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.
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.
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...
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!
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.
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. 🙏
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?
Boy, I feel THAT straight to my core! One of the things that helped was Jordan Peterson talking about what his daughter said as a child (she had juvenile rheumatoid arthritis). He said he was playing with her, and she said "Daddy, is that supposed to hurt?" - and that was the first time he realized something was wrong. And the first time she had been able to verbalize it. It was an AHA moment for me, as I realized that if it's a problem you've ALWAYS had, you don't know it's not normal, so you've never tried to explain it to anyone else AS a problem. It's very much like when I got my first glasses, and realized TREES HAVE LEAVES! They don't just look like the trees in cartoons and kid's books!
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.
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)?
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.
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.😊
I'm doing a Master's at the moment and my main support needs are extensions and deferrals. I did not need them during my Bachelor's Degree but due to autistic burnout, slower processing and monotropic split, I have benefitted from these reasonable adjustments.
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!
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.
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.
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...
UBI + subsidized reverse recruiters? Or screen every citizen for ND phenotypes and give us all access to similar services. Given how zealously we pursue our special interests, there's a lot of economic opportunity if we could figure out a societal solution to the 90% underemployment problem.
@oleonard7319 It is both. Autistics can be constantly turned down for jobs. But also being Autistic can be debilitating meaning it is hard to hold a job or work full time. As such there should be flexible thinking taking each individual into account.
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.
I have the exact same travel issues!! I got lost today despite knowing the destination, the bus route, and while using google maps. it's so stressful and embarrassing
Same! I can watch myself getting lost on google maps in real time and still have no idea how I got to where ever I am. It's honestly baffling to me how easily and how often I get lost.
I would agree that the best help is generally given by people in our own personal lives. There is that personal connection and unlike professionals brought in to help there aren't likely to be long delays before they can give help or another appointment or call they have to deal with. However that help from professionals, charities, etc, is still necessary, particularly for people who don't have personal contacts or on tasks that need expert intervention. I also get frustrated with people who suggest some simple solution to any problem whether it's autism, mental health or some broader social or political issue. There are no easy answers in life - as you say if there were you'd have done them and solved the problem long ago.
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.
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
I also try to walk everywhere if I can, even if it's a long way or in really bad weather. We have much more control over our journey while walking, not having to worry about traffic jams, diversions, breakdowns, delays, cancellations, etc. If I have to use public transport I much prefer trains as it's much clearer where you get on or off and there are more notice boards, announcements and it's generally much clearer. Buses are much more confusing - they're less likely to stick fully to a timetable and it's not always clear where to get on or off.A lot of these things are easier the more you do them but that's not always possible.
That is a major Autistic support need, someone to tell us when we are in an unsafe situation ! We can't tell. It's happened to me in Courts - very unsafe ! I've also been chased by groups of Neurotypicals wanting to hurt me just by walking to a store or somewhere out in society - they spot my Autistic facial dysmprphism and it makes them go on the hive mind attack.So yes ! No one should underestimate this need to Autistic supports !!
Am not even 50 yet and I got aches and pains. Especially at the beginning of my day when I try to get out of bed and my lower back and hips are hurting. I mean the pain is so bad I need to sit on my sofa for a couple of hours sitting up right until the pain eases enough to the point where I am able to go and do stuff like get dressed, have a wash, take the dog for a walk(except I can't at the moment as I badly stubbed my toe and bruised my foot last Saturday morning). I can't stand up without making sound effects as my muscles and joints are so stiff. It is only getting worse as I get older. I dread to think what it will be like as I near 60.
Have you tried physiotherapy? The one that consists of massage and exercises. From what you describe, it looks like your muscles got sore and are unable to relax and work properly due to that fact. And that sitting in the morning is for the muscles to worm up, become a bit more flexible to be able to function. I’d suggest you see a physiotherapist about your gluteal and thigh muscles. Very likely it will hurt in the beginning, but with the right therapy should become better over time.
Good video topic, Dana. We don’t like asking others for help. I have a difficult time with it. At work, they stopped complaining about how my jobs took twice as long as my peer’s, because mine never come back, and their bodge jobs frequently do. Sometimes, instead of working, I’ll just spend hours hunting for relics(field walking/mudlarking), and they let me. I don’t ask for much, regarding accommodations, and that’s what I get…not much.
