I would ABSOLUTELY take a pill if it reduced sensory sensitivities so beeping cash registers didn’t sound like somebody was driving a screwdriver into my brain or picking at my skin until it bleeds, but I wouldn’t take it if it resulted in me not having my autistic way of thinking. Adderal doesn’t “cure” my ADHD, but it absolutely helps me interact in the world better. Would I prefer a world where I could just use my brain the way it wants to be used? Of course. But that’s not the world we live in, and it’s going to get worse before it gets better.
YES! I’d love a pill that would give me a couple of hours of full executive function, reduced sensory sensitivities and reduced perfectionism to make things like getting into work easier. But, assuming I am autistic, (no formal diagnosis), I would not want a cure for autism because then I would cease to be me.
I take so many Mast Cell blockers and it does NOTHING AT ALL to calm down my autism stuff. Nothing. If anything it makes it worse because of side effects-the only thing would be they help me sleep cause they're allergy meds. It's frustrating to hear this as an autistic patient who has mast cell activation syndrome. I wish they'd stop trying to cure us.
Yes but do you only want to use your brain that way because you live in a NT world? Pills are just another form of masking. They're great for fitting into our current world but it's becoming more and more clear that this world is broken. "It is no measure of health to be well adjusted to a profoundly sick society."
The issue here is that there is a group of people who see Autism as a problem but spend their resources on pathologising it rather than working to understand someone else's life and how it migjt work for them.
Yet more proof that society doesn't care about us; they just want to be rid of us. They want autistic people to assimilate so they don't have to deal with us. They don't understand and they have no desire to understand. They just want us out of the way.
People do not need to be identical cookie cutter human clones, however it would be wonderful if some aspects of autism could be cured or at least lessened without drugs. I am thinking of things such as anxiety, insomnia, over sensitivity to textures, light and sound, inability to focus and difficulty with social interactions. That being said, I recognize that everyone approaches life with a different heart and brain and I would not trade my family and friends on the spectrum for anyone in the world.
@@knrdvmmlbkknwell first off, you shortened that quote in a way that completely botched it's meaning. Second, well if it doesn't come to fruition, we just keep living the way that we have.
@@knrdvmmlbkkn I think there are hundreds millions of extremely neurotypical people who are heavily marginalized people- with NO ‘cure’ for the EXTERNAL stigma and hate they face. So- ‘what if acceptance never happens’? Yeah- what-if. You don’t see people doing all sorts of identity erasure on themselves- just to accommodate bigotry.
It's interesting. I understand your point, but if autism is a disorder, it means that our brain developed weirdly to the point that we feel physical pain from sounds, lights and so. I don't believe that this is something expected, and definitely in a landscape where we don't have the cities and are up to the dangerous of living by ourselves in the nature, this would mean death in many situations. This means we should not exist? No, I would like to be born with autism? If I had a saying, definitely no. I find it dangerous to try to paint all our suffering as "normal". Understanding and acceptance help? It does. Will it make my suffering, pain, struggles, burnout and etc go away? It won't. I'd rather have never born at all to keep living the way I do. Does this means I'm depressed and want to unalive? No. This is just my reality, no sugar coating will make it different. I try my best to keep myself healthy and still living, because I exist, it's not optional. I'm here already, even tho my autism made me almost die countless time in the past 30 years, my body seems to insist I live, so I live.
@hellequinm I never said that I wouldn't want to be born not autistic What I said (more like what I meant) was it has been a part of my life for my whole life, and that's all I know, now suddenly they're trying to "cure us." I dont know how I feel about being told I am not good enough by just being me and need drugs to be like everyone else. If that makes sense. Sorry not best with words. ^^;
Just got a late diagnosis of ASD. Throughout my life i tried to be "normal" and got board within years of acting nurotypical. Since I did not have a diagnosis I served a full career in the Coast Guard, became a therapeutic farrier, flexion therapist, 30k hours in aviation, 5k hours as a bush pilot, and became an executive Chef. Maybe autistic are not broken, just held back and not given the chance to actually live. My life was full of nothing but abuse, beatings, assaults, and retaliation. As I'm processing my late diagnosis (3 weeks ago) it all makes since. But the stories and education of being forced to be nurotypical has gotten me in allot of trouble even though I did nothing wrong, the bullies just always found me. At one point in the service I was aggressively frisked every day going to work and had service weapons shoved so far under my rib cage the barrel touched my diaphragm and had a glock on my scull. This happened for over 2 years by the senior security forces. As I process my life and find my true identity maybe I'll be able to tell the stories, started recording the abuse in 2011, so there is alot of evidence of how autistic get treated. I was even told after requesting assistance "Stephen Hawking figured it out and I should too" needless to say, I'm figuring it out and justice slumbers.
You aren't alone. Your story sounds so similar to mine. I self-diagnosed about 2 years ago. Things were rough at first, as I had trouble making people believe me. So I don't try any more, especially with doctors. I found time spent with good family and quality friends was helpful. A wonderful therapist guided me to use my own gifts to overcome the worst of past abuse and, since that point, my life has flourished! I hope you do too!
@JB-pk3bz I have adapted to try to look at the positive outcome, I always make it through stronger, though this time it's rough. The VA just sent me to Sierra Tuscon for complex Trauma and medical care for a broken back, wrist, pelvis and knee. Sierra Tucson is a drug rehab that made 3,600 a day and did nothing but force me to do nurotypical drug rehab classes for 30 days, I've never even used street drugs, but they promised health care in a day or so every day. I just got back to alaska last week worse off then when I left. My brain has never felt so stressed and it completely shut down the past 5 weeks, it's just starting to come back online. I saw a green flash and heard/felt an electrical pop 2 nights ago in my brain as if synapsis had made contact as my brain is recovering. That was a rough experience.
@@LivingAlaska I wish I could talk more. But in real time, a phone call informed my loved one is admitted to the ER. Gotta go. LivingAlaska, God bless you and keep doing what you're doing. Your way.
your accomplishments are amazing !! I was proud of myself just being a cashier while autistic, then I became a mortician. WE are so God damn capable 🙌 now im gonna be a barista just because I CAN
I felt your story so deeply, as I'm also processing my late diagnosis (last year in May). I was bullied since the kindergarten (even by teachers), and I'm still revisiting my history with a tinge of bitterness. Like you, I also went through a long career, became a doctor, then a researcher, and at the peak of my "success", a violent and deep burnout (which now I know as an autistic burnout) hit me like a truck and I'm still trying to rebuild the pieces. I wish you a successful path to your new self-discovery and healing from the wounds of the past. People tend to think we don't have feelings, maybe so they can't feel guilty for hurting us.
@@josephwright5921 Say what there is a big difference between having a pancreas that doesn't work and reprogramming someone's brain. There is a reason that the brain is one organ that they can't transplant as the professionals agree that it would fundamentally change who the person is.
@@josephwright5921 diabetes does not affect how you perceive the world and how your brain opetares. autism does. if the intense life long passion for art (and nature, but that intensified later..) is part of my autism, taking that away would, to me, feel like someone ripped the essence of life away from me. how about just a full on lobotomy so i can be a mindless robot essily put to work instead if we're going that way already, hm..? (do you get my sarcasm..)
OMG Orion! I am saving this video to present during my grievance hearing! I am in the process of grieving this very point of neurotypical people telling me what's best for me or what they believe I can handle. My employer has refused to accommodate the most important of my needs at work, saying that I will be able to work under the conditions THEY set out. In some ways I appreciate the fairly new found respect of neurodiversity but in other ways it seems to have opened the door for even more misunderstanding of those who do have different brains. Who the hell do they think they are, telling me what I can handle?! People who have never met me, and people who have only known me a short time, think they know what my limitations are.... Me..... who I've known and lived with my entire life.
Get a lawyer. Show them your diagnosis paperwork. Get a note from one of your doctors. That’s against the Americans with Disabilities Act in the US. There have to be laws in other countries as well.
I was placed on meds for bipolar disorder (a misdiagnosis) when I was 5 years old. The side effects along with traumas of being held down by my "family" as they force you to take ground up lithium pills that was mixed into my apple sauce. Tasted extremely bad, and messed with my ability to feel anything. I will never let someone try to chemically change me in that way again. I have lost a lot of trust with the psychiatric system since then due to the prescriptions they prescribed to me. I was completely and utterly misunderstood but they kept throwing drugs that messed with the one thing that made me, me. They were messing with my brain! If that wasn't a boundry being crossed, I don't know what the #@$% is.
I think that in future, MCAS is going to actually be the formal diagnosis, and all these other conditions (ASD, ADHD, HSP, etc) will be described as symptoms of MCAS. There's way too much overlap to be coincidence. That doesn't mean we should be looking at this information as a cure, but rather a way to lessen the physical and psychological toll having these conditions has on a person's quality of life. Just a thought 😊
In my opinion this could be indeed for some cases related. I personally think there are multiple genetic combinations that can result in this neurotype. If we find some treatment for the sensory processing issues and the brain being clogged up by just too much information causing overload and meltdowns... This is worth studying and I cannot quite understand why Orion is so against it.
@@laura5425 He is against it because any time they are looking at things like this it is phrased as a potential cure. It isn't promoted as a way to reduce symptoms and if they did then it would be so that they don't have to provide services because we would be more 'normal'. It also highlights that people doing this kind of research continually ignore that there is a strong hereditary factor for autism/ADHD.
@@amandamandamands That's a fair critique, but I think the issue here is validation of the research is different than what doing the research is for. I don't think you can imply they're suggesting that changing the mitochondria reaction is going to change your actual brain structure much.
@ OK but the issue is that currently diagnosis is based on the deficit model, and if you are trying to get a late diagnosis and managed to find ways to do the things no matter how maladaptive they are then you don't qualify for diagnosis (people get turned away because their social skills are too good, they have friends etc). Reduce the stimulation that makes us obvious to the outside world, we can cope better and so are more able to do the things, therefore don't qualify for a diagnosis anymore. They have done studies where they do early interventions with toddlers rather than giving a diagnosis first, the study then said that half of those children no longer met the criteria for an autism diagnosis. How many of them will later on when demands become too much who knows but they don't qualify right now anymore because they are being brought up in a supportive environment. What you are talking about is giving our brain a supportive environment and then we no longer meet the current criteria for being diagnosed. Sorry but in real terms that means eugenics and they can say that autistic people no longer exist.
G'day Orion, it''s that retired biochemist guy again. Two thumbs up for this one. Don't worry about the pronunciation. You got mitochondria right on the second try, and some of the words after that I don't know! 😀 You've highlighted a lot of the false assumptions they started with, which kind of invalidate their conclusions. There's an awful lot of 'might' and 'could' in these findings, but seemingly little in the way of beneficial facts for us. There's a place for papers like this in alerting the scientific community to an area for further research (which would be why it was published), but nothing really we can take on board. BTW, Imagine the furore if some of us autistic scientists researched a cure for being neurotypical! 😳
@@peterwilding1203 They wild need a large scale longitudinal study. These small studies that get at hyped --in physical and psychological medicine--irritate the hell out of me. Like, come talk to me when you've looked at 10,000-20,000 people. (I wanted to be a psychologist when I grew up, and I like science and especially medicine!)
I actually think you're a bit off with your opinions on this one, Orion. No hate at all, no animosity, just a disagreement. If there were either natural remedies or some meds that could lessen some of my symptoms, I would love nothing more than to take them! I take adderall to supplement the serotonin levels in my brain and it lessens the severity of my emotions to something much more manageable, it often helps me a little with executive dysfunction, and it makes my thoughts much less scattered so I can focus a little better. It doesn't cure me, but it's a HUGE crutch that I wouldn't want to live without. It would be the same for autism, Orion. If there was some autism equivalent to adderall+adhd, and I could go outside and the sun doesn't hurt me as bad because my pupils close faster, mouth sounds don't anger me as much, I can hear what people are saying in noisy environments just a little better, smells don't drive me insane, and I wouldn't be as adverse to touch as I am now..... I would do it in a heart beat! It wouldn't change who I am at ALL. It would simply make life easier. It wouldn't have an impact on social things besides being able to tolerate social environments better. I wouldn't be so overwhelmed every day. I wouldn't get burnt out as often, or as long. It's obvious idea to me that autism meds/supplements would be good, and wouldn't be a cure at all. Don't you want to lessen the negative symptoms a little? It wouldn't change you. It would simply allow you to be more yourself because you would be struggling and suffering less. Your identity of yourself and your autistic identity do not lie within how much you suffer. They are branding it as a "cure" in the same way that dandruff shampoo "cures" dandruff, but it doesn't really. Because if you use it and then stop, the dandruff comes back. Taking meds to "cure" -- read: alleviate -- symptoms would be a great thing! 13:50 You say there are no symptoms, but Orion, you KNOW there are. They can do studies on this more and if mast cells are an issue they can make medicine to help with that, then in return we would have less brain inflammation. Van Gogh suffered greatly from his mental health disorders. He made his best work when he was HEALTHY, not when he was having breakdowns and episodes. He was this amazing person when he wasn't suffering from the symptoms of his disorders. This is how I am, too. And I'm sure it's how most, if not every person is. When I am suffering from my adhd and autism symptoms, I cannot function the way I want to. When I am properly medicated and eating and sleeping and exercising well, I do so much better. I am more artistic too, and creative. I draw and crochet. I haven't drawn anything in over a year because I've been dealing with so much. I hope maybe this can kinda help you see what I mean. If we took autism meds for symptoms, we wouldn't stop being autistic because it's obviously not a cure. I am and will always be adhd no matter the adderall or coping strategies and life changes to accommodate the adhd. I will always be autistic even if my sensory needs become manageable to the point where I feel less disabled by life and living. The point of glasses is to correct vision impairments and increase quality of life, so one may see correctly and be more independent and happier. The point of meds for disorders is to correct brain chemistry impairments and increase quality of life, so one may function more correctly and be more independent and happier. You say "The concept of treatment is problematic." And that just does not make any sense at all, Orion. If someone cannot walk they receive a wheelchair. If someone cannot see they get glasses or a cane and maybe a seeing-eye dog. If someone is sick with a cold, they get medicine to treat it. If someone has an injury, they receive treatment. These are not problematic things. Autism is a disability, why would you stop people from wanting to lessen the severity of the cons that come with it? There are so many negative symptoms with autism, and you contradict yourself multiple times by saying you want help, you want your life to be easier, but when that help to make your life easier comes in the form of a medicine that lessens the inflammation of your brain, you say no and that it is problematic?? The brain is a very serious area to be inflamed, as well as the spine. If there were medicine to make my gut less "leaky" and stop my sensitive brain and spine to not be as inflamed, why would I not want that? Who wants to have an inflamed brain? You say you're scared of who you'll be if you aren't suffering from sensory issues, why are you convinced that who you are is someone who has to suffer, or else you aren't you? Why are you convinced that living in a state of overwhelm is who you are as a person, and if you stop being overwhelmed regularly, that you will be a different person? All you will be is healthier and happier. Your personality won't change.
So we’ll said! I was going to comment trying to make the same point, but you did it much better! I can easily imagine a life where I’m struggling less with dis-regulation and anxiety, but still me or even more me than I am when I can barely function or handle a simple social interaction.
Great way to put it! I want to be myself and not change, but I also don’t want to suffer endlessly. If something helps me function better without changing me, then I’ll take it everyday of the week.
@ Thank you! I hoped I wasn't rambling too much, but made my point well. Thanks for letting me know I made sense LOL! I had said to someone else in the comments that my brain being inflamed is bad! That's my ME in there! She wants to feel better! I would be able to be more myself if I wasn't tired, and overwhelmed, and burnt out all the damn time. My mom is sad and she almost cried one day because I used to be this fun excited person and now it's all just avoiding things because I'm overwhelmed and exhausted. I notice myself not saying something funny like I used to because I'm too tired. It's sad. I want to be myself again without all the sensory problems blocking me.
Well said! I agree with you. I would rather not have to rely on medications, but that’s a moot point. Your comment spoke directly to my internalized stigma regarding psychiatric medications. Now that I’ve found a medication that at least helps decently with my symptoms, I honestly would hate to go back to how I used to feel. I went through so many rollercoasters of intense emotions and intrusive thoughts.
@@haleys4899 I totally get you becasue I had the same story - I was against meds and then came to a point it was the last resort to keep me alive and helped me to get back to being healthy and now I was even able to get off them because as my psychiatrist said - I don’t need them anymore.
Eating whole foods and avoiding processed and ultra processed foods has actually helped me function better. I do a ketogenic diet, which is little to no sugar/carbs and instead get my energy from eating saturated fats like butter, tallow, lard and sometimes heavy cream. It’s not that it “cures” anything, but if it helps my working memory, concentration and energy (all this made me function a lot better, it took two weeks of adaptation personally and I have done it since 2018) I’ll take it everyday of the week! Not a “cure”, still being my autistic myself, but it helped me greatly.
Be careful with a diet really high in animal products. There was an article about someone who was on the carnivore diet and his cholesterol level was so high that it saw lipids (cholesterol) oozing from his blood vessels when he showed up at a Tampa hospital recently. He experienced painless, yellow eruptions on the palms of his hands, soles of his feet and elbows for three weeks. That was after being on the diet for 8 months.
