Christine Cucinello knew her daughter, Makayla, had autism.
But Makayla’s teachers didn’t share her mother’s view.
“That was always my fight,” said Cucinello, of Rocky Hill. "Her teachers said, 'Oh, she’s quiet. She’ll mature. She’ll grow out of it. She’s shy. ’ "
It is the plight of many parents of girls with autism, which is four times more prevalent in boys.
And the symptoms are often more subtle in girls. They tend to stay under the radar longer, and are very often diagnosed much later than boys. That means they can suffer unnecessarily during the early school years.
Because autism in girls is relatively rare, there has been little meaningful research on how they respond to therapy.
The Yale Child Study Center is attempting to fill that research void. Pamela Ventola and her team have parlayed several grants to go on an all-out recruiting search throughout Connecticut and New York for girls aged 6 to 9 who have been diagnosed with autism. They are looking for 24 families; five have enrolled so far. The work, three years in the making, began Tuesday and will last several years.
During four months of study and play-based therapy with each girl, Ventola’s team hopes to gain a deeper understanding of the sex-based differences between boys and girls with autism, how girls respond to treatment, and how the girls perceive and react to social signals.
While they’re at it, the team is also examining whether there are genetic differences between autistic girls and boys, and whether supplements of the oxytocin hormone, which is associated with social bonding and feelings of attachment, might be effective in children with autism.
“Until now, girls have largely been excluded from research because it’s hard to recruit a meaningful sample of girls,” said Ventola, an assistant professor in the autism program at the Child Study Center.
…The other day, Ventola showed visitors around the warren of treatment rooms. They are fitted with one-way glass along one wall, through which parents watch from an adjacent room. In another lab, two blocks away on the bustling medical school and hospital campus, is the team’s practice MRI machine, complete with the buzzing sound, so the girls can get used to the experience.
During the real MRI, between relaxing cartoons, the girls watch two videos: One is of lighted dots in a human shape, strolling and doing other “biological motion.” The other is of random dots, buzzing around, knocking into one other.
The researchers look to see if the brains of autistic children register different reactions to the two videos.
Before treatment, there is very little response to the human motion in the part of the brain linked to social recognition. After treatment, the reaction to the human motion is usually much more powerful.
But is there a difference in the brain responses of autistic boys and girls? Ventola and her team are trying to find out.
“Are we changing how they are thinking about, and reacting to, social information?” said Ventola.
Parents are a major part of the clinical study, which is funded in part by Women’s Health Research at Yale. The moms in particular are taught some of the therapies so they can continue them at home and keep the progress going. Ventola also speaks with the girls’ teachers and invites them to come and view a therapy session, so they might incorporate some of the approaches into their classrooms.
Cucinello, whose daughter went through an earlier four-month treatment program at the Child Study Center, said she has shared what she learned with her husband and her parents, so that they are also exhibiting more patience with Makayla, and enjoying more success in engaging her.
Cucinello, a hair-dresser, she said saw “great results” with Makayla after the treatment – more use of language, a calmer demeanor, more empathy for others, less anxiety over changes in routine, and less of a negative response to crowds, noises, and other stimuli.
Makayla was diagnosed when she was 5 1/2, near the end of her kindergarten year, which is later than most boys. Ventola said that a very accurate diagnosis can be made by age 2, but that many girls, because their signs and symptoms may not be as obvious, aren’t diagnosed until early school-age.
Cucinello knew her daughter was on the autism spectrum, in part because she saw the development of her son, born 3 1/2 years later..
“He was doing things naturally, intuitively. My daughter had to be taught everything,” said Cucinello.
Ventola said the girls pay a price for the late diagnoses. She said the girls often develop anxiety and depression because they are advancing in school, and encountering more complex social situations and demands, without support and treatment.
Makayla finished the four-month program in April and just completed her four-month follow-up last month, said Cucinello.
The follow-up is a complete behavioral assessment, including another MRI, to see if the treatment is sticking, Ventola said.
The therapy can have profound affects on the children.
Ventola sat down at a conference table, whipped out her laptop, and opened a video of a 5-year-old girl sitting in a …treatment room with one of Ventola’s therapists. It is the beginning of the treatment regimen. As the child asks repeatedly for a craft or a toy, she never looks up at the therapist. Slowly, the therapist begins to hold back toys and crafts if the child is not making eye contact.
“Who are you talking to?” the therapist says, eliciting a fleeting, sideways glance from the child.
Fast forward to the end of the four months. The girl is leaning over the table, propped on her elbows, engaging the therapist. She asks for a craft, her hand out, returning the therapist’s gaze, and speaking in fuller sentences. Her body, fidgety before, is still. Her eyes are locked on the therapist’s face as she waits, anticipating the next question.
Ventola seems pleased. She knows too well how isolating autism can be. Science has demonstrated with stunning clarity just how lost an autistic child can become in a social situation.
Cameras that track eye movement show that the children are drawn to the least socially relevant information in movies or scenes they are watching.
Ventola explains that autistic children will fixate on the background of the scene, a ball bouncing, a house, or a tree, rather than the speaker’s eyes or expressions.
“Think of what they are missing,” she says, “if they are not watching.”
