Challenges of being Parent of Young adult with autism - any advice ??

Hi,

I have just joined this forum as I am a parent of an adult of 20 who received an autism diagnosis last year. I encouraged my son to seek a diagnosis because he has really struggled since leaving school to find his way. He has dropped out of two college courses, he doesn’t seem to be able to apply himself, and he has had two part time jobs which he has left after a few months because he found them too boring and difficult. I have tried to encourage him to find work but he is not interested. I know it sounds like a cliche but he spends most of his time in his room playing computer games. He stays up late and sleeps until around 1 if I don’t ask him to get up. We end up having a lot of arguments, he is very oppositional and demand avoidant. If I ask him to help with housework it usually ends in an argument and he is increasingly verbally abusive towards me, swearing and calling me a b**ch. he sees me as being overly critical of him, which I know has been a problem in the past, I didn’t know much about autism or even that he had the condition - since finding out , I have tried to learn and change how I deal with him but I do still get frustrated because his behaviour is very challenging. I feel that he sometimes uses  his diagnosis is a licence to avoid doing anything he doesn’t want to do. Last night he had a melt down after I asked him to wash his dishes, we had an escalating row which ended in me asking him to leave the house because of his abusive language and threatening behaviour. I am now regretting how I handled this situation but he was being very abusive towards me and I was at my wits end. He is now staying with a friend. Today I contacted him by text to say he could come home but I would like him to follow basic ground rules of helping more around the house and going to bed and getting up at a reasonable time. This resulted in another barrage of abuse from him, basically saying I don’t understand anything about his condition and am a terrible parent who has caused all of his problems. It’s really upsetting because I feel I’ve tried to help him but everything I do  is interpreted as me being controlling or meddling. 
Anyway, I wanted to reach out on this forum to see if there are any parents of adults with autism with similar experiences and how have you managed your situation. Thanks for any advice. 

Parents
  • You are not alone our son is similar and we had that moment where he was bordering on abusive and we sent him to have a few days with his brother so we could negotiate a way of living together that works for both of us ,

    He wouldn’t come back, turning down the lift and bed at his brothers he chose to sleep outside Tescos telling everyone he’d been made homeless which wasn’t true.

    in the end he got sheltered accommodation .

    He now admits he wasn’t made homeless he wanted to be independent. He had to go on benefits to get the housing but had refused to work of go on benefits for a couple of years at home .

    things are not the best but our relationship has improved and he calls us most days for s chat .

  • I think the story above indicates that it’s important to resolve these difficulties way before they get to crisis point. To have a young autistic person sleeping rough outside a supermarket is obviously unsafe for them, and I would be worried sick if my son was doing that. If we can maintain trust and communication with our children throughout their childhoods then hopefully a situation like that can be avoided. Navigating life a an autistic child and young adult can be incredibly difficult and they are often under a tremendous amount of pressure. Sometimes that can be expressed in meltdowns, shutdowns, depression etc - so they are not always ‘at their best’ for obvious reasons. What they need is to know that their parents are 100% on their side through thick and thin. Obviously abusive behaviour is unacceptable from anyone but there are ways to deal with that and to prevent it too most of the time. Autistic people are at higher risk of suicide, and young men are at higher risk of suicide too. The option of ‘laying down the law’ and issuing lots of rules and ultimatums when someone might be very vulnerable can have serious outcomes (like the young man above who ended up sleeping rough) - it’s best avoided. Our children need kindness and understanding. The rest of the world is often judging them, the education system can be often be traumatic for them, so home needs to be a safe place, ‘a soft place to fall’, somewhere they can relax and unwind, and recover from the tension of being an autistic person in a neurotypical world. 

  • The option of ‘laying down the law’ and issuing lots of rules and ultimatums when someone might be very vulnerable can have serious outcomes (like the young man above who ended up sleeping rough) - it’s best avoided.

    To be fair to NAS84594,they did say:

    He now admits he wasn’t made homeless he wanted to be independent.

    I think in most cases a known framework of rules and punishments is probably important in their lives at that stage - there is a natural predisposition to rebel by teenagers (especially males) and the complications of autism in understanding what we feel and how we chose to express it make it a turbulent time for us.

    Having that safety of knowing there is a safe option to choose is often the think that stops us going off the rails completely.

    Our children need kindness and understanding.

    But they also need to be treated as adults - to continue treating them as children is going to make them act out even more in many cases. To give them the safety net of the family support if they don't act like a a-hole is not a big ask at all.

    It also gives an soft introduction to what they are about to face in the "big, bad" world of work or further education where actions have much more serious consequences.

Reply
  • The option of ‘laying down the law’ and issuing lots of rules and ultimatums when someone might be very vulnerable can have serious outcomes (like the young man above who ended up sleeping rough) - it’s best avoided.

