Autism and mast cell activation syndrome
Today, we’re talking about mast cell activation syndrome and autism — is there an overlap?
I want to start by saying I’m not a doctor. Though I am a Master of Health Studies student, anything I say here and and in my other posts should not be taken as medical advice. If you’re wondering about mast cell activation syndrome, if you’re thinking you might have it, I suggest going to your doctor and asking for a referral to an immunologist.
I also wanted to let you know that below, I’ll be putting a list of personal care products that I used today — items and products that I have found have been safe for me as someone with mast cell activation issues and a lot of sensory sensitivities associated with being autistic. If you click through to the items below, I may get a small commission if you actually make a purchase. Anything I make from these commissions will help cover the costs of this website and the time spent researching, writing posts, and making videos.
It’s fairly widely known that autistic individuals usually have some kind of allergy or food intolerance or many allergies and many food intolerances! And the other thing that’s common is gastrointestinal symptoms, gastrointestinal problems. These are so common in autistic folks. Sometimes, these are true allergies and sometimes they’re unexplained reactions that are labelled as intolerances.
One study I read found that about 70% of the autistic people they studied had some type of allergy or dermatitis or rhinitis or asthma, compared to only 7% of age-matched non-autistic people.
When I talked above about how autistic people can often have intolerances — these are called intolerances because they’re not true allergies. Now, this doesn’t mean that they’re any less real or serious than allergies; it just means these intolerances result from different biological pathways than allergies.
To cope with these intolerances, autistic people often just have to avoid the things that they suspect caused their reactions, and unfortunately some people don’t ever make the connection. Maybe they react to just too many things, and so they can’t ever quite pinpoint what it is.
There’s no test. The only thing you can do is try an elimination diet, where you reduce your diet and exposure to almost zero and slowly build up, adding one thing at a time. So if the problem is food, just eat plain rice and then slowly add one ingredient every day. If you react, you can safely potentially say, “That’s what I’m reacting to,” and then try it again to repeat your results, to see if that’s the thing you’re reacting to. It’s best to try elimination diets under the supervision of a qualified healthcare professional, especially if your allergies and reactions are severe.
Unfortunately, there are no reliable, evidence-based tests you can take to test for food intolerances or other intolerances, and that’s why it’s so frustrating for so many people!
Mast cell activation syndrome
Some research indicates that these intolerances or reactions could in fact be an underlying mast cell activation syndrome, or at the very least, just some really hypersensitive mast cells, leaving the person more likely to respond to certain substances in the food they eat or in the products they use on a daily basis.
Mast cells are involved in gastrointestinal problems and in inflammation, and could explain why so many autistic individuals have gastrointestinal problems.
You might be wondering, “What is mast cell activation syndrome?”
It’s a condition where, for whatever reason, a person’s mast cells release their contents way too easily and then when they do, it’s kinda like, blaaahhh, all at once, everywhere! It’s a mess! This release is responsible for the allergy-like symptoms that so many people with this disorder or condition experience.
Since mast cells are located in so many parts of the body — like the GI tract, the skin, the lungs, the bones — it means that the symptoms are often systemic. They cover so much of the body, so it can be so hard to diagnose.
Mast cells are blood cells that are involved in the immune response. Basically, they help protect your body from pathogens. Symptoms of mast cell activation syndrome include itchy skin — with or without rash, edema or swelling right underneath the skin (I get some hecka swelling under my eyes!), skin flushing where it looks like your skin is a bit red and can be on your face or your chest or your stomach, muscle pains, mucus buildup, headaches that are so bad that they almost feel like migraines, difficulty breathing, hives (omg, if I’m not taking my medicine, I can get hives on my face including on my eyelids swelling up to the point of looking like another eyelid!), upset stomach, bloating, diarrhea, constipation, or both diarrhea and constipation, nausea, heart palpitations, low blood pressure, or high blood pressure then low blood pressure, fainting or near fainting (also called syncope or near syncope), hot flashes that are not related to menopause, trouble thinking or focusing, and even chronic pain.
