Women, Girls, Autism & Breastfeeding
A resource and education page for birth professionals, healthcare providers...and for everyone else.
But first...
In the context of discussing Autism on this page, it is important to acknowledge that society presents a unique problem to people who are biological women and because they are under-represented in contemporary conversations about Autism, we will have this conversation for fear of being perceived politically incorrect.
-laura
Before we learn about the issues faced by many Autistic girls and women, let’s upgrade our understanding of language surrounding Autism.
Important Words & Ways
Ableism:
To show preference for people without disability.
Allism:
The most common neurotype, also known as “neurotypical”. While Allistic social-emotional and intellectual development tends to be more predictable, Allists experience many of the same vulnerabilities Autistics experience, such as anxiety, processing issues, intellectual disabilities, mental health issues, etc..
A person doesn’t have or live with Allism. They are Allistic.
Autism:
A life-long variant in how an individual experiences the world, communicates language and emotion, and processes thoughts. Development may often be incongruent (not necessarily delayed) to what is expected when compared to an Allistic person, or when measured by Allistic society.
Autistic people commonly feel comfort in repetitive and/or orderly thoughts, actions or movements. Common not-all-inclusive traits of Autistics is literalness, intense-focus in certain topics, sensory-seeking behaviors, self-stimulation (stimming), and collecting. Autistic people may have areas of vulnerabilities that are highlighted or exacerbated when being made to participate in a neurotypical-dominant setting, in the same way that Allistic people would have vulnerabilities is made to participate in an Autistic-dominant setting.
Note: Autistics are as varied in their characteristics and vulnerabilities as Allistics-and in the same way neurodiversity isn’t an assumed common thread that implies automatic compatibility with each other, neither should it be assumed that Autistics are all compatible with one another.
Diagnosis:
The identification of the nature of
an illness or other medical or mental problem by examination of symptoms.
IMPORTANT: Because Autism is not a disease and is considered a “disorder” only in the context of a neurotypicality being considered “ordered”, many Autistics require that the word “diagnosis”, when used in relation to the word “Autism”, be replaced with words like “affirm” or “assess”.
For example:
She was affirmed to be Autistic
as an adult.
My child is assessed to be Autistic.
Autistic Spectrum:
A spectrum used to describe a range of Autism-associated characteristics. It is often used as a figurative line on which to place the degree of vulnerabilities of an Autistic person perceived by others. The Autism “Spectrum” is commonly illustrated with levels of “severity”, from “mild to severe”.
IMPORTANT: Autistics may not view the “Spectrum” illustration as the best way to assess who they are. This placement on a spectrum is confusing at best, because Autistics on all points along the way may appear mildly affected yet may have great inner vulnerabilities, while others who may be considered “severely” Autistic but may not actually feel challenged by their traits. Sometimes, however, the “range of severity” may be used to describe the impact of an Autistic person’s traits on their caregivers, which takes the focus off of the Autistic person.
While gauging Autistic behaviors and location on a spectrum in clinical settings for the purpose of insurance or medical reports may be a acceptable to some, it is best not to casually use a scale to define Autism. Simply using
the term “Autistic” regardless of the perceived severity is always accurate and, if needed, provide an individuals areas of vulnerabilities, as well.
Neurodiversity:
A term used to describe differences in thinking and behavioral patterns (neurodevelopmental variants such as Autism, ADHD, etc.). It was coined with the goal of separating Autism and atypicality from commonly accompanying strengths or vulnerabilities and encompasses other forms of non-Allistic innate thinking “styles”, like neuro-types in which attention and focus shift frequently, or in which movement is necessary to help thinking.
Neurotypical:
A term used to describe a “mainstream” or non-neurodiverse thinker. A neurotypical can also be described as an Allist (the opposite of an Autist).
Person-First vs Identity-First
& scrubbing Identity-First language of abliesm
Person-first language is when a person is literally put before their disease or disability in language.
