What can we do while we wait?

The diagnosis of autism in a young child is often one of the most impactful moments in a new parent’s journey. With that diagnosis parents typically go through an initial period of grief or feelings of guilt, along with many thoughts and conversations regarding the future. Then comes the feeling of empowerment, “OK, we know what it is, now where do we start?” Parents then begin researching ways to help their child. With this comes a sense of urgency; feeling that the clock is ticking down the time for intervention to be most effective. Even when they’ve found the right fit in a provider, they may be told there is a six-month wait list.

Now what? How can parents help their child while waiting for treatment to begin? Here are four things you can start to do right away.

Investigate: The best place to begin is by connecting and engaging with your child. This requires some investigative work. Start by observing what they do when they are by themselves. What are the things that make your child’s face light up? What activities, toys, or things draw your child to them like a magnet? Many children with Autism Spectrum Disorder (ASD) do not play with toys as they are intended. That’s OK! Just spend some time sitting with them and watching what draws their attention. Try to come up with two to three things to start. Sometimes it helps to make a list. Dr. Karyn Purvis states, “Research tells us it takes roughly 400 repetitions for a new synapse to form in the brain. When done through play, it is reduced to about 20.” (Parris & Hernandez 2024)

Connect: After determining some of your child’s favorites, it’s time to join them in those interests. This may begin by just sitting next to them while they are engaging in the activity and narrating what you see them doing. They like tapping on toys to hear the sound they make? Label that “tap, tap, tap.” They like stacking blocks or lining up cars? You can add color labels, as in “red car,” “blue block.” You can make sound effects, such as “vroom, vroom,” or “beep, beep.”

Try offering the next item they may want. If they just put the red car in the line, offer them the yellow one. If they don’t seem happy to have you touching their stuff, get your own set of what they are playing with and imitate what they are doing. For example, grab an identical set of cars and make your own line. If cars aren’t your child’s favorite, try one of these: blocks, farm animals, bubbles, balloons, letters, numbers, plastic solo cups, puzzles, feathers, rice or bean bins, water play toys, and cause-and-effect toys.

Expand: For children who are particularly protective of their toys or objects, it will be necessary to get your own set. This is OK! It will allow you to model different things in play that your child is not already doing. In order to expand, whether you have your own set or your child allows you to use theirs, think of some additional things you can do with the items. For example, if using blocks, narrate counting by stacking blocks and saying “One, two, three, crash!” Sound effects are a great way to catch a child’s attention in a fun, laid back way.

For children who do not usually prefer typical toys (meaning they like to tap on things, run fingers along items, or prefer visual stimming on things) think of ways you can join with them:

• Bring out pots and pans and tap on them.
• Turn off the lights and play with a flashlight (maybe add bubbles or balloons).
• Gather different textured items to touch while you label “bumpy,” “smooth,” “rough.”

Keep in mind, children with ASD often need repetition so if what you try doesn’t work the first time, don’t give up! Keep trying for a couple repetitions and then move on to something else.

Establish routines: We’ve discussed a bit about how to connect, engage, and expand activities with your child. Another important way you can help your child while you wait for treatment to begin is by establishing routines or rituals and including the child in carrying them out. While this sounds complicated, it really isn’t. Dr Becky Bailey states, “The brain is a pattern-seeking device. If an environment lacks clear routines and visual representations of them, children’s brains are preoccupied with trying to find the pattern rather than with learning. The more consistent and clearly represented your daily routines are, the more safely, smoothly and cooperatively things will run. (Bailey, 2014, p. 152-153)

Many parents already have clear bedtime, bath time, mealtime, and dressing routines established, so part of the work is already done. There is no need to change any routines, just think more clearly about the steps of them. Routines and even chores you and your child do together are great for learning. During these times, narrate. For dressing, some examples might be “shirt off,” “arm in,” or similar steps. During bath time, you can point to or pop bubbles. During bedtime, have them help. Label putting their dirty clothes “in” the hamper. During mealtime, include verbs like “eat,” “drink,” “help,” “want,” “give.” Doing routines with your child instead of for your child creates more connection and predictability which leads to deeper learning.

The beginning of the journey with your child’s new diagnosis of autism is met with so much waiting and uncertainty. Begin today with some of the things that seem small but will have a much larger impact than you can imagine. Investigate, connect, expand, and establish routines to begin the learning process while waiting for treatment to start.

SSM Health Treffert Center offers state-of-the-art comprehensive, multidisciplinary diagnosis and treatment of autism, behavior, and communication disorders in children and adults. Learn More about SSM Health Treffert Center.

References

Bailey, Becky A. (2014). Conscious Discipline: Building Resilient Classrooms. Loving Guidance Inc.

Donovan, Alex P. A. and Basson, M. Albert (2016). The neuroanatomy of autism- a developmental perspective. Journal of Anatomy, 230(1), 4-15.

Karyn Purvis Institute of Child Development, Dept. of Psychology. Parris, Sheri & Hernandez, Christian (2024). The benefits of play in cognitive development.

Rogers, Sally J. & Dawson, Geraldine (2010) Early Start Denver Model for Young Children: Promoting Language, Learning, and Engagement. The Guilford Press.