Almost all autistic people also have other mental health or psychological conditions but it's really hard to tell whether these are related to autism or occur for other reasons. It's hardly surprising if many autists develop anxiety and / or depression given the difficulties they face. What is certain is that autism makes treating any other issue much more difficult. Unfortunately many doctors or therapists ignore the autism and just use exactly the same techniques they would use on non-autistic people with those conditions - it can be like putting a sticking plaster on a deep wound and then wondering why the person is still bleeding.
listening to this video is. it means a lot. I'm autistic and have been feeling these kinds of pain all my life. I've seen dozens of doctors since i was a child, put on holters, did visits for heart conditions, neurological ones, and the response is always the same "there's nothing wrong with you, it's all in your head, it's just anxiety", i even had a doctor tell me, "why don't you drink a glass of wine after dinner every night? it'll help you relax". it's so frustrating because it feels like you're just making these things up in your head when no, i have constant pain in my joints (especially my hands and wrists and ankles, as you do, dana), and i feel like my heart is so heavy in my chest, and if i give too much attention to my breathing it just becomes so loud to the point of being unbearable. knowing that other people feel this way... it just makes you feel less alone. like it's not just in your head. so thank you, really. we might somatize a lot because of the anxiety, but it doesn't mean our pain isn't real
Dyspraxia is one of the only diagnosis Ive managed to get and its only because it was the only thing they caught back in primary school, the testing for it was just stuff like balancing and catching a ball and batting a ball. So basicly if you clumsy, can't catch things etc you likly are, and I do get wanting an official diagnosis for it but considering theirs no treatment for dyspraxia, no real accommodations etc it's not really worth getting it officially diagnosed. Main thing is to gain understanding of yourself and if it fits in the frame of you, then use it self diagnosed, and if something in the future explains things better you can replace it.
Omg no thank you SO much, im still not used to such a short style and how it makes my face look, so even though I like it, I keep getting all self conscious about it. Superficial comments about my hair are very welcome 😂💞💞💞
I was born with a rare brain condition that caused many diagnoses. Complete blindness, autism no sense of smell, problems regulating my body temperature. And on top of that, I have complex PTSD.
I find that we sometimes have to ask for what we want directly. Ask to be referred to a rheumatologist. If they refuse, find another doctor and try again, until you get that referral. You need and deserve an explanation for it at the very least, so you can then decide what to do about it. Keep on at it until you get it. Good luck. PS I spend my life ignoring my physical pain but that doesn't mean it isn't impacting me badly. It often is. As I've gotten older, its effects have worsened in ways I couldn't forsee. Putting on my 'happy face' to disguise my pain and make things easier for others has the consequence that I now also can't get the help I need when I need it - everyone just thinks I'm fine regardless, when I'm really not! Try not to undermine yourself when speaking with the doctor, especially if you mask to cover up the pain.
I was diagnosed with Irlen Syndrome at 11 years old where I wear blue tinted lenses and autistic at 46 years old and they are for life. Thankyou for todays video Dana.
A couple years back, my therapist was trying to help me work through my "social anxiety" and made me realize I don't have it. I do have bipolar, though.
I've heard one other autistic person say that her joint issues were related to being autistic. For a little statistical context I should add that I've listened to only a few people talking about what it's like for them to be autistic.
See I thought I had dyspraxia too, so I explained it to my doctor who then referred me to an allergen specialist. Turns out I have a wheat allergy that can cause you to walk into things like knocking yourself out from miss calculating the door frame, or tripping over my feet in public. So maybe that could be something to think about.
I just watched another autistic poster complaining about the criteria for autism still used in the medical community, and all the things it misses. I totally agree. It seems to me that the medical community is actually pretty bone-headed about the whole thing, and doesn't seem to be learning anything from what autistic people online are saying. For instance, the medical community doesn't ever seem to address the combination of ADHD and autism, despite the fact that about 50% of autistic people seem to have both conditions. I personally have no confidence that the medical community understands either condition, even in its broadest outlines, outside of lists of symptoms.
