Dr. Kim Sage is a licensed clinical psychologist in southern California. Dr. Sage joins me to discuss her discovery that she may be autistic, the problem of autism underdiagnosis, and the close connection between autism and personality disorders (especially narcissistic personality disorder) within families.
Dr. Sage also talks about her early autistic traits, friendship challenges, autistic traits’ impacts on romantic relationships, and more.
Today I’m speaking with Dr. Kim Sage, a licensed clinical psychologist based in Southern California, but before I share our conversation, I’d like to thank Colette for your generous one-time show of support to the Other Autism podcast.
Cat is an Australia-based, late-identified autistic individual who suddenly lost the ability to mask following the death of her baby.
Kristen and Cat discuss being autistic while undergoing fertility treatments, trauma in midlife, out-of-order loss and bereavement, polyvagal theory, the ways life crises often precede late identification of autism, and more.
If you’d like to know more about this topic, check out:
I recently read this beautiful post by a young autistic woman named Emily, in which she talks about the joy and vibrancy of autism.
“I see the world in all its vibrance. I am uplifted at once by the sound of birds. The feeling of the sun on my skin makes me feel so warm. I’m sure I see more shades of green than other people. I notice those small details that others don’t. My eyes are constantly searching.”
Emily’s post inspired me to reflect on the things I love about being autistic. Since so much content about autism and neurodiversity is negative or focused on the difficulties and challenges, I am grateful for the opportunity to discuss the good things.
1) Autistic bliss
I’m not sure if “autistic bliss” is an actual term, but I’m often in awe of the beauty around me. I’m often moved to tears by a beautiful song or painting or writing or amazing scene in a film. I experience this almost daily unless I’m very stressed or sick.
Based on non-autistic people’s reactions over the years, I’ve learned that these feelings or sensations are not the norm. They are, however, normal for many autistic people.
Learning a new skill or acquiring new information can also give me this blissful feeling. Which leads me to:
2) Many interests
My interests are all over the place, ranging from literature and history to biology and architecture. I never feel like there’s enough time in the day to pursue all of these topics. Regardless, my focus can be very intense when it comes to my interests, and I derive a lot of pleasure and contentment from repeatedly entering a state of flow.
“Flow is one of life’s highly enjoyable states of being, wrapping us entirely in the present, and helping us be more creative, productive, and happy.”
Getting into this flow state reduces stress and helps me self-regulate.
3) Deep friendships
Contrary to myths and harmful stereotypes about autism, most autistic people love having friends.
“Autistic people overwhelmingly report that they want friends. And they have shown that they can and do form friendships with both neurotypical and autistic peers.”
I tend to have a few close friends with whom I’m extremely honest and open. In other words, my friendships tend to be very intimate. Since my connection with my friends is quite deep, I tend to get a lot more out of my friendships than others might.
Most of my friends are neurodiverse (autistic, ADHD, or Tourette’s, etc.) — either diagnosed or considering assessment. Neurodivergent brains tend to attract each other (whether or not they know they are neurodivergent!), and I have found this to be true both in friendships and romantic relationships.
4) Eidetic memory
Another term for eidetic memory is “photographic memory.” This ability has helped me remember facts or information when I need it most. If I look long enough at a page in a Biology textbook, for example, I’m able to see that page in my mind when it comes to answering a question on a test.
My eidetic memory is not perfect, but it often comes in handy. While some non-autistic people have eidetic memory, I’ve heard that it’s more common in autistic people.
5) Attention to detail
At school and at work, my attention to detail has served me well. I tend to notice things that others don’t, and discrepancies stand out to me very clearly — whether it’s an extra space between words on a page or an inefficient process in a workplace. It’s almost like my mind can’t NOT see it.
The best thing about this ability is that I don’t have to try hard, it’s just there! It also forms the basis for effective problem-solving.
