Push for Action spokesperson Jonny Dean on getting a late diagnosis

Push for Action champion Jonny Dean, famous for being the front man in  Brit-Pop Group Mensw@ar, has a fantastic article up on the Guardian's 'Comment is Free' blog today to mark World Autism Awareness Day.

Jonny said:

"It took well over a year to get diagnosed, partly because only one place in the southeast had the facilities to do it. But I am glad I persevered. It means that my GP is aware of my condition. It meant I was able to get cognitive behavioural therapy to cope with the challenges I face every day. It has enabled me to understand who I am. But more than anything, diagnosis was a massive relief."

He also talked about the Push for Action campaign and his hopes for 'Think Autism', the new Government strategy:

"Last year the National Autistic Society started a campaign, Push for Action, to improve support for adults with autism. In October, I joined other campaigners in delivering a petition to 10 Downing Street demanding more action from the government, including money for new services, better training for staff such as GPs and care assessors, and more to be done to raise public awareness of autism.

Things are slowly getting better, especially with regard to awareness, but solid support is still lacking. I hope that the government's revised autism strategy, which will be published today – World Autism Awareness Day – will tackle this and actually improve the lives of adults with autistic conditions as well as those of their families."

Read the full article here.

Government announces new autism strategy, 'Think Autism'

To coincide with World Autism Awareness Day (2 April) the Government have met a number of key Push for Action recommendations – including for the first time ring-fenced money – in their publication of the revised adult autism strategy for England.

As part of the new initiative, coined ‘Think Autism’, the Government will put £4.5 million of revenue and capital funding towards an Innovation Fund and a community led awareness programme.

The innovation fund will support the development and replication of new services. The Awareness programme will help build understanding among the professionals working with people with autism and among the general public, and to make communities more autism-friendly. The Government will publish more details on how councils, charities and local groups can apply for the funding by the end of June 2014.

Push for Action has been calling on the Government to unlock the barriers councils and the NHS face in implementing the Autism strategy since it’s publication in 2010. In addition to the funding, we’ve also secured significant breakthroughs in key areas such as training, guidance, data collection and monitoring.

Mark Lever NAS Chief Executive, said:

It’s very positive that Think Autism is tackling core issues that affect the quality of the lives of adults with autism: understanding and awareness, and the development and delivery of better services. I would like to thank the thousands of NAS campaigners who worked through our Push for Action campaign to make this change happen.

While welcoming the new adult autism strategy, The National Autistic Society knows that this will only make a difference to people with autism and their families if local authorities and health services establish the best possible plans for local services, and if we in the autism community and the general public help create communities where adults with autism feel understood”.

The next crucial step is to ensure that councils and the NHS move forward in implementing the revised strategy. By the end of April we will have new campaign resources as we carry on in our battle to end the wait for everyday support.

To receive updates on the campaign, sign up to Push for Action now. 

The revised strategy will be published by the Government in full at 2pm today. We will update this page with a link to the strategy. 

MPs debate Push for Action demands

MPs this week held a debate in Westminster on the forthcoming revised adult autism strategy, in one of the Push for Action campaign’s last opportunities to influence its content ahead of publication on World Autism Awareness Day on the 2 April.

The debate was tabled by Cheryl Gillan, the MP who brought forward the Bill that became the Autism Act in 2009. Mrs Gillan used the opportunity to highlight areas of success since the Act was passed but emphasised that support for adults with autism is still patchy across England and much more needs to be done to address this.

Chair of the All-Party Parliamentary Group on Autism, Robert Buckland MP, spoke about the need for better awareness of autism in communities, and emphasised that local businesses, leisure companies and public service providers had a duty to ensure that that people with autism are not isolated, but treated as full and active members of their local communities. Nine other MPs also spoke up in the debate, some directly quoting from emails NAS supporters had sent them as part of the Push for Action campaign.

Push for Action has put forward a variety of proposals to strengthen the revised strategy that were raised in the debate; these included:

• the introduction of an innovation fund, to support the development of new local services
• an autism awareness programme, to help local groups and volunteers build a community that is more welcoming for people with autism
• improvements in training across all public services, but particularly for GPs, community care assessors, and front line staff in the welfare and criminal justice systems
• a more transparent way for progress of the strategy to be mapped, and for local people to hold their council to account

Responding on behalf of the Government, Care and Support Minister Norman Lamb paid tribute to the NAS for its 'inspired leadership' in ensuring that the strategy translates into greater difference for people's lives. He said that the Department of Health are considering the range of proposals set out by The NAS, and agreed to meet with the MPs and the NAS to discuss these and the strategy in more detail. 

