviews resulted in a rich source of data, providing unique insights into the lived experience of a severely under researched population. This study demonstrated that with researcher flexibility, a methodology that provides participants meaningful and inclusive involvement is not only possible, but beneficial in learning more about this marginalised group. Furthermore, this paper introduces a methodological approach that provides a platform for further research concerning people who do not communicate by speech.

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“…Adults on the autism spectrum with co-occurring intellectual disability (ID) are critically underrepresented in the autism intervention literature (Siegel 2018). Adults with ID have only been included in approximately 6% of published studies (Russell et al 2019) yet are estimated to represent 30-40% of all individuals on the autism spectrum (Maenner 2020).…”

mentioning

confidence: 99%

Social Interaction Skill Intervention for Autistic Adults with Intellectual Disability and Limited Language: A Pilot of the SKILL Program

Ferguson

Drapalik

Liang

et al. 2020

J Autism Dev Disord

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There is a dearth of research that focuses on social intervention efforts for adults on the autism spectrum with intellectual disability and limited conversational language. Using a multiple baseline experimental design, this pilot investigation of the Socialization Knowledge for Individuals with Limited Language (SKILL) program evaluated a novel peer-facilitated group program specifically designed to target social interaction skills for this population. Findings from five pilot participants yielded evidence of social improvements across specific verbal skills (on-topic conversational contributions and responses) and nonverbal behaviors (eye-contact, active listening), as evidenced by coded social conversation probes and parent-report measures. These findings demonstrate the promise of a socialization intervention for a population that has historically been neglected in the social intervention research literature.

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The Severe End of the Spectrum: Insights and Opportunities from the Autism Inpatient Collection (AIC)

Cited by 20 publications

References 23 publications

Prevalence and Correlates of Psychiatric Symptoms in Minimally Verbal Children and Adolescents With ASD

Prevalence and Correlates of Psychiatric Symptoms in Minimally Verbal Children and Adolescents With ASD

Conducting Research with People with Nonverbal Autism: An Inclusive Methodological Approach

Social Interaction Skill Intervention for Autistic Adults with Intellectual Disability and Limited Language: A Pilot of the SKILL Program

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