By Kimberley Rego
Special Education Advocate
March 17, 2016
If I hear one more special educator or administrator tell me, or anyone else, that kids with autism spectrum disorder diagnoses don’t need the supports and interventions described by their medical professionals because they "know" that the disability is over diagnosed, I may actually scream.
This sentiment has driven me to take a hard look at special education in Massachusetts for autistic kids and the reasons why our neighborhood public schools are failing them.
Unfortunately, we are not yet at the point where we can identify autism in a genetic or biological way. While much progress has been made in identifying the subgroups of the autism spectrum and their corroborating comorbidities, the definitive answer to the question, “What exactly is autism?” still eludes absolute description.
As a result, the medical professionals who study and support autism rely on groups of symptoms like gastrointestinal disorders, seizures, repetitious mannerisms and anxiety, to reinforce observed deficits in social functioning and understanding, to make a diagnosis. All of this takes a lot of time and massive expertise by clinically trained medical professionals.
Enter the legal mandate to support these kids, who have neurologically driven challenges, in the public education system. The educational staff has neither the credentials to diagnose these conditions nor the training, in many cases, to properly implement interventions, but they are legally responsible for delivering the supports needed to succeed.
On what planet is this good design?
I feel for these educators. They are charged with a nearly impossible task because for many, their skill set is not matched to the problem. Had they expected to need clinical backgrounds in developmental neuroscience to properly educate their populations, they may have made different choices.
This discrepancy of children with medical, or specifically neurological needs, being handled largely by non-medical professionals, with only general special education training, is at the heart of what is wrong with special education in America.
A parent can get superior supports for social, behavioral and psychological issues at private facilities or on the large hospital campuses like Children’s Hospital Boston, but these entities will not cross over into full day education. In fact, many will not even leave their offices to observe the academic setting and describe the appropriateness or inappropriateness of the academic supports, putting an even larger wedge between professional educators and medical professionals.
Similarly, schools do not have the funds or the training to support such needs in ways like embedding services into the curriculum, even though our laws hold them responsible for the delivery of these interventions. I have been observing an increasing need, on the part of parents, to fund experts as observers to watch and document their child in their learning environments, to establish whether or not their child’s placement and supports really are effective in mitigating their issues.
This process is extremely expensive and generally uncovered by health insurance, so only those with means will be able to advantage their child with this sort of oversight.
There are many skilled, substantially separate placements where the educators have more targeted training and things like Applied Behavioral Analysis and Cognitive Behavioral Therapy are intertwined with solid, social skill development and data collection, but they are very costly, and school districts will fight tooth and nail to prove your child does not demonstrate enough need to warrant such a significant change of placement.
There’s the rub. It costs a lot of money and requires targeted training to support many of these kids, and schools simply cannot afford to do it right for them all. The result is disputed diagnoses and recommendations from medical experts, and absurd claims launched at parents implying they have shopped for clinicians to label their child as requested.
The elephant in the room, as I already mentioned, is that these educators are not qualified to make that decision. Knowing all this, we have entrusted them as the gatekeepers of eligibility for specialized services and placements.
Some will be lucky enough to have the time and resources to prevail in getting their children what they need. Those who fall through the cracks are often those on the low end of the socioeconomic scale, lacking means to hire professionals and lacking time to dedicate to this overwhelmingly complicated process.
Every kid with an autism spectrum disorder deserves to get the correct supports and it should not be a judgment call by an administrative body that was never designed to have ultimate authority over medically impacted, educational outcomes. Early and intensive intervention is what is needed to provide best outcomes for these kids. The intensity and duration recommended by those who know what it takes to produce optimal outcomes.
Developmentally, the window of neuroplasticity (the time in brain development when intensive and targeted learning can actually rewire the brains connections) begins to close around age 12. After that, new skill and language acquisition slows considerably, negatively impacting outcomes.
It’s high time the medical and educational communities step out from their silos and work collaboratively to design and implement real, data driven, supported curricula for these kids.
The clock is ticking and the windows are closing for many.