Autism Survey

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Hi there,

We're a non-profit trying to collect data on autistic individuals from their families. If you're willing to participate, please go to:

http://www.thinkcomputer.org/autism

...and fill out our survey.

Thanks!

Aaron

Aaron Greenspan
Think Computer Foundation

http://www.thinkcomputer.org

No thanks. Autism is not a "disease" and you are addressing people who are actually ON the spectrum, not their families, which is your target demographic.

I'm just concern how the information will be used. No way is it going to be scientific usefull information. So whats its real purpose? My wild guess its to find kids for research studies. Which I'm not oppose to but it would be nice if that was stated. I was
on an e-mail list many years ago that told me when any drug studies near me came
up but I signed up knowing that.

Yup, sorry--- the use of the word "disease" shows that very little is understood about ASDs and with that in mind research wil probably be taken form a completely wrong angle.

Any relation to Stanley Greenspan?

Yes, this is mainly a community of people who are autistic, not parents and guardians. And most times those who are parents and guardians are also autistic, themselves.

Once again, the world ignores us and what we have to say. Apparently cognizant adult autistics do not exist...

I'm glad my parents didn't know about AS when I was a child because, I would hate to have such surveys filled out about me.

Hi,

Thanks for all of the replies. I didn't post the survey to anger anyone, so please don't take offense. I realize that there are a lot of people with autism and Asperger's Syndrome who are very much able to express themselves and function as any other adult would, but the fact of the matter is that there are also a lot of people who suffer from autism who aren't as lucky. My brother is in the latter group, I've been dissatisfied with the medical care he's received thus far, and so I'm trying to conduct some research of my own. I have connections to the Harvard University Psychology Department and Harvard Medical School, so if the information were to be shared with anyone it would probably be researchers at either of those two institutions.

As far as autism being a "disease," there could be an endless debate on this topic, but according to the definition as "an impairment of health or a condition of abnormal functioning," I think the classification is appropriate. Please don't jump to conclusions regarding people's sensitivity to any condition based on one word choice alone.

Anyway, you may be right that this is the wrong forum to reach parents or families of autistic children, but in any event I hope you realize why it's important to ask questions like the ones in this survey.

Sincerely,

Aaron (no relation to Stanley)

If you are truly interested in non-skewed information, then why have you relegated yourself to collecting info from parents only?

If you say it is because you want information simply on the more severely affected (there's a debate in that in itself I'll leave for others), even by asking parents you will not get this unless you specify their child must have Autistic Disorder and be diagnosed as on the "severe" end of the Spectrum.

There is no reason to exclude autistics from answering such a survey, unless you specifically don't want us to.

Hello,

I didn't intend to exclude anyone with autism from the survey, but rather was operating on the assumption that most people with autism wouldn't be able to answer on their own. You should feel free to answer if you'd like, and I'll try to update the wording on the site.

I'm reluctant to simply ask those on the "severe" end of the spectrum to answer, by the way, because the spectrum isn't linear based on my experience, and there's no one authority in a position to definitively define what "severe" even means. This is, of course, part of the difficulty in researching these particular disorders: a very wide range of symptoms.

Aaron

Hello thinkfoundation.

The reason why we believe AS and Autism to not be a disease is because all evidence points to it's disproval. There is fundamentally no proof as of yet to say that it is due to a pathogen or something similar. It's a very touchy subject and, if you would scroll down to the bottom of any page on Wrong Planet, you will find the sentence 'Aspergers is not a disease'. I'm a very passive person, and I respect people's views (except on the rare occasion such as what CAN and Autism Speaks are doing), and so I respect that you are doing this for those severely affected. I myself am actually unsure whether CAN and Autism Speaks are referring to just the severely affected or everyone on the Spectrum, but regardless, what we are saying is to reconsider a little bit of the wording.

Trust me, if you were to look at any description of disease, you would typically reconsider the way you use it in relation to Autism and Aspergers. I'm not sure what information the survey is gathering, but if it is to do with parenting, I wouldn't qualify, what with me being 16 and all. That being said, a more appropriate place to put this topic is in the Parenting Section of WP's forums.

No one drops dead of autism. It is not a health related issue. It is not a disease.

It is not even a matter of mental health. I have Aspergers, but I have no depression, bi-polar, schizophrenia, nor am I psychotic, neurotic, narcassitic, sociopathic, or any of the other various maladies that require medication or segregated supervision. I am sane.

The fact that certain mental illnesses are comorbid with the autism spectrum does not negate the fact that they appear equally in the public at large.

In fact, it might be said that only depression is commonly found with ASD, and that would only be because of inappropriate social stimulation, and that should be treatable with corrective behavior and appropriate attention levels, rather than drugs.

