In autistic persons, there is a lack of emotional reaction to the friendly approach of other people, whether verbal or non-verbal; the intonation modulation is disrupted, and there is insufficient employment of gestures to emphasize the spoken communication. (Autistické Centrum Andreas n.o. n.d.)
This quotation is part of a description of autistic[1] traits that should guide diagnosis by one of the most prominent diagnostic centers for autism in Slovakia. Here, they also mention that males are affected three to four times as much as females. We can find similar representations and statistics presented on most Slovak professional and journalistic websites dealing with autism.[2] However, research in the last decade shows that autism can have different outward manifestations, especially in females without intellectual disabilities. Camouflaging one’s autistic traits, higher sociability, and more socially acceptable special interests that are typical for female autism can make it hard to detect (Lai et al. 2011, Kirkovski, Enticott, and Fitzgerald 2013, Moyse and Porter 2015, Bargiela, Steward, and Mandy 2016, Lawson 2017, Hull, Petrides, and Mandy 2020, Brown et al. 2020). I would like to argue that the researchers and medical practitioners in Slovakia need to get acquainted with the new research on the presentation of autism in females and change their diagnostic methods because: (1) the methods that they currently use do not reflect the difficulties that autistic traits prevalent in females present, (2) lack of awareness concerning their diagnosis lowers the quality of life of autistic women and makes it hard for them to receive adequate support.
The current diagnostic methods do not consider the research on how autism can manifest itself in women and the problems it poses. According to Hull et al. (2017), camouflaging is a coping mechanism that autistic people use to hide their autistic traits to not to stand out and discourage others from contact.[3] It can be a conscious decision or something that they do automatically. In their review of literature on the female autism phenotype, Hull et al. (2020) identify two approaches helpful with counteracting masking. First, the discrepancy approach focuses on “camouflaging as evidenced by the discrepancy between an individual’s innate autistic characteristics and their external presentation of autism” (p. 311). Here, the diagnosticians compare the self- and/or parent-reported internal characteristics with external characteristics, which they measure with conventional diagnostic methods, such as ADOS-2 (Autism Diagnostic Observation Schedule, 2nd Edition). Second, the observational/reflective approach uses “direct identification of camouflaging behaviors through observation and reflection by autistic individuals or others around them” (p. 312). So far, two notable questionnaires have been created to support this approach – GQ-ASC (2011) and CAT-Q (2018).[4]
However, it seems that Slovak healthcare professionals utilize none of this knowledge or methods. For example, speech therapists are often the ones who recommend parents and their children to pursue a diagnosis. Nevertheless, in a conversation with a speech therapist, I found out that she had no idea about the possible variations of autism in girls and that in her assessment, she relies on a four-page document from 1999 (personal communication, March 26, 2021). Additionally, I have managed to find websites of 13 diagnostic centers in Slovakia. Seven of them mentioned the diagnostic methods they employ – either ADOS, ADOS-2, ADI-R, or M-CHAT. All of these questionnaires were concerned only with the external presentation of autism and could not detect camouflaging. Two of them described the diagnostic process in detail without mentioning the method, and neither of them considered camouflaging. The remaining four offered no information. Moreover, the only training courses that The Academic Center for Research of Autism (Akademické centrum výskumu autizmu o. z.) offers are for ADOS. In contrast, searching for CAT-Q or Q-ASC questionnaires in the Slovak language yields only three results – all from machine-translated foreign websites. In short, Slovak medical practitioners seem to be overlooking the traits that can make it hard to identify autism in females.