I unfortunately agree with you, which is why I, as someone who belongs in both the autistic and the medical community, am really advocating what autistic people online are saying and incorporating that into my own autism research and all my discussions with colleagues - even when it puts my name in the business at risk, because it simply needs to change. And I am very well suited to take that mission upon myself and bridge the gap between research, clinicians and the autistic community.
Dana, have you been tested for arthritis? Whether it’s from EDS related wear and tear (osteoarthritis) or autoimmunity (rheumatoid arthritis), it can be helpful to know which. Also, lots of people with EDS have MCAS, which can cause bone pain and digestive issues (like random vomiting). If you try taking a daily nonprescription antihistamine and it relieves any of your symptoms, that’s a huge clue to figuring out if you’re on the right track, without having to do a lot of scary googling and dr assessments. Getting MCAS treatment cured my partner’s life long IBS, most of the vomiting, some bone pain, etc. my partner has clearly had allergy-type issues their whole life, but only collected enough MCAS symptoms for us to figure it out as of a couple years ago. Would have been nice to know years ago.
Also, psychosis can come and go depending on chronic illness severity/physical stress and inflammation. MCAS can be worse during times of stress. Maybe your experiences with psychosis don’t fit a mental health diagnosis because they have a more physical origin. I wonder if you had worse joint pain or physical health around the times your psychosis has been more severe. Ren is a UK musician that experienced psychosis because he had untreated lyme’s disease. It can absolutely have physical origins.
The more I think about the autistic psychosis video, the more I think you are on to something. Maybe something we are not talking about enough. Because you're right, it doesn't fit with OCD (speaking for myself)... At least not the part where you have to repeat some actions, exp. turn the switch x amount of times to make the bad thoughts go away... But there are definitely intrusive thoughts and sometimes quite extreme, and there's definitely this feeling that things need to be in a particular way otherwise panic sets in. The example I see often on my feed which I relate to is, cleaning a surface with some kind of disinfectant and feeling like you have contaminated something, like your water cup which is across the room or the plates that are shut in the cupboard above. I don't know, sometimes I think it's OCD without the compulsions? Maybe in some people autism causes OCD like symptoms and sometimes it turns into full blown diagnosable OCD. You're definitely right in that we don't pay enough attention to lower support needs autistics and we're losing out on a lot of information because of that. Information that could help people with higher support needs too.
Not at all! It’s the weird internet context of every comment about it obviously came from a place of care and empathy and I appreciated it, but seeing it so many times starts to feel a certain way, but that’s just how it is to get engagement online, and I’m very happy people choose to engage at all!
Have you tried doing a low carb diet? Im asking because I noticed I get joint pains when I eat bread. I think its due to inflammation caused by a certain diet.
It may be a gluten allergy, since gluten is a major component of bread. If you are allergic to gluten it causes inflammation, chiefly of the intestines, but also of everything else too. It also causes a lot of anxiety. I developed celiac disease in my late thirties, which came along with major panic attacks. I was later diagnosed with a milk allergy as well as a gluten allergy. When I went off of milk products, the panic attacks stopped, and that was over 20 years ago!
Because disorder has a very negative context to it and illness has the implication of a cure, condition puts across that it’s something that can be diagnosed and is likely long term.
@@DanaAndersen Right, fair enouhh statement. My only trouble with that is if we treat most mental disorders, let alone neurological ones as conditions, it removes the incentive to research into a cure/reversal treatments which a very valid portion of the population is desperately hoping for. I don't want my ADHD for example to become a chronic life sentence for my children, if they dont want it. This is what I struggle to accept from the ND community - seemingly speaking over everyone that autism/adhd specifically (funny enough Schizophrenia and things like Epilepsy dont get the same positivism treatment) is harmless and 'just a difference of being' that we have to learn to accept. I think that is wrong. Very wrong. Yes, I agree: we must learn to accept our condition UNTIL we no longer have to, when a cure exists, we (as it should be in a perfect world) get to choose how we want to be.
