Ds1 with asd thinking about university

[elliejjtiny]

Ds1 is nearly 18. He was diagnosed with Aspergers syndrome aged 9 and receives standard rate for both daily living and mobility PIP. He's just finished a btec in college where he got a distinction.

Ds is academically very able but has very little common sense. He struggles with friendships, change and he can not use public transport so either he walks or we drive him. He needs reminding to do pretty much everything. As is often the case, he thinks he is fine and that I fuss too much. I am his appointee and dh is his carer.

Originally he said he didn't want to go to university but then he fell in love with one 4 hours drive away. He wants to have a gap year saving some money and then go to university in 2025. He has applied for various minimum wage jobs and no luck so far. He does some self employed work where DH comes with him and that seems to work well. He couldn't do it on his own.

I'm not sure how university would work for him. He has never had an ehcp, just being on the SEN register with a few minor adjustments. Part of me thinks he could possibly do it with a lot of input from us like I would carry on being his appointee, we would manage his money, do his supermarket shop and phone him to remind him when he needs to have a shower, when to change sheets and to remind him to turn the oven off. Problem is I don't know how he would manage without using public transport. We have tried public transport lots of times but it almost always ends in disaster and DS having a meltdown.

Also a minor problem in the grand scheme of things but how would this affect benefits, both his and ours? Would dh lose his carers element of universal credit? If DS was living 4 hours away from us would the DWP decide he doesn't need PIP anymore? Is there any support for disabled students at university? I remember when I went I got a computer and an allowance for books because I was dyslexic and some people with other disabilities got bigger rooms in halls of residence.

DS will be able to apply for DSA. That can include taxis where necessary. For journeys not related to his studies, he could use his PIP. Can DS drive? Would catered accommodation work better than self catering?

Some also get support via social care.

Going to university doesn’t prevent people from claiming PIP. Although at assessments some assessors wrongly try to infer if you can attend university, you can do X. A bit like how some say if you can drive, you can do X.

At the end of August this year, DS will stop being a qualifying young person for UC, so your UC award will lose the child element for him and the disabled child element.

As appointee, you will be able to claim UC for DS in his own right. He will need a fit note if he is unable to work.

If DS goes to university next September and at that point DH is no longer providing 35 hours of care a week, DH will no longer be eligible for the carer element. But if DH is still prompting DS to cook/wash and managing finances, shopping etc. and picking up the pieces if things go wrong it may be he will still be providing 35hrs of care so will still be eligible for the carer element.

Thank you. He can't drive at the moment although he has got his provisional licence. I will look into DSA and catered halls. He can work but he would need a lot of adjustments. He can cope with situations outside of his comfort zone (like being with other people and talking about things that are not his personal obsessions) for about 4 hours but then he needs to come home and decompress (not sure if that's the right word) for a bit. He managed school by having his own space to decompress in at break and lunch time. College was great as he was doing a course related to his obsession and he even socialised with friends outside college which has never happened before. His friends are 90% ND and he doesn't talk to anyone not on his course but it's a massive improvement.

Goodness knows how he will cope with the social side of university. I don't think he really understands that side of things, he just sees the amazing course that he wants to do. Having said that, my DH managed to get through university as a teetotal person with Aspergers syndrome so maybe I should be giving DS1 the benefit of the doubt.

For work, you could look at Access to Work.

For university, when you look at accommodation, you could see if the university offers quiet halls/flats or consider if a studio would be better. Also, think about if DS needs an en-suite.

my DH managed to get through university as a teetotal person with Aspergers syndrome so maybe I should be giving DS1 the benefit of the doubt.

This is DD2. She is now doing a PhD. She managed with lots of support and finding a like-minded group, many of whom are also ND.

My ds is in quite a similar situation op. University seems like a good option for him because he would struggle to find a job, however my main concern is him being lonely as he finds making friends almost impossible. Hope there is some good support in place nowadays.

Which course is he thinking of doing? You don't need to tell us the course obviously but there is a big difference in contact time between courses.

DS is on a course where the students have contact time every day abs 3 days a week it's 9 till about 6.

That's a huge amount of time for him to be active and with other people if 4 hours is the absolute maximum for your DS.

DSA can pay for the difference between self catered and catered and may bell pay for a studio flat for him.

Asking about quiet flats like a PP said is a good suggestion although I don't think all Unis offer this.

Is the course that he's thinking if run by the OU as well? It might be easier for him studying from home and cheaper too.

Thank you. I've looked at the university website and it doesn't say how much contact time there is, just says it's full time which could mean anything. The course is related to his obsession, same as his college course is, so I'm not too worried about that bit. I'm hoping there will be other students who are similar to him who he can befriend. The course isn't available in the OU unfortunately. It's available in I think 5 different places, 4 of them are roughly 4 hours away from us and 1 is 2 hours away.

Can you give us some idea of what the course relates to and we might be able to give you some idea of the course tact time?

For instance Biology, Engineering & Medicine are usually pretty full of with a lot of contact hours. English and History will have less contact time.

Is the course or a similar one available closer to home or through the OU?

It's music. He really wants to go to Liverpool but they also do the course in leeds, London and cardiff. His friend from college is going to Liverpool this year. Cardiff is 2 hours away and dh goes there for work every 2-3 months so that would be better I think. But DS1 is fixated on Liverpool because you get to shake hands with Paul McCartney when you graduate and Paul McCartney is pretty much DS1's hero.

Would doing a Masters be better for him?

Do you mean doing another degree in a university closer to home and then doing a masters in Liverpool? We went to see Liverpool this week. and ds1 loved it. Contact time is 16 -20 hours a week, I don't know how that compares with other universities.

Yes, perhaps doing a degree closer to home and then the Masters at Liverpool might be a better option?

I've no idea how much contact time is usual for Music though sorry.

OP, as you’ve said Paul McCartney do you mean LIPA rather than the University of Liverpool?
It’s a great institution, but a small one, and correspondingly has less support. He’d also have to go into private halls, which adds another layer.

Yes I agree that it would be wise for @elliejjtiny to double check

@Bunnyannesummers yes it's LIPA. At the open day they said that Paul McCartney does a masterclass for a select number of third years. I think that sealed the deal for ds1, he's desperate to go there. I didn't realise small would mean less support. I thought small would be a good thing and more nurturing.

Obviously there’s still student support and DSA etc but the scale of it just means there is less offered so it’s one to look into - does what they offer meet his needs? From LIPA students I’ve also heard there can be periods where it’s quite intense, end of year performances for one. It has to be, to prepare them for the real world of working in performance but how would he cope with that. How he’d deal with halls needs to be carefully gone into because they will be less accommodating than uni ones.

I realise it sounds like I’m being quiet down on LIPA and I don’t mean to be - it’s incredible for the right student, but it is small and specialised and that doesn’t suit everyone.

Support via DSA can still be provided just the same in a small institution.

I am a band 4 autism tutor/mentor and Disabled Students’ Allowance (DSA) can provide taxis, technology to support organisation and academic studies, and study skills tuition, mentoring, or both. Your son would need to pay £200 towards the computer but the software and assistive technology training are provided free, along with everything else. I have students who receive PIP. DSA isn’t dependent on having had an EHCP.