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Author: Ronit Molko

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

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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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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
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Coping with Stress in Unprecedented Times Part 2

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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

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Coping with Stress in Unprecedented Times- Part 1

Hypochondriac Concept Disease Panic Of Outbreak Anxiety And Hypo
By Ronit Molko, Ph.D., BCBA-D

Pity your brain. This unprecedented epoch we are experiencing is playing havoc with our most vital organ, the one that is designed to act as the air traffic controller of our bodies during the impenetrable fog of a lockdown.

Our brain through our nervous system is constantly evaluating and detecting risk with the ultimate goal being safety. This occurs at a primitive level within our brain without our conscious awareness. The primary element that challenges safety and stability is uncertainty. The brain is wired to detect fear and we have an overwhelming amount of fear-generating information right now.

COVID-19 has brought the world to its knees. First, there is the physical threat of a virus that is undetectable and about which we are learning as it unfolds. Second, is the constant mental anguish caused by the uncertainty about the future, even about tomorrow.

As a result, we are seeing extreme levels of stress, anxiety, and incremental  increases in depression and addiction. The tidal wave of negative information and emotion creates a continuous brain hijack (as the brain works to manage this threat) and overwhelms our cognitive processing. This stress keeps us in a fight or flight state, affecting core brain capacities such as thinking and decision making. Hoarding of supplies and increased aggression in people are some observable results of these affected capacities.

So if you are feeling stressed, anxious, and exhausted, it’s completely normal under these circumstances.

Jump To Acceptance

In fact, Dr. David Kessler, who collaborated with Elisabeth Kübler-Ross on her treatise, On Grief and Grieving, says that what many Americans are feeling is grief. He says we have lost our normalcy, our future plans and our connection to others, ironically in a collective grief experience.

Worse yet is the uncertainty that imperils not just our health but our financial stability. We don’t know when this catastrophe will end – could this go on for six months, a year? – and that is flooding many of us with anxiety. Dr. Kessler calls this “anticipatory grief.”

Dr. Kessler recommends that we consider the six stages of grief that his co-author famously enumerated and jump as quickly as we can to acceptance. “We find control in acceptance: I can wash my hands. I can keep a safe distance. I can work virtually,” he told the Harvard Business Review.

Four Strategies to Tame Stress

Dr. David Whitehouse, the psychiatric medical director for Able To, a leading provider of virtual behavioral health care, told the Total Brain podcast of four keys to confronting the anxiety sparked by the COVID-19 crisis.

He recommends we identify what we are feeling; avoid catastrophizing, i.e., steer clear of talking ourselves into depression; focus on the positive; and engage our creative right brain.

We have about 50,000 thoughts a day, that’s 2,100 thoughts an hour.

Positive thinking has long been known to improve our overall outlook and boost our performance. Barbara Frederickson, a psychology professor and researcher at the University of North Carolina, has demonstrated that positive thinking opens us to more options than does negative or neutral thoughts. Rather than wallowing in negative thoughts and emotions, simply reminding ourselves that this situation is temporary can have significant salutary effects physiologically and emotionally.

“You can, in fact, drive that negative analytic off the table,” Dr. Whitehouse says.

Physical exercise is an elixir for stress as well. Pushing ourselves physically focuses our attention on the moment and boosts our depression-fighting endorphins. In fact, exercise is often prescribed for patients with mild to moderate clinical depression.

Deep breathing has a similar impact on us physically. It stimulates the vagus nerve, which acts as a crossing guard at the corner of flight and flight. By calming the fight or flight response, the vagus nerve allows our body to relax and our vital signs to settle back to normal. Research shows that our heart can synchronize with our breathing, so that reduced respirations produces a slower heart rate and lower blood pressure.

People who struggle with anxiety often feel that their lives are out of control. In fact, many who struggle with anxiety attempt to control every facet of their lives; when their plans fail, anxiety often comes back with a vengeance.

