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Aspigander
10-27-2008, 05:44 AM
Hello everybody. I am a Michigander who was diagnosed with Asperger's Syndrome (hence the username of Aspigander) almost nine months ago. I was 24 then, 25 now. While the diagnosis was kind of a relief, I'm finding it kind of difficult to figure out how to cope in a world where you are expected to be neurotypical. Particularly, I'm finding things difficult with my NT mother, who (understandably) is long since tired of all of my idiosyncrasies.

My mom had wondered off and on throughout my life if I might have some form of autism, however the diagnosis of Asperger's Syndrome wasn't widely known back then, and I had a couple other disabilities that might make the AS difficult to diagnose (and from what I've gathered it is often originally misdiagnosed as something like ADHD, which is one of four diagnoses that I had been given as a child). I have a visual impairment, which means that non-verbal cues can be missed, so it was very easy to attribute that to the VI. I also was born with some facial/oral defects, which means I had a delay in learning to talk. and learning to talk is not associated with AS. From talking to my mom though, it appears that it was not my brain that had the problem learning to talk -- it was purely difficulty in forming the right sounds that needed to be formed to actually make the word I *thought* I was saying. So any delay in learning to talk seemed to be related to the oral anatomical issues.

My mom works at the elementary school that I attended, and when I was 19, she attended a workshop on autism, came home, summoned me, and said (it could have happened yesterday I remember it so well): "I think you have Asperger's disease." We have, of course, both since learned that it is more accurately termed a syndrome rather than a disease.

I poured myself into researching AS online, and sure enough, it seemed to fit. In fact, it seemed to fit very well. Meanwhile, my mom looked for professionals that were experienced with the autism spectrum, but there was a problem. Autistic disorders are a pediatric diagnosis, and I was 19 at the time and thus an adult. I asked the psychiatrist I was seeing at the time, but again, it's a pediatric diagnosis and he was not a pediatric psychiatrist, so he couldn't say either way. I imagine he might have entertained an investigation if he also worked in pediatrics, but he only worked in adult psychiatry, so was not comfortable saying either way. Finally I kind of gave up looking into it online, since no professional would look into it, even if I had it I figured I was just too old to be diagnosed. I was still in high school, and, since I was in the special education system, I asked the SE department to look into it. Of course, I already qualified for disability services, so why add another disability? The school social worker did look through my file, going all the way back to preschool, to see if he could find anything that might have indicated that an investigation might be warranted, but could find nothing and could do nothing more. So I just kind of gave up on that idea.

I had stopped going to mental health professionals soon after. Not that they really helped me much throughout my life. However in early 2008 it was very apparent that things just aren't working. So, with reluctance (after all it hasn't been helpful thus far), I looked online for a psychologist and found one that I liked the profile of right away. I asked my mom to go to my first appointment with me which she did. I also took a list of I think about 19 items of issues. She looked at the list. She asked me some questions. She asked my mom some questions. Then she said:

"I'm wondering, after looking at this list and from what you and your mom have told me, has anybody ever mentioned the possibility that you have Asperger's Syndrome?"

My mom and I just looked at each other and kind of chuckled. We then explained the issues we had when we'd first suspected it. I wish I'd have found her five years ago, because it didn't make sense to her that no one would look into it. After all, she said, it doesn't go away when you turn 18.

Anyway, I do realize that this forum has an Asperger's Syndrome section, but the Autism section looks like it might be a little bit more active, and since it is classified as an autistic spectrum disorder (though, according to my psychologist, some professionals struggle with that), I figured my posting here might not be too far off base.

LIZARD
10-27-2008, 09:33 AM
((((((Aspigander))))))).

You are certainly welcome here! :) I think you could also be of significant value to us, although I know you're still learning about your AS.

I know about walking through life wondering why certain things are so much easier for other people. I have always known of my dx in some sense (hydrocephalus), but I--and everyone else around me--was clueless (for over 20 years! I'm 42 next week) about why I had such problems socially and academically. Learning everything I could get my hands on about hydro, epilepsy (which I also have), and so many other related things opened up a whole new world for me, and finally, in my late 20s, I started to feel some sense of control over my conditions and stopped fearing the unknown so much. It also helped me learn to advocate for my son, who is autistic and has Chiari Malformation. I lost a very good friend to hydro issues last fall (see siggy :( ), and her death has sparked a renewed fire in me to do what I can to prevent what happened to her and to me. You may find that AS becomes a "cause" for you, but even if it doesn't, you will always be welcome and supported here on BT. :)

LIZARD :)

Mother's Heart
10-27-2008, 11:12 AM
Welcome Aspigander.
We love having our Aspies posting here....enjoy you, plus for us parents we get perspective on life with ASD that we long to have.

