10 young women standing in a row smiling
Toolkit

Autism: It's Not Just for Males Anymore

Dr. Glenis Benson
This Toolkit is intended to inform educators, parents, and yet-to-be diagnosed females, transgendered and nonbinary individuals about an alternative presentation of autism. The ratio of males to females appears to be much lower than previously thought. Obstacles to diagnosing those who do not present with the male phenotype are revealed, and the overlap with sexual and gender minorities and with eating disorders are exposed. Problems with the classification system and diagnostic tools are illuminated and alternative tools are identified.
*Identity first language will be used throughout, not person-first language in deference to the wishes of adult advocates. Furthermore, autism spectrum conditions (ASC) will be used in place of autism spectrum disorders (ASD).

A word about the title. To be as inclusive as possible, this toolkit was NOT titled “Recognizing Females on the Autism Spectrum” as that could preclude a significant number of individuals who do not adhere to or identify with a binary gender.

Intended audience:

This toolkit is designed to sensitize educators, health care professionals as well as parents to the potential presence of autism in females, non-cisgendered males, as well as those who do not identify with a binary gender.

Objectives for the reader:

  • To understand that the gender ratio of 3-4.3 males to 1 female is a relic of the initial description of autism
  • To understand that multiple biases are at play to maintain a higher number of diagnosed males than non-males
  • To realize that the classification system, diagnostic tools, as well as research have all promoted the male phenotype of autism
  • To become familiar with the differences in presentation between autistic males and females
  • To actively seek to identify females, non-cisgendered males, transgendered as well as those who do not identify with a binary gender, so that they can receive appropriate supports
  • To understand the multitude of obstacles to female diagnoses

“Evidence that clinicians are missing girls with autism has been building for years. Because autistic girls tend to exhibit different traits than autistic boys do, they are frequently overlooked by teachers, doctors and standard diagnostic tools. Those omissions carry over into the research literature, where studies typically include three to six males for every female",

says William Mandy, a clinical psychologist at University College London.

 img1 Autism Spectrum Conditions (ASC) are all too often missed or identified late in females; subsequently these women are mislabeled or overlooked completely.1 We know they exist. In epidemiological studies the gender ratio is 2-3 males for every female. 2,3,4 Adult diagnostic clinics reveal a low ratio as well; in these clinics there are 2 males to 1 female.5 Mattila and her colleagues6claim that the ratio could fall to 1.8 males to every one female. 

Gender ratios

The ratio of 3/1- 4.3/1 males to females7 reflects the accepted ratio since the initial observation of the known condition. It was not questioned but rather was so deeply entrenched that it has been accepted as fact. But this ratio should not have been immortalized without being questioned and critiqued. Hartung and Widiger8 assert that if a gender is known to be predominant (which in autism we know it is), regardless of pathology, it is only responsible to explore the potential for bias in either the sampling or the diagnosis. Better late than never.

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Why are females overlooked or diagnosed late?

Autism has been thought of as a male condition since the seminal work of Kanner9 and Asperger.10 Both men identified autism in boys, and only later did Asperger relax that attitude and acknowledge that girls too could be autistic. Their characterization of the condition was then reflected in the classification system known as the Diagnostic and Statistical Manual (DSM).11

 

Diagnostic tools were developed that meshed with the DSM criteria for autism. For instance, upon direct examination,12 the ADI-R (Autism Diagnostic Interview-Revised)13 and the ADOS-G (Autism Diagnostic Observation Scale – Generic)14 related well to the DSM-IV-TR (Diagnostic and Statistical Manual, 4th edition, text revision).11 So, with great intention diagnostic tools perpetuated the criteria in the classification system which stemmed from Kanner and Asperger, further reinforcing that primarily males receive a diagnosis of autism.

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The way the diagnostic tools are currently designed, they lean to diagnosing the typical male ASC presentation.
15 They do not take into account the variability of autistic symptoms by gender.16 If females present symptoms not included in the diagnostic algorithms for tools like the ADI-R, then of course a diagnosis of autism cannot be made.17 Looking specifically at the ADI-R, (as it, in conjunction with the ADOS, are considered the ‘gold standard’)18 there are 4 items that are crucial to the diagnostic algorithm, and they differentiate males and females.16 The endorsement that the item is an ‘issue’ for the individual loads toward identification of autism, however, these four items are insensitive to females without intellectual disability,19 and that is where we get the discrepancies in autism between males/females and females with/without intellectual disability (dotted line).

