How will autistic ds manage in his life? Constantly worrying.

(30 Posts)
whatstobecomeofus Wed 24-Nov-21 14:21:28

I have a 17 year old ds who has just received his autism diagnosis. He couldn't go to school because of being bullied and did online schooling instead. He's now doing a Btec at college.
He has medication for his anxiety and me and dh (both autistic) keep him right with everyday life and keep him feeling safe.

I'm constantly worried about what will happen to him once we're dead and don't know what will happen to him. How will he earn a living and what benefits might be available etc. We took him for shoes yesterday and he didn't cope with the music in the store (he forgot his noise reducing earbuds) and it made me realise just how affected he is. We have no extended family or friends. I'm scared for the future, what can I do? Where do autistic people live and work? Dh and I had to give up work but we don't claim benefits. I don't know the system. What will the jobcentre do with him?

Any advice is welcome because we don't really know what goes on.

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flipflop76 Wed 24-Nov-21 14:26:07

Not much advice but I totally empathise. My 42 year old brother is very similar. He lives on his own in a council flat and does have a job (after years and years of unemployment and struggles) but my parents have provided all his support and he continues to need their support to run his life. He would no way be able to keep on top of bills, general money management and just organising his life. I worry massively about coping with him when they are no longer around as I do what I can but I've got a little one and I'm not as local as they are. I also find him very difficult but that's another thing!

flipflop76 Wed 24-Nov-21 14:27:15

With the job centre they kept pushing him into temporary jobs he couldn't cope with so he kept being asked to leave after a week or so of each job. He presents as very articulate so people think he's more able than he is.

ChristmasScrooge Wed 24-Nov-21 14:27:34

There's supportive living.

My DC has autism and learning difficulties and when we are to old to care for him, we are hoping he'll agree to supportive living. I know a few people with autism in homes like this and they are doing very well. smile

Highlanders372 Wed 24-Nov-21 14:28:51

If you don't mind me asking, how do you manage if you don't work and don't claim benefits? How do you support yourselves? Just thinking that if you can both manage life without working then your DS shouldn't need to worry about employment if he can't manage that either.

Tal45 Wed 24-Nov-21 14:40:11

What is he doing a Btec in? Hopefully he will find work in that field? Autistic people don't live or work somewhere different to other people (well unless they are unable to look after themselves - which I'm sure your son will be able to with your initial help). I certainly wouldn't write off his ability to work and live alone just yet. I'm assuming you're both planning on living a while longer so you will have plenty of time and opportunity to teach him how everything works. How to set up bills, direct debits, a lot can be done on line now. Unless he is disabled enough to claim disability allowance he will go through the same process for benefits as anyone else.

Not coping with loud music is an easy fix, it doesn't rule him out of a job. His anxiety is likely to he the biggest barrier so it's great he has medication for that. What I would absolutely encourage him to do though is to get a little part time job, it will really build his confidence and is something to put on his cv when he's looking for fulltime work. My son was diagnosed at 10 so I understand the worry for the future, the trick is IMO to prepare them as much as you can by getting them doing as much as they can. Just please have high expectations for him and keep encouraging him.

whatstobecomeofus Wed 24-Nov-21 15:11:15

@Highlanders372

I have a widows pension from my first marriage and dh rents a couple of small properties out. Ds won't have a regular income although we're hoping the properties can go to him if they're not needed for care costs (another worry). We want him to at least have a roof over his head.

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whatstobecomeofus Wed 24-Nov-21 15:15:43

He's doing an Applied Science Btec so we were thinking he could do labwork in the future. He's supposed to be looking for work experience in this area but nobody is taking on currently because of health and safety or covid. He doesn't have any intellectual impairment and got all his GCSEs it's just his inability to cope with noise, stress, other people which lets him down. He can cope if it's calm, quiet and not too bright (he wears darkened glasses).

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SmallGreenStripes Wed 24-Nov-21 15:17:10

A science apprenticeship might suit him?

whatstobecomeofus Wed 24-Nov-21 15:26:29

A science apprenticeship would be ideal, but I've heard they're scarce and very competitive. I might have to contact the college to enquire. We've asked the psychiatrist and psychologist if they know of any training/employment resources but they didn't know.

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Bqpo Wed 24-Nov-21 15:43:41

Ambitious about autism and NAS often advertise employment schemes and roles targeting autistic people. I just applied to one today, I'm older but a not too dissimilar situation to your son, academically able but struggled over the years to get into a career because of my asd.

Highlanders372 Wed 24-Nov-21 15:46:22

I know how you feel, it's so hard as a parent not to worry but honestly I think he's going to be just fine, he's really lucky to have such loving and supportive parents, he's got a financial safety net with the properties you own and he's doing really well with his education.

I work in the NHS, lab based job. Times are really changing, every staff member now has mandatory autistic awareness training (I did mine last week). It's with patients in mind but reasonable adjustments have to be made for staff too. I know in our lab we'd be able to set up a quiet area for him to work in. Just take one step at a time, he's going to be ok.

