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Article
Publication date: 21 December 2023

Freya Rumball, Rachel Parker, Ailbhe Elizabeth Madigan, Francesca Happe and Debbie Spain

Autistic individuals are at increased risk of trauma exposure and post-traumatic stress disorder (PTSD). Diagnostic overshadowing, however, often results in PTSD symptoms being…

Abstract

Purpose

Autistic individuals are at increased risk of trauma exposure and post-traumatic stress disorder (PTSD). Diagnostic overshadowing, however, often results in PTSD symptoms being mislabelled as autistic traits. This study aims to develop professional consensus on the identification and assessment of co-occurring PTSD in autistic adults.

Design/methodology/approach

An online modified Delphi design was used to gather professionals’ perspectives on key aspects of the identification and assessment of PTSD in autistic adults. Data were gathered qualitatively in Round 1 and then synthesised using content analysis into a list of statements that were rated in Round 2. Statements reaching 60–79% consensus and additional suggestions were sent out for rating in Round 3. Consensus for the final statement list was set at 80% agreement.

Findings

Overall, 108 statements reached consensus. These form the basis of professional-informed recommendations to facilitate the identification and assessment of PTSD symptoms in autistic adults.

Practical implications

The final Delphi statements provide a framework to assist with the assessment and recognition of traumatic stress reactions in autistic adults presenting to mental health, diagnostic or social services.

Originality/value

To the best of the authors’ knowledge, this is the first study to explore the presentation and identification of PTSD in autistic adults (with and without intellectual disability), using a bottom-up approach informed by professional consensus.

Details

Advances in Autism, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 2056-3868

Keywords

Article
Publication date: 4 November 2020

Asmita Karmakar, Manisha Bhattacharya, Jayeeta Adhya, Susmita Chatterjee and Atanu Kumar Dogra

Autism spectrum disorders (ASD) are heterogeneous disorders, and heterogeneity lies both at genetic and phenotypic levels. To better understand the etiology and pathway that may…

Abstract

Purpose

Autism spectrum disorders (ASD) are heterogeneous disorders, and heterogeneity lies both at genetic and phenotypic levels. To better understand the etiology and pathway that may contribute to autism symptomatology, it is important to study milder expressions of autism characteristics – autistic traits or milder expressions of autism phenotype, especially in intergenerational context. This study aims to see the trend of association, if any, between child autism symptom and mothers’ autism phenotype as well as mothers’ theory of mind and to see if mothers’ theory of mind was associated with their own autistic traits.

Design/methodology/approach

Data were collected from 96 mothers of children with varying symptom severity of autism (mild, moderate and severe) using Autism Spectrum Quotient and faux pas recognition test. Analysis of variance, trend analysis and t-test were done.

Findings

Results showed a linear trend of relationship between mothers’ autism phenotype and child symptom severity. However, the groups did not have significant differences in theory of mind. Only a few components of theory of mind were found to be associated with autistic traits. These findings question the prevailing idea that theory of mind can be a reliable endophenotype of autism.

Research limitations/implications

There has been a lack of research assessing the possible link between parents’ autism phenotype and symptom severity of ASD children. This study is a preliminary step towards that direction. This study indicates a probability of shared genetic liability between mothers and offspring, which would have important consequences for understanding the mechanisms that lead to autism.

Practical implications

This study offers implications for treatment planning of those with clinical ASD. An awareness of parental factors is critical for any holistic intervention plan when a family seeks treatment for their child. This study suggests that while individualising interventions, clinicians may consider possible presence of high levels of autistic traits and related cognitive features present in the probands’ parents.

Originality/value

There has been lack of research assessing the possible link between parents’ autism phenotype and symptom severity of ASD children. This study, even though preliminary, is a step towards that direction. This study suggests that autism traits might be influenced by common genetic variation and indicates a probability of shared genetic liability between mothers and offspring, which would have important consequences for understanding the mechanisms that lead to autism.

