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Research programme launched to address the common co-ocurring mental health difficulties in autism.

E-Newsletter July 2015

 

Introduction

We are proud to launch the Autistica mental health and autism research programme. Our research is always guided by the views of people affected with autism and our One in a Hundred report based on the views of over 1000 families and individuals showed us that mental health in autism was their top priority.

Our new Chief Executive Jon Spiers has been meeting with other organisations from across the autism and medical research community to see how we can work together to change the lives of those with autism and their families.

We continue to collect responses to our James Lind Alliance survey on research priorities and launched a call for proposals for researchers to submit projects aimed at diagnosing autism earlier and supporting families better at the point of diagnosis.

Our most recent annual accounts are now online so you can see what we achieved in 2014 and our plans for the remainder of the year.

Research

Casting Light on Mental Health in Autism

We have now launched our mental health research project, an exciting multi-centre programme of studies with The University of Warwick and the Institute of Psychiatry, Psychology & Neuroscience at King’s College London.

Anxiety and depression are ten times more common in those with autism than in the general population and yet no autism specific treatments have been developed for those experiencing these debilitating problems. If you want to help to fund work in this groundbreaking area, to help us to make a difference within four years, please make a donation today.

We held a launch event at the Royal Society of Medicine where we invited the lead researchers and fellows that we will be funding as well as some supporters and representatives from other autism and mental health charities. At the event, we unveiled a new film to showcase the work, hearing directly from families why it is so important.

You can find out more about the project on our website and our brochure, Casting Light on Mental Health gives more detail on the individual projects that we are funding.

You will have also received an email from our supporter, Mike Fitzpatrick, a GP and parent who explains from a personal perspective the importance of donating towards this work. You can view his message again here.

Top 10 Research Priorities: Survey closing soon

We have had great success with the James Lind Alliance Top 10 Research Priority Setting Partnership survey that we launched in May. The initiative aims to identify the top questions that future research should answer, by asking those affected either personally or professionally.

A range of partners are now involved, from autism specific charities to disability organisations, parent support groups and Royal Colleges representing doctors. This has meant that  response figures have been wide reaching and we are hearing from all target groups – clinicians, parents and carers and importantly individuals on the autism spectrum.

The survey will close on Monday 20 July, so if you haven’t already responded with your top questions for autism research, please do so now, or forward on to anyone that you know who may not have taken part.

We will keep you updated on the next stages, when we begin to sort the data and take votes on the final top 10.

Call for proposals on intervention at diagnosis

We have just launched this call and invite any researchers to submit a letter of intent if they feel that this is an area in which they want to work. This call is in partnership with the Autism Research Trust. You can find out more information on the funding pages of our website.

 

 

 

 

Staff

New Research Director to join Autistica

We are pleased to announce that James Cusack join Autistica as our new Research Director in September.

James will be moving from the University of Aberdeen where he has gained broad experience working within the field of autism, holding specific expertise in autism research.

In recent years James has sat on a number of advisory panels discussing the role of research in autism and he was vocal in campaigning for Scotland’s first ever autism strategy. James has also been a member of Autistica’s own Science Review Panel since January 2014.

From a young age James has worked directly with families affected by autism, as well as having experience in clinical, educational and social care settings.

Read more about James’ background and motivations for joining Autistica here.

There will be a period of overlap between James’ appointment and our existing research lead’s departure to ensure that the transition is smooth and existing working relationships can be sustained.

We would like to take this opportunity to thank Simon Wallace for his exceptional leadership as Research Director throughout his time at Autistica and wish him all the best in his move overseas.

Fundraising Events

Abseil for Autism

Do you have a head for heights? Autistica’s Abseil for Autism will take place on Friday 25th September 2015 at the ArcelorMittal Orbit, Queen Elizabeth Olympic Park, and we’d love you to join us and our new CEO, who will be braving the drop. The descent distance is just over 260 feet, making it the highest freefall abseil in the UK!

The event will last between 1-2 hours – this includes your arrival at the Orbit, undergoing a safety briefing and taking part in the free fall abseil. This makes it the perfect opportunity to slip away from your desk for an extended lunch break if you work close by or take a Friday afternoon off to do something amazing for autism.

To secure your place, you can sign up super quickly and easily here. For more information, please do get in touch with the Autistica team on 05601 183 601 or email friends@autistica.org.uk

Royal Parks Half Marathon

Join the Autistica team at London’s premier half marathon for our most popular run of the year!

The Royal Parks Foundation Half Marathon is an incredible challenge at just over 13 miles, with Hyde Park providing the spectacular backdrop. Thousands of supporters turn out for this beautiful run through St. James’s Park, Green Park and Kensington Gardens and the Autistica cheering team will be there in full force to support and encourage our runners to keep those legs moving for a fantastic cause.

The deadline to sign up is Friday 21st August so if you’re interested, please do get in touch with the team via email friends@autistica.org.uk or call 05601 183 608.

