SPD/SID is questionable, with new DSM-5 publication.

Princess_Lily · June 2013

I'm not trying to start a "flame post" on SN, however I am simply playing "Devils Advocate."

Standing alone, without a co-morbidity Sensory Processing Disorder/Sensory Intergration Disfunction (SPD/SID) isn't (nor has it ever been) recognized as an official diagnosis by the standards of "The Diagnostic and Statistical Manual of Mental Disorders (DSM)" a manual which has been published by the American Psychiatric Association since 1952. DSM Version 5's (DSM-5) most recent publication came out on May 18th 2013. In addition, the American Association of Pediatrics (AAP) doesn't feel there is enough research to show that OT works for children with sensory difficulties.

Now while this is the case, I fully recognize that children seem to be more sensitive than others to certain environments, noises & textures. Many children may/may not also benefit from OT to help them cope with difficulties of accepting different experiences, especially when they are in their early childhood years.

Now I am a little bothered & upset by the recent findings. It has made me question the evaulation DS had.

Why are medical personnel giving out diagnoses to family and their children when officially, this dx doesn't even exist/isn't recognized?

Aren't sensitivity just that - a sensitivity? In younger children I could see how sensitivities will impact a child more so than another, however if the sensitivity is simply one which stands alone without a co-morbidity, I believe the child will learn to cope as they mature with age.

I was not even informed by the therapists who conducted said DS' evaluation, of the little details, that the diagnosis isn't even official. When I have questioned them in recent weeks about this, they give me "grey answers"...they don't discuss the DSM-5 or AAP information.

