A-Z

Parents of children on the Autism Spectrum

Difficulties in education; getting a statement or Education, Health and Care (EHC) plan

Concern about their children’s education was a major theme in the interviews with parents. They worried about the lack of awareness of the autism spectrum in schools, the complexity of the assessment process, the lack of appropriate support for children at lunchtime and breaks, bullying and how their child/ren would cope at school.

 

Rosie describes how Sam could not understand the concept of sitting down and learning.

Rosie describes how Sam could not understand the concept of sitting down and learning.

Age at interview: 53
Sex: Female
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 So then he started school and there was a huge battle to get him statemented. They wouldn’t have him statemented before he started school. So he started school and it as very difficult for Sam. He lacked concentration. He couldn’t understand the regimentation of sitting down and learning and he used to eat everything – books, his school uniform, he would wear a uniform to school and come home and all the buttons would be gone in a day where he had eaten then. And of course the teacher used to get upset about it and he has – at school he like to hold people and touch people quite a lot and of course he couldn’t do that and he used to upset the other children and then everyone got upset with him. It was quite difficult.
 
And they said that they couldn’t statement him, but in the end he was statemented and he got 20 hours, that is full time. So they had a one to one person in and she was really nice but after about a year Sam was quite rebellious and he didn’t like it because he didn’t like being different from the other children. He wanted to be the same. And he was quite nasty to her. Not in a physical way. Sam is never violent, he is very passive, but by he wouldn’t do things at school. So they had to rethink about that. So in the end they decided to teach him in a little group and for each lesson have a different helper in and that worked much better until he reached about eight and then there was beginning to get a gap between and all the other things and Sam noticed it more and other children and it wasn’t very nice for Sam, so – and they didn’t know if he could stay at the school so in the end we put him in a private school.

Getting a statement or Education, Health and Care (EHC) plans

Most children's needs can be met by their school, sometimes with the help of outside specialists; with delegated or devolved funding the school can support children through school-based help called ‘SEN support’ (School Action' or 'School Action Plus were replaced by SEN support in September 2014 for more details see GOV.UK website.

Statements of special educational needs or ‘ statements’ and Learning Difficulty Assessments (LDA) are being replaced with a single Education, Health and Care (EHC) plan for children and young people with complex needs. The reforms, introduced through the Children and Families Act, came into force on 1 September 2014. So now when a child needs additional support, the local authority (LA) and the health service must jointly make a statutory assessment of his/her needs.

If the local authority then decides the child needs special help, as the special educational needs of the child cannot be reasonably provided for with resources normally available to mainstream early years, schools and post-16 provisions, a EHC plan is produced describing all the child's needs and all the specialist help; the local authority has a legal duty to meet those needs just as it was with statements but this protection is extended from age 16 to age 25 for those in education or training.

Councils must be able to offer a co-ordinated education health and care plan assessment and issue an EHC plan within 20 weeks where one is needed. Those with an EHC plan also have the legal right to ask for a personal budget, which they will agree with their council (Department for Education September 2014).

As part of these reforms local authorities must publish a 'Local Offer' outlining the support they and other local authorities nearby will normally provide for children with Special Educational Needs - SEN.

Families will also be able to access new Independent Supporters to help with EHC needs assessments, and there will be a gradual transfer from statements to EHC plans by the end of April 2018.

For more information, go to National Autistic Society or telephone the NAS Education Rights Service on 0808 800 4102.

All the parents we spoke to were interviewed before these new arrangements were put in place so refer to the process of assessment as ‘Statements’ but many of their experiences are still relevant under the new system.

Most parents we interviewed talked about the importance of getting an assessment (statement) for their children. Without an assessment/plan specifying the hours and type of support to be provided, it is very difficult to get the appropriate support and children can struggle in the school system.

 

Tracy explains the statementing process.

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Tracy explains the statementing process.

