A Child I know is on the Spectrum: What Do I Say and Do?
This series is designed to help parents manage specific aspects of bringing up a child with a different learning path. This month we’ll be looking at what parents and specialists have to say on raising children on the autism spectrum. Previously we wrote about the diagnosis stage here.
When parents find out their child is on the autism spectrum, it can be difficult to explain to their friends and extended family what this entails. Similarly, often people are unsure how can they can show their support and create bonds with the child.
The First Key Reactions
One of the key messages for friends and family is that each child will be unique. We asked Lisa, who writes the Quirks and Chaos blog to give us some insight on what a family with an autistic child might need. Her view is that parents are also very different. In her case, hearing the word autism was “devastating” in the beginning. She needed people to listen and sympathise, without ever minimising her feelings, while she mourned the loss of plans and dreams for her son, and fretted about his future.
Kyle Jetsel from the Autism Laughter Therapy is also cautious about the first interactions with a parent that has recently discovered their child is on the spectrum. He warns against upholding false expectations. As a parent with two autistic children, he knows first hand that raising these children can be difficult at times, and may entail considerable sacrifices. Of course, overall, each family learns to love differently, grows and can thrive with their child, but parents should be prepared going into the adventure to “decide they will come out happy”, without trying to “fix” their child.
If you want to do additional research and be part of the parents’ lives, Lisa also advises asking them which book they recommend you read to better understand their child’s case. “The autism spectrum is so wide, the book I recommend might not be the same book your friend might recommend to you.” Showing that you want to read up and better understand will also reassure the parents on your desire to accompany them on their journey.
Interactions Within Defined Social Circles
You may know a family with a child on the spectrum, but not be close to the parents, and still want to do what’s best in social settings, or help put them at ease. Birthday parties and school events come to mind, as it can be difficult to anticipate what sort of interactions the child and their parents can manage and enjoy.
While social environments can be stressful for some people with autism, they also help improve social skills. Lisa’s son Tate attends a mainstream school, and many of the children there have grown with him. In first grade, Lisa gave a talk to the class about autism and explained some of Tate’s behavioural differences.
“I remember asking the students to promise me they would always be as nice to Tate as they were that year,” says Lisa. “Those students have made a huge difference for us. When one of them sees Tate struggling to pull on a jacket or find the correct page in a book, they jump up to help him. I’ve been out in public with Tate before and kids have come up to us said “hi”.” According to Lisa, none of these children get the same thing out of a friendship with Tate as what you’d normally expect, but their acceptance of his difference has given Tate a social network of sorts.
Interactions in Broader Social Networks
Lisa also encourages Tate to interact in public, even if it means telling a waiter that he will need more time to process information. Even though interactions with her son can be rather “strange”, as she puts it, and although relationships with him tend to be one sided – with Tate talking about his interests but mostly uninterested by whatever others may want to talk about -, these relationships do help Tate grow and develop. In fact, Lisa also points out that her son has created real bonds, mostly with adults – in part because they are more predictable than children -, and though these relationships take time – and humour – to build, they have had unbelievable impact on his development.
If you are confronted with the case of a child on the spectrum in your community, time and patience can help alleviate the initial awkwardness you may feel. Look to the parents for guidance if you interact with the child or their family. Most importantly, in the words of Lisa: “remember that an autism diagnosis is not nearly as scary as it first sounds. All the fears and apprehension will begin to fade somewhat after a time.”
Some additional links for parents looking for more information. Please also suggest more to us, which we can add to the list.
- Lisa’s blog: Quirks and Chaos, where she talks about life with her family, including her autistic son Tate and her adopted daughter with ADHD and foetal alcohol syndrome . Here’s a fun article on awkward social situations around autism,
- Autism Laughter Therapy: a blog and videos by the Jetsel family, living with two autistic sons and a life approach to happiness and thriving,
- What not to say to a parent of an autistic child (and what to say instead), by Lexi Sweatpants, at Scary Mommy
- Twenty things not to say to a parent of an autistic child (and what to say instead), by This Mama
- 12 things not to say to the mother of kids with autism, by Kathy Hooven, at The Mighty
Note: all images are curtesy of Lisa Smith (Quirks and Chaos)