Tuesday, January 1, 2013

The undiagnosed generation

It’s so common now to hear people of a certain age (roughly mine) half-joking about the diagnosis they would have gotten if they had been children today. It’s usually ADHD or Asperger’s, which I suppose makes sense, given that those diagnoses (as labels) didn’t exist when we were kids, and have more recently been diagnosed with increasing frequency. I say people are “half-joking” because it’s never quite clear whether they’re just engaging in comic hyperbole, or whether they’re actually indignant that they would qualify for a diagnosis, or indignant about not having gotten one. Many of these people are successful in their jobs and happy in their personal lives. Most of them, in my experience, are men.

The joke is clearly true, at least as to many people (though not necessarily those who are joking about it). Many of us would have been diagnosed and treated for mental disorders if we had grown up today. There are, of course, many people who have been diagnosed as adults, and I assume that many of them are glad to finally have received treatment. Yet there must also be many, many adults who would have been diagnosed and treated as children under today’s standards, but, having been born too soon, have gone through life without a diagnosis – and have managed, for better or worse.

I don’t doubt that some kids are better off with treatment, but when I see the numbers – one out of eight boys has ADHD? – it’s hard for me not to think that we must be overdiagnosing kids. (See this post.) In any event, what a peculiar phenomenon: a big chunk of society, having grown up largely without diagnoses, watching as the rest of society is diagnosed and treated at much higher rates. What should we make of it? Does the undiagnosed generation see itself as worse off for having been born too soon? Or would they be reluctant to trade places with the today’s kids?


David said...

There is a lot to be said for early diagnosis and intervention. But the often miss out on the risk of false positives. We're paying more attention to the harms that false positives cause in some types of screenings (breast, prostate); I wonder if the same will be true with ADHD and the autistic spectrum.

My son didn't talk "on time," and he didn't know how to wave when he was supposed to, so we took him to a developmental pediatrician at 18 months. The doctor was very alarmed and thought he was on the autistic spectrum. We began services and enrolled him in an early intervention program. It quickly became apparent as he hit 25 months or so that he was not on the spectrum. But they determined that he had something else: sensory integration disorder and didn't know where his body was in space. They also noted that he couldn't calm himself down and would have lifelong problems controlling himself. As a result, he continued in early intervention and began occupational therapy.

He seemed to be doing great to us. But the early intervention center said he was not doing well at all. He liked to run around around tables. He was often not "on-task." And he loved to run out of circle time to flush the toilet. He could never handle regular pre-school, the developmental doctor on staff insisted, and would need special ed for at least 3 more years.

He behaved the same way at the "mommy and me" program I took him to once a week. I spent most of the time chasing after him as he ran down the hall and out of the room. But the teacher told me she knew a mathematician who was just like that as a child, and that the energy he displayed would serve him well in life.

We finally decided, in a testy meeting with the early intervention director and the staff doctor, to defy their advice and enroll him in regular preschool. After two months there, he did just fine. A year later, we also dropped the occupational therapy -- only to be treated to a scathing final report documenting what a terrible thing we were doing to our son, who they said had a significant sensory integration disorder.

By age 3 or so, he was speaking clearly and fluently, with a surprisingly large vocabulary. We enrolled him in karate, which did more for him than all the OT ever did. The energy he has has indeed served him well; he's now 10. And the sensory integration disorder diagnosis? Wholly bogus: I noticed that he had a great sense of balance early, and he's turned out to be a very good athlete to boot.

The moral of the story is that overdiagnosis can be a real problem, and it causes parents a lot of unnecessary pain. The therapy-industrial complex, to be sure, does a lot of good. But not entirely good. They seem to see pathology too far into the normal range, especially if you don't fit the standard mold.

Chris said...

David -- Thanks for that comment! I agree that, while the trend toward greater early intervention has some positive aspects, it's also accompanied by an unfortunate narrowing of what is considered to be "within the range of normal," and I think it reflects a kind of intolerance of difference.

