Living with Autism | The Hidden Frustrations and Need for Support
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- Опубликовано: 24 сен 2024
- Excerpt from "Am I Making My Autism Up?" Watch here: • Am I Making My Autism Up?
Download my FREE Ultimate Guide to Understanding Autism here: www.momonthesp...
A big change for me on this front was getting real about underwear. I did a tally one day of how many times in the day I spared a thought for underwear discomfort. It was OVER A HUNDRED! After that I invested in a bunch of seamless sensory safe underwear and have hardly thought about it since. One tiny change but so much more focus and less mental energy! I've also had far fewer meltdowns after work since making that small adjustment and using headphones when noises bother me. The "low" support needs are still needs turns out 😅
This is fabulous and makes so much sense! Thank you for sharing your experience. 😊
Only found out ADHD-I at almost 46 and now suspect Austim at 48. When I worked in a corporate job I was moved to a floor where the VP on that floor wouldn't allow cubicle walls. I just happened to sit by the laser printer and everyone would talk to me all day long. I couldn't get anything done. It was difficult without cubicles in general, but a million times worse with the constant interruptions. We tried to a divider just in front of the printer and the VP (was not even my department's VP) wouldn't allow it. Instead I made the company buy me a cordless headset for my phone (hundreds of $$ 18 years ago) and I wore it all day regardless of whether I was on the phone so that I could actually do my job. Makes so much sense now!! But I sure would love to see that VP deal with it for one day. I know he wouldn't have been able to handle it.
Yessss!! I have changed so much about my clothes since my AuDHD dxs. Including underwear. Makes a world of difference in my day!
My life essentially ended 9 years ago when I went thru menopause. It was so bad I saw no future for me at all. My doctors all told me it was just menopause. I suffered so intensely I almost lost my life and was diagnosed with adhd and autism. I started adderal IR and in 30 minutes felt like the person I was 9 years ago. I am stunned and so happy. The autism has never bothered me. I actually LOVE that I am autistic. The ADHD not so much. There seems to be an enormous reluctance to diagnose older women. Fight for yourself and don’t stop until someone listens to you. My team of very young doctors literally saved my life. Try to get help from a teaching hospital. Older practitioners don’t want to consider autism and adhd in women for whatever reason. I was misdiagnosed with “depression & anxiety” for my entire life. They just want to shut us up. You will feel insane at times but don’t stop screaming for help.
So glad you're still here and thank you for sharing your story. Welcome back to you! 👏🏻 🎉 🤟🏻
@@jmaessen3531 thank you. ❤️❤️❤️
holy shit you just described exactly what i'm going through rn. i feel insane. my si is at an all-time high. i've already been diagnosed with adhd, but drs refuse to prescribe me adderall *plus* klonopin (ONE dr did & it was the time in my life where i felt the best. my current dr says it's like not legal which is incorrect.) so now i'm not on either. but i'm terrified of drs now bc of how much i've gone through with them ignoring me & basically trying to gaslight me & not caring whether i live or die.
all that's to say tysm for posting. people like us need to speak up more about our experiences so we feel less alone & maybe can get some help and relief. 💙
@@aka.roryyy just the thought of how my life could have gone so much differently had I known sends me reeling. It took me forever to find a counselor who acknowledges my autism and adhd and knows what she is doing. I plan on starting a support group for older women who are diagnosed & undiagnosed.
@@ScienceMom11
Yep. Late-diagnosed at almost 81, June 2023.
I gave myself two weeks for a project I would have worked myself ill to finish in a day before and it was incredible to finish something without just being absolutely crashed out after and able to truly enjoy what I was doing WHILE I was doing it!
A lot of people depend on me so I force myself to the point of needing total isolation to recuperate and then no one understands or really supports why I need that. I’ve been called selfish for taking that time but I don’t care anymore. That’s it I need it. Period.
So relatable!
