Monday, January 26, 2009

Dan and the Monster Autism

Action for Children has started an ad campaign portraying an autistic kid as being trapped inside a monster, then fighting his way free with their help. I just emailed the following reply:

"I am an autistic 19 year old. I am not a monster, nor am I trapped inside a monster. I'm just a unique person who has been misunderstood and abused by many others.

It's not my fault, or the fault of my autism, that other kids called me names, shoved me, etc. Nor was I bad when I did the only thing I could see to do, and lashed out at the bullies or ran away from school. That was better than when I shut down and lashed out at myself.

It's not my fault, or the fault of my autism, when my teachers insisted that I rearrange my mind to fit their curriculum. When I refused to obey them, hid under tables, or just stood there defiantly until they called my parents, I was advocating for myself. When I thought of myself as stupid, lost interest in things I used to like, and promised myself I wouldn't be 'bad' anymore, that's when I did something wrong, because I was hurting myself.

If no one else will defend your rights, you must defend them yourself. But some kids, like Dan, give in and accept the poisonous blame. They attack themselves, trying to defeat the monster inside. They learn that they're broken, and they must spend 'as long as it takes' to make themselves into worthwhile, valuable human beings. My parents told me that I was always a valuable human being, but many kids don't have parents who do that.

If you claim to be committed to helping children break through injustice, then do that. Don't tell kids they have to defeat the monster that is inside them, tell them they're OK and they must respect themselves. Don't tell them the way they were born, the way they are, is inherently broken, or else you're the injustice they need to break through."

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Blogger Jenny said...

Just wondering. do you know what it is like to not be able to express your feelings, wants, needs, discomforts? No. You express very clearly your feelings and thoughts. Therefore you have no idea what is like to be imprisoned by apraxia.

Maybe you shouldn't be so hard on parents for wanting to set their children from from apraxia (40% of children with autism are apraxic to the point of being non-verbal).

What we need to focus on is making sure that autism isn't proven as "genetic" so that we terminate these poor children before they ever get a chance to live outside the womb. Now that is what I call hate. Just my 0.02$

9:21 PM  
Blogger Sharon McDaid said...

Ettina, what a moving letter. I'm sure you'll get the same standard reply as everyone else, but please let me know if you hear differently. It would be even more shocking if the charity tries to brush off your personal experiences as they brushed off my concerns as a parent.
I've added your post to a list on The Voyage.

Jennie, you have been very disrespectful to Ettina. You have no idea of Ettina's struggles, abilities and difficulties. You don't need to educate her on what autism is. You don't need to make assumptions about her from reading a blog post (did you even read more than 1 post?)

Read a bit more; try Bev's post to parents and Abfh's post It's fine for you but....

While I protest prenatal screening, it's ridiculous to say that anyone needs to prove that autism isn't genetic as it clearly is.

1:52 AM  
Blogger Ettina said...

Dan wasn't described as having any trouble speaking. Supposedly he's a child with Asperger Syndrome, which is defined as 'autism with no speech delay'. So when they talk about a kid like that as 'trapped inside autism' they're not talking about apraxia. They're talking about the kinds of autistic traits I have, such as social difficulties, meltdowns, etc, because that's what AS kids have.

8:09 AM  
Blogger Andrea Shettle, MSW said...

I wonder if you knew that Action for Children has made another ad that parents with MS find almost as horrifying, except that it creates a poor image of parents who have MS instead of Autistic children.

The Facebook group focused on the MS parent ad is at

It might be useful for the Autistic community and the MS community to coordinate efforts in this. Both ads seem to be rooted in similar problems in that the sponsoring organization has apparently not done at all well at consulting the disability community in developing these ads.

3:29 PM  
Blogger Jenny said...

Ettina, may I suggest that you help explain a way that would be more "autism friendly" in dealing and teaching our children? You point out everything people are doing wrong, which is helpful. Please provide the other part, now. Do you have any ideas about how to love our children with autism better?

Should we let a child scream and kick and bite because they want to? I am confused about this perspective here.

11:50 AM  
Blogger Sharon McDaid said...

Jennie, do you often ask 19 year olds for parenting tips?

You're clued up enough to post a blog comment, perhaps you could figure out how to get the information you seek for yourself.

11:55 AM  
Anonymous Anonymous said...

i loved your letter.

7:26 AM  
Blogger Jenny said...

Sharon, I did not ask you. I am not asking for parenting advice. I am wanting to know how to relate to my daughter better. Please do not do to me what you so easily accuse me of doing. 2 wrongs do not make a right

12:34 PM  
Blogger Jenny said...

I forgot to apologize for both of my comments earlier, I wasn't thinking it all the way through. Please accept my humble apology. I took things the wrong way. I want to be a person who accepts people who are different. I hope that people will do that for my daughter, too.

Ok, I won't comment anymore from here on. Thank you Ettina for your point of view.

2:17 PM  
Blogger Andrea Shettle, MSW said...

Jennie asked, "Should we let a child scream and kick and bite because they want to? I am confused about this perspective here."

I'm not autistic, and I'm not a parent, but based on reading several different blogs by Autistic authors, including Ettina (and also several others, such as etc):

No, Autistic people aren't trying to suggest that you just allow autistic children to do what they want.

Rather, instead of trying to get them to control behavior that they may not be ABLE to control (or would find very difficult), find out what's TRIGGERING the "melt down." Frequently (not always, but frequently) what can LOOK like a "tantrum" in an autistic person may actually be a "melt down" triggered by overload. For example, a hyperacustic person (a person who hears a lot more sharply than most people) may be more easily overwhelmed by noises other people would barely notice. A person who has hyper sensitive tactile sense may be driven bonkers by an itchy tag in their shirt. Lights and colors and crowds can all be overwhelming.

If you figure out the trigger, then you can plan around them. Buy more comfortable clothing without tags. Minimize exposure to crowds, etc.

Again, I'm no expert in autism. I'm just summing up what I've read in many different blogs by people who have "been there" (including a few parents of autistic children and adults). The more you browse different blogs by Autistic bloggers (and parents), I think the more you will see that kind of advice given.

Of course, it can often be a challenge just to identify a trigger, and then to plan around it. And also, sometimes even autistic children do throw ordinary tantrums in the same way that non-autistic children do.

2:11 PM  

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