Written evidence submitted by the National Autistic Society
Submission to the House of Commons Education Committee from the National Autistic Society
Inquiry: Impact of COVID-19 on education and children’s services
- Autism is a lifelong disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a spectrum condition, which means that, while there are certain difficulties that everyone on the autism spectrum shares, the condition affects them in different ways. Some autistic people are able to live relatively independent lives, while others will need a lifetime of specialist support. It affects more than one in 100 people in the UK.
- The National Autistic Society is the UK’s leading autism charity. Since we began more than 50 years ago, we have been pioneering new ways to support people and understand autism. We continue to learn every day from the children and adults we support in our schools and care services. Based on our experience, and with support from our members, donors and volunteers, we provide life-changing information and advice to millions of autistic people, their families and friends. We also support professionals, politicians and the public to understand autism better, so that more autistic people of all ages can be understood, supported and appreciated for who they are.
- We run a network of autism-specific schools, which provide specialist support to children with complex needs. We support three special resource bases for autistic children in mainstream secondary schools. We also provide education support, training and outreach to mainstream and special schools. In addition, our charity’s Education Rights Service provides specialist advice about rights and entitlements in education for children on the autism spectrum, helps families through the SEND Tribunal process and incorporates a dedicated School Exclusions Service for children and young people on the autism spectrum.
- We have noted the Committee’s terms of reference, and this submission focuses specifically on support for autistic children and their families during school and service closures, and the impact on them of the coronavirus outbreak and measures taken to combat it. We also strongly urge the Committee to consider the need for detailed planning to ensure a smooth return to school for children on the autism spectrum when schools re-open.
- The National Autistic Society is happy to provide any further information that the Committee would find useful, or to provide oral evidence if required.
Autism and the coronavirus outbreak
- The coronavirus outbreak and ensuing lockdown has changed all of our lives and daily routines. While this has been hard for everyone, it is particularly challenging for children and adults on the autism spectrum, who typically experience intense anxiety and extreme unease around unexpected change. Some children do not understand what is happening and why their daily lives have changed; others are highly anxious about the rules surrounding lockdown and about their own or their family’s health. Many autistic people, and parents of autistic children, have contacted us to describe their experiences.
“My name is N and I am 16. I am dependent on routine and structure – needing a rigid plan for each and every day. And now, nothing is clear. I am no longer receiving constant support from CAMHS; telephone calls have been offered but I am deaf so they aren’t accessible. I can’t cope with the uncertainty of all this and feel as though I am stuck.”
- Adjusting to the sudden change in daily lives and routines is a huge challenge, alongside concerns about the availability of special educational support and social care.
- Many children on the autism spectrum were not getting the support they needed before the coronavirus outbreak began. This is detailed in the National Autistic Society’s submission in 2018 to the Committee’s inquiry into support for children with special educational needs and disabilities. They are now struggling more than ever, along with other children and families who have had the services they rely on removed or reduced.
- National guidance has not been at all clear about what autistic children and their families are entitled to. Further, we have observed a substantial disconnect between national guidance and local practice. Even before the Coronavirus Act was passed, we were hearing from families across the country whose autistic children had had their support completely removed. This has all left many children and families unsupported, isolated and struggling.
Impact on children and young people on the autism spectrum
Impact of temporary changes to the law on education, health and care plans
- The impact of lockdown and school closures on children on the autism spectrum, and their families, has been huge. Autistic children across the country have been left without the educational support and therapies they need, and families are increasingly struggling as the lockdown continues.
- Guidance from the Department for Education states that a risk assessment should be carried out for every child who has an education, health and care (EHC) plan, with input from their family, to determine whether individual children are safer to be at home or at school during this period. But families tell us that risk assessments are not always being carried out, and they are struggling to cope at home. We hear regularly about a disconnect between the guidance the Government is giving to local authorities, and what is happening in practice in local areas.