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The ADOS, too, has challenges when it comes to identifying females as it relies on observation.  As most autistic females are adept at masking, the ADOS is insensitive to identifying females.16 20

 

Obstacles to female diagnoses

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Bias in diagnostic criteria/diagnostic tools

 

Most of what we know about autistic females has been gathered from females who have met the male phenotype for autism,21 in other words, females who have been diagnosed using the existing classification system and subsequent diagnostic tools, which we know have a male bias.15

Hartung and Widiger 8 warned of sampling bias as well when one gender dominates a specific condition. Sampling bias does exist. In a meta-analysis of 392 articles on autism, 80% of the study participants were male.22

 

Obstacles to female diagnoses

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Bias in diagnostic criteria/diagnostic tools

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Biased sampling in research

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Clinicians and educators are looking for males in the belief that autism is a male condition. Males generally present with more overt autistic traits. 23, 24, 25, 26, 27, 28 As males tend to be externalizers; they may present as more disruptive in a school environment.21 Females may be less likely to have externalizing behaviours (hyperactivity/impulsivity and conduct problems), and instead are more likely to have internalizing problems like anxiety, depression and eating disorders.29, 30

“If the expression of symptoms of a disorder differ by gender, the development of diagnostic criteria will be biased toward the gender that externalizes psychic distress and exhibits socially unacceptable behavior 8

 

Teachers may fail to recognize ‘autistic females’ too. They have fewer concerns about the behavior of girls30 and even when clinicians recognize social/communication deficits, teachers fail to recognize this.21 For example, in a study of playground behaviour, Dean and colleagues31 found that autistic boys were more likely to stand out as ‘loners’ among their peers. Girls, however, may bounce from social group to social group and flit about like the proverbial social butterfly which, to the onlooker, makes them appear to be socially confident and competent, when in fact they may be shifting groups because of rejection. 

 

 

Obstacles to female diagnoses

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Bias in diagnostic criteria/diagnostic tools

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Biased sampling in research

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Belief that it’s a ‘male condition’

 

 

Autistic traits: quantity/severity and type

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Repetitive and restricted behaviours and interests (RRBIs)

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Much is made of RRBIs. They are included in the DSM classification system.21 They are an integral component of diagnostic tools.16, 17 Many people think of RRBIs as THE indicator of autism, and females have RRBIs, but they have fewer RRBIs than males34, 35, 36, 37, 38 and their special interests are not that SPECIAL. 

Females have circumscribed interests, even intense interests, but they do not differ SO greatly from their neurotypical peers.39 Ponies, boy bands, animals, fashion, makeup, nail polish can all be transfixing for the autistic female, but as a focused interest they do not make her stand out as appreciably odd.Furthermore, females engage in fewer rituals than males, and take less interest in ‘part of objects’ (e.g., spinning wheels on a toy car).14This poses a problem for securing a diagnosis because the DSM and diagnostic tools all emphasize RRBIs; and males may be more likely to endorse this distinction in dramatic fashion while females may not.

Camouflage, masking, adaptive morphing

“Is the discrepancy between the person’s ‘external’ behavioural presentation in social–interpersonal contexts and the person’s ‘internal’ status (i.e., dispositional traits and/or social cognitive capability).” 40

 

Camouflaging, masking, or adaptive morphing are when a person acts in a way that they believe people want them to be. It can include, for example matching voice, accents, adopting a hairstyle, a gait, a style. It can be making eye contact, even though it causes discomfort, or controlling self-stims when in unaccepting company. This can also include rehearsing before an event; self-reminders to sit up straight, to not pick at teeth or twirl hair, or the practicing of filler statements. Much effort goes into this behaviour.  They observe, and analyze, then they adopt that which they believe to be acceptable to society. img8

How have we contributed to masking? How do we reinforce masking behaviours?

Camouflaging is experienced as an obligation rather than a choice.40

Autistic females are more likely than males to camouflage; 90% of females have engaged in camouflaging42, 41 This behaviour reduces the observability of autistic traits, which may make it harder to identify autism in female-presenting people.43, 44, 30

Some autistic people credit camouflaging for their social and vocational successes, as they experience less stigma and marginalization in these spaces when their autistic traits are less pronounced. Unfortunately, camouflaging is seriously exhausting and can take a serious toll on mental health with depression and anxiety, to the point where masking is a risk marker for suicidality. 43, 42 Camouflaging can prevent or seriously delay an autism diagnosis, further reinforcing the gender differences in diagnosis. 

