Autism and Surgery: What you need to know - Dr. Kaveh LIVE
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- Опубліковано 23 лип 2023
- #autism #mentalhealthmatters #autismawareness
Patients with autism often don't get the care they deserve. Understanding and appreciating neurodivergent patients helps us better care for them and neurotypical patients, too, in the stress of surgery.
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This video shines a spotlight on the unique experiences and challenges that patients with autism face during surgery and anesthesia, offering vital insights for healthcare professionals, caregivers, and patients alike.
This video tackles head-on the critical issue of impulse control. We delve into the difficulties that individuals with autism often face, such as maintaining focus, managing distractions, taking turns, and adhering to instructions. We highlight how these struggles can escalate in a surgical setting, potentially leading to emotional distress and embarrassment in front of the medical team. This is an aspect of autism and healthcare that is frequently overlooked, and by shedding light on it, we aim to encourage more compassionate and understanding practices.
Patients with autism can find surgical environments exceedingly stressful due to the unfamiliar surroundings and procedures. This stress can amplify impulse control difficulties, escalating the risk of emergence delirium. In our video, we delve into this post-anesthesia complication and discuss the potential for it to evolve into long-term problems, such as trauma, PTSD, and maladaptive coping mechanisms like panic attacks and tantrums in anticipation of future surgeries.
However, this video is not about presenting challenges without solutions. We bring to the forefront several practical strategies that anesthesiologists and doctors can employ to reduce anxiety and foster a more positive surgical experience for patients with autism.
We emphasize the significance of thorough preparation and rehearsal 1-6 weeks before surgery. By familiarizing patients with the upcoming experience, we can dramatically decrease anxiety levels and enhance overall patient outcomes.
Our video also discusses the role of pre-medications, like ketamine, midazolam, and dexmedetomidine. We explore how these medications, administered intranasally, intramuscularly, or orally, can ensure a smooth and swift induction and emergence from anesthesia.
At the heart of our video is a powerful message of equality and respect. We firmly believe that patients on the autism spectrum should receive the same quality of care as any other patient. Moreover, we propose that the strategies we discuss can be beneficial to all patients, improving the overall experience and outcomes of anesthesia.
This video serves as an essential resource for healthcare professionals striving to improve their practice, for caregivers seeking to understand and prepare for the surgical journey, and for patients who deserve the best possible care.
Join us in making a difference in healthcare. Watch the video, learn from it, share it, and together, let's ensure that everyone, regardless of their condition, experiences top-notch healthcare they deserve.
References:
carmenbpingree.com/blog/the-r...
This video/speech/channel DOES NOT CONSTITUTE MEDICAL ADVICE. Patients with medical concerns should contact their physician. If your concern is an emergency, immediately call 911. This information is not a recommendation for ANY THERAPY. Some substances referenced in this content may be illegal, and this content is not a recommendation for, or endorsement of, their use in any way.
I am an autistic adult. I had a surgery that I was a bit afraid about but definitely needed. I am sensitive to many chemicals, such as anesthesia and pain meds due to genetic mutations.The surgeon and anesthesiologist dedicated extra time and appointments during a year long process to prepare for the surgery. I really appreciated the extra time they took to help me feel comfortable and reassure me of my fears. I did have a meltdown (not a tantrum) in my surgeon's office and the whole staff was so understanding. Everything went smoothly by the time we finally got to surgery
Sunglasses, earplugs or over- ear earphones, a piece of velvet or corduroy to hold in the fingers, maybe a little vanilla under the nose.. these can help with sensory issues and anxiety. (I am an autistic adult)
That's great, thank you for mentioning a couple extra tricks, too!
I'm an autistic adult too. A lot of times, I have ear plugs in because I hate too much noise. My ear plugs make it to where I can't hear anything which is great. No one seems to get it .
@@ezekiel5687 Earplugs help with noise, however I find I still struggle around pumps, as I can feel that pressure wave through my body, not just my ears.
Thank you for recognizing neurodiversity in medicine. Please do consider that you seem to be describing autistic meltdowns-not tantrums (there are quite a few autistic UA-camrs that explain the difference). Also, often autistic adults are undiagnosed (especially those who are not white males and therefore tend to present differently), so it's great that you acknowledge that accommodations meant to help neurodivergent people can also help neurotypical folks.
Super contribution, thanks! 👍
A very important point meltdowns can take many forms as can the related shutdowns.
Ty for this. Just left similar comment. I adore Dr Caveh. After our education, I doubt he’ll make that mistake again
Yes I cringed when I heard tantrum…very different from meltdowns. As my 14 year old son makes developmental accomplishments, I can definitely tell the difference between his tantrums (NT behavior=good) from his involuntary meltdowns.
I want to say, I'm deeply impressed by your sense of empathy and your focus on building an environment for all surgical patients to thrive in.
Even outside of medicine, this is something the world is lacking in general. Watching your videos give me a certain feeling of hope, and it makes me want to work on being a better person.
Better understanding even a small group of patients can help us better understand all patients 🙏 this is the type of care I would want my mom to have if she ever needed surgery
@@MedicalSecrets I also love how caring you are I had surgery when I was 19 ( I'm 20 now) and I have high functioning autism and was so terrified to the point i was scared to tell anyone or say anything so i suffered in silence..
As a late diagnosed adult, I was left with trauma after me a surgery 10 years ago. I didn’t know why for a long time but after analyzing it for years, I do now. Firstly; It was lack of information. There I was trusting my life with hospital staff but they did not communicate with me; they acted like I was not in the room and I’m a person who wants to know exactly what is going on- this chart there, your name bracelet there, your gown because, your paper hat because, the needle here, what goes in there? Why? How/where do I wake up? What happens if I have pain but I’m too incoherent? Or simply … what is your name nurse, doctor, surgeon, assistant? Plus I woke up completely soaked after the surgery. I had wet the bed till the age of 22, so I thought I had ‘done it again’ and was panicking, feeling so embarrassed, hating myself (was suicidal for years because of it) … then I tried to ask the nurses, they laughed it off, put an extra blanket on me. I was like this isn’t funny … and I hated hated loathed loathed that experience so much that for years I refuse to go to have surgeries on my neck and shoulder, have to use strong pain meds. Thanks for this very important video 🙏
Omg we are the same. I’m late diagnosed autistic and I wet my bed til I was 16. I can’t tell you(but I bet you’d understand) how humiliating this was for me growing up. I never went to sleepovers as a middle or high schooler bc someone might find out. I thought I was crazy, worthless, weird, different. I was also suicidal. My autism isolated me from my peers so I had few friends. Not knowing all that time what was “wrong” w me, I internalized all the confusion n self hate. Now Ik n I’m better. Good luck to you!
Difference between sensory melt down and tantrum. Tantrum is a controlled behavior. I had a melt down going into surgery recently due to past trauma of gas usuage to sleep as they didn’t want to work with trying to get a difficult iv as would not use port. Also the versed wore off before getting in so lights, noises, lots of talking in room, and asking me to move to table right then. I then could no longer talk and tell them how to help me calm down like no talking, lower lights, decrease noise, adding a lead vest to weight me, let me squeeze a hand I know. I am almost in tears just remembering this. Wish more dr like you listen and understand. Will use your video for Dr in future
For what I’ve heard in the few first minutes of this video, I will say that I agree with you.
As an autistic individual I must say, this is the case in every environment.
Your videos have been life saving for me.
