Can someone help me understand?

Thank you for your posts. I apreciate it.

Sorry for being so down in my earlier post. Clearly, it's been a difficult time for me of late and that's taken it's toll, but I'm not sure this is about a control issue for me or not wanting to let go. I think it's about my inability to find the right enablers to make life easier. My overwhelmed state has made me realise I need help now, at this point in time, but I have managed before. The problem is, their are so many barriers to every option you seek.

My premise with the boys has always been that they need to aquire and learn as many independance and social skills as they can, so that the dependancy on others is kept to a minimum, I believe this is the right path, but I'm also aware that they will always need support with their independant living.

Currently, many of those with the same level of need as my boys are being let down by the system and suffering deeply because if it. I'm anxcious for them not to become victims of societies failures.

On occassion you realise the enormity of everything and that their limitations are considerably greater than yours and you realise the support necessary just doesn't exist beyond the home/family and that sadens me.

YES, have no experence with self-employment. ATW don't understand Autism or recognise the level of need. The list goes on!

That void leaves you trying to balance everything and you become weary. 

Like most carers, my history of having to care for others has been very much about the circumstances in life I've been left with, not a desire or career choice. My mum became ill and in the absence of support I had to look after my younger brother. My mum then died and as the only female in the family, I looked after my physically disabled Grandmother, whilst simultainiously looking after my boys, It's just how life has panned out for me.

My Grandmother cared for me in my youth and her own mother, so perhaps that's where I got the understanding that this is what you do if you are faced with someone in need. You don't abandon them or stick them in a home somewhere, you enable them to continue to live independently if that's their wish or to care for their well-being if that's their need.

From what I've read in the past and come to understand more recently, many carers are deeply underappreciated and even viewed with suspicion in some cases. That needs to change and is a damming indictment of how those who sacrifice their lives for others through circimstance, are treated by todays society.

When carers are stretched to breaking point because of societies inability to support a disabled persons basic rights, the cracks begin to show.

I'm no Florence Nightingale, trust me, but It sadens me the way those who care for, or try to enable others on the Spectrum, are viewed and that if you try to enable, it's often interpreted as a need for control.

It is a disability, but those who suffer with it are human-beings with desires, wants and dreams, just like anyone else. Stiking the correct balance in support is where the difficulty lies.

I know my boys wouldn't cope with unsupported work and the fact that i'm getting older, may spell the end of their ability to access work. I guess I don't want my absence in theri lives in the future, to take away what little independance they've come to experience or the skills they have to contribute.

Increasingly, I coming to relise how much we take on and how misunderstood we are and about not letting them down,

Hi Coogy

I've been 'mulling over' your post for a few days now - not really knowing if I can help or not!

You sound as though you are at a 'cross-road' in your life- it comes to us all I think, when we have been carers for so long. I refused help for a long time because I felt we could cope and didn't want others interfering (this was pre-full diagnosis for my daughter).I trusted certain people  and allowed them in ,but felt bereft when they inevitably moved on.

Of course EVERYBODY , in our 'civilized society', deserves to operate at their full potential and it is despicable that this is not happening- it makes me sad and angry ! 

I am not far behind you in age and I recently had to admit that I was experiencing 'Carer's Burn-out" - it crept up on me! For the sake of my health and those whom I care for, I had to seek help - but it is on my terms - I like to be in-control! Joining a Carer's Group ,financed by the local authority, I have found a place where I can go and meet others in a similar situation who just need a bit of TLC and a cup of tea/ biscuit - just basics, but they make me feel I am valued. I have met others who are carers and I've realised we are all quite strong in character (we have had to be!). Swopping stories, tips and just listening to each other has been very powerful. My only fear is that I will become too dependent. There is also the danger that it becomes a place to moan and groan and not actually change anything - that I am aware. 

I recently attended a 'Caring and Coping' course - just a morning - but it gave me time to reflect about my role and seek other ways of coping. Our trainer didn't have all the answers ,which was rather depressing, but she did give some positive pointers. 

