The topic of “dysautonomia” is a very popular one amongst people with hereditary connective tissue disorders like Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD). Yet in spite of the significant comorbidity between EDS/HSD and autism, dysautonomias are not much of a talking point in the autism community. Yet.
Would it surprise you to know that the majority of autistic people exhibit some kind of autonomic dysregulation and that this can affect all sorts of things like anxiety, gastrointestinal function, and even the immune system? First off, if you’re not coming from within the EDS/HSD community you may be wondering, “What the heck does ‘autonomic’ mean???” Here’s where you get a little bit of a neuroanatomy lesson, so buckle up.
The nervous system is divided into two main branches: the central nervous system (CNS), which is composed of your brain and spinal cord, and the peripheral nervous system (PNS), which are all the nerves that run out into your body and connect all your organs, etc., back to your spinal cord. Your PNS is further divided into the “motor” and “sensory” branches. The motor branch is basically outgoing information and the sensory is mostly incoming information. Here, we’ll focus on the motor component.
The motor branch is divided into the somatic nervous system (SNS), which controls your voluntary muscle movements, and the autonomic nervous system (ANS), which is basically all those little involuntary functions you don’t have to think about in order for them to work. That includes things like cardiac function, temperature regulation, and digestion, all of which require nerve input in order to occur.
When we use the terms “dysautonomia,” “autonomic disorder,” or “autonomic dysfunction/dysregulation,” we’re basically just saying that the ANS is doing something it shouldn’t be doing. This can either be an actual dysfunction in the ANS itself (primary) or the ANS is reacting to something else that’s going wrong in the body and thereby creating problems (secondary).
The ANS is involved in things like:
- maintaining body temperature
- regulating breathing
- moderating blood pressure and heart rate
- orchestrating digestion
- controlling bodily excretions (e.g., sweat)
- regulating sexual arousal
When the ANS is dysfunctional or dysregulated, it can lead to symptoms such as:
- fainting or dizziness
- fast or slow heartbeat (often postural)
- drops in blood pressure (often postural)
- gastrointestinal problems (reflux, nausea, diarrhea, constipation, and even gastroparesis)
- exercise intolerance
- shortness of breath
- anxiety and mood changes
- frequent urination
- disrupted sleep
- muscle tremors
- brain fog
- problems regulating body temperature
- sensory sensitivity, especially to light and sound
Each of these symptoms can seem somewhat nonspecific and almost all people have experienced issues with these at one time or another, so it’s easy to see how dysautonomias are often missed by doctors. But if you have many of these symptoms on a chronic basis, you may have a dysautonomia.
What about autism? In order to understand what’s going on, we need to split the ANS into two further branches: the sympathetic (SNS) and parasympathetic nervous systems (PSNS). The SNS is basically responsible for all the automated behaviors associated with “fight or flight.” Meanwhile, the PSNS is the “rest and digest” branch.
In autism, it appears that the SNS or fight-and-flight branch is overactivated, often at the expense of the rest-and-digest branch. Is it any wonder then that anxiety is such a pervasive problem in this group of people who are often in a state of fight-and-flight? It also causes one to wonder: Is the anxiety in autism always the result of the brain or might it sometimes be the peripheral system telling the brain it should be anxious? For example, have you ever had a panic attack because your heart started racing rather than the other way around? It’s hard for the brain to ignore these kinds of physical cues that are normally associated with anxiety and it tends to just go along.
Last year, I attended an autism think tank in which the entire session was devoted to autonomic issues in autism. So there is slowly growing interest in dysautonomias in the spectrum. But although it’s a very popular topic in EDS/HSD, it’s still not mainstream in autism yet. And I suspect that may not happen until autistic people and their families start demanding that medical research expand its focus and I encourage you all to do so. After all, these are issues that impact quality of life and overall health in a large portion of the spectrum and something that I think almost anybody can agree needs serious attention.
I,of course,have had many of the same symptoms listed here,but my main nervous system problem,has not been one listed here.I have severe,chronic inflammatory demyelinating polyneuropathy,which is another disorder of the autonomic nervous system.I have this in all four limbs.
We’re seeing some tight links between immune system dysregulation and dysautonomia, so the neuropathy is definitely a common occurrence.
Great posting. Would you mind if I translate it in German for my autism blog?
Please, by all means! 🙂
I have POTS as well as suspected Asperger’s.
Sent from my iPhone
Do you have a hereditary connective tissue disorder? Many times in autistic women, we see that as well as the orthostatic intolerance. Are you double-jointed?
Pingback: Love for Science – Made by Stardust·
Thanks for this post!
