Cages

My autism is just like a cage. I can look out and see the free people, but I stay stuck inside. I think the lion that paces in its cage gets used to its routine and knows the bars don’t open, but the lion doesn’t realize that other lions roam freely over vast savannahs, and that food doesn’t magically appear from nowhere.

It is different for me because my cage is like an invisible barrier. Bars, not of steel, but of impulsive behavior, stims, and limited speech have the same result though. I watch the people move around me and I am stuck behind my barriers. 

I watched my sister celebrate her birthday with her best friends this weekend. I couldn’t joke, talk, or join in. I told myself not to get lost in the jealousy because I envied her social pleasures – not that I listened to my own advice. In that way I am unlike the lion because I know what I can’t do yet. People overlook me because I am odd, or because I don’t speak, but I still watch, wishing one day to be liberated from my cage that traps me inside my own body.

Autism and Adolescence

Being a teenager is hard. Hormones cause mood swings and irritability. I guess it is worse in autism because our regulation of our emotions is weak. I often feel edgy and I know I am that way for nothing. It is the way I handle it though that makes a hormonal mood swing into a behavior problem. I believe I am feeling the same as all teens only I can’t control my actions as well as they do. Like them I am irritable and sort of moody and impulsive. Unlike them, I can’t cover it up so easily. I’m like a dog who snarls. They cuss and say rude things. I tense in my body. They bother others by teasing or bullying. It is a trying episode and I look forward to adulthood when I can feel calmer and more like a stable state than I do now. It is a thing we all get through so I guess I have a few more years of this.

Autism and Friendship

In friendship there is give and take, easy talk, shared interests, and socializing. I see the way my sister is with her friends. I can’t do what they do. I’m not referring to girl stuff. I mean the social stuff they do.; talking on the phone, sports, texting, meeting at each other’s homes, malls, and all the rest. How is an autistic person who is not verbal, limited in initiation, independence, and the rest, going to do that? We have an isolating illness. It stops us from doing the normal social things and it makes people want to avoid us too because we are so different and so hard to engage.

I have a few suggestions for how to be a friend to an autistic person.

-Don’t patronize, even if the person seems “low-functioning”. Who knows what is trapped inside?

-Stay friendly and say “hi” even if the autistic person is not animated in expression or doesn’t say “hi” first.

-Try to imagine what non-verbal messages the person is communicating in behavior.

-Help them stop if they get too stimmy.

-Connect in the ways you can.

I see some people are able to reach through the barrier with autistic people. They are energetic, friendly, not putting up with aggressive or bad behavior, positive and calm. The worst traits for an autistic person to be around are the opposite; lazy, grumpy, weak and afraid to set limits, negative and tense. I mean, who likes being with negative, grumpy people? But in autism we get so affected by the moods of others. I think friendship is different in autism. I am friends with people without socializing in the normal way, but I hope one day my skills will improve.

Me, Nick, Sydney and Emma

I have some friends I love to see. Unfortunately I don't live near them.I have a long drive of an hour and a half once a month to see them but I feel it's worth it. Each of us is living in Autismland but we can all communicate in typing and letter boards. Some use i-pads. I use a dynawrite or a letter board. Each of us is living the best we can in spite of our challenges.

We all have very loving families who noticed the potential in us in spite of expert advice that preferred to see us as "low functioning". Thanks to our parents' hard work we are free in life. I notice we all have very persistent, positive, and determined moms who didn't want to give in to a label that told them it was hopeless. The result is that we are their kids in all ways like any other in spite of autism. In this group I don't have to work on acting normal. I can be autistic with people who are friends, and friends with lovely, intelligent people who are autistic.

Autism, Other People, and Discipline

How do you treat people with autism? In my experience the way people act can vary widely. Some people stare or act like I’m invisible. Others try to be nice. These fall into two groups. First are the ones who act like I am not understanding  anything, who look at me like I’m a species of lower-cognition human. They try to help by talking slowly and giving me high-fives. They are well intended. I am not angry at not knowing and being kind. I do get angry if they know I understand and still act this way.

The other folks act pretty normally around me and ignore my weird stims when they come. I am so relaxed around these people. I do take advantage of the opportunities I get with people who are too understanding of me, however. If someone is not intuitive and I feel they are clueless, I can be a real pain, to put it mildly. I mean, all I need is a weak, sympathetic helper and I’m a strangely obnoxious guy. It gets awful because I don’t like being so stimmy and all, but I take advantage of the opportunity time after time. I laugh now thinking of the hapless substitute aide two years ago, who talked to me like I was retarded, watched me stim without helping me get control over myself, and told my mom I had a “good day” at school. When my aide returned the next day the assistant principal stopped her and said, “Never be absent again.” Ha ha ha. It’s funny now, if not then.

This is true in a way for all people. My history teacher was really structured. The students were sitting and working quietly. It was a really nice class. My English teacher was not good at structure or discipline. The same students were rude and disruptive. That class was more of a trial. The students were mostly the same people. My impression now is that a good leader is essential in teaching and in people who work with me. It’s a true thing even with dogs, or anything. We work on making sure our dogs are not the leaders of our home. I know people whose dogs run the entire house.

In autism, we have impulse control problems. My aide must help me control impulses, keep me focused, and help me function in society. I am improving in self control. Glad about that, but I’ll tell the truth, I’m likely to take advantage of wimpy people and I bet your autistic kid will too.

Hope this helps with the selection of an aide.