You’re not Autistic. Or HSP. Or anything except Human.

You’re a human with the environmentally sensitive neurotype & likely genotype.

If you have Autism – then you also are probably suffering from some number of these issuses:

  • epigenetic changes caused by illness, trauma, stress or inherited
  • nutrient deficiencies
  • attachment disfunction or trauma
  • sleep deprivation (tongue tie, nursing, chewing – effect of jaw development on airway)
  • impaired microbiome
  • poor interoception
  • poor proprioception
  • emotional neglect
  • convergence insufficiency
  • insufficient exercise
  • insufficient time in nature
  • Ehlers-Danlos
  • MTHFR mutations (add info on diet changes, when everyone ate liver, it didn’t matter)
  • probably other stuff I’ll add as I find

Your intellect, creativity, independence, etc. are all part of your neurotype, but if you can’t connect or communicate with others, that’s something you can work on and improve – and most likely therapy isn’t the way to start – figuring out your particular health problems and addressing those is. Starting with sleep.

With the rise of chemical farming, both chemical exposures and also lack of nutrients, Autism has increased. With the introduction of sugar and processed foods, Autism has risen.

There have always been Neurodivergent folks, they are the ones driving the advancement of society. And without Neurotypical folks, society would collapse. We’re in the process of fixing things by way of breaking them first to figure out how they work.

Before humans did things that worked, that were discovered by trial and error experimentation, but didn’t know why it worked. Examples being much of indigenous knowledge, and eastern knowledge.

The main example I know of is acupuncture & qi. Western medicine only recently realized that the fascia maps to the energy flow of qi. And sensory signals are energy flows/transfers.

Permaculture with its restorative agriculture that can restore the soil-food web and our health is also the solution for climate change. Human culture and the human race are evolving into a global community, and right now we’re suffering the growing pains. If we can learn to truly care for ourselves, then we’ll learn that to do so, we must care for others and our planet.

POTS and not the cooking or herbal kind

Here’s some info on POTS (Postural Orthostatic Tachycardia Syndrome) – which I think might also be called Vasovagal Syndrome – at least it sure sounds the same to me, possibly the vasovagal one is missing the other related symptoms. Either because they aren’t there or just the connection isn’t being made since they aren’t what a cardiologist might be looking at. 

Postural Orthostatic Tachycardia Syndrome (POTS) (for Parents) – Nemours KidsHealth

I didn’t discover it until 2005-2010ish, but looking back it explains my temperature intolerances, fainting, dizziness, vertigo, fatigue, tunnel vision, chemical sensitivities, etc. and those either developed or got worse during my teenage years.

Being pregnant and having the associated increased blood volume was the best I ever felt and I finally figured out the wall of fatigue the first couple days of/before my period is from the drop in blood volume.

It also addresses the gas and nausea I would have that was one of my worst symptoms. I didn’t figure that out until much later and even then I didn’t know why, it took my ADHD doctor to explain it to me because he was monitoring my blood pressure while we found the right dosage of Adderall. Turns out that the side effect of increased blood pressure is super helpful for me and I was able to reduce my Midodrine by half or more.

I only figured out my POTS because I kept seeing the acronym when I was looking up EDS info. When I went to look that up it was another epiphany moment for me.

Syncope can trigger your sympathetic nervous system (panic! the brain isn’t getting blood to provide oxygen!!), and then when you recover that can kick off the parasympathetic system (rest & digest – time to dump some digestive juices into your empty stomach!) which can then result in gas, bloating & nausea.

My umbrella hypothesis about sensitivity, Autism and neurological differences

Just found this October 23, 2022: How Childhood Trauma Leads to Addiction – Gabor Maté – YouTube

WE EVOLVED to NEED CONNECTION and AUTHENTICITY

Lacking those needs, we lack health.

———————————————————————————–

This is my rough draft, I’m throwing things out before they are polished to get the ideas out in the world sooner.

HSP 20%-30%

So if Neurodivergent (ND) = HSP

Then ND = 20-30% and Neurotypical (NT) = 70-80%

OCD, ASD & ADHD are not neurotypes, they are collections of challenges that ND/HSP have or they are symptoms of an underlying problem (impared sleep for example) or lack of certain skills.

