Wednesday, June 29, 2005

Not Otherwise Specified

Hi, all! This is my first post. I have been meaning to post for such a long, long time, but things have been going very well with my son, and I really haven't felt like even thinking back on how unbelievably hard our lives have been. Up until now. And lately. Like, the past year. The past year has been amazing and so very easy.

See, my son, R, is four-and-a-half and he is autistic. He has PDD-NOS to be exact. That stands for Pervasive Developmental Disorder, Not Otherwise Specified, and is included in DSM-IV for cases where there is marked impairment of social interaction, communication, and/or stereotyped behavior patterns or interest, but when full features for autism or another explicitly defined PDD are not met. He is just now starting to speak, and he is pretty behind socially, as well. R is very, very affectionate, sweet, and even-tempered. I cannot believe how sweet and even-tempered he is considering that he hasn't been able to communicate with us verbally, and there really is only so much a person can pantomime. If it were me, I would be surly.

Okay, so, I was reading something online, in a debate forum on a mommy board, and out of nowhere someone stepped up and mentioned meeting a woman with an autistic child. This someone, I'll call her B, seemed to feel superior to this woman because the woman hadn't heard about the gluten-free diet yet. Her autistic son just turned three and was recently diagnosed. B stated that she couldn't believe how like a deer in headlights the woman was, and that the woman didn't even know to change her son's diet--B's words: "...that she would rather keep her son imprisoned in his own mind and unable to communicate than to feed him differently."

I became irrationally angry at this point and went a little berserk. And after I typed through my irrationality, I thought it might make a decent post:

Continue reading...
I would like to say that not every person with autism is the same. Not all are imprisoned in their own minds, by any stretch, and it is insulting to the n-th degree to say as much.

That poor deer in the headlights woman *is* a deer in the headlights. Knowing when your child is three is an amazing bit of parenting in and of itself. If she hasn't yet heard of the gluten-free diet, she will.. And secondly, it is unbelievably offensive to think you know more about autism than that woman, or anyone for that matter. Just because you know about the highly publicized, largely ineffective diet certainly doesn't mean you know autism.

Could you help her child when he is melting down? Do you know his stims? Can you figure out what he wants to eat, as he is incapable of telling you? Do you know which door to use to enter the store so that he doesn't see a fountain or an escalator or those spinny garden decorations, any of which will throw him headlong into a stim that will inevitably end in a meltdown?

Do you know if he hates itchy tags or loud noises or crowded or cramped spaces? Your laundry detergent, your vacuum cleaner, your blender....does he need to watch water coming out of a faucet for hours? Will he want you to rewind the same 4 seconds of television for fifty minutes? Does he hate hats, sandals, jello, mud, dogs, cats, birds, garages, forks, spoons, and only drink out of the blue and green cup with the handles?

Stuff like this has made up 1/1,000,000 of my day, every day, for years.

So forgive her if she hasn't heard about the "special" diet that will free her son from the prison of his own mind.



Anonymous mika Denny said...

Bravo!!! I got chills!!!

And amazing insight into what Autism moms deal with... I am truly amazed... Did the lady reply back to your post?

11:56 PM  
Blogger trisha said...

No, not yet! Thank you very much!

it's funny, I feel like I really need to get back into my post, here, and flesh it out more. I think it could really be quite good. You know, with more details, more that.

Again, thanks a million. I have been really nervous about posting here. I feel better now.

12:23 AM  
Blogger Sarahlynn said...

Freaking awesome!!! (And, it's great to see you here.)

1:25 AM  
Blogger Sarahlynn said...

I'd just like to add that I've studiously avoided reading all the stuff about the special diets for people with Down syndrome. Not everyone copes the same way, and not all of us want to subject ourselves to rigid diets and food preparation guidelines that have no scientific evidence of being effective.

Also, I get *so mad* at the speculators who talk about how Down syndrome is caused by a lack of folic acid in the mother's diet. Baloney.

1) Down syndrome is caused by an extra 21st chromosome. If indeed the "fault" was mine and not my husband's, the faulty egg was created before I was even born. If the faulty sperm was his, what I ate had nothing to do with with price of tea in China.

2) I took a folic acid supplement and ate a very healthy diet for 6 months before I conceived my daughter.

People like to blame mothers. People like to believe that if they do this that and the other thing they'll be *safe* and your reality will never become theirs.

1:30 AM  
Blogger trisha said...


B also asked the mother what she thinks caused the autism...

Why ask that? It's a neurological disorder.

7:43 AM  
Blogger Psycho Kitty said...

T, this post is beautiful just as it is.

8:23 AM  
Anonymous Robyn said...

Good job! I agree that it's perfect.

8:38 AM  
Blogger Tara Marie said...

I loved this post!

1:39 PM  
Blogger Laurie said...

What a GREAT post! Thank you for sharing this with us.

I don't know much about autism except what I learned from an education professor I had in college. His son has autism, and so he shared with us a little about his son.

I'm always amazed at people who ask me, "Did you cause your son's liver disease? If no one knows HOW they get it, it must have been something you ate!" Well, if oranges, water, bread and grits cause Biliary Atresia then yes, I caused it. But why don't more people have BA, then? Because CERTAINLY I'm not the only woman to have subsisted on that diet!

8:59 AM  
Blogger Cjara said...

Such a good post Trisha. If people don´t get it after reading this, then they never will.

7:51 AM  
Blogger Piece of Work said...

Great post, Trisha.

3:54 PM  
Blogger Randy said...

Hooray for you, Trisha!

I've got two boys with autism, and, looking back, they were always behind the developmental curve. Yet we still hear about vaccines, gluten, etc., as the cause, and my mom wanted us to try that chelation/heavy metal removal protocol because she saw something about it on TV. For some reason, various autism magic bullet cures like chelation and gluten free diets have developed fanatical, cult-like followings, which can turn support group meetings into ugly screaming matches. Nobody really knows about causation. My attitude is that our goal is to help our kids be the best they can be now, and let medical science work on causation (and they are making slow progress on the genetic end, while other those other theories have been all but debunked).

You're not likely to hear back from that gluten-free-diet fanatic. Her mind is made up, and you aren't going to change it.

9:00 AM  
Blogger Kevin said...


2:49 AM  

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