New Study - Young Kids with FA's May Learn Helplessness

[GoingNuts]

http://news.yahoo.com/young-kids-food-allergies-may-learn-helplessness-151758332.html

[PurpleCat]

Clearly they weren't watching my child! 

[SilverLining]

Clearly they weren't watching my child!

Maybe they were watching yours at five.

The researchers didn't see any differences in requests for help among the five- and six-year-olds with and without allergies.

If children at three and four there is a noticeable difference in them indirectly asking for help, maybe it's just that those parents are, overall, more engaged with their children.  Because, apparently, a year later they are just as independent.

So....what's the issue?

[CMdeux]

Here are my observations from having raised a FA child with pretty extreme sensitivity and extensive reaction history.  Well, she's 15, so she's not completely "raised" yet, I suppose. 

Toddler years-- you don't have a CHOICE but to alter the normal developmental arc.  Well.  You do, but there is no rational way that you're going to choose to allow your child to explore normally when it results in regularly experiencing the trauma of anaphylaxis.  So yeah-- you scoop them up, keep them in strollers, and teach them NOT to mouth things, not to TOUCH things.

Preschool-- Again, normal developmental arc is altered here-- my daughter learned to fear other children-- and their parents, no matter how well-meaning.  Food-food-food-food-food. 

Elementary-- it sets your child apart when they know that food can kill them-- even the food of OTHERS can kill them, and that is knowledge that can't be un-known. 

This arc continues into adolescence-- it can result in either a super-cautious and aloof approach to life, or in a fatalistic 'nothing that I do matters anyway' one.



Bottom line, it's learned helplessness, all right.  But IMO, it's imposed by the CONDITION ITSELF, not by parental management.  At least not in kids that are being managed appropriately.    My daughter has learned that all of her management experience and expertise-- which is substantial, btw-- can be undone by the most stupid and unavoidable things-- things that she cannot possibly control for, like some person eating a cashew-laced handful of trail mix just before handing a 20 to a cashier... a 20 which later gets passed to my DD, who rubs her face... and picks up that few micrograms of protein and washes it into a mucous membrane 4 hours later...  WHAM.  THIS IS HER LIFE. 

Now, is "learned helplessness" really such an irrational construct in light of that reality?

Not in this case, it isn't.

I would argue that parents who go to the kinds of lengths that we do on the basis of a positive skin test after a fishing expedition not prompted by specific reaction history, though...   THAT isn't a matter of learned helplessness (and as the study shows, this is probably just a DIFFERENT developmental arc, anyway-- not a damaged one) so much as overreactive/inappropriate management.  Just as it would have been grossly negligent of us to have permitted a parenting strategy that landed DD in the emergency room a few dozen times annually.

KWIM?

Learned helplessness can come from a variety of places.    So I think that this is an interesting phenomenon to study in FA children and adolescents-- I actually think it might be MORE interesting to study it in adolescents.  It's the loss of agency that seems (to me) to be what matters here.  It's an important thing.  I just don't care for the way that most psychological investigations have framed the questions thus far-- as "over-protecting" parents and the harm that WE do to our kids... as opposed to "this is necessary for physical health, but what are the consequences..."

[TT]

There is a fundamental flaw in both the title and conclusion rooted in the authors' decision to not categorize anaphylaxis as a disability.  It could be incredibly useful with a shred of common sense and logic applied to highlight the need for accommodations, that they work when used and that effective, appropriate accommodations for strict avoidance lead to independence with no clinically significant difference than non-disabled peers.

I would try to see it from the investigators' point of view but I can't get my head that far up my behind.  Quite frankly, I don't even know if Dr. Dahlquist had appropriate accommodations in place for such an experiment on children with a life threatening disability.  I have no idea how she could not consider demand artifacts in place due to the necessities for strict avoidance in an unknown setting with strangers.  At the very least have it done in home environment as a control.

