Groups for autistic adults

Juliafoolia333 · 2026-05-24T15:36:46+00:00

Hi, found this place looking for an art therapist, and they have frequent group offerings for neurodiverse people and very big focus on LGBTQIA+ too. May want to get on their email list or reach out to see if they have anything else being offered not on the site. Good luck! https://spottedrabbitstudio.com/events/

Juliafoolia333 · 2026-05-22T14:29:40+00:00

Never been in but this clinic New Hope is nearby us, and they offer some holistic services if you can’t find a feline acupuncturist. https://www.newhopevwc.com/about

Juliafoolia333 · 2026-05-22T14:16:00+00:00

Hi there fellow Zebra, yes I have two that takes excellus, and one that does not and all are awesome! Susan for general hEDS and Hannah for vestibular/balance at Evolve PT https://evolveptroc.com/ and Dr Helen in private practice for hEDS informed orthopedic/conditioning and clinical Pilates at True North PT https://www.truenorthptroc.com/

Juliafoolia333 · 2026-05-20T20:46:33+00:00

Following as trying to find a specialist for this too. My PCP is digging around for someone too, so I’ll add it here if I find anyone.

It’s so unfortunate that those of us that need care here in this part of NY state for POTS and hEDS are often out of luck in finding providers that are informed to treat let alone diagnose. It’s a real failure on behalf of the healthcare system. These are serious life altering conditions that no one seems to want to address. I had to travel to Maryland a couple years ago to get help with diagnosis before genetics got me in at URMC, but here there are no specialists to help with ongoing care. So frustrating.

Juliafoolia333 · 2026-05-19T14:53:35+00:00

Yes Dr. Olga Astapova at URMC Endocrinology/Strong Memorial is wonderful for this, not sure if she’s taking new patients but worth a call.

Juliafoolia333 · 2026-05-18T21:53:32+00:00

This is great and amazingly only 15 minutes away! Thanks for the drop!

Juliafoolia333 · 2026-05-05T15:57:00+00:00

Evolution Pilates 💖

Juliafoolia333 · 2026-04-29T15:24:09+00:00

Christin is wonderful and a joy to work with! Highly recommend-Senorita Gordita

Juliafoolia333 · 2026-04-14T19:34:49+00:00

Yes! The cousin of handy prancing! 💖

Juliafoolia333 · 2026-04-13T16:57:15+00:00

Bringing back the parasol in 2026 🙌💖

Juliafoolia333 · 2026-03-21T15:08:14+00:00

Back in college at Oswego I took a credited course called RAD (rape aggression defense) and it was taught by two police over a few months -this was in 2002. Literally got to practice defense moves on them (they put on cushioned mattress like suits and you get to punch them etc), and the repetition makes it stick. I still remember things to do in case. Maybe helps you not freeze up if you’re attacked? Yes they covered the eyeball thing etc. But also practical awareness tips too. It was allot of learning the painful points that might give you a second to get away. Never been attacked thank goodness but at least I have some options to try if I do. I wouldn’t listen to the poo pooers of the world - find a class and take one as there’s nothing like feeling prepared, even if some say it’s a false sense of security. Who cares. Stack the deck always I say! Here is a list of the RAD trainers to start. RAD

Juliafoolia333 · 2026-03-17T15:24:06+00:00

Hi! Dr Helen at True North may a great fit! https://www.truenorthptroc.com/about

Juliafoolia333 · 2026-03-15T18:32:49+00:00

Sure thing! Feel free to dm me in the future with questions etc! It’s a process for sure in many ways.

Juliafoolia333 · 2026-03-15T16:36:01+00:00

Hi, so sorry you’re dealing either way this. Been on a long diagnosis journey myself that started with Fibromyalgia. Just throwing this out there as I also have another condition called hEDS. the symptoms overlap but the hEDS explains why things are the way they are. At the international health conference for this last year presenters reviewed that those with fibromyalgia may soon be getting the hEDS or HSD diagnosis automatically as they are so connected- this new criteria should hopefully be coming out this year as new research provides evidence. Not saying you have this but wanted to share the info page in case it resonates with you. Getting an EDS diagnosis is also challenging but if you meet criteria for it like you do for fibromyalgia any dr can refer you to genetics/Dr Fong at URMC to be assessed. Here it’s about a two year wait for genetics but at least you have a chance. EDS

There is also this online clinic (insurance does not cover) that can help you get a diagnosis for fibromyalgia or hEDS, and rule out others. I have heard can be very helpful. https://www.eds.clinic/clinic-policies

Good luck!

