Autism in adult women: Why we miss the signs and ways to get support
Most boys with autism spectrum disorder get diagnosed in childhood. So why do many women only find out they have autism when they are adults? CNA Women finds out why females suffer from a missed diagnosis and how the ones who do, seek help and thrive.
Recently, a family friend shared their discovery of their teenage daughter’s autism. The girl’s outbursts occurred when she was unable to process loud noises. Subsequently, my friend got herself tested and discovered that she too, had autism.
She’s not alone. Another friend got herself diagnosed as a mild case, after her young son was found to be on the spectrum.
Autism or autism spectrum disorder (ASD) is a complex developmental condition that affects the central nervous system. It affects how one interacts, communicates, learns and behaves.
DIAGNOSING AUTISM SPECTRUM DISORDER
The first symptoms often appear at 18 months and autism is reliably diagnosed when a child is three. Because there are many sub-types of autism and it is a spectrum disorder, each person will present symptoms differently, with varying levels of severity. It cannot be fully categorised by a specific set of symptoms.
In early childhood, symptoms present as speech delay or lack of communication, such no eye contact, fewer facial expressions, restrictive and repetitive behaviours.
A psychologist will provide a diagnostic assessment to determine the condition, mapped to the history of the child’s developmental history and behaviour.
Doctors in Singapore use the international standardised assessment tests such as the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R) to determine the severity of ASD.
With diagnosis, individuals may be supported with a number of treatment options, such as behavioural therapy to help with challenging behaviours and encourage more social skills, and occupational therapy, which is focused on purposeful activities to help children with ASD achieve more independence in day-to-day activities.
As yet, there is no medication to “cure” autism, however there are medications to manage the behaviours which come with ASD.
DIFFERENCES IN MEN AND WOMEN WITH AUTISM
Globally, one in 100 children are diagnosed with autism and this number has risen since the last study done in 2012. In Singapore, the Institute of Mental Health (IMH) finds that one in 150 children are diagnosed with the condition.
The US Centers for Disease Control and Prevention has found that ASD is 4.2 times more prevalent in boys than in girls.
Males are more likely to present symptoms such as:
- Developing rituals and strict routines
- Making less eye contact
- Experience distress in crowded and noisy spaces
- Lack of social skills
- Distress when things are not done in the way they had always done
Females may present one or all these symptoms but their social skills tend to be more developed, so they behave in a way that “masks” their ASD – they rely on other children to guide, speak for them and may display a passionate but limited range of understanding on their topics of interest.
WHY WOMEN AREN’T DIAGNOSED WITH ASD EARLY
A late diagnosis tends to occur in women who are high-functioning and low on the spectrum. They are less rigid in their habits and show more adaptability in everyday situations.
According to the psychologists who consult for Singapore’s Autism Resource Centre (ARC), women who are diagnosed in adulthood often have average or above average intelligence. They tend to have less severe cases of autism and their behavioural manifestations are less pervasive.
When these women with ASD “act out”, their outbursts come in two forms: Either a shutdown where they close off contact or they have outbursts, displayed in a variety of ways.
So how do their symptoms go under the radar?
MASKING IS COMMON
Said Dr Sajith Sreedharan Geetha, senior consultant at the Department of Developmental Psychiatry at IMH, “Some females with ASD, especially those with no intellectual disability, may learn to imitate socially appropriate communication styles from others or prepare themselves for conversations in social settings.
“This behaviour is known as ‘camouflage’ or ‘masking’ and helps them fit in with their peers,” he explained.
Other masking behaviour include:
- Forcing themselves to make eye contact in conversation
- Preparing phrases and even jokes ahead of social settings
- Mimicking others’ behaviour, even facial expressions and gestures
The downside is these are superficially effective and cognitively exhausting, leading to more stress and emotional difficulty, he added.
“BOYS WILL BE BOYS AND GIRLS WILL BE GIRLS”
Other than the ability to “mask” and be socially integrated, social norms and accepted stereotypes about girls being “quieter” than boys allow females to go undiagnosed for a long time.
“Their autism goes unnoticed as they display less hyperactive or disruptive behaviour commonly seen in boys with ASD. Their difficulty interacting with their peers is not evident to the untrained eye,” said Dr Sajith.
He added that women tend to get diagnosed in adolescence or early adulthood when they can no longer cope with social demands and have emotional difficulties. This may lead them to being identified with psychiatric conditions such as borderline personality disorder, or anxiety, instead of ASD.
Consultants to the ARC echo this observation but add that women seek their own diagnoses when they recognise behaviours from personal experience and research their condition.
While it is common for individuals with ASD to also have depression or other disorders like anxiety and obsessive-compulsive disorder, these can be treated and managed effectively with the right support.
DON’T GIVE UP, DON’T SHUT DOWN OR SHUT OUT EVERYONE: ONE WOMAN’S ASD STORY
Jesselin Ong, 22, received a formal diagnosis when she was in hospital after a serious accident in 2015, when she was in her teens.
