Sunday, February 17, 2013

Some of What You (N)Ever Wanted to Know About Autism

One of the main reasons I decided to blog, besides trying to train myself to write each day (that's the goal, anyway), was to have a place to talk about autism. I have avoided discussing autism much lately because sometimes it's just so darn stressful! And no one wants to be around a gloomy gus all the time, right? Well, it's time I bring autism back to the front burner again. I feel like I'm doing myself and possibly others a disservice if I don't discuss this. And frankly, I need the outlet. 
  For those who don't know much about life with autism, sometimes it can be a lot like living on an island with very few inhabitants. You can see the main land, and you see the people there. Yes, there is a way of getting across, but there is also an invisible barrier keeping you from getting across. Don't get me wrong, I love my son dearly. I always have, always will. It's the autism I have a problem with because while people may understand autism when you have a young child, most people have a harder time wrapping their minds around the fact that autism is not a disability that goes away when you hit a magic age.  For most if not all children diagnosed with autism, it's something that is still there when they become an adult. That's what I have: a young adult son with moderate to severe autism. 
  He has very little speech. Most words he does say is echolalia, or parroting what he has heard before. You have to listen fairly carefully most times to understand what he says, because to him it's like learning a foreign language. Personally, i think he has a slight hearing problem, but diagnosing that is difficult. He has this habit of figuring out the pattern of the test and then tuning outTranslation in J-ese: I heard the beep the first 5 times, I get it, leave me alone.
  Typically, with words he knows, part of the word is left out, but he gets his point across. When he's hungry he says "Eee! (eat!) or "Foo" (food.) If that doesn't get your attention enough, he signs "eat" as well. Rather sharply. 
  Age doesn't stop the melt downs. Not even close. If he is too tired, too hungry, too anxious, or he just plain is bothered by something we can't figure out, he can melt down. Yes, sometimes it does get violent, as in he can hurt himself or use his teeth on others. The big trick is for his Dad and me not to get over excited and exacerbate the situation. If you're around J and he is agitated, stay calm. Don't stare, it only frustrates him and me more. This is also not the time to ask questions. Move back a bit. Use a normal tone of voice and please do not give advice at this time because it will not go well. 
   Most of the time in public, Dad is with him and can get him to a quieter place fairly easily. He seems to know how to get J to calm down a lot better than I can most times. One big thing to remember: The melt downs don't happen every day. Are they predictable? Not really, but they are more likely to happen if he's off his schedule, it's been a few hours since he last ate, or he's in pain. A melt down he had this morning was caused because his schedule was not followed. We tend to arrive at worship after morning bible class has ended. His normal routine is to go into the younger class room and play with the bead toy, and maybe the top, then he goes into the auditorium to sit with Dad and me. On the way out, he stops at the class room one more time to play with the bead toy again. This morning he missed his chance to go in first thing because we showed up at church in the midst of bible study. He was apparently highly offended that we would not allow him in that room. 
   Yes, he absolutely could use a hair cut and a beard trim. The trick is actually letting anyone near enough to do anything with his hair. He has sensitivities that drive him crazy. He does not like people washing or cutting his hair, either with scissors or a razor. Dad is allowed to cut his hair, but it takes quite a bit to actually get it done. It's about like trying to put make up on Tigger. He may actually let you do it, he's just not going to stand still long enough to get the job done. 
   He likes locking doors. That is one way he feels safe in this world. It's something he automatically does and it's not going away so we work with it. Only two doors he leaves alone; the church door and the car's front passenger side door. All other doors are fair game. When someone wants in, all you have to do is say J, unlock the door please, and he will. Most of the time. If you see him stop near a door, it's because he wants to be sure that it will close. It's just part of what makes J unique.
   He has a zest for life. Yes, he's quiet and rarely looks people in the eye unless he knows and trusts you. Even then he may not always give eye contact. But in his element he giggles, shrieks, laughs. He gives hugs sometimes. He is noisy, but he enjoys his life. 
   The things I've discussed about J is and is not unique to a child or adult with autism. If you've seen one person with autism, you've seen one person with autism. There are so many varying degrees of the disorder, so many quirks and issues that can be part of it. Some may talk your ear off about baseball, chess, drawing, whatever catches their attention. Some may have to line up everything, some you would never know they are on the spectrum unless someone told you, others are so tightly locked inside their own world they cannot be reached. Yet. There is always hope though.  
  All these things I mention about J and autism in general barely scratch the surface. There is so much more to J and to the others with it. Autism is not a disease, and it isn't catching, although there seems to be more and more diagnosed each day. When I first started learning about autism, the numbers were about 1 in 180. Now, it's about 1 in 100 children diagnosed on some part of the spectrum. More boys than girls are affected. 
  What can you do? Learn more about autism. Ask questions, I do not mind in the least. It's staring and disdain and fear that upset me. J is a human being, not a monster. Talk to J when you encounter him. Ask him how he's doing. Sometimes he may smile. Other questions you may ask him will likely be answered by me or the Hubby. Like the rest of us, J is still learning. Give him a chance.            

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