The negative impact of poor communication in the system

This subtheme describes how poor communication throughout the system negatively impacts on the provision of good post-diagnostic support for children with autism. Poor communication appears to be rife in the system, between parents and schools, between parents and other services, between services, and between schools and other services. This poor communication leads to poorer relationships, which further prevents the system from meeting the needs of children on the autism spectrum.

Many parents discussed their experiences of poor communication from schools and how confusing this can be for parents:

Parent3: [the report] was really conflicting to what the school were telling me and then what independent and I don’t think they realised that the reports would be sent to me. So, I don’t think they realised was I’m like ah! You’re telling she’s doing wonderfully but the reports are telling me you know she’s not reaching targets, so what is happening here?

Other parents found it very difficult to communicate with schools when they wanted to, and the school left them feeling invisible:

Parent8: So can you do something about it? She said, no, you have to follow up with the school. It means I am again left to do everything myself with the people who are not listening to the parents. They see parents as invisible people. We don't exist. No matter how many emails I said, no matter how many calls I do, I'm invisible.

Some parents identified that the poor communication between parents and schools often leads to breakdowns, which need to be avoided in order to best support the child:

Parent1: you kind of don't want to always become this big bad person that comes into school going 'well you haven’t done this you haven’t done that', it’s trying to find a way of communicating better with the schools really, without you know, I think a lot of communication breaks down.

From the other perspective, school staff also discussed their experiences of poor communication from parents, and the impacts this can have on relationships:

Teacher3: I’m feeling undermined and let down to be honest. I’m going through a situation at the moment and I am reflecting back to SENCO but there’s a lot of lying at the moment going on with the meetings that are happening, what’s being said will happen, and not getting back to us to actually implement them… and then we’re made to feel like crap because it’s oh why haven’t you done it, ooh so hang on a minute you didn’t come back to us and say you promised this person this this and this so it hasn’t happened. So I think sometimes it is let down in communication… they need time to talk to other people for it to then get back to us to make it work, it can’t just happen overnight and those parents want it there and then and they make it difficult for us.

Some parents also talked about their experiences of poor communication between services who are meant to work together:

Parent7: They do seem to not be talking to each other, I must admit, given that they are supposed to work together in partnership.

Interviewer: Who's not talking to each other?

Parent7: Social services and CAMHS… It’s really weird, even though they’re working in partnership was not there, even in the same building, they were not accessible to each other… Why are you not talking to each other?

This lack of communication was also recognised by those within the system. School staff frequently talked about their experiences of poor communication from other services:

SENCO4: And all the issues as well, I had a lot of difficulty with the medical side of issues relating to children with autism, toileting....and just the medical profession. Not really being very open or honest or sharing information with us and really having to kind of dig down and try and find out what’s happening and who’s supporting and er cos all those things matter and it seems so far removed from education

sometimes.

Some school staff discussed how poor communication from other services can impact on relationships, setting up a feeling of ‘you versus them’:

SENCO2: when we have a pupil that’s been diagnosed we will receive the report and there’s a feedback meeting from the social communication team. These can be quite, they can be quite hit and miss. Sometimes really really helpful, really informative. Sometimes it’s like it comes across like as slightly patronising in the way that they’re like you know these are some of the difficulties they have and you’re like yes I know I’ve been supporting this child for three years… it’s almost like you versus them slightly and that you know they’ve sort of got a snapshot of this child but you’ve known this child for three years and you’ve done a lot of the recommendations.

Many teachers and teaching assistants spoke about the role of the SENCO and how poor communication sometimes hindered their ability to provide support, with this being influenced by the style of the SENCO:

Teacher1: My last SENCO she was very, very just didn’t really listen, was kind of always busy doing something, didn’t really talk to the children so just different. I think it’s the person really. If they care a lot they’re gonna put the effort in.

The internal dynamics within the system could thus be a hindrance. Indeed, another way in which poor internal communication affects the system’s ability to provide adequate post- diagnostic support is school staff feeling distant or cut-off from understanding other parts of the system, making them unable to think more strategically. For example, both teachers and SENCOs spoke about not understanding the financial situation of their school when it came to budgets:

Teacher1: Even the funding I have no idea how that works, personally I have no idea. Teacher3: No. No we don’t know how the funding’s broken down.

Teacher1: Who gives us the funding? I don’t know.

SENCO4: so I may well be up there with you know a deputy and a head and we fill out one big... I have not got a clue what money or what budget is going on. It’s all as far as I’m concerned completely fictional, means absolutely nothing.