What in the World is Going On in Autism – March 2015 Edition

Last edition, I wrote about the results from the largest autism genome sequencing study. CBC did a podcast on February 17th with two geneticists who spoke about the interpretation of these results. One of the highlights of this research is they have now categorized 108 types of autism. Dr. Scherer, the director of the Centre for Applied Genomics, says there are well over 100 genes involved in autism, but maybe as many as 500. This new technology can be used to generate different subtypes of autism, which will lead to better diagnostics and personalized medicine for the individual.

The genome research team will be testing 10,000 families in the next 18 months to widen the scope of this study which may identify more subtypes of autism. Increased understanding will hopefully lead to earlier diagnosis and the development of appropriate, individualized interventions.

A troubling incident occurred at a school in Ottawa, ON recently. Daniel, a 9 year-old boy with autism, was restrained at the school by police with handcuffs. He became agitated by another child with autism on the van ride to school. He was taken off the van once at school, then escorted by an educational assistant to a room used to help children calm down. “A number of people were in the office at the time, including the principal, a school therapist and some educational assistants, trying to calm him, the father said.”

The very fact that so many people were involved in calming Daniel down, shows a lack of understanding of autism neurology and how to support those who are in highly aroused states. Restraint, with handcuffs, should not have been necessary if low arousal approaches had been used.

When people with ASD experience traumatizing or difficult events, these moments in life are often revisited in the future as if they’ve just happened. Daniel’s father, Daniel Ten Oever, said, “I’ve asked him now about what happened and he tells me he’s now scared of police. He’s been making paper handcuffs (at home) and now he’s trying them on us.” To read more about his incident, click here.

We’ve known for some time that interaction with dogs can have a positive effect on those with autism and other disabilities. Horses are now being recognized for their psychological benefits by a growing numbers of therapists who work with autistic children.

“The horse is the perfect mirror, they are very emotional beings; we’re only starting to realize how intelligent they are,” said therapy counsellor Gabrielle Gardner, of Shine For Life.

Although there is little research around equine therapy, American horse trainer Franklin Levinson says, “It has been clinically documented that just being around horses changes human brainwave patterns. We calm down and become more centred and focused when we are with horses. Horses are naturally empathetic. The members of the herd feel what is going on for the other members of the herd.”

I have seen the positive effects on my own son with autism when he interacts with horses. In the words of Winston Churchill, “There’s something about the outside of a horse that is good for the inside of a man.” To read more about equine therapy and its uses, click here.

It is a misconception that people with ASD do not experience the full range of emotions. They have more trouble expressing emotions in ways that society deems normal. Those with Asperger Syndrome (AS) are more susceptible to depression.

Clinicians have a greater challenge in diagnosing depression in this population because they may not display the same signs and symptoms. Jeannie Davide-Rivera, adult with autism, says, “When faced with depression, it brings about feelings of wanting to be held, comforted and nurtured. This is in direct contradiction to the self-sufficient independence they’ve developed for themselves. This tends to lead to the feeling of loss of part of themself, as they feel they lose part of the independence they worked so hard to create. The confusion of this paradox also breeds feelings of frustration, loss and depression.”

Depression can cause a loss of interest in things that a person with AS was passionate about, they can have problems envisioning a future that is not bleak and hopeless which causes them to spiral more downward, and there can be increased sensitivities. To learn more about how depression manifests itself in those with Asperger Syndrome, read Jeannie Davide-Rivera’s insightful article.

Do you know what the difference is between an autistic meltdown or temper tantrum? Judy Endow explains the difference brilliantly in her blog post. “Tantrums in young children typically occur when the youngster cannot have something he wants or cannot do something he wishes to do. A tantrum is goal driven behavior designed to persuade the adult in charge to give in to the desires of the youngster.
Autistic meltdowns typically occur as a response to being overwhelmed. Sensory overload is one way being overwhelmed occurs, but becoming overwhelmed can happen in many other sorts of situations. Because the processing of the autistic brain often is not in sync with real time, anything from too many choices to not being able to pull up solutions to an in-the-now problem to an intense emotion that is stuck rather than dissipating over time can be triggers for a meltdown.”

It’s important to understand the difference between the two. A tantrum is willful behavior in younger children and therefore can be shaped by rewarding desired behaviors whereas a meltdown can occur across the lifespan and isn’t impacted by a rewards system.

Most parents don’t like to think about what adult life will look like for their child with autism. It’s too daunting and overwhelming, but long-term planning is essential for the best possible outcome. Once a child leaves school, you have to find other programs and supports in the community to ensure a meaningful day and that takes time. Waiting lists can long or few spaces available in good programs.

Author, autism advocate and parent Chantal Sicile-Kira wrote an excellent blog post about planning for the future. Her book, A Full Life with Autism, is a guide for helping our children lead meaningful and independent lives as they reach adulthood. Sicile-Kira says, “If there is anything you’ve learned as a parent of a child with autism, it’s that you can’t just leave it up to the system to figure it out. You have to be involved.” Even if your child is eligible for services, that doesn’t mean he/she will get the services. You will have to explore options and get on waiting lists as early as possible.

We most often hear the voices of moms of special needs children, but rarely the dad’s viewpoint. Stuart Duncan wrote a wonderful article on what it feels like to be a special needs dad. Dads usually have to work harder and longer hours or multiple jobs because mom often becomes the stay at home caregiver. Stuart says, “So as a dad, you now find yourself working multiple jobs or longer hours or even having to find a whole new line of work to make the income as close to the expenses as possible. Guess what you do when you get home? Play with your child? Rub your wife’s sore feet? No, most likely you go right to sleep and wake up to do it all again tomorrow.”

Stuart reacts to the negative portrayal dads often face online and in the media. “Just because the articles aren’t there, it doesn’t mean we’re not. Just because you aren’t hearing about all of our struggles, it doesn’t mean we’re not struggling. Just because you don’t read all about our emotions, it doesn’t mean that we don’t have any.”

Several editions ago, I introduced readers to the Tom series for boys. Now there is a series for girls under the name of Ellie. What’s Happening to Ellie is simple picture book that follows Ellie as she begins puberty. Designed to be read with girls with autism or other special needs, it provides the perfect starting point for parents and carers to discuss changes including new hair growth and menstruation.

Things Ellie Likes – A book about sexuality and masturbation for girls and young women with autism and related conditions is an accessible and positive resource to help parents and carers teach girls and young women with autism or related conditions about masturbation. It covers when and where it is appropriate and helps to establish boundaries surrounding privacy more generally. With simple but explicit illustrations, this book provides the perfect platform to talk about sexuality with girls and young women with autism or related conditions.

These are the highlights of what in the world is going on in autism for March 2015.

 

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