Newsroom University of Manchester

Autism crisis sees thousands of children wait years for support, report finds

Wed, 07 Feb 2024 12:01:57 +0000

A has revealed a crisis in children’s autism assessment, warning that thousands of autistic children and young people are waiting months - or even years - for health and education support.

With the number of children accessing autism services now at a record high, the report - by the initiative led by and the think tank - has shown how parents are being left to navigate a complex support system for their autistic child that is hampered by processing delays and waiting lists.

The report sets out a number of key recommendations for tackling the assessment crisis, calling for a ‘needs-led’ approach instead of relying on a ‘diagnosis-led’ system, where early identification becomes the norm and faster effective support is offered without relying on a diagnosis.

It argues that children and young people with autism and conditions such as ADHD can thrive in mainstream education if their needs are supported in a timely way. Early identification and support can mitigate the negative and costly effects on autistic children’s physical health.

The report highlights how since Covid-19 there has been a 306% increase in the number of children waiting for an autism assessment. Just one in ten children are receiving an appointment within 13 weeks of being referred, while more than one in four parents have waited over three years to receive support for their child.

As one parent seeking an assessment for her child told the report’s authors, trying to receive an assessment was “an absolute nightmare … our systems in health and our systems in education don't link and can't talk, and we can't transfer things over, and things had to be logged in one place and not another.”

The report’s analysis reveals a system under unsustainable pressure.

In September 2023, there was a 27% rise in new autism referrals over the last year.
In July 2022, more than 125,000 people were waiting for an autism assessment by mental health services, an increase of 34% since the previous October. By July 2023, this number had risen to more than 143,000. Figures published in September 2023, show there were 157,809 patients with an open referral for suspected autism.
93% of children did not receive an appointment within 13 weeks of being referred.
The number of children yet to receive an appointment after 13 weeks has increased by 36% since Covid-19, and there has been a 21% increase in the last twelve months.
More than one in four parents have waited over three years to receive support for their child.
The evidence shows that children born to mothers without educational qualifications will receive an autism diagnosis two years later than their peers, and that issues around timely identification and support are exacerbated for girls, who are more likely to be misdiagnosed and diagnosed later than boys, or not at all.
Children and young people from ethnic minority backgrounds are experiencing lower rates of identification of autism and often experience more severe difficulties.

The report warns that the failure to provide the right autism support can lead to poor long-term outcomes for autistic children, including an increased prevalence of connected conditions such as mental ill health and a greater risk of school exclusion or not attending school. Data from the Connected Bradford database included in the report reveals that children who had been referred but were still waiting for an assessment were at greatest risk of being excluded from secondary school.

Autistic children who had a diagnosis were less likely to be excluded from school, compared to those awaiting an assessment, suggesting a diagnosis and subsequent support has a protective effect. With waiting times increasing, there is a growing risk to education outcomes, with evidence suggesting that many autistic children are ending up in expensive Alternative Provision.

The report also describes how a major barrier to existing systems is the perceived need for a medical diagnosis of autism before any child can receive support, with the perception among schools that this is a requirement, preventing some children from accessing support. Given the long waiting lists, many autistic children are not receiving the support they need because they do not have a formal diagnosis.

It makes three key recommendations to Government which have the potential the decrease the long-term costs associated with not acting early:

Building effective partnerships between education and health professionals for assessing and supporting autistic children. This should include delivering assessments in education settings and making a holistic offer of support in schools and nurseries before and after a formal diagnosis is made.
Providing and extending access to mandatory Continuing Professional Development (CPD) courses for health, education, and social care professionals that improve understanding and awareness of autism (and related issues). These courses should include information on how to create “neurodiverse friendly” environments, and particularly raise awareness of autism in girls and ethnic minority groups. Additional training should be co-produced by individuals with lived experience and delivered to professionals and integrated into undergraduate health and education professional training to improve the identification of autistic girls.
Creating formal partnerships at a local authority level comprising sector leaders (including schools, health, voluntary services, faith, universities, educational psychologists, and businesses) to oversee a prioritised governmental ward-level approach to addressing the autism crisis. The partnership should focus on its most disadvantaged wards and provide leadership in trialing data-driven, community and family co-produced, “whole system” approaches to improve autism support with and through education settings.

“The number of autistic children seeking support is at a record high and the number waiting for an assessment has rocketed since Covid,” said Anne Longfield, Executive Chair of the Centre for Young Lives. “The autism assessment crisis is leaving thousands of children without the support they need and parents having to battle their way through a nightmare process that can take years to resolve.

“The pressure and stress this is putting on families and children can have terrible and damaging consequences for mental health and for children’s education chances. Autistic children with a referral who are waiting for an assessment are at significantly greater risk of exclusion from school, with all the further risks that can bring. If waiting times continue to increase, so can the risk of increased exclusion and poorer educational outcomes for autistic children.

“The evidence shows the need to move to a system of support that responds to the needs of autistic children, rather than waiting for diagnosis before any help appears. Without urgent reform, we cannot hope to improve the life chances of the next generation.”

Therapy for babies with signs of autism cuts long-term disability costs

Thu, 06 Apr 2023 15:25:00 +0100

New research evaluating the potential cost savings of a therapy for babies displaying early autism signs has predicted a three dollar return to Australia’s National Disability Insurance Scheme (NDIS) for every dollar invested in therapy.

Published in the prestigious JAMA Network Open, the health economic study drew on the results of a landmark multi-centre randomised clinical trial which reported the world’s first evidence that a therapy commenced in infancy (iBASIS-VIPP)* could reduce early developmental disability to the point where a childhood clinical autism diagnosis was two-thirds less likely.

Now, researchers from the University of South Australia (UniSA) and Telethon Kids Institute, in partnership with the University of Manchester, La Trobe University, Griffith University and the University of Western Australia, have used this clinical trial data to model downstream cost implications for children up to age 13.

Modelling downstream disability support costs to the NDIS system, they predicted that use of the iBASIS- VIPP therapy during infancy would return a net cost savings of $10,695 per child, representing a three-to- one return on investment by age 13.

Lead author, UniSA’s Professor Leonie Segal, Chair, Health Economics and Social Policy, says the estimated cost savings are conservative as they only covered support costs to the NDIS until a child turned 13, and did not consider cost savings to other systems (for example, health, education, parental employment).

“By investing in services early in life for babies showing early autism signs – and thereby reducing levels of disability – the study predicted a net cost savings of $10,695 per child by age 13 years,” Prof Segal, a health economist, says.

“The modelling also predicted that savings in support costs associated with disability would balance out therapy costs shortly after the child turned five – just four years after delivery of the therapy.

“The findings clearly argue the case that investing in early support for babies represents a good investment for the whole community.”

Prof Jonathan Green Professor of Child Psychiatry from University of Manchester says “this is a landmark study in autism which shows, for the first time, the value of pre-emptive intervention in reducing services use and costs later in child development. The modelling was made possible by the structured NDIS health insurance system in Australia, but the implications of this go far wider – completely applicable to other health systems such as the UK. This is because the kinds of services modelled in the Australian system are comparable to those used in the UK and other advanced health systems – so we can confidently assume that this intervention applied in the UK will result in comparable savings.”

“The discovery of therapies that reduce the disability experienced by children will often mean that that child requires fewer supports in later childhood. This is fantastic news for the child, their family and the systems that support kids and families.

Telethon Kids Institute’s Prof Andrew Whitehouse – the Angela Wright Bennett Professor of Autism Research at Telethon Kids and the University of Western Australia and Director of CliniKids – says autism is not typically diagnosed until three years of age. However, therapies commencing during the first two years of life – when the initial signs of development difference are observed, and the brain is rapidly developing – can positively impact developmental outcomes in later childhood,” Prof Whitehouse says.

He says many services used the presence or absence of a diagnosis as a ‘trigger’ for funding and therapy, but this study reinforces the potential value of therapies prior to a diagnosis.

“Disability associated with autism has cost and quality of life implications for families and may result in extra government spending on areas such as health, education, disability services, and income support,”

“Reducing disability associated with autism can relieve hardship to the individual, and in the process relieve costs to the individual, their family, and the broader systems that support them. At a time when NDIS sustainability is of great importance to everyone, these findings are very significant.”

“I want to make it crystal clear that this is about finding the best use of funds to create the best outcomes for children,” he says.

“This study is about how to provide the right supports to kids and families at the right time and in the right amount. Understanding this is critical in helping to structure systems to support kids and families when they need it.”

*iBASIS-VIPP is a video therapy that helps parents understand and adapt to their baby’s communication style to optimise social and communication development in babies aged 9-14 months.

Professor Jonathan Green from University of Manchester led the development and initial testing of iBASIS-VIPP along with UK colleagues, published in 2017. The replication trial of iBASIS-VIPP in Australia, on which this current paper is based, was led by Telethon Kids Institute’s Professor Andrew Whitehouse. It identified babies with early signs of potential autism (reduced eye contact, imitation, or response to name) using the Social Attention and Communication Surveillance Revised (SACS-R) tool, finding that a clinical diagnosis of autism at age three was only a third as likely in children who received iBASIS-VIPP compared to those who received treatment as usual.

Child neurodevelopment and autism research unit launches in South Asia

Wed, 21 Sep 2022 16:03:00 +0100

A £6.95 million Global Health Research Unit on Neurodevelopment and Autism for children in South Asia is to launch with the help of University of Manchester expertise.

The NIHR Global Health Research Unit on Neurodevelopment and Autism in South Asia Treatment and Evidence -known as NAMASTE - has been awarded by the National Institute of Health and Care Research (NIHR) using UK aid from the UK Government which supports global health research.

NAMASTE builds on 91ֱ��’s own autism programme and more than a decade of partnership with India, to implement a novel integrated detection-care pathway for young children with autism and their families in India, Sri Lanka and Nepal, using lay health workers.

NAMASTE will also develop much needed research capacity in the field of neurodevelopmental disorders in South Asia.

Autism Spectrum Disorder (‘Autism’) is a severe neurodevelopmental disability with significant impact on children’s social development and independence into adulthood and profound economic consequences. The WHO included autism as a key priority in its Mental Health Action Plan in 2014.

About five million families in India live with a young autistic child, the great majority with no access to services. Over a 10-year collaboration, Sangath and The University of Manchester have carefully adapted an autism programme developed for the UK to the South Asian context. The resulting 'Parent-mediated Autism Social Communication Intervention for non-Specialists Plus’ (PASS Plus), delivered by lay-health workers, is the first of its kind and has shown real-world impact in two initial randomised controlled trials, with large-scale evaluation underway in New Delhi.

NAMASTE will be a collaboration between the two lead organisations and Autism Care Nepal, the College of Paediatrics Sri Lanka, Harvard Medical School, La Trobe University, Kings College London, the World Health Organisation and Ummeed, Mumbai.

Prof Jonathan Green, the Lead Investigator from the University of Manchester said, "I am delighted and proud at the launch of the NIHR Global Health Research Unit NAMASTE. This is the culmination of more than a decade of development work between University of Manchester and South Asia partners, particularly Sangath in India. It is a tremendous award for Global Health Research and Development in Autism; initiating for the first time an evidenced integrated detection and care support pathway adapted to the needs of low resource settings with non-specialist delivery. NAMASTE has the potential to initiate a step-change in the reach and effectiveness of Autism health care in low-resource settings and support ongoing clinical research developments to benefit the whole region and beyond."

