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Backbench Business - World Autism Awareness Weekbackbench Business: 28 Apr 2016: House of Commons debates - TheyWorkForYou


Question put and agreed to      The MP's  name comes first then a part of their speech

I beg to move,       CHERYL Gillan
That this House 
notes that World Autism Awareness Week was held from 2 to 8 April; 
believes that there is a lack of understanding of the needs of autistic people and their families; 
and calls on the Government to improve diagnosis waiting time and support a public awareness campaign so that people can make the changes that will help the UK become autism-friendly.
Kevin Brennan    I pay tribute to the right hon. Lady for the work that she does. I also thank the Minister, who met some constituents of mine this week; they do not wish to be named in public. The right hon. Lady raised the question of awareness. Does she agree that it is important to have such awareness in our criminal justice system? Adults with autism, in particular, sometimes come into contact with the criminal justice system, and there is an inappropriate level of understanding of issues that may have led to that happening.
Cheryl gillan  CG 
The National Autistic Society survey that I mentioned found that 79% of autistic people feel socially isolated; half of autistic people and families sometimes do not go out because they are worried about how the public will react to them; and 28% of autistic people have been asked to leave a public space because of behaviour associated with their autism.              “Too Much Information”, during this year’s World Autism Awareness Week. I was glad to support the launch of that campaign in Parliament. The cornerstone of the campaign is a short film, shot from the point of view of a child with autism, which tries to give the viewer some sense of what it is like to live in the overwhelming world that someone with autism lives in every day. Many parliamentary colleagues joined me for the event, and I am glad to report—this is almost unbelievable, but it is a very good sign—that, to date, the video has been viewed online more than 50 million times. That film marks only the start of the campaign, however, and there is clearly much more that must be done to help tackle social isolation among the nearly 80% of people on the spectrum who say that they feel isolated.
Robin Walker such as Aspie in my constituency, that help people with Asperger’s and people on the spectrum to socialise play a really important role in helping to build their confidence and ensure they have the support they need to go into what can often be a very threatening world?
700,000 people in the UK who are on the autism spectrum
Julie Cooper 15% of adults suffering with autism are in full-time employment 
CG Asda manchester is piloting a “quiet hour”
CG which is the time it takes to get a diagnosis in the first place. I can see from the nods that that rings a bell with everyone in the Chamber. Recent research suggests that, on average, adults have to wait more than two years for a diagnosis. For children, the figure stands at 3.6 years. An autism diagnosis can be life-changing, explain years of feeling different and help to unlock professional advice and support. Government guidelines say that a diagnosis should not be a barrier to putting in place the right support, but 58% of people on the spectrum have told the NAS that a diagnosis led directly to getting new or more support. How can the right support be identified without the clarity of a diagnosis?
Norman Lamb in-depth report in The Economist a couple of weeks ago. It reported that a Swedish study has found that the cost of lifelong care for someone with autism could be cut by two thirds with early diagnosis and treatment. Again, the moral case and the economic case for this are overwhelming.

autism hospital passport,
CG one specialist support scheme found that 70% of adults found work when supported by autism professionals. 
Survey after survey of people on the spectrum tells us that better understanding of the condition among both the public and professionals would be the one thing that would help them to feel more secure and allow them to have fulfilling lives. People on the spectrum are reasonable, and do not expect an ordinary member of the public with no knowledge of the condition to be aware of technical details about the diagnostic criteria for autism. However, they feel that just a little more understanding, compassion and awareness would make all the difference to their lives. If we see a child having a meltdown in a supermarket or an adult acting a bit differently on a train, we should stop and think for a moment. They may be autistic, and need our kindness, not our judgment.
Guardian columnist John Harris wrote an excellent summation of some of the issues around autism. He ended his piece with these words:
“Our culture still too often couches autism in terms of pity or fear as an essentially Victorian sensibility lingers on. But we are moving towards a new world in which autistic people and their families advocate for themselves. For them, the current noise about autism perhaps highlights an inevitable phase of any struggle against ignorance: the point at which you know you’ve come a long way but still have light years to go.”
John Cruddas it tallies with the needs of autistic people and their families.
I refer to an article in Autism, “What should autism research focus upon?”, which suggested that
“research activity should be broadened to reflect the priorities of the UK autism community, focusing in particular on research that helps people live with autism.”
It would appear obvious that research should maximise its impact on the life experiences of those affected—our constituents—so why might this apparently self-evident objective not be the case?
constituents—so why might this apparently self-evident objective not be the case?
