Why is Autism generally only related to children?

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i think there ought to be more public awareness also about diagnosing adults who have been running around dealing with their autism all their lives not knowing what it is.

at my neighborhood grocery store there is one of those donation things at the checkout that says "1 in 110 children has an autism spectrum disorder" or similar and i want to print stickers that say "people" and post it over the word "children" everywhere i see it.

i wonder if the focus on diagnosis and intervention with children is mainly so that their difficult behavior can be "managed" by their parents and educators rather than so that the children can understand themselves and be happier.



(or maybe that is a better perspective on what i'm trying to say) .. or maybe it's that people demand of adults that they figure out their problems themselves, and leave everyone else out of it. I may not be as disillusioned as Horus, but i think he has some very good points.

I thought it wasn't so much solely children but rather because it was easier to diagnose in children. As children we tended to wear ourselves on our sleeves. Makes sense it would be easier to pick up on.

I often wish I could go back to when I was a little kid. I was happiest then. When so much disgusting life crap wasn't an issue to philosophize upon during adulthood. Base cruelty came so much easier also, but it was worth it.

I've noticed the same. I am trying to get an appointment with a psychiatrist who seems to be a good one but she probably work mostly with Autistic children and I am not sure if she would even want to help me.
By the way, I think dr Tony Atwood (or maybe somebody else?? I think he first said that the difference was only in definition but later said there was a greater difference) said there is a difference between Asperger's and HFA. If you have HFA you'd be "less Autistic" as an adult that if you had AS. You'd learn to function more normal then.

katzefrau wrote

I admit i'm very bitter about all this and I feel I have every reason to be. I never received any treatment or services whatsoever as a minor since no one would believe there was anything wrong with me. I knew there was something seriously wrong with my brain from the time I was 7 years-old. I BEGGED my family and the therapists I saw as a youth to take me seriously, but to no avail. I finally had my first neuropsych eval at 23 and the results of it proved me right. Much to my dismay, being proved right didn't change my family's attitude much. Nor did it grant me access to any services/treatment which could be considered remotely appropriate for someone with my issues. I've been living as a virtual untouchable in this society for 22 years now and if it wasn't for my family, I probably would've been homeless or dead a long time ago. While they still don't believe (partially thanks to my high average-very superior IQ scores which prove NOTHING except for my ability to score high on IQ tests as far as i'm concerned) my memory and ability to learn is as impaired as my own 40 years of constant self-observation has suggested to me, I must give them all the credit in the world for being financially supportive.

What's worse is that my lack of an official autistic spectrum disorder Dx actually makes matters worse. I've been told that I *only* have NVLD and since NVLD isn't a formal mental disorder yet, i've *only* been Dx-ed with LD-NOS or Mathematics disorder insofar as any Axis-I/developmental disorders are concerned. So this means i'm not eligible for most, if not all, autism research studies. Studies which are conducted by professionals who have far more expertise in terms of all things neuropsychological than the government-contracted, old-fashioned Freud-fetishists i've had to rely upon. Studies which might yield far better insight into my cognitive functioning than any of the conventional "NT-loaded" neuropsych evals/IQ tests i've had. And finding a research study seeking participants with learning disabilites (let alone unofficial LDs like NVLD) seems about as difficult as finding an honest politician.

Furthermore.... since i'm technically able to wash dishes or something, i'm not even eligible for SSI. There are plenty of Aspies who are working on graduate degrees in astrophysics or something who ARE receiving SSI. I'm not saying they don't need and deserve it, but I couldn't even pass introductory algebra in college. Call me crazy... but I really can't see how this is fair. Why should I be subjected to wretched wage-slavery while many aspies enjoy the educational opportunities I never had? Why should I have to pay taxes while they reap all benefits? If the muckety-mucks at the social security adminstration could spend a month with me, they would see that my issues are every bit as disabling as those these aspies suffer from. Just because i'm technically able to be somebody's unskilled wage slave doesn't mean it wouldn't be utterly toxic to what little mental health I have.

Just like employers (aka....capitalist filth who pass themselves off as people ) are more likely to hire someone who they consider physically/sexually attractive.

Humans are vapid and insufferable sheepified idiots who need to be vaporized in a mushroom cloud.

it's definitely not a fair world.

i guess i've learned to couch my cynicism in more socially acceptable language. but i don't know that i'm any better off for it.

i hope at least that your understanding of what's causing your problems makes things a little easier for you, even if the Powers That Be don't seem to see things as they are.

A bit on the dark side, but I largely agree.

I know i'm no better off for it. I'm no more socially acceptable when I use socially acceptable language, so I hardly have much motivation to do so.

