Recently, I was with my middle kid, whom I will call James, on a playdate. The other kid was receiving physical therapy and speech therapy because he wasn’t walking or talking at 15 months. He seemed otherwise normal to my untrained eye. That surprised me a bit. For all I know, though, therapy really is shown to be helpful under those circumstances. This same mother has an older son who is the same age as my oldest son (I’ll call my oldest son Thomas). She said that she had an appointment with a psychiatrist for her oldest because she suspected an anxiety disorder. She said that her kid will fixate on some idea or other and ask over and over about it. Like, will the house burn down? Will alligators eat him? He also is very nervous and new situations, and is very particular about his routines.
This sounds exactly like Thomas. But it never even occurred to me to think he had an anxiety disorder. I’ve always just thought he was a nervous, uptight, shy sort of kid. So her kid will presumably get at least some treatment and mine will not. For the same group of symptoms (if symptoms they really are). Maybe her kid will be helped out of his anxiety, and I am not taking the problem seriously enough. Maybe she is over-medicalizing her kid.
I honestly don’t know whether I’m right or this other mother is. Of course, she may well be, but of course I suspect I am. I worry that calling what used to be considered quirkiness a “disorder” might be problematic in some ways. Indeed, the tendency to use semi-jargon-y terms to describe kid’s behavior more generally is problematic: “He has sensory integration problems,” “He has trouble with transitions,” “She’s an excellent self-soother,” “I’m worried about my kid’s gross motor skills, or cognitive development,” “My kid is delayed in army-crawling.”
Forget about pathologizing someone healthy. This is a problem even for kids who have an established disorder. As my regulars know, James has a chromosomal disorder with severe cognitive and psychomotor disabilities. Many of his oddities fall under what people consider sensory integration problems: he rocks, he taps his head or chin repeatedly, he bites his arm, he pulls his hair, he mouths objects, he is absolutely repulsed by any food, he gags when touching cold metal or cold hands. He was given a feeding tube at an early age, and now gags when any food with any taste is put in his mouth. Still, I worry that thinking in terms of, say, “sensory integration disorders” can, sometimes, be misleading.
Before I say how, allow me to say unequivocally: I don’t think that these issues are solely the province of upper-middle-class parents with too much time on their hands worried that little Jack or little Charlotte isn’t doing well enough in school. I was a little bothered by some of the comments on a post I made a while ago which suggested that people thought Asperger’s is total BS. Surely sometimes kids are overdiagnosed. As I said above, I suspect it may be the case with my son’s playdate mate. But often there is a kid who has these issues, and who can be very difficult to deal with. And who can honestly genuinely totally freak out in crowds or around loud noises or the sound of crinkling paper. So I want to be clear: I don’t think autism or Asperger’s is some sort of invention of the modern over-involved parent. I also know first hand how difficult some of these behaviors can be to deal with.
My objection is to how they are described. Instead of kid liking to chew on things, the kid is “satisfying his need for oral stimulation.” A kid who has a lot of trouble eating has “oral hypo- or hyper-sensitivity.” A kid who rocks is “satisfying his vestibular stim needs.” A kid who frequently asks if his house is going to burn down has “anxiety disorder.” Another kid has “sensory integration disorder.” Etc. Etc.
All of these do indeed describe something about what’s going on. When these behaviors manifest, there seems to be something not quite right with the sensory modality, whether the brain is interpreting the data differently from typical, or attaching the wrong affective valence to the sensory data, or whatever.
And there is a benefit to medicalizing terms. To the degree that people blame the children, or try to correct the problem with punishment, it is useful to have medicalized terms. It eases blaming of the child and the parents, and might open parents to non-punitive methods of rectification.
There are drawbacks, however, that come with these benefits. Most notably, people tend to assume that a medical problem requires a medical solution. Instead of letting the kid figure it out, or the parents figure it out, parents tend to feel that they must consult therapists, doctors, and even medication. This increases health care costs and surely leads to some unnecessary treatments. It also leads to a lack of confidence on the parents’ part. They lose faith in their own ability to deal with their kid. Parents could likely deal with a lot of these issues themselves. They could learn to avoid certain situations, and to gradually introduce some sensory inputs. To the degree that it makes parents open to new ideas, I suppose that’s a good thing. But it’s easy to see where it feels like you can’t take a step with your kid without making sure it’s the “right” step. That’s a lot of pressure to put on a parent-child relationship.
It communicates to the child that she can’t handle the problem herself and that something’s wrong with her. Maybe she can’t handle the problem and it’s good she asks for help. But there are some issues kids can handle on their own, and when they can, it’s best to do let them. What better “teachable moment” is there? Children with such diagnoses also are treated differently by teachers and friends and other adults in their life. This can be drastic or subtle, but it’s bound to impact them in some way or other.