Painting every mental illness (not neurodevelopemental disorders) like OCD/anxiety/depression as conditions conversely also implies they're incurable/untreatable which is clearly not the case.
I see the value of both ways, since “Co-occurring conditions” and “co-occurring diseases” each have a certain connotation to them. I think when we choose words, our brains are also aware of those other meanings. Since this video is about Dana’s lived experience of these things, we can trust the creator to title it the way that feels true to their meaning. (I hope I make sense)
@@sejhammer Sure and that's entirely her prerogative and right. That wasn't my point. My point was that with all the Neurodivergence positivity/acceptance that's booming in the public eye, we shouldn't lose sight of what (I personally think) harm and very disabling effects these 'conditions' can cause to some individuals. And that there is an equally valid portion in the ND community/space who really, really, REALLY wants to be free from the way their brain was wired aka become neurotypical (as absurd as that sounds, but hey we've accomplished a lot of things that previously was thought of absurd as a species) - preferably without being instantly labeled as a brainwashed ableist thank you. Personally I view autism/ADHD as disorders, with their negative impacts usually far outweighing the positivess - and I have no problem calling it that. But that's my opinion and no way saying that's what everyone needs to think.
This is where people tell you there is nothing wrong with you, it's all in your head and you're doing it to yourself.
"It's all in your head..."
Exactly. Now you're getting it!
Almost all autistic people also have other mental health or psychological conditions but it's really hard to tell whether these are related to autism or occur for other reasons. It's hardly surprising if many autists develop anxiety and / or depression given the difficulties they face. What is certain is that autism makes treating any other issue much more difficult. Unfortunately many doctors or therapists ignore the autism and just use exactly the same techniques they would use on non-autistic people with those conditions - it can be like putting a sticking plaster on a deep wound and then wondering why the person is still bleeding.
i really dig her new hair !
listening to this video is. it means a lot. I'm autistic and have been feeling these kinds of pain all my life. I've seen dozens of doctors since i was a child, put on holters, did visits for heart conditions, neurological ones, and the response is always the same "there's nothing wrong with you, it's all in your head, it's just anxiety", i even had a doctor tell me, "why don't you drink a glass of wine after dinner every night? it'll help you relax". it's so frustrating because it feels like you're just making these things up in your head when no, i have constant pain in my joints (especially my hands and wrists and ankles, as you do, dana), and i feel like my heart is so heavy in my chest, and if i give too much attention to my breathing it just becomes so loud to the point of being unbearable. knowing that other people feel this way... it just makes you feel less alone. like it's not just in your head. so thank you, really. we might somatize a lot because of the anxiety, but it doesn't mean our pain isn't real
Not just a little bit of validation! So so so much validation ❤
Dyspraxia is one of the only diagnosis Ive managed to get and its only because it was the only thing they caught back in primary school, the testing for it was just stuff like balancing and catching a ball and batting a ball. So basicly if you clumsy, can't catch things etc you likly are, and I do get wanting an official diagnosis for it but considering theirs no treatment for dyspraxia, no real accommodations etc it's not really worth getting it officially diagnosed. Main thing is to gain understanding of yourself and if it fits in the frame of you, then use it self diagnosed, and if something in the future explains things better you can replace it.
omg your hair looks so good 🤩 sorry for the superficial comment but I do have to say I'm envious 😍
Omg no thank you SO much, im still not used to such a short style and how it makes my face look, so even though I like it, I keep getting all self conscious about it. Superficial comments about my hair are very welcome 😂💞💞💞
@@DanaAndersen I was thinking the same, it really suits you
I was born with a rare brain condition that caused many diagnoses. Complete blindness, autism no sense of smell, problems regulating my body temperature. And on top of that, I have complex PTSD.
I find that we sometimes have to ask for what we want directly. Ask to be referred to a rheumatologist. If they refuse, find another doctor and try again, until you get that referral. You need and deserve an explanation for it at the very least, so you can then decide what to do about it. Keep on at it until you get it. Good luck.
