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Like most parents, Patricia Stacey's life was forever changed by her son's autism. She became an advocate, an expert, and a soldier in the fight against his disorder. Unlike most parents, Stacey recorded her family's struggle in her book, "The Boy Who Loved Windows." She joined us to share her experience as the parent of an autistic child.
The opinions expressed herein are the guest's alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.
Moderator: Welcome to WebMD Live, Patricia. I have to start by asking, how is your son Walker today? And how are you doing?
Stacey: He is doing actually very wonderfully. He's in the first grade and they've put him in a mixed 1, 2 classes; they put him with second graders. He's happy; he jumps; he runs; and he plays like any first grader. He's highly social, outgoing even. And he's highly intelligent.
He's empathic and quite a character.
I'm growing more and more relaxed as the days pass. I feel so grateful that my son is thriving. I confess that I did go through trauma and trauma can stay with you, and I find myself at times carrying the old nervousness, but I'm starting to get my carefree self back more and more every day.
Moderator: When did you first know that something was wrong with Walker? And what were the signs?
Stacey: I sensed right away that something was wrong with Walker as a newborn. He wasn't looking at me as my daughter had when we nursed. He was highly withdrawn. As time went on, we became increasingly alarmed at his inability to look us in the eye or laugh. He seemed so serious and troubled, and by the time he was six months old there was no denying that he was severely ill. He was drawn to light, and obsessively looked out windows instead of toward us. His muscles were so weak he couldn't use them properly and he flailed around in a frustrated and disorganized way.
Moderator: He displayed symptoms of multiple allergies -- and yet physicians claimed he couldn't have allergies.
Stacey: The doctors kept insisting that babies didn't really have allergies; they felt that his respiratory problems were a constant cold. They had no explanation for his excessive eczema. They insisted that allergies come later, when children are exposed again and again to substances. I had to beg a GI specialist to give him allergy tests, which turned out, of course, positive.
If a child's face turns purple just from touching a rug with his cheek, or if his stomach turns bright red when his sister kisses him, you can guess it's probably an allergy, can't you? Or at least I did. One thing important to me about that question is the idea that the parents, all of us, need to trust our instincts. We know when our children are ill, and we know when something is wrong.
Moderator: But the allergies were just a part of Walker's extreme sensitivities.
Stacey: I don't completely understand why a hypersensitive child would be drawn ineluctably toward light. But although the fact that my son was somehow hurt by lots of visual stimulation, he couldn't stay away from light. I think it must be an instinct in humans that we look toward light.
Ironically, however, Walker was also hyposensitive to physical pain. When he fell on his head he registered no response. What doctors are learning more and more now is that the sensory system is a fundamental part of human learning and sensory problems could be the cause of most of the psychological problems we see in autism. I read that 80% of what the brain does is processed sensory information and if a child is not able to take in the information that's coming from the world, the brain cannot develop properly.
In fact, recent research shows that much of the brain wires itself after birth, and the way it wires itself is through the information that it gets from the world. It is, for instance, light coming in through the eye that actually teaches the brain, and specifically the visual cortex, and teaches the visual cortex how to interpret that information -- in other words, how to see.
Researchers sewed closed the lids of a newborn cat. When they cut it open, months later, the cat was blind. That eye could never be trained to see, because that part of the brain had closed off, had never learned to see. So it's immeasurably important for children to who have sensory problems to be treated intensively for them so their brains can develop properly.
Moderator: And if a child is hypersensitive and avoids the pain of too much sound, too much visual stimulation, too much tactile information, and closes off to the over stimulation, his brain development is severely affected.
Stacey: Absolutely. Not only that, but imagine what happens to a child emotionally when he isn't able to be open to his mother's signs of love. He will be as emotionally stunted as that cat was visually closed off. That's perhaps the greatest tragedy of autism.
Member question: Do you know if most autistic children show the obvious, early signs your son did?
Stacey: I have heard that there are two major different manifestations of autism. One, doctors believe, shows signs right away, the other tends to show signs a little bit later, somewhere between 18 months and 2 and 3 years old when language is supposed to come in, and parents notice that it's delayed.
