The biggest tax I am facing is housing. So much housing is built around community. New builds with shared driveways and neighbourhood fences. But if I want to live in a house without neighbours I have to be a millionaire or self build which is expensive and requires talking to builders, contractors and planning people, all things I don’t want to do. I want to just be in my house and have it quiet. Not have to listen to people slamming their car doors, dogs barking, kids playing etc. I spend my life in headphones and I’d love to just be able to take them off at home but I can’t.
I can relate. Home is where you go to feel safe and comfortable. We've moved so many times trying to find the right place. Somewhere quiet and private. We found that in a rural setting but there are still people issues. You're right, a person would have to invest a lot of money to find a truly peaceful place. I spend my life in earplugs and over ear headphones so I get what you're saying. Take care.
Finally found someone who I can listen to without rolling my eyes or fast forwarding a video to get to the point! Well paced, realistic, no UA-camisms or loud background music. Subscribed 👍🏻
Yeah that stuff is cringe and totally unacceptable as it actually makes it like a trendy style. 🤢 most of those types of autism would find me hostile and offensive.
they only care about themselves. because they can't ever grasp our perspective, while we're forced to adjust to theirs. we need safe spaces for us only. only we are able to understand each other, even if we can have different opinions. we share the autistic experience/perspective.
So relatable. The "I don't have time to do the work" issue in particular - you want me to do the work? It's going to use a LOT of my energy - are you going to pay me to do that work? Because if I'm expected to earn my own living and pay all the extra ADHD and autism taxes, given I ALREADY use more energy just to be in the world, especially around people, then some weeks I have nothing over for laundry or showering after work or at the weekend, never mind doing hard mental, emotional, psychological work AND adding all the work of e.g. doing more cooking from scratch once I "fixed" the brain problems which make prepared food often the only option (or rather, the only alternative to living on white buttered toast and cheese, which is something my brain loves but my gut cannot process). And I have only been able to work 4 days a week for 15 years and now considering having to work less following burnout and dealing with a very ableist boss who is absolutely adamant that most of my issues are due to not spending enough time with other people (people I did not choose, too...). Gah! SO MANY TAXES.
I just got my late autism diagnosis on the 22nd of may 2024. Just 8 days ago. I'm 43 years old. I'm forever grateful for autistic youtubers like you. It means the world to me. Thank you. 🏆❤
And this is why the new proposals for PIP are so wrong. They just don't get that there are all sorts of hidden extras that disabled people do or pay for to cope with life other than personal hygiene, eating and moving around.
Car insurance costs more too especially if you have to drive an automatic car. Automatic cars are more expensive than manual and less available. They're not available for renting. Automatic car insurance is 43.89% more than manual. Putting "conditions declared to dvla but no restrictions" raises the insurance significantly because insurers think we might need accessible equipment, which is very expensive (taxing physically disabled people for their disability too). I imagine it raises even more when you have restrictions on your driving licence and put "declared to dvla with restrictions." Safety package makes the car more expensive too. Living alone is a lot more expensive, but I'm like you. I can't live with other people. We need to hire cleaners to maintain our homes, too. Then, half of autistic people have ADHD and we also suffer with ADHD tax. And if we're women with women's tax on top...
My big autism tax is the time & energy spent on accounting for my every thought and action to the 'Normie Inquisition'. Spoiler alert: they still don't understand after I've delivered a highly articulate and comprehensive explanation for doing some fleeting and trivial thing in a way that differs from them and a large bunch of the population.
Great video Paul, great to see you back in action! On top of the therapy tax is the tax of listening to "experts" tell you things you already know. Or they conformist version of autism and disability you have to go along with. I'm always thinking I can do this job, better than you, you should be paying me to listen to this and expending your energy to seek me out 😂 My own autism tax is not being able to remember important stuff like bill payments and hospital appointments because I'm so tired at the end of each day to process anymore information.
I appreciate you making a video on this. I believe living in a dysfunctional environment and family has taught me to be bothered with these things is seen as a "weakness" or like you're being a little princess, just to be difficult. A lot of my struggles are exactly these small things that build up overtime and eventually make me implode. I have premature signs of aging due to chronic stress and overwhelm caused by the world around me and the people who don't care and don't want to understand. Again, thank you for making videos like this, as it helps autistic people who have masked all their lives and their pain and struggles just to blend in and not be seen, finally feel seen. Take care!
@@AdultwithAutism I haven't even mentioned another tax, which is dealing with family and drama! Had my family (adult sibling with her children) over twice throughout the entire month of august and then again in september. While my brother and my grandma stayed over a month and a half and wrecked havoc on the household's routines with passive aggressiveness, fights, verbal abuse... We already have a lot on our plate and for those of us who haven't been able to cut off some nasty people, we have this tax as well. It caused a lot of issues and lots of meltdowns alone in my room. And a bad haircut! But that might be the ADHD who also got pushed to its limits. Take care!
Love your videos. I like to share them with friends and colleagues as you articulate the issues far better than I can. You have my deepest appreciation for making these videos.
Simply getting an assessment is a huge cost for autistic people. Time, huge emotional effort, mental effort to deal with the waiting times and inaccessible processes. And if you want to avoid some of this, it costs a lot of money. People rarely talk to me on the train.
Thank you for this very helpful insight, Paul. I'm 66 and only discovered that I'm autistic last year. That alone is an awful lot to deal with. This topic, the 'tax' involved with being autistic, makes a tremendous amount of sense. Before I was diagnosed I was continually running into opportunities that I couldn't take advantage of. For a period of 6 months there were many things being offered to me because of my work, but I had to keep rejecting them. I didn't completely understand why I was doing this. I thought there was something wrong with me. Discovering the truth made it clearer. But not easier. All the rest, everything you're listing here, are things I have experienced. I feel that I have to work 1 million times harder than other people to just be comfortable. I can't be anywhere in public without several types of ear protection, affordable clothes are a huge issue, people, sensory issues, all of it. Not to mention supplements and natural medicines because I absolutely can't do traditional meds. It all costs. I sometimes wonder how I survived this long without knowing. This information is another part of the puzzle slotted into place. Take care of yourself and thanks so much again.
Glad to hear the blanket is working for you. Brilliant. Once again, another fab video where you eloquently say the things I can't put into words. You are very much appreciated. Keep smiling! Love from Shropshire!
