Category Archives: Research

Research Advisory Committee – Call for applications

We are recruiting to our Research Advisory Committee. In this article you can find out more about what Cerebra does, the types of research we support, the role and responsibilities of the committee, your eligibility and how to apply.

Cerebra’s role

We believe that every family that includes a child with a brain condition should have the chance to discover a better life together. We listen to families that have children with brain conditions. We use what they tell us to inspire the best research and innovation. Then we help them put the knowledge into practice so they can discover a better life together.

By ‘brain condition’, we mean any neurodevelopmental disorder (NDD) that affects the developing brain, including those caused by illness, genetics or traumatic injury. Brain conditions include (but are not limited to) autism, ADHD, Down’s syndrome, learning disabilities, cerebral palsy, epilepsy and developmental delay.

Our key values are summed up in three key words:

Positive: our optimism helps families see past every barrier.
Inquisitive: a spirit of relentless discovery drives everything we do.
Together: our researchers, practitioners and families go further when they travel together.

Current clinical practice identifies each condition individually with its own set of identifying characteristics, but many neurodevelopmental disorders (NDD’s) occur together and/or share similar risk factors, behaviours and challenges. Thinking is gradually changing and ‘multi-morbidity’ is accepted as the norm. We work across rather than within NDD’s, giving us a unique perspective within the charity research sector.

The types of research we support

At Cerebra, we support two research approaches:

  • Research aimed at reducing the prevalence of preventable disabling conditions and thereby limiting the number of children whose health and wellbeing are likely to be adversely affected.
  •  Research that addresses a range of measures to ensure family needs are recognised and met.

Our current research portfolio reflects both approaches. Our research grants run from 1st January 2013 to 31st December 2019 and over that period, we will invest £4,213,689 in research.

Role and responsibilities

The role of the committee is ultimately to advise Trustees on the relative merits of particular pieces of research. As such, you will be invited to participate in grant application reviews, evaluate the impact of our current research and provide scientific advice which will inform Cerebra’s research strategy.

Grant reviews will involve reading, evaluating, submitting scores and comments on grant applications within an allotted time frame, and attend meetings.

Evaluating the impact of our current research will involve reviewing documentation and potentially site visits.

This is a voluntary role but out of pocket expenses, including travel and subsistence to attend meetings and site visits, will be paid. Commitment is crucial and time constraints will apply to allow us to complete our work and deliver on our commitments in a timely manner.

Are you eligible?

Applications are invited from individuals with a publication record in research (clinical and applied research in the fields that fall under Cerebra’s remit), success in obtaining research grants / awards and a willingness to devote the necessary time.

Posts are formally available from April 2018 and appointments are for a three-year term in the first instance.

Individuals who are interested in applying for one of these posts, or just want more information are encouraged to contact Georgia Mappa at GeorgiaM@cerebra.org.uk with any queries.

The terms of reference and governing documentation for this committee can be downloaded here.

How to apply

Applicants should submit a brief CV giving details of previous key posts, current post, roles in relevant committees and six most relevant publications. This should be accompanied by a written statement (maximum 1,000 words) which covers relevant previous experiences and expertise.

Applications should be submitted by 16th April 2018 and directed to Georgia Mappa at GeorgiaM@cerebra.org.uk

Successful applicants will be invited to join a welcome meeting with Cerebra staff.

Delivering legal rights through practical problem-solving

In this article we take a look at our Legal Entitlements and Problem-Solving (LEaP) Project – why we started it, what we do, what we’ve achieved so far and the longer term impact of our work.

Why we started the Project

Disabled children and their families sometimes need extra support in order to have a normal everyday life – for example, help with bathing or eating, moving around or communicating. Local councils and the NHS have legal duties to meet these needs by providing support, such as someone to help with personal care at home, specialist equipment, adaptations, short breaks or therapy services. However, we know from our work with families that, in practice, parents often struggle to get the right support for their children and a lack of support can harm the health and well-being of the whole family.