Dr. Gauri Divan, co-principle investigator from Sangath stated: “This is the result of over ten years of systematic research in the area of community care for autism which we have been doing in Sangath. We know that families continue to struggle to receive a diagnosis and then to find proven affordable care. We hope to use our experience with working with ASHA workers in Delhi, who have been delivering the PASS Plus intervention in the homes of families. This experience has given us confidence that we can implement this across districts in South Asia by collaborating with existing health care providers and provide examples for scaling up services.

Parent advocate Gopika Kapoor, who will be part of the programme shared “ As a parent of a child with autism, living in an urban areas, with access to resources and no financial constraints, I am aware of my privileges, as I am of the fact that my son and I form a minority in the Indian subcontinent. NAMASTE will help families across the subcontinent access evidence based care techniques which will help them support their children to thrive.”

Dr Sunita Amatya, Chairperson, AutismCare Nepal Society stated that “NAMASTE is a potential game changer in the arena of developmental disabilities and autism and is an absolute need of the time in Nepal. The need for early detection and intervention services has not yet been identified at a policy level in Nepal, and this program will facilitate this step.”

Dr Asiri Hewamalahe, Consultant Community Physician, Ministry of Health, Sri Lanka and Dr Dilini Vipulaguna a community paediatrician, who will together be leading the work in Sri Lanka are clear that

"Namaste will complement the existing system of early detection and early interventions for developmental disorders including autism in Sri Lanka. Most importantly, it will fill the gap in caregiver training and parent advocacy which is a timely need for families. During the current context of economic hardships to Sri Lanka 'Namaste' is indeed a blessing".

Prof Vikram Patel from Harvard Medical School, is pleased that the work that his team has supported in Sangath involving the use of digital platforms to help non-specialists to learn and then deliver pyscho-social interventions will be incorporated in NAMASTE. “Digital tools offer the most exciting opportunity to rapidly scale up, and assure the quality of, psychosocial interventions for mental health. NAMASTE will be the first program in the world to do so for autism”.

Blueprint for radical redesign of care for autistic children published

Wed, 16 Mar 2022 09:00:00 +0000

Some of the world’s leading experts on autism have published a redesigned care pathway for autistic children and their families based on early detection and family involvement.

Published in the the new pathway created by an international team aims to improve the organization of health and care services for autistic people in the UK and internationally.

“Existing services are reactive and often unevidenced, despite recent scientific advances in how to identify and support autistic children from their early years, public discussion and advocacy,” said Professor Jonathan Green from The University of Manchester.

“But we now have the evidence and ideas to enable us to re-design care for autistic children and families in a way that fits the 21^st ��Գٳܰ��.”

Using 20 year’s work in service development and the use of digital technology, the team argue an integrated early care pathway will improve the service autistic children and their families receive.

They draw on the best available quality evidence in autism, and ideas from what has worked in care for other enduring health conditions internationally.

The approach involves identification of signs of neurodiversity in early childhood before diagnosis and links to family-based care.

It has been shown by the team in previous research to reduce some of the stress and difficulties an autistic child can experience during their development.

And it can, they say, ease waiting list bottlenecks for later autism diagnosis and long waits for children and families before care.

Following diagnosis, similar models of family-based care give families the best tools and confidence to look after their child in ways that are have been shown to improve the child’s long-term development and well-being.

The authors then propose an integrated system of supportive care through Case Management and targeted additional (‘step-up/step-down’) targeted specialist intervention. This ongoing care system uses new digital health technologies and collaborative work with parents to provide them with appropriate long-term supports for the child’s evolving needs.

Professor Green added: “We have tried in this model to combine the best ideas from how services are organized for other health conditions internationally, the best evidence from our field on identification of neurodiversity and associated care, along with listening to what families and the autistic community say they need.

“We want to move from a system with long waiting lists which is often reactive to crises – to an integrated system that identifies needs earlier on and provides the appropriate early support that will provide enduring support and minimize later difficulties. Innovations in digital health technologies will be important in making such a system workable”.

Autism spectrum conditions are a developmental aspect of neurodiversity affecting at least 1:100 people and often having a profound impact on children’s social development and their and their families’ wellbeing into adulthood.

‘Digital health technologies provide an unprecedented opportunity to facilitate proactive and personalized care and support to autistic children and their families’, says Professor Sandra Bucci, an NIHR Research Professor and Professor of Clinical Psychology at The University of Manchester and one of the authors; ’This is already occurring in other mental health areas, and it is time to leverage digital tools to optimize care for children and their families and clinical workflows in services’.

"Professor Josephine Barbaro, La Trobe University, Australia said “This proactive model of care from early identification to targeted supports is extremely timely, given recent evidence of highly effective early autism screening from 11 months of age”.

“Too often we see autism therapies and supports untethered to any evidence”, says Professor Andrew Whitehouse from the Telethon Kids Centre Perth Australia; “By contrast, this new pathway is deeply embedded in 20 years of clinical research, and holds great promise of connecting children to the evidence-based supports that they need. This is a vision that is ready for adoption.”

Dr Venkat Reddy, Consultant Neurodevelopmental Paediatrician and Lead Clinician, Cambridgeshire and Peterborough NHS FT, Officer for Digital Health and Technology, UK Royal College of Paediatrics and Child Health says; "This integrated planned model of service delivery supported by digital technology has the potential to provide a blueprint for support and interventions for autistic children and their families across the world. This is extremely timely as we are all trying to develop long term strategies and action plans to achieve early recognition and needs led support for autistic children."

Therapy for babies showing early signs of autism reduces the chance of clinical diagnosis at age 3

Tue, 21 Sep 2021 08:55:33 +0100

, ;

, ,

A therapy for infants showing early signs of autism reduces the chance of the child meeting diagnostic criteria for autism at three years of age. That’s according to our new research, published today in the journal .

Therapy for children with autism often begins after receiving a diagnosis, which usually doesn’t occur until after the child turns two.

Our findings suggest starting therapy during the first year of life, when the brain and mind are developing rapidly, may provide even greater benefits.

Infants who received the therapy at 12 months of age were re-assessed at age three. They had fewer behaviours of autism, such as social communication difficulties and repetitive behaviours, compared to infants who didn’t receive the therapy.

Infants who received the therapy were also less likely to meet criteria for an overall diagnosis of autism when they were three.

Autism diagnosis

Like all neurodevelopmental conditions, autism is diagnosed using “deficit-focused” diagnostic criteria. In other words, children are assessed on what they can’t do.

The is the authoritative guide describing the behaviours we use to diagnose neurodevelopmental and psychiatric conditions. It specifies individuals must have “persistent deficits” in social communication and behavioural interaction to receive a diagnosis of autism spectrum.

Significantly more children are now recognised as having difficulties learning social communication skills than previously. This has led to an increase in the numbers of children being diagnosed with autism – now estimated to be .

These social and communication difficulties, restricted behavioural repertoire and sensory issues, can present significant barriers to relationships, education and employment as they mature. So reducing these challenges can be important to helping individuals thrive into adulthood.

The aim of the therapy we trialled in our study was to help support social communication skills early in life, with the aim of reducing these long-term barriers.

The therapy

The therapy, called iBASIS-VIPP, was based on the (VIPP) program. This program was adapted by our colleagues in the United Kingdom to specifically support social communication development.

The therapy is parent-led, which means parents and caregivers, who are the most prominent and important people in their babies’ lives, are trained to deliver it.

iBASIS-VIPP uses video-feedback to help parents recognise their baby’s communication cues so they can respond in a way that builds their social communication development.

Parents are taught to recognise their baby’s communication cues.

Parents are videoed interacting with their baby in everyday situations, such as feeding and playing. The trained therapist then provides guidance to the parent about how their baby is communicating with them, and they can communicate back to have back-and-forth conversations.

We know these back-and-forth conversations are crucial to support early social communication development, and are a precursor to more complex skills, such as verbal language.

Importantly, parent-infant interactions are in no way the “cause” of autism. Infants are born with developmental vulnerabilities, which other studies tell us are likely of genetic origin.

This therapy focuses on supporting parent-child interactions as a way of enriching their social environment, creating learning opportunities for the child. And this is tailored to the child’s unique abilities.

The therapy takes the approach that children who develop differently experience the world and learn skills in different ways. By understanding unique abilities and interests of each baby, we can use these strengths as a foundation for future development.

What we found

In our study, we identified 103 infants in Perth and Melbourne who were showing early behavioural signs of autism, such as reduced eye contact, imitation or social smiling.

Fifty of the infants were randomised to receive the iBASIS-VIPP therapy for five months. The other 53 infants received the usual services they would receive in their local community, such as allied health therapy, working with psychologists, speech pathologists and occupational therapists.

The babies then received developmental assessments at around 18 months of age, two years, and three years.

When the babies were aged three, independent clinicians who did not know which therapies the children had received, reviewed all of the developmental information collected. And they determined whether the children met diagnostic criteria for autism.

Half the babies in the study received the therapy, with the other half treated as usual.

The iBASIS-VIPP therapy was so effective in supporting children to learn social communication skills that only 6.7% of the children met diagnostic criteria for autism at age three years, compared to 20.5% of children who did not receive the therapy. That’s a reduction of two-thirds.

While most children in the study still had some level of developmental difficulties, the therapy supported the development of social communication skills. This meant they no longer met the criteria for a diagnosis.

The iBASIS-VIPP therapy led to increased parental responsiveness to their child’s unique communication. It also improved parent-reported language development, compared to the control group.

This is the first time a “pre-emptive” therapy – that is, a therapy provided before diagnosis – has shown an effect on autism diagnostic outcomes.

What do the findings mean?

This therapy represents a new way of providing support to infants showing early developmental difficulties.

Many therapies for autism try to improve development by working with children directly to shape more “typical” behaviours.

By contrast, this therapy does not work with the child directly but with the social environment around the child. It adapts to each child’s unique differences, and helps them learn in a way that is best for them.

By doing so, this therapy was able to support social communication skills and behavioural expression to the point that infants were less likely to meet the “deficit-focused” diagnostic criteria for autism.

Each child is different and treatment needs to be tailored to them.

This finding provides strong evidence for a new model of how we provide clinical support to children with developmental differences.

Rather than waiting until a diagnosis to start therapy – typically at two years of age at the earliest – we need to identify developmental differences as early as possible. Then we need to provide developmental supports that nurture each child’s strengths.

At its most basic, this is a change of clinical support from “wait and see” to “identify and act”.

The finding also emphasises the importance of providing supports to children based on functional difficulties, rather than the presence or absence of a diagnosis. This approach is consistent with Australia’s .

By understanding who a child is (their strengths and challenges) rather than what they are (a diagnostic label), we can provide individualised therapy supports that will help them towards their full potential.

, Bennett Chair of Autism, Telethon Kids Institute, ; , Professor of Child/Adolescent Psychiatry, , and , Associate Professor of Developmental Psychology,

This article is republished from under a Creative Commons license. Read the .

Therapy with babies boosts social development, reducing clinical autism diagnosis by two-thirds

Mon, 20 Sep 2021 16:00:00 +0100

This Australian study trialled a parent-mediated therapy, iBASIS-VIPP, which was developed by the study’s UK collaborators, led by Professor Jonathan Green from The University of Manchester.
The use of iBASIS-VIPP reduced clinician autism diagnoses at age three by two-thirds.
This is the first evidence that a pre-emptive intervention during infancy can lead to a significant reduction in the social communication difficulties characteristic of autism, and reduced likelihood of a clinician autism diagnosis in early childhood.
The intervention also resulted in increased parental sensitivity to their baby’s unique communication and an increase in parent-reported language development.
A previous UK trial of iBASIS-VIPP had shown similar positive benefits of intervention on social development and behaviour which were sustained after the end of therapy – but numbers were too small to show if there was an effect on clinical diagnosis.

