Uncategorized

I often find myself diving into the latest research to better understand the complexities of autism spectrum disorder (ASD) and how it affects our clients and their families. Recently, I came across a compelling study by UC Davis MIND Institute researcher Sally Ozonoff and the Baby Siblings Research Consortium that sheds light on the likelihood of autism in siblings of autistic children. The study found that siblings of autistic children have a 20% chance of being autistic themselves, which is about seven times higher than the rate in infants with no autistic siblings.

This significant finding is backed by a large, diverse group of families from research sites across the United States, Canada, and the United Kingdom. The study confirms previous research from 2011 by the same group, which found a recurrence rate of 18.7%, now slightly increased to 20.2%.

One of the most striking aspects of this research is the influence of the sex of the first autistic child on the likelihood of recurrence. If the first autistic child is a girl, the family is 50% more likely to have another child with autism compared to families where the first autistic child is a boy. This suggests genetic differences that could increase recurrence likelihood in families with an autistic daughter.

Moreover, the study found that a child with multiple autistic siblings has a higher chance of being diagnosed with autism (37%) than a child with only one autistic sibling (21%). This is particularly relevant for us as we consider the genetic and environmental factors that might influence autism recurrence in our client families.

The sex of the infant also plays a role. Boys born after an autistic sibling are almost twice as likely to be diagnosed with autism compared to girls. This aligns with the general observation that boys are diagnosed with autism about four times more often than girls. In practical terms, this means we need to be especially vigilant in monitoring the development of younger siblings, particularly boys, in families already affected by autism.

Another layer of complexity is added by factors such as race and maternal education level. The study found that non-white families have a higher recurrence rate (25%) compared to white families (18%). Additionally, families where the mother has a high school education or less see a recurrence rate of 32%, which decreases with higher levels of maternal education.

These findings are new and critical to replicate, but they mirror recent CDC data indicating that autism is becoming more prevalent in historically underrepresented groups. This reversal of a longstanding trend highlights the potential social determinants of health that could lead to higher rates of autism in certain families.

The researchers also tracked families who dropped out of the study, finding no significant difference in outcomes compared to those who completed it. This reassures us that the estimates of recurrence are reliable.

For us at the clinic, these findings reinforce the importance of closely monitoring the development of siblings of autistic children, especially in families with reduced access to care. Early diagnosis and intervention are crucial for improving outcomes. This study serves as a reminder of the importance of our work and the need to stay informed about the latest research to provide the best support for our clients and their families.

Introduction to Industry Changes

The therapy industry, notably sectors focused on autism and behavioral disorders, has undergone significant transformations over the past decade. Applied Behavior Analysis (ABA) therapy, a critical intervention for autism spectrum disorders, has seen particularly intense change. This transformation has been fueled largely by the influx of private equity investment. While the industry grows, the essential focus on patient care is often overshadowed by profit motives. This blog post examines the consequences of these changes, particularly how they affect service quality and accessibility in ABA therapy.

Rise of ABA Therapy

ABA therapy is rooted in a methodical approach that encourages positive behaviors in individuals with autism through reinforcement strategies. As autism diagnoses have increased—current data suggests 1 in 36 children in the U.S. are diagnosed—the demand for specialized services like ABA has surged. This therapy is not only popular but also expensive, with costs potentially reaching $60,000 per year for intensive interventions, which are often covered by insurance and Medicaid.

The Attraction of Private Equity

Private equity firms are attracted to the therapy industry by the promise of steady, insurance-funded revenue streams. Their typical strategy involves buying companies, optimizing operations for cost-efficiency, and selling them at a profit. However, this often results in cost-cutting measures that can compromise the quality of patient care.

The Case of CARD

A poignant example is the Center for Autism and Related Disorders (CARD), which was acquired by Blackstone in 2018. CARD, once a thriving network with 265 locations, filed for bankruptcy by 2023 after closing 100 centers. This dramatic shift left many families without services, disrupting the care of vulnerable children like Javier Bautista, whose story of disrupted therapy highlights the human cost of these corporate strategies.