It also alienates parents and others from what the kid is really feeling. I mean, we all have some sensory quirk or other. Maybe you think the texture of okra is gross, or you freak out at the sound of nails on a chalkboard, or grapefruit makes your mouth feel all weird. You don’t describe it in the medical terms to yourself. You think, “I am grossed out by okra.” When you say your kid gags when he touches cold metal because “he is hypersensitive to certain tactile inputs,” it makes it seem as if it’s a fundamentally alien experience. If you say “he’s grossed out by cold metal,” it’s a much more relatable situation. This is especially important when you have a kid with a lot of special needs.
It will be interesting to see what happens as this generation of kids ages, to see if those who receive a medical diagnosis thrive due to interventions in a way that others do not.
I tend to think of these things along a spectrum. There is no hard line in the sand between “normal” and “not”. We ALL respond to sensory input. Some of us respond in a way that causes us no problems in day-to-day situations. Some of us respond in a way that makes certain situations harder to manage. Some of us respond in a way that makes most situations impossible to manage without support. Who should get diagnosed or treated or medicated? That should be decided by the patient (or his/her guardians, should the patient be unable to appropriately self-advocate), the doctor, and other trained professionals. Some folks can make the necessary accommodations or develop effective compensation strategies such that a diagnosis is completely unnecessary, even though another person exhibiting the exact same symptoms might very well need that in order to live a ‘normal’ life. I have a student coming into my class who his previous teacher described to me thusly (paraphrased): Does JoeBlow probably have a mild form of Asberger’s? Yes. Is he likely ever going to get a diagnosis or treatment? No. Does he need either? Probably not. He’ll be a bright kid who is very successful and likely achieves great heights in certain fields who will always struggle a bit socially and have some quirks that make certain situations difficult.
I tend to use medicalized terminology, especially if I think it best serves the situation. The times I don’t is when I either lack the knowledge or vocabulary to appropriately do so OR if it is not appropriate for me to do so (for instance, I might be 99% certain that a child is on the spectrum or has a language processing disorder, but since I am not trained to make such diagnoses, it would be inappropriate for me to use such language; as such, I often hint around the issues and then refer to specialists).
I should say that, at least in some behind-the-scenes teacher-circles, “quirky” is how we often describe students whom we think are on the spectrum but whom lack a diagnosis and/or we don’t want to go so far as to attach that label, even informally. Not sure if you were familiar with the term’s usage in this way, but I found it an interesting coincidence if not.
I worry about it even in the cases where it poses a problem to everyday functioning. I’m not saying it absolutely shouldn’t be done. But you have the problem of thinking that the family cannot come up with appropriate coping strategies, or can do so with very minimal coaching. And also, I think the alienating factor is a big deal especially when the issue impacts everyday functioning. That’s when it’s important to remain relatability to other people.
I’m not sure I understand, Rose. What is it you worry about/believe poses a problem? Seeking diagnosis/treatment or not doing so? What do you think can be an alienating factor or impact relatability?
I definitely think parents/people should seek treatment when efforts to deal with it themselves fail. But I think it’s worth a shot to do it themselves first. I know too many people who say things like, “I was told my daughter had Sensory Integration Disorder. I didn’t even know what that was!” And the assumption is that when it has a name, it needs treatment. And that they don’t know what they’re supposed to do themselves. Sometimes they don’t know. Sometimes all they need to do is read a book or have a consultation or two with a professional. Sometimes they need ongoing therapeutic support or drugs. I may be accused of the post calling the kettle black – my kid sees an OT regularly (although a bit less regularly than recommended by some professionals) and I give him an over the counter supplement that reduces repetitive behaviors.
Here’s the change I’d like to see. The default seems to be get the most therapy possible. And that has a lot of drawbacks. I’d love to see a shift where it’s the least therapy it takes to get to a more livable place. I think that will improve the parent-child relationship, improve the confidence of parent and child, and reduce unnecessary treatments.
Also, like I said, I worry very much that even when you do seek treatment, you should use colloquial terms where possible. Like I said, it’s easier to relate to what’s going on with your kid when you say that you’re helping him figure out a way to be less grossed out by cold metal than when you say that you’re engaging in sensory integration therapy to reduce his tactile hypersensitivity. It keeps the parent more involved and engaged, and keeps the continuum between typical and disabled as apparent as it, in fact, is.
