Autism in Cuba

(A Cuban special education teacher comforts a student)

Ground Rules: Context

“Context,” the word, is not at risk of vanishing just yet, but “context,” the concept, could soon go the way of  “critical thinking,” or “racism,” wherein parties that seemingly know little about these terms have the power, through the act of thoughtless appropriation, to destroy their impact. More simply put, this tactic can have a successful, “Oh yeah? You too!” effect that ends debates in an undeserved stalemate. And as more and more Americans report relying on Facebook and X for their news, the informed and researched thoughts of the past may not disappear, but their perceived value already has.

No, I’m actually not talking about communist vs. capitalist ideologies, “Yankee devil” vs. Marielito rhetoric (although that does require some later attention)… I’m really referring to the idea of how we look at autism in other countries—Any other countries. For autism is not a condition that is diagnosed through a blood test or an MRI.

People like myself and my oldest son are diagnosed with autism via a set of subjectively interpreted behaviors, and we have to understand that those behaviors are construed differently based on the culture we find ourselves in. Therefore, autistic differences will be uniquely welcomed or shunned wherever on earth you find yourself. Maybe a discouraged behavior in the United States is welcomed in Malaysia, and therefore the person feels regulated, happier, and maybe shows less anxiety in Malaysia—visible tensions that can give away our autism. Maybe the criteria used to diagnose us is different, and “Country X” doesn’t use “DSM-5” OR the ICD system, maybe “Country Y” is more respectful of the differences in gender expectation, allowing women and non-binary folk to be free to be themselves, and therefore show more of their autism, maybe “Country Z” looks at significantly-challenged autistics, just considers them undiagnosable disposables, and…disposes of them? This isn’t just contrarian semantics. This discouraging news for the lazy thoroughly prevents the type of medical fast food that Americans have become addicted to, and it also reveals how we use data to lie just as much as we use it to elicit truth.

Yet trusted entities still engage in “global autism studies.” Sure. Report on what countries are reporting. But if the authors of these studies seem to imply that their data can be combined to reveal planetary truths? Someone’s trying to sell you something, or, on an intellectual level, put your money on the doornail.

Therefore…autism in Cuba, must be looked at through the lens of Cuba. Cuba’s myriad of spiritual beliefs, political history, food, Afro-Caribbean art forms…a universe that an article of this length will never satisfy.

And in addition to where this article was researched, there’s another contextual level to consider: When this article was researched…

It’s been my (but mostly Cubans’) misfortune that the two times I’ve visited Cuba were, coincidentally, the two worst economic times suffered by the island-nation since the pre-revolutionary days of Batista. My first trip, in 1992, came right after the collapse of the Soviet Union, whose longstanding support of Cuba had made the US’s then-30 (now 63)-year-old economic trade blockade on Cuba less damaging. And when I and my translator, Eliana Neuwirth (a Leadership Development Manager for Special Olympics), visited for ten days in January (2025), people unanimously referred to the time of our visit as “the worst ever.” Cubans were experiencing hardships of necessary goods like medicines, materials, and fuel like never before.

Due to that inability to import necessary materials, Cuba suffered three power plant breakdowns in a two-month span between last October and early December. These caused power outages of varying lengths; but the first having been closely followed by Hurricane Oscar, resulted in an island-wide blackout that lasted for days, not hours. The blackouts have also since continued after we left, as recently as mid-February. Months of goods shortages have also taken a toll on basic needs, if not also mood. Fellow, white tourists were few and far between when we were there. And while not violent, those Cubans asking strangers for money showed a modicum of desperation that was surprising for the region.

But then again, maybe it wasn’t bad luck for us, as overly-privileged observers looking to write about autism in Cuba? Because sometimes when things are going your way, you really don’t know who you are, right? Well, we got to see Cuba arguably at its highest need for innovation and creativity.

Autism in Cuba at the Top

Cuba has autism too. Lots of it. But do they have a similar prevalence rate as the US, or other richer countries? Actually, the guesswork says no. But none of this is as yet proven. The resources needed for prevalence studies have just not been available, again, due to the blockade.

