Episode 1: Introduction
This is the transcript of the episode. To listen to the episode please click on your preferred podcast button.
No AI is used at any point in this podcast.
What is this podcast about?
The Neurogender podcast is going to explore recently published research on a number of different neurodivergent labels. The research I am most interested in are those involving neurodivergent women in midlife and later life. I am a neurodivergent woman who was confirmed autistic in February 2023, two months before my fortieth birthday. My autism confirmation changed my life in numerous ways. There are many other podcasts who talk about what it’s like to live as a neurodivergent person in a neurotypical world, but not so many who are talking about current neurodivergent research. A lot of research is done on children who are neurodivergent, but what about those of us who were confirmed as neurodivergent in mid or later life? I am going to talk about what research is being done on women who are not confirmed as neurodivergent in childhood. As a gender studies Master’s student I am very interested in what research is being done on neurodivergent women throughout our lifespans, not just as children. I am going to take a specific neurodivergence each season and talk about what research is being done around the world. The content will be academic, but the idea is to make the research accessible for non-academics. If you want to read the research yourself I will provide links in the show notes for the ones mentioned.
As time goes on and more research is completed there will be updates I will want to share with you. These will be Snippets rather than full episodes, and I will endeavour to make it clear that these will be additional material to existing episodes.
What do we mean by neurodiversity, in general and in this podcast?
In Nick Walker’s incredible book Neuroqueer Heresies she describes the terminology of neurodiversity very clearly. Here is what she says about each term:
“Neurodiversity is the diversity of human minds, the infinite variation in neurocognitive functioning within our species…The neurodiversity paradigm is a specific perspective on neurodiversity – a perspective or approach that boils down to these fundamental principles: 1. Neurodiversity is a natural and valuable form of human diversity. 2. The idea that there is one “normal” or “healthy” type of brain or mind, or one “right” style of neurocognitive functioning, is a culturally constructed fiction, no more valid (and no more conducive to a healthy society or to the overall well-being of humanity) than the idea that there is one “normal” or “right” ethnicity, gender, or culture. 3. The social dynamics that manifest in regard to neurodiversity are similar to the social dynamics that manifest in regard to other forms of human diversity (e.g., diversity of ethnicity, gender, or culture). These dynamics include the dynamics of social power inequalities, and also the dynamics by which diversity, when embraced, acts as a source of creative potential…The neurodiversity movement is a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent…Neurodivergent means having a mind that functions in ways which diverge significantly from the dominant societal standards of “normal”. Neurodivergent is quite a broad term. Neurodivergence (the state of being neurodivergent) can be largely or entirely genetic and innate, or it can be largely or entirely produced by brain-altering experience, or some combination of the two. Autism and dyslexia are examples of innate forms of neurodivergence, while alterations in brain functioning caused by things as trauma, long-term medication practice, or heavy use of psychedelic drugs are examples of forms of neurodivergence produced through experience…The terms neurodivergent and neurodivergence were coined in the year 2000 by Kassiane Asasumasu, a multiply neurodivergent neurodiversity activist…Neurotypical means having a style of neurocognitive functioning that falls within the dominant societal standards of “normal”… Neurotypical is the opposite of neurodivergent. Neurotypicality is the way-of-being from which neurodivergent people diverge. Neurotypical bears the same sort of relationship to neurodivergent that straight bears to queer…The opposite of neurotypical is neurodivergent, not neurodiverse. Neurodiverse cannot be used to mean “non-neurotypical”, because neurotypical people, like all other human beings, are part of the spectrum of human neurodiversity. The opposite of neurodiverse would be neurohomogenous (meaning “composed of people who are all neurocognitively similar to one another”).”
In this podcast I am going to use the terms outlined by Nick Walker in this way and while it can seem dense at first, in the correct context those terms become second nature to use. I highly recommend her book Neuroqueer Heresies and I’ll put those details in the show notes.
This podcast is called The Neurogender podcast, and the word means to have a gender linked to one’s neurodivergence. Traditionally this might have referred to the way boys and men have been more often confirmed as autistic than girls and women, for example. I am using this word to signify my interest in how gender relates to neurodivergence, in particular in the field of academic research.
Why talk about neurodivergence in women and not in men? What about non-binary and Trans people, or are they included too?
