What is Autistic Regression in Adults?
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- Опубліковано 16 вер 2024
- Autistic regression is a phenomenon where a person with autism experiences a loss of previously acquired skills, such as language, social communication, or self-help skills. This can occur at any age, including in adulthood, and can have a significant impact on an individual's daily life.
In this video, I give and example of autistic regression in myself, the potential causes, and the impact it can have on individuals and their families. I'll also discuss some strategies for managing and supporting individuals with autistic regression.
If you or someone you know has experienced autistic regression, or if you are interested in learning more about this topic, then this video is for you. We hope that it will provide helpful insights and information to better understand this complex phenomenon and how to support those affected by it.
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I’m 51 female. I have suffered from CPTSD all my life. Undiagnosed ADHD and now Autism. Watching this video made me realize this is what I’m going through right now too. I think I was able to do all I did before, because the constant trauma drove me to try to be the most successful person as I possibly could. Now I’m bottomed out. I lost my business, my home, my car. I’m in temporary housing, on permanent disability. The only thing that keeps me going are my pets ❤ I’m alone. No family or friends. No one understands me because I couldn’t understand me. My masking and “personality stealing” was who I thought I was. Working on finding myself. ❤ thank you for sharing your story. Your are doing great!
I'm so sorry, so many of us just kept pushing until our brains and bodies said nope. Many of our community are in situations that put them in dire circumstances. I hope circumstances start changing for you as you learn more about Autism and trauma responses. ❤️❤️❤️
Sorry to hear about your struggles. I really like how you expressed it that the trauma kept you going. I bottomed out as you say back in 2016. I was an IT Consultant and programmer at the time, but haven't worked a day since. I hope things work out for you so you get some light and joy in your life! ❤
Sounds familiar! 39F, 13x Ironman finisher working in big tech when I started having medical problems and struggling to keep up. Early retirement wasn’t in my mind but here we are, creating our new normal.
@@SideB1984 I can't swim very well, and I can't afford a bike. I picked up running back in 2018 and have finished two 50Ks and a backyard ultra capped to approximately 50K that one also. I hope to learn some swimming and get myself a bike one day and do at least some shorter Triathlons.
Hi, Michelle. I'm sorry to hear about you going through this. I'm a 71 year old female Aspie, and I understand exactly what you are talking about. I "bottomed out" at age 62 after working at the same toxic workplace for 22 years. I intended to go back to work, but just couldn't. There was absolutely nothing I could do to help myself for about 4 years. Thank goodness I could take early retirement at that point. It still left me basically destitute, but being financially wrecked was actually better than trying to hold down a job again. I'm alone, too. I talked my landlord into allowing me to get a cat due to Covid, so I wouldn't be SO alone. So...try not to *feel* so alone...there are people in the world who DO understand you, and have many of the same experiences you do/have.
I gotta say, 9:00 hit hard. As a black female with ADHD and Autism, it's been hell to unmask. The conflict between who I thought I was, who I always wanted to be, and how I've always managed to cater to both parts is heartwarmingly heartbreakingly, absurd. What I need to be myself now..is....i don't know. I feel like I'm asking for help and the answer I keep getting is to rely on myself, and I can, just not right now. Is that okay? Can I ask for help damnit...can I need someone to help me for a bit today or for the next few weeks, so I can have my shit together for the next few years? If not, then can I lay down on this floor and look at the ceiling for a bit and not have to explain why that's gotta be what happens next! No? That's gets you almost arrested and put on a psych floor only to be told, "you seem too smart to be here"? Okay, fine,....I'll just figure out how to unravel in a more socially appropriate way. ARRGGHH!
My interactions have become so transactional; my friends and family need my mind but no one can nourish my soul; I can't remember how to do it myself and I am wilting as I circle this drain, trying to bail the water out of my ship. Everything feels like I need Disney song and dance to even begin to think to try. Everybody is looking at me like I've lost my mind, that I have "turned into" something....I know they want to say weak....they knew me as strong and tenacious. But my strength comes at a price and I no longer have the oblivious autistic moxy and base game brute force to make my dreams come true. I need time to review what time has taught me, but I have to keep going or the things I built so far will fall apart. I am tired, drained, and need help. I'm not weak or stupid. I just need a moment; I need to know I'm going to be okay. I need to know when I can set this shit down for a moment and breathe. ....I feel like. Little bits of me are flaking off, like paint. I'm so tired.
This was so beautifully written, I understand completely. I hope others see your words and we will see that we aren't alone. That doesn't really help, but maybe it at least makes us not gaslight our selves. We do just need a moment or maybe more...
I'm so sorry, I wish and hope you find the help that you need for your specific circumstances and needs. I've been in the middle of ADHD burn-out for the past few years so I relate to some of what you wrote. I don't have any real advice, other than be gentle and patient with yourself, at least show yourself the same level of compassion and grace that you would show to a close loved one if they were going through it. And it's ok to take up space in a way that others won't understand. 99% of the time neurotypicals just won't understand by default, and it does hurt. But you are allowed to take up space in the way that is right for your needs. You are allowed to fall apart. Sometimes we have to fall apart in order to rise again someday. Sometimes it's in the falling apart that we find ourselves and learn things about ourselves, that we may have otherwise missed by trying too hard to hold our shit together. Sometimes allowing ourselves to fall apart IS the best thing we can do for ourselves (so long as we don't end up causing **ourselves** more harm than good). But I also realise everyone's situation is different and some people are unfortunately just not able to fall apart in the way that they need without societal oppression to their falling apart. Society sucks.
I wish I had the answers you're seeking, but I can only offer my own jumbled thoughts and input based on my own lived experiences. I don't have any real answers for you, just trying to show emotional support for a fellow neurodivergent. 🫱🏻❤️🫲🏻
This moved me "how I've always managed to cater to both parts is heartwarmingly heartbreakingly, absurd." The internal war is so painful.
And this, makes me thing my mom also was ND:
"Everybody is looking at me like I've lost my mind, that I have "turned into" something....I know they want to say weak....they knew me as strong and tenacious"
Before finding all this information I tought I was "turning" into my mom for sure. She went down the spiral and I've always been affraid of going through the same thing.
I know it’s just words…but I completely understand you. I just found out I am autistic at the age of 31 when I’ve spent my whole life “trying to figure out what was wrong with me.” I was always told I was “too much.” Then I would shut down and be asked “what’s wrong, you ok?”
I mainly went through my 20’s using drugs to help keep that mask on, going to parties that even while ON DRUGS the overstimulation was too much, unless I was so sedated that I didn’t know where I was. I abused drugs from 18-26 in a very serious way, because after high school I realized that the only reason I had made friends was because of being stuck in grade school together. Once out in the “real world,” I realized how “weird” I was and what was wrong with me that others retained a lot of their older high school friends or continued meeting friends into adulthood, creating their networks.
I, on the other hand, was personally told by the one person I considered my best friend (I’ve only ever had one really close friend or no friends at all my entire life) that every time he tried taking me out with him to hang out, that people would always mention how “socially awkward” I was, when in reality I was in overly stimulating situations and I already have a hard time meeting new people and doing small talk.
Had it not been for the Lord Jesus Christ saving me at 26 right before I was going to delete myself, I would be dead. Now, 5 years later, I’ve been labeled as strange, ostracized, and even been called a “nuisance” by the deacon of a church I was a member of for 2 years.
I don’t even trust other Christians anymore. I don’t trust my own family anymore. I wonder sometimes when my wife will take her and our children and leave me too.
Why couldn’t I have just been some dumb hick that nobody has real expectations for? Why was I born being “the gifted one” who no one understands, nor even mine own self at times.
It’s so hard. I feel your pain.
Wow this is a really powerful post. I too am a black woman with autism and add ,I hope we can both someday find some peace x
I have instantaneous "regressions" in ability when I am stressed. I talk about my autistic behaviors "popping out" when I am stressed. Things that everyone thinks I have permanently conquered will suddenly re-appear full strength when I am overwhelmed emotionally. As if I had never learned how to overcome them in the first place.
Could you give examples? I’m trying to understand but I don’t know that much about autism.. I know ADHD well but it seems very different…?
@IntegrityMeansAll Well, as someone with adhd (maybe autism idk), I do notice that when anxiety is present, indeed, it is harder to focus
I was diagnosed at 28, am now 31, and I feel like I am becoming less able to cope as I get older. During my assessment, I was told I have intellectual abilities that are in the top 1% of the population, but I spend so much energy just trying to survive that I am not able to do anything with it. I have no idea who I am anymore because my life is so limited by constant overwhelm.
Yep, we can only mask for so long before we crumble, it's why the life span for autistic people is alarmingly shorter than average. Our society doesn't support invisible disability well enough
Have you tried therapy ma'am?
😢 I feel the exact same. Very intelligent maybe called "gifted" at times. Ambitious driven, cannot seem to "catch a break" or become fully realized. I struggle with networking and how easy less intelligent people move up in professional careers. 😫 I haven't been diagnosed yet. Seeking one. But Alllll this explains a lot.
