This chapter of The Mislabeled Child left me wondering: which label is better for a child like Brad - severe SPD or mild PDD? Brad is so borderline that either label probably fits. Answer: they both suck! No, really, they do. But which sucks more? Consider the following:
Heterogeneity: PDD-NOS can describe anything under the sun, from the severe to the mild end of the autistic spectrum. SPD, likewise, can describe a child whose symptoms mostly present as emotional dysregulation with no cognitive difficulties to children like Brad who are autistic-like (or what have you). Winner: tie, they both suck.
Respect by schools: here, the edge goes to PDD-NOS. The schools don't respect SPD as a diagnosis because it's not formally recognized in the DSM-IV. Winner: PDD!
Ill-conceived notions for treatment: As I learned firsthand, the prescription for treatment for PDD is ABA, and not just ABA, but intensive 25-hour per week ABA. SPD has some weakness in this area too: people have the preconceived notion that SPD kids don't like tags, bright lights and loud noises. (As I blogged, Brad doesn't have an issue with any of these things; on the contrary, he needs more than average stimulation to reach an ordinary state of arousal.) That having been said, I'll take dim lights for Brad (which he doesn't need) over ABA, thankyouverymuch. Winner: SPD!
Diagnostics: PDD-NOS is widely diagnosed by a whole host of professionals, including developmental pediatricians, psychologists and neurologists. SPD? I don't even know. The Eides diagnose it. Occupational therapists diagnose it. Who else? Anyone? Winner: PDD!
Overall: I give the edge to PDD over SPD. What say you, readers?
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A Man After My Own Heart
1 hour ago
22 comments:
I say my head is spinning. I hate labels! HA! No, really, I go with PDD because I truly believe that a child with any of these issues, albeit mild, needs a multifaceted approach. SPD doesn't give them that, IMO. I am LOVING some OT help.... but it does nothing for some of the other issues.
It is interesting to to me that according to another of your posts that SPD is commonly seen in children with PDD or Autism. However ABA, usually the prescribed "treatment", does not recognize SPD as valid. They do not support any kind of sensory diet or allow stimming which is an attempt to regulate stimulation. What are your thoughts on this contradiction?
Labels suck but they are necessary to get services in schools unfortunately : (
LBJ2YO - interesting thing about Mislabeled Child: the opening passages of the SPD chapter describe what may be the E profile: early reader (by age 3), bright, seemingly typical-ish until he started kindie, at which time he had all sorts of behavior issues (which the Eides attribute to "fight or flight response" caused by sensory defensiveness, a phenomenom I've never seen in Brad).
Queenbuv3 - I'm far from the authority on this but anecdotally I've heard of "good ABA" and "bad ABA" - bad ABA being a pure data/behavior model lacking intuition, good ABA being more progressive, playbased, organic and integrating principles of OT.
I have read "The Mislabeled Child" and loved the chapters on Autism and SPD. Alec also mirrors, constantly shows me things, points things out, etc so per TMC, he is not autistic.
However, there are days when all he wants to do is jump. His play is ALL gross motor and often seems to have no point; it is lacking in imagination. He has social skill deficits, hmm...could it be all that jumping?? He doesn't have a lot of interest in his peers. His language is at least a year behind. These symptoms make him look autistic. He is definitely Autistic-like. In fact, one dev ped gave him a dx of HFA. Two subsequent examiners gave him the dx of ADHD and noted "sensory seeking behaviors seen" - neither one (a psychologist and a neuropsycholgist) willing to diagnose SPD. Both said to consult an OT. According to the neuropsych at Kennedy Krieger, "Amost all 'these kids' have sensory issues". She clearly wasn't buying that it is a stand-alone dx.
I was told the reasons PDD/autism did not fit Alec was b/c his language problems were in expressive language only- specifically "rapid naming" (show him a cup and it takes him longer than normal to say "cup") and not in social use of language and that he does demonstrate "reciprocal social interest". He is also not rigid, he is fairly easy-going unless he has to sit still for a long period!
I was even told quite candidly that his interactions with above examiners were "warm", "engaging" and "quite social in nature", unlike the kids they see with ASD.
Very fine line??? You bet!
Is it hard to get him services?? YES! I am fighting hard for an IEP.
