January 2014 By Maureen Bennie Member, Autism Calgary Community Director, Autism Awareness Centre Inc.

As we begin the year 2014, it seems appropriate to reflect back on this past year to see what we’ve accomplished. By looking back and reflecting on process and results, we can set new goals and aspirations for 2014. Let’s begin by looking at the year in review at the Simons Foundation Autism Research Initiative (SFARI). They give an overview of the notable papers, hot topics in autism, top tools and techniques, photos of people of the spectrum, most viewed articles, quotes of the year from SFARI articles, and some musings from researchers.

If you’re interested in research, Autism Speaks listed their Top 10 Advances in Autism Research for 2013. There were strong reactions posted in the comments section which was interesting to read. Parents continue to have conflicted feelings about the type of research being done and what would most benefit the autism community in terms of funding.

The Friendship Circle, a blog I pull posts from throughout the year, listed their Top 10 Apps for Special Needs for 2013. This blog also has an excellent app review section. They reviewed 300 apps this past year alone! They also offer readers the chance to submit their own app reviews, so if you are technically inclined you can share your discoveries with a wider audience.

 

A new screening tool was created to facilitate the diagnosis of Autism Spectrum Disorder in adults by researchers at the Karolinska Institutet in Sweden. Adults with autism are often neglected group by researchers, yet adult diagnosis is needed.

“Research specialists at the Department of Clinical Neuroscience have, under the leadership of Dr Susanne Bejerot, refined and simplified an existing American test, RAADS-R (Ritvo Autism and Asperger Diagnostic Scale-Revised). The new test is a questionnaire with 14 self-screening questions. It is therefore known as RAADS-14 Screen. The scale includes three sub-scales that measure mentalization difficulties, social anxiety and sensory oversensitivity – all common symptoms in autism. The answers are categorized on the basis of whether the symptoms appeared in childhood or developed later in life.” To read more about this new diagnostic test, click here.

While we’ve known about probiotics for some time now, their benefit to the autism community is beginning to become more widely known. With so many people on the spectrum suffering from GI tract issues and using the co-occurrence of brain/gut connection problems in autism, researchers at the California Institute Technology (Caltech) are investigating a potentially transformative new therapy for autism and other neurodevelopmental disorders.
‘In the new Cell study, Mazmanian, Patterson, and their colleagues found that the “autistic” offspring of immune-activated pregnant mice also exhibited GI abnormalities. In particular, the GI tracts of autistic-like mice were “leaky,” which means that they allow material to pass through the intestinal wall and into the bloodstream. This characteristic, known as intestinal permeability, has been reported in some autistic individuals. “To our knowledge, this is the first report of an animal model for autism with comorbid GI dysfunction,” says Elaine Hsiao, a senior research fellow at Caltech and the first author on the study.’

The researchers treated the GI symptoms of mice with Bacteroides fragilis, a bacterium that has been used as an experimental probiotic therapy in animal models of GI disorders. This resulted in the leaky gut being corrected. To read more about this probiotic treatment, click here.

I have written a few times this past year about women on the autism spectrum being underdiagnosed. Because autism is still seen as primarily affecting males and diagnostic tools are developed based on the observation of males, women continue to fly under the radar. In the Globe and Mail’s article Autism’s forgotten female population, Jackie McMillan’s story of her diagnosis at age 41 is discussed. “When her teeth came in, she chewed constantly, eating her dolls, baby blanket and the vinyl piping off kitchen chairs and car seats. She had allergies to dairy, was hyper-active and rocked constantly. She had rigid routines and routine meltdowns.

A well-meaning family doctor prescribed aspirin and cortisone steroid creams. Her frustrated but loving parents threw her into challenging situations to help her develop coping skills. But living in the mainstream was always terrifying for her.” Sound familiar?

We are now starting to suspect that the number of females on the spectrum is closer to that of males. Women exhibit different symptoms such as such as heightened anxiety caused by sound, light, smell and touch. Women try to suppress anxiety because they are often expected to perform in social situations, and tend to internalize their behaviour.

Kevin Stoddart of the Redpath says ‘the healthcare community needs to get sharper at identifying females – especially those with milder autism spectrum disorders – so they can get professional help at a young age.’

Speaking of women, Cynthia Kim, a 42 year old woman with Asperger Syndrome, has an excellent blog called Musings of an Aspie. Her recent post on autistic regression and fluid adaptation is brilliant. Cynthia is both a wife and mother and writes very candidly about her experiences. Her viewpoint is quite enlightening!

Fear is a very real emotion for children with autism, yet it is often not recognized, expected, or acknowledged. This is because fear in autism is exhibited in unexpected ways, it happens in situations where one does not expect someone to be afraid, and they are afraid of things that don’t seem scary to most people.

Bec Oakley, psychologist, has written a great blog post explaining fear in people with autism, why it happens, the repercussions of not understanding fear, and several tips on how to support someone who is afraid. She says, “A kid who is afraid believes that they are in danger – without sharing your knowledge that they’re safe, it’s easy for them to assume that not only are you failing to protect them but you’re actively putting them in harm’s way… so now they need to defend themselves against both you and the threat.”

By ignoring fear, we break down the trust in a relationship which is hard to get back once lost. People with autism need to know that their “caregivers are a reliable and consistent source of protection from the threats around them, whether real or only perceived.”

Who doesn’t love freebies? Speech pathologist Amy Reinstein has created various types of communication boards for adults and children available for free download. These boards can be helpful for adults during a hospital stay when they can’t communicate. With these boards, they will be able to communicate their wants and needs to their nurses and doctors while in the hospital.
For children, you can use them as part of a communication system, for scheduling purposes, for social stories, and to support literature. They can also be helpful when you are learning a new language.

Amy has graciously offered if after looking through the pre-made AAC boards on her page and you can’t find what you are looking for, you can contact her at to discuss what you are specifically looking for.

When parenting, teaching and working with children who have social, emotional, and/or sensory sensitivities, we often put the emphasis on learning new skills. Countless hours are spent working on social skills, fine- and gross-motor skills, language skills, and academic skills, but stress management skills are often left unaddressed. This is unfortunate, as stress can create a multitude of challenges for learning and daily living. In other words, it can create barriers to the very things we are trying to teach. Besides, it can cause distress, which can lead to meltdowns and behavioral outbursts. In short, it is crucial that children learn and develop skills to help them to manage their stress as independently as possible.

The new book Totally Chill: My Complete Guide to Staying Cool is a stress management workbook that is meant to be read, completed, and used as much as possible by children themselves. Its fun graphics and interactive style make it ideal for children grades 3 through middle school. Everyone feels stress – adults and children alike. It’s part of life. But life can be a lot easier when we learn new skills and ideas to help us handle the stress in our lives.

Sexual health and sexuality can be difficult subjects for parents and caregivers to broach with autistic children, made more challenging when children are at the severe end of the autism spectrum. Some parents may even question the validity of teaching sexuality to those who are severely autistic.

Sexuality and Severe Autism: A Practical Guide for Parents, Caregivers and Health Educators guides you through the process of teaching about sex and sexuality, answering all of the most crucial questions, including: Why is it necessary to teach this subject to my severely autistic child? When is the right time to start talking about these issues? How detailed and explicit should I be? What methods are most appropriate? It addresses male and female issues separately and covers public and private sexual behaviours, sexual abuse, cross-gender teaching and liaising with school, in addition to the more obvious areas such as physical changes and menstruation.

These are the highlights of what in the world is going on in autism for January 2014. Happy New Year!