The LEaP Project aims to find out why families struggle to get the help that they’re legally entitled to and what can be done to change things. We want to learn more about the problems families face, so that we can work out ways of overcoming them and helping families to get the support they need. The Project is led by Luke Clements, Professor of Law and Social Justice at the University of Leeds.

What we do

We invite families to tell us about the problems they face in getting the support they need. With expert support from the team at the University, we provide legal information and advice to help families overcome those difficulties. We help families to understand what their legal rights are and what they can do if they fail to get the support they need. We also use the information we get from individual cases to write template letters, factsheets and guides, which can help other families in similar situations.

When we see from our casework that several families are having similar problems, we ask our student volunteers at Leeds to study this problem in more detail (often by doing a survey) and then produce a report with ideas about how policy and practice can be changed to avoid these problems in the future.  Past projects have looked at short breaks, school transport and disabled facilities grants.

Then we use the knowledge gained from our advice casework and student-led projects to improve our understanding of why these legal problems occur and to work out practical ways of overcoming them. We want to find out which problem-solving techniques help families to cope better with the challenges they face and how councils and the NHS can change the way they work.

What we’ve achieved so far

(1)  We’ve attracted funding from the Economic and Social Research Council and from Leeds University, which has enabled us to fund a PhD student, develop our Problem-Solving Toolkit (see below) and fund a research assistant post at the University.

(2)  In 2013 and 2014, we published compilations of our advice letters (the ‘Digests of Opinions’) to help other families in similar situations.

(3)  In 2016, we published a report about ‘short breaks statements’ (these statements are published by councils in England and explain how families can get breaks from their caring responsibilities). The report considered how accessible and accurate these statements were.

(4)  We published a guide for families in 2016 called the “Accessing Public Services Toolkit”. The Toolkit describes some of the common problems families face in dealing with councils and the NHS and suggests ways of solving those problems. A second edition was published in 2017, along with a separate version for families in Scotland. We’ve developed an ongoing programme of workshops across the U.K. to share the Toolkit with parent groups.

(5)  In 2017, the student volunteers at Leeds interviewed a small number of families who had applied for a disabled facilities grant to pay for home adaptations. We published a report called “Disabled Children and the Cost Effectiveness of Home Adaptations and Disabled Facilities Grants”, which considered the benefits of investing in these adaptations, including cost savings and improvements in families’ well-being. The report was launched at a conference at the University of Leeds on 12 July 2017 and resulted in meetings with senior members of Leeds City Council, the NHS Leeds Clinical Commissioning Group Partnership and Foundations (the national body for Home Improvement Agencies), along with an article in the Guardian newspaper.

(6)  On 12 July 2017, the Project Team also launched a research report called “Local Authority Home to School Online Transport Policies: Accessibility and Accuracy”. This report explains how difficult it is for families to find accurate information about school transport on council websites and how some transport policies are more restrictive than they should be. As a result of the report, the team met with representatives from the Department of Education and worked with the charity, Contact, on their inquiry into school transport, including giving evidence to a select committee at Parliament. The Department for Education has decided to review its guidance for councils on school transport and it is planning to produce an accessible template for council websites, so that school transport information is more easily available to families. The team has been asked to share its research data with the Department to help with this work.

(7)  As a result of our casework, the Welsh Government has agreed to make its guidance on continence products more clear, so that families are no longer told that they can only have a maximum of 4 products a day.

(8)  We’ve helped families in England and Wales get the services they need – and persuaded councils to change their policies so that other families aren’t disadvantaged. We’ve built on our casework by publishing parent guides, for example on school transport for England and Wales, so that we can share the lessons we’ve learned with many more families. We’ve also published a series of template letters and factsheets for parents to use.

Longer term impact of our research

We know that our work with families helps them to develop the knowledge, confidence and skills they need to get support:

  • “Thank you for all your help and support. I don’t think I would have got anywhere without it.”
  • “We appreciate the continued support to empower us to go through this process.”
  • “I really do appreciate your support. I hadn’t realised there was so much info available to research.”

