Tell me about your older teen / adult DC with ASD

[TwinItToWinIt]

What are they like?

I have a 5 year old with ASD. He’s verbal and sociable and behaves himself well in mainstream school, but he does have fairly significant learning difficulties and really needs full time 1 to 1 (currently trying to sort!)

He’s adorable, despite some occasionally challenging behaviours, but I do worry about how he’s going to cope as an adult, and whether he will be happy. It’s been a bit depressing this week with Autism Awareness Week, reading the statistics about how few adults with ASD are in employment.

So... can you tell me any tales about your ASD older / adult DC? I’m (not so) secretly hoping for encouraging stories, but obviously I’ll take the bad with the good. Are they in work? Do they live independently? Have friends, partners, etc? How much do they still depend on your for support?

I do realise it’s a ridiculously wide question really, so many variables etc...

mine does some voluntary work a few times a week at a community enterprise cafe which he enjoys. He has loads of interests and an online girlfriend.
Hes great company. Very funny and knowledgable, but he does get stressed and is disorganised as he has adhd too. Needs to be given direct instructions at work rather than use his own initiative. Im hoping that one day he will be able to be semi-independent. Maybe supported housing, or an annexe type set up still with us

Considering how he was as a young child, and that he eventually went to a sen school, I think hes doing really well.

Im not pushing him into paid work, as I dont think hes ready and I definitely dont think he would cope with full time, but it would be nice if he could get something in line with his interests, but to me, the most important thing is that he has a life outside of the home. Something meaningful to do with his days.

I’ve just recently tutored a student with ASD who holds down a full time job where he is very well liked. He has been customer facing and is absolutely perfect for working with people. However his short term memory is shot at and he is very disorganised- although we’ve worked on that and he is much better with the organisation!

I have an almost 16 year old with ASD and ADD. She is hopelessly unorganised and the school (mainstream) have been shocking with her. She is extremely bright and all of her information and facts are stored in her head she then has issues getting them down onto paper.

Am keeping everything crossed she scrapes through with some GCSEs the problem isn’t her knowledge the problem is and has always been converting that into readable answers.

She is hilarious, not a drop of empathy in her though. She frequently tells me she acts normal but finds it exhausting so I encourage her to tell
me all her weird thoughts and then I tell her what is acceptable and what’s not.

Ie getting a present you don’t like. You say thank you very much and then later you come to me and we work out a way of returning it. That type of thing.

She worries me every single day of my life, I love her desperately, she annoys the hell out of me. I wouldn’t change her for the world, I just hope the world can change a little bit for her.

Mine drives and works. He had one to one all the way through primary then went to special school for secondary. His dyspraxia is major - in some ways more of a problem than the autism. He wants to buy his own flat. He loves holidays. He does need us still and is disabled compared to a neurotypical peer. He is one of the nicest people in the world.

I’m a teacher so have actually taught and tutored any number of ASD students myself, many of whom have been very successful, but it’s mainly been in grammar schools so not really representative.

@LostArcher your son sounds lovely!

My Ds is 16 but was only diagnosed age 15. His late diagnosis and lack of support mean that things are incredibly difficult for him. I have no doubts had he been diagnosed and supported much earlier, we wouldn't be in the situation we are in now.

Dd was diagnosed ASD and ADD at age 13. Her teenage years were extremely traumatic with serious mental health issues - self harm, an eating disorder, suicide attempts. She was in and out of a psychiatric unit for over a year. She has really grown into herself and matured into a lovely person! She is at uni, doing well with a circle of friends. She remains quirky and a free spirit... that’s just who she is!

My son went from being behind at primary school, socially as well academically (although everyone could tell he was bright but couldn't get out on paper). He caught up and then pulled ahead and got on to a very competitive uni course. He had coped very well living away from home and has friends (lots of nerds at uni). He is still young for his age and a bit passive socially, not showing any interest in romance (never has.!) but i dont think he could cope with uni work and a girlfriend. He did have a part time job last year and managed. He is to nervous to attempt driving though.
All in all better than i expected and in some ways better than his brothers with ADHD.

My ds is 18 and at college, he had a very bad year 11 at school mental health wise and took a year out of education after year 12 as he was just so exhausted by life. In hindsight he should of done this after his bad year 11.

After his year out he went back to college and retook his maths gcse and started his level 3 courses... he's so much happier now. He's been learning to drive although not lately due to Covid. He's settled and after college hopes to get a job. He feels college and a part time job would be too much atm though. He's quirky and funny and such a special soul. Hasn't got any real life friends but has a few online that are important to him. He's like a girlfriend one day too and I keep reminding him it will all happen and he has plenty of time. He did get down watching his peers all get jobs, go to uni and partner up etc..

It’s really hard to tell how an autistic person’s life will pan out.

I have one autistic daughter with very high care needs who is extremely complex and will never be able to live independently. But if she’s in a good provision, she’s extremely happy. My main concern is whether she’s happy.

I also have an 11 year old dd on the spectrum and I’m on the spectrum myself. She and I both have very poor executive functioning. I didn’t have any academic difficulties at all but she does and they are mostly caused by the fact that she also has dyspraxia.

You have to take one day at a time, you really do.

My 13 year old with asd is more high functioning, he's always been very spirited and involved in friendships etc... he doesn't 'see' authority and struggles to just accept rules cause someone says it, this can lead to conflict and especially in school but as he's got older he's settled more. He's great company and popular and always wanting to be out... my boys are very different.

