Published on 12, July, 2020
My son is 25 and has Asperger's. He lives in his room all day except when he takes our dog for a walk. He also works in a small office two days a week. (We transport him there and back). He is very intelligent, but cannot/will not look after himself more than basics like heating up food, occasionally showering, etc.He is extremely anxious and cannot cope with the public. He has no friends.I am very concerned about what will happen to him when we die. There is no other family capable of helping him. What provision can we make? Who should we talk to about this please?
Don't put him in a home. Try and slowly guide him into learning the skills he will need when you''re gone. This will require patience from you.Plenty of people just live alone when their parents die. It sounds like you have high aspirations for him and are expecting him to live the life of a Neurotypical.I kind of need the context of your age tbh. Unless you're about to imminently die it sounds like you are worrying a bit too much.Your son is actually doing very well to just be able to hold down a job.
Hello NAS95118,
Thank you for sharing this with the community. I am sorry to hear that you are concerned about the support in place for your son. To find out about the support available for autistic adults, parents and carers, how to request an assessment or find out about funding for social care please visit:
https://www.autism.org.uk/advice-and-guidance/topics/social-care
Many thanks,
ChloeMod
suggest he extend his hours to cover more days, so that he can afford bills and so on; thats a start. i think considering its aspergers and thats more high functioning, he can make it easy and you need more faith in his ability to function. he needs to think on how limited his time is there, hes in good position if he has a part time job as that is functional and he is normalised to work which is a really hard step for most of us. if hes already there i have faith that he can do it too. just needs to be aware that his time at yours is limited, and that he needs to think on that and work and plan out contingency himself. my parents always pointed to me that theyd not last long and that they was wanting to sell their home in like 3 years and move and not take me with them, that gave me timeline deadline threat to leave.... they never did sell and leave after that time and likely never will do, but it did get me thinking of my future more and making plans. that is good enough to get the ball rolling.
Please reach out to NAS to find what sorts of resources are available. there may be help, some group home situation. Now is the time to make arrangements.
NAS95118 said:He is very intelligent, but cannot/will not look after himself more than basics
Maybe turn the situation into a project for him and give him ownership of thinking through the possible options himself with you to guide him. By giving him this agency in it he may get more mastery over his avoidance techniques and want to think about how he will deal with things.
Maybe treat it initially like a game plan - what to do if you get beamed up to a spaceship and he had to continue on his own. The fantast element may make it more palatable.
Start with the little things - where does his food come from - how does he get it, how does he pay, how about medicines, cleaning supplies and toiletries etc
Next the bills - create a document that shows all the bills that need to get paid, their frequency and ammounts.He will probably need to get some help in organising this but if you give all the details of company, account No, support contact there, frequency then he can work on this when he needs to.
Next the contacts - who is your lawyer, doctor, dentist, vet, therapist etc - get all the names, addresses and contact numbers/emails in a document for him along with any relevant notes.
Next the family - contacts and suggestions on who would be wiling to help in a tight spot. Addresses too if you have them.
Next a schedule of how to run the house - a date planner with when things need doing. Bill paying schedule, renewal dates for insurances, when any maintenance needs doing (clearing gutters, cutting grass etc) etc.
Next a plan for forseeable emergencies - how to get the dog to the vet in an emergency, what if you get a burst pipe, what to do if the power goes off, what if the frying pan catches fire - roleplay these until you are sure he knows the steps and get him to write them down.
Lastly where important documents are kept. Your will is a very important one, deeds for the house, life insurance, your bank details, car logbook, his passport etc and of course a doc to tell him what to do in the event of your death (executor contact, step by step guide etc).
There also needs to be a concerted plan to teach him real world skills such as cooking, cleaning, washing/ironing clothes etc - start a schedule to teach him all these and give him responsibility for doing them on a routine basis to practice them. I would make his allowance dependant on these as a motivator.
Once the day to day basics are mastered then teach him how to do the less frequent stuff like household maintenance, renewing the contents insurance, booking his annual dentists checkup, sending christmas cards etc.
By making him feel more a part of these things you can make him feel he is helping you, growing his independence and having more agency over his own future so he may grow out of living in his room.
This would be my approach - you will most likely need to be a bit unpopular to get him out of his room to do this which is why I suggested making his allowance dependant on it - once his routine changes then he will get more used to it and hopefully less avoidant.
I hope some of it is of use.