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Help understanding becoming an adult when you are autistic.

25 replies

EnglishRose1320 · 22/08/2023 08:58

Just wondering is anyone who is autistic, could help me with my ds. He turns 18 next month and seems to be really struggling with the idea of becoming an adult. Now I'm aware lots of people struggle with the idea and it's not an exclusive asd trait. But lots of his poor mental health signs are back and I want to help him before he becomes worse and I was just wondering how to discuss it with him.

Sorry I'm not explaining myself very well, essentially I don't want to ignore his asd and just force my way of dealing with it on him. I'm very aware that every asd person is totally unique but wondered if anyone had any general tips that might help.

Some things that we haven't seen for ages are back, excessive stimming, refusal to wash, refusal to leave the house, shutdowns.

I just don't want to get it wrong. I want to encourage him to still engage with the world, but only if that's right for him.

I also don't want him to see me panic. His health hit a low a few years back and he was sectioned and I panic when he has a dip.

OP posts:
EnglishRose1320 · 22/08/2023 09:15

Also he says he doesn't want to celebrate his 18th, and that's totally fine, if that's the case. But sometimes in the past, it's been that he has wanted go do something, but felt he wasn't able to, worried he wouldn't cope etc... and this time I just can't tell. I don't want to do nothing and then he be upset, but I don't want to arrange something and that be wrong.

OP posts:
EnglishRose1320 · 22/08/2023 16:46

Also any tips on transitioning from children to adult services, it feels like a minefield!

OP posts:
EnglishRose1320 · 24/08/2023 09:00

Anyone?

OP posts:

Interested in this thread?

Then you might like threads about this subject:

Capitulatingpanda · 24/08/2023 09:05

I'm sorry no advice but bumping so hopefully more people see your post. As an autistic adult I had a lot of those issues as a teenager and honestly have no idea when or how things improved but I'm sure I would have appreciated a parent being so caring and proactive x

Enoughnowbrandon · 24/08/2023 09:08

I am autistic and never wanted even to be a teenager. I thought it would literally make me a different person. Can you explain to him that he will still be him, not a different person just because when he is a day older he is categorised as an "adult"? And try to minimise internalised expectations in him of how he should suddenly be as an adult
.

Winter2020 · 24/08/2023 09:12

Hi OP,
My child is autistic but he's only little.
I wonder if it would help to reassure your son that he doesn't need to change and be "adult" until he is ready. He doesn't need to move out for example and you are still there to help with practical tasks and decisions.

You could tell him that the average age to move out and get your own place is much older for example.

It's not child one day and adult the next but a grey area where he can gradually go at his own pace towards being an adult. He might need to make his own decisions now but you can help him.

Winter2020 · 24/08/2023 09:17

With the not wanting to celebrate his birthday perhaps if you have a meal at home/takeaway/cake if he would like that but in his presents (if it is affordable) he could have a voucher for a place he likes to go for a meal and/or the cinema or an "I owe you" certificate you make for something he would like to do so he knows he has those things to look forward to to celebrate his birthday but he can book them and visit them at his own pace without the birthday heightened anxiety.

PimpMyFridge · 24/08/2023 09:19

My DD would respond well to a visual chat.
So I wouldn't talk about 'becoming an adult' I would ask for a chat about how a new era can be really confusing and it would help if someone who's been through it chatted (i.e you and him).
Then I'd chat about life stages, which tend to be defined by development and readiness.
So even 'childhood' is is broken up into baby, toddler, little child, older child.
So too 'adult' is quite meaningless really and it's all too much at once.
So in a chat with my DD I talk about this and draw while I talk.
It ends up looking a bit like a dinosaur book, y'know where you have your epochs and eras, Devonian, Cambrian, Jurassic etc etc, as the overarching period. But those are split into other stages and things come and go under that big umbrella.
So you would have 'adult' as a headline but under that, you've got young adult and then twenties, then mature adult, then, middle age...
While I'm sketching I'm taking about how the transition is really gradual.
A little independence at first, still family structure there to catch you if you fall, experimenting with life choices, lots of support still, this period can last ages, a time to have fun, no rug is going to be pulled etc.
Only when young adult is ready do they need to consider anything further, perhaps they'll dabble in this or that, jobs, living elsewhere... Nothing is set in stone. Take it at your own pace...
Done right they can see that this 'milestone' is actually just a gradual thing which from one year to the next isn't really that different from the year before.
A person blooms gradually like a flower.
So I use lots of sketches, analogies and make it look more like a path with stepping stones than a cliff edge.

