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 Back then, a child who was nonverbal and appeared completely withdrawn would be considered to have autism, but kids like us were just considered to be weird kids.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?

Tuesday, October 21, 2014

Doing Art To Keep From Flatlining

Hello again bloggy friends! I have bad news and good news. I always like to start with the bad news first, so stay tuned for the good news.

The bad news is not terribly bad, so much as it is just nothing. Ever since returning from Portland, things haven't been going great for me. Not horrible... just not anything. I haven't been getting a lot of subbing jobs. In fact I have only subbed once, for half a day, since I got back. I am so broke that I can't even afford to go to equine therapy any more for a while. I've been having trouble just getting out of bed in the morning, because there just isn't much of a reason to get up. Not even to take my Small Dog out... she is perfectly happy to lie in bed and snore next to me for as long as possible. I've been focused on trying to look for a job out in Oregon again, but the pickings are slim. So mostly I have just been existing with a sort of dead feeling. Mostly if I don't have to sub, I sleep in until late, get up and go downstairs and take the dogs out, then watch TV, take surveys online to try to get soem money, and look for jobs... and then when my mom comes home she usually yells at me for something, and then I feel even worse... and then I continue watching TV, doing surveys for money, and looking for jobs, until it is time for bed. Then I'm not really tired because I slept so long, so I just lie in bed with my eyes closed until about 4 am, at which point I finally fall asleep, and it starts all over again!

The good news is that one thing that has bringing me a little bit of joy is doing some arts and crafts. Before I went to Oregon to visit, I made a picture frame for my aunt for her birthday. I didn't have a lot of money for craft supplies or anything else, so I made it completely out of recycled materials... cardboard, and strips of magazine pages. It came out pretty cool. So I started thinking of more things I could make with magazines and newspapers. I even started an Etsy store, on the off chance that maybe my new hobby can help me get ahead with my finances!

Here are the first two things I have made.

And check out my Etsy shop, too... by the time you read this, I may have some more things listed! You know, "outsider art" is a thing... and since an alien is certainly an outsider, maybe my art will be worth something! In fact, art like this could go for as much as $50,000,000,000,000,000 per piece... but you can buy it for the low, low price of $10, with free shipping!

I love making these pictures. It will be even easier if I get an exacto knife, since I've been using clumsy office scissors to do all of the cutting. Do you have any ideas for other pictures I can make like this? The cat was the first idea that popped into my head, and then the hummingbird because Auntie Em loves hummingbirds and she gave me a picture of a hummingbird which is in my room now. I was thinking of trying a horse next. And maybe, for Christmas, a Christmas tree!

Okay. That is my update for today. I am glad I blogged, even though my listless brain couldn't even get motivated to blog for the past week.

And now I'm going to go... do more art I guess!

Thursday, October 16, 2014

Home... For Now

This is a picture I took by the river one morning while walking the
dog. It was so foggy, when you walked on the pier you felt
like you were walking into nothingness. Isn't this a wicked cool
I am back in Chicago. I am feeling unexpectedly more gloomy than I thought I would. 

I had an awesome time in Oregon, and I knew I was going to miss Auntie Em, Uncle J, my cousin BT, and the dog and cat Roo and Romp. But I guess I just expected to come home and feel normal, since I was returning to what I was used to. Instead... aside from a very heartfelt welcome from my dogs Lily and Trixie... I feel sort of empty. I feel like I'm in Purgatory. 

My parents were mildly happy to see me, but the big focus was on, "It was so clean and orderly while you were gone." By clean and orderly I mean, if I make food and I wash the dishes and I put a pot back in the cabinet in a somewhat different position from how I found it, or if there is a single crumb on the counter, my mom rips me a new one. I can't leave my computer out in the open even. I can't leave my shoes by the door like a normal person, or even in the basement... they're supposed to be up in my room. I can't leave my car keys on the counter... they need to be up in my room. I can't leave my computer downstairs at night... it has to be up in my room. And if I manage to remember and accomplish all this, there will surely still be something that pisses my mom off. 

It gives me renewed strength for trying again to move to Oregon. 

But on a cheerier note, I did have a great time out there! It was more low key than my last trip out there, because my aunt is recovering from surgery and didn't always have the energy to do a bunch of stuff... but we still did a lot, and plus I really enjoy just being there and living ordinary life with them. Like hiking with my Uncle J and Roo, and going to the grocery store and the library with Auntie Em. Auntie Em and I did some canning on a small scale... we made three jars of strawberry sauce/jelly. I also helped her fix up a breadbox that she bought at Goodwill... she had sanded and stained it, and I helped by scraping the paint off of the glass cover and Modpodging a picture of a hummingbird onto it, and by helping her choose a handle for it. It turned out really nice. We also did some sightseeing at Multnomah Falls and some other cool places, and went out for lunch and stuff.

