Autism and going to college or university

Many people we talked with had been to university or college of further education, or were planning to go into further education. Some people had gone to colleges of further education to do NVQ courses in administration, mechanics or caring. Some were unsuccessful because of sensory sensitivities or anxiety problems, particularly on placements. One woman, for example, could not speak on the phone if other people were in the room so she could not complete her work placement.

‘The placement at the council was hell for me’

Alex was sent on various college courses by social workers after leaving school a couple of years earlier with GCSEs and A levels. She found the courses were aimed towards people with learning difficulties and so the academic level was below her ability but in other areas, other students did much better than her.

Alex describes what she has done since she left school.

Age at interview 28

Gender Female

Age at diagnosis 3

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Can you explain what you’ve done since you left school?

Not much. No. I left school with GCSEs and A Levels. Which people say is more a reflection of my memory than actually my understanding of some subjects. Like I could reel off the periodic table to you, but I couldn’t put it into practice. I then kind of didn’t really do much, just sat around, watched TV, And it wasn’t till probably my early twenties – I left school when I was eighteen – so yes, early twenties when my social workers decided that I needed to have structure to my day. So they started sending me on college courses and things like that, which some were all right and some were completely hopeless because they were like life skill courses, designed for people with a learning disability. So they practising like really basic reading and writing which was well below me. But then there was other areas where they actually were more able than me, which was quite shocking. So none of the courses really lasted too long.

Over the course of six years my old social worker sent me to five different like day centres for people with disabilities. Again, none of them really worked out. In one I was the only verbal person which as you can imagine was very boring. Another one was too far away and I didn’t cope very well with the travelling and the transition. One said that they actually couldn’t meet my needs, which again was really shocking because I’m obviously at the higher end of the spectrum, but they thought that my needs were actually too severe for them to meet. And now I’ve ended up at an independent day service, not like council run, which I attend four days a week, and do social activities with them as well. And, you know, I’ve been going there for nearly a year now, and they can meet my needs since. The first place I’ve found that has actually met my needs.

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Ian’s first college was a ‘disaster’ as it was a special course where the students were ‘treated…

Age at interview 22

Gender Male

Age at diagnosis 8

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And then I went to [college name] which was a whole disaster really [laugh]. Because we went to a special course where they treated us all like kids really which wasn’t reallybecause they had like a severe and also our type of disability as well, which, and they all treated all like severe which was, that’s why I moved to [town name] and all that, and I’ve got, had a better course and I’ve done really well. I’m on a, I’m on a mainstream course now. Did catering last year and now I’m, service skills, waiting skills, which is going to be quite good. I’m looking forward to it actually in September.

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Debbie talks about her experiences of further education and the different courses she did.

Age at interview 44

Gender Female

Age at diagnosis 35

I wanted to care for people. I really fancied the idea of being a care assistant in an old people’s home. So I went to a College of Further Education and to do a year’s course called Caring for People. That was a really good course actually, I really enjoyed it. I had to do a placement in a playgroup which was really, really good. I passed that course and then after that I went on to a two year course called Preliminary Course in Social Care’ and that was for two years. The first year I had to do placements in a play group and in an old people’s club. That was for the first term and that. And the second term I did a placement in an infant school which I thoroughly enjoyed and the last term was in a junior school.

And then the following year we had to do placements in residential settings. The first term I did a placement in an old people’s home for people who are blind. That was all right but I did find it difficult to cope. I found it difficult to cope with doing physical work, like looking after them physically. I just found it too much. And the officer in charge wasn’t very nice to me either.

And then the second term I went to a place called [nursing home]. You see I really wanted to go into a children’s thing but they put me in an old people’s home. I mean it was all right, but unbeknown to me the Mother Superior, because it was a convent, rung my mother up and said they didn’t want me there because I was a liability. And my mother didn’t tell me this at the time because she knew it would probably really upset me. Anyway it looked as though I wasn’t going to pass the course. So in the third term of that second year they, I did a placement in the college library because they didn’t know what else to do with me. But it was the best thing that ever happened to me because then I realised that I would get on better doing clerical work, you know, and I got on really well at the library. I did fail the course but I was offered the chance of doing resit, you know doing some of it again, but I said no, it is not for me.

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Catherine describes her experiences of doing an NVQ.

Gender Male

… [laughs] Yougo to college one day a week, and then you have work placement.And I was thinking, you know, I could try and do that. I had a work placement in the local counciland basically it killed me. I was all right the bit at college because it wasn’t a normal college. It was more a sort of… It was vocational college. So it was just one to one with the tutor. There wasn’t actually a classroom of students or anything. So I could deal with that, because one to one isn’t necessarily my problem, if it is something like, you know, if I am being tutored one to one, you know, it is okay.