Gotcha. That is what I thought you meant, but I wanted to be clear. In response to paragraph three, I had initially typed out a similar belief, namely that we should always work our way from the least invasive intervention to the most, and include things like, “Educating yourself through reading a book and connecting with other going through a similar experience,” as interventions.
To your last point, I think that door swings both ways. Telling another parent your child is hyposensitive will get blank stares or eye rolls. Saying he’s less sensitive to touch and might therefor be rougher than is appropriate will help them better understand him. On the other hand, offering the diagnosis might make the difference between people seeing him as a child “with needs” and a bad boy who is mean and aggressive and violent. It all depends on what you are attempting to convey. (I use this last example since I have come to believe that I have at least some mild hyposensitivity. Coupled with my wife’s mild hypersensitivity, things like hugging or snuggling can be experienced very differently by the two of us. Mind you, I don’t think either of us have a “disorder”… we are just at different places on the spectrum of sensitivity.)
I try to stay away from labels and jargon as often as I can. I only bring up a diagnosis or use medical jargon when I feel that it will provide more accurate information than commonly used language. I’ve adopted this practice through my work as a person-centered trainer and facilitator. I prefer, and teach other professionals, to describe Jane and her quirks so that those supporting her (paid professionals, friends, family, neighbors, the bus driver, etc.) are able to relate to Jane as just another human being. Once people get to know Jane they are less likely see the disability label and generalize her diagnosis to other people.
Miss Mary, do you think this is the general practice with grown-ups? I don’t find it all to be the case with most PTs, OTs, STs, etc. at the little kid level.
I do not think it is the case with paid professionals no matter the age of the people they are working for/with. People with a medical training background are the most difficult to retrain to think in a person-centered way, because, of course, they have been taught to use that language to communicate in that subculture. Trying to help them understand how language can be a barrier for the people they support (read: patients) can be difficult at times. Being person-centered is sometimes looked at as an extra or feel-good thing people could do that doesn’t make a large impact on the service being provided. In reality people who have come into receiving person-centered services report that they receive higher quality care than programs that breed a diffent culture.
Does that answer your question? I see the need for person-centered practice in every age group and am only just now seeing it come into elder care and nursing homes. The idea can be difficult for people to grasp and/or see the importance of so it is not uncommon that professionals may have heard of the concept but let it fall to the side due to no on-going support or training.
Mary-
While I understand the mindset here and appreciate your focus on person-centered practice, isn’t there a certain efficiency and efficacy to using generalized diagnoses? Treatment and support should still be individualized, but if you give me a laundry list of “quirks” but never describe a broader diagnosis, it might take me that much longer to develop a support plan.
I guess I see it as a “both/and”. I see no problem with saying, “JoeBlow has Condition X, presenting with Quirks A, B, and C but not D, E, and F.” Giving just the condition -OR- the quirks seems to paint a less-than-complete picture.
I harken back to a conversation I had once with parents of a child whom I was recommending for a speech and language evaluation. The father was very resistant, in part because he was afraid of his child being labeled and this label following him for literally the rest of his life. I attempted to explain that since we were an independent school and, if they did pursue an evaluation, they would do so through private evaluators, they had a lot of control over the flow of information. I further expressed that our desire was not to label a child, but only to better understand how we could best support him in finding success. The father saw it very differently, and did not agree with my belief that information itself is neutral and that in the hands of trusted and caring professionals, would only be used to serve the child. He felt that information had an inherent quality to it, and that information pertaining to a diagnosis would inherently harm his son. It was a respectful but tense conversation, with the family ultimately opting not to pursue an evaluation, a decision I disagreed with but respected.
Whether we refer to an individual as having autism or being “quirky” doesn’t really matter… the person still is who he is and our description will not change that. It will change how we respond to that person, how we treat that person, and how we think of that person. The extent to which a diagnosis makes us do any of these things better or worse says more about us as individuals and as a society than it does about the individual in question.
Not to pick a nit, but for a patient to meet the diagnostic criteria for autism, the problems must be far greater than could be mistaken for mere quirks.
Good point. It would have been more accurate to refer to being on the spectrum than specifically being autistic.
Yes. And along with positives, that can have a lot of negatives. As in the case you describe, even if only the parents have a diagnosis, it affects the parent child relationship.
Oh, absolutely! That was my point. What we do with the information is what ultimately matters. That, at least, we have some control over. But not getting a diagnosis doesn’t mean that there isn’t something going on.
