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Monday, April 14, 2014

Authoring Awareness: What's In A Name? (part 1 of 2)

In my recent research I have found a controversy.  The controversy actually seems to be two-part.

This is part one.

I am the type that strives hard to see both sides of every situation.  I feel this is the best way for me to understand it and to decide how I feel about it.  I try to express my decision without it offending the "other side"... so before I begin, please understand that I am not posting this to start a debate.  It is a post of informative purposes and my thoughts... nothing more.  I want every reader to take from it what they will.  That said, here is what I have found:

Part OneWhat's in a name?

There are many "disorders" in the Autism Spectrum.  


Autism, Asperger's, Childhood Disintegrative Disorder, Rett's Disorder, and Pervasive Developmental Disorders.  "Disorder"  and/or "Syndrome" are the common terms you will hear associated with the spectrum but occasionally someone will say "Disease" instead.  Some just say "On the spectrum".  Often times, "High Functioning Autism" and "Asperger's Syndrome" (sometimes shortened to Aspie's) are considered to be the same things.  This has become common and therefore accepted if not exactly correct.

Along with these various terminologies is also the fact that there are so many varying degrees of Autism and Asperger's.  Each of these degrees often categorizes where one falls on the spectrum.  Every diagnosis is almost as unique as the individuals with the conditions.  

Then we have all those acronyms!  

P.D.D., A.S.D., S.P.D., ADHD, etc. Most individuals that are diagnosed as Autistic or Aspie will also be told they have P.D.D. (Pervasive Developmental Disorders).  Kids that are Aspie's will usually also be diagnosed ADHD (Attention Deficit Hyperactivity Disorder).  S.P.D. stands for Sensory Processing Disorder.  A.S.D. is the acronym for Autism Spectrum Disorders.  I'm pretty sure I've missed a few as there are so many!  Many times those that don't fall into specific parts of these categories are termed "P.D.D.-NOS"  (Pervasive Developmental Disorder - Not Otherwise Specified).

I can see where this could be quite confusing for someone with little or no knowledge about these conditions.

If you tell someone, "My child suffers from A.S.D. with S.P.D. and P.D.D."  they might just get so confused that they ask your child to predict their future!  No, that is E.S.P.  Not usually something that goes hand-in-hand with these disorders, but you never know, there might be someone that this relates to!

From what I can discern it isn't the acronyms or the words Autism and Asperger's that bring about heated discussions... it's the other three.

Disease. Disorder. Syndrome.

I think that ever since the movie "Rain Man" most people have at least heard the term, "Autism".  Many have a lot of different ideas and misconceptions but they have at least heard of it.   Recent celebrity advocates (think Jenny McCarthy) have made it practically a household word.  Agree with her or not, when we hear Jenny McCarthy many of us think of Autism.  VH1 Classic's Rock Autism campaign also helped spread awareness.

If you tell someone, "My child is Autistic." or "My child has Autism." most people immediately know what you are talking about... even if they don't completely comprehend what that means.

Asperger's Syndrome is not as widely known.

If you tell someone who has never heard of Asperger's Syndrome, "My child has Asperger's Syndrome."  They hear two things.  A funny word that sounds like you said "Ass Burgers" and the word "Syndrome".

Now, depending on the individual they might giggle and say, "Ass burgers?" or they will shoot straight to syndrome and say, "Oh, I am so sorry.  Are you okay?  Is there anything I can do?"

Those three little words, disease, disorder, and syndrome, bring about the "Bless your heart!" reaction in most people.  They label your child as having something "wrong" with them.  The word disease especially brings about strong feelings... there are so many terrible and even fatal diseases.  Syndrome and disorder tend to bring about more of a "damaged" perception.

Who wants to be labeled as "disordered" or "diseased"?  No one.

I believe the terms associated with these conditions are like so many other medical terms... cold, scientific, and for medical purposes.  They are to help the health care professionals identify conditions.  They are not meant to permanently change a persons quality of life.

The words disease, disorder, and syndrome are medical tools... not  life labels.

Of course, for me, what's in a name goes a bit further.

I always knew my youngest son, who I affectionately call "Thing 2" was extra-special.  I read about Autism.  Some things were like, "Oh yes... this fits." but the majority were not.  I could safely say after a year of research, it wasn't Autism.  So then what?  I knew "it" was something... just no idea what "it" was.

For a long time, when out in public, if Thing 2 displayed one of his oddities and someone commented, "He's a bit different isn't he?"  All I could do was nod, and say, "Oh yes, a bit."

I am not naive.  We got many looks from people that practically screamed "Control your child!" and "What a brat! What kind of parent are you!"

For me what's in a name (i.e. a proper diagnosis) is a relief.  I have a "word" now... I refuse to say "label" and will never "label" my child.  I have a word that explains Thing 2 to those who cannot understand him.

The important thing about words is that they are used to communicate.

I can now communicate to others that my child has Asperger's Syndrome.  I can also tell them what that means.  I can explain his oddities in a way that they can comprehend.  I can tell them that he is not trying to be naughty he simply sees the world differently and isn't always sure how to react to it.  Most importantly I can tell them it is not a tragedy!

While I can see that some parents would become highly offended if you refer to their child as diseased or disordered, I can also see that these words can help the world to understand the needs of a child who has one of these special conditions.

I don't want to label my son... but in the case that I need to explain him to someone who isn't knowledgeable enough to recognize and understand his uniqueness then I am thankful to have the words to do so.

The way I see it, Asperger's is something that will make some parts of life more difficult for Thing 2. It is my goal to help him with the areas he has difficulty in.  He isn't diseased.  He isn't disordered. He is different.  He doesn't need a cure for different.




And that brings us to Part Two of the controversy... the need for a "cure".

I will put part two in my next post (on Wednesday 4-16) in order to keep this one from becoming much to long.



About AUTHORING AWARENESS:

 

 Let's "light it up" more than blue! 
 

I want to light up every color of the rainbow that is Autism Spectrum Disorders! 

Let's do more than be "aware" of Autism this April.  

Throughout the month of April, I'll be Authoring Awareness in order to promote acceptance, understanding, and love. 


 

Won't you join me and share this with others?

 

Other Authoring Awareness Posts:

1:  Authoring Awareness: April & Autism
3:  Authoring Awareness: Why Not Autism Speaks?
4:  Authoring Awareness: Andrea Asay = Autism Acceptance Awesomeness!


* A NOTE ABOUT LINKS IN MY POSTS:

I often link to sites that will explain further about something I have written about.  When it's a topic I mention often I always try to link to a different site each time.  This allows me to share a wider range of knowledge with my readers.  I try to verify that all links are safe, reliable, and working.  If you find a broken link or have other issues with a link, please notify me by posting in the comments or emailing me directly so that I may fix the problem quickly

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