Mother to a child who has been diagnosed with high-risk for autism with sensory processing issues.
It was clear by five months old, one of my son's favorite activities was hanging upside down.
Avoid the sensory processing disorder label
If you've landed here, it's because someone has diagnosed your child with sensory processing disorder (SPD). You may have found out your insurance no longer covers some or all of your child's therapy. You are asking why.
You may have found out that your child no longer qualifies for an IEP or even a 504 plan, although this depends upon the symptoms your child displays, because sensory processing disorder can cause learning disabilities. Although not all children will have learning disabilities with SPD, they may be labeled as having behavior problems by the school, when actually it is the body's inability to regulate itself (due to sensory processing disorder) resulting with behavioral issues.
There is no diagnosis code for sensory processing disorder, and herein lies the problem.
Another dilemma is co-morbidity of conditions—when there are two or more medical conditions that exist—and this is not uncommon. For example, your child may have been diagnosed with autism and sensory processing issues or ADHD with sensory processing issues. What you've found is that the primary condition is covered by insurance, and although some of the therapies will assist with sensory processing disorder, sensory processing disorder has been determined to be only a symptom of your child's diagnosis.
This means that your child's therapies are not really tailored to fit sensory processing disorder (like not having occupational therapy as often as your child requires it). This is a huge problem, because sensory processing disorder often mimics ADHD, autism, even anxiety and/or other conditions resulting with medical treatment (including medications) for a condition your child may not actually have. This does not mean, however, that your child doesn't have a condition that results with sensory processing issues rather than the disorder itself.
Sensory Processing Disorder is currently a symptom or an "other" (meaning SPD doesn't exist)
There are two bibles of diagnosis code books. One is the ICD-10, the International Classification of Diseases. This book is recognized by the world (not just the United States). It is updated yearly through the World Health Organization (WHO), and every year there are additions and/or deletions.
The other book is the DSM-5, Diagnostic and Statistical Manual. It is updated less frequently, only recognized in the United States and Canada and is published by the American Psychiatric Association in order to assign symptoms to mental disorders and classify mental disorders.
Both the ICD and DSM mention sensory processing ISSUES. But neither book recognizes it as a stand-alone, medical condition:
The DSM-5 lists sensory processing issues as a symptom of a number of mental health conditions.
The ICD book lists "sensory integration disorder" under F88; however, this code is classified as an "other condition". The lists of "other" conditions are long, and most conditions have more appropriate and accurate codes in order to better describe a medical condition. Let me explain why being listed as an "other" is less than ideal.
The Importance of a Diagnosis Code for SPD
The ICD tracks how many people have a disease. This is how we know how many people in the United States and around the world have medical conditions like heart disease, breast cancer, influenza, etc. It also allows the medical community to know what regions of the world have more or less of a population suffering from certain conditions.
This is also important for monetary purposes. In the United States, we have the National Institutes of Health (NIH). Money is allocated by the government in the yearly budget to the NIH for all different types of medical conditions based on the number of people with a medical condition for: research; new drugs; studies; awareness campaigns. These are just a few examples.
So imagine if you have a diagnosis listed in an "other" category. Your medical condition is not counted—nobody knows how many people suffer from your "other" medical condition, and there is no allocation of funding for, not just treatment, but research for your "other" medical condition. Technically, your "other" condition does not even exist.
American Academy of Pediatrics Refuses to Acknowledge SPD or SPD-based Therapies
Despite lack of acknowledgement within the medical community of sensory processing disorder, there are a few organizations that research this condition, and some of the more well-known organizations are: STAR Institute; Child Mind Institute; UCSF has ongoing research and studies.
There is a push for recognition of sensory processing disorder, and not just by these organizations. Occupational therapists, pediatricians, psychiatrists, psychologists and other medical professionals have failed year after year to have SPD recognized by WHO within the ICD as a stand-alone, recognizable medical condition.
The official statement from the American Academy of Pediatrics is that sensory processing disorder is a symptom likely due to an underlying developmental disorder and not to use sensory processing disorder as a primary, independent diagnosis (that "other" code: F88); rather, utilize a diagnosis or diagnoses of other developmental disorders such as autism, ADD, ADHD, developmental coordination disorders, and anxiety disorders.
Additionally, the AAP indicates that "Occupational therapy is a limited resource and families should work with pediatricians to prioritize treatments based on problems that affect a child’s ability to perform daily functions."
A link to the AAP statement can be found at the bottom of this article.
Utilizing a diagnosis that is inaccurate, for now at least, is the best option
Clearly, the need for an official diagnosis of sensory processing disorder is urgently needed. Because SPD remains off the grid, there are no evidence-based therapies to utilize occupational therapy by itself (because there is no funding for studies). So at this point in time, the AAP is correct in relaying to use those other conditions recognized within the medical community. These other developmental conditions—even if your child does not actually have them or displays some developmental conditions BECAUSE of SPD—will provide insurance coverage, protections in school (like an IEP), and at least some assistance with therapy for SPD.
My son is 2-1/2 years old, and although it is not perfectly clear as of yet if his problems are all sensory related, his pediatrician advised me not to have the autism diagnosis removed from his medical record…ever. She will not remove it unless I request this (she has a son with sensory processing disorder). She understands the ramifications of removing a covered, identifiable diagnosis (covered by insurance and protecting him in school). This would end up harming him for his entire life.
So, until there is success with obtaining a "real" medical condition that is separately identifiable for sensory processing disorder, we have to work around this, find the loopholes and do what's best for our children to ensure they receive whatever help there is available, even though that help may not be entirely tailored to fit all of your child's needs.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2018 Jenifer L