Category Archives: Research

Why timely diagnosis of autism is important

Tracy Elliott, our Head of Research and Information explains why timely diagnosis of autism is important and tells us her family’s story:

Tracy and her family

Tracy and her family

“My daughter has a diagnosis of autism. The journey to diagnosis was traumatic and bewildering for my family. Aged 15 her self harming behaviour, driven by depression and anxiety, had become so severe she was a danger to herself and was admitted to a child and adolescence psychiatric unit five hours drive from our family home. She remained there for over 3 months.

Previously, unknown to us and for reasons not understood by herself, she had taught herself to copy and mimic the behaviour of her peers. From age 6 she knew she was different, she did not know why. She just felt something was very wrong and she had to hide ‘her weirdness’. Living in fear of ‘being found out’. At first this wasn’t so hard but as adolescence arrived it became impossible. She became suicidal.

The psychiatrist who saw her when she got to CAMHS had professional expertise and personal experience of autism (this isn’t always the case) and picked up on the autism, something no one else suspected as she did not fit any of the stereotypes. Her diagnosis followed within 6 months. The diagnosis explained to my daughter why she had the experiences she had, that she wasn’t ‘weird’, but had a neurological condition that meant her brain worked differently to that of most of her peers.

Exploring the diagnosis demonstrated that difference brought strengths as well as difficulties. Of course difficulties remain but they are understood, can be rationalised and coping strategies put in place. Things are no longer ‘impossible’ but ‘difficult at times’.  For my daughter her diagnosis came late. Mental health problems already entrenched and more difficult to address.

I was in a meeting recently that included senior medical professionals where a comment was made that early autism diagnosis was less of a priority to the NHS because without an effective intervention to offer there was less urgency required. While understanding the logic I was disappointed and saddened. It made me realise that people like myself and my daughter, who speaks publicly about her experiences, have to speak out. Key decision makers need to understand that even without an intervention an earlier diagnosis would have helped my daughter understand that she is not ‘weird’ but has a valuable contribution to make to her family, her friendships and society. That she is valuable not weird.

Earlier diagnosis could have limited the mental health problems that have plagued her adolescence and early adulthood. Earlier diagnosis would have made a difference to her and our family. Early diagnosis would have saved money on acute mental health services. As for intervention, well firstly it’s not all about interventions, understanding and support can go a long way. Secondly there are interventions that help, some currently being researched by Autistica, however accessing them is difficult (but that is a whole other discussion). My daughter did, eventually, receive valuable and effective intervention and it has helped. You can read my daughter’s story here.

Unacceptable delays for autism diagnosis exist across the UK. That’s for children who are already suspected of having an autistic spectrum disorder. For those children that don’t conform to stereotype, girls in particular, it’s even longer with some never getting a diagnosis. In my family’s experience diagnosis does matter, it does make a positive difference and that’s why I think timely diagnosis of autism is important”.

We want your stories about your family and getting an autism diagnosis. Do you think early diagnosis is important? What are your experiences?

Please send your stories to researchinfo@cerebra.org.uk.

Research and Information Request Service

In a survey we carried out in 2016 (with 1937 respondents), less than 41% of parents receive written information when they get a diagnosis for their child. In addition many families felt that the lack of reliable, accessible and impartial information hampered their ability to make informed choices for their family.

So as a parent or carer of a child with a brain condition you may be keen to look for more information about your child’s condition, therapies, treatments or other services on the internet. While the internet provides a huge amount of information, much of which is freely available and easy to access, not all websites give reliable information.

Our aim is to equip you with the knowledge, skills and confidence you need to do your own research, appraise the information you find and make your own decisions about what’s right for your family.

Parent Guide

As a first step our guide on Finding and appraising information and evidence on the internet makes some suggestions to help you search efficiently on the internet, and to appraise whether the websites you find present reliable and unbiased information.

Parent Research Requests

If you need further help, we will be happy to help. One of our Research Officers can help you frame your question in a way that will provide the evidence you are looking for. We can give advice on search strategies and key websites to explore as well as signposting you to sources of reliable, impartial information. Please get in touch with georgiam@cerebra.org.uk for more information on this service.

