Thursday, September 29, 2011

Autism: What they want you to know

Recently I posted a question on several autism Facebook groups and my own Facebook page. The question was: What do you want people to know about autism? The answers not only provide an educational view but demonstrates varying views of having autism. I'm going to go over some of those response here and I hope you find them enlightening. As always, feel free to leave a comment (comments moderated for language).


-Autism is treatable, not contagious, not the end of the world, not a death sentence: From mild to severe, autism's comorbid effects are treatable and manageable (though to varying degrees). Parents of children with autism want you to know that their children are under medical management and not going to drop dead in the middle of some grocery store or park. In the same light, if you are a parent of a newly diagnosed child, it's not the end of the world. Learn about autism and research it heavily. It's one of the best things you can do. Finally, autism is not contagious. No one is going to turn autistic by being around someone with autism. I don't care if he or she sneezes on you directly. You may catch a cold, but not autism. So there's no need to snatch up your kids and flee the neighborhood park on sight of anyone with autism.

-People with autism can rise above their challenges: Even some children or adults with severe autism may surprise you. While there are people who need help for the rest of their lives, there are just as many (more in fact) who can do all sorts of things. There are lots of children who are in mainstream classes in school, capable of dressing themselves and learning complicated tasks. So, just because someone has autism, it shouldn't be assumed they'll do nothing for the rest of their lives.

-Don't apologize to us: One parent pointed out the annoyance of people sympathizing with her as if her child were already dead or lost forever. "Oh, I'm so sorry to hear that" is fairly insulting. As a stranger you don't know anything about the person you're sympathizing for. How do you know they need it? How do you know how they even feel about autism? They may be managing perfectly well and only told you for sake of education and understanding. I've had this said to me over my own autism and I said "Not needed, it's my challenge and I live with it just fine".

-Autism doesn't stop because of age: Several parents want you to know that autism doesn't mysteriously go away because of age. It doesn't stop because someone turns 6, 7, 16, 21, or 60. While a select few have treatments that can effectively bury their autism, most will always have something that shows. Many will continue to need certain supports or treatments their entire lives. Remember the above as I say this, though, because needing support or treatment doesn't mean you're a total invalid.

-It needs to be managed, not fixed: People with autism, who area able to communicate this, want you to know they don't need to be fixed. As above, autism is treatable with various support, training, and even the occasional medications. While needs vary by person, it doesn't mean they are broken.

-We have feelings, are still people, need friends and social interaction too: It's also said that just because someone is non-verbal, doesn't mean the don't understand you. There is a movie called "Mozart and the Whale" where the main character is a man with Asperger's who runs a support group. He says in the movie, "We actually want to socialize, we just suck at it". Again this isn't typical for everyone, but it's fairly true by my experience. So, keep in mind that, just because their condition can isolate them, it's doesn't mean they like it or want to be that way.

-It's an invisible disability: It's not a fad, over diagnosed or over blown. Not everyone is disabled by it, but some are and some severely. Just because you don't see missing limbs or deformities, doesn't mean they have no struggles or aren't disabled. Most people who make the insulting observation: Well you look normal, are forgetting something. I have yet to meet just one person who says this who is a doctor. People with autism or even bipolar, don't want to hear about how normal they look. They find it belittling of their struggles and insulting. Having these conditions have nothing to do with how we look. We would like you to remember that.

-Too often mistaken for brattitude: While behaviors still need to be monitored, children with autism will act differently than typical children. They will behave in extremes and are usually delayed in maturing. That means an 8 year old may very well behave emotionally and socially like a 3 year old. These kids aren't being spoiled brats (in most cases), they are struggling to cope with the world around them.

-Autism affects the whole family: It takes a village to raise a child. That couldn't be more true with autism. Having to deal with an autistic child affects everyone in the household. Not only does the child need support, but the family does too in their own way. Siblings may get upset because they feel their autistic sibling gets away with more than they do. Adults may clash over support issues. It's not easy to balance an autistic household.

Finally, just two more. While I would like to post all of the awesome comments I got, I just don't have room.

-It's a manmade pandemic: I have to post this and call it to task. Remember what I said above? A pandemic is an epidemic of infectious disease covering large areas such as continents or world wide. So the comment is incorrect in the idea of a pandemic because autism is not contagious or infectious. It's not an infection. But manmade? That's entirely possible and even probable. Generations of exposure to major pollutants like lead, asbestos, chemicals, drugs, and yes, even mercury with varied environmental factors have damaged our gene pool (how could they not?). At this point, there is no single factor that causes autism, rather a collection of factors. So, did we do this to ourselves? Maybe.

-It's a gift not a burden: This comment struck me as important too. It shows that not everyone with autism in their lives thinks of it the same way. There are plenty of people who say "autistic and proud" and it doesn't slow them down much. They say they are fine in life and need no assistance or treatment. We do need to remember however, that this is not true for everyone. Not everyone feels gifted, is gifted, or can go without support. We need to respect each others feelings and realize not everyone is affected the same by autism. Also, just because you are doing awesome, doesn't mean everyone can do what you do. The fact of this demonstrates the autistic blindness to other peoples conditions that comes with being autistic. So please remember, not everyone feels gifted.

So, feel free to leave your own comments here about what you want people to know about autism. I had lots of great comments and I'm sorry I couldn't post them all.

And the bottom line, autistics are people too.

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