44. The Fear That Paralyzes

Early 2007

36 Yogananda — Sandy Hook, Connecticut

Nancy purchased a copy of the 2006 edition of The OASIS Guide to Asperger Syndrome: Advice, Support, Insight, and Inspiration. Studying the book closely, just as she had with the guides on horticulture when she was building her garden, she found it was full of advice that was relevant to her situation. It explained how children with Asperger’s were at increased risk for both Obsessive-Compulsive Disorder and anxiety, just like her son displayed. And there were sections on day-to-day parenting stress, and how to prepare one’s child for a psychiatric evaluation. “Parenting a child with a disability often demands being more protective and more defensive than we might be of a typical child,” read one section, among the several that Nancy bookmarked. “By the time you’ve received a diagnosis or come into contact with professionals, you may have had a lot of practice in feeling that it’s [just] you and your child versus the world.”

Nancy also highlighted a section about IEP teams, under the heading “WHEN PROBLEMS ARISE.” She placed another bookmark on the section “MEDICATION.”

Newtown High School

On days when there was a concert or a sports game going on at the high school, the tech club’s two-dozen-or-so students each had a job to do for Newtown Charter Cable Channel 17 — one related to either a computer, or a camera, or a microphone. These feeds would all be pumping into the control room, where the data is combined into one signal, and then bounced to Charter Communications through a modulator, and finally transmitted to every TV in Newtown. Production of live TV is a process that invites chaos, and the tech club’s efforts had to be carefully coordinated to make it all work.

After most school days, though, the control room was quiet, and dark. There was nothing to broadcast, and so anyone in Newtown tuning in to Channel 17 would find only a loop of local announcements, bumpered with a static “NTV” logo. And those were the times that Mr. Novia would find Adam there, alone in the chamber. “The only illumination of the control room is the monitors, and intentionally it’s dark in that room,” Novia would later explain. “He’d like that type of environment. He’d like that quiet.”

Adam had started attending more of the Tech Club meetings as his freshman year progressed. Novia had prepped his social environment in advance, making sure the other club members knew about him: how sensitive he was, that he didn’t really have any friends, and how they were just trying to get him used to being around people again. The other members knew to leave Adam alone if he started to withdraw; if he was in the building at all, that was progress. The control room was not total isolation, but more like a buffer, a security bubble that allowed the anxious teen some degree of calm — exposing him to normalcy at a comfortable distance. He couldn’t get that in his bedroom. “[Adam] likes isolation. He likes to be alone,” Richard would continue, speaking to Frontline. “But at the same time, not. He likes to be near, but not too close.”

Adam’s Latin teacher also noticed him becoming more social, as the school year progressed. Slowly, gradually, Adam began looking her in the eye when she spoke to him, and she could even swear that the thin, nervous boy was growing to trust her. “He started talking — that was a big thing”; one day, he even told a joke. Everyone knew he was book-smart, but Adam was so quiet, adults were often surprised to learn that he could also be clever.

Office of Kathleen Koenig, APRN — Yale Child Study Center

Nurse Koenig was only a few years older than Nancy. She was psychiatric nurse who had been working with autistic children since she was a teenager herself, in Massachusetts, and she specialized in assessing children and adolescents with autism and pervasive developmental disorders. As a research scientist, she had helped conduct double-blind placebo-controlled trials to test the effectiveness of medications in treating autism; at Yale, she helped develop a “Social Development Program for Children with Autism Spectrum Disorders.” Yale was held in great professional esteem for their work in these fields, and Nurse Koenig was a significant reason why.

Having read her colleague Dr. King’s report, Koenig had some idea of what to expect when, a few weeks later, Nancy followed up on King’s referral, and drove Adam back to New Haven for his first meeting with her.

In that first session, one of Koenig’s objectives would have been to find out if she arrived at the same tentative diagnosis as King — ultimately she did not, at least not quite. King had told her that Adam “suffered from a profound Autism Spectrum Disorder,” to which his OCD was secondary. But upon meeting the patient herself, Koenig suspected that Adam was “primarily debilitated by anxiety and Obsessive Compulsive Disorder” — in fact, she was skeptical of the notion that Adam had any Autism Spectrum Disorder at all. (Note: At the time, Asperger’s was a sub-diagnosis on the Autism spectrum; in 2013, the DSM V renamed both it and Pervasive Development Disorder, and merged them into the broader diagnosis of Autism, which was then sub-categorized by levels of need for services, instead.)

