Autism Numbers - 1 in 68. Who is celebrating?

April is Autism Awareness Month. I hear so many people asking how others are going to "celebrate". There is no "celebration", unless it is celebrating the accomplishments our kids make. Or celebrating the parents and the family members who make countless sacrifices every day. No, Autism is NOT cause to celebrate.   What it is, is a cause  for panic- why are the numbers climbing? Why is NOTHING being done about it?  Why are so many useless "studies" being done? It's all about maternal age. No wait, it's all about paternal age. Oh no, it's about how close you live to a freeway. GAHHHH!!!

I  use platforms such as my blog, my Facebook page and my big fat mouth to push autism awareness, action and acceptance. I will shout it from the rooftops. I want to make people aware of the EPIDEMIC that is Autism. I don't celebrate it. I don't know many who do. I celebrate my son's accomplishments. I celebrate his milestones. I celebrate his amazing little self- but I DO NOT celebrate the fact that he is 1 in 68 children that are diagnosed with this disorder.We should honor and celebrate those that  live with autism and face and overcome more challenges than a lot of people could ever imagine.  

Then you have Autism Speaks- the first organization it seems that comes to mind when talking about Autism. It is  easily one of the biggest and loudest voices talking about autism.  Some questions I wish more people would ask about  Autism Speaks- aside from why they mismanage the money gained off of hopeful families walking in circles- where are the Autistic people on their board? Why do only 4% of the funds raised actually go to the families that need them? WHERE DOES THE MONEY GO?? 

And to bring up the MOST controversial of topics- the fact that AS has said repeatedly that vaccines and autism cannot possibly have any link to one another, but, in 2009  Dr. Geraldine Dawson says almost the exact opposite. "It remains scientifically plausible that the challenge to the immune system resulting from a vaccine (or other immunological challenges) could, in susceptible individuals, have adverse consequences for the developing brain." and  "Evidence does not support the theory that vaccines are causing an autism epidemic. However, it is plausible that specific genetic or medical factors that are present in a small minority of individuals might lead to an adverse response to a vaccine and trigger the onset of autism symptoms."  Oh- and when I went to look at this interview with her- I got an error message on the AS website ACCESS DENIED. Hmmm... interesting

So if you want to know why I no longer support  AS,  follow the link- you will see one BIG reason why. Autism Speaks Financials shows salaries of upward to $400,000 dollars! SALARIES! Add to that a very large lobbying budget, and the fact that  44% of Autism Speaks’ budget may go  toward research, but only a small percentage of these funds go towards research into improving the quality of life of autistic people.  Hell- I want a CAUSE or CAUSES pinpointed for the huge upswing in Autism- then perhaps a cause will lead to a cure and so on and so forth- but the simple truth is there are already way too many children and adults already diagnosed- who are struggling NOW.  I would love to know how many of these families and individuals have actually received the Autism Speaks Family Grant, and how much they received.  

I know many say that Autism Speaks advocating for a "cure" is discounting anyone with autism, and portraying them as  burdens.  I can understand that. And  I am not an advocate for a "cure" necessarily. But when I talk to the mom who is still changing her 10 year old son's diapers or the dad is holding on to the hope that his daughter will one day make eye contact and say she loves him- I have to say would a "cure" be so bad? 

 All of that said- I do not begrudge anyone their opinions or beliefs.  I will not be rude,  or mocking of anyone who believes in AS. I once did too. And my opinion is not everyone's. Just like my "Educate before you vaccinate" stance- I encourage people to look into local charities for Autism, or The National Autism Association as well, before throwing all of their money at Autism Speaks.  Do your own research- and make decisions based on what YOU feel is best for you. I did.

In  the meantime- I will be an awareness junkie. I will read, research, talk, and write for Autism Awareness, I will shove facts, figures and stories in your face - just in the hopes that you will pass on that knowledge to someone else. This is how awareness is spread- from me to you, from you to your spouse or friend and from them to someone else. I don't expect you to become and expert- I am not an expert - but I know a hell of a lot- and you might  learn a thing or two from me. 

This is not a month to celebrate. This is a month to learn, and to teach. Parents of autistic children, and adults on the spectrum are a wealth of knowledge that only want the rest of the world to understand. We need to tell our stories so that people  will begin to understand and accept our loved ones for who they are, what they are capable of doing, and not what is “wrong with them.”   They are human beings living here with us. They are smart, funny, capable, loving and not going away. 

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!