Historically, though, there really wasn’t a great, visible need for the Cubans (in particular, their overseeing entity, the Ministry of Health) to implement large resources into autism programming; until 2010-2012, when they started hearing reports of larger numbers from their schools and pediatric offices (the first group of children they started working with is now 16).

Operating out of Havana’s Borras Marfán hospital, Dr. Yoysy Rondon Acosta is the National Coordinator for Autism and other Neurodevelopmental Disorders. Working alongside Dr. Tania Adriana Péon, who heads the National Group of Child Psychiatry. they have been charged with coming up with national plans that can withstand the challenges of both the prevalence rise and the embargo/blockade. Every municipality in the country has its own health center that operates under the Ministry’s guidelines. And the result has been a framework that’s more than a little different…

For starters, they don’t categorize a “big three” of medical, psychological, and neurological influence the way we often do to.

“For us, autism is ‘neurobiological,’” Dr. Acosta stated.

Going further, she explained that they don’t obscure medical involvement in their thinking, but unlike our medical model of disability, “(their) thinking of ‘medical’ is much more of a mix of traditional and natural medicines.”

Going more further, their approach is intentionally multi-disciplinary. Psychiatrists don’t just reach out to Occupational Therapists on an as-need basis. They are all tied together at the hip as a day-to-day practice. Acosta explained: “We have seven disciplines that we make work together. Child Psychiatry, Psychology, Neurology, Genetics, Speech Therapy, Physiatry (a combination of Physical and Occupational Therapy), and the natural and traditional medicine.“

Are more informed group decisions the main benefit? No. That’s a factor, yes, but, “What we really benefit from is a dramatically-reduced time it takes to request and receive all services.“

They also decided to try and look for autism at age 1.5 (to 3) years old as a means to counter some of the embargo’s challenges, discovering that the earlier attention really wasn’t that additional a strain on their workloads, and that had indisputable early intervention benefits. Similarly, they started children’s groups at age 5. As technology is currently difficult to obtain, they combine research and services. They combine language and behavior…

A Parent Education module is currently being developed. And as to its content, i.e. what strategies are they endorsing, Dr. Péon replied that they would pick and choose what they like from each option as “We can’t implement ideas like Floortime,  TEACCH, and PECS (picture recognition) because of a lack of resources and training. We also like SCERTS because of the parent involvement, but we can’t afford the training for that either. Uniquely Human (by SCERTS author, Barry Prizant) is both of our favorite book, though.” They smiled, knowing—full disclosure—that Barry and I are close. Excitedly, Dr. Acosta jumped in, “And we love LegoTherapy too!“

The historically trauma-inducing but still widely-used, Applied Behavioral Analysis (ABA) only came up once or twice in the morning discussion. Acosta and Péon are not anti-ABA by principle, and use the non-discreet trials aspects of ABA in more emergency situations.

Finally, there are 9 autism schools in Cuba, 4 of which are in, or close to Havana. Children are assigned to these schools through their municipalities.

And they all report that the greatest source of pain and suffering due to the embargo in these schools, is the vast unavailability of medications (especially those prescribed for ADHD and epilepsy).

Assessment

Borras-Marfán hospital is also a central diagnostic center for the largest Havana municipality. We were allowed to sit in on the assessment of a physically-healthy 2.5-year old boy who had come from a nearby neighborhood with his grandmother. Representatives from all seven disciplines were present.

As the door opened, the boy zoomed into the room once he spotted the toys. The team’s OT professional, Elizabeth L Morell Martinez, immediately engaged him while the other grownups talked.

The grandmother reported the lack of speech as the most concerning issue to her. For others, drawing more interest was the child’s clear lack of recognition of the other people in the room. He was also sorting toys by shape and color rather than engaging in “imaginative play.” At first glance he seemed an obvious diagnosis, though he was trusting, not anxious, and his fine motor skills were maybe even advanced.

But the team began asking questions about home life. There was a new baby brother who gets seemingly most of the attention. Dad has left. Mom lets grandma do perhaps far more of the mothering share, even though grandma does not live with them (but she picks the boy up every day to take him to her house for a few hours). Grandma reported that when he eats at his home that the boy is often placed in front of the TV or a computer. That perked the team’s ears up.