For example:

  • Emotion regulation is a skill. NT tend to learn it innately, ND often need direct instruction, which they may or may not get as children. (ND tend to learn scholastic skills innately instead, but NT need to be taught that)
  • Executive dysfunction is often impaired by sleep issues which can stem from many sources. NT with sleep problems also have executive function challenges. Sleep problems are just much more common and harmful (larger impact per degree of problem) for ND. Part of that goes back to the self regulation skills and whether they were taught or not, such as good sleep hygiene and routines.
  • Anxiety is common among ND, that’s actually their role – to be the cautious future thinkers. Again it comes back to learning emotion regulation skills to manage the anxiety (Think Cassandra of Greek myth – if you’ve identified with her, you’re probably ND)
  • In OCD the ACEs (adverse childhood experiences) have tuned their brain to be even more sensitive to danger and the compulsions are a coping tool. Either they are hyperfocusing on something to avoid the pain of the anxiety or they are using a strategy to calm themselves or it was a self preservation habit or something along those lines
  • ADHD and Autism: Aspergers or ADHD? The answer will surprise you. – Penelope Trunk Careers
  • ASD difficulties in social interactions and communication – again just a skill not taught that NTs pick up automatically and NDs don’t, and also there has been research showing that ND communicate fine with ND, it’s just the ND-NT communication that is challenging.
  • ASD repetitive behaviors are again compulsions like OCD, they are a coping tool – so adverse events paired with a lack of (socially acceptable) coping skills/tools
  • ASD intense interests – again, this is the role of ND/HSP – I would guess that every advancement ever was made by someone ND, either because they didn’t realize not to do something just because no one else did it or because they were curious. NDs with good social & emotional skills have intense interests/are deep thinkers (see HSP descriptions) – they just mask or control them successfully when interacting with NT folks or a mixed crowd.
  • unusual responses to sensory stimuli – Again this is just the role of the ND – high sensitivity for danger detection paired with a lack of coping tools or skills – NDs are the canaries in the coal mine of the human race (link rise of Autism with chemical farming, smoking, sitting, sugar, processed foods, diabetes, Alzheimers, microbiome)
  • The reason people have been able to “cure” autism is because they have been able to teach the missing skills or to correct an underlying health problem caused by the high sensitivity, such as intolerances to gluten, food coloring, etc. The person is still ND, but the problem behaviors (maladaptive coping tools, missing self-regulation skills, dysregulation caused by a health problem) have been resolved.
  • Ehlers-Danlos has a high co-morbidity rate with ASD
    • It’s a collagen disorder, the hypermobile type is the only one they don’t know the genes for the last time I checked – which would make sense if they are trying to compare people who have EDS and are diagnosed because they are suffering from it, and people who don’t have it + people who have it but are undiagnosed because they are not suffering from it or it has been labeled something else like Chronic Fatigue Syndrome, Fibromyalgia, etc.
  • One of the symptoms of defective collagen is increased tissue permeability
    • That could be a major factor for the sensory sensitivity of ND (HSP)
    • Again, there are things that can be taught to reduce the risk of challenges, there are those who innately figure them out or are taught in childhood and they often go undiagnosed unless it causes problems later in life (arthritis, joint pain, etc.) or they are misdiagnosed because EDS is “rare” – even though they know it’s a dominant gene????

So that leaves us with two things:

First – how can we test this hypothesis?

Second (wish I could recall what I meant, maybe the “what should we do about it?” part?)

Research studies that screen for EDS (somatic traits), HSP (mostly cognitive traits), OCD, ADHD & ASD, ACE & PCE scores and brain scans.

Participants should include large cohorts that are already diagnosed with one of the above issues and screen for the rest in addition to NT controls.

ADHD symptoms arise from executive dysfunction,[6][7][8] and emotional dysregulation is often considered a core symptom.

https://en.wikipedia.org/wiki/Attention_deficit_hyperactivity_disorder

Obsessive–compulsive disorder (OCD) is a mental and behavioral disorder in which an individual has intrusive thoughts and/or feels the need to perform certain routines repeatedly to the extent where it induces distress or impairs general function

Risk factors include a history of child abuse or other stress-inducing events; some cases have occurred after streptococcal infections.

