Re: Accepting my AS

[Guest guest]

Norah Willett wrote:

> I hate to always bring this up all the time, everywhere I am that

> people know about autism, but I'm still having a problem with this.

> If you want to kick me off the list over it, it's OK.

Don't be silly. No one is going to do that.

> Did anyone else have a hard time accepting their autism or AS, or did

> they first think it was somehow a " bad " thing to have? I was

> starting to accept it, now I'm thinking " oh it can't be " . If I did

> get formally diagnosed would that help, I wonder? I have had several

> doctors tell me I don't have it, so it's easy to believe them

> sometimes.

....

> I think some doctors really don't like to diagnose AS or autism if

> they think there could be any other explanation, especially in

> adults.

Well, I know that you and I have discussed this before, and from what

you told me, it was my impression that you probably did not have AS so

much as something like OCD. OCD has a lot of anxiety-driven features,

like what you describe, and certainly you have been perseverating on

whether you have AS or not since I have " known " you online.

My former roommate is diagnosed as OCD, and when we lived together, he

had a lot of AS-like traits beyond the repetitive behaviors that are

common to AS and OCD, but despite the similarities, I always knew (and

this was before I knew what AS/autism were) he was not like me. Now

that I know about autism/AS, I can identify why I thought that he wasn't

like me despite the similarities. He avoids social contact like I do,

but his avoidance comes from a different source than my avoidance. He

lacks my overliteral interpretation of language, and he is more able to

just " be " and not have to analyze everything (especially social stuff)

to be able to get by. He communicates like an NT, which is to say that

he uses the same kind of verbal shorthand that NTs do. He had a lot of

perseverations; his ability to perseverate matched my own, and that is

notable.

In short, the description you have given of yourself matches what I see

in my former roommate, very strongly, and he's diagnosed as OCD...

which, btw, is something I learned after I first suggested to you that

OCD may be what you are experiencing.

> And when I saw these doctors, even though I was expecting an AS

> diagnosis, I really didn't " want " it. So when there was something

> in my childhood that could be construed either as autistic or a

> normal child, such as collecting stamps & coins, I quickly agreed my

> interest was probably normal. Now I'm remembering it probably was a

> little more intense than normal.

Perseveration alone is not an absolute indicator of AS. You do

perseverate-- even if your interests like stamps and coins were normal

then, your interest now in whether or not you have AS seems pretty

obviously perseverative.

> And it seems to me that even if NT

> kids are overprotected, when they do get to play with kids they

> instinctively know what to do. Oh they may be shy or even socially

> anxious, but they usually have a couple friends. I rarely had any,

> and even if I did have a friend it'd end in them running away from me

> or dropping me very quickly.

I really dislike that criterion of autism and AS, the one that says

" Failure to develop friendships appropriate to developmental level " or

whatever is the exact wording. There are a lot of reasons that people

can fail to develop friendships as kids.

> But how can I maintain a more positive attitude about autism and that

> it's OK to have it? I don't seem to have the postive AS or autism

> traits most of you have--I'm not creative, for one thing. I'm just

> afraid I'll be totally in denial again when I see the doctor, and

> will just tell him " oh, I've been having a lot of social anxiety and

> need to get back on meds so I can work on it " and totally ignore the

> AS list. Also there's not really much time to go over it in the

> session--should I mail it to him beforehand?

I have been assessed for AS/autism a number of times, and I have never

felt the need to make a list (like a cheat sheet) of traits, as if I was

pleading a case before a judge. Maybe I would, if I were looking for a

diagnosis, but had not been able to get one in previous attempts, but if

I were looking for an honest assessment, I would find a shrink that

hopefully can be trusted to give a reasonably accurate assessment, and

let him/her guide the process. The trick is finding one that can be

trusted to make an accurate diagnosis.

Would you accept it if you did get diagnosed as AS? So far, you have

been told that you do not have it by professionals (and certainly, they

can be wrong about that), and obviously, you do not accept that, or else

you would not still be pondering the question. I wonder if you would

still be in doubt if the diagnosis went the other way.

I can't answer the question as to how you can accept autism/AS. I don't

know that acceptance of it is a matter of having positive traits that

balance the negative ones-- when I was depressed, my positive traits

were all but invisible to me, while the negative ones seemed to be the

focus of my existence. Everyone has positive and negative traits, and

it is not really productive to try to categorize them as AS traits or

not-AS traits; they are all Norah (or , or ??) traits. The thing

that changed, in my case, was my view of myself; when I regained

self-esteem, I began to see my positive traits, and the negative ones

seemed less onerous. I liked myself, and when I learned that there was

a label that described me, I accepted that, because I liked who I was;

whatever you call me, I am still me, and I like me. I think that is how

one accepts his or her AS/autism... by accepting his or herself. If you

accept yourself, I think you accept whatever it is that you are.

I am going to wildly speculate here, and it sticks in my mind that the

last time I tried this, it offended someone, so I will disclaim this by

saying that I am merely attempting to answer the questions you posed,

not to cross any boundaries that should not be crossed.

It seems to me that your perseveration with having AS... wanting it to

the point that you do not accept the statements from the professionals

that say you do not have it, but also not wanting it (as you remarked

above), has to do with a search for a singular thing that you can point

to, something that will describe why things have been hard for you where

they are so easy for others. You want something to identify the source

of the problems (which is understandable, for sure), but you don't want

it to be something that is permanent. I think you're possibly looking

more to change what is " wrong " with you than to accept it. What do you

think?

[Guest guest]

> I really dislike that criterion of autism and AS, the one that says

> " Failure to develop friendships appropriate to developmental level "

> or whatever is the exact wording. There are a lot of reasons that

> people can fail to develop friendships as kids.

I also dislike that criterion because a whole lot of autistic people

-- any who are not actively avoiding friendship, which is a lot more

than many people assume -- can develop friendships as children when

given the right people to be friends with and the right environment.

> I have been assessed for AS/autism a number of times, and I have

> never felt the need to make a list (like a cheat sheet) of traits,

> as if I was pleading a case before a judge. Maybe I would, if I

> were looking for a diagnosis, but had not been able to get one in

> previous attempts, but if I were looking for an honest assessment,

> I would find a shrink that hopefully can be trusted to give a

> reasonably accurate assessment, and let him/her guide the process.

> The trick is finding one that can be trusted to make an accurate

> diagnosis.

Actually, you may not know this, but a lot of people give the advice,

particularly to autistic people, that when going to a doctor you

*should* have a list of traits in hand, and if you're going to a

doctor about an autism-related diagnosis you should be able to tell

them why you think you might be autistic and that a list can be

helpful for this. I have seen this advice enough that I certainly

would not hold it against someone's diagnosis for actually following

it, whether they turned out to be autistic or not. (In fact, it can

be a very autistic way of handling things.)

I have personally found that when I don't make a list, I forget

things, sometimes important things. I cannot recall information on

demand, especially in a situation having anything to do with a doctor.

My surgeon loved me a few months ago because I, unlike most patients,

had listed off everything that could conceivably go wrong (that would

be specific to me) and what to do about it, knowing that I would not

remember what to write on a form in his office. If I were undiagnosed

and going for a diagnosis, I would apply the same strategy.

It is especially common for a subgroup of autistic people to use more

of an AI-script approach to conversation than a communication-based

one, if we don't watch ourselves really carefully. I have a friend

whose therapist asked her, " Do you have any learning disabilities? "

She said " No, " even though she did have learning disabilities, just

because she couldn't think that fast and that was the way of

responding she had learned over time (in part to prevent getting hit

for not answering fast enough). For those of us who, like her, have

trouble coming up with things on demand and may even say the opposite

like that, lists like that can be very important, ensuring that we

don't mess up and claim we didn't have a problem that we did or that

we did have a problem that we didn't.