We will continue to support families and draw on their experiences to help us plan our research and publish resources which help other families in similar situations.

In 2018, our student volunteers will look at three research topics – how difficult it is to apply for a disabled facilities grant, how well the direct payments system works for disabled people and what social care charges disabled people have to pay for their care costs.

We also want to investigate how policies and practices within councils and the NHS can sometimes make it more difficult for families to get the support that they’re entitled to. We’re developing a detailed research plan, which will involve working with councils and the NHS to explore why these barriers exist and what can be done to remove them. We hope to get grant funding in 2018 for this important study, so that we can help to introduce changes within these organisations which will make it easier for more families to get the support they need.

You can find out more about our LEaP project here.

Do you want to see better services for people with neurodevelopmental conditions?

We are working with other charities to understand how we can better support children with brain conditions and their families and we need your help.

We want to understand what life is like for the people we represent. We want to learn about the realities of living with more than one neurodevelopmental condition (diagnosed or not).

Our partners in this project include Autistica, the Neurological Alliance, MQ, Tourettes Action, Afasic, Epilepsy Action and many more. We all want to make sure families are properly supported. Working together we have developed a survey to understand the reality of life with a neurodevelopmental condition. Our goal is to understand what support and services are making a difference and where there are gaps in the help families need.

The more responses we get, the more we will understand about how to improve the support families receive and how we should be targeting our work.

So if you want to see better services for people with neurodevelopmental conditions have your say here.  It would be great if you could also share it with your family, friends and other contacts.

Thank you. Together we can work wonders for children with brain conditions.

#neurosurvey

 

 

Why Our Research is Important – Cerebra Family Research Group

Centre for Educational Development, Appraisal and Research (CEDAR)
University of Warwick
Cerebra Family Research Group
“Strengthening families”

Why our research is important

One of the biggest influences on the development of all children is their family. Children with brain conditions are no different to all other children in this respect – their development is also affected by what happens within their family. The context of the family affects all children’s development in at least three ways:

  1. Parents and carers approach parenting in different ways, and how parents raise their children can affect how children develop both positively and less positively.
  2. The economic context in which families live has a big impact on children’s development. This includes poverty, parents being out of work, and factors such as the quality of the housing in which families live.
  3. Parents and other family members who are under significant stress may affect the well-being of children within the family.

Within this context, the research carried out by the team at Warwick focuses on three big issues for families of children with brain conditions, specifically children with a learning disability and/or autism:

  • Demonstrating that the same family factors that influence the development of all children affect the development of children with learning disability and/or autism. We do this by focusing on analysis of large UK national studies of thousands of children that also include some children with learning disability/autism (e.g., the Millennium Cohort Study). The Cerebra 1,000 Families Study is also designed to contribute to this area of research as we can now start to follow these families over time to generate new research findings that can be used to improve family life.
  • How can parents and other family members can be supported to maximise positive developmental outcomes for their children with learning disability and/or autism? We address this issue by developing and/or testing interventions that can give parents key skills to be more effective in their task of raising children with learning disability/autism. We also develop and/or test interventions designed to directly improve parents’ well-being.
  • Attempting to redress the balance for families of children with learning disability and/or autism. Parents and other family members of children with learning disability/autism are typically portrayed as suffering significant stress when raising their children. This is perhaps true, but misses the fact that raising a child with learning disability/autism is also a positive experience and results in many rewards for families. In our research, we explicitly study family members’ (especially parents’) positive perceptions and experiences when raising children with learning disability/autism. The Cerebra 1,000 Families Study has been designed from the start to capture positive experiences as well as the challenges of raising children with learning disability/autism.

