Cassandro in knots: sleep, procrastination, life purpose etc

The most I can hope for is to go down fighting. Unfortunately, I don't have the energy.

I'd like to update this thread two years on. There were a lot of thoughtful, helpful responses on it and some suggestions I hadn't tried. It seems I had a mentor back then (now paid for through Access to Work, so thanks for that).

Now I have an additional diagnosis of ADHD, which is another thing to blame lack of 'productivity' or satisfaction on, but doesn't in itself define the problem well enough to work on. Am currently taking atomoxetine, and like someone said in the comments about melatonin, it's possibly having the reverse effect from what's intended in both immediate effects and after some weeks. I'm even more tired and even more distractible. My ability to discipline myself doesn't seem to be there. On the other hand maybe this is just a reverse placebo effect.

And distractibility I think may well be the key reason for executive function problems with 'initiation'. I am a procrastinator from lack of confidence, but the distractibility makes it so much worse, and so much harder to do the things on my to-do list. A change grabs my attention and I forget what I'd decided was important. I don't suppose anyone knows a decent free online test for distractibility?  I may have mentioned the target detection task that is a part of a lengthy suite at https://gbit.cognitron.co.uk/

An on the subject of sleep, I don't think it was the light. One of my guidelines did turn out to be wrong: 'if you wake after 6 am, accept you're not going to go back to sleep and get up'. In fact sleep between 6-8am seems to be quite valuable, as some 9-5 workers may know.

OK, time for a nap, and then to get back to what I should be doing. Thanks as always for listening.

Like with others on here, I get where you are coming from as I have had problems with sleep in the past as well and still ocassionally do. Maybe try wearing a blindfold or something to block out the sun? 

I also get where you are coming from with the “real-world relationship part” because before I went to uni I had no friends and only talked to people online on communities like this. What helped me become more confident with talking to people in the real world was I started by building up a good friendship with one person who I felt understood me and got on with me, and as the built my confidence I then gradually got more friends as I found it easier to make them due to that giving me more confidence. Maybe if you try to build a friendship with somebody who you consider understanding to build your confidence and then you can take it from there? 

Sorry to butt in here, but

Cassandro said:

My main question is how did you get your autism support worker? What qualifications or experience do they have? What is most helpful? Do they help motivate you?  I want to be able to do things for myself, but have a current block about this and really could do with help setting goals I can believe in.

I got my Austism Support Worker through Access to Work - a cost to the government of about £75 per session and I have two sessions a month (a total of three and a half hours a month).  And most of the time she is very helpful.  She works for an autism charity and although not autistic herself she tries to understand the problems I face and does understand that the essence of me, my autism, and my actions as a result thereof cannot be changed in any meaningful sense.

Which brings me tot the real point of dealing with the problems.  There are two sets of people who need to accept what an autistic person is - the person themselves and everyone else.  And believe me I have spent my whole life trying to change myself.  It doesn't work.  What happens is that it causes the sleepless nights, the depression, the anxiety, the trying to think things through, the 'acting' worthy of an academy award, the million and one thoughts going on at the same time.

And then others try to change my 'behaviour' as it is not construed as 'normal'.  I do not hurt anyone deliberately, and would far rather be left on my own in most circumstances. Usually what upsets people is unconventional things - unconventional thinking, unconventional social behaviour, apparent rudeness (which I don't see at all) and failure to follow directions, unusual eating habits and other habits which are not socially acceptable (once again nothing that would get me arrested for!)

I try to accept 'me' although I am probably my own worse critic.  And I have come to the conclusion that in most circumstances what I do and how I do them is no one elses business but mine.  I am old enough to make my own mistakes, although I do have to be careful as I am extremely vulnerable at times to other people taking advantage of me.  And if others accept me for what I am there is no problem.

The biggest problem as always is employment.  In a lot of ways, the worst waste of time ever invented ...  but then that once again is just the way I think!

Thanks again to people who replied. I can come back to this page in future. Sorry if the topic's wandering a bit, but then I don't really know what the problem or topic is.

Someone said I was definitely in a rut. Possibly reassuring. I'd thought I might have been in a rut inside another rut.

I suspect I'm slipping backwards, particularly in terms of activity. My work attendance has continued to be bad, and I'm not even tracking my absences. It may be that I need to move on from my job, although the demotivation is more pervasive than just work. I'm probably depressed, but it's showing up as a behavioural problem instead of a mood problem, possibly because of my own attitudes since the diagnosis. I can't see any point in going on. People have mentioned the 'satisfaction' of ticking something off a to-do list. I don't seem to experience that. I don't seem to get any positive feelings at all. That's the way my years-long depressions manifest. The hedonic treadmill would at least keep me trim, but I can't even see the carrot on the stick. (Or maybe I realise it is on a stick and trying to do stuff like sort out my paperwork is futile on a cosmic scale; thus I'd need to concentrate more on the short term.)

