Internalised versus Externalised Presentation Autism.
- Kate Hoad
- Apr 7
- 6 min read
Author - Kate Hoad Historically, males have been recognised as having autism at higher rates than females. According to the current Australian Bureau of Statistics, 3.5 Australian males are diagnosed on the spectrum to every one female. Female prevalence rates are increasing very slowly over time, however the National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders suggests that the reported gender ratio prevalence rates still may not reflect the true gender ratio of autism, and that boys are still more likely to be identified as being on the spectrum than girls, even when their symptoms are at the same level.
But before we delve further into the nitty gritty of the subject matter, I want to introduce myself and my background. I’m hopeful you’ll see the relevancy of this information by the end of this article.
Firstly, I am a late-diagnosed female Autistic with ADHD (that is, AuDHDer), with three Assigned-Male-At-Birth (AMAB) AuDHD kids, one of whom has a Pathological Demand Avoidant profile. My wonderful husband is also AuDHD, with a PDA profile. Our first in-family diagnosis was our middle child 7 years ago, and our most recent was just last year. As seems typical for many of our families, the kids were diagnosed first, after thinking “Maybe they’re quirky, just like we are…” only to then realise, that yes, quirky is one thing, but that our amazing Autistic and/or ADHD qualities were in fact, more than just quirks.
Secondly, I’ve been a Paediatric an Occupational Therapist for close to 18 years, well over the number of years I've identified with being AuDHD. Over that time, I’ve been so lucky to witness the shift in knowledge around Autism, ADHD and varying presentations. I’ve also conducted many and varied assessments with Autistic Individuals for almost that whole 18 years. Within the past 7 years specifically, I’ve been far more specifically focused on this aspect of practice. I am trained to use the ADOS-2, but I’ve also been doing observational assessment of Autistic and ADHD traits for far longer than I’ve been using this so-called Gold Standard assessment.
And as the final part of my introduction:
I don’t believe in “Female Presentation Autism”.
That is a scary thing to write down – because many people will immediately take this to mean that I don’t believe there are Female Autistics – which is not at all my message - I am one, after all. Others may take it to mean I don’t believe there are specific ‘Female’ traits – and this is more closely aligned to what I want to talk about.
We are finally getting to the stage that there is more knowledge about the traits that exist more often in AFAB Autistics, heck, there are entire organisations out there these days devoted to ‘women and girls on the spectrum’. I want to be clear, I’m NOT saying “I don’t believe in Female Presentation Autism” because I think such organisations or female-oriented supports shouldn’t exist – but rather - it’s that I think the net needs to be cast wider than simply labelling ‘girls’ autism and typical or ‘boy’ autism symptoms and needs as different, and doling out supports separately for each.
Read on if you care to know my proposal instead…
Female Presentation Autism or ‘Female Autism Phenotype’ this is a term that typically refers to the ‘different’ symptoms that Autistics girls are meant to have that would be different from the core stereotyped characteristics of autism (i.e. having extremely poor social skills, ‘repetitive behaviours’ and highly-focused interests), like rocking backwards and forwards, and a fascination with trains. However, in autistic women and girls these behaviours and interests are supposed to be far more similar to those of non-autistic women and girls, such as twirling hair and reading books, and as such may go unnoticed despite the greater intensity or focus typical for autistic people.
Box 1: So-called "Female-Presentation Autistic" signs and symptoms
So that’s the problem with that do you ask?
My concern with this is twofold:
The very fact that my Husband, 2 of my own 3 diagnosed kids, and about 50% of the boys that clinically I do identify as having strong Autistic traits (but who then may go on to hear they ‘don’t fit the diagnostic criteria’ according to many Paediatricians), fit squarely into Box 1 above, rather than Box 2 below, of ‘typical Autistic’ symptoms that are being looked for by these Paediatricians
Many AFAB Autistics present more with the ‘typical autistic’ traits in the box below. So are they then not considered Female? Are they ‘Male Presentation Autistics’?
Box 2: Core/Typical Autistic Symptoms
When this happens, these individuals are so much less likely to be identified as autistic, and therefore, to believe that their personality traits and associated daily challenges are the result of being a ‘defective (Neurotypical) human’ rather than a ‘typical Autistic’. Cue depression, anxiety and poor self-esteem – and that’s then what they get diagnosed with – completely ignoring the underlying reasons for their difficulties, and an explanation that would see greater understanding and compassion – both for themselves, and from others. Masking behaviours, where one works so hard to fit in, is exhausting, and in the longer term, leads to Autistic Burnout.
