Tag Archives: Autism

Autism Awareness Bestsellers in our Library

autism booksWe thought you would like to know that Jessica Kingsley’s (Publishers) ‘Autism Awareness Bestsellers’ are all available in the Cerebra Library:

The Complete Guide to Asperger’s Syndrome by Tony Attwood
2008 ISBN 9781843106692

This is the definitive handbook for anyone affected by Asperger’s syndrome. It brings together information on all aspects of the syndrome for children through to adults. Drawing on case studies from Attwood’s extensive clinical experience, and from his correspondence with individuals with AS, this book is authoritative and extremely accessible.
L6311 in Cerebra Library

LEGO-Based Therapy: how to build social competence through LEGO-Based Clubs for children with autism and related conditions
2014 ISBN 9781849055376

A comprehensive guide to setting up LEGO Therapy groups to promote social skills in children with autism spectrum disorders and related conditions through group LEGO building. It fully explains the approach and gives advice on strategies for successfully seeing children through from ‘LEGO Helper’ to ‘LEGO Genius’.
L6621 in Cerebra Library

Aspergirls: empowering females with Asperger Syndrome by Rudy Simone
2010 ISBN 9781849058261

Rudy Simone guides you through every aspect of both personal and professional life, from early recollections of blame, guilt, and savant skills, to friendships, romance and marriage. Employment, career, rituals and routines are also covered. Simone rejects negative views of Aspergirls and empowering them to lead happy and fulfilled lives.
L6275 in Cerebra Library 

The Red Beast: controlling anger in children with Asperger’s Syndrome by Haitham Al-Ghani
2008 ISBN 97818343109433

This vibrant fully illustrated children’s storybook is written for children aged 5+, and is an accessible, fun way to talk about anger, with useful tips about how to ‘tame the red beast’ and guidance for parents on how anger affects children with Asperger’s Syndrome.
C0176 in Cerebra Library 

All Cats Have Asperger Syndrome by Kathy Hoopman
2006 ISBN 9781843104810

This book takes a playful look at Asperger Syndrome, drawing inspiration from the feline world. Touching, humorous and insightful, this book evokes the difficulties and joys of raising a child who is different and leaves the reader with a sense of the dignity, individuality, and potential of people with AS.
C0147 in Cerebra Library 

Can I Tell You About Asperger Syndrome? a guide for friends and family by Jude Welton
2003 ISBN: 9781843102069

Meet Adam, a young boy with AS. He helps children understand the difficulties faced by a child with AS, telling them what AS is, how it feels to have AS and how they can help by understanding their differences and appreciating their many talents. This illustrated book is an excellent starting point for family and classroom discussions.
C0093 & C0233 in Cerebra Library

Parenting a Child with Asperger Syndrome: 200 tips and strategies by Brenda Boyd
2003 ISBN 9781843101376

Brenda is mother to thirteen-year-old Kenneth, author of Asperger Syndrome, the Universe and Everything. Brenda discusses parents’ reaction to their child’s AS and gives advice on how better to understand ‘Planet Asperger’. This book helps parents to respond positively to the challenge of AS and find the ‘treasure’ in their child’s way of being.
L6279 in Cerebra Library 

Freaks, Geeks and Asperger Syndrome: a user guide to adolescence by Luke Jackson
2002 ISBN 9781843100980

Drawing from his own experiences and gaining information from his teenage brother and sisters, Luke Jackson wrote this enlightening, honest and witty book in an attempt to address difficult topics such as bullying, friendships, when and how to tell others about AS, school problems, dating and relationships, and morality.
L6291 in Cerebra Library

Borrowing something from the library is free, please email janetp@cerebra.org.uk to request a book or for more information about the library service.

Books in the library on autism

Library booksWe have a great number of books on autism in the library.  Here are just a few of the most popular ones:

