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AUTISTIC FEMALES IN THE UNITED KINGDOM

Autistic Females in the United Kingdom

Isabella Moore

SOP 4723: Cross Cultural Psychology

Kemesha Gabbidon, PhD, MPH

November 3, 2022

USFSP
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Autistic Females in the United Kingdom

Background

People must become educated in what "autistic" means. It is not the commonly perceived

stereotype of a person, most commonly a man, whose brain cannot function. Instead, it is a

person whose mind works slightly differently from the general population. Also, by spreading

the fact that women can also be autistic, there will be greater chances of women being studied,

causing an increase in diagnosis. When they are diagnosed, they can receive a correct diagnosis

and treatment plan. By recognizing the camouflaging and disproving stereotypes, more autistic

women will become free to discover the freedom that comes with a diagnosis.

It is crucial not to separate these people from society but to adapt the world to be more

friendly to neurodivergent minds. A neurodivergent mind is one that processes information,

behaves, and interacts in the world in a way different from what a culture would generally

expect. It is the opposite of a neurotypical mind, which is a mind that processes information and

behaves according to the standard expectations of a culture (Villines, 2022). Autism is not the

only neurodivergent condition – ADHD, Bi-Polar, Dyslexia, Downs Syndrome, and Tourettes

are all in the neurodivergent category. Neurodivergence is studied more than ever before, and

autism in the United Kingdom (UK) has been studied immensely. In fact, even though autism is

universal, the UK is one of the top researchers of the condition. The UK has been proactive in

ensuring both its male and female citizens get access to diagnosis and treatment. This is making

a significant difference for the autistic community, as they are now given more space to live the

way they were meant to in the way their brain functions best.

Definition and symptoms

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Anderson-Chavarria (2021) was incredibly straightforward when they described autism

as a “predicament of neurodiversity.” A growing belief is that all minds are neurodivergent,

which is the concept that each mind has individuality and unique traits, so it is crucial to

understand that everyone's mind works differently. This means that the brain functions

differently for different people. No one way is better than another. However, the mind works

even differently when autism is brought into context. Autism is a neurodevelopmental disorder

with impairments in social communication, uncommon repetitive behaviors, high control needs,

and intense sensory sensitivity (Hull et al., 2017). All these impairments stem from physical and

mental reactions to coping with reality and how the world is not built to function with how

autistic minds are wired.

One of the most prominent symptoms of autism is social difficulty. Milner et al. (2019)

describe it as "Not understanding humor, not knowing when to join or add to a conversation,

concerns about coming across as rude, and lack of interest in 'small talk.'" One woman in the UK

stated that it was not the socializing that was scary but the lack of knowing how to do it correctly

(Milner et al., 2019). Other examples include difficulty picking up social cues and successfully

relating to other people during conversations. Eye contact is also a significant symptom, as they

have trouble holding eye contact for more than a few seconds and would rather look down or

away from the person speaking (Hull, Petrides, & Allison, 2017). Obsession with particular

interests is another symptom. Popular obsessions for women in the UK include horses (this is

where the idea and stereotype of a "horse girl" come from), fictional or historical stories,

characters, dolls, fashion, and celebrities (Hull, Petrides, & Allison, 2017).

Possibly the most interesting social coping strategy is camouflaging. Through

camouflaging, the autistic person can fit in more effortlessly as it helps increase connectivity
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with people in social situations (Hull, Petrides, & Allison, 2017). A combination of masking and

compensation techniques, camouflaging is a consistent reason why women are diagnosed so late

in life. In fact, women often mask by internalizing their issues through anxiety and depression,

which are common conditions for the general population. This makes it difficult to diagnose the

condition as autism because general practitioners tend to see the anxiety and depression, not

autism, as the root cause of the issues. Meanwhile, men who camouflage tend to externalize their

difficulties through hyperactivity and conduct problems, which are clear signs of autism or

similar neurodivergent conditions, so they are diagnosed earlier (Hull, Petrides, & Allison,

2017).

Stimming is another aspect of autistic symptoms, as it helps with self-regulation.

Examples of stimming include playing with hair/hair twirling, pacing, picking nails, skin

picking, and repeating words, sentences, or phrases (Jack, 2021). Emotional regulation is also a

difficulty in autism. For example, suppose there is an overwhelming amount of sensory input. In

that case, the autistic community tends to have meltdowns or shutdowns because they have lost

their ability to cope with the pressure of the day (Milner et al., 2019).

Cultural Diagnosis

In the UK, autism diagnoses happen through 'secondary care,' which is a specialized

health service that General Practitioners (GPs) refers to an alleged case (Russell et al., 2021). In

this 'secondary care,' the case is accessed by a multidisciplinary team. The case is referred by

families, schools, young people, or even social workers. Adults' secondary care services are

based on specialist autism or even neurodevelopmental services. Meanwhile, people 19 and

younger go through Child and Adolescent Mental Health Services (CAMHs), a specialist

neurodevelopmental or autism service. Children are simply diagnosed by community pediatric

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teams. All these are secondary care platforms for autism in the UK to be diagnosed (Russell et

al., 2021).