People, please don't volunteer for such "studies".  Especially if it provides no benefit to your children since they cannot give informed consent to the research. 

[Macabre]

True TT.

Researcers: Tell me that learned helplessness was involved when I realized my son could read at age three that I showed him the word "peanut" had him start reading labels. He was learning helplessness alright when he learned how to use his Epi at age five and he begin training others. Also when I told him if he were ever kidnapped he could use his Epi in the neck or face of the person who was harming him in order to get away.

He was learning helplessness when he had to carry his own meds from class to class, when he had to say "no, thank you" when friends or adults offered him cookies or cupcakes and when he had to write thank you notes for food people gave him that we tossed in the trash can.

What a piece of work.

[PurpleCat]

Luck of the draw perhaps, but DD wasn't like that.

[GoingNuts]

Neither was DS.

No precious snowflakes here. 

[becca]

"The researchers didn't see any differences in requests for help among the five- and six-year-olds with and without allergies.

There were also no differences between the groups of kids in the number of indirect requests for help with the more difficult puzzle or the number of direct requests for help for either puzzle, according to the results published in the Journal of Pediatric Psychology."

So, where is the problem??

[CMdeux]

...in the experimental design and basic grasp of the meaning of "statistical significance" among the average psychology researcher involved in such studies? 




Oh.  That was a rhetorical question, wasn't it?   

[SilverLining]

"The researchers didn't see any differences in requests for help among the five- and six-year-olds with and without allergies.

There were also no differences between the groups of kids in the number of indirect requests for help with the more difficult puzzle or the number of direct requests for help for either puzzle, according to the results published in the Journal of Pediatric Psychology."

So, where is the problem??

That's what I said. ^^^

Clearly they weren't watching my child!

Maybe they were watching yours at five.

The researchers didn't see any differences in requests for help among the five- and six-year-olds with and without allergies.

If children at three and four there is a noticeable difference in them indirectly asking for help, maybe it's just that those parents are, overall, more engaged with their children.  Because, apparently, a year later they are just as independent.

So....what's the issue?

[becca]

Great minds, SL. 

[SilverLining]

Great minds, SL. 

Sorry to bring you down to my level.

[TT]

Tautological was my initial response.  Kids with substantial limitations of major life activities have limitations compared to peers who don't. 

I'm not the greatest champion of qualitative research because I think it gets a little too squishy when that pendulum swings too hard, but continuing investigation by asking "w" questions (what, why, where, who, when) about what necessitates strict avoidance espoused as current best practice would have shed light on what accommodations look like out of need, backed by quantitative evidence suggesting by five or six years of age the vast majority of kids have mastered some initial self-management. 

My husband and I are somewhat split on the effects of the current batch of correlative psych based research on kids and MOMS with food allergy.  Based on his position as a peer reviewer for human behavior and psych, he's rather disgusted at the level of bad science from study design, conclusions, biases.  He's male.

What I see as a female differs from his perspective because I don't have male privilege.

What I see is a continuation of what started with the Christiakis *op-ed* that it's all made up by anxious, hysterical women which led to the Joel Stein ill-fated, widely publicized character assassination of parents up until the awful moment Stein's own child ended up experiencing anaphylaxis from nuts his father fed him.

Oh, the new studies mimic good science.  They'll have the minimums for publication but in my opinion they are making it to the airwaves not on their own merit because the data analysis is so darned good, it's because of the subject matter itself.

The public wants, no, needs, to see helicopter moms as the growth stunting cause of silly food allergic children who should be weeded out by Darwinism anyhow.  They need our kids to be three year old adults who can self-inject and shutter themselves in a corner keeping the disability hidden in order to not disrupt the darling 55-75 percentile who are bright, fully able, but not by standard deviations beyond the median.

In the first wave food allergies and anaphylaxis were an emerging problem dogged by ignorance that could be forgiven due to how novel allergic disease is.  While not exactly kind towards fellow man it's understandable that society would hope it was temporary therefore a matter of short term inconvenience that would go away.

