Friday, February 28, 2014

Raising an Autism Red Flag


Let me just start with this. We are so lucky and fortunate and blessed to have an ARMY of people at our school, friends, family and physicians that support us 100% through autism. They help us give Jackson the best chance to be successful at everything he does and never tell him he cannot be a part of anything he wants to do and for that I'll be forever grateful. With that said...

Controversy. Drama. If it's not one it's the other. No matter what you do in life, there is always going to be some kind of controversy. Whether it's the latest hollywood gossip about some celebrity and their trashy habit that sets a bad example for your kids or a friend of a friend of a friend that made your other friend mad blah blah blah blah blah. 

So fine. Let's go there. 

The controversy of diagnosing autism. In recent years in the autism world there has been a lot of back and forth about the DSM 5 Concept of Autism and how it would affect future diagnosis' and those who are already diagnosed. In English, the criteria for diagnosing autism will change and the new classification system eliminates otherwise separated subcategories on the spectrum. Meaning children diagnosed with Asperger syndrome, PDD-NOS, childhood disintegrative disorder and autistic disorder will be placed under a big broad umbrella of simply autism spectrum disorder (ASD). And from that poses the frequently asked question is "will my child lose his diagnosis?" And the response? Straight from AutismSpeaks' page 


In other words, if you have a diagnosis for ASD, you have a diagnosis of ASD for your life and should be entitled to appropriate interventions for the rest of your life. Need for individualized services may change, and you or your child may need different levels of support or different interventions as you or your child age.  

Excuse me, but what the hell? 

I challenge someone who is qualified in the autism industry to give me a real answer. I'll take the risk of someone seeing this in the media or some medical person or what not tearing me up as a parent that's mis-informed, not qualified or uneducated or however they want to spin it.

#1 - WHY on Earth stick all of these kids and diagnosed people under this giant umbrella together? I think every parent out there of an autistic child will agree with me that every child with autism is different, which they ARE, does that really do anyone any good? Way to take the one-size-fits-all approach. Read between the lines - that's a cop out. 

#2 - You "brilliant" people focus on the wrong "C" word. You steer parents to the COPE for life when you should be looking for a CURE for life! It's been said there is no cure for autism, which I completely disagree with. You say there are treatments, great I love treatment. You say there are things that make it a easier for these individuals, I agree and am extremely grateful for everything we have that helps make our days easier. But where are the answers for helping people with autism no longer have autism? Kinda like sweeping the dust under the rug don't ya think? You can't see the dust, you treated it with the broom, but the dust is still there. 

#3 - It's a mentality of pushing aside controversy no one wants to deal with. Because it's often easier to medicate these kids and just send them on their way and we'll see ya in 6 months to write another scrip. Wash, rinse, repeat much? 

#4 - We don't all want to keep our "label". We get to keep our diagnosis for life? Gee thanks, how will we ever repay you? If it's needed, then so be it. Maybe everyone cannot overcome their autism, I get that. And while my son NEEDS his "label" for a million reasons right NOW, I have the hope that one day he won't need it anymore because he beats autism. And he's come a LONG way, so why can't he go all the way? What's wrong with wanting to beat autism? 

#5 - Sure, you can win for now. I admit we cope everyday, we have a long journey ahead of us, just like all families that are living with autism do. We fight for our son everyday and we love him unconditionally, but I cannot mentally accept just coping and dealing with autism forever and thinking this will always be something we just have to "live" with. Or at least I'm going down swinging. My hope is that we overcome autism and leave it in the dust one day. Will it ever happen? Is it even possible? I guess that's to be seen, but the mentality of our society just accepting that these kids are different and never looking for a way to beat autism is complete crap. Of course they are "different", we are all uniquely different you idiots.

I can't speak for all parents of autistic children, adolescents or even autistic adults. I speak for myself and my son only, but the thought of someone saying to me: "Your son CAN overcome all the adversity and no longer have autism" would be like winning the lottery to me and I am guessing I'm not alone. Does it mean that I'm not grateful for all the therapies, teachers, doctors and yes even medicine to help him sleep that we currently have in our everyday life? Of course I am grateful. We need all of that right now and I have accepted our diagnosis for a long time. I was even happy for the diagnosis because I know we needed it for Jackson to get the services he needs to succeed. But do I plan on him needing that forever? I sure as hell hope not and I'm going to do everything I can to see that we win this fight. 

~EM




No comments: