All three of our boys, twins age 5 and a 3-year-old, are autistic. Anecdotally I hear I’m only two children away from establishing some sort of world record, as I was told that the O’Donnell family featured earlier this year on Extreme Makeover Home Edition with 5 out of six children on the autism spectrum is the most on record in a single family in the United States.
If the financial crush of providing treatment to a single autistic child is staggering (estimates are that it will cost over $3 million dollars per child over their lifetime), imagine my dilemma. There’s a variety of services and programs available to autistic children none of which are covered by the vast majority of private health insurers. There are intensive therapies with scientifically proven results available, again not covered by insurance. Do you want to know who our system in the United States has entrusted (or rather mandated) to be responsible “solving” the autism problem?
The public education system.
I’ll give you a moment to ponder the implications of that observation…
The people who for a generation have shunned effective, disciplined study of the basic building blocks of vocabulary (read phonics) in favor of touchy feely, feel good approaches that failed our children are the gatekeepers to treatment to the fastest growing childhood epidemic in the world. I’m severely generalizing here because no two autistic children have the same needs, but by and large what autistic children need is one on one attention in learning environments, and a structured approach to all facets of their work on verbal and non-verbal skills. Structure, rigor, discipline, and individual attention are hardly qualities anyone associate with the public education system.
Just as it is with general education there are special education systems that do outstanding work for children on the autism spectrum and there are systems that are horrible. The vast majority fall in between, what we would think of as “average.” The problem is that where most general education students get a respectable education in such settings, autistic children in these “average” programs (in many cases) are for all intents and purposes untreated.
To get the services they need families, if and when they figure out how the various laws work, must either relocate to states (or other school districts) who offer rigorous, individualized programs that have a history of success, or fight (and often sue) their current school system to get the services the laws on the books say that their children must receive. School districts have a vested financial interest in NOT providing the treatment programs that have a history of success because most of them are expensive, manpower intensive systems. There are any number of strategies and dodges they use to not provide services, but chief among them is that they prey (many would say deliberately) on parents who do no know or understand what the IDEA (Individuals with Disabilities Education Act) requires and/or the in’s and out’s of FAPE. It takes a while of being in “the system” to even begin to understand where and when it fails children, even if you can viscerally tell that it is failing. Many, many children never get the services they need because it take strong, almost crusading, parents to fight the schools for needed services – there’s no magic pot of money for this stuff so it comes right out of the general education fund. The FAQ at Wrightslaw provides a case of a dyslexic child which mirrors exactly the kinds of roadblocks parents of autistic children face.
It’s important that you remember all of this, there will be a test on it later today in Part II…