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Where have all the girls gone? Missed, Misunderstood or Misdiagnosed?

Professor Amanda Kirby, CEO of Do-IT Solutions

Leading into International Women’s day #IWD2020 on the 8th March, it is important for us to consider why there are more girls and women coming forward being diagnosed with Neurodivergent conditions than in the past.

The term neurodiversity recognises diverse and varying brains. However, the term is one that is becoming associated with a number of traits and characteristics associated in some people with Dyslexia, Dyscalculia, Attention Deficit Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), Developmental Coordination Disorder/Dyspraxia and Developmental Language Disorder. Neurominority, is another term referring to this specific group which has recently been coined by the Australian sociologist Judy Singer.

While increasing awareness of this concept means there are a number of females self-diagnosing in adulthood with a range of conditions there are many girls and females who haven’t had their support needs recognized and continue to have challenges in day-to-day life. For some arriving at adulthood can mean having many years of constant feelings of anxiety and for many being depressed. Their diagnosis has been missed all together.

Past challenges can have been difficulties progressing in education and socially, and including experiences of not quite fitting in. I have had many females feel both relieved and also angry at gaining a diagnosis in adulthood. Some of those females are frustrated at not achieving their potential. Sadly, some end up with lower level qualifications or none despite having potential skills. Even sadder are some females who end up in the justice system having been misunderstood.

Are girls so different from boys?

Until relatively recently there was an accepted belief and evidently also confusion in some camps that there are big differences in the way men and women’s brains work that result in some behaviours and traits in men and very different ones in women. This categorical approach provided a somewhat limited view of the world retaining the dichotomy that ‘blue is for boys and pink for girls’ and that the divide was a clean one.

A recent article in the Telegraph sadly reiterating to some extent this view. By reiterating differences in this way, we perpetuate the view of educational limitations by gender. The article resulted in a barrage of criticism from successful female scientists and those working across STEM subjects on the content and angle of the article.

In contrast to this, was Eliot’s article in February 2019 outlining the reasons that an over simplistic approach to gender differences lacks scientific rigour. She also discussed the excellent book by Rippon called ‘The Gendered Brain: The new neuroscience that shatters the myth of the female brain’ that provides a lot of the scientific arguments why there is bias and fault in our past suppositions.

More recently, an All-Party Parliamentary Group (APPG) report “Inclusivity and Intersectionality” considers the intersection of inclusivity and gender and mentions specifically and interestingly the intersections of neurodiversity and gender.

What is intersectionality?

It is the interconnected nature of social categorizations such as race, class, and gender as they apply to a given individual or group, regarded as creating overlapping and interdependent systems of discrimination or disadvantage. As a theory it was coined by the academic Kimberlé Crenshaw. It is the study of how overlapping social identity categories, particularly minorities relate to systems and structures of power and discrimination. It exemplifies the challenge of categorisation by race, gender, religion, sexuality for example… or a specific neurodiverse condition.

By considering intersectionality we also start to think about the potential impact of cumulative adversity i.e. if you are someone who ticks more than one box and are a minority in more than one area is the impact for you greater in terms of accessing support?

So why have fewer girls been diagnosed with Neurodivergent conditions?

In the last few years there has been increasing interest of potential under-diagnosis of females and the reasons for this. The diagnosis of neurodevelopmental conditions remains far greater in males than females. For example, males are diagnosed with Autism Spectrum Disorder (ASD) approximately four times as often as females. Until recently it had been accepted as a fact rather than considering that the research or diagnostic pathways could have had some biases.

Alongside this interest is the beginning of an understanding of the potential negative consequences for females whose needs are unmet. As Fulton et al (2017) describe the lack of identification can result in “developmental cascades whereby cumulative effects are seen across a variety of domains and systems as a consequence of under-identification” and can potentially result in lowered educational attainment and reduced employment opportunities.”

Why may some girls be missed, misunderstood or been misdiagnosed?

Study and diagnostic criteria biases

Females with Autism Spectrum Disorder for example have historically been virtually absent from studies investigating ASD (Constantino & Charman, 2012; Fountain, King, & Bearman, 2011). Diagnostic criteria for ASD have been developed almost entirely using the male behavioural and symptomatic presentation of ASD (Goldman, 2013). Some of the instruments or specific items used to diagnose ASD may have a male bias (Adamou, Johnson and Alty, 2018).

Current diagnostic criteria for ADHD have also been developed in predominantly male samples, so that many diagnostic instruments may not generalise to females (Nussbaum, 2012).

Hidden in full view

Hull et al (2017) discuss how some people who identify as autistic (on the Autism Spectrum) use techniques to appear socially competent and find ways to prevent others from seeing their social difficulties. This has been called ‘camouflaging’. While we can all ‘put on a front’ in a novel social situation, people with autism talk about the enormous effort of doing so and the impact on their mood and energy levels. Females are less likely to receive a diagnosis than males with similar levels of autistic traits .Also those who manage to get a diagnosis are more likely than males to be older and have more additional needs and behavioural-emotional challenges (Duvekot et al. 2016). Importantly, females may have been previously misdiagnosed with other mental health conditions, such as personality disorders or eating disorders (Lai and Baron-Cohen 2015) so turning up in psychiatric services where the professionals may have less training in screening for neurodiverse traits.

