DEREK

Derek Paravicini

Pianist Derek Paravicini understands music systematically. Once a child prodigy, he’s matured into a creative musician, able to reimagine songs in ways few can.

Why you should listen

Derek Paravicini weighed half a kilogram when he was born, prematurely at just 25 weeks. Growing up blind and with severe autism, Paravicini had trouble communicating, but was fascinated by sound. He began teaching himself how to play the piano and, by 4-years-old, had taught himself an incredible catalogue of songs that he played with unusual technique. Soon, Paravicini began studying with Adam Ockelford, a teacher at the Linden Lodge School for the Blind in London, who saw in him the marks of a highly inventive musician. Paravicini gave his first concert at age 7 and, two years later, played the Barbican Hall.

Now in his thirties, Paravicini has continued to grow as a performer, with the ability to reimagine complex pieces of music even after only hearing them once. He was featured in the series Extraordinary People in the United Kingdom and, in the United States, on Stan Lee’s Superhumans, which verified his musical ability and confirmed his savantism. Paravicini has also worked with composer Matthew King. The two have played improvised pieces on BBC Radio and collaborated on Blue, the first concerto ever composed for someone with learning impairment.

Publicado en AUTISMO, NOTICIAS | 4 comentarios

EL PILOTO AUTISTA

Trundley: el piloto autista que gana y derriba prejuicios

Con 19 años debutó venciendo en el BMW 116 Trophy con el coche del Team BRIT, equipo creado por exsoldados heridos que ayuda a pilotos con discapacidad.

Bobby Trundley con su trofeo de ganador y su coche.
Team BRIT.

“Mi autismo no me detiene, me hace más fuerte. Es cómo vivo, quién soy y lo que me impulsa a ser lo mejor que puedo ser”.

Bobby Trundley, nacido en Wokinham hace 19 años, lanza una proclama de vida que acompaña con un lema que lo define: “Soy autista y me encanta correr”. 

Este joven que sueña con ser piloto profesional atesora muchos éxitos en el kárting y premios relevantes como el ‘Anna Kennedy OBE Autism Hero’ y el ‘Premio a la Excelencia en el Deporte en el Mundial de Autismo 2017’, donde representaba a Inglaterra.

Bobby Trundley, con muchos de sus trofeos de karts.
Bobby Trundley, con muchos de sus trofeos de karts.

Estudiante de la escuela de educación superior agrícola de Berkshire corre desde este año en el Team BRIT, equipo formado por exsoldados británicos heridos y fundado por el exmilitar e ingeniero Dave Player, que permite a personas con discapacidad competir en igualdad y cuyo objetivo son las 24 Horas de Le Mans.

Ha debutado en la cita inaugural de la copa monomarca Gaz Shocks BMW 116 Trophy, certamen organizado por el prestigioso ‘750 Motor Club’ cuyos miembros incluyen a ingenieros míticos de F1 como Colin Chapman, Derek Bennett o Gordon Murray. ¿El resultado? Bobby ganó la carrera. “He soportado intimidación e incredulidad de muchas personas que decían que no valdría para nada. Cuando conduzco todo encaja y desaparece la discapacidad”, dice Trundley.

Publicado en AUTISMO, NOTICIAS | Deja un comentario

AUTISM AND FLIGHT

WHAT THE FAA HAS TO SAY ABOUT AUTISTIC AIRMEN/WOMEN

Autism has a lot of hallmark stereotypes — chiefly, the ability to hyper-focus on special interests.

As children, an obsession with dinosaurs or trains is acceptable; however, the hyper-focus eventually puts us at odds socially. As we get older, namely as adults, our special interests and the spaces generated by our peers to enjoy those interests can be just as exclusive of us as they can be inclusive.

So, what about those special few of us who are aviation nerds? What if you were autistic and wanted to go beyond being a “back-seater”?

What if you actually wanted to fly?

THE STANDARD PROCESS FOR STUDENT AIRMEN/WOMEN

Acquiring your student pilot’s license is a fairly straight-forward process:

  • The applicant must check out with a certified Air Medical Examiner to obtain either a First or Second Class Medical Certificate.
  • The applicant then takes their identification, along with their medical certificate, birth certificate, and other required paperwork into their instructor, who then helps the student fill out their application for a student pilot’s license.
  • The instructor will ask general questions, regarding background, and look over the medical certificate, and make sure that any restrictions are explained in detail.

AUTISTIC AIRMEN/WOMEN

Here is where the bias comes in. If you look up on google, something along the lines of “‘x’ disease” or “‘y’ disorder”, then add FAA rules, you should find the specific things that the FAA deem “unsafe to fly/do not fly”. For example, any Attention Deficit Disorders, or Anxiety Disorders. If you’re under the influence of certain psychotropic medications, is another general rule listed on there.

