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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
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).

PHD opportunity in mental health and ASD


Are you interested in undertaking a PhD on the mental health of children with autism and intellectual disability?

This exciting new project is a collaboration between Autistica and  researchers at the University of Warwick. It is funded by an ESRC CASE Collaborative Studentship. For more information see below or visit: http://www.jobs.ac.uk/job/AKO428/esrc-dtc-collaborative-studentship-mental-health-of-children-with-autism-and-intellectual-disability/


ESRC DTC Collaborative Studentship: Mental health of children with autism and intellectual disability with the University of Warwick and Autistica

University of Warwick: Doctoral Studentships in the Social Sciences
The ESRC Doctoral Training Centre at the University of Warwick, one of 21 such centres in the UK, embodies the university’s commitment to producing the next generation of leaders in social science research.  Internationally renowned for its research excellence, Warwick is now inviting applications for an ESRC Doctoral Studentship in association with Autistica to commence in October 2015.

The academic department to host the PhD is the Centre for Educational Development, Appraisal and Research (CEDAR; http://www2.warwick.ac.uk/fac/soc/cedar/). Autistica will be their partner on the project. The PhD student will work collaboratively with both organisations throughout the duration of the award.

PhD content
The PhD will focus on the mental health of children with an autism spectrum disorder and co-occurring intellectual disability. The project offers a unique opportunity to conduct high-quality research, acquire experience of a range of quantitative methodologies and benefit from a personal development programme for research career development and training in autism research advocacy.

The PhD will focus on prevalence, associates and risk factors, and intervention. The PhD student will conduct a research synthesis of prevalence estimates for mental health problems in children and adolescents with autism and intellectual disability. In a series of secondary analyses of large-scale data, the PhD student will conduct longitudinal analyses to examine (a) developmental pathways for mental health problems in childhood, (b) the potential to identify risk markers in early life. UK and Australian data will be used. Finally, the PhD student will have the opportunity to evaluate, using mostly quantitative methods, an online intervention currently developed to address anxiety in this group of children and adolescents.

The project will be supervised by Dr Vaso Totsika (CEDAR), Professor Richard Hastings (CEDAR), and Dr Simon Wallace (Autistica). Part of the PhD will also be co-supervised by colleagues in Monash University, Australia, and opportunities for overseas visits can be pursued.

Application Process
To be considered for this PhD, you will need to apply to the University of Warwick and indicate that you would like to be considered for this project. For details on how to apply please see http://www2.warwick.ac.uk/study/postgraduate/apply/howto/.

Once in the relevant portal you should select ‘CEDAR’ as the Course Department, ‘Research’ for the Course Type and ‘Education and Psychology (Full Time)’ for the Course. Under the section Finance: How would you finance yourself at Warwick? Please select ‘Studentship’ and under Name of Award Applied For please quote: ‘ESRC DTC Collaborative Studentship: Mental health of children with autism and intellectual disability’


Application deadline: Thursday 26 March 2015

Interviews: Thursday 16 April 2015


ESRC DTC Warwick
Our ESRC studentships cover fees and maintenance stipend and extensive support for research training, as well as research activity support grants. For 2015/16, RCUK maintenance stipends are set at £14,057. These are available only to successful applicants who fulfil eligibility criteria. To check your eligibility, visit: http://www.esrc.ac.uk/funding-and-guidance/postgraduates/prospective-students/eligibility/

Informal enquiries about the research or CEDAR prior to application can be directed to V.Totsika@warwick.ac.uk

Top Autism Films and Books

By Jude Ragan, Head at Queensmill School and Autistica Trustee.

The Autistica team recently came on an autism course that I run at my school, Queensmill, which is a specialist school for children who are considerably affected by complex autism.  I give out a booklist on this course, of all of the books on autism I have read, and a short synopsis of each, as a result they asked me to give you my top ten, and a short explanation of why.

This task has been a joy.  Autism books fall largely into three categories: academic, then those written by people with autism about their experiences or finally those written by parents of people with autism about their child.  My top ten contains all. Many of them are surprisingly old, and it has been wonderful to read them all again to ensure that they really do deserve to retain their place, despite the hundred of books I have read since.


