Benay Josselsons 7 1/2-year-old son, whom she describes as high-functioning on the autistic spectrum, is allowed to take breaks during class and, in certain classes, to use so-called fidget toys to help him focus. But in other classes at the Rockland County, New York, Jewish day school, teachers who find the "fidgets" distracting don't permit them.
Its hard to advocate a lot of times for your kid, said Josselson, 36, an associate at a New York law firm who asked that her son not be named. You can feel alone. You dont want to ruffle feathers, but at the same time you are the only one who is going to do that.
The second-graders fidgets include a brush that he runs across his arms, a squishy frog that he calls ribbit, and rearrangeable blocks.
We call them toys, but theyre not really toys, Josselson said. The purpose is to get the sensory input that he needs, so he can feel calmer and regulate. He can pay attention to the lesson while he is doing that even though it may look like hes busy doing something else. Hes actually listening more.
Josselson doesn't think her sons teachers are unsympathetic. One teacher who only allows the fidgets on breaks offered to affix Velcro beneath his desk so he can touch it during class. But negotiating for a childs needs with teachers and school administrators can be the Wild West. And the context surrounding those tug-of-wars appears to be increasingly common, according to data from the U.S. Centers for Disease Control and Prevention.
In an 18-month period in 2003 and 2004, 7.8 percent of U.S. children were diagnosed with Attention Deficit Hyperactivity Disorder, according to CDC data. In that same span in 2007-08, that percentage had climbed to 9.5, and it increased even more to 11 percent in 2011-12, the most recent span the CDC has studied. With such a sizeable ratio of school-age children struggling with paying attention in class, Josselson and her son are far from alone.
Broader context
CDC researchers have seen the same trend since they started collecting ADHD data in 1997.
Throughout that time period, weve seen an increase of about 3 to 5 percent per year in the rate of diagnosis of ADHD among the school-age population of children 4 to 17 years of age, said Susanna Visser, the CDCs lead epidemiologist of child development studies.
The percentage of students between the ages of 4 and 17 who meet the criteria for ADHD diagnosis is roughly consistent: about one-tenth of the population. But that means that some children are being overdiagnosed and overmedicated: "We are concerned about inappropriate treatment, Visser said.
For children who meet criteria, the American Academy of Pediatrics and the American Academy of Child and Adolescent Psychiatry recommend behavioral therapy and medication. But in rural communities, physicians often dont have access to psychological services.
Medication is very, very effective, and it can really have important improvements for symptoms immediately. Within an hour, you can notice differences in a childs behavior," Visser said. "But its not the right choice for everyone, and particularly for the youngest children.
Avoiding pseudo-medical "voodoo"
With the proliferation of unreliable medical websites, parents need to differentiate between voodoo and real science, warns Dr. Adiaha Spinks-Franklin, a developmental behavioral pediatrician at Houston's Texas Childrens Hospital who studies health care disparities among autistic children.
You used to be able to separate the snake oil from the real interventions, but now those producing the snake oil are a lot more sophisticated in how theyre portraying their products, Franklin said.
Franklin advises parents to first consult with medical providers and reliable website such as WebMD and the CDC to understand their child's diagnosis. Then, they should clarify how the recommended course of action will work.
Parents who dont follow those steps may be drawn, for example, to dietary recommendations, suggestions to remove certain dyes from food, or to bouncy balls for their children to sit on, none of which respond to actual factors affecting the brains neuro-structure, Franklin said.
Fidgets, to Franklin, are part of the voodoo category.
People are going off anecdotal evidence, she said. I worry that they are going to be a distraction in the classroom.
Although many occupational therapists recommend fidgets, Franklin knows only of a little bit of emerging evidence that suggests they may help college-age people. There are, she says, no conclusive studies about children.
That parents child is not the only child in the class, she said. If (the fidget) actually hinders the education of other children in the classroom, thats not something the school is necessarily going to go along with.
The teachers perspective
Parents, teachers and administrators value the child's best interests, but the path to those interests can be murky, said Jessica Paa, who teaches fifth grade at a San Francisco charter school. It is often difficult to mesh everyones ideas not to mention what the child actually wants.
Administrators asked Paa to take hourly notes on the behavior of one 11-year-old student with "extreme behavior problems" including cursing and getting physical with other students and to share those updates with the parent.
The plan took too much time and was ineffective, she said: I would have preferred to handle the situation myself, as the students parent was uninvolved, and my daily calls did not alter behavior in the slightest.
Another time, Paa was asked to seat a student who had ADHD and anxiety in the center of the front row in class. The student swayed constantly and was permitted to stand during lessons, which distracted classmates. Paa had to meet with the parents before moving the student to a side seat.
Paas advice for parents who believe a teacher or administrator is proposing the wrong plan of action is to set up meetings and secure detailed explanations of the plan: School may be different from when they were kids, she said.
And, Paa says, parents can request weekly email updates from a teacher, but they should give the plan a fighting chance: Usually there is an initial rough patch when implementing something new, so give a plan a few weeks, she said.
A cultural sea change
Even if tug-of-wars may persist on the ground, experts agree that attitudes toward ADHD and special needs more broadly are much more respectful and understanding than they once were. Franklin notes that some 50 years ago those with ADHD symptoms were just said to "be boys."
Today, the neurobiology is much better understood.
But decisions about what to do about the challenges can lag behind: The ability to implement that intervention may not keep up with the pace of the science, Franklin said.
Josselson has noticed vast differences between resources at the day school where her son studies and the much richer facilities at the public school he used to attend: There was less advocacy on my part as a parent, because so much was done before it reached me. I was spoiled as a parent, she said of the public school.
She and her husband moved their son to the day school in order to keep him in smaller classes.
