At last month’s Applied Behavior Analysis International conference, people were talking about autism treatment and billing controversies in formal sessions and around the water cooler. The New York Times spotlighted the trouble for families living with autism, especially for those receiving services based in applied behavior analysis. One source summed it up: the science is beautiful, but the industry is ugly.

The autism field has known about these problems for a while. The business grew with little government oversight or regulation. Private equity owns some clinic chains now. The Office of the Inspector General is auditing Medicaid payments for autism services. The first round of audits (in Colorado, Maine, Indiana and Wisconsin) found many improper payments. Federal officials announced that they will audit more states. Medicaid opportunists seem to have found a new fishing hole to drain.

Families advocated for years for autism services. The partial or complete loss of payment assistance is a clear and present danger. While these battles rage, families living with autism still need help. No doubt, some parents read the news and came away with questions they never thought they’d have to ask their child’s provider. For some, the answer will be devastating: their child is out of school, receiving expensive babysitting masked as a program and with little hope of meeting their child’s long-term, educational needs.

Living with autism: what to know, who can help

Responsible and Responsive Parenting in Autism: Between Now and Dreams, 2nd ed.

When Shahla and I sat down to write our book, Responsible and Responsive Parenting in Autism: Between Now and Dreams, we knew these questions were out there. Parents might need more information, and more confidence in their own observations, to keep autism services on the right track. They still hold responsibility for their child, and they have the power to steer treatment—even as experts do their expert thing. In our book, we laid a foundation within the first few chapters, explaining in clear language what good science, services, and collaboration look like, how to spot trouble, and how to fix it, including how to leave if it becomes necessary.

To make it relatable, we likened a good practitioner, using evidence-based strategies, to a chef preparing master recipes. Not only does the practitioner understand the science of what they are doing, but they also understand the conditions they are working under. A successful practitioner continually adjusts their teaching with the child, just like the chef that adjusts their preparation of the ingredients. Practitioners will assess each child, talk to the family, and learn about their lives. Good practitioners know the short- and long-term goals. They design programs for each child. A good practitioner will implement the intervention, monitor, and tweak the program until it works. In addition, the child and everyone around them will be happy with the program and the progress.

In inexperienced hands, a proven recipe can get poisoned. And any therapist can still end up with a poor outcome if they are expected to deliver services under poor conditions. We outlined some of those conditions:

The practitioner had no mentor.

A practitioner who hasn’t seen the recipe modeled or the outcomes of a master practitioner has no idea what they are aiming for. They haven’t witnessed dramatic change in a child. They don’t know how the timing and sequencing of reinforcers work. Because they haven’t seen success, they have no idea what is possible for our child. They have no one to imitate. Their expectations and our child’s outcomes remain minimal.

The practitioner doesn’t set up the environment for success.

They don’t understand the basics of motivation or how to arrange the teaching environment to work with our child. This can be hard to spot, but if we see therapists restraining our child in coercive and punitive ways or just letting our child wander, they probably don’t know how to arrange an environment for learning. We all behave differently in different environments. Progress depends on what is required of us in each environment and how we feel about those requirements. That’s no different for our child.

They start without an assessment of where our child is and the environment around them.

They don’t know our child’s preferences, current skills, meaningful environments, or any of the possibilities for the child or the environment. Before designing a program that helps our child play with other children, for example, a skilled analyst will observe and know whether our child  is looking at and watching other children, whether they are approaching other children, whether they share interests and a play repertoire with other children, whether they can shift their play activities around other children, and more. The unskilled analyst, however, won’t do this kind of assessment. They won’t be able to select goals that are grounded in the child’s needs. They won’t start where our child is, and they won’t take them where they need to go. They won’t assess the child across meaningful environments or work toward a graceful balance of changing the environment and the child for progress. Again, this may be hard to spot, but if our child is being taught with the exact same program as every other child, that’s a troubling sign. In the worst cases, our child will learn ways to escape the subpar teaching situation, and some of those escape techniques can be disturbing or hurtful to their well-being.

