Parents talked about how they had decided where to send their child/ren to school. They considered a range of different schools including mainstream primary and secondary schools, special schools, specialist units, private and residential schools. A few had chosen to educate their children at home. For many parents it had been difficult to find a school that could give their child/ren the right support at different stages of his/her development. Some of the children were very intelligent, for example, but had difficulties with social skills and sensory sensitivities which made large secondary schools unsuitable for them; others at the more severe end of spectrum started in special schools at primary school age and continued in this system through their school years.
Choosing a suitable school is an important decision for most parents. Those we interviewed had visited different schools, imagining their children in the different settings. Even if a child has a statement of special needs they may not get a place at the school of their choice, parents can only give a preference. Some parents felt that no appropriate schools were available and they worried about their children’s education.
Overall, parents whose children were in special schools talked positively about their children’s experiences of education, even though a few parents had felt upset when they realised that their children would not be able to cope in mainstream education. The children were in a mix of schools for moderate learning difficulties or severe learning disabilities.
Nicki, a local authority employee, and Mark, a full time carer, have two children; Tyler aged six and Emma aged five. Ethnic background/nationality: White British
Nicki' Then we got, because we had a diagnosis, so before Tyler went to school he had a statement which was fantastic. Because he was at our local pre-school at the time the natural progression there would have been for him to go to the school that was linked to that pre-school. So both of us took it upon ourselves to go and look at a lot of schools in the area. That particular school that he was supposed to go to, or that is the natural progression of things has a completely open playground. They don’t have a special needs unit until the child reaches 7 and there are at least 31 in a class. So knowing our son he would have been gone playtime he would have run, he would have thought it was have great fun and he wouldn’t have looked back and he would have been lost. He would have been sat disrupting all the other kids, not really knowing what was going on, wandering around thinking oh this is boring. It would have been awful. So we went to visit a number of schools didn’t we?
Nicki' Including the special school that is actually quite close to us but the location of it is irrelevant because they get transport anyway. But we went to look at a school called [school]…. They specialise they just don’t have children with ASD but it is primarily children with ASD and we went to have a look round and we stayed for a very long time didn’t we.
Nicki' And we were overwhelmed.
Mark' The minute we walked in there we knew that that was the right place for Tyler. It was …
Nicki' And they understood …
Mark' I think that was our main concern, safety, wasn’t it?
Nicki' Absolutely. And you know we didn’t want him to be discriminated against or ostracised or any of those things and this school demonstrated absolute understanding of ASD and the way in which he would behave.
The class sizes are very small. There is only 8 in a class and that is with a teacher and two or three TA’s in every class. They do things, the sensory things as well. So they have bubble rooms, and they take them swimming to the hydro-therapy pool and they take them horse riding and all these extra things that he wouldn’t have got in a mainstream school. The other concern about mainstream is that he would have dedicated time. He would have a TA dedicated to him. The maximum he would have been able to get would have been four hours a day, which means that it wouldn’t be all day. So for the rest of that he would have been disruptive, wandering off, all those things I mentioned previously.
And the other thing is with TA’s and this is a purely personal view and I am sure there are fantastic TA’s out there, but it really is pot luck. You may be lucky enough to have a TA who has just followed a child who has just followed a child with ASD right the way through school and has a lot of experience, but you may also get a TA who is brand new to autism and almost learns based on your child. And I didn’t want my child to be the subject of someone’s learning. I wanted experience for him because he only gets one chance at being a child and having an education. So that was really important.
So we felt very comfortable the special school. We went back again and took Tyler with us and he loved it. So when the decision came it had to go to a panel to decide which school he went to Mark and I actually sat in the building where they made the decision and asked the question, “What happens if we don’t get the school
Age at interview:
Mary-Anne, a full time carer, lives with her son who is 11 years old. Ethnic background/nationality: White other.