A parent-led intervention that supports the social development of babies displaying early signs of autism has significantly reduced the likelihood of an autism diagnosis being made in early childhood, according University of Manchester scientists, part of an international research team led by CliniKids at the Telethon Kids Institute in Australia.

In a study published in , the team led by Professor Andrew Whitehouse (the University of Western Australia) and including Professor Jonathan Green, Dr Ming Wai Wan and Dr Carol Taylor from the University of Manchester, found that a clinician diagnosis of autism at age three was only a third as likely in children who received the pre-emptive intervention (iBASIS-VIPP) compared to those who received treatment as usual — the first time such an improvement has been demonstrated worldwide.

The study builds on previous work by the team led by Jonathan Green at The University of Manchester in originally developing and testing the iBASIS-VIPP intervention in a trial in the UK.

Professor Green said: “These findings are the first evidence that a pre-emptive intervention during infancy could lead to such a significant improvement in children’s social development that they then fell below the threshold for a clinical diagnosis of autism.

“Many therapies for autism have tried previously to replace developmental differences with more ‘typical’ behaviours. In contrast, iBASIS-VIPP works with each child’s unique differences and create a social environment around the child that helps them learn in a way that was best for them.

“The therapy uses video-feedback to help parents understand and appreciate the unique abilities of their baby, and to use these strengths as a foundation for future development.

“By doing so, this therapy was able to support their later social engagement and other autistic-related behaviours such as sensory behaviours and repetitiveness, to the point that they were less likely meet the ‘deficit-focused’ diagnostic criteria for autism. This is the first evidence that a pre-emptive intervention during infancy could lead to such a significant improvement.

“The children falling below the diagnostic threshold still had developmental difficulties, but by working with each child’s unique differences, rather than trying to counter them, the therapy has effectively supported their development through the early childhood years.”

Professor Green added: “With this therapy we are providing support before a diagnosis is given – and parents overwhelmingly want this. The finding is consistent with previous findings which increases our confidence in the reality of the results. This evidence could have a massive impact on clinical practice and public health – not that many clinical trials have such potential.”

The four-year randomised clinical trial enrolled babies aged 9-14 months to investigate the impacts of iBASIS-VIPP. All babies had shown early behavioural signs of autism. Over a period of five months, half received the video intervention, while a control group received current best practice treatment.

Eighty-nine children completed an assessment at the start of the study, at the end of the therapy period, and when they were two and three years of age. Identification, assessments and interventions took place in Perth as a collaboration between Telethon Kids and the Child Development Service, which is part of the Child and Adolescent Health Service, and in Melbourne at La Trobe University, led by Associate Professor Kristelle Hudry.

Professor Whitehouse said given the high prevalence of autism worldwide, the implications of the findings were enormous. In Australia, about 2 per cent of all children have an autism diagnosis.

“Autism is not typically diagnosed until three years of age, however, interventions commencing during the first two years of life, when the first signs of development difference are observed and the brain is rapidly developing, may lead to even greater impact on developmental outcomes in later childhood,” Professor Whitehouse said.

“This is a genuine landmark moment for child health research. Our aim is to understand each child’s strengths and challenges so that we can better support and nurture the unique abilities they bring to this world.

“This is an important step forward in what we hope is an opportunity to develop new clinical models that use very early intervention in babies showing early behavioural signs of autism.”

Professor Whitehouse said follow-up of study participants in later childhood, when the behaviours for autism may be more apparent, would be critical to determining the longer-term significance of the video intervention.

Collaborating institutions included La Trobe University, The University of Western Australia, the Western Australian Child and Adolescent Health Service, Griffith University, the University of South Australia, The University of Manchester UK, Evelina London Children's Hospital, Guys and St Thomas’ NHS Foundation Trust UK.

The full paper, Effect of pre-emptive intervention on developmental outcomes for infants showing early signs of autism: A randomized clinical trial of outcomes to diagnosis can be read here.

Graduate uses Lockdown to make autism documentary

Wed, 06 May 2020 18:00:00 +0100

A University of Manchester graduate with Aspergers Syndrome has made the most of the Lockdown to put together a documentary about the impact of his condition on mental health.

Thomas Henley, 23, a Biomedical Sciences graduate and Commonwealth Games Gold Medallist in Taekwondo, home-edited the footage gathered while he was a student.

The documentary was a final year Science Communication project at The University Of Manchester. It explores different views and experiences of people affected by the condition and asks why mental health problems are prevalent in people with autism.

The popular YouTuber and Podcaster who hosts the ‘Aspergers Growth’ and the ‘'Thoughty Auti Podcast'’ has been campaigning across the UK on issues affecting autistic people.

Now training to be a boxer, Thomas was also awarded the coveted trophy of ‘Best Male Fighter’ in the Commonwealth for his weight category and age.

He said: “The isolation caused by the COVID-19 Lockdown has been incredibly tough on me: having to completely rework your life adds a whole new dimension of anxiety and stress to people with autism.

“My routine revolved around my job as a Special needs teaching assistant, my boxing schedule at Harrogate ABC and the maintenance of my podcast, YouTube channel and my creative writing.

“COVID-19 completely blew me out of the water and I think most people would be able to eliminate those things they could not do during the isolation… but for me, I had to start from scratch.

“The documentary really helped me in this unfortunate situation as it gave me a sense of purpose and something to focus on until I’d established a healthy routine once more”.

He added: “I think one of the things that surprise most people is that many of us- including me - have very serious mental health conditions: nobody sees the daily panic attacks, the low self-esteem, the intrusive thoughts, the dark cloud that follows you everywhere.

“And that is what this film is trying to get across.”

Thomas was diagnosed with Aspergers Syndrome when he was 10 and remembers the sense of empowerment his diagnosis gave him.

Thomas eventually undertook the Leadership module in his final year at 91ֱ�� and received a 91ֱ�� Leadership Gold Award for his charity work with autistic people at a local Taekwondo club.

Working with autism expert from the University Dr Emma Gowen, he hopes the 40 minute film will attract the attention of people both on and off the autistic spectrum.

He said: “The possibility of improving the lives of autistic people was at the forefront of my mind during the making of this documentary.

“I want to raise awareness of autism and the toll that traumatic social experiences can have on their mental health.

“Higher rates of bullying, social isolation, alienation, anxiety disorders and suicidal ideation are some of the statistics that fuelled my desire to put this film out.

“Something just has to be done and these facts have been out of the public eye for too long.”

You can see the full documentary and his website . Check out Thomas’ YouTube channel 'Aspergers Growth', the 'Thoughty Auti Podcast' on Spotify, and his social media pages on Facebook, Twitter, and Instagram (@aspergersgrowth).

Parent-led early intervention for autism in children shows reduction in symptoms

Wed, 26 Oct 2016 09:24:48 +0100

An early intervention for autism aimed at helping parents communicate with their child has been shown to have an effect on reducing the severity of autism symptoms, and this reduction continued for six years after the end of treatment, according to a study published in The Lancet.

The study led by The University of Manchester, King’s College London and Newcastle University (UK) and funded by the Medical Research Council is the first to identify a long-term effect of an early intervention for autism, and is consistent with UK guidance supporting the use of early intervention.

The researchers found that children who had received the intervention aged 2-4 had less severe overall symptoms six years later, with improved social communication and reduced repetitive behaviours, although no changes were seen in other areas such as language or anxiety. However, they say that difficulties remain and additional ongoing support will usually be needed as the children get older.

“This type of early intervention is distinctive in being designed to work with parents to help improve parent-child communication at home,” says Professor Jonathan Green of The University of Manchester and Royal 91ֱ�� Children’s Hospital, who led the study. “The advantage of this approach over a direct therapist-child intervention is that it has potential to affect the everyday life of the child. Our findings are encouraging, as they represent an improvement in the core symptoms of autism previously thought very resistant to change.”

Autism spectrum disorder is a developmental disorder that affects about 1 in 100 people; it can have a profound effect on children’s social development into adulthood and results in an estimated £1-1.5 million in lifetime costs for families and the community. The type of early intervention used in this study focuses specifically on working with parents.

Through watching videos of themselves interacting with their child and receiving feedback from therapists, parents are able to enhance their awareness and response to their child’s unusual patterns of communication; they become better able to understand their child and communicate back appropriately in a focused way. Parents take part in 12 therapy sessions over 6 months, followed by monthly support sessions for the next 6 months. In addition, parents agree to do 20-30 minutes per day of planned communication and play activities with the child.

In the original trial, 152 children aged 2-4 with autism were randomised to receive the 12 month early intervention or treatment as usual. The study published today is the follow-up analysis of the same children approximately 6 years after the end of treatment. 121 (80%) of the 152 original trial participants were assessed as part of the follow-up study. Of these, 59 children had previously received the intervention and 62 had received treatment as usual. Autism severity was measured using the international standard measure of autism symptoms (ADOS CSS), which combines social communication and restricted and repetitive behaviour symptoms into an overall measure of severity scored 1-10, with 10 being the most severe.

At the start of the trial, both groups had similar scores (8.0 in the intervention group, 7.9 in the treatment as usual group). At follow-up, children in the intervention group scored an average of 7.3, and 46% (27/59) of the group were in the severe range. By comparison, children in the treatment as usual group scored an average of 7.8, with 63% (39/62) in the severe range. This corresponds to a reduction of 17% in the proportion of children with severe symptoms in the intervention group compared to treatment as usual.

At follow-up, there were also improvements in children’s communication with their parents for the intervention group, but no differences in the language scores of children. Additionally, parents in the intervention group reported improvements in peer relationships, social communication and repetitive behaviours. However, there was no significant difference between the two groups on measures of child anxiety, challenging behaviours (eg, conduct/oppositional disorder) or depression.

The authors note that the study included children with core autism symptoms rather than wider autism spectrum disorder, and therefore cannot be sure how these results would apply to children with less severe symptoms. They also add that the study was a follow-up at age 7-11 years so does not provide information in how children’s symptoms will develop in adulthood.

.

‘Teashirt’ gene links autism and kidney problems, new study finds

Wed, 28 Sep 2016 09:40:02 +0100

Link between children with kidney problems and autism
Implications for how doctors work with patients who display either kidney or learning problems

A gene dubbed the ‘Teashirt’ by its discoverers has been identified as a link between children with kidney problems and autism, in a new study which has implications for how doctors working on both conditions administer tests to their patients.

The new paper, published in the journal Nature Genetics, was led by the Developmental Biology Institute of Marseille, collaborating with The University of Manchester, and it describes the effects of mutations of Teashirt in people and mice.

The gene, formally named Tshz3, had already been implicated by the joint research team in 2008 as being essential for development of smooth muscle in the wall of the ureter. Mutant mice were born with ‘blown-up’ kidneys because their ureters failed to actively propel urine down to the bladder.

Professor Adrian Woolf from The University of Manchester, then working as a children’s consultant in London, discovered that one of his patients born with abnormal kidneys had a deleted Tshz3 gene and also displayed characteristics of autistic spectrum disorder.

The French team also realised that mice with Tshz3 mutation not only had kidney problems but also displayed learning difficulties.

The findings sparked a global search of other kidney clinics, which returned ten more patients with similar symptoms. After genetic testing, it was confirmed that the same gene was missing in all of them – findings which are published in the new paper.

Professor Woolf said: “The mutant mouse kidney looks just like ‘hydronephrosis’, the distended kidney seen in about 1 in 1,000 individuals when they are screened by sonar scans as unborn babies. It now appears that this gene is linked to at least some of these cases and that it also has implications for how our brains work in childhood.”

