Last month, I had the opportunity to be a guest on the Oasis podcast based in Singapore. I spoke with Joanna Ng about my experience getting diagnosed with autism as an adult. We also talked about what others might look for when considering a diagnosis and how we can make life a bit easier for autistic folks.
Our discussion was made into a written Q&A and a section was used as a podcast episode. Read and listen here: Autistic people have empathy, too says Kristen Hovet of The Other Autism.
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.”Dori Zener
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].”Dori Zener
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.”Dori Zener
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.
“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.”Dori Zener
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.”Dori Zener
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.”Autism Awareness Australia
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.”The Asperger/Autism Network (AANE)
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.
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.
Why are so many autistic women not being diagnosed?
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.
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.”Dori Zener
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.
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. The group I started can be found here.
- 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.
A couple weeks ago, I published a story on Medium titled, Dear Sia, You Might Be Autistic. The response has been massive and I wasn’t expecting it.
Let me know your thoughts.
Many girls, women, and those assigned female at birth (afab) are diagnosed much later in life than their male peers. While this is slowly starting to change, many healthcare professionals — including therapists, psychologists, psychiatrists, doctors, nurses, social workers, and so on — are not well-trained to recognize less obvious presentations of autism.
Once called high-functioning autism or Asperger syndrome, “level one” or “mild” autism can be particularly difficult to diagnose — unless you know what to look for.
Identifying with any or all of the following does not necessarily mean that you are autistic. Autism is a genetic neurodevelopmental difference, meaning that you are born with it. You cannot “catch” autism or develop it later in life. If you are autistic, you would have had signs of autism as a baby and young child.
Here are 5 signs that you might be on the spectrum:
1) You were labelled as “Highly Sensitive”
Elaine Aron coined the term “Highly Sensitive Person” or HSP to describe someone with a unique cluster of emotional, physical, and sensory sensitivities. Her description has led many to wonder about the similarities between HSPs and those who are autistic.
People who exhibit the Highly Sensitive Person trait:
- Are easily overwhelmed by sensory stimuli (bright lights, rough fabrics, loud sounds, etc.),
- Are highly affected by the moods of others,
- Experience very strong emotions (both positive and negative) and have a rich emotional life,
- Are highly conscientious and detail-oriented,
- Have a difficult time coping with change,
- Love to learn for the sake of learning,
- Require a lot of time alone in order to recharge,
- Get sick easily (especially when a lot is going on in life or after travel), take a long time to heal or “reset” after a traumatic or upsetting event,
- Dislike small talk but can pretend to like it when “necessary”,
- Can exhibit startlingly intense focus on subjects and tasks that they love (i.e., special interests), and so on.
Aron, who also identifies as a “Highly Sensitive Person,” is very likely describing a large group of characteristics of autistic people, and specifically autistic people with so-called “mild” or “level one” autism.
(Aron was emailed for this article about HSP and autism, but never responded. Her avoidance of the autism community and unwillingness to properly address questions about HSP and autism is unfortunate, since her work could help destigmatize autism and challenge the deficit model of autism. She presents the HSP trait as being a great yet challenging gift.)
2) You prefer a lot of time alone or with only one person at a time
Autistic women and girls were typically labelled loners in childhood. They may have shown major interest in and love for people starting early in life, but could only take being in the presence of others in small doses.
This is not because autistic people hate or dislike others. Being around several people can be overwhelming both sensorily and cognitively for an autistic person, so they need a lot of time alone to recharge and pursue their special interests. People who are not autistic are usually not as interested in certain topics to the same extent and may even tease or bully the autistic person because of their deep curiosity and interests.
Autistic people often experience bullying or cruel teasing starting early in life, so they learned that it was easier and more calming to spend time away from others. This often gives others the perception that the autistic person is shy or introverted or strange. While many autistic people do identify as being introverted, some autistic people are actually extroverted, love to talk, and are energized from being around others.
Autistic people DO have friends and create STRONG BONDS with their loved ones. Some autistic people experience friendships and relationships more intensely than non-autistic people.
Most autistic people are fine being alone for long periods, and when they are with friends the discussion tends to be complex and deep (often philosophical in nature, examining the “big” questions). And when discussion is not the focus, autistic folks love to partake in their special interests with their friends.
Conversations with more than one or two other people can be overwhelming for autistic people. Their brains notice and take in more detail, and thus are more easily overwhelmed. For this reason, autistic people tend to prefer hanging out with only one or two other people.
3) You likely work in — or have special interest in — art, psychology, and/or science
Autistic females, in particular, are often very imaginative, artistic, and highly capable in the arts. This can include interest and talent in writing, painting, drawing, sculpture, singing, acting, theatre, music, and so on.
Autistic brains tend to be very detail-oriented, leading to a tendency to be very good at science and analytical thinking. Whether or not an autistic person ends up in the sciences (and especially a career in science) largely depends on their upbringing and influences. Those who had the advantage of receiving good education and had the resources to attend post-secondary school often excel in academia.
One common area of interest for many autistic females is in psychology. Since they grew up feeling different from everyone else, they often look to psychology for answers — often reading self-help books and psychology texts long before their peers. For many, this leads to independent study and the development of a special interest in psychology.
Several choose careers that are related to psychology in some way, either as researchers, psychologists, therapists, school counsellors, or social workers.
While autistic people can be interested in a diverse range of career fields, they are over-represented in the arts, sciences, technology, and in psychology. Their traits and strengths may be especially well-suited for academia, and many find themselves to be lifelong learners — interested in pursuing formal and/or informal educational opportunities throughout life.
4) You have probably been diagnosed with anxiety, depression, PTSD, BPD, or similar
Late-diagnosed autistic females are often first diagnosed — or misdiagnosed — with anxiety, depression, post-traumatic stress disorder (PTSD), borderline personality disorder (BPD), bipolar disorder, obsessive-compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD), eating disorders, and/or phobias.
Even after significant amounts of therapy and receiving these kinds of diagnoses, the undiagnosed autistic person often feels that something is still missing. They may keep jumping from one therapist to the next, but without showing significant improvement or increased satisfaction with life. Suicide ideation and suicide attempts are very common in the female autistic population.
Unfortunately, many healthcare professionals — including therapists and those who specialize in autism assessments — do not receive enough education or training to be able to identify more “mild” presentations of autism. For this reason, autistic women are usually not diagnosed until adulthood. Their difficulty with fitting in, lack of answers, and lack of understanding from others often leads to the development of mental health concerns.
While these diagnoses may be correct and can overlap with autism, they are all too often incorrect or partial. They do not represent the full scope of what the individual is going through.
5) You have a high chance of having allergies, autoimmune disorders, fibromyalgia, and/or connective tissue disorders
For many women and girls, an autism diagnosis is preceded by a long history of health issues. Many have digestive problems, connective tissue disorders like Ehlers Danlos syndrome (hypermobile type), food and environmental allergies, and autoimmune disorders.
Many late diagnosed autistic individuals were diagnosed as having irritable bowel syndrome (IBS) or fibromyalgia on account of having frequent gastrointestinal issues and chronic pain, respectively.
A recent study found that autistic people have a much higher rate of the most common autoimmune disorders, with psoriasis appearing far more often in autistic people than in non-autistic people.
I think I might be autistic. What now?
If you think you might be autistic, find a psychologist in your area who specializes in autism diagnosis. If you are female, assigned female at birth, or identify as female, be sure to find a psychologist who has significant training and experience in diagnosing autism in females, women, and girls.