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

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I saw this flier on Cal Poly campus today.

http://i648.photobucket.com/albums/uu20 ... 1271908830

Does this organization have our interests in mind
or is this another profit driven enterprise to degrade us?
(Or am I just paranoid?)

I visited their website but I couldn't find a real agenda — just a bunch
of flowery drivel about the need for "early recognition and intervention".

Would it serve my interests to show up and say, "I have Autism
and nobody intervened on my behalf. Now I have many friends
and am about to graduate from one of the top-ranking engineering
colleges in the state. You better intervene on your kid's behalf or
some day they might end up like me." ?

The best I can tell is that they don't have much of an agenda. Most likely, they think of autism much as they'd think of any other random cause... which means they aren't thinking very much. They probably haven't thought of what it might be like to be autistic; what it means to your identity; what it means to your personality and your way of seeing the world. They probably have only thought about it to the degree that, "It's a condition that needs a cure," putting it in the same category as pink-ribbon breast cancer awareness, change jars collecting for children's hospitals, and any number of events that are marked "for a good cause"...

Your best bet is to educate, not antagonize. People who don't know much because they haven't thought much often just need to be told.

always follow the money.



http://www.autismspectrumcenter.com/

Last edited by sinsboldly on 22 Apr 2010, 12:28 am, edited 1 time in total.

I know that most of these walks are put on, by Autism Speaks. An organization that I don't support.

I hate to sound snarky, but frankly i'm becoming a bit tired of threads like this.

JUST ONCE, it would be nice if some of you would speak out for those of us who DO want treatment and services.

But I guess those of you who are fortunate to have lots of friends and graduate from top-ranking engineering colleges haven't noticed the virtual nonexistence of treatment and services for those of us who DO want them.


After all....you proud and fiercely independent ASD folks who can solve calculus equations in your sleep are the ONLY ONES on the spectrum.



How soon you forget what things were often like for people like YOU 50 years ago.

It makes politicians and businessmen look good.

Don't get me wrong. I know there are people with AS out there who could use extra support,
and I recognize that I'm financially (and arguably mentally) privileged to be able to attend college.

However, I'm skeptical of this particular enterprise because nothing on
their website reassures me that the money goes to help people with AS.
If you, or someone you know personally, has benefited from
Autism Speaks, I'll take your word for it and reevaluate my opinion.

I am actually participating in our community's autism walk this weekend. I am not attending it to support any particular group (I did give a small donation though), I am doing it to network with folks who have autism, have children and family with autism, or those that assist folks on the spectrum. I am hoping to give some advice and maybe help some individuals on the spectrum.

As for the Autism Speaks debacle, all groups that do good have some questionable agendas in mind. People for the most part do not do good, just to do good. There has to be money or glory in it for people. From what I gather, Autism Speaks has deep ties with the pharmaceutical industry, so the information that they provide will have a pharmacological emphasis.

Trouble is, Autism Speaks doesn't do good. Average out everything they do, and it all comes to a huge negative for autistic people.

However, the autism walk that the OP mentioned doesn't seem to have any huge connection to Autism Speaks, so that's beside the point.

We do want treatment and services. That does not mean we blindly support anyone claiming to be helping.

Having their kid end up like you is the dream of every parent on that walk. If you go there and say that, you will find yourself surrounded by parents who want to know how they can help their kid end up like you. But if all you can tell them is that the kids will be as succesful as you if just left to their own devices, unfortunately you are wrong.

And Horus is right. Success is not some sort of default that awaits all autistic children who get no intervention. The key is the right intervention. And that's where things get sticky. Because there is considerable controversy over what constitutes "right". However, with no intervention at all, they won't just default to being as succesful as you, even if you got no interventions.

For the record, my daughter gets non-ABA special ed, pragmatic speech therapy and occupational therapy to teach her to type. None of this will get her into the top engineering college, or any college for that matter. (Although my greatest hope is to be wrong.) But without it she would be considerably worse off, not better.

Last edited by Janissy on 22 Apr 2010, 3:28 pm, edited 1 time in total.

Irrespective of anyone's mental capacity to attend college....the main problem here IS financial of course.

