Autism at school: seven questions for parents

autismatschools2We are pleased to share a short article written for parents by Prof Richard Hastings (Cerebra Chair of Family Research at Warwick University) about autism and school.

The article is an attempt by Richard to make more accessible the sorts of questions that are important when considering whether school based interventions/supports are suitable for children and young people with SEN, autism and intellectual disability.

Richard suggests that the questions parents should ask are:

  • What are the needs of my child and my family at this time?
  • How will the intervention suggested address these needs?
  • How is the intervention meant to work?
  • Has the intervention been fully described and written down?
  • Is there evidence the intervention is effective?
  • Is there any evidence the intervention is effective in the real world?
  • Will the school be able to show you whether the intervention is working for your child?

To read the article please click here.

We would add one further question to the seven suggested by Richard and that concerns information sharing and communication between the school and other agencies (health, social care) that may be involved in the child/young person’s overall support.  Its important that the overall package of support ‘fits’ together.  So parents need to question this and how communication between the school and these other agencies is going to be managed.

Additionally you might like to look at the ‘What’s the Evidence’ summaries written by another Cerebra centre, PenCRU, and also Cerebra’s Guide on Decision making, Confidentiality and Sharing Information. 

Cerebra’s Legal Entitlements Research Project – a potted history

I joined Cerebra in June 2010 as Head of Research and Education; prior to that I worked for Home-Start UK, supporting vulnerable families.  I knew there was a need for parents of disabled children to be informed about their legal rights.  With that in mind I searched for a speaker who could deliver Legal Rights seminars on Cerebra’s behalf to parents of disabled children. I found Prof Luke Clements.

The seminars were so popular we had to move to bigger venues and put on more dates.  From those seminars we collated several ‘frequently asked questions’ which led to the development of our Parents’ Guides and ‘frequently occurring problems’, which led to the development of several model letters (Precedent letters) that parents can use to tackle problems they are encountering.

Now, both the Parents’ Guides and the model letters are continuously updated and added to.  While the guides and model letters worked well for many parents, it became apparent that some parents/carers needed a little more input to enable them to access their legal rights. So we established the Cerebra Legal Entitlements Research Project at Cardiff Law School.

The aims of the programme are:-

  1. To provide support for disabled children, their families and advisers, who are encountering difficulties with the statutory agencies in relation to the provision of health and social care;
  2. To identify why problems occur concerning the discharge by public bodies of their statutory functions;
  3. To identify accessible and effective procedures that enable disabled children and their families to maximise the benefits of their legal entitlements; and
  4. To identify effective ways by which legal entitlements can be delivered to disabled children and their families.

The programme, under the direction of Hannah Walsh from Cardiff Law School, became operational in October 2013. Cardiff University law students are the programme’s advisers. Their role is to personalise the model letters in such a way as to address the problems encountered by the parents, with the aim of leading to its speedy resolution. This work is supervised by qualified staff as well as by firms of solicitors providing pro bono support for the scheme.  The programme is already enjoying successes, two of which; Oliver’s story and Jinny’s story; have been reported on.

From 1st January 2014 Cerebra expanded on this work by supporting a six year research project at Cardiff University with Prof Luke Clements as our Academic Chair. We are now looking for someone to take up a funded PhD studentship in Social Care Law at Cardiff Law School. The studentship will commence in September 2014 and this link – – gives more details on the research opportunity and the application process. Please share this with anyone you know who may be interested; we want to encourage as wide as possible dissemination of this opportunity.

Future Plans:

On 7th April Carys Hughes joined our Cerebra team and will be leading on Cerebra’s Legal Entitlements Research Project.  A qualified solicitor, Carys has a wealth of experience that will be very beneficial to this project. I’m sure she’ll introduce herself in the future.

In October the Cerebra annual conference theme is Problem solving’: accessing decent services and support for children with complex needs and their families. We have 50 places available at a much reduced rate of £15 for parents of children with a neurological condition, or young people themselves with a neurological condition.

Looking forward, we are hoping to expand the Legal Entitlements Project to other University law schools thereby growing the legal support that is available to disabled children and their families.

Tracy Elliott

Head of Research

Assistive Technology

Fassistive-techrom shoelaces to cybernetics: the world of assistive and alternative technology for children.

