For followers of the blogs on the Autism Hub, one would have to have been asleep over the last several days to have missed it's mini identity crisis. Larry Arnold touched things off with his Animal Farm posting, in which he made the good point that autism advocacy should be led by autistics (although I am hard pressed to see where anyone on the Hub has suggested otherwise). He also seemed to want to rail against non-autistic adults of autistic children, seemingly for the twin crimes of drawing attention away from autistic adults, as well as hijacking the neurodiversity movement.
My first reaction was "What?", while my next reaction was more like, "WTF?" I mean, I'm accustomed to getting attacked for offending believers in "cures" for autism, but was initially blindsided by reading this in a space I consider "friendly" territory. But I figured that this was just a passing thing, and as I have followed Arnold's blog for some time, and have gained much from reading his insights, didn't think too much about it.
Then this mini crisis continued when Larry posted another time, and Kevin Leitch, having the integrity of the hub questioned, did some public soul searching on his blog.
I've held off on commenting on any of these postings, though I started a few times and then stopped. On the one hand Larry seems to have raised a few legitimate points, namely that autistics should be the ones setting the agenda for what they think is necessary, and that autistics should be in positions of power in organizations that purport to represent them.
On the other hand, I felt a little like Larry opened the door to the family room, threw in a grenade, then quickly exited. I don't mind people forcefully arguing their views, even when it makes me uncomfortable. But I felt that when Larry started making accusations regarding all the bad things parents of autistics on the Hub had been doing, but then not backing it up with specifics, that that was rather unfair. How was one supposed to respond? I'm sorry for all the bad things I've done, even though I don't really know that I'm part of the evil cabal you're referring to?
Larry seemed to repeat a couple times that more attention was being paid not only to issues he felt irrelevant (mercury poisoning theory), but also people he felt irrelevant (non-autistic parents). I'm not sure how this was determined (response counts, number of posts, some web traffic meter?).
So I started thinking. Well, what's the solution to this? Should Kevin limit the number or ratio of non-autistics he lets on the Hub? Should some of us get the hook for not being relevant enough? Do I, as a non-autistic, have to submit all of my posts to the central committee for clearance before I hit the publish button?
After thinking about this for a couple of days, here is what I think.
I don't know why Larry thinks that he and other autistics aren't payed attention to enough on the Hub. I read every post that every person puts up there. I don't comment as much on posts made by autistic persons, but I think that has been because there is a sense inside of me of a)not wanting, as a non-autistic, to hijack their post, and b)being less likely to question what they say about being autistic, because, hey, they're autistic and I'm not, so if they say something is a certain way, then it probably is.
As for my own blog, I freely admit that I'm not the greatest writer in the world. Decades of scientific education tend to beat creative writing skills out of you. But a long time ago I fancied myself a bit of a writer, and I'm trying to revive that part of myself. I have yet to find a consistent voice that runs thru all of my posts. I am a non-autistic parent of an autistic child. I don't think I should have to apologize for that. I have never tried to represent myself as a leader of anything autistic, and any advocacy I have done is primarily on the behalf of my son, as well as trying to create better understanding in the world that he will inhabit.
My writing may be spotty at times, and my topics may occasionally not be acceptable to all. But I don't have the time to worry about trying to censor myself so that I can get by the central committee censors. So if that is what is going to happen on the Hub, then I'm afraid that Kevin is going to give me the axe.
I've really enjoyed being on the Hub. I thought I had died and gone to heaven when I got the e-mail that I was being included. It was also nice to see my web stats go up. There are a lot of nice people that I've cyber-met thru the Hub, and I've considered it one of the prime sources of reliable information regarding autism on the web. Sure, some people (both autistic as well as not) on the Hub blog about things that are non-autism related at times. But I've enjoyed the humor, the pathos, the scholarship, and even the minor disagreements that have occurred. I'm not quite sure how I feel at the moment, but do know that I will continue blogging, whether I am considered a 'good parent' that is allowed to remain on the Hub, or not.
It seems just a bit ironic, that recently many were making fun of those on the EoH group for taking to task their own members who didn't have kids that were severely affected enough. Now we seem to have those on the Hub who would seem to be doing a similar thing, lashing out at those on the Hub who weren't toeing the line as they saw it enough.
I don't mind when someone breaks some eggs, but I do mind when the eggs seem to be blindly thrown at other's houses, and not used to make an omelette. I'm a bit player on the Hub, and easily dismissed. But I think that people like Kevin and Estee have been done a severe disservice, and deserve better.
Me- Joe, husband of a great wife, and dad to two great kids, who were both adopted at birth.
Liz- My ever understanding wife, who manages to wear many hats (mom, advocate, therapist, teacher) for our kids.
Buddy Boy- Born in 2000. Funny, intelligent, inventive, and autistic. Loves machines.
Sweet Pea- Born in 2002. Typical little sister. Competitive, outgoing, and smart. Loves anything pink.