When we look at the debate about autism research, there appears to be a tension between two types of project. On the one hand, there are projects that focus on what we might call the basic science of autism—on neural and cognitive systems, genetics and other risk factors. On the other hand, there is research focused on the understanding and promotion of how families function and the services those families need. Evidence suggests that that tension has been identified in the US and that as a result there is a growing diversity in research funding, to the direct benefit of autistic citizens and their families.
In contrast, evidence from the Centre for Research in Autism and Education suggests that that diversification of funding has not occurred in the UK, and that projects in the areas of biology, the brain and cognition outstrip all other areas of autism research by a vast margin, in terms of both the numbers of projects and the total research grant. The effect is that very little research funding is directed into identifying effective services for autistic people and their families—that is, research on services, treatments, intervention and education. 
Research by the Centre for Research in Autism and Education suggested that the families of autistic people value research into the underlying causes of autism, but need a more balanced distribution that redirects attention on to their daily lives, their needs and the services afforded to them.
Hannah Bardell shadow SNP Westminster Group Leader (write to offer support to her assisstant) 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 here 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.
Brendan Ohara SNP defence.
As we have heard, autism is a spectrum condition, meaning that no two autistic people display the same characteristics. Some people with autism live relatively independent lives, while others, at the other end of the spectrum, might need a lifetime of specialist care and support. That demands that every single person living with autism be treated as an individual and that society affords each individual the respect and dignity they deserve. I have no doubt that we, as a society, aim to do that, but the question is: do we actually do it?
Jo churchill Would the hon. Gentleman agree that that reaction to people in our society with autism and their families leads to a fear of going out, as my constituent Maureen said, which, particularly for autistic children transitioning into adulthood, can in turn lead to social isolation for them and often their primary carer, which is not adequately recognised across the piece? 
Brendan ohara snp The hon. Lady is absolutely correct, and it is something I will touch on in a moment.
Nearly 70% of people living with autism believe that the public see them as antisocial and almost one third have been asked to leave a public place for displaying behaviour associated with their condition. As a result, as the hon. Lady just alluded to, four in every five people living with autism in the UK feel isolated from society and half do not go out for fear of how people will react to their condition. As I said, those statistics make for pretty depressing reading and should force us all to look at our behaviour and question what we are doing, as a community, to our fellow citizens that makes them prefer social isolation to the way they are treated by the public, ourselves included.
We have to get the key messages out to the public, and those key messages are: people with autism might need extra time to process information and respond to people; people with autism can become anxious in social situations; people with autism can become anxious when faced with unexpected changes or unscheduled events; people with autism can often be hyper-sensitive to noise, light, smell or colour; and, you know what, when things get too much, people with autism can have a meltdown. Deal with it!
To conclude, I will quote from the Scottish Government’s autism strategy. Their vision is
“that individuals on the autism spectrum are respected, accepted and valued by their communities and have confidence in services to treat them fairly so that they are able to have meaningful and satisfying lives.”
That is something around which the entire House can unite.
Matthew Pennycook  Awareness alone has not keep people with autism from being abused, has not helped them find jobs and has not supported them to live independently. In short, we will not overcome ignorance and help those with autism— young and old—to live independent and fulfilling lives simply by increasing awareness alone. what is really required is acceptance of autism.
David Jones con.A study by the London School of Economics in 2014 estimated that the cost of autism to the British economy was approximately £32.1 billion a year. Let me put that into perspective: the economic cost of cancer is estimated to be about £12 billion a year, while the figures for heart disease and strokes are £8 billion and £5 billion respectively.
The United Kingdom currently spends just £4 million a year on autism research, compared to £590 million on cancer, £169 million on heart disease, and £32 million on strokes. World Autism Awareness Week gives us an opportunity to reflect on what is clearly a far more widespread condition than was previously thought, and to do more in our power to address it.
Natalie McGarry For instance, they may start to shout, cry or laugh hysterically for no apparent reason. When stressed, they may exhibit disruptive or even aggressive behaviour, breaking things, hitting others or harming themselves. ( what can the public do? Does the child/ adult want to be there)
John Howell 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.