Very helpful info, not only in the operating room, but in life, as well. Understanding that there are impulse control issues in autism spectrum disorders for some is half the equation.
Talking to a person and letting them know what to expect, in any situation, and letting them know that they are strong, that they "Got it", that you are there WITH them, to see a person through a surgery, NOT that you are there to "Do something to them", makes a difference as well.
Let them know that we're doing this together, as a team, to get them better, instead of the "us vs. them" mentality, can be incredibly helpful, not only for those on the autism spectrum, but for anyone facing surgery, or any difficult situation.
We're ALL on a team called humanity, and we all need to help each other through difficult times, be it surgery, or any other challenge in life, or problems, such as conducting research, or a college exam, or whatever.
We ALL have our areas of expertise and areas where we aren't quite as skilled and need help. We all do better when we help one another.
I absolutely love this! Thank you so much for inspiring and sharing!
This is absolutely true 100%. Beautifully said too. Thank you!
@@MedicalSecretsWhy not address what has been causing "Autism" instead of just treating the symptoms "Dr."?
@@watkinsinc.7147Autism is a neurotype. It is caused by our brains being differently wired. It is linked to genetics and is not a disease to be cured, but a disability to be supported.
@@watkinsinc.7147 Autism is a way of being related to the way the brain is wired and perceives stimuli. There is no one identifiable course and it is no more condition to be cured than brown hair or blue eyes. It is part of the variation inherent in the human race. Without autistic people, everyone would still be in the stone age, most inventions come from the oddball loaner who thinks (ie the neurodivergent individual a category of which autism is a significant part).
This is fascinating to me, both as someone who is autistic and in the hospital a lot. My mum was a critical care nurse for 40+ years, I was in the hospital a lot as a kid (both for several eye surgeries and procedures, and visiting Mum), and my passion happens to be medicine (pharmacology is where my heart lives, but hand me any medical textbook and I’m happy for the next 3 weeks).
So, for me, all of those hospital noises are calming - the beeps, the alarms, the PA, the sounds of nurses talking - because it means I’m in a safe place, and that feeling can bring down a whole lot of my anxiety.
But there’s also always a point where the amount of stress, pain, nausea reaches a point where it overwhelms my ability to speak, and then I’m nonverbal until things are under more control. And that’s something I’m still learning to navigate.
Thank you !! I have a son on the spectrum who is now a adult and the lack of understanding and empathy we both endured during his childhood was so incredibly hurtful and damaging. When he was young it really wasn't diagnosed as autism . He was diagnosed with pervasive developmental disorder not otherwise specified. Which now is now recognized as autism. Other parents were so judgmental ,often just down right mean and abusive.
I'm so sorry you had that experience, but I greatly admire your vulnerability in sharing that. I hope that you have since had more empowering experiences in the health care system
I'm autistic, thank you for this!!!
I had anaesthesia as a teen and apparently had to be held down as I was fighting to get up as the anaesthesia started to take effect. I wonder if this is because I masked so much and was likely suppressing incredible amounts of stress.
Also tantrums and meltdowns are very different, it would be awesome if you could watch some autistic people who talk about what meltdowns are like.
Also, much of the Autism community refer to ourselves as autistic people, not people with autism. Autism is a disability and it makes life incredibly difficult at times but it isn't completely a negative and is intertwined with who we are. If I wasn't autistic, id be a totally different person. And who I am is not bad :)
I find ear defenders, fidget toys, sunglasses, not being touched by strangers and having my partner present incredibly helpful in all situations. My partner is a MASSIVE support and comfort.
Amen I can relate
I‘m a late diagnosed autistic adult. a few years ago I had to have a tiny procedure in a delicate place that I opted to be sedated for (before I knew I was on the spectrum). there was this amazing anastesiologist that explained to his student intern and me why he chose the medication he did for my case.
there was also a nurse who refused to use the vein I indicated in my armpit for the IV and insisted on using the back of my hand only to give in after torturing me for 5mins or so… in the end the pain from those IV attempts was worse than the procedure wound 😅
I think a lot of your tips are great, I would just add that you could point out the possibilities for stimming (sensory seaking behaviours to calm us and off-set uncomfy sensory input) especially for people that stay awake during a procedure
personally my best experience waking up from sedation was after an endoscopy when I got served sweet tea and biscuits the moment they determined I was awake enough 🤣
I'm Autistic and when I had my tonsils out I freaked out at the pre surgery check up and got told I was being a brat. I also had nightmares while under anesthetic. It was traumatizing for me.
Thank you very much. Oh, the struggles I had with nurses not removing my painful catheter even though they did have doctor's orders to remove after 24hrs and those were over, yet htey waited for doc to come in again. My ADHD brain is doing a great job managing my impulsivity by now, but when really pointless stuff like this happens, it's SO freaking hard to cling to your regulating methods (x_X). And all the things and times you seem to have to explain from scratch why XYZ doesn't work for you, like it would for a neurotypical person, cause your brain really handles the very same information differently and my priorities really differ from what is perceived as "usual concerns". X'D
Walking through life on "hard mode" and constantly getting told how it's supposedly simple, easy and "normally like this" ..... but then it isn't. And hte looks of ppl when they suddenly get that they really should have listened to you when you warned them that that's not how things work for you ..... . ///orz///
Not only am I often not given information crucial to me (cause they're considered "unimportant") but also, people get annoyed about me asking very particular question and then I must manage their insecurities as I see in their eyes how the "don't you trust me?!!!" mode kick in. Nope, sorry, I cannot go trusting you, since your chances of getting things right in my case are just really really low by the nature of our differences :\
I'm an older woman with Autism. For me, loud noises, including loud voices can trigger anxiety. As a retired RN, I've seen other healthcare workers (unintentionally) raise their voices when talking to an older person, perhaps subconsciously assuming they're hard of hearing. In fact I had it done to me when at an urgent care, last year, & had to ask the nurse a couple of times to speak in a normal tone. It's very hard to concentrate on what someone is telling you when your heart is racing & your stomach is in knots because the speaker / healthcare worker is speaking as if to a deaf person.
I mention this here only to bring it to people's awareness that the volume of their voice, especially when dealing with autistic and / or older people, can be very distressing if the volume is too loud. 😊❤
Thanks for these wonderful videos!
Lifelong sensitivity here, too, even as I age. It can make it hard to think let alone cope! Having a family or friend advocate when I can helps. Best to you.
Honestly, even with someone who is Deaf or HoH, speaking louder isn't always the right thing to do, either. In most cases, it's far better to speak more clearly while facing them, perhaps slow down just a LITTLE bit, to make it easier for them to read your lips if that's a thing that they do but again - ASK them. Ask what they need. ALWAYS ask what someone needs, but it seems that neurotypical people assume to know what neurodivergent people need, as well as hearing people towards the Deaf community. This seems such a fundamental thing for me, towards anyone who has needs that aren't being met. I don't know why it's so hard for people to remember to do it, honestly.
@@JustAnotherBuckyLover Family experience, agreed. 👍
@@JustAnotherBuckyLover exactly right. 💯 ❤️
I have an adult friend who's on the spectrum and I think they'll find this information useful. Thanks for addressing this issue!
