Asperger's with other health conditions — Scope | Disability forum

Asperger's with other health conditions

clarek34
clarek34 Member Posts: 9 Listener
edited May 15 in Autism and neurodiversity
My 22 year old daughter is Asperger's but has also been diagnosed with fibromyalgia, ME, Functional Neurological Disorder and possibly Bi polar. She has had most of these health problems for the past 4 or 5 years. Are there any others here suffering similar. How did you cope. Her mental health is shot. She's currently on the crisis list because of feelings of suicide but apparently because she's not gone through with it she won't be fast tracked to mental health team.  
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  • kami24
    kami24 Member Posts: 402 Pioneering
    I have borderline personality disorder and feel very sad especially with covid etc that made things even worse due to isolation etc and people annoy me in general as they think they are better. I hope you get some solutions for your daughter
  • kami24
    kami24 Member Posts: 402 Pioneering
    Samaritans may offer more advice 
  • clarek34
    clarek34 Member Posts: 9 Listener
    Unfortunately she isn't comfortable talking about feelings to strangers. I've tried CBT therapy with a therapist experienced in autism but my daughter did not enjoy the experience. 
  • Ross_Scope
    Ross_Scope Posts: 5,466

    Scope community team

    Hello @clarek34

    Welcome to the community, sorry to read about what your daughter has been going through. 

    Is your daughter receiving support from her GP with her conditions and mental health? Are they aware of how she feels? And has she ever had a local authority needs assessment, to determine any help she may be able to receive through social care?

    I wonder if she might find it beneficial to meet others in similar situation, or with things in common. Does she have any hobbies? A few places you might wish to contact:
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  • clarek34
    clarek34 Member Posts: 9 Listener
    We recently had to request change of GP due to their inaction. New GP has been more proactive and this has lead to the ME and possibly bi polar diagnosis. They are aware that she gets extremely depressed and have tried to fast track but doesn't qualify as deemed safe and not vulnerable living at home. She is not receiving any support as after initial assessment by local authority she is not entitled to anything as she lives at home. Unfortunately Elizabeth doesn't like to talk about her interests to strangers as much as her health.  She won't admit that she has medical conditions that are disabling. It was a battle to get her to claim Universal credit as she doesn't think she deserves it. She wants to work, but has so many barriers, the main one being herself.  I suggest places that help but she won't help herself, yet complains that I'm always doing things for her because it'll never get done. I appreciate the pandemic has hit services hard leaving Elizabeth feeling let down. 
  • Ross_Scope
    Ross_Scope Posts: 5,466

    Scope community team

    I see @clarek34

    I'm glad that the new GP has been more helpful, hopefully that continues. If your daughter persists with feelings of suicide please ensure that she gets back in touch with the GP to seek any further support available, and take note of the resources I provided in my previous post.

    It must be frustrating to see Elizabeth putting up barriers that prevent her from progressing, but I'm sure that eventually she will access help, it can sometimes just take time. If you ever wanted to point her in our direction, she is always welcome to give our helpline a call to discuss things through, and Scope has a free Support to Work service that would assist her in finding employment.
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  • clarek34
    clarek34 Member Posts: 9 Listener
    Thank you for your offers of help, she has already been with two charities that offer help to those with barriers into work but because of her health she's not really at a stage where employment is viable, if it ever is. I really want her to have  independence but how can she without employment of some kind
  • Tori_Scope
    Tori_Scope Posts: 6,715

    Scope community team

    Have you considered suggesting volunteering instead of employment @clarek34? I know it'd be easier said than done, but if you could help her feel empowered in seeking out her own volunteering opportunities, perhaps she'd be more likely to engage? 
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  • clarek34
    clarek34 Member Posts: 9 Listener
    She's had bad experiences volunteering where she's felt like she wasn't really needed or treated differently.  Her health issues now make it difficult for her to be reliable and therefore feels worthless.
  • Tori_Scope
    Tori_Scope Posts: 6,715

    Scope community team

    I'm sorry she's had those bad experiences @clarek34. No volunteer should be treated that way. Could she perhaps look into remote (e.g. online) volunteering opportunities, with an organisation who is more understanding? 
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  • rubin16
    rubin16 Member Posts: 217 Pioneering
    I can kinda relate to your daughter, I have Autism, Schizophrenia, Gilberts Syndrome and very bad crohn's disease for which I have a perminent ileostomy bag. I spent years being scared to go outside or socialise with people let alone have a job and had spouts of suecidal thoughts and self harm for which I also was under the crisis team. I think what your daughter needs is to just concentrate on her strengths, and not what makes different. Like for instance having a hobby or something and turning that into a business to make money is an option.