PS I spend my life ignoring my physical pain but that doesn't mean it isn't impacting me badly. It often is. As I've gotten older, its effects have worsened in ways I couldn't forsee. Putting on my 'happy face' to disguise my pain and make things easier for others has the consequence that I now also can't get the help I need when I need it - everyone just thinks I'm fine regardless, when I'm really not! Try not to undermine yourself when speaking with the doctor, especially if you mask to cover up the pain.
You have a great speaking style
I was diagnosed with Irlen Syndrome at 11 years old where I wear blue tinted lenses and autistic at 46 years old and they are for life. Thankyou for todays video Dana.
A couple years back, my therapist was trying to help me work through my "social anxiety" and made me realize I don't have it. I do have bipolar, though.
Constant aches, pains and discomforts is so relatable
Your hair is so cool ❤
I've heard one other autistic person say that her joint issues were related to being autistic. For a little statistical context I should add that I've listened to only a few people talking about what it's like for them to be autistic.
See I thought I had dyspraxia too, so I explained it to my doctor who then referred me to an allergen specialist. Turns out I have a wheat allergy that can cause you to walk into things like knocking yourself out from miss calculating the door frame, or tripping over my feet in public. So maybe that could be something to think about.
I just watched another autistic poster complaining about the criteria for autism still used in the medical community, and all the things it misses. I totally agree. It seems to me that the medical community is actually pretty bone-headed about the whole thing, and doesn't seem to be learning anything from what autistic people online are saying. For instance, the medical community doesn't ever seem to address the combination of ADHD and autism, despite the fact that about 50% of autistic people seem to have both conditions. I personally have no confidence that the medical community understands either condition, even in its broadest outlines, outside of lists of symptoms.
In my experience, doctors often don't differentiate between Burnout and what occurs when you have Autistic Burnout.
I unfortunately agree with you, which is why I, as someone who belongs in both the autistic and the medical community, am really advocating what autistic people online are saying and incorporating that into my own autism research and all my discussions with colleagues - even when it puts my name in the business at risk, because it simply needs to change. And I am very well suited to take that mission upon myself and bridge the gap between research, clinicians and the autistic community.
@@henriettajsoneskelin7806 Bravo. Thanks for your commitment!
@@henriettajsoneskelin7806 thank you ❤
Is that a plush of one of the little fat-baby aliens from dr. who? IT SO CUTE!
The adipose! They had a super limited run back in the day and I ALWAYS wanted one, and then winter gave me him last Valentine’s Day 😭
@@DanaAndersen As if this couldn't get any cuter! ❤
Dana, have you been tested for arthritis? Whether it’s from EDS related wear and tear (osteoarthritis) or autoimmunity (rheumatoid arthritis), it can be helpful to know which.
Also, lots of people with EDS have MCAS, which can cause bone pain and digestive issues (like random vomiting). If you try taking a daily nonprescription antihistamine and it relieves any of your symptoms, that’s a huge clue to figuring out if you’re on the right track, without having to do a lot of scary googling and dr assessments. Getting MCAS treatment cured my partner’s life long IBS, most of the vomiting, some bone pain, etc. my partner has clearly had allergy-type issues their whole life, but only collected enough MCAS symptoms for us to figure it out as of a couple years ago. Would have been nice to know years ago.
Also, psychosis can come and go depending on chronic illness severity/physical stress and inflammation. MCAS can be worse during times of stress. Maybe your experiences with psychosis don’t fit a mental health diagnosis because they have a more physical origin. I wonder if you had worse joint pain or physical health around the times your psychosis has been more severe.
Ren is a UK musician that experienced psychosis because he had untreated lyme’s disease. It can absolutely have physical origins.
The more I think about the autistic psychosis video, the more I think you are on to something. Maybe something we are not talking about enough. Because you're right, it doesn't fit with OCD (speaking for myself)... At least not the part where you have to repeat some actions, exp. turn the switch x amount of times to make the bad thoughts go away... But there are definitely intrusive thoughts and sometimes quite extreme, and there's definitely this feeling that things need to be in a particular way otherwise panic sets in.
