Posted in Advocacy, Identity

From the Archives: When Doctors and Psychologists Hold Women Hostage

I wrote this piece to give women in particular practical steps on what to do when they know they are Autistic, but can’t get a diagnosis.  The good news is, the general consensus in the Autistic community is that self-dx is completely valid, and this is true more so now than when I realized I was Autistic 2 years ago.

The interesting thing is that if you tell people that you “realized you were Autistic” in an interview, they will, in fact, print that you were “diagnosed as Autistic” anyway since it’s hard for neurotypicals to believe that anyone would self-dx anything and tell people about it.  I get that.  Web MD tells a lot of people they have conditions they do not in fact have.  However, this is different. This is something we do in the Autism community not because we looked up “symptoms” and decided we had them.  Instead, we realized we didn’t fit into society and wondered why that was.  We started talking to others who were like us, and realized we had more in common with those “others” than we did with people we’d known our whole lives.

We pieced together that if many of them had formal diagnoses of Autism and we were so very like those people (and yes, our “symptoms” might be a little different from each other, but we know them in such a way that it was impossible to shake the idea that we were, in fact, like them), we simply had to be Autistic, too.

We had to be.

And some of us went to doctors or psychologists who said we weren’t Autistic.  And some of THOSE doctors had never seen an adult female presenting, so they didn’t know what one looked like when one did, and others knew that we were Autistic and hid it from us because they believed it wouldn’t help us to know.

Instead, we learned, over time, that we were Autistic by being accepted by the people with-and-without formal diagnoses as being part of the group.

We shared our common stories and realized that even if what, specifically can “set us off,” we all had meltdown variants and/or had learned how to avoid them, over time.

And we all took refuge in rules, so sometimes we fight amongst ourselves because the rules we, ourselves, internalized, do not allow us to be open to other perspectives.  As a Catholic Autistic, I get a LOT of flak from people because of my beliefs about abortion, contraception, and marriage.  They believe it’s because I’m rigid, however, I am open to their perspectives being different than mine and want to chat and learn because even if we disagree, I care about them as people and want to learn about what they find important to them.  They, however, rarely are interested in hearing my perspective, so we just don’t talk about those things and sometimes they blow up at me and block me because I said something I believe they disagree with.  We can be a touchy bunch.

Regardless, we are a community and we are very alike in the ways that matter, even if we don’t like each other all that much sometimes.  It’s like when you get a bunch of people together at church and they gossip and fight with each other constantly, but if you add a new person into the mix, they’ll keep gossiping and fighting, and yet all come together to “get” the new person.

That’s family.

So, here’s what I wrote about what to do when you can’t get that diagnosis.

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Posted in Advocacy, Autistic Identity

I Wish I Could Say I’m Aspergian: Why We Have to Join Up “For the Team”

Every so often, you’ll meet an Autistic who insists on saying that he or she has Asperger’s Syndrome.  That term has been removed from the diagnostic manual because people OTHER than us decided on Autistic being the blanket term.  While there’s good and bad in that, the gist of the reasoning was that those who got the Asperger’s label weren’t getting help, so it was better to call us all Autistic.

That was remarkably helpful of the medical establishment, which is sort of rare.

But had I been in the meeting, I would have said, “Can’t we both be Asperger’s Syndrome, instead?”

But since Asperger’s ONLY (to them) meant “high-functioning,” to ask that question would be tantamount to saying that I wanted to erase the “low-functioning” people from existence.  I don’t believe in functioning labels, but if I DID, I need to support my Neurosiblings who have been considered “low-functioning” first.  As such, I have to bury Asperger’s Syndrome.

Which is sad, I think.

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Posted in Autistic Identity, Parenting

To Push, or Not to Push: Figuring out How to Parent Autistics

One of the things that’s difficult about being an Autistic parent of an Autistic is knowing how to raise my own kid.

See, my husband and I are Autistics of the generation that, in general, few people knew they were Autistic.  We were the “do it and shut up” generation which meant that we were told to do things the same as our peers whether or not it “felt weird” or “hurt” or otherwise didn’t go as planned.

Obviously that only works so long, and our parents realized, over time, they had pretty weird kids.

[Image: A little blonde girl, aged around 7 or 8, holds her head against a chalkboard with writing on it, and looks down; she has a pink barrette in hair and wears braids. She looks stressed out.]
My husband used to read a lot; using his reading, which is something in white culture is considered an advantage, especially when the child reads books above grade level, to hide.  I used to do the same, but at recess, I’d swing a lot.  A LOT, as in, the whole recess, and use the time on the swings to imagine my fantasy kingdom.  Neither strategy makes a kid a lot of friends.

Side note: hiding to read or playing board games by yourself is considered anti-social in Black culture and you will be harassed and told by the adults to do something else if you use this common Autistic child trick as your escape method.

I got invited to birthday parties when we had to invite everyone, and my asthma and severe allergies meant that I was never going to have to stay overnight in a house with a dog, so I could cut my visits short.

Over time, though, they stopped inviting me, when it was an option not to invite the entire class.  Parties became subtle, and I just assumed no one had them anymore.

Oh, they had them.  They had them, and I wasn’t invited.

Continue reading “To Push, or Not to Push: Figuring out How to Parent Autistics”