Autism the thread

[Matt N]

I'm also considering making a potentially longer-term change to my fashion choices, and I'll freely admit I'm probably spending an inordinate amount of time thinking about it, but I wonder if that's just me trying to get myself used to it if/when I eventually commit to it. I guess that's probably an autistic thing, and I'd be intrigued to know if any of the other autistic people on here do the same (wouldn't surprise me if it's the case, in fairness).

I apologise for my lateness here, Jonathan, but out of interest; if you don’t mind me asking, what sort of change are you specifically thinking about? Is it a smaller change, such as wearing a different type of clothing, or is it something bigger or more permanent?

I’m not trying to be nosy or anything, for clarity, and if you don’t feel comfortable saying, don’t say anything to me, but I was only curious to know because for me (and possibly some others too), the level of thought put into it might vary dependant on the scale of change and whether or not it’s reversible. I’ll admit that in most cases, I would ponder some sort of long-term change for a fair amount of time before actually doing it, but I think that’s more down to me being indecisive than anything to do with my autism…

Good to hear about your recent job experience, though; reassuring to hear about how accepting and autism-friendly your employer seemingly is!

 

[Jonathan]

I apologise for my lateness here, Jonathan, but out of interest; if you don’t mind me asking, what sort of change are you specifically thinking about? Is it a smaller change, such as wearing a different type of clothing, or is it something bigger or more permanent?

Bit of both, really. Some slightly different clothing to what I usually wear is on the cards. As for anything more permanent? Well, I've already mentioned in another thread that I'm planning on getting another tattoo by the time I turn 30 in November, if that's any indication.

I’m not trying to be nosy or anything, for clarity, and if you don’t feel comfortable saying, don’t say anything to me, but I was only curious to know because for me (and possibly some others too), the level of thought put into it might vary dependant on the scale of change and whether or not it’s reversible. I’ll admit that in most cases, I would ponder some sort of long-term change for a fair amount of time before actually doing it, but I think that’s more down to me being indecisive than anything to do with my autism…

It's hard to know how much of our issues with big decisions is due to being indecisive and how much is due to autism. I think it's probably a combination of both, to be fair. The main things for me are the scale of the change and whether it's reversible or not, whilst also considering the long-term benefits and/or enjoyment it'd bring me as well.

Good to hear about your recent job experience, though; reassuring to hear about how accepting and autism-friendly your employer seemingly is!

They're great. I made a couple of references to my autism before making it a bit more explicit among my class of trainees, and they seemed rather surprised, but never thought of it as a problem. What's also good is that I made passing remarks about my sexuality within the first couple of days, and nobody was bothered. Ended up being a topic of discussion during one or two lunches, and they were all so wonderful about it. I just wish it were that easy for me to tell everyone in my life that I'm gay tbh.

 

[Matt N]

If you're pondering a tattoo, then that's certainly the sort of thing I'd be mulling over a fair amount myself; you certainly aren't alone there! I would never personally get a tattoo, but talking hypothetically, that's definitely the sort of thing I'd be doing a lot of mulling over before doing for sure!

In terms of the change in the type of clothes you wear; that's something I'd personally give less thought to. If you don't think the change suits you, then you can quite easily go back to wearing what you wore before. Unless this is quite literally a case of getting rid of your entire current wardrobe and starting afresh with a completely different style... I'd be mulling over that, for sure, as once you've gotten rid of things, they're quite hard to get back!

 

[Jonathan]

If you're pondering a tattoo, then that's certainly the sort of thing I'd be mulling over a fair amount myself; you certainly aren't alone there! I would never personally get a tattoo, but talking hypothetically, that's definitely the sort of thing I'd be doing a lot of mulling over before doing for sure!

In terms of the change in the type of clothes you wear; that's something I'd personally give less thought to. If you don't think the change suits you, then you can quite easily go back to wearing what you wore before. Unless this is quite literally a case of getting rid of your entire current wardrobe and starting afresh with a completely different style... I'd be mulling over that, for sure, as once you've gotten rid of things, they're quite hard to get back!

Oh, trust me when I say I've thought very long and hard about this next tattoo. I mean, I'd say it's quite an important thing to consider when it comes to getting something so permanent. Some people will get tattoos on impulse, which is fine for them, but not for me. To each their own, I guess.

