Catch up with Jenson's travels

'Jenson', our traveling button, has been rather busy these last couple of weeks, meeting campaigners and raising awareness of the need for better support for adults with autism. 

If you haven't been following his adventures on Twitter @NASButton, you might want to catch up here on our specially crafted Storify page.

Enjoy!

The view from Barrow-in-Furness

Mike Stanton is an NAS councilor and lives in Barrow, Cumbria. Our 'traveling button', Jenson, came to visit his local branch, which prompted him to offered his thoughts on the campaign in his blog.

Read what he had to say, below:

The National Autistic Society has been running an unusual campaign, Push for Action, that is probably one of it’s most successful in terms of participation and outcomes. That is not what makes it unusual. The NAS has a track record of successfully running campaigns that impact upon public policy regarding autism. Its most high-profile success to date was the campaign to get the Autism Act onto the statute books. This Act specifically tasks relevant government departments, along with local health and social services with identifying the needs of autistic adults and taking steps to meet those needs. Unfortunately, implementation of the Act has taken place in the context of the severest cut back in public spending ever that flowed from the financial meltdown of 2008 and the subsequent years of economic recession.

Which brings us back to Push for Action. The most important component of the Autism Act was an obligation on government to develop a coherent strategy for supporting adults with autism. That strategy is up for review next year. It is not perfect but the fear is that the government will use the economic crisis as an excuse to lower expectations and further weaken the provisions of the strategy. Push for Action is a response to that. What makes it unusual is that, instead of targeting senior politicians and civil servants in central government the campaign has been deliberately local. The success of the Adult Strategy depends on what happens in local health authorities, local government commissioning agencies, local education and housing departments. So people have organized locally

1. to identify good practice and celebrate it
2. to put pressure on local bodies that are not yet meeting their legal commitments
3. to raise awareness and understanding of the problems that local adults with autism have to deal with.

One brilliant idea has been the travelling Push for Action Button. Nicknamed Jenson, after the eponymous formula one racing driver, it has toured the country, providing a focus for local campaigners and helping to bring campaigners together from around the country. I saw this at first hand when Jenson came to Barrow-in-Furness. Furness NAS had already been busy signing up supporters and also has links with the local police going back to the launch of an autism alert card by Cumbria Constabulary in conjunction with the NAS. So when they knew that Jenson was coming they arranged for the news to be projected on the side of Furness House in the town’s main square from an upstairs window in the local police station. 

I heard about it in a tweet on Tuesday night while sharing a pint with Tom Madders, who leads the campaign team at the NAS and was in Barrow for a Push for Action event the following day. We headed over to the town centre and met up with Piers Wright, who had carried the Button over from Sunderland that evening.

 We made the most of this photo opportunity and then had another beer to discuss the campaign. I was impressed by the enthusiasm of Tom and Piers, following a punishing schedule around the country (Sunderland, Barrow, Carlisle, Liverpool, Birkenhead in three days was just this segment of the tour) They were impressed by the enthusiasm of the NAS members and branches around the country and the warm reception from other autism organizations like Sunderland’s Autism Research Unit and Autism in Mind who had turned out to welcome Jenson and add their weight to the campaign. And this local campaigning is having an effect. Areas where implementation of the strategy had been minimal or tokenistic are taking real steps forward now. One problem with the Strategy is that a lot of the backroom work has been done in many areas but up front, positive action and new services are yet to emerge. This is beginning to change as the campaign brings people together and pressure to bear on local authorities.

Forum 28 hosted Barrow’s Push for Action event. The Mayor turned up with local media in tow and over a hundred new people signed up for the campaign. I could not attend as I was teaching that day. But I was heartened when one of our parents arrived in school sporting her Push for Action T shirt. Jenson was supposed to visit the school as well. But he got a better offer from Border Television News. Another time perhaps.

Push for Action is a local campaign for local people that is having a national impact. Instead of the normal route of an advocacy organization like the NAS mobilizing its support to lobby government ministers and MPs, Push for Action has created genuine grassroots support for the campaign amongst people whose lives are not directly affected by autism. This popular support has a way of feeding into the political process that can be more effective than professional lobbying campaigns. As a result half of all MPs are aware of the campaign and over a third have come out in support. The government has agreed to a proper public consultation when it reviews the strategy next year. Local authorities are to be given stricter criteria for assessing compliance with the strategy. The government has agreed to collect local data on adults with autism for the first time and support the right to advocacy for vulnerable adults. Perhaps best of all, given that doctors in general practice are the gatekeepers and under new health service reforms, the commissioners for many services, The Royal College of General Practitioners has agreed to make autism a learning priority for GPs for the next three years.

So congratulations to Tom, Piers and Jenson. But most of all, thank you to all those people who give their time to build NAS branches and all the other organizations and individuals who have come together around the campaign to guarantee a better future for autistic adults.

"I am here today to urge you not to forget people like my brother."

On Tuesday 15th October NAS ambassador Sam Mukherjee, accompanied by her brother Indi, spoke at our parliamentary reception for Push for Action. Read the full transcript of her moving speech, below.


"My name is Sam; I am a research psychologist and the proud sister of an amazing individual. My little (big!) brother is Indi, he is 18 and we are just about managing to keep our heads abreast. Indi was diagnosed with severe autism and learning difficulties at 2.5 years. We knew something was askew when he didn't reach his childhood milestones, he was reticent and found it extremely difficult to engage with everyone around him. I can only imagine how isolated he must have felt. The diagnosis was the first step towards the right direction for Indi as well as the rest of the family. However, it's an ongoing battle.

"Indi uses very simple Makaton (which is a sign language), gestures, pictures and has a limited vocabulary to communicate how he feels. He navigates society and its social structure via a series of simple and finite guides, timetables and social stories. The world is incredibly difficult to orientate himself to and hence exceedingly difficult to navigate. He is an incredibly polite, loving, astute, caring and emotionally aware individual. But the rigid thinking structures, limited social skills and communication defer him from living what you and I would call a neurotypical life.

"It's been incredibly difficult to get the support he needs. We are in austere times and that has made it even harder to find support. Indi goes to a specialist school in his borough for children and young people with a learning disability. However, his SEN statement lasts until 19. Post 19 education is extremely difficult to navigate as placements are dependent on funding. There are very few specialist services available to help young people like my brother. He needs appropriate independent living or life skills. I want him to achieve his fullest - as much independence and self sufficiency as possible. If that means he can make his own cup of tea, without any prompts or verbal suggestions then that is fantastic.

"His extremely trusting nature and lack of communication skills make him incredibly vulnerable. And of course we are not the only family that has had to go through endless meetings to get even the most basic of supports. Last year was extremely turbulent as Indi went through and is still going through transition- that is moving from children's to adult services. We have just started respite for him - so he goes away twice a month for an overnight stay. That gives him and us a much needed reprieve. We have had to deal with school site movement- which led to a complete breakdown for Indi; lack of care or support providers and uncertainty about Indi retaining his school placement. So that's worrying about education, health and social services all at the same time.

"Don't get me wrong, we have moments of exceeding highs and triumphs but they are mixed with a continuing inertia of lows. Having access to adequate and much needed support services is a constant issue and a constant battle. Add to that Indi is whom we see to have substantial needs. I can only imagine how much more difficult it is for those on the moderate to mild scale on autism.

"Currently, efforts are being made to implement the strategy in my borough and I am trying to aid in that but in austere times when everyone is fighting for the same thing- which is essentially more support, I feel that those who are least vocal will get left behind. That means people like my brother who don't have a voice to begin with and are unable to highlight their plight. I am here today to urge you that please don't forget them. Please remember the vulnerable who need our support the most."