On a beautiful summer day in Chicago last year, my family and I were enjoying the view on a water taxi. As we were reaching the Navy Pier, a man who has been sitting close to us struck up a conversation about getting on a train. It went something like this:
Man: “I am going on a train to Washington D.C.”
Me: “Oh that sounds exciting, are you going to visit your family?”
Man: “The train is going to leave at 2.45 pm from North State St. and arrive in Washington Union Station at precisely 6.30 pm tomorrow” (then he shared a variety of Amtrak schedules leaving from Chicago).
Me: “Ah so many options!”
Man: “Performance metric is color-coded to each train…..” (Then he went on and on talking about train maintenance system in the U.S.)
Me: (I started to understand what was going on, and I waited patiently for a pause). “So which city is your favorite to visit on a train?”
Man: (No answer and he walked away).
The above conversation illustrates the type of conversations we frequently encounter with ASD individuals. It is informative to the very least, but after so many exposures to the same topics and lack of flexibility on their part to take in and integrate others’ perspectives, it can be exhausting to engage in conversations with them.
Studies such as Deloache, Simcock and Macari’s (2007) have reported extremely intense interests in planes, trains and automobiles in Neurotypical young children. However, individuals with ASD have the most difficulties in turning a high personal interest theme into a productive leisure activity with others. For them a high interest theme frequently turns into an obsession and isolation. Steven, a 15 year old boy with ASD has always loved drawing elephants since he was a little boy rarely drew other objects. Although he produces beautiful art work, without any flexibility to incorporate people’s feedback, it would be difficult for him to work as an artist in the future.
What can we do as parents and professionals to help turn an ‘obsession’ into ‘passion’ and to turn a ‘meaningless’ interest into ‘meaningful’ engagements that can be shared with others? How can we help a talented person to take in other people’s perspectives, so that his/her unique interest and ability can be a potential future career?
To expand on very deeply-rooted solitary habits in individuals with ASD, adult guides need to consistently plan carefully, choose a good time to initiate and to slow down the activities. Breaking any bad habit needs determination and commitment, and since the child is more likely to be unmotivated to make any changes, the guides are the ones responsible for introducing novelty and to stick with it!
One idea that has worked well with the families we work with is to have a ‘family’ meeting and create a family schedule for new family activities. For example, Sofia, a 6 year-old girl with Asperger agreed that Thursday nights and Sunday mornings would be ‘Wacky Time’ for her and her parents. For Sofia this means that she and her parents would learn something new together. Sofia has had an extreme fixation on dolls since she was 18 months old; carrying a doll everywhere, thinking and talking about her favorite dolls most of the time, playing only with dolls, not wanting to play with other children unless they want to incorporate doll themes, and not letting anyone touch her dolls. The family made a weekly list of things they could explore together, such as; trying new foods, learning about reptiles, incorporating stuff animals into doll play, creating collaborative art projects with doll themes, or trying a new game not related to dolls. This weekly list was revised with everyone’s input, and the list was on their fridge so Sofia could refer to it and stay with what was agreed upon or continue where they left off last time.
What this ‘visual schedule’ has done for Sofia was to reduce her anxiety when experiencing novelties, and she got to see that it was not just about what she or her parents wanted, instead it was about what the two participants wanted to explore. After about two months of practicing ‘newness’ in a variety of activities, Sofia’s anxiety was significantly reduced. The family schedule gradually expanded to include possible activity selections for playdates. Sofia also gradually began to pay attention to a variety of conversation topics, and participated when others initiated conversations.
We can see above that Sofia’s parents incorporated the doll theme within their initial schedule, to lessen Sofia’s anxiety. However, they were very clear and specific in their expectations of ‘collaboration’ in all of the proposed activities. Sofia’s parents discussed and role-played the concept of ‘give and take’ using a variety of objects; sometimes they involved dolls, most of the times not. They clearly defined behaviors, such as dominating conversations with one singular topic, grabbing items during play, or arguing as unacceptable. Sofia eventually understood the idea of ‘me and you’ during interactions. Once Sofia was willing to participate in novel themes, she did not have to latch on to her dolls as her security blanket in uncertain situations.
At the beginning of the process of creating new experiences, it is helpful for the child to know that his/her preoccupation with certain objects or themes is not something negative, but taking in variations from others can create mutual enjoyment.
