How did we know?

I had a few parents reach out asking us how did we know to get help and what are the red flags associated with autism, which has lead me to this post. I am not a pediatrician.  I am far from an autism expert.  I would ALWAYS suggest following your gut and asking professionals.  However, maybe this post can help one parent see something they may otherwise overlooked.  Keep in mind: no two individuals with autism are the same. I’m only sharing MY experience. 

Channing has always been a happy, wild, expressive little boy.  When we first questioned if everything was “normal” most people seemed shocked.  Honestly, my husband didn’t even believe me.  I could just feel it – we have several friends with babies all within a few months of Channing’s age and he just always seemed different.  And I don’t mean different in a bad way, he was our little wild man (we nicknamed him the dragon because he could totally burn you down; going from 0-60 so fast your head would spin).  We just thought he had a BIG personality… and he still does.  A lot of “features” of children with autism can be perfectly normal and age appropriate.  What I’ve learned is that it’s the combination of all of them together that makes an ASD diagnosis possible. 

Channing seemed to be developing normal, always excelling in gross motor skills and topping the charts in height and weight the first 9 months.  He had started waving and saying “bub-bub” for bubbles.  He would point up to the sky when you’d ask him “where’s the moon?”. It was so exciting to watch him learn and discover the world… THIS is what I had always been waiting for as a parent! 

Over the next few months we waited for more words and gestures.  He stopped pointing up to the sky; we actually couldn’t get him to point at all really (he still doesn’t point, we’re working on that!).  I was told that sometimes babies can regress and likely he would be pointing again in a few months.  RED FLAG.  He went straight from crawling to running and was so coordinated we figured he was just developing motor skills and the cognitive would come.  But I couldn’t wait.  My gut was telling me I needed to be seeing more from him.  I always felt like people were saying “he’s so young, don’t put pressure on him, it’ll happen.”  But it wasn’t happening.  I had a note in my phone where I would write down all of his milestones and slowly I had nothing to write down.  I hated seeing people’s monthly posts talking about their kids’ new skills, likes/dislikes, it made me so sad.  I felt like I was living in a twilight zone and watching my child fade away from me. 

I asked our daycare director if she would watch him in his classroom for a week and let me know if she thought anything seemed off.  He passed her “test” and she said she thought he seemed just fine; he was just a wild boy who didn’t want to sit for story time (or ever).  I wasn’t convinced.  I creepily watched the other kids and interacted with them at pick up and drop off; there was no other child that acted the way my little boy did… at least not that I was able to see.  RED FLAG.

We switched pediatricians after several back-to-back ear infections and when we arrived at the new peds office she gave me an 18-month development milestone survey to fill out.  I was sick to my stomach.  I was answering “never” to almost all of the questions and hanging on to every inch of hope when I’d reach a question that I could answer “sometimes” to.  This is not right.  Something is not right.  RED FLAG.  She sent us for tubes so we could first check-off hearing.  Okay yes, that makes sense, we thought:  He’s been hearing poorly because of the ear infections and so he is delayed.  He will catch right up.  After waiting a few months post-tubes, he still was not talking and he seemed to be responding to his name less and less.  I would make crazy faces and do the silliest things to get his attention or try to get him to mimic me, nothing.  RED FLAG.  He was still so happy but he seemed to be laughing at nothing in particular… something in his world sure was funny to him and we were happy he was happy.  He barely noticed when new people walked into the room and seemed to always be off on his own in ALL of the photos our daycare would send us of his day.  RED FLAG.  They’d say “he’s great at independent play,” no one said anything about something being off… but being his mom, I knew.

If something seems like a red flag, take it as a red flag.  Everyone will try and tell you “everything is fine” but if you feel like it isn’t… do something.  You know your child better than anyone.  What’s the worst that can happen?  Yes, Channing’s diagnosis was hard to hear but only because no one ever wants to hear something is “wrong” with their child.  I wanted to be the one that was wrong.  I wanted the doctors to say: “lady, you are a crazy over-protective mama and you need to chill out… he’s just fine and is developing perfectly normally.”  Instead, they told us we were a step ahead by getting him diagnosed early.  We were going to get the help we needed and by doing so we were giving him the best shot at developing “normally.”  I hate even writing that sentence because I don’t want to say my son is not normal… what the heck is “normal” anyway?  But, you get the idea.

Was I partly that crazy lady I was afraid of being?  Oh, heck yes.  Did I call every day from May until August trying to get an earlier appointment with the Developmental Pediatrician? Yep.  Did I take videos of my son to show the pediatrician and write down all of his likes and dislikes and learned and lost skills?  You betcha.  I wanted no more delays.  I felt like I was already behind.  The thing is… the diagnosis is a process and took a total of 10 months from tubes to the first day of ABA.  And that is actually extremely fast.  I quit my full-time job, which I loved, because I was not able to be home with Channing as much as I would like.  I know not everyone is able to do that, and I’m so thankful and blessed that I was.   Which is why I’m writing this.  If you have any doubt, start asking questions.  Talk to your pediatrician, talk to me.  There is an early warning signs link here that may help as well.

So, how did we know?  We knew because we got help.  We knew because we did what everyone tells you not to do: we compared.  Now, before someone yells at me… I’m not telling you to compare.  “Comparison is the thief of joy” BUT we needed to compare so that we could understand.  Maybe there is a better word for it, because I know everyone says you shouldn’t compare… so don’t hate me for saying that.  We are new at this whole parenting thing.  Comparing helped us understand what was “off” and what we needed to address so that our son could have the best life he could possibly live.

Where are we now? Channing is in ABA therapy 30 hours a week as well as speech therapy.  We love his therapists and so does he.  We are currently not able to attend preschool due to the extensive therapy hours.  I will talk more about therapy and that process in a later post if anyone is interested. 

A few links you may find helpful:

• Autism Signs and Symptoms
• Autism Screening via Autism Speaks
• Does my child have autism?