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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.

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.

Over the next decade, an estimated 500,000 teenagers with autism will enter adulthood, and potentially, the workforce. Many of these young adults will begin the job hunt, hoping to find work that can help them establish independence and gain more independence and personal fulfillment. But, unemployment remains a significant problem. 

Unfortunately, as things stand now, more than half of young adults with autism are unemployed or unenrolled in higher education. Of autistic adults who graduated from college, 85% are unemployed. Comparatively, the national unemployment rate is 3.7%.

Furthermore, though nearly 18,000 individuals with autism use state-funded vocational rehabilitation (VR) programs, in 2014 only 60% left the program with a job. Of that group, 80% worked only part-time for a median weekly rate of $160.00.

Clearly, there is room for improvement. So, what needs done? 

For Employers:

There are many great companies that have inclusive programs supporting a neurodiverse workforce, like SAP, Hewlett Packard, Microsoft, Ford, and Ernest & Young. Other companies actively recruit individuals who are on the autism spectrum, recognizing the unique talents and skillsets they can bring to the table. Right now, there are over 50 companies that rely on the work of employees who are on the spectrum. I wrote about one of these companies, Rising Tide Car Wash, in a previous blog post about supporting neurodiversity in the workplace.

These companies are setting a great example, but they are still the exception when it comes to inclusion for autistic individuals. 

Here are a few areas of focus that can move these hiring and retention practices for autistic individuals from exception to the norm:

• Recontextualize your interview process. For many individuals with autism, the interpersonal experience of an interview can be difficult. A traditional interview process, involving direct conversation, maintaining eye contact and reading social cues will be more challenging for most individuals on the spectrum. Therefore, many of these unspoken qualifiers like maintaining eye contact should be considered differently when weighing the fit for the job. In addition, it may be more difficult for autistic individuals to easily and clearly articulate what they know and what they can do for the company. Instead, give them an opportunity to show you what they are capable of and be patient. As the employer, approaching these interviews creatively, with an understanding of the individual is one of the most inclusive things you can do. 
• Beware of sensory overload. Loud, open office spaces might not be the ideal working environment for autistic individuals who experience sensory overload. When bringing on a new team member, make sure you’ve already discussed this potential issue. If it’s a problem for that individual, be ready with solutions. Designate a quiet place in the office where that person can go to work in peace or provide noise-canceling headphones. Provide accommodations such as noise-canceling headphones or adjustment in the lighting to ease overstimulation.  And communicate with other team members exactly what’s going on and why so that there is no resentment or misunderstanding.
• Focus on retention. It may be easy for leadership and team members to misinterpret certain behavioral traits of an autistic individual. It’s important that these misunderstandings don’t result in termination, as often times the person will mean no offense by their words or actions. Being aware of what’s really going on, and then communicating deliberately to course-correct and hopefully prevent later incidents should be the first consideration for employers who are serious about autistic inclusivity.

There are certainly a host of other issues to consider when implementing a more neurodiverse plan at work, and if you have further questions, an expert consultant could provide more insight. 

In the Autism Services Industry:

The autism services industry does a lot of good work helping children learn important skills. But an area for advancement is giving teenagers the skills they need to be successful in jobs.

Here are a few places to start:

• Identifying strengths and job matching. Essentially it comes down to the fact that employees are more likely to have success in their job if their skill set lines up with the requirements. Finding that fit starts with identifying the individual’s strengths and passions, and what skills make them standout candidates. For example, some individuals with autism thrive when executing tasks that require repetition and routines, making them strong candidates for assembly line, data entry, or other computer work. The range of skills autistic individuals can possess is as varied as the individuals themselves. Providers should be sure to involve them in the process of career pathing and job matching. The better we get at identifying talents and skills and matching them with an appropriate position, the closer we’ll be to solving the problem of workplace inclusivity. 
• Expanding coverage and access to services based on region. Services often vary across state boundaries. For example, Alabama saw 79% of individuals with autism find a job after vocational rehabilitation (VR), compared to 29% in New Mexico. Addressing these gaps and working together to create uniform VR protocols will help increase the number of autistic individuals placed in jobs that are strong fits for their skill sets. With the help of activist providers and investors, this change could be within reach and hugely impactful.

Finding, securing, and holding a job can bring a new sense of independence and fulfillment to the lives of autistic adults. If employers engage with inclusivity in good faith and providers are able to prepare autistic individuals with the skills they need to succeed, solving the problem for underserved autistic adults could be closer than we think, even if we still have a long way to go. 

Looking for more ideas? Check out my book, Autism Matters.

When I first began working in the field, autism interventions were primarily offered in clinic and research-based settings. As those therapies and the scientific understanding of autism evolved and as the demand for services has grown, a market for home-based and community-based services emerged. Services are expanding and the availability of funding is increasing, resulting in massive growth in this sector of the behavioral health market—with more services being offered in homes, schools, and centers nationwide. It is encouraging to see increased access to intervention and broader service offerings for individuals diagnosed with autism and their families. More treatment setting options result in reaching more people in need.