Regarding clothing, I'm not going to get rid of everything I have at the moment. Why would I if it's still perfectly wearable and still fits me fine? It'll just be a case of replacing what I wear now with what I want to start wearing instead. If I like it, then great. If not, then it's not going to be the end of the world, other than having wasted a bit of money. The only problem will be if stuff's too tight in certain areas, but that's just something I'll have to deal with, and hope that I don't have some kind of sensory overload-related meltdown...which is what nearly happened the other day when I was in M&S and noticed my boxer-briefs had unexpectedly ridden up my leg.

 

[Alolan Diglett]

Morning everyone. I’ve been out of action for a while so just caught up on the thread. I’m proud of everyone for being so open and honest in discussing this subject.
Can I ask those with autism a question? No judgement and if you don’t want to answer don’t feel pressure but.
Do you claim benefits, more specifically PIP or similar? is this awarded purely for autistism or are there other disabilities also considered?
for clarity I am autistic as you all are. I work as most if not all do. I am a social worker dealing with learning disabilities. Most of my service user base receive benefits but they all have quite difficult complicating factors. So most if not all receive PIP.
My reason for asking is within the last year I’ve gotten worse. I am able to mask most of my difficulties during work time, trying to remain professional and it is helped that we are still mainly working at home and at distance. However outside of work hours I cannot leave the house, the world becomes a haze, ears buzz and anxiety sets in. I’m neglecting self including food and cooking due to the scary symptoms or pure indifference. Even five minutes to microwave a bing meal is taking an exceptional effort and realistically I just go without even this.
I’m aware that there’s probably something else going off in addition to autism - depression and/or anxiety probably and talking with my doctor. However I also know what a meltdown feels like. I know that I am probably exhausted from masking eight hours a day and am considering a different job. my reason for considering an application is not financial though, whilst I know I’m already protected under Equalities Act, I am finding my work and other support agencies seem to prioritise or only speak to those who have a recognition in the form of a benefit payment - so it is that kind of protection, support and additional reasoning I am hoping to obtain rather than to £50 or so that PIP is.
anyone else in this somewhat trying situation?

 

[Matt N]

Morning everyone. I’ve been out of action for a while so just caught up on the thread. I’m proud of everyone for being so open and honest in discussing this subject.
Can I ask those with autism a question? No judgement and if you don’t want to answer don’t feel pressure but.
Do you claim benefits, more specifically PIP or similar? is this awarded purely for autistism or are there other disabilities also considered?
for clarity I am autistic as you all are. I work as most if not all do. I am a social worker dealing with learning disabilities. Most of my service user base receive benefits but they all have quite difficult complicating factors. So most if not all receive PIP.
My reason for asking is within the last year I’ve gotten worse. I am able to mask most of my difficulties during work time, trying to remain professional and it is helped that we are still mainly working at home and at distance. However outside of work hours I cannot leave the house, the world becomes a haze, ears buzz and anxiety sets in. I’m neglecting self including food and cooking due to the scary symptoms or pure indifference. Even five minutes to microwave a bing meal is taking an exceptional effort and realistically I just go without even this.
I’m aware that there’s probably something else going off in addition to autism - depression and/or anxiety probably and talking with my doctor. However I also know what a meltdown feels like. I know that I am probably exhausted from masking eight hours a day and am considering a different job. my reason for considering an application is not financial though, whilst I know I’m already protected under Equalities Act, I am finding my work and other support agencies seem to prioritise or only speak to those who have a recognition in the form of a benefit payment - so it is that kind of protection, support and additional reasoning I am hoping to obtain rather than to £50 or so that PIP is.
anyone else in this somewhat trying situation?

My parents claimed DLA on my behalf until I was 16, which was diagnosis-based; my autism alone got the DLA granted.

Once I turned 16, my DLA ended, and I was encouraged to begin the process of applying for PIP by my parents. I did, however I didn’t get it.

What you should know about PIP from my experience is that it’s very much ability-based as opposed to being solely diagnosis-based. They test the extent to which your disability affects your day-to-day life through both a questionnaire sent in the post and an interview (the interview may well be online now, though, as I applied for PIP before COVID). They asked me a lot about things like how far I could walk, whether I could dress myself without support etc, as well as whether I could cook independently, and whether I could find my own way around an unfamiliar place and such. A lot of the questions were about practical aspects of everyday life.

