Friday, August 10, 2012

The Great “Disconnect”

After watching a video the other day I had a "light bulb" moment. A 17 year old girl was discussing what it is like growing up and living with Aspergers. She is AMAZING and really helped me put something I have been struggling with for years into perspective. I have always had a hard time getting across to others exactly how Josh’s restricted and repetitive behaviors have impacted his daily life. I’m always hearing “but he looks fine” or “I don’t see anything wrong”. Let me start by saying he IS fine and there really ISN’T anything wrong with how he chooses to handle his daily routine. Hopefully by the end of this blog you will have a better understanding of what repetitive behaviors are and how Josh uses his to disconnect from our world while entering his own.
Restricted and repetitive behaviors and interests are among the three main symptoms of autism. They include repetitive movements with objects, repeated body movements such as rocking and hand-flapping, ritualistic behavior, sensory sensitivities and circumscribed interests (unusual preoccupations that are intensely focused). 
Josh has many restricted and repetitive behaviors. As he gets older he is definitely learning how to manage them better. He also knows how to control them, to a point, when out in public. This is when I hear from others how he “looks” fine, “I don’t see anything unusual”, or my favorite “he’s just shy”. I’m also always hearing from others that they were unaware because “he seems so social”. Josh can be extremely social but if you take a closer look you’ll notice he gets along much better with younger kids or family members. I have a theory on that… Josh tends to be intensely focused on things that are of interest to kids about two or three years younger than he is, probably because that is where he is on an emotional maturity level. The younger kids LOVE Josh, if given the choice to play with his eleven year old peers or an eight year old Lego enthusiast he’ll choose the eight year old almost every time. It’s not that his peers leave him out, because they don’t, he just simply feels more comfortable around the younger group. When he is with this younger group I don’t think he feels the need to disconnect from our world so much. It’s much easier for him to pull them into his world. My biggest concern is that as Josh gets older and his repetitive behaviors and interests remain the same it will become increasingly more difficult for him to find friends to hang around with. I’m hoping he will continue to surprise us all…
Now at home it’s a whole different story!!! At home when he is around all of his FAVORITE things he can easily slip into what is called an autistic disconnect. The anxieties of the world have taken its toll and now he needs to decompress. While on the computer playing Minecraft or completely engulfing himself in the latest video game craze you will always find Josh jumping and flapping his arms. I swear I will find him on the ceiling some day. He becomes completely obsessed and enters another world. Don’t bother trying to talk to him, he can’t hear you. Don’t question why he sniffs his hands constantly while playing, he just does. Don’t think he will eat if he gets hungry or drink if he gets thirsty, he won’t. Don’t think he’s trying to be rude or disrespectful, he’s not.
While in his world he is constantly trying to process what he is doing. When he gets “stuck” on something of interest and starts to obsess about it get out of the way and clear the hall. Here comes Josh running laps around the living room and then pacing up and down the hall. Up the hall… Down the hall… Up the hall… Down the hall…  Don’t bother talking to him; he can’t here you he’s “thinking”. Another way Josh processes information is through a repetitive behavior called echolalia. Echolalia is repeating or ”echoing” what another person has said. Children who are echolalic imitate what they have heard someone say in everyday life, lines they’ve listened to from a book, lyrics to a song, or a script from a show or movie. If you ask Josh a question listen closely, he’s more than likely to repeat that question before trying to answer it.
Now it’s time to leave his sanctuary and head out into “our world”. This can be a very difficult task. It’s not easy for him to leave the comforts of home. Welcome now to my world of rituals! Everything must be lined up and/or put in its correct spot. Don’t touch the Legos, it’s his newest masterpiece in progress. Computer door shut, bedroom door shut and one more check to see the Xbox and games are put away correctly. Now repeat. Now repeat. Now repeat, get the idea. Oh and I have to pinky swear, several times, that I won’t go into his room, touch his toys or go on to his Minecraft account. This is done EVERY DAY before leaving the house. And you thought you had a difficult morning routine…
Now he is out “re-connected” to our world. Playing with the kids on the playground while trying to manage his behaviors. If you pay attention these behaviors do pop up in public. He is learning how to manage them however, under extreme anxiety it becomes difficult. He may just need to take a snack break, go for a walk, do arm pushups (deep pressure really helps) or he’ll ask to go to the bathroom. This is a good time to warn all middle school teachers, beware Josh will ask to use the bathroom a lot. No he doesn’t have to really go it’s his way of saying I need to take a break and go for a walk. Just remember, even though Josh is learning how to manage in public now and then it is still necessary for him to disconnect into his world in order to reconnect into ours.

Thanks for giving me a moment of your time,
Ann
 



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