Alone time and self care is a necessity, not an option. You have every right to take the time you need 💖 But also totally relate to having obligations and feeling guilty not doing things for others. Your kids learn self love and self care from the way you love and care for yourself, so all the more reason to prioritize you. Can't pour from an empty cup 💖
This is the point I have forced myself to because of my internalised ableism. And I am utterly burned out and exhausted. I couldn’t go to work last night as I was on the verge of having a meltdown when I was finishing up that morning. I need a break, I have been voicing this need for weeks and have received no support - pretty sure work thinks I’m a robot, it sure seems the bar is set so much higher for me than it is for everyone else. My family gets the dregs that are left over. And now I’m broken. Maybe they’ll realise that I am a valuable employee over the coming weeks and months that I’ll need to recover.
before i knew i was autistic i used to feel the need to shut everything around me down and isolate myself and i just thought something was wrong with me and i didnt know how others dont need to cut everyone off for a while and ive lost so many people for it, i have been told that i’m not normal and smth is wrong with me and i still dont know how to explain that to people or how to maintain a friendship and bring it back to what it was before i took that time off of everything and i don’t know how to prevent being burned out by “social overload”.
@@krystenc2486i have told myself i’m broken more times than i can remember, i have thought that i’m beyond repair because how come all these people around me can do these things and i cant, it gets to a point where i physically cant do anything not even get up from bed. i believe we need a proper routine and system and i refuse to believe that we are less than the people around us, we’re just different not broken!
In my opinion...
As an Autistic person, my life would have been so much better if people would have just told me the truth. Why do Normals have to lie so much?
They do it because they would have to deal with uncomfortable or at least inconvenient feelings and emotions if they didn't. No, I'm not being snarky, solid information about them operating on feelings instead of information is out there to find.
Couldn’t agree more..!
Those earrings make your eyes pop! It's wonderful!!!
Having living without support for 38 years since I was 5yo, it's like a weight has been taken off my shoulder as I get to understand myself more.
I just sat in a BUSY bar with live music with no headphones BUT took the sketchpad 😂🎉❤ opened so many convos and got to highlight an amazing sketch 🤺🌐
normally need absolute quiet or low music to do art....put my frustration near the deep end and jumped 😂❤
pebble or boulder 😅🫡🤺 stay curious ❤
I remember that I used to have a lot of energy when I lived alone and without certain exotic problems. It wasn't something that I did consciously but I noticed the improvement it caused.
True true true!! And when you listen to your body’s messages and lean in to what you need, you’ll feel better 💐
Ps Taylor, the colours of your outfit look stunning on you! You are GLOWING
I wanted to change the world to take away these frustrations. For everybody. The hippy revolution. The green and caring revolution. All those political ideas that, for me, were in good part about just that. But I didn't. I was too tired. (and i guess the world was too big). Thanks for the clarification!
I totally hear you. That's how I first approached it too, in my early years as an adult until I realized that was burning me out. Unfortunately, everything else ended up burning me out too. Sigh.
Well, mine have recently compounded after 25 years in a mediocre marriage and 9 children later. I am exhausted and irritable and my executive functioning is almost completely gone. I've just learned I'm AuDHD about 4 months ago and don't even know what support I truly need and really I don't even have anywhere to get that support. Maybe if someone could come help me organize my home, show me how to give good consequences to my children, help me learn to budget my finances... Maybe I could get out of this shutdown. 🥺
9 children?! Wow, that's difficult to manage without adding either Autism or ADHD in. You really do need help with your situation. As I don't know where you live or what you may or may not have available, I can only suggest generalities. If it's an available option, therapy definitely. A therapist can help you put everything in proper perspective while helping you navigate your diagnoses. I would also recommend checking out your local library and speaking with the librarians. Libraries typically have sessions and programs regarding a wide variety of topics, including an 'adulting for beginners' program where they teach things like managing a household and budgeting. They would also have information on how to access programs that you may need or are looking for but aren't offered at the library but at another venue. They would also know what other resources would be available for you and how to get a hold of them. Best of luck to you.
@@Shinigami2c2 Thank you! I do see a therapist, but they're not specifically trained in autism. I'll ask at the library. That does sound like a good idea! I'm in Indiana, also, by the way, if you do know of anything else. Thanks again!
Thats insanely hard! My heart goes out to you! I am an aunt, have been since I was 10 years old and now at 33 I have 17 nephews and neices, and I have a hard time dealing with even a few of them at a time as my patience for certian things is very low😬. I can't imagine having to take care of 9 kids of my own day in and day out🤯. I don't think I would be able to manage well at all. I am sorry I don't have any advice to help your situation I can easily give out on here. I would better be able to give suggestions if I was talking over phone as I could ask questions better. Sorry!
I thought I was overwhelmed with 3 kids and AuDHD. I also have chronic fatigue and pain though. And my executive functioning is also absolutely crumbling; I was surprised at that part. I used to be able to figure my way around even the pain & fatigue.
