What's your autism story?
Happy Autism Awareness and Acceptance Day! Here's our story!
He was our first, we were young, early 20s, we didn't know which way was up! Still in college and barely making ends meet, but we were thrilled! He was a perfect little bundle! Came a month early but healthy and strong.
First sign: didn't nurse. Didn't have a strong suck reflex. Needed lots of movement to fall asleep and didn't sleep well for many years.
But he met his milestones, babbled, laughed, interacted, walked at 8 1/2 months, had a small handful of words by 1. And he was SMART.
He started fixating on letters by 8 months old. Would carry them around, usually in pairs (two letters that fell next to each other in the alphabet). Started to become VERY upset if we disrupted his letter lines.
Around 15 months old, he stopped using the words he had. He only “talked” in letters and numbers. He whined and cried when he needed something. He would use our hands as “tools” to get his needs met. He would take my hand and put it on a closed box if he wanted it open. He did not point. He stopped making interactive eye contact.
When he was 22 months old, kid #2 was at our doorstep. By then, little dude had completely lost any functional words, limited engagement, lots of tantrums, often for unknown reasons, and a tremendous increase in an obsession with letters and numbers.
At our 2 year check up, Pediatrician listened to our concerns but wasn't concerned. “Boys talk later.” But I had a gut feeling. She decided to send him for an evaluation to “rule out autism,” I think to appease me. Well, howdy-doody to you. A mama's instinct is usually right! Three independent evaluations all came back with autism.
That threw us into the world of special education, speech, OT, and ABA.
About that time, at age 2, the letters turned into reading. We remember the very first word he read. Dad had him in the bath with his foam letters. Dad put three letters up on the side of the tub and said the sounds D… O… G…. Dog. C…U…P…. Cup. C…A…T…. Cat. Something clicked! The boy realized that these letters made sounds, and then sounds together made words, and we were off to the races!
By the time he was 2 1/2, he was a fairly fluent beginning reader, I'd say probably a 1st or 2nd grade level. BUT he didn't understand or use most of what he was reading! I mean, he would READ the words (out loud), but he didn't know what they meant or know they could be used to communicate!
In fact, by 2 1/2, he still only had a couple of functional words. ABA was making a huge difference in his behavior, but we really wanted to harness this ability to read to build up his communication skills!
So that's exactly what we did. He LOVED reading; books, flashcards, anything. He was so motivated by it. I labeled the house with flashcards! “Couch” on the couch. “Table” on the table. “Bed” on the bed. Every time he saw the word, he'd read it, and I would immediately say, “Yes! that's the couch!” Over and over and over! It's how he learned his first new words in ages!
I started carrying a little whiteboard or paper with me everywhere. I wrote down for him things he saw, what we were doing, expectations for behavior! He soaked it up!
At 3, he started special education preschool. We continued with home ABA and speech and OT. He was a busy little guy! He continued to read more and better and started doing more numbers/math way too old for him. Social and behavior continued to be challenging, but he was able to communicate more. Far behind his peers, but he could get his needs known and have very simple conversations. He became more interactive and affectionate with family.
This was the road for a number of years…. ridiculously high math and reading skills, lower communication skills, challenging social and behavior skills. ABA was probably the biggest positive impact for him, helping him understand the world, make sense of it, giving him skills he needed to access his environment, make friends, be independent. But it was a hard road, for sure.
Back to when he was young, when he was about 3 1/2, I remember walking down the school hallway with him. There were some 4th graders sitting in the hallway working on multiplication facts. He immediately sat down with them and started doing them! I had no idea he even knew what multiplication was!
That was the next time I saw how his high skills could help him in the other areas of development! We had to advocate for school to allow him to participate in “higher” math classes. When he was being stimulated and in an area of interest (math for him), his behavior was better, he was more interactive and social, and he was happier!
At 3, after some gentle nudging, school agreed to let him go to Kindergarten for part of the day. As he was successful there and mastered the content easily, they moved him up to 1st grade for math. By the time he was in Kindergarten, they had him going to 3rd grade for math.
This pattern continued for a number of years, school allowing him to participate in higher math courses (usually bumping 2 grades each year) as long as he could handle it (socially AND academically).
During this time, we continued to work on deficits in therapy and through his IEP. He continued to make progress. Biggest struggles were inflexible thinking, handling change, expressing frustration and dysregulation, self-control and self-regulation. Speech started testing “normal” around 3rd grade, but he continued (to this day!) to have dysfluencies, sort of stammering over words and phrases, sounding a bit pedantic, but he was doing fine.
By the end of grade school, he no longer qualified for an IEP and was switched to a 504 plan, just making sure they accommodated his unique needs like having more time for tests or projects or a quiet place to work if he needed it.
He never really had real “friends,” but he interacted and was mostly appropriate, but didn't really seek out friends that much. And they didn't seek him.
As for academics, he finished all high school math options by 8th grade if I remember right, including through Calculus 2! The local community college allowed him to start taking their courses early, I think around age 14.
High school was similar, did well academically, mostly kept to himself, was certainly “quirky” but he was content. He did Running Start, graduated high school with his AA.
After high school, he served a mission for our church. During this time, anxiety and the rigorous expectations of “adulting” became more prominent. He required medication and self-regulating behavior to get through his days.
After his mission, he went to university. He used some accommodations there like getting some extra time if he asked for it (usually due to anxiety or executive functioning delays). He graduated in less than 4 years with a degree in Statistics.
Today, he is 26, lives independently as a software engineer. He is…. kind, gentle, smart, quirky, loving, sarcastic, and autistic. His sister calls him “a funny kid.” He does adulting with minimal support or help from us. He has found his own way. He eats crap, he games too much, he doesn't get out socially that much, and so what?!? He's happy, he does go to church, and he lives an honest and loyal life.
Today is World Autism Day. Autism encompasses all walks of life, all genders, colors, belief systems, interests, and skill sets.
The one consistent in all my autistic friends I've known over the years…. they are au-some! They are each on their own journey; each path and each destination will be different. But each journey is beautiful in its own way.
Enjoy this silly vid of him around 18 months old. Please share a pic of your loved one!