Can't cope with adult autistic son. Need advice/insight

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I have a 26 year old son who lives at home with me. He was diagnosed with Aspergers at 21. I feel his diagnosis isn't sufficient as he seems unusually severe compared to other adults with the condition. I have felt this way for some time, but I feel I can no longer cope with the demands of being his full-time carer. He can not function normally as an adult. He's never had a job and rarely leaves the house. He doesn't like going outside at all. He dislikes doing out during the day because he feels exposed. He won't go out if someone is outside near the house, such as a neighbour, as he worries that they will try to talk to him (even if it's just a "hello"). I take care of almost all of his needs. I buy all of his clothes and cook all of his meals. He has no experience of paying bills or budgeting. He is usually awake all night and sleeps during the day. He sleeps a lot but when he's awake he just sits in his room on his computer all day. He is usually online all day and has no life outside the house. He says things like "people don't like me" and "society has no place for me". He has no friends and has no actual human interaction with anyone except for me. Everything in the house is tailored to how he wants it to be. He basically rules the roost. He has to have the curtains and blinds closed in every room and gets agitated if I open them. I can only have the windows open when he's asleep because he complains the house is too cold when I have them open. He is also very sensitive to noises, smells and bright lights. He's extremely picky about food. He will check the labels on everything obsessively and won't eat something if it has an ingredient he doesn't like. He can not cope with changes in routine. He also washes his hands constantly - probably at least 15 times a day. I can't get anyone to come to the house to do building work because he gets very distressed about people visiting. He is not violent but he can be quite snappy and aggressive.

I love him very much but I just can't cope. I haven't been on a holiday or vacation for over 10 years because I can't leave him at home on his own. He wouldn't be able to cope on his own in an emergency situation. If I went on holiday without him, I wouldn't be able to relax as I would be worrying about him the whole time. He's also talked about suicide before, so I would be concerned about leaving him for a prolonged period in case he tries something. I have minimal contact with family as they have never been helpful or supportive. Their kids have all turned out fine. I'm in my fifties now and I don't want to have to spend the rest of my life living miserably. I have had input from doctors and professionals but it hasn't helped. He won't take medication. As he's an adult, no one can force him to anything and he knows it, so nothing changes. I don't want him to be homeless but I can't have him at home much longer. He would be unable to cope with living on his own.What options do I have? I'm from England in the UK.

Why are you giving in to his demands? It sounds more like he has anxiety disorders along with Asperger's. Possibly social anxiety ,obsessive-compulsive disorder or agoraphobia. Or all three.

He's dependent on you for everything. So why not attach conditions to the things he wants? He gets to have x, y, or z, if he will do chores, or learn to do things. He's ruling the roost because you are allowing him to do so. If he can't do anything for himself, and is refusing to help out or learn to do anything, then he is controlling you, and you are enabling him. Just as those morbidly obese people who are confined to bed have those who enable them by bringing them food.

Stop allowing him to get his own way all the time. Consider having him go to therapy (if possible) because I think he has at the least social anxiety disorder and obsessive-compulsive disorder.

Welcome Minfilia,

I am sorry to hear you feel trapped by your son. My daughter is 15 and I have felt like this with her too, when it was just her twin sister, her and I living together. She however would get violent to get her way. And at first I gave in to prevent her rages, but then I realized she was manipulating me. I had to remind her and still do that I am the parent and she is the kid and I will help her by accomodating some things for her, but she cannot make our lives unpleasant to please her. I have had to reminde her that we all have needs and preferences in life too and it isn't all about what we can do to make her happy. I realized that the more I did for her to help her feel better, the more she demanded and the more she made me frustrated and angry that no matter what I did, she wasn't happy.

If my daughter didn't have school, she would be just like your son, sleeping all day and on the internet all night and she would hardly leave the house either. Like when school is out for the summer.

You are going to have to take the steps to get your life back - maybe not a full vacation, but some new hobbies and interests and outside activities so you can start to feel better. Perhaps some counselling for you could give you some ideas.

I don't like leaving my daughter either, as she is impulsive and lord knows what she will get into when I am gone, but you cannot let your son run your life. You have to take your chances by leaving the house for a few hours, so that you can find some joy in your life. Like my fiance and I will be going to the movies on Saturday night and I am also going out with my other twin daughter for an outing in the afternoon. I try to do fun things with my AS daughter, although there aren't many things she wants to do.

