Autism

Autism starts when a child is very young. Children with an autism spectrum disorder have:

• language that develops slowly or not at all
• a lack of interest in social play, making eye contact, smiling, or cuddling
• certain behaviors that are repeated or intense reactions to changes in routine

Children with autism may also have very strong reactions to certain things they touch, taste, or hear. They may get upset easily or have a lot of tantrums.

The Need for Help

Today, we know that autism spectrum disorder is more prevalent than we once thought. In Iowa alone, there are thousands of children diagnosed with autism spectrum disorder. Coordinating care between several specialists can be a complicated and overwhelming process, especially for families dealing with a new diagnosis. University of Iowa Stead Family Children’s Hospital is here to make that process easier.

Diagnosis and screening of autism spectrum disorders (ASD)

ASDs are a group of neurodevelopmental disorders characterized by significant impairments in the areas of communication, social interaction, and atypical behaviors.

ASDs are four times more common in males than females and can be associated with intellectual impairment and co-occurring medical diagnoses including seizure disorders, anxiety, depression, and attention deficits.

Prevalence rates for ASDs have risen substantially over the past two decades, with a recent epidemiological survey identifying a national rate of 1 in 110 children. Based upon this prevalence rate, it is estimated that approximately 6,500 children in Iowa meet the diagnostic criteria for an ASD.

Much of the increase in autism appears to be the result of both improved detection and a broadening of the diagnostic criteria, although other factors that may play a role are currently being explored.

Autism is a highly heritable disorder and multiple candidate genes have been implicated.

Lifetime costs associated with management have been estimated to exceed $3 million per person with ASD.

Diagnosis of ASDs

The primary ASDs are Autistic Disorder (or “autism”), Asperger’s Disorder, and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).

Autistic Disorder or “autism” is defined by qualitative impairments in social interaction, communication, and restricted repetitive and stereotyped patterns of behavior, interests, and activities. Common symptoms include poor eye contact, poor “reading” of social cues, failure to develop peer relationships, lack of social or emotional reciprocity, delayed speech, difficulty sustaining conversation, lack of make-believe play, repetitive motor mannerisms, and rigid adherence to routines.

Asperger’s Disorder is defined by impairments in social interaction and restricted or repetitive patterns of behavior, interests, and activities. Common symptoms include poor “reading” of social cues, failure to develop peer relationships, lack of emotional reciprocity, intense interests or preoccupations, and rigid adherence to routines. Children with Asperger Syndrome do not show general impairments in language or cognitive development, although specific impairments in pragmatic (social) language and visual-motor skills are common.

The diagnosis of PDD-NOS is appropriate when there is pervasive impairment in the development of reciprocal social interaction associated with impairment in either verbal or nonverbal communication skills or with the presence of stereotyped behavior, interests, and activities, but the criteria are not met for a more specific ASD. This diagnosis is often used when a child shows several symptoms consistent with an ASD, but he or she does not meet the full criteria for either Autistic Disorder or Asperger’s Disorder.

Importance of early identification

Although there is currently no cure for ASD, interventions have been identified that can successfully improve functioning for many persons with this diagnosis. The most positive outcomes have been shown to occur when intervention is delivered intensively to young children. The importance of early identification in improving outcomes has resulted in an emphasis on training healthcare providers to accurately identify young children at risk for autism. In 2007, the American Academy of Pediatrics recommended that pediatricians conduct universal screenings using an autism-specific screening instrument at 18- to 24-month appointments.

Screening for autism

In most cases, autism can be reliably diagnosed as early as 18 months of age. An accurate diagnosis is based on observation of the child’s communication, social interaction, behavior, and developmental level. Early signs or “red flags” that a child may have an autism spectrum disorder include:

• Little or no eye contact
• Poor response to name
• Lack of or delay in spoken language
• Failure to respond to or initiate joint attention
• Failure to imitate caregivers
• Lack of interest in other children
• Lack of spontaneous or make-believe play
• Persistent fixation on parts of objects
• Unusual motor mannerisms (e.g., hand-flapping, lining up objects)

Referral for a formal evaluation of autism may be warranted if a parent reports that their child exhibits one or more of these behavioral indicators.

