898

ever since i first learned of it, i have suspected that i might have Asperger’s Syndrome. i have also come to realise that it is very unlikely that i will ever get a valid diagnosis as having AS because the syndrome wasn’t identified until i was already more-or-less an adult (is 20 an adult? i thought it was when i was 20, but now i’m not so sure). but thanks to , i was pointed to this article about the first u.s. online autism survey, which lead me to the Interactive Autism Network, where i discovered this article about very late diagnosis of asperger syndrome, which has a link to the web site that has all of the screening questionaires… i’m seeing ned today. we’ll see what happens next.

16 thoughts on “898”

  1. to be turned down unless a lawyer gets involved on the third appeal attempt.

    i heard that when i was still in the hospital, but i’m only now getting to the point where i believe it. i’ve just completed my second appeal and i’m waiting for a response. once i get turned down the second time, i’ve already contacted an attorney who will come on board at that time.

    i am definitely interested in discovering a disability law oversight organization as well. 8/

    i hate dealing with lawyers, though… previous negative experience has given me a very cautious approach when lawyers are involved.

  2. Regarding SSDI (I assume you mean SSDI, not SSI, b/c SSI is rather black-and-white whether you qualify), I learned something about the application process recently that I wish I’d known a year ago.

    Apparently it’s usual for a person, no matter what their level of disability, to be turned down unless a lawyer gets involved on the third appeal attempt. The process is to apply, be turned down, appeal, be turned down, appeal a second time, go to court, get approved. I know this sounds incredibly fucked up, but I heard this from both people who had to do it and from lawyers.

    There should be a disability law oversight organization of some sort in WA. In OR, it’s called Oregon Advocacy Center. There are lawyers there (at OAC at least) whose job it is to do the SSDI court thing–they take a percentage of the back payments once SSA approves the claim.

    I’ve heard that a disability law oversight organization exists in each state. That is a process you may want to investigate.

  3. from the time i was very young i have avoided other peoples’ direct eye contact, except for people i knew well, and have i have always preferred indirect eye contact. i frequently don’t look directly at a person when i’m talking to them. in the same way, i don’t have the range of facial expressions that most people have, and when i “try” new facial expressions, i either totally fail, or i succeed, but use them in the wrong situations, which frustrates me to the point that i don’t use them.

    i have always been a loner. i have always had at least one person who was really my friend, and several people who i would have said were my friends, but they probably would not have said that i was their friend. usually at least one person who was really my friend was at least 5 and sometimes as much as 45 or 50 years older than me. all of my “girlfriends” have been at least 5 years older than me, and the mother of my son (the “psycho-hose-beast from hell“) was 13 years older than me. the only exception to this has been my wife, moe, who is 17 years younger than me.

    to this day i cannot figure out when its appropriate to share in others’ emotional experiences, nor fwhen its appropriate to share my emotional experiences with others. a good example of this was when i first learned that i had had a brain injury. my immediate response was “why didn’t you let me die?” i honestly didn’t understand why my wife and son and the rest of my “family” had any interest in keeping me around, and i’m not sure that i do even now. another example is my friend who died recently. i was in a fog for a week or so, but it was because i was wondering why it wasn’t me, but i didn’t spend any time crying at all, however. on the other hand, i can’t watch an episode of ER on tv without breaking down.

    i have always been very intense about the things that i was interested in. for example, when i was in the 3rd grade, i was reading cervantes’ don quixote. at one point, i was in class during a “quiet time” and i was reading. the teacher came over and asked if i wasn’t bothered by the noise. i looked up and said “what noise?” and went back to my reading. it was only later that i realised that all the other children in the classroom had been raising hell. but at the same time, i was constantly bullied and picked on on the playground because i couldn’t hear what people were saying to me.

    when i was 15, i taught myself the basics of what i now know to be circular breathing, without ever seeing or hearing an example of someone doing it. when i was 18 i won an award in the seattle young artists festival for composing and performing an original piece of music using the circular breathing technique.

    i have always been a foot-flapper, and it has only gotten worse since my brain injury. it is bad enough that my wife has to remind me to sit still at a restaurant or when we go to movies so that i don’t jostle the person next to me.

    i have always been interested in tinkering with things to see what makes them work. my father tells this story about when i was learning to walk. he was going around putting barrel bolts on all of the cabinet doors, and i was going along behind him, opening the cabinets in spite of the barrel bolts.

