World Autism Awareness Week

Pauline Latham Excerpts

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.

--- Later in debate ---

[Mrs Anne-Marie Trevelyan (Berwick-upon-Tweed) (Con)]

I congratulate my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) on securing the debate and on her tireless work over many years to raise awareness of autism and to start to change Government priorities around those in our country who are not neuro-typical beasts.

My hon. Friend the Member for Bury St Edmunds (Jo Churchill) and the hon. Member for Argyll and Bute (Brendan O'Hara) have described movingly some of the experiences of families and those who suffer from autism. As my right hon. Friend’s Autism Act 2009 was going through the House, I was battling to find support and a diagnosis for my eldest young son. It was evident to me that my very bright and articulate son was not like other boys of his age. He had an extraordinary level of concentration and extremely good reading skills and could converse at length with adults in a most unusual way, but he was also very anxious, fearful of noise and bright lights and unable to cope with anything unexpected in his day—the slightest change to the time we left the house, and all hell broke loose.

Once my son started his schooling, at the age of three, his young life and day-to-day experience became increasingly more challenging, and school life, which demands conformity, became something he was entirely unable to cope with. We struggled on for several years, because no one seemed to have any ideas; teachers said nothing except, occasionally, “Well, come and pick him up early if it gets too much”, “Is it all right if I call if he’s getting difficult in class?” or “Will it be all right if I don’t feed him with everyone else because it seems to be a problem in the canteen?”. I was just a mum with a little boy who seemed to have so many talents but could not cope with daily life.

Eventually, my GP, a wonderful man, referred us to a child psychologist in Newcastle, whose failure to correctly diagnose my son as autistic was nothing short of shocking. Not only did he fail to see what was becoming obvious to our family and our friends, who were trying to support us, but he tried to medicate my son with Ritalin, claiming that he suffered from attention deficit hyperactivity disorder—two behavioural traits entirely absent from my son’s behaviour. The doctor had failed to speak with my son’s teachers, having claimed that he had, before making his diagnosis, and it was only because I fought back against the medical profession’s failure that my son was not inappropriately drugged.

Thanks to huge financial support from my family, we eventually found a team of paediatric doctors based at Great Ormond Street hospital in London, 350 miles from our home in Northumberland, who quickly diagnosed my boy as an Asperger’s syndrome sufferer. We received support, understanding and guidance from these wonderful specialists who empowered us, James’s parents, to challenge school rules and regulations in order to get the changes to his learning environment so that he could once again enjoy and thrive in it. We have encountered two or three teachers for whom medals would be inadequate to recognise how they have put themselves out and learned themselves what it means to be an autistic little boy so that they can help other children coming through the system afterwards. As I say, medals will never be enough for them.

Without good friends, good luck and financial support, I know that our son would have fallen out of school by the time he was six or seven. The pressures that normal life put on our autistic children should not be underestimated. No right-thinking person would ask a child with a broken leg to run up the stairs, but the invisibility of autism means that these children are asked to do things that, given their hypersensitivities or gaps in neurological connectivity, simply ask too much of them.

[Pauline Latham]

My hon. Friend’s son was extremely lucky because he had a mum who was prepared to fight and had the ability to fight. There are many parents like her who will fight for their children, as most parents want to do. However, some parents do not have the ability or the confidence to do that, and these are the ones that are really being let down by the system.

[Mrs Trevelyan]

I absolutely agree with my hon. Friend. This is part of the reason I am here. I decided that advocacy was needed for those who are unable to access the system, who do not know how to fight back or who are too honest and quiet folk trying to get on with their day, muddling through it with difficult jobs and complex family environments. For such people it is too hard to fight what still today seems to be an implacable system in so many parts of our country.

The legislation of my right hon. Friend the Member for Chesham and Amersham—the Autism Act 2009—has begun to change attitudes towards autism, and I am now 10 years on from the battles I had to fight. The general population is becoming aware, slowly, of this invisible disability. The challenge is its invisibility—until it becomes visible through a crisis.

Many of our greatest artists and scientists have been on the spectrum—men and women who see the world differently from those of us who are “neuro-typical”, as my son always refers to me—mostly as an insult, I suspect, but I take it as it is! As a nation, we should value those who offer an understanding of our world that we neuro-typical folk simply do not have. They are vital to our growth as a nation, both culturally and economically.

The genius of the great Alan Turing brought us the computer—possibly the greatest leap since the steam engine—yet he was shunned and misunderstood throughout his life. We can read about his school years, which were truly awful. The damage that society inflicted on him through a lack of understanding and a blatant disregard for his difference in character highlights what we must reverse, 70 years on, to ensure that no child on the autistic spectrum is lost to us or our nation.

Small changes to the school environment and support for families that are bringing up autistic children with day-to-day tasks, which can reduce their stresses, can lead to positive and thriving outcomes for these wonderful members of our communities. Most importantly, we need a team of paediatric experts across every part of our country who can diagnose autistic children early on, and we need councils and schools that are trained and flexible in supporting these children to fulfilling lives.

I recently met a family in my constituency with three boys, two of whom have been diagnosed. I also have in Alan Carrick, at Northumberland County Council, a passionate advocate for all our special needs children, and he is particularly interested in supporting those on the autistic spectrum. It is difficult for him to meet the needs of each and every autistic child because there is not enough flexibility for him to provide preventive and creative solutions for individual families, which would provide practical support.

If we can reduce the day-to-day pressures on parents through low-cost early interventions, we will increase the chances of these families staying together. There are obvious long-term, value-for-money arguments for investing in these families early on to stop long-term costs to the state of family breakdown if we fail these children and their families at the early stage. I call on our Government to encourage our councils to be creative and forward thinking in their support for our autistic children—most urgently of all by getting speedy diagnosis so that support can hopefully follow.