“Not only was I misunderstood, but I had no real means to communicate,” recalls 19-year-old Samuel Capozzi, of Thousand Oaks, of his childhood. “I experienced frustration, confusion and anger as I tried to make sense of my world.” Diagnosed with autism as a young child, Capozzi was completely nonverbal, leading many to believe he was on the lower-functioning end of the spectrum — what some might describe as having severe autism — until his teen years. That impression shifted three years ago.
Brent Anderson speaking at Children’s Theraputic Learning Center.
“In 2012, when I was 16 years old, I learned a specific method pointing to letters to communicate. It’s called rapid prompting method,” he explains via email. “My whole world changed. Up to this point, I had no real means to communicate effectively. I literally went from Dick and Jane readers to finishing three years of Latin! Of course, everyone’s perception of me and what I am capable of changed.”
Capozzi has since become very active in the community. He sits on the board of the Autism Society of Ventura County, was named grand marshal for the Aut2Run race/fundraiser in April (the first person with autism to hold the position) and will be attending California State University, Channel Islands, in the fall. Yes, he is nonverbal and has what he calls “some pretty significant outward impairments.” At college he will require special assistance (including a note-taker and audio-version books). Such facts don’t deter this intelligent and ambitious young man.
After his Mathematics class, Samuel Capozzi and his communication assistant,
Ariel Murillo discuss the importance of Samuel continuing his education
at the college level on the campus of California State University Channel Islands.
Photo by: Scott Alan Mount
Capozzi’s experience demonstrates the way our understanding of autism is changing — and with it, our perceptions of the people who live with it. In the 1960s, most people on the spectrum were put in institutions. Even 20 years ago, someone nonverbal or with significant social challenges would not have been expected to hold down a job, attend university, live independently or otherwise participate fully in society. But today, the trend is to do just that, for people at all points on the spectrum.
That’s partly due to a change in the way we think about autistic spectrum disorders. Autism exists on a “spectrum” because the frequency and severity of symptoms can vary widely — and the more symptoms that appear, the more severe the diagnosis. Symptoms used for diagnosis include an inability to speak, lack of eye contact, not understanding nonverbal communication, and a need for routine. Traditionally, persons on the “higher-functioning” end of the spectrum were categorized as having social challenges associated with autism, but no intellectual disabilities. On the “lower-functioning end” were more “severe” diagnoses, which usually involved intellectual disabilities as well. Today, however, most professionals consider these models too simplistic.
Steven Graff is a psychologist and director of clinical services for Tri-Counties Regional Center, one of the largest agencies providing funding, support and services for Ventura, Santa Barbara and San Luis Obispo residents with developmental disabilities. While he acknowledges that there’s some truth to the classic paradigm, he’s quick to add that, “I don’t like saying someone is high-functioning because they don’t have a lot of symptoms. … Even someone who is high-functioning can have severe symptoms.”
Sharon Francis, CEO of Channel Islands Social Services, which provides respite care and other support for people with autism and their families, notes that, “People can appear to be really low-functioning, but it may be that they are just not communicating in a way we’re used to seeing. … It’s really hard to generalize.”
Communication — or rather the lack thereof — is one of the biggest challenges people with autism and their families have to overcome. Advances in assistive technologies have played a huge role in getting over that hurdle … and given voice to a population that for many years was nearly silent.
“The fact of the matter is, if you’re considered nonverbal most people think you’re non-thinking,” Capozzi says. The rapid prompting method, the picture exchange communication system and even computer technology like the iPad have allowed many people with autism to communicate meaningfully, opening the door to learning, expressing needs and desires and, crucially, building relationships with other people.
Jenipher Swanson, a board certified behavior analyst with 17 years of experience working with children and adults with autism, sums it up neatly: “Humans are relational beings. Being able to access peers and maintain relationships is really important.”