Now that the election is over with, we need to keep the pressure up on our MP's - we need to educate and keep chipping away. This takes time (of which we have precious little) and confidence - if we all try then they have to start listening! 

Try not to doubt yourself Coogy - difficult I know! X

My response seem to be incorperated into the quote hope is ok and understandable.

Coogybear said:

Post diagnosis, I had a real revelation about my life and about why I struggled so much in so many different ways. I found it both liberating and cathartic to a certain extent.

As a result of a number of more recent events, I find myself questioning why I’m so keen to prove I can manage independently, when there are obvious indicators that I struggle.

What should I do with this Knowledge of diagnosis?

Hopefully won't seem to symplistic but, seek help with the things that are hard and you feel you need to, though you sound like you've done well in so many ares and should be proud. 

Am I a success as an independent Aspie Adult or a failure?  I’m pretty sure I don’t get things wrong all the time, but does make me a Success?

Mostly i would say yes, but they maybe be some difficulties you may need help with but you sound like most of the time you've done well.

Should I be asking others for help with my life or should I carry on as I always have?

How well do you feel you're managing? do you feel you need help and would benefit from it, anydifficulties it may be hardto accept if you need it but if you need help its there, if you're then carry on.

I value my independence, but as the realization dawns that there are some major issues to my independent living, I have to question. How do other independent Aspies live?

Not one i can answer fully, no doubt alot of qwerks and differences that vary among people, but manage. I'm sure other members on here can answer better.

Do they have enablers in their life?

I'm not 100% what that is but i assume its people that help? I would guess that alot get help from Social services, local access team and other possable charities.

Are they reliant on others for assistance in the realms they find difficult?

I would imagine alot are, me soon too. I 'd never of imadgened such a thing  But to fit in such a NT world, may be just the thing.

Or do they relinquish all responsibility to others?

I don't think most ASD's do, i'm on the brink of getting my money taken care of but i've still worked and am capable of alot 'most of it i do better than NT's'. If you've coped all along then you must be doing well, you local access team will just offer advice if thats all thats all you need.

Am I expecting too much of myself and my children to consider holding down a job or wanting to contribute to society? Surely it’s important to have a purpose?

I suppose time will tell with this, best to start part time with work for your kids.You may well be supprised, i think aslong as everyone finds something that they can relate to, cirtain difficulties can be over come.

As the roller coaster of life rolls on, I feel I have more questions than answers!

Feeling really lost just now and somewhat like a rabbit in the headlights.

Any questions please respone, to a great extent i feel the same, rather confused ethics seem to guide me more. The election has been a great destraction to me..

I’ve spent most of my life caring for others, yet I can barely care for myself…………

Coogybear said:

Post diagnosis, I had a real revelation about my life and about why I struggled so much in so many different ways. I found it both liberating and cathartic to a certain extent.

As a result of a number of more recent events, I find myself questioning why I’m so keen to prove I can manage independently, when there are obvious indicators that I struggle.

What should I do with this Knowledge of diagnosis?

Am I a success as an independent Aspie Adult or a failure?  I’m pretty sure I don’t get things wrong all the time, but does make me a Success?

Should I be asking others for help with my life or should I carry on as I always have?

I value my independence, but as the realization dawns that there are some major issues to my independent living, I have to question. How do other independent Aspies live?

Do they have enablers in their life?

Are they reliant on others for assistance in the realms they find difficult?

Or do they relinquish all responsibility to others?

Am I expecting too much of myself and my children to consider holding down a job or wanting to contribute to society? Surely it’s important to have a purpose?

As the roller coaster of life rolls on, I feel I have more questions than answers!

Feeling really lost just now and somewhat like a rabbit in the headlights.

I’ve spent most of my life caring for others, yet I can barely care for myself…………

Hi, Coogybear. I really feel for you, and I want to try to give you some advice. If you have been managing to live independently, work, and care for children, I would strongly suggest that you continue to do so.