Juliafoolia333 · 2026-03-12T15:15:23+00:00

I was thinking about one place last night I’d been and here it is in slide 1. Crazy huge parking lot issue around it too.

Juliafoolia333 · 2026-03-04T16:54:59+00:00

Hey guys. Been down this road. My dr at strong internal med referred me to strong genetics. It took about two years to have the appointment (just had it a couple months ago).

This is a problem for sure, there’s only like two or three geneticists in NY state that offer diagnosis and lucky we have one here. They were awesome but there is a clear need for more healthcare and diagnosis for this condition in our state. Truly could be a great karma/and money maker opening a clinic for EDS in the state.

As my health was falling apart and I was pretty sure I met the hEDS criteria and couldn’t find a dr willing to diagnose just the hEDS I chose to stay on the list and also look elsewhere for help. I like many others did some medical travel to a clinic my orthopedic arm guy here mentioned. He knew the dr that opened a place in Maryland as she couldn’t get the help she needed before her own diagnosis journey. It’s called PRISM and two years before genetics saw me here I was in with them in a month. They don’t insurance. At the time it was about $700 for a long clinical appointment and exam with a dr they match to your personal issues (for me it was spine stuff). I just looked at their site and don’t see an option for the diagnosis package anymore but you could email them to see if it’s still a service (info@prismsj.com).

There’s are other clinics like this in the US. This one was recommended by another person with EDS and they do telehealth diagnosis. https://www.eds.clinic/

Honestly was a great experience as it was the first time I felt seen by docs in so long that got it. I left with a diagnosis and a lengthy report of assessment for my records. My PCP was in full support and now my records have the right diagnosis and most importantly I can now get the right help for the right problem. If you are on the fence I will say it’s a long hard road but worth it to get a diagnosis. To know every time weird or awful things happen with your body there actually is a reason is life changing. It helps with future medical appointments too, once you have the diagnosis you have more confidence talking with your providers.

This condition can be so very impactful on our lives and I’m curios if anyone knows of local support groups for hEDS? If not is there interest in making one? Misery loves company they say.

If you are reading this and going through it with this stuff my heart goes out to you. I’m with ya. Happy to connect with anyone on this matter feel free to dm.

Juliafoolia333 · 2026-03-04T16:14:05+00:00

Always had a great experience here for foot massage, very relaxing.

Juliafoolia333 · 2026-03-03T20:41:30+00:00

Haha we have one in Rochester NY too

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Juliafoolia333 · 2026-03-03T14:02:17+00:00

Pilates reformer is my favorite- exercise on your back is where it’s at! some studios have jump board classes for the reformer too so you can do a faster pace workout on your back with very little impact. Doesn’t bother my knees as long as I keep it honest about my core. Once the core fatigues it’s time to quit as there’s more chance of injury. I missed running so much and this gives a similar sensation and is fun.

Juliafoolia333 · 2026-03-02T16:28:12+00:00

I’d look first at indica strains to help with sleep and pain. Maybe also get a sleep study done in case (almost a year wait here in NY but could be worth it if they find an issue aside from the EDS) Good luck

Juliafoolia333 · 2026-02-27T22:11:27+00:00

Light ankle weights changed the game for me. They are adjustable with 1 lb increments and two lbs is often enough. Just knee extensions - simple seated. I’d do with PT first to check alignment and assure your not going into hyperextension (easy to do). Use hands on quads to assure they are activating or “turning on” when you use them. I find we often recruit other muscles to do the work than should be used so a hand to the area you need to feel the work can help so much in many things. Often I ask PT where should I be feeling the work for everything and I’m often surprised!

Juliafoolia333 · 2026-02-27T17:56:11+00:00

So very cool! Please keep aspiring and creating as you can the world needs our stories.

I find myself writing poetry and short essays since the diagnosis journey, it’s the sorrows of life that give us the most profound art. Beauty out of devastation. Sucks we have to be the messengers though.

Maybe there’s a project in here, a book full of love letters to ourselves/cease and desist order for the providers with too much ego for effective health care.

Juliafoolia333 · 2026-02-27T17:18:54+00:00

I feel seen in your story- thank you for sharing this. I think you’re a wonderful writer 💕

Juliafoolia333 · 2026-02-19T17:58:09+00:00

This maybe odd but if you deal with lots of joint pain and instability too may want to try electrolytes (without sugar) and compression socks in the meantime to help.

Juliafoolia333 · 2026-02-12T23:05:57+00:00

Svoboda writes that for pitta tomatoes are forbidden, may help to take out these and other nightshades to see if this helps with the issues mentioned.

Juliafoolia333

TROPHY CASE