Thursday, April 11, 2013

Why we can't get along.

The Autism parent's community is fractured. It has been for years, and its not getting any better.  The gist of the problem is that one side of the argument sees Autism is a brain disease / injury that needs to be healed/medicated and the other side of the argument sees Autism as a part of the core personality and that it shouldn't be treated at all for risk of damaging the intrinsicness of their child.

I had an interesting encounter on facebook last weekend around this.  Names have been changed below, and i did get permission from the participants in this conversation to use it as a springboard for a blog post.  I'm really happy that we kept the tone respectful all the way through.  If we could, as opposite sides, dialogue like this more often, i think we could maybe bridge the gap easier.

This was the meme posted that generated the conversation:

KM:  I HATE crap like this so much
Me:  Why? (seriously - love to have dialog on it. Because i am pretty sure we look at this from a different angle)
KM :  Well, the stats aren't even right, so it's fear mongering anyway. Regardless, there are many problems associated with Autism, Down Syndrome, as well as thousands of other disorders. This type of thinking promotes eugenics. I will never agree with wiping out an entire 'type' of people just because their lives have more challenges than others. Therapies to teach skills and social functions, yes. But not to change who they are at their core or eliminate them. The vast majority of this thinking comes from parents of autistic children, not autistic adults. Autistic adults do NOT agree (the very large majority of them).  I wouldn't change Dakota at all. Even when she was 100% non-verbal. Even now with her many many issues. We teach her things to help her as an adult, but I would not take away who she is.  The epilepsy portion is bunk too. It does not even remotely double the death rate. At all.  And even if all of that was true? It is still a gift.

Random Other person 1:  i think my autism is a gift.
Random Other person 2:  And's a gift. Every child, regardless of a disorder or illness is a gift...a child is not defined by autism.

ME:  I believe that this is a response to an article on Huff post the other day which featured parents talking about the rainbows and unicorns of Autism. I don't get fear mongering from it,  or promoting of eugenics. What i get, which is likely the perspective i have from our experience with Dominic is a frustration at the denial of comorbid physical illness. And yes, i agree the statistic is wrong. The one that the neurologist gave us so long ago as 1 in 4 boys w/asd will end up with a seizure disorder when they hit puberty and we needed to watch for that. I think Dominic is a gift, and I have forever, but I do not think that his descent at age 3 into regressive autism as the result of a viral brain injury is a gift (again, perspective)

KM:  And I get your view on that side of it too. Dakota was clearly born with Autism. Whereas Lily was not born how she is. I do not see her injury as a gift.

Me:  I happen to be very annoyed that there are so many different "things" for lack of a better term that lead to a dx of Autism. but that is neither here nor there. I would put Dominic's "autism" clearly in the camp of a brain injury, and in fact his original dx was acquired aphasia.

Random Other Person #1: what is the "already high death rate" of autism?

KM:  There isn't one. I don't know where they pulled that from either.

Me:  thats a weird phrase, what there is a a documented attraction to water for ASD kids and a higher number than general population end up drowning // there's documented wandering with the various chances of kidnapping/getting hit by a car / getting hurt. There're vaccine reactions, too, that lead to death. But... because the definition of autism is so broad, painting Kathryn's kid and mine with the same brush, just doesn't work.

KM:  Yeah. I mean, Dakota has a massive flight risk. She cannot be out in a public area without constant hand holding and we have door alarms to make sure she doesn't get out without us hearing her.
But if she got out and drowned, I do not consider that an Autism death rate.

Regardless though, there are many many parents of children with genetic autism that fully stick with the 'cure' and eliminating all autism. I think that is a very awful thing and I feel incorrect things like this further the misconception that leads them to feeling how they do.

I'm certainly not a totally rainbows and unicorns person, but I wouldn't change her. We will work through her various challenges one at a time just like with our other children. We don't think (right now) she'll live independently ever and that's ok.

Random Other Person #3 : My son with autism has said many times that he wishes there was a cure for autism. He says that having it makes every day a struggle. He sees Neuro typical kids and wishes he could be like them.
His father (who has Aspergers) also wishes he didn't have it and would love a cure.
Everyone is different. Some wish for a cure, some don't.
What I wonder is this: If a cure was finally found, do you think they would try forcing all people with ASD to take it (to save the gov't money on health care)?
Or, perhaps it would only be available at a very high price.
This is stuff that my son contemplates. Pretty deep for a 10 yr old.