The research was led by Professor Laurent Fasano in Marseille who discovered the teashirt gene in fruit flies in 1991. He said: “The sooner the better; early detection of this new condition will favour early behavioural therapies, which is good for the kids and their family.”

The link between the two diseases has implications for how doctors work with patients who display either kidney or learning problems.

Professor Woolf, who is also a consultant at the Royal 91ֱ�� Children’s Hospital where he runs a renal genetics clinic, added: “A fairly simple genetic test on patients being treated for either kidney problems or autistic spectrum disorder could identify whether the Teashirt gene is missing and also highlight that the patient may need investigation for the other condition. Time will tell whether TSHZ3 plays a role in many more cases than we’ve currently been able to identify.”

The paper ('Tshz3 deletion causes an autism syndrome and defects in cortical projection neurons' ; DOI 10.1038/ng.3681) will be published in the journal Nature Genetics on 26 September 2016. Research was part-funded by the Medical Research Council.

Research looks to help children with social communication difficulties

Wed, 27 Jul 2016 10:54:41 +0100

New research led by The University of Manchester aims to help children with ‘hidden’ speech and language problems.

Children with social communication disorder (SCD) find it hard to understand and use language, especially in social situations. Although they may be quite chatty – so their difficulties aren’t always spotted – their problems expressing themselves and understanding others can affect how they do at school, their friendships and their emotional and mental health. Children with SCD might lack tact, have difficulty in telling a story so it can be understood and struggle to understand others. They may also have autistic traits.

The study will train NHS speech and language therapists in a new intervention, specifically designed to give children new language and social skills. The Social Communication Intervention Programme (SCIP) was developed by one of the UK’s leading experts in this field and Research Speech and Language Therapist Jacqueline Gaile, both based at The University of Manchester. It has been tested on a small scale in schools, where teachers and parents reported it led to improvements in children’s social and learning skills.

The research, funded by the National Institute for Health Research () Research for Patient Benefit Programme, will also look at how many children in England are affected and what sort of help they are getting, as it’s a condition that hasn’t always been recognised.

One parent whose views have helped to shape the research is Clare Cusack, whose son Tomas, 16, has SCD with elements of autism. He has worked with Jacqueline for five years. Clare said: “Tomas has had to learn the social rules that come naturally to others, such as being persuasive or having a reciprocal conversation. One size doesn’t fit all with conditions like these – it’s really important that the help he gets is completely sensitive to his needs. Learning these skills has made him more independent and given a voice to his personality, so that people can get to know the real Tomas.”

The work is a collaboration between , Dr Hazel Roddam at the University of Central Lancashire (UCLan) and The University of Manchester, where Dr Adams is clinical senior lecturer in speech and language therapy. She said: “We know there is an association between these communication problems and behavioural difficulties that continue into adolescence. These can have huge repercussions and affect the whole family.

“We very much hope that this intervention, which looks at individual children’s needs, will help to bring about long-term improvements and we will be consulting with parents and therapists to make sure it is of value to them.”

The study is also breaking new ground in the way results will be measured – because the 24 primary school children who will be involved have different needs, individualised aims will be set up and progress measured against these.

Dr Adams added: “We are trying to bring changes in practice and give speech and language therapists new skills. SCD is still something of a hidden problem and there may be different awareness and approaches to dealing with it in different areas of the country.”

Salford's child Speech and Language Therapy service provides assessment, therapy and intervention for children with communication impairments, including children with autism and social communication disorder. It is also active in research.

Helping children with autism transfer new communication skills from home to school

Wed, 22 Jun 2016 16:18:19 +0100

Children with autism generally have difficulty generalising new skills from one context to another
Project will test new ways to transfer the child’s improving communication skills into the education setting

A University of Manchester-led study is testing whether an intervention with parents and teachers can help children with autism transfer newly acquired social communication skills from home into school.

Previous research found that a therapy to enhance parent-child communication in children with autism can help improve their social communication. However, it did not provide evidence that the benefit spread wider into the school environment.

Children with autism generally have difficulty generalising new skills from one context to another, and this represents a challenge in spreading the benefits of therapy into other aspects of everyday life and development.

Autism is a common developmental disorder, with a prevalence of around 1% of the population. Its estimated UK costs, for childhood autism, are greater than the costs associated with other conditions such as childhood asthma, diabetes or intellectual disability.

The ‘Paediatric Autism Communication Trial-Generalised’ (PACT-G) study, funded by Efficacy and Mechanism Evaluation Programme (a partnership between and ), will test new ways to transfer the child’s improving communication skills into the education setting. Aimed at 2-11 year olds, the study will look to extend the parent-child therapeutic model to work in education in parallel to working in the home.

It will assess the impact of the intervention across pre-school and middle childhood and compare outcomes with those from previous research. Its design will also enable the researchers to study the mechanism behind this transfer of skills across different settings, and highlight the most efficient means of helping children and families in this area.

University of Manchester Professor of Child and Adolescent Psychiatry, and Honorary Consultant Psychiatrist at the is leading the project and said, “This project is an exciting opportunity for us to test an extension of our approach using video feedback with parents of young children with autism to include similar training of professionals working with the children in their education setting. If this kind of integrated approach proves to add value for children’s development, then it will have important implications for service delivery in the future. The trial also gives us a unique opportunity to investigate how these children generalise skills across contexts – an important and fundamental question in the developmental science of autism.”

The research team will work with school staff using the same techniques they use with parents, as well as encouraging parents and Learning Support Assistants to communicate regularly together about goals and strategies. The aim is to generate a similar change in school to that generated with parents in the home.

Professor Green added, “We hope that these two effects will add together into a greater combined benefit for the child. This study is just beginning and we won't know the results for a few years, but it is part of an ongoing programme to look at the needs of children with autism at different ages and to see if we can get interventions that build on each other through development to improve the lives of these children and their families.”

One parent taking part in the study said “I realise the importance of understanding what he understands and making my communication directly relevant to the context of the interaction. It’s a real partnership where we discuss the meaning of his communication and I always go away understanding him so much better with insight.”

The study is a collaboration between , University of Manchester, Newcastle University, Kings College London, Guys and St Thomas NHS Trust Evelina Children’s Hospital.

For further information visit the

Father of aid worker killed in Afghanistan honoured by University

Thu, 12 May 2016 11:50:28 +0100

John Norgrove, who graduated from The University of Manchester in 1971, has been awarded Alumni Volunteer of the Year for his work running the Linda Norgrove Foundation, which he established over five years ago in the immediate aftermath of the death of his daughter, Linda Norgrove, an aid-worker in Afghanistan.

The Foundation was created to help women and children in Afghanistan, with a focus on those affected by the war. To date the charity has supported female medical students with scholarships, provided widows with a sustainable source of income and funded an orphanage for disabled children and a wealth of other projects.

John studied civil engineering at the University and has since lived and worked in northern Scotland.

His daughter Linda carried out doctoral studies at the University’s Institute for Development Policy and Management and was awarded a PhD in 2003. In 2010 she was working on development projects in a remote, rural area in East Afghanistan when she was kidnapped and killed.

The University posthumously honoured Linda with an outstanding alumna award in 2011, in a ceremony attended by her former classmates and lecturers.

John said: "I'm so delighted to have received this Award, but the 'icing on the cake' is knowing that Linda would have been delighted as well.An award from the University where we both studied, and for helping women and children in Afghanistan, a cause that would have been so close to her heart."

Since its birth in 2010, the Foundation has given over £1 million to numerous small to medium-sized projects to benefit the women and children who have been affected by decades of conflict in Afghanistan. John, his wife Lorna, and the other trustees all volunteer their time to the charity without pay.

Jane Maciver, who nominated John, said: “John has relentlessly poured his time and effort into this organisation. Despite facing many hurdles and negative assumptions about Afghanistan, John maintains an optimistic outlook and is an inspiration to any who meet him.”

John received his award at the University’s annual Volunteer of the Year Awards which also honour a staff member and a student.

School of Law lecturer Kirsty Keywood won the staff award for her 20 years of volunteering and leadership in support of people with learning disabilities or mental health problems.

Student winner was Sarah Brown, who is studying Linguistics and is Chair of Student Action, the volunteering arm of the Students’ Union as well as volunteering directly on projects.

Her work includes leading People with People, a project which involves planning and running a weekly activities evening for a group of adults who have learning disabilities or autism; volunteering locally with Retrak, an international charity which supports children who are living on the streets to be able to access housing, education and employment; volunteering for The Life Foundation, a non-profit organisation founded by University students, which works to support disabled children and adults who are living in government care homes in Romania; and is a voluntary trained Dementia Friends Champion.

What we’re doing right (and wrong) on autism

Tue, 05 Apr 2016 09:42:21 +0100

As World Autism Awareness Week goes into full swing Dr Emma Gowen, a University of Manchester expert in the condition explains what more needs to be done to make autistic people’s lives better.

“As a researcher, I’m struck by how much more we talk about autism nowadays - but also by how many misconceptions still predominate. World Autism Awareness Week is a fantastic opportunity to talk about these issues and that’s been helped no end by the excellent drama on BBC 1, the A Word. Our project at 91ֱ��, also aims to make an important contribution.

“The A Word does seem to reflect the difficulties that parents face after diagnosis, as support is so patchy and often poor: they are often left in limbo – with little or no support over decisions such as whether to be home schooled or not, and are often spoken to in professional terms that mean little to ordinary working people.

“Our project runs in partnership with , a local peer-support and advocacy organisation. During three workshops, we met many people who live with autism to discuss how academics and autistic people might work together to learn more about autism, resulting in a series of honest and revealing short The films highlight misconceptions autistic people face – as well pointing us researchers to those areas which are important to autistic people themselves.

“Many people think that autistic people have extraordinary talents, but in fact, only at most 1 or 2 in 200 individuals can be described like that. Everyone has their own strengths and weaknesses, and that includes all autistic people.

"And while many people think the condition just affects children, it is simply not true: less than 25% of all autistic people are children and all autistic children grow up to be autistic adults. While over 75% of autistic adults are capable of and wish to work, only 15% are in full-time paid . And at least one in three autistic adults experience severe mental health difficulties due to a lack of support.

“And yes, women can be and are autistic, too. Officially, five times as many men than women are diagnosed with autism but research shows that autism spectrum disorders are vastly under-diagnosed in women, so the balance between the sexes may be much closer than that.

“Societies awareness of autism has increased, so that’s a good thing. Sadly, this can lead to the misleading impression that it’s on the increase when there’s no indication that it is any more or less common now than at any time in the past. What we are seeing is actually a result of changes in how diagnosis was carried out up to the 1980s – when autism was defined very rigidly and perhaps inappropriately. The definition has now been much improved by greater awareness of newer discoveries.

“There is also a growing understanding of the inappropriateness of the 'medical model' of autism, which tends to look for a cure, and uptake of the 'social model' which seeks to understand and accept everyone's individuality: many healthcare professionals and most autistic people now seek to create a supportive environment in which autistic people can flourish. And that, most of all, is what I hope this week will get across.”

NOTES FOR EDITORS

Dr Gowen and Peter Baimbridge from , are available for comment

According to Peter Baimbridge, autistic people do not like the use of the term 'suffering’ when describing autism and so it should be avoided. He prefers the use of 'autistic people', ‘people with an autistic spectrum condition’, or 'people with a diagnosis of autism / an autism spectrum condition.

