By Kasra Zarei
When the new orange-haired “Sesame Street” character Julia was introduced on the popular children’s show last month, it was clear the color of her hair wasn’t the only trait that made her distinct — the Muppet is portrayed as having autism.
The month of April is dedicated to autism awareness. Members of both the health-care community and the general public have a much better understanding of autism since the condition was first identified in 1943. But as many local families affected by autism will attest, challenges still remain to get their children the help they need. One local organization is making inroads into how to care for autistic children as they age into adulthood.
The term autism was first used in the early 1900s to describe a group of schizophrenic patients, but it’s only fairly recently that clinicians have become more familiar with the condition.
“The first cases of autism were identified in 1943, but clinically, it was considered to be uncommon until the 1980s,” said Todd Kopelman, a University of Iowa clinical assistant professor of pediatrics and psychiatry and the president of the Iowa Autism Society.
As Kopelman notes, 30 years ago, few people were professionally aware of what autism was. Since first being tracked in 2000, the prevalence of autism has steadily risen. The most recent statistic from the Centers for Disease Control and Prevention reports that autism has a prevalence of 1.46 percent among children (or 1 in 68 children), more than double what was reported in 2000.
However, specialists are quick to note there has not been an autism epidemic. Rather, the main reason for the increase is the growing awareness of the condition and improved diagnostics, the latter of which has not even fully penetrated rural areas that face reduced access to health-care providers. It’s not unreasonable to expect the reported prevalence to increase in the future.
Before the condition was fully understood, a firm diagnosis required a lot of time and was rare; physicians were not aware of the disorder, and often it was mistaken for other conditions, including deafness.
“Unfortunately, the responsibility was on the parents to educate the professionals about this condition and work on getting resources in the schools and community,” Kopelman said.
Today, the clinical and research professionals are more knowledgeable about autism. While diagnosis still requires a multidisciplinary team of pediatricians, psychologists, and professionals of other disciplines, clinical evaluations have been aided by the creation of screening and diagnostic tools including the Diagnostic and Statistical Manual of Mental Disorders and genetic tests that have made the condition easier to assess in clinic.
Beyond diagnostics, experts have a deeper understanding of the various genetic- and environmental-risk factors (though the latter only increases risk slightly at most), the biological mechanism, and interventions for treatment. One example of these therapeutic interventions is applied-behavior-analysis services, an evidence-based approach used to bring about positive and meaningful changes in behavior for children with autism.
Advocacy through understanding
Originally, advocacy in the autism community was primarily a parent-driven effort, but now it consists of professionals, parents, and a lot of stakeholders.
One local individual joined the advocacy group because of her connection with autism: Mary Roberts serves as the coordinator of the autism center at the UI Hospitals and Clinics and is a cofounder and president of the Village Community, an organization that provides community-based day programming for young adults with developmental disabilities.
She is also the mother of two young adults, both of whom are on the more affected end of the autism spectrum.
Roberts’ daughter was diagnosed with autism at 18 months old, over 20 years ago. At that time, Roberts’ only context for autism was the 1988 movie Rain Man, which starred Tom Cruise and Dustin Hoffman. Of course, autism does not always exhibit with hand-flapping or struggles with verbal communication, as portrayed in the movie. That’s where the word “spectrum” comes in: People diagnosed with autism often present with a wide range of characteristics. Asperger Syndrome, for instance, is now considered to be on the same spectrum.
“I had some contextual basis but [Rain Man] was it,” Roberts said. “I went home and read a book about autism, and it was like reading about my child. I delved in immediately to ‘What now?’ Through my own quick research, I figured out what we needed to do to get my daughter the help she needed.”
Research has also shown that families with one autistic child face higher chances of having a second child diagnosed, perhaps because of some underlying genetic predisposition or environmental risk factor. Roberts’ second child, Jacob, was also diagnosed with autism, within 1 year of age.
“Since then, my life has revolved around autism as a necessity,” Roberts said. “Yes, it’s been challenging, but we also have a wonderful supporting community and a lot of resources both as far as funding goes and services at our disposal, and I consider our situation to be best-case scenario, given our level of involvement.”
When it comes to autism, Roberts notes that other parents can be the best source of information.
“When you have to live it, it gives you an insight that is a little different,” she said. “You have to figure out where to get services and how to navigate a very complicated system.”
Beyond the system of services, there are additional challenges for members of the autism community. Bullying unfortunately remains a problem, especially for children who are moderately affected and may not have an adult with them at all times. But parents, too, can often be judged unfavorably.
“The negative reactions are not necessarily directed at the kids, but are often directed at the parents,” Roberts said. “Especially when the kids are younger, autistic behavior is often mis-perceived as bad parenting or public temper tantrums, and a judgment is placed on the parent because the observer does not understand what they are seeing and that it’s a manifestation of the disability instead of a child choosing to act out.”
And often, parents are caught in the middle — they are trying to navigate the reaction of people in public who don’t fully understand what they are observing, while also trying to help their child.
“I’ve had many parents of children with autism tell me that they stop doing things that they used to, like going to church, because of the concern that they will be looked at negatively by other parents,” Kopelman said.
As a result of these negative judgments, autism can be very isolating for the families of those affected, almost out of necessity.
