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Another NYT follow-up post – the UW research study really sparked emotion!

July 25, 2009

The Unvarnished Reality of Autism

The University of Washington released a study earlier this month concluding that being the mother of a child with autism is more stressful than being the mother of a child with other kinds of developmental disabilities. One reader’s first reaction to this news was “I could have told you that,” because her son, who is five, has Asperger’s syndrome, and his condition rules much of her life.

Then she read the report, and became angry. Its description of life with a child who has autism was sanitized and simplified, she thought. In part that’s because the words that exist in the English language fall short in evoking what she calls “the nightmare.” She understands that severity of symptoms, like autism itself, is a spectrum, and that her experience will not be identical to everyone’s. She also knows that she and her husband’s recent decision to medicate, which they struggled with for some time, has made her family’s world much more livable. But those caveats aside, her experience, she says — of days punctuated by the rages of her child — is certainly common to many, and rarely reflected in the sanitized descriptions she too regularly reads.

So she wrote a response to the “sugar-coated words” and asked me to share it with readers. She also asked that I withhold everyone’s names, to protect the privacy of her child, and because, she says “even some of my closest friends don’t know what it’s really like.”


It’s time to stop mincing words.

“Agitated?” Here’s what agitation looks like at my house. It’s nothing like the temper tantrums typically developing toddlers throw. It’s scary. Dangerous. Violent. And, until I learned to spot the signs, unpredictable. Even at five and highly verbal, when our son’s rage and frustration spin out of control he’ll lash out by hitting, biting, kicking and spitting. He’ll throw his toys, chairs, table and easel; run around breaking things; and become a threat to us and to himself. One especially terrible morning when he was 4, he threw a glass across the room, where it exploded against a wall. Then, all revved up and fascinated by the shards, he tried to run on them, barefoot. I barely grabbed him in time to avoid a trip to the emergency room.

We have learned what to do. My husband and I had to take parent training courses (another euphemism, if you ask me), where we were taught how to wrestle our smart, beautiful son, who can be incredibly funny, sweet and charming, into a restraining hold that resembles nothing more than a human straitjacket. His response is to head butt and bite. I’ve worn long sleeves on stifling summer days to hide the bruises along my arms. “Agitation” does not cause this.

And “irritable” does not begin to describe things, either. Anxiety is a key component of Asperger’s, and because our little boy’s brain works differently from most people’s, the world is a confusing and scary place for him. He can be playing so nicely with a child one minute, then hit or pinch them or scream in their face the next. He craves schedules and predictability, and the slightest change can set him off.

Noise “irritates” him too. He can do quite well in a calm quiet setting, but he will fall apart when there are too many people or other stimuli. To stave off the anxiety, he perseverates – repeating behaviors over and over again. Imagine trying to go on a quick errand with a child who, starting from toddlerhood, has worked through a repertoire of perseverations: wanting to touch every car, then every door, then every pay phone. Lately, he’s repeating a commercial catch phrase he’s heard on the radio ad infinitum.

“Crying.” The study talks of the crying. The word pales in the face of our son’s dissolutions into tears. These days, if he hears a simple “no” or learns of some change in plans, he might launch into a 10-minute jag, where he argues fiercely with us in between the sobs. Then he can quickly escalate to ear-piercing screams lasting another 15 minutes or more. It’s a wonder none of our neighbors have misconstrued what they might have heard and called 911. The shrieking does subside, back into sobs, and that part is somehow harder to watch, reminding me how terrifying it must be to feel to be that out of control, especially when you’re a small, anxious child.

“Inappropriate speech?” Our son, an uncanny mimic of anything he hears anywhere, could swear like a sailor when he was three. “Not able to follow the rules?” His anxiety has turned him into a defiant little control freak who wants to set them himself, then make everyone else — including other kids, and even us — follow them. “Impulsivity?” He has stopped my heart several times by dashing across our (thankfully quiet) street, unresponsive to my screams. “Strong-willed?” Fine, you take him for an hour.

“Stress?” What all of the above collectively does to my husband and me can’t possibly be expressed by those six letters. Having a child who, at times, is unresponsive, lost in his own world. Struggling to get doctors to listen, so your son can get diagnosed and treated correctly. The search for an appropriate school. The arguments over medication — weighing benefits against the frightening side effects. My depressing weight gain, some 40 pounds or more (I eat as a way to cope.) The deep mourning for the loss of the child we thought we would have, watching longingly as other parents play with their “regular” kids.

There are stares and glares of a holier-than-thou world at large, as judgmental strangers, neighbors and, worst of all, family members have clearly labeled my “misbehaving” child a “bad” boy and me a terrible parent. (No, thank you, he doesn’t need “a good spanking.”)

There’s also the isolation. I’m a very social person and before my son developed his “bad reputation,” I worked hard to cultivate friends in the building. But then the play dates and birthday party invitations dried up. It’s a terrible thing to be ostracized. As much as I might understand why parents would want to steer clear of us, my son has been doing much better lately, and there have been long stretches when I’ve felt very lonely for both of us, and very bitter.

Going to the store or a restaurant usually involves some sort of disaster — I’ve had to chase him around and around the aisles of our fancy market after he snatched a candy bar, then drag him to the sidewalk for a time out — and our mess is on display for all to see. I have to deal with all this more often than my husband; I’m pretty much past the point of caring, but he still worries a lot about what people think.

I was never a yeller, so I’m not proud of myself when I lose it. I know I’m supposed to be the in-control adult and my son’s role model. I know I’m more effective when I’m calm but forceful and that yelling only makes him worse. But he pushes long and hard. These days when I rage, he’ll sometimes ask, “Mommy, why are you so angry?” That makes me feel truly terrible.

