A-Z

Parents of children on the Autism Spectrum

Difficulties in education; disliking school

Many of the children diagnosed with Asperger syndrome were in mainstream education and found the move from primary to secondary school very difficult. Parents said primary school was better suited to the children as they were in one classroom with one teacher. Secondary schools were often huge, bewildering environments for children who found it hard to manage classroom changes and numerous teachers.

Some children became very distressed about going to school. They would cry, cling on to their parents, run away, become ill or ‘school refusers’. As one mother said; “If you imagine you are scared of public speaking and you have to do it once you get very frightened, but for Callum it was going through something you hated every single day of your life”. Some parents' children were so tense throughout the school day, they would “explode” when they got home.

 

Liz’s son contains himself at school but has a whole day of tension and anxiety to release when...

Liz’s son contains himself at school but has a whole day of tension and anxiety to release when...

Age at interview: 45
Sex: Female
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I don’t think you can just separate school as a separate thing from home because they contain themselves a lot at school because they know they have peer pressure and they know they have got to kind of conform and in a way they want to have friends and they do want to conform but then when they go through that gate, they have a whole day long of tension and anxiety you know containment of behaviour thing and we get it full blast at home. And I think we need to kind of amalgamate the school and home a little bit more with these particular children, perhaps not so much the neuro-typical children but yes with these children. I think that is the whole thing with these kids is that you can’t look at health separate from education, separate from home. It has to be a whole holistic view and that is why it is still very separated.
 
You know the education would say this is not an education issue it is a health issue and health will say it is not…. And what I have suggested in my meetings is that we get together because if the child has got a diagnosis like this, which is a health problem, how is he going to access education to his full potential, not just scraping through, but to the full potential if they don’t have the right support and I think that is what is happening is that some people are just scraping through and they all pat themselves on the back and say, oh you know, he has got through but that is not good enough really. Because my son has got the ability of being some whacky scientist probably or go up on a rocket you know somewhere to Mars or whatever but he won’t do it if he doesn’t have that support in doing his O levels or GCSEs or whatever they are called and that is my continual fight.

Some parents said that the distress their children experienced was so severe that they threatened to commit suicide. One parent described her son as “suicidal and he just…he wouldn’t have been alive to be honest if I’d left him in school any longer”.

Some of the children’s difficulties with school related to their sensory sensitivities (see ‘Fears, anxieties, sensory issues and meltdowns’). They felt overwhelmed by the noises in the corridors and could not cope with the large crowds of children at school. Some children found it difficult to get themselves to the right classroom or turn up to class with the right equipment.

One parent described how valuable her son’s pastoral support was in his secondary school. He could talk to his SENCO (Special Educational Needs Co-ordinator) about any difficulties and she let him keep his belongings in her office which helped him organise himself during the school day.

Bullying
Many parents said that their children had been bullied at school, particularly after moving to secondary school. Many said their children were singled out because they were perceived to be different and did not have the resources to stand up to other children. As one mother said, “People don’t like people who aren’t normal if you see what I mean. They become frightened and so immediately there is a barrier, immediately.” The children were particularly vulnerable at break time and lunch time when their one to one support worker was not there.

 

Dot recounts an incident when her son was bullied in the mainstream school and how the teacher...

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Dot recounts an incident when her son was bullied in the mainstream school and how the teacher...

Age at interview: 48
Sex: Female
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A couple of months ago… a child in the unit will never go into mainstream on their own at first. There is a learning support with them and another child from the unit so they don’t feel the only one and him and another boy were in a classroom and the learning support was called away and basically it was an untrained teacher, the school is not one of the best shall we say and they have difficulty keeping staff.
 
And what sounded like a lot of disruption happened in the class. Somebody threw things at Joe and his friend and basically they got quite upset, the boys. The boys from the unit carry a card. Now Joe didn’t have his with him, but on it, it says ‘I can return to the unit, I have permission’ because if they can’t ask usually, they can’t put their hands up, they can’t say what they want, so they just show the card. But Joe didn’t have his. He got up and tried to leave the room and the new teacher made him sit back down again. And basically the lesson was disrupted for the rest of the time.
 
By the time the two boys got back to the unit they were very distressed and they couldn’t carry on with their lessons or their work. So the teacher and the staff calmed them down. But it is what she did after that; she made that teacher come into the unit and the headteacher and apologise to the two boys for making them sit there, when they were clearly upset. And she made sure that there was an assembly the day after where everybody was told about bullying and about picking on people just because they have got something different about them.
 
