“Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.”
A.A. Milne

Sunday, December 16, 2012

Let's talk about Autism . It is NOT a Mental Illness. A must read for everyone!!

By now, everyone who has a television, radio, computer, or mouth knows about the tragedy at Sandy Hook Elementary School in Connecticut.  There is no argument about the senseless killings of small children and their teachers.  What there is an argument about is of course the same one that has been circulating and dividing for years:  Gun control.

I don't want to talk about gun control.  We all have opinions about it--for or against.  However, the conversation that should be taking place is that of mental illness and mental health services--not only for the person suffering from the disease but from the family members who often suffer in silence. 

When my son, Caleb, was first diagnosed with Autism, most of the books out there dealing with the disorder still referred to autism as childhood schizophenia.  Basically, a child with autism was considered mentally ill and the mother was to blame.  It was because she was cold and indifferent. (sarcasm here).

The following is taken from Web MD and a brief history on the "origins" of Autism.

"Where Did the Term "Autism" Come From?

The word "autism," which has been in use for about 100 years, comes from the Greek word "autos," meaning "self." The term describes conditions in which a person is removed from social interaction -- hence, an isolated self.
Eugen Bleuler, a Swiss psychiatrist, was the first person to use the term. He started using it around 1911 to refer to one group of symptoms of schizophrenia.
In the 1940s, researchers in the United States began to use the term "autism" to describe children with emotional or social problems. Leo Kanner, a doctor from Johns Hopkins University, used it to describe the withdrawn behavior of several children he studied. At about the same time, Hans Asperger, a scientist in Germany, identified a similar condition that’s now called Asperger’s syndrome.
Autism and schizophrenia remained linked in many researchers’ minds until the 1960s. It was only then that medical professionals began to have a separate understanding of autism in children.
From the 1960s through the 1970s, research into treatments for autism focused on medications such as LSD, electric shock, and behavioral change techniques. The latter relied on pain and punishment.
During the 1980s and 1990s, the role of behavioral therapy and the use of highly controlled learning environments emerged as the primary treatments for many forms of autism and related conditions. Currently, the cornerstone of autism therapy is behavioral therapy. Other treatments are added as needed.

What Are the Symptoms of Autism?

One symptom common to all types of autism is an inability to easily communicate and interact with others. In fact, some people with autism are unable to communicate at all. Others may have difficulty interpreting body language or holding a conversation.
Other symptoms linked to autism may include unusual behaviors in any of these areas:
  • Interest in objects or specialized information
  • Reactions to sensations
These symptoms are usually seen early in development. Most children with severe autism are diagnosed by age 3. Some children with milder forms of autism, such as Asperger's syndrome, may not be diagnosed until later, when their problems with social interaction cause difficulties at school."

Ok, so that's a brief synopsis of autism.  But that little blurp or the other blurps you read about the disorder are not going to tell you about living with the disorder each and every day. They are not going to tell you the hell that most families experience not once, not twice , but on a daily basis for months and often years on end.  As I continue Caleb's story in subsequent blogs, I'll relate some of the hell we went through.  But for today I want to focus on the obsessiveness of the disorder.

First of all, before I go on, I want everyone to understand, autism is NOT mental illness.  It is a disorder.  It is not schizophrenia.  It is a neurological disorder that no one has found a cure for (regardless of what some say).

Second, the one thing you can count on with autism is that you cannot count on autism and it's symptoms and behaviors being the same in every person that has the disorder.  One may be verbal; another may not be.  One may be highly intelligent, and another may have mental retardation.  One may be basically happy while another may be basically despondent and sad.  EVERY SINGLE PERSON WITH AUTISM HAS DIFFERENT SYMPTOMS AND DIFFERENT REACTIONS.  Therefore, it is difficult to treat autism.

Third, one thing you CAN count on with autism is that ritualistic behaviors and obsessions are unilaterally present.  Over my son's 23 years I have not met one person with autism who did not have certain obsessive behaviors and rituals that were performed and perseverated upon.  

We are fortunate.  Our son is obsessed with all things Disney.  In particular, he is obsessed with Winnie the Pooh.  Winnie the Pooh is gentle and kind and not violent--ever.  Some people with autism are obsessed with purses, or trains, church, or whatever.  However, some are obsessed with superheroes, and yes some are obsessed with video games--violent video games.  And this can be a problem.

You must understand Autism to understand why this is important.  As described above, persons with autism are interested in objects.  Well, it goes further than that.  They tend to TREAT people like objects.  They completely lack empathy.  They aren't being rude or insensitive.  It is just not in their nature to have empathy for people--at all--ever.

