Sunday, April 1, 2012

Why does he do that?

- from Christy

*DISCLAIMER: The following post shares some information, videos, and pictures that are graphic in nature. We would never want our posts to be seen as voyeuristic or crass, and it should be understood that, in sharing our boy's story, we want to respect and honor them while educating and encouraging others. This is part of the story of Autism for our family and many others.  

"Why does he do that?" This is one of those questions I hear often, and I wish the answer were simple. MANY children living with Autism have a disorder called Sensory Processing Disorder or Sensory Processing Dysfunction. It is a disorder not recognized by many doctors and not covered by most insurance companies, but, in the case of our boys, it is one of the most debilitating and hardest characteristics of their Autism.

Jalen making another mud creation.
I could give you the textbook definition for SPD, but it will be clearer if I explain it in layman's terms. (NOTE: I am not a doctor. The information I am about to share is what I have found to be true in our boys.) So we all remember learning about our five senses in elementary school, but what you probably weren't taught is that we actually have nine senses.  The senses we were taught are hearing, seeing, smelling, tasting, and touching. The other four senses are as follows: vestibular sense, temperature, proprioceptive sense, and pain.  Body temperature and pain are clear enough, but the other two are probably unfamiliar to many. The vestibular sense "is the sense that allows an organism to sense body movement, direction, and acceleration, and to attain and maintain postural equilibrium and balance." Proprioception has to do with awareness of ones body parts. "Neurologists test this sense by telling patients to close their eyes and touch their own nose with the tip of a finger. Assuming proper proprioceptive function, at no time will the person lose awareness of where the hand actually is, even though it is not being detected by any of the other senses. Proprioception and touch are related in subtle ways, and their impairment results in surprising and deep deficits in perception and action." In a child with SPD (remember a lot of kids with Autism have SPD), their brains cause their senses to work differently than typical people's senses. For example, a person with SPD may have very sensitive hearing. The sound of humming to the typical person, may sound like a fog horn going off to someone with SPD. Likewise, when looking at another person's face, SPD may cause someone to be completely overwhelmed because they see every little nuance or imperfection. I once read that a young girl with Autism said when she looks at someone, her eyes take a thousand pictures of the person's face in just a second. For this reason, she most often avoids eye contact. SPD can also cause the sense of smell to be overly acute. And I don't mean "oh that is a really strong perfume you are wearing" acute. I mean "how can you smell the onions that are all the way on the other side of the store" acute. People with Sensory Processing Disorder often have severe oral aversions. Teeth brushing can feel like torture, and their diets are often narrowed due to sensitivities to food textures and tastes. I know several children who gag just looking at food that appears "wet" in consistency. Imagine if your skin detected every little fiber in the clothing you wear. Most of us don't worry about being aware of the tag on our shirt all day. People with SPD have described their clothing making them feel like thousands of bugs are crawling all over their bodies. Vestibular and proprioceptive movement can be significantly impaired causing a lack of body awareness and difficulty in maintaining balance which can cause clumsiness. All of the above are just a few examples of hypersensitivities when it comes to SPD.

Josiah climbing high.
BUT... just to make matters more complicated, SPD can also cause hypo-sensitivities.   A person with SPD may seek out loud noises, or they may miss details that they were suppose to see and that would be obvious to the typical onlooker. SPD can cause a dulled sense of smell and taste. Things that should smell and taste putrid, may be pleasing to a person with this disorder. Some people with Sensory Processing Disorder don't feel pain as severely as typical people or they may be very sensitive to temperature changes. As I mentioned before, SPD can also affect how people process their body moving in space. Imagine how this could make you feel riding a bike or even riding in a car. These are just a VERY few examples. The list is endless, and, in many children and adults with SPD, they struggle with both hyper and hypo sensitivities. That's right, SPD can manifest itself in some really odd combinations. Let me compare our boys to give you an example of how SPD affects kids differently.

Josiah constantly trying to block out noise.
  • His sense of hearing is very sensitive. He covers his ears a lot of the time in order to block out all the background noise his hearing picks up. Josiah often looks like he is in pain from his surroundings being too overwhelming.
  • Because Josiah is non-verbal, we can't know for sure how his senses process things, but I do believe his sense of seeing is probably hyper acute. He often squints or closes his eyes.
  • Josiah has an extremely narrowed diet. Since the senses of smelling and tasting are linked, I believe both are affected by Josiah's SPD. He tends to eat mostly crunchy snack foods or things that are dry and sweet. He only eats a couple of fruits, and he completely rejects all vegetables and meats. 
  • Josiah's sense of touch is hyposensitive. He doesn't respond to pain as dramatically as typical children, and he seeks out very rough interactions with others. He likes his back to be pounded, his legs to be squeezed, his arms to be tickled, and he loves for his body to move in space. He loves to swing and spin, and he often requests to ride in the stroller or car when upset. 
Josiah loves the water, and both the boys eat the bubbles and lick the bar of soap.

