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Neurodiversity Awareness/Appreciation

Neurodiversity Awareness/Appreciation

Saturday, August 17, 2013

What I Wish People Knew About Aspergers Syndrome

The most important thing is to show your
child that you love and accept them for who
they are. 
 Not long ago, I wrote a blog post called My Answers To Common Misconceptions About ADHD. Several people said it was helpful. And I actually got a special request for a similar post about Aspergers Syndrome (which is no longer called Aspergers Syndrome, by the way, although it doesn't actually have a new name... it is now referred to as "an autism spectrum disorder" or High Functioning Autism.) 

One thing I do want to say is that this information is from my own experience, with myself having Aspergers and with working with children with different forms of autism. The thing about autism is that it is not cut and dry. Everyone with autism is different. It is hard to find two people with autism who experience it in the exact same way. If you know someone with an autism spectrum disorder, not everything on this list will automatically apply to him. This is what I know and feel.

1. We have feelings. There are people who think that those with autism spectrum disorders don't feel emotions the way other humans do. This theory was spurred on by the Sandy Hook shooting last year, when it became known that the shooter had once been diagnosed with Aspergers Syndrome. The truth is, people with autism do have emotions. What some of us have trouble with is recognizing and expressing emotions. See, kids autism have trouble learning things that aren't concrete, things that most people just sort of pick up by being around others. You can teach a kid to recognize colors. letters, and numbers. But how do you teach him to recognize sad when he feels it? The child may feel it, but not understand what it is, why he feels it, or how to express it. Most people with autism do learn about emotions as they get older. Adults can help kids learn to identify their emotions by pointing out the emotions of themselves or others. Say things like, "Look, the boy in this book is crying! How do you think he feels? I think he must be very sad!" or "You had a big smile on your face when you saw that new toy! You must be happy!" 

2. We can love others. Parents of children with autism used to be told that their child would be incapable of loving them. I hope that isn't true anymore! We do feel love for our parents and close family members and friends. Just like other emotions, expressing love doesn't always come naturally to people with autism spectrum disorders. For instance, a lot of people like to express love with hugs, kisses and cuddles. If your child with Aspergers doesn't want to hug you or get a bedtime kiss from you, it isn't because he doesn't feel love for you. It is because the sensory feeling of being hugged or kissed is unpleasant for them. They're trying to avoid the discomfort.(But not all people with autism dislike being hugged or kissed! Many especially like being hugged, because the firm squeezing pressure is calming.) 

3. We can feel empathy. The idea that people with autism cannot feel empathy was started by Leo Kanner, the first scientist to clearly define autism. When Hans Asperger "discovered" Aspergers Syndrome, he also noted that people with Aspergers didn't seem to feel empathy. "Seem" may be the key word here. If a child with autism isn't directly taught that someone who is crying, frowning, moping about, etc, may be feeling sad, he might not recognize that behavior when he sees it. If he's not taught that a person who is scowling, standing with their hands on their hips, and yelling, is angry, they may not recognize anger in others. These are things that most people pick up by "osmosis," just by being around other people. Also, even if people with autism do recognize others' emotions, they may not know the socially appropriate way to react. 
I have experienced this many times. One example is when a close friend of mine was separated from her husband. She had a lot of mixed feelings of being very angry at him, yet loving him and missing him so much when he was gone. She moped around a lot, and cried a lot. I knew the situation, and I knew that my friend was very sad and upset. I wanted to comfort her, but I didn't know how. I really didn't. I tried to help her by acting extra cheerful around her, taking care of her kids so she wouldn't have to, and bringing her food. But to her, it sometimes seemed that I didn't care about what she was going through. Another one of her friends came over and spent a lot of time hugging her and talking comfortingly to her, and she perceived that person as really caring about her. 

