Tag Archives: National Autistic Society

Furness National Autistic Society Push for Action

furness pushThe 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. projection

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.

Piers and @TomMaddersNAS #pushforaction in downtown Barrow-in-Furness.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 jenson1members 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.furness forum

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.

gerryLast I heard he was being met by Gerry Marsden of “Gerry and the Pacemakers“ fame after taking a “Ferry cross the Mersey” from Liverpool to events organized by Wirral Autistic Society.

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.

World Autism Awareness Day

Logo of World Autism Awareness Day, figures holding hands around a globe

World Autism Awareness Day is marked on Tuesday April 2. It was established in 2007 by United Nations Resolution 62/139.

According to Autism Speaks:

This UN resolution declares WAAD as one of only four official health-specific United Nations Days and will bring the world’s attention to autism, a pervasive disorder that affects tens of millions. The World Autism Awareness Day resolution encourages all Member States to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges.

Raising awareness is fine and the National Autistic Society has a full programme on the day including a live webchat with Chief Executive, Mark Lever and a special Autism supplement in the Independent newspaper. The NAS also points out that raising awareness matters because

a lot of myths still surround the condition. These misconceptions can have a damaging effect on the lives of people living with autism, making it more difficult to have their condition recognised and to access the support they need.

One of those myths, perpetuated by narratives like the one above from Autism Speaks and the wording of the UN Resolution is that autism is primarily a problem of childhood. Early diagnosis and early intervention are indeed often associated with positive outcomes. But what about adults? If you missed out on the early stuff does that mean it is too late for you? Autism Speaks has another narrative for that.

World Autism Awareness Day shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe.

The key words here are growing global health crisis and autism epidemic. The recorded prevalence for autism has grown dramatically in the last twenty years. The generally accepted figure today is 1 in 100 or 100 in 10000. I take this as a vindication of the pioneering work of Wing and Gould(1979) in establishing a prevalence of approximately 20 in 10000 for autism and related conditions in a special school population in Camberwell, Middlesex in the early 1970s together with the work of Ehlers and Gillberg (1993), who established a prevalence of approximately 70 in 10000 for Aspergers and related conditions in mainstream education in Gothenburg. These studies are referenced in a discussion document on prevalence on the NAS website. Probably the best explanation of the growth in numbers is the redefinition of autism as a broad spectrum condition affecting individuals of all levels of cognitive functioning instead of a narrowly defined disorder. Pressure from parents and, latterly, self advocacy by autistic adults has also helped to push autism up the agenda and modern epidemiological studies using the latest diagnostic criteria have revised the figures upwards from the 5 in 10000 of the early studies in the 1960s.

Autism Speaks, along with a number of parent advocacy groups, primarily in the United States but with representatives in many countries around the world, argues that the growth in numbers cannot be explained by increased awareness, improved methods of ascertainment and the broadening of diagnostic criteria. Instead we are presented with the narrative of an epidemic. And as twenty years is too brief a time-span for a genetic epidemic there must be an environmental cause. Or causes. At one time vaccines were in the dock. In the UK MMR was identified in studies that were at best inept and at worst fraudulent. In the USA thimerosal was indicted. The evidence for these claims has been  refuted yet again but campaigners insist that there must be something or some things, in vaccines, in the atmosphere, in food or household chemicals or maybe an unspecified combination of them all contributing to the so-called epidemic.

This is bad for three reasons. Firstly, quack doctors continue to prey on parents and persuade them to subject their children to costly and potentially harmful treatments that have no basis in science.  Secondly, the rhetoric of the epidemic has created a fear of a coming deluge of severely disabled autistic adults who will swamp health and care services. These fears have been fuelled by coverage of a recent survey purporting to show that one in fifty children in the USA are autistic. Emily Willingham makes the important point in her discussion of this story that much of the increase is in teenage children, predominantly boys, in mainstream schools.  They are emerging as autistic now, not because of environmental toxins, but because factors now at work in their social environment make their autism more obvious. If you are a reasonably intelligent autistic child you can learn to get by unnoticed by imitating your peers and learning the rules. Then all the rules change in adolescence. No one tells you they have changed and you are busted. Plus you are changing as well. Teenage years are difficult for everyone. Imagine trying to navigate your way through adolescence with the added impairment in social understanding that features in autism.