Financial Strategies and Their Impacts

Private equity’s model typically loads acquired companies with debt, betting on aggressive growth strategies. For CARD, this meant expanding services without a proportionate investment in staff training or retention, which diluted the quality of care. When revenues did not meet expectations, especially during the COVID-19 pandemic, the financial structure became unsustainable, leading to cutbacks and closures.

Effects on Staff and Service Quality

The influx of private equity has also affected the workforce within the therapy industry. There is often a push to increase the caseloads on staff while reducing supervision and ongoing training, which can lead to burnout and turnover. This diminishes the quality of care and undermines the therapeutic outcomes for patients.

Regulatory and Ethical Concerns

The operational changes driven by private equity raise significant ethical and regulatory concerns. Instances of inappropriate treatment strategies, as reported in J.J.’s case, where techniques used were deemed provocative rather than therapeutic, highlight the potential harm to patients. Such practices have led to legal actions and calls for tighter industry regulation.

The Broader Impact on the Healthcare System

The strategy of maximizing short-term profits is not isolated to autism services. Studies across healthcare sectors have shown that private equity-owned facilities often see worse patient outcomes. This is attributed to understaffing, reduced spending on patient care, and an emphasis on financial metrics at the expense of service quality.

Pushback and Reform

There is growing scrutiny of private equity’s role in healthcare. Recent investigations by federal agencies and academic studies suggest that these investments might prioritize profits over patients, prompting calls for regulatory reform. Proposals include setting minimum staff-to-patient ratios and enhancing transparency in ownership and financial operations.

Advocacy and the Role of Families

Families and advocates are becoming increasingly vocal about their experiences and challenges. The story of J.J. and his mother withdrawing him from CARD following poor treatment practices is just one example of the increasing pushback against the perceived commodification of care.

Rebuilding Trust and Quality

In response to widespread criticism, some original founders, like Doreen Granpeesheh of CARD, have stepped in to buy back and stabilize their organizations. Their focus is on restoring trust and prioritizing clinical quality over financial gains. This shift back to a more care-focused model is seen as critical in rebuilding patient and community trust.

The Future of ABA Therapy

Looking ahead, the therapy industry, particularly ABA, stands at a crossroads. Will it continue to be driven by investment firms looking for high returns, or can it return to its roots of patient-centered care? The answer will depend largely on the actions of policymakers, the advocacy of families, and the ethical stance of the industry’s leaders.

Conclusion: A Call for Balanced Approaches

The need for a balanced approach that respects the financial realities of running large-scale operations without compromising on the quality of care is essential. The therapy industry must navigate these complex waters with an eye toward ethical practices, regulatory compliance, and, above all, the welfare of its patients. As stakeholders reassess their strategies, the hope is that they will prioritize long-term sustainability over short-term gains, ensuring that services like ABA remain available, effective, and patient-focused.

As a school psychologist with a penchant for humor (but always keeping it professional), I’ve stumbled upon some findings that’ll make you sit up in your swivel chair. Picture this: a world where “school distress” is more than just forgetting your lunch money. In the latest scoop from the UK, a study has thrown the spotlight on the not-so-funny reality that kids with autism spectrum disorders (ASD) are facing a tougher time at school than trying to dodge dodgeball.

Sophie Connolly and the gang dove deep, gathering intel from 947 parents who are pretty much experts on the frontlines of school distress. And get this: a whopping 92.1% of the kiddos feeling the school strain are waving the neurodivergent flag, with 83.4% on Team Autism. On the flip side, the “chillaxed” group at school had only a 16.8% showing from the autism squad. Turns out, our autism team members are hitting the distress button earlier and it’s sticking around longer than unwanted gum under a desk.

Now, for a twist more surprising than a pop quiz on a Monday, sensory processing hiccups and the ever-zoomy ADHD are also crashing the distress party. And let’s not forget about the gatecrashers: anxiety and a knack for avoiding demands like they’re the last pick for the sports team.

