Every child on the autism spectrum is unique, with varying degrees of impairments and manifestations of the disorder. Parenting these children, too, brings a wide array of challenges, and also, special gifts. But parents and caregivers of children on the spectrum have some things in common -- a heightened awareness of a human condition, a greater tolerance for diversity of thinking, and a desire for society to gain a better understanding of autism.
Here, four parents share their experience in raising such children.
Eve: Mom of Sandra, age 8, PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified)
Gayle: Mom of Leo, age 9, autism
Shelly: Mom of Nick, age 11, Asperger's
Cornelia: Mom of Lily, age 17, autism
Names have been changed to protect the identities of the children.
When did you notice that something was different about your child?
Eve: I didn't. Sandra's my first child, so it was hard to notice. She spoke at 10 months; she was an affectionate baby. She hit all her milestones. There were tantrums, but I thought it was the 'terrible threes.' It was the preschool that suggested I have her evaluated.
Gayle: Leo is a twin, so I had another child to compare him to. When they were about 8 months old, I began to notice that the quality of his babbling was not the same as his sister's. And there were moments when it was hard to hold his eye gaze. He'd look at me and smile, but it would be fleeting. He wasn't inquiring through my face. At 11 months, I read "What to Expect Your First Year" and realized he wasn't doing what he should be doing by that age.
Shelly: When Nick was 2, he was incredibly hyper. I'd take him to a music class, or the park, and he was the kid who was always running out of the circle. He'd be interested in the fan on the ceiling, or the light switch, exploring things other kids weren't into. He was always pointing and talking about things around him, overly curious. But even though he was an early talker, he wasn't talking on point. Getting him dressed was impossible (he had sensory processing disorder), transitions were so hard, and getting him settled was difficult. But he is my first child, and I didn't think anything of it. This was my normal. I just thought I was pathetic. It wasn't until my daughter was born two years later and I began to see how she was physically a different baby. She clung to me like normal babies do; her hands weren't dangly like his had been.
Cornelia: Lily is a twin, and for the first year, she was the faster developing baby. And then around 12-13 months, the switch happened, though it was very subtle. She had language, but stopped responding to her name. When Lily was two and a half, a friend of ours had seen a documentary on autism and had suspicions. We thought our friend was nuts, but brought our daughter to see a nurse practitioner. By age three and a half, Lily no longer spoke.
Was it difficult to come to a diagnosis?
Eve (PDD-NOS): I was trying to diagnose it myself... was it a processing disorder? Sensory issues? We took her to a neuropsychologist for a full evaluation. It was a 10-hour deal. She was 3 years old when she was diagnosed.
Gayle (Autism): At about age one, I took Leo to the pediatrician and shared my concerns about his language development. I thought the doctor would poo-poo me and say, "Don't be ridiculous. They're twins, he's a boy, they were preemies." But he asked me very detailed questions - is he pointing? Is he saying 'mama' and 'dada'? The answers were mostly no. The doctor thought he should be evaluated. In Connecticut, where we live, the state is mandated to assess the child if there is concern, so a program called 'Birth to Three' did evaluations and recommended services.
Shelly (Asperger's): When Nick was three, he was diagnosed with ADHD, but with a confluence of other issues - oppositional defiance disorder, sensory processing disorder, OCD. I lived in NYC and it became a full time job for me, talking to all the different people in order to get anything done. I had to find early intervention schools; he had a social evaluation. In first grade, medication was suggested so I broke down and put him on Ritalin. It didn't work and actually made some of his symptoms worse. The psychiatrist said, "This means it's not ADHD." In 2nd grade, a psychologist with expertise in ADHD went to the school and observed him in class and on the playground. He saw that it wasn't ADHD, but rather Asperger's.
Cornelia (Autism): Lily's initial diagnosis was PDD-NOS, because she didn't have the OCD component. Remember, this was 15 years ago and it was still such a rare disorder at the time. Where we lived, our pediatrician had never treated a child with autism before. Within 5 years after Lily's diagnosis, he had 16 autistic kids in his practice. Subtypes weren't known then and it was very hard to get good information.
