Why Autism Awareness is broken

After reading this post on "Autism Today" by Lost and Tired, I felt obligated to share this with my readers. I am certainly guilty of "sugar-coating" how things were with Nathan before and around the time he was diagnosed and that really doesn't help anyone understand what us parents go through!

                                                                                           Lorrie

Problem’s with Autism Awareness

I have been wanting to write this for a while but honestly it seemed to exhausting to do. This has been eating away at me and I need to just get this off my chest and move on. I’m not sure how this will turn out but I want to make a few things very clear as to avoid any misinterpretation. Everyone’s problems are relative and I get that.

I am by NO MEANS trying to belittle anyones personal experience with Autism and its impact in their lives. Now with that said, there are some things I need to say.

Autism and my family

I’m the father of 3 Autistic boys. My boys are each in different places on the spectrum (ranging from low functioning to high functioning) so I have very unique experience and perspective that most don’t have.


Gavin and Elliott are our Aspergers kids. Gavin is “functioning” but not “high functioning”. He also has a host of other mental health issues, most notably schizoeffective disorder. Elliott is our middle child and is “very high functioning”. Most people unfamiliar with what Aspergers actually is, would not know that Elliott has any problems but he does. His issues mostly revolve around anxiety. Gavin will most likely never be able to function independently without supervision. Elliott should be quiet successful in life, as he is more enhanced by Autism then hampered.

Emmett is our youngest and he is Autistic. He is “low functioning” and significantly developmentally delayed. He is pre-verbal meaning he does have a few words but little to no language skills. He was believed to be non-verbal but has picked up a few words so pre-verbal is more accurate. He is violent and aggressive but sweet and beautiful. Emmett is EASILY the MOST DIFFICULT challenge I have ever faced….

My wife and I have been walking this journey for 10 years together so far. I have become an expert (as much as possible) on my children’s disorders….and yes they are disorders. So I do have some knowledge and experience in this area.

Autism Awareness in it’s current form

There has been a lot of debate over whether or not Autism Awareness is effective. I would argue that currently it’s not effective but not for the reasons people think. Many people will say that society just doesn’t care. While that may be PARTIALLY true I don’t think that’s the problem.. There is a fracture within the Autism community itself.

We have parent’s with Aspergers kids (like myself) saying things like “Autism does not define my child”. Then we have parents of much lower functioning kids (again like myself) that don’t say much at all because we are just to exhausted, beaten down and demoralized.

Now, I’m going to say this knowing full well how it’s going to sound but I think it NEEDS to be discussed.
Raising a child with Aspergers (again which I’m personally doing) while not without it’s challenges, it’s even remotely similar to raising a truly non/pre-verbal Autistic child. You have to understand that there is a huge difference.

Again, I can say this as I am personally doing both. I have NO experience in raising a truly non-verbal Autistic child and I can’t even imagine how difficult that is.

This is the problem in my opinion. All we really ever hear are the “fluff” pieces about Aspergers from parents and large organizations. Honestly, they aren’t wrong because many of these kids will grow up to be successful or at least independent and God bless them for that. However, the problem is these examples become the public image for Autism and these parents its voice. It just doesn’t portray Autism in an accurate light and it sends the a less then accurate message.

Truly low functioning Autistic kids and their parents don’t share the same positive experiences or hope for the future. From personal experience I can tell you how demoralizing it is for me to hear people say things like “Autism doesn’t define who my child is” or something similar. The truth is, that maybe for them it doesn’t but walk a mile in my shoes (or anyone else who’s dealing with low functioning Autism) and you’ll likely walk away singing a different tune.

I mean no disrespect by this at all. I just see things from both sides. For my part, I assumed that the experience I gained raising Gavin and Elliott would prepare me for Emmett but I couldn’t have been more wrong… I could not believe how infinitely more difficult it was with Emmett and that’s after 9 years of raising Gavin, who breaks the mold in just about all areas. Honestly, it’s a night and day difference.

How can we expect Autism Awareness?

How can we as members of the Autism community ever expect the world to understand when we can’t even be on the same page ourselves. We preach to the world that every Autistic child is different and that’s very true. However, these words become empty if we fail to apply them within our own Autism community. As parents we make the mistake of generalizing things much the same way our kids do.

We generalize our experience with Autism and its impact on the family and transpose that across the board. In other words, we assume that other peoples experience mirrors that of our own. That’s a very dangerous and damaging assumption……. If we are making that mistake how can we expect the rest of the world to be any different?

The follow up to Why Autism Awareness is broken can be found here: How we can fix Autism Awareness

- Lost and Tired

What is Autism?

I have asked our Featured Guest Blogger, Rob Gorski of Lost and Tired @Lost_and_Tired, for permission to post this article because the Oklahoma Walk Now For Autism Speaks in my area is on Saturday, September 17, 2011 @ the East Wharf of Lake Hefner in Oklahoma City. The following post has been taken in whole, as it has been posted on his blog.