I was also diagnosed as an adult; I was diagnosed in 2015 when I was 29. When I had my appointment, the people conducting the assessments wanted to know why I was there and what I hoped to accomplish with an autism diagnosis. In 2015, I was working on completing my bachelor's degree, and I wanted to get accommodations in college to help me complete my program, I was especially looking to get accommodations with the approximately 20-page senior design project that was required. In 2019, I was diagnosed with ADHD by a different doctor, and in 2023 I went in for an updated diagnosis because I was about to start working on my master's degree. At the 2023 assessment, I was given the WIAT-4, WAIS-IV, and ADOS-2, Module 4. On the WAIS-IV, my FSIQ was 120; I was in the 99th percentile in verbal comprehension, and 93rd percentile in working memory, on the information section of the WASI-IV, I scored in the 99.9th percentile. On the WIAT-4, I scored >99.9th percentile in numerical operations, but I struggled with phonemic proficiency; I only scored at the 4th percentile, so I struggle with being able to manipulate phonemes in words, and I struggle with putting my thoughts into words because I only score at the 12th percentile in sentence writing fluency. I am what they would refer to as a twice-exceptional(2e) in education circles. I know what you mean about spending so much energy trying to survive; I have been masking since I was probably 2 years old, always trying to meet the expectations parents, teachers, and now co-workers, and managers set on me. The past two years were especially excruciating for me because I was working as a sped teacher in a public school, and on top of teaching, there are IEPs to help write, parents conferences, ARD meetings, T-TESS conferences, and observations, etc. I have always been at a significantly younger developmental age than my chronological age, but now after the school year ended everything just hit all at once, and I am having an even more difficult time doing what used to come easy. My interests are things that younger children typically like, but being able have access to those type things is very healing and relaxing. For example, I love practically any show on PBS kids, my primary musical interest is Christian music with children's voices, such as Worship Together Kids, Getty Kids, Cedarmont Kids, Hillsong Kids, but neurotypical people would find it weird for an adult to be listening to that type of music. I am going to need a surgery to remove a large tumor from my spine, and the thought of having to be in an adult hospital terrifies me. I also don't want to know what I want to do anymore, because the thought of being in an office environment gives me anxiety, and warehouse environments are too physically taxing.
Great topic. I'm a licensed architect and a former college professor. i no longer practice architecture or teach in part because of autistic masking burn-out and shut-down. Regression is one way to frame loss of conventional functionality I suppose, but really it's more like "progression".
Our survival depends on knowing we are autistic, embracing our autism, and supporting it. This is the only way we can be healthy, happy, productive people and members of society. Think about it:
We see a child spend hours trying hammer a round peg into a square hole. She's frustrated, crying, and her hands are bleeding, and both the hole and peg are severely damaged from her efforts. So she gives up.
Next thing you know, she's off in the corner stacking lettered blocks. For hours, she's composing color coded poetry with those blocks. She's engaged and happy, even though everyone else is happily banging away at their peg-boards, and hates stacking letter blocks.
Which scenario above is truly regressive?
;-)
I absolutely love this analogy and I think it's a wonderful way to look at it. I think acknowledging the regression (because that's what it feels like from the current trajectory I was on) but then reframing it as now finding my new path is perfect. Fun fact, I went to university for architecture. I got a bachelor's degree from Texas A&M University is Environmental Design which is their architecture program.
well said. I agree.
@@dizilly Thanks - We need to frame autism much differently as a society if we hope to fully understand it for what it is:
Love
Love and gifts that are a burden when not recognized, accepted, appreciated and supported.
“Our survival depends on knowing we are autistic, embracing our autism, and supporting it.” Brilliant-I love this! Before learning I was autistic, I was miserable. I knew I was just surviving, and sometime barely it felt like. I didn’t understand why things were so difficult. I had a great job, was in school earning a biology degree as an adult student and loving the learning, etc., but it was all so hard. I was so critical of myself: lazy, no discipline-if I really wanted it that bad I would work harder right? That’s what all the productivity and self help books said… It was rough. After learning I was autistic, it all made sense! It is such a relief to know how to take care of myself better. To understand why I do the things I do. To know that I’m not the only one who processes things slowly, but is wicked smart (from my husband :). I am now living! And I joyfully tell people when they ask: I am living my BEST life. All because I now know I am autistic.
@@amandabyrne7734 Your comment brings tears to my eyes - I don't know why though, because I'm alexethymic. I think it's because you so perfectly summarize my experience of undiagnosed autism with your words.
"I didn’t understand why things were so difficult."
that just.....nails it. Perfectly. ....and when you say "difficult" it's an understatement. It's impossible. So much of what's required to fit in and thus feel safe in conventional society.
Knowing I was autistic didn't just save my life, it's made it much better. The shame I felt because of career and personal failures were a product of something I had know control over. I didn't know I was autistic. All I knew is that I was different, and that if I wanted to survive, I was going to have hide and supress my differences. That requires constant vigilance, because just one mistake, and you are doomed.
Melt-downs and shut-downs are the result. But the very worst of it was the ANXIETY. The constant nagging low grade terror that stalked me from the day I was born until the day I understood my autism and that I truly wasnt safe in that world.
There's a Radiohead song I cover called "Fake Plastic Trees" The song is a tone poem about artificiality, superficiality, alienation and the exhaustion and sorrow it brings:
ua-cam.com/video/6KScHf-t26U/v-deo.html
...it ends with the lines
"If I could be who you wanted
If I could be who you wanted
All the time....
All the time...."
ua-cam.com/video/6KScHf-t26U/v-deo.html
Society is corrupt and superficial
Autism is deep and true
Do you still feel ashamed about not fitting into the world of Fake Plastic Trees?
I feel sorrow for what was and can never be - along with shining hope for a future illuminated by the light of the knowledge of autism and the gifts it brings for humanity.
I feel nothing but love towards all of you, and wish nothing but grace for your difficult but so very meaningful journeys through this crazy world.
Some day I'll write a song about this
I love being a child again. I feel seriously blessed to have the forced opportunity to reparent myself in the way I needed
I used to buy my kids fidget toys and play with them. Now I buy us all fidget toys. I think this is such an important step for all neurotypes. Follow your own needs, not what society expects of you. As long as you aren't harming yourself or others then just enjoy life the best you can, right?
You got it. It’s incredible. Trauma therapy has helped a lot. I’m giving my inner child what she didn’t get. First I had to find her. Wow.
Wow I need to take this perspective...
I was wondering what that was! I noticed regression during and after the pandemic and I couldn’t figure out why I’ve been such a mess lately. I’ve been telling my girlfriend about how my autistic traits seem to be more pronounced in the last couple of years and she agreed. Now it makes sense.
My daughter was diognosed with autism at 17. Masking finally led to a complete breakdown. We knew as her parents she was autistic since she was 2 years old. Doctor's said they didn't want to label her. She has suffered so much from our system. She went from capable to incapable in about three months. Catastrophic for our entire family. Things have gotten better for her and us now.
Just takes time. Thank you for a definition, autistic regression. That fits so well. You are very smart and a big help to many of us no doubt. Glad I found you. Hope you can keep doing these videos.🥰💜💜💜
I get so frustrated when people are scared away from labels. We label everything in our world but so many people are scared to label how our brains work. Information always equals power. The more you know the more you can accomplish. Thank you for advocating for your daughter. ❤️
Hi! Without going into too many personal details (not trying to be nosy here) could you describe a little more of what your daughter went through?
I'm 21, a depressed and anxious autistic woman. When I was younger, I kept to myself a lot, but I was very confident (in my own a-typical way) and very independent, skilled and driven. As an adult living 'alone' (with housemates but we don't interfere with eachother's stuff very much) with responsibilities and lots of work, I constantly find myself in a cycle of pretty quick and abrupt burnout where I beat myself up mentally, because I'm an adult and I just want to get on with my life! But I feel completely pathetic and worry that I'm going to need to rely heavily on others for support for the rest of time. I don't know if it's just a purely unresolved mental health issue thing, or if I'm just completely overwhelmed and overstimulated. I've never really received much support. Just getting by on self help type stuff. What helped to restore your daughter's confidence (if it was lowered from the episode) and helped her get back up on her feet?
I apologise if this is too personal to ask! Don't worry if you are not comfortable giving an answer.
@@hannahdeards9652 Her life as a young child was pretty great. We had lots of fun. As parents we just raised her to be the best she could. She is wonderful too! She never crawled instead she walked on all fours. She could move so fast by doing that. I don't think she liked her knees on the floor.
She didn't talk till she was three. So we put her in speech therapy and had the hard task of with holding things until she used her words. Potty training was harder with Hannah. She was my third child by the way. So I got her a pretty potty with shelves on each side. She had books to look at. Also I gave her treats when she accomplished her jobs. We would laugh when she tinkled and clap our hands. As a family we all would read books and cuddle at night. We had a bible story book she listened to most nights. One time at a resaurant we were all sitting around a big table. Extended family and friends. Something was said and Hannah began to tell the whole story with same inflection and words she heard everynight. The whole table was rivetted for about 30 minutes listening to her tell the 66 stories of the bible. She even condensed it down. One person at the table remarked how he wanted to see her when she was grown. It was amazing! She wore a little hat, a pack pack and carried one particular toy around at all times. The toy would change out every few weeks but she clutched on to that. Had to have it! There's so much to tell. I could write a book.
Thank you for asking. I could write more another time if you like.
My little sister may be autistic. She had the traits all her life, but she masked ever since she was a toddler. When she was in preschool, she imitated other autistic children in the classroom by hand flapping. So she got screened for autism and the doctors didn’t think she met the criteria because she wasn’t showing all the classic symptoms. The test only diagnosed boys, So she got left undiagnosed. Now she’s only a teenager and her sensory issues and poor social functioning has gotten worse. she’s starting to think she has it and she is waiting for a neuropsychiatric evaluation to happen! I hope she gets diagnosed soon! Because I don’t want her to suffer from the burnout throughout her life
@UCe3QaDVgliyVXPK-EKFkDug What a great big sister you are! Let her be herself around you. Then tell her what you love about her very own and unique personality. I wish my Hannah could have had a sister that loved her like you love your sister.🥰
The shower thing though! Yes! I've been showering for 54 years, but in recent years, it's gotten super difficult. I have to plan them ahead of time and make sure I have plenty of time for the whole process. Once I get into the shower, I'm fine. Getting myself into the shower, however, is like an "impossible task." It makes me feel so weird!
Yeah it's strange how showering has become such a mental exertion for me. I have actually started washing my hair in the sink and separating it from my shower and that has been a big help. Hopefully you can find a way to accommodate yourself too.
Awesome content. This rings so true. It’s like the cage door opens and you realise you are actually a bird that can fly and not a miserable, lifeless decoration.
