What's Normal, What's Not: Messing with Mental Disorders is Messy

What's normal? What's not? What's not normal enough to be a disorder? What's further evidence some parents have simply lost their perspective?

Ah, the fuzzy border between normal and disordered...the hot topic among mental health peeps these days as we await the new edition of our bible, the Diagnostic and Statistical Manual of Mental Disorders (the DSM V). 

And there are some rather big changes underway, including a revamping of the autistic spectrum.

So when the man responsible for the last edition (DSM IV) laments the consequences of what he and the task force thought would be minor changes back in 1994 - well, we got to pay attention:
...I learned from painful experience how small changes in the definition of mental disorders can create huge, unintended consequences...Our panel tried hard to be conservative and careful but inadvertently contributed to three false "epidemics" -- attention deficit disorder, autism and childhood bipolar disorder. Clearly, our net was cast too wide and captured many "patients" who might have been far better off never entering the mental health system.
Man does not parse words.  False epidemics.  The title of his op-ed says it all. It's Not Too Late To Save "Normal".   Like to see this guy, Allen Frances, speak at an Autism Speaks conference.  Guy's professor emeritus, a former chair of the Psychiatry Department at Duke*.   He does admit casting a wide net has positive consequences as well, like getting services to children who'd be otherwised missed.

What's got him so worried in the proposals for the new edition?
..."Attention deficit disorder" would become much more prevalent in adults, encouraging the already rampant use of stimulants for performance enhancement. The "psychosis risk syndrome" would use the presence of strange thinking to predict who would later have a full-blown psychotic episode. But the prediction would be wrong at least three or four times for every time it is correct -- and many misidentified teenagers would receive medications that can cause enormous weight gain, diabetes and shortened life expectancy...a new category for temper problems could wind up capturing kids with normal tantrums. "Autistic spectrum disorder" probably would expand to encompass every eccentricity. 
Okay, so maybe he's a bit overdramatic on the proposed changes to the autistic spectrum but he's got a point.  What we define as disordered behavior carries big consequences for society and individuals.

This past week in the media two other voices broached our "what is a disorder" dilemna.   

Judith Warner's gotten around shilling her new book (We've Got Issues: Children and Parents in the Age of Medication). Apparently she started out years ago wanting to write a book about how we're giving out too much Ritalin and Prozac but she changed her opinion after doing some research.

Now she argues children don't get enough medication or therapy - lots of children fall through the mental health safety net and are not treated at all.  Heard her on NPR talking about how we used to believe kids didn't have bipolar disorders or depression.  It's true, but now we've perhaps swung too far in the other direction, especially with conflicting evidence about whether powerful meds actually help these children not to mention the long-term side effects of anti-psychotics.  In fact, some folks believe we're too quick to medicate poor children -instead of providing them therapy. 

As for kids falling through the cracks, that's not simply a matter of public or professional awareness of these disorders, but also a availability of services.  There's also the perenial problem that some children most at risk for serious disorders come with parents struggling with these disorders.  For these families getting their kids to therapy on a regular basis is a challenge.

So these are three separate issues she's swinging at here. 
  • What is bi-polar disorder, or autism, or depresssion in children.  
  • How do we best treat them. 
  • How do we reach the kids perhaps most at risk.  
Just because some kids fall through the cracks doesn't mean we're not over-medicating or over-treating others.  Well-off kids run the risk of too much treatment, poor kids, too little. 

Speaking of too much pathologizing, our next issue - treating rather normal childhood nuisances as disordered behavior worthy of treatment, in this case, occupational therapy.  Comes from a New York Times article on occupational therapy (OT) in the most unlikely of places, the Style section.  Evidence OT's become fashionable. 

Boils down to this.  Should so many kids be going to occupational therapy these days?  A couple decades ago OT was for kids with cerebral palsy and spina bifida and other severe disabilities.  

A Brooklyn pediatrician drew up the dilemna facing parents:
“On one hand, I think it’s perfectly in line with the contemporary trend for parents and educators to seek high-priced specialists to treat the routine problems of childhood,” said Dr. Philippa Gordon, a popular pediatrician in Park Slope, Brooklyn, who is a medical adviser to the highly opinionated Park Slope Parents Web site. “On the other hand, I see that early intervention can keep little problems from becoming big ones.”
But my favorite take-away comes from a father slumming it in the country-club set:
“Even with the economy like it is, the hottest question when we socialized at our country house this summer was not what country club do you belong to, but who is your child’s O.T. back in the city. And how can I get an appointment?”
I get the parental anxiety and stress about the kids keeping up.  I do, I really do.  I feel it myself.  But when OT lands in the Style section right below the Lady Gaga club scene, when it's the talk at the country club, well, I start wondering if we've gone too far.  A mild fine motor delay, if we even want to call something so common a delay, is a nuisance.  Not a big problem.

So, just to keep it all in perspective, let's put it on a spectrum from mild nuisance to severe disorder:

Not holding a crayon properly.......................................Hearing voices, Suicidal thoughts.

Nothing like a little perspective. 

*For full disclosure, back in the day I worked as a lowly research assistant in the Psychiatry Department at Duke, doing clinical interviews with children who'd passed through the court system.  My little B.A. in psych did not in any way prepare me for those situations, the dysfunction, the families.  So when I think about our current dilemna with children on the borders of autism or ADHD - dare I even mention a minor speech delay or a fine motor one - those issues, those kids, they pale in comparison to the kids in crisis, the ones teetering on the edges of a life-long depression, bipolar disorder, or schizophrenia.   



Liz Ditz said...

Glen R. Elliott, who wrote "Medicating Young Minds" said something like this in a conference presentation: "Are we overdiagnosing and treating ADHD? On the other hand, is ADHD underdiagnosed and undertreated? Bewilderingly, the answer to both questions is simple: Yes."

Polly Palumbo, Ph.D. said...

So true. Depends on which population, even family we're talking about, right? I'm sure we all know kids who we think would benefit from some Ritalin or OT and some we suspect might be better off without.

Robb and Rebecca said...

This is such a fascinating discussion which highlights, among other things, the relative youth of this field. I so look forward to the day when my kids are adults and we have a few more decades of research and science from which to benefit. My son, to whom I've referred in previous comments, carries two of the diagnoses mentioned here. He's on the Autism Spectrum, and has very clear AD/HD. We could not go an hour, let alone a day or God forbid an entire summer without his medication. We're incredibly grateful he falls into the diagnostic categories he does. It has enabled us to get help for him in the medical community and at school. But, both my husband and I have lots of experience in the field, both with Masters degrees in Social Work, and the aforementioned little B.A.'s in Psych, which no more prepared us for counseling children in inpatient psychiatric units than helping our own son. Even with our professional backgrounds and toting our son's diagnoses, we've had trouble accessing any additional services in the community for him because of the relative subjectivity involved in diagnosing and treating kids like him. I'm glad they are again revising the DSM. I like progress, even it it's slow, calculated, and self-correcting. I also appreciate recognizing consequences of diagnostic criteria, both positive and negative. Thanks for bringing this up!


Polly Palumbo, Ph.D. said...

Hi Rebecca,

Thanks for your insightful reminders about what it's like getting help for children, even when you're working in the field. And for the reminder that the mental health professions are doing some good, even though we sometimes lose our way. And yes, it is a young profession - and getting better over time. As you know, psychology and psychiatry get disrespected all the time, especially from the harder scientists who doubt we've generated any real knowledge - so it's nice to hear in real terms, how it has proved beneficial. Please keep the insights coming!!

TheRextras said...

Nothing to add but that this is really good, Dr. Polly. I might have to refer a few readers over here. Barbara