This inattention is problematic because undiagnosed autistic women can have a significantly lower quality of life. Without any explanation about their otherness, the inability to naturally follow the ‘normal’ social roles and expectations often leads to internalization of their inadequacy, giving rise to low self-esteem and self-blame (Kanfiszer, Davies, and Collins 2017). Self-blame can appear even in extreme cases, such as bullying or sexual assault (Bargiela et al. 2016, Kanfiszer et al. 2017). Experience with sexual assault is pervasive with women on the spectrum. Difficulty with reading social cues, maladaptive copying of possibly flirtatious behavior, insecurity about breaching social rules (saying no), lack of female peers from whom to learn skills needed to handle such advances, or isolation and loneliness that leave them craving for acceptance, all put autistic women at greater risk of sexual abuse (Kanfiszer et al. 2017, Bargelia et al. 2017, Cridland et al. 2014). Furthermore, Hull et al. (2017) write that camouflaging can also endanger one’s sense of identity and cause guilt from ‘deceiving’ others. Through camouflaging, women also perpetuate the stereotypes of what it means to be autistic, which can complicate their situation if they decide to pursue a diagnosis. Lastly, the exhaustion caused by the constant masking of their autistic traits, coupled with loneliness from lacking real connections, may prompt depression, anxiety disorder, or suicidal thoughts (Hull et al. 2017, Kanfiszer et al. 2017). This fact may be particularly important as Hudson, Hall, and Harkness (2019) show that even diagnosed individuals are four times more likely to experience depression during their lifetime. Receiving a diagnosis could at least partially mitigate these problems as it can provide explanations for the individual and access to appropriate support, promoting better preparedness.
In conclusion, it is crucial for autistic women without intellectual disabilities that researchers, diagnostic centers, psychiatrists, psychologists, speech therapists, and general practitioners become acquainted with the characteristics of female autism and use adequate diagnostic tools. Although camouflaging, in particular, presents a significant hurdle in recognizing female autism, medical practitioners can overcome it by choosing appropriate diagnostic methods such as the CAT-Q questionnaire. While this is just one step towards creating an autism-friendly world, receiving a diagnosis could help autistic women to better understand their experiences and their environment and to develop skills to overcome the difficulties they face.
Valentína Straková is a Master’s degree student of Sociology
This post was written in conjunction with the master’s sociology course “Writing Sociology,” at the Faculty of Social Studies of Masaryk University, taught by B. Nadya Jaworsky.
[1] For simplicity, I use the term ‘autism’ to denote ‘Autism Spectrum Conditions’. As Hull et al. (2017) paraphrase the American Psychological Association’s (2013) definition: “Autism Spectrum Conditions are atypical developmental conditions characterized by impairments in social interaction and communication, alongside unusually restricted/repetitive behaviors and interests, need for sameness, and atypical sensory processing” (p. 2519).
[2] Noteworthy are also the repeated interview statements of professor Daniela Ostatníková – Slovakia’s foremost autism researcher– that autistic persons are incapable of empathy (for example, Bartošovičová 2016, Hečková 2019, Bednár 2020). For a discussion on how misleading and damaging such statements can be, see Rieffe et al. (2020) or Fletcher-Watson and Bird (2019).
[3] While camouflaging is usually discussed in connection with female autism, Hull et al. (2017) show that it is omnipresent in the experience of autistic persons, regardless of gender. At the same time, their research suggests that females are more successful in it.
[4] CAT-Q is freely accessible on https://embraceasd.com/cat-q/.
References
Autistické Centrum Andreas n.o. N.d. “What is autism? [Čo je autizmus?]” Bratislava: Autistické centrum Andreas n.o. Retrieved March 21, 2021 (https://andreas.sk/index.php?www=autizmus).
Bargiela, Sarah, Robyn Steward, a William Mandy. 2016. “The Experiences of Late-Diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype”. Journal of Autism and Developmental Disorders 46(10):3281–94. doi: 10.1007/s10803-016-2872-8.
Bartošovičová, Marta. 2016. “Interview with professor Daniela Ostatníková on the occasion of World Autism Awareness Day [Rozhovor s prof. Danielou Ostatníkovou pri príležitosti Svetového dňa povedomia o autizme].” VEDA NA DOSAH. Retrieved March 26, 2021 (https://vedanadosah.cvtisr.sk/zdravie/rozhovor-s-prof-danielou-ostatnikovou-pri-prilezitosti-svetoveho-dna-povedomia-o-autizme/).