In sum, autism makes my life pretty amazing, and I would never want to be rid of it. Yes, there are some very real challenges that often come with autism, such as co-occurring mental and physical health conditions. But, all things considered, I think the benefits outweigh the challenges.
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For many adults who identify as female, a late or adult autism diagnosis has several benefits. Many newly diagnosed autistic women say their diagnosis brought newfound self-understanding and self-compassion. But their diagnosis did not erase years of damage from living in a world that is hostile towards neurodiversity. Even armed with their newfound knowledge and understanding, many autistic adults continue to struggle in some key ways.
This is what Toronto therapist, Dori Zener, found after working with autistic teens and adults for over 10 years. She outlines a therapeutic approach called INVEST (Identify Needs, Validate, Educate, Strengthen and Thrive) in Advances in Autism.
Here are some issues commonly experienced by newly diagnosed autistic women:
1) Low self-worth
Self-worth is one of the main areas where autistic women continue to struggle. They may have been diagnosed and welcomed into the autism community, but a lifetime of not fitting in has a major impact on how they feel about themselves.
“Their self-worth is eroded from a lifetime of being treated as if who they are and how they behave is odd or intolerable to others. … Many express the mental strain they have experienced from the cumulative effects of living with unsupported needs due to unidentified autism — mental health challenges, issues with self-worth, self-esteem and fatigue.”
Even those who did not experience blatant cruelty or bullying on account of their differences were likely teased, left out of social functions, barred from work or school opportunities, and so on. Since females on the spectrum tend to be hyperaware of these slights, the effects can build up and exacerbate trauma or even lead to trauma disorders over time.
Issues with self-worth can keep the autistic person from getting close to or trusting others. The individual may have developed deeply engrained avoidant behaviours as a way to protect themselves from getting hurt. This is especially true if the autistic person was victimized in the past. (The majority of autistic women have been victimized, often multiple times.)
“Intense empathy and a drive to help others can attract unsafe romantic partners. All-or-nothing thinking can blind autistics from recognizing undesirable and harmful traits [in others].”
While these avoidant behaviours may indeed protect the autistic person, they can also get in the way of forming friendships and can lead to loneliness and social isolation.
2) Ongoing sensory sensitivities
While sensory sensitivity is not included in the DSM-5 criteria for autism diagnosis, it’s well-known that sensory issues are a key feature of autism. Sensory hyperreactivity seems to be especially pronounced in autistic females, so much so that many claim sensory issues are the defining feature of their autism.
Having an autism diagnosis often helps the autistic individual understand their sensory differences and challenges, but more support is often required to help reduce the impact of sensory issues.
“Autistic women seek therapy because they want a greater understanding of their unique autism profile and how they can function in this world without getting confused, overwhelmed and drained. They want to improve their day to day lives by learning strategies to enhance their executive functioning and minimize the impact of sensory bombardment.”
Sensory sensitivities are hardwired in the brain, and therefore cannot be changed. However, there are many changes a person can make to their physical surroundings (at home and at work) to help reduce the constant onslaught to their systems.
Being hyperreactive to sensory stimuli can be incredibly enjoyable. Autistic people often notice aspects of the environment that others miss, and they often react more strongly to art, music, and beauty in general. Once overwhelming or painful stimuli have been reduced or removed from an autistic person’s environment, efforts can be made to increase enjoyable stimuli.
3) Hyper-empathy
“Autistic women have been referred to as empaths and emotional sponges because they feel things deeply and pick up on the emotions of others on an affective level. … Difficulties sorting and processing multiple emotions intensifies distress and creates an additional layer of emotional anguish.”
Just as with sensory sensitivities, the ability to read others emotionally can be profoundly rewarding for autistic people. It can lead to greater intimacy with others, a new career in a helping profession (such as in psychology or social work), and deep insight into the human condition. But it also has the ability to overwhelm, create anxiety, and send stress levels through the roof.
