Massive anxiety about DS1 (ASD) starting uni

[Thaawtsom]

I can't work out if IABU / this is just meno-driven anxiety and/or if I should do something (and if so what). DS1 is just doing A'levels and has chosen as his 1st choice a big city uni that is 4 hours away from us that is prestigious for his chosen course. He was adamant he wanted to be that far away from home (I think he really wants to "start again.") He is ASD and can't cope with neighbours talking outside our house without needing to put on sound cancelling headphones and shut his window. We still need to get through results (and it's not a slam dunk he'll get the grades he needs by any means). We are in the process of getting a formal diagnosis, but has not yet happened (we should have it by September). It makes me sick to think about him going to uni: he can cook (restricted eating, but can cook the things he likes to eat), he can cycle and maintain his bike, he can operate a washing machine, he can tidy up after himself. BUT he doesn't do these things consistently and really struggles with anxiety and procrastination. My instinct is that he needs a year off (he is young for his year) and then to apply to a uni closer to home (there is an excellent one close to us) with his diagnosis in hand from the beginning ... I am holding off talking about any of this until he is through A levels as he has really really struggled with A levels (which is what has triggered getting ASD diagnosed now). I also think that halls would be a disaster for him (messy, noisy, potentially drunk / drug issues) and we have applied for "quiet living" and en suite self-catered (no guarantees we will get it). I guess I'm asking whether it is better to support him in his current chosen path and pick up the pieces if it doesn't work out or really try to influence the outcome from here? I suppose it's a question of "are my fears real enough that as a parent I should step in" or "back off it's his life and you are an unreasonable anxious mother." I realise strangers on the internet can't categorically answer that question, but I would be interested in thoughts and reflections and experiences if any of you have them. Thanks for reading this far!

While I agree with you I’m afraid as he’s an adult you’ll just have to leave him to get on with it. He may end up surprising you.

I will say, even if you pick en suite, most students in the halls have parties in the corridors/smoke outside in the garden so noise is something he will have to get used to. They don’t do no-alcohol halls unfortunately.

I would visit the halls and just take his lead on what he thinks. I would visit ASAP as it’ll be a lot quieter if you visit and term hasn’t started.

i am autistic and while I didn’t go to uni, I flourished when I had a bit of independence (residential school trips, trip away with my now ex, starting to stay at my partners half the week when I live with my parents 24/7)

My daughter is married to a young man who is an academic genius but finds practical skills very hard and went to uni unable to cook in any way or do washing etc…

he’s not diagnosed but there is no doubt he is neurodiverse and I think is autistic, had adhd and Tourette’s ( certainly a lot of tics)

he was fine at uni… ate a lot of pot noodles I think but uni really was ok… they met at a board game club and I don’t think he has ever been on a club!

he did go to a uni near home but it he did live in halls and then a student house and I think that was good as he had to develop some practical skills.

On the other hand my youngest DD is just looking now, she’s also autistic and is very young emotionally.

She is planning on staying at home and possibly deferring for a year. She defiantly wants uni but wants to grow up a bit more after school and we are planning a mix of work and volunteering.

I am not sure if this helps….but good luck!
These are big decisions and hard to make but sometimes I have found you just have to pick something and then work with it ( all 3 of mine are neurodivergent!)

OP, you should be very proud that he wants to do this, so support him 100% to go to the university of his choice. So it's 4 hours away? I'm sure there are trains, and the whole point is to break free of the family and get some independence.
And if it doesn't work out, then at least he tried and will learn from the experience.
This is about you managing your anxiety, more than anything to do with your son.

Appreciate your responses, thank you. And @Cynic17 this is exactly the crux of my dilemma: is this just about my anxiety or is my anxiety actually telling me something I should act on? I have been leaning towards "it's about my anxiety and should calm down" (and if it goes wrong we just pick up from there) but was interested to hear from others who might have BTDT. I think I we might spend some time over the summer talking through what he might encounter and figuring out how he might deal with those situations, but in a low-stakes "this is totally manageable but good to have some strategies up your sleeve" kind of a way.

So he's due to go this September?

Firstly have you applied for DSA and had your assessment? They can cover things like taxis from halls to uni, and also mentors. Then you need an appointment with the university's own disability advisory service who will be providing the adjustments like extra time and committing to quiet halls and an ensuite (and paying for the difference between shared bathroom and ensuite as a disability adjustment)

We went on the Autism summer school at Bath and there was a student there who had a mentor who would take them to the launderette once a week and who, when struggling with food, was given a budget for ready meals. I wasn't sure if that was the uni DSA or the student finance DSA though.

I've had one YP go to a local uni and gone up every week (or 2-3 times a week!) to support them with life tasks like washing, shopping, taking batch cooking, tidying. However I've got one planning on doing 5 hours away this September and I have no idea how that's going to work.

Quiet halls are necessarily quiet either, and also sometimes putting a bunch of unsociable people with their own quirks together doesn't work out as well as one might hope.

The son has not been diagnosed yet so he can’t apply for dsa.

It sounds like he has some awareness of coping strategies for things he finds hard (e.g. the headphones) so he's already in a better place than I was when I started uni! Maybe talk with him about other measures he might want to take.