It quite angers those in the community to see outsiders tossing off theories left and right, without asking the very people who stand astride two worlds! Who better to advocate for those that cannot speak, than those that see both worlds?

But pardon me, please. It seems your heart is in the right place.

Also, I would agree. The spectrum is not at all linear. Rather than a singular axis, it should comprise of at least 2 or three dimensions. I would not place aspergers/HFA at one end, and LFA at the other, but rather, have NT in the center, aspergers just off center, and LFA further out.

The actual definition that I used above (which I got at http://wordnet.princeton.edu/perl/webwn?s=disease) contained an "or" operator and a second phrase following that, specifically, "a condition of abnormal functioning," which you failed to cite. This is, of course, the definitional phrase that is relevant here.

That being said, your assumptions that A) I am an "outsider," whatever that means, and B) that a disease/mental disorder/impairment such as autism cannot threaten the health of the person who suffers from it, are both incorrect. Many autistic individuals are unable to care for themselves, are homeless, and/or have suicidal tendencies, all of which can threaten health in different ways with varying degrees of seriousness. I am certainly grateful that this isn't the case for everyone with autism, but just as someone before felt that they were being ignored because they were very high-functioning, one should also not ignore those who are very low-functioning--especially because they are less able to express themselves!

The key problem is that while some autistic and Asperger's individuals demand (and deserve) equal treatment with others in society, this kind of equal treatment is simultaneously disastrous and life-threatening for other lower-functioning individuals with the same labels. So at the very least, I implore you once again, please do not jump to conclusions based on a few words.

Thanks,

Aaron

Disagreeing with you on word choices (disease, prevent, medical care) doesn't equate ignoring "lower functioning autistics". This leap of logic always floors me. Being against cures and drug treatments in no ways means "not caring for" or "ignoring" autistic learning differences. My son is not Asperger's, he is autistic but I refused to give him drugs. He is not a medical patient. I spend my time providing a learning environment where he can excel.
I looked at the survey and there were many questions I couldn't even answer because I don't look at them in the way you wrote them.
"Outsider" to the autistic community, that's how your language comes across. It's not jumping to conclusions based on one word or two, like you claim. It's the whole way you talk about "lower functioning" and "higher functioning" and the language of that survey.
The "autism community" and the "autistic community" are two different groups of people sometimes with very different ideas of what is best. You may want to look it up, say at wikipedia, to see the difference in perspective.

Kim,

I took the previous statement on the forum, "It [autism] is not even a matter of mental health," to be ignoring people with autism for whom autism actually is a serious matter of mental health, i.e. "lower-functioning autistics." Language is often imprecise, but I was not making a leap of logic, I don't think. People are entitled to have differences of opinion--that's fine with me.

You have every right to treat your son as you see fit. My brother currently isn't on any drugs, either, and he's doing just as well as he was before, if not slightly better. It's always hard to tell the best way to measure improvement.

If I come across as an "outsider" simply because I make distinctions between different people's conditions, then I just don't know what to say. That implies that there are some serious misunderstandings inside the community and out, I guess.

If there's anything in particular about the survey you think could be improved, please e-mail me with any suggestions, or just post them here.

Thanks,

Aaron

Aaron,

You need help! First of all, you are leaving yourself ********WIDE OPEN******* for a lawsuit!(I figure you are effectively breaking, or encouraging others to break, about 3-4 laws! Some were only passed in the past couple years, but there have ALREADY been suits!) I guess you haven't really considered this, huh? PLEASE heed my advice, and just take the stupid site down.

If you DO keep it up, you could at least add 151-160, 161-170, and 171-180, 181 and higher to make it clear that some are THAT smart?

WHO CARES where you copied(Did you get permission? If not, that is ANOTHER 2 laws broken!) it from. It is WRONG!

A. You ARE an outsider. How can you not understand that?
B. It ISN'T a disease! In some cases it isn't even an impairment. In such a case, who cares if some may say it is a disorder?
C. People that are in trouble do NOT want people to notice them, raise money in their name, etc.... THEY WANT HELP! If you can't help, you could be found of breaking MORE laws!

BTW where were you when I wanted to be in rooms WITHOUT florescent lights, WITHOUT senseless and LOUD fire drills, and WITHOUT closing personal space? Where were you when I wanted programmed instruction? Where were YOU when I EVEN before 9 years of age spoke about how bad the educational system was? It has gotten worse! Frankly, I doubt you have ever done ANYTHING!

BTW I would LOVE to tell you all the laws you are breaking, etc..., but that isn't my job. You might not ever get sued, then again, someone could enter something today, and get sued much later. It HAS happened to others. I HATE parasites that "raise money" simply so they can keep skimming, etc... Who made YOU the spokesperson?

Steve