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

Father’s Day is on Sunday, June 16^th. Dads are not always recognized for all that they do for their children with ASD.  The Father’s Autism Network group, hosted by Autism Calgary Association, recognizes the need for fathers to have a place where they can talk about their feelings and challenges they face having a child on the spectrum. The support group meets once a month and welcomes new dads at any time.

I also discovered the UK Contact A Family’s guide for dads of disabled children. Although some of the links are UK specific, there is valuable information on dealing with employers, advice from others dads, money matters, and relationships.

Autism Speaks also has a page to celebrate fathers this month. This feature on fathers is part of the Community Connections section on their website. There is a list of books written by dads, an interview, and a topic of the week.

If you’d like to read a blog written by a dad, check out Life with an Autistic Son.  This dad provides great information on books, resources, product reviews, and lists inspirational posts he has found. He writes excellent posts about his experiences in the ASD world and personal views raising a son with autism. It’s never a rant – just informative.

Author John Elder Robison who has Asperger Syndrome, is also the father of a son with Asperger’s. He recently published a book called Raising Cubby: A Father and Son’s Adventures with Asperger’s, Trains, Tractors, and High Explosives. John was almost 40 when he realized he was living with Asperger’s, only to discover his son Cubby had the same diagnosis. He saw his son through his hobbies with model trains, his interest in fireworks and a charge of terrorism. John gave a wonderful interview on CBC Radio last month. Listen to his interview here.

Roland Askew, a 36 year old man with Asperger Syndrome, wrote a very insightful piece about bullying.  He talked about how years of bullying affected him. “All this left me with mental health problems, sleeping problems and possibly memory issues. I was afraid of the world for a long time and believed myself completely worthless. It’s taken a lot of psychotherapy to change that.”

Roland’s message – “I encourage schools and workplaces to have a low tolerance approach to bullying with strong penalties in place. I think with the number of You Tube school fight videos recently occurring and studies into cyber bullying and school bullying, that change is taking place.” To read this article in its entirety, click here.

Scientists have discovered a link between autism and epilepsy for the first time. The research, done at the University of Bath, found adults with epilepsy have higher traits of autism and Asperger syndrome. It was discovered that epileptic seizures disrupt the neurological function that affects social functioning in brains, resulting in the same traits seen in autism. These characteristics include impairment in social interaction and communication as well as restricted and repetitive interests.

SallyAnn Wakeford, a PhD student at the university’s Department of Psychology, said, “The social difficulties in epilepsy have been so far under-diagnosed and research has not uncovered any underlying theory to explain them.

This new research links social difficulties to a deficit in somatic markers in the brain, explaining these characteristics in adults with epilepsy.” This new research could lead to better services for adults with epilepsy because there is a wider range of treatments available for those with autism. The two often go hand in hand – it is estimated that 30% of people with ASD also have epilepsy.

The 2013 International Meeting for Autism Research (IMFAR) took place in San Sebastián, Spain last month. The Simons Foundation Autism Research Initiative has posted some summaries of the presentations from that conference. The summaries are written in layman’s terms in order to make them accessible to the general public. If you are interested in the latest autism research, this is a good site to read about it. IMFAR 2014 will take place on May 15 – 17 in Atlanta, Georgia.

Last month, I featured a story about Amanda Telford, the social worker who left her adult son with autism at a government agency office because she could no longer care for him. There was a follow up story in the Globe and Mail on May 9^th about how she and her son Phillipe are doing.  “Philippe is now in a temporary care home, waiting for a permanent place. His parents visit him every couple of days. They are trying to sleep without worrying. But in the middle of the night, when Amanda walks by his room and sees his empty bed, she still feels the same old heart-skip: Where’s Philippe? That’s why she tells his story to anyone who will listen. Her family, and many others, need all of us to ask the same question.”

The Organization for Autism Research (OAR) has published seven Life Journey guidebooks and The Best of The OARacle, their newsletter, to date.  You can read the descriptions, preview each online, or download copies at no cost.  They are also available in hard copy format for a donation of $5.00 US per copy. Titles include A Parent’s Guide to Research, An Educator’s Guide to Autism, An Educator’s Guide to Asperger Syndrome, A Guide for Transition to Adulthood and more.  The Organization for Autism Research (OAR) was created in December 2001 by the seven founders who are parents and grandparents of children and adults on the autism spectrum. OAR set out to use applied science to answer questions that parents, families, individuals with autism, teachers and caregivers confront daily. No other autism organization has had this singular focus.

The big news in book releases this month is Temple Grandin’s new book The Autistic Brain: Thinking Across the Spectrum.  “Autism studies have moved from the realm of psychology to neurology and genetics, and there is far more hope today than ever before thanks to groundbreaking new research into causes and treatments. Now Temple Grandin reports from the forefront of autism science, bringing her singular perspective to a thrilling journey into the heart of the autism revolution.

Weaving her own experience with remarkable new discoveries, Grandin introduces the neuroimaging advances and genetic research that link brain science to behavior, even sharing her own brain scan to show us which anomalies might explain common symptoms. We meet the scientists and self-advocates who are exploring innovative theories of what causes autism and how we can diagnose and best treat it. Grandin also highlights long-ignored sensory problems and the transformative effects we can have by treating autism symptom by symptom, rather than with an umbrella diagnosis. Most exciting, she argues that raising and educating kids on the spectrum isn’t just a matter of focusing on their weaknesses; in the science that reveals their long-overlooked strengths she shows us new ways to foster their unique contributions.

From the “aspies” in Silicon Valley to the five-year-old without language, Grandin understands the true meaning of the word “spectrum.” The Autistic Brain is essential reading from the most respected and beloved voices in the field.”

I get at least one question a month on how to help a person with autism deal with loss and grief. There is a newly published resource that is helpful in dealing with this topic. Finding Your Own Way to Grieve: A Creative Activity Workbook for Kids and Teens on the Autism Spectrum  explains death in concrete terms that the child with autism will understand, explores feelings that the child may encounter as a part of bereavement, and offers creative and expressive activities that facilitate healing.

With illustrations throughout, this interactive book begins with a simple story about what happens when people die. Each chapter then expands on the issues that have been raised in the story and offers a variety of coping skills exercises including writing, art and craft, cooking, movement, relaxation, and remembrance activities. Encouraging children with autism to express their loss through discussion, personal reflection, and creative activity, this book is ideal for children and teens to work through by themselves, or with the support of a family member or professional.

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