1. ‘The Siege: A family’s journey into the world of an autistic child.’ by Clara Clairborne-Park, Back Bay Books, Little, Brown and Company, pub 1967, 1972, 1982

A university professor of English during her working life, naturally Clare writes beautifully.  Her daughter with autism, Jessy, was her fourth, and despite this being in the US in the 1960s, when Bettleheim’s erroneous and damaging theories of autism being caused by cold mothering were still very prevalent, Clara was convinced differently.  She could immediately see that Jessy was quite different from her three previous children, and yet the parenting was the same.  Little written about autism in the 60s, Clara worked it all out by observing her daughter, and the ways she found to “besiege” her daughter’s remoteness could easily still be a blueprint for raising and educating a child with autism.  Sadly, this book is no longer in print, but I buy second-hand copies regularly on amazon.  I suggest each one of you who reads this review emails to the publisher to ask them to re-publish this very important work:  info@littlebrown.co.uk


2. ‘Exiting Nirvana: A daughter’s life with autism, by Clara Claireborne-Park. Aurum Press pub, 2001.

A very satisfying sequel.  Clara reports that in adulthood, Jessy is happy.  “I can’t think of another woman in her forties who is more content with who she is, less likely to questions how she lives or what she does.”  Jessy’s determination to stay in her own private world was besieged by her mother’s determination and carefully observed and planned interventions to allow her daughter to exit her own private Nirvana.  As an adult Jessy has grown into an accomplished artist and is an active member of her local community with a life that interests and fulfills her.

Similarly out of print, similarly Queensmill School is steadily buying up all available second hand copies on amazon, similarly, please email the publishers to ask them to go again:  editorial@aurumpress.co.uk


3. ‘Autism: Explaining the Enigma’,  second edition, by Uta Frith. Blackwell pubs, 2003

Uta is one of my personal heroines of autism, her writing being deeply academic and yet easily accessible to those of us who have not had her history as Professor in Cognitive Development.  She notes in her introduction to the updated second edition that it is generally now accepted that autism is a life-long condition and that it is inappropriate to search for a cure, mentioning her awareness that this point of view might well be regarded as politically incorrect.   Her chapters describing what autism is, whether or not there is an epidemic, and then on all the component parts of autism are erudite, draw upon her many years of work in this field, and are always written fondly and with huge respect for people with autism.  I treasure this book.  I teach a post-graduate course in autism at Queensmill, and this edition is always central to our reading list.


4. ‘MMR and Autism: what parents need to know,’ by Mike Fitzpatrick. Routledge pub 2004, re-printed 2005

Mike has been a fellow Trustee on the Autistica board, and is still actively involved with our charity.  He recently retired from a life’s work as a GP in Hackney.  He is the parent of a young man with complex autism.  His work is therefore a mixture of the two, professional and academically referenced, and yet always rooted in what he feels parents need to know.  This is a reasoned and factually reference debate about the MMR controversy that has lead to so many parents choosing not to have their children vaccinated.  The scientific evidence, much of it in response to this scare, showing that the weight of scientific evidence is overwhelmingly in favour of the vaccine, and overwhelmingly of the view that it is not, except possibly in the very rarest of circumstances, linked to the cause of autism.  Mike discusses this, and many other treatments that have been used with children with autism, and gives us the scientific and statistical information we need to have to reject them.


5. ‘Defeating Autism: A damaging delusion,’ by Mike Fitzpatrick. Routledge pub, 2008

Again, Mike writes clearly and passionately about those things that we hear about autism, that are put out there on the internet, that are scientifically entirely unproven.  Myths about ‘cure’ and ‘recovery’ are damaging, and often divert parents away from understanding the reality of their child’s needs.  “Campaigns that channel parents’ energies into the pursuit of wonder cures, or into futile confrontations with doctors, scientists and other professionals, or into litigations over vaccines, offer illusory hopes – and targets for blame  and recrimination.  At best they divert and dissipate already over-stretched parental energies; at worst they encourage an enduring rage that is likely to compound family difficulties, to intensify isolation and lead ultimately to demoralization.”


