Is SPD a Real Diagnosis?
Is SPD a REAL diagnosis? In a
One of the most frustrating things about Sensory Processing Disorders
(Sensory Integration Dysfunction) is that there has not YET been enough
SPD research through controlled studies to
quantify, prove, or predict the symptoms and life course of this disorder (in
the eyes of the medical community).
Ah, but, this does not mean it is not a real neurological diagnosis!
(Read that again)
What it DOES mean is this... Sensory Processing Disorders are extremely
difficult to get good, solid controlled studies for. The reason for this is
partially co-morbidity. So many people who have a Sensory
also share other diagnoses; anything from Autism to Aspergers, Mental
Retardation to Developmental Delays, Down Syndrome to Obsessive Compulsive
Disorder, Anxiety to Fragile X and ADHD... and the list goes on.
It has been, up until now, very difficult to isolate a "control" and a
thus leading to difficulties making generalizations and producing actual
numbers for great statistics! But there ARE studies being done (I
proposed an idea for one in college that would probably help! I need to
follow up on that... ah, so much to do, so little time!). There will be more
scientific research and data coming out in the years to come.
But, know this... it is a REAL diagnosis and the time will come when we prove
it scientifically to the medical profession. Soon it WILL be included
in the DSM V under neurological diagnoses, the MAIN diagnostic manual
for the medical profession! THIS is what our advocacy, education,
intervention, and studies are all about!
But, we can have hope even now, as this diagnosis has finally entered THE
FIRST major diagnostic manual... The Diagnostic Manual of the Interdisciplinary
Council on Developmental and Learning Disorders (ICDL).
So, why are we still not there yet? Well, in addition to
co-morbidity, Sensory Processing Disorder is a "cluster of symptoms" that fall
on a huge continuum, and an individual can fluctuate within that continuum
throughout a period of years, days, or even hours! Therefore, these
fluctuations and its vast continuum have made solid scientific studies within
"controlled environments" difficult to perform, and actual data and numbers,
hard to come by.
Additionally, because it is still misunderstood and relatively
"new" to so many professionals and society in general (even though the theory has been
around for almost four decades!), there is a huge number of people who have a
significant Sensory Processing Disorder and don't even know it. Even more
tragic is that they are being misdiagnosed and not getting the proper treatment!
One more thing on that; please understand the continuum is both
important in the "type" of Sensory Processing Disorder (i.e. vestibular,
proprioceptive, tactile... hyper- or hypo-sensitive, modulation, emotional,
social behavioral difficulties, etc.), as well as the intensity, duration, and
its consequent impact on functioning.
Some people wonder... don't we all have a sensory processing
disorder? No. We all have sensory PREFERENCES! It only becomes a disorder
when it significantly impacts one or more areas of functioning!
DO KNOW this... exciting things are happening in the field.
The most recent excitement is the name change from Sensory Integration
Dysfunction to Sensory Processing Disorder. There were several wonderful
reasons for this.
One of which is to make the medical establishment
"understand" this diagnosis from a medical, neurological point of reference.
This will make the diagnosis more precise in nature as to what is "going wrong"
and how best to treat it.
This in turn, gives way to the second reason... insurance reimbursement.
Oh, believe me, there is nothing more frustrating (well a few things maybe) than
finally understanding what is "wrong" with your child only to be denied help
because insurance companies won't pay for the therapy. It is not fully
accepted YET, but we are in the process NOW!
As more people become aware, seek out a proper diagnosis,
understand this disorder, understand its neurological basis, and seek
treatment... we WILL start to see a "Sensory Processing Disorder revolution".
It is an exciting time to be a part of! (Frustrating at times
with the "slowness", but overall exciting in how far we have come in 35 years,
i.e. since A. Jean Ayres first coined the term "Sensory Integration
Disorder/Dysfunction to describe this neurologically based symptomology).
Her legacy WILL continue as the new term Sensory Processing
Disorder will only describe the actual symptomology of this neurological
disorder. The theory and treatment will still be based on her critical body of
work and evidence...and be called Sensory Integration Theory, as always. This is
as it stands now, anyways... but I don't see THAT changing soon.
So have patience, have hope, and keep on fighting for your
WE WILL PREVAIL!
Here's some ways to find out... Is SPD Real?
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