“My son is almost five. He’s thriving with an EHC plan at a mainstream school where he was receiving 1:1 support and coping well. Since COVID, he’s been unable to attend school, despite his dad also being a key worker. A risk assessment was conducted and they are unable to maintain social distancing measures with him; he doesn’t understand the rules and due to sensory needs puts toys and other objects in his mouth. He’s been home now for over three weeks and is regressing to speech and behaviours we’ve not seen in nearly a year. He is self-injurious and lashing out in frustration due to the huge damage to his safe routine… There should be more government support for families with autistic children during this crisis. It is isolating, traumatising and with no end in sight a real worry for parents of children who already need additional support with their education and care.” – Parent of autistic child
- Central to the provision of ongoing educational support is the definition of what constitutes a ‘vulnerable child’. But the official definition has been unclear. The definition encompasses both children who have a social worker and children who have an EHC plan. Many children who have an EHC plan will have a social worker, because their disability makes them a ‘child in need’ under the Children Act 1989. But while every vulnerable child should have the opportunity to attend school during the lockdown, this is not necessarily the case with every child who has an EHC plan. While the Department for Education has recently clarified this, it could and should have done so earlier, to enable schools to plan provision and families to understand what should be provided for their child.
- We are seriously concerned that, under a temporary modification to the law enabled by the Coronavirus Act 2020, local authorities no longer have a legal duty to make sure that children with the most complex needs receive the provision set out in their education, health and care (EHC) plan.
- We heard from many families that even before the Secretary of State published his modification notice on 30 April, their children were receiving very little, or no, support. Worryingly, some local authorities were telling parents that the law had changed even before this had come into effect. Although the changes are temporary, their effects are likely to be long-lasting on children with the greatest needs.
“Parents have been told that their new applications for EHC plans cannot continue and the council is not accepting any new EHC plans.” – From an email to the National Autistic Society from a local parents’ group in April, several weeks before the Secretary of State’s modification notice was published.
- The downgrading of a local authority’s duty to deliver a child’s EHC plan to an expectation that they will make ‘reasonable endeavours’ to do so sends a message that this support is not crucial and can be de-prioritised. However, we know from long experience that if support for children with SEND is not a legal requirement, it is unlikely to be provided and children’s needs will escalate as a result.
- Further, it remains very unclear what is meant in this context by ‘reasonable endeavours’. Before the Secretary of State issued the modification notice, we believe he should have spelled out clearly what schools and local authorities should do to support autistic children during this period and what parents could expect.
- While the guidance that accompanied the legal changes gives examples of potential mitigations or alternative support, it does not clearly explain what constitutes ‘reasonable endeavours’. The alternative support measures described in the guidance require funding if they are to be delivered to children and young people. For example, the guidance says that there should be advice and support from specialist teachers in autism for parents whose children are not in school. In reality, there are not enough resources locally to make this happen widely.
- The SEND system was already under considerable pressure, as identified by this Committee in a recent wide-ranging inquiry, and there is a real risk of local services disappearing. There has been no impact assessment on the effect of the lockdown or the legal changes on children with SEND. Many children and families have lost the support they relied on, including vital therapies such as occupational therapy, speech and language therapy and mental health support. Many of them are scared they will never get these – often hard-fought-for – services back again.
- The Children’s Commissioner shares our concern about the downgrading of duties of councils towards children with EHC plans. We agree with her that the Government and local commissioners should set out their reasons and evidence for implementing or making use of the changes.
- We believe it is imperative that children’s rights to educational support are restored without delay, and that the modification notice does not become a monthly occurrence. The Government should also publish an assessment of the impact of these changes on children’s rights.
Impact of lack of support for children who do not have an EHC plan
- While children and young people who have an EHC plan are in many cases not currently receiving the provision their plan says they need, autistic children who usually receive SEN Support in school have largely fallen into a gap in provision and been left without any additional support at all.
- These children are mostly at home (unless they are deemed to be particularly vulnerable, or have a parent who is a key worker), and parents tell us they are unable to provide the specialist support their child may receive at school to enable them to learn. Parents are concerned that their children will fall behind during this period and their mental health will be affected.
“He is unable to work at home. Home is home and school is school, like many other SEND kids.” – Parent of autistic child
“They have set up some home learning which he isn’t really connecting with as home is home, school is school.” – Parent of autistic child
“She has no EHC plan, is performing academically four years behind her peers (in mainstream school), has secondary cancer and is getting a welfare call once a week and work sent home that she can’t do. She has been told to stay in her room as she is high risk. We are dealing with huge meltdowns and daily verbal abuse. This is all caused by anxiety, uncertainty and no routine.” – Parent of autistic teenager
- Children on the autism spectrum who do not have an EHC plan but rely on SEN Support need additional help and support, but they are being missed out. They will also need support to prepare for returning to school. Schools must be prepared in advance for this with all necessary information and resources.
