Neurodiversity Awareness/Appreciation

Neurodiversity Awareness/Appreciation

Saturday, July 22, 2017

Advice For A Young Girl With Aspergers And Her Family and Friends

Me, age 9, in Chicago. 
Someone I met in one of my Facebook groups, upon finding out that I have autism, told me that she has a 9-year-old family member, a little girl, who has Aspergers.  She wanted to know what advice I could give to her family and what I might say to the little girl herself. I've actually been asked this question before, and I thought I would dedicate a blog post to it.

Its actually hard for me to think what I'd tell a little girl with Aspergers. See, I never even heard of Aspergers or autism until I was an adult. So, at age 9, all I knew was that I didn't quite fit in at school or anywhere else.

People tend to think that kids with autism aren't interested in making friends. For me, the opposite was true. I was just about obsessed with making new friends. When I was 7, we moved to a new town. My brother and I were staying with our grandparents, and they brought us to visit our parents at the house where we'd be moving to. A group of curious neighborhood kids came wandering over. When I spotted them, I started jumping up and down, screaming, "Kids! Kids! Kids!" I grabbed my grandmother's hand and pulled her over towards the kids. In my memory now, I can see that the kids looked startled and sort of taken aback, but at the time I didn't notice the expressions on their faces. I just kept jumping and yelling and waving excitedly as my grandmother asked the kids their names and then introduced them to me. When we eventually moved in, I became part of the neighborhood kids pretty quickly and they were my playmates for many years. Later one of them told my brother that, when they'd first met me, they thought I was "retarded" and they'd been sort of scared.

Actually, I mostly played with the younger kids in the neighborhood. There were a few who were my age or older, but socially I was more at the level of  the kids who were 2 or 3 years younger than me... my younger brother's age. I didn't think of them as younger than me at all. At school, I did have friends. In kindergarten, first and second grade, it was all about playing on the playground and it seemed like everyone was friends with everyone else. You could play on the monkey bars or build a sand castle with someone without even knowing their name. But in 3rd grade, kids were starting to notice who was a little different and who was the most "popular." Girls were already starting to pay attention to clothes and hair styles. When I was invited to sleepover parties, the other girls spent less time playing, and more time gossiping and dancing to music videos. I wanted no part of it. I still just wanted to play. In my neighborhood I played Barbies and My Little Ponies and pretend games like School and House. I had a few weird "special interests" as well... I was obsessed with orphans and orphanages (I used to watch the movie version of the musical "Oliver" over and over) and "olden days" (I loved the Little House On The Prairie books.) I loved playing pretend games that were based on these two subjects. I found one friend who was somehow interested in the same things I was, and we played together constantly. In third and fourth grade I no longer really played with the other kids besides that one friend, although I was in Brownies and considered the other Brownie girls my friends. I was still invited to their birthday parties and things. But these were the grades in which the kids were starting to notice I was different. I also noticed I was different but I sort of blamed it on them. I thought the other kids were trying too hard to be cool and act like teenagers, and I was happy just being a kid. I also did some peculiar things that I had no clue were weird. For one thing, I loved to read, almost to the point of obsession. I hated math and science (although this goes against the stereotype of people with autism) and had a terrible time sitting through these subjects. So I devised a plan. In the morning I would get a book from the bookshelf, and hide it behind the toilet in our classroom bathroom. When it was time for a subject I didn't enjoy, I'd get up and go into the bathroom, where I'd sit on the toilet and read. It never occurred to me that the teacher would notice me disappearing for 20 minutes every time math rolled around. I also amused myself by pouring my Elmer's Glue on my desk, letting it dry, and then scraping it off with my scissors, because for some reason it was a great sensory feeling for me. If you've never scraped dried glue off a desk with scissors, you should try it. But it has to be a thick layer of glue, or else scraping it off the desk will feel more like nails on a chalkboard. But I digress...