On executive dysfunction, which is a big thing for some autistic people and may be for me, here are a couple of resources I was sent:

• https://autismawarenesscentre.com/executive-function-what-is-it-and-how-do-we-support-it-in-those-with-autism-part-i/
• https://collectionsofamadaspie.wordpress.com/2015/05/14/neps-negotiatied-education-plans-what-are-they/ (see table)

The first link deliberately conceals anything it thinks are solutions, but links to Cynthia Kim's useful pages on executive function (EF). In trying to focus on what the problem is, it lists some categories:

• Planning - I can do, but need to know the goal.
• Problem solving - well maybe a problem at the stage of identifying the problem, but no one else seems to be able to identify it
  exactly either. Once I know what a problem is, I can usually fix it.
• Working memory - my 'prospective memory' (remembering to do things at the right time) isn't great. I expect my working memory is fine.
• Reasoning - pretty good here, I'd say.
• Attention 'directing that focus can be challenging'. Yes, that's an aspie thing. It may need someone else to prompt.
• Inhibition - to some extent, that's an ADHD problem.
• Initiation - yes, that's more like what I'm experiencing. 'Inertia' as previously mentioned.  'unless the activity is initiated by someone else it doesn’t happen. It has nothing to do with desire, or “want” – it is about lacking the function of “just doing it”' Could be.
• Flexibility OK. Sometimes I want to do things in the order of the plan, but am quite capable of modifying and adapting it a bit in response to circumstances.
• Monitoring - rather than the example given, it's monitoring against a plan that's a problem. Just not motivated to even think about the plan.

In practice, executive function is a slippery concept. Sometimes it looks like responsibility. Sometimes it looks like self-discipline. Sometimes it looks like being a competent adult.

Well, what if I'm not a responsible, disciplined adult? What if it really is a motivation problem after all? Can anyone help with that?

So, yes, I've not been pushing myself recently, not to do things that are probably pointless. From what I'd written before... I was going to stop doing stuff just for the sake of something to do, and see if real motivation emerged; and also let myself ruminate a bit for a change.

I'd started a poll on 'has thinking of yourself as autistic changed your social behaviour?' and it seemed most people are letting themselves react in a natural way as a result of a diagnosis. Well, I'm thinking of myself as being alexithymic and having 'an EF problem', so am letting myself go in that respect. Even if it's bad, it may bring the problem more into focus. I'd like someone to explain my problem to me as if it were a medical thing and tell me how to cope with it.

Just don't know where the time is going, although spending time on the web isn't helping. If there are no goals, there are no milestones. I have told my mentor I wanted more support. In which case I suppose it's right that I should approach the GP. I just have no hope that there is anything useful there, no adult autism services I'm pretty sure. A diagnosis of autism seems to me to just be an admission that psychiatry can't help. Maybe that's depressive thinking in itself. Autism-tailored CBT and/or melatonin just might help push the things that are outside my direct control?

Thank you, BlueRay.

My main question is how did you get your autism support worker? What qualifications or experience do they have? What is most helpful? Do they help motivate you?  I want to be able to do things for myself, but have a current block about this and really could do with help setting goals I can believe in.

Yes, I have a few rules, but they're more like guidelines, sometimes rules of thumb to help get to good outcomes and help myself. Things like 'don't compare yourself to other people' and 'take every opportunity'. If I had gut feelings, or were aware of them, I might not need the rules. Probably I don't really like everybody, although I think I am easy to get on with. I'm sure there must have been times when there was something that drew me to a particular friend or they wouldn't be my friend, but often I can't get a grip on that feeling.

I wish rest were the answer. I've had a bit of being awake 4-7am, waking when it's dark and then being able to catch up on sleep a bit when it's actually light (with aid of a sleeping mask). Melatonin was an interesting suggestion from whoever suggested it, and I should enquire. I actually am going to bed a bit earlier as my motivation has dropped, but still have somewhat disturbed sleep and feel really sleepy and tired in the mornings. It's probably depression directly or indirectly at the root of the lack of energy.

You are between a rock and a hard place! 

I hope you get some motivation soon. 

I didn't mean company for the walks, it was just in case you didn't like being outdoors alone/had anxieties about it.  Missed the bit about you cycling so far.

