Aspies For Freedom

Well gee, by that definition, Daniel Tammet can't possibly be on the spectrum, cuz by golly, he has been in love with his domestic partner and they've lived together for years. Phhhttt!!

Also, some people, like myself, form alternative relationships that others don't understand because it doesn't fit into their tiny preconceived mold.  There are many ways to be.

Common myths about autism, courtesy of the National Autistic Society.

http://www.autism.org.uk/nas/jsp/polopol...120&a=2202

Actually, I can't believe they interviewed that person. It is mostly anecdotal. Other than information on prevalence of ASD related disorders, they don't cite a single study or experiment.

Yale stops, drops and rolls.

(Direct link is  http:// info.med.yale. edu/chldstdy/autism/ )

I was confused and a bit amazed at the one response from a mother in the USA Today article comments.
quote: "This is the most painful thing I have ever been through"  "My heart breaks for her every day"  and signed "Grieving mom"

uh... her daughter is 25. I don't mean to sound insensitive but at what age does the mother stop grieving and having her heart break every day (EVERY DAY??).  

She says her daughter is "highly intelligent", "is a lovely, caring, wonderful person" who "goes to college, and works everyday as an engineer".

Somebody explain it to me because I don't get it.

Sorry, for clarity I should have stated that the mother is upset because the daughter isn't good with social skills and isn't dating anyone.  At least, that was as near as I tell.

Maybe I dont get it because my parents never worried about me "not" dating. They worried a bit if they thought a guy was a creep.  Mom advised me not to reproduce

CRAP!!!

I don't know whether or not I should feel bad or good about this... hear me out though.

This lady came on AFF back in March-ish and said she was going to write this article and she wanted "the other side" of the story. I sent her my contact info and she sent me some questions, but I never felt good about answering it. Call me paranoid, but I didn't want to be the poster-mother for AS... guess Holiday got that rap... Plus, like others with AS, I have a tendency to be a little TOO honest. Meaning that whatever two quotes I'd put in about some of the more trying mommy-times I have would be the ones she'd use...

Though on the same side I could have put a total counter to this argument. I could have stopped it. I'm a good mom. I've been happily married for six years. My daughter starts kindergarten next month and she already knows how to read, at least at a kindergarten level... She is also obnoxiously friendly and is socially involved, for having a mom with AS who is (apparently!) incapable of forming intimate relationships... yea right!

So... am I bad for not sending in my interview/paper?? She just as well could have misconstrued everything I said...

Pfff! People... I just think everyone should know that I HATE journalists.

So here was my short correspondence with this lady:

______________________________


Subject: AFF response

Hi, I am doing an article for USA Today on Asperger's parents raising children (I'm a freelance writer). I would love to hear from anyone in the U.S. diagnosed with Asperger's, whose children may or may not have Asperger's. I'd like to know how the condition impacts your parenting and what are the positives and the negatives. You will be able to check your attributions and quotes prior to publication. Please e-mail me directly at (I took email out). Thanks. Suzanne

_________________

Suzanne,

I'm interested in being part of your story but have some questions. Obviously, as a parent, especially one with AS, I am ridiculously guarded about my family... what are your intentions with this report, what are you/your paper intending to prove/disprove?

I am a 26 YO mom, I am not officially DXed. You will find that many adults with asperger's, especially parents, are reluctant to be official. There are some rather horrible groups and journalists that are anxious to keep aspie parents from their children... and I have no intentions of being loudly in the middle of that debate. I'm human, I'm sure I do things wrong every once in a while, but I certainly am not interested in being the one under the microscope.

That said, I'd be willing to tell you about what how I parent and how its better and/or worse... or just different. I have two daughters, aged four and two... neither of which have been diagnosed for anything, and for all intensive purposes, seem completely normal, to me at least.

So... in order to be able to help you, I will need to know the following things:

What the expectations of me in this article would be (can I be anonymous? Would you want to call me on the phone? How long would this process take?)

I would also need to know what information you're looking for (More specific questions... people with AS don't really like to have open ended questions)

I would also want to know your first and last name so I could investigate you. (I'm sorry for that, you'll have to understand my paranoia with my kids...)

Thanks,
Sarah

_________________________________

Thanks for responding, Sarah. You will find my full name and examples of my previous work at the bottom of this e-mail.  (I cut these out, you can google)

As you don’t want to be identified (which I can certainly understand), I would probably only be able to use a quote or two from you. You asked what I was intending to prove or disprove and the answer is that I want to show that it isn’t only kids who have Asperger’s (as I said on the site, I’m frustrated by the media coverage and scientific studies that ONLY focus on autistic/AS kids).
I’m also a mom myself (two girls, 6 and 2), so I often wonder how having AS would impact my own parenting.

In the article I am talking with Asperger’s parents like yourself, as well as the adult children of Asperger’s parents. I’m beginning to realize this is very controversial.

