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Chiari Malformation: What You Need to Know

Chiari Malformation: What You Need to Know

Part I of our Chiari Malformation Awareness Month Series

It’s Chiari Malformation Awareness Month and time to put this important neurological condition in the spotlight. It’s a subject near and dear to many EDS zebras, as it is a common comorbid condition to the Ehlers-Danlos Syndromes.  Chiari Malformation can also be congenital and is believed to be the widest known cause of CM today, however it is possible this may be a misconception due to the failure of many to recognize the role that hypermobility and craniocervical instability may well play in the development of Chiari later in life.

There are also a number of socio-political factors that block the treatment and discovery of Chiari, which will be explored in the second part of this two part series. Part two will also include the firsthand perspectives and experiences of people who have a confirmed Chiari Malformation (CM) diagnosis so we can get an intimate picture of what it’s like to live with the condition, though it’s important to understand that like most chronic illnesses, no two people seem to experience CM quite the same. In this first post, we will walk through the basics of CM, learning what Chiari Malformation is, the four known types and how they are classified. Of course no informational post on a condition would be complete without exploring the known causes, symptoms, and treatments.  

What is a Chiari Malformation?

It is said that the Chiari Malformation affects 1 in 1,000 people: However, the increased use of diagnostic imaging has shown that Chiari malformation may be much more common(1). Chiari Malformations are structural defects located at the in the base of the skull where the spine meets it. These structural defects can cause the brain to sag into the spinal canal, causing herniation of a portion of the cerebellum, cerebellar tonsils and/or the fourth ventricle. Depending on the severity, there are a variety of symptoms and complications that come with Chiari Malformation.

The cerebellum is the part of the brain that controls balance, memory, cognition and motor skills.  Normally the cerebellum and parts of the brain stem sit above an opening in the skull that allows the spinal cord to pass through it. This is called the foramen magnum.  In CM, part of the cerebellum extends below the foramen magnum and into the upper spinal canal, causing pressure on the cerebellum and brain stem that may affect functions controlled by the cerebellum and block the flow of cerebrospinal fluid (CSF).

Learn about Cerebrospinal Fluid and Lumbar Puncture: here.

There are four types of chiari malformation. According to the American Association of Neurological Surgeons, they are classified in the following ways:

 Type I occurs during fetal development and is characterized by downward displacement by more than four millimeters, of the cerebellar tonsils beneath the foramen magnum into the cervical spinal canal. Anomalies of the base of the skull and spine are seen in 30-50 percent of patients with Chiari I malformation.

Type I is also believed to include the formation of Chiari Malformation through Craniocervical Instability, where CM often meets with EDS or another Hypermobility Spectrum Disorder (HSD), such as JHS, Marfan Syndrome, or Loey-Dietz Syndrome. According to the Pain Relief Foundation, “Craniocervical Instability (CCI), also known as the Syndrome of Occipitoatlantialaxial Hypermobility, is a structural instability of the craniocervical junction which may lead to a pathological deformation of the brainstem, upper spinal cord, and cerebellum. It primarily occurs in patients with Ehlers-Danlos Syndrome and other hereditary disorders of connective tissue (4).”

The Ehlers-Danlos Society notes that we need to develop a better understanding of the prevalence and variance of CM in EDS/HSD, along with educating neurosurgeons on the role of hypermobility may play in chiari malformations (5).

Diagram compare a human head absent Chiair Malformation in comparison to diagram's depicting Types I and II. Image property of the Zebra Pit.

Type II is characterized by downward displacement of the medulla, fourth ventricle and cerebellum into the cervical spinal canal, as well as elongation of the pons and fourth ventricle. This type occurs almost exclusively in patients with myelomeningocele, a congenital condition in which the spinal cord and column do not close properly during fetal development.

Type III includes a form of dysraphism (a spectrum of congenital anomalies resulting from incomplete or aberrant neural tube fusion, 3.) with a portion of the cerebellum and/or brainstem pushing out through a defect in the back of the head or neck. These malformations are very rare and are associated with a high early mortality rate or severe neurological deficits in patients that survive.

Type IV is the most severe form and the rarest. The cerebellum fails to develop normally. There may be other associated malformations of the brain and brainstem. Most babies born with this malformation do not survive infancy (2).

