11/18/08

Sorry there's been a delay, everyone's been sick, even the dog, so we haven't been moving forward on much lately. In fact, yesterday was Tyler's first day back at school since I picked him up sick last Tuesday! I did briefly speak to the OT today who said he's doing wonderful. We are working on a sensory profile for him so they can better plan therapy based upon his sensory needs.

The reason I'm writing today is to actually share someone else's blog. I love reading stories about people's children who are in recovery, it just helps keep me strong. This one also shares the medical side of recovery and it's good to know that they are looking at the brains of children who have recovered.


Paging through 176 MRI scans of my 9-year-old’s brain on my home computer, I discovered a button that let me play them as a movie. Gray swirls burst onto the screen, dissolving into one another and revealing a new set of patterns. Beams of light faded in and out, some curving and traveling around the different regions of his brain. I saw the squiggly folds of his cerebral cortex, the gray matter that is the center of human intelligence.
These scans, the most intimate pictures I had ever seen of my son, Leo, may help researchers understand what’s going on in his head — and relieve him of a diagnosis that I have devoted several years to helping him overcome.
Leo, identified as No. C1059, underwent the scans as part of a research study at the Olin Neuropsychiatry Research Center at Hartford Hospital in Connecticut. He was thrilled to earn $200 for taking part. I smiled along with him, because I could remember the days when he had a limited range of emotions, and pride was not one of them.
The study is examining 35 children, ranging in age from 8 to 17, who once had an autism-spectrum diagnosis but no longer do. Leo was invited to participate based on how I had described changes in his behavior and communication skills since he was given an autism diagnosis seven years ago. It is one of several studies underway to clarify the experiences of a growing number of children who are apparently emerging from autism and its related disorders to function almost indistinguishably from their peers; it aims to reveal whether it is indeed possible to recover from autism.
According to many experts, recovery from an autism spectrum disorder — a pervasive impairment in thinking, feeling, language development and the ability to relate to others that affects one child out of every 150 in the United States — is real. But the meaning of recovery differs from researcher to researcher as much as it does from parent to parent.
I know what recovery means for me: to have a conversation with Leo, especially about love and friendship, and to see him play a team sport. When Leo asked to join his school’s soccer team this fall, I thought back to the distressing days when he ran aimlessly around the back yard, clueless about the purpose of the two goals I had set up.
The idea that a child can recover from an autism spectrum disorder is controversial. Skeptics argue that recovery is impossible from a disorder they view as lifelong: more like being born with clubfoot than twisting your ankle. And if the condition is “cured,” they say, then it can’t have been autism to begin with. No one knows how many children have lost their diagnosis since there are no nationwide statistics accepted by the medical establishment.
“If I absolutely had to guess, I would think that the percent that are capable of recovery might be in the neighborhood of 20 percent,” said Deborah Fein, a professor of psychology at the University of Connecticut and lead researcher of the study my son participated in.
Some experts don’t like to talk about recovery, because it implies no detectable difficulties. “Sometimes parents want me to say their child is normal,” after improving so that they no longer meet the specific criteria for a diagnosis of autism, said Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and one of the world’s leading autism experts. “If by that you mean no detectable social troubles or oddities, that is uncommon,” he said. “It happens, but usually there are some problems that persist, even if they are minor.”
Those problems, Fein said, include other learning disabilities and psychiatric conditions, most often attention-deficit hyperactivity disorder. Social phobias may also persist. A child with a social phobia is capable of making friends but avoids big parties and being the center of attention.A Catch-All Diagnosis
My son was 2 years old when a behavioral evaluation labeled him autistic. The report said:
“Neurological examination revealed a self-directed, language-delayed boy who had pacing behavior.
“Imaginative play was infrequently seen . . . . The results for Leo using the CARS [Childhood Autism Rating Scale] were consistent with a diagnosis of autism.”
Leo had the three cardinal traits of autism: poor social interaction, lack of verbal and nonverbal communication, and funny mannerisms, more clinically described as odd and repetitive behavior and fixed interests. Three months later, he received a diagnosis from the Yale Child Study Center of PDD-NOS, or “pervasive developmental disorder — not otherwise specified.” It’s a catch-all diagnosis on the autism spectrum for people who are less likely than others to have intellectual impairment.
Words popped out of Leo’s mouth every now and then, and he repeated phrases from “Thomas the Tank Engine” videos without any context. It was a challenge for him to express a basic need, such as “more juice.” He ignored group activities and never broke out in a big smile to share an accomplishment. Under stress, he traced the floral design on our rug or paced as if he were trying to figure something out. At the beach, he pitched his forehead into the sand, scooping up wet handfuls to dribble them on either side of his temples. In the grocery store, he’d burst out crying for no apparent reason.Spooked Into Action
