Saturday, February 11, 2006

Actually, it's autism

We have two sons. One is 16, the other is 7. Both have autism. From what we've learned so far, most likely somewhere in my genetic coding, there's a defect in part of the "X" chromosome - the part of the X that's missing on dad's contribution. Which why our daughter shows no autistic tendencies. The autism was kind of dormant, until the boys were vaccinated here. The vaccinations used had mercury as a preservative, and something got messed up.

Our older guy, Trevor, has Asperger's Syndrome, and the younger one, Connor, is language-delayed. If you could merge both of them together, you'd fill developmental holes on either one. It's weird.

Kids with autism always have social difficulties. They don't learn incidentally from just watching & listening to other people around them (which is how typical people learn how to behave). So, instead you have to teach each thing to them, and then help them adapt what they've learned to other situations. If you don't help with the adapting part, they don't transfer their knowledge & learn to generalize to other people & places.

Autistic kids are also very literal learners. Most don't understand metaphors - if you say, "Gosh, it's raining cats & dogs outside!" They'll go and look for cats & dogs falling from the sky. Obviously you'd expect that from a 3-year-old, but not a 12 year old.

Asperger's kids are kind of described as "Little Einsteins." First off, they generally are extremely well-read, and can converse ad nauseum about their particular interest. They don't engage in conversation though, nearly as much as they lecture on their favorite topic. Secondly, they immerse themselves so much in their favorite thing to the exclusion of everything else (eating, bathing, other people, etc.). They work well in little cubicles :) So, with an Asperger's kid, you want to aim them toward something they can actually use as a career - ours is learning CAD programming and 3D animation.

The language delay is a bit harder. Connor learns a lot of language from his favorite videotapes & movies. He'll just change the lines a bit to fit his situation (which is a good thing!!). So a couple of years back, when Finding Nemo was his favorite flick, he'd call me as Dory calls the whale over - only instead of "fella" he put in "mommy." ("Come here, little Mommy.")

Temple Grandin is a woman who has overcome most of her autism. She described when she was young why she didn't pick up language easily. She thought adults were speaking "adult language" so she didn't even listen. It was only when she was being spoken to directly that she paid attention. That would make it pretty hard to learn language, wouldn't it?

Connor can read & decode written words pretty well, but he doesn't always comprehend what he's reading. He reads because he likes the alphabet and how certain words sound. He's not trying to use reading to gain information at all.

So - between the two boys, we're working harder with Connor. Trevor needs a lot of contact with his teachers to explain his behavior at times. Connor needs more support both at school & at home.

An example of Trevor's take on things: When he was in 5th grade, his class worked for 3 weeks on a bird report. When it came time to turn in the reports, the teacher sent a kid around to collect them. The kid missed Trevor. Trevor put the report back in his desk. When I asked him why he didn't turn in the report, he said the kid didn't get it from him. When I asked why didn't he take it to the teacher, he just stared blankly at me. He had put the report back where it had been okay to put it before. The importance of turning it in was completely lost on him. He had gotten it done, so it was done.

With both of our sons, it's really important that people working with them are aware they are not doing things they do on purpose. They do their weird little things because that's how they have learned to act in that situation. The trick is teaching them the appropriate way to act when their method isn't the right way. And you really have to go step-by-step. Role play. Change circumstances, etc. until you know they have a handle on the main goal.

It sounds a little overwhelming, but you do get to start off slow - they grow with you. And you learn to advocate for your kids & you lean on the supports your community provides. I have a couple of autism consultants I can call on to talk to teachers who don't want to change their teaching methods to accomodate my boys. They both have Individualized Education Plans, and those serve as a legal document to ensure their goals are being met.

And I do Girl Scouts with my daughter so our lives don't revolve around her brothers all the time - because it's easy to fall into that. I do another club for me, but I'll post more on that later.



Robert van de Walle said...

Wow, Tina.

I was just reading in a magazine, Mothering I think it's called, about all the techniques parents are using to help their autistic children. From chelation therapy to draw out mercury to the kind of intensive teaching/learning you are doing, parents are discovering all sorts of things to draw out the best in their children. ANd good for you, guarding against your lives revolving around the boy's "condition."

Keep up the amazing effort.

Tina said...

I'd like to read that, Bob.

I've heard some conflicting info on the chelation, so I'm a bit hesitant to try it. I've heard of kids not making it through the process (ie. dying) so I would rather wait until there is a better process.

The intensive therapy I would want for Connor is ABA (Applied Behavioral Analysis) and they've had wonderful results. I have been to two weekend conferences on it, and if it weren't so dang expensive, Connor would have been doing it a long time ago. I have learned some of the techniques, but I'm not really trained in it other than an overview of how it works.

We are considering going ahead & paying out of pocket for it this summer. Connor has met a lot of the goals already, so it may be possible to take him through the receptive & expressive language parts on our own. We would still need to be trained on how to do it and pay for an ABA consultant. We may have to take a 2nd out on the house to pay for it, but if it's the difference between needing life-long care vs. independence - how can you put a price on that?

The longer we wait, the harder it is to help him overcome the hard wiring in the brain - so it's almost to the point of no return. He *is* doing a glyconutritional supplement which helps enormously with his behavior and ability to focus, so I think we've extended his window beyond the typical timeframe.

I'll have to see if I can find that article. I love to read anything about autism, just to see if there's something new, or something that confirms what we're doing already.

Thanks for the info!

Robert van de Walle said...

Hey: I don't have your email address anymore. Write my through mine (on my blog)

I'll track down that article.

Tina said...

I think I found it on

Seemed to be a pretty good article. I'll have to read it in depth when I have a minute :)