l niño se quedó dormido y se despertó cuando el autobús de la ruta escolar estaba en las cocheras donde le abrieron la puerta y le dejaron ir en Leganés: hallado seis horas después deambulando a 10 kilómetros del colegio.
Leo, un niño autista de 11 años, fue olvidado en el autobús de la ruta escolar de Leganés (Madrid) tras quedarse dormido en la parte trasera del vehículo.
Cuando se despertó estaba encerrado en el autobús en las cocheras de Alcorcón. Empezó a tocar el claxon y una persona abrió el vehículo.
El menor salió andando y empezó a deambular. Seis horas después fue encontrado por la Policía de Alcorcón a 10 kilómetros de su centro escolar. Ocurrió el pasado lunes 11 de septiembre. Los padres de Leo han denunciado los hechos en comisaría por delitos de abandono del menor, negligencia y un posible delito de lesiones.
La Comunidad de Madrid ha abierto un expediente al Centro de Educación Especial Alfonso X el Sabio de Leganés (Madrid) y a la empresa de transporte Puesta del Sol que realiza la ruta “para depurar responsabilidades” . Así lo indicaron fuentes de la Consejería de Educación, Ciencia y Universidades, que confirmaron que “esta misma mañana” ha enviado a la inspección educativa al centro educativo para recabar información sobre el caso.
Alrededor de las 9.30 horas, como cada mañana, el pequeño se despidió de su madre, se subió al autobús que le lleva a su colegio, el Centro de Educación Especial Alfonso X el Sabio, en la ciudad madrileña de Leganés.
Su viaje debería haber durado cerca de 10 minutos, que es lo que se tarda en coche desde su casa hasta el centro donde estudia. Pero el trayecto del menor duró mucho más. Se quedó dormido sentado en el último asiento del autobús y nadie lo despertó cuando llegó a su destino.
Ni la conductora del vehículo ni la monitora que está al cargo de él -y de los otros cuatro niños que viajan en esa ruta escolar- revisaron que todos los niños bajaran del autobús. El colegio tampoco se extrañó de la ausencia del pequeño.
El autobús, una vez terminada la ruta, terminó aparcado en las cocheras que la empresa de transportes ‘Puesta del Sol’ tiene en Alcorcón. La conductora tampoco verificó en este momento el interior, así que el pequeño siguió durmiendo dentro, sin ser consciente de que estaba atrapado, según adelantó la Cadena Ser.
Según la denuncia de la madre ante la Policía Nacional, el escolar toma “medicación que le provoca somnolencia” y al despertar y ver que estaba solo tocó el claxon del vehículo.
Por esta señal “posiblemente un trabajador de la empresa de transportes, abrió la puerta del autobús”, pero tampoco advirtió la discapacidad del alumno y le dejó irse solo en un entorno complicado para un menor con TEA, junto a una autopista y un centro de residuos.
El menor estuvo andando alrededor de dos kilómetros hasta que entró en un supermercado de Alcorcón. Una vez allí, se acercó a una trabajadora y le pidió ir al baño.
En ese momento eran las 14.22 horas, según las cámaras del establecimiento. Una vez salió del aseo, el niño preguntó a la mujer cómo podía llegar a su colegio. Esto le pareció extraño a la trabajadora, así que decidió contactar con la Policía local de Alcorcón.
Los agentes lograron localizar al menor y avisaron a su padre informando “que había aparecido deambulando y desorientado por la calle“. Esto fue alrededor de las 14:50 horas y el menor debía estar de vuelta en su parada a las 15:10 horas.
Cuando los padres de Leo pidieron explicaciones al colegio, el director contactó con la monitora responsable de la ruta. Esta mujer aseguró que el niño nunca subió al vehículo. “Yo misma lo subí al bus”, exclamó la madre.
Después, la monitora rectificó y reconoció que alrededor del mediodía ella misma llamó a la conductora preguntándole por Leo, porque no recordaba haberle dejado en el colegio.
La madre ha insistido en que tanto la monitora como la conductora conocen los efectos que el medicamento producen en el menor.
Why this investor left the pursuit of billion-dollar exits to help employers hire people with autism
KEY POINTS
Brian Jacobs is leaving Emergence Capital to start his own firm, Moai Capital, where he’ll invest in start-ups focused on the “huge employment gap” for people with autism.
He started researching the subject after his son, who’s now 24, was diagnosed with autism spectrum disorder.
Jacobs co-founded Emergence in 2003, and his firm notched huge gains from early bets on Veeva Systems and Zoom.
Brian Jacobs, founder of Moai Capital, in front of the moai statues on Easter Island.
Moai Capital
As a venture capitalist, Brian Jacobs has spent almost three decades betting on software designed to make businesses more productive — from Salesforce to videoconferencing company Zoom. As a parent, he’s found that better technology isn’t always enough.
Jacobs’s 24-year-old son is one of 3.5 million Americans living with autism spectrum disorder. Despite a computer science degree from the prestigious California Polytechnic State University (Cal Poly) and the perpetual demand for technical talent in the Bay Area, he struggled when it came to finding a job.
After interviews and job fairs, he just wasn’t getting called back.
“Interviewing for a job is the worst thing for anyone on the spectrum,” said Jacobs, who asked that we not publish his son’s name for privacy reasons. “His brain works differently. He has to think through things and has to process more information just to get to the same answer, so that affects his speech.”
Like so many successful tech investors, Jacobs sees opportunity in market inefficiencies. This month, he announced his departure from Emergence Capital, the firm he co-founded in 2003, to start Moai Capital with $10 million of personal money. On its website, Moai describes itself as “an autism friendly workplace,” and one of its themes is autism employment, which Jacobs puts in the category of “impact investing.”
Not backing philanthropies
Moai is backing for-profit businesses, not philanthropic ventures.
But Jacobs isn’t expecting the kind of returns from impact investments that he experienced at Emergence, which generated billions of dollars from the IPOs of Zoom earlier this year and health-care software provider Veeva Systems in 2013.
“Traditional profit-driven VCs have not invested in these companies,” Jacobs said. “Impact investing is a new category. I’m learning new things. I’m seeing other like-minded investors making similar moves. I’ve learned a lot by talking to them but it also feel like we’re all venturing off into unproven territory.”
About one in 59 children is diagnosed with autism, according to the Centers for Disease Control and Prevention, and the numbers have been on the rise. Because autism affects communication and often makes ordinary social interactions particularly challenging, traditional businesses have to change how they interview, train and manage if they’re going to hire people on the spectrum.
There are compelling business reasons to make the effort. As Auticon, an IT consultancy backed by Jacobs, says on its website, people with autism tend to have certain cognitive advantages, like strong analytical abilities, “sustained concentration and perseverance when tasks are repetitive,” a sense of loyalty and attention to detail.
“There’s a huge employment gap for folks on the spectrum and that seemed like something I could have an impact on,” said Jacobs, who has spent the past six years on the board of the non-profit Autism Asperger Spectrum Coalition for Education, Networking and Development (AASCEND).
While Jacobs just officially launched Moai, whose name refers to the iconic hand-carved statues on Easter Island in the South Pacific Ocean, he started making some side investments over the last couple years in areas of more personal interest. Those have now become his main focus.
The three autism employment companies he’s backed are Auticon, founded in Germany; Daivergent, which develops work readiness and training programs for people on the spectrum; and Ultranauts, an IT services company looking to hire people with autism who thrive in remote working environments.
Rethinking the way companies hire
Moai participated in the $3.5 million financing round that Ultranauts announced in early August. The company has employees in 20 states providing the kind of work for large clients that puts it in competition with Capgemini and IBM. Three-quarters of its 60-plus-person staff are on the spectrum.
Rajesh Anandan and Arthur Shectman, two engineers from the Massachusetts Institute of Technology, founded the company in 2013. Anandan said he was drawn to the concept through conversations with his wife, who’d been a child psychologist and had a number of patients on the spectrum. She talked about a system in place that focuses on the challenges the so-called neurodiverse face rather than one that works to harness their innate skills.
“What if we focused on peoples’ strengths and redesigned the system so people are not penalized for being different?” Anandan said in an interview. “We’ve been able to prove we can build a team that includes colleagues who are on the spectrum who don’t have previous work experience in the field but are extremely capable, and groom that raw talent into skilled engineers.”
Anandan calls it a competitive advantage, not a charitable pursuit. At the same time it does create opportunities for financial independence for people on the spectrum and addresses a problem they face after age 21, when they’re generally no longer eligible to receive special government services.
Byran Dai, a data scientist and the CEO of Daivergent, has a 20-year-old brother on the spectrum. Dai said his younger sibling has some tech savvy, but the vocational programs available to him don’t take advantage of his abilities.
Daivergent CEO Byran Dai (second from left) with members of his team
Source: Daivergent
“I see my brother, he has an aptitude for computers but he’s stocking shelves at CVS,” said, Dai, who started Daivergent in 2017. “There’s a way to leverage the need and demand in AI and data science to bring folks into that population and start to upskill them.”
Daivergent’s employees provide technical and detail-oriented services to companies developing AI products. The start-up also has a work-readiness system to help the neurodiverse prepare for jobs and match them with companies looking to tap into the community.
