World Autism Awareness Week

Debate between Pauline Latham and Hannah Bardell

Thursday 28th April 2016 Commons Chamber

[Pauline Latham (Mid Derbyshire) (Con)]

I congratulate my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) on securing this important debate. I realised the importance of this subject just before the last election when I met a group of parents in my constituency who were talking about the problems that they had experienced. I had previously met people with autism, but I had not understood the pressures that parents and families are put under by the diagnosis, or even by not having a diagnosis of their children’s problems.

I met people who had never received a diagnosis and did not think that they would get one because nobody seemed to recognise that their child had autism. However, it was clear from what they said that the children in question were suffering from a form of autism, although it had never been recognised. Those parents were at the end of their tether and did not know where to turn to next. It is not just mums who have this problem; there were also a lot of dads at that meeting. It is not only about children; it is often adults for whom even less support is available. Whole families are affected, and autism can cause such a big strain that it affects the parents’ marriage or partnership. Many of those situations break down when people have one, two or even three children with autism.

I want to focus on local situations in Derby and Derbyshire, where I feel that the system is failing children who need the diagnosis and help in schools. Through an active group in the area—particularly in Spondon—I have met many people who have autism or whose children have autism. Last year and this year the cathedral has been lit up blue to highlight National Autism Week and to show people that there is a problem in that area. I commend it on that.

[Hannah Bardell (Livingston) (SNP)]

The hon. Lady is making interesting and powerful points and has mentioned the problem that people with autism face. In my office I have employed someone on the autistic spectrum. Does the hon. Lady agree that we need to change the narrative in some respects, because people on the autistic spectrum have specialist and incredible skills, and it is so important that we are positive about those people and the opportunities that they provide to society?

[Pauline Latham]

I completely agree. There are some incredible people with autism, but I am talking about the problems that they need to overcome to access proper education and help for themselves and their families. We must focus on the fact that it is the system, not the people, that is the problem.

In Derbyshire, families have to wait far too long between getting a referral for autism spectrum disorder and a diagnosis. Local authorities need better training for local authorities and schools regarding education, health and care plans and dealing with ASD pupils. We need a better transition from special educational needs statements to the new EHCP, and that has been badly managed in my area.

ASD behaviour and management strategies should be a mandatory part of the teaching qualification for teachers and teaching assistants. There also seems to be a lack of knowledge by parents on the legal rights and services available to them as a family dealing with autism, and we as a society need to recognise that and put out more information for those who are dealing with autism. Guidelines from the National Institute for Health and Care Excellence recommend a maximum of three months between a referral and first appointment for an autism assessment. It has been estimated that in Derby that takes closer to 12 months, which is far too long when a child is having problems with their behaviour in school and needs help now.

The Children and Families Act 2014 mandated local authorities to move from special educational needs statements, which outlined a child’s needs and how help would be given, to an education, health and care plan for each child. It also reduced the amount of time that children with special educational needs had to wait for an education, health and care plan from 26 weeks to 20. However, in Derby city the average wait is 35 weeks, and that is after people have already waited for 12 months. Derby local authority did not make sufficient plans to prepare itself for that change, and it has been on the back foot ever since. Until February 2016, only 12% of statements had become education, health and care plans, which is really unhelpful for families. That gap causes delays in the child’s educational development, and places additional stress on the families caring for them.

I believe that Derby city is now asking schools to complete the education, health and care plans even though they are not meant to, and the training provided to school staff on changes to the law has been labelled by some parents as “diabolical”. Admin staff at schools do not understand the difference between a special educational needs statement and education, health and care plans, because they often copy and paste them. Without an EHCP, children on the autistic spectrum disorder are managed by inexperienced staff with a fundamental lack of understanding of ASD.

Derby city local authority has to employ consultants who know what they are doing to help make changes, but they cost four times as much as usual school administrative staff. When all local authorities claim that they are short of money, that seems to be a complete waste of money, although if it gets the process completed more quickly for families and children with autism, it is obviously better for them. However, that money could be better spent on mental health care for autistic children and their families.

If local authorities consistently ask schools to carry out the care plans, as is happening in Derby, we must ensure that schools are given the necessary funds and training for that. There is no obvious legal accountability if deadlines are not met. We must support the parents and siblings of children with ASD. Early diagnosis is key to avoiding the mental health problems associated with not knowing what is wrong and being able to deal with it, and we must move faster to help those children and families to deal with their problems.