In the battle against textures and tactile sensations, nothing beats desire.
Sensation, whether visual, auditory or tactile, can be difficult for the autistic individual. Overcoming the onslaught, dealing with the sensations and figuring out how to interact in an environment filled with these uncomfortable and some times overwhelming stimuli are a daily ritual for many autistic children. Over the years my son has learned not only how to accept them, but has also figured out how to lessen the impact. Matt is 26 years old, (almost 27), and has spent 25 of those years navigating sensory overload. Over the years I have watched him learn and grow and just like every child, on the spectrum or not, he continues to learn how to interact in a complex world. I wonder, how much of his success can be directly related to his desire to interact with his environment?
This past month we carved pumpkins for Halloween. Now Matt has drawn on pumpkins before, has even tried carving before, but this year he did it all. From cutting the cap to cleaning out the goo to creating a design to carving, Matt did it all. While all of these things required interaction and creativity I am most impressed with his ability to think through a problem– more specifically, a sensory problem – and come up with a solution all by himself. Watching him I became convinced that his desire to succeed outweighed the obstacles his autism placed before him.
First, I must give you a bit of background on Matt’s specific sensory issues. From age two his childhood was impacted by sensory issues. Lights were too bright, textures were too overpowering, sounds were too loud, smells and tastes were too strong. Over the years he has learned to dim the lights, muffle the sounds, taste something new in minute bites, and overcome his aversion to certain textures. Over the years Matt has increased his threshold for all of these things, being much more capable now than he was as a child to interact in an environment filled with sensory assaults. He can shoot targets as long as he wears ear protection, can enjoy a get together in a brightly lit room, and has learned which foods are enjoyable and which ones are not worth even tasting because he has learned that smell and taste go together. The one sensory area that he continues to battle on a regular basis has been tactile. It seems some textures still feel too awful to put up with.
For example, Matt doesn’t wear socks . . . ever. Socks suffocate his feet. It doesn’t matter how cold it gets Matt will put his shoes on without having first put on socks. When I have questioned him on this over the years he generally gives the same reply: a wrinkled nose, a disgusted face, and “no thanks”. It’s obvious. Some thing about the feel of socks does not mesh with the sensation it makes on his skin. I haven’t bought him socks in many years . . . I finally learned to accept that my son will never wear socks. But socks are not the only problem. Certain shirts can not be worn; nothing with buttons or snaps or collars. Coats require zippers. Shorts are preferred over long pants. Long pants are acceptable only under certain circumstances. For instance, he will wear them only if it is so cold that he actually HAS to.
In contrast, some textures are wonderful. Matt likes the softness of his kitty’s fur and will pet her lovingly. He is not so fond of dog fur, which is coarse (dogs are bigger and louder too, so there’s more to it than just texture). His prefers baby animals, but all animals seem to have a piece of his heart. Kittens and puppies are even hold-able. Matt will actually put his face close to their face and snuggle briefly. But domesticated animals are not the only ones in his life. This past summer we rescued a pair of hatchling brown thrashers. We had them for several weeks, feeding them and walking them through flight school and bug hunting every day. What I found amazing was that Matt allowed these wild birds to sit in the palm of his hand and even latch onto a finger to perch. Knowing full well the bird’s feet were cold and the talons sharp after that first experience he was still eager to do it again and again. It was obvious his desire to pet the bird and hold it was stronger than the tactile sensation that came with it. He really enjoys the petting zoo at the fair too and will hand feed the adult emu, the zebu, and the llama, leaving me in awe as I know he feels the forceful peck of the emu and the wet, leathery lips of the zebu and llama as they lap at his palm. I remember when just holding the seed in his hand was a major accomplishment. Those early years of struggle and tears were met with an ever increasing determination to succeed, fueled by a deeper, more powerful emotion - desire. Now Matt can even feed an Oreo cookie to a wild pony while on a day hike of the Appalachian Trail. The ponies are large and can be quite intimidating, but he fights any fears for the opportunity to interact with such a beautiful creature. The resulting smile says it all. I ask myself, is it desire that trumps tactile aversion? Does he find it within himself to overcome the uncomfortable sensations simply out of a deeper desire to experience a particular interaction? It seems so . . . at least to me. I think maybe Matt has learned how to submit himself to certain textures and increase his threshold to certain sensations, because the desire to experience that specific interaction is just too great to ignore.