Identity-first language encompasses person first, and is perceived to be less ableist than person-first language that has a possessive qualifier insinuating illness, such as
Person-first:
“Clara is Autistic.”
Person-first w possessive qualifier generally used with disease or illness:
“Clara has Autism.”
Identity-First, used when a person cannot separate their identity from their person:
“Clara is an Autistic person.”
Still, because of the seeming complexity of language interpretation and preferences in how one prefers to be addressed, it is best to take an Autistic individual’s lead on how they would like to be addressed.
To learn more about identity-first language in the context of Autism, check out this link.
Vocab Take-Aways:
As with the term “Autistic Spectrum”, the term “diagnosis” may be commonly used in clinical and educational settings, and may be accepted in that context by an Autistic, yet not in social or informal contexts.
A person can be Autistic and have giftedness and sensory issues, or they can be Autistic without intellectual disabilities or processing issues but have socio-emotional vulnerabilities. It’s the vulnerabilities that define the level of disability, but being Autistic in and of itself is not a standalone disability.
To not view Autism as a stand-alone disability would do Autistics a huge service, as a person’s disability is mostly affected by their vulnerabilities. People can be Autistic and have few or no perceived vulnerabilities, while others may be Autistic with intellectual impairments and vulnerabilities that require significant support. One experience does not make one more Autistic than the other, and in the same way nuerotyoicals have varying vulnerabilities, it’s the vulnerabilities that are noted when pertinent, not the fact that they’re neurotypical.
As with all neuro-types, by helping Autistics to develop their strengths (and recognize and navigate their vulnerabilities) we encourage Autistics to meet their highest potential.
How do Autistics
experience the neurotypical world?
Sensory:
Sounds, sights, smells, tastes and touch can be overwhelming when in unwelcome amounts to individual Autistics. Some are overwhelmed by too much sensory input, others may be overwhelmed by not enough sensory inputs, and others may need to create their own sensory inputs to help them feel calm in a situation.
Vulnerabilities around sound and noise tend to be experienced most widely by Autistics. Some may find certain sounds and noise levels intolerable, while others may create their own sounds when a space is too quiet. Making repetitive noise, like singing, or squeaking, may be a coping mechanism for Autists to organize overwhelming noise or silence in their surroundings. Not being able to regulate their own state from noise-related feelings of being overwhelmed, can be exceptionally stressful for an Autistic person.
Socio-emotional:
One of the most recognized signs of Autism is when a child (or adult) appears not to meet socio-emotional milestones as expected when measured against neurotypical expectations. Advancement or delays on a neurotypical’s development timeline does not always signal Autism, but the literal dis-order in meeting milestones itself speaks to the possibility that someone may be Autistic.
The time at which full verbal-communication or emotion-showing emerges in Autistic people varies widely and vulnerabilities surrounding communication and socio-emotional ability levels often exist for a life-time. Usually the connection between feelings and communicating them can be challenging which means that navigating situations which call for expression of feelings, or reciprocity and facial expression may not be a strength for an Autistic person. This could look like not being able to display a smile on their face when happy, or getting very upset over something others would perceived as mildly upsetting.
Autistics are sometimes described as robotic, expressionless, feeling-less or apathetic, which stereotypically implies that Autistics do not experience emotions, however, most Autistics internally experience as much or even more emotion as others, yet are challenged in expressing or processing it.
Being gentle or slow-paced in interactions will help Autistic people with socio-emotional vulnerabilities organize their feelings and better communicate them on their terms.
Cognitive Incongruencies
Having incongruencies in certain realms of cognition can be part of the Autistic mind-mapping. Many Autistics are exceptional in some intellectual areas while being exceptionally challenged in others. While this happens with neurotypicals, it can be amplified in Autistics. Some may have complete dominance of academic areas while having a pronounced inability to process information quickly, express emotion, or communicate.
Because Autistics tend to develop special interests (also known as hyper-focuses), it’s possible an Autistic is of average intelligence but has complete mastery over a special interest, making them appear “genius” in a particular topic.