Age at interview: 40
Sex: Female
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Statement process is for schools and the local authority that govern the schools to decide what the individual child may need and it is a rigorous process of assessments and doctors and specialists and professionals and it can go on and on and on for years. And I do believe, because again in Nicola’s case it was 15, 16 years ago and I do believe now, I don’t want to scare anybody, that that process has been condensed and it is a lot simpler and a lot…. It still takes time, but it is not as time consuming and they do get the help quicker because they have got a better process of doing it. And basically all the independent agencies that you might have, like a speech therapist, and a behavioural specialist and like in Nicola’s case a  doctor and they all do their own individual assessments and then through the local authority it is all pulled together and then they decide, they make one big report and they decide what the help they think that the individual child would need and the provision that they can provide and also the statement gives them the authority to either obtain the money and spend the money. Without a statement the child cannot bring the money into the local authority. I think that is a way of explaining it.
 

Carolann thinks parents should “push hard for a statement.. it will have an enormous influence on...

Carolann thinks parents should “push hard for a statement.. it will have an enormous influence on...

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But that was me pulling strings, the school certainly weren’t prepared and when I asked the school for a statement, I didn’t know what a statement was in those days, I mean I was so naïve. Had I known then what I know now, I would have pushed for it but I didn’t. Her statement would, had she had it, we only had about three months to run, before she actually technically left her secondary school and they persuaded me, went to tribunal and the tribunal said, “No she doesn’t need a statement.” I even got [doctor] from the [hospital] to come down to the tribunal. Even then they refused to give it to her. As I said, if I had known I would have pushed, even if it only lasted one day I would have pushed. But I didn’t know. So they persuaded me that it wasn’t worth it, blah, blah, blah. So we let it go. I know now that had she had that statement, it would have helped her in college. It would have helped her basically for the rest of her life, although technically the services supported, within the statement, finished at age 16. The implication of the fact that she had a statement would be with her for the rest of her life. So anybody out there if you are told by a school not to go for a statement, go for it, push hard, and get it, even if it only lasts for 24 hours, it will have an enormous influence on the rest of your child’s life.

While not all the children needed to be statemented, the parents of those that did described a range of experiences. Some schools were less supportive than others. For example, one boy’s school wanted him to go on School Action Plus (now SEN support) but his mother was determined for him to be statemented; “There was a bit of flustering and then they said they would support me”. Parents felt that the sooner the child was statemented, the better and a few parents were delighted that their children were statemented during pre-school - though even a straightforward process of statementing was still described as worrying and stressful.

 

Nick and Vikki surprised their son's junior school by putting in a parental request for a statement.

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Nick and Vikki surprised their son's junior school by putting in a parental request for a statement.

Age at interview: 40
Sex: Male
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Vikki' So we basically went for a statement of special educational needs for him. The school were quite shocked when we did that. They said well we would have done it in two years time anyway but the first comment we had from the new school when we went to talk to them and had these provisions it is so nice that this has happened earlier. Normally we get them after five years at juniors when it is too late. Or it is very, very difficult to help them whereas we have Peter from the beginning of juniors so we have a lot more time. And I think in the two terms he has made more progress in the two terms in this new school than he has in the proceeding two years in the last school.
 
But it wasn’t through lack of effort. I think his teacher tried but she just didn’t know how to connect whereas he has a lot more dedicated one to one support in the new school. In the old school they had to have support in the classroom for other reasons, for other pupils and I think he was sort of included in that group. So now things are specifically set up to help him his reading is almost up to age appropriate and he can read reasonably fluently now. His maths is still in the dark ages, but… the strange thing is the big changes to new schools just haven’t fazed him and he has flourished in the new school. So ….
 
Was it a straightforward process to get the statement?
 
Vikki' Well we put in a parental request not despite the school but just because we were concerned because he had had his key stage one SATS and we weren’t told about the levels that he was going to get and they all came out far lower that we would have thought. And we said hold on a minute, but they didn’t seem unduly concerned about this and coming from my professional background I thought well I would be a hypocrite if I didn’t pursue this.
 