Writing her own initial evaluation, Koenig attached a list of the most prominent patterns in her patient’s behavior, observing that “Adam’s OCD severely limits his ability to lead a normal, well-adjusted life,” and that he “participates in multiple daily rituals — behaviors which he feels compelled to complete,” including:

Inability to touch doorknobs

Repeated hand-washing/showering

Obsessive clothes changing

Distinct avoidance of social interaction

Sensitivity to light

Koenig described Adam’s condition as “emotionally paralyzed.” That seemed to fit — Adam himself even acknowledged her insight: a police summary of the Yale files reports that Koenig’s patient that day had “agreed, in part, with the clinician that he was emotionally paralyzed by anxiety, but he did not feel that he suffered because of it, nor was he willing to take medication.” (In another document from sometime during the family’s interactions with Yale, Adam wrote, “I am unable to distinguish between my problems because I have too many.”)

The meeting with Nurse Koenig also marked a new development in Adam’s interactions with doctors: he had questions of his own. Over the course of their conversations, Adam asked Nurse Koenig several “specific questions” about OCD; then — apparently unprompted — he asked about schizophrenia, too. This condition had never been suggested by any mental health professional that had assessed Adam, and the exact questions Adam asked about schizophrenia are not known. Koenig simply records that she got “the sense that [he] was seeking information, but was unwilling to share if he was experiencing any of the symptoms of the disorders.” In response, she “discussed with him the clinical components of these disorders, [as well as] those of psychotic depression.”

Time ran out, and Adam’s session with Nurse Koenig ended. This time, Adam was not pouring sweat, or looking like he had been “tortured,” like with Dr. King. His parents scheduled another visit, for just after the New Year; and when that session came, it seemed to go well enough, too.

Nurse Koenig sent an email to Nancy after the January 2007 visit, apparently asking for feedback, and checking on Adam’s “comfort level” so far. In response, Nancy expressed some satisfaction with his progress — and shared a glimpse at just how deeply she feared her son’s anxieties may run:

It was actually the best meeting Adam has had with anyone. He was calm and conversational on the way home, which is very unusual… As far as his comfort level… it isn’t just that he is painfully uncomfortable — he actually doesn’t feel safe. He often tells me that he is frightened, even in our own home and obviously more so in public. I think it is the fear that paralyzes him.

His father will be bringing him over on Thursday so that I can get a couple of hours off, but please let me know if you need any input or if anything needs to be followed up at home.

My Place Restaurant — Newtown, Connecticut

As Dr. King had observed, Adam’s dependency on his mother meant that as he became more reclusive, increasingly, Nancy felt isolated too. Adam’s visits with his father (Peter coming to see Adam, since Adam didn’t want to go to Stamford to see him) were one of the few opportunities Nancy had to get out of the house. And more and more, when these opportunities for escape arose, she could be found at My Place.

By now, Nancy had long known that the owners of My Place were the Tambascio family — a mother and her two sons. They loved when Nancy came in; the regulars all knew her as a bon-vivant, who was well-off to the point where she could be generous whenever any of them were in trouble with money. And she still looked great, at 46 — her honey waves had turned ash blonde, and she took care of her skin. And of course, Nancy always dressed well.

But for all her blessings, the My Place crew didn’t envy her; while she usually kept her home-life private — “We didn’t talk about family, she came in to have a great time” — it was no secret around the bar that the years of trying to care for her youngest son had taken their toll on her. They knew she had been switching him around different schools, and Nancy said she had home-schooled him for a time; she had even brought Adam in once or twice, around the time he was starting high school, and the regulars could immediately tell there was something “different” about him. He was certainly nothing like his brother. Adam would just stand there in the restaurant, looking at the floor, waiting for his mom, never saying a word. “He was very quiet and reserved,” Mark Tambascio would tell the Associated Press. “Tough to communicate with. It wasn’t like he couldn’t speak, [and] he didn’t have a speech impediment. He was just a highly intelligent kid.”

Mark’s mother Louise would add, “He didn’t want to talk. You couldn’t have a conversation with him.”

Every once in awhile, Nancy would vent at the bar about her situation with Adam’s IEP team. “She’d say, ‘I have to bring him here; I can’t go there because of that; I can’t do this because of that; I have to be with Adam.’ Stuff like that. She couldn’t do a lot of things because she had to care for him,” Mark says.

