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Neurodiversity Awareness/Appreciation

Neurodiversity Awareness/Appreciation

Friday, October 24, 2014

Getting An Autism Evaluation As An Adult

I have a question for any of you who are females with autism spectrum disorders. 

Women with Aspergers*/autism who were diagnosed as adults... How do you find someone who is knowledgeable about women on the spectrum? 

First of all I have to explain something... I have never legally been diagnosed with Aspergers. Many adults with Aspergers or autism have never been legally diagnosed, mostly because when we were children people didn't really know much about it. Back then, a child who was nonverbal and appeared completely withdrawn would be considered to have autism, but kids like us were just considered to be weird kids. After being bullied relentlessly by other kids, ridiculed by teachers, and scolded and punished by our parents, we eventually learned ways of "acting normal," or at least of fading into the background where others would leave us alone. Many of us did end up in front of therapists and psychiatrists as we got older, but were considered mysteries by professionals, who diagnosed us with everything from depression to schizophrenia to just plain annoying kids.

Here is an example of why someone who knew me, as a child growing up in the 1980's, would not have suspected I had Aspergers. One of the diagnostic criteria for Aspergers was "encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus." Trains seem to be a popular interest for boys on the autism spectrum, so you might imagine a little boy who only wants to play with trains, read books about trains, watch movies about trains, talk about trains, and gets upset if he sees a train that he is not allowed to look at or play with. If you looked at me, you may have seen a little girl who had friends, and played with normal toys like dolls and He-Men. But people who knew me really well knew my two extreme and strange special interests. Orphans, and the "olden days." 

The topic of "orphans" is an especially weird and morbid special interests. Many kids with autism come across their special interests by chance... for instance, I knew a little boy who was in the room while his parents were watching a documentary about the Titanic. It caught his attention and he started to watch it, and ask questions about it, and soon he was "obsessed" with the Titanic. He wanted to talk and learn about it every day. I remember one moment that was kind of funny... in a group session, the social worker passed out a sheet of paper with a curved line on it. The kids were supposed to use the line to begin a drawing of their own, and then they would talk about what they had drawn. Some of the kids turned the line into caterpillars, or rainbows, or faces. Pete turned his into the Titanic sinking into the ocean. You could show him a random line, and he would see the Titanic. 

The beginning of my interest in orphans may have started when I was five and got a Cabbage Patch Doll. The story behind those dolls was that they were "orphans" (although technically their parents were not dead, because, having somehow been born or hatched in a cabbage patch, they'd never had parents to begin with,) But it may have also started when I watched movies like "Oliver!" (the black and white musical.) Come to think of it, there were a lot of "orphans" in kids' movies and shows back then. Pollyanna was an orphan. Pippi Longstocking was somewhat an orphan. Punky Brewster, Arnold and Willis from "Diff'rent Strokes, Anne Of Green Gables, Annie, Heidi, Tom Sawyer, Pete from "Pete's Dragon," some of the kid characters from the Care Bears movie... all orphans. 

But while typical girls started out obsessing about She-Ra and Barbie, and moved on to boys and clothes and makeup, it was the "orphans" topic that stuck with me. And yes, I did appear to play like typical kids. But when I played with Barbies, the Barbie dolls were orphans who lived in orphanages or wandered the streets on their own. When I played He-Man with my brother, we also used his G.I. Joe figures, which were tiny and, with a little imagination, could become orphaned children who tagged along with the He-Man characters. When I played Matchbox cars with my brother, the cars were somehow orphans. When I played make-believe games with my brother, (yeah, my brother was my usual playmate throughout the years) we were usually orphans, often reenacting some movie we'd seen that involved orphans. 

When I played with other kids, I wanted to play games that involved orphans. Most of the kids were uninterested in this. In early elementary school, I did have some common ground with other kids. I loved to play on the playground (especially the swings. Double especially the swings that were shaped like horses. Do you remember those? What ever happened to those? But I digress...) I loved to play with things like Play-Dough, blocks, my little Fisher-Price record player, the sand box, and junk like that. The problem was, after second grade, I still enjoyed those things, while the other girls in my grade were already moving onto watching music videos, being fashionable, and talking about boys. I was bored silly by those topics and refused to partake in them, and got frustrated when the other girls refused to play Orphans with me. At home I'd usually play with my brother and the neighborhood kids, who were younger than me. I could often get them to steer their games towards the topics of orphans, since they were young and impressionable. 

