Clinical implications and recommendations

There were a number of clinical implications and recommendations which emerged from the results of this project. These are presented using Bronfenbrenner’s ecological systems model to structure the recommendations. Whilst this shows that there are changes to be made at all levels in the system, it also highlights how interconnected the layers are, in that changes at any one level would generally necessitate changes throughout the system.

Microsystem

One finding which emerged from the project was that TAs are often supporting pupils with autism while the teacher focuses on the rest of the class, meaning that those individuals supporting the pupils with highest needs are the least qualified. Therefore in terms of implications, it is recommended that teachers should work with the pupils with the highest needs and TAs should be working with those who need less support. One reason we are currently seeing the opposite may be that pupils with SEN have the lowest priority for teachers due to targets; that is, the priority dictated from above is on achieving results instead of accessing learning, so that is where the resource is focused. This will be difficult

to change as it will require a major shift in thinking and it will need to be supported by headteachers, SENCOs, Ofsted etc, however it seems critical that this begins to change. Similarly, there is a need for ongoing support for teachers and TAs in terms of autism training and how to adapt their teaching for pupils with autism. Currently there is minimal provision for school staff in terms of support around, for example, differentiating work, and teachers would benefit from additional mentoring around how to work with their TAs. Furthermore, it is recommended that there should be more training around autism in teacher training courses, as currently the SEN module is minimal and does not reflect how big a part of everyday teaching this is, especially as we see increasing numbers of children being diagnosed with autism. This implication also reflects the findings of the APPGA (2017).

Another important implication is around whole school approaches; it is

recommended that schools consider implementing strategies that benefit pupils with autism across all classes and years. Therefore if schools are doing movement breaks or teaching emotion regulation etc, they should do this for all students as it will significantly benefit everyone, and is also a more efficient way to deliver such interventions. Another clear implication of the current research is that all boroughs/areas should have a specialist school outreach service. Participants reported this to be a key source of support, however most areas outside borough do not have a service like this. This will require more funding and resources which means it needs to be a higher priority (as discussed below).

Mesosystem

One common idea was for CAMHS to remain involved post-diagnosis, to provide regular follow-ups and to signpost or provide support where necessary. Currently, CAMHS

are not commissioned to perform this role, and therefore parents have to rely on GPs and schools to coordinate support, who often lack the necessary knowledge to do so. Therefore one clinical implication of this project would be for commissioners to consider expanding the role of CAMHS to provide care coordinators who could provide families with ongoing check-ups and help coordinate support as appropriate. This would be closer to what is currently recommended in the NICE guidelines. It is worth noting that those children with SEN should be having regular reviews, however this is again through schools who

themselves are struggling with a lack of resources and often a lack of understanding and knowledge about autism. Thus, many of the participants in this study believed that the role of coordination should shift from schools to CAMHS, recognising that this would require additional investment to expand CAMHS services. One initiative which is ongoing is having CAMHS link workers in schools, however these are often under-resourced roles, they do not cover private schools, and many boroughs outside of borough do not have this system in place. Additional funding for this initiative would help CAMHS to support schools with coordinating support in the meantime.

Some school staff believed that some of the recommendations from other professionals were unrealistic for them to implement in the classroom. Thus one clinical implication is that school feedback meetings (between CAMHS and school) should be a collaborative meeting to think about how to meet pupils’ needs given the resource that the school has and what is realistic for the school to implement. Often this may involve thinking outside the box, and if there is a local specialist school outreach service they should be involved in helping the school to think flexibly about how they could utilise their existing resources. Some staff recommended that schools are given additional funding to employ

learning mentors, and it may be that, while in an ideal world pupils with autism may have an individual learning mentor (if needed), that in reality this is facilitated in a small group, as many schools have lost the funding for learning mentors in recent budget cuts.

Another important implication is the impact that language can have on people’s ability to obtain support, with terms such as ‘high functioning’ and ‘low need’ affecting the ability to access certain support. There are initiatives by service users to move away from this language, and borough CAMHS have moved away from the term ‘high functioning’ as they acknowledge that it often undermines a person’s difficulties and may even limit support. However, the term ‘high needs’ is still used as it helps many people access support such as EHCPs or special educational provision. One issue highlighted in this research was schools using CAMHS’ words such as ‘low needs’ to deny support, so the recommendation is that CAMHS should add clear and explicit explanations to all their reports so that schools understand what is needed and pupils are more likely to have their needs met

appropriately. It should also be indicated clearly that the level of need can change in either direction over time.

Exosystem

One finding of the current research was that there is a lot of confusing information available to parents and as a result parents often do not understand what support they are entitled to, what support is available or what support their child needs. In the past it was easier to obtain a statement of special educational needs (this had 6 bands, from 1 lowest need to 6 highest need), but the new system of EHCPs applies only to children who would have had the highest level of statement in the old system. Furthermore, EHCPs do not

automatically come with additional funding except for the children with the highest needs – an EHCP means this child’s needs are over and above what a school can be expected to provide using their internal SEN budget and existing resources. Where this is not the case, the school are still expected to make reasonable adjustments and adaptations, and to differentiate the curriculum for children with SEN, using their SEN budget where needed. Much of this information is not known to parents, who believe that support is being withheld and the only way to obtain it is via an EHCP, which they may well be rejected for. Indeed many parents believe that if their child does not have an EHCP it means they will not be receiving any support. Therefore an implication of this project is that parents should be provided with such information so that they better understand the system and can adjust their expectations, easing the pressure on schools and services, and potentially saving parents’ energy as they stop fighting for support that they are not entitled to. One issue here is which service provides this information to parents, and this may fall to SENDIASS or school SENCOs if possible. Another issue is that the SEN budgets have been cut in recent years, so some people will continue to see EHCPs as necessary purely for the additional funding that they might attract and not because they are needed, and this may continue to be an issue until appropriate funding is provided for SEN pupils.

Another recommendation which emerged was that many parents would like there to be some kind of central hub/link service where parents can find out what support is around and how to access it. Currently, there are many services involved and both parents and professionals often find this confusing. An implication of this study therefore is that a centralised hub is developed to fill this role. This service could be run by SENDIASS, an independent service commissioned by the local authority designed to support parents of

children with SEN up to age 25. Again, this may require additional funding for the SENDIASS service, a common issue which is discussed later in this section.

Macrosystem

One of the most obvious implications across the whole project is underfunding and the negative impact this has on services. Many parents experienced that each service they accessed, although helpful, was underfunded and under-resourced; it is not necessarily that these services need to change drastically, just that they need more funding and resources so they can provide more of that service. While it is recognised that there is no ‘magic money tree’, the implication is that, at a national level, autism is not a priority for funding, and this needs to change. It is hoped that by increasing autism awareness, it will become a higher priority for funding which would trickle down and facilitate many of the above

recommendations.