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.

We all sound like we have a lot in common. It’s reassuring to me that I’m not alone. I hope you all feel the same. It’s so hard.
How is everyone doing?

@Gem2006 - it's a difficult path, isn't it? And I feel that there are no easy fixes.

I hope you're OK. I know how hard it is.

We've had good times with my son (usually when he's had good support, which says a lot), but he's been struggling for years now. Like your son, he spends a lot of time in his room. I'm working on getting him proper help for his OCD and hope that will lead to a better life for him.

He started a course at college, but couldn't cope and is now on long-term disability benefit. I tried so hard to avoid this outcome.

The main thing is to just keep trying everything you can think of to help. The best thing I did recently was to make an official complaint to PALS about my son's poor care. Suddenly, we seem to be getting more efficient responses and quicker appointments. So I'm hoping this is the year things will change for the better.

@Rarewaxwing that sounds stressful. But sounds like you are doing everything you possibly can.
My mum said something interesting the other day which helped me to relax, she said would it be so bad if he ends up on long term disability as long as he’s happy and enjoys his life that’s the main thing. And I think she has a point because if my son can’t cope being squeezed into modern society then I think I’d prefer he was on benefits and happy than struggling in a job that made him mentally unwell.
But I totally get where you’re coming from, it’s an outcome I’m trying to avoid (but I feel less scared about it now I’ve reflected).
It’s all about the happiness at the end of the day. Are they happy…
still I lie awake every night for hours ruminating and crying and researching autism til my brain is frazzled!

I haven't read all the responses but just wanted to give you a positive story. DS got an adult diagnosis of ASD/AD(H)D - at 18 but still adult. He dropped out of uni because the learning style just did not suit him at all. After some time I insisted that he apply for UC - partly so he had some money and partly because I knew he would HAVE to leave the house and go to appointments with them. I gave him as much support as I could - lifts to meetings, sitting in on phone calls (with their knowledge) etc. They were brilliant with him - really understanding. Long story short - they got him a job with a local employer doing website admin. He works from home (he HATES people and offices and all that) and is doing well.

I know that not all 'Job Centres' will be as good but would encourage your DS to try yours. I should say that I always encouraged DS to be open about his autism - it is classed as a disability and I am sure that he got better support as a result.

@Gem2006 - yes, your mum makes a good point. But it should be a good, fulfilled life with opportunities and the right support in place. My son isn't happy, so that makes me unhappy. I've watched him gradually lose hope over the past few years and it's awful to see. I tell him this is the year things will change for the better and he'll finally get help for his OCD, but I can see he doesn't believe me.

I doubt that my son will ever be able to manage a full-time job. However, I would like him to have a life outside the house - maybe doing some voluntary work, doing courses and being able to go out independently. If he could overcome his anxiety and OCD, that would be a dream come true.

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@alterego2 - thank you for sharing your positive story. That gives me hope. It's not the first time I've heard about people at the Job Centre helping in cases like this. It's actually one of the reasons I pushed DS1 to apply for UC.

And I wasn't disappointed: the staff have been really understanding and sympathetic. There's not much they can do for DS right now, but maybe there will be in the future.

I hope your son goes from strength to strength.

My 23 year old was diagnosed at the age of three. He has Semantic pragmatic disorder.
Have had to fight for him all his life. I won't go into it all but 2 years ago he temped as a carer. He is now full time and seems to really enjoy it. Although he lives at home he is fully independent. He games, goes out with friends who have always looked out for him. Does his own washing, meals etc.
His social skills are a bit lacking but that depends on how comfortable he is with his surroundings. And yes he argues with me....
He has just started to learn to drive.
This is not a boast of how well he is doing, it's to say there is hope. I have recently been told my own life is time limited and it gives me peace. His two siblings are there for him too.
Take care all of you.

@froufroulala - I love hearing the good stories. Thank you for sharing. And I'm so sorry you've had bad news yourself. It must be a comfort to know your son is surrounded by people who care about him.

Wow! You are the only person I have ever heard that
has had the same diagnosis for their child. My son was diagnosed at 3. You are so lucky that your son has friends . We moved about so much my son lost his over time. My heart breaks for him .

There are so many sad posts. I hope this year is better for everyone. It's really difficult.