Details

Advances in Autism, vol. 7 no. 2
Type: Research Article
ISSN: 2056-3868

Keywords

Article
Publication date: 4 January 2016

Marco O. Bertelli, Michele Rossi, Roberto Keller and Stefano Lassi

The management of individuals with autism spectrum disorders (ASDs) requires a multimodal approach of behavioural, educational and pharmacological treatments. At present, there…

Abstract

Purpose

The management of individuals with autism spectrum disorders (ASDs) requires a multimodal approach of behavioural, educational and pharmacological treatments. At present, there are no available drugs to treat the core symptoms of ASDs and therefore a wide range of psychotropic medications are used in the management of problems behaviours, co-occurring psychiatric disorders and other associated features. The purpose of this paper is to map the literature on pharmacological treatment in persons with ASD in order to identify those most commonly used, choice criteria, and safety.

Design/methodology/approach

A systematic mapping of the recent literature was undertaken on the basis of the following questions: What are the most frequently used psychoactive compounds in ASD? What are the criteria guiding the choice of a specific compound? How effective and safe is every psychoactive drug used in ASD? The literature search was conducted through search engines available on Medline, Medmatrix, NHS Evidence, Web of Science and the Cochrane Library.

Findings

Many psychotropic medications have been studied in ASDs, but few have strong evidence to support their use. Most commonly prescribed medications, in order of frequency, are antipsychotics, antidepressants, anticonvulsants and stimulants, many of them without definitive studies guiding their usage. Recent animal studies can be useful models for understanding the common pathogenic pathways leading to ASDs, and have the potential to offer new biologically focused treatment options.

Originality/value

This is a practice review paper applying recent evidence from the literature.

Details

Advances in Mental Health and Intellectual Disabilities, vol. 10 no. 1
Type: Research Article
ISSN: 2044-1282

Keywords

Open Access
Article
Publication date: 30 September 2015

Lucia Parisi, Teresa Di Filippo and Michele Roccella

Cornelia de Lange syndrome (CdLS) is a congenital disorder characterized by distinctive facial features, growth retardation, limb abnormalities, intellectual disability, and…

Abstract

Cornelia de Lange syndrome (CdLS) is a congenital disorder characterized by distinctive facial features, growth retardation, limb abnormalities, intellectual disability, and behavioral problems. Cornelia de Lange syndrome is associated with abnormalities on chromosomes 5, 10 and X. Heterozygous point mutations in three genes (NIPBL, SMC3 and SMC1A), are responsible for approximately 50-60% of CdLS cases. CdLS is characterized by autistic features, notably excessive repetitive behaviors and expressive language deficits. The prevalence of autism spectrum disorder (ASD) symptomatology is comparatively high in CdLS. However, the profile and developmental trajectories of these ASD characteristics are potentially different to those observed in individuals with idiopathic ASD. A significantly higher prevalence of self-injury are evident in CdLS. Self-injury was associated with repetitive and impulsive behavior. This study describes the behavioral phenotype of four children with Cornelia de Lange syndrome and ASDs and rehabilitative intervention that must be implemented.

Details

Mental Illness, vol. 7 no. 2
Type: Research Article
ISSN: 2036-7465

Keywords

Open Access
Article
Publication date: 2 December 2019

Magda Di Renzo, Viviana Guerriero, Massimiliano Petrillo, Lidia Racinaro, Elena Vanadia and Federico Bianchi di Castelbianco

The assessment of Autism Spectrum Disorders (ASD) in childhood has two essential aspects: the identification of the risk (under 30 months of age) and the definition of a diagnosis…

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Abstract

Purpose

The assessment of Autism Spectrum Disorders (ASD) in childhood has two essential aspects: the identification of the risk (under 30 months of age) and the definition of a diagnosis that takes into account its core areas as well as further non-specific aspects. The purpose of this paper is to present an approach that considers the combination of clinical evaluation with the use of tools that analyse the various levels of the child’s functioning as fundamental.

Design/methodology/approach

The comprehensive assessment at the Institute of Ortofonologia in Rome provides the ADOS-2 and the Leiter-R for the evaluation of the symptomatology, the severity level, the non-verbal cognitive functioning and the fluid reasoning; the TCE and the UOI are used to identify, respectively, the child’s emotional skills and the ability to understand the intentions of others, as precursors of the theory of mind. Within this assessment, the Brief-P, the Short Sensory Profile and the RBS are also included for the evaluation of executive functions, sensory pattern and of restricted and repetitive behaviours, as observed by parents.

