Autism: The Diagnosis

“Boys develop slower than girls. He’s fine.”

“My kid didn’t talk until they were three. You’re overreacting.”

“It’s probably a phase. Don’t worry so much!”

“He’s just not an ‘on-demand’ kind of kid.”

These were all things I heard from other mamas, friends and family members when I started to suspect that there were something not-quite-right with my little guy. He was just over a year old when he started talking. He said “hi”, “bye” and “cat” with ease. But around 13 months, he started walking and stopped talking. I’ve read (and heard from our pediatrician) that it’s normal for some kiddos to stop doing one thing while they focus on doing something else, but when he didn’t pick up the words again after he mastered walking, it was a red flag for me.

There were other things, too. He didn’t respond to his name consistently or really at all (“All kids do this…it doesn’t mean anything!”). He didn’t point to things and didn’t have great eye contact. He didn’t do things we asked him to do, like get his sippy cup or bring us a book (“But he’s not an on-demand type of kid” said a family friend). Even though everyone was telling me he was fine, my mama gut was telling me otherwise.

B’s loss of language along with some odd behaviors (reading books all.the.time, licking windows, obsessive button pushing) made us question if there was something we should be concerned about.

At our 15 month well baby visit in April of 2012, I brought up my concerns to our pediatrician and surprisingly, he took my fears seriously. I assumed he would brush them off like everyone else had, but he suggested we call a Developmental Pediatrician and Early Intervention. For those who don’t know, Early Intervention is a support system for children with developmental disabilities and delays and their families.

My first two phone calls were almost a bust!

Early Intervention: “Well….you’re a first time mom right? It sounds like your son is fine, just a little behind. We get parents calling all the time thinking there is something wrong with their kid. It would be different if your doctor told you to call a developmental pediatrician.”

Me: “That’s the next phone call I’m making ma’am.”

Early Intervention: “Oh…in that case, I’ll set you up with a case worker.”

When I called the developmental pediatrician, I was dismayed to hear that there was a waiting list over seven months long for an appointment. We were, however, put on a cancellation list and fortunate enough to get an appointment only a month later.

From there, things moved pretty fast. At the developmental pediatrician’s office, the doctor interviewed us and played a few “games” with B (a puzzle, asking him to follow directions with some toys, etc) and quickly diagnosed him with PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified), which is on the autism spectrum. The doctor said he had significant delays in speech, social reciprocity and play.

Many kids on the spectrum suffer from significant sleep problems.

Our minds were spinning. My sweet, little, smart first-born wasn’t “normal.” It might as well have been a death sentence in my mind those first few days. My thoughts immediately skipped years ahead to him being an adult and not having the future I imagined for him. Would he ever get married, have children, live on his own, hold down a job in the real world? I was assuming the worst.

Even though our journey through the crazy world of autism was only beginning, I was thankful that, above all else, I trusted my gut and talked to my child’s doctor. As a mama, you KNOW if there is something that is not quite right with your child. Yes, all children develop in their own way. Yes, all children meet milestones at different times. Yes, you should relax and enjoy your babies. But if you have a feeling that something is not right… Do.Not.Wait. Get it checked out right away. Now looking back, there were many other signs that we “missed” - things that make sense with the diagnosis that we just thought were quirks or typical toddler behaviors. We were LUCKY that B was only 16 months when he was diagnosed and was able to receive crucial help as young as he did.

Stay tuned for the next big part of B’s story – Receiving Services.

By MaryEllen M.

Mary Ellen lives in upstate New York with her hubby Chris and her two little men Brody (born December 2010) and Kieran (born March 2013). She teaches in an elementary school and loves being a working mom! In her spare time, she likes to be crafy, take pictures, cut coupons, cook and watch crappy reality TV and reruns of Law and Order SVU. She is so grateful for the love and support of her family, friends, and of course, her PB Mamas. You can find more blog posts by Mary Ellen in the "Real Life" and "Real Reviews" categories.

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2 Responses to Autism: The Diagnosis

  1. Thanks for writing about this Mary Ellen. And B is so lucky to have such a great mama.

  2. Thanks Mary Ellen…. I look up to you and admire your strength.

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