IamA 21 year old woman living with Ehlers-Danlos Syndrome & autism AMA!

A lot of resources say that autism presents a little differently in women. I just got an autism diagnosis at 23 and my therapist often mentions how it's overlooked more often in women. How young were you diagnosed, and did you have a harder time getting a diagnosis than others? Who and what first brought it to you or your family's attention? I noticed you said that you can't stand water on your face, I'd imagine that would be pretty noticeable in childhood.

How do you do with social stuff - I see you have anxiety (me too), do you have certain categories of social behavior that you do better in than others (like better or worse at 'script speaking', like is taught at service jobs ['how may I help you', etc], better or worse at knowing how to comfort people, and so on)?

(I'm interested in answers from anyone to the social category questions btw)

i was diagnosed at 14, I don't really know who brought it up, all I know is i was diagnosed through a place called CAMHs here in the uk, thanks to my school passing me through to them I was diagnosed with dyspraxia too. Things have always been noticable however, my family always just thought it was me in general.

Social stuff is kind of a hit and miss, I got so bad with it that I was having anxiety attacks multiple times a week during in college.

Diagnosed autistic at 13 through cahms, they try their best but aren't great. I can feel ya on the anxiety and depression, I've just got to uni but luckily the support team.has been fantastic. I hope you get through it and wish you all the best.

Thank you <3

What was it that caused you to be diagnosed with autism?

Honestly I don’t have a clue what prompted them to think I had autism to start with - I was diagnosed at 14.

I love billiards, but often prefer playing nine-ball instead of the traditional eight-ball matches. Do you have a regular pool partner to shoot with, or do you enjoy playing against strangers?

I am often too nervous to play against strangers, however the captain of the pool team at the bar I often play at said I am the first person in a wheelchair he has played against & would happily have me on the team - I declined the offer as due to my illness I don’t have the ability to make such commitments when it comes to tournaments etc - it try my hardest to make sure my birds are properly cared for & I often put them before myself - going out to tournaments would just be too demanding for me I think.

I have a couple of friends I play with once a week or so.

Your birds are lucky to have you! Love those pics of you rocking the pool table, would consider myself lucky to shoot with ya. Cheers!

Haha, thank you so much! :)

Is there a connection between Ehlers-Danlos and Autism that you know of? I noticed another ama yesterday with someone who had both and another commenter. Or is it just a coincidence?

I have heard things about autism being related to hyper mobility - but it’s not something I have looked into too deeply. I mean most of the population has some degree of autism so... I’m just gonna say it’s coincidence

Funny my girlfriend has hyper mobility and is physically disabled but is the nicest and most polite person ive ever met, really makes me wonder with regards to the autism correlation because she is quite socially awkward and quite fanatical about her hobbies

Wouldn't make a difference as i love her to bits!

I'm physically disabled because of my joints, it's a pain in the ass, and not everyone who's socially awkward is automatically autistic, as long as she's a nice person, and is able to function somewhat normally, it shouldn't honestly warrant a diagnosis, as far as i am aware autism is just another label -

Oh i definetely agree, i work with autistic adults and the range of ability differs too much for me to take 'autism' as a meaningful diagnosis.

She is on disability due to her joints aswell, more specifically just her hips and then full paralysis below her left ankle. No causation just happened when she was 16, human body is really fucky.

I’d urge her to be referred to a rheumatologist if she’s in the UK, or a geneticist if she’s in the USA & ask about ehlers Danlos syndrome, and not to be afraid to ask for a second opinion if need be.

Do you feel like you've got a good grasp of your illness? My wife has EDS and a laundry list of illnesses associated with it. Her experiences with doctors has been a mixed bag, with doctors doing contradictory things all the time. I honestly can't keep up with it all.

I have EDS & everything wrong with me and my body is instantly blamed on EDS & i also am ending up with a laundry list of diagnosises, it’s annoying - but I am learning to deal with it. I kinda just accept it for what it is & try to ignore its existence where I can. :)

What do you hope to accomplish by doing an AMA? I’m curious, as an older adult with hEDS and comorbids, what the goal is for doing this type of thing?

Mostly to see if I can help people understand EDS a bit better & find other people like myself of similar age - with similar interests.

subtype of eds?classical,hypermobility,vascular??

Hypermobile

Do you do physical therapy?

Yes! I’ve been through about 3 PTs who have all advised I don’t do PT to any extremity; because it’s caused me more harm than good. It’s a pain in the ass, but I try to exercise as best I can. I am essentially damned if I do, damned if I Dont.

