The findings, which appear in the NCHS Data Brief, highlight areas where there is room for improvement, including earlier diagnosis ofautism spectrum disorder and access to behavioral therapies and other services. The new study looked at children aged 6 to 17 with special health care needs and autism spectrum disorder in 2011.
More than half of school-aged kids were age 5 or older when they were first diagnosed with autism spectrum disorder, the study showed. Less than 20% were diagnosed by age 2. The American Academy of Pediatrics recommends that pediatricians screen children for autism at 18 months of age.
The CDC estimates that 1 in 88 children in the U.S. has an autism spectrum disorder. This is the umbrella term for a group of developmental disorders that can range from mild to severe and that often affect social and communication skills. Treatment is individualized, and often involves behavioral therapies to address developmental delays along with medication.
Earlier Diagnosis of Autism Is Possible
Of the children in the study, about 9 of 10 received one or more therapies. Most commonly these included speech or language therapy and/or social skills training. More than half of these kids took at least one psychiatric medication, including stimulants, anti-anxiety drugs, or antidepressants.
"Our data indicate that many children with autism -- the majority -- are getting some sort of services such as speech or other individual-based interventions," says researcher Lisa J. Colpe, PhD, MPH, of the National Institute of Mental Health in Bethesda, Md. "That is great news."
Outside experts say there are still many gaps in the diagnosis and treatment of autism spectrum disorder among school-aged kids in the U.S.
"Research tells us that children who start intervention earlier do better in the long run," says Geraldine Dawson, PhD, in an email. She is the chief science officer at Autism Speaks. "We can reliably diagnosis autism by 24 months, so professionals need to do a better job, including screening all children at 18 and 24 months."
Data Highlight Gaps in Autism Treatment
In the study, 12% of kids with autism spectrum disorder didn't receive any of the suggested services. Less than half received the kind of behavioral therapies that are believed to be most helpful.
"There are many reasons children with autism are not receiving the interventions they need, including lack of insurance coverage and inadequate numbers of trained professionals," Dawson says. "It is critical that we address the barriers that are preventing children from receiving early intervention. "
Daniel L. Coury, MD, agrees. He is a professor of clinical pediatrics and psychiatry at Ohio State University and Nationwide Children's Hospital in Columbus, Ohio. He says that doctors need to do a better job of identifying autism earlier and getting these children into services at younger ages.
"If we can get more physicians to do that, it would be a start," he says. This is not going to pick up every child, as those more mildly affected may not be identified until their school years.
Amy Keefer, PhD, is a clinical psychologist in the Kennedy Krieger Institute's Center for Autism and Related Disorders in Baltimore, Md. She says that parents need to advocate for their children.
"Be involved with practitioners who are experts in autism at the first concern, and if a diagnosis isn't given, ongoing monitoring, assessment, and checking in can help guide parents through the developmental stages," she says.
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogsover at AutismWonderland.
Norrin was diagnosed with autism when he was 2 years 5 months old – right around the age most kidsstart potty training. But at the time Norrin was diagnosed, he couldn’t even point his finger.
Or clap his hands.
Or wave hello/goodbye.
Or speak.
While potty training should have been at the bottom of the list of things I wanted Norrin to learn, there was this desire to be like a typical parent – for him to be a typical kid. And I wanted to start potty training Norrin at the age the other parents did. So a few months after the
therapists
started working with Norrin – we started.
And then we stopped. Because potty training a kid who couldn’t speak or have the motor coordination to clap, point, wave can be…difficult (among other things).
I realized that with everything else, I needed to take potty training step by step. So if you’re thinking of potty training your kid with autism – here are some things to keep in mind:
1. Ignore what the other kids/parents are doing. Parents of typical kids love to talk about potty training – how they did it and how long it took them. I remember talking to one mom who expressed her frustration with the process because it took a whole two weeks. And I felt like a failure because we had been working on potty training for months (with little success). I couldn’t think about other kids. I had to concentrate on mine.
2. Start when your child is ready. Aside from being emotionally ready, they need to be physically ready. One of the things our Applied Behavior Analysis (ABA) therapist stressed was Norrin learning how to to pull down his pants and underwear. Think about all the physical movement required to use the bathroom especially for boys. Potty training requires a certain amount of independence and if a child cannot remove his undergarments to go to the bathroom then it may be best to hold off until they can.
3. Everyone needs to be on board. When we started potty training Norrin, we started at home. We communicated with his teachers about potty training and asked for tips. We used to send Norrin to school wearing underwear with a Pull-Up underneath. Once he got to school – the Pull-Up was removed and his teachers took him to the bathroom throughout the day. Pull-Ups that have side openings worked best for potty training as it allowed teachers to remove it without removing all the clothing. It was a collaborative effort.
4. You need to be consistent. Once you determine your child is ready. Once you get everyone on board – teachers, sitters, grandparents – whoever. You need to be consistent. So even when you’re out and about on the weekends, even if your child has a Pull-Up on (just in case), take them to the bathroom – get them accustomed to public restrooms.
5. Be patient. It took us more than two years to potty train Norrin. Don’t think potty training will take a week, two weeks, or a month. Do not put your child (or yourself) on a deadline. Start when you start and finish when you finish.
6. Have a sense of humor. Potty training is messy business (so be sure to stock up on paper towelsand cleaning wipes). Accept it. Laugh it off whenever possible. Though I know, sometimes it can be hard. If you want to laugh at one of our potty training adventures, check out this post - Norrin and the Royal Flushing Privies.
Norrin is 7-years-old. He’s fully potty trained during the day. Yes he still needs help (with buttons and zippers and cleaning), and he still needs prompting (washing hands). Night time potty training is a whole other ball game. We’re not even trying. And I’m not going stress about it, because I’m sure Norrin will get it. In his own time.
If you’d like a resource book on potty training special needs kids, Toilet Training for Individuals with Autism or Other Developmental Issues was really helpful
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