I spent almost a full year informing DS' caretakers about DS diagnosis of SPD/SID, however with recent developments I now have to inform them that DS is simply more sensitive to certain things than others.

~~~~~~

Regarding AAP & SPD/SID (Published: June 1, 2012)

https://www.medpagetoday.com/Pediatrics/GeneralPediatrics/33018

curlylocks007 · June 2013

I find all of this quite upsetting given the fact that a CHOP Developmental Pediatrician diagnosed my son with Sensory Modulation Dysfunction two weeks ago. Not sure why a place like CHOP would be handing out a diagnosis that is no longer recognized...

funchicken · June 2013

Not trying to be snarky, but this isn't news to me. Lots of pediatricians don't believe that SPD is real. I believe it is. Thankfully, my pedi believes it, too. The dev. pedi said they don't call it SPD, but it is real. I'm sure a lot of people think it sounds made up. A lot of people don't think food allergies are serious, and they think people who have them are faking. Whatever. "Real diagnosis" or not, I'm just going to keep doing what I think is best for my kid.

Our OT has a master's degree, and she seriously rocks. That's all I have to say about it

Princess_Lily · June 2013

Auntie,

The OT will stonewall my questioning saying that DS has SPD with no comorbidity even though to people who know him since birth see's he has "grown out" of the difficulties that presented themselves from birth, and aap doesnt recognize spd after 3yo.

To me the stonewalling of me is annoying and unprofessional.

DS's pedi looks at the sensitivities as a quirk...which personally DH and I agree with. The pedi has known him since birth and see's DS sensitivities are almost all gone.

Seems like there are people who feel spd is a disorder, and others who see spd as a "sensitivity" quirk. We see it as a quirk, however feel that both spd and "sensitive" kids can still benefit from the same advice/discussions from parents since they cross over eachother in some symptoms .

Also, I mean "american academy," woops!

Rachel Sonnier · June 2013

I am really interested in this. I had this same discussion with my son's OT yesterday, but for different reasons. We discussed the DSMV openly and she said she that they are all hoping that it will be included in the next revision, because they really believe that it should be recognized. If your OT is unwilling to discuss this with you, I think you might have a bad OT. If you feel as though your son was misdiagnosed, that is totally possible, but that doesn't mean that every child with SPD is just sensitive. My son is actually not sensitive at all, as in he doesn't feel much of anything. Personally, I tend to feel as though not feeling pain isn't just a personality quirk, although it seems that your son has different issues, so I can see it from your POV as well. What I was trying to glean from my son's OT, is that if SPD supposedly isn't real, why can't my son use his hands like a typical child? They are now saying that it isn't dyspraxia, so what else could it be? I think we are at the point where we need to see a neurologist, because the OT is saying its SPD and so many professionals don't even recognizes SPD. So, I get how you are concerned with this issue, because I am as well, but on a different level.
Like Auntie mentioned, about it rarely being a stand alone dx, he does have CAS also, but his first dx was SPD, and supposedly that is what is causing his fine motor delays, which affect his daily life tremendously. If anyone else has any thoughts on this, I would love to hear them. I don't feel as though I know enough about it, and the literature has so much overlap. I don't know if any of you have read this journal article regarding the research done with EEGs of NT kids and kids with an SPD dx, but its really interesting. I don't know how to make it clicky, but this is the link to it:
https://ajot.aotapress.net/content/65/4/370.full?relatedurls=yeslegid=ajot;65/4/370

kcisthebombdotcom · June 2013

I can understand why the aap would not be able to endorse ot. From what I understand the research is limited at best. It's not like there's been large scale studies replicated numerous times. It doesn't necessarily mean there isn't some worth to ot based therapies.

lm sad this info will deter parents away from ot. It's noninvasive. It's not drugging your kid. It's free through the avenue of ei anyway. My kids had sensory issues so intense it was greatly hindering development. They were in this sense of continual dysregulation that they could not focus on anything, could not attend to directions, etc. speech therapy was all but worthless until we utilized ot strategies. I believe that eventually their nervous systems would mature some and they'd develop appropriate coping strategies. I would imagine they would start kindie at a great disadvantage to their peers. I know kids are resilient and there's a good chance that eventually they'd catch up, but why wouldn't a parent want to intervene in the early years to try and level the playing field?

I also understand its not recognized as a stand alone diagnosis. I do think lots of kids with sensory issues will go on to have diagnoses of things like ADHD later in childhood. I think that if that is true with one/both of my kids in the future therapies which have greatly improved their attention span will be nothing but helpful.

mommytoconnor · June 2013