There’s a HUGE list of symptoms associated with mast cell activation syndrome! It’s really annoying!
My diagnoses
As far as my own experience goes, I often had stomach aches and puffy eyes when I was a kid. I would get issues with my stomach and it was not really explained. There were really no reasons for it that we knew of. Potentially stress; I was a stressed out little kid, but the symptoms were there even when things were going well.
Then in high school the symptoms got a bit worse. I started getting really bad insomnia and, looking back, I was definitely reacting to certain things that I was consuming or using, and not really knowing it. At that age, if this was something you were born with and only gradually got worse over time, it just feels normal. You don’t know anything different.
But, it gradually got worse and worse and worse until my early 30s, when I could barely leave the house. My symptoms were so bad. At one point, I was down to around five safe foods, and that was it. I had no idea what was going on.
And doctors were no help, unfortunately. I love medicine and I love healthcare, but doctors were the opposite of helpful. They would often focus on one symptom. “Oh, you have headaches? Let me give you this medication! Oh you have stomach pain? Let me give you Pepto-Bismol!”
Pepto-Bismol, which contains bismuth subsalicylate, is the worst thing you can give someone, by the way, who ends up reacting to salicylates or salicylic acid, which is one trigger that can be seen in mast cell activation syndrome! I didn’t know that then! I ended up in the emergency room that day. It was “fun”!
Once, I went into the clinic because I was having some kind of reaction but had no idea what I was reacting to. There was really no rhyme or reason, because there are so many things that can cause reactions, there are so many things that are potential triggers of mast cells, and everyone is a bit different in terms of what triggers their mast cells.
Anyway, I was reacting to something. Maybe it was seafood. Seafood is bad! High histamines! Whatever it was, it was causing heart palpitations and high blood pressure. At that moment, when I went into the clinic, I had super high blood pressure. It was 160-something over something — it was bad. They waited for a while, and then kept retaking my blood pressure. Finally, they were like, “Listen, your blood pressure is not going down. We have to give you beta blockers.”
I was prescribed beta blockers and I was only 26 or 27 years old. Clearly, my heart was not my issue. But at the time, because doctors are trained to measure and treat symptoms, that’s what they did. Never any exploring the underlying issue. Not many doctors are trained to recognize mast cell activation syndrome. They might be trained to recognize mastocytosis, which is a similar but very different disorder that is when the body creates way extra mast cells. It can be fatal.
Salicylates and histamine
Finally, I went to see an immunologist. He had done a bunch of allergy tests and the tests showed that I was allergic to things that weren’t really shocking. I was allergic to birch, alder, grasses, and that was pretty much it. And then he was asking me, “Go over the last couple emergency visits that you had. What led up to those? What were you doing? What were you taking? What were you eating?”
And then I mentioned the Pepto-Bismol and that it had caused one of the worst reactions of my life. And he said, “Oh! You could be reacting to salicylic acid, or salicylates.”
And that just stuck in my head. That’s all he said. Unfortunately, he didn’t really elaborate much. So I went home and Googled that and I read something that said a person who reacts to salicylic acid or salicylates can also react to naturally occurring salicylates in foods, most commonly in certain vegetables and spices and also certain flavourings and preservatives in packaged food. This was all later confirmed with my immunologist at my next appointment.
At that point, I had already tried doing various elimination-style diets with not much success, and finally I tried eliminating salicylates and when I was reading about salicylates, I also read about histamines in foods. So I went on a diet that reduced both of those things — salicylates and histamines.
Within literally not even a full day or day and a half, I was feeling like a completely new person! Like what?!?!?!
Are we dealing with an entirely separate condition?
Fast forward to seven or eight years later, I get my autism diagnosis. Shortly after that, a few months later, I’m diagnosed with hypermobile Ehlers-Danlos syndrome.
When I’m talking to the geneticist who diagnosed me, I tell her my history of other conditions and other things about me, and she says, “Yeah, you know what? We doctors are recognizing that there’s something interesting going on here. There’s some kind of overlap with mast cell activation syndrome and autism and hypermobile Ehlers-Danlos. This overlap happens so often,” she said, “that there could be some subtype of autism or some kind of condition all its own where these things are co-occurring.”
