A sign for the Food And Drug Administration is seen outside of the headquarters

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

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.

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

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.

What Pediatric Traumatic Brain Injury Can Teach Us About Autism

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.

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.

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 Ronit Molko, Ph.D., BCBA-D

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

Autism Case 1 Donald Triplett

Autism Case 1: Donald Triplett

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

Donald Triplett was born in 1933 to Mary and Beamon Triplett in Forest, Mississippi. At that time, no one had ever identified the behaviors he exhibited as an infant and toddler. The Tripletts understood that their son was encyclopedic in certain areas but emotionally distant and violently opposed to minute changes in his daily routines. A year after institutionalizing Donald on their doctor’s advice, the Tripletts made the monumental decision to bring their four-year-old son back home. It was a decision that changed his life — and put him on the path to helping revolutionize our understanding of autism.

The Tripletts brought their son to renowned child psychiatrist Leo Kanner at Johns Hopkins. Kanner had seen other children with similar symptoms — children mesmerized by things and numbers but disconnected from people. Donald joined Kanner’s study of 11 children with, what he called, “autistic disturbances of affective contact.”

He labeled Donald “Case 1.” Donald Triplett is still autism case 1 today, at the age of 85, a testament to the dual powers of science and love.

The story in between is a remarkable journey of failure and ultimate triumph. Advantaged by a wealthy family and a supportive, tight-knit hometown, Donald has lived a happy life, learning to care for himself in the house in which he grew up. He graduated from high school and college and works at the bank his family owns. He has traveled the world and learned to show interest in others, even if it’s in his own quirky ways.

The road to acceptance and understanding for children with autism has been bumpy and winding. The 30s and 40s were the heyday of eugenics, which called for the sterilization — or worse — of people with mental disabilities and often led to institutionalization. Early researchers, including Kanner, blamed mothers for withholding affection. In the 90s, vaccinations were erroneously linked to autism, sparking widespread fear in parents — a fear that lingers with parents to this day.

Even today, the care and education of individuals on the autism spectrum remains inconsistent and fragmented. People employ methods designed to achieve outcomes that don’t always reflect real-world needs or apply to managing adulthood successfully. Most autism services end at age 18, leaving many adults isolated and unable to participate in society.

The case of Donald Triplett, Case 1, demonstrates that successful integration into society is possible through awareness, accommodation, and acceptance from the community. Of equal importance is an education focused on the skills needed for success in adulthood. It is instructive that Donald was taught to drive, but not until age 27, long after education ends for most people with autism.

Though Donald Triplett may have been the first recognized case of autism, the care and support of his family and his community is strikingly modern — a model for all the children who have followed him.

Why Identity-First Language Matters to Autistic Individuals

Why Identity-First Language Matters to Autistic Individuals

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

Are there autistic individuals in your life? Or are they people with autism? This is a critical distinction and a topic of debate in the autism community, one which recognizes that words matter and shape how we think.

Half a century ago, people with developmental disabilities were referred to using all kinds of pejorative terms. For many in the autism community, the sting of those dehumanizing terms lingers and informs their opinions on how they choose to identify themselves.

The debate happens between person-first language (people with autism) and identity-first language (autistic people). For many years, and especially in the professional and scientific communities, person-first language that acknowledges a person’s humanity first and their identity second is preferred and recommended.

The person-first preference is easy to understand. We are all people and individuals before we are our condition. Person-first language acknowledges that a person is not their condition. The condition is part of them but doesn’t define them.

But person-first language can feel cumbersome and stilted, and often offensive, especially to those at whom it is directed. And now, as we approach 25 years since the autism diagnosis became more prevalent and awareness began to increase, we have a large group of autistic adults to inform us about growing up with autism and how they see themselves in the world.

I have discussed this with many autistic individuals and their parents to better understand what this issue means to them. Many of these young adults, who often refer to themselves as self-advocates, describe that their autism is core to their identity and how they have known themselves since birth. Referring to them as a “person with autism” negates this. Many have said to me that using person-first language is designed to make me feel better, but actually dishonors who they are.

More to the point, autism is not an accusation, but a statement of fact. Autism is an inherent part of a person’s identity, just as gay, or Jewish, or female are. Before the general population can understand autism as a condition that bestows strengths as well as challenges, those in the autistic community must adopt this identity-first point of view and make their language reinforce that mindset.

In the 1960s, African Americans demanded to be described as “black,” as part of the Black Power movement. It was a point of pride, rather than a label of oppression that had scarred them for 200 years. People began chanting “Say it loud; I’m black and proud!” With this shift, blackness became and remains a core aspect of that community’s identity. Those activists restored power, and thus humanity, to “black” as an identifier.

Using the term “autistic person” or “autistic individual,” as I do in my written and oral presentations, affirms the value of the autistic identity. Individuals don’t have autism, the way they have the flu, they are autistic, a condition that describes the wiring of their brain and suggests the unique, complex and interesting individual they are.

The Opportunities for Investors in Autism Services

The Opportunities for Investors in Autism Services

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

The landscape for investment opportunities in autism services is growing and changing at a dizzying pace. As the diagnosis rate of children identified with autism spectrum disorder approaches 2.5 percent—nearly tripling since 2002—the demand for services is mushrooming.

The marketplace is also beginning to demand more sophisticated models of care and opportunities for autistic individuals. There have been multiple recent acquisitions of autism service providers and the land grab continues.

Considered the gold standard for autism treatment modalities, reimbursement for ABA is now mandated in 46 states, twice as many as in 2010. ABA is a scientifically-validated approach that encourages family involvement in treatment. ABA focuses on techniques that bring about positive changes in behavior, particularly in improving individuals’ abilities to care for themselves.

Recent acquisitions—including FFL’s investment in ALP, Blackstone’s investment in CARD, TA’s investment in BHW, and many others—illustrate the intense, continued interest in this sector. Although valuations are high and questions persist about the quality of management at many providers, other large investors are reported to be shaking the trees, searching for the best point of entry into the industry.

The investment space is not yet mature, making this the time to get in. Industry leaders are just now beginning to recognize the need for standardized outcome measurements that reflect the actual experiences of autistic children as they grow into adults.

Autism services offer investors interested in social impact a financially profitable opportunity. The autism services industry is badly fragmented, typically characterized by well-intentioned, clinically-focused, but inefficient businesses lacking the ability to attract top staff or scale and manage growth. It is primed for savvy-but-conscientious investors who can improve outcomes while generating a financial return on investment.

The combination of good business practices, shrewd servant leadership and focus on clinical outcomes can improve both the bottom line and the lives of people with autism spectrum disorder.

The autism services industry is ready to reward investors who bring those three together, which is why we’re already seeing the leading edge develop in a big way.

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