Thursday, February 15, 2007

Example of an Autism Misunderstanding

This morning my Miss M experienced a classic autism misunderstanding. It hurt her. It made her angry. It frustrated her. Oh, and it was MY fault.

Many traditional (read most) autism "specialists" including most doctors think of autism as a behavioral disorder. That's why it has a 299.0 behavioral insurance code and gets NO insurance coverage. Anyway, docs and teachers and specialists tend to want to use conditioning (negative or positive reinforcement) to work with our kids. Sometimes that's absolutely the right thing to do. When the "behavior" is really behavioral. Sometimes,with kids who can't speak, the behavior is nothing of the sort. It's a child saying "I am in pain!" Example?

This morning, in 20 degree icy weather, Miss M kept trying to kick off her snow boots. Not cool if you'll pardon the pun. Did I yell at her? Well, uh, actually I did. "Keep your boots on!" She kept trying to kick them off. So I sat her down and pulled of the boot. There, at the toe, was the huge wad of paper stuffing. I had forgotten to pull it out. So she was in PAIN and uncomfortable and she told me the only way she knew how. By taking off the boot. This is so damn common in our kids. Even the ones who can speak. Miss M can speak in short sentences. But it didn't occur to her to say to me "Help please. Boo boo." How terrible did that make both of us feel?

Kids on the spectrum often experience pain that the old fashioned, not up to speed autism treatment protocol assumes is just bad behavior. They suggest high powered drugs to calm (sedate) the kids. There's a perk eh? They use negative/aversive therapy. They are idiots. Can you imagine telling a cancer patient who is in stomach pain "Sit up straight and I'll give you a Skittle!" That is just how preposterous many autism schools and professionals think.

By the way, Miss M. said to me after I pulled out the wad of paper: "All better." If only I could make it so.

20 comments:

Tena said...

"By the way, Miss M. said to me after I pulled out the wad of paper: "All better." If only I could make it so."

This breaks my heart.
Today my therapy dog, Cami, and I are off to the Autism Academy where there's a new student. (We work with a small group of kids ages 3-6.) I've become so accustomed to the "regulars" that this new one will be an interesting challenge, from what I understand. I'm only there for an hour but you do this everyday...
Kudos to you, Kim.

KRStagliano said...

Tena, if see teachers punishing behavior PLEASE ask them , could he be in pain? Most Autism Schools are still straight ABA - and many make you sign papers you won't go on the diet or try biomed including a BIG one in New England... Question them! For my Mia, for your little guy. Thanks. KIM

Matt-Man said...

I would like to use some aversive actions on that block head Rep. Joe Barton...Bittersweet, but reading "All Better" did make me smile. Cheers Kim...

Tena said...

Kim, so far I have seen the teachers give the kids only patient, positive reinforcement. (Of course, I'm not there all day.)I've seen great results, wonderful changes in the behavior and attitude of the kids.

I'm a volunteer. When I joined, I had to sign a paper stating that if I ever was suspicious of any kind of abuse, I had to report it no matter what.

BTW, my dog is a beautiful, gentle German shepherd. The kids love her. I'm told that the child with the "talker" does nothing but talk about the dog all afternoon. She started out being very afraid of Cami.

Holly Kennedy said...

Kim, your Miss M sounds adorable. "All better." What a beautiful way to end your post. My heart just melted for you. Have a good day in your corner of the world.

Holly Kennedy said...

I hope you don't mind, Kim, but I linked to your blog on mine.
All best :)

Another Autism Mom said...

Kim, if an autistic child has problems with allergies, immune suppression or GI issues, the insurance WILL cover the treatment as long as you're using a pediatrician, specialist and lab under your health plan. I know there's a lot of autism parents that go straight to the DAN doctors, but there ARE regular pediatricians that will run all the tests you ask for and will help you treat your child for biomedical issues. It's a pity that so many parents think they have to pay for everything out of their own pocket, and that only DAN doctors are reliable. Of course if you believe chelation is the best option, you won't have it covered by insurance. But I'm yet to see any autistic kid cured by chelation, HBOT and supplements, but I'd change my opinion if I read a peer-reviewed study proving that those methods cure autism.

As for the behavioral treatments, my child does ABA (funded by school district and State), and the results are amazing. There's absolutely no aversives, no negative reinforcements nowadays. Tantrums or wrong responses are only dealt with a quick and gentle no, and a redirection to an appropriate activity or response. The parents have total control and say over the types of reinforcements given to the child (food, toys, people games). If your child does well on the program, she WILL be able to tell you one day: "Mommy, my foot hurts." If you're not happy with ABA there's many other methods to improve communication and joint attention for kids in the autism spectrum. A lot of them are funded by the school, others only require some parent training and then can be done by parents at home.

Anonymous said...

Amen to the other autism mom...ABA wouldn't teach the child to ignore the pain in exchange for a Skittle...it would teach her to communicate, verbally or non-verbally, in a manner more appropriate than simply removing her shoe. That cancer analogy though was so off-base it was almost funny...

mcewen said...

I am likewise guilty of the same mistakes. Where a few simple words would clarify the problem instead they take action themselves, but that's the non verbal for you!
There again, how much better to have that proactive approach rather than a meltdown - good for her.
Best wishes

The Wandering Author said...

