By Dr. Henry Roane, Vice President of Clinical Quality, Elemy
Autism Awareness Month was first recognized in April 1970. It wasn’t until over 40 years later in 2011 that advocates pushed to celebrate April instead as Autism Acceptance Month, which was meant to reflect the broader movement toward neurodivergence inclusion and allyship.
But I challenge everyone to go a step further – to go beyond just awareness and acceptance, because no one, autistic or not, should have to seek the approval of others. Instead, we should embrace April as Autism Appreciation Month, where we recognize, amplify and celebrate this special community.
So in recognition of Autism Appreciation Month, I want to talk about the main therapy used to support many people with autism spectrum disorder (ASD).
Much as our understanding and vocabulary concerning ASD have evolved over the years, therapy for neurodivergent children has now begun to shed some of its harmful practices of the past.
Before Applied Behavioral Analysis (ABA) became the standard of care for autism in the 1960s, clinicians supported behavior modification. But that approach sought to change how clients acted, without first learning how and why they acted.
However, traditional ABA hasn’t been the best fit for children with autism either. The approach was built on more than 100 years of behavioral science, linking back to well-established principles like Pavlovian conditioning, but it emphasized a very sterile interaction with clients.
When I was trained in ABA in the ‘90s, I was told to speak to children with autism in short, direct sentences. I was supposed to keep children seated during therapy sessions, and make them refrain from playing or speaking out of turn.
Obviously, that kind of therapy isn’t helpful for anyone, let alone children with autism.
That’s why many professionals, children and parents in this field are advocating for a more modern approach to ABA – what my company, Elemy, likes to call Advanced Behavioral Analysis. We think this term better reflects how, after 100 years, ASD therapy and our clinical expertise have evolved with the latest research, along with how we exercise care with empathy and incorporate technology.
Empathy and technology are two of the key pillars of Advanced Behavioral Analysis, an evidence-based approach that seeks to transform therapy for children with autism into an effective, personalized care system that embraces differences.
Researchers have found that physician empathy is linked to better healthcare outcomes. When a patient feels like their doctor cares about them and their health, they do a better job of maintaining their medical regimens, which can reduce complications.
That compassion-centric care model applies to therapy as well. A naturalistic activity or play-based approach, instead of keeping a child seated at a desk, encourages them to explore and interact with their surroundings. Whatever toy they pick up to play with is incorporated into the teaching session. Along with modernizing what therapy looks like, Advanced Behavioral Analysis also has different goals than traditional ABA.
Every child is a unique individual – they don’t need to be changed or made to conform. Certain behaviors that were targeted by traditional ABA, like avoiding eye contact or speech patterns, are no longer the primary areas of concern for all children with autism. Instead, the goal should be to minimize the barriers a child faces so they can have the best life possible.
That means therapy can look different for each child. Sometimes, it may be getting them ready for school by teaching new skills and enabling them to be more comfortable with social interactions. Other times, families want help addressing aggressive, dangerous behaviors.
We know that no one single approach works best for everybody. But by centering the child in their own care, the family is most likely to get the results they desire.
This reflects the belief that healthcare should be a shared, personalized experience. Rather than viewing doctors as experts that dole out instructions, clinicians and clients are allies – everyone has to work together to achieve outcomes. Families – and especially the child – should have a say in what outcomes are important to them.
The focus should be on fostering these trusting relationships between clients, their families and therapists. And, introducing technology is also a key modernization of ABA. Incorporating technology thoughtfully into care can help facilitate stronger clinician-client relationships by expanding access, encouraging communication, and strengthening accountability.
Strides in video conferencing software have made it easier for therapists to meet with clients virtually, meaning distance is no longer a barrier to care. Smalltown families can have access to quality experts across the state, thanks to virtual sessions. Technology also makes it easier for families to find the perfect therapist. You have far more flexibility when it comes to matching clients with staff.
And if families opt into in-person sessions, there’s a bevy of apps available that can be used to continue teaching skills at home that were introduced in therapy.
Technology also provides additional ways to improve the care model through easy-to-use client portals that can clearly show each of the agreed-up desired outcomes. Following each session, the child, family, and therapist can log their impressions of performance, so that each party works to keep one another honest and on the same roadmap. And in the not-too-distant future, we think data could be used to generate predictive models of therapy outcomes.
The opportunities to enhance care with technology are endless. However, we know that no amount of cutting-edge technology will make a difference in children’s lives without empathy. That’s why, during Autism Appreciation Month, we’re encouraging the perfect partnership between the two – so children with autism can have the best life possible, without being pressured to change.
We should all strive to celebrate everyone for who they are.