Autism

Lord McCrea of Magherafelt and Cookstown Excerpts

Tuesday 20th November 2012 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Member for South Swindon (Mr Buckland) for bringing this matter to the House and for the compassion and knowledge that he portrayed from his own personal experiences. It is good to have such debates because they focus a lot of attention on issues to which we can all relate—in my case, not necessarily as the hon. Gentleman and the hon. Member for Stalybridge and Hyde (Jonathan Reynolds) did but through interaction with my constituents and what they tell me.

I have been involved in the support of autism for many years in Northern Ireland, as have my hon. Friend the Member for South Antrim (Dr McCrea) and the Northern Ireland Assembly. Our constituency work brought us into contact with those who have autistic children and those who care for them. The hon. Member for South Swindon neatly put the issue into perspective when he mentioned all the emotions that people go through, as do the constituents who come to see me. These wee boys and girls react in the same way as others except that they are a wee bit more energetic. That might simplify the situation but it is the way that I would look at it.

I want to give an example of one wee autistic boy whom I know very well. His parents do everything for him—they wash, cook, dress and feed him, and clean, bath and toilet him. The mum and dad do all of those things for their wee boy. They amuse him and hug, kiss and love him. He depends on his parents for his every need. When he is at school, they do the washing, ironing, cleaning and shopping, and they try to find time to work in order to pay the bills. That is what having an autistic child means—their parents have more to do than those of other children.

They love their son with all that they have—every bit of their love—and all that they are but, sadly, love is not enough to get the family through the sheer exhaustion and the emotional and mental strain. I have seen clearly the emotional and mental strain on those constituents I have spoken to and those parents of wee boys and wee girls whom I have met. There is a financial strain, an emotional strain and a physical strain, and all those things are sometimes overwhelming. That is why I am very pleased to be able to contribute to this debate. Perhaps, in a small way, it will lead to support for those people.

Every Member who has spoken so far has brought their knowledge and experience to bear. It is almost as if everybody has brought an ingredient to the master chef, the Minister, who will put them in a big pot, mix them all together and produce a lovely, palatable meal. I am sure that that is not how it will be done, but we look forward to his response. We as elected representatives can do many things to help young boys and young girls in our communities, but we also have to support them and offer them the best that our society can give to ensure that they do not reach the point of no return.

I do not know whether the Minister and other Members know about the Northern Ireland perspective, but if they do, that is good. I believe that we in Northern Ireland—I say this respectfully—lead the way on autism. The hon. Member for South Down (Ms Ritchie), who has just joined us, was involved in the Northern Ireland Assembly’s autism legislation, so the three of us—she, I and my hon. Friend the Member for South Antrim—have an interest in the issue and contributed to that legislative change. The Assembly introduced the Autism Act (Northern Ireland) 2011, which is the most comprehensive autism and single disability legislation in the whole of Europe. I do not say that lightly; if hon. Members check it, they will see that that is the case.

I want to explain how all three of us contributed to that development at the Assembly. The Act is the first piece of legislation in Northern Ireland that requires all Government Departments to plan and work together on the delivery of a strategy. The strategy is unique, because it addresses the challenge of a five-party, power-sharing Executive working together across the whole of society to try to introduce something that works. I have to say that that is not the case in this House, but I hope that it will be with the draft Bill. Perhaps the House could take that message on board. I think that legislation similar to that which exists in Northern Ireland should be implemented here, and I hope that it will be when the time comes to debate the draft Bill.

Although I am aware that Northern Ireland legislation is unique, this place has to consider it and its relevance to all the other countries that make up the United Kingdom. I am happy that Northern Ireland has seen the need for and led the way with ground-breaking legislation.

Autism NI was at the centre of the campaign for the 2011 Act and used a grass-roots campaign. There was no money or external lobby company, just hard work and determination to gain support from every Member of the Legislative Assembly. It approached that by having autism ambassadors and health and education spokespersons from all the parties in order to build up expertise on issues of concern and bring everything—the ingredients that I mentioned earlier and other contributions —together. It also formed a partnership with Autism Cymru, which was already working with the Welsh Government on implementing a Wales autism strategy, and that formed the foundations of the Celtic Nations Autism Partnership, which also includes Scottish Autism and the Irish Society for Autism. We cast our net wide to get all the information. That has led to initiatives in the USA, a visit by the partnership and MLAs to the US Congress, and a visit to the European Parliament to initiate a partnership with Autism-Europe and MEPs on the development of a European autism strategy.

