Would you socialise with LF autistic people?

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Point well taken, and that's an awkward situation. Yes, for availability of services, health care and educational systems seem to rather "need" to classify someone as either low-functioning or high-functioning. And that's a shortcoming on the part of these systems.

And I guess it gives an obvious remedy, if we can lobby both individually and as members of groups for middle-functioning to be more widely recognized as a valid diagnosis---where a person will probably need some help from a list of potential help but no guarantee which particular help, for afterall each person is an individual---that will probably be a significant improvement, from among a number of possible significant improvements . (and again, as an open field, not dry-as-dust obligation. political activism is not every one's cup of tea, and needs to be approached with feel and texture, just like most things. Some victories will be much harder than expected, some victories will come easily, and this by itself is good reason for a group or organization to be working on several things at the same time.)

It reminds me of how NT's must feel about aspies. OMG would you interact with one of them? Then aspies feel left out, upset, people gang up on them and exclude them from activities.
I find the writings from low functioning autistics to be very advanced and articulate. Those that do type or write. I sometimes wonder why aspies are considered apart of the spectrum at all if you can't relate even slightly to classic autism.

One specific change that can be made across all autism associations/societies is allocating a quota for the various governing bodies to have representation from autistic people across the spectrum. In addition leadership of governing bodies should be reserved for somebody with autism.

At the moment autistic societies are over-represented by health professionals who (excuse my cynicism) are making money out of the misery of autistics.

So true. We definitely need more organizations run both by and for autistics.

One big one that can raise lots of money to work with would be better, and must be run by people that are formally diagnosed!

There is nothing wrong with those who are legitimately self-diagnosed. What I mean by that is that their parents, close friends, and other relatives agree upon their diagnosis with adequate knowledge of the characteristics. I think that people are wrong for calling out the folks at ASAN for being self-diagnosed. I don't think that any of them has wrongly self-diagnosed. I can understand why someone who is highly verbal would have difficulty communicating with and adapting to someone who is non-verbal, though. But please, let's stop discriminating against the self-diagnosed... we don't know the reasons why they weren't able to get a diagnosis.

Health professionals can help out, but they just can't run the show.

Is there a rampant problem of too many self-dx'ed people running or being on the board of organizations? In 15 years I've never heard of any self-dx'ed person in such a position. Seems like being worried about whaling in Nebraska.

When I was 17 in 1980, a PhD psychologist did not take my father's violence seriously.

When I was 23 in 1986, I talked with another PhD primarily about career counseling. At one point he said, '_______, it's going to have to come down to how much you're willing to compromise.' I have no idea where that came from. It later occurred to me, I guess they just periodically throw out wildcards, or do something 'dramatic,' trying to shake up the patient.

Overall, my results have been 0 for 4, or one-half for 4 (depending on how you look at it, and this above career counselor is the one-half). Generally, the field is filled with egotists, prima donnas, 'be-righters,' people that love to hear themselves talk, people who have issues themselves and I suppose are trying to take the high road and help both others and themselves and end up doing it in a heavy-handed way and not with a light-touch.

I am aware that people have had good experiences with counselors, psychiatrists, psychologists, etc, etc. More power to you. That has just not been my experience.

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Okay, people struggling with depression or anxiety, which is reasonably common for people in general and perhaps somewhat more common for those of us on the spectrum from social difficulties and social isolation, you can see a regular doctor (like an internist or a family practitioner) and this regular doctor can just as well prescribe an anti-depressant. And I also understand that depression can start out situational and become biochem. So, a person is not 'stuck' with a psychiatrist. It is free choice. And from the little bit I've read, it seems no doctor in the world can predict whether a particular patient, for example will respond to cymbalta. The body's biochem is just too complicated. In a very respectable sense, it is trial and error.

This is 100% the reason why health professionals need to stop running these associations. Ironically the very thing they accuse us of not having (empathy) is in short supply when they come up with ideas on how best to represent the interests of autistics.

Parents like myself who stay just above the poverty line to keep the psychologists and psychiatrists on the golf courses and driving luxury cars, there is clearly a conflict of interest.

As a self DX I actually do agree with you. My main interests in participating in Autism Victoria here in Australia are to represent the interests of my "formally" DX daughter. I have no interest in representing anyone else.

By the way finding a self DX on the governing body of a national autism body is as likely as Sarah Palin shooting a kangaroo in Alaska.

I'm always pleased for the opportunity to speak to someone else who is autistic, regardless of their label. I have more in common with most "LFA" people than most NTs.

i would talk to a lfa if i was in the same room

Which I suppose feeds into the whole thing where the psychologist has to be 'Right' with a capital R. Instead of trying out a good (not perfect) idea with feel and texture, and if it works, let's keep rolling with it. And if it doesn't work, let's more sideways and try something else that is promising.

In a similar way, a school might spend several months doing an evaluation and coming up with an IEP (Individual Education Plan), and then stick with it clunkily. And that's the mistake, that part at the end, sticking with it clumsily and clunkily even when it's clear it's not working, because so much has been invested in it up front. Whereas an experienced teacher or tutor can smoothly try three new things in a single week.

Please note: I AM NOT A PARENT. but I have lived the life and have had both good and bad experiences with school, primarily with speech therapists, and with psychologists apart from schools. I also care about my sister's children and other young relatives, and I'm all-around a pretty alright guy

Not just Psych's. We had an OT who dealt with sensory issues/behaviour problems claiming to be a government endorsed specialist on autism (her name was posted on the federal government autism website).

What she taught us is how money hungry charlatons with diplomas operate by preying on parents with autistic kids, She charged almost $1000 for a single assessment (3 sessions plus a Kinder visit) and the outcome was she gave us a chart that I could have put together on clipart that she provided to our kindergarten.

The kinder teacher spoke to us and told us the information provided by the OT was so generic and out of alignment with my daughter's specific sensory issues they could have looked up the information google and told us for free. To make matters worse the OT tried to come back and recover the charts (obviously to sell to another sucker).

In another example our daughters very first speech therapist told us to our faces she would not release our daughter's speech assessment until we paid in full. My wife and I were stunned - we needed the report to get government support funding - this woman knew it. Luckily our current speech therapist is not so money focussed but even she cuts her appointments sometimes 10-15 minutes early to squeeze in other appointments.

There is little to praise any of the health professionals we saw. Perhaps our psychiatrist wins the booby prize. He gave us absolutely no advice at all except to repeat what was written in the speech therapy and psychologist reports verbatim to us. That'll be $600 please!