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Adults with Autism: Why have some gone undiagnosed?

What are the telltale signs of Autism? Is it possible for individuals to be diagnosed with ASD as an adult? If so, why is the diagnosis so delayed? Who do I turn to for help?

If these questions are swirling in your mind, rest assured, you are not alone and help can be easily accessed.

There’s an estimated 50,000 people with Autism transitioning to adulthood per year, and that does not include those who go undiagnosed (2).

Autism is a topic that needs to be more widely discussed to increase awareness of its impact on the individuals’ livelihood and daily functioning.

What are the telltale signs?

Autism Spectrum Disorder (ASD) can affect individuals in various ways; however, there are numerous commonalities between each diagnosis. Autism Speaks refers to the DSM-5 for breaking down a few common traits to look for:

  1. Difficulty Reading Emotions

  2. Some people with autism also display the inability to read/comprehend the motives behind peoples’ actions, make factual, but socially inappropriate interjections or observations.

  3. Sensory Sensitivities

  4. Many people with autism also have tactile sensitivities or other sensitivities. There might be considerable resistance to physical touch or being held.

  5. People with autism compensate for sensory overload. Loud and chaotic atmospheres that create nerve-racking tension within the individual can overwhelm.

  6. Perseveration or Obsessions

  7. Preservation on a certain interest or topic. Having one to two topics that they discuss obsessively.

  8. Self-Stimulation or Self-Injurious Behaviors

  9. Self-stimulation (“stimming”) trying to increase sensory input (rocking can stimulate balance, hand-flapping maybe create visual stimulation).

  10. Impaired Executive Functioning Skill

  11. Cognitive flexibility and executive functioning skills are typically impacted. This could mean that children with autism prefer a strict routine and have trouble deviated with life’s many changes. Teaching transition skills and flexibility is important in therapy to help with successful adaptation to life.

  12. Impaired Motor Planning

  13. Another issue for children on the spectrum is impaired motor planning or “Praxis”. This looks like the inability to pre-plan actions to complete a task (i.e. a child does not understand where to place a safety mat during an obstacle course in therapy or cannot understand how to move his/her body around the course in a safe or efficient manner).

Is it possible to be diagnosed with ASD as an adult? Why is the diagnosis delayed sometimes?

According to the CDC, studies released by Autism Speaks suggest that 1 in 45 (or 2.25%) of the adult population is affected by autism (1). Several reasons explain why an adult with autism might never have been diagnosed as a child; possible causes include superior intelligence that masks subtle symptoms or gaps in social emotional learning, a misdiagnosis of another disorder, or having a social support system that prevents further delay in development due to available financial resources (5). As professional and medical awareness of autism continues to grow, more studies are being conducted to explain these complex variables.

Without a stronger grasp on the disorder and its cause, sometimes those who could be diagnosed fall through the cracks in childhood. Frustration with the ‘perceived lack of autism awareness among professionals’, long delays in gaining access to a diagnosis, and the lack of support parents received or were offered post-diagnosis have also been attributed to a delayed or missed diagnosis (4).

Do you need professional help?

Below are listed persons/organizations who make autism aid their mission. These are caring and passionate individuals who are here to help you and your family navigate a diagnosis. During the pandemic, accessing consulting advice and coaching services for your family virtually is now an option. Click here to book an appointment with Danielle Feerst, OTR/L and coach for young adults on the spectrum.

Works Cited:

For further resources click any of the links below to learn more and get further medical advice.


Written by Caroline Campione, Summer 2020 Intern

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