As a child, she refused to speak until she was seven, and was always fidgeting. As an adult, she says she would walk out of meetings if she felt bored, or “ask people hilariously morbid questions”.
“I have sensory sensitivities and avoid ‘slimy’ food like runny egg yolks or fried Hokkien mee. I avoid wearing pants and till today, I still only wear dresses,” said the IT consultant.
She found out about her condition when she spoke with a psychologist in the hospital. Even then, she didn’t believe anyone could help. “I considered psychologists silly,” she said.
Acceptance was key to understanding her condition. “My parents blanked out my diagnosis and told me I was entirely normal. However, my aunt, who was my guardian, tried to help … If the TV at home was too loud, she would lower the volume. And that helped a great deal.”
While she didn’t care about the diagnosis as a teen and refused the support she was offered, in adulthood, Ong found that having access to such services have been a great help. She learned what her triggers were, such as having too much light, or unfamiliar people coming in and out of rooms.
“As an adult, I started to learn and look into my diagnosis and realised there is finally an explanation for feeling different. That my inability to fit in was not a personal failing but a symptom of my condition.
“Being older now has helped me learn coping skills. It’s a trial by fire but I learnt how to get along and manage my autism with minimal effort.”
Before her diagnosis, Ong thought autistic people were incapable of living independently or contributing productively to society. Her diagnosis gave her the courage to break out of that stereotype. “I discovered that I am capable of holding a job, surviving on my own, having friendships and feeling connected to others.
“I’ve learned to seek professional help and be vulnerable with trusted friends and family. We tend to try and do everything ourselves so having a support circle around me for both good and bad days is incredibly important for mental health.
“My advice to anyone who has received their diagnosis is this: Don’t give up, don’t shut down or shut out people. Autism does not define me.”
LATE DIAGNOSIS CAN BE A POSITIVE THING
Dr Syed Harun Alhabsyi, consultant psychiatrist at Better Life Psychological Medicine Clinic, says late diagnosis can be a positive thing. “This means that the woman’s level of developmental dysfunction is subtle and not so stark as to invite an early diagnosis. It’s likely that these women have developed coping strategies to overcome their limitations in social interactions.”
But a late diagnosis may also mean that such women have struggled with difficulties from their growing years, well into adulthood. This makes them vulnerable to developing emotional difficulty, leading to unhealthy coping strategies such as extreme social avoidance.
However, all is not lost. Dr Syed believes that a later diagnosis is attributed to distress in new social environments such as work and the need to navigate social engagements and build meaningful relationships in these settings.
“These are higher order skills which will take them longer than others to grasp. They may have failed attempts before grasping the nuance of social norms. And for this, women with autism may require therapy to become more conscious of social settings and developing their own skills to handle such situations.”
Dr Sajith added: “Women who got their diagnosis later in life have often reported that it helped them to understand and accept themselves better.”
Once a woman has received a formal diagnosis of ASD, it is important to seek the right treatment from psychiatrists, psychologists and other therapists to address their sensory sensitivities, emotional difficulties and improve their social engagement skills.
LIVING WITH ASD: AT WORK
Dr Sajith says getting and sustaining employment is challenging for people with ASD, regardless of gender.
Even if they have the required educational qualifications, they may have difficulties in communication. They may underperform at job interviews, have troubling social interactions with colleagues, or even feel underestimated in the workplace.
To overcome this, being open about their diagnosis with co-workers to help them understand ASD is key. This way, they also get support from their employer in adapting the workplace environment to make it more inclusive to those on the spectrum.
Consultants for the ARC believe that a keen balance of technology, such as noise-cancelling headphones to block excess noise, and people in the work environment, can be tailored to each person’s condition. Having this setting and empathy can build on the individual’s strengths and skill set in the workplace.
LIVING WITH ASD: FRIENDSHIPS, MARRIAGE & RAISING A FAMILY
While it has been suggested that women with ASD can be easily manipulated and abused in relationships, there is limited research on this. “The quality of relationships would depend on the severity of their autism-related impairments and how their friends and partners are willing to adapt and accept their difficulties,” noted Dr Sajith.
People with ASD would require insight into their own limitations, such as blind spots in social settings or how certain stimuli may impact them more than others. Partners too, need to understand the challenges and worldview of their autistic partner and how to navigate and support them.
What about pregnancy and caring for children? Those with ASD may need to cope with anxiety related to changes in their routine as well as sensory-related triggers from pregnancy. Their ability to care for their children depends on the support they receive from loved ones, the severity of their autism and other disorders.
However, consultants from the ARC believe that people with autism, not just women, can have fulfilling relationships and full lives with a better understanding of their condition, and knowing how to navigate when these behaviours occur.
If you suspect that you have ASD or present symptoms which may be neurodiverse in nature, do seek a professional diagnosis with a psychiatrist or psychologist.
And if you know of someone who has been formally diagnosed with ASD, do remember to show some empathy and withhold judgement.
This cannot be said enough: Being different is okay.
Read this story in Bahasa Melayu here.
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