Dear New Autism Parents: Here’s Your Roadmap
Shortly after my daughter’s first birthday I started wondering if she was autistic. Her language was developing differently, she seemed disinterested in most other people, and simply did not engage in pretend play. I didn’t know what to do or what to expect, but we stumbled through an autism diagnosis and into therapy.
In a lot of ways, we got really, really lucky: having a pediatrician who was willing to refer us for a test immediately, living in a state with mandated early intervention, and my own very flexible work schedule. And while I’m so proud of the way Emmy* is learning and growing through the work that we have done, together, I wish I had known more, sooner. This article (and all the others I have written so far), are essentially letters to a younger me. My hope is that another parent who is searching might be able shave some time off finding what helps their own child.
For those who want to read our whole backstory, I have a long-form essay on our personal journey to an autism diagnosis. Perhaps some of it will resonate with you. For those who are still on the fence as to whether their child may be autistic, you can read my much shorter article Is My Child Autistic? Surprising Early Signs. If you are even remotely considering getting your child tested for autism, please, read How to Test Your Child for Autism — What I Wish I’d Known, even if you read nothing else here. Knowing our experience has the potential to save you a lot of time and money.
Whether or not your child ends up with an autism diagnosis, I suspect you are reading this because they are currently struggling in one way or another. The good news is you do not need a diagnosis or a therapist or even a lot of money to start supporting them in meaningful ways. One of the biggest game-changers in our house has simply been changing the way we speak. Declarative Language** takes the demand out of verbal interactions, and thereby decreases the stress and anxiety the child may be feeling. The above links to the book, and you can also read about our first day of intensive practice with it in my article The Incident with the Peanut Butter: Our First Try at Competent Roles.
Talking about supporting autistic or other highly sensitive kids would not be complete without talking about meltdowns. Fortunately, they are few and far between in our house, and Emmy is more prone to “shut down” than “melt down.” We still do everything we can to avoid it, but shut down doesn’t have the same disturbance that a melt down has, and I think a lot of it has to do with how well Emmy manages to regulate herself. I’ve observed her carefully and not only learned her cues, but also her comforts. Emmy has free access to the things that help her regulate: soft sensory input of stuffed animals or blankets, uninhibited echolalia, and the ability to escape to a quiet place as often as is feasible. This is really not very different than any parent teaching a neurotypical child how to self-regulate when they are upset…just with a few extra steps. If meltdowns are an issue in your family, I hope that you’ll read Helping Your Child Avoid Autistic Meltdown, and find something that might bring more calm into your life.
Even the thought of your kid getting an autism diagnosis can be scary. I won’t sugar-coat it: some days are very hard. But I don’t think it has to be nearly as hard or as scary as some people make it out to be. I believe if more parents have more knowledge early on, everyone’s lives will be better. This article is not an exhaustive list, and there are many things we have not done. Some, we have no immediate plans for, such as ABA. Others, like nutritional therapy, we plan on starting in the near future (and you’re invited to follow along!). But this article is a starting point, and that is a lot more than I had. So dear new autism parents: welcome. Save this article so you can come back and reference the different parts when you’re ready, because it is a lot to take in. I hope you learn a bit here and are able to move forward in your autism journey faster. With more supports in place quicker, everyone’s lives can be a little more joyful.
*names have been changed. **affilate link, thanks for helping a mama out!
Annie Newman is a substitute teacher, mom, and aspiring children’s book author raising two children: one neurotypical and one autistic. You can also follow her day-to-day learning on Instagram and on Tiktok.