Please help - adult son with autism

[WorriedMumNeedingHelp]

I am posting here for advice because I am at the end of my tether with my adult son. He is 23 and has severe autism. He can communicate and is verbal but his behaviour is a problem. DH and I care for him full time but I’m finding it so stressful and exhausting.

We have always tried to do the best possible for him. He has an obsession with games and PCs/games consoles and we have always tried to make him happy but the obsession has now taken over his life. All he cares about is playing games and he has tantrums when he is asked to come off of the games to perform tasks such as getting dressed or having a wash. He has no interest in any other task and when we try to take him to any activity, he is always attached to some sort of games console. We were referred to an NHS psychiatrist who suggested limiting his time on games but he lost his temper and started to hit us and wreck the house by throwing objects etc. This fixation extends to arcade games – he will put his money in arcade machines (he once put in £20 in one session without our knowledge) and then throws a tantrum when he doesn’t win anything. He has also stolen our debit cards before and ordered games without our knowledge online.

As he’s grown older, his behaviour has deteriorated. He regularly punches objects in the house (such as the fridge, oven, TV) and has broken several things by throwing them against the wall. He also self-harms and we’ve had to hide the kitchen knives because he cuts himself. We feel like we are walking on eggshells all the time because he has a meltdown if someone looks at him the wrong way or says something he doesn’t like.

I am feeling very upset and emotional today. We are in the process of moving house which we understand is a change for him but we have done everything possible to help him cope with it. I’ve put a lot of thought into his bedroom. He’s visited the house several times (it has been empty for a while because we’ve been doing some decorating) but today he had it in his mind that we’d hidden one of his consoles in the house - we hadn't. It ended up with him screaming and shouting, kicking and hitting the new oven and one of the walls and repeatedly punching the car interior when DH drove us home. I needed to stop at the supermarket but we couldn’t because of this behaviour.

I don’t know what to do. I really don’t. We have other children and it’s hard for them too. We can never go on holiday or even go to the shops as a family because he will always misbehave. It’s usually because he is anxious about going to a games shop. He often takes his pocket money out and plans to sneak away and buy a game. He is very secretive about it. If anything isn’t to his liking (which it usually isn’t) he won’t express that to us but will throw himself on the floor and start thumping himself in public which is distressing as people stare. Sometimes he will become angry over something minor (such as one of our other children choosing to come out with us when he doesn’t want them to.)

The worst incident happened quite recently when we went to the theatre to see a show he said he would like (based on a DVD he loves.) When we got there, he said he’d changed his mind because he wanted to visit the games shop nearby and started to punch me in front of everyone else in the queue as I was trying to calm him. I wanted to disappear, it was so awful and he misbehaved throughout the entire performance. I missed the first half because I had to take him out so he wouldn’t disturb other people. He came back in the interval and shouted at a man behind him who told him to be quiet, before stabbing himself with the pointed part of his wooden ice cream spoon. We had to take him out and sit him in the car with DH.
We have looked into sheltered accommodation run by the Autism charity in our area. He attends their day centre for half the week and they also accompany him to his SEN college course) but he refuses to look around any of the respite houses. He visited one last year, before saying he was definitely not going to consider it and having a tantrum.
I am reluctant to put him in care because he’s my son and I worry for him but I know it will need to happen eventually as we are now getting older and my DH is finding it hard to cope. He is depressed most of the time and we argue a lot because my son does sometimes play us off against one another. DH comes very close to losing his temper, particularly as DS is often shouting in his face when he is trying to help him get ready for bed etc.

I don’t know why I am posting, I am just finding it very difficult at the moment. We try so hard to support him and have made so many sacrifices for him but he told me recently he sees us as ‘characters’ in a game and ‘sometimes as his family’. It’s so hard to make people understand, especially as he is 23 and the size of an adult. Mentally he is much younger but he is also intelligent enough to realise that he is different and he resents the fact that he can’t be independent like his siblings. Does anyone have any experience of a DC with severe autism, particularly an adult?

