Trauma, Stigma, and Autism

Developing Resilience and Loosening the Grip of Shame

Gordon Gates

• Publisher: Jessica Kingsley Publishers
• Year: 2019
• Print ISBN: 9781785922039
• eBook ISBN: 9781784504779
• Topic: Psychology
• Subtopic: Autism Spectrum Disorders
• Index: Psychology

This book presents ground-breaking ideas based on current research on how stigma can cause bodily felt trauma in stigmatised or marginalised people, particularly those on the autism spectrum. Gordon Gates draws on his academic research, professional knowledge as a counsellor, and lived experience with Asperger's syndrome to provide a unique framework for combating the psychological and emotional impact of stigma.

Explaining how to develop resilience and essential coping mechanisms to manage distress and improve mental health, this book casts new light on the significance of stigma in mental health, and marks a new way forward for anyone who has been made to feel like an "outsider".

Part C

THE IMPACT OF
STIGMA AND
TRAUMA RECOVERY

Chapter 5

STIGMA RESILIENCE

The participants in my research discussed various ways they build resilience to help protect them from stigma. Some involve developing behavior aligned with socioconventional expectations to make relations with others flow more smoothly. One participant said, “Over the years I have learned that people like it if you let them talk more.” Another said, “I usually find another good thing is to ask people to talk about themselves.” Others talked about learning to make better eye contact and not stimming (self-stimulating) in public. Learning neurodominant conventions of social interaction can be unnatural and self-defeating, not unlike forcing a left-handed person to use their right hand. The participants talked about having to “fake it” all the time, which takes a lot of energy. One lamented, “I have grown up being someone I’m not.” These kinds of strategies, which might be called “performing normality” (Lester and Paulus 2012, p.267), can make life easier all around, but they can also be adopted as a protective shield against stigma that makes neurodominants feel more comfortable while it drains the energy of ASHFA. One participant made me think of a video game in which a certain number of positive rewards must be accumulated to keep the shields from dropping. Such behavioral strategies are often seen as helpful skills to improve communication, but they merge insidiously with defensive measures of forced compliance to avoid stigma from dominant others. Such strategies can become a program of assimilation. Going along with them can be seen as reasonable efforts to function in socioconventional society or attempts at self-camouflage and even auto-annihilating self-denial. The French philosopher Foucault might refer to such acts as a form of bio power, a kind of social policing “that sustains itself through its own mechanisms” (Foucault 1975/1995, p.177). The efforts to “blend in” reported by participants in this study can be associated with social pressure to conform that is disciplined by stigma.

Participants generally agreed that the use of stigma cloaking, or strategies to appear “normal” as a protective factor against stigma, become less urgent with age. One participant said, “I allow myself to do more, I guess, autistic things as I get older. I have come to know that for me it’s normal, so I don’t really care anymore.” Another participant said, “I’ve just come to the understanding that I’m weird and that’s OK.” A third participant emphasized that “it’s really important to know where your boundaries are and when, where, and how to push them.” Such self-acceptance was reported by participants as building a core of fundamental stigma resilience that grows with experience and maturity. The only exception to this was one participant who reported intense anxiety that made her experience of stigma seem to worsen with age.

The importance of “getting out and talking to people, especially around events that are based on food” was discussed enthusiastically by one participant. He advised, “When you want to go and do something, just do it.” This participant was very active in the community, participating in sports and other events. He also described how stigma can be encountered at any time, which means that going out sometimes takes courage. He says, “Some people don’t want to talk to me and some people ignore me. I just try to talk to the people who want to talk to me, and the ones who are not willing to talk to me I just ignore.” This may sound like nothing less than common sense, but for someone who deals with stigma regularly it is hard-won wisdom. I myself find social events an anxiety-provoking invitation to blunders and stigma and am with many of the participants who prefer to stay home. Developing an attitude in which you focus on positive interactions and not stigma and rejection takes practice. Another stigma resilience factor discussed by participants in this regard is spirituality. One participant attends a spiritual healing community on a monthly basis. Others attend church, and still others talked about the importance of developing a sense of purpose and meaning. For some this involved social interaction, for others it was intensely private. Every individual, and every ASHFA, is unique.

A common theme was the importance of caring, supportive adults during childhood. Parents, in particular, were described as either setting up stigma resilience or worsening stigma depending on whether they were able to foster secure attachment. Supportive parents can make a positive difference in anyone’s life, but parenting a child with autism is fraught with challenges that make it difficult to be consistently available and supportive. Research has shown that parents of autistic children report higher levels of stress, more mental health issues, and lower satisfaction with work (Watt and Wagner 2013). One participant reported that the parents of many of his autistic friends separated “because they couldn’t handle the stress.” He added, “I’m lucky because my parents just kind of rallied around the fort.” His parents were privileged and had access to resources none of the other participants in this study had access to. With all the challenges involved for autistic individuals, parents, and their families, it is interesting that research shows autistic children are as likely to develop secure attachments as socioconventional ones (Takahashi, Tamaki, and Yamawaki 2013).

