Aspies For Freedom

I wrote this letter to the CEO of NAAR:

Dear Mr. Tringali,

I am writing to you out of concern for children with
Asperger's, as well as adults.  

My Background:  I was officially diagnosed with
Asperger's several weeks ago, but have known I have
had it for several years.  I am a 29 year old, college
educated wife and mother.  I have attended law school
as well as an advanced track Master's/Ph.D. program.

My Concerns:  I do not understand why your
organization pushes children to become "normal" or
neurotypical (hereon referred to as NT).  What is so
great about being NT?  I am very successful in my
life, while being autistic.  I have never desired to
be normal, but have desired the key to unlocking NT
behavior such as lying, deceit and sarcasm.  I have
never wanted to be like other people, I have just
wanted to understand them.

NAAR's stance is a huge disservice to children with
Asperger's.  Of course pushing for equal rights and
striving for understanding are excellent goals, but
when the whole premise for your organization tells
Aspie children there is something wrong with them that
needs to be fixed, your organization is only adding to
the isolation those with Asperger's feel.

This world is made of many different kinds of people.
I would never try and force an NT person into being an
Aspie, just because their way of dealing with the
world makes me uncomfortable and neither should the
reverse be true.

You should know, if you aren't aware already, that
there exists a large, on-line, Aspie community and
many of us are beginning to see the good in protesting
NAAR's stance.  

I will finish with a quote I feel is appropriate:

"My passionate interest in social justice and social
responsibility has always stood in curious contrast to
a marked lack of desire for direct association with
men and women.  Such isolation is sometimes bitter,
but I do not regret being cut off from the
understanding and sympathy of other men.  I lose
something by it, to be sure, but I am compensated for
it in being rendered independent of the customs,
opinons and prejudices of others, and am not tempted
to rest my peace of mind upon such shifting
foundations." --Albert Einstein

I am looking forward to your reply.

If I receive a reply from him, I will post it.
Tallgirl

I just wanted to tell Theasman how much I admire his courage in standing up to the demonstrators!

I also thought it was terrible the way some people treated him. If he doesn't have the right to voice an opinion, who does?

Good luck with your cause!

I've read all your posts and I think that the walk for NAAR was justa waste of time Autism has never been cured isn't cured and never will be cured so if people at NAAR think that Autism should be cured then NAAR is just a load of ******** and that's my viewpoint I myself am also Autistic and being that I think that the NAAR walk is very offensive to those who are Autistic and those who have family and friends who are Autistic THEASMAN that protest you did was great I hope anybody who visits this site will be on your side and agree that the NAAR walk is very offensive

I'm going to be contraversial here and say that I'm not neccessarily against pre-natal testing for any kind of difference.

Now before you tear me limb from limb let me qualify that. I would not be against such a thing if its sole intention was so that the parents could learn about autism in order to prepare themselves to be an advocate for their child. By 'prepare themselves' I do not mean to imply suffering I mean time to educate themselves about the rights of autistic people and how to go about getting good intervention for some of the comorbid conditions that are likely to appear. Imagine how useful a well-informed parent would be.

If however, pre-natal testing was done as a pre-emptive measure to abort foetus' who have gentic markers of ASD then I would not support it.

My general stance on abortion is that its a matter of choice for the woman concerned however.

Oh I agree thats almost certainly what would happen. I'm an eternal optimist though

I'm not sure who that was directed at but so as not to be rude I'll answer in case it was for me

I personally find the association with Einstein and ASD worrying. Mainly because there's no way to verify it and I worry that there seems to be an increasing movement within the advocacy community to try and gain credibility by associating ASD with famous clever people from history or today irrispective of whether they actually are on the spectrum or not.

In my opinion, this is fake credibility that the advocacy movement does not need. The case for autism advocacy should (and does) stand or fall on its own merits. If the people such as Einstein or Bill Gates or Jonny Depp (a few names I've seen mentioned with absolutely no evidence to back them up) are on the spectrum then thats great but as it stands right now they are not. I'm reminded uncomfortably of the gay rights movements 'outing' of people that actually did the movement a lot of harm at the time.

I agree with every word

No I would not. I'm firmly opposed to the idea of any kind of cure.

NT by the way, stands for NeuroTypical

Then I stand (or in this case, sit) corrected

None whatsoever

I'm not trying to claim someone as being anything though, I just worry that there's a lot of self-affirmation by proxy going on here - is that autism advocacy movement so weak that we need to grab anyone who portrays even the slightest hint of an ASD as being on the spectrum? Some people are simply shy, or quiet naturally.

What I want for my daughter is that she grows up to be confident of who she is. I don't want her to have to feel validated by either the opinions of society or an association with celebs - particularly if some of those celebs are *not* on the spectrum.

Please don't feel that I'm 'getting at you' here Gareth but I simply don't understand that - are you saying that autism is a necessary precursor for genius?

But then again - look at you - what you did benefited the autism advocacy movement more than Vernon Smith. I think the real heroes of the advocacy movement are people like you and Amy and Gareth and Micheel Dawson and Larry Arnold and Brett at autistics.org and a lot of teh people at AutAdvo I would want you people to be my daughters role models, not someone long dead who only may have been on the spectrum.

I get you.

Nice one.

Of course. Please don't think that I'm attaching any blame or saying that these actions are wrong because I'm sincerely not.

I'm definitely not saying that autisitic people shouldn't be proud of others like them. I guess my point is that I believe that the people I have 'met' who have taken action like ASMan or like yourselves and Gareth with this forum or Michelle Dawson who has engaged the likes of Schafer et al are worth ten of any Einstien. In years to come I can tell my daughter about Einstien and how clever he was and tell her that what he did was good for Science and I can also tell her about places like this and tell her that what people like yourself are doing is good for people. Autistic people in particular.

