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Preliminary Findings From a Nationwide, Multicenter Mental Health Service for Adults and Older Adolescents With Autism Spectrum Disorder and ID

HELVERSCHOU, Sissel Berge
BAKKEN, Trine Lise
BERGE, Heidi
BJØRGEN, Tale Gjertine
BOTHEIM, Henrik
HELLERUD, Jane Askeland
HELSET, Ingunn
ODDBJØRN, Hove
JOHANSEN, Per Anders
KILDAHL, Arvid Nikolai
LUDVIGSEN, Linn Beate
NYGAARD, Sissel
RYSSTAD, Anne
WIGAARD, Elisabeth
HOWLIN, Patricia
2020

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Background: The identification and treatment of psychiatric disorders in individuals with autism spectrum disorders (ASD) and ID presents many challenges. We describe the development of a professional network, together with a standardized protocol for clinical assessment, designed to promote clinical competence and professional development in eight clinical centers responsible for providing mental health services to autistic individuals with ID across all four health regions of Norway. Specic aims to describe: (1) patterns of psychiatric and behavior problems in patients treated by the network, (2) patterns of change over time, and (3) the relationship between psychiatric disorders and behavior problems.


Method: A standardized protocol was used to assess individual progress in 132 patients (inpatients and outpatients) with autism and ID over 2 years (at referral (T1), after 1 year (T2), and after 2 years (T3)). Changes in psychiatric symptoms and behavior problems were assessed with the Psychopathology in Autism Checklist (PAC) and Aberrant Behavior Checklist (ABC).


Results: Patients showed signicant (p < .001) improvements from T1 to T2 on the psychosis, depression and anxiety subscales of the PAC, but no signicant improvement on the obsessive compulsive disorder (OCD) subscale. Improvements were maintained from T2 to T3. Patients showed signicant (p < .01) improvements on the ABC total score and on all ABC subscales except inappropriate speech from T1 to T2; these improvements were maintained from T2 to T3.


Discussion: The combination of a professional network and a standardized protocol for clinical assessment has promise as a strategy for improving professional competence and facilitating specialized mental health services for autistic individuals with ID and psychiatric disorders across an extensive geographical area.

Contingent Electric Shock as a Treatment for Challenging Behavior for People With Intellectual and Developmental Disabilities: Support for the IASSIDD Policy Statement Opposing Its Use

ZARCONE, Jennifer R
MULLANE, Michael P
LANGDON, Peter E
BROWN, Ivan
2020

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Issues: The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is an international group of researchers, clinicians, students, parents, and self-advocates that promotes worldwide research and exchange of information on intellectual and developmental disabilities. IASSIDD recently developed a policy statement regarding their opposition to the use of contingent electric skin shock (CESS) with individuals with challenging behavior and intellectual and developmental disabilities. To support the policy, the available literature was reviewed to evaluate the efficacy, side effects, generalization, and long-term effectiveness of the procedure as an intervention for challenging behavior.


Findings: The review provides a history that demonstrates that, although CESS can decrease the frequency of challenging behavior, it comes at a cost in terms of physical and emotional side effects, and questions remain regarding the long-term effectiveness of the procedure. In addition, we raise several ethical and methodological issues that make the research on the use of CESS even more concerning.


Conclusions: Although research continues in some countries, these studies are now rare. In fact, in the United States, the Food and Drug Administration has just banned the use of such devices with individuals with self-injury and aggression. It is hoped that, because there are many other forms of treatment that have shown to be effective for severe challenging behavior, we can completely avoid the use of CESS.