Fifth grade was where things got really hard. (Don't worry, I'm not planning to tell you my entire autobiography in this blog post... I'm getting to a certain point.) The school district had built a new school, and many of the kids I'd gone to 2nd, 3rd and 4th grade with were transferred to the new school. This included my one best friend who I played Orphans and Olden Days with, as well as my Brownie friends. At the same time, a lot of kids from other schools in the district were transferred to my school. I had been put into what would now be called Gifted And Talented, which meant I was in a class for "smart" kids. Most of the kids in my 5th grade class had come from other schools. They took one look at me and pegged me as a "nerd." They made fun of me every day. It would have been one thing if they had just ignored and excluded me... that would have been painful enough. But they actively tormented me. A group of them would surround me at recess and start making fun of my clothes, my hair (it was uncontrollably frizzy and wild at the time) and anything I said or did. I had never encountered bullying before. It broke my heart. Our Brownies troop had also been discontinued, because it would have been Girl Scouts at this point and for some reason there was not enough interest to create a group. So I no longer had that built-in social experience. Keep in mind, I was undiagnosed, and had actually been identified as Gifted, so there were no social skills groups or counseling or mentoring or anything else available to me. The teachers seemed to feel sorry for me but felt that it was my fault, really, for not trying harder to fit in. My mom tried to help me by picking out clothes that she thought were fashionable and trying to do my hair, but she, too, grew frustrated with me for not trying harder. I still played with the neighborhood girls after school, but that also irritated my mom because they were younger than me and I "should" have been playing with kids my own age, taking interest in fashion and hair and music and whatever it is girls that age are supposed to find exciting. At the same time, adolescence was starting to get its icy grip around me, which meant even more heartache and pain. I got yelled at for not wearing a bra. (It was so uncomfortable, plus in my mind, in which I tended to have strict categories for things, a bra was something for an adult or teenager, not for a kid, and I still saw myself as a kid.) I got yelled at for not putting on deodorant. (That also fell into my category of teenager and grown up stuff.) My face was starting to break out in acne. My mom made me wash my face with this horrid smelling orange antibacterial soap. It was so harsh, it dried out my skin, leaving white flakes around my nose that gave the kids something else to make fun of me about. It did not get rid of the acne, though, leaving my mom to comment. "Its like you make yourself ugly on purpose!"

So you see, it is hard for me to think of what I might tell a 9-year-old girl with Aspergers, because my own experience sucked. There was one thing that helped me get through fifth and sixth grades. At my school there was a special education class. Most of the kids in the class were younger than me. I don't know if that was just a coincidence, or if they just didn't offer special education beyond fourth grade at that school. Somehow or another, a few of the little girls in the special ed class befriended me. I was always alone at recess, either just wandering around or sitting on the concrete reading a book, and one day they just walked up and started talking to me. I remember being a little nervous at first... but then realizing that they were not much different from other kids. They behaved like much younger children even though they were just a few years younger than me, but they were friendly, and playful, and funny. I became somewhat like a big sister to them. I played outside with them every day, helped them stay out of trouble, and defended them from the other kids' teasing. I loved them.

My parents hated that I had found these new friends. They tried to discourage me from playing with them. They couldn't come out and say, "You can't play with the special ed kids," but they just said things like, "Why don't you hang out with the girls in your class," and "Other kids will think you are weird" (which they already did anyways," and "If you spend time with those kids you'll become more like them." Maybe what they noticed was that I was like "those kids" in many ways, and they didn't understand it. One time I gave the girls my phone number and told them they could call me. When one of the girls called while I wasn't home, my mom took the message. She told me. "If that is one of your special ed friends, don't call her back. Don't get that started."

At school though I was encouraged to keep up being friends with the girls. The teachers thought it was nice that I'd befriended them and that I took care of them and played with them. One of my proudest moments ever came one day in the sixth grade. The school was starting a recycling program, and sixth graders were supposed to go to the other classes around the school and explain the recycling program to them. I offered to go to the special ed class where my friends were. When I walked into their classroom, my friends shouted greetings to me. Their teacher said, "It's Angel! One of our favorite people!" I was bursting with pride and I remembered it for the rest of my life.