That game has changed from problematic to epidemic.  I don't know about the rest of you but I don't need more correlative half-arsed psych evals by underqualified* individuals who don't bother to check themselves for bias or other flaws.  I'm also out of passes to give lazy researchers who can't bother to understand this under the lens of disability without mitigating measures, without any medical device or substance for prevention.

Let me finish this thought with a real life example of unintended consequence.  Testing for helplessness or true developmental delay takes a lot more than one or two puzzles.  The circumstances of testing are also, by default, an artificial recreation of a natural environment for the purposes of measurement.  Our team of developmental specialists are combo MD PhDs in a research facility at a large teaching hospital inside of university.  They often use food.  They often test on things related to eating food as a tool for measuring behavior.  The rooms are full of food residue.  The therapists rely on food use for therapies and for testing.  Hold the candy, count the candy.  Reward with pudding. 

Erroneously attributing cause to strict avoidance, which is best practice, across the board will have a viral effect transferring ignorance to others in the field.  I've had intense sit downs to educate our developmental MD PhD who had a come to reality moment with the allergist about what anaphylaxis is, what allergies are not, and really how much of an unavoidable toll constant threat assessment takes in the ability to perform THEIR tests under dangerous circumstances without proper accommodations for the disability.

Milk allergic child taking a test with room covered in milk crackers, was to be offered pudding by a therapist, must handle manipulatives by other kids who were eating his most potent allergen, all the while too delayed neurologically and too young to comprehend the abstract danger.  Test questions include situations drinking milk and eating ice cream. 

The time on the clock has run out for doctors, researchers of any stripe to remain so ignorant of disability when information to the contrary is so easily available to all of them.  Everyone wants to be the king here with fractured dominion over how the course of the disease should be managed.

Mitigating measure
Cure
Treatment

Give me ANY of those that are FDA-approved safe, effective and prove to remain safe and effective in perpetuity backed by longitudinal data for all with the allergic disease.  Until then swallow that dose of reality that it is a disability needing accommodations in behavior and decision making, that there are no mitigating medications, and that what could have been hoped to be a transitory inconvenience caused by Munchausen mothers has become epidemic reaching the children of famous male skeptics like Stein who learned the hard way.

*underqualified in terms of education and training related to a specific disease making unqualified judgments related to the disease, and showing no inclination to collaborate with a professional who is qualified, or should add a qualified legal professional when indicated

[CMdeux]

{applause}

YESSSSSSS.   


As you know, I fall somewhere in between the two of you, TT.  I have abject disgust (borne out through many years of close proximity and collaboration) for those who call the squishy stuff "science" all the while ignoring their own biases or pretending that their experimental design is robust enough to mitigate those blind spots.  (Yeah-- mitigating measures.  Sure.  See what I did there?)

But I also can see that all it takes is a (very) few bad, bad apples in parenting anecdote to poison the well pretty significantly.  We absolutely DO NOT help ourselves when we compare food allergens to loaded firearms, people.  REALLY not when the child in question has no anaphylaxis history, and has been diagnosed via testing alone.

"At risk of" and "having a convincing history of" are very, very different things here. 

I'd like to think that no conscientious and loving parent would ever limit a child's developmental arc out of fear rather than necessity, but I do suspect that this is a thing some of the time.  Look, our anxiety thread talks about those things.  FAB's blog posts address it with her inimitable wit and intelligence-- and (I hope I'm not giving anything away here)-- the FAB used to be our site's Admin once upon a time. 

I also suspect that the world that FA people like my daughter live in generates either learned helplessness or unbelievable toughness.  I think it's probably binary.  It's a HARSH way to live; you don't control your own destiny day to day, and never will-- and the people who SHOULD care enough to bother sometimes place their own whims about food above your need to live and be safe.  Who could possibly not develop some baggage around that reality??