Category Archives: Research

Improving early intervention for children with autism

Zarbanoo Rajput

Zarbanoo Rajput BA (Hons), mum to a 15 year old with autism and an active member of ABAAccess4all parental campaign discusses recent research on the use of early behavioural intervention for children with autism across Europe, and reflects on her own experience in the UK.

“Autism Spectrum Disorder is a developmental condition affecting language, communication, behaviour, and socialization. At one end of the spectrum, there are individuals who can live an independent life, at the other end, there are children who start their school life with little or no language, display challenging behaviours, cannot use the toilet and have severe learning disabilities. Inclusion in mainstream education is uncommon for children at the more severe end of the spectrum, they are likely to be educated in a special school or unit.

Our beginning

I am a mum of 15-year-old teenager with autism who received an official diagnosis when he was aged four and half. Whilst it was difficult to come to terms with this diagnosis, we quickly pulled ourselves together and asked ‘what can we do to help our son?’, ‘What is the best thing to do?’ This is where the madness began. Every professional we spoke to had a different opinion. We had no idea who was speaking the truth. It was extremely difficult to access accurate information from a reliable source, let alone be supported with the intervention approach, Applied Behaviour Analysis (ABA), we ended up choosing.

For more information about Autism and Applied Behvaioural Analysis (ABA) please see Professor Richard Hastings blog ‘What is ABA for children with autism for?’

Early intervention across Europe

I was thinking back to our family’s experience when reading a recent research study: Use of early intervention for young children with autism spectrum disorder across Europe.(1 ). The study was written by a total of 40 researchers from 32 Universities across Europe. The purpose of this research study was to get a picture of the use and the weekly number of hours of early intervention/therapy provided for young children with autism spectrum disorder (ASD) in a number of European countries.

Parents from 18 European countries took part and completed an online survey, which asked about current use of intervention (type and number or hours per week) received at home, school and in a clinic setting such as a child disability clinic. In total, 1680 parents who had seven-year-old children or younger with autism spectrum disorder took part. Only parents of children up to the age of seven were in the study as by this age the majority of European children have started school.

The type of interventions the study was interested in included: behavioural intervention, developmental and/or relationship based intervention, speech and language therapy, occupational therapy, other educational and psychological interventions, and parent training. When parents were asked about their use of a specific intervention type, it was noted that similar/identical therapy programmes were available with different names. Therefore, intervention examples were given specific to each country, such as Applied Behaviour Analysis (ABA) and Pivotal Response Training (PRT), when asked within a broader category question such as ‘is your child receiving behavioural intervention?’

The study found that there is variability in the use and intensity of early intervention between European countries. Seventy four percent of parents from the UK reported that their child received an intervention. Indicating that 25% of children in the UK were having no early intervention at all. The average intensity of early intervention in the UK per week was 6.97 hours. Poland was found to have the best early intervention rates in this study, with 98.7% of children having some form of intervention before they are 7 years old.

Eighteen percent of parents of children with autism from the UK were reported to be receiving a behavioural intervention (7.54 hours on average per week), 8.1% a developmental or relationship based intervention (4.57 hours), 62.2% speech and language therapy (1.11 hours), 26.1% occupational therapy (1.24 hours), 23.4% other educational and psychological intervention (7.93 hours) and 23.4% were receiving parent training (1.61 hours).

The study concluded that while there is evidence that each and every child with autism needs to access individualised, multidimensional and multi-disciplinary intervention, almost 10% of parents who took part in this study throughout Europe, reported no early intervention at all for their child. The UK was one of the worst performing countries, with 25% of children studied receiving no early intervention. The authors reiterate the importance of training professionals in identifying and treating ASD as early as possible so families are not left unsupported in day-to-day life.

Our experience of early intervention

The study outlined above suggests that children receiving behavioural intervention in the UK are receiving an average of 7.5 hours of therapy per week. While this is a good start only 18% of UK parents access this level of behavioural intervention. This number is low and reflects our own experience as well. Currently, post diagnosis, parents are referred to Early Bird and Early Bird Plus programmes, which are run by the leading autism charity, the National Autistic Society (NAS). Referrals are also made to other services such as Speech and Language Therapy, Occupational Therapy, Educational Psychology, and specialist Communication/Autism Teams. We received a diagnosis back in 2005-2006. Note, no referral was made to a behavioural specialist. It seems ABA or other evidence based behavioural interventions are not routinely offered by the NHS for young children in the UK. Reading this, one might think how lucky we are to have so many services available to our families. Unfortunately once you go through them all, you discover that, it is all flash and no substance.