One of the software systems Daivergent plugs into is SAP, which happens to be the same company that hired Jacobs’s son as a software developer last year. SAP launched its Autism at Work program in 2013 with a goal of employing 650 people on the spectrum by 2020. Jacobs said he’s been a longtime supporter of Jose Velasco, who runs the initiative, and that Microsoft, Salesforce and J.P. Morgan Chase are among companies that are learning what works as they put their own programs in place.
“They’re mostly learning from each other and figuring out how to adapt their hiring process, onboarding process and coaching process,” Jacobs said. “All these things you have to rethink, especially if you’re doing it at scale at a big company.”
Is the ‘Perfect Place’ to Invest as Multiples, Headwinds Decline
The autism therapy industry segment may see a bounceback in dealmaking in the not-so-distant future.
After reaching a fever pitch in 2019, the number of deals has trended downward, with 2022 seeing several high-profile stumbles of major platform companies, inflation, rising interest rates and workforce challenges.
However, several industry insiders attending the Autism Investor Summit tell Behavioral Health Business that these challenges have lessened to the point that dealmaking in the space could soon pick up again.
All the while, the factors that made autism therapy a desirable investment target remain. Many see it as one of the most attractive places in health care to make investments.
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“You’re going to have down years in every industry,” Chris Tillotson, CEO of Prospera Healthcare, told Behavioral Health Business. “But I would say from a financial standpoint, this is a perfect place to be.”
Prospera Healthcare is an applied behavioral analysis (ABA) provider based in Dallas. It was founded in 2021.
Tillotson, who spent more than 20 years in home health, likened the development of the autism therapy space to that in the home health and hospice space earlier in his career. That included a spike in interest from investors, high valuations, adjustments to payment models and rounds of highs and lows along the way with expectations for continued growth.
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It’s unclear when dealmaking will accelerate. But recent data gives an optimistic indication for the future.
Proprietary deal data tracked by The Braff Group found nine tuck-in deals closed in the first quarter of the year. Dexter Braff, president of the M&A advisory firm, said in a presentation that he was “surprised” by that number but that it remains to be seen if the first quarter was the start “of a trend or if it is an anomaly.”
“I was very encouraged to see the nine transactions … [If] that holds up, then the market is more solid than some of the bad things that have happened would suggest,” Braff said.
The Braff Group tracked 46 deals in 2019. In 2014, that number was 11 and last year, it was 40.
What hasn’t changed
Investors and providers alike still see autism therapy as a prime place to invest. However, investment in the space has gotten more realistic.
Mike Moran, co-founder and executive advisor of Calabasas, California-based M&A Healthcare Advisors, sees the downtick in deal volume as a normalization in the space. He also notes that deal volumes remain high compared to historic levels leading into 2019 and 2021, a historic dealmaking year for all of behavioral health.
“Autism services is still one of the most coveted segments that we reside in, in terms of banking and being an intermediary for those folks and a variety of segments,” Moran said. “If you have the right asset, autism services is essentially where you want to be that still remains most attractive in terms of the buyer — financial or strategic.”
The underlying demand for autism services is as high as ever, with providers frequently reporting much more demand than they can serve. That demand is likely to continue as stigma mitigation and detection of autism improve.
Autism diagnoses have increased in the U.S. A monitoring program operated by the Centers for Disease Control and Prevention raised its estimate of the rate of autism in youth to 1 in 36, up from 1 in 44, earlier in April 2023.
“From an investment perspective, all the fundamentals of what you’re looking for are very strong,” John Arnold, a transaction attorney and partner at Holland & Knight, told BHB.
Holland & Knight is a large Miami-based multispeciality law firm.
Arnold pointed to reimbursement trends, market fragmentation and growing demand as core to the investment opportunity. He also said workforce issues are lessening in the behavioral health space and that much of the COVID pandemic’s fallout has come under control.
Many of the truisms of investing in health care also apply to the behavioral health space.
“I think that a lot of the world understands now that healthcare is very recession-proof — whatever happens in the economy, we still always need these services,” Rachel Boynton, managing director and partner at the M&A consulting firm Vertess told BHB. “And there’s huge growth in the ABA space.”
What has changed
Increasing savvy on the part of investors coupled with recent industry struggles have pushed down the range for deal multiples in the autism therapy space.
Between 2020 and 2023, the typical multiple ranges for an autism therapy business was five times to 10 times earnings, down from 5.75 times earnings to 14 times earnings from the middle of 2016 to the middle of 2019.
“The valuation ranges at the top end of the marketplace are still very much higher than what we would expect in any other market segment,” Braff said. “Right now, the top end of the Medicare-certified home health market — which is a huge market that’s been consolidating for many, many, many years — is 8x.
“To get above that is really hard.”
Still, multiple compression may attract dealmaking because companies are more affordable.
Braff expects more opportunistic acquisitions, meaning “being able to buy stuff on the cheap as a buyer.”
“I do think there is a degree of optimism, and that’s supported by several things,” Ben Matz, managing director at the investment bank B. Riley Securities, told BHB. “Candidly, labor markets are cooling. There is the idea that reimbursement models will have to catch up.”
Matz said now may be an ideal time for reimbursement innovation and the advancement of value-based care. He also pointed to the increased use of technology to make the autism therapy space much more efficient.
When will autism therapy deals bounce back?
Matz estimated that dealmaking will pick up in the second half of 2023, noting the increase in quarterly dealmaking in the first quarter.
Arnold also expects deal activity to start picking back up in the next two to three quarters, adding that it’s not clear if that will be platforms “recapitalizing and trading or a return of M&A activity where platforms pursue growth through acquisitions.”
Rob Marsh, CEO of 360 Behavioral Health, sees a longer-term rationalization in the market before deal activity picks up.
“I think we are going to see this for the next 12 months or so where there’s just not going to be a whole lot of resources going onto ABA,” Marsh said. “Coming in 2024, I think you’ll see a lot more capital coming towards the M&A side.
Chatsworth, California-based 360 Behavioral Health provides autism therapy and support services and operates 17 locations in California.
“There’s lots of fragmentation still in the market; there are way more little mom-and-pop shops that are wanting to sites that are looking for larger organizations to pick them up.”
he Most Accurate Autism Theory You’ve Probably Never Heard Of
Monotropism is the idea that, when it comes to autism, one man can indeed be an island.
Monotropism doesn’t see this as a deficit, a disorder or any other kind of disaster though as, unlike certain other autistic theories, the monotropic mind makes isle autism seem like a spectrum themed paradise – where no shirts and no shoes are always encouraged (mainly because we find the fabrics irritating)
‘So what is the theory of Monotropism?’ I hear you ask, and how does it help families and carers find autistic loved ones better support? Well pull up a sun lounger, splash on some sunscreen and if you’re wearing a ‘suns out guns out’ vest, please change because, this sunny summer weekend, we’re going to be discussing exactly that in: Monotropism, the most accurate autism theory you’ve (probably) never heard of.
What Is Monotropism and How Does It Impact on Autism?
When it comes to interests outside our obsessions, we all know that the attention of autistic people can seem restricted. However, as evidenced in recent findings, non-autistic people aren’t that focused either as, regardless of whether you’re the world’s best or worst multi-tasker, the maximum number of things you can concentrate on, at the same time, is 4.
Whilst most people will subsequently spend their day mentally juggling what to pay attention to, the theory of monotropism proposes that, when the autistic mind reaches maximum capacity, we disassociate, throw up a ‘do not disturb’ sign and become intensely preoccupied with what we have set our minds to.
In practice, this theory might not seem so revolutionary, as explanations of autism have often included mentions of ‘obsessive tendencies’ but, what makes this idea so progressive, is that it addresses the baffling contradictory nature of many other autism quirks, for example:
Q: Why do autistic people seem dismissive of the feelings of some but over empathise with others? A: We always can emphasise, it’s just that sometimes we’re a little too distracted to notice that we should.
Q: Why are autistic people quiet as a mouse one moment but loud as an elephant the next? A: It depends on whether we’re talking about something we love or something we couldn’t care less about
Q: Why do autistic people seem to have a very high pain tolerance but then suddenly can be knocked down with a feather? A: Our minds are capable of blocking out any intrusion (even danger) but, when it’s right in front of us, it’s all we can think about.
Q: Why are autistic people so incredible at knowing the ins and outs of specific subjects but then struggle in other areas, like money management? A: Once again, we’re probably just not that interested in the other topics (although given that the finance industry is full of autists, it’s best not to make this assumption in the first place).
According to the theory’s founders: Dr Dinah Murray, Wenn Lawson and Mike Lesser, this way of thinking is best illustrated if you imagine that an autistic person has the ‘mind of a hunter’; an unquestionably awesome analogy which states that, when in the moment, distractions are not an option. To some, this also explains why many autistic people experience delays when learning to speak (as what is speaking other than a big interruption) but, admittedly, I find this idea to be a bit of a stretch…
How to Support Autistic People With Monotropism?
Nevertheless, if it is indeed true that all autistic actions are brought about by an unbreakable concentration of limited priorities, then this fascinating theory provides solid evidence behind some of the most recommended techniques of how to support autistic people.