Now challenge their obsession; take it away; destroy it; then you might get some emotion.  But for people-no.  Here's an example:

Several years ago, our dog, Sunny, was killed in a car accident.  Caleb loved that dog.  That dog slept on his bed.  But when Sunny was killed, Caleb laughed and hooted about it for days.  We would tell him it was sad and for a time he would put on a frown but then he would go back to laughing about Sunny's death.  And to this day, three years later, Caleb will still laugh about how Sunny's head was squished by a car.When my father in law died, Caleb laughed about that. When he visited my mother in the nursing home and saw her crying in pain (she is dying from cancer), he laughed.  It's inappropriate--yes--to us.  But to him who lacks empathy and understanding of empathy, it is perfectly normal.

Caleb does cry.  If you take away his dvd's or his toys or restrict him from the television, he will have big old tears pouring down his face.  Challenge his "world" and he is terribly unhappy. Those who know Caleb love him.  Most people would describe Caleb as gentle and kind.  And he is.  But he is still autistic and he will never act in a way we think he should.  People are objects --plain and simple.

For better understanding of autism, read Temple Grandin's book "Thinking in Pictures: My life with Autism".  She is a person who has autism and can artfully explain it. 

Now why did I just write about all of this?  Because the media is reporting that Adam Lanza, the shooter at Sandy Hook Elementary School, suffered from Asperger's.  If that is true, then he would have seen people as objects.  I don't know (and we may never know) what caused him to pick up a gun and decide to kill 20 children and 6 adults that day but I do know if he was a player of video games, if he was obsessed with them, the games would have been real to him.  It is conceivable on every level of autism that he would carry out what he was watching on his games-because the people would only be objects to him and the games would be real.  This does not mean that all people with autism are going to pick up a gun and harm others.  I am not saying that at all and I do not want anyone out there to be afraid of people with Autism.  That would be stupid and a step back for our society.  I am merely trying to offer an explanation from an autistic point of view.

It will be interesting to see in days to come, if Adam Lanza's mother had reached out for help and was turned away.  Services for children and adults with autism are STILL spotty at best.  Unlike other disabilities, adults with autism have difficulty interacting with others, maintaining employment, and developing any meaningful friendships.  Many agencies are less than thrilled to offer services to adults with autism--especially those who display violent tendencies.

My husband and I are fortunate.  Even though we live in a small town, services over the years have been good.  Caleb has had wonderful, caring teachers through the years who made sure that he was integrated well with peers his own age.  We are also fortunate that for the most part, Caleb is happy and easy going.  He does still have rituals and behaviors that he must perform (like wearing pink on Sunday's--he has six of the same pink shirts) but most of his behaviors are harmless and only annoying to us, his family.  Other families are not so fortunate.  Many children with autism become unhappy adults with autism.  Hormones tend to play havoc with their moods and behaviors.  Their families often find them difficult to deal with and also find no where and no one to help them. 

Although the natural tendency is for society to judge Adam Lanza and his mother harshly and call them monsters, please be careful in your judgements.  What happened was wrong and a tragedy.  However, you do not know the hell that either Adam or his mother were suffering from.  You do not know if they reached out for help only to be turned away again. Remember, they too lost their lives and only by the Grace of God go we.

Disclaimer:  I WILL delete any and all posts that are rude, ignorant, or basically not helpful so please before you comment on this blog, think about that.  This blog was intended to uplift not harm.  Thanks!


  1. Lori- you and Larry do "live life daily" with Caleb! Hopefully with this blog eyes and hearts will be opened to the unknowns of Autism! Sending yu a BIG hug Caleb!

  2. Thank you for a straightforward explanation of Autism from someone who has lived with an autistic person.

    And you say that Caleb's behaviors might be annoying or bothersome to people, but you know, he sounds like a sweet boy.

  3. From: Jen Willkie
    Thanks for writing this Lori. I want to hold off on saying too much about Adam Lanza until the media gets its story straight. I've read that this young man had Asperger's, that he had a personality disorder, that he was deeply troubled. (Someone needed to write that last one? I'm think we could all figure that out ourselves.) I'm pretty sure that the general public doesn't understand the difference between a neurological disorder and a psychiatric one. In layman's terms, it means that there is something structurally wrong in the way the brain operates rather than something chemically wrong in the way the brain operates. What it means for me as the parent of a violent autistic person is that there isn't a safe place to put him when he goes off the deep end. Psychiatric hospitals are the only real institutions left, and as Autism is not a psychiatric disorder...they don't want to take him even when he is clearly a danger to both himself and others.
    Regardless of what was wrong with Adam Lanza, I wish people would get off his Mom. What do we know about her? We know she went to arbitration with the school district because he wasn't getting the help he needed. We know she quit her job to stay home and try to care for her son. That sounds like a pretty devoted Mother. We know that there were semi-automatic weapons in the house, but who bought them and how they were purchased remains unclear. I've read multiple conflicting accounts. We know he shot her in the face on the morning of his homicidal rampage. It's possible that he shot her because she attempted to stop him.