I have a 15 year old son with Autism and an 18 yr old daughter with a history of extreme low vision. I understand what you mean by the manifestations of ASD being masked by other conditions. I've often said, 'somedays I think the label got slapped on the wrong kid' since my dd has some character traits that fit aspieness....but for her too the visual issues cloud the picture...because the things we saw could also be vision related. Whatever the case, she is a delight to me and a boon to the rest of the world too. :D (mom)
anyhow, welcome to the forum. we look forward to having you here.
cj

Kristen (ColeysMom)
10-27-2008, 12:38 PM
Welcome Aspigander!

I have a son, 5.5yo who was born 3 months early. He has struggled with a lot and was diagnosed with PDD-NOS at 2.5yo. He has made tremendous gains since then and is now in the process of being reevaluated. I am bracing myself for ADHD or Aspergers. However it still remains to be seen whether this is all part of his prematurity or other medical issues he deals with. So I too empathize with the blurred lines that seem to accompany this collection of characteristics.

I look forward to getting to know you and learning MUCH from you!

KJ

Aspigander
10-27-2008, 07:00 PM
LIZARD (I'll respond to all parties in separate posts),

Actually, I think AS might wind up being a cause for me if it hasn't already. In fact, a few days ago I actually started a blog (http://aspergerbrain.blogono.com/) about my AS, in the hopes that not only will I learn from my own postings, but that others might learn from me. I may do research on other ASD's and talk about that as well, but for now I'll probably stick mainly to AS as, unless and until I learn a little more about the other areas of the spectrum, I'm trying to be reserved about talking about that which I don't know much about (in fact, on the most recent post, where I did somewhat touch upon the spectrum, I put a rather elaborative disclaimer on top of the post stating that views expressed are only my impressions and may not be medically accurate).

So, yep, I think AS may very well be well on its way to becoming a cause, if not already.

Aspigander
10-27-2008, 07:15 PM
Mother's Heart,

I think I may have suspected for a while that a lot of my problems have more to do than just the VI, and more to do than the speech impediment (though the VI has always been a more obvious problem, though the speech impediment which has been helped immensely through therapy led to issues as well), though I may not have realized I had suspected it.

When I was in HS (well actually all of my school career), I had a consultant come out from the local intermediate school district that dealt with students with visual impairments. At one IEP (which I attended), one...problem that was brought up was the issue that I never was exactly one to be up on personal hygiene. Where most people get up, have a shower, brush their teeth, etc., it's just something most take for granted, with me there's always been some disconnect. Same with other areas as well (you really don't want to see the inside of my apartment, lol). Anyway, my mom asked the VI consultant if those issues had to do with the VI (i.e. maybe I can't see in the mirror that my hair is dirty, nor that my shirt has a stain, so maybe that's why I had those issues). Consultant said no, most people with visual impairments know that they might not see that they're not presentable, so work harder and do things "just in case" to make sure they are. I have often wondered if the disconnect I have with hygiene/other organizational issues might be AS related. Not entirely sure, but I do kind of suspect it.

Anyway, that ramble was just to say that I guess sometimes, while something might be masked by another disability, there may be certain issues that just don't quite *fit* with the masking disability.

Aspigander
10-27-2008, 07:17 PM
Kristen,

I look forward to getting to know you and learning MUCH from you!

Thanks, and likewise. :)

milivica
10-27-2008, 10:03 PM
I can't stress this enough...Asperger's like autism is not a puzzle, not a different 'cure' for everyone. Neurological development cures autism. You lack neurological development in certain areas of your brain, you do not lack some kind of will power or personal willingness to change or anything. There is one thing that works for autism every time...though not for co-occuring conditions if you have any. That is development of the underdeveloped neurology that is commonly referred to as autistic spectrum disorder, the only thing I know of so far that can do that for you is RDI.

It has changed my life and my son's life completely. My son is autistic and is 12, I have aspergers and am 44, although honestly at this point I really doubt I have asperger's anymore. My son who most here will remember, just a year and a half ago I feared would soon wind up either in some detention home for boys or in residential, is now well on his way to no longer having autism.

The thing that most helped was learning exactly what it means to be nt (neurlogically speaking), what develops in the brains of nt's, and exactly what did not develop for my son and I...then...we developed it. It is that simple, don't believe the stuff about autism is a puzzle and there is no cure blah blah blah. There has been nothing greater in the world for my son and myself, than emerging from autism, living each day without confusion and anxiety and just a general feeling of not being part of the human race cause people so often made no sense at all. Also please steer clear of ABA, unless you want to learn to be all other and no self, which, if you are considered a high functioning autistic, you probably already are being as that's often the only way to survive when you're aspie.

Of all the times in history to have Asperger's, you picked the best! Check out RDI www.rdiconnect.com . You can PM me for the name and number of the consultant we use, she is in Illinois, she is the most amazing person I ever met. She's nt, but totally understands the autistic mind, she's super great at 'translating' aspie to nt, and nt to aspie. (My husband, as most of the world, is nt).