What would I say to the family of a girl (or any kid, I suppose) with autism or Aspergers? I might say , don't put too much time and effort into trying to get them to look and act like everyone else. If you work too hard at making an autistic child "indistinguishable from their peers", you risk turning them into a shadow of themselves. I would ask adults in the child's family to focus on bringing out the child's personality and strengths. The most important thing might be to make home, and family, a haven for the child. As they grow up, in life, they will face situations where they may feel like they don't fit in or they may be nervous about doing the right thing. Home and family can be a place of true acceptance and love. Of course you still want to teach your child manners, social skills, and life skills, and don't just let them do whatever they want. But avoid shaming them for things like stimming, or not participating in the things their peers enjoy. Let them be who they are. Encourage strong relationships with other relatives and family members who are accepting of them. A positive home and family can make a huge difference.

Also, help them find their community, their "tribe." I still struggle with this as an adult. In my late teens and early twenties, trying to find a place to belong and be accepted led me into all sorts of hazardous situations. Helping your child find their place in the world might involve figuring out their interests and strengths and then running with those. If she loves to read, the local library could be an awesome resource... she could join book clubs, or be a volunteer. This would help her to form more positive relationships, with peers as well as with caring adults. This may also involve looking outside of her chronological age group. If she is happiest talking with adults, then having an adult mentor through a local organization, having a volunteer job where she can have safe and positive adults around her, or "adopting" an elderly person at the nursing home, may be very fulfilling for her. The important part is that she feels like she is part of something and she feels accepted and important. On the other hand, if she seems to really long for more friendships with kids her own age, then you might want to spend more time helping her find those friendships. There are now play groups and social groups for kids on the autism spectrum. Activities outside of school might also help. If she loves physical activity, joining a gymnastics class can help her make friendships that are based on that shared interest, putting less focus on the things that are different.

I should also point out that schools are (hopefully, at least) different now. Teachers are more aware of bullying and of ways to make their classrooms safe and accepting environments. Teachers should be focusing on teaching all of the students to be kind and respectful of one another, and to appreciate differences. One of the things I hated most in school was when the teacher said, "Find a partner," and all of the other kids hurried to be with their friends. I was left standing awkwardly alone, to be placed with whoever else was leftover or to be put into a group of three. Teachers can pre-choose partners and groups based on who might work well together, or encourage kids to meet others by having them randomly choose a shape or bracelet out of a bag and then find others with the same shape or bracelet.

To sum it all up, the most important advice I'd give to parents, teachers, and other family members, is to give the child with autism or Aspergers that place to belong. Help them find their strengths and interests. Build upon their personality instead of trying to get them to tone it down enough to blend in. A feeling that they are loved and appreciated, that they have a place where they belong, and having a positive self image, are the best things you can give any kid. These gifts can go along way in helping a kid with Aspergers as they go out into the world.

All that being said, I think I've led an awesome life so far, in many ways. My childhood was rougher than it should have been. But because I was used to having to work a little harder than other people in order to accomplish things, and because I was used to dealing with anxiety to get through so many parts of everyday life, I've become stronger than many adults I've known. When I was in high school, I still hadn't been diagnosed with autism, but I'd been put in special education and my mother had been told by the psychologists that they thought I might have "some sort of retardation." They told my mom I would never learn to drive, never get a job, never go to college, and never live independently. Well, I've done all that and more! It took me until I was 23 to get my driver's license, but now I drive everywhere. It took me until I was 25 to start college, but I got a Bachelor's degree. Last year I got my first full time teaching job, and moved into my first apartment, where I live alone. I have a service dog that helps me with some of my social anxiety issues, and I have a kitten that I found last fall under a building at work. Animals are one of my special interests, and I volunteer at an awesome rescue farm, where I get to spend time cuddling with goats and geese and pigs and sheep. I've gotten to have some cool adventures over the years, such as taking several cross-country trips by Greyhound bus or by Amtrak train (which sounds like torture to many people but it was a lot of fun for me) and spending a year in AmeriCorps working with at-risk children. Whenever I think of something I'd like to do, I do some research and find a way to do it

So, to the kid with Aspergers... I don't really know how valuable my advice is, but after some thought, here is what I would say: This is not something you need to hide, or overcome. You can learn about your Aspergers and figure out the tools that can help you to do your best. You may meet some rude people along the way, but the friends you do make will be the "diamonds in the rough," the really amazing and good-hearted people that you'll feel so lucky to know. You may have some hard times in your future, but you can also have some awesome experiences if you look for them.