I wonder how many parents would have been able to withstand the kind of pressure you describe. And the qualities that our schools now seem determined to instill -- deference to authority, obedience, conformity to "expectations" -- are exactly the ones that would make it hard for someone to think independently in that kind of situation.

Doris said...

Hi, Chris. I am back in town from winter break travels and looking forward to seeing the January blogathon unfold.

An interesting anecdote on the topic of this post. While we were away, my spouse visited a childhood friend who has a four-year old son. About two years ago the boy had been diagnosed as autistic, but just recently a different team of doctors performed some testing and came back with a diagnosis of severe epilepsy--as in seizures something like every 30 seconds. In and of itself the anecdote doesn't speak clearly to the question you pose about whether we are or are not better off raising children in a world with a fully elaborated "therapy-industrial complex" (to use David's apt phrase). But it is interesting to see how the rise of some diagnoses (such as ADHD and autism) may be coming at the cost of missed diagnoses for more "traditional" problems.

LAB said...

There is little tolerance for difference in schools today, which I think is what's behind some of the rise in ADHD and Asperger Syndrome as academic labels. Having said that, my ASD son missed out on early intervention services because we didn't know these existed and nobody bothered to tell us. So we wish we'd had what David's son had.

But what really are the services provided by the average public school? Sensory Integrative Therapy (that whole "finding your body in space" thing) provided by occupational therapists is often the first thing thrown at ASD kids by public school or private providers, but it isn't an evidence-based treatment. Kids generally enjoy this stuff (swinging, spinning, "deep pressure" massage), so you don't hear many people calling it out for being BS. But it really is BS. The other services offered by our school were...? They allow these kids extra time to complete work, but still get angry with them for being slow. They supposedly assist these kids with social skills, but still get frustrated with them when they behave in an anxious manner in the classroom or cafeteria. We found the services in our public school to be useless, if not downright counterproductive.

For any parent worried about a child's development, the one thing I would ask is this: Are the issues getting in the way of day to day life? If a child just likes to run around a lot or just isn't "on task" at age two or three, that's not a red flag for anything. ASD is pretty extreme in most cases, even Asperger Syndrome, which many people consider "mild." It isn't. We're talking about kids who can't look at you when they talk, who don't play appropriately with toys, who lack joint attention (if you point at something, they can't follow the invisible line from your finger to the object), and who have an obsessive interest that is all-consuming (if they love trains and you drive past a moving train, they might scream and scream until you pull the car over so they can watch the train pass). These kids are not just a little quirky or energetic, they have a pretty severe disability.

My ASD son is a treat. I love who he is and how he sees the world. But with testing and behavior modification like PBIS now the rage, our public school wasn't as accepting of him as I am. Which is one of the big reasons he no longer attends public school.

Chris said...

Doris -- That is an interesting twist on the issue. There's got to be an element of fashion to some of these diagnostic trends. My guess is that pharmaceutical profits and high-stakes testing have both played a role in driving what's fashionable in childhood diagnoses.

Chris said...

LAB -- I suppose there's no perfect system; there will always be both overdiagnosis and underdiagnosis, though one may predominate at any given time.

I think you put your finger on a key issue: acceptance. Acceptance doesn't mean you don't treat a real disorder. But even someone being treated for a real disorder needs to feel accepted, too. I think our culture is much better at the treating than at the accepting.

Dave Schwartz said...

Chris, thank you for this thoughtful post.

I'm not sure where I fall on this discussion. I was part of the undiagnosed generation. I clearly had ADHD from an early age, but my father dismissed it as "This is just what happens when kids get bored in school." I finally sought my own treatment after college and before grad school. The physician called it an easy diagnosis. I controlled my own fate, opting for techniques and life choices to try to control the ADHD instead of drugs. I didn't want drugs. The treatment led to instant dramatic changes, and for a while I was frustrated that my parents never addressed it while I was growing up. On the other hand, I had obviously made it to grad school without any treatment, so how bad could it have been?

