How do Parents Respond to Stigma and Hurtful Words Said to or about their Child on the Autism Spectrum?

Review Article

Austin J Autism & Relat Disabil. 2016; 2(4): 1030.

How do Parents Respond to Stigma and Hurtful Words Said to or about their Child on the Autism Spectrum?

Aalami Harandi A¹ and Fischbach RL²*

¹Department of Biomedical Engineering, School of Engineering and Applied Sciences, Columbia University, USA

²Center for Bioethics, College of Physicians and Surgeons, Columbia University, USA

*Corresponding author:Fischbach RL, Center for Bioethics, Columbia University College of Physicians and Surgeons, 630 West 168th Street, Box 161, New York, NY 10032, USA

Received: August 02, 2016; Accepted: September 08, 2016; Published: September 09, 2016

Abstract

No published empirical studies could be found that investigate how parents of a child with Autism Spectrum Disorder (ASD) respond to the stigma and hurtful comments said to or about their child. Filling this gap, we documented parent’s reported frequencies of their child’s ASD-associated behaviors, specific hurtful words these behaviors elicited from others, and the strategies parents used to manage the consequent stigma. Participants were parents (N=502) included in the Simons Simplex Collection (SSC) who have been well described in the Simons Foundation Autism Research Initiative (SFARI). Coming from 35 states and 3 Canadian provinces, 95% were mothers between 28-65 years, predominantly white, highly educated, and living with a spouse or partner. Of the probands, 86% were boys between 5 to 18 years with relatively high non-verbal IQs of 85. Parents responded to a 72-item telephone survey. Data revealed 95% of parents think individuals with autism are stigmatized, 98% reported difficulty raising a child with autism, and 95% reported stigma associated with autism had been difficult for the child and family to deal with. Parents reported hearing 82 hurtful words said to or about their child. Parents responded differently to hurtful words with 52% proactively educating offenders while 24% passively ignored or avoided anticipated hurtful situations. Active-responding parents reported less social isolation and difficulty raising a child with ASD than passive-responding parents.

Conclusion: Educating the public about behaviors associated with ASD should decrease stigma and increase understanding, tolerance, and acceptance of those on the autism spectrum and their families.

Keywords: Autism, Autism Spectrum Disorder, Stigma, Parents, Bullying, Children, Stereotype

Abbreviations

ASD: Autism Spectrum Disorder; SFARI: Simons Foundation Autism Research Initiative; SSC: Simons Simplex Collection; IAN: Interactive Autism Network; CSR: Center for Survey Research; CATI: Computer-Assisted Telephone Interview; UMASS Boston: University of Massachusetts Boston; ARP: Active Responding Parents; PRP: Passive Responding Parents

Introduction

Stigma is commonly associated with Autism Spectrum Disorder (ASD). Previous studies have specifically documented that parents of children with ASD think that individuals with ASD are stigmatized [1,3,14]. Interviewed parents have revealed that “enacted stigmas” are driven by the misconception that these families are “bad parents with naughty children” in public settings when the child on the spectrum exhibits atypical behavior. While recent studies have investigated how parents cope with the diagnosis and behaviors associated with ASD [4,5], there are no published empirical studies that investigated how parents of a child with ASD respond to hurtful comments they hear said to or about their child and the subsequent stigma they perceived. In an effort to fill this gap, our study sought to investigate the frequency of their child’s ASD-associated behaviors, the specific hurtful words and phrases these behaviors elicited from others, and the strategies parents then used to deal with the stigma these insults provoked.

Stigma associated with ASD

This study follows Link and Phelan’s model of the stigma process in which stigma acts as the link between an attribute and a stereotype that may promote discrimination [6,7]. The Link and Phelan model involves five components beginning with the identification and labelling of a “human difference” that leads to the presence of a stereotype in which the labelled attribute is seen as undesirable [7]. This is followed by the separation of the stigmatized group from the stigmatizing group, then discrimination due to this separation, and finally the enacted differences in “power” or social status [7].

Gray [11,8] has attributed stigma associated with children with ASD to deviations from socially typical behaviors with no superficial indication of a disorder. Individuals with ASD present a variety of the classical behaviors of autism in which they deviate from social norms in communication and social interaction, and display ritualistic or repetitive behaviors [9]. The extent to which mothers of children with ASD feel stigmatized seems to be linked to the severity of their child’s autistic behaviors [1].

