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Health-Related Quality of Life in Parents of Children with Asperger Syndrome and High-Functioning Autism

  • H. Allik
  • J.-O. Larsson
  • H. Smedje
Reference work entry

Abstract:

 Asperger syndrome (AS) and  high-functioning autism (HFA) are chronic neuropsychiatric disorders which start during childhood. The conditions which are associated with a pervasive impairment in social functioning impose a significant burden on the parents of affected children. The present chapter provides an overview of studies which have investigated and explored aspects of  quality of life (QOL) and  health-related quality of life (HRQL) in parents of children with AS or HFA.

Children with AS or HFA are of normal or above normal intelligence, but they have deficient ability for social interaction, rigid and stereotyped ritualistic behaviors, and, in the case of HFA, also communication deficits. Moreover, AS and HFA are often associated with co-existing psychiatric disorders and risk for peer victimization; problems which may further compromise affected individuals’ psychological functioning and well-being and increase their need for care and support. Both AS and HFA belong to the Pervasive Developmental Disorders (PDD), alternatively denominated Autism Spectrum Disorders (ASD). Recent epidemiological studies suggest that the prevalence of PDD has risen significantly over the course of the past 20–30 years. Current estimates indicate that up to 6 per 1,000 children have a PDD, and that at least half of these individuals are of normal intelligence, as in AS and HFA.

Clinical experience, increasingly supported by research data, indicates that the raising of a child with AS/HFA is frequently associated with high levels of stress and burden, and with impairments in parental HRQL. Thus, an important issue for health care systems is to take into account parents’ health and well-being in the planning of clinical services for persons with AS and HFA. The main aim of the present chapter is to provide the reader with an overview of studies which have explored aspects of QOL and HRQL in parents of children with AS or HFA.

Keywords

Autism Spectrum Disorder Autism Spectrum Disorder Attention Deficit Hyperactivity Disorder Cerebral Palsy Parental Stress 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

List of Abbreviations:

ADHD

 Attention Deficit Hyperactivity Disorder

AS

Asperger Syndrome

ASD

Autism Spectrum Disorder

CAIA

Child and Adolescent Impact Assessment

CES-D

Center for Epidemiological Studies-Depression Scale

CHIP

Coping Health Inventory for Parents

COPE

Coping Orientations to Problems Experienced

CP

Cerebral Palsy

DSM-IV

Diagnostic and Statistical Manual of Mental Disorders 4th edition

HFA

High-Functioning Autism

HRQL

Health-Related Quality of Life

ICD-10

International Classification of Diseases 10th edition

IQ

Intelligence Quotient

MR

Mental Retardation

NLD

 Nonverbal Learning Disability

PDD

Pervasive Developmental Disorder

PDD-NOS

Pervasive Developmental Disorder Not Otherwise Specified

POMS

Profile of Mood States

PRE-FI

Preview-Review Family Interview

QOL

Quality of Life

QRS-F

The Questionnaire on Resources and Stress – Short Form

VABS

Vineland Adaptive Behavior Scales

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Copyright information

© Springer Science+Business Media LLC 2010

Authors and Affiliations

  • H. Allik
  • J.-O. Larsson
  • H. Smedje

There are no affiliations available

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