Tag Archives: National Autistic Society

Thank you to Lorna Wing, Ruth Christ Sullivan and so many more

4 Nov

Last weekend I was having lunch with my kid. Yes, we interact a great deal in these lunches but, yes, I also take some time to read. I was re-reading Steve Silberman’s book Neurotribes. There is a great deal of discussion in Neurotribes of people who changed how we understand what autism is, as well as how we (we =autistics and non autistics) relate to autistic people. Much of this comes out in one of the last chapters, where the discussion of how the film Rain Man came to be produced. Two of the many names that came up were Lorna Wing and Ruth Christ Sullivan. Both were parents of children with very high support needs. Especially in their time, the people involved in shaping the understanding of autism and autistics were largely parents.

Both Wing and Sullivan had children with high support needs. And, yet, Wing was instrumental in bringing about the understanding that autism is not just about people who were like her child. Wing brought the work of Hans Asperger from out of obscurity. None of this “not like my child” stuff. Sullivan helped found the National Society for Autistic Children (what we know today as the Autism Society of America). She was lobbied to get special education passed in the U.S..

And as I read about them, again, I was struck with, “I never wanted to be a part of advocacy. I just want to live my life with my family.” I want to quietly eat lunch with my kid and read books, and probably not autism related books.

It wasn’t until later that a few things dawned on me.

I was sitting in a restaurant, having lunch with my kid. A kid who is very, very clearly autistic. And who was being very, very obviously autistic. Something Lorna Wing and Ruth Christ Sullivan almost certainly couldn’t do. And something that is only possible now because people like them (as well as many others, including autistics) accomplished in acceptance.

Seriously, in their day I would have been asked to take my “retard” kid out of the restaurant and not come back.

I am able to sit in a restaurant because my kid attends an excellent school. I won’t go into details, but, yeah, good school = better life for all of us. And without special education laws that wouldn’t happen. And without the understanding of how to support autistics, brought about by so many that came before me, a good school wouldn’t even exist, law or no law. That school and our opportunity to send our kid there exists because of the hard work of so many people who came before me.

I’m no Lorna Wing. I’m no Ruth Christ Sullivan. I’m not one of the many autistics who have helped change the world–autistics who are “not like my kid” but who have, nonetheless, helped get my kid and me into a world where we can sit on a quiet Saturday afternoon and eat noodles. One of us being clearly autistic, and the other reading a book. And most of all, both of us welcomed.

So I’ll try to keep doing what I can to help keep progress happening.

by Matt Carey

Torturers of Autistic Man Walk Free

14 Oct

Taken verbatim from the NAS website. this is a very distressing story that needs to be widely publicized.

The National Autistic Society has reacted in anger at the news that three men who attacked and tortured a young man with Asperger syndrome have been denied a custodial sentence, and we need your help in calling for the Attorney General to review the ruling.

The victim, who is 17 years old, was subjected to a three day ordeal during which he was brutally and maliciously tortured. However, his assailants – Jack Bolton, Andrew Griffin and Nathan Marshall – were handed a meagre 80 hours of community service for their crimes. The victim’s family described the ruling as a “joke”.

To support our campaign to review the ruling and demand a tougher sentence for the perpetrators of the crime, please follow this link. We have set up an email action directly to the Attorney General’s office, demanding a review – it should only take you a couple of minutes to do.

Mark Lever, Chief Executive of the National Autistic Society, was “sickened” by the news, and labelled the judgement insulting:

We are sickened and appalled, not only by the heinous acts of violence committed against a vulnerable young man with autism, but by the abhorrent leniency shown to the perpetrators. Their sentence is profoundly insulting to people with autism and their families and in no way reflects the lasting damage disability hate crime inflicts on victims’ lives.

The National Autistic Society will be looking to work closely with Hazel Blears, who is the victim’s constituency MP, to seek Government action on this specific case. We will also be calling for firmer Government action to address wider issues around disability hate crimes. In representations to Dominic Grieve QC MP, the Attorney General, we will be calling for him to review the ruling.

Read our official media response to this story
Read the full story on the Daily Mail website (We would like to give advance warning that the content of this story is very distressing.)

Landmark autism law passed today

22 Oct

The Autism Bill passed its final stage in the House of Lords today to become England’s first ever disability-specific law. The National Autistic Society (NAS) heralded the new law as ‘groundbreaking’ and said health and social care services could now face legal action if they failed to provide support for people with the condition, which affects over half a million people in the UK. The Autism Bill started out as a Private Members’ Bill drafted by the NAS on behalf of a coalition of autism charities and was championed through Parliament by Conservative MP Cheryl Gillan. It has had support from all parties.

Mark Lever, chief executive of the NAS, said:

“Thousands of adults with autism told us they were experiencing serious mental health difficulties due to a lack of support. After a year of lobbying, this is the watershed moment they have been waiting for – this law could literally transform lives. It will add serious weight to the forthcoming adult autism strategy so now we’ll be keeping the pressure up on Government to make sure they get it right and deliver lasting change for people with this serious, lifelong and disabling condition.”

