World Autism Awareness Week

Lord Elliott of Ballinamallard Excerpts

Thursday 28th April 2016 Commons Chamber

[John Howell (Henley) (Con)]

It has become de rigueur in this debate to congratulate my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan), and I am absolutely delighted to congratulate her on initiating this debate and on her excellent work on the Autism Act 2009, which was also mentioned by my right hon. Friend the Member for Clwyd West (Mr Jones). I also congratulate her on all the work she has done with the all-party parliamentary group on autism.

I became aware of autism through a lot of activity in my constituency. Towards the north of the constituency, there is a big autism unit in the village of Chinnor. We also have facilities at Thomley Hall in the very north of the constituency, and it is a marvellous place to go to. The organised chaos there is wonderful to see, and it is a great privilege to be part of that and to see the enormous efforts being made by the staff to look after people with autism. In the south of my constituency, around Henley itself, we can see the work of Dame Stephanie Shirley and others.

I would like to pay tribute to a charity in my constituency called Music for Autism, which has spotted a link between music and autism. It is organised by the Orchestra of St John’s, many of whose members spend hours of their time, freely given, going into schools and other places and working with children with autism in order to show the calming effect of music on them and the enormous ability of music to take them forward to the next stage of their development. I pay tribute to them for doing that.

I want to make two points in the debate. They have already been made by other speakers, but I think it is worth reflecting on them and making them again. The first relates to diagnosis. The difficulty with late diagnosis is that people do not know what their situation is. The advantage of early diagnosis is that they are better able to understand the behaviour involved and how the role of partners can influence the way in which we look at people who have had the diagnosis. That is the view of people I have met in my constituency, including a couple I met in a café in Henley who told me about the difficulties they had had with a late diagnosis.

As we have heard, some people are able to lead pretty ordinary lives and manage their condition extremely well. I have met several such people over the years, including a young man I met at the last Conservative party conference who was able to demonstrate that. I agree with the hon. Member for Greenwich and Woolwich (Matthew Pennycook) that public recognition of the condition is not the be all and end all in relation to people’s needs, but it is certainly a good starting point. In order to help people to live a fulfilled life, we need public recognition of the illness. The need for early diagnosis is absolutely crucial, and I urge clinical commissioning groups and NHS England to bring down waiting times in line with the National Institute for Health and Care Excellence guidelines and to work with many different stakeholders to create a more responsive environment of diagnosis and support. Those words were used to describe the situation to me, and I think they do it extremely well.

A significant element is the involvement of health and social care in the care and management of adults with autism. I know that this is a broader point, but it provides a good example of an area in which we need the rapid integration of health and social care within the NHS. It will be much better when all these facilities are together under one roof.

[Tom Elliott (Fermanagh and South Tyrone) (UUP)]

Is the hon. Gentleman aware that, in Northern Ireland, health and social services form a single body, making it much easier to have an integrated approach? However, we still need integration and co-operation with other groups and organisations, and with statutory agencies such as the Department of Education.

[John Howell]

The hon. Gentleman makes a valid point. It is absolutely essential that we achieve that level of integration. We need to start by integrating the medical activities of the NHS with social care in the community, because until they are under one roof we will not have the ability to deal with these problems in the way that will be most effective for people who suffer from this condition.

My second point relates to education. I have a wife who, for many years, taught a young man with autism and struggled to provide him with the assistance he needed. She was remarkably successful in doing that. That was done on a private basis, but the vast majority of children with autism—over 70%—are in mainstream education, and it is there that we have to focus our attention. The teacher training programme needs to include enough information on autism to enable teachers to feel empowered to recognise it and deal with it effectively. If we can do that, we will have a much better chance of purposefully dealing with people with autism.

--- Later in debate ---

[Fiona Bruce (Congleton) (Con)]

It is said that a society is judged by the way it treats its most vulnerable. Among our most vulnerable are children with special educational needs, including those on the autism spectrum. I therefore want to give a voice to just a few of the many parents who have come to me over the past six years, including the Middlewich parents and carers support group, to describe their challenges in trying to get appropriate support for their autistic children. The situation is described by far too many with these words:

“every day feels like a fight.”

