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Call for proposals – announced today

 

Autistica is today launching a call for proposals in association with Autism Research Trust for research on interventions around the time of diagnosis.

From our One in a Hundred report we heard from many individuals on the autism spectrum and families that getting a diagnosis was a real challenge but also there was very little in terms of intervention and support delivered to them during that period. Autistica is looking to fill that gap by encouraging research proposals to support families, who have young children (up to 10yrs old) on the autism spectrum, just before, during and/or immediately after diagnosis.

Please visit the call for proposals page on our website for more information and details of how to apply. Budgets can be up to £150,000 over a two or a three year period.

The first stage is to submit a letter of intent (LOI) by Sunday 2nd August 2015. Communication to applicants as to whether they passed the first stage or not will be made by 10th August 2015 and full applications must be received by 27th September 2015. Final funding decisions will be communicated to applicants by mid-February.

Any questions regarding the call for proposals should be directed to Autistica’s Research Director simon.wallace@autistica.org.uk.

We look forward to hearing from you.

Jon Spiers landscape photo

Message from our new CEO

Dear all,

Today, I officially join Autistica as CEO. I am enormously excited and humbled to become part of this dedicated, passionate and dynamic organisation. It’s clear that so much has already been achieved by Autistica and our research partners in pushing forward our scientific understanding of autism and it is just as clear that a vast amount remains to be done.

We know that research is still a far distant second to support services when it comes to charitable and state investment in autism. We know that, despite an NHS uniquely conducive to research and a highly effective science infrastructure, the UK lags far behind the US in overall spend relative to our size. We know that families and individuals with autism still lack the answers they want and deserve, from how we can diagnose autism earlier to which mental health treatments are most effective and appropriate to how we can better support older people with autism.

There is a quote from US President Barack Obama which has stayed with me ever since I first heard it almost a decade ago: “Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change that we seek.” All of us linked to Autistica – our staff and Trustees, our researchers, our advisers, our donors, our suppliers, our partners, and of course the families and individuals we help – must be the change that we seek in autism.

I know that I have a lot to learn personally: about autism, about Autistica, about leading such a vital organisation. I welcome any advice you may have for me. I also know that we all have a lot to learn as we set out to answer the big questions in autism research, guided of course by the priorities of the autism community in all its forms. I look forward to meeting all of you in due course, understanding your personal views and motivations, sharing my own perspectives and learning from you all.

With very best wishes,

Jon Spiers signature

Jon Spiers, Chief Executive

Author Susan Dunne with her pony, Coco.

A Pony In The Bedroom by Susan Dunne

 

Dunne_Pony-in-the-Bed_978-1-84905-609-0_colourjpg-printReviewed by Marianne Atterbury.

Susan Dunne writes bluntly and courageously about her life lived with Asperger’s: a life of personal trauma, isolation, failed coping strategies and, in the end, a healing process with horses at its core.

Different readers may find different gems in this book, but gems they will find. Liane Holliday Willey, who is also on the autistic spectrum, writes the foreward and says that Dunne’s stories “resonate with me…sometimes as if I was looking at my own past.”

As the mother of an autistic and non-verbal young man, I found most moving the passages where Dunne explains, with astonishing clarity, why she acts as she does in social situations, providing me with an insider’s view of my son’s closed world.

Other readers—horse and dog lovers, for instance—will find the pleasure of a fellow zealot in the eloquent passages about Dunne’s relationship with her dogs, horses and miniature ponies.

Dunne writes briefly about her childhood in urban Lancashire in the 1960s and 1970s, where she first developed a love of horses, but she rarely mentions her family again. The book begins on the day her 18-year-old self boards a train south for university.

“The sliding doors of the train taking me away to university slid shut and, as they did, so did those in my mind creating a see-through barrier on the past. I carried no one inside me – I was too afraid….As the world I had known all my life – that of people and family and places – receded through the train windows, it also receded from my mind in a strange blocking-out process.”

Struggling to fit in at university because of her as-yet undiagnosed autism, Dunne largely retreated into her books, and a new obsession:

“I entered the anorexic world as I entered all obsessions: excluding and mono-focussed, protected from and holding the world at bay. With hunger, came the licence I wanted not to talk, not to smile, to stay away from everyone lest (God forbid) they might lead me into the temptation of eating….I was no longer a social failure because I had no need of society at all. I was safe in my vastly superior, cut-off world,” she writes. She would battle eating disorders for the next 10 years.