Obsessive–compulsive disorder – Wikipedia

The autism spectrum is a range of neurodevelopmental conditions generally characterized by difficulties in social interactions and communication, repetitive behaviors, intense interests, and unusual responses to sensory stimuli. It is commonly referred to as autism or, in the context of a professional diagnosis, as autism spectrum disorder (ASD), but the latter term remains controversial among neurodiversity advocates, neurodiversity researchers, and many autistic people due to the use of the word disorder and due to questions about its utility outside of diagnostic contexts.

Autism spectrum – Wikipedia

Having a partner is overrated if you aren’t happy.

I replied:

Only someone with autism would say that. Having a partner is absolutely NOT overrated. Steering one’s own ship IS overrated. Wanting to do everything how we want to do it at the cost of making compromise to share life with someone else is the definition of autism…The human race would not have survived if it were normal to want these things.

She replied:

[I had] a narcissistic/borderline mother who made emotional chaos normal in my childhood…So I picked two husbands where emotional chaos was normal. Then I got sick of feeling emotionally drained and got out. Since then I’ve navigated carefully to protect my serenity. In therapy again now to expand my thinking around this and more. I don’t think I’m autistic. 

I replied: You’re autistic. Here’s why:

Self-analysis is autism

Just because you can spew DSM stuff doesn’t mean you’re not autistic. In fact, analyzing ourselves as a hobby is a marker of autism — we are constantly trying to understand how to world works, and how we feel comfortable. Because actually we can’t do either of those things. And the real reason we are out of step is that our brain makes us blind to ourselves. We see other people clearly but we don’t see ourselves.

But wait, all that analysis has payoff. People with autism are better writers than everyone else, because we spend our life memorizing dialogue and replaying it in our heads trying to figure out what just happened. ]….

Autism – Penelope Trunk

[Borderline personality is autism

So many autistic women think they are not autistic but “just recovering from a mother who has borderline personality disorder”. But autism and BPD frequently go together and scientists think BPD is so similar to autism that it’s another autism spectrum disorder. BPD is caused primarily by a mother who has BPD and autism; her erratic parenting causes her autistic daughter develop BPD.

Narcissism is autism

Narcissism and autism are so similar that scientists are thinking narcissism might be a subset of autism so we could just delete the narcissism category from the DSM.

There are many published papers explaining why narcissism is part of autism. You don’t need to know every piece of research but you do need to know that if your therapist diagnosed your parents or your spouse with narcissism it’s because the therapist doesn’t understand autism, and you have it, and that therapist can’t help you.

Divorce is autism

When the commenter writes that she’s been divorced twice. That’s probably because she decided the men have a problem (narcissism) and she has a problem (raised by a mom with BPD) and she felt depressed. But depression is part of autism, regardless of who we pick to marry, and staying married protects against the worst depression.

Autistic marriages are likely to end because we have the most emotionally compromised dating pool. If you’re not autistic you sort out people who violate all the social rules for dating. So autistic people are left with a dating pool of each other, and we don’t even notice there’s anything wrong.

Loneliness is autism

That is, until the honeymoon glow turns to marital glower and loneliness seems hard to separate from choice of spouse. I’ve done that. But once you get divorced, you’re forced to diversify your ideas about loneliness.

I used to think loneliness was something I had from not being around enough people, and that’s why I feel less lonely when I write on my blog. But I discovered that loneliness is a neurological disorder. Loneliness isn’t caused by a lack of social support. Loneliness comes from chronic illness or social anxiety. And the only way start feeling less lonely is to first acknowledge it’s an autism thing.

Interestingness is autism

So, yeah, I do think the commenter has autism. She must be really interesting to have appealed to her ex spouses because she — like me — is totally interested in her own stuff. So we are magnets for people who like interestingness. And wanting life to be interesting is not normal. There are higher values than that. But not for us.

So it’s no wonder that adults with autism know more about autism than mental health professionals. And if you want to know if you have autism, don’t ask a professional. Ask someone with autism. And if you want your life to get better after you find out you have autism, talk to people who also know they have autism. You get really smart about yourself really fast once you have that label.

