Like most young adults her age, 19-year-old Sara Goralnik wants one thing: a life outside the watchful eyes of her parents.
“I just want my independence,” said Goralnik, a Phoenix native. “My mom and dad have always hovered over me.”
They’ve had reason, according to Goralnik’s mom, Cynthia: Sara is one of an estimated 1.5 million Americans diagnosed with an autism spectrum disorder and the first time she tried to navigate college life, “the independence was overwhelming to her.”
Thanks to a groundbreaking new residential program in Tucson, however, students such as Goralnik will have better chance of success.
Chapel Haven West,1706 N. Park Ave., a two-year residential program for young adults with autism spectrum disorders, launched June 30 in partnership with the University of Arizona.
The 16 students in the program will be integrated on the campus in a number of ways, but the biggest connection is with the department of speech, language and hearing sciences.
Betty McDonald, a speech pathologist and an associate professor at UA, will supervise UA graduate students as they work with Chapel Haven students on social communication skills.
In return, the graduate students will gain data on Chapel Haven’s approach for their research.
“What’s nice about this program is it’s affiliated with the university because it will be serving some students who have the potential to come here,” said Sue Kroeger, UA’s Disability Resource Center director.
“But even for those who can’t attend the university, they are still getting a higher-education experience by being on campus for their classes. The standard has been a rehabilitation or medical model, but Chapel Haven is about education, integration and inclusiveness.”
Chapel Haven West is a branch of Connecticut-based Chapel Haven Inc., the country’s only combined state-accredited special education and independent living facility for adults with cognitive disabilities.
Autism is a brain disorder affecting a person’s ability to communicate, reason and interact with others. People with autism are socially awkward and miss obvious social cues.
For instance, if Mary is talking to John and John looks frequently at his watch, Mary will get the hint that John is either bored or wanting to exit the conversation. People who have autism or Asperger’s syndrome – sometimes called “high-functioning autism” – would either not notice John’s behavior or dismiss it as unimportant and keep talking long after it is appropriate.
Because of that, they frequently have difficulty with jobs, friendships and – as was the case with Goralnik, who attended UA last fall – higher education.
The Chapel Haven West program centers on helping students develop “social communicative competence” so they don’t miss those cues, said Karin Byrer, director of Chapel Haven.
“Social thinking is what people on the autism spectrum don’t do,” Byrer said. “It is the hidden curriculum, the things we take for granted in communication, and that will be taught by the UA speech and language pathologists.”
Not all Chapel Haven students will take classes at UA during the first year of the program. That will depend on their skill-set and their individual goals, but all will take Chapel Haven classes on the UA campus, as well as use the university’s facilities.
In addition, The Disability Resources Center and the Strategic Alternative Learning Techniques Center will offer classrooms for use by Chapel Haven West, and SALT staff members will learn how to help autism spectrum students best matriculate to UA,” said Betsey Parlato, president of Chapel Haven Inc.
“No other program that we know of teaches this segment of the population in a way that simulates what it is going to be like in real life,” Parlato said. “That’s why we have an apartment building instead of dormitory style and why we teach them in a higher-education format. . . . By the time your two years are over, you should be in college or employed successfully.”
Chapel Haven’s curriculum centers on blended subject areas including math, science and language arts, but also adds life skills, vocational training, wellness and personal enrichment.
Worked into everything, however, is the focus on social thinking, which is why Amy Merritt-Smith chose the program for her son, Mackenzie.
“He has certain topics that he’s incredibly interested in – like presidential politics – and he assumes everyone else is, too,” she said. “I hope he can learn how to initiate and maintain balanced friendships. I hope he can learn to think of the other person’s perspective.”
The annual tuition for Chapel Haven is $49,500 and includes housing, a $400 monthly stipend and $2,000 for tuition at UA or Pima Community College.
There were more than 100 applicants for this year’s 16 slots said Judy Lefkowitz, Chapel Haven’s vice president for admissions.
The students were chosen based on their potential to complete the two-year program and transition to completely independent living.
In addition, they had to be motivated and have parents who supported that independence, Lefkowitz said.
McDonald said Chapel Haven is unique because most autism spectrum programs focus on children and adolescents.
“Chapel Haven opens the door for our department to be on the cutting edge to serve young adults,” she said.
“Services to high-functioning autistic and Asperger’s adults need to continue through life – autism isn’t the kind of condition you grow out of – so it’s important for our students to get this training.”
ABOUT AUTISM AND ASPERGER’S
Both Asperger’s syndrome and autistic disorder are subgroups of a larger diagnostic category called autistic spectrum disorders or pervasive developmental disorders.
Autism is a brain disorder that affects a person’s ability to communicate, to reason and to interact with others. It is a spectrum disorder that affects individuals differently and to varying degrees of severity, and it is often found in combination with other disabilities.
Asperger’s is a milder form of autism and the onset is usually later with a more positive outcome.
Autism is four times more common in boys than girls, and it is found equally in all walks of life and in all populations around the world.
Signs of the disorders vary. For autism, signs include:
• Aloof manner; difficulty mixing with others
• Repetitive movements (hand-flapping, rocking)
• Little or no eye contact; may not want cuddling
• Uneven gross/fine motor skills (may not kick a ball but can stack blocks)
• Severe language deficits
• Echolalia (repeats words instead of responding)
• Insists on sameness; inflexible about routines
Signs of Asperger’s include:
• Engaging in one-sided, long-winded conversations, without noticing if the listener is listening or trying to change the subject
• Showing an intense obsession with one or two specific, narrow subjects, such as baseball statistics, train schedules, weather or snakes
• Appearing not to understand, empathize with or be sensitive to others’ feelings
• Having a hard time “reading” other people or understanding humor
• Speaking in a voice that is monotonous, rigid or unusually fast
• Moving clumsily, with poor coordination
Sources: Tucson Alliance for Autism http://autism.web.arizona.edu/
and the Mayo Clinic www.mayoclinic.com