really need advice - my needs vs family expectation - high-functioning autism

i have small, close & loving family for which i'm very grateful and value above anything. also have long & complex medical history coupled with the personality more suited to a carer than a caree. i have a much loved/loved by older brother who also has some quite complicated health/lifestyle problems, & over many years we have settled into habits that involve me happily supporting him and helping out wherever possible. my health over the last 2-4 years has seriously deterierated & i have spent the last 18 months trying to get him to understand & accept my limitations, & i can see how hard things are for him too, how he tries and worries about me & his struggle to cope generally. although never diagnosed (in his 50's) i believe he is a 'high-functioning autistic', he's extremely intelligent with zero social situation sense & fails to understand the way the rest of the world operates which means his stress levels are regularly sky-high, he has ocd in direct conflict with mine - i need order/he lives in chaos. i have tried using the 'spoons' analogy etc. I AM STUCK!!! I just dont know what to do. he doesn't trust anyone else but i'm unable to cope. please, if you have any suggestions, willing to try anything that doesn't involve upsetting him any more than he is already.

25 Replies

oldestnewest
  • Tulips

    What a lovely name!

    My heart goes out to you, I am sorry I dont have any immediate answers BUT I do completely understand where you are coming from. I am a mother of a high level functioning autistic (asperges) boy and at 15 he has seen more trauma from medical conditions than most having lived through me being his grandfathers carer before my illness (he passed away with cancer) and now we are each others carers with the help of my 75 yr old mum. Family dynamics are hard to deal with. The spoons analogy is a good one BUT I find that its better not to push for "understanding" from asperges or autistic but to go dwn the "acceptance" road. I mean that if you cannt understand each others worlds but are just prepaared to accept them itss a good start. The OCD and autistic tendencies mean that their world is packed full of things that they see which ordinary folk are unable to. They live in permanent fright or flight mode. Given my experience with my son, and also from my career, I would gently try and get the condition recognised formally and get your bro the help he deserves. If he is in his 50's then it explains why he wasnt diagnosed. I know its a tall order BUT his condition will have effected him all his life. As it is undiagnosed I am guessing he doesnt get any help other than family? Although autism isnt a mental health issue, its labelled as such because the funding comes from mental health dept. (its a govt thing!) . Ive found some pretty wacky ways of helping reduce ocd's and asperges tendencies with my son. Some have worked others havnt. For you and your bros sake maybe you could look into 1. propper diagnoses (there are plenty of autistic associations who will signpost you) 2. Help reducing the fright or flight reflex (i can talk to you about what we have discovered if it helps) 3. Finding time out from each other, for bros then this may mean finding friends with common interests (my son uses the web and is into computer stuff)

    My fingers dont work well every day, and ive not been on this site long, but if you would like to please message me. If I can help I will.

    Many hugz

    NN :)

  • Thank you so much - you clearly totally understand. What is scaring me is the way he is watching me and the panic i can see building in his face because he is not fooled for 1 second by the smile planted on my face! He is aware of the the way stress affects me and is really trying to cope more in managing for himself, and when I ask him about things he just says he's tired. This is breaking my heart. He isn't here all the time, he travels around a lot. He is unpredictable in behaviour, but I think I understand his thought processes and feelings better than anyone as we have spent the last 50 years forming a sibling bond which is rare, very rewarding in many ways, and @ times very difficult to maintain From previous experience I know it will be VERY hard (previous attempts having failed miserably) to 1) get him to accept he even has a problem. He believes he is no different to everyone else, even though he clearly does not understand people generally & 2) to then get him to talk to someone.

    I have a strong feeling circumstances are all too soon going to force the issue, but in the meantime any tips you have whether they helped with your son or not, i'm willing and most grateful.

    I hope it goes without saying, you clearly have your own limitations and I really would hate to think you would feel obliged to over-step them. I dont think things are @ risk of imminently imploding! I would just like to prepare the ground ahead of time..

