What in the World is Going On in Autism – July 2014 Edition

There’s an old saying that the apple doesn’t fall far from the tree, and the first study about parents of children with autism also having tendencies towards autistic traits seems to agree with this. Researchers from Washington University School of Medicine in St. Louis, the Harvard School of Public Health and the University of California, Davis published their findings in JAMA Psychiatry.

“When there was a child with autism in the family, both parents more often scored in the top 20 percent of the adult population on a survey we use to measure the presence of autistic traits,” said one of the lead researchers, John N. Constantino, MD, the Blanche F. Ittleson Professor of Psychiatry and Pediatrics.

Another revealing finding was that people with similar traits got married, that is to say, when one parent scores high for autistic traits, it’s likely the other parent will as well. Like-minded people tend to be drawn to one another

These findings also have a connection to genetics field. “To better understand how the genetic risks for autism are transmitted from parents to children—and what might protect some individuals in a family from experiencing clinical impairment even when they inherit the same risk factors—Constantino and his colleagues are conducting studies involving molecular, neuroimaging and behavioral methods to trace autism susceptibility across generations in families.” To read more, click here.

The Northland Shopping Centre in Melbourne, Australia is possibly the first shopping mall in the world to offer a quiet room for people with autism. The mall worked with the Victoria autism organization Amaze to create a sensory soothing place where children and adults on the autism spectrum can go to calm down.

The room is very plain with pastel colours, soft lighting and limited noise and smells to alleviate the ‘sensory overload’ people with autism often encounter when they go to shopping malls. The purpose of this room is to allow parents of children with autism, and also adults on the spectrum, to spend longer in the shopping centre without being forced to leave; however, this room is not a supervised child care area. An adult has to stay with a child.

The room also has extra booths for privacy. The building contractors for Northland Shopping Centre donated the materials and labour to set up the room. This should be a relatively easy thing to incorporate into a mall. Perhaps if there is a new mall being built, ask a local autism group to lobby and plan for such a room. We all have to shop for things and always having to pay for childcare is not a viable long-term option. To read more about how they organized this room in Melbourne, click here.

This is truly a beautiful program that the Lionheart School in Alpharetta, Georgia created. Every Tuesday, their older students in their vocational program go to the Dogwood Forest Retirement Community to help out. The activities that they do such a sorting the mail, setting the tables, for meals, and playing games helps prepare the students for life outside of the school system by providing them with useful skills. It also brings together two seemingly very different groups of people.

“Victoria McBride, head of therapeutic services at the school, explained, via email, that social interactions and language processing can be difficult for both students in the school and seniors at the retirement center. Because of this, the pace of conversation and social interaction between the students and the residents can be slower, which allows both parties to engage and interact with more confidence.” To learn more about this program and see the students in action on video, click here.

I read a brilliant article this month on anxiety and disruptive behavior. It talks about how children with disruptive behavior that appear defiant are often socially anxious. Anxiety can manifest itself as an overwhelming need to break out of an uncomfortable situation. This can often be interpreted as anger or opposition.

“Anxiety is one of those diagnoses that is a great masquerader,” explains Dr. Laura Prager, director of the Child Psychiatry Emergency Service at Massachusetts General Hospital. “It can look like a lot of things. Particularly with kids who may not have words to express their feelings, or because no one is listening to them, they might manifest their anxiety with behavioral dysregulation.”

Although this article does not speak specifically about autism, the information on anxiety directly relates as most people with an ASD experience anxiety. The good news is most people can be taught calming strategies to manage their anxiety.

‘”When a teacher understands the anxiety underlying the opposition, rather than making the assumption that the child is actively trying to make her miserable, it changes her approach,” says Dr. Rappaport, “The teacher is able to join forces with the child himself and the school counselor, to come up with strategies for preventing these situations.”  If it sounds labor-intensive for the teacher, it is, she notes, but so is dealing with the aftermath of the same child having a meltdown.’ The article goes on to talk about how to identify anxiety and the need for assessment. This is great read and my second most popular post this past month on Facebook.

