Aspies For Freedom

Hi, I just wrote this email reply to my parents. They're outgoing christian conservative and don't think I'm autistic (I'm sure I've got HFA or Asperger Syndrome). I'm open for suggestions/improvements (since this won't be my first comming out). You can use it as a template for whatever you want.

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Dear Papa & Mama,

[insert NT chit chat so they know you're still sane ]

>>>P.S. You mentioned the term “autism” both to me and to Mama.

About autism:
I'm pleased that you're concerned about me and that you don't think I'm autistic, but I think you're underestimating the situation. I don't want to criticize you but this is an important issue for me and I've done a fair amount of research on the topic.
I bought a book from "prof dr med dr phil" Helmut Remschmidt, director of a psychiatric clinic for children & youth. he has a good reputation and is chairman of "bundesvereinigung hilfe für das autistische kind". the book describes autism and related disorders in greater detail.

on the telephone you mentioned autism is a personality disorder, however it belongs to the Pervasive Development Disorders (PDD). even asperger syndrome (almost equivalent to high functioning autism) belongs to the PDDs.

>>>  I have had personal dealings with autistic people and can assure you that you do not have this disorder.  

just because you've dealt with autistics doesn't mean you can diagnose others.
also, it sounds like you're putting all autistics in the same boat, which isn't true at all. it's a disorder that effects fundamental cognition processes and the outer appearance of the person can be unnoticed. in fact a lot of cases remain undiagnosed or mislabeled where the person is able to function in society but still has problems (as in my case).
from the book in the chapter about 'frühkindlicher autismus':
"Was den Langzeitverlauf betrifft, so zeigen die bislang vorliegenden Längsschnittuntersuchungen folgendes (Weber 1985): Ein bis zwei Prozent sind im Erwachsenenalter fast unnauffällig, fünf bis 15 Prozent bewegen sich im Grenzbereich zur psychopathologischen Auffälligkeit, 16 bis 25 Prozent bleiben weiterhin psychisch auffällig, lassen sich aber gut führen. Bei 60 bis 75 Prozent muß der Langzeitverlauf als ungünstig bis sehr ungünstig angesehen werden, d.h., diese Menschen sind stets auf fremde Hilfe angewiesen."
[ translation: 1-2% auf children with kanner syndrome (autism) don't appear odd amoung others, 5-15% on the borderline to conspicuoussy (appear odd), 16-25% are conspicuous but let themselves be led, but 60-75% have more disturbing long term problems, they are dependant on others ]

So the chance is high you've met those with severe disabilities, also known as low functioning autism. on the other side there's high functioning autism which generally can't be distinguished from asperger syndrome.

>>> You are introverted and have areas where your social skills are quite
>>> weak, but that is not the same as a severe mental or emotional
>>> disorder.  Certainly you have weaknesses and can work on your
>>> personality, but fortunately you do not have that incurable and
>>> terribly debilitating condition.  

Yes I'm introverted and my social skills are weak. No, it's not the same as a mental disorder. These two things aren't really related in my case. Sofar I've been confused who I am and this has limited me socially.
now I know who I am, reading and understanding autism reveals my differences to others and helps me accept who I am and deal with the problems at hand.
Yea I'm working on my personality! However I still have this condition. Yes it's incurable and frankly I'm glad I have it! There are alot of positive aspects to autism, most people don't know this. We're proud of who we are! (there's a radical group, aspies for freedom, who think of themselves superior, i don't think it's a question of superiority, both have their place in this world, it just shows that it's not always a "terribly debilitating condition" how you say)

>>> Autism is much more than a worse case of what you have.

as mentioned above the severity is from case to case different, yet the underlying characteristics of the person are the same. i'd be glad to share how this is in my case, maybe in the next mail (i'm running out of time).

