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Ryan's Isolation: A Local
Family's Search for Asperger's Resources
by Heather Becker, January 2008
Even though he is only three and a half years old, Ryan’s height makes him look closer to five. His thin body is constantly moving as he plays throughout his living room littered with discarded toys and cereal--currently one of only four foods he will eat. He prefers to play alone. When he attends preschool and group play centers he likes to run through circle time with arms outstretched--smacking other kids in the face.
When he is overwhelmed he flaps his hands, covers his ears, shakes his head, and is soothed by repetitive, sensory movements of touch and sound. Every small detail that doesn’t go Ryan’s way results in a major meltdown of tantrum and hitting. Going to the playground, which would excite most kids, causes Ryan to cry and resist.
Because of these behaviors, Ryan is no longer able to attend preschool and his mother, Suzanne Hardy, is forced to care for he and his two-year-old sister at home. By making daily phone calls and posting online ads--Hardy now struggles to find resources and connect to other parents with similar experiences here in the Bay Area.
Ryan has been labeled as having Asperger’s syndrome, a hereditary disorder on the autism spectrum that is characterized by social isolation and peculiar behaviors, especially during childhood. People with Asperger’s, or Aspies, often tend to suffer from sensory overload, being overly-sensitive to ordinary noises, sights, and smells that wouldn’t affect most people. They can also become highly focused in a single area of interest, creating what could be described as an obsession. Because Asperger’s disorder is a developmental syndrome that rarely causes noticeable speech impairments, diagnosis can be difficult. What is observed as simply odd social behavior causes many Aspies to be misunderstood and often made fun of by their peers throughout their lives.
“If we stay at home, watch some DVDs, do some puzzles all day, let him eat all the chicken nuggets, cereal and goldfish he wants whenever he wants, then we have no problems,” says Hardy. “It's when we go out and have to deal with the outside world, or school, that we have problems…We're pretty much prisoners in our own home for now until we can get some help.”
Hardy, who also suffers from Asperger’s, has known since Ryan was an infant that something was different. She had to pad down her living room so that when he crawled and moved he wouldn’t hurt himself. As he got older he searched for sensory stimulation through constant movement and energy.
“When I took him to the park he would run around and around the perimeter of the playground,” Hardy says. “As a mother, when you see the other children sitting there quietly with their pail and shovel, you can tell ‘my kid’s different.’”
Hardy used to work in the realty business but now taking care of her children and finding local resources for Asperger’s has become her full-time job. Her large expressive eyes are red and tired as she sits sorting through a large binder stuffed with letters, email correspondence and phone call conversations--records of her daily struggle to find help for her son.
Having to fill out mountains of paperwork and actively seek out resources causes Hardy’s energy to wane. Because Ryan’s erratic behavior often keeps the family at home, she continually searches for a support group that meets closer to their home in Potrero Hill.
“Everyone says there are resources out there but I haven’t had any luck,” says Hardy. “Asperger’s often falls through the cracks.”
When searching for support groups specifically for Aspies in San Francisco one faces great difficulty--numbers are disconnected, resources have been temporarily discontinued or they simply don’t exist. This lack of support groups for those with Asperger’s, and the families it affects, has caused women like Hardy to search for help on their own.
Since Asperger’s is a relatively new disorder, first diagnosed in 1944, many of the available resources in the United States still fall under the large spectrum of autism. Over recent years the Support for Families Network in the Bay Area, which provides a number of support groups for families of children with disabilities, created its own Asperger’s group which broke away from the larger autism group, yet it has been postponed by the Network.
According to Nina Boyle, manager of the Family Resource Center at Support for Families, the program allows each group to define what it is they feel they need the most, whether it is socializing or getting practical training. The Asperger’s group wanted to focus more on the socialization aspect of their kids with other Aspies, a rare opportunity for many of the families involved.
“For families [Asperger’s] can be a very isolating experience. As a parent, support needs to come from many different places,” Boyle comments. “Support groups are an opportunity for families to come together and share experiences even though their children may be very different.”