Developing a Logic Model for the Triple-C Intervention: A Practice-Derived Intervention to Support People with Intellectual Disability and Challenging Behavior

TOURNIER, Tess
HENDRIKS, Alexander H C
JAHODA, Andrew
HASTINGS, Richard P
EMBREGTS, Petri J C M
2020

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Partly due to a lack of evidence-based methods to support people with intellectual disability (ID) and challenging behavior, their needs are often poorly met. One way to generate rapid evidence is to systematically describe and monitor interventions that are considered to be “good practice”—to develop evidence based on practical knowledge. This study describes the Dutch practice-based intervention Triple-C (Client, Coach, Competence). The intervention was developed in practice to support people with severe ID to borderline functioning and challenging behavior. The practice-based nature of Triple-C means that many of the professionals’ actions or activities are often underpinned by their implicit knowledge about the intervention they are delivering. Consequently, as the emphasis is on practice, the professionals can find it difficult to articulate how the intervention is operationalized and positive change achieved. This study aimed to assess the practical knowledge of Triple-C professionals and to develop an understanding of the mechanisms of change for Triple-C to improve understanding and to inform future research about the intervention. Through an iterative process, a logic model was developed to describe the intervention and its underlying assumptions. The development of the logic model was shaped using interviews with the founders, focus groups with support staff, psychologists, managers and members of the board of a service provider, and the analysis of published accounts of the Triple-C intervention. Data gathered from these sources were analyzed using content analysis. The logic model of the Triple-C intervention provides insight into the key elements of the approach, such as the need for unconditional supportive relationship and carrying out meaningful activities. Moreover, the potential relationship with existing evidence-based interventions such as Positive Behavioral Support and Active Support are described. Dening the underlying logic of a practice-based intervention like Triple-C is an important first step toward producing an evidence base for interventions developed from clinical practice.

Adapting and pre-testing the World Health Organization’s Caregiver Skills Training programme for autism and other developmental disorders in a very low-resource setting: Findings from Ethiopia

TEKOLA, Bethelem
et al
May 2019

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The World Health Organization’s Caregiver Skills Training programme for children with developmental disorders or delays teaches caregivers strategies to help them support their child’s development. Ethiopia has a severe lack of services for children with developmental disorders or delays. This study explored the perspectives of Ethiopian caregivers, professionals and other stakeholders to inform adaptation and implementation of the World Health Organization’s Caregiver Skills Training in Ethiopia. Data collection included (1) a consultation and review, comprising stakeholder meetings, review of draft Caregiver Skills Training materials and feedback from Ethiopian Master Trainees and (2) a pre-pilot including quantitative feasibility and acceptability measures and qualitative interviews with caregivers (n = 9) and programme facilitators/observers (n = 5).

 

Autism 2020, Vol. 24(1) 51–63

https://doi.org/10.1177/1362361319848532

AbilityNet Factsheets

ABILITYNET
2019

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AbilityNet’s Factsheets are free to download and provide advice and information about how computers and other digital technologies can help people with a range of conditions and impairments. 

Written by the AbilityNet specialist team of assessors and accessibility consultants they give detailed information on a wide range of assistive technology, services and related organisations. Many give a step by step guide to help you set up your computer and software (assistive technology) to meet your individual requirements.

 

Factsheets include

Creating Accessible Documents

Autism and Computers

Telephones and Mobile Phones

Communication Aids

Disability and Employment

Stroke and Computing

Multiple Sclerosis and Computing

Osteoarthritis and Computing

Vision impairment and Computing

Voice Recognition - An Overview

Hearing Loss and Computing

An introduction to screen readers

Parkinson's and Technology

Dementia and Computing

Dyslexia and Technology

Learning Difficulties and Computing

 

The contacts provided are UK based.

Adolescents with disabilities: Enhancing resilience and delivering inclusive development

JONES, Nicola
PRESLER-MARSHALL, Elizabeth
STAVROPOLULOU, Maria
July 2018

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This report takes stock of evidence from LMICs, drawing on findings from a thematic evidence review combined with emerging findings from the Gender and Adolescence: Global Evidence (GAGE) survey and qualitative research baseline studies in Bangladesh, Ethiopia, Jordan and Palestine. These interviews involved more than 6,000 adolescents and their caregivers – including approximately 600 girls and boys with physical, visual, hearing or intellectual impairments, alongside service providers and policy actors. The report draws attention to the multiple and intersecting capabilities that need to be supported in order for adolescents with disabilities in LMICs to reach their full potential. It goes beyond a focus on their access to education and health services, and also considers their rights to psychosocial wellbeing, protection from violence, mobility and opportunities to participate within their communities, as well the skills, assets and support they need to become economically independent once they transition into adulthood. 

