About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Friday, October 16, 2009

Prevalence of Prevalence Statistics

In the wake of the recently published autism prevalence statistics, comes Behind the Autism Statistics, by the producer of Autistic-Like: Graham's Story. Behind the Autism Statistics is an insightful editorial, and I could relate to chunks of it from a parenting perspective, particularly being pushed into ABA and feeling as though it were a bad fit.

What struck me as I was reading it was this little gem:
A central goal of the SPD Foundation is to ensure that the disorder [sensory processing disorder], now estimated to affect as many as 1 in 20 children, is included in the DSM-V, which would turn it into an official diagnosis that would come with much-needed help.
Irony alert! An editorial that criticizes the establishment for distorting autism prevalence, suggests that the SPD net may be cast at 1 in 20.

From a parenting perspective, I've arrived at a place where I am fully at peace with the blurriness of the lines. I believe that "autistic-like" SPD is distinguishable from autism, if at all, in degree-only. And degree is not for nothing. Degree can be the difference between talking and not talking, and dependence and independence. I don't minimize the significance of degree. I just question the need for a new, potentially ill-defined label.

If treatment is the issue, and I share this concern, then why not lobby to reform the prescription for treatment of autism?

16 comments:

Kris said...

Wow, how very well said! I completely agree! After a over a year of trying to find a dx that "fits" Alec (SPD comes closest), I have found I don't really care anymore. If ASD gets him his IEP, he has ASD. If SPD gets him his OT, he has SPD. It really is a question of degree and perhaps "pattern" of symptoms. I too have looked at the SPD "1 in 20" statistic and thought "What????" 1 in 20 kids are not as affected as Alec, that's for sure!
Thanks for another great post.

Nyx said...

The more I read about how typical children develop, the more obvious it becomes that problems with the senses are of course going to interfere with communication and social development. I think you will find this recent article, which among other things discusses the prevalence of autism among congentically blind children, of interest: "Joint attention provides clues to autism and cooperation." Something else interesting: I personally have had problems with my focusing muscles since I was a teenager. I had better than perfect vision, except that after a day of reading, I would start to get blurry vision and headaches, because my muscles couldn't keep up. After reading for a while, when I look up, everything is blurry. You know what I am wondering this afternoon? Is it just possible that my son's eyes don't adjust? That if he's looking at a book, he CAN'T look up at me and see. Kind of hard to develop joint attention, don't you think, if your eyes can't adjust?

JD in TLH said...

I realized something was not right with our son when I stepped in as a substitute for his teacher one day at his "mother's morning out" program. I watched him with 5 other kids, ages 2-4 (he was 3 at the time), and it dawned on me within 30 minutes that he was woefully behind in speech and was not typical in many behaviors.

His pediatrician referred us to the only pediatric neurologist in town who told us that "for the purpose of a working diagnosis, we'll have to call it autism", this after spending 25 minutes looking at him. I replied, "what do you mean, "HAVE to call it autism"?" He said, "Really, it is just semantics". I was getting angry at this point. "With all due respect, as his parent, it is NOT just semantics. What is your professional opinion of what we are dealing with?" "OCD with dyspraxia, but if you want to get him services in the local schools, we will HAVE to call it autism".

When I brought this conversation up with his pediatrician, the pediatrician demurred. "Look, it's true. The only way to get services is with an autism diagnosis. The only people who are bothered with the label is you. If you don't want to label him, then don't. The bottom line is that he will need speech therapy, maybe OT, regardless of what we call it. It's possible that when he is older, he won't need that label anymore. But until then, we need that label to get him help."

The system is broken, we can't call a spade a spade; heck, we can't even agree on what a spade is!

P.S. He is four now and in a mainstream preK (which, of course, he qualified for b/c of his "autism" dx). His speech is improving, but the OCD behaviors are vexing us to no end.

Nyx said...

I just read this article: A Parallel and Distributed Processing Model of Joint Attention, Social-Cognition and Autism, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2715157/?tool=pubmed, and wow. I mean, really, just wow. I only understood about half of it, and yet still, suddenly, a LOT of things make sense. sort of.