    as i have grown older, i have developed ways of “coping” with things that i don’t completely understand, but they tend to turn into “rituals”, especially if they are things that i have to do on a regular basis, like eating, or taking a shower. i frequently get so involved in one project or another to the point where i forget to eat and go two or three days before i’ll remember and feed myself. also i’m apt to forget that things are sequential, for example there will be no food in the house, but my wife has to remind me to go shopping before i’ll remember, but if she sends me shopping without a list, whether i’ll come home with any actual food or not is entirely questionable.

    but, sadly, the place where it will do the most amount of good at this point – in my report to SSI – they will look askance at my “self-diagnosis” and decide that i’m not disabled enough. and, unfortunately, without money, there are no specialists that ned could recommend me to. 8/

  4. I don’t know what to say–qualitative is, um, qualitative–subjective. It probably depends on the person interpreting. I don’t actually think I have bad social skills at all; in fact, I think I have better social skills than most people since I don’t have drama and am really good at sharing πŸ™‚ Not looking at people when conversing with them and being *gasp* honest are apparently a “qualitative lack” of social skills to some people *shrug*

    If doctors aren’t told to look for ASD, they generally don’t. My theory (not a totally wacky theory–my doctor agrees πŸ˜‰ is that doctors make an automatic assumption that the person they are interacting with is wired the same way they, the doctors, are. They will see a deranged neuro-typical instead of a well-balanced autistic, unless they are explicitly told to change their filters, and are explicitly knowledgeable about how to detect neurological difference.

    There is no objective test for autism, like a blood test or a genetic test. There is no question sheet that, if answered a particular way, will show that a person is autistic. In some ways the DSM-IV criteria itself is rather silly and meaningless. The criteria doesn’t even address one of the biggest things we have in common, and possibly the core reason for autistic behavior in the first place, which is unusual sensory processes.

    Evaluation has to be a very systemic (not systematic–systemic) process. It involves some objective testing like IQ testing, some examination of developmental history, and some examination of a person’s current situation.

    Some of us got mis-diagnosed with various things in the past; some of us managed to escape being diagnosed with anything. Whatever a person’s past history with doctors has little relevance IMO on whether the person is autistic.

    I’d recommend reading stuff written by us, and interacting with us, and eventually the answers will probably fall into place for you. Self-diagnosis tends to be very accurate. If the click happens, it happens; if the click doesn’t, it doesn’t. You are, however, the expert on yourself, no doctor is.

    Perhaps “Ned” could refer you to a specialist?

  5. see, that’s the thing… i read through the DSM-IV stuff and i, personally, found that, of the criteria listed, i had experienced most of them, but what hangs me up is the word “qualitative”… from my own point of view, i have experienced “qualitative” difficulties as a result of these criteria, but apart from the whispered conversations mentioned previously, which i was not actually a part of, there have been no “official” diagnoses. and, at this point, the only qualified professional that i can afford to see is ned, who is a masters psychologist i’ve been seeing for “treatment” of PTSD: the last neuropsychologist i saw was for one of my previous, failed attempts to get disability following my injury. he was chosen by the SSI folks to give me an evaluation, which helped them conclude that i wasn’t disabled enough. i’m fairly sure that from any other persons’ point of view, the difficulties i experienced probably weren’t “qualitative” enough to make a diagnosis worth the trouble at this late stage of the game, and, as far as i can tell, it’s been that way since AS was first included in the DSM-IV.

    and, so far, what i’ve read in the autistics dot org library, can relate to quite easily, and, just so you know, i read through an overview of the ToM theory and, on the surface, i disagree with it as well… 8)

  6. Baron-Cohen is in the UK and it would be difficult probably to get him to see you.

    If you’re doctor shopping, I’d recommend looking for autism resources in your area and asking for referrals–especially if there is any sort of adult support group, that’s a good place to start asking.

  7. OK, then. Be warned; I’ve spent too much time on this topic ;-P The diagnostic criteria for adults and children is the same. Determining whether one meets that criteria may be different between adults and children. I made a recent-ish post that mostly you can ignore, but it has links in it to the DSM-IV (which is used for Dx in the US) criteria for AS, Autism, and PDD-NOS. Those are the criteria that would be used to assess you.

    Now where it gets tricky is that adults learn coping skills, and sometimes it’s hard for a doctor to see past the coping skills. You DEFINITELY WANT (and trust me, I am speaking from bitter, bitter experience here):

    1. a neuropsychologist, NOT a therapist type person!
    2. a person who SPECIFICALLY deals with adult autism Dx

    DO NOT pick some random p-doctor. Go to someone who specializes in adult autism Dx. I can give you a list of names for PDX–some of those people might be know names closer to where you live. If you want the names, let me know and I will email them to you.