Symptoms Associated with Chiari Malformation

According to the NIH’s Chiari malformation Fact List, the hallmark sign of Chiari malformation is headache, especially after sudden coughing, sneezing, or straining.  Other symptoms may vary among individuals:

  • neck pain
  • hearing or balance problems
  • muscle weakness or numbness
  • dizziness
  • difficulty swallowing or speaking
  • vomiting
  • ringing or buzzing in the ears (tinnitus)
  • curvature of the spine (scoliosis)
  • insomnia
  • depression
  • problems with hand coordination and fine motor skills 

Some individuals with CM may not show any symptoms and symptoms may change or fluctuate, depending on personal physiology, the compression of the tissue and nerves and on the buildup of CSF pressure. 

Infants with Chiari malformation may experience the following:

  • difficulty swallowing
  • irritability when being fed
  • excessive drooling
  • a weak cry
  • gagging or vomiting
  • arm weakness
  • a stiff neck
  • breathing problems
  • developmental delays
  • inability to gain weight (1).

Of course, this is just a basic list of the most common symptoms of CM. As mentioned, it is possible for a Chiari malformation to be present, but completely asymptomatic (free of any noticeable symptoms). In these patients, the condition is usually discovered through MRI taken for unrelated reasons. However, patients may experience symptoms in the future. It has also been known for symptoms to fluctuate over time.

 As the condition progresses, there are many comorbid conditions that can develop with CM and different types have different symptoms. According to the NIH, common comorbid conditions include:

Hydrocephalus is an excessive buildup of CSF in the brain.  A CM can block the normal flow of this fluid and cause pressure within the head that can result in mental defects and/or an enlarged or misshapen skull.  Severe hydrocephalus, if left untreated, can be fatal.  The disorder can occur with any type of Chiari malformation, but is most commonly associated with Type II. 

Spina bifida is the incomplete closing of the backbone and membranes around the spinal cord.  In babies with spina bifida, the bones around the spinal cord do not form properly, causing defects in the lower spine.  While most children with this birth defect have such a mild form that they have no neurological problems, individuals with Type II Chiari malformation usually have myelomeningocele, and a baby’s spinal cord remains open in one area of the back and lower spine.  The membranes and spinal cord protrude through the opening in the spine, creating a sac on the baby’s back.  This can cause a number of neurological impairments such as muscle weakness, paralysis, and scoliosis. 

Syringomyelia is a disorder in which a CSF-filled tubular cyst, or syrinx, forms within the spinal cord’s central canal.  The growing syrinx destroys the center of the spinal cord, resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.  Other symptoms may include a loss of the ability to feel extremes of hot or cold, especially in the hands.  Some individuals also have severe arm and neck pain. 

Tethered cord syndrome occurs when a child’s spinal cord abnormally attaches to the tissues around the bottom of the spine. This means the spinal cord cannot move freely within the spinal canal. As a child grows, the disorder worsens, and can result in permanent damage to the nerves that control the muscles in the lower body and legs.  Children who have a myelomeningocele have an increased risk of developing a tethered cord later in life.

Spinal curvature is common among individuals with syringomyelia or CM Type I.  The spine either may bend to the left or right (scoliosis) or may bend forward (kyphosis).


Diagnosis of Chiari Malformation

CM is typically diagnosed by a neurologist, preferrably one with an expertise in treating CM.  The doctor will perform a physical exam and check the person’s memory, cognition, balance (functions controlled by the cerebellum), touch, reflexes, sensation, and motor skills (functions controlled by the spinal cord).  The physician may also order an MRI, X-ray or CT. The most common imaging used is MRI. There are problems with diagnosing Chiari through the use of traditional supine positioning: However, this will be covered in our next post in this series.

Other tests the doctor might order, according to the AANS, include sleep or swallowing studies, a BAER test, myleogram, or SSEP (2).

Chiari Malformation Treatment

Left – Pre-operative. Right – Post-Operative. Image property of Mayo Clinic.

In the case of asymptomatic patients, no intervention is needed. However, monitoring of the patient, including regular check-ups, is usually recommended. In many cases, Chiari Malformation symptoms and disease progress may only be relieved or halted through surgical intervention. According to the NIH, these procedures are as follows:

The most common surgery to treat Chiari malformation is posterior fossa decompression (PFD). In the case of type II CM, a PFD is usually followed by a spinal fusion, where hardware is placed to create a supportive structure for the head and neck. This creates more space for the cerebellum and relieves pressure on the spinal cord. 