Diagnostic & Treatment Issues

Despite the reality that women are autistic, autism has been coined as a male diagnosis

for many decades. This has caused many women to be given a bipolar or ADHD diagnosis,

creating issues with their treatment and difficulty getting adequate help. Because of this, women

search for treatment, medication, and therapy for their inaccurate bipolar or ADHD diagnosis,

slowing their path to getting the correct treatment for the actual issue of autism. This then causes

inaccurate reports on the number of autistic women in the UK because they are given the

incorrect diagnosis. The following examples of autistic women in the UK who explained why

they were not diagnosed with autism that Milner et al. (2019) reports are intriguing. Two women

with autism testified that they were called a "naughty child" or a "slow learner." One woman

reported that she was diagnosed with depression, even though it was Asperger's, so she was

given treatment for the depression (Milner et al., 2019). One difficult situation is when the

parents of the autistic child do not believe that autism exists, instead, they believe that they are

parenting wrong and therefore causing the child to act differently (Milner et al., 2019).

Co-morbid conditions are another underlying issue when diagnosing autism in the UK.

These include anxiety, OCD, and depression, which all mess with the diagnosis and lead away

from any treatment for the underlying issue of autism (Milner et al., 2019). One example is the

combination of gastrointestinal dysfunction and autism. It is extremely possible for there to be a

connection between GI symptoms and increased occurrences of irritability, social withdrawal,

and hyperactivity (Chaidez et al., 2014, as cited in Tye et al., 2019). Moreover, it is noted that
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autistic, non-verbal children enter clinics because they begin self-injurious behavior and

communicate most effectively through this pain and discomfort (Tye et al., 2019).

The lack of intellectual disability in women in the UK can also cause issues with

diagnosis, typically due to how many men are diagnosed who have intellectual disabilities along

with autism. In fact, Brugha et al. (2016) state, "Autism in women of average or above average

intelligence may be 'masked' by other conditions, such as eating disorders, anxiety disorders, and

borderline personality disorders.” This causes the possibility that these women might be better

than women with intellectual disability at hiding their difficulties by copying normal social

interaction behavior, having better language abilities, varying their particular special interests,

and having less hyperactivity and aggression. When this occurs, these women often miss a

diagnosis, causing the prevalence of autism to be underestimated, plus the women lose access to

help (Brugha et al., 2016).

Plus, women are not as easily diagnosed because their behavioral characteristics of

autism do not match the currently listed symptoms in the UK. This is because autism has

traditionally been believed to be a male-dominated condition, leading to only men being studied.

So, when they access women and do not see that the symptoms/diagnostic criteria match, they

are not diagnosed. It would be easier to diagnose women if they were studied because the doctors

would know what to look for (Kirkovski, Enticott, & Fitzgerald, 2013). Stereotypes are harmful

as well. For example, social withdrawal can be interpreted as "shyness" in girls but

"unresponsiveness" in boys. This unresponsiveness is often a sign of autism while shyness is

considered normal (Lai & Szatmari, 2020).

Universal Vs. Cultural Trends

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As time has passed and autism has continued to be studied, it has become simpler to

diagnose autism. Because of this, the incidence of autism has increased worldwide, especially in

high-income countries. This is occurring because the citizens are being educated upon the

symptoms and habits of those who have it, along with what the concept of what autism means.

With this comes more accessible access to treatment and support, leading to more people being

diagnosed (Roman-Urrestarazu et al., 2022). However, low socioeconomic status, the primary

language spoken at home, and ethnic background greatly impact people's access to diagnostic

services (Roman-Urrestarazu et al., 2022). When this happens, the incidence varies. Autism is

shared globally, but it is not diagnosed because people are unaware or unable to recognize the

patterns in the autistic community.

Regarding the universal prevalence in men and women, Loomes, Hull, & Mandy (2017)

examined fifty-four studies that worked with nearly 14 million participants. The results showed

that out of all those participants, about 54,000 had ASD. When broken down, around 44,000

boys had it, and about 10,000 girls did. This brings the male-to-female ratio closer to 3:1 (based

on the general population), compared to the assumed 4:1 (based on clinical records) ratio

(Loomes, Hull, & Mandy, 2017). This shows the apparent gender bias, causing girls to be at

higher risk and not be as commonly diagnosed as males.

Russell et al. (2021) explain that over 20 years, there was an overall 787% increase in

recorded cases of autism diagnosis in the UK. This is based upon a trend in increasing incidence

of new diagnoses, as a percentage increase from 100% modeled at the baseline year of 1998.

