Education for Families

What is Autism? 

Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. According to the Centers for Disease Control, autism affects an estimated 1 in 54 children in the United States today.

We know that there is not one autism but many subtypes, most influenced by a combination of genetic and environmental factors. Because autism is a spectrum disorder, each person with autism has a distinct set of strengths and challenges. The ways in which people with autism learn, think and problem-solve can range from highly skilled to severely challenged. Some people with ASD may require significant support in their daily lives, while others may need less support and, in some cases, live entirely independently.

Several factors may influence the development of autism, and it is often accompanied by sensory sensitivities and medical issues such as gastrointestinal (GI) disorders, seizures or sleep disorders, as well as mental health challenges such as anxiety, depression and attention issues.

Signs of autism usually appear by age 2 or 3. Some associated development delays can appear even earlier, and often, it can be diagnosed as early as 18 months. Research shows that early intervention leads to positive outcomes later in life for people with autism.

* In 2013, the American Psychiatric Association merged four distinct autism diagnoses into one umbrella diagnosis of autism spectrum disorder (ASD). They included autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. 

Symptoms of Autism

The core symptoms of autism are:

• social communication challenges and

• restricted, repetitive behaviors.

Symptoms of autism may:

• begin in early childhood (though they may go unrecognized)

• persist and

• interfere with daily living.

Specialized healthcare providers diagnose autism using a checklist of criteria in the two categories above. They also assess autism symptom severity. Autism’s severity scale reflects how much support a person needs for daily function.

Many people with autism have sensory issues. These typically involve over- or under-sensitivities to sounds, lights, touch, tastes, smells, pain and other stimuli.

Autism is also associated with high rates of certain physical and mental health conditions.

Social communication challenges

Children and adults with autism have difficulty with verbal and non-verbal communication. For example, they may not understand or appropriately use:

• Spoken language (around a third of people with autism are nonverbal)

• Gestures

• Eye contact

• Facial expressions

• Tone of voice

• Expressions not meant to be taken literally

Additional social challenges can include difficulty with:

• Recognizing emotions and intentions in others

• Recognizing one’s own emotions

• Expressing emotions

• Seeking emotional comfort from others

• Feeling overwhelmed in social situations

• Taking turns in conversation

• Gauging personal space (appropriate distance between people)

Restricted and repetitive behaviors

Restricted and repetitive behaviors vary greatly across the autism spectrum. They can include:

• Repetitive body movements (e.g. rocking, flapping, spinning, running back and forth) 

• Repetitive motions with objects (e.g. spinning wheels, shaking sticks, flipping levers)

• Staring at lights or spinning objects

• Ritualistic behaviors (e.g. lining up objects, repeatedly touching objects in a set order)

• Narrow or extreme interests in specific topics

• Need for unvarying routine/resistance to change (e.g. same daily schedule, meal menu, clothes, route to school) 

Importance of Early Intervention

What can early intervention do for your family?

• Provide resources, support and information: Early intervention provides parents with resources, supports and information to enhance their child’s communication skills. Working together with a provider trained in early child-hood enables parents to feel confident that they are facilitating their child’s communication development.

• Improve relationships: When communication and language are delayed, understanding and interacting with other children will also be delayed. This makes it difficult to develop friendships, solve problems and learn to negotiate conflicts. Through early intervention, children learn how to use language to convey messages, to express feelings and to interact with their friends.

• Improve behavior: Children with delayed communication development may get frustrated and exhibit challenging behaviors to compensate for their delays. It is difficult to express wants and needs when communication is delayed so often a physical response such as biting or hitting takes its place. Intervention will provide support and strategies to facilitate your child’s communication needs.

Promote future success in school

Communication development sets the stage for literacy and influences later success in school. There is evidence suggesting that having a good command of language goes hand-in-hand with the ability to imagine and to create new ideas and, eventually, to read and write.

Make learning fun

Early intervention will help families add support into everyday activities that they do with their child. This provides lots of opportunities for children to learn — not only when playing but also when getting dressed, brushing teeth, preparing meals, eating, bathing, helping with family chores, getting ready for bed, and lots of other activities. Intervention also brings the family a greater understanding of their child’s needs and how to break learning down into small steps for their child. When children know what they are expected to do and can be successful, they have fun learning in almost any activity, and want to learn more.

