Why we need Autism Education more than ever

Do you call it "awareness"? Maybe you prefer "acceptance"? Whatever term you prefer to use, you're going to be close to the same mark. You can't have one without the other and you can't have any of it without education. This is more important now than it's ever been and that's not a issue that will decrease with time. I'm writing this to provide a list of reasons that prove what I'm saying. I'm even going out on a limb to say they're irrefutable. Let's see what  you think:

Because it's on the rise:  Right now the national averages put autism at 1-88 children. In some places it's more like 1-60, others it's 1-100, but 1-88 is the average ratio. That is an increase in cases from just 5 years ago when the average was 1-100 with the variation being more 80's to around 110. It's hard to say just how the new DSM is going to affect those numbers, but I don't see them dropping. Asperger's as a term may have been dropped, but it's being called simply "autism". That actually could raise the numbers even higher as the forms are lumped together and measured by severity instead of name. Further proof comes from a simple truth that supports the increase in numbers. It's a force of Nature because:

It's hereditary: Children with autism are growing into adults with autism. Just like I did, they are having children with autism. It's the cycle of life and nothing is likely to stop it anytime soon (save a planetary disaster). While all factors of this are in controversy, the hereditary nature is agreed upon. Check out this Wikipedia article. If you hate Wikipedia, maybe the Mayo Clinic is enough to convince you? As both point out, autism has a "strong hereditary factor". So, as long as people grow up and have kids who grow up and have kids, this won't be stopping anytime soon.

Because it's controversial: Autism brings controversy in ways never seen by a medical condition in history. It's the most controversial medical condition ever. You see it in commercials, talks online, in groups, and at gatherings. The autism community is split into factions as much as religion or politics with people who defend their beliefs with equal tenacity. Just look at all the fights over Autism Speaks. There are thousands of supporters to Autism Speaks and just as many who hate them. Someone who reads this will hate me just because I mention their name. Speaking of that, the division of the community is so bad that groups will resort to borderline racial slurs of each other. So autism, not only has it's own scale of belief systems but; for some, it's almost its own ethnic race. All of this goes to the level of picket lines and huge demonstrative gatherings for each side. If there's one thing that shouts for education to save the day, it's this! Further controversy goes into the fact that there are still hundreds of people out there who don't believe autism is even real. That includes some doctors.

Because kids go to school: IEP's are going to become even more common than before. Some public school systems complain that they are overrun with IEP issues. It gets worse because most states seem to think that this is the time to cut funding to schools across the nation. Thanks to population growth and the fact that autism is on the rise as documented, they couldn't make a worse decision if it involved drilling holes in their heads. Kids with autism have vastly differing needs. That means more IEP's. That means more costs. They need more funding, not less. So there's another entire group of people who apparently need educating (and they're supposed to be educating our kids).

Because autistic kids become autistic adults: In recent years a genius leap was made where people realized that kids actually grow up sometimes. That created a whole new scale of needs, support requirements and need of education on its own. Strides are being made forward, but more is still needed. As the autism community grows you can bet the need will.

Because of the Media: Let's face it, the media hasn't always been an ally to autism. Sometimes they fudge it up and wind up creating an image for autism that's completely off mark. Some small efforts have been made to change those mistakes, but they are small. I'm talking about the mention, clear at the end of a segment about Adam Lanza that pointed out; "people with autism are no more prone to violent crime than anyone else".  Yep, one whole sentence. I'm glad they said it. Still, keep the media properly educated takes a constant and diligent effort. Not only is there the news to deal with, but an explosion in "autistic" characters in television and movies. That means we have to work even harder to make sure people understand that we aren't all like Dr. House or Sherlock Holmes. We aren't all like Will Graham (of Hannibal) or the boy from Touch. While they're interesting characters, they don't hold a candle to what all of our community is like.

Because of insane costs: Families with autism still face way too many out of pocket expenses. Some of this comes from difficulty getting the professionals to see how much help is needed. Some of it comes from insurance companies not covering all facets of treatment. Insurance companies need education like anyone else, and it appears they still  haven't got it all. Google "autism costs" and get ready for a reality check. With numbers growing, you can bet costs won't be going down.

Because of social ignorance: Where couldn't I go with this? How about the shocking unemployment rate among autistic adults? The reports of difficulty getting halfway considered for jobs are out of this world. It's ridiculous. Good people are falling through the cracks of equal opportunity. Other disabilities still take a hit, but it's harder to prove with "invisible" conditions. Well, employers are in for a wake up call in coming generations, aren't they? Then we can look at bullying and abuse that still happen because it's chaos growing up with autism. It's all over the internet and national news somewhere every day.

