31 Learning and Coping with the Diagnosis as an Individual with ASD 

With the receipt of or discussion about a diagnosis of ASD at any age, an individual will go through a mix of emotions as they seek to cope with this information. Progression through the five stages of adjustment (i.e., denial, anger, bargaining, depression, acceptance; Kubler-Ross, 1969) are expected but with potential for greater accentuation of or return to particular stages given the challenges or characteristics inherent in ASD. Difficulties with perspective taking or theory of mind, empathy, abstract thinking and executive functioning as well as a tendency towards perseveration, may influence the individual’s reaction as well as his or her sharing or response of others to news of the diagnosis.

For individuals who receive a diagnosis in adulthood, some may feel relief and direction forward while others may feel defeated or hopeless in having struggled for so long with expressed difficulties having had the potential to have been better supported. The presence of a support system will be vital in working through news of the diagnoses. Connection with trusted persons within their support network or a professional will be essential in navigating this adjustment. When finding a trusted contact or professional, consideration of the person’s understanding of or experience in working with individuals with ASD will be of great value. The individual with ASD may need additional time and space to adjust to this diagnosis, to understand the impact of this disorder upon their life and current daily functioning as well as processing through the ways the diagnosis may have influenced past life circumstances, and to ask questions related to resources, services, and supports moving forward.

Given the reality that adults receiving a diagnosis of ASD may not have such a network and/or may not have a primary caregiver or parent(s), spouse, or close trusted relationships with friends, it will be of great importance to ensure he or she has information pertaining to potential resources as well as sources of support moving forward. Reassurance that he or she is still the same person, now with a diagnosis of ASD, and direction to literature and resources to provide added context for understanding challenges and learning new skills can serve as “next steps” in their pathway and trajectory.