ASD Carer for University

Hi Mum, I've held back form commenting up to now because I didn't think I had anything useful to contribute.

One thing I will share with you is that as an autistic adult I moved from one end of the country to another in order to attend a specific university. Like your son, I was super bright. However, it was an unqualified disaster and the whole experience has scarred my life ever since.

If only I could turn back time, I would never move so far away from home to study and would look for alternatives to mainstream university such as the OU which would allow me to study at home.

Gerty said:

Remember Universities are keen to get as many students as possible, running as businesses.

Exactly - they'll take anyone's money whether it works out of not.

I have a son at Uni.

They can provide quiet rooms.for vulnerable students, extra time in exams, regular meetings with disability support team, and possibly other things, but not the level of support you are requesting. 

Perhaps he should wait a couple of years until he has matured and.perhaps gained confidence, try a few short residential periods away from home. Or look.for on line courses.

Don't spend 9.25k per year of his money, plus hall fees, unless you are sure. It's a very difficult decision.

Remember Universities are keen to get as many students as possible, running as businesses.

Good luck.

I also agree with Plastics comment above and with the other users concerns. This is a lot of responsibility for a young person to take on. The amount of change your child is about to go through is going to be extremely difficult for him and the any supporting person to manage. I would think your situation will need much more planning in place before any further steps forward. 

An issue I foresee is that physical difficulties can be well defined and catered for.   When people are dealing with things like autism, the carer really has no idea what they are letting themselves in for - especially if this would be your son's first time away from home for extended periods.    Does he manage his stress and anxiety?     Does he meltdown unpredictably?    Does he become violent?     

It's much more complicated than just making breakfast for someone - it may be very difficult to expect a young person to take on this level of responsibility..

Your local council area should have a carers centre. In Scotland where I live all council areas have a dedicated Carers centre that supports carers within the catchment area. You could ask your allocated social worker for assistance on locating this service for you. That’s unfortunate your social worker hasn’t been more of a help to you. You could maybe ask to speak to their senior social worker and explain that your struggling to find the right service and you don’t know where to start to look for support for your son. It’s important that you have a good relationship with them and you have the right to ask for a new worker if you don’t feel they are providing you with adequate support. 

Hi do you have a link for the carers centre?  Can only find things about unpaid carer's......thxs

Thanks not heard of the carers centre - social worker has just told us to find someone and not provided any help at all!

Will investigate....

You could call a Carers centre.They may be able to point you in the right direction. Does your son have a social worker? Could you ask them for assistance to link you to a service that provides what level of care your looking for?

There are no universities close to home, so that is not a possibility (OK could go to local college but course not what he wants to do) and everyone lives in during first year (and most years).....there are quiet areas so that is not an issue.

Was not thinking of a 3rd year student to fill this role - it is full time but a current 3rd yr so newly graduated next year.

Actually using me is not a financial possibility as the council money can not be used for a family member.....plus my other children need me!

This is not that unusual - students in wheelchairs/other physical disabilities often have live in carers.

My question was if anyone had experience of one of these and/or if anyone had any ideas on how to source one.......I guess not.

Thank you

Mantra said:

Living in with your son may also be worth considering

That might end up as the most practical solution.

Based on what you said, this might be tricky in university-run halls. Halls are very loud and busy places, with lots of spontaneous social activity at all hours, anyway. Private accommodation might be better for a quieter experience that's easier to control and leave him able to opt in or out of things. You never know what you're going to get in terms of who you live in and around with uni halls.

I lived in halls and found the experience overwhelmingly stressful. I've lived in 2 different halls for 2 different years at 2 different universities. Being away from home was another huge stress - without that support system I didn't realise I depended on. I didn't know the area as well, so it was all so difficult. I did not successfully complete those years of uni - but there were other compounding issues outside uni for me, too, it wasn't due to this alone. But I also didn't/don't need a carer.

Having lived in halls, I don't know of a situation where a carer (3rd year student or not) can live in with a student.

3rd year students are also still young and have a huge amount on their plates, especially if it's their final year. They may end up not being reliable - if their uni studies get stressful, they will likely choose to focus on what they're paying tuition fees for and drop any extra commitments. 

Universities are also always stretched when it comes to resources, plus university is designed for a more 'independent' experience. The latter doesn't rule out people who would need a carer, but it means the support you'd expect from college or school is not the same at university. Many 1st year students struggle with this change as it is.

Plastic's idea is a good one about choosing a university commute-able from home. Private accommodation might also be another option. Living in with your son may also be worth considering, genuinely - you're someone he knows. Studying remotely via an online course is another idea, if this is an option for the course he's interested in.

I couldn't say what you're asking for (finding a carer for within uni halls) is impossible as I truly don't know, but it sounds unusual and with a time limit on it, too, that sounds like a lot to pull together. Not meaning to be pessimistic here, only share thoughts and some almost-relevant experience.

I wish you and him all the best.

Hi - I'm not trying to be obtuse - but if he needs that level of support, surely it would be simpler to go to a more local uni as a day-student - then when he's not in lectures, he can be at home - it takes away all of the stress and the need for you to travel great distances if he's had a meltdown or can't deal with things - and what happens over the weekends?    No lectures, no support, unknown social life based around loud music and alcohol - can he survive that?  

Will you be doing thousands of miles going back and forth?

You have the time to change everything - my daughter changed her mind the week before clearing - it was stressful but it all came good in the end.

Thank you for your response

Going to a uni a long way from home living in halls

Council care assessment has awarded 40hrs support a week - due to need of continuity (does not like lots of different people helping him) and also someone to be on call - he needs someone to live in.

Kind of a big brother/sister role - helping with organisation, food, getting to the right place and ensuring can socialise and participate (has other conditions not just ASD).

We thought somebody in their last year of the uni without a job next year may like to do this - gap year kind of thing - but university are refusing to help us find someone - in fact they are being extremely difficult.

We have had comments like we do not do things like that, we can't support somebody like that and most recently we do not think he needs a carer (they have never met him!).

My worry is we are running out of time and without this person he can not go - or I will have to go and support and that is not going to be a very good solution him having his Mum at uni with him!

He is very bright - so on one hand I think adjustments should be made so that he can attend this place and on the other why should he be going someone that so obviously does not want him....

I'm afraid I don't know the ins and outs of the system but what are you looking for?    24/7 cover or someone to help out with stress management?

All of unis have a student support team-  have you spoken to them?

Also, is your child going to be attending a local uni just for the lectures or staying full time in halls and having to sort out meals and washing etc?      Will they be attending miles away?

I know a girl who had a taxi provided that meant she lived at home - no stress of having to hand around and get lonely if she couldn't break into the student social life.

There's lots of options - what are you looking at?