Receiving a diagnosis of ASD or Asperger’s Syndrome can be intense, emotional, and validating for an individual and his/her family. For many, it can begin a journey of self-discovery and understanding concerning one’s past experiences. Even in the best-case scenario for an ASD individual to come to terms with his/her strengths and weaknesses, possible sensory integration difficulties, relationship challenges, Executive Functioning issues, and potential employment concerns, it takes a great deal of time and guidance from one’s network of support. With the proper treatments, network of support, and guidance, there can be marked improvement in challenging areas which increase independence and quality of life. But, what happens when an ASD diagnosis doesn’t demonstrate improvement with an individual’s issues and challenges? There are many instances where an ASD diagnosis does not provide the answers many are looking for due to possible misdiagnosis, co-occurring psychological and/or physiological issues, family dynamics, health and nutritional deficits, or meeting academic and residential service needs. Although this may initially seem a daunting issue to raise, solutions exist that address this issue while still providing the much needed, appropriate care and treatment for individuals diagnosed with ASD or Asperger’s Syndrome.
As Directors of GRASP, a nonprofit agency providing services, education, and programming for teens and adults on the Autism Spectrum and their family support systems, we work with up to 150 ASD individuals per month in our support group program format. As Certified Autism Specialists, and over 30 years combined experience in the Autism and Mental and Behavioral Health fields, we are trained to recognize behaviors and symptomology consistent with the current criteria set forth by the Diagnostic & Statistical Manual of Mental Disorders (DSM). However, historically speaking, there have always been considerable overlaps of symptomology observed with Autism (Grinker, 2007; Becker, 2012; Frith, 1991; see also Kanner, 1943, Asperger, 1944). Schizophrenia, trauma disorders, PTSD, and Personality Disorders all have similarities to the Autistic Phenotype. And, as the DSM-5 states in the introductory section, “we have come to recognize that the boundaries between disorders are more porous than originally perceived” (American Psychological Association, 2013). This issue has created some concerns as to the best approach to treatment for the population we are trained to support. As we continue to provide services to our members, we have over time noticed some inconsistencies in a number of individual’s psychological, physiological, and sociological profiles regarding the known, and accepted, ASD criteria. Following are several specific case examples from our groups can be cited as reference to these inconsistencies.
“John,” age 28, attended one of our groups for nearly two years. He had official co-occurring diagnoses of Schizo-Affective Disorder and Asperger’s Syndrome. His behavior was consistently disruptive, making a significant amount of subtle noise to create upset within the group. He also repeatedly disobeyed established group guidelines by attempting to discuss off-limits subjects, which he knew would insight other members. Additionally, in each group he attended, he left early, prompting a facilitator to address his escalating behavior. Knowing this behavior was occurring, his parents chose not to remain onsite and were unreachable by phone. “John” is an example of an incorrect diagnosis. Although he had awkward social interactions and intellectual learning disabilities, his Schizo-Affective Disorder, his living situation, and his family dynamics were creating the appearance of ASD without properly meeting the criteria.
“Jane,” age 22, attends our groups regularly. She has had both auditory and visual challenges since birth. Because of these specific challenges, she had difficulty academically, in maintaining relationships, and in activities of daily living. Due to her physical disabilities, she required an IEP and needed services from her school district. However, in order to receive these services, she needed to obtain an additional diagnosis justifying the expenditure. A school psychologist gave her an Asperger’s Syndrome diagnosis to provide her with necessary academic and residential assistance. Although “Jane” had challenges in particular areas that individuals with ASD share, she did not ultimately meet the current criteria for the diagnosis.
“Bill,” age 48, has attended our groups for over eight years. He currently has a co-occurring diagnosis of Schizo-Affective Disorder and Asperger’s Syndrome. His parents were WWII survivors; having endured an extremely traumatic experience. After the war, the family moved to the United States to begin a new life. For many years, the family was isolated culturally, linguistically, and socially. His mother comforted herself and “Bill” with food. Because of his childhood, he became an adult with social issues and weight concerns. This led to his psychological evaluation determining his diagnoses. Although “Bill” showed no signs of developmental delay, rigid interests, self-stimulating behavior or other criteria, he was given an Asperger’s Syndrome diagnosis due to the effects of his family system and overlapping symptomology.