Your requests help others

Whatever information you are looking for, the chances are that it will also be useful to other families.  We use a systematic process for dealing with your research requests that allows us to identify and prioritise the issues that are concerning you. Where reliable evidence based information already exists we produce brief fact sheets signposting to it. Where such information is lacking, or does not meet your needs, we commission and produce evidence based guides for parents.

We have a range of Guides for Parents and factsheets that we have developed because of your questions. All of our guides are covered by The Information Standard, a recognised quality mark, which indicates that our information is accurate, accessible, impartial, balanced, based on evidence and well-written. Our guides have received excellent feedback with some recently being highly commended by the British Medical Association.

If you would like more information about our new Research and Information Request Service, please get in touch with georgiam@cerebra.org.uk

Please note that this service is no substitute for medical opinion or advice. We aim to provide information that will give you the information you need to help you make informed decisions about the care of your child in consultation with the medical professionals supporting your child.

New students join our LEaP Project

Group photo copyOur Legal Entitlements and Problem-Solving (LEaP) Project at the University of Leeds is committed to providing practical solutions to the legal problems families face. Our lead researchers at the School of Law, Professor Luke Clements and Sorcha McCormack, have been busy recruiting students at the University to work on two new projects:

The Cerebra School Transport Research Project

Disabled children who can’t reasonably be expected to walk to school because of their special educational needs, disability or mobility problems have a statutory right to transport. Although councils are under a legal duty to provide this assistance, LEaP is often contacted by families who have been improperly refused this support. The main aim of the School Transport Project is to assess whether the school transport information on English local authority websites is fit for purpose.

The Cerebra Disabled Facilities Grants Research Project (DFG Project)

Disabled children and their families are legally entitled to a grant to pay for necessary adaptations to their home to improve accessibility and independent enjoyment of their surroundings. These are known as Disabled Facilities Grants (DFGs) and are usually for sums up to £30,000. The main aim of the DFG Project is to assess the cost effectiveness of DFGs and the wider impact adaptations have on the disabled child and their families.

The LEaP project is all about making research relevant to families in their everyday lives and the students will be publishing reports on their research in the new year.

Full details of all the legal help available from Cerebra as well as details of the research programme at the School of Law can be found here.

Two Cerebra Parent Guides Highly Commended by BMA

Two of our parent guides have been Highly Commended at the 2016 British Medical Association (BMA) Patient Information Awards. We were delighted to receive the awards for our Parent Guides on ‘Returning to School: A teacher’s guide for pupils with brain tumours, during and after treatment’ and ‘Anxiety: A Guide for Parents’ at a ceremony on 12th September.

We are determined to give every family that includes a child with a brain condition the chance to discover a better life together. By listening and working with families we are able to use that information to inspire the best research and innovation before helping them to put the knowledge into practice so that they can discover a better life together.

The British Medical Association’s Patient Information Awards were established to encourage excellence in the production and dissemination of accessible, well designed and clinically balanced patient information.

Tracy Elliott, Head of Research at Cerebra said: “Parents regularly tell us that they have difficulty in getting reliable information on their child’s condition, especially for those conditions that are less common. Providing clear accessible information that translates research into practical support and advice for parents is a priority for Cerebra. We are delighted to receive BMA recognition for our work”.

We produce a range of Parent Guides on a variety of topics which are available free of charge from our website. As a certified member of the Information Standard since 2013, parents and professionals can be confident that the health and social care information we produce is of the highest standard.

Returning to School Guide

The ‘Returning to School’ guide is intended to help teaching professionals, as well as hospital oncology paediatric departments and parents and carers, to support a pupil with a brain or spinal tumour who may be absent from school for some time, or may have sporadic attendance with a very serious illness. It explains what the pupil may be going through both medically and psychologically and offers practical strategies for ensuring supportive reintegration back to school. Suggestions are given for how teachers, assistants and SENCOs can provide sustained and targeted support for pupils who face extended treatments, devastating long term side effects or an uncertain future.

The full guide is supported by a Facstsheet pinpointing strategies to use where memory and cognition may be impaired, and two infographics on ‘What to do if a child is diagnosed with a brain tumour’ and ‘What to do if a pupil with a brain tumour becomes palliative and may die’.

