A mixed-methods examination of the gap between intelligence and adaptive functioning in autistic young adults without intellectual disability

Autism ◽  
2021 ◽  
pp. 136236132110183
Author(s):  
Nicole L Matthews ◽  
Kyla Christenson ◽  
Sarah Kiefer ◽  
Christopher J Smith
Keyword(s):  
Young Adults ◽  
Intellectual Disability ◽  
Statistical Analysis ◽  
Qualitative Analysis ◽  
Independent Living ◽  
Adaptive Functioning ◽  
Parent Report ◽  
Intellectual Ability ◽  
Standardized Assessments ◽  
Service Needs

This study examined adaptive functioning, strategies used to develop adaptive functioning skills, and areas where additional services could benefit autistic young adults without intellectual disability. Participants were 21 autistic young adults and at least one parent of each young adult. Quantitative analyses replicated previous reports of an adaptive functioning disadvantage relative to intellectual functioning such that adaptive functioning standard scores were significantly lower than intelligence quotient scores. Qualitative analysis utilized grounded theory methodology and yielded a conceptual model describing the nature and development of adaptive functioning in this demographic. Together, findings provide a more nuanced understanding of the gap between intellectual and adaptive functioning in autistic young adults without intellectual disability. Lay abstract Adaptive functioning describes the age-appropriate skills necessary for independent living. Research suggests that autistic children, adolescents, and adults who do not have an intellectual disability demonstrate adaptive functioning challenges relative to their intellectual ability. Thus, even though many of these individuals have the intellectual capacity to excel in mainstream educational and vocational settings, their adaptive functioning challenges may serve as an obstacle to independence. The research on adaptive functioning in autistic adults is focused on statistical analysis of standardized assessments (e.g. parent-report on multiple choice questionnaires). Qualitative research that examines the narratives of young adults and their parents is needed to better understand adaptive functioning in young adults and their resulting service needs. This study combined statistical analysis of standardized assessments with qualitative analysis of interview responses from autistic young adults without intellectual disability and their parents. Findings replicated previous reports of adaptive functioning challenges and identified influences on adaptive functioning development, consequences of independence, and service needs. Taken together, findings indicate the need for interventions and services that facilitate adaptive functioning development in autistic adolescents and young adults and provide insight into potential intervention targets and strategies.

scholarly journals How to improve the transition process to independent living for adolescents with profound intellectual disabilities? Experiences from parents and employees.

2020 ◽  
Author(s):  
Eirik Roos ◽  
Erik Sondenaa
Keyword(s):  
Young Adults ◽  
Intellectual Disability ◽  
Independent Living ◽  
Early Stage ◽  
Transition Process ◽  
Main Question ◽  
Burden Of Care ◽  
Subjective Burden ◽  
The Family ◽  
Family Home

Abstract BackgroundThe transition process from the family home to independent living for young adults with profound intellectual disability (PID) becomes delayed. Those families face challenges that exceed those of typical families such as higher objective and subjective burden, more frequent psychological distress and lower social support. The aim of this study was to explore the collaboration process between parents and employees and identify factors that improve the transition with less burden.MethodsA descriptive qualitative study was undertaken with 18 persons (9 parents and 9 employees) interviewed individually and in groups. In accordance with the municipality`s guidelines, families with profound intellectual disability (PID) child should apply for housing, when the child turns 16. The purpose is to ensure interdisciplinary collaboration, information flow and coordinated services according to family’s needs. The main question in the interviews was ‘What was your experience with cooperation in the transition process, and what would you do to improve this process?’ The interviews were analysed with a thematic approach using systematic text condensation.ResultsThe parents experienced a lack of general information about the ‘housing waiting list’, level of services, and the plan for time of moving from the family home, and how to choose where and whom to live with. Parents described that they had an unsustainable burden of care during the waiting period, and a family crisis caused the allocation of an apartment in a group house. Employees shared challenges to meet families’ wishes, as there were too few group homes. They experienced good collaboration with families and said they offered respite care, due to reduce parents’ burden of care. Employees experienced that PID children developed skills, mastery and degrees of independence after completing a residency at the Folk High School.ConclusionsTo improve the transition process from family home to independent living for young adults with PID, the informants highlighted some factors to reduce the burden of care to families: 1) Systematic follow-up program for families to observe their needs at an early stage 2) More available group houses 3) Information about the housing-priorities of the services and 4) Educational preparing programs to families.

