Monday, December 6, 2010

Understanding Autism for Dummies

How do you tell people your child has autism? How do you tell people you have autism?

This is one of the questions that was presented when I asked friends on Facebook what readers want to know about autism. It's a very good question. In looking at that question there is a reality we need to take into consideration.

Most strangers just don't care. They only care about what irritates them as they move around in public.

I know that seems harsh, but it's true. While we want the general public to understand our child, it really only matters for those who will be working with him or her directly. It counts for those who are supposed to care about our children, be teaching them or spending copious amounts of time with them. That is where to start in telling anyone that our kids have autism.

Now, in continuing to answer this question I want to tell you about a book I recently purchased on Amazon for about 15 bucks (including shipping) called, Understanding Autism for Dummies. You may already know of the "for dummies" series. It's excellent in "dumbing down" technical information to make it easy for just about anyone to understand. Let me tell you about this book by Stephen M. Shore EdD and Linda G Rastelli MA with foreward by Temple Grandin... it's a GOOD book!

I will go more into the makings of this book that you should go buy RIGHT NOW in another posting, but for now I want to go over chapter 17. It's about Ten ways to respond to questions or comments that you will deal with and may recognize. Please note, I am going to quote the book somewhat directly with proper credit intended to the authors. I am going to do this in the format of the comment, followed by why it's inappropriate (it's problem) and responses the book suggests. You should get the book for the full message.

Comment: What's his special talent?
Problem: Reduces your child or you to the status of a circus performer or social oddity (though the question is innocent enough and not usually intended to be rude).
Responses: "Some autistic children have special talents and some don't, just like the rest of us. What's your special talent?"
"I don't know, but I can tie my tongue into a knot."
"We don't think of him that way. We think everything he does shows talent, considering how hard he has to work to overcome his disability."

Comment: Why can't you control your kid?
Problem: Assumes you are just a bad parent.
You can tell this person that your child has autism if you like. I have found, in some communities, people are getting more understanding. They lose the glare, nod and walk away. But some can't be helped. The book doesn't really give responses in this, rather advice. Don't let these people get to you. Yeah, easier said than done, but you have to remind yourself that this person simply doesn't KNOW. Some things I have said when someone gets invasive on the point:

"Sorry, but standing there staring is rude too."
"Thanks for your input, have a nice day."

Then I ignore them.

Comment: Asperger snausberger, he looks fine, he just needs a better attitude.
Problem: Dismissal of his condition and what I like to call "assumption of brathood".
This falls in with the above and the book makes a suggestion here. You can carry pamphlets on autism education or a card that simply has the name of a website such as The follows the same train of thought I have after that. You can only educate the open minded. Pass them by after that. You have your hands full enough without them.

Comment: Who did he inherit it from?
Problem: Implies that someone is to blame.
You tell them that genetic research has found that there are hereditary factors but they are very hard to be sure of. Or, you can go for the humorous angle and claim responsibility with pride. If your spouse is with you, the two of you can both claim responsibility and maybe even mock argue the situation a little. The truth is, that while this is ignorant (thought innocent), it really has little to do with how things have to be handled or how you and your child have to live with it.

Comment: Why should your child get special treatment?
Problem: Dismissive.
The book explains that you and your child have rights to proper support where needed (such as in school) and it's just as simple as that. Most people in public don't seem to hit on this one, but that doesn't mean you won't come across this very rude person. Refer them to the Americans with Disabilities Act and the idea of general human decency. Then walk away.

Comment: Are you kidnapping that child?
Problem: Accusatory and dangerous to you in public.
You have to handle this one gently. The more you get defensive and offended the more others will judge you in a negative light. Use the power of education here and explain the situation as best you can. Most people who are truly concerned and security personnel will understand and back off. Sometimes others who are nearby who also know autism will chime in and help you. This has happened to me personally.

Comment: (sort of) The "Bad Parent" glare.
Problem: Accusatory without words and very uncomfortable.
Remember what I said above. You can also say, "Excuse me? Can I help you?" and draw attention to their own rudeness. Be sickening sweet about it too. Be nice. It shows all others around the difference in public behaviors.

Comment: Is she/he still in their own world?
Problem: Assumes that all autistics are in the same box.
The fact is that we are so aware of our world around us that it can be painful. As the book says, imagine having to go through your day able to hear (loudly) the ticking of every clock in the house, or being driven to distraction by the crinkling of a plastic bag someone is shoving under the sink (from even the farthest room in the house). Imagine not being able to filter out the input your brain is trying to take in. There are a couple of responses suggested for this. Here is the more bold approach (even the book says this about it so use with care)
(Staring blankly say:) "Who else's world would she be in? I mean, really. It's not like they beam us all off the planet at age 22 is it? If they did, I missed my flight, darn."
The second is a longer winded approach but suggests that you basically explain that autistic people tune out as a defense mechanism against a world that is too bright, too loud and full of innuendo that's hard to understand. Inform that such a question is a good way to annoy an autistic person. They understand more than most people realize.

Comment: They grow out of it, don't they?
Problem: Assumes that it's just a phase and is dismissive.
This person needs to know that autism is with us for the rest of our lives. I have personally told people that my son will grow out of phases that they see and be able to live life to break assumptions that he will always be the way they see him now. The fact is, autistic people grow and go through phases like anyone else. They start as babies, children and then make it to adulthood.

Comment: But she doesn't look autistic.
Problem: Truly ignorant and dismissive. Assumes that there is a special "look" to autism like a missing arm or leg.
The defending information is that autistic people look just like everyone else. Autism is a biological disorder in the brain. It may affect some aspects of how the body reacts, but does not change physical features. Also, for those who mention Rain man or some such thing, it should be mentioned that not everyone has that effect. If they do, they still "look" like everyone else.

So there are some tips from the book: Understanding Autism for Dummies and I strongly suggest giving it a read! There are lots of ways to respond to the ignorance of others, you can be quaint and educative or slightly sarcastic and have fun. The point is not to let them get you down and keep you from living a good life.


LisaMHale said...

I want to borrow this book from you when you are done. Great column, Dave.

liz lips said...

thank you for this

Thewildeman2 said...

Thank you Lisa, and you are very welcome, Liz.