scholarly journals Lesson study as a way of improving school-day navigation for pupils with severe intellectual disability and autism

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Kamilla Klefbeck
Keyword(s):  
Learning Disabilities ◽  
Intellectual Disability ◽  
Lesson Study ◽  
Autism Spectrum ◽  
Central Coherence ◽  
Variation Theory ◽  
Content Type ◽  
Severe Intellectual Disability ◽  
School Day

PurposeThis research explores lesson study as a way to enhance the quality of teaching for pupils with learning disabilities and autism spectrum disorder by observing changes to one pupil's (Wilma) active educational participation. The study also investigates if and in what ways the professional development impacted teaching practices.Design/methodology/approachFive teachers met with the author on four occasions. Between these meetings, the teachers delivered the lessons they had planned together. The author video recorded the meetings to discern how the teachers' expressions developed. The author shared their thoughts with another researcher to enable an interrater validity examination.FindingsThe implementation of the lesson study vehicle enabled the teachers to transform their thinking from mainly focusing on pupils' deficiencies to instead focusing on their strengths. A relationship was found between teachers' understanding of central coherence, their skills in adapting received instructions and pupils' abilities to process and contextualize information or discern the whole picture.Research limitations/implicationsResearch that involves teachers in the learning process emphasizes the relation between teachers’ thinking and their potential to enable the contextualized inclusion of pupils with learning disabilities.Originality/valueThis research offers important insights into how school-day navigation for pupils with severe intellectual disability and autism can be understood through the lens of variation theory; the teachers' repeated and adjusted use of the frame on the schedule strip enabled Wilma to discern what would happen next during the school day.

Residential placement and quality of life for adults with severe autism spectrum disorders and severe-to-profound intellectual disabilities

2017 ◽  
Vol 3 (4) ◽  
pp. 187-205
Author(s):  
Giuliana Galli Carminati ◽  
Federico Carminati ◽  
Rachel Lehotkay ◽  
Erica Nora Lorincz ◽  
Viviane Subirade-Jacopit ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Autism Spectrum Disorders ◽  
Living Arrangements ◽  
Rating Scale ◽  
Autism Spectrum ◽  
Aberrant Behavior ◽  
Content Type ◽  
Severe Intellectual Disability ◽  
Spectrum Disorders

Purpose The purpose of this paper is to evaluate the relationship between some main characteristics of different living arrangements and the quality of life (QoL) of their users with severe intellectual disability and low-functioning autism spectrum disorders. Design/methodology/approach Study participants were assessed for ASD severity through the Childhood Autism Rating Scale or the Vineland Adaptive Behavior Scales (VABS): for behavioral problems with the aberrant behavior checklist (ABC); for perception of efficacy and satisfaction with care, through an adapted Visual Analogue Scale; and for QoL with the QoL inventory in residential environments (validated in French as Inventaire de la Qualité de Vie en Milieu Résidentiel). Because the goal was to define a “residential profile (RP),” the authors evaluated each participating residence with the Working Methods Scale and the questionnaire on residential parameters. Findings The RP allowed for the classification of the residences into three clusters. The authors found no clear relationship between QoL and the RP clusters, but the authors found the RP clusters to be significantly correlated with ABC factors F1 (irritability, agitation, crying) and F2 (lethargy, social withdrawal), and VABS scores for living, socialization, and motor skills. Originality/value RPs were more strongly correlated with ABC items and the ability to cope with everyday life than with QoL. The authors hypothesize that RP is correlated with both aberrant behavior and the autonomy of residents and that QoL remains relatively stable. Therefore, RP is correlated with the status of the residents; however, this appears not to be correlated with their QoL.

scholarly journals A phenomenological approach to diagnosing psychosis in autism spectrum disorder and intellectual disability: a case series

2018 ◽  
Vol 4 (2) ◽  
pp. 39-48
Author(s):  
Rahul Rai ◽  
Samuel Tromans ◽  
Chaya Kapugama ◽  
Verity Chester ◽  
Ignatius Gunaratna ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Autism Spectrum Disorder ◽  
Intellectual Disability ◽  
Case Series ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Psychotic Symptoms ◽  
Related Case ◽  
Content Type