Beautiful metaphor.... 🐦
I have noticed a huge decline in so many areas that were not that difficult for me before and knew it probably had something to do with my mask breaking/shredding; I feel like I have seriously regressed to it being debilitating most of the time even down to speech. I feel like a little helpless child and it is really challenging to say the least. I didn't fully understand what has been going on with me so this video was very helpful and I am so very grateful for you making it!!! THANK YOU! i live alone with no family, friends or support of any kind which I am sure this only adds to the situation. I came to the realization that I am autistic last November so all of this is still very new to me but finding out about myself has also answered a million questions for which I am most grateful for...I just turned 58 yrs old. This has been and still is a lot to process and it is not easy but at least I know what is going on with me and what and why I have been the way I am. Losing my masking ability last year led to me discovering I am autistic, I believe the mask shredded due to a lifetime of traumas, rejections, abandonment and abuses for which I was no longer able to cope with. I broke completely and the mask completely deteriorated. Now I cannot even mask if I wanted to. This is not necessarily a bad thing and I like knowing that I am who I am now but it is not easy and everyday I feel like a baby trying to learn the basics. Thank you again for this video.
The regression is so real and nothing I was remotely prepared for. I'm glad my video shed some light on what was going on with you too.
I think that as an adult self perception is a big component here and particularly in people who prefer to think "if and then"
Thank you for sharing
I’m an autistic woman. I’m 55 years old and as I have learned that what is happening to me is called autistic regression, I have been so extremely discouraged about my future.
In no way did I want to hurt myself but I sure didn’t want to live to be 80.
I began to cry out to God about this issue. I came across some information about a study that was done for epilepsy in children.
They changed their diet and basically all of the children recovered from their epilepsy as long as they stayed on that diet.
I thought, “I wonder if that way of eating would help this autistic regression”.
I started the new way of eating and after a month, I felt my brain wake up!!!
I am convinced that this works and I thank God every day for showing me what to do!!!
🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼
@@MamasDaughter47 Epilepsy and autism are not the same thing. Diet is extremely important and can help tremendously with helping with certain aspects of autism. There are things that happen to autistic people, like the regression, that happen that is completely unrelated to what we eat, this was the case with me. Due to the events in my life that were out of my control I eventually broke and I believe this was a major cause of the severity of the regression I did and still am experiencing. Again, I totally agree that what we eat plays a huge part in things but we need to be careful to always be aware there are other things that play a part too. I am so glad to hear that by making these changes it helped you so much and this makes sense since so much of what is labeled as food is actually very poisonous and toxic to our entire bodily system.
I’m currently deep in autistic burnout and the regression has been… painful? I get so frustrated with myself that I can’t do the things I used to. I’m applying for disability and I’m very scared of talking to a judge because I don’t know how to explain this. I have a masters degree but getting that degree caused me to “break”.
Thanks for the video! It helps to know other people are struggling
Regression is horrible thanks for making these videos its hard having qualifications then be totally unable to do normal things. Like decisions or understanding them or suddenly no speech.
I wish I had more support in this Unmasking journey. I'm had no idea to expect a Regression. I hope my videos do help people who are also going through this process. ❤️
Its really scary that part as its such a major inconsistency. I'm so glad I'm good finding information as I was like more here going on and yeah its a common thing. This whole unmasking thing is so hard but the way I can talk to my mum is a lot. I'd never had been missed if I was a kid today acting like such at those ages. I think she's thought Id meltdown at her reminding me of all that. Now she gets im just wanting to know for assessment and it wasn't like I forgot. We learn to mask because of these things from those ages. As here we are. Your journey and sharing helped me a lot. I was mute as when I found you trying to stay safe as I did it and had ambulance called it was so confronting. And the lady said its just bpd behaviour. Even if it was that causing such high distress would be so sad. I know ppl with that and its stigma is worse than ASD it seems. Its awful as that isn't correct if I have that disorder I don't use mutism to humiliation of detriment. Makes no sense at all and I wanted no attention or to talk to anyone. I just needed time alone before all that and my usual checks. For a fully Dx neurological disorder that's a bunch of fun. I can't even remember what voice tone I was using n can't look at them at all now.
You have helped me understand so much more about my wife of 30+ years, listening to you explain everything. We sometimes have conversations where she is able to explain the difficulty she is experiencing, but listening and watching you, I can visualize more of what she is trying to explain. So many times I have watched her trying to explain a topic, tell a story, or just tell me of something she saw or heard, when the thought becomes displaced. Minor distractions can often be recovered from but sometimes the thoughts are so lost I can see her becoming upset with herself. For years when I recognize her rising frustration level I have said "oh look, a butterfly", which is my signal to her that's it's OK, like the butterfly that flies away, it will return so don't get upset. Often this is enough for her to be able to recover the lost thought or at least see where it was going. Such a complicated path each you must lead in your life and I pray that each day is more blessed than the previous. God bless you and thank you.
This is so lovely, thank you for sharing. ❤️
I was diagnosed back in 2009 but ignored it until lockdown really highlighted my working life preferences, I decided to embrace it and talk about it openly. Now a few years on I feel I have mega regressed. I had a job interview recently and just totally failed, I couldn’t process what they were asking. It really shook me as I’d had loads of interviews since 2009 and never had that experience before. So I think there is more to regressing than just diagnosis too. I have to say I’m in two minds about how I feel about it. I am sad that being different is making life outside the home so much harder but my acceptance of my autism has made my internal feelings and my home life so much better. Thanks for continuing to post about your experiences. Allows me to have an outlet and mini therapy session in your comments 😂
This comment made me smile. I feel the same, my outside world feels a bit harder right now, but my internal self and home life feels much more calm and less anxious. The comment section of the videos really make my day! So many amazing stories and shared experiences. ❤️😊
I have def experienced this. But I also wanted to say I really appreciate seeing you lose your train of thought etc. because it is so validating to me to see other people experience some of those things. I am dxd with ADHD and self identified / realized autistic. I went through autistic burnout and regression before i knew I was autistic. For me, regression has been a loss of skills but a lot of those are to do with coping with sensory situations, my sensory sensitives are stronger than they've ever been my whole life. I am glad you talked about adult autistic regression, it sucks that so much information about autism is talking about children, and is only made for family members /teachers etc to interact with. I love that i am seeing more and more autistic content creators talk about our experience and share information about autism in a way that is accessible to us. Your slower pace of speaking there is something calming and reassuring about it to me. Not sure when but at some point I will probably watch your video(s) on your memory disorder because i have never heard of it, and afantasia because i have friends who experience it but i am on the opposite side where I am extremely visual in my brain. Love your channel
I totally relate to many of the mentioned things, especially the slower pace of speaking. XD
I have myself ADHD mixed type, but I´m superfast overstimulated and as much as I like all ASD related content on YT I can´t listen to all of them because of their fast speech rate, like a high-speed train. 😂😂
So it´s very important to have a wider range of people to whom we can turn to for advice and support.
What is dxd?
I experienced regression during the menopause. I’m still going through this now so I have no idea if the skills I developed prior to menopause will come back again. I did hit a brick wall in my career and walked away after more then 20 years where I lived and breathed worked and viewed it as one of the most fulfilling things I did. Finding it very difficult to understand why this happened. It has only just occurred to me recently that I am autistic as I went undiagnosed until my early 50s
This late understanding of ourselves as Autistic is a lot to take in. But answers are helpful, at least for me. Hope you gain back some skills that you lost. I think for me I seem to have good and bad days.
Littlemagpie - right here with you, could've written this myself verbatim 😢❤
I am blown away. Can I say thank you a zillion times? I'm recently confirmed my self diagnosis and this burn out regression thing is a pattern. Wow. Leading to my current life issues, homeless yeah. So hang in there everybody. Keep learning
Sending hugs. 💜💜💜
I’m so glad I saw this. I wasn’t understanding what has been happening to my 21 yr old Autistic Daughter. Now I know. I think too going to therapy is helping her to feel like she can be herself.
Thank you for learning more for her. ❤️❤️❤️
I found the shower bit interesting. I used to not think twice about showers , it was just a thing that got done, but over the past few years. I’ve gotten resistant to it because it’s just…overwhelming. The steps of the process, the shock of temperature change, gotta wet the hair( I have thick hair) gotta pick the right supplies, gotta remember to condition or should I not condition because what if it gets greasy, I HATE greasy, oh crap, do I have enough spoons to even consider shaving?
I’m not even autistic as far as I know so I can only imagine the feeling for someone who is even more sensitive to stimuli.
I’ve gotten super resistant to showers the last few years. It’s so overwhelming and so much stimulation. I hate the feeling of the water.
I have started having all the same issues with showering in the last few years. It IS about the overwhelm and sensory stuff and SPOONS for real. Thank you for sharing. I feel a lot less weird now.
What does spoons mean in this context?
I always loved showering, but I seem to have an aversion to it now, it's not painful, but just uneasy....
@@IntegrityMeansAllSpoons get used as a measurement of available effort you can manage on a given day. I'm not sure why.
I wanna say to be careful about confirmation bias because it goes hand in hand with this kind of processes
Especially when researching about autism is our special interest and we're super engrossed by searching symptoms, experiences and how we relate to all this.
It's an easy trap to be so much on the lookout for ways we relate to symptoms and
spend so much energy looking for them that we over amplify them with our minds.
Certainly happens with me
if you notice static in your vision and start thinking hardcore about it and looking for it, you're gonna see it more
if you're searching for things that overstimulate you, find out that bright lights are a bit painful and think about it a lot, it's gonna inconvenience you more
if you thought you couldn't relate to others well because you're not a social butterfly but then discover you have autism
and start thinking there's no way for you to improve and all you can do is accept your fate, it's gonna get worse.
Not meaning there's no truth or correlations between autism and all of those (personnal) examples. But I noticed that it's when I'm really actively looking for things that they get worse.
Power of the mind!
I find doodling whilst talking helps me not focus too much on the subjects being spoken whilst in therapy, I struggled with talking sessions in the past (was misdiagnosed with other mental health challenges n only a few years back was challenged by another professional, hence my awaiting assessment for autism), n then when I was struggling to function even the simplest of tasks got frustrated by other professionals involved in with my family asking "well why can't you do that", I just didn't know n kept pleading for help. N tho articulated at times it didn't help n what I did say misconstrued to the point my family was torn apart n my youngest 2 alienated from me within the care system. That was back in 2012, I have never recovered from that butt am hopeful I can maybe get some answers n support in the near future. As much as I can info drop on others I do find researching things does overwhelm me too n sends me in high-tension states that exasperated what is going on with me. In a nuttshell, I hear what your saying n agree 💯
Dribs n drabs might bee the way tho, eh no?