I certainly could never remember my entire relevant history sitting

here, much less in a doctor's office. If I simply let a diagnostician

lead the whole process, I could end up convincing them that I had a

whole lot of social skills as a child just by answering questions the

wrong way or being unable to provide supporting data. I might also,

as I *have* done, do the " yes/no " thing in DISASTROUS ways that get me

all kinds of inappropriate labels (the original claim that I

hallucinated came from me " yessing " some intake guy at a psych ward at

the wrong time, and some later claims about other conditions

undoubtedly came from yessing and noing at the wrong times and then

providing plausible ELIZA-like dialogue when questioned in certain

ways). That is a fact of some kinds of autistic communication and

also of some kinds of autistic recall.

I do understand the points you're making, and you might be right, but

I disagree with the idea that making lists (I don't think they're

cheating) is a factor against being autistic (I can see a lot of

reasons it would be an indicator that either a person is autistic or

is following advice I've seen aimed at autistics).

[Guest guest]

,

Thanks so much for your post.

Yes, that's exactly what I'm looking for--a reason why I've been unable to

have friends and a normal life, have lost jobs (though not recently), and so

on, and that is something I could change!! It's why social anxiety disorder

and avoidant personality disorder and some features of OCD are easy for me

to " accept " and I'm never in denial about them (and I meet every single

criteria for SAD & AvPD & some for OCD) --because they're " curable " with a

lot of hard work. But it's hard for me to accept that I might have

something that, even if I were to get over my AvPD, SAD & OCD, I would still

have problems making friends.

I've always wanted to have people in my life without constant worrrying they

were going to dump me, etc. For instance, one of the reasons I haven't

dated in over 10 years (besides the fact that I'm kind of ugly-looking) is

that I'm afraid to start for fear I'll fall in love with the guy but be an

inadequate partner for him for various reasons, and he'll dump me. I'm also

afraid of being " settled for " , and of being chosen by an abusive person

because I have low self-esteem.

But on the other hand, I'm lazy as well, and afraid if I do all that hard

work to change, that I may end up as a socially confident and non-avoidant,

but still disliked and friendless person.

I agree that that AS criteria about " failure to maintain peer relationships "

or however it goes can be misleading, because that can come for a variety of

reasons. Someone with severe social anxiety might fail to maintain peer

relationships. Someone with depression or schizophrenia might also not

maintain peer relationship, but it would be for a different reason that it

would be in an autist or Aspie.

But one thing I've noticed on the various forums & lists for AS I've been

on, is a lot of Aspies who would really like to be able to make friends and

have social things take less effort and thought than they do for an Aspie,

and this I can relate to. This is one of the reasons why I continue to

think I must have AS. I also read parents' accounts of their children's

coming home crying after yet another rejection or bullying or teasing, and

being sad that they didn't get invited to a party or their former " friend "

ran away from them at recess. These are all experiences I have had as well.

I also do believe if I could accept myself better, I would better be able to

accept whatever label applies to me, even if it was something permanent like

AS or autism.

I'm not sure what you mean by NT " verbal shorthand " . I don't think I do it.

It's probably why I have problems communicating, because I don't know how to

do this. Do you have any examples of this you could give?

I see what you mean about having a " cheat sheet " . It does seem kind of like

that when you think about it, doesn't it. But on the other hand, AS &

autism is harder to diagnose in girls & particularly in middle-aged women.

I have no doubt learned alot of coping skills and " pretending to be normal " .

I go in the doctor's office, and there's no athletic feat to perform so he

could see my clumsiness, for instance. My eye contact seems fairly normal,

especially for someone with social anxiety. I honestly thnk if they'd been

diagnosing AS when I was about 5 or 6, I'd have been diagnosed with no

problem! Or if my parents were still living and were able to come with me

to the doctor and tell exactly what I was like as a child, or if there was

anyone else who would have known me then. I really do believe that

clinicians have trouble diagnosing AS in older women unless they exhibit

" classic " AS or autistic traits. I've read about this as well. It's

another thing that keeps me believing I probably do have AS.

Plus I'm afraid that if I come to believe I don't have it, someone along the

line will think I do and tell me about it. I know that sounds silly, but it

is a worry of mine -- some future friend or boyfriend will give me an

article about AS or the AQ test or something, and ask if I think it might

apply to me, and I'll have to start the whole process over again or else be

classed as being in " denial " . I keep reading about AS people being brought

to the doctors by their spouses and being in denial about it-- Meyer

even wrote about it, and he's an Aspie himself.

Thanks again and sorry I'm so neurotic about this!!

Norah

>

> Reply-To: AutisticSpectrumTreeHouse

> Date: Fri, 26 Dec 2003 11:01:31 -0700

> To: AutisticSpectrumTreeHouse

> Subject: Re: Accepting my AS

>

> It seems to me that your perseveration with having AS... wanting it to

> the point that you do not accept the statements from the professionals

> that say you do not have it, but also not wanting it (as you remarked

> above), has to do with a search for a singular thing that you can point

> to, something that will describe why things have been hard for you where

> they are so easy for others. You want something to identify the source

> of the problems (which is understandable, for sure), but you don't want

> it to be something that is permanent. I think you're possibly looking

> more to change what is " wrong " with you than to accept it. What do you

> think?

>

>

[Guest guest]

> I also dislike that criterion because a whole lot of autistic people

> -- any who are not actively avoiding friendship, which is a lot more

> than many people assume -- can develop friendships as children when

> given the right people to be friends with and the right environment.

Yes.

And as an adult, I've found that it *is* possible to quickly become

friends with someone, provided they are the right someone. I can't do

this with most people, just a select few. But it is weird, scary, and

exciting when it does happen.

My way of forming friendships is much more " intense " then most people seem

to be willing to accept. Fortunately, I've had a few friends that are

willing to accept my intensity and who got to know me.

It is amazing how quickly this can happen when the right combination of

traits is present in the other person. Of course someone watching would

notice the speed but also the " strangeness " of it, but that just happens

to be how I form friendships, not something that needs a cure.

--

[Guest guest]

Certainly not!! It sounds pretty cool, to be honest.

In my case I can't make friends at all, and if anyone does try to befriend

me I think they must be doing it out of pity, so that is something that I

need to work on.

Norah

>

> Reply-To: AutisticSpectrumTreeHouse

> Date: Fri, 26 Dec 2003 12:33:59 -0700 (MST)

> To: AutisticSpectrumTreeHouse

> Subject: Re: Accepting my AS

>

> It is amazing how quickly this can happen when the right combination of

> traits is present in the other person. Of course someone watching would

> notice the speed but also the " strangeness " of it, but that just happens

> to be how I form friendships, not something that needs a cure.

>

> --

>

[Guest guest]

> In my case I can't make friends at all, and if anyone does try to befriend

> me I think they must be doing it out of pity, so that is something that I

> need to work on.

I'm not going to disagree with you about your own capabilities, but I will

say that things seemed pretty hopeless for me until I stumbled upon people

with the right combination of traits (which are very rare in the general

population). So I would be careful about saying you won't ever be able to

make friends when you haven't experienced every combination of traits in

other people...

That said, I won't do the NT thing and say " there is someone for everyone "

or nonsense like that. I don't know if there is or isn't for you. But I

do know that if there are people that would be easy for you to become

friends with, you might not know there are until you meet them.

--

[Guest guest]

Well, yes, plus with my current mindset I'd probably still think they were

just being nice out of pity, so I do need to work on that mindset!