On the weekend I got to go down to E-Town to visit BT. I took the Greyhound bus down by myself (it cost a whopping $12) and wandered around the town for a while until it was time for BT to get home from work, and then I walked to his work and met him there and spent Friday, Saturday and Sunday nights at his apartment. We went to the Saturday Market (which is like a farmer's market/craft fair) and walked around the college campus and went to some bookstores, and mostly we watched a lot of movies. I was so happy to be visiting BT! Of all of my cousins, he is the one I grew up with the most. Even though he lived in Oregon and I only got to see him for one or two weeks in the summer, and then only for a few years in a row, he is the only cousin my brother and I had who was somewhat close to our age. My next closest in age cousins are nine years younger than me, and nine years older than me. Whenever BT came to Chicago my brother and I would be over the moon! I have a lot of memories of playing in the lake in Wisconsin with him, where he told me that there were giant fish called Megadeaths living under the raft that would bite me if I swam underneath it, and of pretty much playing together 24/7 when we were together. Sometimes he used to play My Little Ponies with me. He wanted to be a hair stylist back then. This was back before "Bronies" were a thing, so I guess you could say BT was ahead of his times! You have to remember that I really didn't have many friends at all... pretty much none... and BT was nice to me, even though he did tease me and stuff.

Anyways after I was 12 I all of the sudden never saw BT or my Auntie Em again. I don't know why, but it may have had something to do with the fact that, this same year, my dad got arrested for drunk driving and was out of work for a long time. Although maybe I'm wrong... maybe BT did come that year too. I remember my mom had gotten a full time job that year, and my brother and I spent the long summer days roaming our neighborhood alone, and I seem to remember BT being there with us for that. So maybe that was the last time I saw him. But after that, not again until I was 23, and that was just for a few hours while my parents and brother and I were on a road trip out that way. And after that, not until two summers ago, when Auntie Em, Uncle J, BT, and my parents and I went up to Wisconsin together for old time's sake. But both of those times I was a little overwhelmed by being squashed by my mom's personality, while also being afraid to say much in case BT thought I was dumb. He probably knew I was a little odd as a kid, but I was afraid he'd be expecting me to be more like a normal grown-up, and that he'd be disappointed when he realized I wasn't. You know that look people get on their faces when they're talking to you for the first time and they start to think, "Huh?" PLUS, I am really accustomed to being told to shut up, by Bro, when he is around, so I was sort of expecting the same from BT. Although he never did tell me to shut up, I was just always expecting him to be annoyed by me the way Bro always is.

SO ANYWAYS AGAIN... the whole point of that paragraph was to say, I had fun getting to hang out with BT, without all this pressure to try to act "right." 

Then I came back here. And it kind of makes me wonder why I freaked out about moving to E-Town last month. But maybe I would have freaked out even worse if I had actually gone then. But now I think I could handle it. I just gotta find a job. And that is the hardest part. 

I took a lot more photos but I haven't had time to upload and edit them all. So for now, here is one more cool one! 

Monday, October 6, 2014

Greetings From Sunny Portland!

My uncle and Roo and I on one of our hikes!
Hi everyone! I can't remember if I even mentioned that I was going to Oregon to visit my Auntie Em and Uncle J! I may have mentioned that I was thinking of it. Well, now I am here. I got here on Saturday at noon, so this is pretty much my second-and-a-half day here. 

Part of the objective of this visit is to help me work towards the hopefully eventual transition to living out here. It has been going pretty good so far. It was a little hard saying goodbye to my parents even temporarily, and especially to my dogs... but my aunt and uncle have a dog (Roo) and a cat (Romp) that I love, so they have helped me keep my mind off of missing Trixie and Lily. Roo loves me especially much. If I go into the bathroom, and then come out, she runs up to me with a smile on her face and greets me like we've been separated for months again! Romp spends most of his time outside, romping. But when he does come inside, he sometimes comes up to me and rubs against me, lets me pet him, and even sits on my lap. From a cat, that is a real compliment. He is like, "You may now have exactly three minutes of interaction with the royal kitty."

