By Julia Stewart, volunteer at Autism Wessex
My son Matthew was formally diagnosed with autism at age 14. Now 22 years old, he has just successfully completed his 2nd year as a student at University studying a BSc Hons in Computer Science with Games Technology.
At the end of Sixth Form, Matthew wanted to follow in his two older brother’s footsteps and go to university. We encouraged him, we felt that the longer he stayed in education, the longer he had to mature and face the ‘real world’.
He opted to study Physics, a subject he was pretty good at and he enjoyed. With a little help with his UCAS personal statement he received 5 offers to attend university to study his chosen subject.
When the day came we took Matthew to University, a four hour drive away, in time for’ Welcome Week’. This was a very emotional time, but Matthew seemed happy. We worried that he wouldn’t know where he needed to be, at what time, but luckily there was another student studying Physics in his flat, and they made friends.
We tried very hard not to interfere but I went up and visited him a couple of times and helped him organise his lecture notes. We then just spoke to him briefly a couple of times a week.
We heard nothing from the disability support team so we assumed all was well. I emailed them directly a couple of times and was reassured that he was fine. He came home at Christmas and seemed very happy, there were no January exams and he said he was coping with the work.
Term 2 came and went and then exam revision began. We helped him, so far as we could, while he was home for Easter, and then took him back for a few weeks more classes and then several weeks of revision leave.
After every exam he said it went ‘ok’ and we duly picked him up at the end of term. My first impression at that time was how thin he was, and then quiet and withdrawn, even for him. He didn’t seem to know when the exam results would be through or how.
When they finally came through he had failed all his exams and scored zero in two of them.
We were all very distressed. I spoke to the support people who said ‘we didn’t see this coming’. They said he had appeared to be coping. Normally a zero score means that he didn’t sit the exam. I asked Matthew - he initially said he did go, after challenging him further he said that as the first exams went so badly, he couldn’t go to the others. It was very upsetting to realise that he had been in his room alone and not coping with the work, not eating and not telling us. We felt awful - guilty that we hadn’t realised and angry that the support staff were oblivious.
The Physics department invited him to redo the year, but he said it was just too hard and he didn’t want to. This left us with a decision to make. I had a very tearful heart to heart with Matt - he was distraught and clearly very low. We discussed the options:
• Go back to the same University and study something else
• Go to a different University and study something else
• Go to a local college and study something less challenging than a degree
• Try to get on an apprenticeship scheme locally
• Get a job!
We talked about whether he’d been happy there at all and he said he really did like it, but not in the 3rd term. He thought he’d understood the work at the time but when it came to reproducing it, he couldn’t remember or understand it.
As parents our instincts were to not let him return as we felt that they had really let him down. We could not believe that he could fail to attend exams and for this not to be reported. It turned out that he had not received any of the 30 hours of academic support that had been approved. But we looked at the course options for his A levels and grades and the Computer Science with Games Technology really appealed to him.
So we embarked on another year. I had lengthy email correspondence with the ASD support people at the University and we were reassured that there would be regular updates and that he would get his academic support.
Simple errors, like emailing Matthew instead of me, knowing that he has a communication disorder, were very frustrating. We think that he was asked at his regular meetings ‘how are you’ and he simply replied ‘fine’. They failed to see that many people with ASD cannot recognise their own emotions or communicate their feelings. Matthew is by nature someone who wants to conform, please others and not rock the boat. Instead of going through his timetable checking what work needed to be covered, they may have had a little chat for five minutes or so and then claimed an hour of funding. We were warned by his school that Matthew might not ask for help and this proves to be the case even now.
Year 2 went better than Year 1, but we only just caught issues in time. He did get terribly behind in some modules. The support team refused to acknowledge that they had failed in any way so at this point we realised we’d have to do their job for them. His father and I spent many hours on Skype helping him. We supervised his revision, brought him home instead of leaving him there and made sure he was well prepared.
You might ask ‘what’s the point? – If Matt needs so much help, he clearly isn’t up to getting a degree’. In response I would say that we don’t feel we have any choice. We can’t let him fail again - it would destroy what’s left of his self-esteem, and probably ruin his chances of getting a reasonable job, which could in turn prevent him from eventually being independent. If I look back over the last three years, I would say that Matthew isn’t suited to University study, not without thorough support. An apprenticeship would probably have suited him better, but he would not have learnt how to live away from home, how to travel on the bus and train and how to feed himself.
Matthew seems to be accepting his autism more now - he wants his final year project to be creating a piece of software to help people with ASD - this is a really positive step.
• Follow your instincts- many of our friends told us things like ‘let him go and he’ll fly’. My instincts were to keep him close; it was really hard to not interfere. And in the end I wished I’d interfered much more.
• Try to choose a University that is two hours or less away but not so close that it’s too easy to come home or for you to visit. They need to be more independent than when at school, but not dropped completely!
• Keep very regular contact with the support staff at the University. Be a nuisance; get them to tell you exactly what they’ve been doing with your son/daughter.
• Get regular checks/updates on academic progress - find someone there who’s prepared to take a bit of responsibility - there should be a personal tutor or equivalent.
• Supervise exam revision and encourage him/ her with assignments - check deadlines. Ask to see the work they’re doing!
We have asked our guest bloggers for their opinions. This blog represents Julia’s own views.