I have ASD, POTS and EDS. I’d never realised there may be a link between them until I saw a video on Facebook from Agony Autie a couple of days ago, who mentioned that many people with ASD have EDS and Dysautonomia as comorbidities.
It makes a lot of sense to me that Dysautonomia would accompany ASD as we over-process I guess you could say. It makes sense that our autonomic nervous system would be overactive.
Are there any theories as to the link between EDS and ASD, or is it just observed correlation at this stage?
It’s definitely early days as far as causal links between autism and EDS. However, based on our preliminary work I know what *I* suspect to be the links. I suspect it’s probably somewhat complicated, involving connective tissue’s roles in neurodevelopment but also our propensity towards immune disorders like MCAS, so the other half I suspect the maternal immune system plays a role in autism susceptibility. We’ve found that EDS/HSD moms with autistic kids tend to report more immune symptoms than moms without.
Hi, this is a very interesting post. Around three years ago my doctors finally said to me that I have dysautonomia, I have almost all those symptoms and monocular diplopia that comes and goes (I don’t know if this is due to dysautonomia). Apparently I’m on the autism spectrum, although I’ve never looked for official diagnosis ’cause I can’t pay for the “official” evaluation (I have family on the spectrum, including my brother and my two kids, so it’s from my side).
Today I searched about this issue bacause I noticed that a lot of women was talking about those dysautonomic symptoms in a exclusive group for TEA women (most of them had never heard of it until now). So far, all comments were like “It happens to me too” and describing the symptoms and details about when it happens and how frecuently, and they have many years with this issues too (also hypermobility came to the subject btw).
I was thinking that this link betwen dysautonomia and autism isn’t common knowledge among autism professionals yet. I see some material around internet about it, but I also see the need for more research in this matter, so I’m happy to see that there is someone looking at it (yes, all that words only to say that I’m happy… and hopeful).
I’ll read more about this link and I’ll try to present what I find to the health professionals I know. Someone will listen I hope.
Yes, I agree that it isn’t quite catching on in the mainstream autism research community yet, but I hope interest in it will continue to grow. I think as the various dysautonomic diagnoses become better solidified and known, they will happen. But for now, even most doctors are unfamiliar with autonomic disorders and rarely look for them.
I have recently fallen down the rabbit hole of research in lieu of my 7 year-old daughter’s recent Asperger’s Diagnosis. Along the way I have had my best friend and brother confirm my suspicions about my own Asperger’s probability. Both my father and brother have it, unofficially diagnosed but blatant.
My jaw dropped reading about neurally mediated hypotension. I am 39 years-old and have never been able to take a shower in the morning because every attempt leads to near fainting spells once in the shower. My natural BP is extremely low and is consistently questioned at any healthcare visit, but never an issue otherwise.
Also of interest is how every time my daughter drinks or eats something cold in quantity her extremities get cold, she freezes and has to bundle even in incredibly hot temperatures.
I’m flabbergasted on what I’m stumbling upon because it’s all so new to me!
We know she has sensory processing disorder that I work diligently to satiate every morning before school, in school, and evenings. Of course anxiety manifests along the way, but Asperger’s is my latest challenge in being a mom expert about to best arm her.
Yeah, it’s kind of a new area in science/medicine and is unfortunately poorly understood and recognized by most physicians. In our own clinical studies, we’re finding that these dysautonomias are actually fairly common. We’re usually looking for signs of “orthostatic intolerance (OI),” which are basically autonomic symptoms triggered by changes in posture. We normally use a gentle supine-to-standing test taking blood pressure and heart rate. If the heart rate goes up more than 30 points or the systolic drops 20 points/diastolic drops 10 points while going from supine-to-standing or even sitting-to-standing, then that’s a pretty good indication the person has some OI. In some of my husband’s work looking at kids on the autism spectrum, however, they’re using more sophisticated measures of autonomic dysregulation and are able to catch issues that may be asymptomatic or symptomatically ambiguous. We’re also just starting a study looking at autonomic issues in Fragile X premutation carriers because of some symptomatic overlap we’re seeing with Ehlers-Danlos Syndrome (which has a lot of dysautonomias).
Anyways, glad the blog really resonated with you! There are some decent books out there on dysautonomias. The one I’m most familiar with is called “The Dysautonomia Project.” I highly recommend it! 🙂
This is all so fascinating! It’s easy to get caught up (and not to downplay) Mommy Support style phases. I’m old school on my research of Asperger’s *not* lumping into the ASD spectrum because the DSM chose to umbrella it. “High Functioning” is lumped as a second thought on layman research resources, and having a girl on the spectrum is an additional niche that posts challenges!
