My life with autism

Sunday, April 25, 2010

Taylor Crowe of Cape Girardeau gave a talk April 16 at California State University-Fullerton to the Fifth Annual General/Special Education Collaborative: "Autism, Inclusion and Evidence Based Practice." Here are excerpts:

... I was born and raised in Cape Girardeau, Mo. When I started school in the mid-1980s, I was the first person in the history of the public school system in our city to be enrolled with a diagnosis of autism. Think about that: in 1986, there weren't very many meetings like this. Most people wouldn't even have recognized the word "autism." It was that rare. At the time, my parents were told they'd probably never meet another child with autism, because in the mid-1980s only four or five out of every 10,000 children had autism. Times have really changed.

Nobody is totally sure what has happened to make autism so much more common. Part of it, undoubtedly, is that more children are recognized as autistic these days than they used to be. ... Something else has gone on in the last 25 to 30 years, because scientists have figured out that even with better diagnosis and recognition, autism is at least 10 times more common these days than it was when I was born. It's called the autism epidemic. ...

More than one disorder

Autism is a word that describes different things that all have similar characteristics. It's a misconception to think that autism is just one disorder. ...

I want to share some of the basics about autism with you. ...

Friendships are fun, but they're also very important. Your friendships tell a lot about who you are, but friendships are even more important than that. Without friendships I wouldn't be standing here today.

People with autism have to learn a lot of the things that come naturally to everyone else. We have to learn them and practice them. Things that seem simple to most people can be very hard for someone with autism. My friends helped me learn many of those things. My friendships taught me a lot about life, how to act around other people, how to have conversations and what to do in different situations. Friendships are that important. The greatest gift you can give someone is your friendship.

As I was growing up, I had occupational therapy and language therapy and lots of special education classes in school, and they were all very important to me and taught me a lot. But the friends I had, day in and day out, are what brought everything together for me.

... It took a lot of hard work from a lot of people for me to be where I am today.

From the time I was in grade school, my family, my teachers and the support workers at my school worked hard to have kids my age include me in their activities during school, in the evenings and on weekends.

Taking things literally

Here's an important fact: Autistic people take many things literally. You have to be very careful what you say to someone who has autism.

Simple things, even figures of speech like "It's raining cats and dogs," "Beat around the bush," "That's piece of cake" or "Hit the hay" might be confusing or upsetting to someone who takes things literally.

... Never presume someone with special needs doesn't understand you, no matter what age they are. He or she may not react, but it doesn't mean they're not listening. Be sensitive. ...

Something that's not well understood about autism is emotions. Many people believe that children and adults with autism don't really have emotions. I'm telling you from experience that not having emotions and not showing emotions are two totally different things.

How often have you seen someone with autism who's upset and you don't know why? The next time you do, think about what I've just told you. If you see a person with autism who's upset, they're upset for a reason. Unless you really know the reason they're upset, you don't know what to do to help them.

I lost almost all my language skills when my autism hit at age 3. After years of language therapy and hard work, I regained the ability to speak and communicate. I'm lucky. Some people with autism never have language, or they lose it and never get it back.

We all need to be sensitive to people with autism who have difficulty communicating, and everyone needs to know this: Even those of us with autism fortunate enough to have language often still have trouble keeping up with a conversation or really understanding many things that are said to us. You have to be patient, and careful, when communicating with someone who has autism.

Seeking comfort

The word autism comes from the Greek word for "self," because people with autism tend to be by themselves a lot. For a long time doctors and other specialists who deal with autism believed that people with autism wanted to be by themselves. But that's not exactly true. When you're autistic and the world around you is confusing and uncomfortable, sometimes withdrawing and being alone is the easiest way to find the comfort you need. But that doesn't mean you want to be alone. It just means you want to be comfortable.

If you're autistic and not around people very much, something else happens: you never learn how to act around people. Then, when you are around people, it's hard to know what's going on or what to do, and that's just the start of things. This is why it's important to involve children who have autism with the world that's around them and the people that are in it. This is why children, and adults, with autism need friends.

Making friends

When I was really young, even before I started school, my parents decided it would be good for me to be around regular kids, that doing this would let me see how other kids act and help me learn how to be a kid. They started with the children of their friends and kids from our church. It was tough at first, and not always comfortable for me, but it kept me involved with people and was really the beginning of me learning about how to act around people.

When you think about it, friendships really are an important way to help teach children with autism a lot of the things they need to know about life. This is why I think special-needs children and mainstream children should spend lots of time with each other, with helpful supervision guiding them.

One of the best ways to understand autism, and learn how to help someone with autism, is to imagine what it must be like to be autistic. ...

Many of you here today are involved in education, right? What I want everyone to do ... is to pretend that you're a student again. ... For some reason your parents took you to a school in a different country far away where everyone is doing strange things, and you have no idea what they're saying. Bells are going off and there are noises you've never heard before, and sometimes you're supposed to be in your chair and sometimes you're not, and there are unusual smells, and the teacher is talking, but so is the kid behind you, and so is someone out in the hall, and everything is new and strange and different. Even the shirt you're wearing is new, and it feels so weird that it's hard to stop thinking about it, except that the shoes you have on are new and also feel different and the seat you're sitting in isn't exactly like any seat you've ever sat in before. You're somewhere you've never been before, experiencing things you know absolutely nothing about. Nothing is familiar. It's scary and uncomfortable, but there's no way for you to tell anyone that this is how you feel. You can't explain what you're feeling. Now the teacher is talking again, and you recognize some of the words she's saying, but you still don't know what she's talking about. Nothing makes sense.