I decided to find research on neurodivergent women in particular because there just isn’t that much around, and even less on non-binary and Trans people, and the research that exists needs to stand out more if it’s going to make an impact on the lives of the people it’s gathering data on. The majority of neurodivergent research is on children, and historically, mainly on neurodivergent boys. Why this happened is very interesting and actually forms the backbone of why it’s so important to highlight research done on girls and women. Societal expectations are different for neurodivergent boys and girls and men and women, something that isn’t well known, although perhaps is becoming more so in recent years. The prevailing theory is that as boys behaviour is generally more outgoing, rambunctious, and more boisterous that girls, when they behave differently it becomes something everybody notices. If a boy is showing characteristics of autism, for example, which is different in every autistic person, they might be introverted, absorbed in a special interest instead of socialising, and become distressed at loud noises. Immediately those characteristics are seen to be “not normal” behaviour for a boy and he is taken to a doctor. For girls, they are expected to be quite different from boys, perhaps shy, reading books, playing dolls, not being noisy, are watchful and observant. Spotting an autistic girl then becomes a much harder enterprise. Unless she is an autistic child with high supports, or with an additional learning support need, her characteristics will not be abnormal enough to warrant a doctor’s visit. Hannah Devlin wrote a good general article about this in The Guardian in 2018, and you can find the details in the show notes. There are many factors that go into how girls and women, and anyone who presents more female than male, are often not acknowledged as autistic until much later life, including cultural expectations for different ethnicities and their children’s behaviour. Kimberlé Crenshaw described ‘intersectionality’ in 1991 to describe “various ways in which race and gender interact to shape the multiple dimensions of Black women’s employment experiences” (Crenshaw, 1991, p.1244). This word has since come to describe all the ways that minority differences can overlap to affect the experiences of people, in this case, neurodivergence with gender, or ethnicity, or culture. I will cover this fascinating intersectional issue in an upcoming episode. Of course, every autistic person is not the same, and each child has their own personality that will influence getting a confirmation of neurodivergence, but there are many reasons why many women who are in midlife and older age today have never received the supports and the self-knowledge and strength a confirmation can bring because of these cultural issues.
What about non-binary and Trans people and neurodivergence?
It has been noted in academic literature that gender identity dysphoria can be present quite often in people who are neurodivergent, most notably seen in the recent scandal of the UK Gender Identity Development Service clinics (see show notes for details about Hannah Barnes’ 2023 book, Time to Think). This is new research and I will be covering this as well. While the research may not always be satisfactory, whatever research is there that involves different gender presentations I will be sure to cover, even if just to point out areas that need to be explored. And if you want to hear about specific areas of research to do with neurodivergence then please get in touch. My email will be listed in the show notes.
What’s going on with later life ‘diagnosis’?
I put ‘diagnosis’ in inverted commas and I’ll go into why I don’t use biomedical language shortly. While many neurodivergent women have spent their whole lives feeling like something is wrong, like they weren’t given the key to decode the world around them, it can be that only until major life events occur that it becomes too difficult to ignore. Those life events might be childbirth, a death of a significant member of their family, menopause, or having to live in a nursing home, for example. Imagine menopause for a neurodivergent woman who hasn’t been given the knowledge of their neurodivergence and ways of coping with it: she might experience physical discomfort like sweating, mood swings, skin itchiness and stomach upsets. Once again, each woman is different and each neurodivergence presents differently for each neurodivergent person. If she already has sensory issues from being neurodivergent and suddenly has to deal with this distressing array of new sensory issues from hormonal changes, things may become unbearable. And this doesn’t always happen at a convenient place where she can change or shower, she might be at work in a male-dominated job and have to deal with issues of misogyny on top of it all. She may be a woman of colour or from an ethnic background where any behaviour that isn’t quiet and polite could be misconstrued as anger, violence, and Other, and place her in danger. This is just an example of menopause, but there are a myriad of situations and neurodivergent characteristics that mean midlife and ageing into later life can be very problematic without supports. I believe that the more research is done on women in all these different circumstances will lead to better provisions and supports made available, and help women cope with something that, in the society we live in, can become a disabling situation.
What about neurodivergent researchers, inclusivity within research, and the different models of research?
I am a social scientist not a biomedical scientist, and the wording and types of research I will talk about on this podcast will reflect those things. The difference between the social model and biomedical model is essentially that while the biomedical model frames neurodivergent conditions as illnesses, something a doctor can ‘diagnose’, to be ‘managed and cured’, the social model frames neurodivergence as a variance in neurocognitive functioning within the multiple ways that humans differ from each other. Social scientists view the difficulties experienced by those with some forms of neurodivergence within society as a failing of society, and not of the neurodivergent person. They do not need curing or need to learn how to live like a neurotypical person (a criticism of Applied Behavioural Analysis by neurodivergent communities), rather society must become more inclusive of those who have different needs and require supports. The two models, biomedical and social, are very obviously at odds with each other when theories of disability are examined. When framed within the social model, a person may be disabled by a society that doesn’t accommodate their differences, but they may not describe themselves as disabled. They are only limited by their differences by the way they are viewed by society and their ability to live in the world around them.
Another bias against neurodivergent people is seen in the research itself, in its researchers who are gathering data. Until recently, you would never have found neurodivergent researchers gathering data on neurodivergent participants for fear of observer bias (where researchers see what they want or expect to see), interviewer and researcher bias (where the behaviour of the researcher affects the participant in some way), and cognitive bias (where the mind creates short-cuts to process the information rather than thinking critically). There are now many neurodivergent researchers who are interested in gathering data on neurodivergent participants, so what changed? Incredible autistic researchers, like Monique Botha at the University of Sterling, Scotland, challenge this stereotype of autism every day. In a 2021 article (see show notes) she explained the troubling so-called objectivity of neurotypical biomedical researchers, challenged the way autism is spoken about in such dehumanising ways, and how being involved in research allows her to be an academic, activist and advocate for other autistic people.