I'm sorry if I didn't make myself clear, but part of the problem is that I DON'T understand the source or the ultimate nature and extent of my problems. Sure I UNDERSTAND what my IQ tests/neuropsychological evals have indicated about me (as well as what the psychologists who interpreted the results have told me.) It's just that there's a titanic conflict between these results and my own life experiences and self-observations.


The result of all my neuropsych evals suggest that I fit the general profile of individuals with NVLD. In terms of what is extremely common for those with NVLD, (and Asperger's) there is NOTHING, I repeat, NOTHING, unusual at all about my IQ results, their "scatter" pattern, or anything else on these evals. Nonetheless....I strongly believe I have profound learning and memory deficits most people with NVLD/AS (those within average or above IQ ranges at least) do not share. Without going into the innumerable details, (many of which i've shared several times before on WP) let's just say I function at a level you would expect from a mildly mentally ret*d person in terms of academic performance, vocational skills, ability to live independently, etc.....and I always have functioned at this level. All this and I obtained a full scale IQ score of 143 on the most recent test I took.

I freely admit that maybe i've exaggerated (though not with any conscious intent) or even, wholly imagined, these learning/memory problems for the past 40 years. All I can say is that they seem very, very real to me. If nothing else, I would at least hope I could be given the benefit of the doubt here. That is.....I would hope people could just believe that I BELIEVE these problems have a genuine neurological origin and aren't just the product of some weird Somatoform-like psychological disorder. I would hope people could understand that the human brain is unimaginably complex and that IQ tests and personal observations can be extremely limited and misleading in regards to what they can ultimately determine about anyone's cognitive capacity.

After describing these issues on WP, i've basically received two contradictory reactions. Some claim IQ tests are meaningless thus implying that I very well may be as intellectually/memory impaired as I believe I am. Others read my writing and see my posted IQ results and claim that there's no possible way I could be truly as impaired as I think I am. They seem to think that just because i'm capable of tasks A, B and C... i'm equally capable of tasks X, Y and Z.


Believe me....nobody finds my situation more ridiculous and unbelievable than I do. I wake up everyday virtually convinced that i've been living inside a nightmare for forty years. I have been screaming for a solution to this neuropsychological mystery of mine for nearly that long. And that is the crux of the matter here. Real or imagined, I see no reason why my problems don't warrant further clinical investigation. Investigation that goes beyond the obvious limitations of these mostly on-paper neuropsychological evaluations and IQ tests. For example, neuroimaging techniques like MRI might be very telling in my case, especially in terms of the origin/s of the memory problems I believe I have. But as an economically disadvantaged adult without even an official ASD Dx, I have no access to much else aside from the aforementioned conventional on-paper neuropsych evals. I've already had five of them, one more isn't going to yield any further insight into my brain. It is very likely that nothing could be done for me assuming my problems have a genuine neurological etiology. But it's a bit hard to be CERTAIN if anything could be done or not when I don't even know what i'm dealing with. I could just shrug my shoulders and say, "well...i'm mentally ret*d and for whatever reason, the IQ tests just don't indicate that". But wishful thinking or not and even after forty years of living and functioning much like many of the mentally ret*d do, i'm not prepared to resign myself to such an intolerable self-realization. Maybe some MR people can find happiness in spite of their limitations, I could never be among them.


So here I am in the world's richest society and everyone claims to be "sorry" i've had such a rough time of it. For whatever it's worth, (nothing of course) I really appreciate the show of sympathy. But plenty of people, both rich and poor, are getting alot more from this society than mere sympathy. How many mismanaged corporations have received bail-outs in the past few years? How many women who can't even take care of themselves receive every hand-out in the world everytime they decide to pop out a baby? I could on forever about the millions of people who've received much more than sympathy in their time of need, whether they deserved it or not.

But woe unto to you if you're an economically disadvantaged adult with a developmental disorder in need of services and/or treatment. Especially if you're one unlucky enough to be without an official ASD/PDD Dx. Even convicted serial killers often receive better services and treatment than people like me do.

I'm quite sure many here view me as a whiner or a professional complainer. At what point is complaining legitimate? Must I wait for another nazi-style culling of my kind before i'm allowed to express my discontent over how i've been treated?

Completely, 100% agreed with this quoted portion of your post.

I do not think it entirely has to do with cuteness. I think it directly has to do with the societal propaganda/belief that "kids are the future." I actually am in the position where I believe the majority of adults have had opportunities to try to change their lifestyle. I think adults would have had to put up with a lot more problematic situations than kids. Adults have more opportunities to realize their impairment. But kids are young and fresh to the world, easy to train and easy to influence. (As Gigi830 said, they're vulnerable.)