They don’t have the right support combinations.

If the assessment is right, then our child will require increasingly less support to learn, and the help, such as prompts, can be removed. If what our child learned depends on eternal prompts, the recipe isn’t working. In the example of learning to play with others, our child’s foundation for learning stands on rickety stilts when the analyst must always recruit the other children and continually shift our child’s play activities every time a play session begins. That said, the rules about prompts aren’t hard and fast. A skilled person knows how to balance such potential dependencies with desired outcomes, weighing both with our child’s well-being.

They are not responsive to our child.

Almost everything about behavior analysis relies on observing the child’s response—both their emotions and skills, followed by the clinician’s impeccable timing and fluent responses to keep the happy learning going. If the practitioner does not have command of these techniques, they will get less-than-favorable results. Remember the baker who understood how to whip the butter, sugar, and eggs for the lightest pound cake? A behavior analyst with fine-tuned sensitivity to our child and deep understanding of reinforcement can use what they know to produce exquisite behavior change.

They don’t make alterations or substitutions based on conditions.

When conditions change from the protocol, they don’t know how to change what they are doing, respond to our child differently, or alter the materials or the environment for success. They can’t solve problems that emerge without warning or handle variations not accounted for in the recipe. A good cook who understands food chemistry and has sensitive taste buds can respond to conditions and make substitutions. When a good behavior analyst understands the mechanisms of behavior change, has seen strong outcomes, and loves happy learning, they will usually work to solve problems until they achieve progress. When an essential ingredient is missing, both the cook and the behavior analyst expect a bad outcome and know that they must adjust to a different recipe.

They don’t have a community of both peers and masters to support their continuous improvement.

A community that models new techniques, teaches new ways to apply principles, and finds shorter paths to success can make a big difference in professional expertise. Collaborating with another clinician to teach a child results in learning better, faster ways to teach. In Shahla’s early career, she learned many fundamentals from her community of practice. She saw that progress was faster and more joyful when the team got together during the week to review progress, brainstorm, and solve problems. They learned how to adapt recipes to children’s needs. She learned simple but important lessons from her community. For example, she learned that spending a half-hour every few weeks scoping out day care supply closets and watching the kids during their hour of free playtime made a significant difference for a particular child. Translating those observations, she then replicated toys and activities for imitation programs that the team was fashioning outside of playtime. This prepared the child for the time he spent with other children at the day care and for the road ahead.

They don’t recognize that applied behavior analysis is a science, not a group of therapeutic practices.

This concept confuses not only parents but also some therapists. Therapy is an interaction between a person who needs relief, healing, or help in improving and the person who guides the relief, healing, or help. A pill can also be therapy. Exercise is another type of therapy. In applied behavior analysis, therapy is a love- and science-based interaction where two or more people are engaged in an interaction. Their interactions change one another. A therapist acts and the individual responds. The individual acts and the therapist responds. The therapist reinforces that response or changes the conditions. If the individual doesn’t respond as desired, the therapist must change what they are doing. Good program staff use their clinical knowledge of scientific methods, the principles of proven research recipes, but they also gather evidence (data) on their clients’ emotional and behavioral responses, to evaluate and tailor their recipes, techniques, and tools.

Author and parenting expert Glenn Latham offered an elegant way to think about this need for continual adjustments. In An Angel Out Of Tune, he likened our parenting journey to a cross-country road trip listening to AM radio. As we pass through regions, we lose the frequency of the local stations. We keep our eyes on the road as we drive, but continually and responsively adjust the dial to stay in tune. Likewise, a skilled therapist continually adjusts to find the evidence and respond to our child lovingly and with flexibility.

Excerpt From: Shahla Ala’i-Rosales, Peggy Heinkel-Wolfe. Responsible and Responsive Parenting in Autism: Between Now and Dreams