Then she made sure that the children who had targeted them, their parents were brought into the school and told that their children were doing things like that and finally she actually saw the children herself as well and said to them. “I hope you are going to come into the unit and see what we do in the unit.” You know so she tried to work with them so they wouldn’t do it again and that to me is going beyond your job, you know, she puts a lot of effort in to make sure they are accepted, that they can try things, that they are pushed but not pushed too much. She is absolutely fantastic but if, to be fair to teachers, if you were in a class with thirty children, which is the usual round here, you couldn’t do that, you couldn’t do it.
 

Carolann describes how “the social times that other children love” terrified her daughter.

Carolann describes how “the social times that other children love” terrified her daughter.

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When she got the diagnosis the lady, the pastoral head who we spoke to, said, “Oh yes, I think I have had heard of that.” But she didn’t really know what she was dealing with. I gave her as much literature as I could at that time and informed most of my friends that my daughter had this condition. The school made absolutely no attempt whatsoever to change anything. The fact that she should actually have had some form of learning support to help her. Intellectually, you see, she was fine and that is the only level on which they based any need for support. If you are intellectually able that is it. And of course she was because she went on to go to university. But it was all the social and pastoral stuff. She needed to have support in the playground, break times, the social times that other kids love as you know are the times that Asperger's people find the most terrifying, horrendous and so anxiety provoking. She would, she told me, go and hide in a cupboard because she was frightened to go out with the other children, well they weren’t children, they were teenagers by then. Who would bully her unmercifully.
 
And I remember her saying to me, she would go from group to group asking if she could be with them and they would say, you know, “Piss off. Go away. We don’t want you.” And this happened every single time. She found no group that would accept her. And yet she looked like them, she had the same … she did have the same interests. She was interested in you know, popular culture, music, clothes, fashion, all the things that Asperger’s aren’t supposed to do they did. In fact the more girls you speak to the more you will find they are actually very interested in that kind of thing, a lot of them. They are not all, you know, wearing brogues and straight hair and kind of traditional, classic, sort of dork picture you get of boffs, she wasn’t like that at all. And the school did actually tell me that they were going to tell the whole of Nita’s class that she had Asperger's syndrome, with her not being there. And she was taken off somewhere and this happened and contrary to what all the books say, it actually got worse. It didn’t make it better, it made it worse. Then Nita started getting remarks like, “Well we knew you were strange, now we know you are.” So having the label of Asperger's did not help her at all.

Some of the parents described how their children felt bullied because they were overly sensitive to injustices (seeCommunication). One mother said her son began to experience social difficulties with his peer group when he reached the age of about seven. “He felt bullied. They felt he was just odd. They would jostle him and he would fight back”.

A few parents felt that teachers who did not understand autism had bullied their children. A teacher at a private school had said to one boy's mother' “I know Luke has autism, but as far as I’m concerned he can leave it at the doorstep when he comes into my classroom because I only teach maths”. Another said a group of women students continued to bully her daughter even when she was at university (see ‘Further education’).

Teacher training
Many parents we interviewed felt that the teachers or teaching assistants at their children’s mainstream schools lacked appropriate training to be able to understand their children. They talked about how it was “pot luck” to get an assistant or teacher who had some understanding of autism and how this could change every year. As one parent described: “It felt like it didn’t matter if he learned anything as long as he was quiet but if he was disruptive in class then it wasn’t far from exclusion very quickly”.

 

Paula thinks it is difficult for teachers to be able to teach a class of thirty children with...

Paula thinks it is difficult for teachers to be able to teach a class of thirty children with...

Age at interview: 40
Sex: Female
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But with David it didn’t really help him a great deal. I think because again he is so nearly normal and probably there are so many millions of kids that have Asperger's and don’t know it or are on the spectrum and don’t really know it. They are being taught by teachers who don’t really have a good enough grasp of special needs and it is difficult for the teachers, you know if you train as a teacher and I trained as teacher a couple of years ago and in a class of 30 kids you might have one kid with Downs Syndrome, two with dyslexia, one with speech and language delay. I mean there are so many things, and you need to know so many things about them that it is difficult to get your head round, especially if you have got a bit of a smart arse kid, who things he knows anything and everything and puts his hand up every five minutes.
 
You know what David needs is to be sat under a teacher’s nose on his own with a lump of blue tack to fiddle with and then he gets on and does his work, but you can do as many round robins with the teachers as you like, but the information isn’t getting through and there is always problems with behaviour.
 

Dot describes how having teachers who want to help are “like gold” and how little understanding...