Hi! Have you ever had or do you routinely have echocardiograms done? I'm in a cardiac sonography program at school and we discuss a lot about marfans, ehlers dangles syndrome, and other connective tissue disorders since they often impact the heart and the vessels.

I've had a echocardiograph done and ECG's done, - I'm not sure when my next one is due, but i was told my mitral valve leaflet is flopping around and not doing its job properly, but is not regurgitating enough blood to warrant an operation.

What type? An ex has cat4, vascular. It was pretty brutal.

Oddly enough we met playing pool though.

She had her doctor sneaking in some drug from like Romania to help with her symptoms.

Hypermobility type. I've not had any doctors sneaking me drugs into the country though, haha.

Have you ever wanted to smoke, drink or do drugs?

I’ve smoked and drunk in the past - I have tried smoking weed & I avoid pain killers (prescription) because I don’t like the “high” feeling it gives me, I don’t like the feeling of being drunk either, not only that the alcohol & drugs mess with my stomach, it’s just not worth it. I also find tobacco kind of gross - the taste makes me feel sick. I don’t mind people smoking around me so much, it’s just not something I choose to do personally :)

Cool, why did you mention it in your intro?

Because, it's honestly something I am proud of - i mentioned I go to the local bars etc, so I was more worried about people assuming "well, she goes to the local bar - she must drink" and of course bird lovers like myself being like "omg, she owns birds, I hope she doesn't smoke around them" - It's more of a social anxiety thing I guess :)

Out of curiosity, a friend of mine also has Hypermobile EDS and takes cannabis since it helps control the pain better than prescription painkillers (which also came with terrible side-effects). So basically my question is have you thought of taking CBD to control the symptoms of EDS?

I avoid most drugs like the plague & I have no intention on “fixing” what isn’t already broken - as it currently stands I am managing my illness fine without pain meds - and that’s okay with me.

If you don't do drugs, why do I see you taking a big fat bong rip in your instagram?

Oh wait that is an inhaler :(

That is gas & air - and that was while I had a paramedic relocating my hip on my bed 😂

how easy is it to own a pet bird btw? im keen to own one when i get older but dont know anything about em

It’s easy, but it’s time consuming & like having a permanent crack addicted toddler, that wants to destroy anything and everything in the house...

My go-to's:
Wagon wheel, Breakaway, Fortunate son, Happiness is a warm gun, Just a friend, Sorry skirt long jacket, My immortal

What do you sing, OP?

Edit: format

My immortal is one of my go to's for karaoke haha

amy winehouse - valerie evanescence - bring me to life 4 non blondes- whats up

3 of my biggest Go tos for karaoke haha

This may have been asked but have have you tried Kratom? I spent years on meds for anxiety and depression but alas none worked but did leave me with horrendous dependency on Lyrica. Kratom has been the best thing for me. It allows me to function.

I'm not a huge fan of medications, I avoid them for the most part, I am currently in the process of trying to get off citalopram.

How did your eds get diagnosed? Did you get your DNA tested to narrow which version of eds you have?

There's no genetic testing available to diagnose the type I have, as previously stated, I was passed around multiple specialists before being diagnosed.

Where ya from?

Good old England.

Does EDS affect your ability to have sex/your sex life?

This isn't a question i'd like to answer publicly, for personal reasons.

Have you ever thought of streaming on Twitch or anything like that? You look like you're a gamer based off your insta.

I am indeed a gamer, but I don’t stream. I have done a couple of streams but my internet is too crappy for that! Haha

Fellow 21 year old with EDS and Asperger's here! What type of EDS is yours and what symptoms do you experience? I'm lucky enough to not be in a wheelchair, but I have a couple heart defects, I'm already developing arthritis, and I'm incapable of physical labor or heavy lifting. On top of being mentally ill and autistic, things can get really depressing for me. Weed tends to help me through a lot of the chronic pain and anxiety, personally :~)

Type 3 ehlers-danlos (so hypermobility type) I mostly get dislocations in both hips and shoulders,a lot of joint pain, I also have a couple of problems with my internal organs - my oseophagus doesn't work properly, i get recurring kidney stones, my stomach doesn't seem to want to work properly (still waiting on more testing for that) and my mitral valve doesn't do it's job properly - the leaflet of the valve is flopping around and not doing it's job properly. other than that, I get the annoying scarring and skin that cuts easily. a few red raised up scratches from my bird have turned into full blown cuts on my chest and shoulders over night, bruises take forever to come out and forever to.