A relatively simple way to overcome this problem is to establish a routine. Setting a schedule and applying some self-discipline to stick with it allows us to control our daily activities to the extent possible. Adding this structure to daily living can also unlock additional free time to enjoy other things.

There is also one common sense measure we can all take to avoid driving ourselves crazy: limit our exposure to the news. At this point, there isn’t much new to learn about COVID-19 other than that we must isolate ourselves, wash our hands and practice social distancing. All the speculation about how much worse it will get or how long we must wait for normal life to resume, or for the new normal to unfold, produces anxiety without insight. So in this time, limiting exposure to news and information is self-preservation, and while I wouldn’t ordinarily recommend this, less information means more peace of mind.

What these prescriptions have in common is that they are under our control. If we commit to accepting the current circumstances, thinking positively, challenging our bodies and minds, avoiding the news and simply taking a deep breath, we can calm our brains and reduce our psychic pain.

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Why Businesses Should Care About ADA Website Accessibility

Following up on my previous post about the relationship between technology and autism services, I want to revisit my discussion with Daryn Harpaz, an ADA website accessibility and compliance consultant and CEO of ZenythGroup. During this extraordinary time of sheltering in place due to COVID-19 , it is particularly pertinent to focus on the accessibility of technology, which is powering all of our online interactions.

More than ever, the services available on websites must be accessible to everyone, including those with disabilities, now that online platforms are our primary method of communication and commerce.

Daryn and I discussed the current state of affairs with respect to online accessibility issues for disabled individuals, which I have noted as merely the tip of the iceberg in the urgent question of inclusivity in the Internet age.

You can read Part 1 of my review of that discussion in which Daryn revealed that it does not appear that businesses generally have prioritized accessibility of their websites, and that has cost them in terms of brand loyalty, sales and litigation. On the Federal level, a lawsuit is filed every hour against businesses whose services on the web are inaccessible to the disability community.

“We’re looking at 15% of the world’s population with a disability – that’s over a billion people, of which 61 million are in America,” Daryn notes. This is a massive cohort to write off. Excluding those with age-related issues, individuals with disabilities purchase half-a-trillion dollars in goods and services annually. They are also fiercely brand loyal to businesses that cater to their needs, and now businesses are finding that they are also willing to use the courts for relief. Losing their support is a colossal missed opportunity and—in those cases in which legal action is involved—can be very expensive to defend.

Target discovered the pain of ignoring the accessibility issue when it paid an estimated $10 million in fees and remediation to settle a lawsuit filed by a prospective customer who could not navigate its e-commerce platform. That says nothing of the loss of brand equity the company suffered, particularly in the disability community.

The business imperative tends to spur businesspeople to act, and so Daryn reminds them that, “more than 85% of websites that are visited do not provide an inclusive experience. And we know that over 80% of people with disabilities say that they would return to a website if it was accessible and they would shop more often and support that brand.”

ZenythGroup offers businesses critical services to help them achieve full digital accessibility and remain compliant with the Web Content Accessibility Guidelines (WCAG). After manually auditing websites and online platforms by using people with disabilities to provide real-world testing, the firm provides corrective measures to meet WCAG best-practice standards. Thereafter, he says, compliance is a critical, ongoing need because websites are fluid and require continual monitoring.

Ultimately, this is a problem not of technology, but of the heart. Here’s how Daryn put it:

“If you are, as a business, catering to society, regardless of ability, you’re going to succeed as a company. And if a business owner could meet, engage or otherwise interact with the disability community, I believe that they would see the human aspects of this and want to do better. It shouldn’t have to be under the requirements of a lawsuit or the threat of penalties and fees to want to do better. Instead, we should be enabling our community from a social aspect to be integrated and inclusive. And I think that says a lot about where we need to move in the direction of disabilities in general.”

It’s worth mentioning that a myriad of accessibility widgets and overlay solutions are now available on the Internet for download and claim to offer an easy-fix. However, being that these widgets are automated, they miss the majority of WCAG issues and are often confusing and challenging for people with disabilities to interact with.