Time prevents me from quoting all the material I have available to describe their struggles of seeking often inadequate, slow or no diagnoses; of insufficient teacher training; of a feeling as parents that they have little voice or are inadequate, or worse, not believed; of struggles with bureaucracy, with too many different organisations; of, as one said, being pushed from pillar to post; of funding and resource frustrations; and of being, as another said,

“at a loss as to what to do.”

We need to do better for them.

One says:

“We have two children who have autism and face huge challenges getting the understanding and support they need.”

Another says,

“teachers in my child’s school in charge of special educational needs do not have sufficiently specialised training.”

Another says:

“Teachers are given…very little training. Many teachers have had only half a day’s training to cover all SEN.”

One said that more training is needed so teachers can help older children in secondary school to understand themselves when there may be an onset of distress and how to get help early. Another said:

“my son has had difficulties in school, and what hasn’t helped is that…the educational psychologist and the school, I am being told I should not say he is autistic spectrum…rather…he is a ‘complex child with complex needs’. The letter from the community paediatrician does say he has a diagnosis of ASD”.

One mother, like a number of parents, says:

“all the experts in the field of ASD would tell you that children can hold in their anxieties and control their behaviour at school, in order to ‘fit in’; but when they come home to an environment where they can be themselves, they act completely differently.”

Another said:

“I had three uniforms for him. These were all ripped when he returned home due to what had gone on during the day.”

Yet doctors often listen more to the opinion of teachers than parents. Another parent said that parents are made to feel that they are not believed—that they are

“bad parents and trouble makers. Yet what parents would want to go to so much effort to ‘pretend’ that their child has a disability?”

Another said that, as we have heard:

“The diagnosis process is not working…waiting times for diagnosis are too long…some children are being deliberated over for too long or even discharged, when there is clearly an issue which requires diagnosis.”

Another said that too much attention is paid to the opinion of teachers and not enough to parents. One mother told me she has spent three years trying to get her son statemented, but because they did not have a statement they could not get any support at primary school because money comes with the statement. He is now 12, at senior school, and has ASD as diagnosed by a paediatrician but is still not statemented.

[Tom Elliott]

One line from one of the parents the hon. Lady has mentioned has captured what this debate is about:

“every day feels like a fight.”

We have talked about this for so long. Surely there should be more progress to try to get more co-operation between the statutory agencies and Government Departments to ensure that every day is not a fight for parents and for those affected.

[Fiona Bruce]

The hon. Gentleman is correct. As long ago as 2009, following the Autism Act 2009, the Department for Health published an autism strategy that focused on five core areas of activity, one of which was the importance of

“developing a clear, consistent pathway for diagnosis in every area, which is followed by the offer of a personalised needs assessment.”

That was for adults. How much more important is it that this happens for children, and at the earliest possible age and stage? Waiting times for assessment should follow the NICE guidelines of three months. That is a long time in a childhood; three years is an eternity.

One parent wrote that when diagnosis occurs there needs to be a greater understanding of the different ways in which autism presents itself between girls and boys. She said that

“there is not enough knowledge about girls on the spectrum...It is now recognised there are far more girls with ASD than previously thought. Girls develop the ability to mask their condition much more effectively. However, this knowledge is not being passed through the system. Far more training is needed for…professionals in the field, to ensure that our girls get equal access to assessment and diagnosis...my son was diagnosed locally by the paediatrician, yet the same doctor had quite evidently decided my daughter was not on the spectrum, without really investigating the possibility...So I had to take my daughter privately to a psychologist who was much more well informed...this needs to be addressed…we are doing our girls a disservice at present.”

Another said that autism is a spectrum of conditions and every one requires an individual solution, particularly as autism can be accompanied by another condition. As we have heard, a further problem arises when, as parents tell me, their child reaches late teens and falls between child and adult care. One mother told me that children with autism have an adolescence lasting 10 years longer than anyone else, but at 16 to 18 schools and colleges stop talking to you, but your child still needs support for a very long time. Another said:

“there are so many stumbling blocks on the way”

that it is no wonder that some of the children end up in the juvenile justice system, or self-harm.

Then there is the problem of employment. A mother told me of the struggles she is having trying to find employment for her son with mild Asperger’s syndrome. There is no support available and there are huge levels of ignorance among potential employers.

Given the right help, appropriate support can be really effective. Surely, we want for every child, including those with autism, the best start in life, and it can be achieved.