Progress from January 2014 to December 2017

Some key indicators of progress from the Cerebra Family Research group are:

  • Recruitment of 1,013 families of children with learning disability (ages 4-16 years) into the Cerebra 1,000 Families Study.
  • We have grown the research group so that by December 2017 there are 14 team members working actively on family research.
  • From a Cerebra investment of £270,000 over six years we have attracted approximately £2.8 million by December 2017 (four years) to support additional family research.
  • Our funding initially included two full time PhD studentships from 2014-2019, and we have used that funding to part-support and attract a total of 10 PhD students – contributing significantly to the size of the future family research community in the UK.
  • We have published 28 scientific research papers, and at least a further 17 outputs disseminating information about family research to family members.
  • We have given 63 conference and other presentations on family research, at least 19 of which were to audiences of family members.
  • We have developed active partnerships on family research with at least 22 UK and international Universities, and have provided training and internships for seven researchers (in addition to our PhD students).
Longer term impact of the Group’s research for families

Our research team’s work is always designed from the start to achieve longer term impact for families. We work with parents and external partners to use the findings from our research to influence policy and practice, and we use our research findings to develop interventions to directly support family members (especially parents). By December 2017, the following illustrate the impact of our research for families:

  • We have partnered with at least 21 non-government and government organisations in the UK and internationally to carry out and use family research. Notable successes include: the use of our family research findings in two NICE guidelines and influencing a further NICE Quality Standard, several reports and guidelines produced as a part of the Transforming Care Policy Programme, and influencing (with Mencap) the Public Health Agency in Northern Ireland to include children with learning disability and their families in their early intervention policy.
  • Our research group has pioneered the development and testing of mindfulness-based interventions to improve well-being for parents of children and adults with learning disability and/or autism. New research funding (from the Baily Thomas Charitable Fund) will test in a Randomised Controlled Trial design whether online mindfulness intervention can help to improve parents’ well-being.
  • We have also tested an early intervention to increase the skills of parents of children with autism (funded by Autistica), and have a new project to test an early intervention for families of children with learning disability (Early Positive Approaches to Support, developed by a team that included Professor Hastings, and funded by the National Institute for Health Research Public Health Research Programme)
  • Working with Cerebra (and Mencap and the Challenging Behaviour Foundation) and with parents, Dr Totsika from the Warwick team is currently developing a booklet translating our research findings into practical advice for families (funded by the Economic and Social Research Council).

You can find out more information about the team at Warwick and watch a video about their research here.

Direct Payments Survey

In response to enquiries from our members our Legal Entitlements And Problem-solving (LEAP) team are carrying out an electronic survey to find out what families of disabled children think about the direct payment system.

If you’re already using, will be using or used to use direct payments we would be very grateful if you’d consider taking part in the survey.

You can find the survey here together with more information about it. It should take no more than 10-12 minutes to complete and the responses are totally anonymous. Thanks in advance for helping with this important work.

Birmingham Experts Launch Pioneering Autism Research

Leading researchers from Birmingham are today (25th October 2017) launching a major, new UK study into autism and mental health problems – and are calling for autistic people and their families to get involved.

The research is a collaboration between leading investigators at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham, Aston University, and leading UK autism research charity, Autistica.

An estimated 56,000 people in the West Midlands are autistic (1,2*) – and nearly eight in ten (79%) will experience a mental health problem (3).

The research will be the first in the UK to develop an assessment tool to distinguish emotional distress caused by anxiety and depression from distress caused by physical health problems, among minimally verbal autistic people with learning difficulties. Autistic people with learning difficulties are more than 40 times more likely to die from a neurological disorder than the general population – and twice as likely to commit suicide (4).

Commenting on the new research, which will be announced at an autism science talk in central Birmingham later today, Dr Jane Waite, Lecturer in Psychology, School of Life and Health Sciences at Aston University, and one of the study’s lead investigators, said: “People living with autism and their families have highlighted that managing mental health problems is their number one priority.  But, until now, the mental health needs of autistic people, particularly those with learning difficulties, have been seriously neglected due to a lack of research and support.”

Chris Oliver, Professor of Neurodevelopmental Disorders and Director of the Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham, said: “People with learning difficulties may be unable to describe how they are feeling and others may think that changes in behaviour and emotions are caused by things other than anxiety and depression. It is therefore essential that we develop better tools to help us detect when autistic people are experiencing distress and mental health problems and ensure services include everyone and they receive timely and effective help.”

