The Phantom Menace?
June 19, 2008 by Kristina Chew, PhD
Filed under Health
Is Sensory Processing Disorder (SPD)—which is currently being diagnosed in 1 in 20 children—the “phantom menace,” as an article in Babble puts it? Many autistic individuals note difficulties with sensory stimuli. Maybe “menace” isn’t quite the right way to refer to sensory processing issues…..
Andy has SPD, and it became a problem. I have it, too, but it wasn’t a serious problem. I got some help with fine motor stuff as a kid, and called it a day. But with my little guy- he can’t deal with noise, he sometimes can’t deal with people, he can’t sit and eat… it’s a mess. His evals for fine motor and locomotion were far worse than we imagined (partly because he’s so much better than Joey was). We’re working hard to keep him clear of special ed, but we may have no choice- he may require special support to get through a school day.
SPD is very real. A “menace”? Not really. Andy has responded extremely well to his OT, especially the listening programs. Not only is it not a menace, it need not be a disability for most SPD kids!
I don’t think every child diagnosed with sensory processing disorder actually has anything wrong with them. Those numbers seem a bit too high. I do think sensory processing therapy works well with autistics and other children with delays.
Yeah, it’s mixed, and I wouldn’t call it objectively bad, but it practically is far tougher, because society has developed in such a way as to tolerate more noise that such individuals can or should easily be exposed to. Of course, there are always tactics to manage such things. I would hardly use the term “menace”, though.
Cliff
Is this the same as Sensory Integration Disorder? When I read a book about it I went “a ha!” about so many things in my life. Don’t we all have it to some degree? Though most of us learn how to deal with it, there are some who can’t.
We took our daughter to Lucy Miller’s STAR center in Denver when she was 13 months old, after she was (finally) diagnosed with SPD. We were desperate for help. None of has us had slept more than 2 hours for seven months. The ten day intensive therapy helped quite a bit. Prior to the SPD diagnosis by a developmental ped, no regular pediatrician would listen to me when I kept saying something wasn’t right (much like with the autism concerns) and the sensory problems manifested them so intensely that she did little but cried and was sick to her stomach most of every day. I heard a lot of “that’s how babies are” from BTDT moms but yet I couldn’t find anything in any parenting book (nor could these moms relate to my/my daughter’s actual experience) about how to stop the vomiting and crying. The sensory issues have grown somewhat better as my daughter has more control over what goes on in her world, who touches her, how loud sound is, etc. so that helps her a lot to learn to cope with what she can handle and what she can’t. On really bad days though when her communication skills are struggling, she has a harder time with all her sensory challenges too.
If by “menace” they meant: a thing that disturbs or annoys, then SPD is certainly that to my child. But we all have our own menaces, something that disturbs or annoys us, to one degree or another. Therapy isn’t required for all of our menaces and it isn’t always required (I think) for SPD as well. The question I’m always asking myself when it comes to therapy needs is: Is this interfering with my child’s ability to function in a way that allows her to fully participate, happily, with our family or her peers? If it’s just a sock or clothes issue, we work around it. If it’s vomiting after a family get-together, it’s time for some extra outside help.
I noticed at the end of May little boy was having problems. He was stimming more, walking out doors etc. The “line in the sand” came when he tried to bite me… he never bites, hits, pinches etc.
So I started immediately brushing, more trampoline etc.
2 weeks later the school called… little boy was bolting etc saying ‘recess’. Me “when’s the OT coming”, “She was here today” (it was 3pm), “Did you tell her”, “No”. “Call her, I’ll send ideas”. 2 days later she was back and a full sensory diet in place and brushing at school… he’s been fine since.
The weather has been up and down, and end of school seem to have gotten to big to handle. He has very minor sensory issues so this was a shock, but I have a book and ideas from 3yrs ago when he got his weighted blanket to help him sleep (5lbs over 5′x4′), and recognized the signs.
I’m just happy he’s feeling much better.
S.
I also think that most of us have some kind of sensory integration disorder–and thus, I don’t think it’s a disorder for most people. But as Sharon pointed out, some people learn to “manage” it, and some people never quite get a handle on it. We’re all born with an “integration disorder” and are supposed to modify as we develop so that we integrate better. I’m 40 years old and *still* learning about how to manage my sensory inputs. Aware parents can guide children along this path, focusing especially where there are trouble spots. But for one in twenty children to have it as a “disorder”? I’m doubtful that one in twenty children meet the criterion of having their daily function disrupted to the point of disorder by their efforts or inability to integrate or process sensory inputs.