@@Madmontyjam i found the same thing out for me and therapy. Whenever i see a new therapist now i ask to have paper and a pen. I also have to tell them to ask something else and come back to it if i just like freeze up.
You know, I think I needed to find you today. You seem like someone I could spend hours sharing with, or even just sitting in silence with. I have never felt so seen. Thank you.
😊😊❤️❤️❤️ This warms my heart. I'm glad I provided some peace today.
trauma is one of the worst thing a parent can do to a child because it destroy them and make them feel like they're not worth it, and that scar is in me for ever
My nephew regressed as a child. He began speaking later than normal but he began learning to speak until he had a sudden regression. He is non verbal today, and never spoke again after the regression. As for myself, I have certainly noticed some regression in myself recently. I made some major changes to my life a few years ago to stop some negative habits, and that included basically tearing my entire life down and starting over again. Though I eliminated the negative habits from my life, I was also forced to end many friendships and completely change my entire lifestyle. As I have been unable to make new friends, I have essentially spent the majority of my time alone for the last five years. During that time, I have definitely noticed that my social skills have regressed, and many aspects of my life are becoming more difficult to manage. In many ways, I was better off having the bad habits. My life was much easier and certainly more enjoyable.
Common story for many of us Autistic people and I wish we could have happier ones.
Wow! Thanks for putting a words to the actions. I had been wondering what happened to me when dealing with so many losses in life at one time. Regression! It makes sense.
I know it's so confusing! I thought I was going crazy and beating myself up. There's no manual for this! But when collectively we as a community are experiencing the same thing after diagnosis, it just makes sense. We are pioneers in late diagnosed autism, we are writing the manuals and hopefully spreading info so less people get a late diagnosis.
I love your vibration, I've just discovered your channel, I got diagnosed with Autism last year (August 2022) at 45, at 33 I was diagnosed with complex PTSD (2010). I'm figuring out to be authentic yet many people around me don't understand what I'm trying to say, I'm lucky that I have a good friend that I've known since I was 18 (28 years friendship now)and was honoured to be best man at his wedding and his wife is wonderful too have been really great with there understanding and support. I say they're my family.
I am completely terrified to unmask. I can't right now. Watching you makes me wonder for the first time, like what people would think of me, and I don't think I can ever do that. I love the people closest to me, but the concept isn't even something I don't think anyone around me would take very seriously. I definitely come from that suck it up type family environment. Watching your vids and other similar ones gives me a safe space where I can at least be honest with myself about it, so thank you ❤
You are doing an awesome job with these videos, please keep doing them. We need everyone to learn about autism as much as possible. Thank you
So glad I'm not the only person who can go off on tangents and forget the original topic in a conversation. Thank you for sharing that about yourself. I've had my job for 20 years now and get through it by constantly strategizing to keep myself on track. Working on a mail room for a private company isn't the most vomplex of jobs, though.
At 51 I figured out last summer that I’m autistic and adhd and I got diagnosed this month. It was the combination of autistic burnout and long Covid that took me from high achiever (but is sporadic spasms) to spending most of the day in the couch for years. I’m glad I know what’s going on. There was a mourning phase for sure. I realize I will never be like I was. Like you said, it’s unsustainable. It’s super weird to all of a sudden be very autistic. Even having trouble speaking and getting words out. And the auditory processing. And I can’t see myself working either. I’m thinking of selling stuff I make on Etsy.
Yes, I want loved ones to understand that even though it might be strange for them it is WEIRD for us too. And I wasn't expecting it, I couldn't figure out what the heck was going on. Then I finally heard other people going through the same thing and I felt less doubtful of my own expereince.
I am really glad I came upon your videos. I became aware of this concept in the last few years because I also had it happen to me in a major and noticeable way, after the death of my mom in 2021. I am 52 and have never been diagnosed, for context. I was my mom's caregiver during the covid years and lockdown. I was trying to save her life and improve her diabetes with diet and exercise, but it seemed every time I tried certain people in my family or my mom herself would throw up roadblocks and I felt as though I became her guardian angel and had to protect her as she developed dementia (I think more rapidly, from all the bickering going on in my family with myself). She fell and broke her hip, and it was downhill from there as she had to go into the hospital and they didn't care for her properly, were even neglecting to assist her to eat. So, after her death I had an existential crisis in that in my grief, I lost sight of who I even was, my hopes and goals were no longer important, I questioned everything including my faith in God. I came upon a video interview of several diagnosed young women, and then it finally hit me like a ton of bricks falling on my head, I have autism (Asperger's) and not only that but other undiagnosed neurodivergence -- ADHD, sensory processing disorders, learning disabilities, executive function brain deficiencies, agoraphobia, misophonia, social anxiety, CPTSD. And in all of that, I had a strange feeling as though I am no longer an adult but have regressed to being a child, as I can't and won't do the "adult" responsibilities that I was able to do before, although with difficulty. And coming upon your video and reading other's comments I now know that it's not just me!
That's a lot and it'll take a while to recover. Sending hugs.
Omg I’m so grateful to have found this video. This has been such a life jolting experience to lose life skills. I’m not alone and not crazy, thank you.
I have always wondered just HOW I could forget what I am talking about mid-sentence... I would become distracted by some fleeting thought in my head it has always driven me crazy. I would always explain to people that my mind works so fast that my mouth can't keep up! I would be happily talking away and just blank out! it made/makes me feel a bit like a crazy person but that's how I have always been since I was a child. I had a teacher in high school ask me if I had ever been told I had a learning disability... He spoke with my Mother who would hear NONE of it she said I had a very high IQ and that there was nothing wrong with me, but, unfortunately, that is NOT how I felt about myself I never saw myself as smart. I couldn't keep math facts in my head or how to structure a sentence, I have no idea how I made it through school except that I was a complete Band, Choir, and Drama NERD!!!!!!!!!. When I had my Son and he was language/ speech delayed and he was placed in special education classes when discussing his IEP I told the teachers he is just like ME!!! I identified with everything they presented about his learning disability (the apple certainly does not fall far from the tree). He is Autism Spectrum and ADHD, I know I am Autistic and ADHD without going and getting a formal diagnosis I am now 64 I could say I know everyone in my family is Autism spectrum and/or ADHD diagnosed..... anxiety disorders with depression also Autoimmune disorders. I wish I could just be Neurotypical for one day so I could experience what it is like to have my whole brain work for me! and not against me. As far as masking goes... I feel as if I am an "Actor" in my life? Everything is strange and unfamiliar. I am an introvert who prefers to be left alone, I do not like to be touched although I like hugging my children and grandchildren. My stim is playing with my hair I have had since I was a small child. Ah! also, just like my Son, my mother said I too, did not develop speech within the typical norms as a child. however, when I did begin to speak it was in complete sentences and completely understandable no baby speech. My Son however started to speak but then stopped around 18-24mos and started to point and scream then pound his head (Scary) but then when he did start speaking again at 4 1/2 yrs old he stuttered. I best stop talking this is getting too long
Thank you for sharing, I have a similar story as you but I'm a bit younger... Similar issues & was a drama freak in Highschool lol... I'm in the middle of a melt down burn out thingy as y'all call it, I think ... I'm just learning about all this. I really feel like I stumbled across all this because I was praying for answers. Just remember we are fearfully & wonderfully made & this world is very strange but you are not alone. May YHWH bless you abundantly!
Hugs. Thank you for sharing. I know your story will be read by others and make a difference too.
It's lovely to see a female here on youtube who I can recognize as fellow autistic. It is very disencouraging when these spaces are just full of people talking to us while masking and very edited videos. It doesn't make me feel safe to unmask myself. How could someone represent me when they won't unmask to speak to us and about us. I can mask too but it's shorter and shorter and clumsier and clumsier as I get older. I have burned the candle from both ends too long with 0 supports so more often it's not a possibility to mask any more.
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Thank you so much. This helps me understand much better. Menopause, pandemic, shingles, and loss of my last parent...plus a crapload of repressed memories resurfacing, along with a ton of emotional flashbacks...all culminating in my realization...self-discovered autism. Age 53.
It helps me 2 know, after reading a few comments, that I'm not alone. Sadly, I have discovered the hard, that unmasking is dangerous for me, especially a woman of color. My neighbors have not been able handle the noises, the partial nudity (clothes hurt. Why thr neighbors feel the need 2b peeping Tom's and watch the weird okd lady, is beyond me. Plus, the singing I do (it's therapeutic 4 me and helps me process my feelings thoughts) it's all too much.
Some neighbors sent drones to watch me through my windows. I was absolutely terrorized. So I left that house and went to my property in the rainforest, thinking I had privacy and could figure out who I was, unmask safely, mourn the loss of my last parent, breathe, sing, dance, take off my scratchy shirt and feel free as a child, etc. Nope. The white neighbors within earshot decided that they had the right to trespass and spy on me through the bushes! Seriously. However this time...I'm not running away.
I'm feeling healthier than ever out here in "da jungle." Yet, I find myself creating a new character, and realize that, 4 my own safety, I have 2 conform...even when I think I'm by myself! 😢
Hopefully I'll figure out how to fully unmask safely one day, maybe. But nobody, not even my family or husband can handle my unmasked self. I feel like they all expect me to eventually return to my "normal self" (which was miserable,) yet don't have any tools to make it happen. Plus...I don't want 2b that former version of me. I want 2b allowed 2 discover who I truly am. Kid's 2day who get early diagnosis are so blessed. They don't even know
Wow that's crazy! I hope you can find peace away from nosey neighbors. No one should have to deal with that!
Always appreciate the validation for those of us who have not yet been able to obtain an official diagnosis. ❤
❤️❤️ I'm so grateful it was accesabile to me and I hope I the future it will be to anyone who needs /wants an evaluation. It's ridiculous that it is so unaccessible to people.
