Quality of life: A case-controlled long-term follow-up study, comparing young high-functioning adults with autism spectrum disorders with adults with other psychiatric disorders diagnosed in childhood

doi:10.1016/j.comppsych.2013.08.001

Comprehensive Psychiatry

Volume 55, Issue 2, February 2014, Pages 302-310

https://doi.org/10.1016/j.comppsych.2013.08.001 Get rights and content

Abstract

Background

Long term outcome in childhood autism spectrum disorders (ASD) was evaluated by studying quality of life (QoL) in young adulthood in comparison to the outcome of other child psychiatric disorders.

Methods

In this follow-up study, objective and subjective QoL of 169 high-functioning (IQ > 70) adults with ASD (19 to 30 years) was contrasted with QoL data of age matched adults diagnosed with attention deficit/hyperactivity disorder (N = 85), disruptive behaviour disorders (N = 83), and affective disorders (N = 85) during childhood. The mean follow-up period of the ASD patients was 13.9 years. Objective QoL included marital status, living arrangements, level of education, employment, and usage of mental health care. Subjective QoL included satisfaction concerning living arrangements, work or education, physical condition, partner relationship, social relationships, state of mind, and future perspective.

Results

QoL was more compromised in adults diagnosed with ASD in childhood than in adults with other psychiatric disorders in childhood. A relatively large proportion of the adults with ASD were single, few lived with a partner or a family and many of them were institutionalized. Adults with ASD had lower educational levels, relatively few had paid employment and many were social security recipients, as compared to the other psychiatric patients. In case the adults with ASD used medication, 47% used anti-psychotics. Regarding the subjective QoL, the adults with ASD were less satisfied about their work or education, partner relationship, and future perspective than the other groups. Even when highly educated adults with ASD were compared to highly educated adults diagnosed with other childhood disorders, the QoL appeared to be more disadvantageous in adults with ASD.

Conclusion

Many studies have shown that QoL is threatened in psychiatric patients, but findings of this study indicate that young high-functioning adults diagnosed with ASD in childhood are at relatively high risk for poor QoL compared to other childhood psychiatric disorders.

Section snippets

Procedure and participants

This study is part of a longitudinal study, designed to monitor the cognitive and social–emotional development of patients, referred during 1984 to 2004, to the Department of Child and Adolescent Psychiatry at the University Medical Centre Utrecht, the Netherlands. The study was approved by the medical ethics committee (number 05-319/K) and written informed consent was obtained according to the declaration of Helsinki. Patients who were diagnosed with ASD, ADHD, DISR, or AFF and reached the

Objective QoL

The questionnaire developed for this study to administer objective life conditions, consisted of questions about the patients' marital status, living arrangements, highest educational qualification, employment, mental health care, and medication usage. The questionnaire covers customary domains of QoL [e.g., 13]. The level of education of the patients was reported on the basis of the SOI-2006 (Standaard Onderwijs Indeling [Standard Classification of Education]; see Central Bureau for

Marital status

The majority (88%) of the adults with ASD was single, 4% of the adults had a relationship, and 8% were married or cohabiting. This distribution was significantly different in the comparison groups (χ²(6) = 39.552, p < .001) with singles being over-represented (z = 5.8) in the ASD group, and under-represented in the DISR (z = −3.6) and AFF groups (z = −3.2). Conversely, adults who were married or cohabiting were under-represented (z = −5.2) in the ASD group, but over-represented in the DISR group (z = 3.2)

Discussion

This follow-up study examined the specific impact of childhood ASD on QoL during young adulthood as compared to young adults who suffered from the other most prevalent psychiatric disorders in childhood; ADHD, DISR, and AFF disorders. Results showed that QoL of high-functioning adults diagnosed with ASD in childhood was more compromised than QoL of adults with other child psychiatric diagnoses. This applies for both objective and subjective QoL. In contrast with the outcome in adults with ADHD,

References (30)

C. Gillberg
Outcome in autism and autistic-like conditions
J Am Acad Child Adolesc Psychiatry
(1991)
D. Bastiaansen et al.
Quality of life in children with psychiatric disorders: self, parent, and clinician report
J Am Acad Child Adolesc Psychiatry
(2004)
M.G. Sawyer et al.
Health-related quality of life of children and adolescents with mental disorders
J Acad Child Adolesc Psychiatry
(2002)
P.M. Wehmeier et al.
Social and emotional impairment in children and adolescents with ADHD and the impact on quality of life
J Adolesc Health
(2010)
G.I. Papakostas et al.
Quality of life assessments in major depressive disorder: a review of the literature
Gen Hosp Psychiatry
(2004)
G.E. Simon
Social and economic burden of mood disorders
Biol Psychiatry
(2003)
American Psychiatric Association
Diagnostic and statistical manual of mental disorders, 4th edition, text revision (DSM-IV-TR)
(2000)
M.H. Beauchamp et al.
SOCIAL: an integrative framework for the development of social skills
Psychol Bull
(2010)
P. Howlin
Outcome in adult life for more able individuals with autism or Asperger syndrome
Autism
(2000)
M.M. Seltzer et al.
Trajectory of development in adolescents and adults with autism
Ment Retard Dev Disabil Res Rev
(2004)

M. Sigman et al.

Autism from developmental and neuropsychological perspectives

Annu Rev Clin Psychol

(2006)

M. Stokes et al.

Stalking, and social and romantic functioning among adolescents and adults with autism spectrum disorder

J Autism Dev Disord

(2007)

M. Cederlund et al.

Asperger syndrome and autism: a comparative longitudinal follow-up study more than 5 years after original diagnosis

J Autism Dev Disord

(2008)

P. Howlin

Outcome in high-functioning adults with autism with and without early language delays: implications for the differentiation between autism and Asperger syndrome

J Autism Dev Disord

(2003)

L.C. Lee et al.

Children with autism: quality of life and parental concerns

J Autism Dev Disord

(2008)

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Quality of life: A case-controlled long-term follow-up study, comparing young high-functioning adults with autism spectrum disorders with adults with other psychiatric disorders diagnosed in childhood

Abstract

Background

Methods

Results

Conclusion

Section snippets

Procedure and participants

Objective QoL

Marital status

Discussion

J Am Acad Child Adolesc Psychiatry

J Am Acad Child Adolesc Psychiatry

J Acad Child Adolesc Psychiatry

J Adolesc Health

Gen Hosp Psychiatry

Biol Psychiatry

Diagnostic and statistical manual of mental disorders, 4th edition, text revision (DSM-IV-TR)

SOCIAL: an integrative framework for the development of social skills

Psychol Bull

Outcome in adult life for more able individuals with autism or Asperger syndrome

Autism

Trajectory of development in adolescents and adults with autism

Ment Retard Dev Disabil Res Rev

Autism from developmental and neuropsychological perspectives

Annu Rev Clin Psychol

Stalking, and social and romantic functioning among adolescents and adults with autism spectrum disorder

J Autism Dev Disord

Asperger syndrome and autism: a comparative longitudinal follow-up study more than 5 years after original diagnosis

J Autism Dev Disord

Outcome in high-functioning adults with autism with and without early language delays: implications for the differentiation between autism and Asperger syndrome

J Autism Dev Disord

Children with autism: quality of life and parental concerns

J Autism Dev Disord