Young adults with severe intellectual disability: Culture, parent, and sibling impact

2016 ◽  
Vol 42 (3) ◽  
pp. 230-239
Author(s):  
Stacy Lauderdale-Littin ◽  
Jan Blacher
Keyword(s):  
Young Adults ◽  
Intellectual Disability ◽  
Disability Culture ◽  
Severe Intellectual Disability

Transition Satisfaction and Family Well Being Among Parents of Young Adults With Severe Intellectual Disability

2009 ◽  
Vol 47 (1) ◽  
pp. 31-43 ◽  
Author(s):  
Cameron L. Neece ◽  
Bonnie R. Kraemer ◽  
Jan Blacher
Keyword(s):  
Young Adults ◽  
Intellectual Disability ◽  
Family System ◽  
Transition Period ◽  
Life Stage ◽  
Sudden Change ◽  
Well Being ◽  
Future Research ◽  
Environmental Characteristics ◽  
Severe Intellectual Disability

Abstract The transition from high school to adulthood is a critical life stage that entails many changes, especially for youth with severe intellectual disability. The transition period may be especially stressful for the families of these young adults, who often experience a sudden change, or decrease, in services. However, little research has examined what constitutes a successful transition for the families of these individuals. The present study examined parent perspectives of transition for 128 young adults with severe intellectual disability, specifically, parent satisfaction with transition. Results suggested that transition satisfaction is related to young adult, family, and environmental characteristics, with environmental characteristics being the strongest predictors of transition satisfaction. Furthermore, transition satisfaction is related to multiple measures of family well being, indicating the tremendous need for considering the broader family system when planning for a young adult's transition. Implications and directions for future research are discussed.

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.

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.

Diagnostic Exome Sequencing in Persons With Severe Intellectual Disability

2013 ◽  
Vol 68 (3) ◽  
pp. 191-193 ◽  
Author(s):  
Joep de Ligt ◽  
Marjolein H. Willemsen ◽  
Bregje W. M. van Bon ◽  
Tjitske Kleefstra ◽  
Helger G. Yntema ◽  
...  
Keyword(s):  
Intellectual Disability ◽  
Exome Sequencing ◽  
Severe Intellectual Disability
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