I support people who don't have an official diagnosis because even in progressive countries it can be hard to get a straight-forward diagnosis. However I'm not sure about "self-identifying" as having AS. And just to be clear, I'm NOT talking about people (many of which are on this forum) who think/know that they're Autistic but have been denied access to a diagnosis through no fault of their own. Instead I mean those who outright refute the diagnostic process. That sounds as if Autism is just a fashionable choice rather than a medical fact. You can think that you may have Aspergers, you can suspect and strongly believe you're an aspie and I'll hold your hand every step of the way but never presume to throw away our science, as without science we are nothing.
I know what you are saying, and ordinarily I might agree further, but I could easily make a case for those who may disagree, as my thinking is divided here.
First of all, regardless what condition one has, we cannot assume the nature of their condition is such they could get diagnosis or treatment or that they could trust another to do that, or open up to anyone about any limitations, and especially if they heard how tough it is to find a doctor to accurately, promptly and fairly diagnose.
Secondly, what is the diagnostic process? Dylan went through ten doctors and service providers and none of those attempted to diagnose, despite us pressuring them to do something as core symptoms were there. They wanted to be patient, play ignorant, or just want to push him off to feeding, behavioral or occupational therapy without a diagnosis first.
So, people are just supposed to go through the medical system and process hoping they get lucky and find the perfect doctor to do the right things in a timely and reasonable way? Their conditions could be worsened by rejection, delays, incompetence, a lack of listening, arrogance, misdiagnosis, pressure to get treatment before diagnosis, etc.
If it were not for my strength, patience, and ability to see through all the medical wrongs, and my abilities to research and analyze, then our one child and my wife could have never been diagnosed properly. So, many caregivers and afflicted could be at the mercy of the medical establishment who is in no hurry to do things, or who cannot do things reasonably.
It is not caregivers or those with such conditions' fault the medical community does not have all their things in order. There is no consensus of what to do to diagnose Autism. Do they have a mandated screening for that, at a certain age, or when a certain number of core symptoms are met? No. Most would not even screen, unless it likely fits a perfectly stereotypical very severe image, or if a parent threatens them of lawsuit. In our case, nicely asking to screen went nowhere.
What is the standard test or diagnostic criteria for Autism? A simple Mchat, an ADOS test, the ADIR, or about six other tools that can be used, to screen for that condition. Or the DSM? If family doctors and pediatricians will not screen Autism by any of those items, that means specialists must, like a psychologist, psychiatrist, or Autism specialist that can involve very long waiting lists, higher costs, or more fears.
Dave, you mention we need Science. From what I understand, medical science is an inexact science. As well, there is yet to be a cure for Autism and related conditions, and no widely recognized treatment that helps all that have those conditions. So, perhaps many that choose self-diagnosis too do not want the pressure of long treatments? Or perhaps many love who they are, and feel a need for acceptance?
So, these persons may just want to off the record know what they have, without additional pressures or formal stereotype. Or maybe others fear a doctor will give the wrong diagnosis, and so worry of a lifetime of being seen as someone they are not? There are so many variables that come into play, so I cannot unfairly judge why any one person might rather self-diagnose, and as we had to too for Dylan before his diagnosis.
I am not arguing, but just showing another side to this. Personally, I commend anyone who is willing to research things on their own and admit they could have a condition. This society is often in denisl of things, or wanting to hide things, or wanting to wait to determine important things. I love those who are proactive and use their wisdom, too, and can sometimes question things.
Yes, I do feel a medical diagnosis would help in the long run, so if that is possible through submitting evidence and asserting oneself and demanding a prompt screening I am all for that, if that family wants that or is able to do that. I am not into though dragged out or medical agendas, or putting rigid protocols above the immediate needs of the one with that condition and their families. Too often that is the case.
The fact that more cases of Autism are reported though could mean some hope in the right direction in terms of more diagnostics, so I would not discourage anyone from trying to get a formal diagnosis, like we did, without giving up until another listened. However, for all the reasons given I certainly could understand why one would not want to go through such a process. We had to, as to us the condition in Dylan was obvious, and we had to protect our children's future rights.
Nice post though. It caused me to think of the other side to things.