Welcome to part 3 of my mini-series on the “10 Signs of High Functioning Autism that I missed.”
So many of these signs of High Functioning Autism (as opposed to what I “thought” Autism looked like [see intro in Part 2] mirror common childhood challenges. But, in children who are on the spectrum, these challenge are greatly intensified and often cause great stress for the child and family.
I have a vivid memory of when my twins were around 3 years old. We had been playing at an indoor playground, one of our favorite spots, and…it was time to go.
My boys lost their minds.
I can still see myself, walking calmly out of Kids Cove, my chin in the air, with one screaming, thrashing child under each arm.
I may have looked calm but my heart was racing and my face was beet red. The “time to go” tantrum was a common occurrence. But even more than that, whenever we moved to new activity, visited a store or restaurant, etc, my boys acted like it was the first time they had ever been confronted with that situation (NEW STORE???? MUST RUN! MUST TOUCH ALL THE THINGS!!! GO NUTS!!!).
To cope, I started verbally narrating our entire day (First, we are going to eat breakfast; then we will get dressed and you can watch ONE show…), and I gave the same speech before we entered any and every store or restaurant (How do we act, boys? Good. What does it mean to be “good”? Don’t run, don’t wrestle, listen to Mommy….etc). If we had to go to Target and Walgreens in the same 30 minutes, I put them through the same catechism each time.
Most importantly, I gave them warnings before we were going to leave at 15 min, 5 minutes, 1 minute, then TIME TO GO!
It still wasn’t perfect but the transitions got easier over time. However, I still use all these techniques on a regular basis for my 8.5 year old twins (as well as my 3 year old).
Before we even knew he was on the spectrum, I knew that Benji really struggled with transitions. He has a hard time understanding time and he struggles with short term memory (long term memory is a steel trap!) so giving him repeated reminders helps the transition to be less of a surprise (he HATES surprises).
I do know that routine is extremely important for my son, as well as other Autistic people, and the expectation of transitions by giving him updates and warnings of impending change helps to reduce his daily anxiety.
I have a love/hate relationship with Benji’s obsessions. Well, “hate” is a strong word. I get bored with his favorite topics after few months but I’m learning to delight in what he delights in.
Fixation on certain topics, interests, or ideas is often a hallmark of people on the spectrum. Often, these “obsessions” can lead the person to become an expert on certain topics and, if guided properly, it can even help in getting a job one day.
Benji’s first honest-to-goodness obsession was Thomas the Train. He had trouble saying “Thomas” so he called the little blue engine “Tallah!” He would wander around the house, hollering repeatedly, “Ohhhh Tallah!!”
It was like a call to prayer…for trains.
He couldn’t get enough Thomas. He knew the names of every engine. He wanted every train set. For several years the only toys we bought him for Christmas and his birthday were trains and tracks. In every package there is an advertisement paper with pictures of every train ever made. He would carry around the paper until it was falling apart, telling us 50 times a day which trains he owned and which trains he wanted.
He could practically recite “Misty Island Rescue”–and we didn’t even own that movie. We borrowed it from the library a handful of times.
The intense Thomas obsession faded around age 5 but we still have a huge bin of trains and, if I get them out on special occasions, Benji still eagerly plays with them. He also still loves to watch Thomas on Netflix, much to the chagrin of Micah, who rolls his eyes.
I love that Benji still loves Thomas.
When he was little, I didn’t see his love of Thomas as a sign of Autism. I thought Autistic children were obsessed with things like counting toothpicks or lining up cars.
However, Thomas was literally the ONLY toy Benji played with and, for a long time, the only thing he talked about. It was more than just his “favorite toy.” It was a genuine obsession, and a strong fixation on a singular topic or interest is often a sign of Autism.
Are fixations bad? Not necessarily. I look forward to seeing how Benji’s “obsessions” develop and I am going to do my best to guide his chosen interests toward future career choices.
These days, I do get a little tired of hearing about Pokemon but my son’s interests are a gateway into his heart and mind and I am trying to do my best to enter into his world and learn to love (or at least be interested in) what he loves. Plus, did you know? Pokemon is saving my Sundays.
10. Not trusting my instincts
At the beginning of this series I posed the question concerning my son’s late Autism diagnosis, “How could we have not known!? Why couldn’t I see?”
There were so many signs that I missed because I didn’t understand or didn’t even know about certain Autistic tendencies.
However, I think one of the biggest and most important signs I missed was in myself: I didn’t trust my maternal instinct that something wasn’t quite right.
I had my doubts. I remember feeling perplexed. I researched and read articles about milestones and early childhood development. I perpetually wondered, “Is it…Autism?” But continually dismissed my concerns.
I tried to pass the buck to others:
If my pediatrician says something, then I’ll pursue it.
If the preschool teachers (and later, his elementary school teachers) say something, then I know I’m not just making things up.
After all, they are professionals. They know what to look for.
But, the truth is, I am his mother. My God-given instincts were telling me something but I was too afraid to listen.
I felt foolish.
I felt confused.
I wanted answers but I didn’t know where to start.
I mostly felt like a defunct mother because, truly, it couldn’t be him. It had to be me. If I was only a better mother then I would be able to meet his needs, help him communicate, soothe his tantrums, and discipline him more effectively.
I just need to be better.
But instead of trying to muscle my way towards perfection, I needed to let go of the preconceptions I held about special needs kids and my expectations of raising my son, and acknowledge my own heart-knowledge: Your son needs help. You need support. Start somewhere. Ask for help.
When I stop ignoring my gut, we stopped spinning our wheels and started moving forward.
It was the most important sign, the first piece of the puzzle that I put in place.
Are you looking for encouragement in the middle of your own unpredictable journey right now? I’d love for you to check out my book, Unexpected: Learning to love your unpredictable story. It’s available here on Amazon in print and Kindle form.
What was the first sign for you?
What piece of advice would you give to parents who are just starting their journey to help meet their child’s special needs?
Share your story below!
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