What follows is an example of a few of these techniques which, even if the Monotropism theory is disproven tomorrow, should still bring success for members within our community:
1. Take things a step at a time
If autistic people are unlikely to shift from a task once it is set, then it only makes sense that you don’t overload us with more jobs than a high school employment fair. This means that, when it comes to organising our workload, longer tasks are preferred over short ones as, speaking from experience, it’s exhausting when we have to constantly shift from one chore to another.
Similarly, when it comes to large chores, don’t blow our minds by mentioning every detail at once. Instead, avoid using umbrella terms like ‘we’re going to buy clothes and, in their place, use a social story, followed by short reminders of individual tasks as they happen, i.e. we’re now choosing the clothes, we’re now trying the clothes on, we’re now going to spend the next hour looking for a cashier who disappeared the second they were needed.
2. Be direct when speaking to autistic people
Having such a narrow focus can often make a bad situation worse in that, if an autistic person finds something upsetting, it can be particularly difficult to think of anything else as we sink further and further in. Therefore, when trying to comfort or confront us, it’s best not to beat around the bush and instead find a way to get us to openly discuss the challenge to better process it.
Nevertheless, this doesn’t have to be a stationary task as, when I’m stewing, I always find it helpful if someone encourages me to talk it out whilst taking a walk. If this is something you want to try, emphasise to the autist that you will be continuing the discussion, but that you think it will do everyone good to stretch your legs. Sometimes a change in scenery can help influence a change in mind.
3. Let our interests guide the way
Due to much of the language surrounding autistic behaviour, there is an often-held belief that autistic ‘obsessions’ ‘routines’ and rituals’ are static events which slow down our development. This simply isn’t true though as, if you can integrate the interest into an activity, you will find that we are more responsive than ever.
Of course, sometimes you might worry that we have become lost in the things we love. However, monotropism proves this is not the case, wherein our minds aren’t caught in some kind of unmoving traffic jam, it’s more that we’ve taken a one-way road which will require a little patience before we turn around and are ready to go to someplace new.
Why Don’t More People Know About Monotropism?
As I have explained, monotropism is much more than the emperor’s new clothes of autism theories; it’s a complete idea with substance that carries a positive message about autism and how autistic people can be supported. Yet, what I can’t quite explain is how this competent idea, which carries so much potential, ended up so unknown within the very community it defines.
According to some, it seems to be that when the theory was originated, its authors were relatively unknown within the field and so may have been overlooked. However, others believe that after years of testing and trialling alternative autism theories, many academics find it challenging to write off their live’s work to pursue this new idea of a one-track mind (I know, the irony is not lost on me either).
This isn’t game over for the humble theory of monotropism though as, in the last couple of years, studies are finally putting the idea to the test. For now, that means we are at a loss as to just how accurate the explanation is but, given what you’ve read and your own experiences, I’m willing to bet that the future is very bright for the possibility of a monotropic mind.
El Autismo es un trastorno del desarrollo debido a una alteración de la maduración cerebral que provoca problemas para el desarrollo correcto de las vias de comunicación entre las diferentes áreas del cerebro y de esta forma, problemas para integrar la información recibida del exterior y gestionarla adecuadamente.
Cuanto más pequeños, más se confunde con otros problemas que no son autismo.
Cifras. Prevalencia actual alta. Relación con el % de fracaso escolar.
Causas del autismo: – Genéticas. explicar y justificar la relación con otros TND – Estudios Genéticos.
Síntomas del autismo: Deben darse los tres síntomas sin falta
– Trastorno Comunicativo
– Trastorno de Relaciones sociales
– Patrones de conducta repetitivos e inflexibles Diagnóstico de autismo
Terapias de estimulación cognitiva para el autismo
– Medicación para el autismo en los casos necesario
Si tienes un hijo con problemas de maduración o desarrollo, descargate ahora mismo mi guía gratuita para padres Mi hijo tiene problemas de maduración y/o desarrollo. ¿Por qué? ¿Qué hago para solucionarlo? Encontrarás instrucciones claras de los pasos a seguir para identificar la causa más probable gracias a una serie de cuestionarios adaptados personalmente por mi para que no pierdas el tiempo y vayas a tiro hecho a buscar la solución
A new study introduces the “Monotropism Questionnaire” as a potential diagnostic tool for autism, sparking widespread debate and interest.
Autism, a multifaceted neurodevelopmental disorder, is traditionally diagnosed through comprehensive behavioral evaluations and assessments. Typically, this involves interviews with caregivers, direct interactions with the individual, and the use of established diagnostic tools such as the Autism Diagnostic Observation Schedule (ADOS).
Autism is a complex condition that affects individuals in unique ways, with challenges in social communication, interaction, and repetitive behaviours. It often co-occurs with Attention Deficit Hyperactivity Disorder (ADHD), and both conditions share atypical attention profiles.
The Monotropism theory offers an explanation for the role of attention in autism. According to this theory, autistic individuals have a “monotropic” mind, characterised by a limited number of intense interests that capture their attention. In contrast, non-autistic individuals have a broader range of interests and can allocate attention to multiple things simultaneously.
Although research on the Monotropism theory is limited, it provides insights into various aspects of autism. It may influence how autistic individuals learn, engage in social interactions based on shared interests, and experience well-being through “flow states.” Monotropism also aligns with difficulties in cognitive flexibility, task switching, and processing multiple stimuli simultaneously.
Exploring the Questionnaire
The questionnaire presents a range of statements that are designed to capture different aspects of the respondent’s experience, including their interests, routines, attention focus, and social interactions, among others.
Factor 1: Special Interests
This factor explores the respondent’s passionate interests and how they affect their social interactions and problem-solving behaviours.
Factor 2: Rumination and Anxiety
This factor examines the intensity of focus and its potential link to heightened anxiety, particularly in uncertain situations.
Factor 3: Need for Routines
This assesses the role routines play in providing stability and safety, and how respondents manage uncertainty by establishing routines.
Factor 4: Environmental Impact on the Attention Tunnel
This investigates the respondent’s ability to concentrate in different environments, and their reactions to sudden disruptions or interruptions.
Factor 5: Losing Track of Other Factors When Focusing on Special Interests
This factor aims to understand whether respondents lose track of time, or neglect physical needs, when deeply involved in activities they are passionate about.
Factor 6: Struggle with Decision-Making
This assesses the difficulty respondents might face when making decisions, particularly when there is a lot of information to consider.
Factor 7: Anxiety-Reducing Effect of Special Interests
This examines the soothing effects of engaging in preferred activities, and how such engagement influences the respondent’s anxiety levels and social interactions.
Factor 8: Managing Social Interactions
This assesses the respondents’ comfort level with social interactions, how they interpret and react to social stimuli, and the distress they might experience due to unexpected reactions from others.
The Results of the Study: Monotropism, Autism, and ADHD
This research explored the link between monotropism and autism, and how ADHD might affect this relationship. It involved 1,110 participants, a mix of autistic and non-autistic individuals aged between 16 and 78.
Key findings include:
Autistic participants tended to show higher levels of monotropism than those without autism.
ADHD can alter this relationship. Autistic individuals with ADHD had lower monotropism scores than expected, suggesting that these conditions interact in complex ways.
The questionnaire revealed eight distinct aspects or ‘factors’ of monotropism, giving a fuller picture of this condition.
The questionnaire also proved to be consistent and reliable when used multiple times.
The introduction of the “Monotropism Questionnaire” as a potential diagnostic tool for autism has ignited a significant discussion and engagement on digital platforms, with its insights into the role of attention and the unique characteristics of autistic individuals.
While further research is necessary to gain a comprehensive understanding of the implications of the Monotropism theory and its relationship with autism and ADHD, the questionnaire actively provides valuable insights into the experiences and behaviors of individuals with autism.
The Monotropism Questionnaire is not a definitive diagnostic tool and should not replace professional medical advice or evaluation. Consultation with healthcare providers remains essential for accurate diagnosis and appropriate treatment.
Disclaimer: The information contained in this article is intended solely for informational and educational purposes. It is not, in any circumstance, meant to be used as a substitute for professional medical advice, diagnosis, or treatment. The Monotropism Questionnaire, while a valuable tool for understanding the concept of monotropism and its potential relevance to autism, is not a definitive diagnostic tool. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition or treatment.
El joven con autismo que encontró en la música su modo de expresión y lidera una banda de rock.
Iván Demirci fue diagnosticado con trastorno del espectro autista a los 3 años. No se comunica de manera verbal, pero lo hace a través de la percusión. “Transmite mucha fortaleza desde arriba del escenario. Ese es su gran potencial”, cuenta Ricardo, su papá.
Iván Demirci sonríe con la mirada. Hace percusión con sus manos y con sus pies. No hay sonido o melodía que se escape a sus inquietos sentidos que todo quieren reproducir y sentir en su cuerpo. Hace 11 años, el joven, que de niño fue diagnosticado con autismo, lidera la banda musical “Ivan y sus amigos”.