As with the term “Autistic Spectrum”, the term “diagnosis” may be commonly used in clinical and educational settings, and may be accepted in that context by an Autistic, yet not in social or informal contexts.
A person can be Autistic and have giftedness and sensory issues, or they can be Autistic without intellectual disabilities or processing issues but have socio-emotional vulnerabilities. It’s the vulnerabilities that define the level of disability, but being Autistic in and of itself is not a standalone disability.
To not view Autism as a stand-alone disability would do Autistics a huge service, as a person’s disability is mostly affected by their vulnerabilities. People can be Autistic and have few or no perceived vulnerabilities, while others may be Autistic with intellectual impairments and vulnerabilities that require significant support. One experience does not make one more Autistic than the other, and in the same way nuerotyoicals have varying vulnerabilities, it’s the vulnerabilities that are noted when pertinent, not the fact that they’re neurotypical.
As with all neuro-types, by helping Autistics to develop their strengths (and recognize and navigate their vulnerabilities) we encourage Autistics to meet their highest potential.
How do Autistics
experience the neurotypical world?
Sensory:
Sounds, sights, smells, tastes and touch can be overwhelming when in unwelcome amounts to individual Autistics. Some are overwhelmed by too much sensory input, others may be overwhelmed by not enough sensory inputs, and others may need to create their own sensory inputs to help them feel calm in a situation.
Vulnerabilities around sound and noise tend to be experienced most widely by Autistics. Some may find certain sounds and noise levels intolerable, while others may create their own sounds when a space is too quiet. Making repetitive noise, like singing, or squeaking, may be a coping mechanism for Autists to organize overwhelming noise or silence in their surroundings. Not being able to regulate their own state from noise-related feelings of being overwhelmed, can be exceptionally stressful for an Autistic person.
Socio-emotional:
One of the most recognized signs of Autism is when a child (or adult) appears not to meet socio-emotional milestones as expected when measured against neurotypical expectations. Advancement or delays on a neurotypical’s development timeline does not always signal Autism, but the literal dis-order in meeting milestones itself speaks to the possibility that someone may be Autistic.
The time at which full verbal-communication or emotion-showing emerges in Autistic people varies widely and vulnerabilities surrounding communication and socio-emotional ability levels often exist for a life-time. Usually the connection between feelings and communicating them can be challenging which means that navigating situations which call for expression of feelings, or reciprocity and facial expression may not be a strength for an Autistic person. This could look like not being able to display a smile on their face when happy, or getting very upset over something others would perceived as mildly upsetting.
Autistics are sometimes described as robotic, expressionless, feeling-less or apathetic, which stereotypically implies that Autistics do not experience emotions, however, most Autistics internally experience as much or even more emotion as others, yet are challenged in expressing or processing it.
Being gentle or slow-paced in interactions will help Autistic people with socio-emotional vulnerabilities organize their feelings and better communicate them on their terms.
Cognitive Incongruencies
Having incongruencies in certain realms of cognition can be part of the Autistic mind-mapping. Many Autistics are exceptional in some intellectual areas while being exceptionally challenged in others. While this happens with neurotypicals, it can be amplified in Autistics. Some may have complete dominance of academic areas while having a pronounced inability to process information quickly, express emotion, or communicate.
Because Autistics tend to develop special interests (also known as hyper-focuses), it’s possible an Autistic is of average intelligence but has complete mastery over a special interest, making them appear “genius” in a particular topic.
Not Filtering & Over-Sharing
A characteristic of some Autistics is to notice and say everything on their mind. This is commonly referred to as “not-filtering” or as over-sharing. While not-filtering and over-sharing falls within the communication realm, it deserves its own area of discussion on a healthcare platform.
For example, unless a child’s healthcare provider knows that a parent (or patient) is Autistic (and has an updated understanding about Autism), an Autistic patient or parent’s over-talking, over-sharing, and even anxiety and worry, combined with other traits perceived as “awkward” can incorrectly trip safety or mental-health alarms based on the provider’s ignorance or bias about Autistic traits, even if unintended.
