I was diagnosed with autism at a young age, but now....

Page 1 of 2 [ 17 posts ]  Go to page 1, 2  Next

Duff767
Emu Egg
Emu Egg

User avatar

Joined: 27 Apr 2009
Age: 30
Gender: Male
Posts: 3

27 Apr 2009, 11:24 pm

I was diagnosed with autism at age two. The doctor who diagnosed me told my parents that I would "find my niche". To my dad, the doctor was claiming I would be lucky to clean the rest of my life. My parents, keeping their cool, placed me in an early intervention program. It might have very well "saved" me.

I am now 19, off at college, and according to society, a "normal" citizen. Most people don't know I'm autistic. I don't really see it as something to brag about. Only my close friends and family know, and even they aren't sure what to make of me. My mom seems very confident in the diagnosis. I asked her if it was a misdiagnosis, or perhaps I have asperger's (which, in all honesty, is what I believed for a long time), when I took an internship at the same program that "saved" me. She laughed and said that there wasn't a doubt in her mind; I was autistic.

Was is the key word, as I don't appear to be. I had all the symptoms: terrible eye contact, strange stimming behaviors, a need to organize and line up, ignorant to the world around me, hyposensitivity, non-vocal, ect...
I actually saw a video of myself at around three years old in a therapy session, and after working with autistic children my entire "normal" life, I have to say I was pretty darn autistic. It was a strange feeling, seeing myself almost two decades in the past, clearly an autistic child if I've ever seen one. But to see myself actually showing these symptoms, actually going through the therapy...it was strange, no other way to put it. But I guess my mom and the others I asked are right. I was most certainly autistic.

But am I now? My eye contact has improved, but I have to focus really hard or else I can't hold it. I often don't understand what people say, even though I clearly heard it and should understand it. I still have hyposensitivity and don't feel things as quickly or as obviously. I can handle myself in social situations, but I hate small talk and have difficulty holding any sort of conversation with anyone, even those close to me. When I get antsy I tend to organize things like cards into patterns that might only make sense to me. I NEED my iPod on me at all times. I need headphones and music in my ears, even if I'm just going across the street. If I can't, I get irritated. I get uncomfortable with people touching me often. I couldn't give my mom a proper hug 'til I was 17. I need help on many things, and don't know things that should be obvious. I can't even tie my shoes the proper way.

But, according to the world, I'm normal. Nobody will see me on the street and label me autistic. Hell, even people that know me wouldn't guess. So that brings me to wondering if I really am autistic. I feel like I am constantly, and it's something that is with me all the time. I often feel overwhelmed with what is expected of me, the things I need to do to get through life. All of it, work-related, social-related, even personal-related, is a constant struggle.

Sometimes...this is going to sound strange and possibly awful but...sometimes I wish I had more severe autism, something more clear-cut. At least then I would have somebody to help me at all times. I wouldn't have any kind of expectations of me. Ignorance is bliss, I suppose. But I have the worse of both worlds; I'm an autistic that has to deal with the world. The real world, I mean.

I've looked at some other forums and saw that depression tends to follow cases like mine. I suppose I can't deny that, but I don't think depression is the right word. I love life, everything it symbolizes, everything it has the potential to be. Squandering one's life is such a waste, but I want to know if anyone is in the same boat I am. I need to know if anyone else can relate to what I'm going through. If somebody understands the confusion that I face every day.

Is anyone with me?



FireBird
Veteran
Veteran

User avatar

Joined: 12 Feb 2007
Age: 37
Gender: Female
Posts: 2,151
Location: Cow Town

27 Apr 2009, 11:52 pm

When I was first diagnosed at 5, I had what the doctors referred to as, "moderate high functioning autism." I had the symptoms well before I was 5, probably since birth. When I was that age, I didn't make eye contact, I had almost no language, echolalia, rocking, screaming....all the classic symptoms of autism. Now, I'm completely different. I speak 24 hours a day and at autism conferences! I'm more Asperger's now, and some people don't even think that. When I tell someone that I'm autistic, they are shocked! When I was diagnosed 21 years ago, the doctors gave a grim prognosis. They told me that I would never go on to college, never make friends, never hold a job, and when I became an adult, I would have to be institutionalized. I proved them all wrong! I graduated with honors in college, made friends, have a business (but sadly the business is a failure, I will admit that) and I'm not put away somewhere.