Findings

How to define a reliable development profile, which allows to plan a specific intervention calibrated on the potential of the child and on his development trajectory, is described. Two clinical cases are also presented.

Originality/value

The entire process is aimed both at a detailed assessment of the child’s functioning and at identifying a specific therapeutic project and predictive factors for achieving an optimal outcome.

Details

Advances in Autism, vol. 6 no. 2
Type: Research Article
ISSN: 2056-3868

Keywords

Article
Publication date: 4 January 2016

Hans P. Giltaij, Paula S. Sterkenburg and Carlo Schuengel

The purpose of this paper is to describe the mental and intellectual developmental status of children with combined intellectual disabilities, reactive attachment disorder (RAD)…

Abstract

Purpose

The purpose of this paper is to describe the mental and intellectual developmental status of children with combined intellectual disabilities, reactive attachment disorder (RAD), and/or disinhibited social engagement disorder (DSED), and to describe the presence of comorbid diagnoses.

Design/methodology/approach

The study included 55 children that were referred for psychiatric consultation due to low intellectual functioning (borderline or mild; IQ 50-84). Attachment diagnoses were based on the Clinical Observation of Attachment (COA) procedure. Development was measured with the Dutch version of the Vineland Adaptive Behaviour Scales. Psychopathology was measured with the DISC-IV and AUTI-R. Emotional and behavioural problems were measured with the Dutch version of the Developmental Behaviour Checklist.

Findings

Children with and without attachment diagnoses had similar IQs. However, children with disturbed attachment, RAD, and/or DSED had lower levels of adaptive behaviour than those without attachment diagnoses. No comorbidity was associated with autism or ADHD. However, 80 per cent of children with RAD and/or DSED were also diagnosed with ADHD. Parents of children with DSED often reported disruptive anti-social behaviour.

Practical implications

Children with RAD and/or DSED may have unused developmental potential. Disturbed attachment should be considered in some cases of ADHD.

Originality/value

Findings suggested that diagnostic expertise provided added value for distinguishing disordered attachment in young clients with intellectual disability.

Details

Advances in Mental Health and Intellectual Disabilities, vol. 10 no. 1
Type: Research Article
ISSN: 2044-1282

Keywords

Article
Publication date: 1 March 2013

Ernest Gralton

This is an invited short overview from a clinician working in a national secure inpatient setting which aims to focus on inpatient forensic services for adolescents with…

977

Abstract

Purpose

This is an invited short overview from a clinician working in a national secure inpatient setting which aims to focus on inpatient forensic services for adolescents with developmental disabilities.

Design/methodology/approach

The paper gives a brief overview of the needs of this population and the requirements for inpatient assessment and treatment.

Findings

This is a complex population who are referred relatively late to inpatient services, often after recurrent failings in residential services where mental disorders are commonly unrecognised. Comprehensive multidisciplinary assessment and treatment are required for this group.

Originality/value

This paper will be useful to a range of professionals dealing with adolescents with developmental disabilities who are engaging in offending and other high risk behaviours.

Details

Advances in Mental Health and Intellectual Disabilities, vol. 7 no. 2
Type: Research Article
ISSN: 2044-1282

Keywords

Open Access
Article
Publication date: 12 November 2019

Henny Kupferstein

The purpose of this paper is to explore why autistic people and their caregivers choose interventions other than applied behavior analysis (ABA), and how their decision impacts…

12859

Abstract

Purpose

The purpose of this paper is to explore why autistic people and their caregivers choose interventions other than applied behavior analysis (ABA), and how their decision impacts them over their lifespan. The focus group was divided into those who pursued augmentative and alternative communication (AAC)-based supports, received ABA, selected other interventions or received no intervention at all. The reported posttraumatic stress symptoms (PTSS) of ABA recipients were compared to non-ABA recipients in order to evaluate the long-term impacts of all intervention types. Using a mixed-method thematic analysis, optional comments submitted alongside a quantitative online survey were reviewed for emergent themes. These comments augmented the survey Likert scores with a qualitative impression of the diverse intervention-related attitudes among participants. Investigating the lived experiences of autism intervention recipients illuminated the scope of the long-term impacts of each intervention that was chosen. Overall, autistics who received no intervention fared best, based on the lowest reported PTSS. These findings may inform the potential redesign of autism interventions based on the firsthand reported experiences and opinions of autistics.