Interestingly, there was a diagnosis increase over time in the UK, as shown in how 1998 only

had one diagnosed adult per 100,000 people. Meanwhile, in 2018, twenty adults per 100,000

people were diagnosed (Russell et al., 2021). Interestingly, females are being diagnosed far more
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now than they were in the past. This is seen through the drastically increased diagnosed female

rates while the male rates stay somewhat the same. (Russell et al., 2021).

A study based on a combined reweighted sample of UK citizens conducted by Brugha et

al. (2016) concluded that the overall UK autism prevalence was 1.1%. Put into perspective, the

combined prevalence of autistic adults of all ages in the UK was 11/1000 (Brugha et al., 2016).

Over time, the prevalence has increased. For instance, the study completed by Russell et al.

(2021) over twenty years shows the difference in numbers. In 1998, out of nearly seven million

people, just over 3,000 had autism. 81.76% were male, while 18.24% were women. Meanwhile,

in 2008, out of just above eight million people, nearly 20,000 had autism. 82.77% were male,

while 17.23% were women. When the last sample was conducted in 2018, out of nine and a half

million people, about 66,000 had autism. 77.49% were male, while 22.51% were women

(Russell et al., 2021). This data showcases the trend that the prevalence of the autism diagnosis

has increased in the UK for both men and women. As the autism diagnosis has become more

acceptable and less regarded in a negative light, fewer people are afraid of receiving a diagnosis.

Along with that, as time goes on and more studies are being conducted, receiving a diagnosis in

the UK has become simpler, increasing the prevalence.

The same study showed that the mean age of diagnosis for men was 12.3 years old, and

for females, it was 14.9 years old (Russell et al., 2021). A possible explanation for this difference

in age diagnosis comes from the likelihood that females tend to have more of a difficult time in

adolescence than males. This could be seen in the increasing adaptation challenges and social

difficulties that become more demanding. When this happens, their autistic traits tend to escalate.

This then causes the need for a diagnosis during this time frame (Lai & Szatmari, 2020).

Role of Culture in the Experience

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A difficulty with autism is how it can be viewed as a disability in the UK. Typically,

when a condition is viewed as a disability, the general population views it as bad. This stems

from religious beliefs that if a person has a disability, they did something bad, and a divine

judgment causes the disability (Pelka, 2012, pg. 5, as cited in Anderson-Chavarria, 2021). This

can be easily seen in the UK, as it has a heavy religious background in Protestantism and

Catholicism. Because of this, autistic females in the UK must fight the presumption that they did

something bad in order for them to receive their condition. Instead, this notion can be forgotten

by educating the public that autism stems from a different wiring in the brain.

Another struggle with a disability in the UK is the tendency for people to discard other

aspects of the person's identity, such as gender, sexuality, and ethnicity. When they do this, they

find themselves simply focused on the person's disability, taking over all future interactions and

making them based on that disability label (Shakespeare, 2006, pg. 71, as cited in Anderson-

Chavarria, 2021). This can cause more stereotypes, which creates more complications for autistic

women in the UK.

Values Related to Help-Seeking

One of the most essential movements toward getting help for the autistic community in

the UK was through the Autism Act in 2009. The Autism Act requires that England provides

treatment for autistic adults. In more detail, it states that the government must continuously

improve its services for autistic adults, including a review of its strategy and statutory guidance

every five years, which is when they can be updated (What is the Autism Act?, 2022). Because

of this act, every council has a diagnosis pathway for adults, leading to a particular Autism Lead

that details their specific diagnosis. Also, it ensures that all autistic adults have access to a social

care assessment (What is the Autism Act?, 2022). When this act passed, in the following years,
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there was a marked increase in adult autistic diagnoses, proving that more of the autistic

community is receiving support (Russell et al., 2019).

As more women are diagnosed, they tend to speak up about how an earlier diagnosis in

childhood would have made such an impact. As more speak up, it creates a domino effect as

more people realize that women are autistic too. This causes more studies to be completed and

the diagnosis process to become less painful. Because of this, there will be more of an effort to

diagnose the alleged cases when they are at a younger age (Russell et al., 2019).

Conclusion

Overall, for a successful understanding of autism, it must be acknowledged more commonly that

women can have autism. As more studies about autistic women occur, the symptoms of

neurodivergence will change, leading to an updated, correct criteria list for diagnosis. With this

will come easier access for female diagnosis, leading to their ability to get help for their

condition. Over time, the autistic community will be able to communicate that they are not a

group of people with malfunctioning brains but simply a group with minds that work slightly

differently. As this is understood, the world will begin to accept this reality and will build the

world into a neurodivergent-friendly place. Meanwhile, the general biases and gender

stereotypes that come with autism will lessen. Because of this, the future for the neurodivergent

community will continue to brighten as they find freedom in their diagnosis.

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