"in a manner more appropriate than simply removing her shoe"

If there's something in my shoe, and it hurts, I pull the thing off too. How else am I supposed to get whatever is hurting me out? So where's the sense in teaching anyone removing your shoe because there's something in there hurting your foot is "inappropriate"? Okay, in Miss M's case it might have been better if she could explain and let you handle it, but I think treating an action that is a direct attempt to fix the problem as "inappropriate" really is inappropriate.

Also, if you can't easily communicate, you would naturally do whatever you could to make your point. I can understand no one can always figure out what is wrong immediately, but to distract someone in that situation without making an effort to figure out why they're doing whatever it is seems cruel, heartless, and arrogant. (Arrogant, to assume that because you don't understand the reason, there must not be a good reason.)

It reminds me of the time I was ten years old, and the doctor was pulling wax out of my ears. I, in turn, was screaming, crying, and telling him, over and over, that he was hurting me. He just kept calling me a crybaby. When he got done, my ear itched, and I put my hand up to scratch it - it came away covered in blood, he'd pulled so many hairs in there... And he turned to my mother and said, calmly, "How was I supposed to know he had hairs in there?" I told him, maybe not that I had hairs in there, but that he was hurting me, and in his arrogance he ignored me. And he never even apologized to me.

I can only imagine what it must be like for someone who can't even express themselves so easily. Perhaps anyone who wants to treat autistic people this way ought to have to first spend a year where they are required to behave "appropriately" for those who have far different standards than their own, and who don't speak the same language. That might teach them something...

Anonymous said...

but I think treating an action that is a direct attempt to fix the problem as "inappropriate" really is inappropriate.



By your definition, a child peeing on the sidewalk can be seen as "an action that is a direct attempt to fix the problem".

The Wandering Author said...

"Anonymous", there are flaws in your argument, but I'm not even going to bother to address them. I'll simply point out that you don't even have the courage to let people find their way back to your blog. Anyone who is that ashamed of their own opinions isn't worth taking seriously.

That is the last I'll say on the subject here: I don't want to start a fight on someone else's blog. If you have more to say, you can find my blog easily enough.

Michelle O'Neil said...

Oh Kim!

I hear you. My child is very verbal, but in her moments of frustration her ability to reason and work it through go out the window. Sometime it's only after the meltdown that we get to the heart of the matter of what was actually wrong.

You are a great mom with a very challenging job and you do figure it out, every time.

Your girls are blessed to have you as their mother.

Anonymous said...

Wandering, why don't you do us all the courtesy of detailing your expertise in the area of behavioral modification of the autistic population?

Please.

I'm sure it will be about as captivating as the other stuff you've been writing on the internet...

The Wandering Author said...

"That is the last I'll say on the subject here: I don't want to start a fight on someone else's blog. If you have more to say, you can find my blog easily enough."

Anonymous said...

"That is the last I'll say on the subject here: I don't want to start a fight on someone else's blog. If you have more to say, you can find my blog easily enough"


But you've already started the fight, "author."

Why not do the honorable thing and tell us about your expertise in the area of behavior modification programs for the autistic population?

Humor us. We're dying to be simultaneously informed and entertained by your musings.

Laura said...

Jeez, Kim, George gets kinda cranky, doesn't he? He's kinda sarcastic, too. That always works so well on a blog!

Wandering's story reminded me of a dental situation I had as a child, that involved lots of pain and my screaming as the dentist pulled out some stitches my skin had grown over without numbing me before hand, and the dentist asking my mom if she could "shut me up". Ahh, good times.

I'm very impressed with Miss M's handling of the situation! Get it done, and have something nice to say about it afterwards!

Anonymous said...

What do you think about ABA, Laura? Do you think ABA could teach Miss M. to use some type of communication (verbal or nonverbal) to express herself?

Anonymous said...

I know the BIG one(autism school) in New England you are talking about. My child attended there (unfortunately). Taking a child's pain or discomfort into consideration is the least of their concern at that place!!! So many horror stories regarding that place concerning diets and this school's refusal to admit that children do have G/I issues and they are in pain rather than just being "behavioral." Oh, and if you question them at this school they immediately threaten to kick your child out. What a nightmare!

Laura said...

What do I think of ABA? Well, it's one of the treatments we use with my son, but that's because it's 80% covered by insurance and we can afford the 20% not covered. If we didn't have great insurance, I don't know if we'd do ABA, as it's very expensive. (That and the many other therapies we've tried because they are covered by insurance.) I don't really know if ABA, the speech therapy, the occupational therapy, the cranial-sacral therapy, the diet, or the many supplements make the most difference in my son's behavior. (Not to mention the allergy treatments and the Auditory Integration Therapy we've done in the past). Together, they all help, and I don't want to risk getting rid of anything at this point! The ABA center we go to stops at age 7, so I suppose I'll find out how important it is in another year and a half. I don't know Miss M., so I have no idea if ABA would help her, but if it were a program like the one mentioned that precludes diet and supplements, I don't think it would help her stomach, and it's hard to work through pain. There are lots of kids who do well with ABA, but then there are lots who don't do well with ABA, but make lots of progress with RDI or Floortime. It all depends on the kid!