I resonate so much with most things you have said. My daughter is an autistic teenager. I am undiagnosed but looking into it. I completely agree that autism does cost more in so many ways for so many people. Then we have the government trying to take away assistance or prevent people getting it in the first place 🤯 Anyway take care and keep smiling 😊
Absolutely Bang-On Paul! I'd like to add a Big One to the List: getting Fired or Laid-off or 'Constructively Dismissed' from Jobs. I can count 15 Jobs in my 'Career' where I was 'Actively Discriminated Against' when the Company/Boss I worked for decided to 'downsize'....
Highly recommend the headphones. I have Sony xm3.. also had sennheiser hd 450bt (cheaper). Both great quality. Noise cancelling is helpful .... especially good with sounds you like playing. Helps so much in public. People leave you alone...world seems much more accessible to me. Really helped. I'm late diagnosis. Now I don't go anywhere without the earbuds or headphones. Keeps my blood pressure down.
Thanks for the video! I'd venture to guess that insurance companies know that Autistics do or will have more health problems. Heart problems are one of the leading causes of death for Autistics, I'd say that's probably from a lifetime of stress and the nervous system being in fight or flight constantly. Most of us can't afford a life style that would mitigate some of that stress, so we check out a lot earlier than the general population.
I've been thinking about this a lot lately. High taxation and living expenses are making people stressed and resentful. Then, the cost of doing business or building anything ensures that it needs to be oversubscribed to the point of absurdity to make ends meet. This makes places and activities that could be enjoyable so unpleasant that people avoid them.
In addition to some of the things you've said, my understanding of autism tax are things like subscriptions you need to cancel, but can't because being autistic stops you from communicating with whoever. So you pay that sub, and that is a tax. Ditto, returning something to a shop - can't bring yourself to do it - keep the thing, lose the money, that's a tax. I'd probably also add in there, the hard time you then give yourself for not being able to do these things that end up costing you money, becomes a tax on your mental health. Deep joy!!!
Absolutely. I know that feeling all too well with cancelling or changing contracts at the end of their plan. They make it awkward on purpose needing you to talk to a human instead of an electronic process, meaning a lot of us...me included, just stick with it, getting ripped off in the process 👍🏻
I can certainly relate, especially about work. But I also work in a field that provides aid to people with handicaps and what I see there just underscores that the Tax is on all who are not an average drone. If you think autism apps are expensive, try software for the vision impaired or people with limited use of their body. Any type of handicap really is taxed to the roof.
I'm sure it's across the board for most disabilities with the price tags. People claim to want to help, but want to exploit it along the way. Manipulative people are yet another tax it seems.
The autism tax is real... I can't do people...I have actually physically changed seat on a bus to avoid people. I need to dress nice for work and man I can't wait to go home take the monkey suit off and get into my comfy clothes. I have a strong aversion to certain cookware...it has to fit a criteria and just grab whatever...and of course the cookware I like you guessed it cost a small fortune, I feel you with food I can't eat food some one else prepared...so I am constantly taking tons of time preparing my food, I have to bring my food with me. It's not a money tax ...but definitely a time tax all because i cant deal with someone touching my food. Of course this is just a few... Thanks for sharing.
I asked my doctor if the prosthetics department had any support for sensory overload. I use sunglasses but I don't have anything for my ears. He said no, which is fine, but then he offered me a meditation class. That's like walking around in the rain & then drying off when you get home. There are no options apart from noise cancelling headphones that don't look completely insane. I might get a welder's cap like the ones they use in Japan.
Hi Paul, thank you for explaining about the costs of the autism life experience... I have pretty much always felt like this, but it's so validating and helpful to have clarification. Clothes, food, sounds, smells, people, public, lights, health issues, etc etc etc. It takes a lot of energy to cope with life to be honest. I can't participate in a lot of activities, situations, or go to certain places due to sensory issues, triggers, and even if it's just too hot or loud because it will cause me to have a severe anxiety attack. Whew 😵. So I have been trying very hard to just keep myself as comfortable as possible while dealing with my ASD. It's not easy. I just had my 68th birthday last week and I think 😮 it's amazing I made it, but I have, so it's possible. All the best to you from East Texas, and nice to see you here again Paul. Take good care.. 😊
I agree Bose headphones are overpriced but there are the most comfortable ones I've tried on. That was several years ago though. I'm pretty sure you could find comparable ones these days. Also, if I'm in a mall or cafe I still need to wear my loop earplugs with the headphones to adequately drown out the world.
I have this obsession with red and green whitch also translates into my food choices but there will vegetable that jus t not nice to eat the texture the worst part
I certainly feel these things. But on the other side of the coin, every accommodation is stress imposed on the party providing the accommodation. Currently, we're getting the short-end, so some changes need to be made... anything low cost, low effort... give it to us. Things like allowing us to choose things that improve our situation and are of no consequence to others. Things that take some cost and effort, but they make a huge difference for us... let's work towards having those, too. Then, let's debate the remaining things. I bought a new water heater (boiler for those in the UK) and it has sat there next to the old one for 5 months now. Why? Because I spend so much time thinking about all of the details. I bought it because it should save me money... but it is sitting there costing me money not being installed. I do that with so many things. The tax is real.
I don't like to think of these things as things that society "owes" me, but it's nonetheless useful to frame them as "taxes" anyway. I have only recently realized I'm autistic, and even more recently realized I'm ADHD too. Whenever I go anywhere, I *have* to go in "loops" -- and the "loops" have to be varied -- and sometimes I just explore. That means I'm spending more on gas, and while I don't think of it as a loss, per se, I have less time to do things, and my wife gets frustrated with me. I have a daughter who has recently been diagnosed formally as autistic, and she's driven nuts when I don't go straight home! Right now, I'm considering what I can do to restructure my work life. Ironically enough, I thrived in school environments -- probably because it was a nice combination of structure and novelty for me! -- but I've struggled with finding work (sometimes taking months at a time, even in a good economy), and when I have it, I often get burned out. While struggling to figure this out, however, I'm worried about how to pay bills, when no income is going in. I have wondered if I need to go on disability -- but the diagnostics process is a tax in itself, and I am well aware that I may mask well enough, I wouldn't even be diagnosed as autistic as well -- *particularly* if I try to go through government channels! But despite the masking, the struggles I face are real, and somehow need to be addressed.