I feel the message of this video so hard… I’ve been trying to give myself dedicated ‘unmasking time’ (read: stim time) before bed where nobody can see me. A couple of times I’ve tried not looking people in the eye with friends I felt comfortable enough to try it with. I rarely actually look people in the eyes, but at their nose or forehead instead. I used to look at people’s mouths before someone told me it was a sexual thing?? Which is the LAST impression I want to give, but damn if I didn’t understand people easier when I could see their mouth shape when they spoke.
Anyway. I realized just how much I’ve been masking being comfortable with eye contact. I did it a little, mostly because I know people will think I’ve drifted off and I’m not listening but honestly, I was present 90% of the time talking with these people than I would have been if I were faking eye contact. I’m on a different planet. I don’t know what to do with this realization now… eye contact is one of the biggest things that help me blend in.
I 100% hear you. I feel like I'm losing the ability to mask eye contact. Watch my video on Regression. I used to watch people's mouths, I didn't know that could be construed as sexual. 🥴😮 I did it so I could sort of lip read and well avoid eye contact. I have had people ask me if something was in their teeth and that's how I learned that I was watching people's mouths because I wasn't even aware of that originally.
Sexual??? Oh gods, that explains a lot! Although my hearing is very sensitive, I lip read all the time cos otherwise I can't differentiate between what's being said to me and all the other noises around. I only realised I did this when we all had to mask up in shops, etc. I've literally always been accused of flirting when I really really was not. I think perhaps I know why now lol! When I'm talking, I 99% look away into the distance too. I wonder if that makes it look like I'm lying? Easier to just not bother trying to socialise for me, really, it's a minefield...
Ive noticed this too more and more recently, i find myself at work in a dilema where walking past people in the hallway i can just not look and walk on by like issac hayes, but then i feel an energy like they think im rude, but anytime i nod my head and say hi i get the same treatment.
But yes theres been times i catch myself mid convo avoiding eye contact and i tell myself stop being scared and i stare them directly in the eyes and they act like either theyve seen a ghost or maybe ive seen many of ghosts and THEY start breaking eye contact. Idk if its just my eyes or just my akward energy but when i finally commit to looking them in the eyes it never lasts long untill they start doing the very things i was previously doing.
Maybe these people are saints that secretly realise what im going through and are just trying to throw me a bone?
Im pretty sure this one lady at work suspected i was autistic before even i suspected it cause looking back shes always given my time to think of my next word/phrase, doesnt even try to assist me with the word she just lets me think knowing itll come to me soon, and then when she speaks to me she often glances all around the room up down left right but doesnt stare me down much.
Have you ever seen someone further on the spectrum than yourself to where you were able to recognize and cater to their needs?
@@ASSman864 I think I have. I met someone once at a language exchange meet-up and was given an in-depth verbal tour of the person's film collection, VHS tapes and all :D It was actually nice to be on the receiving end of someone else's info dump than giving my own. I'd like to think I recognized their need to talk, and gave them the space to do that. This person had monotone speech, zero affect on their face, and very obvious rocking/swaying motion (I'm trying to come up with a better way of describing that, but failing). I assumed other people at the meetup wouldn't give them the time of day, or try to find someone else to talk to. Best part of that interaction was they asked me my pronouns right up front, and it made my day :)
I’m so happy I found you today ☺️ I’m not diagnosed autistic but traits really seem to resonate with me, like 11:35, lately I’ve been actually worried about my social skills being so rusty that my tangent mind will take over and I know I don’t have control of it, also how easily and often my mind drops my train of thought is something I’ve been preoccupied with these days and it’s scary. It’s nice to put a face to somebody else who experiences it. Thank you for your videos!
You've put into words (which is something really difficult for ME) exactly how I've been feeling over the last few years as I was diagnosed with ADHD Inattentive type about 5 years ago and highly suspect I have autism as well. And for an extra good time, I was dealing with all of this during covid... working in healthcare (overtime, and no vacations)... with three very different, new bosses, each wanting to make their own "changes"... AND going through menopause... omg, the stress I've been under! I thought I was losing my mind. Instead, you've helped me realize what an incredibly strong person I am. It sure would be nice to hear it from people in my world... but instead, they probably think the opposite unfortunately. Anyway, thank you SO much for this... you have made me feel a thousand times better!
❤️❤️❤️ Yes it really looks one to the outside, but we are dealing with so much on the inside out of our control.
@@i.am.mindblind Yes, for sure! So much going on inside that no one can see, yet at the same time, we're afraid to try to explain it all because it's so hard to make people understand and they will often look (even more) differently at us. Thank you so much for talking about all of this, especially this video's topic, because you're helping so many with ADHD/autism AND those we encounter that have never thought about this... it gives us a resource that we can send to them to try to explain, especially for those of us that have trouble finding the right words!
First video I've seen of yours. Thank you thank you thank you for not editing out your processing glitches, it feels so real to sit and watch a real person be real. Feeling very emotional about it, your behaviours are very similar to some of mine and it's nice to have that kinship.
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I've felt like i was regressing. I wish i could just sit snd play with dolls and do puzzles and craft projects. I want to go home and live with my parents again when I was safe and my needs were met.
I thought maybe it was burnout, or early dementia but this makes sense too
I'm so tired
It's a lot. I think if we can find a way to recover we can slowly regain skills, in a new way. We won't be like we were before. Unfortunately a lot of autistic people don't have people who understand we need this process of recovery and Unmasking.
I relate to all of this, especially everything you said at the end.
Sometimes I process things really slowly even during a conversation, my brain skips over something someone said and I basically verbal vomit with talking and seemingly go off tangent but then randomly cycle back to the point I skipped over that someone else probably thought I missed or ignored. And what happens is I end up addressing everything but it’s all random and out of order and it’s a big mess. And sometimes I do forget random things that someone said to me because there was way too much information overload at once and my brain can’t remember it all.
Sometimes I’ll hear one thing from a random point in conversation and hold onto that and my brain obsesses over that one particular point, other times I only remember whatever the last thing a person said was or only remember the very first thing someone said was.
I don’t do well with multi-step instructions/tasks, I can’t remember things if the process is too long and I don’t have a list or a chart or visual aid of some sort.
But. One thing I am glad about is if it’s something important like a task im meant to do, I know myself well enough to know that I’ll forget immediately. So I always make note to write things down if I know I need to remember it. Write it down as im being told, write down absolutely everything even the things that seem obvious so I know I won’t forget or overlook anything. Even if I think I’ll maybe remember, write it down anyway just in case. It’s so much less stressful.
And when learning a new thing I always write the whole process down especially in a new job or something and keep my notes handy so I can reference it when I need it. I’d rather have to read a note 100 times and have that visual reminder than have to ask someone the same questions over and over because I can’t remember how to do something even though I’ve been told or shown multiple times.
It’s just less irritating for everyone involved.
Once I finally learn something and finally eventually remember it. I don’t forget after that and im fine. But getting to the point of remembering takes a long time sometimes 😂
Brains are weird
Brains are weird. Often I figure these "life hack" things out for myself but I'll convince myself that THIS time I'll remember. No, no, no I won't. I never seem to learn that particular lesson. 😜
Thank you thank you thank you for talking about this. I believe I fit the PDA profile but I was heavily controlled in my childhood to perform (from doing all the house chores to academic success) and now as an adult I don't know why doing some of the dishes takes a day to recover from, whereas I used to utilize every minute of the day to be doing something. Once again you've helped me to feel less alone ❤
Makes me think about how I only like short sleeves and even when I have long sleeves I push them up as I can’t stand sleeves on my arms - do it w coats too 💞👊
What an absolute great video and topic! Autistic masking and safety is a real issue, not addressed enough. ❤
I love your videos ❤ you're helping me truly understand myself from the inside out.. currently undiagnosed high masking autistic 37yr old and also awaiting my ADHD diagnosis/assessment 👍 I think I have CPTSD also which caused me to learn to mask from an extremely young age, so much so I didn't even realise myself that I wasn't who I wanted to be. Finally learning to unmask and stim in public, be who I really am, not who I think society wants me to be ❤ thanks for the fantastic content and your honesty towards Neurodiversity ❤ One love from the UK 💚💜💙
I'm not professionally diagnosed but I have said for several decades that I have an auditory processing disorder in addition to I forget what I just said on a regular basis. If I didn't have it written down before hand, then I won't remember what I said. So I write down what I want to say ahead of time. And if you are thinking that makes normal conversations difficult, you are right!
Also, I don't remember what people say if I don't write that down right away - as they are speaking - which makes for awkward business meetings and social events because I really need to write down what's being said in order to remember it but people frown on someone writing. I do it until someone tells me to stop - then I usually make a voice memo so I can write it down later.
When I was younger, I struggled with the 'spidey' feelings all over me - and don't let something land on my skin - even mosquitos, which are usually so light that people can't feel them until they are really biting them. For me, I felt them as soon as they touch me - as they were landing - and that drove me crazy! I could not concentrate on anyone talking or a task I was trying to complete. I learned that having low B vitamin levels attracts mosquitos so I started taking B50 several years ago and I hardly ever get bitten - and they don't land on me to begin with so if anyone has issues with them touching you, try taking B50 everyday and see if you notice the difference after a couple days of having good levels. (It also improves energy levels too!)
I taught myself music production, 3D graphics, video game development, guitar playing, I have an Architecture degree, etc. but I can't seem to use any of these skills to help me make a living. I've learned to just make and learn stuff for myself and be happy with it. I feel bad for not being able to share what I've learned about the world, or the skills I've acquired so far but that day might come in the future.
Amanda, I'm SUPER grateful to you!!!
I suffered from quite often being labeled as being deaf, yet I knew that was not the case.. I described it as hearing something but I could not find the sound in my sound database hence I could not make any sense of it.
Then you mentioned "auditory processing disorder" and described what it did for you.
Bingo!!!
