“He doesn’t look autistic to me.” “Don’t worry, she’ll grow out of it.” “Why won’t he just eat what everyone else is having?” “She’s just being a brat.”
Oh, the holidays; that treasured time of year when every random cousin and uncle at family gatherings seems to have an “expert” opinion to share about your child’s autism. So how can you handle insensitive comments? Here we’ve asked local autism experts to share their best tactics on helping friends and family understand autism.
Megan Peck, Owner and Lead Therapist at Mini Minds
It’s helpful to first understand what your relatives may be thinking and feeling. Just as you may have been overwhelmed by confusion and grief when your child was first diagnosed, others in your family may be experiencing these complicated emotions as well.
To increase family members’ understanding and support, discuss your personal feelings. Share your feelings of grief, sadness, frustration, joy and hope. Share accurate information on your child’s diagnosis. For example, if your child flaps his hands, explain how this is a form of self-regulation and point out ways a typical person may self-regulate, such as chewing gum or tapping their feet. Be a role model and show your family members how to make your child giggle, or how to engage them in a game, or how to calm them when they are sad.
Be upfront with your relatives if they are saying things that are hurtful to you. At the end of the day, diagnosis or no diagnosis, we all want to be loved and respected. Set a boundary with your relatives if needed, such as, ‘I understand you may think she doesn’t look like she has autism, but a well-respected doctor has confirmed this diagnosis, and we value his opinion in our family. If you feel differently about our child’s development, you may either ask us for more information so that you can better understand our position, or we ask that you please keep your opinions to yourself.’ Then make an excuse to exit the conversation, find your child, connect with them and remind yourself you are an amazing parent and advocate!
Shana Ritter, Executive Director of Foundation of Autism Resources (FAR) www.autismresource.org
Well-meaning relatives can say things that hurt and reveal how little they understand about autism. FAR families say they take a deep breath and keep explaining. Here are some responses to all-too-common comments.
He doesn’t look autistic. You could say, “He’s in his element here. Everything else gets to shine through.”
He seems better now. You could say, “Autism doesn’t go away, but therapy makes a difference.”
She’ll grow out of those tantrums. You could say, “Imagine if you were standing in front of a siren and a jackhammer and flashing lights; that’s what it feels like to her, all the time.”
Staci Small, Registered Dietitian with The Wellness Philosophy Inc. www.thewellnessphilosophy.com
Holiday gatherings can be difficult to navigate when following a special diet, especially for children. Parents should consider educating extended family before a gathering to avoid awkward conversations at the dinner table. Some basic facts to share:
-Individuals with autism have been shown to have a higher incidence of GI issues as compared to their typical peers.
-Individuals with autism often have physiological reasons for limited food intake, including nutrient deficiencies affecting taste and appetite; mitochondrial dysfunction, which can affect the ability to adequately chew, swallow and process food throughout the GI tract; and food allergies and sensitivities causing a need to avoid particular foods.
Another consideration is to host the event so that the child following the special diet will have many food options. No matter where the gathering is held, parents should ensure at least a few dishes are available that their child will be able to enjoy.
Lisa Steward, Clinical Director at Indiana Behavior Analysis Academy www.indianabaa.com
Most, if not all, parents will experience a moment when they and/or their child will be targets of such cold, naïve comments, and when it happens, parents may not have the time or patience to provide others with an education about autism. I recommend parents have a rehearsed statement or a few printed cards available to quickly hand out. These statements or cards can give basic information or could direct the individual to a website or organization that offers information about autism.
For more holiday planning tips, visit The Indiana Resource Center for Autism at www.iidc.indiana.edu/index.php?pageId=570.