Positive stories about autism

Melanie Cosgrave and her childrenDo you have a positive story about someone you know with autism?

My name is Melanie Cosgrave and I am 43 years old.  I am married and have three children, two girls and a boy.  I used to be a primary school teacher and loved working with children.  When I had my children I decided to have a career break but have yet to go back.  I am lucky that I live in a nice quiet village in the North of England.

I have two children on the autistic spectrum, both at the opposite ends so I have had a very sharp learning curve to learn all I can about all aspects of autism.  My daughter is high functioning Aspergers and I am constantly amazed at her capacity for knowledge while totally struggling with the social side of life.  My son who will be ten this year ( I can’t believe it) is severly autistic, struggling to communicate and has very limited speech and attends a special school.

Over the years I have collected and read many books that have helped me and my family on our journey.  My first and one of my favourites being ‘Ten Things Every Child With Autism Wishes You Knew’ by Ellen Notbolm and also ‘The Autism Revolution’ by Martha Herbert.  There are so many books out there to give information and to help educate and for a while I have been thinking about the kind of book I would like to read but haven’t found.

Sometimes there are days that seem tough and that’s when I thought I would like to read a light hearted book filled with positive short stories about autistic people.  Something that is easy to pick up and you don’t have to be thinking too hard about.  A book that family and friends could buy to help someone they know who may just have had a diagnosis in the family, or that grandparents can pick up for a bit of reassurance.  So I thought that I would try and write that book.

So I would love to  hear from anyone who is on the autistic spectrum or has a family member or friend that you have a positive story about.  It can be a funny story or kind or happy, just something positive.  And it needs to be short.  If you could send your story to  autism.positive@btinternet.com that would be great.

Thanks very much.

Melanie Cosgrave

Books in the Library for Older Kids

Library booksCerebra has a large selection of books in our postal lending library for children and their siblings to read to help them understand their disability. We list some of the more popular books.

Last month we are featuring books for younger children and this month we are featuring books for older children.

You can borrow the children’s books on behalf of your child, as with the sensory toys. Sorry, but children can’t be library members themselves.

The full list of children’s books in our library can be found on our library pages.

Disability info for older children:

C0091  Ten Things Every Child With Autism Wishes You Knew
C0149  A Book About What Autism Can Be Like
C0141  Do You Understand Me? My life my thoughts my autism spectrum disorder
C0193  Explaining Autism
C0093  Can I Tell You About Asperger Syndrome
C0178  Inside Aspergers Looking Out
C0147  All Cats Have Aspergers
C0181  What is it Like to Be Me? A book about a boy with Aspergers
C0206  The Asperkids Secret Book of Social Rules
C0084  How to be Yourself in a World That’s Different: an Aspergers study guide to adolescence
L6291  Freaks Geeks and Asperger Syndrome
C0191  Sensory Smarts (sensory processing disorder)
L6050  Touch and Go Joe: an adolescent’s experience of OCD
C0061  Jumping Johnny Get Back to Work (ADHD)
C0117  The Girls Guide to ADHD
C0216  Can I Tell You About ADHD
C0137  All About Brain Tumours
C0174  Can I Tell You About Epilepsy
C0194  Explaining Epilepsy
C0190  Tic Talk (tourettes)
C0214  Can I Tell You About Tourette Syndrome
C0195  Explaining Down Syndrome
C0196  Explaining Cerebral Palsy
C0215  Can I Tell You About Dyspraxia
C0180  Living With Disability (all aspects of life with a disability)
Growing up:

C0153  Personal Hygiene: what’s that got to do with me? (boys and girls)
L6323  Taking Care of Myself: a hygiene and puberty personal curriculum for young people with autism (boys and girls)
L6483  The Boys Guide to Growing Up: choices and changes during puberty
C0218  Girl Talk: a survival guide to growing up
Fiction for older kids:

C0158  Trueman Bradley Aspie Detective
C0182  The Curious Incident of the Dog in the Nighttime
C0082  Blue Bottle Mystery (an aspie novel)
C0085  Of Mice and Aliens (an aspie novel)
C0192  Rules (having a brother with autism)
Books for siblings:

C0068  Being the Other One
C0107  The Sibling Slam Book
C0135  I’m a Teenager Get me Out of Here
C0217  Everybody is Different: a book for young people who have brothers or sisters with autism
C0179  My Family is Different: a workbook for children with a brother or sister who has autism or Asperger Syndrome

The Cerebra Centre for Neurodevelopmental Disorders

cerebra-centre-logoIn this article we outline the research being carried out at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham.