I think SPD is a less "scary" dx but in the end, many of the problems are the same and the outcomes may be the same too. PDD/autism gets more attention and help. You're right, they both suck! I am not of the camp that believes "that's just who he is and I wouldn't change a thing" - I think it sucks and is robbing my son of a normal life. I know many do not agree with this outlook.
I think SPD should be on the spectrum; I think there are kids whose main issues are sensory. I think Alec is on the spectrum. Some would have ADHD put on the spectrum as well. Here I disagree. My oldest son has only ADHD and while related in some ways, the deficits are of a different nature entirely. This child has tons of friends, a great, rich imagination and many varied interests but he is impulsive, disorganized, often "out to lunch" and as a younger child extremely hyperactive. I have no doubt he will have a full, productive life. I can't say the same about Alec. Just my opinion - not that anyone is asking!
Great post as usual!
Geez. Now I'm going to have to read that book. Darn you. [just kidding of course ;)]
I am in this discovery mode recently. I haven't blogged about it, because to tell you the truth, I am just physically and emotionally exhausted.
But, it is interesting.
A year ago, I had to fight to get him what he needed. I fought labels. I fought therapists who didn't see the need. I fought because I KNEW there was something different, something that needed help - but it wasn't obvious.
Now, I don't have to be any part of these evaluations. He shows them what they need. It is obvious.
I have always known and always been TOLD that the increase in demands will beget the increase in behaviors. What truth! I have witnessed it with my own eyes.
I have no denial in his place on the spectrum, anymore. He is not in such a grey area any more. He isn't 'classic' whatever 'classic' is.... he's got the laughter, he's still got the eye contact, he's gaining skills, he talks. But, I am so far away from the *IS IT*, *ISN'T IT* question now... it isn't funny.
I think while some kids grow closer to the grey area, some kids grow closer to the rainbow of colors.... the spectrum of colors. That's where ALBJ2YO is.
I think preschool is a MUST!
I think kindergarten will be interesting, but I look forward to all the help we can facilitate between now and then. I am grateful for 'labels' only because it has helped me find a group of professionals who help me help him.
IMO, It's going to get worse.... and then it's going to get better.
Sorry for TOTALLY venting on your blog. Guess I needed it. I guarantee a new blog soon now ;-)
What's interesting is how much the symptoms and labels overlap. There just never seems to be one thing that you can say, "Oh THIS make it PDD" or "not PDD."
The PDD label gets you more services, that's for sure. But I think the SPD label, if given by the right person, gets you more appropriate therapy.
I know people who's kids have the PDD label and they are not in any kind of OT for SPD, although they definitely have SPD issues similar to Charlotte's. They figure they are getting OT at school and that's enough. I disagree.
I would say possibly the biggest difference (if even a difference) is I believe SPD can be overcome. It does not have to be a chronic, life-long, or even childhood-long, issue.
If a child is definitely PDD - maybe it is more likely to be life-long or be an issue longer??? Maybe??
Maybe they should come up with a Dx label called Developmental Autism. Question is - how do you know who is going to develop out of it, and who isn't?
Perhaps those that fall into our little gray area could get that label wherein they get all the recommended services needed, with the possibility that they will lose the label later, i.e. not NEED it later. Meaning, it won't apply.
Rather than take a 'wait and see' approach, your child is Dx'd "Developmental Autism" meaning showing signs but no telling level of progress possible. An ongoing therapeutic and evaluative process. I think THAT would be sooo much easier for many of us parents to swallow.
Darn this was a long comment. :-)
Kris: *nods* uh-huh, sounds familiar. Your journey has had a lot of twists and turns. After a while, it's like, it is what it is, whatever you call it.
ALBJ2YO, that's a change, in you and in E. It wasn't that long ago that both of us were in the is-he-or-isn't-he stage. And vent away, chica, especially when you're on a roll!
goodfountain, I like your dx idea, and I think it makes perfect sense. Unforch, the research community is going in the exact opposite direction, affirming the grow-out-of-it group as autistic and targeting them for more, not less, of the wrong kind of services. oh yeah, here she goes again, right? *puts muzzle on own mouth*
They can affirm the grow-out-of-it group as Autistic, but then people need to stop asking the "Where are all the adults with Autism?" question. Maybe a large number of people who are adults now who would have been Dx'd as a kid are managing just fine in life with no accommodations or services (a little rant of mine, sorry).