Be careful with comments that emphasize one case gone wrong over thousands that have had miraculous improvements in their health. Because of comments like these, people that have been chronically ill with no answers from the medical establishment delay trying a diet that could make them improve their lives and even get their illnesses into remission.
I have a colleague who due to allergies, etc, cannot eat fruit or vegetables so he's essentially on an all meat and fat diet with a few supplements. It's not healthy in the long run but keeps him alive and functioning.
My kids and I all have MCAS and Autism. We are always navigating and regulating. We are grateful we know what's going on so we can ride the waves of our bodies and brains. Never a dull moment.
@@BeeWhistler I'm sure, you know all that already, but I still want to share some stuff that helped me: - SIGHI low histamine diet - loratadine and ketotifen as baseline antihistamines with little side effects - the occasional ibuprofen to block prostaglandine (makes these migraine headaches) - regular vitamin C - at least 500 mg quercetin daily - some people benefit from daosin, I don't Maybe someone else can find the building blocks to get to a better level of health and life quality... All the best to you and your daughter!
I’d love a cure. Maybe I’m not seeing my disregulation, lack of executive function and inability to process social interactions, as inexorably bound up with my personality and the things I enjoy about being me (including intense interest in subjects, tendency to hyper focus, and creativity). Maybe they are closer linked than I realize, but I can easily imagine having the good without so many struggles and I’d love that 🤷♀️.
Same! I see so many autistic people saying they would never want to be ''normal'' and autism is who they are and they don't want to change that. as a late diagnosed autistic, please make me ''normal''. I stuggle so much with daily life because of autism that I cant do the things I love either.
@@crocodileSweetPicklesThe thing is, being "normal" is an illusion. Nobody is normal, not the Neurotypicals, nobody. They are just one way of being, the same way you are. Neurotypicals are highly dysfunctional people, it's just they happen to be the majority, which makes it seem like you're the one with the problem. You aren't. If you can quantity it like that, your outlook towards yourself might change and you can be a lot less hard on yourself. Focus on what good things you have, the same way they do. You have the right to take up as much space on this Earth as the Neurotypicals do!!
@@crocodileSweetPickles I feel you so much. My executive dysfunction is driving me nuts and my ADHD wants me to explore the world... which I FUCKING CAN'T because of my autism... Apologies for swearing, but I am still in the grieving phase...
OK but that is like saying that people in a wheelchair should all be cured because life is so much easier if we don't have to worry about installing ramps and other things to be disability compliant. The actual issue is that being neurotypical is considered the standard and so anything else isn't accommodated for. It is the same way that the world is set up for the extroverts and it is considered that there is something wrong with introverts because they can't do all the things.
I think we will learn there is a subgroup of autistic people who fall in the POTS/EDS/MCAS/AuDHD who do benefit from treating their mast cells, but it won't make us less autistic, but hopefully it will mean less burnout and brain fog. Those of us in this overlap of diagnoses know how painfully exhausting life is, especially for those of us who have to maintain a job for health care.
Agreed! Treating the POTS/EDS/MCAS/ME/IBS would be great. But it isn't Autism that they're treating by treating the neuro-inflamation. How I see it is these conditions co- occur and they may make some of our "Autistic symptoms" worse but doesn't everyone have trouble thinking and being social when they're sick or in pain. So getting rid of the things that make our lives worse is great but stop selling it as a "cure" for autism.
Me! That's me! 😅 I started eating gluten free to treat a different condition, but I've found that I have less brain fog and better emotional control when I'm off gluten. Still absolutely AuDHD, but not flying apart at the seams
Is not about "curing" it's about reducing symptoms and improving quality of life. Non verbal ASD have become verbal by reducing inflammation. My stress and anxiety greatly improved when I reduced my inflammation. For reference I was also born premature.
I'm crying. I'm an autistic person who experiences anxiety at the highest degree to the point where I have no quality of life at all, born 3 months premature, and have been getting random allergic reactions I can't pinpoint for years.
As an autistic woman I'm taking meds to function. I'd rather have a cure because i don't believe it will change my personality but will help me navigate this neurotypical world. I also believe there should be more support, understanding and awareness from the environment. One thing doesn't exclude the other imo. These two things should go hand in hand. Btw i just got diagnosed at the age of 45 because of my peri menopauze symptoms (one of them being activated mast cell symptoms). With this brainfog i can't even mask anymore. One of the reasons so many autistic woman get diagnosed during this period of their lives i read. Sensory issues have worsened, this list goes on. So i can see why there's a link between autism and mast cells in that regard.
When I had brain fog it was because I was in burnout, You can't medicate your way out of that, you just have to simplify your life and give yourself self care. It took me a good 5 years to be over the worst of it and I am now aware of warning signs that I am becoming overdone so that I can step back from the things.
@ I am not in the same situation. It's not burn out, i've had this since I can remember but it worsened since peri menopauze. There are several studies that link brainfog to this especially in neurodivers woman.
For anyone interested, you might want to check out the new documentary about breaking the silence about menopauze. It's called "The M factor". This theme was a huge eye opener for me.
I’ve recently requested my doctor check me out for this. I’ve haven’t heard back from my doctor about this. But I’m going to push her harder for the best test to see if this could be why I have year around allergies and the many more symptoms I experience that match this syndrome. Thank you again!😊
I don't think these things can "cure" autism, but I have certainly noticed in myslef that they make my symptoms much worse. I am currently struggling with too much histamine circulating and cant seem to figure put how to get it under control. Quitting premade and ultraprocessed foods has helped, and that leads me to think that modern environments with all these chemicals our bodies havent evolved to handle may be making symptoms worse for everyone. Additionally the body releases histamine when it's stressed, any kind of stress, and autism sypmtoms are exacerbated by stress.
Honestly I take an antihistamine every day since covid started. I used to only take them when my hay fever was playing up but didn't want to take the chance of having a snotty day and everyone thinking that I was contagious. You just need to find the one that works for you as Claratyne, Telfast and Zyrtec all have different active ingredients (out of those only Claratyne works for me)
@amandamandamands I take hydroxyzine and trazadone and a beta blocker to sleep and there are nights when that doesnt even work. I've been hearing that antihistamines can cause more histamine to be released since it only blocks receptors, but I cant seem to find any actual research reporting that, but it makes me wary anyway
Try the SIGHI low histamine diet. Sucks, I know, but it helped me a lot although it makes life much more difficult... Have posted some more info here on meds and supplements that are evidence based and help a little as well
Great job explaining things. One problem with this topic is that people tend to gloss over things which they believe are self evident. I will always recommend this channel to people who are trying to catch up.
I think there is a group of us very able autistic people who are dominating the conversation, mean while there are plenty of autistic people who can’t deal with social media (or other people in general) or those autistic people that can’t comprehend and/or communicate well enough to be in this discussion. Taking a cure means change and change is generally not something us autistic people are fond of/great at. If someone has found themselves a place that works well enough, so now might be a bad time to take the risk. While others find themselves in a situation already requiring some kinda change and might gladly take the aids they can. I see several comments about not wanting it, because they don’t know who they are without it. I sooner think people will be disappointed with how little a cure affected their already adult life/brain, than people actually having to more fully figure out their lives/identities. And those people that would really figure themselves out are those who were severely limited/disabled by specifically their Autism. And those people are the people underrepresented in places like this. I take Ritalin for my ADHD, it just help my brain doing it’s thing better. It doesn’t undo who I have become due to decades of not taking it.
I am ASD 2/3 and doing a Doctorate in lived experience of disability as well as studying to work as a music therapist. This conversation made me realize how fucking absolutely adamant I am about Neurodiversity Affirming. I am intimately aware with many of our struggles and totally uphold the choice for people with Autism to make their own decisions as to whether or not external interventions are right for them. My personal journey has been one of gradual self understanding, self compassion, self acceptance and the premise of "curing" autism is fucking disgusting to me. THere's nothing wrong with us! I'm a queer person of colour and I would feel as horrified as I would with regard to conversion therapy/camps for LGBTQ+ stuff or... Actual extreme racism, eugenics etc. Nah. My people don't have a problem. And it's not on us to have to change ourselves to fit with someone else's oppressive, dominant world view or way of being. --We can't do that and we shouldn't have to. We've tried and it fucking killed many of us. Love to Orion for facilitating a conversation. Love to the community for helping elucidate and simply the values I am still discovering as I progress on my journey through life and who I want to and must be in the world we share. Love you all. Have a wonderful week!
"My personal journey (...) disgusting to me." Good for you, I suppose. But _others_ may want and need it. "THere's nothing wrong with us!" No, apparently _something._
Sorry but I don’t agree at all, especially calling it “disgusting”. It’s a privileged level 1 perspective to only view autism as a different neurotype, and even then many people who are “high functioning” would rather not have it. Autism is by definition a disability. We should of course prioritize the acceptance of autistic people, and only viewing us as our disability is also wrong like so many NT do. There is a middle ground between viewing us as diseased freaks and pretending that autism is completely normal and just a different neurotype. I’m pretty sure a lot of autistic people would benefit from treatments that help with sensory sensitivity, ability to speak, prevention of meltdowns, issues with connective disorders and depth perception etc. Also comparing a disability to race and sexuality doesn’t make sense. Gay people suffer from homophobia and living in a heteronormative society not being gay itself. Same with being a racial minority. I am a black autistic woman, and there is nothing wrong with being black. Being white would make my life easier but that’s only because of racism. Autistic people suffer from both ableism and autism itself. Even in an ideal world, autism would still be a disability. So yeah.
I am properly diagnosed with ASD. I was in a car accident and was prescribed a strong anti-inflammatory. It made my brain feel crystal clear and I was suddenly happier and more productive. It was nothing short of miraculous. This is just anecdotal but I have personally been researching what I can do to reduce inflammation. I wouldn't call it a cure but it does make me feel better which is profound.
What was the medication? You can reduce inflammation in the body by taking an allergy pill every day, such as a zurtech.Or a claritin and yes you could take them for a long period of time. You can also Go on a low histamine diet.
Exactly with the correlation and causation. People with autism are more likely to also have EDS, and vice-versa, which, is also related to genetics. With no cure. People with EDS are more likely to have POTS and MCAS (mast cell activation syndrome), which are also more common in people with autism. Coincidence? Maybe. But all of these things link back to.....genetics.
I can’t thank you enough for these videos ! You are addressing my concerns and raising ideas I have too. Amazing! I just listened to a podcast with you and Jen discussing Autism symptoms in women and men and the differences! Awesome work by both of you. Of all the podcasts I listen to you’re the best and🎉❤. I feel like some of the episodes were created directly for me ! WOW ! It’s amazing dear man. I’m so thankful for your support and input especially right now. After 4&1/2 years of being homeless and highly disabled both mentally and now physically ( wheelchair) two broken backs and both arms and I’m going blind and deaf as well. My life is a mess. The V.A Veterans Administration, I’m a veteran has pretty much broken me by many misdiagnosed injuries and mental issues. This has led to dire straits at times. Anyway it’s great you are taking specifically about late diagnosis.
I'm on the Spectrum and I have an allergy to artificial sweeteners that every Doctor tells me I can't possible have because no one is allergic to artificial sweeteners! Artificial Sweeteners cause me to have stroke type symptoms and swelling in the brain. But the MRI scans can't find the bleed that would normally happen with a stroke! I do my best to avoid artificial sweeteners of any kind but occasionally I fall foul because it's hidden in a food that is labelled natural but is actually nothing of the sort!. On these occasions I've been hospitalised unable to speak, unable to write, with paralysis of the limbs which is very frustrating because I can't communicate or do anything. My last visit a year ago was the worst and very very frightening. Orion speaking about this link between Mast Cells, Gut/Brain, and allergy responses makes me wonder if this is what is happening to me? I will probably never know.
Say what, the process for how a few artificial sweeteners are made is something that people on a low FODMAP diet should stay away from. Also anyone can be allergic to anything, might be rare but it happens. I try and stay away from them for that reason and I don't like the taste of them in soft drink. The hard part is that they can be called so many different things and you also need to know their number as that is often used because people are weary of aspartame for example. I just looked up the wiki for them and it is such a long list.
Orion, that’s really an excellent assessment you made here! Fundamentally this mast cell hypothesis as a ‘cause’ for autism seems very biased in an assumption to find some kind of pathology as a cause. Mast Cell activation may be more prevalent as a symptom in autistic people, but as you pointed out quite well that does not prove causation. Mast cell activation syndrome is not a very easy medical diagnosis and pretty complex. Mast cells can be basically over reacting in affected people. Sometimes this can be triggered just by stress. It would not be surprising to me to see an increased incidence of mast cell activation in neurodivergent populations that are dysregulated. An overactive immune system and autoimmune problems are problematic equally for neurotypical or autistic people and are often undiagnosed or misdiagnosed.
At my job a new store manager recently got hired and she’s been rude to everyone and recently was going after me because I’m introverted (doesn’t know I’m autistic) but she said something rude about me in front of coworkers and when people do things like that (not only am I introverted but also have social anxiety and probably selective mutism) it makes me want to talk to them even less and not have much respect for them, I was so annoyed that she attacked me for things I can’t really change and I’ve been learning to accept myself for being a more quiet person so she probably just is upset I’m not bootlicking, I don’t like that people try to change our autistic traits, it’s painful and offensive
@@orionkelly thank you for all you do! you are my favorite reference for late-diagnosed autism. Plus you make me and my fiancee laugh as we learn. I hope some day I can be interviewed. I saw you do that sometimes. If you know of a support zoom group please let me know . Thank you for helping to be my voice when I'm frustrated with my loved one's lack of interest or knowledge.
When my doctors tried me out on Strattera for ADHD I started having wild side effects. Flu like symptoms but more severe than just the flu. I tell my doctors about it and they told me it wasn't the med... that's not a side effect of that med and I have something else going on. I stopped the med on my own and the side effects cleared immediately. It sucks being on the spectrum.. in so many ways that normal folks just don't understand. Ok and stressed out pregnancy... I've known my mom was stressed beyond reprieve during her pregnancy with me. I've always wondered since about the age of 25, if the stress she was dealing with had an affect on my development. Listening to this podcast just adds weight to it.
I hear ya. In 2023 had a reaction to a new antibiotic, knew it was a reaction because it echoed reactions I'd had to other antibiotics in decades past. Went to Urgent Care where doctor told me it could not be a drug reaction or I'd already be in hospital, therefore you have covid, well ... 3 covid tests later ... not only did the tests show no covid happening, the different third one showed no covid ever ... but ... Doctor insisted I had covid. 🙄🤔 I went home, disregarded the covid info, trashed the antibiotics, and two days later was back to drilling tiny little holes in model trains. ➡ Eventually my brain went, _"Hey! There is medication info on the internet!"_ So, I looked up the antibiotic ... turned out I had 4 of 8 things listed under the "If This Happens Contact Your Doctor Right Now!" heading happening. 📃 Have been to that same health care place several times since for regular Dr appointments and EVERY TIME they email me a satisfaction survey I tell about that incident in the comments section of survey. I AM NOT going to let them forget that happened.
Ritalin and Stratera and a number of other meds for ADHD and each and every one of them made me dreadfully nauseated so I'm glad I tried them but left me with the ADHD and all that entails...
i was on straterra for a while too, what a terrible drug. i guess it works for some people, which is great! but for me, it didn't help my adhd AT ALL and just made me develop really bad insomnia and some other symptoms i don't even remember because that part of my life sucked. i was only on it for less than a year but it was enough. i hated it.
Thank you, Orion. I keep getting pressure to put my newly diagnosed autistic kids into the local ABA therapy, and I’m just not interested in changing their behavior with dog training. As an autistic person myself, it doesn’t sit right with my gut at all. I’m going to look into the mast cell activation stuff more to see if we could do something to treat our co-occurring medical issues.
If you can get funding for it a neuro-affirming OT is great. Mine the first thing that she did was work out a sensory profile for me to help me work out what things to do more of because they help regulate me, and what things to put in place to help deal with sensory issues (I now wear noise cancelling headphones most of the time at home and have loops for when I am out, I also wear glasses for light sensitivity). The other thing that an OT will do is help you learn how to do the things or if you are having trouble doing them because of dyspraxia for example then they will help come up with alternative ways to do the thing. Depending on what else is going on a speech pathologist can also help.
@ Cool, be aware that most OT's specialise so you need to work out if you need a mental health one with autism add on or if you need one for physical stuff (the mental health ones can do small amounts of working out accommodations but if it is because of dyspraxia then they might not be able to do the whole thing)
More people do care than you could ever imagine. Obviously the medical or scientific teams that have done this research do care. I give a shit , I love dearly my neurodiverse grandson. And you help me understand him.❤ A great deal of humanity is impacted by autism and dearly love their children. As diverse as autism is so are the ansews to its complexities.
Thanks Orien. You're so well educated and such a strong advocate for "us lot" You're humour and authenticity have really helped me to process my newl dual diagnosis of AUD-HD
I'm 74. Not been diagnosed high functioning autistic. I always react to substances, but not an allergy. Also have gut problems. And genetic autoimmune disorder... Nerdy girl. From the SE Wisconsin shores of Lake Michigan USA:) 👍🤜 always protecting the underdog! Ive done much of that in my youth. Revolution in my blood.