Gracias a la música mejoró la comunicación que su condición del espectro autismo no verbal parecía limitar. Gracias al apoyo de músicos profesionales e integrantes de la banda, el joven de 24 años compone e interpreta sus propias canciones y hace covers.
La música como expresión
“Creo que a los dos días de nacer comenzó a mostrar su amor por la música”, cuenta el papá del niño nacido en la mañana del 25 de junio de 1999. “Él es mi gran orgullo, mi maestro porque todo el tiempo nos enseña algo y tiene esa mirada tan hermosa que te hace ver que todo es posible”, remarca emocionado el hombre.
Poco antes de que cumpliera tres años,a Iván le diagnosticaron TGD (Trastornos generalizados del desarrollo), hoy llamado Trastorno del Espectro Autista. “No tenía comunicación verbal, y con Marta, mi esposa, nos dimos cuenta de que algo pasaba. Él iba al jardín y la maestra nos contó que no veía que avanzara como el resto de sus compañeros”, recuerda. Finalmente una neuropediatra le daría el diagnóstico.
La primera reacción fue la incredulidad y a los tres días la promesa de hacer todo para que fuera feliz. Y lo es. Al llegar a la escuela primaria, se convirtió en el primero del colegio en asistir con maestros integradores y de tomar terapias ocupacionales. Eso lo ayudó a aprender. Y aunque no desarrollaba el habla, gracias a la música, que ya reproducía incansablemente, encontró su propia manera de comunicarse.
Iván en el club de rugby
“Él habla muy poco y es fanático de la música. Fue uno de sus terapeutas el que se dio cuenta y me dijo: ‘¡Más que un hijo con autismo tenés un hijo músico!’. Y empezó a ir a una escuelita de rock convencional después del colegio. Ahí se encontró con Juan Tenaglia, que es e baterista de la banda y coordinador musical. Así arrancaron, hace 11 años. La verdad, él encuentra en la música esa cosa tan especial que lo hace vibrar y lo potencia al máximo. Es impresionante ver la diferencia en una persona cuando puede desarrollar lo que ama hacer”, dice orgulloso.
Iván tiene un set de percusión y además aparatos que pueden reproducir el sonido de otros instrumentos. Lo maravilloso de él es que el don innato que tiene siempre hizo que aprendiera de manera autodidacta.
“Iván escucha un tema y se pone de costado y empieza a generar el ritmo con lo que tiene a mano. Y si no tiene nada, lo hace con el pecho, copia el ritmo enseguida y canta todos los temas, en castellano, en inglés. Hace unos días puso un tema en chino, lo empezó a tararear y después le sacó el ritmo y lo empezó a tocar y hasta a cantar… ¡Es increíble! Tiene un don natural, sí, pero más allá de esto, lo importante que es Iván transmite mucha fortaleza desde arriba del escenario. Ese es su gran potencial y lo lleva al extremo, no se queda con nada”, cuenta su papá.
La familia Demirci
La banda, que se presentará con su nuevo integrante, Matías La Groteria, está integrada además por Juan Tenaglia y Pato Álvarez. Hasta el momento realizaron más de 26 presentaciones y giras a nivel nacional y regional. En el Día Mundial de Concienciación sobre el Autismo, cada 2 de abril se presenta en evento especiales por la fecha.
“Los tres músicos que lo acompañan, que son profesionales que no están dentro del espectro autista, demuestran la importancia de ver en él a un par, a otro músico. Ellos se enfocaron en el talento de Iván. De esa manera demuestran cómo se rompen las barreras, la discriminación y se logra la convivencia. Eso creo que es uno de los mensajes más importantes que deja la banda en el escenario: miremos y enfoquémonos en la fortaleza de las personas”, subraya orgulloso el hombre.
Reflexivo, Ricardoo sigue: “Claro que no logramos sólo con esto vivir en una sociedad en la que estemos conviviendo con igualdad. Yo no uso más la palabra ‘integración’, creo que la palabra que debemos usar es ‘convivir’. Vivir todos juntos, más allá de lo que cada uno tenga, porque esto demuestra que pese a no poder expresarse de manera verbal lo hace a través de la música y eso da cuenta del poder que tiene eso”.
Iván y sus amigos
Iván compone sus propios temas, domina el xilófono, los tambores Ngoma y es el líder de la banda. “Los fue armando a través de las series de televisión que veía cuando era chico. Uno de sus temas emblemáticos es el del Ratón Pérez. Lo cantaron en una presentación en un jardín y era increíble ver cómo todos se ponían a bailar. Todos los días me sorprende a mí y al público”, asegura el papá del chico.
Emocionado, Ricardo agrega: “Arriba del escenario, él domina el mundo. Cuando está abajo es tímido, no habla, a veces se tapa los oídos, pero cuando sube se pone a cantar a capella el primer tema y te das cuenta que ahí él se siente pleno”. El primer concierto público fue en una acto escolar por el Día de la Familia, a sus 15 años.
Iván tiene un hermano menor, Brian, que, según su padre, es su norte. “Tienen una relación tan linda, pero tan linda que ni dos hermanos de sangre lo tienen”, cuenta sobre los jóvenes, ambos adoptados de bebés.
Alicia Navarro en una imagen de 2014 y una de 2023 respectivamente
Alicia Navarro, la menor de 14 años con autismo que desapareció en 2019 en Glendale (Arizona, Estados Unidos), ha sido encontrada sana y salva en un pueblo tras personarse ella misma en la comisaria de la Policía Local.
Así lo ha confirmado el Departamento de Policía de Glendale, aunque no ha aportado la ubicación exacta sí ha revelado que la joven ha estado viviendo en un pequeño pueblo cerca de la frontera entre Estados Unidos y Canadá.
Alicia Navarro fue hasta la comisaría de la Policía Local donde vivía para identificarse como la menor que desapareció en 2019. Según la Policía, Navarro tenía la intención de quitarse de la lista de personas desaparecidas.
Desaparecida en medio de la noche
La joven desapareció en medio de la noche en septiembre de 2019 cuando tenía 14 años. Su madre, Jessica Núñez, estaba especialmente preocupada porque su hija tomaba medicación.
La progenitora vio a su hija por última vez en la madrugada del 15 de septiembre de 2019 cuando su hija fue a por un vaso de agua, según contó. A la mañana siguiente cuando estaba preparando el desayuno se dio cuenta que la puerta trasera de la casa estaba abierta.
Cuando revisó el patio, descubrió varias sillas junto a una pared. Al a corroborar si Alicia Navarro seguía en su habitación encontró una nota en el escritorio con un mensaje: «Me escapé. Regresaré. Lo juro. Lo lamento».
Su madre la ha estado buscando desde entonces sin descanso. Tras conocer el desenlace feliz, Jessica Núñez ha querido agradecer a todos la ayuda brindada con un vídeo publicado en Facebook.
Thanks for watching!
PUBLICIDAD
Alicia Navarro fue hasta la comisaría de la Policía Local donde vivía para identificarse como la menor que desapareció en 2019. Según la Policía, Navarro tenía la intención de quitarse de la lista de personas desaparecidas.
La joven desapareció en medio de la noche en septiembre de 2019 cuando tenía 14 años. Su madre, Jessica Núñez, estaba especialmente preocupada porque su hija tomaba medicación.
La progenitora vio a su hija por última vez en la madrugada del 15 de septiembre de 2019 cuando su hija fue a por un vaso de agua, según contó. A la mañana siguiente cuando estaba preparando el desayuno se dio cuenta que la puerta trasera de la casa estaba abierta.
Cuando revisó el patio, descubrió varias sillas junto a una pared. Al a corroborar si Alicia Navarro seguía en su habitación encontró una nota en el escritorio con un mensaje: «Me escapé. Regresaré. Lo juro. Lo lamento».
Su madre la ha estado buscando desde entonces sin descanso. Tras conocer el desenlace feliz, Jessica Núñez ha querido agradecer a todos la ayuda brindada con un vídeo publicado en Facebook.
Jessica Núñez ha dado las gracias por haber encontrado sana y salva a su hija. «Para todos los que tienen seres queridos perdidos, quiero que usen este caso como un ejemplo de que los milagros existen», ha dicho. La desaparición de Alicia Navarro sigue siendo un misterio del que no se han dado más detalles.
Este manual es para las familias de los niños con autismo* y otros trastornos del desarrollo neurológico que han decidido usar medicamentos para ayudar a tratar el comportamiento desafiante de su hijo o manejar cuestiones emocionales.
*Para los fines de este manual, el término «autismo» se usará para describir a los niños con todo tipo de trastornos del espectro autista, incluidos el trastorno autista, el trastorno de Asperger y el trastorno generalizado del desarrollo no especificado (TGD-NE).
Este manual ayudará a las familias a: Trabajar con el médico o enfermero del niño para aprender sobre los medicamentos Obtener la información que necesitan sobre los medicamentos recomendados Hacer las preguntas correctas Administrar los medicamentos de manera segura Saber si el tratamiento está funcionando Saber si existen efectos secundarios y qué hacer Tener confianza y ser defensores informados de su hijo Este manual ayudará a los prestadores de atención de la salud a: Explicar las opciones de medicamentos a las familias Enseñar a las familias a vigilar la eficacia Enseñar a las familias a controlar los efectos secundarios y la respuesta adecuada Brindar información sobre el manejo de los efectos secundarios comunes Ser claros con las familias acerca de los objetivos, posibles riesgos y beneficios del tratamiento.
