Adult son with autism - struggling with life

[MargoLivebetter]

It's been a while since I posted but I could do with some MN wisdom or thoughts.

DS is 24 and back at home after graduating two summers ago. He was diagnosed with Autism when he was 7 and back then it was described as "High functioning". I know that all the definitions have changed but basically on a superficial level DS can cope with every day life. He can interact in a fairly neurotypical way for short periods of time, sufficiently so that on first meeting him you wouldn't necessarily know he was Autistic. If you spent more than 30 minutes with him, you probably would.

Behind the scenes, so to speak, he struggles with anxiety, decision making, executive functions and basically cannot cope with more than one issue at a time. He is severely dyslexic and has a long list of specific learning difficulties, all of which mean that he finds the day to day admin stuff of life really challenging.

He is bright and got a good degree and had all sorts of plans about going travelling. He was going to do some temporary jobs and go travelling, but that is getting kicked down the line and he got very down and depressed doing a grueling seasonal job working really long hours in customer facing roles that he struggles with. He has got himself another "temporary" job doing bar work and the travel plans are again kicked down the road. We are now talking or February next year.

He also has a complicated gastric issue, that has been diagnosed but that he is very bad at taking the medication for. He gives me reasons why he doesn't like it and prefers to self-medicate with weed. He has discussed this with his consultant and has a medical dispensation card for this. He also self-medicates by drinking too much. He drinks pretty much every day. I think he uses both to calm the constant stress and anxiety he feels. I hate both, the alcohol almost more than the weed.

Is there any help out there for autistic adults? I know my own anxieties for his future are an issue here too. I think it would be helpful if he could talk to a careers advisor for autistic people or a counsellor who could understand some of his autistic problems, who isn't me. I'm worried that I'm becoming more of a hindrance than help and I'm starting to worry myself into a ball of stress about him and that isn't good for either of us.

Sorry that you didn't get a useful reply yet. This won't be one sadly!

Our DD (ASD diagnosis 3 years after severe mental health breakdown Year 9) didn't attend school get any GCSEs despite being bright. She couldn't manage school. Tried college but it also didn't work out.
We have now started a UC claim. She gets PIP. She can't manage her appointments and the interactions online and has already missed her first appointment which to be fair they rearranged but I didn't know. I have tried to ask if I can somehow act as her appointee but they are so far ignoring me.
She won't manage a job at the moment - she just won't - maybe one day. I am exhausted thinking about how I might make them understand that and accept it. I am so tired of all the fighting we have had to do all these years. Our biggest challenge has been keeping her alive. But here we go again with another system which will likely be stacked against us.
Not helpful for you. But I share your concerns and questions. I too would like to know who now can help us now she is an adult.

No advice really, just wanted you to know you are not alone, our ASD adult children struggle with life, and don't work. One is really struggling and I am their legal appointee, so I can deal with benefit claims etc.
I find when their mental health is low it helps to reduce demands and pressure, and encourage any soothing hobbies they may have.
We have lots of ups and downs, as it's hard for them in a world geared towards Neurotypicals.

Thank you @Greaterwaterparsnip and @VeryDiscombobulated . I'm sorry to hear that you are struggling and worried about your adult children too. It is exhausting.

It sounds as if your son doesn't really want to travel. Maybe it was just a convenient thing to say instead of admitting he didn't know what to do next.

He's doing well that he's gained a degree and is working 🙂. I know it's temporary work, but it shows he has the motivation to get up and go to work every day. But I understand that it must be draining for him. And, as his mum, you can see his vulnerability more than others.

I also have an autistic 24-year-old son. He can't work and is on Universal Benefit. We have accessed advice before from a local autism charity called Amaze (Brighton) that provides careers counselling. Might there be something similar in your area? The National Autistic Society might be able to advise.