Several measures have been developed to assist in the screening of ASD in young children. The Modified Checklist for Autism in Toddlers (M-CHAT) is a 23-item screener developed for toddlers between the ages of 16 to 30 months. It usually takes around five minutes for caregivers to complete the M-CHAT and two minutes for a healthcare professional to score the measure. The M-CHAT is free and currently available in 30 languages. Free online administration and scoring will soon be available as well. The M-CHAT includes seven critical items that best discriminate children at high risk for autism (these include not taking an interest in other children, not pretending, not using index finger to point, not showing objects to parents, not responding to name when called, not following pointing by adults, and appearing not to hear). A child is considered to have failed the M-CHAT when two or more of these “Best7” critical items are endorsed or if any three or more items are endorsed. A questionnaire is available to follow up on items endorsed by caregivers. Research using the M-CHAT with the revised Best7 scoring suggests that the instrument has very good sensitivity and specificity.

The Screening Tool for Autism in Toddlers (STAT) is intended for use with young children ranging in age from 24 to 35 months. Unlike the M-CHAT, which is designed to be used as a general screener, the STAT was designed to help differentiate toddlers with ASD from toddlers who have already been identified as being at-risk for a developmental disability. The STAT is administered via an observation that involves a fairly brief (20-minute) play-based interaction with the toddler. During this observation, the screener attempts to elicit and observe early social and communicative behaviors in four domains: Play, Directing Attention, Motor Imitation, and Requesting. Research with the STAT indicates that the instrument has good psychometric properties.

Next steps after screening

If a young child does not pass an autism screen, a formal evaluation for an autism spectrum disorder may be warranted. This evaluation should include a developmental history, developmental assessment, and direct observations of the child’s communication and social behavior. If local evaluation resources are not available, the Autism Center at the University of Iowa Children’s Hospital can assist families in obtaining appropriate evaluation through the Center for Disabilities and Development, Pediatric Psychology, or Child and Adolescent Psychiatry.

Coordinated Care

The UI Stead Family Children’s Hospital Autism Center brings together a wide range of specialists to provide the best possible care for children with autism. We offer assessments, treatment recommendations, and ongoing follow-up care. We work hard to make your visits convenient and efficient, and we communicate with your family doctor or other health care providers to make sure everyone understands your child’s needs.

Services

We offer the following clinical services:

• Team evaluations for diagnosis: Determining whether your child has autism and providing treatment recommendations
• Medication management: Recommending and adjusting medications used by children with autism
• Behavior assessment: Identifying challenging behaviors, including feeding problems, and finding ways to help
• Early intervention: Teaching play and communciations skills to young children with autism
• Evaluating academic and learning problems, including intellectual disability
• Evaluating speech and language, feeding, and sleep disorders
• Evaluating daily living skills, such as eating, dressing, and walking
• Evaluating assistive technology needs
• Evaluating and treating adults with autism spectrum disorders

We work hard to make your visit convenient and efficient, and we communicate with your family doctor or other health care providers to make sure everyone understands the care your child needs.

Depending on a patient’s needs, appointments with the Autism Center may be provided by one of four services:

• Center for Disabilities and Development
• Pediatric Psychology
• Child and Adolescent Psychiatry Clinic
• Adult Psychiatry Clinic

To request an appointment at any one of these four services, please call 855-842-8847.

Resources and Community Support

We connect families to resources and support in their communities, including respite care and child care, safety equipment, support groups, vocational programs, self-advocacy support, and more.

Here are some local resources we like:

• Disability Resource Library
• Safety Store
• Autism Society
• Iowa Compass

Here are some national resources we like:

• Autims Speaks
• National Autism Center
• Center for Disease Control and Prevention
• Autims Internet Modules
• American Academy of Pediatrics

View and print materials commonly distributed prior to a visit, during a visit, and after a visit to the Autism Center:

• Autism Center Brochure
• What Is an Autism Spectrum Disorder?
• I Think My Child May Have Autism...
• Helpful Resources Before Your Child's Appointment
• What to Expect When you Come to the Autism Center
• What Is an Individual Education Plan (IEP)?

Education and Training

We provide autism education and training to parents, teachers, students, and doctors through seminars and conferences. We focus on early identification, help for challenging behaviors, and proven methods for treating autism.

Research

We are actively researching the causes of autism, as well as new and better treatments. Genetic testing, behavior therapy, and the use of telehealth services for families in other communities are just a few of the areas we are exploring to provide the latest and best care for those with autism.

Still have questions about the Autism Center?

See if our Frequently Asked Questions section can help.