Total Empathy and support Lilly. You are so incredibly brave sharing your story. So many similarities with the freeze episodes. Our Asperger's son was diagnosed with Catatonia back in 2019. He was hospitalised due to not being able to eat and drink - couldn't process anything. He wanted to eat, but physically couldnt. It was scary. His focus was on worrying about everyone else's life, from an ant to a homeless person. He has made incredible progress with aids of meds, NLP therapy, mindfulness, sensory time, OT support. His professional team who diagnosed the catatonia have been totally incredible with their care and support and explaining stuff. He is gradually re-learning how to do the basics - brushing teeth, putting his clothes on, stepping into bath, executive functionining, eating, drinking etc... You are an advocate. Hope you are having as much as a fulfilling life with as much support as possible.

@newrose24

2 ай бұрын

My daughter is 20 and she's autistic. She's catatonic. On and off. She will stand In Place rock sideways while scratching her siides. And also stare off space

I am experiencing this right now. It is so scary when your own body fails you. Thank you for sharing your story and helping others like me feel less alone.

You just changed my life. I didn't know I was suffering from this and that it was getting worse and worse and now I know what I tell people is happening.

Thank You for this video my 18 has experience the same thing. It completely puzzled me because catatonia is associated with other mental issues that he did not have. You are giving a lot of clarity.

@LillyAlive

6 жыл бұрын

+Hesma Stephens I'm glad this information was helpful! I am still running into issues with doctors not yet being able to see catatonia as something that can happen outside of schitzophrenia. But time is on our side -- more studies and efforts to educate medical professionals are happening, so there is deinitely hope for the future.

What are some examples of what a subtle experience of autistic catatonia might look like that might get overlooked?

Thank you so much for sharing your story. I have a son who is 15 and he has autism and recently had some strange symptoms that caused me to do some online research which led me to information about catatonia. I have yet to find a doctor who will recognize his symptoms as catatonia because a lot of doctors just don't know enough about it in connection to autism. I am very grateful to people like yourself who share and bring awareness because this is very much a real thing. Best of luck with your treatment, you seem to be doing great as far as I can see in the video.

@LillyAlive

6 жыл бұрын

+Shauna Ruiz Thank you! Best of luck to you as you pursue the proper diagnosis and treatemnt for your son.

I am a mother of an autistic individual. I have been looking for answers for 5 years about why this was happening to her. Thank you soooo much for sharing this.

Thank you. My son, 27, has been struggling with this for years, only now diagnosed. Your video is so helpful.

Thank you so much for telling us your story!! Two months ago I found nothing in my search for help for my child. This helps so much. I'm sorry you had to go through all this for our benefit. Yep, we get to learn from your suffering. As so little research is done on this subject, I believe that mindfulness, stress management training, and cognitive behavioral therapy may help. My DoTerra friend Gail Edom came up with two sets of oils that helped my child significantly in the past. I've read that Catatonia may be brought on by stress, and college can definitely induce stress. While I've tried and to control and safeguard my child's universe, I believe my child needs to learn her own coping skills. Stress does and will happen despite all any parents efforts. It's just frustrating that so little is know about Autism Catatonia, as of yet.

@LillyAlive

6 жыл бұрын

+Litter Mates I'm curious to know what oil blends you've found work for you? I'm always glad to share my story. Since Autistic Catatonia is still so unknown about, I'm very passionate about sharing my experience and what I've learned about it to help educate and someday help change the landscape of how it is percieved, diagnosed, and treated. I've been through a lot with it and if nothing else my desire is to see my struggles make a difference for someone in the same boat so they don't have to weather the same storms I did. Stress is absolutely a powerful trigger for catationia. Because it is a neurologically-based response, and because autism is notorious for issues with the nervous system (meltdowns being an exaggerated fight-or-flight response and such), anything that activates that response in the nervous system has the potential to trigger that response. my favorite way of explaining it is that meltdowns/shutdowns happen when the fight-or-flight response is activated, but if you dig into the details, we actualy have a third response, fight-or-flight-or-freeze, and catatonia is the freeze response. I really hope you have some breakthroughs in getting help for your child.