Norman Lamb there is much that people with autism can do in the employment sphere. They can be fantastic employees, contributing a great deal and leading fulfilling lives, but we often fail them. Also, it costs the Government and the economy a great deal when people with autism end up depending on the state because we have failed to provide them with the necessary support early on. That is the big challenge. The article in The Economist made clear the strong economic case that if we invest in diagnosis and early intervention, we will save a fortune in lifetime care. As we learn, the Government have to respond. That is the challenge. This Government, because they are here now and because new learning can lead to improvements, have a responsibility to respond.
at the age of nine—on the “Today” programme, and it was a remarkable interview. He movingly wrote in his letter:
“I normally say to myself you have to keep on going. I normally also say ‘is it worth it’. I could just kill myself. I wouldn’t have to face today.”
Robin walker It is a fantastic organisation that has played a part in not only helping to reduce the risk of social isolation, but inspiring people to come together and believe in themselves and in their capacity to work and to create businesses for people on the spectrum.
Anne-Marie Trevelyan the north-east, a business called Autism Works is taking on mathematical PhD autistic young menShe movingly described how repeatedly being requested to prove that he is autistic and to fill out form after form makes her son’s behaviour “go through the roof”. She says:
“My son’s autism is very complex and I have to speak to him in a certain way, explaining the meaning of words. This is very important because it can lead to violence if you use the wrong words.”
That is violence against her. She says that the tone of her voice and her body language are of “utmost importance”. She says:
“Please, stop and think, not everyone can be the same. We need understanding as well as policies that help
. There needs to be a greater awareness of the consequences of not providing the right support at the right time.
Many parents with an autistic child will undoubtedly relate to those concerns, and we must recognise their commitment in continuing to campaign tirelessly for greater support to be made available.
Ronnie Cowan One such organisation offering that support is Reach for Autism, which was established in Inverclyde by Vicki McCarthy. Reach for Autism offers a wide range of support, from teacher training to mentoring programmes. It currently supports more than 60 autistic people, including 44 children, eight young adults, four volunteers and a member of staff. It is difficult to overstate the importance of those services, not only for autistic people, but for their families. Lifeline services such as those established by Vicki can transform people’s lives.
If we invest in people with autism from a young age, we can decrease the chances of autistic people suffering from mental health problems as a result of social isolation or low self-esteem. That investment ensures that people with autism feel valued and respected, are prepared for employment and can live more independent lives.
Yet establishing and maintaining that support has been difficult. Reach for Autism has no core funding, and running costs are met entirely through donations and its own fund raising. The organisation and its vital services simply would not exist without the energetic support of volunteers and the determined efforts of Vicki. Whether it is individuals and their families or organisations themselves, those touched by autism are faced with the same obstacles: a lack of funding; a lack of certainty over future support; and a lack of public understanding of the condition.
I hope that other Members will join me in declaring that people with autism, their families and the organisations that support them deserve better than this never-ending uphill struggle. All people, including those with autism, deserve the chance to realise their full potential, and by increasing awareness we can take important steps towards becoming a more autism-friendly society. I know that I am better for my increased knowledge and would like to thank Vicki and all those who have raised my awareness and understanding.
Melanie Onn Grimsby autism forum, which was held at Open Door. It is a fantastic group that helps to give people with autism and their families a voice in the many different systems that they find themselves thrust into.
Phillipa Whitford The debate has covered a lot of the structural and supportive things that need to be done, but does it not also throw down the gauntlet to us about the need to change our view? We think of people with autism as finding difficulty in seeing the world as we see it. We actually need to see the world as they see it.
Alaister Burt I also wish to highlight the work the Department of Health has taken forward with the Autism Alliance UK, a large network of autism charities, on the “Connect to Autism” project, which encourages local organisations, services and companies to become autism champions by training staff in autism awareness—there is a lot more to do. 
I commend to the House the “Progress Report on Think Autism: the updated strategy for adults with autism in England” which was published in January. I put that together along with the Under-Secretary of State for Disabled People, my hon. Friend Justin Tomlinson, the Minister for Children and Families, my hon. Friend Edward Timpson and the Under-Secretary of State for Justice, my hon. Friend Andrew Selous, who deals with prisons, probation, rehabilitation and sentencing. It sets out progress against 33 of the “Think Autism” actions and describes some of the work going on across government, because it absolutely involves education, employment and all sorts of other things. The report details case studies and it demonstrates what is being done in different places around the country.
Cheryl Gillan “Thank you so much, but please don’t let it just be kids, kids, kids. Don’t forget the older adults.”
Question put and agreed to.
That this House 
notes that World Autism Awareness Week was held from 2 to 8 April; 
believes that there is a lack of understanding of the needs of autistic people and their families; 
and calls on the Government to improve diagnosis waiting time and support a public awareness campaign so that people can make the changes that will help the UK become autism-friendly.



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