If you react to foods and they don't show up on an allergy test, then they could be intolerances. You work them out with a doctor or dietician by a process of elimination. It would also explain why you have gut problems.
I will preface this by opening this with the fact that my scrambled egg brain is feeling particularly rubbery today, but... I think you may be dead wrong about this one, or that we have both gotten completely different impressions about this. To me, it doesn't feel like a suggested "cure" for ASD, but rather a potential therapeutic aid to help those with ASD manage their condition and to help identify and isolate comorbidities. SSRIs don't "cure" depression, and stimulants don't "cure" ADHD - they help sufferers manage them (sometimes). To me, the potential for future mast cell therapies being used to "treat" ASD feels more like an antidepressant for ASD. As for the prenatal advice and observations; that all sounded pretty generic to me, and for the most part is just good standard practice. If you've got autism in your genes, you've got autism in your genes and nothing is going to change or prevent that, but if the standard good advice also helps minimise the risk factors of issues associated with mast cells and that these same issues complicate the disregulation and sensory issues those with ASD deal with on a daily basis, then where's the harm? It doesn't feel like it is trying to erase autism but instead help sufferers manage the bits they struggle with. I genuinely love your content. As a fellow Aussie, having someone directly address our specific political and social issues on a platform like this is awesome, and your perfectly recorded and produced voice and audio makes your content so much more accessible for those of us with auditory issues than pretty much any other channel here. But, if I may make a suggestion - spell out the "difficult" words on screen in post-production. The generated captions are far from perfect, and as you identified earlier in the video, our accents are sometimes difficult for internationals to understand and the correct pronunciation of many of the more scientific terms isn't always obvious simply by reading them. It might also help to look up the pronunciation of some terms (like "mitochondrial" ;) ). I'm a bit behind on your more recent videos, but I'm looking forward to fixing that!
Oh yes, thank you, I had exactly the same feeling, that he went down another rabbit hole which diverges from what the actual research is aiming at. Thanks for having made the effort of this comment. Mushy brain here, as well ^^
Being an autistic and Epileptic in which no doctor in the USA made the connection between STRESS HORMONES and my EPILEPTIC GRANDMAL SEIZURES that they changed the names of to confuse those that have them. Stress of any kind be it being scared, overheated but not to the point of heat stroke or other body overheating issues, pain, and illnesses cause my CORTISOL levels to skyrocket, which causes hyper alertness just prior to my having a grandmal seizure. Epilepsy has a higher probabiloty for those who are autistic compared to neuro-typicals.
I also have a seizure disorder and chronic migraines and I am beginning to believe that along with the autism my brain must be really in bad shape! It's a wonder I can think! I also suffer from ADHD and some snarky anxiety so sometimes I wonder who I truly am 😮 It's miraculous that I love myself (praise God) and just see myself as a truly messed up loving and loved person, no matter what the cost i don't need anything medical to treat me, I just need to be respected and accommodated. Dream on! Life's too big and short to make a problem where there isn't one... sorry to ramble on but maybe it'll help someone to get it together.
When I was a kid, I had what looked like seizures, but when I was tested, it turned out that I didn't really have seizures. I asked my mom about when I was a kid, and she said I was just stressed. While I think she was right about it being stress, I am now shocked that no adult seemed to care that I was such a stressed-out child I had non-epileptic "seizures."
Not me, sitting here watching this with a red puffy face, exhausted, coughing, with severe gastrointestinal issues. Nope, it's not covid, or the flu, have I tried resting? Yes, any new food, skin care, anything? Nope. I do love leaving the doctor with no answers. I am constantly being bothered by inexplicable symptoms and nobody wants to investigate autoimmune issues or any other issues that can occur more frequently with autism. Ok, I find that annoying and dismissive, but more importantly why am I constantly dealing with pain and inflammation (sometimes visible) if I'm physically healthy?! I don't need to understand the social aspects at play around me! I know I'm bad at that, idc, much sometimes….it is what it is, and it's me! I would like to not feel like I was hit by a truck recently on a regular basis though. I'm walking around like someone twice my age currently and I've basically been told I'm likely faking, as there is no cause for the pain and symptoms. Idk, I feel like I have some physical issue. It may or may not be related to my autism, but I somehow doubt that curing it would “cure” my autism, not that I'd want that. It would definitely help me to be more included in society, I was always autistic, but I was willing and able to be more social when I didn't feel like this physically. I still had few friends and strange interests and stims, but I felt well enough to be with others. I don't want a blanket treatment or a cure. I like some of my autistic ways of being! I'm a math magician and I'm going to win the spelling bee and probably the trivia game too! I've caught things that would have been on fire in my house soon and stopped it early more than once. I want care for my body without either having my autism make my physical health be all but ignored by the medical community OR having to treat my autism with my body. I don't need to treat my autism! I would desperately love some help for the (possibly related) physical health issues.
Autoimmune conditions are the devil, chances are that if you have one, you’ll go through months or years of being told “there’s nothing wrong with you”, and, if you’re lucky, getting tests that, at best, show slightly elevated white blood cell levels or mild anaemia. Women are more prone to autoimmune conditions, and we already have difficulties with getting doctors to take us seriously when we say that we are in pain.
I wish you enough strength to stand strong and not give up. We are often not taken serious when at the doctors because we don't complain in the "expected" way - which I still don't understand. Track your symptoms and the foods and moods you are in. I know it sucks, but like that I was able to figure out that I had serious histamine issues. Tomato soup was the final puzzle piece... For you it might not be MCAS, but have a blood sample taken and screened for the interleukines and TNF-alpha. They correlate with MCAS and auto-immune issues. By the way, there's a clear link to rheumatoid arthritis as well. My mom already got it (fibromyalgia prior to this)... Good luck!
@ lol! I too cannot enjoy tomato soup! It’s odd because I can have pizza and tomatoes, but not spaghetti-o’s or certain foods with less good red sauce. There also seems to be a correlation with it being from a can. I have presented this evidence to strange looks, but it holds! About a quarter of a can of tomato soup has sent me to the hospital, twice. (I really liked it!) Unfortunately it sets off a gastrointestinal fit where anything retained in the GI system will be ejected painfully and I will need IV liquids to get through it Ps, ty for the info! I will look into testing for those. Any answer or even path to get towards feeling better, I’m all for it and all ears!
Unless we are talking magic, it wouldn’t erase the fact that you beings good at math and liking it. But you might find yourself not as easily stuck & obsessed about it.
Hi Kelly, I really enjoy your informative videos. I have an autistic partner that I do love very much! I don´t see a cure like deleting who you are but alleviating the symptoms, helping to make life easier and more comfortable and in total strengthening your personality! With or without cure you're a great human being! We have tried Dihexa, SS-31 and Saffron and it can really quiet make a difference
I’ve actually had problems with “leaky” gut - my surgeon said I experienced a microscopic leakage in my intestines - I had needed emergency surgery to clean my abdomen due to the leakage and doctors couldn’t understand how it happened because they couldn’t find any evidence of a tear, but my abdomen was full of bacteria and gas…. My experience got added to a study! (Not this study haha)
It's toxic bile. Lower your vitamin A intake significantly eat red meat and soluble fibers to soak up and eliminate toxic bile. Over time the gut will heal. Or don't. I'm just providing new info to consider.
I would like to explore the inflammation and if it helps sensory based migraines and the inflammation response to hypermobility. that might be something they could work on.
Hypermobility and mast cell disorders are incredibly linked. I have the holy grail of ADHD, ASD, MCAS, POTS, and hypermobility. My sensory issues get worse anytime I have a MCAS (mast cell activation syndrome) flare up. The current theory of researchers is that mast cell mediators (the chemicals your mast cells store and release) disrupt the structural integrity of the collagen in your joints, leading to hypermobility. You can kinda think about it like this. You have a factory making cakes, and you have a machine that needs to release flour and eggs and sugar into a bowl. But MCAS peeps have a broken machine and we dump egg twice as often. In a cake recipe, if you have too much egg, the cake won't be structurally sound and it will be rubbery and nasty. So that's kinda what's happening with the MCAS and hypermobility connection. The cells are trigger happy and release too often. Two of the mast cell mediators are prostaglandin, which is the pain signal, and cytokines, which tell your body to be more inflamed when you're sick. Prostaglandin is the chemical that pain relievers like Tylenol and Advil and NSAIDs try to block. So naturally, if your body is dumping a bunch of prostaglandin, you're going to be super sensitive to pain signals. But prostaglandin and cytokines and histamine are only a few mast cell mediators. Your mast cells store thousands of chemicals, and we only know what 7 of them do. So we're still learning about the myriad effects of "adding too much of 1000 different chemicals" to the "cake" your body is making, if that metaphor makes sense. 😂
I would fully support both a treatment that helped develop the brain more normally & a treatment that helps the brain deal. Sure a lot of autistic people have a great life and found their place in life. But there are many others for whom Autism is very disabling and life can feel/be one big struggle. I would gladly take a Autism equivalent of the Methylphenidate I am talking for my ADHD. They are definitely not a cure all, but they do help me more of the better parts of myself. Just taking the edge off can make a huge difference. Heck, even knowing it is there as a backup might mean a lot. Even an almost magic pill that would actually remove my autism might not change who you are. As it won’t ease the past, it wouldn’t give you (social) skills you never developed nor would it ease skills you did learn. Depending on your autism triggers you might find yourself changing habits. And that special intrest will it be more of a hobby or maybe something you can finally move on away from it. So yes it would be a big change, but your brain might be better than ever to deal with it.
I have a rare brain condition called Septo Optic Dysplasia. This caused me to be born completely blind, and it also caused me to be on the autism spectrum. There is no cure for this, and I don’t want to be changed. The world does have this idea that being blind and autistic is challenging. Yes, there are days where it is. But most of the time it’s not. People tried to take away my accommodations and they tried to prevent me from ever running into things. I was prevented from crying, from stimming, using fidgets and other sensory items, from feeling and touching things as a way of exploring my surroundings, from reacting if someone snuck up on me and grabbed me or stuff like that. I’d say my only challenge in life is CPTSD.
@ I’d be more than happy to answer your question. I use an accessible feature on my I-Phone called Voiceover. It’s basically a screen reader. Wherever I touch on my screen, it speaks whatever I touched. Other times, I use a bluetooth QWERTY keyboard to type out comments, replies, and messages. I also sometimes use voice to text, but I get bored of using that after a short period of time because I get sick of my own voice saying what I want to type.
So here is a important question. Even if they found a solution to "cure" autism. Isn't the brain physically changed? Meaning any cure like this likely isn't going to help anyone already born or at least in adulthood. Like any treatment that doesn't change the physical structure of the brain won't cure anyone above a given age. Am I wrong? Btw on this, I wonder if this doesn't cause autism but is a thing caused by autism. Like since most of us is always stressed out, it sounds like this causes this problem. I think it should be looked into more since it might make quality of life better. But I don't think this is a cause of autism.
Yep, you got it. For a fewe references, look for: ➡ An article by researchers at UCLA, titled "Brain changes in autism are far more sweeping than previously known", from November 2, 2022 which talks about physical changes in brain cells at the genetic and molecular levels. ➡An article at Yale University titled, "A key brain difference linked to autism is found for the first time in living people," from October 15, 2024 where a difference in the number of nerve cell synapses has been seen when comparing brains of autistic people to non-autistic people. ➡ An article in Forbes magazine's website titled, "New autism research finds that autistic brains are differently wired" from October 11, 2024, which discusses research at University of Rochester's Del Monte Institute for Neuroscience which found that autistic brains show a difference in density of neurons.
Yeh, a medical cure wouldn’t make it magically like the adult hasn’t had ASD. Even if it would directly and physically fix the ASD part of the brain, than it still wouldn’t magically fix the rest of the brain nor counter act a lifetime of experiences.
A good opservation! If it hasn't been well tested WHICH causes WHICH, it might just as well be: autism causes more inflammation (and maybe) > more inflammation bad for brain, so autistic symptoms get more severe
@@bluefox5331This would also be a nature vs nurture thing, a pill probably wouldn’t change the nature of our brain structure, but it could help regulate the chemical nature of the our brain. And there is definitely layers of nurturing to prevent an autistic episode as well as nurture triggering one.
Well done, Orion! I’m AuDHD and proud, and the dad to an AuDHD PDAer (I’m prolly PDA as well), and I came across that research while searching journals for something else autism-/ND-related a week or so ago, and was shocked. Shouldn’t be, though. The Autism Industrial Complex is invested in that research, to keep autism pathologized, under the narrative control of the AIC/“autism is a curse/disease” people. They don’t want the autism community to take control of the narrative. But we are! So thanks for doing your part! 🙌
This is so interesting because I’m diagnosed with Mast Cell Activation Syndrome and have for my entire adult life! (Don’t know about younger bc the symptoms started after I pulled an engorged tick out of my head in Lyme central Massachusetts, USA). Autism symptoms were definitely back to before talking! But maybe the tendency was there for the disorder to develop because of being neurodivergent. 🤔 I’ll finish this episode later because I need to go down the rabbit hole reading about the potential connections!
Ooo I didn't know the autism/ unexplained allegrgy connection. That might explain why every day in the office my whole face leaks (eyes run, nose runs, sneeze constantly) when no one else is affected, and antihistamines don't work to stop it.. it's could be asd stress response.. light bulb moment. Guess I better stop going into the office? 😂 On the wishlist..
Be aware that when taking antihistamines Claratyne, Telfast and Zyrtec each have different active ingredients. I have tried them all and only 1 works for me. I have big reactions to too much histamine in my system so taking an antihistamine makes a difference.
I can see how someone can mistakenly think it’s a cure because it could help reduce distress levels by reducing brain inflammation. That means now they can’t see it obviously. But it is actuality a really great idea for anyone to see if looking at mast cells could help thing’s that do distress us. Also if it does help someone, the younger the better because it’s easier to make new pathways to help keep distress levels down. Then people will definitely think it’s a core because they can’t see it anymore. 😂 It’d be like a magic trick.
Also I use neurodivergent because I got my aspergers diagnosis in 2012 but watching your videos have made me realise that I have some symptoms and not others and watching some others have made me realise I had ADHD symptoms and not other. I go with PDA autism but also I still wonder about ADHD. I just call myself neurodivergent to have done with it as I'm definitely different to neurotypicals
I totally understand Orion’s point and I definitely wouldn’t want to be cured out of existence. BUT If I had access to medication that mitigated the parts of autism that make my life hard I think I would take it. It’s true that it can be seen as a way to force me to fit into a neurotypical world. I’d much rather a world that simply accepts and accommodates me so I can live a full and happy life like my neurotypical peers. But until that happens I would take something that allows me to fit in better. I would do this regardless of how dehumanizing it is. Autism or not I still want love and acceptance.
I experience the issue of having allergic reactions and testing negative for said allergens. My body is riddled with inflammation and have been on a long journey to reduce the inflammation, but honestly never thought about my brain being inflamed and how it has affected everything going on with me. I can honestly say that over the last 2 years, emotionally and physically I have felt better, but there are many reasons. I personally think they are just co-occurring not causation. Yes I am autistic, yes I have mental illnesses and physical disabilities and autoimmune disorders....if any of those parts of me are doing well it's going to affect the next part. So if you are physically sick, it's going to affect your autism. If you are well it's going to affect your autism. Everyone experiences good days and bad days based on how something in your body/minds doing, it's not just a ND experience. Remove the inflammation I will still be autistic, have mental illness, and other illnesses...will I feel better,? yes. will life be easier ? Yes. But I was born autistic There is something to be said about how stress affects a person, and to know how that affects a baby before being born.
This is really interesting. I was highly stressed during pregnancy because of severe hyperemesis, or inability to keep food or even water down, so was underweight and spent a lot of time in and out of hospital. My two sisters had no problem with their pregnancies, in fact both had six kids, while I struggled mightily to carry and birth 2. My kids are amazing, but have a lot of gut-brain-allergy like symptoms, including hives, rashes, etc. Life has been a big challenge for me, and for them.
⭐️⭐️⭐️⭐️⭐️ A smart video with detailed information. I loved your counterpoints. Laughed out loud at: 13:57-14:30. I know it wasn't a joke per se, but the profound truth of it hit me funny.
I found Orion to be quite contradictory at that moment you timestamped. If they made a medicine for mast cells, or for making your gut less leaky, or for basically lessening the inflammation in the brain/nervous system, it wouldn't change who you are. It would make sensory issues less of a deal, it wouldn't eliminate them, just make them less severe. If a part of your body is inflamed, would you not want to do something about it? I wouldn't want to make it a personality trait that my skin is inflamed. I would do what I could to treat it so it wouldn't impact my life so negatively all the time. I don't want my brain to be inflamed! That's my whole ME in there! She doesn't want to feel like she needs sunglasses indoors, and she doesn't want to be in a state of burnout regularly for a long time, and she doesn't want to be overwhelmed at the tip of a hat! I would be scared if the was an entire "cure-all" for autism because yeah, I wouldn't be me anymore. But making my brain less inflamed so my sensory problems are milder isn't going to change who I am, in fact, it would free me to be myself again! I'm always so tired and overwhelmed that I don't have the energy to be my fun spunky self anymore. I would love nothing more than a med that could lessen my symptoms so I could be more me again. 😢
yes, i totally agree, and i sympathize with orion FULLY. but he's making it seem like these people have magic pills that cure autism for real. what they are trying to make is something that makes the brain and nervous system less inflamed, meaning the sensory sensitivities are lessened. that isn't going to change who you are as a person, it just means that your misophonia won't be as severe, and your eyes won't hurt in the sun as bad, and you won't need to wear sunglasses indoors as much, and smells won't drive you insane, and you won't be as overwhelmed in busy environments, and touch won't bother you as bad, and you won't have meltdowns as often or be burnt out as often. that's it.