Leo’s diagnosis also had a profound impact on me. It spooked me into action.
The science of early human development tells us that the brain has breathtaking plasticity during the first three years of life. I was in a race against time to set him on a developmental path that would lead to independent living. The urgency to help him was almost primal.
I abandoned my writing career to manage an early intervention program that Yale and Leo’s special education teachers recommended. At its height, Leo’s program consisted of up to 35 hours a week of seven different therapies, and I was always on the lookout for anything else that might help him.
We settled on those with the most scientifically proven strengths. They included an approach to behavior modification that didn’t include repetitive instruction, a form of play therapy, social skills groups, occupational therapy and speech therapy. We tried but stopped several alternative therapies: music therapy and auditory integration therapy, which supposedly re-teaches the ear to listen, and neurofeedback, which supposedly retrains the brain to focus more.
It was an incredible juggling act as I struggled to prioritize treatments that experts recommended. I also fretted about ignoring Leo’s older brother while engaging in battles with the D.C. school system and my health insurer over payment for his special education and therapies and monitoring his progress to adjust the program as he progressed. I led this life for four years, while my husband paid the family bills.
Seven years after the initial diagnosis, Leo has achieved significant gains in areas thought to be unattainable by even high-functioning children with autism spectrum disorders.
He attends a regular school and is socially engaged, articulate, creative and performing at grade level with a tutor for reading and handwriting. He understands and can express complex and abstract thoughts. He can empathize. And he has friends he cares about and who care about him.
I won’t say that all the traits that led to Leo’s diagnosis have disappeared. But the ones that remain are not unique to children with autism spectrum disorders.
For all his achievements, he is a spirited little boy with hair-trigger emotions that can overtake him when he cannot bend the world to his will. His behavior is sometimes compulsive. In Freudian terms, he is all id.
As for me, I became the socially isolated person I worked so hard to keep Leo from becoming. My social network disintegrated in the years that I immersed myself in Leo’s recovery.The Jury Is Still Out
Fein and her team in Hartford will either validate my belief that Leo has moved off the autism spectrum or tell me he is still on it. We’re waiting to hear.
Their testing over two days was comprehensive. An examiner evaluated Leo’s IQ, language and social skills, and his behavior and interests. She asked him questions such as “What is footwear?” and “What does ‘find fault’ mean?” Leo said, footwear “is something you put on your feet to keep them from getting dirty.” He said “find fault” is a “way of saying that you are not the person who, for example, broke your mom’s favorite vase.”
To test his reasoning skills, he had to solve mathematical games such as the Tower of Hanoi puzzle, moving a stack of disks from one rod to another without putting a larger disk on top of a smaller one.
The brain scans that I found so mesmerizing were intended to give researchers more understanding about how his brain behaves by showing which regions lighted up when he responded to certain statements. Some were designed to evoke a visual image (”The letter ‘J’ looks like an umbrella handle”); others either stated, or misstated, facts (”Elephants can breathe underwater”).
I answered hours of questions focused on Leo’s ability to make and keep friends. I said Leo had friends, even a best friend, and asked for play dates without prodding from me. That’s key: While many children with autism spectrum disorders have friends, according to Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center, they don’t seek out peer relationships. “Having an aunt or a music teacher as a friend doesn’t count,” she said.
Hope for Parents
Researchers today credit earlier diagnosis and treatment for creating more positive outcomes like my son’s, but early intervention isn’t the whole story.
In 1980, when autism was added to the Diagnostic and Statistical Manual of Mental Health Disorders (DSM), the bible for psychiatric disorders, the diagnosis focused on mental retardation. Studies showed that up to two-thirds required residential care or hospitalization in adulthood. About 2 percent achieved moderate to high levels of independence and had some friends but worked menial jobs in factories and office buildings.
In 1994, the fourth revision of the DSM broadened the criteria for autism to include individuals who were more cognitively able. Since then, not surprisingly, studies have shown rosier outcomes for more children.
In 2007, Wendy Stone, a professor of pediatrics and psychology at Vanderbilt University, compared her own study of a group of children age 2 to 4 who had been given an autism diagnosis with the results of similar studies. Children received various types and amounts of intervention. But the number of therapy hours they received did not predict their outcome. What did? Age at diagnosis, symptom severity and cognitive skills.
“I don’t know that the children ‘recovered,’ though they did improve . . . to the extent that they no longer met the diagnostic criteria,” Stone said. “Almost all continued to have some form of developmental disorder.”
“I think the most hopeful message we need to give parents,” said Geraldine Dawson, chief science officer of the nonprofit group Autism Speaks, “is that all children with autism are capable of learning and developing new skills with the help of early intervention.”
And that’s just what my now affectionate and fun-loving son, Leo, has done, whatever the results of the Hartford testing ultimately show.