Dana, the doctor thing.. I finally got around to making the dreaded doctors appointment for all the things I’ve put off only to get told off for having too many things!! I got to the third thing and got a lecture about how I should have booked a double appointment 😅 RSD kicKed in on the way out, now I’m even more nervous for next time 😢
Wow iv never thought about it really I was only diagnosed last year at 36 level 2 and your right they say here’s your diagnosis and u need help then disappear!
This is definitely an underutilized service. And it does cost money but its probably worth it to pay for an Occupational Therapy assessment. Where i live its about $150 CAN for the 1 hr assessment. I believe they can focus on sensory and functional needs and some accomodations. But also some of them have social media offering very helpful information and work arounds. One channel that has some helpful clinical webinars is ME TV (its a smaller channel)
I am so happy for you Dana. You've built a wonderful family of supportive friends. I just got my official diagnosis at 50 and I know that I need this. My therapist is helping me navigate assistance here in the US, limited as it is. I'm proud of you for getting so far on your own and for letting others help you. I'm sure you know how good it feels to help someone else. You can be proud of the teamwork that you guys are doing. I'm sure you help them when you are able. More often than you give yourself credit for, too.
I struggle to let others help me even when I know I will be in a world of pain by doing physical stuff myself. I hate asking for help and dont like accepting it as I feel like it's because I want to be self sufficient/independent. Could also be a trauma response, not sure. Also I get frustrated when others do things in a way I see as 'wrong' then feel guilty that I will have to do it all again in the 'right' way! (Think its cause others skip over details that I see as important). I found that I manage the shower thing by doing it on impulse, I discovered this trick recently at age 40! I have the bathroom set up so that everything is ready so that at some point then when I go to the toilet I just get in and get it over with. It is so satisfying not having to go through the procrastination hell that is needing a shower. I seem to run into negative friendships as well and suck at realising it until I get spat out by said people and blame/punish myself for ages trying to work out what I did wrong before eventually realising the person bled me dry/got what they wanted from me then moved on. Take care x
P.S. I also after realising I was probably used by someone, punish myself even more for allowing it/not seeing it sooner and for wasting my time punishing myself/questioning what I did wrong! 😂
Hi Dana - thanks for the content. Here is a "map hack" that I used in the past. Go old school and get or create a map on paper. Put pictures of significant landmarks so you are not constantly trying to read street names - which are not always all that visible. Then include directions like "turn left on the road just past this coffee shop." You might need help setting that up the first time and printing it so that it fits in a small-ish not book. I hope that helps.... I have used this method before. You can even do it for bus and train travel.
I''m glad you mentioned getting lost, I live near a little city I always get lost in, I tried to use maps on my phone and the pointer turned a full 180 degrees. I find housework daunting, I don't know whether that's an external non-autistic problem, as it's only happened here. I find cooking food daunting, again, that might be because of the place I am in. I suddenly feel too shy to say things, yet other times I can go up to strangers and speak to them.
Thank you so much Dana! You are awesome! Your videos help me a lot. 💖I was not diagnosed autistic til my late 40's. Relate so much to what you shared today. I really do need a lot of support but it is so hard to ask for it and let mysef recieve it (if support is offered or available at all) I'm a reasonably inelligent person and seem capable enough but making calls and paperowork that has to be done. My brain just shuts off like you described. I can't explain it. And that is such an VERY important thing about needing friends to help me see when I am in a bad situation with someone or how they are not treating me ok and stuff like that. So glad you talked about that. And the intolerence of sunglasses! LoL! Oh my gosh! That is me too! I can't stand things touching on my face. The looks I have gotten when I try to explain this aversion!🙄 I have tried to get used to sun glasses but I can't. I just go back to wearing my big straw hat to shade my eyes. 😊
I'm undiagnosed and 51 years old but through my own research I believe I am autistic. I have no friends none at all and I do not have any support system.😢 I am forced to live with someone that I absolutely despise. Either that or I would be homeless. The person I live with is extremely emotionally abusive to me, but I have nowhere else to go. It doesn't help that I have no income of my own, as I have not yet won my fight for SSDI.
yes, it is hard to look inwards at oneself and say this is what is happening to me, but a tip, if you have an OT get them to do a "sensory assessment" to find out what you can do, and what you struggle with, it helps to analyse your life through their lens, as they know what can be done, and what funding to use, also OT's can help order the things for you, how to use them, etc. a great resource. ( this is a 2 hour thing, but it is worth the time, to diagnose your needs).
