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.

@MargoLivebetter - that sounds like progress. A short holiday is an excellent idea.

I hope your son finds success with an apprenticeship. I saw a careers counsellor with my younger son yesterday (also autistic) and the counsellor recommended voluntary work to gain an edge when applying for apprenticeships.

@doyouwanticewiththat - yes, Amaze do help with over-18s. Their advice line is really helpful, as are their online video presentations. They also offer in-person group meet-ups.

There's also Aspens in this area, but they're not free. We paid for online support from them for my son. They do have some services which can be funded by the NHS, but the criteria for acceptance is very high (I know because they wouldn't accept my son, even though he is unable to live independently, suffers severe anxiety and OCD and rarely leaves the house 😕).

Place marking so I can read later. Adult DD going through various issues is ADHD/ASD.

A follow up question. DS is very reluctant to tell employers that he is Autistic. I understand this but think it is possibly a mistake. What do your adult children do?

@MargoLivebetter - sorry you didn't get any answers to your last question. I think it depends entirely on the individual and how many adjustments he or she may need. My oldest son would have to declare his autism because he'd need adjustments made for him. The advantage of disclosing it to the employer is that they have to make any necessary allowances.

I'm pretty sure DS won't have told his employer even though I've told him to declare it in the past. DS has always been in denial about his diagnosis - he doesn't seem to think he has any problems, it's everyone else who is difficult!

It’s so nice to find this thread! Not that you are struggling too just that I’m not alone. My autistic DS is 27 now and still living with us, he got a good degree and was working in a graduate job (IT) when the pandemic hit, after 2 years WFH he struggled to leave the house and has now been off sick for over a year and barely speaks to me.
He’s on medication and is having counselling, he goes for walks and is trying the odd bus journey as part of his CBT.
I just struggle to connect with him, he barely speaks to me so I can’t get him to open up at all.

I also have an autistic DD and she’s 20. She’s at college and I guess finally doing ok but needs a lot of support and is prone to bouts of depression when she takes pills. We had to home school her from year 8/9 as she wouldn’t speak and her anxiety was off the scale. She gets PIP which has given her some independence and helped her a lot.

I have 2 other NT dds (I think) and one who is probably autistic but I doubt she’d get a diagnosis because she functions very well.

It’s a lot.

Im going to look on that website for a counsellor as DS’s finishes next week and I have no idea what he’ll do then.

Just to say hello @UmmOfUmbridge . It can all feel a lot sometimes. It is good to find fellow Mum's of adult children with autism and know that you are not alone going quietly bonkers from the worry of them and their futures.

I'm laughing at your post @ohtowinthelottery as my DS thinks the same. It is everyone else who is so terribly difficult, irrational and mostly stupid!!!! 🙄

Since my first post, I have backed off a bit to save myself. DS is actually capable when he wants to be and I think I am disempowering him by endlessly providing job options and helping so much. I've said to him that I'm there to help if he asks me. He has to take some initiative himself. I think this is going to be a long, slow & painful process for him. I was losing sleep and my well-being by my endless worrying and desire for him to step up and sort himself out. I've reconciled myself to him living at home for a good while longer and he can take the time he needs to get himself together. He has found a seasonal job to bring in some money for the short term and he knows I'm not funding any more than food.

I'm not sure that is the right approach but I am sleeping again at night.

OMG!! I can't tell you how happy I am to have found this thread - again like @UmmOfUmbridge just because it makes me feel less alone.

My DS is 22 and was only positively assessed as ASD 6 months ago, though I have suspected that he was since about the age of 15/16 (puberty basically). Things have been really difficult the last few years and Covid was the trigger for him getting an assessment. He had just finished A-levels and was on a gap year when lockdown happened. He had already decided that he didn't want to go to Uni and he was hoping to do a degree apprenticeship. What happened subsequently was that lockdown sent him into his shell and he has never come out of it. He was just about coping (masking) all through school and I think if Covid hadn't happened he may have struggled along. He has since lost all his social skills and confidence, as well as any motivation or incentive to progress. He wants a to earn money but I don't think he actually wants to work. He considers any further education or voluntary experience "a waste of time". He's been on and off UC a couple of times and each time he hits a bit of an issue (like a challenging conversation) he just puts his fingers in his ears (metaphorically) and closes his eyes until the problem goes away . He has never had a job and has zero work experience (outside of the obligatory couple of weeks they do at school) but continues to send his school-leaver CV out applying for all types of jobs, getting nowhere. I can't discuss anything with him as he will only enter into a discussion on his terms and if it's of interest to him. And of course nothing I suggest is of value, it has to be his idea.
For further information (and so as not to drip-feed), it's been just the two of us since he was 4 and he's had no contact (his decision) with his father since he was 10. We also have no other family in the UK.
My main concern is if something happens to me he isn't ready or able to live independently. I do have family abroad who would step up as much as they could if something happened to me, but all of my family members left our country of birth, and have naturalised in the countries that we've landed in. None of us can live in each other's countries. If something happened to me my DS would effectively be on his own. And he would definitely not connect with his father who he considers a stranger.
Other than working towards ensuring he can have some financial security in the event of my death, I am at a loss as to how to help him become a functioning member of society.
Ps if you've read this far, sorry, I know it's long and there isn't really a question in it, but it's good to vent.
Pps. I am speaking to a counsellor to support me - but obviously she can't offer solutions.