4. We want to have friends. An old myth about people with autism and Aspergers is that they don't enjoy having friends or being around others. This may actually be true for some people with autism, as well as for some people without autism. We all know people who are a little grumpy around other people and need to have a lot of "alone time." But most of us do want to have friends, and do feel lonely. If you've read this blog for very long, you've probably seen me experiencing that. I definitely do need my "alone time," but I also long to have friends. One big problem is that we don't always have the same interests or have fun doing the same things as the people around us. For instance, when I was around 12 years old, I still loved playing Barbies, playing in the sand box, and playing on the playground (especially the swings.) But my peers at school had moved onto interests like boys, fashion, makeup, and music. So it was hard for me to relate to the other girls at school, and vice-versa. As an adult, I still experience this... a lot of the other adults I know enjoy getting together for wine tastings or cocktail parties, going bar hopping, getting together to watch a sport, playing volleyball, or participating in a trivia contest at one of the local bars. I prefer actual activities, like going river tubing or going to Six Flags!
Another problem is that people with autism might not know how to approach someone to make friends. When I was very young, I had one way to approach kids I didn't know but wanted to play with. I'd ask them their name and tell them mine, ask them their age and tell them mine, and then ask them if they wanted to play. This worked out really well until I was about nine... after that it just seemed to make other kids think I was weird. 
One more of my problems that I mentioned earlier in my blog is knowing the difference between a friend and an acquaintance. When I was a kid I thought anyone who talked to me wanted to be my friend. Even as an adult, if someone is nice to me in any way at all, I start thinking of them as my new best friend! My mind is sort of "like" or "dislike" without so many gray areas in between. 

5. We kinda need to "stim." I hate the word "stim" but I'm not sure how else to refer to it. Usually stimming is a repetitive motion that someone frequently does. For instance, I rock back and forth (which is sort of a stereotypical stim, and I actually haven't met too many other people with autism who do it) and sometimes flap my fingers. When I was a kid I flapped my arms at my sides. When I worked in summer school I knew a boy who liked to spin around... he could do it forever and ever without getting dizzy. Jumping up and down, or clapping, can be stims. When we stim, we are trying to calm and regulate ourselves. I'm not sure how that works, but it does. When I rock back and forth, it kind of feels like gravity is pushing against me, and it helps me feel calm and less anxious. Sometimes I just rock because i'm bored and I need to move. 
I hear a lot of teachers and some parents scolding kids for stimming. Teachers will hate me for saying this, because many people who work with kids with autism want to teach them to look "normal" and fit in with others, and stimming brings attention to the fact that we're different. But telling us not to stim can be like telling someone not to scratch an itch or not to swallow. You just feel like you need to do it, and if you concentrate on not doing it, you get uncomfortable and anxious. 
I love when schools have a "motor room" or "sensory room" where kids can go. They usually have things like big, indoor swings, exercise trampolines, mats and tunnels for crawling on, things for climbing, places to roll, etc. I think kids should be able to go there and get their "stimmies" out, especially right before a time when they are going to be expected to work really hard or sit still and listen. I even knew a family who had a swing, a tunnel and a ball pit in their basement, and they'd have their 6-year-old with ADHD and Aspergers go down there to play right before bed, or right before any other time when they'd need her to be at her calmest. 
If your kid's stimming is embarrassing, or if you worry that others will make fun of him for it, you can try teaching him to do something less obvious when he's at school or out in public. Squeezing a little squishy ball, putting on chapstick, chewing gum or hard candy, wiggling your feet, or crossing your arms to give yourself a hug, can help. But once they get into the privacy of their home, they should be allowed to relax and let it go. 