Oh my goodness! This is what I've been having. I can't find any one to believe me even when they see it happening. I'm afraid to go back to hospital.

Thank you for sharing! I have catatonia due to bipolar 1 and so much of this is familiar to me, even though we have catatonia for different reasons. It's a scary experience for sure -best of luck!

@LillyAlive

6 жыл бұрын

+Jordan Lofton It's so encouraging to hear from someone else with Catatonia. Hang in there, my friend!

Hi Lilly, thanks for sharing your experience! Just found your channel and found this very interested, I have shutdowns that I freeze, and just learned about Autistic Catatonia and trying to understand more about it... I see you don't post for a long time and I am wondering how you are at this moment, hope you are doing well!

I have a lot of moments where i verbally responded to something without knowing it, mostly when someone asks me to do something and then reminding me of it or complaining a bit about it. but i didn't realize i answered when they said it. one time i got a bit pissed when someone was looking through my jacket, apparently i told them i had pain relievers in my jacket and that they could take it. makes sense but don't remember saying that. and often comes to the realization that i haven't been listening to someone so i tell them i wasn't listening, i was probably busy watching pain dry or something. or just shake my head until someone asks me if i'm ok, kind of wakes up looks at them and tell them i'm ok. catatonia sounds slightly relevant, dunno, other people with ASD seem more responsive than me.

I was sad when I saw my son in a catatonic like state. Hes only two however schizophrenia is also in my family so it kind of hit my heart. This gives me hope though.

@Beekoo100

Жыл бұрын

Autism and schizophrenia. Have long been confused with each other and autistics were often thought of a schizophrenic in the 50s and 60s and institutionalised. It’s not to say that your family members don’t have schizophrenia but autism and schizophrenia can cooccur usually and very high IQ and those of complex sensory profiles that have synaesthesia. So an overload of nervous system that’s autistic may develop mental health if you have a genetic predisposition of schizophrenia in your family. So there is a relationship. A lot of studies are now showing that schizophrenia, autism, OCD ADHD, bipolar and anorexia, all share the same genetics. So it often is quite complex and autistics can often have complicated mental health as a result of stress, trauma and content them into responses like this, if they’re nervous systems are wired that way neurologically. Same as epilepsy and autism are linked together. Dense brain wiring motor disorders can result in non-speaking autism profiles, but motor control. Issues can also have complex presentations like autistic catatonia. I have seen a lot of milder cases as a therapist and I’m also personally have a lived experience of being diagnosed autistic. My son has autistic catatonia when he’s really stressed or severely tired and overloaded, though, it is more mild. He has been diagnosed with a developmental coordination disorder or motor skills, difficulty which results in dysgraphia, difficulty writing dystonia, difficulty with muscle, strength and fatigue. That is a permanent condition that affects coordination. He also has dysautonomiam which also gets called pots, all orthostatic intolerance which is a condition she mentions in the video that affects the regulation of your heart and blood pressure and as a kind of wiring. So this can affect catatonia also. In short, autistics, often have many cooccur conditions that are on diagnosed that we end up having to problem solve ourselves. It maybe that autistics with catatonia can develop schizophrenia when under profound stress so understanding sensory needs is very important and how to lessen the impact of things at a stressful or take them out of the life completely.

This was so interesting, thank you for being brave and sharing. Im sure this will help people. If youre ok sharing, would you mind naming the medication or class of medication? Also do you have any resources to help someone whos expiriencing these symptoms to distinguish between autistic catatonia and disassociating? Thank you :]

To think you'd have to go full catatonic to get proper med treatment just sucks. Just "to prove" reason to prescribe meds. SMH. I'm sorry you have to deal with Dr s like that, but you are helping others that follow. Thank you for posting. Keep us updated if you make a breakthrough with your dr..

Thank you for sharing your story, I had my disabled son who deals with Cerebral Palsy diagnosed with Catatonia and they did an MRI and they did a spinal cord test. They have him to take 3 times a day Lorazepam medication. Tomorrow he will be discharged and as a parent I still don’t know what to do

Hi! Your story is life-affirming. What is the first step to seek treatment? Can you share the name of the medication so I can research it? Thank you so much for this amazing video.

