Autism in Cuba – Autism Spectrum Information

Floor Guidelines: Context

“Context,” the phrase, is just not vulnerable to vanishing simply but, however “context,” the idea, may quickly go the best way of “crucial pondering,” or “racism,” whereby events that seemingly know little about these phrases have the facility, via the act of inconsiderate appropriation, to destroy their impression. Extra merely put, this tactic can have a profitable, “Oh yeah? You too!” impact that ends debates in an undeserved stalemate. And as increasingly People report counting on Fb and X for his or her information, the knowledgeable and researched ideas of the previous could not disappear, however their perceived worth already has.

No, I’m truly not speaking about communist vs. capitalist ideologies, “Yankee satan” vs. Marielito rhetoric (though that does require some later consideration)… I’m actually referring to the thought of how we have a look at autism in different international locations—Any different international locations. For autism is just not a situation that’s recognized via a blood check or an MRI.

Folks like myself and my oldest son are recognized with autism through a set of subjectively interpreted behaviors, and we now have to grasp that these behaviors are construed in another way based mostly on the tradition we discover ourselves in. Due to this fact, autistic variations might be uniquely welcomed or shunned wherever on earth you end up. Possibly a discouraged conduct in the USA is welcomed in Malaysia, and due to this fact the particular person feels regulated, happier, and perhaps reveals much less nervousness in Malaysia—seen tensions that can provide away our autism. Possibly the factors used to diagnose us is completely different, and “Nation X” doesn’t use “DSM-5” OR the ICD system, perhaps “Nation Y” is extra respectful of the variations in gender expectation, permitting ladies and non-binary people to be free to be themselves, and due to this fact present extra of their autism, perhaps “Nation Z” seems to be at significantly-challenged autistics, simply considers them undiagnosable disposables, and…disposes of them? This isn’t simply contrarian semantics. This discouraging information for the lazy totally prevents the kind of medical quick meals that People have turn into hooked on, and it additionally reveals how we use knowledge to lie simply as a lot as we use it to elicit reality.

But trusted entities nonetheless have interaction in “international autism research.” Positive. Report on what international locations are reporting. But when the authors of those research appear to suggest that their knowledge might be mixed to disclose planetary truths? Somebody’s attempting to promote you one thing, or, on an mental stage, put your cash on the doornail.

Due to this fact…autism in Cuba, should be checked out via the lens of Cuba. Cuba’s myriad of non secular beliefs, political historical past, meals, Afro-Caribbean artwork kinds…a universe that an article of this size won’t ever fulfill.

And along with the place this text was researched, there’s one other contextual stage to contemplate: When this text was researched…

It’s been my (however largely Cubans’) misfortune that the 2 occasions I’ve visited Cuba have been, coincidentally, the 2 worst financial occasions suffered by the island-nation because the pre-revolutionary days of Batista. My first journey, in 1992, got here proper after the collapse of the Soviet Union, whose longstanding help of Cuba had made the US’s then-30 (now 63)-year-old financial commerce blockade on Cuba much less damaging. And once I and my translator, Eliana Neuwirth (a Management Improvement Supervisor for Particular Olympics), visited for ten days in January (2025), individuals unanimously referred to the time of our go to as “the worst ever.” Cubans have been experiencing hardships of needed items like medicines, supplies, and gas like by no means earlier than.

Because of that lack of ability to import needed supplies, Cuba suffered three energy plant breakdowns in a two-month span between final October and early December. These triggered energy outages of various lengths; however the first having been carefully adopted by Hurricane Oscar, resulted in an island-wide blackout that lasted for days, not hours. The blackouts have additionally since continued after we left, as not too long ago as mid-February. Months of products shortages have additionally taken a toll on fundamental wants, if not additionally temper. Fellow, white vacationers have been few and much between once we have been there. And whereas not violent, these Cubans asking strangers for cash confirmed a modicum of desperation that was shocking for the area.