(Sorry it's so long. Thanks if you've read this far.)

[LastingLight]

WorriedMum that sounds so hard. I'm sorry, I don't have any advice, other than maybe you should post on the Special Needs board, there might be people there with experience that could help.

[defineme]

Hi
I would second asking for this to be moved to sn board.
my ds is not adult, but age 13 is nearly 6ft and therefore looks it. He has challenging behaviour, particularly at home.
things that have helped are: an asd specialist teaching assistant at school has 1:1 sessions with him based on emails we send her about issues at home...he has modified some behaviours after discussions with her.
he also sees a young peoples mental health nurse who works through things like self harm and inappropriate sexual behaviour.
He goes away for week long trips, paid for by short breaks funding, with the local asd charity. I am hoping they will also find him a befriender too.
I found the book 'people with autism behaving badly' by john clements really good for practical ideas and understanding why ds behaves the way he does.
I know people with adult kids with asd go to our local support group-is yhere anything like that you can access?
You sound worn out and i really do empathise. I also feel sorry for your ds too- he doesn't sound very happy either. It's so hard to combine independence and care.

[Hellionsitem2]

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[Hellion7433]

OP I've sent you a private mesg.

It sounds like you're all caught in catch 22 at the moment and need a break/some support. Can you push the social workers to move him into supported living accommodation locally? He can still see you regularly but you can all have a bit more balance in your lives.

[Debs75]

i completely understand where you all are. ds is the same, apart from being non verbal. we are currently looking at a residential school to offer us some respite and ds somewhere low stimulus. ds's outbursts are around stimulus such as patterns on walls, stickers, blu tac, screws or nails slightly protruding, and especially clothes. he breaks ir rips clothes at least everyday. all my spare money is spent on replacement clothing.
his actions are tearing our family apart. dd1 is depressed and suffers from anxiety and has been referred fot counselling. she has told us several times she wants to leave home. dd2 and dd3 have just started school but are still very much affexted. they hide special toys from ds so he won't steal or break them.
me an dp argue all the time. i think he is starting to crack under the strain but he won't access any help.
you need to see what help is available for the whole family and encourage the family to talk about it with each other. it is horrendous to hear dd2 say she wished ds didn't live with us but she deserves to be heard and she feels better for being heard and acknowledged.
i know you say your ds refuses respite but you need it and i would be very tempted to force the issue. also the gaming needs getting under control, mayve some kind of gamblers anonymous.

Have some or and
autism and adulthood is a difficult time

[silverglitterpisser]

I've no experience or advice, OP.

U sound like amazing parents facing a desperate challenge n I truly hope u get what u need for ur DS n for u n DH.

Sending u , n x

[RandomMess]

Sounds like there is so much going on - his addiction to gaming and your NEED for respite.

It's easy for me to say but please consider respite - he doesn't want to go but your, your dh and your other dc needs do need to be considered and sometimes come first. What happens we you die???? Then he will need some sort of supported living - perhaps you start working towards that now so it can be taken slowly and at the right pace.

Lots and lots of hugs &

[Timetoask]

Op, my son is only 10 (SN not autism), I think challenging behavior is the most difficult part of parenting a child with SN.
For his long term sake and your mental health it really might be the best option to find him a good residential placement

[Goldmandra]

I think you know that you cannot continue to live like this.

Your DS has additional needs but that doesn't mean that his right to do what he wants overrides your right to any quality of life.

I have two DDs with AS (although I'm lucky and they should be able to live independently) and some friends whose teenaged children are exhibiting the kinds of behaviour you are describing. They are having to come to terms with the idea that other people need to be involved in or even take over their DC's care. I know that your instincts will push you hard to avoid upsetting your DS at all costs but you need to be realistic.

You need respite and your DS needs to get used to being cared for in other places by other people. Eventually he will need to be cared for by other people full time and he needs that to have been an established part of his life for years before it becomes full time.

