Planning for university

Thanks for your comments nmr. I have to suppose that each university has its own version of 'support'. The mentoring sounds good. As a parent I would like to know that someone there had their eye on his progress or any potential problems, especially when Longman (above) said that parents are out of the loop because he is over 18.

To start with he needs this evidence of disability, hence this new post 16 assessment that has to be organised and paid for up front. I have decided to ask staff at his present college about organising this, even though he has had various assessments all through school and also just lately before sitting an exam (an exam that went badly because of many distractions, as you might expect with 5 different exams going on in the same large hall and a dispute with the invidulator who didn't have a note of my son's allowed extra time. This lack of care makes my blood boil, but is typical of the difficulty he has had so far, and I suspect will always have).

He and I realise that he has to fit around the NT crowd in order to get on, but we will grab at any help, even if it is not as it should be.

Halls accommodation is an important issue. Find out what's available and reserve the right sort of accommodation early, as there can be a mad rush for places at the start of an academic year and you could end up with something unsuitable. Halls do vary with some halls on corridors with communal kitchens, others run as self contained flats of half a dozen students, while a few have shared rooms (or even two or three rooms sharing a toilet with multiple access). Some can be very anonymous, elsewhere you may be too closely confined with a disagreeable group, and it is very difficult to re-arrange accommodation.

On a pre-enrollment viewing you cannot always get a clear idea of what it would be like full of students, some with over loud hi-fi systems or televisions, and you need to look at communal areas. There can be issues over sharing fridges and sharing clothes drying facilities.

Some universities still put all the disabled students in one block, or on the ground floor, or in an area less popular or less quiet. Others will put disabled students in with mature students or overseas students with the notion this may be quieter. Or one instance I recall, an aspergers male with 5 girls in a flat with the absurd notion this would be supportive!

The support available still varies widely between universities. nmr1991 seems to have had a favourable arrangement.

It is important to shop around, ask lots of questions, and ask to see facilities.

Assuming he is still considering university, to get the necessary support, as soon as possible i'd advise you to look into student finance and see what benefits he would be entitled to such as DSA (Disabled Students Allowance), I was in receipt of this allowance last year on my first year of university and received support from my university's centre for disability.

As far as paying up front fees, the only things that were required was you had to complete a form including filling in details like proof of ID, evidence of disability and so on. If I remember correctly it took about 6 weeks to process from this time last year so that I got my support in place just in time.

My support involved 1:1 mentoring, monthly progress reports with the disability officer and the DSA allowed me to refund my printing and photocopying costs.

I guess you could say I coped well enough at my halls of residence, apart from the noisy distractions coming from outside and immature behaviour expected from the students who were 2 years younger than I am.

Independence is very important for him, he will have to get to grips with it sooner or later. We are not expecting uni to be like school, well, I hope not; he was expelled from his school in the first year of 6th form (a whole other story which left us rather battered). He is now in a college (30 miles away) and doing well enough. This college does not seem particularly well organised in the SEN department or passing any information home, and he is left more to his own devices which he has found he likes. He has found friends and is happy working in teams and a less fraught atmosphere. I think it might be a better stepping stone to university in the way that they teach and do assignments, whereas the 6th form at his old secondary was more 'schooly'.

As for the confidentiality issue, well, what can I say, he is 18 and his own man. I guess I am trying to push him out of the nest in the safest way. Neither my husband nor I went to a university, but we have both had our share of dead end jobs and don't want this for his future when he has such a curious mind. We will also look into apprenticeships.

We helped our other 3 children (all older) with what they wanted to do and I can do no less by my youngest. Only one of them went to university and is now a teacher and she is a great source of advice for my son. She has worries that he may not manage the sheer amount of work and the strict deadlines, but not about him living in halls or making friends.

Thanks again for your thoughts.

Unfortunately university is in the transition trap ..... all the help you've had so far has been provided around school or some colleges. There really isn't anything very much formalised beyond, so finding out is a great deal harder, but also crucial.

There are books on life at university for people on the spectrum, but those I'm aware of are very dated now - eg Jamieson J and Jamieson C 2004 "Managing Asperger Syndrome at College or University - a resource for students, tutors and support services" David Fulton Publishers in SEN Post 16 Series. This may be available in some libraries and contains useful background for parents.

There were several student orientated initiatives such as BRAIN HE, designed for a range of disabilities including aspergers (set up by de Montfort University at Leicester) which seems to have fizzled out, and the Claire Sainsbury Discussion Group no longer running. These tried to make the process easier for students.

The problem is these initiatives were made when there were few students that had gone through the process. Every university now has substantial experience, but is also aware of the wide variation in behaviours and abilities, and no-one seems to be writing up a corpus of this knowledge (unless I've missed something). There are research studies and projects but not around in readily readable form.

