A-Z

Life on the Autism Spectrum

Autism & going to school

People looked back at their school days and talked about their experiences which were often before they had been diagnosed. They attended a mix of mainstream schools, special schools, boarding school and private schools. One person was home schooled from the age of 13 (see Parents of Children with Autism, Interview 31)
 
“I kept a pretty low profile”
Many people did not enjoy school; they didn’t have many friends and several talked about being bullied. One man said, “I was bullied a lot. Everyday actually. I think it was because I was slightly different and they thought ‘Oh, he’s an easy target’”. Another talked about how he avoided bullying by staying in the background; “That was how I negotiated school, I suppose, I kept a pretty low profile. I was eccentric essentially.” Paul I described how he was easy to bully as a child; “You could set me up very easily. And I’d be the last one to get it.” 
 
Keeping quiet and withdrawn was a strategy several people used. Tim talked about managing to get into a small bunch of “misfits” which helped him get through school. 

 

Steve was recently contacted by someone who bullied him at school.

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Steve was recently contacted by someone who bullied him at school.

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It was like most children’s really. I got some good parents. Quite supportive. Used to be on my own quite a lot, lining up soldiers, like everybody does but more or less, I didn’t have some very good experiences at school. I didn’t like school very much. I was almost the odd one out. I were the clown to try and fit in. But not really, not very good. No.
 
I had somebody from school contact me a while ago who who did apologise for being like he was with me at school. And I thought he was going to die. So it was like a last I will clear my conscious thing. So I asked him if that was the case and not to contact me again. So that wasn’t very good. Although it is probably good because he was trying to realise what a nasty person he was. But I think people realise when they get older that they, I think bullies never really change. I think they just change to the same really.
 

Debbie describes her schooling from primary school through to secondary school.

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Debbie describes her schooling from primary school through to secondary school.

Age at interview: 44
Sex: Female
Age at diagnosis: 35
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I first went to playschool when I was three and it was looking as though I would have to leave, because they couldn’t cope with me. I was having problems. I was just crying and screamed the whole place down for about a fortnight but they did have another assistant and because she could offer me the one to one attention I needed I was allowed to stay. It was all right.
 
And then my first day at infant school I didn’t want to go and my sister had to drag me there, you know. And that was, I had some really nice teachers there. They sort of, they made observations that I did have problems, you know, and they sort of dealt with me in a really good way because even then it wasn’t really known, Asperger's Syndrome. But as I say the headmistress was a bit of a strange woman. I don’t think anybody liked her, was scared of her. I was scared of her and she didn’t really understand me. You know there were times when, one time I wouldn’t put me hands together or close me eyes in the hall and then she made everybody, she made me do it in front of everybody and it wasn’t very nice. And then there was one time when, if you were a server for the food, you had to eat all of your food, regardless of whether you liked it or not, that sort of thing. And – I think she mentioned to my mum – autism and I also had to go to her for writing lessons. I was really scared of it.
 
The junior school was a lot better. In fact I had some really good times there and I really enjoyed it. But I remember one of the, one of my teachers in the infants said to my mum, “She is going to have to cut the apron strings. Otherwise she won’t cope with junior school.” So they were really, you know, dealt with me really well. 
 
The bullying sort of started really in the high school. You know I was bullied quite a bit because I was different but I had a really good best friend who used to stick up for myself you know, so I some how survived it.
 

Catherine thought things would get better at secondary school but the teasing carried on.

Catherine thought things would get better at secondary school but the teasing carried on.

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And then when I moved up to secondary school, I thought, oh you know, it will be good, because, you know, there won’t be the same people and so they won’t know that I am the one that gets teased. But it just carried on basically, you know, with more people. Just kind of same reasons really. I was just really painfully shy, and for the first three years at least, I didn’t really have any friends. And I just used to kind of… I mean like the only things I really liked were English lessons, but I hated it when we had to read out of the books, you know, I just couldn’t do it.
 

Sam 'hated school' and around the age of 15 his ability to cope declined 'pretty quickly'.

Sam 'hated school' and around the age of 15 his ability to cope declined 'pretty quickly'.