You need to find the right place for him while you are still able to monitor what care he is getting and make changes, including pulling him out altogether and starting again if that's what it takes.

Your DS also needs you to be healthy enough to make sure he's looked after.

What if he seriously injures one or both of you? You need to protect yourselves physically and emotionally for his sake as well as yours.

Being a good parent includes making sure our children are equipped to move on. For your DS that means doing different things from what most people do for their children but you still need to do them. They won't be easy. He will be angry with you but the alternative is to keep putting your physical and mental well being at risk until a crisis means he is taken suddenly into a care home not of your choosing without a chance to get used to being away from you and home. That isn't great for anyone.

Your other DCs also deserve to be able to spend time enjoying your company without feeling that they are putting you at risk by doing so.

You need to make respite happen now for the sake of all of your family.

[saintlyjimjams]

My son is 16, non verbal, severely autistic & physical when distressed. I agree being beaten up in public by someone larger than you is humiliating.

Does he have a social worker - SS will leave you do deal with everything if you let them - do do not be made yo feel guiltt for pushing for what you need.

Has he ever had overnight respite? You are right that you are getting older & if he does not have respite he needs to learn to live away from home. It can be hard to get part time overnight for adults but it does exist so push. I think you have to arrange it really and then tell him he's going - it sounds like the whole family needs the break.

Ds1 started on 1 night a week at 8, now has two nights a week & will probably increase to 3 nights at 18 if not before. I see it as training for full time suppprted living. From 18 young people can claim housing benefit & have their own flat & support workers - they need to be in their own place for 3 nights a week (also check out safe homes/houses - a scheme where housing benefit goes towards a part share in the property). That's a favoured model in my LA for adults with behaviour that can be challenging. But first stage is getting SS aware that you can't carry on.

Good luck - and yes know what you mean about no holidays.

[saintlyjimjams]

Sorry one night a week at 10 - he started day respite at 8.

[saintlyjimjams]

Oh and sorry need to be overnight in the flat for 3 nights a week for the purposes of housing benefit.

[WorriedMumNeedingHelp]

Thank you for all your replies. Some of your children sound very similar to my DS. He also rips his clothing so I am also forever replacing t shirts etc!

He does have a social worker but we don't find her very helpful. Currently DS receives funding for 3 days a week at a day centre for his social/life skills. This is a godsend for us as it's the only respite we have. We asked for funding for 5 days (2 additional days) but the social worker said it wasn't possible. Even those 2 days would have made a positive difference.

I spoke to DH last night about getting DS used to respite care but he's very reluctant. He thinks he is too young at 23 to go away overnight because mentally he is much younger. DS also gets extremely upset when it's mentioned. DH is not sure if the staff would be able to cope with his extreme behaviour and he doesn't think it will end well. I tried to discuss the future, what will happen when we're elderly and can't care for him but he ended the conversation. It is uncomfortable to discuss it, I know that. But it needs to be addressed.

I know it would be difficult anyway as our social worker seems so reluctant to secure more funding for us.

I know that we can't continue this way of living so I will continue to discuss it with DH. Thank you all for replying as sometimes I feel alone in this situation.

[Jackie0]

He needs to be living elsewhere, sorry .
So what happens if he doesn't agree ?
Can he be made to go?
I'm not sure about the legalities etc.
He will be fine in specialised accommodation despite what he thinks now and you and your family will have a life.