The surgery involves making an incision at the back of the head and removing a small portion of the bone at the bottom of the skull. This procedure is known as a craniectomy.  In some cases the arched, bony roof of the spinal canal, called the lamina, may also be removed to create sufficient space for the cerebellum. This procedure is referred to as a spinal laminectomy. The surgery should help restore the normal flow of CSF, and in some cases it may be enough to relieve symptoms while other patients show no improvement or even a worsening of post-operative symptoms.

Next, the surgeon may make an incision in the dura, the protective covering of the brain and spinal cord.  Some surgeons perform a Doppler ultrasound test during surgery to determine if opening the dura is even necessary.  If the brain and spinal cord area is still crowded, the surgeon may use a procedure called electrocautery to remove the cerebellar tonsils, allowing for more free space.  These tonsils do not have a recognized function and can be removed without causing any known neurological problems.

The final step is to sew a dura patch to expand the space around the tonsils, similar to letting out the waistband on a pair of pants.  This patch can be made of artificial material or tissue harvested from another part of an individual’s body.

The Zebra Pit provides everything you need to know about Chiari Malformation in this post, from the different types, to common comorbid factors and symptoms, to diagnosis, treatment and outcomes.

Infants and children with myelomeningocele may require surgery to reposition the spinal cord and close the opening in the back.  Findings from the National Institutes of Health (NIH) show that this surgery is most effective when it is done prenatally (while the baby is still in the womb) instead of after birth. The prenatal surgery reduces the occurrence of hydrocephalus and restores the cerebellum and brain stem to a more normal alignment.

Hydrocephalus may be treated with a shunt or tube that drains excess fluid and relieves pressure inside the head.  These tubes drain the excess fluid into either the chest cavity or the abdomen so it can be absorbed and disposed of by the body. 

An alternative surgical treatment in some individuals with hydrocephalus is third ventriculostomy, a procedure used to improve the flow of CSF.  A small hole is made at the bottom of the brain cavity, diverting the CSF flow to relieve pressure.  In cases where surgery was not effective, doctors may open the spinal cord and insert a shunt to drain a syringomyelia or hydromyelia, which is increased fluid in the central canal of the spinal cord (1).

What’s Next?

Today, we learned about what Chiari malformation is, the four types and their symptoms, diagnosis and surgical interventions. The next post in this series on CM will explore the outcomes for patients with Chiari Malformation, along with the socio-economic impacts that affect receiving treatment of this complex disorder in both private and public healthcare settings. It’s now available here: The Issues of Diagnosis and Treatment of Chiari and Craniocervical Instability

Then our final post will include interviews by people who have either received, or are awaiting treatment along with information about another group of patients, who strongly suspect CM, but cannot even get the proper the imaging for confirmation due to the strictures these socio-economic factors create. It’s now available here: 7 People with Chiari and CCI Share Their Stories

Let’s start the conversation early! Are you one of the suspected undiagnosed? Have you been diagnosed and/or treated? Let us know your story in the comments! And as always, thanks for joining us for this educational post about Chiari malformation.

Resources and Related Reading:

  1. National Institute of Health. Chiari Malformation Fact Sheet.
  2. AANS. Chiari Malformation.
  3. Science Direct. Learn more about Spinal Dysraphism.
  4. The Pain Relief Foundation. What is Craniocervical Instability?
  5. The Ehlers-Danlos Society. Neurological and Spinal Manifestations of the Ehlers-Danlos Syndromes (for Non-experts).
  6. NORD. Chiari Malformations.
  7. Conquer Chiari Website
  8. Piper, RJ, et al. The BMJ. Chiari malformations: principles of diagnosis and management

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Chiari Malformation may be one of the most underdiagnosed conditions for spoonies and zebras with chronic head pain and other neurological symptoms. If you have EDS, HSD, JHS, GHS, Marfan Syndrome, Loey-Dietz, ME/CFS, Fibromyalgia or a similar condition, you need to know about Chiari Malformation symptoms, along with how its diagnosed and treated.
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Am I Autistic? Women, Autism and the Issues of Diagnosis

Meme which shows an infinity symbol in rainbow colors. The text says "Acceptance. Love. Neurodiversity. It's as simple as that. Join the movement."

Near the end of 2018, I began to suspect I might be autistic. The suspected link between autism and Ehlers-Danlos Syndrome got me thinking about how certain symptoms, characteristics and personality traits of mine line up with an autism diagnosis. I was suspicious enough to take an online test which led to a bit of research and an evaluation with a psychiatrist in January.