If you're an adult with an ASD or any significant mental disorder and you don't have alot of money....you're pretty much on your own. God save the hindmost in America if they can't save themselves.

Government agencies like OVR leave much to be desired and always have. But due to budget cuts in the past few years, VR services are even more limited and unhelpful then they were a decade ago. I'm now encountering long waiting lists for services and that was never an issue before. Since I reapplied for services about six weeks ago, my new case worker told me OVR would be able cover little, if any, of my educational expenses if decided to go back to college. Ten years ago....VR was paying for ALL of my educational expenses (up to a BA/BS degree....which I never received ) including books and parking stickers.

The psychologists/psychiatrists OVR have under contract have always been the bottom-of-the-barrel. To be fair...they may good enough for patients suffering from the "common cold" mental disorders like depression and anxiety. But people with more complex and unique issues like ASD/NVLD are way over their heads. Most of the ones VR has sent me to had never even heard of NVLD and their knowledge of AS and other ASDs wasn't much better.

Believe me....i'm not saying that organizations like Autism Speaks or the one you mentioned in your OP have helped me in any way. I feel the same way about these organizations as the rest of you do and i'm sorry if my first post came off as abrasive.

What troubles me is that ALL the focus from the ASD community seems to be on these organizations who claim to be "helping" people on the spectrum who neither need nor want the help.

On the other hand....there is little or no focus on the virtually nonexistent services and treatments for people who DO need and want both.

This is inexcusable in the world's richest country and I doubt the passage of the health care reform bill is going to make things much better for poor adults with significant mental health problems.

I firmly believe i'd be sustantially better off today if I would've had access to a more accurate and thorough diagnosis and effectual intervention, treatment and services.

I agree. Pretty much all the talk of intervention is focused on children. This is probably because the number of diagnoses has shot up so fast so recently that many of the people recently diagnosed are still children. You can't possibly benefit from Early Intervention (you have to be a toddler) or ramped-up school special ed services. On the other hand, it is slowly occuring to parents that their children will be adults in a very few years (or next year) and the rumblings of demand for adult services are starting. Too little too late for you. Or maybe not. The focus isn't going to shift off children, but there is a fairly large cohort of autistic children and teens who will soon be autistic adults and their vocal and connected parents (even if connected to Autism Speaks or other dubious organizations) are already starting to realize how little is out there for their children to access in 10 years...or next year. I am maybe too much of a Pollyana, but services for autistic adults may improve in the future if these networked and connected parents bludgeon it into being for the sake of their children. And you could benefit from that.

And NONE of the therapies/services your daughter is receiving were available when I was growing up. More accurately.....they were available to some extent, but since NOBODY wanted to believe there was ANYTHING *wrong* with my brain until I received the results of my first neuropsych eval at 23, they weren't available to ME. I've been insisting there was something seriously wrong with my brain since I was seven years old and my concerns were summarily dismissed by everyone, including the psychologists I saw up until 23.

Now that i've been proven right....(at least in regards to NVLD/AS)....the general attitude seems to be little more than..."Oh well....sorry we didn't recognize any of these problems when you were under 18.... but you're on your own now".

So perhaps I can be forgiven if i'm just a tad bitter about all this.


For all intents and purpose.....I was accurately self-Dx-ed at 14 and even TO THIS DAY....nobody takes me seriously when I tell them I have every reason to believe I have profound long-term memory impairments of unknown etiology. Nobody takes me seriously even after I show them scholarly articles which CLEARLY demonstrate how severe long-term memory problems can be easily overlooked by the standard neuropsychological memory tests.

The psychologists I currently see just want to chalk it all up to depression, "a lack of self-confidence", "a distorted self-perception", etc....ad nauseum. As if my long-term memory was any better when I wasn't feeling depressed at all. Billions of people suffer from all these things and they're still somehow able to function infinitely better than I always have in almost every area of life.

And my family and the few friends I have are still playing the same blame game they played when I was 13 years old.