Many Autistic parents report feeling a higher burden of needing to come across as “normal” with people in authority for fear that their own neurodiversity could be misunderstood. It may be easier to be silent altogether than to need to process the feeling of being judged for their over-sharing. Finding providers in which all types of sharing are welcome is important to many Autistics.
A characteristic of some Autistics is to notice and say everything on their mind. This is commonly referred to as “not-filtering” or as over-sharing. While not-filtering and over-sharing falls within the communication realm, it deserves its own area of discussion on a healthcare platform.
For example, unless a child’s healthcare provider knows that a parent (or patient) is Autistic (and has an updated understanding about Autism), an Autistic patient or parent’s over-talking, over-sharing, and even anxiety and worry, combined with other traits perceived as “awkward” can incorrectly trip safety or mental-health alarms based on the provider’s ignorance or bias about Autistic traits, even if unintended.
Many Autistic parents report feeling a higher burden of needing to come across as “normal” with people in authority for fear that their own neurodiversity could be misunderstood. It may be easier to be silent altogether than to need to process the feeling of being judged for their over-sharing. Finding providers in which all types of sharing are welcome is important to many Autistics.
Autistic Girls & Women
Now that we’ve had an Autism update, let’s discuss the particulars of Autism in girls and women. At the end of this section professionals will be invited to read about how to support Autistic mothers (not to be confused with mothers of Autistics, who have unique support needs).
•••
If you ask many experts (or Google) about Autism and parenting, chances are you’ll find conversations and articles about parenting children with autism...but you won’t easily find articles about being a parent with autism.
Furthermore, if you ask the experts (or Google) about adult autism, you’ll likely turn up articles discussing Autistic males and their symptoms. Sadly, you won’t find many discussions about how Autistic women experience the neurotypical world, especially in the many cases in which “Autistic-neurology” is the only perceivable “difference” in a girl or woman, meaning she doesn’t have visible vulnerabilities.
Why is autism in women so hard to see and talk about?
Because of the social expectation of appearing “normal” and desirable to be around, many Autistic girls develop coping mechanisms to look perfectly typical early on, yet the energy and preciseness of remaining camouflaged or seeming neurotypical becomes exhausting and generally wanes over time. The ability to pass-off as non-Autistic is called “masking” or “Autistic masking.”
Autistic Regulation & Girls/Women
Autistic women and girls may manage their reactions to overwhelming situations without “stimming” or other stereotyped Autistic behaviors when compared to Autistic males. In fact, Autistic girls may only soothe themselves via repetitive movements, words or thoughts when they are alone or around accepting friends or family members, and some may stim via repetitive play. In fact, a common occurrence with Autistic girls is for them to have meltdowns, or “shut-downs” after transitions...like having a seemingly good day at school or with grandparents and then a full-on meltdown in the car on their way home. Or, having a successful though over stimulating day at work, yet coming home to have good cry ti help process it.
Also, instead of publicly hyper-focusing verbally on one topic, some Autistic women or girls may regulate their state by writing or draw about their interests, or take a special interest or hobby to an extreme. Many Autistic women may be better able to appear social (i.e. making the needed eye-contact to pass off as typical). As mentioned, Autistic girls and women may perform well socially in short bursts, yet feel easily overwhelmed and
descompensate by crying, isolating, or stimming following transitions or after social interactions that feel overstimulation. Others may jump into their special interest after a long day or stressful situation in order to organize and process their day’s events and thoughts.