Finally, you may sometimes wish you could be an ordinary kid. But what you have is an extraordinary brain, and with it you can lead an extraordinary life. That is something special.

A few resources I thought I'd share, while we're on the topic...

Emerging From Autism - Website/blog by a woman who is a writer, teacher, and a mother of a girl with Aspergers. 

Asperkids - A website for kids with Aspergers or autism and their families and teachers. They sell some very cool books geared towards kids and teenagers to help them learn about their Aspergers. They also sell a neat, sort of "welcome kit" for kids with Aspergers, called Congratulations! You're An Aspie! I've always wanted to order one, but unfortunately I'm not a kid. 

Tuesday, July 18, 2017

Here We Are In Chicago!

Me and Lily chilling in the grass. She
didn't come to Milwaukee with me because
I felt like she needed a break after our
beach trip... so when I got to Chicago she
was so excited to see me and wouldn't
let me out of her sight! 
Gosh, I suck at thinking of titles for my posts, don't I?

Well, anyways, Lily and I have been in Chicago for almost 4 days now. We've been doing a lot of resting and recovering. I have, anyway. I don't think Lily has that much to recover from. But this past school year really kicked my butt. It broke my spirit and left me, as I told a friend not long ago, feeling like a shadow of myself. Now I often find it hard to focus on anything or really care about many tasks. That is why I haven't blogged in so long... I just didn't have the heart for it. Since I'm blogging now, I guess I'm starting to recover!

Lily is barking out the window and now I've forgotten what I was supposed to be writing about.

Oh yeah... so the autism conference left me with a new sense of ownership for my autism. I don't know if that is a good word for it. If Lily would stop barking I could probably think of a better word. When I was first moving to the Portland area, I was originally moving to Eugene, and I had found this organization called KindTree. They have this camp in the summer called Friends And Family camp that is for people with autism and their friends and family. I remember when I emailed them about it years ago, they said it was for everyone, including adults, wherever you are on the "spectrum" of autism. I really wanted to go to it, but because of my summer jobs or for whatever reason, I ended up not going. Now I think I want to go this year. It wouldn't be too hard to drive down there for the weekend. I think you share a cabin or something with other people... I'm not sure... but that would be okay. They have all sorts of cool camp activities. Should I go? Vote Y or N. Its at the end of August.

I will probably end this post for now because my dad got home and we are going to work on a Sudoku. My dad always does the newspaper Sudokus but he doesn't exactly grasp the concept of how to do them. He just sort of guesses at the numbers. I keep trying to explain to him that you can't just guess at them all, you need to have proof before you put in a number. I can do the 1 star ones in the newspaper pretty quickly but I have failed at the 2, 3 and 4 star ones. My dad, randomly guessing, gets almost to the end but realizes he has at least one mistake in every row. Today we're going to make a copy of the newspaper one and then we'll both do it separately and see who wins.

Yeah, I know, Chicago is WILD, man!

Friday, July 14, 2017

My Thoughts After the Second Day Of The Autism Conference

One of the freebies I got from the exhibit hall was this poop
pillow! Coolest thing I ever owned! It was from Lovebug
Probiotics. They also gave me two bottles of probiotic pills.
(The lady gave me an extra bottle when I told her I have IBS!)
Today was the second day of the autism conference. It was a nice day. In the interest of being true to myself, I decided to go mostly to sessions about being autistic rather than sessions geared towards teachers. I am going to 1 or 2 for teachers tomorrow that I think will be helpful for my future classroom, though.

I grew used to being around other autistic people and I enjoyed talking to people. I guess that counts as networking, right? I formed the sort of temporary friendships that you make when you're at a conference like this.

