Ronit Molko - Ronit Molko, Ph.D., BCBA-D | Investment Consultant

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May 9, 2025May 9, 2025

A Month of Mourning: Autism Awareness Overshadowed by Tragedy in April 2025

April is designated as Autism Awareness and Acceptance Month—a time meant to celebrate neurodiversity and advocate for inclusion. Yet, this April was marked by a series of heartbreaking incidents that underscore how far we still have to go in protecting and supporting autistic individuals.

On April 5, 17-year-old Victor Perez, a nonverbal autistic teen with cerebral palsy, was shot nine times by police in Pocatello, Idaho. Responding to a call about a disturbance, officers encountered Victor holding a knife in his fenced yard. Within seconds, they opened fire. Victor succumbed to his injuries after being taken off life support on April 13. His family and disability advocates have rightly condemned the complete lack of de-escalation and the use of deadly force on a disabled child in distress.

Victor’s death was heartbreaking—but tragically, it was just one of a number of lives lost in April. At least five autistic children died this April after wandering from safe environments—many drawn to water, which remains the leading cause of death for children with autism. In Nebraska, 9-year-old Kendrix Brehmer drowned in a lagoon after leaving his school during recess. These incidents are part of a disturbing trend: the National Autism Association reports that eight children with autism have died in 2025 due to wandering, with most fatalities resulting from drowning.

These stories are more than isolated tragedies–they are symptoms of a deeper, systemic failure in ensuring the safety and well-being of autistic individuals. While awareness campaigns and symbolic gestures are important, they must be accompanied by concrete actions: comprehensive training for law enforcement on interacting with neurodiverse individuals, investment in community support systems, and widespread implementation of safety measures to prevent wandering.

As the need for better training becomes painfully clear, a number of new programs have emerged to help law enforcement officers interact more safely, respectfully, and effectively with people on the autism spectrum:

Autism Risk & Safety Management: This program offers comprehensive training tailored for first responders, emphasizing the importance of understanding autism-related behaviors and appropriate response strategies.
VirTra’s V-VICTA® Program: VirTra has developed certified law enforcement autism training curricula, such as the V-VICTA® program, which utilizes immersive simulators to provide officers with realistic scenarios. This hands-on approach allows officers to practice and refine their responses to situations involving individuals with autism, ensuring they are better prepared for real-world encounters.
IBCCES Law Enforcement Training: The International Board of Credentialing and Continuing Education Standards (IBCCES) offers a 2-hour online training program for police teams. This course educates officers on what autism is, how to communicate and interact with autistic individuals, and best practices on safety and de-escalating in specific scenarios. The training was created by experts as well as autistic adults to build understanding, promote empathy, and encourage more positive and effective communication.

These initiatives are important steps. But they are still far from enough.

I spoke about this in my 2018 TEDx talk, and heartbreakingly, we’re still seeing the same patterns today. For real change to happen, these kinds of trainings must become standard across all police departments nationwide–not optional extras, but essential education.

This past April should be a wake-up call. If we say we accept autistic individuals, then we must act like it. That means creating a world where they are not only seen and acknowledged, but also truly safe, supported and valued.

We owe that to Victor. We owe it to Kendrix. We owe it to every family living in fear that the system won’t protect their child.

As we reflect on these tragedies, let it serve as a call to action. The lives lost in 2025 compel us to move beyond awareness and toward meaningful change.

February 27, 2023February 27, 2023

How Can We Be Happier?

Americans today are emotionally distressed. Many are nervous about the economy, struggling to afford rent or buy a home, frustrated about the direction of the nation, feeling culturally and politically divided, socially isolated and most concerning of all, uncharacteristically unhappy.

We know Americans are feeling blue because they tell us so. According to a survey by the University of Chicago, the percentage of Americans saying they are “very happy” has nosedived since 2000 from 34% to 19% while the percentage who report they are not happy has more than doubled to 24%. That probably understates the issue because admitting this in a survey requires an individual first to admit it to themselves.

Before we bemoan our emotional state we need to determine what happiness is. Many efforts have been made to define it and they seem to coalesce around the idea that happiness isn’t so much an ephemeral state as a durable way of being. Happy humans are preternaturally happy or find ways to be; things and events don’t make us happy.

Indeed, a massive, longitudinal Harvard happiness study begun in 1938 and, still ongoing, has reached some counter-intuitive conclusions. Regardless of participants’ sex, age and other demographic attributes, even irrespective of their life experiences, the study found, genetics determine about half of happiness; some people are hard-wired to find the good or bad in everything. As for the rest, the markers of success in our country – money, health and possessions, for example – contribute little to happiness.

Poverty can inhibit happiness, but the link between income and joy frays once basic needs are met. A 2010 study by the Nobel Prize-winning psychologist Daniel Kahneman, the author of the bestseller Thinking Fast and Slow, found that income’s impact on our emotions flattens out around $75,000. Above that, an increase in income barely ripples on the happiness meter.