Autistic people often need assistance in creating healthy boundaries that help invite or retain positive and rewarding social interactions and keep negative and unhealthy social interactions out. Without this, the burden of carrying other people’s emotions and emotional states can lead to significant distress and even physical and mental illness.
Due to the above ongoing issues, it’s important that newly diagnosed autistic women seek therapy or counselling with a trusted psychologist or therapist. Ideally, the therapist is autistic themselves or highly experienced in working with adult autistic individuals. Some therapists use the phrase “neurodiversity affirming therapy” on their websites to indicate that they work from a strengths-based and pro-autism approach.
“The goal is not to help individuals become more neurotypical, rather it is about accepting and embracing one’s autism.”
In my opinion, the preferred language is “autistic person”. When I was first diagnosed as autistic at the age of 38 (two days before my 39th birthday), I was unsure about this and didn’t know what to call myself. Now, I absolutely prefer identity first language — “autistic person”. It now seems strange to me when I hear or read “person with autism”, though I have heard that a minority of folks on the spectrum continue to prefer “person with autism”.
Why do I prefer identity first language? Autism is not an addendum unto myself. It is not an illness or something of which I’m trying to rid myself. I am autistic. Autism pervades my entire being and without it I would not be me.
Identity first language means that I am not looking for treatment or a cure for my autism. I am accepting myself for who I am, no questions asked. Autism is a different neurotype, not a disease or illness, nor is it something to be ashamed of.
Identity first language is “favoured by many autistic people” and “reflects the belief that being autistic is a core part of a person’s identity.”
The trend of using person-first language, such as saying “person with autism”, had good intentions in that it tried to put the person first instead of their disability. But imbedded in this approach is a very negative view of disability. It assumes that the person should be ashamed to be defined by their disability, or, at the very least, that the person wishes to one day be rid of their disability.
Person-first language has had some unintended consequences. For some, it implied a negative value to disability. We don’t use person-first language when traits are highly valued. For example, we don’t say, “Person with intelligence,” we say, “She’s an intelligent person.”
In embracing identity first language, we are expressing our pride for who we are. We refuse to accept the deficit model of autism, which paints autism as a burden or something unwanted. When it comes to autism, it is my opinion that you can’t use person-first language unless you’ve internalized the deficit model of autism, at least to some degree.
What do you think? Leave your comment below.
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The materials used to diagnose autism are biased towards male presentations of autism. This means that autistic males are far more likely to receive an autism diagnosis than autistic females.
Undiagnosed autistic females are more likely to be described as highly sensitive, shy, depressed, or diagnosed with conditions such as borderline personality disorder (BPD), bipolar disorder, and other mental health conditions.
Autism is not a mental health condition
Autism is a genetic neurodevelopmental difference. Many autistic people experience mental health conditions, either as a part of being autistic or because of the difficulties autistic people experience growing up and surviving in a world that is often hostile to autistic bodies and brains.
Autism scholarship is inherently biased and many healthcare practitioners are not trained to recognize autism in females.
Autistic females with average or above average intelligence (IQ) are most likely to go undiagnosed “causing them to miss crucial support that may accompany a diagnosis and alleviate some of their struggle,” writes Dori Zener, a clinical social worker in Toronto, Ontario.
Undiagnosed autistic women are at risk for increased rates of anxiety, depression, suicidal ideation and suicide attempts, and other mental health concerns.
A deep sense of being different
“For women with unidentified autism, anxiety comes from knowing they are different, but not knowing exactly why or how.”
Perhaps the number one feature of autistic women who reach adulthood or even late adulthood without a diagnosis is an unrelenting feeling of being fundamentally different than their peers. They often describe feeling alien or incapable of being understood by others.
Many undiagnosed autistic women begin masking from a young age in order to try to fit in, and some do very well at this (to the point where no one, not even the best diagnostician, would be able to detect autism). Masking is almost always unconscious and the autistic girl often assumes that everyone has to put the same effort in to exist in the social world.
