High Functioning Autism Spectrum Disorders in Adults: Consequences for Primary Caregivers Compared to Schizophrenia and Depression

Inge A. C. Grootscholten,Bob van Wijngaarden,Cornelis C. Kan

doi:10.1007/s10803-017-3445-1

Abstract

Primary caregivers experience consequences from being in close contact to a person with autism spectrum disorder (ASD). This study used the Involvement Evaluation Questionnaire to explore the level of consequences of 104 caregivers involved with adults with High Functioning ASD (HF-ASD) and compared these with the consequences reported by caregivers of patients suffering from depression and schizophrenia. Caregivers involved with adults with an HF-ASD experience overall consequences comparable to those involved with patients with depression or schizophrenia. Worrying was the most reported consequence. More tension was experienced by the caregivers of ASD patients, especially by spouses. More care and attention for spouses of adults with an HF-ASD appears to be needed.

Highlights

It has been recognized since the 1950s that a psychiatric disorder can have a major impact on the significant others (SO: parents, spouses, siblings, friends) of the patient (e.g. Schene 1990; Baronet 1999; Cuijpers and Stam 2000; Wittmund et al 2002; Ostman et al 2005; Gelkopf and Roe 2014)
What is known about the impact of autism spectrum disorder (ASD) on their SOs? Literature published on the impact of ASD on primary caregivers mainly focuses on the consequences for parents with an autistic child that often has a concomitant intellectual disability as well as a language disorder (e.g. Milgram and Atzil 1988; Hartley et al 2011; Hayes and Watson 2013; Burke and Heller 2016; Tomeny 2016)
The schizophrenia sample originated from the European EPSILON study (Becker et al 2000), which identified a representative cohort of patients with schizophrenia

Summary

Introduction

It has been recognized since the 1950s that a psychiatric disorder can have a major impact on the significant others (SO: parents, spouses, siblings, friends) of the patient (e.g. Schene 1990; Baronet 1999; Cuijpers and Stam 2000; Wittmund et al 2002; Ostman et al 2005; Gelkopf and Roe 2014). These parents experience a profound number of consequences such as high levels of parenting stress (Lecavalier et al 2006; Milgram and Atzil 1988) or feelings of guilt and failure (van Tongerloo et al 2015) These levels of consequences are high compared to parents of children with a normal development, and high compared to parents with a child with another disability such as Down syndrome, cerebral palsy, fragile X or Fetal Alcohol Spectrum Disorder (Hayes and Watson 2013). As a result of these chronic high levels of parenting stress these parents report an increase of mental health problems such as the risk of developing a depressive disorder (e.g. Tomeny 2016; Lin 2011; Lecavalier et al. Vol:.(1234567890)

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