However then once more, perhaps it wasn’t unhealthy luck for us, as overly-privileged observers trying to write about autism in Cuba? As a result of typically when issues are going your approach, you actually don’t know who you might be, proper? Properly, we bought to see Cuba arguably at its highest want for innovation and creativity.

Autism in Cuba on the High

Cuba has autism too. A number of it. However have they got an analogous prevalence fee because the US, or different richer international locations? Really, the guesswork says no. However none of that is as but confirmed. The sources wanted for prevalence research have simply not been accessible, once more, as a result of blockade.

Traditionally, although, there actually wasn’t a terrific, seen want for the Cubans (specifically, their overseeing entity, the Ministry of Well being) to implement massive sources into autism programming; till 2010-2012, after they began listening to reviews of bigger numbers from their faculties and pediatric workplaces (the primary group of kids they began working with is now 16).

Working out of Havana’s Borras Marfán hospital, Dr. Yoysy Rondon Acosta is the Nationwide Coordinator for Autism and different Neurodevelopmental Problems. Working alongside Dr. Tania Adriana Péon, who heads the Nationwide Group of Youngster Psychiatry. they’ve been charged with arising with nationwide plans that may face up to the challenges of each the prevalence rise and the embargo/blockade. Each municipality within the nation has its personal well being heart that operates underneath the Ministry’s pointers. And the outcome has been a framework that’s greater than somewhat completely different…

For starters, they don’t categorize a “massive three” of medical, psychological, and neurological affect the best way we frequently do to.

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

Going additional, she defined that they don’t obscure medical involvement of their pondering, however not like our medical mannequin of incapacity, “(their) pondering of ‘medical’ is far more of a mixture of conventional and pure medicines.”

Going extra additional, their method is deliberately multi-disciplinary. Psychiatrists don’t simply attain out to Occupational Therapists on an as-need foundation. They’re all tied collectively on the hip as a day-to-day apply. Acosta defined: “We have now seven disciplines that we make work collectively. Youngster Psychiatry, Psychology, Neurology, Genetics, Speech Remedy, Physiatry (a mix of Bodily and Occupational Remedy), and the pure and conventional medication.”

Are extra knowledgeable group selections the primary profit? No. That’s an element, sure, however, “What we actually profit from is a dramatically-reduced time it takes to request and obtain all providers.”

Additionally they determined to attempt to search for autism at age 1.5 (to three) years outdated as a way to counter a number of the embargo’s challenges, discovering that the sooner consideration actually wasn’t that extra a pressure on their workloads, and that had indeniable early intervention advantages. Equally, they began kids’s teams at age 5. As know-how is at present tough to acquire, they mix analysis and providers. They mix language and conduct…

A Father or mother Schooling module is at present being developed. And as to its content material, i.e. what methods are they endorsing, Dr. Péon replied that they might choose and select what they like from every choice as “We are able to’t implement concepts like Floortime, TEACCH, and PECS (image recognition) due to an absence of sources and coaching. We additionally like SCERTS due to the mother or father involvement, however we will’t afford the coaching for that both. Uniquely Human (by SCERTS writer, Barry Prizant) is each of our favourite ebook, although.” They smiled, realizing—full disclosure—that Barry and I are shut. Excitedly, Dr. Acosta jumped in, “And we love LegoTherapy too!”

The traditionally trauma-inducing however nonetheless widely-used, Utilized Behavioral Evaluation (ABA) solely got here up a few times within the morning dialogue. Acosta and Péon are usually not anti-ABA by precept, and use the non-discreet trials elements of ABA in additional emergency conditions.

Lastly, there are 9 autism faculties in Cuba, 4 of that are in, or near Havana. Kids are assigned to those faculties via their municipalities.

They usually all report that the best supply of ache and struggling as a result of embargo in these faculties, is the huge unavailability of medicines (particularly these prescribed for ADHD and epilepsy).

