Wednesday, October 3, 2012

"high functioning"...

this term is really a wolf parading in sheep's clothing...(this is actually a phrase calvary would have an incredibly difficult time processing and understanding)...but the image actually works here. 
i have been processing my emotions towards all things autism for quite sometime now but this issue of "high functioning" is one that seems to perplex me the most.
i mean, shouldn't it be a good thing that calvary is referred to as "high functioning" to outsiders and casual passer-bys?
i think so.
but why, then, does it bother me? 
i clearly do not want my child to be viewed as having certain limitations.  i want the best for him.  i want a perfectly "typical" life for him. 
but...it really, really, really hits a nerve every time i hear:

"well, he must be very high functioning."
"i would have never guessed..."
"he seems perfectly normal to me..."

i know that everyone that says these things are well meaning.  i know that they are simply stating what they believe that i want to hear. 
but i don't know how to respond...

should i say, "thank you?"
because to me, saying thank you, implies that i would somehow not be pleased if he didn't appear to be "normal".
i don't want calvary to overhear me say thank you and believe then that i wish that he was anything other than what he is. 
when someone says that he doesn't seem autistic and they mean it as a compliment underhandedly insults him as someone who is actually indeed autistic. 

i have worked very hard to help ensure that calvary never sees his autism as a handicap.  i want for him to know that he is awesome. but all of that is undermined when the ability to appear normal is what is his greatest autistic feat. 

the truth is calvary is not normal.
he is smarter than average.
he is more detailed than average.
he has an ability to do things on computer games and video games that most adults cannot.
he sees patterns and puzzles in everything.

i don't want to take that away from him. 
and even though there are some awesomely non-normal things about calvary there are some horribly non-normal things about him as well...
and if i was to be honest, it irks me when that is not recognized as well.
parenting calvary is tough.  it is harder than parenting all three of our other children all together.  it takes more emotionally and financially.  and although he may pass for a typical child there are battles that we have fought that most people have not. 

it somehow takes something away from me when someone looks at me as if we have made a mistake or the doctors (multiple) have made a mistake in the diagnosis.  all of the battles...all of the meltdowns...all of the anxiety (his and ours)...all of the social struggles...all of the moments where communication is completely lost...all of these moments are lost and erased the moment someone looks at me like we are wrong. 

we've worked hard at making social outings successful.  we have worked hard at helping calvary deal with his anxiety.  and even harder at helping him deal with aggression and irritability. 
so, it is a wolf in sheep's clothing to hear that calvary is surprisingly autistic at moments because of course i want for his social outings to be seamless.  but my goal is never to help him "appear normal" as if that is the statue of our limitation...

i am not even sure that this makes sense now that it is written down.  i was hoping that i could make something coherent out of my inner turmoil with the term if i started writing but i am not sure i accomplished that.  but its out at least...right?
sigh. 

3 comments:

alli said...

People are ignorant. Not just to autism, but to adoption and many other things. No matter what you do, you will always encounter folks that say things like "he doesn't seem like it" and other dumb statements. You should not let these folks phase you at all. They haven't walked in your shoes and never will. If you must respond, either use that time to educate the person on the autism spectrum, or simply say, "well, he is" and leave it at that. You owe them no explanation. The fact is, most of society hears "autism" and immediately thinks of an extremely disabled child that has speech problems and is visibly not able to be social...and that is just not the way it is.

Traci said...

I think you explain yourself beautifully. You are a great spokesperson for Calvary and autism! Yep Alli is right the questions and the stupid comments will always be there... despite our wishes for them to go away.

Katherine said...

I feel exactly the same way.