Aspies For Freedom

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saw this article while browsing some of my regular sites.  very curebie and pro autism speaks, but i think we can inform him that not all of us are all miserable and afflicted.  he doesn't seem like he's all curebie yet, there's still time to inform him on the other side.

Quote:
When Sports Becomes a Small Matter: A Child and Autism

13th April 2008

There is no category for this topic here. There is baseball, basketball, hockey, football, and auto racing, but there is nothing for topics of far more importance.

This, being my personal blog, has been about commentary on sports. It has never been about my views on matters outside of that.

And, it has never been a place where you would find anything personal. Today, that changes as I find myself placed in a new cause. It is one that touches myself, my family, and as I will outline below, a growing and alarming number of families.

Over the past year, our youngest son has not been developing at the rate that most children do. At first, we chalked this up to him just not accelerating at the rate of our first son, who was ahead of the curve. Now, coming up on the age of three, we saw that he was not communicating, even on rudimentary levels such as pointing when he wanted something. Only when prompted would he respond verbally to a very small list of known words. Things that we initially thought were cute were really signs of something else. There was the jumping up and down when he was excited, spinning in circles, and the one we thought was the funniest… never calling me “Daddy”, but rather, “Mamma. “

Given these signs, we met with his pediatrician and from there, other specialists. The diagnosis was that our son is autistic.

As my wife and family come to grips to this news, we now find ourselves in a life altering experience. The good news is that with early detection, one-on-one and what is called “mainstream” therapy, we can hope that our son will eventually be a productive part of society. What was alarming to me was the incredible trend of more and more being afflicted with this disability. There was a point where the word “autism” would elicit confused stares. Now, nearly everyone in America has a family member or friend touched by this disorder.

Based upon this, I am challenging all that have a platform to do so, to link to this news below, or pass it along. Call it the sports autism challenge, whatever. The hope is that by getting this news to as many as possible in the hope that others can be educated to this disability.

The following information comes by way of the Autism Society of America:

1 out of 150 children in U.S.
1 out of 90 boys
Affects four times as many boys as girls
Lifetime cost of caring for a child with autism: $3.5 to $5 million
Current annual cost to U.S.: $35 billion
Estimated annual cost by 2010: $90 billion
1.5 million Americans affected

Researching has found information that will be valuable to my wife and I, and some indications that we now see as classic traits of autism spectrum disorder that are within our son’s behavior. Passing some of these behavioral traits along may help you, or someone you know, get their child to their pediatrician for an evaluation. Early detection is critical as the earlier a child is enrolled in therapy, the better the odds are that when they grow older they will be able to function in society.

Here are some signs to look for in the children in your life:

Lack of or delay in spoken language
Repetitive use of language and/or motor mannerisms (e.g., hand-flapping, twirling objects)
Little or no eye contact
Lack of interest in peer relationships
Lack of spontaneous or make-believe play
Persistent fixation on parts of objects
Reaching a development milestone only to see regressively disappear
Odd dietary behaviors, such as eating only starches
No fear of danger

The following is from Autism Speaks:

Autism is a complex neurobiological disorder that typically lasts throughout a person’s lifetime. It is part of a group of disorders known as autism spectrum disorders (ASD). Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined. It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person’s ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe.


How can you help? Donate. Spread the word.

To Donate:

Donate to the Autism Society of America

Donate to Autism Speaks

As I said, there is no category here for social causes. However, this is the one time it seemed appropriate and a responsibility to do so. If you know someone with autism, please leave your comments.


emphasis mine.

http://w ww.m aurybrow n.com/?p =450 (broken link).

i am hoping that possibly some aff'ers can comment on his blog and educate him on the other side of autism, instead of just the side that autism speaks and the other curebies say.    thank you for your time.

apparently, comments are a no go, but you can email him at ma ury@busines sofs ports network. com .

any ideas of how to write him?
with some help in the chatautism chatroom, i just sent out this letter to the blog author.  you can use it too if you don't have any ideas.

"I appreciate your desire to help your son and your wish to increase awareness of autism, however, I disagree with your approach.  On your blog, you describe people with autism as 'afflicted', a phrase that offends many adults with autism.  By Autism Speaks comparing autism to AIDS and Cancer, Autism Speaks infers that there is nothing positive about autism at all, and that like AIDS and Cancer, autism must be cured in order to live a long healthy life.  This view of autism is not shared by everyone, including the bloggers on the Autism Hub (http://www.autism-hub.co.uk).

