What Autism means for us – Part 2
As I have previously mentioned in part 1, my son has been severely affected by Autism. With Autism being a spectrum disorder, the saying “when you’ve met one child with Autism, you have met one child with Autism” holds such an important truth to remember. Even when children fall into a similar range on the spectrum there are still so many things that can be different in their specific journey and the struggles they and their family face as well as the joys that they are able to celebrate.
Because my son can not yet tell his story on his own, I am here to be his voice for him. To help him be heard and seen as best as I can. I am here to share his heart, his passions, his struggles, his triumphs. I am not only his window into understanding the world around him, but also his portal for reaching out to others and helping them understand him.
As promised, today’s post will be focusing in on what severe Autism looks like for us. What our daily reality looks like over here and the struggles David has to face, adapt to, and/or fight against for his own progress and future. Of course, David doesn’t face this alone, and for as long as I am living on this earth I am determined to make sure he never has to.
The first reality we face is the one most noticeable to those outside our world, but also sadly the most misunderstood. His behaviors. David struggles with things like frequent self injury, sensory overloads, meltdowns, and a wide range of various stims (self-stimulating behavior generally marked by repetitive movements, sounds, or words). The severity of these things varies with the surrounding situations and other variables at the time. And some of them (self-injury and stimming/stims) are not always started due to something bad happening.
For instance, sometimes David will start stimming simply because he’s bored or maybe because he has too much pent up energy inside him and he doesn’t know how else to get it out. He also might slam his fist into his head (self-injury) because he is getting frusterated or flustered in his attempts to communicate, or simply because his favorite character on a show just did something he liked. He doesn’t understand he’s hurting himself. To him, it’s just something he does and I am not even sure he completely realizes he’s doing it half the time as he generally seems startled and confused when I try to intervene to protect him against injury.
As for the sensory overloads, one of the leading causes of Autistic meltdowns, the best way to explain what that is like is to show you. This video does a pretty good job of that in my opinion so I will let it be David’s voice for this part.
Our second reality is social interactions. David struggles to understand even the simplest of social cues (like an out stretched hand inviting him to come, or another child frowning and continuing to step back because David is getting too close and is invading personal space). He also doesn’t understand most humor and will start laughing if a previously memorized situation (sometimes known as social scripting) seems to be playing out with the required action being to laugh. This has led to some believable social interaction just as easily as it has led to some inappropriate and somewhat embarrasing situations.
To him, our social world is just one big confusing mess so his way of handling that (if he doesn’t just completely disengage instead and ignore everyone) is to treat it all like he’s in a theatrical play. Watching those he trusts closely, memorizing the things they say and do and sometimes the situations surrounding it, and then trying to apply it later in the form of little more than script reciting when faced with his own social situation. Every once in a while, when the situation is familiar and the people calm, he will come out with something original, but mostly he relies on his scripting and repeating (also known as echolalia) to get him through the day.
He’s actually pretty good at it too which has led to many a dual situation of frusteration and humor when you suddenly “break script” and start “ad libbing”. The scene is no longer playing out like he’s memorized before and it leaves him not knowing what to say or do. This is when we most often get some favorite phrases from Thomas the Train or occasionally other loved movies. He apparently thinks Thomas is a social genius or something. lol 😉 This is also a good time to break out the sign language to help break through his communication barriers, if someone hasn’t started that for him already.
Then there is his lack of danger awareness and the accompanying issues with applying simple relative thinking skills so he can learn from his mistakes instead of repeat them over and over. A good example of this would be when he slams his finger in a cabinet door or falls down from his latest climbing adventure. He might start crying, and understand he needs to come to me to get help, but as soon as the tears stop flowing (and in some cases before they even have a chance to dry on his cheeks) he’s right back where he started and repeating the exact same behavior that got him hurt the first time. And the second, and the third… I am usually his only barrier between him repeatedly getting hurt and him getting out of a situation long enough to put his attention elsewhere. And it usually involves me having to resort to physical removal and/or restraint in order to achieve that.
A good one to mention after noting his issues with dangerous stunts and behavior, is to point out his always present, sometimes intense, issues with bolting and wandering off. Something that has led to a few police searches, a bolted down front door, personal investments in specialized harnesses built to handle his size and strength, and many a moment where I thought my heart was going to leap from my chest due to the panic and fear of seeing him suddenly gone inspite of all this. This is also the main reason I started our journey to get David a service dog.
Another big one, and the one that is most painful for me to acknowledge and look at squarely in the face, are his coginitive issues. For example, just a few posts ago I told of the exciting progress of him finally learning how to use the popcorn button on the microwave to pop his own popcorn. Sadly, this skill has already been lost as he lacked the cognitive ability to store the knowledge in a way that would allow him to access it again later. He also suffers from added issues like Auditory Processing Disorder and pervasive cognitive delays that get in the way of his learning and memory skills. As a result, even though David is very smart and bright, he struggles to apply this a lot of the time outside of his own self-initated learning. One of the main reasons (out of many) that we now homeschool him.
I know this post is definitely on the longer side of things, but I hope it has helped you get to know David and his personal journey with Autism at least a little better. Thank-you for reading. : )