Hon. Members have spoken about the statementing of children. Every week, somebody comes to my office to talk about statementing and the delays in the process. Northern Ireland now has a system that enables the process to run more smoothly than it did in the past. There are still hiccups in the system and wee problems to overcome, but the Northern Ireland Assembly has legislated to put a system in place, with all the parties and all the Government bodies working together.

[Dr William McCrea (South Antrim) (DUP)]

Does my hon. Friend acknowledge that it is vital for the Minister to liaise with Ministers in the Northern Ireland Executive, not only to see what we have done, but to see whether there are things that are not working out as we thought they would?

[Jim Shannon]

I thank my hon. Friend for that comment. We want to exchange our ideas and to ensure that if something is not working right, we do it better. Ministers in Northern Ireland would be more than happy to be involved.

I want to highlight some of the elements that must form the foundations of any autism legislation and that have been implemented in Northern Ireland. The Autism Act (Northern Ireland) 2011, unlike the English autism legislation, is equality driven and lifelong focused. We look at the child at an early stage and as they work their way through school and into jobs, which each of the Members who have spoken have mentioned.

The 2011 Act amends the Disability Discrimination Act 1995 to include those with social communication disabilities such as autism. That supersedes the Equality Act 2010 in Great Britain, which provides recognition only in guidance, not in the primary legislation. We have taken that a stage further. The 2011 Act changes the definition of disability in the 1995 Act so that the entitlement to services of people with autism is no longer measured solely by their IQ or their physical ability. Some of the things that a child or young person is asked, such as whether they can walk from A to B, are ridiculous when trying to assess disability. Access to services and benefits also now relates to a person’s level of social and communication impairment or function.

Previously, disability living allowance was disallowed because autism did not clearly fit into the protections and the definition in the 1995 Act. That is no longer the case. I suspect that all Members in the Chamber have fought DLA appeals for young people who have autism. Ten years ago, it was sometimes extremely difficult to explain to the DLA panel that a certain young fellow or girl needed more care and attention than their brother or sister who did not have autism. It is easier now, because there is a better understanding of autism. We have tried to address that issue in Northern Ireland.

We have placed a duty on the Department of Health, Social Services and Public Safety to act as the lead Government body in producing, reviewing and implementing a cross-departmental strategy for autism. Currently, cross-departmental co-operation is only discretionary. However, we have a strategy in place that brings all the Government bodies together and ensures that they all focus on what it is important to do. We have placed a duty on all Departments to agree a data-collection system to calculate the current and future need for services for people with autism and their families. That helps us to plan for the long term.

--- Later in debate ---

[Mr Williams]

The hon. Gentleman is right and I suspect that our mutual friends in Autism Cymru, which is based my constituency, and Autism Northern Ireland have given us a similar brief about the collaboration between those two groups. Sometimes devolution can be helpful to our colleagues in England if it involves sharing good practice. We do not always get it right, but in this instance we have good examples to share with the Minister today and, in that spirit, I will explain some of those experiences. Like the hon. Member for Strangford, I can speak for my friends in Autism Cymru who would be more than happy to share some of their experiences with the Minister.

The Celtic nations partnership, which is made up of colleagues from Scotland, Wales and Northern Ireland who work together on these matters, has said:

“Developing national autism strategies supported by ring-fenced Government funding for autism is proving vital to improve the lives of people with ASD, and their families.”

Wales has had an all-age strategy for autism for four years. Since it started in 2008 some £12 million has been committed by the Welsh Assembly Government to the implementation of that strategy and, critically, to research into autism. Wales is the only nation with a national autism research centre, and it is based in Cardiff.

All 22 Welsh local authorities have an autism spectrum disorder local lead, and some have specific leads for children as well as adults. A national co-ordinator sits in the Welsh Local Government Association, and a national ASD practice website gives examples and shares practice throughout Wales. In my part of Wales, services and information are provided in both English and Welsh. As part of that process, each local authority has a local stakeholder group, and we should not understate the significance of that. This is about service delivery, people’s experiences and parents talking about their children. As the hon. Member for South Swindon said at the start of this debate, this is not about ticking boxes. Meetings and engagement with stakeholders are important. Every one of those authorities has had a local action plan in place since 2009. They are being reviewed and renewed depending on local need.

