Mon, 10 Aug 2026 22:17:06 -0400WeeblyMon, 03 Aug 2026 21:18:30 GMThttps://www.mouthtohandlearning.com/living-mouth-to-hand-judys-blog/iatogenic-harmI 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.  ]]>Fri, 29 May 2026 21:33:14 GMThttps://www.mouthtohandlearning.com/living-mouth-to-hand-judys-blog/the-dignity-of-independent-communicationThis week, one of my students wrote a blog post that I think is particularly important.  He talked about how much other people’s attitudes toward him affect his ability to control his own body.  He explains that getting yelled at for things he cannot control, only makes his OCD flare. That is, yelling at someone for their OCD will only make that OCD worse. Then he talked about the “secret sauce”:  being happy makes him better able to control his own body. I have heard similar statements from many students over the years.

Recognizing how our nonspeakers were treated all their lives (and continue to be treated by most of the world) hurts my heart - and gets me to thinking about the differences in students from the day they first walk into M2H.  One of my very long-time students, Kyle, came in today for an individual session and started writing a piece for a podcast.  He describes that moment when we were first introduced, “When I first walked in, hatred like you wouldn’t believe hit me: another teacher who thought I was a moron.” His mother had me hide behind a table to keep him from attacking me.  No joke.  

That same student is my big teddy bear now. 

It makes sense, of course.  If someone talked to me the way people speak to them, I’d be murderously angry.  If my experience of other people was nothing but condescension, humiliation and often fear, I would be as filled with hate as my student.  

All this to say, it brings to mind the people who say that communication that relies on someone else for assistance deprives people of their dignity.  
An article by Dr. Naomi Fisher  in the newsletter of the British Psychological Society states:  

“‘Presuming competence' sounds benign but it can pose significant risks. When we presume competence that is not present, we may miss the vulnerable person before us. We may not offer them the protection they need. When we presume competence, we may not help people learn the skills that they need, because we assume that they already possess them. To be inclusive we should presume the capacity to learn and meet the person where they are. Assuming that they are already competent does not do this.  

There are significant dangers to ignoring the words that people say and the way that they move their bodies, because of a belief system that says that these movements are out of their control. FC takes power away from nonspeaking people by discounting the ways that they independently communicate. It means that they may go unrepresented in the conversations that matter most in their lives.”
We are actually being warned that in presuming competence, we are not offering “the protection they need.”  

Let me pause for a moment to point you to the podcast, Amplifying Nonspeaking Voices, specifically the episode written by my student, Anthony.  In it he describes being molested by neurotypical students at his high school, in a case that was well publicized.  Of the 8 students in the class, only the 4 who were nonspeaking were molested.  Coincidence?  

not

Judy, you might say, that is just one anecdotal case…except that it’s not.  Without exaggeration, probably ⅓ of students here at M2H have been abused in some manner, including my son, Alex. But the Dr. Fishers of the world only ever worry about the few cases of false accusations from 40 years ago.  

Which brings me to the 2nd part of Dr. Fisher’s statement above:  “FC takes power away from nonspeaking people by discounting the ways that they independently communicate.”  Exactly what independent communication is she referring to? Not one of my students here had any real means of communication, other than - as Kyle says, physical aggression.  Or perhaps she means we should listen to their frustration at being treated “like morons” as we glorify them banging their heads on walls?  

OH LOOK!  HE’S COMMUNICATING INDEPENDENTLY!

She is right in one thing.  They most certainly “go unrepresented in the conversions that matter most in their lives.”  But it is not typing for communication that leaves them on the sidelines, is it?  

So my final question for those who summarily dismiss all spelling/typing methods with the old “it’s debunked” chestnut:

At this point,  thousands of well qualified professionals are using some type of typing method successfully in their work with nonspeakers.  Typing for communication is only getting bigger because it works.  We, who do this for a living, are well aware of the issues with them and never claim that things cannot be improved upon. (Me, I’m obsessing on our need for better technology.  It’s out there - we just need access to it.  That's a post for another day.)  So rather than dismissing our real world experience, why can we not meet half way and find common ground?  I would work with anyone who wants to help.  
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Why can’t they?]]>Thu, 07 May 2026 02:35:55 GMThttps://www.mouthtohandlearning.com/living-mouth-to-hand-judys-blog/debunkedNow the NY Times has allowed Dr. Lutz to post a thank you on their Facebook page, reigniting the frenzy on both sides.  

