12 Truths About Having a Child With Autism
You'll see the world differently, there's no such thing as "typical," and you really can survive on coffee
As she's gotten older, I've found my sea legs and autism has become just another part of our lives. And while every family's experience will be different, I've learned many truths about parenting a child with autism-especially to let go and enjoy the (sometimes loud and flappy!) ride.
1. There's no such thing as a "typical" child with autism. Some kids with autism are verbal and some aren't, some of them are savants while others struggle with basic life skills, but all of them have their own quirks and challenges. While it's tempting to try to force children with autism into narrow labels, autism parents know their kids need more or less support by the day-or even by the minute.
2. You really can survive on coffee. Most babies settle into regular sleep patterns after a few months, and one magical day they even begin to sleep through the night. Some children with autism sleep less than what seems humanly possible, and their parents learn how to get through their days on buckets of coffee and fumes.
3. What goes up always comes down. Child development charts and graphs portray a lovely, steady rate of growth. Progress for kids with autism often looks more like a roller coaster. Sometimes, for every gain and period of substantial growth, there's an inevitable regression. But eventually you learn that kids will move forward in their own way and on their own timeline.
4. You're a chauffeur. Kids with autism are busy. They may have applied behavioral analysis (ABA), occupational therapy (OT), speech and language therapy (SLT), physical therapy (PT), social skills groups, counseling, and all sorts of other therapies ranging from aquatics to horseback riding. Learning the acronyms alone is a full-time job, but when you add in all of the hours of driving back and forth between therapy offices and the hours spent sitting in waiting rooms or the local coffee shop, it's a full-time gig.
5. Deja vu takes on a whole new meaning. You really did have that conversation before-many times before. Some kids with autism will script their conversations, repeating the same words or phrases, until it can feel like you're trapped in the movie "Groundhog Day." On the plus side, it makes having a conversation with your child effortless. Just don't forget your part of the script!
6. Comparison will only bring you down. It's hard not to compare kids with autism to typically-developing children. But whenever you begin comparing, you lose sight of what makes your child unique and special. It's normal to grieve the loss of the life you expected for your child, but it's important to keep your focus on the amazing, wonderful child you have.
7. It takes a very special village. Life isn't always easy as an autism parent. Whether it's the stranger in the supermarket who glares at your crying child, the restaurant patron who reminds you that "in her day" children didn't need tablets to get through a dinner out, or even the family member who says your child just needs more discipline, parenting a child with autism can feel isolating. Find your tribe of other autism parents and lean on them for the understanding and support you need. They'll totally get it-and you.
8. You see the world differently. Children with autism have a unique way of viewing the world. The more you let your kids express themselves, the more you'll understand and even begin to appreciate why they flap their hands with joy and feel music through their entire bodies. It's a different way of being in the world, and autism parents get a glimpse into it-whether from under the table at a restaurant or shouting with glee outside the pet store.
9. What worked yesterday might not work today. Parents of children with autism have a plan for everything. The problem is that kids with autism are always growing and changing. The perfect plan from yesterday may not work today, and, in fact, it may make things worse. No matter how the day goes, you're more attuned to your child than a bomb-sniffing dog, and you'll become the master of defusing their meltdowns.
10. Everyone is not "on the spectrum somewhere." Autism is a spectrum disorder and many well-meaning people will tell you that everyone is on the spectrum somewhere. Unfortunately, that's just plain not true, and it's dismissive of the challenges children with autism (and their parents) face. As tempting as it is to tell off ignorant people, it's always best to opt for educating them about autism instead. Just think of how well you're modeling positive social behavior for your child!
11. Choosing a preschool is tricky. As you try to find the right preschool, you'll need to decide whether to send your child to a traditional preschool or a developmental preschool, and figure out how to balance preschool with all of their therapies. On the plus side, it will give you a few hours away from your child while they learn and grow. Talk about a win-win situation!
12. Taking care of yourself is essential. Parenting is hard for everyone, but kids with autism need more intensive support and that takes its toll. Unless you learn how to recharge your own battery, there won't be anything left to give your child. Take time to get a break for yourself, and when all else fails, there's always the bathroom to hide away in for a few minutes!
Parenting advice is given as a suggestion only. Parents should also consult their healthcare provider. The author's views are her own.