While overlay solutions can play an initial role in providing a short-term patch, this band aid approach will only deliver minimal accessibility. Core WCAG issues must be resolved via manual testing, code remediation and continuous accessibility best-practices.

Daryn reminds organizations to work with a reputable accessibility company that can ensure your organization achieves and maintains ADA compliance with hands-on feedback from the disability community, ongoing manual testing, and a mature process that mitigates risk.

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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How AI Can Transform the Autism Services Industry

How-AI-Can-Transform-the-Autism-Services-Industry

Imagine providing parents with an app that enables them to upload videos of their children, analyzed by computers applying algorithms to diagnose autism earlier in their development than currently possible.

Imagine equipping autistic individuals with smart glasses that whisper instructions for navigating social situations in the user’s ear.

Imagine two-foot-tall humanoid robots that could serve as therapists for use in treating children with autism.

Artificial intelligence (AI) has made all this possible today. AI, equipped with machine learning, is improving constantly, and is positioned to become a critical adjunct to the human element in the diagnosis and treatment of autism. The operational and clinical advantages these advances convey are creating added value propositions for those enterprises that embrace it.

AI Disruptors in Other Industries

The ground for these paradigm-shifting advances has been well-trod in other industries. Consider how Waze disrupted the navigation business less than a decade ago. When other mapping apps stumbled to diagnose traffic jams and redirect travelers, Waze crowd-sourced traffic reports and provided real-time data about traffic incidents, speed limits, speed traps, and other valuable trip information to navigate the fastest possible route. As a result, the navigation app captured market share from Google, Mapquest, and other providers, with 25.6 million monthly users by 2018.

Waze has exploited that unique value add by establishing a ride share component that allows users to find, connect and ride together at a fraction of the cost of Uber and Lyft, themselves industry disruptors. Waze is also being accessed by governments and researchers seeking real-time data collected by its users. In Israel, researchers are asking Waze users to report roadkill, so they can track animal collisions and reroute animal movements to avoid them. The city of Hampton Roads, VA is mining Waze traffic data to determine where flooding is most acute as they develop their flood maps.

The Story of AI in Autism Services

The frame-breaking opportunities are similarly ripe in the autism services industry.  The platform created by Cognoa, a Palo Alto-based pediatric behavioral health program, uses machine learning and predictive analytics to analyze parent input of behavioral information to diagnose autism earlier. This allows intervention and customized education to begin in the critical early years of a child’s brain development.

Another AI solution developed by Brain Power, helps autistic individuals manage their emotions with a wearable digital coach that recognizes social situations and guides the user towards appropriate responses. This facilitates increased functional independence, also enabling some to interact more effectively in a standard workplace setting.

Monitors and wearable devices can also deliver a plethora of health, activity, and geographic information about clients in real time. With some analysis, staff could correlate patient meltdowns with changes in physiological ratios such as a spike in blood sugar levels, increased heart rate and sweating.

As an example, for individuals whose sugar intake is correlated with aggression, making dietary changes and collaborating with parents to monitor sugar and carbohydrate intake could reduce the frequency of outbursts and the required interventions, and would improve client outcomes and quality of life.

AI’s Impact Is Clinical and Operational

The business imperative for artificial intelligence covers the operational aspects of the autism services business as well. Employing this new business intelligence would enable service providers to tackle issues such as scheduling in a more targeted manner. If traffic on Friday afternoons in one location is causing sessions to start late, for example, modifications can be made to maximize session time.

This avoids the current practice of implementing policy and process changes across the board that may have negative impacts on service delivery in a different location where Friday afternoon traffic is not an issue. It is an ongoing process: continuing use of these tools could help determine which modifications were working and whether they were creating cancellation bulges elsewhere in the schedule.

The artificial intelligence that drives these revelations is the business imperative of the future of autism services, if not the present. It will eventually be a normal part of every autism service enterprise, as it already is in many industries. The early adopters will exploit a market inefficiency to deliver services that their competitors lack.

