Monday, March 1, 2010

Do aspies understand autism?

If you have a child with autism, you know how much trouble it can be to go out in public with your children. It isn't just that your child can misbehave or have meltdowns (as can any child) but rather the constant looks that you get as your child stims or does other things that are out of the ordinary.  Even on the good days, it can be very wearing to have your parenting skills constantly called into question by looks and words.

Then there are the days that aren't so good. Days where, despite your (and your child's) best efforts, things don't go as well as you would like. If you are lucky, you will find yourself in a situation that you can exit quickly. If you are not lucky, well, it can get very ugly.

But as I said, if you have a child who has autism, you already know and understand this very well. And chances are, if you see another child doing something strange in public, you are not as quick to judge.

Unfortunately, most people are not quite so understanding. There have been many examples latest such as mothers getting kicked off planes or being ordered out of restaurants that demonstrate that even moderate behaviors are not well tolerated by the general public.

These are not isolated incidents. But more importantly, if you look at the sort of comments that these stories gather, they are mostly of the "bad parent" sort where the children's misbehavior is not blamed on the autism but rather is blamed on bad parenting skills.

But such is life when your children have autism. Most people are simply not going to be able to understand what it is like until they have experienced autism first hand. The good (and bad) news is that, at the rate autism is growing, there is going to be a lot of understanding going around in the decades to come.

What is completed unexpected, at least to me, is when the people who should know better don't get the point and join the general chorus in blaming the parents. I am talked about the "aspies" who claim to have a form of autism and yet seem to be unable to understand the difficulties that it can cause.

Take for example this thread on wrong planet where the poster is complaining about the actions of a father -
Some Dad came back with his son, and asked if we could refill his cup of ice cream cause he dropped it.
Now, actually we have to, or else they'll complain, but we gotta push the illusion that we won't, or they'll all be irresponsible...at least more so than they already are.
Anyway, the guy said "sorry about that; my son's Autistic".
Right there...I wanted to smack both him and his son. His son looked to be about 12 years old; and no, for those wondering, he was in no way low functioning; he was at the functioning level I was at age 12; definitely HFA.
Now, I know we have lousy coordination skills, but geez....he couldn't hold a freakin' cup of ice cream? And he had to use Autism as the reason for it?
I found that very insulting; and no, I didn't say "so am I"..it wouldn't have been professional. 
Now, does any parent out there have a problem picturing what happened?

The child knocked over his ice cream cone - most likely due to some restricted pattern that they do - and the father, who has had to endure countless dirty looks, decides to skip all of the verbal jabs and says flat out, "sorry about that, my son's autistic".

Most people on the other end of that comment will realize that the father is basically acknowledging that he doesn't want to be asking for another ice cream cone and the situation isn't what he would like. Most people would realize that this is a short way of saying that there are other issues here and that he is doing the best he can to deal with a bad situation.

If you have children with autism you know how these things happen.

My children are (almost) always well behaved in public. But if we run across a store that sells rubber ducks or flowers or if a cup of water gets spilled, look out, it can get ugly (if we ever go into a flower shop that sells rubber ducks and a bucket of water spills on the floor the world just might come to an end).

We know that our children don't want to act out in this way but that they can't always help it. So we go out of our way to avoid these situations. But sometimes, things happen that are out of our control and then there are issues. This is where it would be nice for there to be some acceptance and understanding that there are are issues that we are trying to work through - issues that are directly caused by autism.

But this gentleman on wrong planet, an adult who says he has a form of autism, he has no understanding nor any acceptance. He takes one look at the situation and judges that the problem isn't the child's autism. He seems to feel that autism is being unfairly blamed to cover the father's poor parenting skills. And for that matter, most of the other people commenting on the thread seem to feel the same way. There are a few voices of reason, but for the most part the comments are hostile to the father.

Where is the understanding of the problems that autism can cause? Where is the acceptance?

I am used to "typical" people jumping to these sorts of conclusion as they simply don't understand but I would have thought that "aspies" would know better.

I guess I was wrong.

5 comments:

  1. Hey MJ,

    Sounds like sometimes people don't understand the situation even if they're in it. You've definitely opened my eyes to things I never considered before.

