When our two-and-a-half-year-old son’s speech and language therapist suggested we have him tested for autism, we were taken aback. By the time we got the ASD diagnosis, we had done a lot of reading, taken surveys about his behaviors, and talked to people in the know. We’d started living with it before it was even official. Yet, it was still hard for us to accept. We didn’t tell our friends and family until we got the official diagnosis, so they were ill-prepared to deal with the news. The conversation went a little like this…
Me: “We’ve been concerned about Noah’s development for a while and have had some tests run.”
Family Member: “You mean his lack of speech? You know his dad was a late talker.”
Me: “Yes, I know. It’s not just that. He doesn’t respond to loud noises or when his name is called. He doesn’t point or follow someone pointing. There’s other things, too.”
Family Member: “He’ll grow into it.”
Me: “Probably not without some help. He’s been diagnosed with autism.”
Family: “What? That’s ridiculous. You’re still going to love him, aren’t you?”
Me: “Of course. Yes, of course.”
Family: “He’ll be fine. Just love him and give him time…”
I didn’t have the time or sense to help my friends and family with their own journey to acceptance. I was too overwhelmed by all the intervention therapies to analyze what my loved ones were going through. I just knew it hurt that they didn’t immediately provide the support and acceptance we needed. Some of them were angry with us, and some rejected the diagnosis. We had to remove ourselves from some of them. We had to take care of ourselves, and that left them mostly in the dark. Those relationships became strained, at best, and contact with many of them became infrequent.
Seven years later, I look back to all of that and can more easily understand why some of my friends and family had such a hard time accepting the diagnosis. I see I could have done more to help them by raising awareness.
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So, here are some things I recommend you do to help others understand your situation:
- Before you share the diagnosis, share your concerns that led to the diagnosis. Do a kind of time travel back to when you started your journey and feed them small bites of the big pieces that equal a diagnosis. Give them a few days between bites of information so it can sink in or so that they can look for and see it in your child. Take them on your journey. Since you now know the importance of the flags, you can stress symptoms such as no pointing to your friends so they can learn as they go
- On social media, post autism-typical situations of your child (you don’t have to post pictures of the child) as often as you post the times when he/she appears typical. You could post a photo of your breakfast of an omelet and your child’s breakfast of dry corn flakes. That’s if you have a chance to have breakfast!
- When people ask how you’re doing, give your standard response such as “okay” or “fine” but follow it up with a brief example of one task you did that day that is atypical. Something like: “Okay, I only had to get up twice with my nine-year-old last night”
- Supply close family and friends with “black out times”—those times of the day when you really are not available for a quick phone call or text chat. In my home, that is around meal time
- Teach family and friends some of your strategies so they can see how modifying their behavior can result in the behavior they want from your child. You’ll know my friends because they use “first, then” statements with my kid, and with theirs
- Recommend books such as Raising a Child on the Autism Spectrum: Insights from Parents to Parents by Mallory Griffith and Rachel Bédard to help them get to your level of knowledge about ASD
It might seem easier to leave those bridges burned, but the reward is getting back that support system of family and friends who needed a little help understanding an autism diagnosis.
This article was featured in Issue 113 – Transitioning to Adulthood