Possibly he finds it easier to procrastinate on housework-type tasks when he knows his mum's always there to take over, and might be more proactive living independently. Anyway loads of uni kids are bad at this stuff.

If it's a prestigious uni I'd expect there will be quite a few students in a similar situation, particularly if he's doing a traditionally "nerdy" subject like maths or physics.

Thanks @sprinklesandshines and @MadlyTrudyDeeply : yes, it's an additional issue that we won't have confirmed diagnosis until September (another argument for waiting a year -- he will be a bit older, we will have diagnosis (all signs from the team diagnosing him that they are expecting a positive diagnosis), and we will have a' level grades in hand so the uncertainty piece will be v different when looking at places). But also, I don't want to be holding him back unnecessarily right now if I don't have to ... (and to be fair he might be wanting to do this anyway because of how rough A'levels have been for him).

@JeremiahBullfrog yes, full on nerdy subject. :)

I don’t have advice as such but am in a similar position. As little as 2 years ago we did not think uni was a realistic possibility. DD is v academic but could not see herself able to leave home etc. on the one the hand I’m so thrilled she decided to apply and has firmed a prestigious uni for her also v ‘nerdy’ subject. She too does not yet have a formal diagnosis. I’m mainly concerned about the food/eating side of things (she is v limited in what she can/will eat) and of course the social side. We are however v lucky that her firm choice is fairly nearby, but her insurance is around 3 hrs away. I’m going to be led by DD in this I think. If, over the summer, her anxiety goes through the roof about going to uni, I’ll reintroduce the idea of waiting a year. Good luck to you op. Your DS sounds lovely and like my DD. She’s so capable at some things (like algebra 😂) but can’t face going into a shop, or eating anything that isn’t exactly the right temperature, texture, colour etc.

I think a lot of it is going to come down to you having a leap of faith and letting him go and find out for himself. My DS is similar and starting uni in Sept. He went on a trip to Japan a couple of summers ago and came back so much more confident and independent it was astonishing. He had to share a room with another boy who was quite lively and talkative and managed. He was in group with other kids who seemed to suffer anxiety and have melt-downs. And he stepped in and helped them through it.

What I'm saying is don't unintentionally underestimate him and try to keep your own anxieties hidden as much as possible.

DSA that funds the mentoring and other support is crucial, and he won't get that without a diagnosis. Ideally you'd have the diagnosis in place early so that you can get DSA sorted before term starts (we made this error!).

I think you should wait until his exams are over and then talk to him about it with all the facts and options on the table. Ultimately it's his choice so you need to be careful to keep your anxiety to one side.

I don't know if it helps your anxiety but GS has just finished first year at uni. One of the lads in his flat in halls has ASD. The other five cut him some slack but generally he's no worse than the rest of them, they are all messy and untidy and get told off by staff in the halls.

Obviously he might be very different to your son but he's survived the year, made friends, has some friends he's going into a house share with.

It could be good for him. I hope so.

You can apply for DSA without a diagnosis. I remember reading that without a diagnosis you need a letter from a medical professional detailing the ways that the person is affected. It would be worth looking in to.

My dc has a physical disability but I emphasise with a lot of your post. Mine also has restricted eating.
Looking back at time of selecting firm I was pushing her to safer option as I was worried how she’d cope. She stuck to her guns and is 4 hours away and has had a great yr1.
It’s that line between needing them to get on with it and recognising some scaffolding will help.
I fully kitted her out and stayed overnight at drop off to get her room fully set up. She picked first move in slot so kids and parents were still moving in day after so it wasn’t obvious I’d been there Fri and Sat.
I sent lots of longline safe food so I knew even if she didn’t shop for a bit or couldn’t face kitchen she was ok. The kitchen was absolutely disgusting most of time - she is a perfectly competent cook in our nice clean kitchen but at some points couldn’t face more than running in and pouring boiling water on a itsu noodle pot and running out again avoiding the broken glass and mouldy dishes.
I left her to settle but did go up around 6 week mark so I could see she was ok. She also FaceTimed a couple of times a week. I now use Snapchat as that’s her preferred method of contact, photo of dog always gets a response.She’s not been home a lot but we have been up a few times.
We have a family uber account she can use if need be.
I do follow various uni accounts and societies on social media to give her a prod.
Looking back it was right uni for her and she’s thrived.

Have you/he contacted the university to see what help they can offer while waiting for diagnosis?

My son started at a university that is a 4 hour train ride away and 6 hour drive (not that we own a car!) and has had a very good first year. The one thing he did find really helpful was that the university has a scheme for ASD students which allowed them to move in 2 days early and get to familiarise themselves with the university and get to know some other students with ASD. This gave him a really solid friendship base from which to build on.

The DSA stuff was nice to have but not essential. He has 2 mentors one for ASD and the other for study skills, but he is not overly keen on asking for help, so the 1 hour session rarely last more than 20 minutes. I think the only software he reguarlaly uses is Jamworks which uses AI to summarise (and give a full transcript) for his lectures. He used his own laptop, but DSA repaid the cost of a speciality support and insurance policy though I believe this is only an option if the laptop is under 5 years old when their course finishes.

