Coping at university - AS son aged 23

Hi  

Believe me, I'm not expecting magic solutions.

We have been working on making the degree work at this university for five years with three separate periods there interspursed with three periods back at home due to poor mental health health/unresolved issues (first two breaks) and unresolved time management/support/motivation issues (latest, current,break).

My husband and I give support in terms time by phone, text and Skype several times a day to help Will get up, get to lectures/seminars on time, schedule the work, eat, wash, etc. and it is very tiring, and frustrating and worryin when Will goes to ground and doesn't respond. He has had suicidal periods so we do get woried when he doesn't answer. It signals that he feels very low (or wants solitude, or avoid us).

He started coming home every weekend, as this enabled him to have the scaffolding of the family routine, regular meals and to write an essay (sometimes), which he couldn't manage to do without structured support.

He stopped having a laptop at college, to avoid the distraction of FB/surfing etc.

Will had a good AS mentor and we arranged separate academic peer support, but he used these services/attended meetings sporadically.

After a long series of less satisfactory arrangements we have support from a really good AS-aware, Psychiatrist and GP in the university town, but despite this (and regular meds reviews) things remain tricky.

The highly academic university just seems too much. (And yes, husband and I have five university qualifications between us.)

The current cycle has to be broken but it isn't obvious that moving to another university will magically solve anything. In my opinion, many universities will provide very poor environments for people with Aspergers with unresolved mental health problems.

What drugs is he on? What have they diagnosed?

What subject is he doing?

It is remarkable that he has perservered this far, I also think that his idea of fun may be different to other peoples ideas of fun but if he isn't in the right mental state to go to lectures then he may not be able to make it work anywhere at the moment.

It is also remarkable that his college have supported him through so many retakes - have you spoken to them about what they think his potential is?

Did you and/or partner go to uni?

Thanks so much for your long and thoughtful response.

As you know, AS / ASD stories are often long ones, I am supposed to be working right now, but just checked and can't resist a quick response to your kind comments.

Will is at one of two well-known universities with a college system and very high demands: two written pieces of work a week (essay, plus translation). Tons of reading of difficult, obscure texts.

If he'd had the diagnosis sooner (it was only when he left home and went to university that the extent of his difficulties really became apparent) we might have encouraged him to find a more suitable university. Despite unexplained and mis-understood ups adn downs when younger, he got through school and college without major anxiety or time out, having support of family and school. Will did well at A levels (very well). University and living independently was too much, however. But Will didn't have the insight or language to explain what he was feelign or to knowwhat was happening. He blaimed homself adn did as much as he could to hide what he saw as his own failings. One major breakdown later and lots of health appointments and psychology appointments, plus lots of learning all round, plus disability/mentoring support, we're all still struggling on but it feels like we're going round in circles.

Currently Will has applied through UCAS for a transfer, so maybe we're making progress. It's difficult giving up on the romance of dreaming spires but if you don't go to the lectures/classes/meals and spend most of your days in your room eating take aways its not really much fun, nor intellectually stimulating. More stressful and miserable.

I want to help Will break the cycle and set a less lofty but more achievable goal. Baby steps needed, I guess. He's made huge progress in cracking the depression so, I'm sure progress can be made.

I'm always on about the lack of good up-to-date guidance about university courses for people on the spectrum. Too much guidance material written ten to fifteen years ago, when much less was known about how people would manage at university, is still in circulation. I've particularly expressed concern about NAS's reliance on Jamieson & Jamieson "Managing Asperger Syndrome at College and University" SEN Post 16 series - great book, very useful, but published in 2004, when universities had seen few AS students. Surely we have more collective knowledge now?

Picking a university reachable from home is probably the best option, and people shouldn't turn up their noses at the newer universities. These younger universities aren't so pressured to produce research papers, and staff are more involved with direct teaching. In a Russell Group the big names you are paying for seldom see any students - the teaching is done by junior lecturers and research students, and the pastoral care can often be dismal.

Having said that I would advise against restarting at a local university. If he has enough exemptions to enter at year 2 maybe, but students pulled back to repeating first year get too drawn into the time-wasting that goes on. He might be better to stay put.

Having to lengthen the course because of autism is not unusual. It is costly if they charge a lot, but I would advise considering any leaway in the time a student can take to complete. The object of the exercise is surely to get the maximum benefit from the experience, and there isn't a race to get into the job market - let's face it post-graduation support is pathetic for AS students and many don't get jobs. Not a nice state of affairs but no sign of any serious effort to improve it.

Usually lecturers cannot talk to parents, the contract is with the student. Student services may find ways round it, but essentially, having had everything run by parental intervention through school, parents are suddenly out of the frame, and well - it is easy not to appreciate the effort that has to be self-generated.

I do think more needs to be done to understand the study environment before starting a course. You've got to see the working environment in action (open days at weekends - empty lecture theatres, quiet corridors, quiet halls of residence, just don't help. Rooms full of computer terminals (complex noise and movement, proximity etc) and laboratories (smells, things suddenly happening, safety issues) can be really problemmatic. Not being strongly social can mean not getting the best seats in lecture theatres.

So I think you need to arrange to get a look at your son's studying environment. And is he fitting in at all? A group of flatmates might get each other up and ready. A loner might be left to sleep in. Many students keep on top of things just by following the crowd - if not socially successful he may not be getting the information.

Too often the support in universities is based on the social model and aims at "a level playing field" giving disabled students a piece of kit to give them equal chance. This doesn't work for people on the spectrum, who need some course outcome/curriculum adjustments. As no-one is pressing for this, universities have been slow to make such accommodations.

Hope this helps a bit, but ask for more if you want. I'm a retired university lecturer (a newish university) but was also a disability coordinator supporting a number of AS students. I'm four years retired now, but not as dated as some of the advice doing the rounds!