That’s not to say that for some children, like Farmwife’s son, it’s not very real and doesn’t require consistent efforts at amelioration. But I bet many stories are like the one below:
My five-year-old-nephew’s teacher decided that he had “sensory integration disorder.” I think he has “five-year-old-boy” disorder. I’ve *seen* children who have *real* problems with sensory integration, and this child is not one of those children. No stimming, no unusual “self management” behaviors (earmuffs, self isolation, hyper-responsiveness, meltdowns, etc.). He’s actually pretty calm most of the time, from my experience with him, and he’s never “tuned out,” either. He had never been in a structured school environment, never had any instruction of any kind, and was suddenly having to do desk work in kindergarten, for which he was already younger than most. SID? No. Developmentally not ready or prepared for kindergarten? Yep.
Emily, I worked very briefly with a boy who, as one of his diagnoses, had sensory processing disorder. I never witnessed any sensory issues, and although I have to admit to having no qualification to diagnose anything, that I think he has “four year old boy disorder,” which will be replaced in a few months by the same thing as your nephew.
I believe in SPD but I have a hard time wrapping my brain around it. Brad is sensory seeking, frequently seeking out procieptive (sp?) and vestibular input. It has something to do with him not knowing where he is in relation to earth. But what does it feel like? Floating through space?
And how can SPD be distinct from autism? Don’t the sensory challenges beget the self-absorption/self-stimulation which in turn creates the social and communication challenges? So why is it some children have the sensory challenges but not the other challenges – is it a matter of degree? How exactly is “SPD” diagnosed?
My last observation: Brad’s OT seems to “get” Brad and understand autism beter than any of his other therapists or doctors, including his developmental pedi (whom I don’t think too much of). It disappoints me that there’s so little scholarship on the topic, relatively speaking.
I don’t disbelieve the existence of SPD/SID, but I question whether or not quite a number of diagnoses of it are, in fact, disorders that require addressing to restore (or introduce) an adequate level of functionality, or that they are simply a state of being that we all experience to some degree or another, that we manage to differing degrees of success, and that we learn to manage at differing rates of development. Not *everything* that doesn’t fit something normed to 1000 people of a specific age is a disorder.
My mental criterion for whether or not something is a “disorder” is whether or not it interferes substantially with legitimate functional aspects of existence. For me, rocking, vocalizing, flapping, stims, mild sensory sensitivities, or retained fisted grasp to the age of seven don’t really meet that criterion. Grabbing, intrusive body-space issues, processing deficits, and apparent memory problems do qualify.
Of course, there are subjective interpretations of “substantially” and “legitimate” or even what is required for functional existence, to some extent. For some people, “substantial” and “legitimate” means “He’s not making straight A’s.” For others, it means “inattentiveness has led to being severely behind or anxious or unable to participate in school.” For the former, I’d promote some insight into what’s genuinely important as a measure of growth, learing, and success. For the latter, I’d promote looking at what the school is doing to teach and reach, rather than focusing solely on the inattention to address the function.
But I digress, to some extent.
Laura, I explain vestibular sensory issues this way: have you ever gone down the stairs, and miscounted? If there is one more step, you feel like you’ve fallen through the earth and often DO fall. If you you are already at the bottom and mistakenly thought there was one more step, you can come down on your foot extra hard, and sometimes hurt or twist your ankle!
This is something like what vestibular sensory issues feel like with every single step my children take. Where is the floor? Is there a step to go or not?
My Andy has sensory processing disorder/sensory integration dysfunction, and he is not autistic. My other child had SPD/SID, and is autistic. There is a very definite difference. Andy has some motor issues that sometimes affect his speech and ability to use his hands (such as writing, drawing, putting on his shoes). they are also affecting locomotion. He had trouble sitting and focusing, and so we do have a trampoline here (a few jumps and he can sit and eat). However, he is functioning with minimal support in a normal preschool setting. We are a little concerned that he may need some support in kindergarden, but hopefully by the time he gets to upper elementary, he will have learned enough coping strategies and self-regulation strategies for this to be a non-issue.
Joey is completely different. He has severe expressive communication issues, his fine motor challenges and bilateral coordination are more obvious and require more therapy, and his ability to focus and engage in joint attention is severely hampered. His sensory requirements and challenges are also different- he doesn’t mind the noise like Andy, but he needs more oral input *though Andy is increasingly needing to chew on things…)
The difference is definitely the autism. Andy responds very well to sensory integration therapies, since he currently doesn’t seem to have other issues (such as ASD or ADHD). Joey has a harder time, because his issues are complicated by the ASD.
Thanks Joeymom. I like the stair analogy. That’s something I can actually relate to.
Emily, agree, and I don’t know where that line is.
Being more aware of Charlie’s sensory needs have made me more aware of my own and others—-of why a relative never could wear wool sweaters; I never wear socks; I’ve long been aware of my husband’s sensitivity to light and glare (when I first met him, he seemed to wear his shades almost full-time). Of course, a major difference between me and Charlie is that I can explain why something is bothering me and figure out how to change this, and he can’t always.