What's the real agenda behind "WALK FOR AUTISM"?

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I need to cut this reply short and reread the whole thread when time permits.

Suffice it to say I sympathize fully with Horus on the financial side of things. I would rather see the state pay the tuition so that higher ed is no longer a privilege of the rich or fortunate.

As for intervening on behalf of children, I personally have little or no confidence in psychiatric help since it did little to help me as a child when I needed it. It's my teachers, art instructors, and class friends that pulled me through. I see it as a philosophical difference — Do you focus on restoring the kid to mental "normality", or do you empower the kid with tools and talents? In the same breath, I don't believe life is so simple that what helped me would necessarily help just anyone.

Take what you want from this. For now, I must get back to work.

Empowering the kid with tools and talents is what a lot of the interventions are. For kids with significant problems, this empowering with tools and talents is a very expensive endeavor and takes lots of one-on-one tutoring with professionals. My daughter doesn't get ABA. She doesn't have a special diet. She isn't being "normalized" by a psychiatrist. And yet she has recieved literally years of expensive interventions. Interventions that you apparently didn't need but that doesn't mean other kids don't need them. These interventions, and the interventions that lots of other people need, cost money. You may think that "empowering kids with tools and talents" is a free or inexpensive endeavor. It isn't. Some interventions require one-on-one tutoring with professionals. (Becoming a parent doesn't morph you into an occupational therapist.) Other interventions are technological and they also cost a lot of money. Somebody has just written an app that can be used on an iphone by autistic people to turn iphones into communication devices. As I'm sure you know, iphones cost a lot of money.

Look more closely at the website you referenced as the sponsors www.autismspectrum.com They aren't Autism Speaks. They are all about empowering tools and talents...goals which you claim to share.

I'm getting an MRI done too. I blurted something out about mental exhaustion and my psychiatrist wrote a script to give to the radiology centre in my town. Would be interesting to see just what's going on in my brain as I have long term memory impairments too.

Like I said..... at this point my only real hope of accessing an MRI depends on getting accepted into this research study. I've been looking around online and there doesn't seem to be any other research studies i'd be eligible for. For one thing, my options there are limited by the fact that i've never been officially Dx-ed with an autistic spectrum disorder. Even if I was, alot of these studies are looking for children with ASDs.

I have been trying to get my case worker at Occupational-Vocational rehab to send me to a neuropsychologist, but thus far, she doesn't seem to believe that's necessary. I've already had five full neuropsych evaluations in my life and I provided her with copies of them. But I feel I know alot more now than I did when I had my last neuropsych eval. That said, I think there's a decent chance I could convince a neuropsychologist that an MRI (and/or other neuroimagining) is necessary in my case and that it might be able to determine the source of my memory problems. This is again assuming they have an actual neurological basis and I haven't merely exaggerated or imagined them. They sure seem real enough to me and they always have. Since the results of all the conventional neuropsych memory tests i've had suggest I don't have ANY (in terms of both short-term and long-term memory) memory problems, my only other diagnostic option here seems to be an MRI and/or other neuroimagining techniques.

If a neuropsychologist would recommend an MRI, my case worker told me OVR would likely cover the costs of it. Obviously this does me no good unless and until she's willing to send me to a neuropsychologist. I really don't know what else to do here. My family and friends are not willing/able to cover the costs of one and there's no way I can work right now. I'm almost ready to swallow what little pride I have and share my story on one of those websites where people in some desperate situation (or claiming to be in one) ask strangers for money.

Pensieve~

Good luck with your own MRI btw I'd be interested to hear about the findings if you're willing to share them.

Pensieve~


If either one of us really do have significant deficits in long-term memory, I have some doubts as to whether they could have anything to do with AS/ASD/NVLD. I rarely, if ever, encounter anyone on the autistic spectrum (including my fellow NLD-ers) who complain of LONG TERM memory problems. Most on the spec seem to have normal, or often enough, even remarkable, long-term memories. There are exceptions to this, but i'd guess they mostly occur in people on the spec who have seizures and/or epilepsy.

Furthermore...it may be difficult to confuse long-term memory problems with ones related to short-term memory. That is provided you have undergone the common neuropsych memory tests like WAS. These tests are supposedly pretty good at identifying deficits in short-term/working memory. They seem to be of limited utility when assessing long-term memory contrary to what psychologists believed about them (and long-term memory in general) up until recently. Many on the spec have problems with short-term/working memory.


I'm wondering if you've ever taken the Halstead-Reitan test. This test is used to evaluate individuals with various kinds of suspected brain damage. One particular subtest, known as the Category Test, on the H-R battery seems especially relevant for those who complain of memory problems. The following excerpt is the one bit of information i've uncovered which might contradict my aforementioned idea regarding the efficacy of even the common tests of short-term/working memory. This is from a book I recently read about neuropsychology:

"The Category Test is probably the best measure in the Halstead-Reitan battery of abstraction, reasoning and logical analysis abilities which in turn are essential for organized planning. As noted earlier, subjects who perform especially poorly on the category test often complain of "memory problems". In fact, the category test requires organized memory (as contrasted with the simple reproduction of stimulus material required of most short-term memory tests) and is probably a more meaningful indication of memory in practical, complex, everyday situations than most so-called memory tests especially considering that memory in a purposeful, behavirol context necessarily depends on relating the various aspects of a situation to each other"

Now i'm not sure if the author here is referring to short-term memory, long-term memory, or both. He seems to be implying that even most of the conventional short-term memory tests can yield "false highs" whereas the Category Test is much more accurate in this regard. If so and assuming he's correct...maybe even the standard neuropsych tests of SHORT-TERM memory leave something to be desired when it comes to accurate psychometric measurements. In any case...I scored very low on the Category Test (<1st percentile=impaired) and obviously I do complain of memory problems. But both my memory tests results and my own self-observations don't seem to suggest any major problems with short-term/working memory.

So along with your MRI...you might want to talk to your psychiatrist about taking the Halstead-Reitan test. The results of both may give you some better insight into the etiology and extent of the long-term memory problems you claim to be experiencing. There are certainly no gurantees though, human memory is complex and there's still alot unknowns about it.

I don't really know. I just want Autism Awareness Month to be over. I've been celebrating my differences, this Autism Awareness Month, turning it into Autism Acceptance Month, for me.

I think the anger at autismspeaks, is rather than focusing on helping those with autism, they talk about eliminating autism, curing it, which smacks of eugenic projects aimed at "purifying" other minorities.

It is weird finding yourself suddenly in one, and being told you are not just different, not just broken, you're something to be obliterated.


The autismspeaks stuff is about parents and family of autistic children, NOT the children themselves, otherwise I would have no problem with it at all.

I partook in our local autism walk today and I was disappointed in the results. I was expecting to meet some folks that either were on the spectrum or parents of those on the spectrum. What I sadly learned is that most parents do not want to hear the success stories of those that came before their children and did not have the help or assistance that is available today. In many ways it came acrossed as a pity party for those impacted by autism/AS.