  • L6178 – A Will of His Own: reflections on parenting a child with autism by Kelly Harland
  • L6133 – Adolescents on the Autism Spectrum by Chantal Sicile-Kira
  • L6179 – Animal Assisted Interventions for Individuals with Autism by Merope Pavlides
  • L6428 – Autism Spectrum Disorders Through the Life Span by Digby Tantam
  • L6015 – Autism Spectrum Disorders: the complete guide by Chantal Sicile-Kira
  • L6359 – Autism the Facts by Simon Baron-Cohen
  • L6221 – Autism: a very short introduction by Uta Frith
  • L6027 – Autism: facts and strategies for parents by Janice E Janzen
  • L6496 – Carly’s Voice: breaking through autism by Arthur Fleischmann
  • L6337 – Children with Autism: a parents’ guide by Micheal D Powders
  • L6583 – Colour Coding for Learners with Autism: a resource book for creating meaning through colour at home and school by Adele Devine
  • C0193 – Explaining Autism by Robert Snedden
  • L6581 – Gardening for Children with Autism Spectrum Disorder and Special Needs by Natasha Etherington
  • L6514 – George and Sam by Charlotte Moore
  • L6256 – Growing up Severely Autistic: they call me Gabriel by Kate Rankin
  • L6595 – Navigating the Medical Maze with a Child with Autism Spectrum Disorder by Sue Ming
  • L6255 & L6332 – Playing Laughing and Learning with Children on the Autism Spectrum by Julia Moore
  • L6532 – Raising to New Heights of Communication and Learning for Children with Autism by Carol Spears
  • L6498 – Silently Seizing: common unrecognised and frequently missed seizures and their potentially damaging impact on individuals with autism spectrum disorders by Caren Haines
  • L6392 – Sleep Difficulties and the Autism Spectrum Disorder by Kenneth Aitken
  • L6405 & L6614 – Speak Move Play and Learn with Children on the Autism Spectrum by Lois Jean Brady
  • C0091 – Ten Things Every Child with Autism Wishes You Knew by Ellen Notbohm
  • L6526 – The Anger Box: sensory turmoil and pain in autism by Phoebe Caldwell
  • L6491 – The Autistic Brain: thinking across the spectrum by Temple Grandin
  • L6495 – The Reason I Jump: one boy’s challenge from the silence of autism by Naoki Higashida
  • L6077 – The Siege: a family’s journey into the world of an autistic child by Clara Claibourne
  • L6186 – Through the Eyes of Aliens: a book about autistic people by Jasmine Lee ONeill
  • L6267 & L6308 – Understanding Autism for Dummies by Stephen Shore
  • L6207 – Voices From the Spectrum: parents, grandparents, siblings, people with autism by Cindy Ariel
  • L6174 – Why Does Chris Do That? by Tony Attwood
  • L6591 – Yoga Therapy for Children with Autism and Special Needs by Louise Goldberg

DVDS

  • AV6399 – A is for Autism by Tim Webb
  • AV6136 & AV6539 – Autism and Me by Rory Hoy
  • AV6397 – Living Along the Autism Spectrum

If you would like to borrow any of these books, it is free, just contact Jan on janetp@cerebra.org.uk

We also have many books on High Functioning Autism and Aspergers, that are not necessarily covered in this list.

Autism in genetic syndromes: implications for assessment and intervention

ASD in genetic syndromesDr. Jo Moss and Prof. Chris Oliver, The Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham.

This briefing has been prepared to help parents and carers of children with genetic syndromes understand how and why autism spectrum disorder or related characteristics might be seen in children with genetic syndromes and what this might mean for assessment and intervention. This briefing provides a summary of information presented in a peer reviewed scientific article published in 2009and an academic book chapter published in 2011.

Download Autism in genetic syndromes: implications for assessment and intervention PDF

 

1. Moss, J. and Howlin, P. (2009). Invited Annotation – Autism spectrum disorders in genetic syndromes: Implications for diagnosis, intervention and understanding the wider ASD population. Journal of Intellectual Disability Research, 53, 852-872.

 2. Moss, J., Howlin, P and Oliver, C. (2011). The assessment and presentation of Autism Spectrum Disorder and associated characteristics in individuals with severe intellectual disability and genetic syndromes. The Oxford Handbook of Intellectual Disability and Development. Editors: Jake Burack, Robert Hodapp, Grace Iarocci and Edward Zigler. New York: Oxford University Press.

First published 2012. This edition 2015. Review date 2018.


Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

Jack Loves his New Sensory Equipment

Jack Bull in his dark den

Jack Bull in his dark den

Little Jack loves his new sensory toys, funded by Cerebra.

Five year old Jack Bull has Autistic Spectrum Disorder as well as some sensory problems. His condition means that Jack is non verbal and is very over active, often finding it very difficult to relax. This had meant that family life was often difficult, especially when it came to bed time!