Bednár, Jozef. 2020. “Accepting your child’s autism is important, but it is also tends to hurt [Prijatie autizmu svojho dieťaťa je dôležité, ale zvykne aj bolieť].” Denník N. Retrieved March 26, 2021 (https://dennikn.sk/1727029/prijatie-autizmu-svojho-dietata-je-dolezite-ale-zvykne-aj-boliet/).
Brown, Claire M., Tony Attwood, Michelle Garnett, and Mark A. Stokes. 2020. “Am I Autistic? Utility of the Girls Questionnaire for Autism Spectrum Condition as an Autism Assessment in Adult Women.” Autism in Adulthood 2(3):216–26. doi: 10.1089/aut.2019.0054.
Cridland, Elizabeth K., Sandra C. Jones, Peter Caputi, and Christopher A. Magee. 2014. “Being a Girl in a Boys’ World: Investigating the Experiences of Girls with Autism Spectrum Disorders During Adolescence.” Journal of Autism and Developmental Disorders 44(6):1261–74. doi: 10.1007/s10803-013-1985-6.
Fletcher-Watson, Sue, and Geoffrey Bird. 2019. “Autism and Empathy: What Are the Real Links?” Autism 24(1):3–6. doi: 10.1177/1362361319883506.
Hečková, Ivana. 2019. “The Jobses among us: geniuses with the ‘diagnosis’ increasing; they are scoring points in both the labor and marriage larkets [Jobsovia medzi nami: pribúda géniov s „diagnózou“, bodujú na pracovnom aj sobášnom trhu].” Aktuality.sk. Retrieved March 26, 2021 (https://www.aktuality.sk/clanok/672281/rastie-pocet-geniov-s-autizmom-ma-zmysel-snazit-sa-ich-zaradit-do-pausalnych-kolaji/).
Hudson, Chloe C., Layla Hall, and Kate L. Harkness. 2019. “Prevalence of Depressive Disorders in Individuals with Autism Spectrum Disorder: A Meta-Analysis.” Journal of Abnormal Child Psychology 47(1):165–75. doi: 10.1007/s10802-018-0402-1.
Hull, Laura, K. V. Petrides, Carrie Allison, Paula Smith, Simon Baron-Cohen, Meng-Chuan Lai, and William Mandy. 2017. “‘Putting on My Best Normal’: Social Camouflaging in Adults with Autism Spectrum Conditions.” Journal of Autism and Developmental Disorders 47(8):2519–34. doi: 10.1007/s10803-017-3166-5.
Hull, Laura, K. V. Petrides, and William Mandy. 2020. “The Female Autism Phenotype and Camouflaging: A Narrative Review.” Review Journal of Autism and Developmental Disorders 7(4):306–17. doi: 10.1007/s40489-020-00197-9.
Kanfiszer, Lucie, Fran Davies, a Suzanne Collins. 2017. “‘I Was Just so Different’: The Experiences of Women Diagnosed with an Autism Spectrum Disorder in Adulthood in Relation to Gender and Social Relationships.” Autism 21(6):661–69. doi: 10.1177/1362361316687987.
Kirkovski, Melissa, Peter Enticott, and Paul Fitzgerald. 2013. “A Review of the Role of Female Gender in Autism Spectrum Disorders.” Journal of Autism and Developmental Disorders 43. doi: 10.1007/s10803-013-1811-1.
Lai, Meng-Chuan, Michael V. Lombardo, Greg Pasco, Amber N. V. Ruigrok, Sally J. Wheelwright, Susan A. Sadek, Bhismadev Chakrabarti, Mrc Aims Consortium, and Simon Baron-Cohen. 2011. “A Behavioral Comparison of Male and Female Adults with High Functioning Autism Spectrum Conditions.” PLOS ONE 6(6):e20835. doi: 10.1371/journal.pone.0020835.