Here’s a thought that might just ruffle some feathers: the majority of our school-distressed crew are braving the wilds of mainstream education. So, it begs the question – is the one-size-fits-all approach to schooling more outdated than my old flip phone?

Diving deeper, this study didn’t just stick to the kids already in the autism club; they cast a wider net to include those on the waiting list. Because, let’s face it, waiting for an autism diagnosis in the UK is longer than the line for the newest roller coaster.

In wrapping up, the study’s masterminds are calling for a tag team effort with the neurodivergent VIPs to rewrite the rulebook on education. Because if there’s anything we know, it’s that understanding the unique ways these brilliant minds learn is no laughing matter (though a chuckle now and then doesn’t hurt).

So, from my corner of the school, armed with a diploma and a dad-joke arsenal, let’s navigate these classroom conundrums together. After all, isn’t education about making sure every kid can find their place in the schoolyard sun?

It’s with a bittersweet twinge that I share the passing of an individual who has profoundly influenced my professional and personal journey, and the autism community at large. Donald Triplett, fondly remembered as “Case 1” in the annals of autism diagnosis, left us last Thursday at his home in the quaint city of Forest, Mississippi. At the ripe age of 89, he transitioned to the next journey, leaving behind a legacy of enlightenment, acceptance, and resilience.

Donald, or Don as we affectionately know him, battled cancer until the end, according to his dear nephew, O.B. Triplett. Yet, his spirit continues to illuminate the corridors of autism understanding and awareness. Over the years, autism diagnoses have seen a steep rise – a change from one in 110 children in 2006 to one in 36 this March, according to the CDC. The reasons remain an enigma, stirring ample debates. But one irrefutable fact is that our understanding of autism today is deeply rooted in Don’s extraordinary life journey.

Born on September 8, 1933, Don was the beloved son of a high school English teacher, Mary (McCravey) Triplett, and Beamon Triplett, a Yale Law School-educated lawyer. Early on, Don’s world seemed tangential to those around him. His interactions or lack thereof with others, his unique language use, and his repetitive behaviors were at first a mystery to those around him.

Yet within this unique realm of Don’s, he displayed skills that left everyone in awe. His remarkable mathematical prowess, his innate musicality, and the rumor that he calculated the number of bricks in his high school facade by mere glance highlighted his unique brilliance.

In a bid to understand their son better, Don’s parents sought the expertise of Dr. Leo Kanner, a renowned psychiatrist at Johns Hopkins University. Don’s parents’ persistence and Dr. Kanner’s insights changed the narrative not just for Don but for millions on the spectrum. Dr. Kanner, in his 1943 paper, outlined the characteristics of this unique condition based on observations of Don and ten other children. Don became the inaugural case, the first among many who would later find their experiences encapsulated in the term “autism spectrum disorder.”

As Don grew older, his idiosyncrasies remained, but his life took an empowering trajectory. He graduated high school, earned a degree from Millsaps College, learned to drive, secured a job at the local bank, and even traveled the globe on his own. This narrative of growth, resilience, and acceptance paints an empowering picture for all those touched by autism.

It’s impossible to ignore the role that Don’s family’s resources and societal status played in his life’s trajectory. But equally significant was the warm embrace of his hometown, Forest. This community of 3,000 made a conscious decision to welcome this unique individual, to accept him with all his eccentricities, and to celebrate his strengths. They saw beyond the autism to the person that Don was – loving, talented, and remarkably resilient.

Don leaves no immediate family behind, but a band of friends who joined him for morning coffee, neighbors who invited him for golf tournaments, and a community that stood guard over his well-being. They saw him for who he was – a math wizard, a musical savant, and their own beloved guy.

As we mourn Don’s passing, we also celebrate his life. His journey has illuminated a path for countless individuals living with autism, and for that, we remain forever grateful. His legacy remains a testament to resilience, acceptance, and the power of a supportive community. And as we carry his memory forward, we also carry his message: that each person, no matter their idiosyncrasies