Backbench Business - Services for People with Autismbackbench Business

Part of the debate – in the House of Commons at 2:22 pm on 21st March 2019.

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Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health) 2:22 pm, 21st March 2019

It is a pleasure to follow John Howell, whose contributions are always well worth listening to. I thank the Backbench Business Committee for the opportunity to have this debate, of which I was happy to be one of the co-sponsors. I also thank Huw Merriman for setting the scene on behalf of Dame Cheryl Gillan, who would have been here had she not been detained elsewhere.

The National Autistic Society definition of autism sets the scene:

“Autism is a lifelong disability which affects how people communicate and interact with the world. There are approximately 700,000 autistic adults and children in the UK.”

Without the right support or understanding, autistic people can miss out on an education, struggle to find work and become extremely isolated. As an active constituency Member of Parliament, every week in my office I deal with and try to help people who have autism and their families, including on benefits, educational assessments and family issues and pressures.

The National Autistic Society’s “Too Much Information” campaign highlighted how, in spite of increasing awareness around autism, there is still a significant lack of public understanding, and there genuinely is. Research shows that although 99.5% of people in the UK have heard of autism, only 16% of autistic people and their families think that the public really understand them. Half the autistic people and their families said that they sometimes do not go out because they are worried about the public’s reaction to their autism.

All that is certainly true, but I was also sent a link to a few blogs by a parent in Strangford, who said:

“I don’t have the words to explain it but this is how I feel:”

It read:

“I am not a warrior mom. I am not a superdad.

I am tired.

I just want what everyone else has—time to enjoy my kids, without the constant, mind-numbing terror of worrying about their future.

I don’t WANT to be an activist. No-one does.

Nobody woke up one day and said ‘Hey, I want to take time and energy away from my family to fight for someone’s rights.’

Plus, I want to feel the positive effects NOW! I ain’t doing this just for other people, honestly, I am doing it so that I too can benefit from the changes.

So instead of patting me on the head, shaking my hand, congratulating me on how selfless I am, blah di blah blah blah…help a brother out…give a sister a break.

Do SOMETHING DEFINITE to help change things, NOW and for the next generation. Ask me, I have ideas.

Otherwise, miss me with the…platitudes, please.”

That is a heartfelt request from one of my constituents. I want to help this father who contacted me and who feels like that, and all the parents like him. We have a duty not to offer platitudes about rainbows and sunshine or individually unique snowflakes, all of which are lovely and touch the heart emotionally. We have a duty to provide physical support and practical advice. We have a duty to provide respite for parents who are on the brink of a breakdown, and for siblings who feel invisible as they strive not to add to their mum and dad’s concerns because they are dealing with enough. We have a duty to provide respite to the child and to introduce them to people outside their circle in a controlled and helpful way. I do not believe that we are fulfilling our duty.

In Northern Ireland, we are certainly not fulfilling our duty in the way that I would like us to. A number of families with children with challenging behavioural problems—children who have met the criteria to be considered for overnight care, which is so important—have been told that they will have to wait several years before they can access overnight respite care. According to the Northern Ireland Health and Social Care Board statistics for 2014-15, there were 4,031 children in need, known to social services and with a disability, and 1,210 children with a disability who had received respite care. There are 10 respite facilities across Northern Ireland, each of which has between five and eight beds that can be used to care for children overnight, but more than 1,200 children are trying to access those beds.

In my previous job in the Northern Ireland Assembly, I was pleased to be a member of the all-party group on autism. We fought a campaign over a period of time. The Autism Act (Northern Ireland) came into law in 2011, after I had left the Assembly, but I would have had some input into the process through the all-party group.

In the limited time I have left to speak, let me outline what the autism strategy has done in Northern Ireland. The autism strategy for Northern Ireland runs from 2013 to 2020, and the action plan ran from 2013 to 2016. We focused on the following issues: awareness; accessibility; children, young people and family; health and wellbeing; education; transitions; employability; independence, choice and control; access to justice; being part of the community; and participation and active citizenship. We published a progress report on the autism strategy for 2013 to 2020 and the action plan for 2013 to 2016. It is a pity that we do not have a functioning Northern Ireland Assembly, because these issues would fall under the remit of that Assembly, rather than here. The Assembly still has that responsibility, even though it is not functioning in the way it should be.

It would seem that we have got to the breaking point, which concerns me greatly. It would seem better to have in place a preventative scheme for the families of those who struggle and live the daily autism battle, so that they do not have to reach the breaking point. I am particularly pleased to see the Minister in her place; we will have a positive response from her, as we always do, and I look forward to that response. The overwhelming feeling that I get is that parents are weary—weary from lack of sleep; from fighting the same battles with the child every day; from dealing with people’s expectations of how their child should behave; from fighting to get recognition for their child and to have adequate support in place to reach their potential; and from knowing that their other children are not getting the attention they need. They are just weary, and they need more help, right now.