It’s autism acceptance month. There’s an awful lot I don’t accept.
It’s autism acceptance month, a time dedicated to promoting the understanding and inclusion of individuals on the autism spectrum.
As a board-certified child neurologist and the CEO of Cognoa, I believe there is still a lot of work to be done to make these two words – “autism acceptance” – truly meaningful.
Acceptance can’t happen without knowledge.
Knowledge rests in the hands of the healthcare system.
The state of its ability to evaluate and identify autism, a complex “spectrum disorder,” is deeply flawed and biased.
The accepted process is broken and is, in fact, unacceptable.
I don’t accept that more than a million children are stuck on waitlists – for months or even years – to be evaluated for developmental concerns.
We know that reliable autism diagnosis is possible at 18 months.
We know that nearly four in ten children diagnosed with autism early have such significant improvements with early interventions that their diagnosis loses relevance by age 6.
But the average age of diagnosis has remained unchanged at over 4 years since the CDC’s tracking began more than 20 years ago.
We’re missing the critical neurodevelopmental window that gives individuals the best chance for optimal outcomes.
Inaccessible, impractical practices
It is unacceptable that parents have to fill out pages of intake forms just to get on a waitlist.
It is shameful that evaluations take hours, in unfamiliar clinics, after exhausting, long car rides, often across state lines to scare specialty centers.
We are denying families the chance to accept their child’s development and uniqueness because they don’t even know.
Isolation vs. collaboration
To my physician colleagues, stop abdicating responsibility for making a neurodevelopmental diagnosis to psychologists.
Isolated psychological assessment without a medical evaluation is dangerous. A third of children with autism also have epilepsy, and vice versa.
Similarly, underlying metabolic or immunological disorders can go undetected when parents solely seek psychological evaluations.
It is clear: the key for comprehensive, whole-child care needs to start in the primary care medical home, the pediatrician.
Unacceptable policies
I reject the outdated, unresponsive policies of insurance companies and states that refuse to recognize autism diagnosis made by primary care pediatricians — a denial so egregious considering there are only 758 developmental-behavioral pediatricians in the entire U.S. to cater to the needs of 19 million children.
Mandated assessments
Insurers and policies that arbitrarily require specific assessments using research instruments with known biases, which are simply unusable for primary care settings, only serve as barriers.
It is unequivocally known in the clinical community that these lengthy, impractical evaluations are unnecessary for many children.
High cost of inaction
I do not accept the self-proclaimed “innovative” insurers that procrastinate. Not when it is indisputable that early interventions can dramatically decrease the likelihood of lifetime, comorbid mental health conditions.
Not when we know we can cut overall healthcare utilization and costs when children are diagnosed faster and sooner. Yet the status quo remains.
Inequities
I cannot accept the prevalent inequities and injustices that continue to exist.
I am appalled that girls continue to be diagnosed significantly later than boys.
I am dismayed that people of color are still being misdiagnosed, diagnosed years later, or missed by the “system” altogether.
I’m from Detroit, a dad of girls, a volunteer for the Girl Scouts, and live and work in L.A.
These inequities are offensive, and I would hope unacceptable for anyone, regardless of background.
DEI lip-service
Diversity, equity, and inclusion initiatives ring hollow when objective, accessible solutions exist.
Diversity is crucial to truly account for differences in gender, race, ethnicity, socio-economics, and zip code.
Responsible AI, built and trained on diverse data, mobilized for at-home use, used within the medical home of the family, truly embodies DEI compared to subjective, scarce, resource-intensive diagnostic processes.
High time for change
These facts are no exaggeration. We don’t accept this kind of procrastination for any other medical condition.
If you can’t tell, I am screaming and frustrated that this is falling on ears that refuse to listen, resist change, or just don’t give a shit.
The medical establishment can and must act, no excuses.
Early childhood development and behavioral healthcare is a clear opportunity to decrease costs, optimize our resources, and improve quality of care, and life.
Change these outdated policies and practices that contribute to the waitlist crisis rather than solve it.
The American Academy of Pediatrics declared a state of emergency in youth mental health and have vowed to take action to ensure pediatricians’ diagnosis unlocks the coverage of essential services that children need.
Some policy-makers are slowly standing up. Some commercial health insurers are making moves. More of them can do more, and do more faster.
We can’t be afraid of change. We clinicians took an oath, “do no harm”, but we are harming our children because every day they wait for an evaluation is a lost day of profound intervention that cannot be replaced.
Try and try again.
Yes it’s change, but it’s necessary change that will have a real impact on the daily lives of children and their families immediately, and life-long.
This April, of course I’m accepting of autism.
But we must also stand for changing archaic thinking, approaches, and policies that prevent the first crucial step so that families can even begin to accept.
Stand for knowing, knowing early. Demand that opportunity.
