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Category: Autism

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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.

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MYTH: Nonverbal or Nonspeaking People with Autism are Intellectually Disabled

Graphic that reads 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.

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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.

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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

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Technology, Personalized Medicine, And Autism

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.

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Healthcare Services Present and Future

Healthcare Services Present and Future

Covid-19 is understandably viewed as a crisis in the U.S., with a death toll topping 100,000 amid an economic shutdown that catapulted the nation into an instant recession. Nearly every sector of the economy has been broadsided by its effects. Rippling beneath the surface have been pockets of technological advance and investment opportunities, perhaps nowhere more than in the healthcare sector.

We are witnessing a wave of unexpected innovations in healthcare caused by the pandemic. With staff furloughed to reduce costs and in-person service curtailed, healthcare organizations are discovering new, more efficient delivery models. These include deploying robots for remote patient monitoring, third-party telemetry tools, vastly expanded use of telemedicine and an array of streamlined check-in venues and methods.

Many of these advances will outlive the pandemic, as healthcare providers recognize the time and costs saved by diving deeper into technology. For example, although telemedicine has been around for decades, its sudden and nearly universal adoption during the COVID-19 crisis has revealed more vividly to healthcare executives its benefits. Doctors report that up to 80% of their visits are currently being conducted virtually and that this experience has led them to recognize that a significant percentage of medical issues can be addressed in this way.

“Telemedicine has suddenly transformed from being a long-term ‘nice-to-have’ for increasing efficiency and expanding access to an essential requirement for patient triage, diagnostics, and engagement,” say Jonathan Bluth and Adam Abramowitz of Intrepid Investment Bankers.

As volume-based care has suffered under the new paradigm, the long-awaited shift towards value-based care may finally come to fruition. Experts and advisors expect significantly increased attention to be placed on capitation, Medicare Advantage plans, and accountable care organizations going forward, all sparked by the pandemic.

Indeed, if providers can work with payors to secure long-term reimbursement and deploy sustainable clinical model improvements, COVID-19 might redefine the healthcare experience for the better. In general, many payers have loosened restrictions and changed regulations affecting billing during the pandemic to provide for wider coverage of telehealth services.

How will this alter the investment landscape in healthcare? The pause in mergers and acquisitions in the second quarter of 2020 may linger, say Bluth and Abramowitz. “The speed of change and lack of visibility of the scope of the damage and the timing and velocity of the rebound make it difficult to price risk and value assets,” they write.

Let’s consider the impact Covid-19 is having on the prospects of three healthcare sub-sectors: home health, long-term care and autism services.

Home health has been buffeted by the response to the virus, with providers scrambling to maintain distancing in a hands-on care delivery model. Home health agencies have responded with increased telecare visits and more phone and video calls. Phone apps are helping enlist the aid of neighbors by connecting homebound patients to their community for help with grocery shopping, pharmacy pickups and health monitoring. Taken together, these innovations are creating efficiencies in the home health model that can convey benefits to patients and investors after the crisis has ebbed.

The future is bleaker for nursing homes, where 30,000 of the Covid-related deaths have occurred. Costs have exploded as facilities work to meet CDC guidelines, patient loads have plummeted as patients pass away and leave unreplaced by admissions, staff have deserted for health fears and reimbursements have fallen as states rope-in Medicaid expenditures. Occupancy in many homes has dropped below the 80% break-even level and are unlikely to rebound while the coronavirus persists.

For autistic individuals, the crisis has been a decidedly mixed bag. On the one hand, those with autism may by nature practice social distancing and these new social norms may provide relief and ease anxiety for some of these individuals. On the other hand, disrupted routines particularly affect those with autism, especially kids who may rely on daily support from professionals in their homes and schools. A lack of in-home services and the widespread shut down of clinics leaves children and families without the stabilizing support systems upon which they once relied. In addition, many with autism are least prepared to cope with the social isolation and economic strain. More potent tools delivering care remotely can reshape the delivery of services and benefit those enterprises that act fastest.