Assistive technology (AT) is a term that can be applied to anything, whether it is a high-tech device or an everyday item used in a particular way, that enables someone with a disability to access and participate more fully, help them to do more, in aspects of life (as in home, school, community).

A search for something to assist a child will probably turn up some closely related fields as well:

  • Augmentative and Alternative Communication (AAC), which includes not only devices such as picture and symbol cards and boards but also, in its widest definition, sign languages that assist or replace expression and speech; Telecare, Telemedicine or Telehealth, involving technology to provide assistance and services remotely (e.g.;
  • Wearable Technology, which monitors (probably best known for its use in sports training) and/or regulates or treats, often based on electronic sensors;
  • and an up-and-coming concept of “Welfare Technology”, which aims to improve quality of life and/or treatment procedures using techniques such as robotics or software. (Two projects that illustrate what Welfare Technology is are at the University of Southern Denmark and at Heriot-Watt University, Edinburgh)

So how to decide whether to search out or invent an item of AT and alight on what is needed for a child? Communication is one of the first and most important skills an infant needs to start practising, so those needing extra help to communicate may well be introduced to sign languages and other AAC mechanisms by parents and speech therapists, before they reach school age, alongside therapeutic and educational communication techniques.

Many ideas that come naturally in caring for a child and teaching them skills, at home and elsewhere, could come under the heading of “AT” without having the label on them. An occupational therapist might also be involved in making recommendations for an assistive device.

Once at school, anything that is used especially to minimise extra challenges so that a child is able to do what others are doing in the classroom (e.g. an AAC device, a computer / software / special keyboard, or even a special pen or a chart serving as a memory aid) could be categorised as AT.

Potentially it goes beyond the obvious areas of mobility, self-care, communication, vision and hearing, reading, writing and arithmetic to things like aids to completing tasks, thinking / cognitive processing, organising, interacting or concentrating. The teachers, school SENCO, therapists, local authority schools advisors, and the local Communication Aids Service could potentially lend their expertise to it. Other approaches may have been tried, before exploring more formal ways of introducing extra help. The child may have a plan set up that includes educational goals, like an IEP (Individual Education Plan), Statement of SEN, Education Health and Care Plan or Record of Needs, which would bring in some necessary liaison with parents about what the child needs to be able to do at home and at school, and what approaches are taken to that.

A plan also provides a mechanism for regularly reviewing how the AT is functioning as a help to the child and whether something else needs to be considered as time goes on. Specifics within the plan and the reviewing mechanism could include the solutions to questions like; what do they need to be able to do (or do more easily)? What are the criteria for deciding whether the identified need is being met? How is the device being tried, where (e.g. at home as well) and how long for? What follow-up is there, e.g. how is it determined whether the technology is / is not contributing to meeting the need? (e.g. samples of school work, observations, progress reports). If it doesn’t appear to be effective, why might this be? What would the next step be? (e.g. further advice).

Depending on the circumstances, local authority or health services may fund assessment and equipment. If a family is thinking of buying an item privately or is otherwise able to source it, for example from a grant-making trust, one of the factors to think about is, would this be used in the classroom as well as at home? Sometimes there are reasons why a school might not want to use an item, but it could be expected that a child could make best use of AAC and AT if it is fully integrated into life.

In terms of children’s rights, a local authority assessment should take into account a need for assistive technology (cfCerebra’s Disabled Children Parents’ Guide: Social Care, Housing and Health). Arguably, it would be desirable for AT to be considered in a knowledgeable and creative way for any child with additional needs.

Devices designed for school tend to have a different emphasis and to be supplied by different companies from home devices, but the technology spans both environments. In turn, suppliers of home technology also tend to be concerned with supplying for home adaptations, e.g. under Disabled Facilities Grants or to social services / community equipment departments.

One way of seeing what is available and trying things out is to go to exhibitions. Suppliers in the UK market attend the big exhibitions such as Naidex, (this year at NEC Birmingham, 29 April – 1 May), and Kidz, (Disabled Living, next event coming up in June). Assistive technology also features in more general education exhibitions geared to teachers, but open to all, such as NASEN Live, (next event at the Reebok Stadium, Bolton, 21-22 May), and the TES special educational needs show held annually at the Business Design Centre in London.