Autistic Burnout is described by the UK’s National Autistic Society as “a syndrome conceptualised as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterised by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.
As passionate and active in the allied health community as I am about identifying more Autistic girls (who have historically gone under the radar), and hence welcome the increased understanding of these traits, I’m also fighting for increased recognition that all of these traits are autistic, across the board. Why do we have to correlate this with, or label it as belonging to a particular gender?
A huge point to consider – alongside the inherent general sexism in this, is the fact there is now so much research coming out about Gender Diversity within the Neurodivergent population. Researchers often use ‘gender diverse’ as an umbrella term to describe people whose gender identities — such as transgender, nonbinary or gender-queer — differ from the sex they were assigned at birth. Cisgender, or cis, refers to people whose gender identity and assigned sex match.
Some Statistics on that:
People who do not identify with the sex they were assigned at birth are three to six times as likely to be autistic as cisgender people are 1, 2
The incidence of trans identity (defined by Strang et al.. in their 2014 paper as ‘a wish to be the other gender’) is higher in children with a diagnosis of autism (5.4%) than children with ADHD (4.8%), or neurodevelopmental disorders such as epilepsy or neurofibromatosis 1 (1.7%), or typically developing children (0-0.7%). 3
One online survey of adolescents and adults with autism suggested that 22% of females and 8% of males reported some feelings of gender variance 4,5
Findings in adolescents and adults recruited via internet samples and gender identity clinics, identify heightened autistic traits are often observed in those identifying as trans (e.g. Strauss et al., 2017) 6
So, back to my point - this should not be about gender. This should be about the presence of symptomatology, regardless of assigned biological or identified gender. There are some wonderful, thoughtful people out there proposing an alternative term instead, and I want to talk more about why we should be embracing this.
Internalising Presentation Autism.
This is a term that acknowledges that different presentations of Autism exist across the whole spectrum, and that nothing should be labelled as specific to either gender. We need to bring more understanding to this less visible, Internalised Autistic experience, which is often thought to be associated with women, girls and non-binary individuals, but is actually present in all genders. The traits in the box labelled ‘Female Autism” above, apply to everyone regardless of gender, under the term Internalising Presentation Autism.
This, is what we must fight for the understanding of, so that all of our neurokin can be recognised, and there is less risk of burnout.
References:
1. Warrier V, Greenberg DM, Weir E, Buckingham C, Smith P, Lai MC, Allison C, Baron-Cohen S. Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals. Nat Commun. 2020 Aug 7;11(1):3959.
2. Strang JF, Janssen A, Tishelman A, Leibowitz SF, Kenworthy L, McGuire JK, Edwards-Leeper L, Mazefsky CA, Rofey D, Bascom J, Caplan R, Gomez-Lobo V, Berg D, Zaks Z, Wallace GL, Wimms H, Pine-Twaddell E, Shumer D, Register-Brown K, Sadikova E, Anthony LG. Revisiting the Link: Evidence of the Rates of Autism in Studies of Gender Diverse Individuals. J Am Acad Child Adolesc Psychiatry. 2018 Nov;57(11):885-887.
3. Strang, J.F., Kenworthy, L., Dominska, A. et al. Increased Gender Variance in Autism Spectrum Disorders and Attention Deficit Hyperactivity Disorder. Arch Sex Behav 43, 1525–1533 (2014).
4. Walsh RJ, Krabbendam L, Dewinter J, Begeer S. Brief Report: Gender Identity Differences in Autistic Adults: Associations with Perceptual and Socio-cognitive Profiles. J Autism Dev Disord. 2018 Dec;48(12):4070-4078.
5. Dewinter, Jeroen, Hans De Graaf, and Sander Begeer. "Sexual orientation, gender identity, and romantic relationships in adolescents and adults with autism spectrum disorder." Journal of autism and developmental disorders 47 (2017): 2927-2934.
6. Strauss, P., Cook, A., Winter, S., Watson, V., Wright Toussaint, D., Lin, A. (2017). Trans Pathways: the mental health experiences and care pathways of trans young people. Summary of results. Telethon Kids Institute, Perth, Australia
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