Nonetheless, a changing landscape does not mean the industry is doomed. Despite difficulties brought on by shutdowns, in-home and school-based providers are surviving by providing enhanced remote services. While smaller providers are bound to feel a greater strain throughout the pandemic, lean times create more opportunities for add-on acquisitions by larger providers that are more equipped financially to manage the present disruption. In fact, we are already beginning to see this kind of activity, with larger companies buying smaller ones using creative deal structures and existing financial relationships, hopeful to avoid reticent lenders and complicated debt financing. We don’t know how much longer the industry will experience this drastic reshape, but the companies thriving in this current environment are the ones whose buyers and investors have raised their level of scrutiny when it comes to discerning whether these consolidation behaviors are sustainable or provide long-term benefit.

As we monitor the state of the industry in the weeks and months ahead, some questions will help us qualify the changes to come:

  • What telehealth solutions are viable on a long-term basis?
  • How do outcomes from telehealth compare to direct services? Who benefits from telehealth?
  • How has the use of telehealth during COVID changed the service provider model for autism services and to what degree will the model change permanently?
  • Which service providers will blend in-person services with telehealth better?
  • Will this cause the mid-sized providers to start consolidating? (so they can get more scale and take advantage of cost efficiencies.)

In the end, a spirit of innovation is what continues to propel healthcare services forward through this exceptional epoch. While the headlines may portend a stormy future, reasons for optimism remain. The expansion of telehealth to near ubiquity is increasing patient access at a time we need it most. A shift towards value-based care rather than volume-based care is underway, and consolidation activity is gradually starting to stabilize the market for service providers. With the right guidance, healthcare services could emerge from the pandemic stronger and more patient-centric.

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How Race and Ethnicity Affect Diagnosis, Treatment and Support for Autistic Children and Adults

how-race-and-ethnicity-affect-diagnosis-treatment-and-support-for-autistic-children

Recent events have magnified inequities in our society along racial and ethnic lines generally and particularly in areas such as education, as instruction has moved online and become more parent-dependent. As one example, a 2019 study found that one-third of black households lack home broadband service and fewer than half own a computer.

This disparity inevitably affects autism diagnosis and treatment. Research in the last decade has found that black and Hispanic children are more likely than white children to experience undiagnosed autism, and to have their autism diagnosed later.

The impact of going undiagnosed is self-evident, but even waiting for a diagnosis is significant, as earlier intervention with behavioral treatment is closely associated with better long-term outcomes.

A co-author of a study on racial disparities in autism diagnoses told US News and World Report that the underlying causes are as yet unknown. “There may be various reasons for the disparity, from communication or cultural barriers between minority parents and physicians to anxiety about the complicated diagnostic process and fear of stigma,” said study co-author Dr. Walter Zahorodny, an associate professor at Rutgers New Jersey Medical School and director of the New Jersey Autism Study.

The differences extend beyond diagnosis to treatment and acceptance issues. Minority children are less likely to receive specialty care related to autism, and the amount of money at least one state spends on their treatment is lower, according to a 2013 study that found spending on white children with autism was roughly 20% higher than on black and Hispanic children.

A study on California’s investment for ASD (Autism Spectrum Disorder) treatment found “spending differences based on race and ethnicity. Compared to whites aged 3 to 17, average per-person spending was close to $2,000 per person lower for African Americans and Hispanics, with the least spending on African Americans.” The problem, however, is not unique to California or even the US. According to another peer-reviewed study on demographic spending for ASD treatment, for “a small UK sample of adolescents with ASD, mean total costs, which were primarily educational, were 40.9% higher for white than non-white youth. Among children ages 24–60 months, mean costs were 10.0% higher for white than non-white children.” This disparity is a systemic, global problem that requires an urgent seachange in mindset and political will on behalf of industry professionals and civil servants alike.

Cultural factors are at work as well, says Catina Burkett, a social worker from South Carolina who wasn’t diagnosed as being on the autism spectrum until age 46. She says being black and autistic consigns her to outsider status in both communities.

“When I am inflexible, I am sometimes called unfriendly, insubordinate, lazy, aggressive or uncontrollable. When I need to process a situation before I respond to it, some describe my quietness as a ticking bomb that may go off at any time,” she wrote in an opinion piece in Spectrum News. “Within the black community too, many people have tried to hold me to their idea of how I should behave as a black woman.”