While school-based intervention exists to aid children in their ability to learn and interact in their school environment, center and home-based care focus on skills for success and independence at home and in the community. These types of intervention also teach other critical life skills. Often, the setting in which a child receives services is determined by the funding source or the availability of services in the community in which they live.

There has been much debate around whether services delivered in a center are better than services delivered in the home and vice versa. Some research suggests that an ideal program may be a hybrid mix of both home-based and center-based services. Studies have shown that children made great developmental gains in gross motor, fine motor, and language skills in center-based programs. Conversely, children made great gains in self-help and social skills by participating in home-based programs. While some service providers promote only one specific setting for intervention, research has demonstrated benefits to both. The critical variables that determine outcomes are the quality of treatment and the involvement of others, as well as a variety of other factors.

The Pros and Cons of Home-Based vs. Center-Based Services

The biggest benefit to home-based intervention is that it allows children to learn skills in their home environment where they feel comfortable and secure, and where they naturally spend their time at a very young age. This intervention also lends itself to the involvement of caregivers. Essential daily living skills, like hygiene or personal care, eating, and bathing, are typically easier to teach in the environment in which those activities occur.

Many states and payers advocate specifically for services to occur in the home. However, living situations, work schedules, availability of services, and other variables may preclude some families and individuals from home-based services as a primary treatment option.

Due to this challenge, the preference of some providers, and other issues, center-based programs are the subject of increased advocacy and popularity. Center-based therapies can be extremely effective because the environment provides structure and control. While a child may have some structure in a home environment, the staff at centers have the ability to create and enforce a structured routine using the clinical setting. They can control the environment, control distractions, and create mock situations to teach skills—like paying attention, taking turns, and following instructions. They can enforce the skills while familiarizing the child with the environment and routine of specific tasks.

Environments can also be manufactured in center-based intervention to expose children to specific situations and teach critical skills. For example, if a child is preparing to attend school, staff can create an environment that mimics the classroom and help the child learn the basic skills, like following directions and participating in a group environment.

There is considerable discussion in the literature about the generalization of skills which is a critical component of skill acquisition and development. Individuals with autism often experience challenges with generalizing a skill that was learned in one environment and moving it to another environment or another person. For example, if a child learns to respond to a request delivered by a specific interventionist in a specific room, the child may not respond to the same request when delivered by a different interventionist or in a different setting. Historically, research has demonstrated that generalization of skills is compromised when services occur in a center-based setting. More recent research focusing on parent behavior has shown that parents who participated in a center-based training program focused on facilitating generalization of skills in their children at home implemented the program successfully. Their children maintained their skills acquisition in multiple environments.

Providing intensive center-based services to children under the age of 5 presents considerations that need to be accounted for. For example, most children under 5 need to nap during the day. Maintaining a routine of appropriate nap time is critical for the development and growth of young toddlers’ and children’s’ bodies and brains. This complicates service delivery because of space requirements and noise restrictions, as well as the costs of maintaining staff during these activities. Some centers fail to meet this need. One can also question whether it is appropriate for a young child to be receiving intervention in a center for 8 hours per day.

Parental Involvement

Regardless of whether the program is based in-home or at a center, service providers should emphasize the importance of parental or caregiver involvement. When the parents or caregivers are included in the treatment program and learn the skills and strategies to continue the program on their own, the child can be completely immersed in the intervention. This establishes a system of contingencies and reinforcements that continues consistently at home and at the center—twenty-four hours a day, seven days a week.

Service providers should work with parents or caregivers to help define goals. The goals should be small at first to help facilitate the parents’ or caregivers’ participation and confidence as “teachers.” It is also important that the goals be relevant to family life, such as eating and sleeping habits, and that they are tailored to fit into the natural routines of each family.

Specialists providing home-based services face the unique challenge of having to provide intervention within an existing family dynamic. Sometimes that dynamic can be very challenging. The ideal situation utilizes caregiver or parental support. However, in some cases, this kind of support is not possible. That’s why it is particularly important that additional options be made available to the market; whether they be center-based, or even hybrid in nature.

As autism prevalence increases and more children with autism prepare for adulthood, the autism services industry needs to advance with the growing need. Early intervention and therapies that teach important life skills are increasingly important. Center-based intervention with caregiver involvement can be a very valuable option. But whether a child’s best program is home-based, center-based, or a combination, there is room for advancement and enhancement of current programs, services, and outcomes.

Article written for Forbes.com.

In today’s health care ecosystem, the availability and quality of a field of services are dependent on insurance coverage. In the world of autism services, the tableau of insurance coverage is decidedly mixed.

Children with autism spectrum disorders are generally covered by health insurance for services they require, but not universally. All but two states require private health insurance to cover autism services. Other states may require limited coverage under mental health provisions. Federal employee health benefit plans cover ABA with prior approval and certain restrictions.

ABA is a critical piece

Because early intervention ABA programs are critical to successful treatment, this might sound like good news, and it generally is. Insurance coverage provides access to treatment for many families who could not otherwise afford it.

But it is a qualified success.

There are two major issues with insurance coverage for autism services. One is the amount or intensity of services funded. The other is quality.

