By Dr. Christopher J. Smith
The Importance of Early Diagnosis and Intervention of Autism Spectrum Disorder
Southwest Autism Research & Resource Center’s (SARRC) Chief Science Officer, Dr. Christopher J. Smith discusses the importance of early diagnosis when concerns are observed, the signs and behaviors to be aware of, as well as why early intervention creates the best possible outcomes.
I started working with families who were touched by autism nearly 30 years ago. At the time, we were still just understanding autism – and the resources and programs available were sparse. The whole process for screening, evaluation and diagnosis took as long as two years, resulting in lost time that would have been better spent on helping their child gain important skills.
For this reason, I have dedicated most of my career to improving the detection and diagnostic process, and the promising news is, we have made significant progress over the last few decades.
Today, parents have significantly better access to screening, diagnosis and early intervention than they ever had before. However, we’ve discovered yet another barrier – hesitation. At SARRC, we want to ensure that parents are informed, as well as armed with answers surrounding the importance of early diagnosis and intervention.
How Early Can an Autism Spectrum Disorder (ASD) Diagnosis Be Made?
Over the last several years, early diagnosis efforts have significantly improved. So much so, that we know that we can effectively screen a child for autism as young as 12 months.
At SARRC, one of our core goals is to ensure that children are diagnosed early, which we know provides the best possible outcomes for achieving their fullest potential. One way we’ve been actively implementing this goal is through partnering with a robust network of pediatricians in an effort to begin effective screening practices early and regularly throughout childhood.
What Are Some Early Indicators of Autism I Should Be Aware Of?
Although the presentation of autism can vary considerably among individuals, it affects every age group and occurs in all ethnic and socioeconomic groups. It can be, but isn’t always, associated with other conditions like intellectual impairment, difficulties in motor coordination, sensory processing, and attention, as well as physical health issues such as sleep and gastrointestinal disturbances. Parents shouldn’t look for any of these signs when deciding to pursue an evaluation. The assumption these conditions are more common than they are, can confuse parents and delay the process.
Currently, trained professionals can only diagnose ASD by observing emerging behavior or by noting significant differences from how a person’s peers’ function. For many, the most obvious signs and symptoms of ASD tend to emerge between 18 months and 3 years of age. For others, differences may not become obvious until childhood, adolescence, or, for some, even adulthood.
The most telling early indicators may be a reduced seeking of attention from parents, which can be tricky to detect because how do parents know how much kids should be seeking their attention? Subtle signs may include:
- Playing independently for longer periods of time (more than a few minutes at a time)
- Limited interest in one-on-one engagement
- Challenges with engaging in a fun activity with others, and chooses solitary activities instead
- Or, simply, the child is just behaving differently than other children the same age
If any of these scenarios are true, I recommend that parents seek an evaluation and be willing to express their child’s differences to the clinician.
Why Are Autism Diagnoses Often Delayed?
The general interpretation of the terms “diagnosis” and “disorder” indicate that something is “wrong,” and that can be a hard pill to swallow when you are referring to a toddler, which is someone that so many parents want so desperately to be perfect in every way.
However, in our large-scale research on screening, we found that about 75% of parents do not follow up on a failed screening with their pediatrician. We’ve seen a similar pattern when we conduct early screenings in schools. We don’t fully understand why this happens, but it does.
To seek a diagnosis means that the problems they are experiencing need to be greater than the desire to believe their child is perfect. That is a tall order. If we could reframe the connotation of “diagnosis” to “more information” or “needs support” that might lower the perceived impact of a diagnosis and make it less stressful for parents to choose to take part in the process. Additionally, parents may view an evaluation as an opportunity to learn more about their child’s development. If their child is diagnosed with autism, that can be like parents receiving a road map through a potentially scary and confusing terrain. Anything unknown is scary, especially when children are involved. In most cases, a diagnosis gives parents answers and concrete next steps to take. And finally, I cannot stress this enough: an early diagnosis coupled with early intervention creates improved outcomes for children and families in the long term.
What Can I Expect During the Autism Diagnosis Process?
A high-quality evaluation for autism includes two main components: 1) a developmental history interview with a parent, and 2) a direct behavioral observation. At SARRC, our process begins with the interview completed by phone with a parent or caregiver. Then, for clients ages 6 and under, our assessment includes the Naturalistic Observation Diagnostic Assessment (NODA) — a smartphone-based system that lets parents record and send videos to our staff for analysis in advance of the on-site evaluation. NODA was developed and validated from 2012 to 2015 with funding from the National Institute of Mental Health.
Currently, it is the most commonly used telehealth assessment method in the United States. At the end of your appointment, a licensed clinical psychologist will meet with you to review the results of the evaluation and guide your next steps. If the criteria for autism are met, our report will include all the information you need to get started with a treatment program either at SARRC or with another agency.
Overall, the advice I always encourage ahead of the diagnosis process is that it’s essential for parents to share their concerns or the differences they see in their child with their healthcare provider — versus, for example, only communicating a child’s strengths. Clinicians are looking for information that a child needs help, so it’s critical that parents are sharing the challenges or barriers that their child may be experiencing.
If I’m Concerned About My Child’s Development, What Are My First Steps?
SARRC is here to help! Our supportive Family Resource Team is a free community resource. We encourage you to contact our team at 602.606.9806 or visit autismcenter.org if you have any questions about the diagnostic process, concerns about your child’s development, or early intervention options at SARRC. Noteworthy programs for families of young children:
Easy Access Autism Screening Program: The Easy Access Autism Screening Program allows parents or caregivers to address concerns about their child’s development through a free screening assessment over the phone in 10 to 30 minutes. An experienced staff member will complete the interview, which is designed for parents or caregivers of children ages 12–36 months. To schedule a screening, call 602.218.8204 or email EZscreen@autismcenter.org.
Diagnostic Services: Licensed psychologists conduct assessments to determine if an individual meets DSM-5 diagnostic criteria for autism spectrum disorder (ASD). This program is available to individuals of all ages and includes parent/guardian/caregiver assessments to gather information about an individual’s developmental history. For children 6 and younger, the Naturalistic Observation Diagnostic Assessment (NODA™) is an accurate and effective alternative to the in-person assessment that uses smartphone technology and a team of clinicians at SARRC to diagnose – or rule out – autism.
Milestones: SARRC’s Milestones program offers services and support for parents of infants starting as young as 6 months and continuing through 18 months of age. This program is ideal for families with infants who have an older sibling with a diagnosis of autism, as well as new parents looking for more information and support regarding their infant’s development. Services include 1) evidence-based information on developmental milestones and parenting practices, 2) consistent monitoring and 3) a very early intervention option for babies demonstrating early signs of ASD or with a diagnosis of ASD prior to 18 months.
JumpStart: JumpStart® is designed for families of young children waiting for a diagnostic evaluation or report, those who have been recently diagnosed, or are at risk for ASD. This is a six-week, entry-level program that provides information, support, training, and tools that parents and caregivers will need to navigate autism today and tomorrow. Parents will receive one-on-one coaching and learn strategies to immediately address their child’s social communication skills and challenges.
Christopher J. Smith, PhD is the Chief Science Officer at Southwest Autism Research & Resource Center.