Glad you stumbled across me then! Having labels for our internal processes helps so much for others to understand us
Yes, loss of skills. That's why I do sudoku (it's stress relief), back up a bit. To my horror as an adult I sort of lost basic number skills, especially when under pressure, a kind of regression to fears from childhood when mental arithmetic was basically regular torture for me. Anyway, if I can use numbers in a fun non-threatening way (sudoku) then I have a gateway without the panic. Not sure if this is related to your talk, maybe a tangent.
I love tangents. Tangents is where the interesting bits of life live. :)
So this is more or less the same as "autistic burnout". Thank you for this video. It describes what I have been going through for years and certainly the last few months.
Thank you. So much. Dissociating while showering was an important concept for me to hear about.
And I apparently had never had auditory processing disorder explained to me, only heard it mentioned - because I have always known that I do what you described in this video, but never realized it had a name. So thank you.
I appreciate you telling me that. Hearing the kind of information that is meaningful to you helps me know what to share. Thank you. ❤️
The past 3 years I’ve been facing this in an increasingly manner. The cooking thing resonates so deeply, I’m like why don’t I feel like eating anymore, oh I don’t feel like painting or doing anything anymore. But I’m not depressed although I have moments of depression (which I now think it’s just burnout) I have been studying human design, and working on my deconditioning process so I was going through this before I knew what autism was - I never expected to resonate so deeply with the symptoms and now all of this “not feeling like doing anything” is making SO MUCH MORE sense. I guess I just gotta be patient with myself. I gotta go to work (waiting tables) and wow I really don’t wanna do that!! I used to drink to mask through it, but I quit drinking and now I’m realizing how different I really am!! I also thought the fatigue was from quitting alcohol. But now I think it’s def skill regression.
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This is exactly how I feel. I felt like a normal teenager and since I was 23 when I was diagnosed, I regressed to like a preteen. That’s my demeanour now and I went out partying, smoked, drank, and now I struggle going into shops and daily tasks. It’s like my skills and “adultness” are gone.
… Same. Regressions. Relearning. Went thru a major emotional/mental/physical break down during lock down. I’m still relearning how to be unmasked and get back to a way of function on my own. I’m teaching myself how to play the flute. I have a J-O-B, but it’s shaky. I’m having a hard time getting them to actually train me in certain tasks or give me guidelines at least for responsibilities I have no working skill set for. “Oh, its not that big of deal, just wing it.” Um, no. Masking for those few hours a day is exhausting. And when I dropped my basket a couple years ago, all my masks (i call them survival drives) broke and with them went my databases. The only mask I had left was “yes ma’am” and that one is my first and most heavy and soul crushing.
I don't think neurotypical people grasp how difficult most work places are for autistic people. Hugs to you.
When I was a child I asked my mom a question something related to how terrible hair feels in the shower and she just looked right through me, as if I had three heads or something, and said, “No?” 😅 That was when I learned to just keep my questions to myself. I also hate showers, and I also use rough, scratchy, scrubby shower gloves. Hmm… I always thought it was more of all the steps in the process feeling so intimidating- like there’s so much to do. Not that I don’t feel better after a shower - I do, and sometimes it’s overwhelming because I do feel gross and I do want to be clean, but it’s just so exhausting to even think through all the steps in the process. And the hot/cold of stepping into/ out of the shower. So many things.
Yep. ❤️❤️❤️
Hi Thanks for sharing your experience! I am also going through it, it is also called Autistic Burnout... I also having trouble showering, but in a very different way, my hearing is sooo sensitive right now, that the noise of the water hitting the floor and going through the drain is very loud and overwhelming. Hope you feel better soon!
Autistic Burnout and Regression are similar but slightly different from my understanding. Often a Regression comes after a Burnout. Burnout leaves you feeling (often) similar symptoms to that of depression. Regression is a loss of skill in things you used to be able to do. I can see how that could be collapses with a Burnout because during a Burnout it's hard to do ANYTHING. I totally get that! But regression is finding your rhythm without the mask, or after a Burnout trying to get back to a new normal. This was how it was explained to me and I do think that having them as separate distinctions helps with communication as to where someone is in their process. 💚
@@TableForOne01 I love that my videos are your happy place right now! I did have my IQ tested as part of the assessment and it was high, which surprised me because I'm such a slow processor, but slow doesn't equal unintelligent! I wish my teachers would have known that. 🤪 (I did make good grades, but struggled with anything that required speed for showing what you knew.)
@@TableForOne01 😂☺️😂 I love it. You brought a smile to my face tonight. I do know the Autistic deep dive!
“Not try to conform to society’s expectations” that’s very powerful. I wasn’t that good at masking anyway…
I can relate to having to relearn things. I'm 54 and only surrendered to self-diagnosis with autism a year or two ago. I've wondered to varying degrees for many years; but just a few years ago I was struggling still with trying to get my crap together knowing I was dealing with CPTSD, Bipolar Disorder II, and ADHD, and yet it seemed so many quirks still didn't fit. Being a child of my generation, it's been hard to set aside the stereotypes around autism. Finally conceding that I had to add to my list of diagnoses, I've been having tremendous success, inch by inch, at addressing both problems and misapplied assets. Instead of fearing OCD, which never seemed right, now I have a whole new perspective on my need for routines, for why I get perturbed by housemates not following my lead on how to load the dishwasher, for example. The new perspective has freed me from whatever fears were holding me back from embracing these needs. No I follow a routine on breakfast making. I have my routine on my hygiene trips to the bathroom and I seldom forget to brush my teeth anymore. My mother was a commander rather than a teacher, so there were quite a few things I had to figure out for myself growing up that now I've had to completely relearn to I can manage them more effectively. It's a bumpy ride; however I've crossed a threshold where I get the point of it. It's no different from how I gave up trying to improve at swimming and instead went back and started with the most rudimentary class. And it worked. I just need good teachers to guide me and yet allow myself to develop my own way. I've had several jobs where I was promoted to supervising others, and I always gave atypical flexibility to my subordinates to develop their own ways of achieving the proper results in an efficient manner once they mastered the way I taught them to jobs. Somehow I never really allowed myself that same flexibility. I was raised by a covert narcissist mother as well as her self-righteous/covert mother, to some degree, so teaching and patience were not generally part of the package. I marched to a completely different drummer; was a brainiac yet often failed to learn unimportant things like whistling or riding a bike as soon as they wanted me too; froze up when I didn't understand why there was suddenly drama with me at the center of it-or the subject at hand, frankly-thus labeled obstinate, willful, selfish, disrespectful of elders, and uncooperative for freezing or arguing. I'm exhausted reliving it in order to get to the root of my hangups and suss out my own antisocial behaviors for change-small wonder I'm still working on that after falling for a malignant narcissist whom I let practically destroy me and kept taking jobs working for jerks and-it turned out-criminals. Yet progress it is. I feel it. Millimeter by millimeter.
A few years ago I admitted to myself that I was wrong all those years I felt independent. In retrospect, I've never been successful on my own for more than a few months, even when the "person" I depended on was my dog. I'm also trapped in the SSDI/medicare system and its arcane and punitive rules, so it's that fun being financially poorer than ever. I feel like I've forgotten how to get things done. I celebrate when I finish more than one task per day. And yet I'm making progress right now relearning, developing new routines, creating some sense of control and stability.
Thank you so much for sharing. You sound like you are dealing with a lot with a positive attitude. It's so easy to react in frustration and anger and those emotions have a place, but your attitude is going to lead to more happiness I hope. 😊❤️
YES, showers are super-annoying! The water droplets can sometimes feel painful. I honestly wish I had a bathtub.
I was diagnosed at 19 but it was pretty well known I had struggles because I grew up in the special ed department being passed around my county. I actually have to mask around my family so I understand the masking stuff
🩷🩵 Hugs. I'm sorry you have to mask around family. I hope you have a safe space to just be yourself sometimes.
@@i.am.mindblind only when I'm alone xD
Im diagnosed with asperger, as well as bipolar, bulimia and a couple chrnoic stuff and so on. And im rly starting to thing im regressing or smt??? i could to somewhat before is almost impossible now. Basic shit like, taking out the trash or washing clothes etc. I feel so shameful about it too. Idk if its because of physical pains, my brain, lazyness??? I often think of just ending it all so I wont have to deal with it anymore… my mom and some ppl in the county have started talking about assisted living again, sell my appartement etc since I’m low functioning. I always thought I was high or medium functioning, but now… I struggle to shower… I fucking hate myself so much. Idk whats wrong with me..
You are not lazy. Please please talk to the people in your life or call 988 if you are USA. Regression after Burnout or after Masking disabilities is a REAL experience. It is common to be "high functioning" until you just aren't anymore. That's why functioning labels are dangerous and not being used anymore. Our bodies go through adrenal fatigue after masking and pushing past our limits for so long and that causes this regression that may or may not be reversible. Getting support and accommodations is a good thing. You are a worthy person of this support. It is not laziness. I really hope you get that. It's so so hard as we live it, but focus on just the things you can do without causing meltdowns and rely on the support. Hopefully your support people are understanding of this too. 💚💚💚
Also, I am not a trained therapist, this is just peer to peer support. I do hope you'll talk to someone. 💚💚💚
An excellent new piece of the puzzle for this recently self-diagnosed 71Year-old. I really appreciate it. Thanks so much!
I’m 51 and so many of the exact words and phrases you use have been in my head for so long. I really relate to how you speak about holding down a job. I’ve always had to be high high HIGH masking. Was in the Marine Corps, have worked (unfortunately) with people (service things) in every job, and I’ve been (regrettably) a chiropractor for the last 20 years. Always at each job for 5 years or more, but rage suffering through the last 2-3 of those years each time. Nobody else will even interview me despite having a wide, international, range of experiences and skills. And, like you, everything I attempt, I am able to self-master. But I’m so fucking tired. Every day all day at working smiling and helping to make *other people* (always other people, never me) feel good. I feel like I’m dying inside, all day long. And it doesn’t even pay well enough to not have constant money stress. I can’t seem to find any escape hatch even though in the last 3 months my inner feeling of being about to burst has rocketed up. Can’t find any worthwhile jobs that pay enough to live on. And the jobs that DO pay enough to live on are meaningless work and gatekept to the n’th degree (if I even wanted to do those jobs). I can’t go backwards financially or I’ll end up homeless - as most people in this country are about 3 weeks of lost pay away from homelessness. It’s just frustrating. But I still have to drag myself to work every day and pretend I’m not dying inside. Our society is hella toxic.