Were you able to get your Autism diagnosis? This is a fantastic video. Thank you so much for posting it

Yes I have/have had some similar issues but they are put down to cPTSD.

Thank you for posting this up. I have autistic catatonia too. A question have you have ever had treatment from a speech and language/therapist to help you when you go non speaking. and also how did you learn sign language when you are non speaking , like are you still able to use yours hands. with my autistic catatonia im unable to use my hands to sign at all. so I have a speech device but I cant always use that either. we have a system in place where I am given two options and I tap the hand with the option I want, I also use eye blinking to communication, one blink being no and two blinks being yes.

I’m just learning about this, my daughter is 29 and autistic, she stopped talking two years ago aft r the emergency room gave her haloperidol IM injection too much too soon and ended up in the ICU WHERE THEY GAVE HER SEPSIS AND PNEUMONIA AND ON A VENTILATOR. Could this be the reason for her not speaking or showering and brushing her teeth? She has not said a word in two year, where as she had always spoke all her life. I have not been able to find one doctor who is qualified to diagnose and treat her.

My daughter is 16 and after 3 trips to hospitals and over 100 labs. I believe my child has this. She is being treated with Lorazepam three times a day for this but think the dose is too low. She is only one 3.75 mg per day. She was a high functioning autistic child and thriving and went non verbal as well and been misdiagnosed several times over 9 months . She is on A bilify( antipsychotic) I believe it should be stopped . What is your total dose and how often do you take it. My daughter is in there and I want her back please

Curious how you’re doing now. Hopefully well. I diagnosed myself also. AAMOF it’s the catatonia that caused me to figure out my autism. 53 years old, and it wasn’t enough to abuse me by using my diagnosis since age 9 against me before my father died in 2016… They all had to steal the one income-producing asset he left behind from me and my brother by using my brother’s greed (convincing our dad to make my death his payday) to rob us both blind. Brother and dad both were too stupid to figure out that our aunt and uncle used our dad’s revised will favoring my brother against us both. So of course fear for my own survival induced catatonia. And that’s not all I figured out. Postpartum psychosis (wish for the child to become “unborn“) is neurogenic to autism (in those who aren’t turned into SIDS statistics). If you’re autistic, are you also a stomach-sleeper? Yeah, so was I until a double hernia surgery broke me of that habit. It’s a defensive posture against a scowling or menacing mother (and also a means of looking away). And a position from which asphyxiation can be achieved without strangulation. Doesn’t have to see her child’s face as she does it and she leaves no ocular petechiae behind. Getting a diagnosis in childhood induces Munchausen sequelae because it forces her to stop ignoring the child’s needs. See “autism fever effect” if you think otherwise. So the bargain with herself is we become her proxy and she becomes the martyr savior of a disabled child. I mean fuck, just read your comments: “Total empathy”🙄🤮 as one tells you about her son being concerned with other people’s lives (like her poaching his life e.g. being in here commenting on his behalf didn’t groom him to self-defeating selflessness). Medicine doesn’t tell diagnosed autistics they have developmental incapacities to enter into contracts (including marriage) in early adulthood because pretending ASD is a pediatric and adolescent diagnosis protects treating clinicians who failed to diagnose from negligent malpractice liability. So absolutely young adult autistic female unpreparedness for the emotional shock of motherhood is an inevitable predisposition to behavioral heritability by the same psychopathology. It gets even better. Of course medicine knows the chromosomal impossibility of transgender delusion is an attachment strategy in toddlers rejected for their physical sex and adolescents rejected for their sexual orientations. The specialty of psychiatry specifically also knows autistic females internalize displaced rage toward their mothers as self-hatred. And surgery knows undiagnosed autistic females are resorting to transgender delusion as a SEPARATION STRATEGY. So that’s why they’re in such a hurry to accept the invitation to sterilize undiagnosed autistic females (while they’re still living under the roof of the inducing parent, since it often resolves after they finally get away). It’s 4:1 male to female because disturbed maternal psychopathology sees others as extensions of itself, so has a harder time seeing sons as Mini-Mes. Almost certainly autistic catatonia is getting misdiagnosed as early-onset dementia by quacks who think their misdiagnoses are confirmed after misprescribing contraindicated antipsychotics that hasten decline. Pretty sure autistic catatonia also presents as so-called Diogenes syndrome. And I think Parkinson’s is probably end-stage autism, too. Intraspecies predation (irrational barbarism) toward culturally-approved ideological outgroups (usually by way of fixed religious or political delusion) and toward blacksheep children is the inevitable consequence of civilization itself obviating our omnivorous need to hunt. So our mothers regulated their masks of sanity at our expense because everybody’s a psychopath to somebody. The Abrahamic filicidal impulse (toward Ishmael, which didn’t mind using Isaac to overcorrect damage to Psycho Abe’s reputation from schwarzeneggering his maid) on Sinai during the era of animal sacrifice shows us that child sacrifice is endemic to civilization. The reason so many need guaranteed third-party forgiveness in an imaginary next life is because they’re remorselessly doing unforgivable shit to each other in this one. Seems to me being too stupid to figure out any woman in Nazareth who concealed her infidelity with a story about getting knocked up by an angel could’ve induced her illegitimate proxy child to a messianic delusion is less of a reason to deserve the big surprise waiting for their immortality fantasy than the tradition of agnostic entitlement to exploit the goyim whose ancestors were only able to put themselves forth as the so-called “chosen people” of their made-up god for having a front row seat to that. Smart enough to distinguish a grave robbery from a resurrection but too stupid to figure out AdolfH’s master race obsession was an attempt to steal the act of the original self-appointed master race (who OBVIOUSLY must’ve cruelly excluded him in childhood as a quarterbreed). Was also the external representation of HIS OWN autism Hitler used Hans Asperger to annihilate. Duh.😉 Our autistic gullibility / naïveté is a GROOMED trait. AND THAT CAT NEEDS TO STAY OUT OF ITS BAG. Autism is an evolutionarily adaptive ego postponement that gives us time to physically mature before escaping abusive parents to go raise ourselves. Autistics need to STOP FORGIVING THE UNWORTHY, because extraction of undeserved benefit-of-doubt (from US) is what props-up the very facades our degenerate parents used against us. So the best thing any of us can do is GROW UP (to avoid early-adulthood betrayals inducing our developmental delays to ASPD or BPD). Is what it is, fellow survivors. Their turns to be the idiot begin now at whatever point we individually stop being that to them.