Once we managed to take the diagnosis in, we started reviewing literature about autism interventions. The child psychiatrist we saw at diagnosis said that the more the child’s language develops, the better the prognosis. We were very concerned about Elias’ future. Aged four and half at diagnosis, Elias though had some language, was very far behind his peers. He couldn’t label colours, numbers, he had no understanding of phonics, and had major problems with haircutting and bath time, to name a few. Our family needed help, Elias needed help, help I was hoping to find going through the Early Bird Plus programme. Unfortunately we didn’t see the progress we were hoping for, so we began looking elsewhere.

We were fortunate to have heard about someone who had a special educational needs tribunal bundle to share with parents. The wealth of information available in this bundle opened up our eyes. There were studies showing positive results for children with autism receiving an ABA programme, including one, which was focused on the four to seven age range, which applied to us. Other studies were for younger children. Overnight, we became familiar with names of researchers and research studies we would never have known were out there. However, the minute we started mentioning to professionals the term “ABA” and our interest in using this approach with our son, all doors started to close in our face. We were steered towards a programme called Treatment and Education of Autistic and related Communication handicapped Children, also known as project TEACCH. ‘What did we do wrong?’ From our perspective, we made an educated decision about the best intervention option for our child, for which we were punished. We strongly feel more evidence based early intervention in general is needed in the UK, with currently too many children and families missing out.

Parents working together using research evidence

In the UK, many parents of children with autism I have met are very unhappy about the situation with autism diagnosis and early intervention, hence the need for ABAAccess4ALL campaign. ABA Access4All aims to improve UK understanding of and access to professionally managed ABA therapies for children with autism and other disabilities.

Many parents I have spoken to feel they have been misled about ABA and are angry about their child/children’s precious time being lost. Professional recommendations about early intervention for children with autism in general suggests that maximum gain can be made between the ages of two to four. However, diagnoses are often provided late or when early diagnosis is made, accurate information about effective interventions is not given to parents.

I believe that parent-led campaigns for UK services to make available evidence-based approaches for children with autism are an excellent way to use research evidence to give children the best start in life. ABAAcess4all is an example of one such campaign with an evidence-based focus. We will continue to strive for better services in the hope that all children and families receive what they need without parents being driven to bankruptcy, physical and mental exhaustion, and experiencing significant strain on their family relationships”.
©Zarbanoo Rajput 2016, 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. Salomone, E., Beranová, Š., Bonnet-Brilhault, F., Lauritsen, M. B., Budisteanu, M., Buitelaar, J., … & Fuentes, J. (2015). Use of early intervention for young children with autism spectrum disorder across Europe. Autism, Vol 20 (2) 233-249

1000 Families Study – Age Range Extended

Are you the mother, father, or caregiver of a child aged between 4 and 15 years, 11 months who has a learning disability?

Our 1000 families study, carried out at the University of Warwick, is exploring the experiences of family members who live with a child with a learning disability.

The study has recently received permission from the NHS Research Ethics Committee to extend the age range. We can now include children in the study if they are between the age of 4 and 15 years and 11 months (previously 4 and 11 years and 11 months). We heard from a number of families who would have liked to take part, but were unable to because their child was between the ages of 12 and 16 years. If this is you, we’d  love to invite you to get involved.

We are really keen to survey at least one person in the family (especially, a mother and a father) to explore whether family members have similar or different experiences and capture the experience of the whole family. We want to make this the largest study ever of families of children with learning disability in the UK and help shape future information and support.

University of Warwick logoIf you are the parent/caregiver of a child with a learning disability between the age of 4 years and 15 years and 11 months and would like to take part in a large scale family research project, please follow this link to find out more and complete the online survey.

If you have any questions please don’t hesitate to contact the research team on familyresearch@warwick.ac.uk or call 02476 524139.

 

Our Research Strategy

Our Research Strategy

Membership of the Association of Medical Research Charities (AMRC)

Cerebra are actively pursuing membership of The Association of Medical Research Charities (AMRC).

Cerebra Research Strategy

We are currently up-dating our Research Strategy which will be published here shortly.

Research Advisory Committee

We will be recruiting to our Research Advisory Committee soon and a list of members will be published here.

Use of animals in research – Cerebra statement

Cerebra Trustees consider it important to emphasise the charity’s pride in never having been involved with any form of animal research and to emphasise that it has a keen and public desire not to be so involved. However, Trustees also believe that the charity should consider all research funding applications on their own merits and that, within these broad parameters, they should be free to approve applications that might involve such research where, in the opinion of the Trustees, it would be in the best interests of children with a brain condition to do so.