A number of prominent health professionals from The Royal Marsden NHS Foundation Trust were involved in developing this resource, namely: Dr Lesley Edwards, Consultant Clinical Psychologist; Dr Lynley Marshall, Oak Foundation Consultant in Paediatric Oncology Drug Development; Gabriella Haeems, Assistant Psychologist. The resource was reviewed by Dr Susanna Waern, Principal Clinical Psychologist.

Anxiety Guide

Our ‘Anxiety: A Guide for Parents’ was developed to give up to date information on how to spot the signs of anxiety and anxiety disorders and examine what can be done. Part one describes the common signs of anxiety and specific anxiety disorders. Part two describes the ways professionals assess anxiety in children with intellectual disability, and part three gives guidance on helping your child reduce feelings of anxiety and gives some examples of specific disorders associated with anxiety.

The resource was written by Dr Jane Waite, Postdoctoral Research Fellow at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham; Dr Hayley Crawford, Research Associate at the Centre for Research in Psychology, Behaviour & Achievement at Coventry University; Rachel Royston, PhD student at the University of Birmingham. The guide was peer reviewed by Professor Chris Oliver of the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham.


 

These publications will now be held by the BMA library and recommended for parents and professionals. Cerebra were one of the smallest charities recognised by the BMA in this way. Our publications will sit alongside resources developed by large well established charities such as Marie Curie, Macmillan Cancer Support, The Children’s Trust and The British Heart Foundation, as well as resources developed by various NHS Trusts. Our thanks go to everyone involved in these projects.

The full range of Cerebra guides can be downloaded free of charge from our website.

Living with Hemiplegia and Epilepsy

PoppyWe are asking for young people to write about their experience of growing up with and living with a disability to help us challenge negative perceptions and promote a wider understanding of different conditions. In this article eleven year old Poppy tells us her story.

“My name is Poppy and I have left-sided Hemiplegia and Epilepsy.  For people who don’t know what I have I will explain. Left-sided Hemiplegia means that you have a weakness on one side. Sometimes my arm does strange things. I use my left hand for steadying.  I also pick up the dice with my left hand when Mum and I are playing games. But otherwise I have difficulty using my affected hand and arm. I wear a lycra arm and hand splint to help stop my arm and hand from going everywhere.

My left leg has a high tone and that makes walking difficult. My left leg is also shorter than the right so I have a heel raise on my shoe. I wear a splint otherwise I cannot walk.

I had some surgery a few years ago because I could not walk at all then, because my foot was at an odd angle. I use a manual wheelchair sometimes if I get tired. I will be using a powered wheelchair around my new secondary school because it’s really big.

The type of Epilepsy I have is Focal Seizures. They are boring because you have to sit and wait for them to go away. This is what I think I look like.

I have to take medication twice a day but I still have seizures. My seizures make me feel woozy and I can’t think very well at school. Sometimes seizures upset my sleep and am awake during the night for hours so I am tired the next day.  My tummy feels odd too when I am having seizures and I go off food. I feel unwell for days before and after my seizures.

I like playing tennis with my Mum, which is good physiotherapy. I also have an adapted trike which I try to ride every morning before school, if I am feeling well enough. I love swimming but I haven’t been able to go for a while because of my seizures. I haven’t been able to attend my drama or karate clubs either because of feeling unwell. My seizures mean I miss out on lots of things. They are really annoying.

I was two when I got left-sided Hemiplegia, luckily I can’t remember anything. I was very poorly, and I could have died.  That is what Mum says anyway. I had E-coli and had to stay in hospital for seven weeks.

I got my Epilepsy when I was eight, when puberty started. So Mum thinks that my Epilepsy was triggered by puberty (which I agree with). I hope that means I will grow out of it. I really want to drive when I am older but if I still have seizures I won’t be able to.

I changed primary schools recently because I was having problems with friendships. It had been going on for a while. It made me feel like I was invisible. Now I am at a new school and it is better. I have nice friends. But I am told I am behind a lot and I need to catch up which stresses me out. Mum had a talk with school about avoiding saying I am behind because anxiety can trigger my seizures.