Evaluation

Borras-Marfán hospital can be a central diagnostic heart for the most important Havana municipality. We have been allowed to sit down in on the evaluation of a physically-healthy 2.5-year outdated boy who had come from a close-by neighborhood along with his grandmother. Representatives from all seven disciplines have been current.

Because the door opened, the boy zoomed into the room as soon as he noticed the toys. The workforce’s OT skilled, Elizabeth L Morell Martinez, instantly engaged him whereas the opposite grownups talked.

The grandmother reported the dearth of speech as essentially the most regarding subject to her. For others, drawing extra curiosity was the kid’s clear lack of recognition of the opposite individuals within the room. He was additionally sorting toys by form and colour moderately than participating in “imaginative play.” At first look he appeared an apparent analysis, although he was trusting, not anxious, and his fantastic motor expertise have been perhaps even superior.

However the workforce started asking questions on house life. There was a brand new child brother who will get seemingly a lot of the consideration. Dad has left. Mother lets grandma do maybe way more of the mothering share, despite the fact that grandma doesn’t stay with them (however she picks the boy up each day to take him to her home for a couple of hours). Grandma reported that when he eats at his house that the boy is commonly positioned in entrance of the TV or a pc. That perked the workforce’s ears up.

One workforce member advised Neuwirth, that “That is necessary as a result of in Cuba we don’t encourage kids to see screens till they’re 4 years outdated.”

Due to this and the questions on house life, the workforce wouldn’t diagnose him but. They might see the probability of an autism analysis down the highway, however for now the workforce assigned a second assembly, and this time it was mandated that the mom attend with the kid.

College Go to

The faculties, not like the Ministry, aren’t a lot having to design across the blockade, however they’re undoubtedly having to innovatively implement across the blockade.

The Dora Alonso Particular College in Havana, named after a twentieth century kids’s ebook writer and radio character, serves 168 elementary college college students aged 2-6 years outdated. As such it’s the largest of the 9 autism faculties within the nation. It additionally counts one other 48 college students which are attending an built-in college (all of which tells you their lesser prevalence numbers in a rustic of 9 million individuals).

Class sizes are 6-8 college students per, every taught by one, graduate-level, Particular Schooling instructor, and one—what we’d name a—paraprofessional aide. They use animal (and marine animal) remedy, a PECS variation, and lanyards typically adorn college students with photos informing them of what their subsequent class or exercise might be. They’ve a college nurse (which Neuwirth reported was uncommon for the area), use signal language in addition to speech remedy; and due to college provide shortages they’ve gotten very adept at utilizing coloured paper to substitute for different conventional provides. They generally, for varied causes, could even assign a colour to a pupil for a time frame. And lastly, they emphasize utilizing music for the needs of speech remedy greater than most, and discover it typically causes the primary phrases in lots of kids.

Keep in mind that due to the embargo, they haven’t any entry to smartboards. Nothing shut, actually. A lower than minute-long energy outage even occurred throughout our go to.

One ingredient the place the college may use enchancment nonetheless, is the constructing. It’s too small, and the comparatively claustrophobic sensory environment it offers (as noises from school rooms move out and in of one another) might be seen to impression college students’ regulation. However once I later requested a senior official about this, they nodded. The diagnostic numbers are usually not at our ranges however by Cuba’s requirements the rise has been noticeable, and it impacts the spatial deficits. Extra importantly, building supplies are one other casualty of the embargo.

From this sensory dilemma, nonetheless, a visual stoicism is seen within the academics.

A method that I’ve at all times assessed Okay-12 academics (actually, to verify they have been pleased) is checking on whether or not or not they have been regulated throughout difficult conditions (as Prizant tells us “a dysregulated grownup can by no means regulate a dysregulated youngster”). When circumstances require them to, the academics at Dora Alonso College consolation with out displaying any indicators of exasperation. They don’t fear a couple of timetable to get the kid to cease crying. You simply see their unhappiness that the kid is upset, and their willingness to consolation for so long as it takes.

