Published on 12, July, 2020
Hi all, first time poster, thanks for letting me join the community.
My wife and I have 3 children - 2 daughters (1 who turns 13 next month, and the other who is 17), and 1 son (age 19).
Both our son and our youngest daughter have received a diagnosis of autism in the last few years. Whllst our youngest daughter is struggling somewhat at the moment as her diagnosis is recent, we our coping with her issues to some degree.
The main problem is our son:
* He pretty much stopped attending school when he was 14. We later found out from the teachers at the school that he had been going missing during lessons and hiding away in the toilets (something they initially denied was happening). He also did walk out of school on several occasions, and on one occasion walked 3 and a half miles home rather than stay in the school building.
* We attempted to get some help for him and he was later placed under the care of a tutor in additional education provision. He struck up something of a rapport with the tutor, and whilst his educational attendance still suffered (his GCSE results were terrible), this provision was a help to him. Unfortunately it ceased when he reached the end of his schooling.
* He agreed to attend the local college to attend taster courses, but then when the time came he reneged on this agreement.
* He has also been given diagnoses of Dyslexia, ADHD, Anxiety, and Depression.
Since then, he has been pretty much a shut in. He likes playing computer games to the point of obsession. We did have a break from this when his PS4 console broke irreparably, but then after a few months he started playing the same games on his mobile phone, and then eventually last year he bought himself a PS5 console with money he received from a Child Trust Fund when he had turned 18.
He barely leaves the house now. We did get him to come to Scotland for a weeks holiday last July, and he attended his sister's 17th birthday at a restaurant last July, but apart from that has been nowhere. He even missed the funerals of both of his paternal grandparents last year.
We have a dog, and he loves her, but she was attacked a few years back, and because of this does not want the dog to go out for walks - he has forbidden myself and his mother to take the dog out (we have to sneak her out occasionally when he is sleeping).
His sleep pattern is appalling as is his diet (and this is coming from somebody with a bad diet).
His personal hygiene has also now started to suffer. Up until the last few months he took showers and changed his clothes regularly (he actually used to take an age getting a shower, it was a nightmare if he got in the bathroom and you needed the loo). Now however, he refuses to shower and change his clothes. He uses deodorant sprays to mask the smell (it doesn't work, he smells like vomit).
If you ask him to take a shower, take the dog for a walk, change his clothes, be quiet during the night when he's playing his computer games, you're met with either a 'No' or a volley of abuse.
He's a big strong bloke, and to be frank I'm a little afraid of him. We had a disagreement over something last year and he pushed me over, and it was, I imagine, like being hit by a car
He wont accept any medical help, or psychiatric help, or talking therapy, as in his words 'none of it works'.
I and my wife, and the rest of the family are at a loss. We need to help him, but we don't know what to do. He's existing at the moment, not living.
I'd appreciate any help , advice or guidance available.
Many Thanks.
Ah, this is hard. I believe you need a caregiver. Ask your health care physician about local government resources for you and your son. Autism groups may help him meet people with his condition and get additional support.
This is a tough one. I'd suggest you definitely need some carer's support. I'd talk to your GP to see what you can get for yourselves from the local authority and what there might be available for him - say local autism groups where he might feel better about mixing with other autistic people etc, if he can be persuaded.
It's so hard I know my son is same he be 24 on the 17 of Jan 2024...also a shut in..it to me feels like the autistic brain kinda sabatages any possible progress ie the rumination and focused narrow attention on something ie the dog or anything for that matter..unfortunately that's the way there brain works to deal with things..sometimes very helpful (adhd the same as autism in the next example) focusing on a positive project ie they could learn to play the violen in 5 minutes as they hyper focus..but then if is a negative thing they focus in on that and it's tough they can't help it. You feel like as a parent you have to a degree a certain intuitive understanding of how they're feeling ie you learn to read the cues over the years of if they are happy or not however parents are not born with a manual on autism and fact us neuro and autistic mind different as I said there's so much intuitive feeling you can have but then there comes a point a which you hit a wall and feel out of your depth at a loss as you say ..me same with my son I can go so far and then its like you don't have anything left..myself i feel my son would benefit from professional help and I feel that's where your at but he doesn't want it you say and obviously it's in his best interests even if he doesn't see that. A suggestion I would make is to get him that help pay for someone to come to the house and leave it to them they deal with these things everyday it's there job and they're there to help you and your son...you could be sneaky and say to him hey doctors coming and you need to see them as a general health check..sometimes if you give it like an order it can work and then make it a regular thing get him.used to that and if this helper can get them back up to speed so to speak..then look at assisted living and have that helper and yourself work on the transition there as it'll be much smoother..I mean how would you feel if you were all warm n fuzzy at home and then suddenly somewhere else away from any previous care you had. Tbh there needs to be more community spaces for them to go where they can be at ease with others dealing with similar things . Not much help I can give as we all in same boat. I just hope there are some decent professional who can actually help make some progress..my friend her job is actually as an assisted living ..not sure exactly what she does in it I haven't asked her but am hoping to ask her if there are professionals who can come to the house and can it work or is it just wishful thinking. After I've spoken to her I'll put a post on here entitled "home help" so you know it's me and can read if it's possible. What I meant earlier is get him doing the basics with the helper at home first and get them to help transition him into assisted living..however the only thing I'm thinking is that he'll be without his beloved dog...so maybe if he makes progress at home he could stay there..do his other siblings help support him? As I said if I find anything out from my friend I'll let you know and then you'll have to search in your own local area for that type of professional. As I say I don't know myself what these people are called or where to go.
I wonder whether, given his age, you could tentatively broach the possibility of a supported living arrangement (via the council?) This would give you respite and compel your son to take more responsibility. As I don't know your son and his needs, I have no idea if this would be appropriate, but it might be an option.
sounds pretty standard.its a hard fix and alot of change will require luck.but yeah you need to find a way to get him self motivated somehow, but thats hard to do and requires you to know what hed like. for me it was training martial arts and doing fitness to be more badass than anyone. ofcourse you also need to remind him that you wont be around forever and make sure he knows hes on borrowed time there and time ticks fast and before he knows it you will likely be deceased or in a retirement home and hed be left homeless with no plan or clue or idea, you need to make sure he knows that because that seed in his mind will create positive worry, and that worry i call positive because it will make him think what he can do to avoid falling into homelessness and he will start to think on it and perhaps make plans and get ideas, this is what helped me as i was always told my parents were selling up and moving to cornwall and they werent taking me with them so i had like a 3 year timeframe to sort myself out or be homeless and abandoned in the world.