6. Push us to improve, but don't push too hard! My parents didn't know, when I was a child, that I had Aspergers or ADHD. They just thought I was weird and they wanted me to be normal. My mom often pushed me to be more like the other kids. At the same time, because she wanted me to be normal, she often tried to control every aspect of my life. Even now, since I'm living at my mom's house, she tries to tell me what to wear and what to say to people, and warns me that if I don't, people will think I'm weird. When I was in high school a doctor told my mom that I would never be able to drive a car, go to college, get a job, or live on my own. My mom was so upset, but then she became determined to make sure i did do all those things. The problem was, she pushed me so hard, and made the consequences for not doing these things so dire, that I ended up failing at them all.
My thing is, know your kid. Don't know him in comparison to other kids his age, or in comparison to his older siblings and cousins and neighbors. Know him for himself, your child. Let your specific child be the guide for what he is or isn't ready to do. If you really, really want him to be on the soccer team, but he adamantly tells you he hates soccer, listen to him. Think about why you want him to be in soccer. Is it so he can get extra physical activity? See if he and you can identify another way he can be active... maybe a more individualized sport like running or swimming. If you wanted him to play soccer so he could learn teamwork skills, try to find another way for him to learn teamwork... I've heard of a really cool program that has kids with autism spectrum disorders work together to build things out of Legos and make stop motion movies. If your goal was to get him into an activity where he'd make friends and be accepted, maybe he could join Boy Scouts or Campfire USA, or some group based on one of his favorite interests. 
If you were hoping he'd play soccer because you always saw yourself as a "soccer mom"... I hate to tell you, but you might just have to give up on that. 
This can be even harder as your kid gets older. He's going to want to be more independent, but he may also still need help in some areas. Recognize that it isn't an all or nothing situation. Your kid may be completely independent in some things. If you're worried about giving your kid too much independence too fast, start small... instead of an after school job, let him start with a weekly volunteer job or a job doing chores for a neighbor. Let him learn about himself and what he is capable of. If he wants to express himself by picking out his own clothes, let him do so as much as possible. You might want to give him some advice, such as "You know, most teenagers aren't wearing Kermit The Frog T-shirts. Other people might see that as weird." But let him make the ultimate decisions. On the other hand, if he asks or clearly needs your help with some things, help him while also teaching him to be independent. (I still absolutely hate ordering my own food at a restaurant or ordering pizza over the phone, and other people I'm with still often do it for me. There is something about having to spontaneously talk to a stranger, that is hard for me. Writing down what you are going to say, or even just thinking it out in your head, can help some people. Encourage your kid to be independent, but still be there to catch him if he needs help.) 

I am starting to realize that each one of these points could be a blog post of its own. I tend to ramble on. There are probably still many more things I could tell you about Aspergers, ADHD, and life in general. If you have questions, feel free to ask them in the comment section, or email me. 

Oops and I almost forgot the Happiness Challenge! Today I am happy because it is Saturday and I am going to volunteer with the dogs. I am happy that my dad and I might go to the All Night Flea Market... unless it rains. I am happy that there is a block party on my street today... which I am not going to go to unless my nextdoor neighbors are going, because they're the only ones on the street that I'd prefer to hang out with. 

Goodbye everyone, have a lovely day! 

4 comments :

  1. Yes to the VAST majority of that - as the mom to an Aspie boy :) (who under the new guidelines may lose his diagnosis which is insane). Stimming is the hardest thing for us, as he's a jumper when he needs to stim, which doesn't work well in school etc for a 4th grade boy. We're working on other ideas instead, but none have stuck so far. We keep at it though. Our other challenge? He's REALLY into Puffles right now, which is a preK-1st grade sort of interest. And my parents keep encouraging it by buying him the stuffed animals, but kids at school? It's going to be ugly this year. It's a fine line to walk between letting him figure things out on his own and ensuring he doesn't cause himself major issues socially for when he's older since he'll continue to be around the same kids through high school.

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  2. Thanks for this information, I really enjoyed finding out more about the Autism Spectrum Disorder.

    I hope you go to the party and have a good time.

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  3. I can't thank you enough for this post. I read it on my phone when you first published it and I've probably thought about it every day since then. (Sorry for the extremely delayed comment!)

    I especially loved #6. That's my struggle: How to guide without pushing too much.

    Again, thanks so much for writing this. It was so very helpful.

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  4. This is fantastic! I have a 9 year old boy "on the spectrum". I gotta say I'm sick of labels. Anyway, I'd love to post this on William's blog. His blog is wcbenz.blogspot.com. He mostly writes about what he does at homeschool. We pulled him out of public school mostly because his teachers just weren't getting it this year. He writes about how he feels about his differences on February 11th, 2014. Let me know if I can link this to his page.

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