To date we have not been involved in such research – nor do we have any plans or desires to be so. Nevertheless, it would not be an honest statement to make that we would never be so involved, as our prime interest is in the lives of people, especially babies, children and young people. We hope we may continue to serve that interest without the need for animal research – but we do not operate within a policy framework that prevents such research ever occurring at any time in the future.

Cerebra endorse the AMRC policy on the use of on the use of animals in research. This policy can be viewed here:
http://www.amrc.org.uk/publications/statement-on-the-use-of-animals-in-research

Supporting research in universities – Cerebra statement

Cerebra supports research at universities in line with our charitable research priorities. We fund research for the public benefit that will improve human health and wellbeing and we do not seek to own the intellectual property arising from the research. We do not fund major items of capital expenditure such as buildings and equipment. Cerebra cover the direct costs of the research only; we will not meet the full economic costs of the research nor pay towards overheads that support general university infrastructure. All future research funding opportunities will be advertised through an open tender and peer review process in line with our research strategy.

Cerebra adopt the policy of the Association of Medical Research Charities (AMRC) on Supporting Research in Universities. This policy can be viewed here:
http://www.amrc.org.uk/publications/statement-supporting-research-universities

Why should I take part in research about families of children with learning disabilities?

University of Warwick logoThe CEDAR research centre at Warwick University needs 1000 children with learning disabilities and their families to help with a research project.

Jane Raca, whose son James has learning disabilities, autism and challenging behaviour, considers how research can help families like hers:

If someone had asked me to help with a research project when my son James was little, I would probably have asked them to go away. I was usually very tired and grumpy, because James didn’t sleep through the night. He is autistic and has learning disabilities. He often woke in the early hours and because he needs one-to-one supervision, I had to be awake too. My joints ached from moving and handling him, as he is a wheelchair user and doubly incontinent. All of his care needs were carried out by me or his Dad and despite the hoists in our house, this physical care was time consuming and heavy work.

James is now 17 and goes to a specialist boarding school, so I get a reasonable night’s sleep. If someone asked me to help with a research project today, I would be much more co-operative. But rest is not the only thing which has changed my approach. I have come to appreciate just how powerful evidence can be in influencing government policy and how it can result in more investment for disabled children.

When James was 5, family life was very difficult. He was frightened of leaving the security of the house and had a phobia about getting in the car. As a result, his brother and sister ended up trapped at home a lot of the time. I was deeply worried about them. What we really needed was someone to look after James to give us a break, so we could go out to the cinema, or for a pizza. Eventually we were referred to the social care department of our local authority, as a priority for support. Despite this, the council refused to fund any respite care and so began a long battle.

Six years later, for the first time local authorities were placed under a specific legal duty to provide short breaks for carers of disabled children. I didn’t know then that the law had changed. But looking back, I realise that we had stopped hitting a brick wall in our efforts to get respite and had started pushing at an open door.

The origins of the new law lay in campaigning by disability charities such as Mencap which led to parliamentary hearings, where parents, government ministers and other officials gave evidence. This was later followed by research commissioned by the Every Disabled Child Matters Campaign (EDCM) and the Department for Education (DfE). The research project “Aiming High” took place in two stages, starting in 2009 and ending in 2011. In this way, the families which were involved could be followed over time. The results showed that it was cheaper to provide short breaks to families who needed it, before they became so exhausted that they were incapable of looking after their children at all.

Now, headed by Professor Richard Hastings, The Cerebra Family Research Group based at CEDAR, a research centre at The University of Warwick and the research charity Cerebra, needs 1000 families of children with a learning disability to volunteer for another study over time. They want to look at the wellbeing of families who have children with a learning disability; not just mothers, but fathers and siblings as well. The study will further the understanding of what it is like to raise a child with a learning disability in the UK and will help to shape future support for families and children.

If your child is between 4 and 15 years, 11 months old and has learning disabilities (including children with autism or any one of a number of genetic syndromes as well) please consider taking part. It could make a real difference.

To find out more about the study and to complete the online survey please visit the website. If you have any questions please contact the research team by email: familyresearch@warwick.ac.uk or call 02476 524 139.

©Jane Raca 2016, 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.

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

BMA AwardsTwo 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.

Poppy's pictures 1I 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.

Poppy's pictures 2The 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.

poppy-gameI 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

Rob and Poppy 2Mikeda 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