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 Alone, withdrawn, spending 99% of his time in his room, uncommunicative, avoidant (of everything, no courses, jobs, classes, volunteering, relationships...), mucky and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?
That sounds like an extremely difficult situation. Your son may be very afraid of being forced into things he doesn't want to do. The thought of jobs, classes, relationships, etc will likely seem completely terrifying and overwhelming. His experiences in the past may have been negative, which has led him to become more and more withdrawn from the world.
I know I am quite reclusive and I see that as my choice as an adult. However I do live independently and at some point your son is going to have to do that as well.
Does your son have any special or intense interests that you know of? Does he have access to a computer or games console in his room? Do you know if he communicates with the outside world in any way?
I'm wondering if he is part of some online virtual community. That could seem like his world and he doesn't feel the need to inhabit your world, except for basic needs such as food.
Maybe trying to understand what interests him in life could open up some better communication with him. Just talk about his interests, in writing if that is easier for him than verbally.
At this stage he needs to be confident that you are not trying to get him to get a job, volunteer, make friends or any of the things he fears. It sounds as if he is a long way from achieving any of those currently. Merely mentioning any of them could be so overwhelming for him that he just shuts down and withdraws further from the world.
Absolutely. The transition into the adult world can be particularly scary and I didn't cope with it very well myself (fluctuating between avoidance, self medicating with alcohol and constantly seeking out new self help approaches to anxiety because, of course, I was also terrified of going to the doctor's so could only consult books about it).
And yes, the pressure to get a job, volunteer, study or even just get out there into the world to any degree can make things worse. Likewise dropping into the alternative nightmare of negotiating the benefits system, with the need to focus on everything that's wrong and also to engage with the process to some degree.
And I also agree that shifting the focus onto interests could be very productive, if the person is willing to have that discussion (either 1:1 or via email or phone, depending on what they find easier).There is an Aucademy facebook group for parents and caregivers I find useful too.
For now we're:-
- maintaining a cosy, supportive environment here (our safe "hermitage")
- reducing demands as much as possible
- keeping things low arousal (no excessive noise, attention paid to decor and layout etc)
- keeping very peson-centred. Remaining available to listen but making no demands for interactions, then any conversation which is inititiated is very much led my him (i.e. we don't use that as our opportunity to mention all the "issues" that we see are building up).
- meeting the need for a really good internet connection and a range of foods we know will be enjoyed. I'm not sure about independence. We're all inter-dependent to an extent, although some will need much more support in life than others. So all I'm doing is planning our finances very carefully (estate planning) and revisiting our wills every 5 years. I'm afraid I've found that if we focus on independence, it alters our mindset so that we slip further towards "authoritarian parent" mode, think more about the jobs market or training and run the risk of feeding all the fears. It's a balance, though. We've never rushed to assist with problems that arise which we believe he can resolve himself (and grow in the process), but any push towards independence is very high risk. All very difficult. :(