2023 Connecting The Dots between Autism, ADHD, Dyspraxia and EDS and HSD - Jane Gre...
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- Опубликовано: 21 мар 2024
- Jane Green MBE for services to neurodivergent people and those with related joint hypermobility conditions including Ehlers-Danlos syndromes- NYE Kings' Honours List Jane is a professional educationalist and led this nationally until she medically retired. She now champions hypermobile EDS, JHS, HSD, and neurodivergence.
Jane joined us at our 2023 Global Learning Conference speaking on 'Connecting the dots between autism, ADHD, dyspraxia & EDS & HSD.
This presentation covers key areas of neurodivergence, such as Autism, ADHD, Dyspraxia, and EDS and HSD. Why has it not been connected before? What are the key strengths of being neurodivergent? What are the challenges? And what does this connection with symptomatic hypermobility mean? And tips to take away for you, for others, family members, friends, allied professionals
happy neurodiversity celebration week everyone !
Thanks for sharing your personal story! You don’t lose your professional appearance by getting personal :) 👍🏼
Gosh. I need to gear myself up to be able to watch/confront all of this. I got diagnosed so late (40) after years of gaslighting + managed a masters degree despite ADHD and Dyscalculia. (Both only diagnosed a couple of years ago only).
My brother is dyspraxic + clearly on the spectrum yet high functioning - yet he never was diagnosed either for EDS nor for Asperger but both are blatantly obvious to me. So it’s still difficult for me to absorb the information without crying from some form of PTSD from being told i was a hypochondriac and/or it was all in my head. I got gaslit by teachers for not trying hard enough in maths and being slow or not listening.
Stay strong, everyone. I’m very grateful for the resilience and determination that our EDS specialist show to bring us research results and better diagnostic tools for our GPs
Big gentle hug to all of you beautiful Zebras out there. ❤
I ❤ this video. I'm a 50 year old man. I was recently diagnosed with ADHD combined, but I've always had the symptoms of Dyspraxia, Autism Avoidant Personality Disorder & Auditory Processing Disorder too Happy Autism Awareness Month!
The photograph of a prosthetically supported knee made me smile. If only I had known sooner that pain through physical activity wasn't par for the course. Just when I decided to revisit my youthful love of physical movement - my joints started screaming about everything. I've been using an old tennis elbow neoprene support on my knee but the other knee is getting jealous, now. Ordered some new, highly rated, patella support straps (a matching pair). I hope they work, though, as it's actually a ligament issue I have. And the next time my hip dislocates - I'm not going to put up with having to walk to the GP for the perfunctory inspection and inevitable codeine prescription. I never realised that the 'tricks' that would either impress or horrify others were more than just double jointedness. If I'd have known - I might have been kinder to all the joints that could do, apparently, unusual things.
Back in the seventies I was told I'd never be able to have children (manifestly wrong) and that I'd be intellectually sluggish (probably not quite right) but I now think (both parents have died) that 'can't have children' was a gentle way of saying 'don't have children' and the other one was inserted to limit my self expectations (this might have been an attempt at reverse psychology but then why did they have to tell my primary school teachers, too, as they ended up (I feel) thinking I was a bit of a fraud?). Nobody mentioned anything particular, about the joints, except the standard 'If you keep doing that you'll pay for it in later life.' I'd like to think that if my parents had known about autism, and the doctors had known about autism, somebody would have told me. I wish I'd been told. And I wish I'd been better protected from the inevitable elevated and repetitive relational abuse because that, for the females in particular, is a killer. I hope the newly diagnosed autistic young females are given priority guidance into how to hold themselves to a higher value and avoid all the horrible situations that wait for them.
To the mothers of autistic girls - you have to be lionesses and it will probably be a lifetime role as your daughters are going to draw monsters out of the shadows at an astonishing rate. They think they are doing what they need to do to survive - you need to teach them they are worth so much more. Watch out for them, in particular, hitching their wagons to sociopaths as they will be driven to gift their fragility to a sociopath to take care of. Indeed, the apparent lack of compassion of a sociopath is what the autistic female thinks is safe as the manipulative emotional neediness of the outwardly sensitive is repellent to her. She's on the lookout for somebody that doesn't care about her as much as she cares about them. And that's trouble brewing.
They probably didn’t put that much thought into labelling you, they probably just thought they were giving you the best advice.
Wow, what you described sounds so much like me through out my life. I’m 48, I was diagnosed with Dyspraxia at 41 while studying and ADHD at 45. I’ve had problems with pain in my legs since early teen years where the centre of the muscle nots up and they feel like they are on fire. Thank you for this.
Thank YOU so much! You're raising your voice for people like me who haven't been heard all our lives.
