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

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

Tom's campaign blog #5: Push for Action so far… in numbers!

It has been almost four months since we launched our latest major campaign, Push for Action, our new campaign to influence the Government’s review of the adult autism strategy and improve the support that adults across England receive.

So much has happened since May, we thought we’d break it down for you in numbers to make it a little more digestible…

8,098 of you have signed the online petition to support the campaign. This is a record number for an NAS campaign (our previous best was 6,000 for the Autism Act) and it really helps us get national and local decision-makers to listen. We’ve already sent every MP a local dossier with the names and comments from all of their constituents and we’ll be delivering the full petition to 10 Downing Street in October.

4 national policy wins for the campaign since launch, and counting. Among other things, the Government have agreed to our demands to improve data collection, to make the self-assessment checks tougher for local authorities and to consult people properly as part of their review. A great start, but a long way to go.

19 local and regional autism charities have signed up as partners in the campaign, and along with our army of NAS branches, are championing Push for Action and campaigning for changes where they are. Read about what’s been happening in Hayle, Bedfordshire and Furness on our blog.

45 shops in Godalming, Surrey are now hosting brilliant autism awareness posters after the adults at our Horizons service pushed for action in their local area.

61 MPs turned up to our launch event in parliament and new independent research found that 35% of MPs are now supporting the campaign. With plenty of exciting Westminster action scheduled for October, that figure should continue to rise as we turn up the heat in parliament.

11 stops on our tour of the Travelling Button! Our big red button will be making its way round the country in October to pay tribute to some of our action hotspots and help us raise more awareness of the campaign. Watch this space to see if it will be coming to a town near you!

6 months still to go until the Government reports on the Autism Strategy Review, so that’s six months more to keep building the pressure. There’s plenty you can still do, whether that’s getting autism on your local NHS’ agenda, taking part in a Government focus group and completing their survey, sharing our campaign infographic and video, or signing our petition if you still haven’t done that!

Keep an eye on this blog for more updates.

Tom Madders,
Head of Campaigns

Tom's campaign blog #4: "No-one cares and they never will"

We always love hearing from you, whatever you’ve got to say. And the overwhelming majority of what you’ve told us about Push For Action so far has been incredibly positive, which makes us especially happy.

But, of course, we get less positive feedback too. Sometimes people are angry with us – frustrated that we haven’t been able to do more where they live. Occasionally people feel like we’ve not represented their views as well as we could have. And often, people are feel tired and frustrated with campaigning, and simply seem to be asking us: “What’s the point?”

The below is a message sent to me a couple of months ago in response to a request to support the Push for Action campaign:

“I would but it won’t work so I won’t do it. Honestly, I would push that big red button 20 million times if I believed this could really happen. No-one’s going to fund it, no-ones going to listen. We’ve been trying to get people to listen [where I live] for 3 years. Nothing changes no matter how flash you make your website look or how many people you convince to press your red button. Sorry.”

And here’s an extract from another more recent letter on a similar theme:

“As we both know, the Autism Act is a pointless piece of paper and quite why the NAS celebrated when it came into law I will never know. The act has no claws, there is no penalty for a local authority who does not or is unwilling to set up services for Autistic adults.

There is no preventative action and I doubt there ever will be. Clearly they would rather risk the costs of sectioning someone rather than help them. So I despair when you ask me to push for action, because there is very little point, they will not listen to me and they cannot be made to anything.”

I suspect these correspondents speak for many of you. Scratch that – I know they do, because we talk to lots of you who feel the same: you feel like you’ve been screaming into the abyss for weeks, months, years – and you don’t want to fight any more.

So in an attempt to answer to more of you than just those who have taken the trouble to write in, here is an extract from my response to the second writer I have quoted for those of you who are perhaps feeling disillusioned. I know we'll never convince everyone to get involved, but I want to make it clear to you why we ask you to to begin with.

“Thank you for getting in touch with your thoughts, I appreciate it. I disagree with a few of your points but I also entirely understand and share your frustration.