I always wanted a big family so it makes me sad but this is probably our last baby. But eventually these kids are gonna kill me if we keep going.
I can relate, except I have absolutely no kids at all and live alone! Ao give yourself a break.
I am wondering about accomodations and ways to help me manage, especially executive functioning.
The first thing I think would work is paying someone to clean once or twice per month, this creates a minimum of cleanliness.
But the main issue is creating and - especially following up and implementing plans.
I guess your kids dictate most of your plans and life, so another thing I’d do is hire a babysitter for the whole nine of the kids, some kind of activity, so you get a a few hours alone for yourself, at least once per week.
I want to hire coaches for different aspects of my life, but it’s mostly implementation that is needed, and coaches are expensive.
Could be some form of virtual assistant is the way to go; especially for you with the kids, they can help planning and scheduling etc.
Yes exactly. We have to remember that employers dont understand asd and we ARE worth it! Take our time to remove the pebble!❤❤❤❤ love ya
I experienced Christ carrying me as I was walking out of where she was receiving physical therapy for the last time. I found out she was terminally ill and they dropped her and injured her leg so bad here in McComb Ms hospital and she could never stand up again because of an injury to her shin when they dropped her. Can't sue them in Ms. Horrible place for me to be. Anyway, yeah so I was walking out and I cried out to the Lord saying I didn't think I could go on...to continue. I was completely exhausted physically, mentally and spiritually. So, as I cried out to him I literally felt him swoop down and pick me up. Later he asked me to lay my burdens down at his feet and I did for the first time in my life and I experienced the most amazing sensation of peace that I have ever experienced. I believe that is Holy Spirit. I have been transforming changing a little every day since then. It's amazing. Even physically.
This was my experience with ADHD meds. You mean everyone else just lives with peace and quiet in their heads everyday?
That is true, when the stressors compound over time can require considerable support. In fact would say become nonfunctional in many ways after it being too prolonged. Definitely need extra recovery time.
"Pebble in 👟 shoe'' is a great analogy ☺️
I love the pebble analogy. I've just initiated the conversation with my employer regarding accommodations, so I'm hoping that at least at work, my pebble can get a bit smaller ❤
I should comment on the content but I could not help but notice how your ear rings just set off your eyes! Wow! Made your eyes look a brilliant blue!
I remember many melt downs over the years and not being able to pull myself out alone, 54yo there again. Makes more sense with this diagnosis. .
I forced myself to be out in crowds while doing production work and back stage security typically. I actually got to sit on stage with Metallica which was amazing but , stuff like this is always a combo of the excitement and the difficulties that we experience I say we because I feel the connection and this finally all completely makes sense. By the way, crowds are still as stressful as ever...however I love people and I love anything related to the arts and creativity. I also took art at the University and was learning to paint in Nashville from a professor from Russia. His name was on the tip of my tongue and I forgot it. Anyway, he was an awesome professor like several other professors at the University. Have a great morning. I will sign up today. I just have to figure out how now and do it and I want to order an out of spoons t-shirt if you have mens medium aswell and a few other things. I've been out of spoons since I took care of my mother for five years and I sat with her alone as she passed. The most difficult experience in my life especially since she was the reason I felt as though I had to leave home at 12. She did want to change her will and leave me land or the house before she passed after she realized that I was the only person in this world that would check her out of the place that misdiagnosed her with end stage alzheimers disease and take the best care of her that I could with the help of hospice. I did have some amazing experiences also becauseofthe incredibledifficulty Ihad been experiencing alone as other family refused to help and some even tormented, attacked, reported me for neglect of my mom. The social worker came out and saw immediately that was bs. My narcissist sisterGailevenl8sted me as son inlawintheobituaries anddressed my motherlike a clown putting makeup on her making her unrecognizable. The whole thing was pathetic and I knew that it would be so, I discussed this with my mother before she passed and she completely understood why I didn't want to be around any of these people. My sister was down a week ago and I didn't tell her that I think I am autistic. I asked her if she was looking for ammunition to attack me with to others because she does. She talks to my son about me never in a positive way. She doesn't know anything about me. Anyway, I apologize for talking about this here if it is wrong or annoying. I am not trying to be I just want people to understand where I am coming from and dealing with.
Yes, true on it building up.
