ABA Resource for Parents

No Regulation. Parents Beware!

 

Many ABA based Autism treatment providers are doing wonderful work and the children that they treat achieve significant gains that last a lifetime. Many diagnosing centers have staff that are skilled at diagnosing accurately, through administering up to date testing methods and thoroughly analyzing the child's behavior.

 

However, unfortunately, not all treatment providers and diagnosing centers are operating at a high standard, nor are they effective at what they do. If you're the parent of a child on the spectrum, or suspect that your child may be on the spectrum but hasn't been diagnosed yet, there is a lot that you should be aware of.

 

Surprisingly, the diagnosing and treatments of Autism are not industries that are regulated. There are regulations in place in the U.S. in terms of what insurance providers are mandated to pay for, for Autism treatments, but technically speaking, these regulations apply to the funding of Autism treatments, as opposed to regulation of the treatments themselves.

 

No regulation means that many children go underdiagnosed due to poor quality testing methods, and there are entire industries built around the treatment of autism using methods that aren't actually backed up by any independent scientific empirical data. Some of these are quite profitable for the providers offering them. First, I'll walk through the diagnosing of Autism and why no regulation of it is detrimental to people on the spectrum. Following that, I'll discuss the lack of regulation for treatments.

 

A correct diagnosis, of whether or not a child is on the spectrum is critical before the age of three, in order for optimal treatment to begin. Some children can be diagnosed as early as 12 - 18 months, depending on the prominence of their ASD, but generally speaking, most children can be accurately diagnosed by the age of 24 months. The reasons for accurate and early detection being imperative are detailed in this website's Early Intervention page.

 

To summarize here, the younger that a child is when he/she starts proper treatment, the more positive and lasting the impact that the treatment is going to have on the rest of his/her life. The timing of when a child's treatment begins, can literally be the difference between whether or not a child will ever speak in their lives for example in some cases.

 

Because there's no regulation and therefore very limited accountability for diagnosing centers, this means that under-experienced staff in lesser quality diagnosing centers can make critical mistakes, and under diagnose a child. We'd experienced this with our own son. He was misdiagnosed with a Global Developmental Delay by a center in our area at age 26 months, and received the same diagnosis by the local Public School system at age 34 months. As an unwitting parent, you just trust the "authorities" to be tuned in to what to look for when diagnosing a child and carry out the proper testing in order to diagnose correctly. lt was only at 52 months of age that the correct diagnosis was given by another Developmental Center in our area and we began Applied Behavior Analysis treatment based on the Lovaas UCLA model immediately. We would have began this treatment when he was 26 months, had he been diagnosed accurately at that time. Our story's not unique. Another family that we're friends with has a now 6 year old son on the spectrum who does not speak. He was also mistakenly diagnosed with a Global Developmental Delay by the same center as our own son at age 31 months. His family has moved out of state to seek what they consider to be the best treatment that they could find, but it is not likely now that he'll ever develop any sort of functional language due to his age.

 

Regarding no regulation of Autism treatments, the tragic part about this, as mentioned previously, is that there are entire industries built around the treatment of autism through methods that aren't actually backed up by any independent scientific empirical data. On the one hand, over regulation of treatments would potentially be a bad thing, as successful treatment methods could go undiscovered, but on the other hand, no regulation at all, means that parents can be instructed to enroll their children in treatments that have never actually achieved any sort of significant gains for a child on the spectrum. A middle ground of regulaton between these two extremes, over regulation and no regulation, doesn't exist today, but is needed.

 

Additional information regarding available treatments is detailed in the Autism Treatments section of this website.