As a group of genetic neurodevelopmental disorders, autism is not something to be “cured.” Treatment is optimal when it is intensive and sustained over many years. The best treatments available for those on the autism spectrum are rooted in the science of applied behavior analysis (ABA), a mostly one-on-one treatment approach based on understanding behaviors and how they are affected by the environment. ABA therapy is costly—though foregoing ABA therapy is far more expensive in the long run.

On average, ABA therapy costs $17,000 annually for a child on the autism spectrum, according to the Centers for Disease Control. For many individuals, this number is closer to $45,000-$100,000 annually. Many states mandate private insurance cover up to $36,000, with some as much as $50,000 annually. But others don’t.

The impact of insurers

Even when coverage is mandated, that may not be a panacea. One private insurer, with whom I have had numerous frustrating conversations, reimburses at rates no provider can accommodate without significantly reducing quality and hiring interventionists who are not well-trained. The rates are fabricated on minimum wage pay as a baseline, precluding the necessary growth of clinical skills in technicians and advanced educational training, not to mention any ability to invest in recruitment and retention of talent.  At this wage level, service providers are competing with companies such as Walmart or Starbucks for skilled ABA behavior technicians whose work with vulnerable children requires many hours of ongoing training and supervision to meet quality standards. This is not an easy job, often requiring many hours of commuting between clients’ homes and management of complex family issues.

What we are left with are employees paid as if they are unskilled and fungible while tasked with building the brains of our precious children, teaching them the skills critical to communicate, learn, and become functioning, independent adults.

Even more important is what health insurance covers. As you are likely aware, lacking a consensus in the industry about outcome measurements, insurance companies are stepping into the breach and dictating their own standards. Because insurance companies are just learning about ABA they generally have limited appreciation for the complexity of maintaining a good ABA therapy program, and this is distorting the provision of care.

Cutting corners and thinking short-term

Let’s look at an example. Many programs require providers to demonstrate short-term outcomes, such as whether a child can respond to their name, often ignoring long-term goals such as developing the skills to care for themselves as an adult. Insurance companies have a short time horizon because they are not likely to provide coverage beyond age 18. Their entire worldview with respect to children with ASD is narrowly focused on childhood. Not surprisingly, recent studies of adults with autism have revealed a distressing lack of personal independence and quality of life.

A recent court case against United Healthcare illustrates the issues our industry has with insurance. A U.S. District Court judge ruled the company adopted coverage guidelines for people with disabilities that focused more on its bottom line than on patient care.

The subject concerns all of us; not just those connected to people with autism. Many people on the autism spectrum have spectacular neurodevelopmental assets in addition to their deficits, and that potential is being wasted. In addition, each child with autism whose treatment fails to prepare them to achieve any kind of self-reliance as an adult will continue costing families and society between $1.4 million and $3.2 million over their lifetime. It is an immense waste of human potential, both financial and otherwise, and we all pay the cost.

Article written for Forbes.com.

One of the most persistent misconceptions about people with autism spectrum disorder is that they are automatons without emotion. This arises from the fact that autism is at its core a communication disorder. People on the spectrum often struggle to show emotion, which can give the impression that they are uncaring.

Studies have shown that people with autism can have even more capacity for feelings than neurotypical people but lack the ability to express them.

In fact, the desire to connect with others and build satisfying relationships is universal, even for those whose style of communicating is not typical.

For adults on the autism spectrum, dating and romance are fraught with challenges. Dating is a complex, abstract dance whose rules are sometimes irrational and difficult to understand. For people already facing difficulty communicating and reading social cues, it can be maddening.

In addition, some of the subtle social cues – and even some of the more overt – can elude an individual on the autism spectrum. They might not realize that it is inappropriate to pursue a romance with someone already in a relationship, or who has expressed that they are not interested, or who is in a teacher or caregiver role or is under 16. The result can be humiliating and confounding.

Movies, YouTube tutorials, and websites dedicated to dating and romance for people with disabilities like autism spectrum disorder proliferate on the Internet. Among the most searched autism-related questions on the web is about whether people with autism can get married. (Of course they can, and many do.) At UCLA, a program called PEERS teaches social interaction skills to teens and young adults with autism spectrum disorder.

Despite this, most autism services are aimed at early intervention. Very little formal treatment addresses the topic of dating and romance for people on the spectrum, even though this is an essential part of a happy life.

Because the young adults targeted by the PEER program think concretely, many of their lessons lay out step-by-step guidance for how to act in various situations, including dating. Covered topics include how to ease into conversation and establish rapport before proffering a date request, and how to smile an appropriately coy smile, rather than a toothy grin when flirting.

Many individuals on the spectrum have an aversion to touching, though this varies widely from person to person. For many neurotypical adults, it would be difficult to date someone unable or uninterested in physical displays of affection.

With Valentine’s Day right around the corner, let’s not forget that people with disabilities possess the same innate need for love – platonic and romantic – as the rest of us. They may just express it differently.

To read more about the challenges facing the autism services industry plus ways we can advance care and improve outcomes for these individuals, check out my book!