After she received her degree, still cut off from her family, she lived through a period of homelessness in London; an abbreviated teaching career in Europe; a stint at a kibbutz in Israel. Some of these passages make for uncomfortable reading: She misread signals from a man in Israel, and thought he really was offering her a cup of coffee when he invited her to his flat. What followed was a sexual assault and, shortly after, a horrific incident of self-harm and the breakdown that led Dunne to return to the UK.

Needing to support herself, Dunne worked at various jobs and fell into work that fit her overriding need to be alone. She ended up working the night shift at a hostel that housed offenders on probation.

“In order to preserve my autistic world from the overload of the everyday world, I frequently had to opt for work that would demand little of me, where for the most part I could be alone, preferably where I would have time to read to fuel my voracious inner life and the space to write,” she writes. “It always came down to a case of survive on a pittance with self intact or aim for something higher and risk annihilation.”

A serious assault by a violent resident, however, left her nursing life-threatening injuries and post-traumatic stress disorder. Several months after the attack–after becoming even more isolated because of the fear overlaying her autism–a chance remark from a doctor led Dunne to reconnect with horses. She sought riding lessons at nearby stables, and gradually found that the horses helped her heal from her trauma, and also made a huge difference in dealing with her autism.

“Above all activities, horse riding forces us to rethink our body, its movements and its effects. The smallest motion of the head, a change of direction of the eyes, a shift in body weight can all lead to a different response from the horse. …I was learning to piece together parts of myself to learn new movements, new responses,” she writes.

Later, when she bought her own horse, Bailey, the lessons continued:

“Bailey taught me about different coping mechanisms and how to think about and be responsive to another sentient being. In the process I had also learned that I was no longer a sole operator…It was no longer possible to retreat into the inner isolation of autism; partnership means doing things together , being responsible for how your actions affect another. I learned about how he was witnessing and experiencing the world as an equine, imagining myself in his place, doing that thing that autistic people find so difficult – putting yourself in someone else’s shoes.“

Dunne eventually bought another horse, and then, two miniature ponies to keep the horses company.

“They had become the family I never felt I had, and if it hadn’t been for the assault, none of this might have happened. It occurred to me that probably once you start looking closely, there are many people in the world who are cut off or have limited options, people who might like to experience some of this magic I now had with horses every day.”

In particular, she noticed people were drawn to the two miniatures, Alfie and Spot. A new career for the ponies, and for Dunne, was launched: She now runs a pony therapy project where she visits care centres with her ponies to share the warmth.

 

Jessica Kingsley Publishers 2015

Autism: Top Ten Research Priorities logo

Let us know your top questions for autism research to answer.

 

Funder logos

A survey has launched today as part of a consultation led by Autistica, bringing together organisations, individuals on the autism spectrum, families and professionals to identify the most important autism research questions to be answered. We are working with a number of partner organisations, including The National Autistic Society, the Autism Alliance and Autism Research Trust.

You will probably have a lot of unanswered questions about autism and a good idea of what knowledge and support would make a difference to your own health and wellbeing, or those that you care for or work with. Let us know where you think research should be directed in the future:

 

GO TO THE SURVEY

 

The survey will take around 5 minutes to complete and is open to individuals in the UK with a personal or professional connection to autism. See the eligibility criteria here.

This is an independent & transparent James Lind Alliance initiative, well-respected by the National Institute for Health Research (NIHR) and other research funders as it is an inclusive consultation giving those who don’t usually direct research the opportunity to agree a list of Top Ten research questions. The goal is to increase funding for autism research and the process has a track record of success, incentivising researchers to respond to the Top 10 questions. For more information go to the Top Ten section of our site.

Please take part in the survey and make yourself heard but also pass it on to anyone else that you know with a connection to autism. We want to receive a good level of responses from the whole community.

To stay updated on the progress of the project and the final Top Ten list that is decided upon, please provide your contact details here.

We look forward to hearing from you and thank you for showing an interest in research priorities.

Christine Swabey photo

Farewell message from Christine Swabey, Chief Executive

 

Dear supporters,

Towards the end of last year, I took the difficult decision to stand down from my role as Chief Executive of Autistica, after nearly five years at the helm. However, I am delighted to learn that the Board has successfully appointed a new Chief Executive, who will be announced  imminently.