  • Hi

    no worries on the pressure front re me1 my fingers work or they dont lol! Firstly its hard to say it all at once but I think I can see how if you get to 50 without official diagnosis or help, its not surprised you could think theres nothing wrong. Its the same as everything medical really, trying to get someone at least on board who can try and push forward towards diagnosis.My GP didnt know what asperges was and told me to go privately when my son was 11 annd the diagnosis was not until he was 12/13! I did have to force the issue as they only fund around 23 assessments per year for minors and are behind for at least 2 years worth. They firstly refused to place him on the 2 yr assessment wait. However, it is a different situ with adults. I think it would be a good idea to get some info on gifted asperges folk so you can talk about the benefits and not the opinion its a disability or illness. It helped me to chat with my son abou who he is, I was able to refer to his differences as skills instead of curses. He knows he is not joe average, but this kind of chat helps to put a positive slant and gets the acceptance rolling. You need to make sure bro isnt scared off by the autism being dealt with by mental health department. Its at least a start. He will find some stuff difficult like social understanding, but he needs to see that on the same scale he can shine at others, maybe visual observation skills, technical understanding etc. Work on building the positives in order to prepare for attempting to help him through the poo bits. You could always chat to autistic associations as his carer/advocate whether he accepts it or not thats what you are and you can get some adult diagnosis path help that way. He will need to be on board as the health service are ace at saying the patient knows best if it means they have to do nothing.

    so if pointers so far are not possible until he looks at his own strengths and issues differently, in the forst instance I would work on trying the odd discussion about those brilliant folk who have used their ocds and asperges to the better. I bet his analytical (pure) skills are second to none! Start buikding on that understanding that its a gift not a curse, and then build in the "but with that gift you may need a little help with" Its a softly softly fore runner to trying to get him to talk about what he cant do, which is what we know so well is pivotal to what help we can try and get (benefits etc).

    All this is about him..... but dont forget YOU! I need to take time out for myself and do some totally selfish stuff on a regular basis. If I dont hink of me in my world, no one does! Make sure you do some stuff that feels good for you, and the battles of communication wont seem so hard.

    Take care and ask anything you want to, as I said if i can help, I will.

    Have a good evening

    :) NN

  • 2nd time of trying to send my reply, so if i'm repeating myself i apologise. Are you sure you haven't been a regular visiting fly-on-the-wall for the last 1/2 century? I'm going to bed and I believe I'll sleep well tonight. You have given me much (positive) to think about, tomorrow is another day and I have new direction to investigate!! I feel much better, thank you! :)

  • I am laughing now!!! Fingers were bad yesterday so not here, but to answer that Im about half a century OLD lol ;) try and keep smiling

    hugz xxx NN :)

  • Long ago decided humour is often not only the best way, it's the only way!The support i've had on here has really been an absolute life saver, and i cant thank you enough. No need for you to worry if you're having tough time, between you & maladjusted i feel a great weight has been lifted and i know i can manage! Keep the sunshine shining :) :)

  • Hi Tulips

    As Nordic states, it might help if your brother were diagnosed. Although there is not a lot of help out there, it would help him access what is available, and maybe meeting with others who share the condition would help him?

    I live alone with my 23 year old son who has Asperger Syndrome. He wasn't diagnosed until just before his 15th birthday. His father had left by then as he couldn't accept anything could be wrong with his son. My support of him, and search for answers caused too much tension between us.

    As it is just the two of us, my son has become quiet accustomed to my sorting out all his problems, and being there for him. Although very intelligent he has almost zero social skills, and quite simply does not see the world the way I, and most others do. He isn't right, isn't wrong, just different.

    Again as Nordic states you have to settle for compromise, just accept each other for who and what you are - if you can do that it certainly reduces the tension.

    From what I have learned in raising my son, the best way to get him to 'understand' anything is with pure logic, and using analogies that he can relate to.