BABS:  Okay so, I hate this graphic because all the stats are wrong and that's dumb. But I understand what it's saying. AND - 'm one of those people who would absolutely change it if I could.
I was diagnosed at 4 and it's not a gift. Autism makes me awkward, and upset, and anxious, and weird, and disliked and I don't enjoy it. I hate it. I hated it when I was little, and I hate it now. I'm not "living in Holland", and neither is my daughter, neither is the experience of struggling every day with her and listening to her talk about how she struggles.
If I could push a button right now to change it, I absolutely would. Taking away autism won't make her less "like her" - nor would taking away mine change my core. If I took away my spinal disease it also wouldn't affect my core. It's a disease, it doesn't have any positive parts.

I think if my, or my daughter's, autism were taken away we'd be more of ourselves. We'd still be smart, we'd still have our likes and dislikes, but we'd have much less stress and restrictions on our lives and thoughts. I'm all for that.

Me:   And see, these are two of the sides that are so conflicting - the ones who see autism as an illness/disease (genetic or regressive) that needs to be treated/cured and those who see it as an intrinsic part of someones being that should be celebrated not cured. I don't know if the sides are reconcileable and that is too bad. If we could agree to be respective of each other as community (not here, Kathryn and I are having the conversation actually really respectfully) then it would be much easier to do things like push for federal funding, push for insurance reform, etc etc.

KM: I think with me, I feel like if I took away any part of me, I would be a whole different person. I don't think I could eliminate my anxiety and neurosis without changing me. Meds to help me cope are fine. But I wouldn't change me.

BABS:    There's also the fact that so many people with autism suffer from depression, attempt suicide, have anxiety, ocd, and more. These are miserable experiences, and no one would want them... yet they are intricately linked to autism. My anxiety and OCD haven't made me a better person, and while the experiences have shaped me, I don't think it's made me *better*. I think it has limited me. I'd rather have a life less limited, if I could choose.
This is part of what shapes my view: ADHD is often linked with autism, and Tempest suffered very much from the symptoms. After years of alternative (read: useless) treatments, we finally went to medication. Within a month of taking it she went from not being able to read her own name, to reading at a 4th grade level and discovered that she LOVED reading. She hasn't stopped reading since, and it's allowed her to express who she is, learn a ton, and we can have all these wonderful conversations and experiences.
This is just one of many, many, MANY positives to taking the medication.

The meds cleared the ADHD fog from around her brain and allowed us to reach her, reach the autism, and actually start giving her therapies that worked so we could see improvement in her coping skills, communication and happiness.
If she doesn't take her meds, or misses them, she's miserable. Today she missed them and it's been a disaster. She's spent all day unable to do anything she loves, terrorizing her brother and sister... she may be smiling, but she's not happy because she has no control over her actions and can not spend longer than 2-3 minutes enjoying anything. SHE wants the meds because SHE doesn't enjoy being that way. When she does take them, and her major symptoms are controlled, we see more of who she really is. She's allowed to have likes, dislikes, and enjoyable experiences. She can make friends. She can be happy.
So if that's what happens when her ADHD is controlled or eliminated, why wouldn't it be the same for autism? She was born with both, both affect her, and both cause behaviors and experiences that she DOESN'T enjoy (nor does anyone else).

KM:   But you don't think certain good traits associated with autism would disappear too? That's what I would be afraid of. Dakota would talk differently, etc.. if she weren't autistic.

I don't see autism as part of a core personality, I see it as a neurological disease. So I don't see any wholly positive parts, or "core" parts that would disappear. Being able to verbalize more clearly and precisely would be a huge positive for me. I would love to be able to actually speak what I mean 100% of the time instead of sounding like an idiot all the time. 
I also suffer with prosopagnosia, which is highly associated with high functioning autism, which makes me constantly forget people's faces. Even friends I've known for years. I cannot even begin to describe for you how embarrassing, humiliating, uncomfortable and horrible it is to forget my kids teachers because they're out of context (in a grocery store)... or not recognize a friend I've known for 8 years because she cut her hair and mistakenly ask her how her children are (when she has none).
Is that a part of me? Yes, unfortunately. Would it change me to have it gone? Yep. But that doesn't mean I wouldn't LOVE to see it gone. Forever. Today.

No comments: