Diagnosing Autistic Women: A Sociological Issue

Diagnosing Autistic Women: A Sociological Issue
Susannah French
School of Sociology
Australian National University

Introduction

More often than not, clinical literature on Autism Spectrum Disorder (ASD) focuses solely on male children. This is perhaps unsurprising, given that studies suggest four times as many boys receive an ASD diagnosis as girls. What this bias means, however, is that female autism is often entirely overlooked. This has major consequences not just in medical diagnosing and understanding, but also for the lives of people with ASD.

This paper will explore how sociology can investigate women's experiences of autism. Unlike clinical studies, which see each case as an isolated problem, sociology asks us to observe social patterns of behaviour among autistic women and their broader social context.
Interviews with autistic women will be used to explore how social structure, rather than biological determinism, imposes restrictions on the behaviour of autistic women. This paper will also discuss the relationship my participants have with their diagnosis, reaching far beyond the doctor's office. This paper contributes not only to the medical field of autism studies, but also contributes to sociology by positioning autism as not just medicalised, but also gendered.

Research Questions
Today, I will be presenting three different case studies from my interview excerpts. These excerpts will explore their own answers to the following questions:
How knowledgeable is the clinician is about Autism, let alone the female profile?
How adequate are the autistic woman's (or their parent's) communication skills in the clinician's room?
What is the girl or woman doing in the clinician's room? How is she behaving?
Diagnosis – A Taken-for-granted Social Process
It is possible that differences in the diagnostic frequency of disorders for men and women are due to biological/physiological differences. However, Sociology's purpose is to challenge the "taken-for-grantedness" of what we consider "natural". Therefore, I argue that it is also equally likely these differences in diagnostic frequency reflect socialisation and social contextual differences (Tausig, Michello & Subedi, 2003: 26). Diagnosis serves an important social role. It confers social status to those who diagnose, and can have a remarkable impact on the social status of those diagnosed (Jutel & Dew, 2014: 1). Therefore, diagnosis is a social accomplishment and not something to be assumed or taken for granted.
Because "diagnosis" is such a complex social process, it becomes problematic for individuals if the gatekeepers of diagnosis and subsequent support of autism are unaware of female specific problems. Because of that lack of awareness, individuals and families will be powerless to get what they need (Hendricksx, 2015: 13). Many highly esteemed professionals in the world of autism are writing about, talking about and researching the idea that gender does matter when considering a diagnosis, profile and support. (Hendricksx, 2015: 19). However, according to autistic author Sarah Hendrickx, "knowledge of the way life is experienced by women on the spectrum is relatively new and, as yet, poorly understood" (Hendrickx, 2015: 18).
While the male or non-gender-specific experiences of ASD are also important, that discussion is beyond the constraints of this paper. Exploring the female experience allows us to discuss one of the most contentious conditions from a perspective we would not often hear. We can then discuss how their experiences deliver a fresh insight on the gendered experiences of autism. While all three case studies that I'm presenting today are different, "they are not at all a definitive picture of life for all women and girls with autism" (Hendrickx, 2015: 18).
The Personal Relationship with Diagnosis
One of the most striking aspects of all three of the case studies here was the deeply personal relationship my participants had with their diagnosis. All of my participants I discuss here fought to acquire their ASD diagnosis. At first, this may seem counter-intuitive; wouldn't these women want to resist being enrolled in the medical system? However, there were particular personal benefits to being diagnosed.
For these women and girls, they needed a diagnosis to help them make sense of their place in a world designed for neurotypicals. The goal was to see themselves as less stigmatised: not only would they receive more appropriate attention, but the "truths" of their self-understanding would be validated.
Ghosts of the Patriarchal Legacy in Western Medicine and What This Means for Female Autism
Jacqueline has had a very extreme experience with clinicians when seeking help for her daughters. In this excerpt, she discusses implicitly how clinicians of Western medicine still follow a patriarchal paradigm. She discusses how having her husband chaperone her to appointments was the only way clinicians would take her concerns seriously.
[AUDIENCE TO READ ON SLIDE!]
"But all that time it was me they blamed. I was too anxious they said. My anxiety was supposedly affecting her, they said
They didn't get it that it was a reactive anxiety, I was reacting to HER, not vice versa
and she wasn't a textbook baby. Well, she was a textbook autistic baby…
By the time we finally got to see a paediatrician, which is not automatic in this country, the diagnosis was fairly straightforward and her language issues were picked up as "semantic pragmatic disorder" so that was helpful, but we were only taken so seriously because my husband came to appointments from then on - if it was just me, I would have continued to be dismissed as a neurotic.
I was diagnosed last year with epilepsy - after 12 years of "seizures" being told they were panic attacks. Because it's so easy to fob a woman off as an overanxious mum than believe her and do some testing.
…That makes me angry actually. Really angry. It's only the UK, in the US it's very different."
Jacqueline's troubles in the doctor's office were many-layered. Part of this is down to the biased, and fundamentally social nature of diagnosis.
As Tausig, Michello and Subedi explain:
"Psychiatrists and psychologists are people. Like others, they absorb values, attitudes, and biases about personal behaviour as they grow up and as they experience the world. At the very least, it is difficult to keep such values and attitudes out of diagnostic decision making." (Tausig, Michello & Subedi, 2003: 137).
I discuss in the next case study how deeply social the diagnostic process is, rather than "objectively medical" or a simple matter of ticking boxes.
Jacqueline's problems in clinical setting also have to do with the mythology of the "irrational woman" that permeates Western society and in particular Western medicine (Bankey, 2001: 37). Without her husband, doctors silenced her worries and effectively turned them back onto her. But when her husband sat beside her, Jacqueline was transformed from an "over anxious", "neurotic" mother who was holding back her child, to a concerned and rational parent.
This may sound like a case straight of the 18th century but it would appear that according to Ruth Bankey:
"…while twentieth century medical practice has attempted to dispel itself of this patriarchal legacy, traces and ghosts of this pathology remain and are reinscribed onto contemporary subjectivities, identities and bodies." (Bankey, 2001: 37-38).
Evidently, these issues also apply to medical practice in the 21st century. How hard you have to work to achieve a diagnosis also depends on where you are situated geographically, as Jacqueline would explain later in her interview. In the UK you have to "pander to egos", whereas in the US a diagnosis is a "dime a dozen" and they will happily medicate you.
The fact that Western medicine follows a sexist paradigm is not news. But what is clear from Jacqueline's account is that this paradigm is still pervasive. Furthermore, how successful you are in the clinician's room is how well you can communicate your knowledge of autism to the clinician. Not only that, but it also depends on what the young girl in the room is doing at the time — as we will see here…
Performing Autism: How to Convince the Right Audience
Katrina is from Canberra and, from reading her response, you'll see that she has had a very different experience with clinicians than Jacqueline.
Katrina and her family were not aware of the symptoms of autism. However, how her daughter behaved in the clinician's room instigated the beginning of the diagnostic process.
[AUDIENCE TO READ ON SLIDE!]
"Meredith was not speaking. She also had many other autistic behaviours (like taking my hand and using it as a tool when she wanted something) that I was unaware at the time was a symptom of autism. I was worried she was deaf because she would not respond to her name….
…I had talked to our GP a few months earlier (without Mary) about my worries about her not talking, and he suggested we wait a few months and book in a hearing test. I waited a few months and there was no change and the hearing test showed she could hear so I took her with me to see our GP again. During that appointment she cased his office and upended a basket full of plastic specimen jars - then amused herself for a long time stacking them up neatly and emptying them out and stacking them up and emptying them out. My GP looked at her and said "we need to rule out aspergers" - and referred her to our paediatrician and a speech/language pathologist. That was the first time anyone mentioned to me anything about autism."
