I have a DS with ASD who lives with me and has no job or income. I worry about how he will cope in the future when I am no longer around

I have a 25 year old son who was diagnosed with Aspergers at 16. He had a range of difficulties at school which led to me taking him out of school permanently at 14. When he was a child, particularly in the first few years of school, I thought there was something not quite right although at that time, I didn't know what Autism or Aspergers were. At school he struggled badly to fit in and make friends, and also experienced bullying at various times. It took numerous trips to GPs and other health practitioners on the NHS to eventually get a diagnosis for him. DS has various difficulties with social interaction as I mentioned previously. He struggles with the unwritten rules of social interaction such as knowing when it's his turn to speak, or how close to stand to someone when talking to them, and he won't make phone calls to people he doesn't know. He comes across as being socially awkward and clumsy when talking to people. He also has sensory problems particularly around smells, loud noises and bright lights or sunlight. He needs to have the blinds closed in any room he is occupying. He gets agitated by smells he doesn't like, including normal household smells that most people don't seem to take issue with. He is particularly sensitive to the smell of foods that he doesn't like. He is very selective indeed about what foods he will eat. He also strongly adheres to routines. If something happens unexpectedly or there is a last-minute change of plans for example, he struggles to cope whereas most neurotypicals just take it in their stride and deal with it.

As I mentioned, he has no income and has never worked. He is typically awake all night on his computer. He usually sleeps during the day. It is also common for him to go for weeks without leaving the house. He has no friends or acquaintances, and there are no family members whom he has any contact with except for me. It is common for him to go for months at a time without talking to anyone except for me. Other people in the family have stopped asking about him or inviting him to any events because they never see him. He has occasionally raised the idea of trying to find work, but seems to have no idea how to actually enter the world of work. He has no work experience, references or qualifications. He is 25 but I would describe his life skills and experience as being roughly at the level of a 12-year-old boy. On a practical level, it's difficult to manage financially with two adults in a house when only one person actually has any income. I am struggling with the pressure of it all. I take care of all of his needs. I have not been on holiday for 10 years largely because I do not feel comfortable leaving DS alone in the house. If something happened in the house, for example if there was a power cut, or the fridge was broke, or if he became unwell, I don't think he would cope if I left him on his own for a few days. He is not currently receiving any support for his mental health or any of the issues I've mentioned. He is an adult and needs to ask for help himself if he wants it, but he won't. I am now in my 50s. I am not terminally ill or anything but I am definitely slowing down. I am finding it difficult now, but I am particularly worried about how he will cope in the future when I die. Are there any other parents with adult children who are in similar situations? What would you do in my situation?

Parents
  • Have you tried getting PIP (personal independence payments) for him? 

    You need to ensure that if anything happens to you, he won't be evicted from his home - if you own it, write a will with him as the beneficiary so he will inherit the house (make sure life insurance is in place to pay off any remaining mortgage) but if you rent, enquire about him being able to take over the tenancy. 

    You need to have a discussion with your son about his future, and explain that at some point he will need to look after himself. I know you believe he is younger mentally than his actual age, but even a 12 year old should be able to grasp this. I know you probably don't want to cause him more anxiety, but it's better that he is prepared.

    If he is entitled to PIP and is really unable to care for himself, you will need to find out what support will be available to him (I believe your local council should be able to help with that) but if he is not entitled to any benefits or support, he will need to learn money management, how to claim unemployment benefits, and how to prepare meals and keep a house clean.

    There may be some articles on this website that can give you more advice, and it might be worth checking if there is an autism support group in your area.

  • Thank you to the people who have kindly replied to my post. In regard to NAS and other organisations offering advice and support, I think sometimes people can have unrealistic expectations about what such organisations can do. I think the NAS do stellar work with raising awareness and signposting support services, but there are limits to what help they can offer. This also applies to other organisations in other areas of life. For example, if someone is struggling to pay their bills, they will be told to asked for advice from debt advice charities or the CAB. No charity or organisation can force a company to extent their deadline for repaying debts, or to write off money they are owed, for example.

    In my son's case with his autism and associated issues, I've found support from the council or NHS to be close to non-existent after his diagnosis, sadly. There are EHCPs (care plans) for adults with disabilities, but these are only available for adults under 25 in my area. I'm unsure if this applies nationally but I would assume it does.

Reply
  • Thank you to the people who have kindly replied to my post. In regard to NAS and other organisations offering advice and support, I think sometimes people can have unrealistic expectations about what such organisations can do. I think the NAS do stellar work with raising awareness and signposting support services, but there are limits to what help they can offer. This also applies to other organisations in other areas of life. For example, if someone is struggling to pay their bills, they will be told to asked for advice from debt advice charities or the CAB. No charity or organisation can force a company to extent their deadline for repaying debts, or to write off money they are owed, for example.

    In my son's case with his autism and associated issues, I've found support from the council or NHS to be close to non-existent after his diagnosis, sadly. There are EHCPs (care plans) for adults with disabilities, but these are only available for adults under 25 in my area. I'm unsure if this applies nationally but I would assume it does.

Children
No Data