At many of these, children (and, I suspect, parents) can have a good day trying everything out. If it is not practicable to visit, the exhibitions’ websites can still serve as starting points to look at the websites of the exhibiting suppliers that they list, where there is sometimes a treasure trove of information.


Companies like Inclusive Technology, supply schools with accessories and software to help children with additional needs to access learning.

A communication aid service is available in each area of the UK, listed by Communication Matters. They also have lists ofother AAC resources.

The Family Center on Technology and Disability provides a substantial amount of information on AT (please note, not from the UK so statements on aspects of law and procedure will be different).

Tips for using assistive technology with young children, and (Tots n Tech newsletter, Thomas Jefferson and Arizona State Universities). There is also a “webliography” of downloadable pictures that families and schools can use with children.

Techmatrix and Abledata are US databases of assistive technology products and what they can be used for,  and

Examples of technology / software designed to make learning more accessible,  (U.S. National Center on Accessible Instructional Materials)

Video-based training on the use of assistive technology from Vanderbilt University  and the Universities of North Carolina and Kentucky.

Assistive Technology: Strategies, Tools, Accommodations and Resources (ATSTAR), course designed for teachers (cost), (Knowbility)

A method for teaching a child to use a switch, (Linda Burkhart)

Assist UK (Disabled Living Centres) – a place to look for mobility / daily living aids.

Books on Asperger syndrome

Library booksWe have a wealth of books and resources available in our free lending library on Asperger syndrome.

Books for parents

L6311 – The Complete Guide to Asperger Syndrome by Tony Attwood
L1350 and L6524 – Asperger Syndrome: a guide for parents and professionals by Tony Attwood
L6279 – Parenting a Child with Asperger Syndrome: 200 tips and strategies by Brenda Boyd
L6309 – Eating an Artichoke: a mother’s perspective on Asperger Syndrome by Echo Fling
L6426 – Asperkids: an insider’s guide to loving understanding and teaching children with Asperger Syndrome by Jennifer Cook O’Toole
L6511 and L6525 – Raising Martians From Crash Landing to Leaving Home: how to help a child with Asperger Syndrome or high-functioning autism by Joshua Muggleton
L6512 and L6528 – 1001 Great Ideas for Teaching and Raising Children with autism or Aspergers by Ellen Notbohm
L6224 – Create a Reward Plan for Your Child with Asperger Syndrome by John Smith
L6403 – The Asperger Children’s Toolkit by Francis Musgrave


AV6310 – Asperger Syndrome: a different mind by Simon Baron-Cohen
AV6398 – An Animated Introduction to Asperger Syndrome by Biomation

Picture books:

C0147  All Cats Have Aspergers by Kathy Hoopman
C0178  Inside Aspergers Looking Out by Kathy Hoopman

Books for schooling

L1677 – Home Schooling the Child With Asperger Syndrome: real help for parents anywhere on any budget by Lise Pyles
L6144 – Asperger Syndrome: what teachers need to know by Matt Winter
L6480 – Spark: a mother’s story of nurturing genius by Kristine Barnett
L6462 – Asperger Syndrome in the Inclusive Classroom: advice and strategies for teachers by Stacey Betts
L6513 – How to Make School Make Sense: a parents’ guide to helping the child with Asperger Syndrome by Clare Lawrence

Books for kids:

C0168 – Kevin Thinks About Outer Space Confusing Expressions and the Perfectly Logical World of Asperger Syndrome by Gail Watts
C0176 – The Red Beast: controlling anger in children with Asperger Syndrome by K I Al-Ghani
C0181 – What Is It Like to be Me? A book about a boy with Asperger Syndrome by Alenka Klemenc
C0211 – The Disappointment Dragon: learning to cope with disappointment by K I Al-Ghani
C0212 – The Panicosaurus: anxiety in children including those with Asperger Syndrome by K I Al-Ghani

Books for teens:

