I have a dependent adult DS living at home. Struggling to manage the situation

[FirmNavyCat]

Hello. This will be quite a long post so I must apologise for that first. I have a 26 year old DS who lives at home with me. He has a diagnosis of Aspergers (now known in the medical community as autism spectrum disorder), which he received when he was 18. There were signs that something wasn't right going back to when he was a child, although no one involved with DS at the time seemed to suspect autism as a possibility. I didn't know what autism or Aspergers was at the time, and I don't think there was as much awareness of it compared to now. I will try to describe what his current state of mind appears to be and what his daily routine is. He has a number of issues relating to social interaction, and some sensory issues which are centered around sensitivity to smells and bright lights. He has to have the blinds or curtains closed when he's in a room because he hates sunlight. He gets agitated by what most people would consider to be normal household smells. He very rarely leaves the house and will only go to places that are within walking distance. He doesn't drive and won't use public transport. He will only go to shops that have automated self-service checkouts because he doesn't like talking to employees at the regular checkouts. He also hasn't been to a hairdresser (barbershop) for a haircut since he was a child. I have to cut his hair for him. I don't like doing it and he doesn't like me doing it. He has said if I didn't do it he would just shave it off. He won't go to a hairdresser to get a haircut because he does not like having social interaction with people he doesn't know. I would say there are a number of unwritten rules of social interaction that neurotypical people just seem to inherently know, but he doesn't. These include knowing when it's his turn to speak and knowing when other people have finished talking, how close to stand to someone when talking to them, and just generally knowing how to talk to people without seeming awkward. Unfortunately he struggles in each of those areas.

He doesn’t work and has never actually had a job. He is usually up all night playing games and sleeps during the day. He has paid lip service to the idea of finding a job, but does not seem to have any plan regarding entering the world of work. I can't force anyone to give him a job, but he's shown no ability to get one of his own volition. He has no specific work-related qualifications or experience. To get a job you need some combination of qualifications, experience and references. He has none of those, but you need at least two of them to have any chance of getting a job. Ideally you need all three. That includes minimum-wage jobs. That's how it is in the UK, and I assume it's also the case in most other first-world countries. He also has no friends or acquaintances, and has virtually no interaction with anyone except me for months at a time. Other family members have essentially forgotten that DS exists. No one ever asks about him or what he’s doing. They stopped asking a while ago. He does not get invited to social events like weddings and parties. He has also never had a girlfriend. I can’t imagine any woman giving him the time of day because of the way he is. I unfortunately have no other children and I have reluctantly accepted that I will never have any grandchildren. If he somehow obtained a job that requires teamwork and communication with the people you're working alongside, as a lot of jobs do, I honestly think he would end up getting sacked or quitting on the first day. It wouldn't surprise me at all.

On a practical level, it's difficult having two adults in a house where only one is earning any money. He doesn't claim any benefits and has no other income source, so I'm having to prop him up financially. I have not been able to have a holiday for over 10 years as I don't think DS would cope at home on his own for a prolonged period. He can do the bare basics like getting washed and dressed and preparing food for himself, but if there is a problem that he can't sort out himself, then he will just capitulate. When events happen unexpectedly or there is a sudden change of plans, which most people just take in their stride and deal with, he can't manage. I believe most people have coping mechanisms when they are in difficult or challenging situations, but unfortunately he doesn't. That's been an issue since he was a kid. If there was a problem with something in the house - for example if the fridge or the boiler wasn't working, or there was a power cut - he would just be a headless chicken and wouldn't be able to cope. I have tried to convince myself that it could be worse and that I should just accept the situation for what it is. I tell myself that if he was going out getting into trouble with police, doing drugs etc, it could be a lot worse. I know deep down that just because things could be worse doesn't mean it's fine and normal for a 26-year-old to be unoccupied 24 hours a day, and having basically no interaction with anyone in the real world.

The situation has been ongoing for several years now. I don't want to throw him out but I am finding the situation increasingly difficult to maintain. I love him very much but I really need a break. It would be nice to have a holiday for a week and not have to worry about him the whole time. Unfortunately that's what I would be doing if I went on a holiday. I also worry quite a lot about what will happen to him after I pass away. I am in my late 50s. In the cold light of day, I know I'm closer to the end of my life than the beginning. If you have managed to read all that, do you have any opinions or advice for me?

My 80 year old Dad never found an answer so my 46 year old brother is still in his teenage bedroom gaming the night away.

First things first- he needs to apply for benefits to ease the financial situation.