To see the video and complete a questionnaire, visit

Visit

‘Germ trap’ could save us from flu virus

Thu, 17 Mar 2016 15:00:00 +0000

COVID-19 clarification – April 2020 – the article below, published in 2016, was an overview of early stage research carried out at The University of Manchester. The facemask coatings that were being developed showed some potential in filtering the influenza virus (H1N1), but at no point was the performance of these materials evaluated regarding their ability to filter coronaviruses.

A remarkable new technology developed by 91ֱ�� biochemists has found a way to restrict the spread of flu.

The scientists at biotech company and The University of Manchester have developed a fabric coating which isolates viruses responsible for seasonal and pandemic influenza.

According to the team, the ‘germ trap’ has a capture rate for the virus - which affects millions of people across the world, sometimes severely- of greater than 99%.

The germ trap - which can be added to filters in masks or air filtration systems - is completely harmless and cheap to produce.

The initial research was carried out by The University of Manchester’s Professor Sabine Flitsch, who has been working with company since 2010 with EPRSC funding.

Inventor Paul Hope, who is Virustatic’s Technical Director, said: “We’re very excited about this technology, which could have an important impact on some of society’s greatest challenges.

“It’s a whole new preventative approach to disease and if implemented could be transformative."

“We’re now at the stage where we’re looking for strategic partners to take this technology forwards in terms of developing new products.”

Scientists have struggled to find a way to anchor proteins to utilize their properties.

But now the team have discovered a way to apply one to different substrates such as cotton and other materials.

The team identified specific glycoproteins that have carbohydrates attached to its surface which are configured to mimic the carbohydrate structures on the surface of the cells in the human oesophagus and nasal passages.

The team at 91ֱ�� tested different materials to fix the glycoprotein to substrates, initially using activated carbon cloth, then using cheaper, simpler materials such as cotton.

The anchored and stabilised protein can capture over 99% of flu viruses that come into contact with it. And according to the team, the technology is cheap and easy to produce

Dr Ian Rowles, from The University of Manchester, is EPSRC funded Knowledge Transfer Fellow for the project.

He said: “This has been an exciting collaboration with Virustatic, and our research does indeed show that this technology can slow the spread of flu viruses.

“We hope that eventually, we’ll be able tackle all pathogens by using this technology. So watch this space.”

And they are aiming to further develop the technology so it can capture other potentially deadly pathogens such as Middle East Respiratory Syndrome (MERS) and Severe acute respiratory syndrome (SARS) .

The technology, they say, could, also for the first time produce blood filter membranes that could remove these viruses before they can cause damage.

Paul Hope added: “There is a body of research that identifies blood borne viruses that can cross the placenta causing damage to the foetal neural system.

“There are a number of research papers that show cross placenta infection may be responsible for schizophrenia and autism."

India and Pakistan set to benefit from new autism treatment

Tue, 15 Dec 2015 23:30:00 +0000

This study is the first to have adapted a treatment for south Asian communities
Parents learned from the intervention and the children were more likely to initiate communication

In a world first, clinical researchers from the Universities of Manchester and Liverpool have collaborated with colleagues in south Asia to adapt a parent-led autism therapy and successfully tested it in India and Pakistan, with the aim of improving treatment for an estimated 5 million children in the region with the disorder.

Autism is one of the world’s fastest growing developmental health challenges, with up to 70 million people affected, causing a severe effect on the social development of children. In developed countries children are able to receive specialist treatment to improve their interaction with their families, but in many lower income countries, this is not available.

As a result, researchers, funded by the , adapted a leading UK therapy method known as PACT, an intervention originating in 91ֱ��, which helps parents interact better with their autistic child.

The resulting (parent-mediated intervention for autism spectrum disorder in south Asia) programme was taught to non-specialist health workers in Rawalpindi, Pakistan and Goa, India who then worked with parents of the 65 autistic children who were recruited to the trial.

from The University of Manchester and Professor Atif Rahman from the University of Liverpool, lead authors of the study, said: “We’ve shown that these techniques can help children in the UK, but in south Asia, there are factors such as lack of resources, trained staff, language and cultural differences and poor access to medical centres which means that methods need to be adapted.

“This study is the first to have adapted a treatment so as to allow it to be delivered by non-specialist health workers in south Asian communities. It has been outstandingly successful in showing that such adaptation is both possible and can produce changes that are equal or even better that we achieved in UK.”

The PASS materials were all presented in the parents’ first language and each period of treatment began with a session on the causes and misconceptions about the condition.

At the end of the 12 week period the children were assessed using recognised methods. The parents were shown to have learned from the intervention and the children were more likely to initiate communication with their parents.

"This pioneering study shows us that it is possible to implement high quality evidence-based intervention in low resource communities, even when there are few or no specialists," said Andy Shih, Autism Speaks vice-president of scientific affairs. "It challenges our notions of best practices and how to deliver effective services to communities that need them the most." Dr. Shih leads Autism Speaks’ GAPH initiative, which partners with communities in more than 70 countries worldwide to increase awareness and access to autism services.

The study did show a decrease in one measure of attention, suggesting that there are more refinements that need to be made to PASS, but the 91ֱ�� researchers are optimistic that it represents a cost-effective way of delivering treatment to children in areas where resources and specialist staff are unlikely to be available.

Professor Vikram Patel from the London School of Hygiene & Tropical Medicine, one of the senior investigators added: “The key to developing mental health services in lower income settings is to develop simple and easily understood treatments that can be carried out even when specialist staff aren’t available.

“This study shows that, for autism, these treatments can make a significant difference for the social development of children who would otherwise likely receive little or no help.”

The paper, ‘, will be published in .

Researchers who also collaborated in this paper also came from, Institute of Psychiatry, Rawalpindi Medical College, Pakistan; the Human Development Research Foundation, Islamabad, Pakistan; Sangath, Goa, India; London School of Hygiene & Tropical Medicine; University of Liverpool and Royal 91ֱ�� Children’s Hospital.

Video-based therapy might benefit babies at risk of autism

Thu, 22 Jan 2015 00:01:00 +0000

Researchers at The University of Manchester have, for the first time, shown that video-based therapy for families with babies at risk of autism improves infants’ engagement, attention and social behaviour, and might reduce the likelihood of such children developing later autism.

Commenting on his paper, published in journal, lead author and Professor of Child and Adolescent Psychiatry at the University, , said: “Our findings indicate that using video feedback-based therapy to help parents understand and respond to their infant’s individual communication style during the first year of life may be able to modify the emergence of autism-related behaviours and symptoms.

“Children with autism typically receive treatment beginning at three to four years old. But our findings suggest that targeting the earliest risk markers of autism — such as lack of attention or reduced social interest or engagement — during the first year of life may lessen the development of these symptoms later on.”

Previous research has found that the earliest risk markers 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 worked with children from such a young age to assess the possibility of modifying these early markers with the aim of reducing later risk of developing difficulties associated with autism.

In the study, an adapted Video Interaction for Promoting Positive Parenting Programme (iBASIS-VIPP) was delivered over five months to infants aged seven to ten 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 prevent or lessen the full onset of autistic symptoms prior to diagnosis, by optimising the babies’ social interaction during the first year of their lives.

Fifty-four families with an infant at high risk of autism were randomly assigned to either the iBASIS-VIPP programme or no intervention. The iBASIS-VIPP group received a minimum of six home-based visits from a therapist who used video-feedback to help parents understand and respond to their baby’s individual communication style to improve infant attention, communication, early language development, and social engagement.

After five months, families who received video therapy showed improvements in infant engagement, attention and social behaviour.

Tara Hardacre from Romiley, Stockport took part in the study. Her son Lenny was considered at an increased risk having a sibling, an older brother, who is autistic. She said: “The home visits and activities we were asked to complete were particularly helpful. I was worried that Lenny was autistic too, so I was constantly looking for signs of autism. I was shown what to expect in terms of communication from him, so I felt more confident about the signs to look out for and how he should be developing, which meant I worried a lot less and I stopped over-analysing each stage of his early development.

“Lenny is not autistic, but as a parent with a child who is, I felt it was important to take part in the study which may help with earlier diagnosis and earlier intervention in the future.”

The findings suggest that the therapy may be able to modify the emergence of autism-related aspects of development during infancy. There were also changes in parents’ behaviour, such as being less directive in their interactions whilst increasing infants’ attentiveness. However, reduced responsiveness to language sounds was noted in infants in the video therapy group.

Although the findings are encouraging, the authors caution that because of the relatively limited number of participants, their treatment effect estimates have wide confidence intervals, meaning that larger studies will be needed before researchers can make definitive conclusions about the therapy’s effect on preventing or reducing autism symptoms.

According to Professor Green: “Previous research has shown that parent-based interventions similar to the one we tested here, but delivered later in the pre-school years and to children already diagnosed with autism tend to have the greatest effects on parent-child interaction, whilst having little impact on actual autism symptoms.

“In contrast, the video-based intervention we tested in this study in early infancy seems to have wider impact on a number of behavioural effects and risk markers for later autism.

“The results suggest that the video-based therapy we tested may have a moderate effect on reducing some children’s risk of autism, although larger studies will be needed to confirm this.”

The full paper can be read .

Notes for editors

Media enquiries to:
Jamie Brown
Media Relations Officer
The University of Manchester
Tel: 0161 2758383
Email: jamie.brown@manchester.ac.uk

The funding for this project was led by , with support from , (US) and . The project was also funded by the UK and .

The institutions involved were: , University of Manchester, , 91ֱ�� Children’s Hospital. 91ֱ��, UK. Centre for Brain and Cognitive Development, Birkbeck, University of London, UK. Institute of Psychiatry, Psychology and Neuroscience, King’s College London, National Institute for Health Research Mental Health Biomedical Research Centre, South London, Maudsley NHS Foundation Trust, London, UK. Evelina London Children’s Hospital and Kings College London Neurosciences Centre, London, UK.

Postgraduate students recognised in excellence awards

Tue, 15 Jul 2014 01:00:00 +0100

The outstanding performance of our postgraduate research students has been recognised in this year’s 91ֱ�� Doctoral College Excellence Awards.

The annual awards recognise student performance across the following categories:

Postgraduate research student of the year (President’s distinguished achievement award) - recognises outstanding academic excellence and achievement. The award is given to students who have excelled in some significant manner during the course of their programme.
Best outstanding output - recognises research outputs of the highest quality and acknowledges the continuing importance of high-quality research to the University.
Best contribution to postgraduate research environment or society - recognises the outstanding achievement or contribution of a student towards the postgraduate environment or society (whether this is at a local, national or international level). The award is given to a student who has made a positive impact, demonstrated innovation and creativity in their actions, and been an inspirational role model to other students.
Best contribution to internationalisation - given to the student who best encapsulates the spirit of internationalisation at 91ֱ��.

This year’s winners were:

Postgraduate research student of the year (President’s distinguished achievement award)

Andrew Welfe (Faculty of Engineering and Physical Sciences). In addition to undertaking his research at the Tyndall Centre for Climate Change research, Andrew has represented the University at the 2014 Global Young Scientists’ Summit in Singapore, and has acted as Postgraduate Chairman of the University’s Student Sustainability Forum and as Student Representative for the University’s Carbon Leadership Group.
Denis Volkov (Faculty of Humanities). Denis has several prestigious awards for his work in Russian and Iranian studies and has built up an outstanding publication record.
Charlotte Brassey (Faculty of Life Sciences). Charlotte has produced excellent outputs in terms of both her published papers, in her international impact and in her public outreach work in schools and elsewhere.
Chris Miller (Faculty of Medical and Human Sciences). Winner of the Daniel Turnberg Cup, Chris has combined an exceptional research output with clinical training in advanced cardiac imaging and is now mentoring several junior research fellows.