And Scope provide help for disabled people seeking employment:

www.scope.org.uk/employment-services/support-to-work-extra/?gad=1&gclid=CjwKCAjw1t2pBhAFEiwA_-A-NMpj07sATHSZ2r0PS9k-M_1yLyjGcuK_0pYcjAG5ir_lV5Zqg7-8kBoCMrEQAvD_BwE

In general, though, I don't think there is enough support for autistic young people. 💐

My DS is also early 20s, had severe burnout at sixth form. He gets pip (I am his appointee for pip, and that transferred very easily across to be his appointee for UC too) and LCWRA. He has had an adult social care assessment and gets a small amount of PA time each week. He is happy living a very limited life and I am trying to get him involved in autism-friendly groups - thinks like D and D - in our local town. He wouldn't hold down a job yet but maybe in future. Maturity wise he's more like a 14 or 15 year old though his intellectual grasp on things like nuclear physics is incredible. I don't know what happens next but I think he'll be living here a long time.

Placemarking for replies.
OP my DS is 19 & is just dropping out of Uni. I fear for his future. There is very little help for teenagers & even less for adults. The benefits system is a disgrace too. I'm regularly asked when Ds (&Dd) will 'grow out of it'.

One of my dc who doesn’t particularly like customer facing roles got a gap year job working overnight as a stock replenisher/.com shopper.
He worked 3 overnights a week, but got good money for it and it kind of worked with his sleeping pattern! I think some stores have similar roles during the day, too.

I know it wouldn’t solve the overall situation, but could your ds consider trying this as a stop gap while he thinks about his way forward? If he struggles with interaction, it would be far less stressful than bar work, and might lessen his anxiety?

Thank you @Maluki , @Rarewaxwing and @medianewbie . On the one hand I'm appreciative of all that DS can manage but I know it takes such a toll on him.

My partner, who is a lovely man and infinitely more understanding than ex-H, DS's own father, doesn't get it at all and just thinks that DS behaves like an obnoxious arse, when he is in his more autistic moments. God love him, he bites his tongue and doesn't say anything but I can feel him wincing.

I would also say that DS is very emotionally immature. I think he is functioning somewhere around the average 16/17 year old boy, rather than a 24 year old man at the moment. However, DS is not happy at all. He is miserable and angry.

I so desperately want DS to be able to be his own best friend, rather than his own worst enemy, which is where I feel we are at the moment.

I've had a look on the National Autistic Society website and found a counsellor near us who has experience of counselling people with Autism. I think I am going to contact her. Have any of you every used a counsellor at all?

Thank you @watcherintherye . He's tried to get warehouse jobs but we live in a tourist area and they are few and far between. Interesting that you mentioned about the sleep patterns, as DS's sleep patterns are all over the shop. He tried melatonin but it didn't agree with him, so abandoned that.

Will the universal credit people try to make her apply for jobs? What happens when she won't?
I had to get her signed off by the GP. I guess there will be rules but the sick note was only for 3 months. I can guarantee the ASD will still be there in 3 months...🤷

I'm so pleased you've found a possible helper via the NAS website, @MargoLivebetter. That sounds like a very good idea.

My son has seen two counsellors. They both provided online sessions, which he found much more manageable than face-to-face sessions.

One was from an autism charity near us, so she was very aware of how autism was likely affecting his life. She made a big difference to him, although I only realised this in retrospect because the changes were slow. But she got him out of his bedroom, interacting with family and going outside again.

The other worked with him on his OCD. This didn't help the OCD, unfortunately, but he said she was good for him and he valued his time with her.

That's good to hear @Rarewaxwing . Really encouraging, thank you.

Ah, ok. Although ds didn’t work in a warehouse, it was actually in one of the big supermarkets. Maybe log in to the ‘working for us’ etc. pages on the websites of the likes of Tesco/Waitrose etc? Just struck me bar work probably not good for his drinking, either.
Has your ds tried learning to drive? If he takes to it, could be a boost to his self-confidence, also might keep the weed and drinking in check? Obviously couldn’t have a driving lesson high or over the limit! Appreciate only you will know whether any suggestions will work for him. It’s not easy.

