Autism Lives Matter

Autism Lives Matter

Autism Lives Matter

Posted by ENRIQUE BASURTO

The Autism pandemic is without question one of the most alarming and devastating public health crises of our generation.

According to the CDC, in 2020 1 in every 54 children was diagnosed with Autism Spectrum Disorder (ASD) at the age of 8 in the United States a staggering 185-fold increase since 1970 and a ~3x increase over the last 20 years, with the prevalence among boys being 4.3x compared to girls.

Depending on the severity, Autism may significantly limit the capacity of an individual to conduct daily activities, adequately participate in society and (more often than not) it negatively influences the person’s educational/social attainments and may hinder employment opportunities.
Currently, only a small percentage of ASD-diagnosed individuals are able to join the workforce and live independently whereas the vast majority require some level of life-long support to perform life skills ranging from basic communication, personal hygiene and toileting in the most severe to developing social and decision-making skills (to name a few) in the moderate-to-high functioning cases.
Caring for individuals with ASD can also be extremely demanding (at times, even dangerous) for caregivers especially where access to medical services and support are inadequate, leaving parents/caregivers alone in a lifetime battle against an incredibly enigmatic, complex and under-researched disorder since the early years of life through the (at times, premature) death of their children.
In 2017, scientists at the Indian Council of Medical Research published the Global Burden of Mental Disorders (GBD) report from 1990 to 2017. They used DALYs (Disability-Adjusted Life Years) to measure the years of life “lost” of an individual due to a disability, i.e. 1 DALY = 1 year of healthy life lost.

Annual DALYs are also useful indicators to identify health-related priorities across regions and track progress over time. According to the Global Health Data Exchange and Our World in Data, annual DALYs attributed to ASD have been on the rise since 1990 across all continents estimating annual DALYs between 4.3 million and a staggering 9 million worldwide between 2016 and 2019.

In the vast majority of cases, a lifetime of speech, occupational, ABA therapies, special diets, supplementation, medication and/or biomedical treatments are both emotionally draining and economically devastating for families.
Beyond economics, research indicates that average ASD families suffer a kind of emotional toll unlike anything families with typically developing children may experience.
In recent years, the financial and emotional impact of ASD has also been reported to lead to long term marital strains as divorce rates among parents of children with Autism have been significantly higher than those of among parents of typically developing children.

Although the “empowerment” of caregivers has been recognized as a public health need for the adequate care of individuals with ASD by the World Health Organization, current and future estimates associated tothe increasing incidence rates of Autism call for more expedient and concerted efforts to advance the collective scientific understanding of this global pandemic, comprehend its etiology, and develop preventive measures and treatment alternatives,
  • Why is ASD much more prevalent in some countries than others?
  • Why are boys much more likely to be diagnosed with ASD than girls?
  • Why do some biomedical treatments, diets and supplements work for some kids but not others?
  • What biomarkers and/or scanning technologies may be leveraged to diagnose ASD and its level of severity?
  • How can we “flatten the Autism curve” to achieve a significant reduction in ASD symptoms and behaviors in the existing and prevent future cases?
To date, there are no definitive answers to any these questions. Or many others.
Although some (clearly, high-functioning) ASD individuals have depicted Autism as an expression of “neurodiversity”, for the vast majority of people on the spectrum the struggle is well beyond philosophical debates. It is a medical condition, but luckily one that has demonstrated time and time again to be (at least to some extent) treatable.
At the Autism Research Coalition (ARC), we have consistently used hashtags such as #AutismIsMedical and #AutismIsTreatable to create an online library with hundreds of relevant articles, scientific publications and interviews with top researchers investigating promising treatment alternatives for ASD individuals with encouraging results.
A common struggle reported by researchers however is that “success stories” tend to be incredibly individual-specific and hence, it’s been hard to demonstrate statistically significant improvements in traditional placebo-controlled clinical trials.

For example, although some ASD-diagnosed children have observed remarkable “gains” as a result of biomedical treatments such as stem-cell therapies (SCTs) other children have not observed the same level of reduction in ASD symptoms and behaviors.
Unfortunately, although there are plenty of individual stories of children that have either fully or partially “recovered” from Autism through SCTs no statistically significant improvements have been demonstrated so far across subjects in placebo-controlled trials.
Other institutions have also provided promising outcomes in alleviating Autism symptoms and behaviors along with gastrointestinal issues by addressing the gut microbiome. In 2019, researchers at the Arizona State University published the results of their Microbiota Transplant Therapy (MTT) study with ASD-diagnosed children. Although results were preliminary due to the limited sample size, the research team reported a remarkable near-half reduction in Autism symptoms and behaviors 2 years after the completion of the MTT trial (Adams, et al. 2019).

To this day, although some researchers have offered very promising proxies that might be leveraged to diagnose ASD and its severity clinically (Anderson, et al. 2019 ; Hanh, et al. 2020), actual biomarkers and diagnostics tools for ASD are yet to be developed.
In a few words, the key takeaway from the collective counsel provided by top research scientists that have so far spent many decades investigating Autism is this,
Autism is a medical condition and hence, one that could be potentially treatable.
Sadly, most publications, findings and “success stories” tend to go largely unnoticed by health authorities and by the mainstream media. Meaningful discussions are at times confined to private chats or social media groups led by knowledgeable parents (doing their best to provide some direction to the incoming wave of parents and caregivers who join these groups every day) who can appreciate the merits of potential treatments.

