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.

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.

What to do when you have trouble switching from one task to the next

Autistic people almost always have executive function issues of one kind or another. Executive function involves cognitive or brain-based processes such as short-term or working memory, choosing what to pay attention to and what to ignore, and switching between different tasks.

Executive function is responsible for the ability to:

  • pay attention
  • regulate emotions
  • start and finish tasks
  • avoid distractions
  • organize and prioritize actions
  • reach goals by following steps, and so on

“In simplest terms, Executive Function means the ability to get stuff done (homework, writing a paper or cleaning a room, etc.). In other words, to execute​ complex tasks through to completion.”

Seth Perler

Additionally, executive function processes are associated with activities that are future-oriented or goal-oriented. These activities often involve following a set of steps or processes.

The pros and cons of executive function challenges in autism

Abilities associated with executive function tend to improve with age, but autistic people have executive function “problems” or difficulties for our entire lives. In some cases, however, our executive functioning differences can actually be beneficial or can be seen as special abilities. Many of us can focus for hours on one subject or task — like building a website or writing a book.

These abilities can serve us very well and lead to success or hyper-functioning. Many autistic people are overachievers in their fields, partly because of their ability to intensely persist at tasks or activities and sustain nearly unwavering attention.

Executive function challenges or differences are not helpful when we sacrifice our wellbeing in order to continue what we’re working on, or when we have trouble prioritizing between specific tasks. We might choose the task that is more interesting over the one that needs to get done more quickly, but not realize in the moment that we are neglecting a task that needs to get done right away.

Executive function issues and neglecting the self

Conversely, some of us become fixated on tasks that we think we should do over those we want to do, meaning we rarely practice self-care or set aside time to do the things that are most enjoyable, relieve stress, and promote wellness. This might mean doing housework until we’re exhausted and neglecting to do activities that we love or that give us joy.

This may have disastrous real world consequences — lost jobs or angry employers, missed appointments, interpersonal difficulties and misunderstandings, development of stress-related illnesses, insomnia, etc. — and can become a big problem… unless we learn ways to work with our executive function differences.

My personal experience with executive function challenges

The executive function difficulty that is the most challenging for me is task switching. I’ll get so into a research topic or a writing or work project that I have a very hard time moving on to the next task, even if the next task is also interesting or enjoyable. As an autistic person, I benefit immensely from the hyper-focus that I often experience, as I get extreme pleasure and satisfaction from hyper-focusing on topics, activities, or tasks that I love. This makes it even harder, though, to stop doing them!

In school, I almost always handed my homework in on time, my work was neat and tidy, and I was a “teacher’s pet.” This is common for many (but certainly not all!) girls with “level 1” autism where there is no intellectual disability. This did not mean it was easy for me, though. I had a lot of interests to keep up with, all of which competed with homework and studying. I had extracurricular activities after school many days of the week and then I’d come home and read books or write poetry or surf the web. Some nights I wouldn’t start schoolwork until midnight, then I’d go to school nearly sleepless the next day.

This was not a rare occasion, but something that became habitual. The lack of sleep and overworking were not sustainable. I began to feel the effects on my body and mind, especially as I got older.

Learning how to use a daily planner was a gamechanger! Building it into my routine was even more important.

The simple tool that helped me

My goal is not to change who I am. I am quite happy with my brain the way it works and I like the benefits of having this particular set of executive function differences. That said, I want to make the best use of them.

I was gifted a daily planner in high school, and this was a gamechanger for me. I recall that the planner was refillable, came with a pen that matched the cover, and included a list of tips on how to enter information. I quickly set about planning my days and setting out goals and what I wanted to accomplish throughout the day, week, month, and even the year.

For whatever reason, this had not been taught to me before in such a clear and precise way. I benefit most from clear, step-be-step guides, and I just had not been taught how to plan my day before. Ever since that first daily planner, I haven’t been without one since.

Using a daily planner takes getting used to if you haven’t used one before. By far the most important thing in using a daily planner is establishing a routine and sticking to it each and every day. The best way to use a daily planner is to sit down mindfully in the morning either before or after breakfast. Make the process as enjoyable and as peaceful as possible.

I like to sit with a cup of coffee and my daily planner at the breakfast table.

Here is my process:
  1. Identify the three things that need to get done today.
  2. Prioritize which task needs to get done first — usually the one with the nearest deadline or the one I like least.
  3. Schedule my day by blocking out 2-4 hours for each task.
  4. Make notes, doodle, or jot down ideas that help me focus or remember other things I need to do or get done.
  5. Since I’m very visual, using highlighters and different ink colours is helpful in sorting the information and drawing my eye to the most important appointments and tasks.
  6. Cross out items as I complete them.
  7. End my work day as planned so that I have time for exercise or an enjoyable activity.

