Doctors need to get comfortable with intellectual disability

By Louise Kinross

Global developmental delay (GDD) isn't a long-term diagnosis, write two doctors in a commentary piece this week in The Journal of Pediatrics. So why does it appear so frequently in medical charts across a person's lifetime?

"Disability becomes the Lord Voldemort of clinical medicine—something so terrible it ought not to be named," write Dr. Eyal Cohen, a pediatrician at SickKids in Toronto, and Dr. Amy Houtrow, chief of pediatric rehab medicine services at Children's Hospital of Pittsburgh.

The doctors note that clinicians contribute to the stigma of intellectual disability by continuing to use the label of GDD. They attribute this word choice to doctors' unconscious bias against people with intellectual disability, to not wanting to upset parents, or to worrying that they don't have adequate time to explain the disability. "The unwillingness to name intellectual disability is widespread in medicine," they say.

They note that the word delay often causes confusion in parents, who assume it means their child will eventually catch up to peers.

Doctors need to be precise in using the term intellectual disability. "Disability is not a disaster," they write. "People with disabilities live with the realities of their disabilities every day, and our inability to acknowledge this does not stop them from being real; it just stops us from providing the best care possible."

The authors offer a suggested dialogue between a doctor and parents, who say they didn't realize their child's problems would be permanent.

It includes saying "I would be happy to talk more with you about the disabilities that he has...I know having these conversations can be stressful and sad."

Something that is missing for me, as a parent of a child with disabilities, is the message that my child has value. It's one thing to tell parents that disability is not a disaster, it's another to encourage parents to consider what it is that gives humans, and their child, value. I've written about this here: Why parents get hooked on 'normal'.

But I wonder how many doctors have truly had the time to sit and ponder human worth, either as a medical student or as a clinician? Is our value tied only to what we do? Is it something to be earned through how we perform? Is it our paycheque, our IQ score, or how well we fit Western conceptions of beauty and athleticism?

If we can't measure up, does our value as a human being plummet? 

Because if you haven't actually wrestled with these questions, I think it will be hard to convey to parents that their child with an intellectual disability has value. 

It's not something you can fake. 

It reminds me of an interview we did with the author of a study that looked at 68 transcripts of conversations between doctors and parents discussing life and death medical decisions for their children.

Lead investigator Dr. Tessie October, who is a pediatric intensive-care doctor at Children's National hospital in Washington, D.C. said: "We don't think of how we talk with families as being a procedure, in the same way we think of putting in a central line or a breathing tube." As a result, it's not taught and evaluated in the same way in medical school.

I think that needs to change, whether the topic is describing high-stakes medical decisions to parents, or telling them that their child has an intellectual disability.

Because that kind of medical training benefits the emotional health of families and doctors alike.