Whereas photos of the youngsters understandably weren’t allowed, we toured the constructing and bought to see firsthand the place the college is probably its most outstanding (imagine it or not)…this lies within the existence of, and their therapy of their autistic workers. For the area, it’s exemplary.

“Michel is sensible on our computer systems. He by no means makes a mistake,” says Head of College, Laude Cruz Mejo. Just like the American autistic, Jerry Newport, Michel do Campo loves asking people what day they have been born, after which he instantly tells them what day of the week it was. Of higher significance, although, is that Michel is tremendously valued for his job efficiency.

One other autistic worker is the College Gardener, Julio Marchan. Marchan, who, in keeping with Mejo, should do sure duties his approach (even when his technique of sweeping seems to be back-breaking). He won’t be deterred and they also have revered his needs.

When Marchan took a break and came visiting to say hello. I used to be launched to him by Mejo with the phrases, “Michael John has autism too!” And as if it was apparent to him, Marchan replied, “I do know.”

Politics (“If I haaaaave to…”)

Many people are sufficiently old to recollect an period wherein sure elements of on a regular basis life have been off-limits to politics. Schooling and well being care, particularly, have been reassuringly secure territory as a result of each catered to Republicans and Democrats alike. Our “secure house,” again then, was {that a} truth was a truth.

Even my outdated group, GRASP,* had equal components Republicans and Democrats sharing wine collectively in any respect our advantages as not too long ago as once I left in 2013. Each political events, you see, additionally had equal numbers of autistic youngsters.

* The World and Regional Asperger Syndrome Partnership; on the time, the most important membership group on this planet for adults on the autism spectrum.

Who gained the American political combat for management over our training system actually simply is dependent upon the area the place you reside (though rural vs. city is commonly a dependable indicator), however neither aspect gained well being care. The victor there was enterprise capital, the insurance coverage trade, or Wall Avenue. And in each circumstances, the loser was the American public.

However the distinction is that whereas well being care was necessary territory for its financial chance, training was desired given its potential for cultural affect. Our Superintendents was once profession educators. College Boards used to have educated individuals elected to them.

Properly, sarcastically, within the Nineties once I was a minor-league diplomat, we (maybe smugly) used to consult with this small, neighboring, island nation of Cuba as a microcosm of the American public training system. In any case, each Cuba and public training (whilst an idea) have been trashed by American critics in ways in which simply appeared above and past purpose—or a prelude of 2020s rhetoric—provided that each Cuba and American public training, as a consequence of monetary restrictions, had by no means been given the possibility to succeed.

American public training has certainly, and continues to be defunded and devalued. And our historic embargo on Cuba has prevented “Fidel on up” from truly having the ability to govern within the method wherein they need—no matter that really is.

For many years, People have been polled in regards to the embargo, they usually have by no means expressed help for it, regardless of who was within the White Home. The blockade is something however the will of the American individuals, and I hoped I may present Cubans some tiny consolation by often reminding them of that. The UN has known as for the embargo’s elimination 31 occasions, most not too long ago in 2023, when 187 nations voted to have it eliminated vs. 2 nations—the US and Israel; however the latter two having veto energy ensured the blockade would stay.

To nearly all of Americans (together with Republicans), the blockade is seen merely as punishment enacted on innocents. But it surely has remained in place in all probability to appease that group of conservative Cubans in Miami; a strong group that retains extra average Cubans in Miami (they exist!) from feeling comfy expressing their opinions; and it additionally retains Florida voting Republican.

And just like the Chinese language proverb about payback (“He who seeks revenge digs two graves”), the embargo additionally inflicts blackened hearts on those that derive pleasure from such destruction on an harmless, civilian inhabitants.

Let’s say, for the sake of argument, that almost all of People are improper, and that the remainder of the world is improper, and that Republican leaders who converse on Cuba are right about Cuba’s leaders. That Cuba is run by terrorists who sadistically couldn’t care much less in regards to the welfare and struggling of their very own individuals…It is a foolish train, however bear with me for a minute…Let’s faux the worst, that the leaders of Cuba don’t care if their individuals stay or die…

Properly, does that give the USA the precise to kill them?

