Speaking to an enthusiastic audience, autism researcher Marsha Mailick described her team’s findings on the challenges faced by adults with autism and the factors that increase their independence and function.
View Dr. Mailick’s keynote address above and interviews of attendees responding to her address below.
Follow all our coverage of IMFAR 2014 here.
Dr. Mailick, the director of the Waisman Center at the University of Wisconsin-Madison, is among the world’s leading investigators on autism across the lifespan. Her research on quality of life in adults with autism is funded by Autism Speaks and is part of broader research funded by the National Institutes of Health.
“Images of autism in the media have almost exclusively focused on early childhood,” Dr. Mailick noted in opening her keynote address. “But that’s beginning to change.” The reason for that shirt, she proposed, was the wave of children diagnosed in the early 1990s who are now reaching adulthood. Since then, she added, autism diagnoses have continued to increase dramatically.
Dr. Mailick also noted that the first children ever diagnosed with autism – 8 boys and 3 girls – would be in their late 70s today. Those children were described in case studies by psychiatrist Leo Kanner, who first defined the disorder.
“Of course they weren’t the first individuals with autism,” Dr. Mailick said. “They were just the first to be recognized.”
In 1998, Dr. Mailick and her team began following 406 individuals with autism and their families. These individuals ranged in age from 10 to 52 at the time of their enrollment. Almost two thirds are male. Almost two thirds were verbal at the beginning of the study. Seventy percent had intellectual disability.
After intensive in-home interviews with the affected individuals, their parents and their siblings, Dr. Mailick and her colleagues returned for follow-up visits and interviews approximately every 18 months. To illustrate the range of adult outcomes they witnessed, Dr. Mailick described two participants:
Theresa: Independence in the face of challenges
At age 5, Theresa was nonverbal and described as constantly flapping and spinning, in near-constant danger of running out of the house and falling into severe tantrums if certain objects were moved or touched. She retreated whenever visitors entered the home.
But by 46, Theresa was completely understandable in her speech and engaged in an “appropriate range of communication.” She had been living in her own apartment since age 28, with some professional support. She had significant health problems including severe anxiety and obsessive-compulsive disorder. Yet she held two part-time jobs and kept contact with a lifelong friend. She was described as “not like you or I, but she wants to be there [with people].”
Arnold: A life in decline
By contrast, Arnold was less independent in his 50s than he was when younger. He lived with his elderly parents, both over age 80. He had a succession of focused interests such as playing a few keys on the piano and flushing the toilet. He had attended daycare instead of school as a child and had continued to attend the same adult daycare for 30 years. He was described as “declining.”
Dr. Mailick described the goal of her team’s research as discovering the crucial resources needed “so that more adults who have autism end up like Theresa. To do that, we need to study factors that can change the life trajectory of individuals with autism as they grow up.”
To achieve this goal, Dr. Mailick’s teams created original measures such as the Waisman Activities of Daily Living Scale,” developed by Matt Maenner. With 17 questions, the scale assesses the ability to live independently based on skills in the area of personal care, mealtime, housekeeping, running errands and money management. They also tracked autism symptoms and behavioral problems using established psychological checklists.
Troubling life trajectories
With these tools, they plotted independence, function and quality of life across the lifespan, looking for the factors that influenced outcomes. For comparison, they tracked the life course of a group of adults with Down syndrome.
Early in life, the individuals with autism averaged slightly lower in daily living skills than those with Downs syndrome. But their trajectories followed very different courses. (See Dr. Mailick’s graphic below.)
On average, the group with Down syndrome steadily increased in daily living skills and independence across the lifespan. By contrast, those with autism – on average – followed an arc with function and independence increasing somewhat in their teens before declining in adulthood.
“We must drill down to find out what this loss in life skills means,” Dr. Mailick emphasized. “This is a huge difference in life trajectories in Downs versus autism.”
On a positive note, communication skills tended to increase across the lifespan in individuals with autism who were nonverbal in childhood. Some worsened, but the majority improved or remained steady.
High-school exit as pivotal transition
Dr. Mailick went on to describe a related study that revealed a pivotal change in life trajectory at the point when individuals with autism left high school. From this point in life, their entire study group of individual with autism – both those with intellectual disability or without – showed either an overall slowing of improvement in autism symptoms and behavior or a worsening in symptoms and behavior. This trend continued through adult life.
One crucial factor separated those whose improvement slowed at high-school exit from those whose improvement worsened: socioeconomic status. Those whose families were poor experienced a worsening in autism symptoms, problem behaviors and life skills in adulthood. (See Dr. Mailick’s graphic below.)
“During high school socioeconomic status did not differentiate those with behavior problems and those without,” Dr. Mailick said. “High school provides services for all. But after high school, it really made a difference whether you were from a poor family.”
Their research also suggested that inclusive schooling was a positive influence on adult outcomes.
Employment was another positive influence, a finding illustrated in an Autism Speaks-funded study led by Julie Lounds Taylor, a member of Dr. Mailick’s team. “It’s important to note,” Dr. Mailick said, “that vocational independence predicts improvements in autism symptoms and significant improvements in behavioral problems, but the reverse is not true. The level of autism symptoms does not predict change in vocational independence.” In other words, no matter a person’s level of autism symptoms, engaging in some type of a work activity increases daily living skills and independence.
Concerns about medical care
Anecdotally, Dr. Mailick described 19 study participants who died at relatively young ages during the study. She made clear that this is too small a number to make epidemiological conclusions. Still it was worrisome.
For instance, five adults died of cardiac arrest at ages 31, 37, 47, 48, 57. Five died of cancer between the ages of 23 and 46. Of particular significant, Dr. Mailick said, was that most of these cancers were diagnosed late, at stage 4. Another three individuals died of medication side effects. Two choked on food. Causes of the four remaining deaths included seizure, pneumonia and an accidental poisoning.
Such deaths may well reflect a lack of appropriate preventive medical care, Dr. Mailick noted at a Stakeholder Luncheon after the keynote address. “It’s not easy to take a child with autism to the doctor. It can be even more difficult for adults with autism to get regular medical care.”
“We have a great need for medical professionals with expertise in autism and medical management issues such as these.”
Reduction in autism symptoms and behavior problems on average; leaving high school a turning point usually for the worse, especial for those with low income families
“The transition to adulthood is a time for risk for individuals with autism,” Dr. Mailick concluded. “But we see that access to greater resources, positive parenting, inclusive education and greater vocational engagement are associated with more favorable adult outcomes.”
Dr. Mailick is continuing her Autism Speaks-funded research on quality of life and pivotal supports for adults with autism. (Look to this news column for more results in the coming year.)
Below, Autism Speaks "Science Guy" Michael Rosanoff gets reactions and responses to Dr. Mailick's keynote address from other researchers who focus on understanding and supporting the needs of adults with autism.