Age at interview: 26
Sex: Male
Age at diagnosis: 24
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I think my ability to hold together conversations, seemed to plummet at this point, I don’t really know why. It became much more complicated for me. That’s quite speculative, but suffice to say the level of pressure I felt being in a conversation increased substantially perhaps, I suppose children accept abnormality much better when they’re younger, but when you get to sort of say the age of 15, people are starting to develop individuality and you know, a lot of changes going on and that perhaps demarcated me. And for whatever reason it just became very difficult for me to talk to people, to the point whereby I’d often get these really very, very bad headaches in school. I would just sit there and as soon as the class started, I’d just get this really bad headache and couldn’t concentrate.

A couple of women recalled being “figures of fun” at school but didn’t feel they were bullied.

Some people recalled difficulties concentrating. Mary said that she wasn’t expected to do well at GCSE level because she would only pay attention in class if she was interested in the topic. A couple of people didn’t understand that teachers were authority figures; “I didn’t understand why I had to listen to them and obey them. It didn’t make any sense to me”. A few people discussed how they did better at school once they got to A levels because then were doing subjects they liked.

 

Mary has discovered that she really enjoys learning but didn't like the form of working at school.

Mary has discovered that she really enjoys learning but didn't like the form of working at school.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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But, you see, I was pleased and because I did well at GCSEs, I decided to stay on at school to do A levels. But yes, and I mean I did well in A levels as well and I enjoyed A levels, because I actually discovered when I started to do A levels that because I chose the subjects and the only subjects I was doing actually learning was fun. So before… I mean I do like learning and stuff. It’s just I prefer doing it on my own. I don’t like being told what to learn because if I’m not interested in it, I don’t want to do it. So but yes, A levels I did English, history and theology, and I did well in those. I got two As and a B. So then I went to university, at [town name] university, and I did history and that went really well. I mean I got a 2'1 in that, so I was pleased with that. 
 
But I think, I mean since then I mean I’ve just discovered that I really enjoy learning. It’s just at school I wasn’t… I think it’s just different at school because you have to work in groups, and there was really low expectations about what I could do. I just wasn’t… school just didn’t suit me. It wasn’t till I got into A levels that I started to actually find learning fun. 
 
 

Simon thinks that teachers assume you can't do anything, rather than acknowledging you find...

Simon thinks that teachers assume you can't do anything, rather than acknowledging you find...

Age at interview: 22
Sex: Male
Age at diagnosis: 5
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Because there’s nothing more wrong than sometimes at school that teachers sort of, they see that something is wrong with you, and they immediately assume that you can’t do anything. That you can’t do that, you can’t do this, you can’t do that, and that’s a completely wrong perspective for going about it. Being autistic just means I find certain things harder than other people would. It doesn’t necessarily mean I cannot do it. It just will take me a longer process to sort of be able to do that certain thing. But mostly it’s to do with repetition. I have to repeat something consistently for me to be able to do it then afterwards. Just do it, just like that. 

 

When Paul I was seven, he started dissociating at school.

When Paul I was seven, he started dissociating at school.

Age at interview: 29
Sex: Male
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And about 7 years old I started dissociating, which is, it goes without question, doesn't it. It was a, it was a coping mechanism really for that kind of interaction.

What do you mean by associating?

Dissociating.

Can you explain what you mean by that?

Well, it's a mental health condition where you take yourself away. I mean normal dissociation is what we all do, day-dreaming. And that can last for minutes and then you're back in the room. But what I was doing was slowly that was becoming more than minutes. That was becoming, you know, five minutes, ten minutes, hours. Just completely shutting off, as a way of coping with - I suppose in some ways, a perceived trauma, of…of being, you know, just constantly criticised. But one learns. And that, I don't feel sorry for myself, and I don't consider myself a victim, it just happened. And the only way one can learn from things is by understanding what went wrong, and then trying to make amends to it. So - and that's for any child, it's not just a child with a disability. Any child. You wouldn't do that to any child.  And if you can learn from that, you know, 'is this really okay? Is this boy going to remember this in twenty years’ time, and talk about it? What can we learn about it?' 

So, from that perspective - I don't think they were trying to harm me. I don't even think they were trying to bully me. I just think they're trying to understand me. 
 

Paul I developed somatization disorder in Year 7.

Paul I developed somatization disorder in Year 7.