But the placement at the council was just like hell for me because I just couldn’t cope with the office situation. I couldn’t cope with answering the phone. When I had to answer the phone, and then I had to say to the boss it’s for youAnd then they would say, Who is itAnd by that point I had actually forgotten who it was, because I cannot speak on the phone.It is one of my big problems.I can’t speak on the phone if there is other people in the room or if there is other noise because I can’t hear them both at the same time. I have real problems with sensory, with sounds and things distracting me.So she just used to look at me like I was shit and like I was worth nothing and I couldn’t really do anything other than filing or really simple sort of things that didn’t involve interaction with other people. Panic attacks all the time. I had to keep running off to the toilets and getting loads of water from the machine to calm down.

And one time I just completely snapped, went mad, started just shouting at everyone and just couldn’t cope with it and had to have a talking to from the boss, and I just had to say to the people at my college, I can’t do it. I just can’t do itAnd I just had to finish off the rest of my NVQ at the college. Just kind of. They said, Right you know, because it as an NVQ so it as like, Oh you need to be able to do thisSo I would just sort of do it at the college without anyone around and stuff.You know, send a fax, and just do that, and do a bit of filing, and just do that.And so I got an NVQ out of at the end.But I think that is what sort of drove us to realise that I had big problems. I couldn’t deal with work. I couldn’t, you know, do anything in a normal work situation.

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Simon became depressed in his third year at college and found that people didn’t respect each…

Age at interview 22

Gender Male

Age at diagnosis 5

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So I started my last year of college and I had to go through the whole process again of making friends. And it was really difficult for me because I sort of had this sort of friend, and he sort of had been with me for the whole course I’ve started off in basically and now he’s gone and it’s like, sort of a bit being left on your own again basically and I found it really, really hard, and that kind of really affected me and another thing was the class I was in was quite a few characters in there and a lot of mixture of people and there were a lot of arguments in the class. A lot of friction because some people in the class disagreed with certain things other people in the class with and most of the time it was just whole lessons with arguarguments basically and one main subject that caused a lot of arguments was the whole fox hunting subject, because there was some in my class who was, worked on a farm, and then there was some people that didn’t work on a farm, and they sort of didn’t understand that the person working on the farm didn’t like the foxes, because they’re killing their crops and stuff, and basically the whole argument, thus, basically what all the argument was about a few people didn’t sort of quite respect other people’s views in my class. That caused more problems and that basically all built up together and then yes, I sort of got depressed from it really.

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A few people had graduated from university with degrees in Accountancy, English literature and Science Communication. They had mixed feelings about their experiences.

Some lived at home during the course and didn’t socialise much, while others experienced living with other students, again with mixed feelings. Some people were currently at university. A few had found university too difficult to manage and left without graduating. Two people were preparing to go to university and they discussed the support they had been offered through the disabled student support services at the universities. Christopher hoped to do some A levels and eventually go to university.

Laurie has been offered a laptop and a recorder but said no to a note taker because she didn’t…

Age at interview 49

Does the university provide you with support?

Yes. I think so. Well they are yes, because I have gone through the disabled students and everything. I mean obviously it is something I got through, I got into well into my forties I managed to get through things, however much I might have fumbled and stumbled and stammered my way through life I have actually managed to get this far andbut if it is available and help is there, I thought it would be a good idea to actually take it.There is a two training, a two day induction for disabled students next week and it is on Thursday and Friday. I am actually only going to be able to go on Friday, becauseon Tuesday, Wednesday and Thursday I have got my training for the market research job, so I can’t go on the Thursday which I am sorry about because most of it doesn’t look especially relevant. So if I show my face then I will be happy. I just didn’t especially want to spend two whole days doing stuff that might not be that interesting. ButyesI can’t remember the question now.

About support
Yes, yes, they’re giving me a lap top… and one of those recorder things. They have offered to give me a note taker, but I declined. I wasn’t sure what I would do with piles of notes. I mean if I don’t take them, I don’t know about that sort of thing, if I don’t take the notes myself, I mean, I might, I will just end up with more bits of paper on the dining table and it is like covered in enough bits of paper as it is of various things that I can’t remember what I am supposed to do with them. I don’t know about taking notes.

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James was worried about going to university but it has been ‘brilliant.

