4/15/09

April is Autism Awareness Month

And just how much do you know about it?  Here are some facts and information for you, because someday, somehow, someone you know will be affected by autism.  But first…I will share a bit of our personal story. 

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Our journey with Eli has been a long one.  He didn’t fit the typical, obvious criteria, so he didn’t get the official autism diagnosis until he was 5.  We knew something was wrong though, and we are so glad we didn’t give up searching for answers.  When we hit dead ends, we kept going.  When people told us we were overreacting or to just wait and see, we kept searching for answers, and we finally have them.  We are that statistic.  That 1 in 94 boys fact pertains to us…WE are that 1.  That 1 has a name…his name is Eli. 

Some of Eli’s “quirks” that we live with on a daily basis…
*He has sensory issues…All tags have to be cut out, and some fabrics just cannot be worn by him.

*He prefers red.  Always.  It’s getting better, but to Eli anything that is red is his.

*His bedroom door must remain closed at all times.  Even now that he is in Texas, he will ask if his door is closed. 
*  He cannot deal with any sort of change from one activity to the next.  He needs a LOT of warning and preparation.

*  He cannot tolerate certain noises that you and I consider to be “normal” noises, such as traffic, the metro, car horns, etc. 

*He is afraid of getting his face wet; baths are…frustrating

*He is fearful that Chase is going to get lost, and he is always worrying about him

* Eye contact is minimal at best, and frankly is rare.  He won’t look at cameras for pictures or at people during a conversation.  He is most comfortable when he is left alone, and has a hard time maintaining any level of attention one on one or in a group. 

*But he is very bright…he loves school and loves learning.  And he CAN learn very quickly, it just takes a bit more work to reach him where he’s at.  You can’t make these kids come to where YOU are, you have to go to them and reach them in their own world. 

And now here are some general statistics and information.  I got this from the www.autismspeaks.org website.  I encourage you to visit the site and learn the signs.  And the best advice I can give is that if you feel like something isn’t right, trust your gut.  You are your child’s ONLY advocate.  If you think something is wrong, get to the bottom of things. 

Did you know…

*Today 1 in 150 individuals is diagnosed with Autism, which makes it more common than pediatric cancer, diabetes, and AIDS combined. It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls.
*1 in every 94 boys is on the autism spectrum                               
*Autism is the fastest-growing serious developmental disability in the US

What does it mean to be “on the spectrum”?
Autism is a spectrum disorder, which means it manifests itself in many different forms. A diagnosis can range from mild to severe, and though children who have it (i.e. are on the spectrum) are likely to exhibit similar traits, they're also as individual as the colors of a rainbow, each one managing a grab bag of symptoms. While one child may rarely speak and have difficulty learning how to read and write, another can be so high-functioning he's able to attend classes in a mainstream school. Yet another child may be so sensitive to the feel of fabric that all tags must be cut off before he wears a piece of clothing, while his friend who's also autistic may not have any sensory issues at all.

What are some of the Red Flags I should look for?

If your baby shows two or more of these signs, please ask your pediatric healthcare provider for an immediate evaluation.

Impairment in Social Interaction:

  • Lack of appropriate eye gaze
  • Lack of warm, joyful expressions
  • Lack of sharing interest or enjoyment
  • Lack of response to name

Impairment in Communication:

  • Lack of showing gestures
  • Lack of coordination of nonverbal communication
  • Unusual prosody (little variation in pitch, odd intonation, irregular rhythm,
    unusual voice quality)

Repetitive Behaviors & Restricted Interests:

  • Repetitive movements with objects
  • Repetitive movements or posturing of body, arms, hands, or fingers

    There is much more information at www.autismspeaks.org .  Educate yourself, because odds are someday a child will rely on you to get him/her the help they need. 

4 comments:

Baloney said...

Good for you! I'm glad you put that info up.
It's easy to think of kids as labels and statistics, but they are real people with real feelings. Their feelings happen to be masked by their disorder a lot of the time.
You are right - moms should follow their gut instinct and fight for answers. Most of us didn't get here by waiting for someone to tell us what was wrong. By the time they get around to that you are a little late in the game.

Betty said...

Thanks for making us aware! And for letting us know what Eli is like. I feel for you, but am glad you got the help needed.

Stacey said...

Thanks ladies!! Baloney - you're right. It's awful when parents wait too long because by then it's too late. I don't know about you, but the more I learn and find out about it, and know about Eli, the more I recognize symptoms and signs in other kids. It's very sad...and I don't think enough people care to educate themselves because they don't want to deal with a stigma.

Kristin said...

Thank you for sharing your story, I totally agree with your comment here about education, it's sad. Keep up the good work!