….but he doesn’t look autistic!
Oh, if I had a dollar for every time I’ve heard that from friends, acquaintances, people at church, teachers, therapy and medical professionals. They have all said it at one point or another, although,Yes, D does have high functioning autism.
What does High Functioning Autism look like?
Many times, children with high functioning autism have days that can best be described as normal. These are the days when your child is able to handle and process everything you throw at him/her. These are the days that s/he resembles a neuro-typical child for the most part.
They are the days that leave you trying to shake the cobwebs from your brain and saying to yourself, Maybe it’s me? Maybe I’m losing my mind and there is nothing wrong with my child?
Ahh…but never fear, you will quickly be snapped out of that thought with an unexpected dose of autism (how we describe it in our house).
Wait! Don’t yell at me for calling it bad behavior. This is what high functioning autism looks like, not what it really is!
Many times what someone from the outside sees is the behavioral characteristics of a spoiled brat. They see a child who is throwing a fit in the store begging for candy or a toy. They see a child who is fussing, yelling, or lying in the floor refusing to move because s/he wants to go home. They see a child who kicks the tire of the car or hits someone with him/her.
Those people from the outside looking in begin to judge our parenting. They wonder why our children aren’t better behaved. What have we done to allow them to behave this way? Why can’t we get them under control?
What those people don’t see is the child who expends every amount of emotional, mental, and physical energy in his or her body to maintain composure for an entire school day.
They don’t see a child who has sensory processing disorder and has an adverse reaction to the fluorescent lights in the store, or the bright red color, or the sounds of all of the people talking around him.
Those people don’t see the child who has an intense fear of getting lost in a store, nor do they see the child who has such an extraordinary sense of smell that his brain cannot process all of the smells of the people, the perfumes, the paper.
They don’t see the little boy whose body feels like he may explode if he doesn’t touch the soft fabric of the t-shirt across the aisle or rub his hands across the ridges on the caps of the bleach bottles.
Children with high functioning autism are bundles of anxiety. Our psychiatrist actually defines high functioning autism as inconceivable anxiety. Of course, there are other diagnostic criteria, but anxiety is one of the biggest pieces of the puzzle.
Nearly anything can cause anxiety in children with high functioning autism. It is important to be aware of the triggers with your child or the child you are working with. In our house, some of the triggers are lack of sleep, fear of losing control of himself, fear of disappointing someone else, changes in routine, and not knowing or understanding the expectations of those in authority are just a few.
School is one of his biggest anxiety triggers. It encompasses more than one of the above triggers. He works to maintain himself all day so that he does not lose control of himself. He is terrified of disappointing his principal, autism support person, his teacher, or us. School is full of routine changes with fire drills, assemblies, testing, substitute teachers, and more. Not understanding the expectations is usually not an issue, but with a substitute or new teacher, there is a lot hanging on his inability to read social cues.
These children often feel like everything inside their bodies is out of control. They are often out of touch with their emotions, their senses are in overdrive, they are full of anxiety, nothing in their body works as far as they are concerned.
Their feelings of lack of control create a sense of urgency to be in control…They feel out of control, so they want more control.
Unfortunately, because of their lack of social skills and weakened ability to read the emotions of others, their desire for control often comes across as mean, rude, and aggressive.
We often see this in conjunction with D’s increased anxiety in certain situations. One of our more irrational situations that drive anxiety and control is the elevator. He is panic-stricken at the thought that one of the littles may push the alarm button. Therefore, he attempts to control the situation by pushing the littles away from the control panel inside the elevator, he often yells at them to get away, and he will stand with his body against it to be sure that no one can get near it.
Adding to the anxiety and feeling like they have lost control, children with HFA have very rigid thinking.
These children are built on routine, they are built on things being the same, and things being the way they perceive them. These children are not your typical creatures of habit, instead they perseverate, or obsess, over things being the same all the time. Their food must taste the same, their favorite place to eat should not change the menu, they want only one brand of pencils, crayons, or markers. They are unable to go with the flow of out with the old, in with the new.
They also find something they are interested in and obsess over it to a point of driving everyone around them crazy.
If it is a movie, these children know every word to their favorite part (they may not know every part of the movie), they know the words to every song, every movement of the characters, the entire movie set. If it is a certain comic, they will know everything about the characters, from their favorite food to their shoe size.
Oh, and, you will know it all too!
D has an unusual obsession with The Doodlebops. He knows every song, every movement to every song, what each of their instruments and costumes look like. He knows everything and he demonstrates that through constant play.
His play, however, is not imaginative. His thoughts are so rigid that he is unable to get past what is on the show to play with what is in real life. He cannot pretend that a long yellow shirt is DeeDee Doodle’s dress when playing with Pouty. Instead, he cuts up a pillow case, uses a pink crayon, and colors it to resemble the piano dress that is worn on the show.
The level of rigid thinking seems ridiculous, but their minds use this rigid thinking to maintain control and to feel as though they have some control.
Over the next several posts, I will discuss these areas and many others in an attempt to help others understand this crazy thing called high functioning autism.
Please leave comment here to add to the list of characteristics, or offer any other helpful information in future posts. I look forward to hearing what you have to share.