androo4salez
Snowy Owl
Snowy Owl

User avatar

Joined: 14 Apr 2009
Age: 29
Gender: Male
Posts: 126
Location: Utah (USA)

27 Apr 2009, 11:56 pm

I could, somewhat, relate. Though, back then, I was misdiagnosed. I was never really "diagnosed", it was just the opinion of one doctor not trained in the proper field long enough. But I was put into a general special ed head start program. But by the time I was old enough to go to kindergarten, the special ed teachers told my parents I was fine to go to kindergarten at a normal school. And I did, with no real help from anyone.

I understand social situations, I pick up on social cues, I don't even have to concentrate on eye contact, I have many acquaintances and a few good friends. Nothing about me hints any ASD. The only thing that hints ASD is my reluctancy to be the center of attention, but that's because of my social anxiety disorder (that I am getting over).

So, I guess I can't relate to you to much. But if I were you, I wouldn't worry to much whether you are autistic or not. That stuff doesn't truly define who you are. Just live happily as you are, with stride and with confidence. You're in college now, you're well on your way developing the path of the rest of your life.

Quote:
I often don't understand what people say, even though I clearly heard it and should understand it.


I get this too. Often times, if you just wait, your brain will register what the person has said. Sometimes, you hear what the person says clearly, but your brain has a slight delay in comprehending what someone has said. NT's and Aspies alike get this all the time.


_________________
Androo is an NT, treat him as you would any other human. Kthx.

"All things new are fought against, even thought their time has come. Stretch and reach to conscious mind. Seek defeat in those who fear."
- Henrik Ohlsson


sinsboldly
Veteran
Veteran

User avatar

Joined: 21 Nov 2006
Gender: Female
Posts: 13,488
Location: Bandon-by-the-Sea, Oregon

28 Apr 2009, 12:05 am

we get used to being autistic. We live in the land of NTs and we learn to walk like them, talk like them and think, after awhile, we are like them. We are smart and can learn to act. After a while we think the act is us.

Well, why not?

Merle


_________________
Alis volat propriis
State Motto of Oregon


wigglyspider
Veteran
Veteran

User avatar

Joined: 23 Apr 2009
Age: 35
Gender: Female
Posts: 1,306
Location: WA, USA

28 Apr 2009, 1:25 am

I can definitely relate to this~
I learned a couple years ago that I'd been diagnosed with autism when I was younger, and I still haven't really wrapped my head around it. Before I even found out, I had learned to act normal enough that other people just thought I was lazy and scatterbrained, and that's what everyone still thinks because I haven't told anyone differently. The problems I had in my childhood sort of faded away and just seemed like normal, trivial road-bumps to me. But I've been realizing that a lot of my problems might be bigger than I thought.
I understand what you mean about wishing there was someone with you to help. That's why I joined this forum a few days ago, because I don't really know what to do or what to think about all of this and I want to be able to talk to someone.
But every time I think about wanting help, I get sort of disgusted and tell myself to suck it up and stop feeling sorry for myself. I don't know which is true: do I have a problem, or should I just suck it up? I can't tell. D:

PS Good luck in college. I just graduated recently. Prepare for the loss of structure in your life. D: D: That's what I'm struggling with now. Of course, it might not be the same for you. Just FYI though.



Shelby
Deinonychus
Deinonychus

User avatar

Joined: 30 Apr 2007
Age: 41
Gender: Female
Posts: 326

28 Apr 2009, 1:32 am

I was never "low functioning" like you were, but yet I still completely identify with everything you said. Yep, eye contact is hard, need an Ipod, don't like to be touched, don't always understand...funny that at age 2 if we were put together, we would have seemed worlds apart. You couldn't talk and would have been rocking in a corner lining up toys, I would have been yakking at a 5 year old level and being Little Miss Social. But as adults we are at the exact same level...autism is a funny thing!!