Jack’s mum Claire contacted Cerebra and we were able to help to provide funding for sensory equipment for Jack through our Grant Scheme. This meant that Claire was able to purchase a Dark Den and starter projection kit for Jack and the positive effect that this has had on Jack is already noticeable.

Claire told us: “The Dark Den enables Jack to have his own dark, calm place to retreat to and desensitise. We put in the fibre optic strands and some cushions inside along with his weighted blanket as Jack loves to burrow away and he enjoys his own space. Jack is very visual and he is mesmerised by the display from the projector. He settles down, relaxes and enjoys the various visual effects and images. He then seems calmer and more chilled out. This is perfect to relax Jack before bed as he struggles to switch off. We use the projector everyday without fail.”

As a result of using the sensory equipment daily, Jack’s behaviour has shown remarkable improvement. Not only has this improved family life but Jack himself seems a lot happier now that he has his own space in which to relax.

Cerebra’s grant scheme funds up to 80% of the cost of equipment and services to help make life easier and more enjoyable for children with neurological conditions. We provide a range of equipment from trikes to walking frames – anything that will directly benefit your child and shouldn’t be provided by someone else such as the NHS, Social Services, LEA.

You can find out more about our grants scheme here.

Daniel Shows off Weighted Cap

???????????????????????????????Daniel O’Connor has received a weighted cap specially made by Cerebra’s own Innovation Centre.

Weighted items can be very useful for children with sensory issues and conditions such as Autism as they can help them to feel grounded. This can help to increase a child’s concentration span which has clear benefits in a school setting.

The problem that many parents encounter is that weighted items are not always readily available or are unsuitable for their child’s specific needs.

That’s where the Cerebra Innovation Centre (CIC) comes in! The team recently created a weighted hat for nine year-old Daniel O’Connor who was diagnosed with Asperger’s Syndrome in February 2014.

Daniel found it difficult to concentrate in class often becoming quite fidgety. He started using a weighted blanket which was given to him by one of his teaching assistants and would often put it on his head, saying that it “helped him concentrate”.

His mum Julie contacted Dr Ross Head at the CIC and explained the situation. It seemed that creating a weighted cap for Daniel was the best solution!

The team took one of Daniel’s own caps and stitched in a specially developed a rubber-like sheet material that is tough and flexible, yet dense enough for even the thinnest of layers to offer enough weight for the cap.

The cap has had a huge positive impact on Daniel’s life and he says that when he is wearing it, the hat helps him to concentrate, and he can think for longer.

Julie said: “I can’t thank Cerebra and Dr Ross Head enough, and as for Daniel, the cap looks a lot better on him than wearing a blanket on his head!”

Daniel Shows off Weighted Cap

Daniel and his weighted cap

Daniel and his weighted cap

Daniel O’Connor has received a weighted cap specially made by Cerebra’s own Innovation Centre.

Weighted items can be very useful for children with sensory issues and conditions such as Autism as they can help them to feel grounded. This can help to increase a child’s concentration span which has clear benefits in a school setting.

The problem that many parents encounter is that weighted items are not always readily available or are unsuitable for their child’s specific needs.

That’s where the Cerebra Innovation Centre (CIC) comes in! The team recently created a weighted hat for nine year-old Daniel O’Connor who was diagnosed with Asperger’s Syndrome in February 2014.

Daniel found it difficult to concentrate in class often becoming quite fidgety. He started using a weighted blanket which was given to him by one of his teaching assistants and would often put it on his head, saying that it “helped him concentrate”.

His mum Julie contacted Dr Ross Head at the CIC and explained the situation. It seemed that creating a weighted cap for Daniel was the best solution!

The team took one of Daniel’s own caps and stitched in a specially developed a rubber-like sheet material that is tough and flexible, yet dense enough for even the thinnest of layers to offer enough weight for the cap.

The cap has had a huge positive impact on Daniel’s life and he says that when he is wearing it, the hat helps him to concentrate, and he can think for longer.

Julie said: “I can’t thank Cerebra and Dr Ross Head enough, and as for Daniel, the cap looks a lot better on him than wearing a blanket on his head!”

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. 

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 fromhttp://aut.sagepub.com/content/early/2014/01/30/1362361313518994

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

http://sfari.org/sfari-community/community-blog/webinar-series/2013/webinar-ruth-ohara-on-sleep-disorders-in-autism