    I found your blog while searching for unique and helpful content on autism.  I think you could benefit from sharing your personal story to those seeking connection to other people who are in similar situations regarding autism. Wellsphere's HealthBlogger Network (HBN) is comprised of over 3,000 of bloggers who motivate and support each other through 150 communities. 

    For more information about joining, please visit http://www.wellsphere.com/health-blogger or email me at hua [at] wellsphere [dot] com.

    Best,
    Hua
    Director of Blogger Networks

    ReplyDelete
  2. MJ - Word to the wise, don't fall for that Hua character, s/he's been making that sort of flattering comment all over the web. Smells like spam to me.

    Now, re your post.

    You've latched onto a veritable treasure trove of things/people to criticize with posters to Wrong Planet. You have basically a bunch of pimple-faced adolescents who may or may not be diagnosable with anything, and who have never really heard of or been taught any "principles of neurodiversity". There's really no "leadership" there, no moderation of foolish statements. It's a message board for lonely people, mostly teenagers.

    But you want to think of them as representative of "neurodiversity", and fight such ideas on equal terms. That's kinda like big bad Mike Tyson taking on a teenaged Woody Allen.

    Putting up quotes of this person is pretty much the same as setting up a strawman, and then setting it on fire. I may be wrong, but I think you're smart enough to know that's exactly what you're doing.

    ReplyDelete
  3. Clay,

    I think you are missing one of the main themes of what I am saying. These are not the "pimple-faced adolescents" but rather young adults in their twenties (or so they claim) who have been inspired by the ND movement to claim they have autism and that it makes them special.

    These are young adults have latched onto autism as their identity because what they heard from "your side" is that if you are socially awkward and have a few minor problems then you too could have autism. But that's ok, autism is a great thing to have, after all, and some of the most famous people in history had it too. And then these people go out and make stupid comments like this gentleman or they go attack some parents who are attempting to help their children on message board somewhere. If this were politics, I would say that young adults like this are the base on the ND movement.

    You may say that they haven't been taught the "principles of neurodiversity" but they sure think that they have. You can say that they don't talk for the ND movement but then there seem to be a huge number of people who think that they do. Take Carley for example. Or Nick Dubin, he wrote a lengthy article entirely about ND and named Carley as a shinning example of the ND movement. Is he wrong? Is there a master personal file for every person who is authorized to speak for ND? (if so, could I have a copy?)

    Whether you happen to agree with what these people are saying or not, they are speaking for ND. The question then becomes whether the movement is responsible for what people do its name. I think the answer is yes - especially if it does not act decisively (and publicly) to correct the "inappropriate" comments.

    You reap what you sow.

    I did not set up any strawmen but I certainly do admit that I intended to light a fire. These ideas are harmful to children with autism and this issue is going to play a very large role in my children's lives, so I think it is important.

    I could write a rousing manifesto about why making autism your identity while denying the problems that it can cause is wrong, but I think people get the point more from concrete examples, don't you?

    BTW, in your example am I Mike "I like ears" Tyson or Woody "I have big glasses" Allen? I don't think I have a taste for ears but I don't wear glasses either so I am confused.

    ReplyDelete
  4. sorry hun but

    "The child knocked over his ice cream cone - most likely due to some restricted pattern that they do - and the father, who has had to endure countless dirty looks, decides to skip all of the verbal jabs and says flat out, "sorry about that, my son's autistic".

    Most people on the other end of that comment will realize that the father is basically acknowledging that he doesn't want to be asking for another ice cream cone and the situation isn't what he would like. Most people would realize that this is a short way of saying that there are other issues here and that he is doing the best he can to deal with a bad situation."

    Kids are Kids, autistic or not ANY kid is going to knock stuff over and have falls. do.. you know.. the kid thing.

    "Most people would realize that this is a short way of saying that there are other issues here and that he is doing the best he can to deal with a bad situation."

    Congrats, other parents have to put up with their kids just being kids in that wonderful diverse and difficult way of children, seems however that guy has an excuse they cant use.. he can say his kids autistic, others are left with 'eh, kids ya know?'.

    Welcome to the internet, guy on wrongplanet expressed his annoyance over something, you've expressed yours, before you take it upon yourself to speak for/about an entire section of society, do a poll or something ;)

    ReplyDelete