NYT on polypharmacy in the young

I imagine Gardner Harris started this New York Times Health review thinking he'd expose a terrible practice of indiscriminant medication of the young. However he began, its obvious by the time he'd met with a few families and experts he'd been humbled. These families and children are suffering greatly; there are no good answers.

The one lesson we can all draw is humility. The title "proof is scant" is unusually well chosen and inarguable. We just don't know. Each of these children is an experiment of one.

If we funded psychiatric research in this country (the GOP appears to have an ideologic opposition to pyschiatry) we'd treat each child as an experiment, and gather every bit of data we could on risks and benefits in a national database with robust privacy protections (anonymized data). We definitely can't rely on the pharmaceutical companies; we've found negligence and possibly fraud in their research practices in the past few years.

Until we get a government that respects science in general, and psychiatry in particular, progress will be slow indeed.

A novel approach to reading: Big Guy Books

A small group of entrepreneurs has assembled a series of photojournalist fiction books under their own label:

About Us - Big Guy Books

...Big Guy Books, Inc, is built on the belief that literacy is a birthright for every child. But in a world of highly visual, fast-paced video entertainment, we are losing a generation of young children to growing masses of “reluctant readers.” It is our mission to create books that are stimulating and engaging enough to recapture these children and instill in them the joy of reading and the thrill of learning.

The Time Soldiers series looks like a winner in our home. The photographs/cgi effects are very engaging, and the narrative is quite well done. They're worth a look for the reluctant reader. I hope they succeed -- and that they manage to stay independent for a while.

Update 12/9/06: We bought the T-Rex (book 2) softcover -- and the pages fell out on first reading. It's a thin glue binding strip. I'll see how the publisher responds to my email, in the meantime if you buy one of these books, buy hardcover and buy at a bookstore where you can check the binding

Update 12/23/06: Big Guy Books quickly offered to swap my paperback for a hardcover, and I was ok with that -- just didn't have time to do it. Then they sent me the hardcover anyway, and a bit more. Really, it was more than was needed to mollify me. Turns out their printer was incompetent and they've since fired them. They promise the problem is fixed in the newer books, but if you're buying the early books I'd recommend either hardcover or buy them from a bookstore where returns are simple. Not all the early softcovers are defective, but you may not be able to spot the problem printings right away.

Nature and nurture: when opinion meets reality

I enjoyed this self-deprecating and British-humor style post on how one's strongly held opinions can change when reality strikes:

Whitterer on Autism:

... I have always had very strong views on the nature v. nurture debate and closely align myself with the nurture camp. Or at least I did until I was presented with two autistic boys. I quickly changed allegiance to the opposite camp...

One of my favorite stories about parenting comes from old friends of ours. After four easy children they were quietly persuaded they were brilliant parents, and were modestly helping others learn the right way to do things. Then they adopted a fifth child. That was the end of certainty.

Now, I do think they really were exceptional parents -- but they had overestimated how much of their children's behaviors were a result of their efforts vs. a child's temperament. Human temperament (not the same as character, but related) is very much determined by genetic and intrauterine factors -- adoption and special needs children teach this lesson quite quickly and firmly.

Remember this the next time you quietly think what a bad parent someone must be, or what a good parent another person is. I've been told I'm a brilliant parent when out with one child, and ignored attempts at withering stares with another child. As nearly as I can tell brutal education has made me a pretty decent parent, but the praise and scorn were misguided.

You can't judge parental skill without knowing whether they're playing in the minor leagues (easy child) or the majors. I play in the major leagues, so my game has to be sharp. If you played in the majors you'd be good too.

Whitterer on Autism: a library of techniques

I came across this blog through a comment on an older post of mine. Whitterer on Autism is a more personal blog than this one, with much discussion of what works and doesn't work. I think it will be a handy source of new techniques to try. I've added it my own bloglines collection.