6. ‘The reason I jump: one boy’s voice from the silence of autism,’ by Naoki Higashida. Sceptre pubs, 2013

A fabulous little book of a mere 175 small pages, and yet giving us all we need to know about behaviours that are often caused by the core symptoms of autism.  I can certainly do no better than quoting the young autistic author’s afterword:  “What am I going to be if my autism is never to be cured?  When I was little, this question was always a big, big worry.  I used to be afraid that as long as I was autistic, I’d never be able to live properly as a human being.  There were so many things I couldn’t do like other people, and having to apologize day in, day out totally drained me of hope.   I hope that by reading my explanation about autism and its mysteries, you can come to understand that all the obstacles that present themselves don’t come from our selfishness or ego.  If all of you can grasp the truth about us, we are handed a ray of hope.  However hard an autistic life is, however sad it can be, so long as there’s hope we can stick at it.  And when the light of hope shines on all this world, then our future will be connected with your future.  That’s what I want, above all.”

In my view this should be compulsory reading for every teacher in Britain, for every health professional, for all those working in social service, police personnel . . . . . . . .


7. ‘A Martian in the playground: Understanding the schoolchild with Asperger’s Syndrome’ (Revised Edition), by Clare Sainsbury. Lucky Duck pubs revised edition 2009

Another very short and yet so illuminating book written by a young woman with autism about her school days.  Another one I feel should be compulsory reading for all teachers, all school staff in Britain.  Clare writes clearly about all of the difficulties she encountered at school, prior to her diagnosis, and those things that school did for her that helped, and notably those things that did not.  She brings the difficulties experience by high functioning people on the spectrum to light, such as:  “Because we mostly have apparently ‘normal language’, our communication difficulties are more subtle than the obvious ones of a person who does not speak.  Instead, our difficulties often involve the aspects of language which go beyond literal meaning, such as recognizing sarcasm or metaphorical use of language.  It is a cliché, but a true one, that a child with Asperger’s asked: ‘Do you know what 6 times 7 is?’ is quite likely to answer simply ‘yes’ without realizing that this was not a factual enquiry but an instruction meaning ‘tell me what 6 times 7 is’.”


8. ‘Thinking in Pictures’ by Temple Grandin

 No initial book list in the field of autism is complete without Temple’s clear description about her own autism, and how other young people and adults with autism should be treated.   She described how autism has affected here and from this we learn so much through listening to her, a very highly achieving professional woman who is an animal behaviourist and has a successful career designing humane abattoirs in the States.   She is also, through years of working with others with autism and those who try to meet their needs, has a remarkable understanding of the whole spectrum  and how strategists might better plan services for them.


9.  ‘George and Sam’ by Charlotte Moore. Penguin Books pubs, 2004

Like Clara Clairborne-Park, Charlotte was an English teacher before becoming a mum, and writes beautifully.  There are so many remarkable things about this book, not least her pragmatic, un-dramatic, at times very funny account of her chaotic life with three boys, two of whom are autistic.  The thing I most notably took from it when I first read it is how differently autism has effected her two sons, and  how very differently they present.  We remind ourselves of this constantly at Queensmill, that the only thing our 140+ pupils have in common is their diagnosis of autism, but how it affects them, and how they present their needs and wants, their senses of humour, their delights and their horrors, is always individual to each child, and as educators we need to always remember that.  Interestingly, Charlotte is enough of a fan of Applied Behavioural Analysis (ABA) to have incorporated it into the lives of both boys with success, whilst sending them to special schools that were not ABA lead.  Those of you who know our practice at Queensmill will know that although we are not a rigidly practicing ABA school, we use the components of the program as central to our practice but within a sociable context for some of the time, believing  that this makes the learning is more meaningful and generalizable for children with autism.   I suspect that this was not the case in the practice of the generic special school with attached autism classes that George and Sam attended, where they were welcomed and by all accounts settled and productive.


10. ‘Autism Spectrum Disorders’ edited by David G Amaral, Geraldine Dawson, Daniel H Geschwind. Oxford University Press 2011

A vast academic tome of 1390 pages weighing in at over 3 kilos!  (As a back pain sufferer these things are important to me.) This book gathers together in one place 81 recent papers about autism, in headings of: 1. Historical perspective, diagnosis, classification and epidemiology, 2. Core features and developmental trajectories,  3.  Psychiatric and medical co-morbidities, 4.  Broader autism phenotype, Neurobiology, 6. Etiology:  Genetics,     7.  Etiology:  Environmental Factors, Animal models and theoretical perspectives, 9.  Treatment approaches, Best practices in the diagnosis and treatment of autism.