Admittedly, it’s 2 years since I applied for PIP, but from memory, the questions and means testing process were very much centred around more practical/skills-based things of that vein. As someone with somewhat mild autism compared to some, who is affected by it a bit but not profoundly by any stretch, I was deemed ineligible for PIP.

Based on what you describe, I’m unsure of how much you’d get in a PIP application, but I’ll profess to not being an expert on the subject, and it’s surely worth trying if you’re seeking support.

I’m sorry to hear you’re struggling so much, though; if you ever need to talk about anything, feel free to drop me a PM.

 

[Jonathan]

Morning everyone. I’ve been out of action for a while so just caught up on the thread. I’m proud of everyone for being so open and honest in discussing this subject.
Can I ask those with autism a question? No judgement and if you don’t want to answer don’t feel pressure but.
Do you claim benefits, more specifically PIP or similar? is this awarded purely for autistism or are there other disabilities also considered?
for clarity I am autistic as you all are. I work as most if not all do. I am a social worker dealing with learning disabilities. Most of my service user base receive benefits but they all have quite difficult complicating factors. So most if not all receive PIP.
My reason for asking is within the last year I’ve gotten worse. I am able to mask most of my difficulties during work time, trying to remain professional and it is helped that we are still mainly working at home and at distance. However outside of work hours I cannot leave the house, the world becomes a haze, ears buzz and anxiety sets in. I’m neglecting self including food and cooking due to the scary symptoms or pure indifference. Even five minutes to microwave a bing meal is taking an exceptional effort and realistically I just go without even this.
I’m aware that there’s probably something else going off in addition to autism - depression and/or anxiety probably and talking with my doctor. However I also know what a meltdown feels like. I know that I am probably exhausted from masking eight hours a day and am considering a different job. my reason for considering an application is not financial though, whilst I know I’m already protected under Equalities Act, I am finding my work and other support agencies seem to prioritise or only speak to those who have a recognition in the form of a benefit payment - so it is that kind of protection, support and additional reasoning I am hoping to obtain rather than to £50 or so that PIP is.
anyone else in this somewhat trying situation?

First of all, welcome back.

I applied for PIP several years ago after being on DLA for a number of years. I wasn't successful, scoring a big fat zero in EVERY category, seemingly because I could do things. It completely failed to take into account ANY support I needed from anyone else, which really upset and frustrated me. I didn't appeal it, as I couldn't be bothered with the hassle. Having said that, it's worth applying for it if you think it could be helpful in the long run. I may end up applying for it again at some point in the future, but it's not a huge priority for me.

 

[rob666]

I think a large number of people are only eventually successful in getting PIP payments through the appeal process.
There have been a very considerable number of appeals, many successful, with the support of other voluntary agencies.

 

[Alolan Diglett]

Thank you all for honest and prompt replies. I knew you wouldn’t let me down.
To be honest I perhaps know a little more about DWP benefits than most due to my work. For instance I’ve just helped an appeal that got one of my service users over £6000 in PIP back payment.
To be more honest if I was assessing myself I’d probably score myself a big fat zero also. I know the assessment is made with prolonged and profound difficulties in mind and like many assessor would probably use the phrase “he functions well enough”
That’s why I wondered whether anyone received a benefit on autism alone - as my service user who I helped appeal and I experience with PIP has physical and mental difficulties also.
What functioning well enough doesn’t cater for is like my current predicament. I’ve not eaten in three days. I’ve not shopped in person or online since the first week of January. I’ve not left the house in that time also. I avoid all people who come to my door and try to help or visit. My house is a tip I’ve not cleaned hoovered done the washing in quite a while. IVe not stopped pacing up and down in days, I’ve worn a furrow in the carpet it’s that bad. I’m constantly shaking, lost for word and stutter, cannot organise my thoughts etc (it’s taken me an age to get this post sounding even remotely coherent)
My rational side says I’m depressed and that’s why but I can say with certainty that I may be low but I am not depressed. My brain cannot at the minute process what I need to do. I know I need to do x y and z. I know how to do x y and z. But I cannot process and understand how to get to x to y to z and so am stuck in a loop of nothingness. Barring one or two burst of inspiration this has been my situation for perhaps the last 2 years and looking in my past has probably been a lot longer but I had people around who helped which I do not now.
I’ll have a look at those forms and see what i can come up with.