But if you look for autism, specifically, you won’t find it there. Instead, you’re taken to a special bulletin, outlining autism spectrum disorder in detail. I’ll link to the special bulletin here, for those that wish to read it. Otherwise, here’s some general bullet points.

This case report was written by Colonel Elizabeth R. Anderson-Doze, board certified in family medicine, and is an Aerospace Medicine Resident at Wright-Patterson AFB, Ohio.

This report outlines general hallmarks of autism, aka, stereotypes, and give one particular case study.

Overall synopsis: Asperger’s/Type 1 ASD can be considered by AMEs on a case by case basis, so long as they can provide a familiar, outside psychiatrist or medical doctor’s approval and recommendation.

The FAA, and AMEs are looking for “stabilization in treatment”. No history of violent meltdowns, no hospitalizations, things like that.

Here’s the problem that THIS student airman has with this decision: what if you’ve never received “treatment”, and decide to self-disclose? Because it sounds like you’d have basically shot yourself in the foot, here.

And, what about Autistics that AREN’T “type 1”, but still show the necessary skills and “stabilization” in order to be considered to fly?

Why can’t any of the other Neurodivergent disorders fly, even if they’re still considered “stable in treatment” by their physicians?

I’ve sent out some emails for comment, but I haven’t heard back yet. In the meantime, these questions are things that I’m definitely wanting answers to.

AN UNCERTAIN FUTURE

The biggest problem with this exclusion and bias isn’t simply getting the plastic card and the privileges that come with having a pilot’s license.

Ask yourself this question: how many professional pilots with disabilities have you seen flying these skies deemed “friendly” by our airlines?

In WWII and beyond, pilots could regain flight status with the use of prosthetics. How many do you see on American Airlines? Delta? United?

How many pilots do you see who are representative of you? Your skin color? Your ethnicity? Your disability?

This issue is far more important than just us. But, like all movements for change, those who are disabled seem to be the last to see that change.

But either way, this author dissents to the opinion that psychiatric stability is the only thing keeping most back from their dreams of flight. Because if that were the case, honestly, then it should apply to ALL neurodivergence and disabilities, not just autism. It should apply unilaterally as standards for all people.

Combat vets with PTSD can’t become pilots? No matter how “stable” they are? What about someone who has been diagnosed with acute MDD (major depressive disorder), AFTER an otherwise-perfect performance record and umpteen years of experience? Are they not supposed to fly anymore?

“Psychiatric stability” covers more than just autism. It is not exclusive to just autism.

If you have the aptitude, if you have the applied skill set necessary, no matter what the industry, shouldn’t you be allowed to become a professional?

As we continue to push for inclusion inside of employment, I pose this final question to our allies: would you be any less afraid of flying than your current comfort level if the pilot in command had a disability?

I honestly would not. Because I trust the schools and the rules put in place that make up the eligibility requirements that ALL pilots must meet. I’m going through it. And I know my brothers and sister pilots in training are as well. If I’m not treated differently by them, why should I be treated differently by the industry at large?

Publicado en AUTISMO, NOTICIAS | 23 comentarios

HAYDEN ES FLYING

Hayden is flying around Australia to show others living with autism that the sky’s the limit

A young man and his dog pose in front of a light aircraft in regional WA.
Hayden is set to solo circumnavigate regional Australia in September.(Supplied: Hayden McDonald)

Hayden McDonald didn’t always feel like the world was built for him. But from thousands of feet above, life makes perfect sense.

“It’s a disconnect from the world, it’s my escape,” he says.

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“Being on the autistic spectrum, life is a little bit difficult, so it’s a way for me to be myself without anyone trying to tell me who I am.”

When Hayden was just a boy, his grandfather would take him flying across the Nullarbor and Flinders Ranges, introducing him to a world beyond one he’d ever known.

It inspired a love for aviation that has seen him travel thousands of kilometres across the rocky outcrops and salt lakes of WA’s Goldfields-Esperance region on his own.

There’s something about being up there that gives you a different perspective, he says. You don’t “hear all the bad stuff in the world”.

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But far from just a reprieve from the day-to-day, flying has come to represent something more.

After gaining his recreational pilot’s certificate at 17, Hayden began the process of applying to become a professional pilot on his final day of high school.

Before long, an email arrived in his inbox: intention to refuse medical.

“I quote: ‘This is because your autism spectrum disorder represents unacceptable risk to aeronautical navigation,'” he says.

“Can you imagine how it felt to be labelled like that?”

