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As the world's leading autism researchers and advocates gathered at the International Meeting for Autism Research last weekend to share the latest discoveries about autism spectrum disorder, a strong theme emerged: Autism is growing up.
When you think of autism,
you probably think of young children. But children with autism grow up
to be adults with autism, and eventually (God willing) elderly people
with autism.
In fact, most people with autism are adults, and most adults with autism lack services -- or even a diagnosis.
In her conference keynote
address, Marsha Mailick, director of the Waisman Center at the
University of Wisconsin-Madison, shared data gleaned from 10 years of
following the lives of more than 400 people with autism, starting in
1998. This study was prescient; adults are vastly underrepresented in
autism research, and longitudinal studies into old age are badly needed.
Some good news emerged
from Mailick's study: Autistic symptoms, such as impaired verbal and
nonverbal communication and social interaction, and rigid/repetitive
behaviors, decreased over time among one-third to half of the study
participants, and stayed stable in many others. Independent living
skills remained stable in this group, as well.
However, leaving high
school was a time of vulnerability for participants when, especially in
low-income families, previous gains in skills and behavior slowed or
plateaued. Work or study was minimal for a quarter of the individuals
with autism, and over time women with autism in particular showed a
decline in vocationally occupied hours.
The impact on self-esteem and mental health can only be imagined; people with autism are very prone to anxiety and depression.
The impact of autism on
physical health was also highlighted at the conference by new data from
Dr. Lisa Croen of Kaiser Permanente, who reported highly elevated rates
of hypertension, diabetes and obesity from the medical records of more
than 2,000 adults with autism (compared with 20,000 comparison adults
without autism).
What can we take away
from this? Physicians need to be aware that patients with autism may
have communication difficulties that limit their reports of early health
problems, and sensory sensitivities that may reduce their tolerance for
investigations and treatment.
The children first
described as "autistic" by Leo Kanner in 1943 are now in their
seventies, yet there are no more than a handful of research papers on
the elderly with ASD.
Dr. Joe Piven of the
University of North Carolina spent three years trying to trace elderly
people with autism, and reported at this meeting on just 20 individuals
he and his colleagues had found, all with intellectual disabilities.
Intriguingly, this group
of severely affected older adults with autism showed high rates of
Parkinson-like movement problems. Do these reflect a history of
medication or premature aging, or are they a clue to a previously
unknown neuropathology associated with "grownup" autism?
More clues will come
from work being carried out in the Netherlands by Hilde Geurts and her
colleagues, who presented at the conference this year.
Their preliminary
findings from approximately 200 older adults with autism and comparison
adults without the disorder show quality of life is lower in adults with
autism, and cognitive problems were higher, but in their group of 19-
to 78-year-olds, age did not predict these difficulties.
An enormous amount of
exciting research emerged from the conference, much of it focused on
improving detection and diagnosis, expanding treatment options, and, in
certain instances, even reversing core symptoms for some young children
with ASD.
But as we expand our
research, we must also devote more resources to improving adult services
and better addressing lifespan issues of those living with ASD today.
It's not just about the kids anymore.
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