Autism – Penelope Trunk

amygdala vs prefrontal cortex

my hypothesis is that there is a common neurodivergent brain type identified as HSP, also seen in non-human populations and that OCD ADHD and autism are conditions that affect that neurotype based on: chemical exposures, childhood ACE or PCE and epigenetics. Especially with chemical exposures, ehlers-danlos seems to be also tied in, as that may make tissues more permeable and more susceptible to chemicals creating epigenetic changes, also might support the sensitivity trait

Disabled by the environment or the social model of disability

survival and success through diversity

Societal roles and functions of neurotypical and neurodivergent

Two sides of any trait, for example: anxiety stems from future thinking, future thinking allows planning for the future – for example this climate crisis

Maslow’s hierarchy of needs versus the Blackfoot Native American system

United States medical system is broken. The education system is broken. The legal system is broken. The economy and government are broken.

This is how humans learn – through failure. We break things to figure out how they work. And with that understanding we can repair or rebuild better.

Mental health is physical health – the brain is part of the body and what you eat goes into your body and is what your body uses to run itself, so food is medicine.

If the soil is lacking nutrients, then the plants will also, and so will we or the animals we eat who eat the plants. Without the nutrients we need, our immune systems end up in overdrive or we end up with “neurological” disorders because we don’t have the components needed to work properly. Our immune systems get overwhelmed or confused and we end up with inflammation, which ends up being the root of so many diseases.

Notes from Stanford Neurodiversity Summit:

Connective Connections

So looking up stuff about abdominal pain/liver – I come across hemacromatosis – then it turns out that links to Fleischer Rings in the eye – which are associated with Keratoconus. So digging more on that I come across this pdf, which has this info:

Although CN6 palsy is most common throughout the lifespan of all patients, in patients with EDS, exotropia, possibly due to CN3, is the most common palsy. Esotropia is going to present most often with fusion and near, and uncrossed diplopia at far, or a divergence insufficiency. Cranial nerve 3 trouble, even partial CN3 which will leave the lid not involved, and perhaps have such a small hypotropia that you won’t see it, with no pupil involvement, will generally cause more problems at near than at far. The reason being that it’s harder to fuse the images at near, so instead of getting a DI, as you would with a CN6 palsy and diplopia at far, you will get a CI with diplopia at near with problems with the medial rectus, which is innervated by CN3.

James Kundart OD, MEd, FAAO, FCOVD-A
https://online-ce.opt.pacificu.edu/course_downloads/1411046365ehlers-danlos%20in%20the%20eye.pdf

It’s much easier to find info and connections than it was a decade ago, partially due to people sharing information online and a good part towards Diana Driscoll who James mentions elsewhere in the above pdf. I found her when she was still just writing for her blog Pretty Ill

I have EDS, I believe my kiddo does too, and we recently finished his CI (convergence insufficiency) therapy. And another immediate family member has double vision. Eventually I’ll test myself for CI too. I definitely think it’s a possibility, because when I tried doing the CI exercises with the kiddo, they were difficult and painful for me also.

My spouse has hemacromatosis in his family and keratoconus himself, which is why I even went down that rabbit hole and found these connections.

EDS is NOT a connective tissue disorder. It is a COLLAGEN disorder, connective tissue just being one of the most obvious traits/challenges since it is the main structural component of connective tissue. Collagen is present in pretty much every body system (I actually couldn’t find one that had none):

Collagen is a protein. In fact, it’s the most abundant protein in your body. There are at least 16 types, but the most common are Type IType IIType III and Type IV.

Collagen is made up of strong and stable fibers that work like glue to hold things in your body together and strengthen them. You can find collagen everywhere, from head to toe, including hair, muscles, bones, tendons, ligaments, organs and all over — in your skin. Collagen also creates elasticity that allows us to move, bend and stretch.

Dr. Liz Liotta
https://www.healthywomen.org/your-health/collagen/what-is-collagen-and-what-does-it-do

So it can cause all sorts of problems all over the place that get written off as unknown causes or lumped into a syndrome (a syndrome is just a collection of symptoms that appear together – which they may or may not know the cause of).

