But, I have to be enough of an “educated activist autism mom” to advocate locally for Bobby until he’s old enough and communicative enough (in whatever method) to be a force for himself. I have no doubt that he’ll be capable, but I do doubt whether he’ll be always given the opportunity to self-advocate, given how our world currently works (he who’s fastest, cutest, glibest and loudest wins…) If tackling people at their knees could be considered self-advocacy, he’d be there already, but 3 year olds are rarely allowed into their IEP meetings

I do love reading various autism blogs from all side of the debate, and especially want to hear more from adults with autism (like Amanda Baggs) so I can try and get a glimpse into Bobby’s mind. I know people with autism aren’t all alike (that’s blindingly obvious), but I’m going for whatever insights I can get. It’s also great to read posts from other parents with kids on the spectrum, because the more ideas I can get, the better I can be effective and understanding for my boy.

I guess I see this as a “sharing is better” experience. My kid’s complete experience isn’t going to be the same as Charlie’s (thanks for sharing, BTW!), but we all have bits of life in common.

Just my 2.5 cents worth…

Larry, I’ve appreciated how you’ve spurred me to think. And I much regret not having been able to be in Liverpool to talk about that paper I wrote on autism and poetry; I’ve already been rethinking some of the ideas—-all is ever in flux.

But as an autistic adult and a parent of an autistic child, you have to have both sides involved and working together. Those of us who are grown know what the kids are going through and can sometimes give the parents advice and information that their doctors can’t. But many people still think that someone autistic is unable to think for themself, so the parents need to be there to talk with those people.

Point is, being autistic and being a parent of an autistic child are two different things, with different experiences and view points. Those of us in both camps understand both sides, and somehow we have to work together as equals.

This is one last thing I have to say,(I hope it is the last I really don’t have the energy for it)

And I think it is something for everyone to realise, that for all this has been a war of words in cyberspace, perhaps all of us forget that the others have off line lives too, yes I do, and so does Kev, I still don’t see why he has taken this so badly.

That is as may be, I may not have an autistic child to care for, but I do have myself to care for, same goes for Joel, same goes for Amanda.

I think it has been forgotten on all sides that what we see on line is but a vignette of more complex lives and connections, and it is all too easy only to see one side of a person, this is not a soap opera and certainly not the big brother house, though one could be forgiven for doubting that lately.

I hold to my view about where leadership should come from, I have what I believe to be sound historical reasons for doing so based on experience beyond autism advocacy. It seems the hub was not a good place to raise that issue, and it seems it was never a particularly appropriate place for me to be.

That belief of mine tells you no more about what I am like, than to tell you what party I vote for in an election, or if I vote tells you what I am like.

I could as well be metaphorically hanged in this were it a religious forum and I stated that I don’t believe in women priests. (this is an example not my actual religious position) Or in another forum for taking sides on a contentious leadership issue in local politics.

I am perhaps more used to a rugged style of interaction where ideas and personalities should not be confused.

Nowhere in this leadership debate, if that is what it is, can it be assumed that I have contempt for parents of autistic children or that I have no connection with them offline, of course it has be been said of me by the curebies that I have contempt for parents, but that is also probably said of any parent that won’t chelate there child for that matter.

No where can it be assumed it is part of the core of my belief that advocacy for all autistics, is not supporting parents, because it is a belief in proper services and education, and also in the dissemination of factual information that leads to informed decision. The science is not my thing however, but the politics is.

Where does any of what I have said make me a bad person, who is going to turn child against parent.

Everyone is as guilty as me at some time of having been inopportune in there choice of words, and I can’t really differentiate between the way in which it seems OK to talk to the mercurians and curebies, in one particular way and to each other in another, we are all human at the end of it.

People of a like persuasion tend to congregate together in groups where the atmosphere is generally self supporting, the “opposition” does that too, but they have there fall outs as well. It would be a big shock if they didn’t

I feel simply that I was the wrong person in the wrong place in this hub, that is all, it was bound to end in disagreement, but nobody saw it coming.

I think the solution is to stop the bickering and simply for the two sides to walk away from it, any more words from me will inflame rather than soothe.

I have had enough of this blog world as much as any other agrieved participant in what was never intended to be a row.

Fortunately I have plenty of off line work to do where people seem to be a bit more appreciative and might I say realistic in there expectations and estimation of me.

It was parents who nominated and elected me to the Council of the NAS and it is parents who keep me there as we are still way in the minority when it comes to having any influence on the vote. Do you think I would be serving a second term if they thought I had done a disservice to them and the NAS never mind I have been as forthright and maybe confusing in real life public meetings as I have been on line ?

I think Mike (who has difficulties of his own off line to deal with at the moment) would tell you how people who were once tooth and nail against me, throwing all the same accusations as you will read from the last few days, over time realised I was not against them and indeed had a side to me that has shown in the NAS that autistics are not incapable of the kind of decision making that is necessary at senior level in a multi million pound organisation, where decision has an impact on the lives of many more people than a few harsh rebukes in a blog commentary.

If I were an egoist, I would want to be the only “gay in the village” to make reference to the UK TV commedy “little Britain” (dunno if it shows in the US)

In fact I have ardently been pursuing the line that the NAS needs to become a more friendly place to encourage others to follow and eventually replace me. I think that is beginning to bear fruit but really it is a tough place to be and often intimidating to autistics. That’s not what parents want surely? to do nothing to change the fabric of organisations and institutions where because the majority is not autistic, things are thoughtlessly done in ways that effectively exclude autistic input, unless one is prepared to put up with a lot of discomfort.

My argument with you personally is an intellectual one, I missed not being able to pursue it with you in Liverpool. You strike me as a person who is well worth debating with.

I was sad when you stopped posting at Autismland because I found such power in the ways you chose to describe your life with Charlie. And now, here at Autism Vox, I am captured by how you have managed to weave an even richer tapestry. I didn’t think it was possible. I don’t often leave comments, but I always read and I always learn something new.

I owe the metaphor to Mom-NOS—-and Bud, of course.