The PIP process in England is such a stressful process as it's deeply flawed and doesn't consider Autism well at all. It's very much a 'can you absolutely not do this' or 'you can do this'. Middle ground, rough days and average days are absolutely not considered. It's horrible.
After so many recommendations I finally got myself noise-canceling headphones! Luckily middle-range priced, as it turned out I can't stand using over-ear headphones. Gotta love being autistic mate 😆
I've just got a pair of fully over the ear headphones...I didn't realise until they arrived. They feel massive. I'll give them a shot this week, but they might end up living in a draw for the rest of their days.
Good chat fella. I struggle too with people who just don’t try to be good, helpful, kind and respectful people. Thats why it’s up to us to address the issues. Point out to people who are wasting oxygen. Gets us into trouble a lot but until the errors are fixed and education is shared, life will continue to be a tad irritating. This is Raymie from Rigloo Paul. Control the environment, control the outcome! Is it any wonder my Autism manifested into a survival product? 😂😂 Stay safe fella. Thanks for sharing. 💙🏴
✈OMG the seats on aeroplanes! It's marginally better to have the aisle seat because then you don't have to ask anyone when you want to go to the toilet, but then you can't really sleep because someone else might need you to move so they can get to the toilet.
I don't know if this comment will reach you Paul, but I have the same struggles with bags on top of my eyes too... What helps me is I find that creams that say "firming" or "tightening" then feel kind of cool to the touch going on can provide temporary relief and also help the skin not get irritated as much, I think it literally tightens the skin up a little bit and makes it not as droopy for a little while. The only problem I have is I have to put it on when I know I'm not going to be sweating, if I start sweating the cream can run into my eyes and sting LOL
Hi, I used to go once a week to a group meeting with about eight people where you would talk about your struggles for max. two hours altogether. I got attacked because I can't sit totally quiet without moving my hands and feet and so on. So I had to leave the group. I was the best listener of all of them, there is nothing wrong with my listening skills. This happens to me so often. Thank you for telling about your experiences
In terms of your sitting in the chair - it would bother me if I looked at you throughout your talk (because my brain is looking at and measuring and organising all the visual information) so... I just don't look!
I hear you on the lighting issue, and sleep. I actually like cooking, most of the time. I've had to learn to cook for myself at early age. However I can't eat canned foods, soups or any processed foods. Not saying I'm better than people who eat that stuff, i just find it so offensive. It's healthier and nowadays probably cheaper to eat fresh anyway.
Anker Q20i noise cancelling headphones £35 on Amazon. I can be in same room as washing machine and not hear it. Definitely recommend as cheaper alternative.
For my last birthday, I got some Soundcore: Space One...I think they're called. Absolutely enormous, but still need to test out the noise cancelling option on them 👍🏻
Two that pop right into my head for me are skincare and haircuts Skincare; I absolutely cannot stand most brands in the UK, moisturisers and suncream especially, it's so so greasy feeling that I wanna just vom when I put it on, it feels like I've taken a bath in chip fat and then put clothes on over it. Non greasy products exist!.. for a hugely inflated price or added costs from it being imported from a country where product designers have brains. Haircuts; unsure if this counts as such and its a very personal one to me (and one other friend I think but he's made it work thankfully). I have both sides of my head shaved, all the time, have done since school aside from maybe 2 occasions where I tried to grow it all out to look "normal". You might think it's because it looks cool (it does so that's a perk) but it's a Sensory thing that I didn't realise was a Sensory thing until getting the late diagnosis and thinking of it in that context. I can't stand having hair around my ears, touching my face etc anymore, even in my pfp on here I can see the discomfort in my face about hair touching my face 😂 The thing is, employers do not like this at alllll, they see it as an unprofessional hairstyle and my job opportunities are hugely affected by it, I genuinely have to consider this when trying to plan what career sector I'm gonna try next (as I haven't found one that sticks). I'm sure there's more but right now those are what really sprung to mind for me
A bath in chip fat 😂. Sun cream is just sticky juice, makes you feel disgusting. I shave above my top lip for the same reason you shave the sides of your head...feeling it touch my lip almost gives me palpitations with how much I can't deal with it. But, can't deal without a beard more, so it stays...the hair close to it though, has to go 👍🏻
@@AdultwithAutism I say to my partner and friends with beards all the time I don't know how I'd cope if I was a man and had to deal with facial hair too 🤣 save up to get my face lasered or something Twice now I've shaved my head entirely and my god that is freeing but again it means people treat me so differently, random strangers shouting the same 3 bald woman jokes so I grow it out trying to avoid that and then hate it again, I'm close to doing again with new parent stress really pushing my limit but then I'd be the bald mum and other parents already judge me enough for my appearance and not doing the usual inane parent small talk 🙃
Subbed. No annoying music. Strwight to the point. Like having a serious convo without the "small talk" comedy moments. 42 yo now and not been diagnised. I can relate to all of this
Just passing on my experience - my eczema break outs sometimes happen on my eyes and face, and they feel a lot like what you’re describing with your eyes.
Hi from the other side of the pond, Paul. As far as your videos go, I do fancy giving them a watch. We didn't really use the word fancy in that manner in the stars and I enjoy when you say it 😂
Is it possible to get groceries and other things delivered? To cut down on time around people. Glad a weighted blanket helps. Meal delivery services may help with not having to prepare food, I hate cooking and don’t have the patience and energy. I’m guessing for life insurance, autism is considered a pre existing condition. Neurodivergent tax is frustrating
Unfortunately meal prep / ready meals always taste like microwave meals, and surprisingly...I don't like them either! I've got my days and times for grocery shopping, as I like to choose my own meats to make sure I don't get fatty ones. The joys 👍🏻
21:03 it's almost certainly because of the self-deletion statistics. The data shows it's at least 10 times more common. Autistic people in the UK should apply for PIP. It can effectively offset some of this "autism tax."
YES! "Outside is where people are". The chair?! But I get when someone life is so disruptive and out of control we try to control outward. Sorry to hear about your eye/face
You should make them aware that you're being affected by light pollution and that they need to address it as it's causing you stress. I've just dealt with a light pollution issue in work oddly enough!
Insurance is like betting. You bet them something will go wrong, they bet a certain amount on the odds it won't, and if they're wrong, you get the pot. Charging more for the insurance is probably them getting their own insurance.
Now that I’m unmasking, I’m letting myself sit in all sorts of funky autistic ways. It’s great. I haven’t done that since I was young and was scolded for it.
