WHY is Autism Awareness month important and HOW can we help others be AWARE?
Occasionally, we are invited to write an article or do an interview for Autism Awareness month since we’ve written a book on the subject. Each time, we are reminded that the “general audience” is important and we must be engaging for not only those with autism in their families, but also families and people who know little to nothing about autism. NOTE: We don’t, but some parents with kids on the autism spectrum refer to those who know little to nothing as… “The Ignorant.” Teehee.
If you ever get asked to do something like this, we’d like to offer up what we do as a pattern for you to follow.
Here is the dialogue we’ve found that does the best job of:
- Educating the public on what autism is and how many people are affected and what they can do.
- Making people laugh, pull on their heart-strings and maybe even feel uncomfortable about how they treat others.
- Illustrating that those affected by autism are everywhere – even in plain sight and can’t often be identified by sight.
- Creating an emotional connection with parents of those affected by autism
- Creating an emotional connection with those who know others affected by autism
- Creating an emotional connection with parents who know nothing about autism and may judge others. It may even illicit an “angry” reaction to how the situation was handled – not a bad emotion to illicit, huh?
April is Autism Awareness month and to focus on that for a few moments. We have with us today, Kyle Jetsel who is the father of 6, with 2 sons affected by autism. Kyle has written a book about some of the wacky and zany things that happen in their family and how families can THRIVE in the CHAOS.
Q: So, Kyle. What is autism?
A: Autism is a general term for a group of complex brain development disorders. These disorders are characterized by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.
Q: How many people are affected by autism?
A: The most recent statistics from the CDC (Centers for Disease Control and Prevention) estimates that about 1 in 68 children has been identified with autism spectrum disorder (ASD).
Q: What is the Autism Spectrum?
A: This means that there is a wide degree of ways it affects people. There’s a spectrum. Every child on the autism spectrum has unique abilities, symptoms, and challenges. The spectrum goes all the way from being completely non-verbal possibly in a wheel-chair to highly functioning individuals who have difficulty with social cues.
Q: How or why should we be more aware?
A: That’s a great question. If it’ okay I’d like to share an experience with you. (Then in my own words I will tell this story – most likely a shortened version of it)
A few years back, my wife had a “girl’s night in” where she invites her very best friends over for a night of food, fun and silly conversation. My job, when this happens, is to “GET OUT” and take all the kids with me for at least 2 hours – and I’m happy to help out in any way I can. I love my wife.
Usually, I take all 6 of my kids out for the evening and we have much fun, but this time my two oldest boys (who are big helps) had prior plans that they were excited about and I decided to go it alone with the 4 youngest.
I knew – in advance – that taking my 2 sons affected by autism, (ages 11 and 8 at the time) and my almost 3 year-old twins, Jack and Chloe, out for the evening – all by myself – would be a bit difficult – so I decided that the local Burger King play land might offer a safe location where they could have fun. But more importantly to me, it seemed it would be a location where I could keep them somewhat corralled – as ALL of them… are runners.
I could not have imagined the reception I would experience when we all walked in to the PACKED Burger King play land.
As we got our food and squeezed in to a corner booth – the only one available – the kids flew off in to the playground and seemed to be doing great – UNTIL – a loud screeching WEEEE-OOOO, WEEEE-OOOO pierced the air. The sound was deafening. I popped up out of the booth as all my kids made their way towards me with their hands covering each of their little ears. I was a bit confused until Erik said, “IT WASN’T ME!” which usually is an indication that he is guilty of something. And he WAS guilty – as I learned as I heard other kids telling their parents, “That kid did it” as they pointed at Erik. Apparently, he had pressed the bar on an external door and triggered the alarm.
Needless to say, the other parents in the room glared in my direction in an attempt to silently voice their displeasure with my parenting skills. I was unaffected by their glares and had a talk with one of the boys explaining what had happened and that he should not do it again. When he responded with, “IT WASN’T ME!” I knew he simply did not understand and was unable to make the connection. I kept a closer eye on him from then on.
I was, however, a little MORE affected by their glares after the alarm was triggered again. WEEEE-OOOO, WEEEE-OOOO, WEEEE-OOOO, WEEEE-OOOO! This time it took a few more seconds for the staff to reset the door. My older son was nowhere NEAR the door but I immediately knew what had happened when, this time, my younger on the spectrum came running my way claiming, “IT WASN’T ME!” I now had the talk with him with the same result.