Raising awareness...not celebrating.

So if you read my last blog  you are now aware that April is Autism Awareness Month. You are also aware that I intend to use platforms such as my blog, my Facebook page and my big fat mouth to shout it from the rooftops. I want to make people aware of the epidemic that is Autism. I don't celebrate it. I don't know many who do.

I celebrate my son's accomplishments. I celebrate his milestones. I celebrate his amazing little self- but I DO NOT celebrate the fact that he is 1 in 110 children ( 1 in 70 boys) that are diagnosed with this disorder.
I am not an advocate for a "cure" necessarily. I know many who say "curing" their Autism would be taking something away from them- making them less than what they were. These are adults I have spoken to that have lived with the disorder and are functioning in the world now.

But when I talk to the mom who is still changing her 10 year old son's diapers or the dad is holding on to the hope that his daughter will one day make eye contact and say she loves him- I have to say would a "cure" be so bad?  Hell- I want a CAUSE or CAUSES  pinpointed for the huge upswing in Autism- then perhaps a cause will lead to a cure and so on and so forth.

But in the meantime- I will be an awareness junkie. I will read, research, talk, write, walk and jump for Autism Awareness, I will shove facts, figures and stories in your face - just in the hopes that you will pass on that knowledge to someone else.  This is how awareness is spread- from me to you, from you to your spouse or friend and from them to someone else. I don't expect you to become and expert- I am not an expert - but I know a hell of a lot- and you could learn a thing or two from me. 

This is not a month to celebrate. This is a month to learn, and to teach.  Parents of autistic children, and adults on the spectrum are a wealth of knowledge that only want the rest of the world to understand.

Are you aware of awareness?

Next month is Autism Awareness Month. And as you all know- I have an autistic  child. So my blog and  my "mainstream" Facebook page will be all over it. I am aware of Autism every damn day- and I  post news articles, fundraising events, advocacy opportunities  and blogs concerning  Autism all of the time.  I share my son's life- his ups and downs and my joys and frustrations pretty much daily.  Just forewarning you all- that in April it will be a constant bombardment. My goal? To educate as many people as I possibly can about Autism.

 Like I said- it is Autism Awareness Day every single day at my house- as well as for anyone else dealing with it. Highlighting a month to be more aware, spread information and put the spotlight on things is a good thing- don't get me wrong- but how many folks (with the exception of those dealing with these things daily) remember squat about these things?  I feel it is my mission to bombard the masses (in my own special little corner here) with facts,myths stories, videos, and whatever else I can do until it is burned into their brain. And if people only remember one thing- just one- and share it with someone else, and they share and so on and so forth, then I have accomplished a small part of my goal.

So let me start by saying that many people (maybe you) rely on what the media tells you about autism. Let me say that the media representation of Autism is built on the most outrageous or sensational things just maintaining a grain of truth.   Not ALL Autistics are Rain Man- that is a VERY small percentage of what is known as Savantism and not all autistic are savants- just as all savants aren't autistic. Believe me- when the word Autism first came up with my boy- that was the first thing I thought of.  Yes- a lot of autistic kids and adults have an area of expertise- my son's happens to be about dinosaurs. He can remember a 100 different dinosaurs names, time they lived , what they ate, but can't memorize his times tables. Go figure.  It's just the way his brain is wired- and that's that.

Autism occurs now in 1 in 100 kids- 1 in 70 boys. This number has changed drastically even since my son was diagnosed in 2006. From 1 in 150, to 1 in 110 and now to 1 in 100. Damn. Scary thought isn't it? Now many will say that the jump in numbers is due to better diagnostics, increased awareness, etc. It IS true that Autism is a SPECTRUM disorder- ranging from the high functioning such as Aspergers Syndrome  and High Functioning Autism, to Severe Autism to PDD-NOS ( which is just a way of saying your child doesn't meet all the diagnostic criteria for Autism- but has enough so we can label them) and yes- to some degree there is some truth to the better diagnostics answer- but I really don't believe that is all there is to it. But that my friends is a blog for another day. 

So this blog is just a preview for the month of April.  I will be writing about different things about Autism, organizations affiliated with Autism. my giant let down by Autism Speaks and my mission to win my son's teacher an iPad for her class and so much more! I am hoping to get some guest bloggers  that I can showcase as well. Hint, hint people! Hit me up- I want to hear what you have to say! Even if you aren't a parent of an autistic child, ask me questions, give me ideas and opinions. It is what awareness is all about after all.