The way you were sitting in your chair, when you said you didn't care if I was bothered by how you sit in your chair, bothers me. 😅 Thanks for the content, by the way. I used to follow you on my old account, made a new one. Good to see you keeping on. Yarrite
Dont bother with the headphones, just get ear defenders. They're not as "stylish" as headphones but they're effective. Ive also had success with loop earplugs, they saved my marriage because I struggled to sleep in my marriage bed before. I also use a pair of tongs to handle meat because I'll make my hands cracked and dry washing over and over.
There are some weird connections between autism and digestive issues. This may explain why so many autistic people have stumbled on similar diets. Many supposedly healthy foods produce bad reactions and some highly processed foods actually seem to help.
How did the Blue Badge thing work out by the way? I got the application form, and apparently I am supposed to be eligible. But I need a counter-signatory from a healthcare worker. And I need to present a real danger to myself or others because of my condition. 🤔 I just find parking in regular spaces extremely stressful due to my condition. But apparently that doesn't qualify. 🤷♂️
I needed to get something signed by a Doctor, and the Doctor said it's not something they do and the council were wrong. I went back to the council and they ignored me. I need to try again, especially after the week I've had and how much I needed this consideration 👍🏻
The funniest (not really) part about that is that a lot if not all insurances don't pay out for suicides... But somehow it does cost the end-user more to get the insurance when they struggle with suicidality or conditions that increase your risk of developing that struggle. I hope in the future there will be a law about discrimination in insurance policies, where at least presumptions can't be made. I can understand things like assessments needing to be done to check for certain risks, but just saying "eh, this thing we claim has no negative effect on your life whenever it's about benefits has a reeeally negative effect when it comes to us not losing money" is a garbage sentiment.
Another autism tax comes from the intersection of special interests and poor impulse control. This can ultimately make you more employable but it can easily go the other way.
First time hearing about life insurance costing more for people like us. Bloody outrageous and another reason we are at a disadvantage and being preyed on.
I personally don't agree with the levels as they're too rigid and people can very easily fluctuate between them based on their design, interactions and activities. Aspergers was on my original diagnosis.
Unfortunately, I cannot absorb information from books. I end up reading the same line over and over and retain nothing. It's one of things I wish I could do.
Mate, your sensory aversion to cooking odors sounds AWFUL. I've been cooking since I was a little kid and smelling that maillard reaction as the meat sears is one of my favorite things in the entire world.
Paul im glad to hear you got a Weighted Blanket. What brand did you get? I found Baloo is a great brand as its 100% cotton including the filling and it breathes really well even in summer. I have been reducing caffeine or limiting consumption just to the morning since there's a half-life so 1 cup of coffee takes about 10hrs for the body to fully metabolize the caffeine. It sucks at first but seems to be getting better. Also i found Andrew Huberman has a sleep supplement cocktail that seems to work (magnesium l-threonate, l-theanine and apgenin i think) i just take the magnesium l-threonate and the l-theanine with Gaba and this is also helping me fall to sleep faster so check them out. L-threonate is the only magnesium that crosses the blood-brain barrier and its been very helpful. Ive tried to stick to keto or carnivore for brain health and its been tough but i started eating sardines lately with lemon juice and salt and olives and red onions.. I found the Omega 3s have really what ive missed in my diet for energy B12 and getting what i need ad a woman. I know not many like them but if you can try them they are alot cheaper and easier to eat without cooking and plus we need more Omega-3s to keep inflammation down and for brain health. Great to hear from you.. and the tax i didn't think of ... mind boggling but you're spot on as always. ❤
Unsure of the brand of weighted blanket, it was cotton though. It was off Amazon when they had an offer on. I need one that's cooler for summer times though.
The biggest tax I am facing is housing. So much housing is built around community. New builds with shared driveways and neighbourhood fences. But if I want to live in a house without neighbours I have to be a millionaire or self build which is expensive and requires talking to builders, contractors and planning people, all things I don’t want to do. I want to just be in my house and have it quiet. Not have to listen to people slamming their car doors, dogs barking, kids playing etc. I spend my life in headphones and I’d love to just be able to take them off at home but I can’t.
I can relate. Home is where you go to feel safe and comfortable. We've moved so many times trying to find the right place. Somewhere quiet and private. We found that in a rural setting but there are still people issues. You're right, a person would have to invest a lot of money to find a truly peaceful place. I spend my life in earplugs and over ear headphones so I get what you're saying. Take care.
Finally found someone who I can listen to without rolling my eyes or fast forwarding a video to get to the point! Well paced, realistic, no UA-camisms or loud background music. Subscribed 👍🏻
Ah, many thanks 👍🏻
Feel the same. Autism but...not covered in rainbows and capes.
@@wilkothewilkoman Exactly
@@wilkothewilkoman and fairies and princesses and cuteness and squeeeee!
Exactly.
Yeah that stuff is cringe and totally unacceptable as it actually makes it like a trendy style. 🤢 most of those types of autism would find me hostile and offensive.
The truth is nobody cares were autistic, we just have to suffer 😢
they only care about themselves. because they can't ever grasp our perspective, while we're forced to adjust to theirs. we need safe spaces for us only. only we are able to understand each other, even if we can have different opinions. we share the autistic experience/perspective.
that's why I've not pushed for official diagnosis or told anyone. no one cares, the world carries on, nothing will change.
in fact I told one person I've known for years. told them by email to test a reaction, didn't get a reply. so that proves it.
Yep I've definitely learned ppl don't give a shit and they keep expecting you to think and behave like they do
Yep
So relatable. The "I don't have time to do the work" issue in particular - you want me to do the work? It's going to use a LOT of my energy - are you going to pay me to do that work? Because if I'm expected to earn my own living and pay all the extra ADHD and autism taxes, given I ALREADY use more energy just to be in the world, especially around people, then some weeks I have nothing over for laundry or showering after work or at the weekend, never mind doing hard mental, emotional, psychological work AND adding all the work of e.g. doing more cooking from scratch once I "fixed" the brain problems which make prepared food often the only option (or rather, the only alternative to living on white buttered toast and cheese, which is something my brain loves but my gut cannot process). And I have only been able to work 4 days a week for 15 years and now considering having to work less following burnout and dealing with a very ableist boss who is absolutely adamant that most of my issues are due to not spending enough time with other people (people I did not choose, too...). Gah! SO MANY TAXES.
