Seeking Diagnosis: What to expect at my child’s first diagnostic appointment

March 14, 2024

Navigating the path to a potential autism diagnosis for your child can be an emotional and complex journey filled with many questions and uncertainties. Understandably, parents and caregivers often find themselves wondering about the specifics of the diagnostic process: How long does it take? What actually happens during the appointment? Does it hurt? Will I be allowed to stay with my child throughout the evaluation? And what if my child won’t cooperate? This article aims to clarify these questions, providing clear answers and reassurance to families entering this important phase.

To guide you through the initial appointment, we will draw on expert insight and practical advice, offering a clearer understanding of what to expect and how to prepare, ensuring you and your child navigate this journey feeling confident.

You suspect your child may be autistic. After researching, you decide to make an appointment with a pediatric neurologist. But now you’re wondering what exactly will happen at your first appointment. Dr. Melissa Jones, a pediatric neurologist at Houston Area Pediatric Neurology in Katy, Texas, shared with us what might occur:

First, a pediatric neurologist is a medical doctor who specializes in diagnosing and treating neurological disorders in children, ranging from newborns through adolescence. Neurological disorders are diseases of the brain, spinal cord, nerves, or muscles. These specialists have expertise in the unique aspects of children’s developing nervous systems, including conditions present at birth (congenital), developmental issues, or diseases that manifest in childhood. Pediatric neurologists deal with a wide range of conditions, such as:

Epilepsy and seizure disorders
Muscle and nerve diseases
Developmental disorders
Cerebral palsy
Headaches and migraines
Brain tumors
Neurogenetic disorders
Infections and inflammatory conditions
Traumatic brain injury

Their role involves conducting various diagnostic tests to diagnose these conditions accurately. They also prescribe treatment, which can range from prescribing medication, recommending surgery and/or therapies like physical therapy, occupational therapy, and speech therapy, to advising on diet and lifestyle changes. Pediatric neurologists work closely with families to manage a child’s condition and improve their overall quality of life, often coordinating care with other healthcare professionals.

The initial appointment to seek an autism diagnosis typically takes about an hour. The actual assessment used to diagnose autism is The Childhood Autism Rating Scale (CARS). One of the most commonly used is the CARS, a behavior rating scale containing 15 items the doctor will rate for frequency, intensity, duration, and peculiarity.

The doctor will interview the parent/caregiver to gather the information needed to complete the CARS and observe the child. If the child allows it, the doctor may get on the floor and interact with them. Often, this is difficult on the first visit since the doctor is unfamiliar with the child, which may cause them anxiety and distress. If interacting with the doctor is too stressful or overwhelming, then just observing the child while interviewing the parent usually provides enough insight for the assessment.

The doctor is also going to prescribe general testing during the first visit. Some standard tests likely to be prescribed are:

Blood work to check metabolic/inflammatory/infectious/vitamins
Genetic testing (Chromosomal Microarray and Fragile X)
EEG if there has been any regression in behavior/speech or concern for seizures (start with Routine; sometimes need 24-72 hour EEG depending on the situation)
Possible MRI brain (not always mandatory)

Medications will only be prescribed at this time if test results come back abnormal or behaviors are unmanageable, and it is in the best interest of the child to try a medication.

The doctor will also make recommendations and write prescriptions for therapies likely to benefit the child. Some of these therapies are:

Speech therapy – used to treat language disorders, speech disorders, and swallowing disorders;
Occupational therapy – teaches skills and everyday tasks needed to live more independently;
Social therapy – usually a group therapy that helps individuals gain interpersonal and communication skills;
ABA therapy – focuses on how behaviors change or are affected by the environment, as well as how learning takes place.

If the diagnosis is straightforward and uncomplicated (which is frequently the case), a diagnosis and all the therapy prescriptions will be provided on the first visit. If, however, the diagnosis is more complicated and the doctor is not 100% certain (which is atypical but does occur), then further testing may be prescribed to look for causes other than autism, such as seizures or metabolic disorders. When further testing is ordered, a definitive diagnosis will not be given at the initial appointment.

Seeking an autism diagnosis for your child can be a step filled with uncertainty. Dr. Jones has provided valuable insights into what families can expect during their first appointment with a pediatric neurologist. This initial visit is designed to be thorough and compassionate, aiming to understand your child’s unique needs and begin formulating a path toward diagnosis and care. Remember, this first appointment is just the beginning of a supportive and ongoing relationship with your pediatric neurologist, who will be there to guide and assist your family through the complexities of neurological care and beyond.