Program Aims To ‘Revolutionize’ Autism

Program Aims To ‘Revolutionize’ Autism

Fairfax-based group offers autism training for parents and consultants.

Finding in-home help for autistic children may soon become a little bit easier, thanks to a newly-formed academy that teaches parents and consultants a variety of ways to work with autistic children.

"We expect to revolutionize autism not only in Northern Virginia but around the world," said Shannon McGrail, a member of the board of directors of Parents of Autistic Children-Northern Virginia, a support group for families. She is also the director of the Verbal Behavior Instructors Academy, a training course for therapists and parents to help them better work with autistic children.

Many families pay as much as $80 per hour for their in-home consultants and therapists, a hefty sum considering most doctors recommend anywhere from 10 to 40 hours of in-home treatment each week, McGrail said.

Add to that price the severe shortage of qualified workers, and the demand grows even higher for these helping hands.

"The therapist we have for our child is a godsend and we know we’re lucky to have her," McGrail said, adding that their therapist will accompany her family on vacations and trips so her son’s treatment can continue.

Even if a family has the money to pay for a top-notch therapist, there is a year-and-a-half waiting list through most service providers, she said.

For the inaugural series of classes and workshops, eight students were paired with instructors to learn techniques for helping autistic children slowly come out of their shell and improve their behavioral and speech skills.

Each student was assigned to a family and worked with their instructor and the family together starting in June, and will complete their first series at a graduation ceremony in December, McGrail said.

Initially, each student was encouraged to make themselves into "a giant chocolate chip cookie" for their child, McGrail said. If the child came to see the student as a rewarding, positive person to have around, not something threatening or scary, their presence alone would eventually become a reward, she explained.

STUDENTS WORKED with two kinds of therapy techniques: following the child around and using their patterns and home environment to teach words, colors, numbers and other useful items; or using flashcards and routines while sitting at a table so the child would recognize a variety of words based on a kind of sign language.

Autism is considered a spectrum disorder, so each autistic child has different levels of abilities and needs. Not every child will respond to the same stimulus or situation in the same way, McGrail said. One day, all the students and children were brought together to see how they all interacted. This gave teachers the chance to practice a variety of teaching methods with other children to help them become more flexible, said Meredith Singletary, now a resident of Richmond who worked as an instructor during the course.

Her student, who was a mother with an autistic child, wanted to be more effective in her training. While the summer started with Singletary visiting the home once a week, their work eventually went to frequent e-mail consultations.

"We discuss what’s working, what isn’t and what she can try to help the child better," she said.

The pair had set some goals for the child to achieve by the end of the course based on their comfort levels and abilities, and Singletary said the family is very happy with the progress.

"At first, the mother was a little apprehensive because she wanted to help her child, but she became more confident as the summer went on," she said. "As a result, her child made great progress."

Johanna Ramos-Boyer, another parent involved in the course, said the training was about more than making parents feel better about working with their children. Most of the students in the course were not parents but consultants and people already working with children who wanted to improve their abilities with autistic children.

"Right now, one in every 150 children is born with autism, but we don’t know much about it or what causes it," she said. "That’s a staggering number of children, it strikes more than juvenile cancer, diabetes and all other diseases combined."

EARLY DIAGNOSIS and intensive research by parents and doctors for each child will help to determine which course of training works best, but patience is key to understanding where each child falls on the autism spectrum, Ramos-Boyer said.

"In most cases, treatment should start when the child is about 2 years old," for it to be most effective, she said.

George Mason University student Brittney Taylor was among the final students to sign up for the course, but her determination and enthusiasm for the training allowed her to take on two families at once.

Taylor said she had been involved in an adaptive recreation program through Fairfax County and taught some classes with autistic children before, but after the training she has changed her major to therapeutic recreation to reach more children.

"My mom has always told me I have a gift with kids, I don’t get annoyed easily and I can be pretty patient," she said.

Taylor said a verbal behavior workshop led by field leader Vincent Carbone was especially helpful in her training, as was the day she worked with several children other than the ones assigned to her initially.

Part of her work included reminding the parents that there is no quick fix to "curing" or "solving" autism, or making a child more verbal or better able to interact with others, Taylor said.

"One of the children I worked with was non-verbal, so if he were upset, he’ll have a fit for two hours and there’s nothing you can do to calm him down," she said. "The training showed me that his being upset wasn’t his fault, it was mine. I did something wrong that made him feel unsafe. I had to go back and figure out what it was so it didn’t happen again."

Despite the frustrations and little setbacks that are bound to happen, McGrail believes the course will help in the long run, if only to make more trained professionals available to families who need them.

"There are only 44 board-certified behavior analysts in Virginia right now, which is about 80 less than we need," she said. "These are the people we’re training. The people we train will help set up an in-home program for parents so when they get a therapist, they’ll be ready to go."

McGrail’s son, now in second grade at Laurel Ridge Elementary in Fairfax, has come so far because of his therapy, he is in a mainstream classroom.

"We went from being told that he was going to have to be in an institution and being a scary kid to a place where now, he has friends," she said.