Norah

>

> Reply-To: AutisticSpectrumTreeHouse

> Date: Fri, 26 Dec 2003 13:12:06 -0700 (MST)

> To: AutisticSpectrumTreeHouse

> Subject: Re: Accepting my AS

>

> That said, I won't do the NT thing and say " there is someone for everyone "

> or nonsense like that. I don't know if there is or isn't for you. But I

> do know that if there are people that would be easy for you to become

> friends with, you might not know there are until you meet them.

>

> --

>

[Guest guest]

On Fri, 26 Dec 2003 11:38:56 -0800 Norah Willett

writes:

> Certainly not!! It sounds pretty cool, to be honest.

>

> In my case I can't make friends at all, and if anyone does try to

> befriend

> me I think they must be doing it out of pity, so that is something

> that I

> need to work on.

>

> Norah

i've the same 'condition.'write me offlist anytime if you want

kim

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[Guest guest]

alfamanda wrote:

> I do understand the points you're making, and you might be right, but

> I disagree with the idea that making lists (I don't think they're

> cheating) is a factor against being autistic (I can see a lot of

> reasons it would be an indicator that either a person is autistic or

> is following advice I've seen aimed at autistics).

I was not intending to convey that idea. Rather, I was using it as a

support of my hypothesis that Norah was trying to get an AS dx, rather

than simply being evaluated to see whether she had it. I make lists as

such all the time... some electronically (in the computer), others

mentally.

[Guest guest]

Well, there is one way to chemically test it, and it's the perfect time of

year.

Slam down a pint of eggnog.

To avoid giving a " spoiler " that may produce a Placebo effect, I'll put the

standard results at the very bottom of this post.

Accepting my AS

> I hate to always bring this up all the time, everywhere I am that people

> know about autism, but I'm still having a problem with this. If you want

to

> kick me off the list over it, it's OK.

>

> Did anyone else have a hard time accepting their autism or AS, or did they

> first think it was somehow a " bad " thing to have? I was starting to

accept

> it, now I'm thinking " oh it can't be " . If I did get formally diagnosed

> would that help, I wonder? I have had several doctors tell me I don't

have

> it, so it's easy to believe them sometimes. But because I'm a woman, have

> no parents who were around to tell what I was really like as a kid, don't

> remember everything I did back then, and many of my traits could be

> explained by anxiety disorders, I think it's thrown them off the track.

> Plus I had extreme overprotection due to being an only child and my dad

> having an irrational fear of my getting colds and infections, so I didn't

> even get much chance to play with kids until I started school, then I was

> kept in from recess a lot, again because of my dad's fears--the doctors

> think that this contributed to my being socially clueless as a child, and

> that the teasing & rejection I got as a result caused me to develop social

> anxiety disorder & eventually, avoidant personality disorder.

>

> I think some doctors really don't like to diagnose AS or autism if they

> think there could be any other explanation, especially in adults.

>

> And when I saw these doctors, even though I was expecting an AS diagnosis,

I

> really didn't " want " it. So when there was something in my childhood

that

> could be construed either as autistic or a normal child, such as

collecting

> stamps & coins, I quickly agreed my interest was probably normal. Now I'm

> remembering it probably was a little more intense than normal. And it

seems

> to me that even if NT kids are overprotected, when they do get to play

with

> kids they instinctively know what to do. Oh they may be shy or even

> socially anxious, but they usually have a couple friends. I rarely had

any,

> and even if I did have a friend it'd end in them running away from me or

> dropping me very quickly.

>

> And I have always been physically clumsy. That's not caused by

> overprotection or social anxiety. I'm not always bumping into things, but

I

> still am clumsier and not very graceful. My dad had thought it was

because

> grew too fast and had poor eyesight which was not corrected properly, but

I

> doubt it. (See how I'm interjectng things that could account for my

> problems? This is what I do with the doctors, and I think it's influenced

> them somehow.)

>

> I'm supposed to see the last doctor I saw about this again on January 7,

and

> am making up a list of my AS traits. I've tried to remove ones that could

> be explained by social anxiety disorder, since the other autism doctor I

saw

> took a list I'd given him and said most of the things on it were things

that

> a socially anxious person would write.

>

> But how can I maintain a more positive attitude about autism and that it's

> OK to have it? I don't seem to have the postive AS or autism traits most

of

> you have--I'm not creative, for one thing. I'm just afraid I'll be

totally

> in denial again when I see the doctor, and will just tell him " oh, I've

been

> having a lot of social anxiety and need to get back on meds so I can work

on

> it " and totally ignore the AS list. Also there's not really much time to

> go over it in the session--should I mail it to him beforehand?

>

> Thanks

> Norah

>

>

>

>

>

>

[Guest guest]

Norah Willett wrote:

> Yes, that's exactly what I'm looking for--a reason why I've been

> unable to have friends and a normal life, have lost jobs (though not

> recently), and so on, and that is something I could change!!

I can understand that. Because of the particular order of events

leading up to my eventual dx, I found learning of the spectrum to be

wholly positive, without the angst that a lot of people have when they

find out that it is not a psychological condition that can be fixed with

the right therapy (or drug). For those of you that have read my story

umpteen times already, I apologize in advance, but I can't help writing

about my favorite subject (me), and it is relevant to the topic at hand.

I became very depressed in late 1991. 1990 to early 1991 was the best

time in my life, ever; it was my first year and a half in college, and

wasthe first time I had ever been even remotely accepted by my peer

group (if I can truly call NTs my age peers). That first year in

college was sandwiched right between the period of abuse that extended

from middle school until my high school graduation and my self-imposed

exile (I moved to a city some 50 miles away from the college) after I

had just about gotten myself kicked out of school for poor grades.

Even though that fun time was in the middle, I am still certain that the

depression was an echo of the abuse that had plagued me years ago. When

I went into exile, I left behind all of my new friends; I left behind a

place that will forever remain special in my mind (I associate strongly

the place with the things that were in my mind at the time I was in that

place). I moved to a place where there was some level of ostracism,

which was kind of a jolt for me... it was like a reminder that I was a

whipping boy for whomever wanted to abuse someone.

The depression followed me as I moved out of exile and back to another

Cal State University campus... it even followed me when I re-applied at

the original campus (Cal Poly Pomona) and became a student there yet

again. I hated myself... I hated everything about myself. I had no

idea why everyone hated me, but I had internalized the things that they

had been telling me for years. I agreed with the things people had been

saying about me.

For years, I moved from place to place, trying to find something, but

never knowing what it was. From 1991 to 1997, I moved three times, for

no really good reason. The depression contined to deepen; in the last

few years, the suicidal ideation was pretty close to constant, and only

my fear of maiming myself (and surviving) kept me alive. It was my own

cowardice and my own confidence in my inability to do anything right

that kept me alive. Still, even then I knew that I was in a holding

pattern, waiting until things got bad enough for me to screw up the

courage to do what I had long known what I needed to do. I was totally

convinced that I would be dead within a year or so, in the last years of

my depression, and had it not lifted, I probably would have been right.

In 1997, my mother finally was able to get me to do something about my

depression. She had tried to get me to go get help, but I refused. I

thought that my depression was wholly rational; anyone that sucked as

bad as I did, someone so totally devoid of redeeming value or skill or

talent, should be depressed. Should die, too. Now, I was not about to

go to some shrink and ask for help, and there was no one in the state

that could drag me in. So, my mother sent me a bottle of Zoloft, and

asked that I try it. I resisted at first; I was so anti-medication that

I was insulted, in the beginning. As suicidal as I was, at least in

terms of my thoughts, I still did not want to destroy the essence of who

I was, and still go on living. That is what I thought the meds would

do. I had become convinced that the depression " was " me; me without

depression made as little sense as me without autism now. I thought I

would rather die as myself, integrity intact, than to live on as someone

else.