But most autistic teens do get through it and can become contributing members of adult society if society is prepared to make the necessary adjustments and accommodations to meet their needs. This is  happening in the world of physical disability with technical advances in the design of wheelchairs and other prosthetic devices alongside a social revolution in attitudes and a willingness to spend money on lifts, ramps and other means to make our public spaces and workplaces accessible to all.

But there is a third and potentially more damaging consequence of rhetoric like that employed by Autism Speaks. If autism is presented as a new and growing threat, the many autistic adults who already exist and are struggling with needs that are unrecognized and unmet will, in the words of a previous NAS campaign, continue to be ignored or ineligible. While research funds concentrate on finding causes and cures in order to head off a tragedy fabricated out of fear and uncertainty,  the certain tragedy of adult lives mired not because they are different but because we are indifferent will continue.

In my private life as the parent of an adult autistic son, in my professional life as a teacher in special education and in my public life with the National Autistic Society I am well aware that autism does bring enormous problems. But these are compounded by misinformation, misunderstanding and the missing resources that could make all our lives so much easier. If Autism Speaks really wants World Autism Awareness Day to be an occasion to celebrate the unique talents and skills of persons with autism and [be] a day when individuals with autism are warmly welcomed and embraced in community  they should spend less time scaremongering about autism and pay more attention to what autistic people and their allies are saying. Autism Listens perhaps?

Autism, Ethics and the Good Life: Is increasing functionality always good?

Leneh Buckle is autistic, an academic and a parent, although none of her children are autistic. Her biography for the conference handouts notes that as child she “was considered severely autistic and learning disabled. Having gained the communication and interaction skills she was predicted never to achieve, Leneh feels she has lost something very special in the process. Hence the title of her presentation.

Is increasing functionality always good?
Functionality is functional in practice.
Why increase functionality?

to minimize suffering

to maximise happiness

to increase autonomy

to increase distributive justice by sharing the benefits of society.

Autism Specific functionality
Enhancing communication or expression makes social interaction more rewarding for the child and for the carers. This makes them better carers which clearly benefits the child.
Enhancing independence and productivity has clear benefits for the autistic person.

Why not increase functionality?
Ignorance is bliss. No drive to communicate so no associated problems.
Cost or risk to benefit ratio has to take account of the risks associated with some treatments and their financial cost.
There is also the cost to the child in terms of loss of freedom and time to be a child. Some treatments are intensive and can interfere with an ordinary childhood.
There can be a loss of self esteem if your awareness of goals includes awareness of your inability to reach them.
Some treatments can be mentally invasive.
Superficial gains in communication can be deceptive.
Gains can raise expectations that cannot be met.
Identity can be effected. The feeling of being in between two worlds can make you more lonely.
There is also the possibility that normalization can lead to the loss of special skills and autistic traits that you value.

Personal Autonomy 
Having personal autonomy and being able to make decisions is good.
But autonomy requires communication which may require interventions to increase functionality.

Personhood
Your sense of personhood is not just about autonomy in the social world. It is about autonomy over your inner world.
When making ethical decisions for others (eg parents and professionals making decisions for children) and determining their best interests, we should be clear about whether we are seeking to mitigate impairments or enhance existing predispositions.
Increased functionality should not happen at the expense of  a loss of personal identity.

Conclusion 
Increasing functionality is a good that should be measured against the yardstick of enhancing personal autonomy and self esteem while protecting a person’s sense of who they are.

