I feel a little bit disillusioned with Rudy Simone. Aspergirls was my absolute favourite Aspie resource, for the first time I’d found every single “you’re such a weirdo/freak/shame on the family” moment I’d had explained, understood, accepted. For the first time I found people who really really knew what it was like for me, to know that I wasn’t just a weirdo/freak/shame on the family, but there was a reason for my being a misfit, and it wasn’t my fault. This book was like the best friend I never had.
But after Rudy Simone’s “I’m not Aspie anymore” speech it feels a little disingenuous.
Having said that, I still really do recommend the book. It helped me in so many ways.
First up, I want to make this bit clear: I don’t have a problem with her statement that “I truly don’t feel autistic anymore”.
After a few years of reading through Aspie forums, I’ve read of many people reaching adulthood feeling like they wouldn’t qualify for a diagnosis anymore. If you’ve been reading my posts on Asperger’s on here, you’ll see that I also feel like I might not even be obviously Aspie enough to qualify for one anymore. For me, Asperger’s = negative. So now I’ve managed to reduce the severity of the negative aspects by giving up dairy, I do kind of feel like I’m going native. But I know that my brain processes are still inherently neuroAtypical. I know that however much I may present as “normal”, and however well I’ve learned to navigate this NT world, inside I still think like an Aspie, I still stim like an Aspie, I still loathe uninvited touch like as Aspie, I still have aversions like an Aspie, I still get stuck on social situations I havn’t rehearsed for like as Aspie, I still see things from an Aspie point of view (and don’t see the things NT do).
But anyway, she says later:
Frankly it’s nobody’s business what I call myself.
No one gives a damn, Rudy. It’s when you tell us we don’t have a right to feel comfortable continuing on as Aspie that we have a problem.
So personally, if Simone no longer feels she qualifies as being on the spectrum, I don’t have a problem with that, bully for her. It’s the general attitude of her post that comes across as being slightly sanctimonious.
Because she basically boils it down to:
Autism is a gut issue.
Because something so complex as autism can be explained away just like that? Now personally, I found going dairy-free to be very beneficial in reducing the worst aspects, and some people have even been able to reverse an autism diagnosis in their kids on a GFCF diet (gluten-free, casein-free). However, it doesn’t always work. To say all autism is just gut issues is to greatly simplify the syndrome. If it doesn’t work for some people, it doesn’t work for some people, and they shouldn’t be made to feel bad about it, especially by someone who is supposed to be an advocate!
So far, I’ve only done the CF part of GFCF, and I personally have no plans to go further as I think I’m at an okay place now, and the thing is — well, I don’t WANT to lose my Aspie identity. And neither do many Aspies.
Back on the old AFF board, while there were some posters who wanted to be cured, the overwhelming feeling was that of: “We don’t want to be cured of autism. We just want the non-autistic world to be more understanding of our differences.”
But Simone’s post kinda makes me feel like such an opinion isn’t valid. Okay, object empathy is not really a useful ability. I can’t imagine how it’ll benefit me in any way, but I started to lose it after I went dairy-free, and I’m desperately holding on to what’s left of it, because even though no one else really knows about it, it’s a core part of who I am. Take away my Asperger-traits, and you take away my identity. And Rudy, you have no right to tell me I’m not allowed to feel like this and that if I stopped eating junk I can be a normal person yay.
Truth is, all the books you will ever need on the subject of aspergers [sic] have already been written. But they don’t do a damn bit of good if you’re not going to read them, or if you read them but neglect to put the information into practice.
But I have put the info into practice, and I’ve learned so much about myself. But I’m making a conscious decision to stop here. Don’t try to make me feel bad for doing this.
On her list of female Aspie traits, the last line is:
Will often be very proud and protective of the gifts that Asperger’s/autism has bestowed, but would like to be more at ease in the world and suffer less.
But now I feel like she’s retracting that very statement. Not only did I start to lose my object empathy, I also lost my hyperfocus, I lost my obsessions. These were things which could come in useful one day, it meant I gained loads of skills (they may not have been much use so far, but they may be, one day). It meant that I learned 100s of kanji because my brain focused singularly on it, now I don’t seem to have that drive anymore. Simone is saying, “Stop eating gluten and cure yourself!” And if I did that, what focus I have left will go, along with the rest of my core identity.
So stop it, Rudy. By all means tell us how you felt diet changes helped you, and recommend others give it a try and see if it helps, but don’t come over all judgemental on those of us who don’t want to lose our identity.
I’m gonna close with a quote from Stella, and one from Tina, from Aspergirls, pg 213, which Simone seems to have lost sight of:
Over the years I’ve noticed, as I became more “normal”/less visibly autistic, I have much less focus than I did… Get rid of the disability and you also get rid of the gift.
In my mind, determining the cause [of ASD] is only useful for knowing whether a person has it and then offering that person every opportunity to be valued for their own specific “diamonds”… As far as changing it, forget it… as hard and painful as my life has been, I would not want to be normal.