ArseInTheCoOpWindow · 24/08/2023 09:20

My DD’s pyschiatrist told me that emotionally ASD young people are a third behind the emotional/ developmental level of their peers. So my dd is 17, but emotional development is about 13. This really helped me. They go out into the world much later than their nd peers. Fluoxetine has also helped Dd.

l share your worry. She still won’t attend school.

BadgerFace · 24/08/2023 09:25

PimpMyFridge · 24/08/2023 09:19

My DD would respond well to a visual chat.
So I wouldn't talk about 'becoming an adult' I would ask for a chat about how a new era can be really confusing and it would help if someone who's been through it chatted (i.e you and him).
Then I'd chat about life stages, which tend to be defined by development and readiness.
So even 'childhood' is is broken up into baby, toddler, little child, older child.
So too 'adult' is quite meaningless really and it's all too much at once.
So in a chat with my DD I talk about this and draw while I talk.
It ends up looking a bit like a dinosaur book, y'know where you have your epochs and eras, Devonian, Cambrian, Jurassic etc etc, as the overarching period. But those are split into other stages and things come and go under that big umbrella.
So you would have 'adult' as a headline but under that, you've got young adult and then twenties, then mature adult, then, middle age...
While I'm sketching I'm taking about how the transition is really gradual.
A little independence at first, still family structure there to catch you if you fall, experimenting with life choices, lots of support still, this period can last ages, a time to have fun, no rug is going to be pulled etc.
Only when young adult is ready do they need to consider anything further, perhaps they'll dabble in this or that, jobs, living elsewhere... Nothing is set in stone. Take it at your own pace...
Done right they can see that this 'milestone' is actually just a gradual thing which from one year to the next isn't really that different from the year before.
A person blooms gradually like a flower.
So I use lots of sketches, analogies and make it look more like a path with stepping stones than a cliff edge.

This is one of the most helpful things I have read on Mumsnet in 11 years of being on here. My 10 year old DD is autistic and is very scared of puberty at the moment so @EnglishRose1320 ’s post resonated with me (and I think will be us in 8 years!).
Thanks @PimpMyFridge for helping me to think in a way I would not of thought of by myself, which I know will help my DD.

ArseInTheCoOpWindow · 24/08/2023 09:27

Is he in burnout? Sounds like he could be.

PimpMyFridge · 24/08/2023 09:32

BadgerFace · 24/08/2023 09:25

This is one of the most helpful things I have read on Mumsnet in 11 years of being on here. My 10 year old DD is autistic and is very scared of puberty at the moment so @EnglishRose1320 ’s post resonated with me (and I think will be us in 8 years!).
Thanks @PimpMyFridge for helping me to think in a way I would not of thought of by myself, which I know will help my DD.

Thank you! That bright tears to my eyes because I have stuff going on making me emotional today so it was nice to know I'd helped someone. ☺️

PimpMyFridge · 24/08/2023 09:43

If also talk about how expectations to celebrate this or that birthday often best no resemblance too what those birthdays actually mean.
Whether you are pleased about your birthday or not is all to do with how settled and relaxed you feel than what the number is!
I was happy (ish) at 18 as measuring up to peers reasonably, at 21 it was awful - had no idea where I was going in life. So letting a birthday slide by low key is fine and he should know that. Maybe it could be an opportunity for nostalgia and looking back instead of forward, reassurance that those things are still in touching distance and not irrelevant. So a film day where you stay on your PJ's eat favourite foods and watch films you lived when you were ten (or whatever) would be a nice way to wrap those comforting thoughts round you as you move through the whole birthday thing (which tend to trigger life angst)

PimpMyFridge · 24/08/2023 09:43

Grr typos

Dogniss · 24/08/2023 09:57

I’d be careful about the transition to adult services and make sure you have as much involvement as you can.

I only say this because dd (autistic, years of MH issues) had to speak to someone at crisis team as they wouldn’t talk to me at all. She told them she wanted to die, they bluntly told her that was her choice. I have no idea if this is standard for adult care, but it meant that dd will no longer engage with adult services about her mental health, which is a nightmare.

Dogniss · 24/08/2023 10:00

I also expected to be a different person when I became an adult, but in my late 40s I still feel exactly the same as I did at 17!
I think I’d have found that reassuring to know when I was younger and panicking about growing up.

alloalloallo · 24/08/2023 10:08

My daughter has ASD and has recently turned 18 and she had similar issues.

She didn’t want to turn 18 or be an adult.

She’s always struggled with transitions (new school years, new teachers, etc) but this was harder than ever. She has an older sister, so knows that nothing dramatically different happens when you turn 18.

