Autism and Asperger’s

Twelve-year-old Joshua Littman, who has Asperger’s (a form of autism), interviews his mother Sarah.

Watch first, then read what I have to say below.

My son is autistic, and his older sister has Asperger’s. I’m fairly certain my oldest daughter has Asperger’s, too. Autism and Asperger’s are a fact of life around my house. I have noticed that because of my experiences with my children, I am a much better teacher to my students with Asperger’s.

When Joshua expresses here his concern that people like his sister Amy better, I love his mother’s answer. She does not sugar-coat it. She’s honest, but she explains why people have the reaction that they do to Joshua. That heartrending question of whether he was the son that his mother expected, whether he met her expectations, is something that I have thought about a lot over the last year or so.

With my son, I live in the moment, and I don’t think a lot about his future. I don’t think about whether he will have a wife, children, a career. In fact, I don’t think about these things with my daughters, either. I think about where they are now and where they have been. I can’t explain why because normally I think ahead a lot. I imagine future trips to places I want to go. I think about things I want to teach and how I will teach them. I worry over retirement, which is some time away for me. But the point is that I think about my future all the time.

I cannot honestly say that I expected to have children on the autism-spectrum. I had no reason to suspect that I would. But in many ways, just like Joshua has with Sarah, they have exceeded my expectations. I could not imagine them other than how they are, and I’m so proud of who they are and how far they have come. I love them as they are, and I wouldn’t want them to be different. It isn’t that it’s easy. In fact, parenting my children is pretty hard sometimes.

But I got to see my son, who didn’t talk until he was four, teach himself to read and write, and eventually learn to talk. He tells knock-knock jokes. He tells complete strangers “hi.” Sure, he gets in their personal space and misreads their social cues when he does it. He’s a funny, sweet little person, though.

My middle daughter has an advanced vocabulary and a gift for art. My oldest is an extremely accomplished artist and writer.

They are all eccentric, quirky people, and they make me laugh. Life can be hard for them because of their social problems. They can be blunt to the point of hurting your feelings.

If there is one thing I could wish for them, when I do think about their futures, it’s that they will have teachers and friends that understand and accept them. They have so much to give, and I think their teachers and friends can learn from them in the ways that I have.

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Living with Autism

I don’t write about my children much here, and it is probable that most of my readers don’t know I have two children who have autism-spectrum disorders. Psychological testing done by Maggie’s school indicates she has Asperger’s Syndrome, which many people describe as a high-functioning form of autism. I don’t have any evidence to support this notion, but it is my belief that Asperger’s Syndrome is a little more difficult to spot that other autism-spectrum disorders because “Aspies,” as they are commonly called in the autism community by themselves and others, can often be quite bright. I think they often are labeled as ADHD or something else. Maggie appeared to develop quite normally, perhaps even precociously. She didn’t have problems until she started school, and those problems manifest themselves mainly socially — she is often in trouble in school, and sometimes, I feel so frustrated for her because I’m not sure how much of her behavior she can control. She has resource classes language arts and math. She receives occupational therapy and speech therapy (she still has a tendency to say things like “fird” instead of “third,” for example).

My son’s developmental delays are more noticeable. I can’t tell you exactly when we realized Dylan wasn’t developing at the expected rate. I attributed his slowness to talk to the fact that he is a boy — I had had two girls, and both talked when they were supposed to talk, but I had heard boys were a little slower. So, I didn’t worry. And then he was three, and I didn’t want to believe that anything could be wrong. I was in some denial for a while, and frankly, he probably could have received help a little earlier if I hadn’t been in denial. By the time he was three, as I said, we were concerned enough to seek help, but didn’t know how. I didn’t realize, for instance, that even though he was technically too young for pre-K, he might have been able to be placed in a special needs pre-K class because of his developmental delays. We didn’t consider autism a possibility at first because Dylan is a very affectionate child. He does not have a flat affect, and he isn’t fixated on only one kind of food — he eats pretty much whatever. One thing I have learned about autism, though, is that autism doesn’t look one way. If media coverage has done autistics and their families one disservice in particular, it is perpetuating a notion that autistics are all like Rainman — “idiot savants” who are otherwise intellectually disabled and can barely stand to be touched.

To be honest, Dylan has not been diagnosed in any official way. He qualifies for special education services through “pervasive developmental delay,” a conclusion reached after he was tested last summer. I do want to firm up the diagnosis, but all of Dylan’s teachers and doctors have said autism is the most likely diagnosis. Dylan just has not had the official testing done.