C0084 and C0148 – How to be Yourself in a World That’s Different: an Asperger Syndrome study guide for adolescents by Yuko Yoshia
C0093 – Can I Tell You About Asperger Syndrome by Jude Welton
C0206 – The Asperkids Secret Book of Social Rules: the handbook of not so obvious social guidelines for tweens and teens with Asperger Syndrome by Jennifer Cook O’Toole
L1614 – Asperger Syndrome, Adolescent and Identity: looking beyond the label by Harvey Molloy
L1675 – What Did You Say? What Did You Mean? An illustrated guide to understanding metaphors by Jude Welton
L6006 – Living Your Best Life With Asperger Syndrome by Karra Barber
L6291 – Freaks Geeks and Asperger Syndrome: a user guide to adolescence by Luke Jackson
L6349 – Acting Antics: a theatrical approach to teaching social understanding to kids and teens with Asperger Syndrome by Cindy Schneider

Just girls:

L6275 – Aspergirls: empowering females with Asperger Syndrome by Rudy Simone

Into adulthood

L6086 – Natural Genius: the gifts of Asperger Syndrome by Susan Rubinyi
L6258 – Developing Talents: careers for individuals with Asperger Syndrome and high-functioning autism by Temple Grandin
L6348 – Aspergers Syndrome and Sexuality: from adolescence to adulthood by Isabelle Henault
L6380 – Autism All-Stars: how we use our Autism or Asperger traits to shine in life by Josie Santomauro

Books for brothers and sisters:

C0179 – My Family is Different: a workbook for children with a brother or sister who has autism or Asperger Syndrome by Carolyn Brock

Kids Aspie novels:

C0082 – Blue Bottle Mystery by Kathy Hoopman
C0085 – Of Mice and Aliens by Kathy Hoopman
C0089 – Probably Still Nick Swansen by Virginia Euwer Wolff
C0132 – Haze by Kathy Hoopman
C0158 – Trueman Bradley Aspie Detective by Alexsi Maxim Russell
To borrow any of these items free of charge just email our librarian at or call 0800 328 1159.

Another happy winner!

Mr Wollaston and his chequeAnother happy supporter has won £1500 in Cerebra’s Count Me In lottery.

Mr Wollaston from Essex recently won the £1500 weekly prize in our Count Me In lottery. He told us “I haven’t decided yet what it’ll be spent on, but a holiday is high on the list!”

The lottery is easy to join and costs just £1.20 a week. Every week someone wins £1500. The money raised goes towards paying for direct, on-going support for families of children with neurological conditions and funding important research into causes, treatments and interventions.

If you’d like to learn more about our lottery click here or call 01267 244218. Count Yourself In and make a positive difference today!

Cerebra Perinatal Research Centre

father and sleeping babyWe take a look at how the Cerebra Perinatal Research Centre at Leeds University is making a difference in preventing neonatal brain injury and childhood disability.

For most mothers, awaiting the arrival of their baby is a safe and successful process, but we know that adverse outcomes can unexpectedly complicate one in five pregnancies. These outcomes include preterm (early, premature) birth, pre-eclampsia (high blood pressure), and low birthweight (growth restriction). Alone, or in combination, they may have serious consequences for the mother and/or her baby. Importantly, they are the leading causes of neonatal brain injury and later childhood disability (both cognitive and motor, ranging from poor academic achievement through to cerebral palsy).

Predicting which mothers are at risk and implementing preventive strategies would be ideal. However, identifying at-risk-mothers-to-be is difficult. To that extent, understanding of the underlying pathophysiology would enable targeted preventive solutions, but also lead to the generation of predictive tests and lead to successful change in the clinical setting.

Since 2007, and with the support of Cerebra, the Cerebra Perinatal Research Centre based at the University of Leeds has been engaged with identifying and disseminating effective and preventive strategies for adverse outcomes in pregnancy, through a research process that is outward-facing, collaborative, and transitional. They have established a research centre which has informed clinical practice, inspired multi-professional teaching and led to a reduction in one of the key adverse outcomes, preterm birth (over the period of Cerebra’s funding of the centre, this work has led to a fall in premature birth rates, with almost 350 fewer babies each year being born too soon).

The Cerebra Perinatal Research Centre conducts a varied programme of research that aims to prevent neonatal brain injury and childhood disability. The main focuses of the centre are four interrelated research themes that are summarised below.