Teachers were also mentioned by participants as either building stigma resilience or adding to stigma. Specifically, one participant said “everything changed” when he got a teacher who encouraged him to pursue his obsessions and directed his energy into special projects that boosted his self-esteem as well as his prestige among peers. Another participant described how the principal of his school added to his experience of stigma by unintentionally colluding with the bullies at school by not recognizing his victimization:

I remember once being out on the playground and these kids grabbed my book and then they literally held me down and beat me up. We got sent to the principal’s office and the other kids are just sitting there while I’ve got blood coming down my nose and the principal says, “Well, fighting is a very serious thing.” So I’m thinking like, do you know what’s going on at all?

Developing friendships is notoriously difficult for this population, yet one participant talked about how lucky he felt to be supported by friends throughout his life. He specified that “I’ve been very lucky that a lot of my friends haven’t been neurotypical, so we’ve just been a little slow with each other.” His mother used to refer to him and his friends as “the island of misfit toys.” She used to joke with the participant that “you could line up a hundred people, and I would find the weirdest one in the group.” Having friends who are also struggling with challenges of autisticy provided this participant with a common ground of understanding as well as a social arena without the stigma and incongruent social expectations of mainstream others. The participant described it as “a weird comrade in arms thing.” Here the theme of telegraphic perception emerges again; how do individuals diagnosed with autism or struggling with the challenges of autisticy recognize each other? In the absence of consciously visible signs, how do victimizers recognize the vulnerability of such individuals? We saw earlier that polyvagal theory provides a way of seeing trauma that goes far beyond DSM diagnosis and establishes a research-based physiological framework accounting for the subtle social cues that provide information about us to each other and activate safety distress in many situations. Encountering another ASHFA, unless other factors came into play such as anger, might trigger familiar safety cues and create feelings of comfort.

I was fortunate in this study that one of the participants had a roommate who expressed an interest in being interviewed. One was diagnosed with Asperger’s and one with autism. They not only agreed to be interviewed together but chose to be present during each other’s interview. It was inspiring to watch them support each other, stimulate each other’s ideas, and provide each other with a safe, caring environment. When one was asked about whether he felt he could contribute his strengths as a person to the community, he could not think of any strengths. His roommate immediately suggested, “You should tell him that you’re a Special Olympics athlete.” When one told about an experience with stigma and how upset he was that no one would tell him why they were upset with him, his roommate jumped in with “Maybe it was because they were jealous of something you had that they didn’t.” When one of them was being interviewed, the other picked up the recorder and held it closer to his roommate to make sure his voice would be heard.

Love relationships involving individuals with ASHFA have been explored (Aston 2003); long-term relationships with non-romantic peers have not. Klin, Volkmar, and Sparrow (2000) note that long-term relationships with peers can be a source of stigma resilience, although they acknowledge they are only drawing on anecdotal evidence. The authors suggest, “peers do not make explicit demands, but they also make few allowances” (p.397). The two roommates I interviewed seemed to make allowances for each other’s uniqueness out of familiarity and mutual understanding. When asked the advantages of having a roommate with ASHFA, they both immediately agreed that “finding a roommate that won’t lie, cheat, or steal from you is worth more than their weight in gold.” They described instances of being taken advantage of and robbed by socioconventional roommates. I suspect an ethnographic study of roommates on the spectrum would probably be an insightful source of information about an under-documented area of stigma resilience. Both were on income assistance, and because of low assistance levels, finding a roommate in such instances can be almost as fundamental as the need to pick up groceries.

One of the participants in this study had been married to an individual of the opposite sex also diagnosed with Asperger’s for ten years. Another had been with a socioconventional same-sex partner for the same length of time. Each described different challenges. Such intimacy involves complications that roommates do not have to deal with. The participant with an autistic partner reported, “We have tons of communication issues, and there are many misunderstandings. We each have problems with getting frustrated when the other interrupts what we are focused on, because we get so intense we can’t switch to something else and then switch back.” She was able to describe these challenges without blame or anger. The couple clearly had their challenges, but they understood each other. Their expectations of each other were in sync. The participant with a same-sex socioconventional partner enumerated several issues over which his partner gets frustrated with him. He said, “I can’t validate,” meaning he did not feel able to provide his partner with emotional validation. He said his partner gets angry because the participant is on the computer too much and “can’t see obvious little things” such as items on the floor that need to be picked up. He also spoke about frequent conflict resulting from his routines being broken. I did not think to explore the degree to which the autistic couple met each other’s needs, but if the roommates are any indication they probably found this less challenging than sociophenomenally mixed couples. Yet no matter how intense, frustrating, or challenging, no participant reported their relationship to be stigmatizing. Rather, the intimate relationships discussed in this study were reported as a source of resilience and refuge from stigma where, as one participant said, “someone can accept me no matter what.” As with any relationship, there may be difficult times during which differences are ironed out and frustrations are vented, but these can lead to personal growth and deeper connection.