It is the relationships in our lives, it turns out, that have the greatest impact on our physical and emotional health, our lifespan and our happiness. “Taking care of your body is important, but tending to your relationships is a form of self-care too. That, I think, is the revelation,” said Robert Waldinger, a psychiatrist at Massachusetts General Hospital and a professor of psychiatry at Harvard Medical School, and director of the study.

As explained in this article by Gregg Vanourek, this all hints at the ultimate aim of happiness: we want to feel like we are living a meaningful life, one filled with daily pleasures, opportunities to do what we do best, and using our strengths to serve a higher purpose, like raising children, working for a cause that you’re passionate about, or simply doing good for others.

Consider this: marital satisfaction, a dynamic social life with a web of friends and family, and a strong sense of a greater purpose is the most powerful drug cocktail for achieving health and happiness. Loneliness, which affects a quarter of adults aged 65-plus, is as dangerous to health as smoking and alcoholism.

“When we gathered together everything we knew about (the participants in the Harvard study) at age 50, it wasn’t their middle-age cholesterol levels that predicted how they were going to grow old,” said Dr. Waldinger “It was how satisfied they were in their relationships. The people who were the most satisfied in their relationships at age 50 were the healthiest at age 80.”

The implications for all of us are simple but startling, and they offer a roadmap to happiness. Spend less time pursuing material advantages and more time nurturing strong human bonds with those around you. Reconnect with friends and family, curate nascent friendships, and intentionally develop or maintain a rich web of social connections.

By: Ronit Molko
Forbes Books Author
Forbes Books

September 14, 2022September 14, 2022

Addressing Student Mental Health Is Complex … And Critical

An image of a teen looking worried while sitting against a wall, with her right hand arm on her knee, supporting her head

Forbes Books Author
Ronit Molko
Sep 13, 2022,03:59pm EDT

In a previous blog on my website written for Radicle Health, I discussed the broad mental health issues facing students today in our schools and on-campuses across the country. The focus was primarily on current response procedures, and what certain schools and states are doing to implement more nuanced support systems for student mental health crises. As we dig a bit deeper, we find that our ongoing mental health epidemic is not evenly distributed among students.

While mental health issues in young people have spiked since the pandemic, the current landscape is truly a minefield for young women, Black and Latinx youth, and those with sexual identity issues. Marginalized groups are suffering now like never before with their emotional and behavioral health.

An Alarming Increase in Suicide Risk

The numbers suggest a new tsunami of pain and suffering across the country. Three quarters of college students reported enduring moderate or severe psychological distress, according to the American College Health Association’s fall 2021 National College Health Assessment. Rates of depression, anxiety and suicidal ideation are even higher for students with sexual identity issues. A staggering 42% reported seriously considering suicide in 2020.

When nearly three of seven young people of any kind are thinking about suicide, that is a crisis. In one sense, it’s a shocking development, considering that our society has never been more accepting of teens and young adults with sexual identity issues. At the same time, it’s no surprise at all given the social isolation Covid imposed, combined with the health scare, recent racial and political tensions, the social pressures caused by online media and growing effects of climate change. It appears to be the greatest time in history to be young – and the worst.

Institutions that engage the mind must be alert to the emotional stressors that reduce cognitive ability. That puts schools on the front line of confronting this new crisis, especially as communities beyond the campus are so ill-equipped to do so.

Thoughtful Responses and Programs are Necessary

School districts and college campuses are working to address these emotional impacts as they provide education to parents’ most precious priority. They are employing several strategies to lower the temperature of psychological distress. Many school districts are leveraging social and emotional learning (SEL), which teaches managing emotions, developing healthy identities, feeling and showing empathy, and more. Research clearly demonstrates SEL “leads to beneficial outcomes related to social and emotional skills; attitudes about self, school, and civic engagement; social behaviors; conduct problems; emotional distress; and academic performance,” according to the Collaborative to Advance Social and Emotional Learning.

Also on the prevention side, districts are establishing positive behavior intervention and supports, a combination proactive and reactive system of individualized prevention and interventions for at-risk students. Districts are also moving away from the punitive reaction model for wayward behavior to restorative discipline practices, which focuses on accountability over punishment. Districts are creating formal partnerships with community agencies and other organizations that can provide behavioral crisis support and establishing crisis-response teams inside the schools to address mental health issues. Federal funding that was part of the Covid-inspired CARES Act is fueling many of the new programs to support primary school students’ mental health.

On college campuses, mental health is on the administrative radar like never before. Campus counselors are having to update their skills to provide for gender non-conforming students and change some of their practices to account for a whole new category of patients. This includes significant changes, like building more single dorm rooms for non-binary students, and small ones, like asking for gender rather than sex on forms.