Two Disclaimers

1. You might argue this text is erroneously titled, and will as an alternative be known as “Autism in Havana,” as Eliana and I—due solely to logistical problems—weren’t capable of discover the autism world outdoors the nation’s capital. We additionally didn’t get the time that we’d have wished with the fledgling, but rising mother or father group. An grownup self-advocate group seemingly doesn’t but exist, however it’ll as Cuba’s autistic tradition develops.
2. The writing of this text was an concept that happened after I had been invited to talk in Havana (which thusly happened after I visited the Cuban Mission to the UN merely within the hopes of simply gaining a visa to go to a selected surf spot).

On our final day, and with huge help from Eliana, I had the honour of addressing Cuba’s medical, psychological instructional, and mother or father group leaders as their first-ever western autism speaker. Questioning what to share, I made a decision on sticking with what I knew: How with “fridge mom” theories, genetic autism analysis, vaccine idea, ABA, TikTok diagnoses…that we within the US had been something however a mannequin for any smaller, rising nation’s autism initiatives to need to emulate. I can get detrimental once I converse, however I’ve by no means been so persistently detrimental (I chuckle as I write) in a presentation as I used to be that day. It felt nice! 🙂 As for areas they may look as much as us, I cited our sturdy and well-populated self-advocate group, our instructional leaders, and the books we’ve produced.

Transferring Ahead

After nonetheless extra struggling, Cuba will in all probability survive this terrible time. Nothing lasts eternally, however whether or not one likes them or not, they’ve been down this highway earlier than. And their expertise at improvisation is by now indeniable, a present seemingly as a consequence of an historic consideration to training.

Possibly there’s toughness or resilience in there as nicely, however we now have to do not forget that (talking of well being care) Cuba’s medical system has been a mannequin for economies of its measurement for half a century. European college students, even American ones, apply in droves to attend Cuban medical faculties. And the rhetoric that American political leaders wish to spew about our supposed enemies is commonly, at greatest, unreliable. Any American, as an example, who has travelled extensively, however particularly to international locations that the US likes to talk negatively of?…they at all times come away shocked, saying the identical factor, “I couldn’t imagine it. They know ten occasions extra about us than we learn about them!”

So again to autism…and what “shifting ahead” may imply for Cuba.

Some readers is perhaps questioning what our diagnostic numbers would seem like if we discouraged screens earlier than age 4, or if we had seven interdisciplinary professionals at every (free) evaluation. Multi-disciplinary medication is on no account unparalleled within the US; however not often does such a apply evolve outdoors the disciplines of strictly medication (i.e. not psychology…and so on.) and once we do it, we’d have seven separate appointments, and never Cuba’s seven professionals current at one diagnostic evaluation.

However different readers could have observed that one of many seven disciplines integrated into Dr. Acosta and Dr. Péon’s plan, was “genetics.” Naturally, that was the one which I internally questioned.

Regardless of their distinctive circumstances and concepts, Cuba nonetheless has a number of the identical cultural battles mendacity forward of them as what we went via. The numbers of these (nearly completely geneticists) who want to present a capability sooner or later to terminate autistic pregnancies appear proportionately a lot smaller in Cuba than within the US. I’m due to this fact not fearful about Cuba repeating our errors, and going via a counter-productive “treatment” interval like we did, or arising with a Cuban model of Autism Speaks or the Autism Science Basis. However there could also be different elements that I’m not conscious of which may contribute to that mysterious future autism tradition. One physician I spoke with was holding again tears after my remarks due to what I’d stated in regards to the worth of an autistic life. She shared that it ran counter to how she was educated. Like many prior-generation, Cuban, younger individuals, she selected to see the world and examine in Moscow. However she selected a selected sort of medication that solely the Soviets provided that actually interprets as “Defectology.” It’s because it sounds.