And there is the toll on our marriage. I brought in a healthy paycheck for many years but as I’ve become my son’s caregiver, my career has been put on the backburner. This has thrust my husband into the stressful, unexpected role of breadwinner. For the first time, we fight about money. We have been at odds over our son’s issues and, given our different parenting styles, how best to deal with them. And he takes so much of my time and energy, there’s not much left over for me, let alone my husband. Somehow, we’re hanging in there, through the unimaginably worst of times.

So don’t throw your euphemisms my way. Recognize that life with my son’s Asperger’s — life anywhere on the autism spectrum — can be at least a periodic nightmare, and respect my struggle enough to allow me to call it that. Know that not everything is bad — I am blessed with many moments of joy with our often adorable and cuddly boy. We share jokes and laugh together; we play and sing and dance; he holds my hand as I sing him to sleep each night, kisses me back and tells me, “I love you, Mommy.”

Those are the times that keep my going, but also break my heart — to see what he can be, and to think his volatile autism could hold him back, could ruin everything. Because to pretend otherwise, to sugarcoat with euphemism, does not make it go away. And it doesn’t help me to help him.

From Lisa Belkin: For a response to this, from an adult with autism who says she put her parents through all of this, go to the follow-up post, Autism from the Inside Looking Out, which you can find here.

NYT follow-up to post

July 20, 2009

The Stress of Autism

By Tara Parker-Pope

Raising a child with any developmental disability or behavior problem is difficult. But is there something uniquely stressful about autism? That is the question researchers at the University of Washington Autism Center tried to answer in a study of mothers of children with developmental disabilities.

I spoke with Annette Estes, associate director of the center, about the research and how it might make a difference for parents of children with autism. Here’s our conversation.

Mothers of children with autism had higher levels of parenting-related stress and psychological distress than mothers of children with developmental delay

July 18, 2009

Mothers of children with autism had higher levels of parenting-related stress and psychological distress than mothers of children with developmental delay. Children’s problem behavior was associated with increases in both parenting-related stress and distress in both groups, but this relationship was stronger in moms of children with autism.

Newswise — Ask any mother and she’ll tell you that raising a preschooler is no easy task. Now imagine what it must be like to bring up a child with autism or a developmental delay.

Researchers at the University of Washington’s Autism Center asked mothers about their experiences and found that moms of children with autism had higher levels of parenting-related stress and psychological distress than mothers of children with developmental delay. Children’s problem behavior was associated with increases in both parenting-related stress and distress in both groups, but this relationship was stronger in mothers of children with autism.

“Both groups of women are dealing with children who need high levels of care-giving. But there is something about autism that is making a difference and adding stress and psychological distress to these mothers,” said Annette Estes, lead author of a new study and associate director of the UW Autism Center.

Surprisingly, the research also found no link between a child’s decreased daily living skills and increased parental stress and psychological distress.

“This finding was counterintuitive,” said Estes, who is also a research assistant professor of psychiatry and behavioral sciences. “If a child has more needs in getting dressed and in other daily living skills, that means the parents are working harder and seemingly would be under stress. But it is not the hard work that is stressing the mothers. Our findings really pointed to the behavior problems that can occur with autism. Children with autism had significantly higher levels of problem behaviors than children with developmental delay.”

These behavior problems included such things as irritability, agitation, crying, inappropriate speech and not being able to follow rules.

For this study parental stress was defined as being the stress directly related to a person’s role as a parent and parenting a child with a disability. Psychological distress is more general stress, such as that experienced by a person who is nervous about her job or life in general but may or may not be confident about her parenting.

The study included 73 mothers and their children – 51 of the youngsters had an autism spectrum disorder and 22 had developmental delays. The families were part of a larger study exploring the neurobiology and developmental course of autism. The children in the stress study were predominantly male, white and about 3½ years old when data was collected.

Parents filled out a number of detailed surveys that measured parenting stress, psychological distress, problem behaviors and adaptive functioning level. The last charted a child’s daily living skills in such areas as dressing, feeding, using the toilet, bathing and helping with household chores.

The study, Estes said, looked at psychological stress, not psychiatric disorders in mothers.

“We were not diagnosing disorders and our sample of parents likely did not include the most distressed parents, those who did not have the resources to take the time to participate in a research study or those who were probably too busy and stressed raising a disabled child to participate.

She noted that problem behavior needs to be a crucial target in treating children with autism and developmental delay.

“We need to focus on it because it appears to have the potential to disrupt the family, parenting and the child. While problem behavior is not a core element of autism, it might rise to the top of the issues that have to be dealt with first in a clinical setting,” Estes said. “Help in what we call family adaptive functioning is what we need to figure out in these cases. How to help families is important because high levels of stress and psychological distress can interfere with early identification of autism and interventions which are delivered by parents. There’s another good reason to do this: Parents who feel supported can better support their children.”

The paper has been published in the online edition of the journal Autism and the research was funded by the National Institute of Child Health and Human Development. Co-authors are Jeffrey Munson, an assistant research professor in the UW Autism Center; Geraldine Dawson, a UW emeritus professor of psychology who is now the chief science officer of Autism Speaks; Elizabeth Koehler, a former UW biostatistics graduate student; and Xiao-Hua Zhou and Robert Abbott, UW professors of biostatistics and educational psychology, respectively.

2 interesting articles this week

July 11, 2009

New Study Pinpoints Difference in the Way Children With Autism Learn New Behaviors

Pilot Study Confirms that Children with Autism Need to be Taught in Smaller Groups

NYC public school with 560 students with autism

July 3, 2009

This is a very interesting article.  I did not know such a public school existed.  It certainly would not be allowed in our State.  But, we should all be watching their results very closely.

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