I'm writing this article as I'm in still in the midst of information-gathering to find the best course of action for my son. Below are articles I've found helpful with a brief summary to save you time. Feel free to jump below to see the "summary" of what I've gleaned so far. On message boards pertaining to SPD I have joined I am finding emotional, tired parents - and a medical community with no clinical diagnosis in sight for SPD, or at the very least, conflicting information from health professionals. There seems to be a great deal of confusion and cloudiness surrounding the issue of Sensory Processing Disorder, but perhaps my effort at organizing my own thoughts on the subject can help another parent seeking to find answers.
The best definitions I've found for Sensory Processing Disorder:
WebMD: "Sensory Processing Disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the sense. Formerly referred to as sensory integration dysfunction, it is no t currently recognized as a distinct medical diagnosis."
Star Institute for Sensory Processing Disorder: "Sensory Processing Disorder or SPD (originally called Sensory Integration Dysfuntion) is a neurological disorder in which the sensory information that the individual perceives results in abnormal responses."
This article from Psychology Today is a great article defining SPD with an explanation that "true sensory disordered children have difficulty doing regular activities due to their disorganized responses to sensory input." This is not the same as a highly sensitive child, whose sense may be heightened but still may lead functional lives.
Wikipedia: SPD is a condition that exists when multisensory integration is not adequately processed in order to provide appropriate responses to the demands of the environment. It is still debated as to whether SPD is actually an independent disorder or the observed symptoms of various other, more well-established, disorders.
Carol Stock Kranowitz, M.A. is the author of the ever-popular book Out of Sync Child: Recognizing and Coping with Sensory Processing Disorder. A former preschool teacher of over 25 years, she is a pioneer and leader in development of innovative programs for those with SPD, speaking regularly about the subject in the United States and abroad. She defines SPD as a common but frequently misdiagnosed problem in which the central nervous system misinterprets messages from the senses. [Amazon associates link above]
Informative articles I've found describing SPD as an actual neurological dysfunction:
Brain’s Wiring Connected to Sensory Processing Disorder UCSF Study Shows Measurable Neurological Differences In Affected Children - .."Researchers at UC San Francisco have found that boys and girls with sensory processing disorder (SPD) have altered pathways for brain connectivity when compared to typically developing children, and the difference predicts challenges with auditory and tactile processing."
Is Sensory Processing Disorder the New Black? (Article from Huffpost) - The authors describe SPD as .." a neurological condition that distorts the way we receive and perceive sensory input through sight, sound, touch, taste and movement. It affects daily functioning, social and family relationships, behavorial challenges, regulating emotions, social esteem and learning." The mother in this story finds that her child had a dietary irritant causing uneven neurological development, which is what SPD is rooted in.
Articles that have helped me to understand why SPD is not a recognized clinical diagnosis yet and even described as "quackery" by some:
The Debate Over Sensory Processing Disorder (From The Child Mind Institute) - Although many occupational therapists acknowledge and treat SPD, clinicians who use the DSM (Diagnostic and Statistical Manual) do not recognize it as a condition or as a diagnosis and many times have never even heard of it.
Why Sensory Integration Disorder Is A Dubious Diagnosis - "Since few (if any) adult patients have SID, it is reasonable to question whether costly interventions are really necessary for what are most likely self-limiting problems of neurodevelopmental immaturity and anxiety. Well-designed scientific studies are needed to determine whether or not SID is a definable disorder, and even if so, whether the treatments currently prescribed are effective or necessary."
The Next Big Medical Fight: Is Sensory Processing Disorder A Real Disease? - .."a pitched battle between the medical “establishment” (if that term can be used non-pejoratively) and angry families." This article helps one see that more and better scientific research and studies are needed for diagnostic clarification.
Anecdotal support for Sensory Processing Disorder:
Our Story With Sensory Processing Disorder - A Mom shares her daughter's tactile, vestibular and auditory struggles.
Is "sensory processing disorder" a load of crap? - An article written and posted on BabyCenter.com by a skeptical mom who had a child with sensory processing issues.
The Real Stories of SPD Families - Encouraging article for SPD families with real-story anecdotes toward the end.
Sensory Processing Disorder: A Mom's Story - From crunchymom.com, a mom's story of her sensory-sensitive daughter. A great encouragement that many SPD kids are highly intelligent.
My own personal conclusions (as a parent of one such "sensory-sensitive" child):
Yes, SPD is a "thing"! Some doctors say yes, some say no - but ANYONE who is parenting or is close to a child with severe sensory processing issues will tell you that it is not just in the imagination. While it's true that some mislabel their child as having SPD when they are truly "just being three" (or whatever the real cause may be), that is true of many disorders and maladies. Parents misdiagnose their children frequently, or are prone to exaggeration when speaking to the difficulty of parenting a child with their own child's struggles. However, for parents and children who truly struggle with Sensory Processing Disorder, to blow off their struggles with disbelief and no real help is quite simply - no real help. And very discouraging to the parent. If you know of a child struggling with SPD, be an encourager to the caregiver!
As to the medical community, we as parents of SPD kids need to push for new clinical testing and understand that these things do take time. Just because an official SPD diagnosis isn't to be had yet does not mean we should not work to understand further what is happening with our children's obvious neurological dysfunctions for our kids and for future generations. If indeed these sensory processing dysfunctions are only to be grown out of, should we still not treat the children whose lives are severely impacted throughout their entire childhood? Obviously it would poorly influence other facets of well-being and health to be so medically impaired during the growing up years. Mental and behavioral health is important for children, even if they are to "grow out of" the malady. We do indeed need to push forward for the benefit of our children. Again, we must remember that clinical studies do take time and we want them to be done right. Meanwhile, we are the parent detectives for our children and we fight to make their lives better while we wait for the medical community to test, retest and properly diagnose.
What has your process looked like with SPD? Let me know what I've missed or if you enjoyed the article in the comments below!
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