Wednesday, December 9, 2015

The constant drip, Perseveration

One of the ways autism elbows itself into a family’s everyday life is via perseveration. Perseveration is one of those words I had never heard before my son Tate was diagnosed with autism, almost twelve years ago. It’s a big word that encompasses a lot of things. To perseverate is to get stuck on something and to be unable to mentally shift gears. It might show up as a single word or phrase repeated over and over, or an action performed over and over. A person might wash their hands repeatedly because they are perseverating on germs. Another might quote lines from their favorite shows on television because those things seem to be running on a constant loop in their head.

Some people with autism have very narrow interests and perseverate on those few things they are interested in. It is different than someone without autism who might be zealous about a favorite topic. A person without autism might have an interest or a hobby they enjoy, but with limits. They can put that hobby away and go back to it at convenient times. A person with autism may become so consumed by the hobby that he cannot put it on a backburner. He cannot stop thinking about it or talking about it easily. It drives him.

While raising children without autism I saw some passionate interests. One of my sons absolutely loved dinosaurs and Legos when he was young. We had many books about dinosaurs and lots of Legos. However, he could put them away for periods of time and find great joy in other things as well. He enjoyed talking about dinosaurs and wanted to learn the names of different dinosaurs but he did not talk about dinosaurs for hours each day. One of my daughters was an avid lover of horses. She could have an intelligent conversation about horses but did not force that subject on all her friends daily.

This is one of the texts Tate sent out.
My son Tate’s interests do vary a little. However, when he finds something he loves he gets stuck on that something, usually for weeks, sometimes months. There is almost nothing we can do to help him focus on anything else but the current topic(s) of interest. Most of Tate’s interests are inspired by the movies he sees. Tate perseverates about movies. He has his own DVD library that is quite extensive. He memorizes the cast and much of the dialogue then uses bits of the dialogue throughout our day. Tate is passionate about movies. About two weeks ago Tate decided he was going to need a video camera so he can make some movies. He put this on his Christmas list and began texting his family members pictures of cameras, not just any cameras, but professional-looking television cameras. Keep in mind that money and the value of things is just not a concept Tate has been able to master. He wants a video camera. He “needs” a video camera. I explained that his iPad can actually do the same things a video camera can. I talked to him about all the movies he’s made in the past on the iPad and how great those are. But no matter how much I talked and reasoned, I got nowhere. 

If you do not live with a child with autism then you might be thinking, “So what? Kids “need” things all the time. You tell them, “No.” and move on.” Kids should not be spoiled, getting everything they want. Oh yes. Remember I raised five children without autism before Tate. I have said, “No. Get over it.” more times than the average mother. But telling a kid with autism that they will not be getting the thing they desire is different on a level you simply cannot comprehend until you’ve been there. The constant drip you have heard from an annoying broken faucet is not even going to touch the constant drip and the anxiety that you will witness when a child with autism “needs” something.


After a couple of weeks of knowing Tate expects a video camera for Christmas and me reminding him over and over that it was not going to happen, I led him to my closet. The constant "drip" was just more than I could continue to live with. 

Long before I walked around with an iPhone in my hand, always ready to capture video at just a second’s notice, I owned a small video camera that recorded on 9mm tapes. It hasn’t been used in at least five and a half years. I got the box off the shelf, wiped a layer of dust off, and plugged that old camera into a wall socket to charge. I found one blank tape. Tate stood next to that camera as it charged holding vigil. He beamed and thanked me for “the early Christmas present.” He assured me over and over he knew just how to operate it as he had used one at school before. The instruction manual, also in the box, is written in language that is way over Tate’s head but no matter. I have little doubt that Tate will have that camera mastered in a few days' time. His movies will probably consist of tours of our home and documentaries about the merits of wearing a hoodie. I can almost guarantee he will be taping himself typing notes and lists using the antique typewriter he has been obsessing over lately. I imagine for a time he will be content. The proverbial constant drip about needing a video camera so he can make movies has been silenced for now, his anxiety turned to joy. I’ll take joy over anxiety any old day. I will enjoy it while it lasts because there will be a new drip starting soon enough for me to deal with.

If you like this post, be sure to check out this one: Typewriters and Texts
Also be sure and take a look at Tate's still photographs at The Photos From Tate's Camera.

8 comments:

  1. I love how you manage his needs and that of your entire family. I know it can't be easy .

    ReplyDelete
  2. I almost cried, This touched the heart at what I felt growing up. I would literally "Sit with the computer" or the "VCR player" if there was downtime for what ever reason (grounded, no power, maintenance etc). I almost bet your son was memorizing the noises it makes during the "Charging" seession, that most people can't even hear. I bet the whole time he wasn't "just sitting there" he was opening up his mind to how the operations might happen, by taking the knowledge he knows about cameras and observing the buttons and respective positions according to the "hand".

    Its precisely why I believe iPad "form factor" doesn't work for him, You cannot hold an ipad still, they have no stabilizing software built-in like most analog cameras, the do! Form factor aside for a moment, I'll bet he enjoys the fact that he doesn't need to "communicate" or "coherence someone" or "find volunteers" to change stuff in the movie because he can hold the camera with one hand while he can "alter the environment with his other hand (even off camera tricks like in the movies!), lastly the "one handed form factor" cameras usually have buttons conveniently, and intuitively positioned across the five fingers of the hands and "hard buttons" are great, they are "reliable" and usually "guaranteed to work" if they don't work after the button is pressed then unlike an ipad there is a clear indication that the machine is not responding, with the ipad-touch screen there is no indication that after a button was "Depressed" it didn't respond, because a touch screen is not like normal analog reliable well though out buttons. One more thing, "You cannot place an ipad down and expect it to point horizontally with the ground, it will always "point up", a "handed" form factor camera you simple "place down" with out thinking about it and it points straight and level with no "extra tools or "balancing books in such a way that it points straight. :)

    ReplyDelete
    Replies
    1. Thanks for that perspective. I hadn't thought of these things.