Over the last 6 years (2008-2013), Cerebra has provided the core funding for The Cerebra Centre for Neurodevelopmental Disorders, a research centre based at the School of Psychology at the University of Birmingham, headed by Professor Chris Oliver.

The aims of the centre for the first six years of funding (2008-2013) were:

  • to carry out longitudinal, cross syndrome data collection to describe and understand the genetic, physical, neurological, cognitive and behavioural characteristics of children and young adults with genetic disorders associated with neurodevelopmental disorders
  • to conduct exploratory and hypothesis-driven experimental research projects that seek to discover the causes of and effective interventions for behavioural, cognitive and emotional problems in children and young adults with genetic disorders, intellectual disability and autism spectrum disorder
  • to disseminate research findings of relevance to all children and young adults with neurological impairments, intellectual and developmental disabilities who show behavioural, cognitive and emotional problems.
  • To read more about the current and past research projects, please visit the centre’s project pages, or read their annual report on the Cerebra website.  In this video a researcher at the centre explains the impact their research has for children with neurodevelopmental disorders and their families.

    The next 6 years

    Cerebra are delighted to be in a position to provide core funding for the Cerebra Centre for Neurodevelopmental Disorders for a further 6 years (2014-2019). The research taking place will continue to focus on understanding and ameliorating the clinically and socially significant problems that are experienced by children with neurodevelopmental disorders and their families. The centre will focus on three areas of research:

  • refining the behavioural phenotypes of genetic disorders
  • understanding the causes of clinically and socially significant problems experienced by children with neurodevelopmental disorders and their families
  • developing an early intervention strategy to prevent the development of these problems.
  • Understanding and reducing sleep disorders in children with developmental delay

    Cerebra have awarded additional funding to the centre to conduct research that will describe and assess sleep disorders in three groups of children at the highest risk for severe and persistent sleep problems:

  • children with Angelman syndrome
  • children with Smith-Magenis syndrome
  • children with intellectual disability and autism spectrum disorder.
  • The contrasting nature of the sleep disorders will allow the project to:

  • identify critical points for intervention that are disorder-sensitive
  • compare and contrast the effects of different types of sleep disorders on parental wellbeing and physical health
  • develop and trial disorder-sensitive sleep assessment protocols
  • evaluate the effects of behavioural management in proof of principle studies
  • develop cloud and internet resources to facilitate assessment, sleep consultancy, intervention and dissemination.
  • The study of sleep disorders in these three groups affords the opportunity to describe the relationship between different types of sleep disorders in children and their relationship to disturbed sleep, stress, poor physical health and coping in parents. These research findings will be invaluable to inform the Cerebra Sleep Service.

    Further Inform Neurogenetic Disorders (FIND) website development

    Cerebra also co-fund a website project with the Economic and Social Research Council (ESRC), led by the Cerebra Centre for Neurodevelopmental Disorders, that aims to get these research findings about rare genetic syndromes to families and professionals quickly and effectively. The website is named ‘Further Inform Neurogenetic Disorders (FIND)’, and will be launched in September 2014. Keep an eye out for the launch!

    For more information on FIND and the services provided please click on this link to be directed through to the website:  http://www.findresources.co.uk/about-us

    CIC News – June 2014

    We catch up with the guys at the CIC and find out what they’ve been up to lately.

    CIC have been busy designing and building products to help our young members and their families as usual! The requests for design challenges have been coming in steadily but there is always room for more! If there is anything we can help you with, please feel free to give us a call. Remember that we are here to help with anything product related, for example we could help source products, or if you have an idea for a solution that could help your child we should be able to design and make something…..and if you simply have a problem with no idea for a solution…those are the ones we love the best- give us a call or drop us a line and we will rise to the challenge!

    Here are a few recent examples of products that we have been working on.

