Son struggling to leave the house and School refusal

I’m sorry, I don’t think I’ve got any ideas but I cried as I read that. I remember feeling the very same way. I was absolutely desperate to stop anyone finding out about my differences. I wasn’t diagnosed or anything and didn’t have the support and understanding your son has, but I remember that feeling.

I would have months and months off school, which didn’t really matter back then, it wasn’t like today when parents get taken to court if their kids don’t go to school. Your son speaks my language, such as, I’ll NEVER do that again. I didn’t even realise I did that until my support worker recently pointed it out. Long story short, I spent my whole life masking, believing that if I could just get it right, if I could get a boyfriend etc and do the things that other people do, then maybe I’d be ok.

I was horrified to find that yes, I achieved all those things, in fact, I got amazing at fitting in, only to realise, that none of it meant anything. I had built up a big life, I have a huge circle of friends, and they’re all genuine friends. I was able to keep them because I move around all the time, to different parts of the country and world. I’ve built up such a huge life, that even though I’m on the dole, I wouldn’t even consider getting out of bed for less than 10 grand a month, and I only work three weeks a month and not full days or full weeks. I have friends who are millionaires and all sorts of friends, but my friends now, my autistic friends are my true friends, in that they’re like me, and I didn’t realise that that’s what you do in life, you find people who are like you, to spend time with. I got it the wrong way round. I would try to change me to fit other people. I didn’t know any different because I was completely blindsided by the belief, that I had to, at all costs, be like other people and fit in to be happy.

This shut me off, almost completely to who I really am and my own gifts and talents, likes and dislikes etc. However, I have also discovered that what I really love to do, is to simply be in my room, play my game or research my favourite people or subject, eat and drink only when I have to and have as little contact with the outside world as possible.  But making friends with the people at my autism group changed all that. I learned that we all need friends in life, they open our world up, they bring joy, comfort, support, fun, laughter and all the good things life has to offer. None of these people are anything like me in many ways, but they’re everything like who I am and they’re my genuine friends. It’s like I’ve found my tribe. My other friends are still genuine and I love them and I’m grateful to them but these new friends are just like me at a fundemantal level and that makes all the difference. 

However, I’m truly grateful for all my experiences because my parents aren’t the type to push their children. And as Temple Grandin says, we need pushing. My pushing came from being forced to find my way. I could see the landscape out there and it was like mission survival. I didn’t even know who these people were that called themselves my parents and now I love them and know they were perfect for me. The truth is, I had to find my way through the jungle and in doing so, I learned many skills and life lessons that I would not have got if they had just stuck me in a room and let me get on with it. I had to face the life because I didn’t even trust the people around me to look after me. 

It’s hard to be yourself when everyone around you seems different to you somehow, (before you get to fully know who you are) - and as children, were just learning that and we learn from those around us but if those around us don’t make sense to us, it’s difficult to trust yourself and be yourself. I can remember standing in the school playground around the age of five, thinking I have no idea what these kids are doing, I just had no idea what was happening around me. I never got it. I have only recently learned that you go to school to get educated so you can get a job etc. It’s crazy, because I always had a certain intellectual level of intelligence but I had no idea what was going on. And when I worked it out, I didn’t like what I saw and I still don’t. But in finally understanding me and accepting me, and I suppose with all my life experiences (I’m 51), I now finally feel no different to anybody else. Yes, clearly, the way I experience the world can be called autistic, but in truth, we are all different but nobody seems to see that and they focus therefore on some people’s outside differences, like it’s a thing, to be different. We’re all different.,

I don’t know what I’d tell my 10 year old self, I’ll have a think about it. I know I used to write letters to god, and that used to help. How do you try to tell a 10 year old child, something that most adults never understand? I would recommend taking a look at Temple Grandin, I think she does talks etc on how to support children. She is all for honing in on their talents, their special interests etc but also with a certain degree of pushing the children but not to try and make them fit in but to expand their world so they get more joy from being in the world. 

I now fully appreciate the people in my life, my life experiences etc and see them all as truly beautiful, I see the good in all of them. But that’s easy to say when you’re through the other side and it’s not easy to say how you got there. 

Are you part of a local group for parents with children on the spectrum? I think this is crucial. Most people take many of the important ingredients of life, from the people around them, who are in similar situations. When we’re not closely connected to others who are in similar situations, we miss out on many important ingredients of life. Being part of my local support group has been a game changer for me, as it has been for my friend who has two children on the spectrum, one in mainstream school, the other not and a husband on the spectrum. She has some fun and games and couldn’t do it without the support and friendship of her group. It’s incredible how her life has changed over the years, their careers have changed, everything’s changed, but their son is growing in ways they never could have dreamed and as hard as it is, a lot of the time, she really enjoys her life now and her sense of humour is on point. I think what I’m saying is, it’s a process and that process is made all the more easier and pleasant with friends who are in the same boat. 

