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Neurodiversity Awareness/Appreciation

Neurodiversity Awareness/Appreciation

Monday, November 19, 2018

Some New Autism Theories

The other night I had a dream that someone told me there was a reason for autism. They said that autism existed to test other people and see how they'd treat people who were different. It was sort of like a litmus test, and you could tell everything about a NT person just by watching them interact with an autistic person. It was an interesting dream, but when I woke up I wasn't sure I even wanted to mention it on my blog. I know there are a lot of people who get sort of irritated by anything that hints of, "People with special needs are here to teach us all a lesson!" I guess my subconscious brain is very corny.

Later on, when I was thinking about that, I came up with a different theory of autism. Many, many autistic people think of themselves as aliens or report feeling like aliens on this planet. When I first started this blog, I thought the whole "I must be an alien" thing was original, but it turns out that it was almost universal among autistic adults. So, what if there is something to that?

I remember reading, years ago, about how scientists figured out there were originally two different species of early humans, the neanderthals and the cro-magnons, and you could take a DNA test to find out if you were part neanderthal. That's sort of what gave me the idea. What if there were aliens on earth long, long, long ago? They could have physically resembled the neanderthals and cro-magnons, but their brains were different. Some of them mated with the neanderthals and the cro-magnons, and that is how our alien race got mixed with the human race.

I know it sounds crazy, but is it really that much crazier than the other autism theories you've heard?

(By the way, after I almost finished writing this blog entry, I Googled "autism alien DNA," and it turns out there is a group of people who believes that autism is caused by aliens abducting people and altering their DNA. So, there's that.)
































\;[=..'\

Saturday, November 17, 2018

Milestones Never Met

My mom texted my brother and I in a group text today, telling us that one of our cousins is pregnant. And a little part of me died again.
Not that there's anything wrong with my cousin. I'm sure she'll be a great mother. She's always loved babies. I don't really know her that well these days, though. She's 9 years younger than me, and although I babysat her a few times when she was little, our parents weren't close, so we never had as tight of a relationship as I do with some of my other cousins. But I'm still happy for her... because, you know, babies.
But there is that little part of me dying too. And I will try to explain it to you, but it will be hard for me to not sound like a selfish bee-yatch. Yet I always do try.
On my mom's side of the family, I am the oldest cousin. There was me, then two years after that came Bro. Then 7 years after that came my cousin who is pregnant now, followed closely by her brother. For a long time there was only us four cousins, with a huge gap in the middle of us. I was in my twenties by the time my four youngest cousins, Ponygirl, Sox Boy, the Professor, and Shirley Temple, were born.
For the purpose of this blog post, I'm mostly talking about me, my brother, and my two somewhat younger cousins, the ones I grew up with, not the four very little ones. Growing up, I was the oldest cousin. But the others, my brother and the two cousins, always passed me up and outshone me. It was one thing to constantly be in my younger brother's shadow. But when your younger cousins who you babysat begin to pass you up, it is hard.
I was, as a teenager and in my twenties, the blacksheep cousin. I was not yet diagnosed with autism. I was simply the troubled, mentally ill cousin who ran away from home and lived on the streets. My brother and cousins, meanwhile, were popular in school, got great grades, and excelled at sports and at everything they tried.
My one cousin, who is pregnant now, went away to college the same year that I tried to. I, of course, was a grown adult who had already been working part time for years while putting myself through community college. My cousin successfully transitioned to college, lived in a sorority, and did all the things college kids are "supposed" to do. I, on the other hand, had a terrible meltdown on my second day there, went through severe depression, and had to postpone my college career while I moved back in with my parents and cried on the basement couch for several months. During that hopeful week when my parents had driven me to college, where I was going to live in adult housing because I felt way too old to live in a dorm, my mom proudly told me, "You're going to be the first person on my side of the family to get a Bachelor degree."
But I wasn't. After having to leave that college in a state of disappointed disgrace, I did get back into college, but it was a rocky situation. At one college I attended in the teacher prep program, the professor, when finding out that I had autism and ADHD (because by that point i was diagnosed) told me I should rethink being a teacher, because teachers had to be very organized and independent. I had to start over from scratch at another college. I took a few years time out to help raise my best friend's children. By the time I managed to graduate with my Bachelor's degree, both of my younger cousins had already gotten theirs, and were on their way to Master's degrees.
And then there is the whole baby thing.
I've always wanted to be a mama. I've blogged about that before. Somehow I also always assumed I'd foster or adopt children, rather than giving birth. When I was 18, I wrote to social service agencies asking what the minimum age was to adopt children. (It was 21.) I imagined that, by the time I was 21, I'd have my own house and be a foster parent.
Decades went by.
Okay not decades. But years. In those years, my brother had Squeak. My whole extended family lost their shit with excitement. My grandmother said, "It's about time I had a great grandchild! All of my friends have great grandchildren already." They all talked about how proud they were of Bro, what an amazing father he was, etc.
They still do. And I'm proud of Bro too... and I love little Squeak... but the ghosts of the children I dreamed of having stand silently next to me, possibly never to become real.
Sometimes I don't even know if I still want kids. I mean, I always did. I've helped raise other people's kids. I've done all of the day to day things like staying up all night with a screaming baby or a puking preschooler, changing diarrhea diapers that leak all the way up their back and soak through their onesies, giving baths, putting to bed, making meals, going grocery shopping with wild banshees jumping in and out of the cart, dealing with funny looks from judgmental playgroup mommies... I did all that! And I loved it! All I wanted was to someday get to do it for my own children, who wouldn't be whisked away every time their real parents got a little bit sober and started to miss them.
I still do want all that. The only hard thing is that I have lived on my own for a long time now... with my animals. I have weird worries, like what if my children pull Lily's fur, or what if GOD FORBID, THEY ARE ALLERGIC TO ANIMALS???????!?!?!?!?!??!?!?!?!?!??!?!?!
Plus there is the fact that I know I'm emotionally young for my age. I still have meltdowns when I don't get enough sleep or when people refuse to tell me whats for dinner. I still need a lot of support from my mom. Ironically, I think I functioned at my best, at my most maturest, when I was raising children who needed me to be the adult. But what if I can't do it forever? Or what if I try to adopt children and I can't get approved because I'm just too autistic?
Basically, all this came into my brain when my mom told me that my cousin is pregnant. Its just another milestone that everyone else is meeting, that I may never get to. Next thing I know, Ponygirl will be be pregnant, and I'll still be the weird, spinster aunt whose dog calls her Mama.
(By the way, I will NEVER NEVER NEVER be a parent who stops thinking of my animals as my babies once they have human children. Never. Lily and Yoshi are my babies forever. But I'd still like some human babies too...)
Does that make any sense at all?


