A Side Note - Autism Awareness

Autism Awareness

by Judy Avenson

As a parent of a child on the Autism Spectrum, I have a special interest in helping others learn more 
about it as well as creating awareness of the signs of Autism.


How Common is Autism?

In 2016, the Centers for Disease Control’s Autism and Developmental Disabilities Monitoring (ADDM) reported that approximately 1 in 68 children in the United States has been identified with an Autism Spectrum Disorder (ASD). This rate remains the same as in 2014, which is the first time it has not risen.  (From Autism Science Foundation)

A more important question for parents than how common Autism is, is what should I watch for in my own children?  I'm including several links for recognizing the signs of Autism.  

"As a child’s gestures are developing between 9 and 16 months, you should also see other social communication milestones—the use of eye gaze and facial expressions to share attention and emotion, an increasing rate of communicating with sounds and gestures, a wider variety of actions in play, and an emerging ability to comprehend the meaning of spoken words. If these early social communication milestones are not solidly in place, it is likely that language will be delayed. It is important to keep in mind that delays in many social communication milestones may indicate risk for autism or other developmental delays. By detecting small gaps in early social communication skills, you can get extra help to support your child’s development before significant delays are evident."

"Most parents and doctors know the early motor milestones—that children should be sitting up at around 6 months, crawling at 9 months, and walking at 12 months. However, few parents or professionals know the key early social communication milestones. These milestones offer a critical window into the well-being of infants and toddlers and are the earliest signs of healthy development and school readiness. Catching communication and language delays early can prevent potential problems later with behavior, learning, reading, and social interaction. What will families get from the Social Communication Growth Charts? The Social Communication Growth Charts are for families of infants and toddlers or anyone interested in young children to learn about social communication development from 9 to 24 months of age. There are two functions in the Growth Charts—you can explore the milestones and learn how to support your child’s development or you can chart your child’s development."


Center for Disease Control: Learn the Signs, Act Early Campaign.

The Autism Science Foundation is a partner in the CDC’s “Learn the Signs, Act Early Campaign”. 
The following early indicators of autism were developed by the experts in this program.

Get a PDF of these early warning signs. Also, read more about the importance of early diagnosis.

There are many other resources to check, but if you have a concern start with your pediatrician or doctor.  If you're like me, and feel that you still have concerns after the doctor visit, then follow up with specialists.  I contacted our AEA, Grant Wood, for a free screening, which is what set our journey in motion.

Unity Point had a blog called "The Real Mom's of Eastern Iowa,", for which I was a guest blogger.  I'm including an excerpt from a post which talks about our  experience.

I’m hoping that our experience might be helpful to other parents who are concerned about their child but aren’t sure what to do.  I had a sense that something “wasn’t right” with Ellie’s development.  She was slightly delayed when it came to crawling and walking, but the most noticeable was her lack of communication.  I recently read back in a journal I’ve kept that just before her 2nd birthday, Ellie wasn’t interacting with us, not in a way that happens normally with “neurotypical” kids – she didn’t call her big sister by name, she didn’t call me Mom.  She used no pronouns at all.  What she was very successful at was repeating or “scripting” phrases from her favorite shows.  She loved Dora and most of what she said pertained to Dora – it was as though she was in a parallel universe parroting phrases from Dora.  She also had an amazing line up of children’s songs she knew the lyrics to.  Since she was verbal and was speaking, I kept thinking that her ability to actually talk to us would develop.
 
Since Ellie has a sister, Chloe who is 2.5 years older, we had a good idea of what we should expect for typical developmental milestones.  Even then, it was a chance to learn how differently all kids grow and to accept each child as an individual.  We thought maybe Ellie was just going to take her time; that she was in no rush.  And that worked for us for a while.  At her 2-year wellness check-up I mentioned her lack of language to her doctor and that I had some concerns; he listened to me and checked to see if she was making eye contact, how she responded to him, etc.  At that point though, she was small enough that she could just be working on her own schedule so we agreed we’d just see how she progressed.  

Shortly after that I realized Ellie really never made any attempt to tell us anything.  She never asked for more milk, or made requests of any kind.  I’ve had people question me about that, wondering how we knew what she wanted or what to give her.  When I get those questions I feel like a monumental failure.  It’s as if people are unwittingly saying, “Excuse me, but how dense were you not to figure out that something wasn’t right?”  I trust no one who asked was implying that at all, it’s my own sense of failure.  If you’re a parent of a small child it’s something you don’t truly think about – whether they specifically ask for something.  But you know what they want, and generally when they want it even when they don’t ask.  I remember getting up from supper to fill her empty sippy cup with milk and I asked her if she wanted more.  I was the one who was trained – an empty cup at that stage of supper meant she needed more milk.  I had a flash of realization at that moment – I had NO expectation of her answering me. 

And that’s when all the small pieces started to fall into place; that’s when I started to think about all of those little things that I unconsciously had listed as “worries.”  Another trait Ellie had was being in her own bubble, for lack of a better way to describe it.  On car rides it was like she was alone on a train; she made no attempt to interact with us even after loud and prolonged prompting on our part.  It was like she had checked out.  She took no notice of anything going on outside the car.

Going anywhere in public with Ellie could be exhausting.  If she was confined in a cart at a store we usually had a better experience.  When we picked Chloe up from preschool I marveled at how the other toddlers would stand patiently next to their parent waiting for their sibling to be dismissed.  Not Ellie – she couldn’t stand still.  I would position myself at the end of a little-used hallway so that she could run and hop along the length of it without disrupting everyone else.  The other parents at our preschool were the nicest imaginable.  No one ever commented on her behavior except to say she was full of energy, and no one, me included, had any idea she was Autistic.  But when your child is the boisterous one, the one laughing and shrieking, jumping and running, you tend to feel a bit sheepish.  I wondered to myself why she couldn’t be still, why she couldn’t behave like the other kids.  Was I too lax?  You can imagine that attending church wasn't an option for us.  There was no possibility of Ellie being able to sit through an hour-long Mass (we’re Catholic); we would have been taking her out more of the time than we’d have been in, not to mention the constant disruption to everyone else.

When I put these things together and thought of them as more than just isolated quirks I realized it was time to at least see if there was more going on than what we knew.  I contacted Grant Wood AEA and checked into an evaluation; it was time to find out how we could help our daughter succeed.  Deciding to do more than wait was pivotal and it’s probably the best decision I have ever made. 

If you have concerns about your child’s development start with your doctor or pediatrician, but don’t be afraid to contact your local AEA.  They were able to start us on the right path.  Our local Grant Wood AEA can be reached at 399-6700 or check their website  http://www.aea10.k12.ia.us/parstu.html

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