Before Dylan started school, he had maybe three words. His speech therapist said she thought he just didn’t understand the power of language because we met his demands when he made nonverbal requests. We began using a bit of sign language with him. I wanted so badly to believe that she was right — that he was just deciding not to talk because he didn’t have to. In my heart, I always knew that she was wrong. There was something more complicated than choice involved.

Dylan is now in a special needs pre-K. As I type this, tears well in my eyes because… it’s just been so remarkable. He talks all the time now. New words all the time. He is going through that parroting stage that kids usually go through when they learn to talk at about eighteen months. Only he is going to turn five next month. He actually learned to write before he learned to talk. We realized it when he had arranged his letter puzzle pieces to form the word “Jetix.” Jetix is a block of programming on Toon Disney. It’s geared toward boys with shows like Power Rangers and a cartoon Dylan loves called Pucca. I saw the puzzle pieces arranged to form “Jetix,” and I will never forget it because 1) it couldn’t have been accidental, and 2) it was a logo on the bottom of the screen on the Jetix program block, and I knew Dylan had been exposed to the word. I showed my husband what Dylan had done, and we took pictures of it. We sent them to the teacher who evaluated him for special education, and she found them very interesting. I remember we pointed to what Dylan had “written” and said the word “Jetix” aloud, and he was clearly thrilled. He had managed to communicate, and we had managed to understand.

A whole new world opened up to him, and the way I describe it is that Dylan sort of unlocked. He taught himself to read and write. Yes, really. My mother gave him a Doodle Pro drawing pad, which is like a Magna Doodle — you draw the words using a magnetic pen on a type of slate, and these little iron filings are attracted to the pen and rise to just under the surface of the slate, forming pictures. He began learning words left and right, writing them on his Doodle Pro, and showing them to us to hear us read them. When he started school, we bought him an extra one to keep at school. He still uses it to communicate, but he has learned to be more verbal through speech therapy. In many ways, I am finally getting to know my son as he learns to communicate his ideas and feelings. I can’t imagine the frustration he must have felt over not being able to tell us his wants and needs.

His teachers built on his new discovery — writing — but also encouraged verbal requests. He now routinely says “Help” if he needs assistance. He is still mostly parroting, but his progress is amazing, and I lay it all at the feet of his wonderful teachers. At the beginning of the school year, Dylan’s teacher took this photo of Dylan:

Dylan

He was a little scared to be there, and not sure about the new people, although he did touch the face of one of his teachers. Only a couple of weeks later, his teacher took this photo:

Dylan

Just now, as we sat together and looked at this picture, Dylan was able to tell me three things about it: 1) it’s a picture of Dylan, 2) his shirt is orange, 3) he is happy in the picture.

I think Maggie has a tougher time in school. Because Aspies appear to be so much more, well, normal, they are expected to act normal. If Dylan engages in autistic behaviors in class, his teachers deal with it on a completely different level than Maggie’s do — even her resource teacher. It’s tough, I know, because she infuriates me. And then I have to tell myself — stop, think about it. Like I said, even I’m not sure how much she can control her actions. Dylan’s self-contained classroom offers him the support he needs, but if Maggie does not need to be in a self-contained class, I don’t want her to be. I support the IDEA’s notion that she is entitled to learn in the least restrictive environment possible.

Looking around online today, I rediscovered a website, including an autism blog, belonging to a former student of mine. He was, as I recall, misdiagnosed with ADHD. I understand that he wasn’t recognized as autistic (he has Asperger’s) until he was a senior in high school, two years after I taught him. He has a lot to say about how he perceives things and about his experiences. I find it fascinating to read on two levels. First, as the parent of two ASD children, I often wonder what they will face as adults — what will they be like? What will they be able to do? While no two ASD people are alike, and my children are likely to be nothing like Cody, I do feel like I have a window, of sorts, into what it is like to be an adult with autism. Second, I am fascinated by the person he has become. He was already an excellent writer and thinker in 10th grade. I cannot take credit for teaching him to write well, as I inherited him as a student with those skills already in place. He is one of those students you never forget, and not because of any ASD-related reasons. He was just such an excellent student. I don’t think I will ever read The Crucible without thinking of Cody’s reading the part of John Proctor.

Cody has some very interesting points on his blog, including the idea that autism should not be viewed as a disease we need to cure, but as a different way of being. He’s articulate, and he knows himself. I can only hope my own children will be able to discover who they are and feel comfortable in their own skin the way Cody seems to be.  I know that was a hard battle for him, and maybe it isn’t over, but I also know he has support, which is another thing my kids can count on.

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