Age at interview: 29
Sex: Male
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I mean, in Year 7 I developed a condition called somatization disorder. Which is where the person has like a pseudo pain, that they believe is real. And they get distressed. Of course what this was, was emotional pain coming out through and I used to go into reception and I used to say, you know, "I've got tummy ache, I've got a toothache, I've got a headache." And I'd cry. But what I was really saying was is "I'm not happy at this point." And I still get it now, with emotional trauma. My dog died not that long ago, about a week ago, and I got a pain down my arm and I got a pain in my teeth. It's a pseudo pain. It's somatization. It's amplification. It's how my emotions come out. And the only problem was is that obviously teachers talked about this behaviour. And I can always remember the science teacher, you know, he was getting ready to do an experiment in the middle of the room. And it, it's almost like something out of some sort of BBC comedy sketch. He said "Paul, the boy who's always crying in reception, go and get that flask." Brilliant. That's gonna do my self-esteem the world of good. And he had this smirk on his face. He knew what, I mean, this is a bloke, he was a junior teacher.  
Being very good at some subjects and very poor at others, was an experience for a few people.
 

John was 'very good at English and Maths and pretty useless at everything else'.

John was 'very good at English and Maths and pretty useless at everything else'.

Age at interview: 65
Sex: Male
Age at diagnosis: 62
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I was very good at English and French, pretty useless at everything, well mediocre at everything else. Maths, absolutely terrible. I was always very bad at maths, and I still am. And I think it is because you can’t actually tell whether you are right or wrong. If I write an essay or write a letter, or write a piece, I can tell whether the words are right or wrong. If you give me a column of figures to add up, just ask me to add them up, I can’t tell on sight whether they are right or wrong and it is something to do with that. It is not as people will say it is obvious. People say mathematics is logical. I can remember trying to do something in maths which was an awful thing. I think it was something to do with decimals or something that you sort of A + B brackets squared over H3T equals what is it? And there is a whole lot of x’s and x’s and As and Bs go on the blackboard and I can always remember the teacher said to me, “Because it is a negative we turn it all upside down.” What is logical about that? [laughs] You know. I just couldn’t, I don’t know, it just didn’t register with me at all.
 
On the other hand French and English I always liked the idea of English, and the fluency of it. The French was the same. I noticed at school I never liked sport and it is something to do with, I think it was George Orwell who said, “Football was a war, without bullets.” Wasn’t it? And it seems something to do with the conflict. It is the idea of confrontation, of physical confrontation. I don’t like being touched. I don’t like physical confrontation. I don’t like confrontation generally I think it is pretty fair to say.
 

Mary was called 'an enigma' at school because the teachers couldn't understand why she was so...

Mary was called 'an enigma' at school because the teachers couldn't understand why she was so...

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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I mean when I was at primary school I did receive a statement, what is called a Statement of Special Educational Needs in year 6. But that was mainly listing things like discrepancies with verbal and performance IQ. So they did an IQ test, and the verbal one was high but the performance one was low. And they couldn’t work out why that was. So they called me an enigma, because they just didn’t know what it was, you know, what the reasons were, or the reasons why I was good in certain subjects and then not so good in others. 

So I mean I was good, you know, in certain areas of English, like spelling and that sort of thing, and writing. But then with comprehension I wasn’t so good, I mean fiction. And I was really poor at maths as well. And also things like practical skills, visual, spatial skills were very low. I mean my ability in that area was very low. But I didn’t, as I say they didn’t actually diagnose me with anything then. So I was quite, I mean I’ve read the statement since, and I’m quite surprised why they didn’t, but I don’t think much was known about Asperger's back’s then. 

 

 

“I was basically considered a naughty boy”
Part of the difficulty people had at school was to do with the lack of appropriate support. Several people had attended school at a time when the diagnosis of Asperger syndrome was rarely recognised. Teachers thought they were lazy or badly behaved or, as one person said; “wilful and naughty”. Miranda said that the teachers thought she was “stupid and selfish for holding the bright ones back”. Now she has returned to education in her 40s, she is realising her potential with the appropriate support. While having a diagnosis did not always lead to appropriate support, Alex feels “very lucky” to have been diagnosed at a very young age because she went through school with full time one to one support.
 
Other people discussed the things they found difficult about school or the things that could have made a difference to them. Some felt that they didn’t get on at school until they had been 'statemented' (received a statement of special educational needs) and received the appropriate support.

 

Luke talks about the things that could have helped him at school.

Luke talks about the things that could have helped him at school.

Age at interview: 18
Sex: Male
Age at diagnosis: 8
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What could the teachers have done? What do you think, looking back, what would have helped you in school?