Keep up the amazing science!
Thank you! Glad it resonated with you!! 🙂
Thermoregulation I have long had difficulties with. I describe my difficulties organising incoming sensory information in my essay ‘Fantasy Autism Simulation Suit’ (which isn’t yet on my WordPress; I hit technical problems), and explore Dr A. Jean Ayres’ neuroscientific studies into Sensory Integration. The 8 senses she discusses include Interoception (awareness of what’s going on inside the body), and I feel this is linked to the body’s homeostasis.
I particularly find it interesting that people with dysautonomia (autism aside) also tend to have sensory sensitivities, particularly to light and sound. Some interesting crossover there that makes one wonder are sensory issues always rooted in the brain or might they involve the peripheral nervous system as well?
Found your post as I am in the process of writing on this topic myself, will link back to it. Yes! After years of “mystery” health issues umbrella-ed as fibromyalgia and chronic fatigue, however I recently discovered that I have EDS and dysautonomia right at the core, it seems blinding obvious that this is linked to my Asperger traits and super-sensitivity issues, also to the fact I have tended to handle years of trauma, going back to childhood, without seeking help, in a way that now seems very typical of other Aspie women. That hidden trauma response has fed back into the dysautonomia effect because of how ingrained the dysautonia behaviours became at such a young age when I was so triggered at school, and now I am middle aged the fall out of so many misfiring body behaviours is getting harder to live with symptomatically, on top of worsened EDS. All very fascinating once you pick at it and I really do hope this starts to get some exposure and attention from researchers as I was amazed to find so little about it compared to the EDS/Autism link.
thanks for your investigation. I am a person with hEDS and autism. I think the differences in eye movement with a neurotypic may be due in part to connective tissue. moving the eye due to optic nerve tension may be a line of investigation. I always observe this feature in me and among multiple factors such as light, the intensity of the other gaze or the gaze with which one looks, it also harbors an ocular tension. excuse my English. regards
Thanks for your input and perspective!
Fascinating beyond anything. I have autism, ADHD, anxiety, depression, other mood issues, and likely OCD as well and it was basically by looking at r/ADHDers and other more specific neurodiversity/disability subreddits mostly during these past few days that I started realizing I could have EDS, POTS, and/or some other form of dysautonomia. Up until about late 2018 I was sensitive to heat, light, cold, and noise (still am) and had some limited hypermobility (and still do, actually) but my symptoms didn’t really interfere with my life, but since about fall 2018 I’ve had the attention issues, lactose-intolerance, and fairly bad depression March/April 2020 I’ve had the frequent nausea, frequent mostly mild headaches, tiredness that on goes away if I’m physically active and/or take a nap, moments of shortness of breath, moments of dizziness especially if I get up too fast sometimes, feeling like I’m going to explode or get dizzy or get too tired (standing up for long periods of time’s a bit like a workout for me!) of collapse or sway too much etc. if I stand up, blood pooling in my extremities, etc. so it’s hard to get everything done in my life even without a regular job or school. Plus I bruise easily and for a long time compared to others. And on top of that I have the stretchy skin, joint pain/issues, and stretchmarks in multiple places on my body even now at 24. Interesting to say the least!
For people with POTS or related dysautonomias, consuming daily electrolytes can really be helpful, especially salt. Salt helps keep the blood volume up, which is often a major issue/trigger for POTS. A lot of people will drink Pedialyte, Gatorade, V8, or even eat salty potato chips off and on throughout the day. It’s also important to break tasks up into smaller segments, especially ones that require you being on your feet. As you say, it just leads to more blood pooling in the legs and potentially triggering a POTS flare.
Glad you’ve been finding this information helpful! There are some good books out there that you may also find useful, such as “The Dysautonomia Project.”
Thank you for this post and for your research! I have many questions but will stick to two: Do you know of any hereditariness of these conditions and do you know any doctor in Sweden who is up to date on this research?
My pleasure! Dysautonomias, like autism, are likely heterogeneous. They can likely be heritable, but they are not uncommon conditions either (though are undoubtedly dramatically underdiagnosed). Unfortunately, I don’t have any knowledge of practitioners in Sweden, however, there may be organizations for dysautonomia in Sweden that could be a good resource. There may be more information available on dysautonomia in general as opposed to dysautonomia related to autism, which should be helpful.
Pingback: Autism Spectrum Disorder – ALPIMS·
Pingback: POTS & MCAS – ALPIMS·
Pingback: Resources for Adult Autistic People | Masha du Toit·