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Worried about future for adult Asperger son

NAS71320

Hello, 

I'm new here, I'd like to share my worry if that's ok. 

I'm 58 and caring for my 30 year old son at home, who has Asperger's and OCD. Son is capable in a lot of ways, can do shopping, cooking, washing. He's studying online, but doesn't have a social life, even before lockdown.

He depends on me for practical help around the house, and also for emotional support and companionship.

I have arthritis, and though reasonably fit now, I'm worried about how my son will manage if I become unable to care for him. We have no other family, and I fear for the future. 

Last year I had a Carer's Assessment, which identified that future planning should be supported by a local council disability team. However, I am still waiting for a response despite enquiring. I understand that these are difficult times. But this fear is getting me down, as much as I try to stay positive. 

If anyone has any thoughts to share, they'd be much appreciated, thanks!

  • in reply to NAS71320

    best of luck 1320. i'd encourage you to check out this site periodically for support. as a 65 yo diagnosed very late in life, it's a long uh... hard road... i think you and your son can take it one step at a time. try not to look too far down the road, but at the same time it's good you're already concerned about "far down the road." 

    i come to this site even though i'm not even in the uk. (i'm in the usa).

  • You need to contact your local authority and request a Needs Assessment not a Carers Assessment.The carers assessment identified future planning but expected you to arrange and engage with organisations as your sons carer. With a needs assessment they will identify and assess your sons needs and provide a support or social worker who will support your on a one to one basis arranging opportunities such as employment, education and independent living skills and housing.  

  • in reply to raspberrypie

    Thank you John and raspberrypie for your kind and helpful thoughts! It is easy to get overwhelmed with worry, and you have both given me some ideas to keep going with - hugely appreciated! I don't feel so alone now BlushThumbsup

  • welcome to the forums. best of luck in getting the local support you are seeking. does your son see a therapist at all? or are there any groups he's in? i no, as someone with a lot of social issues, how difficult that can be. i have been in various groups myself --- many are (lol) kind of asperger-filled groups. that is, a lot of pretty quiet, pretty inward people are in them. there's fishing, ham radio, maker things, gamer things (i'm not into those), chess, various outdoor groups... 

    it would be good if your son could try some groups, be in therapy. online groups are sort of a start... does he help you much in the house? therapy may help him figure out how to be more comfortable in groups. it'll take time --- but as long as it is available and affordable, i encourage you to seek out professional. and they should understand what asd is, otherwise it might be pretty counter productive, or simply useless....

    and these forums are a good source of help. best of luck! 

  • Hi, Welcome to the community.

    Although I don't have a solution for you I very much sympathize with your situation. It's difficult to stay positive at times but you have made a start by looking at your situation and having a carers assessment which is great.

    When making enquiries to the disability team try to get them to commit to when they will either have an answer for you or when they will get back to you. It's easy for them to say that they will be in touch but this won't help put your mind at ease. If they can't commit to a timeframe to getting in touch with you then either call or write/email them back to let them know you'd like some kind of timeframe and who is it that will be getting back in touch with you. If you keep doing this then they may try to push things faster for you but you are right in that it is difficult times just now so that may not help.

    There is a possibility that your situation may have been overlooked too so getting in touch with them won't do any harm.

    Sorry, I can't be of more help but I hope you make progress in the near future.

    Best wishes, John.