Autistica is urging the local autistic community to get directly involved in this and other planned UK research projects by signing up to its autism research network, Discover. Visit autistica.org.uk/take-part . Discover will link the local autistic community with the Birmingham investigators, as well as other top UK research centres.

Jon Spiers, chief executive of Autistica, said: “We are delighted to be working with the Cerebra Centre on this pioneering new research.  By helping more people sign up to take part in autism research projects, we can make sure research addresses the challenges that families and autistic people face, and provide them with the information, services and care that they need.”

Autistica, together with its research partners, aims to recruit 5,000 autistic people, their families and carers to Discover by the end of 2017.

Notes

About the Cerebra mental health study

A key objective of the study is to improve the identification of mental health problems in autistic people with learning difficulties, who currently represent over a third (38%) of the UK autistic population. This study focuses on designing a practical and effective assessment tool for use in the clinic to identify anxiety and depression in autistic people with learning difficulties. This important research is a collaboration between the University of Birmingham, Aston University, Coventry University, Birmingham Community Healthcare NHS Trust, Coventry and Warwickshire Partnership NHS Trust and the leading UK autism research charity, Autistica.

About the Birmingham Science Talk

The announcement regarding the new Cerebra research will be made at the first of a series of autism events taking place in Birmingham during October and November hosted by Autistica in collaboration with Deutsche Bank. The events are free and anyone can attend. For further details on the talks including location and timings, click here: https://www.autistica.org.uk/get-involved/autism-talks

About autism

• Autism is a spectrum of developmental conditions. The condition changes the way people communicate and experience the world around them. Every autistic person is different. Some are able to learn, live and work independently but many have learning differences or co-occurring health conditions that require specialist support.
• It is estimated that 1 in every 100 people in the UK is autistic.1,2
• Research suggests that the differences seen in autism are largely genetic, but environmental factors may also play a role.
• There’s currently no ‘cure’ for autism, and indeed that is not a priority for the autism community, but there are a range of specialist interventions that aim to improve communication skills and help with educational and social development.

About Autistica

Autistica is the UK’s leading autism research charity. Autistica’s research is guided by families and autistic individuals, with the aim of building longer, happier, healthier lives for all those living with autism. They support research into autism and related conditions to improve autistic people’s lives and develop new therapies and interventions. Since 2004, Autistica has raised over £12 million for autism research, funding over 40 world-class scientists in universities across the UK. For more information visit: https://www.autistica.org.uk/ Twitter @AutisticaUK

About the University of Birmingham

The University of Birmingham is ranked amongst the world’s top 100 institutions. Its work brings people from across the world to Birmingham, including researchers, teachers and more than 5,000 international students from over 150 countries.

About Cerebra

Cerebra is the charity that works with families who include children with brain conditions. They listen to them, they learn from them, they work with them. They carry out research, they design and innovate, they make and share. What they discover together makes everyone’s life better. For more information visit their website: www.cerebra.org.uk.

About Aston University

Founded in 1895 and a University since 1966, Aston University has been always been a force for change. For 50 years the University has been transforming lives through pioneering research, innovative teaching and graduate employability success. Aston is renowned for its opportunity enabler through broad access and inspiring academics, providing education that is applied and has real impact on all areas of society, business and industry.

References

* Figure extrapolated from UK population data for West Midlands
1. Brugha, T. et al., (2011) Epidemiology of Autism Spectrum Disorders in Adults in the Community in England. Archives of General Psychiatry. 68 (5), 459-66.
2. Baird, G., et al., (2006) Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet 2006; 368: 210–15
3. Lever, A. G. & Geurts, H. M. (2016) Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders. 46, 6, 1916–30
4. Personal Tragedies, Public Crisis: The urgent need for a national response to early death in autism. A Report by Autistica, March 2016. Accessed at: http://s3-eu-west-1.amazonaws.com/autistica/downloads/images/article/Personal-tragedies-public-crisis-ONLINE.pdf#

Cerebra Research Support Network – Help us make a difference

We are looking for people with lived family experience of childhood brain conditions to join our Research Support Network. Can you help us to make a difference?