1. Fetomaternal interface: Characterising normal and abnormal placental structure and function.
A healthy placenta is the key to an uncomplicated pregnancy, but our understanding of its structure and function remains limited. Each placenta reflects the environment its baby shared and, as such, has the potential to shed light on the causes of adverse pregnancy outcome. At present assessment of placental structure is confined to microscopic inspection. This yields a large amount of descriptive and qualitative information, but is limited in its ability to quantify abnormalities seen. By implementing innovative technology, researchers at the Cerebra Perinatal Research Centre have pushed these boundaries. Full thickness placental sections are stained, scanned and later reconstructed digitally. This allows targeted, large areas of the placenta to be surveyed with a view to make more accurate assessments. Furthermore, by using this digital platform the group is also able to capture sequential sections of the placenta tissue, virtually reassemble them and establish a 3D image, thus undertaking a comprehensive analysis of healthy and diseased placenta and compare for structural anomalies.

2. Early circulatory markers of pregnancy complications: Developing predictive strategies
The ability to predict at an early stage of pregnancy which expectant mothers would encounter complications later would allow intervention and preventing them from occurring. Such discovery research would also reveal new avenues for future exploration and enhance understanding of the mechanisms of both pregnancy complications and brain injury. To that extent the Leeds team is part of a worldwide collaboration: the Screening for Pregnancy Endpoints (SCOPE) biobank, which took over five years to complete. The wealth and depth of this biobank has been realised through over 100 SCOPE consortium-approved studies and has already led to 30 peer-reviewed publications. Most importantly it has led to the identification of PIGF (placental growth factor) as being the most important biomarker in the prediction of pre-eclampsia (high blood pressure during pregnancy). The group will continue to examine the role of potential biomarkers focusing on cell-free nucleic acids (microRNA and DNA) as markers of disease, due to their relative stability compared to many proteins. To that extent the centre has initiated the creation of a further local biobank the 1000 Women Study (an NIHR portfolio study) which will be used both in terms of establishing novel predictive tests, but also evaluate the reliability of those proposed elsewhere.

3. Maternal, fetal and neonatal immune function: Control, modulation and prevention of postnatal brain injury
The group has long had an interest in the role of immune system dysfunctions in the onset of major adverse pregnancy outcomes and the relationship between this and subsequent neonatal brain injury. Their focus has been on the major groups of cells involved in maternal immune defence, particularly macrophages, as it is becoming clear that these respond and behave differently in the mother and her baby, that they have different consequences dependent on their location, and that they were amenable to modulation. Researchers in the centre have developed and refined in vitro cell models to compare maternal and fetal/neonatal macrophage function. The group also carried out experiments to evaluate and characterise the effects these macrophages have on developing neurones, changes which may have long-lasting consequences. Scientists in the Cerebra Perinatal Research Centre hope that a better understanding of prenatal immune function, and how this evolves through advancing gestational age, birth and during early postnatal development, will also offer much needed insight into how brain development is affected by inflammation, and the ways in which the maternal, fetal and neonatal inflammatory/immune responses can be modulated and extrapolated to the clinical setting.

4. Systems biology: Towards the identification of novel therapeutic targets
The biological systems underlying pregnancy complications are complex, diverse and frequently interrelated. There are limitations of examining pathways and molecular interactions in isolation from each other, rather than considering the wider picture. To that extent the Cerebra Perinatal Research Centre is now implementing as systems biology approach to define the biological networks that characterise normal pregnancy and early neonatal life.

Supported by partnerships with Harvard Medical School and the newly established MRC-funded Medical Bioinformatics Centre recently awarded to the University of Leeds, the group has been able to create frameworks of interactions and identify key targets for novel therapeutic interventions (by applying mathematical formulas/algorithms and probability to represent complex biological functions).

The main objective of the Cerebra Perinatal Research Centre is to make a difference in the lives of expectant mothers and their children. Through collaborative, global, translational research they have made important advances in this aim, improving the prediction of mums at risk of early delivery and preventing it from happening, thus reducing the incidence and burden of brain injury acquired as a consequence of pregnancy complications.