If you have the time I’d like to know what traits you have that you associate with Asperger’s (I realize you haven’t been officially diagnosed). Also, I realize every Asperger’s person is different, but one thing I hear a lot is that it can be difficult for Asperger’s people to empathize with others. Do you find this to be true? Other Asperger’s parents talk about difficulties dealing with the noise and chaos of children and the need to be flexible. Do you agree with this? What do you think your strengths and weaknesses are as a mom?  How does your husband/partner rate you as a parent? I appreciate any comments you’d care to make.

Finally, if I do quote you, please tell me a little about yourself, where you live and what job you do. (For example, 26-year-old Sarah from Ohio, a mother of two and a part-time librarian.) If you are worried about being identified, then feel free to change details it a bit.

Thanks.
Suzanne

______________________


So there you have it... seems she painted a somewhat different picture to me, so perhaps in that I can be happy. However, perhaps with my info she would have had a different story to tell. I'll stop beating myself up so you guys can if you feel it necessary.

I wrote USAtoday, they are considering publishing my letter, this is what i got from them today and what I sent back:

Dear Ken,

Your letter to the editor of USA TODAY is being considered for
publication. Before publishing a letter, however, we need to verify
several things:

1. Does USA TODAY have permission to publish your letter? Yes, but I feel you need to publish this disclaimer that was published here:  http://www.autism.fm/ as well.

2. Does the letter contain only your own thoughts and words? Yes, but it was written before I saw that disclamer.

3. Know that the letter cannot be considered if it has been submitted to other news sources. Only leter I sent out.

4. Please confirm the spelling of your name, and your city and state. Its good.

5. Know that your letter will be edited for clarity, accuracy and space
considerations. Thanks for your time and interest in USA TODAY. May we print the following edited letter? Yes, but please include that fact the doctors in the article was misquoted.


I am a 39-year-old man who was diagnosed with Asperger's syndrome only
four years ago. I have a good job and many friends. I am glad USA TODAY
has brought attention to the syndrome, but the article included some
stereotypes of people living with this condition ("A long shadow is
lifted on Asperger's in adults," News, July 24).

Research scientist Katherine Tsatsanis, who works with the Yale
Developmental Disabilities Clinic, said dating and close relationships
aren't in line with "Asperger's adults' goals."

People I know with Asperger's syndrome want to have friends, and some
would like to have children. Many people, including me, want good
friendships and would like to date.

The effects of having the condition just make these wants difficult to
fulfill. People with Asperger's don't get body language or social cues
as easily as those who don't have the condition. This makes it harder
for us to really understand what other people are tying to communicate
to us, and it's something we have to work on. People who don't have
Asperger's need to be honest with those who do have the condition and communicate clearly. Insinuating that everyone with Asperger's just wants to be alone is not right and shows that more research needs to be done on the condition.  




I won't let them use me to discredit those doctors more.

That article was poorly written and edited. Bottom line. Too bad they don't let some of the great writers here do their jobs for them.

What I'm puzzled by is that the comments section of this USA Today article has not been flooded with curbie parents wailing about how miserable and unfair their lives are, how the world must stop this tragedy, yada yada. This is a great surprise to me, considering how our own comments were utterly drowned out by the sheer number of them on the Oprah board. How did the curbie zealots miss sniffing this one out for another chance to use their bullhorns?

Just a quick post from me... (still trying to stay in 'Time-out' mode...)

I was was interviewed for this article back in April after I my inquiery to Suzanne about her post on AFF, which asked for input for an upcoming article that she was writing.

After several e-mail exchanges, my spouse included, I began to get a bad 'vibe' that Suzzane was looking for specific data (the 'crap' Max referes to), and was ignoring the core facts regarding the relationship of my spouse and I; and our family dynamics.

In my opinion Suzzane seemed very 'fixed' on obtaining data that supported a certain perspective, hence I withrew our contribution for the article....  rightly so.

Though as Max said, there was 'some good'... but not much 'good research' though...

Back to time-out for me.....

Beammeup

Is that to say that Asperger men are not able to sin as well as NT men?  Does that have an implication that Asperger is a good thing after all?

Just a little tidbit about USA Today...  I once found the autobiography of its founder, Al Neuharth, in a dollar store over a decade ago.  (I see it's now on Amazon, with used copies starting at a penny.)  The autobiography is titled Confessions of an S.O.B.  I read some of it but had to stop because I was too busy with college.  In the part I did get to read, however, he does indeed confess to some quite S.O.B.-like behavior.  Just thought I'd share that to give you an idea of what sort of person would found such a paper.

http://www.amazon.com/CONFESSIONS-SOB-Al...038524942X
(The cover of the book alone is good for a laugh.)

Perhaps articles like the one being discussed here are just a continuation of the paper's S.O.B. tradition.

Go ahead, USA Today, tell women not to bother considering a relationship with us, tell them we can't relate to them.  Anyone up for a defamation or libel suit?