 

Not being so bloody awkward. [laughs] Things like, say my little brother’s in school at the moment. He is ADHD and like, to help him concentrate he likes to like you know mess with something, I don’t know, like a piece of string or a pen or something like that. And you know, if it is something like a piece of string or a piece of elastic then he won’t be disrupting anyone, but the teachers take it off him anyway, because you know it is not normal. I swear some of the teachers are the most AS people that I know, it is all so, so inflexible. You know everyone has to be the same and do the same and if you change that then they throw a little hissy fit. So I think just be a bit more, like if the teachers were a bit more accommodating that would have helped a lot.
 
I think my art teacher, every time I went out to speak to like my friends or something he would phone up, he would phone up mum and say, “Oh well, Luke is outside speaking.” Like you know, “He is speaking to someone.” And mum would just go, “So?” And he would go, “Ah, he is cured.” And he just really didn’t get it. But just things like, you know, if someone say needs to have the homework written on the board and say for it to be wrote at the start, sorry not the start of the lesson, but say ten minutes before the lesson finishes rather than five minutes when the bell has just gone because he needs to concentrate on that, you know, to be able to do things like that without being so inflexible all the time, that would have helped a lot. Hm.
 

Duncan who went to a mainstream school explains how they supported him.

Duncan who went to a mainstream school explains how they supported him.

Age at interview: 17
Sex: Male
Age at diagnosis: 13
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What sort of support did they give you at this school that helped?

 

Well I had speech and language therapy lessons or I would go in once a week, well the person would be in school and I would have like a lunch time session with them once a week and I would go in one on one and we would talk about homework and sort of social situations and stuff that had happened during the week and then another thing was I would have someone who would help me with the school work in the lessons, they would help me with homework and writing and sort of making sure that everything was consolidated, I think, is the word, into easier sort of to remember notes, and I had that for the whole time I was there. Maybe it was a different session to the speech and language therapy and it would be in the morning before assembly or it would be like a, it would be a single period maybe once or twice a week. 
 
And then there would be, and then for exams I would have someone to write for me, and someone.. someone to make sure that everything was correct, so the scribe would write for me and check things over with me and let me check my grammar, and I think that during my exams, helped me become more sort of vocal and I guess that is maybe where it came from. I mean I guess it is also partly because they were small classes. I mean the maximum class was about 12 during GCSE and then it dropped down to about four for AS. So I mean it was, you know, you got a lot of time with teachers and everything and …

The transition to secondary school was difficult for some. As Christopher said; “It was like trying to step over the Grand Canyon. Everything was so different, bigger and not nicer”. Christopher had difficult experiences at secondary school. The school didn’t really acknowledge his diagnosis or offer him support when he was bullied. He said, “I was fine with the teachers and the lessons. I just didn’t like the 900 or so other people who were there and I think, to be honest, that feeling was reciprocated”.

 

Duncan found the transition between schools and changing timetables difficult.

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Duncan found the transition between schools and changing timetables difficult.

Age at interview: 17
Sex: Male
Age at diagnosis: 13
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Change. I don’t particularly like, well especially if it is sudden. I mean if I mean I didn’t like changing schools in the beginning but I sort of gradually got used to it, as the summer holiday went on sort of, I thought I sort of mulled it over in my mind, and then sort of thought, oh I guess this good idea. I don’t know. I find it easier to change gradually rather than rapidly, so you know, sort of changing school schedules between school years sort of, rather than one week being different from the next or one day being different from the next. I find it easier to maybe over a period of six weeks, you know, like a school term, and then, and then may be change it after a term, and then again, more, you know, have the same sort of structure for the whole school year and then change it the next year. I guess changes are sometimes okay.

One person went to a specialist base for children with Asperger syndrome attached to a mainstream school and this had a very positive effect on his life;
 

James describes his schooling at the specialist base.

James describes his schooling at the specialist base.

Age at interview: 22
Sex: Male
Age at diagnosis: 12
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I became, at that stage like I say I was pretty cynical but we found out about a secondary base that like in a school not too far away from [town] and that was you know a mainstream based, like a base within a mainstream secondary school and there was a like sort of support base for children with quite high functioning autism and Asperger's syndrome and [5 sec pause] my parents were really keen for me to go, but I was kind of quite cynical. I just thought oh this is just going to be another idea, another flash in the pan and it isn’t going to really work.
 