Minority Students are More Deeply Impacted

For minority students, the challenges are analogous, but different. Black and Latinx families were more likely to work on the front lines during the pandemic, unable to work from home and avoid contamination. As a result, they endured higher infection, hospitalization, and death rates from Covid, exacerbated by “racial battle fatigue” following the George Floyd killing that exposed old wounds about police brutality against Black Americans. It is perhaps not surprising that 67% of Black adults reported in a July 2020 survey by the American Psychological Association that their experiences with racism are a significant source of stress in their lives.

For schools, this may also require a new sensitivity to the special needs of minority students, says Dr. Zainab Okolo, a family therapist. “For students to feel like they’re a part of campus, they have to be willing in some ways to divorce themselves from their [home] culture,” she tells DiverseEducation.com. “For some students, the campus culture and their home culture are so alike, maybe both parents went to the school, and they were born there, that there’s no divorcing. But for some students — students of color, first-generation students — they almost have to betray themselves to fit in.”

Educational institutions that aim to serve diverse student populations are having to pivot with the times and accommodate the mental health issues facing many minority student groups who have suffered because of, and since, Covid. Even if Covid recedes into the background, it is unlikely the emotional wellness of student populations will. The critical concern now is whether the efforts being made by institutions to address emotional wellness among students will persist as well.

August 2, 2022August 2, 2022

Providers Working with Communities to Address Student Mental Health

an image depicting children in a classroom, with a child raising his left arm to ask the teacher a question

Emotional wellness has become the elephant in the room in our schools today, as young people struggle like never before with their mental health.

A student at Long Beach State University in California called a friend in an emotional crisis, desperate for help and threatening to harm herself. The friend knew she had to act and in the absence of any on-campus crisis response strategy, she called campus security. To her shock, she discovered she had made the problem worse.

So goes the story told to Ashley Smith, a reporter for EdSource, an online publication highlighting strategies for student success.

After the call, armed police showed up at the student’s dorm room and dragged her off to a hospital psychiatric unit. At the time, the university lacked a comprehensive mental health response plan.

On-Campus Response Strategies Are Necessary

Following this incident, campus leaders recognized that mental health crises require a much more nuanced and humane response. Campus leaders devised a whole new strategy for student mental health. Implementation of this first-in-the-nation mental health strategic plan began last spring and will phase in its 60 action items over the next three years. Chief among them is a mobile crisis unit that responds to mental health emergencies with mental health professionals, not police.

Mental health has been a growing concern on campuses since 2013, according to a 2021 survey by the Association for University and College Counseling Center Directors. Ninety-five percent of the college counseling center directors said the number of students with significant psychological problems was increasing. First appointment visits at The University of Florida’s mental health clinic more than doubled between 2019 and 2020, and then increased again in 2021.

A Growing Crisis in Children’s Mental Health

The situation is similar for younger children. The Children’s Hospital Association reports that their member institutions recorded a nearly 38% increase in emergency department visits for mental health cases in the third quarter of 2021. They also reported nearly 54% more suicide and self-injury cases compared to 2020.

Though shocking, these numbers are not all that surprising. A pandemic that upended life for two years, mass shootings, racial tension, and angry political divisions have exacerbated the usual pressures that young people face. This is especially true for young people that are most susceptible to depression, eating disorders and other mental health issues. The rising mental health crisis among students has led to a bill presented to the California State Assembly, mandating that all public colleges in the state print a 24-hour hotline number on student identification cards for local mental health services.

There are many ways clinicians are responding to what many are calling a crisis. The Child Mind Institute this spring responded by embarking on a public awareness campaign anchored by the musician Pink, in which celebrities and ordinary people recount their stories of emotional struggle.

How Can Schools Work With Mental Health Providers?

Because students spend more time during the week in school than with their parents, school psychologists, counselors and social workers are crucial to maintaining students’ emotional health. School staff are often the first to identify changes in student affect or behavior. School psychologists and other behavioral health professionals in the schools can hone the screening process by developing strong relationships with teachers, staff and parents. Identifying children with issues early can prevent mental health crises.It is important for schools to have a plan in place to connect students to support services, whether in-school or in the community.

The Colorado Department of Education advises school districts to bring mental health professionals into the schools. “Utilizing mental health crisis teams can provide targeted and intensive mental health supports to students who require significant levels of support. These teams should include professionals, caregivers, community partners and stakeholders who understand robust approaches to mental health crisis management,” the department says on its website.

Mental healthcare providers have an unprecedented opportunity to connect with in-school and out-of-school communities to address student mental health, now that schools and their surrounding communities are more amenable to that service than ever. There is so much these providers can offer.

The Power of Telehealth to Expand Access

First, COVID has taught us the power of remote health services. Clinicians of all kinds can utilize telehealth to increase patient access to mental health services and minimize the stigma involved in seeking help by eliminating the public waiting room. Further, telehealth allows patients to receive care in the comforting surroundings and convenience of their own homes. Dropping the barriers to attending sessions boosts the likelihood of patient compliance and perseverance.

Patients have demonstrated a preference for telehealth services. The utilization of virtual appointments for mental health has hardly dropped off since COVID isolation, even as primary and secondary care patients are largely back in their doctors’ offices.

