What Autistic Women Have To Say
Many of the autistic women weve spoken to have talked about getting a late diagnosis, or have had difficulty getting the support they need.
As part of our Stories from the Spectrum series, we interviewed several women and girls, who shared their experiences with us.
“I feel autistic women are more likely to be described as anxious and an autism diagnosis overlooked, since it can challenge gender stereotypes.” Dr Camilla Pang
Sara Gibbs, autistic comedy writer, told us: “I think there is a lack of understanding of how autism can present in girls, who are often socialised differently.”
Charl Davies, autistic tattoo artist, said: “I find that being a female I am expected to behave a certain way to fit in socially which is why I have spent so much time masking.”
Dr Camilla Pang, autistic scientist and author, explained: “I feel autistic women are more likely to be described as anxious and an autism diagnosis overlooked, since it can challenge gender stereotypes.”
Dr Kate Fox, autistic poet and comedian, said:“I dont think theres an inherent difference between autistic men and women. What there is a difference in, is how society treats and socialises males and females.”
What Causes Autism In Women
Experts arent sure what causes autism. Given the wide range of symptoms and severity, autism is likely caused by several factors, including genetics and environmental factors.
While theres no evidence that the exact cause of autism is different between the sexes, some experts suggest that boys are at a higher chance of developing it.
For example, investigators believe that girls might be born with genetic protective factors that reduce their chance of autism.
Theres also an emerging theory called the extreme male brain theory. Its based on the idea that fetal exposure to high levels of male hormones in the uterus might affect brain development.
As a result, a childs mind might focus more on understanding and categorizing objects, traits that are generally associated with the male brain. This is in contrast to empathizing and socializing, which are more often associated with female brains.
The effect of hormones on brain development isnt well known yet, giving this theory some major limitations. Still, its a start toward understanding how autism develops and why it appears more in boys than girls.
Boys Are Diagnosed With Autism Four Times More Often Than Girls
1 in 54 children in the U.S. is diagnosed with an autism spectrum disorder in 2020, according to the CDC based on data from 2016. 1 in 34 boys and 1 in 144 girls identify as autistic. Boys are four times more likely to be diagnosed, and they’re diagnosed earlier. Most children are still being diagnosed after four years of age but can be confidently diagnosed at two. Because of the disparity in health care, minority groups are diagnosed later and less often. Autism Spectrum Disorder is still very mysterious to the scientific community. Some parents believe that vaccinating their children causes ASD. The scientific community has proven this as a myth and completely untrue.
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Subtle Signs Of Autism In Women Allow The Condition To Go Unnoticed
Women with autism often display very different symptoms than men with autism, which may lead to an incorrect diagnosis or failure to be referred for diagnosis.
Not only do many women with autism spectrum disorder act in a more socially neurotypical wayusually as a result of having put a considerable amount of effort into learning how to act sociallybut the focus of their attention is different to that of men with ASD.
Here are five signs of autism in women:
1. Intense focus on a person/band/celebrity
One of the criteria used for determining ASDfor instance, in Simon Baron-Cohens Aspergers Test1is an intense focus on “things,” which may be related to collecting and hobbies such as train spotting.
Women with ASD also display very intense interests but, whilst they may be focused on objects, their focus is just as likely to be on people. Girls growing up with ASD may become obsessed with a celebrity or band to the extent that they need to know every single fact about them. Many of my clients who are in relationships become so focused on their partner that they can lose sight of their own needs.
Because a focus on celebrities and people is seen as more “normal” than a focus on collecting model cars or napkin rings, it contributes to the fact that girls and women may fail to be diagnosed with ASD.
3. Disliking uncomfortable clothes
4. Lack of eye contact
5. Less severe symptoms than men with ASD
There Is Hope For Women With Autism
At any age, there is hope! I contributed to an article about 8 signs of autism that are usually missed. Usually, these women feel relieved to receive an autism diagnosis. It just helps them make sense of their lives. They can reevaluate their life through the autism lens.
Throughout their life, many autistic women were blamed and shamed for their behavior and their family, school staff, and medical professionals did not understand how these were autism traits that were needing support, not shame and judgment.
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How Does Asd Present In Women
While every girl and woman with ASD is unique, many share certain experiences. According to the Asperger/Autism network, a female with ASD may:
Know that she is different, noticing that her interests veer away from those of her peers.
Prefer having only one or two friends, or to play in solitude, having an appreciation of and focus on specific interests.
Demonstrate an aversion to what is popular, what is feminine, or what is fashionable.
Be sensitive to textures, she might prefer to wear comfortable, practical clothing.
Appear naive or immature, as she is out of sync with the trends or the social norms.
Work very hard to camouflage her social confusion and/or anxiety through strategic imitation, by escaping into nature or fantasy, or by staying on the periphery of social activity.
