It’s been almost six years since my son was diagnosed with Autism Spectrum Disorder. He’ll be nine next month. He was three at the time of the diagnosis. But I knew long before that. He had three older siblings, and I’d been an educator for almost twenty years. At eighteen months, when he regressed in all developmental milestones and then failed to reach the ones moving forward, my Mama Instinct knew.
At first, the diagnosis terrified me. Eventually I felt relief. It was an answer. But then came questions. Followed by grief. Yes, it’s a thing. It’s real. And it’s okay. You eventually get past it. You adapt. You learn to accept and love the child you have, not the one you thought you’d have. And truth be told, at this point, I wouldn’t change a thing about him!
As I write this post tonight, I think about how our family looks nothing like I expected when I became a mother for the fourth time at forty-five. And you know what, it’s okay. It’s better than okay. It’s exactly how it’s supposed to be!
So I want to share with you ten things I’ve learned over the last six years after being blessed to be the parent of an autistic son.
1. Autism is Normal
Between 10 and 30% of the population is neurodivergent. Neurodivergence is a normal part of the human genome. Understanding and accepting this means that as a society (and as families) we can move past our kids are “different” to that our kids are just a part of a smaller segment of a normal population.
2. Traditional Parenting Sucks
By traditional parenting, I mean the crime/punishment model. Parent makes a rule. Child breaks a rule. Parent dishes out an unrelated and often severe punishment. This model doesn’t address what all behavior experts argue (with data to back it up), punishment doesn’t teach what to do instead. When children engage in maladapative behavior, it’s our job as the adults to figure out what is standing in the way and help.
3. Routines Matter
Our autistic kiddos thrive on routines. So when you can, honor that. Respect your child’s unique needs, as you’d expect and hope those who love you would as well.
4. But Learn to Pivot
A much as we want to honor their need for routines, it is also our job to help them learn how to pivot. Life is full of change. If we don’t teach flexibility, we are setting our kids up for more struggles. Working with a licensed behavior analyst is one of the best ways to help teach these advanced skills with intention.
5. Your Child’s Truth Should Be Embraced Over Your Hopes For Their Future
When people ask me if I think my son will go to college, live independently, or get married, my response is always the same, “I don’t care.” And I don’t. We will cross those milestones when/if we get there. And we will make decisions based on his highest level of independence and what he wants to be happy. That’s is. No further discussion necessary.
6. Focus on Their Strengths
In as much as we want to help our autistic children where they struggle, we must also work to help them build their strengths. And every child has them! My son’s strength is Roblox. And although some parents may not consider this a strength, it is. He’s SO good! And since his dad is a video game developer we encourage it—and we encourage it big. Maybe he’ll choose to follow in his father’s footsteps. If not, that’s okay, too. But for now we love that he’s found something he’s good at.
7. Slow Down and Appreciate the Small Things
In the early days of the diagnosis, I spent every moment I could in a frenzied search for everything I needed to do to help my son. And rightfully so. But at some point, it’s time to let that go. Yes, it’s important to make sure insurance is covering what they should and IEP’s are up-to-date. But at some point, slow down. Hang out with your child in their room and watch a YouTube video you have NO interest in and find out why they do. Let them tell you each Godzilla movie by release year. Laugh. Listen.
8. Learn to Ignore Unsolicited Advice
This one probably should have been Number One, because it’s that important. I can’t count the number of young families who have come to me in shambles because their parents are strong-arming them to use the same ineffective parenting strategies they used. Nope. Don’t do it. And not that grandparents (and other family members and friends) don’t have the best of intentions, because they do. But the strategies that work with neurotypical children, won’t work with our kiddos, at least not long term. Trust your support team of autism experts, therapists, and medical providers. And most importantly, trust your instinct. I promise you, it’s right!
9. It’s Okay if Your Child Eats on the Toilet
I mean this both figuratively and literally! There was a time in our son’s journey, where there were way bigger issues than where he ate. But now, on the other side of said bigger issues, we are finally at a point where we are working on skills such as eating with the family, eating a wider variety of foods and sleeping without a pullup! Can I get an AMEN! The point is, where your child is developmentally, is where they are. And while we continuously scaffold skills, it’s a process. Embrace where they are now and you’ll get them farther down the road more quickly than if you push them faster than they are ready.
10. Be Honest with Them
Many parents hide their child’s diagnosis from the child and others. And I understand that some families don’t want their child “labeled” or for them to feel there is something “wrong” with them. This couldn’t be farther from the truth. If your child had an allergy to a certain food wouldn’t you want them and everyone around them to know to keep them safe? It’s the same thing. My son knows he is autistic. He knows why his behavior therapists work with him. His friends all know he’s autistic and what that means. It’s called self-advocacy. When your child understands the complexities of their uniqueness, then they are much more equipped to thrive in a world that sometimes isn’t equipped for them.
So there you have it. If you are a parent or family member of an autistic child, I hope this was helpful. I hope this post gave you permission to just let some things go and embrace your child and your family! If you are outside the autism community, I hope this gave you a glimpse at what it’s like for families that celebrate neurodiversity on the daily.
Resources
For more resources about autism spectrum disorder, check out my books Goldilocks and the Three Bears: Understanding Autism Spectrum Disorder, is a tool to teacher neurotypical children about their neurodiverse family members and peers. It Takes a Village: How to Build a Support System For Your Exceptional Needs Family is step-by-step guide for families to help them build a support system so their family thrives!
Autism.
Author Unknown
It’s not a word to fear.
It’s a person to love.
Big Abilities 
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