It still not easy to say “My son is autistic”, not because it is hard to accept it, I made peace with that long time ago ( I wouldn’t have a blog if I wanted to hide this, right?), but because I never know what people’s reaction will be. And some of them can be very hurtful. I am blessed to say that 98% of the time I had a supportive reaction, and had more good surprises than bad. So thankful for having so many loving, compassionate and respectful people around me.
Your friend or relative’s child was just diagnosed with autism, and it’s awkward and uncomfortable and you don’t know how to respond.
I get it.
No one does.
Here are some basics, both from my own experience and from hearing many autism families share on various message boards about what was helpful and unhelpful in the very beginning.
Call your friend. Texting doesn’t count! (Younger parents—I know you disagree on this. Take it from a forty-year-old. A real live phone call goes a long way!) Ask her how she’s feeling. Let her know that she can vent or cry to you. We are all afraid of being downers to other people. Knowing someone can handle the hard stuff means everything.
Bring over a cup of coffee. Or a casserole. Or a bottle of wine. Or fourteen Cadbury bars. I’ll always remember the friend who came by with Starbucks when she heard. The little things really do count the most at these hard times.
Keep inviting your friend to all things you would normally do together. Storytime on Tuesdays? Invite her. Playdate after school? Invite her. Your friend will decide if an outing is too much—but the worst thing is for her to feel isolated or rejected by the lack of invitation.
Treat her child the same way you always have. If this is your nephew and you have always had free reign to correct his behavior, keep it up! We want our kids to have as typical a life experience as possible, which means typical experiences with every day people. Unless or until your friend asks you to treat their child differently, just keep up business as usual.
If you can offer to babysit, do it. You cannot imagine the to-do list that was just dumped on your friend’s lap. Diagnosis means endless phone calls to insurance companies, state services, school districts, early intervention, speech, PT, OT, endless coordination of appointments, reams and reams of paperwork, and a whole reorganization of life as she knows it. And all of this has to be done while she is feeling grief, fear, and confusion—and still parenting and working and cooking and cleaning and all the daily stuff of life. Even if you can supervise the kiddos downstairs while your friend starts her list of phone calls upstairs, it will help. A lot.
Do know that your friend is genuinely mourning a loss. I know it’s taboo to say that early diagnosis is a time of mourning, but honestly, it is. Imagine going from typical parent dreams—that our kids will be athletes, valedictorians, successful spouses and parents—to simply wondering if they will ever live on their own, hold down a job, or even speak. There is grief there. Treat your friend as you would any person going through a tough time.
Don’t use a bunch of platitudes to try to make the person feel better. “It’ll be all right, it’s all good, everything happens for a reason, you’re the best person to handle all of this.” These things don’t make us feel better. They might make you feel better to say, but they make us shut down the actual expression of our feelings, our fears, and our intense new stress.
Don’t say, “I’m sorry.” Honestly, this doesn’t bother me personally. (I agree with the writer) When people say, “I’m sorry,” I assume that they mean they are sorry because it must be stressful and scary and hard—which it is. However, I know that many, many autism parents hear this differently and find it very offensive. Not worth the risk.
Don’t avoid your friend, assuming they want space. If you give someone space without first asking if they want space, they basically feel rejected and isolated. Everyone wants the choice of space. No one wants space forced upon them. Invite your friend out as you normally would, and do not take it personally if she can’t participate for a while.
Don’t stop bringing your child around the child with autism. I had regular weekly playdates with two friends and their kids for the two years prior to diagnosis—and literally never saw again afterwards. Both sent texts: so sorry, hang in there, and then had excuses every single time I texted for our typical playdates. I got the message pretty quickly—but it was still shocking, and still stung like crazy. Your child will not be stunted by hanging out with an autistic child. In fact, your child will definitely have autistic peers in school, so might as well start their education (and your own practice of inclusion) now.
Don’t humble-brag/compare/complain about your neurotypical kids. “I’m sure he’ll start talking. It’s just like how we never thought Billy would win gold at State, but then he did!” No. It’s not.
Don’t assume there is some huge, glowing autism community that has scooped up your friend and given her a fabulous social life. There isn’t. This disorder is wildly isolating for families. Plus, even when we meet other autism parents, the spectrum is so huge and our experiences so different that it’s still often hard to connect. The lucky ones will find a few great people along this road, but in the early days, we really need our long-time buddies.
Now call your friend and get to Starbucks and put on your listening ears. She will remember it forever. I promise.