You won’t hear me talking about ‘diagnoses’, describing neurodivergence as an ‘illness to be cured’, or as a ‘condition’. Rather, I’ll be using social model language that doesn’t pathologise the normal differences in the neurodiversity of humans, or frame them as characteristics they must learn to mask or conceal from other people who are ‘normal’. As far as I am able, I want to talk about research that will help to place neurodivergent people back into society with better understanding about themselves and how we can all support each other.
In this podcast I will be using identity-first language (such as ‘autistic person’) rather than person-first language (like ‘person with autism’), which is my personal preference, although some people prefer the opposite. It is my feeling that my neurodivergence cannot be separated from who I am as an individual, therefore the identity-first language fits my sense of self. There isn’t a neurotypical person hiding inside of me waiting for my autism to disappear!
Where is neurodiversity research taking place? What is the social and cultural impact of neurodiversity research, and how does intersectionality come into it?
Some cultures more readily accept neurodiversity as a set of characteristics that have nothing to do with an individual’s morality or ethnicity. Most neurodivergence research happens in Northern Europe and North America. Most, but not all (see the 2019 Global Autism Prevalence Map in the show notes). In fact, there are only a few countries that do not conduct research on neurodivergent participants at all. And yet, as a result, some countries see neurodivergence as a Western problem when in fact cultural differences skew the reality of living with neurodivergent characteristics. There are some incredible first-hand accounts of what happens when parents of autistic children emigrate from a country where autism is seen as a social or moral failing to a country where it is viewed as a medical issue, and how they, and their families, cope with it. This is a fascinating concept to talk about, and a very delicate one, and I’ll try to bring those concepts in during the season. Intersectionality, as I have previously mentioned, describes the overlapping of different factors of a concept, and was originally a word that Kimberlé Crenshaw used to describe feminism and racial factors that overlap. She was pointing out that while white feminists in the second-wave of feminism in the seventies correctly found sexist and misogynist disparity between men and women, particularly in the workplace, they did not describe all women, they did not describe how feminism might impact women of colour or women from all ethnic and minority groups. Intersectional feminism takes into account all forms of oppression, not just the ones felt by the majority. In this vein it is important to include an intersectional approach when describing the gendered experiences of neurodivergent people, that Black mothers with autistic children will have a different experience with doctors, society, and their community, that people of colour – men and women – will receive different treatment, or maybe no treatment at all if their characteristics are tied up with social misconstruction of their identity. These are important and contemporary issues that tie in with my interest in human neurodiversity, and I will dive into this research as well as I am able, and when I am not, will bring in the participants or researchers to speak for their own experiences and work. If you are someone who would like to talk about this, or know someone who would, please get in touch.
Who am I?
Finally, a little bit about myself. I am an autistic mature student in Ireland. I am doing a Masters degree in Gender Studies, and hope to begin a PhD in 2025. I became aware of later life confirmation of neurodivergent conditions in women in 2019 and was in the very privileged position of being able to pay for a private assessment. I wanted one in order to ask for the supports I need from my place of study, and future place of work, who wouldn’t have been able to support me without one. I mentioned before that this podcast will preference academic research over my personal experiences of autism, and the only thing I will say is that it has made all the difference to my identity and self-worth. It was the key to decode my lived experience. I used the assessment service, The Adult Autism Practice, who were very professional and sensitive, and it was done entirely over Zoom. I will link the website in the show notes if you are thinking of taking an assessment but don’t know where to begin. This is not a podcast that particularly offers support or advice, instead I want to let the current research describe how neurodivergence is being studied. If you need support please contact a service or professional who you think would best support you at this time.
I hope you will join me in the coming episodes as I walk us through the current research on Autism in women and girls.
Thank you for listening. Join me next episode where I will talk about the current research on autism and masking. The research I have used in this episode can be found cited in the show notes. I am Alexa and this has been The Neurogender podcast.
Special thanks to the Ballyfermot Library Creative Studio where I record all my podcasts.
Show notes:
Adult Autism Practice website: https://www.adultautism.ie/
Barnes, H. 2023. Time to Think: The Inside Story of the Collapse of the Tavistock's Gender Service for Children, Swift Press.
Botha, M. 2021. Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production. Frontiers in Psychology, 12, 727542.
Crenshaw, K. 1991. Mapping the Margins: Intersectionality, Identity Politics, and Violence against Women of Color. Stanford law review, 43, 1241-1299.
Devlin, H. 2018. Thousands of autistic girls and women 'going undiagnosed' due to gender bias. The Guardian, 2018/09/14/T14:12:31.000Z.
Kranz, M., Zeliadt, N. & Horne, R. 2019. Global Autism Prevalence Map [Online]. Available: https://www.informationisbeautifulawards.com/showcase/4077-global-autism-prevalence-map [Accessed 2023].
Walker, N. 2021. Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities, Fort Worth, TX, 76114, Autonomous Press, LLC.