Here are the top ten things I wish I knew during the first year my now 4-year-old twin boys were diagnosed with autism.
1.) No One Knows.
This one is key: No one knows what they’re doing when navigating uncharted territory. Not only is the research unclear as to what causes autism, or truly what fully defines it, but no one knows specifically what your child’s autism entails. It is as unique as your child, or any other human being. No one knows what you’re going to go through as you support your child’s autism, and no one knows what the future holds for your child because of the autism. Most importantly, no one also knows what magic your child will bring to this world, so the best thing you can do for your child once given a diagnosis is to remember it’s only one more piece of the puzzle you are learning to put together about who your child is, and will become.
2.) It Will Be Different.
One of the hardest pieces during the first year for me, was how different our life was with the diagnosis. Like I admitted about being selfish at our best friend’s kid’s birthday party, it can be very lonely if you get in your own way of understanding what it means to be a parent to autism. Your child(ren) will need you on a level that a neurotypical child won’t, in different ways at different stages of life. Each family is as unique as it’s child(ren), so it’s not easy to say what it will look like, but if I have any advice, it’s to throw any expectations out the window about this next chapter of your life, and to be happy with Switzerland.
3.) Form a Parentship.
Get on the same page with your spouse when it comes to what it will take to support your child. Be a team: be a Parentship: aka a Parent-Partnership. If you are a superhero taking this on solo, find your village that will support you and make sure you’re all on the same page with how you can support your child. There is no time to waste with inconsistency of parenting autism. Instead of one step forward, two steps back, it will be ten. Understand how you will approach every situation of parenting differently now that you are aware of the diagnosis, in the unique way your child needs. Be ready to tag in the other if you need a minute, or work together as a united front during the difficult moments.
4.) Behavior is Communication.
You’re going to hear this a lot. Behavior is Communication. Let that sink in: behavior is communication. Speech, or the verbal communication we tend to depend on for understanding someone else’s needs, is typically delayed with autism, and sometimes, not always present at all. Behavior, however, and all the unwanted behaviors you can think of, will not only be present, but it will be your roadmap should you let it be. Your child(ren) want to communicate with you just as desperately as you want to communicate with them. At the end of the day, however, sometimes the only way they can do that, is through behavior, so pay attention. If you are finding harmful behaviors, like aggression, watch for the antecedent - what comes right before it. See if you can identify patterns where your child’s behavior is telling you something in that baseline. Keep a journal if you have to.
5.) Embrace If/Then.
I feel like our lives replay this storyline on an hourly basis. It can be as simple as, if you get dressed then you can go outside, to as complicated as: if I can just get Luca to communicate “too loud” to his brother, than I can keep him from hurting him. The important thing to remember about the “if/then” concept, is that it’s to teach the schedule of things, and to understand the domino effect of one’s actions. If you use it as a teaching tool, one where your child(ren) can start to grasp their control in the situation, they will be more responsive to unwanted tasks that lead them to preferred ones, beginning to program a growth mentality understanding. Children on the spectrum are brilliant, and if they can grasp this concept at an early age, the possibilities for their determined young minds are endless.
6.) Routine is Key.
As a Type A - Control Freak, it is not hard for me to stand behind this statement, but I will tell you, it is our saving grace in ensuring our boys can get what they need. During COVID-19, our routine has been altered dramatically, and taken weeks to regain traction. Whatever routine you can provide your child(ren) will give them control in what to expect. It will provide a calm understanding, where anxiety can be managed, because they can presently take part in what they know is going to happen. When you steer away from routine, they are in battle mode, trying to prepare for whatever the unexpected is that could come their way, making them immediately defensive. Think about it- when you’re looking forward to your day going one way, and then someone with power throws a wrench in it, completely altering what you thought that day could look like, you aren’t necessarily your best self for the remainder of it, right? Right. Routine is key.
7.) Understand Can’t vs. Won’t.
It’s incredibly to understand the difference between what your child can’t do, versus what they won’t do. Get to know your child(ren), and everything that makes them tick. As you start to really pay attention to understanding that behavior is communication, you will start to learn what they are capable of, and what they simply don’t have the tools for yet. I promise you, once you let go of whatever societal norms you thought you needed to uphold when it came to parenting, you’ll be the parent your child needs. You’ll also, like we did, learn what you can’t, versus won’t, do as a parent. This will bring you all on the same team faster and with far less emotional struggle.
8.) Sleep is for the Weak.
I have yet to meet a parent to autism who’s child hasn’t had some kind of trouble sleeping. Don’t get me wrong, there are amazing aids you can try, depending on what works for your child, including essential oils, weighted blankets, sensory sheets, sound machines, etc. For us, the sleepless nights with autism started when the boys left their cribs at age 2, and have been solidly present for the last year.
9.) Find Your People.
FIND YOUR PEOPLE. We are out there, in far greater numbers than your realize, and in all shapes and sizes. Some of your people will enter this journey with you, and if they embrace it and your child(ren), will come out as wonderfully changed as you are, and a member of our community. Some people, however, simply can’t, and that’s ok. There are so many others of us out there, that once you connect with someone who is walking in your shoes, can offer you what you need during this chapter of your life. Be open about what you’re going through, and share your story. It’s a beautiful one, when you embrace it, and it will only make you a better parent for your child(ren).
10.) It’s About Them.
Lastly, and most importantly, this isn’t about you, it’s about them. When you became a parent and began to give definition to what unconditional love means, you jumped all in. Even though this diagnosis will completely change your life, that’s what the best things in life truly do. For your child(ren), it will define theirs until you are able to help them find their voice on how they wish to define it from themselves. Remember to look for their magic, because it’s there. Remember that even when it’s hard, because it will be, it’s simply making you stronger for the next chapter that may require more strength. Ask for help. Accept help. Do whatever you need to do to be the parent they need you to be.