    Weighted Capscic-cap
    CIC helped with a couple of recent requests for weighted caps to help with Tourettes and Autism. The families kindly supplied hats that had been tried for size and were the correct style and brand (very important consideration for our young members!) and CIC used their carefully developed method of making very slim flexible weighted pads to fit into the hats. From the outside you would never know there is any difference in the hat, but the resultant behavioural changes appear to be fantastic!

    “Hi Ross, just to let you know Jamie’s hats arrived yesterday. He is so happy with them. He wore his blue one in class today and he said it helps him concentrate. He is feeling a lot happier in himself. Thank you so much for taking the time to make them. Jamie will be sending you a card this week, thanks again D”

    An extra tall baby-gate
    This request was for a stylish gate that would enable Mum, Sinead, to know that her son is safe and well inside his room and so removing the risk of him getting to the stairs, whilst still being able to see each other through and decorated with Ben 10 images. As usual, the gate had to fit the style of the house and not have a negative impact on the environment or look too restrictive. We decided on a simple form with a curved top to break up the shape and then found some lovely images of Harvey’s favourite TV character.

    “Hello I received the gate and it is wonderful I cannot thank you enough also Harvey loves it with the ben10 stickers thank you very much for your time and effort. I have made a donation to cerebra thank you again x S”

    CIC writing clopeThe CIC Writing Slope
    Something that we have been working very hard on recently is the design of our new writing slope. You may remember that we told you about one that we had made for a young lady last year, and from the response to that story we have now made another 30 units! The writing slope is made so that it can help children with writing and reading by helping to hold the paper and books steady and in a useful position. It has many innovative features such as: Adjustable angle controlled with a gas spring, a pen holder which negates the use of pen lids, magnetic reading and writing ledges and a carry handle.

    Here is some of the feedback we have had so far:cic-writing-slope

    “Thank you so much for Jack’s writing table, it is brilliant. I will get a donation sent to you and also a photo!”

    “I am so very grateful for the beautifully crafted writing slope that arrived for Sim this morning! He is going to be incredibly excited when he gets home from school! Sim is 5 and a half and has Down’s Syndrome. He finds it very difficult to read books or try and draw/write when paper is placed directly on the table and we have been searching for a slope that enables him to do this, but have never managed to find one that hasn’t got a big lip, sits too close to the table, etc. The one you have made is absolutely fantastic and will be PERFECT! I love the attention to detail! The carry handle, the magnetic strips, the plastic tabs to keep books open, the pen slots, etc. Please do thank the team for all the hard work that has gone in to producing this for him. We really are immensely grateful.”

    If this is of interest to you, please give us a call on 01792 483688 to discuss your requirements!

    Tom’s Playring

    Tom and his playring

    Tom and his playring

    Tom’s mum sent us a great picture of the Playring thanks to Cerebra.

    The charity provided a Playring for Tom from the toy library, as well as helping them with a GoToSeat.

    As you can see in their pictures, Tom loves both. He has developmental delay, but the Playring and GoToSeat help him sit up and take part in his physio to aid his development.

    It also means he can join the family and enjoy shopping trips.

    “He loves being in the trolley,” his mum Laura told us. “We’re so grateful to the charity.”

    The GoToSeat was developed by Leckey and our Cerebra Innovation Centre. Take a look around our website to learn more.

    Don’t forget that Cerebra receives no government funding – all of this is thanks to your support!

    Cycle ride for Cerebra

    Group from Carmarthen Town AFC getting ready to start cycle rideA group of cyclists are setting off on a cycle ride to raise money for children with neurological conditions.

    The group, made up of Carmarthen Town AFC supporters and colleagues, are heading off for a 250 mile ride from North Wales to South Wales to raise money for Cerebra.

    The charity has been named the Carmarthen Town AFC’s charity of the year.

    Emlyn Schiavone, Phil Williams, Paul Evans, Ceri Rees, Ashley Williams, Moira Gorman and Anthony Parnell are riding in memory of Nigel Williams, former treasurer of Carmarthen Town AFC. The group holds two rides every year in his honour.

    You can sponsor Anthony, Paul or Ashley through JustGiving. Cerebra receives no government funding, so every penny raised through events like this really does make a positive difference!