Thrilled to bits you are an understanding ally, you can't know what it means to have such a friend! 👍💞🙏
Sweetie, they’re called meltdowns, not tantrums. Tantrums imply will. Meltdowns are a response(generally) to severe over-stimulation and are not under our control if pushed/stressed enough
Hi! I'm autistic and will be having a procedure this year to remove my endometriosis. I find your videos very reassuring, and knowing that you've taken the time to specifically address autistic patients means a lot! Not very many people, including medical professionals, consider our needs so it means a lot when people like you do.
Thanks for posting this Dr Kaveh. I'm a Cal Poly Pomona educated lisenced architect in California with an extensive background in healthcare design. My body of work includes the design and construction management of a boutique Ketamine infusion clinic in Los Angeles.
I'm also autistic.
I've done extensive work for Kaiser Permenente. Medical facilities are designed to faciliate medical proceedures above all else. As such they are terrifying torture chambers for people like me. There's little doctors can do in institutional settings like hospitals about this, but they can and should make sure their private practice facilities are autism freindly. That will also make them less stressful for everyone else. To do this, you need to hire an autistic architect or design consultant and collaborate with them on making the interiors of your suite and treatment rooms autism freindly.
Another important point: We ARE autistic. We do not "have autism". It's a subtle but imporatnt distinction that even I mess up sometimes - and I'm autistic lol. People "have" diseases. People "are" white, latin, asian, or straight, LBGTQ, or paralized, blind, autistic, etc. If you "have" something you can get rid of it. If you "are" something, getting rid of it gets rid of YOU. Most autistic people spend thier lives trying to get rid of themselves by trying to supress and mask their autistic traits to fit in. This is a matter of survival. It's instictual and unconcious. It creates enormous stress that's constant, causing unremiting lifelong anxiety unless we are aware of our autism and recieve the proper support we need. This support varies for each autistic person, but certain things are clear:
We are highly sensitive / insensitive to external and internal stimuli. We usually have great difficulty with new places, people, and experiences. The repetitive / steriotypical behaviors you cite are instictual coping mechanisms that soothe our anxiety. The more stress we are under, the more these behaviors manifest. We react differently to medicines. Hospitals and medical facilities are a sensory nightmare for us because they are bright, loud, smelly, unfamiliar places filled with unfamiliar people and proceedures and jarring sounds.
As a result of bad sensory enviroments and a lack of awareness and support for our needs, many of us shun medical care until a condition becomes acute or even life threatening. This may explain in part why autistic people have lifespans 20 years or more shorter than average.
Finally, in case anyone missed it, autsim is not the same as intelectual disability. Some of us are very intellegent, some of us are not, most of us are of average intellegence. The main difficulties we face are social ostacization because of communication difficulties and behaviors nuerotypical people find off-putting. This is not something we can change anymore than a blind person can magically see. It's bakd into who we are, and it requires awareness and support if our gifts for the world are to become manifest.
Otherwise, we tend to withdraw and isolate ourselves to avoid the stress and anxiety and trauma of tripping over social things we cannot see, and which are constantly changing. It's absolute hell for us - not the autism, but the way non-autistic people unwittingly treat us. In the end, we are both blind to the needs and expectations of the other. That's why we have so much difficulty interacting accross nuerotypes.
What an excellent explanation. I learned a lot and will integrate this into my practice! Thank you!
I asked you on a previous Live about Iran. I didn't have enough words to type it clearly. Being autistic (high functioning), I find there's an unwillingness by doctors here to answer questions... and those answers are key to me helping myself prepare. For me, I dislike glasses, headphones, etc. touching my body. The quickest way to calm me down is to either just start telling me about yourself so I can focus on your story (I don't like answering questions, as that is stressful), or letting me see the screen and just telling me facts about heart rate or such. As for pain, please don't ask me if I'm in pain. I will spend half an hour trying to figure out what I feel, and whether it qualifies as painful enough to be "a little," "some," or "a lot." Thanks for doing this video!
This video meant a lot to see. Thank you Dr. Kevah :) I have form of autism. Thanks for taking time out to spread care and awareness. Love your channel:)
I’m in my mid-50s. I was diagnosed as autistic just three years ago. Back in the late ‘60s and early ‘70s, kids who were able to communicate weren’t generally considered autistic; we were just thought to be extremely shy, weird, antisocial, etc.
I had to have multiple surgeries throughout my childhood and I clearly remember having extreme meltdowns both before and after surgery. Even when I was 15-16 years old, I would still have screaming, crying meltdowns when I was being prepped for surgery. One of my main "problems" is that I often find it difficult or impossible to speak to a stranger, especially when I’m stressed. I was unable to communicate with nurses and doctors, which caused even more stress, leading to the meltdown. I also HATE to be touched. I would be so embarrassed by my own behavior, but I didn’t know why it was happening so I didn’t know how to mitigate the problems that led to that behavior.
People wonder why I wanted to pursue a diagnosis of autism as a 50-something adult, and it’s for reasons exactly like this. I still have meltdowns when it comes to medical procedures; I had to have two MRIs recently to see if my melanoma had metastasized to brain cancer (it hadn’t, I’m happy to report), and I behaved very poorly toward my husband when he drove me to the appointments. I nearly snapped his head off when he missed a turn on the way to the facility…
For me, helping to fix this would be as simple as medicating me in advance. A Valium would solve above 90% of my problems. I have to be medicated in such a way to see the retina doctor, as I learned 20 years ago, but other doctors have refused to do this for me. "You’ll be fine," is a very common response to my concerns. At least now that I have the diagnosis of ASD, I should be able to have a better conversation with any doctors I see.
I know some people with autism, I learned so much about anesthesiology and autism! You’re a great anesthesiologist! I really enjoy donating to the anesthesiologist Foundation, since it was hard for me to go to college because of my cerebral palsy, I really wanted to be a anesthesiologist physician! How old are you? I’m 33! You rock man
Another thoughtful banger from Dr. Kaveh! 👍😎 & I'm one of these w/ problems w/ Verbal Instructions and sounds, especially when stressed! Thanks for understanding our differences. 💞
Thank you for this educational information. My son has Asperger's & was not really worked with. He's been around "professionals" that don't see or respect that in him. As he gets older, I'm seeing he's becoming more sensitive to stimuli. I wish he could get respectful, medical professional help. Thank you for bringing this to the forefront of my attention again. 🙌👏🙏❣️
As an autistic adult, I really appreciated my surgeon and anesthesiologist allowing me to place a weighted stuffed animal on my chest and drawing up some Versed just in case. We also talked very frankly about the procedure both before and after surgery, so that I knew exactly what would happen. And they even let me participate in the countdown a little.
Thank you for sharing your perspective! I hope it inspires others to feel more comfortable before surgery
As a mom to two autistic kids, this info is much needed. Sometimes we hit the jackpot with understanding medical professionals and sometimes they give the stink eye, because my distressed autistic teen is behaving more like a young child. Also, one of my kids hates being touched unless he knows exactly what will happen and gives consent. This is something all doctors need to work on with all patients. Last time I had surgery I had a nurse start spraying that cold spray on my arm before an IV without warning. Then she proceeded to very painfully insert the IV. I would have said no to the spray if she had asked. It didn’t do anything except irritate me. If she had done that to my autistic son he would have been out of that bed and down the hall in half a second.
Exactly how my niece's doctor & anesthesiologist did my surgical procedure. They even had me walk in surgical room & held her hand as she went to sleep. And i was holding her hand when she woke up. Great video Doc. 😮😅
PS - just like in surgery, taping video's have steps too (ie turning off camera 📷). "Oh crap" - was howling at your expression. Thanks for what you do.
