Tuesday, April 12, 2011

"The Autism That I Was Not Aware Of" by Guest Blogger, Christy


It was one year ago this month that our son AJ had his very first evaluation.  He was 2 1/2 and not talking much, so we were ready to try some speech therapy.  We figured we'd get the free evaluation, let the state pick up the tab for speech, and be caught up and done by the time he was 3.  No one would ever even have to know.


So, the Early Intervention team came, saw, and evaluated.  After a 30 minute break, they called me back in the room to tell me the following:

  • You have pureed sweet potatoes on your face (ummmm... thanks?  I was feeding my baby in the next room, not eating them myself, I promise?)
  • AJ's development is "scattered."  In other words, the delayed speech isn't the only problem (Uh oh).
  • AJ is showing many of the red flags for autism.  (What?)

I didn't take this news very well.  I cried for a minute, then got really angry and more or less told them they couldn't be more wrong and their evaluation was rigged.


My irrational, now embarrassing response made perfect sense to me at the time.  I was confident that I knew the signs of autism (after all, this was during Autism Awareness Month), and I was equally confident that he wasn't showing a single one of them.  That afternoon, between phone calls with reassuring friends and family members who assured me that AJ was fine, I made mental lists of the reasons why he couldn't have autism:
  • he was very bright- he already knew his colors and letters by age two!
  • he loved to cuddle- children with autism don't do that, do they?
  • he never lined up toys or spaced out for long periods of time- in fact, he spent most of his days running and scattering toys around the house like a category five hurricane.
  • he could care less about trains.  Even Thomas. 
  • I had known a couple of kids with autism and AJ was nothing like them. 

There were more reasons, but you get the point: my criteria for an autism diagnosis was based on a very limited knowledge of symptoms from the What to Expect series and TV.


Even though I was sure he didn't have autism, a few weeks later I decided to check out a website that the evaluators had recommended.  It was a set of videos from Firstsigns.org that show very young children with autism.  I watched those videos over and over again, with tears streaming down my face.  That was the day when I realized that autism wasn't the simple set of cliche symptoms that I had always thought it was.  And, more importantly, that was the day when I realized that my little boy might very well have it. 


You see, the signs of autism can be really subtle.  Especially in young children.  I thought my son was OK because he pointed, but then I realized that he only pointed at things in books and not to communicate that he wanted something.  I thought that cuddling meant he was social, but it could also just be seeking sensory input.  I thought he made awesome eye contact each night after supper, but he more often than not was looking at the ceiling fan reflection in my glasses (true story).  I thought he was fine because he played with toys, but as it turns out just spinning a helicopter propeller doesn't count.  I thought he was focused when he wouldn't look up from a toy or book, but he also was showing a lack of joint attention. 


If you've never heard of these more subtle signs and are wondering if your child has autism, stop listening to me and find a more professional opinion.  A good first step is to contact your county's Early Intervention Office if your child is younger than age three.  They were very helpful to us, even when I wasn't so eager to accept their help.  If your child is over three, you should contact your local school system for services (although truthfully they have not been as helpful as the folks at EI). Of course if you're on this website, you already know to contact TEACCH for help too!


Once we found out for sure that AJ had autism, we found more resources.  The book More than Words is the best one we've read to date (to learn more click here). It's also nice to know a few local parents of children with autism so that you can find resources in your area.  Our speech therapist introduced us to a family she used to work with.  Their son has autism and is about five years older than our son, so it's helpful to hear from someone who has been there.  Although I didn't particularly care for the local Autism Society Support Group I visited, I've found great support online.  There are so many good blogs written by parents of children with autism; it's a very supportive and even fun community that I never knew existed.


Finding out about the subtle signs of autism was a huge and scary moment for me.  But if you're in that position right now, I can assure you that it only gets better from here.  Really, it does.  Knowing what you're up against is a good thing, because it's only then that you know where to seek out the help that your child needs and deserves.  Also, if you're like me, the awful things that you fear in your head are way worse than the reality.  I for one am very grateful that autism is nothing like I thought it was.

Christy

bothsidesofthecoin1.blogspot.com

9 comments:

  1. Thank you so much, Christy! Your post was an amazing description of the emotional rollercoaster this diagnosis involves.

    Follow Christy's blog! You will love reading her and her husband's journey with their son: bothsidesofthecoin1.blogspot.com

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  2. Thanks for the guest post options, guys, and for the blog shout out. And she's good looking too! hope you guys check us out.

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  3. Hi Christy--very well said. It's so true how subtle the signs are and how easily they can be missed. From an early age I knew things were "off" with A. and his MD assumed I was overreacting and brushed it off. At 3yo I threw a fit and demanded testing--by someone else.

    Thank you for sharing your story and you guys have a great thing going here.

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  4. This is a really honest and beautiful post about a mother learning her child has autism. While any diagnosis of autism is very difficult, it is a different kind of difficult when you are not sure your child does have a disability. I can completely relate to everything you say here Christy -except that you still knew more than I did when my pediatrician finally said she wanted to have my son evaluated only a little over 5 months before his 4th birthday.

    The guidance you provide other moms just wondering or questioning whether their child might fall on our end of the spectrum is very valuable and important. This post is a good guide to seek out further information. A great place and great way to spread awareness!

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  5. @Brian - This is why we love reading your blog, you both are amazing!

    @Lizabeth - The doctors ignoring a parent's concerns is something we hear about way too often. Good for you advocating!

    @Karen - We are so glad you enjoyed this post as much as we did. Screening tools should be used on a more regular basis at doctor's offices so parents don't have a delay in identifying.

    Thank you all for sharing! We LOVE to hear from parents!

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  6. Thank you for sharing your story! It was the subtle signs that I picked up on and contacted the pediatrician about as well as our local EI for our son. We are still very early in the process and nowhere near an official diagnosis so I still have family members who are less than supportive but reading stories like yours gives me hope. I keep hearing there is nothing wrong with Colin, he's fine. I feel in my heart with his delays he will be diagnosed on the spectrum so I feel confident that we are doing the right thing. Thank you again for your story! Courtney

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  7. And thank you for sharing, Courtney! It is so hard when others are insisting nothing is wrong but your Mommy instinct is telling you otherwise.

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  8. Wow this is great. I agree, its something at the time you think your child could NEVER have it however so good you got early intervention and did what you have to which will only help your child and you to prepare for the future! We never wanted to hear our son has these issues either however its nice to know we too are not alone!

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  9. You are so right, David! Thank you so much for sharing your input because it will be so helpful to someone else as well!

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