Behavioral health providers can also expand patient access to mental health by co-locating with primary care providers to offer more comprehensive services in one place. Improved access has been shown to correlate with better outcomes.

Emotional wellness has become the elephant in the room in our schools today, as young people struggle like never before with their mental health. It is incumbent upon professionals in the field, school districts, and higher education institutions to make mental health services as accessible, available, convenient and comfortable to use as possible.

By:
Ronit Molko
Radicle Health Advisory Board, Ph.D., BCBA-D
Aug 1, 2022

March 10, 2022March 10, 2022

MYTH: Nonverbal or Nonspeaking People with Autism are Intellectually Disabled

RONIT MOLKO, PH.D., BCBA-D
STRATEGIC ADVISOR, LEARN BEHAVIORAL

Just because someone is nonspeaking, does not mean they’re non-thinking. Around 25 to 30 percent of children with autism spectrum disorder are minimally verbal or do not speak at all. These individuals are referred to as nonverbal or nonspeaking, but even the term nonverbal is a bit of a misnomer. While nonspeaking individuals with autism may not speak words to communicate, many still understand words and even use written words to communicate.

Nonspeaking individuals with autism utilize a variety of augmentative and alternative communication (AAC) methods. These range from no-tech and low-tech options such as gestures, writing, drawing, spelling words, and pointing to photos or written words, to high-tech options like iPads or speech-generating devices.

There are several reasons that an individual with autism may have difficulty talking or holding conversation that are not related to intellectual disability. The disorder may have prevented the normal development of verbal communication skills. They may also have conditions such as apraxia of speech, which affects specific brain pathways, making it difficult for a person to actually formulate and speak the words they’re intending to say. Some may also have echolalia, which causes a person to repeat words over and over again.

While these conditions prevent many individuals from speaking, it does not mean they cannot learn, understand, or even communicate. There is a pervasive misunderstanding about this among the general population due to a lack of education. It is often wrongly assumed that anyone who has difficulty speaking is intellectually disabled.

This misconception can be particularly harmful when held by medical professionals. In the 1980s, as many as 69 percent of people with an autism diagnosis had a dual diagnosis of mental retardation, which would now be labeled intellectual disability. By 2014, that number had declined to just 30 percent, as researchers improved the diagnostic criteria for autism and a fuller picture of the disorder emerged.

Researchers are still working to try and improve diagnostics and better distinguish nonspeaking autism from intellectual disabilities. As Audrey Thurm, a child clinical psychologist at the National Institute of Mental Health in Bethesda, Maryland says: “We have to figure out who has only autism, who has only intellectual disability and, importantly, who has both intellectual disability and autism. That’s millions of people who could be better served by having an accurate distinction that would put them in the right group and get them the right services.”

It’s important to challenge the perception that those who do not speak cannot think. Not only do we risk failing to give them the proper supports and services, but we also undermine their individuality, ingenuity, creativity, and humanity by failing to see them as they truly are. Just because they are not talking does not mean they do not have much to tell us.

January 26, 2022January 26, 2022

Neurodiversity: What It Means, Why It Matters

Swedish climate activist Greta Thunberg attending Fridays For Future (School Strike for Climate) protest in front of a huge crowd near the Colosseum

BY RONIT MOLKO, PH.D., BCBA-D
STRATEGIC ADVISOR, LEARN BEHAVIORAL

If there is one enduring hallmark of the American experience, it’s the immense diversity found within our expansive borders. Most of the time, we perceive diversity via differences in skin color, language, clothing, places of worship, or even the foods people eat when gathered around the table with their families. There is, however, one major aspect of diversity that is often overlooked—one that comes as no surprise, considering it cannot be detected solely through visual means. I am, of course, referring to neurodiversity.

Coined in the late 1990s by sociologist Judy Singer—who is on the autism spectrum—neurodiversity is a viewpoint that characterizes brain differences among individuals as normal, rather than as a disability. This viewpoint reduces stigmas around learning and thinking differences, while calling attention to the ability of neurodivergent communities to benefit from multiple perspectives and make greater contributions to society. Central to the movement is a rejection of the idea that these unique individuals need to be cured or fixed. Instead, it’s held that people possessing different types of brains need to be embraced and provided support systems that allow them to participate and contribute as members of the community to the best of their ability.

Grounded in Science

Unsurprisingly, the foundations of this not so new movement are grounded firmly in science and empirical study. By leveraging MRI results from hundreds of individuals, researchers have been able to compare the brains of people diagnosed with learning differences to their counterparts. So far, studies have shown that the brains of neurodivergent individuals are, in fact, unique. For example, the part of the brain that maintains language processing works differently for people diagnosed with dyslexia. Additionally, the prefrontal cortex, which manages executive functioning and attention, develops much slower in children diagnosed with ADHD. In other words, these individuals are not necessarily operating with a learning deficit but rather possess brains that are literally wired differently.