I can believe that autistic people often have strong allergy-like symptoms, and I would welcome information that would help me function better. (Just like me avoiding MSG and artificial sweeteners helps me function better...that is, being able to function at all.) However, with autism still being rather a mystery, and me being who I am, I can't understand why there hasn't been more serious, methodical, widespread research involving thousands if not tens of thousands of people of both sexes, different ages, and from different parts of the world, whether diagnosed or not, who would be put through a battery of social and psychological tests (to identify if they have what we currently consider autistic traits) and then participate in brain scans both to identify any differences in the structure of the brain as well as scans to show which areas of the brain "lit up" in different activities, as well as DNA analysis, a thorough health screening, and social/psychological history. Would this be expensive, yes, but no more so than the current hit-or-miss type of research, some of which isn't even statistically significant OR that focuses only on children. Plus, we have the computers and AI (groan) now to deal with this weight of data. It shouldn't be about "curing" what makes us us, but about putting to bed some of the dangerous and emotionally toxic snake-oil out there (including the idea that autism is caused by demon possession) and giving us a better quality of life in terms of the things that COULD be improved.
When DNA was sequenced they discovered that autistic people have commonalities and was one of the contributing factors for the change to autism spectrum disorder instead of the 4 previous diagnoses. I don't know if brain scans have been done, but I wouldn't be surprised seeing as you can find ones where there is a control against a wide range of mental illnesses to show the differences in the way that the brain responds to stimuli.
I'm proud to be autistic and come from a long line of autistic people, I also have an autistic son. My autisim is who I am and personally I wouldn't change it. Autism pride! 💯
I would look at this a bit more nuanced. I understand the reaction to the decades(and ongoing) of being seen as deficient because of our nature, double empathy problems, being a minority and living in increasing levels of disabling societies. And being bloody misunderstood and often mishelped by any and all of the people we might ask for help until we give up on that route. And when we say what we do need, not being believed because of the reasons above. But at the same time, I see things like correlation with mast cell activation as a way in which we autistic people, seeing as we’re much more sensitive to stressors, are more disabled by our current environment than less sensitive populations. As in: the degradation of healthy gut microbioms due to our current food systems killing off the diversity of microbes, the stress of motherhood, pregnancy and childhood rising due to economic and cultural reasons, just the general loudness of modern society etcetera. There’s not been enough research yet, but I know I’ve had both my sensory sensitivities and my scatteredness worsened in times of hormonal changes or other big stresses. These things influence us disproportionately, and therefore it might very well be extra important to actively counteract these effects to be our sensitive, autistic selves but with higher levels of wellbeing. Does that make sense to anyone else? I mean, getting HRT is hard in the Netherlands, but I really think it would help me get out of autistic burnout quicker because it’s partially caused by perimenopause. And I know I’ve already made major improvements by getting my muscle strength up to scratch with Pilates and my weight/type of food intake and therefore both gut and hormones better with hypnotherapy. Unfortunately increasing life stress has made me relapse on the food front, and it’s a big deal. I can feel the difference daily.
If there are problems going on that can be remedied, that’s great news. My son is on the severe end. I’ve raised him alone for 10 years and if there is something that could give him any measure independence, that would be life changing. As it is, I have to do everything for him. Washing, feeding, everything.
Yeah. I think that's where there's a disconnect around the concept of treatment and/or cure. For people like your son treatment that could help him communicate and do some things for himself would be truly life changing. For someone like me who can communicate and cope fairly well with the world I'm not looking for a cure, but if there was something that could improve my executive functioning I would give it some serious thought. So the needs of autistic people vary significantly. There's no one size fits all approach.
AMAZING video Orion, but I think you got it wrong! That stuff blew my mind last year, but I didn't want to blurt it out to everyone as it was very new and in my support group the focus isn't on medical explanations. For me personally: I do want to reduce my sensory overload and my migraines resulting from sensory sensitivities and allergy-like reactions. To my understanding they are looking for ways to reduce the impact of brain inflammation and not to prevent autism. ASS and ADHD are a small fraction of the symptom bandwidth and by far not the ones with the biggest impact on the people's life. Long Covid and ME/CFS are sharing some characteristics with MCAS as well. So get over the fear that they want to cure autism, please. I have been following Dr Theoharides for a long while, because I actually found out I'm AuDHD through that specific link! I have hypermobility (maybe tryptase related, but hEDS like phenotype) AND mast cell activation syndrome (MCAS self diagnosis backed by my GP, but no specialized diagnostician) and just got my assessment for ADHD (positive) and soon autism (high likelihood). hEDS and MCAS are still pretty difficult to disgnose which doesn't mean they aren't real. As a late-diagnosed individual I know how something invisible can be very real... Managing my MCAS helps me a little with dysregulation, but it's for sure no cure, especially as I was born from a womb that likely had MCAS as well ;) I'll share a link to a video of Dr. Theoharides about MCAS: ruclips.net/video/avuLp-Fw4kM/видео.html For those affected: I can recommend taking Vitamin C, quercetin 500 mg with ketotifen. It's not a game changer, but it helped me over 6 months to regain some bits of stability. Maybe it helps others as well and check out the SIGHI list of low histamine foods if you have issues with allergy-like symptoms or GI stuff: www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf From a place of love and understanding I wish you all happiness and health and that you are content with who you are and there's nothing wrong with being neurodivergent in a world that's just not made by us for us. Take care and please don't hate me for being a little skeptical here regarding Orion's "rant"...
The allergies you talk about seem like histamine intolerance. I’ve got it, so I have to be careful what to eat. It has to do with stamcells. Histamine intolerance gives a lot of totally different «illnesses» from skin problems to gut problems, fatigue, asthma you can even become suixxidal.
You know what i hear with your take on this? You feel so threatened by some who wish to "fix" you so you end up being normal that you are so defensive to the point that you disregard a path that may get rid of some of the conditions that accompany you being autistic. Would you not like to get rid of the most severe aspects that you have to deal with? Would you not like to know how the avoid burdening the future generations with some of these aspects? I personally do value the practices of the medical system when they try to treat things, they showcase short sighted thinking and that is incurring massive damage on the population genetic level, but it is useful in showing what is going on in our biology and it shows pathways that could make things better for future individuals in numbers much greater than exist now. If we expect to survive and thrive we must understand the basic mechanics and how they interact with each other and the environment. I hear too much emotion and very little signs of understanding in this video.
Orion, I've enjoyed the relatable memes you post on RUclips. Figured I should actually watch your content. As someone who is autistic, I understand the thought process that "If I weren't autistic, I wouldn't be me." However, this doesn't change that autism is a disorder and my life would be significantly improved without it. One of the saddest things for me is when I hear fellow autists say "There's nothing wrong with us; it's society that needs to change." Human behavior cannot be socially engineered. It's a waste of time and effort. Simultaneously, I don't appreciate people suggesting I cannot change on an individual level, which is something "accept us" autists seem ideologically opposed to. Nothing has made me feel more alone than the feeling that "my kind" is obsessed with something I don't believe in and would sooner mock me for wanting more out of life.
I don’t want to be cured at all even if there was way to totally reverse autism I wouldn’t take it I like being autistic. I don’t want to be like everyone else I thrive off being different
How could the research help? It could stop policies which stress out pregnant women, policies which REQUIRE them WORK while pregnant, constantly scrambling to care for children hold down a job manage a house AND be healthy to grow the fetus inside... All at once... in order to qualify for their medical insurance or state Medicaid.
Leaky gut? Isn't that another name for IBS? They can identify IBS only by symptoms, but unlike IBD or Chrons disease, it doesn't leave a physical mark on the intestines. If there is a connection between IBS and autism, that would really be something. I have always heard that my Grave's disease and my IBS were connected, but I never thought of connecting my IBS and my autism.
I thought it was too, my understanding for helping IBS is working out what foods your gut is reacting to and not eating them. If you have food intolerances they usually present digestively, work out what they are, don't ingest them and you help your gut. I eat a low FODMAP diet (each person it ends up individualised and when you are eating that simply then you can tell when you are reacting to something) and from that have added more things to the list that I react to. I have had people tell me that it is only supposed to be short term but since eating like this I am not anaemic for the first time in my life and my cholesterol and sugar levels are much better too. So sorry not sorry not going to go around introducing things to see if I can expand my diet a bit especially as for me I was originally told that I could have eggs as a sometimes food, I over did it but it took months for that reaction to set in, now eggs are something that I can only eat when they are fully baked through in a cake.
Great information provided in this video, but can’t say I agree with the this is the way I am bit. Personally if there’s a way to reduce anxiety, improve social interactions & rid myself of the stress hypersensitivity causes i’d take advantage. Been experimenting with heavy bitter herb consumption just recently and seeing improvements, then this video comes out. Synchronicity is amazing
The thing is that if you didn't have those then based on the deficit model you wouldn't qualify for an autism diagnosis in the first place so therefore, they have cured you.
I believe I had a different reaction to this than most viewers. I’m Autistic as are my kids. The oldest is not only Autistic, but also has hypermobile type Ehlers-Danlos Syndrome and MCAS. And yes… when I was pregnant with her, I experienced panic and anxiety starting right after the ultrasound. Best guess is that it finally hit home that yes, I really was gonna have a baby and boom, panic. Sure, I wanted to have a baby, but reality still hadn’t settled in. The hospital system I was in was hot trash and is fortunately no longer in operation, They sent me to a therapist whose approach was to let me vent for 45 minutes and then recommend that I buy “Don’t Sweat the Small Stuff (And It’s All Small Stuff)” because clearly the problem was that I’m just too hysterical over nothing… right? Only he did it at every session as though he forgot he mentioned it before. So here we are, 27 years later, and the MCAS… whether or not my panic disorder caused it, much less her Autism… is keeping her a veritable prisoner in our home. Because, y’see, her digestive system will periodically purge itself. Both ways. And it hurts. And she’s afraid to go far from home, because she doesn’t have much warning… just enough to run to the bathroom. We can’t figure out all the trigger foods,because it isn’t necessarily an immediate reaction. It builds up in her system. We need to get her to another immunologist, but have had a challenging time getting it scheduled due to her stress levels and uncertain digestion and sleep schedule. She sometimes sleeps far longer in one go than she should be able to at her age. So this research is of interest to me, if it means that we come closer to finding a more effective treatment. I want her to have her life. Autism isn’t what’s preventing that. There’s a condition here very much in need of a cure, and it’s MCAS. In fact, that and other digestive disorders… that’s where that research money needs to go. Ask anyone whose digestive health limits their activities. THEY want a cure. They should have one. Breathing disorders, hormonal imbalances, heart health, liver function, insulin resistance, reproductive struggles… so many people in need of medical miracles, and they’re trying to cure us! Or prevent us.
I wish you all the best on this harsh journey. But I want to emphasize that the stress during pregnancy idea is not a general understanding but just another possibility. Actually this includes the "stress" of fighting a virus while you are pregnant. With MCAS then also the barrier in the placenta is leaky and virus toxins can enter into the environment of the developing embryo. This is to my understanding a far more likely cause and I want to take some of the mental burden off you. You seem to feel very helpless and responsible for your child's struggle. Feel a hug from afar and you have been heard. May the universe or whatever force there might be help you to get through this!
I had an allergy test and was told I have no allergies, but I have had rashes and feeling like my whole body needs to sneeze. I have been diagnosed with sinusitis. I suspected I may have MCAS. My mom being stressed during pregnancy? Highly likely. Acceptance. Yes that is what I want and need. I have a care coordination person who has been just wonderful and I asked her how did she learn how to treat me properly, like, did you learn about autism somewhere that made you accepting? And she told me she accepts people as they are... She didnt learn something specific about autism!!! she just had acceptance! That's what I need from people! Acceptance!
I’m a late diagnosed autistic adult. I figured out I was autistic during severe burnout. I also developed allergies to things I wasn’t previously allergic to during this time, and developed more severe reactions to things I was mildly allergic to prior to burnout. I have been prescribed Ketotifen for MCAS, or mast cell activation syndrome. It has helped me not only with my allergies, but overall improved my energy levels, mood, and sensory sensitivities. I’m not saying I agree with the research you discussed, just an interesting anecdotal observation. Allegra, an OTC allergy medication, as well as Pepcid, also helped me, although not nearly as much as the Ketotifen has. I still haven’t watched the Cameo you made me because I genuinely forgot about it until now. Did I mention I’m also ADHD? 😅 Edited to add: I don’t believe in “curing” autism or inflammation causing it. I was just explaining the interesting link between mast cells and burnout for me.
Hi that is interesting. Good response and thoughts. I'm not sure what came first, the triggered mast cells or the autism stress. Interesting about the gut brain connection and the stress in pregnancy connection. Of course like all research we must look at the limitations in studies. I actually am a doctor lol but not an expert on this topic. I don't want a cure for autism. The eugenics behind it and "treatments" are terrible. I've been a participant in studies about autism because i want more understanding and help for autistic people. But it is a minefield choosing research groups that don't have a cure as either their main purpose or as a side quest of theirs 😅 Btw it is pronounced mitochondrial with a K sound and microglia is pronounced microGLEEah 😂
A beautiful working of the inner workings of my body it’s developing as listening to this because I never stopped to think about both at the same times. 😮 This is awesome! Guess which of my brothers isn’t autistic? The one that’s the oldest of the four kids! Everyone else only has more symptoms according to order.
I would ABSOLUTELY take a pill if it reduced sensory sensitivities so beeping cash registers didn’t sound like somebody was driving a screwdriver into my brain or picking at my skin until it bleeds, but I wouldn’t take it if it resulted in me not having my autistic way of thinking.
Adderal doesn’t “cure” my ADHD, but it absolutely helps me interact in the world better. Would I prefer a world where I could just use my brain the way it wants to be used? Of course. But that’s not the world we live in, and it’s going to get worse before it gets better.
YES! I’d love a pill that would give me a couple of hours of full executive function, reduced sensory sensitivities and reduced perfectionism to make things like getting into work easier.
But, assuming I am autistic, (no formal diagnosis), I would not want a cure for autism because then I would cease to be me.
I take so many Mast Cell blockers and it does NOTHING AT ALL to calm down my autism stuff. Nothing. If anything it makes it worse because of side effects-the only thing would be they help me sleep cause they're allergy meds. It's frustrating to hear this as an autistic patient who has mast cell activation syndrome. I wish they'd stop trying to cure us.
Yes but do you only want to use your brain that way because you live in a NT world? Pills are just another form of masking. They're great for fitting into our current world but it's becoming more and more clear that this world is broken. "It is no measure of health to be well adjusted to a profoundly sick society."
@@resourcedragon I feel the same way.
Yes, i agree so much with this comment!
The issue here is that there is a group of people who see Autism as a problem but spend their resources on pathologising it rather than working to understand someone else's life and how it migjt work for them.
Selling "cure" make line go up. 📈
Yet more proof that society doesn't care about us; they just want to be rid of us. They want autistic people to assimilate so they don't have to deal with us. They don't understand and they have no desire to understand. They just want us out of the way.
@@DamienClarke2438 Exactly.
I want things to migjt for me 😂 what ever that is sounds fun
People do not need to be identical cookie cutter human clones, however it would be wonderful if some aspects of autism could be cured or at least lessened without drugs. I am thinking of things such as anxiety, insomnia, over sensitivity to textures, light and sound, inability to focus and difficulty with social interactions. That being said, I recognize that everyone approaches life with a different heart and brain and I would not trade my family and friends on the spectrum for anyone in the world.
I don't want a cure, I want understanding and acceptance. I am not broken , my autism makes me who I am! Without my autism I don't know myself.😢
"I don't want (...) understanding and acceptance."
Well, what if the latter isn't going to come to fruition?
@@knrdvmmlbkknwell first off, you shortened that quote in a way that completely botched it's meaning. Second, well if it doesn't come to fruition, we just keep living the way that we have.
@@knrdvmmlbkkn
I think there are hundreds millions of extremely neurotypical people who are heavily marginalized people- with NO ‘cure’ for the EXTERNAL stigma and hate they face.
So- ‘what if acceptance never happens’?
Yeah- what-if. You don’t see people doing all sorts of identity erasure on themselves- just to accommodate bigotry.
It's interesting. I understand your point, but if autism is a disorder, it means that our brain developed weirdly to the point that we feel physical pain from sounds, lights and so. I don't believe that this is something expected, and definitely in a landscape where we don't have the cities and are up to the dangerous of living by ourselves in the nature, this would mean death in many situations. This means we should not exist? No, I would like to be born with autism? If I had a saying, definitely no. I find it dangerous to try to paint all our suffering as "normal". Understanding and acceptance help? It does. Will it make my suffering, pain, struggles, burnout and etc go away? It won't.