So we filled out all the forms and I think the forms themselves try to put people off because of the length you know, everything they ask you and the detail you have got to provide. So we filled up the forms which then made the school sit up because they then had to provide their contribution. The meetings we had with the school we always had to defend our position as parents, but saying we want the best for our child. It is nothing against you as an establishment but we are concerned about the progress that our child is making.
 
The EP then had to come in and I think had to come in and I think her comment would live me. She turned around and said, “Oh well I don’t think you have got much chance of this because I normally work with the child before they get a statement and I have never seen him before.” So that really filled us with very positive attitude and you know she tested him, and submitted her piece of evidence and I think again that went through and the statementing process itself went through extremely quickly and it was again, we put the statement through and asked for it in July and it came through in December with the actually named school that they wished him to attend as well.
Nick' So somebody up there is smiling on us. I don’t know who it is. It is somebody senior somewhere in [town].
Vikki' But as I said it is something I think as parents don’t realise that they have got the capacity to ask for statements, even if the school have said there is not a hope in hell of you getting one. But it would appear as far as we are concerned that if the power of the parents was greater and got the statement in place then perhaps the power of the school.

Some parents had ‘fought’ or ‘battled’ to get their children statemented, and a few parents were still waiting to hear from their local authority. As one mother said; “If they had looked at him properly he could have had a statement going into school but because they did not do that, he is now in school trying to get a statement while he is in school and that makes me so cross that pre-schools don’t recognise it.” Another parent described the process as a “minefield”.

 

Bobbi describes the statementing process as ‘mind boggling’ but felt well supported by...

Bobbi describes the statementing process as ‘mind boggling’ but felt well supported by...

Age at interview: 38
Sex: Female
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Mind boggling. I mean because I am American anyway. And then David said to me, it doesn’t matter, he said he never was in the process of it. He looked at it and was ohhhh. And it was, it was scary. But you know I felt that it wasn’t too scary that I didn’t think I could handle it, we could handle it, or that we needed somebody to guide us through it. You know, when they asked us for our evidence that part where they say parental evidence, I think I gave them fifteen pages of typed, you know, I mean we were so on top of it by that point that even though it is difficult, even though it was slightly confusing in some places because at first I wasn’t sure whether or not they had the ability to pull him from the school. And that was something that I was really concerned about, because it really was important that he stayed at the school he was in. And I didn’t want them to say, well no, we judge that he is not going to get the support, he needs to go here. And when that didn’t happen it was much easier.

 
We are coming up for a review and again I am like ee hee hee. But the people involved because they are, because we have been involved with them more than once you know the SENCO with the school, and the educational psychologist, has always been available through the school. And whenever they have come in and they see me they make a point to say hello me. And because they were so contactable I guess and the doctors and stuff that are involved, they have always been very supportive. I guess they have made it easier, you know, all along, and I guess that it takes out some of the worry about the process, because you do feel like you are bogged down by paper work a bit, you know, and by procedures slightly. And at first we only got fifteen hours and we fought five more, and five more and we gave no evidence and because that went through so easily – they didn’t fight us I guess is the point I am trying to make which gave me more encouragement and I feel more empowered to deal with now this one, because we are going to ask for another five more hours.
 
Without a doubt, without a doubt because we really, really do think that he could progress so much further and really reach, because he is not reaching his total potential just yet. That five more hours we really do think is going to make a difference. A bit more and I would be hey… but you know you take what you can get.   
 

Katrina describes the statementing process as a battle which you live with, day after day.

Katrina describes the statementing process as a battle which you live with, day after day.

Age at interview: 35
Sex: Female
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So your next thing was to get a statement?
 