My son has been diagnosed with SPD for more than a year now and I know it isn't "recognized" on the DSM. I will also disagree that it is a "quirk" and my son is not "sensitive", he actually doesn't feel a lot of things. I had him in OT for a year and saw immense improvement. He is followed by a developmental pediatrician who is thru Barrows Neurological institute who are some of the leaders in neuro develop issues. They believe his is an actual condition, just like ADHD, ASD. I do believe that there are typically other things along with SPD, for example my son has a language delay as well. However, I also believe there may be some kids who don't necessarily have ASD or ADHD along with SPD. I think those people who don't "recognize" it as a diagnosis, aren't fully educated on it and haven't seen SPD kids improve with the recommended therapies of OT. I live this everyday and everyone who has ever seen my kid and evaluated him agree that he has SPD and speech delay. I choode to agree, and I have read every freaking book and study about it that I can find and have become very educated on it myself. I will continue to be proactive for my son and get him whatever services are needed for him to improve, which he has and I don't really care who "recognizes" his diagnosis. I think the big problem is going to be for parents tryng to get services for their LO and can't because it isn't a DSM IV diagnosis.

Rachel Sonnier · June 2013

mommytoconnor:
I think the big problem is going to be for parents tryng to get services for their LO and can't because it isn't a DSM IV diagnosis.

This is the main issue that I am concerned with. Not so much the services, because we can always get private therapy (which is what we do now), but from what I understand, in my state you need a dx to get certain accommodations/modifications in the classroom. What do you do if your school board/administrators/teachers won't accept the SPD dx and yet your child still needs accommodations to be successful in a classroom setting?

mommytoconnor · June 2013

Rachel Sonnier:
mommytoconnor:

I think the big problem is going to be for parents tryng to get services for their LO and can't because it isn't a DSM IV diagnosis.

This is the main issue that I am concerned with. Not so much the services, because we can always get private therapy (which is what we do now), but from what I understand, in my state you need a dx to get certain accommodations/modifications in the classroom. What do you do if your school board/administrators/teachers won't accept the SPD dx and yet your child still needs accommodations to be successful in a classroom setting?

I am very concerned about this too. For my son I have been able to get private services, but I have been fortunate. Honestly, because it isn't a "recognized" dx, insurance companies can deny services, and if you can't afford to pay cash then your child misses out on them. Schools don't have to accept the SPD dx either. For example, my son doesn't qualify on the SPD dx but does because of his speech delay. I can see that this could be a real problem for a lot of kids and that concerns me a great deal. As I said, I have seen immense improvement in my son with therapies. Honestly, without those therapies I don't think he would be where he is today. I thank my lucky stars that I was persistent and pushed for therapies and stuck with it as long as needed. I live with SPD everyday and can vouch for how important early diagnosis and intervention is needed for this very "real" problem.

Rachel Sonnier · June 2013

Thanks for all of this info! I figured some of you ladies would know how it all works. I taught 5th grade, so I have been on a few IEP teams and present at IEP meetings to discuss goals, etc, but all of my kids had established IEPs with no real issues, by the time they came my way, so it really wasn't anything more than carrying out their established accommodations in the classroom.

Auntie, can physical delays be the basis for an educational need? My little guy is very delayed in fine motor (about 3 years, and he is 4) and still using a palmer grasp on crayons, markers, etc. and cannot reproduce any shapes. He has no hand preference and issues crossing the midline. He has a great deal of trouble cutting with scissors and doing simple things, so his frustration level is super high when it comes to these types of tasks. Just using eating utensils is a challenge for him, so that is my main concern. His OT was initially saying she suspected dyspraxia, but later said that his planning seems to be ok, but that he just can't physically carry out the tasks, because of the weakness/lack of feeling in his hands. She says its all a result of the SPD. I don't know if this is the case, but I was very fearful that SPD being unrecognized by many, would make it easier for his teachers not to help him. Knowing his level of frustration, this would lead to behavior issues, and we have dealt with this in a daycare setting pre-dx. I know that I probably shouldn't be so worried, because with or without a dx, any decent person would be willing to help a little kid who has trouble using their hands, right?? At least, I hope so.

Rachel Sonnier · June 2013

Thank you so much, Auntie!! I really appreciate the info. This is all so hard to navigate sometimes. I am so thankful that I found this board. You are all so helpful.

macchiatto · June 2013

Fascinating thread!
DS's OT during his initial Early Intervention evals said he had moderate SPD, though she said she couldn't officially Dx it. A year later he went through developmental pedi evals and she did say he had SID (along with hypotonia, developmental coordination D/O, anxiety, and mild perseverations) though I believe in the report she listed it as a "definite difference in sensory processing" or something rather than a named Dx. I'm not sure what to think about it all or how it all relates. I do wish there would be more research on SPD but that's interesting to hear it's so rarely a stand-alone Dx.