A Neurodiverse Population

Whether a group of kids recently diagnosed with autism or adults still grappling with ADHD or dyslexia, the American neurodiverse population is quite substantial. According to a 2021 report from the Center for Disease Control and Prevention, one in every 44 children in the United States is diagnosed with some sort of autism spectrum disorder, and an estimated 5.4 million adults—or roughly 2.2 percent of the entire population—fall somewhere along the spectrum. Many people on the spectrum have contributed (or still do) to their communities every day, such as Albert Einstein, Anthony Hopkins, Henry Cavendish, Greta Thunberg, Jerry Seinfeld, and Elon Musk. They have been among the world’s highest achievers, impacting the arts, sciences, technological innovation, and activism.

In much the same way as the neurotypical population, the neurodivergent population is broad, diverse, and multidimensional. It’s crucial, then, for the public not only to embrace their different brethren but also to actively promote opportunities for them both in society and in the workplace at all abilities and levels.

Fortunately for society writ-large, corporate America is starting to take notice. A recent article published in the Harvard Business Review named neurodiversity as a bona fide “competitive advantage,” noting the unique and, often, incomparable output provided by atypical members of their workforce. Numerous companies, including Hewlett-Packard, Enterprise, Microsoft, SAP, and Ford, have recently begun to reform their HR practices in an effort to expand neurodiversity in their ranks by identifying, hiring, and empowering these unique individuals. The results, so far, have been outstanding, with managers noting legitimate “productivity gains, quality improvements, boosts in innovative capabilities, and broad increases in employee engagement.”

Diversity of all kinds, including neurodiversity, strengthens our daily institutions. Just as we are seeing a focus on diversity, equity, and inclusion (DEI) in employment and other areas of life and commerce, we must also remember that recognizing and celebrating differences, promoting justice and fairness, and ensuring true support and inclusion applies not only to people with observable differences but also to our neurodiverse populations. Not all cognitive differences are visible, and it’s crucial to keep in mind that there’s more than meets the eye when it comes to true diversity.

In another blog post, Dr. Molko explains the history and evolution of applied behavior analysis (ABA) therapy. Read the story.

October 1, 2021October 1, 2021

Let’s Stop Fixing Disabilities And Start Appreciating Differences

man in a wheelchair rolling through a pedestrian crossing surrounded by people walking in all directions

Able-bodied people comprise the dominant culture in America; thus, our cultural understanding of “normal” is contextualized around the contours of able-bodied activities. We consider, for example, an autistic mind or a visual deficiency that enhances other senses to be a detriment. In truth, these traits are often different ways of perceiving, understanding, and interacting with the world.

For many of the 60+ million Americans who have some kind of disability, this is frustrating. Their experience is not centered, and so their needs are not understood by a society built around how the able-bodied navigate the world. Instead, they are left to puzzle out their days with pieces that don’t always fit together. This despite the fact that even minor accommodations like a well-placed ramp or a thoughtful, private breakout space might make all the difference in helping these people lead “normal” lives.

Website Accessibility for Everyone

Let’s take one example: In the hyper-competitive online world, one would think websites would be designed to be accessible to as many people as possible. Yet, the disabled too often find themselves unable to properly navigate many sites. Common sense, good business practice, and the Americans with Disabilities Act all demand inclusive access and a similar shopping and navigation experience, yet many organizations fail to provide it.

Daryn Harpaz, a website content accessibility guidelines compliance specialist and founder and CEO of Zenyth Group, LLC, believes it is good business to consider the needs of 15%-20% of the population, and also just plain decent. “We should be enabling our community from a social aspect to be integrated, inclusive,” he opined. “And I think that says a lot about where we need to move in the direction of disabilities in general.”

Ableism and Ableist Misconceptions

The persistent inability of the able-bodied to recognize that not everyone has the same physical or psychological experience of the world that they do is today known as ableism. Living in a world meticulously designed to accommodate your needs—and even your most indulgent wants—is privilege. And while the emergence of privilege in any system is, to a degree, inevitable, refusing to grapple with privilege and its implications is a choice. We must be attentive to eliminating assumptions that reflect an able-bodied view of the world that does not create space for everyone and their diverse needs.

People with disabilities tell me that ableist thinking includes a variety of knee-jerk assumptions and misconceptions, including this one: that people with disabilities have no autonomy and constantly need help, even if they don’t ask for it. It’s not true, but it does precede another issue: people with disabilities must constantly explain themselves, for example by detailing how they became disabled. While these things seem well-intentioned—”I just want to help” or “I’m just trying to understand your experience”—they often only serve to make the able-bodied more comfortable with people who by simply existing challenge their privilege.

It is also an ableist misconception that all disabilities are visible. This perpetuates stigmatization and mistreatment of people with mental illness or autism, which is, after all, no different from physical impairment except that it affects the brain. Taken together, these false ableist impressions accrue and become barriers to inclusion and equity for disabled people.