Caregivers of children with ASD

In addition to the psychological impacts of coping with a child with ASD, caregivers deal with financial burdens and employment difficulties. Saunders and colleagues [10] reported that about a third of parents of children with ASD report financial strain and another third of parents reported having to stop working in order to care for their child. To give a quantitative estimate of the financial burden, Buescher and colleagues [11] used archival data in the US, estimating more than $50,000 as the annual cost of care for a child with ASD and no other disabilities.

Caregivers of children with neurodevelopmental disorders also report greater psychological and psychosocial distress than caregivers of neurotypical children [12,13]. According to Higgins and colleagues, two-fifths of caregivers of children with ASD reported “some form of physical, emotional, financial or marital relationship stress”, with a quarter reporting negative effects on family life. Although the physical, social, and financial burden of caring for a child with a disability may cause much of the psychological distress felt by caregivers, these difficulties may be exacerbated by stigma.

Stigma as perceived by caregivers presents a unique opportunity for study from a novel perspective. Link and Phelan [6] stated that one major challenge to studying stigma is the lack of perspective since most scientists do not belong to the stigmatized group. As neurotypical caregivers of children on the spectrum, the parents who participated in our study could act as the bridge between the stigmatized group and creation of a better understanding of stigma enacted against children with ASD. In particular, we were interested in exploring the strategies these parents used to respond to perceived and enacted stigma that the Link and Phelan model describes.

Our study sought to explore stigma associated with ASD through the reports of the child’s parents. Specifically, we were interested in documenting hurtful words that parents of children with ASD heard in public situations. Another major aim of this study was to investigate whether the themes of parent’s response strategies emerge as they grappled with hurtful statements and stigma. Finally, we analyzed parent’s responses to isolate the strategy that appeared more advantageous to parents when responding to people making hurtful statements. The significant conclusion from this study is that the educational efforts of parents, who used proactive strategies to educate the public about autism spectrum disorders, are likely to decrease stigma and increase understanding, tolerance, and acceptance of those on the spectrum and their parents.

Methods

Participants

The study sample and surveying procedures have been described previously [3,14,15].

Sample identification and selection

Participants in the study were parents included in the Simons Simplex Collection (SSC) who were participants in the Simons Foundation Autism Research Initiative (SFARI). The Interactive Autism Network (IAN) was hired to manage participant’s data in “[email protected]”. [email protected] is an international sample of 1,460 families who consented to have their genotypic and phenotypic information used by researchers.

Comprehensively evaluated, the SSC families include one child, the proband, who has an ASD, and one or more neurotypical siblings and unaffected biological parents [15]. Five hundred fifty-four parents who were the primary caregiver of the proband were randomly selected from this “[email protected]” population to participate in the study. Of those, 502 completed the interview as 41 were unreachable after several attempts, 2 were ineligible, and 9 refused to participate. This resulted in a response rate of 91% [3,14].

Participating parents came from all 12 SFARI research sites located in 35 states and 3 Canadian provinces. Of the parents, 95% were mothers who ranged in age from 28-65 (median = 43.7 years old, SD = 5.36), were predominantly white (82%), highly educated (71% had at least a college degree), and were living with a spouse or partner (92%). Of the probands, 86% were boys between 5 and 18 years old (median = 11), and they had relatively high non-verbal IQ of 85.

Survey design and implementation: Columbia University investigators, in collaboration with survey design experts from the Center for Survey Research (CSR) located at the University of Massachusetts (UMASS Boston), designed the 72-item survey based on a review of the literature and a series of three parent focus groups and three focus groups with young adults who were on the autism spectrum. Cognitive interviews and pretesting led to the development of a Computer-Assisted Telephone Interview (CATI) to survey the participants. The survey instrument was designed to capture how parents responded to hurtful situations that occurred in the last 6 months.

The study was approved by the Institutional Review Boards at both Columbia and UMass Boston. Informed Consent was obtained from all participants who were provided $25 as compensation.

Results

Data analysis

The primary goal of this study was to obtain data from a sample of parents who reported hearing hurtful words said to or about their child and the subsequent strategies they used to deal with the stigma generated by those hurtful words. Descriptive analysis included frequencies of reported autistic behaviors of the child, hurtful words said to or about the child, and response strategies used by parents. Two researchers independently coded parent’s responses to hurtful words they heard. Inter-rater reliability was assessed and found to be concordant (κ = .96). Inferential statistics were computed using chisquare tests of independence.

Children’s autistic behaviors

Descriptive analyses revealed that 8% of the sampled children were nonverbal and 29% had physical characteristics that parents reported might draw attention from others. Table 1 presents frequencies in the last six months of autistic behaviors of the children as reported by their parents (Table 1).