 I think my parents were quite worried about me at that stage as to what I was going to do and things like that because you know theoretically that could have been, you know, theoretically I was almost at the stage where I was thinking about doing something which I really shouldn’t have been thinking about doing. But I went to this base and for the first year I didn’t really go to any mainstream classes or any you know any maths or that, and for that reason they kept me back here just to basically ensure that [coughs], the transition from school to school was as stress free as possible and I could ease into, and get a secondary school environment.
 
And I was quite fortunate in the fact it was one to one staff, staff to pupil ratio. That was excellent, that was excellent for me. You know they started working on things like social skills and all these things that were you know associated with Asperger's syndrome, but also the other thing that you know when people look at the core symptoms of Asperger's syndrome, you know, the triad and things like that, its all very well, it tells you a little bit but it doesn’t really tell you anything about the other problems, like the self esteem and all these types of things and they worked really hard in building my self esteem and making me confident enough so that I could go into these classes and things and when I first went in I was may be seven [sniff] or eight months into the base and they were sort of like James you have got to start thinking about going into classes now. And I tried everything possible to avoid it.
 
But they just started working this tactic where they made life as boring as possible so I really eventually went into classes and I remember, I just remember the first day there when I went in, I was like shaking and almost in tears because I was really nervous about the first time I went to a class but I did it and I stayed there for the whole time [sniff] and you know it is quite interesting because you are a first year and everyone, everyone sorts of looks at you around, you are this new boy and they all know I was from the base so it was quite difficult for them. It is quite strange for them, so they are all looking at you, you know like basically you are a bit of a zoo animal because they are quite, because they quite confused really and they don’t really understand about Asperger's syndrome or what autism is really in essence.
 
So that was quite a big point and then gradually basically the classes built up and [sniff] I went to English, and science, basically it started building up until I was at about 75% timetable, which was excellent for me, which was perfect for me and there was enough time for you know for a chill out thing in the base so that I didn’t ever become too stressed out. So so that was good. You know, I really, you know I really thought that … I finally felt that we were making progress after the diagnosis but you know. 
 
I mean that is not to say there wasn’t a good few ups and downs through the whole thing and there were times where I … at one time I went to go a 100% into classes and it was you know, I had to sort of take a backward step and things
 

James summarises the ways in which the base helped him.

James summarises the ways in which the base helped him.

Age at interview: 22
Sex: Male
Age at diagnosis: 12
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Can you sort of sum up what it was about the base that allowed you to obviously make the progress you have made. What was it they actually let you do or …?

 

I suppose they call it cognitive behavioural therapy. Just sort of stuff like learning social skills, you know, really working, you know really working quite hard on the social skills aspect and the organisation, [5 sec pause] really working on that sort of thing.   Self esteem, I would probably say that’s the three things; self esteem, organisation, and social skills. Really, [coughs] making you feel that you could go out and have the [coughs] confidence to speak to people and   just providing support day to day. Making like, knowing that some days like if it was too stressful to go to classes then they would understand that and they’ve got quiet rooms, little rooms forr you to go and work basically if you ever get stressed and it becomes a bit too much. You know if the environment gets too much you can go to a quiet room where you can calm down and sort of destress so to speak
 
And that was massive for you know, for myself and many other people in the base that here we have an opportunity. I look at a lot of people in the base and I look at myself and I know that is a massive factor. Like constantly like, well I know all bases aren’t perfect but I know looking at the place that I went to that they were you know, doubtlessly always looking for things for specific help for people with autism and Asperger's syndrome and ways to improve things, looking at the environment, the   classrooms were painted with non-reflective paint, blinds to ensure there was no reflection through the window, not put ticking clocks in, and little things, using carpets so there is no reflection. And now even I came back and visited recently and now there’s things like exercise equipment in the base and they have got a Nintendo wii to help people exercise and keep them moving and improve their coordination.
 
So just things that are just looking at, I suppose it is just relentless, the base, what they do is just well for me the relevance is they look at every aspect and try to see what there is to improve you know. So I mean those specific things, even things down to looking at diet and I don’t mean that in the gluten free sense, like I drank cans of Iron Bru every lunchtime, you know, sort of looking at every little possibility like what is affecting my behaviour so they made me come off Iron Bru, well it turned out it wasn’t due to the Iron Bru but that’s just an example of, you know, of really looking at everything you know, just addressing your every need and it was just that, you see that compared to the academy, not that the academy is bad, just that they didn’t really have the opportunity or the resources to help in the same way the base did and I think that is probably what made the base so good.


 

 

Last reviewed February 2020.
Last updated July 2016.

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