Show different sides of her personality in different settings.
Be more prone to releasing her bottled up emotions at home through meltdowns.
Be exhausted from the work of deciphering social rules or of imitating those around her to hide her differences.
Be anxious in settings where she is asked to perform in social situations. This could lead to mutism, escapism, or a focus on routines and rituals.
What Helps With Autism And Adhd
There is no one-size-fits-all answer to this question, as different people with autism or ADHD may find different things helpful in managing their condition. However, some common interventions that may be helpful for people with autism or ADHD include behavioural therapy, medication, and educational support.
It is frequently misdiagnosed as ADHD in children due to an underlying neurobiological disorder. Children aged 2 to 17 accounted for 9.4 percent of all diagnosed cases of ADHD in the United States. In addition to autism spectrum disorder , an increasing number of children are affected. If there are any of these conditions, children may have difficulty communicating and concentrating. For many years, doctors were hesitant to diagnose children with both ADHD and ASD. The APA now recognizes the possibility that the two conditions can coexist. ADHD symptoms are seen by 30% to 50% of ASD sufferers.
While more research is needed to determine the connection between the conditions, it appears that they do exist. In some cases, children and general practitioners may not have realized that a condition they are unaware of complicates support plans. It is critical that the patient receives the proper diagnosis and support. It is also possible to help your child manage his or her symptoms of ASD if he or she is well-managed by ADHD. Researchers are still studying the link between these two conditions.
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First Lets Run Through Some Common Signs Of Autism In Adults:
finding it hard to understand what others are thinking or feeling
getting very anxious about social situations
finding it hard to make friends or preferring to be on your own
seeming blunt, rude or not interested in others without meaning to
finding it hard to say how you feel
taking things very literally for example, you may not understand sarcasm or phrases like “break a leg”
having the same routine every day and getting very anxious if it changes.
Diagnosis Is Rebirth: Women Who Found Out They Were Autistic As Adults
Women from around the world describe the life-changing impact of finally receiving a diagnosis
Less than 20 hours after asking women who had received a late diagnosis of autism, we received 139 replies from around the world.
There were women whose lives had been scarred by victimisation, from bullying to rape, because without a diagnosis they did not know they were highly vulnerable to manipulation and abuse.
There were women who were diagnosed in their 70s, who had known there was something different about them for 60 years. There were those who described the decades-long struggle to fit in as a trauma that pushed them to mental collapse, sometimes to the point of attempted suicide.
Others had wasted decades being misdiagnosed, prescribed unnecessary drugs and forced to remain in mental health wards while experts failed to diagnose their condition or refused to listen to the womens accurate self-diagnosis because, the experts insisted, the woman did not look or act autistic.
Women of colour and non-binary women seemed to find it particularly hard to get diagnosed.
I was around 20 when I started to question whether I could be autistic but quickly dismissed this possibility because as a young Black woman, I did not fit the stereotypical autistic presentation of a young, white boy, said one 35-year-old woman who asked to remain anonymous.
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Potential Partner As Intense Interest
Some women with ASD become infatuated with their partner, thinking about them constantly, wanting to know everything about them, what they did and where they were, etc.
This is partly due to their intense interest in people rather than objects, whether in pursuing passions or in relationships.
This is why these women need support to understand their strong feelings for someone, learn how to put them in perspective, and learn what socially acceptable behavior is and what may be considered scary and weird.
Understanding Autism In Women
Autism is rarer in females than in males. In fact, one major researcher in the field, Simon Baron-Cohen, wrote that autism is a manifestation of the extreme male brain.
There does seem to be a real difference in the number of females who are actually diagnosed with autism versus the number of males. But this so-called “female protective effect” is still being explored.
In recent years, it has become clear that autism is underdiagnosed in females. There are a number of reasons for this:
- Girls are more likely to internalize anxiety related to autism instead of behaving aggressively, they are more likely to become depressed or anti-social.
- Most cultures make it acceptable for girls to be “shy” whereas shyness is less acceptable in boys.
- When girls with autism focus exclusively on a particular interest, they are more likely than boys to choose a socially acceptable fascination such as unicorns or dolls.
Because fewer females have autism, fewer females with autism have been included in studies. More attention is now being paid to how autism manifests in females.
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Signs You May Have Asd Or Adhd
When it comes to diagnosing ASD and ADHD, you should consult with a qualified healthcare provider. However, there are some symptoms that can help you determine whether you have either condition or not. If you have any of the following symptoms, you should consult with a healthcare provider. In terms of social interaction and communication, you are lacking. You are oversensitive to sound or smell and struggle with sensory processing. You engage in repetitive behaviors or interests, which may be associated with them. If you have any of these symptoms and also meet the diagnostic criteria for autism or ADHD, you may be able to benefit from additional support. It is important to remember that not every person with ASD or ADHD is the same. There is no set amount of difficulty associated with ASD or ADHD some people may have more severe symptoms than others.
