Autism is an incredibly diverse and misunderstood disorder. No two diagnoses look the same. So it’s no surprise that, when a child shows early signs of atypical neurobehavior, parents can have a thousand questions about how to support their child and what to expect should they consider an autism screening and the diagnostic process at large.
First things first, parents will want to start with autism screening tools, which are built to fit and accommodate a range of children. Some screenings may be more play-based–like for toddlers and infants–while others may be conversational and meant for older children with verbal skills.
This is where diagnostic services can differ; however, there are key components and motivations of ASD screenings and the ASD evaluation process that are universal. Read on to find out more about the general autism screening process, how autism screenings and evaluations differ, and what parents can expect from the high quality diagnostic support services at Jigsaw Diagnostics.
Just as no two autism diagnoses are the same, the diagnostic process can also vary depending on the needs of the family and the child. Generally speaking, however, an autism screening is a swift assessment that evaluates a child’s neurobehavior.
Screenings use a variety of formal and informal tools for diagnosing autism risk; however, most doctors and specialists follow screening guidelines from the American Academy of Pediatrics (AAP) and the National Center on Birth Defects and Developmental Disabilities (NCBDDD).
Parents may have heard “screening” and “evaluation” used before, but the two terms are not interchangeable. A screening is a quick check of signs and symptoms to understand a child's risk level of autism. It is purposefully built to cast a wide net and not to formally diagnose a child. If a child "fails" the screening and is considered high risk, they still may not be diagnosed with autism. Similarly, if a child "passes" or screens low risk, they still might meet criteria for the diagnosis. In these cases, children will require developmental evaluations for autism.
According to recent biennial data released by the Center for Disease Control and Prevention on the prevalence of autism spectrum disorder in the United States, 1 in 44 children are identified as having ASD. Many experts note that this is a 10% increase from previous statistics about the prevalence of autism, and many also note that part of the reason for this is our broadening understanding of the various ways ASD can manifest in young children.
Autism diagnostics and screenings have become increasingly sophisticated, leaving many parents to wonder how long screenings and a typical ASD evaluation process can take. Additionally, they may be curious about how long it can take to reach a final diagnosis.
In total, the average autism diagnosis can take several months, starting as early as 18 months of age and reaching a final diagnosis by age 2, according to the CDC. Diagnosing autism often begins with routine screenings administered throughout milestone check-ins by a doctor or certified specialist and those screenings can range in length from a 9-item provider-completed test to a 40-item checklist completed by the parents.
As stated before, the screening process is often the first step in what can be a long road to a final diagnosis. In order to make any initial evaluations as seamless as they can be, parents can prepare for check-ins with physicians by gathering the child’s medical records and family history.
One very important step in diagnosing autism is to be aware of your family’s health history. For instance, does your child have siblings living with ASD? Or do they have any relatives living with diagnosed or undiagnosed autism? If a child is adopted, clinicians will need to review all available medical records you may have access to.
Experts have tied diminished oxygen at birth and premature births to a higher risk of autism. Additionally, complications during gestation or low birth rate can also be tied to a higher risk for autism. Any information about a child’s birth and the pregnancy can help providers make a clear diagnosis.
Parents’ personal notes about their child’s development and behavioral observations can also be critical in diagnosing autism. So parents should make sure to bring their notes to any and all initial conversations with providers. Here are some questions experts recommend asking prior to autism screenings and evaluations:
Additionally, clinicians will certainly want any official records and reports of missed milestones or behavioral observations. For instance, parents can ask themselves the following behavior questions prior to an autism screening or evaluation:
Preparing to answer some of these questions can help navigate routine autism screenings and evaluations, as well as initiate the first conversations about receiving a diagnosis. Per organizations like the AAP and NCBDDD however, there are more formal questionnaires and forms parents can expect to receive from a clinician during a developmental check-in.
The AAP is a regulatory body in the Department of Federal Affairs that handles policy and practice recommendations for all pediatrics and subspecialists in the country. As it pertains to autism, the AAP recommends testing all children for ASD alongside their general development screenings at 9, 18, and 30 months.
The AAP commonly recommends a clinically validated ASD screening tool called the Modified Checklist for Autism in Toddlers (MCHAT-R/F). While it isn’t meant to diagnose a child with autism, it can help pediatricians and specialists identify children that may be at high risk of autism.
For parents seeking a more integrated approach with their child’s development check-ins, a practitioner may recommend The Survey of Well-being of Young Children (SWYC): Parent’s Observations of Social Interactions (POSI). This test is administered to children 16 to 35 months of age and contains a 6-item screener with a focus on social interactions. It typically takes about five minutes to complete and it can help identify early signs of ASD.
The AAP recognizes many additional autism screening tools that practitioners may recommend at different stages of a child’s development. We will share just a few of them below.
While autism screening tools are incredibly important for identifying early signs and children who may be at risk, they generally are not used to reach an autism diagnosis. The ASD diagnostic evaluation process is a little bit different and can even have parents waiting up to 2 to 3 months to receive final results. Jigsaw’s online diagnostic process, however, is making an impact in the efficiency and speed for receiving an autism diagnosis. This means parents can focus on early intervention and getting their child the support they need sooner while the child is in the critical period for intervention to have the greatest impact.
The first step in our online evaluation for autism is a free consultation with a Jigsaw expert. This initial conversation consists of a 30 minute phone call in which parents can talk through concerns about their child and learn more about our telemedicine evaluation process and diagnostics services. During this call parents can also schedule a diagnostic appointment within one to two weeks of our initial free consultation.
Prior to the diagnostic appointment, parents will receive a welcome email with a link to their online Intake packet. This packet takes approximately 1 hour to complete and begins with an initial signing of informed consent as well as a notice of privacy policies.
This Intake packet does not have to be completed all at once — parents are free to take breaks and come back to their Intake packet as needed. Parents can expect to answer questions about their child’s medical history, development, and behavioral observations. Additionally, we ask parents to upload relevant video, records, and reports at least 24 hours before their diagnostic appointment.
Our online in-depth evaluation includes an up to 3 hour meeting with a licensed clinical psychologist. During the appointment our expert will ask parents questions and guide them through a play session with their child. This will tie into a discussion at the end of the appointment about the psychologist’s findings and a written follow-up diagnostic report sent within 1 week. The length of this appointment is also meant to preserve ample time for parents to ask questions and discuss next steps with the clinician.
After the in-depth evaluation and written diagnostic report, parents will receive a tailored care plan with recommended next steps, resources in their community, therapies, and at-home techniques for their child. Parents can also request a follow-up discussion to talk about any concerns, ask questions, or learn more about additional services.
Traditional diagnostic methods can take months or even years to reach a final diagnosis. With Jigsaw, parents can expect their first diagnostic conversation within a week of their initial call and a much more streamlined evaluation process for receiving a final diagnosis and care. Find out more about our services or schedule your free consultation with a Jigsaw clinician.