1Pediatric Psychiatry Specialist, Titan “Dr. C-tin Gorgos”, Psychiatric Hospital, Bucharest, Romania
Autism spectrum disorders (ASD) are a group of diseases with varying degrees of severity, involving language deviations, sometimes delayed in its development, associated with difficulties in communication and social relationships and behavioral bizarreness such as restricted, repetitive behaviors. Three areas of development are affected, namely socialization, language, and cognition. Through this literature review, I aim to answer the question “Do parents of children with autism spectrum disorder (ASD) perceive themselves as stigmatized by society?” I will also do an analysis of the change in perception of autism over time, a perception that can change the degree of stigma. Starting from the definition of stigma in sociology, proposed by Zamfir in 1993, a term approached as a means of differentiating social power by Durkheim in 1895, I will make a narrative literature review, using studies published from 1993 till present.
Keywords: stigma, autism, perception, family
Autism spectrum disorders (ASD) are a group of diseases with varying degrees of severity, involving language deviations, sometimes delayed in its development, associated with difficulties in communication and social relationships and behavioral bizarreness such as restricted, repetitive behaviors. Three areas of development are affected, namely socialization, language, and cognition. Symptoms are visible from early childhood, early intervention being vital for improving adaptation and social integration .
Children diagnosed with autism are different in their reduced communication and social interaction skills, in their low ability to intuit and understand social contexts (resulting from a deficit in the theory of mind – that is, the ability to adapt their behavior to the behaviors of others), through displayed behaviors that sometimes seem bizarre, repetitive, through the use of a particular language and prosody, sometimes accompanied by self and hetero-aggressiveness.
These ways of adapting to social relations predispose them, without adequate information on the diagnosis in society, to rejection and social judgment. Judgment is used as a method of defense against the unknown and the unpredictable.
Through this literature review, I aim to answer the question “Do parents of children with autism spectrum disorder (ASD) perceive themselves as stigmatized by society?” I will also do an analysis of the change in perception of autism over time, a perception that can change the degree of stigma. Starting from the definition of stigma in sociology, proposed by Zamfir in 1993 , a term approached as a means of differentiating social power by Durkheim in 1895, I will make a narrative literature review, using studies published from 1993 till present.
Materials and methods
In the present study I systematized and described from the literature the concept of stigma and its evolution on the families of children diagnosed with ASD, especially on parents.
Data selection: The aim of this review was to synthesize the literature on the change in perception of autism over time, a perception that can change the degree of stigma. I screened the literature for the perception of the parents regarding the stigma they perceived from the community above, after their child was diagnosed with ASD.
Data sources: I made an accurate search in the main sources of Databases (PubMed, Google Scholar) with the keywords: “stigma”, “autism”, “perception”, “family”.
Electronic databases were searched systematically for studies using the terms and categories: “child autistic symptoms”, “parents of children with ASD”, “internalization of stigma ASD“, “affiliate stigma ASD”, “parenting stress ASD”, “self stigma parents of children with ASD”, “de-stigmatization ASD”, “perception of stigma autism”, “social acceptance ASD”. Over 172000 studies were identified of which 12 were included in the present study (Table I).”
Table I Databases and results
|Terms and categories||Google Scholar||PubMed||Results|
|Child autistic symptoms||56 400||438||56 838|
|Parents of children with ASD||47 300||179||47 479|
|Internalization of stigma ASD||2 620||0||2 620|
|Affiliate stigma ASD||543||0||543|
|Parenting stress ASD||15 500||39||15 539|
|Self stigma parents of children with ASD||16 400||2||16 402|
|Perception of stigma autism||16 500||0||16 500|
|Social acceptance ASD||16 100||7||16 107|
|Total number studies||171 589||665||172 254|
Several forms of stigma
The term stigma, introduced in sociology by E. Goffman refers to any attribute, characteristic, physical or social sign that discredits the identity of an individual, to the point that it is no longer fully accepted by society . Goffman argued that social actors are constantly adapting their impressions to the stage they are on. Stigma can also be approached as a means of differentiating social power, Durkheim being the first sociologist who in 1895 considered stigma a social phenomenon. Stigmatization, considered a socio-cultural process, operates by reproducing the power structure of relationships and excludes stigmatized individuals from the social world. Stigma / stigmatization works at the interaction between culture / power / difference and should be analyzed in the negotiation of powers in social life relations .