I suffer from anxiety, depression and autism, it's really not fun, but for the most part I find trying to keep myself busy is the best thing to do :)

Yikes man, that's a whole lot of suffering :( sounds like you've got it quite a bit worse than me. Thankfully I only have classical EDS and I'm not too severe, my problems are mostly my joints, my mitral valve has a prolapse (twinsies!), and I've got a dilated aorta. The worst factor for me is that my shoulders, wrists, hands and knees are already slowly, but steadily, getting worse and more painful. What's the most physical you can get? Are you able to do things like hike and ride a bike, or are you more often than not bound to your wheelchair?

Riding a bike is a no go - my fingers got so bad I had to quit guitar at age 17 - before I was even diagnosed with EDS. I couldn’t write properly with a pen & paper by 15 & was relying on a. Laptop. My hands, hips & shoulders are pretty badly effected to the point the most basic tasks are often impossible - something as simple as opening the fridge can make my shoulder come out, or standing up can make my hips pop out, sleeping often leads to dislocations - so I wake up multiple times a night to relocate my hips & shoulders -I can walk, I walk around the house as best I can - but things I used to love such as horse riding & ice skating I can’t do anymore because of how bad my hips have gotten. I’ve learned to replace those hobbies with new things; I adopted birds, took up PC gaming, & stopped playing in bands - started doing karaoke for fun etc (which by the way - is a great confidence boost - especially after I got more comfortable at the one particular bar I go to)

Jeez, that is really awful, I'm so sorry for everything you go through :( even as restricted as I am, I can't imagine dealing with dislocations on a daily basis and losing so much of your ability to simply function on your own. Its terrifying knowing I'll be there someday too. It's good that you at least have hobbies, PC gaming has been my go to for many years now. I have to say I admire your courage for going out to bars and doing karaoke, that's something I could never dream of doing with my social anxieties. More often than not, my autism and mental illness is the dominant force in my life rather than my EDS. Its inspiring to see that there are other people out there, my age, with my same spattering of disabilities, who have it even rougher, keeping a smile on their face and making the most of their lives. You're awesome, keep it up!

On another note, what sort of autism do you have and how does it impact your life? I'm fairly high functioning for aspergers, but I'm still a weirdo and I definitely have my moments where it takes over and I'm subject to my every impulse.

Have Aspergers, high functioning. I also have my moments - it effects me in so many strange ways.... I get panic attacks if I get water on my face which is my biggest quirk with my autism haha, I also say things that offend people and speak without thinking >_< but I have a dark sense of humour - and a lot of my friends do too. I have gotten better with my autism & mental health - about as fast as my body has deteriorated according to my family...

EDS is progressive / degenerative - but I don’t mind, some people live into their 50s without major complications, I just unfortunately got the shitty hand. I don’t mind though - it doesn’t change or define me as a person. I am still happy.

If you ever want to talk - feel free to hit me up. Also if you play PC I am totally down to talk on discord & play with you any time! It’s nice to see a fellow EDSer

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I can’t stand people using it to romanticise things- there is nothing sexy or romantic about chronic illness, physical or mental. It is unfortunately huge battle that most people can’t handle it’s hard on both the person with the illness & their partner.

• it’s wrong & messed up.

How did you find you had autism?

I was diagnosed at age 14. i don't really know how we found out.

Hey, I have Ehlers-Danlos too! I've never known anyone else with it. How hyper-mobile are you?

9/9 on the Beighton scale.

Have you ever attempted to try any medications similar to Neurontin/Gabapentin To reduce neuropathic pain and anxiety?

I ask because its one I take for my dislocated shoulder as a fellow EDS'er and its the only thing that gives me a good sleep at night, so I like to know others experiences.

I was on gabapentin for a while, but given the current prognosis (likely gastroparesis) I have opted out of taking all pain medications.

Not only that- Pain meds mess with my natural tolerance to pain. I don't want to be addicted to pain meds, or want to rely on them constantly. I do what i can - but with both hips & shoulder s dislocating multiple times a day, it's kind of difficult.

I've tried pain meds, but decided they're not for me, and that's okay.

Besides, when I stopped taking them or missed them - I was in more pain, and when I was taking them I was damaging myself and not realising it, at least off pain meds I can feel that initial "oh crap i shouldn't have done that" rather than carrying on doing what I'm doing and damaging myself in the process.

sorry if this hard to follow, the heat makes it hard to concentrate haah.

Oh no you are fine, I am surprised that gabapentin was increasing your gastroparesis severity since its not an opioid, I don't know if I have that was well, but I have to take laxatives+enema constantly myself regardless of what I eat or take.

I understand your desire to not want to seek them at all, I would be curious to your thoughts on Deep Brain Stimulation as a possibility if you ever were able to.