What about food? Matt enjoys finger-foods, like pizza, corn on the cob, fries and tater tots. He picked out these foods as a child and generally hasn’t changed his diet much over the years. Some foods require eating utensils – pudding, ice-cream, cake, peas, and broccoli. He would rather not use a spoon or fork, but I guess the taste is worth the uncomfortable feel of silverware in his mouth. Those few I listed are the only ones he will use silverware for (some things haven’t changed much over the years… ) I seriously don't think it's the feel of the utensile in his hand - I think it's the feel of it on his tongue.
Over the years Matt has learned to touch and learned to deal with the sensations that touch can produce. And this leads us back to the recent Halloween pumpkin carving and the joy of witnessing another wonderful moment when he not only battled the unwanted sensation but used critical thinking to solve the problem of how to avoid it. This year my husband Tom, Matt and I worked on pumpkins all with a Great Pumpkin theme – Matt’s favorite Halloween show. In the course of creating our pumpkins I watched my son tackle one of the worst tactile sensations of his life. I am talking about pumpkin goo -that slimy mess of seeds, vegetable fiber and juice that must be removed from the pumpkin prior to carving. Matt watched his daddy remove the top of a pumpkin and start scooping out the nasty goo. Matt removed the top from his own pumpkin and slowly put his hand inside. A grimace washed over his face as he timidly pulled out a small bit, flung it on the newspaper, and hurriedly wiped his hand on a towel. Amazingly, he put his hand back in and repeated the process over and over, each time making a face that screamed “YUK!” Determined to do this all himself, Matt submitted his entire being to the feel of pumpkin goo – a major accomplishment. But that’s not the whole story.
Unfortunately, he couldn’t finish the project that night, nor the next night, or the one after. Some times other things just get in the way of a very cool project and that is what happened here. It was days later when there was actually time to resume the Great Pumpkin Carving of 2012. By then however the pumpkin had begun to go bad. Having sat in the warmth of his room it had already begun to mold. The pumpkin would have to be tossed and the project begun again with a new pumpkin. We all sat at the kitchen counter drawing our designs on our pumpkins, each with a Snoopy motif. Then one by one we each removed the top and started the removal of the goo. Matt opened his pumpkin and stared inside. A look of disapproval emerged on his face as he contemplated the next task - alook that said, “oh, not again!” slowly emerged on his face. Aproving grimmace was replaced with a new one – a “wheels turning” type of look. I knew Matt was working the problem out in his head. Then he looked up at Tom and me and announced in a strong and forceful tone, “I need plastic gloves!” Tom and I looked at each other for just a second, with smiles on our faces. We replied almost in unison, “that’s a great idea!” Tom hunted and found a pair of blue nitrile gloves and handed them to Matt who slipped them on like he had been using them his whole life, and happily proceeded in removing all the nasty goo. It was obvious that a feeling of empowerment had welled up within him. This generated a boost of energy that fueled his determination to get the job done. He flew through the chore so quickly that he finished before me, even though I had started first. Upon finishing, he removed the gloves with a “ha!” and went to work on the desired carving of his much loved Snoopy.
Triumphant and proud, Matt announced he was done. The mission accomplished, the foe beaten, Matt - exceedingly pleased with both himself and his work - proudly displayed the finished project. As he walked to his room to engage in some much needed video game down-time, I noted he stood taller, his shoulders back, his gait strong and confident. This was not just because he had carved a pumpkin – this was because he had figured out a way to beat the pumpkin.
I am quite sure now that it is desire that trumps sensation. I am confident that what I have seen over the years as Matt has taken on all those overwhelming sensations and forced himself to deal with the uncomfortable and some times painful stimuli, is determination - a strength of will fueled by sheer desire. By raising the threshold of sensation to new heights simply by a deep longing to interact with his environment, Matt is slaying dragons - the dragons of his autism. Desire, after all, is a powerful motivator. Autism forced him to deal with things you and I can only imagine, and Matt fights his autism every single day. He hates his autism, and he desires something more. He wants a regular life, an independent life, one where autism does not rule him. A life where he rules his autism. From the looks of it, his desire is his most powerful weapon in his ongoing battle to slay the negative aspects of his autism. I know I will never underestimate the possibilities that lay before him because I understand the power of sheer desire in overcoming the obstacles of his autism. I have witnessed his determination and his will-power. I have seen the courage that emerges when desire is more overwhelming than fear, more overwhelming than pain. I understand now. I have been a witness to the slaying of dragons . . . and I am in awe.