I disagree with your point that the Autism Act is pointless. It isn't perfect, but it does – for the first time – set out in law that someone, both within the Department of Health and at each local level, has to take responsibility for improving the lot of adults with autism. That might not seem like much, but because of that and the other duties set out in the statutory guidance that came out of the Act, we are genuinely beginning to see some very good progress in parts of the country – and levels of progress that we certainly would not have seen without the Autism Act.

But – and this is a significant 'but' – we haven't seen nearly enough of that progress. Too many local authority areas have been able to get away with doing very little or almost nothing at all. Most of those who are making steps forward are doing so too slowly and too patchily. Times are tough financially, but that's no reason not to ensure they are meeting the needs of a significant chunk of their local populations, particularly as there is now statutory guidance telling them to do so.

There is currently far too little preventative action out there, I absolutely agree. But I hope and sincerely believe that the Autism Act – backed by the Push for Action campaign and our army of campaigners – will change that. I am a professional campaigner, and I do this job because I know that it works. When people come together round a common issue, have a legitimate complaint and a clear pragmatic solution to resolve it, and make enough 'noise' in the right way, it really can and does get results. It's rarely easy or quick – and of course it won't always work. But I'll tell you this: the areas where we've seen real progress are almost always the areas where there's a strong campaigning presence. And that's no coincidence.

It is absolutely your choice as to whether or not you want to get involved, and as much as I'd love to have your support I am not going to implore you to do something you don't want to do. But I do firmly believe that the autism community working together is the only way of achieving real, lasting change across the country. That's why we launched Push for Action – to give people something to get behind, to work together on, to push for change in their communities.”

Tom Madders.
Head of Campaigns

www.autism.org.uk/push

Tom's campaign blog #3: Six reasons why the Autism Act is just like Andy Murray

Marvel as I attempt to link Push for Action to a popular current news story.

Bear with me. This could be painful.

1. Both started weak and got muscles

In the early days, Andy Murray was criticised for being too weak to compete with the big boys. But he beefed right up and started flexing his muscles to adoring fans. Then he started making an impact.

In the early drafts, the guidance that came out of the Autism Act was criticised (by us) for being too weak compete among other local priorities. But, with your help, we campaigned and got it beefed right up, to be published to an adoring public. Then it started making an impact.

2. Both need your support

Murray often explains how the fans cheering him on give him an extra edge on court – how he wouldn’t keep reaching those semis and finals at Wimbledon without them behind him.

Likewise, the Autism Act and its accompanying strategy will only ever achieve so much unless people get behind it, keep pushing it and championing it. It’s our autism campaigners that can give it its edge.

3. Neither are much to look at

4. Both haven't yet fulfilled their potential

Murray is good at what he does (playing tennis). The Autism Act is good at what it does (setting a statutory framework to improve support for adults with autism). But so far, both are nearly-men. (Or nearly-pieces-of-legislation.)

Murray still craves his crowning glory, the historic Wimbledon victory that would be his legacy. The Autism Act still craves its own ultimate goal – for all adults with autism to receive the support they need. (70% of adults with autism told us that they don’t.)

5. Both have come a long, long way in the last 2-3 years

For a while, it looked like Murray might never win a Grand Slam. By this time in 2012 he’d reached four finals but found the mighty Federer or Djokovic in his way. Until later that year he finally claimed Olympic Gold and Silver medals and the US Open title.

For a while, it looked like local authorities might never improve support for adults with autism. 2-3 years ago many didn’t even have a member of staff with responsibility for autism, let alone services and support for this group. But the Autism Act is changing that. Now almost all local areas have an appointed ‘autism lead’ and many are starting to put some excellent practice into place. They’ve come a long way, but there’s still an even longer way to go…

6. Both could become the greatest this year. Or not…

This weekend, Murray might finally win Wimbledon.

This year, the Autism Act might finally start transforming lives across the country.

But only if you Push for Action.