Patience said...

I haven't posted on this blog awhile but I have a question. If a child is dx'd with autism; doesn't that have an impact on their abilty to get adequate health care/insurance in the future?
We're Canadian but when my dh was once looking into a job in the US; we were told that our dd with the ASD dx couldn't get coverage because she had a "pre existing condition"
Also how easy is it to get rid of the dx in the future; it's been pretty hard with dd (we had it removed from her school files) as professionals seem to view your child with ASD coloured lenses once they have the dx.

Laura said...

Kris, thanks, yeah I don't know what 1 in 20 represents.

Nyx, I skimmed the link. Ambitious publication. Interesting. I wonder about the implications for treatment. btw you can drive yourself crazy analyzing joint attention, initiated and receptive and what have you.

JD in TLH - the only thing that seems to be consistent, in terms of dx stories, is the inconsistency. Brad's doctor may or not have had an agenda, but if she did, she didn't share it with me, as in she never said anything to the effect of "this is a label for services." On the contrary, she was very intent on getting me out of the throes of denial.

Patience, loaded question. In 1996, under the Clinton administration, the law changed such that now insurers can only impose a pre-existing condition limitation for up to 12 months (offset by previous periods of "creditable coverage"). Obama, at one point, proposed to prohibit preexisting condition limitations all together, and health care reform is under way here in the states. So the situation is fluid. It depends on what passes.

Nyx said...

Laura, you are sure right because I have ALREADY driven myself crazy with it. HOWEVER, what I have found that is REALLY interesting is the stuff on joint attention with blind infants, who obviously cannot use vision to share attention or more importantly to EVIDENCE shared attention. Instead, they use touch and sound. Now, if our children have visual processing issues ... any of the "experts" you talk to even bother to examine or discuss the possibility that your child was sharing attention with you in some way other than gaze? I'll bet not. My son DOES share attention with me without gaze and it is evidenced by our conversations. Not that there isn't still an issue there, but I think that some of these people are using an inappropriately limited model to both look for -- AND REMEDIATE -- joint attention problems. What do you think they would recommend if he were blind? Let's throw in auditory issues, now. I think that joint attention IS important, but trying to force "typical" joint attention and failing to notice and reinforce alternate forms is a major problem. I just don't understand why no one is addressing the fact that so many of these children have impaired vision and hearing and crafting their interventions appropriately?

rhemashope said...

Your statement that you are at peace with the blurriness of lines really jumped out at me. It seems like so many are not... Anyway, I just really appreciate your perspective.

Shirin's Art said...

hi
joined your blog sometime agao...and i must say i really like your views and your vast knowledge on autism.Lord knows how much i truely need all this info on autism.
Back in Jakarta indonesia ,where i live,the diagnosis given to every child below the age of 3 is PDD-NOS. aside of course from the obvious ie cp and downs.When my son was diagnosed w PDD-NOS at the age of 23 months,i asaked the doctor if that was autism to which he answered..."MAYBE it is".I was left with utter confusion...what does my son have then?Then he said..."what ever it is,it might just go away at the age of 3 and who knows it may be nothing?"It got me even more confused...A friend of mine also about my son's age at the time was also diagnosed with PDD-NOS...though it seemed so much like ADHD.my son is 3 now.I don't know wat is his final diagnosis goin to be.Is it autism..i think it is..wat ever it is is here to stay with my son.But lets see what the doctor has to say.

Laura said...

Nyx, I think they do though, at least nominally. At least Floortime advocates integrating OT into the floortime session. As for vision, I think it's related to procieptive/vestibular, as in sensory integration, not just vision? There is a study that found improved eye contact while ASD control group was on a swing. Both ABA and Floortime call for use of swings and elevated surfaces, etc. Anyway, just guessing.

rhemashope, thanks...

shirin's art, hi, thanks for the note, and welcome. I guess no matter where you are, it's confusing!