I am so 🧡 happy for your better peace of mind! There is a huge business opportunity for bonded (legally authorized to handle money) helpers, advovates for autsies, likely largely volunteer. There are autsies and nts who would help that much for a small salary. I depend on writing everything I can on a big box calendar, myself. Of course even then it is insufficient. Yeah, travel for me too is a big challenge nts just don't understand why. In Canada we get free Disability taxi service, reasonably. This makes me weep. ❤ Hey Dana, even nts help each other, there's no shame here or defeat --- we are who we are and that's reality. Sometimes i feel like a weird cross-breed between autsie and nt, having lived so many facets of their life before losing my masking.
I relate to you so much some part of me hates it because it's magnifying my own deficits but I can't stop watching because it's so fucking relatable I can't even fully process it and I see parts of me others misinterpret and dislike in you and my gosh I wish I could hang out with you and literally just compare so we can make sure we aren't actually the same brain style duplicated lol. Your direct and honest and open in these videos in a way that really inspires me to be myself far more and myself is also direct and blunt and honest but also really caring but in a blunt direct way people miss the good intentions and such caring person you are. I think for me I was traumatized in a lot of ways and built a protective defense that makes me come across a bit like a cactus to others ready to prick them but really I care way more than I let on. Then they get in and I get a bit afraid if they get too close. I have perfection paralysis as well so that really resonated too. All of it. There's an app to Have sighted people help blind people through video Facetime services with things like identifying their socks or telling them if their outfit looks okay or reading a sign that doesn't have brail or whatever that they might need help with... I keep thinking how cool would that be for autism? To somehow find a group of people that isn't automatically mean to autistic people.... I guess that would be the hard part.... But genuinely helpful and kind people or maybe other high functioning autistic people... Just to help me figure out a map or confusing subtext or... Whatever weird thing I might need help with. I don't know the way it works where you live. But probably whoever operates the hub of the bus station has more information about how to translate their map system. Maybe they have an online version. You can compare or lay over Google Maps or something.... And maybe somebody helpful to explain. I too just need a helper to help with executive functions
Exactly! What do the levels entail? Does anyone really even have a clue? It seems the levels are as much of a spectrum as autism itself. I was expecting level 1 and I'm level 2 so I kind of felt like I'm doing too well to be classified as such, but then I see deficiencies throughout the day and reconsider. They really should label the levels something like "Able to rely on themselves", "Needs semi-daily help to survive" and "Needs continuous life long care".
@@oleonard7319 ....... it's not subjective, it's science. It's a rigid set of standards for each level. Each subject, as in each person, is going to have a different level, or be in a different place on the spectrum, but the three levels are objective.
@@johnbillings5260 how so? There are autistic people who need life long, daily support, in all that they do. Those that need lifelong daily support with some things, and those that need lifelong generalized support. Within each of those groups, there are varied needs, but the level of support required for those individual needs can fit into one of those categories.
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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.
I can relate!
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.
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...
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!
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.
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. 🙏
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?
Boy, I feel THAT straight to my core! One of the things that helped was Jordan Peterson talking about what his daughter said as a child (she had juvenile rheumatoid arthritis). He said he was playing with her, and she said "Daddy, is that supposed to hurt?" - and that was the first time he realized something was wrong. And the first time she had been able to verbalize it. It was an AHA moment for me, as I realized that if it's a problem you've ALWAYS had, you don't know it's not normal, so you've never tried to explain it to anyone else AS a problem.
It's very much like when I got my first glasses, and realized TREES HAVE LEAVES! They don't just look like the trees in cartoons and kid's books!
Yes to needing examples!
Damn this really resonates with me more now that I read it again 😄 the part about not trusting myself is so big and scary.
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.
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)?
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.
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.😊
I think this young ❤ lady has great potential, things ahead of her !
Edit: because she is so real, following "Keep It Simple Silly"
I'm doing a Master's at the moment and my main support needs are extensions and deferrals. I did not need them during my Bachelor's Degree but due to autistic burnout, slower processing and monotropic split, I have benefitted from these reasonable adjustments.
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. 😳
Me too 😅
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!
Yes, she is a 💞 special person !
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.
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.