I would like to encourage you to keep an open mind and experience different views about autism by visiting The Autism Acceptance Project (http://www.taaproject.com) and Neurodiversity Project (http://www.neurodiversity.com), two sites which encourage more positive thinking about autism.  I hope I have helped you and your family in this time of need."
I sent an e-mail to him. It's quite long, mostly with text from a couple of posts I've written here, and I provided links to a few essays by Jim Sinclair, as well as some blog entries and the gettingthetruthout.org website.
he wrote back, and he seems pretty open, and not an autism speaks drone as i feared earlier from the tone of the email.  they love their son and knows he needs help.  i don't blame them for going to autism speaks first since they are all over the map, but at least they know there are people that aren't like autism speaks and think all of autism needs to be eliminated.  we'll see what happens in the coming days and weeks.
here's a comment from his blog as of a few hours ago.  from the sound of it, he's more interested hearing from parents about their experiences with their asd child than about the politics of autism orgs (which is understandable).

Quote:
A couple of comments…

My wife and I have been overwhelmed by the outpouring of well-wishes that we have received since I let this news be known. Words fail me in saying how thankful and grateful we are.

I am most pleased is seeing the number of bloggers in the sports community rally around making the data presented within known so that other families can understand autism.

We are also extremely grateful for those that have been touched by autism sharing their experiences. These stories help immensely in one of our anxieties: what does the future hold for our son? While we know that every person is unique, it allows us to see real cases and understand what therapy can do.

Here’s what wasn’t expected…

To be clear, we are not interested in some of the battles waging with regards to how organizations are viewed. This isn’t a call to debate the merits of treatments — good or bad — or the political arguments regarding organizations. This is a call for awareness so that every child that maybe autistic is afforded the best treatment they can at the earliest stages. I understand, and thank those, who have written or posted about these issues, and wish them the best. But, the postings that I will be hoping arrive here are much as most that have arrived in my in-box: here’s the story of my son or daughter, and here is the philosophies that helped us through it. Here is my story of having ASD.

As mentioned, we thank those with sincere hearts, but the only political issue I will be engaging in has to do with awareness and funding to better understand ASD.

Thanks again, all. By visiting, this thread, you show you care.

I liked your message bravesj.
reading the blog now, i see no trace of the autism speaks, and he took off the 'afflicted' language.  Smile
I made 2 posts there which were not moderated, though they were purely about autism speaks, particularly this:
http://www.aspiesforfreedom.com/autismspeaks

It's good to see he listened Smile

Ivar T Wrote:
I liked your message bravesj.



Yes - I did too.
You educated the parent in a good way.

he posted another entry: http://w ww.b izofbaseba ll.co m/ind ex.php?opti on=com_co ntent&task=v iew&id=21 08&Ite mid=114 (broken link)

he seems neutral and isn't the autism speaks type of doom and gloom and is more to the idea that autism is a part of his child that he loves, and doesn't sound like he wants to destroy that part.

but some of the people that are supporting him are pro autism speaks and doomsday types.
My e-mail mostly focused on my experiences, rather than why I am against the goals of Autism Speaks, though I did have a paragraph explaining why I felt the word "afflicted" doesn't apply, and I put some useful links that have to do with perspectives on being autistic, as well as a link to the Asperger Square 8 starting square for parents.

I also mentioned how it's unfortunate that many parents are given doom and gloom descriptions of their kids' futures, because it's really not that bad. A different trajectory, yes. Different kinds of difficulties than what is typically expected, yes. But not devastating. (I also mentioned how my parents agree that raising me wasn't devastating, even though I was quite honest about some of the difficulties and exasperating moments they had.)
Well, it looks like he's taken the "Donate to autism speaks" thing off at least. W00t!
That's all I can ask for, I think. A parent who just wants to help his child, who wants his child to be happy, who keeps an open mind. Not everyone will be as dogmatic as we are; acceptance of autistic people doesn't have to go along with a lot of rhetoric just as long as it means a parent who loves his child just the way he is.

Callista Wrote:
That's all I can ask for, I think. A parent who just wants to help his child, who wants his child to be happy, who keeps an open mind. Not everyone will be as dogmatic as we are; acceptance of autistic people doesn't have to go along with a lot of rhetoric just as long as it means a parent who loves his child just the way he is.


I agree. After all, it's not the dedicated political leaders of causes who constitute the increasing acceptance of a movement, but rather, the acceptance of that movement by the everyday people who aren't themselves advocates.

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