The Long-Term Consequences of Delaying Autism Diagnosis

April 7, 2016

Median age of autism diagnosis is nearly four years old, meaning many children are missing out on highly effective early intervention

It’s been more than 40 years since the world first celebrated Autism Awareness Month with the Autism Society in April of 1970. As autism rates have soared over the last several decades, with one and 68 children now diagnosed with the disorder, awareness about autism and the prevalence of autism both seem to be at an all time high. This year on April 2nd thousands of businesses, organizations, and city landmarks in hundreds of countries across the world participated in Autism Speaks’ campaign and “lit it up blue” in honor of Autism Awareness Day. When the Empire State Building “lights it up blue,” you know that the world is aware.

Autism Awareness has been so successful that some businesses and institutions are trying to do more. In 2011 an advocate named Paula Durbin-Wetby launched Autism Acceptance Month, which aims to move beyond awareness to promote acceptance of people with autism in society.  This year, tech-giant Apple joined the acceptance movement, promoting both autism acceptance and the IPad with a new series of videos. If the CDC’s newly released autism prevalence figures are any indication (for the first time in decades, prevalence has remained stable), it seems that prevalence and awareness may be peaking, which then begs the question…where do we go from here?

Where do we go from here?

As Autism Awareness has reached new heights, services for individuals with autism have become more widely available. Under IDEA, many students with autism are eligible and are receiving excellent services, including ABA, speech pathology, occupational therapy, transition services, social work services and more.  And while what happens in school is definitely not perfect, it often far exceeds what is available to individuals and their families outside of the school setting. For individuals with autism to truly be accepted in society, not just in school, but everywhere, there are several key areas in need of reform.

This month we will be doing a weekly blog series entitled Moving from Autism Awareness Toward Autism Acceptance.  The first blog in our series will start at the beginning, with a discussion on early intervention, screening and diagnosis.

Early Diagnosis and its Discontents

Research has shown that autism diagnosis is reliable around the age of two, and possibly even younger, and that 87 percent of parents of children with ASD identify problems in their child’s development before the age of three, many before their child’s first birthday. Research has also demonstrated that intervention is most effective when started early.

In a recent UC Davis study, in which seven infants between the ages of six to 15 months who were considered highly symptomatic according to their scores on the Autism Observation Scale for Infants (AOSI) received early intervention, it was concluded that early intervention with infants may reduce or completely eliminate autism symptoms by the time these infants become toddlers. Six to seven of the infants who participated in the study caught up on all of their learning and language skills by the time they were two to three years old.

Under the Individuals with Disabilities Education Act, children with developmental delays under the age of three are entitled to free and appropriate special education services.  In a perfect world, all children with autism would receive diagnosis by the age of two, and children displaying symptoms even earlier would begin receiving services as infants. Sadly this is seldom the case.

Despite the ability to accurately diagnose children as young as two and evidence of the effectiveness of early intervention, especially in infancy, the latest CDC data on autism prevalence indicates that the median age at which a child receives an autism diagnosis (and thus can begin receiving services) is three years, 10 months, with less than half of children showing signs of autism at age three having received comprehensive clinical evaluation. In effect, this means that many children are potentially missing out on years of early intervention that could make a significant difference in their lives.

The reasons behind why children do not receive a diagnosis earlier are myriad, many of them having to do with pediatricians, who are responsible for ensuring that infants and toddlers are meeting milestones, and can screen children for autism and refer them for further testing.

According to research conducted by Karen Zuckerman, a pediatrician and researcher at Oregon Health and Science University, many pediatricians either dismiss parents concerns, chalking irregularities up to developmental variations in infants, or tell parents it’s too early to receive a proper diagnosis. According to an NPR article from last year, Zuckerman found that about “14 percent more of the children with an autism spectrum disorder [as compared to children with an intellectual disability or developmental delay] received a passive response from the health care practitioner, and were diagnosed about three years later than the children with other intellectual problems.”

So why aren’t pediatricians more eager to get the diagnosis process rolling when parents first raise concerns? Well aside from the fact that autism diagnosis can be difficult in very young children due to the subtly of symptoms and variations in how children develop, much of the delay is due to a lack of training. Because autism research is constantly changing, many pediatricians practicing today studied medicine long before what we know now about autism was available, and have not necessarily been trained to properly identify the early signs of autism.

Compounding the issue is ambiguity over when children should be screened. While for the past decade the American Academy of Pediatrics has recommended that pediatricians screen children at their 18 month checkup (and again at 24 and 30 months), the U.S Preventive Service Task Force recently announced that they found insufficient evidence for recommending autism screening for children between 18 and 30 months if their parents have not raised concerns. This announcement did raise the concerns of researchers and autism advocacy groups, many of whom are in agreement that the benefits of mandatory early screening far outweigh the costs; while intervention can not harm a child without autism, it can have positive life altering effects on children who do end up with a diagnosis.

Even when pediatricians are screening children and referring them to specialists, the nation’s shortage of mental health care professionals can further delay diagnosis, as comprehensive clinical evaluation typically requires a developmental psychologist, with whom it can take months to book appointments.

What can we do about it?

Given the current challenges facing young children in receiving an early diagnosis contrasted with the tremendous benefits of early intervention, it is imperative that we find ways around these issues and solutions to them so that children can access the services they need when they are most effective. Below are a couple of areas advocates, families, and policy makers can focus on:

• Train and support pediatricians: getting the knowledge and the tools for performing early autism screening into the hands of pediatricians is one of the quickest and most effective solutions to helping children with autism access services earlier

• Increase access to services before diagnosis: Providing parents who have raised concerns over their children’s development with access to services before their children receive diagnosis is another way we can ensure that young children don’t miss out on critical early intervention services

• Invest in mental health care: a shortage of qualified mental health care professionals is a national problem, impacting groups far beyond young children with autism. Changing our attitudes about mental health and investing more of our nation’s resources into ensuring everyone has access to quality mental health can improve the lives of countless Americans, and help us provide children with autism access to services as early as possible, when they are the most effective.

We have long known that early intervention is the most effective means of improving social and communication skills and empowering individuals with autism to live rich and meaningful lives. Receiving the timely autism diagnosis needed to access services early should be the right of every parent and child and is a crucial step in moving beyond autism awareness toward autism acceptance.

Join us next week as we explore the struggles families of children with autism face in accessing services once their children do receive a diagnosis.