(What is better for a news media outlet than a heated, emotional controversy like this?  I would be willing to bet they have seen a marked jump in site visits and Facebook posts over this past week.  I reckon the only thing better for them is bad weather and bad viruses.)

Anyway, more of my thoughts for your enjoyment.

It is amazing to me that those who scream the word science the loudest are almost always the least scientific.  Science is a process of logic, and it seems clear that logic is not the strongest faculty in the opponents of typing/spelling.  

Rhetoric is NOT science.

So here is the question of the day:  how can something be “debunked” when scientific studies like Dr. Jaswal’s eye-tracking study are being published in major journals?   And who exactly is the authority to declare when something is debunked?  Is there an official Department of Debunking? Spelling/typing is not debunked according to Dr. Jaswal, a researcher at the University of Virginia.  It’s not debunked at Harvard, where recently an eye tracking study was conducted, I believe.  It’s not debunked according to Dr. Barry Prizant, probably the most famous speech pathologist in the country.  In other words - major authority figures in science say it is an area of legitimate study. 

So who says it’s debunked? 

The word “debunked” is a rhetorical catch phrase, but in actuality, it is 100% meaningless.  It sounds great - so authoritative.  So perhaps we believers of typing/spelling should remember that the best defense is a good offense:  I officially declare that the arguments against typing/spelling for communication are debunked!  

I have as much authority to declare that, pounding my virtual fist upon the table, as any other nonscientist.  

So let’s get back to science.  As I pointed out in my previous post, all science starts with an observation.  We observe our children typing, and they are typing things we cannot predict. How can something that is clearly working be not working?  Since I know it works - as I do it all day every day - I will formulate my hypothesis:  typing/spelling works to give nonspeakers a voice.  I think I have proven that hypothesis, so let’s move on to the remaining questions we have yet to answer.

No one on our side of the debate says that there are no questions.  We all KNOW there are questions surrounding this:  why  exactly do we need to hold the board?  Why is it so hard for our guys to type without a CP?  What exactly is the CP providing that allows them to overcome their inherent disability?  Why is message passing hard under testing circumstances?  How can we better make this skill fully independent for our children?  Are there better ways to teach this?  Etc.  We beg scientists to help us because there is nothing more that we all want - parents, friends, professionals, and most of all, the nonspeakers themselves - than to see all of them independent!  

Thus far, we are crying in the wilderness.  What answers has science given us?  In my 30 years in autism (Alex was diagnosed at 1:00 pm on March 22, 1996…but who’s counting), what solutions have we been given?  

That’d be a big, fat NOTHING.

Anyway, back to my discussion of logic…

When I was 17, my 16 year old cousin - whom I dearly loved and forever miss - passed away.  The day of her funeral, I hid in the bushes outside my aunt and uncle’s house, crying hysterically. My big brother found me and sat down to talk.  “There is no god!” I said, grief stricken.  “Well, Judy,” he said thinking for a moment, “People a lot smarter than you believe in god, so maybe you should maintain an open mind.” 

Every time I find myself becoming definitive, I take myself down a peg or two, reminding myself that there is a possibility - even if it’s very small - that I may be wrong…especially if someone really intelligent disagrees with me. I looked into typing/spelling finally because my very, VERY brilliant friend, Ginnie, told me it was real.  I didn’t believe a blessed word but…hey…there was a chance I was wrong.  

And of course, it turned out I wasn’t just wrong.  I was WRONG. 

And you know what?  I survived.  My head didn’t explode or anything!  I lived to tell the tale of my wrongness. 

Oh, wait!  I got it!  I debunked my own belief that spelling was nonsense!  
]]>Sun, 03 May 2026 17:19:28 GMThttps://www.mouthtohandlearning.com/living-mouth-to-hand-judys-blog/open-letter-to-the-editors-of-the-new-york-timesBy now, most of you are probably aware of the OpEd piece that appeared this past week in the New York Times, which reiterated the same-old-same-old, tired arguments against all methods of typing/spelling for communication.  What strikes me every time I read these sorts of things is the complete lack of rational thought they reflect.  Below is a letter I wrote in response, which I sent to the editors of the Times, but which won't of course be printed. 