The other thing she mentioned was POTS — postural orthostatic tachycardia syndrome. I’ve never been tested for POTS. I don’t know if I have it. Maybe I do. I’ve been distracted by other medical things for the last…four decades…
Anyway, these conditions (autism, mast cell activation disorder or syndrome, hypermobile Ehlers-Danlos syndrome, and/or POTS) are so commonly seen together that they could comprise their own single diagnosis one day.
I’m kind of happy about this because it would explain so much. It would explain the fact that when I’m talking to other autistic people, either they have this collection of things (e.g., bendy joints, all the things with mast cells, etc.) or they don’t.
Mast cell activation syndrome is not something that you just get rid of or treat or cure, but there are things you can do to reduce the reactivity of mast cells, beyond just controlling your diet and controlling what products you use. Let me know if you’d be interested in hearing about the things I take and what I do to help stabilize my mast cells.
So there’s all these interesting overlaps. I’m really curious to see what researchers are going to find in the coming years. And I’ll be sure to share what I discover!
The above is the script for this video: Allergies, Food Issues, Autism, and Mast Cell Activation Syndrome! on my YouTube channel.
If you’d like to know more about this topic, check out:
Mast cell disorders in Ehlers-Danlos syndrome.
Mast cell activation and autism.
Idiopathic mast cell activation syndrome with associated salicylate intolerance.
New YouTube channel!
I’ve started a YouTube channel to discuss all things autism and chronic illness. Please join me!
My 5 favourite things about being autistic
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
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.”
Catherine Moore
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.”
Lydia Denworth
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.
Three issues facing newly diagnosed autistic women
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.
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.”
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
Autistic person or person with 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.”
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)
Autistic pride
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 challenging journey to female autism diagnosis
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.
- 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.
5 signs you may be an undiagnosed autistic woman
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.
Autistic females are very good at hiding their autism
We call this camouflaging.
Autistic camouflaging is when the person hides their autistic characteristics or traits so that they are less obvious to others, even though the autistic person is usually not aware that they are doing this.
“Camouflaging … is a bit like a chameleon changing the patterns on its skin to fit into the surroundings. The chameleon is still there, but it is trying to look like everything else around it.”
Laura Hull and Will Mandy
Camouflaging is most common in those with late-diagnosed autism. These individuals are usually not diagnosed until middle age or older adulthood — precisely on account of their ability to mask or camouflage particular behaviours and characteristics.
In other words, camouflaging often leads to delayed autism diagnosis.
“Jennifer [who was not diagnosed with autism until she was 45] … says she practices how to act. Before attending a birthday party with her son, for example, she prepares herself to be ‘on’, correcting her posture and habitual fidgeting. She demonstrates for me how she sits up straight and becomes still. Her face takes on a pleasant and engaged expression, one she might adopt during conversation with another parent.”
Francine Russo
It’s usually only after diagnosis that an autistic person becomes aware of their camouflaging tendencies, as they may have thought that the things they do to fit in is what everyone does when they socialize. Many will then seek to have more control over their tendency to camouflage, and several try to reduce the behaviour, so as to put less pressure and strain on themselves.
Camouflaging behaviour is highly correlated with mental health challenges and suicide.
Many individuals who are diagnosed as autistic in adulthood may not seem all that different to their peers or to people meeting them for the first time, but they feel very different inside. This perceived difference and feeling of otherness causes a great deal of suffering.
An autistic person’s ability to camouflage usually underlies the common experience of being told, “But you don’t look autistic!” when sharing news of their diagnosis with others.
Camouflaging for an autistic person takes tremendous energy and is often one of the main reasons that autistic people seem like hermits or “shy” introverts, when in fact not all autistic people are introverted. Contrary to common misconceptions, many (if not most) autistic people enjoy socializing and crave connections with others — just like almost everyone else on the planet — but socializing and interacting with others tends to require more energy for autistic people.
