Autism Awareness Month: A Kansas City Mom's Perspective
Written by: Jenny with Cassidi Jobe (Autism Mommy, Community Advocate + Owner of 'We Rock the Spectrum Kids Gym')
April is National Autism Awareness Month. I feel like we hear the word a lot and we all have a general idea of what Autism is about. But, I wanted to take a deeper, more personal look. A mom's perspective.
One of my friends, Cassidi Jobe, and I were chatting the other day and we thought it would be cool to blog about it. Educate. Help others to understand a little better.
I'll be honest, I don't know a ton about Autism. I'm eager to learn more. What I DO know is that the families that I know, personally impacted by Autism, have challenges... but ultimately, they're living fun, fulfilled lives with a lot of love!
Cassidi is the perfect person to paint this real life picture -- she has two children (Parker, 12 and Preston, 10). Both boys are on the Autism Spectrum.
We sat down for a Q + A:
What can Autism look like?
There are little to no physical characteristics and because of that, it can be really hard to identify that a person is on the spectrum! What you'll most likely notice is the individual's behavior, body movements and different communication style. In the grocery store, you may see a child who is impulsively touching the produce or walking around the store with his hands over his ears. At your child's school you may see another child who is waving their hands back and forth (flapping). At church you may observe a child rocking in place or jumping up and down. At the playground you may notice a little one walking around making strange chirping or singing noises! These repetitive movements and sounds are referred to as 'stimming'. It can be a way for an individual on the spectrum to calm himself or herself in a stressful situation or over-stimulating environment.
Something else I want to mention is that behavioral disturbances are very common in those with Autism. So, if you see a kid in Target having a MAJOR meltdown because her mom is trying to make her try on a pair of shoes -- have compassion. There's a chance that child is having an 'Autism meltdown' due to sensory overload or maybe a change in structure or that child's routine. These meltdowns are not the same as a neuro-typical child's tantrum because they couldn't have a cookie in the check-out line.
If you're out in the community and you observe a child having an epic meltdown, what's your advice?
Offer words of encouragement or help. Something like, 'you've got this, mom!' or even just a friendly smile. If the child has pulled things off the shelf or made some type of mess -- give mom a hand and help pick up the items so she can tend to her child sooner. If those types of responses aren't your personality... just move along. We all know the old adage, 'if you can't say something nice, don't say anything at all'.
Do not offer 'advice' like, 'your child needs more discipline or a spanking'. Nearly every parent has had a child have a tantrum in public. None of us enjoy the experience! It's stressful. The difference for an Autism parent is that we can't avoid the way our child's brain responds to sensory stimuli from the environment. Lights may seem brighter. Sounds may seem louder. Smells may be stronger.
The bottom line is that if you see something in public that you don't understand, avoid making assumptions and ridiculing others.
One message you really want to get out there is what Autism is NOT. Talk more about that.
Autism is NOT a condition caused by lack of parenting or discipline. It is not contagious or something that your child can 'catch' at school or a play group from a child who is on the spectrum. This may seem obvious to some... but you have no idea how often I get this question!
How many children have Autism?
Autism affects 1 in 68 children, which includes 1 in 42 boys and 1 in 180 girls. It's estimated that 3.5 million Americans live with an Autism Spectrum Disorder. Those are HUGE numbers. Understanding the prevalence of this condition is so important because it puts into perspective how common it is and helps us all understand how likely we and our children are to encounter a person on the spectrum.
Someone you know has a child who has been diagnosed. What do you do?
The natural human response when loss is perceived is to say 'I'm sorry' -- and the general assumption is that you've experienced a loss if your child has been diagnosed with a condition that will impact their development. So, it IS OK to say 'I'm sorry'. But, make sure you follow up with something else like 'how do you feel about that'? Giving that person the opportunity to talk about their emotions is much better than drenching them with sympathy and condolences.
On the flip side, what NOT to do...
Do NOT say 'well, you know, God only gives special needs to children of strong people'. This statement is a gross assumption and is not helpful in any form or fashion. I can assure you that no parent who has just received a diagnosis for their child walks out of a doctor's office saying to themselves, 'SWEET! God thinks I'm super strong'! Instead, they're scared, sad, relieved, confused, and a whole host of other emotions -- NONE of which include feeling strong.
You meet someone new and they mention they have a child who has Autism. What do you say? What do you NOT say?
Ask about the child -- what they're interested in, their likes, their dislikes. As a parent, we all want to gush about our amazing little humans! That doesn't change just because a child has developmental differences. Let 'em tell you about their child, just like you would tell someone you just met about yours.
Don't say things like, 'well, he doesn't look Autistic' or 'what is her special talent'? Not all children with Autism have 'Rain Man' type talents. In fact, only 10% of those with an Autism diagnosis will demonstrate skills that would classify them as a Savant (that's the type of Autism that Dustin Hoffman portrayed in the movie).
What if your child asks you about Autism?
It's likely that your child will hear that term at some point! The best kid friendly response that I have come up with is, 'Autism is a word that people use to describe the way that some kid's minds and bodies work'.
Acknowledge the different behaviors your kids may see. Acknowledge that what they are seeing is different. Different can be scary for children, but when your child sees you respond with kindness and understanding to those with differences, hopefully they'll do the same.
Don't encourage isolating the child. 'Mommy, why does Joey jump up and down and wave his hands like that?' -- 'I don't know, Sally, just stay away from him and go play over there'. This may sound ridiculous, but you have NO IDEA how common this response is by parents. I would like to believe it stems from the parent's lack of knowledge on the subject. But, unless you're striving to be the next 'Mean Girl', encouraging exclusion is never the right answer.
What's the biggest tip you'd like to offer?
Educate yourself. The numbers aren't going down! The chance of encountering a person or family that is impacted by Autism is very high! Ask questions and read articles, that way when your child has questions, you can give them answers, remove stigma and raise a compassionate and understanding human being.
Cassidi has always been passionate about her boys feeling like part of their community and she has remained determined to make that happen, despite their Autism diagnoses. After years of failed attempts to find a community facility where her children could play without being ridiculed for their differences and behaviors, she came across the international organization, 'We Rock the Spectrum Kids Gym' -- dedicated to providing inclusive play environments to children of all ability levels. Cassidi believes offering such a place promotes understanding and acceptance of those who have developmental differences.
I'd just like to throw in that we held my son's 4th birthday party at We Rock a few months ago and it is AWESOME! Truly a place for all kids to swing, climb, zip line, jump and have FUN. Because regardless of a diagnosis, kids deserve a place to play where they feel comfortable, safe and can have fun! That's what it's all about.
One final thought.
Whenever my kids make mention of someone who looks, acts or sounds different, I always reply the same way. 'Yep. Everyone is different. Don't ya think the world would be a pretty boring place if we were all exactly the same?' They always react the same way. With a nod of agreement.
I love what Cassidi said above -- different can be scary for children, but when your child sees you respond with kindness and understanding to those with differences, hopefully they'll do the same.
She's so right.