Now I'm nearly 40, the father of three kids, and my wife and I have suspicions that our 6-year-old girl is ADHD. Her teacher first brought it to our attention by saying she reminded her of her son, who is ADHD and takes medication to control it. If our daughter continues to exhibit signs of ADHD and eventually is diagnosed with it, we'll be faced with the tough choice of whether to medicate her. It might really help her, or it might cause mental strain and anguish. Not medicating her could lead her to find her own way and deal with challenges -- the way it did me -- or it could hold her back from reaching her potential and cause mental strain and anguish. As a parent, that's a devastating thought.

There's diagnosis and overdiagnosis, and beyond that there's the consideration of what to do about it. How much is too much? And how little is not enough?

Doris said...

Hi, Dave. Starting from the time our 13 year old was in about second grade, her classroom and resource room teachers indicated to us that they thought she might qualify for an ADHD diagnosis. At the end of her third grade year we took her to a psychologist they recommended and, sure enough, she was given the diagnosis. We put her on meds for about three days before abandoning them. She was awake until the wee hours of the morning and just generally looked strung out. She also developed a rash on her legs. Continuing with the meds did not feel like the right decision for us at that time. Instead we ended up placing her in a small group homeschool program where the philosophy was that instead of altering the kid to make her fit the learning context, instead you look for ways to alter the learning context to make it fit the kid. Life has been soooo much better since we made that switch.

We haven't ruled out meds for all time, but I'm very glad that we took the road we did when she was younger. Interestingly, btw, we neglected to explain to her public school teachers that we had discontinued the experiment with the meds. When we went in for the spring IEP meeting (this was before we made the decision to pull her out), the teachers commented that the meds seemed to be making her more focused. LOL. We really liked the teachers. They were hard working and very, very committed. But you don't forget a moment like that--when you have to explain to them that the change they have witnessed is a placebo effect taking place inside their heads.

Good luck. The choices are tough ones--especially since they are ones that we are making for our children, not ourselves. When our daughter is ready, we plan to talk with her again about the option of medication and see if she would like to start weighing in on the decision.

Chris said...

Dave -- Thanks for the comment! Those are hard questions. I know there will always be tough calls, but I wish schools were a little more willing to consider the role that the school environment plays, especially since "expectations" seem to be ratcheting up in the era of NCLB.

Doris -- You said a mouthful: "Instead we ended up placing her in a small group homeschool program where the philosophy was that instead of altering the kid to make her fit the learning context, instead you look for ways to alter the learning context to make it fit the kid. Life has been soooo much better since we made that switch."

I think when parents hear a statement like that, they can't help but pay attention, and at least wonder whether it might be true for their kids. But when the school system hears it, the reaction seems very different. Why? What are they doing in that "small group homeschool program" that couldn't be replicated in a public school?

KD said...

I think we've lost sight on what is normal for kids, especially at earlier ages.

To the extent that younger kids today spend more time, at an earlier age, in school like settings, there is sometimes an expectation of behavior that isn't realistic. I have to think this is part of the problem.

Curiously, for some of the kids who probably need and enjoy recess the most, the punishment for their
behavior is....taking away recess.

To the extent that this is a gender issue, maybe there is a better way to educate parents about what is normal, how the genders might sometimes be different, and what kids genuinely need in terms of outdoor play etc. I had a couple moments as a parent where I wondered if my son could have ADD, without perhaps having the reference point of knowing that his behaviors were more typical for a boy.

At one time I couldn't have imagined writing that boys and girls can be different, and might have different needs. It does seem sad that so many boys are medicated.

Chris said...

KD -- I agree that we've lost sight of what's normal for kids at different ages. Parents are put in an impossible position: even if they think that the school environment, and not the kid, is the problem, it's still true that they can change the kid and they can't change the environment.

If you wanted to create a school system in which kids would end up over-medicated, America's current system is the one you'd create.