Im so glad i found your channel. At 49 im finally going for my assessment mostly because i deal with a kot of doctors and having an autism diagnosis would help me get better understanding from them.
I always knew i had quirks and that i was masking and all the things. High functioning but the real change is now im disabled and masking and tools take energy and skills i no longer have. And because i no longer have the tools to manage my stressors ive been feeling really bad about seeking accomodations because of my own head space. At the same time i know its ok to ask for them now that i dont have the tools to do it on my own.
Thr pebble metaphor applies to me when I got medicated for ADHD the first time
I know for me, I have been coping for so long I don't even know that I am coping. It is so integrated into my perception of my life.
I've been the "prince with the pea in my shoe" my whole life. I self-diagnised at age 36, this year, and until now I never understood that an entire layer of my baseline rage and dysregulation could be removed by simply taking the metaphorical pebble out of my shoe - whatever that happens to be in that moment. 💕
This is so true, and it is very well said!
Good points. often completely overlooked.
Neurofeedback has does that for me. I was not fonctionnal before. My life changed after neurofeedback. I can use periferal vision entirely voice are very clear now. I listen to a band playing live and i can imagine the concert how the singer moves on stage and the emotion that he was displaying on stage. I feel that should always be like that for everyone.
So well said and validating! Thank you.
Thank you for this video. I really needed to hear this today.
Im going crazy. Unfortunately not crazy enough. Heres a thought. What if I am so low support needs that I just think living is the feeling of enduring pain. Because I can. I actually have a low pain tolerance but I did natural childbirth etc. Because everything is harder for me so it makes things that others think are hard just another thing for me to bear. But I have shutdowns that no one understands. I dont know what to do when my kids dont understand why I cant talk anymore etc. It doesnt match my personality and though my close people know im autistic they still dont know what it means or why I act this way 😢
Very well said!
Yesssss!
Yep.
I really appreciate your videos and insight, thank you ❤
Yes big hugs ❤
It's true but not everyone has the means to quit their job and live at home. I was a single mother working and going to school to support my child without any help from family or the child's dad (he split when he found out I was pregnant). I had to work. I married when I was 26 but continued to work till our first child together came along. Now we have 5 kids, I'm 49 and planning to go back to school again. Now looking back it makes sense why I had burnouts but I had no clue what was going on with me, just used the weekends to recover but still had to care and support my child. I don't let my autism define me.
Good formyou.fornyour persistence.
No, not everyone does, but also not everyone can push through long-term without serious consequences to health, mental health and basic functioning, following conventional advice.
I think the use of the term "frustrations" can be misleading. At least, the things I'm thinking of that I just persisted through because "everyone else does it" involved pain and/or worsening consequences and decreased capacity of various kinds, loss of skill, that I have yet to regain.
To me the word "frustrations" and pebble analogy can imply to some simply not having the "right" mindset and don't convey real physiological consequences. The analogies I've used include holding your hand over a flame or a grinding tool. You might learn to smile and keep your hand there, but the damage is worse the longer you do so.
@@saschadh I just don't understand this mentality that you can be successful enough to get a degree/s and work but once you get the diagnoses suddenly you are unable to take care of yourself or your children, suddenly you can't do life. You are now weak.
Why do you see yourself as weak when Elon Musk, Steve Jobs, and Bill Gates are autistic millionaires, There are NDs individuals who were diagnosed at a young age who are worse than us that are getting degrees and working. They are not portraying themselves as weak.
Look at human history, individuals who were known as "Odd" look at what they were able to accomplish. So for this generation of NDs these days who look back at our history and say "Yeah but I just can't do life. All I can do is pity myself cause lifting a cup can send me into burnout." Is this the legacy you want to leave your kids who have autism? Like "No Jimmy, don't think about getting a job or going to college because poor little you can't handle it." Hell no! My 19 yo son has autism and he has 2 jobs that he decided to do on his own. I'm not going to discourage him from living a normal life because he has autism. If he knows he can do it I will support him. Don't use autism as a cop out for not working.
Very true 😢
I thought you were gonna say “then you take the pebble out of your shoe and there is now a big infected hole in your foot requiring surgery” cos that’s what my life feels like, finding out I had autistic burnout at 36 and lost my job 😂😂
If anyone reads this, please list accommodations you have or want or think would be helpful..!
How well do you do with your underpants? It's a struggle for me, always.
🫶🏻