Letter to schools and local authorities

To whom it may concern,

The following information is provided by the National Autistic Society. It is being shared with you because you have recently sought to either withdraw or deny support for an autistic young person in relation to needs relating to demand avoidance.

We would like to make clear that our advice is that all support must be tailored to a child's individual profile, taking into account all their characteristics including demand avoidance, which has implications for the development of appropriate and personalised support.

Our Demand avoidance advice and guidance page states: "It is important that people experiencing persistent and marked demand avoidance are recognised and supported using strategies and approaches personalised to their specific strengths and needs. Research suggests that the understanding and acceptance of demand avoidant behaviour is fundamental to accessing the right support." While support for people experiencing demand avoidance is unfortunately under-researched, the 'Support strategies' section of our page lists strategies informed by professional practice and lived experience gathered during our evidence review process (these resources can be found listed at the bottom of the page under the 'Article sources' tab).

It is critical that this principle is properly understood and that neither the lack of research nor our content update (to replace a page titled Pathological Demand Avoidance with a new page titled Demand avoidance) is used as a pretext for the withdrawal or denial of support. This position is also backed up by SEN legislation.

State funded schools, colleges and pupil referral units (PRUs) have a statutory duty to ‘use their best endeavours’ (Children and Families Act 2014, s66) to “secure that the special educational provision called for by the pupil’s or student’s special educational needs is made.” The law refers to ‘special educational needs’, so not ruling in, or out, any particular diagnosis. This applies to those pupils/students who have special educational needs and disabilities (SEND), but not necessarily an education, health and care (EHC) plan.

The SEND Code of Practice: 0 to 25 years (which is the statutory guidance for organisations that work with and support children and young people with special educational needs and disabilities) sets out four broad areas of special educational needs that schools/colleges have a duty to use their best endeavours to provide for. These are: Cognition and learning; Communication and interaction; Social, emotional and mental health difficulties; and Sensory and/or physical needs. Support with demand avoidance is clearly covered by one or more of these categories.

For those with an EHC plan, there is a statutory duty on the local authority (LA) to ensure that all of the special educational provision specified in Section F of the plan is put into place for a pupil/student. The special educational provision specified in an EHC plan must, by law, meet all of the special educational needs specified in Section B of the plan. Again, there is nothing in law that requires the child or young person to have any particular diagnosis or for any particular wording to be used, such as ‘pathological demand avoidance’. Section B of an EHC plan must set out all of the identified special educational needs (whether they are collectively called anything or not), and Section F must then specify all of the special educational provision to meet those needs, and there is a legal requirement (on the LA) to ensure that provision is made (Children and Families Act 2014, s42).

Given this, and that the latest research shows only 26% of autistic pupils said they feel happy at school and that almost three in four parents (74%) said their children’s school place did not fully meet their needs, I would urge you to engage in good faith with the family or carer who gave you this letter and seek to identify how you and your school can provide the support required, including for those needs that relate to demand avoidance.

Caroline Stevens
Chief Executive Officer
National Autistic Society