Obtaining A High-Quality Autism Evaluation
Dr. Allison Kawa, Los Angeles child psychologist, discusses early assessment for autism spectrum disorder.
Increased public awareness has put autism spectrum disorders on everyone’s radar. Since one in every 110 children has an autism spectrum disorder, chances are that autism has somehow touched your life.
Yet for many people, questions persist about what autism really is and how it is diagnosed. The term “autism spectrum disorder” (ASD) refers to a cluster of three diagnoses: Autistic Disorder, Asperger’s Syndrome, and Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS).
The common symptom for all three conditions is impaired social-communication, meaning difficulty communicating effectively with others in socially meaningful exchanges.
Individuals with Autistic Disorder have problems or delays in three areas: communication, reciprocal social interactions, and restricted and repetitive behaviors.
A communication problem can come in many forms, such as a speech delay, unusual speech habits, or difficulties starting and sustaining back-and-forth conversations. A delay in what is called imaginary play skills also falls under the communication umbrella. Imaginary play includes activities such as pretending to be a nurse by using a pencil to take a doll’s temperature.
Social deficits include unusual nonverbal communication such as poor eye contact or lack of gestures. Kids with social deficits also have problems with peer relationships, and difficulty with social reciprocity which includes limited interaction patterns such as not sharing toys or not offering comfort to others when they are hurt.
Restricted and repetitive behaviors can include odd motor mannerisms such as hand flapping, excessive interest in one specific topic such as dinosaurs, unusual interests ( for example an interest in can openers), or repetitive use of objects such as lining up toys over and over.
Individuals with Asperger’s Syndrome have problems with reciprocal social interactions and restricted and repetitive behaviors, but do not have difficulty with communication. Many people think that Asperger’s is a mild form of autism, but this is actually inaccurate. Asperger’s Syndrome is not a mild form of Autistic Disorder, but a different type of Autistic Spectrum Disorder. Individuals with Asperger’s can actually have significant difficulties in the areas of social skills and restricted behaviors.
A diagnosis of Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS) is made when there are difficulties with social interactions and possibly communication and/or restricted and repetitive behaviors, but there are not enough symptoms to diagnose Autistic Disorder or Asperger’s Syndrome.
Unfortunately, although ASD can reliably be diagnosed in two-year-old children and sometimes as young as 18 months, the average age of diagnosis is closer to four years old.
This means that many children are losing two years of precious early intervention time. Part of the solution for the late diagnosis problem is to arm parents with the information they need to obtain a high quality evaluation. Parents must be educated consumers and they must advocate for their children. They should always trust their “gut instincts” and pursue a thorough evaluation when there are warning signs.
The following is a red flag list for autism—any child demonstrating these symptoms should be evaluated for ASD:
- Does not babble or coo by 12 months
- Does not gesture (i.e., point, wave, grasp, etc.) by 12 months
- Does not say single words by 16 months
- Does not respond to his name
- Does not smile when smiled at
- Displays echolalia (i.e., repeating back what someone just said in a meaningless way) in the absence of normal language development
- Does not say two-word phrases spontaneously by 24 months
- Throws intense or violent temper tantrums
- Has odd movement patterns
- Has poor eye contact
- Does not seem interested in other children
- Does not know how to play with toys
- Gets “stuck” on things over and over and cannot move on to other things
- Shows unusual attachments to toys, objects, or schedules (e.g., always holding a string or having to put socks on before pants)
Moving forward with an ASD assessment can be frightening, stressful and confusing for a parent. There is currently no blood test or brain scan that will confirm a diagnosis of autism. Rather, ASD is diagnosed based on behaviors that are observed and/or reported.
Providers have varying levels of experience diagnosing ASD and without specialized training, might not always know what to look for. It is, therefore, important that the provider chosen by the parent be experienced in diagnosing ASD.
The California Department of Developmental Services has clearly defined Best Practices Guidelines for diagnosing ASD. When choosing a provider, parents should enquire about the assessment procedure. A Best Practices Evaluation should include:
Thorough developmental and medical history of the child obtained through parent interview; the gold-standard instrument for this is called the Autism Diagnostic Interview- Revised (ADI-R)
- Behavior assessment of the child; the gold-standard instrument for this is called the Autism Diagnostic Observation Schedule (ADOS)
- Cognitive testing (e.g., an IQ test)
- A measure of adaptive functioning (i.e., parent interview or questionnaire about how well the child functions independently)
When possible, an observation of the child at school is important for diagnosis (to observe how the child interacts with peers) and to help determine whether the child’s current school placement is appropriate. Medical tests, including a genetic work-up and neurological evaluation should be also included, as well as vision and hearing testing if not already done.
Many providers can perform an ASD assessment, including developmental pediatricians, pediatric neurologists, and psychologists.
Parents of children identified by their local regional center or school district with ASD should also consider pursuing a private evaluation. A thorough evaluation and treatment plan by an experienced provider will empower parents to advocate for their child with maximum effectiveness.
The benefit of these evaluations is comprehensive treatment planning that covers all areas of the child’s life, not just school or home.
Another advantage is that private providers have no hidden agenda or ulterior motives, such as keeping costs down by not recommending services. Public entities that fund services (e.g., school districts or regional centers) do not always advertise the full gamut of services available. Parents cannot know what to ask for if they do not know what is available.
Dr. Kawa is a licensed child psychologist specializing in diagnosis and treatment planning for children and adolescents with neurodevelopmental disorders, including autism, ADHD and learning disabilities. In addition to her private practice in West Los Angeles, Dr. Kawa teaches and consults at the Reiss Davis Child Study Center at Vista Del Mar. She can be reached via phone or email.
Phone: (310) 387-2888