Alternatively, you can sign up straight away on our website. We’d love you to join us for this amazing event to raise much-needed funds for autism research.

Supporters

Fundraisers

Big thanks to our runners who took part in the British 10K last Sunday and fundraised an impressive amount for Autistica. The team had fun cheering them on to the finish.

For other upcoming runs and challenges see our calendar on the website.

Sensory projector sales giving to Autistica

We thank technology company Optikinetics and their unique [Opti] Aura projector for their continued support.

Their multi-effect projector has been designed specifically to give families the opportunity to enjoy the benefits of sensory rooms in their own homes and for every Aura projector sold, Optikinetics continue to donate a minimum of £2 to Autistica. For more information or to place an order please visit the Opti Aura website.

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

Trusts & Foundations

We are grateful to have had recent pledges of support from The Swire Charitable Trust (£5,000) and the Sylvia Waddilove Foundation UK (£10,000).

Donate
Autistica is the UK’s leading autism research charity. The organisation funds and campaigns for medical research to understand the causes of autism, improve diagnosis, and develop new treatments and interventions, acting as the bridge between people with autism and researchers. Since being founded in 2004, Autistica has raised over £8.5 million in support of autism research. 

 

 

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James Cusack photo

New Research Director to join Autistica

James Cusack will be joining Autistica, in September, as the new Research Director.

James will be joining the charity from the University of Aberdeen where he has gained broad experience working within the field of autism, holding specific expertise in autism research.

He undertook a PhD at the University of Aberdeen where he studied how people with autism detect the actions of others.  In his post-doctoral studies he led the development of an automated measure of facial imitation which is being used in the study of autism, mood disorders and schizophrenia.

James has sat on a number of advisory panels discussing the role of research in autism, and was vocal in the production of the report A future made together and the publication regarding Educational provision and outcomes for people on the autism spectrum. He was part of a core stakeholder group which successfully campaigned for Scotland’s first ever autism strategy. He has also been a member of Autistica’s own Science Review Panel since January 2014.

From a young age James has also worked directly with families affected by autism, as well as having experience in clinical, educational and social care settings.

He said: “I am delighted to be joining the team at Autistica at such an exciting time for the charity and autism research.  Autistica’s outstanding community-driven research strategy gives us the perfect framework to support world-class research which can improve our understanding of autism and improve the lives of those affected by autism.  I look forward to meeting the scientists, supporters and families affected by autism who are involved with Autistica over the coming months.”

There will be a period of overlap between James’ appointment and our existing Research lead Simon Wallace’s departure to ensure that the transition is as smooth as possible and that existing relationships can be continued.

We would like to take this opportunity to thank Simon Wallace for his exceptional leadership throughout his time at Autistica and wish him all the best in his move overseas.

Mike and James Mental Health Autism Autistica Research

My son, James

I want to tell you about my son, James. He’s 23, has autism and a severe learning disability. Like many young people with autism, he has experienced particular difficulties in making the transition from the structured environment of school to the unpredictable, perplexing world of ‘the community’. As a result, he has become increasingly anxious, withdrawn and inclined towards episodes of challenging behaviour, including self-injury and aggression.

His story is distressing but all too familiar for so many of us.

We know that 70% of people with autism suffer from mental health conditions. These can have a huge impact on an individual’s ability to sustain a job, social and family relationships and a good quality of life.

Having been a GP for over 30 years I know that it can be difficult to recognise mental health problems in people with autism and that such problems are often missed or mistakenly diagnosed. I also know, both as a parent and as a doctor, that current mental health treatments aren’t always appropriate or effective.

That’s why I was delighted to chair Monday evening’s launch of Autistica’s latest research project focusing on mental health in autism. We hope that, through funding high quality research in this virtually untouched area of science, we can make a real difference to the lives of people with autism and their families in a very short period of time.

Mike and James Autistica Research Mental Health Autism

The Autistica programme involves leading researchers at the Institute of Psychiatry, Psychology and Neuroscience in London and at the University of Warwick. The research aims to investigate the mental health conditions most commonly associated with autism, such as depession and anxiety, and produce practical outcomes and autism specific treatments within four years. You can watch Autistica’s short film ‘Casting light on mental health in autism’ produced for the project and learn more about the specific research projects here.

If people like my son get the right treatment and support, they can thrive and live a more independent and fulfilled life in the community. This is why I believe that research like Autistica’s can make a huge difference to the 700,000 families living with autism in the UK today.

I hope you will join me in supporting this genuinely transformative project. Autistica receives no government funding and relies entirely on the generous support of their donors to carry out this groundbreaking research. By giving £20 a month, you can help researchers work with families like mine across the UK to find new and better ways to live with autism and mental health difficulties. Please click here to make a one-off gift or to set up a regular donation.

Thank you,

Mike

Picture of female researcher looking through microscope

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!