You're not the first person to say they wish they were "more autistic." I've seen it said here before, in fact I think there was a whole thread about it a while back. I sometimes feel the same, in one way I can live a semi normal life, but because I'm so high functioning I'm expected to just be normal and no allowances are made if I can't. If I was totally autistic, nobody would expect anything from me. I do wish that there would be more attention to Aspergers Syndrome, if the general public understood it better then perhaps we could tell people what we are, and there would be understanding about that. For example everyone knows and understands what deafness is. Nobody expects a deaf person to hear them, and most people know to face the person and speak clearly for them to lip read. If everyone understood Aspergers, they might be a little more forgiving about eye contact and some of our behavior.



Danielismyname
Veteran
Veteran

User avatar

Joined: 2 Apr 2007
Age: 39
Gender: Male
Posts: 8,565

28 Apr 2009, 1:54 am

Why don't you get another assessment?

It's actually good to get one when you're an adult to see if you still meet the full disorder, or your symptoms have abated and you're better off saying that you have Residual Autism (which comes under PDD-NOS).

It happens now and again that people with Autism improve to a level that's equal to or better than AS, whereas others make some improvement and "go back" and some don't improve at all; the latter two tend to be more common, but the former happens.



outlier
Veteran
Veteran

User avatar

Joined: 16 Oct 2008
Age: 43
Gender: Female
Posts: 1,429

28 Apr 2009, 2:52 am

The description of your current traits and difficulties sounds very similar to what those mostly classified as AS experience; a large part of the problem is that any disability present is mostly invisible, so others are less accomodating. You're certainly not alone in having to deal with that aspect. Sometimes, cases of more severe autism in childhood change and resemble AS/HFA cases later in development. You might fit the criteria for this if you are experiencing distress or impairment and your traits meet the threshold for a diagnosis.



buryuntime
Veteran
Veteran

User avatar

Joined: 6 Dec 2008
Age: 82
Gender: Female
Posts: 3,662

28 Apr 2009, 4:33 am

opposite for me, becoming worse..



kip
Veteran
Veteran

User avatar

Joined: 13 Mar 2007
Age: 33
Gender: Male
Posts: 1,166
Location: Somewhere out there...

28 Apr 2009, 5:18 am

Shelby wrote:
I was never "low functioning" like you were, but yet I still completely identify with everything you said. Yep, eye contact is hard, need an Ipod, don't like to be touched, don't always understand...funny that at age 2 if we were put together, we would have seemed worlds apart. You couldn't talk and would have been rocking in a corner lining up toys, I would have been yakking at a 5 year old level and being Little Miss Social.


Yea, I was just like you Shelby... Mum couldn't keep me next to her. I'd run off and make friends with anyone willing to listen about whatever I was fixated on.

But now, I'm just... well, me. I don't really fit an AS DX any more, because most of the time I can fool you. I can fake eye contact, I can pretend to be interested in your conversation, I can even smile and laugh at the right times. But it doesn't mean I feel it. I'm not laughing because the joke was funny, sarcasm still eludes me, I'm laughing because everyone else is. Later I'll ask what it meant. I'm not smiling because I think you're cute or funny or nice, I'm doing it so the months of practice to make it look normal don't go to waste. I'm smiling because I'm supposed to. I don't listen to your music because it's cool, I listen to it so when I rock to the beat everyone thinks it's just cause I like the song, not because I rock a lot.

But there's not a single one of these behaviours that isn't the culmination of years of practice on how to fit in. I sill have my days, there are even some where I'd probably be DX'd classic autism. Those days are usually held at home. It doesn't fool everyone, my best friend of many years looked at me and said, 'Duh', when I told her I have AS. She pegged me. But the people on the street wouldn't.

I've learned to live with having AS. It is me, I am it. Yet neither controls the whole. That's a good thing, I suppose.