Faced with no opportunities, Hayden decided to make his own, sparking a dream to fly solo around Australia to show others that the sky’s the limit.

‘It’s a reminder of why I fly’

Renowned for its pristine beaches and undulating bays, the Esperance region is a sight to behold.

There’s a waypoint Hayden likes to go when he’s flying north to Kalgoorlie; the country around Norseman “is gorgeous on a summer’s day”.

“The red dots, the whites in salt lakes, the blue sky,” he says. “It’s a reminder of why I fly.”

With one of the lowest population densities to be found anywhere, the 21-year-old didn’t see a lot of people like him growing up in Esperance.

Sometimes, it felt as thought people didn’t really know where Hayden fit into the puzzle. Over time, neither did he.

But in the pilot’s seat of a Jabiru J-120, he found his purpose and potential in more ways than one.

While Western Australia’s south coast is known around the world for its white sands, the fineness of the beach can cause him to have sensory overload. 

Soaring above, Hayden is able to experience it in all its glory.

“That coastline between Bremer Bay and Hopetoun is absolutely beautiful,” he says. “It’s just rugged terrain.”

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Hayden currently holds a Recreational Pilot Certificate,  which requires the same medical standards as driving a car, and allows him to fly a one or two-seat recreational plane. 

To obtain a pilot’s licence, though — a prerequisite to flying privately — he needs to obtain a Class 2 medical certificate, which entails more thorough testing. 

The Civil Aviation and Safety Authority, which is unable to comment on individual cases, is responsible for overseeing pilot licences in Australia.

It does not have specific medical guidelines regarding autism, but says that “associated information can be found under our guidelines for ADHD”. 

According to Hayden, he had “no problem” providing the necessary medical documentation or undertaking a physical. Rather, he believes issues started to arise during the psychiatric component of the examination. 

Knowing his dream would hinge on a passing mark, he says, he found himself increasingly uncomfortable with the process and unable to follow some of the directions given to him, something he attributes to a “neurotypical approach” to testing. 

An aerial shot from a recreational plane shows salt lakes in WA.
Hayden’s love for aviation has seen him travel thousands of kilometres across the rocky outcrops and salt lakes of WA’s Goldfields-Esperance region on his own.(Supplied: Hayden McDonald)

“It pretty much deals with your personal skills and other stuff, but the problem with that is it’s based on your performance on the day,” he says. 

“I know I’m very different when I fly. You could say I change masks when I fly because it’s just me. 

“But having people judge me when it’s not on my ability [to fly], that’s where I don’t feel comfortable.” 

Navigating a ‘neurotypical’ system

In a statement, CASA said that “having autism is not an automatic exclusion to gaining a pilot’s licence and all cases are reviewed accordingly”. 

“All medical decisions made by CASA can be reconsidered on request by the applicant and we can also organise a meeting with our clinical case conference panel,” it added.

A young man with a high vis vest walks on an airfrield next to his dog.
Hayden wants people to understand autism better.(Supplied: Hayden McDonald)

In Hayden’s case, having already spent “hundreds of hundreds of dollars” to obtain the necessary medical documentation and testing without any guarantee of success, he decided not to appeal the outcome. 

Instead, he wants to draw attention to the nuances of autism and how it presents, to foster a greater understanding of the condition, both within the aviation sector and wider society. 

It’s something “you live with your whole life”, he says — there is no remission or cure, or box you can tick to say it’s no longer there.

He doesn’t want CASA to compromise on safety, but he hopes it will develop a broader approach to neurodiverse applicants, to ensure they are assessed “on their ability, not their disability”. 

“That is exactly what I’m talking about with the neurotypical approach, not understanding the whole presentation,” he says. 

“If a pilot can actually fly to the standard that [CASA] sets for Recreational Aviation Australia, and has instructors and pilots backing them up, vouching for them being able to fly solo with no troubles whatsoever, why are they being declined?” 

‘We’re going to leave people behind’

After receiving the intention to refuse medical notice, Hayden did what he knew best: he took to the skies.

Armed with a GoPro, he started Wings Without Barriers, a vlog dedicated to showing life and aviation on the spectrum.

A GoPro filming a flight route on an iPad.
Hayden started Wings Without Barriers, a vlog dedicated to showing life and aviation on the spectrum.(Instagram: Wings Without Barriers)

“There are two missions — one, to create understanding and acceptance about autism through education,” he says.

“And two, to change the medical process without compromising aeronautical safety.”

In his quest to challenge “assumptions about capability”, the 21-year-old is set to solo circumnavigate regional Australia in September.

For Hayden, the journey is about more than a medical certificate; it’s about being seen as a person, not “just a piece of paper”.