    I'm thankful for your pointing out that not all Autistic people become violent. Caleb is certainly a gentle giant, isn't he? The issue of violence can't just be boiled down to what was wrong with an individual, it also encompasses the societal influences in which that person lived.

    1. Thank you Jen. I appreciate your take on this tragedy. Only those of us with autistic children can know the pain of having a child who may have been autistic involved in such a tragedy. I agree that tons of judgement has been thrown out there about the mother. That was exactly my point. We cannot judge because we do not know. And as you well know, sometimes no matter what we do as a parent, a child with autism will behave in a manner we do not want.

      Yes, mostly Caleb is gentle and yet he even has temper tantrums and has broken things and punched holes in the wall. It does not happen often but when he gets really angry it can difficult to call him back to this earth. Like I wrote, when his obsession is challenged (or he doesn't get his own way) he will become angry. Usually he just yells but sometimes he does break things. You see, people just don't understand.What parents really need is HELP!!! not gun control. Help.

  4. I landed on your page through a pinterest link and I found so much more here than I ever expected. Your story above really helps me understand autism, which is something I never really new much about. I have never had to deal with anyone with autism, and stories from "professionals" do not do justice to what you deal with on a daily basis. I have a new respect for parents of children with autism and Aspergers. I never knew that they lacked the ability to see a person or an animal with any emotion, and that they just see them as objects. Thank you so much for this insightful story, and may God Bless you and your family.

  5. And may God bless you!! Hope you enjoyed the blog!!

  6. Jane, you have given probably the best and most comprehensive explanation of the hows and whys Adam Lanza may have killed. I read a couple days back that his mom was planning on sending him to a behavioral institution and that's why he acted out. We'll never know for sure. I just wish his mom would have reached out for help sooner.

    I'm the stepmother of an adult with autism; aunt of a teen with autism. My other 2 step children and my husband are on the spectrum but not officially diagnosed. My StepDaughter with autism started having behavioral problems at 15, mom refused to address them until she was 21 and banned from our house after she tried to choke me in church. Her thumbs were well placed to choke me had I not been able to get away. I'm still afraid of her 6 years later. My nephew is at his second behavioral institution this year after having some issues...this unit specializes in children with autism and we have great hopes for success. I saw pics of him yesterday when the family went to visit and he was smiling...the first picture I've seen of him smiling in a couple years.

    Thank you for your well written post. I hope that other parents of children with autism will get behavior intervention for their children when they need it. It would make such a difference.

    1. Melissa, you definitely have your hands full. Hope everyone receives the help that is needed. Keep asking until....

  7. As a current education student focusing on a degree in Early Childhood/Special Education I am constantly learning and reading of various disorders. Autism and Aspergers is so facinating to me. We know, yet we still don't. Some people see these tantrums, and the violent (and sometimes not violent) reactions these kids and adults have and sometimes wonder what is wrong with them. I see it and wonder what are you trying to tell me? Think about this one for a moment; how many times have you wanted to say something or use a specific word and it is on the tip of your tongue and you just can't get it out. Do you remember the frustrations that built up inside of you? Imagine having opinions and wanting to voice concerns, ideas, and thoughts continuously and never being able to. Not because you are unintellegent, but simply because you don't have the natural ability. That is one of the complications that comes with this disorder. I would probably act out, throw things, and break items if I was constantly dealing with this type of frustration. And for those that are non-verbal autistic, it is an even a more difficult place, which very well could be why they live in their own world. They are the only ones that understand them at all times. My goal is to hopefully reach each one of my future students in a way that will help move them forward instead of holding them back. Great post, thank you so much for sharing

    Jessica Johnson

    1. Nicely put, Jessica. You are going to do well in the field!! The students will be lucky to have you.

  8. Thanks for posting this. My son was diagnosed with high functioning autism and it is a battle everyday! It is just nice to know I am not alone and that the love we have for these kids is enough to keep us going.

  9. My son was also diagnosed with autism . My son is now 23 years old holds a job he drives he lives in his own apartment he also just got his first personal loan . I'm very proud of him