May 2013 By Maureen Bennie Member, Autism Calgary Community Director, Autism Awareness Centre Inc.

A story that’s grabbing headlines this month is the Telford’s struggles with their adult son who has severe autism. Amanda Telford left her son at the Ottawa offices of Developmental Services Ontario, the Ontario government agency that connects adults with disabilities to services in the community because she said she can no longer care for him. Phillipe has complex needs and requires 24 hour supervision. The long waiting list for residential placements leaves families like the Telfords trying to manage on their own at home.

Amanda Telford, social worker, said she and her husband thought long and hard about their decision that they can no longer care for their son and keep him safe. The Telfords have shone a light on the lack of resources for adults with disabilities in Canada. What can we do? Join an organization like the Alberta Council for Disability Services (ACDS) that forms a collective voice to elicit change in the province of Alberta. ACDS is a not-for-profit association that exists to serve community-based service provider members who support people with developmental disabilities or brain injury. The goal is to ensure quality service delivery for individuals within Community Disability Services (CDS). For more information, visit their website.

A new study published in the journal Current Biology found that children with autism do not copy unnecessary or silly actions when learning a task. The study involved 31 children with an autism spectrum disorder, and 30 typically developing kids. All the children were asked to watch as an adult showed how to remove a rubber duck from a closed Tupperware container. Some of the steps performed were necessary, such as unclipping the lid of the box and taking the lid off, while some were unnecessary, such as tapping the lid twice. The children were then given the container, and asked to get the rubber duck out as fast as they could.

The children without autism were more likely to copy all of the actions compared to the ones with autism. “The data suggest that children with autism do things efficiently rather than socially, whereas typical children do things socially rather than efficiently,” study researcher Antonia Hamilton of the University of Nottingham in England, said in a statement. “Autistic children only do the actions they really need to do.” To read this article in its entirety, click here.

Scientists have found patterns of change in gene activity involved in autism in a study that shed light on how environmental factors can work to turn certain genes on or off and contribute to the development of autism. In this study involving 50 sets of twins, researchers tried to figure out what might have caused some of them to develop autism while their genetically identical siblings did not.

Researcher Chloe Wong from Kings College London said that epigenetic changes affected levels or activity of genes without changing the underlying DNA sequence. Scientists think they are one way in which the environment interacts with the genome. Epigenetic changes are also potentially reversible, so finding out more about them may point researchers towards the development of new medicines or treatments.

Previous studies have indicated a strong genetic component in autism. Jonathan Mills, lead researcher from University of Exeter, said the next step is to conduct larger studies to see whether researchers can identify key epigenetic changes that are common to the majority of people with autism and use them to help develop ways of preventing or treating the disorder. To read more about this study, click here.

Suicide and autism is not a topic that is often discussed or even researched. Aspie writer Lynne Soraya has written an excellent piece on this subject. It was my most read Facebook post this past month so it obviously struck a chord with people. There was a new study done at Penn State University on autism and suicide. The researchers found that the percentage of children with autism, rated by their parents as sometimes to very often contemplating or attempting suicide, was 28 times greater than that of typical children, but three times less than that of depressed non-autistic children. The four demographic variables such as socioeconomic status and racial differences were significant risk factors.

A history of bullying also was a factor in contemplating suicide. The findings of the study indicated suicide had less to do with the neurological differences of having autism and more to do with social factors.

If you know someone who has thoughts of suicide, seek help for them right away. My sister-in-law, Dawn, committed suicide in March. She had tuberous sclerosis and intellectual difficulties. She was living independently without supports; she was overwhelmed and fell prey to an exploitive group of people via the internet. As a family, we made mistakes but did the best could because we were not her legal guardian. Families are never the same after something like this happens. We need to make sure counselling support is in place as well as social and community inclusion opportunities. Every person needs to feel that they belong.

Non-verbal people can be difficult to communicate with. Even though they can’t speak, they still have something to say. Emma Sterland, website manager of www.netbuddy.org.uk which is a practical tip-swapping site and online community for parents, carers and special needs professionals, collected 23 tips for communicating with a non-verbal person. Some tips include using a camera as means of communication, puppets, flash cards, and communication passports. Lots of great links are provided throughout these tips.

And speaking of communication, check out this website on how to make communication passports. Personal Communication Passports are a practical and person-centred way of supporting children, young people and adults who cannot easily speak for themselves. They pull complex information together and present it in an easy-to-follow format. The advantage of Passports is that they are easy to read, informative, useful and fun. They are highly personal, so guidelines to good practice are outlined on the website to protect the children and vulnerable people who use Passports.

Passports can be used in home, care, social work, health and education settings. They are of key importance in the community to link up input from all of those different settings. Passports are useful for a very wide range of people. It doesn’t deal with age or medical diagnosis; it’s primarily to do with communication difficulties, and life circumstances. What an excellent and innovative idea!

Michelle Garcia Winner and her team and Think Social Publishing have done it again with their new Social Thinking Curriculum aimed at ages 4 – 7. The Incredible Flexible You  is a series which will eventually consist of 10 storybooks plus related curriculum, released in two volumes (5 storybooks + curriculum in each volume). Volume 1 is currently available. Detailed instructional lesson plans, complete with Teaching Moment specifics, motivating in-classroom structured activities, educational plan goals, and learn-at-home family letters give educators and parents the knowledge and tools they need to help young children use their social thinking abilities and develop better social skills.

The series is accompanied by The Incredible Flexible You music CD. Multiple GRAMMY®-award winning artist Tom Chapin, long known for empowering children through his music, co-wrote and performs 12 engaging songs that reinforce the Social Thinking series’ concepts. His spirited, sing-along approach appeals to young children, gets them up and moving, and enhances their ability to actively participate with others and synthesize Social Thinking Vocabulary into everyday life.

Dr. Robert Naseef has written a new book to help families on their autism journey. Autism in the Family: Caring and Coping Together  provides parents with information on how to best support for their child with autism—and ensure that the whole family’s needs are met. Dr. Robert Naseef has both personal and professional expertise to share with overwhelmed families. Parents will benefit from the chapters on navigating their child’s adolescence and adulthood, information on autism, and rare in-depth coverage of the needs, emotions, and parenting experiences of fathers. A warm, down-to-earth, and practical guide for parents—and an enlightening read for the professionals who work with them—this book will be a valuable companion as families love and support their child with autism.

These are the highlights of what in the world is going on in autism for May 2013.