Muchos niños con autismo tienen comportamientos desafiantes o dificultades con sus sentimientos y emociones. Muchos tratamientos ayudan. Los medicamentos son uno de esos tratamientos, pero los medicamentos no son adecuados para todos los niños.
Es mejor usar los medicamentos solo después de haber intentado los métodos de comportamiento y educativos.
Las familias que aún están decidiendo si usarán medicamentos se beneficiarán con otro manual.
Crean un “Netflix” para niños y niñas con trastorno del espectro autista
Se trata de una solución de vídeo que “proporciona contenido adecuado a sus edades y que se ajuste a sus preferencias visuales”, señalan sus autores.
“Todo comenzó gracias a mi sobrino de 15 años – explica Guilad Piker, un productor de televisión israelí -.
Está en el espectro del autismo no verbal, y si bien ve la tele a ratos, lo que realmente le fascinan son los títulos de crédito”.
Con esto en mente Piker le creó un video de Netflix 30 minutos solo con créditos finales por su cumpleaños, intercalados con mensajes y el joven no se despegó de la pantalla. Eso lo llevó a investigar qué ven los niños autistas.
“Cada niño es diferente. Pero, por otro lado, hay patrones claros – añade Piker- . Y eso me llevó a crear una solución de vídeo que proporcione contenido adecuado a sus edades y que se ajuste a sus preferencias visuales”.
Piker está a punto de lanzar lo que él llama “Neflix para los neurodiversos”, que es en realidad el primer canal de streaming del mundo pensado las personas que perciben e interactúan con el mundo de modos diferentes a los convencionales.
Y lo lanzará en Estados Unidos, para empezar. “En EEUU hay unos 250 canales de TV que muestran de todo, desde telenovelas asiáticas hasta programas para perros solos en casa… yo creo que los autistas se merecen su canal…”, afirma el productor.
El proyecto se llama Poppins y está pensado para que los niños autistas lleguen a su potencial máximo usando esta tecnología y no que pierdan el tiempo frente a la pantalla, como suele pasar…
Las personas con TEA a menudo tienen dificultad para procesar estímulos sensoriales, por eso el primer paso de la empresa de Piker fue desarrollar una herramienta que ajustase la experiencia visual, como filtros que les ayudan a concentrarse en lo que ven o a no rechazarlo.
El widget de video de Poppins les permite, por ejemplo, convertir en dibujo animado una serie con personas, reducir la saturación de color, simplificar las líneas del contenido, y más. Y ya está funcionando en el canal educativo e infantil Kan.
Después de crear la herramienta, el equipo de Piker han construido una biblioteca de contenido siguiendo lo que, hasta ahora, se sabe de las preferencias de espectadores con TEA.
Se sabe, por ejemplo, que se suelen sentir confundidos cuando hay muchos personajes, cuando hay violencia o escenas poco claras, cuando hay emociones complejas o cuando la voz que escuchan no es la de la persona que ven en la pantalla, por ejemplo.
“Es más probable que a los neurodivergentes les molesten las explosiones, las luces intermitentes, los ruidos fuertes, y que se calmen con las imágenes de un viaje en ascensor o una puerta giratoria – confirma Piker- .
Los ascensores son un gran favorito de este público: verlos bajar y verlos subir”.
Por ahora solo están eligiendo contenido que ya existe, por ejemplo, la familia de elefantes Babar sí, pero no Power Rangers, para su plataforma, pero van a comenzar a producir su propio contenido en los próximos meses.
Al analizar las preferencias de este público mediante inteligencia artificial, el sistema ofrecerá pistas sobre sus intereses. “Recogemos datos y creamos un perfil de usuario único, un poco como hace con nosotros YouTube y el resto, solo que con otro fin – concluye Piker- .
Así, si un niño que observa ascensores y perros que saltan y cosas así podemos decirle a los padres que tiene interés en el movimiento vertical. También podemos ver cómo es su capacidad de atención y darle esa información a sus padres para que trabajen con él conociendo ese parámetro”.
MESA EN ARIZONA LA PRIMERA CIUDAD EN ADAPTARSE A RECIBIR TURISTAS CON AUTISMO
Mesa, la primera ciudad de Estados Unidos que se adaptó para recibir turistas con autismo
En 2018, durante unas vacaciones familiares, Marc García se sorprendió por las miradas extrañas y la falta de paciencia que el personal turístico tenía con su hijo autista.
Como director ejecutivo y presidente de la oficina de turismo “Visit Mesa“, en el centro-sur de Arizona, se comprometió a su regreso a garantizar que los viajeros neurodiversos que visitaran su ciudad tuvieran una mejor experiencia en su viaje que la que él tuvo con su familia.
De hecho, viajar puede ser tan estresante para las personas neurodiversas que el 87% de las familias con integrates autistas no se van de vacaciones, según una encuesta realizada por Autism Travel, una rama de la Junta Internacional de Credenciales y Estándares de Educación Continua (IBCCES).
La sobrecarga sensorial involucrada en los viajes-incluidos los ruidos fuertes, los cambios en la dieta y la interrupción de la rutina- puede causar incomodidad y arrebatos si no se maneja y aborda de forma comprensiva.
Pero ciudades como Mesa finalmente están implementando las herramientas de accesibilidad que permitan disfrutar a todos, no solo a los neurotípicos.
Como punto de partida, García trabajó en su oficina de turismo para obtener capacitaciones y certificaciones del IBCCES, un organismo que ayuda con formación profesional para trabajar con personas con trastornos cognitivos.
El objetivo es estar mejor equipados para interactuar con personas neurodiversas en diferentes entornos.
Aprendienco cómo empatizar
Para negocios como hoteles, restaurantes y atracciones, esto significa que el personal de cara al público está capacitado para comprender qué es el autismo, cómo empatizar con la forma en que las personas autistas experimentan el mundo y cómo comunicarse de manera más efectiva con ellos.
Pie de foto,Paso del tranvía por el centro de la ciudad de Mesa.
En 2020, uno de cada 36 niños fue diagnosticado con autismo en Estados Unidos, según los Centros para el Control de Enfermedades.
Y la Organización Mundial de la Salud estima que uno de cada 100 niños tiene autismo en todo el mundo, un número que sigue aumentando año tras año, lo que lo convierte en el trastorno del desarrollo con la tasa de crecimiento más rápida del mundo.
Además de compartir estadísticas y educación sobre el autismo, la capacitación de IBCCES también brinda orientación práctica sobre formas de adaptarse mejor a las personas con neurodiversidad.
“Por ejemplo, algunas personas aprenden más a nivel visual, por lo que podemos ofrecerles folletos, panfletos y mapas”, dijo Zoey Shircel de “Visit Mesa”, que está certificada en viajes para personas con autismo.
Shircel afirma que el programa de capacitación también le enseñó que algunas personas pueden necesitar un poco más de tiempo para absorber información, como dónde está una atracción o qué lugares hay que visitar.
El entrenamiento le abrió los ojos a cuántos viajeros podrían tener desafíos invisibles.
“Antes de obtener la certificación, no era consciente de que las personas podían tener una discapacidad oculta”, dijo.
“Pero después del entrenamiento, hay más personas abiertas a hablar sobre lo que podrían necesitar o qué ayuda adicional podemos brindarles, sin miedo ni vergüenza”, añadió.
Girasoles de advertencia
Mesa fue la primera ciudad de Estados Unidos en adoptar el programa Girasol para discapacidades ocultas en 2021, introducido por primera vez a nivel mundial en el Reino Unido, y la oficina de turismo y otras atracciones ofrecen cordones y brazaletes gratuitos con temas de girasoles a los visitantes.
El símbolo soleado alerta a los empleados del sector turístico y otros miembros informados de la comunidad que esta persona o familia podría necesitar ayuda adicional o algo de paciencia extra para visitar un destino.
Después de ver el éxito con la certificación en la oficina de turismo, toda la ciudad de Mesa entendió el valor de volverse más inclusiva y se puso a trabajar para conseguir que el 80% de empleados en puestos orientados al público -incluidos los trabajadores de parques, la policía y los bomberos- estuvieran capacitados para obtener la certificación de un Centro Certificado de Autismo (CAC) oficial.
En noviembre de 2019, la ciudad se convirtió en la primera Ciudad Certificada para Autismo en el mundo, y otras oficinas de turismo y ciudades han comenzado a seguir su ejemplo.
Muchas otras oficinas de turismo y destinos tienen o están trabajando actualmente para ser Centros de Autismo Certificados como Visalia, en California; High Point, en North Carolina; Palm Springs, en California; Toledo, en Ohio y también Dubái en Emiratos Árabes Unidos.
Pero la certificación está lejos de ser un conjunto de requisitos que se presentan una sola vez.
El programa requiere capacitación anual y recertificación para garantizar que los empleados se mantengan actualizados sobre las últimas prácticas y herramientas neuroinclusivas.