I just got my late autism diagnosis on the 22nd of may 2024. Just 8 days ago. I'm 43 years old. I'm forever grateful for autistic youtubers like you. It means the world to me. Thank you. 🏆❤
Ah many thanks 👍🏻
And this is why the new proposals for PIP are so wrong. They just don't get that there are all sorts of hidden extras that disabled people do or pay for to cope with life other than personal hygiene, eating and moving around.
They don't, and it's deeply frustrating. I'm going to try the process and fully cover it, to highlight all its flaws if for nothing else.
Car insurance costs more too especially if you have to drive an automatic car. Automatic cars are more expensive than manual and less available. They're not available for renting. Automatic car insurance is 43.89% more than manual. Putting "conditions declared to dvla but no restrictions" raises the insurance significantly because insurers think we might need accessible equipment, which is very expensive (taxing physically disabled people for their disability too). I imagine it raises even more when you have restrictions on your driving licence and put "declared to dvla with restrictions." Safety package makes the car more expensive too. Living alone is a lot more expensive, but I'm like you. I can't live with other people. We need to hire cleaners to maintain our homes, too. Then, half of autistic people have ADHD and we also suffer with ADHD tax. And if we're women with women's tax on top...
Yes even an automatic car is on average a £1,000 more than the equivalent manual one.
I didn't know an automatic was more in insurance by almost half! That's insane.
Yes and they also use more fuel
My big autism tax is the time & energy spent on accounting for my every thought and action to the 'Normie Inquisition'. Spoiler alert: they still don't understand after I've delivered a highly articulate and comprehensive explanation for doing some fleeting and trivial thing in a way that differs from them and a large bunch of the population.
Oh how much do I know how that feels!
Great video Paul, great to see you back in action!
On top of the therapy tax is the tax of listening to "experts" tell you things you already know. Or they conformist version of autism and disability you have to go along with. I'm always thinking I can do this job, better than you, you should be paying me to listen to this and expending your energy to seek me out 😂
My own autism tax is not being able to remember important stuff like bill payments and hospital appointments because I'm so tired at the end of each day to process anymore information.
Definitely the reason people should seek out therapists who are Autistic. But I know they are as rare as rocking horse poop.
I appreciate you making a video on this. I believe living in a dysfunctional environment and family has taught me to be bothered with these things is seen as a "weakness" or like you're being a little princess, just to be difficult. A lot of my struggles are exactly these small things that build up overtime and eventually make me implode. I have premature signs of aging due to chronic stress and overwhelm caused by the world around me and the people who don't care and don't want to understand.
Again, thank you for making videos like this, as it helps autistic people who have masked all their lives and their pain and struggles just to blend in and not be seen, finally feel seen.
Take care!
Premature signs of aging has hit me hard over the last couple of years. I hear you there!
@@AdultwithAutism I haven't even mentioned another tax, which is dealing with family and drama! Had my family (adult sibling with her children) over twice throughout the entire month of august and then again in september. While my brother and my grandma stayed over a month and a half and wrecked havoc on the household's routines with passive aggressiveness, fights, verbal abuse... We already have a lot on our plate and for those of us who haven't been able to cut off some nasty people, we have this tax as well. It caused a lot of issues and lots of meltdowns alone in my room. And a bad haircut! But that might be the ADHD who also got pushed to its limits.
Take care!
Love your videos. I like to share them with friends and colleagues as you articulate the issues far better than I can. You have my deepest appreciation for making these videos.
Thank you, I appreciate that 👍🏻
Simply getting an assessment is a huge cost for autistic people.
Time, huge emotional effort, mental effort to deal with the waiting times and inaccessible processes. And if you want to avoid some of this, it costs a lot of money.
People rarely talk to me on the train.
True, the beginning of that process for me was very taxing. Not being listened to by the GP
Thank you for this very helpful insight, Paul. I'm 66 and only discovered that I'm autistic last year. That alone is an awful lot to deal with. This topic, the 'tax' involved with being autistic, makes a tremendous amount of sense. Before I was diagnosed I was continually running into opportunities that I couldn't take advantage of. For a period of 6 months there were many things being offered to me because of my work, but I had to keep rejecting them. I didn't completely understand why I was doing this. I thought there was something wrong with me. Discovering the truth made it clearer. But not easier. All the rest, everything you're listing here, are things I have experienced. I feel that I have to work 1 million times harder than other people to just be comfortable. I can't be anywhere in public without several types of ear protection, affordable clothes are a huge issue, people, sensory issues, all of it. Not to mention supplements and natural medicines because I absolutely can't do traditional meds. It all costs. I sometimes wonder how I survived this long without knowing. This information is another part of the puzzle slotted into place. Take care of yourself and thanks so much again.
Thanks for sharing
Glad to hear the blanket is working for you. Brilliant. Once again, another fab video where you eloquently say the things I can't put into words. You are very much appreciated. Keep smiling! Love from Shropshire!
Thank you, and not too far from me these days 👍🏻
I resonate so much with most things you have said.
My daughter is an autistic teenager. I am undiagnosed but looking into it.
I completely agree that autism does cost more in so many ways for so many people.
Then we have the government trying to take away assistance or prevent people getting it in the first place 🤯
Anyway take care and keep smiling 😊
Absolutely Bang-On Paul! I'd like to add a Big One to the List: getting Fired or Laid-off or 'Constructively Dismissed' from Jobs. I can count 15 Jobs in my 'Career' where I was 'Actively Discriminated Against' when the Company/Boss I worked for decided to 'downsize'....
True. Or where you just don't 'fut the mold', and they drive you out
29:26 Omgosh, everything you talked about 💯
Highly recommend the headphones. I have Sony xm3.. also had sennheiser hd 450bt (cheaper). Both great quality.
Noise cancelling is helpful .... especially good with sounds you like playing. Helps so much in public. People leave you alone...world seems much more accessible to me.
Really helped. I'm late diagnosis. Now I don't go anywhere without the earbuds or headphones. Keeps my blood pressure down.
Thanks for the video! I'd venture to guess that insurance companies know that Autistics do or will have more health problems. Heart problems are one of the leading causes of death for Autistics, I'd say that's probably from a lifetime of stress and the nervous system being in fight or flight constantly. Most of us can't afford a life style that would mitigate some of that stress, so we check out a lot earlier than the general population.
Yep, don't disagree with that. The stress my body has been under, I'm surprised I've made it this far.