At some point, I decided to go ahead and try the meds. I could always

stop them if they made me feel like someone else, I thought. I began

with the starting dose of 100mg/day.

Within two weeks, the depression disappeared. It was so fast that it

left me freaked out, not knowing how to think or feel without the

comfortable self-pity that had become my macabre friend in the past few

years. I came close to stopping the meds, because I so missed the

ability to wallow in my despair. I didn't stop, though, and soon I

figured out that I could function without hating myself.

I quickly learned that I was okay... the people that hated me for

superficial reasons were wrong. I had no idea what my diagnosis was; I

didn't even wonder if there was a diagnostic concept that described me.

I was me, regardless of the label, and I was beginning to like me. I

didn't need a label to know that I was okay as I was; I just knew.

That was at the end of 1997. Just then, my roommate (the same one who

is now dx as having OCD) had a crisis... he had seen how much Zoloft

helped me, and he decided to self-medicate too. He was as depressed as

I was, and had similarly been circling the drain at the time that my

bottle of meds arrived in the mail. He started with Zoloft, then Paxil;

he then realized that anxiety was a huge problem for him, so he tried

all of the benzodizepines (ie Valium, Xanax, Klonopin). He thought he

had ADD, too, so he added Ritalin. He then decided that maybe there was

bipolar there, so he bought Lithium. (When I learned how toxic Lithium

is at doses just above therapeutic dose, I was able to convince him not

to try it.)

This unholy cocktail of drugs didn't help him, and he became addicted to

the benzos. I had tried to convince him not to screw around with

benzos, but he did not listen. And then he ran out of money, and began

withdrawing hard.

He and I had this little unspoken rule that a closed bedroom door means

Do Not Disturb, and his door was closed on the day of the crisis. I was

in my room, in the process of going to sleep, when his brother showed up

at the door, unexpected. He was in the neighborhood, so he stopped by

to visit his brother. I answered the door when I heard him knock, and I

knocked on the roommate's door to announce his brother.

Shortly thereafter, he (roommate) called out to me, standing in the

doorway to my room with his brother, and he announced that he was

thinking of killing himself that night, seriously, and that his brother

was taking him to the hospital.

They put him on an IV to help wash the drugs from his system, and were

quite amazed at how many prescription drugs he had managed to get ahold

of. When you live as close to Mexico as we did, you can get anything

you want.

That was the beginning of the end of our long-standing roommate

relationship. We had met in college, in the dorm, and swapped

roommates, so he and I were in the same dorm room. Rather than go

through official channels to change roommates, my former roommate and

new roommate simply switched. It's easier to say " I'm sorry " than to

get permission... the dorm's RC (residence counselor, the paid person

who oversaw the RAs (residence advisors, unpaid students who got free

room and board as consideration for policing their respective dorm

wings) was shocked, and began to lecture us on how we were supposed to

do this... then he realized that it was done, we were all happy, and

this was a non-issue.

Anyway, we remained roommates when we moved to San Dimas, then to

Hesperia, then San Bernardino, then Upland, then Redlands. Redlands was

where we lived when all of this happened.

My roommate announced, the next time he visited our apartment (after

having been discharged from the hospital), that he was moving back in

with his parents, while they were to help him get back on his feet.

I saw that as a cue that this chapter in my life had ended. He had been

my roommate for virtually all of my time in California, and even though

the first part of my California residency had been wonderful, most of it

consisted of grinding depression and self-loathing. I decided it was

time to move to another state, and I picked Tucson, Arizona, a city I

had never visited (for no other reason than it had a climate similar to

that in Redlands).

After moving here, I sought the only kind of job I really wanted to do,

which was newspaper delivery. I had been tossing papers for a few years

in California, and it was the natural choice in Arizona. I did that for

a few years, when in June 2000, when delivering the Sunday New York

Times, one of the slickery Sunday magazines slipped out, revealing the

headline " The little professor syndrome. " I had been called that

(snidely, by my brother's allergist's assistant), and so I read the

article in one of the spare papers I had when the route was done.

That was when I discovered the autism spectrum.

I knew instantly that I had found the source of my weirdness. The

article contained descriptions of several kids with AS, and it was so

much like me, that there was really no doubt at all that this was me.

For the first few months, it was kind of like a novelty... I knew why I

was different, but it was not that important to me. I searched online

and found a few articles on the subject, and that was that. At first, I

was kind of amazed that I had a form of autism; I instantly thought

about how once I had said that I wished I was autistic, because I wanted

to live in my own little world (given that the real world treated me so

badly). I had this idea that autistics were daydreaming 24 hours a day,

like they were on their own little Matrix, living lives in their own

heads, not realizing that it was a waking dream. That was my

interpretation of my mother's description of autistics living " in their

own little world. " I thought that sounded like a hell of an idea... it

never once occurred to me that the reason I wanted to live in my own

little world was because I already was autistic.

After a few months, a semi-friend acquaintance (a married female that

seemed to want to have an affair with me, which I rejected... I was

attracted to her, but I was not willing to share) set me up with her

perpetually looking-for-someone female friend. It was to be a casual

meeting, with my semi-friend and her husband, my " date, " and myself all

meeting at semi-friend's apartment, and just hanging out.

I thought it went well. It did not occur to me that it had gone badly

until the semi-friend apologized to me for how bad it was. She was

shocked that I did not think it went badly. I had not picked up on that

even when both of the females went off to the bedroom to play

together... the bedroom was full of toys, and they were in there playing

by themselves (yes, these were adults).

I immediately flashed to the things I had read about AS, and how similar

some of them were to the experience of that night. I was engaged in a

way that I had not been before. That was when I searched the net for an

email list about AS (I had been participating in email lists since the

mid 1990s; I just assumed that there were probably a bunch of them, and

there were). I joined that one, and was on for about two weeks before

the listowner chastized me for being too pro-autistic in my views, and

not casting NTs as getting to define the way people should be (my

interpretation; I am sure that hers would differ a bit). I fired a few

parting shots and quit, and was quickly invited to another AS list owned

by one of the members of the first one. That list, in turn, was the

immediate parent to this list, which I created after that previous

listowner declared anti-US comments, including reposting from elsewhere,

off limits, in the days following 9-11-01. I did not like that, so

after repeated pleas to change that policy were denied, I formed the

Treehouse.

What this probably painfully long-winded novella was intended to

illustrate, in context, was that it did not matter what the label was,

or if there was one. I liked me, and the name for what I was did not

matter. I had accepted that this is how I would always be already, so

finding that it was a function of an incurable disorder was no problem.

I liked it, really; I don't want to be any other way.

One thing that instantly stood out was that a lot of my new-found online

community did not share the positive view I had of my new diagnosis. I

saw it as an explanation for a " me " that I really liked, so to me, it

was a gift. I immediately began to write on the topic, and one of my

first essays on that topic (originally written as a post on the second

AS list I had joined) is now on my site.

Wow, my carpal tunnel seems to be acting up. I wonder why that could be

<g>... couldn't be that I wrote all of that on a laptop sitting in front

of me on my futon opened into a bed... kind of a bad angle for the old

wrists.

> It's why social anxiety disorder and avoidant personality disorder

> and some features of OCD are easy for me to " accept " and I'm never in

> denial about them (and I meet every single criteria for SAD & AvPD &

> some for OCD) --because they're " curable " with a lot of hard work.

> But it's hard for me to accept that I might have something that, even

> if I were to get over my AvPD, SAD & OCD, I would still have

> problems making friends.