Hearing a Product of Ableism?

Deaf people view themselves as a culture, with its own cultural signs and signifiers, not as a group that needs to be fixed. Many deaf individuals have chosen not to undergo cochlear implant surgery, even with the prospect of being able to hear for the first time.

Their rationale has been based on a fear of losing the community that has nurtured them, combined with the attendant fear of not being fully part of the hearing world. (To be fair, many deaf individuals do choose to get cochlear implants and are thrilled to enjoy the miracle of birdsong, loved ones’ voices, and the rest of the world of sound.)

Many of those who make the decision not to have the surgery report backlash from relatives and friends who can hear, but not understand their perspective. That in and of itself helps explain their decision, they say. Individuals with disabilities often want, more than anything, to be recognized as complete humans, irrespective of their disability. In other words, to be considered “normal” just the way they are.

Oliver Sachs, the world famous neurologist and best-selling author, recounted the story in his book The Man Who Mistook His Wife for a Hat, of a man who led a full life as a blind person until doctors discovered that they could cure his blindness. His transition to sight was arduous and traumatic, and turned him into a miserable sighted person. While his doctor and sighted wife persisted in their effort to complete his transition to a sighted person, he eventually took back his cane and returned to his contented life without vision.

Similarly, Shona Davison, writing on the Autistic UK website, put it this way, “Often the kindest, most caring people believe the way to help us, is to help us become more ‘normal’. This is what happens when one takes a medical model approach to autism – when one considers autistic people to be broken, disordered, or ill.”

While the challenges and needs of disabled people are as varied as the individuals, those of us who benefit most from society’s current structure have a duty to expand the scope of those benefits and create a more inclusive world for all. Our perception of “normal” needs to shift from a binary consideration to one that is mindful of the diverse ways individuals can—and do—perceive and navigate the world. Issues of accessibility, both in physical spaces and online, need a critical examination and modern update to accommodate millions of disabled individuals who are currently marginalized by streets, buildings, and websites designed for the able-bodied and able-minded. We need to be ever-aware and ever-curious about the insidious nature of ableism, recognize it when we see it, and correct it however we can. And ultimately, the abled need to set aside their own misconceptions and personal hang-ups in order to appreciate that disabled individuals have the agency to define their own cultures and conceptions of normal.

Trying to solve these problems is a huge undertaking that might seem impossible. However, we must try. Even though no one can transform our ingrained societal norms overnight, change is possible if the able-bodied take the time to listen, empathize, and regard every disabled individual as a complex person trying like everyone else to fit in and build a life of their own. If we are going to start somewhere, let’s start by making that mindset “normal”.

November 10, 2020March 30, 2021

Value-Based Healthcare

A patient desperate for pain relief opts for spinal fusion surgery, a procedure that typically costs between $80,000 and $150,000. Spinal fusion can offer benefits to healthcare patients but it has a woeful success rate often tabbed at 50%. We know that three of every seven patients who undergo the operation require further surgical intervention or experience disability, opiate use, and prolonged work loss, as well as low return-to-work status.

Yet patients are charged the same fee whether they are wholly cured or can’t walk following the procedure. The disconnect between healthcare costs and health care outcomes has sparked a growing movement to price healthcare based on the results.

This is called Value-Based Healthcare.

In a nation whose healthcare costs exceed other similar countries’ per capita expenditures by whole number multiples, while producing inferior results, the United States may have the most to gain from this movement. Value-based healthcare, by definition, puts more emphasis on prevention, and on the treatment of chronic health issues, and places the patient at the center of the treatment regimen.

How Value-Based Healthcare Works

Dr. Christina Akerman, a professor of medicine at the University of Texas’s Dell Medical School, offers an example of value-based healthcare at work. She mentions a clinic in Germany that changed its treatment of localized prostate cancer to focus on incontinence and sexual performance, rather than simply on survival. This change was the result of asking patients what most concerned them about their treatment.

“Outcomes are the actual results of care, which does include clinical measures such as survival rates and the complications during treatments,” Dr. Ackerman said in a recent interview. “But, outcomes that matter most to patients are how care affects their quality of life.” The clinic’s survival rate is the same as those using fee-based metrics but its erectile dysfunction rate is close to half and its incontinence rate is 85% lower than its counterparts.

When patient engagement is at the center of the treatment plan and outcome measures, rather than volume, are the focus of care, the quality and value of health care increases.

Value-Based Care in Autism

Unfortunately, it’s not that simple. In the field of autism, each individual is unique and co-morbidities, from constipation to serious heart ailments, abound. That complicates diagnoses, treatment plans, and expected outcomes.

So how do we apply value-based reimbursement to the provision of care for autism? Some experts in the field believe the system would require dividing patients into age groups and determining the matrix of life skills they would need to develop.

For example, payment for services delivered to elementary-aged children would be determined by their development of social, communicative, and adaptive skills, while reimbursement for teenagers entering young adulthood would track with vocational skill acquisition. Other indicators might include quality of life, independent living skills, and self-determination.