Thursday, November 15, 2018

When Special Ed Students Are Punished In School (My Thoughts)

Some schools call their isolation rooms "Focus Rooms,"
like the one where this 9-year-old from Texas was sent.
This blog entry is going to be a little different from most of the ones I write. Usually I write about my experiences as an autistic person. But I was also a special education teacher, and worked in special education classroom for about 10 years. So when I saw these two articles recently, I wanted to write about my point of view... both as an autistic adult, and as someone who has worked in schools.

The articles are both about how children with special needs... particularly autism...  get punished or get put in time out at school. Both articles are mostly from the points of view of the children and their parents, speaking out about how the children are treated at school.

In one article, an adorable, freckle-faced little autistic boy told reporters that when he was put in an isolation room... a small room with a mat on the floor, an exercise ball, and pillows... he felt like the teachers didn't want him around, and he worried that they'd forget him in there. In another article, a 14-year-old autistic boy who missed over 100 days of middle school because he was suspended or sent home, said that he felt like "the worst kid that ever was."

Reading those articles gives me mixed feelings.

First of all, I sort of felt empathy for the teachers and the school. There have been plenty of times when I've been the teacher having to escort a screaming child to the isolation room, or having to beg the special ed director to send this child home. Those were circumstances in which the children were making everyone around them unsafe. They were circumstances in which my other students had to spend hours just sitting on the floor in the hallways reading books or drawing because all available staff had to be in the classroom dealing with the kid who is kicking holes in the walls. Part of my frustration with teaching special ed in public school was that I was expected to make behavior management a priority over everything else. If I had a class of ten kids, and one of them had severe behavioral issues, I was expected to spend 99% of my time an energy on that one child... to the point where, several times, I was quarantined in a separate room with a child or children for weeks or months while the rest of my students were taught by paras or substitutes.