Dot describes how having teachers who want to help are “like gold” and how little understanding...

Age at interview: 48
Sex: Female
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All the legislation talks about partnership with schools, but a lot of teachers I spoke to saw it as interference. Partnership seemed to be if you agreed with what the teachers were saying but if you gave them work, if you like, if you said to them for example, “I want a home school book. I need to know what is happening in school. Is he learning anything? Have there been any incidents?” it’s another job. Now teachers who want to help you are like gold and you know, and Joe was lucky, he had a couple of teachers who were like that. But you are never safe because when they move the next year you don’t know what that teachers going to be like. Some people, some teaches have been trained for years, some teachers have been trained for a short time. You can’t go by that. It is attitude. It is will they work with you? Will they work with the child? It is not even class sizes because we have got people who … here it is rural, we have got people who are in very small village schools who still can’t get any help, even when they are small class sizes because basically they don’t like the behaviour of the child and they can’t see past the behaviour of the child.

 
Now since I have been on the group I have been on committees, where I have seen teachers in a different role, headteachers. You get some headteachers who are absolutely dreading anybody with Asperger's going into the classroom. And then you get teachers who learn what it is like. I mean in my own son’s school when he went to upper school when he was 13, I went to a parents evening. I spoke to his English teacher and she said to me, oh she said “When I heard I was getting three of them, in the class. I thought oh my goodness,” because the unit hadn’t been in the school very long and then three of boys, one of them including my son was good enough for English and she said, “I was really worried. I didn’t now what they would be doing. Whether they would be throwing chairs around the room. What they would be doing. And do you know,” she said, “I couldn’t believe it. They are the best well behaved boys in the class.”
 

Steven thinks a lot of opportunities for children are being missed because teachers lack...

Steven thinks a lot of opportunities for children are being missed because teachers lack...

Age at interview: 48
Sex: Male
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I don’t think, I think the school itself needs, they need, I think they actually feel that they are providing for him. But the provision is not there and I think unless you are a parent or unless you are a person with AS that knows what kind of strategies should be in place that obviously aren’t in place and there is no training for the teachers as such as yet. There is no, they no inset training which I think basically consists of a six minute video which really my son could do that himself really. I think there is lots of… there is a lack of understanding. I do appreciate that teachers are busy and they have got lots of things to do but I feel that ideally if teachers were to be more supportive and schools to be more supportive of the actual LSA’s which are the learning support assistants or the TA’s the teaching assistants. And they were given more responsibility and they were looked on more favourably as being the people that do know they could share that extra burden I suppose, if you want to call it a burden, of people with special educational needs, not necessarily just autism or Asperger's, but special needs in general and that the workload could be shared and the teachers could probably have a better experience.
 
I know it is difficult but there is a big difference between wanting to learn something and being made to learn something. You can’t make anybody learn anything but if that is how they are told that their day is going to be. That they have to learn about autism to carry on I don’t think they will want to do it. But if you make them want to be able to... and if a young child with autism, let’s say did an amazing an amazing piece of work or did sort of level pi let’s say for argument’s sake they did pi to 250 which for a little kiddie would be quite good, considering that most people don’t know it up to ten. If they did it to 250 then the teacher would be the first one to say oh I have got this little boy that can do or little girl that can do pi to 250. He is fantastic. And he has got Asperger's syndrome and blah blah blah but if the child doesn’t feel comfortable enough to do pi to 250 although he is probably able to go to more than 250 but because of the awareness the teacher is not bothered so there is lots of opportunities missed I think for people on the spectrum, kids, and the teachers are actually missing out as well, because of the lack of awareness. I think awareness needs to be promoted a lot more. And the fact that like you can’t catch Asperger's syndrome it is something that you have already got. So they can talk to kids about things.
 

Jane’s son got into difficulties at school when the teacher began to find him precocious.

Jane’s son got into difficulties at school when the teacher began to find him precocious.

Age at interview: 47
Sex: Female
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That was all okay until the age of about six or seven when he started questioning the teachers and he had a teacher…. He went into a school, in to a new year, where he had a very traditional teacher who didn’t like his questioning style. It also emerged that he was very musical and he taught himself to play the keyboard at the age of four, following the keyboard books and he could play the recorder and the teacher didn’t like the fact that he was questioning, and I think she found him precocious and she tried to conform and make him... control him and it all went down hill from there. Whenever any one expected him to follow their behaviours rather than motivate by the back door, which I had found tremendously easy, we started having trouble.
 