I am afraid that my notes do not do justice to a very thought provoking presentation. At one level we can all harbour regrets for the loss of innocence that is an inevitable part of growing up. But for most of us this seems like a natural process, albeit one that is profoundly influenced by the social and cultural values of the society in which we are raised. But what of the autistic innocent who seems indifferent to or unaware of these values? How far should we intervene in order to engage them in these linked processes of socialization and acculturation? Buckle reminds us that the benefits of increased functionality in the social world are not automatically to be welcomed. They have to balanced against their costs.

There is another question as well. What about those people whose autism is so severe, or those who have what is sometimes termed severe learning difficulties or cognitive impairments? What does living the good life with autism mean for people whose level of dependency will always outweigh their potential for autonomy and independence? These questions were addressed by Virginia Bovell and Eva Feder Kittay in the next two presentations and will be the subject of future posts.

What should our funding priorities be for autism?

The following poll has been posted on the UK Autism Linked In Group

At a time of limited public funding, what in your opinion is the most important area to tackle (I realise that it is important to do all these things, and I’m not advocating to drop any of them.

 

  • To research the causes of Autism.
  • To improve the diagnosis of Autism.
  • To offer support to people with ASD.
  • To offer support to parents.
  • To improve facilities in schools.

Despite the poll attracting very little attention I mention it because two of the comments express views that are widely held but rarely subject to scrutiny.

The first is that

Early intervention makes such a long term difference if provided in a timely and structured way.

It does not really matter which interventions we are talking about, although advocates for early intensive behavioural interventions consistently make this claim. They may be right but where is the evidence? Most studies concentrate on benefits to children compared to control groups that do not receive early intervention or else they compare benefits from differing versions of early intervention. There is very little research into adult outcomes and how they correlate to early intervention.

When Professor Patricia Howlin delivered the 2012 Centre for Research in Autism and Education (CRAE) Annual Lecture she cited figures from Shattuck et al (2012) that out of 11000 items of autism research published between 2000 and 2010 only twenty three pertained to adult interventions and services. The National Autistic Society campaign I Exist was precisely about the difficulties that adults encounter in accessing services they need in order to enjoy a full life. Our current campaign around implementation of the Autism Act is meant to ensure that local authorities meet their obligations under the Act to provide services for adults and do not use the current economic crisis as an excuse to do nothing or even cut back on existing services.

The second comment that

parents […] are most likely to be the key carer in any child’s life

is true for children. But children become adults and usually outlive their parents. Furthermore, those adults who are judged to lack capability to care for themselves are the responsibility of social services departments. Parents may still be heavily involved but they have no rights regarding the decisions taken on behalf of their adult offspring.

It is fair to debate whether parents or government agencies are best placed to identify the needs of adults, whatever the reason for their mental incapacity. But we will all be orphans one day. And so will our children. Sooner or later they are going to have to manage without us. Surely it is better to encourage that in our lifetime while we are still there to ease the transition.

Children have the right to an independent life. We have the right to enjoy the empty nest once our children have grown up. If that is not happening because of deficiencies in the system, those deficiencies will still be there when we are dead and gone.

So I voted to prioritize resources for adults. Not only do we owe it to the generations who have been under diagnosed and ill served up until now, such interventions have been shown to be cost effective. The National Audit office Report, Supporting People With Autism Through Adulthood found that identifying autistic adults and targeting services to meet their needs would actually result in a net saving by reducing the inefficient use of existing resources.

I am not advocating a pity party in which differing parts of the autism community vie for sympathy and support in order to maximize their share of the cake. We need a bigger cake and we need to challenge the assumptions of those who run the bakery. I question the predominant idea in autism that if we can fix the children it will be alright. The practical obstacles to finding a “fix” are enormous. And the ethical dimension has scarcely been considered, something I will begin to address in my next post. Meanwhile there is a lot we can do to fix society’s attitudes to autism and the social policy agenda that is causing needless harm and distress to vulnerable adults. Our children are tomorrow’s adults. So let us Act Now and Act Together for all their futures.