Thank you for the video.
I'm Dyslexic, Autistic, ADHD myself & I recently took my 4-year-old son for a medical appointment,
we had to do a blood draw & it went great.
By keeping him distracted & entertained he wasn't anxious to start with & UW hospital has a team just for young, or challenging patients.
Personally I missed out on an upper spine MRI myself, as when I showed up for the appointment, I wasn't prepared to have my forehead strapped to a board while alone & in a claustrophobic tube (we all have our own phobias).
I will be trying again in a few months.
Why the HECK are they strapping you down? I just had head and neck MRIs done a few months ago, and while it was horribly uncomfortable because of my other medical issues, not for ONE MOMENT was there even a suggestion that I would be strapped down. That's ENTIRELY unnecessary unless you're physically incapable of lying still for a few seconds as they take each scan, and there are breaks between each "pass" as it were.
@@JustAnotherBuckyLover I don't know why they require strapping the patent down, however I asked if I could just lie still and they would not allow it.
The padds cradling my head where fine, but the strap across the forehead, being unable to move, till someone else enters the room & releases you, is difficult to work through.
As they left the room & I was entering the MRI, I started begging them to get the straps off me as fast as possible.
@@1997Jeep I'm so sorry that you had to go through that. It seems entirely unnecessary in this situation. Sending you gentle thoughts and I hope that you have a more comfortable scan in the future. I would definitely call them, however, and ask WHY they insist on strapping your head in place, if only for your own peace of mind going forwards.
I have ADHD and ASD and I hate anti-anxiety pills. I have slight hallucinations, headache, nausea and they don't help me with the anxiety at all. It was only before I was going under the last time when my anesthesiologist appreciated what I was telling him and didn't give me those pills beforehand. It was the best anesthesia I've ever had. I was calm and feeling good actually. I was able to overcome anxiety with my own coping skills and had clear head before and after.
Thank you for your work here on youtube, Dr. Kaveh 💜
I have an adult family member who is autistic. All of your strategies are spot on things that would have helped them in past medical situations, including surgery. We have advocated for some of them in the past, but you have given me even more ideas for ways to help. Thank you so much for the excellent information!
Keep on advocating for them, your support must mean so much. They must be lucky to have you 🙏
This is my worse fear! My 6 year old son is having dental surgery on Wednesday & i hope/pray that the staff understands this especially him being non-verbal and having anxiety.
Fantastic wisdom!
I appreciate you talking about neurodiversity in medicine, but it is important to recognize the difference between a meltdown and a tantrum. A tantrum is driven by selfish desires or me me me. A meltdown is caused by sensory overload. These are important to not only recognize but to differentiate as we get judged hard enough, and people need to understand that a meltdown can be from all sorts of things, bright lights, noises such as beeping that doesn't turn off, smells, textures, and so much more. As you mentioned the mask over the face can be a sensory stressor, then you have lots of bright lights in an operating room which are a huge trigger for a lot of us, the sun for many of us can be tiring because it is too bright. The mask added to the bright lights, the repetitive beeping, the pressure of the BP cuff or the finger blood oxygen monitor, and the taste of the oxygen. You also have to remember that our senses are heightened and we are hearing, seeing, tasting, and liking things that we can't, so there can be stressors you don't even know about because you can't sense what we are sensing. Often things like the electricity in the wall, were a big one for me before I lost my highest frequency of hearing. You might now notice that a light is flickering and buzzing, but it will be driving us freaking buggy! Each of these things adds to our sensory load, and then there are the things that people might not realize that get said to us.
Like the surgeon who did my appendectomy recently, when I told him I was autistic, he looked at me and said, "You don't look autistic?" I looked at him and said, "What do autistic people look like?" People don't realize just how invalidating that is and how irritating it is to us or anyone with a disability seen or not seen. I have seen people tell a blind person they don't seem blind because they are outside without sunglasses on or they are looking in that person's direction. As if all blind people wear sunglasses outside or they can't hear where you are speaking from. So before even the surgery has started the sensory load has started to build. They may be near meltdown before they enter the operating room. I personally have been through a lot of trauma therapy and that has increased my sensory tolerance and lowered my sensory load becoming overwhelming. Unfortunately, so many are not able to get the same therapy or even able to get diagnosed because of the poor education of most doctors. The fact that you recognize us and obviously have spent some time researching on your own because I know medical school didn't teach you this! I am impressed!
Thank you for another informative video. As an autistic person myself, I always appreciate it if staff introduce themselves and state their role when I arrive in the operating theatre. It makes me feel more at ease before surgery. What stresses me out is when more than one person talk to me at one time and if I am given conflicting instructions.
Thank you! Some tips from someone on the spectrum who is also a former paramedic: communication is crucial, and medical personnel often won’t have access or time to look at your history. Be honest with your provider; any other course really hurt your chances of a non-traumatic experience. It’s not easy to say, “in my experience, fentanyl and midazolam together cause emergence delirium. Some environmental stimuli may cause a shut-down (an alternate to melt downs, but not helpful in a surgical setting). I have a history of opiate and benzo dependence, so although I no longer use these meds, I have a high tolerance due to previous long term adult use. I seem to have a low pain tolerance, but one I really try to use non-pharmacological to ameliorate-but if I AM in pain, I expect and deserve help from my doctor/anesthesiologist. And look, I really do know my body and although I arrived here with bleeding ulcers and a failing pancreas, after 9 years, I’m much better. (This is where my fascination with medicine has really helped, since I knew my doctors had no time for researching my issues. I have five daughters, the oldest of whom was born with significant handicaps. Research was something done in labs or libraries. I to did all I could educated myself on a syndrome our daughter never had. A world renowned geneticist made a 3-4 year long mistake, and when he told us, it made me realize yeah, even world renowned/highly educated people make mistakes. If I tell a doctor a potential pitfall in surgery, and I’m ignored, and bad things happen? That just happened, and a routine pericardiocentesis turned into open heart surgery, and three months later, I’m still pretty resentful. I seriously did mention this particular outcome had happened twice before, that post op internal bleeding is an issue. Worse yet, I was ignored or gaslit for the first 90 minutes in recovery, and literally was bleeding out while they were implying I was being kinda high maintenance. That the doctor later apologized did take the tractor off my chest.
I also know if I don’t advocate for myself, I cannot expect any improvement.
PROVIDERS: ask your patient if they want the truth and if they say yes, be blunt. If I gave a kid an IV, and they asked if it would hurt, I told them yes, and would compare it to a bee sting. That usually relaxed them, because they had a pretty common event to compare it to.
Btw? I had to laugh, you sure described all of my pre-op/post op behaviors to a tee. Some of your videos really helped me talk to my doc before my surgery, and helped with my pre op jitters, so even though they screwed the pooch, I wanted to thank you. And as I used to say as an admin, being autistic is no excuse to be purposely rude.
Doctors like you save lives every day through your compassionate care. The US healthcare system can make us feel like we're insignificant and unseen as we make our way through. I'm not autistic or a healthcare worker. I've been in severe pain since November of 2002. Your videos have given me something I lost years ago...hope. I watch every video and want to say thank you.
I'm 61 and I just found out I may be autistic. I got tested about a month ago-in two sessions taking two days-and am waiting for the results; I personally think I am, but am amazed I fell through the cracks for so long!