Prolonged Autistic Masking & the Risk of Trauma-Anxiety & Depression
As mentioned, outward behavioral features of an Autistic young girl or woman may be unintentionally masked, yet for many girls, masking-mechanisms wane near or after puberty. Around adolescence, non-Autistic society and behaviors change, leaving many Autistics trying harder to keep up. When fitting-in becomes harder, coping mechanisms emerge that can quickly progress from the typical Autistic sensory anxieties and Autistic traits experienced early in life, to intense trauma-based social anxiety, more intense trauma-based stimming, and frequent isolation (although not every person with a preference to isolate has experienced trauma), particularly when she/they feels unaccepted or inferior as a result of others not understanding Autism. Still left unanswered is whether the hormones of puberty lead to an augmentation in Autistic characteristics in young women, or if it’s a discrepancy in the momentum between society and an Autistic girl’s social capacities, or if it is both.
The energy spent on trying to seem neurotypical in the long-term can create trauma-based anxiety (vs. sensory anxiety), depression, and physical illness. Fortunately, when Autistic girls and women are helped to understand how their unique thinking patterns can be used, and that stimming is ok, and when family’s are supported to understand Autistic behaviors, it is absolutely possible to avoid and mitigate the development of life-long mental health disorders.
Now that we’ve had an Autism update, let’s discuss the particulars of Autism in girls and women. At the end of this section professionals will be invited to read about how to support Autistic mothers (not to be confused with mothers of Autistics, who have unique support needs).
•••
If you ask many experts (or Google) about Autism and parenting, chances are you’ll find conversations and articles about parenting children with autism...but you won’t easily find articles about being a parent with autism.
Furthermore, if you ask the experts (or Google) about adult autism, you’ll likely turn up articles discussing Autistic males and their symptoms. Sadly, you won’t find many discussions about how Autistic women experience the neurotypical world, especially in the many cases in which “Autistic-neurology” is the only perceivable “difference” in a girl or woman, meaning she doesn’t have visible vulnerabilities.
Why is autism in women so hard to see and talk about?
Because of the social expectation of appearing “normal” and desirable to be around, many Autistic girls develop coping mechanisms to look perfectly typical early on, yet the energy and preciseness of remaining camouflaged or seeming neurotypical becomes exhausting and generally wanes over time. The ability to pass-off as non-Autistic is called “masking” or “Autistic masking.”
Autistic Regulation & Girls/Women
Autistic women and girls may manage their reactions to overwhelming situations without “stimming” or other stereotyped Autistic behaviors when compared to Autistic males. In fact, Autistic girls may only soothe themselves via repetitive movements, words or thoughts when they are alone or around accepting friends or family members, and some may stim via repetitive play. In fact, a common occurrence with Autistic girls is for them to have meltdowns, or “shut-downs” after transitions...like having a seemingly good day at school or with grandparents and then a full-on meltdown in the car on their way home. Or, having a successful though over stimulating day at work, yet coming home to have good cry ti help process it.
Also, instead of publicly hyper-focusing verbally on one topic, some Autistic women or girls may regulate their state by writing or draw about their interests, or take a special interest or hobby to an extreme. Many Autistic women may be better able to appear social (i.e. making the needed eye-contact to pass off as typical). As mentioned, Autistic girls and women may perform well socially in short bursts, yet feel easily overwhelmed and
descompensate by crying, isolating, or stimming following transitions or after social interactions that feel overstimulation. Others may jump into their special interest after a long day or stressful situation in order to organize and process their day’s events and thoughts.
Prolonged Autistic Masking & the Risk of Trauma-Anxiety & Depression
As mentioned, outward behavioral features of an Autistic young girl or woman may be unintentionally masked, yet for many girls, masking-mechanisms wane near or after puberty. Around adolescence, non-Autistic society and behaviors change, leaving many Autistics trying harder to keep up. When fitting-in becomes harder, coping mechanisms emerge that can quickly progress from the typical Autistic sensory anxieties and Autistic traits experienced early in life, to intense trauma-based social anxiety, more intense trauma-based stimming, and frequent isolation (although not every person with a preference to isolate has experienced trauma), particularly when she/they feels unaccepted or inferior as a result of others not understanding Autism. Still left unanswered is whether the hormones of puberty lead to an augmentation in Autistic characteristics in young women, or if it’s a discrepancy in the momentum between society and an Autistic girl’s social capacities, or if it is both.
