When a Diagnosis Isn’t: the “Educational Evaluation of Autism”
“My child was diagnosed with autism. I’d like to see what services I can get with that diagnosis.”
In 16 years of clinical work, I’ve heard variations on this sentence many times, usually spoken at a well child visit.
Most of the time, I offer a nod, turning away from the computer to say, “Thank you for telling me. That sounds like a change. So that I can obtain records, who gave the diagnosis?”
“The school.”
I hear those two words, and I know—
I KNOW—
—this is going to take longer than 20 minutes, or however long I have for this appointment.
I also know this is:
-confusing as heck to both parents and physicians
-critical to understand as a parent of someone on the autism spectrum
-absolutely key for physicians and other medical care providers to understand so that they can explain this to parents in plain language, taking as much time and care as is necessary
So here’s the deal:
Educational evaluations are not the same thing as medical diagnoses.
An educational evaluation is for the purpose of figuring out if a child is eligible to receive special education services and supports.
A medical evaluation is for the purpose of making a medical diagnosis.
“But Dr. Evans,” I can hear you saying already, “if the problem is possibly behavioral, then why on earth wouldn’t the two processes be the same?”
Here’s where we go wading into the ‘maybes’ and ‘sometimes’ with abandon.
When I’ve met one person on the autism spectrum? I’ve met one person on the autism spectrum. No two people are going to be exactly alike or have the same support needs.
Sometimes those needs are minimal, in which case making a diagnosis is often delayed or simply doesn’t happen (most parents don’t want a label for the sake of labelling), and sometimes a child lets us know that they have a need for a lot of support, either behaviorally or academically.
Those are the times when either a medical provider, the school district, or both, get involved in an evaluation.
Let’s make things more complicated, since that’s how this sort of thing tends to roll.
For educational eligibility, here’s the process:
A team of school professionals (usually including teachers, a school psychologist, and the school’s nurse) as well as a child’s parents come together and decide that a child qualifies for services.
To qualify for special ed services for autism, two things have to happen:
1. The team agrees that the child meets the definition of autism as set forth by the state. Some states follow the medical definition. Others don’t. I’ve put this into Venn diagram form for the visually inclined.
2. The team agrees that the symptoms of autism (as defined by the state, remember) interfere with learning and the child needs special services in order to make academic progress.
Notice what’s missing?
A doctor.
A nurse practitioner.
A medical evaluation of any sort.
Medical records of any sort.
That’s because a medical evaluation isn’t necessary. A medical provider isn’t part of the educational eligibility assessment.
And your physician? Your physician isn’t allowed to prescribe an IEP, or demand that your child get special education services. The only concession to medical evaluation that occurs is this:
If there is already a medical diagnosis, those records have to be reviewed.
Unfortunately, even with routine screening at 18 and 24 months, there are all too many children who don’t have medical diagnoses in place, or who the school does not deem eligible for services that medical providers feel they need.
Those kids are caught in the care gap of ever increasing deductibles, and parents that can’t afford private occupational therapy and speech therapy costs, or the $117.12 per psychologist visit every week until the $3000 deductible is met.*
Those are the kids that are waiting for a medical diagnosis, and unable to move forward with the services they need until they have that diagnosis and secondary medical assistance.
Those are the kids, like my firstborn, who the safety net missed.
Next week, let’s talk about the wait for a medical diagnosis.
*Why yes, BCBS, I’m pulling numbers off our own bills and glaring your way.