And sense is a good word to use here. A lot of the experts who have studied autism say it involves a disorder of the senses. Smell, taste, touch, sounds, even vision can be distorted with autism. ... Remember: Sensory issues are a big deal in autism. There are cases of kids with autism who are irritable and uncomfortable-acting, and it turns out that the labels in their shirts bother them so much and feel so bad to them that they can't think of anything else, but they aren't capable of explaining it, so they just suffer. ...

Now I'd like to tell you a bit more about what autism is. You need to know that just like people in general, there are huge variations between those of us who have autism. We're all individuals, and we're all different. Some of us have language capabilities, some don't. Some of us have certain gifts, many don't. But all people with autism, no matter what their level of ability, are defined by three common characteristics:

Common characteristics

1. All people with autism have some form of difficulty with communication.

2. In one way or another all people with autism have difficulty with social interaction.

3. All people with autism show restricted, repetitive patterns of behavior, interests and activities.

... In my case I have what's called high-functioning autism. Many of my problems with language stemmed from taking everything I heard literally. ... Don't ever forget that autistic kids take things literally and typically believe exactly what they're told. ... Don't tease someone who has autism.

... Autism is a "spectrum disorder." There are lots of different things that end up being called autism. One of those things is Asperger's syndrome. Asperger's is a lot like high-functioning autism, but there are definite differences in language skills and other areas as well. Like I said, I don't have Asperger's syndrome, but I have a friend who does. If you know or work with someone who has Asperger's syndrome, you'll understand what I mean when I say that one reason he and I are such good friends is that I'm a good listener, and he's a really good talker.

... Now let me explain about the restricted and repetitive patterns of behavior. Individuals with autism have a strong need for structure and order. When I was growing up, there were hundreds of examples of this in my life. One of them was that I always wanted to eat my breakfast cereal out of the exact same bowl at the exact same place at the kitchen table every morning. This was very important to me. ... It's a comfort thing: routine, order and repetition provide a necessary sense of comfort to someone with autism. Lack of order and disruption of routine can be extremely uncomfortable for someone who has autism.

Scientists who have studied autism say that another way this characteristic shows up is in a lack of imaginative play in autistic children. ... Among other things, autistic kids don't pretend that objects are different from what they really are. The play of an autistic child is very literal and usually very repetitive. ... Another aspect of restricted and repetitive behaviors in autism is that children with autism often become fascinated with parts of things rather than the whole thing. The typical example is an autistic child spinning one of the wheels of a toy car rather than playing with the whole car.

... Hand in hand with restricted and repetitive behaviors is a thing called "mindblindness." Mindblindness means that it's very difficult for a person with autism to figure out what someone else is thinking. Our imaginations don't work that way; it's as if those of us with autism are "blind" to how other minds work.

Normal children typically learn about tones of voice and facial expressions very early in life and can figure out what people are thinking from those clues. They develop what's called a theory of mind, which means that they learn that other people are capable of thinking different thoughts than they have. Autistic kids can't do this.

Visual learning

... People with autism are usually very visual learners. My experience with autism is that just hearing things, no matter how carefully they are explained, often doesn't work too well because spoken words can quickly become confusing. Visual learning is important. When autistic people can look at something, they can usually understand it better. ...

Also keep in mind that people with autism often have great memories. If we can learn and understand something, we won't forget it. But also remember that we have to learn many things that just come naturally to most people.

... There's a word that shows up when people talk about restricted and repetitive behaviors. The word is perseveration. It comes from persevere, and it's used to describe how people with autism seem to "get stuck" thinking about or doing one particular thing. They perseverate, doing that one thing over and over. ... Thinking about dates and calendars for long periods of time, perseverating on the concept of dates and time, how weeks and months work, and how leap years change the progression of things, is what allowed me to teach myself how to do calendar calculating in my head.

... Independence is my final topic. As autistic kids get older they start noticing things their friends or their brothers or sisters can do that they're not allowed to do.

I started noticing stuff like this when I was in elementary school. It really made me unhappy when my little brother, Austin, who is two years younger than me, was able to cross the street by himself and I couldn't. I didn't understand that he knew the safety rules about crossing the street and I didn't. All I knew was that I wanted to cross the street.

As I got older I noticed more and more of these things. Everyone here, think about this: People with autism need as much independence as possible.

When I was 16 I started to notice that my friends were getting their driver's licenses.

I mentioned this to my mom, but she told me -- and this was one of the worst moments in my life -- that she didn't think I'd ever be able to drive. ... Dad, though, believed in me. He said I should making driving my goal and convinced Mom it'd be OK.

This was all about independence to me.

I got a Missouri Driver's Guide and studied that book more than anything ever. I memorized it and did really well on the written exam.

Then I got a driver's education computer program and practiced with it. At first I did horrible. I tried to be careful, but not all the other drivers in the computer program followed the rules. This was part of what I needed to learn, and it helped me understand what driving might really be like.

Behind the wheel

Then I took driver's ed. On the first day I drove, the driver's ed coach told Dad that I was going to pass, and I did! I have an unrestricted license, but my coach said I still needed to work on defensive driving to be the best driver I could be, and he suggested that Dad continue to work with me on that.

When you think about it, defensive driving is hard with autism because it's a mindblindness thing. Why would anyone speed? Why would anyone run a stop sign? Why would anyone turn without signaling? ...

... If you ever hear it said that people with autism don't have imaginations, do not believe it. We have difficulty with imaginative play as children, and we have a tendency to take things literally. But don't for a minute believe that people with autism don't have imaginations or the ability to be creative. ...

I was 11 when I found out I had autism. I asked Dad about it, and he told me it was important to know that I wasn't handicapped. I was inconvenienced by my autism. You know what? That makes me no different than anyone in this room. We all have things we're good at, and we all have things we aren't very good at.

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