Monday, April 4, 2011

Autism Awareness

Autism Ribbon
As many of you have probably already learned, April is Autism Awareness Month. I don't blog a lot about autism specifically. Autism is considered a spectrum disorder because there are a wide range of signs and severity that contribute to an autism diagnosis. Basically, it means different things for different people. It can even mean different things for one person at different times in their life.
We are very new in the "autism world." I wasn't totally surprised by Max's diagnosis, and had suspected it for some time. But even as a pediatric nurse, and someone who has been around kids my whole life, I was surprised at how little I actually knew about autism. I have been taken aback at how much of what we see in Max as quirky personality traits, are considered autism signs. I think that as parents, we need to be taught, over and over again, the signs of autism. Early intervention is crucial to the success of treatment. Unfortunately many children are not diagnosed until well into their elementary school years. As one specialist explained to me, "a young brain is very plastic. Bad habits are not very old and ingrained. It is much easier to teach and 'train' a child while they are young." Similar to the idea of "teaching an old dog new tricks"...
We got blind-sided by Ellie's death within two weeks of Max's educational diagnosis and therefore, I haven't done the research that I feel I need to. My goal in the next coming weeks is to take that time (where I'll find it- I have NO idea...) to look into some more alternative treatments that Max could benefit from. In our house, grief and autism constantly fight for attention. I know autism will always be a part of our lives. A big part. But I refuse to let autism BE our lives. We will work to deal with it and I think these early years will be the hardest. But autism will NOT define Max.
However, as Max's mom, I feel like it's my duty to increase awareness of autism. The more people know about autism, the less scary it is. The more people know about autism, the more they understand. The more people know about autism, the more empathetic they can be towards those affected.
So during the month of April, I will be posting some information about Autism in hopes of increasing awareness and in hopes that it may help at least one family recognize some early signs in their child.

*** I have no intention of turning this into any sort of debate about anything autism related. My opinions are my opinions. My situation with my child is my situation. Not everything applies to every child. It drives me crazy that you can't mention autism without everyone (most of who have no idea what they are talking about) throwing their opinion out there. This is meant to educate, raise awareness and allow me to find some reliable resources.

The following information is from the Autism Speaks website:

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


It is surprising that as common as autism is, there isn't a higher awareness of it, especially among parents with young children.

Remembering April 4th, 2010

This day last year was Easter. Last night as I was laying in bed, I was thinking about the major holidays we got with Ellie. We only got Easter and the 4th of July. This year Easter will be on April 24th. Exactly 6 months after the day she got sick. I don't understand how we went from having a perfectly healthy baby girl last year, to a six month Angelversary this year. It makes me sick.

A very sick Max pretending that he gives a crap what's in the bucket...

Happy Easter Little Peanut!

After a little Motrin, he found some eggs on the porch from the Easter Bunny!

In my defense- I looked ALL over for a non-winter hat for Ellie. This was all I could find.
Thankfully, I found more acceptable ones later on!


TanaLee Davis said...

Cute photo's of the kids. Thought I'd mention that the first few paragraphs I was unable to read fully due to a color stripe going through many of the words ect. Also the autism ribbon photo covers some of your words. I tried to refresh the page but at no good outcome...maybe re-post it? Anyone see what I'm seeing?

Tiffany said...

Hey Felicia~ Thanks for the heads up- I'm not sure what was going on... I got it fixed.

Tabatha said...

Thanks for sharing the information!!! I went into TJ Max the other day and they were doing a donation drive for autism awareness month.. I immediately thought of you and sweet Max.. :) As always I loveee the photos!! That last one of Ellie is just a classic!! xxoo Kudos to you for spreading awareness while educating yourself at the same time! ((HUGS))

New Year Mum said...

Thank you too for sharing this information... there has been a bit on our news over recent days and there needs to be so much more awareness, understanding, support and research for those with Autism and their families. Love to you and your family xoxo

Chelle406 said...

Thanks for sharing this information. I have to say I really don't know that much about autism and I find it so interesting that it is something that effects so many children yet it is basically not talked about. It just amazes me. Love the pictures. Thinking and praying for your family.

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