There is no special ed co-teacher model or anything like that, but its a small enough environment, she said. Its not perfect by any means, but for us it was the better choice, plus it gave us the religious aspect.
Its hard to advocate a lot of times for your kid, said Josselson, 36, an associate at a New York law firm who asked that her son not be named. You can feel alone. You dont want to ruffle feathers, but at the same time you are the only one who is going to do that.
The second-graders fidgets include a brush that he runs across his arms, a squishy frog that he calls ribbit, and rearrangeable blocks.
We call them toys, but theyre not really toys, Josselson said. The purpose is to get the sensory input that he needs, so he can feel calmer and regulate. He can pay attention to the lesson while he is doing that even though it may look like hes busy doing something else. Hes actually listening more.
Josselson doesn't think her sons teachers are unsympathetic. One teacher who only allows the fidgets on breaks offered to affix Velcro beneath his desk so he can touch it during class. But negotiating for a childs needs with teachers and school administrators can be the Wild West. And the context surrounding those tug-of-wars appears to be increasingly common, according to data from the U.S. Centers for Disease Control and Prevention.
In an 18-month period in 2003 and 2004, 7.8 percent of U.S. children were diagnosed with Attention Deficit Hyperactivity Disorder, according to CDC data. In that same span in 2007-08, that percentage had climbed to 9.5, and it increased even more to 11 percent in 2011-12, the most recent span the CDC has studied. With such a sizeable ratio of school-age children struggling with paying attention in class, Josselson and her son are far from alone.
Broader context
CDC researchers have seen the same trend since they started collecting ADHD data in 1997.
Throughout that time period, weve seen an increase of about 3 to 5 percent per year in the rate of diagnosis of ADHD among the school-age population of children 4 to 17 years of age, said Susanna Visser, the CDCs lead epidemiologist of child development studies.
The percentage of students between the ages of 4 and 17 who meet the criteria for ADHD diagnosis is roughly consistent: about one-tenth of the population. But that means that some children are being overdiagnosed and overmedicated: "We are concerned about inappropriate treatment, Visser said.
For children who meet criteria, the American Academy of Pediatrics and the American Academy of Child and Adolescent Psychiatry recommend behavioral therapy and medication. But in rural communities, physicians often dont have access to psychological services.
Medication is very, very effective, and it can really have important improvements for symptoms immediately. Within an hour, you can notice differences in a childs behavior," Visser said. "But its not the right choice for everyone, and particularly for the youngest children.
Avoiding pseudo-medical "voodoo"
With the proliferation of unreliable medical websites, parents need to differentiate between voodoo and real science, warns Dr. Adiaha Spinks-Franklin, a developmental behavioral pediatrician at Houston's Texas Childrens Hospital who studies health care disparities among autistic children.
You used to be able to separate the snake oil from the real interventions, but now those producing the snake oil are a lot more sophisticated in how theyre portraying their products, Franklin said.
Franklin advises parents to first consult with medical providers and reliable website such as WebMD and the CDC to understand their child's diagnosis. Then, they should clarify how the recommended course of action will work.
Parents who dont follow those steps may be drawn, for example, to dietary recommendations, suggestions to remove certain dyes from food, or to bouncy balls for their children to sit on, none of which respond to actual factors affecting the brains neuro-structure, Franklin said.
Fidgets, to Franklin, are part of the voodoo category.
People are going off anecdotal evidence, she said. I worry that they are going to be a distraction in the classroom.
Although many occupational therapists recommend fidgets, Franklin knows only of a little bit of emerging evidence that suggests they may help college-age people. There are, she says, no conclusive studies about children.
That parents child is not the only child in the class, she said. If (the fidget) actually hinders the education of other children in the classroom, thats not something the school is necessarily going to go along with.
The teachers perspective
Parents, teachers and administrators value the child's best interests, but the path to those interests can be murky, said Jessica Paa, who teaches fifth grade at a San Francisco charter school. It is often difficult to mesh everyones ideas not to mention what the child actually wants.
Administrators asked Paa to take hourly notes on the behavior of one 11-year-old student with "extreme behavior problems" including cursing and getting physical with other students and to share those updates with the parent.
The plan took too much time and was ineffective, she said: I would have preferred to handle the situation myself, as the students parent was uninvolved, and my daily calls did not alter behavior in the slightest.
Another time, Paa was asked to seat a student who had ADHD and anxiety in the center of the front row in class. The student swayed constantly and was permitted to stand during lessons, which distracted classmates. Paa had to meet with the parents before moving the student to a side seat.
Paas advice for parents who believe a teacher or administrator is proposing the wrong plan of action is to set up meetings and secure detailed explanations of the plan: School may be different from when they were kids, she said.
And, Paa says, parents can request weekly email updates from a teacher, but they should give the plan a fighting chance: Usually there is an initial rough patch when implementing something new, so give a plan a few weeks, she said.
A cultural sea change
Even if tug-of-wars may persist on the ground, experts agree that attitudes toward ADHD and special needs more broadly are much more respectful and understanding than they once were. Franklin notes that some 50 years ago those with ADHD symptoms were just said to "be boys."
Today, the neurobiology is much better understood.
But decisions about what to do about the challenges can lag behind: The ability to implement that intervention may not keep up with the pace of the science, Franklin said.
Josselson has noticed vast differences between resources at the day school where her son studies and the much richer facilities at the public school he used to attend: There was less advocacy on my part as a parent, because so much was done before it reached me. I was spoiled as a parent, she said of the public school.
She and her husband moved their son to the day school in order to keep him in smaller classes.
There is no special ed co-teacher model or anything like that, but its a small enough environment, she said. Its not perfect by any means, but for us it was the better choice, plus it gave us the religious aspect.