  •  Jalen is starting to speak more and more, but he mostly just names things right now. His communication deficits make it difficult to know what he is hearing and seeing. If anything, we believe Jalen hears and sees details in the world around us that most typical people do not. He doesn't seem overwhelmed very often by this, but it certainly causes him to be distracted. Often it is almost impossible to get his attention. He is in his own world checking out all the details we can't pick up on. 
  • Both of the boys have PICA, but Jalen's is VERY severe. His senses of smell and taste are like nothing I have ever seen. He eats everything outside, and I mean everything. Dirt, gravel, mud, stagnant water, mulch, wild onions and various weeds, flowers, and, if he could get to it, animal waste. This kid is a mess, but SPD is largely to blame. 
  • Jalen HAS to get into dirt.
  • Jalen's sense of touch seems hyposensitive. He likes being ticked all over and he loves to be squeezed. SPD has affected Jalen's ability to predict how his body is moving in space in certain ways. He often gets terrified for someone else to control his body movements such as picking him up, twirling around with him in their arms, or lifting him in the air. But, as long as he can control his body, he is a daredevil. He loves climbing up high, and swinging, and jumping, and one of his favorite activities is balancing while walking across the half wall surrounding our carport. His calculated climbing reminds us of a cat.
Jalen using the Nestle Quick to make mud.

The question many people have is how do you treat SPD. There really isn't a cure for Sensory Processing Disorder. The treatment is consistent therapy to desensitize the senses most greatly affected. The therapy can seem odd to many people. In order to get proper output, you have to provide proper input. If a child has oral aversions, you can stimulate the mouth by rubbing the gums or getting the child to eat pop rocks, just for one example. A surgical brush (used by doctors when scrubbing their hands before surgery) is used to stimulate the skin all over the body to help with organizing the nervous system and to help with skin sensitivities. To help children with vestibular and proprioceptive issues, therapists swing them in all different types of swings. They spin them and create obstacle courses that help with body awareness. There are also feeding therapies to help broaden children's diets. Our living room has a trampoline, slide, tents, tunnels, and even a swing hung from the rafters. All of these are tools we use to provide proper input to help calm Jalen and especially Josiah during times of sensory overload.   

More ear covering.

WOW! If you made it to the end of this post, you are a trooper, and I thank you. The number one cause of meltdowns in Josiah, is sensory over-stimulation. Can you imagine what it must be like when multiple senses are functioning wrong and being bombarded all at once? One of the greatest disruptions to peaceful living round these parts is Sensory Processing Disorder. For all the parents reading this whose child's Autism is greatly complicated by SPD, we can empathize completely! Our faith is being tried, and our patience is ever growing.

*All quotes taken from Wikipedia.

The following are several videos of our boys, and some of the "joys" we experience due to SPD. Once again, watch them at your own discretion. One of the videos involves a bit of poo. 

Jalen loves the mud. His SPD causes him to be  drawn to textures that are messy. He often pulverizes his food into a mash, licking it to make it really slimy. After watching the video, you may be concerned that Jalen is wearing a girls bathing suit. He loves the silky texture of Olivia's bathing suit, and, to avoid him taking all of her suits, we have given him the blue one to wear at home. For Jalen it's all about how it feels, and not whether it is gender appropriate.

We were at the park with the kids in this video. Josiah is not only seeking input from swinging, but he is also licking the sand. His PICA is not as severe as Jalen's but he eats his fair share of sand, rocks, and dirt. 

Josiah loves swinging in his swing. It provides him with vestibular input, and we often use the swing to calm him during meltdowns and to help us when getting him to sleep.  Depending on the way you swing him, it can either cause heightened arousal or provide a calming effect.

When the boys have a bowel movement, they try to pull their diapers off. Josiah tends to pull his off due to discomfort. He will put his hands in the poo that is smeared on his skin, but he really doesn't try to explore the poo. On the other hand, Jalen sees poo as being just like mud. This video was of a very mild episode. Although, I did realize after completing the video, that the certain someone who shed this diaper also crawled into the tent that Jalen sleeps in. So... it was a bit messier than I realized when videoing. Still it doesn't compare to some of the messes we have cleaned up. 

Jalen is making yet another one of his mud creations. I let him make this mess just so our blog readers can get a sense for what we are talking about.

1 comment:

  1. I have been eyewitness to some of these episodes, and they can sorely try your patience. Christy and Jeremy, you do a great job of dealing with what is sent your way. By the way, next time stop Jalen before his creation is so elaborate. That was awful to try to clean off!!! Love you!


Just use your name, not your email address.