There was one girl who somehow got as interested in this weird topic as I was. At the same time, we both started reading the Little House On The Prairie books and became interested in the "olden days." When we played together, we'd usually be orphans, living in an orphanage, in the olden days. I had an olden-days themed birthday party, and she and I were the only ones there who were as happy as clams. But by the time we were 11, she was bored of the topic. When she admitted to me that she had become more interested in the things the other girls were interested in, and that she'd only been continuing to play our orphans-and-olden-days games to make me happy. 

I stopped being friends with her after that. And I don't think I had any more real friends after that, for a long while. I had learned my lesson though... while I continued playing "pretend" games with the neighborhood kids for a few more years, when I did make friends with kids my own age, I avoided my weird topics and stuck with more neutral things, like riding bikes or going to the pool. I can count on one hand the number of friends I had, between fifth grade and high school. 

You could actually argue that I never stopped being interested in the topic of "orphans." After all, since I loved to write, a lot of the characters in my stories were orphans on some level or another. In AmeriCorps I grabbed the chance to work with children in foster care. By then, I'd learned a lot more about the real life issues kids in foster care faced, and was more interested in helping them, instead of being entertained and fascinated by their misfortunes. I developed a lot more empathy in junior high and high school, than I had as a kid. 

That whole story is not the only thing that points to autism in my mind... just an example of how a child with an "encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus," can just look like a kind of odd child. 

I have been in counseling or therapy for various reasons, beginning when I was around 12. But back then I was told I had behavioral problems. When I was 17, my grandmother pointed out how I'd always had such sensitive ears as a kid, to the point where I'd scream and cry when someone turned on the vacuum cleaner. She'd read something about autism and noticed that. Shortly thereafter, my mom read an article about Aspergers, and thought it sounded a lot like me. I began to research it myself, and it made a lot of sense. Therapists I was seeing at the time agreed that it was likely I had Aspergers. 

But when I went for an evaluation... at a place which would do it for free and usually dealt with children... I was diagnosed with ADHD instead. That therapist thought I couldn't have an autism spectrum disorder, because I had played imaginatively as a child and because I showed empathy for others. 

I have always believed I have Aspergers as well as ADHD. If I can get a legal diagnosis, in the state I am moving to I may be able to get a lot of support that will allow me to actually live on my own. But I don't quite fit the stereotype. 

There is a psychiatrist in Australia who specializes in diagnosing girls and women with autism. Her name is Tania Marshall. She wrote this article about females with autism. For $500, she will do an in-depth evaluation, even from online, by talking with you on Skype and reading an autobiography you write (seriously!) and other stuff. But that is kind of expensive, and since it is in Australia I don't think it is covered by insurance. 

So, my question to you is, is there anyone you would recommend, in the vicinity of either Illinois, Oregon, or even southern Washington, who is knowledgeable about evaluating adults and females with autism spectrum disorders?

In other news, Kristi from Finding Ninee special-ordered a paper-cut picture for her son Tucker, who loves the color orange. It is a spider for Halloween. I love this, and I am going to make another one to add to my Etsy store. If you have a special idea that you want me to make, let me know! 


OK that is all. This was a really long post. I need a Dr. Pepper now. Goodbye. 

*By Aspergers, I mean "The diagnosis formerly known as Aspergers." It is now diagnosed as autism, but since autism covers a very wide spectrum, sometimes it is just easier to say Aspergers. Also, I recently learned that the word Aspergers should be pronounced "Ah-sper-jers" because its an Austrian word. So no more Ass-burgers, mm-kay?

2 comments :

  1. I love "The diagnosis formerly known as Asperger's" Ha!

    I can offer no help, sorry. I am 44 and after having my own boys on the spectrum, I am realizing that I have, if not Autism spectrum disorder, at the very least, some processing issues. I am so happy that they are growing up with so much more understanding than I had, that is for sure. :)

    I hope you find your answers and when you do, I hope you post about them!

    ReplyDelete
  2. Hi Angel,

    Are you still interested in pursuing this diagnosis? You have been so helpful to me that I would love to help you with the cost.

    Please email me at trishsammerjohnston (at) gmail.com.

    ReplyDelete

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