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 Alone, withdrawn, spending 99% of his time in his room, uncommunicative, avoidant (of everything, no courses, jobs, classes, volunteering, relationships...), mucky and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?
Jenny Butterfly - I just listened to this interview, after watching the Temple Grandin movie, and something her mother said in the interview made me think of you and your son. She said that when Temple entered high school, she experienced of course, a major change, and it took her a couple of years to go through it. She said it was the headmaster at the school who recognized this need and he encouraged Temple and her mother, to simply allow Temple to process and come to terms with this change, before she got engaged in school work.
I thought you might find it interesting - it made me think that, that is maybe what your son and many of us have done, during our periods of isolation or whatever.
https://youtu.be/ULc1c206JM4
Thanks BlueRay. I like the concept of neuroplasticity, of us being shaped by our experiences, open-endedly, with no fixed schedule because we're all so individual. This gives me hope, plus also highlights the need for flexibility.
I still feel our position is rather more entrenched though. We can allow for recuperation time, healing and almost a sanctuary here at home. But now that it's been years I'm really worried that, as and when change does take place, there will be an enormous amount of ground to cover and our son might well feel that a lot of years of his life have basically gone missing. He's 24 and hasn't engaged with anything outside the home since he was 17 (apart from some rather sorry experiences with local mental health services). So it's no longer just "a couple of years", even though we sought help (to no avail due to non engagement) and continue to do what we can to keep things low stress, maintain a cosy home and to build trust and convey love.
I really feel as though we've been bounced into an alternate universe here, in which we've really lost our bearings. We might have felt differently if he (and we!) had been diagnosed at a younger age like Temple and had time to bring in appropriate support and be aware of the challenges. Instead, due to lack of knowledge of autism being in our family, things were left to run to the point of breakdown and total retreat.
Even then our son only has an informal diagnosis of Asperger's given by the consultant discharging him from early intervention at the age of around 22. He refused to see any more professionals so hasn't had a full assessment so I decided to have my own assessment, feeling strongly that this was a familial thing (if I hadn't been autistic myself I might have spotted certain differences instead of thinking, well, he takes after me any development was typical!). Now my older son has been diagnosed too (age 26) and I'm thinking that there's a lot of ground to make up.
Overall, due to lack of self knowledge and awareness of the nature of our own problems, we've let our sons down very badly. On that basis I think we have some lost time to make up for and we're now starting from the position of total withdrawal in one son and some very serious mental health issues in the other.
I'm aghast really. It seems so extreme and almost beyond belief. Against that background, Temple's mother seems to have an unreal, slightly saccharine quality, whereas we live in what often feels like a total nightmare. :(
If Temple’s mother seems slightly saccharine, she deserves it, after years of what must have felt like a total nightmare to her, when Temple was younger. She may have had a diagnosis but there was far less awareness and understanding of autism back then ~ she was lucky to not have been put in an institution.
I’ve been studying brain plasticity for years. There is no doubt whatsoever amongst scientists etc that we shape our brains and our lives, through our thoughts and beliefs and to find out what our inner most thoughts and beliefs are, we need only look around at our lives, the people in it and the situations etc ~ they are all reflecting our inner beliefs back to us ~ they can’t not, that’s simply how the universe works. If we don’t like what we see on the outside, we need only change our inside, our inner thoughts and deeply held beliefs, and our outsides change to mirror or reflect our new beliefs and thoughts.
You haven’t let your sons down. I’m sure you have always done the best you can with the knowledge, awareness and experiences etc that you’ve had. To say you’ve let your son’s down is typical self obsessed autistic thinking, or in AA (Alcoholics Anonymous) they would say it’s the height of arrogance.
I thank god I wasn’t diagnosed at a younger age. If I had been diagnosed as a kid, I would no doubt have ended up at some special school, or worse, locked away in some institution. And had I been diagnosed as a young person, I would have rejected it as I wouldn’t have been able to accept it at that age. My diagnosis came at a perfect time for me.
Are you getting any specialist autism support for yourself?