Resilience Research and Possibility

I’d like to share an interesting article I read the other day about autism and trauma resilience. The author (Rigles 2017) claimed it was the first research paper ever on the topic. She based it on experiences of developmental trauma codified into “adverse childhood events” and identified nine types of occurrence including financial problems, divorce, parent mental health issues, witnessing domestic abuse, and being a victim of discrimination. Her methodology depended on parents to note the incidents, making the recording process sensitive only to overt events. Incidents such as stigma and other forms of invalidation taking place silently with such things as a look or an omission were not captured despite their potentially hurtful effects and cumulative traumatic impact.

The study employed a sample of 56,746 people interviewed by telephone. Results validated previous research showing autistic children experience significantly more “adverse effects” than mainstream children, have decreased levels of physical health, and lower overall resilience. The most interesting thing is a question left hanging by the author based on a surprising result. Autistic children did not show the same tendency as mainstream children to have diminishing resilience in the face of increasing negative experiences. The more negative things that happen to socioconventional children the less ability they have to integrate and move forward. A higher occurrence of “adverse effects” reported by the parents of Autistic children was not associated with parental ratings of lower resilience. Why not? The author admitted that her study could not answer this question and noted the need for further research. She suggested that Autistic children’s lower overall levels of resilience may make it more difficult for observers to discriminate negative impacts on resilience.

Some of the researcher’s proposed explanations can be seen to inadvertently perpetuate negative autistic stereotypes. For example, she suggests negative experiences may “push these children further into their own world making it appear as though they were not affected” (p.199). This could be taken as an invitation to find better ways of appreciating the experience of Autistic children, so we can more fully understand and provide better support. It could also be taken to reinforce the perception that autistic people aren’t reachable. Another offensive implication in the researcher’s discussion involves a specific finding. Of the different sources of trauma investigated in the study, only divorce was associated with lower resilience in autistic children. She took this as a possible indication that autistic children are not impacted by emotionally traumatic and invalidating events unless their routines are broken. This feeds a negative stereotype of autistic people being devoid of human feelings and fundamentally disconnected from others. The death of a parent and incarceration of a parent were also on the list of adverse events, and these would interrupt a child’s routines just as disruptively.

Rather than using it as an example that demonstrates autistic aloofness, parents divorcing can be seen as unique because it involves a greater personal crisis of invalidation. If a parent dies, this is awful but can be understood as no one’s fault. If a parent is incarcerated, it can be explained as bad decisions that got them in trouble. When divorce happens, it may bring already stressful feelings of discord rushing to the surface. Children may already be traumatized by witnessing their parents not getting along. They may already be blaming themselves for the fighting because they know they cause trouble in ways they cannot understand or express. Divorce shatters the safe emotional security of a child’s world as few other events can, and autistic children are no different. That divorce is the only variable associated with deceased resilience could be taken as evidence that autistic children are more emotionally present than they are often given credit for and more sensitive to invalidation than conventionally thought. This could be an importantly stigma-challenging research result, not only to break through autistic stereotypes but in our growing recognition of invalidation trauma. Maybe autisticy, as Rigles suggests, provides its own kind of protective factor against certain kinds of trauma. It is possible that autistic children, rather than being flawed in ways that make them insensitive to adverse emotional events, are more resilient and have strengths which have not been sufficiently appreciated or explored. Not just more research is called for in this area, but research informed by the unique perspective and experience of autistic people.

Chapter 6

STIGMA CLOAKING

Building stigma resilience involves self-care strategies that make us stronger and less vulnerable to being hurt, and help us recover more quickly from stigma and stigma activation. Stigma cloaking, on the other hand, refers to strategies of stigma management that deflect or avoid the impact of stigma. One maneuver participants felt targeted by but did not report engaging in themselves was offloading stigma. Goffman (1963) referred to this as “ambivalence,” a process through which a stigmatized individual parries stigma by “taking up in regard to those who are more evidently stigmatized than himself the attitudes the normals take to him” (p.107). The participant identifying himself as PHA (person living with HIV/AIDs) said, “The thing that bothers me the most is when oppressed people oppress other oppressed people. I just don’t get it. My mind literally shuts down.” He talked about how he sees this happen “not just in the HIV c...

Table of contents

• Cover
• Title Page
• Contents
• Part A: Stigma, Autism, and Invalidation
• Part B: Diagnosis, Diversity, and Autisticy
• Part C: The Impact of Stigma and Trauma Recovery
• Part D: Critical Autism: Destigmatizing Autistic Experience
• References
• Subject Index
• Author Index
• Join Our Mailing List
• Acknowledgments
• Epigraph
• Dedication
• Copyright
• Of Related Interest