@@AdultwithAutism same here. :-/
I've been thinking about this a lot lately. High taxation and living expenses are making people stressed and resentful. Then, the cost of doing business or building anything ensures that it needs to be oversubscribed to the point of absurdity to make ends meet. This makes places and activities that could be enjoyable so unpleasant that people avoid them.
In addition to some of the things you've said, my understanding of autism tax are things like subscriptions you need to cancel, but can't because being autistic stops you from communicating with whoever. So you pay that sub, and that is a tax. Ditto, returning something to a shop - can't bring yourself to do it - keep the thing, lose the money, that's a tax. I'd probably also add in there, the hard time you then give yourself for not being able to do these things that end up costing you money, becomes a tax on your mental health. Deep joy!!!
Absolutely. I know that feeling all too well with cancelling or changing contracts at the end of their plan. They make it awkward on purpose needing you to talk to a human instead of an electronic process, meaning a lot of us...me included, just stick with it, getting ripped off in the process 👍🏻
I can certainly relate, especially about work. But I also work in a field that provides aid to people with handicaps and what I see there just underscores that the Tax is on all who are not an average drone. If you think autism apps are expensive, try software for the vision impaired or people with limited use of their body. Any type of handicap really is taxed to the roof.
I'm sure it's across the board for most disabilities with the price tags. People claim to want to help, but want to exploit it along the way. Manipulative people are yet another tax it seems.
The autism tax is real... I can't do people...I have actually physically changed seat on a bus to avoid people. I need to dress nice for work and man I can't wait to go home take the monkey suit off and get into my comfy clothes. I have a strong aversion to certain cookware...it has to fit a criteria and just grab whatever...and of course the cookware I like you guessed it cost a small fortune, I feel you with food I can't eat food some one else prepared...so I am constantly taking tons of time preparing my food, I have to bring my food with me. It's not a money tax ...but definitely a time tax all because i cant deal with someone touching my food. Of course this is just a few... Thanks for sharing.
I asked my doctor if the prosthetics department had any support for sensory overload. I use sunglasses but I don't have anything for my ears. He said no, which is fine, but then he offered me a meditation class. That's like walking around in the rain & then drying off when you get home. There are no options apart from noise cancelling headphones that don't look completely insane. I might get a welder's cap like the ones they use in Japan.
Loop earplugs work pretty well for sound, and are invisible from the front. I've been dependent on them for years now
What about concert earplugs? Very small and discrete and are only meant to reduce sound not eliminate it.
Hi Paul, thank you for explaining about the costs of the autism life experience... I have pretty much always felt like this, but it's so validating and helpful to have clarification. Clothes, food, sounds, smells, people, public, lights, health issues, etc etc etc. It takes a lot of energy to cope with life to be honest. I can't participate in a lot of activities, situations, or go to certain places due to sensory issues, triggers, and even if it's just too hot or loud because it will cause me to have a severe anxiety attack. Whew 😵. So I have been trying very hard to just keep myself as comfortable as possible while dealing with my ASD. It's not easy. I just had my 68th birthday last week and I think 😮 it's amazing I made it, but I have, so it's possible. All the best to you from East Texas, and nice to see you here again Paul. Take good care.. 😊
Ah, happy belated birthday 👍🏻
I agree Bose headphones are overpriced but there are the most comfortable ones I've tried on. That was several years ago though. I'm pretty sure you could find comparable ones these days. Also, if I'm in a mall or cafe I still need to wear my loop earplugs with the headphones to adequately drown out the world.
I've just got some headphones from Anker with noise cancelling on them, just need to try them now 👍🏻
I recommend OSHA approved earplug headphones. I got a pair for a previous job and I use them all the time now. Works wonders.
Good to know, thanks
I have this obsession with red and green whitch also translates into my food choices but there will vegetable that jus t not nice to eat the texture the worst part
I certainly feel these things. But on the other side of the coin, every accommodation is stress imposed on the party providing the accommodation. Currently, we're getting the short-end, so some changes need to be made... anything low cost, low effort... give it to us. Things like allowing us to choose things that improve our situation and are of no consequence to others. Things that take some cost and effort, but they make a huge difference for us... let's work towards having those, too. Then, let's debate the remaining things. I bought a new water heater (boiler for those in the UK) and it has sat there next to the old one for 5 months now. Why? Because I spend so much time thinking about all of the details. I bought it because it should save me money... but it is sitting there costing me money not being installed. I do that with so many things. The tax is real.
I don't like to think of these things as things that society "owes" me, but it's nonetheless useful to frame them as "taxes" anyway. I have only recently realized I'm autistic, and even more recently realized I'm ADHD too. Whenever I go anywhere, I *have* to go in "loops" -- and the "loops" have to be varied -- and sometimes I just explore. That means I'm spending more on gas, and while I don't think of it as a loss, per se, I have less time to do things, and my wife gets frustrated with me. I have a daughter who has recently been diagnosed formally as autistic, and she's driven nuts when I don't go straight home!
Right now, I'm considering what I can do to restructure my work life. Ironically enough, I thrived in school environments -- probably because it was a nice combination of structure and novelty for me! -- but I've struggled with finding work (sometimes taking months at a time, even in a good economy), and when I have it, I often get burned out. While struggling to figure this out, however, I'm worried about how to pay bills, when no income is going in.
I have wondered if I need to go on disability -- but the diagnostics process is a tax in itself, and I am well aware that I may mask well enough, I wouldn't even be diagnosed as autistic as well -- *particularly* if I try to go through government channels! But despite the masking, the struggles I face are real, and somehow need to be addressed.
The PIP process in England is such a stressful process as it's deeply flawed and doesn't consider Autism well at all. It's very much a 'can you absolutely not do this' or 'you can do this'. Middle ground, rough days and average days are absolutely not considered. It's horrible.
After so many recommendations I finally got myself noise-canceling headphones! Luckily middle-range priced, as it turned out I can't stand using over-ear headphones.
Gotta love being autistic mate 😆
I've just got a pair of fully over the ear headphones...I didn't realise until they arrived. They feel massive. I'll give them a shot this week, but they might end up living in a draw for the rest of their days.
@@AdultwithAutism Hope you don't end up hating them but yeah, really no such thing as a "universal accommodation" for us 😅
Good chat fella. I struggle too with people who just don’t try to be good, helpful, kind and respectful people. Thats why it’s up to us to address the issues. Point out to people who are wasting oxygen. Gets us into trouble a lot but until the errors are fixed and education is shared, life will continue to be a tad irritating.
