Home > News

Autistica Blog

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

Getting down to work already, nearly all unpacked.

New Home!

At Autistica we are incredibly lucky to have some very generous corporate partners who make pro-bono gifts of services and materials in order to enable our work to have a bigger impact. One of these such companies is Anglo Scottish Properties, our neighbours at Chalk Farm who have housed us free of charge since April 2012.

Our lease was due to be terminated this month, but they have kindly agreed to re-house us for another year in one of their other properties in central London whilst we make arrangements for somewhere long term.

This continued support of the charity from Richard and Philippa Mintz is so valuable to us and means that all charitable donations that we receive can feed directly into funding ground breaking research, with every penny being used to achieve our aim of securing a brighter future for those with autism and their families. This is a fantastic way to demonstrate to our supporters how efficient and cost-effective we are when using their donations. We want to take this opportunity to thank Anglo Scottish Properties for their incredible generosity and say that we will miss having them as neighbours. We wish them all the best in their new abode.

As of 27 February our new home will be:

26 Mortimer Street
London
W1W 7RB.

All email addresses and phone numbers remain unchanged.

We are keen to find permanent premises as continuity is important for us, so we will be seeking this over the next 12 months.

James Cusack

Study led by autistic scientist challenges preconceptions about communication skills of those with ASD

A scientist with autism has used his own experiences to aid the completion of a study which challenges some of the most commonly-held beliefs about the condition.

Dr James Cusack, from the University of Aberdeen, argues that generalisations about people with autism being poorer at interpreting gestures and body language may be exaggerated, and could be overcome by developing their ability to pay attention to signals in their brain which may otherwise go unnoticed.

The findings, published in the prestigious Journal of Neuroscience, are the result of a four-year study conducted with a group of adolescents with autism from Aberdeen, and it is hoped the results could bring scientists closer to understanding the condition and unlock the potential of others with the disability.

Those taking part in the study were shown a series of human action sequences, created using technology which reduces figures to a series of dots, and then asked to distinguish between similar actions such as dancing and fighting – something which it is commonly believed those with autism have greater difficulty in determining.

The results showed that their ability to detect these subtle differences was significantly higher than that identified by previous research.

The findings parallel developments within Dr Cusack’s own life by demonstrating that the impairment in those with autism could potentially be overcome if they could be directed to interpret what they see more effectively.

Dr Cusack was told at the age of 12 that he may need residential care for the rest of his life to support his individual needs. Instead, thanks to the targeted education he received at the specialist autism unit within Dyce Academy, Aberdeen, he went on to excel first at school and then at university, gaining a doctorate in biomedical sciences and becoming a research fellow at the University of Aberdeen.

Dr Cusack said: “There are several theories that rely on this notion, but most of these theories are based on very little data so we wanted to test this concept more thoroughly.  My own diagnosis and experiences aided the design of powerful tests that could more accurately control for factors not directly linked to autism – such as ensuring test requirements were fully understood and that experiments were conducted in an appropriate environment.

“When we take account of these other factors properly, the results showed only a slight impairment and this was more of a generalised deficit which might instead be attributed to factors such as the ability to pay attention, rather than autism specifically.”

Dr Cusack’s doctoral project was jointly supervised by Dr Peter Neri, a leading visual scientist from the University of Aberdeen, and Dr Justin Williams, a psychiatrist who pioneered influential theories of autism, also based at the University. The researchers were supported by the Medical Research Council and the Royal Society.

Autism is generally associated with poor communication and social skills, which were thought possibly to stem from a difficulty with interpreting other people’s gestures and body language. There are several theories that rely on this notion, but most of these theories are based on very little data so we wanted to test this concept more thoroughly.” Dr James Cusack

Dr Neri said that the results of these experiments clearly demonstrate that problems with the perception of action by those with autism occur not at the stage of identifying movement, but in interpreting it effectively.

He added: “We had expected to see impairments of the sensory system – the first part of the brain that determines the action they see when shown the human motion simulations, for example confusion between similar actions such as dancing or fighting, as many previous studies have proposed.

“But what we found is that this region of the brain functions perfectly. Instead, difficulties seem to arise at a later stage of cognition in a different brain system, which informs what we should do in response to an action, often termed the ‘executive function’.

“Although we do not know exactly what happens here, by identifying that this is where the impairment occurs is extremely significant.

“The sensory parts of the brain are extremely complex and largely resistant to modification after the first few years of early life, so that any impairment here would be very difficult to counter. It is well known, however, that the executive functions of the brain can be can be ‘trained’ to make use of these sensory inputs more effectively, for example in the way that an artist would see colours.

“We believe that autistic individuals may not be able to pay proper attention to the signals, but the signals themselves are intact.”

Dr Justin Williams further explained: “Many people with autism are disabled by sensory symptoms. It is important to know that the brain’s sensory systems are functioning well in autism. This suggests that we need to focus upon the way that the brain modulates the way that sensory input is experienced”.

Dr Cusack said: “When I began secondary school it was expected that I would not sit any exams. I went on to attend the University of Aberdeen where I obtained a psychology degree and PhD, met my wife who is training to be a GP, and have a baby daughter. I couldn’t have imagined I’d achieve any of this when given my diagnosis aged 12.

“I will now be taking these findings forward as more research is needed to fully understand exactly where the deficit lies at the level of executive function, which brain circuits are affected, and what interventions can be taken in order to restore function within those circuits.”

Christine Swabey, Chief Executive of Autistica said: “Having a study led by an individual on the spectrum is an extremely valuable approach, especially as it challenges much of what we have previously believed about social communication and autism.”

 

The full academic paper is available to view online here (subscription required).