If you've read this paragraph, you might think the simple solution is, then yes, do put them in isolation. Do send them home. If they can't function in a classroom in a safe way, then they need to be somewhere else.

But the truth goes a little deeper than that.

In every school where I've worked, the children with the most behavioral issues are also the children I've grown the most attached to. They were smart, creative, funny, sensitive, and often a lot of fun to spend time with. They wanted to do well in school... but they were constantly on edge. Imagine a day when you were at your most irritable... a day when you woke up on the wrong side of the bed, it felt like everything was going wrong, your emotions were running strong, and everyone was getting on your nerves. Now imagine that you are 8 years old and that is your life every single day. Life for them can feel like they're surrounded by people running their fingernails down chalkboards.

I also know that most of the kids I've known, most of the time, didn't just suddenly blow up over nothing. It always started small. A kid would put his head down and refuse to do his math. The teacher would insist that he sit up and do his math. The kid would mutely refuse. The teacher would start revoking privileges such as recess. The kid would argue. Things would escalate. Next thing I'd know, I'd be sending my students out into the hallway while the principal dragged the kid into my room.

In the schools where I worked, there was a lot of pressure to "not let them win." We, as adults, had to "win" by making the children comply. If you told a child to pick up his pencil, you'd better be ready to do whatever it takes, remove any privileges you needed to, or send your other students out of the room, to get this kid to pick up the pencil. And at the end... after the other students are sent out, the kid has destroyed the room, the parents have been called, etc... you're still supposed to say, "Now, you need to pick up this pencil."

I feel empathy for the kids. When you are a small autistic child in the middle of an epic meltdown, being pushed into a tiny room and having the door locked behind you must feel scary. And on one hand, yes, everyone's life would be easier if they would just do what they're asked to do and pick up the pencil. But sometimes they cannot. Sometimes their brains and bodies just won't let them.

When I started writing this blog entry, my intention was actually to defend the teachers and school staff. Because really, when a kid is screaming and throwing things, you do not have a lot of choices. You have to separate them from the other students, either by removing the kid who is throwing things, or by removing all of the other students. In the last two schools I've worked at, because of the problems created by isolation rooms being misused, the protocol was to remove the other students. So you end up with the other students losing hours of their activities and lessons. Sometimes, as a teacher, you're given some ideas that you're supposed to try, or a behavior plan. Often those behavior plans take up just as much time and energy as the behavior itself, and the behavior rarely improves. If a child really does not have control over his mind and his actions, he is not going to suddenly be able to control himself because you give him the chance to earn a sticker.

To me, a lot of the problem is because schools are set up similar to businesses, where the idea is to spend the least amount of money possible in order to get the desired results. What is the maximum number of students we can put in each classroom where the teacher is still able to get some teaching done? What is the fewest number of paraprofessionals we can put in the special education room? How can we make this one single school social worker stretch out enough to serve all of these students who desperately need help? What is the shortest amount of recess we can get away with giving kids, in order to get the most academic instruction in, so that we can raise our test results? It is about numbers, it is about dollars, and we could make it all work so beautifully if it weren't for these darn square children who don't fit into our round holes. And when some children fall apart, we blame everything on them.

I guess this could be another blog entry supporting my Someday School plan. But although my little school will possibly be able to help a handful of children, there are hundreds of others... at least one in every single classroom across the United States... who will still be lost in the system.



References
Thousands of Washington students isolated and restrained, despite law limiting practice (11/9/18)

Washington special needs students disciplined more than twice as often as general education peers (10/25/18)

Wednesday, November 14, 2018

Smoke Detectors

Here is the transcript of a true conversation that took place the other day.

Me: "My apartment manager is coming to my apartment tomorrow to do a building inspection."

Auntie M: "Oh, that's interesting."

Me: "I wonder if they'll ask me why I knocked all of the smoke detectors down."

Auntie M: "Hmm... Why did you knock all of the smoke detectors down?"

Me: "Because they were hurting my ears when they went off."

Auntie M: "Yes..."

Me: "They go off in the middle of the night sometimes. For no reason. And there is no smoke. I can never get them to turn off. Even after I knocked them down, they wouldn't turn off."

Auntie M: "Uh..."

Uncle J: "You know they are meant to be loud, right? They're supposed to wake you up when there is smoke."

