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Oh Say, Can You C? The Benefits of Ascorbic Acid

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Vitamin C, otherwise known as L-ascorbic acid, is an essential vitamin that is not produced organically by our bodies. It is absorbed into our bodies through various fruits, vegetables, or supplements. It’s probably most famous for the prevention of the common cold, scurvy, and as an antioxidant, but it’s benefits may not stop there!

How The Body Utilizes Vitamin C

With fall comes the onset of the flu and cold season, making it the perfect time to learn about the immune boosting properties of Vitamin C, also known as ascorbic acid. Find out the many other ways it can help, from fighting infections to managing MCAS and autoimmune disorders.
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According to the Mayo Clinic, l-ascorbic acid is an important vitamin that aids in the formation of collagen, blood vessels, muscle, and skin tissue. It is considered a free radical, an antioxidant important to the prevention of most forms of cancer (1).

Vitamin C is a nutrient that the body can neither manufacture nor store. It is water soluble and must be ingested daily from fruits and vegetables, preferably raw: Processes such as cooking can greatly reduce C content in food.

Another way to get your daily C is through a supplement. After ingestion, ascorbic acid is processed and distributed throughout the body via the digestive tract, as most vitamins and minerals are. However, excess C is mostly removed through the body’s waste. It mostly can not be stored in body fat, or organs and tissue.

On a side note, I wish pizza and ice cream wasn’t stored in our body fat, like vitamin C!

What Are The Benefits of C?

Vitamin C helps in the formation and upkeep of soft tissue, as well as the prevention of scurvy, and can aid in the prevention of the common cold. What else can this super nutrient do? According to studies, ascorbic acid can help substantially with the following:

Immune System Support: Stress is a major health risk in our lives, especially with chronic illness. Few things can trigger a flare like stress. That’s because it can weaken the body’s immune system, creating all sorts of havoc with our health. Vitamin C is a reliable and effective means to boost the immune system, helping to stave off infections, colds and even protect against stress.

With fall comes the onset of the flu and cold season, making it the perfect time to learn about the immune boosting properties of Vitamin C, also known as ascorbic acid. Find out the many other ways it can help, from fighting infections to managing MCAS and autoimmune disorders.
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Colds: There really is no proof that C can cure the common cold. On the other hand, high doses of C can prevent complications from a cold, such as pneumonia. Taking Vitamin C daily can also offer protection from germs that cause cold and flu.

Skin Aging: Ever wonder why so many skin and beauty care products have large amounts of Vitamin C? It’s because C is vital in the development and restoration of soft tissue, such as collagen and skin. C helps restore cells both inside and out, leaving one with healthy looking skin with less wrinkling! It may also help reduce the effects of macular degeneration, reduce inflammation, and as an antioxidant,  it can help lower risk of cancer and cardiovascular disease(2).

Sepsis: According to a study on sepsis, over 6 million people die per year due to Sepsis. Sepsis is a condition resulting from microorganisms infecting the blood. It almost always leads to shock, organ failure, and death. According to studies recently published by the NIH, it is possible that high doses of vitamin c can help reduce the chances of shock and organ failure through parenteral administration (3).

MCAS: Mast Cell Activation Syndrome, or MCAS, can be debilitating. Often discussed in the Zebra Pit, MCAS sufferers are many times hit with histamine overloads, simply because their bodies have stopped producing histamine blockers. These events can have devastating effects on the body, such as anaphylactic shock. MCAS has also been studied for it’s role in other diseases that can arise from compromised immune systems, such as cancer, heart disease, and asthma. Furthermore,  it is linked to other chronic disorders such as autism, EDS, mood disorders, and POTS. (4)  How does Vitamin C help? I’m glad you asked!

As well as being an antioxidant known for soft tissue building and helping to heal and prevent infections, ascorbic acid can also be used as an antihistamine.  This means that C can be quite useful in providing competition against histamines that would otherwise take over histamine receptors in a cell. While it may not stop the degranulation process once started, C can help to prevent complications arising from MCAS attacks by further bolstering the immune system (5).

 Vitamin C is Amazing! How Much Do I Take?