Upon her diagnosis, Burkett searched the literature for information about her condition and found a plethora of valuable research validating her sense of isolation, “but I could find no research on autistic black people,” she wrote.

Indeed, the Centers for Disease Control and Prevention offers no information on race or ethnicity for autistic adults and roughly five of every six studies on autism fail to report the race or ethnicity of participants. In those that do, minorities are vastly under-represented compared to their share of the general population.

In order to boost diagnosis rates, Dr. Zahorodny recommends screening all children from toddlers to school-age children for autism and educating pediatricians about employing creative strategies to overcome communication barriers with parents. These might include using pictures or engaging the services of a patient navigator to discuss autism symptoms, diagnosis and treatment.

The American Academy of Pediatrics (AAP) recommends screening for all children for ASD at the 18-month and 24-month well-child visits in addition to regular screening. But, identification and diagnosis is just the first step. For disadvantaged families, gaining access to services is more challenging and the long-term effects of this are profound. Drexel University’s 2018 study found that “nearly half of teens on the autism spectrum live in households with incomes at or below 185 percent of the federal poverty level (about $45,000 for a household of four). One in four lived in a home that received at least one form of public assistance”. Making a significant impact on access to services goes beyond the individual with autism- it extends to supporting families in accessing quality education, healthcare and other support services.

Autism occurs across all demographics and ethnic groups, however, the impact of autism is not felt equally across these groups. Children and young adults from poorer households and minority groups experience fewer opportunities for services and employment and generally demonstrate poorer outcomes across a range of factors.

A cultural shift within the autism community may also be in order wherein we recognize diversity within our community, acknowledge the added burdens some members endure and work to eliminate disparities in diagnosis and treatment.

Article written for Forbes.com.

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A Different Kind of Autism Awareness Month

April is Autism Awareness Month, but unfortunately we will not see a Walk for Autism, Autism 5K, cookie fundraisers or Awareness Day celebrations during this extraordinary and unprecedented time.That doesn’t obviate the need or desire to increase awareness and understanding of autism throughout our country – and the world. It just requires some creativity to penetrate the consciousness of a population whose attention may be focused on the Coronavirus pandemic, social distancing and flattening the curve.

This is the 48th anniversary of the first Autism Month and in that time awareness has indeed exploded in concert with the incidence of the condition. Yet there is much work to be done before communities and policy makers have a firm grasp of the abilities, challenges and needs of autistic individuals. While the Covid-19 pandemic is a sudden global health issue today, autism is a daily global health issue that has been growing for decades and will continue into the future.

To recognize Autism Awareness Month while maintaining a safe distance from others will require individual initiative  and creativity this year. Here are just a few suggestions for actions you can take to promote understanding of autism and autistic individuals.

1. Find Events That Have Been Moved Online

Not all events have been cancelled. For example, the South Austin Support Group in Texas has been moved to Google Hangouts, where parents and caregivers can find a supportive community to discuss issues they face. A similar group in El Paso has been moved to Zoom, where participants can see and talk to each other in real time.

2. Share Best Practices with Others

You likely know people in your community who struggle with the issues around autism, whether they are autistic adults, parents of children with autism, caregivers or others. Take this time to reach out to one or more of your neighbors to lend support and trade tips you have discovered.

3. Celebrate Your Child’s Accomplishments

With all the stressors that Covid-19 brings, it is easy for parents to become despondent about their children’s progress. More than ever, this is a time to appreciate whatever strides your children have achieved. Take a little time each day to congratulate yourself and celebrate your child for the progress they have made.

4. Educate Your Co-Workers About Autism

You may be reticent about sharing your personal issues with co-workers, but Autism Awareness Month provides an opportunity to make an exception. And while you may not be working alongside your co-workers these days, you’re probably still communicating with them extensively. Discussion of the effect of distancing, school closures, and changes in routines on home life is the perfect entrée to a short education of the challenges and triumphs of having a child with autism.

5. Join a Webinar

Catch up with the April 4 webinar Autistic Explosion with Dr. James Coplan, who employs 3D modeling to illustrate the scope and types of autism. It has been recorded and is available online.

