“Autism on the Rise”

Yesterday Autism was a buzz word again with news reports following the release of new statistics regarding the prevalence of autism in our society. The CDC (Center for Disease Control) released the statistic that autism now affects 1:68 children. Previous statistics indicate that the numbers were 1:88. This release, these numbers, caused autism to be a buzz word yet again. Not only for the NT community but also in our own autism community. But why? Here is a statement from the CDC’s website:

Prevalence

About 1 in 68 children has been identified with autism spectrum disorder (ASD) according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network. [Read article]
ASD is reported to occur in all racial, ethnic, and socioeconomic groups. [Read summary] [Read article]
ASD is almost 5 times more common among boys (1 in 42) than among girls (1 in 189). [Read article]
Studies in Asia, Europe, and North America have identified individuals with ASD with an average prevalence of about 1%. A study in South Korea reported a prevalence of 2.6%. [Data table] [Read article]
About 1 in 6 children in the United States had a developmental disability in 2006-2008, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism. [Read summary]  http://www.cdc.gov/ncbddd/autism/data.html

This blurp does not include the facts from the rest of the release. These numbers came from 2010 and include only 11 states. So why is this important you ask? Easy! The data is two years old. The states that the population was pooled from are limited. Seriously 11 states out of 50 in the US. This limited selection of individuals, mind you is counting only children above the age of 8, showed an increase of 29% in two years. The media is picking this up as autism being an epidemic. IT IS NOT AN EPIDEMIC! Autism is still widely misunderstood. The news stations picking this up are fueling a rise to find out why, a race to find a cause and cure. Let me tell you, we are not broken. We do not need to be fixed. 

I made a comment about the news report on ABC World news yesterday regarding a “Race to find out why autism is on the rise” and it lead to a friend asking “did they say why?” You see I don’t care why. Our house has rates of 3:5 with autism. My house is full of autistic people. I don’t care why it happened or what caused us to be autistic. I actually love our autistic life, even the struggles we have to go through to get to the great stuff. Instead of telling her that. I responded with:

there is no known cause at this point. Many believe there is a strong genetic component. The bigger concern is that there are very little services currently provided to our autistic children and adults. As parents we have to fight for every single thing in the school systems, more and more autistic kids are being placed in the general education (regular) classrooms with teachers who have NO knowledge on how to teach them. Media reports like this one and associations like Autism Speaks place more emphasis on finding the cause and/or cure and no focus or very little focus on helping families obtain services needed. The rates (which only included 8 yr olds from 11 select states in the US) indicate that we are going to have a generation of individuals entering the adult world and there are NO supports for them. The magical cut off for services seems to be 18 years old. I have two children who may never live outside of my home and may need my support all their life, who will take care of them when i no longer can? I’m not the only one in this boat. What will happen when those 1 in 68 children enter adulthood and their parents can no longer take care of them. This is why I was so outraged at focusing on finding a cause. We need to focus our efforts else where.

These new numbers will focus energy elsewhere. What we need to focus on is not the why’s or how’s, we need to focus on the services we are given. We need to focus on teachers knowing and being educated about the truths of autism. We need to understand that in a few short years we will have a group of people “age out” of the system and then what? Where are the supports for adults on the spectrum? We know what will happen after our children “age out” As parents and care givers we will be left high and dry with limited support. Should this be our reality? Shouldn’t we have a better chance at life? Autism is not something to be cured, rather the individual should be supported so that they can live the best life they can. 

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This is ours

“Lil Girl” they say as they call her back to the room.

I’ve been here before, I know how this goes

“Mom what concerns do you have?”

God I wish I could say none and why are we here

“She doesn’t speak much and when she does you really can’t understand her unless you are fluent in Lil Girl”

That’s right, hide your fears behind humor. You are so good at it.

“We are going to look at some key areas of development, language, and articulation”

“Lil girl how old are you?”

Please respond. Say anything, even if it isn’t your age. Please don’t sit there and smile at them

“Lil girl are you 1? ::shakes head yes and smiles:: “are you two?” ::shakes head yes and smiles:: “are you five?” ::shakes head yes and smiles::

YOU ARE THREE!!! DAMN IT WHY CAN’T YOU SAY YOU ARE THREE????

They keep making their notes, they keep trying to get something from her.

“Lil girl what is this?::  points to a picture of a spoon. “oo” “can you say spoon?” “oo”

“what is this?” ::picture of an umbrella:: “lella” “What do you do with the UMBRELLA?” ::flapping:: silence:: the question is repeated “ol tot site”  ::still flapping::

OH MY GOD!!! She just answered in a sentence. She spoke in a sentence. I’m shocked. 

“Mommy, we need her to see the developmental psychologist and have a more in depth evaluation on her language and speech”

DAMN IT!!! I wanted to be imagining all of this. I wanted to be seeing things that weren’t there. FUCK!

“We have some forms for you and the preschool to fill out.” They are talking, but I can’t hear the words. They don’t make sense anymore.

Seriously … again?!? I DON’T WANT THIS AGAIN. I CAN’T DO THIS AGAIN

The teacher forms aren’t much better. They were given back today.

“Lil girl doesn’t talk much. She doesn’t like to play with anyone and she gets upset if other children come to her”

Don’t cry mom, hold it together. You are stronger than this. Just keep reading

“She understands simple directions, like put it here, but most of the time when you ask her a question she just smiles”

Screw it! I can’t be strong any longer. I’m done, finished, I’m at my limit.  I let the tears roll down my face in silence. I cry because I was right all along. I know this is not the end, rather the beginning. I know that she follows in the footsteps of mommy and brother, and most likely daddy. I know that no matter what this challenging life throws at us, THIS JOURNEY IS OURS AND IT WILL NOT BREAK US!

Hi my name is …

March 18th marks my 31st year on this Earth. March 18th marks 31 years that I was lost and confused about myself and my life. There were so many unanswered questions, so many misrepresentations of who I was and am. 

Well, almost 31 years that is. March 18th now marks the First year that I have answers and understanding to why things are the way they are. 

What am I talking about you ask? It’s simple really, yet complicated. 

All through my life I felt I didn’t belong or fit in. I mean I could morph myself into a certain group or find ways to blend in and hide in the shadows. But really it was exhausting, and at some point I just gave up on it. When I was 17 years old I was diagnosed with Bipolar disorder, borderline personality disorder, social anxiety, and a few other disorders. They gave me a bunch of medications and I basically walked around like a zombi for the next 8 years. I couldn’t take it anymore. I felt like I was a shell of myself, who ever that was. 

I came off all the meds with the exception of my mood stabilizer for my bipolar disorder as it was the only one that seemed to help. I still couldn’t do social situations, I literally just shut down and couldn’t function. I hadn’t been able to hold a job, I had no friends, my relationships were unsuccessful and needy at best. 

In 2008 my lil man was born. In 2010 he was diagnosed with PDD-NOS, part of the autism spectrum. It was at that time things started making sense to me. After following the words of two other Autism Mamas, Erin (Mutha Lovin’ Autism) and Karen (More than just a diagnosis – our journey), I took my suspicions to my doctor. After that appointment I walked out of his office with a better understanding of myself.

Hi, my name is Erin and I’m an aspie. But I am also a mom, a friend, and a teacher. The diagnosis didn’t change me or really anything else other than explain why the medications didn’t work and why things have always been the way they are. The truth is I am just me and a diagnosis didn’t change that.