I always thought if you had a kid with autism, you would know.  Growing up, I met plenty of kids with autism.  My brother had cerebral palsy, and he played on a Challenger Little League team specifically for kids with physical and intellectual challenges.  Most of his teammates had down syndrome or autism.  What I didn’t realize then is that autism is a spectrum, and there are varying degrees of how it presents. We would need years to discover we had two undiagnosed kids with autism.

What Life Was Like with Two Undiagnosed Kids with Autism

I never really thought our kids had any major issues.  When we moved to Arizona nearly five years ago, we had what we thought were three healthy children.  Life was good, but often stressful.

Honestly, a lot of the time, we just thought we were bad parents because our kids weren’t like other kids and they didn’t react to things the same way that other kids did.  Our life was decidedly different than others with “typical” kids.

Sensory Processing Disorder

Years ago, we sought help because two of our kids had sensory processing issues, but we didn’t even know then that those issues were sensory related.  One kid had oral seeking behavior—this kid would put everything and anything in their mouth, seeking oral sensation.  We have a picture of this child after the child chewed so hard on a pen that blue ink exploded everywhere, both inside and outside the mouth.

Both kids loved to hold out their arms and spin themselves in circles, over and over again all day long.

Kids with Undiagnosed Autism
Photo by Scott Higdon on Unsplash

The other child had (and still has) an aversion to the feel of clothes.  Everything is too tight or too itchy.  There is a limited (very limited) line of clothes this child will wear.

We got help for the sensory issues, but it wasn’t cheap, and insurance only covered a small portion, so the therapy was for less than a year.  Never did the therapist who did the evaluation and worked with the kids mention that they might have autism.

Schedules

Our kids were on a strict schedule.  If we deviated from the schedule, we would have a miserable time, all five of us.  My husband and I because the kids would begin acting out and our kids because not being on schedule caused them anxiety.  I think friends and family might have thought that we were a little too strict with the schedule, not realizing what would happen if we veered off it.

Field Trips

When we started homeschooling, I liked to take the kids on field trips, and on the weekends, my husband and I wanted to go out and do things and see places like “typical” families do.  But every time, getting started was miserable because the kids would meltdown, complain, and fight.  Because a field trip wasn’t “routine,” they had high anxiety.  We could never figure out why our kids were like this, but it made getting started on most outings miserable.  Often, the kids did have fun once we got there.

Emotional Control

Undiagnosed Kids with Autsim
Our kids had very little emotional control.  If the smallest thing upset them, they would often have a tantrum.  We don’t believe in spanking and had watched our fair share of Super Nanny back in the day, but the “naughty corner” did nothing for our kids.  Their behavior didn’t change.  The slightest injustice or setback could cause a tantrum.  I thought they were just stubborn and strong-willed, but honestly, no punishment, whether it was time in the naughty corner or extra chores, quelled their behavior.

As they got older and their tantrums became more severe and debilitating to our family, we sought help.  That’s when we discovered, over the course of about four months, that one of our children had high functioning autism (what would have been classified as Asperger’s before that diagnosis was discontinued).

But even with this knowledge, it still took us over 1.5 years to realize one other child might also have high functioning autism and get the diagnosis.

Final Thoughts

In some ways, getting the diagnosis was a relief because we realized that we weren’t bad parents.  When you watch other families and see the things they do and the strategies that work for “typical” kids and they don’t work for you or your family, you do start to question if the problem is you, personally.  Now, after the diagnosis, I realize that our issues weren’t because of us and our parenting style, they were because of autism, which went undiagnosed for far too long in our family.

Read More

2016: The Year of the Autism Diagnosis

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