Because of apathy in emergency services: Not just apathy, pure lack of education. While there are programs touring to help police, fire and ambulance work with people who have autism; they're going to have to up the ante. Where you once had one autistic child in a household, you now have a whole family on the spectrum. As long as there are people being beaten, pepper-sprayed, and tazed for little more than having a "quirk", education will be a top concern. Obviously, someone didn't know enough and a tragedy happened. People are dying from this.

Finally, autism isn't the only community growing by leaps and bounds with hereditary issues. Bipolar is keeping a steady pace. Mental illness is on the rise in our country and around the world at alarming rates every year. Along with that is an equal increase in discrimination and stigma. It's not a fun life for people with these conditions. For those who say "just lock up all the crazy people", they best be careful. One day that might just be everyone.

What does understanding mean for us?

What is it that we really want from the general community? Acceptance? Understanding? Equality? I think, in one way or another, all of those apply. I think, however, that understanding is the most important because it leads to the rest.

People who don't understand have come back with comments like:

"Why should you get special treatment?" and "Just get over it." or "You look normal to me." These are dismissive statements and I don't know about the rest of you, but I don't like them. They belittle my struggles and those of my son. These are the same kind of people who would see a melt down or odd reaction from one of us and call us "weirdo" or "strange" or "psycho". That is where the education is needed. That is the understanding that I would like to see corrected. Understanding means some of these people stop labeling us and creating stigma in the community.

Stigma in the community makes outcasts out of innocent people. It makes it hard to get jobs. It makes it hard to walk down the street with any dignity. It's degrading and wrong.

And why are any of us so sensitive to this acceptance? I think it's because our difficulties make us sensitive to it. When things don't come out they way I intend them to in conversation or what ever social issue, I cringe and it's usually too late to do anything about it. When I have one of my sensory issues, well, I've had a careless stranger outright call me a wimp. He looked like a jerk to everyone but I really wished I didn't have that sensitivity.

So what are important things to know when someone says, "I have autism"?

-No matter how normal I seem, there are times I won't be.
-It doesn't make me dangerous.
-My reactions won't always match given situations.
-I will miss social cues and facial expressions.
-My "strangeness" should be taken with a grain of salt and I should not be an outcast for it.
-There are things I cannot tolerate because my sensory input doesn't work right.
-There is a person in here, get to know him before you judge him.

And for kids:

-Odd behavior does not equal dangerous behavior(to others anyway- there are exceptions).
-Same sensitivities and reactions as above.
-Autism is not retardation. It is possible to have both, but it is not the case in every person.

I think people should know that the person trapped within can hear them. I grew up being called "that effed up kid". I remember the people who said that about me and it didn't feel good. So what we really want is to be understood because that would allow us to work easier with the world around us. We're different and interact with the world around us the way our senses lead us. We can't control how we are wired.

I'm sure there are many things that can be added to this list above. Feel free to add them in comments.

Acceptance and understanding

That's what people of the autism community really want, acceptance and understanding. I've actually found people confused by this. Various attitudes out there make it more difficult to educate on the idea. Attitudes of "why can't you just get over it" or "just shut up" or "you look normal".

What they don't get is that we have social difficulties that haunt us in everday life; some worse than others. Yes there are those who aren't bothered by it at all, but look aroud, does everyone really look identical to you? They aren't; they're fat, thin, short, tall, and varying shades of color. The same goes for the affects of autism in each member of its community.

You may be frustrated by the strange behavior or reactions that don't make sense to you from some person who actually has autism. But the truth of the matter is that person is likely just as frustrated. That's because he didn't intend that outcome in the first place. Imagine trying to say good morning but having your body or facial expression do something without your consent in the process. Or imagine that your brain won't let you recognize facial expressions and body language in others. You can slowly learn it with intense study and assistance (like I had to have), but for the most part, it's hard work. Wouldn't you appreciate a little understanding from others as you struggle?

I've seen others with worse effects in autism than me and I've seen them struggle. I had them ask me why they couldn't catch the situation before they did something they called "stupid". I told them they aren't stupid, it's part of our condition and we have to get past the issue of those who don't understand. We have to take the opportunity to educate when we can. But you see, there's one expression we learn really fast and that's shock. Shock we never intended to cause and that's very frustrating.

No one wants to be socially impaired and having that problem creates an internal struggle in a lot of autistic people. It can make us try too hard which brings the opposite of desired effect.

So, next time you see someone do or say something that doesn't match the situation very well and it kind of shocks you. Try to pause and reflect for a moment on what made that person do that. Was it autism? Other disorders cause it too, but you get the idea, I hope. And I'm not saying we're all trustworthy either, that's a different scale of issues.

I'll end this with a quote from the movie, Mozart and the Whale: "Autistic people want to be social, we just really suck at it." (Not entirely true so take it loosely).