Part 2: 10 Signs of High Functioning Autism that I missed

This is Part 2 of my three part series about the “10 signs of High Functioning Autism that I missed” in my son. If you missed part 1, where I discuss sensory issues and motor skills, click here!

I’ve been thinking a lot lately about why I missed these signs with my son. The reality is, I had a version of “Autism” in my head, what I thought Autism looked like. I thought that children with Autism didn’t develop speech (no words by 2-3 years old), didn’t interact with the world around them, exhibited stimming behaviors such as rocking or hand-flapping, or they developed normally for a time and then lost speech and relationship skills suddenly, usually between the ages of 2-3.

All of these things do happen and can be seen in children with Autism, but not always. Benji didn’t exhibit any of these issues or qualities.

His signs were much more subtle, but they were still there. Looking back now, I can see them.

4. Communication Issues

Benji was never diagnosed with a speech delay but he probably should have been.  However, both my twins were slower to speak but I reasoned that this was due to their premature birth (36 weeks) and the fact that they were boys.

However, the older Benji got, the more I realized that his normal speech was not “normal. I wrote more about this topic in this post.

What I didn’t know then was that many children with Autism have trouble communicating, sometimes in their actual speech, but even more so in expressing their thoughts, emotions, and even sequencing their thoughts into patterns that make sense to the listener. My son struggles in these areas due to his Autism.

Speech therapy is an important intervention that Benji now receives.

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There are so many ways to communicate with your child. Look at this smile! What a happy Benji (3 years old).

One “right” thing I did when my boys were babies and toddlers was introduce them to sign language. They were obsessed with Signing Time DVDs and probably learned 100-150 signs. Signing really helped us with the communication issues I wasn’t even fully aware of at the time.

5. Won’t respond to verbal instructions

A few weeks ago, I unearthed a 30 second video of when my twins were 2. In the video I asked Micah, “What’s your name?”
“Micah!” he chirped happily.
“How old are you?”
“Two!”
I then turned the camera to Benji and asked him “What’s your name, little dude?”
He didn’t respond or look at me. I asked him over and over again, “What’s your name, little dude?”
Nothing. I laughed in the video and I remembered how I felt perplexed because I knew he could tell me his name. He had done it before.
I then asked, “How old are you?” and Benji suddenly looked at the camera and said, “Two!”
I remember being pleased, and asked him again, “What’s your name? Can you tell me your name?”
But again, he didn’t respond.

At the time, I though Benji was being silly or stubborn because he had answered these questions before. I just wanted to get his cute little voice on video.

But as I look back at this memory, his selective communication, his lack of understanding of one question vs. another, and his detachment from me and my efforts to communicate with him, I now see as evidence of his Autism.

Even now, at times, Benji struggles to understand directions, questions, and instructions. I often have to word things differently and encourage others to do the same, such as when we were at the eye doctor last week and the attendant asked him to “read the letters.” He was silent and I knew he didn’t understand (how could I “read” the letters? Those letters don’t make words!). So I asked, “Benji, can you name each letter on the screen?”

Struggling to interpret and then respond appropriately to the verbal world is a battle for many people on the spectrum.

6. Not “checking in” while playing

A few months ago, this video (What Autism looks like in toddlers) popped up on my facebook feed. One part that really suck out to me was when babies, playing near their mothers, would look back at their moms to “check in” as if to say, “Mommy? Do you see me? Are you still there?”
The mom would smile at her baby and the baby would smile back and go back to playing.

This is normal, typical development for babies and toddlers. They gain independence through crawling and walking but they still want to be connected to Mom and share experiences with her. “Checking in” through a glance, coo, or laugh during play is a way to share a personal connection.

As a baby and toddler, Benji never did this. We had a connection and a relationship but,  as I said yesterday, most of his awake time was spent wrestling with his brother or running at parks. When he was playing he was in his own “world” and he didn’t try to share his experiences with me or “check in” during his play time.

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Benji may not have “checked in” with me when he was a baby but he has special relationships with his two little brothers. Their adoration for each other is mutual.

When I first saw this video, I wondered,  Is this “checking in” thing for real? I decided to observe my baby, Eli, who was about 9 months old at the time.

I watched him crawl away.
Hmm! Blocks! These look fun! He started to chew on one.
My phone rang and I answered it.
Eli turned toward the noise. Then he put the block to his own ear, smiling and babbling.
He glanced up and caught  my eye, and said “Dada!”
See, mommy? Look! I talk to daddy on the phone just like you.

And there it was: “Checking in” (plus pretending. See #7).

It brings me so much joy to see my baby interact with me and the world around him. But realizing that I didn’t have these precious moments with Benji hurts sometimes.

7. Not Pretending

Many people with Autism are concrete, black and white thinkers. Pretending, imagining,  or taking the perspective of another person are often very difficult concepts to grasp.

For example, in a recent therapy session, Benji’s therapist had to reword all her questions to him because they began with “Pretend you are–”
“I don’t do that,” he bluntly interrupted. “I don’t pretend.”

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This was the only time my boys wore these adorable pirate costumes my mom made for them. Playing dress up (pretending) was difficult at age 3.

And it’s true. He doesn’t pretend. A yellow block is always a yellow block. It will never be a banana or cheese for a stuffed mouse to nibble.

Pretending or imaginative play is part of normal development for neurotypical babies and toddlers. I see this type of development in my younger two sons (3 and 15 months) as they pretend that a string is a snake or as they feed themselves “peas” from a green Lego.