I'm so happy I found this thread. Other people in the same boat! I have a 21 year old ds who is just going through the lcwra assessment right now - phone interview in a couple of weeks so I'm hoping they give it to him as he's just really not able to hold down any kind of job any

Hello! I can also relate to everything in this thread, though my DS is 17 this is where we are headed.
I am so relieved that I’m not alone in how I’m feeling.
It sounds like we are all on very slow journeys of recovery (whatever that actually means for our ASD offspring) following the pandemic which basically turned my son into a recluse.

Has anyone come across any type of counselling where the parent can be the one getting the counselling in order for you to then help your child/adult child? My DS also doesn’t think he has any issues, it’s other people with the problem in his eyes, so he’s unaccepting of any attempt at an intervention and I’m no expert so I don’t know how to help him. Some sort of professional mentor for me would be so helpful but I can’t find one.

My son made an attempt on his own life last year which left me reeling tbh. Even after that it's hard to get mental health support for him beyond the immediate crisis management. He's high functioning enough to not qualify for any practical support re housing although he has gone through a comprehensive social care assessment and meets the criteria for that so they are at least putting things in place from a social care perspective but it's brutal, draining and pretty soul destroying I'm not going to lie!

Just marking so I can follow this, I’m sorry to hear about how hard everyone is finding this. Have to agree though that lockdown has a lot to answer for, I think DD (16) would have been in a very different place but for lockdown. Taking the external pressures off her helps her cope but doesn’t help her stand on her own two feet, and I really worry about her ability to cope as an adult but am struggling with pushing but not so hard she crumbles.

Yes this is it exactly for us. I wish I had a crystal ball so that I could judge how hard to push and how gently to support

So sorry to hear this

My ds is 21 and tried uni for about a month but didn't manage it so is now on UC and looking for work but he feels a lot of pressure as knows he's meant to work etc but finds it a real struggle interacting out in the world. He had a year out of education after school as was completely burnt out. I'm just grateful that hes alive and happy atm as he was in a very dark place after school.

i think young adults with asd need more support to work...

I’m sorry to hear off so many other asd youngsters still struggling without support. My asd ds is retaking 1st Year off uni as he struggled last year but is still struggling this year. His Self medication is definitely not helping and I’m now so drained by it all, that I don’t have the strength to support him and am so frustrated as we go round in circles with it all. I suspect he won’t get through uni but god knows what he’ll do instead…

I’m going to look at the counselling options now. So pleased to have found others who understand how tricky it is.

Hi.
I am struggling too.
I have a son who was diagnosed with Asperger syndrome age 8. He's now 32. I know AS is no longer a diagnosis.
He's an absolute gem and gives me no bother.
He's very intelligent but cannot manage basics.
He would not be able to work without significant support.

I have a second son with a learning disability.
He is currently working but I find him so draining.
I think he's probably mentally about 12 even though he's almost 30.

Some days after a long day at work they take it in turns to talk at me.

It's so draining and I suppose it's just hit me this will always be my life.
I will never have anything for me.
I have no support. I'm on my own with them.

Sorry for everyone else struggling.

Sorry for such a depressing post.

I think the worst thing for me was always thinking they would eventually mature albeit slower than others.

Now it seems they are just stuck and there's no more improvement to be had.

Sending you a big virtual hug. That sounds so sad.

I haven't unfortunately

As a stop gap, could he get a repetitive low demand job that doesn't require a lot of decisions? Something to get him into a routine and out of the house? Then he could cut down weed and alcohol and try for a job more suited to his degree once his confidence is up?

My son is 33 and left home nearly a year ago to live in a shared flat. Out relationship was at rock bottom at the time. He had been living at home since he left University . Most of that time unemployed. He is on the spectrum and struggles with so many things. In many ways he’s made huge strides forwards, but he is lonely and isolated, not eating properly and we are very distant. He will leave it to the last minute to commit to coming to see us, cancel things constantly and is often rude and unkind to me. He used to adore me. Several years ago he started seeing a therapist, since then he sees me as the source of most of his problems which is heartbreaking.
Im really worried about him at the moment as he’s fixated on body image and doesn’t eat properly. He’s been feeling very unwell for weeks and has accrued a long stint of holiday time off so is just on his own all day feeling unwell. I’m sick of asking him if he wants to come over. He just prevaricates constantly. I just feel despair about the whole situation . I dread seeing him these days but also worry about him all the time.

I feel for you @PassifloraEvangelist - tbh this is the future I envisage for my son and just like you I think he holds me responsible for all his ills in spite of us being so close when he was young. It's very sad

My son is 27 and struggling to find a job. My husband who I think is a very high functioning autistic with a good career, never been unemployed , not diagnosed, thinks he should get a move on and just get a job and think about moving out. My son has a very selfish persona, seems to only think about himself and does the bare minimum to help out. To me my son is on the spectrum, but my husband does not see it. I also have 2 severely autistic young adult children whose behaviour is manageable. I really worry about my son as he would not be eligible for any help as he does talk with people and manages himself, not severe enough.
He doesn't have the communication skills that employers expect. Lazy and unmotivated is how he comes across.