It therefore is the everything-you-need-to-know-about-autism according to current, peer-reviewed scientific understanding and practice.  It also serves to show what amazing academic practitioners we have in Britain working in this field, and how important their work is to those of us who work with children and young people with autism.


And if I could just sneak in a couple of films, they would be:


1. The Autism Puzzle Saskia Barron (https://vimeo.com/20748434)

Saskia made this wonderful film in 2002/3 for the BBC. She narrates it too. It is about her brother Tim, who received his diagnosis in the 1960s, and whom she describes as profoundly autistic with additional learning difficulties.  Saskia and Tim’s father, Michael was one of the founder members of the National Autistic Society, and is an important voice in the film, as are Prof. Tony Bailey, talking about his research into brain mapping. Prof Ami Klin, is filmed talking about his work in tracking eye gaze and his conclusion that many people with autism track the mouth of the person currently speaking, thereby being distracted from watching and taking in the whole social scene, as well as Charlotte Moore, author of ‘George and Sam’ (No. 9 above).  This film for me is still the best at explaining and showing autism and its complexities.  It has an early film clip of Kanner, the original describer of the condition, telling us that the two factors of autism are a preference for extreme aloneness, and the strong desire for the preservation of sameness.  Whilst researchers and practitioners have filled in far more details between now and then, these factors remain the same in profound autism.  Both Kanner, and Sybil Elgar who set up ‘Somerset Court’ the first school in the world to be set up entirely for children with autism, told us that the only treatment for autism is education, and whilst the education now available for children with autism is now more prevalent and scientific, this remains the case.


2. Make Me Normal, Channel 4, 2005. Jon Smith and Zac Beatty, then at Century Films, now at GardenHouse Films. (Available on YouTube)

 This film was made in my previous school, Spa School in Bermondsey.  Two brilliant film-makers, Jon and Zac spent months in the school, and became real experts in autism.  They chose to tell the film through the voices of 4 young people with Asperger’s Syndrome, who were able to describe their experiences through the process of Jon’s delicate and perceptive questioning.  It is both heartbreaking and lovely.  It shows Moneer at the most difficult period in his life, during which his mother died.   He invited me recently to go and see a Chicken Shed performance in which he works as a volunteer to help the children involved in the show.   It was an absolute delight to see the remarkable and wonderful young man he has become.  Make me Normal won the BAFTA for the best documentary of the year in 2005.


 3. A is for Autism, Tim Webb, 1992. Again, now available to watch on YouTube.

This intriguing and beguiling little animated documentary lasts exactly 11 minutes.  We know it does, because the narrator, a young man with autism, tells us so at the very outset.  It draws cartoons that illustrate how people with autism feel – Temple Grandin’s voice (No.  8 above) is in there too.  What is remarkable is that so much of it lets us know of the sensory sensitivities, mis-conceptions and fears experienced by people on the spectrum, and in 1992 there was not a great deal of credence paid to sensory issues as there is now.


I hope this has inspired you to read and watch more about autism.  As Naoki Higashida, a young man with autism, wrote in his book (No. 6 above):  “If you can grasp the truth about us, we are handed a ray of hope.”


Jude Ragan, February 2015.

Eye movements babies at risk of autism BBC Autistica article

Babies with frequent eye movements linked to autism

A recent study funded by Autistica suggests that frequent eye movements in babies could be a clue to whether they will go on to be diagnosed with autism as children. These findings add to the growing evidence about very early brain and behavioural differences that indicate whether an infant is at elevated risk for autism.

Parents frequently tell health practitioners that they knew there was something different about their child’s development quite early on, often long before an official diagnosis is received. This can often be the child’s eye contact and visual attention.

The British Autism Study of Infant Siblings (BASIS) research, carried out at Birkbeck, University of London, found that while most babies moved their eyes about twice a second, babies who were later diagnosed with an autism spectrum disorder tended to move their eyes more often – about three times a second.