>>> There is no way that you could do your present job or have a 3-hour
>>> telephone call with us, if you had anything like this tragic disorder.  
>>> You need not worry about labeling yourself this way.  We can all
>>> thank the Lord for that.  Even so, I’m glad you are identifying deficits
>>> in your personality that you want to work on.  Hopefully, the Lord will
>>> use these months of your being on your own to develop a new
>>> strength in your character.

those are blunt statements and not quite my case. it can be tragic disorder or a blessing (with associated problems that need to be dealt with). in my case it's more a feature than a bug (computer joke ). an important aspect in dealing with autism is understanding the issue with acceptance and respect. understanding that people aren't always the same and can't be put in the same category. i'd rather be called an alien than a normal person, for that's who i am (not in a negative way, in a positive way, alien = different, difference = uniqueness, uniqueness = character).
i'm not worrying about labeling myself this way. as you know it's not the first label i put on myself, and the previous were attempts to find this one. I'm glad this label exists, now i can finally work on self identity instead of confusion. thank you lord for this condition and label.

we still should talk about implications and how to manage these.
love,
David

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i can't await their reply

Though the distinction between HFA, LFA and AS isn't exactly a useful one, in this instance it probably was useful due to explaining the fact that autism is a spectrum 'disorder'.

Good luck on convincing them.

[insert NT chit chat so they know you're still sane ]

lol :lol:

Good luck

One of the best ways of explaining autistic children to their parents would be to meet autistic adults.

I have experienced my life as a person with Kanner's, and now in my middle years have several university degrees, and am well thought of by people whose opinion counts.

No one wanted to marry me, or anything like that, but knowledge itself has provided other compensations.

Stella has no ideas of her own. She can only copy what she has seen and read

Yes. How true. But how first to decide which and what to choose for you from the ever-growing encyclopaedia inside my head.

In the end, though, isn't that true of everyone in the world? Creativity can not exist in a vacuum, afterall.

If my parents wrote to me and advised me to "work on your personality" I would reply "Get @#$%ed, I'm not changing, I like me the way I am, and if you don't like it that's your bad luck, not mine." Just a suggestion.  :wink:

It is interesting that these parents so often characterised autism as a tragic and catastrophic disability. Obviously many people are unaware of the possibility that this image of autism has been constructed by interest groups who have a lot to gain from emphasising or exaggerating the negatives of autism. Obviously many people, including these parents, are naive about the politics of autism, not aware that there is such a thing.

Good luck David.
I don't think I'm superior, and I do think I'm unique and complex.

I feel you have misrepresented the majority of Aspies for Freedom so badly I cannot let the letter pass.

Perhaps this is so from an NT perspective.

What do you expect to happen when you tell your parents?  Or just why do you want to tell them?

I can see no benefit in telling my family about my autism.  I have gone through all the scenerios of possible reactions.  I am not even sure that they might not know that I have autism.  

Unless it is a directly beneficial to you to tell anyone you have autism, why do it?

I agree with M.

Wenn es etwas in Deiner Beziehung zu Deinen Eltern ändern kann, dann erkläre ihnen, was Dein Autismus bedeutet. Wenn Du einfach nur von Deinen Eltern so akzeptiert werden möchtest, wie Du bist (egal ob autistisch oder nicht), dann würde ich das eher von einer anderen Seite aus versuchen, nämlich von der aus, daß Du das Recht hast, der zu sein, der Du bist/sein möchtest. - falls das das zugrundeliegende Problem ist.

Möglicherweise haben Deine Eltern aber auch ein derartig negatives Bild von Autismus, daß sie es einfach nicht akzeptieren können und möchten, daß ihr Kind eine derartige "Krankheit" hat - und sie es nicht bemerkt haben. Immerhin könnten sie ja Dein coming-out auch als Vorwurf verstehen, selbst wenn es nicht so gemeint ist.

Ich habe festgestellt, daß es nur wenige Menschen ansatzweise verstehen können, was Asperger für den Betroffenen überhaupt bedeutet. Und wenn Du ein hochfunktionierender Asperger (ja, ich weiß, ich mixe die Begriffe) bist, dann hast Du gelernt, Dich soweit anzupassen, daß Du möglicherweise als nur "etwas merkwürdig" durchkommst und Dir ohnehin kaum jemand glauben wird.

Bedenke, daß es Leute geben kann, die Dein coming-out gegen Dich verwenden könnten, beispielsweise indem sie versuchen, Dich als geisteskrank hinzustellen.

Sibylle

The aspies for freedom comment threw me off. I don't think of myself as superior, I just don't want others to automatically assume I'm inferior.

I did enjoy reading your letter and I think it may be helpful to me. I've been wanting to talk to my parents about it, but they don't want to hear it. My mom fidgets and looks away, and my dad replied with something like "well, even if there are many things that explain you (and me), it doesn't matter since your personality was ingrained at a young age from your mother and I."

