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Autism and Anxiety… its real

April 2, 2014



Day 2 of Autism Awareness month!


When Rett first got diagnosed at 2.5, our challenges, concerns and everyday life looked a LOT different than it does at 3  years later.   You look at your little cute toddler and think ‘he doesn’t seem like he’s THAT autistic. All those problems everyone keeps talking about, we won’t have those.’   Our diagnosing doctor told us that sensory issues were more likely to rear their head the closer Rett got to five and boy was she right.  So if your friend’s 3 year old just got diagnosed just remember that their journey is going to be evolving into something that might look very different in a few years.


One thing besides all the sensory issues that came up was anxiety.  I have anxiety.  Worrying about how in the world I’m going to get XYZ done and feeling loaded down and overwhelmed. But Rett feels like that all the time.  With things that wouldn’t cause typical people stress.  So it is difficult to understand and difficult to guess what is going to bring on the anxiety.  The most important thing to remember is that it is real and fighting the reality of it won’t get you or your kid anywhere.   I have a few examples of how we see anxiety everyday.


The first eye opener I had to Rett’s anxiety and when I was finally forced to admit it was real and that acknowledging it and trying to find ways to help him was the answer, not ignoring and just expecting him to work it out was at speech.  Rett’s #1 behavior issue is crying.  His frustration tolerance is much lower than a typical 5 year old. He cries to avoid situations, he cries when he’s frustrated, he cries when he thinks he’ll get his way.   This one time in speech, Rett was having issues cooperating and pushing through the frustration through the crying.  He was so anxious that we were going to forget his sucker at the end. He kept bringing it up.  ‘When do I get my sucker?’ ‘First cards, then sucker, right?’  Asking the same questions over and over.  Its NOT that he forgets the answer.  Its that he likes to keep hearing it. It soothes him and he’s trying to calm the anxiety. Once our speech path introduced a count down system that told him exactly how many more cards he had to do and as he did them, he put starts on his velcro number board, the behavior went away.  We also introduced a visual schedule of what was being done that day that included his sucker so he could see the steps and knew we wouldn’t forget.  That has been phased out but its always there to bring back into play if the anxiety levels go back up again.   I saw the crying and the asking for his sucker as a way to avoid doing his work, but because we work with a great speech path, she saw the true cause of the issue ANXIETY and brought out supports to make the behavior go away. Which in the end, is the goal.


Another example of Rett’s anxiety was his sudden interest and awesome memory of streets, directions and routes we take to get to certain places.  I think this started when I started using my garmin.  Rett picked up left and right really quickly from the auditory instructions he was hearing constantly from the Garmin.  He also has a deep love of maps.  He started saying things like ‘that way is to the Y’ or asking us if we were going to speech when we took a certain highway.  This was an interesting new skill and his awareness of his surroundings was also exciting.  But once he was aware that this road took him to a certain spot, he started becoming really anxious about where we were going.  Another problem that children with autism often have is forming concepts. Like understanding what a grocery store is or a fire station.  They might just not have the word for it or not understand exactly what it is.  So he’d say ‘where are we going?’ and we’d answer ‘to the dentist’.  Well what is that? What is going to happen there? Who’s there? Am I going to go in?  Is it going to hurt?  Not all of that is vocalized but you can imagine that the ‘where are we going’ then leading to an answer of a place he doesn’t understand just adds anxiety on top of anxiety.  And he will just keep repeating the question.  I think I answered him at least 10 times yesterday on our way to the dentist.  I kept trying to think of different ways of explaining where we were going, what was going to happen and why we were going there.  None of this helped his anxiety.


Anxiety is very real and is the fuel behind a lot of the behaviors that these children use as a cry for help to help handle an emotion that is way too big for a child to handle.


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