Yes, it is important to sometimes use the diagnosis, but I would not recommend starting a conversation or introducing a person using their label. Educated professionals who have worked with people with disabilities may not generalize, however, like the parent you describe, most people know that a label can elicit negative reactions from people who don’t think of the person under the label first. It should be noted (because the term person-centered is frequently misunderstood) that I’m not advocating we get rid of the diagnosis all together. That is how we get treatment and therapies and I’m sure it it immensely helpful to people communicating within the medical field; however, like Rose notes, it creates a division in relationships. People (with or without a disability) automatically notice the difference between them and others so the emphasis should be on similarities before pulling out the label.
Good point. Audience matters. I speak with my colleagues who I know have a solid understanding of special needs differently than those who lack this or are hostile to supporting such students. I speak with trained professionals differently than parents.
Some parents freak out if they see the school’s number show up on their caller ID. These are not parents to offer up the diagnosis minute one. Other parents won’t be bothered to give it a second thought unless their is a diagnosis. Every situation demands a unique course of action.
Just because it’s something to be handled without professional help doesn’t mean it’s not a real disease/disorder (or, equivalently, just because something is a disease/disorder, that doesn’t mean it requires professional treatment. Infectious sinusitis is something that most people can treat without consulting a doctor. Although, admittedly, most people don’t even use medicalized terminology for clear, pathogen-caused diseases when they’re self treating; they say “I have a head cold” not “I have viral sinusitis”.
I would hope, though, that there’s no harm in consulting a professional when you’re not sure if it’s needed. A pediatrician would send home a nervous mother whose kid has sinusitis with a prescription for fluids and rest. I would hope the psychiatrist could identify a minor problem as minor and prescribe clear communication and parental support (or whatever) before jumping to SSRIs (etc). And, if they can’t, that seems like as much of a problem with the psychiatrist as with the parents.
I actually think this is as much a problem with the way professionals communicate this to parents as it is with parents. And even if it needs professional help, I just think talking about it that way has some drawbacks.
Some providers are much better at putting even genuine symptoms of mental health disorders in human terms than others.
And my general approach to calling something a disorder or not is the degree of impact on quality of life. If relatively minor adjustments can be made to accommodate a child’s sensory issues, for example, and he moves through life without much trouble, I am very reluctant to label it a disorder. If she has to stop walking every ten minutes and adjust the seam of her socks so it goes exactly horizontal across her toes, probably a disorder.
Usually the difference between a quirk and disorder depends on how much it affects a child’s functioning. Does it impair their schooling? Are they unable to make friends? etc. If a kid can function then they probably need little or no help although maybe there are things they can be helped to improve.
When i was a child therapist i had a cute little 7 year old who had a textbook case of ADHD. Really fun kid. He had a good doc, by which i mean, the doc was light with meds. One on one he was pretty easy to work with and help him through his hyperactivty. His mom, there was no dad involved, wanted a magic pill to cure him. I other people in the agency talked to the mom in every way we coudl think to encourage her to make some really obvious changes to help little Jesse improve at home. We asked her to have a regular schedule, not ask him to watch his younger sibs, not give him multi step instructions and have more structure in the home. She never listened so Jesse kept having problems at home. Luckily the school was having some success with the obvious interventions. I hope Jesse grew out of ADHD or home was just going to get worse. Sometimes a diagnosis means parents just want a magic pill instead of a set of a set of interventions they will have to put work into.
there’s an entire publishing industry devoted to helping anxious parents remain paranoid. markets in everything and all that jazz.
Another problem with the medicalisation of personality quirks is that it seems as if psychologists are not happy unless people fit within some narrow range of personalities. The non-conformist in me finds this more than a little creepy.
I don’t know how representative this is of the current practice of psychology, but a lot of things strike me as problematic when psychologists tell me whether or not to feel guilty about something.
1. Psychologists are presumably certified by the state. So, it seems that the state has taken on the duty of telling us what we should or should not feel guilty about. The libertarian in me is horrified
2. Psychologists are not ostensibly in any better position than their patient in deciding what is morally right and wrong and are therefore not in a position to tell people what they shouldn’t be feeling guilty about. Since I am not much for religious ethics, I suppose that even pastors aren’t particularly likely to be right about such questions. However, even so, at least they still bill themselves as moral authorities. People who go to them for absolution go to them in the belief that they are in fact moral authorities. While I think that they many people are wrong about this, it doesn’t bother me in the same way people going to psychologists does. What would the practice of psychology be like if psychologists more explicitly billed themselves as moral authorities? (I think that people will start to view them as just another kind of priest)
3. Related to no 2 is that something irks me about the spiel that people should feel good about themselves or that people shouldn’t feel guilty. Maybe, you know, there are things that we should be feeling guilty about or we really do have reason to feel bad about ourselves.
