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Wednesday, April 16, 2014

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

This is part two of a two-part post!  
To read part one first please go here:

Authoring Awareness: What's In A Name?
(posted Monday 4-14-14)


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

This is part two.

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 Two:  A "CURE"?

Most of us, when diagnosed with an illness, disease, disorder, or syndrome want to know one thing...

Is there a cure?

Naturally, if we learn we have a fatal disease the possibility of a cure becomes immensely important.

The controversy with Autism Spectrum Disorders lies in the fact that there are such deeply varied degrees of the condition. A parent who has a nine year old child who is non-verbal will be more responsive to the thought of a "cure" than the parent of a child who is simply having problems tying their shoes and going to bed on time each night.

My youngest son (who I affectionately call Thing 2) doesn't have Autism.  He has Asperger's Syndrome.  Yes, it is part of the Autism spectrum, but compared to children with severe Autism, he has a very mild form.

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 is different.  He doesn't need a cure for different.


Thing 2 struggles with reading and writing.  He excels in math, science, music and art.

I don't wish to "cure" anything about him that allows him to excel.

I do wish to help him where he struggles.

I want to teach him the skills he needs to get around in this world, not to "cure" or "normalize" him.



Many notable people, who most of us look at as geniuses in their fields, would likely be considered "on the spectrum" today.  Some examples are Einstein, Mozart, even Bill Gates.  Dr. Temple Grandin suggests if there had been a cure for Autism Silicone Valley wouldn't exist. 



Certainly, we wouldn't want to cure the world of artistic, musical, literary, and scientific genius.


Individuals with Asperger’s syndrome don’t have hidden agendas. They tell it like it is.  What you see is what you get.  They don't hold grudges or prejudices.  They are a bit more tolerant and understanding of other people's quirks and challenges.  They have  unique and refreshing perspectives.  They are determined and will persevere. They have high intelligence and integrity.


Why would anyone want to cure someone of such outstanding positive qualities?

It's not really a "cure" we seek for those individuals... it is help in the areas that they have difficulties in.  It's not a cure so much as it is assistance, guidance, and support.

However, we cannot resist the movement to find a cure for those who are on the other end of the spectrum... those who cannot have a functioning daily existence.  I would never imply that if your child cannot sit up, feed themselves, or communicate with you on any level we don't need a cure just because my son isn't as challenged.


I have read where people have posted things like, "Don't post to me about finding a cure! My child isn't diseased!"  I have also read posts that say, "Please, help spread awareness, let's find a cure, my daughter deserves a chance at a normal life!"


There is the catch... "normal".  


In terms of this child deserves a chance to have a life in which she can communicate, take care of her basic human needs, and find some measure of happiness and success in making her dreams come true, AMEN WE NEED A CURE!  In terms of  this child should walk, talk, and think like the rest of the world... NO THANKS.

Assisting individuals on the Autism Spectrum is crucial.  Every one of them needs to be given the help and the chance to live a happy and fulfilled life.

That is what a "cure" should be about... it's not about "normalizing" an individual who has some unique and often extraordinary gifts... it's about helping that person be able to access and use those gifts.

If your child is high-functioning or Asperger's, please don't get offended when someone says disorder, syndrome, or even disease.  It is extremely important to have some type of (forgive me) label to describe the varied characteristics that are common with these conditions. Receiving a diagnosis may be the best thing that can happen for a person on the spectrum!  A person might wander around for years knowing something isn't quite right, things don't make sense to them, but having no idea why, if we didn't have a way to define it.

Don't fight against campaigns seeking a cure.  The organizations seeking a ‘cure’ for Autism see aspects that are debilitating and want to take those difficulties away.  There is nothing wrong with wanting to help someone have a better life.

Do I need a cure for my son?  No.  I need guidance on how to help him better understand the world around him and I need advice on coping mechanisms to make his world a little less stressful.  I don't per-say need a "cure".

Do I want a cure for Autism?  Yes.  Absolutely.