I'd rather have never born at all to keep living the way I do. Does this means I'm depressed and want to unalive? No. This is just my reality, no sugar coating will make it different. I try my best to keep myself healthy and still living, because I exist, it's not optional. I'm here already, even tho my autism made me almost die countless time in the past 30 years, my body seems to insist I live, so I live.
@hellequinm I never said that I wouldn't want to be born not autistic What I said (more like what I meant) was it has been a part of my life for my whole life, and that's all I know, now suddenly they're trying to "cure us." I dont know how I feel about being told I am not good enough by just being me and need drugs to be like everyone else.
If that makes sense. Sorry not best with words. ^^;
I was like, "MASKED CELLS"!??! Oh man, we're on the cellular level now! 😂😂
Mast Cells
@@brybaby89 🤣
That was funny asf 😂
@@brybaby89 😅
but how to use the three seashells that she sells?
Just got a late diagnosis of ASD. Throughout my life i tried to be "normal" and got board within years of acting nurotypical. Since I did not have a diagnosis I served a full career in the Coast Guard, became a therapeutic farrier, flexion therapist, 30k hours in aviation, 5k hours as a bush pilot, and became an executive Chef. Maybe autistic are not broken, just held back and not given the chance to actually live. My life was full of nothing but abuse, beatings, assaults, and retaliation. As I'm processing my late diagnosis (3 weeks ago) it all makes since. But the stories and education of being forced to be nurotypical has gotten me in allot of trouble even though I did nothing wrong, the bullies just always found me. At one point in the service I was aggressively frisked every day going to work and had service weapons shoved so far under my rib cage the barrel touched my diaphragm and had a glock on my scull. This happened for over 2 years by the senior security forces. As I process my life and find my true identity maybe I'll be able to tell the stories, started recording the abuse in 2011, so there is alot of evidence of how autistic get treated. I was even told after requesting assistance "Stephen Hawking figured it out and I should too" needless to say, I'm figuring it out and justice slumbers.
You aren't alone. Your story sounds so similar to mine. I self-diagnosed about 2 years ago. Things were rough at first, as I had trouble making people believe me. So I don't try any more, especially with doctors. I found time spent with good family and quality friends was helpful. A wonderful therapist guided me to use my own gifts to overcome the worst of past abuse and, since that point, my life has flourished! I hope you do too!
@JB-pk3bz I have adapted to try to look at the positive outcome, I always make it through stronger, though this time it's rough. The VA just sent me to Sierra Tuscon for complex Trauma and medical care for a broken back, wrist, pelvis and knee. Sierra Tucson is a drug rehab that made 3,600 a day and did nothing but force me to do nurotypical drug rehab classes for 30 days, I've never even used street drugs, but they promised health care in a day or so every day. I just got back to alaska last week worse off then when I left. My brain has never felt so stressed and it completely shut down the past 5 weeks, it's just starting to come back online. I saw a green flash and heard/felt an electrical pop 2 nights ago in my brain as if synapsis had made contact as my brain is recovering. That was a rough experience.
@@LivingAlaska I wish I could talk more. But in real time, a phone call informed my loved one is admitted to the ER. Gotta go. LivingAlaska, God bless you and keep doing what you're doing. Your way.
your accomplishments are amazing !! I was proud of myself just being a cashier while autistic, then I became a mortician. WE are so God damn capable 🙌 now im gonna be a barista just because I CAN
I felt your story so deeply, as I'm also processing my late diagnosis (last year in May). I was bullied since the kindergarten (even by teachers), and I'm still revisiting my history with a tinge of bitterness. Like you, I also went through a long career, became a doctor, then a researcher, and at the peak of my "success", a violent and deep burnout (which now I know as an autistic burnout) hit me like a truck and I'm still trying to rebuild the pieces.
I wish you a successful path to your new self-discovery and healing from the wounds of the past. People tend to think we don't have feelings, maybe so they can't feel guilty for hurting us.
You said exactly what I was thinking. Curing autism would be like deleting who I am.
Would curing diabetes delete the diabetic?
@@josephwright5921"Would curing diabetes delete the diabetic?"
Or if a broken bone heals... or if I wear glasses to get headaches less often...
"Curing autism would (...) who I am."
What would the downside(s) of that be?
@@josephwright5921 Say what there is a big difference between having a pancreas that doesn't work and reprogramming someone's brain. There is a reason that the brain is one organ that they can't transplant as the professionals agree that it would fundamentally change who the person is.
@@josephwright5921 diabetes does not affect how you perceive the world and how your brain opetares. autism does.
if the intense life long passion for art (and nature, but that intensified later..) is part of my autism, taking that away would, to me, feel like someone ripped the essence of life away from me. how about just a full on lobotomy so i can be a mindless robot essily put to work instead if we're going that way already, hm..? (do you get my sarcasm..)
OMG Orion! I am saving this video to present during my grievance hearing! I am in the process of grieving this very point of neurotypical people telling me what's best for me or what they believe I can handle. My employer has refused to accommodate the most important of my needs at work, saying that I will be able to work under the conditions THEY set out. In some ways I appreciate the fairly new found respect of neurodiversity but in other ways it seems to have opened the door for even more misunderstanding of those who do have different brains. Who the hell do they think they are, telling me what I can handle?! People who have never met me, and people who have only known me a short time, think they know what my limitations are.... Me..... who I've known and lived with my entire life.
Get a lawyer. Show them your diagnosis paperwork. Get a note from one of your doctors.
That’s against the Americans with Disabilities Act in the US. There have to be laws in other countries as well.
Cure: “Be like us.” Then I cease to be me. Accommodate: “Allow me to be me.” We both benefit. The second option takes bravery. The first does not.
The firsf option also makes a few normies an enormous fortune. Wait until we're all issued our mandatory anti-autism treatment. 💉
@@Arnie-uc1jv 💜💜💜
I was placed on meds for bipolar disorder (a misdiagnosis) when I was 5 years old. The side effects along with traumas of being held down by my "family" as they force you to take ground up lithium pills that was mixed into my apple sauce. Tasted extremely bad, and messed with my ability to feel anything. I will never let someone try to chemically change me in that way again. I have lost a lot of trust with the psychiatric system since then due to the prescriptions they prescribed to me. I was completely and utterly misunderstood but they kept throwing drugs that messed with the one thing that made me, me. They were messing with my brain! If that wasn't a boundry being crossed, I don't know what the #@$% is.
@@PlagueGuy So sorry you endured that! It sounds like a lot of boundaries were crossed.
@ Thank you, that actually means a lot.
I think that in future, MCAS is going to actually be the formal diagnosis, and all these other conditions (ASD, ADHD, HSP, etc) will be described as symptoms of MCAS. There's way too much overlap to be coincidence. That doesn't mean we should be looking at this information as a cure, but rather a way to lessen the physical and psychological toll having these conditions has on a person's quality of life. Just a thought 😊
In my opinion this could be indeed for some cases related. I personally think there are multiple genetic combinations that can result in this neurotype. If we find some treatment for the sensory processing issues and the brain being clogged up by just too much information causing overload and meltdowns... This is worth studying and I cannot quite understand why Orion is so against it.
@@laura5425 He is against it because any time they are looking at things like this it is phrased as a potential cure. It isn't promoted as a way to reduce symptoms and if they did then it would be so that they don't have to provide services because we would be more 'normal'.
It also highlights that people doing this kind of research continually ignore that there is a strong hereditary factor for autism/ADHD.
correct
@@amandamandamands That's a fair critique, but I think the issue here is validation of the research is different than what doing the research is for. I don't think you can imply they're suggesting that changing the mitochondria reaction is going to change your actual brain structure much.
@ OK but the issue is that currently diagnosis is based on the deficit model, and if you are trying to get a late diagnosis and managed to find ways to do the things no matter how maladaptive they are then you don't qualify for diagnosis (people get turned away because their social skills are too good, they have friends etc). Reduce the stimulation that makes us obvious to the outside world, we can cope better and so are more able to do the things, therefore don't qualify for a diagnosis anymore.
They have done studies where they do early interventions with toddlers rather than giving a diagnosis first, the study then said that half of those children no longer met the criteria for an autism diagnosis. How many of them will later on when demands become too much who knows but they don't qualify right now anymore because they are being brought up in a supportive environment. What you are talking about is giving our brain a supportive environment and then we no longer meet the current criteria for being diagnosed. Sorry but in real terms that means eugenics and they can say that autistic people no longer exist.
G'day Orion, it''s that retired biochemist guy again. Two thumbs up for this one. Don't worry about the pronunciation. You got mitochondria right on the second try, and some of the words after that I don't know! 😀 You've highlighted a lot of the false assumptions they started with, which kind of invalidate their conclusions. There's an awful lot of 'might' and 'could' in these findings, but seemingly little in the way of beneficial facts for us. There's a place for papers like this in alerting the scientific community to an area for further research (which would be why it was published), but nothing really we can take on board. BTW, Imagine the furore if some of us autistic scientists researched a cure for being neurotypical! 😳
@@peterwilding1203 They wild need a large scale longitudinal study. These small studies that get at hyped --in physical and psychological medicine--irritate the hell out of me. Like, come talk to me when you've looked at 10,000-20,000 people.
(I wanted to be a psychologist when I grew up, and I like science and especially medicine!)
I actually think you're a bit off with your opinions on this one, Orion. No hate at all, no animosity, just a disagreement. If there were either natural remedies or some meds that could lessen some of my symptoms, I would love nothing more than to take them! I take adderall to supplement the serotonin levels in my brain and it lessens the severity of my emotions to something much more manageable, it often helps me a little with executive dysfunction, and it makes my thoughts much less scattered so I can focus a little better. It doesn't cure me, but it's a HUGE crutch that I wouldn't want to live without.
It would be the same for autism, Orion. If there was some autism equivalent to adderall+adhd, and I could go outside and the sun doesn't hurt me as bad because my pupils close faster, mouth sounds don't anger me as much, I can hear what people are saying in noisy environments just a little better, smells don't drive me insane, and I wouldn't be as adverse to touch as I am now..... I would do it in a heart beat!
It wouldn't change who I am at ALL. It would simply make life easier. It wouldn't have an impact on social things besides being able to tolerate social environments better. I wouldn't be so overwhelmed every day. I wouldn't get burnt out as often, or as long. It's obvious idea to me that autism meds/supplements would be good, and wouldn't be a cure at all. Don't you want to lessen the negative symptoms a little? It wouldn't change you. It would simply allow you to be more yourself because you would be struggling and suffering less.
Your identity of yourself and your autistic identity do not lie within how much you suffer. They are branding it as a "cure" in the same way that dandruff shampoo "cures" dandruff, but it doesn't really. Because if you use it and then stop, the dandruff comes back. Taking meds to "cure" -- read: alleviate -- symptoms would be a great thing! 13:50 You say there are no symptoms, but Orion, you KNOW there are. They can do studies on this more and if mast cells are an issue they can make medicine to help with that, then in return we would have less brain inflammation.
Van Gogh suffered greatly from his mental health disorders. He made his best work when he was HEALTHY, not when he was having breakdowns and episodes. He was this amazing person when he wasn't suffering from the symptoms of his disorders. This is how I am, too. And I'm sure it's how most, if not every person is. When I am suffering from my adhd and autism symptoms, I cannot function the way I want to. When I am properly medicated and eating and sleeping and exercising well, I do so much better. I am more artistic too, and creative. I draw and crochet. I haven't drawn anything in over a year because I've been dealing with so much.
I hope maybe this can kinda help you see what I mean. If we took autism meds for symptoms, we wouldn't stop being autistic because it's obviously not a cure. I am and will always be adhd no matter the adderall or coping strategies and life changes to accommodate the adhd. I will always be autistic even if my sensory needs become manageable to the point where I feel less disabled by life and living. The point of glasses is to correct vision impairments and increase quality of life, so one may see correctly and be more independent and happier. The point of meds for disorders is to correct brain chemistry impairments and increase quality of life, so one may function more correctly and be more independent and happier.
You say "The concept of treatment is problematic." And that just does not make any sense at all, Orion. If someone cannot walk they receive a wheelchair. If someone cannot see they get glasses or a cane and maybe a seeing-eye dog. If someone is sick with a cold, they get medicine to treat it. If someone has an injury, they receive treatment. These are not problematic things. Autism is a disability, why would you stop people from wanting to lessen the severity of the cons that come with it? There are so many negative symptoms with autism, and you contradict yourself multiple times by saying you want help, you want your life to be easier, but when that help to make your life easier comes in the form of a medicine that lessens the inflammation of your brain, you say no and that it is problematic??
The brain is a very serious area to be inflamed, as well as the spine. If there were medicine to make my gut less "leaky" and stop my sensitive brain and spine to not be as inflamed, why would I not want that? Who wants to have an inflamed brain? You say you're scared of who you'll be if you aren't suffering from sensory issues, why are you convinced that who you are is someone who has to suffer, or else you aren't you? Why are you convinced that living in a state of overwhelm is who you are as a person, and if you stop being overwhelmed regularly, that you will be a different person? All you will be is healthier and happier. Your personality won't change.
So we’ll said! I was going to comment trying to make the same point, but you did it much better! I can easily imagine a life where I’m struggling less with dis-regulation and anxiety, but still me or even more me than I am when I can barely function or handle a simple social interaction.
Great way to put it! I want to be myself and not change, but I also don’t want to suffer endlessly. If something helps me function better without changing me, then I’ll take it everyday of the week.
@ Thank you! I hoped I wasn't rambling too much, but made my point well. Thanks for letting me know I made sense LOL!
I had said to someone else in the comments that my brain being inflamed is bad! That's my ME in there! She wants to feel better! I would be able to be more myself if I wasn't tired, and overwhelmed, and burnt out all the damn time. My mom is sad and she almost cried one day because I used to be this fun excited person and now it's all just avoiding things because I'm overwhelmed and exhausted. I notice myself not saying something funny like I used to because I'm too tired. It's sad. I want to be myself again without all the sensory problems blocking me.
Well said! I agree with you. I would rather not have to rely on medications, but that’s a moot point. Your comment spoke directly to my internalized stigma regarding psychiatric medications. Now that I’ve found a medication that at least helps decently with my symptoms, I honestly would hate to go back to how I used to feel. I went through so many rollercoasters of intense emotions and intrusive thoughts.
@@haleys4899 I totally get you becasue I had the same story - I was against meds and then came to a point it was the last resort to keep me alive and helped me to get back to being healthy and now I was even able to get off them because as my psychiatrist said - I don’t need them anymore.
Eating whole foods and avoiding processed and ultra processed foods has actually helped me function better. I do a ketogenic diet, which is little to no sugar/carbs and instead get my energy from eating saturated fats like butter, tallow, lard and sometimes heavy cream. It’s not that it “cures” anything, but if it helps my working memory, concentration and energy (all this made me function a lot better, it took two weeks of adaptation personally and I have done it since 2018) I’ll take it everyday of the week! Not a “cure”, still being my autistic myself, but it helped me greatly.
Be careful with a diet really high in animal products. There was an article about someone who was on the carnivore diet and his cholesterol level was so high that it saw lipids (cholesterol) oozing from his blood vessels when he showed up at a Tampa hospital recently. He experienced painless, yellow eruptions on the palms of his hands, soles of his feet and elbows for three weeks. That was after being on the diet for 8 months.
Be careful with comments that emphasize one case gone wrong over thousands that have had miraculous improvements in their health. Because of comments like these, people that have been chronically ill with no answers from the medical establishment delay trying a diet that could make them improve their lives and even get their illnesses into remission.
I have a colleague who due to allergies, etc, cannot eat fruit or vegetables so he's essentially on an all meat and fat diet with a few supplements. It's not healthy in the long run but keeps him alive and functioning.
Me too.
@@amandamandamands he was eating cheese! To the extreme... not relevant.
My kids and I all have MCAS and Autism. We are always navigating and regulating. We are grateful we know what's going on so we can ride the waves of our bodies and brains. Never a dull moment.
So does my daughter. The MCAS is far more limiting than the Autism. We’re still trying to find her a treatment that works for it.
@BeeWhistler I'm sorry
@@BeeWhistler I'm sure, you know all that already, but I still want to share some stuff that helped me:
- SIGHI low histamine diet
- loratadine and ketotifen as baseline antihistamines with little side effects
- the occasional ibuprofen to block prostaglandine (makes these migraine headaches)
- regular vitamin C
- at least 500 mg quercetin daily
- some people benefit from daosin, I don't
Maybe someone else can find the building blocks to get to a better level of health and life quality... All the best to you and your daughter!
Same here. And ADHD in the mix haha.
I’d love a cure. Maybe I’m not seeing my disregulation, lack of executive function and inability to process social interactions, as inexorably bound up with my personality and the things I enjoy about being me (including intense interest in subjects, tendency to hyper focus, and creativity). Maybe they are closer linked than I realize, but I can easily imagine having the good without so many struggles and I’d love that 🤷♀️.
Same! I see so many autistic people saying they would never want to be ''normal'' and autism is who they are and they don't want to change that. as a late diagnosed autistic, please make me ''normal''. I stuggle so much with daily life because of autism that I cant do the things I love either.