OK. No anxiety about outside, so long as it's not too crowded.

Overthinking - the forums is one less thing to overthink, that's all I was meaning there. Overthinking is perpetual. 

If you have to overthink, I'd say it's probably better to overthink in company. That can keep you a bit grounded. Of course it's possible there is a problem to which there is no solution, or the solution is known but not implemented, so analysing it doesn't help.

You are rejecting everything with every reason not to. You truly are stuck in a rut.

Thanks for confirming that.

I have had decades trying to sort myself out, so have tried a lot of things. This is probably why the professionals can't say anything helpful either, even if they tried. It's only in the last few months that I've started thinking of it as maybe an adult, internalised 'Pathological Demand Avoidance'. But if I accept that, does it mean I avoid pain in the short term, but get into even worse habits as regards self-motivation?

Success is subjective!

Define 'Success' - it is different by each person.  There are expectations and desires in life and ambitions.

It's so subjective. People live by their own experiences and exposures to the world and societal expectations and their own nurtured opinions and uninformed opinions on life and people

That seems to be common sense. But what if you've the inability to define it for yourself? You may not accept social conventions, which would be an arbitrary choice of something that is itself arbitrary, but the being unclear what you do want is part of demotivation. It's a connative and emotional problem rather than a cognitive one. I hope that makes sense – there is much variation within 'autism', and I wouldn't be so worried about mine if it, seeing but not choosing, weren't so linked with painful depression.

Cassandro said:

I have heard an autistic speaker, who I related to in other respects, tell of how headaches are with him every minute of the day. It could just be a core symptom for me too, I suppose, something I have to accept.

I hope not. 

Yes, I suppose that's one way of telling. Kidneys become less efficient with age, so I was perhaps thinking pale pee is in some sense not good, but you're right. I've changed my behaviour as a result of a kidney stone, in terms of at least aiming at 3 litres, with no noticeable effect on the headaches, so I don't think dehydration can be a big factor.

I occasionally try to record such things, and the most notable thing has been the occasional relief apparently after an (inadvertent) good night's sleep. Feeling on the verge of tears also produces a headache, and it could be a 'somatisation' response to depression, along with chest pains (and no, that's not a physical heart problem, I know they're emotional in origin). I'd associate them at their most intense with staying up late on the computer, or even when out at a film or event and hard to stay awake.

I have heard an autistic speaker, who I related to in other respects, tell of how headaches are with him every minute of the day. It could just be a core symptom for me too, I suppose, something I have to accept.

(+) I remember remarking on them to a trusted adult when I was 10. Whether it goes back much further than that I don't know, so it could be acquired. To be clear, this is a tension headache, nothing like a migraine.

Dehydration is a common cause of headaches and it's an easy one to rule out by drinking more and eliminating it from your suspected causes. Not a great source of conversation, but your urine is an indicator of dehydration just google dehydration charts - pale is good.

I didn't mean company for the walks, it was just in case you didn't like being outdoors alone/had anxieties about it.  Missed the bit about you cycling so far.

Overthinking - the forums is one less thing to overthink, that's all I was meaning there. Overthinking is perpetual. 

You are rejecting everything with every reason not to. You truly are stuck in a rut. 

Success is subjective!

Define 'Success' - it is different by each person.  There are expectations and desires in life and ambitions.

Success - 2.4 children, house, car, job and holidays - no! that is societal expectations. 

Success - a 1st class degree.....means nothing if you are stacking shelves/working on refuse carts. 

Successful?

a high stress job that will end up with alcoholism/drug dependency, heart attack/stroke....

A happy family, paying the bills and having just enough but only afford a holiday every other year.

Being comfortable with yourself, who and what you are and your own achievements in life for you. 

Having co-ordinating clothes on for once today.

A proactive day.....

It's so subjective. People live by their own experiences and exposures to the world and societal expectations and their own nurtured opinions and uninformed opinions on life and people.  

I usually have a pint glass of water near me, refilling it when empty (like now), and drink for other medical reasons. I think it's 2-3 litres of water per day is recommended. I may be ignoring thirst, so might try to count up to see if I meet that.

Eye strain and uncorrected vision may be another cause. I don't yet really need reading glasses, but a trip to the optician may also help (if I can motivate myself).

Thanks for the considered reply. But...

Maybe you need a break from forums, maybe they are causing you to overthink things. 

Oh, I overthink things anyway. I was doing that well before the WWW. Catharting a bit may help, although I'm slightly inhibited from doing that except with one or two friends. In fact, I'm beginning to think that my general tactic of distraction/action, although it avoids ruminative depression, has this motivational problem as a kind of side-effect.

