“Maybe it was mother’s intuition, maybe it was all the reading I was doing,” shares Frida, whose six-year-old son, Albie, had just recently been diagnosed with autism spectrum disorder. “After we got the diagnosis, I really wasn’t surprised, so I was ready.
“What I wasn’t sure how to do was tell my parents and sister. I knew how I would tell the school because was that part of the doctor’s promise to help me with that extended support system. But when it came to my own friends and family, it really hit me that that felt like the hardest part.”
It may come as a surprise to others that this is typical, since autism awareness is growing. But because there’s still so much misinformation floating around social media and in between social circles, many people might not truly understand what autism means, what it looks like, and how to treat the autistic child.
For some, there’s a resistance to the diagnosis. You may have to respond to friends or family members who tell you your child has been misdiagnosed or that your doctor is overreacting to their behaviors, or that it’s a “made-up disease.”
But it’s not a disease. It’s not an illness. It’s not a diagnosis that’s handed out thoughtlessly or carelessly.
You now know, after having had your child evaluated, that they’re atypical in development. They may be struggling in certain arenas, like basic life skills or social skills. They may be impaired in other areas of life, in ways the eye can’t easily see. So you owe it to your child – and to you – to have a supportive team, a group of people who are given the chance to understand the diagnosis. They may need compassion as much as you do.
Back to basics
It might be helpful if you explain to your friends and family that autism spectrum disorder-related behaviors are categorized into two distinct groups: difficulty with social skills (challenges with responding to social situations or pleasantries, like small talk), and repetitive behaviors and restricted interests (for example, they may only want to play with one thing over and over, must take the same route home every day, or insist on talking about one particular interest at length, like a favorite TV character).
Explain that autism is not an illness or disease, but a lifelong neurodevelopmental disability that begins in utero. It has nothing to do with how the child is raised, bad parenting, or health decisions that parents have made.
Put a spotlight on behaviors
You may also want to highlight certain behaviors your family members and friends may have already noticed as a way to explain what autism spectrum disorder is.
Let’s say they’ve witnessed your child have a meltdown. Let them know that’s not your child being spoiled, rude, or having a tantrum. It’s a very real emotional explosion, an inability for them to contain how they may be hurting, confused, or anxious. It could be due to a change in routine or a disappointment.
They may have noticed your child does not respond to their name being called out, or they don’t make eye contact. Let them know your child isn’t being rude then either. It’s a symptom of autism spectrum disorder, and very common.
Ask them what their image of autism has been
Hollywood is doing a better job with representation, but it – and society as a whole – still has a long way to go. Due to so much misinformation, your family and friends may not realize their own prejudice or preconceived notions of what autism spectrum disorder actually is.
Let them know autism doesn’t look like anything. It’s not a disease or an ailment that can be pointed out. Rather, it’s a spectrum of behaviors, and every single autistic person on the planet is different. Some talk a lot, while others don’t speak at all.
They may come to realize that it’s true – you can’t put an autistic person in a box. They’re all very different, and special in their own right.
Be ready for difficult and challenging reactions
Your friends and family may say things that hurt.
“Autism isn’t real.”
“Your child has been misdiagnosed. Get a second opinion.”
“You did this to your child.”
Remember that that initial diagnosis may be just as hard for others to hear as it is for you, and in some cases, even harder. It might take them some extra time to come around and understand. It might take them even longer to be supportive.
It’s normal for people to be confused, angry or frustrated – for many, it’s all part of the process.
If you’re the parent or primary caregiver, don’t be surprised if you feel alone and overwhelmed. It’s important for you too to seek support, and that can come by way of making friends with other parents who are going through what you are.