Purpose The diagnosis of psychosis in individuals with autism spectrum disorder (ASD) poses a unique clinical challenge. The presence of intellectual disability (ID) further complicates the diagnostic picture. Reliable and timely diagnosis of psychosis in such individuals minimises the duration of untreated psychotic symptoms and the subsequent impact on the quality of life of the patients concerned. The paper aims to discuss this issue. Design/methodology/approach The authors present four patients with psychosis, ASD and ID, who have received care within forensic mental health and ID settings. These examples demonstrate the interaction between these conditions, as well as issues pertaining to diagnosis and management. Findings In all four patients, sustained use of antipsychotic medication was objectively associated with an improvement in psychotic symptoms and quality of life. In instances where autistic phenomena were accentuated upon development of psychosis, such features returned to the baseline levels evident prior to the onset of psychosis. Practical implications The discussion and related case examples could improve the understanding of the possibility of psychosis in individuals with ASD and ID, and increase awareness of this diagnostic possibility among healthcare professionals. Originality/value This is the first published case series illustrating the challenges of diagnosing psychosis in individuals with ASD and ID.

Examining the experiences and quality of life of patients with an autism spectrum disorder detained in high secure psychiatric care

2017 ◽  
Vol 3 (1) ◽  
pp. 3-14 ◽  
Author(s):  
David Murphy ◽  
Hannah Mullens
Keyword(s):  
Quality Of Life ◽  
Autism Spectrum Disorder ◽  
Psychiatric Care ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Living Situation ◽  
Diverse Range ◽  
Content Type ◽  
Secure Psychiatric Care

Purpose Although individuals with an autism spectrum disorder (ASD) represent a small proportion of forensic psychiatric patients as a group they present with specific difficulties and needs. There is also evidence that if detained individuals with an ASD experience particular difficulties within custodial environments as a result of a mismatch between the difficulties associated with their ASD and the environmental demands. The purpose of this paper is to explore the experience of individuals with an ASD admitted to a high secure psychiatric care (HSPC) hospital. Design/methodology/approach Using both a semi-structured interview and a quality of life self-report measure (the Lancashire Quality of Life Profile) the experiences and views of seven patients with an ASD detained in one HSPC hospital were qualitatively explored. Findings Whilst a diverse range of negative and positive aspects of being within HSPC were identified by patients interviewed, those with prison experience thought HSPC was a less stressful environment with more therapeutic opportunities. As a group, patients with an ASD reported a similar or significantly better quality of life in many domains (global, leisure, financial and living situation) compared to other detained forensic patient groups. Practical implications Although most patients with an ASD interviewed reported positive experiences, there are a number of practical improvements that could be made within the hospital to reduce experienced stress levels and perhaps improve therapeutic outcomes. Originality/value Within the context of the Department of Health's autism strategy (2010) and subsequent update think autism (2014), the survey highlights continued ASD awareness training for staff as important. In responding to the risks and needs of individuals with an ASD in HSPC there is further support for the development of an ASD specialist service.

scholarly journals Learning disability market position statements, are they fit for purpose?

2017 ◽  
Vol 22 (4) ◽  
pp. 198-205 ◽  
Author(s):  
Sarah Broadhurst ◽  
Keri Landau
Keyword(s):  
Learning Disabilities ◽  
Learning Disability ◽  
Good Practice ◽  
Market Position ◽  
Content Type ◽  
Fit For Purpose ◽  
Potential Impact ◽  
Senior Officers ◽  
Market Shaping

Purpose The purpose of this paper is to review whether current learning disability market position statements (MPS) are actually helping to shape the market and explore their implications for people with learning disabilities and their families. Design/methodology/approach Published learning disability MPS were identified via the Institute of Public Care’s MPS database. The quality of the MPS was analysed using a good practice checklist developed by a range of stakeholders. Findings Learning disability MPS are not currently fit for purpose. They demonstrate that local authorities are not fully engaging in their market-shaping duties, as required under The Care Act 2014. It is suggested that this is in part due to the lack of recognition that market shaping is a council-wide responsibility and can only be successful if senior officers across the council (and their partners) acknowledge this and are held accountable. Unless this happens, people with learning disabilities will continue to lack the enablers that support them to lead the lives they choose in their communities. Originality/value This is the first review of the quality and potential impact of learning disability MPS.

