Suck a lemon, ASQ.
February 25, 2015 4:27 PM   Subscribe

 
She's...really proud of this arbitrary act of defiance, which achieves nothing except to make it slightly more difficult for medical professionals to help her child.
posted by escape from the potato planet at 4:38 PM on February 25, 2015 [7 favorites]


The questionnaire is irrelevant to her child, and she was clear that her doctor would have been cool with her not filling it in. She was making humor out of a tough situation, which is what she seems to do a lot of on her blog.
posted by not that girl at 4:47 PM on February 25, 2015 [10 favorites]


That's a little harsh, eftpp. As far as I can tell, she answered the relevant questions honestly, like the one about her son putting things away where they belong. (Hell, I still haven't mastered that skill.) She only objected to the questions that were outrageously assumptive and inappropriate, like the ones that asked about walking, an ability that her son will never possess. Any medical professional who actually met her son would gloss over those because they just aren't relevant. Her small act of defiance helps her own mental health and proves, in an entertaining way, that one-size-fits-all paperwork is not always the best tool for medical care.

For further insight, see the comment in which a mother describes sweating bullets over questions regarding her son's "hands," when he only possesses one. Why would you design a worksheet that makes people feel excluded?
posted by Faint of Butt at 4:48 PM on February 25, 2015 [3 favorites]


The questions on the ASQ are not assumptive or inappropriate. They are based on normative data, which is what the entire science of child development and disability is based on, and it has been highly effective, though imperfect. The ASQ is not meant to be a celebration or warm fuzzy about what a child can do well. It's a diagnostic tool designed to highlight areas of impairment and disability.

When we test children for various impairments and disabilities, we look for where the child deviates from the norm, because that tells us a lot more than where they don't, and it allows us to better diagnose and create an effective treatment and therapy plan for the child.

I appreciate that this mother tried to make humor from a difficult situation; lord knows I've been there too. But I don't think it's particularly helpful to the project of helping children lead happy and fulfilling lives to be so "herf derf dumb scientific tool" about things which have had a lot of thought, experiment and work go in to them, and are, overall, very useful.
posted by Lutoslawski at 5:05 PM on February 25, 2015 [15 favorites]


I'm somewhat hard-pressed to imagine how you could design that worksheet in a way that wouldn't make people feel excluded. I could imagine some technological solutions -- instead of a form, have a web-based quiz (or even a custom printed form) that would change based on the existing medical diagnoses of the child, perhaps -- but not a way to take a general questionnaire and not have it be based on some aspects of typical development.

It seems clear to me that in most situations assessing how kids are progressing on things like learning to walk is important, even if there are some kids out there who aren't ever going to learn to walk. The problem here doesn't seem to be the worksheet, but that the people at this woman's doctors office are idiots who didn't think 'hey, maybe a worksheet based on typical physical development markers like walking and ball kicking is not appropriate for this child and we shouldn't give it to them as is.'

I think the mother's approach to that idiocy was kind of great. She got some amusement out of it rather than letting it beat her down, and hopefully her doctor's office staff will take her point when they see the returned form.
posted by jacquilynne at 5:12 PM on February 25, 2015 [3 favorites]


If your positive outlook is like a slug, then the ASQ is like a pound of table salt.

Yeah -- tailoring even in a gross way this kind of developmental measure to a child's known abilities seems to make a good deal of sense.
posted by allthinky at 5:25 PM on February 25, 2015


The reason you could never tailor these in any way is because it would render them meaningless. These measures are only scientifically useful (and can only exist at all, really) as function of a comparison to normative data.
posted by Lutoslawski at 5:30 PM on February 25, 2015 [2 favorites]



I agree with the thoughtless office analysis.

Our pediatrician asks similar questions - but we've never had a written questionnaire. I have no doubt that if faced by a kid i a wheelchair, they'd either skip the question or ask a variation that is somehow relevant to track progress by the specific child. We also get a hand of of "typical" things a kid of xx age will do and some thing they "may" be able to do. That seems better.
posted by Measured Out my Life in Coffeespoons at 5:36 PM on February 25, 2015 [1 favorite]


These measures are only scientifically useful (and can only exist at all, really) as function of a comparison to normative data.

