In memory of my brother.
“For life and death are one, even as the river and the sea are one.”
— Kahlil Gibran
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My son and brother. Jamie and I in Minot, North Dakota. Jamie and I in Mandan, North Dakota. Jamie Ronald Charles Timmreck, March 19, 1985–December 11, 2022
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If you love podcasts or need a different way to get information about late-diagnosed autism and the latest in autism research, check out The Other Autism on Buzzsprout or wherever you get your podcasts.
The Other Autism podcast is for autistic adults who have recently been diagnosed or think they may be autistic, and for anyone who wants to learn more about late-diagnosed autism or support autistic loved ones in their life.
The Other Autism explores late-diagnosed autism, discusses the latest in autism research, and dispels myths and stereotypes about autism and autistic people.
Looking forward to having you join me! If you’d like to submit questions to possibly be answered in a future episode, please email kristen.hovet@gmail.com
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It’s a fairly well-known fact in the autism community and in autism scholarship that if you’re autistic you probably also have PTSD or a considerable history with PTSD. And I’m not using PTSD as a euphemism for having a bit of trauma; I’m talking about the real, clinical diagnosis of post-traumatic stress disorder and all that that entails.
So, what does PTSD entail?
There are four categories of PTSD symptoms and, to receive a formal diagnosis, you need one or more symptoms from each of the four categories. The first category is intrusive symptoms such as unwanted memories or thoughts, recurrent nightmares about the trauma, reliving the trauma experience over and over again and not being able to control it, distress or troubling body sensations when reminded about aspects of the trauma, and so on. In short, there’s a real lack of control and it’s almost like the trauma is controlling you.
The second category is avoidance symptoms such as trying really hard to avoid thoughts, feelings, or memories related to the trauma, or refusing to talk to or even go anywhere near people who remind you of the perpetrator, if a person was the cause of the trauma.
The third category is negative changes in thinking or mood. This can include forgetting or blocking memories of the trauma, very negative beliefs about oneself and distorted beliefs about the trauma (such as, “It’s all my fault,” or “I caused this,” — really beating yourself up with these thoughts), decreased interest in activities that you’d normally find interesting, feeling detached and distant, and so on.
The fourth and final category is hyperarousal. This can include having outbursts at really little things, being easily startled, trouble sleeping, trouble concentrating, etc.
For autistic people, PTSD is extra-complicated. For us, PTSD is also associated with an increase in autism-related symptoms and traits such as an increase in stimming, an increase in meltdowns or shutdowns, an increase in self-injurious behaviour (or maybe we’ve never self-injured before but suddenly start to once PTSD sets in), increased hyperactivity, loss of self-care skills, and sometimes a loss of communication abilities. This can make it challenging to get the social support that we need. Social support is helpful in the prevention, management, and alleviation of PTSD.
Complex PTSD and autism
Also, even when autistic people are successfully treated for PTSD, they often develop it again. For many of us, trauma can build on trauma, on trauma, on trauma, for several years or decades leading to what has been called complex PTSD (C-PTSD), which has some differences in symptoms compared to PTSD, and is believed to be more difficult to treat.
Complex PTSD is typically associated with repeated or ongoing trauma. It’s important to note that C-PTSD is not yet a formal diagnosis in the DSM-5 — the Diagnostic and Statistical Manual of Mental Disorders, 5th edition, which is what’s used to diagnose mental illness in North America. Many experts think it will be added to a future edition of the DSM, and C-PTSD has already been added to the International Classification of Diseases, 11th edition (ICD-11).
From what I know about C-PTSD, it’s almost like the symptoms of PTSD turn into a kind of personality type. The trauma symptoms are so deeply ingrained and have been a part of the person’s life for so long that they become deeply foundational to the person’s psychological makeup and, I’d even say, to their physiological makeup. It really covers everything about their lives and their ability to trust others, relate to the world, be in touch with themselves and their own bodies — It’s a condition that affects the entire person.
I think that the existence of co-occurring autism and C-PTSD can lead to that common confusion between autism and PTSD. It’s really common for people on their journey to diagnosis — in other words, the prediagnosis stage of late-diagnosed autism — to wonder, “Hey, I have these symptoms and traits. Is it autism or is it PTSD?”
My answer? It’s probably both!
In this world (which is designed to best accommodate the neurotypical brain) and with our brains, I think it’s very unlikely to be autistic and not have some experience with PTSD.
Brain differences make it more likely that autistic people will develop PTSD
Do autistic people experience more trauma or are they more susceptible to developing PTSD as a result of trauma? It’s likely a combination of both. Autistic people and other neurodivergent individuals are more likely to be abused and bullied compared to neurotypicals, we’re often seen as easy targets by the predatory type, we’re often naïve and overly trusting (especially as children and teens), and this is the case whether or not other people know we’re autistic and whether or not we ourselves know we’re autistic.
