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2,317 Views • Feb 29, 2024 • Click to toggle off description
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Views : 2,317
Genre: People & Blogs
Date of upload: Feb 29, 2024 ^^
Rating : 4.878 (10/317 LTDR)
RYD date created : 2024-04-21T09:11:21.46062Z
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YouTube Comments - 106 Comments
Top Comments of this video!! :3
This is an important video. I was supposed to be diagnosed at 2 y/o but my parents did not believe in it so I have been secretly struggling this whole time. They eventually told me in 7th grade. I have been really struggling becoming an adult and pretty heavily rely on my friends for many things. I am glad they are understanding of me and patient and they are the best people that I have met. I know I need to live with supporting partners and communicate my needs with them. Your videos have helped me realize why I struggle with "basic" tasks without being either reminded, guided through, or have it be taken care of for me. It has made me feel less lonely in my experiences.
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I grew up around people who were more so "just get it done" people. Though they didn't really put me down, I had inherited that mentality and asking for help still feels wrong to me...
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Phones are a big problem for me. It's a nightmare trying to do banking, signing up to websites, etc. where a phone number is needed for anything to work. I didn't have too much of a problem pre-pandemic and before the GDPR laws.
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Clinicians tend to look at how independent one can do with "activities of daily living". Personal hygiene, getting dressed, feeding oneself, social interactions with others, whether one has limitations with working, transportation, handling finances etc. Needs & accomodations will vary from person.
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I ask the bank to set up an budget account and helping me get all my regular payments automatically paid from that account. It makes everything paid at the time even when I forget about it.
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Thank you for this video. As a fellow autist who also has EDS, I got so excited when you proposed "needing other people's examples to help you figure out what's normal" as a support need. Learning that your concept of what's normal is Simply False is a hallmark of the congenital-but-late-diagnosed disability experience; how am I supposed to trust my own perceptions after learning that the whole world's been unwittingly lying to me about everything I perceive?
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Autopay is a life saver. Except if you ask me what bills I have and which cards they’re on it’s going to take a while to get an answer. Which causes two problems: I have a bunch of subscriptions I don’t use. I think I’m still paying for renter’s insurance on my old apartment (flat). And if a card expires I’m going to have to figure it out. Actually that’s how I stopped a Patreon payment to someone I had. The card expired lol. Part of the reason I don’t move very often is because I’d have to update all the addresses. I have made lists of those things in the past, but, where are those lists (lol)?
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Another very important and relatable topic. For those of us with less visible or less obvious support needs, we've likely become so used to helping and accommodating ourselves that we find it difficult to ask for help, accept help, or communicate what help we need. This brings to mind a 2015 interview with Simon Baron-Cohen from the Autism Research Centre at the University of Cambridge, in which he addresses this very issue: you receive your diagnosis and then, very often, you're just left. He emphasises that we really need much more practical support services, such as a trusted, familiar person who fully understands the challenges and is available to assist with the anxiety that's so often part of trying to navigate a neurotypical world. But that was in 2015, and the pathways to support, if they exist at all, still aren't clear. Thank you again for raising awareness about this.😊
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Boy, do I feel you on not getting support! And YOU'RE in the UK! I'm in the US - it was SO MUCH HARDER to try to even GET a diagnosis, and the systems we have here have NO direct directions to get you the help you need, it's just a disaster. I, too, have gotten support from family, and that's the best I can apparently do, because Autistics are JUST as ignored across the pond. And the "smarter" you are, the more they expect you to handle, without understanding that that's not how it works.
Thanks for this video, it helps!
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OMG Dana!!! You bring such fresh angles on this subject. I love it!!!
I follow many great autistic youtubers.
I think they are all great but of course like anything, we find affinity with certain people.
Your videos speak to me. Your content is so new and different even though it's all the same subject.
You are bringing to light so many nuances we don't see anyone talking about!!
Bravo my friend! Thank you!!! 🙏
Don't stop!
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Oh my gosh 😮 absolutely agree and relate to what you are saying. I couldn't figure out accommodations for myself so I did the things you said you couldn't do e.g order taken out and get taxis everywhere, which I don't recommend btw. My health has been a major concern and struggle which has most likely contributed to my recent cancer journey. I also have issues with eating and pain. But I relate strongly to the frustrations of not being able to manage day to day and just being told it's not difficult. I am 36 and still in the dark with this and honestly it is awful. And with the whole not knowing what's normal thing you are right and I am relieved to know I am not on my own, not that that's much comfort 😅. I have spent so long berating myself and feeling embarrassed about my inability to just get on with it and that has only made everything worse. Hearing you talk about it has made me realise I need to have more self compassion so thank you 😊. I hope you find some things that actually work for you. I am going to try for myself.
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My apologies if this has been suggested, I don't know which video was the shower one. String of Christmas lights. I've used them in my bath and kitchen for years. Some days they have been a god send. Thank you for your videos.
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I really hear you sis and can relate oodles. People always tell me to just try harder, be more organised and more disciplined. This is so frustrating. I have had exactly the same struggles that you have suffered. The worst thing is not being believed. Like you, I have to beg friends to help. I honestly try to be as independent as possible, yet somehow this makes things worse. Yes, I'd so love for someone to take these weights off my shoulders so I can concentrate on my strengths for once. Yes, brain overwhelm is a dreadful thing and can cause total incapacity. Being tired and stressed most of the time is no joke. I really understand. I think understanding and helping out with motivation is really helpful. My sensory problems thank God are not so severe and I don't have ALL your challenges but that still leaves a lot of exhausting obstacles. On top of that, we need to be extra vigilant against manipulation by others. It is like everything is conspiring against us at times. May God bless you, protect you and provide for you. I pray that others would gather round you in love. May other music lovers encourage you in your music making talents and enable you to shine in the way God created you to. Thank you for your content. May your channel continue to bear fruit. 🙏
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You just say what word for word I constantly say to everyone who will listen. Like, we are exactly the same human being and I’m actually shook. 😳
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Disability money, enough to live off and without authoritarian rules (for example about making extra money for yourself) would be of quite a lot of support to many autistic people I think. I think if autistic people could receive something like that it could (also) prevent a lot of problems. If only...
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Omg this is basically my life. Apart from the part about having anyone to ask for help.
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I can relate to the shower one as I once just showered in almost darkness and it improved how much I could do it. Like there is this orange light that I turn on that is really nice. I’m 18 so I haven’t really seen too many areas that I struggle in. But I do know that cooking is extremely stressful and overwhelming for me other than cooking an egg or making toast I just need someone with me to be able to do it better and even then I hate doing it.
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This is such a good video, for people with ADHD as well. And you're right, people just get a diagnosis and then have to fetch for themselves. Talk therapy sure, that might be offered, but actual physical support, resources and care, nope.
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I can relate to not realizing you are physically disabled. I was diagnosed with hEDS a few years back, but before that I just dealt with everything, and then my Dr thought I was a hypochondriac for years, then OH not everyone feels like this...I actually have something that explains everything
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@robertabarnhart6240
2 months ago
And then there's all the people who told me, "You're just lazy!!!!" when I asked for help. Now that I'm physically disabled, people are more willing to help me, but mental problems are considered to be fake disabilities.
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