For Boyle, who is a mother of a nine-year-old boy with cerebral palsy, support groups even if they are formed online, can open an entire new world for parents.
“Support groups help to normalize your experiences as well as being a way to get in touch with different resources. As a parent I was looking for resources and I found an online support group which was a huge support for me,” says Boyle. “It really depends on where you find them, which groups you communicate with and what the families needs are. Although there is a certain dynamic when there is verbal discussion, it adds to the experience.”
Until recently Hardy has never met another Aspie outside her own family. She tried joining a general autism support group in South San Francisco but found it poorly conducted.
“They need to decide if they want to socialize with their kids or sit around and talk about their challenges,” says Hardy who does not feel it’s appropriate to discuss her son’s behaviors in front of him. “Two of the children had Asperger’s and two of them autism, and really it is so different.”
Hardy, therefore, has a strong desire to meet and socialize with those who have Asperger’s, yet because of Ryan’s hurtful behavior, she is unable to take her son to many playgroups and social events.
“Based on growth charts and percentages, he is expected to be 6'5"-6'6" tall when fully grown,” shares Hardy about her son. “He could seriously hurt someone if he still hits at that age. I'm very concerned that I will fail in helping him.”
Debbie Vuong, a San Francisco psychotherapist, believes that the most beneficial option for families like the Hardy’s is to work closely one-on-one with a psychologist who can address the acting out and hitting first, and then seek social groups.
“It’s difficult for [Suzanne] to manage him and manage all these different feelings at once. She’s not able to get the support she needs from a group in the beginning,” explains Vuong. “Support groups are good for parents because they won’t feel alone but the downside is since there is such a large spectrum, they can come back from the group feeling, ‘why aren’t these other parents dealing with the same behaviors?’”
Shannon Connolly, who has worked with children with disabilities for over 13 years, currently watches two children with Asperger’s. Although she agrees that some support groups can do more harm than good by passing along incorrect information, she feels most groups can be a family’s saving grace.
“Parents do get together and learn from one another,” says Connolly, who minored in special education at Chico State. “Although their children might be displaying different types of behavior it is very likely that the kid could be reacting from the same thing but in a different way.”
For adults with Asperger’s, reaching out through support groups and socializing with other Aspies has helped them come to terms and even prefer the way they approach life, process information, and interact with others.
After self diagnosing herself with Asperger’s, 40-year-old Debra Schiman was officially diagnosed five months later in her home country the UK. Since then she has benefited from the full realization of who she is.
“It made it all right that I enjoy my own company. That sometimes I am too direct and upset people. It was a chance to look at my behavior and adjust so it doesn’t upset people as much without selling out from your own personality,” says Schiman. “I am more the in-your-face kind of Aspie--perhaps too in your face. I ask things that are too personal or make remarks that are not taken well. Not to be deliberately rude because if I think something I say it, or if I am curious I ask it.”
Schiman feels that it’s important for both Aspies and their families to join groups where they can learn how to communicate together and make decisions that stress the Aspie’s independence and development.
Recently at a neighborhood playground, Hardy met a woman whose husband has Asperger’s and forming an instant bond, they decided they would create their own support group here in the city.
“I figured if I talk about it left and right I will eventually find people,” says Hardy. “And that’s fine, I’ll take the initiative--I mean there must be people out there with it.”
With her plans of starting her own support group, Hardy will be able to fully address her needs and connect in a way that she wants with those who understand what she is going through each day of her life.
“Boy our world was different a year ago. Now I feel like I’m clueless,” Hardy says, reflecting on life before Ryan’s diagnosis. “People always tell me, ‘you’re doing a great job,’ and I wish they wouldn’t say that. I wish they would simply say ‘it’s going to get better--don’t jump off that cliff.’”
For more information or to get involved with Hardy’s support group, email Heather Becker at heatherlbecker@gmail.com