En Mesa, más de 60 empresas y organizaciones diferentes han completado la capacitación para convertirse en CAC.
Pie de foto,Recreación de un evento histórico en Arizona.
Los visitantes pueden ver el resultado de esto en lugares como el Museo de Historia Natural de Arizona, que proporciona una guía útil del impacto sensorial de diferentes galerías, a la que se puede acceder en línea o ver en la entrada de cada sala.
Por ejemplo, la guía califica a Dinosaur Hall con un cinco de 10 en estimulación sensorial sonora, un tres en vista, un dos en tacto y solo uno en olfato y gusto.
Guías como esta ayudan a las familias a planificar las rutas correctas a través del museo, así como a encontrar áreas tranquilas designadas si la sobreestimulación se convierte en un problema.
“Los museos son lugares especiales donde la gente viene a aprender, relajarse y crear recuerdos con amigos y familiares“, dijo Alison Stoltman, subdirectora de la institución.
“Sin embargo, las atmósferas altamente estimulantes pueden ser una barrera para algunos, limitando la accesibilidad”.
Pie de foto,Dos mujeres pasean por Mesa.
Para ayudar, el museo llevó a cabo recientemente su primer evento “sensorial suave”.
Abrió temprano con entradas limitadas y se moderaron las experiencias más estimulantes.
“Tuvimos excelentes comentarios con numerosos relatos de familias de que esta suave experiencia abrió la posibilidad de que sus familiares nos visitaran”, dijo Stoltman.
Para Jennifer Hedgepeth, coordinadora de servicios de eventos en Centro de Artes de Mesa, la formación fue especialmente personal ya que tiene un hijo con autismo.
“Muchos de los aspectos de la capacitación eran cosas que ya sabía, pero fue bueno profundizar en algunas cosas“, dijo.
“También es muy bueno saber que todos mis compañeros de trabajo y la ciudad de Mesa reciben la misma instrucción”.
Aunque los espectáculos que se realizan en el Centro de Artes de Mesa pueden variar en cuanto a la estimulación sensorial, el centro ofrece adaptaciones como mantas pesadas y auriculares con cancelación de ruido que pueden ayudar durante una presentación, así como espacios tranquilos en caso de que alguien necesite un momento de descanso.
“Si viajas a un país extranjero y no hablas el idioma, saber que tienes acceso a alguien como un intérprete puede ayudarte de una mejor manera”, dijo Hedgepeth.
“Las personas que lleguen deben sentirse cómodas y seguras”, añadió.
Grandes Ligas de Béisbol
Mesa es uno de los centros de entrenamiento de primavera más grandes del país para las Grandes Ligas de Béisbol, y varios equipos y sus estadios en Mesa también han obtenido la certificación.
Pie de foto,Algunas características del béisbol pueden ser particularmente atractivas para las personas neurodiversas.
Debido al ambiente al aire libre, al ritmo previsible de su juego y a la importancia de las estadísticas, el béisbol puede ser un pasatiempo atractivo, pero los estadios y los juegos en vivo a veces pueden ser demasiado estimulantes para las personas neurodiversas.
Para animar a estos fan, los Atléticos de Oakland se convirtieron en el primer equipo en obtener la certificación CAC en 2020 al capacitar a su personal en el Estadio Hohokam, la casa de primavera del equipo en Mesa, donde los fans pueden ver los juegos desde finales de febrero hasta finales de marzo antes de que comience la temporada regular.
Mesa también ofrece turismo al aire libre, ya que es vecino del cercano Bosque Nacional Tonto.
Dentro de los límites de la ciudad, el Distrito de Parques y Recreación de Mesa (también certificado por CAC) ofrece una serie de actividades accesibles al aire libre, desde campamentos de “bajo riesgo” (donde los guardabosques proporcionan una tienda de campaña y enseñan habilidades para acampar y pasar la noche sin problemas), entrenamiento de pesca y talleres para quemar malvaviscos en la fogata.
Para proporcionar una forma de interactuar con atracciones y restaurantes aptos para autistas en toda la ciudad, “Visit Mesa” ha creado el Autism GeoTour, ideal para familias.
Permite a los visitantes descubrir geocachés ocultos en ubicaciones de CAC a través de la aplicación Geocaching. Si los visitantes desbloquean cinco o más en el recorrido, pueden regresar al Centro de visitantes de Mesa para obtener un premio especial.
Pie de foto,Los paisajes naturales también son un atractivo de la región.
A pesar de que ha logrado grandes avances en accesibilidad, Mesa no está lista para reducir la velocidad en el corto plazo, un requisito para convertirse en la ciudad más accesible del país.
Con ese fin, Mesa se asoció recientemente con Aira, un servicio de interpretación visual a pedido para personas ciegas o con baja visión.
La aplicación permite a los visitantes acceder a un agente capacitado que puede ayudar con la planificación del viaje, la lectura de menús y otros servicios.
En 2023, Mesa se unió a “Wheel the World“, un sitio web que mapea información detallada de accesibilidad de destinos con fotos y medidas (por ejemplo, ver si un hotel tiene rampas en sus espacios de entrada), para que los visitantes discapacitados puedan planificar su viaje más fácilmente y encontrar los hoteles más adecuados a sus necesidades.
“Tener información de antemano, hace que viajar sea un poco menos estresante”, dijo Shircel.
Ella espera que todas las ciudades del mundo eventualmente sigan el ejemplo de Mesa.
De esa manera, los viajeros de todo tipo pueden disfrutar más plenamente de cualquier destino y enriquecer la conversación intercultural de formas nuevas y neuroinclusivas.
Quiero agracecer en primer lugar todos los comentarios que se escriben diariamente de los articulos/entradas que se realizan en el BLOG.
First of all I want to thank all the comments that are written daily of the articles/entries that are made in the BLOG.
Son actualmente unas 400 entradas diarias, que para una única persona a cargo de la web que no es otra que el creador de la misma, son muchos comentarios, no disponiendo de tiempo ni de agradecer los mismos ni de responder.
There are currently about 400 daily entries, which for a single person in charge of the web who is none other than its creator, are many comments, not having time to thank them or respond.
Lamentablemente tengo también que eliminar muchos comentarios que no esten escroitos en Español/Ingles/Frances ya que muchas veces desconozco que idioma es y también no se que contenido tienen.
Unfortunately I also have to delete many comments that are not written in Spanish/English/French since many times I do not know what language it is and I also do not know what content they have.
Sin embargo, el objetivo de la Web no se ha alcanzado en todo este tiempo, desde su creación en 2018, no ha existido una sola donación, ni tampoco se ha interesado nadie por los PROYECTOS que se incluyen en una de las paginas de la web, estos proyectos eran y son la parte fundamental de la creación de esta web. Habría sido interesante un filántropo pero no debe haber en los tiempos actuales esas personas.
However, the objective of the Web has not been achieved in all this time, since its creation in 2018, there has not been a single donation, nor has anyone been interested in the PROJECTS that are included in one of the web pages. , these projects were and are the fundamental part of the creation of this website. A philanthropist would have been interesting, but there shouldn't be such people in today's times.
Seguiré trabajando en esta Web incluyendo artículos interesantes para el autismo y su mundo y de nuevo agradezco el ínteres y los comentarios.
I will continue working on this website including interesting articles for autism and its world and again I appreciate your interest and comments.
Autism Spectrum Disorder: 10 things you should know
Professor Andrew Whitehouse leads the Autism Research Team at Telethon Kids Institute, working with children with autism and their families to reduce the disability associated with the disorder. In this short video he shares his top ten things that everyone should know about autism spectrum disorder. — The Autism Research Team is a research centre at the Telethon Kids Institute. A key aim of the Autism Research Team is to develop new and innovative ways to deliver autism therapy to ensure every child has the very best opportunities in life.
Autism research: Understanding reluctance to make eye contact with others
A hallmark of autism spectrum disorder, ASD, is the reluctance to make eye contact with others in natural conditions.
Although eye contact is a critically important part of everyday interactions, scientists have been limited in studying the neurological basis of live social interaction with eye-contact in ASD because of the inability to image the brains of two people simultaneously.
However, using an innovative technology that enables imaging of two individuals during live and natural conditions, Yale researchers have identified specific brain areas in the dorsal parietal region of the brain associated with the social symptomatology of autism.
The study, published Nov. 9 in the journal PLOS ONE, finds that these neural responses to live face and eye-contact may provide a biomarker for the diagnosis of ASD as well as provide a test of the efficacy of treatments for autism.
“Our brains are hungry for information about other people, and we need to understand how these social mechanisms operate in the context of a real and interactive world in both typically developed individuals as well as individuals with ASD,” said co-corresponding author Joy Hirsch, Elizabeth Mears and House Jameson Professor of Psychiatry, Comparative Medicine, and of Neuroscience at Yale.
The Yale team, led by Hirsch and James McPartland, Harris Professor at the Yale Child Study Center, analyzed brain activity during brief social interactions between pairs of adults — each including a typical participant and one with ASD — using functional near-infrared spectroscopy, a non-invasive optical neuroimaging method.
