Home Autism Detector Worries Some Doctors
A Device Designed to Detect Autism in Toddlers' Chatter Has Some Doctors Concerned
By LAUREN COX
ABC News Medical Unit
Sept. 22, 2009—
A new device marketed to parents as an early detection device for autism has specialists debating whether the technology will become a powerful autism screening tool for doctors, or a do-it-yourself recipe for parental anxiety.
For around $200 dollars, parents can now order a LENA Language and Autism Screen (LAS) designed to detect early signs of autism in their toddlers' daily chatter at home.
The LAS device -- an iPod sized recorder that fits into specially designed overalls -- was designed after five years of research by the non-profit LENA foundation that is seeking to "develop advanced technology for the early screening, diagnosis, research, and treatment of language delays and disorders in children and adults," according to their Web site.
To use LAS, parents simply let their 24-month to 48-month-old children wear the device and overalls for a full 12-hour day. Then parents can ship the device back to LENA where employees use their acoustic algorithms to compare the child's vocalizations to those of other children analyzed in the LENA database. Parents then get an assessment in the mail.
"It's not a diagnosis, it's a detection. We wouldn't recommend someone use this screen as a diagnosis," said Mia Moe, director of communications at the LENA Foundation. "You really need to bring this information to a professional."
To get a child diagnosed with autism, parents typically get a referral from a pediatrician or school, and then see a specialist for a lengthy diagnostic interview. The diagnostic tests can take hours, and parents report waiting weeks or even several months for an appointment with specialists. After a diagnosis, they then face a slew of products marketed to help the mysterious disorder.
"As a parent there are a lot of products coming out at us all days," said Marguerite Kirst Colston, the vice president for constituent relations at the Autism Society and mother of a 9-year-old boy with autism. "Perhaps it could be a good additive, but as a screening tool – as a parent, I paused."
Moe said the idea to adapt the LENA technology to the general public came from two members of LENA's scientific advisory board who were parents of children with autism. The board members thought the LENA research could be applied to autism screening.
"Parents typically know there's something going on," said Moe. "But most regular visits with the pediatricians are 8-15 minutes at the most."
The goal, Moe said was to help parents screen their children and get a diagnosis earlier.
Experts Want to Diagnose Autism Earlier, But Still Get it Right
The average age to be diagnosed with autism is about 5 years old, however, a diagnosis of autism at age of 2 "can be reliable, valid, and stable," according to the U.S. Centers for Disease Control.
But children with autism may also be misdiagnosed with speech problems or behavioral problems before receiving an autism diagnosis, which can delay the treatment process by years, researchers say.
"I think something like this is intriguing -- language is the reason for why a majority of children are referred to specialists for autism," said Dr. Chet Johnson, professor and chair of pediatrics at the University of Kansas School of Medicine. "I think the other thing that's driving this is that for the children we are diagnosing -- we sure wish it happened sooner."
Johnson said that time is of the essence when diagnosing autism since the benefits of treatment diminish the older the child is diagnosed.
"It's different than a lot of other disabilities. In autism, time really does make a difference in the interventions," said Johnson.
"Once this technology becomes available to parents I don't think there's any use in criticizing them," Johnson added.
But while many autism specialists around the country were excited by the LENA technology, many also feared the consequences of putting early screening tools into the hands of parents.
Should Only Doctors Screen for Autism?
Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center (UMACC), said she appreciated LENA's work as a research tool, but not as screening for the general public.
"I am familiar with LENA and we (UMACC) are getting ready to use it in a research project in order to measure changes in children's and parents' behavior in response to an intervention program for toddlers with autism," said Lord. "I think LENA has the potential for being very helpful for researchers and perhaps in the measurement of progress but I'd be very careful about proposing it as an autism detector."
While Lord uses LENA in research, she said not all children who have early speech problems are autistic and moreover, signs of autism appear not only in the words the child speaks, but what communication the child is able to absorb.
"I would hate to distract families from the idea that what their child understands is something to attend to by focusing only on vocal production," said Lord.
Diagnosing Autism From a Parent's Point of View
Nine years ago, Shelly Galli got an early diagnosis for her daughter Camille, now 11, because she noticed a difference in attention, not spoken words.
"If you look at my daughter, who was diagnosed at 2, she hardly spoke at all," said Camille, who noticed Camille was regressing by 18 months.
"What I lost from her was the focus, the attention," said Galli.
Dr. Susan Anderson, director of the Autism Clinic at the University of Virginia Children's Hospital, said that specialists are looking at communication, not just spoken words during a professional autism screening.
"Autism is not only a disorder of verbal communication (which is both delayed and disordered) but is also a disorder of non-verbal communication, a disorder of social development (including play skills) and interactional skills, and a disorder which includes atypical behaviors," said Anderson. "Any means of screening for autism needs to include all of these measures."
While Galli doubts she would have spent the money on LAS when she was concerned about her daughter, she thought it had potential for parents of children with autism to track the child's progress, or for parents concerned with a true speech disorder.
"To buy a machine for that much if you want to see if your child has any speech problem, spending that much would be reasonable, but it would have to be with a doctor," said Galli. "This should not be an infomercial."
Galli also feared parents of children with autism may react poorly to the mailed results from LAS.
"A lot of parents really go crazy; they will get back a report about their child's autism and go nuts. It's with good reason," said Galli, who fields calls from concerned parents as part of her work with Autism Speaks
The Emotional Strain of an Autism Diagnosis
"There's some kind of liability, there's the possibility that there's going to be some sort of diagnosis. So why not get the pediatrician involved?" said Galli.
Some specialists, who were still excited about LENA's technology, also had the same thought.
"People come to us suspecting the diagnosis of autism, but when you confirm it clinically people do fall apart, they begin to cry, so you do need the guidance," said Dr. Antonio Y. Hardan, director of the Autism and Developmental Disabilities Clinic at Stanford University.
"Not all parents are emotionally able to handle the results of diagnosis," Hardan went on. "It's not that such a concept cannot be done, but it's something we have to be careful of, it's like genetic counseling."
"But, it's an interesting device. It is a promising for diagnosis and screening, but also in terms of therapy."
As for the LENA, Moe said the foundation was hoping specialists would appreciate the system as well and use it in research.
"We developed it for parents, for clinicians, for pediatricians, for researchers," said Moe.