According to Oren Shtayermann, stigmatized people are those who possess a quality that others consider negative, unfavorable or in some way unacceptable. He believes that it is in the human nature to judge what is different . Starting from the idea that what is different does not fit into the norms and social values, autism can be considered a stigma for people diagnosed and their families.
Goffman in 1960 introduced the concept of stigma and courtesy stigma – stigma by affiliation with stigmatized. There are two categories of stigma, the perceived (personal perception of the stigma) and the adopted by the behaviors highlighted by others who discriminate. This explains the fact that in some situations the stigmatized cannot perceive themselves as stigmatized. Basically, the social identity of the individual is tainted by association with a stigmatized person .
Gray in 2002 showed the difference between felt and adopted stigma, showing that mothers of children with ASD are more exposed to both types, given that they are considered the primary caregiver, experiencing social rejection and negative judgment .
Public stigma is defined as the social and psychological reaction for someone perceived with a stigmatizing condition, this can be a diagnosis and differ depending on the information made public in the media and the severity of the condition. Self – stigmatization is the result of the psychological and social impact of having the stigma, in other words the internalization of the stigma .
Stigma of the ASD people and their families
People with autism and their families are judged by others based on preconceived negative behaviors and stereotypes about normalcy and abnormality. Caregivers, families, and those living with children with ASD have reported difficulties in establishing relationships with those who have no knowledge of this condition. This lack of knowledge implies a misinterpretation of the different behaviors that these children manifest. Social exclusion and judgment felt were generally reported. Parents also feel stigmatized by questioning their ability to be parents, which leads to increased social isolation and a decreased quality of life. For these reasons, there is a fear of telling the child’s diagnosis for fear that it will be misunderstood and rejected .
The target of stigma through affiliation can be in addition to parents and extended family who care for the child with autism and informal caregivers, the people who provide support to the family without any financial benefit. This type of stigma involves blaming the family for the onset of autism, which should make them feel ashamed because they do not have the necessary skills for care. From this perspective, the family is socially rejected .
The normal physical appearance of the child, without the existence of a physical stigma, increases the stigma, as society’s expectations are in line with the usual social norms and values. Stigma and impact are greater, as there is no physical disability and then the behavior is shocking. Mothers reported a higher degree of stigmatization, possible causes being taking on more responsibilities (going out more often in public, with greater exposure), not infrequently the child’s behavior is considered a lack of education and pampering. The severity of the child’s involvement seems to be directly proportional to the stigma and inversely proportional to the child’s age .
It is therefore important how parents perceive and internalize the child’s diagnosis. Mothers perceive themselves more stigmatized, lonely, stressed, misunderstood, perceived as the bad parent. In a continuous struggle, they are challenged, feeling exhaustion, exaltation, as “in a solitary continuous journey in a roller-coaster” .
(1) Broady et all, 2017 conducted a qualitative study on the internalized stigma of parents of children diagnosed with highly functional autism. The stigma experienced can be explained by insufficient knowledge of the diagnosis, interpersonal exclusion, stereotypical comments, and inadequate social support. The biomedical model of autism claims that this is a neurodevelopmental disorder with discovered neurological and genetic origins. On the other hand, social theorists have argued that ASD is on the one hand a social construct, because society at this time considers autism abnormal, requiring a redefinition of norms and values. Timini argued that autism, seen as a social model, does not describe a coherent biological construct and is not a common, stable conceptualization. However, from a clinical perspective, ASD is a real disability and not a disease built by society .
