June 2020 – Ronit Molko, Ph.D., BCBA-D | Investment Consultant

June 30, 2020March 3, 2021

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

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.

June 30, 2020March 3, 2021

Home Healthcare & COVID-19

Latin American Doctor Checking Patient Infected Of Covid-19 At H

Covid-19 has upended life globally, but perhaps no more than for the elderly, children and disabled individuals receiving health care services in their homes, and for the caregivers themselves. Ten million Americans rely on home health services for such disparate health needs as speech therapy, autism services, wound care and personal hygiene.

For those over age 65, who comprise the overwhelming majority of Covid fatalities, the severe consequences of a deadly virus are exacerbated by the isolation it is imposing upon them. While families are sheltering at home together, homebound elderly are most often alone. Sheltering and distancing guidelines may be keeping friends and even family members from visiting.

Social activities, such as attending lectures, going to movies and playing Mah-Jongg with friends, have been curtailed. The result of this is social isolation that leads to an increase in mental health conditions such as anxiety, depression, and suicidal ideations. For those with conditions such as Dementia or Alzheimer’s, there is increased confusion and sadness due to the lack of comprehension and recall about the current situation.

The requirement to isolate and avoid going out makes medical care of the elderly and more fragile populations problematic. For example, while individuals managing health conditions such as diabetes or high blood pressure may be able to live relatively independently, going grocery shopping, obtaining medications and maintaining the activities that sustain health such as walking and exercise are much more challenging, if not impossible.

For those in residential facilities such as nursing homes and assisted living facilities, social distancing may mean being isolated in their rooms alone almost 24/7, with brief interactions from staff to receive food and medicine. The lack of mental stimulation, physical activity and social interaction are harbingers of mental health breakdown, to which the elderly are already more prone. It is sobering to consider that this is the punishment imposed upon prison inmates whose actions suggest they are a danger to others.

With recent changes to the Medicare program addressing the Covid crisis, many hospitals and doctors have pivoted to using telehealth and virtual appointments to see patients, which can address many issues and keep medical care current. Technical challenges are prevalent with many elderly patients struggling to use face-to-face telehealth platforms. Medicare is allowing individuals to receive services via phone, without the visual component, but this certainly has its limitations. Additionally, Medicare has revised the requirements for some coverage decisions, no longer demanding face-to-face visits and allowing patients to receive longer supplies of prescriptions.

Home health care agencies are deploying skilled care to homes for some services, but not others. For example, they are taking samples of body fluids for testing; however, the necessary physical examinations are lacking, assessments for memory loss and functioning are impacted by phone-only options and routine medical exams such as colonoscopies and scans are not being performed. This may result in increased health issues and illnesses down the road.

Meanwhile, health care providers are facing their own challenges. The Centers for Disease Control has issued guidelines for care that include daily temperature checks and personal protective equipment like N95 respirators and latex gloves. Many home health workers fear for their safety and the safety of their families should they bring the virus home with them.

While children appear to be less at risk from the virus itself – they comprise just 2% of confirmed cases in the U.S. and incur mild-to-moderate symptoms 90% of the time – children with significant healthcare needs face daunting challenges. Cloistered at home and without the support structure of school, they are now entirely reliant on their parents and those home care providers who continue to visit. Limited home care may mean health regression or the onset of new health challenges.

Home health care strategies have been forced to shift radically because of Covid-19 and new long-term approaches will be required as the ramifications of the virus linger beyond 2020 into the foreseeable future. For now, its effect on home care patients and caregivers has been profound – and the full extent of it has yet to be revealed.

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

June 30, 2020March 3, 2021

Coping with Stress in Unprecedented Times Part 2

In my previous post, I explored the tumult of unusual activity flowing into and out of our brains as a result of the novel Coronavirus and the worldwide response to it. The threat to lives and livelihoods, the near-total curtailment of social interaction and the departure from normalcy – all of these taken together are wreaking havoc with how we think and feel.