To that extent, the centre’s research has always concentrated on ensuring effective clinical practice. Without successful implementation of research findings there will be no reduction in the numbers of babies born at risk of brain injury and later disability. Their work so far, focusing on preterm birth, has led to a sustained reduction in prematurity in Leeds and the expansion of the preterm prevention service at Leeds Teaching Hospitals Trust. They now have a tertiary service that runs two clinics each week for women at risk of preterm birth, and which receives referrals from all of Yorkshire and other centres within the North of England.

The group have always had several research students assisting on existing projects or initiating pilot studies. These include both undergraduate (BSc) and postgraduate (MD and PhD) students. It is these students that will ensure this work continues to influence practice and shape policy in the years ahead.

The next six years
Cerebra are delighted to be in a position to provide the core funding for the Cerebra Perinatal Research Centre at the University of Leeds for a further 6 years (between 2014 and 2019) to continue the innovative and translational work they do in the area of brain injury acquired through adverse pregnancy outcomes.

Books on Special Educational Needs

Library booksWe’re often asked for books or resources on special education. Here’s a list of titles we have on the SEN system, inclusion and special provision as well as those written for teachers and home schooling.

Special Educational Needs system

L6327 and L6383 – Choosing a School for a Child with Special Needs by Ruth Birnbaum
L6518 – The Journey Through Assessment: help for parents with special needs child by Antonia Chitty
L6341 – Surviving the Special Educational Needs System: how to be a velvet bulldozer by Sandy Row
L6322 – Guerilla Mum: surviving the special needs education jungle by Ellen Power
L6167 – Special Educational Needs a Parents’ Guide by Antonia Chitty
L6213 – Special Educational Needs Inclusion and Diversity by Norah Frederickson
L6370 – Key Issues in Special Educational Needs and Inclusion by Alan Hodkinson
L6342 – How To Reach and Teach All Students in the Inclusive Classroom by Sandra Rief
L6455 – Including Me: managing complex health needs in schools and early years settings by Jeanne Carlin
L6513 – How To Make School Make Sense: a parents’ guide to helping the child with Asperger Syndrome by Clare Lawrence
L1687 – Walk in Their Shoes: a day in the life of an spld student by Edwina Cole
L6033 – Meeting the Learning Needs of All Children: personalised learning in the primary school by Joan Dean

Special provision

L6501 – Personalised Learning for Young People with Profound and Multiple Learning Difficulties by Andrew Colley

Particularly for teachers

L6427 – A Practical Guide for Teachers of Students with Autism Spectrum Disorders in Secondary School Education by Debra Costley
L6412 – Transforming the Role of the SENCO: achieving the national award for sen co-ordination by Fiona Hallett

Home schooling

L6143 – Teaching at Home: a new approach to tutoring children with autism and Aspergers Syndrome by Olga Holland
L6430 – Autism and Flexischooling: a shared classroom and home schooling approach by Clare Lawrence

Another success for Legal Entitlements Project

Cerebra’s Legal Entitlements Research Project has provided advice on the reassessment of continence services for a little girl with cerebral palsy.

We were recently contacted by the mother of an eight year old girl, Jinny*, who has quadriplegic cerebral palsy. Jinny had previously been assessed as requiring five continence pads each day. Jinny’s mother, Mandy*, explained that she was concerned how the review of continence needs was being conducted.

A local NHS body had asked for Jinny’s continence needs to be reassessed, stipulating that this must take place over a three day period for fluid and a two week period for stools. Because the assessment had to be completed within four weeks, part of the assessment would have had to be undertaken while Jinny was at school. Mandy was worried about the assessment having to take place during term time. She was concerned that Jinny would be embarrassed and stigmatised if the assessment took place at school. In fact, she was considering withdrawing Jinny from school for two weeks in order to carry out the assessment at home.

Mandy was also worried because the NHS body wrote to her stating that if the reassessment was not undertaken within the specified timetable, there may be a delay in the delivery of continence products. Going further than this, an NHS employee told Mandy in a telephone conversation that if the assessment was not carried out in the stipulated time period, the continence supplies would be stopped. This was despite the fact that Jinny’s community nurse was willing to confirm that Jinny still needed the continence products.

After Mandy contacted Cerebra, a referral was made to the Cerebra Legal Entitlements Research Project at Cardiff Law School. Under this scheme, law students, under the supervision of academic staff and qualified solicitors, research relevant areas of the law and offer guidance for families who are not receiving their legal entitlements.

