Wednesday, December 15, 2010

Autism is not a dirty word

I woke up today to a "conversation" on facebook with a link to a video a Dad made showing how his son was "cured" from autism. The article was wrote by a Dr who did all this magical stuff to "fix" this child.
At the bottom there is a VERY short, VERY edited video of the child who is now 6. In the video of the "cured" child, you can see his shifting his eyes all over, and playing with his fingers. ALL very typical autism traits.

I am REALLY sick of people touting their "cures" and giving parents false hope, and they go and bankrupt themselves paying for these treatments. Sadly we have NO idea what causes autism. Or why some kids are more severe then others. I also do not believe it is an epidemic due to immunizations. The numbers are increasing because we are more aware, and less severe kids (Aspergers syndrome) are being included in those numbers. These are the kids that 20 years ago and so were just "quirky, odd, weird, nerdy,etc" I can say this. I am married to one :) He had no idea he had aspergers until our son was dx at age 22 months.  He had learned coping skills to deal with things while he was growing up. We were together for 5 years before I found out he wasn't making actual eye contact with me! He has trained himself to look at peoples months, or forehead. It was actually kinda a relief when he was dx. Now we understand why he kept switching jobs, and a ton of other things he does that I just couldn't understand before.

I came into our marriage with 3 children. None of whom have any signs of autism. Not even a tiny one. They had all their immunizations, they ate crappy junk food, had toys from china which I am sure had lead paint. They are now 20,19,and 16. Still no autism.

I have 3 children with my now husband. They were not immunized, I ate all organic, used only natural cleaning products, cloth diapered, etc. You know all the "right" things. ALL 3 ARE ON THE SPECTRUM!

My husbands grandfather has pretty severe aspergers. He had no idea until our son was dx and we were talking about it. The profile fit him to a T. He managed to live 70+ years just fine. Today he would be counted in the "epidemic", as would my husband.

My husband just met his 3 little brothers for the 1st time 6 months ago. They are 15,13,and 11. Guess what? They all have autism traits! All 3 are now in the process of seeing someone to get dx. This would have never happened had my MIL not came back into my husbands life, and noticed the behaviors comparing them to my husband.

My son was the most severe. I knew at 2 days old something was just not right. He was our 5th child. He screamed ALL THE TIME. Would only let me hold him, and would have raging meltdowns over nothing. He also didn't say a word. NOT A WORD until he was 4. He spun in circles , flapped his hands, and screamed. For YEARS. We got him dx at 22 months. Early intervention at 24 months. He has Early intervention, Speech, and OT. We have never seen a  DAN dr. I have never had him detoxed for metal, he eats dairy and gluten on a daily basis.

He is almost 10. He is fully verbal, has friends, can hold a full conversation, goes to cub scouts all by himself, and does pretty typical 10 yo boy stuff. Is he recovered? Cured? NO. I will never say that. Is he better? Higher functioning? YES. He still has a hard time sometimes, he still obsesses on stuff he is interested in, he still is the pickiest eater I have ever seen. But on a regular basis I get asked " Are you sure Corey has autism?" And while that is nice to hear, yes I am positive. Corey will ALWAYS be autistic. It is not bad, or a "dirty word". It is just part of what makes him Corey.

Now my other 2 ASD kids. They are girls. They are very high functioning, and odds are had Corey not been so severe we would never have noticed anything with the girls. Odds are I would have found them "high strung, quirky, etc"

So in this long rambling post I guess what I am trying to say is, instead of selling snake oil, lets work on earlier detection, genetic links, more education, more support groups, MORE FUNDING FOR MORE SERVICES!!!  And a whole less blaming.


Casdok said...

And raising positive awarness :)

Shelby Nanners said...

and without Corey, the girls and you I wouldn't have noticed anything with Em. She would just be a high maintenance toddler. Her pediatrician would have expressed concern but I would have shrugged it off because she didn't need that label. But because of you I know the label doesn't define her and is able to get her the services she needs.

Katy said...

While we disagree on some aspects of Autism therapies (we do use some biomed, but will never chelate or use the bigger therapies it provides and I do believe vaccines damaged our older son, but that's a long drawn out story with a happy ending), we do agree with many other aspects. We have two little boys that are both, wow. Our older son stopped progressing, our younger son didn't progress. Your story rang with me because our younger son also, from day 2 of life, had something wrong where he cried all the time, ALL THE TIME. Everyone I know knows that story, day 2 of life and all, and has seen it in action. Only I could hold him, not even my husband could hold him. He wouldn't sleep (we would work 2 hours for a 15 minute snooze of light sleep with him), and the list goes on.

And, after all this and this long journey I couldn't agree more, Autism is not a dirty word. I wish I could remove it from our sons lives because of the pain, struggles, hardships, and trials it causes them. It's hard. But, God has a plan for them. He will prevail. Autism can't beat God.

Anonymous said...

I am always shocked at the anger and defensiveness directed at those of us who have seen biomed treatments work. Many, many parents do not want to wait the 10-20 years it would take for the pharm companies and traditional medicine to decide to do the double-blind studies to verify the legitimacy of treatments they won't be able to make a profit on... hmmm, yeah, maybe 10-20 years is a generous estimate. The fact is, unless a treatment comes in a patentable pill, it ain't gonna get studied.

Thank God doctors and researchers and other parents didn't wring their hands and give up. Thank God they found things that work for many kids, and spoke up about them. Thank God they are STILL working and investigating to hopefully find things that will help ALL kids, instead of pronouncing a diagnosis and handing out a pamplet and showing them the door. Do you realize, if it weren't for parents and doctors who refused to accept the medical wisdom of the day, your children's autism would still be considered YOUR fault, the result of cold-mother syndrome?

And I really don't understand the hatred toward parents who say their children were hurt by vaccines. Do you think they are just incredibly stupid? Studies show these parents are more likely to be highly-educated and involved than the norm. In my experience they have also been adamantly pro-vaccine, until a very specific incident with their child. Do you think they are naive? Over-anxious? Lying? THAT many of them?

You mentioned genetic causes... is it really that much of a stretch to believe that a genetic component or defect could cause some children to be more susceptible to vaccine reactions, or environmental toxins, or whatnot? Why such an absolute refusal to even consider the possibility?

No one in the "DAN / biomed" camp looks over the line and says "No way. Your child did NOT get better with early intervention and speech therapy. That is a bunch of a hooey; autism is a medical condition that will only respond to biomed treatments."

Why can't they get the same consideration from "traditionalists?"