REALLY needed these dots joined- thank you! VERY much appreciate the visual at 8:35 with the overlapping brain areas and conditions as well!
Been hypermobile/had migraines my entire life, difficult to get diagnosed hEDS officially in my country STILL for some reason... so diagnosed HSD first, then approx 4 years later after 2 more auto immune conditions + POTS/dysautonomia Dx, ADHD is first and then autism in the past few mths - almost a year after ADHD. 35+ yo F so your story is extremely relatable and needed!
This woman is amazing
I feel that this video should be sent to all doctors. I see so much of myself in your descriptions. I'm scared to go to a doctor because of the humiliation of not being believed. I feel like someone has put a secret coding in my medical file for hypochondriac, because after seeking other medical opinions (changing GP's) as soon as I get my file sent over they start speaking to me as though I'm feeble and downplaying my genuine concerns about my health. The best they can come up with is "Chronic Pain" annd take osteopanadol 3 times a day. No wonder we die early. My mother died age 51 but I have outlived her by 11 years now. I'm not even going to try and get a diagnosis but everything you say resonated strongly. Thank you for this video, I might show it to my daughter when I'm feeling brave.
I see you and I understand.
My story is similar left scholl with no qualifications .I really struggled with pain migraine and severe mental health issues .I was finally diagnosed at 52 .I managed to get two degrees .It so sad we have struggle through our lives.
You are an amazing human being. And excellent, much-needed discussion.
Please also look at the acute porphyria's connection to this, so many people with porphyria have EDS and Mast cell disorders, autism/ Asperger's, but no one is studying the connection.
EDS is not rare, it is rarely diagnosed
Thank you for this. I wonder if visualising yourself into a new position, like a new job, career, or anything new, is also a problem for people with autism? Hence, the anxiety associated with this. Shadowing people in various careers, creating a buddy system, etc. might be a solution?
Opening up opportunities to do this is the challenge.
Higher functioning autistic people face greater challenges sometimes because their autism is invisible , except to those who know them.
I find that frequent encouraging words work wonders for high functioning autistic people because they then know where they stand. They don't often get words of encouragement and invitations to join in.
Employers, teachers, and fellow students could learn this.
I have to watch this again and take notes along with googling a bunch of words and phrases I have neve heard , but perfectly describe me ! WOW !
Thank you VERY much for this, you've come a long way and make a very good contribution. Your MBE is well-earned.
Personally, I think that in terms of "treatments", unifying the underlying mechanisms is very good, but also...
The need to sweep everything into one category, Autism, and treat the entire group as something to be diagnosed and viewed as a disability, is something very NeuroTypical and Binary-fixated.
The slogan "Diversity is our strength" is true - NOT for the melanin variations, but for our human Neuro-Diversity. We need the diverse skills, need to work together to cover the diverse deficiencies. Together we can solve problems.
Wonderful detailed whirlwind tour. Will look further at the website. I don’t have EDS but am autistic with adhd and have had pain with joint and muscle stiffness all my adult life due to the stress of the unknown adhd and autism for 40 years.
I’m interested to know more about the work regarding bipolar and neurodiversity. I’m bipolar and I see it as late onset neurodiversity. That’s one way I frame it. I acquired many new cool traits that I’ve worked towards harnessing (having access to them not just in mania and energetic states-like creativity) while other traits atrophied. There seems to be a trade off, like certain brain circuits became active. I sense it has to do with accessing more of the right brain. I’ve lost a lot of memory capacity but I use my phone for that. Im hypersensitive to noise etc.
Bipolar is interesting, i don't know much about it
There is a study or two about a loop of 60+ genes involving autism, ADHD, schizophrenia and bipolar. They appear to be related.
I didn’t know that was ADHD. I was misdiagnosed with Bipolar for over 10 years from 21 to around 33-34. I was diagnosed with ADHD at 42. I was given various medications for bipolar that likely wrecked my health. My mother was also misdiagnosed with Bipolar and we believe she’s also ADHD but she’s over 70 so doesn’t really care at this point. She’s very active and an extrovert so that tends to make up for things. As long as she’s busy she’s fine. I’m an introvert and struggle with motivation and organization unless of course I’m doing something that I’m passionate about or intensely interested in. I hope you find your way. ♥️
Keto Diet and Lithium OROTATE can be very helpful for Bi-Polar and Carnivore Diet even more so! Namaste 🙏
omg i can clearly see where i fall in this spectrum...and here we thought it was all complex ptsd... just add decades oi abuse and neglect... oh man....
