By Catherine H. Knott, Ph.D.
An Interview with School Psychologist Kriste Simmons
How are children diagnosed with an autism spectrum disorder? This question has become more urgent as the number of children diagnosed with spectrum disorders ranging from Asperger's syndrome to severe autism has risen dramatically.
School psychologists and special education teachers are increasingly aware of autism. Many teachers work with children in the school system who would benefit from a correct identification of their condition. Kriste Simmons, who has worked as a school psychologist in Alaska for seven years, recently attended a two-day intensive training in New York City, where she learned how to use a new tool, the Autism Diagnostic Observation Scale (ADOS).
The ADOS instrument itself was originally used for research by the Western Psychology Association. While studying autism, the researchers wanted to distinguish reliably between autism and hyperactivity or other conditions, and developed this diagnostic tool for people of all ages. Now these tests are regularly used in clinical settings.
Participants in the training received the manual on ADOS, and watched videos showing different people giving the test to different children. "I was surprised when they said we would also have live demonstrations, one each day," said Kriste. "But then I realized that if anyone would react all right in those circumstances, it would be an autistic child, because he or she would not be as interested in people."
In fact, her prediction proved true for the demonstrations she watched. Both children tested were 7 or 8 years old. "The autistic child could not have cared less whether we were there. But the child who was not autistic complained to the audience, grabbed the microphone, and talked loudly."
Kriste recommends that parents consider requesting this test, as well as an in-depth interview to determine how early any condition that seems to be an autism spectrum disorder may have started. She recommends that teachers and psychologists familiarize themselves with the test and also interview the parents, so that they can help eligible children get access to services as early as possible, which gives them the best chance for success in school and socially.
About the Test for Autism Indicators
The Autism Diagnostic Observation Scale is a semi-structured standard test, given to those who have been referred because of possible autism. Criteria used match those from the DSM manuals. The tester plays with the children, evaluating their responses to the materials presented and to the tester as play occurs.
Kriste described one part of the test that uses puzzles. "You have the puzzle in front of you and the child, but you don't give them all the pieces. Instead you wait to see what they do to get the other pieces. Do they use social cues and communication? Do they ask? Do they use their hands? Some actually would reach over the top to try to get the other pieces. Others might just stare at what they want, but not get what they need."
Throughout the process, the tester looks at three main aspects of the child's behavior: 1) social awareness; 2) social communication; and 3) repetitive behavior.
During another task used during the test, Kriste said, "The tester pulls out a bunch of standardized toys (everyone uses the same toys). The tester hands the child one, for example the superhero, or the doll, or the pet dinosaur, and watches their responses. The tester pays attention to whether the child engages socially during play. For example, does the child laugh at having the pet dinosaur? The tester will also try to engage the child with the toy, or doll, for instance, and tell a story about it."
One of the students in the live demonstrations - the student with Asperger's - showed absolutely no interest in the doll, but chose the shiny metal disk that could spin. "He sat and spun the disk and stared at it - the tester couldn't get him to do anything else," said Kriste. When the tester looks at whether the student can tell a story in this situation, he or she watches how the student communicates. Do they use gesture? Can they pantomime?
At the end of this semi-structured test, the tester will look for certain criteria - for example, imagination and creativity, and assign a rating for the degree to which creative inventiveness is present. The score is given as a range, from 0 - 3, with "0" showing high levels of a particular behavior and "3" meaning there is little to no creativity, either through action or talk.
The test, therefore, uses a higher numerical score to indicate more likely presence of Asperger's or other autism spectrum disorders. The behaviors and criteria that the testers use meet the DSM criteria for autism spectrum disorders, so professionals (while they know the test is not strictly a diagnosis) can confidently use the test to establish indicators of autism spectrum disorders.
Evaluating Language and Communication Patterns
Because language and communication patterns are such important indicators for autism spectrum disorders, and because they are among the most problematic areas for children with autism spectrum disorders, both in school and in social settings outside school, Kriste gave these categories special emphasis in our interview.
Kriste stressed the importance of the ADOS test to assess language and communication patterns because it uses appropriate codings for 10 different types of language and communication habits indicative of Asperger's or other autism spectrum disorders. These codings include: reciprocal and social communication, language production, shared enjoyment, reciprocal social interaction, imagination, stereotyped behaviors, and unusual sensory focus (for example, a child who tries to smell everything).
A strong focus on language and communication can also elicit other indicators, such as the habitual patterns of children who communicate less appropriately. Kriste gave the following example: "There are kids who want to talk all the time - and all their conversations lead back to the same topic, for example, Blues Brothers, subway maps, or other mono topic 'restricted interest' areas." These children are not using communication for a give-and-take interaction with other people; instead, they use it to spill over some of the intense energy and interest they have for a particular topic - a hallmark of Asperger's.