Because of a car crash in 1981, I ended up having many reconstructive surgeries; because my first-ever surgery was in 1965 at the age of 3, I was fortunately desensitized to the monitors and beeping early on. Personally, I think surgery is something that can freak anybody out, and it's wonderful that you're doing these videos.
My son has Autism and he has my sister with him till he goes to sleep. He can’t talk so my sister I guess asks those questions. My sister says he hates Hospital and he can be very stubborn and very uncooperative. Davey can express himself through self harm like biting his index finger or banging something like doors, Hospital staff and Doctors are informed and are very good with him. I’m am afraid though as my sister and I are in our our 60s, but I shouldn’t be cause his sister is 4 years younger then him and a lot more mature then me, she will make sure Davey is taken care of properly. Davey is 35, he is really smart, but it’s all locked away in his head, even though I don’t get to see him much anymore my love is always with him. Thanks Dr Kaveh for this informative video on Autism Awareness in surgery. My son is lucky enough not to be on Meds. ❤️U Doc.
I raised a son who was greatly affected by autism. Back then it was like all sick children that medicine couldn't cure or at least treat with any degree of success, it became Mom's fault. Yes, it was Mom's fault. That had the effect of removing the child from medical care.
Excellent suggestions. Thanks doc
Thank you so much for this video. As a momma of an autistic kid, I really appreciate the understanding you show. ❤❤❤
You are too wonderful! I wish all doctors were 1/2 as compassionate as you are 🙏🏻
I agree! I found an amazing anesthesiologist after years of being told the pain in my back and legs was all in my head. He confirmed the pain was very real and took the time to get to know me as a person vs someone he saw only to poke needles in and move on to the next person. That group of anesthesiologists saved my life. I was extremely depressed and suicidal. I had no quality of life left because of the mountain of pain that ruled my life. I'm on strong pain medications and found out that I have ankylosing spondylitis on top of crps. I honestly wouldn't be here today without the compassionate care from Dr Annabi and Dr Shiller.
Also, it can really help to have one main contact point in the operating room to concentrate on! 🙏
I was under a procedure about 20 years ago and I asked the anesthesiologist to please turn off the music because it was triggering to me. She turned the volume UP. I felt asleep right after.
😤😷😮💨
That's just shitty behaviour. I'm sorry that happened to you.
Thank you! I'm an adult on the spectrum, and I felt so validated when you adressed the potential surgical complications that is spesific to autistic individuals. I had a surgery before I realized I was autistic, and the surgeon explained that I infact had complications under surgery. I have forgotten what he said, so I watched your video to see if it could help me remember what the complications were.
Thank you Dr, great points. Everyone please keep in mind that not everyone is fortunate enough to be formally diagnosed as autistic. Its cost prohibitive & insurance usually doesnt cover the testing. most autistic people have been diagnosed with high anxiety, depression & other things. Usually, our med ical records and the meds we are on kind of make that easier for OR staff to give that extra care. Thank again Doc. And its up to us, the patient, to let the staff know of any things that may concern us. Thats key.
You hit this spot on! Many people do not have a diagnosis or label, and that is why this should be a universal way of treating patients, within reason of course
You’re an amazing Dr! Absolutely an inspiration! Thank you for everything you do for your patients and for us watching your videos.
(Wendy) so glad to catch a live. Thanks for all the interesting information.
IM SO THANKFUL THERE SRE HONEST DRS LIKE DR ANTHONY.
WITH ALL THIS INFORMATION PUT OUT THERE, ITS NICE TO TRUST EVERY WORD YOU SAY.
THANK YOU 😊 AGAIN
Wonderful thank you so much!
I love myself
Go on with your bad self, girl! 😎
Hope I get a doctor like you for my next colonoscopy! My last one was a nightmare. They hollered at me for peeing myself as soon as I woke up. I tell all my doctors that I'm autistic but none of them ever believe me because I'm smart and verbal. I had a meltdown recently in art class that took me by surprise. I got so frustrated that I had to leave the room until I calmed down. It's not a tantrum. It's sensory overload dude, that causes meltdowns.
Hello doc ❤thanks for this video. Will watch now
Ketaimine therapy has helped me so much..off topic i know...back to learning. Thank you
I'm so happy to hear how much it helped!
Dr K I wish the Head of UPMC St Margaret's Anesthesia department should watch your videos
My son is high functioning autistic, so I shared this video with him. Thank you for the great information!
Thank you for all of your helpful and sensitive videos. I have learned so much. I really agree with what you said at the end of your video in that many of the things you do to help those on the spectrum are helpful for all. I found that with teaching. Many of the modifications/methodologies that I used were just good practices for all students. Oh boy, could we use more doctors like you in this time of great distrust due to hospital protocols that hurt people and doctors that denied patients medications and care with C19. God bless you!
Dr K when I had my second turbinate reduction with my favorite Sleep ENT surgeon Dr Ryan J Soose I didn't scream when the anesthesia meds went through my IV
Thankyou for bringing up the comunication issues post anasthetic. I had limited verbal ability for 18 hours post op, the best care I had was in recovery where it was calm and low light (and not expected to verbalise) whereas it was a lot harder on the ward where at least some of the nurses made no allowance despite having been told in advance. The anasthesiologest i had was briliant though and went into mothering mode which helped beforehand.
I had a shutdown event post surgery (my normal responce to truma of any kind) but many autistic people respond to that form of sensery hyperatimulation with a meltdown, this is not a tantrum! While comunication may be part of it a meltdown or shutdown is the result of the brain deciding to check out and stop regualing responses as there is just too much going on. There are lots of good vedios on meltdowns and shutdowns along with how they differ from tantrums by autistic advocotes here on UA-cam and I am shore many of them would be pleased to descuss the perticulers with you.
I appreciate this video as someone who is diagnosed with autism.
Hey Dr Kaveh, just chiming in as another autistic adult. Very interesting and informative, but as others have said, you could work a little on your own understanding of autism. Here's a short list of areas you could improve on:
1) we are autistic, we do not have autism. Autism is not a hat we can just take off and put to one side. (Sort of. We can mask our autistic neurology, but this comes at great cost to our mental and physical health, and really should not be asked nor expected of us, especially in a profession that swears an oath to do no harm.)
2) A meltdown is not the same as a tantrum. A tantrum is best explained as using extreme outbursts to emotionally manipulate others in order to meet your wants. A meltdown by contrast, is a result of overstimulation, and is a form of being overwhelmed. It has more in common with a psychiatric episode caused by acute stress than the wilfull tantrum. The autistic person having a meltdown has more in common with a parent capitulating to a child having a temper tantrum than they do with the child having a tantrum.
3) Autistic people often have problems with not just not having control of their environment, but also of being overriden, overruled, and sidelined by neurotypical people consistently throughout their lives, which can be a big source of trauma in their lives. This can result in a distrust of medical professionals, who, on the whole, are terrible at listening to autistic people and taking what they say at face value. A large part of improving outcomes for autistic patients is establishing trust with them, and placing a greater weight on their words rather than their reactions.