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Obstacles to female diagnoses

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Bias in diagnostic criteria/diagnostic tools

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Biased sampling in research

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Belief that it’s a ‘male condition’

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Stigma and marginalization can lead to camouflaging autistic traits

 

When another condition is SO OBSERVABLE, the ASC may be less salient,
For example, in the case of eating disorders

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Autism and Eating Disorders

Autistic females may also be present in higher numbers than recognized in eating disorder (ED) clinics. Many females who receive treatment for an ED also present with autistic characteristics.45 Their ED may be their most conspicuous area of need insofar as it threatens their physical wellbeing. In the presence of a potentially debilitating physical condition, autistic traits may be overlooked or may not be prioritized for identification. Females with ED in the Babb et al. study45 who also had autistic traits tended to be erroneously labeled ‘resistant’ and ‘naughty’; many of these women knew their symptoms were not associated with the ED. 

There is a significant overlap between autism and eating disorders (ED).
29, 46, 47 For example, the prevalence of ASC in persons diagnosed with anorexia nervosa is 30%.48 Clinic patients with both anorexia nervosa and ASC fail to respond to treatment like those who are not comorbid for ASC. Those with ASC have worse adaptive functioning, and they require more intensive and longer treatment regimens.49 It is therefore critical to make the distinction between those with and without ASC to provide the most appropriate intervention regimen.

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“When I was in hospital, I kept getting told off for walking on tip toes and for fidgeting a lot…they thought I was doing these things to burn more calories, except I’d been doing them for as long as I could remember” 45(AW09-ED but pre-ASC)

 

“For example, she would want to put a pea on each of the prongs of the fork, but [staff] said ‘oh no you can’t be doing that, you shouldn’t be doing that’ and corrected her when she was doing it, because they thought it was being driven by the eating disorder.” 45 (HCP03 regarding patient with ED but pre-ASC)

 

 

Obstacles to female diagnoses

check

Bias in diagnostic criteria/diagnostic tools

check

Biased sampling in research

check

Belief that it’s a ‘male condition’

check

Stigma and marginalization can lead to camouflaging autistic traits

check

An ED may be disguising their ASC

 

When another condition is SO OBSERVABLE, the ASC may be less salient,

For example, in the case of sexual and gender minorities (SGM)

Autism and SGM

  • SAB – sex assigned at birth
  • AFAB – assigned female at birth
  • AMAB – assigned male at birth
  • Gender identity – one’s concept of self
  • Gender diverse – all who do not identify with SAB
  • Gender minority – when gender identity does not match sex assigned at birth
  • Sexual orientation – one’s romantic/sexual attraction
  • SGM – sexual and gender minority

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Autistics are more likely than neurotypicals to be gender diverse, and gender diverse folks are more likely to be autistic than are cisgender people50, 51

 

In gender diverse children, the rate of ASC is approximately 37 times higher than would be expected in the general population.52, 53, 54 Levels of autistic traits and ASC were higher for AFAB than AMAB54, 55 In addition, ASCs are far higher in the transgender group than in the general population; 22.5% of transgender adolescents and adults had a diagnosis of autism.50

When autistics are assessed for SGM status, 15% identified as gender diverse (percentage higher for AFAB) in comparison to fewer than 5% of the general population identifying as gender diverse.56 Rates of transgender identity in autistics is 20 to 40 times higher than population estimates.57 Perhaps the transgender presentation disguises the autism. When a parent has a teenager who discloses or acts upon their identity as differing from the sex which was assigned at birth, THAT will probably garner the parent’s attention far more than the fact that the child is struggling socially. Furthermore, they would have a ‘perfect’ excuse for why they are struggling socially; the salient presentation will be thought to be responsible.

Just as eating disorders clinics may open the door to the identification of female autistics, so may gender identity clinics.


Sexual orientation plays a role in identifying ‘would be autistics’ as well. Only 30% of autistics claimed to be heterosexual in comparison to 70% of neurotypicals.
56 Autistic females present with greater diversity in their sexuality than either their male autistic counterparts or neurotypical female peers; they are less likely to be heterosexual than either group.58 Hence, the most salient, or noticeable presentation of a pre-adolescent, for example, may be an unexpected sexual orientation.

