Wednesday, February 13, 2013

Blogging at The Autism Channel today..

Kim and I wrote our first joint blog lady post over at The Autism Channel blog today.  It discusses some very important issues in the autism community.  I hope that you go on over and give it a look.  Thanks.

6 comments:

Looking for Blue Sky said...

It was lovely and reassuring and comforting to read such a balanced and non-judgemental post about aggression. The other part of the story that I rarely read about is women who leave abusive partners, only to experience similar behaviour later from their children on the spectrum..

Stephanie Allen Crist said...

Kathleen,

I'm back!

One of the ways I "get around" the taboo, or try to, is to talk about "behaviors" and how behaviors are communication. With both Alex and Ben, communication is very, very difficult and very, very limited. Often, the only way they can communicate is by what they do.

Not all behaviors or communicative behaviors are aggressive, but in my personal experience aggressive behaviors are a form of communication--if nothing else, they tell us that something is wrong. When you figure out what the behavior means and correct the problem, you also alleviate or reduce the behaviors.

Of course, when behavior is your primary means of communication, then behaviors often mean more than one thing.

It's not easy, especially when you have too little support or, worse, when you have what I like to call anti-support, like when you have to fight the school district over the rather simple idea that behavior=communication.

kathleen said...

@bluesky-That would be an interesting post..I will have to look and see if anything on the subject has been written..:)

@Stephanie-absolutely it is a form of communication..figuring out exactly what is being communicated can at times be very difficult. However, I think that aggression, self injury-etc. has to be addressed-has to be. So glad you are back! :)

Stephanie Allen Crist said...

I agree that it has to be addressed--versus, say, simply ignoring it.

But...

Thus far, in my experience, there really are very few solutions. It's a process. There's definitely no quick fix.

Added to the stress of the aggression itself, trying to find the necessary solution(s), and trying to understand it--which is all very much enough to deal with--there's also the stress of outsiders looking in and judging, saying, "Well, why haven't you fixed this yet?"

There aren't enough resources. There aren't enough answers. Instead of getting help, we get judged and that doesn't help anybody.

So, yes, it has to be addressed, but I fear it will have to be researched and supported at a much higher level before many families who don't find the known answers to be effective will be able to resolve the aggression issues they face.

kathleen said...

@Stephanie-absolutely! It is a process..and no there aren't enough resources. And judgement-*sigh* it is awful..people see one aspect of your child-one thing-and they make assumptions-that really do nothing but harm. What I meant is that when a child is so self injurious-where their health and or life is endangered by their self injurious behavior the need for help is immediate. We don't have supports for that..instead we condemn and judge and make all kinds of assumptions about the person..the parents..it is very troubling to me..

Stephanie Allen Crist said...

Alex used to bite his wrist. In fact, he still does, just not so bad.

The only "support" we were offered, despite our efforts, was a wrist guard. I tried to explain to them that he wouldn't wear it--at the time he wouldn't even wear gloves to protect his fingers from the cold. They said, "Well, that's a sensory problem."

It's like, "Yes, I know that, and biting his wrist is a behavior. You say you do with behaviors, so...?"

The irony is that once Alex's sensory needs were better met, the self-injurious behaviors reduced dramatically--the behavior being a result of stress he had no other way to deal with.

The problem is that we still don't have an effective means to help him understand/cope with unavoidable stress.