According to the NIH, Adults over the age of 19 need 90mg per day for males, 75mg per day for females. However, ascorbic acid requirements can differ from person to person. For example, in this table published by the NIH, dosage requirements are higher for smokers, as the use of nicotine can leech vitamin C from the blood stream. Always check with your doctor before starting a supplement. A health caregiver should be able to determine what is appropriate for you based on your age, as well as health and environmental criteria (6).

With fall comes the onset of the flu and cold season, making it the perfect time to learn about the immune boosting properties of Vitamin C, also known as ascorbic acid. Find out the many other ways it can help, from fighting infections to managing MCAS and autoimmune disorders.

Since Vitamin C can’t be stored in the body like some nutrients, it’s almost impossible to take too much. However high doses can cause heartburn or diarrhea. Generally, doses used to boost the immune system or to help mitigate histamine overload, a dose of 1,000 mg is usually taken and you can work your way up to a full dose if heartburn or diarrhea occur.

DO YOU C WHAT I C?

With fall comes the onset of the flu and cold season, making it the perfect time to learn about the immune boosting properties of Vitamin C, also known as ascorbic acid. Find out the many other ways it can help, from fighting infections to managing MCAS and autoimmune disorders.
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Vitamin C in my mind at least, is one of nature’s wonder drugs. It’s an anti-inflammatory, antihistamine, and antioxidant all rolled into one. My wife and I both take 1,000mg per day and have seen a reduction in the number of flus, colds and infections we see at our house. It also helps my wife manage her MCAS, and may offer added support for her delicate hEDS affected soft-tissues.

In our experience, everything the research offers holds true: It bolsters the immune system. It helps improve soft tissues. It can help prevent infections, as well as lessen the effects and complication of infections. It even does my dishes! Okay, maybe it doesn’t do the dishes, but it does help me stay healthy so I can do the dishes. 😉

Here are a few links to our favorite brands in tablet and powder form, which makes it more affordable to buy in bulk if taking higher doses and can also be mixed into skin creams and lotions just before applying them.

Do you take Vitamin C? What have you noticed about how it helps your health? We’d love to hear from you in the comments.

C you later!


Resources and Related Materials:

  1. Mayo Clinic. Vitamin C.
  2. WebMD. The Benefits of Vitamin C.
  3. Sven-Olaf Kuhn, MD, et al. Vitamin C in Sepsis. NCBI. February, 2018.
  4. Jill Carnahan, MCAS: When Histamine Goes Haywire.
  5. Volbracht, Claudia. Intravenous vitamin C in the treatment of allergies: an interim subgroup analysis of a long-term observational study.
  6. NIH. Vitamin C Factsheet for Health Professionals.
  7. Institute of Medicine. 2000. Dietary Reference Intakes for Vitamin C, Vitamin E, Selenium, and Carotenoids. Washington, DC: The National Academies Press.
  8. Medline Plus Medical Encyclopedia. Vitamin C.

David Curtis lives in Florence, KY with his wife Michelle, 2 Russian Blue cats and his many fish. David manages the pet department of a prominent retail chain in addition to caring for his wife, pets and home. In his spare time, he enjoys reading, exploring history, watching football, sci-fi, fantasy or comic book shows and film, along with fighting for truth, justice, and the human condition. Much like Tyrion Lannister, he also drinks (coffee) and knows things.

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With fall comes the onset of the flu and cold season, making it the perfect time to learn about the immune boosting properties of Vitamin C, also known as ascorbic acid. Find out the many other ways it can help, from fighting infections to managing MCAS and autoimmune disorders.
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10 Great Articles Promoting ASD Acceptance

Autism, #redinstead, ASD, Awareness month

I wanted to take a moment to post some of my very favorite blog posts, articles and social media findings I’ve come across while reading up on autism and trying to decide whether the diagnosis fits me for sure, along with a few posts about April, which is traditionally Autism awareness month. I learn a lot from these articles, mostly that I am a lot more like other autistic women than I ever imaged just a few short months ago.