The energy spent on trying to seem neurotypical in the long-term can create trauma-based anxiety (vs. sensory anxiety), depression, and physical illness. Fortunately, when Autistic girls and women are helped to understand how their unique thinking patterns can be used, and that stimming is ok, and when family’s are supported to understand Autistic behaviors, it is absolutely possible to avoid and mitigate the development of life-long mental health disorders.
Selective Mutism as a Common Trait in Autism
Worth mentioning is that girls with Autism may have selective mutism more often than Autistic boys. Selective mutism can appear as extreme shyness, hesitation or inability to talk in certain situations yet it’s actually and anxiety disorder. Children or adults who experience selective mutism may be passed off as traumatized (and some children who are traumatized do go mute) but in case of selective mutism in Autism, there does not need to be a traumatic trigger, and children may be otherwise talkative around their close friends or family members. Learning about Selective Mutism, and ways to support people who experience it is important, both to provide proper support and also to help withhold judgement surrounding it.
More Learning
While this article was intended to be a basic learning tool for people looking to update their approach to, and acceptance of Autistic people, I hope that it’s greatest outcome is that the understanding and acceptance of Autism (and interaction with Autistics) is normalized.
•••
If you are a birth professional or work with parents, I invite you to read this blog to learn how to make your practice more inclusive of Autistic and neurodiverse people.
💜,
Laura
While this article was intended to be a basic learning tool for people looking to update their approach to, and acceptance of Autistic people, I hope that it’s greatest outcome is that the understanding and acceptance of Autism (and interaction with Autistics) is normalized.
•••
If you are a birth professional or work with parents, I invite you to read this blog to learn how to make your practice more inclusive of Autistic and neurodiverse people.
💜,
Laura
Resources for learning about
Autism & Neurodiversity
in Women and Girls
Written by an Autistic woman, this is compilation of what women and girls with autism experience and how they “mask”/adapt:
https://the-art-of-autism.com/females-and-aspergers-a-checklist/
“The Lost Girls”
https://www.hyggeme.uk/community-corner/2019/9/27/who-is-going-to-help-the-lost-autistic-girls
What does it feel like to be Autism?
https://m.youtube.com/watch?safe=active&v=Lr4_dOorquQ
https://m.youtube.com/watch?v=9bC5Daif__8
https://m.youtube.com/watch?v=SukO28tQywI
Autism in Women & Girls: https://www.aane.org/women-asperger-profiles/
Challenges of being recognized as a female with Autism https://researchautism.org/the-autism-dilemma-for-women-diagnosis/
Mothering with Autism
https://www.theguardian.com/lifeandstyle/2017/apr/15/women-autistic-mothers-undiagnosed-children
Screening for Adult Neurodiversity: https://rdos.net/eng/Aspie-quiz.php
Selective Mutism
https://www.selectivemutism.org/
Autism & Neurodiversity
in Women and Girls
Written by an Autistic woman, this is compilation of what women and girls with autism experience and how they “mask”/adapt:
https://the-art-of-autism.com/females-and-aspergers-a-checklist/
“The Lost Girls”
https://www.hyggeme.uk/community-corner/2019/9/27/who-is-going-to-help-the-lost-autistic-girls
What does it feel like to be Autism?
https://m.youtube.com/watch?safe=active&v=Lr4_dOorquQ
https://m.youtube.com/watch?v=9bC5Daif__8
https://m.youtube.com/watch?v=SukO28tQywI
Autism in Women & Girls: https://www.aane.org/women-asperger-profiles/
Challenges of being recognized as a female with Autism https://researchautism.org/the-autism-dilemma-for-women-diagnosis/
Mothering with Autism
https://www.theguardian.com/lifeandstyle/2017/apr/15/women-autistic-mothers-undiagnosed-children
Screening for Adult Neurodiversity: https://rdos.net/eng/Aspie-quiz.php
Selective Mutism
https://www.selectivemutism.org/