Iatogenic Harm

I have recently subscribed to David Kaufer’s (father of a nonspeaker) Substack channel, and his latest post, The Wrong Question, really hit a nerve.  

As many of you know, in 2020, just before I started Mouth to Hand in my basement, my nonspeaking son, Alex, began to change.  First it was just increased anxiety but over the next two or three months, his behavior became increasingly erratic and disturbed, and for the next 5 years, he became a raving, screaming lunatic.  I don’t use that kind of language lightly, but there are no other words for it.  During those five years of a hell that is indescribable, he was hospitalized for lengthy stays 5 times, we had more visits to the ER than I can count, I took him to 55 private physicians searching for answers. And the answers I got ranged from some kind of inflammatory encephalitis to a mysterious, degenerative genetic disorder to Lyme Disease.  He was put on massive doses of everything from thorazine to antibiotics to immune suppressors so powerful he had a resurgence of chicken pox (he’d been vaccinated as a 1 year old).  

And through it all, he only got worse. 

Why?  Because he was being treated for illnesses he DID NOT HAVE.  

In the summer of 2024, he stopped eating. This had happened before, but for only a few days at a time. This time, he did not touch a bite of food for 5 weeks.  He was dying.  I took him to the ERs at major hospitals all over Westchester and Connecticut - no one helped.  Finally, in desperation, I reached out to other moms.  They made call after call to other moms, who made call after call…and one night, about 10:00 pm, I got a call:  a friend of a friend of a friend was Dr. Lee Wachtel, at Johns Hopkins School of Medicine:  “Your son has excited catatonia.  Take him to the ER at Long Island Jewish Hospital.  There’s a doctor there who knows what to do.”  

And low and behold:  WHEN ALEX WAS TREATED FOR WHAT HE HAD, HE GOT BETTER.  

Back to David Kaufer’s blog post.  It opens with this:

Imagine a child develops a persistent cough. A physician mistakenly concludes it’s caused by allergies and prescribes antihistamines. Months later the child is still coughing, so additional allergy medications are added. The real problem, however, was never allergies. It was asthma.

The medications weren’t “bad”; they were simply being used to treat the wrong problem.

The greatest harm came not from the medications themselves, but from months spent treating the wrong condition while the real one (in this case, asthma) went unaddressed.

Medicine has long recognized that treatments can unintentionally contribute to illness or disability. This phenomenon is known as iatrogenic harm.

What if communication science deserves a similar framework?

Iatogenic harm was not a term I had ever heard before. Simply put, it is harm caused by the care a patient receives which, of course, includes the time they remain ill for being treated for something they don’t have. 

Now let’s refocus on how our nonspeaking children were treated by the education system.  

David writes:  “...we’re asking a much more fundamental question: could years of intervention, based on an inaccurate understanding of why a person cannot communicate, unintentionally create additional barriers and their own kind of real harm?”  

What David’s piece is about is asking the right question: does the fact that our children spent years - many spent decades - being treated for cognitive disability when, in fact, what they have is a motor disorder, result in iatrogenic harm?  His post is not a judgement call.  Nor is it a tirade against the speech pathologists, special educators (I was one of them!), ABA practitioners, occupational and physical therapists, etc. who spent years working to help our children. Most of these individuals are not just well meaning - they are devoted to their students, and trying to help as best as their current training allows!  The problem is with that diagnosis:  “low functioning autism” - which the powers-that-be have now retitled, “profound autism.” The incorrect diagnosis means that our children are consigned for life to therapies that treat something they do not have.  Not only do they  not get better (i.e. gain the ability to effectively communicate), they suffer the consequences of not having effective communication:  inappropriate educational classes, missed opportunities, emotional trauma, etc.

As Alex has pointed out, once that label is slapped on you, the rest of your life is set:  you are put into classes for the cognitively disabled and given ABA therapy. When you fail to progress in that (motor-based task after task), it proves that you are cognitively disabled and need…ABA.  You fail…which proves you need even more of it…etc. You are stuck in a vicious cycle of failure. Then you’ll leave school at 21, and spend the rest of your life in daycare. 

So does the assumption that these millions of individuals are not communicating because they are cognitively impaired (when it is simultaneously accepted that nearly 90% of them have a motor impairment!) cause iatrogenic harm?  
Damn straight.  We have been treating them for something they do not have.

The only way out of this eternal loop of failure is to get meaningful research published that demonstrates that the educational and medical systems have been basing the model of care for nonspeakers on a false premise. This is the upshot of David’s post - and this is why I am trying so hard to get researchers and technology here.  

When Alex was finally treated for what he had (catatonia), he got better.  His life (and the lives of all of us in his family) improved by an infinite factor. When I understood that he had a motor disability which prevented communication, and “treated him for what he has,” he learned to type for communication and his life (and the lives of all of us in his family) improved…by an infinite factor.