Secondly, as someone with Asperger’s (diagnosed 90s), I know only too well the social interaction issues. I learnt from watching and mirroring how people interacted. I’d write scripts to try and recognise how I might respond to questions from others. Can he go out with you to places like the supermarket and just observe? Don’t put any expectations on him other than to follow you around and watch how people interact, particularly at the checkout.
It’s going to be baby steps, but once he starts mastering one thing, he’ll find he gains understanding and confidence in the next thing.

I’d also see if you could take him to public places where he can sit somewhere quietly and observe people’s interactions. Also, can you take him on a bus or train journey, the same route several times, and then his goal is to do the same journey alone? By then, he will know exactly what to say to buy his ticket.

Its exposure to situations, a lot of watching and learning and then taking small steps to put yourself in these situations that I personally found helped me.

Make this the focus for the next few months before you tackle the work issue (hence why you need to see if he can get benefits in the mean time) as he will struggle in a workplace unless he has these basic interactions mastered.

I get this. My brother is in a similar position- can’t work but also doesn’t really fall into the category of being so severe he qualifies for (or would even accept) any help.

Just jumping in.

I was like this and couldn't hold down a job and was on anti-psychotics too.

I actually found the anti-psychotics made me worse. I think because the problem was Autism and sensory issues all along. The medication numbed my brain, and that actually hampered me being able to process or rationalise. I find with my Autism I need a lot of brain power to navigate social situations, I need to rationalise and take longer to process. So to dim my brain a bit made that impossible so anxiety and emotional reactions and overwhelm became really bad.

I had support workers and didn't find i could learn to manage until I lived independently and had support workers help me initially with learning and navigating independence and building confidence.

I work full time now, have done for years, but the main thing that made it work was my employer. They were supportive and flexible and had more trust in me then I had in myself. I started working from home and started on a few hours a week and built up over time. They then put me through qualifications and training through work.

So I would maybe ask your council for a needs assesment and see if you can get a support worker who can work with you to target your struggles. They can also look over time at your pace getting you into supported accommodation? Even low support. Then when your ready to start a bit of work, always look forward disability confident employers.

Similar suggestion for you OP. Without changes this will just drag on for years. I would honestly call the council and set up a needs assessment. Even if your son refuses, they can do a carers one for you, so you can access support or assistance, even respite.
There are low level supported accommodation, where the ongoing responsibility will be passed onto the adult social care teams and they can get the right support in place to hopefully get your son out his shell. My parents I know felt guilty many many years ago when they took the plunge and got me out of the home. But it was honestly the making of me our relationship is so much better now. In the thick of it and when it's your family, there is a blind spot there, where mixing a role of mother into carer and social worker for an adult creates a disharmonious relationship.

I think this is such good advice.

I think this post raises important points.

I would just add that part of a person-centred Adult Social Care Assessment is looking at the impact of a person's needs on their wellbeing. For some people with autism, leading a relatively isolated existence may be aligned with their preferences and not impact their wellbeing negatively. For others, that same level of isolation might lead to significant distress. The assessment is designed to explore these differences.

I agree with everyone else and say benefits and pip

As I was reading your post all I was thinking was this sounds much more high sensory/needs than Asperger’s .

Maybe someone here knows an asd charity that can help you and your son with long term planning. It’s better for him if he starts the path of assisted living now gradually rather than have to deal with assisted living and a lost parent if you were to pass ( grim but reality) Like Colin Farrell is doing with his son.

All the best it sounds exhausting

.

there are 'autistic friendly' employers in the UK and the National Autistic Society should be able to help you. For employers Scroll further down and there's a facebook link for employment options. Has DS got a CV together? A note of his strengths - maybe good concentration, attention to detail?

My DD aged 18 just finished A levels (also higher functioning ASD) and fortunately found a part time job that's excellent for her - she collects mailed parcels for an online book store to take to their office locally. She doesn't need much interaction with anybody, and can keep her headphones on!. It's ad hoc work, but pays for her to socialise with the group of close friends that she has.

You might be able to claim benefits, as other posters have said too.

Good luck

I am experiencing this but DS is a few years younger. He was going to go to university but couldn’t cope after a couple of weeks. He is very depressed a lot of the time and it is like walking on eggshells.

The mental health nurse at the GP surgery is involved and I made myself an appointment there recently. Felt a bit of a fraud at the start but then burst into tears twice and realised I did need to talk about it.

