Monday, October 15th the ABC Network show The Good Doctor aired an episode involving a patient with fragile x syndrome. The patient was a teenage boy being raised by a single mom.
Seemingly right from the pages of fragilex.org, the Good Doctor himself accurately paraphrased the condition with four key points: it is a genetic disorder (✔) characterized by intellectual disability (✔), behavioral issues (✔) , and hyperactivity (✔).
The show's portrayal of said behavioral issues could be generally accurate-- depends on the individual. And to that point, it is not so uncommon for caregivers to not be able to provide the most ideal care. This episode did touch on the perspective of someone who is overwhelmed and who is not able to maintain the best, safest environment for herself and her son. It is simply not accurate to say that the parent is giving up. What they're doing is desperately trying to help their loved one to grow up... and to thrive. Having her child placed where he is surrounded by people who can help him is not giving up. It is facing reality. It's heartbreaking but it happens.
However the few times that this character spoke his quick, clear communication was highly unrealistic. The way he addressed the hospital staff instead of his mom to ask if the surgery was going to hurt, in reality, would be extremely unlikely. Later in the episode, after we learn the mom has hurt her hand (it is implied during a situation with her son), and he is beside her as the doctors determine they need to bring her to the OR this time he (the son) becomes overwhelmed. The doctor tries to help and the young guy with fragile x ends up in a fight-or-flight mode and consequently punches the doctor. A short while later they're sitting at a small patio table together outside-- the fragile x patient and the doctor. He offers the doctor an apology for hurting him-- he says he is sorry. The doctor asks him if he has a coping mechanism when he gets overwhelmed. The boy with fragile x looks at the doctor, makes eye contact, and says, "Do you?"
Once again their exchange (albeit short) was not at all typical for how a person with fxs would communicate. Especially someone in an unfamiliar setting surrounded by unfamiliar people... who had to go to the hospital unexpectedly... just had his own procedure and now suddenly his mom is having one too. The entire context would have greatly affected him. The very last thing he would be doing is asking the doctor such a level-headed mature question. If not for the fact that this teenager was carrying around his favorite plush, you might argue it would hardly be obvious he is cognitively impaired.
And then after a brief denial, the mom begins a conversation with her son. They're not only still in the hospital but basically as far as he's concerned what she is about to say is completely coming out of nowhere. While the viewer can not hear the exchange we know it's about finding a different environment for him. He is intensely upset for a moment, yells at his mom to stop it, but then leans in for a hug. This tough-love moment was again, beyond inaccurate.
But the least accurate detail is what the character playing his mom said back at the beginning of the episode. She tells the doctors that her son was a beautiful baby and that he walked and talked... and then after the age of 2 it was as if he started going backwards. I have yet to hear of a case of fragile x syndrome where an individual was actually developing at a typical progression and then suddenly not.
Fragile x is something that people are born with and the delays and many other characteristics are present at birth. Of course more traits become evident as they develop but they will not begin life meeting all of the typical milestones on time, and then stop.
I suppose all in all any fragile x awareness is better than none... and the doctor's character does define it well... but that's about as good as it got.
For more information please visit The National Fragile X Foundation at fragilex.org
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