Now in his early 50s, John was one of the earliest autism cases in the Bay Area.
One of the Bay Area's first autism moms reflects
by Sue Swezey
Who is that haggard old lady in the mirror, the one with the bald guy next to her? OMG, it’s me, and the bald guy is my son John, who has suddenly and mysteriously turned 53. How could this happen? If you ask John, he will tell you that he’s now a “big man boy.” I am a certified senior citizen, and in two years John will be eligible for AARP, but he’s not ready and neither am I.
In fact, the world is not ready for us. We are accidental trailblazers, never knowing what lies ahead because there have been so few ahead of us. John was conceived during the Rubella outbreak of the early 1960's, with its corresponding autism blip; I was exposed early in pregnancy (pre-vaccine) and given a gamma globulin shot, later found to mask symptoms. John’s generation is among the earliest with identified cases of autism.
The year 1965 marked the founding of the National Society for Autistic Children (now ASA), so named because there were so few known adults. If you could visualize a pyramid showing the number of ASD diagnoses today, its broad base would represent the masses of young children with autism, with teens and young adults in the middle and John and his peers near the peak, almost all alone.
by Sue Swezey
Who is that haggard old lady in the mirror, the one with the bald guy next to her? OMG, it’s me, and the bald guy is my son John, who has suddenly and mysteriously turned 53. How could this happen? If you ask John, he will tell you that he’s now a “big man boy.” I am a certified senior citizen, and in two years John will be eligible for AARP, but he’s not ready and neither am I.
In fact, the world is not ready for us. We are accidental trailblazers, never knowing what lies ahead because there have been so few ahead of us. John was conceived during the Rubella outbreak of the early 1960's, with its corresponding autism blip; I was exposed early in pregnancy (pre-vaccine) and given a gamma globulin shot, later found to mask symptoms. John’s generation is among the earliest with identified cases of autism.
The year 1965 marked the founding of the National Society for Autistic Children (now ASA), so named because there were so few known adults. If you could visualize a pyramid showing the number of ASD diagnoses today, its broad base would represent the masses of young children with autism, with teens and young adults in the middle and John and his peers near the peak, almost all alone.
"The world is not ready for us. We are accidental trailblazers."
It’s not that we missed tens of thousands of autism cases back then. The children with autism simply hadn’t been born yet. Autism was an incredibly rare condition, so rare that at first it was not included in federal studies or California’s developmental services system; it was not statistically significant. There are about 140 regional center clients with autism born in 1963, the year of John's birth. But there are nearly 4,000 such clients born in 2003, just 40 years later. .And today children with autism diagnoses are flooding the regional centers in ever increasing numbers.
Some will insist that there is no increase, that there were as many individuals with autism then as now, that criteria have simply been expanded and diagnosis has improved. While it is true that we now recognize the spectrum as broader than “classical” autism like John's, I cannot support this conclusion no matter how I look at it. In fact, the rapidly escalating State DD statistics represent only the more severely impacted individuals. As for statistics, when John was young, then as now all California children were required to register for public school, even though children with autism were not allowed to attend; thus schools had some notion of whom they could exclude. In 1968 John was apparently one of only two children in the San Mateo school district on the autism spectrum. When we moved to Menlo Park in 1973, he was also one of two until the other moved away. Our pediatrician had only seen one other such child in several decades of practice. As near as Autism Society of America could determine in the 1970's, 95% of known individuals with autism were institutionalized; yet given the scarcity of available facilities these unfortunate children could not possibly approach the numbers we see today.
At any rate here we are, John and I, reluctant scouts at the head of a growing mob close on our heels. I don't remember volunteering for this role, but by virtue of age we are pathfinders, forced to create a future for ourselves and for John alone after I’m gone. The current system provides no rest stops along the way. In fact, most adult DD day programs must currently be re-vendorized when clients turn 65, and there are no programs for our autistic-adults-turned-senior. It is almost certain John will outlive me.
Only yesterday I was a middle-aged mom with tons of energy, which I expected to last forever. Today I am a single mom following the death of my husband, whom I also expected to last forever (more on this in a later blog). As I find myself inexplicably “aging out" of being able to provide care, there are many uncertainties to say the least, but there is also one major solace. When John turned 22, his school opened one of the first adult day centers designed specifically for autism. He was not forced to fit into a setting designed for someone else but was in a place where staff knew him and planned around him and his peers. Many years later he is still there. The program has changed and so has he, but it is a flexible and dynamic place where he is happy and productive. We are both extremely lucky.
In an upcoming installment I’ll talk about the importance of a variety of autism-centered adult programs, and ideas about where John may live when I’m not around to micro-manage. But for now he still lives with me, a situation which clearly has an expiration date – as do I.
Some will insist that there is no increase, that there were as many individuals with autism then as now, that criteria have simply been expanded and diagnosis has improved. While it is true that we now recognize the spectrum as broader than “classical” autism like John's, I cannot support this conclusion no matter how I look at it. In fact, the rapidly escalating State DD statistics represent only the more severely impacted individuals. As for statistics, when John was young, then as now all California children were required to register for public school, even though children with autism were not allowed to attend; thus schools had some notion of whom they could exclude. In 1968 John was apparently one of only two children in the San Mateo school district on the autism spectrum. When we moved to Menlo Park in 1973, he was also one of two until the other moved away. Our pediatrician had only seen one other such child in several decades of practice. As near as Autism Society of America could determine in the 1970's, 95% of known individuals with autism were institutionalized; yet given the scarcity of available facilities these unfortunate children could not possibly approach the numbers we see today.
At any rate here we are, John and I, reluctant scouts at the head of a growing mob close on our heels. I don't remember volunteering for this role, but by virtue of age we are pathfinders, forced to create a future for ourselves and for John alone after I’m gone. The current system provides no rest stops along the way. In fact, most adult DD day programs must currently be re-vendorized when clients turn 65, and there are no programs for our autistic-adults-turned-senior. It is almost certain John will outlive me.
Only yesterday I was a middle-aged mom with tons of energy, which I expected to last forever. Today I am a single mom following the death of my husband, whom I also expected to last forever (more on this in a later blog). As I find myself inexplicably “aging out" of being able to provide care, there are many uncertainties to say the least, but there is also one major solace. When John turned 22, his school opened one of the first adult day centers designed specifically for autism. He was not forced to fit into a setting designed for someone else but was in a place where staff knew him and planned around him and his peers. Many years later he is still there. The program has changed and so has he, but it is a flexible and dynamic place where he is happy and productive. We are both extremely lucky.
In an upcoming installment I’ll talk about the importance of a variety of autism-centered adult programs, and ideas about where John may live when I’m not around to micro-manage. But for now he still lives with me, a situation which clearly has an expiration date – as do I.
Sue Swezey is a co-founder of Autism Society San Francisco Bay Area. She currently serves on the board of SFASA and lives with her son John in Menlo Park.
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