Autism is important in my home every month, not just awareness months. In general I’ve never really approved of the tone of awareness month and don’t participate much. I’ve never covered it on the Zebra Pit because the whole point behind the blog is to share my personal experiences and knowledge about my own healthcare concerns and I didn’t come to suspect autism was part of that picture until late last year. While my stepson was diagnosed with aspergers at the age of 4, I would never try to speak for him.

As an autism parent, I couldn’t possibly try to set some example for other autism moms, either. I didn’t even meet Ty until he was almost 10 and while we’ve had a pretty good relationship, we’ve had our difficulties, too. I share responsibility in some of the hardest times in his formative years because while I attempted to educate myself on autism, I didn’t read enough or make all the right reading choices. I’m also human. We make mistakes.

Perhaps more surprising than an autism mom not feeling like she’s qualified to hand out advice is the fact that I had Ty in my life all those years and never once questioned if I might be autistic myself. This is, unless you realize just how differently it presents in women, not to mention one person to the next. It’s not that I was being obtuse or even lack self-insight; it’s that I had no idea what to look for in a female.

I was pretty nervous about telling Ty I suspected I was autistic and awaiting an appointment for evaluation. I half expected him to yell at me and ask me how I could have been so stupid and insensitive by pushing him too hard academically if I knew what it was that he was going through. Instead, he thought about it a moment, smiled and said “I might have guessed that. It makes a lot of sense, actually.”

Now that I’m aware of my own place on the spectrum, I feel strongly about covering ASD topics and news at the Zebra Pit. I hope to attract some autistic authors to contribute to our knowledge base, while I’ll probably focus a lot on women’s diagnosis, news and research until I am formally diagnosed. As promised, here are some of my favorite articles and posts about Autism:

  1. TheAspergian: 10 Things Autistic People Wished You Knew about April & “Autism Awareness Month” – This is a great post that examines the problems with awareness month historically and provides some alternative ways that actually supports autistics.
  2. Stim the Line: 5 Signs You May Be Experiencing Burnout – A great post that talks about Autistic burnout and how to recognize the signs (boy did I recognize this cycle in my life and wonder if it’s the culprit of my early fluctuations in health),
  3. The Autism-Expert Spectrum – This intriguing post talks about the problem of diagnosis and snap judgements based on a single, brief meeting. I wouldn’t know anything about that.
  4. Study Shows the Therapeutic Effects of Marijuana on Autistic Children– MMJ use to combat the symptoms of Autism? Yep!
  5. The Search for a Biomarker for Early Autism Diagnosis – This NYT article discusses the search for a biomarker and how much better outcomes are for Autistic people when diagnosed and treated as early as possible.
  6. For lawyers with autism, the work often pairs up with things they do well – This ABA Journal article exemplifies the many ways autistic people can thrive in fields like law and some of the ways autistic lawyers work around their known communication issues.
  7. I’m A Female, Autistic Lawyer, & Every Day I Have To Counter These Stereotypes – Good article about the breadth of symptoms and presentation in autistic people being much more diverse than the daily stereotypes one female autistic lawyer comes up against.
  8. “You’re Just Kooky”: Women Who Were Diagnosed With Autism Later In Life – Not at all difficult for an undiagnosed or newly diagnosed autistic woman to cuddle up with this piece!
  9. An Interview With the Creators of CAMOUFLAGE: THE HIDDEN LIVES OF AUTISTIC WOMEN – Really looking forward to reading (and possibly reviewing) this book.
  10. ADVENTIST LA GRANGE MEMORIAL HOSPITAL: Why Autism in Girls Is Often Missed Until Adulthood – Another article recently released on underdiagnosis of Autism in women.