(PDF document, 27KB).

Best outstanding output

Dan Thornton (Faculty of Engineering and Physical Sciences). Dan's first-author paper on the discovery of four very short duration bursts of radio emission originating from billions of light years away accrued 21 citations in just four months.
Patrick Doyle (Faculty of Humanities). Patrick's article 'Understanding the Desertion of South Carolinian Soldiers during the Final Years of the Confederacy' was published in the Historical Journal and combined meticulous analysis of a little-known government document with the personal letters (found only in manuscript in American archives) of South Carolinian soldiers and their families.
Guillaume Jacquemet (Faculty of Life Sciences). All of Wellcome Trust-funded student Guillaume's first-author papers from his PhD research were published in the ensuing 12 months, each with a high impact.
Shruti Garg (Faculty of Medical and Human Sciences).Shruti's work reported the first evidence on prevalence of autism spectrum disorder in Neurofibromatosis type I. It is notable for its novel findings, methodological rigor and clinical and research consequences.

Best contribution to postgraduate research environment or society

David Ward (Faculty of Engineering and Physical Sciences). David has made significant contributions over a sustained period of time to several voluntary charity projects in the local community, including his own project for people aged 20-26 with learning disabilities, organising fun days, trips and parties, and taking part in homeless outreach programmes.

Best contribution to internationalisation

Sundas Chohan (Faculty of Life Sciences). Sundas introduced an international branch to her Faculty's Postgraduate Society. She has been pivotal in organising numerous international social events, as well as supporting events at the international workshop during intro week.

About 91ֱ�� Doctoral College

91ֱ�� Doctoral College (MDC) has oversight of all doctoral training and researcher development across The University of Manchester.

Notes for editors

Research throws new light on why children with autism are often bullied

Thu, 08 Aug 2013 01:00:00 +0100

A study of hundreds of teachers and parents of children on the autistic spectrum has revealed factors why they are more or less likely to be bullied.

Dr Judith Hebron and from The University of Manchester, say older autistic children are more likely to be bullied than youngsters – going against prevailing thought.

The survey of 722 teachers and 119 parents also revealed that the children would be more likely to be bullied at mainstream, rather than special schools. However, smaller class sizes and a higher ratio of adults to pupils are two of a number of reasons why there may be fewer opportunities for bullying in special schools.

Bullying is less likely if they have strong support networks of friends and teachers and when parents actively engage with their school.

But poor behaviour associated with the condition also leads to bullying as can use of public transport to travel to and from school.

And those children without a ‘statement’ – entitling them to specific support and provision - are also less likely to be bullied than children at School Action Plus.

School Action Plus is not legally binding and less extensive than a statement.

Because younger students have less complicated social groupings, they may be more tolerant of autism, argue the researchers.

However, as they grow older, tolerance of difference may decrease because teenagers often want to adhere more closely to peer group norms, they say.

The results are published in the journal Autism. Dr Hebron said: “Children with autism are easy targets because their behaviour may be regarded as odd or different, and our research tells us this is likely to result in bullying, teasing and provocation.

“At its most extreme, bullying results in suicide, self-harm, low self-esteem, mental health problems and difficulties at school.

“But not all of these children are bullied, and as researchers, we are interested in finding out why.”

She added: “Our results send out a message to parents and teachers to help them identify opportunities where they can intervene to prevent bullying.

“Having an adult on public transport, for example, might be a way to decrease the likelihood of bullying: unstructured social situations with little or no adult supervision are, according to our results, likely to lead to bullying

“Contrary to what people may think, many children on the autistic spectrum – with support from their school and parents –wish to and are able to make friends, so our findings on the importance of social networks are potentially important.

“Peer groups can be very inclusive and a positive culture within a school with a zero tolerance of bullying can nurture this type of environment.”

Notes for editors

by Dr Judith Hebron and Professor Neil Humphrey, published in Autism, is available.

A sample of 722 teachers and 119 parents of children and young people with ASC reported on their child’s experience of being bullied. They were drawn from 269 mainstream schools, special schools and pupil referral units across 10 Local Authorities (in England).

The sample included pupils in:
•    Year 1 (aged 5/6 years)
•    Year 5 (aged 9/10 years)
•    Year 7 (aged 11/12 years)
•    Year 10 (aged 14/15 years)

For media enquiries contact:
Mike Addelman
Press Officer
Faculty of Humanities
The University of Manchester
0161 275 0790
07717 881567
Michael.addelman@manchester.ac.uk

Bigger birth weight babies at greater risk of autism

Thu, 02 May 2013 01:00:00 +0100

The biggest study of fetal growth and autism ever has reported that babies whose growth is at either extreme in the womb, either very small or very large, are at greater risk of developing autism.

It is the first time that a clear link has been made between babies who grow to above average size at birth and risk of Autism Spectrum Disorder and follows from a study of more than 40,000 child health records in Sweden.

The research, led by The University of Manchester, also confirms earlier research which reported that premature and poorly grown, low weight babies appear more susceptible to the condition.
Autism affects how individuals interact with the world and with other people and there is no known cure. One child in 100 has the condition in the UK according to NHS figures. Researchers believe it has origins in both genetic and environmental causes.

Professor Kathryn Abel, from the University’s Centre for Women’s Mental Health and Institute of Brain, Behaviour and Mental Health, led the research published in The American Journal of Psychiatry this month.

Professor Abel said: “The processes that leads to ASD probably begin during fetal life; signs of the disorder can occur as early as three years of age. Fetal growth is influenced by genetic and non-genetic factors. A detailed understanding of how fetal growth is controlled and the ways in which it is associated with ASD are therefore important if we are to advance the search for cures.
“To our knowledge, this is the first large prospective population-based study to describe the association between the degree of deviance in fetal growth from the normal average in a population of children and risk of ASD with and without intellectual disability. We have shown for the first time categorically that abnormal fetal growth in both directions increases risk of autism spectrum disorder.”

Researchers looked at data from the Stockholm Youth Cohort in Sweden, where early ultrasound dating provides detailed weights of the baby’s progression in pregnancy. Infants and children then also take part in structured clinical assessments of their social, motor, language and cognitive abilities.

The cohort contained records of 589,114 children aged 0-17 in Sweden between 2001 and 2007. Certain child data was removed, including children too young to have a diagnosis for ASD, adopted children and non Swedish or Stockholm County residents, children not born in Sweden and twins.
From the remaining available data, researchers found 4,283 young people with autism and 36,588 who did not have the condition and who acted as the control.

The study found that bigger babies who were born weighing over 4.5kg (or 9lb 14) showed a higher incidence of autism, as did smaller infants who were born weighing less than 2.5kg (5.5lb). A baby who had poor fetal growth would therefore have a 63% greater risk of developing autism compared to normally grown babies. A baby who was large at birth would have a 60% greater risk. This effect was independent of whether or not the baby was born pre or post term.

Professor Abel added: “We think that this increase in risk associated with extreme abnormal growth of the fetus shows that something is going wrong during development, possibly with the function of the placenta.

“Anything which encourages abnormalities of development and growth is likely to also affect development of the baby’s brain. Risk appeared particularly high in those babies where they were growing poorly and continued in utero until after 40 weeks. This may be because these infants were exposed the longest to unhealthy conditions within the mother’s womb.

“We now need more research into fetal growth, how it is controlled by the placenta and how this affects how the brain develops. One of the key areas to research is maternal condition and healthy growth.”

The study was also unique as it was big enough to be able to look at the differences between children who developed ASD with and those without intellectual disability as well as differences between children born pre and post-term (after 40 weeks).

Notes for editors

To view the paper, published in The American Journal of Psychiatry, click . To view the editorial article in the Journal about the research, please click .

The paper was also published in the on 7 June 2013.

Professor Abel is available for interview. To request an interview or for further information, please contact:
Alison Barbuti
Media Relations Officer
Faculty of Medical and Human Sciences
The University of Manchester
Tel: 0161 275 8383
Mobile: 07887 561 318
Email: alison.barbuti@manchester.ac.uk

Research reveals hidden anguish of schoolchildren with autism

Wed, 19 Dec 2012 00:00:00 +0000

Schoolchildren on the autistic spectrum experience worrying levels of mental health difficulties, according to a new study by research psychologists from The University of Manchester.

The findings, published early next year in the Journal of Research in Special Educational Needs, reveals the difficulties endured by many young people on the autistic spectrum, compared with their peers.

Dr Judith Hebron, a specialist in autism research, said: “A good number of children on the autistic spectrum are performing well at school, which makes it very difficult for teachers to spot the degree of anxiety they suffer, especially as many consciously hide it or try to find strategies to deal with it unsupported.

“Schools are such intensely social environments, compounding the worries of children on the autistic spectrum about how other children see them or how to deal with unstructured social situations.

“Any social context is a challenge for them. These young people are also at increased risk of becoming the victims of bullying, making school a constantly challenging environment.

“Many children expend huge amounts of energy trying to appear ‘normal’, but this can lead to intolerable stress levels that may then result in outbursts which are easily mistaken for bad behaviour – especially when it affects other children or family life.”

The study, co-authored with 91ֱ��’s Professor Neil Humphrey, assessed 22 children with autism, 21 children without special education needs, and 23 children with dyslexia. Five young people with autism also took part in interviews.

Prevalence rates for anxiety, depression, self worth, anger and disruptive behaviour were all highest for children with autism, though anxiety was by far the most significant, with 59.1 per cent demonstrating clinical levels.

The research will resonate with the parents and carers of the 70 per cent of all children with autism who attend mainstream schools –representing approximately 1 per cent of all school pupils.

Dr Hebron added: “This is a difficult problem to address as it is often hidden,

“But as children experiencing chronic stress and anxiety are more likely to suffer from mental health problems in the future, it’s vitally important we are aware of these issues and intervene early in order to minimise the risk.

“Many mainstream schools are doing excellent work in supporting and including young people on the autistic spectrum: there are ways to moderate their anxiety.

“It is also possible teach tolerance of difference to other children, but we hope this study will offer support for existing strategies and provide exploratory ideas for new ones.”

Notes for editors

Dr Hebron is available for comment

Mental health difficulties among young people on the autistic spectrum in mainstream secondary schools: a comparative study by Dr Judith Hebron and Professor Neil Humphrey from the University of Manchester is available online to subscribers.

It will be published in the Journal of Research in Special Educational Needs.

For media enquires contact:

Mike Addelman
Press Officer
Faculty of Humanities
University of Manchester
0161 275 0790
07717 881567
michael.addelman@manchester.ac.uk

Brain Awareness Week photo and filming opportunities

Mon, 12 Mar 2012 00:00:00 +0000

1) Pupils find out 'What do psychological scientists do?' Psychological scientists from The University of Manchester will explain their work to local secondary school pupils* at an interactive event on Wednesday 14 March.

200 pupils will take part in activities and talks with researchers from the School of Psychological Sciences, including renowned autism expert Dr Dougal Hare and brain-imaging specialist Dr Daniela Montaldi.

Each speaker will bring along an object from their everyday work, including a rubber hand and a computer game, for the pupils to examine - and will challenge them to guess whose is whose and what they might do with them**.

Dr Karen Lander, one of the organisers of the event, said: "We're keen to engage school children with science and research in an interactive way, and raise their awareness of what the psychological sciences involve."

Co-organiser Dr Ellen Poliakoff added, "The pupils will gain insights into what it would be like to work in this diverse field, which will be useful when making decisions about future study."