Omg this is basically my life. Apart from the part about having anyone to ask for help.
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...
UBI + subsidized reverse recruiters? Or screen every citizen for ND phenotypes and give us all access to similar services. Given how zealously we pursue our special interests, there's a lot of economic opportunity if we could figure out a societal solution to the 90% underemployment problem.
@@innovationsanonymous8841 yes give us our own colonies away from the nts. That's the solution
@@innovationsanonymous8841 no the unemployment rate is a the result of intentional decisions by employers,on how they screen employees
@oleonard7319 It is both. Autistics can be constantly turned down for jobs. But also being Autistic can be debilitating meaning it is hard to hold a job or work full time. As such there should be flexible thinking taking each individual into account.
I agree so much about disability and extra money!
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.
I have the exact same travel issues!! I got lost today despite knowing the destination, the bus route, and while using google maps. it's so stressful and embarrassing
Same! I can watch myself getting lost on google maps in real time and still have no idea how I got to where ever I am. It's honestly baffling to me how easily and how often I get lost.
I would agree that the best help is generally given by people in our own personal lives. There is that personal connection and unlike professionals brought in to help there aren't likely to be long delays before they can give help or another appointment or call they have to deal with. However that help from professionals, charities, etc, is still necessary, particularly for people who don't have personal contacts or on tasks that need expert intervention.
I also get frustrated with people who suggest some simple solution to any problem whether it's autism, mental health or some broader social or political issue. There are no easy answers in life - as you say if there were you'd have done them and solved the problem long ago.
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.
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
I also try to walk everywhere if I can, even if it's a long way or in really bad weather. We have much more control over our journey while walking, not having to worry about traffic jams, diversions, breakdowns, delays, cancellations, etc. If I have to use public transport I much prefer trains as it's much clearer where you get on or off and there are more notice boards, announcements and it's generally much clearer. Buses are much more confusing - they're less likely to stick fully to a timetable and it's not always clear where to get on or off.A lot of these things are easier the more you do them but that's not always possible.
That is a major Autistic support need, someone to tell us when we are in an unsafe situation ! We can't tell. It's happened to me in Courts - very unsafe ! I've also been chased by groups of Neurotypicals wanting to hurt me just by walking to a store or somewhere out in society - they spot my Autistic facial dysmprphism and it makes them go on the hive mind attack.So yes ! No one should underestimate this need to Autistic supports !!
Am not even 50 yet and I got aches and pains. Especially at the beginning of my day when I try to get out of bed and my lower back and hips are hurting. I mean the pain is so bad I need to sit on my sofa for a couple of hours sitting up right until the pain eases enough to the point where I am able to go and do stuff like get dressed, have a wash, take the dog for a walk(except I can't at the moment as I badly stubbed my toe and bruised my foot last Saturday morning). I can't stand up without making sound effects as my muscles and joints are so stiff. It is only getting worse as I get older. I dread to think what it will be like as I near 60.
The genetics doctor said that I probably have EDS. My pain is worse in the morning and lessens as the day goes on.
Have you tried physiotherapy? The one that consists of massage and exercises. From what you describe, it looks like your muscles got sore and are unable to relax and work properly due to that fact. And that sitting in the morning is for the muscles to worm up, become a bit more flexible to be able to function. I’d suggest you see a physiotherapist about your gluteal and thigh muscles. Very likely it will hurt in the beginning, but with the right therapy should become better over time.
Good video topic, Dana. We don’t like asking others for help. I have a difficult time with it. At work, they stopped complaining about how my jobs took twice as long as my peer’s, because mine never come back, and their bodge jobs frequently do. Sometimes, instead of working, I’ll just spend hours hunting for relics(field walking/mudlarking), and they let me. I don’t ask for much, regarding accommodations, and that’s what I get…not much.
Dana, the doctor thing.. I finally got around to making the dreaded doctors appointment for all the things I’ve put off only to get told off for having too many things!! I got to the third thing and got a lecture about how I should have booked a double appointment 😅 RSD kicKed in on the way out, now I’m even more nervous for next time 😢
That happened to me too. I didn't even know that I could book a double appointment until then.
@@Catlily5 Right! Where is the rule book I’m supposed to have read? 😅
@@cassielee1114 Heck if I know!
Wow iv never thought about it really I was only diagnosed last year at 36 level 2 and your right they say here’s your diagnosis and u need help then disappear!