That is not necesarily so. Knowing what the problem has been can help

you devise workaround strategies. For one, you can possibly find a

kindred spirit in someone else that is not normal. It need not be

someone with the same condition; anyone that is out of the mainstream

group can probably identify with a lot of your issues.

In addition, there are various support and special-interest groups in

various areas, and you may be able to find people there.

> I've always wanted to have people in my life without constant

> worrrying they were going to dump me, etc.

Obviously, you can never be sure about that. The only way to avoid the

pain of rejection is to totally isolate yourself from situations where

people have that option. That means having no friends, no significant

other, no job, and living like a hermit. (Hey-- I resemble that

remark). I quote The Outfield, in their song " Through the Years: " " If

you want to enjoy the laughter, you've got to ignore the fears... "

I took that line slightly out of context, since the song was about

romantic love, not friendship per se, but the principle remains. The

trick is not to find someone that absolutely will not reject you, no

matter what... I do not think you would really want to be friends with

someone like that. The trick, I think, is to be able to go forward and

let yourself trust enough to have a friend, knowing full well that there

is the possibility of rejection. If you demand certainty that the

person won't reject you before opening up, you're probably not going to

have any friends.

> For instance, one of the

> reasons I haven't dated in over 10 years (besides the fact that I'm

> kind of ugly-looking)

Are you really, or is that just low self-image? I am not sure if my own

perception of my ugliness is a remnant of the old depression, or if it

is accurate. I avoid looking in the mirror... my own visage repulses me.

> is that I'm afraid to start for fear I'll fall

> in love with the guy but be an inadequate partner for him for various

> reasons, and he'll dump me. I'm also afraid of being " settled for " ,

> and of being chosen by an abusive person because I have low

> self-esteem.

Maybe he will, but if you make the decision for a potential mate,

rejecting others before they can reject you, no one will ever have a

chance to not reject you. I can understand those fears... I have had

them too.

> But on the other hand, I'm lazy as well, and afraid if I do all that

> hard work to change, that I may end up as a socially confident and

> non-avoidant, but still disliked and friendless person.

That may happen, but if you do avoid everyone for fear of rejection, the

end result of being disliked and friendless is certain. I am certainly

no expert in friendships; I have not had many, and I don't have any

close ones now (as I mentioned in a recent post... I think I sent that

just before you re-joined; it is in the archive under the title

" interesting self-observation, " if I recall. It's just that the odds of

successful friendship are nil if you avoid putting yourself out there

for fear of rejection.

> I'm not sure what you mean by NT " verbal shorthand " . I don't think I

> do it. It's probably why I have problems communicating, because I

> don't know how to do this. Do you have any examples of this you

> could give?

Not really. I can't really understand how NTs can think in such vague

terms, so I can't even think of a good example. NTs tend to speak in

ways that leave me struggling to figure out what they mean. I have

analogized it as describing a mountain range by giving the elevation of

three of the peaks. I need a complete description of the whole mountain

range to be able to conceptualize it... NTs seem to only need the " gist "

of things.

> I see what you mean about having a " cheat sheet " . It does seem kind

> of like that when you think about it, doesn't it. But on the other

> hand, AS & autism is harder to diagnose in girls & particularly in

> middle-aged women. I have no doubt learned alot of coping skills and

> " pretending to be normal " .

has already posted a decent counterpoint to that point of mine.

> I go in the doctor's office, and there's

> no athletic feat to perform so he could see my clumsiness, for

> instance. My eye contact seems fairly normal, especially for someone

> with social anxiety. I honestly thnk if they'd been diagnosing AS

> when I was about 5 or 6, I'd have been diagnosed with no problem! Or

> if my parents were still living and were able to come with me to the

> doctor and tell exactly what I was like as a child, or if there was

> anyone else who would have known me then. I really do believe that

> clinicians have trouble diagnosing AS in older women unless they

> exhibit " classic " AS or autistic traits.

When my 37 year old female friend was diagnosed, it was done on the

basis of her story. She was not exhibiting any ASD traits other than a

lack of eye contact, but her story of her life experiences, and her

answers to the questions he asked, was sufficient. That was also the

case for the diagnoses I have (I have stacked up several by now; four of

AS and one of HFA). I thought about bringing a checklist of traits, but

I did not; the doctors evaluating me were able to pick up on the things

I said and ask the necessary questions. I didn't have to volunteer the

information, or make my case; the doctors knew what they were looking

for, and they knew where to look for it.

It seems to me that if a doctor is competent in recognizing AS in a

female your age, s/he would be able to get to that without a

checklist... even to the point where a doctor that has that experience

in that way would hopefully be able to figure it out even if a client

were to answer wrong in a situation such that listed. This is

based on my own experience, though, as well as the thought process that

goes on in my head when someone ponders whether they are on the spectrum

(and the process the doctor used to diagnose my female friend, which

took place while I was in the room). I cannot exclude the possibility

of what wrote, though, other than to iterate my use of the word

" competent. " It seems to me that a competent doctor that knows about AS

would be able to drill down to the essence of the condition without a

list, even if the client answers question in unexpected ways, whereas an

incompetent doctor cannot be trusted to make the AS diagnosis even when

it is completely obvious.

> Plus I'm afraid that if I come to believe I don't have it, someone

> along the line will think I do and tell me about it. I know that

> sounds silly, but it is a worry of mine -- some future friend or

> boyfriend will give me an article about AS or the AQ test or

> something, and ask if I think it might apply to me, and I'll have to

> start the whole process over again or else be classed as being in

> " denial " .

I don't know how to answer that. That's a made up situation-- it did

not happen, and to worry about something like that is... I don't know

what it is, but it doesn't seem useful. This one looks like a neon

flashing sign with " anxiety problem " on it to me. For one thing, who

cares what someone else thinks? You are what you are, whether that is

someone with AS or not, and it is of no consequence what someone may

think. That would be like me worrying that some future person would

declare that I cannot be autistic, because I present more Aspergerish in

many ways. I know I have put sufficient thought into it, and that I

have had some big autism expert-type people do a full-on evaluation, and

that's all I need.

Even if I was concerned what some hypothetical future person thought

about my diagnosis, I would have to conclude that unless that person was

an autism expert who had interviewed my mom about my early history for

two hours, doing the ADI (autism diagnostic interview), then interviewed

me for 45 minutes about general traits and such, then had me do the ADOS

(Autism Diagnostic Observation Schedule) for another hour and a half or

so, that they lack sufficient evidence to be able to dispute the issue.

In your case, if you were to accept the word of the doctor(s) that have

evaluated you thus far, and it did come to pass that a future boyfriend

suggested the possibility, you could simply say that you have been

evaluated for it, and the doc said you don't have it. It makes no more

sense to get all worried about that (when you have not even met the

hypothetical guy yet) than it does to get worked up over the possibility

that he will be so afraid of spiders that, if he sees one in the

bathroom, he will go shreiking and run out the door and hide in his

car. You can invent endless hypothetical things that would be

unpleasant for you; having someone insist you have AS when you have

already decided you do not have it is not is not even a particularly bad

thing.

It occurred to me that you seemed to assume an adversarial component to

the prospect of a potential mate thinking you have AS that would

probably not be there. You seem worried that you would be hard pressed

to defend against someone that thought you may have AS if he suggested

it, as if it was some sort of attack. If it did come to pass, it would

more likely not be something you have to defend against, but something

that would allow you and he to discuss the matter openly. He would

likely not be using the idea as an attack.

> I keep reading about AS people being brought to the

> doctors by their spouses and being in denial about it-- Meyer

> even wrote about it, and he's an Aspie himself.

