Not conforming

Hi all, I new here and didn't know where to begin. To avoid the very long read below: how do you motivate a teenager ( who is on the spectrum) to try to participate in everyday activities or conform to social norms even slightly if they do not see the point and don't accept that norms should be conformed to?

Please bear with me if I sound impatient with my son who has enough to deal with and massive anxieties around everyday life. I am not new to autism but only recently accepting that his life is not going to be the way I expected it to be.

Long story:

My son is 18 and on the spectrum. He managed to get through mainstream education with 25 hours classroom support per week and passed his GCSEs and BTEC. School was a struggle as his social skills were so poor, and he often lashed out verbally at other pupils and staff. He was often taken out of lessons due to anxiety. Nevertheless he wasn't too unhappy at school although he was adamant that after GCSEs he wasn't going back. 

Since leaving school he has tried two different college courses which he was unable to maintain longer than a few months due to poor executive function and anxiety (which led to behaviour jssues). I fought hard to get support for him in college but he got so far behind with his work (I don't think he did any any, at all) that he hated college and refused to go back. It didn't help that his first attempt happened during lockdown so he had to work from home, which was hard.

He is now on a course which prepares students to work if they are not in education or training 

Since he left his last course I'm feeling more and more hopeless about his future. While he was in school with support it was easy to forget how difficult everyday life is for him. He is high functioning and gives people the impression that he is intelligent but there are so.many things we take for granted as easy to do but which he can't do without a LOT of help.

While he was in school I  put off worrying about what we would do next as he seemed to be coping, and persuaded myself that things would fall into place.  I really underestimated how hard things actually are for him. Now that the routine and familiarity of school has gone he seems adrift and has gone really downhill. His mental health has deteriorated and he often feels depressed or anxious. (Yes, we have tried getting help from the NHS). He won't engage with any of the support services we were able to find in the community as being around people makes him anxious. He is close to dropping out of the skills course.

As I said his executive function is poor. He can't organise himself to get dressed, wash, eat clean himself, wear clean clothes or anything without support. He can't remember things he's supposed to be doing, appointments etc. He can do all these things with a lot of prompting but is incredibly challenging about it. He can be verbally aggressive if asked to do basic things like get up or put clean clothes on. He challenges me on why he has to do anything like try to adhere to a daily routine, plan for the future and work towards paid employment  - why should he participate in society at any level? Or even wash his hair, ever. I can't answer him because logical arguments do not work.

I realise I come across as not very understanding of his limitations and  apologise if this is offensive. I love my son so much, I think I always assumed things would get better as he got older (and never really realised how hard life was for him until now). I'm only now facing up to the reality that he will not lead a typical life, and it is scary. 

Ifanyone has any advice on how I can be a better parent to him I will take it as I know I need it.

And if anyone has advice on getting teenagers to do thigs they see as pointless, please send it my way too

If you read this far, thank you so much for your patience. I know we're all struggling and many have it so much much worse than our family.

