worried about future for my 2 adult autistic sons

[Countrymum1]

Hi there,

I live with my two sons 29 and 26. Both have autism and are quite able.

29 year old works part time and receives ESA. He can travel on public transport independently and loves being out and about. 26 year old was recently diagnosed and also has lots of anxiety. He would love to get admin type job but this is big challenge. He also can travel independently like his brother and likes cinema, gym, star wars. He has no friends just goes out on his own or with myself.

I have supported both sons completely. We live in Brent in NW London. Both were assessed by social services but were not considered to have any needs. As I do meet all their support needs I feel very alone and do not know any other parents/carers in my situation. I have no family in UK who can help or advise me. I am 60 now and suffer from anxiety and stress. I worry about what will happen to my sons when die. They have no other siblings. We own our own home and my sons do not want to consider living elsewhere. When I try to talk to them about the future they both get upset and walk out. They both say they can look after themselves but this is not true. I pay all the bills, take them shopping, prompt them to clean up and wash their clothes, support them preparing meals, take them to doctor/hospital appointments. This is having a huge impact on my health and I need to start making real plans for the future.

The boys dad sees them regularly but does not really worry about their future like I do. He has left all the decision making and caring to me.

I feel a real wreck at the moment. Sorry for going on with this long winded post but I really would like some idea on how to move forward.

Can I leave our home to both of my boys when I pass on? Can they get some support to help them live in their own home. Adult Social Services in out area told me that it can only help people in really desparate situations and we do not fit their criteria.

I have booked an online webinar in April with Mencap on Wills and Trusts and hope this will help. I am very grateful for any replies that may help.

Thank you so much.

[Cadburybutton]

Dear Country mum

This sounds just like me I have lots of ideas to share please email me on [e-mail]

My sons are 39 32 I bought a house that I live in with one of them now this house is in a trust for them so they would never be homeless be same if I sold this house and if I bought another I would do the same them having monies and benefits would mean they have assets overv16k so in effect would mean they would need to pay for any care costs etc

So as I say lots to share identical motor journey I’m in East Midlands email me if this is allowed

[Countrymum1 in reply to Cadburybutton]

Hi Cadburybutton,

Thank you for your kind reply. It is very reassuring to hear how you have put your house in a trust and made your the future more secure for your sons. Well done to you getting this done and I wish you and your sons the very best for the future.

I will see what I can learn from the Mencap Webinar that I have booked in April. I want to put our home in trust. I won't have lots of savings though for maintenance, care. etc. so this is something I need to work out.

I do not know the rules about contact others by email on here. If it is allowed can someone please confirm this please. Thank you again.

[DrSarahmac]

hi there. I have a 39yr old daughter with health and learning disabilities. I’m 59 too. I’m lucky to have a supportive husband who is stepfather to her but like you I’ve always worried about her future. Last year I attended the trusts seminar and since then we’ve set up a trust to look after any property and other assets for my daughter. This will protect her from losing any benefits. So she’d have a home, her benefits to live on and some assets for house maintenance, essentials and the odd treat. Getting that set up has given me some degree of peace. I’d definitely get that in place if I were you.

Maybe you need to tackle this from the angle of your health if your sons are superficially coping. Like you my daughter appears to cope well because if all the support I give her but it’s impacted my health. Following a health crisis we now have have 9 hours of support provided direct to her to take the pressure off me and keep me healthy. If you are getting ill because if the relentless pressure and worry at some point you will have a health crisis. . Maybe speak to ‘Care for the carers’ if you have them in your area. They will be able to signpost you to help that may be available or advise how to access social services support in your circumstances.

Best wishes. I know how you feel xx

[Countrymum1 in reply to DrSarahmac]

Hi DrSarahmac,

Thank you for replying to my post, it is very helpful for me to find out about how other parents, like ourselves, cope and plan for the future of our children.

I am a member of our local Carers Centre and I will check in with them again for advice too.

Wishing you all the best.

[LearningLot]

The social care assessment should list all the persons needs, even if those needs are currently being met. If this hasn't happened then I would ask for the assessment to be redone.

[Countrymum1 in reply to LearningLot]

Hi Learninglot,

I will check out another care assessment for my sons. Thank you.

[TBDavid]

Thank you for raising this matter.I am a year younger, with an only non-verbal autistic son.

I'm planning to leave my home to my son in trust, with 3 trustees, a trusted support worker who has worked with him in the past, a distant family member, plus a local charity.

The charity will be able to work with the LA.

The former support worker to explain his behaviour etc and likes.

A family member as someone for him to visit or visit him.

[Countrymum1]

Hi there TBDavid,

I also want to leave our home in trust for my sons. I need to research more, on how find trustees, as I do not have family living in UK and my sons do not have any other people to support them other that myself.

You have very good plans for your sons and I wish you the best of luck or the future.

Thank you.

[Skippymcdoo29]

Hi, it’s so reassuring to hear from people in a similar position! My 31 year old son was diagnosed with autism at 4. He’s gone through mainstream school but struggled in getting qualifications. No one ever assessed him for learning disabilities. There seems to be no support. He worked as delivery driver for 5 years but this made him very anxious and depressed. He isn’t working now. He’s very overweight and is on antidepressants. I’ve applied for an adhd assessment through nhs. In some ways he’s able in that he can order and pay for his mobile phone etc but he has no friends, has no motivation to make positive changes and I worry about his future as I’m 66 and his dad is 80. I’m now booked onto will trust webinar in may. He’d like to live independently so he could learn to look after himself while we’re still alive but could never afford it. Can we access supported living? There seems no support for him or me. I went to local carers group but they only seem to have groups for carers of older people. So lovely to meet similar people to me here!