A Followup To My Controversial Post About “Changing” Our Kids w/ Autism
January 21, 2012
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Now Reading: A Followup To My Controversial Post About “Changing” Our Kids w/ Autism
January 21, 2012
(originally written & published on January 21, 2012)
I just had to write a followup to my CONTROVERSIAL post about how I would want to “change” my son and get rid of his autism if I could.
This brought up alot of debate about why I would want to change the way his brain works. That this would be selfish of me. And why my writing is always so negative and when am I just going to accept my sons diagnosis and move forward.
First off let me remind you that Kyle has severe non-verbal autism. He’s 8 yet his receptive and expressive language test at around 18 months and they have for years! So that’s the autism I’m dealing with.
And while we are going thru a really good stretch right now behaviorally we’ve been thru the ringer in the 6 years since the diagnosis which I detailed in this blog post. So this is where I’m coming from.
Ok, so for those who’ve said getting rid of his autism is changing his personality and the way his brain works. To those folks I say, “I honestly don’t know how his brain works. There are so many debilitating stims and habits that get in the way. So maybe you’re right, maybe behind all the stims and add/ ADHD behaviors theres a beautiful unique autistic mind. So if you want to talk semantics maybe i don’t want to get rid of / cure / change my sons autism, maybe I want to get rid of the tons of things that get in the way of him making any significant progress. But in my sons situation that’s everything, the stims and behaviors and autism are all intertwined.
And for those who thing my writing is always negative and that I should just accept his diagnosis and move on… Maybe you haven’t been reading this page or my FB page too much.
This whole page was built on the idea that it’s ok to complain about the crappy hand we’ve been dealt. I could never find a place where people admit that it sucks and that it’s hard and that it’s ok to admit that you need help. So i created the Autism Daddy FB page and blog.
Nothing bad happened in my sons life this week that made me right that blog post. Our lives have been like the movie “Groundhog Day” where we’ve been kinda living the same day over and over for about 3 years now.
I wrote yesterday’s post during my lunch break at work when I read another comment on my FB wall saying “I wouldn’t change my kid for the world.”. That phrase always irked me and I quickly wrote a blog post about it.
And of course I accept my son’s diagnosis. I’ve accepted it from the beginning. And I love him with every fiber of my being. But I am so scared of his future. So forgive me if I want to change his autism to make him at least self sufficient enough to care for himself when we are gone. Forgive me if that is selfish of me.
Also you should know that alot of the things I’m writing about lately are not necessarily things that are on my mind now, but maybe things I’ve dealt with years ago, but now that I have this platform with 3000+ readers if I can help someone with something I’m going to do it… from something as simple as getting a handicap placard for their ASD kid, to not feeling guilty about needing antidepressants, to yesterday’s post that it’s ok to admit that you’re mad as hell at the Big A.
I feel like nobody else is talking about this so I will. So that’s why my blog might sound more negative than others. But negativity is not my life and if you follow my FB page and my blog you’ll get the balance you are looking for. We are a happy family of 3 whose lives revolve around our son and his happiness.
But one thing I have to say is that while I think it’s ok for us ASD parents to INTERNALLY debate whether we would want to rid our kids of their autism we shouldn’t so easily say that to the outside world.
I say this for 2 reasons…
1) I think us ASD parents should stop acting so damn strong. I don’t want pity as much as the next guy, but there’s no shame in saying you are overwhelmed and need help.
2) if you want to fight the insurance companies and the government for more autism coverage and better diagnosis than you can’t be telling the world how great things are. We need to be a unified front both LF & HF telling our horror stories to the world so they ll get it.
I’ll leave you with something I wrote in a previous blog post that kinda fits into this line of thinking…
“…lately when autism is on the news it’s a feel good story about a high functioning kid doing something great and profound. And I think that spins autism in too positive a light. It makes people think that autism is not that bad. They’re just a little quirky like the Asperger’s rocker on American idol. I think America needs to see the dark side of autism more often, like my son, the nonverbal, non-potty-trained 8 year old who bangs his head, won’t eat, has crazy stomach/ bowel movements and severe ADD & ADHD on top of his severe autism.
I like to read the feel good stories too…but the feel good stories are all you hear/ read/ see about autism in the mainstream media. And I honestly think when we are fundraising or trying to get more government $$ for autism if all people know are the feel good stories, “why give them research $$, they’re just quirky kids….” the kid that scored 15 points in the basketball game, the aspergers guy on amazing race, etc…”
That’s all I got for today. The end. Controversy over…
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).