IL1RAPL1 Gene Deletion in a Female Patient with Developmental Delay and Continuous Spike-Wave during Sleep

2021 ◽  
Author(s):  
Evan Jiang ◽  
Mark P. Fitzgerald ◽  
Katherine L. Helbig ◽  
Ethan M. Goldberg
Keyword(s):  
Intellectual Disability ◽  
Developmental Delay ◽  
Synapse Formation ◽  
De Novo ◽  
Interleukin 1 ◽  
Autism Spectrum ◽  
Neurological Dysfunction ◽  
Behavioral Disorder ◽  
Clinical Genetic ◽  
Severe Intellectual Disability

AbstractInterleukin-1 receptor accessory protein-like 1 (IL1RAPL1) encodes a protein that is highly expressed in neurons and has been shown to regulate neurite outgrowth as well as synapse formation and synaptic transmission. Clinically, mutations in or deletions of IL1RAPL1 have been associated with a spectrum of neurological dysfunction including autism spectrum disorder and nonsyndromic X-linked developmental delay/intellectual disability of varying severity. Nearly all reported cases are in males; in the few reported cases involving females, the clinical presentation was mild or the deletion was identified in phenotypically normal carriers in accordance with X-linked inheritance. Using genome-wide microarray analysis, we identified a novel de novo 373 kb interstitial deletion of the X chromosome (Xp21.1-p21.2) that includes exons 4 to 6 of the IL1RAPL1 gene in an 8-year-old girl with severe intellectual disability and behavioral disorder with a history of developmental regression. Overnight continuous video electroencephalography revealed electrical status epilepticus in sleep (ESES). This case expands the clinical genetic spectrum of IL1RAPL1-related neurodevelopmental disorders and highlights a new genetic association of ESES.

Commentary on “The experiences of older carers of people with learning disabilities: ‘I just carry on with it’”

2021 ◽  
Vol 26 (1) ◽  
pp. 58-62
Author(s):  
Jan Sunman
Keyword(s):  
Quality Of Life ◽  
Learning Disabilities ◽  
Lived Experiences ◽  
Design Methodology ◽  
Policy And Practice ◽  
Content Type ◽  
The Voice

Purpose The purpose of this paper is to provide a commentary on the article by Rachel Forrester-Jones on the experiences of older carers of people with learning disabilities. Design/methodology/approach The commentary reflects on the themes identified in the original article, comparing its findings to the lived experiences of those taking part in older carers’ projects in Oxfordshire, England. Findings Similar broad themes were identified in both samples. Given these findings, the extent to which matters have changed, since the Valuing People work on older carers is considered. Originality/value The paper discusses policy and practice implications to improve the quality of life of older carers and their families and explores how the voice of older carers can be strengthened to enable them to shape practice and policy.

Using Technology to Support Social Competence

2015 ◽  
pp. 336-355
Author(s):  
Brenda Smith Myles ◽  
Jan Rogers ◽  
Amy Bixler Coffin ◽  
Wendy Szakacs ◽  
Theresa Earles-Vollrath
Keyword(s):  
Quality Of Life ◽  
Social Competence ◽  
High Technology ◽  
Autism Spectrum ◽  
Home School ◽  
Relationship Building ◽  
Weak Central Coherence ◽  
Central Coherence ◽  
Evidence Based

Social competence includes a complex set of skills that impacts quality of life across all environments: home, school, employment, and the community. Elements that impact social competence, such as theory of mind, weak central coherence, regulation and relationship building, must be taught to individuals with disabilities, including those with autism spectrum disorder. Evidence-based interventions that incorporate low, medium and high technology have the potential to support skill development in social competence in a meaningful manner. This chapter reviews the concept known as social competence and offers a variety of practices to support its development.

