Five Reasons Why Sensory Processing Disorder is Hard to Recognize and Explain
Updated: Mar 6, 2020
Earlier this week, I had a parent-teacher meeting at T's school. For the second time in three weeks, the teachers said "they didn't see" the atypical behaviors my husband and I had prepared them for before T started school in early November. The teachers noted that when they reviewed the reports from the occupational therapist, "it seemed like they were written about a different kid".
And while I should have been ecstatic (because it indicates that all the interventions and intensive therapies are working), I was actually super annoyed. Super annoyed because much of this last year was spent first trying to understand my son's unusual and sometimes paradoxical behaviors. Then, just as a few initial puzzle pieces started to link together, I was expected to offer a concise and simple explanation for why T suddenly couldn't function at school, why he wasn't communicating, making consistent eye contact, or eating anymore, and why I needed to quit my job. And on top of that, why his sensory issues emerged in some ways and not others, why he had developmental delays in some areas, but seemed advanced in other cognitive feats, and why the sensory issues emerged in some contexts more than others. People wanted to know why he "seemed fine" in certain ways, but not in others. The truth is, I didn't know. So it was impossible for me to deliver a concise, simple, and straightforward sentence like, T has a broken arm or he has asthma or he is allergic to shellfish. But that didn't make what was happening within T's brain and body any less real or devastating.
As a side note, let me just say, I am in no way diminishing how hard it is to deal with the aforementioned challenges for a parent. Broken arms and allergies and asthma suck. What I am trying to emphasize, however, is that to explain those three challenges requires a single sentence. And then, in the conversation and in your relationship with whomever you are speaking, you can relatively easily establish a common shared understanding and move forward both onto the next topic and/or in the relationship. Sensory Processing Disorder (SPD) is not a one sentence type of problem. It is a conversation stopper, a brow-furrower, a question marker, an I-don't-know-if-I-believe-that-is-really-a-thing, type of problem.
It does not help that SPD is not accepted in the diagnostic statistical manual, as a stand-alone diagnosis, despite the fact that it is very much recognized and accepted as a significant challenge that often pairs with autism spectrum disorders and/or ADHD. And indeed while according to my OT, it is uncommon to have a truly stand-alone SPD without other issues (only about 6% of cases), those "other" issues can be things like giftedness, anxiety, or trauma (pp. 92-102), which are often more difficult to assess and recognize in very young children, especially if communication has become a challenge due to... you guessed it... sensory issues.
Additionally, that 6% statistic (hyperlink forthcoming) is made up of real kids and families that have the mixed luck of falling into the wrong sliver of the sensory issues Venn Diagram. Although they may not have the challenge of dealing with additional diagnoses like autism or ADHD, the stand-alone SPDers exist on a lonely and very expensive island. As a result of falling into that stand-alone sliver, all the things that parents need to survive the challenges that come with parenting a disability are withheld: support and understanding from medical professionals, insurance coverage, ready-made support groups of parents who understand them, and the respite of having people respond to their hollow stare and exhaustion, with a "Oh man, that must be hard", rather than "What is that? or "Oh yeah, my kid doesn't like loud sounds either". Because these parents are hanging off the edge of a cliff with white knuckles and need a rope, not someone to step on their toes and say "prove to me that you are actually going to fall!"
It's even hard to communicate about SPD between parents. For example, when I returned from Chicago with T last summer, my head was spinning with all the new information that had been thrown at me. I had also just survived four whole days and two plane rides alone with my son, who just weeks earlier had been violent, non-verbal, and had locked my husband in our basement while I was hiding outside on the street corner with D strapped to my chest so he didn't get caught in the crossfire of the meltdown. In Chicago, T had been assessed by a speech pathologist, occupational therapist, and child development specialist, and my dear friend had coached me on a new parenting approach and Floortime.
In the kitchen, after the kids went to bed, I explained to J that it seemed that T had Sensory Processing Disorder, some developmental delays (which his school had also identified), and may have some other "individual differences" going on that we would need to get formally tested (autism spectrum disorder). And that we would get a second and third opinion in D.C., but in the meantime, I wanted to change up our parenting approach, find an occupational therapist, and stop banging our sore heads against a wall. And J, being the cerebral and logical man that he is, demanded to know the "Theory of Change" before we could start. And no matter how hard I tried, I couldn't articulate it because honestly, I didn't really understand it either. Even after having the privilege of being personally coached by a child development professional for four days, getting advice from specialists at the top of their field, and putting all my academic, doctorate-level research training to work in the pursuit of an understanding of what the hell was going on with my son, I couldn't explain it.
So that night, my husband and I went back and forth in the kitchen, arguing about this elusive "Theory of Change" until eventually we realized we were yelling at each other out of sheer desperation at the situation and that it was time to go to bed. It is only now, more than six months later, that we can laugh at that moment because we are finally starting to understand both what our son is struggling with and what we can do to help him.
Sensory issues are really. damn. confusing. And their complexity makes it really hard on parents, and hard on kids who suffer from them. So in response, I plan to write about - from the perspective of a parent - the five primary reasons why I believe it is so hard to recognize and communicate about SPD with examples from my own experience with T. (I will hyperlink each to a new blog post as I write).
SPD is context-specific.
SPD is internal-experience specific.
SPD is not just over- or under- sensitivity, it is also lack of sensory identification and integration.
In the meantime, hope this is helpful!