Thank you for answering so promptly and in detail, it must give doctors quite the eye raise when you meet the ones who aren't specialized.

It’s not confirmed that I have gastroparesis, but gabapentin certainly upset my IBS (diagnosed) - I honestly prefer going without pain meds, a lot of doctors are all like “huh?” When I say EDS. I even had one doctor googling it while I was in the room haha. I don’t think I’d mess with DBS to be honest :)

Gabapentin does not affect gastroparesis. I have hEDS with dysautonomia, SFN and GP. Gabapentin is fine to take.

How many times do I have to spell out I didn't stop taking it because of gastroparesis - I've also said = I am not officially diagnosed with gastroparesis.

It bothered my IBS, it also left me sleeping 17 hours a day. I was reacting badly to it in general, after 9 months I stopped taking all pain meds, and was actually okay.

I was replying to the other person. ETA: also, why so aggressive in the response? I was stating a fact about a med to clear it up. I’m a medical professional and just wanted to be sure the appropriate information was out there.

Sorry if I seemed aggressive - not my intention at all, apologies if it came across that way :)

Just a thought, have you seen a pain management specialist? Most of the people I know with EDS do and have had very good results with some non-traditional medications that don't prevent them from feeling "warning" pain. Gabapentin is literally the worst.

I’ve been under pain management - but I’ve established I am coping just fine without pain medication - therefore I am refusing to take any. I only take pain meds if I am in so much pain I can’t function without them.

Did you have to struggle to get diagnosed with EDS and do you have to explain to each new health professional what it actually is daily?

I didn’t struggle too much, I was passed from pillar to post & didnt know what EDS was until I was diagnosed

I didn't see anyone else ask, how pierced are you? Do you have any tattoos? I ask because I'm a creep.

I have had multiple piercings - I’ve taken them all out now though, - I took my lip piercings out this morning because ruby - my Galah Cockatoo keeps attacking them & I don’t fancy having my lip ripped open.

I only have 1 tattoo though.

Hi, hope you're having a good day today!

Have you ever been tested for POTS (postural orthostatic tachycardia syndrome)? EDS can be an underlying cause of it, and symptoms for both can overlap.

I have indeed, I do have anautonomic problem, but it's not POTS

my blood pressure drops and my heart doesn't do anything to correct it, in turn making my blood pressure continually drop until i faint.

Ugh, doesn’t sound like fun. So what is the treatment plan? Have they tried the walk backwards physical therapy? Or braces for the joints?

I refuse to use braces, because they cause more damage than good. I only use braces if I have an active injury to a joint. I have tried physical therapy. - but in my case it made me worse. It’s a case of I am damned if I do - damned if I don’t .

Oh hey wow, one of my best friends has aspergers and EDS! I'm just aspergers but... Her skin is so awesome, do you have the same side-effect?

Also, painkillers don't work on her... Got any advice for that?

I don’t take pain killers, I avoid them like the plague - I’d rather not mess up my internal organs further & would rather leave it to my body’s. Natural pain tolerance. Yes - my skin is stretchy & yes it cuts easily and is also extremely soft, which is really annoying at the best of times ahah

How popular is 8-ball over in England? Last time I was there snooker seemed to still be the game, though I played a couple games of nine ball. Also, do you have your own cue, or use the house? Preference?

Just random questions from random guy across the pond - have a great day! And btw, I'd rethink the league invite. Often just having an extra player gives a team more flexibility for matches - might be a lot less of a commitment than you think, but also a cool thing to do when you have the time :)

8ball is in almost every pub in the Uk. Haha. Snooker is a massive thing still though. I don’t have my own cue, I don’t play often enough to warrant one. Once my illness is better controlled I may consider joining the team : )

Have you ever tried athletic compression sleeves for your joints? I've had friends with hEDS that had positive experiences with them, of course the sensory issues from autism might rule them out.

I tend to avoid braces & sleeves etc in general unless I 100% need to. - I don’t want to over use them & don’t want to become overly dependent on them

Do you have a go-to coping mechanism (mental or physical) that you use in new or uncomfortable social situations?

I bite my nails and skin around them, unhealthy I know, i don't realise I'm doing it until i'm bleeding either, which is really annoying and awkward.

My brother in law has EDS. He has three girls, all under age 6. What are the chances that at least one of them will have EDS?

It's a 50/50 chance of passing it down to your kids.

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Jesus Christ, dude.

What was that?

I also have EDS but a much more mild form. Always find it really amazing seeing people with more extreme symptoms dealing with it.