Me: "They do wake me up. But there is no smoke. And they hurt my ears terribly. Remember that time at the rental house?" (Referencing a time when we were at a rental house at the coast and my cousins were cooking and the smoke detector kept going off, over and over again, resulting in me getting nauseous, having a minor meltdown, and having to sleep for two hours.)

Uncle J: "Maybe it is carbon monoxide."

Me: "If it was carbon monoxide I'd be dead by now."

Uncle J: "Could you hook them up just for the day when the building manager is there?"

Me: "Maybe. I think I threw one of them away."

Auntie M: "Why did you throw it away?"

Me: "Well, it wouldn't stop going off, so I put it in the freezer."

Auntie M: "Uh... why?"

Me: "So I wouldn't be able to hear it anymore."

Auntie M: "So, then, why did you throw it away?"

Me: "It was frozen. I figured it wouldn't work anymore."

Auntie M: "Okay. Where is the other one?"

Me: "Buried underneath all of my towels in the linen closet."

Auntie M: "Good place for it."

Me: "I can't hear it in there."

Auntie M: "Maybe you could have Googled how to turn them off."

Me: "I couldn't Google, because my fingers were in my ears, like this!"


(Important note: The smoke detectors go off one at a time, not all at once... on separate nights, usually 2 am. Also there are three of them, very close to each other. I still have one left, so if there is any actual smoke, it will detect it. More likely, it will detect nothing and go off anyways.) 

Sunday, November 11, 2018

I Need A Schedule, Dag Nabbit!

A few weeks ago, my mom and I went to California to visit Bro and Squeak.
One somewhat annoying thing about traveling with members of my family, or basically spending time doing anything with them, is that they like to be spontaneous. They hate being tied down to plans. I, on the other hand, love to know what we're doing. I shouldn't say I love it. I would love to be more spontaneous and fly through life by the seat of my trousers. But I need to know what is coming up next. I need some idea. I have to be able to visualize it in my head.

This may be part of why I always loved working in classrooms so much. In public school classrooms, we always have a schedule. We may not stick to it one hundred percent, which is fine... I understand changes happen... but we at least have a rough outline of what we are going to do each day.

But my family hates to answer questions like, "What are we doing tomorrow?"

Or, "What are we doing after this?"

Or, "What are we going to do for dinner?"

Or, "Are we having dinner today?" (Oh goodness, are meal times a sore subject for me. I need them. I need breakfast if I am awake for it, and lunch, and dinner, and maybe some snacks. I need to know they are available. My family, on the other hand, are not as tied to meals as I am. If my mom munches on some cheese and crackers at four o'clock, the whole family just may not have dinner that day. Of course when I was a kid she always gave us dinner... I'm not saying she's negligent or something... but I mean, if we're traveling together or something, or I'm on vacation with my family, I cannot depend on the idea that we will get lunch and dinner in the same day. And I need that so badly. But again, I digress...)

They also like to cancel whatever plans we do have. For example, my mom and I had planned on going to Odd Man Inn (my very favorite farm sanctuary and all around favorite place on Earth) the day before we left for California, but then she decided we'd leave a day early to go see Bro and Squeak instead. WHICH, by the way, I handled very calmly and understandingly. I told my mom I was sad that we were not going to go to the farm because I really wanted her to see it, but that I understood that she would rather see Squeak than see my beloved farm animals. I didn't even say it sarcastically, the way I am sort of saying it now. I said it very understandingly.

SOOOOOOOOOO, while we were visiting Bro and Squeak, I kept on asking my mom, "What are we going to do today?" or "Are we going to do anything today?" On both Thursday and Friday, the answer was ambiguous. My mom and brother were happy to just lounge around the house. My mom helped my brother do yard work, and we just lingered around. The first day was somewhat okay, because Squeak was at school, and I took a long nap in the morning to try to catch up with the sleep I had missed that week. When Squeak got home we played games with him for fifty hours (by the way, Squeak totally cheats at every game) and then had dinner, and then Squeak had his bath and bed time.

On Friday Squeak had no school, so on Thursday evening I tried to find out from my mom and brother what we would do the next day. I thought we might do something fun with Squeak. Before the trip, my mom and I had talked about things we might get to do with him, like go to the coast or visit a pumpkin patch. So I was like, "What will we do tomorrow?" And they were like, "Uh... nothing."