Article written for Forbes.com.
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Wiring the Growing Brain: How Habits Shape Brain Development in Youth

Portrait Of A Young Woman With Colorful Cogwheel Brain Above Hea

The brain is a complex and wondrous organ whose basic structure is a web of electrical impulses. The early journey of brain development is vital to its functioning for the rest of its owner’s life.

Brain development begins in utero and isn’t complete until roughly age 25. A baby is born with 85 billion neurons, or nerve cells, that transmit these signals to other neurons through synapses. A web of interconnected neurons is called a neural network and is crucial to the brain’s function.

The Role of Neural Pathways

Neuroscience research has determined that the most critical ages for brain development are zero to six, when the brain is building and reinforcing the neural connections that will last a lifetime. Each new encounter a baby has with their environment through the five senses creates new neural pathways, with repeated encounters strengthening those connections. Neural pathways that are not reinforced in this manner are literally culled by the brain in favor of others. Hence the phrase “neurons that fire together, wire together”.

Because babies’ brains are in the acquisition phase, this is the critical time for positive brain stimulation. Research shows that early brain stimulation leaves positive fingerprints on the brain throughout life.

The brain also favors encounters that bring pleasure. When babies’ needs are met and expectations fulfilled, their brains are stimulated to perform optimally. When babies endure persistent negative experiences, their emotional and social development suffer, as does the ability to learn and develop language. For these reasons, early childhood experts encourage new parents to talk, sing, smile at, read to their children as much as possible; to hold, hug and snuggle with them often; and to turn everyday moments into teaching moments.

The Autistic Brain is Different

Recent research suggests the brains of autistic children are different. Their brain cells are hyper-connected, with many more neural pathways than neuro-typical children have, particularly in the area of the brain that affects sight. The more severe the symptoms of autism, the more hyper-connected the brain. These excess connections appear to be the result of a deficiency in the culling process. The brain of a neuro-typical two-year-old begins weeding out roughly half the synaptic connections it has produced. The brain of an autistic two-year-old eliminates only about one-sixth of the synaptic connections, leaving what might be understood as clutter in the brain. These remaining pathways amount to a neural overload – akin to the sensation of attempting to drink water out of a fire hose.

“Our findings suggest that the imbalance of excitation and inhibition in the local brain circuits could engender cognitive and behavioral deficits observed in autism,” said Vinod Menon, Ph.D., a Stanford researcher who co-produced the research.

The Importance of Early Detection and Treatment

This breakthrough research finding may lay the groundwork for early detection of autism and improve diagnosis and treatment. Because the brain is so plastic – able to adapt, re-wire and create new neural pathways – earlier treatment can establish new and stronger neural connections, behaviors and skills. Evidence suggests that diagnosis and treatment starting by age three confers lifelong benefits on autistic children.

The optimal time for intervention is before the second major culling period in adolescence. For children with developmental and learning disabilities, reinforcing the pathways that lead to constructive behaviors and skills must be accomplished before those synaptic connections are erased for lack of use. Stimulating the brain with positive skills and behaviors before the culling period reinforces helpful synaptic connections and allows unhelpful ones to move to the head of the line for pruning.

In this way, it becomes evident that brain performance is neither all nature nor all nurture, but a combination of genetics and experiences working together. Engagement  and contemporary, early intervention can support autistic children in learning the skills critical to leading fulfilling lives as independently as possible.

Train Your Child’s Brain

One method of re-training your child’s brain: select one simple task and practice it 10 times daily. Observe whether your child is able to complete the task faster each time. Optimize your child’s brain development by engaging with them verbally and visually during regular daily activities like playing, diaper changing, feeding and bathing.

Examples of simple instructions include “drink from the cup,” “give me that book” or “show me the train ” Opportunities to practice these one-step tasks abound during the day. For autistic children, just as for neuro-typical children, perhaps even more, everyday moments can be teaching moments. Additionally, for children determined to be at risk for a developmental disorder, early intervention is critical to capitalize on the brains’ plasticity.

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