 

[Skyscraper]

I had an uncomfortable situation at lunchtime today as well. My support and I went to Costa (Coffee) so she could get her lunch. When she was paying and waiting for it to be authorised, a lady behind us got impatient and tried to cut in. She said something to me which (I can't remember) then TAPPED ME ON THE ARM! I think she was asking if I was waiting to be served, so I just said no and went to the end of the counter. I felt so uncomfortable when she did that. My support didn't see it but when I mentioned it to her she wasn't happy and helped me compose myself. Gave me a hug, which helped (I'm fine with people I know well touching me, just not strangers).

How does anyone else feel on here about touching/hugging? I know that some people with Autism can't cope with it at all.

 

[Jonathan]

I'm not usually too bad with touching and hugging, so long as it's expected. If it's unexpected, then I'm a bit more iffy about it. One thing I'm not keen on is people placing a hand on my shoulder with an unnatural amount of weight behind it. It just makes me feel really uncomfortable and gives me the desire to try and shake it off. Problem is, though, that they'd probably try it again, but with more weight behind it. Really frustrating, but there's nothing I can do about it other than making a scene and inevitably making things worse. All because people don't - or won't - understand how what they do affects me, and just assume I'm normal like everyone else. Worst thing is the people who usually do this know that I'm autistic!

 

[Alolan Diglett]

I am fine with touching and hugging, even as you mention strangers doing it. However apparently I struggle to not be awkward when doing it.
I don’t know what I’m doing wrong for instance I have a niece. She is ten. I think the world of her. She will hug and high five or fist bump (encouraged the last two even with family due to COVID but didn’t overly enforce this) but her mum says I look so awkward when doing these. I don’t know why. It feels natural for me and she’s family but everyone says I look awkward. I’ve asked for more clarity what looks odd and such but no one can tell me what it is just that i look awkward! very frustrating.

 

[NuttySquirrel]

I am fine with touching and hugging, even as you mention strangers doing it. However apparently I struggle to not be awkward when doing it.
I don’t know what I’m doing wrong for instance I have a niece. She is ten. I think the world of her. She will hug and high five or fist bump (encouraged the last two even with family due to COVID but didn’t overly enforce this) but her mum says I look so awkward when doing these. I don’t know why. It feels natural for me and she’s family but everyone says I look awkward. I’ve asked for more clarity what looks odd and such but no one can tell me what it is just that i look awkward! very frustrating.

What do your family even mean by saying that you 'look awkward'? That doesn't make any sense to me! We're all different - we all have different mannerisms and ways of being around other people and that's totally fine. Maybe they're just joking around, but I'd say it's time your family start embracing everything that makes you you rather than trying to change you!

 

[Jonathan]

Why force a square peg into a round hole? Surely the better option is to mould the hole around the peg to ensure it fits more easily.

 

[NuttySquirrel]

Why force a square peg into a round hole? Surely the better option is to mould the hole around the peg to ensure it fits more easily.

I wish more people understood this!

 

[Matt N]

This isn’t entirely related to what’s currently being talked about (sorry to go off on a tangent @Alolan Diglett), but I just had a question of my own for some of the fellow autistic members on here.

Kind of building off of the current topic of awkwardness; I worry that I’m a bit too awkward and not providing good enough conversation on FaceTime.

Why I say that so specifically is because my nan FaceTimes me most days, often because she’s bored and knows I’m not usually doing anything important.

The thing that worries me is that past the regular “Hello, how are you?” type exchanges, I often struggle with things to say to her, and I also worry that I’m not attentive or enthusiastic enough in my responses to what she says, which doesn’t seem to make her very happy. Don’t get me wrong, I always try to answer the questions she asks me and respond to the things she says as politely and attentively as I can, but I get the impression she doesn’t think I offer engaging enough conversation, as she says things to me like “god, you’re hard work” and “talking to you is like drawing blood from a stone”. A few days ago when I talked to her, she seemed particularly unhappy, and ended with “Right, I’ll let you go, seeing as you’ve clearly got [fudge] all to say to me” ([fudge] is paraphrasing a swear word that sounds very similar).