doodlemonkey22 · June 2013

Hello. I'm new to this board and am slowly reading old posts. This one caught my eye because it is about SPD. I read one of auntie's replies that SPD is not usually a stand alone dx and that she doesn't know of any. I laughed a little because so far my son has a stand alone dx of SPD. He's 4 almost 5. No other diagnosis so far but it is kinda like waiting for the other shoe to drop. Wondering when and if something else will come along. I truly do feel like the SPD dx was accurate and not just son being quirky. OT has helped a lot. I don't think DS would have outgrown issues without OT. Not that OT has magically healed his SPD issues. They're still there but understanding helps. So glad I found this board and looking forward to learning from other moms on this board.

mommytoconnor · June 2013

doodlemonkey22:
Hello. I'm new to this board and am slowly reading old posts. This one caught my eye because it is about SPD. I read one of auntie's replies that SPD is not usually a stand alone dx and that she doesn't know of any. I laughed a little because so far my son has a stand alone dx of SPD. He's 4 almost 5. No other diagnosis so far but it is kinda like waiting for the other shoe to drop. Wondering when and if something else will come along. I truly do feel like the SPD dx was accurate and not just son being quirky. OT has helped a lot. I don't think DS would have outgrown issues without OT. Not that OT has magically healed his SPD issues. They're still there but understanding helps. So glad I found this board and looking forward to learning from other moms on this board.

I totally agree, my son also has SPD as a stand alone diagnosis. He has been seen by numerous specialists from neuro, child psychologist, child behaviorist, devel peds, ST,OT,PT, etc. All come to the same conclusion SPD. Now that I understand SPD it all fits. I know my son would not have "outgrown" his issues without help of OT. OT hasn't healed my son but given us guidelines and education as to what SPD is and what I can do for my son to help him. I have seen a huge improvement. Welcome to the board.

Brewtowngrl · June 2013

Getting caught up. I am also in the boat of frustrated that is isn't recognized. DS will not grow out of his SPD. He has no ability to get dizzy. This causes a lot of seeking to get that stimulation that most of us feel naturally. He does not have a stand alone Dx, but it is a major factor in his life. We are lucky that we have private OT and the school district is on board with us. I also got a medical grant to help with the cost of OT.

mommytoconnor · June 2013

-auntie-:

doodlemonkey22:
I laughed a little because so far my son has a stand alone dx of SPD. He's 4 almost 5. No other diagnosis so far but it is kinda like waiting for the other shoe to drop. Wondering when and if something else will come along. I truly do feel like the SPD dx was accurate and not just son being quirky. OT has helped a lot. I don't think DS would have outgrown issues without OT. Not that OT has magically healed his SPD issues.

Sometimes I feel a bit like I'm pissing on people's cornflakes. I'm sorry to be the old timer who causes anxiety, but it's what I see. I also see a lot of parents and OTs who parse every behavior through the lens of SPD and miss out on more effective strategies for the things that usually come with.

I can understand what you mean about OT's just saying everything is SPD related when there may be something else going on. Thats where you hope you have a really good OT who is familiar with not only SPD, but ASD, ADHD, etc. However, there are kids who do strictly have a stand alone diagnosis of SPD at the current time. I do agree that some kids may develop ADHD, or something else, but I also think that some kids diagnosed as ADHD could be SPD and are not necessarily getting appropriate treatment because they are lumped into ADHD category. In my learning of SPD 1 in 20 kids is affected by sensory issues of some sort. Most are undiagnosed or misdiagnosed. We all have sensory things we prefer or dislike, but we can regulate ourselves, whereas SPD kids have difficulty. And don't think of it as pissing on our cornflakes, it's what you see, just like we post what our experiences are. We all share and that's what makes this board so great, we can support and maybe help others along the way.

FWIW, my son and sister didn't have a dx at 5 either. By 7, he was dx'd with ADHD and ASD, specific LD by age 8. By 8 she was dx'd with ADHD/gifted and by around 14 she was dx'd with bipolar.

A lot of kids and adults I know with SPD also have ADHD issues. I know that I do not process sensory input like most people going back to the time I was a toddler. I have hypersensitive hearing, I wear sunglasses outside on all but the dreariest days, I was pretty particular as a little kid about what I would wear, etc. But I was blessed with a strong ability to self-regulate- even as a toddler I was the kind of kid who could be taken anywhere because I was remarkably well behaved. I wonder if I would meet the criteria today but fly below the radar because I didn't carry on because I didn't have ADHD and the delays in self regulation my sister and son had at the same age.

Does that make sense?

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SPD/SID is questionable, with new DSM-5 publication.

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