Tom Madders,

Head of Campaigns

Tom’s campaign blog week 2: Relationships

This Wednesday evening I had the pleasure of visiting the AGM of our NAS branch in Hertfordshire to talk to them about the Push for Action campaign. The AGM also marked the end of an era, as Laurence Griffin, the long-serving Branch Officer, and his wife Ann were stepping down from their formal roles at the branch.

We spent some time at the meeting reflecting on what they have achieved in their time in charge of the branch, and quite simply it has been remarkable. As well as their numerous other achievements, their campaigning – working alongside the council – over the past eight years has led to incredible changes that will lead to real differences in the support people with autism and their families receive locally.

To name but two (of many) breakthroughs, Hertfordshire County Council (HCC) have recently announced a new specialist Asperger’s team for adults in the area. And at the end of the year, the Council have agreed to thoroughly scrutinising their provision for people with autism in the area. These steps both represent excellent progress and are a credit to the council as well as the branch.

And the key to these breakthroughs? Relationships.

Laurence, Ann and many others at the branch spent years building strong, positive relationships with the relevant people at the council and with numerous other partners. They have no doubt been helped by having some committed, proactive professionals within HCC to work with. But by remaining solution-focused, pragmatic, rational, polite, patient and – yes – persistent, they became people who the council wanted to engage with. They didn’t need to shout to get listened to, because the decision-makers wanted their valuable input. And they had built the partnerships to ensure that people across the county were working together towards a common end.

From the outside, ‘campaigning’ is often viewed as aggressive and intrusive – placards and loudspeakers, pitchforks and torches. And yes, sometimes ‘noise’ works and can be effective when the circumstances demand it. But Laurence, Ann and the rest of the branch should be proud to role-models for the quieter, less ‘showy’ but ultimately more effective brand of campaigning. The results speak for themselves.

If you’d like someone from The NAS to come and speak to you about Push for Action and how you can get involved, please email campaign@nas.org.uk. Our local authority guide should also be helpful to those of you wanting to take further action locally.

Tom Madders,
Head of Campaigns

Tom’s campaign blog week 1: the end is the start

“This is not the end. This is the start.”

I had to remind myself of this on Tuesday. So much energy, anxiety and hype comes with a campaign launch that from the inside, sometimes it feels more like we’ve already built to the climax – the grand finale. But of course it is only the beginning.

And what a beginning it has been. So many exciting and impactful things have happened already, I need far more than a mere blog-post to fill you in. For now, I’ll try to pick three highlights.

1. Cupcakes in parliament

Holding events in parliament can be a nerve-wracking experience. Will any MPs show up? Will they be convinced by our message? Will they get behind us? But this time, nerves were minimal. We just had a feeling we’d got this one right. And we were proved right, with a whopping 60 MPs showing up to find out what was going on in their area, speak to our ambassadors, eat our delicious cupcakes (thank you Lola’s!) and commit to taking important actions to help people with autism in their constituency. Not a bad start at all.

2. Cumbria takes the lead!

The success of this campaign is so dependent on our campaigners spreading the word locally. We’ve gathered the support of local charities as partners in the campaign (more on these in a future blog) who are already helping get the word out there. But special mention this week needs to go to the NAS Furness Branch, who at this moment in time are just a few shy of getting Cumbria up to 100 sign-ups! If all our branches and local partners manage the same, we’re in for some campaign.

3. Our infographic debut

It’s been a great week for social media with tweets from celebrities Stephen Fry and Francis Boulle, hundreds of people watching our campaign videos and loads of you commenting on the Facebook wall on the website.

But perhaps best of all has been the campaign infographic – which we love – and which has already been shared by over 750 people. This social sharing is so important in spreading the word, so if you haven’t already please follow this link and share it with your friends and followers.

Thanks so much to everyone who has already done anything to support the campaign. It’s a long road ahead, but the momentum is already building thanks to you.

Keep on pushing!

Tom
Head of Campaigns