However, some researchers now are saying there are early signs probably in all these children. The signs are just subtler. Some researchers in Florida found that children with autism as babies did not put their hands out to protect themselves when they fell, for instance. Some say that children are not engaging at a high level, even when their parents don't see signs of a problem but a trained eye might have been able to see there was a difference.
Member question: What are some of the first interventions you did when you received the diagnosis of autism?
Stacey: Because Walker's problems were so severe we were lucky because they were noticeable. So when he was six months old, the physical therapist assigned to him, who also knew a lot about autism, worried that he was headed toward autism and encouraged us to work as often as possible to engage with him and to get him to respond to us.
We needed to do this in a darkened room or a room with all the shades drawn, because he was so sensitive that looking at us wasn't easy. She explained to me that faces have an incredible amount of information in them, and can be hard to look at for highly sensitive babies such as Walker.
Later we started seeing Dr. Stanley Greenspan, who insisted that we spend 10 sessions a day (each session was 20 minutes to 30 minutes long) working to get a response from Walker in what he called "circles of communication." A circle of communication means you smile, the baby smiles back; that's one circle. You give the baby a toy, the baby gives you the toy back; that's another circle.
Our purpose was always to increase the circles that Walker could be capable of. In the beginning, he could only do one or two circles and then he would be exhausted and might even fall asleep. We worked up over time to more and more, which turned into verbal conversations, and now Walker can sit at a table or play with friends and could chat for hours.
Moderator: There was a sense of urgency in your description of your efforts to work with your son as if you only had a limited window of opportunity because of the way the brain develops.
Stacey: Yes. The brain in the first few years of life does this fascinating thing where it starts making all kinds of connections, almost like phone calls -- millions and millions of phone calls. It can make as many as 250,000 connections a second, but if these connections aren't used they will be cut off like someone pruning a tree back, which explains why the cat became blind in that one eye.
So it's really, as I said before, stimulation through the senses that helps the brain make proper connections, and it's imperative that a child keep interacting so that his brain will make the connections that foster interaction.
Moderator: The obvious collision course then is properly stimulating a child who is overly sensitive?
Stacey: That's a fascinating question. A parent needs to learn to read their child's sensory profile, according to Dr. Greenspan. For instance, one child may need high-pitched loud speaking voices to be able to properly hear the voice or properly understand the emotion in the voice. Another child would jump out the window at the sound of such a voice. So it's important to tune in to each sense as a parent and see what works and what doesn't.
We were advised to constantly experiment. We found that dim lights helped. A heightened emotional sounding voice helped. Sometimes the kind of squeaky Mickey Mouse voice was appealing to Walker as a baby. We could not get too close to his face, and needed to draw back a bit.
The answer's going to be different for each child, and that's why these children can appear so different in behavior, because they are each experiencing a world vastly different than the next child, or even than we experience.
The key is to always stay in there working with a child. These children need -- we were told, and I've seen it now in my own experience -- they need hours and hours of one-on-one attention to help learn how to properly react emotionally, and I'd say the way you know you're on the right track is if you're getting a response and you see more emotion in it. If you scream at a kid and he runs out of the room, that's not an effective response, because it won't open the path to another circle of communication, it just closes the door. What you want is a positive response, and opening up, which can happen; I've seen it. It can happen very quickly, if you can work hard at it. Usually what it means is often intensifying the emotional level of your speech to try to get a child's attention.
I notice that I am speaking slowly for the transcriptionist in this interview, and it's also affecting my emotions, and also the clarity of my thinking. It reminds me, once again, that what they call the motor system is also another part of the puzzle for children with autism, and children with autism can be like slower computers that have trouble reacting quickly, and often people interpret the slowness as not caring. So what we always want to do with these children is teach them to come up to speed of typical interactions, so they're not misinterpreted and so that they can also follow along with what Dr. Greenspan calls "rapid back and forth," which is really the frequency that most typical people are interrelating on.
