Welcome to Autism Awareness Month

Just in case those who come upon this little blog are not aware, my family has been directly affected by Autism.  April is officially Autism Awareness month.  I don't know if this is strictly a Facebook thing, but there is a movement to have people wear blue tomorrow to support, and help get out the word for, Autism Awareness Month.

From Autism Speaks:
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. 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, 1 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.
What many people do not seem to understand about those with Autism, especially those with Aspergers (because they are so high functioning) is that people look at them, and their parents, as if the person is merely just misbehaving.  That they are choosing to be undisciplined, disruptive, inconsiderate.  If i could share one thing with people who want to know what they can do to help... have some understanding and compassion - especially for the parents.  The Autistic child is aware that they are different, but the don't understand why everyone doesn't understand them.  If you can - offer to give the parents, especially a stay-at-home parent, a couple hours out.  Even if it is to just go to the grocery store alone.  Also, please remember, boys are not the only ones who can have Autism.

Here are some websites that are out there:
Autism Society ~ Is a site to help within the community, to help support both those with Autism, and their caregivers.

Autism Speaks ~ is a very good website that seeks to help raise awareness and provide ways to help support research.

Autism Research Institute ~  This site is pretty well rounded.  It speaks to those who are trying to learn, those who are affected by someone with Autism, and has some pretty good medical references as well.

Wrong Planet ~ Primarily an "Aspie" community, run by someone with Aspergers. This site helps provide good links and a community for those with Aspergers to share and learn with each other.

Light it Up Blue ~ this is a part of Autism Speaks, and is apparently the backer and promoter of the Wear Blue campaign i mentioned above.

Dr. Temple Grandin ~ This is an excellent website about perhaps the most transparent person with Aspergers today.  I saw an HBO special movie about her - simply awesome, and i am very anxious to see this be released on DVD!  She has written several books (see below) that really help explain from a person with Asperger's point of view, just what is going on in their minds.

Here are some books that both my Beloved and i would recommend:
All Cats Have Asperger Syndrome by Kathy Hoopmann ~ A very easy to understand children's book that has been really helpful in explaining things, especially to the siblings of those with Autism in general, and Asperger's in particular.

Look Me in the Eye by John Elder Robison ~ Written by a man who grew up with a very interesting sense of humor.

Thinking in Pictures by Dr. Temple Grandin ~ I've not read this book, but my Beloved has been engrossed for several days now.  She is asking me to pick it up when she's is done as well.

While i have never been officially diagnosed with Aspergers i have come to accept that i probably do.  My Beloved, who is my hero when it comes to being a champion for our children and doing the hard things to learn and support (i will have to expound on that at some future point), and a few others who work a lot with Aspies, have commented.  To be honest i resisted being "labeled", but i am what i am, and this is the way God made me - and i have come to realize that i like me.  And i don't really care what other people think.  I have learned so much from DS2.  I have also found that i've been able to work with him, and help him cope with things in life.  I pray i am doing a better job than i think i am. 

I wanted to have so much more time, there is a lot more i wanted to link to, and share on this subject.  Please take some time this month to learn about what Autism is - not just Aspergers.  Maybe find some time to support someone, or a family, with Autism.  Remember, those with Autism do not process what they see, hear, taste, touch or smell the same way you do.  If you know one person with Autism, you know one person with Autism.  It affects each person differently.  What "freaks out" one person with Autism may not even be noticed by another.  Patience, understanding, and being willing to take the time to learn are the best tools when interacting within someone (and their families) with Autism.

I would be remiss if i did not take a moment to mention how grateful to God i have been for Marshall University and their Autism Training Center.  Their graduates, and their resources, have been immensely helpful for my family and many of my friends.

Update 20100406:  I posted a follow up to this entry today: A Follow up of sorts

1 comment:

2nd Cup of Coffee said...

Thank you for sharing.I have limited understanding but am learning more and more. There are a couple of children at church with some form of Autism.