Ehlers Danlos & Neurodiversity Research

I’m so excited, a friend of a friend just shared all this:

Dr. Eccles specific research areas are Neuroscience, Psychiatric and neurodevelopmental features of connective tissue disorders, Mechanisms of chronic pain and fatigue.

The quickest way to see a summary of all her 67 published medical research with active links to each is here: https://www.researchgate.net/profile/Jessica-Eccles-3

Some titles of pubs just within the last 2 years:

  • Towards a Neurodiversity-Affirmative Approach for an Over-Represented and Under-Recognised Population: Autistic Adults in Outpatient Psychiatry
  • Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain
  • Variant connective tissue (joint hypermobility) and dysautonomia are associated with multimorbidity at the intersection between physical and psychological health
  • Connecting brain and body: Transdiagnostic relevance of connective tissue variants to neuropsychiatric symptom expression

You Tube Videos:

Names, Face Blindness and Gait

Are you bad with names or do you have face blindness?

What is face blindness anyway?

Depending upon the degree of impairment, some people with prosopagnosia may only have difficulty recognizing a familiar face; others will be unable to discriminate between unknown faces

Some degree of prosopagnosia is often present in children with autism and Asperger’s syndrome, and may be the cause of their impaired social development. 

…treatment should be to help the individual with prosopagnosia develop compensatory strategies. Adults who have the condition as a result of stroke or brain trauma can be retrained to use other clues to identify individuals.

Prosopagnosia can be socially crippling.  Individuals with the disorder often have difficulty recognizing family members and close friends.  They often use other ways to identify people, such as relying on voice, clothing, or unique physical attributes, but these are not as effective as recognizing a face.  Children with congenital prosopagnosia are born with the disability and have never had a time when they could recognize faces.  Greater awareness of autism, and the autism spectrum disorders, which involve communication impairments such as prosopagnosia, is likely to make the disorder less overlooked in the future.

Prosopagnosia | National Institute of Neurological Disorders and Stroke (nih.gov)

I don’t know if I can recognize faces or if I rely on gait, silhouette, voice, hair, clothing (accessories or style).

I can’t tell if my kiddo has it because when we look at photos either the kiddo doesn’t know who is it or someone has said who it is once ever and now it’s memorized.

Is that why my kiddo had such a strong aversion to live action tv shows and videos for so long?

Is that why I hated when my mom changed her hair style growing up – in addition to it being change, did it also make her harder to recognize?

Is that another reason that a limited wardrobe or a signature accessory is useful/preferred?

Do any of you recognize people by their gait?

This study is telling clinicians to look at how autistic kids walk to figure out how they feel since autistic people have such a hard time saying how we feel.

A friend said: faces have so much information on them that I can’t sort fast enough and I like recognizing people by their gait.

https://www.sciencedirect.com/science/article/pii/S1877050915038065

Microbiomes

Small ecosystems.

Our bodies as galaxies or universes.

Our organs as planets in a star system.

The biota as the inhabitants of the planets.

We are as gods to the bacteria and cells in our bodies.

They can tell there is something more, and they do not know what.

They can only respond to the environment around them.

They must do the best they can in each moment.

Each has a task they were born for.

They do their tasks to the best of their ability.

If they are not able to, they let that be known.

If the system is functioning properly, they will either get the support they need or be released from their duty.

If the system is not functioning properly, it will ripple outward until the entire system collapses or the impact is large enough to get the attention it needs.

Focus of Attention

Focus is a skill.

Focus is how we direct our attention*

Attention is the process by which we make observations.

Observations are the process by which one question is answered and another is identified.

I choose to focus internally to be ready to focus externally. This is self regulation.

Dec. 17 2022 log:

*Attention is the most valuable thing anyone can possess.

More valuable than time, money, power and perhaps even love – depending on your definition of love.

The ability to control our attention is the most powerful ability any human has. And perhaps that’s the defining trait of humans. Free will – the ability to choose what to pay attention to and when.

My knowledge of Christianity suggests that at least one religion agrees with that assumption.

Thinking Thoughts

Thoughts are stories we tell ourselves.

We use thoughts to understand the signals our brain sends us.

Not every thought we have is true.

“I’m having the thought that….”

Thoughts have power. Consider the placebo effect.

The way we have thoughts is that there is electrical activity in our brains. Electricity is energy, energy can also be called power.

