5 Things I Wish Someone Told Me When My Daughter Was Diagnosed with Autism

Just before our daughter’s second birthday, we started noticing that things were not okay. She didn’t make eye contact, seemed fixated by the details of toys and didn’t respond when we yelled “stop!” as she went to touch an electrical outlet. When her grandparents said they were concerned that she seemed to have no reaction when they appeared in our living room, we knew it was time get an evaluation.

The years that followed after her diagnosis of autism spectrum disorder were filled with a revolving door of therapists coming in and out of our house, tests and evaluations and stacks of academic-type books on ASD that I was too exhausted to read. I wanted to find info from others who had walked this path, but every internet search led me down a rabbit hole of horror story after horror story that only made our situation seem more hopeless.

Now, ten years later, my daughter is a tween who loves music, reading and swimming. She has a supportive school and a gang of friends in a community that is accepting and open-minded. Here’s what I wish someone had told me back when she was first diagnosed. I hope it helps you if you’re currently struggling.

Because all of the message boards had scared me off, I was reluctant to seek out other parents of kids with autism. But when we moved to our current school, I met a group of other moms and dads in the same boat and quickly realized that it was so important to be around other people who just “get it.” It’s also been a great source for friendships for my daughter.

For the first couple of years, we sent our daughter to a preschool with a support person, hoping that being around neurotypical peers would rub off on her. I know hindsight is 20/20, but if I had it to do over again, I would have immediately gotten her into a school that offered ABA (applied behavior analysis) which is the proven method for helping kids with autism. (But that brings me to another tip which is don’t be too hard on yourself! I try to remember I made the best decision with the information I had at the time).

When she was little, I lamented the fact that my daughter was missing out on milestones such as the first day of kindergarten. But in retrospect, although there has been a lot we’ve missed out on, her victories are still enormous and worth celebrating–like learning to ride a scooter, the first time she came and got me from another room in the house or the fact that she learned to buckle her own seatbelt. There are so many of them and I try to celebrate them every day.

Social stories are simple stories, often with pictures and words, that can help people understand upcoming events, big changes and new situations. They can also be used to explain the nuances of interpersonal communication and even to develop self-care skills. We have used these stories to help my daughter understand everything from changing schools to mom taking a vacation sans kids to how to respect personal space and even practice proper hygiene. (Oh yeah and the vacation? Definitely do that, or at least carve out some time for yourself.)

This may be the hardest one for parents with a newly diagnosed child to accept, but listen–your child may be different, but they are not any less worthwhile than their typically developing peers. There will be challenging times and even maddening times, but the best way I’ve found to think about it is that you love them for them, but will do everything possible to get them as far as they can go. When you think about it, it's the same way you’d approach any child. So, no, there isn’t a cure or a way to fix your kid. You will experience challenging behaviors and heartbreaking moments on this journey, but there will also be ones of victory and amazement…and laughter too!