DX'd as a kid but now not sure

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hi all, i am wondering if i could get some advice. When i was a kid (grade 3?) i was diagnosed with AS but i didn't find this out until a few years ago. i have most of the problems that come with AS (problems fitting in at school, uncomfortable around large groups of ppl, repetitive and obsessive behavior, etc.) however most NT's don't believe me or think im joking when i tell them i have AS. i diddnt notice most of my repetitive behavior (rocking or tapping my foot) until i got to know a few autisic ppl and noticed we acted very alike.

it is getting to the point where i am not sure any more about my AS. could i be just a wierd NT or what? I would apreciate some advice thx

Lot of aspies get that. There have been threads here about where people didn't believe they had it or they are shocked.

Count me in on that one.
I was shocked.

What is so shameful about it, that people want to keep it a secret from their children?

Perhaps some people are uncomfortable about their own foibles/philosophies/quirks becoming a diagnosis and being reflected in their own children?


Which is more helpful in the long run?

Admitting the child doesn't meet arbitrary "social standards" or being in denial?


I have absolutely no idea.

When I was little, it was a "there's something wrong with you"...keep it "hush hush" type thing.

Fear probably has something to do with it too.


It's ingenious: make the issue so secret, nebulous, negative, "mysterious", "socially inappropriate" and exclusive, that you're not allowed to talk about it with anyone.

That way, you become even more isolated by the "help" you receive and everyone else is even less educated about the issue.

Actually, I think it would be good if there was a tab in the diagnostic menu that read:

"Was assessed as a child, but not sure now."

In the Profile section of this site.


Because the "Not sure if I have it or not." technically isn't true for me, but it's the closest to the "truth" I can select.

i was officially DX'd from the assessment but a few people are saying things like i don't have the look of an aspie or that i was "misdiagnosed". is it possible that i am not aspie and just have a few quirks or do i need to ignore these ppl?

Probably just ignore them. Why do you need to broadcast your condition to them?

Mine isn't as obvious as some. I don't have any real sensory issues and I don't melt down in public, nor do I really get anxiety from just being in public. But anyone who knows anything about autism will probably spot me easily if they just watch me for a while. The way I stim and interact with people is pretty obvious, particularly in a noisy room where I have to filter out other distractions.

It's not shameful, and I don't think that any supportive parent thinks it's shameful, either. Most likely they just wanted to give their child every opportunity that a NT person would have and not discriminate or be discriminated against because of a diagnosis. If the child is able to successfully adapt and cope, why do they need to be encumbered by a label?

I feel very strongly about this because I was that kid. My parents stuck up for me and refused me to be tested, insisting that I be given the same opportunities as everyone else. They knew I was very different, but they left it at that because I was successful at adapting and coping. If things had gone differently, I am convinced I would have a lot more problems than I do today.

Sanchasmcdude, if it makes you feel any better, when I told some of my old school friends that I suspected I had some form of AS, none of them believed me either. I didn't fit in their mind of what someone with AS would look like.

My advice is to be yourself and not worry about what others think. I also wouldn't get hung up on whether you are "truly an Aspie" (if there is any such thing) or just a "weird NT." You probably have both NT and AS traits, and there is absolutely nothing wrong with that.

Of-course-it-is-possible.--However,-nothing-you've-stated-in-your-posts-is-cause-to-deem-it-likely.

Most-people-do-not-have-a-clue-about-AS.--Two-psychiatrists-insisted-I-did-not-have-AS,-neither-had-any-AS-specific-training-and-between-them-they'd-met-a-grand-total-of-2-people-with-AS,-both-children.--None-of-this-made-them-shy-about-offering-their-unfounded-opinions.--Meanwhile,-a-child-psychologist-with-no-experience-working-with-adults-felt-it-was-plausible-I-had-AS.--An-AS-specialist-who-routinely-works-with-adults-with-AS-had-no-difficulty-deciding-that-I-certainly-had-AS-and-rather-obviously-so.

Plenty-of-people-think-they-know-about-AS-but-actually-are-just-ignorant.--Unless-an-AS-specialist-with-experience-with-your-age-group-is-saying-these-things,-you-probably-ought-to-ignore-it.

Fair enough. I'm familiar with this point of view.
Not having a diagnosis or label means that the child doesn't have to endure the comments of ignorant or condescending people.

But what if the kid was still struggling to adapt?

I was struggling to socially adapt long after the AS label was removed and I was succeeding academically.

Does that count?

What about later on, if the social environment changes and things go "pear shaped". It's happened to me before. Where do life/circumstances end and mild AS begin?

I thought that the point of a medical diagnosis was to attract appropriate help and support for the individual concerned, not negativity and abuse from other people. What is the point of having a diagnosis if it just aggravates the problem and increases social isolation/discrimination? Surely, with reference to this argument, one could argue that not having a diagnosis is actually more helpful and productive because having one would decrease options and opportunities available?
I don't understand this at all.

It also seems bizarre also that there's no objective physical test for this medical diagnosis. That point made me feel very skeptical about the whole thing, but I still think that there must be something to all of this.

Agrees with this.

Kind of scary, isn't it?

Yes.