How marvelous that she may very well be that courageous to hearken to us, however…are there others not so courageous who nonetheless imagine within the worth of such pondering?

Once more, I don’t see the momentum for such horrific improvement, however in all probability within the context of chance vs. likelihood, stated chance shouldn’t be ignored.

Cuba’s head geneticist was the vocal member of the viewers who wasn’t thrilled with my speech. In the course of the Q&A she respectfully protested my critiques of genetic autism analysis, stating that “(they) will discover a treatment,” regardless of my having gone over the historical past of how arcane, ethically flawed, and medically unimaginable “treatment” pondering was (if one thing is genetic, you’re born with it, and you’ll die with it, although life can enhance dramatically relying on the helps you obtain). I used to be stunned, given how a lot dedication Cuban medication has traditionally paid to ethics.

So I identified to her that after $600 million {dollars} in public funding, that American genetic autism researchers hadn’t found one single factor to profit the common working or middle-class household with a toddler with autism. “We nonetheless need our probability,” she stated, defiantly, avoiding my level. So I closed the alternate with one other level; that whereas our genetic analysis leaders have been void of these aforementioned moral limitations, that our medical doctors weren’t dumb. If there’d been one thing there for them to find with all that cash, they’d have discovered it. She was one in all my hosts, and I partially remorse intellectually scolding her considerably. However she was arguing—not a misplaced trigger—however an terrible trigger, of eugenics.

There’s additionally the financial actuality:

• Genetic autism analysis would value Cuba tens of thousands and thousands of {dollars}, and yield nothing however revenue for the researchers.
• Academic analysis prices a lot much less, however actually, the analysis has been carried out. No cash want be spent. A couple of million, nonetheless, needs to be spent on implementing—integrating via coaching—humane instructional methods into the colleges (p.s. we have to do that too within the US).
• Grownup applications for social well-being, housing, and employment down the highway will value tens of thousands and thousands, however will give a monetary return in that it’s going to flip Cuban autistics into productive residents whereas in any other case they may very well be totally depending on authorities care.
• Perspective modifications, and being a great particular person, prices nothing. This creates a tradition of acceptance whereby autistics can thrive.

Lately, after our go to, Cuba additionally tweaked the method via which well being knowledge is collected from household medical doctors’ workplaces inside the municipalities. It could result in dependable prevalence findings.

Lastly, there’s a delicate reality—dare I say it, one benefit— about once we possess little in materials sources, as Cuba does now. It signifies that no disruptive entities need something from you.

Program designs don’t require cash. However their implementation does. If Cuba can design their applications now, from scratch, based mostly on Cuban realities, and nobody else’s, after which cross them into regulation, or coverage, earlier than their economic system comes again? Then they may have created a mannequin to their highest ultimate with out the corruption that happens when unethical entities—like proponents of genetic analysis—greedily scent that there’s a piece of the pie available.

They’re sensible. They’ll determine it out.

Michael John Carley is the Facilitator of the “Connections” program at New York College for his or her worldwide autistic college students, and he additionally has a personal, Peer Mentoring apply. Previously, he was the Founding father of GRASP, a college marketing consultant, and the writer of “Asperger’s From the Inside-Out” (Penguin/Perigee 2008), “Unemployed on the Autism Spectrum,” (Jessica Kingsley Publishers 2016), “The Ebook of Completely happy, Constructive, and Assured Intercourse for Adults on the Autism Spectrum…and Past!,” (Neurodiversity Press 2021, the place he not too long ago turned the Editor-in-Chief), and dozens of revealed articles. His many different present posts embody being the Neurodiversity and Management Advisor for the League College for Autism, and he’s Core College for each Northeastern University’s College of Engineering, and Stony Brook College’s LEND program. For extra info on Michael John or to subscribe to his free publication, you may go to www.michaeljohncarley.com.