I hesitate to quote myself by saying that Wales is streets ahead, but I say that in the spirit of generosity to which I alluded at the beginning of my speech. The challenge is as great in Wales as it is in England, but we have the frameworks and structures in place to assist.

[Dr McCrea]

Does the hon. Gentleman take the point made by the hon. Member for Hornchurch and Upminster (Angela Watkinson) on the necessity of taking respite into consideration as part of an overall package of care?

[Mr Williams]

The hon. Gentleman is absolutely right. The hon. Member for Strangford mentioned the people he has met in his surgeries, and, as I have said, I have attended stakeholder meetings in Ceredigion. We have both heard from parents about the need for respite provision, so that they can recoup their energy and strength to be the parents they want to be.

I have two concerns about the UK situation. I am pleased that my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan), the former Secretary of State for Wales, and the hon. Member for Hayes and Harlington (John McDonnell), have referred to Atos. That is an emerging situation. I should like to emphasise the difficulties encountered by many claimants with autism when dealing with the Department for Work and Pensions and other Departments. There are concerns that work capability assessments, which determine eligibility for employment and support allowance, fail at their core to recognise the difficulties that people with autism face when looking for work and accessing benefits.

Communication difficulties can make face-to-face assessments very hard. People with autism can misunderstand questions and fail to pick up on inference and assumption—they might answer questions only in their most literal sense. Furthermore, interaction is a key problem with autism, so the condition does not lend itself well to a call centre culture. One constituent went without the benefits to which he was entitled for a long time because he simply could not face direct, blunt questions on the telephone without support. I was pleased that the initial work undertaken by Autism Cymru, which is based in Aberystwyth in my constituency, included going independently to Jobcentre Plus in the town to offer support and advice to the DWP staff who give advice to address some of the problems—I appreciate the complexity of doing so.

I commend Autism Cymru for its work with police forces in Wales. Four or five years ago, it developed the ASD emergency card scheme. As we have heard, many individuals with autism have become involved in the criminal justice system as a consequence of their vulnerability or their social and communication difficulties. The idea, which was pioneered in north Wales and Dyfed-Powys and rolled out across Wales, is that somebody with autism produces a card when they come into contact with the emergency services. The card not only informs the emergency service that the person functions on the autistic spectrum, but offers pointers on how communication with them can be advanced.

There are approximately 88,000 schoolchildren in England and 6,000 in Wales with autism. The majority are in mainstream schools. Therefore, every teacher—I used to be a teacher—should expect to teach a child who is on the autistic spectrum. They should also be ready to teach with, or have access to, the appropriate level of expertise. However, the National Autistic Society in Wales tells me that only 47% of parents were satisfied with the level of understanding of secondary school subject teachers. As we have heard, early diagnosis, assessment and intervention are critical. As a former primary schoolteacher—admittedly, it was some time ago now—I remain concerned, like the hon. Member for Stalybridge and Hyde, about the training available to class teachers.

I have not been involved in the all-party group on autism, but I very much endorse its call for a lead teacher in every school with specific responsibility for ensuring equality of access for children with autism. That goes beyond the requirements of a special educational needs co-ordinator. The demands on SENCOs are immense enough without the complexities and range of challenges faced by working with autistic children.

We need to give our teachers the support they need, and I am not convinced that we have done that. Anecdotally, I remember being summoned to the head teacher’s office to be told that a new girl would be joining my class and that she was autistic. I can in all honesty say that, having been a class teacher for three or four years, I had not experienced that in any other classroom. In my years of postgraduate training, I had never come across the term autistic. In fact, special needs education training in those times amounted to four or five hours in one afternoon. Teachers are often aware that they can be failing the children in their care. It is not necessarily their fault—the training needs to be available to support them.

If the debate is characterised by anything, it is the need to raise awareness: awareness not only in Government agencies and education, and—I am pleased to report, as did my friends in Northern Ireland—awareness of the progress in our countries as well. What I am sure we all agree on is that the lives of children and adults may only improve if society has a better understanding of the condition that, as we have heard, affects one in 100 children. Recent figures from the NHS Information Centre have confirmed a similar incidence in adults.