4) Autistic expressions of pain are often very different than those of neurotypical people. That pain scale with facial expressions simply isn't fit for purpose with many autistic people - we can be experiencing a 10 in pain, and still be more lucid and aware of things around us than neurotypicals may be. At the same time, we might express distress that far outweighs the pain others perceive an injury to be causing. That can be because we find that pain overstimulating, or because we feel that pain more than might be expected by others. This is highly variable among autistic people, we all have processing differences in regards to pain and proprioception, and these need to be considered when working with autistic patients. To give you an example, I dislocated my facet joints at L4/L5 some years ago, and the pain and injury were severe enough to be causing neurological symptoms such as dizziness, nausea, and numbness in my lower extremities. However, I was still talking mostly normally, though I was no longer moving or sleeping normally. The doctor misdiagnosed me, partly as a result of my being able to appear normal, but I was simply at a level of pain that I couldn't even process it anymore, and was on the edge of autistic shutdown.
5) Autistic shutdowns are a phenomenon where an autistic person withdraws into themselves as a result of stressors. For additional reference, look up flat affect, as this is a common element of autistic shutdowns.
Great video Dr. Anthony!
Autistic adult here. After all my minor health issues were denied from gaslighting medical professionals for more than 2 years, and after serving almost my whole compulsory conscription, only 12 days before getting discharged, I ended up getting extorted into a spinal fusion I didn't need, that ruined my whole spine. They literally lied about every single thing imaginable (even lied about whether I would be able to leave on my own or if I would need someone to get me), played some kind of torture with my steadily swelling IV that they refused to change for 3 days, always trying to "just get one more through before switching", and they only did it so I wouldn't be able to sue the army for well documented neglect making my initial problem worse. I was discharged unable to work, walk, drive, etc., making a courageous recovery, before ending up faced with the truth that my spine had been butchered.
When everything else had failed and my orthopedic told me that my last hope left was pain management, I was told by the "pain specialist anesthesiologist" (they are the only ones that can prescribe painkillers above OTC doses of codeine in my country and they are operating within public hospital pain clinics as forced to do by the government) that "I am too young to get treatment when I am going to have so much pain for my entire life" (she said that if I was 40 she would treat me), that I am DEFINITELY a morphine addict if I have already been taking a tiny dose of codeine my doctor prescribed as the last resort after 3 months of being unable to sleep, and that opioids do not reduce pain but only make me euphoric and that's why I take them, stating things like "I don't accept that it reduces your pain, it's too low dose so you just take it for the euphoria", "tramadol (which gave me a seizure) is synthetic and that's why it doesn't cause euphoria and that's why you *didn't like it* but you *like codeine* instead", and other such bs that made me realize that I was an idiot just for consenting to go under when "medical professionals" like these are allowed to have multi decade long careers torturing, traumatizing and DEFINITELY killing people, unimpeded, in a country where settlements are unheard of unless it's the government that's asking for it...
On what you said about having as little back and forth as possible the day of the surgery, I even had 2 different anesthesiologists than the one who interviewed me while planning the surgery I had "consented to", that I had never seen in my life, come at me right before they put me under, asking me "If I had looked into why my bloodwork is so *off* and all over the place", and starting an intense and inflexible line of questioning as if I was hiding some kind of a preexisting condition, when it was the plain as day textbook thalasemia trait bloodwork, which he would had known if he had just read ANY of my paperworks. I was just so taken back by what the hell could be so wrong that I have never known in my life until this very moment and I couldn't even fathom that they hadn't read it.
I thank the "pain specialist" for being so adamant about her so obvious bs, cause it gave me the strength to stop expecting any doctor in that rotten system to help me get my health in order, and now I get my own painkillers, titrate my own dose, do tapers and breaks whenever I myself can and not when any idiot who doesn't care the slightest and doesn't get impacted the slightest decides that not getting tachycardia, not hyperventilating and not collapsing and vomiting from the pain while bedridden and unable to even take a shower without screaming in agony, is not worth the chance of a pharmacist thinking less of him as a prescriber (never prescribed more than 60mg of codeine per night btw, when it already only worked less than half the nights without any tolerance in play, and I was in excruciating pain around the clock).
PS: I know that codeine is only meant to be a physical punishment to addicts seeking morphine and I don't even know how many years a liver can survive with the "abuse deterring" paracetamol, which doesn't deter anyone as those who it's supposed to deter either don't know or/and don't care, but I would appreciate it if your medically used/prescribed substances and formulations focused on helping ME/US...THE PATIENT/S...I was disillusioned to figure out that many substances sold in the streets are safer, more predictable and more effective with less side effects and health threatening complications than the so called medications, as long as they are in pure form and known quantity. Maybe if ER pills didn't contain 50 times more Naloxone than they really need, they would resolve OIC without causing the pounding headaches that many patients complain of (clear sign of drug seeking I am guessing...they only want the abusable form to abuse it and it could be nothing but this when we are talking about opioids), but hey...we as patients living with 10x worse side effects around the clock is totally justified, cause otherwise if the meds that are less than 1/5 than what it would take to have a few low pain hours a day were to get diverted or stolen by an addict or a home intruder (no emergency refills on that even with a police report I am hearing, in the rare chance that it does happen) their temporary high wouldn't become slightly impeded. We can't allow that, am I right?
PS2: Everybody is gangsta when he is on youtube claiming anything he wants about the way doctors treat patients, until you have to treat an actual patient. Having seen so many doctors both on youtube and irl I can say with certainty that if you were to see 10 doctors preaching of their fine and respectful ways on youtube, like all of youtube doctors do, before or after having 10 appointments with different actual doctors in real life for an actual health issue you have, you will be a single shrink appointment away from getting diagnosed with something...
I was scared and a little confused but they helped me understand everything and never left me alone and was very kind nice an talked me through everything.❤❤❤.I'm still loopy.I asked them not to give me alot of drugs so I don't feel so bad after and I don't feel so bad.Not scared to go back if I ever had to go again.
My oh my, I just cried of thankfullness and gratitude for the fact that you explained how you(+colleagues) address this topic. How you treat such patients can sometimes even make the difference between life+death. I just don't know if all anesthesiologist+icu doctors are aware of this. A few years ago in the netherlands we experienced colleagues who were at first not known with protocols for auti-persons. Later on after psychiatric info the treatment changed. But this all was such an frightening experience. And therefore I am so glad+thankfull to hear docters who take this issue serious!! I sent a copy of this video to my daughter and saved it myself. If something might go wrong again in this field then I have some good info at hand! 😊😊😊😊😊🌻🍀
And my oh my, I see it is poor english I've written and also some really big text- jumps: first emotions after watching the video🙂🙃😪🙃☺️
I apologize for going off topic but can you do a video covering anesthesia for a colonoscopy and how it differs from other surgeries please? Thanks keep up the great work!
Wonderful video! Late diagnosed autistic adult here with extensive surgical history. I wonder if they knew I was autistic before I did!! I carried a rabbits foot charm for tonsillectomy and kept pulling off the pulse ox! Lots of CYP450 mutations and altered processing.
Impressive, all the best Joseph
Thank you so much 😊
Very interesting thank you Dr. Kaveh
I'm not on the spectrum, and I've had just 2 surgeries in my life (I'm 75). Both of them were knee replacements (each leg; 10 years apart). In neither case did I awaken in the OR. I awoke in my room or in recovery.
Excellent information too pass on .
U are great Dr. K!! I'm autistic & don't have probs w surgery or OR"s. Trained in medical records & I find hospital environ is cool!