But when Benji was a baby and toddler, he didn’t play pretend. Honestly, he didn’t play with toys much at all, except for certain types (more on that tomorrow).

If he does make up a story or play out an imaginative game, the game or story is directly related to something he has seen in a movie or read in a book. His brain builds upon what he already knows; creating a new world, game, or perspective simply out of his imagination doesn’t fit in his black and white paradigm.

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My boys love Wild Kratts, an animal TV show. I made these vests when they were 5 and they loved reenacting their favorite shows.

Did you know that the word “Autism” is taken from the Greek word “autos” meaning “self”?
People with Autism typically relate to the world as it fits into the paradigm of what they already know through personal experience (which can look very different from the experiences of a neurotypical person, especially if an Autistic person has sensory integration challenges).
In order to understand another person’s perspective, to understand different situations, feelings, or even cultures, you have to employ the imagination.

This is why personal relationships are often a struggle for people on the spectrum because taking the perspectives of other people requires the use of imagination.

Fortunately for Benji, he relates very well to stories and especially movies. By relating to the characters in his favorite books or movies, I can often help him see the perspectives and feeling of other people, or even help him understand himself more fully too.

All of the signs I discussed today were very subtle. They were there but I didn’t know what I was looking for…

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Stay posted for Part 3 of this series later this week!

Miss Part 1? Click here!

Want to learn more about our story? Start here!

Is your child on the Autism Spectrum?
What were the signs you saw?
What were the signs you missed?
Share your story below!

 

I hope that our story can bring hope, healing, and happiness to you.
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Did this post encourage you or would it inspire someone you know?
If so, please share! Thank you!:)

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11 Comments

  1. Your descriptions in this post on the signs of Autism are just amazing! I can’t tell you how much I wish I knew then of what I know now. I hope more people, especially young parents, read this post!

    • Thank you! I really strive to write with clarity and description to help educate and encourage others. Your compliment means a lot!

  2. Joy

    I knew very early on that there was something going on with my daughter. She would ear cover at just 9 months old and couldnt have people in the house because she would meltdown. She struggled to communicate verbally and was scripting most conversations and using echolalia. We also got religiously into signing time dvds and we used sign language to get her basic needs met. She started reading by age 2 and is an amazing reader. At 3 the neurologist said it was PDD-NOS which falls on the spectrum. Lots of therapies each day and now she is in kindergarten and is an amazingly intelligent little girl. She is now using pretend play and is very social ( all be it awkwardly but none the less very social). She still struggles to relate to others emotionally and maintain continous play ( when she’s done interacting with a friend ,she’s done. It doesn’t matter wether the other person still wants to play) She has come so far in such a short amount of time and I know it’s due to all the therapies and help we got her. I use to ask her ped when she was baby if something could be wrong and he use to hush me with its just her personality. I knew in my heart from her very early age that something was off but I listened to the dr. That still bothers me that I didn’t trust myself more and push harder for her. It wasn’t until I left that Dr’s office for a new dr that we were sent to be evaluated and finally recieved services.
    Thank you for our story and I hope and pray that it can help some mother out there who is doubting her gut feeling about her child so that they too can recieve beneficial services.

    • Joy, thank you so much for sharing your story! I am so glad that you got your daughter into early therapy. It really makes a difference. I fight against the guilt of not trusting my gut and getting my son help and support sooner. I hope that by sharing our story it will help parents to love, understand, and get support for their kids early.
      Thanks for reading and commenting! God bless you!

  3. kristineotr

    This is a wonderful article and I thank you for sharing your perspective. I hope you are gentle with yourself, so many people “miss” signs and a lot of people are trained professionals. I work with clients whose signs went undetected or were told they “didn’t need therapy” only to see situations persist or get more complicated as the child ages. You are a good mom and it is wonderful that you did so much “right” and are now helping others in need.

  4. Gretchen Harman

    These are signs I wish I had known to look for. I always knew my son was less social than some other boys his age, but he is so high functioning that I just took it as part of his personality. It wasn’t until he was 18 and graduated from high school that he asked to be tested and we found out he is on the spectrum. Honestly, he was able to get along well enough, up until he needed to figure out what he was going to do after high school. He loves art and writing, but only in a very narrow area, and his math is awful. I knew traditional college wasn’t right for him, though I still hope art school is in his future. He has very specific goals and huge dreams, but he just doesn’t know how to get there. Unfortunately, it is very difficult to get help as an adult (he is now 21). Most of the “system” assumes a person would be diagnosed in school, where there are professionals to help guide parents in signing their children up for help. When we did initiate the process to get him in the system for support, they messed up the paperwork because they assumed he was a minor, and that kicked all the paperwork out. We’d have had to start over with doctor’s visits and evaluations, etc. I haven’t been convinced yet it would be worth our time and effort to try again.

    Do I wish he were diagnosed earlier? Yes, because he would have had easier access to help, but also no, because we raised him like a “normal” child, and I think we would have challenged him much less if we had known. I am certainly glad I know now, because it is so much better understanding his “quirks” as an adult. He is also relieved to know why he is different. He is lonely, though.

    • Gretchen, thank you so much for sharing your story. I think that unwrapping the truth is a life long process and it always brings light. Sometimes it brings sorrow and a tinge of regret too (I’ve felt like that by “waiting” until my son was 8 to pursue his diagnosis) but learning more about him has opened up my eyes and heart to him new and beautiful ways.
      I hope your son finds community and friends as he continues to grow into adulthood.
      Thank you for reading and time the time to comment.

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