What Autism Looks Like to Me

Autism in Our House

Today is April 2nd, which is Autism Awareness Day. Many people are wearing blue to spread awareness. Many people are boycotting blue, and instead sharing memes or graphics in support of autism. There seem to be varying sides on this matter, and I don’t have a side. Awareness is more than wearing blue, however if wearing blue and sharing information helps more people understand then I’m all in. There’s a difference in awareness and acceptance. I want to bring acceptance of behaviors and quirks. I want people to stop wanting to heal my autistic children, and accept that they are the way God made them. I do not want to heal them. I want them to be the best versions of themselves, and I want them to be accepted for who they are.

Zachary

Zachary is my 9 year old. He will be 10 in July, and I’ve known since he was about 3 that there was something different about him. Not wrong, not bad, not something I want to heal, but different. To this day he is different. He is officially diagnosed as High Functioning Autistic, Oppositional Defiant Disorder, Attention Deficit Hyperactivity Disorder, and Sensory Processing Disorder. If they were still using Asperger’s, that is what his official diagnosis would be. He is very high functioning but yet struggles in so many ways. He is so smart, but still needs help. He doesn’t quite get social cues or jokes. He takes everything literally. He fixates on subjects. Right now his big fixation is huskies. Every single book he gets from the library has to be about Siberian Huskies.

Yesterday we had a busy day and when we were in Walmart around 630, Zachary started hand flapping. He was so overstimulated he needed to stim so he did. I let him do it, and he calmed down. However, to those looking in at us, he looked like an out of control child who should behave. He needs to spin. He needs to hand flap. He often stops playing with others so he can go off alone and retreat into solitude. He doesn’t do it to be rude. He does it because he needs to recharge. He doesn’t remember how to not interrupt. When he wants to say something he will say it. He needs reminders to not smell me all of the time. As he has gotten older, he has learned good coping mechanisms and can handle life better, but sometimes it creeps up and hits him hard.

Christopher

We have gotten Chris evaluated for autism, and the psychologist in MS said that he has Asperger’s as well. He had a total loss of speech between the ages of 3-5, just like Zachary. Chris started speech when he was 2.5 because of a slight articulation delay. Between the ages of 3-5 he declined so rapidly that he was at a 3 year old speech level at 5 years old, despite being in speech therapy twice a week. Nobody could tell me why. The speech therapists just transferred the blame to someone else, but I know something flipped in his brain. He is quiet, very shy. He prefers to play by himself most of the time. He fixates on things as well. Right now he loves rocks. He has a huge rock collection and is constantly getting new boxes to store them in. Before the rocks, it was making ice. I would find ice in random containers in my freezer.

Chris has other medical things, diagnoses, whatever you want to call them, going on as well so it’s hard to tell if this is happening because of that or if it is genetic. While running errands yesterday, Chris shut down and went mute. He was overwhelmed, and overstimulated and needed quiet time to recharge.

Caleb

Caleb is my 4 year old. He is the most obvious when it comes to being autistic. He doesn’t make eye contact. He doesn’t pay attention. He acts like he’s in his own world. He pitches these fits that last for a long time and he can’t bring himself out of them. He screams, he cries. It’s more than just a normal 4 year old fit. His speech isn’t progressing. He definitely has regressed between 3 and 4 like Zachary and Chris. In MS, we had him evaluated and they, too, said autism and severe social delay. He was on an 18 month – 2 year old level at almost 3.

Right now Caleb is the hardest one to handle when he melts down. He screams and cries. He wanders off. He rolls on the floor. He hides. It’s terrifying when he wanders off because sometimes he doesn’t answer when you call him. We lost him 18 months ago. We were at a Halloween fest and he wandered off. Luckily a police officer found him and we got him back, but this is the reality of Caleb. If he’s not touching me, he will wander off.

 

Acceptance and Awareness

I have 3 kids who are on the spectrum. 3/5. Those are high odds. The reality is that in my case, it is genetic. My brother has Asperger’s, but it was misdiagnosed in the 90s. I wonder if I, myself, am on the spectrum just from what I’ve learned about it with my children. I do not want to argue the fact that some people think vaccines cause autism. I don’t want to argue the fact that some people think it can be cured. What I do know is that regardless of how this came about, my kids are all different and special, and I want the world to accept them for who they are. I do not want people to tell me how to fix it. You can’t fix genetics, but why would I want to fix something that makes them them? Why would I want them to think that they aren’t perfect the way they are? God made them this way, and I can give them tools to make their lives easier.  Just like I’m shy and introverted, their personalities are their personalities. I want my children to be accepted for who they are, every single one of them. I don’t want them to ever think I wish they would be different.

The saying goes “When you know one autistic person, you know only one autistic person.” Autism looks different in every person, even in families. Now that awareness is being spread, let’s start working on acceptance.

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