Is self-diagnosis okay/valid/a good thing?

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If you accept the current prevalent theory that the dramatic rise in autism diagnosis is primarily due to increased/improved identification of the condition, then that means there are a lot of people, especially older, with autism that were never diagnosed. In fact, as I consider the math, it would mean undiagnosed likely outnumber diagnosed, perhaps greatly.

Therefore a large number of 'self-diagnosed' is not surprising to me. And if they have done any research at all on it I am very willing to accept it at face value, as quite possible, perhaps even probable.

Indeed. I have written previously on Wrong Planet that I believe that diagnosticians are woefully ill-prepared to deal with the influx of ASD diagnoses, and, as such, many adults who believe that they probably have an ASD will be seeking (demanding) diagnoses. We are the boom market, if you will, but the diagnostic industry is failing to catch up.

Unfortunately, I believe that this scenerio has caused a diagnostic trainwreck without enough qualified diagnosticians, cost-prohibitive evaluations, time-consuming and long-distance visits with diagnosticians, and, most of all, the mistaken idea among too many diagnosticians that otherwise undiagnosed adults will present with exactly the same characteristics and factor diagnoses as children. As a result, many adults (like myself) who probably have undiagnosed ASDs get botched evaluations. The only option to them is to research the topic and its diagnostic criteria, and evaluate themselves using the best available screening tools.

The world is changing, and people are changing with it. Some are more affected, some are not. I have been making myself change. Some things are working very well. You may see a time when personalized medicine will be more important than psychology. Brain function/diet/physical health has many different characteristics that we are only beginning to understand.

For most, the diagnostics, and the pills aren't really working very well from what I have seen.

On the contrary, you may see way too many psychologists than what are needed when the understanding of what is really going on comes to view, and the statistics fall.

YNH, thank you.

Thanks for that graph Toy Soldier. It certainly puts the under-recognition in the past in starker perspective.
Could one of the clever maths supremos here work out something for me using that graph??

Suppose that the current rate of recognition (1 in 88) gives us a current total population number of 100,000 (just imaginary, yes). Also suppose that 1 in 88 was the true rate of incidence all along (again, just suppose). Then considering each bar as a population of 100,000 - how many in total are on the spectrum and unrecognised?

PS: it would take me years to solve that compared to your two minutes or less (Yes, I repeat, I just made up those numbers!! !)

I am slightly confused by your question, B19.

If I've interpreted you correctly:

1 in 88 out of 100,000 gives 1136 diagnosed autistic people
1 in 91 = 1098
1 in 150 = 667
1 in 166 = 602
1 in 250 = 400
1 in 500 = 200
1 in 1,000 = 100
1 in 2,500 = 40
1 in 10,000 = 10

There are 900,000 people in total, of whom 4253 are diagnosed with autism, 10224 have autism, and 5971 are undiagnosed.

Of course, these numbers have no real world application.

Yes there is no validity in the numbers, though it still gives an intriguing picture and thank you for applying that expertise Am I right in thinking the unrecognised autistic people are 59% overall in this exercise?

I am totally lost on the math here. lol

All I know is that when I was growing up, diagnostically speaking, there is no way I would have been counted within the 1 in 2500 in 1985. Or the 1 in 1000 in 1995.

It should be noted that the latest incidence, is 1 in 66.

In Utah, it is 1 in 54.

I also don't think the 5 to 1 ratio in favor of men holds water, either. I believe more women will be diagnosed over the coming years, thereby increasing the incidence. Look at the man-woman ratio on WrongPlanet.

I wonder what the true rate really is.

Apparently it depends on the medical industry. They could say everyone has high functioning, or doesn't tomarrow?

With the practice of genetically modified foods, additives, preservatives, toxic medications, man made toxic materials like carpets, car interiors etc, the lack of personalized diets to fit an individuals needs, the stress levels of the work invironment, and the hussel and bussel of life that promotes a flight, or flight additude, I don't see any of this getting any better any time soon.

It strikes me that we're - quite likely - skirting an important issue: that of the adaequationis medicorum to administer tests to determine AS, a condition that they can only ever imagine, being neurotypical. AS diagnosis, a mainstream prerogative, seems to me intrinsically problematic because it is a (so-called) 'normative' protocol.

At the heart of my contention is the issue of whether AS is abnormal or merely non-normative. If one believes that it is the former, then the extant diagnostic protocol could be acceptable (with a great deal more fine-tuning). If the latter, then we are confronted with the problem of 'expert' physicians with insufficient knowledge diagnosing (and, indeed, medicating) a condition essentially alien to their imagination.

It's not my intent to valorise Aspies: There is no glory or comfort in living at a right angle to most of humankind. But when a doc asks me if I see the world as patterns - my USP, for want of a better word, is seeing the world as a data-lattice - and I respond in the affirmative, I can see that s/he has not the faintest about what I'm speaking of. It's an umbrella description - “pattern”, “cat's cradle”, &c - but, for the usual physician we approach for an AS diagnosis, it's all imaginary.

You'll be asking: So, is an Aspie best informed to test for a person for AS? In my personal opinion, yes. I may have insurmountable problems comprehending die Umwelt - leave alone understanding it - but I have never once made a mistake recognising another Aspie, even though we might be as different as chalk and cheese.

This is also why I think that although we must today perforce depend upon tests designed by (so-called) NTs for a determination of whether or not we have AS, we ought not to knock our sense of being Aspie. We privilege a 'normative' medical diagnosis of a non-normative Weltgefühl at the risk of downgrading our sense of ourselves as being not abnormal but extranormal.

I agree, this is what makes clinical diagnosis problematic.

I don't understand these ideas at all. What is this supposed to mean? I don't understand the distinction between abnormal and non-normative.

This seems like using political language to declare medical consensus invalid or declare the perceptions of NT people about autistic people somehow invalid.

I mean: a marine biologist doesn't have to use self generated sound waves to perceive his or her environment in order to know that this is what dolphins are doing. Why should neuroscientists or psychologists have to be autistic in order to study autism?

People wouldn't even be able to self-diagnose themselves with autism if it weren't for those pesky NTs who recognised and defined Asperger's/autism originally.