The next day was somewhat torturous for me. There was no schedule. There were no activities. There were fifty million more games of Candy Land, because somehow that is the only board game my brother has in his house. (Remind me to get Squeak some new games for Christmas!)  There was watching Squeak and Bro play catch for a few hours. There was some hacky-sacking instruction by Bro, in which Squeak and I tried to bounce the hacky-sacks off our knees for a few hours. When I describe it now, it sounds so luxurious... a long, lazy, sunshiny autumn day hanging out with my family with no particular agenda. Yet my anxiety was rising. I needed something to do!

I caught somewhat of a break that evening after dinner (yay, dinner!) when Bro organized a spontaneous art project. We worked on making Halloween decorations out of construction paper and glue. I made a great haunted house, with door and window flaps that could be opened to reveal spooky characters peeking out. Squeak let me use some of his Halloween stickers and I also cut some of the characters out of construction paper. That hour of construction paper art was probably my calmest hour of the day, because I had a project. If someone had somehow told me, "Today after dinner we will make Halloween decorations," that probably would have carried me through the whole day! Of course, nobody knew ahead of time... so you see... why... I... was... going... crazy...

After Squeak went to bed that night I asked my mom and Bro what we were doing the next day, and they were all, "Meh... nothing," and I just about jumped through the plate glass window. I stayed reasonably calm though, but kept saying, "Can we just do something? Could we do something?" And they got annoyed with me and my brother said I was putting too much pressure on him to entertain us, when I should have just been happy with the privilege of basking in his presence.

That night when I went to bed, I did have a meltdown. I had a very silent meltdown, because I was sleeping in the top bunk of Squeak's bunk bed and didn't want to wake him. I bawled silent tears for quite a while, and then I made a frantic post to my Facebook friends. Finally I was able to fall asleep. When I woke up the next morning, feeling hungover as I always do after a major meltdown, my Facebook feed was full of understanding friends sending their love and encouragement. That helped a lot. It really did.

That day, my mom and I were watching Squeak while my brother did some work building a baseball field at the local park. With my mom in charge instead of Bro, we actually had a really amazing day. We did play some games with Squeak, which ended with him trying to cheat and us busting his balls and making him play by the rules and him hiding behind the couch. But then we went to the park, where we spent several hours playing with the hacky sack and football. And I met a dog, which helped a lot in calming me down. My brother brought us Subway and we had a picnic in the park. Then my mom and Squeak and I went down by the river and hunted for rocks, which was my favorite time ever. We decided that part of the river, which has all of these huge, flat rocks and shiny rocks, was going to be our secret family place. After that, we went out for ice cream. Then we went to a Dia De Los Muertos celebration at Squeak's school. Then, we went out for pizza. Finally, at home, we had a group effort pumpkin painting project with some black light paint my brother had.

It is worth noting that all of these events were unscheduled, except sort of for the Dia De Los Muertos thing, which I actually knew about several days earlier from looking at Squeak's school calendar thing on the wall, but which my brother kept saying we couldn't go to because it was going to be really somber and he just wanted to bring Squeak by himself, but which turned out to be totally not somber and involved costumes and a salsa tasting contest and Squeak running around playing with all of his friends, but yes, I digress again. Anyways, it was a totally unscheduled day, and I still managed to have fun. But my anxiety would have been so much lower, if I had had even the skeleton of a schedule. If I could have known for sure that we would go to the Dia De Los Muertos celebration that evening, for example, knowing that one thing for sure could have been a strong pillar that helped me through the rest of the day.

My family just doesn't understand it. They say they do, but then they refuse to give me any sort of schedule. They literally say, "Yes, we know you need one, but we're not going to have one."

I don't even know how to end this because it is a problem with no solution. And now my dog is barking at me because she wants me to put her on my bed and she wants me to get into bed also because my dog is very concerned about the late hours I've been keeping. So, I guess, this is goodnight!

Friday, November 9, 2018

Working At Home Is Rather Cool

Hi everyone! I thought I'd stop by and update you on what I've been doing. The short answer is, nothing really. After being unable to find another teaching job for this school year, and having my spirit and heart broken by the last two years teaching special ed in public schools, I've ended up taking a break. I'm taking this time to work on starting up Someday School, and I'm also doing some work at home jobs.