And here’s a bonus from Social Media that I really fell in love with:

This image and text below were shared by a friend on FB:


WHY WE DON’T LIGHT IT UP BLUE
It’s that time of year again when puzzle pieces abound and well-meaning people go blue because they believe they are doing their part in helping autistic people and their families.
Autistics are asking everyone to please stop. But there’s still something you can do to be involved in a respectful and positive campaign.
Anyone with ears to the ground in autistic spaces is hearing an onslaught of frustration, sadness and anger in the build up to this time. Autism Speaks, the initiator of the blue “awareness” campaign, is almost universally despised by autistic people. There are literally hundreds of articles and blog posts one could look up to learn more about that. Autism Speaks and “awareness” campaigns treat autistics as a group to mourn, their families as champions of living with the “burden” of autism, they use fear mongering “epidemic” speak, which defines disease, not neurological difference. They use the puzzle piece to denote a mystery and something missing. Their imagery denies there is a whole, complete child right before you, and furthers the harmful myth of a child who is less than human and can’t be reached, or who is hidden ‘underneath’ their autism…unaware of the world around them, unaware of how you are speaking about them. This is offensive. This is damaging. This is false.
Imagine being an autistic person and how unwelcome you feel this time of year when everyone is lighting it up blue to talk about the tragedy of autism, of your existence, to pity you and pat your martyr families on the back for living with autism…with…you. Disabled people do not want your pity and they certainly find it offensive and damaging to praise and pity families burdened by them. Imagine a month where everywhere you go there is the message to raise funds to “combat” autism, that is, find a cure; a cure to rid the world of autism…of…you. What’s more, the fear mongering and cure culture propagated by Autism Speaks has translated into quack cures that abuse and have even killed autistic children, because parents are desperate to extract the tragedy of autism from their child. Imagine what a culture of acceptance would bring instead.
Somehow World Down Syndrome Day is a fully fleshed out celebration of pride and joy and inclusion. How are we still stuck in the pity and oppression of approaching Autism Awareness Month like it’s a cancer awareness month? Can you imagine when that campaign is about YOU?
Autism Speaks and awareness campaigns also primarily focus on children, as if autistic children don’t grow up to be autistic adults. But they do. And while they are systematically forgotten, or worse, actively silenced, they are a growing force and they have something to say. Their words of resistance and pride are starting to break through. Autistics are asking you for ACCEPTANCE. Autistics are asking for inclusion, friendship, support and respect.
CHANGING TO A NEURODIVERSITY PARADIGM
Autistics are trying to steal away the campaign and re-appropriate it into something autism-positive by suggesting #REDinstead and #LightItUpGold for Autism ACCEPTANCE Month. If you would like to support autistic people you can listen to autistic voices. It is their right to lead the conversation.
The image below is a terrific cheat sheet to understand the difference between the traditional awareness campaign and a positive acceptance campaign.
A few more things autistics would like people to know…
Most autistics prefer identity-first language. (I AM autistic, rather than I have autism, or am a person with autism.) But a person should be called whatever they prefer to be called. It’s up to them.
Most autistics would like people to stop using functioning labels. They note that “high functioning” can denote a hierarchy in value, and is often used to deny accommodations and necessary services, and “low functioning” is disrespectful and used to strip people of their rights and presumed competence. An individual’s “functioning” also varies greatly over years, and even throughout any day and from task to task. It’s an oversimplification of an outsider’s assumptions about functioning day to day as an autistic, with potentially grave consequences.
Great sources to learn about autism from autistics (I have dozens more for anyone interested):
ASAN (Autistic Self Advocacy Network) https://autisticadvocacy.org
AWN (Autism Women’s Network) https://autismwomensnetwork.org
Thinking Person’s Guide to Autism www.thinkingautismguide.com
Being autistic is not all roses all of the time, but it’s a hell of a lot harder when people try to change who you are or pity your existence. Pay attention to the language used. My daughter needs me to make this world a better place for her, and she needs her mother to be positive about her life, and our life, and she needs to be embraced for exactly who she is and celebrated. All children need that. We have an amazing autistic daughter whom the world needs to accept because if they don’t they will miss the opportunity to be better together.
[image credit: MissLunaRose]

from ZP: Women, Autism and the Issues of Diagnosis


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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 Pexels.com
  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.

Resources:

  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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September Superheroes Caide & Madi!

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September’s Heroes are the dynamic duos Caide and Madi, who run Recovery Buddy Parcels together. A new service, Recovery Buddy Parcels works worldwide to pair people with chronic health and mental illnesses together. These Buddies then lend each other support and occasionally exchange small, inexpensive gifts to help raise flagging spirits during tough times.