Some undiagnosed autistic girls function relatively well in school by being part of a small, close-knit group of likeminded friends. These friends may themselves be autistic or otherwise neurodiverse (e.g., ADHD, Tourette’s, etc.) which may explain the affinity they feel for one another. Autistic girls are often known to befriend those who experience rejection or bullying or who are otherwise seen as different by the majority. (They may themselves experience a great deal of bullying.)
Alternatively, the autistic girl may spend non-academic time pursuing hobbies or extra-curricular activities with an intensity not seen in her peers. Their enthusiastic participation may help further camouflage difficulties with social pursuits.
Some autistic girls have been known to be deeply committed ballerinas, athletes, musicians, artists, actors, and so on — pursuits that cut into class time or time at school and/or time that would otherwise be spent socializing with peers. Their social differences are therefore often chalked up to their intense talents or passions.
The profile of an autistic girl with average or above average intelligence is often very different from the typical profile of an autistic boy or an autistic individual with below average IQ. She may be seen as gifted, shy, eccentric, depressed, and/or uniquely talented.
Whether or not an autistic girl is able to develop friendships with relative ease, they continue to mask and camouflage to fit in — often with disastrous results.
“Masking can be detrimental to a person’s sense of self,” says Zener.
“[Masking] communicates inwardly that their true self is flawed and needs to be concealed or altered. Frequently this leads to identity crises, because after years of piling on layers of camouflage they are left wondering who they really are …
“Years of rote learning and mimicry permits them to pass as neurotypical, but this incessant extensive posturing leads to significant fatigue and mental strain. Their minds are full at the end of each day, trying to make sense of all of the conversations that took place and wishing they had made a different contribution. Overload can be lessened through social withdrawal and sensory deprivation, such as baths, dark quiet rooms, immersion into intense interests” and so on. — Dori Zener
Undiagnosed autistic women often graduate high school. Those from privileged backgrounds may complete college or university with relative ease and go on to complete advanced degrees. In the right environment, with the right familial and financial supports, they can excel.
Deep thinkers, deep feelers
Autistic women, however, whether diagnosed or not and even with the substantial benefits that privilege may bestow, often struggle tremendously.
They feel more strongly than most (for better or worse), need more time to process thoughts and emotions, second-guess themselves constantly, and — due to their tendency to be people pleasers and their inability to detect nefarious motives in real time — are often the targets of bullying and abuse at the hands of unscrupulous individuals.
Their tendency to ruminate and process information and stimuli very deeply leads to the tendency to develop PTSD more often and more easily than their non-autistic peers. This also means that autistic women are more susceptible to developing mental health conditions such as depression, anxiety, trauma disorders, and other co-occurring conditions.
Autistic women have a very high risk of developing suicidal ideation, eating disorders, and stress-related health conditions. Many report feeling suicidal by late childhood or their early teen years. Lack of diagnosis only further increases the severity of these conditions and the likelihood of developing suicidal ideation and suicide attempts.
Many autistic women who are diagnosed as autistic in adulthood report that their diagnoses brought a deeper sense of self-understanding and self-compassion.
Am I autistic?
If you think you might be autistic, here are some things to think about:
Explore the process of getting a diagnosis or autism assessment. This process will differ from state to state, province to province, and country to country. The number one thing to look for in a healthcare provider is whether they have experience and training in diagnosing autism in adult women or those who identify as female.
Connect online with members of the autism community and ask questions. Facebook in particular has many groups to choose from, many of which are private.
Ask parents, extended family, and family friends about how you were as a baby, toddler, and child. Autism does not suddenly develop or show up in later life; autistic people are born autistic, meaning that autistic traits exist from day one. Many autistic females develop normally (i.e., they generally meet developmental milestones on time), but all autistic people will have marked sensory differences: they will be either overly sensitive to sensory stimuli (textures, noise, bright light, touch, etc.) or under-responsive. Many of these sensory differences may be evident from the first days or months of life.
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The Other Autism 