Over six weeks, he plans to visit rural and remote communities across the country, where he’ll speak to schools about life on the spectrum, and build an informal network of young regional pilots with autism.

“Autism is not taught in the school curriculum… and businesses don’t really know how to approach [neurodiverse] people,” he says.

“I want to make a more neurodiverse-friendly Australia,  because otherwise we’re going to leave people behind.”

Braving a variety of weather and other conditions — including the Northern Australia wet season, which renders many outback runways “pretty much unusable” — the task at hand is no easy feat.

For his mum, Fleur, it’s a daunting prospect. In the back of her mind, there’s the lingering question: “What if something goes wrong?”

A photo from inside the cockpit of a light aircraft that is being flown over WA.
Flying has given Hayden a sense of freedom.(YouTube: Wings Without Barriers)

But having seen Hayden in action, and knowing he has the support of friends and family along the way, she doesn’t mince words: “You can’t stop his dreams.”

Publicado en AUTISMO, NOTICIAS | 12 comentarios

Un pianista con autismo

Un pianista con autismo hace historia al ser el primer titulado Superior en Música con esta discapacidad

La primera persona con trastorno del espectro autista que logra la titulación más exigente en la carrera de música, en la especialidad de piano, se llama Egor Chulkov.

Lleva 23 años afincado en Alicante, aunque nació en Rusia. Su madre, Larisa, escuhó allí a los médicos decir que su hijo “nunca podría andar ni hablar” y que lo mejor “era dejarlo encerrado en un orfanato”, por lo que abandonó el país con su bebé rumbo a España.

La realidad que vivía Larisa en su Rusia natal era bien distinta a la actual. “Egor desde bebé mostró una sensibilidad especial para la música”, recuerda en una entrevista a Servimedia.

“Desde los ocho o nueve meses ya tocaba música y componía a su manera, incluso antes de hablar en un pequeño teclado que tenía”. Cuenta su madre que el pequeño pianista no aceptaba ningún juguete que no fuera musical. “Estaba predestinado para ir a estudiar al Conservatorio”.

Allí Egor se formó musicalmente durante diez años hasta lograr el título Profesional de Música en la Especialidad de Piano.

Los últimos cuatro años, que conducen a la obtención del título Superior de Música, los ha cursado en la Escuela Superior de Música de Alto Rendimiento (Esmar), cuyo coordinador de estudios y también exprofesor del joven, Juan Pablo Valero, confiesa a Servimedia que Chulkov es “un ejemplo perseverancia, éxito y superación personal” porque “rompe un techo de cristal muy importante para las personas con este tipo discapacidad”.

En ocasiones, el joven ha contado con la ayuda de profesores de apoyo para explicarle algunos conceptos teóricos. “Sin embargo, cuando se trata de interpretar música tiene ‘oído absoluto’, una capacidad que le identificaron desde una edad muy temprana relacionada con la memoria auditiva”, indica Valero. Q

uienes la poseen pueden identificar las notas interpretadas o reproducir una obra en un instrumento sin necesidad de leerla en una partitura, así como memorizarla escuchándola tan sólo una vez. “Egor se sabe de memoria las ocho sinfonías del compositor Antón Bruckner”, apunta con cierto orgullo su exprofesor. “Cuando era más pequeño le bastaba con echar un vistazo a un libro y era capaz de memorizar cada palabra”, añade su madre.

El joven tiene una discapacidad reconocida del 65% con problemas de movilidad reducida que en ningún ha caso ha frenado su carrera meteorítica en el ámbito de sus estudios musicales. “Resulta paradójico ver que no sabe atarse los cordones ni comer solo con la cuchara y luego es capaz de tocar el piano de un modo brillante”, señala Larisa.

Publicado en AUTISMO, NOTICIAS | 1 comentario

April 2nd, Autism Awareness Day

Publicado en AUTISMO, DEFINICIONES | 7 comentarios

April 2nd, Autism Awareness Day

April 2nd is World Autism Day.  This day aims to put a spotlight on hurdles that individuals with Autism and others living with Autism face every day.  Although, I may be a therapist at Bayridge, I am also a parent of a child with Special Needs.  Parents, I understand, not because of my training in my field, but because I live those hurdles daily- along with you. I understand the exhaustion of having to constantly think outside the box so our children can cope in new or difficult environments.  I understand the strength needed to advocate for services or tools to have their needs met.  I know the struggles associated with lack of funding for respite and the lack of available respite. I know the comfort of a support circle of people that truly understand the hurdles our families endure.

If you know me- then you would know I am a person who believes in inclusion, acceptance and kindness.  I have spent most of my life educating people to see an individual’s ability and not their disability. I host events around Ontario that promote inclusion and create social settings for many children and adults living with special needs. I often don’t see the daily “Challenges” because they have become so routine.