                                                                                            Lorrie                                                                                                                          
                                                                                          
What is Autism?

This is directly from Autism Speaks (The original link can be found here)



What is Autism?

Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified), Asperger’s Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders.

How common is Autism?

Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Government statistics suggest the prevalence rate of autism is increasing 10-17 percent annually. There is not established explanation for this increase, although improved diagnosis and environmental influences are two reasons often considered. Studies suggest boys are more likely than girls to develop autism and receive the diagnosis three to four times more frequently. Current estimates are that in the United States alone, one out of 70 boys is diagnosed with autism.

What causes Autism?

The simple answer is we don’t know. The vast majority of cases of autism are idiopathic, which means the cause is unknown.

The more complex answer is that just as there are different levels of severity and combinations of symptoms in autism, there are probably multiple causes. The best scientific evidence available to us today points toward a potential for various combinations of factors causing autism – multiple genetic components that may cause autism on their own or possibly when combined with exposure to as yet undetermined environmental factors. Timing of exposure during the child’s development (before, during or after birth) may also play a role in the development or final presentation of the disorder.

A small number of cases can be linked to genetic disorders such as Fragile X, Tuberous Sclerosis, and Angelman’s Syndrome, as well as exposure to environmental agents such as infectious ones (maternal rubella or cytomegalovirus) or chemical ones (thalidomide or valproate) during pregnancy.

There is a growing interest among researchers about the role of the functions and regulation of the immune system in autism – both within the body and the brain. Piecemeal evidence over the past 30 years suggests that autism may involve inflammation in the central nervous system. There is also emerging evidence from animal studies that illustrates how the immune system can influence behaviors related to autism. Autism Speaks is working to extend awareness and investigation of potential immunological issues to researchers outside the field of autism as well as those within the autism research community.

While the definitive cause (or causes) of autism is not yet clear, it is clear that it is not caused by bad parenting. Dr. Leo Kanner, the psychiatrist who first described autism as a unique condition in 1943, believed that it was caused by cold, unloving mothers. Bruno Bettelheim, a renowned professor of child development perpetuated this misinterpretation of autism. Their promotion of the idea that unloving mothers caused their children’s autism created a generation of parents who carried the tremendous burden of guilt for their children’s disability.

In the 1960s and 70s, Dr. Bernard Rimland, the father of a son with autism, who later founded the Autism Society of America and the Autism Research Institute, helped the medical community understand that autism is not caused by cold parents but rather is a biological disorder.

posted by Lost and Tired

My Broken Heart

I have the distinct honor of introducing our 1st Guest Blogger, Rob Gorski of Lost and Tired, in an effort to raise autism awareness and, of course, give everyone something else to read besides what I write! The following is taken in full context, as not to leave anything out.
                                                                                                      
                                                                                            Lorrie
                                                                                            Nathan's Voice

To my readers:
The story in the below post happened to me on February 22, 2011. This event has forever changed my life. Please help me share it. This is why we desperately need Autism Awareness. Thank you for reading and helping me share my story…
-LT


It’s been a few days since I have spoken with all of you. Something happened to me a few days ago that I have been struggling to deal with it. I hope you all truly hear what I’m about to share with you. I want everyone to read this and know what happened. Not because of what I did but because of what I learned… Please share this story and help spread awareness.

A few days ago I went to Giant Eagle to pick up some groceries. We had a winter storm on the way and I needed to pick up a few things in case we got snowed in again. I pulled into the parking lot and found a spot right in front of the entrance. My back is out again so I can’t walk very far. As I was pulling into the spot I had to wait for some people to move out the way. They were just standing in the parking spot. Their car was in the next spot over but they just stood there and shot me a few dirty looks, like “who was I to expect them to move”. I just waited, it wasn’t a big deal. I wasn’t even upset. They eventually started to get into their car and moved out of the way so I could pull in.

The snow had already started to fall and we were getting about 1″ per hour. I sat there a second collecting what I needed to take into the store. I just happened to look over at the people that were still getting into their car and I saw a large black man standing there. I didn’t see where he came from but in one minute he wasn’t there and the next minute he was. Then I realized what he was doing. He was wiping the snow and ice off their windshield with his bare hands. The woman looked at him, like, “how dare you touch my car”.

She was clearly disgusted just breathing the same air. Instead of asking him to stop or giving him a few dollars she tried to run him down. She gunned the car forward so fast that her friend who was trying to get into the back seat had the back passenger door slammed on him and he was left standing in the snow. The man who had been trying to clean the windshield was knocked back. This woman just kept shouting things to the man with the bare hands.

Hands_by_rE_Fuuused

I was in shock. I had never seen anything like that before and I never want to again. A few seconds later the man gets up and walks over to me and knocks on my window. I hadn’t even begun to process what I had just seen. Now he was coming over to me and I had no idea what I was going to say. Shamefully, I was thinking “please not now, I just want to get what I need and get home”. Where I live it’s not uncommon for people to approach you for money. So I knew what was probably about to happen. I took a deep breath and started to open the door. The bare handed man opened it the rest of the way, being careful not to hit the car next to me.