Hoo boy... can of worms right there. Suffice it to say that I don't put

a great deal of trust in things he says.

Some people may be in denial about that, or any number of other

things... that is far from the case with you. You've been agonizing

about this issue for a very long time; if you finally decided that you

do not have AS, that would not be denial (especially since all of the

evaluations you have had thus far show the same thing, as well as the

test scores you reported on the AQ and such, et cetera). You should not

let the possibility that someone could accuse you of being in denial

about it play a role (especially since it has not happened yet). You

could think of any number of things that people could accuse you of

doing/thinking, and if you were to act on each of them, you might be

doing a lot of unpleasant things.

> Thanks again and sorry I'm so neurotic about this!!

Hmmm... naah, too easy <g>

[Guest guest]

Kaiden Fox wrote:

> RESULTS: If your heart starts beating faster, your skin becomes

> flush, your fine motor control lessens and you feel somewhat sedated,

> you're opiod reactors are reacting to caesin just like an autistic

> brain should.

That would not be a reliable indicator at all. Not everyone that had

such a response would be autistic, and not all autistics have

sensitivity to casein.

[Guest guest]

I would never have gotten a handle on either my Fibromyalgia (which is

also neurological like the ASD and OCD and AS and mental illness... ) or

my issue with sensroy, with out going over detailed lists with

prefessional who respect my self knowledge, and need to look for answers

(even tho with my FMS not many ansewrs are forthcoming.)

to me that losing track of things is a function of the ADD type issues

many of us have too (regardless of dx!) I am extrernally refernced to

the Dr, instead of my own needs....

it was only after I started keeping track of it all on paper (manytimes

lists that I write notes on all thru the interview but I never need to

look at again!) that I really felt that I was empowered in my own

health management... being scattered really is not the way to get help

from any professional, and to me the fact you need a list, makes you

more likely to be ASD... or some other version of similar issues...

a rose by any other name....

dani

alfamanda wrote:

>

>

> > I really dislike that criterion of autism and AS, the one that says

> > " Failure to develop friendships appropriate to developmental level "

> > or whatever is the exact wording. There are a lot of reasons that

> > people can fail to develop friendships as kids.

>

> I also dislike that criterion because a whole lot of autistic people

> -- any who are not actively avoiding friendship, which is a lot more

> than many people assume -- can develop friendships as children when

> given the right people to be friends with and the right environment.

>

> > I have been assessed for AS/autism a number of times, and I have

> > never felt the need to make a list (like a cheat sheet) of traits,

> > as if I was pleading a case before a judge. Maybe I would, if I

> > were looking for a diagnosis, but had not been able to get one in

> > previous attempts, but if I were looking for an honest assessment,

> > I would find a shrink that hopefully can be trusted to give a

> > reasonably accurate assessment, and let him/her guide the process.

> > The trick is finding one that can be trusted to make an accurate

> > diagnosis.

>

> Actually, you may not know this, but a lot of people give the advice,

> particularly to autistic people, that when going to a doctor you

> *should* have a list of traits in hand, and if you're going to a

> doctor about an autism-related diagnosis you should be able to tell

> them why you think you might be autistic and that a list can be

> helpful for this. I have seen this advice enough that I certainly

> would not hold it against someone's diagnosis for actually following

> it, whether they turned out to be autistic or not. (In fact, it can

> be a very autistic way of handling things.)

>

> I have personally found that when I don't make a list, I forget

> things, sometimes important things. I cannot recall information on

> demand, especially in a situation having anything to do with a doctor.

> My surgeon loved me a few months ago because I, unlike most patients,

> had listed off everything that could conceivably go wrong (that would

> be specific to me) and what to do about it, knowing that I would not

> remember what to write on a form in his office. If I were undiagnosed

> and going for a diagnosis, I would apply the same strategy.

>

> It is especially common for a subgroup of autistic people to use more

> of an AI-script approach to conversation than a communication-based

> one, if we don't watch ourselves really carefully. I have a friend

> whose therapist asked her, " Do you have any learning disabilities? "

> She said " No, " even though she did have learning disabilities, just

> because she couldn't think that fast and that was the way of

> responding she had learned over time (in part to prevent getting hit

> for not answering fast enough). For those of us who, like her, have

> trouble coming up with things on demand and may even say the opposite

> like that, lists like that can be very important, ensuring that we

> don't mess up and claim we didn't have a problem that we did or that

> we did have a problem that we didn't.

>

> I certainly could never remember my entire relevant history sitting

> here, much less in a doctor's office. If I simply let a diagnostician

> lead the whole process, I could end up convincing them that I had a

> whole lot of social skills as a child just by answering questions the

> wrong way or being unable to provide supporting data. I might also,

> as I *have* done, do the " yes/no " thing in DISASTROUS ways that get me

> all kinds of inappropriate labels (the original claim that I

> hallucinated came from me " yessing " some intake guy at a psych ward at

> the wrong time, and some later claims about other conditions

> undoubtedly came from yessing and noing at the wrong times and then

> providing plausible ELIZA-like dialogue when questioned in certain

> ways). That is a fact of some kinds of autistic communication and

> also of some kinds of autistic recall.

>

> I do understand the points you're making, and you might be right, but

> I disagree with the idea that making lists (I don't think they're

> cheating) is a factor against being autistic (I can see a lot of

> reasons it would be an indicator that either a person is autistic or

> is following advice I've seen aimed at autistics).

>

>

>

>

> ------------------------------------------------------------------------

>

[Guest guest]

Kaiden wrote:

> Slam down a pint of eggnog.

If I drank that much eggnog at once I would be in big trouble! I had a small

glass of " gourmet " eggnog a few days ago and found myself in the bathroom

with severe cramps, feeling hot and sweaty and feeling like I was going to

pass out. Kept yelling and DH came in and declared that my reaction was not

normal and I should see a doctor. Yeah, just what I needed to hear in

between cramps and feeling like I am going to faint. :-/

I grabbed him around the waist so if I did faint I woudn't fall on the

floor. He told me afterwards that he can't stand to see me suffer like that.

I felt weak and got cold chills after the attack was over.

Take care,

Gail :-)

[Guest guest]

This message from Kaiden Fox arched across the cosmos:

>Well, there is one way to chemically test it, and it's the perfect time of

>year.

>

>Slam down a pint of eggnog.

Keep in mind that not all auties have our reaction to casein -- just like

not all of us have a reaction to gluten/wheat products. So it's not quite

an errorproof test.

Oh, and for those that aren't into egg-nog, you can always follow my

favorite recipe:

Make 1/2 mug of either powdered chai or hot chocolate.

Fill other 1/2 of mug with Heavy Whipping Cream. (I find that

half-and-half or even whole milk doesn't quite do the trick for me.)

Is there a stronger form of cream than " heavy whipping " btw? That's what I

use all the time at home for the " casein reaction " that I get (which is so

powerful that there's no way NTs could be having it and not be arrested for

drunk-driving or something) but I'd like to get my hands on something even

stronger if I can.

DeGraf ~*~ http://www.sonic.net/mustang/moggy

[Guest guest]

Hi Norah,

I don't think you are being neurotic first of all... still searching

sure... don't worry! (I am 39 not dx'd YET with ASD - me son is dx'd

with Pdd-NOS and now of course they want to add ADHD - I score on both,

althought I have duifferent communcation issues that , he has

semantic pragmatic disorder but I have been talking a blue streak since

I was 1yr old.)

but listen, I did read one article (sorry can't place it now) about a

research that was done by questionairres in family and extended family

and that the ressearch foudn tendenices in the women, but the research

suggested that " woman had the lesser variant of the disorder " .

as a daughter, sister, lover and mother of boys and men with ASD/AS I

still don't knwo whether that (if it's true) means that women get it

less severely than men, OR if it is simply socialization? or something

else?

and of course I know one reason you can't get a dx my dear... you're too

articulate by half, and really, no psychiatrist in their right mind

would be easily convinced to dx you with a " developlemental disabilty "

UNLESS! they are in the habit of identifying these issues in high

functioning adults...! unless they are open minded to letting go of

slotting you into a mental illness dx because you are a woman... don't

forget you are dealin gwitha medical system where women are still sent

home with valium when they should be treated for heart attacks !