How did it feel getting the diagnosis?
Eve (PDD-NOS): I was 7-months pregnant with my third child and I was devastated. My husband said to me, "She's the same kid she was yesterday." That was so eye opening. I didn't tell a lot of people for a long time. Now, I know I can't change it, so I'm more open about it.
Gayle (Autism): During the evaluations, I was conflicted. I wanted the results immediately, but I didn't want them at all. This has been my own struggle throughout the journey - the denial as a coping mechanism. There was so much trauma in getting the diagnosis. It happened so fast. One week, I had a hunch, and then two weeks later I had a doctor telling me I have a child on the spectrum. It felt like a rape. I had to constantly remind myself that he was the same child he had been two weeks before. It wasn't a cancer diagnosis (though it felt like that); it wasn't the end of the child I knew, just the lens through which I was now going to see him.
Shelly (Asperger's): I found myself sobbing in every doctor's chair that I sat in those years. It was very disorienting. I'd blame myself, thinking that something I'd done is making this happen. Was it something about the birth? When I finally learned it was Asperger's, I felt like things made sense and it became easier to treat him. The treatments were there, and many of them the same from when he was little. But now we were looking at him differently.
Cornelia (Autism): Thank goodness I had twins, because my typical daughter acted as the 'control.' I knew it wasn't something I had done. I can't imagine what it was like in the 1940's or 50's when experts blamed autism on evil moms. With all the acronyms - PDD-NOS, OCD - we joked that it should be WDKS (We Don't Know S--t). At the time of her diagnosis, the incidence was 1 in 10,000 children. Now it's around 1 in 100.
How has your understanding of it all changed from when your child was first diagnosed?
Eve (PDD-NOS): I thought it would get better. I thought she'd get some therapy and be fine by the time she was 6. They kept saying 'early intervention' and we got her that. But as she gets older, the difference between her and her peers is more glaring. I didn't know 5 years ago that there was such a spectrum. Now I can pick these kids out at the mall.
Gayle (Autism): The only thing I knew at the time was Doug Flutie, the quarterback who had a son with autism. I thought it meant a child doesn't speak, who lacks the ability to receive and display affection. I still feel like I know very little. I can't tell you generalities; I can tell you specifics as it relates to my son. He has learned how to look good in the world, how to try and mold himself into what he's supposed to act like. But at the core, there's a different way of being. It's not other-focused; it's self-focused. It doesn't come naturally for him to be innately motivated toward another person.
Shelly (Asperger's): When I first heard Asperger's, I didn't know what it was. The doctor had to describe it and recommended a book. All I knew was that it was on the autism spectrum. I went from not knowing anything to becoming quite aware. I know that every kid is different, and every adult is different. I can't look at an adult with Asperger's and say, "This is how Nick is going to turn out."
Cornelia (Autism): Many people have seen Rain Man and that is their only perspective of autism. It's a difficult thing to explain. People understand Down's syndrome; it's linear, the kids look alike. Autistic kids are so different. You just have to explain your own kid. Over the years, I've seen a lot more services become available. There's a much greater network of parents with resources.
What's a typical day like for you, and how is that different from a parent of a 'typical' child?
Eve (PDD-NOS): I have to be stricter. Once I say no, I can't change my mind. I have to make a schedule for Sandra and be more rigid about it. There's a lot more to think about - it could be a full time job. I'm always reading up on new autism therapies, trying something different like putting her on a program to try new foods. I also have to keep my other two children from not feeling left out. We've explained it to my younger daughters. Sandra's brain is wired differently and that's why she has a therapist work with her everyday. She has an aide at school because of her autism. She's not a brat when she has a tantrum. But when she has a tantrum, I'm supposed to ignore the behavior. So I'll pick up a magazine while she's screaming in my face. Or I try to redirect her. Maybe I'll tickle her or talk about something else. She's unpredictable which gives me incredible anxiety. I've tried to figure out what precedes the outbursts, but there's no predictability.