Wildrobin Wed 24-Nov-21 15:52:21

My relative has autism and started in assisted living but now so independent and happy. We have grown close as I find him easy to understand now I’m an adult and we honestly speak every day but his parents were worried like anyone would be that he might not ever find happiness or independence (he had a hard time at school too) and he really has. He was a wider support network too locally as Is in a small community and honestly there can be such good people out there who are thoughtful and look out for him. He’s learnt to be proactive and join things within his interests and can quickly be overwhelmed in certain environments so has learnt what can manage as got older .

Wildrobin Wed 24-Nov-21 15:54:45

I just wanted to encourage you as he found growing up hard but has definitely found his happiness as an adult and made friends who understand him (and vice versa, I find him so thoughtful ) and is very positive and busy now.

Buttons294749 Wed 24-Nov-21 16:01:11

On of DD's nursery nurses/teachers has (i assume) some sensory issues as she wears earphones all day. She is the kids' favourite and there FT and always seems so happy at work.

Cop26CopOut Wed 24-Nov-21 16:01:59

My friend’s DD is autistic and a scientist at a uni - the provisions they’ve made for her have been incredible! She is living miles away from home and thriving. There is help out there - it’s a question of finding it flowers.

whatstobecomeofus Wed 24-Nov-21 16:39:21

Thank you for all these hopeful stories. I was lying awake at 3am sick with worry and gloom. His formal diagnosis makes it seem more real. We do like to plan ahead and I'll start doing some research regarding lab based apprenticeships.

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SpaceshiptoMars Wed 24-Nov-21 16:53:08

Consider getting him to take aptitude tests (psychologist). He may have some unusual abilities that compensate for his other challenges. Some employers will make quite significant adaptions for you if you have a rare skill.

SpaceshiptoMars Wed 24-Nov-21 16:57:03

Also, try supplementing magnesium. Epsom salts in the bath, gel you rub on the skin etc. It can dampen down sensory issues and help you cope better.

KatieLatie Wed 24-Nov-21 17:06:13

whatstobecomeofus

*@Highlanders372*

I have a widows pension from my first marriage and dh rents a couple of small properties out. Ds won't have a regular income although we're hoping the properties can go to him if they're not needed for care costs (another worry). We want him to at least have a roof over his head.

I would definitely start looking at “supportive living” places early, rather than later. For several reasons:
- as with all young adults, he might want some form of independence over the next few years.
- the younger he is, the hopefully relatively easier (yes, I appreciate that would in no way be “easy”) to settle him into a new life. If you wait until you are dead or too in-form to do it, it will be a lot harder to find a good place and it would be like a double whammy for him. Get him settled, yet he know you are still there for him, grow his confidence in a safe environment.
- although I am sure that they have their own problems (supportive living places), I hope that they do give support and protection. The worry is not just financial, but also vulnerability.

whatstobecomeofus Wed 24-Nov-21 17:21:22

I didn't know that about the magnesium, thanks.

I don't know what the threshold would be for supportive living as he is able to look after himself to a reasonable degree. He can make a simple meal and put a wash on for example.

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lunarlandscape Wed 24-Nov-21 17:35:26

He could look at the civil service. They were actively recruiting autistic people a few years ago. I remember my young teen son, who was very low about his recent diagnosis, running up to me to show me an ad in the paper where they specifically wanted autistic applicants. It made him feel so good and needed. They make accommodations (would probably ensure he had a quiet office with not much background music). They would match his skills to their needs. And it's a pretty secure bet for employment.

Can you gradually help him increase his ability to cope? I remember DS spending an entire festival hidden under a blanket (before we knew he was autistic) because of the sensory overload. But now, at 19, he goes to gigs through choice. He lived for a decade eating only about 6 foodstuffs. Now he tries out loads of new restaurants and cuisines. He just started really slowly and very gradually and built up his tolerance for things.

My heart goes out to your lovely DS for having been bullied. It would help to try and find a very gentle social group - maybe a teen/young adult HFA group where he could build up his social confidence too.

I actually had some CBT for my anxiety about DS's future and now I am trying hard to focus on all that he can do, on how far he has come, as well as looking for supportive and positive set ups in the world that might work for him.

Remember you and your DH are autistic and you have a life together - so it's perfectly possible he'll meet the right person and settle down. My DH is autistic as is DS and they have good lives. It is possible. It's fragile but possible.

whatstobecomeofus Wed 24-Nov-21 20:16:41

@lunarlandscape

The Civil Service is a good idea, thanks.

We try to push him to do things like go away with cadets and even College was a big step for him and he can go on the train now. He knows we won't let him just sit around doing nothing. He went to an airsoft session last weekend and dh was so anxious, but he loved it and wants to join as a member now.

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Cassimin Wed 24-Nov-21 20:28:45

There is a scheme called shared lives.
Don’t really know much about it but it’s something we will look at in the future.
Try and join a few groups with teens who are like him and encourage him to make friends so he has a group around him for support.

lunarlandscape Thu 25-Nov-21 14:50:23

Airsoft is a good idea because it's social but structured. The rules of play help lessen the stress of the unwritten rules of social interaction. DS2 used to like doing Warhammer modelling when he was younger, and also airsoft. If he gets into it, he'll need a good thick jacket as BB bullets can sting. But Christmas and birthday presents are sorted for years as there's so much kit! grin

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