The example I see often on my feed which I relate to is, cleaning a surface with some kind of disinfectant and feeling like you have contaminated something, like your water cup which is across the room or the plates that are shut in the cupboard above.
I don't know, sometimes I think it's OCD without the compulsions?
Maybe in some people autism causes OCD like symptoms and sometimes it turns into full blown diagnosable OCD.
You're definitely right in that we don't pay enough attention to lower support needs autistics and we're losing out on a lot of information because of that. Information that could help people with higher support needs too.
Unrelated but how do you feel about the trailer for Rivals? 😮
I heard in a lecture that 80% of people with ASD have anxiety and/or depression."
Lets Just say, with high masking autists our life expectancy is 58 and cause of death number one is suicide...
Sorry if i made you question the ocd thing on the psychosis video 🙈
Not at all! It’s the weird internet context of every comment about it obviously came from a place of care and empathy and I appreciated it, but seeing it so many times starts to feel a certain way, but that’s just how it is to get engagement online, and I’m very happy people choose to engage at all!
@@DanaAndersen
That makes me feel better. Ty :)
💚
For some autistics, psychological medications can have the opposite effect than they do with NT people.
We know everything, we worked it all out Eons ago
But we don't tell the NT's for a reason
its a long story :)
Ask away ?
Have you tried doing a low carb diet? Im asking because I noticed I get joint pains when I eat bread. I think its due to inflammation caused by a certain diet.
It may be a gluten allergy, since gluten is a major component of bread. If you are allergic to gluten it causes inflammation, chiefly of the intestines, but also of everything else too. It also causes a lot of anxiety. I developed celiac disease in my late thirties, which came along with major panic attacks. I was later diagnosed with a milk allergy as well as a gluten allergy. When I went off of milk products, the panic attacks stopped, and that was over 20 years ago!
@@steveneardley7541 thanks I may have to do both
🫂
Why are we calling every other mental issues conditions now, instead of disorder/illnesses? Have we all become that afraid of these words?
Because disorder has a very negative context to it and illness has the implication of a cure, condition puts across that it’s something that can be diagnosed and is likely long term.
@@DanaAndersen Right, fair enouhh statement. My only trouble with that is if we treat most mental disorders, let alone neurological ones as conditions, it removes the incentive to research into a cure/reversal treatments which a very valid portion of the population is desperately hoping for. I don't want my ADHD for example to become a chronic life sentence for my children, if they dont want it. This is what I struggle to accept from the ND community - seemingly speaking over everyone that autism/adhd specifically (funny enough Schizophrenia and things like Epilepsy dont get the same positivism treatment) is harmless and 'just a difference of being' that we have to learn to accept. I think that is wrong. Very wrong.
Yes, I agree: we must learn to accept our condition UNTIL we no longer have to, when a cure exists, we (as it should be in a perfect world) get to choose how we want to be.
Painting every mental illness (not neurodevelopemental disorders) like OCD/anxiety/depression as conditions conversely also implies they're incurable/untreatable which is clearly not the case.
I see the value of both ways, since “Co-occurring conditions” and “co-occurring diseases” each have a certain connotation to them. I think when we choose words, our brains are also aware of those other meanings.
Since this video is about Dana’s lived experience of these things, we can trust the creator to title it the way that feels true to their meaning. (I hope I make sense)
@@sejhammer Sure and that's entirely her prerogative and right. That wasn't my point. My point was that with all the Neurodivergence positivity/acceptance that's booming in the public eye, we shouldn't lose sight of what (I personally think) harm and very disabling effects these 'conditions' can cause to some individuals. And that there is an equally valid portion in the ND community/space who really, really, REALLY wants to be free from the way their brain was wired aka become neurotypical (as absurd as that sounds, but hey we've accomplished a lot of things that previously was thought of absurd as a species) - preferably without being instantly labeled as a brainwashed ableist thank you.
Personally I view autism/ADHD as disorders, with their negative impacts usually far outweighing the positivess - and I have no problem calling it that. But that's my opinion and no way saying that's what everyone needs to think.