Yes which isn’t as easy as it sounds [laughs]. You know getting a statement is a whole other battle, the same as getting a diagnosis. You are constantly pushing forward and asking to be assessed, asking to be seen, what do they think? And everybody else seems so laid back but you are living with it, day after day. They just see you once a month, you know, you do feel you are just a file on their desk. But with the statement, it is a very formal procedure you have to go through, and so you fill out the paperwork and you send it off and initially I just assumed that he would get one. I didn’t realise that people were turned down all the time and you know you have to really, really, really, really be struggling before they will even consider assessing you and unfortunately the school… I don’t know if I am being unfair if I say they weren’t terribly cooperative, but they just gave the line that he appeared to be coping which as far as the LEA is concerned means “well he doesn’t need a statement then”.
 
So we kind of like left it another six months as you have to and went through the procedure again and of course in that six months it was getting harder to get Callum to school and the signs were much more obvious and the teachers did have to admit they were struggling because just the procedure of getting him into class at 9 o’clock in the morning was difficult because he was so upset. He had to be pulled away from me. He was in tears. We had to go in early so it didn’t upset the other children because it was starting to upset the children in his class and that needed an extra teacher. So it was requiring more hours of their time.

Once the parents had got the statement, some of them still had battles with the school to make the school provide the hours of support that the statement recommended. They had to monitor closely the support that their children actually got and make sure it was the amount specified on the statement. Other parents had appealed to SEND Tribunal (Special Educational Needs Independent Tribunal) to have the statement altered to increase the provision of support. (The SEND Tribunal is an independent tribunal which hears and decides parents’ appeals against decisions of local education authorities about children’s special educational needs).

For more information see Department for Education ‘How to appeal against a SEN decision' a guide for parents’.
 

Paula took the school to tribunal when her son did not get the support he was entitled to as he...

Paula took the school to tribunal when her son did not get the support he was entitled to as he...

Age at interview: 40
Sex: Female
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And then all of a sudden three months later the head teacher phoned me up to exclude Alex and it turned out that this was in the October and all of Alex’s support that he received at school action plus which is supposed to be five hours a week (and the ten hours extra help*), but he wasn’t even getting that. The specialist teacher team had said that Alex needed help moving around the corridors. If you think you have got 1300 children in a school that was built 50 years ago, in corridors that are too small, and he has a real hypersensitivity to sound so every time the bells were going it was irritating him. And the other boys in the class were kicking him, tripping him up, Alex had a bag. He has a laptop, he has all, you know, PE kit. So he turned round and bashed one of them and so he was excluded for that. But my question was, “Well where is his LSA where is his support that you say that he doesn’t need, but it is in this report from you know, the LEA says, he needs help in the corridors.” “Oh we have taken his support away. It has gone to the year sevens.” And I said, “No, no, no, that is Alex’s support.” (Again the headteacher was a relic from Thatcher’s Britain; very autonomous and Dickensian.*)
 
Anyway I had had enough by then. I contacted the Children’s Legal Centre is [town] and a very good solicitor there took the case on and we took the school to the SENDIST Tribunal for disability discrimination and a finding was recorded against the school.

In addition, some parents talked about “the constant fear” that hours of support were going to be taken away or that budget cuts would affect their children.

 

Jeanine describes how support should be provided to enable her son to be able to contribute to...

Jeanine describes how support should be provided to enable her son to be able to contribute to...

Age at interview: 46
Sex: Female
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Well I have got a statement review next week and obviously I am not looking forward to that. There is, you constantly fear, that hours are going to be taken away or services are going to be taken away, or there will be some budget cuts that will come in and affect you. It shouldn’t be like that. It should be about helping Robert now in order that he can contribute to society later, so that he can get a job, he can work, he can live an independent life which is what I want for him. All I want for him is what any other child can have and what his sister can have. I just want him to have the same normal ordinary things, an ordinary life, that other children can have.
 