Thoughts have power.

Will you control your thoughts, or will you let them control you?

We have free will.

We can choose to control our thoughts.

Our life is only predestined to follow the path set for us by our predecessors if we do not pause, evaluate, and choose.

If I am choosing, I can choose to make it harder for my descendants to choose, or I can make it easier.

I choose to make it easier. This is my intention.

Pain and The Bad Place

When I notice that I’m thinking painful and likely untrue thoughts, I think of it as my brain trying to go to or already in The Bad Place (aka: negative sentiment override, assuming the worst, being pessimistic, running a maladaptive schema, bad programming, telling yourself bad stories, feeding the bad wolf, sending out negative energy, trauma response, being triggered, starting to get flooded).

When I am in the Bad Place I can still function, but only just barely. Others see it as me being rude, inconsiderate, stupid, ridiculous, mean, unkind, self-centered, selfish, stubborn, bossy, pedantic. I’m trying to get into the habit of wearing noise cancelling headphones so I can tune out other people until I’m functional again. So far just keeping my mouth shut as much as possible if I’m in the bad place is working ok.

Headphones would help, I’d need active noise cancelling headphones: Bluetooth, comfortable.

Tracing collagen through cell adhesion

Laminin – Wikipedia

Basal lamina – Wikipedia

Fibronectin – Wikipedia

The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders – PMC (nih.gov)

Brain-like organoids grown in a dish provide window into autism (medicalxpress.com)

activity & adhesion (see collagen)

Home page – Sensitivity Research

So if 30% of people are environmentally sensitive (or HSP) and 40+30 are standard or low sensitivity:

What if EDS is or is one of the traits that allows/causes the sensitivity?

What if everyone with Autism is HSP (but not all HSPs are Autistic)? Is the Autism our response/coping with the health problems? Is that why some folks “cure” Autism with diet changes? They are still HSP, but not acting Autistic because they aren’t coping with the health problems caused by toxins (that they are more sensitive to) in their diets?

From WikiPedia:

Collagen is not only a structural protein. Due to its key role in the determination of cell phenotype, cell adhesion, tissue regulation, and infrastructure, many sections of its non-proline-rich regions have cell or matrix association/regulation roles.

Emotional Neglect Timeline?

I’d like to see research on the correlation between mothers going to work and autism in the US – comparison to the UK and/or England would be good too. And also changes to preschool & kindergarten.

This is what I’m wondering – most women in the US had little opportunity other than to stay home parenting their kids until 19??

And families stayed closer together in the US until when? I’m guessing it changed in the urban areas faster?

I know my grandfather moved across the country to get away from his racist family that were descendants of slave owners.

So at some point moms started having less and less support from family nearby and neurodivergent ones had more opportunities to work. So it was easier to send the kids to daycare/school. When daycares, preschools and kindergartens were small and shorter, the caregivers could probably spot the kids that needed some extra emotional support/learning that they weren’t getting at home. But those moms couldn’t work full time because none of them was longer than a half day when I was in kindergarten. Did the schedules expand because more moms went to work? Or vice versa? Same with class sizes? Either way, larger classes meant more kids were getting emotionally neglected, and instead of 1 or 2 in 15 kids needing extra support and kindergarten being pretty much all social and play based, now they are classes of 24-30 running the full school day and then maybe aftercare and way more of them are struggling and oh yeah, now they push reading and academics that early. Anyone remember those “everything I need to know I learned in kindergarten” posters? It was true, and sadly not so much anymore. And with families dispersing more, grandparents and aunts and uncles and cousins aren’t around to take up that slack either.

I know my grandma worked and had 5 kids. And my mom had to work too. I remember there were so many of us “latchkey kids” who were unsupervised and alone every afternoon after school, from maybe 5th or 6th grade through high school. Maybe earlier. I think I might have been walking my brother the mile home from school when I was in fourth grade and he was in first?

Before I had my kiddo I had learned that having a primary caregiver for at least the first year, and preferably the first three was important. I didn’t learn that I needed to learn to self regulate, and that by not working at eye contact or babbling back that I was neglecting my kiddo. I babywore, I breastfed until 3.75 and I still neglected my kid. And I’m still doing it now because it takes so much effort to self-regulate. I’m doing better, but I can still see I have a lot of room for improvement.