What is the Research Support Network?

Our Research Support Network is made up of people with lived family experience of childhood brain conditions. That could be as a parent, carer, or sibling or as a young person directly affected. As well as funding research, we work directly with families. By listening to families, we fund research that uncovers knowledge they want. Drawing on research, we help families develop the knowledge, skills and confidence they need to overcome challenges. Our Research Support Network will help us to listen to families and to translate research into resources that help families.

We’re looking for people who:
• are passionate about research and would like to learn more;
• can listen and learn from others;
• are committed to considering and representing the needs of families that have children with brain conditions.

What does it involve?

We need enthusiastic, thoughtful people who want to make a difference. Your role in the Research Support Network will involve reviewing and providing feedback on:
• materials developed by us for parents;
• the impact of our current research projects; and
• grant applications invited by us for funding by Cerebra.

What will you actually do?

As a Research Support Network member you will be invited to review our draft publications, participate in grant application reviews and evaluate the impact of our current research.

Reviewing draft publications will involve reading and commenting on draft publications, within an allotted time frame, before they are finalised. Your views on readability, relevance and presentation will be invited and fed into the final design of the information we provide for families.

Grant reviews will involve reading, evaluating and submitting scores and comments on grant applications within an allotted time frame. Your views will feed into final grant awarding decisions. The applications will contain a detailed summary of the proposed research in plain English and you will be asked to comment on whether the research is relevant and important to children and young people affected by brain conditions.

Evaluating the impact of our current research will involve reviewing documentation and, potentially, site visits.

Most Research Support Network activities can be done from home, but may occasionally involve meetings and site visits. You can volunteer for just one or two of the three activities or all three. This is a voluntary role but out-of-pocket expenses, including travel, subsistence and childcare to attend meetings and site visits, will be paid. You can manage your commitment by limiting how much you want to be involved in. Time constraints will apply to allow us to complete our work and deliver on our commitments in a timely manner.

Are you eligible?

We are looking for people with lived family experience of childhood brain conditions. That could be as a parent, carer, or sibling or as a young person directly affected. You do not need to have a scientific or medical background as all documentation will be written in a ‘plain English’ format.

If you are interested in becoming a member, or just want more information, please contact Georgia Mappa at GeorgiaM@cerebra.org.uk

 

Cerebra’s Mission

We believe that every family that includes a child with a brain condition will have the chance to discover a better life together.
We listen to families that have children with brain conditions. We use what they tell us to inspire the best research and innovation. Then we help them put the knowledge into practice so they can discover a better life together.
By ‘brain condition’, we mean any neurodevelopmental disorder (NDD) that affects the developing brain, including those caused by illness, genetics or traumatic injury. Brain conditions include (but are not limited to) autism, ADHD, Down’s syndrome, learning disabilities, cerebral palsy, epilepsy and developmental delay.

Our key values are summed up by three key words:
Positive: our optimism helps families see past every barrier.
Inquisitive: a spirit of relentless discovery drives everything we do.
Together: our researchers, practitioners and families go further when they travel together.

Current clinical practice identifies each condition individually with its own set of identifying characteristics, but many neurodevelopmental disorders (NDD’s) occur together and/or share similar risk factors, behaviours and challenges. Clinical thinking is changing and ‘multi-morbidity’ is accepted as the norm. We work across rather than within NDD’s, giving us a unique perspective within the charity research sector.

My Experience of Applied Behavioural Analysis

Razwana Mushtaq, whose 5 year old daughter has autism, discusses her experience of getting a diagnosis for her daughter, recent research on early intervention and what it is like running an Applied Behavioural Analysis (ABA) programme, with the support of UK Young Autism Project (UKYAP)

 

Background

As parents we want our kids to be happy and independent. We need to support them in order to reach their full potential. As a parent myself, I would do whatever it takes to give my children the best possible. I have four children and do not treat my youngest child, who is five years old now, any different to my other children just because she has autism. I have the same dreams and hopes for her future.