Age at interview 22

Gender Male

Age at diagnosis 12

And all of a sudden, you know, you find, you break the barrier, you start thinking well I quite like these people and you know… and you know I mean just for an example like, I made friends with, well basically I met up with this girl on the Sunday night and it was like Freshers week and I suppose it was one of these things where it is almost meant to be a little bit of a fun week and you go out and have a good time and everyone goes out clubbing and I met this girl and it was all going really, really well and I didn’t really think anything of it, but I am still going out now. So that has been three years since September, so that was sort of like brilliant.
It is like a financial sort of its where you get your student loans and all that. It is a financial support sort of place. They have quite a lot of generous fundingactually. I will show you this in a minute because it is just here. [interruption] They gave me this and basically what it does, it allows me to sort of organise myself, organise when I have got meetings and things like that [coughs] and I can write to do lists and they probably do a lot more things and a lot of different fancy things that you probably know what to do but I don’t really know how to [laughs]. Andbasically it allows me to organise my weekyou know organise my week and things like that, my week at university and you know they have a disability advisor and basically I thought, I mean basically they will do whatever you need ,and provide you funding for whatever you need, they provided funding for,for me for a lap topwhich is you know, great,a printer, a lot of financial sort of support in terms of things like that. And they were really generous in that sort of aspect.

In regards to like other support it was most certainly offered but I sort of felt, at that stage, at that stagehaving had support, I had gradually weaned off it and I had sort of became sort of quite independent. I came to the conclusion that really you know, I want to be doing this by myself now and not relying on other people. So… I decided at that stage I didn’t need any support any more and I was basically going to do this by myself. Soyes, it was available but I didn’t really feel that I required it any more. So that was quite nice to know.

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Mark is more optimistic about his new course at university because he has a diagnosis now and can…

Age at interview 27

Gender Male

Age at diagnosis 26

…[sigh] Well, now 27,currently in processes of returning to university in a couple of weeksafter multiple somewhat less than successful attempts [laugh]. I am not sure what you want.
What are you coming back to study?
I am going back to study accountancy and economics.
What is that? Locally?
Yes, yes. That’s in [city].
And what were you trying to study before?
I originally started off doing astrophysics.I was never really quite sure why.It was just sort of one of these things, knowing that from the age of eight onwards I was going to go away and do either astronomy, physics or astrophysics. That was it.Quite how I came to that decision or when it happened or what the reasoning behind it was I have no idea. I just remember knowing that is what I was going to do, based onI decided I didn’t want to be a palaeontologist anymore because it would involved digging around in the dirt and I wasn’t really having that. I was never one for, for playing around in the dirt as a child.I was always very clean and smart and well kempt…

So that is that. Hopefully the whole sort of university process will now be somewhat more successfulnow that I have a diagnosis of both being dyslexic and the Asperger’swhich was something that was something that was never really picked up ever beforesort of be it at school or previous unsuccessful attempts at university.

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Miranda finds the pace of work at college very fast and has had help at college since getting her…

Age at interview 49

And so it is, it is quite difficult. So I do find it hard. I don’t have much of a social life really, because I have to look after my mum. Although I do go to college two nights a week and I think if I didn’t go to college I wouldn’t have an outlet. I wouldn’t have anything else. That’s the only that I’ve got really that keeps me sane really because that’s the only thing that I’ve got really, to look forward to really, because it’s quite difficult out there.

And also I found with Asperger’s we work at a slower pace, and then a lot of the other people although we get there at the end. And I find that the way that we work, because we work at our own pace we’re doing things, and I find that we make not as many mistakes as the rest of them, who rush through and have to re-do it again. So, but the, but the pace at college now is very, very fast and the teacher who was teaching me last night, he’s he has this, apparently he has the same disability as me. He has Asperger’s. He’s a Chinese boy and he was doing astrophysics but he had to pack it up for the simple reason was, because he just couldn’t keep up with the pace because the pace is so quickly now, because I’m finding now as you probably realise yourself that so many courses that used to be something like 38 weeks has now been probably reduced, down to something like 29 weeks and you’ve got to sort of be writing. And I know it sounds ridiculous, almost two essays a night, and that is very, very difficult perhaps for the average person to actually keep up with. And it isn’t easy.

Can I just take you back to the diagnosis?

Yes, yes.

We were talking about the diagnosis weren’t we?

Yes, yes.

And you said this was this one woman sort of pretty much diagnosed on the spot when she saw you. But you had to go through some sort of tests or questionnaires and questions and stuff. What did you think when she diagnosed you?

Well I was quite pleased actually that she diagnosed me. I was really pleased because it had taken me three years, and I had to battle myself, and the girl, that actually was supposed to be helping me didn’t. So I had to, I had to actually battle this all on my own. So but it is it is renowned for Asperger’s that once we get hold of something we don’t let go.

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James describes how he gradually weaned himself off support and started university without…

Age at interview 22

Gender Male

Age at diagnosis 12

And then all of a sudden like I am off to university and here I am. And you know the first year, the whole of the first year, was quite nerve wracking because all of a sudden, it is the same old story, it was being back at the academy again, but I have got no support now and I have got to go in. I had this really strict, I had this really, really strict decision with myself that I was going to go into the halls of residence and I was going to force myself to do it, even though I absolutely hated it. I absolutely hated the idea of going in and having to meet loads ofpeople, absolutely terrified. You know, so scared, and I think there is a bit of that in everyone but I think particularly for myself and [coughs] for a lot of people with Asperger’s it is horrible, you know it is absolutely horrible having to meet people. And the first night I found it really, really difficult, but the second night all of a sudden I made loads of friends.

