Fall 2009
Unscrambling Autism

synapse: University of Nevada, Reno School of Medicine

Blocks spelling autism

Photo by Dave Smith, Art direction by Edgar Antonio Nunez.

Diagnosing the Disorder

Story by Anne McMillin, APR

The idea for the University Center for Autism and Neurodevelopment Assessment Team, or UCAN, grew out of the Nevada Autism Summit of 2005 when professionals and parents of autistic children gathered to make recommendations on how best to address the issue of diagnosing the range of autism disorders and subsequent intervention services.

A group of professionals decided to implement recommendations by the National Institutes of Health that no one professional discipline possesses the entire skill set necessary to come to an accurate diagnosis. Pulling together expertise across medical and behavioral disciplines gave team members the opportunity to learn from each other and view the assessed children from different perspectives.

Since other disorders can often present as autism to the untrained eye, the team’s multi-disciplinary approach rules out other conditions to get to the true diagnosis. When those professional opinions are combined, a more complete diagnosis emerges for the benefit of the patient.

“We decided to approach assessment from a transdisciplinary aspect due to the complicated nature of the diagnosing process, as there are no medical or genetic tests for autism,” said Debra Vigil, Ph.D., director of the team and associate professor in the Department of Speech Pathology and Audiology.

“Our goal is to provide comprehensive and diagnostic evaluation for children who may have autism or other neurodevelopmental disabilities.”

What started as a grassroots effort between a few interested and enthusiastic professionals quickly grew into a team of nearly two dozen community members gathering monthly to perform autism assessments for children by 2006.

Participating volunteer agencies include the University of Nevada, Reno Center for Excellence in Developmental Disabilities Nevada Early Intervention Services; Washoe County School District; Northern Nevada Child and Adolescent Services; and the School of Medicine’s speech pathology and audiology, and psychiatry departments.

As word gets out among area professionals, requests to participate keep coming in to the speech pathology and audiology department and the team continues to grow.

Currently there are three autism assessment teams doing multidiscipline, diagnostic appraisals for children in northern Nevada.

Vigil credits Henry Watanabe, M.D., a board certified child and adolescent psychiatrist with the psychiatry and behavioral sciences department, with enthusiastically recruiting many of the community professionals and participating agencies from across northern Nevada.

“The uniqueness of this approach is in the professional volunteers,” said Vigil. “Professionals are eager to participate because we are learning from each other across disciplines.”

Lynn Kinman, M.D., a developmental pediatrician and medical director at Nevada Early Intervention Services, joined the assessment team a year ago and sees great value in its work.

“There is a wealth of knowledge to be gained from the quality of the professionals on this team. It is a wonderful opportunity to be among professional peers with expertise in autism,” she said.

Even after diagnosing autism for the past 11 years, Kinman said she is better at her diagnoses having served on the team and is constantly learning different perspectives from the intellectual stimulation generated by the team’s professionals.

“I consider this team approach as the gold standard and am proud to have been asked to be a part of it,” she said.

At a minimum, the assessment team consists of a child psychiatrist, school or child psychologist, an occupational therapist, a speech language pathologist, and a developmental specialist. Additional team members from the Washoe County School District or Child Behavioral Services may also participate.

The team uses best practice principles as the framework for diagnosis by integrating family and professional observations, medical history and formal assessment.

Three assessments are performed each month and at their completion, each family receives a written report, individualized to their child’s strengths and needs, with the team’s findings, diagnosis and recommendations for treatment and program planning.

Assessments are performed at the School of Medicine’s speech pathology and audiology department under the leadership of Vigil for children between the ages of 18 months and 18 years. Kinman oversees the behavior assessment team at Nevada Early Intervention Services where evaluations are conducted for children under the age of 3.

The assessment process unfolds in several stages. Consider the assessment of a young patient, whom we will call “Mary,” this summer at the speech pathology and audiology department at the University of Nevada School of Medicine.

While Mary, 5, was referred to the assessment team from her pediatrician, a psychiatrist, psychologist, or personnel from intervention services or school district staff may also refer a child for an assessment session.

A background family medical history is taken and the parents are interviewed regarding their concerns for their child, which in Mary’s case included failure to eat, obsessive-compulsive expression, inconsistency with names, volatile emotional behavior and other odd behaviors.

After being accepted for assessment, a developmental and behavioral history was obtained from Mary’s parents. Team members administered several tests to Mary including the Childhood Autism Rating Scale, a sensory profile, language and motor skills tests, play scale evaluations, adaptive behavior assessment and socialization exams. Later, another member observed her behavior and interactions with others at school.

All this preliminary information was gathered into a written report that team members discussed prior to bringing Mary to the speech pathology and audiology department for an observed four-hour assessment.

When Mary and her parents arrived for the afternoon assessment, team child psychiatrist Erika Ryst, M.D., assistant professor in the School of Medicine’s psychiatry department, re-interviewed the parents in further detail while other members of the team observed through a one-way mirror.