6. Support an Autism-Friendly Business

Families for Effective Autism Treatment in Louisville has created a registry of autism-friendly businesses in their area. Verywell Health, an online resource for medical information, has compiled a list of autism-friendly national businesses that includes companies whose products and services you could be purchasing now, like Microsoft, Home Depot, Walgreens, Ford and Smile Biscotti. These companies are intentional about hiring and training autistic individuals.

7. Lobby Your Legislators for Changes During the Covid-19 Crisis

Writing for Spectrum News, disability rights activist Ari Ne’eman has identified several legal constraints on caregiving to people with disabilities, including autism. He encourages others to lobby for removing caps on worker overtime, permitting family members to serve as support workers, preventing “temporary” institutional placements and ensuring continued oversight of group homes and other institutions for the disabled. Read the entire article here.

8. Focus on Your Child

The best advocacy any parent can do is with their own child. Advocacy takes place with your child’s teachers, in your neighborhood, on the playground, at the City Council, or anywhere others need to be educated about autism and persuaded to treat autistic children appropriately.

9. Make Every Month Autism Awareness Month

With two percent of children born today on the spectrum, ignorance and misunderstanding of the issues affecting autistic individuals will have significant and long-term ramifications for our nation. Let’s work to improve awareness and insight year-round.

Published By:
Ronit Molko, Ph.D., BCBA-D

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Helpful Tips for Your Child’s Routine Change

By: Ronit Molko, Ph.D., BCBA-D and Sally Burke, M.S. Ed., BCBA

The sudden disruption in routine due to COVID-19 is challenging for all individuals to manage as we adjust to a new, and hopefully short-lived, normal of staying at home and ceasing most of our regular activities. For families of individuals with autism and other disabilities, the disruption can be especially challenging.

Although families deal with planned schedule changes or transitions, such as school vacations and summer breaks every year, what we are currently experiencing is different. This is a sudden disruption to our everyday routines with the added pressure of trying to create a viable learning environment to accommodate home schooling or online learning as schools try to complete the year in a virtual environment.

This sudden disruption means that both teachers and parents have not had adequate time to prepare for distance learning and that children have unexpectedly been pulled out of school. Children rely on set classroom schedules and routines and seeing the same friends and teachers every day. Now add into the mix the cessation of center-based services, therapeutic interventions, and possibly in-home visits being limited or put on hold to help minimize the spread of Coronavirus (COVID-19) across the United States. This will likely cause confusion and uncertainty for many. Easing anxiety, setting up activities, and staying busy during these unexpected and possibly challenging times can help with this change.

Being transparent about the situation:

Easing any anxiety your child may be experiencing, due to the changes in schedules and routines, is the first step to settling in to a “new” temporary schedule. Children will perceive the added stress and anxiety in the environment and so it’s important to explain to your child what is happening in their world. Keep it simple with basic information and present the facts at the level appropriate for your child’s age and ability to absorb this type of information.  Even though you may be concerned yourself, it is important to model calmness when talking about the virus. Children pick up on your social cues and how you respond to new things. If they have questions, answer them. Don’t be afraid to talk about it. Remind them that they are safe. And, remind them that this will end and they will return to school and to their favorite activities.

There are a variety of websites with information on how to talk to your child about the coronavirus. This website offers a social story about the change in schedule due to the Coronavirus as well as a printable PDF.

An increase in sensory needs, anxiety and meltdowns:

Individuals with Autism Spectrum Disorder generally have increased sensory needs and it is likely that those needs will not be met during this challenging time. Expect to see an increase in anxiety, depression and perhaps OCD. Additionally, since autistic individuals frequently have trouble communicating verbally, often the only sign that your child is experiencing anxiety is through external expressions such as meltdowns and increased self-stimulatory behaviors. It is likely that you may see new behaviors in which your child may not have engaged in previously.

It is important to provide the space for your child to express his concerns. Russell Lehmann, motivational speaker and author reminds us that outbursts and meltdowns are the expression of inner pain, overwhelm, confusion, stress and anxiety. Simply, be present with your child and listen more than you talk. Validation of their experience and a safe space to release their emotions is important in helping to move through it. Helping children take long deep breaths throughout the day will calm the nervous system (both yours and theirs) and help to mitigate the build-up of stress and emotion.