I believe I am ASD, but I have depression, mental anxiety disorde,

chronic generalized anxiety, SAD, ADHD, Fibrmyaliga, PMS, pre menopause,

and sometimes a hell of a lot of rage!

I have a friend who has everythign that I have plus

cutting/selfmutilation and they call it borderline personailty disorder

( I figured they didn't like her that day!)

I could go on... but here the thing about acceptance and gettinga dx...

for me, when I met some people (go to naturallyautistic.com and look

around) who were like me, but identified as autistic, I was blown away,

and really, I felt, that for the first time in my life the answers made

sense when the questions I asked were asked with a new lense...

even now I more identify with " people who have invisible or mainly

invisible neurological difficulties that are unpredcitable and somewhat

simialr to mine " and I find that is making me feel less alone, and more

confortable with myself.

dani

Norah Willett wrote:

> ,

>

> Thanks so much for your post.

>

> Yes, that's exactly what I'm looking for--a reason why I've been unable to

> have friends and a normal life, have lost jobs (though not recently),

> and so

> on, and that is something I could change!! It's why social anxiety

> disorder

> and avoidant personality disorder and some features of OCD are easy for me

> to " accept " and I'm never in denial about them (and I meet every single

> criteria for SAD & AvPD & some for OCD) --because they're " curable " with a

> lot of hard work. But it's hard for me to accept that I might have

> something that, even if I were to get over my AvPD, SAD & OCD, I would

> still

> have problems making friends.

>

> I've always wanted to have people in my life without constant

> worrrying they

> were going to dump me, etc. For instance, one of the reasons I haven't

> dated in over 10 years (besides the fact that I'm kind of ugly-looking) is

> that I'm afraid to start for fear I'll fall in love with the guy but be an

> inadequate partner for him for various reasons, and he'll dump me.

> I'm also

> afraid of being " settled for " , and of being chosen by an abusive person

> because I have low self-esteem.

>

> But on the other hand, I'm lazy as well, and afraid if I do all that hard

> work to change, that I may end up as a socially confident and

> non-avoidant,

> but still disliked and friendless person.

>

> I agree that that AS criteria about " failure to maintain peer

> relationships "

> or however it goes can be misleading, because that can come for a

> variety of

> reasons. Someone with severe social anxiety might fail to maintain peer

> relationships. Someone with depression or schizophrenia might also not

> maintain peer relationship, but it would be for a different reason that it

> would be in an autist or Aspie.

>

> But one thing I've noticed on the various forums & lists for AS I've been

> on, is a lot of Aspies who would really like to be able to make

> friends and

> have social things take less effort and thought than they do for an Aspie,

> and this I can relate to. This is one of the reasons why I continue to

> think I must have AS. I also read parents' accounts of their children's

> coming home crying after yet another rejection or bullying or teasing, and

> being sad that they didn't get invited to a party or their former " friend "

> ran away from them at recess. These are all experiences I have had as

> well.

>

> I also do believe if I could accept myself better, I would better be

> able to

> accept whatever label applies to me, even if it was something

> permanent like

> AS or autism.

>

> I'm not sure what you mean by NT " verbal shorthand " . I don't think I

> do it.

> It's probably why I have problems communicating, because I don't know

> how to

> do this. Do you have any examples of this you could give?

>

> I see what you mean about having a " cheat sheet " . It does seem kind

> of like

> that when you think about it, doesn't it. But on the other hand, AS &

> autism is harder to diagnose in girls & particularly in middle-aged women.

> I have no doubt learned alot of coping skills and " pretending to be

> normal " .

> I go in the doctor's office, and there's no athletic feat to perform so he

> could see my clumsiness, for instance. My eye contact seems fairly

> normal,

> especially for someone with social anxiety. I honestly thnk if they'd

> been

> diagnosing AS when I was about 5 or 6, I'd have been diagnosed with no

> problem! Or if my parents were still living and were able to come with me

> to the doctor and tell exactly what I was like as a child, or if there was

> anyone else who would have known me then. I really do believe that

> clinicians have trouble diagnosing AS in older women unless they exhibit

> " classic " AS or autistic traits. I've read about this as well. It's

> another thing that keeps me believing I probably do have AS.

>

> Plus I'm afraid that if I come to believe I don't have it, someone

> along the

> line will think I do and tell me about it. I know that sounds silly,

> but it

> is a worry of mine -- some future friend or boyfriend will give me an

> article about AS or the AQ test or something, and ask if I think it might

> apply to me, and I'll have to start the whole process over again or

> else be

> classed as being in " denial " . I keep reading about AS people being

> brought

> to the doctors by their spouses and being in denial about it-- Meyer

> even wrote about it, and he's an Aspie himself.

>

> Thanks again and sorry I'm so neurotic about this!!

>

> Norah

>

>

>

> >

> > Reply-To: AutisticSpectrumTreeHouse

> > Date: Fri, 26 Dec 2003 11:01:31 -0700

> > To: AutisticSpectrumTreeHouse

> > Subject: Re: Accepting my AS

> >

> > It seems to me that your perseveration with having AS... wanting it to

> > the point that you do not accept the statements from the professionals

> > that say you do not have it, but also not wanting it (as you remarked

> > above), has to do with a search for a singular thing that you can point

> > to, something that will describe why things have been hard for you where

> > they are so easy for others. You want something to identify the source

> > of the problems (which is understandable, for sure), but you don't want

> > it to be something that is permanent. I think you're possibly looking

> > more to change what is " wrong " with you than to accept it. What do you

> > think?

> >

> >

>

>

>

[Guest guest]

> > RESULTS: If your heart starts beating faster, your skin becomes

> > flush, your fine motor control lessens and you feel somewhat

> > sedated, you're opiod reactors are reacting to caesin just like an

> > autistic brain should.

> That would not be a reliable indicator at all. Not everyone that had

> such a response would be autistic, and not all autistics have

> sensitivity to casein.

Not only that, but not all reactions to eggnog-like substances are

reactions to casein. The fat content in a lot of milk products was

more than enough to cause a very unpleasant and

similar-to-described-above reaction in me before I had my gallbladder

out, and I know someone who had similar reactions to eggnog itself not

*too* long before getting *her* gallbladder out (and who is not

casein-sensitive). Plus, even if it were something in the milk

besides fat, there is also lactose and probably other chemicals in

milk as well.

[Guest guest]

> Is there a stronger form of cream than " heavy whipping " btw? That's

> what I use all the time at home for the " casein reaction " that I get

> (which is so powerful that there's no way NTs could be having it and

> not be arrested for drunk-driving or something) but I'd like to get

> my hands on something even stronger if I can.

I hope you're absolutely sure it's the casein in that whipping cream

doing that to you. (You might be, I don't know.) Heavy whipping

cream is a good example of what I was describing to in my last

post -- it would have (and did, actually, the time I made something

with it) nearly knocked me out a few months ago, made me completely

woozy, klutzy, spacey, and out of it. But it was the fat, not the casein.

[Guest guest]

Hey Kaiden... do all autistics have this reaction to casein? just

wondering cause I can tolerate a lot of dairy... it doesn't make me

hallucinate like some other autistcis acqunaintance of mine...