But then a global pandemic hits and our “routine” becomes non-existent and unbalanced.

Like all parents, we were left to accept our unprecedented “norm” without any time to plan.  Except, it isn’t just school and work commitments that parents with special needs children need to figure out.  For many of us, it also includes cancelled therapies and specialists, no respite and trying to explain the significance of the current situation to a child or adult that has no comprehension.  Schooling our children does not include the supports they have at school with educational assistants or special tools needed to complete the tasks.

I see you.  I am you.  I am feeling the same stress. I am feeling exhausted.  I am worried about how this is going to affect my child, our family – and honestly my balance when we return to our old routines.

First, I want to tell you that your feelings are incredibly valid.  Don’t discount them. Acknowledging how you are feeling will help you cope.  Many parents sacrifice self-care due to the constant needs of our children.  I implore you to make time for you.  Take a bath, go for a walk, read a book.  Breath.

If I may, here are some wellness tips that may help bring more stability and calm to your day.

1. Stick to a routine. Create a schedule around going to bed and waking up at the same time every day.  Get dressed every morning. In my house, I schedule in time to work, homeschool and clean so that I can just check things off during the day.  Don’t worry if your schedule gets changed occasionally- that’s normal!  For example, some days, I have to go pick up my groceries.  Other days, the weather doesn’t allow for our daily walks!  Lower your expectations and just go with the flow!  You are not the teacher, EA, PSW, Audiologist, Doctor, Respite worker, Speech therapist etc.  You are the parent.  Create a routine that isn’t overwhelming but helps create balance in your child’s life so they can predict how their days will look which will hopefully lessen their stress and inability to cope.

2. Try and get some fresh air at least once a day. This could mean just sitting outside or opening windows!

3. Schedule in Self-care every day! This could be many things so I will list a few examples.  Take a bath, read a book, prayer, journaling, listening to music, cooking, knitting, woodworking, singing or painting.  For some, just doing your hair and makeup might make your day brighter!

4. Write gratitude’s each day. Find something good in all your days to help with distracting us from the negative thoughts.  This could be writing something amazing you accomplished, it could be about a heartwarming story you saw or read.  You could be thankful for something that you were blessed with.

5. Reach out for help. Find your village of support.  Use technology to video or call your family and friends often.  One of my co-workers said instead of calling it social distancing we should call it physical distancing.  I love this concept.   We may not be able to hug or visit our friends but there are still ways we can remain social with them.  There are many references and easy to use programs  available such as Zoom or Facetime to connect with loved ones.

6. Remember, that this is temporary. The present moment may seem overwhelming and terrifying.  Remind yourselves that this will pass.  One day, we will return to our routines and have access to all our supports again.

Take it one day at a time. Don’t judge yourself, you are doing the best you can and that is more than enough.  You are more than enough.

Sending you strength, love and courage.

Publicado en AUTISMO, NOTICIAS | 5 comentarios

All about GAIN (Group for Autism, Insurance, Investment and Neurodiversity) corporate membership

s your business in insurance, investment or financial services? Do you want to become more neuro-inclusive and support your neurodiverse colleagues and new entrants better. Find out more at https://gaintogether.org/

Publicado en AUTISMO, NOTICIAS | 111 comentarios

UN chief calls for greater investment to help countries address autism

United Nations, March 2012 — The annual observance of World Autism Awareness Day should spur global action to combat the “unacceptable” discrimination, abuse and isolation that people with the disorder and their loved ones face, according to Secretary-General Ban Ki-moon. “Autism is not limited to a single region or a country; it is a worldwide challenge that requires global action,” states Mr. Ban’s message for the Day, observed annually on 2 April. “People with autism are equal citizens who should enjoy all human rights and fundamental freedoms.”

Publicado en AUTISMO, DIVULGACIÓN, NOTICIAS | 10 comentarios

2 APRIL WORLD AUTISM. AWARENESS DAY

Publicado en autismo | 15 comentarios

DIA MUNDIAL DE CONCIENCIACION DEL AUTISMO

Publicado en autismo | Deja un comentario

MITOS DEL AUTISMO

10 Mitos y controversias sobre el Autismo y los TEA – YouTube

El Autismo no es un trastorno ni una enfermedad, es una condición. La principal causa del autismo son las vacunas.

El gluten es un factor muy importante en el desarrollo del autismo. La homeopatía puede mejorar mucho e incluso curar el autismo. No. No te preocupes.

No me he vuelto loco ni he perdido la cabeza. Solo he empezado a soltar, una detrás de otra, algunas de las mayores estupideces que he oído sobre el autismo a lo largo de mi vida.