It's not only autistic treatments that focus on children, but it's also education, careers/jobs, healthy diet choices, sports campaigns (remember "Get out and play"?), and the sort. Basically, kids have a future. <sadsarcasm> Adults have lived their future. </sadsarcasm>

As for commercials and charities, their advertising appeals to a very specific audience that is guaranteed. Of course advertising companies will gain high ratings if they use children as their focus. This tactic appeals to women and parents everywhere.

I don't know why the hell research and support isn't put into studying/helping autistic adults, though. It is sad, really.

i believe you, for what it's worth. IQ and cognitive ability don't necessarily have much to do with one another, except that the higher your IQ the more you are able to compensate for impairments, or at least present like you are compensating well (or unimpaired). so it may be your IQ that is working against you.

i'm sure you know yourself better than the evaluators you have had to deal with, but i don't have any idea what to advise as far as getting an evaluation that's more in line with what you know about your abilities. maybe you could seek out a specialist who deals only with those of very high intellect, who will see the subtleties in presentation that others miss.

my nephew eluded a diagnosis (of even suspicion) of AS for a long time because his ADHD has a more profound (or more obvious) effect on his functionality, and his giftedness obscured the signs.



if it helps, i'd say it's legitimate. at least you may have found (and continue to find) people here who have had similar experiences.

katzefrau wrote:

It's worth something. It tells me that some rational human beings are capable of giving me the benefit of the doubt. The complexity of my situation is part of the problem. It really isn't something which can be summarized in an hour or two. Nor is it possible to describe it adequately in a few posts on WP. You're lucky if you get an hour with a psychologist and i'm sure many who read what I say here on WP about it all go away with the wrong impression. The results on three out of the five IQ tests i've had are mostly consistent. I obtained full scale scores of 112, 116 and 112 on these. My VIQ was 125, 127 and 119 respectively and my PIQ was 94, 100 and 102. The subtest pattern was likewise very similar. There is a huge discrepancy between my results on the first test I ever had and the most recent one. A discrepancy of over three standard deviations and this seems very uncommon even for people on the spec. I obtained a FSIQ of 94 on the first test with VIQ at 104 and PIQ at 82. The most recent one yielded a FSIQ of 143, VIQ of 155 and PIQ of 111. All of these tests were professionally-administered. That being said....aside from the most recent test, my IQ scores really aren't far beyond the average range. In fact... 94 is considered low average and I certainly feel like my overall cognitive functioning is consistent with that score and maybe a much lower one. However....I believe it's far more difficult to obtain a false high score as opposed to a false low one. Whatever the case....my results aren't that unusual for those with NVLD/AS. I've encountered many people, including many here on WP, who have consistently obtained significantly lower scores. Many of these same people have still managed to succeed at college/uni and even graduate school. I do not believe my own failures in this regard were from a lack of trying. So hopefully you now understand part of the reason i'm so damnably perplexed and frustrated by all this. The results of all my memory tests on these neuropsych evals are equally confusing as they are also within the average ranges (some subtests are even within the above-average-superior ranges). According to all these evals, I don't have any significant issues with attention/concentration either. My results on the Raven's Progressive Matrices tests (and similar tests like Matrix reasoning on WAIS-III) are usually squarely within the average ranges at about 100-102. Considering all of this, perhaps my IQ ISN'T high enough to compensate for whatever mysterious impairments I may have. Whatever the case.... all I have from my own self-research, the psychologists and everyone else is a million theories and no conclusions. I don't think any more definitive answers will be forthcoming unless I can get access to an MRI and/or some other neuroimaging. Even then there are certainly no gurantees, but it's the best diagnostic option I have at this point. I am far beyond the end of my tether here and i'm doing everything possible to try and gain access to an MRI or similar neuroimaging.


.


It really doesn't help, but I complain anyway for some stupid reason. In fact....I think it serves to alienate people more than anything else. Nonetheless....I guess there's a method to this madness. Complaining about the misery of my life is my way of expressing my lifelong confusion and frustration over all this. I would hope that people can relate to the negative emotions associated with it all, if nothing else. Then perhaps they might realize that i'm being very sincere about all this. At least I hope they realize that I have not INTENTIONALLY exaggerated or imagined any of this.

I can't honestly say i've encountered anyone here (or elsewhere) who has had similar experiences. And the sense of aloneness which goes along with that is yet another thing which burns my soul to the core of it's being.

Money and Politics

What are you all on about? Autistic adults don't exist, and children are much easier to use for manipulating people's emotions until they give me their money, so stop getting in the way of my cash flow before I sue you all.

-President of Autism Speaks

Horus, I believe you.