But the doctor who diagnosed him was very good because for a long time well at school when they first spoke to me, the SENCO first approached me and said, you know, perhaps I should be looking for a special school for Arthur to go to. I was completely against that, I was devastated. I just burst into tears, I was like, “No, no,” you know, because I kind of had this idea in my mind that if he just had all the right support and everything Arthur would become neurotypical suddenly. You know that all of the problems would go away and so I thought well if I let him go to a special school then later on when he applies for a job and they see that he has been to special school, that would stigmatise him and take you know away any chances. So it was kind of like I wasn’t accepting that this is a lifelong, these are lifelong problems that Arthur has got and you know, just because he is getting all the right support and everything it doesn’t, it means that life will be easier for him and everything, but it doesn’t mean that the problems will go away, you know [laughs]. So I was very anti him going to a special school initially.
Whereas at the special school he is at the teachers understand and they can tell the difference between what is just normal naughty behaviour and what is part of his condition. They also have higher expectations in the right areas. You know what I mean? They know what he can and can’t do, what he can and can’t control and it tends in the main stream school I think because the teacher doesn’t really understand and they are trying to do their best, sometimes they let them get away with things that they shouldn’t but then be too hard on things that they shouldn’t be hard on, you know. So whereas at a special school they said, like for Arthur, one of his first targets in the special school was to be able to remain in his seat for the whole of a lesson and that needed to be targeted but in the right way.
If you try and do that in a mainstream school and you have got you know 20 other kids or whatever, even with a learning support assistant, you can’t really target that appropriately, whereas if you have got the small classroom and that, it is much easier and it can be done in a way that doesn’t show him up in front of the other kids, you know, because all of the kids in the special school have got their little targets and Arthur’s really, you know, yes he is really a lot happier and he is socialising more then I think he would have ever been able to in a mainstream school because I think the other kids wouldn’t want to socialise with him, especially as they got older.
I could see the difference coming now he was in year three. So he was seven, going on eight and the kids were starting to make little cliques and starting to … you know, and they were all into this and that, that Arthur wasn’t and you know and so for Arthur’s, Arthur’s socialisation it was better for him to be in a school where kids would want to socialise with him, you know.
Parents valued special schools because of small classes, secure environments, and teachers who understood their children and were trained to teach children the skills they needed, such as learning to sit still. Some parents thought that their children would have been disruptive in a mainstream school with larger class sizes or aggressive with other children. One mother, for example, had changed her mind about sending her child to a mainstream nursery after a teaching assistant asked her what autism was. Another mother was pleased when her son transferred from a mainstream primary school to a special school because he was at the same level as the other children and no longer felt different.
Amanda, a part time yoga instructor, and her husband have two children; Louis aged 5 and Georgia, aged 3. Ethnic background/nationality: White British.
Yes. I will say you have to be. My concern, well me and [name] my husband were a little bit older and we are both quite, I won’t say bolshie. We know what we want and won’t be shall I say hookwinked into something we don’t want. We are quite, we can be quite assertive if we need to be. I have met people through doing Early Bird courses and things, much younger parents who have accepted things, you know, because I think the only problem is sometimes the education I will be careful what I say, they want to steer you towards mainstream, which to be honest for some children it is the best thing but I didn’t feel it was appropriate for my children, either of them really. I don’t think they would have coped very with it.
I don’t mind if they go in later, but you know, I wasn’t happy for them to start in an environment that they would find quite scary. So I think what happened with Louis, Louis was diagnosed as severe and he was put on his statement to go to a severe learning difficulties school and we went to see it, we went to see it and we just felt that there was a lot of children with a lot of physical disabilities. So a lot of the PE was quite limited there were lots of different disabilities, lots of different needs and the school that we visited, [school] where they are now, it is moderate learning difficulties, so it is a little bit more challenging and they have an autistic unit. And I think have something like 80% of the pupils there are autistic so it is much more specialised.
So we had to sort of go to appeal, get the statement changed, but it was no problem. You know. And then with Georgia the school is actually closing and they’re re-digging the special schools in this area. I think may be nationally, I am not sure. And I was told that well there is no point applying for [school] because it is closing and it is actually closing at the end of next year and I said, “Well she should get two years there. That might be enough to start her off and then you know see where we go from there.” But you know we put our case forward and we got, you know, we got what we wanted. So, you know, I have not really sort of locked horns with anybody. I just think you have got to be quite sure of what you want and you need to go and see the schools and you know not just go with what is put on the statement. You need to go and have a look.
