Lessons Learned

Eight Things My Autism Spectrum Kids Have Taught Me

According to the CDC, approximately one in every eighty-eight children is diagnosed as being on the autism spectrum.

If those are the odds, then Katie and I must be overachievers. Out of our six children, five are on the autism spectrum. That’s eighty-three percent of our kids. Three-quarters of our family. Granted, they’re high-functioning, but they show many of the classic signs: social awkwardness, anxiety, strong perseveration, narrow focus of interest, sensory processing dilemmas, and a variety of learning glitches.

When Katie and I started receiving the diagnoses about three years ago, we did what any normal couple would do: We panicked. Then we grieved. Then we read. Books, blogs, articles—we devoured them all. But while we learned much about the science and the prevailing theories and therapies, and while we have benefited from the experience of those who have traveled this path before us, our greatest teachers have been our kids. For all the challenges they face, they are amazingly resilient, loving, and wise. So let me pass on some of the lessons they have taught us.

1. It’s Not All about Autism.

When our kids started getting diagnosed, I began to look at them through the lens of autism. “He’s so skinny. Must be the PDD-NOS.” “All her struggles at school are because she has asperger syndrome.” “It must be the autism that has delayed his development.” But as Dr. Freud would say, sometimes a cigar is just a cigar. Maybe he just has an active metabolism. Maybe she struggles in Math because she’s right-brained. Maybe he’s just a late bloomer. Over time, we learned that they’re not our autistic kids. They’re our kids, and they happen to be on the autism spectrum. Autism is only one part of the wonderfully complex mystery that is each one of them.

2. Breathe.

I can spend so much time and energy trying to help my kids. Are they getting the right therapies? Have I been aggressive enough advocating for them? Am I up on the latest research or behavioral intervention? But at the end of the day, my kids are going to be who they’re going to be, and I won’t be a bad parent if I slow down and enjoy them. It’s not up to me to try to fix them. It’s up to me to help them become the best versions of themselves possible. Besides, they’re not broken.

3. Say What You Mean. Mean What You Say.

Kids on the autism spectrum tend to take things literally. Irony can be lost on some of them them—along with simile, metaphor, and hyperbole, for that matter. So you’ve got to choose your words wisely. In my family, this is more true for some than for the others, but I still have to be pretty careful. It works the other way around, as well. Kids on the spectrum can be very blunt—not out of a cold heart but simply because they don’t get how their words might affect someone else. So learning how to talk with them has made me more straightforward. And it has given me a thicker skin.

4. Be Gentle.

Any parent of kids on the spectrum knows how sensitive these children can be. Loud noises and raised voices can set them off. Trying to rush them out the door backfires. Correcting them too harshly (especially when I’m upset myself) only leads to meltdowns. I’ve learned the supreme value of a soothing tone of voice, a gentle tap on the shoulder, and plenty of lead time before a new activity. Back rubs and warm embraces to a long way as well. You really do catch more flies with honey than with vinegar!

5. No One Knows Like You Know.

It never ceases to amaze me how eager teachers, neighbors, and family members can be to offer diagnoses and prognoses, opinions and suggestions. It shouldn’t surprise me, but it still does, to hear a school administrator or a well-intentioned church member tell me how to raise my kids. The world is filled with “experts.” But in the end, it’s your child. You know him better than anyone else. Of course you should get insight and advice from real experts in the field. But more than anything else, you have to go with your gut.

6. “How” Is Better Than “Why.”

When our fourth child was diagnosed (our first diagnosis), I was anxious for his future. Then our second got her label, and I got angry at the unfairness of it all. Then came our oldest, and I was genuinely scared. By the time we got a diagnosis for our youngest, I was numb. What did these kids do to deserve this? Or was it something Katie and I did? But rather than dwell on why my children have these disorders, I’ve found that it’s better to ask how. How do I raise them in a way that affirms their dignity and builds their self-assurance? How do I advocate for them and prepare them for the day when they will have to advocate for themselves? How do I help their unaffected siblings understand the challenges they face and embrace the gifts they bring? I don’t have time to ask the metaphysical questions. There’s work to be done, right here and right now, and I can accomplish much more by doing that work instead of asking why.

7. You Deserve It.

Not countless visits to speech, behavior, and occupational therapists. Not an endless list of medications and untold hours of arguments with insurers. Not quizzical, judgmental stares from people in Target or at the park. Not fruitless battles with an inflexible school system. You don’t deserve any of that. What you deserve is time for yourself. You work hard for your kids. You worry about them. You pray for them. You explain them to outsiders. Burn out is a constant threat. I’ve learned not to let that happen. I have to take time for myself. Katie and I have to take time for each other, too. Even if it’s for a walk around the block after bedtime or a joint trip to the grocery store, we do it. I need to keep my horizons big so that I don’t collapse in on myself. I’m convinced that my kids will thank me for it!

8. Don’t Worry about Getting It Right the First Time.

I’ve got lots of opportunities, and kids are pretty forgiving.

4 thoughts on “Lessons Learned

  1. Pingback: Come, Lonely One « autismblues

  2. My favorite quote to date: Autism – It’s not ‘broken’ its a different operating system – The more time I spend with my brother-in-law, the truer I realize this is.

  3. Pingback: Five Years with Autism | autismblues

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