Kari Horn, the team’s clinic coordinator, played with Mary in another room. Other team participants for this session included Kinman, Vigil, Jacelyn Wedell, Ph.D., child psychologist with Washoe County School District; Roland Dillard, graduate assistant with the University of Nevada, Reno School of Social Work; Kate Green, a developmental specialist with the University’s Center for Excellence in Disabilities and Jan Marson, occupational therapist.

When the parental interview was complete, Marson and Mary went into the observation room to participate in a series of structured play modules each designed to test a particular behavioral, verbal or motor skill set as the rest of the team and Mary’s parents watched through the mirror.

Simple puzzles, pretend play, hand-eye coordination exercises, asking questions during play time and singing all unfolded in the observation room as Marson led Mary through the modules over the course of an hour.

During this time, the assessment team watched as Mary tried to control particular play situations with various behaviors including incessant laughing, arm flapping or complete avoidance. She kept her distance from Marson, then came in close, invading her personal space. She directly answered some questions and disregarded others. She sang with Marson then ignored her.

After about an hour, this portion of the assessment ended and the team reconvened while Mary and her parents waited in another area. Discussion ensued as the assessment team debated the extent, duration, appropriateness and possible causes of Mary’s various exhibited behaviors.

Each of the 14 exercises in Mary’s play time with Marson was designed to test a specific behavioral area.

The team members’ observations on each exercise were grouped into five specific categories, as outlined in the Autism Diagnostic Observation Schedule: language and communication skills, reciprocal social interaction, play skills, stereotyped behaviors and restricted interests and other abnormal behaviors.

After making their observations on each exercise, the numeric scores are grouped according to each of the five coded categories. The scores are added up and compared to the diagnostic criteria in the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders.

The assessment team members discussed several possible reasons for Mary’s unusual behavior including poor dental hygiene which made it uncomfortable for her to eat, the possibility of brain seizures, side effects from anti-anxiety medications, family environment and cultural considerations before adding up the scores for a final diagnosis.

However, the assessment process doesn’t stop at a diagnosis. Team members immediately moved into a discussion on recommendations for the family.

Once team members agreed upon the list of recommendations, Mary’s parents joined the discussion and received their child’s diagnosis. “Our preliminary recommendation is that your daughter meets the criteria for autism,” Vigil gently told Mary’s parents. “We have further concerns with her feeding problem.”

As Mary’s mother teared up and expressed her guilt at having somehow caused her daughter’s condition, team members were quick to validate her feelings and let her know she was not responsible for the diagnosis.

Ryst urged Mary’s parents to maximize their child’s strengths, which are many, and to try not to get caught up in labels. “Children with autism have a different way of being and processing things,” she said.

“She has definite strengths,” echoed Wedell. “We know this is a lot to take in right now, so we will follow up with you regarding these recommendations,” Vigil said. She assured Mary’s parents there were many resources available for families and that team members would help guide them to those various resources.

Mary’s father expressed his gratitude at the team approach to figuring out his daughter’s condition, while her mother asked for advice on how to deal with Mary’s tantrums.

Vigil cautioned the parents that the assessment results and the diagnosis will be difficult to absorb for awhile.

When Mary’s father asked about her placement on the autism spectrum disorder, Vigil said it is difficult to know until a coordinated therapy treatment program can be established between all involved disciplines.

Green cautioned that there is quite a bit of information available on the Internet, but that not all of it is accurate and urged Mary’s parents to be cautious of what they read online.

Kinman emphasized that autism is a range of disorders and that the team was fairly certain that Mary did not have Asperger’s syndrome or pervasive development disorder-not otherwise specified, two other disorders on the autism spectrum.

“Fifty percent of kids with autism have normal IQs and can make huge progress,” Kinman said.

Since the assessment team formed in 2006, nearly 40 assessments have been performed with 46 to 49 percent of those children tested being ultimately diagnosed with some condition on the autism disorders spectrum.

The data gathered from the assessments spurred Vigil’s academic interests to start a research group which has received approval from the University’s institutional review board for additional study. The group will focus on two different aspects of the data generated.

The first research proposal, which was approved in May, asks the question—Why are health care professionals referring children to the assessment team when ultimately the children are found not to have autism after an assessment?

“We want to know what professionals are seeing in these children that makes them think it is autism when half of the time it is not,” Vigil said. She said an initial review of the data shows that the children who are ultimately not diagnosed with autism may have more complex family histories. “There is complex behavior in these children so we want to address the differences between those who have autism and those who do not,” Vigil said.

The second proposal, which is still in the formation stages, will be the master’s thesis for second-year speech pathology and audiology graduate student Jessica Stewart.

It will ask individual professionals, such as child psychologists, child psychiatrists, occupational therapists, pediatricians and speech pathologists, to review tapes of previously assessed children to make a diagnosis on their own, without the input of other professionals.
The focus will be increasing awareness among professionals regarding their use of some of the preliminary screening tools available to them.

“The focus of this master’s thesis will be a push to get professionals to use best practices for diagnosing children with autism,” Vigil said.