Published on 12, July, 2020
My adult son continues to live what seems, from the outside, to be a life devoid of most of the preoccupations and activities of his peer group. Alone, withdrawn, spending 99% of his time in his room, uncommunicative, avoidant (of everything, no courses, jobs, classes, volunteering, relationships...), mucky and unwilling to engage either with services or ourselves as parents.
It seems akin to a hikikomori state, with self neglect thrown in. But all I can find about this kind of withdrawal is descriptions, no advice on finding a way through.
In the past services have been involved, including crisis and early intervention teams. None of their therapies or meds helped - in fact they only made him withdraw still further - and they eventually just discharged him on the basis that he's not mentally ill but rather has a condition, that condition being Asperger's.
As the years go by, I losing hope. My superficial reaction is, "Where has my son gone?" However, I know he's still there. We just can't reach him. This has been going on since he was 17 and he's now 24. I don't feel as though i've known him as an adult. And he avoids most conversations which are limited to brief exchanges about food.
What on earth can parents do? This is breaking us. Does it just go on for ever?
People change as they get older I find and it sounds like he's been a lot what with crisis and early intervention stepping in. From my own personal experiences I find that services like those actually make things a lot worse and make you avoid people and the outside world more. That's how it was for me, took years for me to finally go out again.
It sounds like staying in his room may be his way of not getting hurt again. Our rooms are usually places of safety where we can be ourselves so it may be that. When I had my breakdown after my dad died I hid in my room all the time for a few years, unable to leave and rarely spoke to my mum at all I was worried I'd say something wrong and didn't want to upset her. I know your situation is different but your son might be thinking the same, he doesn't want to upset you or doesn't know what to say.
I'm sorry I can't really help here. I'm not a mum, I was for three weeks but sadly it wasn't meant to be.
I truly do hope things improve for you and your family.
Yes, I agree. Crisis teams and early intervention just seemed to have a one-size-fits-all approach and that certainly wasn't adapted to be autism-friendly. Not that they even thought about the possibility of us being autistic. That knowledge came later. I think that having these teams coming round every week for ages, trying one med after another and upping the dose of each, took its toll on our son and also our family and, generally speaking, I think the approach can drive a person further into their shell. They may be well intentioned and the stance is very much one of helping and supporting, but sometimes the effect is the opposite! And the individual. especially if they're quite sensitive, can be on to their "recovery" agenda and get the message that it really isn't safe to tell them much because it requires them playing a game which they know won't help them. It may work for others but it's not something we'll do again. And yes, staying in his room and reducing interactions keeps things as safe as possible. Likewise reducing interactions to a minimum. And staying within the predictable and entertaining world of gaming too - a vivid alternative world in which the rules are more explicit and results more consistent.
It IS actually helpful to hear from others with similar experiences as it gives us more of a feel for what's going on. And without others' validating such experiences we might not have the courage of our convictions in continuing along this path of least intervention. I'm sorry about the very brief experience of parenthood. Life throws us some very difficult situations sometimes. We grow and change, yes, but of course the scars remain.
It's unfortunate that the crisis teams were unable to help but I am not surprised as their approach didn't help me and I've heard that from others with autism as well. They aren't very autism friendly and focus more on mental health and don't really take autism into account. I can understand how this could have made your son want to hide away into the safety of his room, his little world where nothing can touch or hurt him. Are you coping ok? I imagine it must be hard for you being his mum. Just remember you're doing a great job and if he decides to talk to you about anything then you'll be there for him.
I imagine as well that going through all that and having different meds upsetting him that will have an effect that takes time to recover from. He will recover of course but generally people with autism take time to do this and they do it in their own way. But I do agree that these services often do make people go further into their shells and once in the shell it's hard to come out again. But don't worry he will. He's been through so much, you all have, and now he just needs to process it. At some point he'll feel comfortable to do different things until then I guess it's just a bit of a waiting game.
I can see why he's doing that. His room is his safe space. Video games are another amazing world where he can go and escape. I used to escape in books. The main thing is at least he finds happiness and comfort in this and you know he's ok :)
I like hearing and getting others experiences it can be such a big help and support. I hope I've been able to help you just a little with this.
That's ok. Just a part of life and its many experiences. Maybe I'll get another chance one day. Life is a very long journey, brings many scars with it but it's a mostly enjoyable adventure I think.