Mine is in a stable relationship and goes to university, albeit living at home. He is charming and funny, he also still flaps and paces about when he is stressed.

I am in my 40s with DC, a 20 year relationship with DH, have always held down a job (getting the job was always harder then doing it, I don't interview well), I drive and am quite happy in my own company, or that of my family. I don't have any friends really - over the years I have stepped away from friendships that's were not quite the right fit. I'm happy with that though, a lot of people obsess over their autistic child's friendships. I just wish I had known when I was younger I was autistic, I could have made better choices, particularly with people.

I think with the friends issue we worry more than we need to... Friendships as a teenager were so important to me but my eldest just isn't fussed at all, he has online friends and he finds real life friends a bit too demanding as he will go out with them once then not want to again for months. He's absolutely fine I'm the one that worries.

Mine struggled at university, and in hindsight we should have made sure he stayed closer to home. Four-five hours of angst on the motorway to get to him in a crisis wasn’t great.

He’s back living at home at present- but then, so is his NT brother.

He managed to get a job in every uni holiday and was valued in a year-long work placement.

He’s currently working on his own computer project (which has started to pay out a bit).

I worry about him socially a lot. He’s lonely. But day to day, things are kind of ok.

Mines 16 and also has a physical disability.

He's fab

He does have his struggles. He still finds people hard to understand but he's now aware he can't read facial expressions and body language so can find his own ways around this.

He doesn't go out with friends and is too anxious to go out alone.

But he swim trains for hours (13!) a week and is aiming for Paris 2021 para olympics.

He had support throughout school and had some really difficult times. He had some cbt through camhs and sadly was a target for bullies.
I always (at camhs suggestion) allowed him a day at home if he couldn't manage it. I rang him in sick. But the advantage of this was he felt able to go in because he knew we all would support him if he needed to come home.

He's an amazing memory for facts and can talk at you using language and words I couldn't even spell to Google the meaning of - but simple everyday conversation isn't natural.

However he is the most amazing polite mannered boy and has an array of learnt phrases to talk to you.

Everyone gets asked how they are, to have a nice day when we say goodbye etc. He may sound like a robot when he says it and only says the same things everytime but he without fail melts the hearts of adults who find him charming!

Yes he gets very wound up at times. Sometimes just a word can trigger him getting wound up and then he'll leg out frustrations about a whole host of things.

The other day I stupidly mentioned it was officially day 1 of the Easter holidays. He finished college last weds. Which led to a whole 10 minutes about how it wasn't a fun day (well no kid - you aren't at school now!), hed had 2 exams and the last one was English. Onto how he thought when he left school he'd never have to do English ever again. Onto how it's a pointless subject and why do they spend their education reading, learning and writing what they think quotes mean from famous authors.

Which ended in

If they want to know what Shakespeare meant when he wrote Macbeth why did t they ask him before he died what he meant

He's actually hilariously funny without often intending to be.

My biggest advice is remember you will be his biggest advocate and be fair to people who don't get it right - I always say "do you think I got it right first time or every time?" Who at least want to and try to get it right.
Give people advice that will help him ("what I find works in x situation is .....") but also don't knock down people who tell you that when in a different situation they actually do x y and z.

After all they are still kids who will try it on if they can

@itsgettingwierd

Mines 16 and also has a physical disability.

He's fab

He does have his struggles. He still finds people hard to understand but he's now aware he can't read facial expressions and body language so can find his own ways around this.

He doesn't go out with friends and is too anxious to go out alone.

But he swim trains for hours (13!) a week and is aiming for Paris 2021 para olympics.

He had support throughout school and had some really difficult times. He had some cbt through camhs and sadly was a target for bullies.
I always (at camhs suggestion) allowed him a day at home if he couldn't manage it. I rang him in sick. But the advantage of this was he felt able to go in because he knew we all would support him if he needed to come home.

He's an amazing memory for facts and can talk at you using language and words I couldn't even spell to Google the meaning of - but simple everyday conversation isn't natural.

However he is the most amazing polite mannered boy and has an array of learnt phrases to talk to you.

Everyone gets asked how they are, to have a nice day when we say goodbye etc. He may sound like a robot when he says it and only says the same things everytime but he without fail melts the hearts of adults who find him charming!

Yes he gets very wound up at times. Sometimes just a word can trigger him getting wound up and then he'll leg out frustrations about a whole host of things.

The other day I stupidly mentioned it was officially day 1 of the Easter holidays. He finished college last weds. Which led to a whole 10 minutes about how it wasn't a fun day (well no kid - you aren't at school now!), hed had 2 exams and the last one was English. Onto how he thought when he left school he'd never have to do English ever again. Onto how it's a pointless subject and why do they spend their education reading, learning and writing what they think quotes mean from famous authors.

Which ended in

If they want to know what Shakespeare meant when he wrote Macbeth why did t they ask him before he died what he meant

He's actually hilariously funny without often intending to be.

My biggest advice is remember you will be his biggest advocate and be fair to people who don't get it right - I always say "do you think I got it right first time or every time?" Who at least want to and try to get it right.
Give people advice that will help him ("what I find works in x situation is .....") but also don't knock down people who tell you that when in a different situation they actually do x y and z.

After all they are still kids who will try it on if they can

I’ve taught Macbeth a few times, and I have to say, I think he has a point

One day at a time is good advice. I do remind myself... he is happy, right now and, right now, that’s the only thing I can control, so there’s no point worrying about what I can’t. Hard not to fret about the future sometimes though!