It has been an absolute pleasure and privilege to lead Autistica through such an important phase of the charity’s development. In particular, Autistica is now established as a vital bridge between researchers and individuals with autism, as well as their families. Ultimately, it is the power of the collective voice of all those affected by autism that will focus research on the areas of greatest potential for benefit, as well as to secure additional funding for research from government and other major funders. We have truly world class researchers and facilities in the UK and, by working collaboratively and in partnership; together we really can make a difference.

As I head for pastures new, I would like to thank you for everything you have done to make this journey such a rewarding one. I do hope our paths will cross again and indeed we may meet at future Autistica events, although this will be from a new perspective as a supporter!  In the meantime, I would like to wish  my successor all the very best as they take up their new role.

With all best wishes

Christine Swabey
Chief Executive

Optikientics Autistica Corporate Support

[Opti] Aura projectors help fund autism research

Aura Projectors AutisticaIn celebration of World Autism Awareness month, we are delighted to announce our partnership with Optikinetics and their new [Opti] Aura projector. The Aura uses the same lighting effects found in sensory rooms around the world. This multi-effect projector has been designed specifically to give families the opportunity to enjoy the benefits of these amazing projectors in the home .
For every Aura projector sold, Optikinetics will donate 10% of the projector’s profits (a minimum of £2 per product) to Autistica. For more information and to place an order please visit the website.

“My children really love the Aura. It is simple to use and is perfect for playtime.” Becky, Mother of two and Autistica supporter.

 

Jeff Challenge Events Autistica Fundraiser Autism Research

Jeff’s Challenge Events

Jeff Challenge Events Autistica Fundraiser Autism ResearchJeff has supported Autistica for several years, and in a phenomenal number of ways. Jeff has fundraised for us in many running events, including the Bupa 10k, the Cambridge Half Marathon, the Royal Parks Half Marathon, the Rotterdam Marathon, the Paris Marathon, and most recently, the 2015 Manchester Marathon! In total, he has raised over £50,000, which is just incredible. He is already planning to run another marathon for Autistica in 2016, which we are all very excited about!

Jeff says: “My 7 year-old son has autism, and in the less than five years since he was diagnosed, he has made incredible strides. I have no doubt that the (relatively) early diagnosis and the various interventions we have put into place have made a huge difference, and so it is very important to me to invest in research in order to help others know how best to approach things and to help them get a diagnosis as early as possible. I also think this research will further benefit my son and others by helping us understand the condition and giving us more insight into the challenges he faces from his perspective.”

Jeff and his wife, Jo are also members of our One in a Hundred Club, which is dedicated to a vision of a brighter future for families living with autism for generations to come.

Autistica are enormously grateful for Jeff and Jo’s consistently amazing support!

No voice unheard cover image

‘No voice unheard.’ New government proposal launched for those with learning disabilities, autism and mental health conditions.

Care Minister Norman Lamb announced a new report today to attempt to improve the quality of care and outcomes for those with learning difficulties, mental health problems and autism with a focus on giving individuals and families a voice.

Mr Lamb admitted many families felt “their concerns are ignored”.

His proposals, which are being put out to consultation in England only, would strengthen people’s rights to challenge decisions made about their care and will also consider changes to the way the Mental Health Act applies to people with learning disabilities and autism. You can read the full report: ‘No voice unheard, no right ignored – a consultation for people with learning disabilities, autism and mental health conditions’ on the Gov.UK website.

Autistica feels strongly that families and individuals affected by autism should be at the heart of everything that we do, so fully supports this approach. In April, we ourselves are launching a consultation with the whole community about their priorities in research, which you can read more about here.

We bridge the gap between families and research in many other ways as explained in this recent article on the Association of Medical Research Charities page and we will continue to seek other ways in which to involve the whole community in shaping the future of autism.

 

Setting priorities for research – survey launching soon

We are pleased to be embarking on an exciting collaborative James Lind Alliance initiative, led by Autistica in partnership with a coalition of charities and other interested parties, bringing together individuals with autism, carers and clinicians to identify their research priorities in the field of autism.

The independent & transparent process is well-respected by the National Institute for Health Research (NIHR) and other research funders, as it provides an opportunity for the whole community to develop a list of Top 10 research priorities through an inclusive and wide-ranging consultation.

The goal for Autistica is to leverage increased government funding for autism research, in line with our Research Strategy. The process has a track record of success, incentivising researchers to respond to patient priorities and bringing greater cohesion amongst organisations supporting individuals with autism.

We hope that you agree that this is a valuable initiative and encourage you to read more about it  on the new Top 10 Research Priorities  webpage ahead of the survey launch in mid April when we will be asking you for your opinions on research uncertainties.