One team member told Neuwirth, that “This is important because in Cuba we don’t encourage children to see screens until they’re 4 years old.“

Because of this and the questions about home life, the team would not diagnose him yet. They could see the likelihood of an autism diagnosis down the road, but for now the team assigned a second meeting, and this time it was mandated that the mother attend with the child.

School Visit

The schools, unlike the Ministry, aren’t so much having to design around the blockade, but they are definitely having to innovatively implement around the blockade.

The Dora Alonso Special School in Havana, named after a 20th century children’s book author and radio personality, serves 168 elementary school students aged 2-6 years old. As such it is the largest of the 9 autism schools in the country. It also counts another 48 students that are attending an integrated school (all of which tells you their lesser prevalence numbers in a country of 9 million people).

Class sizes are 6-8 students per, each taught by one, graduate-level, Special Education teacher, and one—what we would call a—paraprofessional aide. They use animal (and marine animal) therapy, a PECS variation, and lanyards often adorn students with pictures informing them of what their next class or activity will be. They have a school nurse (which Neuwirth reported was rare for the region), use sign language as well as speech therapy; and because of school supply shortages they have gotten very adept at using colored paper to substitute for other traditional supplies. They sometimes, for various reasons, may even assign a color to a student for a period of time. And lastly, they emphasize using music for the purposes of speech therapy more than most, and find it often causes the first words in many children.

Remember that because of the embargo, they have no access to smartboards. Nothing close, really. A less than minute-long power outage even occurred during our visit.

One element where the school could use improvement however, is the building. It’s too small, and the relatively claustrophobic sensory atmosphere it provides (as noises from classrooms flow in and out of each other) can be seen to impact students’ regulation. But when I later asked a senior official about this, they nodded. The diagnostic numbers are not at our levels but by Cuba’s standards the rise has been noticeable, and it impacts the spatial deficits. More importantly, construction materials are another casualty of the embargo.

From this sensory dilemma, however, a visible stoicism is seen in the teachers.

One way that I’ve always assessed K-12 teachers (really, to make sure they were happy) is checking on whether or not they were regulated during challenging situations (as Prizant tells us “a dysregulated adult can never regulate a dysregulated child”). When circumstances require them to, the teachers at Dora Alonso School comfort without showing any signs of exasperation. They don’t worry about a timetable to get the child to stop crying. You just see their sadness that the child is upset, and their willingness to comfort for as long as it takes.

While pictures of the children understandably were not allowed, we toured the building and got to see firsthand where the school is perhaps its most remarkable (believe it or not)…this lies in the existence of, and their treatment of their autistic employees. For the region, it’s exemplary.

“Michel is brilliant on our computers. He never makes a mistake,” says Head of School, Laude Cruz Mejo. Like the American autistic, Jerry Newport, Michel do Campo loves asking folks what day they were born, and then he immediately tells them what day of the week it was. Of greater importance, though, is that Michel is greatly valued for his job performance.

Another autistic employee is the School Gardener, Julio Marchan. Marchan, who, according to Mejo, must do certain tasks his way (even if his method of sweeping looks back-breaking). He will not be deterred and so they have respected his wishes.

When Marchan took a break and came over to say hi. I was introduced to him by Mejo with the words, “Michael John has autism too!” And as if it was obvious to him, Marchan replied, “I know.”

Politics (“If I haaaaave to…”)

Many of us are old enough to remember an era in which certain aspects of everyday life were off-limits to politics. Education and health care, especially, were reassuringly safe territory because both catered to Republicans and Democrats alike. Our “safe space,” back then, was that a fact was a fact.

Even my old organization, GRASP,* had equal parts Republicans and Democrats sharing wine together at all our benefits as recently as when I left in 2013. Both political parties, you see, also had equal numbers of autistic kids.

* The Global and Regional Asperger Syndrome Partnership; at the time, the largest membership organization in the world for adults on the autism spectrum.

Who won the American political fight for control over our education system really just depends on the region where you live (although rural vs. urban is often a reliable indicator), but neither side won health care. The victor there was venture capital, the insurance industry, or Wall Street. And in both cases, the loser was the American public.