The service, which is free to anyone with a chronic illness, mental illness or both, was the brainchild of Caide, a 22 year old neuroscience major at UC Santa Cruz. Caide felt motivated to start Recovery Buddy Parcels because she recognized the need. “As someone who started just as a part of the mental health recovery community but also deals with chronic illness, I know how common it is for people to struggle with both things… Most people are only really involved in one community or the other and get lots of support for chronic illness and very little for their mental health, or vice versa. Everyone needs at least one person who just completely understands everything you are saying and that can be hard to find with rare illnesses, so I wanted to try and help pair people up.”

According to Caide, they came up for the idea of doing package exchanges, “because…when I was inpatient or in residential facilities for treatment getting mail was pretty much the only thing I had to look forward to, and even if you aren’t in a hospital setting it’s still nice getting a letter or a package from a friend and can make a hard day a little bit better.”

Having experienced the devastating isolation of chronic illness and mental illness for years, combined with the frustration of having my CPTSD flare due to the accompanying anxiety caused by POTS and MCAS, I couldn’t agree more with Caide’s point of view on this. Even if I were not housebound, I know I would still be incredibly lonely without the friendships I have formed with others in my rare illness communities, as few people can understand a zebra like a zebra. Even better are the friendships I’ve managed to form with the zebras I’ve met who also suffer PTSD and POTS or MCAS like myself, as the combination of rare illness with mental illness definitely means we’re dealing with an interplay of symptoms no one else can really understand. Just knowing you’re the not the only one who struggles this way helps, but having someone to actually confide in who relates is truly priceless.

Caide and Madi are no strangers to these struggles themselves. Caide, who has hearing impairment and has struggled with an unidentified chronic illness for some time, also deals with chronic anxiety and eating disorder. Madi, who had joined Caide in making Recovery Buddy Parcels a success, is a 16 year old from Missouri with Autism, bipolar disorder, PTSD and an eating disorder. Both Caide and Madi are thrilled to be working on bringing into being a service they’ve long imagined and the success they’ve seen thus far. They hope the project helps to bring awareness about how many people cope with the dual struggles of chronic illness and mental illness together.

When asked what advice they would give to people with similar conditions, they told me, “Recovery is probably the hardest thing you will ever do and cannot be achieved without a solid support system. There are many days where it sucks and you will just want to give up, but it is important to remind yourself that healing isn’t linear and the goal of recovery is progress, not perfection. Without accepting and seeking treatment for our physical and mental health, we would not be able to be where we are today or accomplish future goals.”

Making friendships can be tough, both online and in person, especially for those of us with special needs and social issues. There are always support groups, but the support group atmosphere is not for everyone and it can take a long time to find one that’s suited for you. If you aren’t the support group type, sometimes you can make friends on Instagram, Twitter or Facebook just by posting and commenting, but it takes a lot of time and you have to be pretty gregarious. For those of us a little more introverted, Caide and Madi make meeting that one special friend easy by pairing people based on the information provided in the application and making introductions for you. They even set a few guidelines to follow, such as including “small gifts… handmade crafts, inspirational messages, letters, and small inexpensive toys/stationary/snacks/etc” in packages and making them no more than $10-15 so anyone of any budget can become a Buddy.

Even if you already participate in community support groups, you may still find the idea appealing. Maybe you still haven’t found that one special friend to confide in. Maybe you love the idea of receiving the occasional care package, picked just for you by your special friend. Maybe you never get things like this from family or friends or don’t have many family or friends and just want more. Maybe you simply love letters and postcards and putting together care packages.

Or perhaps you’re more concerned with what you can give to the person on the other end. Becoming a Buddy can also be about what you can get out of giving. Your Buddy will receive all the same wonderful things you do, provided you’re as caring and compassionate a Buddy as he/she/they. It feels good to know you’re helping to brighten someone’s bad days and support them through the dark times in their lives, just as they are yours. The best part is there’s no need for either of you to feel like a burden or a hero, as you’re there for each other facing similar struggles. A Recovery Buddy Parcels friendship is one of many gifts, both symbolic and literal.