Psychiatric diagnoses: 200 years behind

I've been saying this for years, so it's nice to see that academic psychiatrists, at least, are saying it publicly:

What's Wrong With a Child? Psychiatrists Often Disagree - New York Times

..."Psychiatry has made great strides in helping kids manage mental illness, particularly moderate conditions, but the system of diagnosis is still 200 to 300 years behind other branches of medicine", said Dr. E. Jane Costello, a professor of psychiatry and behavioral sciences at Duke University. "On an individual level, for many parents and families, the experience can be a disaster"

The NYT article is recommended reading for every family with a special needs child.

The relatively meaningless of pyschiatric labels is not new. The family of DSM manuals were all about trying to get a relatively solid grasp on the fluid and sometimes formless world of human cognitive and behavioral variability. Reams of books have been written about social construction of psychiatric diagnoses; many have been misguided but they're not without an element of truth. Psychiatric "diagnoseses" have been much more craft than science.

Psychiatrists are not to blame for being unable to label the formless -- though they could be dinged for not speaking up more clearly about the nosologic (naming) problems they face. In their defense patients and families don't usually want to hear than we're flying blind in this domain. A facade of certainty can be mutually reasurring.

Most of all, labels are about getting services, managing friends and relativelys, and placating schools -- we use what works for those purposes. The last anectdote in the article really tells the whole story:

Camille Evans, a mother in Brooklyn whose son’s illness was tagged with a half-dozen different diagnoses in the last several years, said she concluded, after seeing several psychiatrists, that the boy’s silences and learning difficulties were best understood as a mild form of autism.

“That’s the diagnosis that I think fits him best, and I’ve just about heard them all,” Ms. Evans said.

The label is not perfect, she said, but it is more specific than “developmental delay” — one diagnosis they heard — and does not prime him for aggressive treatment with drugs like attention deficit disorder or bipolar disorder would. He has not responded well to the drugs he has tried.

“Most important for me,” Ms. Evans said, “the diagnosis gives him access to other things, like speech therapy, occupational therapy and attention from a neurologist. And for now it seems to be moving him in the right direction.”

Access to other things, not too discouraging, not too scary. The label works for now and for this family, and, honestly, that makes it right for clinical use, if not for research purposes.

Psychiatric therapy will continue to be empiric at best -- try a diagnosis, try a therapy, try another. Most of the time it helps, sometimes it helps a lot. We're still in the stone ages, but functional MRI, gene analysis and other measures to ground the behavioral in the physical are slowly moving us into the bronze age.

Bottom line: humility is indicated. Good to have it.

PS. Psychiatrists should also stop blaming pediatricians and family physicians for assigning labels that others change. It's not like psychiatrics (or neurologists for that matter) can do any better. Remember - humility.

PPS. My guess? That behavioral disorders in children are particularly dynamic because they represent the combination of initial brain injury, ongoing injury, and unusually active ongoing reparative processes. Superimpose the immense brain morphing impact of adolescence on that and it's no wonder the best available treatment, and the most convenient label, will change from season to season.

Minnesota Special Hockey season is on: accepting new skaters

Minnesota Special Hockey's season has launched, but we're still accepting new skaters and those who'd like to learn to skate and play hockey. Visit us at our main site or the Announcements Blog.

Autism, Downs Syndrome, and college: NYT review

Fascinating. I'll try to update this later. There's a lot to say and comment on. I did smile when I read this comment on engineering:

Students on the Spectrum - New York Times

... Of course, high-functioning people on the spectrum have long attended college. Tony Attwood , a psychologist and author of “The Complete Guide to Asperger’s Syndrome,” tells of trying to spot the professor with Asperger’s when he’s on the lecture circuit. That is, unless Dr. Attwood is at an engineering school, in which case he tries to spot the professors who don’t have Asperger’s.

There's a similar article on Down's Syndrome and post-secondary education. I'll comment on that as well.

There are implications for family financial planning and especially 529 plans for children with special needs.