@watcherintherye he just passed his driving test. He had to do it in my car, as we couldn't get a test in the next 100 years in our own area and it was too far for his instructor to go. That was a fun experience for us all (not)! However, he has done it now and actually scares me less than neurotypical DD when he drives! 😁

My DS is a couple of years older than yours and also did Uni and returned home. He doesn't currently have the list of issues your DS has - although he's not the easiest to live with and can be quite impulsive and take risks which is always a worry.
DS has worked in a warehouse but has also done evening shelf stacking in a supermarket - started as a Christmas job. You say there's no warehouses near you but there must be supermarkets.
DS has found a FT office job - which is something I'd never have expected as his organisational skills have never been great IMO - but I'm under no illusion that the wheels could all come off at some point.
Good luck with the National Autistic Society appointment.
Is it possible that your LA have a scheme which helps people with a disability find employment. I know ours does but not sure of the criteria to access it.

Just realised I didn't say in my pp that my DS was also diagnosed with ASD at the age of 7.

Thank you @ohtowinthelottery . If you don't mind me asking how much help do you provide with job applications and general life admin for your DS?

@MargoLivebetter Initially we had to help with job applications. DS did a year at Uni then dropped out at end of year 1 saying he no longer wanted to do that course. This happened 2 weeks before the start of Yr 2. We let him take a year off on condition that he got a job. He had a total meltdown over trying to put together a CV as he said he'd got nothing to put on it! Thankfully, with 2 lots of work experience under his belt plus voluntary work from his bronze DofE and a little bit of voluntary work with a charity, we were able to help him construct something meaningful. The next hurdle was the "there's no suitable jobs advertised" attitude. Sadly DS's idea of a suitable job was very different to ours. We very much have the opinion that no job is beneath you and once you've got a job it's easier to get another. After a few days of DS claiming there were no jobs on the job sites, I had a look and forwarded some to him and told him to apply. He actually seemed to manage the applications by himself, which is good because some of them are online tests. These were retail jobs.
He then went back to Uni after a year - complete change of direction (sciences to humanities) and managed to come out of the other end with a good degree followed by a Masters. All subsequent job seeking and applications he's managed by himself. DH has looked over his applications and gone over interview questions but on the whole he's done it himself. His current job is not linked to his degree and is a fairly junior office job but he seems happy and not stressed - which is a big plus!
Life admin he can sort out but he does need prompting as everything is always mañana with DS - not necessarily the best idea when getting car insurance quotes or buying long distance train tickets! We've always made him do his own paperwork even if we've had to stand over him and advise - but he's often not willing to listen to our advice! He's like a stroppy teenager except he's 26!

Thanks @ohtowinthelottery . Our DS's sound not dissimilar! I've done a lot of "active supporting" recently and I think I'm a bit weary. I stupidly thought that having been to Uni, he'd be able to manage life a bit more than he seems to be able to.

@MargoLivebetter I know what you mean. Our next hurdle is getting him to move out. He wants to buy rather than rent (which makes sense) but as a single person on a relatively low income it's going to take a while to save up a very large deposit.

Hi , I'm not sure I can offer much in the way of ideas as I am struggling with my own DD 19, who has just dropped out of college , diagnosed with ASC age 14 after a long wait in local services . I feel like I have spent the last 11 years fighting constantly to be heard on her behalf , advocating . It is incredibly difficult . Maybe I can offer support.

I wonder if you would find the Sarah Hendrix website helpful, I'll try find a link . She is an expert who specialises in counselling autistic men I think. I'll find out more .

@Rarewaxwing I'm same area ish, do amaze help with over 18s? There used to be Assert, but I think they lost their funding ..also locally in East Sussex there is the Recovery college for people over 18 who can offer support for mental health for free .
Luckily I have managed to get DD on list for autistic mentor, and she has counselling .
@MargoLivebetter I share your anxieties . We have to help DD with most areas of her life, including managing friendships, banking , applications for jobs, emails , everything . We have just applied for pip for her .

My other DD had a case manager for her UC , before she started uni where she went along every 3 months , and had a chat about continuing problems . She was never asked to provide evidence after showing initial documentation.

@Greaterwaterparsnip you can act as appointee but your DC will have to sign a letter to say they want you as appointee and give permission for you to act on their behalf , which is sent to pip address .

Me again sorry !

www.asperger-training.com/coaching-and-mentoring

Thank you @doyouwanticewiththat I'm making progress with DS and I think Canada is not happening or if it does, it will just be a holiday. We are now looking a apprenticeships.

I will have a look at the coaching & mentoring website too.

Really appreciate everyone's input.