The pupils will go home with a goody bag including further information, activities and a brain-shaped stress ball. The event is funded by Research Councils UK as part of National Science Week and Social Science Week.

"What do psychological scientists do?" will take place on Wednesday 14 March in the Stopford Building at The University of Manchester from 1.30 - 4.00pm. Journalists, photographers and film crews are welcome to attend by prior arrangement.

*The pupils will be aged 14 and above and from the following schools:
o St John Fisher Catholic High School, Wigan
o Altrincham Girls Grammar School
o Urmston Grammar School
o 91ֱ�� Grammar School
o Whalley Range High School

** Dr Richard Brown uses the rubber hand to find out about changes in body perception, and Dr Luke Jones found inspiration for his experiments on time perception whilst playing a computer game.

2) School children to build giant brain

Pupils of all ages will work with psychology and neuroscience lecturers, a science communicator and an artist to build a giant model brain at a series of workshops this week.

The project at Altrincham Grammar School for Girls will see the pupils build an outsized brain from chicken wire and plaster, and is designed to demonstrate how social interaction shapes our brains.

Project leader Dr Wael El-Deredy said: "The brain is fundamental to our ability to interact socially, so it's highly appropriate to be building this giant version as a team experience."

Journalists, photographers and film crews are welcome to attend the final workshop on Friday 16 March from 12:30 to 13:30 by prior arrangement. The finished model will also be displayed at the University's Brain Awareness activity day at the 91ֱ�� Museum on Saturday 17 March 2007 from 11.00 - 3.00.

The project is funded by the Economic and Social Research Council as part of Social Science Week.

For further information or to arrange to attend either event please contact:

o Jo Nightingale: 0161 275 8156/jo.nightingale@manchester.ac.uk (Mon - Weds am) or 07717 881572 (Fri)
o Aeron Haworth: 0161 275 8383/aeron.haworth@manchester.ac.uk (Weds pm and Thurs)

For more details on the event at 91ֱ�� Museum on 17 March, please contact Aeron Haworth as above.

Notes for Editors The University will also be holding Brain Awareness Week events for the public at the Asda store in the Eastlands area of Manchester on Monday 12 and Thursday 15 March. Further details are available from Aeron Haworth as above. The University of Manchester (www.manchester.ac.uk) is the largest higher education institution in the country, with 24 academic schools and over 36 000 students. Its Faculty of Medical & Human Sciences (www.mhs.manchester.ac.uk) is one of the largest faculties of clinical and health sciences in Europe, with a research income of around £51 million (almost a third of the University's total research income). The School of Psychological Sciences (www.psych-sci.manchester.ac.uk) was founded in 2004, and comprises the oldest Psychology department in the UK together with Human Communication and Deafness and Clinical Psychology divisions. All were rated 5/5 in the last higher education Research Assessment Exercise.

Health and support services fail deaf children with complex disabilities

Thu, 03 Mar 2011 00:00:00 +0000

Parents of deaf children with complex disabilities are locked in battle with health, social care and education professionals to access vital support and medical care for their child, a report published today (Thursday) has revealed.

The research from The University of Manchester and National Deaf Children’s Society (NDCS) discovered issues including late diagnosis, problems accessing medical treatment, and difficulties in obtaining specialist support. The report, which is the largest of its kind, described some professionals as ‘overwhelmed by the complexity of needs’ and others as treating deafness as a minor condition that can be addressed later in the child’s life.

Dr Wendy McCracken, from 91ֱ��’s School of Psychological Sciences, interviewed 50 families of deaf children with conditions such as autism, Down Syndrome and cerebral palsy which, when combined with their deafness, require more tailored approaches to their individual needs. It is estimated 40% of the total population of deaf children have some kind of additional disability¹. NDCS estimates that 10% of deaf children, approximately 4,500, in the UK have Additional Complex Needs (ACN)².

Nicola Slator is one of the parents interviewed in the study. Her daughter Rebecca, aged 10, has multiple conditions, including microcephaly and scoliosis, and is profoundly deaf. Nicola said: “My biggest frustration is that professionals don’t work together. I spend all my time as a go between, juggling appointments because they don’t work together, when I should be spending more time with Rebecca and my other children. Instead of doctors and teachers focussing only on their area of practice, they need to see the whole child and be willing to work together.”

The report comes ahead of the Government’s special educational needs (SEN) Green Paper, due to be published this month, and urges Government and professionals to proactively work together to deliver the support that children with multiple disabilities desperately need.

NDCS Chief Executive Susan Daniels said: “We are alarmed by the findings of this research which shows services are not geared up to support or care for children who are deaf and have other disabilities. It is particularly shocking to discover the low expectations that some professionals have of these children, often seeing the collection of conditions rather than the child.

“As the number of children with complex needs rises, due to increasing survival rates of children who are born prematurely or suffer a severe illness, it is becoming even more important for services to drastically improve how they support these families. We urge professionals to work with parents to address shortfalls so that deaf children receive the support and care they need.”

The importance of respite care and the value of support networks of other parents were heavily emphasised by the parents interviewed for the report. In response, NDCS is holding its first ever Big Weekend for families and deaf children with ACN from March 4 to 6 in Cheshire, where parents and children can come together and share their experiences as well as accessing specialist support.

For further information on childhood deafness, parents can visit the NDCS website at or call the Freephone helpline on 0808 800 8880. Parents can also access an online forum for parents, , where they can share experiences and provide support to each other.

Ends

Notes for editors

A copy of the full report is published on the NDCS website. A copy is also available on request.

About NDCS:

The National Deaf Children’s Society (NDCS) is the leading charity dedicated to creating a world without barriers for deaf children and young people.
Four babies are born deaf every day and almost all deaf children (over 90 per cent) are born to hearing parents with no experience of deafness.
There are over 45,000 deaf children in the UK.
Parents with concerns about their child’s hearing can contact the NDCS Freephone Helpline on 0808 800 8880 (voice and text) or email

Key findings of the report:

Parents are fighting for access to essential services and support for their child, which is taking an emotional and financial toll on them and their family.
Barriers to these services and some professionals’ low expectations of children with ACN are limiting their ability to fulfil their potential
One in five deaf children with ACN did not have access to a teacher of the deaf
Late diagnosis and treatment of deafness is a common issue
Almost a third of parents reported major delays in medical and technological assessments, such as getting hearing aids, for their children.

Recommendations for professionals and decision makers:

Engage with families to find out how best to meet their needs
Communicate and share information with other professionals caring for the child
Consider all of the child’s needs, not just the aspect of their care they specialise in
Be positive about each child’s future and discuss this with parents

[¹] Holden-Pitt and Diaz, 1988; Stredler-Brown and Yoshinaga-Itano, 1994; Fortnum et al.1996.
[²] Figures taken from a sample of 8,000 families who have registered with NDCS since 2005

For further information contact:

Faith Dawes
Senior Media Relations Officer
NDCS

Tel: 020 7014 1149
Email: faith.dawes@ndcs.org.uk

Or Aeron Haworth
Media Relations
Faculty of Medical and Human Sciences
The University of Manchester

Tel: 0161 275 8383
Email: aeron.haworth@manchester.ac.uk

91ֱ�� conference to discuss 'the Lord of the flies'

Wed, 01 Sep 2010 01:00:00 +0100

Over 350 scientists from around the world are gathering at The University of Manchester for ‘Neurofly’, the 13th conference on Drosophila neurobiology, which starts today and runs until 5 September.

Drosophila is the tiny fruitfly which has been used for a century to unravel the secrets of how genes contribute to the formation and function of the brain and influence behaviour, in both health and disease.

Conference co-organiser Professor Matthew Cobb, at 91ֱ��’s Faculty of Life Sciences, said: “Amazingly, many important discoveries in human behaviour were first revealed in Drosophila. For example, the genes that make our biological clocks “tick” were discovered in the fly and now help us understand “jet-lag” or sleeping disorders.

“This surprising similarity between humans and flies is being explored in a number of presentations at Neurofly, many of which use the fly as a "test tube" for understanding aggression, learning or sleep, as well as neurological disorders.

“From mental retardation to autism, from prion disease to spastic paraplegia, researchers will be showing how the fly is able to cast light on human genetic disorders and help chart the way to potential treatments.”

Co-organiser Professor Richard Baines added: “One of the highlights of the conference will be Professor David Lomas’s talk on using flies to understand Alzheimer’s disease. But it isn’t all so serious. Researchers will also be talking about how the twitchiness of maggot muscles changes with age, how different size flies manage to climb, and addressing one of the age-old questions: are male and female brains shaped differently."

Co-organiser Dr Andreas Prokop said: “Given the past record of Drosophila research, any one of these apparently obscure topics might give rise to important insights into human behaviour and health.”

For more information visit

Notes for editors

Fruitfly image available.

For an image, more information or to arrange an interview with one of the conference organisers, contact Professor Matthew Cobb on 07500 028691 or Media Relations Officer Mikaela Sitford on 07768 980842.

Rare genetic variations of DNA implicated in autism

Thu, 10 Jun 2010 01:00:00 +0100

Losses and duplications of whole chunks of DNA at sites across our genomes are likely to play a role in autism spectrum disorders, suggests a new study published in the journal Nature.

The international research group, which includes members from The University of Manchester, say the findings could lead to the development of new treatments for autism.

“Our results suggest that this type of genetic variation is a significant risk factor in susceptibility to autism,” said Dr Janine Lamb, from the Centre for Integrated Genomic Medical Research at The University of Manchester.

“Identification of these genetic variants is beginning to highlight the biological pathways that are likely to be involved. We hope that this knowledge will lead to improved diagnosis, earlier intervention and better outcomes for individuals affected by autism and their families in the future.”

Autism spectrum disorders are known to have a predominantly genetic basis from twin and family studies, but the genetic changes responsible are varied and remain largely unknown.

Single gene mutations or large rearrangements in chromosomes are responsible for a minority of cases of autism. Some rare mutations in genes are known to be risk factors for the condition, and a range of commonly occurring changes in DNA sequence have been linked to autism but only account for a small proportion of its genetic basis.

Stretches of DNA – perhaps including one gene, perhaps 10–20 genes – are often lost or duplicated in our genomes. Sometimes these genetic variations, called copy number variants, are inherited from parents, while some appear for the first time in offspring. Scientists had wondered if some copy number variants that occur only rarely (in fewer than one in 100 people) might account for a significant proportion of autism’s missing genetic component.

The technology is now available to search for rare copy number variants across the whole human genome. So the Autism Genome Project Consortium – an international collaboration involving researchers from institutions across the USA, Canada and Europe, set out to compare the incidence of rare copy number variants in 996 people with autism spectrum disorders and 1,287 unaffected people, all with European ancestry.

They found that people with autism spectrum disorders had on average 19% more copy number variants that disrupted genes than in the control group.

Within the copy number variants that were found, the researchers were able to identify where they had been inherited and where they had newly emerged by looking at parent-child transmission.

Many of the lost or duplicated DNA chunks occurred in genetic regions already implicated in autism. But they were found in many new gene regions too, suggesting these genes offer new biological pathways that might be involved in autism spectrum disorders.

The scientists also looked at the functions of the genes interrupted by the copy number variants. The team found that genes involved in both neural cell development and signalling pathways were unusually common.

Many of these affected genes are also thought to play a role in other neurodevelopmental disorders and these results fit with what is being discovered in other conditions. Rare copy number variants have already been shown to play a role in learning disability, and there seems to be some overlap in the genes implicated in both autism and learning disability. There may even be some overlap with other conditions such as epilepsy and schizophrenia. It is becoming clear that affected genes and pathways can lead to very different outcomes in different people.