Ascertainment and referral biases

One view considers gender differences to reflect a methodological artifact arising from ascertainment bias. Ascertainment bias refers to males being more likely to be referred for evaluation than females with equivalent challenges. For example, more boys could end up being referred with reading problems is they openly express frustration and exhibit disruptive behavior in the classroom.

A recent article from Uppsala (Ghosh et al, 2019) identified bias in reporting of ADHD characteristics by gender. That is the male participants in the study reported ADHD characteristics more in boys more accurately, and female adults reported girls with ADHD more accurately. Interestingly, women have been shown to be better at determining a character’s behavior, if the vignette character is female (Wacker et al, 2017).

We know that presentation results in different responses by professionals. As a result of this females may have less opportunity to gain a referral for a diagnosis. For example, males demonstrate more externalising behaviours (Kreiser and White., 2014), which may be one reason for gaining the attention of health professionals or therapists. Females may also be missed because of the ‘type’ of ADHD that they have which is a predominantly inattentive ADHD (dreamy type).The symptoms of inattentive ADHD are also much less disruptive than those of hyperactive/ impulsive ADHD(APA, 2013). A study of primary school teachers found that they frequently did not identify the inattentive ADHD type and were not aware that medication could be helpful in this context (Moldavsky et al, 2014).

This bias is also seen in other conditions including Developmental Co-ordination Disorder (also known as Dyspraxia). One survey of elementary school teachers showed that they were more likely to report concerns about the gross motor skills performance of boys than the fine motor performance of girls and also considered it more important to intervene with the children with gross motor problems (Rivard et al., 2007).

Access to specialist services

Females with ASD/ADHD/DCD often experience difficulties obtaining diagnosis, and therefore appropriate treatment and services. This delay is frequently reported to negatively impact on areas of life and development. This may be because of lack of understanding, awareness and knowledge of female presentations/traits associated with different conditions.

Impact of ‘missing’ the girls

If we don’t appropriately diagnose and support neurodivergent females the impact can be seen on educational and employment outcomes.ADHD for example, in girls is associated with lower educational achievement, unplanned pregnancy, mental health conditions and self-harm (Owens et al, 2017). Thus, girls with ADHD are at risk of long-term cumulative adversity.

Intervention for ‘inattentive ADHD’ has also been demonstrated to reduce symptoms and improve social and organisational skills (Pfiffner et al, 2007). This may prevent or reduce some of the negative outcomes associated with ‘inattentive ADHD’. However, unless girls are identified (and identified early) this can’t happen. Teacher training is essential for this to occur and ensuring there is not a gender bias in terms of identification.

Where else do girls go?

Psychiatric services or hidden in full view

Women and men are presented with unique and different social constraints at every level of social organization, and these constraints contribute to gender differences in resources, social roles, and stress exposure and resulting behavioural presentation of distress. However it may be that females are ending up diverted to psychiatric services. It has been recognized that anxiety and depression are more common among women, and behavioral disorders like substance abuse and antisocial personality are generally more common among men. But it may important to reflect what  Dohrenwend and Dohrenwend (1976: 1453): said in 1976 that “… we should discard undifferentiated, unidimensional concepts of psychiatric disorder and with them false questions about whether women or men are more prone to ‘mental illness’.” We need to be careful to equate externalizing behaviours in men as the equivalent of anxiety and depression in women and not see these has biases that remain.

Some females end up in prison

Less than five per cent of this country’s prison population is female, and the trend is similar elsewhere in the western world. However, when you explore the level of neurodiverse traits in the prison population it appears to be highly prevalent among females in prison, although comparatively few studies have been carried out.

In one study at Newhall Secure Female Prison, Yorkshire 59.4% of a sample of 69 women in met diagnostic criteria for adult ADHD when screened (Farooq et al., 2016). Females in prison also have lower literacy and numeracy levels than the general population, some of which may well be attributable to Dyslexia and Dyscalculia. For example, 47% of women entering prison in England in 2014/15 did not have Level 1 literacy skills and 77% did not have Level 1 numeracy skills (Creese, 2015). These are skills levels expected of typically developing 11-year-old children. Misattribution may continue to result in lack of recognition of the learning and communication challenges many of these women may have.

So why do some neurodivergent women end up in the justice sector?

Factors most commonly thought to contribute to crime i.e. a lack of education (half of people in prisons have no qualifications, compared with 15 per cent of the general population); experiences of violence or abuse as a child, and differences in opportunities. Women face discrimination “in both the legitimate and illegitimate worlds,”. The world of organised crime tends to be predominantly male-dominated, operating on strictly traditional gender roles where women tend to take domestic, sexual or care-giving roles rather than being directly involved in the gang’s operations. Those with neurodiverse traits may be even more susceptible.

