AANE is the Asperger’s Association of New England, based in Watertown, Massachusetts. I used to have an AANE link in my list of favorite blogs and websites, because there is some good information on their site. I just removed the link, however, because my experience with the organization has not been good.

I joined AANE a couple of months ago. On the membership form, there was a question as to whether I would be willing to volunteer my time and skills. I checked “Yes,” specified that I could write or speak on their behalf, and gave them the link to my blog. I got back a canned “Welcome” message, which was fine, and I got some of their materials by regular mail, which was also fine.

Then, in one of their publications, I noticed that they were going to run workshops on independent-living skills. And who was funding these workshops? You guessed it. Autism Speaks.

Arghh. Brain freeze. The independent-living skills workshops sound great. Autism Speaks…does not.

I knew I’d just had my first indication that my association with AANE might not last very long. But I thought, well, the money is going out of the coffers of Autism Speaks and toward a program that will actually benefit autistic adults. At the very least, Autism Speaks will have less money with which to seek a “cure.” 

However, the connection with Autism Speaks bothered me enough that on Tuesday, I wrote to one of the higher-ups at AANE. She was someone who had responded to a previous request for information some months back, so I felt it was appropriate to direct my email to her. Basically, I wanted to know whether there are Aspies on their paid staff and board of directors. (Autism Speaks has no autistic people in either capacity.)

I didn’t want to sound accusatory or overly blunt, so here was the way I framed my request:

Hello,

I’m an adult with AS, and I recently joined AANE.

I have a question: I’m curious as to how many people on the AANE staff and board of directors have Asperger’s Syndrome. What is the ratio of Aspies to AS-knowledgeable professionals? The ratio seems to vary among different autism-related organizations.

I like the work that AANE is doing and would like to see more of an AANE presence in southern Vermont.

I thought that was pretty nice. I even used the word “curious,” as in “Please don’t feel threatened. I’m just asking is all.”

The response I got back was pretty curious in and of itself. It said, in part:

It is our mission to include AS adults on our staff, as volunteers and on our board.  ALL of our staff are well versed in AS and are understanding and supportive workers.

“It is our mission”? I don’t think that really answered the question. And then capitalizing the word ALL. That seemed unnecessary. And a bit defensive. And like she was raising her voice to me. That is not a good thing to do with an Aspie, raising your voice. Not at all. Not even in email. It feels neither understanding nor supportive.

As for the part about having more of a presence in Vermont, she said that they are stretched pretty thin. They tried to have a conference in Vermont in the fall, but they had to cancel it because of low turnout. Fair enough, except that this is how she said it:

You have to remember the populations in VT, NH, & ME are relatively small and we need to pay folks for their work so a low turnout for events is difficult.

I have to remember that the populations of the upper New England states are relatively small? I live in one of them! Hello? Or was she saying that I have to remember that people need to get paid? Or both? I don’t know. All I know is that I really, really hate it when people say things like “You have to remember…” and then state the obvious. It’s so patronizing. I might be an Aspie, but that doesn’t mean I’m oblivious to my surroundings. In fact, the visual world kind of feels overwhelming most of the time, you know?

However, at the end, she said that if I have any ideas regarding an AANE presence in Vermont, that I should feel free to call her. That was nice.

So, I decided to deal with one issue at a time. I wrote a reply, asking only about whether there are Aspies on their paid staff and board of directors. Again, I was painfully deferential about it, so as not to come across as being harsh:

Forgive me, but I’m not clear—Do you have paid staff who have AS, and do any of your board members have AS?

She replied in the affirmative. Excellent.

Now, be aware that this whole exchange took place over the course of about an hour and a half on Tuesday morning. Given that she’s a higher-up in the organization, her response time was very good. So, I followed up about the AANE presence in Vermont:

Thanks for the clarification.

As for the AANE presence in Vermont…When I joined AANE, I noted that I have skills as a writer and speaker, and I would be happy to volunteer those skills up here in Vermont. I have never done grant writing and so couldn’t help with funding, but I would be happy to speak at schools or other organizations, write articles for local papers, be a point person for information in VT, etc. I realize that the populations are more sparse up here in the rural areas, but if I can help even one or two other Aspies, I’m happy. Of course, I can do this on my own, but I’d also be glad to do it as a member of AANE.

Let me know if I can be of assistance. (I have a lot of trouble using the phone, so please correspond with me by email.)

The reply? None. Nada. Rien du tout. Bupkes. Silencio. I’m running out of languages here. Bottom line: She ignored me. And did I mention that I’d already written to her when I first joined the organization, making the same offer of my time and skills, and giving her a link to my blog? I felt pretty sure she was ignoring me the first time, but on the off-chance that the email had gotten lost, I figured I might as well ask again. So, on this go-round, she was ignoring me a second time.

Okay. I can understand that maybe they don’t need what I’m offering. Well, actually, I can’t understand it, because they have no presence in Vermont, and I’m offering to give them one for free. But I can acknowledge that other people might not think that my ideas are good ideas. (It’s a Theory of Mind thing. I’ve been working on it for some time.)  

However, I don’t know for sure what this woman thinks, because she hasn’t given me the courtesy of a response. Here are some of the things she might have written:

“Thank you for your kind offer. I will have my assistant get in touch with you to discuss your ideas.”
“Thank you for your kind offer. However, your ideas are not a good fit for our organization.”
“I’m terribly busy right now, but I will get back to you within the week.”
“That sounds wonderful.”
“That sounds terrible.”
“Yes.”
“No.”
“Maybe.”
“Go away.”

I don’t really care about the answer. I just care about getting an answer. It’s so impolite to ignore someone.

At moments like this one, I am sure that courtesy is all but dead, gone, and buried in America. I am sure that I must be only one of a handful of hopelessly idealistic and very tired people who understand that when someone writes you an email, and offers to give you their skills and energy for free, you should respond.

I’ve learned not to be surprised by this kind of behavior from the world at large. I’m used to being blown off. I’m an Aspie. It comes with the territory. But being blown off by someone who helps to run an Asperger’s organization is really beyond my ability to comprehend. Is she completely unaware that we Aspies have lived our entire lives feeling invisible and ignored? That for us, words are a lifeline? That we have enough difficulties understanding the motivations of other people without someone at an Asperger’s organization confusing us even further?

I don’t know. But as my dear husband pointed out this morning, my track record with organizations is not good. Academia, the corporate world, religious institutions—I’ve left all of them behind. Now, I can add AANE to the list.

Looks like I’ll have to take my own show on the road. I’ve done it before, and I can do it again!

© 2009 by Rachel Cohen-Rottenberg