“The community is more accommodating than it used to be, but we’re not all the way there yet,” Roberts said. “There is still a lot of work that has to be done as far as awareness and acceptance.”
Advocates believe featuring an entire month to bring awareness to autism is a start. But they offer another piece of advice to the general public: In the event of witnessing a public meltdown by someone with autism, outside reassurance or comfort, or even a neutral response, should always be provided instead of negative judgments.
“Letting the parent know, ‘I understand what I’m seeing and I’m available to help,’ without necessarily stepping in is universally appreciated and validating,” Roberts said.
“ ‘What can I do to help’ is better than people rolling their eyes or making pejorative statements like ‘What’s wrong with your child’ or ‘Why can’t you control your child,’ ” Kopelman said.
Being a parent of an autistic child can come with side effects. Research appears to show that there are high levels of parent-reported stress, depression, and divorce and separation related to having a child with autism, particularly more than is present in relation to other conditions.
“This is not to say that most families don’t function fine and even sometimes better, but it is important to reduce any feelings of isolation in the autism community,” Kopelman said.
Another lesser-known fact about autism is that it spans a person’s life.
“There is a lot of focus on early childhood, which is very important, but all of these children grow up to become adults and require support, especially as they age out of the public-school system,” Roberts said. “At the same time they are awesome. Their personalities are ingrained in adulthood, and they are some of the unique and most fun people I know.”
One example of these forms of support is the Village Community.
The Village Community
Located on a rustic, spacious farm near West Branch, east of Iowa City, with its 16 unique members and eight devoted, caring staff, the Village Community consists of a cozy house and a neighboring barn in which sports can be played. Inside the house, among a number of welcoming components, hangs artwork of birds — drawn by the members during an afternoon outing — a tent to sit in to escape the surroundings, and furniture to congregate around to do individual and group activities from sorting colored beads to discussing current events.
The Village Community was conceived in 2013, with the goal of creating a model to keep adults with developmental disabilities active, engaged, and learning in a safe environment in which they can be cared for beyond the lifetime of their parents while living in residences.
“Children with autism thrive on the consistency of a caregiver, and we’ve put a lot of effort in building a committed staff and an extended family,” said Ann Brownsberger, the executive director of the Village Community. “We recognize that it is a model that works well and can be replicated. It’s not magic, but it needs the people to put the work in.”
Of course, the Village Community requires money to run it, and Brownsberger notes the organization can’t serve all interested families because of the limited amount of resources available, whether land or labor.
How to pay for services remains a challenge; autism is wrapped up in the health-care reform process, which causes concern given recent pushes to repeal and replace the Affordable Care Act.
The Iowa Legislature passed a measure this year to increase insurance coverage for applied-behavior-analysis services. However, resources beyond insurance coverage are needed for the autism community, especially for adults.
“We need to be sure individuals with autism receive the community-based resources they need as adults to live as independently as possible, which is the ideal,” Roberts said.
It is also important to connect families with correct information, such as the large body of research that suggests vaccines are not related to autism.
“I thought it was a door we had closed, but as a clinician, I’m concerned that this door will be reopened again, and I am concerned that we may have a lot of anxious parents refusing to vaccinate their children when they shouldn’t be [refusing],” Kopelman said.
President Trump’s and Robert F. Kennedy Jr.’s embrace of the discredited hypothesis linking vaccinations to autism has fueled the anti-vaccine movement, which threatens the health of humans on a global scale because deadly diseases, including whooping cough and measles, remain in populations in which people are not vaccinated or are under-vaccinated.
“It’s important that we as professionals connect parents in the autism community to correct information,” Kopelman said. “If science is not appreciated and under-funded, then we will be in a world of hurt.”
Science demonstrates that there is no relationship between autism and vaccines, but a lot of different scientific questions remain unanswered, including why autism is significantly more prevalent in males compared to females or why females tend to be more severely affected than males.
Because autism spans a life, UI scientists, including Assistant Professor Jacob Michaelson, are also trying to understand what autism looks like through adulthood.
“Autism is a condition that, overwhelmingly, is studied in early childhood and at a single snapshot in time,” Michaelson said in an email.
The UI autism interest group is broadening its research to look at transition periods in autism, these transition periods include puberty and young adulthood, when some individuals move out on their own.
“Aside from these transition periods, we hope to build a better picture of what the long-term outcomes are like,” Michaelson said.
A fulfilling life through positive relationships
The discussion about science aside, at the end of the day, when it comes to being a person connected to an individual with autism, focusing on the child’s interests and areas of strengths is just as important, if not more, than focusing on areas of deficits.
“Help them throughout their lives to explore their strengths so they can capitalize on them,” Kopelman said. “This will help them find more opportunities to do what they love.”
These strengths can take the form of art, music, science, movie scriptwriting, and an infinite list of interests. Brownsberger cited the example of one member of the Village Community on the autism spectrum who was adept at geography down to the geolocation. This individual could remember and recite every direction — turn, exit, street name, and distance — following a car ride and even served as a human GPS for Brownsberger on one occasion.
“People with autism can live fulfilling lives, but it will be different for them,” Brownsberger said. “Fulfilling can be defined as having positive relationships and an environment conducive for their learning and development, where variables are controlled to give them the best opportunity for success.”