But the difference is that while health care was important territory for its economic possibility, education was desired given its potential for cultural influence. Our Superintendents used to be career educators. School Boards used to have educated people elected to them.

Well, ironically, in the 1990s when I was a minor-league diplomat, we (perhaps smugly) used to refer to this small, neighboring, island nation of Cuba as a microcosm of the American public education system. After all, both Cuba and public education (even as a concept) were trashed by American critics in ways that just seemed above and beyond reason—or a prelude of 2020s rhetoric—given that both Cuba and American public education, due to financial restrictions, had never been given the chance to succeed.

American public education has indeed, and continues to be defunded and devalued. And our historical embargo on Cuba has prevented “Fidel on up” from actually being able to govern in the manner in which they wish—whatever that actually is.

For decades, Americans have been polled about the embargo, and they have never expressed support for it, no matter who was in the White House. The blockade is anything but the will of the American people, and I hoped I could provide Cubans some tiny comfort by occasionally reminding them of that. The UN has called for the embargo’s removal 31 times, most recently in 2023, when 187 nations voted to have it removed vs. 2 nations—the US and Israel; but the latter two having veto power ensured the blockade would remain.

To the majority of American citizens (including Republicans), the blockade is seen merely as punishment enacted on innocents. But it has remained in place probably to appease that community of conservative Cubans in Miami; a powerful group that keeps more moderate Cubans in Miami (they exist!) from feeling comfortable expressing their opinions; and it also keeps Florida voting Republican.

And like the Chinese proverb about payback (“He who seeks revenge digs two graves”), the embargo also inflicts blackened hearts on those who derive joy from such destruction on an innocent, civilian population.

Let’s say, for the sake of argument, that the majority of Americans are wrong, and that the rest of the world is wrong, and that Republican leaders who speak on Cuba are correct about Cuba’s leaders. That Cuba is run by terrorists who sadistically couldn’t care less about the welfare and suffering of their own people…This is a silly exercise, but bear with me for a minute…Let’s pretend the worst, that the leaders of Cuba don’t care if their people live or die…

Well, does that give the United States the right to kill them?

Two Disclaimers

1. You could argue this article is erroneously titled, and should instead be called “Autism in Havana,” as Eliana and I—due only to logistical complications—were not able to explore the autism world outside the country’s capital. We also did not get the time that we would have wished with the fledgling, yet growing parent community. An adult self-advocate community seemingly does not yet exist, but it will as Cuba’s autistic culture develops.

2. The writing of this article was an idea that came about after I had been invited to speak in Havana (which thusly came about after I visited the Cuban Mission to the UN merely in the hopes of just gaining a visa to go to a particular surf spot).

On our last day, and with massive assistance from Eliana, I had the honor of addressing Cuba’s medical, psychological educational, and parent community leaders as their first-ever western autism speaker. Wondering what to share, I decided on sticking with what I knew: How with “refrigerator mother” theories, genetic autism research, vaccine theory, ABA, TikTok diagnoses…that we in the US had been anything but a model for any smaller, emerging country’s autism initiatives to want to emulate. I can get negative when I speak, but I’ve never been so consistently negative (I laugh as I write) in a presentation as I was that day. It felt great! 🙂 As for areas they could look up to us, I cited our robust and well-populated self-advocate community, our educational leaders, and the books we’ve produced.

Moving Forward

After however more suffering, Cuba will probably survive this awful time. Nothing lasts forever, but whether one likes them or not, they’ve been down this road before. And their talent at improvisation is by now indisputable, a gift likely due to an historical attention to education.

Maybe there’s toughness or resilience in there as well, but we have to remember that (speaking of health care) Cuba’s medical system has been a model for economies of its size for half a century. European students, even American ones, apply in droves to attend Cuban medical schools. And the rhetoric that American political leaders like to spew about our supposed enemies is often, at best, unreliable. Any American, for instance, who has travelled extensively, but especially to countries that the US likes to speak negatively of?…they always come away shocked, saying the same thing, “I couldn’t believe it. They know ten times more about us than we know about them!“

So back to autism…and what “moving forward” might mean for Cuba.