After all.....it was my life-long dream to never live independently of my family. It was my life-long dream to remember only .0000000000000000001% of EVERYTHING I read, hear, etc.... It was my life-long dream to live in abject poverty and get fired from even most of the unskilled jobs i've had. It was my life-long dream to be baffled by math and science and any college courses related to these subjects. It was my life-long dream to obtain reasonably good scores on my IQ/memory tests and STILL encounter all the aforementioned problems which nobody seems willing to investigate further. The stupid on-paper neuropsych tests are omniscient in the eyes of most people. That's why countless people who consistently score in the mentally ret*d ranges on them go on to obtain graduate degrees in every conceivable field


Mabye my psychologists and family/friends are right....maybe I have exaggerated or imagined my learning/memory problems for one reason or another. But they act like their utterly unscientific and unempirical observations qualifies as PROOF that I don't have the developmental and neurologically-based deficits I strongly believe I have. Given the admitted complexities and incongruities of the human brain, i'd say this attitude is inexcusable.

I do understand why you're bitter. It must be maddening to see all the interventions given to children these days and wonder if things could have been different. It must be also maddening to be an adult and be told you have "aged out" of any help. I hope this research project you posted about in an older thread pans out. It might be insightful. In any case, I also hope that the large aging cohort of autistic children/soon to be adults makes some services available to you too.

Janissy wrote:

There is certainly no adequate services available for me around here and it's made worse by the fact that I lack a formal ASD Dx. I have only been told I fit the general NVLD profile and as a result, i've been officially Dx-ed with LD-NOS or Mathematics Disorder (along with Schizotypal PD, depression, anxiety, etc....).
I tried to get help from the CARD (Center for Autism and related disorders) center at UM/Nova, but i'm ineligible for any thanks to the lack of a formal ASD Dx.


I recently reapplied for OVR and thus far.....my case worker has only sent me to a neurologist who tested my reflexes and gave me a "clean bill of health" based on that . The man didn't listen to a word I said about the learning/memory problems I believe I have. Nor did he pay much heed to anything on my neuropsych evals. Then she sent me to a psychiatrist who was no more useful. I clearly told my case worker that I MUST see a neuropsychologist first and foremost. I told her that only a neuropsychologist would be able to properly evaluate me and THEN perhaps recommend some neuroimagining or any further diagnostic procedures. She told me that OVR WOULD likely cover the costs of neuroimaging IF a neuropsychologist recommended it. I don't know what possessed her to think that a rudimentary neurological exam and a visit to a psychiatrist would be of any use in my case.

As far as this autism research study at Pitt is concerned, I am hoping for the best but fully expecting the worst. Again...I lack an official ASD Dx and I made that very clear to the director of the study. I explained all my other NVLD-related issues, the long-term memory problems I believe I have, etc...and for whatever reason, she still thinks I might prove eligible for the study in spite of my lack of a formal ASD Dx. She told me i'd have to participate in the WITH autism group since they require healthy controls (free of any significant mental disorder) for the WITHOUT autism group. I am still waiting for the consent form she sent to arrive in the mail. After they receive the completed form, someone will call me for a 30-min phone interview and I suppose my eligibility status will be determined by that. I think the phone interview will include an AQ test or something.

The major reason i'd like to participate in this study is because it includes an MRI. And because i'm assuming those conducting the study have some degree of knowledge when it comes to ASDs, NVLD and other neuropsychological disorders. I can't afford an MRI on my own and my insurance won't cover the costs of one. My insurance doesn't cover any psychological/psychiatric care for that matter and since I didn't mention any pre-existing neurological conditions, (which I haven't even been officially Dx-ed with) they're not going to cover an MRI either.


I realize an MRI won't tell you much about learning problems specifically. But they CAN detect many neurological impairments which might be responsible for long-term memory deficits. For example.....hippocampal sclerosis and arachnoid cysts often, if not always, show up on an MRI.


So all things considered....this research study is currently my best prospect in regards to possibly determining the reality and etiology of the developmental long-term memory deficits I believe I have.

I wish it was that simple for me. In true I do beneficing of services, and some dp allow me to right now attending superior educations beisde my financial situation; But at most as education go it's not well taillored for me...