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
3 comments:
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.
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,
Pam
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!
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