Si por algún extraño motivo, en algún momento de duda, preocupación, agobio, desesperación o debilidad, has llegado a dudar por un segundo si alguna de las historias de este tipo que circulan por internet, y por muchos grupos de Whatsapp, tienen algo de cierto, déjame que te lo aclare negro sobre blanco y de una vez por todas. NO. No, no, y 1000 veces no.

Publicado en AUTISMO, INVESTIGACION, NOTICIAS | 1 comentario

CONTACTO VISUAL Y TERAPIA

Mario fue diagnosticado con autismo cuando tenía 2 años y ocho meses. Empezamos a realizar en casa terapia intensiva y diaria guiados al principio por la psicopedagoga Carmen Gándara y después por la psicóloga Raquel Ayuda, del equipo Deletrea. Mario al principio, con 2 años y 8 meses rehuía el contacto visual y la interacción era difícil y solo a través de intereses muy restringidos. Poco a poco fue aumentando su contacto visual y su reconexión con el mundo. También empezó a interactuar y a disfrutar. Todo a través de un trabajo intensivo basado en los métodos DENVER y TEACCH. Muy a menudo me preguntan cómo trabajé con Mario al principio y cómo hemos logrado que vaya avanzando. Lo primero y más importante, aunque el pozo y la soledad en la que caímos fue muy grande, no dejamos que ese dolor tan intenso nos frenara en las ganas de aprender, el deseo de llegar a él y el ímpetu por ganar cada día el pulso a las dificultades que el autismo le pone, nos pone, en nuestras vidas. Lo segundo, constancia, perseverancia, energía y sonrisa. Son los elementos base y críticos para sobrevivir y mirar con ilusión, incluso con alegría, cada mañana. Todos los niños con autismo evolucionan de forma diferente, unos más rápido, otros más lento. Esta es la evolución de Mario, solo suya, sin compararla con la de nadie. Porque los padres de niños con autismo sabemos que comparar es sufrir. Aquí están los enlaces a varios vídeos desde los primeros meses del diagnóstico, cuando recuperar el contacto ocular era primordial, urgente, básico y el primer paso para lograr la mejor evolución posible dentro de sus posibilidades, hasta los 6 años. Espero que os sirvan. Todos los vídeos juntos están en este enlace: http://laalegriamudademario.blogspot….

VIDEO FROM YOUTUBE

Publicado en AUTISMO, DIVULGACIÓN, INVESTIGACION | 29 comentarios

QUEMADURAS DE UN AUTISTA

Dos monitores, bajo sospecha por las quemaduras de segundo grado de un niño con autismo

El hospital dio parte al juzgado tras atender al menor, que sufrió una septicemia e ingresó en la UCI

La escuela Taiga de Barcelona. A la derecha, la mano de Marc tras las quemaduras de segundo grado

La escuela Taiga de Barcelona. A la derecha, la mano de Marc tras las quemaduras de segundo grado.

Marc tiene 8 años trastorno del espectro autista (TEA) y una discapacidad diagnosticada del 82 por ciento. No habla, pero sus padres, María del Mar Barco y Carles Aguilar, lo entienden con una sola mirada. Por ejemplo, cuando quiere agua.

Desde el pasado 25 de enero, Marc está ingresado en el Hospital Vall d’Hebron por quemaduras de segundo grado en su mano derecha, y sus progenitores se turnan para no dejarlo ni un minuto solo.

Le han realizado ya varios injertos de piel que le han extraído de ambos costados, por lo que entra y sale de la unidad de cuidados intensivos tras cada intervención. De hecho, sufrió también una septicemia, de la que ya se ha recuperado.

Fue aquella fecha, un jueves a la hora de comer, cuando su tutor y la subdirectora de su escuela, el centro de educación especial Taiga, lo llevaron al citado hospital de Barcelona. El parte médico reza: «Los cuidadores refieren que metió la mano debajo del grifo».

En aquella primera atención, le desinfectaron la mano, la vendaron y tras recetarle un antipirético y reposo, lo enviaron a casa. Pero en el domicilio familiar, el pequeño comenzó a tener náuseas, que desembocaron en vómitos y también somnolencia.

Angustiados, los progenitores decidieron volver al centro médico y, cuando los doctores retiraron el vendaje, comprobaron la gravedad de las lesiones. Tal fue el impacto para los facultativos que decidieron dar parte al juzgado, tal y como ocurre cuando creen que un paciente puede haber sido víctima de una agresión.

Publicado en AUTISMO, NOTICIAS | 24 comentarios

PSICOLOGO NOS CUENTA COMO MANEJAR LAS CRISIS Y RABIETAS EN LAS PERSONAS CON AUTISMO.