    For me, I just took alook at myself and hated my life that much that I would do anything to change it, and then realised that only I can, so set myself some goals on how I can improve my life. I got help from a company Remploy who help people with mental health issues or Autism find work, and supports them through the journey like CV writing, Mock Interviews and general support. Today I started my new job for which I havn't worked in years and couldn't manage working before. My point being I wouldn't say your daughter is never going to live independently as things can change and get better. Its just finding what works best for your daughter and her needs.

    Theres lots of help out there and lots of ways to make money to live independently, its just finding your spark and accessing it but I think what would help your daughter more than anything is concentrating on something she enjoys doing. Does she have any hobbies or special interests?

    Anyway hope this helps.
  • clarek34
    clarek34 Member Posts: 9 Listener
    Thanks for your reply. Good luck with your new job.  My daughter used to make things in clay to sell, which she did with fairly limited success. Unfortunately she had a couple of nasty customers which has put her off doing it alongside health issues that make her less dexterous. She is also an excellent guitar player but again because of hands she can't play like she used to even though it's still really good. She had help looking for employment but by then the pandemic arrived and now her mental health has gone down hill she doesn't want help she wants to die. I want to be positive for her sake, but it's difficult when the support services are not there when she needs them.
  • Cher_Inactive
    Cher_Inactive Posts: 4,414

    Scope community team

    Hello @clarek34

    I'm sorry to hear your daughter is still experiencing low mood and suicidal thoughts.  It sounds like you've been really proactive in pushing for help and I imagine it's frustrating to come up against delays.  Being a carer can be tough and I wondered if you were you getting enough support yourself in dealing with this?  If not, I'd really encourage you to speak with your GP so your own health needs don't go overlooked.

    If your daughter's suicidal thoughts begin to escalate, consider phoning 999 and asking for emergency services or visiting your local A&E.  Sometimes A&E departments have a psychiatric liaison team who are able to assess patients there and then, providing appropriate treatment and referring (or expediting referrals) to relevant services.  Here's a link from MIND about what A&E can do in a crisis.  

    Also, nurturing your daughters confidence around her skills could prove really beneficial.  I wonder if she could continue to sell her clay figures, with someone else looking after the customer service or by going through a third party?  Unfortunately, a small minority will always be nasty but it would be a great opportunity for her to increase her self-esteem and independence.

    The idea of looking at remote volunteering opportunities, as suggested by @Tori_Scope, is a good one too.  If you need any help in looking for organisations, please let us know :)

    I'm going to email you shortly to speak more the things mentioned, but in the mean-time take care and I really hope you have progress with the referral asap.  
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  • Cher_Inactive
    Cher_Inactive Posts: 4,414

    Scope community team

    Hi @clarek34 I'm just checking in to see how you and your daughter are keeping.  Remember we're here if you need us, and I hope you're having a good start to the week.  Take care.
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  • clarek34
    clarek34 Member Posts: 9 Listener
    A lot better thanks. My daughter has at last been given an appointment for mental health assessment 
  • Ross_Scope
    Ross_Scope Posts: 5,466

    Scope community team

    clarek34 said:
    A lot better thanks. My daughter has at last been given an appointment for mental health assessment 
    That's good news, is it far off?
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  • clarek34
    clarek34 Member Posts: 9 Listener
    This coming Wednesday
  • Tori_Scope
    Tori_Scope Posts: 6,715

    Scope community team

    I hope it goes well tomorrow @clarek34 :) Let us know how it goes.
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