Tests for the presence of copy number variants are already available to help the diagnosis of learning disability. Where children are thought to have a learning disability, genetic tests may be done that first look under the microscope for abnormalities in chromosomes then DNA microarrays might be used to search for copy number variants. The tests can confirm a diagnosis and help guide the care and support that is then provided. Genetic counselling for the children and their families is always available.

The team in 91ֱ�� are now carrying out a pilot study to identify additional rare mutations outside of genes that also increase the risk of autism spectrum disorders.

Ends

Notes for editors

Autism spectrum disorders are a group of developmental disorders that emerge in early childhood. The disorders are characterised by difficulties in social interaction, communication, and understanding other people’s emotions and behaviour. The estimated number of children under 18 in the UK with an autism spectrum disorder is 133,500, according to the National Autistic Society.

The Autism Genome Project (AGP) is an international autism genetics research consortium, consisting of 120 scientists from more than 60 institutions and representing 11 countries. The AGP is co-funded by Autism Speaks, the Medical Research Council, Autistica, Canadian Institutes of Health Research, Health Research Board (Ireland), Genome Canada and the Hilibrand Foundation. For further details visit:

The paper ‘Functional impact of global rare copy number variation in autism spectrum disorder’ by Dalila Pinto and colleagues is published online in the journal Nature with an embargo of 18:00 UK time on Wednesday, 9 June, 2010.

For further information contact:

Aeron Haworth
Media Relations
Faculty of Medical and Human Sciences
The University of Manchester

Tel: 0161 275 8383
Mob: 07717 881563
Email: aeron.haworth@manchester.ac.uk

Moving study to shed new light on the loneliness of autism

Mon, 01 Dec 2008 00:00:00 +0000

University of Manchester scientists are investigating problems controlling movement in people with autism, now thought to be a cause of the social interaction difficulties that they face.

When we observe another human being doing something, such as picking up a cup, it automatically activates our own movement or ‘motor’ system, and this is one way of us beginning to understand what other people are trying to do. However people with autistic spectrum disorder have problems with sensory motor integration – that is, with bringing information from the senses to their motor system.

Kelly Wild and Dr Emma Gowen at the Faculty of Life Sciences, along with Dr Ellen Poliakoff at the School of Psychological Sciences, are investigating these problems further using movement sensors and eye tracking devices on volunteers who are being asked to observe and copy the actions of others.

Kelly explained: “Motor control problems are a lesser known aspect of autistic spectrum disorder – people often think about the social aspects that autistic people face – but motor control problems may be one of the causes of the social problems. We need to do more research to establish that and the level of its impact.”

Autistic spectrum disorder, which includes autism and Asperger syndrome, is a range of disorders that cause communication and emotional problems. To people with these disorders the world can appear chaotic with no clear boundaries, order or meaning. The condition can vary from very mild, where the person can function as well as anyone else around them, to so severe that they are unable to take part in normal society. It is believed that around 1 in every 100 people have autistic spectrum disorder, with over 130,000 children and over 500,000 adults in the UK alone.

In the 91ֱ�� study, volunteers with high functioning autism or Asperger Syndrome will carry out a series of simple tasks, including watching various short films of movement sequences then imitating them or making decisions about them. They will also trace and copy pictures with a pencil that has a movement sensor attached to it. All the volunteers’ movements will be recorded with state-of-the-art motion and eye tracking equipment during the tasks, which will last from a few minutes to half an hour.

The volunteers, whose involvement will remain strictly confidential, will receive expenses and written feedback from the study, and will also be able to ask questions about their condition.

The team will be publishing their results in two years. The paper will be available on the National Autistic Societies’ website.

Anyone who would like to volunteer must be aged 18-45 years with English as their first language. Anyone who wishes to sign up or get further information can contact Kelly Wild on 0161 306 0470 or kelly.wild@manchester.ac.uk.

Notes for editors

For more information or to arrange an interview with Kelly Wild or Emma Gowen, contact Media Relations Officer Mikaela Sitford on 0161 275 2111, 07768 980942 or Mikaela.Sitford@manchester.ac.uk.

The study has been reviewed by the Faculty of Life Sciences Research Ethics Committee 07153 and the NHS Research Ethics Committee 07/H1011/71.

The University of Manchester's Faculty of Life Sciences (FLS), with more than 1000 people involved in research, 1700 undergraduate students and an annual total budget of £65 million, is one of the largest and most successful unified research and teaching organisations of its kind in Europe. See

Researchers at Eye and Vision Sciences, at FLS, work on basic science and clinical projects to improve our understanding of structure and function of the human visual system, and to translate new knowledge into useful clinical tests. Research topics encompass function and dysfunction, visual optics, ocular imaging, psychophysics and electrophysiology and low vision.

The School of Psychological Sciences was founded in 2004, and comprises the oldest Psychology department in the UK together with Human Communication and Deafness and Clinical Psychology divisions.

Results of largest ever genome scan for autism out

Fri, 16 Feb 2007 00:00:00 +0000

The genomes of the largest collection of families with multiple cases of autism ever assembled have been scanned and the preliminary results published in Nature Genetics (February 18, 2007). They provide new insights into the genetic basis of autism.

The research was performed by more than 120 scientists from more than 50 institutions representing 19 countries. In the UK, work was carried out at The University of Manchester, the Institute of Psychiatry at King's College, London and the University of Oxford.

The international collaboration started in 2002 when researchers from around the world decided to come together and share their samples, data, and expertise to facilitate the identification of autism susceptibility genes. They formed the Autism Genome Project.

The world-wide consortium of scientists made the most of its large sample of 1,200 families, using 'gene chip' technology to look for genetic similarities in autistic people. The AGP also scanned DNA from these families for copy number variations (CNV), or sub-microscopic genomic insertions and deletions that scientists believe might be involved with this and other common diseases.

The innovative combination of these two approaches implicates a previously unidentified region of chromosome 11, and neurexin 1 - a member of a family of genes believed to be important in the contact and communication of neurons. The neurexin finding in particular highlights a special group of neurons called glutamate neurons and the genes affecting their development and function, suggesting they play a critical role in autism spectrum disorders.

The first phase of the effort - the assembly and scanning of the largest autism DNA collection ever - was funded by Autism Speaks, a non-profit organisation dedicated to increasing awareness of autism and raising money to fund autism research, and the US National Institutes of Health.

Phase two of the project, which will build on the success of the linkage scan, is now being launched. It represents a £7.44 million investment over three years by Autism Speaks, the UK Medical Research Council (MRC), the Health Research Board of Ireland (HRB), Genome Canada and partners, Canadian Institutes for Health Research (CIHR), Southwest Autism Research and Resource Center (SARRC), and the Hilibrand Foundation. This unique combination of international, public and private partners funding a consortium of clinicians and scientists is unprecedented in the field of autism research.

Professor Tony Monaco from the University of Oxford's Wellcome Trust Centre for Human Genetics led the funding bid, and the International Molecular Genetic 91ֱ�� of Autism Consortium (IMGSAC), led by Professors Monaco and Anthony Bailey (both University of Oxford), is a major contributor to both phases of the Autism Genome Project. The 91ֱ�� team for phase 2 includes autism genetics expert Dr Janine Lamb, who had a central role in IMGSAC's genetic analysis, statistician Professor Andrew Pickles who is a leading international researcher in the autism field, and child psychiatrist Professor Jonathan Green, who led the clinical fieldwork in 91ֱ��. The work links to a wider significant programme of autism research in 91ֱ�� led by Professors Pickles and Green; including national and international developmental studies and trials of autism interventions.

Professor Green said: "Autism is a very difficult condition for families - communication is taken for granted by parents of healthy children but is so greatly missed by those with autistic children. We are working now in 91ֱ�� to investigate the basic science and develop and test new treatments for the condition. We hope that these exciting results may represent a step on the way to further new treatments in the future."

Autism Speaks co-founder and board chair, Bob Wright, said: "The identification of susceptibility genes will provide profound new insight into the basis of autism offering a route to breakthroughs in new treatments in support of families."

For more information or to arrange an interview please contact:

University of Manchester Media Relations Officers Jo Nightingale or Mikaela Sitford on 0161 275 8156 or 2111 (for Dr Janine Lamb, Professor Jonathan Green or Professor Andrew Pickles)

University of Oxford Press Officer Ruth Collier 01865 280 532 (for Professor Anthony Monaco or Professor Anthony Bailey)

Editors Note:

Autism is a complex brain disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by extreme behavioural challenges. Autism Spectrum Disorders are diagnosed in one in 166 children in the United States, affecting four times as many boys as girls. The diagnosis of autism has increased tenfold in the last decade. The Centres for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.

Speakers: Dr Janine Lamb (University of Manchester) will discuss the genetics of the study. Professor Jonathan Green (University of Manchester) will discuss the clinical implications of the study, and Professor Andrew Pickles (University of Manchester) will discuss its links to other autism research. Professor Anthony Bailey (University of Oxford) is also available for comment.

The International Molecular Genetic 91ֱ�� of Autism Consortium (IMGSAC) was established in 1994 and includes scientific researchers and clinicians from a number of European countries and the United States. It is led by Professors Tony Monaco and Anthony Bailey at the University of Oxford. Professor Bailey previously led from the Institute of Psychiatry (based at King's College, London) before moving to Oxford. The Consortium has generated an extensive collection of families with autism, and has led the field using sophisticated technology to examine these families for genes underlying autism susceptibility. The Consortium is funded in part by project grants from the Medical Research Council (UK), The Wellcome Trust and The NLM Foundation.

The University of Manchester's Faculty of Medical and Human Sciences boasts an annual research income of £51m, almost a third of the University's total research income. There are 7,600 undergraduate students and 1,600 postgraduates on award-bearing courses. More students graduate each year from the School of Medicine than from any other medical school in the UK. For more information see

The Institute of Psychiatry is the largest academic community in Europe devoted to the study and prevention of mental health problems. It provides post-graduate education and carries out research in psychiatry, psychology, and allied disciplines, including basic and clinical neurosciences. The Institute, world renowned for the quality of its research, became a school of King's College, London, in August 1997.

Oxford University's Medical Sciences Division is one of the largest in Europe. It represents almost one third of University income and expenditure and two thirds of external research income. It has 2,500 staff, a budget of £200m and over £107m in external research income.

The Wellcome Trust Centre for Human Genetics is funded by the Wellcome Trust and based at the University of Oxford. The scientific objective of the Centre is to explore all aspects of the genetic susceptibility of disease. The Centre houses multi-disciplinary research teams in human genetics, functional genomics, bioinformatics, statistical genetics and structural biology. See .

The Medical Research Council (MRC) is dedicated to improving human health through excellent science. It invests on behalf of the UK taxpayer. Its work ranges from molecular level science to public health research, carried out in universities, hospitals and a network of its own units and institutes. The MRC liaises with the Health Departments, the National Health Service and industry to take account of the public's needs. The results have led to some of the most significant discoveries in medical science and benefited the health and wealth of millions of people in the UK and around the world.

Autism Speaks is dedicated to increasing awareness of autism spectrum disorders, to funding research into the causes, prevention, treatments and cure for autism, and to advocating for the needs of affected families. It was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Vice Chairman and Executive Officer, General Electric. Autism Speaks has merged with both the National Alliance for Autism Research (NAAR) and Cure Autism Now (CAN), bringing together the nation's three leading autism advocacy organizations. For more information see