    If you’d like to hold an event to raise money for us contact our community fundraising team by calling 01267 244 222.

    Research update – June 2014

    UpdatepicA selection of recent news, research, reports and events.

    In the news

    Autism resolution passed at WHA Research

    Autism reports that in an immediate board approval, the World Health Assembly (WHA) – the decision making body of the World Health Organisation (WHO) – passed recently a resolution regarding autism, placed by Bangladesh last year. The assembly urged member states to include the needs of individuals affected by autism spectrum and other developmental disorders in policies and programmes related to child and adolescent health and development and mental health.

    Autistic boys exposed to higher levels of hormones in womb, study finds

    The Guardian reports that research on children in Denmark has found that boys with autism were more likely to have been exposed to higher levels of hormones in their mother’s wombs than those who developed normally. The findings add to a growing body of evidence that the biological foundations of autism are laid down well before birth and involve factors that go beyond the child’s genetic make-up. The results may help scientists to unravel some of the underlying causes of autism and explain why boys are four to five times more likely to be diagnosed with the condition, which affects around one percent of the population.


    Timing is everything: scientists control rapid re-wiring of brain circuits using patterned visual stimulation

    In a recent study published in Science, scientists from Montreal Neurological Institute at McGill University and the McGill University Health Center show for the first time how the brain rewires and fine-tunes its connections differently depending on the relative timing of sensory stimuli. The researchers have been studying the formation of brain circuitry during development to better understand healthy brain wiring. They also hope such studies will lead to development of more effective treatments for nervous system injuries, as well as therapies for neurodevelopmental disorders such as autism and schizophrenia.

    Twin study set to explore autism, attention deficit overlap

    Sfari reports that a new Swedish twin study plans to search for the shared genetic and environmental origins of autism and attention deficit hyperactivity disorder (ADHD), which are often mistaken for each other. The new project aims to assess identical twin pairs using a variety of measures, including behavior and brain imaging. The researchers plan to compare the characteristics of the discordant twin pairs (meaning only one of the two has a disorder) with those of typically developing twin pairs.

    Risk of brain injury is genetic

    Researchers have identified a link between injury to the developing brain and common variation in genes associated with schizophrenia and the metabolism of fat. Scientists at the University of Edinburgh, Imperial College London and King’s College London studied genetic samples and MRI scans of more than 80 premature infants at the time of discharge from hospital. The study builds on previous research, and suggests that premature babies’ risk of brain injury is influenced by their genes, a study suggests. Researchers add that future studies could look at how changes in these genes may bring about this risk of – or resilience – to brain injury.

    Clinical research: Angelman gene variants alter symptoms

    Sfari provide a brief summary of a study published on 19 March in Research in Developmental Disabilities, which reports that the nature of the mutation that leads to Angelman syndrome, a disorder characterized by speech impairment and developmental delays, affects the disorder’s presentation.

    Brain Methylation Map Published

    The Scientist reports on research published on 4 July in Science that shows that epigenetic modification varies greatly over the course of development but is remarkably consistent between individuals and between mice and humans. Researchers at the Salk Institute in San Diego have made an extensive map of several types of methylation in the brains of mice and humans, hoping to understand the role of epigenetic changes in the brain as mental illnesses took hold in humans.


    Sensory issues and autism: an insider’s guide

    SEN provides a summary by Paul Isaacs that outlines some of the main sensory difficulties faced by people with autism and how they affect their everyday life.


    Towards a Positive Future

    A one-day annual national conference for parents of children with special educational needs and the professionals who support them. Central London, Thursday 19th June 2014.

    Engage in their future National Conference

    An exceptional programme of speakers and workshops will be delivered around the theme of ‘Improving life chances for children experiencing behavioural, emotional and/or social difficulties (BESD)’. Wyboston Lakes, Cambridge, Thursday 3rd and Friday 4th July.

    Royal Masonic Trust for Girls and Boys support Cerebra

    father and sleeping babyThe Royal Masonic Trust for Girls and Boys has made an incredibly generous donation of £12,000 towards Cerebra’s Sleep Service through their Stepping Stones scheme.

