By Dr. Stephanie Fox
I have worked with autistic individuals for 15 years, first as a research coordinator, then as a graduate student, and ultimately as a psychologist at two internationally renowned autism specialty clinics. Over the years, I have led or participated in numerous autism diagnostic evaluations.
I have assessed 11- month-old infants and 65-year-old adults; families from diverse racial, ethnic, and socioeconomic backgrounds in New York, North Carolina, and Pittsburgh; non-English speaking families and children with hearing loss. Every single evaluation concludes with a meeting to share assessment results, and more importantly, to provide thorough answers to the family’s questions. Across age, culture, and language, some questions seem to be universal. Here are the top three questions I am asked after making a diagnosis of autism:
1.“Where are they on the spectrum” / “What ‘level’?” In 2013, the American Psychiatric Association published the 5th edition of the principal diagnostic tool used to guide behavioral health diagnoses – the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This version of the DSM included numerous changes to the diagnostic category of neurodevelopmental disorders (previously pervasive developmental disorders), including combining multiple diagnoses (Asperger’s syndrome, autistic disorder, and PDD-NOS) under the umbrella term “autism spectrum disorder” and adding a “level system” to classify individuals according to support needs. The ‘spectrum’ is a broad term that can apply to individuals with varying levels of symptoms and cognitive abilities. Understandably, families often ask, “What level?” Research has shown the level system is used inconsistently across providers, centers, and states (Weitlauf, Gotham, et al., 2014). Additionally, the levels aren’t meant to be static but dynamic, and a child’s needs can and should change over time. When asked this question, I help families learn about their child’s special and unique presentation of autism and understand how much support is currently needed.
2.“Can they ‘grow out of’ their autism?”
Families, especially those of younger children, often wonder whether their child’s autism will “go away” with treatment. Autism is a neurodevelopmental difference that impacts an individual’s social communication and behavioral functioning over the lifespan. Some individuals might meet criteria for autism in childhood but not meet criteria later in adolescence or adulthood (‘optimal outcome’; ‘loss of autism diagnosis’). Autistic advocates who fit into this group have spoken about the lifelong nature of neurodiversity and the benefits of embracing the diagnosis of autism. Instead of aiming to “treat” the diagnosis of autism, I help families focus efforts on improving the individual’s mental health, adaptive skills, and overall well-being (Eigsti, Fein, & Larson, 2023).
3.“Where do we go from here?” Typically, this question is asked as the conversation comes to a close. This is when I know families are preparing for next steps. Some psychologists overwhelm families with numerous recommendations, while others might leave families not knowing where to begin. My approach is to offer two or three key first steps. After all, there is more to come in the written report! Some first steps might include connecting with the school to obtain an Individualized Education Program (IEP) evaluation and/or accessing state-sponsored behavioral supports (i.e., Intensive Behavioral Health Services; IBHS) through a local agency. However, there is no one-size-fits-all approach to moving forward after a new diagnosis of autism. Neurodiversity is just that – a countless variety of exceptional styles of approaching and interacting with the social world. Though treatment should be guided by evidence, the specific recommendations for next steps can and should be as unique as the individual.
*If you are wondering whether your child or yourself meet criteria for autism, contact Strong Foundations for an in-depth neuropsychological evaluation. References Eigsti, I. M., Fein, D., & Larson, C. (2023). Editorial Perspective: Another look at ‘optimal outcome’ in autism spectrum disorder. Journal of Child Psychology and Psychiatry, 64(2), 332-334. Weitlauf, A. S., Gotham, K. O., Vehorn, A. C., & Warren, Z. E. (2014). Brief report: DSM-5 “levels of support:” A comment on discrepant conceptualizations of severity in ASD. Journal of autism and developmental disorders, 44(2), 471-476.