The conference ended at 4:15 today, though. I had sort of been excited about taking the time to explore the neighborhood. But it turns out that Milwaukee is sort of a ghost town... at least the area that I am in! It feels like someone took Milwaukee, turned it upside down, shook it until all of the people and stores and restaurants fell out, and then set it back upright like nothing happened. I went into a weirdly empty mall... it looked like it must have been an awesome mall at some point. But now the entire ground floor had been turned into a giant TJ Maxx, and the other floors were empty. The lights were still on and there was still music being piped in, and people were walking around like it was an ordinary mall. But they weren't shopping because there were no stores. It was creepy, so I left.

I came back to my hotel room, and found myself with the familiar sad, achy, lonely feeling in my stomach. Have you ever felt it? Its this feeling like you actually want to be around people, and there are people near by, but you are in a bubble. All the people from the conference had gone their own separate ways. I ended up ordering room service, and then taking a nap for an hour.

Now that I am awake and it is 10:24 pm, I thought I'd mention some of my thoughts about the conference overall.

First of all my mom is a meeting planner, and I am familiar with her telling me about the meetings she's run, so I had high expectations for this conference... and some of them weren't met. For instance, at most conferences, during the breaks they will bring out carts with snacks,,, sometimes really fun things like cotton candy and pretzels, but most meeting spaces have choices that the meeting planner gets to decide on. I was excited about that... but there were no snacks. Booo! I know, if I want to get a pretzel I should just go by a pretzel... but where? Milwaukee is a ghost town, remember?

Another thing... they had two social events set up. One was at the Harley Davidson museum last night, and tonight there was a Milwaukee Brewer's game. I expected that there would be transportation provided, like a shuttle or something. Instead, for the museum they just gave us a map. It was less than a mile walk, but you have to go over a really long bridge. It wasn't a big deal when I walked it in the early evening when the sun was still out. But I wasn't feeling good about having to walk back to my hotel in the dark. Especially since the streets are pretty empty at night around here. It isn't like downtown Chicago where the streets are still bustling at 10 pm! I ended up being offered a ride home from a lady who was the mother of someone in the band. She thought it was too dangerous for me to walk home. For the baseball game, we were actually given change and told to take the city bus to the game! This really freaked me out... I think it would have been doable in the early evening, but again, I wouldn't have liked trying to make my way back at night after a ball game. I ended up feeling so unsafe about it that I just didn't go... which is how I ended up alone in my hotel room instead. I hope that next time they will provide transportation to the events!

On that note, the social events didn't seem completely autism friendly. The Harley Davidson museum had a noisy band. I wore my headphones, but some people just didn't want to go at all. They were also hosting a motorcycle show the same night, so outside there was a big crowd with lots of engines revving and people speaking over bullhorns and all sorts of things breaking my ear drums left and right. I would like it if they hosted at least one event that was especially geared towards people on the spectrum. Every single day we go to places and situations where we just have to find ways to cope with the harshness while neurotypical people around us are calmly enjoying themselves. While we could go to the museum and the baseball game if we used lots of coping skills and what have you, it would be awesome to have an event that was specifically for us. Like someone thought to themselves, "What would people with autism enjoy doing?" Maybe some sort of museum trip that doesn't involve a band or motorcycles, with lots of interactive exhibits. Or give us some choices ahead of time and let us vote on one. That would also give autistic people more chances to socialize with each other. Sometimes it seems like these conferences are mostly set up for parents and professionals, and autistic people are really just there to help educate the parents and professionals, rather than to benefit for themselves.

Plus... I was sort of surprised that there were no children there! I've worked for child care companies at a lot of events that were conferences for certain disabilities, and they always involved kids. The parents had the option of paying for child care for their kids, those who had a disability and also the siblings. That way, parents at least have the option of bringing their children with on the trip, rather than trying to find someone to provide respite care for multiple days. They actually had Julia, the new Sesame Street muppet with autism, at the conference. It was a little odd since there were no children there. Julia was just walking around in the general population without anyone really noticing her. Poor Julia! (Although, I have to say, I've always been confused when they have character visits, because the characters are usually WAY BIGGER than you would have imagined them. Except for once when I took a friend's child to see Dora The Explorer in the mall, and I assumed it would be a costumed character, and it sort of was, but it was more Disney Princess style instead of Mickey Mouse style. It was an adult woman wearing a tiny Dora backpack and an outfit that resembled Dora's, The kid I brought was like, "That isn't Dora, that is just some lady!" But I digress...)

