Being diagnosed with Autism Spectrum Disorder (ASD) as an adult is often emotionally and mentally taxing due to the various barriers that arise in the process. Studies have found that being diagnosed in adulthood can provide a sense of self-acceptance, improvement in quality of life, and attainment of a sense of normalcy [3]. Some avoid interactions with the medical system entirely by relying upon self-diagnosis for understanding of one’s condition, which may help individuals feel less alone and be guided by the experiences of others. Unfortunately, studies have found that it may also prompt struggle with self-doubt and cyclic grief because of a lack of professional affirmation and limited access to resources [3]. Even with a professional diagnosis, without access to further resources to address or understand one’s condition, individuals may face similar problems. Studies have found that a lack of self-understanding concerning one’s diagnosis influences identity formation and may contribute to other mental health difficulties [3].
One of the most significant barriers individuals face in the diagnostic process is mistrust and distrust of medical professionals regarding both their competency and their compassion towards autistic individuals. In surveys, many autistic adults reported beliefs that professionals would either not listen to their concerns or accuse them of making up their symptoms [3]. Practitioners are often concerned with over-diagnosis of autism due to the recent increased conversation around ASD, but this concern may cause them to disregard the lived experiences of their patients [1]. The process of obtaining an ASD diagnosis often involves a number of inaccurate diagnoses on the way to identifying the correct label for one’s condition, but this has been found to prompt individuals to perceive their doctors as incompetent or uncaring [3].
Many medical professionals lack experience with ASD in women or adults, primarily understanding how it tends to manifest in young boys [3]. In surveys, many practitioners were unfamiliar with autism screening tools and ignorant of specific guidelines recommending routine screening [1]. Many family physicians felt challenged in balancing the implementation of recommended health directives, remaining focused on parental concerns, and staying mindful of time limitations [1]. Some simply did not support the directive of routine screening for autism during well-child visits, rather than screening only when concerns arise [1]. Studies found that when they did follow through with screening, more experienced practitioners tended to focus on observation, whereas those newer to the field tended to rely upon checklists [1]. Ineffective training and education in the medical field is a critical systemic misstep in creating an informed medical community.
The healthcare system includes many structural obstacles in the diagnostic process, especially concerning personal and community resources. Research suggests that routine screening from early childhood through adulthood is the most reliable way to accurately diagnose ASD, but practitioners have suggested they struggle with applying this recommendation to a culturally and socioeconomically diverse population, as parents may be combative during the process or simply not understand what practitioners and their children are trying to communicate [1]. Routine screening is also a costly process even with insurance coverage, and tends to be rather inaccessible without it [3]. Studies have also identified a gap between the age when children could be identified with developmental conditions such as autism, and the age when those conditions are actually identified [1]. This gap was found to be even larger among low-income families with less access to medical and mental health resources [1]. Practitioners may even hesitate to pursue diagnosis for certain individuals due to a lack of available resources in their community, particularly in what they consider ‘mild’ cases where the child may not qualify for available services [1]. The healthcare system simply does not promote early recognition of developmental conditions, and does not provide appropriate or adequate resources [1].
Over the last ten to fifteen years, the medical community has witnessed a stark shift in diagnostic criteria for autism. Variations in the signs and symptoms of autism, as well as overlap with other conditions, has prompted practitioners to reevaluate the qualifications for an ASD diagnosis [1]. This may have been partially motivated by an effort to combat overdiagnosis, but it also follows the identification of a diagnostic pattern in which older family members with milder, previously unacknowledged symptoms are diagnosed after symptoms are recognized in younger members of the family [2]. Because ASD is primarily recognized in youth, the medical community has needed to reevaluate how developmental symptoms of ASD have been confused for typical and delayed developmental patterns, which prevents many individuals from being diagnosed as early as possible [2]. This finding provides support for the recommendation that practitioners default to surveillance rather than screening [2]. In this context, surveillance examines the individual’s development over time and contextualizes their experiences, rather than screening, which would be an evaluation of a child’s development at specific points in time [2].
Seeking a diagnosis can be a stressful and confusing process, but many find it to be a necessary aspect of accessing critical resources for autistic individuals. The medical community has a long way to go in simplifying the diagnostic process, but seem to be constantly reevaluating the obstacles their patients face and how they may be avoided. Confronting symptoms of ASD is a heavily individualized experience, involving the resources available in each community and the disposition of each medical practitioner. The process is not standardized, which means that the barriers to diagnosis vary person by person. The autistic community provides various perspectives on accessing a diagnosis and resources, which may be especially helpful for those without accessible resources as they come from lived experience.
Sources
[1] Fenikilé, Tsehaiwork Sunny; Ellerbeck, Kathryn; Filippi, Melissa K. ; Daley, Christine M. (2015.) “Barriers to autism screening in family medicine practice: a qualitative study.” Primary Health Care Research & Development. doi:10.1017/S1463423614000449
[2] Johnson, Chris Plauché; Myers, Scott M.; Council on Children with Disabilities. (1 November 2007) “Identification and Evaluation of Children with Autism Spectrum Disorders.” Pediatrics. https://doi.org/10.1542/peds.2007-2361
[3] Lewis, Laura Foran. (August 2017.) “A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults.” Journal of Autism and Developmental Disorders. 47(10). DOI 10.1007/s10803-017-3168-3