LOL, I thought this was going to be more along the lines of "do autistic people tend to react more strongly to anesthesia?" or other physiological differences. I suppose that probably hasn't been looked at in depth. I do know from experience that both my dad and I (suspected and diagnosed with Autism, respectively) take longer than average to wake up from anesthesia, though since we're closely related it could have a different cause. I do appreciate the compassion with which you approached this issue. Having grown up in a medical family, I'm more comfortable in medical settings than most people of any neurotype, but it still helped immensely to have my mom there with me when I had to be put under as an adult. Not judging when somebody needs that emotional support if very helpful.
Very helpful!
I had a huge comment typed up on the poll but it accidentally got deleted so I’m gonna start again here 😅
I’m level 2 Autistic and I have been under anaesthetic 3 times so far in my life.
First time was when I was 10 and had to get my arm reset after I had a fracture in my radius and dislocated my ulna bone in my left arm during a scooter accident. At that age I had a phobia of needles and being put to sleep. It was a lot of crying and pushing the mask away and having a meltdown in the operating theatre for 45 minutes. I eventually had some nurses able to comfort me and hold my hand and one with a hand over my forehead as I closed my eyes crying repeating same words to myself to myself. I remember waking up very dazed and confused but relaxed like I had the biggest sleep after being awake for too long. I also instantly cried because I had to have a cast to last my elbow and I didn’t like how restrain it felt and thought I was just getting one below the elbow.
Second time was when I was 16 and was getting my wisdom teeth removed. I was better but still was scared of needles but now more scared of seeing the mask than even having a needle. Which weirdly enough this started to help me get over my fear of needles and now I am fine with them. I had a panic attack and wouldn’t let them touch me and was crying. The surgeon had enough and told me with a lot of anger I could tell “I have so many other surgeries to do today if you’re going to waste my time I will leave and do those ones and you will have to come back another day and pay again for it” I became nonverbal and more scared, I’m not sure if it was a nurse or the anaesthesiologist because this is where my memory gets super fuzzy. He tells me he will give me a needle of something to help me ‘not be scared’ I said that’s not possible because I wanted to run out of that room so badly at that moment, he was really gentle and kind I remember looking away and letting him do it and after that…. Everything was really light and I was like floating ?? And I was ‘aware’ but I was too chill to care about what’s happening around me. The surgeon looked relived and that’s all I remember. I know when I woke up I instantly started bawling my eyes out and felt scared and alone and had a nurse comfort me. But also could of been because of how swollen my face was and the painkillers maybe made me more emotional ?
Third time was recently at 22 when I went in for my endoscopic carpul tunnel release surgery. By now I am not scared of needles in fact I love the medical field and am more interested than anything and actively watches and asks questions. I remember my anaesthesiologist asking me questions and I waited in the curtain room outside the operating theatre. I wanted to watch something relevant to what’s around me so I watched “ what to tell your anaesthesiologist before surgery” and it said to mention if you smoked cannabis that day so I asked the nurse if I could talk to him again and I told him and it was all good! I went in and it was quite nervous but more so if the surgery was going to be a success of not. I apparently was out like a light for hours after the nurses said they didn’t wanna wake me up.
We autistic people are not children
What we mostly need is the time and space to adapt
In my experience the hospital rushes everything before the surgery and you never get any time to adapt.
For the after surgery, I want to be back in the normal room as soon as possible. There is literally nothing to do in the wake up space and that stimulates a lot. I just want to go back and put my own clothes back on.
And a single room.
Also many of us have a disturbed feeling of pain. I am up and running within minutes after I am awake. I refused painkillers after a big surgery, because I didn't really feel it anyways.
The pain comes when I get home in my own environment.
I had a pretty traumatic eye surgery when I was about four. I hadn't been diagnosed with autism yet, and I don't know if I had been diagnosed with sensory integration dysfunction yet. They pretty much did everything wrong as far as sensory issues are concerned. I wasn't completely under for that surgery so I was aware of being, poked, prodded, having something done to my eyes that made them hurt, cold, almost naked (I did not know why I needed to have a naked butt for eye surgery, but had to because some boy did.) , and being dressed by someone else who did it in the wrong order. Then I threw up, which isn't pleasant for anybody, autistic or not. None of the other surgeries I've had were as bad as that one, but most of those have been during adulthood so I can tell people what I need. Keeping my attention off the IV when they put it in is a big one. Letting me bring a small plush to a surgery I was particularly nervous about was another good accommodation.
Great topic 💙👊
Would be nice to not be rushed and have some sensitivity … Thanks Dr K 💙👊
Always important to be prepared and not feel rushed, you're absolutely correct!
I have Autism and i always woke up screaming and in distress. We thought for a long time its Agoraphobia , now we know its Autism. I already told my future Surgeon but im still afraid that im not rightfully accommodated. People i have severe cptsd aswell. I have been told im to dramatic and im a problem by hospital staff , i rly have an hospital ptsd. Its rly overwhelms me already 6 months prior. Also its not a tanttrum , we arent little kids. Its called meltdown or shutdowns. Our central nervous system is overstimmulated and in situations like that we cant rly controll our or stim in the right way.
I'm about to have surgery tomorrow
I'm wishing you the best 🙏
My son who has Autism and ADHD had an IV for sedation for an MRI. He was nervous about the IV, and they put some numbing cream on his hands for about 20 minutes beforehand. So far, so good.
The problem was, he was still in pain when they inserted the IV needle. He was saying it, crying and panicking a bit, and you could see it in his face. No one stopped to listen to him or do anything differently to try to calm him down. They just dismissed it and said “It doesn’t hurt, because we put the cream on your hands.” ….!
Is it possible the numbing cream doesn’t work for him? I’m thankful the propofol had him asleep in just a few seconds after that. But the next time he needs an IV or bloodwork, I’m afraid he’s going to panic.
Does anyone know what can be done to help this?
As someone with both those conditions I can tell you numbing cream doesn't work I screamed the anesthetic room down
Fellow autist and ADHDer here, who has also had a LOT of medical treatment and surgeries and also has the WORST veins in the world, I think. I was in hospital a couple months ago with kidney stones and it took a day for them to finally get a vein to give up enough blood to do tests. I was left bruised for weeks afterwards as they went for multiple spots on both arms, hands and wrists (and several times on each), my forearms, and even my feet - 12/10 do NOT recommend the top of the foot as a spot for IV access. The only semi-decent vein was taken up by the IV running fluids, so they couldn't take blood from that one and even that collapsed after a day.
Numbing cream needs to be left, covered, for an hour to get the full effects and even then, it often doesn't fully work. That's especially true for an autistic person who has increased skin sensory issues (as well as if they're a redhead, which can also make local anaesthetics not work as effectively). It's messed up that they just dismissed him and not only didn't validate his feelings but actively gaslit him about it. There is another medication option - a needleless local anaesthetic "injector" that uses the pressure of carbon dioxide gas to "push" the anaesthetic into the tissues to numb the area without needles. Two that I can think of, from the top of my head, are J Tip and Injex (though I think the latter is primarily for dental work, I'm not an anesthesiologist).
My suggestions would be that, in the future, make sure that any medical staff actually talk to him, validate him and listen to him, and that you advocate for him too, if he wants you to do so. Lying to him that something will be totally painless when it won't is more traumatic for many of us than knowing the truth, that it might sting or pinch a little, and that it can be managed. And also, ask them to provide him or you with the numbing cream ahead of time, so that it can be applied and covered with something like cling film for a good hour before the procedure so that it has the full chance to numb up. You also need to apply a thick coat, not a thin one. It's also possible that you can purchase one type of numbing cream from a pharmacy without a prescription too - that will depend on where you live, but here in the UK, it's usually called EMLA (eutectic mix of local anaesthetics). And if he's still concerned, then after the numbing cream, the needleless numbing is still an option too. It's supposedly virtually painless, even without numbing cream, so hopefully the combination of the two will stop any sharp pain from an IV or blood test going forwards.