Parents
  • Reading this my heart goes out to you - it really does! Some of the things you’ve written here remind me of my youngest sons situation. He’s also very intelligent but struggles with so many aspects of life - especially day to day things like you mention - such as motivating himself to wash, getting dressed etc. Just everyday things. Like you I absolutely adore my son - I love him so much - and LIKE him so much!) and often worry that I’m failing him because I don’t always know how best to support him. He’s also dropped out of college temporarily due to anxiety and difficulties with his Selective Mutism (which only effects him when he’s in college). My son is a wonderful person and it’s been hard to see him consistently struggling when he goes out into the world. We’ve found it extremely hard to get support for him - even though he has an EHCP.
    I wish I could be more helpful in terms of advice - but I’m afraid I don’t have many answers as such. In many ways I’m like my son as I’m autistic too - which helps in some ways (as I can understand and relate to his difficulties and strengths) but in other ways it perhaps makes me less able to help him. We are great friends - and I feel my main ‘job’ is to make it clear that he has my unconditional love and support no matter what happens in his life. We have a huge amount of trust between us and he talks to me a lot - and I feel that’s important as when he’s really struggling he opens up to me about that. 
    Like you I worry about the future - and also like you I think in some ways I’ve tried not to think about it sometimes while he was at school - but as they approach the harsh realities of adult life and getting a job etc it does start to get a lot more concerning. 
    My son is out of college at the moment and when things ease with the virus cases (if they ever do!) we are going to look into volunteering opportunities etc. I’ve talked to my son about this and he doesn’t rule it out - but when it comes to it I think he’ll find it difficult to try that. He tends to pull back from things that take him out of his comfort zone. 
    I’m not sure what the future holds for us, in some ways I think it’s best not to allow ourselves to look that far ahead - because it can feel overwhelming. No one is going to come to our rescue and solve all our problems - that’s for sure. I take comfort from the fact that my son will always have a home with us - and when we die we will leave him our home - so at least he won’t be homeless. I will teach him all the independence skills I can. And hopefully he’ll be able to find some kind of job that can cover his basic needs. He has a sibling who I know will always be there for him. So that’s our ‘plan’ - such as it is. But I know it won’t be easy - because it hasn’t been easy for him and he’s already known many struggles in his life. He is a wonderful human being - and he deserves happiness and love and security. I have to hope that he has the good life he deserves to have - and can be happy in this less than ideal society that we live in. It troubles me greatly that our society does not care for the most vulnerable in the way it should. 
    I’m sending love to you and your son. I’m here for you if you ever want to talk. x 

  • Thank you so much! It sounds as though our circumstances have a lot in common and it's reassuring to hear from somebody who knows what it's like :) 

    Your son is very lucky to have you. 

    All I really want is for my son to be happy. Whatever he does with his life, if it makes him happy (and harms nobody) then that will be a great result for us. The trouble is that he isn't happy right now, and as he becomes more aware of his  limitations he is becoming more unhappy and doubtful of his own abilities.

    He has some wonderful qualities and can be great company and very funny. He is difficult but has always been unconventional from day one, but I'm proud of what he has overcome so far

    I love him unconditionally so much, and maybe that's he most important thing right now,: To just be there until we know what to do

    Thank you again xx

Reply
  • Thank you so much! It sounds as though our circumstances have a lot in common and it's reassuring to hear from somebody who knows what it's like :) 

    Your son is very lucky to have you. 

    All I really want is for my son to be happy. Whatever he does with his life, if it makes him happy (and harms nobody) then that will be a great result for us. The trouble is that he isn't happy right now, and as he becomes more aware of his  limitations he is becoming more unhappy and doubtful of his own abilities.

    He has some wonderful qualities and can be great company and very funny. He is difficult but has always been unconventional from day one, but I'm proud of what he has overcome so far

    I love him unconditionally so much, and maybe that's he most important thing right now,: To just be there until we know what to do

    Thank you again xx

Children
  • I wish my son could meet your son! It always makes me sad that so many autistic people are so isolated - when perhaps if they got together they could be a great support to each other. They are far from alone - but often don’t feel that way. I’ve found this community on here to be incredibly supportive, friendly and so full of great ideas. So keen to help others too. 
    Your love for your son shines out - just knowing that you are 100% there for him unconditionally will mean so much to him - even if he doesn’t show it I’m sure he knows that. We all need that - to know that someone is 100% on our side - no matter what happens. We have to be that person for our children - no matter how hard life gets. They have to know that we don’t judge them, no matter what they do or don’t do. 
    They might struggle out there in the world (this very dysfunctional and often harsh and unforgiving world) - but they need to know that there is nothing WRONG with them, they are wonderful, valued people and they are loved. Just because they don’t ‘fit’ with many of the demands society places upon them does not mean that they are ‘broken’ - it’s not their ‘fault’. Your son might not ‘thrive’ in the conventional sense of the word - he just needs to find his own way, his own route to a life he can enjoy.