A transcript of the debate can be found here:http://www.parliament.uk/business/publications/hansard/commons/todays-commons-debates/read/unknown/176/ and it can also be viewed on Parliament TV here http://www.parliamentlive.tv/Main/Player.aspx?meetingId=14926

Cheryl Gillan MP speaks up for Push for Action

Push for Action champion, Cheryl Gillan MP, has published two articles recently championing the campaign.

The articles appear on the Conservative Home website as well as Politics Home, two sites frequented by MPs and parliamentarians. They therefore represent a really useful ways to bring our issues to the politicians who need to understand them.

To read the articles, follow this link for the Conservative Home article and this one for Politics Home.

Parliamentary debate secured for Wednesday

Cheryl Gillan MP, whose private members bill led to the Autism Act being passed in 2009, has secured a debate about the autism strategy review in the House of Commons this Wednesday.

The 1.5 hour debate, which Care Minister Norman Lamb will respond to, acts as the Push for Action campaign's last major opportunity to influence the content of the revised strategy before its publication.

We need plenty of MPs to come and speak up in the debate so that the Minister is clear about what an important issue this is for the electorate.

You can do your bit by asking your MP to speak in the debate on your behalf. Follow this link and submit our simple form to do so.

To watch the debate, which will take place on Wednesday morning at 9.30, follow this link.

Nottinghamshire Asperger's Team: SAVED!

Nottinghamshire County Council has today announced that they are dropping their proposal to scrap their pioneering Adults with Asperger’s Team. The proposal, made as part of their Budget Challenge 2014/15, has been reversed in response to concerns raised by people with autism and their families.

As part of the Push for Action campaign, The National Autistic Society has been working to support local people and organisations such as Autistic Nottingham to campaign against the closure. The team provides social care support, care planning and person budgets to around 200 people with Asperger syndrome and was the first specialist social care team in the UK. Set up in recognition of the fact that people with Asperger syndrome were falling between learning disability and mental health services, the team is regarded as an example of best practice and is frequently held up as so by both the our charity and the Government.

Tom Purser, our Senior Policy & Participation Officer said:

"Today’s announcement will come as a tremendous relief to the many people who contacted the NAS to express their concern about the  proposal. We have worked to support local people and groups such as Autistic Nottingham to speak up and have their views heard by the Council, and we’re delighted that they have been listened to.

"Nearly 5,000 adults in Nottinghamshire are thought to be living with autism, and it’s crucial that appropriate support is available to those who need it.”

Autistic Nottingham is a user-led support group and has worked with the NAS to marshal the support of their members and the autism community more widely to oppose the cut and have their voices heard. We are delighted that the Council has listened and that people with Asperger syndrome can continue to be supported by team with specialist knowledge that understands their needs.

Matthew McVeagh from Autistic Nottingham said:

"Autistic Nottingham is very glad and relieved to hear the news that the county council will not after all be closing its dedicated Adults with Asperger's service. This is a great result for people with Asperger syndrome in Nottinghamshire and by extension elsewhere, as it is essential that people with autistic conditions receive appropriate care and help everywhere in the country. 

"In general services for autistic people are growing so it would have been a backwards step if the Nottinghamshire County team, nationally considered a flagship scheme and example of best practice, had been ended. We now look forward to continuing to work with the Team to improve the lives of adults with Asperger's in Nottinghamshire."

Our underground message to MPs

If you’re passing through Westminster tube station, look out for our timely message to MPs…

We know a lot of MPs arrive to work at Westminster tube every day, so we thought we'd catch them on their commute with this eye-catching poster right in the heart of the station. Our poster reminds them that this is a critical moment in the Push For Action campaign - and they need to take action.

The Government will be publishing the new adult autism strategy on World Autism Awareness Day, 2nd April 2014, so we need as many MPs as possible to be speaking up about autism in parliament and asking questions of the Health Minister, Norman Lamb, over the coming weeks.

You can do your bit by asking your MP to speak up for you by taking this simple online action: https://e-activist.com/ea-action/action?ea.client.id=10&ea.campaign.id=24705&ea.tracking.id=9ebfc811

A new autism agenda in Herefordshire

One of the exciting but sometimes frustrating elements of local campaigning is that you are never entirely sure how far things will get when you start pushing.  When I started looking at the picture in Herefordshire it did not seem hopeful.  There was no Autism Partnership Board, an unclear picture over who the Autism Lead was and hardly any action since the Autism Strategy was published in 2010.

