Adult Autism Strategy

Jim Shannon Excerpts

Wednesday 5th March 2014 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I am pleased to make a contribution to the debate, and I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on bringing this matter to the House for consideration. Autism is an issue that I have helped constituents with on many occasions, as an elected representative. I am mostly aware of it, probably, in respect of how we can help those with autism through the benefits system. That is perhaps people’s first introduction to the issue. The right hon. Lady clearly laid out the issues pertinent to those with autism, and also mentioned the pressure that families are under. I want to dwell on that.

Diagnosis of autism has been increasing. I have been involved in the support of autism services for many years in Northern Ireland, through my constituency work and, formerly, in my role as a Member of the Northern Ireland Assembly and as a local councillor. I am sure that all hon. and right hon. Members in this Chamber can think of examples of when they have fought to have a child statemented, so that they could receive the help that they and their family needed for schooling, and so that support could be given to the family. Although this debate is about adult autism, autism affects people from the very beginning. I shall try to speak about that as well.

I recently spoke to a young mother of three who, with her husband, was beginning to attend parenting classes to help them better deal with their daughter. It was not that they were not willing to deal with her, but they needed help dealing with the behaviour issues of those with autism. We are talking about lovely children—and lovely adults—but they need help. The couple have two other lovely children, a great family support network and a close group of friends who help out, yet they recognised at an early stage that they needed more help and needed to be better equipped to deal with this. They said that they needed help understanding autism, so that they could understand and interact better with their child.

[Mr Gregory Campbell (East Londonderry) (DUP)]

Does my hon. Friend agree that even in 2014, after a number of years in which awareness of autism has increased significantly—it has done so particularly in the past 15 or 20 years—there is still a need for many statutory agencies to act and react much more sympathetically and proactively, particularly in dealing with parents who have autism and have difficulties with parenting skills?

[Jim Shannon]

I thank my hon. Friend and colleague for clearly setting out the issue for the bodies responsible for helping parents. The parents I mentioned came to me about parenting skills, and they got the help, by the way, which was good. They told me what a blessing these classes were. That is why I am happy to stand with my colleagues today and highlight the needs of sufferers of autism and their families.

I am familiar with the care of one autistic young man. Many hon. and right hon. Members here have personal knowledge of such situations, and I hope that some of them will have a chance to contribute to this debate. That young man’s parents do everything for him: they dress him, cook for and feed him, clean, bathe and toilet him, amuse him, and hug, kiss and love him. He depends on his parents entirely for his every need. When he is at his day classes, they do the washing, ironing, cleaning, and shopping and try to find time to work to pay the bills at the same time.

The pressure on the parents and on the family unit is greater because of the problems and behavioural issues related to the autism of their child. They love their son—that is never in dispute—but love is not enough to get the family through the sheer exhaustion and the emotional and mental strain. Sometimes help is needed on matters outside of parental skills—through social services, for example, giving a bit of respite. Difficulties in the benefits system are practical issues for parents and those with adult autism; they relate to how parents can help their child through the school years and into the early years of adult life. It is up to the community and us as elected representatives to step up to the plate and help that boy and his parents. We can do that by supporting them and offering them the best that our society can do to ensure that they do not reach the point of no return.

We can all relate to the story of Susan Boyle, who has Asperger’s syndrome, which is also autism. She found out that she had it later in life. After she was diagnosed, she said that she almost felt relieved to know, after all those years, what was wrong and why she was different. That is a practical example of how someone the nation knows has been affected. She said what she said because she felt it was important that other people knew that autism cannot and will not hold people back, but they need help to get along. That is the thrust of this debate.

[Kate Green]

Does the hon. Gentleman agree that we need to raise awareness across society of the circumstances of adults with autism? For example, a young man in my constituency, looked after by his parents in the way that the hon. Gentleman describes, got severely into debt because he did not understand what financial services companies were saying when they were pushing credit cards and loans on him. Does he agree that educating the business community, neighbours and community groups, and everyone in society, about how adults with autism respond and cope would protect people and prevent those things from happening?

[Jim Shannon]

I thank the hon. Lady for her valuable contribution. Yes, I agree; I think all hon. and right hon. Members would. Churches have intervened to help in a number of complex cases in my constituency. What is not complex for us is complex for people with autism. There is a clear role to be played in that regard. Only 15% of adults with autism are in full-time employment; again, that results from some of the issues that they suffer from, including epilepsy, sleep disturbance and mental health problems. Many out there are trying to help and assist.

I ought to give a Northern Ireland perspective, because we have done good, helpful work there, health being a devolved matter. The Minister is aware of that good work because he has visited a number of times. Perhaps he might comment on that in his response.