Maybe I'm unclear on the use of these forms, but I got the impression they were a diagnostic tool rather than a tool for gathering data for further study. Is that impression incorrect?

I can't see any diagnostic value in comparing the walking skills of a child you already know is never going to walk to normative data on walking. They presumably don't still need to diagnose whatever put him the chair and weren't waiting for him to turn two so they could fill out this form to try and figure it out. They might still want to use the parts of the form that focus on things like verbal development (or whatever else it focuses on), but tearing out the page that's about whether he can jump or walk might be appropriate for this kid.
posted by jacquilynne at 6:10 PM on February 25, 2015 [2 favorites]


I thought it was cute and it made me laugh. The infallibly ridiculous structures and processes of medicine at a grand scale necessitate some humour.
posted by geek anachronism at 6:32 PM on February 25, 2015 [3 favorites]


The ASQ is a group of screening questionnaires intended for clinical use, to identify kids with developmental delays (ASQ-3) and emotional-social problems (ASQ-SE). The items and the cutoffs were developed with large groups of children (including kids with and without delays) but it doesn't look to me like it's intended for use with kids with physical disabilities and I can't find anything on the website that suggests it's been validated for such use. They're screening questionnaires, so once your kid has already been identified as having delays and the domains of the delays have been identified, there's no purpose to further screening him.
posted by gingerest at 6:34 PM on February 25, 2015 [6 favorites]


but I got the impression they were a diagnostic tool rather than a tool for gathering data for further study. Is that impression incorrect?

Yes, this is incorrect. It's actually a chicken and an egg thing. Data from these tools is collected and used to generate the norms which are then used as the diagnostic criteria. Data from the ASQ is periodically collected and assessed. The ASQ is just one of many such tools that are useful in different ways.

The ASQ also has different scoring norms for different age groups and developmental milestones, so its very useful to track a child's development against norms. Just because it's a screening tool does not mean that it isn't useful to continue to give.

When a child develops non-typically, it's very useful to continue to monitor that child's development in comparison to norms; it provides a wealth of information about where exactly your child is, in nuanced and complex ways. It's extremely reductive to say, well, we can see this kid can't walk, so I guess we'll just stop monitoring and comparing his progress and treat him in a sort of vacuum. Identification is the easy part; tracking and treating is the real work of therapy and treatment. Further, being able to collect lots of data on lots of children at different times really strengthens the efficacy and use of these tools. When parents fill them out, they are not just helping their own children.

Parent report is a critical tool for this kind of tracking and treating. But parents are not experts in the conditions their children have nor in the effective treatments of those conditions. Creating methods for eliciting useful, scientifically viable responses from parents regarding their child's developmental state that can be standardized has been a cornerstone of education, speech pathology, child development, etc. for a long time. It works. That's why doctors keep doing it.
posted by Lutoslawski at 7:09 PM on February 25, 2015 [2 favorites]


I dunno. I get the need for the humor, I really do. I guess I'm just pretty earnest about these things because I use these types of tools in treating my own patients and, while they are imperfect, they have really helped change a lot of lives and create a lot of progress in how we diagnose and treat these things in recent decades. I guess if I gave a similar tool to a parent of a child I'm treating and they did this, I would feel pretty disheartened. I would understand, truly I would, but I would also feel a bit like, hey, I'm just trying to use what I have at my disposal to come up with the best possible treatment for your child (and every child in the future who will face the same challenges).
posted by Lutoslawski at 7:16 PM on February 25, 2015 [2 favorites]


The questionnaire is designed to accommodate a broad spectrum of parents. Some are really smart, some are super dumb, and most are in between the two. The questions are also meant to be skipped if they don't apply. This is kind of like critiquing an IHOP menu.
posted by Brocktoon at 8:14 PM on February 25, 2015


I would understand, truly I would, but I would also feel a bit like, hey, I'm just trying to use what I have at my disposal to come up with the best possible treatment for your child (and every child in the future who will face the same challenges).