Mandy was advised that several legal issues had been identified. The main legal points were that:-

  • NHS bodies have a duty, under section 2 of the Health Act 2009, to take into account the individual needs of patients and to ensure that policies do not discriminate against patients, even inadvertently.
  • The National Institute for Health and Clinical Excellence (NICE) guidelines on paediatric continence services emphasise that treatment should be adapted to the needs and circumstances of children and their families; the views of children and their families should be taken into account; that continence problems can lead to bullying; and reducing unnecessary invasive examinations and procedures is a key clinical issue.
  • Department of Health good practice guidance advises that children should not be excluded from school activities due to incontinence and children’s dignity and independence should be protected through the implementation of appropriate systems of care which also avoid the risk of bullying.
  • Under the Equality Act 2010, it is unlawful discrimination to have a policy that disadvantages a disabled child and there is a duty to make reasonable adjustments for disabled people
  • Under the European Convention on Human Rights 1998, it is unlawful to fail to provide timely health support to a disabled child and to threaten its withdrawal.

Cardiff Law School sent its legal opinion to Mandy. This explained the legal points outlined above and highlighted that the way in which the NHS body had approached the review of Jinny’s continence services had fallen short of its public law obligations and that it had acted unreasonably. It also pointed out that it would be unlikely for the continence needs of an eight year old girl with quadriplegic cerebral palsy to diminish over time. The opinion concluded that:

“one would hope that the NHS body would undertake a fundamental review of the implementation of the policy and in the instant case demonstrate considerably greater flexibility (for example by allowing the assessment to be undertaken during the school holidays)”.

Mandy forwarded this opinion to the relevant NHS body. This clearly had an impact as she reported back that she was able to order the next supply of continence pads without the need for the assessment to take place during term time.

Can our Legal Entitlements Project help you? Find out more here.

* names have been changed.

GoTo Seat is a hit

Cerebra bear and the Goto seatSales of the brilliant GoTo seat are raising money for Cerebra.

We have kept you up to date with the development of one of our Innovation Centre’s design exploits – the joint venture between Leckey and ourselves to develop the Goto Seat.

Because the original design idea was ours we have a contract with Leckey called a Licensing Agreement. This means that every time they sell a Goto Seat they pay Cerebra a royalty fee to support the work we do and enable us to help more children and to develop even more innovative products.

The first quarterly sales figures are in and Cerebra have received £1192 in royalties! We are delighted and would like to thank everyone at Leckey for all their hard work developing our idea into such a successful product.

Sales of the the GoTo seat have continued to grow with the launch of the new size 2 seat which is suitable for children between 2 and 5 years of age. It offers an adjustable headrest, extended leg supports and a stronger backrest making it supportive enough for mild to moderate postural needs.

Cerebra Ambassador Chris Bennett and his son Elliott have been using the GoTo seat at dinner time instead of a high chair and told us “It’s brilliant – it makes dinner time more of a family thing as he’s closer to us and can eat from the table”.

We look forward to designing more products to add to the list and will keep you informed of all of our future developments!

Pain, Sleep and ASD

father and sleeping babyThis article examines the relationship between pain and sleep problems in children with Autism.
Research published in the February issue of Autism, suggests that a full assessment of pain and sleep problems in young people with Autism Spectrum Disorders may provide crucial information for medical and behavioural treatment planning.1
Health related problems (e.g. gastro-intestinal problems and asthma) are often found to co-exist with Autistic Spectrum Disorders and may be more prevalent in young people with ASD than in typically developing children. Previous research has suggested that pain and sleep problems are highly co-occurring and may increase the likelihood of a young person with ASD experiencing functional impairments and impact upon their quality of life. Research has shown that sleep problems increase when pain is present in young people with physical and intellectual disabilities.

The study is the first to examine the sleep-pain relationship in young people who are considered by their parents to have ASD, specifically looking at whether children with pain-related behaviours  are more likely to have sleep problems. Researchers anticipated that more pain-related behaviours would predict more sleep problems, as previous research has found for typically developing young people and those with developmental disabilities. Researchers also examined whether the way in which the young person expressed the pain could predict sleep problems.