I guess what I'm saying is why look so hard for role models that may not even exist when we have excellent and admirable role models within our circle already?

I don't think anyone in this thread would disagree with you on this.

Not every parent is like that wondergirl My wife and I only expect from Megan whatever she feels capable of. That doesn't mean we don't try and show her otehr options because we do - we believe in freedom of choice in matters to do with who someone is. We're not the only parents who feel this way either. One of the things I hope to do is try to reach other parents and let them know why we feel as we do about autism advocacy.

Thats plain unrealistic. No one can do what they want when they want how they want irrespective of difference. No one in this thread, elast of all me would say you should not be free to live your life they way you see fit but there will always be limits - for everyone. Society has to have rules.

Well, before I started reading this thread I'd never heard of NAAR so I think you can safely assume I'm not a member. I strongly suspect they wouldn't really want me as a member as I disagree with all their aims that I've heard about in this thread.

She's classically autistic in that she was diagnosed with what used to be called Kanners autism - she's not someone with Aspergers.

You're right there is a difference but the basis of ASD originates from the same place.

One of the reasons I joined this forum was to try and learn as much as I could about autism from an autistic viewpoint. I firmly believe that whilst I, as Megans parent, am her advocate that you as an autistic person are vastly more qualified than I to speak about any matter that touches on her life as an autistic person. I hope to learn as much as I can in order to be the best advocate I can be for her.

I wouldn't want Megan cured of anything that is not an illness. I hope that if nothing else my refusal of 'cure' and all it implies is clear

I can see and respect that. What I hope is that you and I can learn from each other. I would like to learn all I can from you about how to represent my daughter whilst she isn't old enough to do it herself and I would like to help you to realize that not every NT parent wants to change who you are - we can accomplish much more together than either of us could alone.

I didn't, no. Since ASMan's post I've looked up some medical papers and can see that you are both right - in addition to what you both say it seems that a lot of autistic people have shorter brain stems than NT people. I wouldn't say 'less normal' though, I'd say 'different'

I agree with all that.

One of the things I hope to make you realize is that not all NT's are uncaring and don't respect your difference. I don't want to change you. You're what I hope my daughter will have the confidence to be one day - why would I want to change that?

As i said aboev, she's diagnosed classically autistic, Kanners, not Aspergers They say she is low functioning but thats irrelevant to me.  I'm not even really sure what it means or who such a label benefits.

In my opinion, they're different shades of the same thing. Certainly all the respected medical opinoin on the matter agrees with that.

Great point. I totally agree with you that you should do only what you feel comfortable doing - thats a freedom everyone has a right to but I also think that children should be pushed a little - in an educative sense I mean - motivation is a tricky thing for Megan. I'm concerned by the thigns I've heard about behaviour modification programs and I don't really want to go down that path so what we try and do is bring megan to a point where she motivates herself. For example, at the moment she's learning a pictoral timetable at school. When she's mastered this she'll be able to let everyone know what she wants/needs if she so desires - she'll be motivating herself as she'll see that using the pictoral timetable (which is really a modified version of PECS) gets her what she wants both quicker and with less hassle.

It doesn't make a much diffrence to me, being in college I am up until 4:00 am anyway.     

She's interested in a wide variety of things. Her biggest love is her DVD and video collection. She goes trhough phases of DVD's she likes. Sometimes its music DVD's (she likes Westlife, System of a Down and Robbie Williams) but a lot of the time its actual films. Monsters Inc and Chitty Chitty Bang Bang are her 2 big favourites at the moment. She particularly enjoys playing/rewinding her favourite moments over and over.

She also like playing with her Leapster and she loves watching me play on my XBox which suits me doen to the ground!

She's very into singing and counting and makes up her own songs or sings versions of her current favourites ('Hot Fudge' by Robbie Williams and 'True' by Spandau Ballet are her two songs to do covers of at the moment).

She also loves bouncing on her trampoline. We get her a big one for the back garden last year and there's nothing better to Megan than an hour spent bouncing up and down!

It can get complicated but its not really Megans ASD that makes life complicated but the way that society reacts to it.

I agree. To be honest, I doubt there is one single 'cause' of ASD's.

Again, I agree I think its just a different way of being - sometimes caused by genes and sometimes triggered by environment.

Megan was officialy diagnosed when she was 3 and a bit but we knew before that really. When she was a baby she had an immunisation (DTP) that affected her very badly and we believe that this triggered her autism. I don't think it caused it as I think Megan always had the potential for autism as probably all my family do but I do think that this bad reaction (we had to take her to the Emergency Room as she was having seizures and projectile vomitting) triggered her potential for autism.

Well, the 'official' testing criteria is that a patient falls somewhere in the triad of impairment (awful word that), this triad being social interaction, communication and imagination. What teh end diagnosis is I guess depends on what the Doc concerned believes is the type and severity of 'impairment'. Please note: I prefer the word 'difference' to 'impairment' but I'm using the official word here.

Have you asked your Doctor for a full disgnosis?

We think so

I have indeed. I've even been lucky enough to converse with Jim a few times and think what he says is spot on. My point however is that as a parent you only find this stuff afterwards. If society was less ignorant about ASD's then we would know before

Unproducitve maybe but its the odd parent that doesn't worry about their kids. I don't expect that I'll have to care for Megan for the rest of her life but I accept that it may happen. I don't see it therefore as unnecessary worrying but more a kind of mental preparation for one possibility. But I never let any possibilities rule my thinking.