It may sound like I'm complaining, but I really did enjoy being at the conference, and I hope to come back next year. It is going to be in Washington DC next year! That sounds really fun!

Thursday, July 13, 2017

At The Autism Conference!

Just a random picture of me since you
haven't seen me in a while! 
Hi everyone!

Right now I am at the Autism Society's National Conference! (#nationalconferance . Yes, they spelled their hashtag wrong. It is annoying me terribly.) My nightmarish former employer actually paid for me to come here! Every teacher is allotted a certain amount of money each year to spend on things for their classroom or professional development. I decided to use mine on professional development... because from early on I had a feeling I wouldn't be sticking around, so I wanted to at least get something positive from it. If I had used the money to buy things for my classroom, I would have had to leave it all there when I left. Instead, I spent my own money on things for my classroom, so I could take it with me, and I spent my allotted money on this conference because they can't really take an experience away from me, can they?

It is interesting being here. There are a lot of parents and professionals, and also some people with autism. We are the minority, but I can definitely spot some autistic people walking around. At first it actually made me feel vaguely uncomfortable to be around lots of adults with autism. I couldn't figure out why. After all, I am an adult with autism, and I have always been on a never-ending quest to meet others like me!

But then I realized... it is because I am not used to being around adults with autism. I am used to being the autistic person in a group of neurotypicals. I'm used to being super aware of myself being the odd person in the group. I'm also used to sort of depending on the neurotypical people around me for guidance and cues. Being around other people with autism was like having reflections of myself all over the place.

There was also the added fact that my mom had been pressuring me to talk to other special ed teachers and "network" with them. I'm in a weird position because I am here as an individual with autism and also as a teacher. But obviously I am myself first and a teacher second. It is hard to try to balance that line... on one hand this is an autism conference and it is acceptable to just be yourself. For instance there was a blues band tonight, and I actually went to it and enjoyed the music while wearing soundblocking headphones, which made it pretty obvious that I was autistic but also made the event accessible to me. If I had been concentrating on being a professional, the expectation would have been to maybe do something less obvious, such as use ear plugs, which just don't work for me as well as headphones. Does this make sense to you?

Also... not sure if this will make sense either... but I kind of hate telling people I meet that I am a special ed teacher. Here's why. Lets say you are a random neurotypical person. Lets say you know me, and when you see me your impressions of me are that I act much younger than my age and seem like a young teenager. You see me fidgetting and pacing a lot, you note that when I talk my conversations can be sort of halting, you realize that I am wearing socks that don't match. You can tell that I have some sort of disability. Then I tell you that I'm a teacher. Your initial reaction may be, "How can she be a teacher?" Seriously. I am not being oversensitive. I know for a fact that a lot of people who meet me are surprised to find out that I can drive, live independently, and have a job at all. I do not match the average person's idea of a teacher. I know that what would be awesome is for me to use my position to educate others about autism, and about the fact that the diagnosis is not automatically limiting. Many people with autism do go to college and have careers and everything. But the thing is, I am not always in the mood to provide strangers with a learning experience.

So instead I keep it vague. If they ask what I do for a living, I say, "I work with children with special needs."

(If I am at some sort of conference specifically for teachers, then I admit that I am a teacher, but in those circumstances I am trying so hard to act "professional" and it is exhausting and emotionally draining.)

When I tell people I work with kids with special needs, they seem to accept that a lot more easily than when I tell them I'm a teacher. However, today I met a young man who also has autism. We were making small talk. I hate small talk, but I've found that many autistic adults try to practice their small talk at events like this. Small talk is dreadful. Anyways, he asked me what I did for a living, and I said, "I work with kids with special needs," and his automatic reply was, "Oh, are you a teacher?" Even seeing me with my autism hanging out, he assumed that I was capable of being a teacher.  There is some sort of lesson in that.

I have many more things on my mind about my experiences at this autism conference, but I will write more later. I'm going to try to start blogging more frequently again now that my soul-crushing job is finished. So, stay tuned!