Palliative and end-of-life care for people with learning disabilities

2019 ◽  
pp. 777-784
Keyword(s):  
Learning Disabilities ◽  
Intellectual Disability ◽  
Learning Disability ◽  
End Of Life ◽  
Early Onset ◽  
End Of Life Care ◽  
Life Care ◽  
The World ◽  
The Uk

This chapter highlights some of the issues and challenges which exist in the provision of palliative and end-of-life care for people with learning disabilities and how some of these can be addressed. The challenges fall into four key areas: assessment, communication, consent, and bereavement. The reader is also signposted to websites and resources which are helpful in caring for people with learning disability at the end of their life. Concerns exist around choice and the quality of end-of-life care that people with learning disabilities may be offered. A number of different terms have evolved over the years for ‘learning disability’. Currently this term is used in the UK, but in Europe and in other parts of the world, the term ‘intellectual disability’ is used. Internationally there is a consensus that a learning disability can be identified when the following criteria are present: intellectual impairment (known as reduced IQ), social or adaptive dysfunction combined with reduced IQ, and early onset. It is thought that around 2.5% of the population in the UK has a learning disability, but it has also been predicted that this may increase by 1% per year over the next number of years.

Attachment disorder in autism spectrum disorder and intellectual disability

2019 ◽  
Vol 13 (2) ◽  
pp. 57-66 ◽  
Author(s):  
Arvid Nikolai Kildahl ◽  
Maria Hagen Engebretsen ◽  
Sissel Berge Helverschou
Keyword(s):  
Autism Spectrum Disorder ◽  
Intellectual Disability ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Exclusion Criterion ◽  
Challenging Behaviour ◽  
Attachment Disorders ◽  
Attachment Disorder ◽  
Case Study Methodology ◽  
Content Type

PurposeAutism spectrum disorder (ASD) is an exclusion criterion for one of the two attachment disorders in the DSM 5. However, previous findings indicate that ASD and attachment disorder are unrelated conditions and may co-occur. The purpose of this paper is to explore the diagnostic assessment of an adolescent male with ASD, intellectual disability (ID), severe challenging behaviour and a suspected attachment disorder.Design/methodology/approachCase study methodology was chosen because of its suitability in the exploration of complex clinical phenomena where prior knowledge is sparse.FindingsIt was possible to identify symptoms of attachment disorder in a case involving ASD, ID, anxiety and severe challenging behaviour. The Disturbances of Attachment Interview was particularly useful in this assessment, as was assessment of ASD symptoms and developmental history. Differentiating the two attachment disorders proved challenging.Research limitations/implicationsThere is a need for further research in ASD and attachment disorders not limited by current diagnostic categories.Practical implicationsCo-occurring symptoms of attachment disorder may be identified in individuals with ASD and ID, and exploration of these symptoms in assessments of children and adolescents with ASD/ID and challenging behaviour may be beneficial.Originality/valueThe study adds to previous findings on attachment disorder in ASD, demonstrating that identification of attachment disorder is possible even in the presence of a highly complex clinical picture involving severe challenging behaviour. It may also assist other clinicians in identifying and making more accurate assessment of attachment disorder in ASD and ID.

Use of theoretical concepts in lesson study: an example from teacher training

2015 ◽  
Vol 4 (3) ◽  
pp. 261-273 ◽  
Author(s):  
Daniel Martin ◽  
Anne Clerc-Georgy
Keyword(s):  
Teacher Training ◽  
Lesson Study ◽  
Initial Training ◽  
Primary School Teachers ◽  
Content Type ◽  
Theoretical Concepts ◽  
Initial Teacher Training ◽  
Study Lesson ◽  
Practical Implications

Purpose – The purpose of this paper is to present a lesson study (LS) approach implemented as part of the initial training of primary school teachers in a course on the oversight and accompaniment of learning. This course aims to develop students’ ability to analyse their practice and to shift attention to pupils’ learning processes. Design/methodology/approach – Data were collected on the contribution of the LS system and interaction protocols used in class, according to students. Findings – Qualitative analysis of this data shows the role played by the use of theoretical concepts in the quality of their planning, the depth of their analysis and the quality of their work in class. Practical implications – This work opens avenues for teacher training, in particular in terms of encouraging students to use theoretical concepts to prepare, implement and analyse their teaching. Originality/value – This approach is of interest in that it examines the use of theoretical concepts in a study lesson system during initial teacher training.

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