@@crocodileSweetPicklesThe thing is, being "normal" is an illusion. Nobody is normal, not the Neurotypicals, nobody. They are just one way of being, the same way you are. Neurotypicals are highly dysfunctional people, it's just they happen to be the majority, which makes it seem like you're the one with the problem. You aren't. If you can quantity it like that, your outlook towards yourself might change and you can be a lot less hard on yourself. Focus on what good things you have, the same way they do. You have the right to take up as much space on this Earth as the Neurotypicals do!!
@@crocodileSweetPickles I feel you so much. My executive dysfunction is driving me nuts and my ADHD wants me to explore the world... which I FUCKING CAN'T because of my autism... Apologies for swearing, but I am still in the grieving phase...
@@crocodileSweetPickles"I see so (...) I love either."
That hit home.
OK but that is like saying that people in a wheelchair should all be cured because life is so much easier if we don't have to worry about installing ramps and other things to be disability compliant. The actual issue is that being neurotypical is considered the standard and so anything else isn't accommodated for. It is the same way that the world is set up for the extroverts and it is considered that there is something wrong with introverts because they can't do all the things.
I think we will learn there is a subgroup of autistic people who fall in the POTS/EDS/MCAS/AuDHD who do benefit from treating their mast cells, but it won't make us less autistic, but hopefully it will mean less burnout and brain fog. Those of us in this overlap of diagnoses know how painfully exhausting life is, especially for those of us who have to maintain a job for health care.
Second this!
Agreed! Treating the POTS/EDS/MCAS/ME/IBS would be great. But it isn't Autism that they're treating by treating the neuro-inflamation. How I see it is these conditions co- occur and they may make some of our "Autistic symptoms" worse but doesn't everyone have trouble thinking and being social when they're sick or in pain. So getting rid of the things that make our lives worse is great but stop selling it as a "cure" for autism.
Me! That's me! 😅
I started eating gluten free to treat a different condition, but I've found that I have less brain fog and better emotional control when I'm off gluten. Still absolutely AuDHD, but not flying apart at the seams
Is not about "curing" it's about reducing symptoms and improving quality of life. Non verbal ASD have become verbal by reducing inflammation. My stress and anxiety greatly improved when I reduced my inflammation. For reference I was also born premature.
Me too!
How’d you do it?
Thank you for raising your voice. I think he got really emotionally triggered here, which is a little sad, as the topic is pretty cool
"My stress and (...) reduced my inflammation."
So how did you reduce that inflammation?
"My stress and (...) reduced my inflammation."
How did you reduce that inflammation?
I'm crying. I'm an autistic person who experiences anxiety at the highest degree to the point where I have no quality of life at all, born 3 months premature, and have been getting random allergic reactions I can't pinpoint for years.
Similar experience here ...
I don't want to be fully cured. If there was something to improve social functioning that left everything else the same, I'd be happy.
As an autistic woman I'm taking meds to function. I'd rather have a cure because i don't believe it will change my personality but will help me navigate this neurotypical world. I also believe there should be more support, understanding and awareness from the environment. One thing doesn't exclude the other imo. These two things should go hand in hand.
Btw i just got diagnosed at the age of 45 because of my peri menopauze symptoms (one of them being activated mast cell symptoms). With this brainfog i can't even mask anymore. One of the reasons so many autistic woman get diagnosed during this period of their lives i read. Sensory issues have worsened, this list goes on. So i can see why there's a link between autism and mast cells in that regard.
"As an autistic woman I'm taking meds to function."
Which medications?
When I had brain fog it was because I was in burnout, You can't medicate your way out of that, you just have to simplify your life and give yourself self care. It took me a good 5 years to be over the worst of it and I am now aware of warning signs that I am becoming overdone so that I can step back from the things.
@ dexamfetamine and something to help my anxiety and depression.
@ I am not in the same situation. It's not burn out, i've had this since I can remember but it worsened since peri menopauze. There are several studies that link brainfog to this especially in neurodivers woman.
For anyone interested, you might want to check out the new documentary about breaking the silence about menopauze. It's called "The M factor". This theme was a huge eye opener for me.
I’ve recently requested my doctor check me out for this. I’ve haven’t heard back from my doctor about this. But I’m going to push her harder for the best test to see if this could be why I have year around allergies and the many more symptoms I experience that match this syndrome. Thank you again!😊
I don't think these things can "cure" autism, but I have certainly noticed in myslef that they make my symptoms much worse. I am currently struggling with too much histamine circulating and cant seem to figure put how to get it under control. Quitting premade and ultraprocessed foods has helped, and that leads me to think that modern environments with all these chemicals our bodies havent evolved to handle may be making symptoms worse for everyone.
Additionally the body releases histamine when it's stressed, any kind of stress, and autism sypmtoms are exacerbated by stress.
I agree, I quit processed foods too. It’s not wrong to try to make life better, or encourage or give suggestions. Helped me a lot.
Honestly I take an antihistamine every day since covid started. I used to only take them when my hay fever was playing up but didn't want to take the chance of having a snotty day and everyone thinking that I was contagious.
You just need to find the one that works for you as Claratyne, Telfast and Zyrtec all have different active ingredients (out of those only Claratyne works for me)
@amandamandamands I take hydroxyzine and trazadone and a beta blocker to sleep and there are nights when that doesnt even work. I've been hearing that antihistamines can cause more histamine to be released since it only blocks receptors, but I cant seem to find any actual research reporting that, but it makes me wary anyway
Try the SIGHI low histamine diet. Sucks, I know, but it helped me a lot although it makes life much more difficult... Have posted some more info here on meds and supplements that are evidence based and help a little as well
I only eat beef and soluble fiber. It has greatly improved my life and health. I cut out everything bad lol
There is so much overlap with ME and long covid findings here. Fascinating.
Great job explaining things. One problem with this topic is that people tend to gloss over things which they believe are self evident. I will always recommend this channel to people who are trying to catch up.
Most autistic people do not want to be “cured” but I suspect a lot of neurotypical people think it would be a good idea to “cure” autism.
Most don't? Could you please cite your source I'm curious.
I think there is a group of us very able autistic people who are dominating the conversation, mean while there are plenty of autistic people who can’t deal with social media (or other people in general) or those autistic people that can’t comprehend and/or communicate well enough to be in this discussion.
Taking a cure means change and change is generally not something us autistic people are fond of/great at.
If someone has found themselves a place that works well enough, so now might be a bad time to take the risk. While others find themselves in a situation already requiring some kinda change and might gladly take the aids they can.
I see several comments about not wanting it, because they don’t know who they are without it.
I sooner think people will be disappointed with how little a cure affected their already adult life/brain, than people actually having to more fully figure out their lives/identities.
And those people that would really figure themselves out are those who were severely limited/disabled by specifically their Autism. And those people are the people underrepresented in places like this.
I take Ritalin for my ADHD, it just help my brain doing it’s thing better. It doesn’t undo who I have become due to decades of not taking it.
I am ASD 2/3 and doing a Doctorate in lived experience of disability as well as studying to work as a music therapist. This conversation made me realize how fucking absolutely adamant I am about Neurodiversity Affirming. I am intimately aware with many of our struggles and totally uphold the choice for people with Autism to make their own decisions as to whether or not external interventions are right for them. My personal journey has been one of gradual self understanding, self compassion, self acceptance and the premise of "curing" autism is fucking disgusting to me. THere's nothing wrong with us! I'm a queer person of colour and I would feel as horrified as I would with regard to conversion therapy/camps for LGBTQ+ stuff or... Actual extreme racism, eugenics etc.
Nah. My people don't have a problem. And it's not on us to have to change ourselves to fit with someone else's oppressive, dominant world view or way of being. --We can't do that and we shouldn't have to. We've tried and it fucking killed many of us.
Love to Orion for facilitating a conversation. Love to the community for helping elucidate and simply the values I am still discovering as I progress on my journey through life and who I want to and must be in the world we share.
Love you all. Have a wonderful week!
"My personal journey (...) disgusting to me."
Good for you, I suppose. But _others_ may want and need it.
"THere's nothing wrong with us!"
No, apparently _something._
Sorry but I don’t agree at all, especially calling it “disgusting”. It’s a privileged level 1 perspective to only view autism as a different neurotype, and even then many people who are “high functioning” would rather not have it. Autism is by definition a disability. We should of course prioritize the acceptance of autistic people, and only viewing us as our disability is also wrong like so many NT do. There is a middle ground between viewing us as diseased freaks and pretending that autism is completely normal and just a different neurotype. I’m pretty sure a lot of autistic people would benefit from treatments that help with sensory sensitivity, ability to speak, prevention of meltdowns, issues with connective disorders and depth perception etc. Also comparing a disability to race and sexuality doesn’t make sense. Gay people suffer from homophobia and living in a heteronormative society not being gay itself. Same with being a racial minority. I am a black autistic woman, and there is nothing wrong with being black. Being white would make my life easier but that’s only because of racism. Autistic people suffer from both ableism and autism itself. Even in an ideal world, autism would still be a disability. So yeah.
I see I've met the famed RUclips comments section. Noted. I'll save the discourse for more appropriate environments in future. Thanks for the lesson.
@@jbenoit1962 don't mind the bullies on here, no one is here for them, they're here for stuff like what you wrote
"They wish to cure us."
"But I say to you, we are the cure!"
I am properly diagnosed with ASD. I was in a car accident and was prescribed a strong anti-inflammatory. It made my brain feel crystal clear and I was suddenly happier and more productive. It was nothing short of miraculous. This is just anecdotal but I have personally been researching what I can do to reduce inflammation. I wouldn't call it a cure but it does make me feel better which is profound.
What was the medication? You can reduce inflammation in the body by taking an allergy pill every day, such as a zurtech.Or a claritin and yes you could take them for a long period of time. You can also Go on a low histamine diet.
@FlaGrown1955 Diclofenac is the one that gave the most drastic effects. It's immediately. I have tried all sorts of other things and nothing compares.
Exactly with the correlation and causation. People with autism are more likely to also have EDS, and vice-versa, which, is also related to genetics. With no cure. People with EDS are more likely to have POTS and MCAS (mast cell activation syndrome), which are also more common in people with autism. Coincidence? Maybe. But all of these things link back to.....genetics.
Thank you for bringing in some statistical basics here! Second this!
Genetics only loads the gun. Environment pulls the trigger
I can’t thank you enough for these videos ! You are addressing my concerns and raising ideas I have too. Amazing! I just listened to a podcast with you and Jen discussing Autism symptoms in women and men and the differences! Awesome work by both of you. Of all the podcasts I listen to you’re the best and🎉❤. I feel like some of the episodes were created directly for me ! WOW ! It’s amazing dear man. I’m so thankful for your support and input especially right now. After 4&1/2 years of being homeless and highly disabled both mentally and now physically ( wheelchair) two broken backs and both arms and I’m going blind and deaf as well. My life is a mess. The V.A Veterans Administration, I’m a veteran has pretty much broken me by many misdiagnosed injuries and mental issues. This has led to dire straits at times. Anyway it’s great you are taking specifically about late diagnosis.
I'm on the Spectrum and I have an allergy to artificial sweeteners that every Doctor tells me I can't possible have because no one is allergic to artificial sweeteners! Artificial Sweeteners cause me to have stroke type symptoms and swelling in the brain. But the MRI scans can't find the bleed that would normally happen with a stroke! I do my best to avoid artificial sweeteners of any kind but occasionally I fall foul because it's hidden in a food that is labelled natural but is actually nothing of the sort!. On these occasions I've been hospitalised unable to speak, unable to write, with paralysis of the limbs which is very frustrating because I can't communicate or do anything. My last visit a year ago was the worst and very very frightening. Orion speaking about this link between Mast Cells, Gut/Brain, and allergy responses makes me wonder if this is what is happening to me? I will probably never know.
Say what, the process for how a few artificial sweeteners are made is something that people on a low FODMAP diet should stay away from. Also anyone can be allergic to anything, might be rare but it happens. I try and stay away from them for that reason and I don't like the taste of them in soft drink.
The hard part is that they can be called so many different things and you also need to know their number as that is often used because people are weary of aspartame for example. I just looked up the wiki for them and it is such a long list.
I misread the title and thought this was about the new Cure album.
😂 I wish !!
Orion, that’s really an excellent assessment you made here! Fundamentally this mast cell hypothesis as a ‘cause’ for autism seems very biased in an assumption to find some kind of pathology as a cause. Mast Cell activation may be more prevalent as a symptom in autistic people, but as you pointed out quite well that does not prove causation. Mast cell activation syndrome is not a very easy medical diagnosis and pretty complex. Mast cells can be basically over reacting in affected people. Sometimes this can be triggered just by stress. It would not be surprising to me to see an increased incidence of mast cell activation in neurodivergent populations that are dysregulated. An overactive immune system and autoimmune problems are problematic equally for neurotypical or autistic people and are often undiagnosed or misdiagnosed.
As autistic person with albeit mostly mild symptoms, I would take a cure in a heartbeat
At my job a new store manager recently got hired and she’s been rude to everyone and recently was going after me because I’m introverted (doesn’t know I’m autistic) but she said something rude about me in front of coworkers and when people do things like that (not only am I introverted but also have social anxiety and probably selective mutism) it makes me want to talk to them even less and not have much respect for them, I was so annoyed that she attacked me for things I can’t really change and I’ve been learning to accept myself for being a more quiet person so she probably just is upset I’m not bootlicking, I don’t like that people try to change our autistic traits, it’s painful and offensive
Thanks!
I really appreciate your support!
@@orionkelly thank you for all you do! you are my favorite reference for late-diagnosed autism. Plus you make me and my fiancee laugh as we learn. I hope some day I can be interviewed. I saw you do that sometimes. If you know of a support zoom group please let me know . Thank you for helping to be my voice when I'm frustrated with my loved one's lack of interest or knowledge.
I recommend you to anybody and everybody!
When my doctors tried me out on Strattera for ADHD I started having wild side effects. Flu like symptoms but more severe than just the flu. I tell my doctors about it and they told me it wasn't the med... that's not a side effect of that med and I have something else going on. I stopped the med on my own and the side effects cleared immediately. It sucks being on the spectrum.. in so many ways that normal folks just don't understand.
Ok and stressed out pregnancy... I've known my mom was stressed beyond reprieve during her pregnancy with me. I've always wondered since about the age of 25, if the stress she was dealing with had an affect on my development. Listening to this podcast just adds weight to it.
I hear ya. In 2023 had a reaction to a new antibiotic, knew it was a reaction because it echoed reactions I'd had to other antibiotics in decades past. Went to Urgent Care where doctor told me it could not be a drug reaction or I'd already be in hospital, therefore you have covid, well ... 3 covid tests later ... not only did the tests show no covid happening, the different third one showed no covid ever ... but ... Doctor insisted I had covid. 🙄🤔 I went home, disregarded the covid info, trashed the antibiotics, and two days later was back to drilling tiny little holes in model trains. ➡ Eventually my brain went, _"Hey! There is medication info on the internet!"_ So, I looked up the antibiotic ... turned out I had 4 of 8 things listed under the "If This Happens Contact Your Doctor Right Now!" heading happening. 📃 Have been to that same health care place several times since for regular Dr appointments and EVERY TIME they email me a satisfaction survey I tell about that incident in the comments section of survey. I AM NOT going to let them forget that happened.
Ritalin and Stratera and a number of other meds for ADHD and each and every one of them made me dreadfully nauseated so I'm glad I tried them but left me with the ADHD and all that entails...
i was on straterra for a while too, what a terrible drug. i guess it works for some people, which is great! but for me, it didn't help my adhd AT ALL and just made me develop really bad insomnia and some other symptoms i don't even remember because that part of my life sucked. i was only on it for less than a year but it was enough. i hated it.
Thank you, Orion. I keep getting pressure to put my newly diagnosed autistic kids into the local ABA therapy, and I’m just not interested in changing their behavior with dog training. As an autistic person myself, it doesn’t sit right with my gut at all.
I’m going to look into the mast cell activation stuff more to see if we could do something to treat our co-occurring medical issues.
If you can get funding for it a neuro-affirming OT is great. Mine the first thing that she did was work out a sensory profile for me to help me work out what things to do more of because they help regulate me, and what things to put in place to help deal with sensory issues (I now wear noise cancelling headphones most of the time at home and have loops for when I am out, I also wear glasses for light sensitivity). The other thing that an OT will do is help you learn how to do the things or if you are having trouble doing them because of dyspraxia for example then they will help come up with alternative ways to do the thing. Depending on what else is going on a speech pathologist can also help.
@ Thank you! OT is what I am hoping to get them in.
@ Cool, be aware that most OT's specialise so you need to work out if you need a mental health one with autism add on or if you need one for physical stuff (the mental health ones can do small amounts of working out accommodations but if it is because of dyspraxia then they might not be able to do the whole thing)
Bless you for protecting your children from ABA training. It's abuse.
Really interesting. Good food for thought seeing as I have my first psychiatrist appointment on Tues. Thanks again ❤
More people do care than you could ever imagine. Obviously the medical or scientific teams that have done this research do care. I give a shit , I love dearly my neurodiverse grandson. And you help me understand him.❤ A great deal of humanity is impacted by autism and dearly love their children. As diverse as autism is so are the ansews to its complexities.