You know take your child with you. See if you can see them in that environment. See if they will be – you know your child better than anybody, you know, and you have to just, you know, imagine that they are going to fit in there and they are going to thrive there. And they have. You know we have absolutely made the right choice, you know, I just hope when it closes we get something equally, but you know, I am sure we will. So [laughs].
Some children were in special schools linked to mainstream schools, so that children could move between various sites, which both they and their parents liked. Their children interacted with children in both settings while still having the security and support of the special school. Other children were in specialist autism units attached to mainstream sites and their parents felt this educational setting suited them.
Dot, a former social worker, is now a full time carer and lives with her son aged 15. Ethnic background/nationality: White British.
I am so happy with Joe’s school now. It has been a long fight to get him in the right place. If I could go back slightly and say that his first unit, an Asperger's unit was when he was seven, when he was diagnosed. I was very lucky to get him in. It was because it had just opened. There could only be six children in it. So I was very lucky. I realised … they move here when they are nine. I realised very quickly that they hadn’t built one for middle school. So I had an interview, a review, a statement review and they said, you had better started looking for mainstream for him for when he is nine and this is the local authority and I said “Well he is in here because he can’t cope with mainstream”. And they said “Well there is nowhere else for him to go”. There was one other unit but it was on the south of the county and again there would be children feeding into that from another lower school unit, so there wouldn’t be a place. So I had to go out and try and get the money for the middle school unit, me and the group had to campaign for the money. And as I campaigned for it, I realise there is no upper school either. So we had to campaign for the money for both units at the same time. It took a long time. I refused to let Joe leave that unit until there was another unit to go to.
So him and two other boys who should have moved up when they were nine, couldn’t, there was no where to go. So they had to stay in lower school two more years. So the poor teachers in their unit had to try and learn the syllabus for two years for a middle school to try and help them but they supported me because they realised that he wouldn’t last five minutes in a mainstream.
I went to about three mainstreams. I said to them would you deal with a child who had this, this, this and behaviour? I was coming with this statement for this amount of money and they said, no, no, sorry try another school and I went back and I got the evidence and I said “No school will have him. He can’t move”. And so we stuck with the lower unit and got the money for the middle and upper unit and then we moved when he was 9 and now he is in the upper unit and the teacher in his upper unit is so brilliant. She is so good.
There are six children and there is her, whose specialism is Asperger's and she has got two trained learning supports in Asperger's. So the six children get a lot of support and they go to mainstream and integrate as much as they can. That is the point, that they just don’t stay in this little safe unit, you try and integrate, you try and learn your social skills and you try and do whatever you can so Joe is now at the point where he is more than likely going to be able to take A levels. He has just done mock GCSEs. He has had Bs in them now. When he was first diagnosed one of the things I read was that people with Asperger's have got a higher IQ usually which is true but Joe is by no means a genius. He works hard. He doesn’t like doing home work because home is home. Why would he work at home? School is where he does his work but within that he works hard
Many children were in mainstream schools and parents’ views of these were mixed. Some were pleased that their children were learning from the other children and they felt that teachers expected more from their children. Some schools were flexible and allowed the children time to settle in, for example by allowing them to attend for half days. Many of the children coped well in mainstream primary schools where they had one teacher and did not have to cope with much change during the school day.
Jeanine, a local authority employee, lives with her daughter aged 11 and son aged 8. Ethnic background/nationality: White British.
I want him to go to a mainstream secondary school. He has got to learn how to cope with wider world, the wider world has got to learn how to deal with him and basically I don’t want him to go to special school.
I know special schools do some marvellous work and but I think really given that he is quite capable, he should try and stay in mainstream. Whether that is possible or not at this stage I just do not know. It is the level of concentration, it is the level of focus and his ability to generalise knowledge from one thing to another and he really, really struggles with that and I just don’t know as the work gets harder at school in primary whether he will actually be able to make that transition, particularly when he is so slow at writing and his written is still very unformed. I really, really hope that he does, because I just want him to have an ordinary life and I don’t know whether he will be able to do that or whether the educational system will be able to support him enough to allow him to do it, but I really hope it is possible.
Some of the children found the transition to secondary school very difficult (or parents described their worries about their children’s forthcoming transition). This is discussed further in ‘Difficulties with education’ but concerns were about the size of the secondary school, the difficult environment for the children because of class changes and different teachers and, in some cases, the lack of adjustment made by the school to help the children. As some parents said, inclusion should be about individual needs rather than fitting the children into an existing system.