Ways to practice ‘give and take’:
Turn taking when adding new elements-Set up the expectation that each person will add something new into the activity. Another consideration is to incorporate gestures in deliberate and amplified ways instead of saying “my turn” and “your turn” verbally, which seems to increase anxiety by putting the child on the spot to shift his/her perspective on demand. The benefit of using multi-channel communication is to make the guide’s intention clear in a non-threatening manner, and this helps to shift the child’s perception from being instructed to being invited.
Alternating interests between guide and child-It is important for individuals with ASD to understand that other people have their own preferences, thoughts, and feelings. In Sofia’s case, she practiced listening to her mom’s favorite subjects and they would go back and forth sharing a variety of thoughts and ideas.
Eventually, they generalized this turn-taking format when talking on the phone, looking at funny pictures, writing notes to each other and making storybooks together.
When a toy, device or theme has become an obsession, it may not matter how slow and diligent the guides are, establishing collaboration can still be extremely difficult. Screen addiction, particularly in teens, is a common obstacle to having a productive engagement. Thus many parents with ASD children must deal with this obstacle first before moving on to other objectives.
In our family, we define the term “addiction” as difficulties transitioning into other activities, overly thinking about a specific activity, talking and gravitating towards that one specific toy or activity. Our kids know that if they frequently ask to play with a screen device, then we would impose a NO SCREEN time over a certain period of time, and they have to earn back their screen time. Although the older age group might not be as easy as the younger kids to control, utilizing a family calendar, agreeing on replacement activities and simply taking an extended break from the obsession would help. What is critical is how parents fill the “no-screen” time with productive opportunities, even when they are in short increments with the child complaining all the way! Eventually these new activities will be part of the new daily routines.
When parents are ready to tackle their child’s obsession, starting slowly with short opportunities one day a week would be wise. Gradually expand those new activities by adding new elements, making sure that decision making involves the child instead of parents making decisions for their child.
Not rushing through activities is also very important, since anxiety could easily take over and resistance would build up quickly, parent and child both need longer processing time to make decisions and stay calm. Model what is expected at the beginning and during transitions of a new activity, and make sure that the child understands the role he/she is supposed to take on.
Keep activities simple, if this is the first time a child participates in cleaning up his/her room, start with just one part such as, fluffing up pillows, folding a blanket, or picking up dirty clothes. Again, focus on working together instead of making demands.
Lastly, keep it short and sweet, even when things are going great, an activity does not have to be completed or last for an hour. Remember in order to teach flexibility, the guide has to be flexible in making adjustments in the moment. It’s the guide’s job to make the call when to end an activity or when to take a break. Be encouraging and supportive during break downs, help the child to calm down and decide together to continue or to take a break.
Parents frequently complain that they lack ideas for new activities to do with their children. This is actually a perfect reason for parents to sit down with their child, and explore new possibilities. Explore ideas for new projects online, look at new cookbooks, or go to the library together.
Take a look at this inspiring video clip of Caine, a 9-year-old boy from Los Angeles, California, whose hobby of turning boxes into a variety of arcade games inspired other children and their parents to do similar projects.
For individuals with ASD, encoding meaningful moments in their lives is very challenging. They mostly remembered the static, peripheral and unimportant details, such as rules, sequences and instructions, instead of what they learn from an experience for future decision makings. This difficulty in remembering and capturing subjective experiences (Episodic Memory) is one of the main core deficits in Autism. Therefore a guide’s role in spotlighting critical moments is crucial in building competence and motivation to explore new things.
To strengthen pathways to Episodic Memory, parents along with their child could experiment with creating written or audio journals, picture books, recipe box, mementos, as well as sharing reflections of their new experiences (reviews).
To conclude this article, providing new opportunities for individuals with ASD would eventually lead to a greater sense of competence in future self-explorations. A study on adaptability in 29 children and teens with Autism through a period of 9 day-exposures to new opportunities that I conducted as part of my Master’s degree completion indicated notable improvements in all children. So parents, gear up and the changes would be well worth it!
Deloache, J. S., Simcock, G., & Macari, S. (2007). Planes, trains, automobiles-Extremely intense interests in very young children. Developmental Psychology, 43, 1579–1586.
Steven (15 years old) has been enjoying collaborative painting sessions with his Mom as a leisure activity on weekends.
Maisie Soetantyo is a parent coach certified in Relationship Development Intervention (RDI) method, a parent-based intervention designed to remediate the core deficits of Autism (RDIconnect.com). She is passionate about empowering parents with special needs children to make a difference at home.