“I’d like to thank everyone for their support. It is extremely rare that a Private Members’ Bill goes on to become law, so this is a triumph for people with autism and their families. It’s a real testament to the overwhelming level of parliamentary support for this chronically excluded group. I hope it will make the crucial difference in their lives that people with autism need and deserve. We’d like to thank Cheryl Gillan MP and the thousands of autism campaigners, MPs and peers for their support – together we have made legal history.”

Once it receives Royal Assent the Bill will officially become the Autism Act. Under the new law the Government’s forthcoming adult autism strategy will be legally enforceable and must be published within the next six months. New responsibilities the NHS and local authorities will be expected to fulfil will include providing diagnostic services for adults with autism and better training for health and social care staff.

The NAS is also calling for the strategy to tackle the woeful number of people with autism in employment. New research for the charity’s Don’t Write Me Off campaign, launched last week, found that a third of people with autism – that’s over 100,000 – currently live without a job and worryingly without benefits.

The Autism Act was backed by

  • The National Autistic Society,
  • Wirral Autistic Society,
  • Autism Research Centre,
  • TreeHouse,
  • Hampshire Autistic Society,
  • Staffordshire Adults Autistic Society,
  • Research Autism,
  • Autism Anglia,
  • The Wessex Autistic Society,
  • Autism Education Trust,
  • Autism Speaks,
  • Autism West Midlands,
  • Autism in Mind,
  • Autism Initiatives,
  • Sussex Autistic Community Trust
  • Tyne and Wear Autistic Society.

I hope everyone will join with me in congratulating the NAS and their partner organizations and all their supporters who have campaigned and lobbied to make this possible.

Don’t Write Me Off

13 Oct

This is the slogan of the latest campaign from the National Autistic Society. It launched today at a reception in Parliament where over100 MPs heard NAS Council member Thomas Madar talk about his experience as an autistic adult and saw the latest campaign video.

The campaign addresses the lack of support adults with autism face when looking for a job or trying to access benefits. New NAS research has revealed that, of the adults with autism we surveyed:

· One third are currently without a job or access to benefits

· Over half have spent time with neither a job nor access to benefits, some for over ten years

· Just 15% have a full-time job

· 79% of those on Incapacity Benefit want to work

· 82% who have applied for benefits say that they needed support to apply.

As with previous campaigns these statistics will be brought to life with the personal stories of adults and parents directly affected by these issues. For news, resources and to take part in the campaign visit the campaign website

Transition into adulthood – problems for autistics

20 Jun

The recent success of the Autism Bill is in part due to a decade of patient work by the All Party Parliamentary Group on Autism APPGA

is a formal cross-party backbench group of MPs and Peers who share an interest in autism and Asperger syndrome. It was set up in February 2000. Its role is to campaign in Parliament for greater awareness of autism and Asperger syndrome, and to lobby the Government for improved services for people with autism and Asperger syndrome, and their carers.

APPGA has just released an important report on Transition into Adulthood about that awkward period when young people with autism are coming to the end of their education and their parents are trying to obtain a package of suitable services to sustain them into adult life. The APPGA report lends support to the recent finding by the National Audit Office that services for autistic adults are in a parlous state. It should come as no surprise that the inadequacies of adult provision often result in an unsatisfactory transition.

At present all school children with a Statement of special educational need in England and Wales (there are parallel but differing arrangements in Scotland and Northern Ireland) are entitled to an annual review. At 14 years of age this becomes the Transition Review and it is the duty of the local authority to make arrangements for a smooth transition to adult services when the child leaves school. This works well enough for many pupils with severe learning difficulties who often stay at school until they are 19. Their transition to adult services comes at around the same time as they leave home and move to supported living in group homes or other residential settings and maybe employment or further education.

But most children leave school at 16 and adult services do not kick in until they are 18. Many children are left in limbo. Young people with autism, especially those without a Statement frequently lose out. If you have not got a Statement you do not get a transitional review. Even with a Statement things can still go wrong, especially for those in mainstream education. According to APPGA

Frequently, decisions about a young person’s next placement are made only when they are approaching the end of their schooling or, worse still, after they have left school. In the vast majority of cases where transition planning is taking place, it is happening without the involvement of adult social services. Contributors stressed how vital it is to address this. A recurrent theme was the mental health problems which developed, in part, as a result of these failures.

Other significant findings were that

  • Wrong expectations could derail the transition process. Low expectations became a self-fulfilling prophecy for some while unrealistic expectations placed on young people who lacked obvious cognitive impairments set them up to fail.
  • Inter-agency working could be a nightmare, especxially when no one agency took responsibility for leading the process.
  • Professionals lacked the necessary training in autism to inform their contribution to transition planning.
  • Parents and young people did not have adequate information about the available options.
  • Transition was often funding led. i.e it was a bureaucratic measure to allocate the budget and not a tool to identify the needs of young people.
  • APPGA’s recommendations will have no statutory power unless they are included in the statutory guidance that the government is planning to issue later this year. It is important that they make it into the guidance, especially as they independently reiterate many of the recommendations of the National Audit Office. So once more I urge readers in the UK to visit the NAS website and learn how you can contribute to the government consultation on adult services.