      Delete
  3. Lida,
    This story had been my life also. It was if only the namrs had been changed. I always had long talkd with my son July with whatever he perserverates on and it totally helps. I will ask questions and let him volley a subject for hours, its how I got him to learn to lessen the gotta have it right now mindset for him and I got a deeper understanding of his perspective too. Julys dream job is to work for Pixar. I came to realize that it is us that do not understand their mastery of a subject. I have no doubt if any great director such as Spielberg were to just begin their careers today that they would desperately want to experience all the tools of the trade no matter how old school, to create tbe visions of genious; they all likely began with used tools and making corny home movies to hone their skills. Think of Tates movies as the precious autobiography of his mind that he wants to make and share. How lucky you are to be priveledged enough to be at its making and always give him the tools, things he asks for in order to bring the world to his command. He, like all of us, have dreams; he is just brave enough to share his.

    ReplyDelete
    Replies
    1. So many of us have similar lives. Thanks for the nice comment. I so appreciate it.

      Delete
  4. Thank you. My son is Little Larry aka(1 of the many nicknames he has tolerated by me and also answers every time) A-lish or Lish. My son is also 14, if I'm doing the math correctly Tate is also around his age. He is also a Genius, I also fit on the spectrum although I admit to behind a bit smart, am not a genius...lot, me 14 yr old is leaps and bounds ahead of me on his niche subjects yet I am also leaps and bounds ahead of him on mine. My father, late 50's is definitely autistic and also a Major Genius, a jack of all trades AND a master of them all. I wonder(his father was extremely abusive AMD psychotic, my dad was also forced to become right handed as he was a natural left and my mother had to "fight" his mother to allow me to maintain my natural left handedness) all the things my father endured while growing up my brother at 37 recently divulged a horrible (not sexual abuse although still more than terrible) experience at the hands of my grandfather while my father was present he did not a single thing to stop it, my brother was a very little boy, and it was told in confidence so that is as far as I can go w it, but imagine it was my dad shut down during an episode he himself must have experience d repeatedly. My dads family seem to walk that fine line between madness and genius including me, includimg y father, I can attest to times he had been absolutely crazy and I hbe also been in institutions. Thank God for my husband ever looking out for the children's wellbeing(not that I don't) and my wellbeing as well. He seems to make allowances for my sometimes outrageous behaviors and my going off on my son teachers, psychologist,and especially his therapist, yet I know know other way to communicate as I have yet to get the bnt for BPD and treatment from lots of young age sexual abuse. I constantly worry my autistic son is being sexually abused if he came home from school upset or was acting off,he finally became old enough that I could tell him some of my story and how I thought that, and mucjto my relief there were no horror stories, he laughed at me and couldn't believe I had such a worry, he has s very frank, which I love. O try to accept him as he is, not change him. Tjanlu for the wonderful article and allowing me to sound off in or comments. O wish Yaye the nest and of I was rich or had the money I would send him the latest tech camera, not to say anything is wrong w yours, I could. Stephanoe- 248lentzs@gmail.com

    ReplyDelete
  5. Thank you. My son is Little Larry aka(1 of the many nicknames he has tolerated by me and also answers every time) A-lish or Lish. My son is also 14, if I'm doing the math correctly Tate is also around his age. He is also a Genius, I also fit on the spectrum although I admit to behind a bit smart, am not a genius...lot, me 14 yr old is leaps and bounds ahead of me on his niche subjects yet I am also leaps and bounds ahead of him on mine. My father, late 50's is definitely autistic and also a Major Genius, a jack of all trades AND a master of them all. I wonder(his father was extremely abusive AMD psychotic, my dad was also forced to become right handed as he was a natural left and my mother had to "fight" his mother to allow me to maintain my natural left handedness) all the things my father endured while growing up my brother at 37 recently divulged a horrible (not sexual abuse although still more than terrible) experience at the hands of my grandfather while my father was present he did not a single thing to stop it, my brother was a very little boy, and it was told in confidence so that is as far as I can go w it, but imagine it was my dad shut down during an episode he himself must have experience d repeatedly. My dads family seem to walk that fine line between madness and genius including me, includimg y father, I can attest to times he had been absolutely crazy and I hbe also been in institutions. Thank God for my husband ever looking out for the children's wellbeing(not that I don't) and my wellbeing as well. He seems to make allowances for my sometimes outrageous behaviors and my going off on my son teachers, psychologist,and especially his therapist, yet I know know other way to communicate as I have yet to get the bnt for BPD and treatment from lots of young age sexual abuse. I constantly worry my autistic son is being sexually abused if he came home from school upset or was acting off,he finally became old enough that I could tell him some of my story and how I thought that, and mucjto my relief there were no horror stories, he laughed at me and couldn't believe I had such a worry, he has s very frank, which I love. O try to accept him as he is, not change him. Tjanlu for the wonderful article and allowing me to sound off in or comments. O wish Yaye the nest and of I was rich or had the money I would send him the latest tech camera, not to say anything is wrong w yours, I could. Stephanoe- 248lentzs@gmail.com

    ReplyDelete
  6. Recently found your blog, thanks for the post, glad to hear someone else is "there" too. We are currently on a shorts and when he can wear them again. Gonna be a long couple of months!

    ReplyDelete

Note: Only a member of this blog may post a comment.