Even though I try my best to make polite conversation with her when she calls, she often complains that it’s her doing all the talking, and how she finds me such hard work to talk to, which makes me feel like I’m clearly not doing a good enough job at this whole FaceTime conversation lark.

So I was only going to ask; is it only me who finds FaceTime a tad awkward, and is there anything you’d suggest to help make my conversation more engaging when I talk over FaceTime from your own experiences?

 

[JAperson]

The thing that worries me is that past the regular “Hello, how are you?” type exchanges, I often struggle with things to say to her, and I also worry that I’m not attentive or enthusiastic enough in my responses to what she says, which doesn’t seem to make her very happy. Don’t get me wrong, I always try to answer the questions she asks me and respond to the things she says as politely and attentively as I can, but I get the impression she doesn’t think I offer engaging enough conversation, as she says things to me like “god, you’re hard work” and “talking to you is like drawing blood from a stone”. A few days ago when I talked to her, she seemed particularly unhappy, and ended with “Right, I’ll let you go, seeing as you’ve clearly got [fudge] all to say to me” ([fudge] is paraphrasing a swear word that sounds very similar).

I call my Grandma most days and have this problem to an extend (although I'm not autistic I think I can respond to this). Me and my grandma have quite different views on most things and we don't have much common interest to talk about. I therefore attempt to talk about things like food, holidays and other simple things that we can all talk about. If you nan didn't want to talk to you she wouldn't facetime you, she's clearly interested. If you don't know what to say, which I too sometimes struggle with, then either ask something completely different or say you need the toilet and will have to let her go (that one always works). I imagine your nan is probably the sort to say things like that without really thinking about the true meaning of said phrases. She's probably also finding it hard to talk about something and wants you to elaborate because she has little to say on that matter.

So I was only going to ask; is it only me who finds FaceTime a tad awkward, and is there anything you’d suggest to help make my conversation more engaging when we talk over FaceTime?

I hate video calls, it's awkward, as you can see each other but your not really with them. You are effectively having a phone conversation where you have to look someone in the eye and sit attentively, which is weird. When I'm on the phone I don't sit attentively like I'm in a school lesson I'm probably slouched in my chair or walking around in the kitchen. I gather you are the same or similar in this regard and that's fine and is simply an opinion you hold. If you don't really want to use facetime, tell your nan, in person probably that you hate facetime and that you can't stand it, although you might not want to mention your conversations with her in particular. Alternatively call her before she facetimes you.
I wouldn't worry about it Matt, it's a normal thing, I doubt you and your nan have much common interest and are probably very differently aligned on most things.

 

[Matt N]

I call my Grandma most days and have this problem to an extend (although I'm not autistic I think I can respond to this). Me and my grandma have quite different views on most things and we don't have much common interest to talk about. I therefore attempt to talk about things like food, holidays and other simple things that we can all talk about. If you nan didn't want to talk to you she wouldn't facetime you, she's clearly interested. If you don't know what to say, which I too sometimes struggle with, then either ask something completely different or say you need the toilet and will have to let her go (that one always works). I imagine your nan is probably the sort to say things like that without really thinking about the true meaning of said phrases. She's probably also finding it hard to talk about something and wants you to elaborate because she has little to say on that matter.

She often says that she FaceTimes me because she’s bored, so my inference there is that she wants me to entertain her. My mum tells me that my Nan struggles to be entertained without other people, and knowing my grandad, he isn’t the most talkative, so now Nan’s retired and has a lot of free time on her hands, she gets pretty bored and talks to me as something to do. It must be said that I’m not terribly good at idle smalltalk, so after my Nan’s asked me whether I have any news (to which my answer is often no, as I don’t live the most action-packed lifestyle, but if it’s ever yes, I do tell her) and we’ve talked about a few things, I often struggle with other things to say to her and she gets unhappy. I was wanting to improve that for her, as I want to make her happier when she talks to me, even if I’m not the one instigating the conversations. She’s my grandmother, and even though I’m autistic and not naturally the most chatty, I hate the fact that I’m clearly not pulling my weight when talking to her.