Early intervention has been another breakthrough. The sooner an individual is diagnosed with autism, the sooner behavioral, occupational, physical and speech therapy can be implemented. “Behavioral therapy is the key,” Francis says. “You have to hit it early and hit it hard.” That can mean as many as 30 or 40 hours a week, and Swanson says that it’s almost never too early to start. The two-pronged approach reduces maladaptive behaviors (self injury, self stimulation, aggression, tantrums) and teaches appropriate communication, self-care and social skills. Experts have found that early intervention — ideally before 5 years of age — is crucial to successful outcomes when children with autism become adults.
“The more money you put into early intervention, the better it is for the individual — and the state,” says Aaron Kitzman, vice president of adult programs at Villa Esperanza, a local nonprofit that serves people with developmental and intellectual disabilities. “As [young people with autism] improve, they need less support when they get older.”
Less support … and different kinds of support. The institutional model is rapidly being replaced nationwide by community integrated living: finding ways for people with developmental disabilities to live successfully in the community.
“A person with severe autism spectrum disorder would have been institutionalized 50 years ago,” Graff says. “Now we might say, ‘can your child be supported in the community?’ That’s our mission. … Services have evolved a bit to support more severe individuals in the community.”
Some like Capozzi continue to live at home and receive services; some may live in a home setting under the 24/7 care of a service provider; others may live in a home with other roommates under the guidance of a trained professional (who may live with them, or may simply check in periodically). Independent living support classes teach budgeting, cooking, cleaning and other skills that enable individuals to live alone safely and competently. Job coaches and vocational training have helped many individuals with autism find employment.
Brent Anderson benefited immensely from these types of services. At 21, he started trying to find a job and live on his own in Ventura. But without support services, he struggled, and began to regress. “As I got older I had a hard time finding a job,” he says. “It is very hard for people with autism to find jobs that they enjoy.” Anderson and his mother, Linda, moved to Ventura County, where Tri-Counties and The Arc of Ventura County helped him get back on track. He graduated from Arc’s living skills class, got his own apartment and wrote a book, Unintentional Humor: Celebrating the Literal Mind, which led to a career as an author and inspirational speaker. “I like it because it feels good to be on my own and I feel proud of myself for being on my own,” says Anderson, who is now 29. “I also like being in charge of my own schedule and responsibilities.”
Services and technology are often necessary for people with autism (severe autism in particular) to have this sort of autonomy. Linda Gund Anderson describes the varieties of support Brent relies on as Jenga pieces: “My fear has always been that they’ll take away one of the Jenga pieces, and he’ll collapse.”
But services cost money. The Centers for Disease Control and Prevention estimated that total societal costs of caring for children with ASD were over $9 billion in 2011. Support for services varies widely among counties, states and insurance companies, and recent budget cuts have reduced what organizations like Tri-Counties can provide.
“It’s a resource funding issue,” Francis admits. Graff and Kitzman also worry about the trickle-down effect budget cuts have on service providers.“Our vendors struggle,” acknowledges Graff. “They’ve had rates frozen for over a decade.” Kitzman blames low wages on the high turnover rate for caregivers — which can be devastating for people who respond poorly to change. “Ultimately it’s the folks we serve who pay the price,” Kitzman says.
Amidst all this discussion of money, treatments and budget cuts, one voice tends to get lost: that of the individual living with autism. “I don’t think people on the spectrum have much of a voice in the current conversation,” Capozzi states. “I suppose our difficulties with communication in general impede our ability to weigh in on things. However, I think it’s important to include the very people who are affected during the decision-making process. I am very interested in pursuing a career in advocacy, as a mediator or a lawyer. … I know what it’s like to have no voice at all.”
Based on a 2014 report, the CDC estimates there are more than 3.5 million people in the United States on the spectrum, and that one in 68 children will be diagnosed with an autism spectrum disorder. If more people can benefit from services, knowledge and technology, the way Capozzi and Anderson have, societal integration and acceptance should be achievable.
“Autism is not a bad thing. It gives people special gifts like being incredibly intelligent and artistic skills,” Anderson says. “It just depends on how much effort you put into helping that person with their challenges. If I didn’t get the services and support, I would be a very different person than I am today.”
Tri-Counties Regional Center
Autism Society of Ventura County
The Arc of Ventura County
Channel Islands Social Services
This story has been modified from its original version to correct Brent Anderson’s city of residence.