Moderator: There has been a lot of talk in the news about the cause or causes of autism. Did you try to look into what may have caused Walker's problem or were you primarily focused on finding treatments?
Stacey: Because time is of the essence for children with neurological problems, we were advised to set aside the question of cause, because it could not help us. We could only focus on treating the problem and making our son better and better. Since then I think more and more about the question of cause and have done research.
The most readily accepted cause people talk about is some kind of wedding of genetic propensity with possible insult from the environment, so that a lot of people now believe it's genetic in part, but it may be that what genetics triggers is a reaction from a neurotoxin in the environment. Some people are worried about vaccines; there are some drugs people are worried about; pollution too. And geneticists are supposedly on the brink of identifying one or two genes that are related to propensity for autism.
Moderator: Haven't large studies shown that there is no correlation between vaccines and autism?
Stacey: Many studies do show that there is no correlation, however parents, again and again and again, tell stories of having typical normal children and then having kids go into serious reactions to vaccines and becoming emotionally distant afterward and receiving autism diagnoses afterwards.
Moderator: You talk as though Walker is cured of autism, yet there supposedly isn't a cure.
Stacey: Autism is, at least in 50% of cases, considered to be highly treatable. Doctors don't like to use the word "cure" because it implies that something is gone forever, that the body has been infected somehow and the infection is gone.
With neurological disorders, when you talk about treatment, you're talking about new pathways in the brain that can take over pathways or functions that the ill part of the brain couldn't do properly. So you're talking more about recovery that is like what happens to someone after a stroke. That's a better way of talking about it.
Walker is doing wonderfully now. He still has allergies, but they don't bother him as much. We have taken him off the major allergens so they don't affect his life, except he can't eat wheat or dairy. He occasionally is excitable because of his nervous system being more sensitive than other people's, but personally I don't think it's out of the range of a typical classroom. At the end of the day in class he might start chewing on his sleeve or kicking at the edge of his table or fidgeting a lot.
I think more important than talking about whether someone has autism or does not, it's important to think of it as a continuum of problems with the nervous system that can run into the normal population. So at the top you might see a child who is completely dysfunctional and beat his or her head against the wall and can't talk, and coming down the other side of the continuum you might see people in normal behavior, more sensitive, more nervous, and high strung or less social.
So one of the recent theories now of autism is a child can be brought down the continuum as you work with him, so that he reaches higher and higher levels of functioning, or more typical levels of functioning in each area.
The important areas are the motor system (which means how quickly the person can move), coordination, desensitizing, or attuning the senses so that the child can take in more of the world, and you always want to work on emotional development, which can be done mostly by playing constantly imaginative games with your child, because the imagination is the place where we begin to understand other people's worlds, other worlds besides our own.
Member question: Do you think your son's progress is a realistic goal for all parents of autistic children?
Stacey: Studies show that the earlier one begins treating a child the higher your expectations can be; however, I have seen dramatic changes take place in children who were in grammar school as a result of doing Dr. Greenspan's floor time. I have heard that the intensity of floor time, the amount of it that a child receives a day can have a huge impact.
I do know that there are a percentage of children, not a high percentage -- I think it's somewhere 25% to 30%, who react slowly to treatment and may show less quick progress; however, another third can show good progress and at least 50% can show extremely good progress.
I've had two mothers tell me they never thought their sons would be imaginative or think abstractly, but within two or three months of floor time they become imaginatively and emotionally "juicy."
It's been wonderful chatting with everyone. I think there's a lot of hope in this field. It's a burgeoning field. My thoughts are with you. Keep working with your children and just keep looking for positive interaction. Emotional interaction is what will make the breakthroughs.
Moderator: Thanks to Patricia Stacey for sharing her experience with us. For more information, please read her book, The Boy Who Loved Windows: Opening the Heart and Mind of a Child Threatened with Autism. And be sure to explore our many articles and archived Live Events on the subject of parenting and children's health.
WebMD does not provide medical advice, diagnosis or treatment. See additional information.
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