    He has found it very difficult to adapt to my needs and if we have a day out together goes bounding off down the street on his long legs, he is learning though, and will accept my need to rest occasionally now.

    I have brought home leaflets on Fibromyalgia and left them on the dining table, knowing full well that whilst having his breakfast he would pick them up and flick through. As they confirm what I have been saying - but without the emotion he is finding it easier to accept that things have changed and I need more help than before. I think he was also afraid that if I needed more help, I would also be incapable of giving him the help and support he needs, which caused panic. It has taken 4 years but we now do what we can for each other. I could use more help, but I am not going to get it :( Fortunately as his problems are 'mental' and mine 'physical' we get by most of the time. Don't expect empathy or understanding, just acceptance.

    My son too lives in chaos (always thought autistics needed order?) I need 'neat and tidy' So I accept his room being a mess, and he accepts kitchen must be clean as through explanation of 'why' a dirty kitchen will make us ill it makes some sense to him. He doesn't understand why upstairs must be tidy - in his mind no-one sees it so why does it matter - still working on that one.

    Living with someone with high functioning autism is stressful, which isn't good for us, so you have to learn to adapt as best you can. My doctor advised that I 'lower my standards' day to day and do what needs doing when I have a good day. she said people do not understand what it takes out of you living with someone like this, she also said it can lower your pain threshold, and feels to some extent that years of coping alone with my son and fighting everyone to get help can have contributed to the Fibro.

    This message is becoming lengthy, and it wasn't meant to, but please feel free to PM me if you think I can offer any help or advice.

    Em

  • It never ceases to amaze me how much the people using this site have in common. You speak as someone with daily living with this situation, and thank you for your advice. Your courage in facing up to all this, alone, whilst learning to manage your own problems, is a boost for me. I hate to say, I think you are right & the time will come when a re-balancing of our relationship will come. It is scary for me, and I can see that he is aware things are getting worse which is causing him to panic. He travels around a lot, has friends of his own, but i'm the only one he trusts & can turn to. I also thought people with autism needed order, but I think he is unable to fathom so much of the world around him his head spins & he cant keep up! He's nearly 53, and I think we have a long way to go - any advice gratefully received.

  • Don't beat yourself up over the inevitable Tulips, stress is so bad for you. I do understand where you are coming from, you have cared for your brother for so long,a nd understand him so well, that you don't want to cause him further distress, however you really do need to think of yourself too. You will be no good to him at all if you make yourself ill.

    My advice would be to talk to your brother, he is scared and panicking right now as he can see change coming, and probably thinks you are hiding something which will only cause him to panic more. Don't leave it until it is inevitable, but talk to him now. Explain what is happening, and changes you envisage. Ask him about his worries and see if you can reassure him, whilst at the same time gently pointing out your own needs. He is an adult and an intelligent man at that, take is slowly, keep it matter of fact and try not to get emotional. You cannot protect him from this, neither should you try to. Take it one step at a time, he may react badly at first, so just give him the time to absorb what you are telling him, and deal with it in his own way. Be prepared to answer his questions, but be firm about what you expect from him.

    There are many books available on the condition at the National Autistic Society, Amazon ebay etc, though personally I have learned more from talking (and occasionally fighting) with my son.

    At this stage I would not push your brother towards diagnosis. It might be more than he can handle right now, considering he is going to have changes to cope with. Talk about it by all means if you think it appropriate, but you know him best, so take your cue from him.

    My son took his diagnosis quite badly and blamed me for pushing for it. It took a while for him to realise that nothing had changed. He never would have accepted a carer or respite care, but I fought for CBT for him, which although brief was a huge help.

    I would suggest you contact the NAS helpline and talk to someone who can not only understand, but can professionally advise how to deal with the current situation. They can also put you in touch with a local support group, which you can attend with or without your brother. I initially attended mine alone, but my son came along a couple of times and felt better for realising he wasnt the 'only one', though his lack of social skills, means he didn't make the meetings a regular habit.

