Learning About My Autistic Life

Learning about myself, my son, and the differences that makes us unique, not bad or broken. Autistic | Hypermobile Ehlers-Danlos Syndrome | Visual Snow Syndrome | Dysautonomia | Caregiver | Mother | Partner

[diagnosed-weird]

When I first started my journey into whether I could be on the spectrum a few years ago, I scoured the internet looking for people I could relate to. Not medical blogs by doctors that pathologized my life. Real people who could tell my story, or similar stories. I would LOVE to include more than just the YouTubers below, so if anyone has anymore Autistic bloggers, vloggers, or social media persons you'd like to add, share this and add them or let me know and I can add them to my master list.

YouTube:

Stephanie Bethany

Amethyst Schaber

Purple Ella

Agony Autie

Yo Samdy Sam

Neurodivergent Rebel

Olivia Hops

Ellen Jones

Indie Andy

Mom on the Spectrum

Indie Andy

Autmazing

TasselFairy

Paige Layle

Update

Podcasts

Oh, That's Just My Austism; Stories of a Midlife Autism Discovery

I found this one on Spotify, but I'm sure you can find it on other podcast streaming services, as well.

Facebook Groups:

The Zebra Effect

Neurodivergent Rebel - https://www.facebook.com/NeurodivergentRebel

Autistic Women Support Group | LGBTQ+ Inclusive | Safe Place This is a group for women who are AUTISTIC and NOT their FAMILY, FRIENDS, LOV

Autistic Women's Association public group

If anyone has issues with topics discussed or posted in here, please message Joanne Dacomb (Director ) or Maria Shaver (Asst Director ) or a

Life in a Autism World

Life in a Autism World. 28,345 likes · 54,861 talking about this. Page ran by an autistic person. For more autism related content follow @li

Autistic Professor Facebook Group

Women with Autism / Autistic Women and Girls

Because 1 in 4 people diagnosed with autism aren't boys! This is a support group for both autistic women and mothers/guardians with a daught

Reddit:

r/aspergirls

r/AspieGirls

r/aspiememes

r/autism

r/introverts

r/autisticmemes

r/dissociation

r/neurodiversity

r/AutismBlogs

r/AutismInWomen

r/AutisticPride

r/GirlGuideToAutism

r/dpdr

r/aretheNTsOK (for a bit of humor and fun)

Blogs/Websites:

Resources for autistics and their families - Oh TWIST

Autism Resources- some resources for possible comorbidity with EDS and MCAD, online resources for the Autistic by Austistic people, and reso

Autistic Professor is a proudly autistic academic, advocate and mother - sharing her views and learning experiences as a woman on the spectr

Neurodivergent Rebel

Unfortunately, sometimes as Autistic People, when people find out we are Autistic, it can cause us to be infantilized by people around us.

https://autisticadvocacy.org/

https://embrace-autism.com/

Females and Autism / Aspergers: A checklist

This list is meant as a springboard for discussion and more awareness into the female experience with autism. By Samantha Craft Females wi

Tyla Grant

Tyla Grant's personal website

[diagnosed-weird]

I've gotten several asks from you fine folks asking where I've been the last couple years.

Shortly after my last post, I had several family medical emergencies.

My grandfather (89 at the time) was in and out of the hospital.

Then when he got better, my dad was diagnosed with Diffuse Large B-Cell Lymphoma that started in his brain. I spent 10 months taking him back and forth to the hospital, taking my mom back and forth when my dad was admitted, or caring for him at home while he was on hospice. He spent 2 months at home on hospice when he passed in April 2024 at the age of 70.

The literal day after my dad died, my grandfather was diagnosed with another form of lymphoma, aged 90 at that point. Thankfully, his is slow moving and we're in an observe and monitor plan. I've been slowly caring for him more and more over the last 10 months and hopefully he'll get to see his 92nd birthday this July.

I've continued caring for my mom over all of this. I've had my very supportive fiance by my side. My son has grown so much and is becoming a fantastic person as he learns to navigate this world.

It's been a strange 2 years. Death and cancer are bitches. I'm still here. Doing the best I can.

[radical-eve]

[ironbound-oberon]

I have cochlear implants and I can only buy parts to fix them or upgrade then from 1 corporation bc of tech exclusivity. upgrades to get new processors for both ears cost $23k & insurance only covers 90% (and it’s “good” insurance)

cyberpunk dystopia is already here for the disabled. fight for universal healthcare, fight against capitalism NOW.

[athelind]

Cyberpunk dystopia is already here for the disabled.

[diagnosed-weird]

I just got a new wood sticker from @20leagues that I stuck on my crutch from @smartcrutchusa (This is not a paid promotion, I just love these companies) https://www.instagram.com/p/CerdGdAv5E7/?igshid=NGJjMDIxMWI=

[diagnosed-weird]

https://www.redbubble.com/people/DiagnosedWeird #nothingaboutuswithoutus #autismawareness #actuallyautistic #diagnosedweird #redbubble https://www.instagram.com/p/CdXObnbO1b4/?igshid=NGJjMDIxMWI=

[thecosmicautie]

for autistic (and suspecting) adults

here are some resources on autism that have helped me since my diagnosis at 25(!!) years old. hope these help (:

General

Autistic Self Advocacy Network (ASAN)

Welcome to the Autistic Community

Thinking Person’s Guide to Autism

Autistic Science Person

What is Autism?

Que es el Autismo? (What is Autism? For Spanish speakers)

Asperger’s vs Autism

Hans Asperger

Functioning Labels

The Problems with Functioning Labels

I am Joe’s Functioning Label

Why ABA is Harmful to Autistic People

But What About the Good ABA Therapists?

Autism Speaks (why NOT to support them)

Autism’s Race Problem

Autism and the Pathology Paradigm

Psycopathy: Racism and Ableism from the Medical-Industrial Complex

Use of the term “Differently Abled”

Autism and Gender

Autistic, Non-Speaking and Intelligent

Sensory

Sensory Processing Disorder (4 part series)

Interoception

Proprioception

How to Reduce Sensory Overload

Shutdowns

Shutdowns (2)

Meltdowns

Study on Senses in Autistic People

Audio Processing Disorder

Pain Sensitivity

Sensory Differences

Sensory Pain

Traits & Co-Ocurring Conditions

Inclusive List of Traits

Traits (2)

Revised Traits, by an Autistic Person

Executive Dysfunction (4 part series)

Body Language

Insomnia

Fatigue

Fatigue (2)

Fatigue (3)

Communication Differences

Anxiety

Autistic Strengths

Echolalia

Alexithymia

Alexithymia (2)

Autistic Talents

“Regression”

Prospopagnosia

Catastrophizing

Dissociation

Double Standard of Empathy

The Empathy Conundrum

The Benefit of Special Interests

Special Interests

Eye Contact

In Defense of Stimming

More in Defense of Stimming

Scripting

Professional/Self-Diagnosis

Quizzes

More Quizzes

Self-Diagnosis and the Issues with Formal Diagnosis

Issues in Accuracy and Speed of Formal Diagnosis

Difficulties Getting an Adult Diagnosis

Diagnosis in Adults

Adult Diagnosis (Pros and Cons, etc)

Getting a Diagnosis as an Adult

How to Start Pursuing an Diagnosis

The Evaluation Process

Misdiagnosis (pls ignore the unnecessary gendering)

An Article on Late Diagnosis

“Acting More Autistic” After Diagnosis

Adults Need an Easier Path to Diagnosis

Racial Disparities in Diagnosis and Treatment

Structural Racism and Autism

[vittyyluvscookies]

Am I wet? Am I on my period? Did I pee my pants?- next on wtf is going on down there.

[submissivefeminist]

I’m so glad this is a universal wondering among vagina-owners, haha.

[chaotichowlite]

‘Vagina-owners’

[anxiousnerd]

Tune in next time for: Are these menstrual cramps? Am I pregnant? Is it just gas? I wouldn’t have to ask these questions if I didn’t have a damn uterus

[sexylibrarian1]

Next week: Is it a bladder infection? An ovarian cyst? Do I have endometriosis? Oh God please do not let it be cervical cancer! A 20/20 special

[occupyvenus]

Y'all are forgetting the all-time classic: Is it just my period or is my appendix about to burst? Some nice tea and a heatpack or 911 and emergency surgery?

[phantoms-lair]

There is actually a test for that last one!

Place your hand over the pain, press down slightly and release. If the pain doesn’t change by any great margin, you’re fine. If it suddenly becomes some painful you can barely stand, Get thee to an Emergency Room

[taysweetbae]

reblog for the safety of vaginas and their owners

[greedyagain]

The appendix test works with or without a vagina so reblogging for everyone.

[justwritingscibbles]

Reblogging because I didn’t know this and it needs to be shared.

[microwaved-cheese-sandwich]

[cooperblr]

a fellow vagina owner thanks you

[diagnosed-weird]

May 2nd, my type of EDS. I have hypermobile Ehlers-Danlos Syndrome, also known as hEDS. I was diagnosed in 2020 after 13 years from the onset of my first noticable symptoms. hEDS is the only subtype without known genetic markers. There is no cure.

