What in the World is Going On (April 2012)

April 2012

By Maureen Bennie

Member,

Autism Calgary Community

Director,

Autism Awareness Centre Inc.

The 5th annual Autism Awareness Day, declared by the United Nations, is on Monday, April 2nd. This UN resolution is one of only 3 official health-specific United Nation days. The idea is to bring world attention to autism and encourage Member States to take measures to raise awareness about autism throughout society, and to encourage early diagnosis and early intervention. By bringing together autism organizations all around the world, a voice will be given to the millions of individuals worldwide who are undiagnosed, misunderstood and looking for help.

Autism Speaks will mark this day with their Light It Up Blue campaign. Now in its third year, iconic landmarks around the world will Light It Up Blue to show their support and raise awareness about autism. Anyone can participate in this campaign. To find out about ideas you can do to Light It Up Blue, click on the link here.

An international consortium of scientists is collaborating on one of the largest ever academic-industry research projects to find new methods for the development of drugs for autism spectrum disorder (ASD). European Autism Interventions – A Multicentre Study for Developing New Medications (EU-AIMS) is the largest single grant for autism research in the world and the largest for the study of any mental health disorder in Europe.

Robert Ring, Vice President of Translational Research for Autism Speaks said: “The lack of effective pharmacological treatments for ASD has a profound effect on patients’ lives. We are excited that with this unique collaboration we may see a real shift in future treatment for this devastating disorder.”

EU-AIMS will focus on three areas: the development and validation of translational research approaches for the advancement of novel therapies for ASD; the identification, alignment, and development of expert clinical sites across Europe to run clinical trials; and the creation of an interactive platform for ASD professionals and patients.

Psychiatrist David Goldbloom is the new chair of the Mental Health Commission of Canada (MHCC) was recently appointed. The MHCC is about to unveil its mental health strategy. Canada is the only G-8 country without a strategy. The strategy is a way of articulating priorities and focusing efforts but does not fund mental-health programs. Many individuals on the autism spectrum also experience mental health problems such as anxiety and depression. Hopefully, the development of this national strategy will lead to one for autism in the near future.

I recently discovered The Riot which promotes self-advocacy for people with disabilities. Self-advocates speak up with spoken words, sign language, letter boards or in ways unique to each person. The Riot offers a newsletter, a blog where self-advocates can share opinions, an online art gallery, toolkits, games and services to help individuals become stronger self-advocates. They cover topics that are important to self-advocates. Although they are serious about self-advocacy issues, they also want to make self-advocates laugh and feel good about life. Check out this great site.

A new report from the Center for Autism Research at The Children’s Hospital of Philadelphia found that US families with autistic children earn nearly $18,000 less than parents of normally developing kids. Accounting for factors such as parents’ age, race, education and health, fathers of kids with autism were just as likely to be employed as fathers of typically developing children. The same was true for how much fathers worked and earned.

The same did not hold true for mothers. Compared with mothers of kids without disabilities, those who had autistic children were six percent less likely to be employed, worked seven hours less per week and had less than half the annual income. Mothers tend to be the primary caregivers for children on the spectrum, advocates, and often are case managers for services.

“State legislatures, employers and the federal government have to engage these families in a conversation about how to best assist them,” said David Mandell who spearheaded the study. “Any assistance must preserve work flexibility and the wide variety of work and care arrangements which are key to achieve a work-family balance that works for kids with autism, their siblings and their parents.”

Although this was a US study, I believe the results would more than likely be similar in Canada.

The Ages and Stages Questionnaire (ASQ-3) for children from birth to age 5 is available on-line for free through the Easter Seals. The ASQ-3 results will help parents see if a child’s developmental progress is on time and alert parents to concerns that can be discussed with a health care provider. The ASQ-3 is designed as a screening tool and not for diagnosis. Results from the on-line ASQ-3 will be e-mailed within two weeks.

Not sure how to teach the hidden curriculum of social situations to adults on the spectrum? Judy Endow, adult with ASD, has written a new book based on her personal experiences. Learning the Hidden Curriculum: The Odyssey of One Autistic Adult provides lots of hidden curriculum items that pertain to most areas of adult life. In relating how Judy personally has learned to more successfully manoeuver social interactions, she also presents a framework for developing the ability to quickly assess a situation and take steps to avoid making social blunders before they have been committed. This book is all the more valuable because it was written by an autistic person who has learned by trial and error.

The new book Everyday Activities to Help Your Young Child with Autism Live Life to the Full is brimming with simple ideas, activities and exercises to address the daily challenges that young children with autism face such as getting dressed and tooth-brushing. Easy to carry out and to fit into routines, the activities will help improve a child’s sense of body awareness, coordination and motor skills, and address key tasks such as eating meals and healthy sleep. There are also ideas for tackling social challenges, including playing with friends, going on a holiday and staying calm at school. This jargon-free book shows how occupational therapy techniques can be used to help a young child with autism to live life to the full, and will be an essential tool for parents and carers.

I discovered a great website this month called Autism and Empathy. The purpose of the site is to to undo the myths about autism and empathy that have stigmatized autistic people for so long. It features writing by autistic individuals, autism parents and family members, autism professionals, and others who understand that autistic people, all along the spectrum, can experience the world in highly empathetic and sensitive ways. By telling their stories, describing their experiences, and speaking the truth in their own voices, they can break dehumanizing stereotypes and increase understanding. The posts are insightful and well written.

These are the highlights of what in the world is going on in autism for April 2012.