A neurotypical (an individual not on the autism spectrum) person hears, sees, smells, and feels. A person with autism also hears, sees, smells, and feels. However, many individuals on the autism spectrum have trouble hearing, seeing, smelling and feeling independently of the other senses because of their inability to discriminate between the senses. Imagine being cold, listening to loud sounds, seeing bright flashing lights, and smelling a pungent odor…all at the same time. How would you know you are cold or that the lights are too bright or the smell is stinging your nose? A individual with autism often deals with Sensory Processing Disorder (SPD). Most children (90%) with Autism Spectrum Disorders have some sensory issue (Tomchek and Dunn, 2007). According to the SPD Foundation, “Sensory processing (sometimes called “sensory integration” or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or sensory integration.”
There is often a clear misunderstanding about what Sensory Processing Disorder/Sensory Integration Disorder is and this constitutes a great opportunity for the autism community to highlight this disorder. Researchers Ahn, Miller, Milberger, and McIntosh (2004) found that that at least 1 in 20 children’s daily lives is affected by SPD, while 1 in every 6 children experiences sensory symptoms that may be significant enough to affect aspects of everyday life functions (Ben-Sasson, Carter, Briggs-Gowen, 2009). As with any illness or disorder, the importance of getting accurate factual information about Sensory Integration Disorder (SPD) is imperative. Information is the life line to many individuals developing and communicating on a level in which they can function effectively throughout a typical day.
I am a mother of 3 wonderful children. My youngest Teagan (age 4), was diagnosed with mild autism at the age of 2. In addition, to his autism diagnoses, Teagan has sensory issues as well. Although there were obvious verbal delays, Teagan indicated nonverbally how intelligent he was despite his diagnosis. About a third of the children who are gifted have SPD. Teagan is also funny and very loving but SPD keeps him from verbalizing this to the very ones who love and understand him. Children with SPD without other disorders have normal cognitive abilities, normal mental health and can engage with others (as long as the environment is conducive e.g., not too noisy or busy or overwhelming). We struggle daily with making the environment “just right” for Teagan. His world cannot be “too loud”, “too quiet”, “too soft”, “too hard”…it is the happy medium that we search for daily!
SPD is physiological, not parental, not psychiatric, not purposefully bad behavior. Teagan’s interpretation of his world is much different than yours and mine, but he is not alone. Research has found that between 5% and 16% (1 in 20 to 1 in 6)of children have SPD (Ahn, Miller et al 2000 ; and Ben-Sasson, Carter et al, 2009). Teagan is also a chameleon, day to day he can seem like a different child, based on the environment. Children with SPD are very sensitive to external factors such as the way an environment looks or sounds or smells. They appear very different in different settings. My husband and I are in an intense guessing gaming to determine how Teagan will act in different places. Will he melt down at school, will he feel anxiety at Disney World, will he enjoy music class? However, there is no consistency. In fact inconsistency is the corner stone of this disorder. The same place, the same time, the same environmental factors could make him melt down one day…but act perfectly “normal” the next. Inconsistency is our normal. We are redefining “normal”!
There are thousands of child just like Teagan, with parents just like my husband and I who are searching for factual information and support for autism and SPD. SPD can be a devastating and often unrecognized disorder that has now become our life. This journey with Teagan started with a single step towards helping him and continues with the hope that even a small accomplishment by Teagan is hope for a new day and more joy in our lives.