(2)The impact of this diagnosis on family relationships is large. In a society where stigma is attached to children with autism, parents must wage war. A study in Bangladesh showed that autism was considered an epidemic. Here, autism is still viewed with a general negative attitude, as a social barrier and is a punishment given by God to the family or they are viewed as being possessed by the Devil. And it is still believed that inadequate parental care can be the cause, which increases the level of stress and stigma among parents. Fear of discrimination and stigma leads many parents to avoid finding a diagnosis so as not to receive a disability identity .
(3)Another study of Somali parents living in the UK who have a child diagnosed with autism showed that stigma was associated with little knowledge of the pathology, poor Somali vocabulary about autism and the spread of prejudice about mental disorders and invisible disability. Lack of knowledge refers to the categorization of behavioral problems as lack of education, resulting in social rejection, some parents preferring to hide their child from the opinion of others. The study is consistent with other studies conducted in Australia, India, Pakistan, Nepal, suggesting that stigma continues regardless of cultural beliefs .
(4)The study of Korean immigrants from the US on the internalized stigma of parents of children with autism showed their perception of community relationships. The parents said that they felt pity from those around them, as well as feelings of isolation, being finally avoided in the community. They also noticed the reluctance of other parents to let their children interact with their child, in schools and kindergartens they prefer to hide the child’s diagnosis for fear of social rejection .
Looking back, the word autism, was first used by Bleuler to describe social withdrawal from schizophrenia, a word later reused by Kanner and Asperger to describe identified behavioral and social deviations and language. The association with schizophrenia has given a negative connotation to the word. Bettelheim later stated that cold mothers, unable to give affection to children, are to blame for the development of the child’s disorder, a perception that stigmatizes mothers, causing feelings of guilt and denial. The media representation of the autistic child as a person with a fragmented mind and personality and the look of the disease itself as a determinant of family fragmentation, given that many families divorce, further creates stigma .
From then to now
Since the beginning of the recognition of the diagnosis of autism, the pathology has undergone remarkable changes. From a rare disabling disease, it is now common and has increased awareness and acceptance, being framed in neurodiversity, a term promulgated by associations for children with autism in the US. Under the umbrella of neurodiversity, the term atypical and neurotypical is thus antithetical, emphasizing the need to understand the peculiarities of the brain of neuro-atypical children compared to the typical ones, the aim being to reduce the degree of stigma .
People subject to stigmatization are those who do not conform to the ideal modern worker: independent, individualistic who rely only on their own abilities. Workplace flexibility has allowed those with autism to be included in the labor market, thus creating a new image of an atypical life . Sometimes exceptional visual memory, as well as the ability to hyper systematize (a concept introduced by Baron Cohen) can be used as an asset in certain jobs. Autism rights movements advocate the acceptance of neurodiversity, referring to the neurological variations in the brain of the general population. Baron-Cohen in 2009 attests to the stigmatizing role of the diagnosis as a disability and supports its name as a condition .
Greater flexibility given to the sense of personality can be seen in several areas of existence, starting from fluidity in classifications based on ethnicity, race, gender, along with this new image of neurodiversity, in which the atypical is considered normal . Faster recognition and increasing the level of information and education of the population has led to increased acceptance in the community.
In the US, the inclusion of children with autism in schools has begun to bring material benefits, so more and more universities have developed and provide special education programs for them, just to receive additional funding. Several non-profit organizations have also been set up to inform and raise awareness of neurodiversity .
This new condition of normalcy was described by Andrew Solomon in the book “Far from the Trunk” as “this something different, inhomogeneous that unites us.” The exceptional is ubiquitous, he wrote, considering that the typical ones are in fact the rarity and feel alone . This vision can increase empathy and acceptance. But stigma is universal and protects man from dangerous individuals. But there is nothing innate in causing shame, alienation, and discrimination. These are attitudes learned within communities. Culture puts stigma and mental illness together, but they can certainly be separated .