She was delayed in all areas of her development from a very young age and was a very quiet baby. On her first birthday I saw my little girl was enjoying her day, however, over the next twelve months everything changed; her behaviour became different, she started to chew and eat everything in her reach, which could be paper bags, beads, etc. She did not like to be with others as she just would run around and flap her hands, she didn’t make eye contact or respond to her name, she had no language and I didn’t know what to do to get her to sit or play.

She finally got a hearing test at the age of two, which she passed, but the consultant told me to get a referral to a specialist as she was delayed in all areas of her development. I visited my GP to make a referral for further assessments, then things started to move forward at the slowest pace possible and her behaviour was not improving. In the mean time I had a child with difficult behaviours and sleep issues which I didn’t know how to manage. To feel such helplessness without any support, life was as difficult as could be.

We waited for over 9 months for a professional assessment, and in January 2015, a day before her 3rd birthday we finally got a 3 day assessment. It was such a long process, mostly of waiting for appointments with nothing to offer in-between. I felt it was a waste of time that could have been spent on supporting us both in some way. To have the diagnosis of autism confirmed was upsetting indeed, even though I was very much expecting it. But to know your child has disability for life was painful and I felt helpless. I was left not just to deal with her difficulties and behaviours but also without a clue on how to manage all of this. Not one professional mentioned early intervention or anything else to support us. At this point I was losing all hope; I was mentally and physically tired from running after her all day, trying to stop her from eating inedible items and hardly sleeping at night. My other children were all affected and us as a family.

Discovering Applied Behavioural Analysis (ABA)

Following the lack of professional support we received, I knew I had to take control of the matter and do something myself. I began to do my own research into autism and how it could be treated. After spending few hours I came across early intensive behavioural intervention (EIBI) and Applied Behavioural Analysis (ABA). ABA comprises specific teaching methods developed through extensive research and involves teaching in a systematic manner by breaking down tasks. Intervention is structured so that appropriate behaviours such as play, language and socialisation are maximised through prompting and positive reinforcement.

In a blog by Professor Richard Hastings, ABA for children with autism is described as ‘a values-driven, child-centred, developmentally-informed, evidence-based, effective use of principles of learning to help children with autism achieve their full potential.’ (1)

I decided to start an early intervention programme as soon as possible with my daughter, as she had lost so much time already. Recent research has shown significant gains from early behavioural intervention on children’s early skills (cognitive skills, joint attention, play and stereotypic behaviour), with the greatest gains seen in the children who entered treatment prior to their second birthday. (2)

When my daughter was three, we started the UCLA Young Autism Project model of ABA founded by Dr Lovass (3) as it was a dynamic model and tailored to the needs of the child, while relying on behavioural principles and supported by extensive research (4 ). The programme is specifically focussed on my daughter’s speech and language, communication, play, social and self-help skills.

The only providers in the UK I could find were UK Young Autism Project (UKYAP), who offer ABA trained consultants to design a personalised ABA intervention for the child and give face-to-face supervision and support to help parents and/or tutors implement the programme. The UKYAP consultant made visits every 2 weeks, as my daughter’s needs and the teaching methods used needed to be reviewed often as well as regular evaluation of progress. The programme required at least 35 hours of teaching per week and is best to be done in a homebased setting to begin with. Through this type of early intervention, UK Young Autism Project report that ‘a sizable minority of children have been able to achieve normal educational and intellectual functioning by seven years of age. For those that do not achieve typical levels of functioning, significant improvements in language and other important skills have been achieved, while inappropriate behaviours decreased’ (5 ).

I thought this was totally amazing as some of these children wouldn’t otherwise be able to reach such goals.
I soon found out that this intervention was not cheap. I couldn’t afford to hire tutors so I decided that I would do some of the hours myself and try to get volunteers from the Psychology Department at the local University, which I manged to do. Parental commitment is needed as consistent teaching is important and to follow through and generalise the skills into daily life. My daughter’s programme is now funded by The Giving Tree Foundation for a year and we have weekly visits from the UKYAP consultant and the tutors are provided by UKYAP. This has taken her ABA programme to the next level, with consistent teaching that is much more effective for her learning and huge support for myself.