Establishing routines:

It helps to create a routine at home that provides consistency and predictability. If your child does better with visual schedules, there are great resources available to you on the internet that can help you create your own daily written or visual schedules. We tend to take for granted that we know what is coming based on the time of day (12 means lunch is near), but many of our children can’t associate time of day with certain activities. Creating a schedule will help allow them to see what’s coming next throughout their day and may help to lessen some challenging behaviors that may emerge due to their lack of routine.

If this feels overwhelming, try creating mini-routines for different parts of the day; a waking routine, a morning play routine, a “schooltime” or learning routine,  a lunch routine etc. This is also a great opportunity to create and teach hygiene routines such as handwashing.

If you are receiving in-home ABA, seek help and advice from your BCBA to assist you in developing a daily schedule that will help meet your family’s needs. There are also greater resources available, via Telehealth, to receive parent training from your BCBA.

Staying busy, especially during your child’s typical school, daycare or ABA-service hours is the next step. The solidarity of many world-wide educational and additional sites offering free online resources is remarkable during this time of uncertainty. Educational sites, as well as museums, zoos, and even Disney are offering virtual treats for children of all ages. There are free options for temporary internet service if your family needs it. This is also a time to connect with your children in new ways- cooking or baking, playing cards and boardgames, taking a walk, making up games, and learning life skills. Alternate your schedule between electronic activities, written work, crafts or projects and playing inside or outside when available. Use transition warnings (timers, first/then statements and choices) whenever possible throughout the day to help navigate and manage their new schedules.

Remain calm, set up a new daily routine and stay busy. And remember that patience, not perfection, is the key. Know that this is going to be hard- taking it moment to moment makes it more manageable. These tips should help minimize the effects of these sudden and unexpected events on your child and your family. Stay safe and healthy.

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What Pediatric Traumatic Brain Injury Can Teach Us About Autism

What-Pediatric-Traumatic-Brain-Injury-Can-Teach-Us-About-Autism

Nearly three million Americans suffer a traumatic brain injury (TBI) each year, one quarter of them children. Most of these are mild, resulting in concussion, but 50,000 deaths result from TBI annually.

At the same time, one in 59 children is diagnosed with autism spectrum disorder each year. Three and a half million Americans live with autism spectrum disorder (ASD).

These two conditions share more than a surprisingly large impact on our children: they share many biologic mechanisms and symptoms. Researchers have begun inquiring into how diagnosis and treatment of ASD and TBI might inform each other and lead to breakthroughs in one or both.

Children with traumatic brain injuries exhibit many of the same challenges as children with autism. These include deficits in intelligence, memory, attention, learning and social judgment. Anatomical changes to the brain resulting from TBI can impair emotional decision-making, self-regulatory behavior, emotional perception and the ability to recognize non-verbal cues. These are also classic characteristics of autism.

Children with ASD often present with decreased diversity of microflora in their intestines, which can hinder brain development. For children suffering TBI, reduced metabolism can also lead to a lack of microflora diversity. Whether the nature of this reduced diversity is similar in the two groups will require more study, but administration of probiotics has had success in both.

Brain plasticity – the ability of one region of the brain to rewire itself to execute functions normally performed by a damaged region – offers a ray of hope to TBI patients and autistic individuals. With intense therapy, brain stimulation and intervention, children with these two conditions can learn new skills by “training” their brains to process information in new ways.

Applied behavior analysis (ABA) is considered the gold standard in autism treatment given the extensive research conducted on its efficacy. It is employed to redirect behavior from harmful and counterproductive to useful and beneficial, and to teach critical skills for independence. Begun early in a child’s life, the progressive learning process of ABA therapy has demonstrated success in addressing multiple deficits – e.g., verbal, attentional, and learning – associated with ASD. ABA is now being used to readapt pediatric TBI patients to their home environment. As with ASD, this therapy yields optimum results when begun early and maintained over time.

ABA requires children to verbalize (or express using assistive communication devices) the instructions they have been given in an iterative approach that builds beneficial habits. This progressive learning process is applied to multiple behaviors characteristic of ASD and TBI. Additional strategies such as Pivotal response treatment (PRT), based on the principles of ABA, targets “pivotal” areas of a child’s development instead of working on one specific behavior. By focusing on pivotal areas, PRT produces improvements across other domains of skill development.