According to Erving Goffman, "how things (a setting or a situation) get defined matters enormously to what can subsequently occur in the situation and what is subsequently appropriate of convincing behaviour" (Dillon, 2010: 268). Much of what depended on that day in the clinician's room was how Katrina's daughter was behaving and interacting with the environment around her. If the child had just sat in the office quietly, then there would be no need for the clinician to exercise their authority to start the diagnostic process. Katrina also reveals that if the diagnostic process had not started for Meredith, it definitely would not have happened for her older daughter Molly shortly after.
[AUDIENCE TO READ ON SLIDE!]
"…But the second time around, you know... like I knew! We've done all this work, we've done all reading … So you start to understand what these sorts of behaviours mean. And so, you find yourself sitting in there trying to prove the diagnosis to the psychologist. You know... I wrote this three page letter to the psychologist about all the stuff we didn't talk about you know in the meeting and things like that.
Having understood that [her autistic traits] made a big difference to her being diagnosed or not being diagnosed. If I hadn't known to go in and explain all of those sorts of things, I don't think it would have been as simple for us."
From this current excerpt we can then understand that…
"Diagnosis is interactional. Layperson and professional come together to discuss what ails the former, and what remedy the latter can provide. It is ultimately social: two individuals, or more, with different roles, sometimes in one space (often in several). What happens next – negotiation, explanation, understanding, and follow-up – all depends on relationships, communications, beliefs, culture, education, and social status." (Dew and Jutel, 2014: 61)
So, far from being a straightforward process, the diagnosis of Katrina's daughters depended on a complex set of circumstances, actions and interpretations. If Katrina was not able to communicate her knowledge and negotiate effectively with the clinician, her children's autism would not have been investigated until much later — if at all. Much of this comes down to cultural background and social standing. Like many of my participants, Katrina is well educated and comes from a middle class background. So her experience with clinicians would be relatively easier than someone who did not have her background.
These issues discussed may appear obvious. But the fact that these are still issues means we have to take seriously what is experienced by these women and others like them.
Performing Autism Reprise: Unpeeling the Mask of Neurotypicality
For many of my participants, diagnosis came as a relief. They were at last able to lay their burdens down. Many have felt validated. Others have felt angry for all the blame and misdiagnoses that may have been laid upon them by themselves or others (Simone, 2010). The fact remains however that, "The diagnostic moment may turn the world on its head, instantly transforming the individual's approach to life itself. With serious diagnosis may also come changes in identity." (Jutel, 2014: 78).
Elizabeth has felt a mixture of these emotions. What was particularly interesting was when she discussed her own diagnostic process. While she felt the relief and validation, like many of my other participants, Elizabeth discusses her anguish when dealing with a particular clinician.
My data so far suggests that there is a lack of understanding of female autism. However, there is also a lack of understanding as to how complicated autism is as a condition among medical professionals. While this does not reflect every clinicians' behaviour, this is still a reality for many autistic women as it is expressed in this excerpt.
Much like Katrina, Elizabeth also had to find a way to negotiate effectively with the clinician. Like Jacqueline, Elizabeth also had to "pander to the ego" of the clinician to prevent her from dismissing her concerns.
As you can see here, even though Elizabeth was seeing a female clinician, the clinician's behaviour was damaging. It can be argued that even female clinicians still follow a patriarchal paradigm of medicine when dealing with conditions they are unfamiliar with.
In the face of dismissiveness from the clinician, Elizabeth had to unpeel her mask of neurotypicality for the doctor to recognise her legitimacy. As she describes here:
[AUDIENCE TO READ ON SLIDE!]
…So she really wanted it to be very textbook of this is how it is and I think that my intelligence sort of works in my favour and I was able to give that... if you like... I got really good at hiding my eyes instead of actually pushing myself to look at her and pushing myself to be the person I normally put on the mask on. I actually worked really really hard to strip my mask away and be as damaged... if you like.