A new program, Recovery Buddy Parcels proved very popular its first 6 weeks, matching over 70 pairs of Buddies worldwide. They hope to continue to grow and reach as many people across the globe as possible to help them establish their own support system. If you’re interested in being paired with a Buddy of your own, fill out the application or visit them on FaceBook or Instagram to learn more.

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New Concepts in Neurological and Immunological Recovery

Please note this post contains affiliate links. If you click on one and purchase something, I may receive a small commission, paid to me by the company selling it. There is no additional expense for you. Most importantly, this doesn’t change the fair and honest opinions provided about any product represented on this site, as we will only ever post those we feel good about recommending. Our readers come first! This post was reviewed for accuracy and updated on 4/21/19. Thank you.


Meet Dr. Kendal Stewart, an ENT who specializes in the treatment of Autism. You may ask yourself why on earth I would share videos about Autism on a blog that specializes in connective tissues diseases, but it’s not nearly as much of a stretch as you might think. This is because Ehlers-Danlos Syndrome (EDS), Myalgic Ecephalomyelitis (ME/CFS), Fibromyalgia Syndrome (FMS), Myasthinia Gravis (MG) and other common “spoonie” syndromes all have autonomic and neurological components that are shared with Autism. As you watch through these videos (and I strongly encourage you to watch all four), you’ll see exactly what I mean. In fact, Dr. Stewart himself states that the methods he discusses in treating the problems he’s talking about addressing, are the same exact problems across all diseases with autonomic and neurological factors and they will work for them all.  That’s why he’s not talking just to Autism patients, but to all those with neurological disorders.

While I’ve been aware that nutrient deficiencies are partly responsible for some of these symptoms, it wasn’t until I watched these videos that I understood that some vitamins and minerals can be methylated. Methylated vitamins are fat soluble and can be absorbed through the skin. In some cases, methylation is the only way we can get them into our diets because of common gastrointestinal problems that make it difficult for us to ingest them. He covers this in much greater detail, but he of course also covers exactly what nutrients we commonly lack along with what symptoms they cause. I’ve included all five videos below for you to watch.

Next I’m going to share some links to a few of the products he discusses. I haven’t tried any of them, but I have tried most of the supplements that are in them, so I can tell you the compounds work. Given the pricetag and the fact that Dr. Stewart’s name is on the line if these supplements don’t work as promised, I would be absolutely shocked if they weren’t the highest quality.

Just one tiny example of how much better something absorbs into the skin, I recently started taking Epsom salt baths for the extra magnesium and it’s no big surprise, my migraines dropped from 5-7 a week to 1-2, despite the fact that I’ve been taking magnesium orally for over a year.

I also take D3 orally, but I have to take 10,000 IU a day just to keep myself in the low normal range. That’s an outrageous amount to have to take orally to get to the low range. These things tell me that I’m probably the perfect candidate for methylated vitamins and minerals and I’m sure many spoonies with IBS, gastroparesis and other common stomach problems probably are too. Of course I could also have the MTHFR mutation, which makes it impossible to convert many unmethylated vitamins and minerals to their usable forms. There’s no way to know for sure until I’m tested and the MTHFR mutation is prevalent both in spoonies and autistic people.

I’m only sharing a few of the products that I feel would be most effective for our populations, but if you poke around a bit, you may find others, too:

  • Neurobiologix Calming Cream– This cream contains a number of calming nutrients perfect for dysautonomia patients, anxiety disorders and insomnia.
  • Neuro-Immune Stabilizer Topical Cream– This cream may be of particular interest to anyone with the MTHFR mutation, as it contains 5-MTHF in methylated form. It would also be great for anyone deficient in D and B vitamins
  • Mitochondrial Restore– Packed with antioxidants and minerals, this pill will bolster the immune system, improve cognitive deficits and energy.

Note that many of the ingredients in these supplments are also listed on my protocol. I know they work because they’re already helping me. Some I take at higher doses, as we’re all individual and need to be supplemented at different levels. One size fits all medicine simply doesn’t work. If the above products work for you without modification, wonderful. If not, you may want to design your own protocol, as I have done and am often revising and improving. Here’s some of what’s on it, now: Medications and Supplements

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