Most autistic people are unable to tune out or ignore sensory information — like sounds, sights, textures, tastes, smells — the way that neurotypicals (non-autistic people) can. This means that their brains work overtime to sort, process, interpret, and respond to all sensory information and incoming stimuli. The world for an autistic person is typically too loud, too bright, too itchy, too smelly, too uncomfortable, and very, very exhausting. They will need more time to themselves to rest and recharge.
“When I’m uncomfortable in a social situation because of too much noise and other stimulations, my desire is to escape or retreat quickly (and, as viewed by others, quite rudely) to a safe, quiet corner. But to avoid doing this, I grip my hands tightly together in front of me — really tightly. I crush the fingers of one hand with the other, to the point that it’s painful. Then I can concentrate on the pain and suppress the urge to run away, to be seen as rude.”
Vanessa Nirode
Add the need to camouflage to this near-constant state of sensory and cognitive overload, and any energy the autistic person has is quickly used up.
Camouflaging behaviours include:
- Making eye contact even when it might be uncomfortable;
- Forcing oneself to make small talk, even when not interested in this type of conversation;
- Talking to someone they actually aren’t interested in or may even be afraid of;
- Putting on a persona or copying behaviours, gestures, facial expressions, and vocal inflections of others so as to “fit in” or not stand out in particular social settings, etc.
- Some autistic people who are very “skilled” at camouflaging appear to others as incredibly socially skilled, extroverted, and even gregarious; many make great entertainers and several Hollywood stars, comedians, singers, models, and Broadway performers are on the spectrum.
While everyone, whether autistic or neurotypical, camouflages at times, many autistic individuals camouflage whenever they are in a social setting or around people they do not know well.
Why do autistic people camouflage?
- They have grown up being made to feel ashamed of their differences. They learned very early that their unique characteristics and traits are not acceptable or seem strange to most others. To avoid their judgment, disapproval, and/or anger and the resulting embarrassment and shame, autistic people learn to put on an act — to act like neurotypicals.
- Camouflaging “is often motivated by a sense of alienation and threat, and frequently represents an attempt to avoid ostracism and attacks,” which shows us “the pervasive difficulties of being autistic in a world that is shaped by the non-autistic majority.”
“Women and girls often have a natural drive to fit in socially, and so the symptoms they present with aren’t stereotypically ‘autistic’.”
Hannah, interviewed by Lucy Edwards
While several autistic males and females engage in camouflaging behaviour, evidence shows that it is more common in women, girls, and those assigned female at birth, possibly due to greater social pressures experienced by those who are female or feminine to be socially engaging, vivacious, and always accommodating and pleasing to others.
“Nearly everyone makes small adjustments to fit in better or conform to social norms, but camouflaging calls for constant and elaborate effort. It can help women with autism maintain their relationships and careers, but those gains often come at a heavy cost, including physical exhaustion and extreme anxiety.”
Francine Russo
Facts about undiagnosed autism (infographic)
Here’s the problem: the number of children diagnosed with autism today is far greater than the number of adults diagnosed with autism. The two numbers should match. This means, there are a lot of adults in need of diagnosis.
Sources:
Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., Kurzius-Spencer, M., Zahorodny, W., Robinson-Rosenberg, C., White, T., Durkin, M. S., Imm, P., Nikolaou, L., Yeargin-Allsopp, M., Lee, L. C., Harrington, R., Lopez, M., Fitzgerald, R. T., Hewitt, A., … & Dowling, N. F. (2018). Prevalence of Autism Spectrum Disorder among children aged 8 years. Surveillance Summaries, 67(6), 1-23. http://dx.doi.org/10.15585/mmwr.ss6706a1
Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal of Autism and Developmental Disorders, 46(10). doi:10.1007/s10803-016-2872-8
Cusack, J., Shaw, S., Spiers, J., & Sterry, R. (2016). Personal tragedies, public crisis: The urgent need for a national response to early death in autism. Autistica website. https://www.autistica.org.uk/downloads/files/Personal-tragedies-public-crisis-ONLINE.pdf
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