Impact on wellbeing of children and families
- Many families who have a child on the autism spectrum say they are struggling with the disruption to their usual routines (often painstakingly created) and the disintegration of their support networks (often hard fought for). Families of children who have high levels of need, or whose behaviour is challenging, report a lack of access to support services and respite provision and are having to cope alone at home.
“One of our parents has had her 19-year-old sectioned last week. He couldn’t cope with the confinement of being at home. Ran away several times and was eventually picked up 25 miles away sitting on a bridge.” – From an email to the National Autistic Society from a local parents’ group
- Families urgently need more specialist input for their children from teachers and therapists, as well as regular breaks from their caring responsibilities.
Preparation for return to school
- Children and young people on the autism spectrum struggle particularly with uncertainty and changes to their usual routine. The coronavirus pandemic, and the measures taken to combat it, have been hugely disruptive – and the transition back to ‘normality’ has the potential to be just as difficult. Families need to prepare their children for schools reopening, and schools need to prepare carefully to reintegrate children who are autistic.
“How are my children going to cope with going back? My eldest son, if stressed, can get very aggressive through no fault of his own. My youngest son only just started to build his confidence in school. He used to cry every day. I worry that all that progress will be gone. I think for many parents with autistic children the greatest fear is will their children cope going back to school, or will they need home schooling. I hope there is the funding to help all children settle back to school and give them support if they need it.” – Parent of two autistic children
- There is a risk that all the changes and uncertainty will increase many autistic children’s anxiety. Anxiety can manifest itself as behaviour that is perceived as challenging, which then increases the risk that anxious autistic children will be excluded from school for behaviour that they cannot control, if they do not receive the support they need. The judgment in an Upper Tribunal case two years ago on this point still has not been communicated to schools by the Secretary of State.
- National exclusion statistics, when they are published later this year, will inevitably reflect a dip in school exclusions during the time that schools are closed to the majority of children. It is well documented that children on the autism spectrum, and with other special educational needs, are at increased risk of exclusion from school. There is a risk that, if there is a sharp rise in exclusions of children on the autism spectrum when schools return, this may be overlooked in the annual figures.
- Some parents report that their children are more relaxed at home and less stressed than at school, which may reflect their unhappiness or lack of support at school. As a consequence, many autistic children and young people will be very anxious about going back to school, and will need a lot of support in order to return. The current situation presents an important opportunity to look at how to make the school environment easier for children and young people on the autism spectrum. The Autism Education Trust has a number of resources for schools and families on school stress and anxiety and successful reintegration for pupils who have been away.
- In addition to creating an environment that works for autistic students, schools run by the National Autistic Society – like many other special and mainstream schools – are concerned about providing a safe environment and protecting the health of all staff and students. In particular, schools want to make sure – and parents want to be reassured – that they have all necessary personal protective equipment (PPE), and that they are able to comply with social distancing requirements. Both of these things are particularly important in special schools, where some children will need close personal care and social distancing is difficult to achieve, because of the limitations of space and the fact that some children do not understand what is required and why. It will not be acceptable for these children for a lack of PPE to be a barrier to their education.
- The Department for Education must make sure that schools understand the particular needs of autistic children returning to school with clear guidance. This must also set out that autistic children are not punished for behaviour that is driven by anxiety about change and uncertainty in their daily lives. The Government should also ensure that PPE is available for all staff who provide personal care to children in schools, and should publish detailed guidance for on how social distancing should work and what is expected of schools.
 The NHS Information Centre, Community and Mental Health Team, Brugha T et al (2012), Estimating the prevalence of autism spectrum conditions in adults: extending the 2007 Adult Psychiatric Morbidity Survey, Leeds: NHS Information Centre for Health and Social Care.
 Department for Education (April 2020), Coronavirus (COVID-19): SEND risk assessment guidance.
 Department for Education (May 2020), Guidance: Supporting vulnerable children and young people during the coronavirus (COVID-19) outbreak – actions for educational providers and other partners.
 Department for Education (30 April 2020), Modification notice: EHC plans legislation changes.
 Department for Education (30 April 2020), Guidance: Changes to the law on education, health and care needs assessments and plans due to coronavirus.
 Asbury K et al (April 2020), ‘How is COVID-19 affecting the mental health of children with SEND and their families’, Department of Education, University of York.
 C & C v the Governing Body of a School, the Secretary of State for Education (First interested party) and the National Autistic Society (Second interested party) (SEN)  UKUT 269 (AAC).
 Department for Education (May 2019), Timpson review of school exclusion.