Interpersonal trauma, like bullying and abuse, is associated with the development of PTSD, but not all who experience these things go on to develop PTSD. In fact, only about 20% of people who experience trauma develop PTSD.
Why do most autistic people develop PTSD in response to trauma? The answer appears to be in our brains.
The connection between our right and left hemispheres is smaller or doesn’t operate the same as it does in the neurotypical brain. This means that information, including trauma, does not get processed as quickly. While this attribute is associated with some of the best aspects of autism, such as being able to really deeply focus on certain subjects or tasks, it’s not great when it comes to trauma.
And, if you think about it, a lot of the autistic traits that we experience are, in part, associated with this fact. We are bombarded by external stimuli and information that comes in from our senses, we’re overwhelmed by our own thoughts and processes in our own minds, and when you combine these two attributes and the fact that the brain is trying to process all this information, it just gets stuck! There’s a bottleneck of information. Things don’t get processed properly or quickly enough.
Also, we autistics have more connectivity between neurons in each brain hemisphere, which can lead to fixating or perseverating on traumatic events initially, usually right after they happen and then continuing to do so long after the trauma has ended. This “looping” of the event — replaying and re-examining it over and over again in the mind — is one of the necessary conditions for developing PTSD in the first place.
In short, the above brain-based attributes create a fertile ground for PTSD to take root and grow.
If you’d like to know more about this topic, check out:
Complex post-traumatic stress disorder.
Traumatic stress disorder fact sheet, Sidran Institute.
Post traumatic stress disorder, Anxiety Canada.
The autistic brain and PTSD, Embrace Autism.
Relations between social support and PTSD symptoms.
Meltdowns and shutdowns, Embrace Autism.
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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.
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!
If you’d like to know more about this topic, check out:
Mast cell disorders in Ehlers-Danlos syndrome.
Mast cell activation and autism. The first author of this paper (Theoharides) is not a widely trusted source by the autism community or autism researchers in general, but this link is included here because unfortunately Theoharides’s work is some of the only and most widely cited literature on this topic. Theoharides supports autism cure dogma and other dangerous concepts about autism and the autistic community.
Idiopathic mast cell activation syndrome with associated salicylate intolerance.
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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.”
EmilyEmily’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 MooreGetting 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 DenworthI tend to have a few close friends with whom I’m extremely honest and open. In other words, my friendships tend to be very intimate. Since my connection with my friends is quite deep, I tend to get a lot more out of my friendships than others might.
Most of my friends are neurodiverse (autistic, ADHD, or Tourette’s, etc.) — either diagnosed or considering assessment. Neurodivergent brains tend to attract each other (whether or not they know they are neurodivergent!), and I have found this to be true both in friendships and romantic relationships.
4) Eidetic memory
Another term for eidetic memory is “photographic memory.” This ability has helped me remember facts or information when I need it most. If I look long enough at a page in a Biology textbook, for example, I’m able to see that page in my mind when it comes to answering a question on a test.
My eidetic memory is not perfect, but it often comes in handy. While some non-autistic people have eidetic memory, I’ve heard that it’s more common in autistic people.
5) Attention to detail
At school and at work, my attention to detail has served me well. I tend to notice things that others don’t, and discrepancies stand out to me very clearly — whether it’s an extra space between words on a page or an inefficient process in a workplace. It’s almost like my mind can’t NOT see it.
The best thing about this ability is that I don’t have to try hard, it’s just there! It also forms the basis for effective problem-solving.
In sum, autism makes my life pretty amazing, and I would never want to be rid of it. Yes, there are some very real challenges that often come with autism, such as co-occurring mental and physical health conditions. But, all things considered, I think the benefits outweigh the challenges.
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For many adults who identify as female, a late or adult autism diagnosis has several benefits. Many newly diagnosed autistic women say their diagnosis brought newfound self-understanding and self-compassion. But their diagnosis did not erase years of damage from living in a world that is hostile towards neurodiversity. Even armed with their newfound knowledge and understanding, many autistic adults continue to struggle in some key ways.
This is what Toronto therapist, Dori Zener, found after working with autistic teens and adults for over 10 years. She outlines a therapeutic approach called INVEST (Identify Needs, Validate, Educate, Strengthen and Thrive) in Advances in Autism.
Here are some issues commonly experienced by newly diagnosed autistic women:
1) Low self-worth
Self-worth is one of the main areas where autistic women continue to struggle. They may have been diagnosed and welcomed into the autism community, but a lifetime of not fitting in has a major impact on how they feel about themselves.
“Their self-worth is eroded from a lifetime of being treated as if who they are and how they behave is odd or intolerable to others. … Many express the mental strain they have experienced from the cumulative effects of living with unsupported needs due to unidentified autism — mental health challenges, issues with self-worth, self-esteem and fatigue.”
Dori ZenerEven 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 ZenerWhile 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 ZenerSensory 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 ZenerJust 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
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The Other Autism 