Multiple adversities may reduce detection rates

We don’t know a lot about the prevalence of Neurodiversity in Looked After Children but what we do know is that it is higher than in the general population. We can only surmise that if females are moving around an educational and social system where there is little knowledge relating to neurodiversity in general, and what is known are more male stereotypes then they are even less likely to have their neurodiverse traits recognized than males.

There may also be diagnostic overshadowing with over diagnosis of mental health challenges or assumptions made that some difficulties are related to attachment disorder because they are LACYP.

Conclusions

There is no doubt we have missed girls who have neurodiverse traits. We are only starting to understand what it feels like by understanding a wide range of female lived experiences and explore the specific challenges. In the next few years we will certainly see screening tools being developed that have less gender biases so we can provide improved early identification and provide appropriate targeted support.

While we work together to improve services ,we need to ensure greater awareness at all levels including educators in further and higher education, those working in alternative provision, in social services, in employment and in the justice sector to help enable neurodivergent females to showcase their strengths and talents and not have their challenges misunderstood. We need to ensure that support is delivered in a timely manner so that fewer females arrive in adulthood are missed, misunderstood or misdiagnosed.

Professor Amanda Kirby, CEO of Do-IT Solutions

Professor Amanda Kirby is a Professor in developmental disorders in education at University of South Wales and CEO of Do-IT Solutions (www.doitprofiler.com) . Do-IT Solutions has developed innovative web- based screening tools that screen for neurodiverse traits and provide personalized guidance in the context of the age and setting for each individual.

Do-IT Solutions , led by the author of this article and colleagues at ACT Training in Cardiff have organized a conference on 3rd March with leading speakers from research, education and employment along with those with important lived experiences to discuss neurodiversity and females. This includes Professor Barry Carpenter and Professor Francesca Happe co-authors of “Girls and Autism: Educational, Family and Personal Perspectives” and Dr Nancy Doyle, CEO of Genius Within.

References:

Adamou, M., Johnson, M. and Alty, B. (2018) ‘Autism Diagnostic Observation Schedule (ADOS) scores in males and females diagnosed with Autism: a naturalistic study’, Advances in Autism, 4(2), pp. 49–55. doi: 10.1108/AIA-01-2018-0003.

American Psychiatric Association (2013) Diagnostic and statistical manual of mental disorders (5th edition). American Psychiatric Association: Washington, DC, USA.

Constantino,J.N. ,Charman,T. (2012) Gender bias, female resilience, and the sex ratio in autism.Journal of the American Academy of Child and Adolescent Psychiatry, 51, 756-758.

Duvekot, J., Van der Ende, J., Verhulst, F. C., Slappendel, G., Van Daalen, E., Maras, A., & Greaves-Lord, K. (2016). Factors influencing the probability of a diagnosis of Autism Spectrum Disorder in girls versus boys. Autism

Fulton, A. M ; Paynter, J. M ; Trembath, D. (2017).Gender comparisons in children with ASD entering early intervention.Research in Developmental Disabilities, 68, pp.27-34.

Ghosh E ; Nilsson, K. W ; Isaksson, J O (2019)‐gender bias in school staff’s recognition of children with ADHD.Acta Paediatrica, 108(6),.1165-1166.

Goldman.S. (2013) Opinion: Sex: gender and the diagnosis of autism—A biosocial view of the male preponderance. Research in Autism Spectrum Disorders, 7, 675-679.

Hull, L ; Petrides, K. ; A, Carrie ; Smith, P ; Baron-Cohen, S; Lai, M-C ; Mandy,W( 2017) “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions.Journal of Autism and Developmental Disorders, 2,47(8), 2519-2534.

Kreiser,NL  White SW.(2014)ASD in females: Are we overstating the gender difference in diagnosis?Clinical Child and Family Psychology Review, 17, 67-84.

Lai, M.-C., & Baron-Cohen, S. B. (2015). Identifying the lost generation of adults with autism spectrum conditions. The Lancet Psychiatry, 2(11), 1013–1027.

Moldavsky, M ; Pass, S ; Sayal, K. (2014).Primary school teachers’ attitudes about children with attention deficit/hyperactivity disorder and the role of pharmacological

Nussbaum N (2012) ADHD and female specific concerns: A review of the literature and clinical implications. Journal of Attention Disorders. 16(2), 87-100.

Owens EB et al. (2017) Girls with childhood ADHD as adults: cross-domain outcomes by diagnostic persistence. Journal of Consulting and Clinical Psychology. 85(7), 723-736.

Phoenix, A. (2018) What is intersectionality? The British Academy, 8.

Pfiffner LJ et al. (2007) A randomized, controlled trial of integrated home-school behavioural treatment for ADHD, predominantly inattentive type. Journal of the American Academy of Child & Adolescent Psychiatry. 46(8), 1041-1050

Rivard, L. M. et al. (2007) ‘Understanding teachers’ perceptions of the motor difficulties of children with developmental coordination disorder (DCD)’, British Journal of Educational Psychology, 77(Pt 3), pp. 633–648. doi: 10.1348/000709906X159879.

Wacker R, Bolte S, Dziobek I. Women know better what other women think and feel: gender effects on mindreading across the adult life span.Front Psychol 2017; 2: 1324.

 

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