Emily said...

Hi, lurker here, but may I comment?

There are people who have sensory processing problems that severely impact their life (prevent them from driving, for instance), but don't have a lot of the symptoms of autism or Asperger's. (And those that they do have, as Nyx said, can be explained by things like being visually overstimulated or having trouble focusing the eyes). They don't have a lot of the social symptoms, for instance. If a label like SPD doesn't exist, they will either be labeled with a disorder that they clearly don't have (and all the assumptions about psychology and treatment that come with it), or they will be left without recourse.

Obviously 1 in 20 kids don't have SPD, but that doesn't mean the diagnosis shouldn't exist. It seems to me, with all the human abilities that can exist and all the ways they can fall apart, the more diagnoses there are and the more precise they are, the better.

Laura said...

Emily, hi, welcome and thanks for the note.

"If a label like SPD doesn't exist, they will either be labeled with a disorder that they clearly don't have"

ha! "Clearly" is an interesting choice of words.

Nyx said...

what's not so clear to me is ... is it possible that in some of these children at least, spd is a possible precursor to autism? that maybe interventions are actually preventing it? I keep thinking about how the eides say that the difference is just that in spd, the "social" networks seem spared although the other long distance connections are disrupted. Yet it appears from some of the articles out there that sensory disruptions may actually be contributing to the lack of joint attention that may then lead to the social issues. So ... maybe some of our kids are on the edge? Sometimes it seems like my son is on the verge of autism. does that make sense? I have to work to keep him in our shared world sometimes, but increasingly he is here all the time. and he loves it. he is loving and affectionate and he loves to play games with us etc. you would never think he had a "social" problem. next door neighbor it turns out is a child psychologist and she was obviously surprised when I told her his diagnosis. "nice eye contact," she murmured. But I tell you now that in an alternate universe we lost him. There were times when we could not get him to look at us even. I have become a true believer in early intervention. For some of children, anyway, there is definitely a fork in the road. I think he will always have "issues," but not necessarily ... "social" ones. We'll see.

Laura said...

Nyx, I follow. Without a doubt, early intervention can be beneficial. As for those forks in the road, are you certain they're all in the rear view? *offers Nyx an illegible roadmap* I can't make heads or tails of this thing, but I think there may be more up ahead.

Kris said...

I find the whole idea of joint attention to be confusing. From what I can tell, my son has no problems with joint attention on a one to one basis. He brings me things, points things out, says "Look, Mommy..." all the time, etc. Is this joint attention? I assume it is..
Yet, in a group, he often seems out of it and sort of distances himself. I think he gets overwhelmed.
Just lately, we have been seeing some signs that he may be face blind to a certain extent. I think this may be interfering with his socializtion more than anything. HIs spec ed teacher told me this could go with SPD or autism and that there are several kids at the school who struggle with this. I wonder if this type of visual processing could cause the same type of problems Nyx is describing in blind children.
I do plan to have some more testing done but there is definitely something going on in that area!

Nyx said...

Laura, LOL, I'll take your roadmap, even if it's illegible. I hear what you're saying and you are right of course. I will admit I think something different every 30 minutes, and I won't even bring vaccines up here and now, but I have to admit that I think about them A LOT. I don't REALLY think vaccines hurt my son, but yet I haven't quite been able to bring myself to give him one since the dx yet. He's at that age where I have a little time and I'm taking it. but 30 minutes ago I said to my husband, "You don't think he seems so much better because ... you know ... we haven't given him any more vaccines? Do you?" And I don't believe that. Usually. The sleep deprivation isn't helping. I can't stay rational half the time anymore. Kris how uncanny you brought that up because I have been wondering just this week if my son is face blind. I'm going to plan some home testing this weekend, but he keeps calling people by other people's names, and most recently he is telling us that his own image in the mirror is his non-identical twin brother S. We say "Who is that?" He says "S." We say, "no it isn't. who is that?" He says "T ... looks like S." Hmmm. Face blindness would explain ... A LOT. (maybe)