When he started at the age of 7, or when the other children at the age of 7 started trying to socialise with him and he couldn’t or wouldn’t, I am still wondering which one is which. We started to have troubles with his peer group. He felt bullied. They felt he was just odd. They would jostle him and he would fight back. Between the ages of 7 and 10 I now know that he has overactive moro reflex which is the startle reflex. And I also know that he is hypersensitive to sounds and tastes and touch. And yet also his physical ability is confounded by the fact that he is mis-wired, so he does things backwards and he doesn’t do things like balance naturally. He has to learn them.
 
So with his tennis and swimming he will do exactly as the coach tells. So having a really good coach who can articulate what has to be done and tell him exactly to do with his limbs is brilliant. He will practice, and practice and practice until he does it but if anybody is ambiguous with him he has no idea.
 

Daniel says there is no such condition as ‘special needs’ and teaching children with autism need...

Daniel says there is no such condition as ‘special needs’ and teaching children with autism need...

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Teachers don’t know – special needs teachers. That is the other thing. Special needs teachers, okay. “I can look after your son, I am special needs trained.” And you say to them, “Excuse me there is no such condition. There is no such condition. No one was ever diagnosed as having special needs. You cannot be special needs trained and be able to deal with hyperlexia. Are you hyperlexia trained?” “What is that? I have never heard of it. But I am special needs trained so I will understand every thing.” They don’t. There isn’t a condition you think forget this idea that special needs was a condition.
 
In fact that phrase was invented, I mentioned early on, Mary Warnock she invented the phrase ‘special needs’ and she said it wasn’t meant to mean that. It was meant to mean that everyone had individual needs, not that there was a group of people that all had the same condition that was called ‘special needs’ and we will have people that were trained to deal with that condition. If they could rid of all this special needs and start listening to the individuals they could do it a lot more cheaply.
 
I did a radio interview recently and they asked me that question about, something about money, and I said, “Well the effect that I have had on Jonathan is absolutely unbelievable. He has made so much progress. I have not heard of any other autistic person making as much progress as Jonathan has. I am not saying there aren’t any. I have not heard of any because I have dedicated my life for the last four years to working on him and thinking about what autistic people need, and I have made immense progress” and I told them on the radio, I said, “We have done all this in poverty.” And I think the question was, “Wouldn’t it be incredibly expensive, or prohibitively expensive to meet the needs of individual children?” I said, “I have done it in poverty. It is about getting it right for the child. It is not about how much money you spend.” And I think that is a crucial issue, very crucial.

Existing staff training provision was challenged by parents who felt that it was not possible to gain sufficient understanding in a one day course on ‘special needs’. One parent suggested that it was not just the teaching staff who should be trained but all school staff including administrative and catering staff because they would be interacting with the children too.

 

Daniel says there is no such condition as ‘special needs’ and teaching children with autism need...

Daniel says there is no such condition as ‘special needs’ and teaching children with autism need...

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Teachers don’t know – special needs teachers. That is the other thing. Special needs teachers, okay. “I can look after your son, I am special needs trained.” And you say to them, “Excuse me there is no such condition. There is no such condition. No one was ever diagnosed as having special needs. You cannot be special needs trained and be able to deal with hyperlexia. Are you hyperlexia trained?” “What is that? I have never heard of it. But I am special needs trained so I will understand every thing.” They don’t. There isn’t a condition you think forget this idea that special needs was a condition.
 
In fact that phrase was invented, I mentioned early on, Mary Warnock she invented the phrase ‘special needs’ and she said it wasn’t meant to mean that. It was meant to mean that everyone had individual needs, not that there was a group of people that all had the same condition that was called ‘special needs’ and we will have people that were trained to deal with that condition. If they could rid of all this special needs and start listening to the individuals they could do it a lot more cheaply.
 
I did a radio interview recently and they asked me that question about, something about money, and I said, “Well the effect that I have had on Jonathan is absolutely unbelievable. He has made so much progress. I have not heard of any other autistic person making as much progress as Jonathan has. I am not saying there aren’t any. I have not heard of any because I have dedicated my life for the last four years to working on him and thinking about what autistic people need, and I have made immense progress” and I told them on the radio, I said, “We have done all this in poverty.” And I think the question was, “Wouldn’t it be incredibly expensive, or prohibitively expensive to meet the needs of individual children?” I said, “I have done it in poverty. It is about getting it right for the child. It is not about how much money you spend.” And I think that is a crucial issue, very crucial.

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Last reviewed July 2017.

Last updated November 2010.

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