They could tell the strain was wearing on her. “I always said that I wouldn’t want to be in her shoes,” Mark’s brother John would tell reporters. “But I thought, ‘Wow. She holds it well.’”

One of the regulars remembers a story Nancy told him: that at some point after she got her son to go back to school in the 9th grade, Adam had stayed home sick for a day. Sealed back up in his bedroom at 36 Yogananda, he refused to let his mother enter — but his anxiety was so intense that he still wanted her to be there for him. So, Adam would periodically ask through the closed bedroom door: “Are you there? Are you still there?”

Nancy, camped outside her son’s bedroom all day, called back to him: “I’m here… I’m here.”

Office of Kathleen Koenig, APRN — Yale Child Study Center

Nurse Koenig’s recommendations to Nancy had been simple: continue bringing her son to their sessions at Yale — and medicate him.

Like Dr. King, Koenig was confident that any effective treatment plan for Adam would have to include an SSRI. And she knew that Adam’s only previous psychiatrist, Dr. Fox, had said he already “urged anti-anxiety medication,” which Adam had flatly refused to take. But this wasn’t, legally, Adam’s decision — he was a minor, and his parents got to make those calls for him.

* * *

At some point near the end of January 2007, Nancy told NP Koenig something that she had kept to herself until then: that Dr. Fox was still Adam’s primary psychiatrist, and that he had been meeting Adam regularly, during the entire three-month period Koenig had been in contact with her patient.

Stunned, Koenig contacted her colleague Dr. King, who shared the same puzzled response; in staying silent about Dr. Fox, the family was withholding information that would be very important in interpreting Adam’s reaction to the therapy. What was going on?

Koenig immediately called Nancy back, and asked that she put her in touch with Dr. Fox, so that they could coordinate their efforts. On February 1, 2007, Nancy in turn wrote to Dr. Fox, giving him notice of the situation:

Subject: Adam

Dear Dr. Fox:

Kathy Koenig will be contacting you at some point to discuss Adam. She is a clinician at Yale and has background in Asperger in teens. Adam’s father felt it was important to get Adam into that group and possibly (and eventually) get Adam into a teen support group over there. Whatever her suggestions are, I would like your thoughts on. You have spent the most time with Adam, and have the best understanding of his situation. The Yale group and Adam’s father are concerned about Adam’s socialization and that is something I hadn’t really focused on. I have been more concerned with keeping him as comfortable as possible and just getting through each day. Although there will be quite a few people involved in this process (Yale, Dr. Ridley, Sherry [Newtown’s Special Education coordinator]), I really hope that you can take the lead role. Once everyone has had some Input, I was wondering if I could have an appointment with you to discuss what makes sense for Adam’s IEP.

Going forward, it was to be a team effort. Once Yale’s final evaluation was done, they could expect their recommendations to be considered for Adam’s IEP; they might even be able to determine his Primary Disability, and finally do away with the placeholders and second-guessing. If it was going to help Adam, everyone involved was determined to make it work.

* * *

Having opened the lines of communication between Yale and Dr. Fox, Nancy then did the same with Yale and Newtown; she signed a release that permitted “any and all mental health and educational information” about her son to be shared between the school district and the Child Study Center, and she told NP Koenig that Newtown wanted her to “provide her input to the school regarding Adam’s educational program.”

According to a treatment note in the records, Koenig then “agreed to call the school to describe her understanding of Adam’s presentation.” The record further shows that such a call did indeed take place — but there is no information regarding what was discussed, nor what recommendations were made by either party. Most significantly, there is no copy of Yale’s draft evaluation in the school district’s files; investigators would find the fax number to Newtown High School scribbled on a page in Yale’s documents, but there, the paper trail ends. Wherever the breakdown occurred, Yale’s input never made it to Newtown.

36 Yogananda — Sandy Hook, Connecticut

Adam wrote a short letter to his father, in the form of a list of video games he wanted. The games were apparently to be purchased for Christmas; Adam still didn’t like to celebrate the holidays, but since the rest of his family did, there was little reason to leave the gift budget untouched.

Soon, there was an Xbox 360 console in the home, the newest generation of gaming hardware. The Lanzas picked up the recently released Call of Duty 3 for it, and Adam was once again deploying as a soldier in World War II, this time making a push into Nazi-occupied France, and with more realistic graphics than ever before.