It's ridiculous that we should be expected to just "deal with it" because neurotypical people have assumed that our reality isn't real, and so decide to gaslight us over our experiences. I'm so sorry your son experienced that, and I'm sending him a gentle (non-physical) hug.
When my son needed a brain MRI, they gave him Versed via nasal spray. So he was out of it before they did his IV. It was a good thing because they couldn’t get a vein in his foot. It wasn’t til they used this strong light to find the vein.
My son is very literal. He had his wisdom teeth pulled out as an adult. Refused pain killers. When was home I offered him aspirin. He said “no you are trying to make me a drug addict!”
He very smart. Very accomplished holds a six figure salary so it’s very hard for me to support or help him sometimes when he can’t see the forest through three trees.
Taking anesthesia to take out your wisdom teeth or aspirin to reduce the swelling is not trying to make the person a drug addict. But he will hold firm on his opinion
You’re awesome ❤
Thankyou
My son is autistic but he’s totally normal, highly intelligent and goes to one of the best schools in Michigan. He hates having meds that makes him see double!
I'm autistic. I can't stand being touched and am terrified of hospitals. It's a struggle to just visit someone. My doctor just gave me valium and codeine to deal with anything medical on my own.
I had a small dose of ativan for surgery while being awake.
I'm an autistic adult and i can relate on this video. Most surgeries I've had weren't too bad. There were a couple that took place in a surgery center where there was way too much stimuli. The last surgery i had was the first where i had emergence delirium. They thought i was in pain so they kept giving me fentanyl. I was actually having a panic attack because i was choking. I couldn't get the words out. The fentanyl did the trick, although i didn't need it.
Thank you for this! My daughter has ASD and she’s getting her tonsils and adenoids taken out next month and I’m a wreck about how she’s going to act. She doesn’t understand when I try and explain too much so I can’t tell her what exactly is going to happen
Surgery is scary enough little alone being autistic and getting surgery. We had a young autistic patient in our Fusion support group trying to rip their spinal hardware out of their back. The poor kid should had counselling beforehand to prepare mentally for it.
Thank you for trying to make things as comfortable as possible for us autistic folk, but as many others have said, please take some time to watch some autistic people talking about autism. We do not have "tantrums" when we have meltdowns. We're not throwing a tanty because we don't get our way or whatever, we're overwhelmed, overstimulated, and very often afraid, anxious and being talked over and dismissed, or even gaslit. And it's worth noting that ANYONE can have a meltdown with enough stress or stimuli.
Imagine standing at a rock concert, right next to the speakers. Everyone around you is screaming, jostling you, everyone stinks of sweat and day-old garlic breath and is bathed in too much perfume or aftershave, so you can barely get a breath. The strobe lights from the stage are flashing directly in your face and giving you a migraine. You have on the scratchiest wool underwear that you can imagine, with labels that are made from something with razor-sharp edges that are cutting into your skin. You've been on your feet all day, you're physically and mentally exhausted after a 12- or 15-hour shift with no breaks, having not slept properly for days. You're so hungry that you're nauseated and desperately thirsty, as well as dying for the bathroom. You're in pain, your shoes are so tight your feet are losing sensation, and your clothes are chafing every area of skin that is touched by them, while the detergent is making you itchy from a rash.
Now try to imagine having a complex conversation with a doctor who is also yelling - sometimes directly in your face - or alternatively whispering so it's almost impossible to hear. You're already terrified about the medical issue and surgery process, and they are dismissing your concerns out of hand while telling you that you're just exaggerating and it's not that bad, often while insisting on touching you and getting into your personal space to examine you when you're already unable to bear the contact.
Now imagine doing it multiple times before even being taken seriously enough to see the surgeon and anesthesiologist.
Most people would eventually reach the end of their rope in that situation, and that can be how uncomfortable and distressing it be when you're overstimulated as an autistic person.
Far too often, we're repeatedly told that our reality isn't what we say it is, that our experiences aren't real, especially if we're not male and white. We're told our pain isn't real, that it can't be that bad, we're regularly dismissed or talked down to. And while I definitely appreciate your efforts to make anaesthesia as comfortable as possible, it's definitely an issue that you're talking about us having tantrums (not to mention, I've not seen any mention of shutdowns yet, which is an alternative response to being overwhelmed).
From my perspective, the important thing is to actually listen to them. Explain everything. Answer all their questions patiently, and if they are asking the same thing, then consider if you're actually understanding and answering the question they want answered. Communication has to be a two-way thing, but very often the blame for issues gets put firmly at the door of the autistic person, despite the fact that the double empathy problem demonstrates that BOTH people are responsible for ensuring working communication.
I literally had a doctor a few weeks ago tell me that the renal colic that put me in the ER as I passed a kidney stone was just "probably muscle pain from how you were lying because of the stone on the other side" simply because by the time they did a kidney CT, I'd already peed out the stone. Like I can't tell the difference between muscle pain and passing a lump of sharp, hard material through my freaking ureter. The one that is stuck, however? That was there for weeks (at least) before I went to the hospital because I assumed the pain was from my pre-existing medical issues (severe endometriosis, adenomyosis and interstitial cystitis). For ANY doctor to tell me that I don't recognise the difference between a skeletal muscle twinge and passing a kidney stone is just ridiculous. And the fact that I've spent years being dismissed when I have serious health issues - including some with neurological symptoms and such severe central sleep apnea that I now need ventilation and oxygen at night because it put me into respiratory failure - for decades at a time, over and over? It's a huge problem and it's exhausting.
I appreciate everything you mentioned but I would like more emphasis on speaking to the patient. I am on the autistic spectrum and don’t have a caregiver. I work full time in IT and am intellectually normal. I would like to be spoken to myself in my case as it is my body and I am a human being. I have a bad experience with this with a children’s dentist as a child. I had a meltdown which paused while I was under and continued on emergence. I got pneumonia shortly after. I am never ill so it had to be the Anesthetic. If I felt like I was being talked down to that would be likely to cause a melt down. I would possibly even walk out.
How do you handle the common meds that a lot of autistic people take with anesthesia? For example, adderall or risperidone? How do those meds and common anesthesia drugs work together or against each other?
There are some important considerations, mostly interacting with sedative properties of anesthetics and the duration of action of some neuromuscular blocking agents
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As a high functioning autistic adult, I found my experiences in the operating room interesting. I am sensitive to certain scents and bright lights, but for the most part manage fine in this scenario. When the anesthesia is administered I do feel the urge to panic (sensitive to needle pain, etc.) but thankfully I blank out shortly thereafter before it can really set in and mess with things. The most interesting thing of all is the effects of anesthesia after I wake up. My mind is firing on all cylinders all the time whether I want it to or not, but for about a week after surgery I notice a drastic improvement in my mood and stress levels before I inevitably return to normal. It seems to have the effect of calming me down in the early stages of recovery, almost like a reset button. Is this just a me thing? I want to know if I'm alone in this experience.
For some reason I can't get notifications. My question, is it out of the question to request no not to be put under or given any pain control when having a hernia repair. Willing to use a tens unit but no drugs.