This is Raymie from Rigloo Paul.
Control the environment, control the outcome!
Is it any wonder my Autism manifested into a survival product? 😂😂
Stay safe fella. Thanks for sharing. 💙🏴
Hi Raymie. Fully agree that with a controlled environment, your outcomes become a lot more favourable 👍🏻
✈OMG the seats on aeroplanes! It's marginally better to have the aisle seat because then you don't have to ask anyone when you want to go to the toilet, but then you can't really sleep because someone else might need you to move so they can get to the toilet.
I don't mind moving for people, but HATE asking people to move. I'd rather hold it and feel sick for the rest of the flight 😂
I don't know if this comment will reach you Paul, but I have the same struggles with bags on top of my eyes too... What helps me is I find that creams that say "firming" or "tightening" then feel kind of cool to the touch going on can provide temporary relief and also help the skin not get irritated as much, I think it literally tightens the skin up a little bit and makes it not as droopy for a little while. The only problem I have is I have to put it on when I know I'm not going to be sweating, if I start sweating the cream can run into my eyes and sting LOL
I'm sure that'd sting when sweating! I'll maybe give it a shot though 👍🏻
Hi, I used to go once a week to a group meeting with about eight people where you would talk about your struggles for max. two hours altogether.
I got attacked because I can't sit totally quiet without moving my hands and feet and so on.
So I had to leave the group.
I was the best listener of all of them, there is nothing wrong with my listening skills.
This happens to me so often.
Thank you for telling about your experiences
It's a shame you had to leave over something that didn't impact the reason for the group.
Just found your channel! You're great to listen to and thank you for sharing!
Many thanks 👍🏻
In terms of your sitting in the chair - it would bother me if I looked at you throughout your talk (because my brain is looking at and measuring and organising all the visual information) so... I just don't look!
Fair enough!
I hear you on the lighting issue, and sleep. I actually like cooking, most of the time. I've had to learn to cook for myself at early age. However I can't eat canned foods, soups or any processed foods. Not saying I'm better than people who eat that stuff, i just find it so offensive. It's healthier and nowadays probably cheaper to eat fresh anyway.
Anker Q20i noise cancelling headphones £35 on Amazon. I can be in same room as washing machine and not hear it.
Definitely recommend as cheaper alternative.
For my last birthday, I got some Soundcore: Space One...I think they're called. Absolutely enormous, but still need to test out the noise cancelling option on them 👍🏻
Two that pop right into my head for me are skincare and haircuts
Skincare; I absolutely cannot stand most brands in the UK, moisturisers and suncream especially, it's so so greasy feeling that I wanna just vom when I put it on, it feels like I've taken a bath in chip fat and then put clothes on over it. Non greasy products exist!.. for a hugely inflated price or added costs from it being imported from a country where product designers have brains.
Haircuts; unsure if this counts as such and its a very personal one to me (and one other friend I think but he's made it work thankfully). I have both sides of my head shaved, all the time, have done since school aside from maybe 2 occasions where I tried to grow it all out to look "normal". You might think it's because it looks cool (it does so that's a perk) but it's a Sensory thing that I didn't realise was a Sensory thing until getting the late diagnosis and thinking of it in that context.
I can't stand having hair around my ears, touching my face etc anymore, even in my pfp on here I can see the discomfort in my face about hair touching my face 😂
The thing is, employers do not like this at alllll, they see it as an unprofessional hairstyle and my job opportunities are hugely affected by it, I genuinely have to consider this when trying to plan what career sector I'm gonna try next (as I haven't found one that sticks).
I'm sure there's more but right now those are what really sprung to mind for me
A bath in chip fat 😂. Sun cream is just sticky juice, makes you feel disgusting.
I shave above my top lip for the same reason you shave the sides of your head...feeling it touch my lip almost gives me palpitations with how much I can't deal with it. But, can't deal without a beard more, so it stays...the hair close to it though, has to go 👍🏻
@@AdultwithAutism I say to my partner and friends with beards all the time I don't know how I'd cope if I was a man and had to deal with facial hair too 🤣 save up to get my face lasered or something
Twice now I've shaved my head entirely and my god that is freeing but again it means people treat me so differently, random strangers shouting the same 3 bald woman jokes so I grow it out trying to avoid that and then hate it again, I'm close to doing again with new parent stress really pushing my limit but then I'd be the bald mum and other parents already judge me enough for my appearance and not doing the usual inane parent small talk 🙃
Subbed. No annoying music. Strwight to the point. Like having a serious convo without the "small talk" comedy moments. 42 yo now and not been diagnised. I can relate to all of this
Just passing on my experience - my eczema break outs sometimes happen on my eyes and face, and they feel a lot like what you’re describing with your eyes.
Hi from the other side of the pond, Paul. As far as your videos go, I do fancy giving them a watch. We didn't really use the word fancy in that manner in the stars and I enjoy when you say it 😂
I would say 'if my videos tickle your pickle'...but innuendos and all that 👍🏻
thank you for talking about it. I relate to a lot!
No worries 👍🏻
Your videos inspired me to get a private assessment and I've just been diagnosed with autism aged 52
Best of luck 👍🏻
Is it possible to get groceries and other things delivered? To cut down on time around people. Glad a weighted blanket helps. Meal delivery services may help with not having to prepare food, I hate cooking and don’t have the patience and energy. I’m guessing for life insurance, autism is considered a pre existing condition. Neurodivergent tax is frustrating
Unfortunately meal prep / ready meals always taste like microwave meals, and surprisingly...I don't like them either! I've got my days and times for grocery shopping, as I like to choose my own meats to make sure I don't get fatty ones. The joys 👍🏻
21:03 it's almost certainly because of the self-deletion statistics. The data shows it's at least 10 times more common.
Autistic people in the UK should apply for PIP. It can effectively offset some of this "autism tax."
I'll have to wait on PIP until the government have stopped messing with the process to try and rule us out...
Appreciate your Content Paul
👍🏼😀👍🏼 Relatable🇺🇸
Many thanks 👍🏻
Another great video.
i have same food habits , no salads, fruits, meats , all veg apart from potatoes not boiled or new potatoes , and peas are ok ha:)
Haha, peas on a rare occasion for me.