    Try not to get yourself stressed over this. There are many people here for you, and if you think I can be of any hep, feel free to contact me anytime

    Em

  • I've only just woken. Your last paragraph has made me cry (relief I think). I've been struggling with this for so long. I have 2 wonderful daughters, 1 grandson + another due September (son-in-law - no comment!) cousin who doubles up as an amazing friend, a friend of 44 years standing & another of 20+. Not a huge number, but if you're looking for quality over quantity this is it!! However, there are drawbacks. I know that if they got wind of how worried I am about him they would be unable to hide it or keep it to themselves which might just bring forward the very thing I'm trying to slow-down!!! I've got to go, you have given me much food 4 thought and yes, thank you, I will be in touch again! :)

  • Bless Em

    and lots of hugz to another gifted kid mom xxx

  • Thanks Nordic. sounds like you are doing an amazing job yourself. It is never easy, but so rewarding when you see progress. My son was almost 15 when he was diagnosed, until then I'd never heard of the condition, and it seemed like the end of the world, yet it answered so many questions. It has taken a lot of support, but he now has a degree.

    I have learned such a lot from my special son, and am far more tolerant than I used to be.I feel that if he at 15 could accept his diagnosis, then I should be able to cope with the Fibro diagnosis. I feel honoured to be his mum.

  • Hi Tulips

    It sound like you have a lot on your plate, I have found that is important to look after your health over anything after all if you are burnt out, crippled with pain then you can't help anyone. sometimes you have to be selfish, i don't mean in a bad way i mean in a self preservation way.

    for example - recently I could feel my mood changing, I was not very good company and felt on the verge of tears all the time. so i went to see my dr and I am getting my bloods/hormones tested again, then I have taken time each day to help lift my mood before I do the things that i have to do, Monday I cleared my chakras, tues a pamper session (hot bath, painted nails, plucked eyebrows and had a pj day) today listening to music and singing along whist i sit in the back yard enjoying the sun. I'm not saying don't do the things you have to do (somethings can wait though) but do have some 'me' time, and do things that make you happy,relaxed etc - what ever that is for you?

    I was going to suggest the 'spoon theory' but you have already tried it.

    I agree with the above answers that you should seek outside help for your brother but i also think you should seek help for yourself.

    after all you are the most important person in your life.

    keep smiling x

  • Thank you for your kindness - I know you're right & i'll do my best!

  • Doesn't your brother need a carer to lighten your load? Talk to his GP about getting a referal to social services. Make it clear to the agency that they can not send strangers but he needs regular carers and when they send a new one make sure you are there the first couple of times to introduce him/her, later on a regular carer can do a double-up to introduce a new carer. I know you might initally think he wouldn't cope - but what is going to happen if you should get worse? Act before you actually DO reach breaking point.

    I have carers who come in each morning - and they are wonderful people who have become firm friends.

    Julie xx

  • Thank you. I know the time will come, I just dont want it to. It's just heartbreaking.

  • This may sound harsh Tulips, but I promise you I don't mean it in that way, but these things need addressing before you actually need them, it's going to be too stressful waiting until that time, you yourself may not be able handle it then. Arrangements need to be made now whilst you ate able to cope with this. Your brother needs more support, it shouldn't all fall on your shoulders. He needs being taken under Social Services wing as you need a break from it to concentrate on yourself and keeping as well as you can.

    It is quite true what Julie says about explaining about a regular carer seeing him, so he gets used to him/her coming regularly. The first step is to talk to your GP, explain the situation and ask for exactly what you need = regular personal care for your brother daily. Arrangements could be made to take your brother by minibus to a local day centre for the disabled, they would take care of him for the day with various activities, he would benefit from social interaction, have his lunch there and then be taken back home afterwards. Social Services would know if there are facilities for this in your area.