The babies with more frequent eye movements were scanning the image more rapidly than the others.Babies who were at higher risk of autism in the study also showed little variation in their frequent eye movements compared with the low-risk group.

To read the full BBC article, click here.

iBASIS autism video-based therapy babies research

Video-based therapy shown to be effective in babies at risk of autism

A study published today and funded by Autistica has used video-based therapy for families with babies at risk of autism and shown improvements in infants’ engagement, attention and social behaviour.

Previous research has found that the earliest indicators of autism such as a lack of attention to a parent, reduced social interest or engagement, and decreased eye contact, may be present as early as a child’s first year of life, but until now no treatment trials have assessed the possibility of providing support for these early differences with the aim of improving the longer term development of the child.

Method & aims
In this study, a specially adapted Video Interaction for Promoting Positive Parenting Programme (iBASIS-VIPP) was delivered over 5 months to infants aged 7 to 10 months, who had a higher chance of developing autism because they had an older sibling diagnosed with the condition. The aim of the programme was to reduce the full onset of symptoms prior to diagnosis, by optimising the babies’ social and communication skills during the first year of their life.

After 5 months of the intervention, families who received video therapy showed improvements in infant engagement, attention and social behaviour. For example, in the group that received the intervention there was a reduction in behaviours associated with an autism diagnosis, which was not seen in the group who received no intervention. There were also changes in parents’ behaviour, such as being less directive in their interactions whilst increasing their infants’ attentiveness. The results were not universally clear, however, and there was a possibility of nil or negative effects on language and communications skills, which obviously needs further research.

Simon Wallace, Research Director at Autistica says, “This project is an important step towards gaining a better understanding of how interventions for the very early signs of autism in “at-risk” groups can be used to support the development of social and communication skills. Autistica is responding to people with autism and parents who believe that early intervention is key. It is important that research continues on a larger scale to test approaches like iBASIS-VIPP in partnership with families, before they are delivered in clinics and homes.”

For a summary of the findings, read Autistica’s press release here: iBASIS video based therapy for autism

The full article published in the Lancet Psychiatry journal can be seen here: http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(14)00091-1/abstract

BASIS research with baby 10 Scientific Highlights Autistica Autism Research 2014

Autistica’s Scientific Highlights

Autistica Research Strategy 2015-2020 front cover2014 has been an incredible year for Autistica. Not only did it mark our 10th birthday, but in June we launched our Ageing with Autism Programme at Newcastle University and just last month we published our new Research Strategy 2015-2020.

Looking back at autism research over the past ten years since our founding, there have been significant advances in our understanding of autism and Autistica has been at the heart of funding projects, young scientists and the UK research infrastructure. In total we have funded in excess of £4m in autism research projects and initiatives which have led to important findings being published and leveraged greater investments from large institutional funders. Research takes time for findings to reach individuals with autism, families and professionals, but as we move into the next phase of our Research Strategy, Autistica will also promote and fund more applied research and deliver information and resources which will help individuals and families now.

We have pinpointed ten highlights achieved by our researchers over the past ten years and would like to say a huge thank you to all of the researchers and supporters who have made these projects such a success.