Some readers might be wondering what our diagnostic numbers would look like if we discouraged screens before age 4, or if we had seven interdisciplinary professionals at each (free) assessment. Multi-disciplinary medicine is by no means unheard of in the US; but rarely does such a practice evolve outside the disciplines of strictly medicine (i.e. not psychology…etc.) and when we do it, we’d have seven separate appointments, and not Cuba’s seven professionals present at one diagnostic assessment.

But other readers may have noticed that one of the seven disciplines incorporated into Dr. Acosta and Dr. Péon’s plan, was “genetics.” Naturally, that was the one that I internally questioned.

Despite their unique circumstances and ideas, Cuba still has some of the same cultural battles lying ahead of them as what we went through. The numbers of those (almost exclusively geneticists) who would like to provide an ability in the future to terminate autistic pregnancies seem proportionately much smaller in Cuba than in the US. I’m therefore not worried about Cuba repeating our mistakes, and going through a counter-productive “cure” period like we did, or coming up with a Cuban version of Autism Speaks or the Autism Science Foundation. But there may be other factors that I’m not aware of that might contribute to that mysterious future autism culture. One doctor I spoke with was holding back tears after my remarks because of what I’d said about the value of an autistic life. She shared that it ran counter to how she was trained. Like many prior-generation, Cuban, young people, she chose to see the world and study in Moscow. But she chose a particular type of medicine that only the Soviets offered that literally translates as “Defectology.” It is as it sounds.

How marvelous that she could be that brave to listen to us, but…are there others not so brave who still believe in the value of such thinking?

Again, I don’t see the momentum for such horrific development, but probably in the context of possibility vs. probability, said possibility shouldn’t be ignored.

Cuba’s head geneticist was the vocal member of the audience who wasn’t thrilled with my speech. During the Q&A she respectfully protested my critiques of genetic autism research, stating that “(they) will find a cure,” despite my having gone over the history of how arcane, ethically flawed, and medically impossible “cure” thinking was (if something is genetic, you’re born with it, and you will die with it, though life can improve dramatically depending on the supports you receive). I was surprised, given how much dedication Cuban medicine has historically paid to ethics.

So I pointed out to her that after $600 million dollars in public funding, that American genetic autism researchers hadn’t discovered one single thing to benefit the average working or middle-class family with a child with autism. “We still want our chance,” she said, defiantly, avoiding my point. So I closed the exchange with another point; that while our genetic research leaders were void of those aforementioned ethical barriers, that our doctors weren’t dumb. If there’d been something there for them to discover with all that money, they’d have found it. She was one of my hosts, and I partially regret intellectually scolding her somewhat. But she was arguing—not a lost cause—but an awful cause, of eugenics.

There is also the economic reality:

• Genetic autism research would cost Cuba tens of millions of dollars, and yield nothing but income for the researchers.
• Educational research costs much less, but honestly, the research has been done. No money need be spent. A few million, however, should be spent on implementing—integrating through training—humane educational strategies into the schools (p.s. we need to do this too in the US).
• Adult programs for social well-being, housing, and employment down the road will cost tens of millions, but will give a financial return in that it will turn Cuban autistics into productive citizens whereas otherwise they could be entirely dependent on government care.
• Attitude changes, and being a good person, costs nothing. This creates a culture of acceptance wherein autistics can thrive.

Recently, after our visit, Cuba also tweaked the process through which health data is collected from family doctors’ offices within the municipalities. It may lead to reliable prevalence findings.

Finally, there is a delicate truth—dare I say it, one advantage— about when we possess little in material resources, as Cuba does now. It means that no disruptive entities want anything from you.

Program designs don’t require money. But their implementation does. If Cuba can design their programs now, from scratch, based on Cuban realities, and no one else’s, and then pass them into law, or policy, before their economy comes back? Then they will have created a model to their highest ideal without the corruption that occurs when unethical entities—like proponents of genetic research—greedily smell that there is a piece of the pie to be had.

They’re smart. They’ll figure it out.