    I honestly believe that once this is sorted out, you yourself will feel much better. So much of the stress and strain will have been taken off your shoulders. It really is too much for you to handle. You need help and support yourself.

    Take care Tulips. I hope it all works out for both of you very soon. :)

  • not harsh, common sense! it's often easier to see clearly from the outside looking in. my emotions & exhaustion have been getting in the way, which is why i decided to offload here. i have had very kind messages (isn't it strange how kindness makes you cry?) and two people in particular who are in similar situation have been able to give me some excellent advice and direction to look into. I cannot tell you the relief i'm feeling! I have slept & slept & slept, the dam has burst it's banks and i've wept & wept & wept! I've decided to roll with how i'm feeling over the weekend and indulge myself a little (as advised :)) & then hopefully by monday - "once more into the breech dear friends!" this is do-able rather than impossible!! :)

  • Hi Tulips, just checking that everything is ok with you and wondering if you managed to sort anything out regarding your brother? We noticed you haven't been around for a few days so naturally were concerned about you.

    Your situation is difficult yes, but it is sortable. You just need the right support and advice to know what's best for your brother. I was scrolling back through the messages on this thread and gather he hasn't been diagnosed. If you haven't already, please pop along to have a chat with your GP to see if your brother can be referred and you can take it from there.

    Anything at all that concerns you, please come into the forum, we are always only too happy to lend an ear and to try to help where we can. If we don't understand about something, we will always try to find out about it for you.

    Hoping to hear from you soon, take care. :)

  • Not going to well and too tired to thing clearly. I think he'll be gone again by the weekend and then I'll get some professional help whilst he's away. Please excuse me, i'm just too tired! I will be in touch, thank you for caring. x

  • I'm autistic and so is my mum (although in denial and wouldn't seek a diagnosis).

    Is there any point in trying to get his needs diagnosed and officially recognised?

    There should be an autism strategy in your area. im also 'high' functioning and have found a way to seek help although that is being criticised.

    Overdependency on 1 person can be another autistic symptom. i know i have it with gran and when she dies there wont be anyone as understanding as her left.

    Chronic pain is probably a hidden disability for many autistics, as 1 lecture i attended mentioned '95% of challenging behaviour' is caused by hidden pain.

    Great idea re the leaflets lying around, i have tried that 1 with my mum and other relatives "we dont have time to read about your disabilities" they tell me.

    I'm also HMS in addition to my fibro which was missed for years due to my inability to express hidden pain.

    Carers have rights too, you might get an assessment based on being a carer (with or without your carees permission) so you can get more support. Whether that be physical or financial support eg carers allowance, also you can claim DLA for someone who is without a diagnosis and without their consent under certain circumstances.

    i would ask at a Carers centre about what help you are entitled to.....good luck.

  • Thank you so much for responding! Not going too well at the moment, and I suspect he will be off on his travels again by the weekend. Short term relief for long term problem! I dont know how to handle this and too tired to think clearly, but perhaps this time I will make use of his time away to seek some professional help. I cant seem to break through, whatever happens I know that we are stuck in old behavioural patterns that I cant change on my own. It wont be easy, I feel like a traitor just talking online, but there is no more running away this time! That's as far as I can go today. Thank you :)

  • The Princess Royal Trust for Carers and another organisation called 'crossroads' are both really good places to go for support as a carer.

    I got a lot of benefit from just irregular contact and their monthly magazine when I was Lindsey's full time carer.

  • Forgot to say,

    Check out carers.org/

  • Tulips good to see you here today - I think you've realised (and I know how difficult it is to come to this point) that you need help for your brother. You have absolutely no need to feel a traitor, you come across as loving your brother and wanting the best for him. By coming into the forum here and hearing that we all agree you need help has got to be a good thing and a step in the right direction. A trouble shared is a trouble halved, so they say.

    You've done brilliantly today accepting the situation, give yourself a gentle pat on the back. We are always here for you. Take care. :)

You may also like...