"The bottom line is that our adult system is already drowning, yet this tidal wave clearly looms ahead. Parents can only do so much and last so long. What will happen?"
Thank you to Drs. Robert Hendren and Vanessa Hus Bal of UCSF for inviting me to speak on a panel at the International Meeting for Autism Research (IMFAR) Preconference. They posed the question, how does one measure meaningful outcomes for adults with autism? Below is the transcript of my remarks.
—Jill Escher, SFASA
—Jill Escher, SFASA
So how does one measure “meaningful outcomes” for adults with autism? I’d like to tackle that question in three parts, First, I’d like to suggest the question can’t be answered because there is no such thing as “autism.”
When we say “autism” of course what we really mean is an arbitrary and inherently false label for a variety of underlying mental pathologies. Autism is just a labeling construct, it not an actual thing— from any point of view, be it genomics, neurobiology, phenotype, intervention, or most pertinent to today, functional capacity.
For one adult, a meaningful outcome may be that he stops hitting himself 100 times a day. For another, it might mean finding a job where he won’t get fired for lacking eye contact or forgetting to take a shower. For a young nonverbal woman, it might mean finding a well-monitored program where she can thrive without concerns about molestation or rape. For another, it might mean living in a low-income apartment with regular life skills coaching.
So a good outcome in adult autism must not be defined by fantasy but rather by the reality, desires, and potential of each unique individual.
For one adult, a meaningful outcome may be that he stops hitting himself 100 times a day. For another, it might mean finding a job where he won’t get fired for lacking eye contact or forgetting to take a shower. For a young nonverbal woman, it might mean finding a well-monitored program where she can thrive without concerns about molestation or rape. For another, it might mean living in a low-income apartment with regular life skills coaching.
So a good outcome in adult autism must not be defined by fantasy but rather by the reality, desires, and potential of each unique individual.
Second, it’s just not a complete question. To quote the former chair of the Autism Society of America, “Autism is a whole family condition.” Therefore, “meaningful outcomes” must be measured from a whole family and caregiver perspective as well.
• A parent who is impoverished by leaving the workforce, then facing the relentless financial burdens of caring for a very disabled adult, is a terrible outcome.
• A mother living in fear of being attacked by her adult son is a terrible outcome.
• A sibling who must give up on her dreams of work and family to take on a life of caregiving is not an outcome many siblings desire.
• Parents living in panic because they can find no roadmap beyond their graves for the care of their grown children is a terrible outcome.
• A caregiver earning poverty wages for difficult and demanding work is a terrible outcome.
In short, parents, families and caregivers are also very much affected by autism. They often bear crushing responsibility. Meaningful outcomes for them matter, too.
• A parent who is impoverished by leaving the workforce, then facing the relentless financial burdens of caring for a very disabled adult, is a terrible outcome.
• A mother living in fear of being attacked by her adult son is a terrible outcome.
• A sibling who must give up on her dreams of work and family to take on a life of caregiving is not an outcome many siblings desire.
• Parents living in panic because they can find no roadmap beyond their graves for the care of their grown children is a terrible outcome.
• A caregiver earning poverty wages for difficult and demanding work is a terrible outcome.
In short, parents, families and caregivers are also very much affected by autism. They often bear crushing responsibility. Meaningful outcomes for them matter, too.
Which brings me to my third answer, the “elephant in the room” outcome. And that is the absolute imperative that we develop a robust network of adult services and supports.
We can talk all day about early intervention and “transition planning” and yada yada, but let's face it—children with autism become adults with autism and often lifelong mental disabilities. We are now facing a social services crisis of staggering proportions.
It’s time for responsible leaders in the autism community to ditch the Kool-Aid once and for all and embrace the reality of the autism explosion and the growing urgency to expand lifespan care.
We can talk all day about early intervention and “transition planning” and yada yada, but let's face it—children with autism become adults with autism and often lifelong mental disabilities. We are now facing a social services crisis of staggering proportions.
It’s time for responsible leaders in the autism community to ditch the Kool-Aid once and for all and embrace the reality of the autism explosion and the growing urgency to expand lifespan care.
Let’s be real about the numbers, and since we’re here in California for this IMFAR, we should certainly not ignore our shocking Department of Developmental Services data.
• In about 1980, California’s DDS, which tracks significantly impairing, developmental-disabilty-type autism, saw about 2,000 autism cases. Today, 37 years later, that number exceeds 93,000.
• Or if you prefer to look by birth year, DDS saw about 200 autism births each year through the early 1980s. Today that number is closer to 5,000 births per year.
• Or if you prefer prevalence, in the mid 1980s California DDS-eligible autism was about 1 out of 1000 births. Today it’s closer to 1%. And 1.5% of males.
• Or, if you prefer to project what this means for the future, adult autism in California will quadruple over the next 20 years.
• In about 1980, California’s DDS, which tracks significantly impairing, developmental-disabilty-type autism, saw about 2,000 autism cases. Today, 37 years later, that number exceeds 93,000.
• Or if you prefer to look by birth year, DDS saw about 200 autism births each year through the early 1980s. Today that number is closer to 5,000 births per year.
• Or if you prefer prevalence, in the mid 1980s California DDS-eligible autism was about 1 out of 1000 births. Today it’s closer to 1%. And 1.5% of males.
• Or, if you prefer to project what this means for the future, adult autism in California will quadruple over the next 20 years.
Some have rather flippantly and recklessly blamed this dramatic increase on diagnostic shift, awareness, and ascertainment. Sure, there’s some of that but repeated examinations of DDS data found those factors could not explain the precipitous rise. But DDS has heightened entry criteria, not broadened them. And further, there is simply no evidence that our system has missed two AT&T Park’s worth of older adults with severe variants of autism.
The bottom line is that our adult system is already drowning, yet this tidal wave clearly looms ahead. Parents can only do so much and last so long. What will happen?
What we need more than anything — more than finding another gene (as crazy as I am for genomics research) or tracking another eye movement — is a radical transformation in how we provide lifespan care for this now vast and very vulnerable population.
We need to develop new policy that opens the floodgates to options for services, programs, employment (including unpaid), and housing in all its forms.
All the research in the world won’t matter unless we can achieve this singular outcome.
What we need more than anything — more than finding another gene (as crazy as I am for genomics research) or tracking another eye movement — is a radical transformation in how we provide lifespan care for this now vast and very vulnerable population.
We need to develop new policy that opens the floodgates to options for services, programs, employment (including unpaid), and housing in all its forms.
All the research in the world won’t matter unless we can achieve this singular outcome.
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