The results of the UK National Autistic Society’s recent survey of 1300 people with autism shows just how hard life can be for adults on the spectrum. “A startling 44% of those questioned admitted they stayed indoors as much as possible for fear of being harassed. Almost a third reported having had money or possessions stolen, while 37% had been forced or manipulated into doing something they didn’t want to do by someone they thought of as a friend. Almost half (49%) of the 1,300 people surveyed reported having been abused by someone they thought of as a friend.

Although this article is unsettling to read, it does raise awareness of what adults face, particularly those transitioning from children’s services into adult services where supports are reduced or withdrawn. It tells us that even our more able people on the spectrum are still very vulnerable and need our support and protection so that they are not victimized.

Each month, I like to highlight the writing of someone with autism. I have shared Judy Endow’s blog posts in past issues, but she is so insightful and worth reading over and over again. Her post this month entitled Losing an Autism Diagnosis is brilliant. Judy talks about the malleable brain and the impact of early intervention. Through intervention, we can get autistic children to respond and behave like neurotypical children, but does this mean we have changed the autistic brain into a neurotypical one?

Judy says, “Some would look at me and say that I lost my autism diagnosis only because I have learned to inhibit most of my natural reactions and responses when in public. I seldom squeal, flap, moan or make extraneous noises. Because I want a ticket to participate in the world I have learned over many years how to act like a neuromajority person. This is a privileged position in that not all autistics are able to inhibit to the degree needed to obtain society’s tickets for participation. And, even though I can choose to fit in, I must pay the price for it every day because after decades of practice, this behaving correctly, though easier with more practice, still does not come naturally.”

Once again, we are challenged to think about the absence or minimizing of autism characteristics in a different way. If you’d like to hear Judy Endow speak, she will be appearing in Edmonton, AB on October 6th.

Are you in need of some new games and activities for the summer? Have a look at this new book Simple Low-Cost Games and Activities for Sensorimotor Learning by Lisa Kurtz. This practical sourcebook is packed full of fun, low-cost games and activities that encourage the development of motor skills, coordination and sensory tolerance in young children.

Using materials that are readily-available in most households or that can be purchased or homemade at a very low cost, these games and activities are appropriate for all children, including those with autism, ADHD, Sensory Processing Disorder, and other learning challenges. The book includes clear descriptions of how to carry out each activity, helpful illustrations, and ways to adapt activities according to the child’s individual needs. In addition, a comprehensive reference guide to the activities enables easy searching for games suited to the development of particular skills.

Do you know of an adult who thinks they may be autistic or think that about yourself? Cynthia Kim’s book I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder, Diagnosis, and Self-Discovery for Adults can help get some answers. The author was diagnosed with Asperger Syndrome in her forties. She addresses aspects of living with ASD as a late-diagnosed adult, including coping with the emotional effect of discovering oneself to be autistic and deciding with whom to share the diagnosis and how.

These are the highlights of what in the world is going on in autism for July 2014.


 

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  1. Claire says:

    Interesting blog, thank you Maureen! Re: the first part of your blog, there is definitely room for further exploration into the genetic/hereditary component of autism. As any other genetic trait, the gene needs to be present in both mom’s and dad’s side of the family to be passed onto the next generation. Although, these can be dormant genes in mom, and active genes in dad, and vice versa. Hence, one spouse can have a history of autism somewhere in the family tree but only be a carrier themselves, and the other spouse can have the autism gene as dominant, thus actually living with an ASD. You may find the research lead by James Fowler of UC San Diego and Nicholas Christakis of Harvard Medical School on social chain reaction interesting. While it does not study autism, the theory gives a possible explanation on how emotions and behavioural patterns are “contagious”. Consequently, it would be very possible for an NT spouse after years of living closely with their AS spouse to develop the AS traits by mere factor of proximity and daily exposure to certain patterns. Social chain reaction predicts that social networks (friends, coworkers, gym buddies, etc…) can influence anything from smoking, drinking, obesity, happiness, resiliency, etc…
    Another perspective, yet not medically peer reviewed, you may find of interest is the OTRS/CP Ongoing Traumatic Relationship Syndrome/Cassandra Phenomenon (OTRS/CP) which results in NT family members mirroring the AS patterns within the family. Thanks again for the wealth of information and interesting finds!

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