So based solely on the answers to the Ages and Stages questionnaire, what treatments would you propose to help this child meet his developmental goals?
posted by happyroach at 8:23 PM on February 25, 2015 [2 favorites]


But I don't think it's particularly helpful to the project of helping children lead happy and fulfilling lives to be so "herf derf dumb scientific tool"

Yeah, but the project of helping children lead happy and fulfilling lives is not her job. Her job is helping only her own child (and herself and her family) live a happy and fulfilling life. And the tool is hurting that. What's good in the aggregate is not necessarily good in the individual case, and her plate is already full.

Unfortunately it's an endless battle, but I feel really strongly that for those of us who are health care providers, part of our job is to minimize the impact on individual patients/families of whatever imperfections of our field we can, and where we can't do that, to at least let the inevitably resulting anger roll off our backs.

In this case, knowing now that the tool is hurtful to some patients' families, maybe there is a way to present it that can minimize that harm. For example, "I have a form for you to fill out, but it was made based on a hypothetical average of all children, so some of the questions will not apply to your child. Please feel free to leave those blank or cross them out."

And if that's not enough, because inevitably, it won't always be, meh, let the patient/family member vent. It's nothing personal, after all, and easier for us to absorb than it is for the patient/family to do the same.
posted by shiawase at 8:23 PM on February 25, 2015 [3 favorites]


I never knew this thing existed. Our pediatrician was quite Old Skool, with a penchant for talking to us about our kids as individual people. I suspect he would have been horrified by a form in place of "Hey, Alex, show me how high you can jump!"

I get that docs are busy, but damn. Giving that form to the mother of a kiddo who is not ever going to walk is really thoughtless. Good on her for finding the funny.
posted by MissySedai at 9:07 PM on February 25, 2015


It's extremely reductive to say, well, we can see this kid can't walk, so I guess we'll just stop monitoring and comparing his progress and treat him in a sort of vacuum.

I wasn't suggesting anything so reductive. Just that if you already know the kid can't move his legs, asking his mother to answer a page of questions about how well he moves his legs might not be the best use of her time or emotional resources. If the data goes back into the surveyers and can't be used without her answering those questions, that tilts the calculus on that equation more towards having her do it. But, it's still not a slam dunk, and it definitely warrants some thinking about how that sort of questionnaire is both worded internally and presented by medical staff to the patient and their family members.
posted by jacquilynne at 9:08 PM on February 25, 2015


I see what you're saying, Lutoslawski, but it seems like even if mom filled out the form to the best of her abilities, interpreting it might be really difficult given that it's not validated for kids with physical disabilities like Simeon's. I get that you use tools like it, and you get information from them about where his functioning fits relative to the Normative Child, but wouldn't just asking about relevant milestones during your history achieve the same end without stressing the mom out? She sounds like she was pretty upset by the nine-month ASQ, which makes me think giving her the packet this time did not do her relationship to Simeon's PCP any favors.
posted by gingerest at 11:22 PM on February 25, 2015 [1 favorite]


If my kid had a condition which meant they were going to be a wheelchair user, I'd still want to complete the screening tests, because my kid might still have a different condition. The AQS doesn't cover just walking, right? Also hand-eye coordination, behaviour and so on? Why would my wheelchair-using kid not be at risk of other conditions which would be picked up by the screening? That's what screening is for.
posted by alasdair at 2:24 AM on February 26, 2015


I think that part of her anger and humour comes from the fact that every day she probably had to deal with a lot of strangers just like the people on metafilter, telling her She's Doing It Wrong.

Also, I think part of the "She's Doing It Wrong" thing going on here is she's not following the standard narrative where the mothers of disabled children are supposed to be stoic angels suffering under the burden of caring for their child.a sense if humour doesn't fit in with the inspiration porn native.
posted by happyroach at 7:40 AM on February 26, 2015 [4 favorites]


As a clinician who works with atypically developing children, I am sure this mother is a delight to work with.
posted by fraxil at 8:14 AM on February 26, 2015 [1 favorite]


The thing about the ASQ is that the questions are not "yes/no", they're "yes/not yet". Having been brought to tears by a medical yes/no question before, I can really imagine that "yet" being more a stab through the heart than a simple "no".
posted by tchemgrrl at 11:08 AM on February 27, 2015 [1 favorite]


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