Gayle (Autism): It's depressing. I have to battle those depressing moments constantly and reframe things for myself. Every moment is a moment for social learning. It's always on my mind, I'm in constant communication with his therapists. I missed a decade of television and being able to drop him off at birthday parties and leave knowing he wouldn't stick his fingers in the cake. It's a level of vigilance I wouldn't expend on a typical child. I'm the CEO of Leo. I can't go to a BBQ and schmooze it up with the girls because I have to watch him out of the corner of my eye. It's like having a toddler in a big boy's body. There's a lot more time spent thinking about the mundane. I still have to pack the metaphorical diaper bag. I have to be so proactive trying to predict what's going to set him off. But I can't save him from the world; I have to prepare him to accept powdered sugar on his pancakes.
Shelly (Asperger's): Nick's gotten better, but it used to be that just getting him dressed was hell. I'd have to wrap my legs around him. He wanders so much. Brushing teeth is so hard; he takes so long to do it. Things take a really long time. When he was younger, just getting him out of the car to go to school without him lying down in the gutter was difficult. He's absentminded. I have to ask him 10 times to get dressed. I have to usher him throughout his day. Breakfast is not so great. He hates juice; he's repulsed by it. His sister teases him and he screams. It goes on every morning. The obsessive-compulsive part of it is intense and it manifests itself differently year to year. Now he talks to himself out loud. The social challenge is huge. As a young kid, they can pass for quirky. As he gets older, these quirks become unnerving to some people.
Cornelia (Autism): By the time Lily was 4, we had to put high fences around the yard so she wouldn't wander into traffic. We had locks on everything so that she wouldn't pour milk down the sink or punch the wall with knives. At age 10, she turned violent. She had an unknown sinus infection and couldn't express when she hurt. So she demonstrated it physically. She had me in a headlock in the middle of the night once when she had gotten her period and had cramps. The self-injurious behavior was so bad that we'd have to cushion her head and hold her down until the Advil kicked in. Part of her doesn't work. She knows 10 signs (of sign language) but can't indicate when she needs to use the bathroom. There are mornings when I wonder if in my past life, I was the person who shot Gandhi.
What would you like the world to know about autism?
Eve (PDD-NOS): There's a misconception that these kids are brats. I get funny looks in public until I let people know she has autism. I want people, when they see a child acting up, to stop making an assumption that he or she is misbehaved or the parents are bad parents. I want the world to know that this sucks. It's exhausting and frustrating. I know my daughter is in there.
Gayle (Autism): I think we all need to work harder about pushing the outer limits of what we view as acceptable and normal. We need to push our comfort level out a bit to include people who fall out of the norm. Our definition of 'valuable' needs to be expanded. It seems that the initial take on the world is how to exclude v. include. I'd like to create some receptive community - how do we teach kids that we're all different and it's important to understand what makes us who we are to each other. It's funny; my daughter knows that Leo has autism. The more we tell her about it, the more empathy she is forming. And the less tension and anxiety there is in our house.
Shelly (Asperger's): When you get to know my son, or any person with this neurological makeup, he is a good person. It's very hard for him to lie or fake things. He doesn't know how to do that. He may act out in frustration, but there's not a malicious bone in his body. He's incredibly funny and loving. If he gets a book on science or Egypt, he'll kiss it. He's 11 years old, but we still cuddle all the time. I wish people could look behind the diagnosis or label and see the child. There can be a lot to celebrate, even though it's really hard.
Cornelia (Autism): I think there's still an air - much less now than decades ago, thankfully - that somehow this is the parents' fault, specifically mothers. My father believed that. He didn't speak to me for 10 years because he thought I did this to my daughter. My grandmother actually suggested shock therapy to snap Lily out of it. 30 years ago, we caused it. Now we're to blame if we don't work 13 hours a day to cure it. The sentiment is out there. The guilt component can get you if you let it, but you have to talk to other parents to find the support. Thank God for the Internet. To have online communities to access fellow parents changes everything. Also, I know school districts are strapped. But cutting special education is such a mistake. The effort you put into these kids as children could make or break whether they end up in full-time care as adults. And that costs a lot more.
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