[saintlyjimjams]

It needs to be addressed. My son has no speech at all, is severely learning disabled & has extremely challenging behaviour when upset - and has a big support package (we had to fight for it). Overnights (two a week currently) are a godsend to the family & he likes going I get so cross when fathers (& it's always fathers) put the kibosh on respite. When you die (sorry to be blunt) your son will be in social care - imagine what a shock it will be for him if he loses his home & carers all at the same time. If he doesn't want to go now it's all the more reason to start now do you have a chance for a proper transition & to build up slowly.

why can't he have 5 days a week? SS always come out with this crap because they don't want to spend any money. Email the SW, copy to managers, councillors & MP - say you can't continue with such a paltry level of support (& surely those activities are for your son - not respite for you as such?) & your famy is close to breakdown. Ime if you don't copy in the MP your email will be ignored, if you copy him/her it will be replied to & dealt with. (Although you may have to cc them repeatedly - I now have my own file with the MP )

You sound at the end of your tether, your son sounds as if he is not learning the skills he needs to move into social care - and if he is showing distressed behaviour you need more support not less.

For comparison over this summer holiday my son will get 6 days a week in day respite & 2 overnights a week - largely because he has challenging behaviours. With that level of support we have found his anxiety reduces & behaviours decrease, and if they don't then we have enough support to be able to have him home 5 evenings/nights out of 7.

Get bolshy, do not let anyone make you feel guilty for asking for what you need - it is worth it. Ds1 having an appropriate care package for his needs has transformed our family life.

[Goldmandra]

At 23 your son has the right to still be in education. You can apply for an Education Health and Care needs assessment and have provision put in place for home to attend college five days a week.

Look on the IPSEA website for the model letter for requesting an assessment. Ignore anyone who says he won't qualify and appeal if an assessment is refused. Just having the assessment may get you access to more support and planning for the future.

Your DH may not have reacted positively but he might be thinking about what you've said and taking his time to face up to reality. Keep talking about it.

Sorry you're getting so little support

[WorriedMumNeedingHelp]

Thanks for the advice.

It was a fight to get him the 3 days a week at a specialist autistic centre. They were initially trying to put him into an unsuitable placement which wouldn't cater for his needs. He dislikes going to the day centre because he can't sit and play games all day there but it is good for his independence and social skills.

When we asked for 5 days, the social worker rejected it because he wasn't doing the full hours. (His hours are 9 - 4.30 but we were collecting him at 3.30 as he refused to stay until 4.30. He is now staying until 4.30 with no problems because we told him he had to.) They said they'd review it but we haven't heard anything and that was months ago.

I will write to ask again about 5 days and also about possible overnight stays. I'm not sure who/where would offer it though. DS said he's willing to stay one night to see if he likes it but he is volatile so he may have changed his mind by the time we get anywhere. Its difficult because even if we get this support, there's no guarantee he will agree to go without a meltdown. He had to leave full time education because of his behaviour and now attends a 1 morning a week SEN college course with the support of his day centre.

[Debs75]

The gaming is a big distraction for him. does he suffer with anxiety? ds does and we have found keeping him busy with colouring, jigsaws, and lego helps. he does sit in front of YouTube most if the day but for him it is a background thing.
we are currently looking at an options school. They are local but gave schools and adult services all through the country.
will he spend any nights away from home at all? overnight respite is hard to deal with at first. we were offered it at 6 but felt ds was too young and we only looked into it when I became pregnant with dc4 (ds 11) as we needed some space. he absolutely adores it and they are so accommodating and he is calmer there than anywhere, even home. up until easter we have always said we would keep ds at home forever, with some respite but over this last year we have had to admit we can't cope. these feelings take a long time to surface and your dh may not feel he is there yet. in our case dp felt like this way before I did.

saintly gives good advice re asking for help. knock on doors and shout from the rooftops, do not go away and make yourself heard. its tiring but with so little money around the people who demand the most will get what they need

[saintlyjimjams]

The right respite place will deal with meltdowns - if they can't it isn't the right place! Ds1's anxiety has been extremely high this year & his behaviour has deteriorated with it. Respite deal with it because that's their remit - and they deal with it well. On particularly bad weeks I'm pleased to hand him over for someone else to cope for 24 hours. They're also very responsive to him & take him out/change plans at short notice depending in his anxiety levels. It's real teamwork.

Do push SS - they don't act without a lot of pressure.