I actually meant to say something about the worry about creating Stepford children. Even the “impair functioning” label is sort of fluid. As I’ve said in other posts, I gag when I touch velvet. So I don’t touch velvet. This inhibits my functioning in a way, I suppose, but it’s in a way that’s livable. And each person is going to find different functional levels livable.
I’ve actually had the other worry about psychologists. That mosts are so concerned about making any kind of moral criticism of a patient that they take a sort of morally nihilistic approach. Which sort of ignores the genuine pain that moral guilt both can and sometimes should incur.
I cannot specifically address your questions since I am not current on the parenting culture or the latest developments in child development. But perhaps I can give you some background to frame the picture.
I was trained as a Montessori teacher at an institute in Wash, DC and another in Bergamo, Italy and taught in Montessori pre-schools in the US, Germany and Mexico. That was back in the 70s. Even then it was sad to see that parents had no experience with children before they had their own. Because of that, they had no idea what was “normal” and what was not. They didn’t know how to deal with children physically, emotionally or intellectually. One mother told me she was afraid to cut her baby’s nails for fear of injuring her. Compounding the problem, most schools then did decide who was “normal” and who was not. They put them in separate classes.
In Montessori we tried hard to integrate students believing that since the world has all kinds of people – high and low IQs, different cultures and languages, athletes and physically handicapped, etc – that that was the best way to prepare children for the real world.
My mother who was born in 1911 always said that when she was growing up 3 generations lived together in one house. People grew up around children, adults in their prime and the elderly. They learned from that experience and one generation passed its knowledge on to the next. While obviously that can be a two edged sword, it often worked to teach people to relax and deal with the normal ups and downs of life and to distinguish them from the “abnormal” and hopefully to accept some “abnormal” as eccentric to be ignored or enjoyed while recognizing the kind that had to be consciously dealt with.
Today all that is missing. It creates serious problems although I have no idea what the solution is or if there even can be one in the society in which we live today.
My oldest goes to a Montessori school. One of the things I love about it is how completely unworried they are about everything, and how confident they are that everything will be all right in the end. A bunch of things that have set off alarm bells with my kid’s friends, and have inspired suggestions from their teachers to seek outside help, are things my oldest also does. And when I bring it up in parent-teacher conferences, they say flat-out, “We’re just not worried about it.” I may well rue these words one day, of course.
I agree strongly about the value of being with all sorts. I think the move toward inclusion is painted as a benefit for the disabled, but it is also a benefit for the typical.
As I posted not so long ago, my son also goes to a Montessori school and his teacher did recommend evaluation for what she perceived as unusual behaviors (which, by the way, have almost entirely disappeared and about which I had no worries). Clearly not all Montessori schools take the same approach.
I’m with you on the trying to be relaxed about kid quirkiness. Both of my older children have been bullied because of their quirky personalities, both to the point where they needed to see the school counselor. I have been very supportive of this knowing that having an additional adult support and encourage them is a positive thing. I did not however get additional counseling for depression for my second child as suggested based on my experience with her older sister who learned that a little self-confidence and socialization served to deter her bullies. It turned out that all that was needed was for my child to have her classes changed where she was separated from her bullies and in a school activity that she loves.
The endgame of any quirk or disorder resolves to the parent’s roles and relationships in the situation. As others have noted, every kid’s unique but so are the parents.
Sitting around at a birthday party yesterday, making the acquaintance of a man finishing up his master’s degree in psychotherapy. He’s going to specialise to working with people with chronic diseases: he’s got Crohn’s Disease himself. He’s working in group home situations, also working with a suicide hotline. Fascinating discussion, felt like I learned a lot. It’s his observation psychotherapy’s more effective when the parent’s the target and the child is sorta along for the ride, so to speak. He gets to see these kids once they’re in contact with the justice system. Seventy percent of them will end up in the prison system, statistically.
It’s the caregiver who has to cope. It’s the caregiver who needs the help. I’m dealing with a situation with an elderly woman with a brain tumour: there’s only so much we can do about her concomitant personality disorders. We’d like to think being a parent comes naturally and I suppose for some people it does. But every parent’s had some genuinely awful moments of despair and doubt.
Our old Ozzie and Harriet single family model is a botch. It’s just not working about and it’s not sound, historically. Every child needs about six adults in his life, people who care for him: grandparents, uncles, aunts, family friends. When Hillary Clinton said “it takes a village to raise a child” she wasn’t far wrong. Parents and caregivers need support, too. Sometimes, more than support, the caregiver needs validation, someone else to simply look at the situation and grunt intelligently at it. I cannot speak for all parents, but the worst moments of raising children were when I lacked that validation.
If rising land prices means people move back in with their parents, the reconnecting with their extended family will be a silver lining