One in 36 children in the United States have Autism Spectrum Disorder according to the Centers for Disease Control and Prevention and the growing number of diagnoses allows for more visibility but can also include some misconceptions.
With April being Autism Awareness Month—and April 2 being Autism Awareness Day—The Daily sat down with Sarah Cain Spannagel, adjunct assistant professor in Case Western Reserve University’s Department of Psychological Sciences, to educate the campus community on autism, its many strengths, misunderstandings, terminology and steps to follow to receive a diagnosis.
Spannagel’s expertise comes from the many hats she wears in her professional life, including her multiple faculty appointments across the university—including those at the Schubert Center for Childhood Studies, the School of Medicine and the Department of Psychological Sciences. Spannagel also runs a private practice through which she provides direct care to families in addition to consulting with local schools, and she is the staff psychologist for University Hospitals (UH) Rainbow Babies and Children’s Hospital 0-4 Autism Clinic. In all her work, she specializes in early diagnosis and patient/family education.
“There are two conflicting viewpoints,” Spannagel said of the state of autism research and understanding. “In my work, I follow a medical model because the system we live in—and through which we receive resources and support—is medical. However, using words like ‘disorder’ and ‘treatment’ can be polarizing to people. The other viewpoint is a strength-based approach, and many people prefer terms like ‘neurodivergent’ and the philosophy that ‘great minds don’t think alike’.
“All these things are true,” she continued, “but in order to receive a diagnosis, patients must go through the medical model. Ideal care is an integration of these viewpoints.”
Read on to gain more insights from Spannagel about autism.
How does one receive a diagnosis?
A good starting point is to talk to your pediatrician or your primary care physician. There are clinics at all three Cleveland hospitals—UH, MetroHealth and Cleveland Clinic—with Metro seeing the oldest group. Milestones is also a great resource with a helpline that you can call and a social worker will help you navigate. Autism Speaks is the larger international group which is also very helpful. They use the medical approach and terminology, and they offer practical tool kits that are very useful for families of autistic children. At Rainbow Babies, we spend a lot of time with a family—6 to 8 hours—we complete lots of paperwork, get teacher input, and we talk through all the information with the family and then we decide the level or prescription of care.
What does the term ‘masking’ mean?
Masking, to me, is essentially the suppression of things that aren’t going well—or may cause one difficulties in social situations—and relying on one’s other strengths. The strength being the ability to “read the script” and “follow the script,” to be able to pick up that there is a script for normalized social behavior. A highly masking autistic girl, for example, would be able to be the “prototypical girl,” and is adept at picking up the code. This is certainly a strength but you do fatigue in operating this way. Masking autistics are able to mirror facial expressions, learn the code of personal space, how to show empathy and listen, etc. Sometimes an autistic person who has “cracked the social code” can appear even more socially adept than someone who is innately wired to do so. Masking can be a real benefit, but can lead to fatigue and burnout. Masking can also happen with anxiety so make sure to meet with a specialized clinician for an autism diagnosis.
How is autism misdiagnosed?
Autism can be misdiagnosed because there are many comorbidities—meaning that other issues present themselves alongside autism—as well as shared characteristics with other issues. It is both that they co-occur and that specific symptoms can be shared. ADHD is very common with autism, but can also be mistakenly diagnosed when the true root diagnosis is autism. You need really astute teachers, parents and clinicians to really see it, and its presentation can also change over the lifespan. Girls have a stronger ability to mask so it often gets missed. There is also a significant overlap with anxiety, which adds to misunderstanding or misdiagnosis. Especially with the zero to four age group, a developmental delay can also be misunderstood as autism. Not hitting milestones can be lumped into autism, but it is actually just a developmental delay in and of itself. There is also overlap with seizures and autism, and deafness can come up a lot, too.
Because autism is so unique—there is no black or white, yes or no, in or out—and it presents itself very differently in individuals, there is a lot of misunderstanding and misinformation circulating. However, there are many resources available if you suspect autism in yourself or a loved one. Finding a support system of skilled and empathetic clinicians is easier than ever, and accommodations and resources can be made available to you throughout your life—making a diagnosis not a scary sentence, but just another facet of who you are.