Outcome was she said he needs to claim PIP and universal credit and suggested CAB and Job Centre for help filling in forms. I said I was worried about how the job centre would be but she said don’t be and they can be very helpful.

He is taking an interest in cooking and so I am encouraging that for now and we have a routine where whatever his sleep pattern he will come down and watch TV with DH and I in the evening. To link in with his interest in cooking I’m growing vegetables and hoping to get him a little involved in that to get him outside. Hasn’t worked particularly well so far with total involvement being getting him to plant chilli seeds but planning to do a herb garden and am hoping to get him to come herb plant shopping.

I am also hoping in time to get him to do some voluntary work, was thinking maybe something with animals as he loves them. I’ve set myself a mental target of 3 years time to have him functioning a little more independently. Lots of talking about hoping I notice as I read this back. First start is the finances to take the pressure off a bit.

I have made small progress with DS1 over the last couple of years. Ironically it has been due to visiting a private dog field where zero social contact is guaranteed. Prior to that 100% of the time I got him out of the house led to social contact - GP, dentist, hospital etc. It’s taken years but he is now comfortable leaving the house in the car (without getting sick) to go the the dog field, doesn’t cower in the back seat in case he is seen and can even tolerate me stopping off at the shop on the way home.

The low demand means he is not permanently stressed or suicidal but I don’t see how this translates to work which means being in a social environment even if not interacting.

I have plans for increasing skills of independent living in his own home when I’m no longer around but this does not extend to work or supported living. The costs seem to outweigh the benefits in terms of social interaction required. He wouldn’t qualify for supported living and would reject it if he did. Same for supported work. You could say he is fiercely independent (apart from his reliance on me). I don’t think he will ever accept support from paid employees ever again (blame support workers he’s had in the past). I don’t know what else I can do other than give him skills and means to cope when I’m no longer around.

Hi,

I don't have any personal experience in this but I do teach students with ASD.

First you need to help him claim PIP.

Then he needs to learn some life skills.

It may seem odd but role playing and scripts can be really helpful for individuals who cannot work out the social side of situations.

Create a folder with emergency plans in. You won't be around forever; he needs to learn these for both of you.

Example;

If there is a power cut.

1. Use phone and click torch or grab torch from xx place in kitchen.

2. got to power box and open it. Are all the switches down? If only one or two are down flick them up.

3. look pit window; are other houses in the dark?

Or:

Someone is at the door and you are alone.

1. go to door and shout who is it?

2. if you know them and they are your family/friend open the door

If not say

"No thank you not today" then walk away.

A script will help him manage step by step situations. And will give you freedom

I would tackle the gaming/being up all night and sleeping through the day first. Switch off the Internet or disable his system at night. Then start setting small tasks for him to achieve such as walking round the block or helping round the house.

Sending much empathy xx I have similar age ds with ASD and it could be me writing this - I’m riddled with anxiety, as to what will eventually become of him, as he’s stagnant which breaks my heart too. He must claim UC with your support xx

Is his dad on the scene to help you?

That must be so frustrating, but for me, a grown man has been allowed to fester for years with no responsibilities and has hardly learned a single life skill. I feel for him when he eventually has to attempt to cope on his own, because he won't know the first thing to do, despite his mother's vain attempts to instil some kind of set of rudimentary life skills.

Edited for grammar.

Please become his legal appointee and claim benefits for him, he is missing out on so much financial support that would help you both. He won't have to claim you can do it for him.
Then when you have done that you can look at getting him some help, or slowly changing things.

And also depends on the family...some parents don't want sending their offspring to shared accommodations and useless interviews when the children will inherit money and property. You are going to be surprised how many people manage

In fact I had a job in France being the companion of an adult autistic lady in her 20s. She loved horses and that was her day. She understood everything and as I'm quite introverted and think west I'm saying , it worked well for us

She didn't have any GP visits or etc. Not sure is there such thing as adult social services in France.

I think because you will likely die and he will be left alone you need to work on getting him to be able to do things for himself. I would not tolerate that he's in bed all day that's for sure. You need to get tougher.

My 18yo has some striking similarities to your DS but he has been through CAMHS and been diagnosed with ASD and also claims Adult Disability Payment. Has since he was 16.

That's the first thing your DS needs you to support him with - help him with claiming Disability benefits that he is entitled to.

Once that's done it will open up other supports for him. You should be claiming Carer's Allowance yourself as you are his carer on a daily basis.

Please contact your local Carer's Centre and get yourself an Adult Carer's Support Plan put in place. It is a legal document and will help get support you need including respite breaks.