This is definitely an underutilized service. And it does cost money but its probably worth it to pay for an Occupational Therapy assessment. Where i live its about $150 CAN for the 1 hr assessment. I believe they can focus on sensory and functional needs and some accomodations.
But also some of them have social media offering very helpful information and work arounds.
One channel that has some helpful clinical webinars is ME TV (its a smaller channel)
I am so happy for you Dana. You've built a wonderful family of supportive friends. I just got my official diagnosis at 50 and I know that I need this. My therapist is helping me navigate assistance here in the US, limited as it is.
I'm proud of you for getting so far on your own and for letting others help you. I'm sure you know how good it feels to help someone else. You can be proud of the teamwork that you guys are doing. I'm sure you help them when you are able. More often than you give yourself credit for, too.
I struggle to let others help me even when I know I will be in a world of pain by doing physical stuff myself. I hate asking for help and dont like accepting it as I feel like it's because I want to be self sufficient/independent. Could also be a trauma response, not sure. Also I get frustrated when others do things in a way I see as 'wrong' then feel guilty that I will have to do it all again in the 'right' way! (Think its cause others skip over details that I see as important). I found that I manage the shower thing by doing it on impulse, I discovered this trick recently at age 40! I have the bathroom set up so that everything is ready so that at some point then when I go to the toilet I just get in and get it over with. It is so satisfying not having to go through the procrastination hell that is needing a shower. I seem to run into negative friendships as well and suck at realising it until I get spat out by said people and blame/punish myself for ages trying to work out what I did wrong before eventually realising the person bled me dry/got what they wanted from me then moved on. Take care x
P.S. I also after realising I was probably used by someone, punish myself even more for allowing it/not seeing it sooner and for wasting my time punishing myself/questioning what I did wrong! 😂
Hi Dana - thanks for the content. Here is a "map hack" that I used in the past. Go old school and get or create a map on paper. Put pictures of significant landmarks so you are not constantly trying to read street names - which are not always all that visible. Then include directions like "turn left on the road just past this coffee shop." You might need help setting that up the first time and printing it so that it fits in a small-ish not book. I hope that helps.... I have used this method before. You can even do it for bus and train travel.
I''m glad you mentioned getting lost, I live near a little city I always get lost in, I tried to use maps on my phone and the pointer turned a full 180 degrees. I find housework daunting, I don't know whether that's an external non-autistic problem, as it's only happened here. I find cooking food daunting, again, that might be because of the place I am in. I suddenly feel too shy to say things, yet other times I can go up to strangers and speak to them.
I’m the same with maps 😂 I can never remember which way the arrow goes, I walk the wrong way for half an hour
THANK YOU THANK YOU THANK YOU this is what I’ve been searching for and I feel like this is the first time I’ve seen this question actually answered
It never ceases to amaze me how NTs just brush us off (in several ways) and here in dear ol' America, support? Don't make me LAUGH
Thank you so much Dana! You are awesome! Your videos help me a lot. 💖I was not diagnosed autistic til my late 40's. Relate so much to what you shared today. I really do need a lot of support but it is so hard to ask for it and let mysef recieve it (if support is offered or available at all) I'm a reasonably inelligent person and seem capable enough but making calls and paperowork that has to be done. My brain just shuts off like you described. I can't explain it. And that is such an VERY important thing about needing friends to help me see when I am in a bad situation with someone or how they are not treating me ok and stuff like that. So glad you talked about that. And the intolerence of sunglasses! LoL! Oh my gosh! That is me too! I can't stand things touching on my face. The looks I have gotten when I try to explain this aversion!🙄 I have tried to get used to sun glasses but I can't. I just go back to wearing my big straw hat to shade my eyes. 😊
I'm undiagnosed and 51 years old but through my own research I believe I am autistic. I have no friends none at all and I do not have any support system.😢 I am forced to live with someone that I absolutely despise. Either that or I would be homeless. The person I live with is extremely emotionally abusive to me, but I have nowhere else to go. It doesn't help that I have no income of my own, as I have not yet won my fight for SSDI.
I pray that you get the help you need soon and that you are able to move to a safe place with healthy relationship supports.