Hemiplegia doesn’t just affect my body though, it also has hidden effects – I can have difficulty processing information and with remembering. When I have seizures it affects these two aspects even more. Mum says I repeat myself a lot and get confused.

I have lots of hospital appointments and see lots of doctors and professionals. It’s really annoying. When they talk about surgery it upsets me and I feel worried.

I get up at 6a.m. every morning because I have a lot to do. I do daily physiotherapy and Occupational Therapy before I go to school and I practice washing and getting dressed, which takes a long time. I get really tired.

When I grow up I’d like to be an author. I’d like to have a family and be happy.”

If your child would like to write something for us we’d love to hear from you. Please contact Emma Thomas on emmat@cerebra.org.uk.

Why we need more fathers to take part in research

Mikeda Jess from The Cerebra Family Research Group at the University of Warwick explains why they need more fathers to take part in research.

“Research with families of children with disabilities contributes to a greater understanding of their experiences and the factors that have an impact upon their lives. Traditionally, when researchers make a call for families to take part in research it is often mothers that respond, completing surveys and answering questions about their child and family life.

Even in modern times, it is mothers who often assume the primary care-giving role and so they are well placed to speak on behalf of their family. Mothers are usually a fountain of knowledge regarding their child’s strengths, difficulties, and daily challenges and can talk about their family as a whole too. Mothers have made a major contribution to research and to our understanding of families of children with disabilities. Thank you!

Although sometimes they are, mothers are not usually the only members of a family living with a child with disability. There are often other children (siblings), another parent (perhaps a father), and extended family members (such as grandparents, step-parents, or aunts and uncles). In this article, our focus is on fathers.

Fathers often play a significant and distinct role in the lives of their children, but theirs is a significant voice often missing from family research. What this means is that we actually know very little about fathers’ perspectives and whether their experiences are similar to or different from those of mothers.

What do we know from research so far about fathers and mothers and whether they have similar or different experiences? Researchers that have included fathers have found (unsurprisingly) that they are different to mothers. For example, fathers tend to report fewer problems in relation to their psychological well-being than do mothers in families of children with disabilities. Fathers report less stress, depression and anxiety.

Why might fathers of children with disabilities report fewer psychological difficulties than mothers even within the same family? One answer is that across the whole population men/fathers tend to report fewer psychological difficulties than do women/mothers. Although this reminds us that families of children with disabilities are in many ways just like other families, it actually doesn’t explain why this difference is there.

There may be some additional clues in research with families of children with disabilities about why fathers report fewer psychological difficulties than mothers. For example, many mothers give up paid work to care for their child with disability whereas many fathers stay in work. Perhaps fathers have the advantage of more social contact with work colleagues and the benefit of a role outside of the home that gives them an additional sense of worth? In addition, mothers typically (though not always) perform most of the care-giving tasks for their child with disability. Thus, the strain of this work and perhaps the difficulties of dealing with (for example) any significant child behaviour problems, probably falls more onto mothers than fathers.

In the research of the Cerebra Family Research Group at the University of Warwick, we have also looked at families from a systems perspective. This means that we are interested in how the different members of a family affect each other. From this perspective, it is not just the child with disability that might have an impact on other family members, but family members may affect the well-being of the child with disability and impact on each other too. For example, in some research studies of families of children with autism we have found that fathers’ psychological well-being was more closely associated with the mother’s depression than it was with their child with autism’s behaviour problems. In contrast, mothers’ well-being was associated with both the father’s depression and their child’s behaviour problems. Again, this shows that fathers’ experiences can be quite different to those of mothers in families of children with disabilities.

Differences between mothers and fathers are evident, but our knowledge on why exactly that is remains limited. It is clearly very important that fathers get more involved in research. First, the voice of fathers is valid but often missing. Fathers offer an insight into their family life that is equal, but different, to other members of their family. Second, as researchers we are just as interested in the well-being and experiences of fathers as we are in the well-being and experiences of mothers. We want to know how best to support the men too!

Recently, we have launched the Cerebra 1,000 Families Study. We want to hear about the experiences of families raising a child with learning (intellectual) disabilities including children who also have autism. For the reasons outlined in this article, we are very keen to hear from two adults from the same family, ideally a mother and a father. People having an additional parental caregiving role in families (apart from the mother that is) are not always fathers and so grandparents, step-parents and adult are also welcome to participate in our study. Our aim is to collect information from 1,000 families. So far we’ve had a great response so a big thank you to all who have taken part.