If you think that you or your organisation could become a ‘partner’ on the project, please read a little more about what this entails here. We already have 13 partners confirmed to support the process and help us circulate the survey amongst their networks.

We will keep all subscribers on our newsletters updated throughout and will circulate the survey as soon as it launches, so if you are not signed up, please do so at the bottom of this page.

NAS Professional Conference 2015 Autism Research Autistica Mike Fitzpatrick Highlights

Highlights from this year’s NAS Professional Conference

The National Autistic Society’s annual ‘professional’ conference has become one of the highlights of the year for the autism community in Britain. This year’s conference brought together more than 600 delegates for two days of lectures, workshops and discussions in the North Yorkshire spa town of Harrogate. It included a glittering awards ceremony and a series of moving tributes to Lorna Wing, campaigning parent, pioneering research scientist and founding member of the National Autistic Society, who died last year.

Uta and Chris Frith: ‘Try acting, dear boy’
When Dustin Hoffman was struggling in rehearsals with the US ‘method school’ approach, Laurence Olivier famously recommended traditional British technique: ‘try acting, dear boy’. This patrician advice came to mind during the keynote lecture on ‘human social ability and what makes it so fragile’ given jointly by Uta and Chris Frith, a distinguished husband and wife partnership with, between them, more than a century of experience of scientific research and clinical practice in the field of autism.

The Friths sought to move beyond the simplistic notion that people with autism lack all social skills to focus on their specific impairments in implicit mentalising, the automatic, unconscious, process through which human beings attribute mental states to others. This capacity develops in complex interaction with the capacity for explicit mentalising, the deliberate, conscious, ways in which we understand and explain why we and others do things.

Their point about the value of drama is that teaching people with autism how to act in different social situations can help them to compensate for deficits in implicit mentalising. But, as Chris Frith emphasised, for this particular task, the technical approach recommended by Olivier is more likely to be effective than Hoffman’s attempts to enter the inner world of his characters.

Steve Silberman: from Geek Syndrome to Neurotribes
It is more than a decade since Steve Silberman coined the term ‘geek syndrome’ to explain the apparent dramatic increase in the prevalence of autism in the Silicon Valley region of California. In a fascinating lecture, Steve took his audience through the exploration of the history of autism that he has recorded in his forthcoming book, Neurotribes: the legacy of autism how to think smarter about people who think differently. He outlined some striking contrasts between the two founding fathers of the field of autism: the Austrian Hans Asperger and the American Leo Kanner. Steve traced the emergence of Asperger’s broad concept of an ‘autistic continuum’ from the humane therapeutic pedagogy of pre-war Europe, and the parallel development of Kanner’s narrower concept of autism in the context of post-war American psychiatry. It is clear that Steve has pursued further some of the areas explored by Adam Feinstein in his 2010 study of the pioneers of autism so we look forward with interest to the publication of his book in Britain later this year.

Tom Stubbs and Michael Smith: Lunchtime with the Dark Fox
One of the unexpected highlights of the conference was a session jointly presented by documentary film-maker Tom Stubbs and creative autistic artist Michael Smith. This was an event about drawing and film-making, about animation and collaboration – and about making a film about a violent demon fox seeking world domination. It was fun, funny, thoughtful and brilliant. Like several of the workshop sessions it deserved a bigger audience.

Lorna Wing: Her Life and Legacy
Professors Sue Leekam and Francesca Happe introduced the final plenary session of the conference with tributes to Lorna Wing and, appropriately, a presentation of some details of the continuing research inspired by her work. The audience included Judith Gould, who collaborated with Lorna for more than 40 years following their landmark Camberwell study that led to the elaboration of the concepts of the ‘autistic spectrum’ and the ‘triad of impairments’. Areas of continuing research include further explorations of the ‘triad’, ‘pathological demand avoidance’ in children, work with girls and women (an often neglected minority in autism) and autism in old age (an even more neglected group).

The audience also included many professionals – and some parents – who have been inspired by Lorna Wing’s diverse contributions to the world of autism. The last words went to film-maker Saskia Baron, daughter of Michael Baron, one of the half dozen parents, including Lorna, who founded the National Autistic Society in 1962:

‘She was truly empathic while being wholly objective, which is a really rare combination in my experience. We need more people like Lorna Wing in the world of autism.’

Dr Mike Fitzpatrick, March 2015