For months I’ve been trying to unlock my thoughts and feelings about my autism evaluation so I could share it with my readers and the people in my life. Now that it’s Autism Awareness Month, I’m forcing myself to unclench these jaws and speak about it (metaphorically, as it were). I’ve had difficulty sorting my thoughts and feelings because neither the evaluation nor its conclusion were anything like what I hoped and everything like what I anticipated and yet, I am still somehow at a loss as to how to proceed.

After testing fairly high on the online test I took, the psychiatrist told me I’m not on the  spectrum at all, but have similar traits that are more likely caused by attachment disorder. He added that I do hold a lot of similarities: However, it was his opinion after his 15 minute conversation with me that I don’t have it.

Why would he come to this conclusion and possibly be wrong? First, He tested me as if I was a male child, failing to recognize there is a distinct difference between the sexes in autism. While my score on the questionnaire was sufficient for diagnosis, because the doctor didn’t know what to look for in a female with autism. I know this to be true because when I questioned it after the fact, he told me no such differences exist. He instead diagnosed me with an attachment disorder, a diagnosis I already had. According to Kim Wutkiewicz writing for AANE:

Women with Asperger profiles are less likely to be diagnosed and more likely to be misdiagnosed for a number of reasons. Additionally, many professionals have been trained to recognize typical Asperger/autism spectrum expression more easily in males than in females. While many professionals and advocates are working hard to change this reality, there is still a long way to go in terms of universal understanding and recognition of the unique gifts and challenges of Asperger women. While the core characteristics of an Asperger profile does not differ between genders, girls and women might demonstrate different outward reactions to the profile. While every girl and women [sic] with an Asperger profile is unique, many share certain experiences.

pale woman with turquiose hair and peach and turquiose swim suit lays by a pool wearing sunglasses.

While I hate to argue with yet another diagnosis (or lack thereof), it’s hard to ignore all the evidence screaming to me that I am autistic and hear once again, from yet another doctor, “Sorry. You’re wrong.”

If my only symptom were sensory overload, I’d concede the root cause of this problem is several fold and definitely doesn’t mean I have autism. After all, the fibromyalgia, migraines, or POTS alone would be enough to explain it, if it had been sudden onset with these illnesses, but it was not. I have struggled with sensory overload my entire life, but had no language to articulate it had anyone listened to my complaints. My father thought my extreme sensitivity was hilarious and would tickle me until I turned blue. Maybe he thought I was laughing. My sister thought my sensitivity was so funny, she used to say I was ticklish through airwaves. My mother, who experienced the same things and had much the same disposition would become livid about this when she rarely ever defended me when it came to anything else.

If crippling shyness were my only issue, I’d be all too happy to say that it’s all about the lack of nurturing and care in my early life. Torture tickling was the least of my early childhood nightmares. But this list, compiled from several sources on women with autism, could easily be speaking about me specifically:

Autism Expression in Women and Girls

A pale woman with long blond hair and glasses in a white sweater types on a keyboard before a large computer monitor.
Photo by Negative Space on
  1. As a young girl, she may know that she is different, noticing that her interests veer away from those of her peers. She may prefer having only one or two friends, or to play in solitude, having an appreciation of and focus on specific interests.
  2. She might demonstrate an aversion to what is popular, what is feminine, or what is fashionable. Sensitive to textures, she might prefer to wear comfortable, practical clothing.
  3. She might appear naive or immature, as she is out of sync with the trends or the social norms.
  4. She might work very hard to “camouflage” her social confusion and/or anxiety through strategic imitation, by escaping into nature or fantasy, or by staying on the periphery of social activity.
  5. She might show different sides of her personality in different settings. “A girl with Asperger’s syndrome may suffer social confusion in silence and isolation in the classroom or playground but she may be a different character at home, the ‘mask’ is removed.” (Tony Attwood). At home, she might be more prone to releasing her bottled up emotions through meltdowns.
  6. She might be exhausted from the work of deciphering social rules or of imitating those around her to hide her differences.
  7. She might be anxious in settings where she is asked to perform in social situations. This could lead to mutism, escapism, or a focus on routines and rituals.
  8. Frequently, women with Asperger profiles, like neurodiverse men, have intense special interests; however, these special interests can follow different sets of themes. Historically, women have been less likely than men to be interested in transportation, computers, or astronomy, and more likely to be passionate about literature, the arts, animals, environmental activism, and other topics with relational themes. That said, when it comes to special interests, anything goes for both genders.
  9. Females with ASD’s often develop “coping mechanisms” that can cover up the intrinsic difficulties they experience. They may mimic their peers, watch from the sidelines, use their intellect to figure out the best ways to remain undetected, and they will study, practice, and learn appropriate approaches to social situations.
  10. Difficulty with social communication increases with age for autistic females.
  11. She may rely heavily on other children to guide and speak for her, suffering more social issues as she gets older and this behavior becomes less tolerated by peers.
  12. She may have issues with anxiety, depression or moodiness and seem unpredictable.

