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9 year old becoming increasingly ridged and refusing to leave house.

NAS81237

Hi all just looking for some advice please,  long post do apologise. 

my 9 yr old son was diagnosed with asd and spd in April , he was always challenging from a baby but the year before his diagnosis and after lockdown he started to become more withdrawn , struggling at school ect this last school year and since he has learnt of his diagnosis ( which the Ed psychologist told us he would benefit from knowing and we did in a very gentle positive way) he has deteriorated and externalised a lot of his stress at school which resulted in him lashing out at home and at school and screaming at the top of his lungs. He is very loving one minute and then melting down the next over seemingly nothing we can be mid conversation and this happens. This summer hols I have struggled to get him to go anywhere or do anything . He won’t be told no , his attitude is awful regularly calling me a idiot and lashing out. He has not coped with anyone coming round to the house and on my 40th birthday on Sunday we just had our parents round for a quiet afternoon tea in the garden , he trashed the living room and threw his cup of water down the stairs smashing it , when he calmed down he said it was because he wanted them to go and doesn’t want anyone in our house. He has a older NT sister who’s mental health is effected by all the carrying on in the house . We have a large family and a large group of friends we used to do alot with our friends and family and kids we like to socialise and now we are becoming increasingly isolated and have to take our daughter while one stays behind. My husband and I can not have any time together as I have to sit with him for him to fall asleep and this can take over 1 hour so by the time i am free it is gone half 10 , we couldn’t ask grand parents to have him over night anymore so we have to take it in turns to go to any events separately. He is even now only letting me make his food and will just refuse to eat unless I have made his food fresh can not be a pre made sandwich ect. I don’t know how I am going to get him back to school he won’t try any uniform on or shoes so I have no idea if the shoes fit properly , are comfortable ect . He in main stream school and is currently under a assessment for a ehcp and has group funding for extra ta but that’s between him and 3 other children but he takes most of the tas time as he is emotionally all over the place all day at school. Senco think he will  most likely need to move to a asd provision which I agree but I don’t know how I would get him to transition there . I read lots  of advice about being supportive caring letting him go on his electronics all day as that what he may need and letting him stay at home if he feels more comfortable but the more supportive we are the worst he is and the more he isolates himself and if we try to stick to boundaries he is just as bad it seems every which way we parent nothing works. When he has come down from a meltdown he is very apologetic and says he’s sorry he can’t control it and he feels overwhelmed but the slightest thing over whelms him, even if I go into check on him he can scream at me to get out his room, He is a incredibly bright and loving boy but his need to be away from people is over powering him should I now apply for a disability social worker assessment ? Not sure what to do next to help him when he doesn’t want to be helped he just wants to be left alone in his room watching you tube and playing Pokémon all day, any advice would be greatly appreciated . Thanks 

  • in reply to Homebird

    Thank you both so much really useful advice . It’s wonderful to hear flow things may be from his perspective and how we can help him and give him a sense of worth around the house by helping with a job. Great advice thank you. 

  • Some good advice already, so just a few things from me. 

    It sounds like things are really hard for him at the moment. The fact that he apologies after shows that the things that happen are not intentional. 

    My son who is several years older has spent a lot of this holiday at home. Sometimes he spends a lot of time on technology but he has been able to spend some time doing things with us which is a step forward. This is after a lot of adjustments similar to those suggested above. He finds it very hard having people visiting and needs to have space to be on his own and may in his own time join in. 

    When going places we either go separately or have a discussion regarding the time we may leave to come home and also have something planned if this needs to be brought forward.

    Regarding school, we were able to negotiate regarding adjustments on clothing at Primary School. Also knowing what to expect as far as the timetable is concerned helped. School would need to try to help support him before considering special provision, so discussion with you early on in the term with the SENCO could be requested. When we applied for an EHCP we took note of the days which were most difficult after school as this may help to work out where more support is needed in school.

  • in reply to JuniperFromGallifrey

    Regarding food: it sounds like it's about trust. Most of us can have undiagnosed allergies and health problems. It could be good to get him tested.

    Clothing: note that polyester is the same material as plastic: petroleum based. Buy 100% natural fibres: cotton, bamboo, marino wool, etc. it's a bit difficult with socks and underwear, but 95% is usually good. Can you buy on line and return what doesn't fit? 

  • I wonder if you can't find an Autistic child minder? Someone close to 20ish who can understand when he needs to let of steam and when he needs to do a thing to be boring and responsible. Many of us can be great at that age with young autistics. 

    In my 20's, I might have cried through a difficult process, like going somewhere I didn't want to go. It was hard but necessary. It's just an emotional response to the intensity of impact: We are intensely impacted by everything- physiological, psychological and emotional sensory. This doesn't mean we need others to walk on eggshells around us and if we break something we should learn to take an active part fixing it once we've calmed down. If we don't, we will carry regret or remorse which can weigh down on us as we grow. We need to learn how to reconcile - genuinely. Not by saying meaningless words but through action. Say he broke a tea cup. You might just throw it out because it's meaningless. But create a space and a moment and present him with some glue and your undivided attention to help glue it back together with him. This brings healing to a situation and allows space to teach him about reconciliation without talking about it. Talk about something else. 

    But I would start by instigating all kinds of Actions of Respectfulness - not expecting anything from him, but from you as parent(s). This is the only way to teach - through thoughtful actions (by example) which he will eventually mirror. Autistics already recognise that non-autistics do not mean what they say and that their words contradict their actions. Words are unstable. This can be fun and organic from a non-autistic point of view, but it's a bit nightmarish for us. This is where mindfulness and awareness are best in practice. Become aware of what he does mimic. 

    You might already practice these, but some ideas: Always knock on his door - never enter with out knocking. Never yell to his room. Always ask in advance how he feels about someone coming over this says "your feelings matter". See if you can work though what is happening with him when grandparents come over. From an Autistic standpoint: a new individual with all their 'otherness' changes the dynamic. Disrupts the flow. It can be a daunting interruption. What we need to work out is how everyone can have a good experience. Don't force him to interact without warning.

    There is a difference between treating another with the respectfulness afforded to strangers or dignity afforded to clients (we can do this with our children) versus leaving them to their own ruin. There is a lot of responsibility a parent can take on which will create an example for them and set up proper boundaries for them to grow within.

    Always give a fair amount of warning: You can play games for one hour. Whenever you'd like to start between now and an hour before bed is your choice. You don't have to join, but I have friends coming over on Tuesday at 5pm. Think of what you'd like to do during that time. (Perhaps have one friend you can meet with for short bursts of time to practice with.) 

    Always follow through no matter what unless it is a matter of life and death. 

    Create a chore for him to do a few days per week and do it with him until he asserts his own agency. Create a specific time to do this. Perhaps you don't need the bathroom and kitchen swept every Sunday at 10am. But it will give him a sense of purpose and usefulness. Autistic children need to do things with their parents not be left to 'figure it out' in isolation. We experience too much isolation. Especially from actually being misunderstood and misrepresented.

    And the most important element: never interrupt. If he interrupts you, stop what you are doing, give him an exact amount of time in which you will be available, 5 min, 20, 2. And always follow through no matter what.