    To be fair to NAS84594,they did say:

    He now admits he wasn’t made homeless he wanted to be independent.

    I think in most cases a known framework of rules and punishments is probably important in their lives at that stage - there is a natural predisposition to rebel by teenagers (especially males) and the complications of autism in understanding what we feel and how we chose to express it make it a turbulent time for us.

    Having that safety of knowing there is a safe option to choose is often the think that stops us going off the rails completely.

    Our children need kindness and understanding.

    But they also need to be treated as adults - to continue treating them as children is going to make them act out even more in many cases. To give them the safety net of the family support if they don't act like a a-hole is not a big ask at all.

    It also gives an soft introduction to what they are about to face in the "big, bad" world of work or further education where actions have much more serious consequences.

Children
  • None of us can truly understand the workings of another persons family. I don’t there is judgement here, it’s just people sharing their own personal experience in case it might be helpful. If it’s not helpful then please ignore it. Your experience is obviously very painful and complex and I’m really sorry that your whole family have experienced so much distress. I hope things will improve in time for all of you. 

  • That’s very kind of you to apologise Iain - thank you. I do understand where you’re coming from and everyone has their own approach, and everyone is different. I think I probably have been very fortunate in that my children maybe have the type of nature that made my job as a parent easier in terms of confrontation etc. The vast majority of the time they were just really well behaved. So I don’t pretend to have the answers for anyone else, I’m just sharing my experience as you are and it’s all valid and only intended to help for all of us I’m sure :) 

    In terms of what I’d do I stick with an approach of ‘let’s wipe the slate clean and state afresh with no judgement’ - even if it’s been tried previously. But you really have to MEAN it - no judgement. Genuine forgiveness without grudges. Most people don’t WANT conflict with their parents. Like every problem in live you have to be a bit of a detective, in a very gentle sense with loved ones and relationships. I don’t believe many people don’t respond to love, compassion and a true desire to help. I believe it’s always possible to improve a relationship if there is still love there. And I don’t believe that relationships improve with a mindset of ‘punishment’. The very concept implies a power imbalance - and this young man is 20 - he’s not a child and so there should not be a power imbalance in a way their sort of has to be with young children. 

    Ultimately we all want to be loved, to be understood, to be valued and to be happy. I’m sure this woman’s son is not enjoying things being like this, and I’m sure he wants things to be better too. He’s probably lonely and wants to have a good relationship with his family. Deep down he will want to change the situation too. 
    I believe there is huge hope that that can and will happen. 

  • I have to say I find most of these comments very judgemental and wholly unhelpful.

    I know we had no rules as such but we did encourage him not to deeply wound other members of the family .it was verbally abusive behaviour we were asking him not to do. Eg he decided he didn’t like the person his favourite brother ( we have 7 kids) was marrying. He kept sending her abusive texts even on the morning of the wedding. He told them he was going to object in the objection bit in the service and sat outside glaring at everyone going in the church

    This was the sort of behaviour we weren’t happy with and you bet we had many hours listening and kindly reasoning to no avail

    we know and understand the hurt and difficulty autistic young adults face and I’m sure of us use bucket loads of completely unappreciated compassion but there comes a point where

    whole families lives are ruined and torn apart and cruelty and abusive behaviour needs to be discouraged for everyone’s sake particularly the autistic parsons

  • I was in his mothers shoes I would ask to sit down with him and have a fresh start.

    It sounds from the initial post that this was tried and failed due to his confrontational responses, and that olive branches are being torched by him too. That was why I was suggesting a more logical, rules based approach.

    I have firm boundaries with my children, but I didn’t ‘punish’ them.

    How do you deal with it when they knowingly breach the boundaries as the OPs son has? Talking about it results in abuse and confrontation so I'm genuinly curious about how you would deal with this hostility.

    I don’t think being compassionate and trying to encourage a collaborative approach to this situation is ‘rainbows and unicorns’ as you (patronisingly!) categorise it!

    I apologise for being patronising. It comes from a place of frustration and has no place here.