My first work at home job is writing articles for Steady Content. Basically they have a list of articles that need to be written. They're usually on topics like product reviews, or the top ten of something. They give you an outline of the article, including the products you are supposed to review if that is what the article will be about. My job is then to just fill in the outline in the form of an article. I read about all of the products being reviewed, fill in the information, and give them star ratings in different categories. If it is a Top 10 article, at the end I get to write up my verdict, choosing which product I like best. I usually pick a few of them and explain who they'd be best for. For example, when I was reviewing RV camping resorts, I highlighted the one I thought would be best for families, the one I thought would be best for couples or single adults who just wanted some secluded time together, and the one that would be best for people on a budget who just wanted a place to park their RVs without all of the bells and whistles such as pools and game rooms. It is actually kind of fun and interesting when I get an article I like, although sometimes they can be a little boring. It takes me about 3 hours to write an article (I could probably do it more quickly but I get really into researching it and finding the information)   I also recently got accepted by the same company to be the person who prepares the articles, which means I'd get to create the outlines... but I'm still waiting to see if the first articles I prepared got approved. They make you wait for approval after you do your first five or six, and if they get approved, you can then do as many as you want. My struggle with this has been basically forcing myself to get out of bed. Ideally, I'd get up at a regular wake-up time, such as 7:00, and start work at 8:30 or 9. If I did that, and worked 8 hours, I'd be able to write about 3 articles a day. But what usually happens is that I am glued in my bed, it gets later and later, and I waste a lot of the day. Even with no where to go and nothing to get anxious or depressed about, my anxiety and depression still manages to hobble me! Lily does not help me in this regard. She would be perfectly happy to stay snuggled up to me for 24 hours a a day! She doesn't even bother me to get her breakfast or take her outside... I usually have to be the one to wake her up! Yoshi, on the other hand, will stand next to me on the bed and shake me with her paw, whispering, "Mama get up and feed me!" She will also attempt to clean her own litter box if I don't do it quickly enough. She's mastered the scooping the lumps out of the box part, but she has not been so great at transferring the lumps into the Litter Genie, so it just ends up on the floor next to the litter box. But it is still pretty impressive for a cat! And she's only two years old, so I can imagine that at this rate, in a few years she'll be able to run the dishwasher and take Lily for walks.

But I digress...                   

My second work at home job takes place in the wee hours in the morning. This one is actually a teaching job... I teach English to children in China, online. Right now I teach through a company called GoGoKids. If you are interested in teaching English, feel free to use my referral link. I'm not sure I'll keep doing it though. I don't mind the part where I have to get up at 2:30 in the morning to teach children on the other side of the world. (It is just my luck that I live in the earliest time zone in the USA. If I lived in New York, I wouldn't have to get up until 5:30!) The part I mind is that, when I have 6 students scheduled, about 80% of them will either cancel or not show up. So I basically stay awake for hours each night, doing nothing. I'm sort of interested in trying this other company called SayABC, which I also got accepted for. I'm working through the tutorial right now. I'll let you know how that goes.                                                                                                                                                                                                                                                                                                                The advantages of working at home are that I can also take time off to do other things. For example, I've joined a singing group that meets once a week to sing, and I've also started an activities group for autistic people. It's called Autistic Community Adventures. It has 25 members so far, and next week we go on our first adventure, to the arboretum. I can also take time off for days at a time... for instance, last month I took a week off to go with my mom to visit Bro and Squeak. If I am going to be gone for longer, I can do my writing job from anywhere with Internet. The teaching online job would be harder to do from other places, because I wouldn't have my background and props (I've turned one wall of my kitchen into a classroom) and because I'd keep other people awake in the middle of the night.      

The disadvantages of working at home are that, first of all, it isn't my dream job of teaching special education. Also, I can go days at a time without ever leaving my apartment for any reason other than to walk Lily in the park across the street. As soon as I get Yoshi to do that job for me, I will have no reason to go outside at all. I don't necessarily see that as a disadvantage, because I am pretty happy to stay home... but it probably isn't that good for me to just live in a cocoon.

Anyways... I just wanted to update you on what I'm doing these days. I'm going to try to start blogging more often also. I know I say that all the time... but now that I work at home, I'm really going to make it happen!
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                 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Saturday, October 20, 2018

My Trip To The Autistics Present Symposium

Yesterday my adorable traveling companion and I made the 3 1/2 hour drive up to Bellevue to go to the Autistics Present Symposium. My traveling companion is 9 years old. I just realized I could say that. She's not the child of my first marriage, though... I've always been a "single mama!"