Oh my goodness, your new channel sounds amazing! I will definitely be joining you there. By the way I love, love, love the picture you have of the tree/roots you have on your wall ❤
Thank you for sharing this, very interesting video! Are the slides available somewhere? I couldn't read all of the text as youtube had compressed the image quite strongly.
If you enlarge the screen in YT...so it is full screen....you can see the slides. At least I can see them on a tablet. Unfortunately YT vids doesnt allow magnification. IF EDS Society could post the speaker's slides as a PDF...in the vid description, we could view them. They dont need to make the file downloadable...as long as it's viewable. Some speakers dont want their slides copied...so sometimes they wont allow them to be posted. I would imagine if you google her name, maybe a website and then also some info about the slides. If not, if EDS society could put links to the papers or websites in her slides that others cant see.
@@maryr7593on a tablet you can zoom in with a pinch gesture, but it didn't really help, as the content was quite block. I tried also googling the slides (I'm usually pretty good at finding stuff like this), but didn't find them unfortunately.
Though i will add...her font size was quite small on some slides...as well as dark backgrounds and dark font color probably hasnt made it easy. Also if you wear reading glasses....you might need to put them on for the small font. I wear, but wasnt wearing them...since distance away from face was farther than normal reading distance...however if you want to read the fine print from her non-medical illustration...then probably reading glasses and put device up close...in full screen mode.
@@maryr7593 not sure if youtube removed my earlier comment. But I was able to zoom in on my tablet (just the usual pinch gesture), however, the text was so pixellated that it didn't help much. I also tried to search for the slides online (I am usually quite a detective in finding stuff like that), but didn't find anything except one slide.
@@fintux I have had that too with the pixelated text. I saw in her beginning slide, she had a website that i missed early on. She also had email. Since she's not a dr but more of an educator, perhaps sending an email. If that part was pixelated for you, let me know and I can see if I can get it. Once I leave comment section...to go look for it...the comment gets lost in cyberspace.
Thank you for a very interesting video.
I do remember hearing some years ago that hypermobility is associated with depression. The association with various neuro-divergent traits is interesting.
To me it says that neurodivergence is not just "in the brain". I think some of the prejudice against autism is that it is seen as a condition that is "just in people's heads".
While I freely acknowledge that many neuro-divergent adults would not want a cure, (it could easily seem like having your personality stripped away and who knows what you'd end up with to replace it), I wonder if this is a condition that might be amenable to treatment.
Very good thank you. Please put references here, I cant read it.
This is a really marvellous clip, and I think Jane Green is superb. I hope to hear more of her lectures and thoughts Thank you very much for uploading this, and I have found this incredibly informative and resonating deeply with my current journey.
little by little, we'll find our ways to new connections. Life is complex and all times have different spaces open for different types of exploration.
This is a fantastic presentation.. would it be possible to have access to the slides at all??
Why is FASD also not a part of this conversation about neurodivergent differential diagnosis??
I've been diagnosed c-ptsd 3 times. 😅
omg
it is so much like me
i have started fasting since 2016 because it is the only time i feel ok
i think i have dyslexia, adhd, autism, ocd, odd and i am sure i give different meanings to words…. i feel like an alien… it is exhausting to cope with life.
I truly appreciate your work and this information. However, I do have to comment that the graphics shown appear very blurry on the video:/
Great graphics! We are all vulnerable to long covid/fibromyalgia/mecfs, so look after yourselves people
Thank you very much. Very thoughtful.
Wow, I can relate to so much of your story. Thank you for sharing. 🤍
❤
Yes🎉🎉🎉😮
Is it possible to get the slide deck please?
You can find them on our website, here: www.ehlers-danlos.com/resource/glc2023-closing-keynote-connecting-the-dots-between-autism-adhd-dyspraxia-and-eds-and-hsd-jane-green-mbe/
haha, I'm surprised that through this playlist I havent heard Autism mentioned as a comorbidity! Explains the experience of not being taken seriously, but also the lgbt rate 😅
MCAS
Please forgove me I’m trying to learn about myself
Is this sweet woman saying Dysrexia? Or Dyslexia I keep hearing the first of the two and I’m confused
Maybe it’s her pronunciation or I’m not understanding this work every time she says it. I’ve even slowed to some the speed of the video to try to catch it each time. I’m still hearing Dysrexia.
Thank you.
Dyspraxia perhaps?
As an affected person, I had high expectations starting this video, but as much as the life story was interesting, errrr, where was the actual "connecting the dots" bit? I mean, where was the information, the new stuff, the discoveries, the conclusions, the things that could help?
