Sunday, December 9, 2012

He's Autistic vs. He has Autism What is the difference?

I have learned a lot over the last 7 years navigating the world of autism. I have learned so many three letter acronyms, supplements, vitamins, therapies, I am surprised my brain can remember any of it. It's not like I don't have anything else to remember, what having a house to run, a degree to finish, a teenage daughter to manage and a husband to take care of.

He's just a happy kid
One thing over the last year I have really started to notice more and more of, is the difference being placed on  "Autistic" and "Having Autism". I really never saw a distinction between the two.  In my mind, they both mean the same thing. My child has autism. My child is autistic. Even typing them out doesn't change it for me.

There are some that think that autism is the whole person. That it isn't a set of neurologically messed up symptoms that make up the diagnosis of autism.  Some think it is just someone who acts quirky, or bangs their head, or can recite numbers. Even with all the "awareness" that is being shouted from the mountain tops, people on the outside of autism still don't really have a clue as to what it is!

 "Autistic" can be used as a small description of one's identity. Whether autism is potentially curable (something I hope for) or permanent, it affects so much of how each individual  observes, understands, and operates within the world. So referring to someone as “autistic” might tell you a lot, but NOT everything about them. Saying "has autism" is like saying "has a cold" and implies that it is something that the child won't always have. That a cure is possible. (I HOPE SO) That years of behavioral training and learning coping skills won't be necessary for those considered "high functioning" to be able to function highly in society.

There is a mindset of "person first" terminology- and saying "Has Autism" apparently puts the person before the diagnosis whereas saying "Autistic" is putting the disorder first and implying that the person is defined by autism.  WHAT?!? It's so confusing to me- and as I said, I use the terms interchangeably, depending on who I am speaking with, or how it flows in my writing.  

Which brings me to my next point- the talk of damaging a child's self esteem by talking about wanting a "cure" for autism. This is going to be a controversial issue- as so many believe that autism is a part of their child, and many autistic adults feel it is a part of them, and talk of a cure is demeaning and cruel. 
I call bullshit. At least from the perspective of a parent raising a child on the spectrum. I am a "lucky" parent in the world of autism. The Boy speaks (some days he never stops) he is potty trained (although accidents still happen) he is what is considered "high functioning" and  for that I consider myself "lucky." He didn't always speak, he wasn't potty trained until he was 5 and the meltdowns he had were daily in nature and it changed the way I had to do EVERYTHING.  Now that he is older, the meltdowns are fewer (but no less volatile), he can be reasoned with (to a degree) he can dress himself, he can feed himself and he can be responsible for small things. At 11 however, he is still markedly immature in comparison to his typically developing peers and the things that most 11 year old boys are able to do, he cannot. There is a BIG difference between neurotypical 11 years old, and autistic 11 years old. Pretty much any neurotypical age is much different than the autistic age.  But what he CAN do is my focus, and even though I work on the deficits  I still nurture the abilities.  So if someone came up with a "cure" for autism- you damn well bet I would be all over that. I have said it before, and I will say it again- AUTISM DOES NOT DEFINE MY SON!   He is smart, and funny, and adorable and loves dinosaurs. Would this all go away if I could "cure" his autism??  I don't believe it would.  And when I talk with autistic adults, I ;listen to how they are proud of their differences, their differently functioning brains- and that is awesome. But I also hear how getting to that point in their lives wasn't easy, and required the same stress and hardship of going through childhood that I am getting my son through.

Being autistic and having autism mean the same thing to me.  If you ask my son he says it doesn't matter to him either. "Having autism" is not a bad thing, and can be compared to saying "My son has brown eyes." Yes, he is  different from those who may have blue eyes, but that doesn't mean he has a problem. And it's the same way with "being autistic". He is not  "being a problem,"he is just "being" him. Another way to think of it: having a difference verses being different. Two separate phrases, both mean the same thing. Language really isn't an issue unless you make it one. Focus on the good things!