Thanks Orien. You're so well educated and such a strong advocate for "us lot"
You're humour and authenticity have really helped me to process my newl dual diagnosis of AUD-HD
I would like a cure for social stuff and to make it easier to identify and meet all my needs including emotional ones.
I'm 74. Not been diagnosed high functioning autistic.
I always react to substances, but not an allergy. Also have gut problems. And genetic autoimmune disorder...
Nerdy girl.
From the SE Wisconsin shores of Lake Michigan USA:)
👍🤜 always protecting the underdog! Ive done much of that in my youth. Revolution in my blood.
If you react to foods and they don't show up on an allergy test, then they could be intolerances. You work them out with a doctor or dietician by a process of elimination. It would also explain why you have gut problems.
I will preface this by opening this with the fact that my scrambled egg brain is feeling particularly rubbery today, but...
I think you may be dead wrong about this one, or that we have both gotten completely different impressions about this. To me, it doesn't feel like a suggested "cure" for ASD, but rather a potential therapeutic aid to help those with ASD manage their condition and to help identify and isolate comorbidities. SSRIs don't "cure" depression, and stimulants don't "cure" ADHD - they help sufferers manage them (sometimes). To me, the potential for future mast cell therapies being used to "treat" ASD feels more like an antidepressant for ASD.
As for the prenatal advice and observations; that all sounded pretty generic to me, and for the most part is just good standard practice. If you've got autism in your genes, you've got autism in your genes and nothing is going to change or prevent that, but if the standard good advice also helps minimise the risk factors of issues associated with mast cells and that these same issues complicate the disregulation and sensory issues those with ASD deal with on a daily basis, then where's the harm? It doesn't feel like it is trying to erase autism but instead help sufferers manage the bits they struggle with.
I genuinely love your content. As a fellow Aussie, having someone directly address our specific political and social issues on a platform like this is awesome, and your perfectly recorded and produced voice and audio makes your content so much more accessible for those of us with auditory issues than pretty much any other channel here. But, if I may make a suggestion - spell out the "difficult" words on screen in post-production. The generated captions are far from perfect, and as you identified earlier in the video, our accents are sometimes difficult for internationals to understand and the correct pronunciation of many of the more scientific terms isn't always obvious simply by reading them. It might also help to look up the pronunciation of some terms (like "mitochondrial" ;) ).
I'm a bit behind on your more recent videos, but I'm looking forward to fixing that!
Oh yes, thank you, I had exactly the same feeling, that he went down another rabbit hole which diverges from what the actual research is aiming at. Thanks for having made the effort of this comment. Mushy brain here, as well ^^
Spot on pronunciation of "cytokines". I did my bachelor's in microbiology, so I know at least a bit about immunology.
Being an autistic and Epileptic in which no doctor in the USA made the connection between STRESS HORMONES and my EPILEPTIC GRANDMAL SEIZURES that they changed the names of to confuse those that have them.
Stress of any kind be it being scared, overheated but not to the point of heat stroke or other body overheating issues, pain, and illnesses cause my CORTISOL levels to skyrocket, which causes hyper alertness just prior to my having a grandmal seizure.
Epilepsy has a higher probabiloty for those who are autistic compared to neuro-typicals.
I also have a seizure disorder and chronic migraines and I am beginning to believe that along with the autism my brain must be really in bad shape! It's a wonder I can think! I also suffer from ADHD and some snarky anxiety so sometimes I wonder who I truly am 😮 It's miraculous that I love myself (praise God) and just see myself as a truly messed up loving and loved person, no matter what the cost i don't need anything medical to treat me, I just need to be respected and accommodated. Dream on! Life's too big and short to make a problem where there isn't one... sorry to ramble on but maybe it'll help someone to get it together.
When I was a kid, I had what looked like seizures, but when I was tested, it turned out that I didn't really have seizures. I asked my mom about when I was a kid, and she said I was just stressed. While I think she was right about it being stress, I am now shocked that no adult seemed to care that I was such a stressed-out child I had non-epileptic "seizures."
Not me, sitting here watching this with a red puffy face, exhausted, coughing, with severe gastrointestinal issues. Nope, it's not covid, or the flu, have I tried resting? Yes, any new food, skin care, anything? Nope. I do love leaving the doctor with no answers. I am constantly being bothered by inexplicable symptoms and nobody wants to investigate autoimmune issues or any other issues that can occur more frequently with autism. Ok, I find that annoying and dismissive, but more importantly why am I constantly dealing with pain and inflammation (sometimes visible) if I'm physically healthy?!
I don't need to understand the social aspects at play around me! I know I'm bad at that, idc, much sometimes….it is what it is, and it's me! I would like to not feel like I was hit by a truck recently on a regular basis though. I'm walking around like someone twice my age currently and I've basically been told I'm likely faking, as there is no cause for the pain and symptoms.
Idk, I feel like I have some physical issue. It may or may not be related to my autism, but I somehow doubt that curing it would “cure” my autism, not that I'd want that. It would definitely help me to be more included in society, I was always autistic, but I was willing and able to be more social when I didn't feel like this physically. I still had few friends and strange interests and stims, but I felt well enough to be with others.
I don't want a blanket treatment or a cure. I like some of my autistic ways of being! I'm a math magician and I'm going to win the spelling bee and probably the trivia game too! I've caught things that would have been on fire in my house soon and stopped it early more than once. I want care for my body without either having my autism make my physical health be all but ignored by the medical community OR having to treat my autism with my body. I don't need to treat my autism! I would desperately love some help for the (possibly related) physical health issues.
Autoimmune conditions are the devil, chances are that if you have one, you’ll go through months or years of being told “there’s nothing wrong with you”, and, if you’re lucky, getting tests that, at best, show slightly elevated white blood cell levels or mild anaemia.
Women are more prone to autoimmune conditions, and we already have difficulties with getting doctors to take us seriously when we say that we are in pain.
I wish you enough strength to stand strong and not give up. We are often not taken serious when at the doctors because we don't complain in the "expected" way - which I still don't understand. Track your symptoms and the foods and moods you are in. I know it sucks, but like that I was able to figure out that I had serious histamine issues. Tomato soup was the final puzzle piece... For you it might not be MCAS, but have a blood sample taken and screened for the interleukines and TNF-alpha. They correlate with MCAS and auto-immune issues.
By the way, there's a clear link to rheumatoid arthritis as well. My mom already got it (fibromyalgia prior to this)...
Good luck!
@ lol! I too cannot enjoy tomato soup! It’s odd because I can have pizza and tomatoes, but not spaghetti-o’s or certain foods with less good red sauce. There also seems to be a correlation with it being from a can. I have presented this evidence to strange looks, but it holds! About a quarter of a can of tomato soup has sent me to the hospital, twice. (I really liked it!) Unfortunately it sets off a gastrointestinal fit where anything retained in the GI system will be ejected painfully and I will need IV liquids to get through it
Ps, ty for the info! I will look into testing for those. Any answer or even path to get towards feeling better, I’m all for it and all ears!
Unless we are talking magic, it wouldn’t erase the fact that you beings good at math and liking it. But you might find yourself not as easily stuck & obsessed about it.
Thank you for sharing the view that we do not need applause, just a little respect.
I don’t know about you but I really don’t like unexpected applause.
@@resourcedragon I meant it more metaphorically but since you put it that way, I completely agree.
Hi Kelly, I really enjoy your informative videos. I have an autistic partner that I do love very much!
I don´t see a cure like deleting who you are but alleviating the symptoms, helping to make life easier and more comfortable and in total strengthening your personality!
With or without cure you're a great human being!
We have tried Dihexa, SS-31 and Saffron and it can really quiet make a difference
I’ve actually had problems with “leaky” gut - my surgeon said I experienced a microscopic leakage in my intestines - I had needed emergency surgery to clean my abdomen due to the leakage and doctors couldn’t understand how it happened because they couldn’t find any evidence of a tear, but my abdomen was full of bacteria and gas…. My experience got added to a study! (Not this study haha)
It's toxic bile. Lower your vitamin A intake significantly eat red meat and soluble fibers to soak up and eliminate toxic bile. Over time the gut will heal. Or don't. I'm just providing new info to consider.
I would like to explore the inflammation and if it helps sensory based migraines and the inflammation response to hypermobility. that might be something they could work on.
Hypermobility and mast cell disorders are incredibly linked. I have the holy grail of ADHD, ASD, MCAS, POTS, and hypermobility. My sensory issues get worse anytime I have a MCAS (mast cell activation syndrome) flare up.
The current theory of researchers is that mast cell mediators (the chemicals your mast cells store and release) disrupt the structural integrity of the collagen in your joints, leading to hypermobility.
You can kinda think about it like this. You have a factory making cakes, and you have a machine that needs to release flour and eggs and sugar into a bowl. But MCAS peeps have a broken machine and we dump egg twice as often. In a cake recipe, if you have too much egg, the cake won't be structurally sound and it will be rubbery and nasty.
So that's kinda what's happening with the MCAS and hypermobility connection. The cells are trigger happy and release too often.
Two of the mast cell mediators are prostaglandin, which is the pain signal, and cytokines, which tell your body to be more inflamed when you're sick. Prostaglandin is the chemical that pain relievers like Tylenol and Advil and NSAIDs try to block. So naturally, if your body is dumping a bunch of prostaglandin, you're going to be super sensitive to pain signals.
But prostaglandin and cytokines and histamine are only a few mast cell mediators. Your mast cells store thousands of chemicals, and we only know what 7 of them do. So we're still learning about the myriad effects of "adding too much of 1000 different chemicals" to the "cake" your body is making, if that metaphor makes sense. 😂
I would fully support both a treatment that helped develop the brain more normally & a treatment that helps the brain deal.
Sure a lot of autistic people have a great life and found their place in life. But there are many others for whom Autism is very disabling and life can feel/be one big struggle.
I would gladly take a Autism equivalent of the Methylphenidate I am talking for my ADHD. They are definitely not a cure all, but they do help me more of the better parts of myself. Just taking the edge off can make a huge difference. Heck, even knowing it is there as a backup might mean a lot.
Even an almost magic pill that would actually remove my autism might not change who you are. As it won’t ease the past, it wouldn’t give you (social) skills you never developed nor would it ease skills you did learn.
Depending on your autism triggers you might find yourself changing habits. And that special intrest will it be more of a hobby or maybe something you can finally move on away from it. So yes it would be a big change, but your brain might be better than ever to deal with it.
I have a rare brain condition called Septo Optic Dysplasia. This caused me to be born completely blind, and it also caused me to be on the autism spectrum. There is no cure for this, and I don’t want to be changed. The world does have this idea that being blind and autistic is challenging. Yes, there are days where it is. But most of the time it’s not. People tried to take away my accommodations and they tried to prevent me from ever running into things. I was prevented from crying, from stimming, using fidgets and other sensory items, from feeling and touching things as a way of exploring my surroundings, from reacting if someone snuck up on me and grabbed me or stuff like that. I’d say my only challenge in life is CPTSD.
@@siennaprice1351 may i ask how you typed all that out bieng blind? I am just curious is all.x
@ I’d be more than happy to answer your question. I use an accessible feature on my I-Phone called Voiceover. It’s basically a screen reader. Wherever I touch on my screen, it speaks whatever I touched. Other times, I use a bluetooth QWERTY keyboard to type out comments, replies, and messages. I also sometimes use voice to text, but I get bored of using that after a short period of time because I get sick of my own voice saying what I want to type.
@@siennaprice1351 awesomness!
My spouse is deaf and autistic.
Yup! Autism adhd is OK. CPTSD is the killer for living a good life.
So here is a important question. Even if they found a solution to "cure" autism. Isn't the brain physically changed?
Meaning any cure like this likely isn't going to help anyone already born or at least in adulthood. Like any treatment that doesn't change the physical structure of the brain won't cure anyone above a given age. Am I wrong?
Btw on this, I wonder if this doesn't cause autism but is a thing caused by autism. Like since most of us is always stressed out, it sounds like this causes this problem. I think it should be looked into more since it might make quality of life better. But I don't think this is a cause of autism.
Yep, you got it. For a fewe references, look for: ➡ An article by researchers at UCLA, titled "Brain changes in autism are far more sweeping than previously known", from November 2, 2022 which talks about physical changes in brain cells at the genetic and molecular levels. ➡An article at Yale University titled, "A key brain difference linked to autism is found for the first time in living people," from October 15, 2024 where a difference in the number of nerve cell synapses has been seen when comparing brains of autistic people to non-autistic people. ➡ An article in Forbes magazine's website titled, "New autism research finds that autistic brains are differently wired" from October 11, 2024, which discusses research at University of Rochester's Del Monte Institute for Neuroscience which found that autistic brains show a difference in density of neurons.
Yeh, a medical cure wouldn’t make it magically like the adult hasn’t had ASD. Even if it would directly and physically fix the ASD part of the brain, than it still wouldn’t magically fix the rest of the brain nor counter act a lifetime of experiences.
A good opservation! If it hasn't been well tested WHICH causes WHICH, it might just as well be: autism causes more inflammation (and maybe) > more inflammation bad for brain, so autistic symptoms get more severe
@@bluefox5331This would also be a nature vs nurture thing, a pill probably wouldn’t change the nature of our brain structure, but it could help regulate the chemical nature of the our brain. And there is definitely layers of nurturing to prevent an autistic episode as well as nurture triggering one.
Well done, Orion! I’m AuDHD and proud, and the dad to an AuDHD PDAer (I’m prolly PDA as well), and I came across that research while searching journals for something else autism-/ND-related a week or so ago, and was shocked. Shouldn’t be, though. The Autism Industrial Complex is invested in that research, to keep autism pathologized, under the narrative control of the AIC/“autism is a curse/disease” people. They don’t want the autism community to take control of the narrative. But we are! So thanks for doing your part! 🙌
This is so interesting because I’m diagnosed with Mast Cell Activation Syndrome and have for my entire adult life! (Don’t know about younger bc the symptoms started after I pulled an engorged tick out of my head in Lyme central Massachusetts, USA).
Autism symptoms were definitely back to before talking! But maybe the tendency was there for the disorder to develop because of being neurodivergent. 🤔
I’ll finish this episode later because I need to go down the rabbit hole reading about the potential connections!
Ooo I didn't know the autism/ unexplained allegrgy connection. That might explain why every day in the office my whole face leaks (eyes run, nose runs, sneeze constantly) when no one else is affected, and antihistamines don't work to stop it.. it's could be asd stress response.. light bulb moment. Guess I better stop going into the office? 😂 On the wishlist..
same i started trying antihistamines lately, zero effect lmao.
Be aware that when taking antihistamines Claratyne, Telfast and Zyrtec each have different active ingredients. I have tried them all and only 1 works for me. I have big reactions to too much histamine in my system so taking an antihistamine makes a difference.
I can see how someone can mistakenly think it’s a cure because it could help reduce distress levels by reducing brain inflammation. That means now they can’t see it obviously.
But it is actuality a really great idea for anyone to see if looking at mast cells could help thing’s that do distress us. Also if it does help someone, the younger the better because it’s easier to make new pathways to help keep distress levels down. Then people will definitely think it’s a core because they can’t see it anymore. 😂 It’d be like a magic trick.
Also I use neurodivergent because I got my aspergers diagnosis in 2012 but watching your videos have made me realise that I have some symptoms and not others and watching some others have made me realise I had ADHD symptoms and not other. I go with PDA autism but also I still wonder about ADHD. I just call myself neurodivergent to have done with it as I'm definitely different to neurotypicals
I totally understand Orion’s point and I definitely wouldn’t want to be cured out of existence.
BUT
If I had access to medication that
mitigated the parts of autism that make my life hard I think I would take it. It’s true that it can be seen as a way to force me to fit into a neurotypical world. I’d much rather a world that simply accepts and accommodates me so I can live a full and happy life like my neurotypical peers.
But until that happens I would take something that allows me to fit in better. I would do this regardless of how dehumanizing it is. Autism or not I still want love and acceptance.
Good job on "microglia" as well. If only my medical terminology students had been half as diligent, perhaps some would have completed the course...
I experience the issue of having allergic reactions and testing negative for said allergens. My body is riddled with inflammation and have been on a long journey to reduce the inflammation, but honestly never thought about my brain being inflamed and how it has affected everything going on with me. I can honestly say that over the last 2 years, emotionally and physically I have felt better, but there are many reasons. I personally think they are just co-occurring not causation. Yes I am autistic, yes I have mental illnesses and physical disabilities and autoimmune disorders....if any of those parts of me are doing well it's going to affect the next part. So if you are physically sick, it's going to affect your autism. If you are well it's going to affect your autism. Everyone experiences good days and bad days based on how something in your body/minds doing, it's not just a ND experience. Remove the inflammation I will still be autistic, have mental illness, and other illnesses...will I feel better,? yes. will life be easier ? Yes. But I was born autistic
There is something to be said about how stress affects a person, and to know how that affects a baby before being born.
Great video friend! Thank you so much! 👏🫶
This is really interesting. I was highly stressed during pregnancy because of severe hyperemesis, or inability to keep food or even water down, so was underweight and spent a lot of time in and out of hospital.
