Autism Lives Matter

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

#AutismPandemic

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.

Shockingly, other research institutes have reported higher prevalence rates with as many as 1 in every 45 children diagnosed with ASD in the US in 2020, and even higher rates in South Korea and Hong Kong where 1 in 38 and 1 in 27 children are being diagnosed with Autism, respectively.

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.

In the GBD, Autism Spectrum Disorders were found to have the longest and most sustained years of healthy life “lost” across all major mental disorders, covering practically the entire lifespan of an individual reflected in the prevalence of ASDs from birth to either the loss of the diagnosis (those able to live a healthy/normal life) or death.

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.

#LivingWithAutism

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.

In the United States, families with private insurance have been found to be 5 times more likely to have out-of-pocket expenses compared to publicly insured children.

In 2012, the advocacy group Autism Speaks reported the estimated lifetime care cost of an individual on the Autism spectrum at around at $2.3 million dollars in the United States and £1.5 million in the United Kingdom.

Lifetime care costs of ASDs were also found to be among the highest across individuals with other kinds of intellectual disabilities, where non-medical expenses including intervention services, therapies, special education, child daycare, diets, travel expenses for treatments, residential placements and care for ASD adults (i.e. those who age out of school and can no longer live at home with their parents) accounted for the largest proportion of Autism-related costs.

Beyond economics, research indicates that average ASD families suffer a kind of emotional toll unlike anything families with typically developing children may experience.

Mothers of adolescent and adult children with ASD have been found to spend significantly more time providing childcare and doing chores, and less time in leisure activities compared to mothers of typically developing children. Fatigue, arguments, and stressful events have been also found to be significantly more common among mothers of individuals with ASD compared to those without.

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.

#AutismIsMedical

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 to the 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.

#AutismIsTreatable

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.

Researchers at Duke University School of Medicine have analyzed outcomes to SCTs in clinical trials for ASD by various univariate metrics such as non-verbal IQ (Dawson, Sun, Kurtzberg, et al. 2020) to provide a glimpse into why some ASD-diagnosed children benefit much better from SCTs compared to others.

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).

In 2017, researchers at the Rensselaer Polytechnic Institute also published (much needed) clinical characterizations of ASD vs. neurotypical individuals based on metabolites obtained from blood samples using machine-learning algorithms (Hanh, et al. 2017).

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.

Preventive analyses of metabolic profiles from blood samples of ASD mothers vs. those of typically developing children have been used recently to identify mothers-to-be who might be at risk of having a child with ASD before pregnancy (Hahn, et al.) and have also been used to estimate the chances of having a second child with ASD (Hahn, et al. 2018).

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.

#FlattenTheAutismCurve

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.

In contrast, grassroots movements of ASD parents launched Go-Fund-Me campaigns in 2019-2020 and funded phase-II and phase-III clinical trials with their own money after financial support for leading researchers conducting vital research for Autism was withdrawn.

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 Engineer

Excerpt from the book “I Know You’re in There. Winning our War Against Autism” by Marcia Hinds (2020).

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s