Creating a Professional Quality ASD Survey: Getting the fact

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This is my first post on this forum, I have never been a member before, but I have spent some time perusing the site and reading the posts.

I believe there is a serious lack of reliable information out there regarding Autism-spectrum disorders and their impact on the lives of those living with them. There is data available regarding prevalence of the disorders, and employment rates, impact on the economy due to individuals with ASD receiving benefits, etc, but very little on the lives on these individuals.
What age do they get their first job? Their first romantic partner? How many of them who want to have kids actually do? How many of them acheive their dreams?

It is very difficult to deal with a disorder such as this one, or make life goals while dealing with such a disorder, without sufficient evidence to determine if that life goal is even possible. For example, in the UK, only 15% of adults with autism are in paid employment. Now, if your goal in life is to have a successful career, knowing you only have a 15% chance of even getting a job, is not good news. You know that you are going to have to work much harder, be more focused, and more determined than anyone else to achieve that goal. Knowing this early enough makes they goal possible. The same is true with other milestones regarding relationships, marriages, divorces, etc. Having the cold hard facts allows you to predict, to plan, and to more easily deal with what lies ahead.

However, the only "data" I have found is forum posts on sites such as this one, and others, where people use anecdotal evidence or personal experience as fact. Even when a "poll" is conducted, they have a ridiculously small sample size, are poorly managed, have no "control", and usually degenerate into nothing more a forum argument anyway.

What I am proposing is a professional quality, controlled survey to encompass all of the major life events and goals that most people, whether they have an ASD or not, would go through. Neurotypical individuals and Low and High functioning Autistic individuals, and individuals with Apergers syndrome would all take the same survey, that way we can compare the results. Knowing that the average age a young person with aspergers gets their first job, for example, is not particularly useful, unless we also know the average age a young person without aspergers gets a job.
It may also turn out that a certain country has better prospects for people with ASD than another, or that the odds get better or worse as one gets older. These are things we just don't know at the moment.

I have prepared a list of example questions that would go into the survey, these are subject to change and modification. I can post these if requested.

My intention at the moment is to post the survey on one of the common online survey sites. This will allow the data to be properly analysed and graphed.

In terms of the survey methodology, I have chosen a standard confidence level of 95%, and am considering a confidence interval of 4. This means the sample size should be 600. However, it's not as simple as that, since the survey is open to NT individuals, and individuals with various grades of Autism spectrum conditions. If 600 NT's answer the survey, the results will be useless. We would need 600 NT responses as a control, a further 600 from Low functioning individuals, and 600 from high functioning, etc.
Then we have to take into account geographic distribution, if all of the survey respondents are from the US, for example, the survey will less useful for those not living in the US. I am not a professional statistician, so if I have made some error in these calculations, please, correct me.

If enough samples are obtained, we could really do something worthwhile here. This could be a major step forward in understanding Autistic Spectrum disorders and their effect on lif quality.

I now open the floor to debate.

I had a milk round and a paper round when I was 13 and when I was even younger than that I used to wash cars for a living.

If I could have I would have swept peoples chimneys as well.

I was quite entrepreneurial as a child.

Being that the survey would include a control group of NTs, and then also have responses by diagnosed autism spectrum people, would the responses of self-diagnosed, self-suspected, or otherwise unofficially diagnosed people also be included or welcomed? Just wondering if this category, of which I am one, would be helpful to also hear from, or not as the case may be.

Because it may be thought of as an inherently ambiguous group -- I have already run into at least one diagnosed person on these forums, who seems to be very rejecting and skeptical of those of us who are self diagnosed, for example -- I realize that it might be considered a grey area in terms of accurate data collection.

I even frequently hesitate to post advice or comments around this place in general, because being self diagnosed makes me feel less legitimate even when and if I strongly relate to something extremely Aspie that a formaly diagnosed person is talking about....

I don't think you're illegitimate.

BirdInFlight, that is a very important point, I hadn't considered that. If the survey is to be considered important enough by the media, or by the medical communicty (which I think it could be) we would have to be reasonably sure that the people who claim to have an ASD, actually do have it.
There seems to be a lot of self-diagnoses going around, and while some of them are no doubt accurate, many will not be.

I think, having a seperate category for self-diagnoses individuals may be the best option, even though it would mean having to find a lot more respondants. This way, if it was alleged that the self-diagnosed cases were not genuine, it would be a simple matter to represent the data showing only the diagnosed individuals.

Yes, I totally understand and can embrace that there's a risk factor in including the input of the self diagnosed only because some may be accurate and some may be mistaken, confusing the accuracy of the results.

I say that not to upset any other self diagnosed people here, as I'm one myself, and I do accept that I could turn out to be mistaken despite everything.

A separate category for folks like me might be best. At worst it would be left out of the final results, at best it could be interesting to see how it compares to the NT and formally diagnosed results.