Other behaviors that may accompany autism spectrum disorders include hyperactivity, tantrums, and unusual anxiety. While these fall outside the typical boundaries of language and communication patterns, it helps the tester to observe the child's communication during episodes of these behaviors to understand whether there are specific causes outside an autism spectrum disorder.
The Classification System and Next Steps
Kriste emphasized the usefulness of the training for school personnel such as school psychologists and special education teachers, even though it does not qualify these professionals to make diagnoses. "We do not make a diagnosis," she said, "but I can classify as autistic, or autistic spectrum, a child who matches the criteria in the test."
The test also helps weed out children who present some behaviors typical of autism spectrum disorder, but really fall outside of the disorder, such as children who are merely hyperactive or exceedingly stubborn. Using the ADOS test would ensure that such children were not incorrectly classified as having an autism spectrum disorder.
Classification with an autism spectrum disorder can help a student to get an Individualized Education Plan, which in turn helps the student receive more appropriate classroom instruction. Whether or not a student has an IEP, classification helps teachers and parents understand that this student has different needs. Even high-functioning students with Asperger's syndrome will benefit from the additional understanding that teachers gain about their condition.
Kriste may recommend speech and language pathologists for an identified child, and work on pragmatic social abilities. Kriste uses social stories to help children with autism spectrum disorders know what to expect with upcoming activities such as field trips. She also offers social skills training for higher functioning kids to help them make friends more easily.
"The TEACCH method is what we are using in our district for lower functioning kids. The idea is that it makes the unknown known. These kids love rules and may need visuals to communicate what is inside them, but they don't have the words to express themselves. They learn to use a picture system of communicating. The goal for everyone is to be integrated into the regular environment or least restricted environment, but some people have to be in a classroom just for them. Some of the 3rd-6th graders have teacher aids with them but are in the regular classroom at least several hours a day." It all depends on the IEP and whether it is better for the student to receive individual instruction or instruction in the classroom.
Kriste strongly recommends using the assessment tools for all children who may benefit from individualized education. "There is definitely still a stigma surrounding having an IEP for their child. I hear it all the time from parents. They will say, 'I don't want Special Education Services for my child because he isn't retarded,' or 'I had Special Ed as a child and we were kept in the basement.' Fortunately, things have progressed since then. The parents have full rights. Having an assessment is only part of it, but at least it gives us information. Placing a child in Special Education gives us options, but the parent has to agree to it. Parents can call a meeting any time they want to give or get information."
Kriste recommends that at least initially, parents should go ahead with the assessment to gather more information, but she stresses that the parents will not have committed to anything beyond assessment at that point.
Finally, Kriste shares a true story to help parents remember why testing and open discussion about autism can be in the best interests of the child:
"There's a child whose mom refers to her son as the devil child. We finally convinced her to have him looked at by three people. He was not speaking, screamed to communicate, and he used to spin circles over and over. As school personnel, we were so reluctant to say the word autism, we didn't even use the word around her because she was so protective.
"Finally, the mom said, 'You know, I was doing some research online and I think my son is autistic.' It's too bad that parents are reluctant to have their children labeled, and that we didn't speak up - we could have saved months and months of time if we had all felt free to talk openly, because the school personnel were ready to help this child. And early intervention can really make a crucial difference for kids with autism spectrum disorders."
Favorite Resources for Parents
Kriste encourages parents not to feel that their children are limited by an autism spectrum disorder. "These days, when we have kids with Asperger's at school, the idea is that some of these kids will end up being Harvard professors, and will be functioning well in society. Diagnosis is not the end of the road. Lower functioning kids can be capable members of society as well. There are jobs that match their skills and interests."
Kriste adds, "Michelle Garcia has written incredible books to help in the schools, such as her book about what is the difference between a friend and an acquaintance. I use that book as a starting point for working on social skills, and I preface it with something we've rehearsed ahead of time."
Kriste also recommends Tony Attwood's books and website, and using any resources available at the state libraries.
Kriste's recommendations for parents are listed in the bibliography.
Attwood, Tony. 2007. The Complete Guide to Asperger's Syndrome. London: Jessica Kingsley Publishers.
Grandin, Temple. 2006. Thinking in Pictures, Expanded Edition. New York: Vintage Books.
Robison, John Elder. 2007. Look Me in the Eye: My Life with Asperger's. New York: Crown Publishers.
Winner, Michelle Garcia. 2007. Thinking About You, Thinking About Me. London: Jessica Kingsley Publishers. Michelle Garcia Winner has written many educational books for use with children with autism spectrum disorders.