Why Women Are Underdiagnosed

Misdiagnosis is only a small part of the problem. Many girls on the spectrum are missed entirely and there are a number of reasons why this may be. It was once thought that autism and aspergers were conditions that only affected men, an idea born thanks to Hans Asperger himself, according to Grant Satchell. For this reason, it’s only just come to light in the last decade that the true gender statistics could be as high as 1 girl to every 3 boys who have autism.

While Hans Asperger eventually came to his senses, much of the damage was already done. How autism spectrum disorders presents in women would not be examined for many decades to come, leaving many girls and women who mask well (typically better than men do) to fend for themselves.

Even though we now have this information, these changes can be slow to disseminate or even be included in the DSM and autistic girls and women are still being missed in doctor and psychiatry offices around the world. Lisa Jo Rudy notes:

Girls who have overt symptoms such as obvious self-stimulating behaviors (stims), extreme difficulties with speech and language, severe difficulties with social communication, or significant cognitive challenges, are usually referred for evaluation and diagnosed at a young age. But girls whose symptoms are subtle, or whose intelligence level allows them to mask symptoms, may only be diagnosed as pre-teens or teens.

Being in this latter category, I worked very hard to cover my differences my entire life and only rarely succeeded. I always had a best friend who took care of all of my social needs, spoke for me and helped me obtain what I was too afraid to do for myself. Thinking back now to how these people functioned as the touchstone of my universe and often became one of my intense interests, I feel shocked and embarrassed by everything I put them through. 

acceptance goes beyond awareness

I spent countless hours playing pretend and trying to figure out how better to fit in. I did have some terrible stims, for which I was castigated frequently, but it was certainly never treated as anything that could indicate a problem. My nail biting was simply a “nasty habit” that I had to stop… “and why must your leg always bounce like that, a mile a minute? Just relax!” I also practiced self-harm as a teenager, a fact that I’ve revealed to no one but my husband until now.

Despite how well I seem to hide, I do have my cognitive issues and deficits, things that I’ve been dealing with my whole life, as well as things that have become a problem since the surge in my chronic illness the last 10-15 years. It’s difficult to tell if I had learning delays because I was moved around a lot and every time I got into a new school, there were always deficits to contend with. I did poorly in most subjects except English. Yet, despite my love of language, I’m a slow reader. It takes extra time for things to sink in for me.

All of my thought processes are rather slow. This is especially true if I’m anxious and so when I’m talking to someone I don’t know well or there is a group of people, sometimes thought seems impossible and I have a much harder time forming coherent sentences and recalling information. This began long before my PTSD symptoms ever started. I remember vividly how a boyfriend contended that I appeared “unreliable” because it took me so long to respond to questions. These things catch in my anxious brain and become part of the loop of negative self talk I become stuck in when I begin a PTSD cycle.

Speaking of “unreliable,” part of why it takes me so long to respond is because I know I have to contemplate the meaning behind words a bit, because yes, sometimes double-speak like “You seem unreliable” instead of “I think you’re lying” often fly right by me. I don’t always get what’s being inferred and much prefer direct communication styles, something I’m told I am a lot; direct. And while I love metaphor, simile and language play, I sometime take things too literally, or oddly, very metaphorically, when it was never intended that way. And when someone laughs in my face for it? IT STINGS. I am a crafter of words. I fear I’ll be viewed as an imposter when my language deficits are uncovered.

This is how I came to writing. I love that I have the opportunity to tweak and edit and make things perfect so that the world can understand and see me clearly; without the physical awkwardness, the shy tics or the occasional inability to meet another human gaze. It was through my writing that I ever felt fully understood for the first time and I wouldn’t doubt that’s why I worked so hard to turn it into a career; so I could capture that feeling often and share of myself the things I’ve always wanted to as much as to escape the real world.

Am I Autistic?

Until writing this, it’s been difficult to articulate my thoughts on this experience, so I’ve found myself instead in a cone of silence about the whole thing with strangers and friends alike. Am I autistic? I certainly see myself in so much of the work I’ve been reading by autistic writers, their own experiences mirroring my own in so many ways, it feels like coming home, like knowing myself fully for the first time and that I am in no way alone in the way I experience the world and am treated as a result. I feel like I’ve found the pieces to adequately explain why other people have also insisted that I am “quite unique” to downright “bizarre.”