Though some children who are late in communicating outgrow this delay, it is important to remember that many need help to be able to communicate as expected for their age.

What is a diagnostic evaluation and what to expect?

What is the purpose of a diagnostic evaluation?

Because there are no lab or other medical tests that can diagnose ASD, we focus on behaviors that can be observed by parents, teachers, and others. To help us figure out if a child has ASD (often called being “on the spectrum”), we need to observe and evaluate his or her development in several key areas. These areas include language & communication, social awareness and interaction, and restricted interests & repetitive behaviors. The purpose of the diagnostic evaluation is to discover whether the child has any symptoms of ASD, how many symptoms they have, and how much those symptoms impact the individual’s ability to fully interact with their environment.

How are ASD symptoms evaluated?

The evaluation of ASD symptoms should include at least two key components: Parent/Caregiver Interview and Direct Observation. The parents/caregivers are interviewed about the child’s development from birth to the time of evaluation and will focus on symptoms of ASD specifically. This interview may also explore pregnancy and birth history, health history, school history, behavioral and emotional health, and any other details that may affect the child’s behavior or development. The child must also be observed by a trained evaluator who can determine if symptoms reported in the interview are visible to others.

In many cases parent/caregiver interview and direct observation are enough to evaluate the ASD symptoms. In some situations, it is helpful to interview the child’s teacher or other adults who know the child well. This can be done in person or over the phone.

The goal is to have enough information about the child to understand how she functions in different environments. The person conducting the evaluation compiles all of the information and applies his or her training and experience to determine the diagnosis.

What tests are used during a diagnostic evaluation? 

Our ASD specialists are trained to use a test called the Autism Diagnostic Observation Schedule (ADOS, for short). The ADOS is a test that helps a trained evaluator make objective ratings of the child’s behavior and determine whether the behavior pattern suggests a diagnosis of ASD.* It takes between 30 and 60 minutes to conduct the ADOS test.

The ADOS is a sequence of play and social activities that are done with the child. In young children, the parent is also present, allowing for observation of the child’s interaction with familiar adults. The ADOS activities provide an opportunity to observe the child’s social and communication skills and any repetitive behaviors that happen frequently.

Other tests for autism might include the Social Communication Questionnaire, Autism Spectrum Rating Scales, Social Responsiveness Scale, Gilliam Autism Rating Scale, and others.

It is not required that a particular test be given in order to determine a diagnosis of ASD. There is no test that can make the diagnosis without the skilled clinical judgment of the evaluator. However, the ADOS is often a very helpful tool during the direct observation part of the evaluation. Some in the field of ASD consider it essential.

*Note – children in Utah who have Medicaid insurance are required to have the ADOS test in order to qualify for autism treatment services. 

What other areas are evaluated during a diagnostic evaluation?

Because ASD is a developmental disability, the evaluation will usually include tests of language, intelligence, behavior, and adaptive behavior (daily living skills and activities). Some tests are given directly to the child, and others are forms completed by the parent/caregiver. Depending on the child, other areas of evaluation may include attention, memory, motor functioning, and academic achievement. Evaluation of these areas is not always possible, or necessary, in order to diagnose autism. However, this additional evaluation can often help to better understand the child’s current levels of functioning and guide treatment and education decisions.

A skilled evaluator will always objectively consider other possible diagnostic explanations or conditions that may happen along with, or in place of, ASD. They seek to answer the question, “What explains the challenges this child is having, and that are a concern to his parents and teachers?” This leads to far greater understanding of the child than simply answering the question, “Does this child have ASD?”

Who can diagnose a child with ASD? Autism Spectrum Disorder can be diagnosed by a medical or mental health professional with knowledge of ASD. There is a growing understanding of the importance of specialized training for professionals and also the use of high-quality diagnostic tools and methods. Some agencies may not regard a diagnosis of ASD as “official” unless it was made by a psychologist, developmental pediatrician, or neurologist. Some agencies may require the use of a specific test (often the ADOS) when deciding whether a child qualifies for services or benefits.