Appropriate Support Throughout Schooling
Ideally, Sophie would have been diagnosed as a child. She could have benefited from specialised support throughout her schooling, as is legally required in France and other countries. This support would have made her less vulnerable, giving her the tools to defend herself from bullying in the schoolyard and helping her learn with teaching methods adapted to her way of thinking. Upon leaving school, her diagnosis would have opened up access to labour rights, such as disabled worker status, which would have helped her find an adapted employment. Sophies life would have been simpler and she would be more at peace with herself.
But Sophies problems are twofold. Not only is she autistic, but shes also a woman. If getting a diagnosis is already tricky for men, its even more difficult for women. Originally, autism was thought to only rarely affect women. This erroneous idea, which emerged from a 1943 study conducted by Léo Kanner , has been reinforced by the long-dominant psychoanalytical approach. The criteria defining autistic symptoms were based on observations in boys.
Later, when science replaced psychoanalysis as the dominant model, studies were largely conducted on male children, thus reducing the chances of recognising autism as its manifested in females. This phenomenon, also present in other areas of science and medicine, has far-reaching implications today.
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How Is Autism In Women Treated
While theres no cure for autism, medications can help to manage certain related symptoms or disorders that may co-occur.
But medication is only one aspect of autism support. There are many types of physical, occupational, and talk therapies that can help you better interact with the world around you and manage your symptoms.
Anxiety Depression And Wellbeing In The Sample
All fourteen participants completed the HADS and GHQ-12. The mean HADS-A score was 13.5 , which lies above the recommended clinical cut-off. All but one participant scored above the cut-off score. The mean HADS-D score was 5.3 , below the clinical threshold, with three participants scoring in the clinical range. The mean GHQ-12 score was 15.4 , below the cut-off indicating mental disorder. Three participants scored in the distress range and a further two fell in the severe range, indicative of severe psychological difficulties at the time of interview.
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The Differences Among Men And Women With Autism
While focusing on the factors that may affect this sex ratio, its important to remain mindful of a possible diagnostic bias. When it comes to autism and women, research suggests that girls receive diagnoses later in life. This means that female autism symptoms may be tougher to spot. As reported by Spectrum, girls are often diagnosed only if they showcase significant social impairments. Researchers are concerned that females who are more mildly affected are being missed.
Since signs of autism in women may not be as obvious, and because doctors, teachers, and parents often associate autism with boys, a significant number of girls and women with autism may be overlooked.
Many of the tools used to diagnose autism are also based on observations of behaviors in boys and men, and since autism may look different in females, the current sex ratio is likely inaccurate. However, even if this diagnostic bias was overcome, men would still likely be diagnosed more often than women. This theory was supported by research presented at the 2015 International Meeting for Autism Research. When scientists followed children from infancy and repeatedly screened for autism to minimize this bias, a three-to-one sex ratio was still found.
In terms of biological variables, the brains of individuals with autism tend to show gene expressions that are more typical among males than females. Women may also be somewhat protected compared to males in regard to genetic mutations.
Breaktimes And Social Interaction
Breaktimes can be the most stressful part of the school day for girls with autism.
Breaktimes usually include social interactions and requirements to understand relationships complexities and negotiations and rules of play.
All of this is more likely to make the girl with autism more exhausted than she was when she left the classroom, which negatively affects her behavior, performance and general well-being at school.
Moving into adolescence, friendships change from toy-based and pretence games, to personality-based relationships.
These relationships involve subtle and nuanced communication that further increases the young womans struggles.
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Son And Activist Has Inspiring Message For Moms Of Kids With Autism
Magro said he believes that recent revelations of autism diagnoses from the likes of Elon Musk, Wentworth Miller and former “Bachelor” contestant Demi Burnett might help change the way people think about autistic adults.
Visibility can help people get better diagnoses Nichols, for example, watched a lot of autistic TikTok creators who helped her advocate for herself to receive her diagnosis. She said she wishes there was more accurate representation in traditional media, though.
I cant even think of a Black autistic character on anything, Nichols said. Its just a lack of representation. So that people dont even consider it as a possibility when I share my story. One of the main responses that I got was, I didnt know people could get diagnosed as an adult.
Nichols noted that while social media can help many people feel less isolated and can normalize some feelings, it also can be a double-edged sword.
While there is a lot of divisiveness in the community, I have found some really great people that I have been able to talk to in the online space, she said. As females one thing we have in common is the majority of us got diagnosed later in life, which is common, unfortunately.