FUENTE : A LO ASPERGIANO EN YOUTUBE

Publicado en AUTISMO, DIVULGACIÓN | 170 comentarios

CAUSAS DEL AUTISMO

 las causas del autismo son desconocidas; aunque en muchos casos se sospecha que se debe a cambios o mutaciones en los genes, no todos los genes involucrados en el desarrollo de esta enfermedad han sido identificados. Las investigaciones científicas han relacionado la aparición del autismo en el niño con las siguientes causas:

  • Agentes genéticos como causa del autismo: se ha demostrado que en el trastorno autista existe una importante base genetica. En estudios clínicos desarrollados con mellizos, se ha observado que cuando se detecta el trastorno en uno de los hermanos, existe un alto porcentaje (en torno a un 90%)  de probabilidades de que el otro hermano también lo desarrolle. Si el estudio se ha llevado a cabo en el ámbito familiar, las estadísticas muestran que existe un 5% de probabilidades de aparición en el neonato en el caso de que tenga un hermano con el trastorno, que es una probabilidad bastante superior a la que tendría en el caso de que no existieran antecedentes documentados en su familia. Estos datos indican claramente una carga genética ligada al trastorno autista. Las investigaciones tienen por objeto determinar los genes involucrados en la aparición del trastorno, y ya han establecido la relación directa entre la inhibición del gen de la neuroligina NL1 y el desarrollo de autismo, aunque se sabe que hay más genes implicados. De hecho, se establece que deben estar presentes hasta 15-20 alteraciones geneticas a la vez para que se exprese de manera completa el autismo. Algunas teorías, incluso, tratan de relacionarlo con el síndrome del X frágil.
  • Agentes neurológicos como causa del autismo: se han constatado alteraciones neurológicas, principalmente en las áreas que coordinan el aprendizaje y la conducta, en aquellos pacientes diagnosticados de trastornos del espectro autista. Particularmente, la epilepsia está relacionada con el autismo, pues un tipo concreto, el síndrome de West, desarrolla autismo hasta en una quinta parte de los casos y viceversa. Algunas estructuras peculiares del cerebelo también podrían tener relación con el TEA.
  • Agentes bioquímicos como causa del autismo: se han podido determinar alteraciones en los niveles de ciertos neurotransmisores, principalmente serotonina y tirptófano.
  • Agentes infecciosos y ambientales como causa del autismo: determinadas infecciones (como el herpes genital, fiebre, …) o exposición a ciertas sustancias (como pesticidas agricolas) durante el embarazo pueden provocar malformaciones y alteraciones del desarrollo neuronal del feto que, en el momento del nacimiento, pueden manifestarse con diversas alteraciones como, por ejemplo, trastornos del espectro autista.
  • Otras posibles causas del autismo: se han estipulado otras razones, como las complicaciones obstétricas durante el parto, el abuso de drogas como la cocaina por parte de la mujer embarazada, o el uso de medicamentos antiepilépticos, aunque su base científica no está absolutamente demostrada.
Publicado en autismo | 16 comentarios

DONATIONS:

X el AUTISMO

Donations in the up corner

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Common autistic traits 

63 common autistic traits you never realised were signs of autism. Do you ever wonder if you might be autistic? What is autism anyway? It can be hard to define, but if you know enough autistic people there are some obvious patterns. How many of the common 63 autistic traits apply to you? Maybe you’ve had someone say to you, “How can someone so clever be so stupid?” or you feel like you’re either too much or not enough in certain areas. From scripting conversations to advanced or delayed childhood development, in this video, we’ll explore what it means to be autistic and what it can look like in different individuals.

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AUTISM WHAT HAS AND HASN´T CHANGE

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.”

Labor markets have cooled somewhat in recent weeks. This provides some relief from the top pressure for autism therapy providers — labor costs. On top of stagnant reimbursement rates, wage inflation drove many frontline clinicians out of autism therapy altogether and into less emotionally intensive work.

“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.

Publicado en AUTISMO, DEFINICIONES, DIVULGACIÓN | 16 comentarios

AUTISM CAN BE A GROWTH MARKET

if Investors Help It Scale

A morning briefing on what you need to know in the day ahead, including exclusive commentary from Barron’s and MarketWatch writers.I would also like to receive updates and special offers from Dow Jones and affiliates. I can unsubscribe at any time.I agree to the Privacy Policy and Cookie Policy.

The Disability Opportunity Fund, Autism Impact Fund, the Difference Fund, and Divergent Ventures are just a few funds committed to investing in the autism and intellectual- or developmental-disability space. Dreamstime

About the author: Dan Feshbach is the CEO and founder of Multiple, a charitable nonprofit dedicated to catalyzing innovation and supporting technologies for the autism community at scale.