I don't want to change or take any gifts away from someone with a spectrum disorder.  I do want to help those who need help in specific areas of their lives.  A person with great gifts that cannot communicate is unable to share those gifts with the world.  I want to see a "cure" that allows them to keep their gifts and allows them to be able to use them effectively to make their lives and our world a better place.

Those that are on the spectrum need help with learning practical skills, not moral judgments.

Words do matter.

“For many of us on the spectrum, a parent’s stated quest to “cure” our Autism feels sort of like a divorced parent constantly criticizing her ex in front of us kids. As that kid, I know I am half Dad, and half Mom. So when Mom tells me Dad is no good, what is she saying about me? For those of you who think this is metaphor, let me assure you it’s not.
 If much of my life is defined by autism, and autism is a terrible thing, how do you think I will feel about myself? I ended up in special classes because I am autistic. I flunked out because I am autistic. I already know I am disadvantaged with respect to others who are not autistic. 
I don’t need more stuff to feel bad about.”  -John Elder Robison (Author of  "Look Me In The Eyes")

The power of words influence and define how one sees themselve.  When the word “disease” and “disorder” are constantly attached to who you are it's nearly impossible to see yourself as anything but someone that is flawed.  The thought that one needs to be “cured” of a disease or disorder implies that one is fundamentally damaged.

I don't introduce my son, "This is my son. He has Apserger's Syndrome."

I introduce him as who he is, "This is my son."

If situations arise that make it necessary to explain some things about Thing 2, then yes, I won't hesitate to tell you that he is putting sand on the slides to test the variable degrees of friction and velocity on a sanded and non-sanded surface.  If you must know why on Earth he is doing that instead of sliding, then yes, I won't hesitate to tell you what I know about Asperger's Syndrome.

I don't discuss his appointments or therapies in terms of a "cure".  I tell those that ask the same thing I tell Thing 2.  We are learning, together, how to help him feel better an have an easier time with learning the things that frustrate and confuse him.

I have come to the conclusion that what we need are not "labels" as much as empowering words to define the wonderful (albeit sometimes challenging) differences that those on the spectrum possess.

We need more than a "cure".  We need awareness and most of all acceptance.



We need to teach the world to embrace those that think a bit outside the box, and especially those that aren't aware there is a box. 

So to put the pieces of this part of the puzzle in their places I offer the following:

1.  Do not judge by what you think you see.  There is a lot more going on under the surface and behind the scenes.*   This applies to everyone, not just those you meet who are on the spectrum.

2.  Offer assistance to those that seem to be facing a unique challenge.  Do so with kindness and understanding, not the intentions of "normalizing" or "correcting" a perceived flaw.

3.  Accept not only the gifts but also the oddities that are often part of the package. Everyone has a mix of strengths and weaknesses.

4.  Don't assume that someone is bad because they are doing something you deem "strange" or "inappropriate".  There is no "good" or "bad" in a neurological difference.

5.  Embrace the diversity around you.  Don't set out to make every duck a mallard... in doing so you miss out on the swans.  In the same respect don't try to turn all the swans into mallards either!

You've seen this here before but it bears repeating:  

“Everyone has different gifts and abilities; it’s what you do with them that matters.”


 * In number one, I mentioned "There is a lot more going on behind the scenes."*
Please, listen to this song, it's a great reminder that all of us are facing our own private battles...





I watched the following video from Dr. Temple Grandin before writing my post, I encourage you to watch it as well.  Dr. Grandin has her PhD in Animal Science, and is the author of multiple books on autism.  She is a professor at Colorado State University, and has become an advocate and spokesperson for persons with Autism and Aspergers.  Dr. Grandin argues for neurodiversity.   Neurodiversity is an idea which asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be recognized and respected as any other human variation.   Differences may arise in ways of processing information, including language, sound, images, light, texture, taste, or movement.


 


If you enjoyed reading this post, please share it! Thanks! 


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 
2:  Authoring Awareness: What's Up With That Bratty Kid?
3:  Authoring Awareness: Why Not Autism Speaks?
4:  Authoring Awareness: Andrea Asay = Autism Acceptance Awesomeness!
5:  Authoring Awareness:  What's In A Name?  (part 1 of 2)


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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