All those hours spent in bed when I was young, wondering what was wrong with me. At first professionals said it was my upbringing and to take some pills. Now they say, yes there is something wrong, although we don't really understand it. Maybe it is time to review the situation.

I think spending time on the forums is more a symptom, of wanting to do something 'easy' - although even here I have contributions I'd planned to make, and haven't. You can't do everything, yes, and they aren't priorities, but I do things that are even lower priority...

It sounds like you are in a Catch 22 situation and chasing your own tail in some ways and you are probably right that you need new challenges to motivate you.

I do try to throw myself into things I'd imagine I'd be interested in, but they just pile up as unmet commitments, to myself or others. That's part of the distraction (just distracting to self-manage means the motivation isn't something that comes naturally). There are challenges that would use my strengths and values, but I can't start them. Maybe I should challenge some of my weaknesses....

I may need people to motivate me. It's not entirely a problem with me but a relative lack of social connection. However, I worry that even had I had a partner or children I wouldn't have reacted sufficiently to them.

Are you able to go for a long evening walk alone or with someone?

No, because it's 9am. 

fresh air and exercise to see if that will help you to sleep through?  or some mind numbing task that requires full focus on that task alone that will stop your mind working overtime on other things so it will rest your brain? 

As I think I've mentioned, I get plenty of exercise, cycling on average about 10 miles a day, running two or three times a week. I'm not saying company and exercise aren't beneficial. They're kind of necessary. But it doesn't seem to help much with the way I act when I'm home on my own.

Procrastination block - just do it anyway, you could find that the block falls away as you get stuck into it,

True. Once you start procrastinating about something, of course it becomes a habit. I've let this slip, and nothing terrible has happened. I don't want to have or to be or to go, but would like to do; possibly some of that is a result of a family protestant work ethic.

I am totally demotivated just at the moment. The engine has been sputtering and dying for a while, but the last few days it seems I just cannot work. I put myself in the position where I might, (went into work on Saturday to try again because I failed on Friday), tell myself I've got a list of tasks to work through, and it seems I just cannot.  It has been suggested by a friend I go to the GP for depression (you could say the depression is more a result of demotivation than a cause). I really doubt any 'service' can help, but it makes sense strategically to try to concentrate on raising enough motivation to do something that might raise motivation.

I have some abstract questions about this: if you don't accomplish something because you have problems with knowing what you want to do, or with motivation, to what extent is that a disability? How much can other people support motivation? Don't you have to know what you want or like before you can identify a barrier to getting it? Do you have to assume some set of  social expectations, like degree or full-time job? ElephantInTheRoom asked 'Who is writing the success criteria?'... well, my view of the world may be one thing preventing me writing my own... and insofar as I do, I can't achieve those.

Maybe you need a break from forums, maybe they are causing you to overthink things. 

It sounds like you are in a Catch 22 situation and chasing your own tail in some ways and you are probably right that you need new challenges to motivate you.

Are you able to go for a long evening walk alone or with someone? fresh air and exercise to see if that will help you to sleep through?  or some mind numbing task that requires full focus on that task alone that will stop your mind working overtime on other things so it will rest your brain?  

Procrastination block - just do it anyway, you could find that the block falls away as you get stuck into it,

Headaches - dehydration? that can be a cause of headaches.

Good. Thank you for the apology. Note that many copies will have been deleted by moderators already, and you will not be able to delete those posts that have already been replied to.

I think the main causes of annoyance and offence has been the high volume, >20 posts; the fact they were inappropriate to the conversations; and that it prevented us finding current conversations, and latest genuine comments within those conversations. I wouldn't personally have minded if one single thread had been started about the research, since otherwise it is from a reputable university. There is also though the issue that is more a matter for NAS:

8. Requests for research study subjects and surveys need to be directed
to research@nas.org.uk for data protection and research ethics reasons.
Further information can be found on our research pages. Please be
advised that any requests for research subjects or surveys posted on the
Community will be deleted without warning.

I am very sorry. I am going to delete this.

I'll tell you what I think about objects. I like some and I don't like others. 

(I did not see this here until after I had said a similar thing upon Martian Tom's Thread!  So we are calling this stuff "Research Spam", okay, I got it. But I might sign off now, it is getting late. Thanks Cassandro.)

NAS38247 said:

PERSONIFICATION RESEARCH PROJECT

 

Hi,

 

I am currently conducting my dissertation research project. I am investigating how autistic people think about objects.

Nooo. It's research spam!

Carolina, don't do this, it's rude. Check with NAS and then start your own thread.