February 2015
By Maureen Ben
nie
Member,
Autism Calgary Community
Director,
Autism Awareness Centre Inc.
Many individuals with autism enjoy using tech devices such as tablets and the iPhone, but a new study shows that their use at night can cause sleep disturbances due to reduced levels of melatonin. Melatonin is a hormone that typically increases in the evening and helps induce sleepiness.
“During a two-week inpatient experiment involving a dozen adults, some participants were asked to read on an iPad for four hours each night before bedtime, for five consecutive nights. Others read printed books in dim light. After a week, the groups switched.” The results – participants using iPads had reduced levels of melatonin, took longer to fall asleep, and spent less time in restorative rapid-eye movement sleep.
As electronic devices become more prevalent, we could see a rise in long-term health issues due to a significant loss of sleep. For example, a persistent lack of sleep has been associated with obesity and diabetes.
While this study did not involve people with ASD, it is a cautionary tale as this population often experiences sleep difficulties. It is important to have a regular routine around bedtime that involves bathing at least one hour before bed, low arousal activities, a dark room to sleep in, and limiting the use of tech devices before bed.
The results of the largest autism study using whole genome sequencing discovered no two persons with autism are the same even if they are siblings with the same diagnosis. There is a large genetic diversity in autism.
Dr. Stephen Scherer from Toronto’s Hospital for Sick Children said, “We already knew that there are many differences between autism cases, but our recent findings firmly nail that down. It shows that a full assessment of each individual’s genome is needed to determine how to best use knowledge of their own genetic makeup for autism treatment.” To read more, click here.
On the flip side of research, John Elder Robison, adult with Asperger Syndrome, wrote an opinion piece about autism research and how it has failed those on the spectrum. John says, “Research into the genetic and biological foundations of autism is surely worthwhile, but it’s a long-term game (see “Solving the Autism Puzzle”). The time from discovery to deployment of an approved therapy is measured in decades, while the autism community needs help right away.” John went on to say we if we accept that autistic people are neurologically different rather than sick, then the research goal can be about helping people with autism achieve their best quality of life.
Pediatricians may miss signs of autism because check-ups are too brief. A typical 10 – 20 minute pediatric exam is not enough time to see potential signs of autism. During a doctor’s visit, many children with autism display mostly typical behavior and may fail to receive a referral for further autism testing, even if a few autism symptoms are noticed.
A “study in Pediatrics looked at children 15-33 months old, with autism experts analyzing 10-minute videos of the children’s behaviors during evaluation in a clinical setting. Children with autism, speech delays and typical children were included. The researchers wanted to document the ratio of typical behaviors vs. atypical behaviors exhibited and the corresponding referral decisions based on the observations. They found that within the brief timeframe of 10 minutes, children with autism exhibited much more typical behavior than atypical behavior overall, making it easy for clinicians to miss detecting autism risk. In the study, even the experts who reviewed the videos missed referrals for 39 percent of the children with autism, based on the brief observation alone.”
With early intervention being the key to more successful outcomes in autism, it’s important to develop a comprehensive screening process. Parents and care providers need to work together to pinpoint early signs and symptoms of autism. Parents see their own child the most but also need to be educated about potential warning signs. To read the entire article, click here.
The Globe and Mail published a fascinating article on inflammation, the brain, and autoimmune disorders. Kelly O’Donnell, a mom of a 7 year old daughter, watched her descend into what appeared to be Tourette Syndrome. Doctors suspected O’Donnell’s daughter was suffering a little-known condition brought on by a streptococcal infection and did a test. It was believed she had Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, or PANDAS. Antibiotics brought her back to normal.
Scientists have been accumulating evidence “to suggest that infection, autoimmune diseases and environmental factors such as stress or diet can trigger the immune system to go awry, causing it to damage the brain instead of attacking foreign pathogens. The result: an array of psychiatric conditions, including schizophrenia, autism spectrum disorder, Alzheimer’s disease, depression and anorexia nervosa.”
This evidence does not say immune responses are at the root of all psychiatric cases, but that common mental illnesses have multiple causes. “Anything that your immune system sees as an invader, whether it’s gluten or a bee sting or whatever, or a virus or a bacteria, you now have to be careful and watching for almost a mental health symptom,” O’Donnell says.
This new theory could have a positive impact for those with ASD, many of whom present with co-morbid conditions ranging from mental health issues to GI tract disturbances.
While not everyone is a fan of Facebook, it has had a positive impact for parents of special needs children. It has become a global way to share new discoveries and find support with other parents who are experiencing the same difficulties. For those suffering from rare disorders, Facebook has become a meeting place for these families that otherwise would never have known about others in the same boat.
Huffington Post Parents posted an excellent opinion piece by a mom who was able to find a community through Facebook. There are some great Facebook pages out there to join that are truly helpful. It has been a great tool for formerly isolated parents.
Nonverbal individuals with autism are giving us valuable insight on how they experience the world. UK resident Sophie Webster wrote a post about sensory overload. “When I get sensory overload it’s like I have 100 buzzing bees in my head, and my head hurts a lot and feels like it will go bang! like a balloon. It’s the most uncomfortable thing ever. I bang my head on things to try and relieve the pressure in my head, to try and stop the feeling. While I’m experiencing sensory overload, I find it hard to talk or make any sentences.”
Sophie received her first communication app in 2011 and she’s never looked back. She can now share her experiences with the wider world, giving us an opportunity to better understand what she is going through. Better communication can lead to effective and appropriate support.
Need to work on fine motor skills? Have a look at this article that provides 8 fun ways to strengthen fine motor skills. All of the activities use simple, inexpensive items that are readily available.
Judy Endow is a prolific writer about autism topics. She is a 60 year old woman on the spectrum and a great friend of mine. She was recently told by a parent that she was “not significantly enough affected by autism to be able to understand real autism” and therefore should stop speaking out about autism. You can’t look at a person and judge them by how they express themselves, which Judy does very well. She has had a long list of struggles related to being autistic. In Judy’s words, “Autism is a spectrum. There is no experience of autism that is more real than another experience of autism. All autism is real.” To read this excellent blog post, click here.
Thinking about starting a gluten-free/casein free diet and want to learn more about it? Autism: Exploring the Benefits of a Gluten- and Casein-Free Diet offers parents, teachers, and other education or health professionals an easy-to-read alternative to sifting through the combined science. Written by leading experts in autism research, food, nutrition and dietetics, the book cuts through the jargon to offer readers a no-nonsense, accessible and authoritative overview of how diet might affect some characteristics of autism, and provides a range of useful recipes and handy hints for making mealtimes fun for children with autism and related conditions who are embarking on such a dietary change.
Emotions are complex and not always easy to understand. Children need help finding the words to describe how they’re feeling. F Is for Feelings, a friendly and positive alphabet book, gives children those “feelings words,” and explores the idea that while some feelings are more comfortable than others, all are natural and important. F Is for Feelings invites children to share, express, and embrace their emotions—every day! A section in the back provides tips and activities for parents and caregivers to reinforce the themes and lessons of the book.
These are the highlights of what in the world is going on in autism for February 2015.