[cinnamon-and-whitenoise]

I can't find my [clothing item] and I need it

[cinnamon-and-whitenoise]

just kidding i found it. [was in obvious location where I looked already twice]

[diagnosed-weird]

My name is Sylvia. Silver. DiagnosedWeird. I am Autistic, I have hEDS. I am a mother, daughter, girlfriend, friend, caregiver, and artist. I make stickers. I advocate for chronic/invisible illnesses and Autism.

[adhighdefinition]

no one ever talks about the part of adhd where everyone in your class has got their group of friends and you’re just there, mindlessly tagging along with anyone who is willing to put up with you for a few minutes. either you’re too loud or too quiet. if you’re lucky, it won’t affect you much. you’re a loner, so what? but then the moments come around where you find yourself yearning to be like the others. you’re not depressed, why would you be? you’re a child who just happens to be a little different. sure, you’re usually the last choice when it comes to groups and you’re rarely, if ever, invited to birthday parties but… it’s alright. everything is fine. or is it?

[adhighdefinition]

for the people questioning whether this really is part of adhd or not

[skipinouterspace]

…..

[zurko48]

[theprideful-deactivated20251201]

"autistic people don't have a sense of humor" well maybe neurotypicals aren't actually as funny as they think they are

[diagnosed-weird]

Create your own graphic about your experience with EDS/HSD here: https://www.ehlers-danlos.org/help/raise-money-in-your-community/mayawareness/ @ehlers_danlos_uk #raisingawarenesstogether #ehlersdanlos #EDSAwarenessMonth #EDSstrong #ehlersdanlossyndrome #zebrastrong #whenyouhearhoofbeatsthinkzebrasnothorses #mayisedsawarenessmonth https://www.instagram.com/p/Cc6QaXuPBw6/?igshid=NGJjMDIxMWI=

[diagnosed-weird]

May is around the corner! Please support DiagnosedWeird, we are fundraising for The Ehlers-Danlos Society on JustGiving for EDS/HSD Awareness Month. https://www.justgiving.com/team/DiagnosedWeird #ehlersdanlossyndrome #ehlersdanlos #EDSAwarenessMonth #myedschallenge #hypermobilitysyndrome https://www.instagram.com/p/Cc53w2JJgLr/?igshid=NGJjMDIxMWI=

[diagnosed-weird]

May is right around the corner, and it's also Ehlers-Danlos Syndromes (EDS) & Hypermobility Spectrum Disorders (HSD) Awareness Month!

Join The Ehlers-Danlos Society and raise awareness, visit www.ehlers-danlos.com/may-awareness

(Mention 3 of your friends or more here)

[diagnosed-weird]

The month of May is Ehlers-Danlos Syndrome Awareness Month. What is Ehlers-Danlos Syndrome and why should you care? Ehlers-Danlos Syndrome, also known as EDS, is a group of 13 connective tissue disorders that primarily affect the quality in the production of collagen. Since collagen helps make up many parts and systems of the body - like skin, muscles, organs, ligaments, veins & arteries, etc., EDS can affect any system and all systems of the body. It's like building a house of cardboard and expecting it to work like wood, but also the table is cardboard, and so is the bed, and the plates, and your shoes. There are currently 13 known subtypes of EDS, of which I was clinically diagnosed with the Hypermobile type. The only type with unknown genetic markers, and the most common subtype of EDS. There is no cure for hEDS, or any form of EDS for that matter. I was not tested for the classic-like subtype, the tn xb gene, as that is apparently harder to test for. At this time, research statistics of the Ehlers-Danlos syndromes show the total prevalence as 1 in 2,500 to 1 in 5,000 people. Recent clinical experience suggests that Ehlers-Danlos syndrome may be more common. The conditions are known to affect both males and females of all racial and ethnic backgrounds. These numbers are just speculative as we don't know the true prevalence. I have spent the last 13 years looking for answers to health issues I have been having. On average, it takes 10 to 20 years for an EDS diagnosis to be confirmed from the onset of symptoms. Most people, without first degree relatives who are already diagnosed, don't get their diagnosis until around age 40. While my case is relatively mild compared to many people I have talked to, I still have daily pain. I have craniocervical instability, occipital neuralgia, eustachian tube dysfunction, orthostatic intolerance -being tested for Postural Orthostatic Tachycardia Syndrome (POTS) so I get dizzy and almost (sometimes completely) faint when I change positions/stand up. Most mornings I have to reset my hips, shoulders, and neck. #hEDSstrong #EDSstrong #EDSAwarenessMonth #PosturalOrthostaticTachycardiaSyndrome #InvisibleIllness (at Tacoma, Washington) https://www.instagram.com/p/CcvcUcoJx_7/?igshid=NGJjMDIxMWI=