To date there has been no speculation regarding the appropriateness of applying that which are thought to be ‘female characteristics’ of autism, to men, gay men specifically, but let me be the first.

When presenting a ‘female autism identification’ talk at ASHA (American Speech and Hearing Association) in Boston in 2018, a gay man in the audience found the ‘female characteristics’ applied to him completely; whereas, he had dismissed the characteristics of the male autistic phenotype as found he did not resonate to them. 
Personal experience – Glenis Benson, PhD

 

Do we need a continuum of autistic characteristics to find applicability across all, regardless of gender?

 

 

Obstacles to female diagnoses

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Bias in diagnostic criteria/diagnostic tools

check

Biased sampling in research

check

Belief that it’s a ‘male condition’

check

Stigma and marginalization can lead to camouflaging autistic traits

check

An ED may be disguising their ASC

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Gender diversity, and sexual orientation may be disguising their ASC

 

Social and communication abilities

Females with ASC demonstrate relative strengths in socio-communicative abilities compared to males with ASC.60 They are better than males at non-verbal communication strategies and gestural use,36 and better at reciprocal conversations.21 Females are simply more socially motivated and have a greater capacity for traditional friendships.59, 60 When you add their ability to imitate, to camouflage and to mimic, to their increased motivation for social interaction, the presentation proves to be a great disguise for their autistic traits. They can hide in plain sight; they do not stand out socially to the same degree as their male counterparts because they can fake it so well. By adolescence, camouflaging and overexerting oneself socially can become mentally and emotionally exhausting, and it can impact other areas of life including mental health and functioning.61

Girls are ambiguous in their presentation. They are not as noticeable as clinicians would expect for ‘typical’ ASC impairment.21

 

 

Obstacles to female diagnoses

check

Bias in diagnostic criteria/diagnostic tools

check

Biased sampling in research

check

Belief that it’s a ‘male condition’

check

Stigma and marginalization can lead to camouflaging autistic traits

check

An ED may be disguising their ASC

check

Gender diversity, and sexual orientation may be disguising their ASC

check

Social communication skills, though superficial, allow them to fly under the radar


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The cost of misidentification, late identification, and no identification

Given brain plasticity, the earlier intervention occurs, the better.37 It is not as though these females avoid life struggles; they endure relationship as well as academic struggles in addition to the internalized problems of anxiety and depression, among others.43, 62, 42 They are misidentified, over-medicated63 and many are hospitalized for eating disorders.47 They experience both burnout and exhaustion; camouflaging is exhausting.43, 42 Given the adoption of an alternate identity, they are left questioning what about them is authentic and what is the mask.64 Because they have learned to socialize superficially, they do not accurately read non-verbal or subtle verbal signals making them vulnerable to sexual exploitation and abuse.43 In addition, autistic females are 13 times more likely to die by suicide than non-autistics.65, 66 These females are being failed by the system. By not being accurately diagnosed they do not receive autism-specific intervention or supports that could enhance their well-being and quality of life. We need to do better.

Autistic females have been overlooked not just by society but by science 67

 

Next Steps

 


Professional development for health care professionals as well as educators is critical. They all need to be trained on the various presentations of autism, including the intersection of gender and age43, 68, 5

 

Clinics need to be broad in their scope. Child development clinics need to be sensitive to the potential for ASC across all genders, inclusive of those who present diversely. Eating Disorders Clinics and Gender Diversity Clinics need to be sensitized to the potential for ASC in those presenting with both ED and SGM, respectively.

  

Diagnostic methods need to be revamped and adjusted. Observational methods are contraindicated with the prevalence of masking.69 It is imperative to employ diagnostic tools and questionnaires that accurately measure traits in females as well as non-binary individuals.70

 

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Some instruments that can be of assistance are:

Q-ASC (Questionnaire for ASC)71

CAT-Q (Camouflaging Autistic Traits Questionnaire72

GABS (Gendered Autism Behavioral Scale)73

ASSQ-Rev (Autism Spectrum Screening Questionnaire74

    

Researchers need to be actively recruiting females and other non-cis-male study participants.40 These researchers can also seek guidance from adult female autistics on how to recruit more study participants who are female, trans, gender diverse, and non-binary.67

     

Autism; it’s not just for males anymore.

References

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