Framing the Autism Numbers
Yesterday, the Centers for Disease Control released new figures regarding the incidence of autism among children in the United States. That figure—repeatedly referred to as “staggering”—is 1 in 88. One child out of every 88 in this country has an ASD diagnosis. There will be a lot of discussion regarding what this means in terms of increased incidence versus increased diagnosis, with the CDC noting that it’s likely a combination of the two.
In addition, on Wednesday Autism Speaks released findings of a study conducted by researchers from the London School of Economics and the University of Pennsylvania that examined the cost of autism to society. These investigators put the cost of autism at $126 billion per year in the US and £34 billion per year in the UK. The study estimates that an autistic person in the US who has an intellectual disability will need care over lifespan adding up to $2.3 million; caring for someone with autism but without an intellectual disability totals about $1.4 million over lifespan. (It’s worth noting that these calculations were based on the prior CDC report that 1 in 110 children are diagnosed with autism in the US.)
I’m going to leave the discussion of incidence versus increased diagnosis—as well as what causes autism—to others. Rather, I want to focus on what this news means for families already living with autism whose children, like all children, grow up in the blink of an eye. Those same families already seeing available resources dwindle—both fiscally and in terms of service availability.
There is a tendency to think that an increase in prevalence means that an increase in government spending must necessarily follow. That if we push hard enough at the government, someone will provide, because there must be the money somewhere.
And while we will hopefully see increases in government spending as a response to the CDC announcement and effective advocacy, we as families need to understand, really understand, that there is simply not enough money to go around. Not at the level that many families need.
At Autism After 16, we hear from families on a daily basis who are stunned at the lack of resources available for their adult children. We cannot say this loudly enough or strongly enough: You must be diligent in pursuing existing public resources, especially while your child is still entitled to special education services. You must carefully plan how to combine public supports with personal resources. It is crucial to budget for lifespan. You must think carefully and clearly about how much you will need to help support your autistic child throughout adulthood. While many people are trying to develop adult service models that work, and even more people are diligently trying to convince policymakers to prioritize support for autism research and services, you cannot assume that your child with autism will be employed at a level that will allow him to support himself or that publicly funded supports will be sufficient.
We are not trying to be the voice of doom and gloom at AA16. We are trying to be the voice of reason. We firmly believe that working together, families, communities, advocacy organizations and policymakers can improve the quality of life for people with autism. In fact, we spend much of our time and energy trying to locate and analyze successful and sustainable models of service delivery that can be replicated across communities. But making these models a reality will take a concerted effort. An effort based on how to do more with less. And it will take time.
Autism carries with it the need for tremendous support, from early detection and intervention, to individualized public education measures, to supported employment and adult residential options. Until we discover how to actually change the prevalence numbers, we must be wise about working with the dollars. We cannot afford to be wasteful, publicly or privately. Because it takes more than a village to raise children with autism. It takes a village with money.