@Chouxpastryishard I also have never met someone who has a child with this, hello!
Yes he is well blessed to have friends now but he went through tough times too. I have always questioned my way of bringing up, so to speak, as I was advised to send him to a special school but I insisted on mainstream which undoubtably made his life harder. But his older sister was there and kept an eye on him.
Rambling a bit here but when he was around 7 we thought his reading capability was good. He would ask me to read the book and then he would. One time I said just read it and he couldn't. He had been memorising every book I had read to him. I cried and cried that night for being so blind.
His friends have been with him from playgroup onwards. But.....
not all is lost if you have moved around. Not only helping him with his reading, gaming has brought other friends to light and last year he finally got himself geared up to meet 2 of them! He is meeting them as much as he can but they both live a distance away.
All through this I have had to let go of my fears that he won't cope. My elder two have encouraged him as well. I really hope things go well for all of you.

Thank you. I had the same thing being advised to send him to a special school. He is very bright but the organisational side of things was really hard for him. I understand what you mean when you say you’ve had to fight . I feel like I fought and fought for years. It was so hard. I’m glad to hear your son is doing well and waters are calmer.

I just wanted to check in. Have three boys, two diagnosed with HFA and attended special Ed schools. Eldest has significant mental health problems as well. Spent years as teenager sectioned.
Nothing to add just comforting to read I am not alone.

Hi - I wondered if I could contribute an answer to the question about whether the adult can have counselling to then help the child? I have had this, but I had to pay privately for it. It did help enormously though.

I'm glad and sad to see this thread is still going. It is such a struggle sometimes, oftentimes for some of you and there seems to be very patchy, if any support.

We limp on in my household. DS got some part time work over the Christmas season. It was vaguely in events, but he didn't have to interact with people too much and it was outdoors, so it was much less stressful than the job he was doing previously.

He is still drinking far too much, IMO. He drinks daily, not a vast quantity but still daily and when he meets up with friends, he drinks a lot. And he is still 'self medicating' his hideous gastric issue with weed. He did finally get around to getting actual medication from his GP and a referral back to the Gastroenterologist. He also got some blood tests and is on some vitamins and minerals, which were very low.

He has applied for one job in the industry he has ideas of being in, so we'll see where we get with that. He has applied for other short term things, none of which he wants, it is just for the money.

I tried some gentle conversations about a way forward but got nowhere.

Anyhow, I just thought I'd check in again. Sending all of you remote best wishes for fortitude and perseverance.

@MargoLivebetter - I'm sorry to hear of your son's continuing struggles and how upsetting and worrying this is for you. Drinking alcohol will be worsening his gastric issues - does he know this? But maybe, like my sons, he would only listen to a professional who said this, rather than his mum.

At least weed can help with pain and anxiety.

That's good that he found a job over Christmas. Not the full-time job you want him to have, but a rehearsal.

Today, I heard that my son has been given a learning mentor through his EHCP. This is truly amazing, as he hasn't received any help from the EHCP since his last failed attempt to attend college. The trouble is that he doesn't want to see anyone. He was horrified when I told him the news and said he won't see the mentor..

I told him I wasn't feeling well enough to argue about it (gallbladder issues - awaiting an op), so he backed off. I think, when I'm feeling stronger, I'm going to have to be really firm with him. Sometimes, he comes round to an idea like this, given time. The learning mentor will work on independence skills, which he desperately needs. DS just lives in the everyday, with us looking after him, but I see the future where we aren't here anymore and I'm terrified for him. He needs to learn to look after himself.

@0nceMoreUntoTheBreach That’s really helpful to know, how did you arrange this and who did you use?

@Rarewaxwing I hope he changes his mind on the mentor. It sounds like stubbornness is a common trait going from this thread. I guess it is tied in with inflexibility! Sigh.

@MargoLivebetter - yes, it's about rigidity and fear of change. I think DS is terrified at the prospect of being pushed out of his comfort zone.

I feel for the learning mentor, as he's got a challenge ahead of him.

OMG, I have somehow persuaded DS1 to give the learning mentor a try! It's a miracle!

That’s brilliant news!!

@Gem2006 - thanks, it is! I keep saying to DS that this is the year things will change for the better for him and this is a step in the right direction.

@Rarewaxwing great news! Good things do happen. 😊

@MargoLivebetter - yes, they do!

I met the new learning mentor at an online meeting a couple of days ago. He has experience dealing with young autistic adults and children and understood the need to build up a relationship slowly with my DS. All we can do is try it and see how it goes.

Frustratingly, I've had to delay the start because I'm having a bit of a health crisis at present and due to have an op next week. It must be the first time I've turned down the offer of help. At least it gives DS time to process the news. Hopefully, we can start in February.

How is everyone else doing at the moment?