Design/methodology/approach

The aim of this study was to conduct research that is both question-driven and data-driven to aid in the analysis of existing data (Van Helden, 2013). In the research question-driven approach, the independent variables were the intervention type and duration of exposure relative to lifespan; the dependent variables were the PTSS severity score and binary indicator of meeting PTSS criteria. The analyses that were conducted included linear regression analyses of severity score on intervention type and duration, and χ2 tests for independence of the probabilities of PTSS criterion satisfaction and intervention type. This experiment was designed to test the data-driven hypothesis that the prevalence and severity of PTSS are dependent on the type of autism intervention and duration of exposure. After reviewing the primary data set, the data-driven inquiry determined that the sample for secondary analysis should be categorized by communication-based vs non-communication-based intervention type in order to best complement the limitations and strengths of the published findings from the primary analysis.

Findings

Autistics who received no intervention had a 59 percent lower likelihood of meeting the PTSS criteria when compared to their ABA peers, and they remained 99.6 percent stable in their reported symptoms throughout their lifespan (R2=0.004). ABA recipients were 1.74 times more likely to meet the PTSS criteria when compared to their AAC peers. Within the 23 percent who selected an intervention other than ABA, consisting of psychotherapy, mental health, son-rise and other varying interventions, 63 percent were asymptomatic. This suggests that the combined benefits of communication-based interventions over behaviorism-influenced ABA practices may contribute to enhanced quality of life. Although not generalizable beyond the scope of this study, it is indicated from the data that autistics who received no intervention at all fared best over their lifetimes.

Research limitations/implications

The obvious advantage of a secondary analysis is to uncover key findings that may have been overlooked in the preliminary study. Omitted variables in the preliminary data leave the researcher naive to crucially significant findings, which may be mitigated by subsequent testing in follow-up studies (Cheng and Phillips, 2014, p. 374). Frequency tables and cross-tabulations of all variables included in the primary analysis were reproduced. The secondary analysis of existing data was conducted from the design variables used in the original study and applied in the secondary analyses to generate less biased estimates (Lohr, 2010; Graubard and Korn, 1996). Inclusion criteria for each intervention group, PTSS scores and exposure duration, were inherited from the primary analysis, to allow for strategic judgment about the coding of the core variables pertaining to AAC and PTSS. The data sample from 460 respondents was reduced to a non-ABA group of n=330. An external statistician scored each respondent, and interrater reliability was assessed using Cohen’s κ coefficient (κ=1).

Practical implications

Including the autistic voice in the long-term planning of childhood interventions is essential to those attempting to meet the needs of the individuals, their families and communities. Both parents and autistic participant quotes were obtained directly from the optional comments to reveal why parents quit or persisted with an autism intervention.

Social implications

Practitioners and intervention service providers must consider this feedback from those who are directly impacted by the intervention style, frequency or intensity. The need for such work is confirmed in the recent literature as well, such as community-based participatory research (Raymaker, 2016). Autistics should be recognized as experts in their own experience (Milton, 2014). Community–academic partnerships are necessary to investigate the needs of the autistic population (Meza et al., 2016).

Originality/value

Most autistic people do not consider autism to be a mental illness nor a behavior disorder. It is imperative to recognize that when injurious behavior persists, and disturbance in mood, cognition, sleep pattern and focus are exacerbated, the symptoms are unrelated to autism and closely align to the diagnostic criteria for posttraumatic stress disorder (PTSD). When PTSD is underdiagnosed and untreated, the autistic individual may experience hyperarousal and become triggered by otherwise agreeable stimuli. Since autism interventions are typically structured around high contact, prolonged hours and 1:1 engagement, the nature of the intervention must be re-evaluated as a potentially traumatic event for an autistic person in the hyperarousal state. Any interventions which trigger more than it helps should be avoided and discontinued when PTSS emerge.