If you get turned down for SSDI keep fighting. Most people have to get a lawyer and try multiple times.
yes, it is hard to look inwards at oneself and say this is what is happening to me, but a tip, if you have an OT get them to do a "sensory assessment" to find out what you can do, and what you struggle with, it helps to analyse your life through their lens, as they know what can be done, and what funding to use, also OT's can help order the things for you, how to use them, etc. a great resource. ( this is a 2 hour thing, but it is worth the time, to diagnose your needs).
The color palette on your videos is always low key amazing
I love this.
We love you Dana ❤
I am so 🧡 happy for your better peace of mind!
There is a huge business opportunity for bonded (legally authorized to handle money) helpers, advovates for autsies, likely largely volunteer.
There are autsies and nts who would help that much for a small salary.
I depend on writing everything I can on a big box calendar, myself. Of course even then it is insufficient.
Yeah, travel for me too is a big challenge nts just don't understand why.
In Canada we get free Disability taxi service, reasonably.
This makes me weep. ❤
Hey Dana, even nts help each other, there's no shame here or defeat --- we are who we are and that's reality.
Sometimes i feel like a weird cross-breed between autsie and nt, having lived so many facets of their life before losing my masking.
I relate to you so much some part of me hates it because it's magnifying my own deficits but I can't stop watching because it's so fucking relatable I can't even fully process it and I see parts of me others misinterpret and dislike in you and my gosh I wish I could hang out with you and literally just compare so we can make sure we aren't actually the same brain style duplicated lol. Your direct and honest and open in these videos in a way that really inspires me to be myself far more and myself is also direct and blunt and honest but also really caring but in a blunt direct way people miss the good intentions and such caring person you are. I think for me I was traumatized in a lot of ways and built a protective defense that makes me come across a bit like a cactus to others ready to prick them but really I care way more than I let on. Then they get in and I get a bit afraid if they get too close. I have perfection paralysis as well so that really resonated too. All of it. There's an app to Have sighted people help blind people through video Facetime services with things like identifying their socks or telling them if their outfit looks okay or reading a sign that doesn't have brail or whatever that they might need help with... I keep thinking how cool would that be for autism? To somehow find a group of people that isn't automatically mean to autistic people.... I guess that would be the hard part.... But genuinely helpful and kind people or maybe other high functioning autistic people... Just to help me figure out a map or confusing subtext or... Whatever weird thing I might need help with. I don't know the way it works where you live. But probably whoever operates the hub of the bus station has more information about how to translate their map system. Maybe they have an online version. You can compare or lay over Google Maps or something.... And maybe somebody helpful to explain. I too just need a helper to help with executive functions
I am level 2 as well. I am lucky because I have a case manager due to mental health issues.
Great video! Hope you get it all sorted out😁
You feel shit when accepting help because that’s how you’re family programmed your child brain.
Thx for the upload!!
I totly get what you saying IM the same struggle with every thing
Your videos are great. Thank you
Just change the light bulb to something dimmer or a different color? ASD is basically YMMV as a way of life.
I think it's Imposter Syndrome that makes us feel so uncomfortable about accepting help! ❤
Hi Luv great video
This is very helpful, Dana. Thank you very much.
💚
Exactly! What do the levels entail? Does anyone really even have a clue? It seems the levels are as much of a spectrum as autism itself. I was expecting level 1 and I'm level 2 so I kind of felt like I'm doing too well to be classified as such, but then I see deficiencies throughout the day and reconsider. They really should label the levels something like "Able to rely on themselves", "Needs semi-daily help to survive" and "Needs continuous life long care".
That is how they define them. Needs support, requires substantial support, and requiring very substantial support.
honestly it's all subjective. I was given an Autism 1 diagnosis. I prob fall in the space between the two
@@oleonard7319 ....... it's not subjective, it's science. It's a rigid set of standards for each level. Each subject, as in each person, is going to have a different level, or be in a different place on the spectrum, but the three levels are objective.
@@alysonw5371 Even that terminology seems arbitrary to my mind.
@@johnbillings5260 how so? There are autistic people who need life long, daily support, in all that they do. Those that need lifelong daily support with some things, and those that need lifelong generalized support. Within each of those groups, there are varied needs, but the level of support required for those individual needs can fit into one of those categories.
use a smart phone for
directions?
I do, I still get lost 👍🏻
@dersen ok that's how. I generally drive places. the phone tells me turn here turn there.
I mix up my left and my right so I have to be careful with turns.
Be careful with your personal details