This sounds a lot like the comments about aspies having more "rote memorization than real understanding of their field of interest": just an attempt to view this as a "debilitating and tragic disorder" even when presented with evidence to the contrary.  

Don't give them any points for that.  At all.  

(actually, I think some people have said that about me, but since I'm such an oddball, they are very few)

On superiority--I refuse to think of myself being anything in relation to others as a whole.  I do consider certain of my habits to be superior (for instance, not blurting out any random fact, only the ones I consider to be true), but at the same time I'm unattractively skinny, and physically pretty weak.  You could argue that the mind is more important than the body, and I would agree with you 100%, but that is still an arbitrary judgement based on our own personal values.  For instance, in caveman days my tush would have been dead because of my inferior body.  

All-in-all, superiority as a whole is all in what you think is important--white supremacists think skin color is important, while patriots think your slavish devotion to your government is what's important.  Just another reason not to use it.

I also enjoyed your letter, though, and more or less everything in there is stuff I wish I could convince other people of.

blah, it took me like a week to reply. to elaborate: i don't act on impulse in a social context since i've been forced to withdraw since i mainly talk nonsense when i act on impulse. i need time to think until i can formulate my ideas in a proper way. (proper? bah! what's proper anyways). here i notice the negative side of perfectionism, i need to learn how act more instantly and not perfect (since that leads to a shutdown/withdrawal). but by acting on impulse, this is where my AS traits come to appearance and others could use this to their advantage. This reply is more on impulse.

Yea i maybe overdid it on the definition side. I wanted to point out the differences in severity of autism and the various diagnoses so they learn not to put everyone in one boat.

Good point! Sofar I have contact with 3 schizophrenics (which i can totally relate to and see them as similar in their attitudes and behaviour in life). I hope to get in contact with people on the autistic spectrum.

I'm writing a bachelors work and the lead prof said this scientific work can be completely based on summarizing other peoples work and including my opinion). Well that's not really creative but apparently accepted.

lol

Thank you for the input.

My parents are concerned about me and want to help. In order for them to help they need to understand who I am and where I'm at. For example I'm having trouble adjusting at work, they ask how it's going. in the end i'm having to explain that all the problems are related to AS.
they are constantly trying to help me where possible but missing things, therefor the comming out.
sofar their reactions aren't positive as you mentioned. maybe they'll get it one day, it's a try in the right direction as i see it. yet counterproductive if they can't take it. :roll:
after pondering on sibylle's reply, the majority won't understand how the AS person feels and so explaining the properties of the diagnosis won't really help either. i should focus on explaining how autism relates to me (in an indirect fashion) and mention specific terms in an appropiate context. i can always get a diagnosis and then back it up if it ever comes this far.
if they say you're suppose to act in a certain way, then i'll say it's my right to be how i am. then they'll say but you're loosing out on things in life this way... then i'll say, screw those who demand those things! it's costing me too much, i can't life up to those demands. well that's my initail reaction, more constructive would be to stay who i am and find a middle ground on interaction.

oh and my parents replied and are not convinced. they have never heard of asperger syndrome, they probably have this image of a highly disabled person. they recommend i take some tests or get a diagnosis (which i'm going to do).

about superiority: sorry if i offended anyone. i personally don't think we're superior. i got the impression from various articles written by people with AS and they sometimes make sarcastic remarks such as the following paraphrase: "keep on talking so they know we're still not enemies" or "the others are easily predictable and only follow the latest greatest trends". i now acknowledge that these are humerous throws at what we find odd or difficult. that and somewhere else i read that AFF is a more radically oriented group of people with AS. so therefor the possibly wrong impression. hope this clears things up.

DavidSt wrote

Here is a suggestion; why don't you do some of the tests available online, and also get your parents to take the same tests (if they can read English) and between the three of you compare scores. If they get very different test scores, perhaps that will make them think, and if either parent gets an aspie score, that could also be something interesting for everyone to think about.

There are plenty of tests that anyone can access, no need for a professional to administer them. Links can be found in the Diagnosis section.

The Einstein one? (Unthinking respect for authority is the greatest enemy of truth - Albert Einstein)