To investigate these relationships, researchers recruited 63 young people (aged 3-18 years) with Autistic Spectrum Disorders (ASD) to the study. They used the non-communicating children’s pain checklist revised (NCCPC-R), a widely used parent-report measure of pain in individuals with communication difficulties, to identify pain behaviours. Subscales used to measure pain included vocal, social (e.g. seeking comfort), facial, activity (e.g. agitation), body (e.g. protecting body part), physiological (e.g. sweating) and eating/ sleeping (sleep problems or disinterest in food). The Children’s Sleep Habits Questionnaire (CSHQ), a parent report measure, was used to measure behavioural and medical sleep problems, such as bedtime resistance, sleep onset delay, sleep duration, sleep anxiety, night waking, parasomnias (e.g. nightmares/night terrors) and sleep disordered breathing.

Sleep problems predicted by pain related behaviours

The analysis of the NCCPC-R and CSHQ data found extremely high levels of both pain and sleep problems in the young people with ASD who took part, with over 90% of respondents scoring at clinically significant levels on both measures. The researchers’ hypothesis proved largely correct: the study found thatmore pain-related behaviours experienced during the previous week indeed predicted more over­all sleep problems. However the study also suggested that not all sleep problems can be predicted by pain related behaviours consistently. The types of sleep problems most consistently predicted by pain related behaviours were problems with sleep duration, parasomnias and sleep disordered breathing.

Pain communication type as a predictor of sleep problems

Sleep problems could be predicted by particular ways of communicating pain. Problems with sleep duration were predicted by social communication of pain, for example comfort seeking. However, the researchers suggest that the social communication of pain may predict shorter sleep duration because of the nature of the social communication behaviour interfering with getting off to sleep.

The presence of parasomnias (nightmares/night terrors) could be predicted by facial communication of pain (the most common observable form of pain behaviour). However the researchers suggest it is possible that the grimacing and gnashing that takes place during parasomnias may increase the likelihood of mothers reporting such behaviour. It is suggested that future research examining this relationship in more depth would be useful.

Sleep disordered breathing was predicted by vocal communication of pain. However like parasomnias, the behavioural presentation of sleep disordered breathing (e.g. gasping), may have some overlap with pain behaviours communicated vocally. The researchers suggest that future studies should further examine how pain-related behaviours are communicated among young people with ASD and various respiratory complaints as compared to those without respiratory complaints.

Clinical implications

Despite the limitations to the study, such as the relatively small sample size, lack of a comparative group and the reliance on parents’ data collection and diagnosis of ASD, the authors suggest that the relationship between sleep problems and pain behaviours has important medical and clinical implications for young people with ASD. Health problems that cause pain or discomfort in young people with ASD may hinder any response to behavioural interventions and pharmacological treatments as well as their day to day functioning. The research suggests that paediatricians and clinicians should take pain-related behaviours into account when assessing and planning treatment for young people with ASD.

The findings are also useful for parents as they may benefit from taking note of their child’s sleep health if the child also has high levels of pain-related behaviour, because sleep disordered breathing, parasomnias and shorter sleep duration tend to be more prevalent in young people with ASD and can have a negative effect on daytime functioning.

The recognition of the relationship between pain and sleep in young people with ASD may help in the design of interventions based on indicators of pain, for example identifying a young person’s socially communicated pain could assist parents and clinicians design interventions (e.g. to improve the young person’s self-soothing abilities).

Future directions

Future studies would benefit from collecting data over multiple time periods. This could help to understand any causal relationships between pain and sleep problems and help to identify factors which may affect them, such as parenting style or parental stress. Utilising comparison groups would also indicate if the relationships between pain and sleep identified are actually unique to young people with ASD. Additionally, more investigation of how pain and sleep problems relate to each other and the effect on daytime functioning of young people with ASD would be able to further inform assessment procedures, and have an impact on the young people’s qual­ity of life.

  1. Tudor, M.E., Walsh, C.E., Mulder, E.C., Lerner, M.D. (2014) Pain as a predictor of sleep problems in youth with autism spectrum disorders. Autism [Online] Available from

If you are interested in sleep and Autism, you may find this webinar by Dr Ruth O’Hara, shown on Sfari, an informative watch.