And don't worry OP. You are what you are. No past, present, or future DX will change that.


_________________
Every time you think you've made it idiot proof, someone comes along and invents a better idiot.

?the end of our exploring, will be to arrive where we started, and know the place for the first time. - T.S. Eliot


AmberEyes
Veteran
Veteran

User avatar

Joined: 26 Sep 2008
Gender: Female
Posts: 1,438
Location: The Lands where the Jumblies live

28 Apr 2009, 5:56 am

kip wrote:
You are what you are. No past, present, or future DX will change that.


I agree, but other people's opinions of who you are will change.



pandd
Veteran
Veteran

User avatar

Joined: 15 Jul 2006
Age: 47
Gender: Female
Posts: 2,430

28 Apr 2009, 7:55 am

Your description of your current experience includes autistic characteristics (included impaired functioning) in all three core areas. What DSM or ICD or what have you designation applies to you right now, no varies from physician to physician, depending in very large on their interpretation/working theories of autistic classification.

So to arrive at an opinion meaningful to you, the first thing is to clarify your working theory/interpretation of autistic classification, because the implications of that will determine what "kind" of autism you have. If you want professional clarification/reconsideration of your earlier diagnosis, it would probably be helpful if you choose someone whose interpretation of autistic classification is consistent with your own.



Danielismyname
Veteran
Veteran

User avatar

Joined: 2 Apr 2007
Age: 39
Gender: Male
Posts: 8,565

28 Apr 2009, 8:37 am

To add,

I doubt most people know how autism manifests, unless they have a child/sibling/friend/whatever with such or they're a professional.

I mean, you can be severe and sitting around reading a factual book in the middle of a field and under a tree, and no one would notice anything if they walked by; if they try to interact with you, they'd probably think you're quite odd, but they wouldn't know autism, just as they wouldn't know many other neurological conditions. Now, Down's syndrome is very evident, and that's only because it manifests in the ways "normal" people notice easily.

Now, if you're off at college by yourself, that'd probably be something that's quite atypical for someone with Asperger's, let alone Autism.



Zonder
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Age: 56
Gender: Male
Posts: 1,081
Location: Sitting on my sofa.

28 Apr 2009, 10:20 am

Duff767,

I relate to what you write, although I didn't have many stimming behaviors when I was little. Very few people would ever guess that I have some sort of pervasive developmental disorder. I also understand what you say about depression - I experience depression often more like a lack of energy than gloom and doom. It can take so much to maneuver through interactions that it saps my energy reserves.

I posted an article in which I discuss similar things on this WP thread. Something missing from much of what people write about the autism spectrum is that some people can and do alter their function and behavior to look more NT, but those who have altered are not studied - the current focus in more on the perceived deficits.

Z



Chibi_Neko
Veteran
Veteran

User avatar

Joined: 23 Oct 2007
Age: 38
Gender: Female
Posts: 1,485
Location: Newfoundland, Canada

28 Apr 2009, 10:30 am

I know what you mean.
I did not talk until I was 3, the doctor said that I have mild autism, but I had a lot of the classic autism symptoms.

Today people would not know if I was autistic. I am a college graduate, got a job, house, husband.
But as a aspie I still have the social quirks and don't like many of the things that a typical aspie would not like.


_________________
Humans are intelligent, but that doesn't make them smart.


28 Apr 2009, 1:56 pm

Doctors said I was suffering from autism when I was little. There was one doctor when I was a year and half and my mother took me to him and he slaps a label on me before she even tells him about my history and she just thanks him and leaves while in her mind she was thinking "Thank you for placing a label on my daughter before you even hear her history you bastard." After that she never trusted anyone else about doctors so my mother found them on her own. She even told me recently that doctor said I was going to be in a institution and would never talk and take care of myself.

Then when I was four or five, it was "autistic behavior" because I had hearing loss and I was labeled multi handicapped. I never asked my mother about that word though. Then I was diagnosed with AS at age 12. I was hard to diagnose because of my past.