At ABS, our evaluators are psychologists with advanced training and experience in conducting diagnostic evaluations. We strive to always conduct a thorough evaluation of both the child’s disabilities and strengths and abilities.

How long does the diagnostic evaluation take?

At ABS, due to the comprehensive nature of our evaluation process, a typical evaluation generally lasts 3 hours for a young child (under 5) and up to 6 hours for an older child. This includes the parent/caregiver interview, direct observation, and giving various other tests.  Breaks are provided regularly to keep the child comfortable and maintain optimal energy and cooperation. The psychologist usually spends 2-4 hours after the evaluation to score and interpret all the tests and write up a report.

What happens after the diagnostic evaluation?

Parents/caregivers schedule and attend a feedback meeting after the testing visit in which the evaluator will review the results of the evaluation and explain the diagnosis, recommend appropriate treatments, and discuss ways to help the child at school. We will also discuss whether there are any other evaluations the child might need. Additional evaluations might include speech/language, occupational therapy, and ABA assessment.

The final step is to receive a report of the evaluation, summarizing the parent/caregiver interview, direct observation, results of all tests and forms, recommendations for treatment, and resources the family may use to obtain additional information, support, etc.

What can I expect from the diagnostic evaluation?

A comprehensive evaluation will result in an increased understanding of your child’s unique strengths and challenges, diagnosis and severity of the condition at the time of the evaluation, and direction regarding treatment and educational planning.

Therapy and Support

What Therapies, Besides Play Therapy, Also Help with Autism?

A number of therapies can help people with autism improve their abilities and reduce their symptoms. Starting therapy early -- during preschool or before -- improves the chances for your child’s success, but it’s never too late for treatment.

The American Academy of Pediatrics (AAP) recommends you start to research therapies as soon as you suspect your child has autism, rather than waiting for a formal diagnosis. It can take a lot of time, tests, and follow-ups with specialists to get a formal diagnosis.

What works varies from person to person. Get to know some of the most popular -- and proven -- therapies.

Occupational Therapy

These activities help children with autism get better at everyday tasks, like learning to button a shirt or hold a fork properly. But it can involve anything related to school, work or play. The focus depends on the child’s needs and goals.

Speech Therapy

This helps children with speaking, as well as communicating and interacting with others. It can involve non-verbal skills, like making eye contact, taking turns in a conversation, and using and understanding gestures. It might also teach kids to express themselves using picture symbols, sign language, or computers.

To be most effective, speech therapists need to work closely with parents and teachers to practice these skills in daily life.

Applied Behavior Analysis (ABA)

This type of therapy uses rewards to reinforce positive behaviors and teach new skills. Parents and other caregivers are trained so they can give the autistic child moment-by-moment feedback.

Treatment goals are based on the individual. They might include communication, social skills, personal care, and school work. Studies show children who receive early, intensive ABA can make big, lasting gains.

There are different types of ABA. They include:

• Discrete Trial Training (DTT). This breaks a desired behavior into the simplest steps.

• Early Intensive Behavioral Intervention (EIBI). This form of ABA is designed for young children, usually under age five.

• Pivotal Response Treatment (PRT). The focus here is on important areas of a child’s development, like self-management and taking charge in social situations.

• Verbal Behavior Intervention (VBI). Improving a child’s verbal skills is the goal.

Social Skills Class

This is group or one-on-one instruction at home, in school, or in the community. The aim is to improve how a child interacts socially and forms bonds with others. This usually means learning through role playing or practice. Classes are often led by a therapist. Like ABA, parent training is key to helping a child improve his social skills.

Therapeutic Horseback Riding

Doctors also call this “hippotherapy.” Here, a child rides a horse under the guidance of a therapist. Riding is a form of physical therapy because the rider needs to react and adjust to the movements of the animal. Research shows it helps children from ages 5 to 16 improve their social and speaking skills. It can also help them to be less irritable and hyperactive.

Picture Exchange Communication System (PECS)

This form of therapy teaches children to trade pictures for items or activities. The system is designed for those who don’t speak, can’t understand, or are difficult to understand. PECS may not work for kids who don’t try to communicate or aren’t interested in particular objects, activities or food. A review of research on PECS found that those who used it had some improvements in communication but little or no gains in speech.