  • Hi Iain, I can see that we have very different approaches to this and we are not going to agree - which is fine. 
    I don’t think being compassionate and trying to encourage a collaborative approach to this situation is ‘rainbows and unicorns’ as you (patronisingly!) categorise it! When autistic people become adults I think it’s important to treat them like adults - not like naughty schoolchildren who need to be ‘trained’ with ‘rules and punishments’. It’s about mutual respect. I have firm boundaries with my children, but I didn’t ‘punish’ them. I realise that I’ve obviously been very fortunate because for the vast majority of the time my children have been respectful and kind in our family unit. I’ve always listened to them and respected their positions because they’ve always tried to do their best. With my eldest we went through a period where there were more arguments and it was upsetting, but we had very strong foundations to our relationships that meant we were able to get through those difficult times without too much pain, and certainly no long term damage to our relationship. We have always respected our children and it has resulted in them respecting us in return. It’s not perfect - no relationship is - but we all know that we are 100% on each others side. We know to forgive when we have a rocky patch, and to move on and not hold a grudge.  I’ve never ‘punished’ anyone in my life, with my children I simply explained why certain things were a problem and they were thankfully bright enough to understand and take that on board. We say sorry and we mean it, we accept apologies and don’t hold a grudge. Being autistic is far from easy and sometimes stress can bring out the worse in us, or make us withdraw from life. We need to be forgiving of that and not be too harsh or judgemental when people feel overwhelmed. The young man in the original post only got his diagnosis a year ago and he’s probably still coming to terms with that and re-evaluating his life and what it means for his future. It’s a lot to take on. Of course it’s no excuse to abuse anyone, and if I was in his mothers shoes I would ask to sit down with him and have a fresh start. Wipe the slate clean and say : how can we do this better? Tell him I love him but I can’t accept abuse, but at the same time say that let’s forgive and forget and start again. Where is this anger coming from? What can I do to help? Can we work together? Drop the judgement, harshness and criticism on all sides and start again. That’s what I would do. 

  • Do you get ‘punished’ when you’re struggling with motivation or to do the right thing?

    I believe punishment is absolutely required when it comes to the abusive behaviour described - it may only be getting told NO in a firm voice but from what the OP describes, he has not been receptive to requests, reasoning or being motivated.

    As for the rule breaking - a better description would be actions and consequences, but breaking rules have consequences which are by definition punishments. This may be simply you don't do the dishes then there is no evening snack, or, you don't walk the dog then you don't get to watch your TV program. Consequences - punishments - all semantics at this stage.

    From the descriptions of his behaviour he is being stubborn, confrontational, lazy and abusive and manipulative - quite dangerous signs for someone at the age of entering into the adult world.

    He is now an adult and needs to understand the consequences of his actions and cannot use his diagnosis as a "get out of jail free card" for however he behaves.

    Managing the rules in a family environment where support is still available is likely to be his best chance to adapt to acceptable behaviours without the risks of doing it in the "real world".

    I think he mother is being compasionate but he is repeatedly confronting her, being abusive and shirking what few responsibilities she asks him to take on. What about her mental state? Does the son have all the rights to do as he wants here?

    Where she has tried to help or get him help, he is lashing out at her as being controlling and manipulative - but she is learning more about autism which may bring results further down the line.

    I believe he needs to be given a clear understaning of what is acceptable behaviour and the description of what happens if he knowlingly abuses the situation. I'm sure the mother can differentiate when he is having a meltdown or when he just is not willing to do his chores.

    Almost every adult male I know has gone through this sort of stage at some point or other and they all agree that this was a growing up challenge for them, making the transition from pampered child to independent adult and learing what the real world is like.

    As for helping him with his issues - there seems to be no way into his world at this stage and any attempts are being rebuffed using the same approaches that have worked so far. He has changed (probably with adolescence) and the approach has to change to be able to reach him in my opinion.

    He got this far without major issues from his autism so I'm not really sure that it is a big factor now.

    I'm not as much rainbows and unicorns as many would like but I wanted to offer my opinion as someone who has been through similar issues as the OPs son.

  • I find your choice of language (‘rules and punishments’) very troubling. The person we are talking about is a 20 year old man. Do you get ‘punished’ when you’re struggling with motivation or to do the right thing? Does a person who may well have mental health issues benefit from ‘punishment’? I don’t think so. I think in a family - or any relationship - we need to work collaboratively and with respect. And the fact that it’s (as you put it) ‘a big bad world’ out there doesn’t mean you have to prepare autistic people by making home life more resemble that ‘big bad world’. Don’t get me wrong, I would ever condone abusive behaviour from anyone to anyone, but I think if an autistic person is emotionally lashing out it’s often because they are struggling. Trying to work out what’s really going on with them and working together to improve things is much more likely to improve the relationship long term. Most children (or people of any age) are not wanting to just be horrible to their parents for the sake of it. They are usually feeling overwhelmed, or frightened or depressed. What does a threat of ‘punishment’ do to a person in that state of mind? I think it might well make them feel more overwhelmed, more anxious, more depressed, and crucially more ALONE. 

    My golden rule with people and with difficult situations is to try and approach it from a compassionate perspective. Angry people are offering suffering inside. If it’s a stranger then I’ll be honest and admit I try to avoid angry and confrontational people, because it’s too much for me. But with a family member I would always keep compassion at the forefront of my mind and try and work out how to heal the situation. Punishments don’t heal. It’s true that they can teach people lessons, but there are other ways to learn lessons too.