5:13 this made me SO HAPPY!! i have been regressing on my skills hard, and also enjoying the benefits of masking. but now i cry about the THOUGHT of making phone calls, and I can go on about the skills I feel I lost.
Knowing that I'm a normal zebra and that i WILL get my skills back made me feel so happy, as i espoused. Thanks! subbed.
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Thank you for sharing and being honest with yourself. I know how hard it can be
I totally lost the skills of working on site, I used to be very good at masking with coworkers but now I get anxiety mostly when is the type of cubicle workspace, felts like an invasion of my personal space plus Im not agreed anymore with the fact of being the weird girl of the office and im scared and panic of being the mocked again. I remember I kind of nail the skill of masking in the office till the point that it was so mentally draining that I couldn’t take it anymore. I got fired from my last job and they made my life a living hell.
Apart from that, I lost the skill of living with pets, I get a lot of anxiety when I found out hair on my clothes or a single hair bothers me a lot, and I do love pets but for me now it’s impossible.
We are brilliant people but we sometimes got misunderstood as airhead or at least me I was judged as a stupid on my previous jobs and there was a point that people used to doit in front of me like if I didn’t notice or even asking me why I get stocked at talking and if I get lots in the air.
Im not a native English speaker and it is also something I’ve decided to learn by myself, im not saying im a genius but I kind of learn by being autodidact. Most people won’t believe in our skills if they judge us by our facial expressions but intelligence has nothing to do with your facial expressions or pauses. As there’s so many people who look brilliant, smart and sure about themselves but they are not.
I wouldn't have guessed you aren't a native English speaker. Thank you for sharing your experience too.
Good morning. Thank you for having a youtube channel that I just happened across in my feed yesterday. I had seen some of your videos before but lost track of you. I am a Neurodivergent woman of 60ish age. I was self diagnosed with Autism within a few years of my sons diagnosis. Long story but we a family of three are all in this category with different idiosyncrasies and disability. Mine mostly hide because of being female in this age group. Seriously underdiagnosed is an understatement. Looking back, I see the masking. Lifelong masking. I understand that I am a kind loving person but have reached that burnout. Another thing I want to touch on is when people say, "we are all on the spectrum". I find that insulting but I digress. I also really like the way you explain the term "disability. It makes it much more clear and easier to explain to people. Yesterday, this particular video was just what I needed. It helped me so much. I have been sitting here for months going what is wrong with me? It wasnt depression exactly. This put the pieces together for me. I am so glad I found this channel. Thank you again.
I'm glad you are here! ❤️❤️❤️
I’m 39F autistic ADHD mom of 2 kids, one of whom is also auDHD. I believe that if I hadn’t had an autistic regression I wouldn’t have admitted to myself that I am actually autistic. Some days I really do act more autistic. This video helps make sense why. Thanks Amanda. 💚
I’m currently experiencing this!! I had my business shut down during Covid but that coincided with my mum’s Motor Neurone Disease getting worse and her needing personal care. We could not get a carer so I have been supporting my dad in caring for her and for the last few months taking care of both of them.
Oh yes the showering thing has been a struggle lately for me too….😂
I’m a recent subscriber and am really grateful to have found you. Thank you!! 🙏🏻♥️
That's hard, my mom also needed extra care just as I was going through burnout (just before my diagnosis) and I couldn't help her as much I wanted to and didn't have the words to explain why. I was just so exhausted. I was doing everything I could but it wasn't enough. And I was still masked (because I didn't even understand I was masking) and she thought everything was fine with me. She didn't know I came home and just crashed.
Newly diagnosed female, mid30s.
Getting back out to shops after years of COVID lockdowns and isolation made me realize that...I have major issues with making eye contact. I also have to push myself harder to do social things. I think the pandemic was eye opening for me in this way. It gave me the perspective I needed to get assessed.
I think this happened with a lot of late diagnosed women and one reason theres so many of us finally realizing we were autistic.
@@i.am.mindblind Indeed. Another common theme is having a child diagnosed. My preschooler was diagnosed in Spring 2022.
Yep, I got diagnosed as I was trying to understand where my kids anxiety and sensory issues were coming from. Learned they were autistic, as I learned more about autism it was like, oh... oh... Oh! 🤔😳 Me too!
Just a thought. Why not wash head and body separately? Put your hair up (or in a shower cap) when washing body so it won't touch you. And then wash hair while leaning forward so they are hanging down and not touching your face/body.
Wow!! THIS is what is happening. I literally just told my sisters some aspects are getting worse. Self diagnosed a few years ago so this is a perfect explanation. Thank you! Now I know how to move forward.
Thank you for this video I'm 49 just realized within the last 3 years I'm autistic going through this right now with several things that used to be easy for me including driving
You are doing amazing things for everybody in this world with these videos. Thank you so much for sharing your experiences and educating others.
Auditory processing issues. I have damaged hearing, but I've always had to ask people repeat things. Very often I'll answer them, before they've finished. This is because I've had a few more seconds to process their bocal sounds into words. I was glad to discover this, it doesnt improve things though, and I can never tell, wether it's a hearing issue or not.
I relate to this. I’m struggling to drive and communicate with people. It’s been rough because my 2 year old is in early intervention so there are a lot of people in my house all the time. I also am struggling to cook.
When you talked about the world not being ready for unmasked autism I was like 😳 that is profound as it relates to racism and prejudices. Great insight
I am glad I saw this video! I am a self diagnosed autistic. My imposter syndrome is making me think my unmasking is me just ‘overdoing’ it to make me look more autistic.
I didn’t know that regression is a thing (no matter how logical it seems). Internalised ableism is very difficult to overcome. Thank you for this video.
Thank you for talking about the experience of autistics of colour. I often have workers following me around in stores and it happens often to black people anyways due to racism but I was shocked it was happening to me as a young girl because everyone had told be how sweet I looked. I realise now it's more my behaviour than my race. My eyes scan around everything, too much information and seneory overload so I get overwhelmed. Sometimes I pick up stuff and change my mind and put them down, I never pick the product that is in the front because the idea of so many people touching it grossed me out... stuff like that. It's so nice understanding what's going on now that I realise it's autism, I had internalised all these stares and people judging/watching and it was really bad for my mental health. My mum would yell at me all the time that why won't I help her go to the supermarket, she thought I was selfish and I always knew I wasn't and the word selfish became a trigger for me. It's really good to know your triggers. They tell you everything. Before I used to ignore them but now I realise it's the path to healing and understanding.
I was legit just saying to my doc that I think I’ve gotten worse since disclosing and getting confronted with the facts of diagnosis and doing all this therapy work… so without getting into it all… as a disabled diverse veteran… who grew up in a very socially intolerant environment… (because why not just double down and go into the military after that lol)… I appreciate you sharing this with all of us. 💩 is real - 🚂 🧠 💨
I've been experiencing this & haven't had the words to explain it. Thank you!
I think it is really important for people who can unmask to show their real self to society. To let people get used to the fact that those "strange" behaviors exist and are essential for some people and that they are not a threat. Because that is the biggest issue. All of humans perceive an unknown in their environment as a potential threat and need to gather certain amount of information in order to disregard it as a threat. What triggers this perception and how people react to it is extremely personal. But as a society we have somehow instinctively figured out that standing out can be problematic. This will be a process. While neurodivergent people have to finally come out I think a strategy of being gentle with everyone about it will be the most successful. I know the bottled up emotions of having to not be your true self for most of ones life. There is a lot of anger and it's natural. However, we cannot fix the past. What we can do is make the future just a tiny bit better. Bursting out on society doesn't look like a fix. I am still learning. I am not even sure if I am autistic as adult diagnosis is difficult to access. But I feel atypical and have felt like that for my whole life. (people for some reason find mentioning that you are different like a brag which I don't understand for the life of me) I am currently struggling to gather the language needed to describe my experience to people I encounter to at least give them a chance to accept me even slightly unmasked. My biggest problem currently is how to deal with my mini shutdowns I can get when I am really overstimulated in public. At home that's not that hard. But I have to force myself to stop the shutdown when in public as I feel threatened cause I don't know what happens if I let it go. That would not be a case if I was with someone I trust as then I at least feel some safety net. And I call it a mini shutdown cause I never become fully unresponsive. What happens to me is my cognitive contact with reality get heavily impared: I almost instantly forget what people are telling me, I stop noticing things in my environment that might be a threat, I cannot say what I want to say (I am mostly able to speak but it's hard to express anything), my thoughts race so fast that they are of no use to me. I don't even know what I would need to take care of myself properly when this happens in public. On instinct, I've usually tried to "run away" while putting all my energy in staying safe on the phisical plane. But it still leaves me exhausted and also unhappy that the interaction did not have a positive outcome for me (if it happens in a situation I was planning to get something resolved with another human being... get some information or share some information to another person and get feedback). I think I would like to hit a pause button, let my brain do whatever it needs to do and then resume the interaction. But I don't have such a pause button and I have no idea how to get one. Plus I have recently started driving again and I still have this fear that I will not notice something important because of overstimulation and cause serious harm to someone or myself. So far no serious harm done to any living things - only a scratch on my car while parking and one unpleasant road situation where I was in the wrong but the other person decided to be an asshole about it and honk at me which made me even more confused and made it harder to resolve the situation (it was resolved as someone else was nice and let me go around that other person tho afterwards I was shaking and hardly made it upstairs to work)
I agree completely with you in this. That's the main reason I started this vlog, in hopes that some allistic people will click and learn from autistic voices, in the video and comments. Of course in public I'm working on stimming in public too.
I also tune things out when I'm overstimulated and it wasn't until recently I realized how unsafe that can make me. But I don't have much control over that.