She didn’t want a party - and because 18 is one of those ‘big birthdays’ she felt she had to.

Everyone makes a big deal of being 18 and an adult now but she didn’t feel ready to be an adult.

She has some other medical and mental health issues so all the medical professionals in her life would disappear and be replaced with new ones as she moved out of child services into adult services - that was the biggie

There wasn’t really much I could do other than be there with a hug and reassurance and help her figure out what was going on.

She didn’t want a party? Ok, cool, let’s go and have a girls shopping day, nice lunch and some cocktails - she was up for that. I was a bit sad for her, her big sister had an 18th birthday party, all out friends kids have had 18th birthday parties, but it is what it is.

Yes, you will be an adult, but we’re not going to kick you out or suddenly make you fully responsible for yourself, but after a chat with her, we decided to have some cooking sessions together, she puts the washing on, stuff like that - one night a week she sorts dinner - chooses something, shops, cooks, cleans the kitchen, etc. We’ve always done stuff like that but making it ‘official’ so to speak helped her feel more in control

I’ve found with DD that lots of preparing her for the change helps her get her head around stuff so for the change in HCPs - we chatted to CAMHS and the hospital, they were great, we met the adult services professionals several times in the weeks leading up to her birthday and she has a specialist ‘transition’ therapist.

She turned 18 a month or so ago and once we got past that, she was fine. It’s that build up and not knowing what to expect that causes the most distress.

PimpMyFridge · 24/08/2023 10:25

Dogniss · 24/08/2023 09:57

I’d be careful about the transition to adult services and make sure you have as much involvement as you can.

I only say this because dd (autistic, years of MH issues) had to speak to someone at crisis team as they wouldn’t talk to me at all. She told them she wanted to die, they bluntly told her that was her choice. I have no idea if this is standard for adult care, but it meant that dd will no longer engage with adult services about her mental health, which is a nightmare.

Bloody hell! If you were sat at a bus stop and a random stranger said that you'd rustle up something better than that! 😲

inloveandmarried · 24/08/2023 10:37

I could have written your post.

It's the fear of not having the skill set or the mental energy to do all the things that seem so unreachable to them. I think the difficulty is that to them things are black and white. 'I'm 18 therefore an adult but um scared to adult because I can't do it'.

My youngest regressed a lot at 19. They went back to needing to be babied for security but this passed within a month.

If your son is at home and you are able to support him that makes a big difference.

Some practical things.

If you haven't already apply for a need's assessment. You get one via GP referring to social services disability team. This flags needs, it signposts too, and will help the transition and training if they are able.

Ask also for a carers assessment for you. This asks what you can do and are prepared to do with a time line. Looks at how you are coping.

You can ask for a limited work capability assessment. This, even if they don't qualify for benefits will acknowledge their limited capacity for work and cover their NI contribution.

Consider applying for PIP. This is exactly what it's for. This can be difficult to access unless you understand the process but there is lots of help to understand descriptors for each section. Stick to the discriptors and write it to include the relevant discriptor for each section. If you are not successful then appeal, take it all the way to tribunal with a specialist panel. The vulnerable especially people with autism really need supporting and the system isn't set up for this.

If they are transitioning to adult mental health services he can fill out a form giving them permission to liaise with you directly. Otherwise it's a nightmare to navigate.

Same with the GP and dentist.

My youngest refuses to clean teeth and gets frightened at the state of them. Recently discovered they can tolerate the hygienist at the dentist gently cleaning them for them. Still can't cope with the dentist but it's a positive step forwards getting into the building.

Wet wipes are you friend. If they can manage wet wipes for essential personal hygiene it's another step towards being clean.

I always say to my autistic adult children that the process of gaining life skills is slow. It's not instant, there will be setbacks. That we can do this together one step at a time. I say when things don't go to plan that it's a learning opportunity. We are all constantly learning.

My younger autistic (adult) child coped being in a quiet restaurant with a friend on Sunday. I booked it, i asked for a booth, I settled them, I ordered for them, then I sat outside with a glass of wine. They really wanted to try to do this together and both (autistic) young adults managed to tolerate the new environment for half an hour, without speaking to anyone and enjoy a pizza. I was in phone contact and being messaged by them.
I'd say that was a major step forwards.

It's about acknowledging every small step and also acknowledging that there will be many times it's a step backwards.

You are not alone.

EnglishRose1320 · 02/09/2023 15:42

Thank you for all your replies, for the empathy, support and tips.

Sorry for the delay in replying, its been a stressful time. The count down is on, just over a week to go and alongside that, we have the dreaded University application to deal with.

