On Frontline's "Raising Adam Lanza"

I watched Tuesday Night's Frontline (Feb. 19, 2013) Newtown Special "Raising Adam Lanza".  It broke my heart and I will tell you why.  Adam is the 1 in 77 male births that will be diagnosed with Autism Spectrum Disorder.  Adam is the face of the children  I treated as a Pediatric Occupational Therapist for 14 years.  By the time I stopped working in Dec. of 2002, 85-90% of my pediatric population had a diagnosis of Autism Spectrum Disorder or autistic like behaviors.  I would  usually be the last in a string of health professionals that very exhausted and beleaguered parents would come to.  Every parent of this class of children that I worked with were Parental Heroes, if not downright Angels in my eyes.   By the time they got to me, they were confused, exhausted, in tears, and all they wanted to do was to help their child.  Many of these parents were blamed by "Medical Professionals" (mostly physicians) for their child's behavior, when the exact opposite was true.  These people had endured children who were non-speaking, didn't play, didn't intereact with people, ate weird things, demonstrated repetitive non-purposeful and often self-injurious behaviors.  Many of these kids can't stand to wear clothes and are escape artists, even learning to unlock key locks which were above head height at the age of 4 years.  I had at least two families that I had to write letters for because they would escape the house buck naked and the police would be called and the Dept. of Family Services would be called in on suspected abuse.  These children are often Sensory Defensive, which means that their nervous systems interpret normal input (light, clothing, food, sounds) as an attack and kicks in the fight, flight or fright response.  Fight or flight is clear, fright looks like complete withdrawal and often involves self-comforting repetitive behaviors such as rocking, hand flapping, screaming, repetitive sounds, head banging, even masturbation in order to try calm their nervous system (much as a baby sucks to calm itself or quiets to rocking).  This Sensory Defensive Disorder also means that painful input is often not correctly processed, and since they show no protective skills or safety awareness constant vigilance is necessary in ALL SITUATIONS.  Too much environmental input can result in "meltdowns" or "aggressive behaviors", again the Fight, Flight, or Fright Response.  Studies show that the Autistic Brain has 40% fewer of the structures which act as filters to the brain so that it is not bombarded by all the input that our sensory nerves are capable of sensing.  Imagine being able to see the molecules in the air between you and the face of your mother, the light beams, hear the fluorescent ballast on the lights, the ticking of clocks, feel the individual fibers of your clothes.  Is it any wonder they are Sensory Defensive and pull into their own little world?

It is very exhausting and lonely to  be a parent of such a child.  Very often, at least one parent of a child with Sensory Defensiveness also has Sensory Defensiveness.  In talking with many parents, as children one of them also had "Autistic Like Behaviors" (as described above), and may have even been in Special Education.  As you can imagine, life with a partner with these challenges (which often have NOT been identified or addressed) is very challenging, and when you add in a child with the ASD diagnosis, the marriage can often not withstand such pressures.  To a man, every parent I have worked with has searched endlessly for therapies, treatments and educational placements for their children.  Most school districts are struggling to deal with the onslaught of ADD and ADHD children which are the norm now, and are very challenged to deal with this still new inundation of children with Autism.  Participation in the educational system as a parent is a daily drain of being an advocate for your child, and waiting on tenterhooks for the "meltdown" calls, or notifications that the police have been called to deal with the physical behaviors (this was done in my school district with children as young as 6).  I feel for the educators, having an 8 year history in the Educational System, 4 yrs. as a Special Ed. Teacher, but I find the idea of police officers with a 6 yr. terriifying and ludicrous.

When watching Frontline, I saw in Nancy Lanza,  the parents of my patients.  Someone who knew things were not right with her son and was trying desperately to find her son the help and support that he needed.  Her constant searching for the right educational placement was a failure of the educational system, and was NOT her failure as was inferred by one of the educators interviewed.  It is necessary when working with these kids, that you DO allow occasional withdrawal back into their own worlds, because the REAL WORLD bombards them, and is a constant challenge and often unmanageable.  I viewed her use of firearms in target practice as an effort to involve Adam in behavior that is viewed as normal.  Parents here in Montana take their children hunting very young.  Guns and hunting are part of the culture.  In Newtown, CT as in much of rural America, hunting and guns are also the norm.  As a parent of a child with autism, the more normal the activity, the more optomistic you are that your child can have as close to a normal, functional, fulfilling life as is possible with such a challenging diagnosis.  And in this realm of normal teenage behavior, video games are also an accepted, and widespread activity, especially among males.  The majority that appeals to boys this age are violent, and I imagine that Adam was attracted to the immediate results and satisfaction of hitting a target, as he was in real life with target practice, AND AS IS THE INTENDED DESIGN OF THIS TYPE OF GAME.  Extensive research shows that there is NO link between violent target oriented video games and the player's own violent behavior.

Normal interactions with peers are very challenging.  People with Asperger's are very verbal and facile with words, are usually ultra-gifted in many areas, may even be what is known as "savant".  They often have a fascination with numbers and patterns, and visually repetitive input (some of my patients would rewind movies and watch only the credits over and over).  I do not know how Adam would have perceived his final task.  Empathy, and abstraction to feelings of others are great challenges for persons with Autism/Aspergers.  I am not excusing, but I am explaining, where this child and this mother came from, because I am too familiar with their history...up to the end.  I just want to say, in ending.  Autism is NOT a mental illness.  It is a Developmental Disability just like Down's Syndrome is, like Cerebral Palsy is, like any number of genetic/birth disorders that children can be born with.  With one in 88 births being a child with Autism, we as an educated society are going to have to deal with these children and their families, in our schools, our neighborhoods, our homes, even in our workplaces (there is actually a higher number of Autistic births in families who have inidividuals that are engineers).  Adam's last act is an aberrant behavior not associated with Autism.  By adulthood, most individuals have learned their limits for social interactions.  With the planning that went into this, I cannot even begin to understand what his expected purpose or outcome was.  I can tell you that I could probably decipher and understand the contents of his bedroom better than any Police Investigator can or anybody that does not have extensive contact and training in the treatment of Autistic Individuals.

There.  I have said my piece.  My heart goes out to ALL the children and families...the vicitims, the survivors, and the families of children with Autism who have had a very bright, and distorted light shone upon them.  

Peace, Kismet
 https://drive.google.com/open?id=0B70v0zNYtq1qTm5mekZYV1p1Y3c