The Many Benefits to Value-Based Healthcare

Better outcomes are just one benefit of value-based healthcare. Because this model favors prevention, it has been found to require fewer hospital and doctor visits, fewer tests and procedures, and overall cost savings for the system. It also boosts patient satisfaction, as patient input is sought and incorporated into the treatment plan.

The value-based model would require providers to shift their service delivery to prevention, requiring more time per patient on the front end. It pays off in reduced time spent on managing chronic diseases. In the long run, the value is not just higher for patients, but for providers as well.

The long-run return also accrues to suppliers who will have the opportunity to realign their products and services with positive outcomes and long-term cost savings. The need for this is already critical as prescription drug prices continue to skyrocket and drain healthcare budgets of families and institutional payors like the U.S. government.

Are We Ready for Value-Based Healthcare?

The current system is so siloed among different types of providers, as if humans are simply the sum of their organ systems, each acting distinctly. A patient-centered approach could offer benefits on multiple fronts – notably good health and money saved – to individuals, corporate entities, and the system as a whole.

The fee-for-service model is highly entrenched, but its shortcomings are evident in ever-upward costs and desultory results. It will be interesting to see if proponents of value-based healthcare can overcome the barriers to change and overturn the status quo.

October 8, 2020March 3, 2021

This AI Tool For Diagnosing Autism Could Hit The Market ‘In The Second Half Of 2021’

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A tool that helps pediatricians diagnose autism with artificial intelligence and smartphone video passed a key FDA test and could hit the market as soon as next summer, according to device-maker Cognoa, which recently announced its plans to submit the tool for final approval.

In a trial to measure its safety and effectiveness, doctors diagnosing with the Cognoa tool made the same decision as an expert panel more than enough times to beat its FDA benchmarks, said CEO Dave Happel. He expects the device, which Cognoa says will be the first of its kind, to be approved in the second half of 2021.

If approved, Cognoa could offer a faster path to diagnosis. Parents notice signs of autism at an average of 14 months, but it takes three years for the median child to get diagnosed at 51 months. One reason for the gap is the wait to see a specialist, which can take months to more than a year.

In contrast, Cognoa’s process can provide a diagnosis as soon as two to six weeks after a pediatrician suspects autism and orders the diagnostic, said Happel. That means children could get treatment earlier while their brain is more easily rewired, he said.

Cognoa’s AI works by processing the data of three questionnaires: from the pediatrician, the parents, and an autism specialist who watches two short videos of the child filmed by parents in the Cognoa app. Then the pediatrician receives a result from the AI program, which they use to make a diagnosis.

Currently there is no way to verify the tool’s claims of effectiveness. “Cognoa is not sharing the study data until after we have completed our submission to the FDA,” the company said in an emailed statement, though it will be published in a peer-reviewed journal “in the coming months.” The FDA cannot verify or comment on product applications, said agency spokeswoman Stephanie Caccomo in an email. The agency granted Cognoa Breakthrough Device designation status in 2019, which is a program to speed up development if the device is more effective in treating or diagnosing “life-threatening or irreversibly debilitating human disease or conditions.”

Part of autism business boom

Cognoa, which has raised $60 million since its founding in 2013, is part of a broader infusion of capital into companies for autism products and services. That growth has been fueled by an increase in the number of children being diagnosed with autism and the passage of laws, in all 50 states, that require insurance companies to cover autism services, said Ronit Molko, a consultant to private equity on investments in behavioral health companies and cofounder of the Autism Investor Summit. In the past five years, said Molko, there have been more than 100 deals involving autism-related companies, including the $400 million purchase of an autism therapy provider. “It’s kind of like a feeding frenzy,” she said.

A 2017 report by Research and Markets projected that the US market for autism treatment will grow to $2.23 billion by the end of 2021. The majority of autism companies are service providers that teach social, language, and behavioral skills, said Molko, who cofounded one such business, Autism Spectrum Therapies, before selling it in 2014. Companies making diagnostic tools like Cognoa are comparatively rare.

Molko understands the skepticism by some autism clinicians that products like Cognoa could diagnose as effectively as a specialist who observes a child for as many as 12 hours. At the same time, she sees the promise of AI to cut down the waiting time for diagnoses and make them more accurate. That would help children get services sooner, she said. “The impact on life, and the family, and that individual child is huge.”

Insurance companies also see the promise, according to Happel. They are interested in covering Cognoa, he said, because it will be less expensive than the many specialist visits required for a traditional diagnosis. Insurers are also interested in the device’s potential to get children into treatment earlier, which could improve their diagnosis and lower their need for costlier long-term services. Happel also expects Medicaid, which pays for diagnosis and treatment, to cover Cognoa. The company is still working on pricing the product, he said.