Intellectual Disability

2016 ◽  
pp. 220-236
Author(s):  
Jyoti Mishra Pandey ◽  
Preeti Mishra
Keyword(s):  
Mental Health ◽  
Intellectual Disability ◽  
Human Resources ◽  
Social Worker ◽  
Adaptive Functioning ◽  
Intellectual Ability ◽  
Clinical Psychologist ◽  
Team Approach ◽  
Mental Health Profession ◽  
The Family

Intellectual Disability is sub-average intellectual ability with impaired adaptive functioning, which starts before the age of 18. They have IQ below. There are many issues which require attention while dealing with ID like human resources, quality training of clinical psychologists in India, the conflicts among the team approach, acceptance in the family and society and many more. There are 1.5 million people with intellectual disability in India. However, experts working in the field of developmental disabilities feel that prevalence is much higher. The population with ID is increasing but the resources to deal with these issues are few. The mental health profession is a multidisciplinary one. The psychiatrist, the clinical psychologist and the psychiatric social worker all have their significant role in the management of ID. There is a long way to go. There are many things that can be offered but what we need is acceptance in our society of such people and Awareness towards Intervention.

scholarly journals Examining the Effectiveness of Video Instruction on Teaching Daily Living Skills to Adolescents and Young Adults With Intellectual Disability

2018 ◽  
Vol 3 (2) ◽  
pp. 6 ◽  
Author(s):  
Annemarie L. Horn
Keyword(s):  
Young Adults ◽  
Intellectual Disability ◽  
Daily Living ◽  
Independent Living ◽  
Daily Living Skills ◽  
Adolescents And Young Adults ◽  
Video Instruction ◽  
Target Skills ◽  
Based Instruction ◽  
Living Skills

Independently performing essential daily living skills enables individuals to become more self-sufficient adults. Those with intellectual disability (ID) tend to require direct instruction and repetition to successfully aquire everyday tasks. Many adults with ID continue to show deficits in this domain, affecting independent living abilities (Luftig & Muthert, 2005). Video-based instruction holds promise in increasing autonomous functioning while decreasing reliance on staff. This review of the literature examines the effectiveness of using video instruction (VI) to teach daily living skills to adolescents and young adults with ID. Acquisition, generalization, and maintenance of target skills are examined across the literature. A total of 12 empirical articles on VI were reviewed, all published between 2006-2017. Findings support the use of VI when teaching daily living skills to adolescents and adults with mild or moderate ID. Implications for research and practice are offered.

The gap between IQ and adaptive functioning in autism spectrum disorder: Disentangling diagnostic and sex differences

Autism ◽  
2021 ◽  
pp. 136236132199562
Author(s):  
Goldie A McQuaid ◽  
Kevin A Pelphrey ◽  
Susan Y Bookheimer ◽  
Mirella Dapretto ◽  
Sara J Webb ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Intellectual Disability ◽  
Daily Living ◽  
Adaptive Functioning ◽  
Autism Spectrum ◽  
Intellectual Ability ◽  
Adaptive Skills ◽  
Typically Developing ◽  
Same Sex ◽  
Socialization Skills

Adaptive functioning, or the suite of skills essential for real-world, day-to-day functioning, includes daily living, communication, and socialization abilities. Even in the absence of co-occurring intellectual disability (IQ < 70), difficulties in adaptive functioning are prominent in autism spectrum disorder (ASD). Further, ASD individuals without co-occurring intellectual disability (ID) demonstrate a gap between IQ and adaptive functioning, which widens with age. Existing studies of IQ-adaptive functioning discrepancies have characterized predominantly male ASD samples; thus, whether the gap is demonstrated in ASD females is unknown. To probe sex- versus diagnosis-specific differences in adaptive functioning in ASD, we characterized adaptive functioning using the Vineland Adaptive Behavior Scales, Second Edition in 177 non-ID (IQ > 70) ASD (females = 75, males = 102), and 178 typically developing (TD) (females = 87, males = 91) youth, aged 8–17 years. We examined whether each group evidenced a gap between full-scale IQ and adaptive skills and its associations with age. ASD youth evinced significantly lower adaptive skills and a significantly greater IQ-adaptive functioning gap than their same-sex TD peers. In this cross-sectional sample, the increase in the IQ-adaptive functioning gap with age was of similar magnitude for ASD males and females, but only reached statistical significance in males. We discuss unique implications the profound IQ-socialization skills gap in particular may have for ASD females. Lay abstract Adaptive functioning refers to skills that are vital to success in day-to-day life, including daily living (e.g. grocery shopping, food preparation, transportation use), communication (e.g. verbal expression of needs), and socialization skills (e.g. interpersonal skills, including expressing and recognizing emotions, and understanding turn-taking in conversation). Among autistic individuals without intellectual disability, adaptive functioning is not commensurate with intellectual ability (IQ), and instead a gap exists between these individuals’ intellectual ability and their adaptive skills. Further, these autistic individuals show a widening of this gap with increasing age. Existing studies of the gap between IQ and adaptive functioning have studied predominantly male samples. Thus, we do not know if the gap also exists in autistic females. We therefore looked at adaptive functioning and the gap between IQ and adaptive functioning in a large sample of autistic girls and boys without intellectual disability. To disentangle effects of group (autistic vs typically developing) from effects of sex (girls vs boys), we compared autistic girls and boys to one another as well as to their same-sex typically developing peers. Analyses took into consideration differences in IQ between autistic and typically developing youth. We found autistic girls, like autistic boys, show lower adaptive functioning than their same-sex typically developing peers. Results underscore the need to evaluate adaptive functioning in autistic individuals without intellectual disability and to provide necessary supports. The large gap between intellectual ability and socialization skills, in particular, may be of critical importance in improving our understanding of outcomes and mental health difficulties among autistic females.

