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:

Autistic Inertia vs ADHD?

PDA and/or ADHD (executive function problems) – It took reading a bunch of comments to realize that Autistic Inertia is probably just comorbid ADHD executive function challenges.

How to ADHD on YouTube has a lot of great videos on various ways to manage problems like this. Wall of Awful, Motivation Bridge, Procrastination, tools like SunSama, Pomodoros, Bullet Journals, body doubling (co-regulation for adults), accountability buddies

More of the same:

What is autistic inertia? https://autismawarenesscentre.com/what-is-autistic-inertia/

I’m not sure that giving things a new name is helpful. It’s executive function difficulties no matter what the “reason” is and know that means it’s easier to find solutions.

Schemas or Distortions

Stub

Homework assignment, identify my maladaptive schemas/cognitive distortions

All or nothing thinking. Perfectionist – if not perfect then why bother

Black & white thinking. – using extremes, always, never, ever, completely

Mind reading

10 common cognitive distortions – mental shortcuts or assumptions about how the world works that helped you survive but are no longer supportive

18 maladaptive schemas – thought structures that helped you in one or some situations but are now harming or restricting you.

18 Early Schemas Defined (schematherapy.com)

Self-Care

I woke up at 5 in a lot of pain. I realized that to learn to be vulnerable I needed to learn to stop masking my physical pain.

I started writing out my pain stories. I started to get sleepy which usually happens when I’m REALLY trying to avoid something. My rib was really painful though and heat wasn’t helping. I was able to play some YouTube videos that gave me some instant pain relief.

Next step, how do I make sure I actually do exercises regularly?

I need to work dance/song into it. Probably sing the instructions while doing the exercises to turn them into dance moves. Also get out the foam roller.

And I need to set up a music playlist to move me through the day.

I can do the wall arm one while I supervise my geriatric cat eating. And the shoulder squeeze I can do anytime and helps with the pain right away.

W.R.A.P. Wellness Recovery Action Plan

I just found out about this. It’s what I’ve already done as my kiddo’s transition checklist.

I just need to make mine now.

WRAP – Wellness Recovery Action Plan: Ep 1 – Beginning Your WRAP – YouTube

Worksheets:

Preparing to Create Your Personal Recovery Plan

Before you begin to write out a plan of action for your recovery process, you need to first assess your current status and decide upon your major needs and goals. Here are some questions to ask yourself:

  •  What are my motivations for making this change? Keeping my job, my family, my friends? Improving my self-esteem and regaining pride in myself and my behaviors? Feeling better and becoming physically healthier? Other reasons?
  • What challenges will potentially be my biggest barriers? Are my coping skills currently limited? Do I have sufficient support systems (family friends, support groups) in place for times when I may need assistance and encouragement? Do I have legal or financial issues to address as part of my plan of action?
  • Can I commit to following the steps I create in order to change my life? Can I honestly say that I am ready to make a major, positive change in my life and that I am willing to do what it takes to make it happen?

If you can identify your motivations, understand your challenges and recognize that the outcome will be worth the effort, you will be ready to create your plan.

Components of Your Personal Recovery Plan

When you are ready to write your plan, make lists of the elements that you will want to address:

  • Personal triggers (places, circumstances, people) to avoid
  • Specific strategies for addressing each identified trigger situation
  • Ways to improve self-care (relaxation strategies, socialization opportunities, health and wellness strategies – sufficient sleep, good diet etc.)
  • Coping skills you need to learn or to improve (anger management, emotional self-regulation etc.)
  • Relapse prevention strategies (go to support group meetings, have a “sober buddy,” attend counseling, etc.)

Writing Your Personal Recovery Plan

You can create your written plan any way that feels most natural to you. In general, you’ll be making “promises” about the positive changes that you plan to implement, in order to uphold your recovery and remain abstinent. In addition, you may also want to commit to certain consequences that you will be willing to incur, should you not live up to your promises. You will also want to detail specific steps that you will take to address each problem or issue that is a threat to your sobriety.

Developing Your Personal Recovery Plan (Template Included)

Autistic employee goes viral with office sign that breaks down ‘bad communicator’ stereotypes – Upworthy

I’m autistic.

I prefer direct, literal and detailed communication

If I am:

Not making eye contact

Not greeting you back

Not understanding your social cues, etc.

There is no malicious intent. It is the autism.

Thank you for understanding.

https://www.upworthy.com/autistic-employee-called-a-bad-communicator-responds-by-hanging-an-important-sign-in-the-office

“This should be the norm tbh!! very proud of you for stating your boundaries and needs clearly,” Alastar wrote. “I wish everyone had signs telling me how to communicate tbh,” Bro added.

“How is it that we prefer direct, literal, and detailed communication, but somehow WE’RE the ones with a communication issue???” Reading cosmere! wrote.

https://www.upworthy.com/autistic-employee-called-a-bad-communicator-responds-by-hanging-an-important-sign-in-the-office

“The funniest thing about the comment section of my autism sign video is the people who are asking me, ‘Are you self-diagnosed? Are you formally diagnosed?’” he said in the video. “Do you think neurotypical people would make a sign like that? Do you think that would happen? Do you think a neurotypical person would do that?”

https://www.upworthy.com/autistic-employee-called-a-bad-communicator-responds-by-hanging-an-important-sign-in-the-office

Do My Dailies

Daily schedule, routine, rhythm, agenda, care tasks – call it what you will.

Slow Down to Speed Up

Do each thing completely and well.

To focus, find the gratitude, and remember the reason – connection and care.

Connect with yourself to know how to care for yourself. Connect with your environment to care for it – it’s your habitat and caring for it is caring for yourself. Your body, the place you are right now, your home, your neighborhood, city, county, state, country, continent, your planet.

Start from the center and work outward. From the seed grows the tree, and its full reach is unseen.

Documentation is key. If you don’t have time to write it down….you’re doing too much. So I’m documenting.

  • Wake up
  • Take medication (should be in waist pouch from night before)
  • Dental care either time based (every 12 hours) or cue based (after morning bathroom break)
  • Any other required self care
  • Care for infants or pets next as they cannot do so for themselves (for me that’s cats)
    • medication
    • water
    • food
    • litter
    • grooming
  • Document anything that no checklist exists for yet.