Details

Advances in Autism, vol. 6 no. 1
Type: Research Article
ISSN: 2056-3868

Keywords

Article
Publication date: 21 June 2023

Elif Yildirim

Recent evidence indicates an improving effect of the co-occurrence of autistic traits and psychotic symptoms on social cognition, but there is no agreement on the effect of the…

Abstract

Purpose

Recent evidence indicates an improving effect of the co-occurrence of autistic traits and psychotic symptoms on social cognition, but there is no agreement on the effect of the interaction between autistic traits and psychotic proneness on empathy. The aim of this study is to examine the effect of the interaction between autistic traits and positive psychotic experiences on cognitive and affective empathy.

Design/methodology/approach

The sample consisted of 420 adults aged between 18 and 60. Assessments were administered anonymously online. Empathic abilities were evaluated by the Interpersonal Reactivity Index (IRI). While Autism Spectrum Quotient (AQ) was applied to measure autistic traits, The Community Assessment of Psychic Experience (CAPE) was used as a measurement of positive psychotic experiences.

Findings

A series of regression analyses showed that although AQ and CAPE scores were not correlated with cognitive-IRI, the interaction between these scores predicted cognitive-IRI scores. It was found that the personal distress subscale of IRI was significantly associated with AQ, but this relationship was moderated by CAPE scores.

Originality/value

These findings provide a different perspective on understanding social cognitive impairments in autism, which may have potential clinical implications. Findings also contribute to explaining the individual differences in empathic abilities.

Details

Advances in Autism, vol. 9 no. 4
Type: Research Article
ISSN: 2056-3868

Keywords

Article
Publication date: 2 January 2018

Henny Kupferstein

The purpose of this paper is to examine the prevalence of posttraumatic stress symptoms (PTSS) in adults and children who were exposed to applied behavior analysis (ABA) autism…

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Abstract

Purpose

The purpose of this paper is to examine the prevalence of posttraumatic stress symptoms (PTSS) in adults and children who were exposed to applied behavior analysis (ABA) autism early childhood intervention. Using an online questionnaire to survey autistic adults and caregivers of autistic children, the author collected data from 460 respondents on demographics, intervention types, and current pathological behaviors with symptom severity scales. This study noted PTSS in nearly half of ABA-exposed participants, while non-exposed controls had a 72 percent chance of being asymptomatic. ABA satisfaction ratings for caregivers averaged neutral or mild satisfaction. In contrast, adult satisfaction with ABA was lower on average and also tended to take on either extremely low or extremely high ratings. Exposure to ABA predicted a higher rate and more severe PTSS in participants, but the duration of exposure did not affect satisfaction with the intervention in caregivers.

Design/methodology/approach

Participants were recruited for an online survey through social media networks, adult gatherings, social skills groups, and autism support groups nationwide. Adult inclusion criteria consisted of autism – diagnosed or self-diagnosed – and an age of 18 or older. A total of 460 respondents, consisting of autistic adults and caregivers of autistic children, completed an online survey. The caregiver entries (n=217) concerned 79 percent male children, 21 percent female children (male to female 3.80:1), and one MtF transgender child, ages 1-38, with an average age at diagnosis of 4.69 years. The adult entries (n=243) concerned 30 percent males, 55 percent females (male to female 0.55:1), and 14 percent other gender, ages 18-73, with an average age at diagnosis of 25.38 years.

Findings

Nearly half (46 percent) of the ABA-exposed respondents met the diagnostic threshold for PTSD, and extreme levels of severity were recorded in 47 percent of the affected subgroup. Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA. Adults and children both had increased chances (41 and 130 percent, respectively) of meeting the PTSD criteria if they were exposed to ABA. Both adults and children without ABA exposure had a 72 percent chance of reporting no PTSS (see Figure 1). At the time of the study, 41 percent of the caregivers reported using ABA-based interventions.

Originality/value

The majority of adult respondents were female, raising questions about the population of online autistic survey respondents. Further, the high numbers of reported gender other than male or female in the adult respondents, as well as at least on MtF child from the caregiver respondents indicates that future studies should consider these intersections. These accompanied significant discrepancies in reporting bias between caregivers and ABA-exposed individuals, which highlight the need for the inclusion of the adult autistic voice in future intervention design. Based on the findings, the author predicts that nearly half of ABA-exposed autistic children will be expected to meet the PTSD criteria four weeks after commencing the intervention; if ABA intervention persists, there will tend to be an increase in parent satisfaction despite no decrease in PTSS severity.

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