Problems with school

In these case studies the parents are sharing education because they perceive that

the school is not able to fully meet their child's needs. Central to this is their perception

of a lack of understanding of autism in schools, and of a failure of the school to

understand the needs of their child specifically.

TE is the most positive about the school that shared her child's education, but she

explains that it 'was a school that was quite alternative, for children with learning

alternative after the mainstream state school experience 'did not go well.' At the

mainstream school Elliot had been a 'miserable, distressed little boy', and the small

alternative school enabled them to move to a ‘very supportive' shared education:

They would let me know what they were doing and any issues with things he had struggled with so I could pick up on things if I wanted to ... This school being very small and specialist was ... working in quite a child centred way.

CY expresses frustration that Coby does not meet the perceived profile of an

autistic child as understood by the school. '[With Coby] there weren't the typical signs

that the school were used to.' She believes that some of the strategies that the school

has used in the past have been damaging. 'We had a couple of occasions where they

physically brought him in. I think that was a turning point where a lot of trust was lost.'

CY has found it difficult to get her suggestions as to what will help Coby heard at

school. 'I ... sort of suggested [a break], but the teacher [said], “Oh no ... If he has five

minutes they'll all want five minutes. It'll be anarchy.”' She is conscious that the school

is not particularly positive about shared education and is worried that if she asks for any

further flexibility, she risks the school withdrawing the provision of shared education:

I wouldn't dare ask ... I think I've pushed them as far as they will go on this … [Shared education] was all so new to them. It took a lot of coaxing ... They tried to make it just a short-term thing. I had to really argue it, and they were saying maybe just one afternoon. So, a full day is just about the most I could get out of them.

GE feels the school does not have the experience to understand Adpar. 'They’ve

dealt with children with ADHD but I don’t think they’ve dealt with children that have

got ... ASD and ADHD and possible PDA.' She feels that the school is struggling to

Adpar doesn't go into a class; he’s in a room on his own with just him and his 1:1 … I don’t think he learns an awful lot while he’s there. He doesn’t do any actual structured work as such.

GE feels also that the school is too quick to call on her, and finds the short

length of time that the school will allow Adpar to attend demanding on her:

[Adpar attends for] an hour and a half at school … I’m pretty much there most of the time with him … We have this what we call ‘sofa time’ where, instead of staying outside in the playground with the rest of the children, we go straight in ... until the bell goes and then we move round. And then I’m there with him for a few minutes, then I come home and ... by the time I’ve walked home and had a cup of tea, it’s time to go and pick him back up again.

DN feels that the school is not alert to the stress that Ben is under as he doesn't

manifest his stress in challenging behaviour. '[He's] seen as ... not having a problem and

what isn’t seen is how much that behaviour takes out of the energy [he has] in a day.'

She is frustrated that the provision they offer is often itself inflexible:

[In] Year Five …. they threw like nine different TAs at him … he doesn't have facial recognition … so he's always surrounded by … strangers … We asked them and said, “He needs either one TA or maybe two if there's no other way around it”, but then it's like, “No, we don't work like that.”

She feels 'reasonable adjustment' for children with autism is often token and

inadequate, as in the example of the transition that was arranged for Ben between

primary and secondary school:

Ben went three days to this school but, normally, they only go one day and that’s then a 'big transition' … I said, “Well, he needs to be there for six months only half a day and then maybe he’d be alright.”

She is aware that there is a continuing pressure for Ben to attend more hours

because 'attendance is [seen as] more important than personal well-being and

development, especially when it comes to sensory and mental health issues.' She feels

that this pressure is counter-productive:

The constant push for our son to be in school more than he's happy with is making him anxious and he does a lot worse because of it. It actually has the opposite effect, with him not wanting to learn or do well because doing well results in the punishment of having to go to school.

SS is aware that the school that Edward attended initially was 'not equipped, or

not skilled, to deliver … [as] at the end of the day it was a mainstream setting [and] they

weren't specialists.' She was also concerned that the curriculum was not sufficiently

flexible to meet his needs:

[Edward] needs to tolerate having his hair brushed, teeth brushed, having his feet measured; these things cannot be taught in a mainstream school. But just

because a child needs to be taught that it shouldn't rob them of the opportunity for a mainstream experience.

The inability of their local community school to meet Edward's needs became

more obvious as time went on. 'As [Edward] became older and the gap became larger,

the lack of understanding of the teaching staff became more and more evident.'

However, even when Edward moved to a special school it was not autism-specific and

SS found 'there just aren't the resources in school to do 1:1 teaching.' She decided that

in order for Edward to receive the input that she believes he needs, she would share in

his education and provide it herself. She requested for a 1:1 support assistant with

continue to provide support during Edward's at-home time, thereby providing

consistency across environments.

CY, DN and GE all express concern that mainstream schools lack the

specialisation to meet the needs of children with autism, but that special schools lack the

provision to meet the needs of children who are academically able. DN indicates

concern that mainstream schools 'don't get how a kid that is, purely in learning, so

advanced as Ben has so many problems.' She knows that Ben's uneven profile causes

difficulties in a mainstream setting. 'Last year, his knowledge was that of a seventeen-

year-old … but … his … “How I am in the world” … is like a seven-year-old.' She

feels that his at home-education will better allow him to reach his potential:

We're looking now for advanced algebra and the beginning of quantum physics … he's just built his own computer … and he's doing Cyber Security [with the] Open University. That is a structure that really works for him because it’s just so clear and he sees where he is and what he still has to do.

GE, too, is aware of Adpar's intelligence and that this is not being nurtured at

school. 'When he was two, he got up one morning and logged onto the computer and

sent his uncle in Newcastle an email, you know?' She feels that society does not

understand that Adpar can have such specific challenges and yet be intelligent. 'I think

the problem is ... a lot of people believe that, if you’re special needs, you’re ... slow ...

and where that’s not the case ... they can’t put him in a box.' CY comments that sharing

education allows Coby to avoid having to go to a 'different, more specialised school that

may not allow him to reach his full academic potential.'

The children are quick to express that their learning needs are met more fully at

more than I did in school' explaining that this was because 'it is more relaxed.' Coby

says that during at-home time, 'I find it much easier to understand things', adding that

LL, his tutor, 'is good at making learning fun.' When asked for specifics he describes:

'We do this thing called sweetie maths and if I do it I get to eat one of the sweeties. We

use sweets to count. I like sweets.'