DS1(20) probably has ASD + anxiety problems. Long, sorry

[neuroticmumof3]

I know this is for teens and DS is now 20 but I didn't know where else to post and am desperate for some advice. I'm at the end of my tether and just don't know what to do. DS1 almost certainly has ASD although he's never been dx. As a newborn he would scream all the time, only stopping if he was in perpetual motion (ie in car, being rocked constantly). As he grew older he couldn't abide certain noises (pencils being used, air brakes on buses) or touch certain textures. Whenever I raised my concerns with medical staff they would always cite my MH problems as the cause and never really looked beyond that. It became apparent from quite an early age that he had difficulties in joining in with other children. As he grew older he would always tell me that he had no friends, yet teachers would tell me he was popular.

Fast forward to last year and he went off to Uni, about 400 miles away. Things seemed to be going well. He made friends and academically was doing extremely well. Early this June DS phoned exP (his father) to ask for help and it slowly transpired that he had fallen out with his friends and as a result of this hadn't left his room since early January. He had been living on delivered pizzas. He hadn't washed or changed his clothes in this time.

ExP took him back to his and he stayed there for about a month before coming to mine. He spends all of his time in his room playing online games. He still won't wash/change his clothes and eats very little. He says he can't go out or speak to other people. He says he will never be able to have a job or a normal life. I have a vision of him becoming a complete recluse and never leaving the house again which terrifies me.

I just don't know how to help him. I don't see how I can get him to see a psychiatrist (which imo is what is needed) because he truly won't leave the house under any circumstances. I'm worried financially because I live on a low income and can't support him financially. Again, I don't see how he can make a benefit claim when he can't leave the house to attend the required interviews and/or medicals.

I just don't know what to do or where to start. I have MH problems myself (bi polar) and am really struggling.

I really feel for you. My own DS1 (19) was diagnosed with ASD in the last month. I've always known he was, but didn't pursue it when he was younger as we coped with his quirks, but since his late teens and my marriage break up he has become almost unbearable to live with.

I was lucky to get him through his GCSEs, but since moving to sixth form he has become more and more depressed (coincided with the marriage breakdown). He got through the first year ok, but this past year he barely attended and become more and more isolated. He in this time has also developed OCD - hand washing and refusing to touch anything. He locks himself in his room all day, really only coming out to wash and eat. He has become nocturnal, which is driving me crazy (I can't sleep because all he seems to do is crash and bang around in his room and open and shut doors all night).

I am dreading September when I have to try and get him back to 6th form to complete his A levels. He like your son sees himself in a hopeless situation with no way out.

All I can suggest is that you go speak to his GP on his behalf. Let the GP know that your son is struggling with MH issues and hopefully he can point you in the right direction. You could also contact MIND and see if they can help in any way.

Hopefully we are on the road to some sort of normality after 18 months of going back and forth to the GP, referrals to mental health services and getting this diagnosis of ASD. We are in the system now and I hope that it will get better for him.

It is soul destroying for us as mothers to watch our children struggle. My heart goes out to you.

I think it is a very familiar pattern for people with high functioning asd/ asperger's to cope with demands up to a certain threshold but then for everything to fall apart when the demands suddenly increase like when starting secondary school (our son's experience) or university. His sudden behaviour change certainly sounds like he may be depressed. While it would be better if he was willing to make the approach to his GP himself, he may be feeling too low to do so. GP should be willing to listen to your concerns and make a home visit, if necessary, or refer him to mental health services. Can only echo what mum of 4 says about how hard it is to see our children suffer. Hope you can access some appropriate help for him.

Hello there,

I am 19, and have Asperger's. I hope I can help ease your anxiety a little . First off, sudden changes in our lives (such as a marriage breakdown, for example, if I may use yours as an example), are not taken well. It's because we've gotten used to life as it is, and have our little routines that we must follow. His hand washing sounds as though he is worried about germs and falling ill, and by thoroughly washing his hands he can soothe and assure himself that his hands are properly clean. I know, because I went through this with hand sanitiser, and have only just recently learned to cope without it, and just use ordinary soap instead. It also sounds like a coping mechanism, i.e. if I wash my hands for this long, then I know things will be fine

In regards to the depression, I wonder if there are a multitude of issues (unspoken) ones, that have piled up in his mind, making him feel as though he'll never "get on top" (i.e. sort those issues out, whatever they may be), and thus he sees no way out. I know, I have been there, it is a horrible place.

All the symptoms you talk about point towards Asperger's, however, I'm not going to be so presumptuous as to say your son has Asperger's, I'm not a psychiatrist, and it isn't my place to say. Also, Asperger's presents itself differently in each person with it.

Why not ask the GP and psychiatrist to make a house call, due to the nature of the situation? I think the reason why he doesn't want to leave the home is because it is "safe", i.e. predictable, he knows what will happen at certain times of the day with people and their routines, etc.

Living with Asperger's (and around it) is a daily struggle, but there is light at the end of the tunnel, but you will get there .

I hope I haven't inadvertently stepped on your toes OP. If I have, I apologise.

Thank you for your replies. It's comforting to hear from others who have had similar experiences. In order to register him with my GP I need him to find his birth certificate or passport. I asked him about these earlier, told him I want to register him with GP here and get referral to MH services. His attitude is that there is no point, he will always be like this, his life is over and he wants to die, he has no feelings for other people at present (with the exception of his 4yr old half sister, my DD). My heart is breaking for him but I have to stay sane to look after him and his siblings. His younger brother (17) was finally dx with ASD two years ago. There is no doubt in my mind that DS1 has ASD.