Some parents sent their children to private schools because of the smaller class size. In some cases this worked well and the children settled down well. Others found that the emphasis on academic achievements and exam results meant that their children were not given the appropriate support and they moved them into state schooling.
A few of the children had experiences of residential specialist schools for children on the spectrum funded by their local authority and these were largely positive. Parents chose residential schools because they felt that this setting best suited their children, particularly managing their challenging behaviour.
Mike, an insurance broker, and his wife have four children aged 28, 27, 18 and 14. Ethnic background/nationality: White British
So we fought and fought for about... Andrew was at home for nearly twelve months but last October Ciaran and I know all the local schools but we were informed about a new one called [school] in [town], which is near [town] and we went up to visit it, and it is an absolutely … it is just designed for severely autistic kids; brand new school with no pupils. And Andrew starting going in October of last year. He now lives fifty two weeks residential up there. He lives in [village] which is three miles away from the school in a large four bedroomed detached house and he has a room and a living room of his own and he is coming on quite well. His behaviour is considerably improved to the extent that he has only had two outbursts since last October, when he used to have them on a daily basis, more than once a day.
A few parents had decided to educate their children at home (see also ‘Therapies’). This was either because they wanted to use a particular therapy, such as Applied Behaviour Analysis (ABA), which involves one to one teaching with volunteer teachers, or because their children were bullied badly at school. One father whose son has hyperlexia and autism removed his son from school because the staff did not understand how to teach him and his health deteriorated.
We have also met some excellent teachers, as well as some who could not cope. One of the best pieces of advice I received early on was to look for schools and teachers that see your child as an interesting challenge and something they really want to try. You may think that you will never find such a school, but they really do exist.
However we’ve always been careful not to expect the school to manage things with our daughters that the girls are not ready to do. There has to be a close connection between what is happening at home and at school. I would never want my child to be put into a situation at school that would cause her to fail. Mainstream teachers can sometimes be very keen to have your child conform to all routines; they need to understand that, for example, being able to sit through 10 minutes of circle time may take many months of approaching that goal through tiny steps.
We had some good experiences with mainstream schools but we quickly realised that our girls were not going to learn from being immersed in normal life. They really do need this intensive one to one teaching as well as some opportunity to be around typically developing children. The school involvement in recent years has been as little as one hour a week in the classroom or library, where my daughters work with their tutor at activities appropriate for their level. For them, it is a big thing to work alongside other children, quietly and without inappropriate behaviour.
I want to emphasize that my daughters are at the most severe end of the autism spectrum. All autistic children are different, and many of those who seem very disabled at two or three will go on to learn language and related skills much more quickly and easily than my daughters have done. But even children who end up being as severely affected as mine can learn, and this learning can continue well into adulthood.
Some children had been excluded from school at the time of the interview, or their parents had removed them from a school they did not think was appropriate and were trying to find a more appropriate setting for them.
Jacqui, a full time carer, lives with her seven children aged between 23 and 10. Ethnic background/nationality: White British.
And in all that time while I was waiting for Luke to grow out of things he was failing at school. You know, the school was failing him actually because he was very quiet and he was in the background and he was only doing his own thing all the time. And he ended up coming out of the education system when he was 13 with no qualifications having been round school after school. And he is brilliant. You know, I mean, he is extremely talented in all sorts of ways, but the education system as it was and maybe even as it is doesn’t cater for people like Luke unless there is somebody to speak up for them because they won’t speak up for themselves and Joe on the other hand does speak up for himself, rather too loudly a lot of the time [laughs] and consequently he is excluded regularly and he gets into trouble. He is doing OK at the moment, but it is certainly a hard slog to keep him at school because he tells people if he thinks they smell or if he thinks they are wrong or if they are being unfair and really that is a better way then keeping it all to yourself and destroying yourself which is what Luke did. But really I suppose that is why Luke also talks, and talks to people and has written his book, because he had a tough time and still does. You know he is 19 in August and he is still at home, not knowing what to do.
Age at interview:
Katrina, a full time carer, and her partner have a daughter aged 11 and son aged 8. Ethnic background/nationality: White British.