I hate video calls, it's awkward, as you can see each other but your not really with them. You are effectively having a phone conversation where you have to look someone in the eye and sit attentively, which is weird. When I'm on the phone I don't sit attentively like I'm in a school lesson I'm probably slouched in my chair or walking around in the kitchen. I gather you are the same or similar in this regard and that's fine and is simply an opinion you hold. If you don't really want to use facetime, tell your nan, in person probably that you hate facetime and that you can't stand it, although you might not want to mention your conversations with her in particular. Alternatively call her before she facetimes you.
I wouldn't worry about it Matt, it's a normal thing, I doubt you and your nan have much common interest and are probably very differently aligned on most things.

I don’t dislike the medium per se (I find video calls easier for things like online learning or meetings where you have a very specific agenda to discuss, but I’ll admit I do often find video calls a bit awkward), and I also don’t dislike my conversations with my Nan by any stretch, but I was more worried that my sub-par smalltalk skills mean I’m not entertaining her adequately when she calls me. I’ll admit I find it less awkward to talk to her in-person or over a different medium, such as over message or on the phone, but she likes FaceTime; whenever it activates as FaceTime Audio by accident (where you’re effectively having a phone conversation and can’t see the person), she will never let our conversation proceed any further until she can see me. I don’t think she’d want to talk to me in person because we live a 30 minute walk away from her house that involves a rather steep hill, which she says she finds hard to walk up. I also can’t get over there in under 30 minutes when I’m on my own, and even if I did visit her more often (we usually see each other in person at least a couple of times a week), I think she’d still FaceTime anyway, as she gets bored at any time of the day and it’s a very easy way to reach me.

I don’t know if I find the in-person conversations with her easier because there’s mostly at least one another person there and it’s not just me and her doing the heavy lifting, which does help me, but I do find it easier in-person, for some reason.

I’m glad I’m not the only one who finds video calls slightly awkward, though… it is nice to hear that I’m not going mad!

 

[JAperson]

She often says that she FaceTimes me because she’s bored, so my inference there is that she wants me to entertain her.

This is a similar situation to my grandmother, she's retired and so gets bored, she doesn't really have anyone to talk to so I ring her.

so after my Nan’s asked me whether I have any news (to which my answer is often no, as I don’t live the most action-packed lifestyle, but if it’s ever yes, I do tell her) and we’ve talked about a few things, I often struggle with other things to say to her

This exact thing happens to me all the time. I don't live a lifestyle that means I have much information to tell her. I try to tell her things that are going on but I have very little to say. I don't really have an answer here for you Matt, I think it's just something that happens. Sometimes you've got nothing to talk about and that's perfectly normal, your not the only one.

he gets unhappy.

That doesn't sound good, but there's a chance she isn't actually unhappy but more a bit frustrated that you both have nothing to say to each other, I wouldn't think to much into it.

I was wanting to improve that for her, as I want to make her happier when she talks to me, even if I’m not the one instigating the conversations. She’s my grandmother,

Yes that makes sense to me and is very honourable, like I've said already it's a similar situation to me, my grandma has been through a lot these past couple of years and she's told me how useful my phone calls have been to her mental health. I don't want to stop helping her with that and I know she wouldn't do it the other way around.

even though I’m autistic and not naturally the most chatty, I hate the fact that I’m clearly not pulling my weight when talking to her.

Your probably doing far more than you know or release. Just your presence (well virtual presance) probably does a great deal for your nan. You clearly mean a lot to her otherwise she wouldn't facetime you everyday. You shouldn't worry about how chatty you are, in fact why not talk to her about the struggles you have with conversations, give her some insight into it.

I’m glad I’m not the only one who finds video calls slightly awkward, though… it is nice to hear that I’m not going mad!

Your not the only one Matt, it's perfectly normal. Facetime with family and friends is both awkward and annoying, it makes conversations harder.

 

[Jonathan]

I've been having repeated issues with the iPad case I usually get (yes, that implies plural, as I go through them at a stupid rate). The plastic shell that holds the iPad is just really brittle, and seems to break upon contact with anything. It's not as though I treat them that roughly, but I do wonder whether my slight autism-related clumsiness is a factor. I just had a corner snap off when it went alongside a washing basket, for example. Now begins the task of trying to find a more substantial replacement, as I can't be bothered paying £18 every few months to get a fresh one that's not even very good. Problem is there are so many on the market that making a decision is so hard.