    Cerebra improves the lives of children and families living with a neurological condition through practical support and funding vital research.

    One of our most needed services is our Sleep Service. Parents and carers of children with neurological conditions often have to deal with severely  disrupted sleep which can make an already challenging situation that much harder.

    Cerebra’s sleep practitioners provide families with advice on a range of sleep issues in children such as settling difficulty, night waking, early rising, sleeping alone, bedwetting, night terrors and anxiety.

    The generous grant from the Royal Masonic Trust for Girls and Boys will enable us to continue funding this much needed source of support and make a positive difference to thousands of families. We are extremely grateful for their support.

    The Stepping Stones scheme is one way in which Freemasons in England and Wales support children in their communities who are most in need. You can find out more about the scheme here.

    Actress Samira Mohamed Ali is our new ambassador

    Samira Mohamed AliWe are delighted to announce actress Samira Mohamed Ali will be an Ambassador for Cerebra.

    Samira is an award-winning International Actress and Brands Model who is currently working with many leading global companies. From a very young age, Samira started off as a model and led many high profile campaigns through her entrepreneurial skills. Not only was Samira known as a model, but she was also seen as a strong businesswoman, creating new marketing and innovative strategies for clients within the commercial world.

    While she was still modeling, she worked part time for the world’s largest international bank (HSBC), becoming onequote-samira of the youngest bankers in the UK. At this point, aged just 21, Samira was given her first opportunity to test her presenting skills – interviewing top banking directors and financial executives for HSBC’s Internal Communications Department, a TV channel aired once a week to all HSBC branches across the UK and US.

    Samira is currently the Ambassador for FilmInWales and works with the Welsh Government in attracting co-productions and inward investment to Wales from Bollywood and the US. Samira has recently signed as a lead role in a major movie in India and will also star as one of the lead roles for the ‘Dr Who’ movie – the Largest Fan Funded Movie ever in the US at the beginning of 2015. Her performance in Award Winning Molly Crows Movie received great reviews from film critics and the recent premiere gained support from Hollywood Actor Michael Sheen.

    quote-chrisSamira has just returned from the US where she was this year’s UK Ambassador for BritWeek Miami and co-hosted the UKTI GALA Awards with Sean Yazbeck and presented the Award to CEO of Brightstar Corp. Marcelo Claure, partner in David Beckham’s new Miami League of Soccer.

    The Neath born actress, said “This is a real privilege and honor to have been asked to be an ambassador for such a unique charity. I am very passionate about Cerebra as it does exceptional work with supporting children and their families and I hope it continues to grow year on year so that the service can be offered to more people across the UK”.

    On 29th May Samira visited the charity’s headquarters in Carmarthen to meet staff and families who are currently being supported by the charity. Chris Jones, CEO of Cerebra said “Having Samira as our Ambassador will help us raise the awareness of the charity throughout the UK and internationally. It is very exciting to have Samira representing us and especially at our 2014 Awards ceremony in London for the children to be recognized and presented by such an inspirational figure that is also very supportive of us here in Carmarthen. We are very grateful to Samira for committing her time to us in between her busy filming schedule.”

    Take a look at a video from the day and find out why our ambassadors are so important to us.


    Family Fun from Circus Starr

    CircusA wonderful time was had by families in Sheffield recently at one of our Cerebra day’s out.

    Thanks to Circus Starr families in Sheffield had the chance to enjoy a fun-filled day out, including hilarious antics from everyone’s favourite clown, Nicolino, ever-more daring Chinese Pole and Aerial Strap performances from the fabulous Serik Brothers as well as spectacular knife balancing acts from the mesmerising Miss Lara.

    Circus Starr is a touring circus troupe boasting world-class, professional artists from across the globe. It was first founded in 1987 to help raise much needed funds for local charities whilst providing free seats for thousands of disadvantaged, disabled or vulnerable children.

    Cerebra regional support officer Lynne Bowker organised the event, giving families the opportunity to enjoy something special.

    “Taylor and Alice look like they had a great time,” she told us. “Their dad also happened to be the Magicians Apprentice and was even more excited than they were!”

    Thanks to your donations we’re able to organise events like this. Keep an eye out for future days out.