Worse yet might be the increased uncertainty that accompanies all this. 9/11 happened over the course of a morning. Pearl Harbor was a rallying point for action. While the devastating emotional and psychological trauma of these events can be lifelong, the events themselves were flashpoints—over in a matter of hours. We were able to begin picking up the pieces and take corrective action more immediately. With Covid-19, we’re stuck inside our homes living this new distanced reality, with serious economic impact for many, for who-knows-how-long.

As I noted in Part 1 (Blog Part 1), experts in the field of psychology and brain science empathize with the challenges our brains are facing but also remind us that we can use our brains in an intentional way to manage our thoughts and emotions to some degree and create productive habits. We can accept that this is the new normal until it isn’t, remain positive, focus on the good things in our lives, and divert ourselves with creative and meaningful activities.

For individuals with autism individuals, the calculation is somewhat different. Most autistics thrive on predictability and structure, and struggle with change, even changes many would consider small and inconsequential. Having their lives turned upside down, as they are now, falls somewhere between extremely distressing and catastrophic.

For caregivers of children and adults with autism, the need to perform “social distancing” is incongruous. Their services are, by definition, one-on-one and in person. As Leann McQueen, a residential coordinator for the Young Adult Institute in Brooklyn, told ABC News about her organization’s services to young people with disabilities, “People need assistance with personal hygiene. Even being asked to wash your hands can be more challenging.”

Christine Motokane is an articulate self-advocate to whom I spoke when conducting research for my book, Autism Matters. In her blog, Redefining Normal: A Young Woman’s Journey with Autism, she outlines some of the challenges she faces in this extraordinary time. Everything that is familiar to her has closed – her workplace, her favorite restaurants, other non-essential business – even the weekly outings with her support person have suddenly ended.

“I had to spend and celebrate my 28th birthday at home. All of these sudden changes coupled with the fluidity and ever-changing nature of this situation, has caused my anxiety to skyrocket,” she writes.

This is particularly worrisome because anxiety is often a constant state of being for autistic individuals who are hyper-sensitive to stimuli like light and touch. While “social distancing” has relieved many of those with autism of the anxiety about shaking hands or otherwise engaging in unwanted physical contact with others, and may be comforted by the six foot barrier others are maintaining, they must also confront a degree of exacerbated uncertainty that we all find discomfiting but those with autism may be traumatized by.

Autistica, the UK’s leading autism research charity, notes that autistic individuals react to uncertainty by avoiding such situations, by over-preparing for them or by gathering information that might reduce the uncertainty. None of these strategies is well-suited to this crisis because it can’t be avoided, over-preparing can lead to hoarding and gathering information about an unknown can just result in heightened anxiety.

The strategies that I enunciated in the previous post to manage anxiety about COVID-19 probably apply to everyone, inadequate though they may seem. Keeping as much of the normalcy in our lives as possible, creating a routine and some structure to our days and engaging in activities that enable some type of social contact can ward off some of the avalanche of change in our lives.

This reminds me of a story I came across in my research about maintaining the positive therapy momentum for children with autism during COVID-19. One mother, in an effort to keep life as normal as possible for her son, wakes him up at the usual time, has him dress in school clothes, maintains the entire morning routine, ushers him into the car and drives him around the neighborhood for 20 minutes before returning home for “school”.

Unfortunately, many parents have neither the time nor the bandwidth for such an effective regimen, innovative though it is. They are struggling to keep it together themselves, juggling work at home with the intrusions of family and a lack of respite from 24-hour-a-day demands of caring for children and keeping them constructively busy.

For situations like that, it’s important not to let perfection be the enemy of good. There is no playbook for a circumstance none of us has ever encountered before. Any steps families take, even small ones, like maintaining wake-up and bedtime routines, creating regular family fun time (playing games, reading books, etc.), exercising and dedicating time to learning daily, will all help to maintain a sense of routine and normalcy which will accrue to the benefit of all of us, adults and children alike.

Published By:
Ronit Molko, Ph.D., BCBA-D
Advisor to Investors in Behavioral Health