Behavioral and Disorder. Two Words that Don’t Belong with Autism.

Mama does not like the words “behaivoral” or “disorder.”  It’s time to smack those negative associations down when referring to autism.  Smack them down!!!  lol

You would be surprised at how many people still think of autism as a behavioral disorder, a mental illness or even refer to autism using the “R” word – which Mama hates SO much, that I won’t even reproduce it in reference for you – you can figure it out, I’m sure.  I tell people this all the time, and they are always surprised – Autism is a NEUROLOGICAL condition.   Yes.

Snackie and I were having a long discussion while watching the Oscars the other night (which I thought were really good this year, but that’s for another post) and we were griping about how even the words “Autism Spectrum Disorder” have such negative connotation to them.  We need to come up with another way to talk about this!

I’m not saying autism is a walk in the park for anyone touched by it, but the way some view the words associated with the labels, the depreciating way that someone with autism is sometimes viewed – well, Mama doesn’t like that!  I’m sure other individuals with autism don’t love it either.

First, we need to throw “disorder” out.  Does this mean that any pain suffered by those with autism or their families should be discounted?  No, but we don’t say Cancer Disorder, do we.  The person who has the cancer is not defective, it’s the cancer itself that is causing the pain.

Then, even the word autism is looked at in a negative light.  Like Mama said, so many people have no idea what autism really is, and they just assume that this means a child with a behavioral problem, or that the child is that stupid “R” word.  They assume that they are intellectually “less than.”  And Mama doesn’t like that reference for anyone, regardless of whatever “label” that individual has been “crowned with” from our society.

We ended up enjoying “Spectrum Processing.”  We thought it was important for the individual with autism to be able to categorize their challenges for themselves, but by doing so in a way that wouldn’t depreciate them.

Scientist Carl thinks that we should add another word to make it an even three-letter acronym, like HBP or ESP, because it’s easier for people to reference that way.

Mama has to think more about that one.  Hmm.

Click the link below for a good site to dispel some autism myths…

http://www.ninds.nih.gov/disorders/autism/detail_autism.htm

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MORE LABEL DISCORD.

A friend of mine posted this link to my Facebook wall…well, actually, she is the LITTLE GIRL that I used to nanny, except that she is now 22!!!!

Ouch, that hurts Mama.

To sum up, Aspies are pissed that their label is being considered (by whoever writes the diagnostic manual of mental illness) as no longer a separate diagnosis.

Instead, they want to use an umbrella diagnosis of “Autism Spectrum Disorder”  and lump them in with all of the “Autistics.”

Mama says, why the hell do they have still have autism considered a mental illness diagnosis when it’s a neurological condition?

Also, again, I don’t care if they call it the “Mama Don’t Play That” disorder.  Just make my insurance pay for therapy.

Click link below…

http://news.yahoo.com/s/ap/20100211/ap_on_he_me/us_med_asperger_s_diagnosis

Hi, This is Autism.

A long time ago, back when Ro first got his diagnosis, I almost made matching shirts for us both, emblazoned with that bold statement.

Yes, this is me going back to the same old argument about labels, but I have new thoughts almost every day on this subject, so I must shaaaarrrrrrrrrrrrrreeeeeeeeeee with you! lol

Last week, one of my big sisters, The Tray, who just happens to have a 12 year-old daughter who is diagnosed “aspergers” was chatting with a fellow school parent about mundane kid issues.  

The Tray mentioned something about my niece’s aspergers, to which the parent replied, “AUTISM!!!  I didn’t know she had AUTISM???  Why didn’t you ever tell us??!!!!”

The Tray, being The Tray, replied, “Well, I haven’t needed to tell you about her diagnosis thus far…would you like me to tell you her bra size, because that’s pretty much equal information divulging???!!” 

Okay, maybe it didn’t go down like that verbatim, but knowing The Tray, that’s how I imagine it, and I bet it’s pretty close.

Anyaut, this brings me back to my constant contemplation of label etiquette. 

I don’t introduce my son as, “Hi, this is Ronan.  He’s six, and he has AUTISM!!!  AUTISM!!!  AUTISM!!!

Why does Mama need to share that on the first date?  It’s not like you will need a HAZMAT team to come and diffuse him!  I can see my need for divulging diagnoses if you are a therapist that needs to work with him, or if he does something inappropriate socially that may make someone offended. 

But really, do I need to announce this upon meeting new people every time?  Why not say, “This is Ronan, his IQ is over  140 and he can recite all the states and capitals in 40 seconds or less!”  Or why not share, “This is Ro, and he hates helicopters, but he can add and subtract far beyond his years!  Isn’t that special?!”

 It’s a tough road to navigate. 

I was talking to a mother last week who has a child that goes to school with mine, and she just couldn’t get past how he seemed “different” from all of the other kids his age.  She was just so embarrassed by all of his behaviors, and she had such a hard time with his uniqueness. 

Look, I don’t want my kid to misread “social cues”, in fact, he’s taking special courses and incorporating “social education” into his therapy schedule every day, but what I don’t want, what I worry about sacrificing, is his individuality – his strengths, his admirable qualities – his fabulousness…

Does that, should that,  need to be sacrificed with the “autism” label?

To that Mom that worries about her boy being so “different” –  will your child resent you for really wishing he fit into a round peg when he is square all along???

I thought her child was lovely.

I think my child is lovely.

I think my niece is lovely.

Sometimes, even though I know he needs to learn a different way, even though I know it carries pain, I think AUTISM is lovely.

I don’ t love that he has hurt… what Mama does?  But I love my child with AUTISM.  

Label or not. 

That means nothing.

And he means everything.

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