    Campaigning by the NAS and its allies is beginning to pay off after years of patient work offering detailed and practical ways forward for government and local councils to meet the challenge of autism. At last they are listening and seem to have the will to do something positive. Make sure you have your say and help to make it count.

    Auditing Autism in the UK

    9 Jun

    The National Audit Office investigates and reports upon the value for money that the British taxpayer gets from our government’s expenditure. They claim to be doing a good job. For every pound the NAO spends it says it saves the government another nine pounds. We will have to take their word for that.

    The NAO have recently turned their attention to autism with a report, “Supporting people with autism through adulthood.” In a welcome move towards inclusion the NAO have produced a video illustrating the themes covered in this report and an easy read version as well. To judge from this report it would appear that the high costs to society associated with autism that are claimed by some researchers do not represent the true cost of autism at all. Lifetime costs running into millions of pounds per person and annual costs to the economy in excess of £28 billion a year are sometimes used to argue for drastic measures for prevention and cure. In the past I have questioned the assumptions behind those calculations. But the NAO starts by accepting those figures and then raises some interesting questions.

    1. How much of the expenditure on services is crisis management for individuals who are not provided with a basic level of support? How much would be saved if more cost effective supports were in place that obviated the need for expensive emergency interventions when things go pear shaped?
    2. How much of the existing support represents money well spent and how much is wasted on ineffective strategies that are followed because there is nothing else available?
    3. How many adults are deemed ineligible for services because the criteria are too narrow and do not take account of the need of those with Asperger syndrome or high functioning autism?

    They identify two key weaknesses at present. There is a lack of data to inform strategic planning for autism specific services at all levels of government. So three quarters of local authorities do not have a specific commissioning strategy for autistic adults. There is a lack of knowledge and understanding of autism amongst frontline workers. Four out of five family doctors want more guidance in order to give a proper service to people with autism. Two hundred out of five hundred disability employment advisors have had no training in autism.

    This last point is crucially important. It is unrealistic to expect autism specific services for every autistic adult. Most people, if they were helped with work and housing, could probably manage quite well most of the time. But when they do need support they should be able to turn to generic services that are autism friendly.

    But autism friendly services do not just happen. They have to be part of the government’s strategy, supported by statutory guidance and resources for training. Autism specific services will also be needed. The NAO estimates that it would cost £40 million to provide specialised health and social care teams across the whole of England. But if these services were used to help people into paid employment and other forms of independent living they would actually save money.

    1. They would only have to reach four percent of autistic adults to break even.
    2. Reaching six percent could save £38 million a year.
    3. Reaching eight percent could save £67 million a year.

    The NAO report is not just about saving money. It is about spending money effectively. They suggest that even a zero cost saving is OK if what is spent actually delivers improvements for service users. But they also point out that savings can be made by making timely and effective provision available. This report is an important tool in our campaign to influence government strategy during the period of public consultation ahead.

    As Mark Lever, NAS chief executive said:

    “In the current economic climate the Government cannot possibly ignore the huge potential cost savings and benefits identified by Parliament’s spending watchdog, of providing adults with autism with the right support at the right time. Neither the Government, people with autism nor the taxpayer are getting value for money from existing autism services and support, leaving those affected by the condition feeling isolated, ignored and often at breaking point. This is simply unacceptable.
    Real savings will only be made if all Government departments work together to address the gaps in understanding and specialist support, enabling people with autism to lead more independent lives. We are, therefore, calling on the Government to ensure the NAOs critically important findings are reflected in the forthcoming adult autism strategy.”

    What I really like about this report is its practical approach. There are no grand schemes, no injunctions to Defeat Autism Now or at least within the next five years. Instead they propose relatively modest changes to the way we plan and organize delivery of key services that take account of the needs of autistic adults. If this report is implemented it should save the government a small amount of money but it will save autistic people from a lot of the unnecessary grief they encounter with the present system.

    A better future for autistic adults

    29 Apr

    Following on from the National Autistic Society’s I Exist campaign and the massive support for the Autism Bill in Parliament the UK Government, after working closely with an external reference group chaired by NAS chief executive, Mark Lever, has launched a

    consultation process for the first government strategy to support adults with autistic spectrum conditions (ASC) to live life as full and equal citizens.

    The consultation documents can be accessed online at the Department of Health. At present the consultation documents are print only but should be available to complete online before the consultation period ends on September 15th. The consultation only applies to England. The Welsh Assembly Government already has a Strategic Action Plan for Autistic Spectrum Disorders (ASD), published in April 2008. An ASD Strategic Action Plan is being finalised for publication in Northern Ireland and in Scotland the ASD Reference Group has published guidance to local agencies on commissioning services for people with autism. While these separate arrangements may reflect local differences it will be interesting to compare them in order to see how adults are being served across the United Kingdom.

    The government has outlined 5 areas of need: social inclusion, health, choice and control, awareness raising and training, and access to training and employment. The NAS has a broader range of concerns on its website which it would like people to consider when completing the government questionnaire.

    So, after years of being ignored or ineligible, autistic adults are finally being considered and their views taken into account in formulating statutory guidance for local authorities. So spread the word and mke sure the government hears your views.