We need to hear from fathers too and from more families! If you have already taken part and you have a partner or any other family member who helps you take care of your child please do encourage them to take part in the study. You can find the survey online or alternatively request a paper copy. Follow us on Twitter and become our friend on Facebook.

Get involved in making this the largest UK study ever of families raising a child with a learning disability so that there is a better understanding of families like yours.”

Find out more about the project here

Disabled Facilities Grant – Arthur’s Story

disabled facilities grants

Public bodies in the UK have certain duties to provide health, social care and other services for disabled children. Sometimes, however, families can experience difficulties in accessing these support services. Our LEaP Project team aims to provide free legal advice to families who need help getting the right support for their children.

The project publishes an annual round-up of some of the cases the project has helped with, called a Digest of Opinions. One of those cases is that of Arthur whose parents asked for help concerning a disabled facilities grant.

Arthur is 3 and has Autism, Global Development Delay (GDD) and a range of associated, complex medical conditions. Arthur has undergone various medical assessments at a children’s hospital and the clinicians have stressed the need for adaptations to Arthur’s home; in particular to his bedroom. Arthur’s parents requested an assessment from the local authority to enable the adaptations to be undertaken. The local authority advised that there is a standard delay of six months before assessments can be undertaken and an even lengthier delay in completing any works.

The legal opinion provided by the Project explains that the local authority is under a duty to assess within a reasonable time and to provide disabled facilities and adaptations (if they are necessary) within a reasonable period. Interim support should be provided, pending the assessment and provision of facilities and/or adaptations.

The full case Report can be found on page 4 of the Digest of Opinions. All the young people’s names have been changed. The opinions are a statement of the law and policy at that time – it should be remembered that the law does change.

LEaP is an innovative problem-solving project that helps families of children with brain conditions cope with the legal barriers they face. We listen to families and help them get the knowledge they need to access health, social care and other support services. We identify the common legal problems that prevent families getting access to services and we develop innovative ways of solving those problems. We aim to reach as many families as we can by sharing our solutions as widely as possible.

Read the Project Guidelines to find out more about the type of legal problems we can help with. If you would like to ask for support from the project please fill in the Online Request Form. If you would like further information, please contact us at probono@cerebra.org.uk or on 01267 242582.

New look for Cerebra’s Legal Advice Project

We are launching a new look for our Legal Advice Project which provides practical solutions to the legal problems families face.

Our Legal Entitlements Research Project has been going from strength to strength since it started in October 2013 and we’ve learned a lot about the problems parents face in getting access to services for their children.

The past few months have been a particularly eventful time for the project. Professor Luke Clements, who runs the scheme, recently moved from Cardiff University to a new post as Professor of Law and Social Justice at the University of Leeds. We’re delighted that the project will continue under Professor Clements’ direction at Leeds, which has a pioneering Centre for Disability Studies (CDS), bringing together scholars from a range of academic disciplines across the University. You can read more about the University’s ground-breaking work in a Disability News Service article. We’re grateful to colleagues at Cardiff University for all their hard work and commitment in establishing the project and we look forward to having other opportunities to work together again in future.

We’ve also welcomed a new Research Assistant to the team at Leeds, Sorcha McCormack, who will be working with Professor Clements to develop the project.

In light of these developments, we feel that this is the perfect time to relaunch the project with a new name – the Legal Entitlements and Problem-Solving (LEaP) Project. We’re committed to providing practical solutions to the legal problems families face and we wanted our new name to reflect our problem-solving approach. The project is all about making research relevant to families in their everyday lives.

We’ve also launched a new look website, with links to our Problem-Solving Toolkit, template letters, parent guides and other resources. We aim to add more resources to the site as the project develops. Our goal is to help parents get the legal information they need to address problems in getting access to services.

If you want to learn more about the scheme, have a look at our updated Project Guidelines. If you’d like to ask for help, please fill in our online form.

We’re always looking for new ways of sharing legal information with with families – if you have any suggestions, please contact us at probono@cerebra.org.uk.