* * *

On February 4, 2007, Adam went to wikipedia.com, and created an account — indicating his intention to participate in the popular “encyclopedia that anyone can edit.” He chose a familiar username: Blarvink.

It appears that he did not immediately do anything with the account. He would just have it ready to go, whenever he wanted to make an edit.

February 2007

Stamford, Connecticut

One weekend, Adam spent an afternoon with his father at an arcade, and later a mall. Peter could see a change in his son’s behavior, in that he was at least “able to visit a number of stores.” Tolerating crowds, even for a little while, was huge. Peter wrote to Koenig about this development, saying that his son “has not wanted to do anything like that for over a year…. it appears the time that you are spending with Adam may be paying off.” He would be sure to schedule another session soon.

Still, there were aspects of Adam’s care that Peter found daunting; Dr. King had urged him to get his son into “a therapeutic day school setting,” which was actually a echo of what the Danbury ER doctors told Nancy two years before (though it’s possible that neither Peter nor Dr. King knew that part). Now, Koenig was advising the same thing: rather than periodic sessions, where it was simply explained to Adam what he should be doing, ideally, his therapy would be based around responding to his ritualistic behavior as it was happening. What he needed was a fundamental change in his environment. Not more time in his cave at 36 Yogananda.

Unfortunately, actually finding an appropriate therapeutic school was less of a sure thing; one program that Peter looked at was “for children with non-verbal learning disabilities and autism spectrum disorders” — but that school told him that Adam’s testing indicated his need for “a more therapeutic environment” than they offered, and so they recommended that the Lanzas “work with an educational consultant that specialized in helping families meet the needs of children with nonverbal learning differences.” So, Peter tried another school, one that was focused on serving “bright” children in a non-traditional setting; but they too demurred, explaining they were “not a special education school.” (They apparently added, significantly, that they were also not “a school for children with emotional disturbance” — though how that notion was even brought up is unclear.)

Peter repeatedly emailed Newtown school officials, to try to get them to communicate with Yale, as well as Dr. Fox’s office. In one message to the high school, he wrote that it would be “key” for his son to develop “necessary coping skills,” and that mental health care providers would be “crucial in such a plan” if Adam was to fulfill the goals put forth on his IEP.

In response, the school assured him that information from all parties would be incorporated into the new plan.

Peter sent several emails to NHS personnel between January and March, hoping to coordinate a meeting to discuss the “mental health services” aspect of Adam’s plan. But they never got around to scheduling it. And Peter was never able to find a therapeutic school for his son. He “express[ed] frustration with the difficult process,” according to investigators who reviewed his emails; Nancy had been cc’d on most of them.

* * *

Nurse Koenig was beginning to build a rapport with Adam. While he could not quite have been said to enjoy their discussions, he seemed to at least tolerate them, and in some instances, was observed — by both parents — to have been benefiting from the time he spent with her.

Then, suddenly, one day in mid-February of that year, everything went wrong. It happened during a one-on-one session, when Koenig brought up to Adam the one subject that Nancy had declared off-limits: medication. After that session, Adam angrily told his father that he did not want to go to the Yale center anymore, and that he “did not believe the process would help him.”

Peter wrote to Koenig to report this abrupt shift in feedback, and informed the APRN that Adam wanted to have him come along if there was ever going to be another session.

In her reply, Koenig had a reality check for Peter — she emphasized that not only was his son’s resistance actually a sign that the treatment was working, but that if Adam didn’t get help, his anxiety was not just going to stay the same; it was going to get worse:

The process of asking Adam to talk with me directly about what is going on is critical. I appreciate that Adam’s view is that he wouldn’t say anything differently if his father were in the room, but I think he’s wrong. His judgment about how social/family dynamics work in a therapy situation is no more on target than his views regarding doorknobs and hand-washing… He wants to control how the treatment goes because his anxiety is nearly unbearable if he can’t feel he knows what’s going to happen. I understand that. At the same time, he can’t control the treatment because his thinking is distorted and irrational. I can’t agree to follow his lead!

In fact, when I talk with him alone he has to respond, and last time I pushed him a bit. I am not surprised that he was angry, that’s OK… I told Adam he has a biological disorder that can be helped with medication. I told him what the medicines are and why they can work.

I told him he’s living in a box right now, and the box will only get smaller over time if he doesn’t get some treatment.

