Autism Awareness?

(Picture courtesy of Casdok at Mother of Shrek)


Today is the last day of Autism Awareness Month. But would you know it? I mean, I admit that I don't have satellite or cable any more, and I don't belong to the church of Oprah, but I do follow the news on the web. And really, once World Autism Awareness Day passed us by way back at the beginning of the month, autism awareness dropped pretty much to zero on the national public media scale. So it was more like autism awareness blip than autism awareness month.

Unless, of course, you are the parent of a child on the spectrum. We all know that autism awareness is a 24/7/365 (366 this year) deal.

So, as this is the last day of Autism Awareness Month, I wanted to share some of my thoughts that I have pondered.

First and foremost, it is important to remember that the number now is 1 in 150. 1 in every 150 children are now on the autism spectrum. But why?? That is where the rub comes in.

Much of the public discussion centers around the role of vaccinations, mainly because the cause has a well known spokesperson now in Jenny McCarthy who is quite photogenic and makes for good TV (she is also a very intelligent person, but I think that gets set aside somewhat). The Hannah Poling decision doesn't hurt either (more on that later). But this has really upset a lot of people who have children on the spectrum where vaccines are not a factor. And by upset, I mean vicious. In perusing blogs via my Google Reader I have come across some really nasty posts about not only Ms. McCarthy (not to mention some downright distasteful caricatures), but Hannah Poling's father, John, as well, questioning his character and motivation and attacking his credentials as a neurological physician.

Why are these people upset? Maybe it's because all of the attention right now is focused on vaccinations and they feel there child is left out. Maybe it is because vaccines are being portrayed as a cause of autism, when in reality they may, as in the Hannah Poling case, exacerbate an existing situation. Maybe there is some resentment about their situation. I am speculating here - I don't know the answer. I cannot walk a mile in their shoes, therefore I don't have the right to criticize them. At the same time, they don't know what it's like to have a happy, outgoing child who gets the MMR shot and, within a month, is totally withdrawn and quiet. That's what happened to us and a lot of other parents out there, and that is why we believe that in some way vaccinations contributed to our children being on the autism spectrum.

The bottom line is that, regardless of how they got there, our children are part of that 1 in 150. And we all need to hang together and support each other as we strive to integrate our children into today's society.

I was asked a while back to share my thoughts about the Hannah Poling case. Here is what I think. I think this is a special case - Hannah has a mitochondrial ailment that, combined with vaccines, contributed to her being on the spectrum. What this case represents is the Federal Government admitting that, in certain situations, vaccines can contribute to a child being on the autism spectrum.

I know that there is a large class action going before the vaccine board in an effort to tie vaccines to autism. I fully expect it to fail miserably.

I have no doubt that, as a whole, statistics show that there is no link between vaccines and autism. I also believe Mark Twain when he said "There are three kinds of lies: lies, damned lies and statistics." Like I said, I think the Poling case does establish a link between autism and vaccines, but only in specific situations. Hers was mitochondria. My daughter's may be the fact that she received the vaccine at a young age (12 months). Or it may be genetics - my other two children who received vaccines also experienced problems as babies which fortunately have not carried forth. Given all I know about autism now, I often wonder if I would be classified as being on the spectrum had I been a child today.

The bottom line is that I think individual cases have a better chance of winning in the vaccine court than an overall class action.

Okay, enough about vaccines.

For all the lack of media coverage after World Autism Day, my own autism awareness did increase throughout the month. I met some fantastic new bloggers out in autism world, including

Casdok, the Mother of Shrek (and owner of the puzzle piece pic I have been using)
Judith, over at Autismville
LeeLee at The Stimming Spot
Jen at Find Out What Jen Finds
SoCo mom at For James
Elissa at Managing Autism
Cyndi at Matthew - The Cutest Boy on the Spectrum
Genevieve now at GenevieveHinson.com and the founder of the autism awareness blogroll.

And I can't forget my dear friend Katherine, the GFCF Mommy, who always has great things to say. Nor Queen Bee, who has been a friend of this blog almorst from the start.

I encourage you to read these sites and the many others that I have yet to read and find (please check out Genevieve's blogroll). These are everyday parents like Valerie and I dealing with the ups and downs of life with autism, and I want to personally thank all of them for their willingness to share their lives. We are definitely all in this together.

Finally, a word about DAN!. For those who don't know, DAN stands for Defeat Autism Now, an organization founded by the late Dr. Bernard Rimland. This organization is dedicated to finding a cure for autism primarily through biomedical intervention, although admittedly DAN was and still is also a strong proponent of the GFCF diet. We never had much success with biomedical treatments, and we ran into a lot of, to put it kindly, DAN shysters. But others have had some success, with the ultimate goal of having our children be just like any other "normal" child.

Well, there is another way to defeat autism, and it's called living with it, and not letting it defeat you. I had mentioned before that I really don't want my daughter to be neurotypical - what does that really mean anyway? But I do want her to be independent, and I want her to be able to successfully function in society when she becomes an adult. There are plenty of people living with autism that have successfully integrated into society and have not let autism impede their ability to live their lives as fully as possible, and my daughter will be one of them. I will, with all I have, encourage her to develop the perseverance she needs to succeed.

On another blog I wrote about a man named Tom Sullivan, whom some of you may have heard of. Blind almost from birth, Tom realized, as noted on his website http://www.sullivanspeaks.com/, that in order for him to be equal in a world full of sighted people, he must be better. And with that positive attitude he developed the perseverance he needed to overcome his blindness in society. He became a scratch golfer, and fulfilled his dreams of being an actor and an entertainer. He wrote his autobiography ,"If You Could See What I Hear," which was later turned into a movie I highly recommend (if you can find it). The last scenes of the movie show Tom saving his niece from drowning in the family pool. All he heard was the splash and he knew he had to act. In the notes following the movie, it was revealed that in real life, it wasn't his niece he saved, but his own daughter.

I don't know what Tom would do, but if someone were to go to him tomorrow and tell him that they could restore his eyesight, I think he would say thanks, but no thanks.

His vision is already better than most.