?

dani

Kaiden Fox wrote:

> Well, there is one way to chemically test it, and it's the perfect time of

> year.

>

> Slam down a pint of eggnog.

>

> To avoid giving a " spoiler " that may produce a Placebo effect, I'll

> put the

> standard results at the very bottom of this post.

>

>

>

> Accepting my AS

>

>

> > I hate to always bring this up all the time, everywhere I am that people

> > know about autism, but I'm still having a problem with this. If you

> want

> to

> > kick me off the list over it, it's OK.

> >

> > Did anyone else have a hard time accepting their autism or AS, or

> did they

> > first think it was somehow a " bad " thing to have? I was starting to

> accept

> > it, now I'm thinking " oh it can't be " . If I did get formally diagnosed

> > would that help, I wonder? I have had several doctors tell me I don't

> have

> > it, so it's easy to believe them sometimes. But because I'm a

> woman, have

> > no parents who were around to tell what I was really like as a kid,

> don't

> > remember everything I did back then, and many of my traits could be

> > explained by anxiety disorders, I think it's thrown them off the track.

> > Plus I had extreme overprotection due to being an only child and my dad

> > having an irrational fear of my getting colds and infections, so I

> didn't

> > even get much chance to play with kids until I started school, then

> I was

> > kept in from recess a lot, again because of my dad's fears--the doctors

> > think that this contributed to my being socially clueless as a

> child, and

> > that the teasing & rejection I got as a result caused me to develop

> social

> > anxiety disorder & eventually, avoidant personality disorder.

> >

> > I think some doctors really don't like to diagnose AS or autism if they

> > think there could be any other explanation, especially in adults.

> >

> > And when I saw these doctors, even though I was expecting an AS

> diagnosis,

> I

> > really didn't " want " it. So when there was something in my childhood

> that

> > could be construed either as autistic or a normal child, such as

> collecting

> > stamps & coins, I quickly agreed my interest was probably normal.

> Now I'm

> > remembering it probably was a little more intense than normal. And it

> seems

> > to me that even if NT kids are overprotected, when they do get to play

> with

> > kids they instinctively know what to do. Oh they may be shy or even

> > socially anxious, but they usually have a couple friends. I rarely had

> any,

> > and even if I did have a friend it'd end in them running away from me or

> > dropping me very quickly.

> >

> > And I have always been physically clumsy. That's not caused by

> > overprotection or social anxiety. I'm not always bumping into

> things, but

> I

> > still am clumsier and not very graceful. My dad had thought it was

> because

> > grew too fast and had poor eyesight which was not corrected

> properly, but

> I

> > doubt it. (See how I'm interjectng things that could account for my

> > problems? This is what I do with the doctors, and I think it's

> influenced

> > them somehow.)

> >

> > I'm supposed to see the last doctor I saw about this again on January 7,

> and

> > am making up a list of my AS traits. I've tried to remove ones that

> could

> > be explained by social anxiety disorder, since the other autism doctor I

> saw

> > took a list I'd given him and said most of the things on it were things

> that

> > a socially anxious person would write.

> >

> > But how can I maintain a more positive attitude about autism and

> that it's

> > OK to have it? I don't seem to have the postive AS or autism traits

> most

> of

> > you have--I'm not creative, for one thing. I'm just afraid I'll be

> totally

> > in denial again when I see the doctor, and will just tell him " oh, I've

> been

> > having a lot of social anxiety and need to get back on meds so I can

> work

> on

> > it " and totally ignore the AS list. Also there's not really much

> time to

> > go over it in the session--should I mail it to him beforehand?

> >

> > Thanks

> > Norah

> >

> >

> >

> >

> >

> >

[Guest guest]

> do all autistics have this reaction to casein? just

> wondering cause I can tolerate a lot of dairy... it doesn't make

> me hallucinate like some other autistcis acqunaintance of mine...

No, not all autistics do. It's one of those things where there's

probably a higher-than-usual incidence of reactions, but not a

universal one. I know plenty of autistics who don't react to casein

at all.

[Guest guest]

I couldn't have said it better myself! - that is what I was talking

about Nora

dani

Klein wrote:

> my new diagnosis. I saw it as an explanation for a " me " that I really

> liked, so to me, it

> was a gift.

[Guest guest]

once said: " That would be like me worrying that some future person

would

declare that I cannot be autistic, because I present more Aspergerish in

many ways. I know I have put sufficient thought into it, and that I

have had some big autism expert-type people do a full-on evaluation, and

that's all I need. "

I've read somewhere, I think online but perhaps in an offline book, that a

child with high functioning autism will morph into an adult with Asperger's

syndrome. That the idea of " clinical significant " language delay, present

in autism but not in Asperger's, stops being an issue once language is

more-or-less mastered. If you can pass a Turing Test, you've got

Asperger's, even if you didn't say your first words until you were six years

old.

Autism is difficult to diagnose, because by definition it's a childhood

disorder. I go between looking at autism and Asperger's as the same thing,

or more-or-less the same thing, depending on the sort of day I'm having. It

reminds me of what Hyatt wrote in " Tree of Lies, " " In the

mornings, I'm an optimist. In the afternoons I'm a pessimest. In the

evenings, I'm a realist. When I'm strong, I don't need a label. "

While autism discribes an objective reality, it also connotes a subjective

reality, but in the end it's just a word like any other word.

[Guest guest]

Yeah, that's the result you're looking for. Gail Pennington just scored

very high on the NQ (nog-quotient) test, somewhere between the Intoxicated

and Incapacitated range.

Eggnog:vodka::milk:beer

Re: Accepting my AS

> Kaiden wrote:

> > Slam down a pint of eggnog.

>

> If I drank that much eggnog at once I would be in big trouble! I had a

small

> glass of " gourmet " eggnog a few days ago and found myself in the bathroom

> with severe cramps, feeling hot and sweaty and feeling like I was going to

> pass out. Kept yelling and DH came in and declared that my reaction was

not

> normal and I should see a doctor. Yeah, just what I needed to hear in

> between cramps and feeling like I am going to faint. :-/

>

> I grabbed him around the waist so if I did faint I woudn't fall on the

> floor. He told me afterwards that he can't stand to see me suffer like

that.

> I felt weak and got cold chills after the attack was over.

>

> Take care,

> Gail :-)

>

>

>

>

>

>

[Guest guest]

Majority? Preponderance?

OK, so there's no correspondence, but there's some correlation, isn't there?

Re: Accepting my AS

> Kaiden Fox wrote:

>

> > RESULTS: If your heart starts beating faster, your skin becomes

> > flush, your fine motor control lessens and you feel somewhat sedated,

> > you're opiod reactors are reacting to caesin just like an autistic

> > brain should.

>

> That would not be a reliable indicator at all. Not everyone that had

> such a response would be autistic, and not all autistics have

> sensitivity to casein.

>

>

>

>

>

>

>

>

[Guest guest]

> I've read somewhere, I think online but perhaps in an offline book, that a

> child with high functioning autism will morph into an adult with Asperger's

> syndrome. That the idea of " clinical significant " language delay, present

> in autism but not in Asperger's, stops being an issue once language is

> more-or-less mastered. If you can pass a Turing Test, you've got

> Asperger's, even if you didn't say your first words until you were six years

> old.

I spoke first not long before I was five. I gained speech, appeared

retarded initially, then appeared gifted. Then I wasn't autistic anymore.

And then I became autistic again. And now I'm losing some of the speech I

had when I was growing up.

That's kind of why I think the language thing to build categories of

different kinds of autism doesn't make sense. I don't fit any of them.

--