Gender and diagnostic impact on everyday technology use: a differential item functioning (DIF) analysis of the Everyday Technology Use Questionnaire (ETUQ)

KOTTORP, Anders
MALINOWSKY, Camilla
LARSSON-LUND, Maria
NYGARD, Louise
May 2018

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Background: As the use of everyday technology is increasingly important for participation in daily activities, more in-depth knowledge of everyday technology use in relation to diagnosis and gender is needed. The purpose of this study was to investigate the stability of the perceived challenge of a variety of everyday technologies across different samples of varying diagnoses including both males and females.

 

Methods: This cross-sectional study used 643 data records from clinical and research samples, including persons with dementia or related disorders, acquired brain injury, intellectual disability, various mental or medical disorders, and adults without known diagnoses. The Everyday Technology Use Questionnaire, comprising 93 everyday technology artifacts and services (items) measuring the level of everyday technology challenge and relevance of and perceived ability to use these was used for data gathering. A two-faceted Rasch model in combination with differential item functioning (DIF) analyses were used for comparing item hierarchies across samples.

 

Results: Only three items (3.2%) demonstrated a clinically relevant DIF by gender, and nine items (9.7%) by diagnosis.

 

Discussion: The findings support a stable hierarchy of everyday technology challenge in home and community that can facilitate planning of an accessible and inclusive society from a technological departure point

African Journal of Disability Vol 7 (2018)

2018

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This journal provides

  • Nineteen original research articles on a variety of topics including the cost of raising a child with autism, experiences of care givers to stroke survivors, dyslexic's learning experiences, communication rehabilitation, disability and food security, hearing children of deaf parents and rehabilitation of stroke survivors, disability policy, learning for deaf learners, aquatic based interventions for children with cerebral palsy, evaluation of community based rehabilitation programmes, the impact of stroke and barriers to the implementation of inclusive education.
  • Seven review articles: Intellectual disability rights and inclusive citizenship in South Africa: What can a scoping review tell us?; The benefits of hydrotherapy to patients with spinal cord injuries; Simple ideas that work: Celebrating development in persons with profound intellectual and multiple disabilities; The relationship between social support and participation in stroke: A systematic review; Parents of children with disabilities: A systematic review of parenting interventions and self-efficacy; Implementation of the 2006 Convention on the Rights of Persons with Disabilities in Zimbabwe: A review; Part 1: A review of using photovoice as a disability research method: Implications for eliciting the experiences of persons with disabilities on the Community Based Rehabilitation programme in Namibia
  • There is an opinion paper entitled - Deafening silence on a vital issue: The World Health Organization has ignored the sexuality of persons with disabilities
  •  There is a case study - Lessons from the pilot of a mobile application to map assistive technology suppliers in Africa

Satellite classes: A promising model for educating children and young people on the autism spectrum

CROYDEN, Abigail
et al
2017

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Results of research into attempts to provide the best of both mainstream and specialist education for autistic children are presented. The ‘satellite class’ model of supported inclusion is where the strengths of a special school education are kept in place for selected autistic pupils as they transfer to dedicated classes within mainstream ‘host schools’. The schools studied were all within the London borough of Tower Hamlets, UK.

Living in fear: experiences of hate crime and discrimination amongst people with learning disabilities and autism

BRADSHAW, Jill
RICHARDSON, Lisa
May 2016

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The views and experiences of people with learning disabilities and autism living within one UK unitary authority (Medway, Kent) were explored.  Aspects investigated were: how many people victimisation affects; who is affected by victimisation; what type of things happen to them; and the impact of victimisation on their quality of life.  The focus groups were: 7 groups with people with intellectual disability and autism (31 people); 4 groups with family and paid carers (33 people).  A survey was completed by: people with intellectual disabilities and autism (220 surveys) and family or paid carers (35 surveys).  27 individual interviews were carried out. 