Both participants were fitted with caps with many sensors that emitted light into the brain and also recorded changes in light signals with information about brain activity during face gaze and eye-to-eye contact.
The investigators found that during eye contact, participants with ASD had significantly reduced activity in a brain region called the dorsal parietal cortex compared to those without ASD. Further, the more severe the overall social symptoms of ASD as measured by ADOS (Autism Diagnostic Observation Schedule, 2nd Edition) scores, the less activity was observed in this brain region.
Neural activity in these regions was synchronous between typical participants during real eye-to-eye contact but not during gaze at a video face.
This typical increase in neural coupling was not observed in ASD, and is consistent with the difficulties in social interactions.
“We now not only have a better understanding of the neurobiology of autism and social differences, but also of the underlying neural mechanisms that drive typical social connections,” Hirsch said
U.S. study charts changing prevalence of profound and non-profound autism
Community traits: Children with profound autism are more likely to be girls than are their peers with non-profound autism.
Laurence Mouton / Getty Images
More than a quarter of autistic 8-year-olds in the United States have profound autism, according to a study published today in Public Health Reports. Although the overall prevalence of profound autism in this age group increased from 2002 to 2016, the prevalence of non-profound autism did so at a sharper rate, the findings show.
The results align with the idea that much of autism’s dramatic rise over the past three decades stems from diagnostic changes. “We are now finding people with autism who don’t have intellectual disability and who have more fluent language” — and who may not have been diagnosed 20 or 30 years ago, says Catherine Lord, distinguished professor of psychiatry and education at the University of California, Los Angeles, who was not involved in the work.
The term profound autism, introduced in December 2021 by Lord and her colleagues as part of the Lancet Commission on the Future of Care and Clinical Research in Autism, describes autistic people who likely need lifelong 24/7 care, many of whom have intellectual disability, limited communication abilities or both. The commission estimated at the time that anywhere from 18 to 48 percent of the autistic population might fit this description, according to an analysis of three separate datasets from the U.S., the United Kingdom and Norway.
The new estimate — the first based on data from 20,135 autistic children, collected by the U.S. Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring (ADDM) Network — falls in the middle of that range at 26.7 percent.
But non-white autistic children are more likely than their white peers to have profound autism, the work shows. The prevalence is 76 percent higher for Black children, 55 percent higher for children from Asian, Native Hawaiian or other Pacific Islander backgrounds, 50 percent higher for Hispanic children and 33 percent higher for American Indian (Native American) and Alaska Native children. Children with profound autism are also more likely to come from low socioeconomic backgrounds compared with their peers with non-profound autism.
Those differences point to disparities in how clinicians diagnose autism across different communities, Lord says.
“We probably are not picking up the more able kids with autism in minority ethnic groups,” she says. “It tells us more about who’s not there than who’s there.”
Profound autism prevalence also varies by gender and region, the study shows. The results can help researchers and clinicians plan for the services and supports that people who meet the criteria for profound autism may need over their lifetime, says study investigator Michelle Hughes, an epidemiologist at the CDC. “We saw this as an opportunity to bring data to the conversation,” she says.
The ADDM Network has released reports on autism prevalence at study sites in the U.S. every two years since 2000. For those reports, the researchers use data from medical and educational records to estimate the number of 4- and 8-year-olds with autism in a given year. The network is continuing to track autism prevalence at its current sites and announced yesterday that it plans to expand its surveillance to 5 additional sites — including one in Puerto Rico — for the next funding cycle.
In the new study, CDC researchers used a similar approach to estimate the number of 8-year-olds with profound autism across 15 sites for the surveillance years between 2000 and 2016, excluding 2012 and 2014 because they did not have information on children’s verbal abilities for those years. They classified children as having profound autism if a clinician reviewing their records determined they fit the diagnostic criteria for autism and their records indicated that they were nonverbal, minimally verbal or had an IQ below 50.
In 2000, about 27 of every 10,000 children within the network had profound autism, and 39 in 10,000 had non-profound autism, the team found. And although prevalence increased for both groups over the next 16 years, that of non-profound autism did so more rapidly — reaching 143 per 10,000, compared with 46 per 10,000 for profound autism.
Group change: As more children with non-profound autism are diagnosed over time, the proportion of the autistic population with profound autism decreases.
Courtesy Hughes et al. / CDC
Profound autism prevalence is also relatively stable across regions, whereas the prevalence of children with non-profound autism varies more widely, the study shows: from 260 per 10,000 in New Jersey to 104 per 10,000 in Colorado for the 2016 surveillance year.
Those regional differences may be explained by how accessible services are in a given state, as well as the site’s racial and ethnic makeup, Lord says.
Autistic girls are about 25 percent more likely to be classified as having profound autism than their male peers, the findings show. Although it is possible that many autistic girls with non-profound autism are not diagnosed, it may also be that girls are more likely than boys to survive with the genetic mutations that cause this presentation of autism, Lord says.
The findings fit, to a large degree, with what the Lancet commission expected, Lord says. For example, most of the children with profound autism have low adaptive-functioning scores, the new study shows, and they are more likely than children with non-profound autism to have self-injurious behaviors and seizures. Having a more complete picture of who these children are and what traits they have will help researchers and clinicians provide better recommendations for their well-being, she says.
But the study is the first of its kind and needs to be replicated, Lord adds, noting methodological challenges such as incomplete records. “The numbers could be high — or low,” she says, because the researchers had to make inferences on data that was not systematically collected.
Moving forward, it will also be important to gain a better understanding of autism in the non-white population, says Santhosh Girirajan, associate professor of genomics at Pennsylvania State University in University Park, who was not involved in the work.
“What we use in white populations might not be applicable in non-white populations,” Girirajansays. Addressing that might take redefining some of the assessments to account for cultural and familial differences, he says — and may ultimately help the field better understand autism as a whole.
Cite this article: https://doi.org/10.53053/TCER1579
A questionable study linked epidurals to autism. Then what?
Scientific reflection: A seemingly simple epidemiology paper prompted researchers to consider what publishing is for.
The spread of misinformation — and the way fear can burn through a landscape — was forefront in Tor-Arne Hegvik’s mind when, in October 2020, he opened up his web browser and found a new autism paper in JAMA Pediatrics. Hegvik is a gynecologist and researcher at the University of Bergen in Norway, and the study, co-led by biostatistician Anny Xiang of Kaiser Permanente Southern California (KPSC), made what appeared to be an improbable claim: The epidural analgesia given during labor is associated with increased chances of having a child with autism.
Hegvik had never wondered whether epidurals could contribute to autism, and he didn’t think anyone else had seriously considered it either. He assumed the association detailed in the paper was due to confounders — unaccounted-for factors that skew a result. Plus, he had clinical duties to attend to and patients to see. He tried to put it out of his mind.
But the paper continued to plague him. It reminded him of Andrew Wakefield’s infamous fraudulent statement that vaccines cause autism: Though the link was easy to disprove, it was exceedingly difficult to quash in the public consciousness. The epidural paper was not exactly that — Hegvik could see it was honest science — but the potential for harm felt similar. The decision to get an epidural requires clear, straightforward information. The Xiang paper, he worried, would muddy the waters. He couldn’t turn away. So he emailed some of his colleagues and asked: Would anyone be interested in trying to refute this?
Other worried researchers were also talking about the paper, united by the thought that the study’s implied conclusion — that epidurals cause autism — could become a Wakefield-esque fiasco. It is difficult to know exactly what fears will catch fire in the public consciousness, but if it was even a possibility here, they wanted to do something about it.
The first person at JAMA Pediatrics to read the epidural paper was the journal’s chief editor, Dimitri Christakis. Christakis rejects on sight about three-quarters of the papers he receives. The rest go to his team of associate editors, some then go on to peer review, and in the end just 6 percent of submissions are accepted. So it’s safe to say JAMA Pediatrics is a discerning publication. Today, Christakis doesn’t remember anything particularly noteworthy about Xiang’s paper or its peer-review process. (The journal does not make its reviews public.)
What he saw was a study showing that among nearly 148,000 babies born in a KPSC hospital between 2008 and 2015, children whose mothers had an epidural while giving birth were 37 percent more likely to be autistic than those whose mothers did not have one; the longer the epidural exposure, the higher the chance of autism. Christakis felt there were some weaknesses in the data, but the researchers acknowledged them and were cautious in their conclusions. The methodology was not flawed on its face. He felt the question Xiang had introduced deserved an answer.
Christakis’ decision to publish revolved largely around the role of scientific publishing. Part of the job of a journal, he told me, is to present ideas for its community to evaluate. He could find no reason not to present Xiang’s. JAMA Pediatrics accepted the paper on 17 June 2020 and published it on 12 October.
If the Xiang paper presented an intriguing scientific idea, it did not appear to be one the research community had previously cared much about. According to PubMed, before 2020 just one study had ever specifically looked at epidurals and autism together — a 2004 Australian paper that found a small association in about 2,000 people.
“I thought, when it first came out, ‘Oh my goodness, this is just going to permeate every discussion I have for the rest of my career.’” Daniel McIsaac
In their paper, Xiang and her colleagues were careful not to state that epidurals might cause autism. They had simply observed an association and noted that it should be viewed “with caution” and “cannot be interpreted as a demonstration of a causal link.”