The progress we saw following ABA

My life changed as I managed my daughter’s ABA programme, liaising with tutors and working towards her targets, but within a week of starting the programme she was sleeping better and she was matching items within a few days. Imitation was the biggest gain I feel she made in the early days of the programme. This was a little girl who couldn’t copy others but now she looks and tries to copy those around her. Each task had to be repeated several times a day and tasks were broken down to help her understand them. The reinforcement used motivated her and any prompts given were faded out. Each day she spent learning at a pace suited to her and we felt the methods were very effective.

She is now catching up on some of her delayed skills including gross motor, fine motor, imitation, some play skills, matching colours, shapes and so much more. She is learning to read and write. She can dress and undress herself. Her eating issues have been resolved and she is now toilet trained. She can sit nicely and do a 20 piece puzzle independently with an adult giving her praise to continue. She has made amazing progress in 2 years. She is beginning to say words and is able to express her needs through PECS and now tries to interact with others, she smiles back and responds to every call of name. We get to see those beautiful eyes staring right at us. All of these are priceless to us, I never thought this would be possible in such short time.
What I learned from my journey is that if you want your child do well in life, you have to take control of the matter yourself. The system does not seem to be offering early intensive behavioural intervention (EIBI) for every child that might benefit from it, when there is clear evidence that it is key from a young age. I strongly believe we need invest into their future now and not in 20 years when billions will need to be spent on the many young adults with autism that will need significant support.

I have struggled in running my daughter’s ABA programme, it has been the biggest challenge of my life but I was not going to let her down and prevent her from having the best education possible. If you find yourself in the same position as me and feel unsupported, I recommend doing some research yourself to find out about evidence based interventions like EIBI.

©Razwana Mushtaq 2017, writing as a parent contributor for the Family Research Ambassadors Project run by the Centre for Education, Development and Research (CEDAR), at the University of Warwick and Cerebra.

References

1 Hastings, R.P. (2012) What is ABA for children with autism? Prof Hastings’ blog. Available online http://profhastings.blogspot.co.uk/2012/12/autism-evidence-3-what-is-aba-for.html [Accessed 01 August 2017]
2 MacDonald, R., Parry-Cruwys, D., Dupere, S., Ahearn, W. (2014) Assessing progress and outcome of early behavioural intervention for toddlers with autism. Research in Developmental Disabilities 35, 3632–3644
3 Lovaas, O. I. (1987) Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.
4 Eldevik, S., Hastings, R.P., Hughes, J.C., Jahr, E., Eikeseth, S., & Cross, S. (2009) Meta-analysis of Early Intensive Behavioral Intervention for children with autism. Journal of Clinical Child & Adolescent Psychology, 38, 439-450.
5 UK Young Autism Project (2009) Our commitment to providing the most effective treatment for autism [Accessed 01 August 2017]

School Transport Report

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Our student researchers at the School of Law, University of Leeds have published a report about the accuracy and accessibility of school transport information on local authority websites in England.

The students looked at 71 websites and identified serious failings in the information provided to families.  Almost 40% of the websites failed to clearly explain the legal rights of children with special educational needs or disabilities to school transport. The report also highlights how some school transport policies are more restrictive than they should be (see the examples on page 12/13).

You can read the full report here.

If you have a school transport problem, our Parent Guide explains what you can do to solve it.

Disabled Facilities Grants

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Our student researchers at the School of Law, University of Leeds, have published a report on Disabled Facilities Grants and home adaptations.

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 our DFG Project is to assess the cost effectiveness of DFGs and the wider impact adaptations have on the disabled child and their families.

The latest report from the team considers the benefits of investing in home adaptations for disabled children, including cost savings and improvements in well-being.

You can read the full report here.