When things have gone wrong, it has been me that has calmed him and helped sort things out. He also agreed that I could access his university email and learning platform so I can regularly check he is completing everything he needs and basically act as he PA.

If you receive his diagnosis in September, it will likely take a long time to set up support as they will be at their busiest. I would seriously consider a gap year to ensure all possible support is in place before he starts. With a medical need he will get priority for his preferred accommodation choice and they may even foot the difference in cost between an en-suite and standard room. I think your fears are real, but let him choose where he wants to study.

My DD’s uni allowed you to put the different halls available in order of choice. While it wasn’t guaranteed she got a room in one of the quieter accommodation blocks further away from the campus, which was what she wanted. It took quite a bit of research to work all this out. Might be worth doing OP if your uni has a similar arrangement?

One thing to bear in mind is lots of students are ND or have additional needs. The unis are geared up to it.
Accommodation wise they will accommodate needs. The problem with a quiet flat is it might be everyone hiding in their rooms whereas in a regular flat there will be a mix of kids and may be some that will reach out and include everyone. If you speak to accommodation they should be able to guide you.
The food thing was a big concern for me as she simply won’t eat if it’s not right. Even us going for a meal when I’ve visited has helped and she’s then been with her friends knowing there was safe food. I make sure she’s got enough money to buy the food she eats - she eats so little I’d rather she got what she’ll eat even if it is from M & S. There are meal options on campus usually if that would work.
It’s not one size fits all. Some kids in dc’s flat with no diagnoses went home every Sunday for a roast and their washing doing. Some never went home all semester.

Speaking from experience I strongly recommend encouraging your ds to go to his chosen uni. If he thinks he can cope he probably can. My dd asked to be in a small flat of five to a kitchen and in a self catered ensuite hall. She hasn’t had issues with noise. If anything I’d say it’s a little too quiet as nowadays they seem to spend more time in their own rooms. Sometimes the kitchen has been a mess and she has eaten in her room. They find ways to cope and become a bit more resilient. Your ds will probably meet like minded people on the course or in societies and it will be exciting for him to be somewhere new. Just be ready to visit him every so often if invited and look forward to seeing a new part of the country yourself.

OP, the thing that troubles me most about your post is your DS's tendency to procrastinate. At university it can be all too easy to fall very far behind before anyone at the university picks up on that fact. Do you think your DS would agree to discuss with you what work he has on so that you can then discuss a plan re what he is going to get done when, and you can then check in with him re whether he is keeping to the plan? My suggestion will horrify the "They're adults. Leave them to it" brigade, but I don't personally think that the "Leave them to it" approach is a good one for every 18-year-old, particularly if you know the young adult in question has major issues with procrastination.

Both of mine have an ASC. Both of mine have done far better at Uni than I would have expected. ds1 has just finished. ds2 has done 2 years. I honestly expected ds2 to manage less than 24 hours (he stopped coping with school in year 5 and did his A levels with home tutors) but he really wanted to try so had to let him. Sometimes they surprise you.

Other than extra time in exams and automatic, on asking, coursework extensions (which I think is of dubious benefit for procrastinators and perfectionists as mine are) they have no extra support. Student support is there but only if your young person is capable of asking for it.

My DD1 is currently at uni and she is studying a course that attracts a huge number of ND students including my DD. They had a separate ND induction whereby my DD met most of her uni friends and she said the cohort from her class at the event was disproportionate. Most of them seem to be thriving including DD who is in her 3rd year and all of her friends. It is natural to worry but you might be very pleasantly surprised.

@OneInEight thank you so much that is so encouraging. One of my other kids who is not yet uni age is not in school (ASC, burnout) tho v bright and I am parking worrying about that DC for now but encouraging to hear that story too!

@MadridMadridMadrid yes: I think the experience of A'levels has been extremely painful but also a really good wake up call for DS. He's known he was spectrummy since about Y6 and has used ASC friendly strategies through secondary school. Getting an ASC diagnosis now has been driven by him as part of his acknowledgement that he definitely needs to proactively put in specific support strategies (which to be fair he's been doing all the way along as he's come to terms with what he can and can't manage; I just think the prospect of needing to manage without all the scaffolding home provides might need more ... attention).

Thanks for taking the time to respond, everyone. It really helps.

Would they qualify for PIP or adult social care funding that could pay for PA to check in / prompt / help with life skills / check not self neglecting (which did happen to a friends child) - or pay for less busy accommodation. I know someone who had to get a studio flat as they couldn't cope with group living.

DS (ASD) went to uni 2 and a half hours away and is coming to the end of his 2nd year now. He loves it so much that he's staying up over most of the summer to do a research project.

His diet isn't great but he does feed himself.

He was assigned mentors (DSA) but decided after one meeting that he didn't really need them 🙄.

Advice from DS's psychologist about settling him into uni:

Make sure your DS gives consent to the uni for them to contact you if they have concerns about his wellbeing (without consent they can't do that).

Make sure he has flu and cold remedies with him and is prepared for "freshers' flu".

Go to visit him a few weeks in to check how he is.