Sunday, December 23, 2012

The Tragedy of Sandy Hook

Since the December 14th senseless tragedy at Sandy Hook Elementary School in Connecticut, where twenty young children and six staff members were killed, people have been trying to come to terms with why and how something this terrible could happen.  Debates over the need for stricter gun control laws, along with plans for increased security measures in schools, as well as discussions of how to address mental illness have filled the media. However, rational minds simply cannot grasp the irrationality of such a horrific act.

In trying to explain the motive behind the actions of killer Adam Lanza, someone who knew his family explained that he had been diagnosed with Asperger’s syndrome, an autism spectrum disorder. This information immediately sent the autism community scrambling to distance autism from the dangerous and deadly behavior exhibited by Adam Lanza. Major autism organizations issued statements to declare that autism would not drive a person to commit such heinous crimes. Specifically, the National Autism Association posted on its website: “There is no link between planned violence and Autism Spectrum Disorders.” Similarly, the Autism Society of America addressed concerns, stating, “No evidence exists to link autism and premeditated violence. Many of individuals with Asperger’s syndrome who have committed crimes had co-existing psychiatric disorders. Individuals with autism who act aggressively typically do so because they are reacting to a situation.” 

If, indeed, Adam Lanza had Asperger’s syndrome, he likely also had another psychiatric disorder, as suggested by the statement from the Autism Society of America. Common comorbid conditions associated with autism include obsessive-compulsive disorder, bipolar disorder, depression, and general anxiety disorder.  In fact, one study reported that nearly 84 percent of individuals with autism spectrum disorder also met the criteria for diagnosis with an anxiety disorder. While autism alone presents many obstacles, the additional conditions create more problems that require intervention. Unfortunately, help is not always readily available.

Last week, a friend sent me a link to the online article “I Am Adam Lanza’s Mother” [To read this article, click here.] and wanted to know my opinion regarding this controversial essay.  In telling about her 13-year-old son and his extremely challenging and frankly frightening behaviors, Liza Long candidly declares that her son has the potential to be as dangerous as Adam Lanza. In the essay, she admits, “I live with a son who is mentally ill. I love my son. But he terrifies me.” Despite all her best efforts, she has struggled mightily to get him the help he needs, but she has found few and limited mental health resources available.  

Although Alex’s behavior was never as extreme as Liza Long’s son, I could sympathize with her frustration and fears.  As I have explained in previous blog entries, when Alex was fifteen years old, he began exhibiting aggressive behaviors that were completely out of character for our docile, gentle son. After having to wait six weeks to get an appointment with a child psychiatrist, who offered no real help and admitted that I knew more about autism than he did, we realized how little help is available. Thankfully, Alex’s doctor gave us a prescription for the sedative Ativan, which we could give him when he was having meltdowns to help calm his anxiety and curb his aggression so that Ed and I could physically manage him. Once he outgrew that phase, which was likely tied to hormonal changes of adolescence, we thought we would no longer have to worry about medicating him to keep everyone safe. We were wrong.

About a year ago, we again began seeing aggressive behaviors linked to anxiety in Alex (as I have also detailed in previous blog entries). Not only were these outbursts more intense than they were five years earlier, but the increase in Alex’s size and strength as a six-foot-tall young man made these meltdowns dangerous. As we desperately sought help for him, we kept running into dead ends. The waiting list to see a psychiatrist was nearly two months, and two trips to the local ER showed that they could only sedate him and send us home with more Ativan.  We had to make three calls over a three-month period to the police to help us safely control him when his aggression became so intense we could not restrain him ourselves. When we finally pushed for our local mental health facility to admit him as an inpatient, they told us that they would only admit him if he were homicidal, suicidal, or psychotic. Eventually, after asking many questions, we discovered that they would not admit him at all because he has autism, which they consider a developmental disorder instead of a mental disorder. No one seemed to know how to help Alex, and fortunately, my intensive Internet research led us to St. Anthony Memorial Hospital in Michigan City, whose Behavioral Medicine Department admitted him as an inpatient and provided him with the care he desperately needed.

While Alex was being treated in the hospital, we kept questioning the staff as to whether he had some co-morbid condition that was causing the behaviors that were so different from his typical self. The psychiatric nurse practitioner who has overseen his medication since he was hospitalized and who has considerable experience treating adults with autism explained to us that aggression is quite common in young men with autism. She diagnosed him as having autism with aggression and impulse control issues and felt certain that he did not have bipolar disorder or another coexisting condition. After weeks of trying various medications in various combinations and dosages, she finally found a therapeutic mix that keeps Alex calm so that we can manage him at home without fear. As we have been working to find services for Alex, some of the caseworkers who have read through Alex’s list of medications have commented about how many psychiatric medications he is taking, almost in a critical way. Although we wish that Alex didn’t have to be on any medications, until his potential for aggressive behavior subsides, we must keep him on this regimen so that he does not become a danger to himself or others. This is an unfortunate reality of our situation, but we are thankful that medications make him able to function, especially since Ed and I are responsible for his complete care. In thinking about Liza Long’s situation and wondering about what Adam Lanza’s mother faced with her son, I feel frustrated that finding help for children and adults with severe behavioral issues is so difficult for parents. Perhaps if interventions were more readily available, tragedies like Sandy Hook could be prevented.

In reading the profiles of the Sandy Hook Elementary students who lost their lives, I was saddened and surprised to find that two of the twenty children killed had autism. Through statements provided by their parents, Josephine “Joey” Gay was described as having nonverbal autism, and Dylan Hockley, who died in the arms of his teacher Anne Marie Murphy, also had autism. The vulnerability of these two children is heartbreaking, and the prevalence of autism, as evidenced that two of the twenty children were victims of this condition as well as victims of the action by a killer who perhaps had autism himself with coexisting mental illness, is also deeply concerning.

Certainly, Adam Lanza’s mother should not have kept guns in her home. Certainly, Adam Lanza needed help. Certainly, schools need to make security a priority. However, from our experience, the key issue that needs to be addressed is making help for children with autism and mental illness a priority so that parents can readily access resources instead of constantly seeking and fighting for them. Ignoring these problems will not make them go away, and the consequences for society could very well be—as we’ve unfortunately seen—terribly tragic.

“Do not stay so far from me, for trouble is near, and no one else can help me.” Psalm 22:11


phyllis said...

Pam, Your words are always so eloquent! You & your husband have faced so much-together with your son! I applaud you all!

You've made some excellent points here. So many people* have provided the hands-on services for these children, teens and adults; I'm afraid the size of the job is really under-estimated!

*(parents, therapists, teachers, aides, nurses, siblings and other care-givers)

I speak, as a mom of a boy only slightly affected with autism- his life is complicated with five physical afflictions-one of which was losing most of his sight at age 3. :-(

Although we're traveling different seas, I feel a kinship with you and your family. Thank you for your blog! I look forward to your comments, insights and encouragement.

God Bless you! -for all you do for your son and all the people that will benefit from your blazed trails.

Pam Byrne said...

Dear Phyllis,
Thank you so much for your very kind note. I'm always pleased to hear from fellow autism parents. Bless your heart, you have your hands full with your son, and I hope that he will continue to get better, despite the obstacles he has to face. Wishing you and your family many blessings!
Take care,

lisa said...

I am so happy to have found your blog Pam. Just read your article in Women's Day magazine. I have a son and daughter with autism. Can't wait to read more of your blog!