Interestingly enough, I wasn’t mad at my sons on the spectrum, but a little surprised at the judgmental way we were now being viewed by all the parents. But I also noticed there were fewer people now in the play land to judge us as a loud screeching alarm – WEEEE-OOOO, WEEEE-OOOO – seemed to be a room clearer. I decided, right then and there, to do what was best for my kids and ignore the other – seemingly angry or annoyed – parents.
I started to smile as I watched them play and continue to have fun. Can you guess what happened next?
That’s right – with my back now turned and ignoring everyone in the play land…it happened again… WEEEE-OOOO, WEEEE-OOOO! I turned and smiled at my boys as they ran to me again. But as they approached and assured me with “IT WASN’T ME” instead of telling them they should not do it again I whispered “I Love You” in their ears and told him to go have fun. After which I thoroughly went back to enjoying my Whopper. Then again… WEEEE-OOOO, WEEEE-OOOO! This time, the other heard, “I Love You” in his ear and I sent him back in to the fray. Then again… WEEEE-OOOO, WEEEE-OOOO! Then again… WEEEE-OOOO, WEEEE-OOOO! Each time followed by an “I Love You” in the ears of my boys affected by autism.
After the sixth or seventh alarm had sounded – much to the dismay of the Burger King staff – ALL of the people in BK play land were gone… EXCEPT one family with two boys remained – and the Dad looked mad. As he approached I expected to be chastised for my behavior – and my parenting skills – but was shocked when his angry countenance turned to a big smile.
He said, “Do your two boys have special needs of some kind?”
After I said yes, he said, “I KNEW IT. That was awesome! I LOVED THE WAY YOU HANDLED THOSE OTHER PARENTS!” He then went on to explain that he had a sister with a son with autism that would not take him anywhere because of how others treated them when he’d “act different.” He’d seen for himself how his sister would cower, get embarrassed and even leave because of the way others had stared at them.
Then he said, “But you stood your ground and I can tell your kids feel accepted and loved. That was awesome! Would you mind talking to my sister and sharing with her your secrets?” We talked a few more minutes as our kids played. All in all – it turned out to be a great evening.
Q: So you’re saying two things. First, parents of kids affected by autism should do what’s best for their kids despite what others think or do.
A: That’s right. We have a responsibility to serve these children to the best of our ability. We can’t be concerned with how we’re treated by others or the world. We have to be concerned with what’s best for them. And we do that by being at OUR very best FOR them. We have to fix ourselves so that we can serve them properly. That’s probably true for all kids, huh?
Q: And for others, they must be AWARE that there are kids out there with disabilities everywhere – maybe even a kid that looks typical may have issues. We shouldn’t judge – especially since we have no idea what others may be dealing with.
A: Listen, by nature, people are judgmental. I get it. And I’m not suggesting we can change the way people think. But, maybe, just maybe, that lady whose 10 year-old kid is affected by autism HAS to take him to the grocery store even though she KNOWS he may have a meltdown and throw a fit and kick and scream as he flails on the floor. Maybe she is a FANTASTIC parent for even TRYING that… but struggles in connecting with him due to his diagnosis.
Q: So, CAN we help?
A: Maybe, maybe not. I can tell you that passing judgment doesn’t help. Staring in disgust doesn’t help. Just be aware that things aren’t always what you may think. They may be dealing with something so hard that you can’t even imagine. I mean, recent research has concluded that mothers of those affected by autism experience chronic stress comparable to COMBAT SOLDIERS. That’s hard stuff, right there.
Q: So, what can we do?
A: It’s simple. If you feel compelled… ASK. One time my son was screaming at me in Wal-Mart and I was just letting him “get it out” because that’s what was best for him and he needed to vent. Well, it caused quite a stir as you can imagine because he was about 13 at the time and you don’t see that often – I mean, a typical looking 13 year-old yelling at his father incoherently and his father just standing there listening. So, after a few minutes he calmed down and as I reached over to hug him and tell him it was okay, and a sweet little older lady stopped and said – to ME – “are you okay?”
It meant the WORLD to me that somebody (ANYBODY) cared enough to ask. I’ll never forget her face.
Q: Yeah, but that sounds a bit scary. What if we DON’T feel compared to do anything?
A: That’s okay too. You don’t have to do anything. Just understand and be AWARE that for every difficult experience we have to work through, we receive as many or more WONDERFUL experiences. Contrary to what many think, these kids are not a burden; they are a blessing. They are our blessings and we wouldn’t want them any other way.
Again, the idea here is to bring awareness in a way that is engaging and compelling to ALL.
Hopefully, this helps in some way.
The Jetsel family