scholarly journals THE DEVELOPMENT OF INDEPENDENT LIVING SKILLS IN YOUNG ADULTS WITH INTELLECTUAL DISABILITY IN SHELTERED HOUSING ACCOMMODATION

2017 ◽  
Vol 3 ◽  
pp. 265
Author(s):  
Rita Raudeliunaite ◽  
Vida Gudžinskienė
Keyword(s):  
Young Adults ◽  
Intellectual Disability ◽  
Social Workers ◽  
Home Environment ◽  
Independent Living ◽  
People With Disabilities ◽  
Sheltered Housing ◽  
Independent Living Skills ◽  
The Social ◽  
Living Skills

National Programme for Social Integration of People with Disabilities for 2013 - 2019 has set a strategic objective to create a positive environment and conditions for a dignified and fully fledged life of people with disabilities in Lithuania, to guarantee equal opportunities and the quality of life of people with disabilities. The article analyses the experiences of the social workers, who work in sheltered housing accommodation with young adults with intellectual disability, when developing independent living skills in young adults with intellectual disability. Sheltered housing accommodation is social services institutions providing social care, in which persons live in home environment and conditions are created for them to manage their own personal life on their own with the support of the social workers. A qualitative-empirical study has been conducted by using the method of a semi-structured interview. The study data were processed by using the method of content analysis. The results of the empirical study are based on the experience of 11 social workers, who have been working in sheltered housing accommodation with young adults with intellectual disability for at least 3 years. The study has revealed that the following independent living skills are considered to be the most easy to be developed: cooking, simple housework, hygiene skills. The young adults also easily develop public transport use skills. The young adults most often acquire work skills by tidying their home environment. The most difficult, according to the social workers, to develop are economic skills: to manage their budget, to allocate finances, to pay for services, and to do the shopping.  The young adults with intellectual disability find it difficult to develop their parenting skills.  Communication skills are developed while learning etiquette and complying with it in a large range of environments, by encouraging to  communicate courteously with other persons, showing personal example, taking a good example from others, taking part in different events, festivals and communal activity.  The development of independent living skills occurs by engaging young adults in a practical activity. Particular attention is given to the development of healthy lifestyle skills. The young adults are encouraged to make decisions by guiding them in the right direction, while respecting their interests; the responsibility for the decisions made by them and the consequences of those decisions is also developed. Activity planning, organising and personal skills are developed.

scholarly journals Community Living, Intellectual Disability and Extensive Support Needs: A Rights-Based Approach to Assessment and Intervention

2021 ◽  
Vol 18 (6) ◽  
pp. 3175
Author(s):  
Laura Esteban ◽  
Patricia Navas ◽  
Miguel Ángel Verdugo ◽  
Víctor B. Arias
Keyword(s):  
Intellectual Disability ◽  
Independent Living ◽  
Structural Equation ◽  
Equation Modeling ◽  
Community Living ◽  
Support Needs ◽  
Related Services ◽  
The Right To Privacy ◽  
The Right

People with intellectual disability (ID) and extensive support needs experience poorer quality of life than their peers whose disability is not as severe. Many of them live in residential settings that limit community participation and prevent them from exercising control over their lives. This work analyzes the extent to which professional practices are aimed at promoting the right to community living for people with ID and extensive support needs, as well as the rights that are particularly linked to it, such as the right to habilitation and rehabilitation and the right to privacy. A specific questionnaire was designed and administered to 729 adults with intellectual disability (M = 37.05; DT = 12.79) living in different settings (family home, residential facilities and group homes). Measurement and structural models were estimated using exploratory structural equation modeling. Results obtained reveal that people with extensive support needs receive less support in terms of guaranteeing their right to independent living and privacy, especially when they live in disability-related services. This study highlights the need to implement and monitor, using valid and reliable indicators, mesosystem strategies that guarantee the right to live and participate in the community, especially for individuals with ID and extensive support needs.

scholarly journals Transitioning Ambulatory Medicine from Pediatrics to Adult Care for Patients with Epilepsy and Intellectual Disability

2020 ◽  
Vol 09 (04) ◽  
pp. 172-176
Author(s):  
Derryl Miller ◽  
Marcia Felker ◽  
Mary Ciccarelli
Keyword(s):  
Young Adults ◽  
Intellectual Disability ◽  
Service Providers ◽  
Healthcare Services ◽  
Medical Decision ◽  
Small Subset ◽  
Adult Care ◽  
Consensus Statements ◽  
Youth And Young Adults ◽  
Ambulatory Medicine

AbstractConsensus statements and clinical reports exist to guide the transition of youth from pediatric to adult healthcare services. Across the range of youth with no chronic health conditions to those with the most complex disabilities, the standards of practice continue to vary broadly across the country and internationally. Youth and young adults with combined conditions of epilepsy with intellectual disability are a small subset of the total population of young adults who share common needs. These include a system of supports that supplement each person's limitations in autonomy and self-management. Caregivers play significant roles in their lives, whether they are family members or paid direct service providers. Medical decision making and treatment adherence require specific adaptations for patients whose independence due to disability is unlikely. Key issues related to tuberous sclerosis complex, neurofibromatosis, and Rett and Sturge–Weber syndromes will be highlighted.

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