If we want to know if we are on the right vibration to attract to us that very thing, we need only look at our lives. Does it reflect that back to us? If not, then what is it reflecting?
We don't have to think of an illness or disease to get one, but if our thoughts and feelings are at dis-ease then they will have their physical outcome in one way or another. We cannot escape the law of cause and effect. Well we can, but that's a different story.
But you've got a good approach and I agree, i doubt that MAIN are geared up for more in depth work, but I think you'll come to it when you're ready to. And I agree, if the rest of you are feeling better, it would feed into the overall family dynamic and will definitely help your son, in some way.
I think you're doing tremendously well. I struggled with bringing up one child and left as soon as he hit 18! Although I have to say, that structure of being a parent, certainly kept me in some kind of check and I had to learn how to live again, from scratch, once I was by myself. It's been an interesting 12 years, but I've found my feet now, so I can now take baby steps to get me where I am going.
Thanks BlueRay. More to reflect on. It does feel very much as though things are happening to me, irrespective of my personal thoughts and beliefs. That's not to say that there won't be some unhelpful beliefs or values in there, but just that I could never, in my wildest imaginings, have dreamt up a polycystic liver that is now at least 5 times its natural size or some of the more extreme issues with my sons. I was actually envisaging positive family times and good health (plus genuinely felt I was on the right "vibrational level" to align with this). So I don't know what happened.
I did read some of Bruce Lipton's work a while ago but could find no examples relating to genetic diseases. It made me wonder how far this could go. Huntington's, cystic fibrosis, my own polycystic liver and kidney disease? In my chi kung and spiritualist groups the thought was that I was expecting too much. My rigid thinking reply was then, of course, "How much would it be appropriate to expect?"
I'll be getting some 1:1 work with MAIN so, under the health and wellbeing section, it'd probably be good to zoom in on my core beliefs. My older son is actually asking for help so, depending on how it goes, he might also approach MAIN for support, which I'll encourage.
Not much chance of our younger son reaching out but if we were feeling better this would feed into the overall family dynamic and possibly help him too.
Overall though, I'm not sure where all of this has come from. I would really have to drill down into my subconscious to discover where this all starts and that could open up a can of worms and another lengthy journey. I think I'd have to look elsewhere than MAIN to support me through that as I don't think they're geared up for depth work.
Jenny Butterfly said:Perhaps, once I've come through the nightmare, I will seem slightly saccharine myself.
That made me smile :) Do you want to be slightly saccharine though? I'd rather be fully sweet :-)
https://youtu.be/kWIagHUqD8A
https://youtu.be/2glUblzp2rA these are just little clips. I don't know if you follow Bruce Lipton but if you don't there's loads of his stuff on youtube. It doesn't just apply to the neurotyipcal brain, it applies to all brains.
We all need help with understanding our diagnosis, due to the nature of autism itself and what you are experiencing now, with your family, comes directly under the heading of health and wellbeing. Even if you simply have a person to sit and listen to you, to hear you, because they understand autism so they understand you, is a huge huge benefit. And if you had negotiated all of those things successfully, you wouldn't be here now, you'd be off living the life of your dreams.
Who else in your family is asking for help? And of course you think the best way they can help you is if they help you with your sons, because that's how we are, we are rigid thinkers. Can you honestly say, without any shadow of a doubt, that you know exactly what it is you and all of your family need right now? We need help to step out of our rigid thinking patterns. That doesn't mean we might necessarily change our minds or whatever, but we need to see different perspectives so we can make informed choices.
It is the subconscious aspect of our minds that we are dealing with, it is there that change occurs. Everything in your life is a reflection of your inner beliefs and thoughts. For example, maybe you think that things happen to you, that you live in a world that has power to do things to you, that we live in a chaotic world? Who knows? I have exercises I do with clients that get to their inner beliefs. It's not difficult, you just need tools. Maybe you have a belief that you are responsible for your children's happiness and wellbeing? If you have that belief, you're going to have a hard time in life.