Dr Eduard Gratacós – Why health starts before birth

Dr Gratacos

Our research team at the University of Barcelona looks at identifying deviations in foetal brain development as early as possible to help prevent and/or minimise childhood disability.

Dr Eduard Gratacós explains his journey into research and why he believes that health starts before birth:

“I was trained in Obstetrics & Gynecology in the early 1990s. Soon after starting my medical residency, I found two new worlds I was not aware of, the fetus and research. Two discoveries that changed my ideas about what I wanted to be in my professional life.

Concerning fetal life, I had always thought that Obstetrics was just helping women to deliver. It struck me to realise that inside the mother there was the infinite world of another patient. Twenty-five years ago this concept was still quite new. Ultrasound had just revolutionised pregnancy follow-up. The mystery of what was happening inside the womb, hidden for all the history of medicine and humanity, was now becoming visible, and in real time! We were just in the beginning, but it was so amazing to think about the fetus as a patient, just as a child or an adult was. This notion impressed me so profoundly that I decided to dedicate my career to fetal medicine.

Research was my second discovery. During medical school, my ideas about me in the future were of a surgeon spending most of his day performing complicated operations. Just a few weeks after I became a resident, I started collaborating in research projects, and this quickly transformed the way I saw things. I suddenly realised that medicine existed thanks to research. The concept that you could create new knowledge that could eventually change the lives of people was amazing. It seems so obvious but you can study medicine for years and rarely think in these terms. Within a few months I was completely decided to dedicate my professional life to research.

So I ended up as a clinical researcher in fetal medicine. I first did my PhD in Barcelona and then moved to Belgium for a few years, where I had the privilege of joining one of the groups that pioneered fetal surgery in the world. When I came back to Spain in the early 2000’s I started a fetal medicine and surgery program. Over these years, we grew from a very small group of enthusiastic young people to a renowned international research centre with more than 75 people and one of the greatest scientific output in fetal medicine. I think our main findings can be summarised in one sentence: health starts before birth. The way our brain and heart will work during our lives is largely influenced by the life conditions in our mother’s womb. Pregnancy complications like preterm birth or fetal growth restriction may affect as much as one in ten pregnancies, and these fetuses and future children will be more prone to suffer neurodevelopmental and other health problems. We are looking for ways of reducing the burden of these pregnancy complications.

We have been supported by Cerebra for the last 13 years. We first demonstrated how children born preterm or with growth retardation had more neurodevelopmental problems. We later showed that ultrasound and magnetic resonance imaging were useful to understand how these problems occurred, and could help to identify those fetuses and babies at highest risk. Some of our research findings have been incorporated to current clinical practice. For instance, most medical societies recognise that brain Doppler must be used to identify and timely deliver fetuses with late-onset growth restriction. This change in clinical practice may benefit thousands of women in the UK, and hundreds of thousands in Europe and the world. In our current Cerebra research program we are investigating interventions that could protect the fetal brain and limit the consequences of brain injury. We also hope to demonstrate how maternal well-being is related with fetal and child neurodevelopment, and how we could provide tools to foster healthy brain development in utero.

Disease is part of nature. We as humans have the privilege and the capacity of investigating disease to understand it and trying to counter its effects on individuals. It may be hard for those suffering a disease to learn that research is so expensive and that it often takes a long time to achieve results that effectively improve things in “real life”. However, when we see where we are every ten years, we realise the impact of research. We must continue on this enterprise, for us and for the future generations.

Cerebra invests large amounts in promoting research and it does that in the most effective manner. With a policy of funding ambitious research programs for long periods, Cerebra allows researchers to undertake projects with a much higher chance of leading to real improvements. I think all Cerebra members, associates and supporters must be extremely proud and reassured that they are investing their money wisely and in a way that will change the life of many people in the future.

Cerebra has been with me for a substantial part of my research career, and I am extremely grateful and honoured for that. I hope that we can still do many important things together in the future. Thank you very much”.

Dr Gratacós is Professor of Obstetrics and Gynaecology and Director of the BCNatal national and international referral centre in Maternal Fetal Medicine.