I’m fine to see him this week at 11. I am OK to talk with him and you at the beginning, but the session to address his issues has to be just him and me. I’d do it differently if I thought it would help, but I’m convinced it won’t. Let me know your reactions.

Peter wrote back. He agreed that his son’s opinion on medication was “no more appropriate” than his judgment on therapy itself. He told Koenig that he and Nancy would simply have to sit down with Adam and explain that it was not his choice; as his parents, they “were responsible for his care and well-being and that in that capacity, [they were] relying on the advice of a team of professionals.” In keeping with those recommendations, Peter said that he would explain to Adam, very plainly, that he and Nancy were “insisting” he take the SSRI.

This family conversation, or one like it, apparently did take place shortly thereafter. Adam submitted to the plan, agreeing to take the medication. Nancy picked up a prescription for Celexa, and told Koenig that Adam would begin the regimen shortly.

36 Yogananda — Sandy Hook, Connecticut

Two days passed.

On the third day, Nurse Koenig’s phone rang. It was Nancy Lanza, and she was very upset. She explained that she had given her son the Celexa, just as directed, and that Adam had already experienced severe side effects: most notably, that he was suddenly “unable to raise his arm.” She said that Adam “was attributing this symptom to the medication.”

Koenig couldn’t believe what she was hearing. She tried to explain to Nancy that unable to raise arm was not a side effect that could conceivably have come from taking an SSRI, and she urged Nancy not to abandon the plan. Nancy’s response, she noted, was “non-compliant.”

Later, Nancy wrote an email to the Child Study Center that elaborated on the “immediate and diverse” side effects Adam had been exhibiting, including “decreased appetitive [sic] and nausea… dizziness… disorientation, disjointed speech, and sweating.” She recalled of her son on the third day, “He couldn’t think. He sat in his room, doing nothing.”

Koenig replied again: some side effects, like those described, were not unexpected, and could be managed over time by tweaking the dosage. She again urged Nancy to continue having Adam take the Celexa, pointing out that his obsessive-compulsive disorder had apparently improved while on the medication.

Nancy fired back, cc’ing Peter: Adam’s side effects were “severe,” and he had been “practically vegetative” in his room toward the end — how could that be considered an improvement? She revealed that she had actually already spoken with Dr. Fox about the side effects, and, “We decided to discontinue the meds.” She added that this decision was made partly due to her fears about the side effects Adam was experiencing — and partly to determine if those side effects were “psychological.”

Finally, Nancy wrote an email to Peter. She related more details about Adam’s side effects from the Celexa, claiming that he “had lost weight” (apparently over the course of three days) and was so impaired from the meds that he “couldn’t even pour his own cereal.”

She then outlined the current state of affairs, as far as the treatment plan: Koenig was “wasting her time” with Adam, who now “loathed” her. Nancy told Peter she felt that the best course of action would be for Dr. Fox to assume the primary role in treating their son. The family would thus be increasing the scheduling of visits with him, while abandoning the meetings scheduled with Yale.

This time, Peter consented to Nancy’s wishes.

With how quickly these events unfolded, one curious fact seems to have gone unnoticed: that despite the supposed severity of the reaction that Nancy reported witnessing in her son, and her concern for his health, and her track record of over-protectiveness whenever she felt he was in danger, there is no indication that she ever contacted emergency services about these alleged side-effects, nor did she take her son to a hospital. She simply gave Adam what he wanted, and then the problem seemed to go away.

* * *

In March, after the Lanzas missed an already-scheduled session at Yale, Kathleen Koenig wrote to Dr. Fox, and officially threw in the towel. She said that everyone involved had agreed that it would be better for the Lanzas to “work with one provider,” and that the consensus was that Dr. Fox “would be the best person,” because Adam already knew him, and trusted him.

Reflecting on their interactions, and the 14-year-old boy that she would never see again, Koenig was still skeptical that Adam had an Autism Spectrum Disorder. Instead, she was more sure than ever that Nancy’s son was primarily debilitated by anxiety, and OCD. Both were common “co-morbid” disorders for Autistic and Asperger’s children — but with Adam, Koenig theorized, they were the problem itself. Not a symptom.

Yale’s psychological evaluation of Adam Lanza was never finished… but it had reached its conclusion. His file was closed, its “DRAFT” label still in-place, and the bundle of papers was filed away somewhere in the Child Study Center’s archives, never to be marked “FINAL.”