My two sisters had no problem with their pregnancies, in fact both had six kids, while I struggled mightily to carry and birth 2. My kids are amazing, but have a lot of gut-brain-allergy like symptoms, including hives, rashes, etc. Life has been a big challenge for me, and for them.
I really want to thank you. You are encouraging and helpful. I feel better due to your overriding value of self acceptance and self love.
Thank you, Orion.
As an immunologist, I love the way you pronounce the names of all these immune cells and chemicals 👍
⭐️⭐️⭐️⭐️⭐️
A smart video with detailed information. I loved your counterpoints. Laughed out loud at: 13:57-14:30. I know it wasn't a joke per se, but the profound truth of it hit me funny.
I’m grateful to hear that.
I found Orion to be quite contradictory at that moment you timestamped. If they made a medicine for mast cells, or for making your gut less leaky, or for basically lessening the inflammation in the brain/nervous system, it wouldn't change who you are. It would make sensory issues less of a deal, it wouldn't eliminate them, just make them less severe.
If a part of your body is inflamed, would you not want to do something about it? I wouldn't want to make it a personality trait that my skin is inflamed. I would do what I could to treat it so it wouldn't impact my life so negatively all the time. I don't want my brain to be inflamed! That's my whole ME in there! She doesn't want to feel like she needs sunglasses indoors, and she doesn't want to be in a state of burnout regularly for a long time, and she doesn't want to be overwhelmed at the tip of a hat!
I would be scared if the was an entire "cure-all" for autism because yeah, I wouldn't be me anymore. But making my brain less inflamed so my sensory problems are milder isn't going to change who I am, in fact, it would free me to be myself again! I'm always so tired and overwhelmed that I don't have the energy to be my fun spunky self anymore. I would love nothing more than a med that could lessen my symptoms so I could be more me again. 😢
The only treatment for autism is the same treatment for a number of other maladies - having a less shitty world to try to live in.
'if you cured me, i wouldn't exist' ❤️ happens to be my thought exactly 😂
yes, i totally agree, and i sympathize with orion FULLY. but he's making it seem like these people have magic pills that cure autism for real. what they are trying to make is something that makes the brain and nervous system less inflamed, meaning the sensory sensitivities are lessened. that isn't going to change who you are as a person, it just means that your misophonia won't be as severe, and your eyes won't hurt in the sun as bad, and you won't need to wear sunglasses indoors as much, and smells won't drive you insane, and you won't be as overwhelmed in busy environments, and touch won't bother you as bad, and you won't have meltdowns as often or be burnt out as often. that's it.
@@Star_Rattler thx for the essay, we full well know there is no cure. relax
Upset=hives=mast cell activation
Wow this is so insightful, thanks for sharing this information about us.
I just realized this is who I am at 56, and no medication is my motto.
I can believe that autistic people often have strong allergy-like symptoms, and I would welcome information that would help me function better. (Just like me avoiding MSG and artificial sweeteners helps me function better...that is, being able to function at all.) However, with autism still being rather a mystery, and me being who I am, I can't understand why there hasn't been more serious, methodical, widespread research involving thousands if not tens of thousands of people of both sexes, different ages, and from different parts of the world, whether diagnosed or not, who would be put through a battery of social and psychological tests (to identify if they have what we currently consider autistic traits) and then participate in brain scans both to identify any differences in the structure of the brain as well as scans to show which areas of the brain "lit up" in different activities, as well as DNA analysis, a thorough health screening, and social/psychological history. Would this be expensive, yes, but no more so than the current hit-or-miss type of research, some of which isn't even statistically significant OR that focuses only on children. Plus, we have the computers and AI (groan) now to deal with this weight of data. It shouldn't be about "curing" what makes us us, but about putting to bed some of the dangerous and emotionally toxic snake-oil out there (including the idea that autism is caused by demon possession) and giving us a better quality of life in terms of the things that COULD be improved.
When DNA was sequenced they discovered that autistic people have commonalities and was one of the contributing factors for the change to autism spectrum disorder instead of the 4 previous diagnoses. I don't know if brain scans have been done, but I wouldn't be surprised seeing as you can find ones where there is a control against a wide range of mental illnesses to show the differences in the way that the brain responds to stimuli.
Thank Orion.
I'm proud to be autistic and come from a long line of autistic people, I also have an autistic son. My autisim is who I am and personally I wouldn't change it. Autism pride! 💯
I would look at this a bit more nuanced.
I understand the reaction to the decades(and ongoing) of being seen as deficient because of our nature, double empathy problems, being a minority and living in increasing levels of disabling societies.
And being bloody misunderstood and often mishelped by any and all of the people we might ask for help until we give up on that route. And when we say what we do need, not being believed because of the reasons above.
But at the same time, I see things like correlation with mast cell activation as a way in which we autistic people, seeing as we’re much more sensitive to stressors, are more disabled by our current environment than less sensitive populations. As in: the degradation of healthy gut microbioms due to our current food systems killing off the diversity of microbes, the stress of motherhood, pregnancy and childhood rising due to economic and cultural reasons, just the general loudness of modern society etcetera. There’s not been enough research yet, but I know I’ve had both my sensory sensitivities and my scatteredness worsened in times of hormonal changes or other big stresses.
These things influence us disproportionately, and therefore it might very well be extra important to actively counteract these effects to be our sensitive, autistic selves but with higher levels of wellbeing.
Does that make sense to anyone else?
I mean, getting HRT is hard in the Netherlands, but I really think it would help me get out of autistic burnout quicker because it’s partially caused by perimenopause. And I know I’ve already made major improvements by getting my muscle strength up to scratch with Pilates and my weight/type of food intake and therefore both gut and hormones better with hypnotherapy. Unfortunately increasing life stress has made me relapse on the food front, and it’s a big deal. I can feel the difference daily.
If there are problems going on that can be remedied, that’s great news. My son is on the severe end. I’ve raised him alone for 10 years and if there is something that could give him any measure independence, that would be life changing.
As it is, I have to do everything for him. Washing, feeding, everything.
Yeah. I think that's where there's a disconnect around the concept of treatment and/or cure. For people like your son treatment that could help him communicate and do some things for himself would be truly life changing. For someone like me who can communicate and cope fairly well with the world I'm not looking for a cure, but if there was something that could improve my executive functioning I would give it some serious thought. So the needs of autistic people vary significantly. There's no one size fits all approach.
AMAZING video Orion, but I think you got it wrong! That stuff blew my mind last year, but I didn't want to blurt it out to everyone as it was very new and in my support group the focus isn't on medical explanations. For me personally: I do want to reduce my sensory overload and my migraines resulting from sensory sensitivities and allergy-like reactions. To my understanding they are looking for ways to reduce the impact of brain inflammation and not to prevent autism. ASS and ADHD are a small fraction of the symptom bandwidth and by far not the ones with the biggest impact on the people's life. Long Covid and ME/CFS are sharing some characteristics with MCAS as well. So get over the fear that they want to cure autism, please.
I have been following Dr Theoharides for a long while, because I actually found out I'm AuDHD through that specific link! I have hypermobility (maybe tryptase related, but hEDS like phenotype) AND mast cell activation syndrome (MCAS self diagnosis backed by my GP, but no specialized diagnostician) and just got my assessment for ADHD (positive) and soon autism (high likelihood). hEDS and MCAS are still pretty difficult to disgnose which doesn't mean they aren't real. As a late-diagnosed individual I know how something invisible can be very real...
Managing my MCAS helps me a little with dysregulation, but it's for sure no cure, especially as I was born from a womb that likely had MCAS as well ;)
I'll share a link to a video of Dr. Theoharides about MCAS: ruclips.net/video/avuLp-Fw4kM/видео.html
For those affected: I can recommend taking Vitamin C, quercetin 500 mg with ketotifen. It's not a game changer, but it helped me over 6 months to regain some bits of stability. Maybe it helps others as well and check out the SIGHI list of low histamine foods if you have issues with allergy-like symptoms or GI stuff:
www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf
From a place of love and understanding I wish you all happiness and health and that you are content with who you are and there's nothing wrong with being neurodivergent in a world that's just not made by us for us.
Take care and please don't hate me for being a little skeptical here regarding Orion's "rant"...
Imagine a 'cured' Einstein, or Newton. 🍎
(hint: joke, we know there's no cure lol)
Same I’m good being special or the odd duck. Just accept people never gravitate to you unless they need something and move on doing your own thing.
The allergies you talk about seem like histamine intolerance. I’ve got it, so I have to be careful what to eat. It has to do with stamcells.
Histamine intolerance gives a lot of totally different «illnesses» from skin problems to gut problems, fatigue, asthma you can even become suixxidal.
too much histamine seems to block dopamine receptor to my understanding. this causes the depressive symptoms
No cure for autism coming soon, but some comorbid health issues may be better understood.
Interesting….you are so funny and always make me laugh and most importantly learn.❤
Makes sense when most of the people I know with HSD/EDS also have Autism and go on to develop MCAS (mast cell activation syndrome) I’m not surprised.
You know what i hear with your take on this? You feel so threatened by some who wish to "fix" you so you end up being normal that you are so defensive to the point that you disregard a path that may get rid of some of the conditions that accompany you being autistic. Would you not like to get rid of the most severe aspects that you have to deal with? Would you not like to know how the avoid burdening the future generations with some of these aspects? I personally do value the practices of the medical system when they try to treat things, they showcase short sighted thinking and that is incurring massive damage on the population genetic level, but it is useful in showing what is going on in our biology and it shows pathways that could make things better for future individuals in numbers much greater than exist now. If we expect to survive and thrive we must understand the basic mechanics and how they interact with each other and the environment. I hear too much emotion and very little signs of understanding in this video.
Orion, I've enjoyed the relatable memes you post on RUclips. Figured I should actually watch your content. As someone who is autistic, I understand the thought process that "If I weren't autistic, I wouldn't be me." However, this doesn't change that autism is a disorder and my life would be significantly improved without it. One of the saddest things for me is when I hear fellow autists say "There's nothing wrong with us; it's society that needs to change." Human behavior cannot be socially engineered. It's a waste of time and effort. Simultaneously, I don't appreciate people suggesting I cannot change on an individual level, which is something "accept us" autists seem ideologically opposed to. Nothing has made me feel more alone than the feeling that "my kind" is obsessed with something I don't believe in and would sooner mock me for wanting more out of life.
you are doing well with the science words
I don’t want to be cured at all even if there was way to totally reverse autism I wouldn’t take it I like being autistic. I don’t want to be like everyone else I thrive off being different
Perhaps all it does is help you be the best part of being you.
I want a cure. Autism has been ruining my life for my whole life. Im over it and want it gone. Yes, i see it as a problem which needs to be resolved.
"I want a (...) to be resolved."
I know the feeling... all to well.
How could the research help? It could stop policies which stress out pregnant women, policies which REQUIRE them WORK while pregnant, constantly scrambling to care for children hold down a job manage a house AND be healthy to grow the fetus inside... All at once... in order to qualify for their medical insurance or state Medicaid.
And, while I know some people won’t like me saying this, stop forcing women to carry pregnancies they don’t want.
Excellent video
Leaky gut? Isn't that another name for IBS? They can identify IBS only by symptoms, but unlike IBD or Chrons disease, it doesn't leave a physical mark on the intestines. If there is a connection between IBS and autism, that would really be something.
I have always heard that my Grave's disease and my IBS were connected, but I never thought of connecting my IBS and my autism.
I thought it was too, my understanding for helping IBS is working out what foods your gut is reacting to and not eating them. If you have food intolerances they usually present digestively, work out what they are, don't ingest them and you help your gut.
I eat a low FODMAP diet (each person it ends up individualised and when you are eating that simply then you can tell when you are reacting to something) and from that have added more things to the list that I react to. I have had people tell me that it is only supposed to be short term but since eating like this I am not anaemic for the first time in my life and my cholesterol and sugar levels are much better too. So sorry not sorry not going to go around introducing things to see if I can expand my diet a bit especially as for me I was originally told that I could have eggs as a sometimes food, I over did it but it took months for that reaction to set in, now eggs are something that I can only eat when they are fully baked through in a cake.
Great information provided in this video, but can’t say I agree with the this is the way I am bit. Personally if there’s a way to reduce anxiety, improve social interactions & rid myself of the stress hypersensitivity causes i’d take advantage. Been experimenting with heavy bitter herb consumption just recently and seeing improvements, then this video comes out. Synchronicity is amazing
The thing is that if you didn't have those then based on the deficit model you wouldn't qualify for an autism diagnosis in the first place so therefore, they have cured you.
I believe I had a different reaction to this than most viewers. I’m Autistic as are my kids. The oldest is not only Autistic, but also has hypermobile type Ehlers-Danlos Syndrome and MCAS.
And yes… when I was pregnant with her, I experienced panic and anxiety starting right after the ultrasound. Best guess is that it finally hit home that yes, I really was gonna have a baby and boom, panic. Sure, I wanted to have a baby, but reality still hadn’t settled in.
The hospital system I was in was hot trash and is fortunately no longer in operation, They sent me to a therapist whose approach was to let me vent for 45 minutes and then recommend that I buy “Don’t Sweat the Small Stuff (And It’s All Small Stuff)” because clearly the problem was that I’m just too hysterical over nothing… right? Only he did it at every session as though he forgot he mentioned it before.
So here we are, 27 years later, and the MCAS… whether or not my panic disorder caused it, much less her Autism… is keeping her a veritable prisoner in our home. Because, y’see, her digestive system will periodically purge itself. Both ways. And it hurts. And she’s afraid to go far from home, because she doesn’t have much warning… just enough to run to the bathroom. We can’t figure out all the trigger foods,because it isn’t necessarily an immediate reaction. It builds up in her system. We need to get her to another immunologist, but have had a challenging time getting it scheduled due to her stress levels and uncertain digestion and sleep schedule. She sometimes sleeps far longer in one go than she should be able to at her age.
So this research is of interest to me, if it means that we come closer to finding a more effective treatment. I want her to have her life. Autism isn’t what’s preventing that. There’s a condition here very much in need of a cure, and it’s MCAS. In fact, that and other digestive disorders… that’s where that research money needs to go. Ask anyone whose digestive health limits their activities. THEY want a cure. They should have one.
Breathing disorders, hormonal imbalances, heart health, liver function, insulin resistance, reproductive struggles… so many people in need of medical miracles, and they’re trying to cure us! Or prevent us.
I wish you all the best on this harsh journey. But I want to emphasize that the stress during pregnancy idea is not a general understanding but just another possibility. Actually this includes the "stress" of fighting a virus while you are pregnant. With MCAS then also the barrier in the placenta is leaky and virus toxins can enter into the environment of the developing embryo. This is to my understanding a far more likely cause and I want to take some of the mental burden off you. You seem to feel very helpless and responsible for your child's struggle. Feel a hug from afar and you have been heard. May the universe or whatever force there might be help you to get through this!
I have a lot of food sensitivities and they can make me seem manic when active.
I had an allergy test and was told I have no allergies, but I have had rashes and feeling like my whole body needs to sneeze. I have been diagnosed with sinusitis. I suspected I may have MCAS. My mom being stressed during pregnancy? Highly likely.
Acceptance. Yes that is what I want and need. I have a care coordination person who has been just wonderful and I asked her how did she learn how to treat me properly, like, did you learn about autism somewhere that made you accepting? And she told me she accepts people as they are... She didnt learn something specific about autism!!! she just had acceptance! That's what I need from people! Acceptance!
Very interesting. This is the first time I've heard about MCAS, but it makes sense.
I’m a late diagnosed autistic adult. I figured out I was autistic during severe burnout. I also developed allergies to things I wasn’t previously allergic to during this time, and developed more severe reactions to things I was mildly allergic to prior to burnout. I have been prescribed Ketotifen for MCAS, or mast cell activation syndrome. It has helped me not only with my allergies, but overall improved my energy levels, mood, and sensory sensitivities. I’m not saying I agree with the research you discussed, just an interesting anecdotal observation. Allegra, an OTC allergy medication, as well as Pepcid, also helped me, although not nearly as much as the Ketotifen has. I still haven’t watched the Cameo you made me because I genuinely forgot about it until now. Did I mention I’m also ADHD? 😅
Edited to add: I don’t believe in “curing” autism or inflammation causing it. I was just explaining the interesting link between mast cells and burnout for me.
Hi that is interesting. Good response and thoughts. I'm not sure what came first, the triggered mast cells or the autism stress. Interesting about the gut brain connection and the stress in pregnancy connection. Of course like all research we must look at the limitations in studies.
I actually am a doctor lol but not an expert on this topic. I don't want a cure for autism. The eugenics behind it and "treatments" are terrible. I've been a participant in studies about autism because i want more understanding and help for autistic people. But it is a minefield choosing research groups that don't have a cure as either their main purpose or as a side quest of theirs 😅
Btw it is pronounced mitochondrial with a K sound and microglia is pronounced microGLEEah 😂
I found the stuff by Theoharides pretty decent
A beautiful working of the inner workings of my body it’s developing as listening to this because I never stopped to think about both at the same times. 😮 This is awesome!
Guess which of my brothers isn’t autistic? The one that’s the oldest of the four kids! Everyone else only has more symptoms according to order.
Exactly! Great reasonable thoughts, wording, ideas and conceptualization.