This article is the latest in a series written by our Academic Chairs:

 

Chris Oliver – My Journey into Research: the Boy at the Pillar

Professor Chris Oliver explains his journey into research as well as the pioneering work of the Cerebra Centre for Neurodevelopmental Disorders.

“In 1981 I was training to be a clinical psychologist at the University of Edinburgh when the seminal documentary “Silent Minority” was aired on ATV. The content was a damning portrayal of abuse and inadequate service provision for children and adults with intellectual disability and was to prove more influential in driving reform than any government report of the day or since. One image in the documentary that has remained with me to this day was of a young boy tied to a pillar on the ward of a Victorian long stay hospital. The reason given for him being tied was that he banged his head very severely and this was how his behaviour was contained. After watching the documentary I made an unspoken commitment to the field of intellectual disability and considered careers in advocacy or clinical service. As I learned more about the field, it became clear to me that one part of the problem that underpinned poor service delivery was a lack of knowledge about how people with the most severe disabilities and difficult behaviour might best be supported and what interventions might decrease disabling behaviours such as self-injury.

Months later I was interviewed for a PhD position at the Institute of Psychiatry by Prof. Glyn Murphy, now at The Tizard Centre. After the interview she showed me around the treatment unit that I would work in for the next 12 years. As she did so, she espoused the same outrage at the documentary that I had felt but also spoke of how scientific method might inform our understanding of the behaviours that the boy at the pillar was showing. The combination of Glyn’s social conscience, scientific rigour and diligence was as inspiring to me now as it was then. Under Glyn’s tutelage, I was encouraged to understand fundamental causes of behaviour from different perspectives and develop new assessment and intervention methods that could be used in clinical practice.

Fast forward thirty five years and my programme of research still focuses on the same behaviours that I began to understand as a raw PhD student. With funding from Cerebra, my research team has been able to describe how genetics, brain development, medical conditions, cognitive profiles, emotion regulation and the environment each contribute and interact to cause difficult behaviours in children and young adults with intellectual disability. We have also tackled new areas such as sleep disorders, overeating, repetitive behaviour, and autism in genetic disorders. We have learned how pain, difficulties with communication, cognitive difference, impulsivity and sensory sensitivity can influence behaviour and we are developing new assessments to ensure these areas are attended to.

The 35 years that have flown by have been characterised by themes that stayed with me from my time as a PhD student. A prominent theme is that I have continued to work with students and postdoctoral research fellows who speak of and are driven by their social conscience, however derived. It is unfashionable in science to mention such a thing but not for us. A second theme has been the licence to study and research fundamental causes of behaviour and generate new information about how behaviours might be treated effectively. This opportunity provided by Cerebra is invaluable and contrasts with the majority of funding opportunities that focus on confirmation rather than innovation and force researchers to pose less ambitious questions rather than break new ground. A third theme has been a commitment to robust evidence and the importance of scientific method or “Data not Dogma” as a friend once printed on a t-shirt for me to celebrate the award of my PhD.

Since we opened the Cerebra Centre in 2008, 40 doctoral students have passed through its doors, each contributing in a unique way to what we know and do. The way we approach self-injury, sleep disorders, repetitive behaviour and a multitude of other problems is very different now to how it was when I watched “Silent Minority”. Further research challenges await us, such as deepening the understanding of the most severe self-injury and intractable sleep disorders, but in the last eight years we have generated a raft of research findings and there are 40 more people with doctoral degrees who can rise to these challenges and that’s got to be a good thing. However, one thing that has not changed is the reluctance of government to convert research findings into mainstream practice. I was reminded of this in 2011, when the BBC screened a Panorama documentary describing abuse and inadequate service provision at Winterbourne View. My mind returned then to the boy I had seen at the pillar, thirty years before.

I have learned two important lessons on my unfinished research journey. The first is that with determination, data and diligence, combined with a team blessed with more than their fair share of smarts, it is possible to change the most difficult behaviour, for most people, for most of the time. The second thing I have learned is that to change the behaviour of government, then in the words of Chief Brody, “You’re gonna need a bigger boat”.”

Prof. Chris Oliver, Professor of Neurodevelopmental Disorders at the University of Birmingham and Director of the Cerebra Centre for Neurodevelopmental Disorders.