Tolerating is not supporting

‎"Newcomer Thomas Horn... holding his own among the adult actors but, forced to behave with excessive shrillness much of the time.
That’s because his character may or may not have Asperger’s syndrome, a mild form of autism. You make allowances in life for people you encounter with autism, but spending two hours with a fictional character possessing autistic qualities can be grating." -AP Movie Writer David Germain You make allowances in life....do you really? If you are so disturbed by 2 hours of an actor who may or maybe not accurately portraying Asperger Syndrome, perhaps Sir, you are not making allowances. You are simply tolerating the few moments you have to be in the presence of someone of the spectrum and then forgetting about them as if they were a dead leaf you pulled out from under your shoe.

Perhaps I am over reacting, but I take offense to this writer's comments regarding the new Tom Hanks film Extremely Loud and Incredibly Close. The child in this movie supposedly has Asperger Sydrome which is an Autistic Spectrum disorder. People with AS are usually very intelligent, but lack basic social skills. Many times they speak in a robotic or pedantic tone. They also possess sensory issues often to light, loud sounds and touch. The reporter uses the word "shrill". So my child is shrill? I find that rather offensive since he is far less shrill than most children I meet that are not on the spectrum, but simply spoiled brats who are used to getting their own way. I am desperately tired of children with ASD being treated as if they can control their behavior and that we parents are at fault for the way they act in public.

I have spent the last 13 years advocating for my son who has Aspergers Syndrome. My family has faced many, many roadblocks in our quest to give our oldest child and sibling the life he deserves to live. Everyone of them are put up by people who are simply too ignorant or afraid to learn the truth. The truth, meaning that our son was not made this way by the way we raised him. If that was the case, then why are our other two children different than him? We suffered through people, even family members making comments that we forced him into these behaviors. The most ludicrous and ridiculous statements one can imagine, we heard. Instead of helping us make his and our lives better, criticism is all we got. The other side of that coin were those who were afraid to be in the same room as us. I am guessing that somewhere along the road, people learned that Autism and Aspergers was contagious if they were in contact with anyone possessing this disorder, even their family members. So they shunned us, in the name of making OUR lives easier, that things were too hard for us with the child we had to deal with. Instead of learning, they cut us off.

We have dusted ourselves off and continued on, stronger than others because knowledge is power and we are forever learning, We are now in the process of figuring out where my son will go to college. Yes, he is an honor student. He will graduate on time. He has scored incredibly high on his pre college boards. But yet, there are still people who stay away from him because he will occassionally flap his hands. He will get over excited and have to be reminded to slow down and not talk so much. Or he has to be coaxed out of his room and downstairs to greet company. He doesn't like loud noises or crowds. Guess what? Neither do I. Does that make ME someone to be avoided? Maybe. I don't care, I am who I am, and my son is who is he is. End of story.

We have spent way too many years trying to get OUR son who was born special to assimilate. To "fit in" to society. Now I step back and look at society. Why would we want to fit in to this? The rudeness, the ignorance? The lack of empathy for anyone who possesses one iota of difference? To tolerate uniqueness rather than celebrate it. What have we become? Greatness is not born out of walking around like lemurs, it is made from those who think outside the box.

I look at this new movie. One would think that I would celebrate yet more Aspergers becoming a part of life. I am not sure. Why is the diagnosis not made firm? The book was published in 2005. Aspergers was a firm diagnosis according to the AMA in 1994, the year before my son was born. We had difficulty getting the diagnosis, it was new, but not by 2005, and certainly not in 2011 when the film was made. It is now being handed out like candy to any autistic person who can speak. It is most often incorrectly and inappropriately diagnoses now to make parents happy. Not in our case, but in many other children these days. My other issue with this movie is, why do we have to have yet another 9/11 movie? We will never heal, but a child can have major issues losing a parent in any manner, it does not have to be in the 9/11 terrorist attacks to be awful. Okay, the book was written 5 years after the attacks, so I understand that. But why did it take so long to become a film? What is the purpose of this film? Is it 9/11 based or is it Asperger based? I am thinking, not AS based since the diagnosis is so on the fence.

Although I am offended by the AP reporters comments regarding listening to someone with AS for a mere 2 hours and being tired of it, I know that he speaks the truth. The majority of people out there who claim to be Autism supporters are simply people jumping on the bandwagon. They can support it if they just have to write a check or slap the puzzle piece on the back of their car. If they have to be near it, that is a different story. That is the truth. It isn't right, but it is what it is. The reality of loving someone with Autism and ASD is that we are alone in our quest. We stick together because we have to. Unless you live it, you don't understand nor do you truly want to. I get that.

2 hours is a drop in the bucket, Mr Germain, I invite you to come to any of my son's social skills or drama classes and listen. Listen to these teens talking excitedly to others who understand them. For the first time all day they get to just be themselves and not who the world expects and forces them to be. They smile, they laugh and they talk. Are they shrill? Maybe to you, but to us, their voices are music. They are a beautiful symphony that we are grateful to hear.