Published on 12, July, 2020
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?
You are a full time carer for him, can Citizen's Advice not give you advice on what financial and social help you both might be entitled to?
Does he go out at night? Are there jobs he could do at night? Something in IT or admin where it doesn't matter when the work is done, so long as it is done. Stacking shelves in the supermarket, security guard for an office block, delivering leaflets round the doors.
In terms of future proofing, PIP application for him, and maybe universal credit. If he doesn't claim some kind of benefit now, he won't have any NI contributions to give him a pension later (assuming we still have one at that point).