PDD. Because you often see SPD in PDD. But maybe not PDD in SPD? Say that 10 times fast.
Drs. Greenspan and Wieder, the folks who brought us Floortime, produced their own diagnostic manual last year (The Interdisciplinary Council on Developmental and Learning Disorders Diagnostic Manual for Infants and Young Children) and it includes their own version of SPD, called regulatory-sensory processing disorder. I googled this and got a few hits, so I guess it's gaining some traction.
I do resent the vague and nondescritive labels because I continue to feel that without a good understanding of what is going on biologically, it is really just about impossible to logically decide what to do. I realize that to a large extent the science just isn't there yet, but it is frustrating because I can't help but feel that most of the professionals just aren't really focused on trying to get us the precision that we need to actually help our children. My son is only 2, so I am under this enormous pressure to hurry up and rewire his brain or whatever. Fine, so ABA is the only evidence-based treatment. Well, maybe if you have classic autism. Does he? I dunno. If PDD-NOS is just part of a spectrum, and if there really is such a thing as "regressive autism," which as far as I can tell now everyone concedes there is, and if it really is an autoimmune disorder which some people who seem pretty smart seem to think it is, and if my son has all of this ... then ??? argh. you know? And can I just throw in, what about the constipation and the non-sleeping? Does everyone else experience that too???? I just really, really, really want to know what is going on in there.
Nyx, oh, I can so relate. It is beyond frustrating. Agonizing. Ug is right. I might even use an expletive. What you really need is some one on your son's team who gets your son and understands this stuff. For me, my trusted advisor was Brad's speech language pathologist. It should have been Brad's developmental pediatrician, but sadly, she really had an un-nuanced understanding and prescription for treatment which turned out to be beyond useless. Brad's speech language pathologist really understood Brad and vehemently advocated for Floortime.
If you don't have some one on your team who can lead you through this, I would recommend shaking things up team-wise. Does YOUR insurance cover OT? If so, interview private OTs and find out if any in your area practice floortime. I think Greenspan's website has a list of "certified" OTs and SLPs, by geography. Get some one like that on your son's team.
"regressive autism" is a loaded term - I think the consensus is that regression happens BEFORE, not after, age 2, unless it's CDD which is an entirely different thing and there's almost no way a pediatrician would blow by that - you'd know it if your child had CDD.
re constipation - check, yes, mild, relieved entirely when we added double fiber bread. Sleep disturbance - not at all on our end but I would definitely raise with your son's doc, pediatrician and/or specialist.
Good luck.
ps -- quackwatch actually has an article on spd. I think that's a shame, and I must say that I used to think a lot of that website, but I see now that they have fallen into that common trap of thinking that if they can't understand something and no one has proven it, then it must not be true. It's funny to me the way that people have no idea how when they don't actually no the answer to a question, they just invent a "burden of proof" which they use to magically answer the question. That's what modern medicine does with everything. First they start with whatever model they learned in medical school, or whatever the CDC or someone reputable-seeming tells them, then they require all competing theories to satisfy a beyond a reasonable doubt standard. I exaggerate of course, but you get my point.
ew, I misspelled know. I really need some sleep.
Thanks for the great info. We are pursuing Floortime for sure. We are finally seeing the Floortime slp for first time thurs, and we are lucky because everyone agrees she is awesome. my insurance ... covers ot "under the supervision of a physician," which means we have to see the doctor really often and the doctor has to review the ot's notes. doesn't sound so bad, except that I have a COBRA conversion policy which has a $1000 monthly premium, a $5000 deductible, and is 100% out of pocket reimbursement. I still theoretically come out ahead to keep the policy but only if I can cough up the dough to pay the therapist. In my efforts to stay home with the twins, I maxed out all credit cards. I only work 15 hours per week which with husband's income ... ALMOST gets us by. The firm will let me come back full time in which case money problems disappear but then so does Mommy. I have felt so far any way that my son responds best to me but maybe it is time to start thinking about going back to work and sending them to preschool. But preschool won't be cheap, and I have 2. Anyway, that is more information than you wanted I'm sure. Point is, your advice is quite well taken, but I can't decide how to apply it. Part of my own journey the last few months is to finally admit that I almost certainly have ADHD. If that's a thing.
