Early Intervention and Autism Diagnosis
Here is a recent question I received about how to talk about autism with parents of young children and my response.
As an Early Interventionist I find that I am frequently working with parents who may themselves be on the spectrum. Sometimes they don’t see their child’s behaviors as a problem because they were the same way as children. Do you have some strategies that would help?”
Recently I did a home visit autism screening with an Early Interventionist because the mother was concerned after both the Interventionist and the child’s pediatrician mentioned autism. The mother told us she was just like her son as a child and continues to be comforted by routines and rituals. As she researched autism on the internet she became alarmed and anxious because her experience was twofold. She was recognizing behavior patterns in her son but in herself as well.
A strategy that is helpful and empowering for parents is when Early Interventionists focus on using descriptive language instead of labels. Autism is such a daunting word, and especially for parents of young children, it is often associated with anxiety and dread.
When you spend time carefully observing and interacting with the child using the sensory entry point to gain the child’s perspective on the world, you can empower that parent to better understand their child’s differences. You can start an ongoing conversation about strategies and interventions in an accessible way that is not always available when the conversation centers on the diagnosis and the clinical words associated with a diagnosis of autism.
With the parent I just talked about, I spent time watching her son and then connecting with him through the shared enjoyment of sensory objects—in his case, sensory stress balls and inset shape puzzles—before the topic of autism was broached.
Before we talked about autism we talked about how her son sees the world and how best to form a connection with him. She was able to watch her son relate well to a new person and to recognize that the connection occurred because the child’s worldview was being understood.
The mother made important connections about how the strategies she was using to help her son make communication and social strides were working precisely because she was naturally following her understanding of her son’s differences in development.
For example, she noticed that he studied the details of pictures and began using pictures as a way to prepare her son for transition times. We were able to talk about how the pictures helped her son better anticipate transition times, making them less stressful. She noticed that he responded better and was less prone to tantrums and agitation when she used visual prompts along with talking to him.
This discussion led to her understanding that her son’s organizing principle was visual rather than based on the use of oral language or social cues.
Talking about how a young child is showing differences in development in the three key areas of language and communication, social relationships and emotional responses, and sensory use and interests provides a framework for parents to think about and understand their child.
I talk with parents of young children about their child’s differences in each of the three key areas and gain consensus on their perspective before I bring up the “autism” word. By talking about differences in development, we can discuss the child’s areas of strength and abilities as well as the areas in which the differences are linked to areas of difficulties such as social language and social play.
This discussion, accompanied by my drawing the descriptive triangle of differences in development (see Chapter 6 in my book Autism Conversations for more information on the use of the descriptive triangle in sharing the diagnosis with parents), provides a natural opportunity for the parent to talk about connections they make about themselves and their worldview.
The use of this approach to talking about autism spectrum disorders shifts the dialogue from being about identifying problems to identifying differences. This shift is profoundly important in helping parents go through the process of understanding and dealing with an autism spectrum disorder diagnosis.
The word itself—autism—becomes far less daunting when the focus of the conversation is on the child’s nuanced behavioral profile instead of the label.
If parents tell me they see the pattern of differences in themselves, then I talk about how that will help them be more in tune with their child’s needs. I also emphasize how the understanding of the child’s differences in development helps us form a bridge using the child’s natural strengths to help develop skills in the areas that are more challenging for him or her. Remember to focus on listening to the parent rather than diagnosing the parent.