If there’s one lesson we can all learn from 2020 is that the entire world can come to a halt to find answers and develop therapeutics in record time when there’s willingness, determination and focus to address a global health crisis.
Today, those leading the charge are the same ones who are desperate for answers. The army of parents, doctors, researchers, therapists and teachers battling to propel ASD children forward every single day in spite of (what at times feels like) unsurmountable challenges and disadvantages compared to other kids their age. Parents who won’t take “No” for an answer. Parents who have been told time and time again by medical experts that there’s nothing else they can do, while witnessing success stories of other kids who have won the “Autism war” against all odds because of families who won’t back down and will never give up.
At the ARC, we have strived to partner with Autism specialists and top scientists to discuss their latest findings and advance clinical/non-clinical research. After witnessing numerous efforts from the brightest scientific minds in the field, we believe it is time to call for a concerted effort to expedite the development of therapeutics, stop the influx of new cases, and rescue our future generation from the life-altering, emotionally and economically devastating consequences of what could well be a preventable disorder.
What kind of incidence will be tolerable to have the willingness, determination and focus we have witnessed in 2020 to develop therapeutics for Autism, ADHD, and other neurodevelopmental disabilities? What amount of additional evidence will be needed to demonstrate that Autism is a medical condition to support researchers and fund vital critical trials to improve the lives of ASD families and prevent future cases?
As Mahatma Gandhi once said, “The true measure of any society can be found in how it treats its most vulnerable members.” May 2021 be the year where the world comes to a halt to “flatten the curve” of the global Autism pandemic (#FlattenTheAutismCurve) and rescue our future generation from preventable intellectual disabilities once and for all.

Some people think that we should just accept Autism and that if a child is treated it changes who that kid is. I am still the same person I was, only now I’m happy and can enjoy life. It is hard to understand that children are not receiving proper medical treatment because some people think we should “celebrate Autism.” When doctors believe the medical issues associated with Autism are just part of a “developmental disorder”, children are not treated for the same medical conditions as every other kid. Is that really okay?— Ryan Hinds, Aerospace EngineerExcerpt from the book “I Know You’re in There. Winning our War Against Autism” by Marcia Hinds (2020).

Published by Enrique Basurto, Autism dad, data scientist and statistician. Award-winning author in patient-reported outcomes. Thought leader in the design and execution of Advanced Analytics to support business decisions and academic research in the pharmaceutical/biotech industry. Founder, scientific researcher and author of the Autism Research Coalition. Founder and writer of the blog and support group, Stims of Joy

Comparte esta noticia

Otras noticias interesantes

Categorías del Blog

Tests

TEA

Suplementos

Recursos

Quelantes

Profesionales

Omegas

Noticias

Neuroestimulación

Microbiota

Laboratorios

Congresos

Celiaquía

ATEC

Akkermansia

CONTACTO

Responderemos lo antes posible.

ENEVIA HEALTH como Responsable del Tratamiento tratará tus datos con la finalidad de gestionar tu alta como usuario registrado. La base de legitimación es tu consentimiento manifestado en la casilla de aceptación de nuestra política de privacidad. No está prevista la comunicación de los datos, salvo cumplimiento de obligaciones legales. Puedes acceder, rectificar y suprimir tus datos, así como ejercer otros derechos consultando la información adicional y detallada sobre protección de datos en nuestra Política de Privacidad.

Enevia Health, LLC

30 N Gould Ste N, Sheridan, WY 82801, USA
+1 347-308-7888

Exclusivo profesionales

Su solicitud será revisada por nuestro equipo.

Nombre de usuario*
Nombre*
Apellidos*
Email*
Título profesional (médico, nutricionista, terapeuta...)*
Nº de colegiado*
Especialidad
Nombre de la práctica clínica*
Dirección de la práctica clínica donde se envíen los kits.*
Contraseña*
Confirmar Contraseña*
ENEVIA HEALTH como Responsable del Tratamiento tratará tus datos con la finalidad de gestionar tu alta como usuario registrado. La base de legitimación es tu consentimiento manifestado en la casilla de aceptación de nuestra política de privacidad. No está prevista la comunicación de los datos, salvo cumplimiento de obligaciones legales. Puedes acceder, rectificar y suprimir tus datos, así como ejercer otros derechos consultando la información adicional y detallada sobre protección de datos en nuestra Política de Privacidad.

Exclusivo Laboratorios

Su solicitud será revisada por nuestro equipo.

Nombre del Laboratorio*
Director del laboratorio*
Director médico laboratorio*
Número de colegiado Director Médico*
Teléfono*
Dirección del Laboratorio*
Localidad*
Provincia*
País*
Email*
Nombre de usuario*
Usado para login
Contraseña*
Confirmar Contraseña*
ENEVIA HEALTH como Responsable del Tratamiento tratará tus datos con la finalidad de gestionar tu alta como usuario registrado. La base de legitimación es tu consentimiento manifestado en la casilla de aceptación de nuestra política de privacidad. No está prevista la comunicación de los datos, salvo cumplimiento de obligaciones legales. Puedes acceder, rectificar y suprimir tus datos, así como ejercer otros derechos consultando la información adicional y detallada sobre protección de datos en nuestra Política de Privacidad.

Grupos de whatsapp

Nuestros grupos son la plataforma ideal para aprender y compartir tus inquietudes científicas sobre los temas de neurodesarrollo

Normas de los grupos:

  1. Sé amable. No se permite la intimidación, el insulto ni enfrentamientos personales.
  2. Respetar la privacidad de todos.
  3. Utilizar información lo más científica y fiable posible, citar fuentes.
  4. Queremos cumplir con las normas de Whatsapp y evitar temas que sabemos llevan a la clausura de grupos, así que os pedimos que en estos grupos no se discutan temas relacionados con VACUNAS, MMS, CDS.

 

*Nuestro fin es informativo únicamente, no se pretende sustituir el asesoramiento, el diagnóstico o el tratamiento médico.