In his book “Neurotribes – The Forgotten History of Autism,” Steve Silberman invites us to look at neurodiversity in relation to human operating systems, leaving aside the labeling given by the diagnosis. Like the proponents of neurodiversity, it highlights the perspective of looking at the different behaviors and ways of interaction and social reporting manifested by these children, as gifts and not anomalies or errors, or puzzles to be solved. In this way, focusing on increasing the quality of life of these children and their families, their efficiency and productivity will increase, decreasing the perceived stigma. By changing the perspective of disability or enigma, the diagnosis of autism becomes less discouraging .
Studies show that stigma is perceived by parents of children diagnosed with ASD. This leads to social withdrawal, feelings of shame, guilt, and denial of diagnosis. All this can be a danger because it postpones the family’s use of social services and the specific intervention, so necessary for recovery, the chances increasing if the intervention is started at an early age.
Given the growing number of those diagnosed with autism and attempts to understand and adapt, the tendency is to look at them as a different community, with resources that can be harnessed. Considering the proponents of neurodiversity, support programs and associations, they can continue to play a role in de-stigmatizing and changing perception.
- Dobrescu I. (2016). Manualul de Psihiatrie a Copilului și Adolescentului, Vol I, editura Total Publishing, pag. 264-269.
- Zamfir C. (1993). Dicționar de sociologie urmat de indicatori demografici, economici, sociali și sociologici, București, Babel, pg. 603-604.
- Grinker R.R. (2020). Autism, “Stigma,” Disability A Shifting Historical Terrain, Current Anthropology Volume 61, Supplement 21
- Martin D.N. (2013). The Ever-Changing Social Perception of Autism Spectrum Disorders in the United States, Explorations | Social Sciences, pg. 160-169
- Farrugia D. (2009). Exploring stigma: medical knowledge and the stigmatization of parents of children diagnosed with autism spectrum disorder, Sociology of Health & Illness Vol. 31 No. 7, pg. 1-17
- Liao X., 2019, Stigma among parents of children with autism: A literature review, Asian Journal of Psychiatry, 45, pg. 88-94
- Mazumder R. (2019). Stigmatization of Children and Adolescents with Autism Spectrum Disorders and their Families: A Scoping Study, Review Journal of Autism and Developmental Disorders, pg. 2-12
- White R. (2019). Is disclosing an autism spectrum disorder in school associated with reduced stigmatization? Autism, 1–11.
- Gray D.E. (1993). Perceptions of stigma: the parents of autistic Children, Sociology of Health & Illness Vol. 15, pg. 102-119 Grinker R., 2020, Autism, “Stigma,” Disability, Current Anthropology Volume 61, Supplement 21
- Nam K. (2015). Stigmatization internalized by parents of children with autism and coping mechanisms to combat its effects, A Project Presented to the faculty of the Division of Social Work California State University, Sacramento
- Rusell G. (2012). Dilemmas, diagnosis, and de-stigmatization: Parental perspectives on the diagnosis of autism spectrum disorders, Clinical Child Psychology and Psychiatry 17(2) 229–245
- Selman L. (2018). ‘You are labelled by your children’s disability’ – A community-based, participatory study of stigma among Somali parents of children with autism living in the United Kingdom, Ethnicity and Health, 23(7), 781-796
- Rapp R. Ginsburg F. (2011). Reverberations: disability and the new kinship imaginary. Anthropological Quarterly 84(2):379–410.
- Solomon A, 2015 Khanam R. (2018). Social Acceptance of Special Children with Autism Challenges of Parents in Bangladesh, Society & Change Vol. XII, No.2, pg. 77-83
- Solomon A. (2015). Departe de trunchi, Editura Humanitas.
- Silberman S. ( 2016). Neurotriburi – istoria uitată a autismului, Editura Frontiera pg. 384-388.