One more point I could have added is this:  because of several (maybe 4 or 5) instances of false reporting which occurred about 40 years ago, our opponents claim typing to communicate is "dangerous."  Following that logic: 

1.  How many instances of false claims were there per capita in the speaking population over the same period of time?  No one ever lets us know those statistics. (False reporting of abuse is, in fact, just as likely in those who speak, because unfortunately, people lie to promote their own ends.  One of our students lives in a group home where a speaker called OPWDD once or twice a week reporting false abuses because she felt like it.)

2.  Dangerous?  Really?  Is it less dangerous for our nonspeakers to have no method of communication?  I venture to say that our children who have been abused (listen to just one example: Anthony Piccolino's story which was aired on the podcast, Amplifying Nonspeaking Voices, which is now also on his blog) would disagree with that assessment.  There are safeguards in place to verify allegations of abuse.  But there are no safeguards in place to protect those who cannot speak to report abuse. 

So back to my letter: 

Dear Sir or Madam:
I am a New York State licensed special educator and a mother of a 32 year old nonspeaker who types to communicate. As both a professional who works in the field, and as a parent, I found Dr. Amy Lutz' recent OpEd extraordinarily logically faulted. 

I understand healthy skepticism. I had my own grave doubts about typing for communication. I had unsuccessfully tried for 25 years to teach my own son the alphabet - or so I thought. To say I was skeptical when I started this process is an understatement: it's more accurate to say that I quite literally could not imagine a reality in which my son had language and was not profoundly cognitively impaired. What drove me to give it a shot is that it certainly could not hurt to try - if nothing else, we would be practicing letter recognition. There are no words to describe the shock when my own son showed me that I was 100% wrong: every notion I had about who he is, who nonspeakers are, was polar opposite to the reality.

I opened the Mouth to Hand Learning Center here in Westchester, NY, where I have now taught hundreds of nonspeakers to spell/type for communication. In my now 30 years in autism, it is the only teaching method that actually produces results - not just in terms of communication. So many of the "behaviors" (aggression, self-injury, destruction of property, etc.) that lead people to dismiss our children as cognitively impaired, vanish. 

There are several questions I think those who unilaterally dismiss these methods need to consider: 

1. Is it possible that a profoundly cognitively impaired individual, who does not have language, can read cues that are so subtle that no one can actually see (including Dr. Lutz) so that they can write 2000-word essays in front of proctors, as my son did to pass his high school equivalency exam?  Bear in mind that there are 33 characters on an ordinary letterboard and 80-100 keys on a keyboard. This means that every time a student hits a letter correctly on a letterboard, she had a 1 in 33 chance of doing so.  Calculate then the odds of typing 10,000 letters correctly...with cues so subtle that no one has actually ever been able to establish what those cues are.  

2. Is it possible that every professor, at institutions ranging from Rollins College to Cal Berkeley to UCLA to Columbia University to Harvard, etc. from which nonspeakers have graduated are all so unbelievably stupid and gullible that they were bamboozled by their nonspeaking students?  Apparently, only Amy Lutz is intelligent enough to KNOW that this is all a con job.

3. Are the thousands of parents who are of normal to superior intellect, many with advanced degrees from illustrious institutions, all delusional? We are talking mass psychosis on a global scale at this point.

4.  Why are the studies that support the veracity of spelling dismissed? It's not that she included them in her piece. And more than that: all science starts with an observation and that leads to the formation of a hypothesis.  Let us then look at Amy Lutz' hypothesis:  thousands and thousands of nonspeakers around the world, all of whom are profoundly cognitively impaired with no language, are managing to spell/type coherent English utilizing a system of prompts that are impossible to actually see, but which must be there because these individuals are cognitively impaired and have no language.  

Then let's consider an alternative hypothesis to explain the facts: thousands and thousands of nonspeakers around the world are spelling/typing in coherent English because they are not, in fact, cognitively impaired and have language, and are instead, severely motor challenged (which aligns with the literature on autism, which acknowledges that almost 90% of those with autism have a motor impairment) which inhibits their ability to communicate.  

The fact is that what we know about what we now call "autism" is a minute fraction of what we need to know. To summarily dismiss the experience of thousands and thousands of people, many of whom are professionals in the field, is not science.  In fact, it is not actually rational.
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Sincerely,
Judy Chinitz

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