    Do read through the autistics.org library–see if you relate πŸ™‚ Also in the “see if you relate” category, check out the writings by the following people: Jim Sinclair, Joel Smith, Amanda Baggs (and all of the people she links to!), Frank Klein –um I have to stop because I have to make dinner things happen now. That should keep you busy for a while though πŸ™‚

    Some people find it helpful to itemize all of the ways they fit the criteria.

    Ask for info on too–I’m not sure how long you’ve followed that com, but it’s quite typical for people to post with, “does this sound like I’m autistic?” lists.

  8. i wouldn’t expect there to be much reputable research, especially where AS is concerned, simply because it hasn’t been around for that long in a form that people could identify. on the other hand, at this point, if he’s reputable enough that SSI will take notice, then it may be more ammunition to get me some medical insurance, if nothing else. i don’t have to pay attention to, or to agree with him if i don’t want to, but any help i can get where SSI is concerned would be greatly appreciated.

  9. you mentioned that you got your official diagnosis at 34, but i haven’t even seen a medical doctor, except as it relates specifically to my brain injury and the resulting “fallout”, since i was 18, for a variety of reasons – most commonly was that i had no money. since i haven’t been officially diagnosed, i think criteria for diagnoses in adults would be a good place to start, but any information about autistic or AS adults would help. i’ll check out the library link, too… and if perserverating on autism was a diagnostic criteria, that would just be another thing that adds to my suspicion that that’s what may be wrong with me. 8P

  10. Just for context too, my issues with Baron-Cohen (aside from his lack of inclusion of actual autistics in much of his research design), is that I don’t believe in his “theory of mind” theories of autism, nor do I believe in his “extreme male brain” theories. Not only do I find Baron-Cohen’s ideas to make no sense if you apply them to real autistics, but they offend me somewhat as as a scientist because of their extreme oversimplification and lack of systems thinking. Unfortunately, Baron-Cohen is fairly reputable, so people then start believing him; for example, thinking that autistics are robots incapable of empathy, which is one of my least favorite erroneous stereotypes. Some of the really damaging stereotypes about autism that are in vogue right now are because of Baron-Cohen’s ToM (IMO) crap.

    Sometimes Baron-Cohen says stuff that’s not awful, and at least he doesn’t think that autism is a tragedy more horrific than death (gag) or the result of a world-wide conspiracy to hurt children (gag-gag), so he he could be worse. But he’s still not good.

  11. What sort of info are you looking for? I know a lot of autism-related sites, but I don’t know what you’re specifically interested in finding out. Like, are you specifically looking for autism research, or are you looking for general information about autistic adults, or are you looking for diagnostic criteria, etc. ?

    The first place I tend to point people for a very wide range of info is the library at autistics.org.

    Let me know what info you’re after and I’ll send you Lists! (sometimes I think perserverating on autism should be a diagnostic criteria ;-P )

  12. i was only listing the IAN sites as a way of describing how i ended up at the baron-cohen site, and i haven’t read most of what’s on the autismresearchcentre dot com site yet, but from my standpoint, having heard since childhood, doctors, school psychologists and suchlike talk with my parents, in whispered tones when they thought i couldn’t hear, about things like autism, PDD and dyslexia, but never having talked with a professional other than ned about it at all, it’s a place to start, if nothing else. if you have sites with more pertinent information, i would be grateful for a link or three.

  13. P.S. Sorry if you get emailed about comments and got a bunch of blank ones from me. LJ was having a database issues :-/ It seems to be fixed now.

  14. Warning: the IAN project is not necessarily a good thing, which is part of the point of the autism diva post. I have to go Do Things With My Day now so I don’t have time to elaborate, but I don’t want it to seem like I’m supporting what IAN is doing in any way. Also, I do not support most of Baron-Cohen’s ideas; he is one of those researchers who doesn’t seem to be talking to his test subjects enough. Just “for the record” πŸ™‚

    Also, just as an aside, I wasn’t identified as autistic until I was 29, and wasn’t formally Dx’d until I was 34. When someone first id’d me, my first response was, “wouldn’t someone have noticed a little sooner?” I’ve since realized that it was noticed sooner, just not given the correct name. It’s hard to be correctly identified when you were born long before the Dx ended up in the doctor’s manuals πŸ™‚

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