Lastly, “Bob,” age 31, attended our groups and programs for approximately one year. He had an Asperger’s Syndrome diagnosis and presented with several significant physiological tics, speech impediments, and social issues. However, he repeatedly lied to the Facilitators and members and had inconsistent physical issues, meaning the issues varied occurring only part of the time. After several behavioral issues, and considerable, lengthy discussions on our part, we confronted “Bob” with our observations. The story emerged that although he had a speech impediment as a child, he no longer did. Due to his speech issues, he was mocked incessantly by his classmates and, therefore, had difficulty with social interactions. His father was also extremely abusive toward him; his mother seemed to act as if nothing had occurred. His behavior as a teen became erratic, involving property destruction and alcohol abuse, and was consequently diagnosed with Conduct Disorder. He learned that the more disabilities and issues he had, the less he was ultimately responsible for. As a result, he attempted and succeeded in lying to psychological evaluators to gain an Asperger’s Syndrome diagnosis. He lived with the ASD diagnosis for over a decade until discovery. He has since been reevaluated and given an ASPD (Anti-Social Personality Disorder) diagnosis. Although he presented with past speech issues, body tics, and social difficulties, his erratic behavior, lying, manipulating, lack of remorse, and lack of repetitive behaviors was not consistent with ASD diagnostic criteria.
As the DSM-5 states, the descriptions are “essential to improve understanding, reduce stigma, and advance the treatment and eventual cures for these conditions” (American Psychological Association, 2013). But, as the previous examples illustrate, due to overlapping symptomology of diagnoses, an increasing number of individuals are not receiving the proper treatment to assist them in leading more productive lives (Herbert, 2014). Where do we go from here?
Although the current diagnostic manuals, and by extension psychologists, clinicians, and specialists, strive to provide a proper framework to understand and treat individuals facing challenges on a day-to-day basis, if we continue to diagnose symptoms, we may be missing valuable information on how to better serve these individuals. The solution lies in examining an individual’s psychological profile, physical condition, past experiences, family history, environmental components, and health and nutritional factors, thereby creating a whole-person approach. Herbert (2014) states that “we try to treat symptoms without necessarily teaching people to regularize these fundamental, everyday epigenetic factors aspects of existence.” By working with the epigenetic factors and treating the underlying causes of symptomology, we can more accurately diagnose people. But, most importantly, we can alleviate many of the issues that create social, psychological, and physiological challenges, increasing the well-being and productivity of individuals with ASD symptomology. And, as Directors of GRASP, our role in the ASD Community is to acknowledge each of our members as a whole-person, recognize underlying factors affecting treatment, refer individuals to our organizational network for support and evaluation, and continue to provide consistent, safe, and confidential groups for our members.
Kate Palmer, MA, CCP, CAS, is Executive Director and Lindsey Pfundstein, BA, AC, QMHP, is Programs Director of GRASP. GRASP is a 503c3 non-profit organization dedicated to improving and enriching the lives of adults and adolescents on the Autism Spectrum along with their families. For more information please visit our website, at www.grasp.org or contact us at firstname.lastname@example.org.
American Psychiatric Association, (2013). Diagnostic and statistical manual of mental health disorders: DSM-5 (5th ed.). Washington, DC: American Psychiatric Publishing.
Asperger, H. (1944). Die autischen psychopathen im kindeshalter. Archiv fur Psychiatrie und Nervenkrankenheiten, 117, 76-136.
Asperger, H. (1991). Autistic psychopathy in childhood. In U. Frith (ed) Autism and Asperger’s Syndrome. Cambridge: Cambridge University Press.
Becker, K.G. (2012). Autism, Autoimmune Disease and Socioeconomic Status. Autism 2:104.
Frith, U. (1991). Autism and Asperger’s Syndrome. Cambridge: Cambridge University Press.
Grinker, R. (2007). “Diagnostic Criteria for Autism Throughout the Years.” www.unstrange.com/dsm1.html Retrieved 5/31/2014.
Herbert, M. & Arranga, T. (2006). Autism: a brain disorder or a disorder that affects the brain? Interview conducted by Autism One Radio, Fullerton, CA.
Herbert, M. (2014, March). Everyday Epigenetics. Lecture conducted from Autism Research Institute, San Diego, CA.
Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217-250.