Nine months down the line we are looking at a very different picture.  In a week’s time the first meeting of the Autism Partnership Board will be held in Herefordshire to develop and deliver an implementation plan.  There is a local strategy signed off by the Council and a clear Autism Lead who is pushing things through on a priority basis.  A senior County Councillor has taken on the role of advocating for autism to ensure the issue is given the support it needs at the higher levels of the Council.  A short survey of adults with autism and their parents/carers has underlined the urgency of the need for change.

What has been most effective in moving things along in this way has been connections.  When I first started to engage with the county there was very little in the way of a local autism network.  I was lucky enough to come into contact with Herefordshire Disability United, an excellent pan-disability organisation, who decided to devote some time and money to autism.  An event was held bringing together people with autism, parents, providers and other professionals to try and map what support was available and report from the day, with a set of recommendations, will now go towards guiding the work of the Partnership Board.  The NAS has also now opened a branch operating across Herefordshire and Worcestershire and I have made contact with a user-led group called Aspie Link who are now seeking to get involved. 

These connections and networks are essential to successfully push forward progress at a local level, especially rural counties like Herefordshire.  For anyone who wants to Push for Action where they live and start seeing the Autism Strategy make a difference, build a network, find out who else is active in your area and speak to us about how we can help you make an impact.

Tom Purser

The NAS' Campaigns Team

Tom's campaign blog #7: What do toothbrushes, knives and forks, alarm clocks and chocolate coins say about autism?

Why would we want hundreds of toothbrushes and knives and forks, a few dozen alarm clocks, and an enormous pile of chocolate coins? And why on earth would we be sending these things to the Care Minister, Norman Lamb?

The Push for Action campaign has been building the pressure on the Government to do more to get the right support to adults with autism. With their announcement on their autism strategy review fast approaching, we didn’t want Mr Lamb to forget why we’ve been pushing so hard and so persistently

At its heart, the campaign is all about the basic support that the Autism Act legislates for – helping people with autism to wash and dress, prepare a meal, find work or manage their finances.

We wanted to keep it simple and remind Norman of the people who are behind the statistics, the legislation, and the campaign – the people who are still waiting for support. A stunt was in order, something to take this straightforward message directly to the Department of Health.

We gathered everyday objects to represent the support people with autism have told us they need. Although 53% of adults with autism said they want help to find work, only 10% are getting the support. So this Monday, we assembled 50 alarm clocks – something most working people need – packaged them up in a box and hand-delivered them to the Department of Health offices, 'FAO Norman Lamb'.

Throughout the week, we sent Norman three more packages based on the key support issues – toothbrushes to represent washing and dressing, knives and forks for preparing a meal and chocolate coins for managing money.

To take this message wider, we photographed it and shared our graphics on Facebook and Twitter. We also, for the first time, took to Vine, to truly animate this message and bring our boxes to life (take a look!).

Thanks to all of you who have shared, liked, commented, retweeted, revined, and showed your support for the boxes.

We’ve delivered these things to Norman – it’s time for him to deliver for people with autism.

To keep the pressure up and show Norman that you care, please click here to get your MP to do the same

Tom Madders,

Head of Campaigns

We welcome the publication of NICE Quality Standard on autism

The National Institute for Health and Care Excellence (NICE) has today published its Quality Standard on autism setting out what good services for children and adults with autism should look like. 

Local councils and the NHS will now need to look at whether services are meeting relevant areas of this standard. This should mean the specific needs of people with autism are taken in to account in the design of services. The standard can also be used by people with autism and their parents/carers as information about what high-quality care or services should include. 

The need for a Quality Standard was a key recommendation of our You Need to Know campaign for improving child and adolescent mental health services (CAMHS) for children with autism.

The Quality Standard sets eight measures to assess the quality care for people with autism, which include:

• diagnosis should happen within three months of referral to an autism team
• whilst being diagnosed, people must be assessed for comorbid mental or physical health issues
• those with a diagnosis should have a personalised plan, developed between the individual, parents/carers and the local autism team
• everyone with autism should have a key worker to support delivery of the personalised plan
• People with autism should not be prescribed medication to address core features of autism
• those who develop behaviour that challenges should be assessed for possible triggers, including physical health conditions, mental health problems and environmental factors
• people with autism and behaviour that challenges should not be offered antipsychotic medication for the behaviour unless it is being considered because other interventions are insufficient or cannot be delivered because of the severity of the behaviour.