  1. In 2006 we funded Professor Anthony Monaco at the University of Oxford who was an investigator on the Autism Genome Project. This is one of the largest international efforts to understand small differences in the genetic architecture that underlie some cases of autism.
  2. In 2008, with partners, we funded the Welsh Autism Research Centre at the University of Cardiff. Professor Sue Leekam is the head of the centre, which is increasing research capacity in Wales, as well as engaging individuals, families and professionals in research and sharing findings.
  3. In 2009 we funded the Brain Bank for Autism at the University of Oxford. This initiative was established to store the brains of individuals with autism who have died and then carefully distribute sections of them for use in research. The Brain Bank has now formed a partnership with a larger bank in the US so that this precious resource can grow and inform our understanding of autism.
  4. Also in 2009, Autistica funded Professor Declan Murphy at Kings College, London to investigate how genetic differences may affect the brain chemistry of people with autism. They identified important differences in brain chemicals like GABA that helped them lead a European-wide autism research grant for almost £30m.
  5. In 2010 we announced the funding of four research projects that came out of our first competitive call for proposals. By holding this open competition for the research community we also successfully applied for membership of the Association of Medical Research Charities, a kite mark of excellence in research funding.
  6. In 2011 we funded with partners a research study of one of the earliest interventions for autism in the world called iBASIS, led by Professor Jonathan Green at Manchester University. This project assessed the impact of professional guidance given to parents in the way they communicated with their infant child at risk for developing autism. The project team published initial positive findings in 2013 and we will hear the full findings in early 2015.
  7. In 2012 the British Autism Study of Infant Siblings (BASIS) research funded by Autistica and led by Professor Mark Johnson, was published.  The team identified differences at 10 months of age in the brains of infants who go on to have an autism diagnosis when they look at faces. These important markers of difference may help with earlier identification of autism and better diagnosis. The findings were featured on the BBC News as well as other mainstream media. 
  8.  In 2013, Autistica published our One in a Hundred Report based on the findings from a consultation with individuals on the autism spectrum and parents. We consulted on experiences with the health service as well as priorities for research and this formed the core of our future research strategy. We were delighted that our publication was shortlisted as ‘Best Print Publication’ at the Association of Medical Research Charities Communication Awards.
  9. In 2013 we saw the thousandth family recruited to the Autism Spectrum Database-UK project led by Dr Jeremy Parr at Newcastle University. We funded this project to make it easier for individuals and families to be recruited into research and for them to hear about research findings.
  10. This year we launched our programmes of research in adults and ageing at Newcastle University and of mental health at Kings College, London. These will form two key themes in our Research Strategy 2015-2020, which will also include researching interventions to be delivered in the period after diagnosis.

AMRC Autistica Scientific Highlights UK Brain Bank for Autism Autistica Scientific HighlightsASD-UK Autistica Scientific Highlights

Wales Autism Research Centre Autistica Scientific Highlights







Amman's Christmas Letter Give a Gift Autistica

Amman’s Christmas Letter

Amman and her brother Arvind after the raceThe Autistica team want to say a huge thank you to one of our incredible supporters, Amman, who ran the British 10k this year and raised an amazing £1,700. In the run up to Christmas, Amman discusses her personal connection with autism and why she feels it is so important to support autism research.

Dear Friend of Autistica,

I am writing to ask for your support.

I first came into contact with Autistica because my brother Arvind was diagnosed with autism in 2009. At the time I had no idea what autism was and quite frankly most people I speak to remain unaware of what it really is. I am aware of how challenging it is to live with someone who has autism and how it can affect your life.

We are very lucky that my brother Arvind was diagnosed at such a young age as it enabled us to get as much help for him as possible. It allowed us to assist his development by getting him all the additional support he needs.

Ever since I have discovered what autism is and how it affects each person so differently, I have become determined to do everything I can to help and support others who face similar challenges. It is for this reason that I actively sought out Autistica and decided to do everything I could to raise funds particularly to help improve early diagnosis and intervention, as I believe that the earlier autism is diagnosed, the more we can do to help. I also want to raise awareness to increase our understanding. I can honestly say that from my perspective Autistica is the leading charity that will make the most difference for people and families living with autism, because of their focus on research and understanding. So in July this year, I ran in the British 10K to raise money for Autistica’s important work and help make a difference.

The festive season is a time for generosity and for thinking about others. For this reason I am asking you, in the run up to Christmas, to support Autistica. Autistica is a really wonderful charity that I am very passionate about. They are unique in that they fund world-class medical research which offers real hope for families like mine. They fund research to understand the causes of autism, improve diagnosis, and develop new interventions. Autistica is the UK’s leading autism medical research charity, so I can assure you that your donations will be well invested. They are particularly focussed on research into early interventions, mental health, and ageing with autism crossing the lifespan of the condition. My brother will always have autism and he will need support throughout his life.

Autistica want what I want and what I imagine so many other families want: to ensure that the key difficulties that families are faced with every day are addressed and people with autism have the best in life from childhood through to old age.

Please give whatever you can this Christmas to this wonderful charity. You can donate really easily by clicking here.

I hope you all have a Happy Christmas and New Year.