He just needs a bit of extra help, particularly now in order that he can access that. That is all I want for him. I don’t think I am asking for too much and I just want the services and bureaucracy to help me to get that for him. And it is not easy. It is a struggle, it is a fight. But there needs to be more awareness of the issues, there needs to be more understanding and a greater commitment to person centred planning.
 
And using that, not just in terms of the sort of older children, but use that with younger children and try and get the different authorities. We have local strategic partnerships we have all the mechanisms in place pool budgets, commissioning, we should be able to do it but it just isn’t happening on the ground. And it should be happening and it isn’t. I find it, really, really difficult that policy decisions are being taken nationally and locally which are not moving on inclusive education, they are not moving on pool budgets and they are not moving on what is best for children and it is going to take a long, long time. Maybe it’s a generation but I don’t want this generation of children to miss out.

Relevance of the Curriculum
Several parents discussed how inflexible the national curriculum was; their children struggled because though they were very good in a few areas, they found many of the compulsory subjects too difficult to manage.
The government had stated that the new EHC plans must  now be person-centred, focusing on the needs and aspirations of the child.

 

Jacqui thinks that the emphasis in mainstream education is wrong for many children with autism...

Jacqui thinks that the emphasis in mainstream education is wrong for many children with autism...

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And I think a lot of the time the education system puts, not always their own fault, puts so much sway on maths and reading and writing and all that stuff and that is all because of government initiatives and performance indicators and everything that they all have to do the numeracy hour and the literacy hour and get the kids to do these things that there is not so much focus on the social skills and all of the aspects of self help that people actually need to learn because a lot of the time most of the learning that goes on at school is in the playground. And of course if they sit under a bench or hide away in the toilet, or go in the library, they don’t get any of those kind of things and a lot of the time they don’t give people cover in the playground because it is always somebody sat next to them in class and then it is throw them out into the yard and get bullied or do the bullying or whatever it is and back into class again, whereas in reality you could teach structure and he means that and she is doing that within the frames of social environment so … and that was never given to Luke, because Luke has always been so brilliant in a lot of ways, Luke’s never been seen in need of any particular help more than an odd bit of social skills stuff. And so that is how he came out.
 
Joe’ struggled through school I have to say. We have been through about three and he is now in a mainstream secondary school with a SERF unit attached to it, Special Educational Resource Facility. And I mean we have our moments. Not to say that they understand him fully and it is perfect. They don’t and it isn’t and I go in an awful lot and have an awful lot of talks with him and an awful lot of things go on but in reality Joe is an extremely difficult child. I wouldn’t like to teach him. I wouldn’t like to teach him on my own never mind in a class with another 30 odd. So even though he has got a support worker, it is constantly saying, stop talking and keep still. Are you listening? And as well as teaching him all the stuff that a kid with Asperger's needs which is all the social stuff and a lot of the time because ADHD accompanies, autistic spectrum thing, Asperger's or autism, people in the education system or in the medical profession only see the ADHD and they see this great big buzz of activity and don’t realise that underneath it is still the same confusion as someone that is sitting in a corner with their face to the wall.
 
And all he does is throw himself in as the class clown and make a great big noise and a great big mess and get himself kicked out of virtually every class. Whereas it is because he doesn’t understand the language and because people use idioms and metaphors and they don’t speak clearly enough and because he has got such extreme sensory problems Joe really has such acute hearing and smell and vision and visual distortions and perceptual problems that that really rules his life, but people usually only see his ADHD stuff because he is just this big dangly 14 year old with a dummy in his mouth most of the time [laughs].
 

Liz thinks that the education system is too inflexible for children on the spectrum.

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Liz thinks that the education system is too inflexible for children on the spectrum.

Age at interview: 45
Sex: Female
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And a lot of these children are very bright, in different areas, in you know, they might not be able to cope with twelve different subjects but they might be extremely good at three or four.
 