Another thing is just because your son has AS doesn't mean he isn't capable of doing things for himself. My daughter does her own laundry, makes her own school lunches and snacks and usually her own breakfast. She also has weekly chores to do on Saturday and she chooses to do them while we are sleeping because she likes to quietly clean her room and listen to music. From the time my kids could talk, I have made it a give in that I am not their slave and they need to learn how to take care of themselves. Sometimes my daughter complains that she is the only teen in her autism program that makes her lunch or has chores and I tell her then she will be better equipped so she can take care of herself as an adult because that is my job as a parent, to help her become independent.

This is your life too and your son is really lucky to have you trying to make his life easier, but you need to stop being the mother hen and get him slowly doing some of these things for himself. It isn't going to help your relationship for you to feel like a prisoner in your own home.

Also, have you looked into programs for adults with AS so you can get some respite or parents of adults with AS because I am sure you not the only one who is suffering through this and they could really could be supportive to you and give you ideas too.

Autism is considered a spectrum disorder--exactly how much someone is impaired can vary widely.
Did you get a copy of the assessment? This may be useful for figuring out exactly how impaired he actually is.

There are a whole bunch of issues going on here. 21 is a bad time to be diagnosed in the USA because most services stop at 18. OK, I got the diagnosis, now what? And at 21 he may have friends that are getting jobs and becoming independent adults. May not be all that different in the UK--unless nobody is able to get jobs there???

I'm not sure what county you're in, but asfaik the right to assessment is countrywide - though you will need to look at your own county council's website (or plumb it into google).

You may have already done this, but you can refer him for an adult social care assessment and you should also request a carers assessment. They may offer you help with your son within your house but if you want to live separately from him you are likely to need to be very firm about it.

Tell them that you can no longer care for him and are no longer willing - that is, you don't want support to live with him, and that they need to provide alternative supportive housing.

This is the information for my county council, Oxford: https://www.oxfordshire.gov.uk/cms/content/requesting-assessment

This is information about the types of supported housing available, it is from Mind which focuses on mental health difficulties, of course: http://www.mind.org.uk/information-support/guides-to-support-and-services/housing/supported-accommodation/#.Vw-pRfmDGko

And another from the National Autistic Society: http://www.autism.org.uk/supportoptions

I would strongly suggest contacting the National Autistic Society to get more advise about your options before you try to argue with the county council. They will have more information than I do.

This is a type of story I have read many times on the parents forum here.
Your son has built a comfortable shell for himself to avoid facing the world as an adult.
I agree with Yigeren on how you should approach this issue.
The reason that your son has so few skills in anything and is so dependent is probably because you did not raise him to learn enough skills and prepare him for independence from an early age.
However, he is only 26, so it is not too late to learn, but it is harder, because he has made himself a tiny comfort zone and the older he gets and more time spends inside, the less willing he may be leave it for even small forays into the real world.

I think the later you are diagnosed the hard it is to deal with because you haven't been able t learn to control you behaviours like this who have been diagnosed for a while.

I was 15 when diagnosed and was much more severe than other aspies my age as I had not recieved the help they had. As people who hate change it is a stuggle when your whole world changes after being diagnosed.

I know how hard it is on parents, I saw my mum really struggle when I was having a tough time. My mother slowly bit by bit reintroduced me to the outside world after I became a shut in. She was a mixture of patient but forceful and I am very glad for it. Maybe he needs a bit of push and self believe.

If all else fails there are people that can help including accommodation specifically for those with autism and similar disabilities that would give both of you some freedom. You shouldn't have to feel trapped and I'm sure he wouldn't want that. If you contact the national autistic society they can help. While at uni they sent some one to help care for me so my mum didn't have too. They may be able to relieve you for a little or as I mentioned offer the accomodation

Also have you explained to him you feelings bluntly or do you thing that could make things worse?

I forgot to add

Link to autistic society:
http://www.autism.org.uk/

They can give you all kind of advice and help.

And care homes for autistic adults:
http://www.carehome.co.uk/