My son is going through this right now and the doctors are not yet helping. What medication is helping you?

Hi which medication do you take so that I can ask the doctor. Can you let me know please?

Hello Lilly, You are an amazing speaker. Our son has severe Autism and suspected Catatonia. He is 15, non verbal and going through hell and we with him. Can you please tell me how I can contact you with more questions? Especially the medication - is it Lorazapam that helps you? Our son is in an isolation unit at a psych ward and many meds are being trialled. So far only Lorazapam has made a positive difference but they don't want to give it to him for fear of dependancy. It is so so so hard. I must say NOTHING of what you've talked about sounds unfamiliar...

@LillyAlive

7 жыл бұрын

Juliana Sigut I'm sorry it took me ages to respond. I'm sorry to hear what you're going through, I'm glad I can help in some way. send me an email at jtporter05@gmail (dot) com, I'd love to answer your questions

@LillyAlive

7 жыл бұрын

Juliana Sigut and to answer your question, I am on Ativan and that's basically all that works. I can't function without it

@KarthikaShajiUSA

Жыл бұрын

@@LillyAlive i m watching this now while i was searching this subject . My son showing strange behaviors and not yet fully diagnosed

@samsistudios

9 ай бұрын

Our son has Lorazepam - it really helps. Reduced his sertraline to neglible. We are anti meds - but Lorazepam is a God Send. You can give a changeable daily dose depending upon activity (without side effects like SSRIs)- check with your GP max dose for your child. He has been on it for 4 years now.

Hi Lilly, you don't mention the medication. Are you referring to lorazepam? Thanks.

@dandelionsystem

4 ай бұрын

She probably is it's the go to first line medication there's a second one that is experimental but it's not close to as effective

How are u now ? I may have autism catatonia not sure . Dr sahw has a book she uses holistic approach meds last resort. Can relate to some your symptoms.