I'm a female aspie and I also have Borderline Personality Disorder and severe depression and anxiety. (I too was diagnosed with ASD as an adult, having previously been considered "just" personality disordered and ?schizophrenic. I started receiving psychiatric outpatient treatment and medication when I was just 11 years old. I've also had spells as an in-patient.

As a child / teenager, I cried if I was separated from my parents for even one night. However, I had two serious love affairs in my late teens / start of my twenties, and I was happily able to stay / holiday with these men without missing my parents. In effect, they had fillled the gap with the love I had for them. I was also able to cope fine without my parents when I was in psychiatric hospital, since I was being "cared for". I also managed to hold down a job, since I worked in the same office as my Mum.

After a very long stay in psychiatric hospital when I was 21 (my two great loves being in the past)  - it occurred to me that I couldn't live with my parents "for ever". I therefore resolved to marry the first man who would have me. I married in haste at 22, but (because I didn't really love this man) - I missed my parents badly, even though they lived nearby. My mental and physical health deteriorated and I was off work a lot. I spent my time curled up in the foetal position on the carpet. My husband couldn't cope, and packed me off to stay with my parents whenever this happened. I would "get better" after a few weeks, return home to my husband, and then the whole cycle would start again.

I divorced and went back to live with my parents when I was 27. However, I'd become convinced tht I "had to have a man in my life". I therefore remarried quickly, again to a man whom I did not love. Exactly the same thing happened as in my first marriage, although I did manage to have a child. My Dad died, but somehow I coped. We all(husband and son, together with my Mum) - moved to a different area altogether. My husband soon left and returned to our previous home city, London.

I had given up my old job on the move, of course, and wasn't able to hold down any subsequent job I tried. I carried on the same old pattern and found another husband (whom I didn't love) ASAP. I am still with him, but am desperately unhappy. He too is aspie, and my son has autism, ADD and Separation Anxiety Disorder. I still cry for my Mum, and she has to come round to "look after me" at times, even though she is 93.

I currently have a psychiatrist, as I'm on antidepressants and anti-psychotics to try to stabilise my mood. I also have a Support Worker from the organisation Autism Initiatives (www.autisminitiatives.org/). She visits me twice a week and provides emotional and practical support. Plus, I attend our local Autism Initiatives weekly social group and "coffee club" for aspie adults. I don't have any friends at all.

I am comletely unable to stay on my own, even for one night. Most of the time I barely cope even with having my husband and son with me. I feel unsafe, panicky, isolated and uncared for. Since there are no residential care facilities for "independent" autistic adults with a family, my way of coping when things get impossible has been to pay and go into a private residential ("old-people's") home for a few weeks, where I am "looked after".

I don't intend to repeat the pattern and marry a 4th time). I'm desperate to love passionately again, and to be loved, but I've never had the strength to hold out for that special someone, and I still don't. So, if I ever find myself alone, my plan is to go into residential care permanently. Professionals tell me that this is "a waste of my life", and that I'm "stronger than I think", but it doesn't feel that way; I'm always teetering on the edge of desperation. My only coping strategy is a negative one: alcohol abuse, and I feel that nothing will ever change, or at least not for the better.

I'm sorry if this has been a load of unhelpful wibble; I don't know that much about your situation, but I've gone into detail in case some of it resonates with you.

I hope you can see why I started by saying that if you've been managing to cope - however difficult it may be - that you continue to do so and don't give in. Once you start to give in, the whole thing unravels, and it's a downward spiral.

Now, having said that, by no means am I suggesting that you just "carry on struggling as you have been and are now". You obviously need help to ensure that you can continue to cope. I don't know if you're being helped by any professionals at the moment, such as psychiatrists or psychologists? Whether you are or not, please try to find about specific services for ASD adults in your area. I've given a link to Autism Initiatives in this message, although they don't provide services all over the UK. The NAS should also be able to point you in the right direction and / or your local council's Social Services department will have information about the relevant Autism service provider(s) where you live.

Please be kind to yourself. You say you've spent your life caring for others, but you need some care too, to enable you to continue doing this and to keep on with your independent life. It's never wrong to admit that you need some help.