Verbal behavior therapy is a comprehensive language program that focuses on understanding the purpose of words and how they are used to communicate specific ideas. Also built on an ABA foundation, verbal behavior positively reinforces correct use of verbal and non-verbal communication that connects the speaker and the listener.

Although ASD and TBI present similar symptoms, there is no evidence that ASD is caused by trauma or injury to the brain. Its causes appear to be multifaceted and complex, including genetics, fetal conditions and various maternal and paternal factors. Like TBI, skill development and expansion can be optimized with behavioral treatment that begins as soon as possible.

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The Sexual Abuse Epidemic Among People with Intellectual Disabilities

The-Sexual-Abuse-Epidemic-Among-People-with-Intellectual-Disabilities
In the era of #MeToo and increasing vigilance against sexual predation, there is burgeoning evidence that a significant cohort of people has been lost in the shadows.Although the exact extent of the problem is unknown, numerous studies have concluded that individuals with autism spectrum disorder (ASD) and other physical, intellectual and developmental disabilities are at dramatically heightened risk for sexual abuse.

A study of 55,000 children in Nebraska found that those with intellectual disabilities were four times more likely to suffer sexual abuse than neurotypical children. Meaning that estimated one-in-three females overall suffer sexual abuse. That suggests a staggering, and largely undetected, level of abuse perpetrated against autistic and other children with disabilities.

Researchers at Willamette University in Oregon postulated that autistic children may be targeted by sexual offenders because of their vulnerability and their communication challenges. The researchers noted that sexually abused autistic children may react in ways that can be misattributed to their condition. For example, an autistic child acting out without apparent provocation (such as showing resistance to a particular caregiver) might be misunderstood as reacting to an environmental stimulus, rather than to untoward actions against them. Authorities are reluctant to pursue these cases in criminal court because witness testimony is the key to a successful prosecution.

According to US Department of Justice data, individuals with disabilities disproportionately suffer their abuse at the hands of people whom they know and trust compared to other victims of sexual abuse. Children on the spectrum are generally more reliant than neurotypical children are on adults, often requiring assistance with activities of daily living like bathing and dressing well into teenage years and adulthood. Because children are taught to respect and comply with the commands of adults, their vulnerability is accentuated.

Considering the magnified risk that autistic individuals face, more research is needed to identify strategies that can prevent sexual assault.

Many in the autism field recommend initiating a conversation about the issue as early as possible and being as direct as is tenable. They say parents should shape the discussion in the terms most conducive to understanding among family members. The impetus for this is the particularly critical role parents play in educating their autistic children about sex because they are less likely to learn about it from popular culture or peers.

It is all the more imperative that children with intellectual disabilities at higher risk of sexual abuse have the ability to distinguish between appropriate and inappropriate behavior directed towards them. Unfortunately, there is a paucity of educational programs targeting healthy sexuality for these populations of individuals.

For individuals who are more severely impacted, who require higher levels of support, mere education and empowerment may be implausible or insufficient. For this population, often unable to distinguish appropriate from inappropriate touch, it is imperative that measures be enacted to reduce opportunities for abuse and vigilance remain constant to prevent it.

Relationships are central to life for autistic adults, as they are for everyone else, and for all the same reasons – love, companionship, support, sexual relations, and reproduction. Sexual predation destroys trust and undermines the ability to engage in healthy sexual and intimate relationships.

A two-part National Public Radio investigation found that sex education specially designed for individuals with intellectual disabilities can help them rebuild that trust and navigate the choppy waters of relationships, which are already maddeningly complex in the best of circumstances.

The alternative for individuals on the spectrum who have been abused may be a lifetime of isolation and loneliness. This prospect is as disheartening for these individuals as for anyone else.

All the research and journalistic investigations, such as those noted above, demonstrate that by improving the data describing sexual abuse of those with intellectual and developmental disabilities, strengthening their defenses against predation, implementing processes to prevent the opportunity for abuse to occur, and refining efforts to help those abused rebuild their confidence and trust, we can reduce incidents of assault and pave the way for healthier relationship building in this population.

Deeper reading on how we can improve these kinds of unfortunate conditions can be found in my book, Autism Matters: Empowering Investors, Providers, and the Autism Community to Advance Autism Services.