The psychiatrist who half-heartedly attempted to diagnose me does have a valid point about the similarities between attachment disorder and Autism, though. What he seems to fail to recognize, in addition to the fact that he tested me as if I were a male child, is that the DSM-V states attachment disorder as being strongly linked to or a possible cause for autism. In a way, he’s making my case for me.

The problem with diagnoses based on symptoms, which is what the DSM is almost entirely comprised of given that there are few mental health conditions that can be seen on a blood test or scan, is that it’s all very much left open to interpretation and the diagnosticians own point of view. My therapist even pointed out when I brought my concerns to her that many practitioners have their “rote diagnoses,” and one therapist she knows diagnoses every patient he sees with Tourette’s! It doesn’t surprise me that a doctor completely unfamiliar with autism in women couldn’t see it in me, but he was quite happy to give me one of his favorite diagnoses instead.

In the end, I believe he got the diagnosis wrong, which I feared might happen, solely because I was a 46 year old female. The question is, should I continue to pursue diagnosis or let it go and if I don’t do that, do I have a right to refer to myself as autistic? In a way, I really want to put down the fight, feeling that I’ve satisfied my own curiosity and can act on this information on my own to try to help improve the things I am struggling with. I don’t need a certificate, I need the information so I take the right approach to resolving some of my issues.

A black meme with bright yellow border and writing that says "Autism is not a mental disorder: Autism is a neuro-developmental disorder. Do not judge, educate. Dealing with Autism Spectrum Disorder."

Of course the problem with this is that if I don’t have a diagnosis, then it’s not on my chart and there are many health concerns specific to an autism diagnosis, especially as one ages. The other concern is that while I’m probably stuck working from home for the rest of my life, I may still benefit from specific accommodations due to my autism and it certainly would make things easier to have a documented diagnosis.

Maybe I don’t need a diagnosis to prove anything. In some respects proof of any mental health diagnosis can have its drawbacks—the fact that autism is even in the mental health realm seems inaccurate and highly problematic to me. After 15 years as the friend and stepmother of an autistic male and much study, I firmly believe it is a health condition with common comorbid mental health conditions and not the other way around. That aside, I certainly could benefit from a diagnosis for treatment. I personally don’t think it’s ever too late to get a diagnosis of any type, especially one that’s suspected to be a genetic disorder or mutation, such as autism. I put just a few ideas why in the graphic to the left.

Overlay graphic shows an image of a pale woman with blue hair and sundglasses. The text reads: "Autism: Why Get Diagnosed? To gain access to resources and treatment, for self-insight, to find & establish a place of belonging & community, to learn about & address potential health concerns (autistic burnout, MTHFR mutations, etc.), to arrange any necessary accomodations for work or school, for peace of mind.

These questions are important to me and I’d love your input on it, most especially if you’re on the spectrum yourself. I certainly don’t have all the answers. Some people I’ve talked to seem to take the attitude that I’m wasting my time; that it’s something you shouldn’t worry with beyond childhood, but I think that simply points to the ignorance surrounding the diagnosis. It’s not a learning disability. It’s not something you grow out of, though autistics certainly do grow and change. Whatever the mechanism driving it, Autistic brains work a bit differently. The behaviors some see as strange are how autistics accommodate those differences. That’s why autism is considered neurodivergence; because it covers a whole range of disorders that cause diversity in the way autistics receive, process and respond to the world.

Despite my own place on the Autism spectrum still being up for question, I’ve decided ASD is something I would very much like to cover at the Zebra Pit, at least current news, studies, etc. It has a high comorbidity rate with EDS, it is a rare condition that’s largely thought to be genetic in nature, it’s neurological and as an autism mom, it’s something near and dear to me.


  1. Asperger and Autism Spectrum: Women and Girls
  2. Symptoms of Autism in Girls
  3. Autism in Women Significantly Underdiagnosed
  4. What is Autism?
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Gastrointestinal Symptoms in EDS

Editor’s Note: This post was reviewed and updated for accuracy on 4/21/19. Thank you.

Below is the recorded presentation given by Dr. Adam Farmer on Gastrointestinal Symptoms in EDS presented at the Ehlers Danlos Society 2017 EDS Global Learning Conference, along with the slides used during the presentation.

You can find the slides here.

Gastrointestinal Symptoms in EDS Pin1