Anyway... We drove up here yesterday to attend the Autistics Present Symposium. You may remember that I went to the Autism Society Conference in Wisconsin last summer. This year I couldn't afford to go to that, but then someone posted on Facebook about this one, and since it was right here in Washington it was more doable.

The main difference between the Autistics Present Symposium and the Autism Society Conference is that this one is created by, and mostly for, autistic adults. The Autism Society conferences are geared mostly towards parents of autistic children, and people who work with autistic children, and people who have or work with autistic teenagers who are reaching "transition age," and then they may have one or two things geared towards autistic adults. When I was there, most of the autistic adults I saw were actually there because they were doing presentations, which were meant to help the neurotypical parents and professionals to better understand autism. At the time, I was excited about being in a place where I didn't stand out, and could be myself. Yet I was still sort of an outsider, because everything there was designed for parents and professionals, plus some extra things geared towards the young children who were with them.

At this one, there were a few parents and professionals floating around, but for the most part every single person was an autistic adult.

It was very small and organized, and the time span was pretty short. I got there and was signed in at 9:45, and the whole thing ended by 4. In one way this was cool because it made it more manageable... but also, it was just more compact and there wasn't as much time to explore or make friends. I really wish it somehow could have been the whole weekend and included some activities or something, the way the Autism Conference does, but this time with everything geared towards autistic adults. As it was, it felt just like a blink, like a very quick glimpse of  a world that I belong in.

At the Autism Conference, the autistic adults who do tend to be there are brought by their parents, and they tend to be much closer to "transitional age"... 18 to 21... than to my age. At the Symposium, there were people of all ages there, but there were many who were my age or older, and who were living independently. Some might live with a parent or spouse, but they were independent as far as having their own activities and identities. They were just, all, autistic people. Just autistic adults all gathered at the same place. I really don't know how to explain it.

If I were to use a metaphor, which I always enjoy, I might say, imagine you are a purple-skinned alien who was adopted at birth and brought to a planet where everyone has green skin. You've had the chance to meet some other purple skinned people before... perhaps once at an event that was mostly for green families who had adopted purple-skinned children... but this is one of the few times that you've ever been in a building where almost everyone had purple skin. Imagine you've spent most of your life very aware of your purple skin. You grew up being yelled at and scolded and told to just be more greener. You've spent a lot of your adult life trying to blend in among the green people. You wore long sleeved shirts and floppy hats to try to hide your purple skin, but it always peeked through. As you grew older and became more comfortable and happy with your purple skin, you still felt self-conscious of it whenever you went out. When you went to that conference for families of purple-skinned people that one year, and you saw the others with the purple skin, you still sensed the green-skinned people looking around trying to figure out which green-skinned family member is escorting you, because really, this world is meant for the green-skinned. And then you go to this conference, and everywhere you look is purple skin. Ironically, for the first time in your life, among your own people, you feel more invisible than ever... because you could run naked through the halls with every inch of purple skin showing, and nobody would bat an eye, because they are all purple too. It is almost overwhelming. This is your tribe, your culture... but you will only be with them for six hours, and there is a tight schedule. During this tight schedule you attend classes and learn a lot, but then you have to leave and go back to your very green world. You are left with this feeling like you want to connect with ALL THE PURPLE PEOPLE IN THE WORLD! There were so many of them a minute ago! But now they've dispersed back to their own green families, and when you go back to the hotel where you're staying, the green employees smile suspiciously at you.

Whoa, I told you I liked metaphors!

Okay, for the purple people out there who weren't able to go, I'll give you some more details of what I learned.

First we had a keynote speaker, which was Autistic Hoya. She's a pretty famous blogger. Slightly more famous than me. Hahaha! She was talking mostly about the fact that there are a lot of autistic people in the transgender community, and vice versa... but that sometimes autistic transgender people have been unwelcome at groups and activities meant for transgender people, because the transgender people didn't want being transgender to be seen as a disability, and didn't really want it being associated with autism. And also, that sometimes people with disabilities who were also transgender or gay are treated unfairly by people who make decisions for them. For example, an adult with Down syndrome who was transgender and started identifying as female after they turned 21, and then family members filed guardianship papers over the person because they said that it was proof that the person needed to be protected. And some people with disabilities who live in group homes, being not allowed to go to LGBTQ events, because their guardians told the people who run the group homes not to allow them to go.