I believe my son may have this. It seems like horrific OCD. and sensory overload. My son is autistic amongst a few other dxs. He had dystonic like posturing and his biggest burden is 1.Touch then 2. Noise. It's breaking my heart and I'm terrified for him. He sweats, holds his breathe and recently started grunting. Muy Weston is, does it hurt when you get stuck?

@LillyAlive

6 жыл бұрын

Vida Garcia it has never been painful for me, although what I suspect is happening is he is straining against/fighting with his body to do what he wants. His brain is sending the right signals and his body isn't responding. He may be feeling like if he forces it, pushes hard enough he can break out of it. The grunting may be part of that effort he is exerting, or simple frustration that he can't do what he is trying to. My suggestion would be to help calm him, if possible help him understand what is happening and that it's not in his control and he can't force his body to respond. Definitely helping him stay calm will also help it be less severe. I am speculating from what you've shared, I hope it's helpful. If you want to discuss this more in detail, please email me (in description) and I'd love to talk more in depth about it if that's what you'd like. I try not to do specifics here to honor everyone involved. Feel free to email me! :)

I have autistic Catatonia, if your on Facebook me and a mother with a son with autistic Catatonia have started up a Facebook group. Look up Catatonia in autism on Facebook and request to join. It’s hell having this condition.

My son has Autistic Catatonia. He is 29 years old. He is not on medication but we have tried many things. What is the medicine that is working for you? We have tried low doses of lorazepam and that made minor changes. And the longer he took it we needed to increase the doses until it was unsafe. Please let me know what you are taking.

What is the medication

ihope you dont lose your meds i have autisticcmeltdowns id be in trrouble without my meds

I would love to know the name of the medication please? My teen is suffering from this too! Thanks for the video and being so open and honest!

@alisonwiles3132

5 жыл бұрын

Hi Melanie, I help to run a facebook group called Catatonia in Autism so please try and find us and we can help! My son is 22, developed autistic catatonia at 17 x

@akashiluddi

5 жыл бұрын

The medication is called lorazepam brand name Atvian

@melanielynnrkein6231

3 жыл бұрын

@@akashiluddi thank you!

What is the medication my son has this.

Hi Lilly, I am following your story with great interest. Our son is 23, he has autism, non verbal, diagnosed catatonia and epilepsy. I help to run a support group on facebook and it would be great to connect with you there. Its called Catatonia in Autism x

Well. That’s a lot to realize about myself.

Quick question is the medication Ativan?

@joybird144

4 ай бұрын

I’m experiencing symptoms of catatonia really badly. They gave me Ativan once at the ER and it helped so much.

Thanks, I sent a email

Hi, I am Andrew, I am Autistic, I have AD HD OCD

U look great

Can't hear a thing

I have to come back and watch this fully. My son had catatonia 3yrs ago. Lots of issues and he not well at all and not motivated. I just found out that he is entitled to some help from the Government. Currently they give an antipsychotic drug called Abillify and I am not happy about it. I think extreme stress causes these debilitating illnesses. Why is every one becoming autistic all of a sudden?. You look and appear so normal but I am sure anyone would become catatonic if subjected to all the stress. We were normal people before. Now we have conditions.

Hi Lilly, I’m so sorry for your painful experiences. My son who is 27 developed Autistic Catatonia when he was 22 yrs old. Can you please tell me, if he is « stuck » and we are on a time schedule, is it just making things worse to try to coax him to move along or repeatedly prompt him? Sometimes, however, the longer he remains stuck, the more he seems agitated (is sweating and anxious). What is the best thing to do to help him when he’s stuck? Thank you so much for sharing your story!

Stop eating? Great! I try (without success) to lose weight for a very long time. Perhaps Autistic Catatonia would be a solution for people like me!

@user-jr4id8wj3m

5 жыл бұрын

What a ridiculous thing to say. I have just watched this young woman describe her life and im sure she wouldn't wish this upon anyone. An extremely strong, courageous, brave intelligent young woman. Living with a scary, rare and very real condition. I would like to thank her for sharing her experience and would love to see a part 2 ..