Something I do that might help you with regards to making your videos smoother: I know how easily I get distracted, off-topic or just lost, or struggle with words when I'm talking. So when I'm doing a video, I write a script for exactly what it is I want to say. (And as a typical autistic, I edit it about a bazillion times to get it "just right"... which it never is, and rehearse it over and over.) And then I downloaded some free teleprompter software (the one I use is called Imaginary Teleprompter), and just read what I wanted to say off the screen. It helps me keep a rhythm and pace and not talk too slowly. It does take my eyes off directly talking to the camera, but nobody's expecting eye contact from an autistic man anyway... 😉
UNLESS the aim in your videos is to be yourself and let people see what an autistic person is like unmasked, in which case... nevermind. ✌😅
You got it with the second part. This is a vlog showing a lived authentic late diagnosis journey. I do sometimes do some light scripting when I want to make sure to hit certain points but a lot of my videos are just me exploring what it is to be neurodivergent.
Wow. It's like you are speaking for me. This is an eye opener. This is the first time I've heard anyone talk about the things I experienced all my life but never knew why. I always felt so off. I have come to call what you call a mask, my shield. I wear it I public and can only keep it up so long. This explains so much. Thank you for sharing.
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I can relate to much of what you say. I chose a job as a reporter in TV news and was fine until I had to go live, and I could never remember more than 2 sentences. I had to memorize scripts where others could speak off the cuff. Eventually. I figured out a workaround, but when I look back on it now, it was extremely stressful. I prayed every day for God to "make my words flow from my brain to my mouth" EVERY DAY. I have regressed since I retired and am now stable financially. I don't HAVE to try so hard and so have allowed my mask to fall in the sense that my family understands that when I start talking, I may not remember beyond a few words what I wanted to say. I stammer, too. I have to actually think about it, write it down, and then recite it. Very true on the phone, too. It took me advocating for my son, 22, who has ADHD and autism (dx) to see that all his issues were true for me as well. And his dad! Thank you for this channel and for all the great comments.
Oh wow! Going live as a TV reporter sounds so difficult! I'm glad you found a work around but I imagine how stressful that was. I'm considering going live on the channel and that's with people knowing I'm autistic! And it's still stressful. I went live once on my cooking channel, but was still undiagnosed and very masked.
@@i.am.mindblind As you have said it is easier to speak on something you know well. I do speak publicly for a cause I am interested in but that's it! I appreciate your replying and just love your content. It is so healing for me and others. Nobody here will judge if you happen to lose your train of thought going live because it is so validating!
Good point on the losing train of thought with the right audience! 😜❤️
i have sensory issues with my hair as well!! my solution was to just shave it all off, haha. it's so soft when it's been freshly shaved 💛💛
I know so many Autists that have shaved their heads! I'll never say never but I am attached to my curls. I do like shaved heads though on men and women.
Yeah, as a neurodivergent person, being able to work in a flexible environment is really helpful. However, the amount of work/credentials/status it takes to get to these kinds of jobs can be prohibitive
Very true.
Man, this is exactly what happened to me. I'm so glad you explained it. I realized I was autistic, and my mask shattered, and it was like I couldn't even function. I went from being really badass at a high-skilled job, to barely being able to keep it together. Had to take some time off for a shutdown. But I couldn't figure out why that happened. Surely I should just be able to integrate that information and keep moving like I did before? It's been a serious life change for me. I think I'm getting it back together, but things fell apart pretty badly for a bit there. Going for my official diagnosis next week.
It's very confusing and unexpected. No one is talking about this. Or very few people that I've come across. But I honestly wouldn't have understood or even necessarily believed it if I hadn't seen it.
I went through a very similar experience. Shortly after my diagnosis, I experienced my first autistic burnout. Ever since, I found it really hard to perform my job to the same level as before. I’m hardly keeping up and feel like I am really struggling to do my job.
Thank you for this video, it really resonates. It will help me to understand my experience better and put words to it.
Purple ella had a video about why she cut her hair. I have gotten a rash on my upper back that seems to be from me scratching due to tags on my clothes. I never liked then but it's like I have been hyper sensitive to them lately. I hate the ends of my hair touching my skin and sometimes it feels weird at the roots on the top of my head (hurts and pulls) and I can also feel and sense when it needs brushing and I can't concentrate until I do it. I shower once or twice a week because I am always too exhausted from overwhelm and intermittent lack of sleep
My curls and I are in a constant battle. I love my curls but they tickle, and the gel I need to use to keep them nice is ikcy feeling. I hate wet hair but my hair takes so long to dry. But I do like the look of my curls so I put up with all the icks. It does make sense looking back at why I cut my hair really short at various times, like after I had my twins. It was one less sensory thing I had to deal with.
Haha, that´s funny! I "talked" (in my head) to Ella, saying, damn, when will I be able to cut my hair again? My fibromyalgia and whatever this new pain comes from wouldn´t let me for a long time, but I had to wear them high on the head with a ribbon most of the time, bc uaaaghhh, what are you doing there on my neck and shoulder and ..... arrrrr.... 2,3 days ago and a few pauses in between I managed it! yayyyy, beloved pixiecut, I have you back!!! 😂😂
I would like to encourage you, because you are so interesting, and I’m learning so much from you. I appreciate the effort you put into making these videos. It feels like you are someone, I could meet for coffee and share recipes with, even maybe do a bit of crochet together. I don’t mean this in a creepy way, you just come over as a lovely warm caring person, I hope you are having a good weekend, love Janey x
Thank you Janey. ❤️
i've been wanting to comment under other videos that you made, but i must tell you i feel so seen when listening to you. there's a lot of things you're describing that have been difficult to identify/ explain/ understand/ relate to even in neurodivergent communities. i learned about aphantasia because of you, i understood my slow speach and now understand why i can't """"adult"""" anymore. i originally have ocd, dysthymia, add and dermatillomania diagnosis, but i've been questioning a lot about autism recently and your experience really talks a lot to me.
i'm also someone who experience a lot of sensory overload, auditory processing delays, hypersensitive (in the sensorial and the emotional regulation type of way) and have a very strong sense of justice.
i experience the same feeling you have while showering as if my hair is always tingling my skin, but also as if i have too much dry skin sticking to my body, which i have associated with dermatillomania, but i recently understood it was a sensory thing and not a visual issue wih my body.
anyway, thank you so much for doing these videos. This labor is truly appreciated ❤
I really appreciate you commenting and letting me know my videos are making a difference. I feel connected when you tell me the things I'm describing you experience too. Thank you.
The most dangerous place for me to be unmasked turns out to be within my family. And in their presence is where I'm struggling most with Autistic Burnout & Autistic Regression. Especially around my DIL and son & my DIL's family. She's a nurse and thinks she knows everything about all medical conditions. Point of fact, she knows only outdated information regarding both my autism & my rare central nervous system disorder. As such she's very judgemental & makes assumptions about my behavior & motives that are based on her ignorance of the difference between her neurotypical perspective and my neurodivergent "deficiencies" (at least they're deficiencies in her mind). As such she's pushing me out of my son & grandson's lives & they don't know enough to disagree with her. She's not evil, but she is prideful & doesn't know enough to know what she doesn't know.
It breaks my heart to be shoved away like this, but, watching your video, thinking about the high cost of masking and thinking about growing up the scapegoat in a dysfunctional family, I'm beginning to think it's best to go low contact with them anyway.
No one can make that decision for me, but I want you to know that, once again, your vulnerability & willingness to put yourself out there on UA-cam IS helping people… a lot!
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I feel like the period of my life where I need to have "my shit together" the most. I am absolutely useless as a functional adult and a parent. Becoming a parent to one child, I was so proud of myself for years for doing a good job. I would surprise myself every day. So much so that I decided 10 years later I wanted to have one more child.... needless to say, I ended up having twins, then an unplanned pregnancy immediately after the birth of my twins. So I went from being a mother of 1 child. To a mother of 4 children in the course of one year. My first child was so easy. My younger 3 are all autistic and have been, for lack of a better way to put it, extremely difficult. So when I truly need to have my shit together the absolute most, I seem to be falling apart. I feel like I'm failing my children every day. I've barely left the house the past 2 years. Now, when I have to leave the house, it's become such a stressful ordeal. I miss doctors' appointments constantly. And I just can't help asking "wtf is wrong with me, like why can't I function anymore"?
Hugs Mama. Do you have support? I know some parents with Autistic children qualify for in house help. I don't know if they have to be level 2 or 3 for this. I didn't learn my twins were autistic until they were 14 and so we are beyond needing more in home assistence. We do OT occasionally and talk Therpay. Leaving the house with two kids is hard, with four is just a lot for anyone, especially an Autistic momma. You do not have to have it all together. Fed, clothed and loved. Along with the phrase This too shall Pass. We love them, but it is a VERY difficult part of life, young motherhood. 💜💜💜
We need to talk. I am high functioning asbergers. To hear youexplain your experiencees , I know where you are coming from. I would love to talk to you, about everything. Thank you for putting yourself out there. It is not easy to do, but cathardic at the same time. We are very misunderstood. I was brutally bullied in my younger years for being different. I knew I was, but not why. My parents dismissed it as me not being well behaved. I've grown into my own skin (despite myself) and have learned to embrace my own mind. Still I question myself at every turn. I would love to talk with someone that understands or can at least relate. Thank you for doing what you do.
I'm so happy I found your channel. Diagnosed at 42 also
I'm glad you are here too. ❤️
My problem is proving this to doctors. All i can really find online is things that say autism does not get worse. While techincally our brain pathways do not change it does not mean they do not degrade.
You are right. Sadly society is not teady for Autistic people, or pretty much anyone to be thier genuine self. Not sure what ive got going on, but people can't handle my true self lol.
Another video resonating with me! Everything about it, from the regression to how you speak and lose your train of thought. I'm 43, undx. Though DX with ADHD (2022) and LKS (1987) LKS has overlapping characteristics of ASD and ADHD; I don't know anyone who's DX with LKS lol Thank you for helping me feel seen. ❤
I'm not familiar with lks. Glad you liked my video though. ❤️