References and further reading

Demetriou, E. A., Demayo, M. M., & Guastella, A. J. (2019). Executive function in autism spectrum disorder: History, theoretical models, empirical findings, and potential as an endophenotype. Frontiers in Psychiatry, 10(753).

Johnston, K., Murray, K., Spain, D., Walker, I., & Russell, A. (2019). Executive function: Cognition and behaviour in adults with autism spectrum disorders (ASD). Journal of Autism and Developmental Disorders, 49, 4181-4192.

Perler, S. (n.d.). What is executive functioning? How does it affect my child? Seth Perler.

Why do some autistic people seem self-absorbed?

A common and sometimes unspoken myth about autistic individuals is that they are self-absorbed. Some non-autistic folks complain that the autistic people in their lives always find a way to turn the conversation back to themselves. Others imply or state outright that autistic people are egocentric or even narcissistic.

The myth is deeply rooted in autism’s history and involves misunderstandings of the different ways that many autistic people think, socialize, and experience the self.

While an autistic person’s ways of relating to others and to the world around them may appear self-centered or self-absorbed, egocentricity and preoccupation with oneself are not characteristics of autism. In fact, more often than not, an autistic person living in a neurotypical world has low self-esteem and does not always have a strongly formed self-concept.

Let’s look at three reasons for the development of the self-absorbed autistic person stereotype.

1) The idea of autistic self-absorption dates back to the origin of autism

The word autism has “self” built right into it, so this stereotype is rooted in the very beginning of the concept of autism. The Swiss psychiatrist, Paul Bleuler, coined the New Latin term autismus around 1910 to describe what were mistakenly thought to be symptoms of schizophrenia.

“Autism” comes from the Greek autos, meaning “self” while ismos refers to an action or state of being. So “autism” literally means a kind of intense self-absorption.

Bleuler meant for “autism” to refer to “autistic withdrawal of the patient to his fantasies, against which any influence from outside becomes an intolerable disturbance.”

2) This myth, like many autism myths, is based on incorrect judgments of autistic behaviour

Unfortunately, Bleuler’s notion of autism continues to inform views on autism today. And like many other incorrect or over-simplified ideas about autism, it is based on a non-autistic person’s judgment of autistic behaviours and says nothing about the reasons behind the behaviours themselves.

Autistic people, while usually described as introverted and tending to get “lost in their own world,” can be extroverted and quite socially-motivated. And those who retreat inward do so because they are overwhelmed by the sights and sounds of the world around them. Autistic brains are built for deep, detail-oriented processing of information and do not focus on one or two main stimuli in the way that non-autistic brains do. There are pros and cons to both forms of information processing, yet we live in a world that far prefers the second way.

As a result, social and cultural events, entertainment, and even cities themselves are designed with the non-autistic brain in mind. This often leads to an environment that is too loud, too bright, too harsh, too hectic, and too fast-paced to allow for a sense of safety and equanimity for autistic people.

In short, the need to retreat is triggered far more quickly and easily for most autistic people when compared to non-autistic people. This leads to behaviours often seen by non-autistic people as “running away to their own world.” While a non-autistic person might see “self-absorption” in this tendency to retreat, the autistic person finds deep, almost meditative focus and a rich cognitive landscape when they are alone or with a small group of close friends.

Retreating to their studies or special interests is often experienced by autistic people as comforting, even blissful, and intensely satisfying. Many autistic individuals are also often driven by an altruistic desire to help humanity, and their special interests may be in medicine, psychology, science, social justice, engineering, or other topics that they wish to help improve for the benefit of all.

3) The autistic self-concept is often very different than the non-autistic self-concept

Imagine a scenario where two people are having a conversation — one individual is non-autistic while the other individual is autistic. The non-autistic person might describe a difficult situation they have recently experienced, perhaps in at attempt to receive advice or just a listening ear.

While many autistic individuals are described as wonderful listeners, and indeed many autistic people end up in helping professions that require finely tuned listening skills — like therapists, psychologists, and social workers — some are more inclined to share their own stories or anecdotes in response. For example, autistic individuals might respond by talking about a time when something similar happened to them.

This may come across as turning the conversation and attention away from the non-autistic person and toward the autistic person, but this is almost never the intention or motivation of the autistic person.

For the autistic person, the self is often viewed more objectively, as an object that can be held up for close examination or as a kind of ongoing qualitative experiment. And they often study their experiences (or the cognitive and emotional impressions resulting from those experiences) very carefully, analytically, and with more attention to detail than non-autistic people are accustomed to.

Autistic people would likely speak just as passionately about the experiences of others if they had the same level of direct experiential insight into others’ lives and minds as the autistic person does with their own.

In most non-autistic circles, however, being so analytical about the self or being overly forthcoming with one’s life experiences is seen as odd, unwanted, or…self-absorbed.

As with most things, it’s all about perspective.