The Northern Ireland Assembly put in place the Autism Act (Northern Ireland) 2011, which is the most comprehensive autism and single disability legislation in the whole of Europe. The need to do something was recognised at an early stage, as was the fact that the power was there to do it within the devolved Administration, and that was done. It is the first legislation in Northern Ireland requiring by law all Departments to plan and work together on the delivery of the strategy. The cross-governmental attitude that the right hon. Member for Chesham and Amersham requested is there. My hon. Friend the Member for East Londonderry (Mr Campbell) and the hon. Member for Stretford and Urmston (Kate Green), who both intervened on me, have confirmed that that should happen. Departments worked together on the delivery of a strategy. No cross-Department barriers are allowed at all. When we say “comprehensive”, we mean it. I am delighted that the debate is calling for such a strategy.

Autism Northern Ireland was at the centre of the campaign for the Autism Act (Northern Ireland) with its grass-roots campaign. There was no money or external lobby company—just hard work, and determination to make it happen and to gain support from all parties, which was forthcoming. It had autism ambassadors—health and education party spokespersons—to build up expertise on issues of concern. It also formed a partnership with Autism Cymru, which was already working with the Welsh Government on implementing a Wales autism strategy. That was the foundation of the Celtic Nations Autism Partnership—Celtic as in “keltic”, and certainly not “seltic”. No offence to any Celtic supporters who might be here, of course. That is a partnership with the autism societies of Scotland and the Republic of Ireland, which has led to initiatives in the USA. The CNAP and Members of the Legislative Assembly visited the US Congress and the European Parliament.

When we say that the approach is comprehensive, we are talking about looking across Europe and the world; examples were considered and discussions took place. That led to the Autism Act (Northern Ireland). A partnership was initiated with Autism-Europe and MEPs to develop a comprehensive and well-thought-out European autism strategy.

In 2012, I highlighted the difference between the Autism Act (Northern Ireland) and the English Autism Act 2009: the Northern Ireland Act is equality-driven and lifelong-focused. Perhaps the Minister will indicate whether the Government are trying to achieve in England the equality and lifelong focus that we have in Northern Ireland through the Autism Act (Northern Ireland) 2011. That Act amends our disability discrimination legislation, too, to include those with social communication disabilities such as autism. That supersedes the Great Britain Equality Acts, which only give recognition and guidance in primary legislation. That is significantly different from how we did it back home, where we have attempted to address adult autism.

I again thank the right hon. Member for Chesham and Amersham for securing the debate. She, like me and everyone else in the Chamber, sees the gaps in the strategy and the need to enhance provision by including an adult strategy. I have raised today the cases of a young girl and a young adult male. The strain on families grows greater with time as the child becomes an adult and more difficult to handle. The legislation should be amended to provide more state help.

[Andrew Selous (South West Bedfordshire) (Con)]

I apologise for not being here earlier, but I was unable to get out of a meeting. One of my constituents contacted me to say that now that her daughter is 20, none of the professionals dealing with her daughter will speak to the mother. Does the hon. Gentleman think that we should make changes, so that with the young person’s permission, if they are over 18 and want their parents involved, all the different organisations work with the parents, who are there for their autistic children as they get older?

[Jim Shannon]

I agree entirely with that most helpful intervention. In my experience as an elected representative, that is exactly what people want. We should help whenever we can. The Minister for Health, Social Services and Public Safety in Northern Ireland has been anxious to collaborate with the Department of Health on what is working well in Northern Ireland. I have great respect for the Minister of State, Department of Health, but perhaps things could work better. There are examples of good work on the mainland. I looked through the background notes this morning before the debate, and one thing that caught my eye is that there is a specialist autism unit at South Devon college called the LODGE—Learning Opportunity for Development and Guided Education—which has been shortlisted at a national award ceremony in recognition of the education it provides to young adults with autism. There are many good examples of how Departments can do better for young adults with autism, and we should be trying to make that happen.

I am keen to assist and work with the right hon. Member for Chesham and Amersham to ensure that adequate legislation is introduced to make changes that will greatly affect the lives of those with autism and their carers. Never forget the carers, who also need support. They love their children, but they need help, because things are not simple. They want their child to have the best future possible, which does not include an institution. How will we deal with ageing parents? I know that I am not the only one who is aware of ageing parents. What will happen to these children and young adults when their parents pass away? They may no longer be able to look after their children and young adults alone. The answer is clear: they need support, and we must put it in place. Hopefully today is a first step towards providing that support to families across the United Kingdom of Great Britain and Northern Ireland. I support the right hon. Lady and her proposal.