And I’m still like your son, at 51 years old. I still use avoidance, delaying, compulsive behaviours and rituals, they’re all still there, I have simply found that when I’m living my life according to me, it’s like all those behaviours disappear. They’re still active because of course I have to interact with life to some degree, so I’m simply arranging and creating my life so that all my bills etc are done automatically, that I have a manager or personal assistant or something to help me manage my life. Instead of forcing myself to do things the usual way, I am finding other ways to do things that get the same results. I’ve realised, I’m never going to change, this is who I am, I simply have to find my place in the world in a way that works for me, which I think probably takes time for most people. So I’m sorry I can’t offer any good ideas but I do highly recommend giving a support group a go and checking out Temple Grandin, if you haven’t already. She’s got a few YouTube videos I think, I know I’ve watched a couple. I always bare her in mind because I know she takes a small dose of antidepressant and it works really well for her. Antidepressants work to make me less abrupt in company and they calm my mind but they don’t seem to make me feel any better! But that’s what nearly all the autistic people in my group say. We say it doesn’t make us feel better so we won’t take them but the people closest to us all say we’re much better when we take them! Mmmmmm I think we could be missing something! Lol! So I haven’t ruled them out completely, but I’m going to have another go at living without them but I am definitely less tolerant of anybody who’s not like me!!! Nearly getting kicked out of the job centre 3 times and getting kicked out of an art gallery! I’m talking more ‘at’ people than with them, so I recognise I do need to find a balance if I want harmonious and peaceful relationships in my life. 

My heart goes out to your boy but it’s a comfort to know that you are supporting him. I don’t think I could have got through school without frequent breaks. Maybe there’s a way that he could do some schooling away from school and some there so he still gets the benefit of the social aspect of school. My belief is that we have to work around the child’s needs, to find a way to provide them with what they need in a way that works for them. I think it’s always a good idea to keep everybody on board, to not fight with schools etc, take a sort of Ghandi approach, believe in what you’re doing and simply refuse to defer. If the schools are really not playing, you’re right, don’t fight with them, go elsewhere if you can. 

What comes to mind when I read your last sentence, was a YouTube clip of Tony Atwood where he helps a little girl understand herself https://youtu.be/vdQDvLXLqiM

You need somebody who understands autism. I am so open with my autistic friends. I just come out and tell them things that I would never tell somebody else. So I think it’s not that we don’t open up, but that it takes the right people, the right environment etc, the right reason. Sorry if I’ve gone on and on and confused you. I just recognised those same feelings and behaviours etc in myself and sometimes sharing our experience can help others, but if it doesn’t that’s ok. I truly admire you, I don’t know how I would of managed if my son had been autistic. Fortunately, he was able to help me. We were like that tv program, absolutely fabulous, he was more of the parent type than I was! Lol! 

I never got it. I have only recently learned that you go to school to get educated so you can get a job etc. It’s crazy, because I always had a certain intellectual level of intelligence but I had no idea what was going on.

If someone had asked you why people wanted to get educated or other people wanted them to, would you not have been able to answer at all? Or would you have said that probably in some way (from adolescence onwards at least) that people were aspiring to a job and trying to get suitable qualifications, and then might want to do all the house and marriage stuff? But maybe if you knew that intellectually, you still couldn't connect to that reason. Did it feel abstract and no more real than any other connection?

Do most people think that way? And if so, how do they come to think that way? Do kids' parent repeatedly explain to them why it's important to study and work hard? Or can people just see what's going on in their own family, peer group, and beyond and want to imitate? I don't recall anyone explaining the facts of life to me in that way.

Is it also possible that things have changed a bit from our day, and education used to be for its own sake, but is now for economic reasons?

Even if someone had told me you go to school to get educated so you can get a job (which maybe they did) it wouldn't have meant anything. I had no concept of time, so anything happening in the future wouldn't make sense. I used to ask questions but people either didn't know what I was talking about or they thought I was being naughty or something. I never wanted to do all that house and marriage stuff, I don't think I thought it applied to me, somehow. I had no natural inclination to even be friends with anybody. I didn't even know what that meant. I learned how to make friends by copying and getting good at it but I had no idea why I was doing it and often wondered if other people knew what they were doing. I'd stopped asking so many questions by this time. I did have one friend in my first year of school and I've never forgot him. He was sent away to a special school while I was left behind. One day he was there, the next he was gone. 

Education today seems like an horrific prison sentence to me. i don't really like it at all. I don't really like this life. I want everyone to think like me. But they don't, and I've got a life so I'll somehow create a life that works for me and hope that I can somehow make things better for the kids coming up behind us and for those who can't make things better. It's a big world out there and all we can do is our bit. I ask different questions these days but I still don't know what's going on most of the time! Lol! 

Even if someone had told me you go to school to get educated so you can get a job (which maybe they did) it wouldn't have meant anything. I had no concept of time, so anything happening in the future wouldn't make sense. I used to ask questions but people either didn't know what I was talking about or they thought I was being naughty or something. I never wanted to do all that house and marriage stuff, I don't think I thought it applied to me, somehow. I had no natural inclination to even be friends with anybody. I didn't even know what that meant. I learned how to make friends by copying and getting good at it but I had no idea why I was doing it and often wondered if other people knew what they were doing. I'd stopped asking so many questions by this time. I did have one friend in my first year of school and I've never forgot him. He was sent away to a special school while I was left behind. One day he was there, the next he was gone. 

Education today seems like an horrific prison sentence to me. i don't really like it at all. I don't really like this life. I want everyone to think like me. But they don't, and I've got a life so I'll somehow create a life that works for me and hope that I can somehow make things better for the kids coming up behind us and for those who can't make things better. It's a big world out there and all we can do is our bit. I ask different questions these days but I still don't know what's going on most of the time! Lol!