As a friend or a family member to a loved one who has recently received an autism diagnosis, it can be challenging to know the right way to be supportive. Here are 10 Things Parents with Loved Ones on the Autism Spectrum Would Love to Hear, written by the friends and family of someone with autism.
#1 Recieve the News with Respect
As a friend or family member or a loved one with autism, it is normal to want to know more about the diagnosis. It is important to know that questioning the diagnosis is usually more harmful than helpful.
People often say: “Maybe it’s a misdiagnosis – I’ve heard they are overdiagnosing things these days.”
Better to say: “He’s lucky to have an observant parent learning about his needs. Thanks for trusting me enough to share this – I am here for you.”
#2 Spend Time Together
Caregivers for someone with autism would love to have more free time, but typically this is not the case. You can help by spending time with them in ways that are flexible to their schedule.
People often say: “Are you getting enough time for yourself?”
Better to say: “Can you find time to catch a movie or have dinner out with me next week? If you can’t get out, can I come by?”
#3 Be Sensitive to Sensory and Developmental Needs
People with autism are often sensitive to sensory information (touch, smell, noise…). In addition, sometimes developmental delays can accompany autism (for example delayed speech). This is NOT the case for all people with autism and you can help your loved one by asking thoughtful questions to learn more about their needs.
People often say: “I got him this gift – I know it’s technically a little young for him, but I thought that it might be more his level.”
Better to say: Call ahead and ask what the child would like, or, when in doubt: gift card.
#4 Don’t Ask Questions About the Family’s Genetic Background
This is a deeply personal issue and with some disorders, it’s still unclear if they stem from genes, environment, or both. Listen only to what the parent volunteers.
People often say: “Do you know whose family it came from?”
Better to say: Nothing.
#5 Offer to Lend a Hand
It can mean the world to a caregiver’s busy schedule when a friend or family member offers to help out.
People often say: “Life doesn’t give us anything we can’t handle.”
Better to say: “So, when can I babysit?”
As a friend or family member, it is natural for you to want to say the right thing – but it can be difficult to know exactly what the right thing is. One of the best things you can do to help a parent of someone with autism is to give them the space to talk and to be a good listener in response.
People often say: “This is an opportunity: You just didn’t land where you expected, but landed. You thought you were going one place, but just ended up in another place. Have you seen that wonderful poem, ‘Welcome to Holland?’“
Better to say: “I’m here if you want to talk.”
#7 Resist Passing Judgement
Recognize that communication – particularly the ability to understand language receptively – can be an issue in some disabilities. This can look very different from the outside; try to resist passing judgment.
People often say: “Maybe he just needs a little more discipline.”
Better to: Ask questions and listen.
#8 Learn the Facts About Autism – From Trustworthy Resources!
With the influx of information in the news and media about autism, there is a lot of noise and unreliable information. You can help by reading responsible research and presenting these facts, objectively, to your friend or family member affected by autism.
People often say: “It’s too bad you didn’t find out sooner. I’ve heard the prognosis isn’t as good if they don’t catch it early.”
Better to say: “Can I help by reading up on the current resources and research? I’d be interested in learning more and I’m happy to help fill out forms/laminate PECS/help with your laundry.”
#9 Be Inclusive
Families affected by autism often feel isolated, you can help by including them whenever possible
People often say: “I don’t know how you do it.”
Better to say: “So – when’s our next playdate?”
#10 Treat Them Normally
An autism diagnosis can be overwhelming, sometimes the best thing you can do to support a family affected by autism is to treat them normally!
People often say: “So how is “Junior” (child with special needs)?” Not asking about your other kids, family, etc.
Better to say: “I love your holiday cards/Facebook posts/email updates. What’s the latest?”
In 2017, Autism Canada, The Pacific Autism Family Network, and ARI facilitated a think tank on ASD in adulthood and later life in Vancouver, BC. Meetings focused on collaboration around common priorities