"Adult Sensory Processing Disorder:" What greed hath wrought

I am writing this entry in the hope that it will be referenced as well as my other pages on "Adult Sensory Processing Disorder." Look here for more information.

As I have discussed in the past, I advocate a conservative approach to understanding these difficulties that people report. Unfortunately, there are some rather unscrupulous people in the world who have set up websites where you pay money to take a test and then they will tell you if you have "Sensory Processing Disorder." I won't link to those sites because I don't want to drive any traffic to them.

People who are having difficulties may be easily fooled by this kind of scam. It is a free world and if people want to pay money for Internet tests then I suppose that is their business - but I am also free to state that in my opinion sending money to get this "diagnosis" is a colossal waste of money and may actually divert people from seeking appropriate care from their doctors. If the people who made these online tests are therapists, and there is no evidence actually that they are, then they are also extraordinarily unethical.

That leaves you with some unknown people capitalizing off of the needs of others. To me, it is abhorrent behavior. Here is an email that someone just sent to me:

Hi,

I am "losing my mind" so to speak and think I may have sensory disorder.

I took a test online and had a high score on most items... what do you recommend as the next step for actual diagnosis?

Which type of doctor do I make appointment with? Or can OT administer testing without a doctor?

I am scared and confused and looking for help to point me in the right direction so I can get some relief. I currently see a family doctor for ADD and take meds but it's not helping...

Thank you for your time,

NAME REDACTED
I am sorry that people like this are wasting money on these unknown and online "Sensory Processing Diagnosticians." People who are experiencing difficulties should speak directly with their MD if they think that their current intervention plan and medications are not effective.

There are NO valid online tests for sensory processing difficulties. If people believe that they are having difficulties that interfere with daily life functioning they should speak to their MD who can refer them to an OT who will collaborate with the MD to develop an appropriate and evidence-based intervention plan.

For whoever is posting and profiteering from these online "tests" - you should be ashamed.

Comments

Anonymous said…
Hear, hear! And Amen!

Agreeing with you, Chris.

Barbara
8:11 PM
Anonymous said…
I have a question regarding sensory processing disorder. I do understand that this is a real disorder that can truly impact a person's daily life. Though the treatment approach is what confuses me. It seems like the treatment timeline is not very clear. Is a sensory processing disorder a lifetime disorder? Will a person always have to use sensory techniques to help cope with their sensory issues?
Thank you
12:24 AM
Christopher J. Alterio said…
Sometimes I wonder if these anonymous comments are just trolls but in the odd case that they are not I usually try to respond.

There is no such 'disorder' as sensory processing disorder. Some people may have some problems with processing sensory information, but we have very limited ability to measure this, very limited ability to know what interventions work best, and very little knowledge about the 'natural course' of the problem.

Talk to your MD before you label any of your own characteristics, traits, behavioral tendencies, etc. Not everything that people experience is necessarily a 'disorder' that requires therapy - especially since your identification of a 'lifetime' disorder could dangerously lead you to unnecessary and long term interventions.
3:28 PM
Anonymous said…
Thank you for your quick response. I am in the process of trying to understand sensory integration and sensory integration dysfunction as Jean Ayres describes. Therefore if my question was deemed troll like it is simply because I am in the early stages of comprehending SI.
I do understand the difficulty to measure and create norms based on how a person processes sensory info. I also can understand how if a person is not interpreting incoming sensory info ( for example body in space) then that might lead them to some balance concerns or in-coordination issues which will lead to difficulties participating in daily tasks.
Therefore in your opinion, generally speaking should treatment be focused on the root of the problem (sensory) or focus on compensatory techniques (balance/coordination activities)? It seems like there are so many clinics that specialize in SI though are unable to give clear answers.
Thank you so much for your thoughts.
2:07 PM
Christopher J. Alterio said…
Dear anonymous,

I apologize if I jumped the gun on wondering if your post was trolling - it is just that I spend so much time in this blog talking about what constitutes a 'disorder' that it surprises me a little when someone asks the question!

Anyway, your question is interesting. You are asking if intervention should focus on the ROOT of the problem (which you identify as 'sensory') or if it should be COMPENSATORY and work on balance and coordination activities.

The difficulty I am having with your question is that I don't really understand how working on balance and coordination is somehow not THE SAME AS working on the root sensory processing problem.

There are no external or non-medical interventions that can directly intervene at the biologic level - everything we do as therapists is an 'indirect' attempt at strengthening skill and ability through trial practice and training. Improvement might 'happen' because of whatever neurologic process is associated with 'learning' but we are not making statements like "by standing on one foot during this activity I am going to improve vestibular-proprioceptive processing by x% efficiency, thereby resulting in improved balance." That just doesn't make sense.

Instead we make our observations and goals at the functional level. On a 'theory' level we may believe that proprioceptive loading improves flow of sensory afferents, thereby facilitating improved awareness of body in space, but we don't KNOW those mechanisms so precisely - and that is why it is a little disingenuous to describe our intervention in these terms.

I am not sure if this helps or not.

I am very interested in being as clear as possible, but I can provide a much more clear answer if your questions were a little more clear itself. If you are interested, try asking again so I can really understand what it is that you are wanting to differentiate.

Thanks.
4:30 PM
Anonymous said…
My response to anonymous:

Any anonymous comment can be considered for troll-status in my book. If not troll, suspicious. Perhaps you really believe the opposite of Chris and want to try to make a point.

You refer to Jean Ayres (rest her soul). Her work was notable and important for opening the quest for treatment and understanding of many behaviors through an organic or neurological explanation. But. Her work is decades old now and has been superseded by volumes of basic research and as yet inconclusive behavioral research for isolating a diagnosis related to 'sensory processing'. I consider Chris a valid resource for interpreting the research that exists. If you check-out my blog (through my blogger profile) you can read my take on all things sensory - in about 15 different posts. Use the search box in the right column to find them.

Chris gave an excellent answer to your question. Movement is sensory experience that seems to modify (improve) behaviors interpreted as dysfunctional sensory processing. As to the 'root' of the problem - it is undoubtedly neurological and likely genetic. I suspect that SPD is a more acceptable term to parents who are struggling with their child having a diagnosis at all. Now that's a fairly strong statement but if you talk to parents of older children - they tend to cling less to pseudonyms for their child's problems.

Willing to state my name:
Barbara Boucher, PT, PhD, OT
8:00 AM
Silence said…
hhmmm , I am an adult in the middle of getting diagnostics done with an OT for Sensory issues, I do know one thing, with most of the symptoms just fighting your way thru it works very well if you have the energy... ie: crowd issues or what have you. It also means you have to study and know your self, weak and strong points...
7:13 PM
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