‘Not the answer’

Catherine Lord, an autism clinician and professor at UCLA, agrees that a shortage of specialists like herself is behind the long wait for diagnoses. But products like Cognoa’s will not fix the long wait time, said Lord, the creator of a widely-used diagnostic tool, because they do not provide as many details about the child’s condition as a traditional diagnosis.

Without knowing the severity of autism or the presence of mental disorders, such as ADHD, that often accompany autism, parents can’t make informed decisions about their child’s treatment and education, she said. “The label is an important start, but it is not the answer,” said Lord, who regards Cognoa as a screening device. “It might increase knowledge and referrals,” she said, “but this is just going to send more kids to me.”

In an emailed statement responding to Lord, Cognoa said the device “provides pediatricians with the information needed to give a detailed diagnosis of autism … and prescribe specific individual early interventions” based on criteria from the American Psychiatric Association. For more complex treatment, pediatricians can make referrals to “local specialists and therapists who can provide more specific guidance when needed. A diagnosis of autism is often needed for eligibility to these resources.”

To Lord, there is a straightforward solution to cutting wait times and addressing the shortage of providers: Hospitals should hire more specialists to make evaluations, she said. They have not done that, she argued, because the procedures don’t make money. “The hospital pretty much breaks even,” she said — “or loses money.”

Graison Dangor Contributor

August 6, 2020March 3, 2021

Technology, Personalized Medicine, And Autism

Imagine walking into your doctor’s office and being greeted not by people who invite you to wait, but by a scanner ready to gather information about your heart, kidney, lung and liver function. Scanning your body for a near-complete diagnostic work-up, the scanner forwards your results to a giant screen in the exam room where your doctor awaits — masked and gloved, of course — to discuss the results and create a personalized care plan.

This practice was already being implemented pre-Covid at doctors’ offices like Forward, a San Francisco-based company that combines cutting-edge technology with doctor-patient partnerships for clinical solutions personalized to the individual rather than the one-size-fits-all approach that dominates today’s clinical approach.

Humalogy = Humanity + Technology

The intersection of technology and humanity is creating new pathways for personalized, or “precision” care heretofore unattainable. We have already seen how genetic testing has revolutionized screenings for cancers and other conditions that have a hereditary component.

This is not a big leap. Hip replacement surgery involves the implantation of titanium ball joints in humans for improved quality of life. Pacemakers and left ventricular assist devices (LVAD) implanted in desperately ill heart patients can extend lives for years, even decades. And cochlear implants allow deaf people to hear. The march of progress suggests the pace of implanting non-human body parts will accelerate.

The Need to Proceed with Caution

Klososky predicts an accelerated pace of humalogy will lead to ethical dilemmas that must be addressed. “It seems so far away and difficult to get our hands around an augmented human being – a digital centaur as it were. Because I believe this is closer than most people think, and that it will be such a crossroads for humanity, I suggest we give a lot of thought to tomorrow’s implications today,” he said.

Klososky, founder of Future Point of View, sketches out optimum blends of humanity and technology. For a dad to play catch with his son, the optimum mix is all human. For an Internet search, an algorithm does all the work in hundredths of a second without human involvement. In many cases, a balanced approach that blends humanity and technology will serve humans best. We have seen this play out in the rush to telemedicine during the Covid pandemic.

This could be heady stuff for those of us in the autism community. If you’re like me, your head is swimming with ideas about how this could work for autism – and how it could go terribly wrong. We need to be especially careful not to attempt to “fix” those with autism. It’s one thing to use technology to diagnose and treat earlier and better, and to allay some of the effects of autism that interfere with the ability of individuals to function. It’s quite another to fundamentally change who someone is.

The Promise of More Precise Care

As the implantation of technology creates more diversity in the biology of humans, the implication for treatment of all conditions, including autism, is increased individualization of treatment. More than ever, patient health history, behaviors, environments and genetic variations will have to be considered when making clinical decisions.

During the Obama Administration, the White House launched the Precision Medicine Initiative with this in mind. The White House committed $215 million to “pioneer a new model of patient-powered research that promises to accelerate biomedical discoveries and provide clinicians with new tools, knowledge, and therapies to select which treatments will work best for which patients.”

Imagine for a moment the impact such tactics could have on the diagnosis and treatment of various cancers. Presently, most recommendations are based on averages and customized only to the extent of broad markers like age, sex and previous cancer history. Precision medicine could, and is starting to, replace that with a diagnosis and treatment regimen bespoken to the specific physiological characteristics of each individual. Colonoscopies, for example, are recommended based on age and family history. Treatment protocols for colon cancer are determined almost entirely by the extent of the cancer. Precision medicine could help improve assessment of risk for each individual and help craft a personalized treatment plan attuned to each patient’s unique physiology.

The benefits of personalized care can be extrapolated to every kind of condition and body system. The promise of precision medicine is more and better treatments tailored to an individual’s specific conditions, with the promise of improved efficacy and fewer side effects. In a nascent field like autism, where we are just beginning to understand etiology and treatment, the positive impact on outcomes could be significant.

Article written for Forbes.com.