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‘University allowed me to read things I’m interested in’

Some people had positive experiences at college or university. They found college or university easier than school because they were studying subjects they liked. A few people also found students more understanding than those at school and it was easier to avoid people they didn’t really get on with.

Damian is constantly studying after dropping out of school and being written off by teachers. He…

Age at interview 37

Gender Male

Age at diagnosis 36

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From where I same sort of academically I got a scholarship to private school did hopelessly there, and had a horrible time. I got sort of 4 Cs, 3 Ds, and an F at GCSE. Dropped out, went to college, got a B, and E, and a U at A level. Went to uni dropped out of that course, went back to doing more A levels. Got a B and a D. Then did a Degree MA, PGCE and am now doing another Degree and PhD and stuff. And I am constantly studying and to think I had teachers saying I wasn’t very bright, that I had no organisational skills or motivation to work. And its kind of those labels as well that, how teachers see you, how peers see you, how doctors see you. There’s all felt like I’m being negatively judged, when I knew I had ability [laughs]. And it was a good thing I was so stubborn and bloody minded all along because otherwise some friends of mine kind of dropped out of the system altogether it seems because they just can’t put up with it.
I’m going to do my PhD. I think it’s very hard now my son’s living with me, because I’ve got very little time to work, only sort of term time and school hours. I was made redundant from the only local job. So it’s difficulty with moving, getting work in the area I’m qualified in which is very specialist, and I don’t want the horrid kind of work I used to do when I was younger. And I want hopefully, sort of to do research into autism and education and carry on with my studies and do more philosophy I think. Kind of do research and writing and try and get the odd session or two teaching and stuff like that really. See where it takes me

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Sam enjoyed the academic focus at university and also met his best friend who he was able to…

Age at interview 26

Gender Male

Age at diagnosis 24

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I guess I quite enjoyed being at university because it allowed me to focus the academic quite simply which I enjoy. I enjoyed doing that; it allowed me to read about things I enjoyed reading about. And to a degree talk to people on similar topics that I actually cared about. But ultimately I didn’t really get along with that many people there, they just really tolerated me. I suppose I am quite an arrogant, well I am actually, I’m an arrogant person. Whether I got justification for that I don’t know, but suffice it to say I didn’t find my classmates to be that particularly interested in what they were studying and couldn’t really talk about it to the same level which I could. And they were happy with that, but that sort of made me look down on them, which perhaps was wrong of me, but suffice to say it then meant once again the distance occurred.

However, I did meet one friend at university who is probably my best friend. I’ve known her for seven years now. And that really made a massive difference, because I hadn’t had one person I could actually talk to. Who I could sit there for an hour or two or longer and have a one to one conversation with, for many years. And quite simply the benefit that that brings is worth more than having twenty or thirty friends who you can socialise with and spend time with but actually can’t really talk to as such, just be in social environments with. And so that was probably, probably the reason I enjoyed university, was because I actually managed to meet someone who actually I could connect with and be friends with. So
It was certainly much easier than school. People at university seemed to be much more open-minded as much as people at school eventually, were originally fine as children; willing to accept abnormality, then they sort of stopped when they became teenagers; learning to accept it so much. Once you get to university they seemed more willing to accept it once again. Which was certainly nice, but I guess they had a life full of things, and even if they had time for me, they didn’t. When you are in school you very much have to talk to your classmates, you’ve got to be around them. Whereas if someone didn’t like me at university they just, I just really wasn’t really part of their lives. So in that regard it’s much easier. it’s much easier to be I suppose a loner and be on your own at university, and equally so it’s much easier to bump into people who you might be able to connect with.

What did you study there?

Science communication. If youthat makes sense. Communicating science, sociology of science, history of science, cultural science, whatever that means. I will eventually specialise in philosophy of science which is what I’m currently doing now.

So you left university what did you do after that prior to getting a diagnose?

Well I left university and then went straight back to university and did my Masters and that was all good for about ten months or so. It was, I was doing something actually I was interested in and found that once I got to the level of postgraduate people were much more intellectual. The, I guess the only way you become postgraduate is if you are very intelligent, or you can get funding or you’re very committed and willing to work part time, which is what I did. And so in this regard I was able to connect with people in a way I’d never really done before, I actually had a situation whereby I’d be invited out socially to the pub and just go there and talk to people, granted I struggled, they did notice something was abnormal about me, but I don’t think they really cared that much. So that was all good.

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