LOL
So that's it!
In terms of the work/life balance, I totally feel for you. Can you go back 60% and get benefits? Are your skills transferable outside of law firms? I added my email addy to my profile btw - feel free to email me to chat.
It is hard for me to choose, quite honestly. While SPD has all of the weaknesses you mentioned, there seems to be less stigma associated with it (at least in my experience). Whenever I say Asperger's or The Boy is an Aspie, I have to rattle off all the reasons why I don't think it was vaccines that caused it, why I'm not doing a gluten free/casein free diet, and bunch of other stuff. It's tiresome!
As always, I enjoy your posts!
Nyx, I was told my son has a "regulatory disorder" by a psychologist. I was told this term is used for kids who have trouble regulating their sleeping, have trouble processing sensory information, are inattentive, hyperactive, etc - all the things that go along with ADHD, SPD, ASD. To me it was just one more "disorder" to add to the file and one that may be accurate but won't help him get the services he needs at school. It would be nice if there could be some consensus on all of this.
Hi. Sorry about opening up an old topic, but I couldn't resist replying to Nyx. Yes, my 10yo son has constant constipation and just won't go to bed at nighttime!
We have only just found out about SPD from an OT and jeez does it fit. (The brushing even seems to be helping with his constipation).
I will be talking to his psychologist tomorrow and making sure he also gets assessed for PDD as well. We were told he was "spectrumy" a few years ago, but have not had a definite diagnosis. Asperger's and ODD were suggested but didn't make sense.
I hate labels too, but we are running out of time to get him the assistance he needs. School has been a disaster most of the time, but there have been some good years. Why hasn't anyone made this connection about his condition before??? ... Aaarrgh!
Hi, father of four, I'm so sorry about your experience. I will say that I have had some progress on the constipation front. Laura said she had some success with double fiber bread, and so I tried that as well as All-Bran cereal, which reminded me of that old Saturday Night Live sketch about colon blow, LOL. It worked awfully well. However, I have to tell you that it still bothered me that he needed that because he was already eating a very fiber-rich diet when he was getting constipated, and I have to say that I am reasonably certain now that dairy was a major culprit. When I eliminated dairy totally from his diet, I found that we didn't need all that extra wheat bran. While I haven't gone totally gluten-free, I have experimented because my grandmother had celiac disease and it runs in families, and while the jury is still out, it appears that actually the gluten may just have had some negative impact on his situation. I'm not sure about that yet. But the dairy is ... pretty much beyond question. He no longer lies down on the floor to go poo poo since I took him off dairy, so dairy-free we are. which stinks. I really miss ice cream and cheese. My children are only 2 but I heartily recommend the book Mislabeled Child to you.
Hi Nyx. Thank you so much for responding. We have had a very good day today so I am hopeful that we are finally on the right track. The occupational therapy is making a big difference and his appetite has improved since we took him off his meds for ADHD. We haven't had much success with diet and he is such a fussy eater that I am loathe to exclude things. I'm pleased to hear this is working for you. I am reading the Out of Sync child now, which makes a lot of sense for us, and will get to The Mislabelled Child next. Thanks for the recommendation.
Hey, just noticed this thread was just opened. Welcome, Father of Four. Education seems like such a challenge. Understatement of the year. Nyx, my oldest is anaphalactic allergic to milk and egg, so I know how challenging elimination diets can be. Fortunately, Jeremy has been allergic all of his life so never acquired a taste for things like mac and cheese, pizza, nuggets, etc. He mostly subsists on whole foods. I could never get away with that with Brad.
Cheers Laura. My poor, confused wife cannot believe that I am now encouraging chewing gum, smoothies and all sorts of other stuff as part of his sensory diet after years of trying to eliminate most "junk food". The other three kids are really appreciating this too. Our youngest gets eczema if he has too much dairy, but otherwise this doesn't seem to be a big problem for us. If only we could get them to put all the wrappers, etc in the bin and not leave rubbish all over the place! I think we will be spending a bit of time at the school in coming weeks...
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