The child also doesn't have a condition to shape his/her identity or be led to believe that there is an insurmountable force preventing him/her from reaching the highest potential. Also there is nothing to blame when the waters get choppy, which forces the child to adapt and cope harder.


That's why it's a judgment call. Growing up is a struggle for everyone, but the waters can be especially choppy for someone with AS, however mild. If the child is clearly drowning, you send help.


Well, that is the point of a medical diagnosis, but there is always the isolation/discrimination, the good with the bad.


Yes, that may be true as well, especially if you were ever obligated to disclose the diagnosis, such as when applying for certain government jobs.


Science isn't there yet, though I don't know if it ever will be. Also, syndromes by themselves are not really objective. They are simply a grouping of symptoms together, sometimes without a known cause.

I found out on an autism forum. Someone else noticed it, not me. Now it is so clear it's not even funny. I just didn't know what it was, but I always struggled with the social stuff. But back in the day, high functioning people weren't autistic. Maybe you can figure out taht that was a long time ago!

--des

Exactly.

Before High School this is exactly the kind of attitude I experienced from other people.

The people that meant well and were "helping" me did seem to have the attitude:

"Oh. She has a mysterious frightening condition. She'll never get better, so why bother? She isn't that social and everyone knows that people who aren't that social don't get far in life. She has so many social weaknesses."

About me, that was hard to shake off once the label was in place.
They just saw my weaknesses and completely ignored the potential for developing my strengths!

I was taken out of classes and given "one size fits all", underfunded special ed tutition, which wasn't exactly geared to my needs or my so called "socialising" problem. Some of the exercises were in insult to my intelligence to be quite brutally honest. This is why I often didn't cooperate!



At that school, I was thrown rotten fish like I was a performing seal-lion *metaphor*. And when I didn't "perform" as expected, my parents and I were blamed, not the school environment.

I wasn't taught how to catch my own social fish and to this day, I really haven't been taught explicitly about subtle non-verbal communication *metaphor*.


At High School, thankfully, they weren't keen on labels.
They let me try and figure out socialising on my own. As a result, I learned some useful negotiation and reciprocation techniques during that time. I even made friends with some final year kids who liked to pick on others out of sheer boredom!

Actually, I don't mean to brag, but I actually received a prize for all my academic hard work at the end of it. This was because people were prepared to inspire me and see my strengths as well as my weaknesses. A far more balanced view!

I can safely say that I reached my highest potential while I was at that school because it was small and the people there didn't keep emphasising the negative criteria in my AS diagnosis at the expense of all the positive abilities I had.

I'd like to emphasise that learning environments like this are incredibly rare.





School is a struggle for NTs too.


Unfortunately, sometimes help isn't always that helpful!

When I was *metaphorically* "drowning" recently, I was sent the following "help":

-A casket full of "Happy Pills" from a doctor. They made me feel better, but also panic. They didn't solve any problems, just made me feel more comfortable floating in the choppy waters for a limited time.

-A flotation ring with the words: "How does it make you feel?" written around the circumference. This was "thrown" to me by a therapist. This aid soon sank (it *metaphorically* had a hole in it, so was therefore no practical use what-so-ever). It also didn't solve any problems in a sensible, practical way.

-At my first school, I was "thrown" a deflated life jacket that said:
"You'll never amount to anything because you have AS and social difficulties."
That promptly "sank". A belief like that wasn't even worth holding on to. Even if they did call me "special", I knew it wasn't meant as a compliment.


This is why learning personal survival "at sea" is so important!
You can't always rely on other people to rescue you or throw you the right (practical) aids from some underfunded "rust bucket"!




Williams, Downs and Fragile X are syndromes with known identifiable genetic causes and markers. Those are objective and can be proven by physical tests, so it is possible to define syndromes in this way.

The thing is, I believe that there may be many distinct genetic conditions currently under the umbrella of "Aspergers" because the definition itself and the genetics involved may be diffuse and polygenetic. Perhaps the definition at the moment is more cultural with traits spread throughout the population.

From anecdotal experience, and what I've seen on this site, I believe that there is a physical phenotype for a genetic condition that's currently under the name of "Aspergers". I also wonder if there's a connection between AS and myopia in some people because I've noticed this with other genetic conditions. I'm not an expert on this, I've just studied very basic genetics/biology. There may even be several physical and behavioural phenotypes. There may even be people in between phenotypes who have both NT and AS temperaments/characteristics. There may be many capable people "object orientated" minds out there.

That's what it looks like from where I'm standing anyway *metaphor*.

I agree. I experience frustration when my family, particularly my father, insists that all my problems in life are due to one particular diagnosis I received when I was five years old. Though I'm certain that I am on the autism spectrum, one particular diagnosis is far from explaining me and all the troubles I have in life. The only universal trait that seems to apply to most people on the spectrum is a higher level of variance across different areas of functioning.

My most debilitating issue is my inability to handle stress or social conflict without having to make a choice between avoiding people or becoming violently angry with people. My anxiety and emotions get in the way of functioning. I don't think this particular trait of mine is 100% related to the autism spectrum. Most aspies I've met are not as angry, sensitive, and emotionally reactive as I am. Some seem emotionally under-reactive and put up with abuse from people that makes my blood boil to even read.