Pregnancy update

So turns out the up side of being pregnant with Ehlers-Danlos is that I only had reflux (and shortness of breath when my stomach was full of gas) for a week or two. Then my rib cage expanded again and it went away. I’ve been doing some isometric upper body exercises my chiropractor recommended, that plus avoiding lifting too much and wearing my rib belt seems to have the back pain from the rib expansion under control. I finally thought to measure my rib cage and I was either a 32 or 34 in bra band before and am up to 35.75 now. It’ll be interesting to see how quickly it drops after the baby comes (if it does, the chiropractor might have to help with that). My ribs definitely went through two levels of expansion, since first I couldn’t fit (band wise, not cup wise) into my regular bras, and then the ones I got to sleep in that were loose fit just right. Those sleep ones are now tight, but it works out since they help hold my ribs in place some, so I don’t always have to have my rib belt strapped on.

My stomach finally got big enough that I had to go back from the new 4″ rib belt to the old 2″ rib belt. I use the 4″ one around my hips sometimes, not that it seems to help a ton. I also had to get the seat cushion with the tailbone cutout for riding in the car and sitting on chairs when we’re out an about (especially restaurants). It definitely is a big help since my tailbone was starting to get pretty painful.

Recent updates, about 3 weeks ago my hips went from being fairly stable with the pool exercise and weekly chiropractic to needing my husband to adjust them daily. And earlier this week they got looser again and now need adjustment multiple times a day. Yesterday I started getting this weird thing where my right hip gets hot. I don’t know if it’s a blood flow thing or a nerve thing. Thankfully it’s not painful, just odd.

I’m now 40 weeks and 6 days. No obvious signs that he’s going to make his appearance, but my mom’s labor with me (first child) was 6 hours, so I might not get much warning when he decides to show up.

Varicose veins and piles are my other issue, but they don’t itch/hurt and are pretty normal during pregnancy, so I’m not sure I’d blame them on the EDS. Same goes for the allergy developments (can’t wear metal rings, had to buy 100% cotton underwear and pants). I do finally have a new craving – peanut M&M’s. It’s not super strong though, and I’ve always loved them, so liking bananas in the first two trimesters is still my “weirdest” food craving.

I’m also in the last month getting more edema in my legs down to my ankles, but my feet haven’t spread out or swollen yet – though I don’t spend a ton of time standing, they get painful pretty quickly if I do. Especially if I don’t wear my slippers or shoes to provide cushioning. I think I’m pretty safe to assume my shoes will continue to fit after the pregnancy.

I don’t think I’d consider myself a pregnancy unicorn – I’m not having any of the glowy happy earth mama woman power type feelings, but I’m definitely a pregnancy zebra in that it’s been really physically easy. But only because my husband is able to support us so I don’t have to work, and because he’s been able to do 100% of the driving. Those two things have allowed me to avoid doing anything to exacerbate my joints – otherwise I’d probably have been in severe pain throughout the pregnancy. I over did it a few times getting the yard/house ready, so I have a good idea of how miserable it could have been if I’d been in pain like that daily.

I’ve been lucky that the increased blood volume has almost completely cleared up my POTS – gonna miss that when it goes away, but I’m hoping it doesn’t come back as bad as it was now that I’ve been exercising in the pool.

My migraines cleared up around the middle of the second trimester, we’ll see if I get lucky and they stay gone.

Even my digestive system is doing better than ever – most likely due to eating a bit healthier, all the fiber pills, magnesium, pre & probiotics and HCL.

So all the things I thought pregnancy would make worse, actually got better instead except for my joints. And even those were improving more than pre-pregnancy (with the pool exercise) until this last month. Gardening is the only thing I’ve really missed (I hate driving anyway) that I’m looking forward to getting to do again once the relaxin production goes back to normal pre-pregnancy levels.

Ehlers-Danlos with a side of pregnancy

The new rib belt is helping a lot. I was starting to toss and turn all night from my ribs hurting laying on my side (no laying on your back after 20 weeks), and it seems to be taking care of that for now. My hips still hurt, but I only have to turn over once or twice a night due to that.

Trying to get the recommended 80-100g of protein a day that the Bradley method recommends to hopefully prevent premature rupture of membrane  (prom).

And finally interviewing doulas, which I had planned to do a month ago but got sick instead.  Although many are only on call after a certain number of weeks, I’m relieved to find it’s not a universal policy since preterm labor is also a risk. 

Pregnancy update

The upper back pain is all from my ribs coming apart. Been trying to wear my rib belt more and plan to get a second one for the lower portion of my ribs.

Other than joint stuff I had a few days of very mild but constant heartburn.

Can’t wait to see the chiropractor tomorrow.