I was just wondering if you've ever been tested for ADHD? I ask because last week I spoke to one of the UK's leading experts on ADHD and he was just about to publish a paper displaying a huge correlation between hypermobility disorders like EDS and ADHD, which, as a sufferer of both, I found super interesting.

I do not have any forms of ADHD, I am actually one of the more chilled out people. :)

As a patient of 21st century with instant information at your fingertip, do you think it is helpful to know every little details about your conditions? Would you like to know or would you rather leave it to the doctor?

I honestly don’t really care all that much about searching it up - because it causes more anxiety & isn’t worth it. I’ve looked as far as a definition & that’s all i need. I leave most of it to doctors because of the anxiety it causes me.

Me too! I'm 22 with EDS and autism! I was actually reading a paper recently and autism is 7.7 times more likely in people with EDS! Crazy right? My guess that that the sensory processing issues also include vestibular and other neurons causing dysautonomia, but that's just a guess. Hit me up if you wanna chat!

Thank you! && yes! It’s crazy - I didn’t realise how many people with EDS have autism, i never looked into the studies.

I know my SPD is more sound sensitive - dealing with loud high pitch sounds physically hurts my ears & people don’t seem to realise that, I literally keel over in agony If someone lights a plasma lighter in the next room. No thank you ahaha.

How many piercings and where?

I’ve had multiple - I’ve taken them out now because my bird kept attacking my lip bars haha

My wife has EDS type 3 - what is the one bit of advice you would give to a partner of someone with EDS so that they can make your life better / more enjoyable?

Honestly, just be understanding and patient; don't go mad when our illness suddenly takes a bad turn and we suddenly have to cancel plans, or just don't want to make plans at all - because in my case - i don;t know how i'm gonna feel in 5 mins, let alone 5 hours/days/weeks/month/years etc.

Hi, I also have autism, depression, and Ehlers Danlos (Type 2, classical mitis). Do you have more joint problems on one side? My right side is "pretty much destroyed", as one medic described it. I've dislocated my right knee, hip, and shoulder, but my left side holds together well.

Both hips & both shoulders are bad, but it’s my right hip & left shoulder that are the worst 2 for dislocations

Hello! I hope you still answer questions :)

You mentioned you got diagnosed at around year 14, we're about the same age. I was just wondering about some culture difference in this.

Where I went to school I never heard about autism. I learned about the autism spectrum just a few years ago (I was about 16-17).

To my questions: * Was autism 'stigmatized' in the sense of it wasn't talked about? * Did you share the diagnosis with any friends, how did they react? Did they know about autism from before?

Thanks for doing this AMA! :)

A lot of people didn't know i was autistic until I finally started to open up about it when i was about 17. It was very difficult for me to talk about it, but as time went on, it became something I was no longer ashamed to admit, because in school - yes it was stigmatized and a lot of people were bullied for having mental problems.

Fellow EDser not to be a creeper but I read on hear you have a kid?? If so how did it go?? I'm concerned with bleeding issues/more joint issues

haha! i don't have kids, I have 3 birds, I don't want to have kids, it'd be morally wrong in my opinion - at risk of giving a child EDS - no thanks, I wouldn't want to be responsible for another human suffering this illness and therefore would personally rather not take that risk. plus, i didn't want kids in the first place, so i now have more of an excuse not to haha.

How far will England go in the World Cup?

It’s not coming home, the Internet is lying.

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Neither of my parents have EDS, but both of my sisters have had symtpoms, my eldest sister unfortunately passed away (suicide) - and she had "clicky hips" as she called them, and was diagnosed with dyspraxia. My other sister is extremely hypermobile in general.

I was 19 when I was diagnosed, but was diagnosed with dyspraxia at age 14.

what type of autism do you suffer from?

Asperger's

Do you study? what do you plan to do?

Went to college to do computers - ended up dropping out due to severe anxiety attacks & my illness physically deteriorating rapidly over the course of the year. I was fainting multiple times a week, wasn’t easing properly & was sleeping a lot & falling asleep in classes.

What do you plan to do or what do you love doing?

I don’t really know what I plan to do, right now I’ve got 3 wonderful birds I work on training daily, I am very happy with pouring my time & effort into them & look after them better than myself.

Do people avoid hanging out with you because you're a bit of a downer?

not that i'm aware of - I have a lot of friends who love to be around me, they say I am probably one of the happiest people they know. Granted, there's been times things have gotten rough, and I've been dragged down, but I try my best to stay strong for my friends & family :)

How much money does the government give you every month?

A bit rude and offensive.