Callum was getting more frequently upset during class in the day, so again he is needing attention, extra attention then. So it sort of became undeniable that the school was struggling to meet his needs. Callum wasn’t able to access the curriculum fully because half the time he was crying, half the time he wasn’t going in at all. He was physically sick at school because he was so anxious and it just became, a ridiculous situation, so the school did start putting in reports to the LEA explaining the difficulties and I can’t remember now how long the whole process took, probably, well it was two years, but we eventually did get a statement and initially it said he could have support in the classroom but I think everybody agreed that the situation had gone so far we would never get him back to that school. And it is a very busy school, it is a big heavily subscribed school.
So he did actually end up going to this autism provision after a period out of school completely so again it was hard for him going into the provision. And he had to go in with support as well as the teachers. He went in with his respite worker but he made the transition and obviously a provision is only five other children in one classroom, but he still needed like the one to one and as I say he only managed an hour a day and that was still a struggle to get him there, because he has been so traumatised by the whole mainstream school experience.
Age at interview:
Karen, a full time carer, lives with her two daughters aged 14 and 12. Ethnic background/nationality: White British
They also looked into the subject of transport and taxi to and from school which meant that Nicole would be attending school full time whereas she had only been attending school for 20 hours a week. She would then be going up to, I am not quite sure how many hours a week the full time table is, 30 I think, so it was a big jump. And no transition work was done, you know, Nicole didn’t, the school hadn’t sorted out the timetable so we couldn’t talk about who was going to be teaching Nicole in September. We couldn’t talk about which classrooms she would be going to.
And a teaching assistant was employed in the June she came in for a week to meet Nicole and just familiarise herself with the school and it became very apparent very quickly from when I first met her that it wasn’t going to work. She was an older lady who had worked with a severely autistic child and before she even met Nicole I said to her Nicole is a 13 year old girl who has Asperger's syndrome, who is very intelligent and hates being patronized and Nicole was brought out to meet the lady and she went, “Hello Nicole, how are you are?” And Nicole looked at her and I just knew that it wasn’t going to work.
And that week she spent in school was a nightmare because Nicole made it very clear that she wasn’t going to work with this lady and there was all sorts of problems. So it was decided there was another child starting the school in September that was coming with a statement and somebody had been put in post to work with him and it was decided to swap the two staff around. Unfortunately this lady had no experience of autism, no training, no understanding of autism at all. She was just, you know, a mum of somebody at the school. And when Nicole went back to school in September this lady started at the same time so she had you know no knowledge of the school.
We had only received Nicole’s timetable the day before Nicole went back to school so we had no chance to do any work with Nicole on the transition and it all went horribly wrong within the first week. The school had had a new headteacher as well so there was you know a change of management structure and a change of attitudes. The headmaster decided to impose his will fairly quickly onto the school by what word am I looking for, clamping down on the uniform so it was you know top buttons done up, ties done up tight, shirts tucked in. And Nicole’s sensory issues, when Nicole is stressed her sensory issues are actually worse so her hearing is more sensitive, her sense of smell is more sensitive and her skin is more sensitive. So having all the shirt material tucked in around into her skirt, bunched up around her stomach, a tie and a shirt done up tight around her neck, just increased her stress and her anxiety.
And there was just from day one in the September there was just reports coming home, phone calls, Nicole was very stressed, you know, arguments, arguments with teachers, arguments with teaching assistants. You know I was ringing the school, and saying what is happening, you know, Nicole is very stressed and it is not working. The new teaching assistant walked out of the school because she couldn’t cope with Nicole’s behaviour and the school persuaded her to come back and stay on as long as she didn’t have to work with Nicole. And by the end of the third week, Nicole had had a two day formal exclusion for swearing at a teacher who was trying to force her to do her top button and her tie up.
I argued against formal exclusion. I asked for it to be remove
As many people we interviewed told us, the autism spectrum includes a range of different abilities and the range of different types of schooling reflects this. There was little support or advice to help parents choose the most appropriate school for their children and, in some cases, parents had to move their children from school to school or remove them from the education system altogether. Other aspects of education are discussed further in ‘Difficulties with educationand ‘Further education’.