The bare handed man was under dressed for the weather and obviously cold. He asked me for change. I gave him everything I had, $2.37. He started talking to me but couldn’t look me in the eye. As he was telling me how cold and hungry he was, I watched as he was unable to control his hands. It was like he was playing an invisible piano. He had a very hard time talking to me and I could see he was much more uncomfortable then I was. He clearly had boundary issues but I never felt threatened in any way. He kept staring off and would occasionally look in my direction but never at me and I never saw his eyes. He stood about 1 or 2 feet in front of me and asked me to drive him to a shelter because it’s “warm there and they have food”. He informed me that he was “homeless and very hungry”. He then told me that he “was not lying to me”. He said “if I lie to you then you might not help me”. He asked me to buy him some food and gloves. I thought about what to say. I knew he would have hard time understanding. I don’t have any money. My family is struggling to survive each day. I would literally be taking away from what little my family has and I just couldn’t. I was trying to figure out how to explain to him that I couldn’t help him. I was lost for words.

Then something happened that shook me to the core and completely broke my heart. As I was trying to form the words I needed to tell him “no”, he looked me in the eyes. All of the sudden I was looking at Gavin. Gavin is the oldest of our three special needs boys (all Autistic). Gavin is 11 years old and is also diagnosed with schizoaffective disorder as well. Looking at the bare handed man was looking through some special window at my son Gavin, 20 or 30 years from now. It was a kick in gut. I was overcome with emotion. It was like I was run over by a freight train. I can’t put words together to really describe what that moment was like.

He again asked me to buy him food because he was hungry and gloves because his hands were cold. Something about him was so familiar and yet I’d never met him before. I looked at him and told him I would buy him some food. He smiled in my direction and took my hand (without looking at me) and led me into the store. He didn’t fit in with the rest of the people in there. His clothes were old, beat up and didn’t smell very good. He had clearly been through a great deal in his life and it showed in his face. I noticed the looks people gave me as I walked with the bare handed man into the grocery store. He asked me to buy him a gift card so he could buy food later on when he is hungry again. So we walked over to the rack and he picked out a Giant Eagle gift card. He asked for other ones but I just couldn’t. We went to the register to ring it up and I explained how to use it. I put $25 on the gift card and the cashier asked if I wanted any cash back. I had them give me $25 cash back. I gave it to the bare handed man and asked him to please buy himself some gloves and a bus ride to the shelter. The last thing he asked was to have the receipt so “when the police stop me, I can prove I didn’t steal this”.

He told me again that he wasn’t lying. I told him I knew he wasn’t. He turned to walk away and he stopped and looked in my direction as to say “Thank You” but didn’t. What he did said more than a simple thank you. He showed me his eyes again for a brief moment before he turned around and left. I stood there completely heartbroken as I watched my son Gavin walking away into the cold. I was beside myself with grief. How could someone I didn’t know have such a profound effect on me?

I just couldn’t shake just how much the bare handed man reminded me of Gavin. I tried to finish the shopping I had to do but I couldn’t remember anything I was supposed to get. I walked up and down the aisles on “autopilot” doing everything I could not to burst into tears. I got to the end of the store and realized I still had an empty cart. All I could think was “how does that happen”. I was smacked in the face with reality. Someday I won’t be here to take care of my kids. What if this happens to them? What if they are the ones wiping off a windshield with their bare hands and almost getting run over by someone who clearly doesn’t care.

I screwed up grocery shopping. I just couldn’t focus on anything. I got what I could remember with what little I had left and drove home. I was completely lost at that point. I just couldn’t process what had just happened. All I could think about was not allowing this to happen to my kids in the future. The horrifying truth is that someday I won’t be here for my kids and I pray they are never in that same situation. I truly hope that if they are, someone will show them kindness and compassion. These are my babies and I get sick to my stomach thinking about what their future holds.

I got home and unloaded the groceries and was in the kitchen with Lizze. I wasn’t going to say anything to her about it but I had to because we already were struggling and now things were going to be even tighter and she deserved to know why. I looked her in the eyes and told her what had happened. I just sobbed and sobbed on the floor in my kitchen. I couldn’t control myself or keep my emotions in check. That has only ever happened to me when I watched Lizze give birth to our kids. The past few days have been rough because I just can’t seem to get past this. All I can think about is my kids and their future. My heart has been broken and I live with the reality that this could be one or more of my kids in the future.

This has been very difficult for me to write. I’m still very emotional. Most parents will never know this fear but I do. Parents of special needs kids live with this indescribable fear each and every day. I wanted to share this story because we CANNOT allow this to happen to our kids. Please help me spread Autism Awareness. I don’t care what it takes but the world needs to be better. These people NEED compassion and understanding. My kids need your compassion and understanding… Please give them that much, I beg you….




- Lost and Tired
February 24, 2011