It's a bad word but you know what I am... to be as... stressed, to be as non-functioning as I possibly could to give her what she needed to see um... and it took a lot for me to do that because I don't do that. I don't trust people enough to... show them that. So... yeah I think... she found it very difficult to give me that diagnosis, she kept saying to me "But you're an actress, but you are so high functioning and you're so... this and you're so that!" you know? And I just had to keep showing her that that's the mask that I put on and that's really hard work.
Her experience of unmasking is reminiscent of Goffman's impression management (1959). Elizabeth wanted to be successful in gaining a diagnosis because it would be the first step to better manage her life. To ensure that the clinician took her seriously, Elizabeth had to ensure a convincing role performance (Goffman, 1959) of how "damaged" and "unfunctioning" she has been and can still be in past instances.
However, Elizabeth expressed anguish at how she executed that performance:
[AUDIENCE TO READ ON SLIDE!]
... I feel like I tricked my way into it. I tricked her into giving me the diagnosis that I wanted and that sort of plagues me every so often when I'm sitting there going, "Awh..." When I'm in the mode of hating myself, I'll sit there and go, "But you tricked her into this. You don't really have Asperger's, you don't really have autism, you're just... you tricked her into it, you made her diagnose you that way and it's not real." But then I'll sit down and I'll read other women's experiences and remind myself that it is real, that, that... it all fits and it's just that her experience of autism is not mine...
So, although diagnosis was an important event for all three of my participants here, to say diagnosis is the solution to their problems is a misconception. I also challenge the assertion that "diagnosis is only the beginning"; a sentiment that is often expressed in autism literature. All of my participants' experiences will need to be validated time and time again, to doctors or paediatricians or psychologists. Regardless of how diagnosis is perceived, there is a difficult process ahead before achieving diagnosis. And even after diagnosis, there are still social barriers for women trying to manage their autism.
Conclusion
It is clear that the diagnostic issues I have discussed in this paper are manifold. Each respondent whose case I have presented today have all had different experiences in clinician's offices. The similarity between each case study is how much of a trial it is to pursue a diagnosis, particularly when a solution seems very clear. One solution that I would propose would be that clinicians need to update their understandings of autism. Another solution would be that clinicians listen more carefully to what the women are telling them, rather than purely how the women are presenting. However, that is another discussion for another time.
What I would like to bring your attention to is how my participants have chosen to respond to my questions. My participants talked at length about their misadventures with clinicians, the relationship they have with their diagnoses and what female autism actually is to them. I would not say my interview is part of any healing process for them. Yet they have chosen to be part of this research because they felt they were also contributing to the partial picture of this social problem. As sociologists we strive to question the taken-for-granted and what's settled in our society. However, what sociologists can take for granted is that the people we are talking to are the ones who can teach us the most about society.

References
Bankey, R. (2001) "La Donna é Mobile: Constructing the irrational woman", Gender, Place & Culture, 8:1, 37-54.
Dillon, M. (2010). Introduction to Sociological Theory. Blackwell Publishing: Oxford.
Goffman, E. (1959). The Presentation of the Self in Everyday Life. Double Day: New York.
Hendrickx, S. (2015). Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences From Early Childhood to Old Age. Jessica Kingsley Publishers, London.
Jutel, A. (2014) "When the Penny Drops: Diagnosis and the Transformative Moment" in, A. Jutel and K. Dew (eds.) Social Issues in Diagnosis, John Hopkins University Press: Baltimore.
Jutel, A. and Dew, K. (2014). "Introduction" in, A. Jutel and K. Dew (eds Social Issues in Diagnosis, John Hopkins University Press: Baltimore.
Simone, R. (2010). Aspergirls. Jessica Kingsley Publishers, London.
Tausig, M., Michello, J., & Subedi, S. (2004). A Sociology of Mental Illness – Second Edition. Prentice Hall, New Jersey