The study of math learning disabilities, in both kids and adults, is a growing field, and might be more promising than autism studies. Memory studies are about a dime a dozen, and may also have fewer criteria for participation, although I think most of them require no special diagnoses or medications (they might not count NVLD, though, since it's not a "real" diagnosis). If your problems were more sensory rather than memory-related, a developmental optometrist could be really helpful. Despite the name, they look at sensory integration in general and not just vision. Their examinations get at brain function and not just whether the eyes are working correctly.

It's really unfair that research and treatment hasn't caught up with where you are. I hope this changes soon.

Thank you ....it means alot to me and WP is basically the only social support (if it can be truly defined as such) I have right now. I am still hoping to get accepted into the autism research study underway at the University of Pittsburgh. I spoke to the director last week and she said she would send me a consent form. I have yet to receive it, but it may even be in the mail today. If not....I will call again tomorrow to see if she sent it yet.



After they receive the completed form, someone is supposed to call me for a 30 minute phone interview. I believe this interview will include an ADOS test.

I told this woman that i've had five neuropsych evals and none of them yielded an official AS/ASD Dx. I told her about my unofficial NVLD Dx (as well as the official Axis-I Dx-es of LD-NOS or Mathematics Disorder...depending on the particular eval) and my Dx of Schizotypal Personality Disorder. I also told her that I believe I may have profound deficits in long-term memory. In short...I was very comprehensive and clear with this woman in regards to my issues. She told me I definitely wouldn't be eligible to participate in the "Without Autism" (control) group since they only accept healthy controls free of any major mental disorders. I pretty much assumed that already, but I am a bit surprised i'm actually being considered for "WITH Autism" group given everything I told her. In any case...we'll see how that goes. Also....I sent an email inquiry to the contact person for this memory research study at Temple.

http://www.temple.edu/cnl/participate/R ... ipants.htm



No one has returned my email yet....so maybe that means they've ruled me out already based upon everything I said in the email. I do believe it's possible that I have some form of developmental amnesia though as far as I know, I never had hypoxic incident or anything else which might cause DA. I'm also going to contact some of these memory research studies tomorrow. It's unlikely that i'll be eligible for any of them, but i'm going to inquire anyway.

http://www.memory.rutgers.edu/memory/ht ... tml#newark


One part of the problem is that none of these studies are being conducted in my local area. Apart from the difficulties i'd face with travel expenses, alot of research studies only accept local participants in the first place.


All this being considered....i'm not really having a great deal of luck finding an appropriate study i'd be eligible for. If you know of any seeking participants with learning disabilites (whether they involve math LDs or LD's in general) and/or studies involving memory (excluding the ones strictly seeking participants with age-related memory disorders like Alzheimer's of course) PLEASE let me know!! ! It just doesn't seem like there are very many research studies which would accept someone like myself with extremely unusual and un/ill-defined (assuming again that my issues have a genuine neurological origin) neuropsychological issues.

While I don't believe my problems are sensory-based....I suppose it's not entirely out of the realm of possibility. Like many NLD-ers....I DO have significant visual-spatial deficits as well as deficits in VISUAL memory. Both of these HAVE been indicated on every neuropsych eval i've had. But in terms of verbal memory (both short-term and long-term) I scored within the average ranges (or above) on all the memory tests in all of my neuropsych evals.


Nonetheless....I still believe I have profound impairments with these aspects of memory as well, not just with the common NLD-related deficits in visual memory. I do have fairly mild myopia, but I wear glasses when I need them. I WOULD talk to my primary care doctor about this and get a referral to a developmental optometrist. But unfortunately, i'm all but 100% certain my insurance won't cover anything like this. I never mentioned any pre-existing developmental disorders since i'd likely be denied coverage if I did. And considering i'm not financially independent, I am not the person who decides which insurance plans are acceptable and which are not.


In case you've never seen it, (i've posted this link many times before) this article from the Oxford Journal of neurology discusses the potential limitations of the standard neuropsychological memory tests in terms of their ability to accurately assess long-term
memory.

http://brain.oxfordjournals.org/cgi/con ... /123/3/472



Considering everything stated in this article.....I don't see any reason to assume my self-observed memory problems are merely a product of my own exaggerations or imagination. While I admit that possibility, (and indeed.... HOPE i've exaggerated/imagined my memory problems) nobody should jump to any conclusions simply because I SEEM to have a normal memory based upon their superficial and unscientific observations. Nor should they come to this conclusion because I performed normally on all the conventional memory tests. It's easy enough for most people here on WP to understand the limitations of IQ tests themselves. I would hope this article at least suggests the possibility of similar limitations insofar as the common neuropsych memory tests are concerned.

Last edited by Horus on 28 Apr 2010, 6:01 pm, edited 2 times in total.