Published By
Ronit Molko, Ph.D., BCBA-D

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Disappearing Into Normality: Understanding Autism on Its Own Terms

Disappearing-Into-Normality-Understanding-Autism-on-Its-Own-Terms
The popular paradigm to describe individuals on the autism spectrum is linear: we conceive of individuals as mildly, moderately, or severely impacted by autism. These categorizations are also used diagnostically to determine how a person’s life and functioning is affected by their autism. Put another way, autistic individuals are referred to as needing lower-support or higher-support, often depicting how others perceive their functioning and adaptability.We measure the place individuals occupy on the continuum primarily by their ability to communicate, socialize and act “normal.” Interestingly, we do not speak about other populations or groups of people this way. We recognize cultural differences, language differences, and expect that people from different parts of the world will behave differently. But when it comes to individuals with disabilities we differentiate on a spectrum of “normal”.

Of course, there is nothing inherently better about “normal.” It’s simply the norm—the way most of us have agreed to act. “Non-normal” socialization is not necessarily worse.

The Speciousness of Normal

So, which of these individuals with autism is more “normal” as we define it: the highly verbal, articulate person with a college degree who becomes incapacitated when overwhelmed by sensory inputs and struggles with anxiety and/or depression, or the person with communication challenges limited to simpler, possibly repetitive tasks who accomplishes them every day and enjoys a social life, explores their passions, and lives with a degree of independence?

The first person appears “normal” to neurotypical people most of the time but encounters significant life challenges, many of which are not visible. This is why “normal,” as a qualifier, doesn’t carry much water.

The topic of normality and autism came up in my recent conversation with Dr. Sue Fletcher-Watson, a Chancellor’s Fellow at the University of Edinburgh’s Centre for Clinical Brain Sciences. She has conducted significant research on intelligence and socialization of individuals on the autism spectrum.

Dr. Fletcher-Watson believes that the great untapped reservoir of information about the struggles of autistic individuals comes from those struggling with the condition themselves.

“I think we really need to systematically explore how [the recommendations of] able, articulate, autistic adults can be translated into good practice for young children, people with learning disabilities, people with communication challenges, and so on,” she said.

“We’re looking at developing peer support models which would include matching newly- diagnosed autistic adults with people who have had a diagnosis for a while, and are very established in the community, but also maybe pairing parents of autistic children with an autistic adult, to get their insights and their perspective.”

Segregate or Integrate?

There is an ongoing discussion in the disability community and the legislature about the relative merits of organizing people with disabilities into their own communities. As research has demonstrated, and I have documented here, people with autism often report that they socialize more successfully with each other than with neurotypical people (and vice versa). Living within their own communities is often preferred and provides individuals with autism the freedom to organize their lives around their own social norms.

This would argue for creating communities of people with autism.

But many are suspect of creating living environments that could mimic institutions, weary of the way we institutionalized people with psychiatric conditions in the U.S. in the 1960s and 70s to disastrous effect. Today, federal law requires that many residential facilities for individuals with disabilities must be integrated with a certain number of non-disabled people.

Many caregivers and people with autism chafe at this law.

It’s a conundrum, Dr. Fletcher-Watson and I agree. After all, people with commonalities of all types organize themselves into segregated communities, whether it’s senior living communities for older people or summer camps for children with cancer.

What marks these communities as special are the commonalities in life experiences the members share, and the social norms inside them, which could be beneficial to people with autism who are naturally governed by norms not shared by the rest of society.

Dr. Fletcher-Watson describes the conundrum this way: “On the one hand, what our data seems to be saying is that we should provide opportunities for autistic people to be together. I’ve met autistic adults who’ve never met another autistic person, and that’s heartbreaking. So, that’s really important, to provide those spaces. But the risk is that you can also create a ghetto.”

The solution might be to allow people on the spectrum to choose their own living arrangements, and if the results are organic, successful communities of people with autism, then we should be grateful for a concept that improves their lives. At the same time, individuals with autism who prefer to mainstream their living situations would have that ability, offering everyone the opportunity to choose the lifestyle that best suits them.

For further reading like this blog, check out a copy of my book, Autism Matters.

Published By
Ronit Molko, Ph.D., BCBA-D