Sunday, September 27, 2015

The California Autism Lawsuit: Love Your Neighbor?

This past week, the media has reported the case of two families in Sunnyvale, California, who filed a lawsuit against the parents of a boy with autism. Filed in June 2014, this lawsuit is now being heard in court. [To read a news report of this case, please click here.] The plaintiffs allege that the parents, who were their neighbors, did not do enough to control their now eleven-year-old son with autism and that this boy terrorized their neighborhood. Moreover, they claim that his aggressive presence in the neighborhood could reduce their property values. Even though this family moved out of the neighborhood a year ago and say they have no plans to return, neighbors fear they may return to their former home that they have not yet sold.

Since there are at least two sides to every story, the judge must determine what was happening in that California neighborhood. Are the neighbors filing the lawsuit intolerant of autism, or are they simply protecting their children from an aggressive child? Are the parents of the child with autism doing the best they can in a difficult situation, or are they negligent, failing to control their son from harming others? The courts will decide.

According to the neighbors, the boy with autism repeatedly kicked, hit, slapped, and bit people, especially younger children. As one plaintiff notes: “For us this case is not really about autism. It’s about the safety of our children. They were attacked on multiple occasions.”

Moreover, they claim that the boy’s parents and babysitters did not properly supervise him, which led to his being a threat to other children in the neighborhood. “This has to do with the parents’ responsibility to control their child,” said one of the neighbors.

Of course, parents of children with autism fear that this lawsuit could encourage intolerance toward their children and potentially generate similar lawsuits. This week, the Huffington Post published an online response to the California lawsuit by autism mom and activist Bonnie Zampino entitled “My Son Has the Kind of Autism No One Talks About.” [To read this essay, please click here.] In her heartfelt essay, she discusses the lack of true autism awareness, which she attributes to media feel-good stories about autism emphasizing rare achievements and ignoring problems associated with aggression in autism.

Drawing from her own experience with her son who has struggled with autism and aggression, Ms. Zampino explains the isolation that comes with a child whose behavior is not socially acceptable. She notes, “Because I didn’t know what my son was going to do to other children, we stopped going to the park.” She adds that they also stopped going to the library, birthday parties, and play dates.  As a result, she states, “Because of my need to isolate my son, I also isolated myself, too.”

Moreover, she challenges the comments by the plaintiffs in the California lawsuit who claim that their case is not about autism. She points out that a lack of autism awareness has caused these neighbors to fail to understand the issues the family whose son has autism are facing. She notes, “Autism can be sad. Autism can be messy. Autism can be violent. Autism can be isolating.” However, she also believes that once people truly become aware of autism, even the often hidden negative aspects, “We will become a true village, including those who can model appropriate behaviors and those who are trying so hard to learn them.”

Having dealt with Alex’s aggressive behaviors linked to autism, I know how terrifying and upsetting this behavior truly is. While I can empathize with those autism parents who are isolated from the rest of society because their children’s behavior poses a threat to others, I think this is necessary until their children’s behavior can be managed. Until our children learn to interact appropriately, we must protect others from their aggression. Moreover, we need to respect that other parents have the right and responsibility to protect their own children, just as we want our children to be protected from those who might harm them.

For long periods of time, we had to isolate Alex from the world because we could not trust him to behave appropriately. Ed or I would run errands such as grocery shopping alone while the other stayed home and supervised Alex. We could not do typical family outings because we were not a typical family; we had a child with autism who was overwhelmed in social situations and overreacted to sensory stimuli. We could not attend family gatherings because we never knew when he might suddenly take off his clothes, say inappropriate remarks, or physically attack someone out of the blue. To protect his younger cousins, we just stayed home. Although our self-imposed isolation was sad, it was necessary until Alex could behave himself in public.

Certainly, we need more autism awareness in our society, but the kind of publicity the California lawsuit brings encourages even more negative attitudes toward autism. Autism parents must teach our children to behave appropriately, even when it is difficult for them and for us. We must teach our children socially appropriate behaviors if we want them to live and interact in society. Pity parties and whining about how hard our lives are does no good for our cause. Although we may say that our children use behavior to communicate, another parent doesn’t care when our kids are inflicting bodily damage upon theirs. If we can’t make our children behave, then we need to protect them and others by isolating them.

Here’s the reality: children with autism grow into adults with autism. We must address aggressive behaviors, whether it be with therapy and/or medication, when the child is more physically manageable. As upsetting as aggressive behavior is in children with autism, adults who exhibit these behaviors pose true safety risks to others and themselves. We have explained to Alex that as a six-foot-tall young man, he cannot touch other people because he frightens them. We have also explained that someone may mistake his intended friendly gesture as a threat, and they may shove or punch him to get him out of their way, not knowing or caring that he has autism. Indeed, the media has reported cases where adults with autism have been arrested for assault, and in one terrible case, even shot to death by a man protecting his family from the aggressive behavior of a neighbor man with autism. As autism parents we must try to make our children understand the rules of society if we have any hope of their living as part of the community who doesn’t always understand them.

While the case of the Sunnyvale, California neighborhood filing a lawsuit instead of being able to cooperate and resolve their problems reasonably is disappointing, poet Robert Frost had the right idea when he wrote, “Good fences make good neighbors.” Until we help our children with autism to control their aggression, we must keep the world safe from their behavior, and we must keep our children safe from those who do not understand them. Although we would hope that our neighbors could love our children, perhaps at times this is best done from a distance with a fence––literally and figuratively––between them and us.

“And you must love the Lord your God with all your heart, all your soul, all your mind, and all your strength. The second is equally important: ‘Love your neighbor as yourself.' No other commandment is greater than these.” Mark 12:30-31


Bonnie Zampino said...

You have some very thoughtful comments on this issue. I understand why you've made the decisions that you have and I believe that we must love our neighbors by being actively involved in the supervision of our children. But don't other's have the same obligation? Must the two be mutually exclusive or can parents on sides participate with their children's social interactions to teach and model appropriate behaviors? Great blog! Thanks for continuing the conversation! Bonnie Zampino

Pam Byrne said...

Dear Bonnie,
How nice to hear from you! Your essay that I referenced was excellent, and I appreciate how candid you were about your experiences. As you say, autism is messy, and people need to know that.

In an ideal world, parents of typical kids would help supervise play dates with our kids and welcome our kids with open arms. I'm sure some of those good-hearted souls exist. However, many people don't understand autism (which is all the more reason moms like us need to share our experiences!) and fear our kids being around theirs. After reading some of the cruel comments in response to your blog and the news reports of the California case, we see how much some people despise our kids, which is sad.

If we want our families to be ambassadors for autism, we will need to present our kids at their best with our supervision. Now that Alex has his anxiety under control most of the time and has learned appropriate social skills, we take him places daily so that people see what an adult with autism can be. Most people are very warm and receptive to him, and we have been pleased with the kindness strangers show him. A few years ago, when he was hitting, spitting, and kicking, their response would not have been positive, and we understand why, which was why he was basically under our imposed house arrest. People do not take kindly to adults who behave that way, even if we explain they have autism and severe anxiety.

Thank you for starting the conversation. I appreciate your perspective and your writing, but I especially appreciate all the work you have done with your child because I knew how much love and devotion that takes. Wishing you and your family all the best!

Take care,