Mark Lever, Chief Executive of The National Autistic Society, said:

With the right support at the right time, people with autism can live rewarding and fulfilling lives which is why we campaigned hard to secure this Quality Standard.

The first step to getting the right support is having timely access to diagnosis so speeding up the process will have a significant impact on the lives of thousands of people with autism in England, many of whom have waited or are waiting, to obtain this critical milestone.

The Standard recognises that people with autism can also have mental or physical health issues. Professionals need to understand that all of a person’s issues need to be looked at when providing support and so services should rightly be judged on their ability to do just that.  

This Standard will also allow for services to be measured on how they respond and treat challenging behaviour and makes it clear that people with autism should not be prescribed medication to address the core features of the condition.

People with autism have campaigned long and hard for their needs to be addressed when professionals are designing support and services: measuring progress against this Standard will help to ensure that this happens.”

The Quality Standard can be downloaded from the NICE website. 

MPs quiz Care Minister on key campaign demands

MPs continued to maintain pressure on the Department of Health to meet its commitments under the Autism Act, as the National Autistic Society’s ‘Push for Action’ campaign was raised in Parliament during the Health questions session.

Angela Smith MP asked the Secretary of State for Health when he expected the revised adult autism strategy to be published. Responding on behalf of the Government, Care Minister Norman Lamb said that the review and revised strategy would be published at the end of March 2014.

Ms Smith also asked the Minister if he would consider the NAS’s proposals to introduce an ‘innovation fund’ for local councils to encourage the implementation of new and innovative models of service provision for people with autism. The Minister commended the Push for Action campaign and the work of the NAS. He confirmed that the Department was seriously considering these proposals and that they have ‘real merit.’

Chair of the APPG on Autism, Robert Buckland MP also asked the Minister how he plans to use the review to bring forward programmes to increase autism awareness amongst the general public. The Minister accepted that general awareness of autism is still low but that the strategy review provided an opportunity to ensure that implementation makes a real difference on the ground for people with autism.

The Minister’s comments were encouraging, particularly with regards to our proposals for an innovation fund. We are also glad that the Department of Health recognises that there is still much more work to be done to ensure that the spirit of the Autism Act is maintained in the revised strategy and that people with autism get the support that they need. 

Tom’s campaign blog #6: NOISE.

You know that feeling when you suddenly realise that the kitchen extractor fan has been left on since you finished cooking and then you turn it off and suddenly the atmosphere seems incredibly calm and soothing and down-right wonderful and even though you hadn’t actively ‘noticed’ that noise was there while the fan was on its new-found absence makes you feel like a twenty-tonne weight has been lifted off your shoulders? It’s nice isn’t it?

Anyway, as a man who likes a convoluted analogy, that’s my metaphor for using local media to help win a campaign. I’ll explain…

Last month, we launched an action asking our army of campaigners to write to their local and regional papers raising awareness of autism and the Push for Action campaign, using Susan Boyle’s recent announcement that she has Asperger syndrome as a handy news hook. Hundreds of you acted (thank you!), and as a result we’re now seeing hundreds of your letters in the papers, with more being spotted every day.

Each letter on its own is valuable. Maybe a few thousand people will see it, and a few hundred will read it properly. Some of those people are even likely to be local councillors, service directors or MPs. (We know from research that most MPs always read the letters pages of their local papers.)

But the action’s main effect, much like the extractor fan in my clunky and poorly-judged nimble and near-perfect analogy of four paragraphs ago, is to create that constant background ‘noise’ about autism and about the campaign. People might not even consciously know that its there, but trust us: it will be having the desired effect.

Back in 2011, we were campaigning hard against some of the proposed changes to Disability Living Allowance and launched a similar press action which also got excellent pick-up. A few days later, out of the blue, I got a phone call from a press officer at the Department of Work and Pensions. “We’ve been picking up a lot of local press on the issue of autism and DLA reform”, he explained. “Would you mind coming in to the office to talk to us about your concerns?” The ‘drip, drip’ of coverage we’d generated through these simple letters-to-editors, even though it was just in local papers with often tiny circulations, had reached the heart of Government on a crucial policy area.

When stories about autism are popping up everywhere, appearing in the papers, websites and Twitter feeds it creates the sense that the issue is current, urgent and relevant. And that makes it that much easier for campaigners like us to get the traction we’re after, be that in Whitehall or town halls. Members of the public are more likely to be supportive, MPs are more likely help out, and the Government is more likely to listen.

So, please keep sending those letters. You can be the extractor fan to the Department of Health's kitchen. Or something.

Tom Madders,
Head of Campaigns