Once autistic people have equal power, it won’t matter who speaks for them: people are people.

The vaccine argument is causing a lot of harm, but not because those who don’t believe in a link are engaged in the argument. It causes harm because it exists. Those who try to squash the belief in a link between vaccines and autism may not be engaged in the type of activities that directly benefit autistics, but if no one puts down the belief in a link by the general – scientifically illiterate – public then many of those direct actions will likely come to naught.

The non-autistic people, especially parents, who believe in the link are not likely to listen to scientists, non-believing celebrities, or autistics when it comes to arguments against a link. Those with the most chance to sway their opinion are the parents – the non-autistic parents – of autistic children and adults.

A quick reference to a quote from Phil’s essay on allies:

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But many [family members] are not [strongly motivated], because they have bought the “cure” model. Parents of young autistic children and those of newly diagnosed children often get only that model from the “autism establishment”.

The presence of parent allies in such situations — who can speak and relate to these parents on a parent-to-parent basis — could really counteract that one-sidedness and open their minds to other possibilities, in ways that even the best communication from autistic self-advocates who are not themselves parents (such as Jim Sinclair’s classic essay “Don’t Mourn For Us”) cannot, at least until they are ready to hear it.

Parental motivations change as personal goals move up the Maslovian pyramid: now it becomes a matter of rights and access.

It is easier to find allies among parents of kids whose issues now revolve around access to education, employment that truly leverages their abilities, stable and safe living situations, and so on. They have begun to understand the battles we are fighting; they have begun to fight the same battles themselves.

Where parents of kids whose issues are at a more basic developmental level are not receptive to our message, they may be more receptive to the voices of other parents — particularly as they look towards the future and seek out other parents who have “been there” before them and worked through the challenges they have as parents. This is another situation where parent allies may be more effective than even we can be, at getting our message heard and spread.

Allies — even those from the “more able” sector — can help by helping us be heard and by validating what we say. Sometimes this is the best counter-measure against those who seek to invalidate what we say and who we are.
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We all have our roles to play, even if that role isn’t always accepted or appreciated.

“Either way, she wasn’t talking to me but at me.”

From your comments, you seem to think that the comment Kristina left here was directed at you as an autistic person; my experience with Kristina, both through her public writing and personal correspondence, is that her comment would have been the same no matter who the intended audience was.

This is a general problem when we only know someone through their public writing; we can’t help but project our own ideas of what we would have meant had we written something. For example, I usually expect to see friendliness and politeness when I see a comment from Kristina, and that is what I see. You expect condescension and disregard, so that is what you see.

I’m not saying that NT’s can’t be good allies, they can. But they must never put themselves in a leadership position in any way, which is how I view what Kristina is doing whether knowingly or not. I’d rather be represented by an autistic I disagree with, like JM, than a non autistic person. I’m sure this doesn’t make much sense to you but once autistic people have equal power, then I defer to the autistic that at least is being given a chance to speak for us rather than a surrogate. The vaccine argument is causing a lot of harm I believe because it is taking our limited time we have in the news and monopolizing it with trivalities (sp?) that aren’t important for inclusion, education, opportunity, independence and safety which is what most autistic people struggle with their entire lives.

That’s a common issue with how people relate @ autistics. The misconception often creates a cycle of miscommunication which includes autistics relating similarly to others.

It reminds me of how some will find it offensive to not have eye contact when you speak while others are challenged by it. Being ignored to me is a threat like being path of a truck and I better let someone know I’m there or get run over.

Lot’s of autistics are in similar situations all the time. Other people often don’t even recognise their own tire marks they inprint on us.

Either way, we are often in the room when we aren’t acknowledged and avoiding us doesn’t always make us go away. Although some people work toward that goal with enough effort that they must believe they can accomplish it.

Why not report that angle then? That would have been far more interesting than what you wrote, at least to me. Which is more important, the vaccine argument presented or the fact that the reporter didn’t care to interview an autistic? Which is the bigger story and more important, the vaccine argument or the fact that the press had no interest or did not pursue interviewing an autistic person for their view point?

“In my day to day to life, and in my past, there are and have more more than a few individuals on the autism spectrum.”

Thanks Kristina, I never would have guessed that.

See Brett, this last comment of hers is exactly what I’m talking about. She writes this comment like I have no idea what her blog is about, reminding me that she has people with an ASD in her life. Good grief is that condescending. I wonder if it was written to me or for others that may read your blog and not know who she is. Either way, she wasn’t talking to me but at me.

I suggested that autistic adults be interviewed for Newsweek.

I should have been more clear. What I am really wondering is this: Do you really believe that Kristina Chew’s – or any other neurodiversity supporting parent’s – blogging is the reason that autistics are invisible to the mainstream press?

I have very good ideas of why “this happens”, and it doesn’t have anything to do with blogging by parents of autistic children. Do you think the autism advocacy would be better off if we weren’t blogging, if we didn’t take the opportunities that present themselves to us to get our message out and try to counter the anti-autism (and autism-angst) crowds?