When I was raising my son with autism in the 1990s, I searched far and wide for technologies and medical interventions that could help improve the quality of his life. At the time it was a desert. Expertise and resources were nearly nonexistent. As a lifelong entrepreneur, I decided to partner with academics, technologists, and passionate parents to create a digital learning solution to help my son and the staggering number of other kids like him. But I struggled for years to find the co-investors who understood the challenge and the opportunity. 

Today, this dynamic is beginning to change. Parent advocacy and billions of dollars of research have resulted in a better understanding of autism. Talented entrepreneurs, led by parents and siblings of individuals with autism, have leveraged their passion, expertise, and networks to create an emerging technology ecosystem. Advances in smart devices, virtual reality, artificial intelligence, big data, and videoconferencing have enabled a marketplace to grow around autism technology and other personalized interventions. Autism start-ups are now receiving millions of dollars in funding. Last year, the company I helped build all those years ago was acquired by a major private-equity investor. The global market for autism spectrum disorder treatments is projected to grow from $1.93 billion this year to $3.17 billion by 2029. 

Even so, the market is still in its infancy. It hasn’t yet reached anywhere near its full potential, nor the scale needed to help the millions of families living with autism. Currently one in 100 children around the world is diagnosed with autism. In the U.S., about one in 30 was diagnosed as of 2020—a 50% increase from 2017 and a dramatic rise from the one in 300 when my son was diagnosed. Solving so massive a challenge requires not only more funding but greater investment specifically in companies at their earliest stages. This is frequently where the greatest innovations take place, but where capital is most lacking.  

The good news is investors are, at last, recognizing that autism is a growth market. The bad news is much of that investment is flowing toward services that don’t scale, often overpromise, and frequently underdeliver. In many ways, the complexity of the autism market reflects the disorder itself. It is an immensely complex condition, consisting of countless overlying subtypes and a wide range of obstacles. It’s not autism we are all working to address, but many forms of autism. Even with our growing understanding of the condition, families remain haunted by four questions: What type of autism does my child have? Why can’t my child communicate? How can my child get a job? Who will care for my child after I pass?

New start-ups and companies are, at last, starting to find the answers. Innovations in diagnostics and big data are on the verge of allowing families to discover the condition earlier, with companies such as BioRosa working to develop a blood test and biomarker for autism. Floreo and other platforms are tapping the power of virtual reality to teach important communication and interpersonal skills, while start-ups like Daivergent and Mentra are linking individuals with autism to employers and providing them with support in the workplace. Impruvon Health is offering medication management devices and Advasys is creating tools to help identify sexual abuse. The nonprofit I founded has created a global database that now tracks over 500 technology and life-sciences companies within the autism and intellectual- or developmental-disability space. 

Meanwhile, autism and intellectual-disability impact investors are creating early-stage funds to support these kinds of young companies. The Disability Opportunity Fund, founded 13 years ago, has recently been joined by the Autism Impact Fund, and then by the Difference Fund, Divergent Ventures, K-Ventures, Enable Ventures, Neuvation, Arc Capital Development, and Moai Capital. These initiatives invest in start-ups that have met key private investor criteria and provide them with funding, mentoring, and a greater understanding of the market. 

For all the innovations that impact venture capital helps bring to market, however, there remains a fundamental disconnect surrounding the expectations and confidence these investors have in the ability of the earliest-stage companies to generate market-rate returns. There is a great need for better connecting philanthropic capital, which doesn’t require the same level of returns, to start-ups that have innovative ideas and products but lack the proof points to secure private investment. We must create better avenues to help high-potential, impactful solutions to move from their pre-revenue early stages and toward becoming viable contenders for venture capital.

Bringing these innovations to scale is no easy task. The autism community is often divided and conflicted. The market struggles with duplication of resources, incomplete data, limited collaboration, and a lack of real innovation. Debates and discussions surrounding treatments like applied behavior analysis therapy and concepts like neurodiversity are often polarizing. At the same time, our community can be insular, which stymies and discourages innovation. As a result, there are not enough entrepreneurs entering the space, nor adequate capital, road maps, and networks for the ones that do.

To thrive, we need to come together and change the narrative. It’s time for us to recognize the urgent challenges and immense opportunity in this emerging sector, making and encouraging investments that are commensurate to the challenges faced by millions of families living with autism.

FUENTE: Autism Can Be a Growth Market, if Investors Help It Scale | Barron’s (barrons.com)

Publicado en AUTISMO, PROYECTOS | 39 comentarios