@@AdultwithAutism what supplements do you take for the extra nutrition? do you use anything else to substitute the things you dont eat :)
I use Kvidio headphones. $30 and under and are phenomenal. Noice canceling and sound and fit better than $180 skullcandy’s I have.
YES! "Outside is where people are". The chair?! But I get when someone life is so disruptive and out of control we try to control outward. Sorry to hear about your eye/face
Thanks 👍🏻
Your videos are amazing! Bit behind though due to UA-cam not notifying me :(
Thank you. I think you have to unsubscribe, then subscribe again. A lot of people aren't getting the notifications for some reason 🤔
It’s reached the time of year when Autism makes you feel even smaller than usual
Very true
The council put up a street light right outside my bedroom and it is one of those L.E.D lights it drives me f@*#ing crazy!
You should make them aware that you're being affected by light pollution and that they need to address it as it's causing you stress. I've just dealt with a light pollution issue in work oddly enough!
Insurance is like betting. You bet them something will go wrong, they bet a certain amount on the odds it won't, and if they're wrong, you get the pot. Charging more for the insurance is probably them getting their own insurance.
Hope u doing ok :-)
Not too shabby thanks 👍🏻
Now that I’m unmasking, I’m letting myself sit in all sorts of funky autistic ways. It’s great. I haven’t done that since I was young and was scolded for it.
Living true to your design is always much more relaxing 👍🏻
The way you were sitting in your chair, when you said you didn't care if I was bothered by how you sit in your chair, bothers me. 😅
Thanks for the content, by the way. I used to follow you on my old account, made a new one. Good to see you keeping on. Yarrite
Haha, the joys of poor posture
Dont bother with the headphones, just get ear defenders. They're not as "stylish" as headphones but they're effective. Ive also had success with loop earplugs, they saved my marriage because I struggled to sleep in my marriage bed before. I also use a pair of tongs to handle meat because I'll make my hands cracked and dry washing over and over.
I've heard the loop earplugs are good, I might have to try a pair in the future. Glad they worked for you 👍🏻
❤❤❤
Thank you kindly 👍🏻
There are some weird connections between autism and digestive issues. This may explain why so many autistic people have stumbled on similar diets. Many supposedly healthy foods produce bad reactions and some highly processed foods actually seem to help.
Definitely the case with me.
How did the Blue Badge thing work out by the way?
I got the application form, and apparently I am supposed to be eligible.
But I need a counter-signatory from a healthcare worker. And I need to present a real danger to myself or others because of my condition. 🤔
I just find parking in regular spaces extremely stressful due to my condition.
But apparently that doesn't qualify.
🤷♂️
I needed to get something signed by a Doctor, and the Doctor said it's not something they do and the council were wrong. I went back to the council and they ignored me. I need to try again, especially after the week I've had and how much I needed this consideration 👍🏻
@@AdultwithAutism Yeah my council said "healthcare professional except a GP".
Because doctors aren't healthcare professionals of course.
Life insurance cost more because apparently suicide risk is higher for autistics. That’s what I’ve read as the reason anyway
It's also more for left-handed people...so left handed Autistic people will be priced out!
The funniest (not really) part about that is that a lot if not all insurances don't pay out for suicides... But somehow it does cost the end-user more to get the insurance when they struggle with suicidality or conditions that increase your risk of developing that struggle. I hope in the future there will be a law about discrimination in insurance policies, where at least presumptions can't be made. I can understand things like assessments needing to be done to check for certain risks, but just saying "eh, this thing we claim has no negative effect on your life whenever it's about benefits has a reeeally negative effect when it comes to us not losing money" is a garbage sentiment.
@@AdultwithAutismI hadn't considered life-insurance, but I guess that's me forfeit, then...😳🤨🤔🙄😏💩☠🙈👌👍#Grand (ironic)
Another autism tax comes from the intersection of special interests and poor impulse control. This can ultimately make you more employable but it can easily go the other way.
It's just getting past the personality tests! Sorry, I mean interviews 😂
First time hearing about life insurance costing more for people like us. Bloody outrageous and another reason we are at a disadvantage and being preyed on.
Sure is.
Do you tell employers, friends, or anyone you’re autistic?
I do now. I didn't at first.
Do you have ASD level 1 without Aspergers?
I personally don't agree with the levels as they're too rigid and people can very easily fluctuate between them based on their design, interactions and activities.
Aspergers was on my original diagnosis.
I agree. I myself have ASD level 1 Autism and ADD.
You are actually talking about the impact of Capitalism on Autistic people. Read Robert Chapman’s ‘Empire of Normality’ Book.
Unfortunately, I cannot absorb information from books. I end up reading the same line over and over and retain nothing. It's one of things I wish I could do.
I've never had anyone sit next to me on a bus talk about pigeons and pencils sharpers, I did have one lady began breast feeding her baby though.
I'd need a week off work to recover if that happened to me.
Mate, your sensory aversion to cooking odors sounds AWFUL. I've been cooking since I was a little kid and smelling that maillard reaction as the meat sears is one of my favorite things in the entire world.
It is a nightmare. Glad you're the opposite!
Paul im glad to hear you got a Weighted Blanket. What brand did you get? I found Baloo is a great brand as its 100% cotton including the filling and it breathes really well even in summer. I have been reducing caffeine or limiting consumption just to the morning since there's a half-life so 1 cup of coffee takes about 10hrs for the body to fully metabolize the caffeine. It sucks at first but seems to be getting better. Also i found Andrew Huberman has a sleep supplement cocktail that seems to work (magnesium l-threonate, l-theanine and apgenin i think) i just take the magnesium l-threonate and the l-theanine with Gaba and this is also helping me fall to sleep faster so check them out. L-threonate is the only magnesium that crosses the blood-brain barrier and its been very helpful.
Ive tried to stick to keto or carnivore for brain health and its been tough but i started eating sardines lately with lemon juice and salt and olives and red onions.. I found the Omega 3s have really what ive missed in my diet for energy B12 and getting what i need ad a woman. I know not many like them but if you can try them they are alot cheaper and easier to eat without cooking and plus we need more Omega-3s to keep inflammation down and for brain health.
Great to hear from you.. and the tax i didn't think of ... mind boggling but you're spot on as always. ❤
Unsure of the brand of weighted blanket, it was cotton though. It was off Amazon when they had an offer on. I need one that's cooler for summer times though.