In addition Disability has tended to get lost in the drive for "over-arching equality" strategies, where every equality issue has a more or less standard posture. With funding problems universities have tended to opt for the level playing field model (provide the note takers, or recording devices and extra time in exams, but don't address the individual so much). But that is changing.

Depending on the University, and how effective its assessment service is, you will get some of the help your son needs, but it wont be like school. No-one has got round the inflexibility of course curricula yet, which makes it harder for students with aspergers who cannot meet all the criteria. And there is a lot of expertise out there, although the quality of understanding amongst lecturers and tutors is flaky.

On the other hand universities are much less interventionist, so all that direct action in schools disappears, which your son may welcome. A lot of expectation is placed on the student to self-help, and that can be the difficulty.

Also you will come up against the confidentiality issue where staff cannot talk to you about your son's work without his written permission and approval from high up in the system, although disability support workers may be allowed to talk to you. Universities tend to work directly with the student and lock out the parents.

There is as yet no provision I'm aware of to get round this. On the other hand your son may benefit from greater independence and less intervention.

So basically it will be difficult to find out much, but it isn't completely unknown territory, just very different from school.

Thank you, longman. You have certainly given me a lot to think about and look into. We are making the first steps to even considering university. He is showing a strong interest and we feel we ought to help him explore the possibilities of university further. The alternative is  the jobseeker queue or dull factory work if he is lucky. I'm taking what you have said on board.

Thanks for your comment, autismtwo. We have already had experience of 'support' that isn't, and the paperwork and correct procedures missed because I just haven't known about them.  I think that with the initial diagnosis a comprehensive and practical information guide (with lifelong updates) for parents and the ASD person would prevent us from floundering about trying to guess what to do for the best. For instance, I have only recently discovered this website.

You may find you have to make payments up front, which you can get re-embursed once your son gets a disability education allowance. I don't know the up to date details, but you pay for an assessment on which his needs are assessed, and if your local authority or whoever is making payments in your part of the country allocates money, you will be able to recover those up front fees.

If you don't qualify, and again I don't know the thresholds, then you might have to pay for support yourselves including the fee.

I was hoping someone who has recently put a son or daughter through university would respond to your request sooner, so failing that meantime, I've offered what I can.

My immediate concern to feed back was the balance between being scientific and 'mathy' and the expectations of a course on computer science. By all means pursue it if he can but look carefully at what is expected of him. Most degree courses have standard course expectations which means he will have to show proficiency across all the learning outcomes to complete the degree.

Ask to see the course outline - it may be downloadable on the university's website, but they should provide a detailed outline. Also ask how the course is assessed - how much by exams and how much by coursework? Is there any group work, where the mark is awarded to a group rather than individuals? How much is written (essay syle or report), and how much is calculations, including setting out the thinking process?

Look carefully to see if there are any aspects he might find difficult on account of the aspergers, and if there are, find out whether the course allows alternative assessment. For example working in a group may well be problemmatic - particularly if that means he ends up with lazy group members because the better groups wont take him - you may be able to get the option of an individual submission. If he has trouble with written work, how this is set out may be critical. There have been cases of people on the spectrum not seeing the point of explaining the workings if the answer to a question looks easy, when what the assessor wants to see is the detailed workiong out process.

Mathematics courses are often highly theoretical; an applied maths form may be safer than pure maths, and numbers skill may better suit a course in accounting.. In computing, the ability to write computer games software may not be what the course is about - if there are things in computing he really cannot do, you had best establish that early on.

Teaching environments in computing often mean sitting in a room with many terminals close together, and lots of people working on them - would that be difficult.

Try to get a meeting with the staff who would be teaching him before the start of the course, to find out if there are constraints.

quote "As he would like to go on to university to study computer science and I would like to encourage him to reach his potential and find a niche in the adult world, we went to a university open day last week. I targeted the 'Student Support Accessibilty' Desk and they said for him to get any kind of support at (any) uni he needs to arrange an Educational Psychologist Assessment (EPA) and it was likely to cost us about £300, before going through other administrative hoops with the county council etc. to get all the right forms"

this is not about the money, this is about hurdle jumping for an impersonal adminstration system. It is an economical and psychological barrier CREATED BY THOSE who say they wish to help ? It is a nightmare for autistic people,, social hoop jumping, if it was not for you supporting him,, he would not be even looking down the university road,, all this red tape, forms, money, assessments is just a sick barrier system creating an expanded paperwork system and jobs for pen pushers.

Makes me angry ! 'Student Support Accessibilty' , Educational Psychologist Assessment (EPA), etc etc etc,, the ******** trail of Camerons Britain.

You have the same barrier system for benefits and health,  I AM NOT TALKING ABOUT A BARRIER SYSTEM,, I am talking about THEY ARE THE BARRIER SYSTEM.