Mental Health

By: Jenna Katz, Aalok Karambelkar, Kelly Crews, David Cernikovsky

Picture courtesy of University of Rochester

Henry is an intellectual. He loves reading, seeing art movies at The Little Theatre and has a fantastic sense of humor.  At 21 years old, Henry has also been arrested roughly 12-15 times since age 13, often for minor crimes that most people would be able to talk themselves out of. But Henry is not like most people. Henry was diagnosed with Asperger’s Syndrome in third grade, after having previously been diagnosed with Atypical Attention Deficit Disorder and later with Pervasive Developmental Disorder – Not Otherwise Specified.  

Although Henry continuously faces struggles in his daily life, family has proven to play a key role in helping him to lead a life that he deserves. His mother, Susan Mustard, a parent advocate for Hillside Family of Agencies, has struggled for years, fighting on his behalf.  Mustard blames the existing societal institutions for Henry’s arrests. “He doesn’t understand the context of authority and because he didn’t have the support and structure that he needed, he vandalized some stuff,” she said of his most recent arrest.  If the appropriate services were accessibly to Henry, she argues, he would be more regularly stimulated and educated such that he would not feel the need to commit petty crimes.  “Even though it’s horrible and you don’t want your kid to be arrested, that’s the only way that [Henry] received some services,” Mustard said.  “Last time he was arrested he had to do community service where he worked for Meals On Wheals. He enjoyed it, felt stimulated and good about himself. Why does he have to get arrested for someone to reach out?”

Although it is often difficult and tiresome to fight the system in order to receive the necessary services for children with Asperger’s Syndrome and other mental disorders, there is some hope for those like Henry and their parents here in Rochester.

Asperger’s Syndrome is a neurobiological disorder, classified as a high functioning form of autism. Common characteristics include obsessive or repetitive tendencies, poor communication skills, lack of common sense, clumsy and awkward movements, and exceptional sensory sensibility. Those with Asperger’s Syndrome may also develop psychiatric problems such as obsessive-compulsive disorder, depression, bipolar disorder, attention deficit disorder and schizophrenia.

Mental disorders, like Asperger’s, take their toll, not only on the child, but often on the child’s family. Parents often experience stress, and often can develop problems with disorders like depression or anxiety themselves.  “A lot of parents feel that they are the only ones that this has ever happened to. There’s a lot of feeling like there’s no control. That also turns into there’s no hope,” Mustard said.

In addition, a disapproving and often ignorant society can take its toll, not only on the child, but on the parents.  Unlike an illness that presents itself physically, like cancer, mental illnesses, despite often being as debilitating as physical illnesses, are often seen as being the fault of the family, or of the child.  “When people see a child in trouble, it appears that the parents aren’t being those ‘model citizens’ that they are supposed to be. It’s also attributed to lack of awareness,” says Dr. Jagannath Karambelkar, Medical Director of the Children’s and the Adolescent Units at Stony Lodge Hospital in Ossining, NY. “A lot of the times it is the parents’ fault, but just as often it’s not.”

Other burdens include one that’s common to those with mental illnesses: the fight with insurance companies. While the chance of getting help for treatment of mental illnesses has increased in recent years, it’s still a difficult fight for many. The public stigma that is often attached to mental illness brings up issues of whether the medical coverage is warranted.  “High blood pressure and diabetes are most often always covered” says Karambelkar. “Depression and schizophrenia are quite different and people just can’t afford to pay out of pocket.”

Hillside Children’s Center, part of Hillside Family of Agencies, offers mental and behavioral disabilities services, among others, to children and to their families. While not all children qualify for Hillside’s services, those who do are given a comprehensive treatment plan that not only includes an array of therapists and other staff members, but which also includes their families.  “Our primary goal is to let the kids trust us. We find a counselor who they feel comfortable talking to and we make a life plan for them,” Sally Bohne, Hillside’s community relations manager said.  Hillside is unique in their inclusion of the parents in creating the treatment plan for their patients.  “We see the family as the partner in our treatment process. They know their children best. [This way] we learn so much more and the parent starts to relax,” Bohne said.

Karambelkar also stressed the role of the parents in the treatment. “How you come up with a treatment plan is to get everyone involved including the parents to the extent that they can. You develop a behavioral plan by helping the parents reward positive behaviors and try to extinguish negative behaviors. Parents have to be partners in that.”

At Hillside there are programs that help parents understand not only the obstacles for their child, but also for themselves.  Monthly Parents as Partners meetings allow parents to establish additional support networks with other parents. Parents can share information with one another and learn about services offered through Hillside and other organizations.

As a parent advocate for Hillside, Mustard aids parents in receiving the necessary services for their children and teaches them how to advocate for these services themselves. While her experience as a parent advocate provides comfort to parents who have often gone through many other services and have been denied others that most parents would take for granted, she stresses that the best support for parents is other parents.  “I try to find any way I can to bring parents together,” Mustard said. “We have focus groups for parents where we try to ask them what works. Once parents get in the same room, parents feed off of one another.”

Although it is often tiring, Mustard stresses the importance of challenging systems in order to ensure the best future for children with Asperger’s Syndrome and other disorders.  “The number one thing to advocate for is your kid. To really make changes, you have to challenge systems and laws. It will probably help another kid, not your own. But, you always benefit from what another advocate did,” she said.

Although children with psychiatric and behavioral disorders do not always receive the services that children without these disorders receive, children can still be successful in their lives.  “I think that a parent has to change their perception of what they see as successful,” Mustard said. “If he’s happy, if his basic needs are met, I see him as successful.”

While society may be judgmental of the visible effects of Aspurger’s, SP Syndrome Mustard emphasizes the importance of looking beyond disability. “The disability is only part of who they are, so we should focus on what else makes up that person. Everyone has their strengths and their good points,” she said.