Autism and “Diagnosing for Dollars”
Should an autism diagnosis be given “just” to get access to services?
Diagnosing for dollars? It happens when a doctor gives a diagnosis so a patient can get certain help (or, importantly, get insurance to pay for it). It may happen when a patient (or patient’s parent) ‘shops’ for a diagnosis seen as needed to get certain help understood to be unavailable without the sought-after diagnosis.
In many locales, a diagnosis of autistic disorder or autism spectrum disorder opens the door to intensive, costly, and expensive behavioral therapy (often referred to as ABA therapy). ABA therapy is reserved exclusively for children with bonafide diagnoses of autism. This might sound straight-forward, but there are problems with ‘diagnosing for dollars’ in autism.
First problem: I have colleagues who ‘diagnose for dollars,’ and assign an autism diagnosis, just in case ABA therapy may help that child. Especially when a child is very young (under 3 years old) it can be hard to tell what is developmental delay, and what is truly autism so it is easy to argue that any language delay, any social avoidance of an examiner (or his or her toys), or any over-reaction to sensory stimuli must be due to autism. So, it can be pretty easy to argue a very young child has autism and should get ABA. But, what if the next three clinicians to whom the parents take the child feel the child does not have autism? Once devastated by the first doctor’s diagnosis (who was just trying to be helpful), it can be pretty hard to feel certain the first diagnosis really could have been wrong, and more importantly, many parents will have a hard time putting faith in the belief that their child is just experiencing (or experienced) a transitory delay or two. In the course of ‘accepting’ the autism diagnosis after that first assessment, and having worked beyond that ‘denial’ stage of grief over their child’s diagnosis of autism, parents can have a hard time then seeing what is actually normal, and not part of a disability their child really doesn’t have.
Second problem: There are many children out there who meet just a few of the autism diagnostic criteria. This can include children with language delays, those who later turn out to have learning disabilities, or those from homes lacking sufficient early learning opportunities—among others. These are children who clearly don’t have full-on autism, but for whom a clinician might recommend some ABA therapy—to improve receptive language, learning readiness, etc. Such a clinician will be frustrated by finding ABA is reserved for children who do meet full criteria for autism. If you are that clinician, and don’t want to be ‘diagnosing for dollars’ (unethical?), how might you get your patient comparable help?
There are well-founded studies showing ABA therapy is critical to optimal outcomes in autism. However, the benefits of ABA therapy for other groups of children, simply, have not been well-studied. It’s not that it has been demonstrated that ABA therapy doesn’t help children with language delays, etc., it’s just that it hasn’t been studied the way ABA therapy for autism has. My own experiences and that of many colleagues tells us there are other children who may benefit from ABA therapy, too.
You may guess correctly, that ABA therapy which can cost up to $60,000 per year is a benefit closely guarded by public health, medical insurance, and educational authorities that end up paying for it. None of them want to fund more ABA programs than they already do. But should they?
An alternative would be more generous authorization of ABA therapy, but that 1) can be limited to specific domains—ABA language approaches for language delays, and 2) in order to be continued, would depend upon on-going data collection to document improvements beyond what would be expected by development alone. (This would be akin to rehabilitation criteria for adults with stroke or other traumatic brain injury where therapies continue intensively as long as there’s meaningful improvement.)
Presently, authorization for ABA therapy for autism is often a carte blanche—continuing long after its unique and well-documented ability to foster instructional control and receptive language are accomplished—continuing basically as long as it can be argued that the child is ‘learning.’ Nice, but we hope every child with autism (and every other child) continues to learn through his or her lifetime. For equitable authorization of ABA therapy, we need a better system to insure that all those who may benefit get it—and then stop getting it when there is strong probability that learning can accrue comparable benefit via other less intensive (and less costly) means—without ‘diagnosing for dollars.’
Siegel, B. (2018). The Politics of Autism (Chapter 2- The Politics of Autism Diagnosis), New York: Oxford University Press