So again we have inflexibility on the education system. And that is why you need to have the diagnosis, you need to have the support, so that these children are able to then carry it with them and be more selective in the areas that they are very good at, you know. They have a lot of things going bad for them, let’s concentrate on the things that are really good. You know does he have to do physics when he probably doesn’t want to do physics but he loves maths. So you know let’s concentrate on the points that are good and then their self esteem really you know, gets good. He is good at maths, he is good at computers, he is good at trampoline. Those are the things that I am really pushing forward because that is the only time of day he gets, you know good things come out of it. And you know he could then integrate in a group, you know in trampoline he is doing it as a group, not as an individual, so again he is learning the social skills within the group. He has to look out for others when they are on the trampoline and he gets points if he is actually doing that. So he is kind of getting there, but in another subtle sort of way, rather than a social communication skills class sitting down in a room.
 

Daniel thinks the education system simply lower the age level when teaching children with autism.

Daniel thinks the education system simply lower the age level when teaching children with autism.

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In fact that is one of the great complaints I have about the way autism is dealt with and any mental condition like that, it must be the only kind of condition where the cure is national curriculum. The intended cure is the national curriculum. There is no treatment. There is nothing any one does. There is no. Sorry I will rephrase that. There is something that can be done. There is lots that can be done but there is nothing that the state is prepared to do, other than administer the national curricular. They simply lower the age. There is nothing else they do. If you are ten years old and you are autistic. Well we will teach you the national curriculum but we will treat you like a 3 year old. And they do the little tick boxes. Done French, yes. Done English, yes. Done history, yes. Done anything for the child. No. But that isn’t in the tick box, so it doesn’t matter and it is completely, it is completely ridiculous. A total waste of time, money, and everything and it is nothing to do with money. It is to do with caring about the children.
 
You need a certain amount of money to run a school I suppose but people with autism need, they need training, therapy, help in understanding their condition, strategies for coping. When they go to school I don’t think they even tell the children they’ve got a condition. They don’t say, “Look you have got autism. This is what it means. This is what we need to do.” They don’t even tell them that. They just say, “You have got to colour that in.” And if your disability gives you a spatial awareness problem that means you can’t colour things in, then, “Oh he is refusing to colour it in. Right I will pin him to the floor. We have got a refuser.” That is the way they deal with. But they don’t say to the child. “You have got autism. Part of your particular form of autism is a spatial awareness problem. Let’s see if we can do some special training to help develop this.” They don’t do that. It is just treat them like normal child though at lower level. And if they can’t do it you punish them. That is not the way it should be.

Parents whose children were in special schools emphasised the relevance of the targets set for their children, such as learning to sit still for short periods of time.

 

Tony and Alison discuss how teaching Nathan geography or French is no use to him but learning to...

Tony and Alison discuss how teaching Nathan geography or French is no use to him but learning to...

Age at interview: 36
Sex: Male
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Tony' I think the thing with him going to the special school as well because they don’t just teach ….
 
Alison' Education wise.
 
Tony' … bang in geography and French which would be no use to Nathan because he wouldn’t understand it anyway. That should teach him how to work his change out and what bus to get on if he wants to go to [town].
 
Alison' Yes. They teach him social skills which with the social skill… I mean there is only so much we can do. Or that we think we can do. You know we are not teachers and you know we do what we can.
 
Tony' He doesn’t listen to us, we are his parents and he doesn’t listen to us anyway. But if it is his teacher that is telling him, he will listen to it.
 
Alison' He will listen to it and take it in, yes. But they teach him the social skills. They take them out and they play golf with them and they teach them how to be around other people you know and remember their manners and be nice to people and … just how to basically go out in the world and live. You know, and survive which is what he needs.
 
Tony' Yes. It is a very practical school as well. They teaching them things like bricklaying and plastering and they have got a couple of poly tunnels and that sort of thing so they do a lot of vocational activities, but no I think the positives are that I think he certainly pulls us together as a family unit.

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Last reviewed July 2017.
Last updated
January 2015.

 

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