Lawson, Wenn. 2017. “Women & Girls on the Autism Spectrum: A Profile.” Journal of Intellectual Disability – Diagnosis and Treatment 5:90–95. doi: 10.6000/2292-2598.2017.05.03.4.
Moyse, Ruth, and Jill Porter. 2015. “The Experience of the Hidden Curriculum for Autistic Girls at Mainstream Primary Schools.” European Journal of Special Needs Education 30. doi: 10.1080/08856257.2014.986915.
Rieffe, Carolien, Rachel O’Connor, Anne Bülow, Danique Willems, Laura Hull, Felicity Sedgewick, Lex Stockmann, and Els Blijd-Hoogewys. 2020. “Quantity and Quality of Empathic Responding by Autistic and Non-Autistic Adolescent Girls and Boys.” Autism 25(1):199–209. doi: 10.1177/1362361320956422.
Analyzed websites of diagnostic centers
ACVA LFUK. n.d. “Diagnostika a výskum.” Retrieved March 27, 2021 (https://www.fmed.uniba.sk/pracoviska/teoreticke-ustavy/fyziologicky-ustav-lf-uk/acva-akademicke-centrum-vyskumu-autizmu/diagnostika-a-vyskum/). Using ADOS and ADI-R.
ADEPT s.r.o. n.d. “Video: Diskusia na tému zdravie – Autizmus u detí.” Retrieved March 27, 2021 (https://adeptzilina.sk/). Detailed description about what they ask during the diagnosis in video.
Autistické centrum Andreas n.o. n.d. “Čo je Autizmus.” Retrieved March 27, 2021 (https://andreas.sk/index.php?www=autizmus). Description of diagnostic considerations.
CDD, s.r.o. 2020. “Diagnostika.” Retrieved March 27, 2021 (https://cdd.sk/diagnostika/). No information.
Centrum pre rodinu Kvapka. n.d. “Cenník služieb CPR Kvapka.” Retrieved March 27, 2021 (https://dietaaja.sk/cennik-sluzieb-cpr-kvapka/). Using ADOS-2.
Diagnostické centrum pre deti v Bratislave. n.d. “Kto sme?” Retrieved March 27, 2021 (https://www.dcpredeti.sk/n_kto.php). No information.
DSS Profesora Karola Matulaya. n.d. “Prednáška: Epilepsia a autizmus.” Retrieved March 27, 2021 (https://www.dsspkm.sk). No official information. (Although in a lecture on epilepsy and autism that the center organized on October 2, 2020, their guest mentioned M-CHAT and ADOS as the main diagnostic tools.)
Early Start Bratislava. n.d. “Čo robíme?” Retrieved March 27, 2021 (http://esba.sk/). Using ADOS-2 and ADI-R.
F84, o.z. n.d. “F84.Sk.” Retrieved March 28, 2021 (http://f84.sk/). Using ADOS and ADI-R (from requirements for a job offer).
PSYCH-CENTRUM. n.d. “Cenník – Diagnostika Autizmu.” Retrieved March 27, 2021 (https://diagnostikaautizmu.sk/cennik/). Using ADOS.
Lazíková, Alžbeta. n.d. “O mne :: Psychológ SILOE.” Mgr. Alžbeta Lazíková – SILOE. Retrieved April 6, 2021 (https://www.psychologsiloe.sk/o-mne/). Trained in ADOS-2.
Súkromné centrum špeciálno-pedagogického poradenstva Poltár. n.d. “Diagnostika Autizmu.” Retrieved March 27, 2021 (https://www.centrumpoltar.eu/index.php/features/diagnostika/diagnostika-autizmu). No information.
T-PSYCHOS s.r.o. n.d. “Diagnostika autizmu (PAS).” Retrieved March 28, 2021 (https://www.zuzanasinay.sk/diagnostika-autizmu-pas/). Using ADOS-2.