But Hegvik thought the cautioning statements did not go far enough.
“When you read the article, they never directly claim that epidurals might cause autism,” Hegvik said. “But it’s like, everywhere you read between the lines, that’s basically what they’re writing.”
Daniel McIsaac, an anesthesiologist at Ottawa Hospital and associate professor of anesthesiology at the University of Ottawa in Canada, felt much the same after reading the Xiang paper. “I thought, when it first came out, ‘Oh my goodness, this is just going to permeate every discussion I have for the rest of my career,’” he said.
McIsaac, like many others, was concerned that the study failed to account for factors that could make a person more likely to both use an epidural and give birth to an autistic child. Xiang and her colleagues, for example, did not control for the mother’s own psychiatric conditions, even though such conditions in parents are widely known to be linked to autism in children. Xiang and her team also excluded women who had received cesarean sections, which often occur because of complications with labor.
What’s more, it’s hard to see how epidurals — which come at the end of a pregnancy and generally last just a few hours — could lead to autism, a condition thought to originate in the earliest stages of fetal development. Because of this, McIsaac couldn’t understand why the research was even done. Typically, to justify doing a major epidemiological study like this one, a researcher needs good reason to think there’s something to find. “Just because you have data,” McIsaac said, “is never the right reason to do a study.”
Beyond citing some preliminary research in people, Xiang and her team also looked at a 1998 study comparing 11 infant rhesus monkeys born to mothers that had received a dose of bupivacaine (one of the drugs in a standard epidural) with eight control rhesus infants. The study showed that “standard clinical doses” of anesthetic drugs can “alter normal behavioral development,” according to Xiang’s paper. But that 1998 study concluded that even though the time course of the exposed rhesus infants’ development was shifted, the drug “does not cause neonatal abnormalities or specific cognitive deficits,” the researchers wrote.
Alexander Butwick, professor of anesthesiology at Stanford University in California, found the rhesus monkey data referenced in Xiang’s paper to be “pretty weak,” he told me. He and a colleague commented on the JAMA Pediatrics website that the dose used in the animal study wasn’t comparable to the one used in the delivery ward and called the researchers’ interpretations of relevant studies in people “at best misleading and at worst erroneous.”
Butwick set out to repeat the Xiang study with fresh data, and to do it quickly. “We really felt like we had a responsibility here to do not just the work but also respond in a timely manner,” Butwick said. “We were worried that the longer this was out there, the more people may feel like there’s a genuine cause-and-effect issue going on.”
He called epidemiologist Elizabeth Wall-Wieler, then assistant professor of community health sciences at the University of Manitoba in Canada (she now works in California), who had access to a dataset that linked clinical data from hospital visits to parent socioeconomic information and long-term outcomes for the child. Butwick and Wall-Wieler pulled numbers on 123,175 babies born in Manitoba from 2005 through 2016, adjusted for more than 30 factors — including maternal anxiety and depression — and found that epidurals were not associated with autism. That finding stood in a secondary analysis of siblings born to the same mother.
The paper was published 19 April 2021, also in JAMA Pediatrics. It was the first time the journal had published conflicting results on the same topic within 12 months — such a rare occurrence that Christakis pointed it out in an editor’s note published the same day.
Still, the papers around epidurals and autism kept coming. JAMA published two on the same day, in late September 2021. One, which looked at nearly 400,000 births in British Columbia, Canada, found a small association, though the authors ascribed it to “residual confounding.” The other, in nearly half a million children from a Danish registry, found no link at all. In a commentary accompanying the two papers, Cynthia Wong, chair of the Department of Anesthesia at the University of Iowa, wrote that “current evidence does not justify” considering the chances of autism when making decisions about epidurals.
In December 2021, the British Journal of Anesthesia published yet another null result, this time in almost 625,000 children born in Denmark. It was closely followed by a commentary from Wong and Butwick in the same journal, asserting “no meaningful association” between epidurals and autism. The case, they argued, was closed.
But four months later, JAMA Network Open published a study involving more than 650,000 mother-child pairs in Ontario, Canada, that found a small link between epidurals and autism — though the research team, which included McIsaac, noted the finding “must be interpreted with caution.” There were two meta-analyses, both of which found little reason to continue investigating the question. In fact, in the two and a half years since Xiang’s paper came out, there have been at least 28 papers addressing the purported connection. If the research community had not been interested in a link between autism and epidurals before Xiang’s study, it certainly was now. (Xiang declined to be interviewed by phone for this story, but in an email sent via a publicist affiliated with Kaiser Permanente, she repeated that her paper had only noted an association and added that she and her team welcomed additional studies. Xiang also stressed the benefits of epidurals for mothers and noted that there is not enough evidence to recommend against them.)
There was one more paper coming. Amir Sariaslan, a psychiatric epidemiologist at the University of Oxford in the U.K., was on the receiving end of Hegvik’s October 2020 email about Xiang’s study. He had never studied epidurals and had limited experience studying autism, but he had worked with Hegvik before and, crucially, could tap national registry data from Finland and Sweden, which contained information on more than 3.5 million births. Hegvik had access to data from another million births in Norway, and together they pulled together a game-changing cohort: 4.5 million people born across 28 years, with more than 1 million of them delivered using an epidural.
It took two years to finish the study; the findings were published online in the American Journal of Obstetrics and Gynecology last August. In a crude analysis, Sariaslan and his team found that children exposed to epidurals were 12 percent more likely to be autistic and 20 percent more likely to have attention-deficit/hyperactivity disorder than their unexposed counterparts.
Other studies had made initial steps beyond these preliminary associations. But because of the size of the cohort, Sariaslan had the power to do a new kind of analysis. He and his team pared their sample down to include only full siblings — other studies had confirmed just a shared mother. They then pulled just those siblings who differed both in their exposure to epidurals and whether or not they had autism or ADHD.
That specific group was about 2 percent of the original 4.5 million. But it was still 94,000 people. That was sufficient to find that people with either condition were no more likely than their siblings without a neurodevelopmental condition to have been exposed to an epidural.
In other words, the association between autism and epidurals completely disappeared.
“I personally think we’re done with this,” Wong said after Sariaslan’s study came out. There would be nothing to gain from mining more databases or a larger dataset. “There’s no place to go.”
The point of scientific publishing is to go “wherever science leads,” Christakis told me. Much of the pushback after the Xiang paper was published, he said, was by people worried that “this is going to panic women” about epidurals. “But that’s not a reason to not publish science. It’s just not.”
Science works only when researchers are free to publish their findings, regardless of what societal structures they may upend or whom they might upset. That march toward truth relies on the free flow of information. But the human brain is not always so rational. When encountering a new concept, people tend to focus on and remember the parts that cause negative emotions, like fear and anger. When that happens, collective efforts to debunk new ideas can sometimes just reinforce them.
“We were worried that the longer this was out there, the more people may feel like there’s a genuine cause and effect issue going on.” Alexander Butwick
That could have happened with Xiang’s work. The paper alarmed not only scientists but also doctors, and on the initial day of publication, five U.S. medical societies representing more than 100,000 physicians posted a response saying the study “does not provide credible scientific evidence” for the association and urging women not to be fearful of epidurals. By the end of that month, the Royal College of Anaesthetists, the Royal Australian and New Zealand College of Obstetricians and Gynaecologists and the Canadian Anesthesiologists’ Society had also all pushed back against the paper’s findings.
Their intention was much the same as Hegvik’s: to quickly refute what they saw as a potentially harmful conclusion in a paper based on science that could be challenged. But Dominique Brossard, an expert in the communication of science and risk at the University of Wisconsin-Madison, told me that rushing out a press release was, in her mind, exactly what not to do. The collective statement from physicians on the day of the publication, and those in the days that followed, could have stirred up a long-lasting media buzz — the kind that leaves the public recalling a shadowy link between epidurals and autism, and not much else.
Yet it did not. As far as anyone could tell me, the sweeping fear over epidurals hasn’t materialized in the general population. No one could cite more than a handful of instances from the past three years of a pregnant person asking about the link between autism and epidurals; most said they had never been asked about it. Searches for the topic turned up little on social media. It’s possible this is because the press was otherwise occupied in October 2020: It was furiously covering the global pandemic, and the United States was a month away from a contentious presidential election. Major national outlets such as The New York Times, The Washington Post and The Los Angeles Times, as well as popular science news sites such as Scientific American and New Scientist, did not cover Xiang’s study. (Spectrum ran a story the day after the study came out.)
That’s one theory. But Brossard has another. And that is that there was no organized movement eagerly waiting to pounce on new data about epidurals, no group that could use it to further a specific viewpoint. There is no anti-epidural lobbying group, for instance, and there is no epidural-alternative product to sell. If there had been people seeking to amplify Xiang’s study for personal gain, maybe it would have caught fire in the public consciousness.
Instead, though, the issue fizzled. That just left the scientists, gathering their evidence, publishing the story it told.
Cite this article: https://doi.org/10.53053/KXEV1638
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Iván en el club de rugby
La familia Demirci
Iván y sus amigos