Apparently he was meant to write his personal statement over the summer break, which he hasn't done, has bo idea how to do it and expects me to sort it out- I'm trying to let him see, he needs to do it and it good practice for uni, but that's not going well.

I feel like emotionally he is no where near ready for Uni, but he is so fixed and rigid in his thinking, he can't contemplate going at a different stage, he needs to follow the typical path.

I'm terrified that he will never cope on his own. He's just had his last ever camhs appointment, he's been signed back to the gp. Next week he has his last ever enabling session, from his funding from children's social services, he met the threshold to transition to adult services, but as to be expected, its not actually happened and we haven't heard anything.

OP posts:
carla103 · 02/04/2024 01:42

I know i’m late to this but the whole mental age thing is something i’m struggling with right now. I’m autistic, diagnosed at 15 but previously seen as a difficult child etc. I’m now 18 and really struggling to function. I don’t know if it’s because i’m expected to have the abilities and stuff of an 18 year old and i don’t. But i’m just stuck in a cycle of never being able to function well enough and doing the bare minimum, if that. I do well academically but struggle to keep up with sixthform demands & deadlines. Arranging holidays and shifts at work is proving challenging. And just arranging my life, money, socialising and etc feels impossible and as a result is massively dysfunctional. I can’t seem to maintain healthy habits and i hate myself for it. I don’t know what to do because my mum is the only person i have really but she isn’t in a place to provide support (she has said how things feeling all about my autism makes her feel like sh didn’t matter. and i really don’t want to make her feel bad) so I feel like i’m on my own and i can’t do it. i feel like a child in an adults body most the time. i just want to be able to manage and look after myself like normal people can.

LuluTaylor · 02/04/2024 01:54

Autistic people struggle with change. What does he think is going to happen when he turns 18? Ask that first to see if it's something easily dealt with.

Or has he already had some puberty related change recently that he's struggling with?

Or has there been an event that's troubled him? Eg some form of bullying etc

I wouldn't organize a celebration when he's in a state about changes anyway. If he changes his mind later, he can have a random party or whatever at any point, it doesn't have to be on his actual birthday.

I've never been involved with children's services so can't comment on that. Do you have any specific questions about adult services?

Is it this changeover that's bothering him? New social worker or leaving a SEN school or something?

LuluTaylor · 02/04/2024 02:16

@carla103 you may never be able to function without support, that's the truth of it. Or you may function well but at a lower level than average, like being able to manage a part time job but not a full time one, for example. Stop expecting yourself to have the ability of someone without autism for a start, that's expecting too much of yourself.

Look into autism support services. See what websites or drop-in advice services there are. See what basic-humanity skills you could learn that you don't already know. Try to create work-arounds for the things you find difficult, to improve your functioning.

Find what life you can cope with at the moment (maybe studying one A level instead of 3, for example. Only socialising once a fortnight or whatever works for you without being overwhelming) and build up from there.

Look into housework systems, because they help you avoid chaos and build routines, the latter could be useful for you now. Better than being plunged into even more chaos because you're clueless when you move out of the family home. When you do move out look into tenancy support services, charity or council, if things start to deteriorate, don't leave it until the point of eviction.

Living a life of constant stress and chaos will make you burn out or cause MH problems. That will cause even more difficulty in your life so it's worth avoiding this by avoiding overloading yourself so much you can't cope at all.

It was really shitty of your mum to say that to you. She's entitled to her feelings and if she doesn't want to support you now you're an adult, that's her choice, but she should have kept that insensitive comment to herself not laid it on you for a guilt trip. You've nothing to feel guilty for. You didn't choose to be born, that's on her! And you didn't choose to be autistic, that's nobody's fault.

You'll get more responses if you start your own thread. Your post will get lost in the OPs thread otherwise.

carla103 · 02/04/2024 02:29

thank you so much!
i will definitely look into the support services etc. And i’ve decided to do my a levels in two sittings rather than one which is more manageable (so i’ll do chemistry next year).
i’ve always had a tricky relationship with my mum and that’s by far not the worst thing she has said and as a result guilt is something i struggle with so thank you. i think she struggles due to being a single mum and i remind her of my dad (who isn’t diagnosed but has a lot of autistic tendencies). i also think shes embarrassed of me because i don’t tend to socialise in a way she and her family find acceptable. so i try not to take what she say to heart.
thank you for you help i appreciate it :)

LuluTaylor · 02/04/2024 02:32

You're welcome @carla103 🙂 feel free to PM me any time, I'm autistic too, so I understand.

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