The good news is that autism awareness and diagnosis have improved by leaps and bounds over the last decade. Detection is now possible at a very early age. In fact, the American Academy of Pediatrics encourages screening for autistic features as early as 18 months.
The bad news is that autism recognition initiatives have almost exclusively focused on early childhood. Low diagnosis rates of autism in adults who missed early detection have created a significant gap in our ability to provide vital assistance throughout the lifespan. As noted by T. S. Brugha (2011), autism appears to be just as prevalent in our adult populations as in children, although it has been “largely unrecognized.”
When an adult asks the question, “Do I have autism?” it’s often challenging for her to fend off the strong opinions of others. Everyone, from her aunt to her next-door neighbor, freely offers a quick viewpoint on the topic. One says, “You don’t have autism!” while another adds, “Besides, a diagnosis won’t make any difference.”
As a content expert in the field of autism in the adult, I’m grateful to be a voice that brings you hope and direction. Although, the benefits of receiving a diagnosis are too plentiful to list, here are my top four.
Four reasons a diagnosis of autism matters in adulthood
Time and again, I’ve met newly diagnosed adults who have tears in their eyes as they share their amazement at the validation that the diagnosis brings. They finally feel heard, and they understand that their experiences are valid and important.
Many on the spectrum describe a history chronic fears that others have misjudged them. With a diagnosis, the autistic has words to express what makes her tick. One person said, “Now I understand how I’m wired. I feel so much relief.”
Be assured that it’s not only the autistic individual who benefits from the validation a diagnosis brings. Family members search for ways, not only to understand their loved ones, but to describe their challenges to those outside the household. The spouse of an autistic adult expressed the frustration of seeking support from friends, only to have them disregard her experiences by saying, “All men are like that!”
Clients and families receiving a diagnosis for the first time often remark, “I wish I had known this earlier!”
Receiving a diagnosis is not the end goal. Rather than leaving an appointment with only words on a piece of paper, the diagnosis allows for practical guidance that provides you with motivation and hope.
Without a diagnosis, you are unlikely to receive recommendations that are specific to autism. These suggestions may include training in social skills, education about how to recognize neurologic behaviors, and ideas for using sensory input for calming.
Feedback that is individualized and specific will activate you to move forward with a purpose-driven plan.
Individuals with a documented diagnosis of autism may qualify for multiple supports that would be unavailable without the formal diagnosis. For example, some will receive access to autism-specific programming at a university. Others may access permission to have a support or service animal in their apartment. Autistic individuals in the workplace would have the ability to request reasonable accommodations, which may include wearing headphones or having alternate lighting.
- Protection of Resources
Every person has a finite number of resources like time, money, and energy. Those who lack a correct diagnosis often lose these on their path to find assistance. Their histories may include a series of multiple appointments and bills, therapies that produce little relief, and the chronic emotional drain of receiving incorrect labels such as “lazy” or “controlling.”
How much better would it be to spend time, money, and energy on autism-specific resources rather than wandering without appropriate direction or access to helpful support?
An autism diagnosis can be the first part of a journey toward living with strategy and purpose. Identifying what makes you tick opens new paths to well-being at any age.
Theresa Regan, Ph.D., is a rare combination of adult neuropsychologist (specialist in brain-behavior relationships), parent of an amazing child on the autism spectrum, and certified autism specialist with the IBCCES. She is deeply grateful to bring validation, hope, and purpose to individuals and their families living on the autism spectrum. With this mission at its core, she founded and directs the OSF HealthCare Adult Diagnostic Autism Center in central Illinois. Her books include Understanding Autism in Adults and Aging Adults and Understanding Autistic Behaviors. For more information and to join her new online autism community for free visit www.adultandgeriatricautism.com.
Brugha TS, McManus S, Bankart J, et al. Epidemiology of Autism Spectrum Disorders in Adults in the Community in England. Arch Gen Psychiatry. 2011; 68(5):459–465. doi:10.1001/archgenpsychiatry.2011.38