Halfway Down by A.A. Milne
Halfway down the stairs
Is a stair
Where I sit.
there isn’t any
Other stair
Quite like
It.
I’m not at the bottom,
I’m not at the top;
So this is the stair
Where
I always
Stop.
Halfway up the stairs
Isn’t up
And isn’t down.
It isn’t in the nursery,
It isn’t in the town.
And all sorts of funny thoughts
Run round my head:
“It isn’t really Anywhere!
It’s somewhere else
Instead!”
As a pediatrician, I know that almost 1 out of every 50 children in the United States will eventually be diagnosed as being on the autism spectrum. We can measure behavioral symptoms during the timespan between 12 and 24 months of age, and autism can actually be diagnosed starting at 14 months of age. The American Academy of Pediatrics has called for over a decade for universal screening for autism at 18 and 24 months of age.
So why, then, across the nation, is the average age of diagnosis of autism spectrum disorder 4 to 5 years of age… and that is mostly if you have the following factors in your favor:
-if you are white
-if you live in an urban or suburban area
-if your socioeconomic status is middle class or higher
(Analysis of social variables show that lower income children, POC, and children from rural backgrounds on the autism spectrum are, in general, diagnosed even later than 4 to 5 years of age- Black children as late as 3 years after parents first bring up concerns to a physician.)
There are all sorts of reasons. Some parents take a ‘wait and see approach’— that’s less often than a physician might think. Most of the time, parents are the ones to bring concerns about their child’s development to the pediatrician.
Some health care providers, despite nearly two decades of strongly worded recommendations regarding the need to use some sort of autism screening test at 18 and 24 months of age, are not consistently screening patients at these ages— or are not follow up on failed screening tests.
More often, health care providers are taking a ‘wait and see approach’, without asking for an infant or toddler to return to the office between well checks, scheduling a phone or video visit to check to see if missed milestones have been gained, or dismissing parental concerns. Black children with autism spectrum disorder, for instance, in one study, were diagnosed more than 3 years after parents first expressed concerns.
Most often, there is a shortage of “expert evaluators”.
Who is an expert evaluator? What does an expert evaluator do? What am I even talking about?
Friend, let’s talk about the “Diagnostic Evaluation for Autism”, also known as “getting a medical diagnosis of autism” or “why is this taking so long?!”.
In an ideal world, where the clinic schedule never got double booked, everyone showed up on time, COVID didn’t exist, and small children giggled instead of screaming when they got their immunizations, here is what would happen…
“Fiddlesticks,” the pediatrician would think, looking at a screening test for autism that flagged my patient as needing second level screening. She would go in, complete the checkup, discuss the screening test— oh, yes, friend, all in 20 minutes— and the need for further testing.
Then she’d make some referrals:
-to audiology, because some of the things that can flag a patient for second level screening are hearing issues
-to the school district for early intervention services, because that’s free to the family (and quite honestly, the only reason I don’t complain about paying taxes)
-and to an autism clinic for a comprehensive autism spectrum disorder evaluation
That last one— there’s the rub. Even with COVID, it’s relatively easy to see an audiologist. Even Early Intervention is working, after a fashion. Sort of.
The comprehensive autism spectrum disorder evaluation? That’s done in a series of multiple several-hour-long visits by a team that includes a physician (sometimes a psychiatrist, sometimes a pediatric neurologist, sometimes a developmental-behavioral pediatric sub specialist), a psychologist or neuropsychologist, a speech therapist, and sometimes other specialists. Reams of assessments are filled out by parents or guardians, and observational assessments are completed, including something called an “ADOS” or Autism Diagnostic Observation Schedule, which is a diagnostic tool that is held up as THE tool for diagnosis.
Then all that information is taken, and synthesized, and recommendations are provided by the team for home, school/daycare, and therapy at yet another clinic visit.
Here in Minneapolis, wait times pre-COVID were as follows:
For ASAP/urgent referrals (children under the age of 2): 4-6 months wait time
For children 2-5: 6-9 months wait time
For children over 5: 8+ months wait time
Thing is, we don’t live in an ideal world.
“@#$!!” Thinks the pediatrician, as she goes to take a deep breath, and then take an extra 20 to 30 minutes to explain the test, the test result, and what the test result means— simply put, that the child in question qualifies for further testing. Then she’s on to the next room after placing orders for the early intervention referral, the audiology referral, and asking the family to come back in a month.
In a month? She’s going to repeat the autism screening test. If she gets the same results— it flags this child as being someone who needs further testing— then she’s probably going to refer to physical therapy, occupational therapy, and speech therapy depending on what areas the kiddo might be not quite up to speed in (even though the therapy for a child with autism is quite different than the therapy for a child without autism). At that time— at that follow up visit— she will place the referral for a comprehensive autism evaluation.
So this is where I start kicking, flailing and screaming like a kid being …well, being given immunizations.
Why?
Because the wait during a pandemic is longer than the wait I’ve listed up above.
Because the wait is totally unnecessary.
Here’s a direct quote from the AAP guidelines on Autism Screening, Diagnosis and Management, updated in 2020:
“Although most children will need to see a specialist, such as a developmental-behavioral or neurodevelopmental pediatrician, psychologist, neurologist, or psychiatrist, for a diagnostic evaluation, general pediatricians and child psychologists comfortable with application of the DSM-5 criteria can make an initial clinical diagnosis. Having a clinical diagnosis may facilitate initiation of services. At this time, there are no laboratory tests that can be used to make a diagnosis of ASD, so careful review of the child’s behavioral history and direct observation of symptoms are necessary.”
As a pediatrician, I am more than conversant with the diagnostic criteria for autism in the DSM-V. Any provider of primary pediatric care should be, given how prevalent autism spectrum disorder is in the population. We are empowered to make an initial clinical diagnosis.
So why aren’t we?
Is it the same hesitancy that causes us as care providers to adopt a “it’s probably fine, let’s just wait and see” approach to children with delays whose parents bring up concerns? I don’t want to think it’s unfamiliarity with the diagnosis of autism.
Is it fear of being wrong?
Friend, let me tell you something: as a pediatrician and as a mother, I’ve been wrong many times. That is part of being human, and there is no part of being a pediatrician that excludes being human, just like there is no part of being a mother that excludes the human experience.
Whatever it is, my fellow pediatricians and I hesitate to make this provisional, or initial clinical diagnosis to bridge the gap to the “comprehensive evaluation”.
So, like Christopher Robin in the poem, these children sit on the stair…
…for months…
…waiting to get services…
…until they’re out of the early intervention time period when those services would have the most, and most critical, impact.
It isn’t necessary.
It doesn’t serve them.
And it does them far more disservice than a misdiagnosis ever could.