My uncle usually takes Roo for a walk in the woods once a day, so I've gotten to go on two good hikes already. The exercise and fresh air is good for me because it stretches out all of my muscles and really seems to ease my anxiety issues. I don't particularly like to exercise at home because, well, it is boring. Hiking is fun and interesting and purposeful. Walking around the block or working out on an elliptical is fun when it is novel, but gets old if you try to do it every day. At least, for me. And there aren't many places to hike around where I live, at least not that I feel comfortable going to by myself. Its like, trees trees trees nature nature nature PEOPLE SMOKING CRACK trees trees trees cute fuzzy squirrel nature nature nature MUGGER trees trees trees creek birds trees nature DEAD BODY trees trees trees. 

When I haven't been hiking, I've mostly been relaxing, or helping my aunt (she is recovering from surgeries related to breast cancer) or playing with Roo. 

My aunt let me read a bunch of old letters from my Grandpa, who died when I was 10. He used to write to each of his kids once a week, and Auntie Em saved all of her letters from him. It was awesome to read all the letters. It was a little like reading someone's diary, where they talk about certain things and you are missing most of the background information so you have to keep trying to put it together like a mental puzzle. The letters started the year before I was born, and kept on going until about a week before his untimely death. (He was 78 when he died, but could have lived a lot longer. He somehow tripped and fell one day while carrying a bucket or something, hitting his head on a fence, and it caused a blood clot in his head.) I got to read all of his thoughts on things going on in our family, the advice and words of wisdom he gave to my aunt, and even the things he mentioned about me on occasion! 

The sad part was that he was always mentioning trying to get my whole family together. See, my Grandpa was from southern Illinois originally but grew up in Chicago and raised his family in Chicago. But as soon as my aunt grew up she moved out here, and shortly thereafter my grandparents divorced and my Grandpa moved to Florida and got remarried. So a lot of the letters were about him trying to keep tabs on all of his family members who were divided up into two different states, and trying to figure out ways to see all of them once in a while, trying to help them out while he could, while also having a second wife who discouraged him from being as involved as he would have liked to be. Everyone seemed to be going through all sorts of hard times and even crises, with my dad and his brother and sister all being unemployed at different times, my aunt going through divorce, my brother having cancer, etc, and all he could really do was write letters and occasionally call. He wanted to move back closer to Chicago, he wanted to be able to travel to see everyone more. He had a lot of sadness about not getting to be a regular grandpa and spend time with his grandchildren. (Of course, if this had been happening now, he would have been able to friend us on Facebook, text us, Instagram us, follow our Twitter feeds, and Skype with us! And maybe I would have even let him read this blog.) 

That is part of the reason why I've had so much anxiety about moving to Oregon even though I want to. I grew up not really getting to have relationships with my dad's family members. There was more emphasis on our being a part of my mom's family, and those were the grandparents, aunts and uncles that we saw regularly. And that was cool, but if I had gotten to learn more about my dad's side of the family and to have a relationship with them, I probably wouldn't have grown up feeling so alienated. 

Get it? ALIENated? See what I did there?

So what I'm saying is, I don't want to spend the rest of my life only seeing my parents and my other Chicago family members only once a year or less. This is already what my brother does. I feel so sad for my parents because, like my Grandpa, they only get to see Squeak once or twice a year. They have to miss out on a lot of his childhood. When Bro and Sunny and Squeak came for Christmas last year, and my mom borrowed a car seat for him, she said, "Oh, I really wanted to be the kind of Grandma who has to own a car seat because her grandchild is with her so much." And she won't ever have that. And sometimes I hate my brother for taking that away from her. 

If I have kids (which I hope I will) I want them to be able to see my parents and other family members all the time. But I also would love to raise them knowing Auntie Em and Uncle J and my cousin BT and Bro and Sunny and Squeak. I feel like I just want to be close to everyone I love, but I'm always having to choose. 

On a side note, I've been doing a lot of genealogy research on my dad's side of the family, I found this site where you can start your family tree, and eventually you can connect it to other people who have made their own family trees, and when you connect to a few people you start to see that everyone in the USA is pretty much related to each other one way or another. This is a fun thing to do. But it has also been cool to trace some of my ancestors all the way back to the Mayflower and beyond. 

I would like to figure out a way to do some kind of project where I could trace my family forward... to the most recent two or three generations... and see how many of them have autism or ADHD. Wouldn't that be interesting to know? And to find out which branches of the family have the highest tendencies for ADHD and autism? You could even add in depression, anxiety, and what not. For instance, I know for a fact that one of my grandmother's brothers had special needs, which may or may not have been autism-related. 

My mom's side of the family has been harder to research. It seems that they just appeared here from Italy one day, leaving little or no evidence of having ever existed before.

So anyways... yeah. That's what's been up as of late!
And now I am going to end this blog entry. My eyes are starting to cross.