I read the transcript of seems like a lot of generalised rambling but the general gist I get from it is that certain conditions can tend together. I like to joke that Tahoe of us who are neurodivergent are like drs we keep collecting different conditions with all the letters of the alphabet because they coexist or are what is called happen to be comorbid
I feel the same way. I’m wondering if the title should have actually been “it’s time for the medical profession to connect the dots” because I think that is what she was referring to whereas I thought she was going to explain how the dots were (already) connected.
I think there is also a connection with some spiral bacteria like borrelia for example, because I have a friend which kid is autistic and I remember that during her pregnancy she had circular rashes on her face
I get the circular rashes when stressed, wrists/ neck/ chest.
Been told eczema, scabies, contact allergy etc.
Most likely MCAS. Doing my own attempts at a low histamine diet and going for simple personal hygiene products/ cleaners/ detergents has greatly reduced frequency of these weird lesions. Very occasional, perhaps 8 small lesions per year.
Compared with multiple lesions at any one time, for 15yrs+ and feeling accomplished to only have one lesion at any one time.
Additionally also been told shingles. Continuous shingles.
However, never been able to get clear diagnosis or meet any strict diagnostic criteria.
@@Skittenmeow In my case I also have ring shapped rashes. I usually get them when having NSAIDs which I thought where due an allergy but my allergist says that's due to a bacteria and that she will also get that checked. Recently I also got tested for 3 of the most common borrelia strains in Spain and tested negative but I do have high T8 memory linfocits against borrelia; which to my understanding it either means I had it in the past and not now or that my T8 linfocits react to a bacteria with a similar strucure as borrelia. I'm also noticing another type of eczema I have on my chest appears when I eat pork so I'm suspecting pork allergy or alpha gal allergy which appears with certain tick bites.
And the prize for 'jumping to conclusions' goes to @street_girl .I mean I farted once and at that exact moment a bird fly by. Do you now think there is a connection between those to things? No, because it happens far more often that birds don't fly by when I fart.
@@birdgincrit yes, i do think there is a connection. And you can fart all you want since you don't have a better idea. You can also go to the official lyme pages were they also think the same. If you want I can send you links to open your close minded head. If you have a child with autism why don't you make him or his mother get a test in a lab in germany for lyme? Scared?
Seated
Whats the point of having a name, a label to explain the way you feel? What good can that possibly bring besides using that label in the hope others will change the way they see/treat you? It looks like a victimhood complex that will last the rest of your life. All these videos are the same and honestly feel like a waste of time.
I've not watched much of this channel yet, but
Naming things is in general the way humans figure out how to deal with something. It's a requisite first step, because most of our cognition relies on language once we get out of toddlerhood. Like, imagine a world where we didn't have any word to describe a building that was on fire. How could you tell people to get out, short of taking them to the fire and showing them in the dumbest way? How would you get help from the 911 dispatcher? How would you get the right help, so they send a fire department instead of police? The word fire serves as a point of shared meaning, where when I say it, I can trust that you know what I mean and what I am asking for.
Words for these kinds of things are the same way. It's why people spend so much time and energy not just on naming things, but on contending for specific definitions, because having a word that has a meaning that matches something you're trying to describe is incredibly important if you think you need any help with that thing at all, such as medical interventions, educational aid, social understanding, etc.
Wrong name (label) = wrong treatment. Trust me. I have had the wrong label and was given the wrong medicine. It was not good.
Having a named diagnoses is an improvement on being gaslit and told nothing is wrong.
Over the course of life I’ve heard of these regular things of autism, ADHD. Even experienced individuals suffering with these. I was surprised when you related that numbers are a problem for you. I’ve always disliked maths exactly for the same reason, dyslexia.
I blame the drugs that are forced on us babies to prevent childhood diseases?
There is a book, 'Turtles all the way Down'
One thing I think would be great progress is getting rid of ideas like neurodivergency or neurotypicality. It's an oxymoron in a world full of different ways of doing things. Makes more sense to me to merely think of different traits as adaptive and maladaptive relative to different situations. In all my time hearing these words, I still haven't encountered what I thought was a good case of someone being able to explain how someone DOESN'T have a brain which "processes differently from the typical majority" because we're all individuals. Wouldn't that essentially be an NPC just going along with whatever is deemed popular? Even then you'll be able to find ways that they are different than other people.
FYI I noticed about a year ago that people with schizoid personality disorder are vastly over-represented among people with EDS. That seemed really odd to me, and was one of the main reasons I clicked on this video.
I heard that schizoid personality disorder and autism overlap quite a bit but I don't know if that is true.
@@Catlily5There are similar traits which people relate to autism more, like very narrow, focused interests. On the surface they can look pretty similar. I have SzPD and have a brother who was diagnosed with Asperger's as a kid, so there's probably similar genetics involved. With that said, I didn't have symptoms related to either until well into my teens.