Parents Can and Should Be Active Participants in Autism Therapy

The numbers today are startling. Autism cases are on the rise and capable therapists are in short supply. It’s unfortunately all too easy to subscribe to a doom loop of poor patient outcomes for millions of American children. 

But for parents who participate in caregiver training, that picture is dramatically improved. Those caregivers who learn how to reinforce the skills taught by Applied Behavioral Analysis (ABA) professionals have been shown to help their kids learn and advance faster than the norm. Providers can help support this concept of caregiver training and these accelerated gains by helping families understand the options available to them and how best to engage with clinicians. 

An urgent gap in autism care 

Earlier this year, a new study from the Centers for Disease Control and Prevention (CDC) found that one in every 31 children is diagnosed with some form of autism today. That’s an increase from one in every 36 just a few years ago. And, it’s a shocking jump from the 1980s when four in every 10,000 people were being diagnosed. 

While these numbers have spurred some to chase down reasons why, the answer is fairly mundane. As clinicians, we’ve broadened our definition of autism and gotten much better at identifying individuals earlier who need support. So, the numbers were likely always higher; our methods are just catching up to that reality. 

Regardless of why we have more cases, the more pressing question is how we should address the dramatic increase in support needs. While the number of providers certified by the Behavior Analyst Certification Board (BACB) has increased roughly 60% over the last five years, this growth has been outpaced by the stark demand for providers.

The result of this demand-supply mismatch is that many patients have to wait up to nine months, and some for more than a year, for their first appointments. And those appointments often occur at centralized clinics that require long commutes and are only available during hours that conflict with most families’ day jobs. 

Parent participation works 

Fortunately, two emerging trends have the potential to reverse this gap in autism care. The first is the powerful impact of caregiver training. This is the idea that parents or others can be trained to make accommodations within the environment to better support their child, to create learning opportunities during day-to-day activities to foster learning, and to effectively reinforce skills so they maintain over time. It makes sense because caregivers are with their children 24/7 on the front lines and are invested in their success and thus the success of the home environment. 

This approach was validated by a 2022 Brigham Young University study of 2,895 children published in the Journal of Autism and Developmental Disorders that found children of parents who provide interventions at home “saw marked improvement in social skills as well as language and communication skills.” On average, the parents in these studies received about 90 minutes of caregiver training each week. 

The second factor contributing to the success of caregiver training is the rise, and acceptance, of virtual therapy stemming from the pandemic. The normalization of telehealth and the power to engage with therapists from the home and on days and hours that are convenient to the family is enabling more training for parents and helping better equip them to support their child’s development. 

Caregiver training considerations

For those families interested in or considering caregiver training, clinicians can help them understand three key options.

First, caregiver training can be conducted in an in-person setting or as part of a virtual therapy model. For those parents more comfortable with or whose learning style benefits from face-to-face interactions, an in-person clinic is likely a priority. For those short on time or who value flexibility in scheduling, or those who are unable to drive to a clinic, virtual therapy poses a unique and substantive option. Virtual therapy has the added benefit of occurring within the home where parents can practice skills in the same environment where they’ll be interacting with their children while still under the guidance of a therapist. Plus, virtual enables more direct care opportunities because the therapist is unburdened by administrative needs, commuting or other obligations. 

Another consideration is the scope of the training. Some families may choose to focus on specific areas, such as toilet training, which leads to more targeted, shorter-term instruction centered on that one goal. Others may opt for a more comprehensive program that tackles a wider range of developmental areas simultaneously — like communication, behavioral regulation, and social engagement. Providers can help guide families in choosing the appropriate course of training based on their history of engagement with a patient and through a mutual prioritization of desired outcomes.

Lastly, there is an option to involve siblings or other family or household members in caregiver training. This could be as basic as having a sibling write a story for their brother or sister with autism to better understand their needs or how to communicate with them. It might also involve direct teaching so that a sibling can learn and practice how to assist their brother or sister with rolling a ball or other activities. Again, providers likely have some insight into which is appropriate based on interactions with families and patients.

Questions parents can ask 

It’s important that clinicians understand the start of training can still be intimidating for families. The recommendations clinicians make can be uncharted territory for caregivers. Providers can help make this less daunting by encouraging parents to ask questions throughout their training. 

Here are a handful of questions that we’ve found parents can ask to engage therapists and reinforce lessons or skills. Sharing them proactively with parents can make for more comfortable interactions and more rewarding sessions for families and therapists alike. 

• Can you explain to me why you did (insert action/behavior)? 
• How do you recommend I respond when (insert action/behavior) happens? 
• What do you think is going well in our sessions and what can be improved? 
• I’d love to learn more about the science behind ABA. 
• What’s one simple strategy I can try this week that might make a difference?
• Do you have any additional resources or source of information for (insert skill/behavior)?  

The future of autism support 

As autism awareness increases and more families seek support, the power and benefits of caregiver training will only gain more widespread adoption. Providers can both encourage parents to consider this path for their family and be open to working with parents who request it. This unified, team approach to treatment can help reverse autism therapy trends in America and do better for our children and their families. 

Photo: PeopleImages.com, Getty Images

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