Inclusion in education : towards equality for students with disability

COLOGON, Kathy
2013

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All children in Australia have the right to an inclusive education. However, there are many barriers to the realisation of this right in the lived experience of children and families. Current efforts towards upholding the rights of all children are impeded by a lack of understanding of inclusive education and misappropriation of the term. Additional barriers include negative and discriminatory attitudes and practices, lack of support to facilitate inclusive education, and inadequate education and professional development for teachers and other professionals. Critical to addressing all of these barriers is recognising and disestablishing ableism in Australia.

This paper draws from recent research in addressing gaps in current understanding to provide a firm basis from which to inform research based policy development. Taking a rights-based approach, the paper focuses on developing a clear understanding of inclusive education and identifying strategies to enhance the education of all children in Australia

Problem Behaviour and Academic Grade Level Performance of Adjudicated Children with Juvenile Delinquency

VENKATESAN, S
SWARNALATHA, G
2013

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Purpose: This paper attempted to profile the contemporary grade level academic performance as well as the frequency, spread and intensity of problem behaviour in relation to a few associated variables, of children adjudged as juvenile delinquents in India.

 

Method: A cross-sectional exploratory survey design was employed, with randomised convenience sampling of 66 inmates, between 9 and 18 years of age, from two representative Observation Homes. To ascertain their current grade levels, a criterion referenced ‘Grade Level Assessment Protocol’ was prepared exclusively for this study. Another standardised ‘Behaviour Assessment Scale for Indian Children with Mental Retardation, Part B’ was used to profile their problem behaviour.

 

Results: The contemporary academic performance results satisfy the conventional two-grade discrepancy criteria, usually postulated for identifying children with learning disabilities. Among the associated variables examined in this study, inmates who were booked under sections of the Indian Penal Code showed significantly greater academic grade discrepancy compared to the other children. Similarly, poorer academic performance, greater grade discrepancy, as well as higher frequency, spread and intensity of reported problem behaviour were found among children from intact family backgrounds, where parents were illiterates or educated below primary school level, and more among boys than girls, and among those in the 10-12 year age group.

 

Conclusions: While these are tentative findings, they call attention to the need for extensive research on the possible links between academic performance, under achievement and learning disabilities, and juvenile delinquency in this country.

Autism : a guide for criminal justice professionals

THE NATIONAL AUTISTIC SOCIETY
2008

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"This guide provides background information about autistic spectrum disorders. It aims to assist all professionals working in the criminal justice system, who may come into contact with someone who has autism, particularly police officers, solicitors, barristers, magistrates, justices of the peace, the judiciary and the courts"

Psychosocial support for families of children with autism

GUPTA, Ashum
SINGHAL, Nidhi
2005

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[Author's abstract]: This paper draws attention to the stress levels and coping strategies used, in the families of children with autism. Differences in the stressors perceived and coping strategies adopted by the father, mother and siblings of a child with autism have been discussed. Given that pre-intervention parental stress levels predict the success of early intervention programmes and determine the prognosis, the paper highlights the importance as well as the lack of providing psychosocial support to the families of children with autism. The authors have illustrated various ways of delivering effective support services for parents. The article progresses from child-centred, professional dependence for service delivery to developing strategies that are family centred and encourage active participation of parents of children with autism themselves. The paper also draws attention to the prevailing scenario of autism in India.

Music therapy and leisure for persons with disabilities

BARKSDALE, Alicia L
2003

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This book explores the use of music therapy in school and community settings to enhance the development of independent leisure skills with a variety of client populations, including children, adolescents, adults, and the elderly with mental health needs, developmental and learning disabilities, Alzheimer’s disease and other aging-related conditions, substance abuse problems, brain injuries, and physical disabilities

Autism resources

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This website gives guidance about autism and includes online publications. It has a section on frequently asked questions and a booklist that points to resources that are related to autism and learning disabilities

Autism key

AUTISM KEY

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This website was created by and for parents of children with autism. It offers support, encouragement and access to new resources and information on autism and related issues

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