The first class I went to was on disclosing about being autistic. The ladies leading the class suggested that it is a good idea to disclose about being autistic, because when you do, you are also advocating for other autistic people, and you're showing that you don't have the need to hide yourself. Some people talked about the same problem I've had firsthand, where you tell your employer you're autistic, and they're like, "Oh that's nice," and act all accepting, but once they realize that being autistic actually means something, the employers get like, "Ooooh, actually can you be a little LESS autistic please?"

Then we had a break for lunch. I had to carry my pokey service dog all the way there, and by the time I got there the veggie sandwiches were gone, so I had to have a portobello salad. But it was very delicious. Lily ate the red peppers. I tried to give her a mushroom but she spat it out. We ate sitting on the floor in the hallway.

The next one I went to was by Neurotypical Wife, who was being interviewed by a giraffe from Giraffe Party. She has a Facebook page where she writes in a satirical way about the love and patience required to cope with her neurotypical husband. For the interview, the giraffe would say things such as, "How do you encourage your neurotypical husband to learn more neurodivergent behaviors? For instance, what do you do when he insists on making small talk?" And Neurotypical Wife would say something like, "Well, I reward him with pizzas whenever he behaves like a neurodivergent person. He's making progress." She'd say things like, "I'm an expert on neurotypical people, because I grew up with a neurotypical sister, and I also have been generous enough to marry a neurotypical person. I'm like a saint." In case you haven't figured it out, she's basically mocking "autism moms" who write about how they cope with having autistic kids. Then people in the audience would say things like, "Can you tell us a little bit more about your husband's toileting habits?" And she'd say, "I do post a lot on Facebook about his toileting, with pictures and everything."

Finally, the closing keynote speaker, who was Kassiane Asasumasu, talked about the history of the autism community... meaning the community of autistic people, more than the community of parents and family members of autistic children. She talked about how basically the autistic community was created online on message boards, how it has grown and changed over the years, and how some things have stayed the same or have repeated themselves. She also talked about the difference between "autistic" spaces and "autism" spaces. An autism space would be something like the Autism Conference, which is about autism, where the Symposium is an autistic space because it is for autistic people.

Fun fact: You've probably heard, for a long time, that it is important to use "person first" speech when talking about people with any disabilities. I heard that a lot when I was first a paraprofessional in schools. "Person first" speech means to always refer to the person as "having" the disability or being "with" the disability. For example, if I am using person first speech, I should introduce myself by saying, "I'm Angel, and I have autism." The idea behind this was to encourage people to see the person separately from their disability. However, many autistic people do not want to be separated from autism, because it is a huge part of them. They see themselves as autistic, not as "having autism." I have always felt this way too, because saying I "have autism" makes it sound like I might put it down at some point and not have it any more, or I might take an antibiotic and get over it. But I've always felt a little nervous about saying "autistic," even about my own self, because the whole entire world would collectively say, "YOU MEAN YOU HAVE AUTISM!" Deaf people are similar... most deaf people prefer to be called "Deaf," rather than "having deafness". ("Having deafness" doesn't even sound right, does it?)

Then it was over.

If I were to sum it up I would say, again, it was awesome to be around all of these autistic adults, and to hear from these particularly smart, accomplished, witty autistic people who were presenting. And I wish it could have been longer.

Afterwards I took Lily to a really cool park in downtown Bellevue, and we walked around so she could introduce herself to other dogs. She gets really happy when she meets other dogs, especially if they are about her size. She doesn't really play with them at all... she just wants to sniff them, and watch them, and be around them.

I wonder if Lily feels the same way, when she meets other small dogs, as I do when I meet other autistic people? She's usually around me and other humans, plus assorted cats and medium-sized dogs. When she meets a small dog, is she like, "Oh my gosh, it is just like me! It is one of my tribe!" Is she secretly hoping that someday she will find a colony of small dogs and live happily ever after without humans, big dogs, or cats? Also, should I be referring to her as a dog with smallism? Or a person with small dogism?

Great, now I'll be awake all night contemplating that!